GUEST: Molly Bloom, PhD, Inclusive Design Researcher, Adobe

https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E12_We_Have_Sh--to_Understand.mp3

The Incluse This! podcast has forever changed me, and that’s the point. As my dear friend, colleague, and guest this week so eloquently put it, “One of the main ways this journey has impacted me is that I’ve learned that I absolutely have internalized ableism. I think – there’s productivity and there are timelines, and we have to stick to that. And you kindly remind me what it’s like to experience your disability. It has helped me shift the way I understand how we can get things done in a more collective way, that’s less about this sense of productivity that requires an able body and an able mind.” She goes on to say, ” I’ve learned about the different perspectives that are in different disability communities within the larger community, and how those don’t always align with the people who might be the most vocal advocates in the disability community.” We hope you’ve enjoyed the journey as much as we have! Until next season…take care and be well.

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community.

Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin.

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity.

Today, we’re talking with my very dear friend and colleague, Dr. Molly Bloom, and we’re talking about Season One of the Incluse This! Podcast, which as of today is a wrap!

Dr. Molly Bloom has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community.

Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin.

Good morning, my friend!  Welcome back to Incluse This! I actually can’t believe this day is here. We’re recording the final episode of season one of the Incluse This! Podcast!

Yeah, good morning. I am really grateful to be here. I’ve been listening all season and not just to the episodes where you had me but to the episodes where you had other people. I actually can’t listen to the episodes where I’m on them, but, it’s been a really wonderful season and I’m so excited that I get to wrap it up with you.

Oh, I’m so happy you’re here. It’s been, I have a hard time listening to myself, so I haven’t been going back to all of them either, but I think I’ll have to, because isn’t that part of how you learn how to be a better speaker. You have to put yourself in those uncomfortable positions,

I guess. I guess that’s part of it. Just, you have fun with that. (laughing)

Thank you. (laughing) So, when I first started talking about podcasting, everyone’s like, yeah, it’s so easy. You’ll love it. I just want to say that I didn’t find any of this work to be easy. At times as you know I not only didn’t love it, but I actually hated some of it. I think the most laborious part is the editing process. But, the great thing is that I went from having no idea how to use audio hijack and Adobe audition to whatever level of skill you’d say I’m at now. (laughing)

Woo hoo. Congratulations.

Right? Thank you.  right. I think it’s ironic, actually that the impetus for launching this podcast was my anger at the ableism that was and continues to put disabled lives at risk during the pandemic, as well as the murder of George Floyd. And here we are today, a little more than a year later, we’re watching former police officer Derek Chauvin’s murder trial, as his lawyer tries to argue that it was drugs and George Floyd’s system, not this white supremacist police officer that killed George Floyd. We also have people scrambling to get vaccinated after having been deep prioritized through this whole process. We have anti-Asian hate crimes at all-time highs. We’ve had several mass shootings in this country in the past few weeks. And do I really need to go on, it’s been trauma after trauma. Am I missing anything in that Molly?

I’m sure you’re missing things. It’s been an incredibly rough, it’s been a rough year and continues to be rough. I mean, I just saw in the New York times that there was another attempted attack at the Capitol. I don’t know what to say, but I hope that these rough experiences, some of which are not new right, the continuous murder of black people by police officers isn’t new. There’s wider discourse around it now. Racism towards Asians and Asian-Americans is not new. There’s just a deeper understanding of it. And, I hope that all of us facing these issues together, we can come away with this with some movement towards growth. That’s why I’m really loving this podcast that you’ve put together.

Yeah. You know, it’s funny. My husband was just on the last episode with me and we aired this, just bits of this longer interview that we did for Yahoo media group. And he told me last week, he was like, I think you’re getting soft. Like you’ve gotten soft towards the end of the season. I was like, no, I haven’t gotten soft. I said, we’re celebrating MS Awareness month together and with our friends. I had to really start this one strong, make sure everyone understands I’m still the fighter that started the podcast. I want to say, I’m extremely proud that through all of this trauma that we’ve experienced, the Incluse This! podcast has brought a diverse and really incredible group of guests together to address so many of the issues that you were just talking about that I stated previously and other issues that we’re facing each day as disabled human beings and as a larger part of our communities and the world.

So, the original goal was, and still remains for this podcast is to bring disability to the forefront of the greater diversity conversation. We’ve talked about being disabled enough, why the ADA doesn’t represent inclusion. The fact that disability policies in this country don’t work because they’ve never really been fully funded and implemented, why COVID long haulers are fighting to be recognized by the federal government as disabled joy, as part of resistance, Oppression Olympics within the quote unquote disability community. The question around an impact of disability identity, how powerful, the words and language we use are, tools and resources for disability, allyship, and so much more, Molly, what was your favorite episode this season and why? And you can choose your own. (laughing)

Mmmm…Thank you. My favorite episode. Okay. Over the season, I have really enjoyed just on a personal level, seeing the way that you’ve developed and your style has grown to be more conversational. I think those warm conversations that you can elicit bring out just these delightful details that really enrich the stories that you are trying to highlight, and that your guests are highlighting.

Awwwww

I loved the episode was soon to be Dr. Stephanie Keeney parks. She, she talked about her own experience as a mother of a child with autism. She also talked about the research that she does on autism and the research that she does with families with autism. There was just this great warmth and it was so f***ing human. It was just so human and I loved hearing that. Obviously she’s also my friend. I thought that was wonderful. I loved the episode with you and Carl, it’s hard to, it’s really hard to pick a favorite. I think there’s been such great content out here.

Do you think that, if the goal remains to bring disability to the forefront of the greater diversity conversation through this provision of a safe and coalitional space for having these difficult and sometimes uncomfortable conversations in your professional and academic, as well as your personal opinion, do you feel like this podcast hit these marks?

Yeah, I think there were some conversations that likely challenged people’s understandings of disability. There were conversations that challenged my understandings of disability, right. I don’t, I have studied disability for a long time and there are perspectives here that sometimes I agree with sometimes I disagree with and they’ve opened the perception that I have of disability. They’ve also given me, you know what, they’ve given me a different perspective on how I think of the disability community as a whole, because, I spend time within my specific disability communities, what that looks like for me, it tends to be adaptive sports, disability studies communities, and communities that I work with in my research, which is sometimes assistive technology, sometimes it’s rehabilitation. I come away from that experience with this sense that like, this is what represents the disability community. And that is not what I found.

There are people who are more closely aligned with the medical system and the benefits that they feel like they get from the medical system. There are people who are vying for bringing feminist ideologies into every day interactions within the disability community that have been new to me. And I think I’ve grown. I like to see where it’s going in the future.

One of the things that I remember about Stephanie, I loved when she said it’s important for people to remember that when you just say the black community, that it’s the same as the disability community, everyone within each of these communities has a different experience, a different perspective, a different thought process. And she shared that. I can’t remember the author, Angela, I can’t remember the author’s last name, but what she shared was that this author said, one way for black people to truly be free is to be able to truly be themselves with their own opinions. And for people to understand that the whole community is not grouped under one umbrella thought or perspective.

What did you find that it changed some of your perspectives on how you look at disability? Could you explain that more? Or could you provide an example of one of the specific episodes?

Yeah. I’m thinking about, the episode that you did for MS Awareness month with Dawnia, please remind me her last name…

Dawnia Marie

Dawnia Marie, right. Who is undoubtedly a force. She seems to come in with such passion and love for the work that she does within the MS Community that she works with. It seems like what you have built, what you and your colleagues and what you’ve built along with Dawnia has been this really wonderful community for people with MS to share experiences and build coalition and understanding, and really a way to enrich their lives. What’s what has been different for me about that is that that’s a community that is really closely aligned with medicine, right? Like, you can go to that community and you can talk about, what kind of medicine you’re on, or maybe what sorts of doctors you want to work with and don’t want to work with and how to advocate yourself with doctors.

Right. When I come, when I come at a perspective on disability from a disability studies perspective, my approach is the medical view of disability is super limited because in medicine like the definition of the understanding, the whole ethos around disability is that disability is a limitation of the body. The goal of medicine is to reduce disability, right? That’s totally different from like a disability pride perspective, disability studies perspective that says, I am not limited. I am by some sort of pathology of my body. This is the social model versus the medical model, which there’s been a lot of talk about the social model of medical model. You can look it up. The social model of disability or a disability pride perspective would say, there’s nothing inherently wrong with me. I’m not lacking. It’s the world and society that’s wrong. It’s the world in society that needs to be changed so that I can be fully embraced and not marginalized.

I’ve just gotten like a greater understanding of the complexities of disability for some people with a disability and in some communities that are disability communities, medicine, and an embrace of that medical approach is it is an inherent part of that community for really good and complex reasons. Right? So it’s deepened my understanding of, how I think disability community needs to be structured. Right. I, I feel like it just like slightly less militaristic about the, about pushing against that medical perspective on disability.

Wow. I never even actually thought about that.

Yeah.

You and I talk a lot about disability identity and my own understanding of my identity with my disabilities. I never really thought about the fact that I also am incredibly closely aligned to that medical model.

And, and there’s probably a lot of reasons why you are closely aligned to the medical model. There’s probably, there’s probably a lot that you can say. You have said over the course of the season, about how I, I don’t know, it’s just kind of the state of the world that we live in, that disability is embedded in medicine. It is in our world, right. There might be an alternative world in which it’s not. Sometimes that engagement is the way that you sometimes it’s how you advocate for yourself sometimes it’s how you push back. Right. It’s, it’s complicated.

Have you been to self-help groups?

No, I, I, I’ve been to maybe one or two self-help groups, but I’ve never really fully engaged with them.

Do you think that if you were to go to a self-help group for amputees that the group members would talk about their providers or treatment they’re receiving, or would it be as aligned as we kind of are because you’re right. When we walk into a self-help group, this is what we say, I’m Sarah Kirwan. I was diagnosed in 2011, I’m on Copaxone, 40 milligrams, three times a week. That’s my DMT, my disease modifying therapy and my doctor is so-and-so. And that’s how you introduce yourself. It’s kind of, just the introductions and that is totally aligned medically. So now I’m curious if you went into an amputee self-help group, what would that conversation be?

It might be, it might, it’s probably different in every amputee self-help group. The amputees that I’ve interacted with the most, I think, if you’re a person who sustains an amputation and you’re going to a self-help group for like newly injured amputee is like new amputations. There probably would be a deeper embeddedness into that medical system, because that’s how you understand yourself at that point. With the amputees that I know who are further away from their amputations, and then some people are, have congenital limb deficiency, right? So there’s a lot of people who are born with limb deficiency and they don’t sustain an amputation at some point in their lives. For the people who are further away from it, I don’t think the amputees that I know are as closely aligned with medicine because, I don’t want to get into like comparing disability experiences, but I do think, right.

I do think it can be less involved with, treatment and therapy if you’re an amputee, not all the time. Right. I think on average, probably a person who’s an amputee. I am thinking like a leg amputee has less interactions with the medical system than a person who’s diagnosed with MS. I don’t know the data or the statistics, but I think that’s one of the reasons it might be different.

Well, and what I think, what I’m trying to get to is, so with MS, it’s constantly changing. You’re going back to that self-help group, each week you do go, well, you might go to a newly diagnosed class or optimal living, which we talked about in another episode, but then you go to the self-help group, like it’s continuous. I mean, I’ve been going to self-help groups now for 10 years. I wonder if it’s like, and I you’re right. I always see like spinal cord injury, newly diagnosed groups for amputees. There are also those ongoing support and self-help groups. It’s just interesting. It’s I never thought about the alignment that I have so closely with the medical model, as I’m trying to explore this identity model as well.

Mmmmm. Yeah, and it’s really interesting. There is super interesting ambivalence between the idea, like the idea of self-help, just the idea itself, not what actually happens in self-help groups, because I think what happens in self-help groups can be, these really interesting spaces of community, which I talk about in my dissertation, not necessarily a self-help groups, but just generally when disabled people are around each other and talking to each other, there is some really beautiful instances and like transformative understandings of identity. Like there’s cool stuff that happens when disabled people are together, but just the whole idea of like self-help as a concept, that’s a hard one for me to understand with a background in disability studies, because, my perspective is why is it feels very, it feels very neoliberal. Like why are the disabled people, the ones that need to help themselves? How about it’s like a societal help group? Like how about society changes? Not me.

Mmmmm. Interesting. And here’s the background on that just from an MS perspective, there is, a lot of solidarity and healing that comes from that group and understanding that the person leading it is your peer, as opposed to someone who would be coming in from the outside, trying to, I don’t know, talk about MS From a perspective that they really don’t have, but that’s really interesting. Also a societal help group. Huh.

Yeah. Where are the groups for people who don’t identify as like, disabled, like where the groups for like able-bodied able minded self-help groups, like how you can not suck as much? (laughing)

(laughing) Well, that, I mean, and people like to call them support groups, which also members of the MS Community are like, well, I don’t want to, I don’t need a support group. I’m just going to talk to my peers. I think there’s so many different layers of what that looks like for people and how they experience that or if they even want to.

Yeah. I think that it is awesome when disabled people get together and they start talking about shit. Like, I think that, I, my perspective is that for people who sustain an injury, some point in their lives, that is a form of rehabilitation that’s often not recognized by some medical systems it is. But, I also think, I just know from my own experiences in disability community, right? Like I, I had a lot of preconceived notions about what it was going to be like to live as an amputee that were sort of shattered when I, when I met the bad-ass disabled women that I played basketball with. Right. They, and they modeled for me this, not this life, that’s like full, I mean, free from strife. Like it’s hard to live with a disability, but a life in which you can go, I don’t know, f*** that. Like, this is who I am and I can build a meaningful life.

Yeah. I spoke on a panel this week, a women in leadership panel and they asked if I had any advice for young professional women, what would I give them? And I said, the thing that I would do over again is that I would never allow anyone to shame me for bringing my authentic self to the table. I would have pushed back on that said no to that. I wouldn’t have had to go through years of rediscovering my kind of authentic self and getting to this empowerment of owning my identity as a disabled woman with MS.

You know, you and I are going to talk next season about, Crip time, which I really find interesting because if I have political aspirations, which I always have, I mean, I love politics. I love all of it. I am a political junkie and I just like take it all in.

When I look at that. I look at the reality of could I ever actually work in Congress? And yes, I could, because of my all, I don’t have to go through a list, but yes, I’ve, I could do that. But with my MS. Could I do that? No, because how would I spend the night in a vote that goes on for like 17 hours? I mean, there’s so many demands, like physical and mental demands on that. How is that accessible for someone who has a disability like me that could just couldn’t do that,

Right. Yeah. That would be wonderful. We can totally talk about Crip time.

Yeah. Cause I’m very curious about that because I feel like it removes us from so many things just the time and the production level. Like I can’t go 12 hours, 15 hours. Like there’s just no way. And then I was thinking and what would be a reasonable accommodation for that they let someone sit in my place. Right. I mean, how else would you do that?

I don’t know. That’s a good question. That’s really interesting. And I wonder if people have thought about this in, like, I wonder if there’s been any discussion of it with lawmakers or people who are disabled, who are like dealing with sh** or even, it extends beyond disability too, because I had Congress members have lives too, and I’m sure they have sh** that comes up for them.

True. That’s a very good point. They, that family, I mean, even for a young woman with children, there’s that wanted to have a balance. There’s no way that’s why all these women are like 90.

And then you were talking about in your dissertation about working with people in Crip time. On the flip side of that is, I may not get to something today because I don’t feel well that day. It’s just not going to happen. People have to also kind of come to terms of how to work around or to be more flexible around timing and production. But anyway, there’s so many topics I want to cover and have conversations about next season. And I’m really looking forward to all those conversations. Season two will launch in the summer. I really want to explore disability in different cultures and countries. I want to continue to bring new perspectives and thoughts from disabled people here in the US.

We’re going to have guests conversations with guests about the impact of anti-Asian rhetoric and language, what it’s like to be disabled in a country like Puerto Rico, that’s an American territory. Why disability equity and inclusion work belongs somewhere other than human resources. Why inclusion is more than the implementation of the ADA, the difference between disability justice and disability rights and much more, I mean, that’s a big plate of topics, so we’ll have to whittle that down.

But you and I are going to have a pre Paralympic pre-Olympic conversation about disability, inspiration porn, which I can’t wait for. And I’m really interested by this conversation just as it relates to sports, because I feel like we look at other athletes and we’re like, yeah, they’re an inspiration. And then we look at adaptive athletes and we’re not supposed to call an inspiration. And so I think that we really have to explain that to people why that is so that people understand what inspiration porn is and why it’s bad.

So I’m stoked about that. Are there other topics you feel that are like really urgent to be included in the seasons or something that you really want to have a conversation about next season that people aren’t talking about in this space?

Molly Bloom

That’s a hard one. I don’t, I don’t know. There’s, there’s tons of topics. I, I like your list. (laughing)

Okay. Maybe we leave it, maybe we just leave it at that. (laughing)

Okay. (laughing)

There are, there are so many things, one of the other things I really want to, gosh, I heard on the news last night, as we’re, as I’m watching this trial, they were talking about a jury of your peers. Right? And that’s another thing that I find really interesting that I want to talk about next season is how do we ever really have a jury of our peers, people with disabilities who are going to serve as jurors most of the time, they don’t because of the accessibility issues. And like I shared with you, I, at one point I had to get a doctor’s note to say, Hey, there’s no way I could participate in a trial that’s four to seven days long. I can’t guarantee you that I’ll be here every single one of those days. And from that point on, I never got a jury summons in the County of Los Angeles again.

So, how are we, how is anyone in this country even getting a jury of their peers? I’m very curious about this topic and then really looking at it from like a disability perspective. So, I have so many, thoughts and ideas for next season, and it’s still difficult for me to believe that it’s a wrap on season one. I mean, it’s been such an incredible learning process for me. It’s also been extremely challenging both mentally and emotionally. I think physically because of my health, but it’s just been such a rewarding experience. I’ve grown and I’ve gained so much knowledge and I’ve been introduced to so many different perspectives and thought processes and just words and language really. And it’s just been incredible. How would you say this journey has that you’ve taken with me over the past 12 months? Has impacted you or changed you?

One of the main ways that this journey has impacted and changed me is, I’ve learned so much about working with you as a human in the sense that even though I’m a person with a disability, I, I absolutely have internalized ableism that I’m like, this is like we’ve there’s productivity and there’s timelines. Like, we got to stick to deadlines and sh**, and you kindly remind me like, Hey, we’re gonna push back this recording. I’m burnt out. I’m exhausted. And this is just what it’s like to live with the kind of disability I like. That, and that as well as, reading some of the stuff that I’ve been reading has helped me shift the way I understand how we can get things done in a more collective way that is less about this sense of productivity that requires like an able body and able mind. I, like I said earlier, I just I’ve learned a lot about the different perspectives that are in different disability communities and how those don’t always align with people who might be the most vocal advocates in the disability community, like on Twitter and, people who are involved in policy or people who are writing disability studies articles.

Right? I remember the guests you had on who talked about, COVID-19 being a disability, right. How that is not necessarily something that a person in the who’s a strong proponent of disability advocacy in this traditional sense might agree with. Right. And, and it’s been really wonderful and it expanding it’s expanded the way I understand the value of, lifting up the voices of people with disabilities, especially those who might or might not align with other attitudes on the disability community.

I think it really goes back to like what Stephanie said, that everyone has a different experience and a different thought on that experience and a different perspective because of that experience. It’s so nice to have a woman and friend who stands in solidarity with me to try to and do the best to learn and understand that. I’m so grateful for that because it’s uncomfortable for me to have to share that when I go go go crash. I do think that has been something that, is so nice to be able to share it, be able just to share that with you, Hey, I don’t, it’s not going to happen today. I have a migraine, or, my energy levels just aren’t there.

Yeah. It’s been really valuable for me too. I appreciate your, the dialogue that you open up about that vulnerability. Like I realized that I consider myself an advocate and a person who’s very invested in like better lives for people with disabilities. I’ve never even asked for like an accommodation at work. Right. I’ve never even really thought about what that kind of world might look like for me as a person who has a disability. And, and I think there’s just so much, I don’t know what else to call it, but ableism that has percolated into the way I view what I do and how I work, that it’s something interesting to explore.

Yeah. I love that. I think it’s been really thought provoking. Some of the episodes have had some pushback, some have had, just a lot of, I mean, for the most part everything’s had support, but there has been pushback on certain topics. And I think that’s important that we have that pushback to have these conversations because we do all experience our disabilities in a different way.

I want to thank you so much, Molly for being here today. I just, I’m incredibly grateful for you and your friendship and your support. You’ve been just a shoulder for me to lean on you’ve been this ear to listen. Like I said earlier, a disabled woman to stand in solidarity with me. You’ve been my biggest cheerleader along with Carl. Can’t forget him (laughing) during this entire process. And you’re just this incredible human being. I’m so grateful that you are not only here with me today, but that you have been with me throughout this entire journey and I’m really looking forward to continuing this next season.

Thank you so much, Sarah! I am taking all that in, soaking it in and it feels wonderful. I’m glad. I’m really glad that we have this relationship and I’m really glad that you put together this podcast. I can’t believe you’re done with the season. Congratulations, and I cannot wait.

Oh my gosh. Did you think, did you think I’d make it?

No, no. I didn’t think the podcast was gonna happen. I was like oh, okay, she wants to, everybody wants to start a podcast. Okay, great. I had no idea you were actually going to do it. (laughing)

Oh my gosh, see? Just proving people wrong. Proving people wrong. (laughing) It’s been incredible! Listen, I have to tell you, I’ve been carrying around my tarot cards for two days.

Yeah, what are you finding?

I haven’t done anything with them, yet. I’m just getting my energy on them. I slept with them the past two nights, and I’ve shuffled them, and I started reading my book, and now I have them in just a little bag that fits in my sweater, my house sweater pocket, and I’m just you know, carrying them around, doing a little shuffling right now, just touchin’ ’em.

Just putting your energy all over them. That’s f***ing great, that’s exactly what you need to do. And, the image of you in a house sweater with tarot cards in it is just like that’s phenomenal. (laughing)

(laughing) Anyway, I’m so thankful for you being here today and I’m looking forward to having you back next season and chatting about all the amazing topics that we’re going to showcase in season two. Thank you again.

Mhmm. Yeah, can’t wait!

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at [email protected] with podcast episode ideas, as well as comments and questions.

Remember to put your disability lens on when you look at the world, and tune-in next season for more stimulating conversations on Incluse This! – the podcast that’s really a movement. Take care and be well.

GUEST: Carl Deriso, MS Advocate

https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E11_Your_Only_is_My_Everything.mp3

We celebrate Multiple Sclerosis (MS) Awareness Month for 31-days each year; however, close to one million people in the United States are living with the effects of this chronic and debilitating disease each day, including our host and her husband. This week’s episode is a candid conversation between two fellow MS Warriors, who are also married, and there’s no topic off-the-table. Although the diagnosis is the same, everyone experiences MS in very different ways, and this week we discuss personal journeys through diagnosis, dating, marriage, pregnancy, self-help groups, advance directives, and much more. Don’t miss this special episode! #MSAwarenessMonth2021

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity.

Today’s show is a bit different. We’re celebrating MS Awareness Month and I’m here with my husband and fellow MS Warrior, Carl Deriso. Good morning, honey.

Good morning.

We’re celebrating MS Awareness Month, which is in March. I’m excited to have you here today. Welcome.

Thank you.

We’ve been together for a while now. We got married in August of 2020, and you and I recently did an interview for Yahoo media. One of the things that you and I really wanted to go back to was to talk about the fact that we both have experienced MS in a different way. When we met, I was at a point where I pretty much thought that everything I experienced had to do with MS. And you were at a point where you didn’t feel like most of the things that you experienced had to do with your MS.

Let’s take a listen to a little bit of this interview, an edited down version of the original interview that we did together with Yahoo media group. It definitely highlights our experiences and our journeys.

My name is Carl Deriso and I was diagnosed with MS 1996.

I’m Sarah Kirwan, and I was diagnosed with MS in 2011.

I grew up in Arizona and after several summers of the heat there, I started developing tingliness in my feet and my hands and back in 1996, MRIs were not a common thing that were done. I went through the typical spinal taps, went through all the exercises with a bunch of different doctors. Finally they said, we need to send him for an MRI. That’s when I was originally diagnosed with lesions on the spine.

But you also had another issue.

Yeah, actually I didn’t get very much treatment at all. From that time I just kinda got used to my symptoms. In 2006, I had a flare or a, an exacerbation of my symptoms and had some blurred vision. I went back to a neurologist and they, at that time said, yeah, it looks like you’ve had a, you’ve had an incident, so we need to get you on some medication. That’s when I started, actually using a treatment for MS.

And I, actually my initial symptom was my left ear was very full. I got off of a plane in June of 2010 and my left ear just never popped. Or opened. It was just very full. I started going through testing for a vestibular schwannoma, which is a brain tumor that sits on your optic nerve, as well as your ear canal. As they were doing that testing, they found the lesions on my brain. At that time I was actually finishing grad school, which was very stressful. I was ending a long-term relationship at the time, which was also very stressful. I was trying to find a job, after grad school. It was like this perfect storm for me, where I had all of these symptoms presenting in this time-space continuum that they needed to present in for them to diagnose me. After having that first symptom in June of 2010, I ended up finally being diagnosed in February of 2011.

I got involved right off the bat because I went to my first self-help group and I walked in and I look very able-bodied, I look very non-disabled when I walk in. So I walked into the room and I was met with a lot of people who had been diagnosed many years before. There’s a difference in medications that were available. There’s a difference in kind of your outlook on the disease at certain ages or when you’re diagnosed, when it presents. I walked in and I was told you don’t look like you have MS. From that point on a, I just started thinking, what am I supposed to look like? And if this is my space where I’m supposed to belong, I don’t feel like I belong. I need to figure out something that’s going to help me feel like I belong so that I can process this. My friend Beth, and I decided that were going to start a young person’s group, self-help group for people in their twenties, thirties, and forties. That was two months after I was diagnosed, yeah.

And I, because I had gone so long without any real symptoms, I was an individual who thought, okay, I’ve been labeled with MS, but I really don’t have things that affect me on a day to day, life. I was in a position at work where I had more flexibility with my time. I decided I was going to get involved now and rather than doing money and just kind of signing a check and send it. I wanted to get involved start kind of seeing what was out in that community. I got involved with a self-help group that was about an hour South of where we currently live now, because it was the closest local one and it was an inviting and they had a fair amount of members and it just seemed like it was a good jump into my first step of trying to get involved. That’s ultimately where we ended up meeting, because I ended up being a co-chair for this, for the self-help group. I’m not sure if you were invited up or you decided to come up?

Well, I was the director for healthcare access for Southern California in Nevada for the MS. Society. I was really looking at self-help groups and how they were operating, what kind of support we were giving in certain areas. I had requested to come up to their self-help group in Santa Barbara. Of course I walk in and I have like stilettos on and they’re like, okay, who is this? Just relax a little bit, lady.

No, when she first walked in, she definitely caught my attention and I didn’t even remember what you were wearing. It was just your energy and your smile. And, so I bought her lunch that day as were doing the presentation.

I was like yeah, you can buy me lunch. (laughing)

I chased her for like three months. She wouldn’t even give me a date for like three months. It was more difficult because she lived in LA and I was up in Santa Maria where we are now. And so that’s a three-hour commute. Even though I have more flexibility, I still had a full-time job. I was putting in 60 to probably 70 plus hours a week for me. It was a connection that I felt that I want, obviously three hour commute and we had just met and he, and, we had conversation, but I, I definitely wanted to pursue more time with her. I knew that might be difficult, but I was at a stage, 52 now. I was, 50 or 47 or so. I was, I’m at a point now where I want to, I want a companion and a life partner and she’s the perfect one.

It was a drive that just kind of kept me going. And, yeah, it, I think the turning moment for me was I was at a position I’d been at for about 17 years. When we first met, she shared with me that she had plans to go to Colorado and I came to her one day and I said, Hey, I want to go with you. I think that decision for me to kind of step away from a very routine environment that I was in, to just pick up and go to another state with her was really the driving moment for me. So…

Yeah. I would say that we complement each other very well. I was at a place where I was just kind of done dating, in 2010 when I ended that relationship. I was diagnosed, I think I went into a period of what I call serial dating. It was, it was very difficult because, gosh, it’s like, when do you disclose, how do you disclose, especially when you look like I look and there’s a lot of internalized ableism that comes with, feeling not worthy to be able to express, like I have a disability it’s invisible, but these are what, this is what I experience each day. My reactions from people at first, I didn’t share it because I didn’t really have to, it would be, we would talk in group, do you wait until the third date? Do you wait until the fourth date? Do you disclose on the first date? So I decided, because I’m a data girl, I decided let’s just test the different theories. (laughing)

I tried to wait until like two or three dates in and it would be, I had one gentleman say to me, that’s just really not something I can take on, but I want you to know that I’ll be cheering for you from a far. Just like, I was like, I don’t know. I don’t understand that, but okay, thank you. Like, I don’t need your mess here. You know, that would happen. I would get to a point where I would just say it right away. I’ll just be like, let’s just lay it out there because I really don’t want to go through two or three dates. I would lay it out there and then I would find that people really wanted to now men wanted to take care of me. I also didn’t need someone to take care of me. I needed someone to complement what I was going through.

Carl and I have very different…Carl’s more structured, low risk. Yeah. I’m more like outside of the structure, like the loud ones. So, so we have a nice balance with that. I think that’s what really attracted me to Carl because he gave me Carl, when I’m with Carl’s my home, I’m safe, I’m supported. It’s everything that I needed that I, I didn’t know that I needed. My dating process to get to Carl was very different than your dating process, I think, to get to me. But yeah…

And I think it’s important to recognize the fact that we both have MS. We both knew that without having to really talk about it, because she disclosed at that meeting, you know? So it relieves a fair amount of anxiety about how, and when you need to approach it. I, when I was first diagnosed, I was already married with my first wife and we had already had one of our children. And so, you don’t worry about it, but years and years later when I was divorced and now I’m dating, I wouldn’t bring it up until it was somebody that I felt was, could be going in a serious direction. And then you just address it. The reactions from the very few people I shared it with in that environment, just had no knowledge. They just didn’t know what that meant. So, so what does that mean in a relationship? So for her and I, it just relieved a lot of that pressure and we kind of knew what could be and what we may have felt in the past and fatigue issues and things like that.

I do think it’s important though, to make a point that Carl and I experience our disability in very different ways. We experience our MS in very different ways. I think often times people say, well, it’d be so nice to have someone who understands, well, I think there’s two thoughts. There. There’s one where, Oh, I don’t want to date anybody with MS like me, because then who’s going to take care of me. The other thought is I really want to date someone who has a similar and shared experiences that I have because they know what I’m going through. What I think is important to say is that Carl and I experienced MS in very different ways. So my experience has been tumultuous. I have had many exacerbations. I lived in toxic mold for two years, which impacted my MS. And, and flared up all of my symptoms. I have used a wheelchair.

 I have used a cane with a seat or a walker with little seed in it when I have fatigue, so I can sit down. My experience has been different than his. So it’s not like all of a sudden, Oh, you’re going to marry someone with MS. And like, they get it. There is still, there are still though there’s growth, to understand how I experience it and to understand how he experiences it.

When we first met, I feel like Carl blamed everything physically wise on age or work stress, things like that. I was, I blame everything on MS. I’m like MS. MS. MS. It’s MS. Ya know? And so when we met, it was really nice to get that balance of, okay, there are some things that are going on with me, I’m younger. Yes. But there are aging things that are going on with me. Carl’s learning that there are MS things that are going on with him that aren’t always aging. So it’s a good balance.

Yeah. It helps us manage our day together as well. We’ve shifted a little bit of our schedules, just because, again, just in most cases with people with MS and the fatigue comes on later in the day, we get a lot more accomplished in the morning. And if we’re off together on the same days, we really plan for, okay, we need to kind of be shutting down about three o’clock or so, just so we can have a peaceful night at least. That’s kind of helped us both because in the early on when her and I first met, just like she shared, I didn’t have an opportunity to recognize some of the things that would say, Hey, Carl, slow down. You need to take a break or maybe not be, take more rest this weekend than you might normally do, because your body’s telling you that, which I wouldn’t recognize in the past.

