National Disability Radio

Paralympic medalist and World Games record holder Sandy Hanebrink joins us to talk about her journey from St. Louis to the 1996 games in Atlanta. We discuss how the treatment of Paralympic athletes has progressed and where more investment needs to be made in athletes with disabilities.

You can find Sandy at: https://www.linkedin.com/in/sandy-hanebrink-otr-l-24432029

To find out more about the Carvan for Disability Justice and Freedom: https://thedisabilitycaravan.com

Full transcript available at:

Michelle Bishop:

Oh, God. Okay. Are we ready, Jack?

Jack Rosen:

Ready as we’ll ever be.

Michelle Bishop:

Oh, that’s scary and not at all comforting. *Laughs* Okay, give me a sec.

Jack Rosen:

Today we’re sitting down with Sandy Hanebrink, who is executive director of Touch the Future. She’s a occupational therapist and has worked with the Neuro-Abilities Advisory Committee for the United Nations G3ict, which is under the Convention for the Rights of Persons with Disabilities. She’s an accessibility expert and she is also a Paralympian.

Jack Rosen:

Sandy, do you want to introduce yourself?

Sandy Hanebrink:

Hey, it’s great to be here with you guys. I think you pretty much covered it, Jack. I am Sandy Hanebrink, I am all those things he said, and I’m just happy to be here with you guys today.

Michelle Bishop:

Sandy, thank you so much. We’re excited to have you here. Actually, you have such an amazing list of credentials I’ve now thought of like five different podcast episodes we could interview you for on different topics, but this one is actually our Olympic special, so I was wondering if you could start by telling us a little bit about your history with the Paralympics and how you got involved.

Sandy Hanebrink:

So actually I got involved back in the glory days in the ’80s when rehab was kind of exploding and custom equipment and things were exploding. And I was a patient at St. Mary’s Rehab in St. Louis and was introduced to an adaptive sports program at the Jewish Community Center Association. It was an adaptive fitness program that had racquetball and whatever type that, and that was my first introduction to some of the guys who were doing disabled sports. So I learned about wheelchair basketball and wheelchair tennis and racquetball during my time in that program and started competing with the local wheelchair sports program in St. Louis, as well as playing tennis. And so I got introduced because I was invited to be part of a development team for Team USA to the Pan American Games in Venezuela. And so we competed in Venezuela as part of the Team USA and got a gold medal in wheelchair basketball. The next year I played in the U.S. Open in the Quad A division for wheelchair tennis, and I beat the guys. So I kind of caught the tennis bug. And then I started learning more about different sports and competing in different events and trying different wheelchair sports events because St. Mary’s sponsored many wheelchair sports teams. So they had people doing road races and track and field, and they had a wheelchair softball team, of course wheelchair basketball, and then tennis.

Sandy Hanebrink:

So that’s where I got my start. And then after I went to occupational therapy school, I actually moved to South Carolina where my parents were. And part of what I did while I was going to school was start a wheelchair sports program and get involved with the regional wheelchair games, the state games that were happening, which was then called the Southeastern Wheelchair Games. And that’s when I started trying different sports and did field events and competed in swimming. I went on to win the National Wheelchair Athletic Association is what it was called at the time, the female athlete of the year. Got invited out to Paralympic training camps, which at that time swimming and field were out at Sacramento State where they were doing just at the infancy… Rory Cooper, who’s at University of Pittsburgh, had just started the research into elite athleticism for Paralympians. And so part of those training camps, we were part of some of the initial studies on what form and technique and endurance and oxygen capacity of people with paralysis and different disabilities and things like that and how it impacted things. So kind of in the infancy of what is now what I call the modern Paralympics.

Sandy Hanebrink:

And then I competed in the World Games for swimming and field events and got silver medal at swimming in Worlds, continued to compete at national level. I actually still have the national records for shot put discus and javelin, and a couple of swimming events which will be forever because nationally we used to do yards and not meters, and now all Paralympic events are meters in the U.S. as well, so those will never go away. So that’s pretty exciting. And then because of my qualifying in attending the Paralympic sports camps, I made Team USA, competed in the trials, and then actually made the team for Atlanta Paralympics in ’96 for both field and swimming. But unfortunately when they restructured the games, they didn’t have all the classifications and they combined like I’m an incomplete quadriplegic, so my class was… All the quadriplegic females were lumped together with two different classes of paraplegics. So I could have done prelims, but there was no way I was going to make it to finals competing against people two classes ahead of me. So I competed in swimming and got a bronze medal at the Atlanta Paralympic Games, and then continued to compete for a while until that life thing called work happened and then started working. And then I did more with coaching, youth development programs, and wheelchair sports programs, and hosting events.

Michelle Bishop:

Sandy, first and most importantly, you’re from St. Louis? Because I’m from St. Louis, and I see now why our producer Jack did not mention that to me before we started filming this episode so that I didn’t spend the entire episode talking to you about toasted ravioli, which is-

Sandy Hanebrink:

Exactly

Michelle Bishop:

Right?

Sandy Hanebrink:

St. Louis pizza and toasted rav. You got to have it.

Michelle Bishop:

Right? We could do a whole episode on that. We should. We should do a St. Louis episode. We can go, we can record there live, and we’ll do it from an Imo’s. But sorry, all that aside, I mean congratulations. Your career sounds amazing and I can’t believe you’re an actual Olympic medalist. Like that blows my mind, and thank you just for representing our country at the Paralympics. Sorry, the Olympics make me really patriotic in a way that usually only elections can. But that’s an incredible story, just thank you for joining us. And I think Jack had another question for you.

Jack Rosen:

Sandy, so before we started this interview you were also talking about some of the challenges you faced when you were involved in the Paralympics, that they didn’t really invest in their athletes at the time. Do you want to talk about that a little and how things have changed?

Sandy Hanebrink:

Yeah, I think it’s kind of the evolution of disabled sports and Paralympic sport was back in the ’80s when you started seeing more and more countries participating in the Paralympics. You saw the rehab centers as another way to improve the quality of life of people with disabilities, sponsoring adaptive sports programs and Paralympic competitive teams. You saw leagues and stuff spreading across the country. But as an individual who’s competing back then, you were on your own to fundraise for all your equipment and training and that unless you happen to be part of one of these few wheelchair sports programs that existed out there, and they maybe had some team chairs. Or like some of my first equipment, my throwing chair actually, we made, I had a tool and die shop in town make for me.

Sandy Hanebrink:

And a lot of the equipment was evolving from where wheelchairs were now custom for every day. My first wheelchair when I first became paralyzed was an ENJ folding chair. And then by getting involved in the adaptive sports program that I talked about, I was introduced to custom chairs and sports chairs. And back then our everyday chair was also our basketball chair. Very few people had a piece of equipment for different sports, other than racing. That’s when the Eagle Sports Chairs had evolved with, at that time was still four wheel racing chairs, and just starting with the three wheel racing chairs that were much shorter and not as aerodynamic and not as much technology into it and innovations and engineering that we see today where BMW even makes custom molded wheelchairs for our Paralympic racers and stuff. But in the beginning you funded yourself, so sometimes the best athletes didn’t go, but the athletes who could fundraise or had a program backing them got to go.

Sandy Hanebrink:

When you made a national team, it’s much like Paralympics now and the Olympics where the national team coach and support staff are named. But like in gymnastics we were talking about earlier, you’ll see there’s the head coach but then you see the other coaches for the athletes are there. The athletes don’t have to just listen to the head coach that doesn’t really know them and things like that. Well when I went to Worlds with swimming, I didn’t know the coach or the team leaders and so they would make tips and stuff, but you’re kind of on your own to do your training and be prepared because you didn’t train with… The teams were named and you left, you didn’t have time to practice together and train like they do now. You had a couple weeks kind of thing. And again, it was like you had to fundraise. So I would hold fundraising events and sell t-shirts and do things like that to raise the money to be able to go to competitions and then to go to the Paralympics and that you had to buy your own uniforms and everything. There was fees and stuff, and you actually contributed to support the coaches and team leaders that you didn’t know.

Sandy Hanebrink:

Well, that changed after the Atlanta Games and the lawsuits that went through that changed to where the USOC now is the U.S. Olympic and Paralympic. And so you started seeing the evolution of more camps and stuff at the USOC and that, and now where there are resident athletes, and wheelchair athletes or other disabled athletes now are also professional athletes just like our peer Olympians. And at the last Olympics for the first time the Paralympians receive the same financial compensation for medal counts. The game sites, if a country hosts the Olympics, they have to host the Paralympics. There’s been a whole evolution because that wasn’t always the case. And then the medals and the clothes and the regalia and stuff that, even at the Atlanta Olympic Games the Paralympians we didn’t get anything that was even comparable. But now Team USA is Team USA, Olympic and Paralympian, which is a beautiful thing.

Sandy Hanebrink:

But with those changes it’s been a huge improvement for elite athletes. But with everything there’s a yin and a yang. It seems like some of the developmental programs aren’t there that were once there, and some of the state games and regional games you don’t see as many of that I’m aware of. I know in our area that there once were, and the size of the games aren’t as big. Because at the state games it was a combination of recreational, emerging and elite athletes because that’s where you learned about the different sports and you kind of learned techniques and strategies, and you learned about the national team and how to be a part of national teams. You learned about Paralympic trials and classification and all the different components that go with Paralympic sports.

Michelle Bishop:

It’s fascinating to me just how much it’s evolved from what you’ve described. It’s just the Paralympics have come so far, it’s really incredible, in a really a fairly short period of time. I mean what you’re describing was not that long ago, but it strikes me that you talked about how state and regional games seem to be on the decline, and I’m wondering if you have thoughts about how we could get more disabled youth involved in sports?

Sandy Hanebrink:

Yeah, I think it’s critical to start… We’re starting to see more and more facilities and infrastructure in place since the ADA, of course it’s been 34 years and we’re just now seeing adaptive playgrounds and access, better access to gyms and training facilities like fitness clubs, tracks, being able to park and have a route to a track and things like that. You’re seeing more and more in the media. Some of the national governing bodies are much more advanced and inclusive than others. Like local swim meets, if they’re part of U.S. Swimming, they can compete at their neighborhood swim club. Individual sports it’s easy to do, but then you’re always competing alongside your non-disabled peers, but against the clock. It’s still critical to have those competitions where you’re in a heat with people with your own classification and that.