So it’s been good. I try to head off what could be downtime for her, in the past she would, when we first met, she would go go go, and then just crash for two or three days, if not more. Now, some of that has to do with some other health issues that she’s gotten past. She does have more energy.

But, I still have to remind her, when she does have a hard day or she doesn’t feel well in the morning or eyes heard migraines, whatever it may be. I have to remind her what she’s done in the past week. I, before she gets into that, the next time I try to at least, give her some advice so she can at least get some rest because otherwise she’s down and out. She doesn’t feel well mentally, as well as physically, because she feels like she’s not doing the things that she knows she wants to do too. That’s been probably the most beneficial for us is just being able to understand how it affects each one of us differently. To just kind of make it a little easier as the day goes through.

I think the most important thing is that Carl and I talk about everything. From the time that we met, it was very much like I’m just putting it all out on the table here with you, here’s where I’m at and so everything is a conversation. If it’s, cognition issues that I may have that morning, it’s really saying, what, I’m having trouble articulating what I want to say today. Or my brain isn’t functioning. I’ve got a lot of brain fog. Could we be quiet this morning for 20 minutes or an hour? Could we add X into our day because I need some sunshine. Can we go to the beach today? I’m feeling exhausted. I have fatigue, but I also want some joy and some happiness in the day. Carl’s a very good balance for me because I am go go go crash. I’ve always been that way. Like, since I was young girl, and that’s been the most difficult thing for me with MS is that I find myself very frustrated.

It’s like a, it’s like a race horse. You’re like really want to get into the race, but you’re stuck behind this gate that no one will let you out. You know? So it’s frustrating. You have to learn how to live within this structure and the fact that Carl understands that. And, and sometimes to a point of frustration for me when I’m like, okay, all right, relax on the, I’m going to crash today. Okay. It’s such a great reminder and I’m like, yeah, you’re right. You’re right. I need to back off. It’s important that it has been super helpful.

What we’re currently doing. Because we kind of took a break. When went to Colorado, we had kind of a, this disheartening of the whole system, we were frustrated with a bunch of stuff. When we made the decision to come back to California, we decided we also made a decision that we’re going to get back involved in the community again and see what we can do to help. We found a, another MS. Group self-help group. That’s just North of us, lots smaller, group, not real, super active and stuff. And, the individuals that were running it were really ready to step down.

 It takes a toll when you’re doing these groups and you’re running these groups, I would say five to seven years of running a group is about the max you can do with your energy level. These women had been doing it for 10 plus years.

So about a year ago, we took over this MS self-help group. Of course that’s when the pandemic hit. Right now we’re doing a lot of zoom calls, just like we’re doing tonight or did this morning. But, we do it once a month and we’ve got about 30 people that we reach out to. It’s anywhere from 10 to maybe 12 people a month that tune into our zoom meetings to just connect and make sure that we’re all kind of moving forward during this time. There’s not a lot of walks going on. There’s obviously not a lot of fundraising going on. So, we’re just doing everything we can to just kind of keep helping everybody else.

I think it’s important, especially during the pandemic that, people have that support. We’re seeing a lot of our friends who are having their physical disabilities are getting worse because they’ve been at home and isolated for so long. I think it’s important for us, if we can provide that space for people to get the support that they need and a good laugh at the same time. You know, that’s always a plus.

This is the first time that we’ve worked together. The reason why there’s a hesitation, because I wanted to make sure that identified, what she brings to the table, just in her business background and what she’s been doing with her current activities. She keeps that conversation stimulated and moving forward. With her background in the industry and working for the society, she really has a lot of the backend knowledge on medications or insurance procedures. That’s been extremely helpful to others in the group, which I would never be able to bring to it. So, I, I’m kind of the class clown in the meeting. She’s more of the structure, but yet she brings a lot of energy. The two of us together, I think do a great job. It’s kind of a shame that we couldn’t do more in-person ones when we first took over. Cause I think that would have had more bite than trying to get some of the older generation to, Hey, jump on board with the new guys and jump into a zoom meeting.

I think that it’s also important to say that we took the time to sit down and walk these individuals through the process of using zoom. Carl went to someone’s house and set up zoom for them, even though they’re older people, they need to have access. They meet, we can’t just not have it for them because we don’t think there’ll be able to access it.

No. And I agree with that. I think my point being that if I think they had more one-on-one engagement with us, I think that more people would be excited about trying new technology is really my only point there. And, but she’s right. We’ve got to continue to reach out. I know the MS focus group has reached out to everybody that had a self-help meeting and asking, are they still doing it? How are they doing it? Because their message is the same. As we’re saying, it’s important to just continue to connect with people because that’s the only way they can continue to see what might be ahead of them.

People are alone right now at home.

I’m usually the one that’s like, I have this going on. I think this week I was like, I’m super angry about bed. They’re like, how do you guys feel about vaccines? I was like, okay, don’t even get me started on vaccines. So, it’s just a good play on each other because we’re all go really deep theoretically and looking at policies and regulations impacting disability, Carl, be like, okay, let’s go back up to here. Cause we’re just giving support right now. So it’s good. It’s good. At first I was very nervous to be in a group with him. Well, especially to run it, not to be in it because our communication, like he would already know everything before I would share it, but to run it. Cause I was like, how is that going to work? Because well, like the other day Carl was like, I was very unengaged because I was exhausted.

I had fatigue. I had brain fog. Like I just was not, I did not, I could not function through the meeting. Carl was like, Oh my gosh, it was so rough because like you didn’t engage. And I kept thinking, please engage. Is, you have to have that balance of, being able to get through some of that too. So we play off of each other well.

I come from a background where, we have a lot of monthly meetings and very start on time, end on time. Where’s your agenda. Make sure everybody has a part of the agenda. Going into the self-help group with her and I and her business background, I was afraid it was going to be too much like that. Very cut and dry, like a board meeting. And it’s not, it’s very loose. People are having a good time. We’d had a couple of new members join in, so that’s been good. She had a very successful, she was part of starting a very successful group down in LA that she had mentioned earlier. So I knew she,

It still exists. It’s still running. We handed it off to a girlfriend of ours. Dawnia Marie and she’s the founder of bright side three 65. She has built it out to include teens. That was something that when we started looking at it 10 years ago, there weren’t a lot of conversations around teens who were being diagnosed with MS. I don’t know if that’s because it was hard to diagnose. I don’t know if it was it’s because it’s, not usually the average age that people are diagnosed. Dawnia has taken this group up with these teams and all of these teens are thriving and, Beth and I pass that onto Daniela and that was Tanya’s first segue into, being a part of the MS. Society and, running a self-help group. She took that on and she has empowered other people to come behind her because like were saying, it’s exhausting when you are leading these it, and you know the power that they have and they have to, these self-help groups have to continue to exist, but how do you continue to tap into someone whose energy is spent a due to the, just in general because of MS.

I mean, people with MS. Research says that it’s five times less energy than someone who is not living with MS. It’s like, how do you respect that time? But how do you also build a system where it’s sustainable, where other people can come along behind you and feel included and feel a sense of ownership and empowerment to say, yes, I want to step in and I want to continue this work because I’ve seen the power that it holds for the people that it’s impacting.

One of the things that we have noticed and really try to make an impact on and Sarah, more so ways than that through her business and so forth. But it’s really hard to find support. If somebody was newly diagnosed with MS today, they don’t know what’s next. They don’t really know who to call. They don’t really know who to visit or what resources to tap into. They will reach out to the MS society and they’ll get the navigator information w information, which is extremely helpful, but it doesn’t really put you one-on-one with somebody in your community that wants to help you. It’s supposed to, it’s designed to, but it just doesn’t function well enough to, for her and I to get a call today saying, Hey, I was freshly diagnosed. I just don’t know what’s next, please help. So that’s the hardest part. We need to be easy to access, and that’s what we’re trying to change so that people can get involved.

It is hard because you look at, you’re working within a system that doesn’t necessarily understand what you’re experiencing. There’s a perception of what you’re experiencing and then there’s what you’re actually experiencing with the disease. The doctors, will give you, okay, here’s your next step for a medication here’s this. So the perception is that I’ve given them all the tools that they need in order to, understand this diagnosis, to process it, to get onto medication, to do what they need to do. The problem is then we get these resources and you call an 800 number. Not that is not a great resource, but I didn’t call an 800 number. I called the vice president, the director of chapter services and healthcare access, who was in my position before me, 10 years before me, I called her directly. I didn’t go through an 800 number, but I also am white.

English is my first language. I’m educated. I understand the process now for someone who’s coming into this, that doesn’t understand any of those. Like for me, it was hard enough. Think about someone else. You’re thrust into the system where you have not just one person to call and say, Hey, I hear I’m getting diagnosed. Like this is super scary. I might have to have a spinal tap. I mean, I went through, I’m originally from Iowa. I moved to LA like soon after I’d turned 24. When I was going through my diagnosis, I was alone. It cut me off from everyone. People did not understand how many doctor’s appointments I had to go to, nor did I want to tell them, nor did I want to burden people with the fact that I have to go to a rheumatoid arthritis doctor today, then I have to go to a Neuro-Psychometrist, then I have to go to, I mean, no one, people don’t understand that.

It’s too much, and it’s exhausting to keep trying to explain yourself. You almost end up isolating and backing away from relationships because all you can do at that point is survive. All you can do is what is my next step to try to get through this? I felt very alone in that process. I didn’t have family in LA. I didn’t have the structure in place that I now have in place to support me with my MS. For, for us. I think it’s so important that even if people don’t come to us through our self-help group, like we get phone calls from people, Hey, what can you talk to so-and-so has a friend who has a, a granddaughter who has a sister, like whoever that they don’t go to, the big organizations, they come to the people who have experienced it, who are talking about it.

I had a, I was having a networking meeting the other day. And, I knew that this woman lives also with a, not a parent invisible disability. I said to her, I said, would you mind sharing with me, like, what your experience with that has been, it’s not MS, but like, what has your experience with that been? And when we got off the phone, she said, I want to thank you because that’s the only time I have felt included in a conversation where someone actually asked me what my experience has been, and then say, how can I, based on your experience, what can I do to help? Here’s my experience. Like we have some shared experiences, but what can I do to help you? And so I think we forget that human connection is so huge that one-on-one connection and that’s what we’re trying to do.

So, I did not want to forget important dates. Our very first official date was August 17th of 2016. That’s when she said, okay, you can take me out. I drove down to LA and we had a very nice dinner at salt in Marina Del Ray.

Which he laughs at, because he’s like, she basically took me to the most expensive place in Marina Del Ray on our first day after the dog date, but then we actually had a real date.

Yeah. We had a meet updates at the, early airport actually. But anyway, so that’s a said. Oh, okay. Yeah, so we go down to, salt on August 17, 2016. So when I decided that I was going to propose, I thought the best day for me to do that and to the day to be engaged would be that day, August 17th. Two years later, I proposed to her. We decided that were going to get married conveniently the next year, 2019, cause August 17, 2019 was a Saturday. And that worked out perfect. Right. Perfect for me. So that’s what we had set up. And, I proposed to her at Avila Beach, which is where we ended up being married. It’s one of our favorite places on the central coast. In 2019, that year just came very quickly, too quick.

Before we go on, I just want to put it in there. There are also other things to consider. When you have MS, before you get married, many people that live with disabilities, don’t actually get married because the structure in this country doesn’t allow for them to get married, they’ll lose their benefits. If you have two people, so that was a big thing. Also I was like, Oh, I don’t want to lose my independence. I think I was very nervous. I have never been married. I had never been married and I’m 43 now. At the time I was like, Oh, I don’t know what that entails. And I have to sign something. (laughing)

I was married just once, but had been divorced for 20 years. And, so, it was exciting time for both of us and, but it just came too quickly. I was so bummed because now my, all my dates are all messed up. We ended up getting married. We decided to go the following year, which would be the same, basically the same weekend, August 8th. Here’s how I remember that. It’s the Ocho. Oh, eight Oh eight 20. It’s the ocho, easy for a sports guy to remember. And, obviously with the pandemic, we live stream that for just the few people that were there and, it was a wonderful ceremony, but yes, that’s the engagement. I was just trying to make it super easy. So the MS. Brain fog wouldn’t sink in over the years, but now I’ve kind of got myself into…

Listen, you got it. You’re fine. You’re fine.

You’re golden. Yeah. And maybe I’ll get two gifts. Cause you’ll forget.

Right

Yeah. And maybe I’ll get two gifts. Yeah. Cause you’ll forget.

Okay. We’ve been married since, August of 2020 and, life has been good. We, became empty nesters recently because, my adult children, are out of the house and doing their college and being adults it’s really the first time other than our short time we spent in Colorado together that we’ve had, really to ourselves. So it’s been very nice. We’re really enjoying the time together. We’re making the house even more and more of a home and, it’s been great. We’re really enjoying the time here in the Central Coast. And again, we want to make sure that we’re available to people that could be in the same situation that we may have been in the past.

We are really putting our roots out and really kind of getting involved in the community here with regard to MS and how we can support the community on the central coast, especially. This has been a really interesting year, too, just for growth. I mean, there’s been a lot of personal growth that we’ve gone through understanding, ableism around the pandemic, how it is impacting people with MS. The messaging is impacting people with MS. How the policies are impacting people with MS. We’ve done a lot of educating and a lot of growth as well. What the one thing I’m most grateful for is that Carl and I, regardless of what’s going on, we continue to communicate and grow together. Whether it be, spaces that are uncomfortable for us to grow in, or there’s just new things that we’re talking about. It’s always a conversation and I feel like that’s the most beautiful part about it.

I honestly, I didn’t think I would get married. When I was, after I was diagnosed, I was 32, so I made a decision that my symptoms and my fatigue were so bad. I was like, if I were going to want to have a child, I need to make that decision now. And when you’re 31 32 and you’re single and just got out of a long-term relationship. And now you’re like, Oh my gosh. If, if my fatigue is going to get worse and I’m going to get more debilitated, this and that, it kind of speeds up. Do I need to start having a family? Is that something that’s important to me? And I do feel like Carl and I have talked about that. And, and I, I don’t have any of my own children, but I made that decision because I knew I wouldn’t be able to give the time or energy needed to a child.

And is that difficult for me? Yes. Like that. I struggle with that decision, but I think that was the best decision for me and for any child. What I think is just most important is that we continue to have those conversations.

Now that we’re married. It’s easier for us to identify what our goals are and how we want to move forward. That stuff that we talked about before we got married. Whether it’s the RV that we park in some national park for a period of time,

I need an RV and a pool and a warm tub, not a hot tub, a warm tub,

Right. Exactly. The marriage has helped us kind of, okay, great. Now, now we’re ready for the next step. We actually, yesterday just completed all of our trust and will updates and all that stuff. So…

I think that’s also an important point to make is advanced directives and medical power of attorney. That is something that young people do not look. They are not thinking about medical power of attorney. You’re not thinking about an advanced directive. For me, I, I think that it’s extremely important for anyone who’s living with a neurological disease or disorder to have a medical power of attorney and an advanced directive. My biggest fear is that if my disease progresses to a point of debilitating, to me, debilitating me to a point that my vocal cords no longer work, that medical power of attorney in that advanced directive are my voice, these conversations with Carl and, my friend who is also the power medical power of attorney, they’re important. They know what my wishes are. They know what I want if my MS gets to a certain point, if there’s, if anything happens.

And so I think it’s important. We are planning and Carl and I joke around a lot because I really never adulting, to be honest with you living in LA, I felt like I was like on vacation. I came from Iowa, like, so I never really adulted. I was doing turbo tax for my taxes forever, and Carl comes into my life and now I have structure and my, yeah, it’s very adulting. Yeah. I think it’s important in any relationship for anyone, with MS in any relationship to talk about their needs as far as when we age and what that looks like.

One of the things that, I think is scary for people that might be freshly diagnosis. There are a lot of spouses and a lot of partners out there that are super supportive that haven’t been, that have never been diagnosed or don’t really know exactly what they’re feeling. But, we’ve seen a lot of that with some of the other projects we’ve worked on that we believe and so forth. We’ve seen it with, people in our own self-help group and the groups that we’ve been involved with. There is opportunity and like we’ve stressed so much about in our relationship. It’s just about the communication. If you can talk openly about what you’re feeling and how your symptoms are affecting you or what your expectations might be as a partner or spouse that will really help through some of the tough times. Yeah.

Absolutely. Yeah. That goes back to learning through your process, your own journey of MS. Learning, what it is that you need. And how do you ask for that?

There’s a lot of people in our close circle that experienced what we experienced. Do we have the benefit of that in some situations? Absolutely. However, that’s something that can grow within other individuals as well. Again, they just have to continue to talk about it, and we’ve just been fortunate enough to have that support immediately.

We have, that’s a good point. That’s a good point. Yeah, we have. I think that for some people, it takes a long time to reach out for that support. And it’s a grieving process. I think that the whole process of MS at diagnosis is a grieving process. Each time you kind of lose some of your abilities, I guess, in certain areas, it’s a grieving process. We’re constantly grieving some loss, but there is also this, I don’t exactly want to say that MS is a blessing. Although I would say that it has blessed me with so many amazing people, this amazing like support system of just people that would show up for me at any time that I ever needed. And these relationships are not surface relationships. These relationships are built on very real, very traumatic experiences that some of us go through when we are wrestling and dealing with MS.

To have that support system and also to have somebody who takes you from this kind of negativity point to, yeah, it sucks. Let’s now move here. Like we all need to recognize that. Yeah, it’s grieving and it’s sad and there’s loss. There is a lot of loss, but what have we gained in this? And I have gained more than I have lost in this process. We have to start normalizing conversations around MS. We have to normalize conversations around disability. It is not my fault. It is not Carl’s fault that we were diagnosed with this disease, nor should we have to hide it as if it’s a dirty secret that no one else can know about. We both want to empower people to use their voices, to not feel isolated and not to isolate themselves that they’re, you’re not alone. There are so many of us that have gone through it.

I have run the gamut of the not only the physical, but the mental issues and symptoms of MS in a much different way than Carl has. There are people here that can talk to you about it. It may not be a big conglomerate organization, but you can find people get online. Look for people who are talking about MS. On social media platform’s, start following their conversations, even if you’re not comfortable disclosing, but start educating yourself so that you don’t continue to internalize things about your worth. That are not true. You have value, you have worth.

Over and out. It was an incredible interview. Probably one of the very few times, we will go into that much information when it is recorded. We hope you enjoyed it. Happy MS. Awareness month. We hope everyone stays healthy and stays well.

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at [email protected] with podcast episode ideas, as well as comments and questions.

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

GUEST: Dawnia Marie, MS Advocate, and Founder and CEO of Brightside 365

https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E10_Dawnia_Marie_is_Brightside_365.mp3

March is Multiple Sclerosis (MS) Awareness Month, and we’re celebrating with my very dear friend and fellow MS Warrior, Dawnia Marie. We talk about everything from the pros and cons of self-help groups, to our relationships with providers and celebrating our diagnoses. MS is a debilitating disease, but it doesn’t dim our light. And my friend Dawnia Marie, a true representation of Brightside 365, is an amazing example and reminder for all of us to – keep living! #DisabilityPride

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Dawnia Marie was born in Pittsburgh, PA. At the age of 9, she moved to Los Angeles because her father was pursuing his music career. Dawnia resided in Inglewood, CA and graduated from Inglewood High. At the age of 20, Dawnia moved to Atlanta, GA. She received an undergraduate degree in Business Administration from NCCU and a Masters degree in Corporate Finance and Project Management.

In 2006, Dawnia’s body went numb from her chest down and in her hands. After a trip to the ER, a neurologist visit, and hours of MRI’s, Dawnia was diagnosed with Relapsing Remitting Multiple Sclerosis. In 2013 Dawnia moved back to California and in 2014 she was taking a class through the MS Society at USC. Through the class Dawnia began volunteering with the MS Society. This lead to being featured in a USC magazine, assisting in the office at the MS Society, being flown to Seattle, Washington to film a resilience campaign video, featured on the cover of the MS Momentum magazine, featured in multiple articles, becoming a District Activist Leader which she visits local government offices, flies to the capitol in California and Washington, DC to advocate for bills that benefit people living with MS and other sicknesses and diseases, was a part of the WeAreIllmatic campaign for women of color diagnosed with MS, an interview with KTLA regarding the Marilyn Hilton MS Achievement Center at UCLA, a video for Yahoo Lifestyles, We Believe campaign video for the MS Society, and asked to participate in a video for the Hilton family.

The most important thing was becoming a self-help group leader. Currently, Dawnia is a self-help group facilitator for adults in their 20s, 30s, and 40s for the National MS Society. Seeing a need for a self-help group for teens, Dawnia spearheaded a self-help group for High School students and quickly spread to College Students called MS Youngsters that began in 2017. The MS Youngsters lovingly refer to her as their MS momma.

In 2020 Dawnia received the Inspirational Person of the Year Award for the Southern California/ Nevada Chapter of the NMSS. She also received the 2020 L.O.V.E. (Ladies Operating Very Effectively) Overcomer Award. Most recently she received the 2020 Volunteer Inspiration Award.

Dawnia is a caregiver for her father who is also diagnosed with MS that is now bedridden. Since he lives in Pittsburgh she coordinates everything by phone, trips back to Pittsburgh to go to doctor’s appointments with her dad, has relationships with every person involved in his care, and family that still lives in Pittsburgh. True to her reputation, she maintained a positive outlook even after her diagnosis. Dawnia knows that God wasn’t bored one day and allowed her to be diagnosed with MS. She knows there is a purpose in every challenge and avoids asking “why me?”. Dawnia’s positivity can be attributed to her ability to see the bright side in every situation. She desires to show people another perspective when life presents seemingly insurmountable challenges. Dawnia is an example of what it means to make the necessary adjustments in order to continue living a fulfilling life. Dawnia is determined to not compare herself to others, but to focus on her blessings and who God designed her to be as she continues to live on the bright side!

Today, we’re talking with my very dear friend and fellow Multiple Sclerosis Warrior, Dawnia Marie, and we’re here celebrating MS Awareness Month.

Dawnia was born in Pittsburgh, Pennsylvania, and currently resides in Los Angeles, California. She holds an undergraduate degree in Business Administration from NCCU and a master’s degree in Corporate Finance and Project Management

She has been featured in MS Momentum Magazine, and several National Multiple Sclerosis Society campaign videos, including living with resilience and we believe. She is also a District Activist Leader, where she works with government officials to promote MS policy and legislation in both Sacramento, California, and Washington, DC. However, Dawnia says the most important thing she’s done was become a self-help group leader. She’s currently the facilitator for the YPG Self-Help Group, which is a group for adults in their 20s, 30s, and 40s. And, seeing the need for a self-help group for teens, she founded MS Youngsters in 2017. This group of high school and college students lovingly refer to her as their MS Momma.

True to her reputation, Dawnia does not let MS or anything else stand in her way or dim her light. She has an amazing ability to see the Brightside of every situation, and desires to show people another perspective when life presents seemingly insurmountable challenges. Dawnia is a wonderful friend and example of what it means to make the necessary adjustments in order to continue living a full life. She is determined not to compare herself to others, but to focus on. Her blessings and who God designer her to be, as she continues to live on the bright side!!

Good morning, my friend, and welcome to Incluse This!

Good morning. Thank you for having me.

I’m so happy to have you here today. We’re celebrating Ms. Awareness month together. Woot woot.

Yes. Woo Hoo!

I feel like it was just March or it’s still March or March never ended. So hasn’t it been Ms. Awareness year?

I think so. I really do. I think we shouldn’t have an MS awareness year. I wonder if we can do that. That would be awesome because people need to know. Good question.

You were officially diagnosed with multiple sclerosis in 2006, and I believe you were diagnosed when you were living in Atlanta, correct?

That is correct. I, I was living in Atlanta and probably should have been diagnosed in 2004, but yeah…

Definitely in Atlanta and thank God for my mom. She was like, you need to go to the emergency room.

Yeah, thank goodness. As a black woman in America, how would you describe the care that you received from your providers? One of the things that we’ve really talked about are the inequities in healthcare for the black and Brown communities. I’m wondering if you feel that it took longer for you to be diagnosed because you’re a woman of color. Can you talk about some of the barriers that you faced with providers and with the healthcare system during the diagnosis process?

I guess for me, it was a little different. My father was diagnosed with primary progressive MS in 2004. When I first started feeling the symptoms or feeling Ms. They, the doctor, had me go do all this testing and all of that. And I was 24 at the time. And, after everything was over the doctor’s like, nothing’s wrong with you? Like, I don’t see anything. I’m like, hmmm. And I said, Mike, I was like, my dad was diagnosed with Ms. He’s like, Oh, that’s what it is like, aha. It’s like, and I’m not going to listen to you. And so my symptoms, they went away. I may have adjusted, I don’t know, but I wasn’t dealing with them. And then, wo years later when my body went numb from my chest down.

What was that like? Did you just wake up in the morning?

It was like gradual. Like, I really felt it, in like my stomach area and like my hands and, it wasn’t numb like, I’m going to collapse or anything like that, but it was just like a weird sensation throughout my body. I’m like, what is going on? And that’s when my mom’s like, you need to go to the emergency room. And, I went there and they’re like, you need to see a neurologist, but like, so that the diagnosis part of that, like when I went to a neurologist and he had me do like these hours of MRIs and he’s like, yeah, it’s consistent, with MS. I think for me the, treatment after, and this is like, I just had to fight for it. Example when I was in Atlanta, it was, physical therapy. I’m like, no, but that’s what I want to do. It’s more so I just had to keep saying what I want.

Even now, like, I have been blessed, I speak up. And so, people haven’t been able to, take advantage or like kinda like she crazy wait, we’re not doing that, but to keep asking. I’ve been fortunate to have a really good, support system, with my doctors and my doctor in Atlanta, she was a black woman. She’s a, MS Specialist. It was, I was a little concerned about leaving her in Atlanta cause I’m like, Oh, no I’m about  to go to people that don’t care. I find this amazing neurologist right now, who I, we joke because another friend of mine goes to her and she’s like, I’m not messing around one day and say, I love you. I was like, I know, right. We’re ending. I was like, okay, I’m not going to make it awkward. Say, I love you. Yeah, I, but I’m grateful for that. I don’t want to, bash, the doctors or anything, but it’s like actually have a good experience, but also speak up.

I think that’s important to advocate for yourself. Go, no, I want to do this. I want to, whatever it may be. It’s been great, but even, my doctor now, she’s an MS specialist and she’ll, actually she won’t push medication on me, it’s like do you really wanna do that? So because she’s looking at the, long-term effects or like, let’s try something else before we just medicate the symptoms. I really appreciate that about her, I really do.

I would say I’m actually envious of your current care team. (laughing)

Yeah. It probably goes to be a little crazy. Let’s just listen to the net real quick. (laughing)

No, I think that you’re an incredible advocate for yourself and for other people who are diagnosed with MS and living with MS. You do have a really good care team in place that you have fought for. I would say that it does have partially to do with your ability to articulate, advocate and say what you want. Also the location that you’re in Los Angeles, you know when I moved out of Los Angeles, I really that’s what I really learned, how many opportunities there are for care in Los Angeles as compared to other places. Yeah, you do, your providers are amazing. They are amazing. I know some of them, so I do love them.

You started to get involved later around 2014, when you moved from Atlanta back to Los Angeles, you got involved with the Ms. Society and the UCLA MS Achievement center. It’s interesting for me because I feel like, and please correct me if I’m wrong.

We often get asked, well, when did you start getting involved? And the answer to that really is a range of times. It could be, for me, it was right away because I think if I have structure, I somehow feel I have control. For other people, it takes them longer because they’re still processing the diagnosis. Yeah, I don’t know, still kind of living between these two spaces and then other people who really don’t embrace that MS at all, and don’t get involved at all. So, what prompted you when you moved back to LA, what prompted you to start getting services or, UCLA MS Achievement center is really cool just for our listeners who don’t know, it’s a space where people with MS go there, you do artwork, yoga education lessons on, I think I took a class there on newly diagnosed, for newly diagnosed.

I think it was newly diagnosed, Mhmmmm.

They just offer these great programs. What prompted you to get involved there? And then, I mean, that basically is what drove you into the work that you’re doing now.

Yeah. So, I’m going to back up to Atlanta because, Atlanta to get places you have to drive. So, it’s not like that when you say I’m going to run up the street up, up the street could be 40 minutes away or, whatever it may be. I, I actually was seeking out the, MS Society for my dad. For some reason, it didn’t really like, become a priority for me to, learn stuff on my own. But also the MS Society was very far from where I worked, like for me to go from work and go to where the society was. It could take me two hours, because of the distance and traffic. And so, it wasn’t really accessible, but I, I didn’t even, I didn’t think to do, quite like, I, I don’t remember getting anything in the mail about classes or anything like that. But, it’s amazing that I even got involved with the society when I moved back here because, the only reason why I was able to start, with the, National MS Society is because I didn’t get a job, I thought I was going to get. I applied for a class at USC. They, they used to have a partnership with a USC and the Ms. Society, called optimal Living.

I feel like I took that too, yeah.

Where they paired you with a, they do, yeah. Did you? They paired you with the P PT and OT student, honestly, I’m like, what the heck was the OT? I don’t know what that is, but the OT was probably the most life-changing person, for me, just as far as taking a shower, like I, my fatigue would kick in, while I’m in the shower, but like I’m using bar soap and I’m thinking, and now it’s time to get out. I’m like, I’m too tired to lift my leg to get out of this tub. She’s like, why don’t you use a liquid soap? And I was like, shut up. That is so smart. I was able to get in and out of the shower with no problem, but like this little changes like that, because of the OT. But, I took the class and the amazing thing is that the class was full.

And, literally like a day or two before the class started, I got a phone call saying, do you want to come? So literally, and I joke about the lady cause we’ve become friends. I was like, so if I would’ve had an attitude with you when the class was full, you wouldn’t have called me to say, Hey, there’s an available class. So that could have gone like crazy. Like I sent you. It’s like, no, don’t do it. You know, just wait. By me taking that class, that led to me volunteering with this society and learning about the Marilyn Hilton MS Achievement center. So, that’s how I got a part of that. Just with the society, I am like, I wasn’t diagnosed with MS because God was bored and he’s like, let me give her something.

I love that line. Right? Let me give her something.

Yeah. She may have a little extra stress in a right, like, Hey, come on. Right. I see you in living life freely and not worrying about where to step and you can just get in and out of this. I hear you go, but I’m so grateful. I, I actually called it a privilege, the other day to be diagnosed with Ms. Cause I’m able to help other people and just have an understanding.

And, just really quick back to the doctors, when I first came, I had to go to County hospitals, because they didn’t have insurance and just seeing how people were treated in County and like, just don’t know better. I’m like, man, I just, I could stay here all day. It’s like, no, you can say this. Or you can do that. Or, you need to ask about that, like whatever. But, that is like the County hospitals are near and dear to my heart, because it’s like, people need help and don’t understand. And, that isn’t going back to where we were, but…

No no, you’re fine. I just wanted to mention, I worked in, County hospital in LA and the level of care and just the provider knowledge is outstanding. There are amazing providers within the LA County department of health services. The the problem again goes back to kind of the structure within which they have to work. Right. It’s like the wait times. There’s not enough time for education. I mean, anyway, so yes, I, they, the County hospital system also holds a very dear place in my heart. Anyway, off that tangent, we’ll go back to, Marilyn Hilton MS Achievement Center.

Which was amazing. I, it’s funny. When I first started going, they do things for, to help with cognition and one of them is word scrambles. When I first started going, I was like, what language is this? This is not a word telling me to unscramble. Like, it’s crazy. And so, I would just look at it and I’d get like two or three of my Oh, okay, coyote, got it. As time went on it helped me, like, I can unscramble the words now I can just glance at it really quick. I’m like, Oh yeah, that’s institution, or whatever it may be. You don’t realize, and I was just telling

Is that part of MS?

Mmm Hmmm, but also I mean getting older. I mean, just getting older too, like you want to, that’s why I just, said to the Ms. Youngsters, I’m like, you guys I’m like, do puzzles, do play games.

I’d like to, I play games on my phone. Whether it’s a word game, a math game, a puzzle, anything that causes my brain to use different areas. I do that, just to help, just to help, so that I’m not dealing with brain fog like that. So yeah. But, games are important and it’s like, yeah, you think it’s not, but it is. It really is.

Would it be different? Like if I’m sitting in working all day, right. Like doing emails or doing work, is that different than if I would sit down and do a crossword puzzle or unscramble letters is that’s probably more challenging to my brain. Right?

Yeah. I mean, but it depends on your work. Like if you’re responding to emails that you just go, yes, no, yes, no. Then yeah. I mean, but answering emails can be complicated too, because sometimes you have to come up with a solution, think about it and all of that. So,

So, really, really the point is to challenge your brain.

Yep. The point is to challenge your brain and don’t feel like, well, I’m not playing a stupid game. I’m not doing this puzzle. Why am I, whatever, it’s like, no, do it, and even like a friend of mine bought a puzzle for me, for Christmas and, it’s called, it’s calm. It’s like, a bunch of flowers and it’s a great puzzle, but it’s like, I didn’t realize that putting a puzzle together would be so difficult now, and just even with your hands using your hands and all of that. And so I’m grateful for that. Always open, to do things and whether it’s painting, coloring, get your creative side going. So, yeah. But it’s…it’s fun.

I tried knitting, I tried knitting. It was didn’t go well.

It’s okay. It’s okay. We can do it. We can get a little peg board. We can try knitting or crochet. We could do something. I think maybe once a month we could have our arts and crafts.

Oooh, yeah. We should do that. I love that.

Yeah, just don’t ask me to be in a book club.

Okay. You, so after the Marilyn Hilton MS Achievement Center, you kind of dove into like all of this incredible advocacy work that spans like seven years, and you’ve done videos for the Ms. Society. You’ve done, a lot of different work for them, which I shared also in your bio at the beginning. What you said in your bio is that you say the most important thing you’ve done is become a self-help group facilitator. And that’s really where your passion is. Can you tell us about how you got started and why you feel this is the most important and impactful area of your work?

Yeah. And just really quick, with the MS Society, I, I started actually volunteering, with them first and doing like reading when they had scholarships, reading those applications and stuff like that. It took months to apply for me to apply with, Marilyn Hilton MS Achievement Center.

Oh, okay. So it was the opposite.

Yeah. It kind of simultaneously, it was at the same time, it’s like class. Okay. You can go to the office, but you still have to apply to that. Been, at Maryland Hilton, for a long time, which I love so much, but the self-help group. Yeah.

This is where our lives intersected all those years ago in March of 2013.

Yeah. I, the funny thing as a friend of mine told me about why PG and who was like, wow, there’s a support group for people my age. And yeah. I would go and I would forget. I remember at its once a month, second Saturday, 10 to 12 and 1150, I’m like, Aw, I didn’t go. Or anything like that. I just kept forgetting. And I’m like, man. I like went a couple of times and then it’d be forever. I probably like, it took months for me to come consistently, but it was like the best thing. Just learning this different little tricks and things I qualify for and being able to hang out, got new friends, and it’s like, Sarah, can’t get rid of me, Beth. Can’t get rid of me and I’m going to call. And that’s what I do. Now I know to call on purpose just to say, I just wanted to say, yeah, it’s just funny to me.

Oh my gosh…you’re lucky I pick up the phone. (laughing)

But yeah. Yeah. It’s okay. You better that you better.

For our listeners who don’t know, could you talk about what YPG is?

Yes. So, young professionals group, is what I was…

Hold on. I want to put a caveat on that. Yes, it is named young professionals group, but we really pushed hard against that because I just want our listeners to know that not every young person who is diagnosed with multiple sclerosis is able to work and be a professional in the capitalistic definition of productivity.

Yeah. Now it’s called youthful peers group.

Youthful Peers Group. I love that! Okay, go ahead. Sorry.

Yeah. You guys help come with that name? Cause I was like, I can’t be coming in here doing this, but you want to back all the way up. I was coming and at the same time, the two of you had to go and do some amazing things. And I was like, Oh crap. To be asked, to keep it going, it was like, huge honor. Like whenever you guys would come and I’m like, Oh wait, this is who started it and all of that, but I love the self-help groups. I think it’s extremely important to have that community to know that you’re not crazy, and your symptoms, it’s like, no, that actually is Ms. It’s okay. Or you should call this person or your doctor sucks. You need to ask for an MRI and, just to be there for people. It helps them understand MS and how to advocate for themselves and then programs available for them.

And, yeah, it just it’s wonderful. And.

So, YPG was started in March of 2013 and my friend Beth, and I actually started it and it’s for people in their twenties, thirties, and forties who have been diagnosed with multiple sclerosis. The reason that we started it is because I can’t speak for everyone, but there are a majority of stories that we hear about self-help groups. When people who are newly diagnosed go to a self-help group, they have very poor experiences. They’re intimidated by durable medical equipment like wheelchairs, walkers, canes. That’s intimidating. When you walk into a new space when you are freshly diagnosed, right? I mean, it’s just uncomfortable. Also. You have to look at the timelines of when people are diagnosed. 30 years ago, we didn’t have the options for medication that we have now. The progression of the disease is also different between kind of these different generations. I guess you could say, we wanted to look at the experiences of young people, twenties, thirties, and forties, dating marriage, pregnancy doctors, and really what we built.

I’m reading this book right now, it’s called care work. They call it collective web. I feel like that’s what we built with YPG because it is this self-help group. It also is this community of young people that I know at any time, regardless of if someone hasn’t been to group in a while that if I need something or if I need help, anyone will step up to the plate for me, anyone in that group. I think it’s important to recognize that people have fear of self-help groups, but also I love how you’re talking about the positivity of the self-help group, like what we get out of it.

Right. Yeah. I totally agree. And it’s, funny. I I’m like, what is it best making you not want to come because we’re on zoom now. Like you could come on, let’s say you don’t have to get on the camera and you can mute your phone and just listen, ? Cause it’s important. I think if the trick should not come in the group, because it’s like, you feel so much better once you’re done or, when you leave or just coming on, it’s like, wow. Especially when you’re not surrounded by people diagnosed with MS because now you have somebody that understands, and when you say I’m tired, the person doesn’t go me too. It’s like, no, you don’t know what my tired is, type of thing. Now when we say we’re tired and group, they’re like, yeah, like you understand. If this is fun, having that understanding, yeah, I totally agree.

I love self-help group. I do. I think it’s such a great space for conversations and shared experiences and just building kind of this network of support for yourself and for others. Right? So you really, when Beth and I, so Beth and I ran that for about four years or for about four years. Then, we both had changes in our lives in 2017 and you came on board as amazing, thank you. Amazing changes. You came on board to facilitate, and that was for Beth and I, for a self-help group when you lead it for that long and you facilitate it and you’re so invested, it’s hard to walk away from it as the facilitator because you’re fearful that what if it doesn’t last? What if these people don’t continue to get the support that they need and you stepped up in such a big way to facilitate that and keep it going.

Not only did you step up, then you basically like built it out and then you started a teen group you’ve been running, facilitating the YPG group now for gosh 17. So five years almost. Tell us about this teen group. Yup. 2017.

Wow. Yeah. I’m not good at math. Sometimes I’m like fingers, fingers, fingers. It’s so funny because, as soon as I started, I think I took over officially in July and in that first group, there was a teenager in there and he was not a mature teenager. He was like the annoying little brother teenager. I told his mom, I was like, I feel like we’re corrupting your son by him being in his group because we’re talking about adult issues and he’s a freshman in high school, like wanting to know like, what’d you get on your test or, anything like that. That’s what made me start, the youth group, the, at the time it was cost 17 and under, and it was just me and the young man for about a year. And, I’m like one day there’s going to be another youth or, there’s going to be another younger person is going to be great, blah.

Finally we had somebody else come and I was like, we’d have a new Barbies in and all of that. Then, it, again, it went maybe a year. It took a while for, someone else to come. I just, part of the problem with P pediatric MS, is that they don’t want to talk about it. There’s that embarrassment, not taking, not even wanting to accept it’s like, I’m invincible. I don’t meet this, but, fast forward, the group has grown so much. Like we had, I think right now there’s like heavens Chine of 15 something. I know I have to look and it’s become an international group. Because of COVID and as being in, I can’t even blame it a hundred percent on COVID because, we, the, maybe the fourth person that joined was in Arizona and what’s very common is that the parents reach out to me and then they just wait for the younger person to go, okay, I’m ready now.

When they come, they’re like, Ooh, like, I’m so glad I did. But, they are my babies. They call me their Ms. Mama and I’m okay. I would do turn into mama bear when they’re not being treated right. Or, anything like that, but it is, the groups are, like extremely important to me because I want them to live life and not feel like they have to give up certain dreams and stuff like that because of a diagnosis. Actually the reason I didn’t join a group was because I wasn’t old and trying to retire. I didn’t, I’m single with no kids. I’m not trying to be in a group of people that are retiring and what was me. That was similar, for the young man, he’s, high school or now you’re in this group with older people. I’m like, I know how it feels, let’s fix this.

But yeah, they are amazing. Amazing. Yeah, I don’t want to start talking about them cause we’ll be here for three hours.

We will be an actually you have a new group member from Sweden.

Yeah. I actually, she’s going to be meeting the group room for the first time today. I’m like super excited about it, but I just,

I hear it in your voice.

I love it. Yeah. I’m just like, Hey guys, come on. Like, we’ve been doing, the M Ms. Youngster has an Instagram page. We’ve been doing lives, throughout the week. Like I have no idea who’s going to pop up on the screen, like I have today. Who out interview? I don’t know, but it’s fun. Ben have been able to encourage people that have been following the Ms. Youngsters page, but not really, stepping out there to say, Hey, like I want to know about the group. We just been trying to encourage people like reach out, it’s okay. And, also realize how blessed we are and the us that we have, certain things as far as like the internet and, being able to talk freely and not being judged.

Just from, looking at what’s happening around the, so I don’t, I no longer take, logging on the internet and just, clicking wherever I wants to for granted. Cause it doesn’t have to be that way. Right. That’s so true. But yeah, those are my babies though.

You are celebrating 15 years of being diagnosed. Congratulations.

Every, every may I celebrate, which I love and absolutely, you’ve come to my celebration.

I have, and I never celebrated my Ms. Diagnosis year until I met you now, since then, since we’ve been friends, I celebrated every year, my friend every year.

Awesome. I don’t feel like I’ve been invited.

Well, it’s not a party. It’s like, I just celebrate it by myself. (laughing)

We have to fix that. You better call me. I don’t know. We’ll figure out something.

Okay. This takes us to the huge party that you’re throwing in. May I am. I want to talk about that because you are being honored. You have, I want to make sure I get this right. In 2021, or excuse me, in 2020, you received the inspirational person of the year award for the Southern California Nevada chapter of the Ms. Society. You also received the 2020 love ladies operating very effectively and the 2020 volunteer inspiration award. Now you’re going to have this huge party in May. I want you to tell our listeners all about it because it’s incredible.

First of all, I was shocked when they told me at the beginning of this year that I received that for 2020. Cause the Southern California one was last year, in January I got that. A year later this and I was like, Oh man, like we have to do our own celebrations because of COVID, ? And so there, like, Oh, do like a little something. In December my sister in law, she’s amazing. She was working with an organization that had a virtual event and I was like, Oh my gosh, this is so neat. Cause you like, you create an avatar and you can literally walk around and do everything on your own. It was like, gosh, she feels so good to feel normal again, with my walking, like not worried about losing that balance, you can even dance, there. And so, yeah. I found out about receiving the I’m like, okay, I was like, what can I do? And I’ve thought about that.

I was like, okay, let me look at the date. I was like, okay, can’t do February that’s too soon, March. No, April the walk. I was like, may I was like, I can do man. I’m like, let me look at the weekends in May. I’m like can do the first weekend. That’s one of my best friend’s birthdays. Can’t do the second and the fourth weekend because that is the adult group and Ms. Youngsters. I got to the third weekend, it was open and it’s the 15th of May and that’s also 15 years that I’ve been diagnosed and I’m like, Oh, this is perfect. And so on May 15th

Serendipitous.

Right. Right. So, May 15th, we are going to have a virtual event and it is going to be from 11:00 AM to 4:00 PM Pacific standard time. There’s going to be an expo where you can meet different, go to different vendors.

All of that, like you’re walking around a convention center and then there’ll be a panel of doctors. A quick little awards ceremony cause it’s myself and another gentleman, his name is John strum. We live close to each other and we both received the award. Were like over 170 people that, were nominated and they picked the 11, Oh my gosh. Yeah. So were two of 11. And so we’ll do that. But then there’s the house of grooves. It’s going to be a concert, just trying to get different artists. There’s going to be a comedian and I am so excited about it. After the dancing and everything, we’re going to go to the beach and have a firework show and just be able to talk to people and like, literally it is like your avatar walks around, you can walk up to people and talk, you can have private conversations, you can do all types of stuff.

I, yeah. I, when I tell you I am excited and what I wanna do is I don’t want to have a set price because everybody’s financial situation is different. Like I’m on disability. I know there have been a gazillion events that I could not afford, because of my income and then the pandemics going on. People are losing their jobs, not being able to afford housing or pay their bills. That’s like pay what you can afford if you can’t pay anything. Like if you can’t afford, just to let me know. Like when I tell you I’m so hype about this event, cause I’m like, I’m giving people a few hours to just feel and I put normal in quotes, but you under, if you’re dealing with, any type of disability or sickness or whatever, you understand what I’m saying, when I say feel normal, I just think is going to be great where it’s like your avatar, like can dance, like it’s do the running man do swing, do hip hop robot, but it’s just, it’s fun to be able to dance and there will be performances.

It is all said and done, you will feel like you just had a night out on the town and you could be watching in your pajamas. You could, all you need is a computer, laptop, desktop. Cause there are certain function keys that you’ll need, to like, if you want to shake somebody’s hand clap. If whatever you want to do, you just use the keys on your keyboard, but nobody will ever see you. Yeah, I’m just, I’m excited about it. That’s May 15th, anybody that’s interested cause we’re still like developing the site and everything. You can just reach out to me on Instagram, Twitter, or Facebook. My name is consistent. It’s Dawnia Marie. That is D as in David, a, w, N as in Nancy, and then Marie. And yeah, I’m excited about it. Hopefully, everything will be up within, by April, and get registered and all that fun stuff.

But it’s such a great event. It really is.

I can’t wait. I’m so excited me.

Either. I’m just, I’m like looking at the different artists. I’m like, okay, like, wait, we have to do this, but the comedian, I love him. He’s great. He’s actually a friend of mine, but he’s been like on television and doing different things. So he’s super funny, but yeah. I just want people to have fun, not like, it was all right. Like I wanna have fun, fun.

We need some fun, fun.

Yes, yes.

Before we go, how can our listeners become MS Allies?

My biggest thing is always find the bright side of every situation and also to keep living. Don’t feel like you cannot accomplish the things that you had planned before. Just find a different way to do it. I, I am very big on find the bright side of the situation and it’s like, okay, I’m diagnosed with MS or diagnosed with whatever. What can I do different now? What, why am I diagnosed with this? And I, I don’t know. I just, I just, my biggest thing is keep living. Don’t give up on life, be uncomfortable with stepping out of your comfort zone, and do it like this, do it regardless of how you feel. Yeah. For someone say, do it afraid. It’s like, yeah, like, go ahead and do that because, it’s so much better. Like, yeah. I think the results will shock the crap out of you.

Like, man, I thought it was going to be this. And it’s like, no, it’s not. So yeah. Just keep living. That is, you know what I say?

How can our listeners who don’t have disabilities or don’t have Ms. How can they support people with MS or become, allies of people with MS?

Yeah. Well, one thing they could do, if you want to volunteer with the society, but if you see someone, just ask, don’t assume anything, don’t compare them to someone else because MS is different for everybody. But come treat. When you meet someone, diagnosed with Ms. Treat them like you don’t know anything about it and let them talk to you and you not talk at them. That is what I say to do.

I like that. I appreciate that. Thank you so much for being on today. Dani, I’m so grateful for you of course. Oh, of course. So grateful for you. And I can’t wait for the event. I’m so looking forward to it,

Me either, and I really need to get working on it seriously, but thank you so much. I love what you’re doing and hope everyone takes advantage of the info they’re learning.

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at [email protected] with podcast episode ideas, as well as comments and questions.

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

Wednesday, March 17, 2021

GUEST: Molly Bloom, PhD, Inclusive Design Researcher, Adobe

https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E9_It_s_a_Love-Hate_Relationship.mp3

I’m thrilled to have my very dear friend and colleague, Dr. Molly Bloom, back on the show to explore our relationships with medical providers, in the context of inaccessible structures. How do we, even momentarily, balance the power differential? Our medical records impact our ability to receive services, so why aren’t they easily accessible and amendable? When immune compromised people are dying of COVID at the same rate as those aged 75+, why are we deprioritized? If getting the best care comes only because we’ve advocated for ourselves, have we made advocacy the thing that determines our best care? We are pondering these questions and more this week, so don’t miss out!

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community.

Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin.

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity.

Today, we’re talking with Dr. Molly Bloom, and we’re talking about the love-hate relationships we have, including those relationships with our medical providers.

Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community.

Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin.

We’re more than halfway through this season. And I’m so thrilled to invite my very dear friend and colleague Dr. Molly Bloom back to the podcast today to talk with us about this very layered relationship we have with the inaccessible structures we live within.

I am like super happy for us to be back here today to have this conversation. I woke up this morning angry and agitated, and started my day with the news, which is never really a good thing at 6:30 in the morning on a Saturday. However, I started off going through Twitter and I was reading some of the messaging around the vaccine rollout. I just think that as we’re going to launch into this conversation around, it’s a love, hate relationship. Although it was intentionally set up to be a conversation just specifically about provider and patient relationships. There’s a lot of love, hate relationships going on right now for people within the disability community.

And to touch on that, a little bit, on March 15th in the state of California, people with auto-immune issues, weakened immune systems, they will be able get the vaccine starting on Monday in California. And a friend wrote me a text message. She said, I just wanted to give you a heads up. There was, this was very sweet that she did. I want to give you a heads up that on Monday, you can start enrolling to get your vaccine shots. It just set me off on this whole tangent about ableism. Also, I saw, a tweet this morning about people getting backlash from the community because they got their vaccine. They have a weakened immune system or auto immune compromised got their vaccine before so-and-so having to prove that you actually deserve or are worthy of getting your vaccine even on Monday in California, when we’re able to be able to get the vaccine, we have to actually show a doctor’s note.

So, there’s kind of a love, hate relationship going on with a lot of things in our lives right now. What are your thoughts on that?

Yeah, I similarly share a lot of frustration with the vaccine rollout and the one thing that frustrates me, the one thing that is the most pertinent for me at the moment is the fact that people with a disability or health conditions that make them at higher risk of having a really severe, experience with COVID or dying of COVID have been not prioritized earlier. The data that I’ve seen suggests that people who do have underlying health conditions that puts you at higher risk, such as, auto immune disease or some types of disabilities. Those folks are dying at equally high rates as people who are 70 and older, if not higher. So, it baffles me why this hasn’t been, an earlier priority for the States. I don’t have any other way of understanding it except to think of the state’s logic. And I know California, this is, and when I say the state, I’m talking about California, because that’s where I’m most familiar with the vaccine rollout.

But essentially it says to me that the state’s logic is well, people who are disabled or ill, it just makes sense for them to have to stay at home. It just makes sense for them to be de prioritized, compared to other groups of people. And, I think there’s a really troubling logic about that. So, I’ve spent many hours very pissed about the vaccine rollout. As many people are…

As many people are. I, I, I think this whole thing goes back again to the ablest messaging. Let’s just keep disabled people inside. What, if you’re vulnerable, just don’t go out. And the other community, the larger community is somehow okay with that. Like that makes sense to them. Okay, you continue to stay in your home because we don’t want to prioritize you for this vaccine. And initially, when it was supposed to be rolled out in California, it should have been 75 plus people with underlying health conditions. And that was changed in California. In addition to that, not only that deep prioritization of disabled people, but also back to what you said about death rates being at the same level of 75. Plus that also goes back to the provider patient relationship because providers are the ones making the decisions in devaluing lives, human, disabled, human lives, and not giving them the care that they need because they see their quality of life as much lower than we would say our quality of life is.

Yeah. And there’s probably some providers who are doing a really excellent job to advocate for their patients. The problem for me is that they have so much power to make that determination when the entire field of medicine, okay. That is way overgeneralizing, but parts of the field of medicine, as we know it in the U S are driven by the logic that disability should not exist and the best way to, have a high value of life is to not have a disability. So, when that, that is the ethos that you’re indoctrinated in. You get to make, you have the power to make decisions about people with disabilities. That’s really troubling, and that’s not even touching this. This is not even touching all of this racial inequities with the vaccine rollout, which, are deeply troubling…

Deeply troubling.

Right? Black and Brown people are dying at such high rates and people who don’t have access to, people who don’t know how to fight with their providers, or they live in a system in which even if they are really good advocates, they are, their voices are seen as less valuable like that. That is just building…that’s just…

That’s just wrong.

Yeah, that’s just reinvigorating the inequities.

And I think what you said, it goes back to power. There are so many layers when we look at the relationship between a patient and a provider. Academic-wise, providers, medical providers, aren’t taught that social empathetic, caring side. It’s more curing. It’s more of the body as a specimen. How do I take care of that? Which we need obviously. We rely very much on our providers. We also have a fear of our providers because we are fearful that we won’t get what we need from them. I think that historically we’ve seen, and I can’t make that blanket statement either, but we have seen that providers don’t always provide the type of care that a patient needs. Some can argue that could be because of electronic health records, not able to spend enough time face-to-face with the patient, demands on time and productivity for the providers. But I think there’s a power differential.

And I believe it’s time for us to stop looking at our medical providers as this almost God-like person that’s on this pedestal and looking at them as a partner and also looking at them as I’m a customer and consumer, and I’m getting a service from this provider. If I were going to, let’s say, red Robin to get a hamburger and I didn’t get the best hamburger. Yeah. I’m probably going to send it back. But, with a provider, we have a tendency to not push back or not to challenge what they’re saying, because we have fear because they hold power over our care, therefore our lives and our livelihoods and our quality of life. And so, how do we, it’s interesting, how do we change that dynamic? Is it education? How do we get people to a point where they can advocate for themselves through that fear? Does that make sense?

Yeah, I, I think the answer is that, and I, I, I think I have a different orientation to the value of thinking about patients as clients. I think there’s a lot of things that are loaded in that for me, because the answer to getting better care than, is teaching people who are patients, how to advocate for themselves rather than changing the system. So that advocacy does not become the thing that determines your best care. And I don’t think that it’s up to the patients to have to figure out how to do that, I mean, that’s certainly how things get done in the system now. But, I think that, in my incredibly general opinion, right, I think that the field of medicine needs to have deep structural changes. I think that think about this, I’m thinking in particular about people with disabilities, so that disability is seen as a valuable characteristic of a person’s life that does not necessarily need to be cured is one part of a human being, that is something that’s sort of continually managed in the healthiest way possible.

That is my anthropological take, not my policy take.

Man. That is a tall order. And, I definitely agree with you. I think that in the realm of what can we do, like what’s the lowest hanging fruit, right? If we can’t change the entire system right now, like what’s the lowest hanging fruit. I think that’s training for providers on how to interact better or time management or communication skills. One of the issues that I’m thinking about in particular, and this is something that I had shared with you previously, was I went into, I have a new neurologist and I don’t think that people who have their health, they have good health and don’t rely on doctors all the time may not necessarily understand how scary it is to change providers like to change from one neurologist to another, or to change from one primary care doctor to another, because you have so many multiple layers of your health issues…that that’s scary.

Recently I was sharing with you that I went to my neurologist and she’s new, and I was unaware of the time allotment for the appointment. I had no idea that I had a specific agenda for her to cover, but I knew what I was told to bring with me to my follow-up appointment. So, there was a miscommunication on the front end. I went in with notes of what I needed to talk about. I wanted to talk about my migraine medications. I wanted to look at my MRI results. I needed to look at, get fatigue medications. And all of a sudden I was put in the situation where my doctor, my neurologist was rushing me because on her end she’s, she has a time crunch. She has 10 to 20 minutes to get through this conversation. I was thinking that I had much longer. And now she has a patient who has a whole notebook of things that she needs signed.

She needs new prescriptions, all of this, but that’s not my fault. Right? And so, I got some news during the appointment. It was the first time I’d actually ever seen my MRI results in 10 years of having Ms, which is for most people with MS is almost unheard of. So, I saw my MRI results and I saw that I had a lot of atrophy around the outside of my brain and she said it was alarming. Basically went on to say that we didn’t have enough time to go through all of it. It would have to be, it would wait for the follow-up appointment for me,

Oh yeah, that’s great.

I’m thinking, okay, well, Alzheimer’s runs in my family, Lewy body dementia, regular dementia. Is my atrophy associated with my Ms. It associated with, all these other genetic issues that I may have, or be, predisposed to. I left in tears and this is me 10 years into a diagnosis.

I am white, privileged, educated, English is my first language. I understand the system because I worked in healthcare as a hospital administrator. I could go on and on. And yet I leave in tears from my appointment because I don’t feel seen or heard. I ended up, during my February appointment confronting her, but not in a negative way, just saying, I really need to address this. At first she bristled but then once we started having the conversation, she said, I’m sorry. How could I have said that better? And so we talked about that, ended up laughing through the rest of the appointment was a great appointment. I told her, I appreciate you listening to me, thank you. But, I don’t know if that’s really normal where a patient would actually have that conversation when they’re not getting the care that they need,

Or that a provider would be receptive to that conversation as well. Right? And I, and I think the reason that was so successful, it goes back to what we’re talking about earlier about the power dynamics within the patient provider relationship, right? As a linguistic anthropologist, you can see it in the language that, providers use with their patients. So use of highly medicalized terminology, right. Carries with it, this sort of authority. There’s that the interactions that patients have with providers is just laden with this medical authority that providers bring. Even if they’re trying to be approachable, like even if the provider as an individual, is not like this is just how the system structures, these interactions.

That’s a very good point. Yep.

When you talk about, the way you were able to engage with her and it felt more human, like what I hear in the dynamics of that is that momentarily, the dynamics shifted so that it felt more egalitarian. Like, you conversations in which you’re able to laugh with somebody, this is some like egalitarian relationship that you might have. And, I think moments in which…

What does egalitarian mean?

Equal everybody’s equal. Everybody’s on the same footing. Yeah. Sorry, I got to too anthropological.

I was like, man, do I thought about it for a minute? And I’m like, do I know what that means? Okay. I’m just going to double-check.

Okay, great. Awesome. Thanks for double checking. Yeah. I, I was just going to that. I think those moments are incredibly powerful to have those moments with providers in which that hierarchy feels like it dissolves because that is what enables a patient to feel like they are being seen as a whole person. Right? Like you understand me, we’re coming from the same perspective here. Both of us are coming from the same perspective. You’re you’ve dropped this medical hierarchy that is laden and all the interactions we have, and we can understand each other from the same perspective.

Yeah. I really liked that. It was very uncomfortable for me, but it felt like the only thing that I could do, because I didn’t really want to have to go find another doctor either. When we also, when we think about the provider patient relationship, the control that they have over our medical records, that is one thing that I find very concerning and alarming that patients don’t actually know. We don’t know really what’s in our medical records. We don’t know what they’re writing. We don’t know if they’re putting the right information in, if they’re putting down everything that we share with them, the same neurologist I had been talking about, being able to hear my internal organs for years. I mean, almost 10 years and nothing in my notes about that. I find that to be just incredible because I had no idea, like, have you ever even seen your medical records?

I have seen my medical records, but that was, but I’ve seen some medical records and it took me 10 years to realize that it might actually be really interesting for me to go through the medical records of my, the accident that caused my amputation. It took me a long time to even think about that.

Oh, I bet that was really interesting and possibly traumatic.

Oh, it was absolutely traumatic. It was, it was pretty intense. This is a little bit of a tangent, but I was trying to figure out if I still had an appendix, I was like, I had this huge abdominal surgery. I couldn’t remember if anybody told me that my appendix had been taken out the people who were there with me during, like, who were interacting with my doctors when I was in a medically induced coma were telling me, yeah, I think your appendix was taken out. Another one would say, no, I don’t. I don’t remember that happening. And,

Oh my gosh.

And I lost track of stuff. I also knew I had this reaction to some really weird, like very rarely used antibiotic. I would, and I thought I remembered the name and I would, whenever I met with a new doctor, I would tell the new doctor, I have this reaction to this antibiotic and if they couldn’t find it in their systems.

What I had imagined is that there was somebody that I could ask about these records. Like I was like, surely the medical system, like somebody knows these things. There has to be some doctor that knows this about me. It took me a while to realize that actually nobody was going to do that for me. I had to be the one to like comb through my medical records and figure out what it was that I was reacting to. What, and the process of all of the procedures and surgeries I’d had. That was a big shift in my understanding is that these medical records are kept by providers. You, you learn how to do medical records. You learn the things that need to go into them. Those records are not something that any patient, any standard patient thinks I need to have access to those. I need to understand what’s in them.

That goes back to the power dynamic. That really leaves the power with those providers and with the system overall, really, I think about like, where are, where the hell are all my medical records seriously. Like that’s the shit that keeps me up at like I would really love to figure out where are all my medical records and can I put them all together so I can see a whole view of my health because I also think the important thing is that if my disease progresses to a certain point and I need to go on SSDI, then I would need those medical records to be correct. That’s a lot of times why people don’t get don’t when disability claims with the federal government is because of their medical records, yet none of us see them or have access to them unless we fight to get that access.

Yeah. And, and absolutely it’s those medical records are part of what, maintains the power of medicine, right? The medical field is, incredibly like it’s incredibly well-funded and it has a lot of control over what people can and can’t do it, especially when you come up with another, institution and all of a sudden you have to prove something, right? You have to lean on the authority of the medical system to prove that, for instance, if you have an invisible disability and you are trying to, get whatever accommodation it is that you need or whatever, like you have to lean on that power.

Molly that goes right back to what I’m experiencing right now. I’m in the middle of a lawsuit. It’s regarding the toxic mold that I lived in for two years. It was 2015 when I moved out of the toxic mold. And, I haven’t seen any of these medical records. There have been more lawyers that I’ve seen my medical records than I have. So we are, you’re exactly right. We rely this medical system. What, how did you say it?

The medical system is incredibly powerful in our society. Right? And, we have to lean on that sometimes when other organizations or other powerful institutions have questions about our health, for which whatever problem they need to solve as relevant, like getting, compensation from insurance or, proving that you’re disabled enough to get a disabled parking placard, right.

Or a vaccine. (laughing)

Or a vaccine. Yeah. Yeah.

There’s really nothing to lean on because there’s nothing there for us.

Yeah, absolutely. I think if there is any discrepancy in that, it is the people who end up suffering, who get caught in this what feels almost like this fight between really powerful institutions, like, the medical institution and other institutions that are full of money. Like insurance companies.

Like State Farm. (laughing)

They have Jake from state farm and they have Drake from state farm. I love the commercial and I get so angry because I love the commercial yet. I have to be like, fuck you state farm. But anyway, go on.

What I was just going to say is it’s the person in the middle who is, it’s the individual, that person who is suffering, who feels it, who gets caught in the system, that’s much bigger than one individual.

I find this work to be exhausting. Like I think Charis Hill, when they were on the podcast, said it correctly, like screaming into a avoid just to get someone to listen to you. But no one is.

It is an absolutely exhausting experience. And there have been times when I’ve had to fight in order to advocate for the things that I needed and from medicine. Right. I have, because of my amputation, I’ve got this really interesting seating system. I don’t have, I only have one butt cheek. Okay?

Okay people? Get over it. (laughing)

(laughing) Yeah. Yeah. And when I sit, I’m off-balance. Right? So, I have to make sure I have something to level myself out. And it’s very complex thing to have to deal with. I have an idea of what I need and what I would like and what works best for my body. There are times that providers aren’t on board with that, or there are times that they just don’t get it and they mess it up. And, and I, and this is continual pushback that I have to get what I know that I need in a seating system and a chair.

And I get exhausted by the fight, but I am able to sustain that fight because of my privilege. Right. Like I have enough money that I can take a day off work and go, I’ve just got to call the insurance company and call my seating company and figure this out. And, I …

And you have the privilege to know how to do that.

Right? Yeah. Like I, I had a privilege to have really good physical therapist who also understood what I needed kind of also help advocate for me. Right. So that is a point in which like privilege will absolutely propel people into this fight that nobody should have to do in the first place. If you don’t have time to call the insurance company, if you’re too tired, if you are just struggling to feed yourself and feed your children who has energy to do that?