Sandy Hanebrink:

So I think some of the change happened just with the changes in our healthcare paradigms and rehab and how long people are part of rehab facilities in order to be in that community and engaged. Certainly major rehab centers like Lakeshore Foundation is also a Paralympic training site and research center, so there’s ongoing program there. But then in my local community, we used to have wheelchair sports teams for track and field and basketball and tennis, and they kind of went away and now they’re starting to come back. It’s that wax and wane. And then when the Paralympics came under the US Olympic Paralympic, now it’s about elite sport and there’s all these feeder systems from Little League and local recreation and high school and colleges and professional races and things like that that are already in the mix for Olympians. And those individual sports like road racing, hand cycling, swimming, tennis are in that mix, but wheelchair basketball and softball and some of the team sports, sitting volleyball and that, those have to be unique leagues, right? Because those are only people with disability sports.

Sandy Hanebrink:

And so the USOC, Olympic Paralympic organization is about elite athleticism and they’re not… And they do the youth development just like they do for Olympics and that, but the people who compete in those development programs are already involved in recreational level and competitive club teams and things like that. And we just haven’t gotten there yet with Paralympics. A lot of focus was on our disabled veterans with the Paralympics because, let’s face it, we have young, strong, athletic people who thankfully were there for serving our country now with disabilities and were easy to integrate into programs. And I think the focus went there and the balance of continuing youth programming and adult community program kind of slacked off a little. Then there was a resurgence of trying to do programming and build Paralympic sports clubs, and I think some focus is there.

Sandy Hanebrink:

But really how I got involved was we said, “Hey, we don’t have this and we want to do this”. And we found, like in St. Louis, my uncle worked at Bishop DuBourg High School and they have a big parking lot. So I went to them and said, “Hey, can we paint a wheelchair softball field in your parking lot?” And that’s how we got a wheelchair softball team. In Mauldin here in South Carolina there was a Miracle League field and we got the city to make the outfield bigger so that it could accommodate wheelchair softball. And so now they just had a tournament last month that I attended to watch with teams from four different states. But the sustainability of trying to get more people into the program was what I was hearing from all of the teams, even the ones that came from rehab centers. And it’s like, “How do we get the younger people engaged?” And I think part of that’s going to have to start with it’s time for the high schools and junior high schools that have athletic teams to have them. It’s time for local rec centers to partner with the whole area in order to have the numbers they need for teams and to develop those feeder programs. And a lot of it still comes from people with disabilities just making that ask and forming the teams and keeping things going.

Stephanie Flynt McEben:

Thank you so, so much Sandy. I really appreciate. I know that we all really appreciate you discussing your lived experiences and participating in the Paralympics, and also talking about different ways that we can get today’s youth engaged in disabled sports. I know for me personally I did benefit from participating in disabled sports growing up. I was able to play soccer, I was able to participate on a swim team, and so participating in those things really does help in terms of helping with youth develop social skills and competency skills and leadership skills and various transferable skills and character development that can transfer into adulthood. And so I just wanted to know if you have any closing thoughts that you’d like to share with our listeners, any final thoughts that you have?

Sandy Hanebrink:

Yeah. I think for me I was an active athlete before I became disabled, and so being involved in disabled sports was all about what I can do, not what I can’t do. It was all about setting goals and pushing the limits and being a part of a team again. It was a way to achieve and to push things beyond what you thought you could ever do. I know like with the program we did in South Carolina, youth program… That was South Carolina and North Carolina we actually combined two states and we do some practices in South Carolina and some practices in North Carolina, and then we’d practice separately and that to make it happen. But it evolved into a Paralympic sports club. And the youth that started at four or five, six years old, some in their teens went on to college, they have families, they’re working. And when you compare it to statistically the same things that happen for youth who compete in non-disabled sports, the same benefits happen for youth in disabled sports. You develop those life skills and you’re successful and productive members of the community and you give back to the community.

Sandy Hanebrink:

And what I really love about the Paralympic movement is everybody kind of pays it forward. Like I’ve passed on my equipment to new athletes so that they could try things and get involved, other people have done that for me. People share their strategies. If my equipment broke, I’d actually had other athletes give me their equipment to use and I was competing against them. So it’s just a whole community dynamic, and to see from where we came in the ’80s where things were starting to boom with the evolution of sporting technologies, the changes in classification systems, the growth of Paralympic movement across the world to where it is today as considered equal athletes to our peer Olympians is quite amazing. The TV time, it’s part of everyday life of everyone, not just people with disabilities. Disabled athletes are recognized by the general public. It’s just the huge opportunities, and I just think it’s critical that youth sports and recreational sports for adults with disabilities be available so that we can continue to grow our teams for the Paralympics, but more importantly that we create those opportunities and those life skills for people with disabilities that should be available just like our non-disabled peers have.

Jack Rosen:

Well Sandy, thank you so much for taking the time to speak with us today. Where can the people find you? Do you have any social media or anything you’d like to promote?

Sandy Hanebrink:

Sure. Right now I’m actually part of the Caravan for Disability Freedom and Justice. So if you go to the Caravan for Disability Freedom and Justice 2024, we’re on Facebook, or The Disability Caravan. We’re traveling around the country celebrating people with disabilities, the history of people with disabilities, the resources and stuff today, and working towards the future. You can also get me at Touch the Future, we’re on Facebook. Or you can find me personally at Sandy Hanebrink on LinkedIn or Facebook tend to be the ones I’m on most. But I appreciate the opportunity and I’m just excited to be a part of it and really celebrate the growth of Disabled Sports and the Paralympic movement to where it is, this amazing competitive professional movement that it is today.

Jack Rosen:

And you can find those links in the show notes. Thank you so much for joining us today, Sandy.

Michelle Bishop:

Wow, y’all. Thanks so much to Sandy. It was really interesting hearing just how far things have come in terms of the Paralympics from where we started up through this year. And if you haven’t seen the little mascot for the Paralympics, it’s so cute. It’s that red hat that was the mascot for the Olympics, but he has a prosthetic leg. It’s super cute, you should check it out. Okay. Also, in honor of the Paralympics in Paris, Stephanie, I believe you have an on topic joke for us this month.

Stephanie Flynt McEben:

Of course I do, except it’s more of a question. And it’s something that I feel like people asked in 1982, but I wanted to know if anybody’s refrigerator is running? Get it? Because of the Olympics.

Michelle Bishop:

Oh, no.

Stephanie Flynt McEben:

Are there cricket noises that we can insert?

Michelle Bishop:

What worries me about that joke was not that I didn’t get where you were going, but that it’s an election year and I immediately took it as, “Is your refrigerator running for office?”

Stephanie Flynt McEben:

A frozen legislator? Oh, no.

Michelle Bishop:

It scares me when we’re too in sync, Stephanie, and it should scare everybody else.

Stephanie Flynt McEben:

Yeah, it’s fine. Well, hopefully you have been able to catch the end of this episode and my joke and all the things.

Michelle Bishop:

Jack, please tell the people where they can find us on social media and save us from this episode.

Jack Rosen:

As always, you can follow us on LinkedIn, Twitter, Instagram, Facebook, and Threads. And you can reach out to us at [email protected]. Untill next time folks –

Stephanie Flynt McEben:

What about TikTok?

Michelle Bishop:

She really snuck, “What about TikTok?” in there.

Jack Rosen:

Was that what you were yelling?

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

Yeah.

Amy Scherer joins us for her fourth appearance on the pod to discuss her work covering the US Olympic Gymnastics trials, and the accessibility challenges she’s faced both at the events themselves and while traveling for them.

Check out Amy’s coverage at: https://www.intlgymnast.com/

Full transcript available at: https://www.ndrn.org/resource/ndr-july24/

Stephanie Flynt:

Do I just start?

Jack Rosen:

Yeah.

Stephanie Flynt:

Yeah. Well, we’ve got to be up. Hold on, well. Aghhhhhhh. I almost fell over Nala.

*Intro Music Plays*

Jack Rosen:

All right. Well, our podcast team has been decimated by meetings and migraines and everything else. So it’s just me and Raquel here to kick us off today. Guess what, Michelle? I’m doing the intro this time. So I guess I am a host. Raquel, do you want to tell the folks who we have on today?

Raquel Rosa:

Thanks, Jack. Today we are going to be joined by Amy Scherer, one of NDRN’s dynamite attorneys. She focuses on supporting the CAP program, or the client assistance program. She’s going to be talking to us today about a recent trip she took to Minneapolis where she was fortunate enough to see the gymnastics Olympic trials. Take it away, Amy.

Amy Scherer:

Wow. Raquel, thanks for such a kind introduction and I’m really glad to be on here today to talk a little bit about my experience. As Raquel said, my day job is as a staff attorney at NDRN, focusing on CAP, or client assistance program, VR related employment issues.

And I just happen to have a little side job that is also quite fun and I feel lucky to be able to do it. Maybe something that not everybody gets to do every day, but I essentially work as a freelance writer for International Gymnast Media. It used to be International Gymnastics Magazine, but as many things have happened over the last couple of years through the pandemic and everything, it’s now essentially a website, but it is the main media that covers international gymnastics, and it’s been around since 1956. So it’s really great to be able to be a part of that organization.

And the gentleman that runs the website and was a publisher of the magazine, I actually had a chance to meet him when I was 10 years old and just started getting involved in the sport and really fell in love with the 1984 Olympics when Mary Lou Retton won for the United States and also the men’s team for the US won the gold medal there. So that was sort of my introduction to the sport, and I was able to meet Paul Ziert, the publisher, and that’s where our relationship began, which led to my ability to work there many years later. I never thought as a child that literally 40 years later I’d be working for that organization, but it all worked out that way.

And the job, it’s interesting because I don’t think it’s that common even in 2024 for members of the press to be wheelchair users or to have visible physical disabilities. So my primary job with International Gymnast is to cover the NCAA season, which is separate than the Olympic season. These are individuals obviously who are in college, have scholarships, and there’s an entire NCAA season just like there would be for football or basketball. And I typically write a column during the season each week and then get a chance to go to attend the NCAA national championship at the end of the year. So that’s a live event, and involves going to the competition and writing about it while it’s happening, so similar to live chat, and then also going to press conferences after that.