I mean, really people don’t, I don’t think that people understand how tiresome it is and just, Oh gosh, I don’t even know another word. I mean, we keep saying exhausting, but it’s more than that. When you spend so much time on the phone fighting for insurance.

You know, I, I want to read this quote, because I was reading this article today and the title is, do patients expect too much of physicians? and I, so I wonder, like at first I was like, wait, that’s not possible. Well, they are human beings too, working within like a very flawed system. So, this quote says the truth of the matter is that a large degree of America’s love, hate relationship with doctors is fueled primarily by our idealized notion of what a doctor should be when asked to describe their vision of an ideal doctor. Patients often use words such as empathetic wise, confident, attentive, brilliant, dedicated, and altruistic, but they want trust, friendliness, respect, honesty, timeliness, and sincerity too. That’s an awfully high pedestal. These expectations extend to physician’s lives and behavior outside the office as well.

I mean, yeah, I have my thoughts on that. What are your thoughts?

I can see, I can see how people have really high expectations from providers, but I feel like that’s missing the entire point of the problem in doctor patient relationships to me because, I think what I was trying to get at earlier when I was talking about structure and saying that it’s not the individual is like, the medical system just has this inherent authority and providers that are just individuals that are embedded within that system. To me, the problem is not the patients have another reasonable expectations of providers and providers are giving patients what they need.

Like they’re, these are just two individuals interacting with each other in a system that’s already inequitable from the start. Trying to understand which of the individuals that is wrong is just a complete miss. In my, in my understanding, in my view of high look at the medical system. That’s also why I think, provider education would be low-hanging fruit. It would be something but provider education does it doesn’t change a structure.

I was reading a study this morning in the Harvard Gazette, and it says that only 40.7% that’s four, 0.7% of physicians who were surveyed, obviously feel very confident about their ability to provide the same quality of care to patients with disabilities as their other patients received. This is a huge number, just 56.5 56.5% strongly agreed that they welcomed patients with disabilities into their practices. That’s, that’s an incredible number.

It is considering the number of people that are disabled, which it latest estimates in the U S suggest somewhere between 15 and 20% of the population lives with a disability.

Yet almost 60% of providers. Don’t welcome people with disabilities into their clinic or their practice. What has your experience been in getting care? I mean, just even primary care.

That’s a shit show to find a provider who I feel like doesn’t just want to find like a primary care physician who doesn’t just want to send me out to a specialist, because they’re so uncomfortable that they can’t, they don’t think that their deep understanding of medicine and health applies in my case. It feels othering, but I have found a really great primary care physician, but it’s hard to find it’s really hard to find. Even if a primary care physician sends me out to a specialist, they probably don’t know what to do with my amputation. That is a super uncommon amputation and a rather involved amputation in the first place.

Yeah, I’ve learned, I think, I, I think I might now come across as a little scary when I’m meeting a new physician. Cause I’m just like, this is what I need. I need a provider who will provide me this kind of medication. I need you to be able to write this exact prescription. Here’s how the prescription works. I think I’m definitely gotten the sense that I was intimidated of a few of my, primary care physicians, which I’ve had many because I’ve moved a lot and that sucks. But…

Well you’re just spreading awareness and education, Molly.

Yeah. Basically it’s a shit show Sarah.

Let me ask you this, is it really that different than them giving treatment to someone who doesn’t have an amputation like you? Is it, I mean, do you feel like you need something different other than the specific medications.

Sometimes it is different, but I feel like that the number one, the first instantaneous reaction is to go, Oh, you’ve got back pain. Okay. All right. We’re going to need to, make sure I’m just gonna need to send you to an ortho because you probably have some involved stuff going on.

It’s all of a sudden, much more complicated than just, Oh, you should maybe go see a chiropractor.

Or, Oh, you have Phantom pain. Just like go see a pain specialist. I don’t want to have to think about your pain or deal with your pain because that is, I don’t get it when really pain is pain and some primary care physicians do understand pain. Maybe I do want to see a specialist, but it just like you, Sarah, I just want to be able to reach that decision with the provider, like have a conversation with them instead of just the immediate reaction of send me out. Oh, I don’t know. I don’t know, Phantom pain. Like I can’t deal with that new thing.

You know, we, you and I talk a lot about shared experiences and that reminds me of like my neurologist, because they’re not MS. Specialists. I find that, and I hadn’t really thought about this till you were just talking. I find that they will almost like qualify that while I’m not an MS specialist. So, you know, I’m just a neurologist. So, that would be something that we would need to get you to an Ms specialist for, it could be something like which fatigue medications do you want to take.

Yeah. And then…

When I already told you which fatigue medications I take. Why don’t you believe me?

Yeah. And then, you have to see a specialist and that takes time and energy and like setting up a whole new relationship, you know?

Six months later when you actually get in to see someone. Yeah. I mean, and I understand that physicians have to work within this really fucked up structure. I get that and I feel bad. I feel badly for them as well. Like I wouldn’t enjoy it. I think it’s very capitalistic it’s based on productivity. I also feel sad for people with any condition or just people in general who don’t get appropriate care. How do we come to some, I don’t know, some relationship, because again, it goes back to relationships in my belief, how do we get to some relationship and understanding that we’re not at a power differential?

You’re not over me. I want to be a part of my care. I also have empathy for you and I feel sad for you, but I still need to get my care. And so I think that’s kind of what happened with my neurologist and me. And I addressed it at the end, I said, thank you for having this conversation with me. I’m sure it was probably kind of uncomfortable, but I said, for me, I need to know that I have that you’re going to support me, that you have my back. It really goes back to those relationships. And how do we just…

Yeah, Sarah, I think that, just picking up off of what you said, and we can, this can be my sort of wrap up of what I want to see change in the system, which I, I hate answering this question about, medicine when there are a lot of people who have a deep understanding of the healthcare system. But, I think being able to have the experience with the provider in which you get some semblance of feeling like they are understanding you as a whole person and believing you that is enabled in providers who I do not think providers are bad people. I don’t think there’s a blanket statement, but I think they are just stuck in the system that forces them to spend little time with patients, forces them to orient, to diagnoses and things that are really important and keeps them from being able to see the whole person.

I think what needs to change is the way that medicine is funded in the U S in particular, and reducing some of that load that keeps providers from having the energy to orient empathetically to patients.

Yes. And that sounds really great on paper. (laughing)

Yeah. (laughing)

No, I love it. I think that’s a great wrap up and what I want to say, for my wrap-up is that I want to really encourage, and I know it’s scary, but I want to encourage people to converse and have conversations through their fear that it is okay for you to question the care that you’re receiving. It is okay for you to want to have a provider in your life that is a partner in your care who communicates with you well. I think when we’re gentle in our conversations that we are two humans in a relationship and communication is such a big thing. I mean, trust me, I’m the first one to go to a patient advocate, don’t get me wrong, but I’m saying, let’s try to have some conversations. Is there anything else you want people to take away Molly, or that you would, how to have a better quality of relationship with their provider?

I just mirror what you said, Sarah. I mean, it’s that, I think that for the patient to have some sense of empathy for the provider could be helpful. It doesn’t mean that you’re going to get better care or that your expectations are unreasonable. That, you should get what you need out of the healthcare system, but also the problems with patient provider relationships and then disability on top of that disability or illness, are deeply structural. And those are not individual problems. And entering that relationship with that understanding might help, enable the dialogue that does lead to much better care.

I love that. Enable the dialogue. Open up that safe space. Thank you so much, Molly for being here. We are having our wrap-up for this season very soon. I actually, I have to go back and listen probably to all of the episodes, but there is some great stuff that we’re going to be talking about in a couple of weeks. And I’m really thrilled. We’ll be having that conversation soon.

Me too. Yeah.

Thank you for having this conversation with me today. I really was, I woke up today, like I said, agitated about vaccines and this was very cathartic. So thank you for being here.

Yeah. Thanks for having me.

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at [email protected] with podcast episode ideas, as well as comments and questions.

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

Wednesday, March 10, 2021

Stephanie Keeney-Parks joins us this week to discuss all things Autism. As a scholar, academic, and researcher, and mother of a son diagnosed with Autism, she shares her unique perspective and insights with listeners. We talk about the multiple layers of oppression that children of color face in this country, and what it means to have joy despite all of those barriers. Don’t miss this incredible conversation and learning opportunity!

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Stephanie is a doctoral student at the University of California, Los Angeles, in the Department of Anthropology, where she studies medical/psychological and linguistic anthropology. She also holds a master’s degree in medical anthropology from Creighton University, in Omaha, Nebraska.

Stephanie’s research centers on the everyday lives of Black parents who have children with autism. She is also interested in the process of diagnosing a Black child with autism, as well as the healthcare disparities these families face. Stephanie is interested in centering the Black parent’s narrative and experience as the expert to decenter white ideologies on health, healthcare, disability, and Black culture. Her research stems from her experience as a Black woman, wife, and mother of two children. Stephanie’s oldest child is diagnosed with autism.

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with Stephanie Keeney-Park, and we’re talking about uplifting and amplifying the voices of disabled women. Stephanie is a doctoral student at the University of California, Los Angeles, in the Department of Anthropology, where she studies medical/psychological and linguistic anthropology. She also holds a master’s degree in medical anthropology from Creighton University, in Omaha, Nebraska.

Stephanie’s research centers on the everyday lives of Black parents who have children with autism. She is also interested in the process of diagnosing a Black child with autism, as well as the healthcare disparities these families face. Stephanie is interested in centering the Black parent’s narrative and experience as the expert to decenter white ideologies on health, healthcare, disability, and Black culture. Her research stems from her experience as a Black woman, wife, and mother of two children. Stephanie’s oldest child is diagnosed with autism.

Good morning, Stephanie Keeney parks, and welcome to Incluse This! Can you believe that we’re here?

I’m so excited. Thank you for having me.

I’m so excited. I remember the first time we spoke was at the very beginning of my planning period for this podcast, when it hadn’t really been fully created and I still pretty much had no idea what I was doing, but I, I remember that we had a really great conversation that day with you and I and Dr. Molly bloom. And a few things come to mind when I think about that first conversation.

The the main thing that comes to mind for me is this laundry list of systemic barriers facing children of color in this country that I basically read off to you, which was like, yes, obviously Stephanie already knows these things, but I’m very grateful that you were one of my very initial conversations because you were so gracious and you taught me so much and educated me on so much. And, I really appreciated that conversation that we had.

Hey, right on. I’m glad it was helpful.

It was! This list that I read off to you included medical diagnoses delays, lack of access to resources, negative experiences with safety officers in schools, healthcare, financial inequities, systemic racism, inflamed relations with police officers as adults. I mean, the list just goes on and on.

What sticks out for me most is that you said, you know what, Sarah, despite all of that, I really want people to know that we still have joy that despite all those barriers, we still have joy. Hence the name of this podcast episode.

Oh, right on. That’s great. I mean, we live in it all the time. It’s part of the resistance, right?

Yeah, yes. Yes. And that relationship between joy and resistance. I love that. We’re going to talk about that later in the episode, but I think we should start at the very beginning of your experience with your son who is diagnosed with autism. That was something that we started our conversation with.

Yeah, sure. Like most folks don’t really think about disability because we live in such an able-ized and stigmatized society or enabling and stigmatizing society until it’s like near you. Right. My son, having autism clearly changed my world, for the absolute better. Like most people, I struggled getting a diagnosis for him. I knew that he had autism. He was four and not potty trained and not speaking, having some pretty serious tantrums, is inconsolable had some, like really typical what would be autism traits that would be diagnosable. Right.

For us, I remember my husband had deployed to somewhere and it was Christmas. And, I was just in tears because for me when, that when Del would tantrum and I couldn’t console my baby. Right. Like I couldn’t make him okay. I couldn’t make him happy. I didn’t know how to calm him down. That was just awful.

He wasn’t okay. That’s just not sustainable for me or, for most parents, I also couldn’t get our pediatrician to diagnose him and I couldn’t get the school district to diagnose him. The school district actually called me and was like, we can’t get him to get, sit in a chair. We don’t know what to do with this little kid, et cetera. He was in preschool and, had some like global delay and speech delay type diagnoses, but not an autism diagnosis. I just knew that was what I was looking. I went to the base hospital where were stationed and I, and when you go to the hospital, they give you a little sheet of paper and ask you if you will harm yourself or, you need help in an immediate way. And I marked yes. Because I knew they’d take me immediately to a psychologist.

I brought my son with me and I, I walked in to the psychologist. They said, what’s wrong. We got, are you okay? I said, I’m absolutely not okay. Can’t get anybody to pay attention to the fact that my child has autism and I need you to listen to me. That’s kind of how our diagnostic process started. Like a lot of folks, when your kid is diagnosed with autism, they’ll tell you things like, they just tell you so much silliness. I think a lot of parents, because we live in such an ableist world, we don’t quite understand what we’re looking at and it, when it comes to disability and you start from this framework of cure, the kid, cure the kid, you know what I mean?

Like, where are the resources to cure this kid? And, as you kind of move through the process of learning about a diagnosis and thinking about like what it means to take your child to therapy and what are you really trying to do with your child in therapy, and how does this shape your relationship with your child and their relationship with the larger world and those types of things. You just kind of, or think you should maybe have kind of a switch in how you understand your child. For our family, it went from, Oh my God, it’s an autism diagnosis. Like this autism thing to just, this human in front of us is beautifully and perfectly created in the exact way he is. And it’s, you know, he’s wonderful. He’s great. Well, except for he’s turning 16 and he smells bad sometimes.

Autism didn’t make my kid awful. Right. Like, and I think that’s important to like keep in the framework because I think I, people apologize to me when they hear my kid has autism. Right. I actually asked, have you ever met him? If you met my son, you would never apologize for who he is. He’s, he’s great. He’s just a great human, you know,

I love that. We actually have talked about that on the podcast. In another episode, I can’t remember which one about people’s reactions when we talk about diagnoses and that it’s usually, I’m so sad for you.

Yeah.

I was talking about how I just kind of sprinkle it in it’s part of my day to day. I’ll say it and move on, but people are stuck on that diagnosis and feeling sad and can’t kind of move out of that space to join us in the rest of the conversation.

And also like disability is not awful like that does not ruin my life. You know what I mean? Like it just, he’s lovely and wonderful as anybody else here. I mean, like, and it’s a thing, and it’s a particular thing when you’re like couple it with the racialized experience of being black or raising a black child in the United States, raising a black, disabled child in the United States of black male disabled child, right. Like all the intersections start to come into play and that’s, what makes disability difficult in my world is that I’m navigating ableism and racism in like one smush at times, right? Like not just this kid can’t, we can’t get him to sit in a chair it’s that they perceive him as violent and aggressive and scary.

And he’s just a four year old little dude that needs to probably like jump on the trampoline and get some sensory input and then get to sit down, you know?

Yes.

It’s just, it’s really quite complicated. And, and when our doctors couldn’t tell the difference between what was black culture and what was autism, right? So at times they would diagnose, black language use as non-normative and thus autistic.

Really? I didn’t know that.

That was awful. That shows up in my data as a researcher that, because we diagnose and think about what’s the unmarked normative way of being as white. We don’t just say that this is a white way of being, we just say that, Oh, this is the dominant way of being in the world. If you don’t behave like this, then you have autism, right. Which is just this black kid behave in a way that looks normative to whiteness. It’s not normative to blackness, it’s normative to whiteness, right? Like, are you using language in a way that’s normative to what white folks would consider to be the standard. And, and that is a particularly difficult problem to like, kind of, unravel, right? Cause it’s if any cultural deviation from what is the white heteromonic norm then becomes non-normative and thus diagnosable. That’s like the crux of that particular problem in my world, at least.

And, I also remember that just triggered my my memory, when we first spoke, you talked about the length of time that it took for his diagnosis.

Yep. There’s that?

Yeah and I felt like, and please correct me if I’m wrong, but I feel like my understanding walking away from that was that your son was diagnosed early for a black child, but late on a scale of like a white child.

Yes. My son was diagnosed about two months to three months before his fourth birthday. I think white kids get diagnosed around two years of age. So Del was behind. He’s showing things like he was completely non-verbal right. He’s still not potty trained. He’s definitely doing like, he’s definitely stimming. And, having sensory input things go on that probably need to be addressed or supported. And, he just showed so many red flags that were dead ass obvious. And, and it’s strange because we often like, love to talk about how black people refuse to use, like the diagnosis of autism. They refuse like mental health categories and this, that, and the other thing. It’s also true that clinicians refuse to diagnose black kids with autism. They have a real hard time using labels too. We kind of, we have to like, keep that in balance, right.

As hard as it may be for some black folks to say autism, or use that term or buy into, like, what is the DSM-5 category is the same thing that is similar in that clinicians refuse to use that category for black kids to at times. Right? So it’s this whole conflation of race and disability is just really difficult.

Man. There’s so much, that’s so layered within that. What I wanted to ask you about is often times I hear stories about parents whose children are also in school and because their actions are seen as behavior issues as opposed to autism. There’s also research that shows that the officers that are safety officers within those school systems have a negative perception of children of color. So, there are all of these different layers of oppression, right? That children of color are facing.

One of the things that I want touch back upon is what you talked about in the beginning about a cure you want to cure the kid, and it kind of reminds me of saying, we want to eradicate this disease. To me, that feels very much like you want to eradicate the people. What are your thoughts on that?

I absolutely hate the idea of, we must cure your child. I, really bristle when people say things like that, at school at UCLA, which has like one of the, like storied, like, psychology centers for autism, and I’ve, been approached like, well, why aren’t you using more of their services? Like they could do so much more for him. And really, my goal for my son isn’t cure. Right? Like I don’t see anything wrong with him. I do see that, like, he’s going to have to participate in a capitalist economy. So, I’m going to have to make sure that he has a skill set to do that, but that doesn’t mean I have to cure autism or make him less autistic. Right.

Like, and I find, I just find it like deeply frustrating that people can’t just be with him as he is created and not think about like how to fix him. When he’s not looking at you like that. And, asking what’s wrong with. It just doesn’t feel good or right. And, Yeah.

Yeah. I just don’t like it not one single little bit. I’ve actually had students ask me about this, right. Like I gave a talk once, then a student asked if you could cure his autism, to keep him safe, would you do that? And I just thought to myself, like, if cure his autism, keep him safe. Like he’s still black, right? Like he’s still got the other intersection. So, either way it goes, the kid’s not safe and no, I wouldn’t like cure his autism. Like he’s perfectly lovely. I would cure capitalist, heteronormative, patriarchal society. That I’d cure.

When I started working in the intellectual developmental disability community, it was very different for me because I really had been mostly in like physical disability rehab hospital, national wheelchair, basketball association, very much physical disabilities. So, I went into this space of intellectual and developmental disabilities, and I found that I didn’t necessarily know how to interact with that, with that community. I think that, and I shared a story one of our other episodes about my experience. There was a, a mother and, her adult child was a fit in the aisle of Target. As opposed to me saying, Hey, you got this. Or, all moms go through this or whatever, something supportive or even good morning or good afternoon, I immediately went to, Oh, I should give some space. I thought about this on the way home from Target.

I thought, man, did I make her feel worse? Because in my mind I was trying to be respectful and give space. However, in her mind it could have been a shun or, a negative that I didn’t engage. And so, I talked with the CEO of the company, I talked with some of the parents, but I think with this community, that there’s a fear around how do we interact appropriately? What would you say? You know, if I had come to you with that and said, Hey, Stephanie, here’s what, here’s how I reacted. What would you advise? Or what insights would you have?

You know I, I, have run into this quite a bit and I’ve had several different, as a parent whose kid did tantrum in public a lot and being shunned for that, or being told, you’re not a good parent or what’s wrong with your child and this kind of thing. I’ve also been on the other end where I’m at Target, and I see, a parent whose kid is melting down in the middle of the aisle and they look like, they’re really stressed. For me, it’s, it can be a give space. It can also be a, Hey, I’m a quick, I’m an autism parent too. Or I I’m a disabled person. Can I grab your purse and help you in any way? Like, can I, help you get the kid out to the cars? Do you need help or are you all right?

And that’s okay, that’s okay to ask?

Well, the thing is like, we’re humans, right? Like you can run into a human like me, who will say yes, thank you. I appreciate it. Could you hold onto my purse while I hang on to him? So he doesn’t hit his head, right? Like, or you could run into a parent who was like, fuck off, because humans react differently. The other thing that I found may be useful is just like standing, if I feel like the parent is okay, but still like having to attend to the situation, I may stand close and just like marshall off the other watchers of the situation, like people who are like, Oh my God, look at that terrible child and their parent, what’s wrong with these humans? And you can just tell them, you need to take your mess somewhere else. Or just like making sure that security doesn’t come up and do something ridiculous to them.

Oh gosh, that’s such a good point.

Especially if it’s a black family, can you just be there to bear witness? Because when you, as a white woman step in and say, Hey, y’all need to leave this family alone. She’s got this. It’s real different, right? Like you can use your privilege in a way that I don’t have that option.

Yep. Yep.

But also each individual human that you come into contact with is going to have different needs. Right? So, there’s no like right or wrong way to do this and you’re gonna do it right for some and you’re going to just screw it up for others.

You just have to be willing to like, be humble enough to know when somebody tells you, Hey, it didn’t approach me in a way that I felt was respectful. Just say, damn, I’m sorry. And take the loss. Don’t make them feel bad for not wanting your help. Yeah, just take the loss and maybe the next family that will work for it, but this particular one, it just didn’t fit. And that’s okay. There’s like, literally I can’t give you the like one specific way to interact with a family that would work across the board.

Well, and I think that’s the most important point to make is that what I really want our listeners to take away is that it’s the conversations, right? It’s the engaging, it’s the letting the person the disabled person or the family member that’s caring for that person be the lead in the situation. I think what you’re stating about each person is going to react differently to that is the most important takeaway for our listeners. Because one thing that’s happening is that we move away from having a conversation when that fear is wedged between us of how do we speak, what are the right words, et cetera. But, if the person, the disabled person or that person’s family member, that’s caring for them, is there, they lead the way.

Yeah.

We support. They lead the way. I really like how you said, Hey, is there something that I can help you with? What a gentle approach, Hey, you know what? I have a disability too. You can’t even see it. What, I get it, where you’re. Can I help you? Something along those lines of support? I love that. How you said that. Well,

Well, a quiet like allyship if I know that I’m safe maybe I can let you help too, right?

If it’s a safe space, if it’s been, coming from a place of empathy, I think,

Right. Or solidarity, and like, this is somebody who knows what I’m going through. So they’re not judging me. They’re here to help. That’s terribly important. I think a lot of us, when our kids tantrum in public, or, have meltdowns and struggle in public spaces, we feel so judged and so traumatized in the moment. We’re also scared that our kids aren’t okay. That it’s real hard to like, keep all things in perspective in that moment. You know?

Absolutely. I can’t imagine that. I, I really still like how you said it, is there something, make that shared connection that solidarity, lay that groundwork and then a gentle ask. I really liked that it can also.

It could also terribly not work that day also, so …

Well, and that’s going to happen. I mean, there’s some days where I want to talk about, my Ms. There’s some days where I’m like, Oh my God, if I have to explain to anyone else why I look so good today, but I feel like shit, I’m going to lose my gourd.

Yes, yes. Absolutely.

Going back to educating and being comfortable, having those conversations. I remember when were kind of brainstorming a title for this episode, and I said, my experiences as a black mother with autism, I remember you specifically saying to me, Sarah, I need to address that because I’m more than just a black mother. I’m a scholar. I’m getting my PhD at UCLA. I’m a mother. I’m a woman. I’m black, there’s all of these different parts of me. I remember you saying that to me. And I was like, no, shit. It goes back to the shared experience. There is, I can understand that because I don’t want people to see just Sarah disabled or disabled Sarah.

It’s just one of the many pieces that make you up, right?

Yes. And we created that safe space.

Yeah. Yeah.

We had that safe space for you to say to me, Hey Sarah, like, Oh, I didn’t love that.

I have tell people that really very, quite often though, even other like academics who will ask me to come and give an academic talk, but say, can you tell us about what your life is like as a black mom, we could really learn from that. I have to ask them, well, would you ask any other academic to tell you about their personal life? Or would you ask them to tell you about their research, right. Like how, where, we’re in an academic space and still in those spaces, I get read as just mom for them to consume. Rather than like colleague and equitable, that’s kind of where my frustration, where that with that comes from, right. I’ve done all the work they’ve done. You know?

Yeah. I think that there needs to be a recognition of that. And, even Molly and I had a conversation about that before went into the first episode, because she is a doctor, she is an expert in this area. And so, I wanted to be clear that, and I think I prefaced it with, I’ll be calling her Molly because I’m getting still getting used to Dr. Blum, but we also have a friendship, but I wanted people to be well aware that she’s a doctor she’s earned that degree. So, same thing here that you’re earning your doctorate degree, you will be a doctor. And so, there needs to be a certain amount of respect for that work.

Or just space for the fact that I too like Molly, well, I’m not the expert yet, but I’m becoming an expert in this particular field. Right. And, and I’m nearly there. It also is, kind of space dependent, right? Like in an academic department where you go to give a lecture, it’s inappropriate to ask somebody to just tell you their life story so you can consume that and learn from it. Right. But, on a podcast or talking like, as friends and mom, and we’re really actually just talking about my mom experience, and then that’s a different thing. It’s just, it’s also real context specific. I think. So, it’s a hard line to walk that one.

And it’s important for people to understand when we do that, what we’re implying.

Yes, yes. Right? Yeah, absolutely. That’s the whole, there’s a reason I went to go get a PhD and a lot of it surrounds the fact that I could never be taken seriously as a black mom. I was always just a research subject, something that, non-black clinicians in particular could just, dismiss or use as the research topic. Oh, that’s what the black experience is. Like, come and tell us about that so we can learn. And I mean like, okay. Also I’m not like a research lab rat. Neither’s my kid.

Very true.

So it’s complicated. That’s also complicated. It’s never easy. Nothing’s easy.

How do we recognize when we’re asking too much of someone where we should actually be filling in that work ourselves. And I had a guest, he said, if people want to find out information about this, don’t expect us to take our time and our energy to educate you. There is enough data and research and resources available in this year of 2021 that you can readily access.

It’s out there for ya. You know? And that’s true. Yes. Like, for black folks we’re like, it’s been 400 years, we’ve been telling you all the same shit for 400 years. So, at some point we have to stop believing that you don’t know. It’s like a willful refusal to know at this point.

At this point, yes.

There’s some really, like how white people can advocate for black lives matter movement or there’s, some resources about, there’s other white folks who have spent the time to learn about these topics who teach other white folks about them so that black people don’t have to. Inclusion is bullshit. I rock back and forth between it, all the time, right? Like, cause I have a little, I have a son and it’s always in the midst of like the disability conversation.

Do you want inclusive education where he goes to school with neuro-typical kids. Right. He goes to school with neuro-typical kids and supposedly the data’s better than shows that he’ll have better lifetime outcomes. Also he’s demanded to like fully assimilate into white heteronormative ways. And then, you know, also infantilize him. He’s also still at the back of the room with the para, doing different work and the special kid things. It still feels odd and uninclusive, and I struggle with that. Like maybe, why can’t he be with other disabled folks and enjoy himself and people who’s thinking and feel similar to him about the world, why is that a problem? And it, yeah. Inclusion is hard.

That goes back to, a very interesting question that I always have when we look at group settings and how we want individuals within the intellectual and developmental disability community to be integrated into society into the community. No more group home settings. I personally have talked with individuals who feel like, you’re just saying, why wouldn’t it be okay for them to be around people who are, have shared experiences and similar experiences as them. And so, when we tear apart this group home setting, and we put everyone into these homes with someone who’s caring for them, but maybe not a family member, maybe not someone that they know, how is that better than being around a community of people who have your shared experiences?

You and I do the same thing. You go to wheelchair basketball, right. I go to, I have a black graduate study group and writing group that I go to. We do group activities all the time to get access to the comfort that brings.

Yes.

And I don’t think that should be shunned or problematic that my son wants to be with other disabled individuals because they have a shared life experience. I think he should enjoy and partake. I think that the poor lifetime outcomes aren’t because he’s with other disabled people.

Right?

The poor lifetime outcomes are because we treat that group of disabled people like trash.

Exactly.

Yeah. It’s not, it’s not because he’s with other disabled kids. They’re fabulous. Those kids in that classroom are dream. Right. Like they’re great kids.

I also feel like if he wants to go hang out with neuro-typical kids in gen ed classes, do you kit, like have the option and the opportunity to be where you want to be and do the things that make you happy and comfortable.

Yeah. Have the options. That’s interesting because does that go back to the IDEA?

I don’t know. That’s a dumpster fire, so…

Such a dumpster fire!

You know, it’s like the only like true bipartisan effort of the United States government. We refuse to fund this through every administration since its inception. We refuse to like fully fund it continuously and everybody votes in favor of that. What in the hell? What in the actual hell? Not that it’s a good document anyways, but just, I mean…

Yeah. What in the actual hell? It’s not even good as it is, but you haven’t even fully implemented or funded it period. So you can get along when it comes to…

The marginalization of disabled Americans. Yes.

Yes.

The refusal to pay them a full working wage living wage. Yeah.

Yes. That is the tie that binds.

The tie that binds. Yeah. It’s really awful. It’s legitimately awful. It’s legitimately awful. It’s, it’s really shameful. Also they don’t really give a damn, this is another thing where we have what, 50, some years of receipts. It’s more than that. Yeah. This has been a minute.

It has been.

Yeah.

And if you think about it, there has been more attacking of the ADA than there has been of building it out.

Why would they ever build it out? They don’t perceive you as being full citizens because you cannot participate in capitalist societies in ways that make them happy.

But that’s only…well, in ways that make them happy. I was talking with a former colleague of mine the other day and she has had multiple TIA strokes, like the mini strokes. She’s much more susceptible to COVID-19 yet her employer is making her continue to go into the office because they don’t want to give her like every other Friday off. Like, it’s very interesting when you say we don’t work into their program because they can’t, they can’t figure it out.

It’s just that you can’t conform to the very specific norms. Right? Like, or you won’t put your body in jeopardy because you shouldn’t have to, I didn’t realize like how salient this was until I started to notice like everything about my son’s life, right from preschool on is about what are you going to be when you grow up and how do we make you fit that, the white heteronormative middle-class norms, like how do we make your white middle-class member, do you know what I mean? Like, everything’s about that. It’s not about Del’s health care. It’s not about his health and wellbeing. It’s not about his, happiness. It’s not about, it’s always about how do we get him to assimilate into a job.

And even his most recent IEP, that was like the first thing they said, they were like, Oh my God, he has all these, skills that we can put him in a job. Just thinking like, yes, we have to work in this country. That’s what it is. Right. But, also he’s so much more than like worth something because you think you can, the skills are, per job.

Advocates are talking about employment of people with disabilities and the ADA and reasonable accommodations. What we’re not talking about is everything that goes into employment, the person, the transportation, the access to the application, how inclusive is your city? Are there people with disabilities that look like you? Because otherwise, some people don’t want to go work there if they don’t see other people like them represented, I don’t want to teach everybody about disability. I really don’t.

And that’s literally like the space you get put into, right, or, I don’t want Del like sorting silverware, or, when his love is playing the trombone. I just don’t want, like, I want whatever he does with his life to be something that’s salient and important and like makes him happy.

I want to go back to our original conversation opener here, which was about the title for this episode, which is despite the barriers there’s joy. I feel like we’d be extremely remiss if we didn’t talk about black joy and what that means, and you’re going to laugh at me. I actually had no idea what this term meant until I was watching Married at First Sight. One of the husbands had a t-shirt on that said black boy joy. For anyone who knows me, I immediately went and researched that, right. I was like, okay, I gotta find out what this means.

Yeah.

In her article for Vogue titled what black joy means and why it’s more important than ever writer, Shantay Joseph writes, “Joy and resistance are one and the same. To resist the omnipresent, intrusive, and pervasive nature of white supremacy, we must allow ourselves to be rebelliously joyous. Where society has told us to be quiet and that we’re too loud and too different, it is an act of resistance to revel in the joy that they have spent much of history trying to take away from us.” I get chills actually when I read that, it’s powerful. What does black joy mean for you, for your son who’s diagnosed with autism, for your entire family?

During the pandemic. It’s been really hard to find that black joy. When you say white supremacy, you have to like also include the ableism, right? Because Del’s black boy joy looks different than a neurotypical child’s black boy joy, right. For me, like, yes, I agree with what she’s saying, but also like it’s more than white supremacy. And I would argue that white supremacy is predicated on ableism they need it needs it to breathe. Right?

Like that’s part of what creates the fire. But…

That’s so disgusting.

Yeah. That’s historically for me, that’s like historically, a piece of how white supremacy came to be and what maintains it. It’s really useful for them, the ableism shit. So, but again, like for us, it’s like Del playing his trombone. He has a bright green trombone and he walks through the house playing his trombone, or, sometimes he loves buddy the elf and he dresses up in a buddy, the elf costume and just like literally enjoys himself.

Del and I would have the best time because Elf is my favorite movie. When I was actually, when I was writing this little bit of the script for today, I was saying your name. And I was like, Stephanie Keeney-Parks. And, I kept thinking of Elf when he would be like, Francisco, rolls off the tongue anyway, go on.

Look, Del loves himself some Buddy. That’s too funny. He loves waterslides right? Like if you’ve never seen a human love water slides, we had to drive out to Palmdale and drive him past the water slide park that he’s been looking up. Right. Cause he just loves those particular water slides, so we drove him out there. Joy because we’re constantly demanded to talk about trauma. Like I think a lot of society expects black people to pimp their trauma. Tell me about your traumatic black experience. You can get access to send scholarship. Tell me about your traumatic black experience so we can learn from it. Tell me about your traumatic black experience. Oh, that’s not traumatic so now, and now I don’t believe you. So now you don’t get access to the justice in which you deserve. Right. I call it pimping your trauma.

Like we are told to pimp our trauma all the time. I don’t know if that’s my term or somebody else’s. So, it is true and it’s really, it’s an awful space to be in. To be joyful when people want to like frame you as it’s terrifying. Yeah. We face a lot of terrifying shit, but also our people are funny and glorious and beautiful and curly haired and like delicious food cooking and just funny. Many artists, many athletes, so many possibilities, right? Like it’s glorious being black, even with everything we face, we’re so blessed to be black. We feel that we literally feel that way. Like constantly so blessed to be black. We’re fine with us. I think that’s what the joy should tell you is we are just fine with us.

We love us, some of us, but really it’s the other folks that Toni Morrison says it best like white folks got one hell of a problem. That’s the truth because like black folks, we’re going to be joyful no matter how ridiculous y’all get. So that’s really important. Especially to those studying blackness and like health disparities. It doesn’t mean that those things don’t exist. It just means that we thrive in spite of we love and find joy and do things that are salient to us in spite of.

With COVID-19. The data specifically shows that communities of color are being impacted at a much higher level…

You hear a lot with this COVID-19 or folks are on TV, talking about black folks have medical mistrust of the vaccine, which is true. We don’t trust y’all for shit. And we shouldn’t.

Right? I mean, historically, where has that trust been built?

Let’s talk about what work that statement does, right? When you say things like black folks have medical mistrust, therefore they’re not getting vaccinated. But then you show something that says, well, white people are getting vaccine at four times the rate and then white folks go around thinking, well damn it’s because black folks don’t have trust in the medical system instead of, Oh, I wonder, did we give them the same resources we gave white folks? Did we, did white folks infiltrate South central LA, and…

Yeah, they did!

Yeah. Girl. Yes. If you would not send your kid to school in that neighborhood, you aren’t not be getting yourself vaccinated there.

Yes! How disgraceful!

Right. And this is part of the work that particular trope does, right? Like is frame us as incapable and silly and problematic. And we don’t understand medicine and this type of mess, when in actuality, it’s a nice, easy coverup for the fact that you just colonized the black neighborhood again and took the vaccines and black people, couldn’t get damn access and you didn’t give us enough to begin with. Also where is, why is nobody questioning like, Trump’s supporters didn’t wear masks. Do you really think they’re going to put a vaccine in their arm? What about the anti-vaxxer crew that is actually white middle-class college-educated folks. I just, what I mean? Like we have to be real careful when we’re like the black community doesn’t do X. I mean, we might could not…some of us, but sure as shit, the white folks ain’t doing it. So…

So when I read that article, I was like Oh my gosh, you’ve got to be kidding me. I want to learn more because I’m getting inundated with different ideas and thoughts. For me coming on and having these conversations is just that, I’m not saying that these thoughts are, these ideas are set in stone, that this is the way, and this is how we think about it. I’m just introducing voices to get new ideas into the space that starts conversations.

No, that’s real. I think, something good to keep in mind in the same way that like we don’t demand that white people agree on something to make it so for their cultural way of being, I think it’s Angela Davis who said, part of being free for black people is being free to be black in whatever ways are salient, and to understand the world differently from the next black person. Just like, the reminder that like disability in the same way, like all these different, various ways to think about it, just different entrance points and the freedom to like experience it in whatever way is necessary for you, or feels good to you. Or, I try to keep that in mind because working with families, you will find a diversity of opinion about disability.

The point is to bring different thoughts to the table because if disability, all of them together were so powerful in our voice, but when we stay siloed and don’t collaborate, I feel we will not get momentum or get forward progress on the disability rights movement. The other thing is that we’re looking at it from such a white perspective. We need people with different ideas, different voices, and let’s have the conversation.

Yeah, yeah, absolutely.

Do you have any piece of advice, like a change piece? Like what can I do in my life to be more, to understand? I mean, you and I talked about a lot of layers of intersectionality.

One of the most necessary things white folks can do is I identify when they’re marking and unmarking their whiteness, right? Whether it’s good or bad, right. That an autism diagnosis is constructed in a white historical context, right? That these tests are using white norms as the kind of unmarked norm for how disabled children should be diagnosed. If folks could come away with the fact that culture impedes everything and be able to talk about that without it being like offensive, it’s just factual. That would be really useful because a lot of what keeps racism going is like this ability to say, Oh, whiteness doesn’t exist or that’s not a thing, or like biomedicine and science are without race and that’s like not true.

So, marking it and leaving that just as a mark, not like, Oh, this is a bad thing because white folks are doing it. Or, autism is a bad category. Cause it comes from this particular history. That’s not what I’m saying. I’m just saying that’s how it’s constructed. We have to be cognizant of it to be able to make headway for how race and disability kind of function.

I appreciate you so much. Thank you. Thank you. Thanks.

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at [email protected] with podcast episode ideas, as well as comments and questions.

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

Wednesday, February 24, 2021

Our guest this week is disability advocate and postgraduate researcher, Alannah Murray. She brings insights and experiences from Ireland to our conversation about uplifting the voices of disabled women around the world. We explore the relationship between feminism and disability. And discuss reproductive health rights and social inclusion of disabled people, the inclusion of disabled people in LGBTQ+ spaces, and much more!

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Alannah Murray is a disability advocate and postgraduate researcher living in Ireland. Her advocacy mainly focuses on key social issues such as social inclusion of disabled people, reproductive rights and promoting greater inclusion in LGBTQ+ spaces for disabled people. She holds a bachelor’s degree in film and television production and is currently writing a master’s thesis on Disability and Culture in Film. She is the co-founder of Disabled Women Ireland, and in 2019 completed a placement in Washington, DC, as part of the Washington Ireland Program; a program aimed at engaging young leaders across the island of Ireland.

She started her activism journey in her second year of college, while researching her award winning documentary Roll Camera, a documentary exploring representation of disabled people in Irish Film (which you can find here). She has campaigned extensively for equal accessibility to transport, greater funding for students, the need for inclusive education and reproductive healthcare for disabled people. She delivered a TEDx Talk on Disability and Social Inclusion (which you can find here) , and has delivered numerous workshops on Disability & Sexuality, as well as the need for greater accessibility for disabled people in LGBTQ+ spaces.

Sarah Kirwan

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with Alannah Murray and we’re talking about uplifting and amplifying the voices of disabled women.

Alannah Murray is a disability advocate and postgraduate researcher living in Ireland. Her advocacy mainly focuses on key social issues such as social inclusion of disabled people, reproductive rights and promoting greater inclusion in LGBTQ+ spaces for disabled people. She holds a bachelor’s degree in film and television production and she is currently writing a master’s thesis on Disability and Culture in Film. She is the co-founder of Disabled Women of Ireland, and in 2019 completed a placement in Washington, DC, as part of the Washington Ireland Program; a program aimed at engaging young leaders across the island of Ireland.

She started her activism journey in her second year of college, while researching her award winning documentary Roll Camera, a documentary exploring representation of disabled people in Irish Film. She has campaigned extensively for equal accessibility to transport, greater funding for students, the need for inclusive education and reproductive healthcare for disabled people. She also delivered a TEDx Talk on Disability and Social Inclusion and she has delivered numerous workshops on Disability & Sexuality, as well as the need for greater accessibility for disabled people in LGBTQ+ spaces.

Sarah Kirwan

Welcome to Incluse This! Alannah. I’m really, really excited to have you and I’ve really been looking forward to our conversation.

Thanks for having me.

Sarah Kirwan

I love your accent, too. So, if I just stop and listen to that, everyone will know why. ha. I think the first time we talked, I said that too. Oh, it’s so soothing. One of the reasons I’ve really been looking forward to having this conversation with you is because the areas that you work in are areas that I really want to and need to learn more about. So, we have limited time and I just want to dive in because we have a lot to cover.

One of the areas that you focus on is the connection between feminism and disability. And, I want to read a quote from Buzzfeed contributing writer, Lucy Webster in her article titled the Politics of being me. I have a university seminar on gendered security to thank for one of the biggest epiphanies I’ve had about myself or rather about the politics of being me. In the midst of a heated debate about how gender is used to control people’s movements.

Sarah Kirwan

Suddenly it hit me so much of modern feminism relies on the ideal of female bodies that work as expected. For me and lots of other disabled people, that’s a model we simply don’t fit. I’m a lifelong feminist and disability activist yet it took until that very moment for me to see that I am not simply a woman and disabled. I am a disabled woman that well-known feminist rallying call. The personal is political suddenly took on new meaning. I realized that things that had always seemed to mere facts of life like inaccessible shops or restaurants that didn’t provide a disabled toilet are obviously exclusionary. That every time someone is patronizing to me say, or assumes, I am unable to read, they are not just making unfounded assumptions about the clinical nature of my disability. They are also labeling me as different as abnormal. Nothing could be possibly more political than applying these labels, not just to me, but to a whole group of people who are consistently devalued and dehumanized and feminism showed me how I should respond to this by asserting my humanity and being proud of my differences.

Sarah Kirwan

Alannah, can you explain the connection between feminism and disability for us? And talk about your own experiences with both of them and what this writer is referring to?

I’ll do my best. So, basically I suppose from my perspective, I’ve always kind of connected the two because, I can’t be disabled and a woman separately. Like I am a disabled woman and everything, comes back to my disability and my womanhood really like, the idea that, we’ll grow up and get married and have babies, but as a disabled woman I’m told, that I’m not supposed to do any of those things, like I’ll never find someone that, would take me on. If they do, they’re a Saint and heaven forbid, I should have kids, because disabled people are seen as a burden and women are seen as that. They take on the burdens of their husbands and it’s their job to be the person that’s the person that’s there that does all , that does all the cooking, the cleaning, and really carries the house. At least in Ireland anyway, we’re still a very kind of patriarchal country.

I think for me, it was really important as a young woman to really challenge those ideas. Really I got into kind of disabled feminist activism, during Ireland’s fight to repeal our abortion laws. Basically abortion was illegal because the Catholic church still very much has, or had at least control over most of our Ireland or most of its like education and healthcare were very religiously based.

That is so interesting and really leads into my next question for you, which is the work that you do around reproductive rights. This is such a broad term. So, I’ve done a lot of research around that and on what that means as an issue for disabled women. I would just want to read this abstract from an article that, or excuse me, it was a study that’s titled Disabled Women and Reproductive Rights, and it was conducted by Virginia Kallianes and Phyllis Rubenfeld. The abstract states, both the women’s and disability rights movements have paid scant attention to the concerns of disabled women, especially involving sexuality, reproductive freedom and mothering. Although their concerns may seem opposite of the women’s movements, primary agenda, they are based on the same position. Women must not be defined solely by biological characteristics and have the right to make decisions about their bodies and lives.

Disabled feminists often support reproductive rights, but also have different perspectives on abortion and reproductive technologies than non-disabled feminists. The literature indicates that the reproductive rights of disabled women are constrained by the assumption that disabled women are asexual, which you just mentioned, the lack of reproductive healthcare, contraception, and sexuality information, and social resistance to reproduction and mothering among disabled women. Disabled women are at risk for a range of undesirable outcomes, including coercive sterilization, abortion, or loss of child custody. What does this mean for the day to day life of a disabled woman? Can you explain that in plain language? So we can really understand what we’re talking about and why it’s important to educate that we educate on this area of activism.

So, I first started working, in this in this, kind of the, this space where were fighting against… Nobody was allowed abortions. People were getting on a plane and flying to the UK to have their abortions. There was 12 people a day flying to the UK to get an abortion, access and healthcare in a different country. We noticed that nobody was talking about disabled women. Like they were disabled people in general. I don’t like to use the word women in this kind of case because not everyone that needs an abortion as a woman. Nobody was really talking about disabled people in that space. We really wanted to kind of get a handle on that. Our main focus was education, because were saying, look, disabled people, disabled women. These are the issues they’re worried about their child being taken away from them. Ireland had a history of putting disabled people institutions and in those institutions, they would be sterilized.

When you kind of looked at it through a disability lens. At the end of the day, when you don’t take disability into the equation, like people will die. It is incredibly important that people have all day have all the information when it comes to, disability and reproductive healthcare. I think it’s a really important issue.

It was kind of the catalyst, or it was the catalyst that moved you and another group of young women to create disabled women of Ireland.

Yeah, exactly. It was born during that movement of repealing the eighth amendment. We kind of decided look where a group of young ones that, care about disability rights issues through a feminist lens. We didn’t have that in Ireland at all. Most of the voices that we kind heard it was men. I think when Disabled Women Ireland, we had a few people that were like, Oh, why women specifically? And were conscious that we’re for everyone.

Even though we are disabled women, we are inclusive of trans and non-binary people, but we wanted somewhere where we could kind of look at our specific issues and kind of look at reproductive healthcare, look, LGBT issues, even stuff like conservation or ship, like I’m not part of disabled women Ireland anymore. When I was there, it was about feminism and it was about, it was a family. We wanted to create a community on a family where we build each other up and we elevate each other. They’re running a really great campaign. Now at the moment called “Disability Isn’t a Dirty Word.” It’s kind of pushing back against the notion that there’s a whole lot of ways to say disability. People say differently abled, special needs, all those different things when really they can just say disabled, but they’re afraid to say disabled because of the negative connotations associated with the word.

Really what they’re doing at the moment, I think is incredible on, I think, they should be applauded for all the really hard work that they’re doing.

Yeah. I love that campaign disability. Isn’t a dirty word. I, I’m curious to know given how Catholic Ireland is and how much… I love Ireland, by the way. I, my last name is Kirwan. My family is historically from Galway. I visited about, gosh, must’ve been seven years ago and I just fell in love and they had Kirwan Lane. And so that was fun.

Anyway, as it stands in Ireland with the Catholic church, having so much control and reach into the political landscape of the country, what was the reaction, the country’s reaction to this group of women, young women coming forward with disabled women of Ireland and bringing these issues to the forefront.

Disabled women Ireland, I think came after the referendum. People were still very, there were so very raw, there was a lot of, in a way, there was a lot of trauma around activism and people were so exhausted after the repeal referendum and, we’d went through so much, like, it was a lot of abuse kind of online, saying that we never would have been born if it weren’t for the eighth amendment. And, if abortion had been legal, we would have been aborted and all of these things. We had to go through a lot, but people have been overwhelmingly nice when it comes to disabled woman, I’m done, they were overwhelmingly supportive, but we do kind of get the odd one where it’s like, Oh, I don’t see myself as disabled. I meant differently abled and you shouldn’t use those words. So, there’s still a little stigma around disability and disabled women’s issues.

Like I think a lot of people are Oh, why is it just disabled women? And, we had disabled men kind of coming in and saying, Oh, what about men? And I think that’s a very common thing in all the feminist circles. They’ll want to talk about an issue all of a sudden men will come along and think that their opinion is valid when it isn’t. Nobody asked, but I think it was really important that we made a name for ourselves and we kind of, we staked our claim that weren’t going away after abortion rights. There were so many different issues that were disabled issues, and disabled women’s issues. I think it was important…that traditionally able-bodied feminists, we kind of said, look, we’re here as well on you need our help. Not that we need your help. You need ours.

Online, I see a lot of articles about just the divide that the feminist movement hasn’t included women with disabilities. Can you explain that a little bit more? How has that worked historically that disabled women have not been included in women’s rights movements?

Like I think there’s naturally this, idea with feminism that, because one person, is fighting for one issue, nobody else is allowed in and there’s this kind of misconception. And, I think the articles don’t really help that, one group is against another group, like disabled women can’t, support like trans women, like we’re all fighting for this kind of piece of the feminist pie really.

But, in terms of like feminism and disability and kind of what I noticed is that it was little things like having a venue for traditionally kind of able-bodied feminist organizations were having events inaccessible areas in accessible buildings, or they wouldn’t have an interpreter and some would be great and they’d be like, look, we couldn’t get one. We couldn’t get an interpreter in time, or this is the only space we had, which was fine until it became a regular thing. And, it was clear that it, there was hostility nearly. We had some issues or I had some issues I should say, with people that were kind of, they were like, Oh, we have enough to be doing without worrying about access, but I think it has improved, since, they became aware of the issues.

And, they kind of realized that weren’t going to stop irritating them and annoying them until they became inclusive, that it kind of, it got better because at the end of the day, you can get anywhere by just being stubborn. I think you can really make a difference by just refusing to, I suppose, bow to able-bodied people. My life got a whole lot easier once I stopped trying to make people comfortable because I just had no interest in it anymore. You know, it’s my fight too. And, I think that once people kind of realized that I wasn’t going anywhere, they made the access ability needs because it wasn’t worth the headache ha of listening to me if they didn’t.

Laughing. Right? Yeah, I totally understand that. It’s really interesting that you would talk about the accessibility point, because again, I go back to my research because, I just love research and data. I was reading this article titled inclusion of disabled people in the LGBTQ plus community is about more than accessibility. The writer Yolanda Vargas says accessibility at major queer events, like pride is extremely important to disabled LGBT2SQAIP people, and many of us are willing to provide guidance to make it happen. However disabled people can offer more to the queer community than just insight on how to create accessible spaces. Unfortunately, it often seems like the community at large doesn’t want anything else from us, and that we can only exist in queer spaces. If we agree to provide free labor and focus only on addressing questions and concerns about disability from our non-disabled queer and gender queer siblings, this connects to exactly what you were saying.

And, you’re very active in promoting the greater inclusion in LGBTQ plus spaces for disabled people. So, can you tie that back into the feminism and just share with us what your experience has been with this community as well?

Obviously, I am a young, disabled, bisexual woman. The LGBTQ plus community is my community, but particularly in an Ireland where there aren’t a lot of LGBTQ spaces, people will call it, new that it’s a new thing, but, gay people have always existed and by extension disabled gay people have always existed. You just haven’t seen us because we haven’t been able to get into the door. There are currently no fully accessible LGBT spaces in Dublin where I’d kind of do most of socializing. The only, sober LGBTQ space is upstairs it’s up steps. So, it was really important to me, that as a young gay woman, that, I have that community because the LGBTQ plus group as a whole is a community and is a family and, I really, I felt it was important that disabled people should have access to that and they should have access to that community.

So, it was really important that any kind of activism I date, it was really about making sure that you, disabled people weren’t excluded because being young and gay in a traditionally Catholic country, you feel like you’re by yourself. And, you feel like nobody can understand because you have the layer of being gay and then also the added layer of disability. So, I think that for me was kind of the main reason that I, I decided to take up that fight, but, it hasn’t been unreceptive to say like, nothing has changed. But, people have been willing to learn. So I think that’s good.

Yeah. You were just talking about your experience in Ireland, and I know that you participated in the Ireland Washington program. In 2019, you actually worked out here in Congress, right? In DC?

Yeah. The Washington Ireland program, I actually, I worked for a firm, a public affairs company, in DC.

What was, how was your experience different from the experience that you had in Ireland as compared to the experience that you had in DC as a young, disabled gay woman?

It was an absolute world apart. It was so different. Everything like it, wasn’t perfect. Like I could, get the Metro without having to book two days before, and I didn’t have to tell anyone, when I get on the bus or when I get off the bus, like I was just able to hop on the Metro and go on the parts that everything were so accessible on. Everything had a curb drop on my workplace was really great. Like they let me work from home one day a week, so I could rest even going out. Like there were places I could go out and socialize with my friends, whereas we would have had to plan and really researched the place before went in Ireland. We didn’t have to do that in America because it was accessible. Like I marched in pride, in DC. It was my first pride and it was the 50th anniversary Stonewall as well.

All those things kind of come in together. I never had to worry about the route or whether it was accessible because it just was like, they just call it. That was never a question of whether it be accessible or not. Because of course it would be like, why wouldn’t it be? Because they were included like disabled people were included in everything. So it was miles different.

And has that changed your work your activism work in Ireland that experience?

Yeah, big time because I’ve kind of, I’ve seen what’s possible and I’ve seen what you can do if he, if you have a government that will listen, if you have legislation that works and you have community that even if there’s problems that they will pull together, make sure that you’re there because you’re a part of the community and they want you there. Whereas with Ireland, it can kind of be a case, obviously easier to not have you there.

Our legislation doesn’t really work like we have this thing in Ireland where it’s protected structures. It looks at historical buildings and it was made to kind of help secure the history and make sure that we didn’t forget the history, but it also created a world of issues for accessibility. Like you can’t, renovate a protected structure. So, historical buildings and that kind of thing, you can put a ramp in and you can put a lift in and they’re inaccessible.

Disabled people have just have to deal with it. Even, like some of our music venues are in historical buildings and protected structures under just off limits because it was like, well, we’re protected. Therefore we don’t need to do anything about it. Like, I, I understand what it was there for initially. Like, I understand why it was created in the first place, but what was created flawed.

It’s very clear that disabled people weren’t part of the process because I think retrofitting something is more expensive in the long run for, you got your money back in spades by including people.

Well, that’s what I was just going to say. I mean, everyone has the right to be able to access public spaces. And I, I think it will be interesting when people listen to this in the United States, because I think that for a lot of us who are activists and advocates, excuse me, in this space, feel like we haven’t gone far enough here. Right? We have the ADA, but it’s, hasn’t been fully funded. It hasn’t been fully implemented. We haven’t looked at it in years. It needs a refresh. It needs a rebrand, but we have to remember too, that we are at a different point than where other countries are at. And so, it’s good for us to know how we can support uplift each other’s work, because if we’re all together in this and we have a larger voice, we can make a larger impact and we can make a stronger movement worldwide, globally, as opposed to just in each country, if we can uplift each other’s work, I believe.

Exactly like at the end, like, look at us like this is a conversation between Ireland and the U S. Just two people having a conversation, it’s making a difference, no matter how small. I think when people talk about change-making, they think too big, they think that they have to make a massive impact to, make a difference. Every single person, every single movement starts with one person. Like all it takes is one person, doing tiny things. That person can talk to another person and then they can talk to another person. If everyone kind of, done tiny things, they turn into big things.

Exactly. I literally think I just said that on another episode, I can’t remember anymore. Sometimes they run together, but I was saying that sometimes we stare so longingly at this like huge impact or this big change we want to make that we forget to focus on the smaller individual one-on-one personal connections that we make that then, like you said, go from one person to another person and that spreads. I think that what has really been interesting for me throughout this process of this podcast is that I’ve been able to learn so much more about disability in other countries, Poland. They were, it was in the news that Poland banned all abortions. I immediately went back to our conversation around reproductive rights, and my mind immediately went to, the disabled population in Poland and how that was going to affect them. It starts to change our thinking.

We start to understand and look at disability on a more global level, as opposed to just within our own communities, which I think is very cool when we start to have that shift in mindset.

Yeah, absolutely. It’s really about international solidarity and, it’s kind of figuring out what I can do in Ireland to kind of help, someone in Poland, like people feminism, would kind of look at it and be like, Oh, I hadn’t considered disabled people, because they haven’t had to consider disabled people to the more were kind of present in these conversations. The more people are kind of becoming aware, kind of realizing that, everything is a disabled rights issue. Like whether it be housing, whether it be transport, whether it be reproductive health, like everything that people fight for affects disabled people. So, really disabled people should be involved in any and every conversation when it comes to making, because it will affect them. Whether you think that a will or not.

I love how you stated that. I didn’t even really. Yes, I think about that, but not in those specific words, but yeah, everything affects disability, all of the policies.

Yeah. Like everything is a disabled rights issue. Like people, when I’m talking about equal access to nightclubs and people say or like sexual health people say, well, how does that disabled rights issue? I can link it back to every time I can link it back to disabled, to disability and disabled issues. People are so surprised, but, disabled people exist in society and they live, they work, they travel, they have sex, they date, they dance, it’s all like disability is everywhere.

We’re people. Who want access to things.

Exactly. And I think people forget that.

Yeah, they do. I think they do. Oh, I want to go back to one thing that you said earlier, not everyone who needs an abortion is a woman. I want you to explain to our listeners what you mean by that, because I think that’s a really important point for us to make.

When we’re talking about reproductive healthcare, there’s always a, an instinct in us to kind of say women, it’s only disabled women can get pregnant. That really jeopardizes trans people, that can get pregnant or non-binary people that can get pregnant, that don’t identify as she, her, there could be someone who identifies as a he him, they can still get pregnant. Like they, them, they can get pregnant, it’s not a singular women’s issue. Like it is a people’s issue and it’s a healthcare issue at large.

I appreciate you explaining that because I think it’s really important for all of us to understand that it is a people’s issue. It is a human issue, as you were talking about, uplifting and supporting the work globally, internationally, how can we like me and our listeners? How can we support and uplift the work you’re doing? And then on a greater level, how can we support and uplift the work that disability advocates and activists are doing internationally to build that community, that international disability community.

Social media is really invaluable towards this like, disabled women, Ireland and everything they were born on social media, all kind of the work that they do is social media. In terms of kind of uplift and people at large, I’d say, make space for marginalized people. So, people think that, disability, it’s very white when it comes to, disability and activism. People have a habit to prioritize that the people that look like them on, I would say completely disregard that, uplift disabled people of color, uplift disabled trans people and really just give your platform to them if you can, because at the end of the day, I can talk about myself, but I can’t begin to understand the barriers that exist for disabled people of color.

I’ll never understand that, the difference in experience and it’s not my place to speak over them on their experience. I think really just diversifying, I think is the thing that you need to focus on, like to disabled rights, need to diversify because if we don’t, then we’re going to miss a perspective on, it could be a very valuable perspective. So, I think that’s something that’s very important. I think that’ something that’s very important.

Yeah. I have to tell you, I you’re, you speak with such eloquence and strengthen your voice with all of this work that you’re doing. It just is like, this is a human rights issue and your messaging is so spot on with that. I just really appreciate everything that you have had to say. What’s the most important thing for our listeners to take away from today’s conversation.

It’s that everything is a disabled rights issue, whether you think it is, or it isn’t, like transports sexuality, reproductive health, housing, everything comes back to disabled people. Whether, you’re organizing an event or a workshop or a seminar or anything that it’s important to include disabled voices, but pay them as well. Disabled people shouldn’t have to work for free, particularly when so many of them are living below the poverty line and many.

And many of them are in forced poverty.

Exactly. I think the really important thing is to consult the table people, but respect them enough to pay them for their time and their energy, because they are invaluable sources of information.

It’s so Interesting that you say that because I remember when I first started this podcast and one of the potential guests that I was reaching out to asked me if I had a sponsor and I said, no, I’m just, I said, it’s a labor of love. I was laughing, but she didn’t think it was as funny. She said, I’m so tired of hearing people with disabilities. Describe their projects as labors of love. There, there comes a point where the projects that disabled people are working on need to be uplifted financially as well to have that lived experience. Also that professional background, that education does need to come with some payment. I do think, but in this space, a lot of people with disabilities are paid below minimum wage, which is legal here. I don’t know about an Ireland, or not paid at all.

Yeah. Like obviously it’s very hard. In the first place for disabled people to get jobs, the disabled employment rate is 4% here. Yeah. Our government was like, Oh, let’s, do a really good, let’s be really ambitious on in the program for government that was formed. They wanted to aim for a 6% employment.

Wow. Oh, that’s a big jump.

Yeah. They are incredibly ridiculous.

Actually listening to, it must have been a show on NPR the other day. They were talking about how many women have left the workforce just in the last two months. I think it was, I, I’m not going to say the numbers, but really high numbers of how COVID-19 has impacted women. When you think about that from a disability perspective, how many disabled women have been impacted.

Even then you go further and you look at payments, relief packages and our SSI/SSDI programs here aren’t offering any additional support for people. I mean, there’s just more people are going into poverty at this point. That means that more people are going into forced poverty. I think that we, that people forget to look at, they kind of look at the majority as that baseline. They don’t look at the outliers per se, but what they don’t realize is that the disability community is not an outlier.

It’s actually a huge community. If we go back to kind of what you said about people who identify or don’t identify as a disability, that’s also important when we look at who comprises the disability community.

There’s always this conversation around, disability or person with disability. Normally I’m it’s very much like pronouns and it’s very like you’re ground. You’re comfortable enough to kind of self-identify as whatever you want for at the same time. Don’t, don’t tell me how I should be identifying. Like, I, I use disabled, because it’s the label that kind of fits me. And, I’ve had lots of arguments with people are like, Oh, you should call yourself this. I think when we start having those conversations and kind of, really builds a respect between really it’s about respect, but holding each other accountable as well.

Yes. It’s about, for me, I believe it’s about conversations like these so that we can be open and have I, well, I’m going to go back to when you and I had the first discussion, and I think the title for this was Amplifying Voices of Women with Disabilities. After you and I had spoken, you were very clear that we wanted it to be amplifying voices of disabled women to really have that identifier right. Of disabled, a disabled woman. In episode one, we talk about, am I disabled enough? And I’m, I stay? I say, I’m still at that point of I’m a woman with a disability. Last night I was actually talking to my husband and were talking about, when you answer questions on a job application or you answer something about a disability, it depends on if you’re, are you going by the medical? Are you going by identity model? Or are you going by a social model? It depends.

All of those things come into play when you’re answering a question like that. The point I was trying to make is that having an open conversation where you and I can share that and talk about it and be like, Oh yeah, I see why it needs to be amplifying voices of disabled women. And that understanding comes through conversations.

I’m very calm and relaxed when it comes to, am I disabled enough? Like obviously I use a wheelchair, so I’m very invisibly disabled, but I always say to people that if they feel, in any way, it’s like, Oh, I have this issue, but I don’t know if I’m disabled, if comfortable with using the label, then go for it. Like, I, I’ve never kind of been a fan of policing, whether, someone is disabled or isn’t disabled to know, like if they say they are then, they are, and that’s not afraid discussion, like nobody’s identity. I feel she’ll be debated. Like, if you feel like you’re disabled, then you’re disabled and that’s it.

Yes, no one’s identity should be up for discussion. How much better can you say it? That’s what I’m talking about. Alana. Is there anything else you’d like to share with me and with our listeners before we wrap up today’s conversation?

No, just thank you so much for having me. If anyone is kind of interested in me as a person, you can find me on Twitter @AlannahEMurray. That’s kind of where I chat about the kind of activism and, stuff that I’m up to or anything like that. If you want to keep up with me, I’m not very entertaining at the moment. I’m, I’m currently, in rehab after a stroke, but when I do eventually get back out there, I will be doing bits and pieces, so you can follow me there.

Well, you’re almost back out there. I just want to say thank you for being here today for having the conversation with me. I know you’re still in the hospital, so your dedication and commitment. Even when I had to reschedule, I just I’m grateful for your time and your insights. Like I said, just the strength of your voice and your activism. And I appreciate all the work that you’re doing in this space for us.

Thank you very much.

Thank you.

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at [email protected] with podcast episode ideas, as well as comments and questions.