So when I first started doing this, which was probably back in 2016 when I started to do the formal coverage of NCAA, they didn’t even have a place for a person in wheelchair to sit in the press section. There were actually five steps up there to even get to the platform where the media was sitting. And so here I just sat in another section and was not able to be with everyone else who was reporting on the competition. But actually, and I have to give credit to my friend Jessica Obern, who was there, and she was even more incensed than I was about what had happened. And she wrote a scathing letter to the head of the media for NCAA gymnastics and just said it was inappropriate and that it needed to be set up differently in order for me to be able to participate.

And lo and behold, they did respond to that very well. The next year there was actually a section on the press application that said, “Do you need wheelchair seating? Check this box.” And they really worked with me from that point on to try to make sure that I had a good place to sit and that I could see well and reach the table and reach the laptop and everything that was involved in reporting on that competition.

So it went well for a number of years. I have to say last year there was a change in the leadership so I wasn’t working with the same person. And even though there were many, many emails exchanged in the months prior to this year’s competition in terms of what I needed in order to be able to see and to be able to reach the table and everything, I got there and the table was about 15 feet tall and I was not able to see over the row of people in front of me.

So obviously that was a major issue, and it became a pretty significant thing because we found out about it just a couple hours before the competition. So we were trying to figure out what to do, and I was pretty frustrated because it’s not like this was a surprise. There were lots of conversations about it. The guy who was just in charge did not seemingly have the power to make the changes that needed to be made, and they were extremely apologetic, but obviously that didn’t really impact me to do my job and to do what I needed to do.

So after some chaos and people running around, we were able to find a place for me where I could see the competition and do what I needed to do in terms of my job responsibilities. I do have to say that once I said that I was a staff attorney at the National Disability Rights Network and that I had knowledge about the ADA, that definitely got things moving a bit more. So tip to anyone listening, if you can drop that into a situation like this pretty quickly, that does tend to wake people up. But that’s the situation in terms of doing the job with the press.

I’ve just also been extremely happy, though, with the organization that I work with, International Gymnast Media. They never thought it was a big deal that I use a wheelchair, had never done gymnastics in my life, couldn’t tell you how to do a back handspring from a technical standpoint at all. But they just appreciated I guess my passion for the sport and my desire to learn more. And I was excited to be able to find a way to use the knowledge that I had in a productive way and to be able to put it to use. Rather than just sitting at home and watching videos on TV, what could I actually do that might contribute to the sport? And they just totally embraced that.

And again, this is starting back in the early nineties, so not something that was necessarily typical. Never really had any specific discussions with them about accommodations or anything specifically related to my disability. We just made it work. And I think it was a good example, too, of for a while there, most of the interaction I had was through email or through the phone, but then when we started to be able to meet at different competitions, spend more time together, have meals together, I think they got a better view of what my disability was and that there were more things to be considered beyond just the fact that I use a wheelchair.

My motor coordination is also somewhat limited, and so that affects typing, which was part of the job that I was doing. But again, as I got to know them better, that just all kind of happened naturally and it was never a big deal to figure out how to make it work. So I just think that’s a great example because sometimes people think when you request accommodations it has to be this really formal, adversarial thing, and sometimes that is needed, but other times, especially when it’s just more of a side job like this, it just happened more naturally as I got to know them and we just figured out what was going to work best for me. So I think that’s probably the end of the job part of the discussion.

Did anybody have, so the second part would be, again, the most recent trip, as Raquel mentioned, to the Olympic trials for gymnastics in Minneapolis, Minnesota. And I am not able to travel independently, so I was lucky enough to bring along Raquel, who was travel assistant extraordinaire. And we had never traveled together so I think it was a learning experience in a lot of ways for both of us, but it also just showed that things don’t always go as smoothly as you hope they’re going to.

One thing is I use a power chair most of the time in my day-to-day life and then [inaudible 00:10:20], but I have never taken a power chair on an airplane for a trip because there’s just so many variables there. And if one thing gets broken, then you get to the other end to start your trip when you land and you don’t have a working mobility device. So it does definitely make it easier or less likely for a chair to be broken if you have a manual chair, especially if you take all the pieces off of the chair, which is what I would recommend. So I’m assuming most people listening to this probably know this already, but you would want to take off the back cushions, the seat cushions, the footrest, basically anything that is detachable from the chair, I recommend that you take off and hopefully are able to put that into the overhead compartment for the plane.

That doesn’t guarantee that nothing’s going to get broken, because I did have a trip last year where all that was done and they broke the brakes on the chair, which might seem like a minor issue, but it really wasn’t minor in any way, shape, or form because since I couldn’t put the brakes on to keep the chair from moving, I couldn’t do a transfer independently. So it really did make the chair useless until they were able to fix the brakes, which took a couple of months in order for that to happen. So it really can be a huge issue when they damage the chair.

In this case, though, we did not have chair damage, so I was very happy that we made it to Minneapolis in one piece, but there were some major issues in terms of getting on the plane. Typically, if you need assistance as a result of a disability to get on the plane, you could indicate that on the plane reservation and say that you need help with transferring in order to get onto the seat.

And in most cases, there’s an aisle chair, which is a more narrow chair that is the width of the airplane aisle. So that allows a person who’s not able to walk to get to the seat of the airplane. And so that involves a couple of different transfers, though. You need to be able to get from your own personal wheelchair onto the aisle chair and then from the aisle chair onto the airplane seat. And all this was very well spelled out in the reservation, that I was going to need help to do that, and specifically that I would need lift assistance from the aisle chair, well, from my chair to the aisle chair and from the aisle chair to the seat.

But when Raquel and I got there, instead of having two people, which would be the standard procedure if you’re going to help do a lift assist onto a seat, there was only one person. And so they were basically asking me if I could help or basically independently do the transfers without lift assistance and I basically was like, “No, that’s really not going to be possible.” And Raquel stepped in and said, “I’ll be glad to help since there’s not [inaudible 00:13:29] here.” And so she assisted with that and helped me to safely and comfortably get onto the aisle chair and into the airplane.

But I still look back at that and I’m not sure what would’ve happened if Raquel had not been there. I may still be sitting on the aisle seat or the aisle chair. They clearly did not have a plan B, even though I had indicated that that was the type of assistance that was going to be needed. Raquel, did you want to add anything about that, or anything I missed?

Raquel Rosa:

No, I think you said everything exactly correctly. I think if I could just give advice out there, it’s when we’re supporting people physically, that even if we know them, especially if we don’t know them, but if we know them, no matter what, we should be asking people, “May I do this? Can you do that? Can we do this?”

So when Amy and I were together, and I think the airplane transfer was a really good illustration of that, there are a number of buckles and harnesses and everything attached to that aisle chair. So it’s, “Amy, may I put this around your legs? May I put this around your chest?” Or in taking it off, “May I unbuckle this? Can you put your arms around my neck and I will hold you underneath your knees so that I can support you in the transfer?”

I think that communication is critical not only for safety but also just for permission and consent. I don’t think anybody likes to be touched without knowing or without being okay with it. And so that’s something that I am very firmly an advocate of. And so I think Amy and I had a really good exchange when we were together, and I think that’s a really good example of where that communication was loud and clear.

Amy Scherer:

I think that’s such an excellent point. I’m so glad that you said that. And to that end, too, it happened on both ends of travel. So both when we were going DC to Minneapolis and then Minneapolis back to DC, there were issues with the transfers on the plane. Same issue in both, with not having the correct setup to provide the assistance that I requested and Raquel having to step in there.

And as she said, it did get quite uncomfortable on the second leg of the trip with the gentleman that was trying to attach the seat belts so that I would not fall out of the aisle chair, which is kind of an easy thing to do if you don’t have a lot of stable balance abilities, because the chair is so narrow there aren’t armrests. And so in a lot of ways the only thing that in my case was probably keeping me from falling over or out of the chair were the seat belts.

But to Raquel’s point, the gentleman was not very clear about what he was doing or where the seat belts were going to go, and I was just trying to make sure that I didn’t fall out of the chair. So it was kind of an uncomfortable exchange and not at all what Raquel was suggesting that happened. And I would say that’s the case even in any situation, not just the airlines, but even Raquel and I knew each other, we were friends, but we had never done, as I said before, a travel experience like this. So it was really important for me to hopefully communicate to her what I needed or what was going to be difficult or what was going to work or not work. And anybody who’s in that situation, even if it’s a person that you’re hiring as a personal care attendant that you really don’t know or that you haven’t developed a relationship with, I think communication about what is needed is such an important part of the whole thing.

So with that, the other major issue we had, it was a great hotel overall, and they had really good customer service. We had a really good experience with the hotel staff, the restaurant staff, even the bartender at the bar that we went to several times got to know us and knew we were coming and everything like that. But there was one major hotel issue, and that was with the hotel bathroom. And it was a roll in shower, which is what I typically request because the transfers to the tub onto the shower chair are much more difficult. I was really glad that the roll in shower was available, because again, sometimes that can happen too. You request a roll in shower and you get there and all they have is a tub. And that’s not necessarily, depending upon what your physical capabilities are, an easy transition to make.

But in this case, didn’t have to worry about that. We had the roll in shower, and it was really a great setup in a lot of ways, a nice big space, a nice threshold on the shower so that the water didn’t go everywhere, which can happen with a roll in shower setup. However, there were grab bars on the walls of the shower, which is fantastic, and there was a shower bench attached to the wall, which is also usually really good because that way it’s solid and stable and it’s not going to move and you know that it’s going to be there. You don’t have to sit there and request and hope that they bring a shower chair that you can sit on.

But where the shower bench was was not at all close to any of the grab bars that were on the wall. And initially Raquel and I looked at that and we were like, how could that be? How is that possible? They’re assuming that you’re going to be able to stand up from your chair and then sit on the bench without having to hold onto anything because there wasn’t anything to hold onto. So we were pretty perplexed, and we knew that that wasn’t going to be easy for me, to just go from the chair to the bench without any additional support, and we didn’t want to end up on the floor of the shower, so we had to really be creative and figure out a way to do it without having to do the transfer.

And we got really creative. I’ve never really tried to do it this way, but we decided that it was probably better if I just stayed in my chair rather than trying to transfer. Now, obviously a manual wheelchair is not designed to be prepared for a full shower. They actually have shower wheelchairs that are designed for that, but it was a situation we were in, so we had to make it work. We ended up taking everything off of the chair. Again, didn’t have a back support, didn’t have a cushion that I was sitting on. We just put a towel down, but we were trying to make sure that nothing that would be damaged by getting wet was on the chair. So basically took everything off that we possibly could and did it that way. Just literally rolled my chair into the shower because there was no way to get onto the bench.

And it worked. It definitely worked. It worked better than I think we thought it would, and everything did dry pretty quickly, so there was no damage done to the chair. But honestly, we should never really have been in that situation of having to make that decision because all they needed to do was have a grab bar on the wall nearest the bench and everything would’ve worked much better.

But that’s been my experience with hotel rooms in general. Even when you say accessible hotel room, request roll in shower, the setups are all very different. They may be specifically meeting the letter of the law, but clearly not looking at would this work from a functional standpoint if you’re not able to stand up or transfer independently. And so I would just throw that out there for those that might not know that. And I think that pretty much encapsulates the experience that I wanted to share, unless there are other questions or comments from Raquel.

Raquel Rosa:

I think the only thing I would add is the height of the bed and the fact that there’s only one bed. So it’s a good thing Amy and I are friends because we had a slumber party.

Amy Scherer:

Very true. And I think unfortunately that does seem, and didn’t mean to, definitely jump back in there, Raquel, if you want, but I think that has been pretty indicative of my experience. As soon as you request a wheelchair accessible hotel room, nine times out of 10, it is a one bed situation. And I’ve always found that really interesting because logically it would seem that maybe if you had a wheelchair accessible room, maybe you would have somebody with you that would be providing assistance and you are not necessarily romantically involved with that person.

So it is kind of that one bed does seem to be the standard and the beds do tend to be very high. I’m actually under five feet tall, so that creates a major issue for me. And it was a trend that didn’t really exist I’d say until about maybe 10 years ago, and then all of a sudden the hotel beds got much higher just across the board. So from a disability perspective, that may help some people because then they don’t have to try to get up from a lower position. But higher beds can also be a problem.

Raquel Rosa:

I think also with the height of the bed, so we were able to make it work, but just thinking about other folks who might need a portable Hoyer or something, some other physical transferring device, the width between the bed and the wall is typically not conducive to any of that. So I know we don’t have our hotel friends and architects listening to this, although they should be. I would really encourage folks to engage people with disabilities in assessing their proposed rooms when they are sketching them out and that they actually navigate the space when there’s a mock-up of the space being built.

It’s just, like I said, Amy and I were able to make it work. I’ve done lots of travel with lots of people with varying disabilities, and so I’m used to this, but I would also say that even with being used to it, you never know what you’re going to encounter on the other side of the door. So I think it’s just really important that we are vocal about what the needs are and how those things could be remedied and that we are also very careful with our bodies and the bodies of the people who we are supporting because nobody needs to get hurt.

Amy Scherer:

I couldn’t have said that any better, but I think that might be it as far as our story.

Jack Rosen:

And we’d like to congratulate Amy on being the most frequent guest on National Disability Radio. This is appearance number four. So thank you, Amy, for joining us throughout the years.

Amy Scherer:

Thank you. I’m really glad to join, and if there’s ever anything I can do to help in the future, I’ll be glad to come back.

Stephanie Flynt:

Amy, one more appearance and we can induct you into the Five Timers Club, like SNL.

Amy Scherer:

Wow, that would be amazing.

Stephanie Flynt:

Jack, you know how we’ve been having office temperature issues?

Jack Rosen:

Yeah.

Stephanie Flynt:

So when it gets cold in the winter time, you might need to be careful about leaving your windows open because you might end up freezing your computer. Windows open. Freezing. That was probably terrible. I’m like, maybe we should do an encore joke. That was pretty bad. That was the worst joke ever. I can’t believe Michelle was not here to … Like, get it? Windows, freezing, computer.

Jack Rosen:

Thank you, Stephanie. Until next time, you can email us at [email protected]. You can follow us on LinkedIn, Twitter, Threads, Facebook, and Instagram,

Raquel Rosa:

And keep your computers warm, guys. Keep those windows closed.

*Outro Music Plays*

A summer heat wave can’t stop our intrepid podcasters. In this episode, the gang (well Michelle and Jack) goes abroad! From Brussels, Michelle interviews Alejandro Moledo, the Deputy Director and Head of Policy of the European Disability Forum. Then, Jack conducts our spotlight interview from a hotel lobby in Spain, where he speaks with Mercedes Lopez Miranda about her experiences being a person with a disability in Europe.

To learn more about the work the European Disability Forum does visit https://www.edf-feph.org/

To view the full transcript for this episode visit https://www.ndrn.org/resource/ndr-june24/

Stephanie Flynt:

What’s your cold open going to be about?

Michelle Bishop:

It’s probably going to be that now.

Jack Rosen:

Probably that. I don’t know. I’m tired.

Michelle Bishop:

Jack, I’ve never seen you so full of life and vivacious.

Jack Rosen:

Yeah, I don’t know. It’s too hot out to podcast.

Michelle Bishop:

Too hot to pod?

Hey, hey, welcome back to National Disability Radio. It is a little bit hot in D.C. right now and we are all a little bit blah, but I am one of your hosts, Michelle Bishop, the voter access and engagement manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt McEben, public policy analyst at NDRN, and please send coffee gift cards if you feel so inclined. You’ve got our little electronic email address. Okay, thanks.

Raquel Rosa:

And this is Raquel Rosa, your community relations specialist at NDRN and your final third of podcast hostesses.

Michelle Bishop:

Hey, Stephanie is fueled entirely by coffees. You know how most people are 75% water or whatever? Stephanie is 75% iced coffee.

Stephanie Flynt:

I am, yes. And I almost hate to say this because if people find out there might be a supply shortage, but they sell iced coffee in cartons and I was last summer years old when I found that out and it’s been life-changing.

Michelle Bishop:

You drink cartons of coffee?

Stephanie Flynt:

They have iced coffee cartons, like half gallons.

Michelle Bishop:

You’re telling me you drink a half gallon of coffee on a daily basis?

Stephanie Flynt:

Not a daily basis.

Michelle Bishop:

That’s a little scary.

Stephanie Flynt:

Not on a daily basis.

Michelle Bishop:

Speaking of people who are energized and ready to go, where is our producer at?

Jack Rosen:

Oh, I was sending an email asking them to turn up the AC. Hi, producer Jack Rosen here. That’s all I got. I’m genuinely miserable right now.

Michelle Bishop:

This is an enthusiastic episode we have for you all.

Stephanie Flynt:

Very enthusiastic.

Jack Rosen:

Yes. To be clear, I’m miserable about the heat, but I’m excited for our guests on today’s episode. Michelle, you want to tell the people who we have on?

Michelle Bishop:

So I recently had the honor of traveling to Brussels, the home of the European Union, to bring you our very first international episode. We don’t have applause, so now we have to start doing it ourselves. I actually got to visit the European Disability Forum, or EDF. They’re an umbrella organization of persons with disabilities that defend the interest of over 100 million people with disabilities in Europe. As an independent nongovernmental organization that brings together representative organizations of persons with disabilities from across Europe, they’re run by people with disabilities and their families and they’re proud to be a strong united voice of persons with disabilities in Europe. EDF envisions a Europe where persons with disabilities are fully included in society on an equal basis with others. Does that sound familiar? They work to ensure full inclusion in society of persons with disabilities and access to their human rights through active involvement in policy development and implementation and monitoring of the UN Convention on the rights of persons with disabilities in Europe.

Stephanie Flynt:

That’s cool. Oh my goodness. Excited about the interview coming up next that you’re conducting, Michelle. Is that correct?

Michelle Bishop:

Are you all jealous? Are you so jealous?

Stephanie Flynt:

I am jealous, yes. I’ve never been abroad before, so I’m definitely jealous.

Michelle Bishop:

Whoa. We’re going to have to do a second international episode and take Stephanie abroad.

Stephanie Flynt:

Yes.

Michelle Bishop:

I’m in favor. Also, you should be jealous. It was in Brussels, the waffles alone and the fries were worth it.

Stephanie Flynt:

Oh my gosh. Now I want french fries. Thanks.

Michelle Bishop:

I went over to EDF’s offices and I got to meet with Alejandro Moledo, who’s the deputy director and head of policy. Alejandro leads and coordinates EDF’s advocacy and policy work at the EU level and supports the work of the European Parliament Disability Intergroup. Among other areas, Alejandro has developed policy positions and recommendations regarding political participation of persons with disabilities, accessible information and communication technologies, assistive technologies, and different standardization activities. He previously worked as a communication officer within the Parliament of the Valencia region as a journalist in digital media and a communication agency in Andorra and in a public affairs company in Madrid. He actually has an MA in political and corporate communication from the University of Navarra, Spain and George Washington University, and a BA in journalism from the University of Valencia with a year actually at York University in Canada. And I will warn you guys in advance that Alejandro and I had started having a really broad conversation about disability rights in US and in Europe, but they’re having elections coming up too and as soon as we got into elections, it got election geeky real fast.

Stephanie Flynt:

I’m here for it.

Michelle Bishop:

Alejandro, thank you so much for sitting down with me today. I just got into Brussels this morning, but I was so excited to sit down and have this conversation with you. Most of our listeners are American. They know a lot about disability rights in the states, but I don’t know if they know that much about the European Disability Forum, and I was wondering if you could start off by just telling us a little bit, a bit about that and what you do.

Alejandro Moledo:

Sure, thank you. Thank you so much for having me in your podcast. So the European Disability Forum is an organization that brings together the European disability movement. We are an umbrella organization and our members are those European NGOs that represent different disability groups such as the European Blind Union, the European Union of the Deaf, Autism Europe, Inclusion Europe, people with intellectual disabilities, and also those organizations at national level that represent the disability community. And we work very closely with the European Union institutions, as we are an advocacy organization that promotes the rights of persons with disabilities, and we do so by involving all our members in the policy-making and trying to influence the laws that are being adopted at EU level. And on top of that, we obviously work with our members in building the capacity of the movement and promoting the rights of persons with disabilities. So that would be more or less we do.