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

Wednesday, February 17, 2021

In this episode, Dr. Marjorie Roberts shares her personal insights and experiences as a COVID-19 Long Hauler. And we discuss why she’s pushing so hard for COVID-19 to be recognized as a disability. With her life turned upside down in a matter of hours, she’s spent the last 12-months advocating for herself and others in the COVID-19 Community. She says, “We’re on a mission to be heard. And COVID-19 is a disability. This is the bottom line.”

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Greetings and thanks for taking the time to find out a bit more about me. 1st and foremost I am a Covid-19 Long-hauler/Survivor/Advocate.

My name is Dr. Marjorie Roberts. My husband and I recently relocated to Johns Creek, Georgia after calling Philadelphia, PA home for over 30 years. I gave birth to my very best friend Leanne who decided to relocate shortly after. I have a Doctorate in Business. Interacting with people throughout the years, I have come to understand something very fundamental, regardless of backgrounds or current situations people are looking to survive and thrive as human beings. With a strong business background in both the retail and restaurant industries, I have always focused upon an individual’s personal growth and happiness.

My skills of providing structured questions to help organize an individual’s thoughts and excellent critical thinking skills for helping others set tangible objectives, have been thrust to the forefront in recent years and led to a career change to my becoming a Certified Life Coach. As a life coach contracting Covid-19 has meant personally I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others as we recover from Covid-19. As an active member of several grassroots group Covid 19 Survivor groups, my approach is life coaching is not a do this and that will happen concept for me; it is a reaching deep, planning and allowing myself and others to come through and out of this experience whole and complete as possible.

Sarah Kirwan:

Hi, and welcome to Incluse This! I’m your host Sarah Kirwan, and this is a movement for disability equity. Today we’re talking with Dr. Marjorie Roberts, and we’re talking about COVID-19 and disability.

Sarah Kirwan:

Greetings. Thanks for taking the time to find out a bit more about me first and foremost, I am a COVID-19 long holler survivor and advocate. My name is Dr. Marjorie Roberts, my husband and I recently relocated to Johns Creek Georgia after calling Philadelphia, Pennsylvania home for over 30 years, I gave birth to my very best friend, Leanne, who decided to relocate shortly after I have a doctorate in business and interacting with people throughout the years. I have come to understand something very fundamental that regardless of backgrounds or current situations, people are looking to survive and thrive as human beings with a strong business background in both the retail and restaurant industries, I have always focused upon an individual’s personal growth and happiness, my skills of providing structured questions to help organize an individual’s thoughts and excellent, critical thinking skills for helping others. Set tangible objectives have been thrust to the forefront in recent years and led to a career change to my becoming a certified life coach.

Sarah Kirwan:

As a life coach contracting COVID-19 has meant personally, I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others. As we recover from COVID-19 as an activist member of several grassroots COVID-19 survivor groups. My approach is that life coaching is not a do this, and that will happen concept. It is a reaching deep planning and allowing myself and others to come through and out of this experience whole and complete as possible. Yeah, let’s just get started. I just want to say Marjorie. Hello and welcome to include this. I’m thrilled. You’re here. I’m really passionate about this conversation that we’re going to have about the relationship between the COVID-19 community and the disability community, and really, how can we embrace one another and support one another? And so I’m really happy that you’re on today because it’s such a curious question for me.

Sarah Kirwan:

I was just doing more research this morning and came across an article that says at this point, the COVID-19 has not been designated as a disability under law. Before we dive into all of that, I just want you to share with us your story.

Dr. Marjorie Roberts

I’m quickly approaching my 11th month of COVID-19. My first symptom was March the 26th. As you can see, March the 26 is just a few weeks away. From the 26 on to this very day, my life has forever changed. I don’t have the stamina that I used to have. I’m not able to do a lot of things that I used to do, and the way that I look at it now, I always say, mentally, I’m in a really good place physically I have to catch up. So my mind is sharp. I’m so thankful that my mind got saved in this thing. COVID-19 is really dark and scary. If you don’t do everything you can to protect your mind, it’ll go. If your mind goes, then everything else is gonna follow. That’s vice versa with the healing process. Now that I got my mind in the right place, I’m just doing everything that my awesome team of doctors are telling me to do.

Dr. Marjorie Roberts

For COVID-19 again I say, it’s definitely not a hoax. It changed my life in one day that morning I woke up on March 26. I was fine. I was functioning fine. I was, I was living my life like it was golden. By the time the sun went down little did I know that almost 11 months later, I would still be dealing with the after effects of the storm of COVID-19.

Sarah Kirwan

Yeah, that’s incredible. What are some of your day to day symptoms? Can you go back to that day? I mean, I feel like it’s been March for a year. To be honest, it’s like March never ended.

Dr. Marjorie Roberts

Yeah. Like Groundhog day. Definitely.

Sarah Kirwan

Yes, but you’ve been doing much more Marjorie since you were first diagnosed with COVID and you had an experience before you were diagnosed. Like, can you share with us that experience with providers that you had?

Dr. Marjorie Roberts

Yeah, that was again, I did not see that coming, but COVID-19 when I first contracted COVID-19 early back in March, it was new. I get to the emergency room, it was like something out of a horror movie. Everybody was PPE’d up, everybody was all messed up and, they had a special section for people like myself with these symptoms that I had been going through, which was diarrhea, really bad nightmares, loss of balance, no appetite, spinning dizziness, nothing down, couldn’t function, and all of that going on at one time, it was a storm growing in my body. I get in the emergency room the first time, tell them everything right away. They’re like, Oh, okay, well, we’re going to do what we do when you come to the emergency, they check you for check your heart, checking lungs and everything like that. And I was just so sick.

Dr. Marjorie Roberts

I was dehydrated. I was dry. I was totally dry. They, they caught that right away and they hooked me up to the app and everything. They were just doing a series of tests so fine. They come in and he’s like, well, you’re going to have to take COVID-19 tests. Now, mind you, this is early April and the only thing I knew about this COVID test is what I saw on television or what I seen on the internet or how it looks like this extra-long Q-tip that they were just sticking up the nose. To make a long story short, I went through that process. They done that. They just did one nostril. Back then, I didn’t know any better. Did the one, the results came back and they told me, Oh, well you have upper respiratory infection. You don’t have, COVID go home drink plenty of water, stay hydrated, take Tylenol if need be. You’ll be just fine.

Dr. Marjorie Roberts

I left the hospital that night, thinking like, okay, this is, I can deal with this. That was not true. From that point on, from April 4th I continued to get even sicker, I just began to just explain that COVID-19 was just revving in my body just totally taking over. I couldn’t walk by myself. I couldn’t, my husband had to help me from point A to point B. I had no energy. I felt like somebody had just took a vacuum cleaner and sucked the life out of me. The diarrhea was going crazy. The hallucinations. The nightmares. It was just a lot going on. So May 28th I get sick. I get real sick. My husband was like you got to get out. They take that to the emergency room for the second time. The second time was worse than the first time, because they were like, look, you were just here, April 4th.

Dr. Marjorie Roberts

We told you nothing’s wrong with you, you need to contact your primary physician. Stay hydrated. We’re not going to test you for COVID now because we told you did have it. And I’m like please help me. Help me. I’m crying, Help me. They give me more fluids. Send me home. Tell me the contract. You know, get my primary physician. Now mind you back then in early COVID the doctors are pretty much shut down. You couldn’t go into the office. It was a wait in line for them to call you back. I finally got who I thought was going to be my saving grace. I got in touch with my primary physician was able to get a phone call with her, started to tell her what was going on with me. I’m thinking, okay, the calvary has arrived because she had been my primary physician for five years. I’m going through and telling her what’s wrong and I’m crying.

Dr. Marjorie Roberts

I’m hysterical. I’m telling her what’s wrong. She comes back on the other end of the phone. She says to me, it sounds like it’s stress. You don’t have COVID because you’re not sick enough. You don’t sound sick enough. You’re not sick enough if you had COVID, you would be in a hospital, hooked up to a ventilator. I’m like, but that’s all that I I’m buttoned up. But, but no, no. I don’t feel good. I can’t sleep. I can’t eat. I can’t breathe. You can hear me panting like a dog. She says to me, well, what’s wrong with you? Marjorie is you’ve been watching too much television. Oh my gosh. Yes. You are mimicking what you see in on television. If you want to feel better, I suggest lifetime movies and work some puzzles. By that point in the conversation, I just leaned over in the chair I was doing because the one person that I thought was going to help me, this woman that had been in my life for five years, that knew me. And the one time that I need her, she totally gaslights me.

Dr. Marjorie Roberts

She was like, well, I can prescribe something to make you feel better. I’m like, I’m telling you, this is not stress. This is not stress. I know what stress feels like. I was a single parent. This is not stress. I went to school for nine straight years. This is not stressed. What’s going on. No help from her, no help. I was like, okay, I don’t know what to do at this point. So I’m talking to my daughter. My daughter is my very best friend in the world. I’m having the conversations with her about my death because that’s how sick I was. And I didn’t know. And this is my only child, my only 40 year old daughter that we best friend. I’m having this conversation with her about how to go on without me,

Sarah Kirwan

It’s different when you’re planning and you’re aging and you understand that’s part of the natural progression of life, but to all of a sudden be having those conversations when those are not expected to happen, is incredible. What you just shared about your provider experience is to me, that is a very similar story that we hear often from people with disabilities. I was on a call this morning, a conference, about disability statistics. They were sharing about how many people feel with disabilities, feel unseen and unheard by their provider. Do you think that you’d be in a different place now today, had your providers actually provided you with the healthcare that you needed?

Dr. Marjorie Roberts

Yes. Most definitely. There were nodules at that time that I had all that going on with my first position, there were things going on top of my lungs that I had no idea about. There were nodules growing and forming in my lungs from the COVID-19. There was spots on my liver from the COVID-19. I first went to the emergency room or April 4th. It wasn’t until around June 8th that I was able to get that second provider to believe me and help me. It was after that I, when she went through all of those three different visits that I went to the emergency room and did her own set of blood work. She was like, I, I can tell COVID-19 is in your body. COVID-19 has done some damage because my numbers were all over the place from the blood work. Everything was totally out of whack.

Dr. Marjorie Roberts

What she saw from three different times that I had been to the emergency room, but all those other visits that she, I had to see a lung specialist right away, because she knew that something was going on in my body. Once I got to the notes. That’s when she was like, well, those nodules in your lungs. If my primary doctor back in April had not gas lit me and tried her best to get me some help, maybe that would have got caught earlier in June, because the time I got there, the nodules was in. They’re still there. They’re still there. They’re monitoring those nodules. They’re monitoring those spots on my liver. They did do a biopsy to make sure that they are not cancerous, but it’s still there. Knowing that they’re still there, it’s like, why didn’t you believe me back in April when I told you something was wrong with me and being my primary physician, like I said, she knew I wasn’t the person that ran to her for everything.

Dr. Marjorie Roberts

It was my regular physicals, my mammograms, my OB GYN appointments, that thing. The only issue that I had going into COVID was high blood pressure, but that was just one pill that I was taking every day. Nothing else. Now fast forward to now present blood pressure is in such good control by my new doctor. I have a, I, I have a problem with the way that I was treated, but it also made me fight. It made be fight. It made, it made me stronger mentally because I knew what was happening to me was happening to a lot of other people that didn’t have the means, that could not speak for themselves. Also in the middle of it I lost one of my very best friends I ever had in my life to COVID-19. I knew I had to fight. I had to fight for people who have no voice.

Dr. Marjorie Roberts

I have to fight for people who are hooked up to ventilators. I have to fight for people who their bodies would never be the same again. So this is where we are now. And, to see COVID-19 as being a disability is what I’m fighting for the world to see. We can’t go back to the jobs. First of all, it completely strips away your stamina, it takes away your energy level. I can’t even walk less than a block without getting winded. I still, sometimes, I feel myself getting headaches, I get a little nervous. I have to do my little breathing exercise because I don’t know is COVID coming back. I don’t know. I don’t know is COVID gonna rear its ugly head.

Sarah Kirwan

Does anyone know, like, is, are those symptoms going to go away that you have now? Like for my multiple sclerosis, it’s basically the damage that’s done before I started on the medication, right? The disease modifying therapy, the damage that’s done up to that point is already done. Like you can’t go back really and reverse that you’ll have some self-healing, but for the most part, that damage is going to be there. You start from that kind of baseline, I guess, to see if there’s new damage moving forward, then it becomes an issue. Are they looking at, are they looking at that at all?

Dr. Marjorie Roberts

In some cases they are because there are now a lot of long hauler, lot of clinics that are, trying to address this issue. Now, since we have, a new president in place, Kobe has been pushed to the forefront because before COVID was getting, were getting mocked, were getting downplayed with the, we get laughed at which we’re still getting a lot of those things. But now it’s real. It’s real to some people. Well, I’ll put it that way. It’s real to some people because you have everybody across the board has been affected corporate America, restaurant, everybody, all entire workforce has been challenged by COVID-19. Now, we would get pushed to the back of the bus and nobody was listening. Now we get pushed forward. Now the, now they’re beginning to listen because it’s affecting them. It’s affecting their families. It’s affecting members of it’s affecting the white house where before, when it was running rampant through the Rose garden, it was a haha.

Dr. Marjorie Roberts

Now those people are now becoming they’re experiencing what we’re experiencing. COVID-19 is not going away. It doesn’t, it doesn’t just disappear out of your body. It’s still there.

Sarah Kirwan

Yes. I, I have so much to say, as you were talking, there were so many thoughts that flashed into my head from the past year, the different things that have been shared, the misinformation that we’ve had, it’s just been just kind of the perfect storm for all of this. You are fighting for COVID-19 to be seen as a disability, right? To be federally stated that it’s recognized by law, that it is a disability. Let’s go back to the long COVID. I was reading an article that was published by cnn.com titled long COVID still puzzles doctors, but treatment is possible. It also States that the severity of symptoms upon contracting the virus doesn’t denote who will experience long COVID. Some of the symptoms of long COVID are severe fatigue, headaches, and brain fog. You talk about incorporating or having the government recognized COVID-19 as a disability, have you seen any work in that space? Have you seen anyone that’s talking about that from a leadership,

Dr. Marjorie Roberts

From a leadership standpoint, like Mount Sinai in New York was like one of the first hospitals to set up their COVID-19 cleaning. They set the precedents where everybody, if Mount Sinai saw a need to take this thing further, then that’s the red flags for me, that is the red flag for me, because that is a world renowned hospital. Like I said, they were one of the first to say, okay, we got it. We gotta do something about this because we are getting people that are not getting better. They are not getting better. And COVID-19 destroys your organs. It destroys your heart. It destroys distortion, never extrusion lungs. It just shuts everything down. If everything is shutting down, some people are having to go on dialysis because of COVID-19. Some people need liver transplants because of COVID-19. Once you face, you come up with something like that and you’re removed from the workforce.

Dr. Marjorie Roberts

Somebody is going to have to help us. So we are being heard. We just got to continue to scream out. That’s why I encourage everybody that I talk to with COVID-19. I tell them to not suffer in silence, speak up, join these groups, get out there, be heard your story. Don’t treat. COVID-19 like a dirty little family secret.

Sarah Kirwan

I’m so excited you just said that. That’s my favorite line from one, we talked the first time and I feel like for people with disabilities, invisible or non-apparent, it is a dirty little secret, oftentimes that you don’t share with people because you have that choice to either identify or not identify with the disability community, right in your group COVID survivors for change. That’s actually how I, we got connected when I’m so thankful for Chris, he has been, and I’ll just say for our listeners, it’s Chris coacher. He is the executive director of COVID survivors for change. What a wonderful man, what a wonderful human being. I reached out to him months ago with this idea, because I started thinking about all of these similarities that there are between COVID long haulers and people like me with neurological diseases and disorders. There’s all these shared experiences, which got me to thinking, well, what’s going to happen.

Sarah Kirwan

When people go back to work, what’s going to happen. When there are reasonable accommodations that will be needed. Are, is this going to be covered under federal law? As part of the ADA, will these people COVID long haulers, will they be able to get reasonable accommodations, things like that. Has he talked to the group or talked with your group about any policies that you’re looking into or the group is looking into regarding COVID-19 as a disability?

Dr. Marjorie Roberts

Chris is on the front line. I mean, he is just, there are no words to describe the level of love that I feel for this man. He cares, he believes us and he is sounding the alarm. He is using every Avenue and every door to get us hurt. He is doing everything. The groups and the way that it’s set up, everything that you eat to function and get through this thing that this group has provided. They, they, we meet every Thursday night. We have a zoom call is open to, they have therapists on every call. There is a minister on every call, everything. They, they go through everything. They try to have training classes to teach you how to talk to media. They have training classes to train you on just the proper way to use Twitter and to use all of those media outlets that you can to be heard.

Sarah Kirwan

That’s fantastic.

Dr. Marjorie Roberts

Yes, he is. He is. And we are let me say like a couple of months ago we had, it’s just so many things that Chris is doing and he is so quiet and so humble. Sometimes he’ll just have pop-ups needed. He’ll just say, you guys feel like talking, just come on and let’s talk about anything and everything. This, there is nothing off limits within this group. Everything, every their resources, they have resources and there are people to help you in whatever you may need help in. When I first saw that group, I was like, Oh, I, I want to be a part of that. I want to be a part of that because all the groups that align myself with their own admission and they are serious about getting heard, they’re serious about getting us help. And it’s just phenomenal.

Dr. Marjorie Roberts

I know everything that this group stands for. Like I say, Chris is just he’s, is truly a gift to us. He is a gift to us because he gets us. He understands us and surrounds us with people like himself to understand us. They don’t judge, they don’t church. That group is growing and we need, and we cry together. We laugh together. We pray together. You can scream. You can shout if you want to come on a zoom call. You’re so tired that you just wouldn’t sit there and sleep, but listen, because you need to compensate because that’s, what’s going on. Not the people at being left alone, people that are being married for 30 and 40 and 50 years, their spouses are dying and they’re left alone. This groups, these groups, they give them hope. We come together and we support one another. And I have made friends.

Dr. Marjorie Roberts

We have formed bonds with people outside of the groups, because everybody, we all know we are on a mission. We’re on a mission to be heard. And we’re going COVID-19 is the discipline. This is the bottom line. Because like I say, when you’re, if you mentally, if you can’t say you can’t work physically, if you’re in pain or you don’t know what’s going to hurt today, you’re, they hurt this hurt. That hurt. You got a headache. Now your heart is a little out of whack. You know, your blood pressure can drop. Everything is changed for you. They’re going to have to make provisions for this new batch of people. That’s coming in a common with a quickness.

Sarah Kirwan

It’s not going away and it’s already come with a quickness, right? I mean, it’s, it has ravaged our country in the world, but I agree with you. I just want to repeat what you said. COVID-19 is a disability. I will be so interested to hear the policy work around that, because that will be about how long does the fatigue last? Is it going to be a short-term disability or long-term disability at this point? It’s hard. How do ? We have no idea? Will it be long-term like something like MS, will it be short term that you have these symptoms? And then, two or three years, they go away or six to nine months, they go away, who knows? So I think there are so many unknown factors, but I, I definitely agree that people who are living with COVID long COVID are disabled. If we look at disability from the general definition of physical or mental impairment that can interfere with your daily activities and recognized by a law.

Sarah Kirwan

Well, this obviously interferes your days have changed. You said you could walk a block and then you’re winded. Tell us about the work that you’re doing to support COVID survivors and long hauler.

Dr. Marjorie Roberts

I have become an advocate. I do not. I speak up, I have started a life coaching business, geared towards people who have had COVID-19 or people who have not had COVID-19 for half of the fear of COVID 19. That is what I, because I know what it does to me. I know what had done to my life. I know that my life is forever changed, and I know that I have, by grace, I have found a way to fight that mentally I’m in a really good place. What I do, put on my cheerleader outfit and I go for it and I cheer people on. I call people, I engage with people. I talk to, people are read people’s posts are read between the lines. If I don’t like what I see, I reach out to that person and we talk about it. When I’m in these groups, I see people that are hurting people that are really hurting.

Dr. Marjorie Roberts

I make sure that I write that name down and I reach out. I try to form a group with them, a group within a group, because COVID-19 is really dark and lonely and it was dark and lonely for me. I was going through the early phases of COVID-19, I was in the house by myself because my husband had to work. Our daughter had to work. I was at home and I had to find a way to function. I had to find a way to bring some sunlight back into my life. I had to find somebody to talk to, I have a therapist. I had that therapist, but I couldn’t cut to talk to her every day. What I did was I started researching. I started looking for people like myself, and I found the groups. I started to find, found a long haul. The Kobe group that was started by Amy Watson, because she was a long hauler.

Dr. Marjorie Roberts

For 300 plus days, she had a fever. Over a hundred is a disability. So, I’m in a lot of groups in some of the groups I’m in, like we just bond. We just stick together. I’m in another group called the coronavirus four room curl. This young lady, she listens to our stories. She writes our stories. She talks to us and writes our stories and put some out for the world to see she puts it out there for the world to see, this is what she does. I’m out there 365 scoping, everything that I can, I’m doing everything I can mentally to support people that have gone through what I have going through. And I can’t save everybody. Every day I set out, I said, if I could save one person today, then I sleep good at night. Yes. COVID-19 like I say, I don’t know how they’re going to do it, or where are they going to do it, but they’re gonna do it.

Dr. Marjorie Roberts

They’re going to have to do it because somebody has to help with it. It’s no way around it. It’s not going away. The numbers of them are going to continue to rise. Now, no, we have the vaccine on the scene, but you still have people who think COVID-19 is a hoax. You still have people who want to do what they want to do. As long as they want to party and do what they want to do, COVID-19 is going to show up and keep affecting people. That means more people are going to be disabled. More people are not going to be able to go back to work. People that own businesses now have been affected. They can’t work. If they can’t open their business, their employees can’t work.

Sarah Kirwan

All of the nonprofits that exist for like cancer, cerebral palsy, spinal cord injury. I mean, multiple sclerosis, all of these different foundations and nonprofits that exist for research and funding and support for individuals who are living with that disease or disability. I wonder if, or I should say when there will be an organization that arises to address this gap in support for this community,

Dr. Marjorie Roberts

They are they’re up and coming for a whole, almost the whole duration of COVID-19. Again, it was being treated like a dirty little family secret by the government. It was, it was a hoax. It’s going to go away, just take a Tylenol and you’ll be all right now, there’s people out there, but until the foot got taken off, so even doctor thought he couldn’t even speak freely.

Sarah Kirwan

I feel, and again, correct me if I’m wrong. The COVID community has been grieving in silence up until the point where President Biden, was it the night before his inauguration where he had the Memorial?

Dr. Marjorie Roberts

Yes, he did. Yes, yes. It brought us all to tears. Very night that very night, Chris called the meeting for all of us to come if we needed to, because he knew that was an emotional day for us. He knew that we needed him. Just like that on clockwork, the email came through. If you guys want to talk, if you come on. We came together and we cry and we celebrate it finally. It was like, Oh my God, thank you. Finally, finally got that. We, yes. That was it. That, that began our night.

Sarah Kirwan

Yes, yes, exactly. Yes. For me sitting there for me not having the experience that you’ve gone through, that all of these members of the COVID-19 community of survivors have gone through, for me, it was this release of emotion that I didn’t almost like I could breathe for the first time and start a grieving process. Like something had been taken off of my back. And I just cried for two days. I mean, it really cried for two days that day, the day before the inauguration and the inauguration, because I felt for the community, the COVID- 19 community, I felt like for the first time now you’re heard now you’re seeing now your voices are going to be uplifted.

Dr. Marjorie Roberts

Thank you. Thank you. Yes. Thank you. Because it is people like yourself, Sarah, that believe us, we don’t take that for granted and we don’t take it lightly because thank you for believing us, because that means the world to us, because it was so many people who did not believe us and gasoline, us and Marcus said were seeking attention and that were lazy and we didn’t want to work. We would just claim and have this thing. When, when people like you support us and believe us, it gives us hope. It pours into us spirits. It gives it, lets us know that, Hey, they’re not lying. They’re, you know, everybody’s not lying. You know, over 400,000 people have died. That’s that’s not a hoax. That’s not, that’s not a hoax. So, again, I, I thank you for your support. I just want to say to everybody, that’s listening, if you or a family member has contacted, COVID-19, if you have any questions or concerns about COVID-19, please reach out.

Dr. Marjorie Roberts

There are groups out there you don’t have to be, had to have COVID to be concerned about. COVID you’re more than welcome to join our groups and, come be educated, come learn, survive. Of course long-haul COVID fighters, the Corona virus for mass with us. That’s a, that’s a movement that’s begun. You don’t have to do anything but post the picture of you wearing a mask, but we are growing in numbers. We are growing, we have members, and it’s just so many. And of course COVID survivors the change. We are going to bring a change to this thing. You can find me on all social media platforms. There’s no question is a stupid question. If I don’t know the answer, then I know to go to people who do, because COVID-19, again, it’s not a hope it’s not going away and I don’t want anybody to suffer in silence.

Dr. Marjorie Roberts

Speak up, be heard, again, reach out. There is, there is hope there at the end of the tunnel, we can see it now. We still have a ways to go, but we are not far away from as were.

Sarah Kirwan

No, we’re not. I always, well, I told you this, when we first got on the phone, you’re like this ray of sunshine, you’re so positive about, the change and empowered and moving forward. I just love that about you because it’s contagious and any way that I can help support this community. I also belong to the Facebook group. COVID survivors for change, just so I can hear the stories. That’s one thing that we talk about in the disability community. We should be leading that way in uplifting these voices and sharing these experiences and these stories. Really what I hope that this episode accomplishes is that people understand and connect the dots between COVID-19 and disability that people will start to understand. Like you said, given the messaging around the pandemic for the last year, there are a lot of people who don’t believe the data don’t believe the science or the scientists.

Sarah Kirwan

We are not those people for the people who do believe the data do believe the scientists they can. They can recognize this as a disability and uplift voices around that. I want to see it embraced the COVID-19 community embraced by the disability community. We have experiences. We have, very similar experiences when you and I spoke. You talked about being winded, just walking around your house or having fatigue that you didn’t want to get out of bed or get off the couch. That’s something that I experienced that my friends with MS and other neurological diseases experience. Instead of seeing where there are those differences, I am truly hopeful that we can see where there are those shared experiences and we can embrace one another and bring our communities together. Right. To understand that. That’s another thing that I’m trying to work on with the podcast. I’m work that I’m doing is to bring a more collaborative spirit into the disability community and understanding that if we align our voices and our messaging and we collaborate with one another, then we will make real change in this country.

Dr. Marjorie Roberts

Yes, most definitely.

Sarah Kirwan

Yeah. If we continue to fight people and fight one another and oppression Olympics of this disability or disease versus that one, we won’t get anywhere. We’ve been told that by lawmakers repeatedly. So that’s my hope. I’m just really thankful that you will a, I’m thankful for just your energy and spirit and coming on here to have the conversation with me, I believe I think that those three words are so important for us to hear. I have an inner ear disease. That’s very rare that went undiagnosed or misdiagnosed for about nine years. When I finally got to a provider that said, she put her hand on my knee and she said, I believe you. It was also at that same time where I just felt this relief of, Oh my gosh, I’m finally believed when you’re not believed. You’re constantly fighting. You’re already in survival mode with your health mentally and physically.

Sarah Kirwan

Now you’ve got to fight for people to even believe what you’re trying to tell them. This was done on such a much larger scale than most of us have experienced.

Dr. Marjorie Roberts

There’s a letter that’s going up. We just signed this letter this week. That’s going up, that’s going up to Joe Biden. We send it up. We’d go off for the top gun. So, yes. When I read the matter, I had such a smile on my face. When I went back to the group to share with the group that I had signed the letter, that’s what I said. I signed that letter with a big smile on my face because it’s going to get in the right hands. Because like I say, Christmas, no joke. He’s not going to just, Atlantic with any nonsense or any foolishness. That letter is going to make it’s going to make it. That’s just the first of many, a note, there are gonna be many more to come because we are going to be heard. And I’m just waiting for that day.

Dr. Marjorie Roberts

I’m just waiting for that day when President Biden’s people says to Chris’ people have your people call my people. Haha.

Sarah Kirwan

I love your excitement. After everything you’ve gone through you are still a ray of sunshine.

Dr. Marjorie Roberts

Because it’s going to work Sarah.

Sarah Kirwan

I thank you for a seeing the connection between disability and COVID-19 and having the strength to speak about it, speak out about it and to share your experience. And it’s not easy. What you’re doing in the work that you’re doing to support the members in this community is just really outstanding. I’m grateful that you took the time today to just have this conversation with me. I’m excited for people to start hearing a different thought process about COVID and a different conversation about COVID. And I’m really excited for that.

Dr. Marjorie Roberts

No, we’re not going to be pushed to the back anymore. We’re not standing for that. You know, we’re going to come together. We’re going to ally a disability is a disability. There’s no one. There’s no two. There’s no three. We are all ones. We are all one.

Sarah Kirwan

We are all one. The best example of that is from Crip camp, which was, decades ago. That collaborative spirit hasn’t gone away, but it’s changing. I feel like we need to change it a little faster.

Dr. Marjorie Roberts

Yeah, that’s right. Yeah.

Sarah Kirwan

Let’s like, let’s step on the gas.

Dr. Marjorie Roberts

They got you and me in the car now. Now we behind the wheel. We’re going to put a foot on the gas and we don’t pick up. Who else going to go and go try back. Who don’t want to go? We going to take this thing all the way to Washington DC.

Sarah Kirwan

Yes. I feel like so excited. I want to go outside and like run in the streets with signs. We’re going to Washington. Yeah. I love it. I love it.

Sarah Kirwan

All right. Well, thank you.

Dr. Marjorie Roberts

Thank you so much.

Sarah Kirwan

Once again, to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by eye level communications, LLC. Eye Level is a California based woman and disability owned small business committed to having critical conversations at eye level that are necessary to move disability to the forefront of the greater diversity. If you’d like to learn more about the work we’re doing, please visit the website at www.eyelevel.works. You can also email me directly with any podcast episode ideas or questions and comments at Sarah at eye-level dot works.

Remember to put your disability lens on when you look at the world and tune in next week for another stimulating conversation on includes this, the podcast, that’s really a movement take care and be well.

Wednesday, February 10, 2021

Throughout the past year, the COVID-19 pandemic has been the impetus for bringing the term ableism to mainstream conversations. In this episode, Charis Hill and I discuss the messaging we’ve been confronted with, the actions we’ve witnessed, and the structures in-place that devalue and destroy disabled human lives.

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Award-winning advocate for the spondyloarthritis community since 2013, Charis is a queer disabled writer, speaker, and model living with Axial Spondyloarthritis, Major Depressive Disorder, Anxiety, Post-Traumatic Stress Disorder, and Autism.

Charis has been instrumental in the creation and design of spondyloarthritis disease treatment guidelines, patient-centered rheumatological research, international criteria for disease treatment outcomes, and research guidelines. They are consistently involved in national/international awareness and legislative advocacy efforts to improve spondylitis education, funding, and access to treatment. Charis serves on the Spondylitis Association of America advocacy committee and the CreakyJoints/Global Healthy Living Foundation (GHLF) Patient Council and COVID-19 Patient Leadership Council. They have spoken at numerous events and press conferences, as well as regularly with members of Congress on Capitol Hill.

Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week and they’re featured on covers of Féroce magazine, Arthritis Today, and Spondylitis Plus Magazine. Their bylines appear in HealthCentral, Healthline, Business Insider, AnkylosingSpondylitis.net, and This AS Life; including cover stories for Arthritis Today and Spondylitis Plus magazine. Charis’ story has been featured numerous times in mainstream news and lifestyle media, including the 2019 documentary, Becoming Incurable.

Sarah Kirwan:

Wednesday, February 3, 2021

GUEST: Tiffany Yu, Founder of DIVERSABILITY

https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E4_What_Disability_Community-Tiffany_Yu.mp3

When we think of disability, we often think of the literal definition, which is a medical issue that keeps a person from fully participating in daily activities. And when we think of disability community, we often think of the total population of all disabled people. However, a medical diagnosis does not automatically make anyone a member of the Disability Community. In today’s episode, we explore this phenomenon.

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to rebrand disability through the power of community; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant for disability projects that has awarded $41.5k to 42 projects in 8 countries; and the host of TIFFANY & YU, the podcast. She was appointed to the San Francisco Mayor’s Disability Council by San Francisco Mayor London Breed in 2019.