Michelle Bishop:

So we’re actually not that different. I’m with the National Disability Rights Network in the States and we are a national membership association, so I’m based in D.C. but our member organizations, the disability rights organizations are in every US state and territory, and we’re sort of their association that supports the work that they do and we work on policy at the national level. So we’re actually not that different. In the United States, we rely so much on the Americans with Disabilities Act. For the rights of people with disabilities, to protect their rights, it’s such a big landmark piece of civil rights legislation. There’s so much stuff in it, good stuff. There’s architectural access stuff, that places of public accommodation have to be accessible, but it’s also got non-discrimination and employment and access to programs and all those sorts of things. I’m wondering what that looks like in Europe. How are the rights of people with disabilities protected?

Alejandro Moledo:

Well, in Europe, finally we have the UN Convention on the rights of persons with disabilities ratified by all member states, and not only by all member states, but also by the European Union as a supranational organization. So this kind of universal ratification of the convention for us has been really a driving force for disability rights. And the thing is that, and you know very well, the convention was very much inspired by the Americans Disabilities Act and also from Europe, we also look at your good practices and good legislation also as a food for thought or inspiration for campaigns and advocacy that we do here in Europe. But when it comes to specific policies, which I guess is similar to within the US, but it’s complicated because we have the EU as having certain competencies in which the EU basically is the ruler, such as, for example, internal market. We have a single market in the EU and therefore, for example, laws concerning accessibility can be introduced and have been introduced by the European Union, transport services as well.

But then when it comes to other areas such as let’s say employment policies, education, in this case the member state has the competence and the EU has a supportive kind of role. And in this supportive role, obviously we also have certain room for improvements and ideas that can guarantee that member state exchange these good practices and can advance on the rights of persons with disabilities in different areas. So we work with this kind of complex policy system, but with the idea that every right that we have been achieving at EU level will come even if it will take time at national level, regional level, and local level in the coming years. EDF was created in 1996, and in 1997 the Amsterdam Treaty of the EU finally included disability in the article on non-discrimination and since then, we’ve seen how the EU has increasingly become more present in the everyday life of all citizens, but also on persons with disabilities. So we work with that scenario and trying to get the best out of it.

Michelle Bishop:

That’s really fascinating to me and I bet it is for a lot of our listeners because it sounds really similar to the United States in that we do have some overarching federal policy especially that protects the rates of people with disabilities, but we’re very much founded in this notion of states’ rights and the states having a lot of independence. And one of the things we often lament is what it looks like to be a person with a disability can often depend on where you live in the United States. The policies and the programs can look very different. How does that work here? Do the nations that are part of the European Union work together well on these issues? Is it complex? What does that look like in terms of someone who’s looking at policy around the European Union every day?

Alejandro Moledo:

Well, it really depends on the country and it really depends on the policy area that we are talking about. We often get the question like which is the best EU member state when it comes to the rights of persons with disabilities? And that’s an impossible question to answer because it really depends on how the country has transposed certain EU legislation because when we adopt, for example, a European directive, then member states have certain room for interpretation, particularly on how they want to fulfill the obligations of such European law. In this possibility, obviously from EDF, we prepare toolkits, guiding materials for our members to take this opportunity to advance on the rights of persons with disabilities. I’ll give you an example. Well, recently, back in 2019, we had the first ever horizontal legislation on accessibility, the European Accessibility Act, very important for accessibility in Europe.

Finally, we kind of catch up with the US when it comes to accessibility. And in this legislation we made sure that the European emergency number, which in our case is the 112, will become accessible for persons with disabilities. But it does not include national emergency numbers or other national numbers which are of interest and importance for persons with disabilities as well, so in our toolkit, in our guidance to our members, we recommended, “When you engage in discussions with your government, make sure to propose that in the national law, you also include the national emergency numbers.” That is how we can advance on accessibility, taking the European Union as a basis and then going forward and beyond. So the member states do cooperate well when it comes to certain areas, accessibility is the one that I just mentioned that I think is a good example.

In other cases, it really depends on the system they have in place. Because we have different social protection system and different, for example, with voting rights, which I guess we will talk in a minute, it’s very different across member states. So when countries do have similarities, they use a good space to share those good practices. And we do so at the disability community level, but also promoting that the EU ensure this kind of space for member states to discuss. We have the European Disability Strategy, and one of the flagship initiative of the strategy has been the creation of an expert group called the Disability Platform in which EDF and many of our members are there as civil society members. But also the CRPD, the convention of focal points of the EU and all member states. So this is a good forum for them to exchange on different policy areas and for us also to intervene and have our say on the different discussions and the different actions that this strategy was promising.

Michelle Bishop:

Okay. You mentioned voting rights and my face automatically lit up. As you know, back in the states, voting rights is my thing. I work on protecting and expanding all-site access to the vote for people with disabilities because our electoral process unfortunately is not yet fully accessible. We’re working on it. We have good federal law in place, actually. The Help America Vote Act of 2002 and the Americans with Disabilities Act actually applies, so we’re working on it. We’re getting there. I know there’s elections coming up in Europe as well because we’re about to go into a presidential election. It’s charging at us at full speed. There’s primaries going on as we record. So talk to me about elections in Europe and what that looks like for people with disabilities.

Alejandro Moledo:

Well, this is also a policy campaign that excites me very much and I’m also working very intensively on. In Europe, as I mentioned, we have many different voting systems, first of all, so the different voting tradition makes it difficult for having a homogeneous or kind of harmonized similar way of voting in all of the EU. We have certain member states in which we have closed lists, so basically the voter just picks a ballot and that’s it. We have many member states in which voters can cast a preferential vote. And we have for example, one member state, Estonia, in which voters can vote as an alternative means of voting by internet through our website, which is accessible by the way, and our members love it. And so the EU itself, as you know, the democratic institution that we have is the European Parliament. This is the one that represents European citizens.

Then the European Commission would be our government, and then the Council of the EU is institution that represents our national governments. But we do not elect the president of the European Commission or the commissioner, which would be the ministers, or the representatives in the council because these are the ministers at national level, so people elect them through their national elections. So the one that we elect directly as citizens is the European Parliament, and here the European Union has its law back in 1976. And obviously this was before the ratification, even before the drafting of The UN Convention on the Rights of Persons with Disabilities, and it includes very minimum set of rules. So we can say even if we talk about the European elections, we have actually de facto 27 different elections. And within this very diverse system in Europe, we use this kind of motto like united in diversity because even if we are very diverse, we elect the European Parliament. This poses challenges for the participation of persons with disabilities in political life.

And here at EDF, we published back in 2022 a research report. Every year we publish this series of human rights report, and that year in 2022 was the human rights report on political participation in which we kind of big dig deeper into the political or electoral rights of persons with disabilities and we make maps comparing the situation and data comparing the situation across the 27 member states. And we brought cases that really brought substantial change at national level, so I recommend your listeners to take a look at this report, which is really, really interesting. And the good thing is that it is getting outdated, which is great because that means that there is progress. I will tell you in a moment.

So in this report, we kind of divided the barriers into the legal barriers and the practical barriers because still today, there are 12 member states in which mostly people with intellectual and psychosocial disabilities that are under certain substituted decision-making regime like legal guardianship, for example, which are totally or partially incapacitated can be deprived of the right to vote. Among these 12 member states in which people with disabilities can be deprived the right to vote, in six of them if you are placed under total partial guardianship, you automatically lose your voting rights and obviously your rights to stand as candidate. And fortunately, we’ve seen progress.

Some months ago we got Slovenia changing their national law, and for the first time people placed under their guardianship will vote in the upcoming European elections in June. Last year, we had Luxembourg also changing their laws and ensuring that all persons with disabilities without exception can vote and stand as candidate to the European Parliament. So now all in all, we have 15 member states that uphold the right to vote for persons with disabilities without exception. However, if you look at the right to stand as candidate, the funny thing is that this number is lower. So instead of 15, we have only 10 countries that uphold the right to stand for office, and this still keeps alive this unfortunate double standard for persons with disabilities.

We cannot be active and political citizens, and we hope that member states will continue changing their national laws at these remaining 12 countries. From the European Union along with the European Parliament, we have proposed a new electoral law that ensures the right to vote regardless of legal capacity. But unfortunately the electoral law is a competence of the council, so the institution that I referred before, the one that represents our national government, and they are not really willing to have a new EU electoral law. Not because of the disability provisions in this law, but also because of other controversial aspects that member states are not willing to accept because elections are very sensitive and some of them, they don’t want Brussels to tell them how they arrange their elections.

Michelle Bishop:

That is shockingly similar to how we do the work in the states where elections are. Very few of our election laws are federal laws. Most of them are state laws and a lot of the policies are even set at the county level within the states. They’re very local and they absolutely do not want to be told how to run their elections, and they all do it a little bit differently. We also are working on this issue of people with disabilities losing the right to vote under guardianship. The majority of states in the US have some sort of policy in place where that can happen. In a number of them, a determination has to be made by the judge as to whether or not the person will lose the right to vote, but we do also have some states that automatically remove the right to vote based on guardianship.

So if you’re interested I can send you, the US Department of Justice just updated their guidance recently on the Americans with Disabilities Act, and it says in there explicitly that you cannot categorically disenfranchise voters with disabilities based on guardianship. And that’s I think the first time we’ve had something that strong in writing that talks about the fact that you can’t just automatically remove a right to vote from a person with disability based on guardianship, so we’re excited about that. I’m really interested in this report. Did you say our listeners can snag it online if they want to take a look?

Alejandro Moledo:

Yeah, definitely. If you just look for EDF Human Rights Report, political participation, you’ll find it. We have it in accessible format, ebook format as well. And we are updating the web page with the recent changes that we are aware of at national level because the report, unfortunately we cannot change it, but it’s really good because there is nothing like naming and shaming or comparing neighbors. So in Europe, when we have these maps with different colors, then suddenly I received an email from a national official telling us like, “Hey, please, we just changed the law. Can you change the color of our country in your report?” “Sorry, it’s in PDF. We can’t do that.” But we are making these kind of updates in the website of EDF. The European Commission made a recommendation in which they also recommended, so it’s not a binding document, but the commission can issue recommendations to member states, and the commission issued that recommendation proposing or suggesting to member state to remove the automatic deprivation of voting rights.

But they added, “Without redress mechanism or individual assessment,” something like that. So basically what they were saying is that it is bad to have this automatic deprivation voting rights, but you can have it on an individual basis. And from our perspective, the UN Convention on the Rights of Persons with Disabilities is very clear, everyone should have the same electoral rights. So we felt that the commission, it was not so ambitious or as ambitious as we would have liked to be. And also concerning the elections, the commission issued at the same time or a week before, I believe, a guide on inclusive electoral practices for persons with disabilities, which is very interesting because it brings specific cases and annexes in which you can look at different methods that the member states have put in place to ensure accessibility of the elections.

Many of them were, I must say, also taken from our report, which is great because that means that the commission is also looking at paying attention the inputs that we send them. And we cooperate very well with them because these are what we were just discussing, is the legal barriers. So people with disabilities that cannot simply cannot enjoy their political rights, but many more or millions I would say do not engage in the elections because of different practical barriers. And here when it comes accessibility, here when it comes reasonable accommodation, the right to choose to freely choose your personal assistant to assist you in casting the vote, which in two member states this is not possible. In two member states, you can only be assisted by an election official, which is really explicitly contradicting the UN Convention because you basically need to reveal your vote to a stranger.

And this obviously can be very detrimental in small and big communities, there is no difference. Everyone should have the right to freely choose the assistants to cast their vote. And when it comes to accessibility, this guide or our report can be a good source of inspiration because we have so many ways of voting in Europe. So I mentioned we have the internet voting in Estonia. In Belgium and I think in Bulgaria, we have voting machines which are not accessible. In countries in which there is a closed lid, have different ways of making it accessible like braille envelopes. There is countries in which you even need to hand write the name of the candidate, which is obviously posing many difficulties for persons with disabilities. There is a country, Romania, in which you need to vote with a specific booklet and using stamps.

So there are really a huge diversity of voting cultures in Europe, but what is really interesting of our report and this guide is that it shows that when electoral authorities cooperate with disability organizations, they find solutions. And we’ve seen that, for example, in the Netherlands, in Sweden, in Luxembourg, for example, when electoral authorities sit down with our members and with specific OPDs representing the disability groups and say, “Okay, how we vote here? Okay, we vote like this. How we can maximize accessibility of these specific ballot paper that we use. Okay, maybe we can enlarge the font size. Okay, maybe we can include pictograms. Maybe we can have a QR code that could assist blind people to get the information in an accessible web document.” So there are different solutions, and I think the key message from our report was that the cooperation between electoral authorities and the disability community is crucial to really remove these barriers for electoral rights. Sorry, I get too excited with this.

Michelle Bishop:

You and I both get too excited talking about voting and elections. I don’t know if they knew what they were getting into when they paired us together for this episode. But you brought up something I’m also really passionate about, that in the US you do have the right to the assistant of your choice, and that is protected by federal law. And I just think that’s a really important feature of elections because you should be able to get an election worker to assist you if you don’t have someone, but you should be able to ask someone that you trust to mark your ballot in the way that you want it marked, and you shouldn’t have to disclose that information to a stranger or to someone to whom you don’t have that trust relationship. But I’m really excited to dive into this report.

I love this idea of these maps and maybe generating some healthy competition among the different countries. I’d love to do that with the states in the US. We might steal that idea from you all. We’ll absolutely give you credit if we take it. I don’t want to take up too much of your day. I just want to say thank you so much for sitting down with me today. This was really interesting. It surprised me actually how many issues we had in common and how many things that we’re working on that you’re working on as well. It strikes me that the disability rights movement as a civil and human rights movement is just truly global, and we’re facing a lot of the same struggles all over the world and that’s hard, but also encouraging at the same time. We’re very much all in this together. Thank you so much for talking this afternoon.

Alejandro Moledo:

Thank you to you. Thank you very much. We should also work together.

Michelle Bishop:

Yes, absolutely. Let’s keep this going. I’m going to get you in touch with our public policy folks immediately. Thank you.

Alejandro Moledo:

Thank you.

Jack Rosen:

And actually, I have a surprise guest. I’m recording here from Spain and today I am speaking to Mercedes Lopez Miranda, who has spinal muscular atrophy, and she’s going to talk a little bit about what it’s like being a person with a disability and a wheelchair user in Spain. So Mercedes, do you want to tell us a little bit about what it’s like to be a person with a disability in Europe?

Mercedes Lopez Miranda:

Hi. First of all, I am from Venezuela and I am living in Spain like seven years old. Living in Madrid with a disability is really nice because almost every building has accessibility and the public transport is really good, but it has the exceptions like the Renfe. That is a train that doesn’t have any accessibility for wheelchair users, and also the streets sometimes are kind of hard to transit because they are super old cities to change, and that’s difficult. But almost everything works fine.

Jack Rosen:

One thing you mentioned to me before we started recording was that if you need home modifications, that happens through the government. We have something a little similar in the US for people who get Medicare and certain other services, but do you want to talk about that a little?

Mercedes Lopez Miranda:

Once a year, they open a free time where you submit a bunch of papers to adapt your home for your disability or the entrance of the building. So we’re doing that with our bathroom. We’re waiting a response for that, so that’s nice. We don’t have that in Venezuela.

Jack Rosen:

I guess what are some areas where you think Europe could do better in terms of access?

Mercedes Lopez Miranda:

Well, a lot of stores have super big steps to go there and the work area, sometimes it’s super hard to get because companies, even though they have a benefit for people with disability, they don’t hire you. I don’t know why. And then they don’t allow you to work remotely. So that’s the part that I think that they can improve.

Jack Rosen:

So you mentioned one of the challenges is employment and finding remote work. Do you want to talk a little bit about how that works over here and some of the challenges?

Mercedes Lopez Miranda:

Well, in my experience, I have I don’t remember how many interviews, but at least 50. And I get to the last one and they tell me that I can’t work from home, even though I can do my work from home, because I’m a graphic designer and video editor, and they don’t give me a reason why they don’t want to help me to work from home. So that’s one of the biggest challenges that I’ve been getting here in Madrid. So I don’t understand that part, the reason why I can’t work from home even though I can.

Jack Rosen:

Okay. I’m just going to say as aside, if the answer to this question is, “I don’t know,” that’s fine. Is there I guess anything you’ve seen in Europe that you think is something that I guess we could do better in the US?

Mercedes Lopez Miranda:

Well, I don’t know because I’ve been in the United States, and for me, everything is super accessible. So I think it’s in the reverse way, the European people needs to learn from America.

Jack Rosen:

Hey, we’re getting something right. Let’s celebrate that. Thank you so much, Mercedes, for taking the time to talk to us, and I’ll throw it back to the podcast team now who are probably wondering where this interview came from and why I didn’t tell them about this.

Michelle Bishop:

Excuse me, wait. Pause a second. Jack, are you telling me that you secretly recorded a spotlight story?

Jack Rosen:

Oh, but I’m not a host, huh?

Michelle Bishop:

Oh, wow. This episode was going so well between us. Well, it was a great spotlight story, I was going to say, but maybe we should just go to Stephanie for the joke.

Stephanie Flynt:

I don’t know. Now I have Bad Blood by Taylor Swift in my head, and I’m just like, “Is that about to be the theme of the podcast?”

Michelle Bishop:

If it’s the Kendrick Lamar version, I think Jack will like it.

Stephanie Flynt:

Oh, wait. That’s the version where someone raps, right?

Michelle Bishop:

Stephanie, do you not know who Kendrick… I can’t. Just don’t.

Stephanie Flynt:

I do know who Kendrick-

Michelle Bishop:

Lamar.

Stephanie Flynt:

… he’s the one that sings the HUMBLE. song.

Michelle Bishop:

Sings?

Jack Rosen:

I think Nala knows more now because when I was dog-sitting her, I showed her the pop-out concert.

Stephanie Flynt:

The what pop-up?

Michelle Bishop:

As Nala.

Stephanie Flynt:

Oh, she’s asleep. She just glared at me. Okay, so I’m convinced that my life is a pun because apparently I need more change in my life all the time. Not only did I get married… don’t sigh at me, dog… I ended up moving to another apartment and all the fun, moving further outside of the city. But when we moved, we realized there was no overhead lighting in our apartment. And so when I was talking with Quinn about it, I was like, “Well, we can just look on the bright side and get some more lamps.” My life is a pun. It’s fine.

Michelle Bishop:

Everything about this is amazing.

Stephanie Flynt:

Yes. So it is Quinn’s fault that we don’t have any light. We have natural light, we just don’t have light, light. The fake news light.

Michelle Bishop:

Well, give Nala a pet from all of us, especially from Kendrick Lamar, and Jack, please tell the people where they can find us on social media.

Jack Rosen:

You can find us on LinkedIn, Threads, Twitter, Facebook, and Instagram. And as always, you can email us at [email protected]. Until next time, folks.

Stephanie Flynt:

Bye.

Michelle Bishop:

I’m tired.

In this (mini?) episode the gang interviews Stephanie’s wife Quinn McEben about their work as a mental health care nurse, and how mental healthcare can better serve the disability community. Also we talk a lot about their wedding.

Full transcript available at: https://www.ndrn.org/resource/ndr-may24/

Jack Rosen:

Can we talk for a minute about how we got on some sort of press release mailing list, and now people keep pitching us on podcast ideas?

Michelle Bishop:

I mean I just think that means we’re winning.

Jack Rosen:

If you are the person who put us on that mailing list, please reach out to me. I don’t mind. I’m not upset by it. I just want to know how this happened.

Michelle Bishop:

And I would just like to tell that person, thank you for your confidence in our podcast. Our listener, my mom, is very excited.

Stephanie Flynt McEben:

Wait, did your mom put us on those press lists?

Michelle Bishop:

You know what? If she did, that would be hilarious. And I would have to say well-played mom.

Stephanie Flynt McEben:

Because they are identifying you, specifically. The rest of us are nobodies. You are [inaudible]

Michelle Bishop:

Not only is my mom our only listener, but she’s trolling me through our podcast. I don’t think that’s true. But if it is, diabolical and I respect it, so what can I say?

Stephanie Flynt McEben:

I like it.

Michelle Bishop:

Jack, should we actually start the episode? [music] Welcome back everyone to National Disability Radio. We are so excited to have you back this lovely, gorgeous May. Spring is here. I am Michelle Bishop. I am one-third of your podcast hosting team.