Tiffany comes into this work based on her own personal experiences of acquiring a disability at a young age as a result of a car accident. She started her career in investment banking at Goldman Sachs, working on over $14 billion of announced transactions. She has also worked at Bloomberg, Sean Diddy Combs’ REVOLT Media & TV, and a venture-backed real estate startup. She has been featured in Marie Claire, the Guardian, and Forbes and has spoken at the World Economic Forum Annual Meeting in Davos, TEDx, and Stanford University. She received her Bachelor’s degree from Georgetown University and her Master’s degree from the London School of Economics.

LEARN MORE:

https://www.tiffanyyu.com

Hi, and welcome to Incluse This! This I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Tiffany Yu, and we’re talking about the disability community. Tiffany is the CEO and Founder of Diversability, an award-winning social enterprise to rebrand disability through the power of community. She is also the Founder of the Awesome Foundation Disability Chapter, which is a monthly micro-grant for disability projects that has awarded $41,000 to 42 projects, in eight different countries. Tiffany is also the host of Tiffany and Yu, the Podcast. She was appointed to the San Francisco Mayor’s Disability Council, by San Francisco Mayor London Breed, in 2019.

Tiffany comes into this work based on her own personal experiences of acquiring a disability at a young age, as a result of a car accident. She started her career in investment banking at Goldman Sachs, working on over $14 billion dollars of announced transactions. She has also worked at Bloomberg, Sean Diddy Combs Media and TV, and a venture-backed real estate start-up. She has been featured in Marie Claire, The Guardian, and Forbes. And, she has spoken at the Word Economic Forum Annual Meeting in Davos. She has also given talks at TEDx and Stanford University and she received her bachelor’s degree from Georgetown University along with her master’s degree from the London School of Economics.

And with that, let’s dive into What Disability Community?

Welcome to Incluse This!, Tiffany! I’m so excited to finally be here talking with you here today and answering the question that so many have – What Disability Community? So, you and I met by phone last year when I initially started planning this podcast. Since that time, the podcast has obviously undergone many edits, reschedules, and new launches dates, which you have been so flexible and I’m extremely grateful for. Despite those barriers, here we are today.

As you know, I’ve researched, targeted, and hand-selected the guests for this podcast, in order to maintain the intent behind it, which is to provide this coalitional space where meaningful conversations can happen, shared experiences can be highlighted, and change has a chance to happen. I’ve seen the work that you’ve done and the work you continue doing to bring this community together, as well as bringing it disability to the forefront of the greater diversity conversation.

When we think of disability, we often think of the literal definition of disability, right? Physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions, or participate in daily activities and interactions. I don’t think I can even count the number of times I’ve had to fill out paperwork or have a doctor’s note speaking to my ability or lack thereof to fully participate in daily activities. However, does this automatically make me a member or a part of the disability community?

Let’s start to answer that question with a couple of quotes from a great blog post written by Andrew Pulrang titled, What Defines Members of the Disability Community?; this connects us back to the original conversation we had with our guest, Molly Bloom, a couple of weeks about being disabled enough. Pulrang says, “If you have a physical or mental condition that you have to think about and plan around every day, then you are disabled.” He goes on to write, “But, if I have absorbed one thing over the last several years of disability blogging and immersion in online disability culture and activism, it’s that being one of the disabled population isn’t the same thing as being a part of the disabled community.”

So Tiffany, we can use the words disability community to reference the total population of all disabil disabled people excuse me. We can use them to reference common characteristics of disabled people or their medical diagnosis. We can use them to describe a small group of disabled people who have a common viewpoint or opinion about something. What do we actually mean when we use the words disability community? Tiffany, can you please break this down for us.

I loved that entire intro. I mean that was so enlightening for me, so I think what I wanted to start with is the definition of disability, which you highlighted. And for me, the way I I phrase it is a condition of the body and mind that impacts how we go about living our daily life. Because I think that embedded within that definition of limiting, impairment, interfering, right? Those all have a certain type of connotation that many people who are disabled don’t necessarily feel an affinity with that, which is why there was a part of me that really wanted to add the word systemic somewhere in that definition, right? There are so many systemic factors that are limiting us, right, and if we take a look at the Social Model Theory of Disability, which says that disability exists as a result of our physical uh infrastructure and social attitudes towards disability. Like if we look at disability through the definition of the Social Model what we see is there are so many systemic factors that are what are limiting, impairing, and interfering with us being able to live our lives fully.

That was kind of point one. I think point number two is that I loved the way Andrew talked about how the the populating of people who are disabled, and the disability community are different. And I want to reference a piece that Professor Rosemarie Garland Thompson had written for the New York Times and

the piece, I believe, was called Becoming Disabled. And one of the things I talk about in my work is that I believe most disabled people have what I call two disability origin stories. The first is when we either acquire our disabilities or if they’re congenital you know that’s the first disability origin story is is consciousness around the diagnosis. Or or or when we initially have symptoms you know because sometimes even the diagnosis can take can take a long time.

The second is when we uh take ownership over our disability um and our disability story. So, I think that the difference between being part of the disabled population and being part of the disability community is rooted in getting from disability origin story number one to disability origin story number two. And to be honest, many people who have disabilities may never get to disability origin story number two.

That’s one thing that we talk about within the Multiple Sclerosis community because a lot of people who appear to be nondisabled who are living with MS but don’t identify as having a disability or being disabled, which I actually think keeps them from accessing a very amazing community for support and this kind of kinship and understanding that you get with the disability community. The mission of your organization, Diversability, is to rebrand disability through the power of community. So, what definition of disability community do you and your staff members and volunteers use in your work?

That’s a great question. I like to keep the definition of disability broad and I like to leave space for people to self-identify as they see fit. One of the things that I’m learning is that the definition of disability actually changes depending on either who or what and by that I mean individuals or policies or government departments you know define disability. And so, the definition of disability is just so nuanced right? Because what it means to be disabled, to receive social security benefits, might be different or what it means to be covered under the Americans with Disabilities Act. So, I do want to highlight that there is nuance there.

And so, when I created Diversability, for me, it is we have this shared experience of what it feels like to be socially excluded. We have this shared experience of a label disability, which to some of us um or previously historically and systemically has meant something bad. And, when I talk about rebranding disability, it’s not necessarily changing the word disability to something different, but instead thinking when we hear that word disability, can we think of it in a neutral and empowering way, rather than and what I often tell people is, if you take anything away from this presentation, it is how much active un-learning we need to to not associate disability with bad. To not associate with broken. And not associate disability with less than. Which is why I think the definition of the word disability in itself right is limiting in itself.

So, um, that’s part of what we’re trying to do at Diversability, which is there has been research done that shows that your keys to longevity, happiness, your well-being, is rooted in having healthy relationships, in having positive um social connection, and for many of us who are disabled who aren’t able to find community, we get stuck in a cycle of feeling socially isolated and that lends itself to loneliness, which has all of these social health impacts, as well. Diversability. That was a very long-winded answer to say Diversability for us is we give people the space to self-identify as they see fit. But, what I want to acknowledge, as well, is Diversability is a space for people who are disabled and nondisabled. And the reason why I want to mention that is because I find at Diversability we want to meet people where they are.

So, what I mean by that is often times you know if I think about who our ideal community member is this is someone who may have just gotten their diagnosis you know doesn’t really have a community, or maybe have been disabled their whole life but similar to the conversation that you and Molly had, they don’t’ necessarily have consciousness over claiming their disability yet, or they don’t’ think they’re disabled enough.

How can we meet you where you are and as a result of interacting with our community members who are very proud of their disability identify. How can we encourage those who are disabled, but might not claim the identify yet, get to a point of feeling more empowered to talk about their disability or more empowered to claim ownership over it.

So, that to me is where I feel seeing that journey right if I talk about getting from disability origin story number one to two if I think about outside of that tag line that you mentioned, when I think about it at face level, my goal and my dream, is to get as many disabled people as I can from that origin story number one to origin story two so that we can start to redefine what it means to be disabled to our nondisabled counterparts.

I love that. That was fantastic. And I think it’s so important because for someone like me it took me a long time, two diagnoses to get to a point of really owning disability as part of my identity. And this process that I’ve gone through to bring this podcast to life and launch my business. But, owning that piece of your identity is so important and I feel like for me, when I wasn’t owning that, I wasn’t living my true, authentic life, there was this piece of me that was left out of conversations or left out of you know anything that we would talk about. I wouldn’t bring that to the forefront.

So, I love the shift from origin story one to origin story two. And I love how you talk about meeting people where they are because some people may join your group and not have disclosed, yet. And I also think that sometimes, you know, we get so far into our diagnosis and we start to forget some of those feelings that we had at the beginning; those conversations we have around disclosure.

Let’s go back to the diversity within this group. And you’re bringing in disabled and non-disabled into Diversability, which I love. There’s just so much diversity within the disability community and it’s not just the physical, it’s also a social categorization that crosses all others, right? It crosses race, gender, religion, socio-economic status, and sexual orientation, among others. And, during one of my most recent staff training sessions, this staff member asked me, how can we be inclusive of the disability community, if we don’t understand who belongs to the disability community and we don’t know how or who is supposed to be included? What are your thoughts on that, Tiffany?

Mmmmmm…that’s the million dollar question, right? I mean I think that part of so part of why we’re called Diversability is not only number one we take pride in our disability identity, but we want to highlight how diverse the disability community is. Disability doesn’t just look like one thing and similar to you at the staff meeting, one of the things that I Have found is that often times when I share my disability story, so so one of my arms is paralyzed I will often have people come up to me afterward and they’ll say hey, I have ADHD, or I have diagnosed depression, or I have asthma, does that count? And I find that when, even when we’re asking ourselves the question does that count, the answer is probably yes, you know right, because now if you’re being part of this conversation you’re realizing Oh, the fact that I have dietary restrictions due to a health condition I have, uh, again restricts or limits like what I can or can’t eat, um.

I what we’re realizing and what I feel hopeful about is in the context of everything that’s happening around racial equity, there is now a more elevated consciousness around intersectionality right, and you talked exactly about the intersectionality that exists within disability but it’s hard to grapple with okay, you can be black and disabled, you can be a woman and disabled, you can be you can be five-years-old and disabled, or eighty-years-old, you know, you know you can have all of these other intersecting identities and still be disabled. What I find is what makes it difficult is because stigma and ableism is so pervasive in our society, and in our systems right, there are policies that are keeping certain disabled people in perpetual poverty. Because we have all of this just so embedded in our society, what ends up hap happening is that you have people who don’t quote unquote look disabled right because there may not necessarily be a physical manifestation of their disability not wanting to disclose or not seeing enough other people to mirror back to them that it’s okay to talk about your disability and be open about it. And this ends up kind of fueling into all different areas all different areas of our life, from employment to how we decide whether or not we want to get the services we need.

I even think about my own journey of going from story number one to story number two and the first couple of times I shared my story of how I became disabled, there was so much pain and grief in there, I I I was really hurt and you know and and very sad in sharing that story. I think that I it took me 12-years after I became disabled to even start to challenge my own internalized ableism that I had of what it meant to be disabled in this society right, and so if it took me 12-years and now I’ve been disabled for 23-years if it took me that long, I can only imagine uh how and again, the root of all of this is really is ableism and internalized ableism how long it might take other people and again, many people might not even get there because the stigma, discrimination, and bias are so deeply rooted in our society.

And there’s a lot of fear there for people with disclosure, you know, we’ve talked a lot about that in some of our self-help groups for Multiple sclerosis about disclosing when you’re dating, disclosing to get services, disclosing for employment. And the interesting thing is, and we talked about this on episode one, for someone who appears nondisabled, when you look at an employment application, you can really answer, do I have a disability or do I not? You can answer either way, is it based on a medical or is based on your identity? How you answer that probably is based on one of those two, right?

Fer sure. I I think a big part of it is a big part of it is also psychological safety, right? And it it’s heartbreaking to me that we have fear around being ourselves, right? And, and, I’ll say you know you know for for our queer friends I think I think for a long time and still, depending on which country you live in, there is retaliation, right? And one of the things I think a lot about is I I saw this on TikTok and someone asked someone asked a question why do you identify yourself as identity first versus person first as a disabled person, rather than a person with a disability. And, um, the way this person described it was, um, if I describe myself as person-first, person with a disability, it’s kind of like having a backpack and what I mean by that is you can leave your backpack in your seat at the restaurant, as you go to the bathroom or you can leave your backpack at home. So, the question is, can you leave your disability at home when you go out, right?

That was kind of like the imagery they uh they used when describing person-first language. With identity first language, I’m a disabled person, uh, it’s kind of like I would describe it like a jacket on a cold day. And, in order to move about the world, you need that jacket or at least in that environment. And I loved that imagery because my disability impacts how the world sees me and how I move about the world.

If I go to a buffet, those environments cause me anxiety because I want to make sure I can hold my plate and serve food, but that’s difficult if there’s not enough table space to put my plate down. And then if I try to balance it on my injured arm, I’m like nervous it’s going to fall and so in that particular environment, I can’t leave my backpack at home, right? I’m wearing my jacket in that particular scenario. So, when we think about these employment scenarios, that’s when I think it becomes hard right, because so much of how our external world has treated us as a disabled person influences the lens from which we move about the world, but in that particular scenario we we want it to the backpack when we wanna say well, am I disabled or am I not disabled because technically if I’m applying for that job, I feel like I’m totally capable and meet the qualifications to to produce the output that is expected of me.

Wow. That. I love that imagery of a backpack. As you were talking, I just kept having this image of myself in situations where I’d take off the backpack, put the backpack back on. And that’s hard, it’s very emotionally exhausting, as well. Like you were saying, you have to have your jacket on, that is a necessity for you throughout your day-to-day dealings with the physical world around us, right? And, we think about employment, inclusion and employment, how do we get to that point where we say, okay well, with someone with MS it’s okay because one day they may have fatigue or symptoms may flare and they may need to be out for a couple of days, but they can work from home. And how do we kind of wrap our heads around that? The representation piece is huge.

I was talking with a friend of mine the other day and she is looking for a position and she said I want to go to an organization that works strictly with people with disabilities. Because, as someone with a spinal cord injury, who uses a wheelchair, I want to be around other people with disabilities. So, I think that representation piece is so huge in our employment efforts because if you have an employee who maybe doesn’t see themselves represented within the company, are they going to apply to that company? Maybe not because maybe they don’t feel comfortable maybe they haven’t gotten to number two in that origin story or really want to own that and go into a place where it’s going to be uncomfortable and you’re educating and teaching and you’re the only one, right?

With that, there are so many disability focused organizations and nonprofits that exist today. I mean I could name off hundreds. And each one of these focuses on a very specific disability. Like tinier smaller communities within the disability community. It’s difficult then for other people to understand what are we talking about when we use the words disability community? You know, is this something we as members of the disability community need to define outside of the medical diagnoses? Do we know how to talk with people about collaboration within the disability community to kind of bring those silos together? Can you talk about any work or a project you may be working on that closes some of those gaps between each of these smaller disability communities, within the larger disability community?

Sure, I mean there was so much there that I wanted to comment on. So, the first thing I’ll say is that I really love Talila Lewis or TL Lewis’ definition of ableism. And her definition of ableism is when society and people value and place worth on a person based on their body and/or mind. And I think in that conversation around worth, right, and thinking that we’re not worthy, depending on the situation is, is really again inherently rooted in ableism. So, when we think about employers, I I think we really need to do that uncomfortable work of self-analyzing is am I ableist? Hahaha. And, um, and I think that in all of this anti-racism work, many of us are confronting deeply held beliefs that we have either perpetuated by the media or things that we witnessed, that we didn’t actually realize until it came to the forefront.

So, often times what I tell people is that the same type of work that we do around how how we want to be more anti-racist, I hope we can do a similar level of self-reflection and self-work to really better understand what are the deeply rooted ableist beliefs that I hold around a person’s worth because of their body and/or mind. Um, so that was point number one.

Point number two around wanting to be represented. When I was working, so I started my career at Goldman Sachs and then I worked at Bloomberg after and part of the reason why I I wanted to work at Goldman was because I knew they had a disability employee resource group. And, while I was at Bloomberg I helped co-found Bloomberg’s disability employee resource group. And, uh, and of course these groups are for uh people with disabilities and allies or or other employees who might touch disability in one way or another. I think being able to have those spaces is is how we can figure out how we can better retain our employees with disabilities, right? Because we need to have those mirrors, we need to have spaces in the workplace where we can go and talk to other people about their experiences or how to best navigate or ask for accommodations if that’s needed.

And, if I think about why I started Diversability, I almost saw ourselves as the employee resource group for the for outside of the company we’re like the disability employee resource group for the world. Like the world is the company. Haha. You know? Um, and how can we create those spaces for us to come together and talk about that.

I think in response to your question around um large organizations that address a very specific disability, that is very needed. Part of the reason why I wanted Diversability to be cross-disability and pan-disability is that we’re so fragmented by our diagnoses. And, I think, exactly to how you started this conversation, people who do have disabilities uh, choose whether or not they want to be part of the community or not. And that makes it complex, right? Because if we’re not all aligned, of how we feel about disability, how are we supposed to create solidarity and movement forward, right? And I meet, so I meet a lot of people and I tell them about my work with Diversability and I want to create a movement around disability pride, or celebration of a disability identity. And I’ll meet disabled people who say, uh well, I don’t agree with that. I don’t see my disability as part of my identity.

In that case, even though I would I would consider them part of the disability population they are not my core community persona in Diversability, right? That’s why I I embrace this idea of meeting people where they are right? You know, the reason why our group is disabled and nondisabled is maybe you come in and you are disabled and you don’t identify or claim that identity yet, but as a function of meeting other people and seeing other people as either role models or I like to use the term possibilities models, and maybe you see a disabled person working in the corporate world really high up and really celebrates and takes ownership of their disabled identity. Maybe that’s the path you want to take and if you saw a person be able to be successful then maybe you might want to explore what it means to take ownership over your narrative. And meeting people where they are it’s this is what makes disability so exciting haha and an opportunity is because you have we have so many disabled people who don’t disclose and who don’t identify with the community. It does make it hard to uh to uh move things forward, but again, that highlights the diversity within the community.

I will say, one of the things I have heard. I think I saw DREDF. Someone was speaking from this organization and they’ve done a lot of really great work around legislation, disability legislation, and moving things forward from a policy perspective. And, I asked, I said, I run this organization that’s really all about celebrating the diversity that exists within the disability space. How can we ensure that we’re reflecting that in policy? And, what they told me was, this is why we need more solidarity in the disability community, because if there are cracks in the legislation that you’re putting forward or your ideal policy, it’s not going to get passed, right? And, and, I think about even 30-years after the passage of the Americans with Disabilities Act, we’re still not able to recognize the economic empowerment of the of the entire community, right? And, we still have existing policies in place that make it legal to pay people below minimum wage, we still have policies in place and I believe it’s getting rolled out state-by-state, that say if you rely on disability benefits, you can only have $2000 in assets at any one point in time. Again, that’s changing with the passage of the Able Act, state-by-state. I think that again, um, if we’re still holding on to these legacy policies, which once upon a time made sense, but we’re seeing much more vocal disability advocates want to take action but we’re not able to create cross-disability or pan-disability solidarity, then it will take longer for us to achieve disability equity and justice.

Yes. That was so well-stated. One of the things I wanna talk about was the solidarity in bringing legislation forward. So, when I worked at the National Multiple Sclerosis Society, it was a very interesting experience. There were people within the organization who also lived with MS but did not disclose. Well, I was very much about disclosing, given what I had been through leading up to that time. So, I disclosed and I was all on board about how do we move forward efforts for people with MS. And the first barrier that I ran into was the fact that the MS Society didn’t cover the injectable medication that’s usually the first medication you get put on is injectable. This is why it’s so important for people with disabilities or even that specific disability, to have a seat at the table. And I’ve gone to DC and to Sacramento for MS policy and legislation and one of my questions is why we are not partnering with another organization that needs. ALS. Why don’t we partner with ALS so now we’re going to the federal government, to our congressmen and women, to say hey, here’s two organizations; we both need this policy. We’re not going to get anything passed, unless there’s some joined efforts, because we’re putting forth piecemeal legislative and policy efforts between these organizations. So, I do agree with you, I understand the need for them, I also feel like we could all benefit from much more collaboration between organizations to put forth legislation that improves everyone’s lives within the disability community.

One thousand percent. I think that this is something I see in other advocacy, other advocacy movements as well. There’s a lot of criticism of each other’s advocacy. I’ll I’ll say two points. There’s a lot of criticism of each other’s advocacy number one. Number two is I think because again systemically, we have been systemically limited, many of us still operate from a scarcity mindset and we want to transition over to an abundance mindset, right? Which is at the root of collaboration. You know, one plus one equals 15.

The reason why I bring this up is because I think that what I am realizing and there was something that I heard another disability advocate say a little while back and she said, now is the best time to be disabled. And I would argue that today as we’re recording this is the best time to be disabled. And, when this episode goes live, that will be the best time to be disabled. And the reason why I say that is because I think we’re starting to realize how much more powerful we are and how much more influence we have when we actually do collaborate.

And one of the things so, I know that when you and I originally chatted, we wanted to talk about some of the advocacy work that I’m doing as part of the San Francisco Mayor’s Disability Council and I remember when we had that conversation, I was like well, we haven’t really done that much. And, uh, we spent some time meeting earlier kind of reflecting on what our wins were from 2020 and I drafted up a letter to the Mayor about a year ago, asking if she could declare July as Disability Pride Month in San Francisco and if we could light City Hall in blue and white on the anniversary of the ADA and she did. Mayor London Breed did. I mean she signed proclamation and then the Board of Supervisors also declared July as Disability Pride Month in San Francisco and then we got City Hall lit, I mean that was a different office related to the Mayor’s office.

But, when I was talking to another friend about that, another disability advocate, he said Tiffany, don’t downplay what that did for the city. Because what you did even if you think it’s small, it may have enabled other people who saw that small action of just writing a letter to maybe write their own letter about some advocacy thing that maybe they care about, right? And so I think there are all of these trickle affects, every single action that all of us who are vocal within the disability advocacy movement are taking right now. Even you creating this podcast who knows who’s gonna listen and that may empower them to go off and want to do something else. So again, I think I’m catching myself saying Tiffany, like, you celebrate your achievements and what you’re able to do in the context of the power that you were able to have as being part of this Mayor’s Disability Council, right?

And I don’t think I would’ve been able to get that done had I not joined the council, right? And, and, I have a lot of things to say about the council and about how much more work we could be doing, but can’t I just celebrate the win of what we were able to accomplish, as that entity who did have the capacity to have that in line and be able to send that letter to the Mayor’s office.

And I do think that that is absolutely empowering for other people. There’s a lot of work that we do, like you were just talking about, that we don’t stop and say okay, I did a really great job today, this could’ve given someone else power to use their voice. Sometimes we look at the larger, I don’t know, the larger job that we have right? As practitioners in this space and we get kind of overwhelmed because we’re thinking it could be better; I wanted it to be this; I wanted to make a bigger impact. I have also learned in my career that we don’t know how many individual lives we’ve touched, either, and that spreads. Those individual points of connection and conversation all spread to other parts of the community and bring us back together.

There’s a lot of magic that exists within the disability community. I read Alice Wong’s Disability Visability and I was just reading an article that talks about this magic, that was on full display in this book. What do you see as the magic of the disability community? With the work that you do through Diversability?

Mmmmmm, I love that. Um, I do believe in the disability magic. I mean, I think what it is is that we have learned how to survive and thrive in a non-disabled world. And another one of the New York Times’ op ed was written by Liz Jackson, and her piece was called, We are the original live hackers, and so we have learned how to hack our way through a world that isn’t built for us. And I think that the magic comes in when we are able to share. Because one of one of the things after reading that post and I mention this a lot about the original life hackers, is that we are life hacking our way, but we’re we need to do that at scale, right? So, one of the things that I read in the piece, she talked about someone named Jerron Hermon, who’s this really incredible dancer with Cerebral Palsy. And, when he goes to eat waffles, he asks for a pizza cutter because it helps him cut the waffles with one hand.

And so I’m one-handed but I have a different diagnosis , but I thought that was so genius, but I had never thought of it, right? So, we’re all life-hacking. Um, but the magic comes in when we are able to be in community. And again, I think this is a beautiful way to kind of go back to what this conversation was about which is the magic really comes in when we realize how much potential we have in resource-sharing with each other, in sharing our individual magic with each other, and I really do believe that in community, we start to realize how much power and influence we do have to move mountains and hopefully, you know, the person who’s listening to this, that day is the best day to be disabled for them.

Okay, so we are nearing the end and I want to ask one last final question before we say our goodbyes. What is a disability ally, and how can our listeners become one today? This is the change piece of the podcast. What can our listeners do today after listening to our conversation to become a disability ally?

That is a question that needs its own podcast. I started something inspired by my friend. I have a friend named Nicole Cardoza and she started a newsletter called the anti-racism daily and um I uh I don’t have the writing chops or maybe I do, but I didn’t start a newsletter, but I decided to start some really short-from video series called Anti-Ableism Daily and every single day, I share either some fact that people need to know about or some language that’s outdated or some other action that we can all be better allies. But, I think to be a better ally, I guess I’ll say two things. One, please get to know as many disabled people as possible follow them on social media, engage with their posts, build relationships with them that are equal, right?

When I created Diversabiltiy, again we are disabled and nondisabled, the nondisabled people who are part of our community are not volunteering for us. Because I don’t want them to feel good about themselves by just being our friends. I don’t want someone to feel like they’re volunteering to be my friend. I actually want to create equal peer-to-peer relationships of people who care about each other, disabled and nondisabled. That is actually how you change hearts and minds, is getting to know and and even I’m learning this because I feel like I existed in my own silo and I know I can be a better ally to my own community, as well. That was number one.

Number two is, I think we really need to be more aware of the language we use when we talk about disability. So, if I think about the latest video of my anti-ableism daily, it was about how when I tell people that I’m disabled, their response is I’m sorry. And, you know, like, what what do you way to that right? And then people are commenting on my video saying well, should I say cool? And I’m like. Yeah, that’s fine right? Because what I’m hoping is that when you tell someone you have MS and I tell someone that my arm is paralyzed, they’re like coo, right? You even talk about it right, how you mention that you have a flare up and you move onto the next part, but that person is still hung-up on the MS, the diagnosis, and the flare-up. And we need to actively catch ourselves there right?

I mean again, the language we use to talk about disability is so disempowering and that further perpetuates narratives about those of us who don’t have disabilities feel about disability and even those of us who are disabled feel about disability. That’s why we have so many disabled people who aren’t disclosing or claiming a disability identify, right, because the way we talk about disability is so disempowering as it currently exists.

It absolutely is. Tiffany, I’m so happy that we were able to have this conversation; I really appreciate it and thank you. I’ve enjoyed every minute; I feel like we could go on and on. Maybe we’ll have to go back to; maybe in season 2 we’ll have to have a conversation about disability ally and that will be the whole conversation. Because I think that would be a great conversation for listeners to hear. Because even for those of us who have an invisible disability, I’m not always the best at advocating for myself with maybe family and friends in explaining that or using the right language. It’s something that we all can really work on each day.

To our listeners, if you’d like to learn more about the work Tiffany is doing in the disability equity and inclusion space, please check-out the Diversability website at www.mydiversability.com. I know you have a large community on Facebook, as well. So, where can listeners find you on social media, Tiffany?

Those two places are great places. We do we do have this Facebook community; nondisabled allies ae welcome Um and are encouraged to join because I think that, going back to this allyship point, we want people to listen to the conversations that we’re having because if you can more intimately understand the conversations that we’re having with ourselves than you can be an ally for us in the spaces that we don’t have access to.

Yes, exactly. Tiffany, thank you again. I wish you the best day! I’m so grateful to have this conversation with you and I appreciate your time.

For sure. Thanks, Sarah.

Thanks, Tiffany.

And once again to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! brought to you by Eye Level Communications, LLC. Eye Level is a California based woman and disability owned small business committed to having critical conversations at Eye Level that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website @www.eyelevel.works. You can also email me directly with any podcast, episode ideas or questions and comments @[email protected]. Remember to put your disability lens on when you look at the world and tune in next week for another stimulating conversation on Incluse This!, the podcast, that’s really a movement take care and be well.

GUEST: Jourdan Saunders, MS, CCC-SLP, Founder of The Resource Key

https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E3_Words_Are_Powerful.mp3

How powerful are the words we use? What effect do words have on how we interpret information? In this episode, host Sarah Kirwan and guest Jourdan Saunders, have a down-to-earth conversation about words, words, and more words. Listeners will walk away with a better understanding of how powerful words are, within the framework of disability, woke capitalism, relationships, plain language, getting comfortable in our conversations, the Americans with Disabilities Act (ADA), and much more.

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Jourdan Saunders, MS, CCC-SLP is a Speech Language Pathologist, Disability Inclusion Consultant, Author, and Resource Generator. She develops solutions to ensure people with disabilities are included and are making meaningful connections with brands.

Jourdan is the founder of The Resource Key providing consulting services using innovative approaches, research based industry resources, and advising companies to ensure People with Disabilities are included, and making meaningful connections with brands. She is the owner of one of the largest SLP resources group with over 15,000 followers. Jourdan has written several articles for non-profit organizations, major magazines, and online resources. Her work has been featured in USA Gymnastics, American Speech Language Hearing Association (ASHA), MarketWatch, Association of University Centers on Disability, and Kennedy Center.

Hi, and welcome to Incluse This! This I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Jourdan Saunders, and we’re talking about how powerful words are. Jourdan Saunders is a speech language pathologist, a disability inclusion consultant, author, and resource generator. She is the founder of The Resource Key, a business providing consulting services that use innovative approaches, research-based industry resources, and advising companies to ensure people with disabilities are included. And also making meaningful connections with brands. She’s the owner of one of the largest resources group with more than 15,000 followers.

Jourdan has written several articles for nonprofit magazines, and organizations, and online resources. Her work has been featured in USA Gymnastics, American Speech-Language-Hearing Association, MarketWatch, Association of University Centers on Disabilities, and The Kennedy Center. Jourdan established one of the first resource websites for students interested in the field of speech language pathology, Future SLPs, which has received recognition worldwide. Recently, she created a program that infuses art and reading literacy skills entitled Design Read Create. Jourdan is the author of Our Reading Literacy Kitchen: Fresh Approaches to Target Reading Literacy Skills. And with that, let’s dive in.

Welcome to Incluse This! Jourdan. I am super thrilled to be here with you today talking about words, words, and more words.

Thank you so much for having me, Sarah. I am honored to be here with you on this podcast. And words can be used in a positive way or a negative way.

So you and I met virtually last September, and I remember exactly why I got ahold of you. Because I all of a sudden got pretty active on LinkedIn, and I wanted to see who was posting in the disability, equity, and inclusion space. And I just remember seeing all of your posts that were very well done, well messaged. I completely understood what it is that your company The Resource Key does in this space. And I just really wanted to reach out to you and learn from you, which I’ve already been doing. And I’m just really looking forward to learning more as you and I continue to partner, and have conversations, and learn and move forward together in this space, and just do our best to bring disability to the forefront of that greater diversity conversation.

During the first virtual meet and greet we had over Zoom, I remember using the word able-bodied. And then you used the word non-disabled, which kicked off this incredible discussion about words, the intent behind them, the power they hold, and the effect they have on others. And that’s really what led us to being here together today.

Yes. For me, I have read a lot of information in how these words are used, really looking at the impact of these words. I use the word non-disabled because it is a neutral term. Anyone at any point can have a disability at any time. So I consider myself to be non-disabled. So I think it is important though, to read the history behind some of the words that we use.

What happens when words change or things shift on an individual level sometimes, if we think words are negative and we should no longer use them, we want everyone to start using the new words immediately. But it’s not that easy sometimes.

For example, I was reading an article from the New York Times. And in the article, it specifically stated how historians have traced America’s welfare system to England’s 1601 Poor Law. And in that, the word able-bodied is included in this law. I was reading this, I think it was about two days ago. And I think that’s interesting because 1601 let’s say, what is that? 400 years ago. Over 400 years ago. So I think that’s important to point out because able-bodied according to this New York Times article has been used for many years. And it’s hard to stop using certain terms sometimes because maybe on an individual level, we want someone to stop using the terms because we feel that it may be offensive. But then you look at the system, the structure, the history behind these words. And it’s not that simple sometimes when we look at it from the broader perspective. Also, able-bodied is still used in some government reports as well.