Stephanie Flynt McEben:

And I’m Stephanie Flynt McEben, another member of our podcast hosting team. We got in trouble for the one-thirds last time, so I think I’m, is it the one-fourths?

Michelle Bishop:

It’s the one-thirds. I’m still enforcing this. Wait, we’re going to give that name change in a second. Stephanie slipped a little name change in there. So that is two-thirds of your amazing hosting team and our final host, Raquel Rosa will join us later in the episode for the interview. And then of course, as always, our trusty producer.

Jack Rosen:

Thanks, Michelle! That one was actually pretty nice. I appreciate it.

Michelle Bishop:

I want to stress that Jack and I don’t actually hate each other. We just can’t let this go. [laughter]

Stephanie Flynt McEben:

Let it go, let it go [inaudible]

Michelle Bishop:

Oh, wait. Do we have the rights to Let It Go?

Jack Rosen:

You can only sing like three seconds of that before we get sued.

Michelle Bishop:

Yeah. Disney, don’t make Disney come for us.

Jack Rosen:

Yes, that goes against my, we can handle any lawsuit rule. Not Disney.

Michelle Bishop:

Not Disney.

Jack Rosen:

That’s with the mouse.

Michelle Bishop:

No Disney. No. We’ll lose that.

Stephanie Flynt McEben:

Release the mouse.

Michelle Bishop:

So to redirect you from your beautiful vocal styling, Stephanie, tell us about this month’s episode.

Stephanie Flynt McEben:

So yeah, my wife is going to actually be our featured speaker on this month’s episode. As many may be aware, May is a Mental Health Awareness Month. And so we are going to be talking about individuals with mental health, disabilities and diagnoses when it comes to getting the care that they need and advocating for the care that they need. So super excited about this and this episode, it’ll be great. And I may or may not be a little biased, but–

Michelle Bishop:

Towards your own wife?

Stephanie Flynt McEben:

Yeah, kind of.

Michelle Bishop:

I mean, I would expect that, but also before we get into interview, congratulations Stephanie on having a wifey!

Stephanie Flynt McEben:

Thank you! Nala was a flower dog.

Michelle Bishop:

Stop.

Stephanie Flynt McEben:

She was included.

Michelle Bishop:

Oh, my heart can’t handle that. We’re going to have to see pics.

Stephanie Flynt McEben:

I was going to say there’s definitely pictures.

Michelle Bishop:

After we finish this episode everyone has to stay on it. We have to see pictures of Nala, the service dog being in the wedding. But congrats on your wedding and that’s why Stephanie had a sneaky little name change that she put in there with her new last name. And let’s jump to the interview.

Jack Rosen:

But wait, wait, wait. But before we do that, Stephanie, do you want to tell us who your wife is and why she’s on the show?

Stephanie Flynt McEben:

Yeah, so my wife, Quinn McEben is a mental health care nurse who works with clients who have varying mental health disabilities and varying mental health diagnoses. And so she works with them regarding their general health, their mental health, working with them on advocating for the services and supports that they need in particular in the healthcare space. So they do some really good work and super excited to hear about their perspective regarding this space. It’s going to be great!

Michelle Bishop:

Thank you for agreeing to be on this month’s episode. So I guess we’ll just kind of get right into it. So as individuals who live with disabilities ourselves, I know that we know firsthand some of the trauma that we’ve experienced related to our disability. And so we would love to get a provider’s perspective on different experiences that you’ve kind of worked with, with individuals and how providers and just individuals who are advocates for individuals with disabilities. Just how can folks be supportive and what has your experience with this been during your career as a mental health care nurse?

Quinn McEben:

Yeah, so I can kind of talk about some good things and bad things. So like you mentioned, I am a psychiatric nurse. I manage a lot of physical healthcare for a caseload with people with severe and persistent mental illness. And so I see both of it and both the physical health and the mental health disabilities. And I will say from nursing school on, we weren’t ever, of course we covered psychiatric care, but as far as physical health disabilities, people with blindness or hearing impaired or deafness in wheelchairs, we never talked about any of that or how to address that in a different way.

And so one of the biggest things I see with my particular clients is that it’s just what I would call medical trauma, which I would just describe as providers not being great. And whether that’s one of the things I see a lot is they come to the doctor for a physical health reason, say it’s chronic pain, say it’s diabetes, say it’s high blood pressure while they see their other meds and they see that they’re also diagnosed with schizophrenia, they’re also diagnosed with depression.

And suddenly that chronic pain is all related to the depression.Suddenly that diabetes doesn’t matter and we shouldn’t treat it because it’s just from the meds for schizophrenia. And so people focus in on the mental health side of it and is the somatic providers don’t necessarily focus in on other things. And so what happens then is those same clients don’t want to seek physical healthcare. And so I think the same thing happens in the mental health world, but I think the mental health world is better about just because we see a lot of clients with varying communication levels and just varying ways of looking at the world, which is I think a beautiful thing. But I think we’re kind of better about that. But as far as the physical healthcare, I think there’s a long ways to go. So a lot of my clients and a lot of my job really is advocating for clients and teaching them to advocate for themselves because whether it’s a physical health disability that’s visible or invisible, they get dismissed a lot because of any mental health concerns.

Stephanie Flynt McEben:

That is some super helpful information. Thank you so much for sharing that! I know that yesterday you and I were actually talking, specifically yesterday, about just general instances of when individuals, for example, who have mental health diagnoses or mental health disabilities,

Have not been believed by whether it be healthcare providers or whether it be just in different situations because of their disability. Could you talk a little bit more about that and what that’s looked like and how you’ve been able to help folks work through that, whether that be directly or indirectly through your job?

Quinn McEben:

Sure. So I think that looks like I was mentioning going to the doctor for chronic pain. And so something as severe as stomach cancer, right? And so imagine this, you have a client that is having stomach aches. It’s having a stomach ache, it’s getting worse, it’s getting worse, and they keep going to the doctor, but the doctor won’t do imaging because they’re like, oh, it’s stress, it’s anxiety. But they won’t do imaging. They won’t do any follow-up tests and when someone finally believes them it’s cancer that’s advanced to a stage that we can’t treat it. And these are kind of the stories that I unfortunately have seen that’s like I said, a generic example, but I have seen things that are that traumatic. And so things that I recommend to my clients are getting other, they can advocate for themselves and we teach those skills. But if the providers still aren’t believing them, because unfortunately there are some good providers and there are some providers that I think provide competent care that are discriminatory.

So you can switch providers or sometimes if someone else steps in, whether it’s a family member or another professional like myself where there’s a lot of support staff that talks to the physician and is like, “Hey, can we maybe think about running this tests?” And then just getting that outside advocacy, teaching those advocacy skills for the patient and then teaching them how to reach out to other people if they need. Again, it’s really sad that we mean that, but thankfully there are people in positions that are able to help. And then ultimately, if you have a provider that’s not believing you, you need a new provider. And not that we shouldn’t trust our healthcare providers, but I think that there is sometimes a mentality of that healthcare providers know best and we are humans, too. And so it’s about finding the right fit for you. And that healthcare provider might be great for someone who is able-bodied and doesn’t have any mental illness, but they might not be a good fit for someone who is diagnosed with mental illness.

Raquel Rosa:

Quinn, you were talking about self-advocacy resources, and I’m wondering if you could talk a little bit more about what that looks like and what plain language resources look like?

Quinn McEben:

So in my role, it depends on the client. We do it on an individual basis. And so some people are more familiar with different health terms and some aren’t. We have clients in my role that don’t have reading skills, and so we teach them whether they can still search on their phone for YouTube videos and they can hear how to describe their own conditions and they record before they go into the physician, this is what I want to say. And so we role play, what do you want to do when you say get into the physician. Because I think, I know I get nervous when I go into my physician of what am I going to talk about, especially if it’s a new provider. And so role play of what that looks like. And I think plain language I think can look different for different people because it really depends. And so in my role, I fortunately have the access to or the ability to talk to people where they’re at. And so it can look different for different people.

Raquel Rosa:

I really like that. I like that there’s a customized approach. And I think that also touches on trauma-informed approaches because I think people respond better when they feel seen and they feel like their needs are being focused on. So I think that’s really an excellent practice that you’re sharing with us. Thank you.

Quinn McEben:

Yeah, absolutely. And I think that that’s a lot of mental illness and even physical illness in a way is physical disabilities is rather than just a blanket approach of, okay, this person is a blind person and I met this blind person three years ago and that’s what they wanted. And so I’m sure this new blind person wants the same thing that people are individuals and they need their own individual things.

Raquel Rosa:

Right, yeah. I mean we’re all different people with different needs and to your point of even time, if you met somebody three years ago, it does not mean that those needs are going to be the same. So I think it really takes a lot of humility and relationship building and continuity of relationship to make sure that we’re addressing people’s needs in a thoughtful and powerful way.

Stephanie Flynt McEben:

Yeah, absolutely. Definitely, definitely would retweet. I don’t even know if that’s still a thing anymore. I like the idea of going about it and ensuring that we are approaching where individuals with disabilities are when it comes to the healthcare space because for a lot of individuals, and I will throw myself under the bus here, there are lots of times when I won’t go to doctor’s offices to get certain things checked out because I’ve not been believed before. And so that’s something that I definitely struggle with and definitely can relate to. So Quinn, yeah, thank you so much for sharing today about the things that you guys are doing in order to help individuals to continue to go forward with these types of things, despite the experiences that they may have had prior to that they’re worried are going to be repeated. So yeah, thank you so, so much for talking with us today about this.

Quinn McEben:

Absolutely! And from the healthcare provider side of it, when I’m talking to other healthcare providers who don’t have the privilege of those long-standing relationships like I have with my clients, I always just encourage them to ask the client what they mean. If you’re doing one MRI with this one client, just ask them because the client is going to know what they mean best.

Michelle Bishop:

Well, that was awesome and thanks so much to Quinn for bringing all their expertise to this episode. And also we said it to Stephanie earlier, so I’ll say it to you now, Quinn, congrats on your wedding as well and having your new amazing social justice warrior wife Stephanie, as well as congratulations to all the service dogs involved in the joining of this family. Okay, Stephanie, it’s that time. Do you have a joke for us this month?

Stephanie Flynt McEben:

Yes and no. It’s more of a story.