So that’s why I think it’s important to listen to one another, understand how words are used in different contexts. Because even non-disabled has some controversy too. Because people with disabilities are a minority group. And may I add, one of the largest minority groups. So when we look at, I use the non-disabled. But if we look at I’m Black, and if someone were to say that they are non-Black, then it wouldn’t make sense in those contexts because we usually don’t say we are non-Black.

So it’s never as straightforward as we would like it to be, but that’s why I think it ultimately comes down to continuing to have these conversations like we’re having and keeping the dialogue open. So I want to make something very clear before we move on, because I’m sure it won’t be the last time I say this throughout our talk. But we have to be willing to listen, communicate, be patient, and research on our own to delve into some of the words we use, why we use them, providing the context, what is the history behind them. And I think this sparks continued going dialogue, because just because we use these specific words today, does not mean we are going to use those same exact words one month later, two years later, or even next week.

I think the important thing to remember in there is that it is also scary when we don’t know the appropriate terms to use, when we don’t know the right words to use. What you and I have talked about is that it is really important to just have the conversations, even if we are making those mistakes along the way. That’s okay. Let’s have the conversation because they are ever-evolving terms and words. So they’re going to change. And that’s fine. Then we’ll evolve and change with them.

I’m glad that you expanded a little bit upon the able-bodied piece, because we will touch on that a little bit later. But I just want to talk a little bit about the history of the disability community. And historically, people with disabilities have been erased from mainstream culture, right? So those of us who are living with disabilities find these smaller, more supportive groups within the disability community. Because this is a space where we can feel free and comfortable to talk about our experiences and our feelings.

For me, I found that space when I started playing wheelchair basketball. I was an assistant hospital administrator and public information officer for Rancho Los Amigos National Rehabilitation Center. It was really the first space where I could go and people understood what fatigue was. We shared some similar symptoms, day-to-day symptoms, but also had very different experiences with our disabilities.

So I definitely feel like it’s a little awkward for me to talk freely and openly about what I experienced with my disabilities, because there’s a lack of understanding because we’re not educating well enough. People have a tendency to feel sad or sorry. Sometimes they’re just completely uncomfortable or uninterested. For me, it’s more that I’ll just pepper it into a conversation because I’m so used to it. Right? So I’ll just say, “Oh yeah, well I was diagnosed 10 years ago,” and I move on with the story. But I forget that for them, they stop on that and think, “Oh my gosh, I really need to address that MS. She’s sharing this with me, and I need to address that.” But it’s more for me just adding to the story, if that makes sense. Or adding context to the story I guess. But it usually turns into a conversation about when I was diagnosed, what kind of symptoms I have. And what their fathers, aunts, daughter, does for her MS which I should for sure do for mine.

So if our intention is to make it possible for disabled people to find an increased level of comfort and acceptance in the wider non-disabled world, then we all have to get comfortable talking about disability, right? Including me. And that’s obviously much easier said than done, because it makes people feel anxious to think about saying the wrong thing like we just touched upon. So again, I’ll go back to when you and I first spoke, we both agreed that having the conversations and making the mistakes that we’re bound to make is much more important than not having the conversations at all.

There are a lot of articles written about choosing words for talking about disability. We also see articles about the language of disability and disability microaggressions which are also commonly I guess within the disability community known as ableist things that people say.

Before we move on any further, I just feel like some of our listeners may not be familiar with the term ableist. So I just want to start there and figure out what all this means. Jourdan, would you untangle this mess of confusion?

Yes.

What this means. What’s the difference between words I use, or the language I use, or what’s a microaggression against people with disabilities?

Dictionary definition of ableism is discrimination or prejudice against individuals with disabilities. So it could also be systematic exclusion, oppression of people with disabilities. And this is often expressed and reinforced through the language that we use that could be demeaning, or looking down on others, thinking that someone is lesser than someone else.

So an example of this would be, let’s take the word confined. Ableist language could be, “She is confined to a wheelchair.” Someone can say instead, “She is a wheelchair user.” So that’s giving you an example of ableist language. And sometimes the context that we may hear this word being used, and how that could be taken as something that could be demeaning, or something that makes someone feel lesser.

Crazy is another word that we use a lot on a daily basis to describe a number of different things. But that’s also ableist language. So instead of saying, “My family is crazy about football,” maybe saying something like, “My family loves football.” So those are some examples regarding ableist language.

So it’s very interesting when you talk about the wheelchair user. That’s one thing that I’ve had to learn. The wheelchair is really the extension of the person and a representation of independence. Right? I do find it hard though when I read articles where some people are talking about disability words, and some people are talking about disability language. Now words are obviously just smaller pieces of the language that we use. How do you define those? Why are they different, and why are they both important?

Yeah, that’s a great question. So words are ultimately like you said, the smaller units of the language and a whole, as it’s all related, I should say. So I think it’s important though, to look at the words first to understand the meaning behind when we use these different words. And then when you’re using it in your everyday language, I think it’s important to look at the context surrounding how you’re using these words. Because that ultimately can be factor of all right, I have this word. Now I’m going to use it in the course of the language and how I talk around my friends or in the community. And all of those things look different based on the context surrounding how we’re using them or the way we’re putting together, the syntax of how we’re putting together, using these words in the context, just like the examples I gave. And how much of an impact the word can have when it’s used in different settings, or the way it’s used when we’re discussing different things.

So I want to touch on microaggression, because I know we talked about ableist language, ableism, all of those different pieces. So microaggression is something that it’s subtle. It’s unconscious maybe, or the person maybe unintentionally is expressing something. But it takes on many forms in different settings, but it can be prejudice or discrimination to whoever you’re talking to. And you may not even realize you’re doing that.

So an example for me is I have naturally curly hair, and I remember going to an interview. And someone, I don’t think they intentionally meant it, but it was a microaggression because someone said, “Are you planning to wear your hair like that if you start this job?” So that’s an example of a microaggression. Maybe they weren’t intentionally, I don’t know if they were intentionally meaning it, but it was a microaggression. And it was discriminatory because it was talking about my hair. And maybe there’s no other ways that I could wear my hair.

So within the disability community, I think it goes back to using the word confined maybe or using the word crazy. Crazy is one that probably sticks out the most because it’s something that we’ve probably all at some point used that word not intending to hurt someone, but it could be hurtful in a sense of if someone has any type of mental health, that’s a term that a lot of times crazy is loosely used in everyday conversation. And maybe it’s because we haven’t taken time to think of a different word, or maybe there’s not a word that came to mind at the time. But that could be taken as well as a microaggression.

Yeah. I think that I use the word, would I just say, “That’s so crazy.” That is a very common thing that in the past I have said. And that’s one thing I’ve really had to be cognizant of. I struggle with depression and anxiety. I feel like that’s something that I need to be more cognizant of as well, because those are hurtful words.

I’ve used crazy as well. I think just in the context of like I said every day. And it has made me, as I read more and delve, it makes you more conscious and it makes us more when we do the work, and take the time to read, and listen to others, I think it makes us more intentional when we’re having these different conversations to choose a different word.

Absolutely. And that kind of goes back to the first episode that I had with Molly Bloom. And we were talking just about the intention behind words and how we can choose to be more intentional with the words and the language that we use. Now would this be a microaggression if someone says to me, “Well, you don’t look like you have a disability”?

Yes. Yeah, that’s one I’ve seen a lot too in terms of when I’m reading different things. There’s a lot of articles about, that’s a very one up there in terms of what’s crazy as well.

That is just almost a very marginalizing term or dismissive I guess in a way. It’s a dismissive term. So something that’s very real to you and part of your identity is just so flippantly dismissed. So yeah, those words do have real meeting and real power.

And before we move on, we’ve talked a lot about ableism. And I want to talk a little bit about one more term, which is something that I’ve just learned about recently, which is anti-Black ableism. And I’ve done a lot of research with Colin Kaepernick’s media group around disability justice and policing in prisons. There is one journalist, her name is Talila A. Lewis, and she writes a lot of the articles for his media group. And she says that anti-Black ableism is redundant and contradictory simultaneously, because ableism and anti-blackness are mutually inclusive and mutually dependent. So, you can’t have one without the other. And you can’t adjectivally modify one with the other. Because where one is, they both must be. Each oppression does modify how a person experiences the other oppression. So they do modify the other in the literal sense.

Now I think this is really interesting, and it goes back to the conversation that we’ve had about intersectionality and intersection of disability race, disability gender, disability sexual orientation, etc. Do you have experience around the anti-Black ableism comments, maybe those microaggressions that you could share with us so that we could identify or help to see those more in our daily lives so that then we can be more intentional with our words?

So I wouldn’t be able to speak on this. And I say this because I think you were the first person that brought this word up. And I didn’t know what specifically it meant in the context that it was used. So I did some research. I was reading some of the other writings that she’s done. And one of the writings that she said it quoted, “I know that there is something more needed to make this very unique experience that Black people have with ableism more clear. Still, I believe anti-Black ableism does not succeed in achieving the necessary clarity, and that it may cause more harm to the effort being sought by those using the term.” So it sounds like she was the first person to use this term. And I could be wrong. You can correct me if I’m wrong. Because I haven’t seen much research, or much information, or enough conversations to be able to describe what it specifically means.

I think her coming on or her having a conversation about what it specifically means, because even that is her words verbatim in the writing that I was reading from her. So I think we need more clarity, or I would need more clarity around this term before I would be able to actually use it and be able to provide you more information on how important this term is and what it means.

Because for me, what this means just from a whole is that we need more people saving a seat at the table for Black disabled voices to share their experiences. And also to add on what you were saying, we need to be talking about intersectionality. And intersectionality as it relates to disability justice.

One of the other things that I love that she brought up in another piece was she said, “We must find ways to name how ableism is uniquely felt and experienced by Black people. Or we are not doing justice to how the long-term, inescapable, and inextricable bond between racism and ableism places Black non-disabled, Black disabled, and Black people who are labeled disabled in mortal danger with no recourse.” So I would love to read more and continue to follow this term, but it just seems that there’s not enough information. And she was stating that the people that are using the term may not be using it in the way that she initially had I guess envisioned the term being used.

I guess I didn’t realize that that was a term that she had brought forth. I think it’s really interesting, and I would love to hear more from her on it. And I actually invited her to be a guest on the podcast, but her schedule is too busy. So-

That would have been awesome if at some point maybe I don’t know, or if she comes out with more. I could be completely wrong, like I said, but I couldn’t find much on the term outside of her posts on her website.

Yeah. Well, that’s all that I found. That’s exactly what I found. So yeah, I’m going to have to do some more research on that. But I do think it is a very unique experience. When you look at the layers of intersectionality, how one experiences each of those oppressions in a different way, but all in relationship to one another.

As you had stated earlier, and I kind of want to go back to this. The disability terminology that we use, like we’re just talking about anti-Black ableism. That may be something that Talila A. Lewis has coined. Maybe people are using it appropriately or differently than how she had envisioned it or imagined it. We’ll have to do some more research around that.

But when we look at other more common terms like neurodiversity or neurodiverse, disabled people, or people with disabilities, able-bodied, or non-disabled, accessibility, usability, or inclusion, how do we effectively choose the words and language? And you touched on it a little bit previously, but how do we effectively choose with our intentions, the language and the words that we use so that we can actually drive inclusion and equity for people with disabilities?

A lot of times when we have these different words that are created, and I think it kind of goes back to what we were talking about earlier. They’re used at different points in times. And then when they are no longer representative of the words that we may use currently, it takes time for shift to occur. And a lot of times, that shift is not aligned with how quickly we want the words to not be used anymore. So it creates this disconnect because on one hand, we are saying these words should not be used, or to use this word instead. But on the other hand, these words are still used in definitions or important government documents.

So for example, I used to use the word special needs. This was years ago. So it was right after I got out of grad school. I wrote an article. One of the articles was about Incorporating Children with Special Needs into Gymnastics. And that was the exact title. Now, if I were to have written that same article, I would entitle it Incorporating Children with Disabilities into Gymnastics. I’m aware of that because I’ve continued to keep up on different research words, listening to people telling me their viewpoints, and just doing my own research. But so according to the National Center on Disability and Journalism, special needs popularized in the U.S. in the early 20th century during a push for special needs education to serve people of all kinds of different disabilities. So now though if you read on the website, the word special in relation to those with disabilities is now widely considered offensive. So these are the things that, and why it’s important to continuing to have these ongoing conversations. Accessibility looks different when you’re out going to a restaurant, and you need access to, if you’re a wheelchair user and you need a ramp to access to get inside of the building. But if you’re online, it could be different in terms of digitally how you’re accessing a website to shop.

So I think we have to look at settings, because words take on different meanings when you’re in different settings or locations. They take on different meanings depending on who you’re talking to. Right? So if I’m writing a report, I may still need to use able-bodied, or special needs, or special education, or something along those lines depending on the requirements. But if I’m out in the community with a family or something like that, and they’ve already shared with me they don’t like it when I say, “Your child with special needs.” They want me to say disability, those are all of the things why it’s important to have these ongoing conversations and why it’s important to look at more than just the word. We have to look at all the different things that surround the words that we use.

And the other thing is the Americans with Disabilities Act requires state and local governments, and businesses, and nonprofits who serve the public to provide an effective disability communications plan. Right? This basically means that whatever these entities communicate, whether it be written or spoken, has to be equally clear and understandable for people with and without disabilities.

So as a former hospital administrator and public information officer as I said before, we called this plain language. We always said plain language works best. And recently, the nonprofit investigative news organizations, ProPublica, which I actually think you shared this article with me. They launched an experiment using ultra-accessible plain language in stories about disabilities. Can you help us to understand what plain language is, and how would we incorporate this type of language into our personal and professional communication styles?

So essentially, plain language is keeping it simple. It’s communication. Anyone can ideally be able to understand the first time they read or hear it. It’s accessible. It reminds me of when I was working in the school systems, we would sit in IEP meetings or individualized educational plan meetings. And if we’re talking to parents, there’s specific terms and the speech language pathology world that a parent may be unfamiliar with because they’re not in the speech language pathology field. So we needed to make the language or all the information and the words as simplistic as possible, so that they could understand the important information that we were sharing.

We can look at different industries, and how in specific industries there’s acronyms or words that you may use that may mean something completely different in a different industry. So when you’re communicating to someone that may not be familiar with your industry or the words that you’re used, you’re going to have to use some other type of words to make it so that the person can understand what you are talking about the first time around. Because of not, it becomes confusing. And ultimately, you could lose the person that you’re talking to.

So plain language is ultimately about keeping it simple so that anyone that picks up a document or anyone that’s listening to you can ideally understand what you’re talking about.

As you touched upon currently, there are different industries and organizations who use different terminology when referring to and writing about disability. You and I learned during this process of collaboration and partnering, that the Associated Press, the American Psychological Association, and the Modern Language Association don’t publish best practices or standards for effective disability communications. The only style guide that you and I were able to find was The National Center on Disability and Journalism NCDJ at Arizona State University. With a lack of clear standards and everyone using different words, disability, inclusion, and equity practitioners find themselves in this constantly evolving space. How do we overcome these challenges? I think my initial question was, would it be better to standardize the terms across industries? Is that something that we should be pushing towards? Is it better to have a variety of terminology because it’s really specific to each industry? What are your thoughts?

I think standardizing is always beneficial or having different systems in place. But just like anything else, these things change. Ultimately, we have to continue to stay flexible to be able to shift. It’s just like if you’re getting professional development courses on an annual basis, you are having to stay abreast of what’s going on maybe in your field or things of that nature. So it’s definitely nice to have standards because that’s a great starting point, but it’s just as important to take the time to educate yourself and listen to people with disabilities, listen in the community. There’s a lot of different tools I know that we’ve talked about, and you shared one of them. With social media and all of these different things, hashtags, and alternative tax or alt text. All of these things are important as well. So if we’re talking about standardizing, some of these are great ways as well if we’re looking at social media. And a lot of times, we have these different features. So alt text is on Twitter, LinkedIn, Facebook. But if we don’t know what alt text is used for, and if we don’t know where to find it, and we’ve never even heard of it, there’s where that education piece comes in terms of continuing to educate and share this information so that we can be more aware of how we can make tools more accessible and how we can be more inclusive.

You and I talked a lot about accessibility on social media platforms. And one of the things that I thought was really interesting, and I’m going to touch back on this a little bit more, is the hashtag, the use of hashtags. So I didn’t realize that when we do hashtag everything lower case, that when someone has an e-reader that may read that article to them, it will jumble up that message. Right? So if I say #eyelevelworks, it will come out to them hashtag [inaudible 00:35:01]. Whereas if we capitalize each individual word, so eye capital E, level capital L, works capital W. Then that e-reader can actually read that statement to them in a way that they can understand and process, which I think is really cool.

So then we did some research to find out, would that change the algorithms, or the search, or could people not follow it? But it does not make a difference. But yet, we still find that when we initially go to type in that hashtag, it comes up and auto-populates automatically to lowercase letters. To me, that seems like something that we could easily make accessible if we just auto-populated those with caps.

Before I answer that, I think you may have meant screen reader.

And that’s why we have these conversations, right? We said, let’s have the conversation. I said e-reader, it should be screen reader. We need to have these conversations, and be okay and vulnerable to make mistakes.

Exactly. Yes. So what you were saying about the hashtags, I am not sure how many times it takes before it’s populated into the system. So that’s why I would think it would need to be something manual that would have to be done behind the scenes. But I’m not sure of all of those things. Because probably not enough people are capitalizing, because I didn’t even realize that myself until we started delving and having this conversation. So it has to be more people that are using it, or I imagine Twitter or LinkedIn and all of those other social media outlets have to go in behind the scenes and add that so it will start to populate that way.

The other thing we talked about is website accessibility.

For anyone listening that’s not familiar with a screen reader, so the screen reader is an assistive technology. A type of technology that assists a person who is blind or visually impaired to use their computer. So that’s what a screen reader is a form of assistive technology. So if you don’t have certain things like alt text or alternative text, which is the description of pictures. So if you post an image on Instagram let’s say, there is a feature in advanced settings, and you can Google how to add alt text. There’s a feature in advanced settings where you can add alt text. And what you would do is you’re going to type a description of the image that you’re going to post. And it’s conveying the main point of the image. What is the image showing? What’s the overall main point of the image? So that’s why it’s important to have these different things in place, because we want everyone to be able to access the information that we’re providing. And there’s many other people as well that may use a screen reader for assistive technology. So we want to make sure no one’s left out when we’re posting pictures or any of the other things that we do online, especially with everything being online now. Everything. It’s everything. It really is.

It really is everything at this point, I feel like. And these are pretty, relatively simple things that we can do each day. Watch our hashtags, add alt text. I’m guilty of that. I need to go back into a lot of my posts and actually add alt text. Because I wasn’t aware of the need for that accessibility tool either. So it’s good for all of us to learn. Again, have these conversations and learn. And again, we’re being flexible, right? We’re learning new terminologies. We’re learning how to refer to things, definitions of words, all of these.

One of the things that you and I talked about is the importance of collaboration in this space. I think I want to kind of tie that into the building of trust, also in this space. Because when we first started talking about speech language pathology, you shared with me that it really is taught from a medical perspective that somewhat excludes the personal patient perspective and that experience. But we know that trust and collaboration, right, even between a patient and provider, is so extremely important?

I was recently at a neurologist visit, and I needed to get fatigue medication filled, and I needed to go through my MRI results. It was a list of things. I’m very organized. I have a whole list. So I feel like when I come in the door, they’re already kind of prickly paired because I’ve over-prepared, I’ve researched, I’m a self-advocate. When we receive different words in language and even body language from our providers, a trust is betrayed.

For example, my fatigue medication is a controlled substance. It’s used for ADHD consistently, Adderall. And it’s used for fatigue for people with multiple sclerosis. It has been so difficult for me just to get this prescription filled given the nature of it. I felt very much like a drug seeker as I was asking my own provider to refill this prescription for me. Being put in that situation where you’re constantly defending yourself and you feel defensive, and shameful, and guilty that you’re asking for this, and you’re not getting what you need. So we talk about that trust, right? And that trust for me that day was broken.

When we look about the work we’re doing, trust is the most important part of this work. And you bring this perspective to the work that you do with your company, The Resource Key. And you are actually bringing this perspective to the world of academia, because you have talked about how we effectively build trust in this space. Can you share with our listeners work that you do in that area? I think it’s really important.

Yeah. So the overall goal at The Resource Key is building inclusive and impactful brands through inclusive marketing and business coaching services. So that’s the ultimate goal. And the priority is making sure that people with disabilities are included, and making connections with these brands. Okay? So we’re looking at the inclusion part, and the accessibility piece.

So through all of this work, we’re building community, right? So I think that’s one of that most important things just in general. In businesses, in any type of setting is the community that you are building through the work that you are doing. So it’s relationship building.

I have reached out and created a team of incredible community experts that I work with. And that piece is really important because it’s taking the time to listen, to learn from a different perspective outside of my own. So The Resource Key community experts provide valuable resources about inclusion and accessibility in the community, from their first person experiences. They also provide their industry expertise to contribute important information about why disability inclusion is important across all industries. So they’re all in different industries ranging from modeling, to life coach, to law. So I think it goes back to what we were saying in terms of the plain language. Because sometimes, what happens and why you’re able to communicate maybe better with one person than the other person is surrounding the words that we use. So that’s why it was important collaborating with them, because they already are familiar with the industry terms as well. So they’re able to have those conversations within their industries using the language that is familiar, while embedding those pieces of how important it is with inclusion accessibility and including people with disabilities.

So the work that we do is based on branding, marketing, and all of those different things. But the most important work that I think we do is we’re building and creating these safe spaces to cross-collaborate with other businesses across industries. All of these different things that I think are taken for granted sometimes when we are building the financial part as important, because it’s your livelihood and all of those things. But the relationship part I think is very important, because that is what’s going to continue these important conversations. And it’s also creating those spaces where you feel safe.

They always say it takes years sometimes to build trust. But it can take one day or a few words to lose that trust. So I think it’s important that we continue to create these safe spaces and we continue to build these relationships so that we’re also building stronger brands and stronger businesses as well.

I love that. I think it really ties into what you and I have talked about experience in this space, whether it be professional, or personal lived, or otherwise. We’ve also talked about the importance of active listening, empathy. And I think these are all very important as we build trust in this space and important as we cross-collaborate into different industries, because the words that we use are different in each industry. Aligning those all to equity and inclusion is what I really like about what you’ve said, because those terms are going to be different. People within the industry have that experience. And if we can align with that to ensure that inclusion equity piece, that’s the most important. We build that relationship, and we just build a larger movement to bring disability to the forefront of the greater conversation that we’re having around diversity, equity, and inclusion. Which often leaves disability completely out of the mix.

So as we’re wrapping this up today, we’ve talked a lot about words, right? We’ve talked a lot about what we say in the context that we say it. And we also know how long we say something has an impact, right? That messaging, that consistent messaging has an impact. Using those words consistently over decades has an impact on people and the oppression that they face. Living with a disability, being a person of color with a disability, those experiences are all different and multilayered. So it really helps when we understand how the words that we use may impact those around us.

Sarah Kirwan:

So as we wrap this up, what do you want our listeners to take away from our conversation today that they can take into the world and start making change, don’t have to have a big platform or a company that’s doing this work? What can we just do in our daily lives?

Yes. So you just brought up a great point. I always say my definition that I always think of inclusion is inclusion in an action, and it’s included in our daily habits, right? So I think one of the things to keep in mind is of course the most important thing, hiring people with disabilities, including them on your boards and in leadership roles. Be patient. Patience is just so important I think with any of this. You’re going to get frustrated along the way, I’m sure. And also too, you may not get the response when you’re trying to learn new words.

Jourdan Saunders:

Because what happens a lot of times is we’re pumped up, we’re ready to learn and listen to other voices. And we may ask someone the wrong thing, and they may say it in a way that is offensive to us or hurtful. But you have to understand too, the context behind that. People with disabilities have been fighting for years and years for quality equity, all of these different things. So just because you may not get the response or the excitement that you want when you’re asking about words or you say the wrong thing, doesn’t mean that it means to stop doing that important work and having these important conversations. Because there’s a lot of emotions behind all of this, right? So we have to make sure that we continue to, even when we don’t get the response that we may be looking for, I think it’s important to keep going, right?

Jourdan Saunders:

Because we are all going through our own word journey. And along each person’s journey, you’re going to meet people that may be on the same page as you than others. So you may describe that moment as, “Oh wow. They just get it.” But we have to be 100% clear that not every person we encounter is just going to get it and be able to be up to date on the current shifts, or the changes in words, or the language that’s occurring at a rapid rate. So it is imperative that we’re intentional and that we’re listening.

Jourdan Saunders:

And being intentional about inclusion, right? So I think it’s important to save a seat at the table for people that don’t look like you, or have the same perspective as you. So that saving that seat, it’s intentional, right? The person’s not just pulling a seat up at the table, you’re saving them because you want to engage. You want to have these conversations. So I think that’s important. The small things that you can be doing. Say hi, wave to people that you usually may avoid because you’re uncomfortable or you don’t know what to say. Start by waving, acknowledging them, saying hi. And maybe you see the same person every day, and the person may you sign language to communicate. You could learn a sign for how to say hi, or how are you doing? Those are different, small, actionable items that can be incorporated in your daily life. It doesn’t have to be big things to start out with, because the small things are just as important as the big things.

Jourdan Saunders:

I think it’s also important to educate young people. Because they’re watching, observing everything. And they are learning from us as well as they’re doing work too in educating.

Jourdan Saunders:

I had a student years ago. And one of the things I’ll never forget is I overheard my student talking to another student and they said, “I don’t understand why just because I’m blind, people always get nervous using the word see and look in conversation when speaking to me. I think it is so funny because I hear it in their voice that they’re nervous saying those words. I always have to reassure them that I am blind, but I still use those words too when referring to things in my environment.” And I thought this was so powerful because it’s like that education piece just from being educated too, just by being a bystander as well. You may overhear conversations like that just in your daily routine. So you can take those things in as well. Because a lot of times, we’re not going to say certain things if we’re in uncomfortable settings. But if you’re talking to a friend, in that case the student was talking to a friend of theirs. You’re going to say some of these things that are just as important as the sitting down part as well with people with disabilities.

Jourdan Saunders:

So we have the power to use our words to make a positive impact, to bring about positive change, and most importantly, to build up community. So if you remember nothing else that we’ve talked about, I think it’s important to remember that we do not need to get stuck on which words to use that we freeze up and don’t do anything. Because there’s so much work to be done to continue to move these important conversations forward about diversity, inclusion, accessibility, and equity for all.

Sarah Kirwan:

I think that you said that so beautifully. When I first started playing wheelchair basketball and I first started working at Rancho, the hospital, I would find myself feeling very awkward saying to a friend of mine who’s a wheelchair user, saying, “Hey, you want to run over to Starbucks,” or, “You want to walk over to Starbucks and we’ll grab something?” And you almost find yourself wanting to say it. And then you try to say or roll, you know what I mean? You’re like, “Do you want to just go there?” So the comfortable thing and the great thing is when we build up this trust in this space and we can feel comfortable having these conversations where they can just laugh at me and be like, “Yeah Sarah, it’s fine. Just say, ‘Do you want to walk over there quick?’ You don’t have to think about it for 10 minutes before you say it.”

Sarah Kirwan:

So that’s something that we really need to take into consideration. Because people do pick up on your body language or your hesitancy to say something. I think I just hesitated as we were speaking on this podcast. It was about the screen readers.

Sarah Kirwan:

Anyway, the other thing, the other story I want to share really quickly, this was a big learning opportunity for me. I had a client in Colorado, intellectual and developmental disability service provider. And I was business development with them. And I had spent a lot of time with physical disabilities, not so much with IDD, intellectual developmental disabilities. So I hadn’t been around this community as much. But I was really learning a lot, I was engaging, and I was really enjoying the people, and getting to know them, and all of that.

Sarah Kirwan:

So I think I’m really getting this, right? It’s been a few months and I’m getting into this. And one day I stop at Target I think it was on the way home from meeting with their CEO, and I’m on the way home, stop at Target. And I go in. And I see a woman with an adult child with IDD. And he starts throwing a fit. And you could tell that his mother was extremely embarrassed. She didn’t really know kind of how to handle it. I was also in the aisle at the same time. So what I did, how I handled it was that I actually went into a different aisle. And my thinking behind that was I think that she already feels uncomfortable. So I should go into the other aisle to give her some space with her son. I was thinking it was a very respectful action or behavior that I did.

Sarah Kirwan:

Flip side of that, as I was driving home later, I was thinking to myself I wonder if I made her feel more ostracized and more uncomfortable because I didn’t acknowledge. I didn’t say hello. I didn’t say anything. So I started to think about how my lack of words and using my words to include somebody made an impact that day. And when I talked to the CEO the next day, I asked him, I said, “What should I do better in the next situation?” And he suggested, and some of the parents suggested that I could say, “Hey, you got this.” Or, “It looks like a hard day, but you’re doing great. We all go through days like this.” As opposed to not acknowledging or having that conversation.

Sarah Kirwan:

So I think having some self-awareness is really important. I think we need to ask those questions and really be intentional with our words and our actions. Today, we were talking more about words. But yeah, I just love all that. You summed it up beautifully, what we were talking about today. And I just am so thankful that you’ve been such a support in this process. There have been times where I literally couldn’t figure out the technology, or couldn’t find the right guest for this, or I didn’t feel the inherent intent behind the podcast was upheld. So I changed the launch date. There were a lot of change in evolution throughout this podcast. And I just feel like you have supported me. And I’m just really grateful. And I thank you for being here with me today and sharing all of your knowledge and your insights that you have, because it’s incredible.

Sarah Kirwan:

I want to tell our listeners, if you’d like to learn more about what Jourdan is doing in this space, then please check out The Resource Key website, which you can find at www.theresourcekey.com. And Jourdan, is there anywhere else they should look for you or for The Resource Key.

Jourdan Saunders:

That would be the best starting point. If you’re on LinkedIn, that’s how Sarah and I met. I’m on there every day posting, and continuing to learn, and do the work myself to research and continue to inform myself. So yeah, theresourcekey.com is the best place to go. And I want to thank you Sarah so much for having me on and for our continued conversations that we have had, and just for being an incredible person that you are. And also doing the important work that you continue to do. I’m very appreciative of the work that you’re doing. I’m appreciative to know you, and just continuing these conversations.

Sarah Kirwan:

That was incredible. And I really appreciate you saying that. And I think that it’s kind of funny. I don’t know if I told you this, but I kind of think to myself on LinkedIn, what would Jourdan do?

Jourdan Saunders:

Overthink everything.

Sarah Kirwan:

So I look back and I’m like, “How did Jourdan alt text this? How did Jourdan post this? What hashtags did Jourdan use?” So it’s been just incredible.

Jourdan Saunders:

Yeah, it really has. I’m so glad we met.

Sarah Kirwan:

It’s been just fun. Right? It’s like for everyone out there listening, I’m trying to get my LinkedIn game up to Jourdan’s level. I’m on it. Man, it’s incredible. Yeah. We’ve had a great time. And it really has been LinkedIn. And now I feel like I just want to hug you. And I feel like I can’t wait to meet you in person.

Jourdan Saunders:

Gosh, the amazing things that virtual video calls can have. It feels like I know you and we’ve hung out. I feel like that when we do meet in person, it’s just going to pick up wherever we left off.

Sarah Kirwan:

Totally. And I can’t wait. I really can’t wait. I know that we will continue this conversation. And maybe you will come back with us and talk about words are powerful around disability justice. I would really love that. So I hope you consider that.

Jourdan Saunders:

Yeah. So I feel like words can have multiple parts.

Sarah Kirwan:

Yes, yes. And we have seen that firsthand. So I look forward to continuing the conversation.

Jourdan Saunders:

Thank you so much.

Sarah Kirwan:

And once again to our listeners, thank you for spending your time with us and joining the Incluse This! Conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC. Eye Level is a California-based woman and disability-owned small business committed to having critical conversations at eye level that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at www.eyelevel.works. You can also email me directly with any podcast episode ideas or questions and comments at [email protected]. Remember to put your disability lens on when you look at the world, and tune in next week for another stimulating conversation on Incluse This!, the podcast that’s really a movement. Take care and be well.