Michelle Bishop:

There is more of a story these days. These jokes get more and more elaborate. And I got to say, I respect it, Stephanie.

Stephanie Flynt McEben:

Oh, thank you, thank you! Thank you. So it’s one of those fun stories. So I don’t know if anybody’s ever told y’all, but, and apparently I’m really new to, clearly I’m new to the party. But all that to be said, individuals told me leading up to the day that something was going to go wrong, something was going to go wrong, something was going to go wrong. And yeah, my ring actually got dropped between the cracks of the gazebo, but don’t worry, it was recovered by ninja skills.

[“Here Comes the Bride” plays in background]

What really went wrong was we were on our way to our reception dinner and I was going down some Baltimore city steps and they were very uneven. One was two inches down and one was four inches down. I’m wearing three-inch heels. You add two, three and four to that and you get a broken ankle. So I quite literally fell for Quinn on my wedding day. And that joke is attributed to Quinn because Quinn is the one who came up with it and now I won’t stop using it and now they’re very annoyed with me. Fine, we’re all fine. And I literally looked up and I was like, well, I guess that’s the one thing that went wrong. And then I found out about the ring in the gazebo. So it was a good day y’all. It really was. I got to marry the love of my life.

Michelle Bishop:

You got married in a ’90s sitcom. They always had the episode with a wedding where everything goes wrong.

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

And Raquel’s not here. Raquel’s name is to live in a ’90s sitcom. Oh, okay. We might have to revisit this next month, but also shout out to you and Quinn for already acting like an old married couple and irritating each other by stealing each other’s jokes.

Stephanie Flynt McEben:

I love that.

Michelle Bishop:

[laughter] No, seriously, congrats to everyone involved. That’s another amazing episode in the books. And Jack, do you want to tell the people where they can follow us on social media?

Jack Rosen:

You can follow us on Twitter, LinkedIn, Facebook, Instagram, and now Threads. And you can always email us at [email protected]. Until next time folks.

Stephanie Flynt McEben

Bye. [music]

In what is (potentially*) the start of an ongoing series, this month we’re joined by our own Rebecca Shaeffer for a discussion of what people with disabilities experience in the carceral system, how they disproportionately end up there, and what we can do to support returning citizens.

*This is contingent on us being organized enough to do that.

Full transcript available at https://www.ndrn.org/resource/ndr-april24/

Jack Rosen:

All right. Michelle, you want to kick us off?

Michelle Bishop:

I’m sorry. Did we decide who was going to intro the topic and read the bio before we started recording? Or…

Stephanie Flynt:

No, we just clicked record.

Michelle Bishop:

Just started recording when we have no idea what we’re doing?

Stephanie Flynt:

♫ Be prepared ♫ Okay.

Michelle Bishop:

Was that The Lion King?

Stephanie Flynt:

Yes. Well, Nala’s here, I have to sing The Lion King.

Michelle Bishop:

Jack, use all of this.

♫ Intro Music Plays ♫

Michelle Bishop:

Hi, everyone, and welcome back to National Disability Radio. Woo. We don’t have a cheer sound, do we? I keep telling Jack to put a cheer sound in there, but I don’t think we have one.

Stephanie Flynt:

I think I said a cowbell.

Michelle Bishop:

Well, everything needs more cowbell.

Stephanie Flynt:

Yes.

Michelle Bishop:

But, everyone, applaud while you’re listening at home. Woo. All right. Good enough. I’m Michelle Bishop. I’m the voter access and engagement manager at NDRN and one third of your podcast hosting team.

Stephanie Flynt:

And I’m Stephanie Flynt, public policy analyst here at the National Disability Rights Network. And I am the two thirds. Can’t do fractions.

Michelle Bishop:

Look at us doing math.

Stephanie Flynt:

Yeah. I know.

Raquel Rosa:

I also don’t do math. This is Raquel Rosa. I am your community relations specialist here at NDRN, but if we’re going to do thirds, I do like pie and pizza, so we can pretend that I’m the final slice.

Michelle Bishop:

Also, it is April and none of us are doing your taxes, for a reason. We went into civil rights because math ain’t our thing.

Welcome, everyone. We have an exciting episode for you this month. Before we jump into it, do we have any news or exciting or, of course, hilarious things to talk about? And, of course, our producer should introduce himself as well.

Jack Rosen:

Oh, I don’t know, you introduced the three thirds of the podcast team.

Stephanie Flynt:

Oh, no.

Michelle Bishop:

The most bitter thing every episode.

Stephanie Flynt:

Okay, a four. Jack is now a producer host.

Michelle Bishop:

No. That’s not the vibe we discussed. This has been discussed. People all know it’s been discussed behind the scene that Jack is our Gelman. Okay. He’s our producer who’s featured on air. It’s a very specific important thing. I mean, Regis and Kathie Lee were nothing without Gelman.

Raquel Rosa:

That’s a reference for those of us who are over 40.

Michelle Bishop:

Wow. I feel personally targeted, but-

Raquel Rosa:

So, I’m right there. I’m right there.

Michelle Bishop:

Yes. So, we have a really interesting complex topic to bring to you all this month. We’re going to be looking at the intersection of the disability community and the criminal justice system. And this is a topic that it runs so deep in so much of the civil rights work we do in the disability community, and is so complex and so broad that actually if all goes well with this episode, we were thinking of turning this into a bit of a short series of episodes addressing this issue from different angles. Don’t ask us when those next episodes are coming out. We have not planned them yet.

But this month, we’re going to kick it off actually by talking to one of our own. We have for you Rebecca Shaeffer from NDRN. Rebecca joined NDRN in 2023 as a staff attorney for criminal justice and institutions. In this role, she provides technical support and training to P&As in their work monitoring, investigating and litigating rights abuses against people with disabilities involved in the criminal legal system, from police emergency response to jails, prisons, and reentry.

Prior to joining NDRN, Rebecca worked for over a decade in international human rights, where she helped to develop and implement new standards for criminal procedural rights in Europe, the US and Latin America, and supported networks of criminal defense lawyers with international and comparative legal expertise and peer learning facilitation. Raquel and Stephanie were live on the scene for this interview, so take it away ladies.

Raquel Rosa:

Today we have our very own Rebecca Shaeffer. She is the staff attorney at NDRN who focuses on criminal justice and institutions. Rebecca, thank you for joining us today. Tell us a little bit about yourself.

Rebecca Shaeffer:

Hi, I am so excited to be on the podcast. I’m an avid listener. I joined NDRN in July as the staff attorney for criminal justice and institutions. That means that I provide technical support and training to protection advocacy agencies for all of their work on behalf of people with disabilities who are in jail or in prison, who are in contact with police, or who are recently reentering back into society after being incarcerated.

My background is as an international human rights lawyer focusing on criminal systems and penal systems all around the world. And I’m super inspired by the work of NDRN and the protection advocacy agencies and just really excited to be part of this conversation and this work.

Stephanie Flynt:

Awesome. Thank you so, so much, Rebecca. Super helpful to have that background and super excited to have you as an avid listener of the podcast. So, you get a gold star for that one.

Rebecca Shaeffer:

I love gold stars.

Stephanie Flynt:

Yay. All the gold stars, all the awards, all the thanks. So, I guess, I would start off by asking, in your opinion, why do you think that individuals with disabilities are disproportionately incarcerated or affected by criminal systems?

Rebecca Shaeffer:

So many answers to this question. And first of all, I just want to acknowledge that people with disabilities can get into trouble with the law for the same reasons that anybody else can. And so, that happens. They’re people and sometimes they run into trouble and that’s definitely part of the story.

But you’re right that people with disabilities are disproportionately represented in prisons and jails and in criminal systems. And that’s for a lot of reasons, that really come back to our failure as a society to accommodate people in the community with disabilities and our failure to invest in collective care for people with disabilities, such that they become alienated from society. And that happens because people with disabilities, because of failure of society to accommodate them in childhood, because of abuse and neglect and exclusion from school and from activities, because of contact with institutions throughout growing up, may end up with trauma, may end up with a lack of educational and professional opportunities as they grow, or maybe attempting to self-medicate using drugs that are criminalized in our society.

So, for all those reasons, people with disabilities can end up with behaviors that are criminalized. But also, people with disabilities behavior is often misunderstood, particularly by law enforcement, as criminal when it’s not. This is particularly true for people with mental health disabilities, people with autism, developmental disabilities, intellectual disabilities, whose behavior in public sometimes attracts the attention of bystanders or of police and is misunderstood as dangerous or disruptive in some way. And they’re shuttled into the criminal justice system instead of having their needs met through health or care or other sorts of just normal cultural interactions.

We know that people with disabilities are more frequently hurt and killed by police in interactions and that they may find themselves in poverty and in homelessness and in other situations that leave them vulnerable to police intervention in ways that can be really dangerous for them.

There’s also ways that contact with police can go wrong in the course of normal traffic stops or other ways that police interact with people on the street, in public. For example, if someone’s deaf or hard of hearing, if they’re blind or low vision, or if they have mobility impairments, they may not respond to police when they’re told to stop or put their hands on the dashboard, in the same way that differently-abled people may, and that can be misunderstood by police and lead to unnecessary arrest or violence by police. So, these are the ways that people with disabilities get funneled into the criminal justice system at a disproportionate rate.

Raquel Rosa:

Thank you for shedding some light on that. Rebecca, you’ve touched on this a little bit. And in my thinking just about the breadth of the disability experience, I was hoping you could talk a little bit more about what it’s like for people with disabilities who are incarcerated. I’m sure it’s the big bite to take of the apple, but if you could just talk a little bit more about that.

Rebecca Shaeffer:

Being incarcerated is a horrible experience for pretty much everybody who goes through it. So, I want to start there, but it’s certainly not set up for people with disabilities. I mean, prisons and jails, like any other institution, have to comply with the Americans with Disabilities Act. Facilities should have an ADA coordinator, but nothing is going to away the fact that these facilities are just not set up for people with disabilities, regardless of what their disability may be. And this differs by facility and it differs between jail and prison. Prisons may be a little bit better some of the time at accommodating people, but if you can imagine, for example, being deaf, using sign language to communicate with people and having to be handcuffed every time you’re moved from one part of the facility to another. You can’t speak, you can’t communicate with people. How few people in that facility use sign language, understand your language, and how infrequently you’re provided with translation, appropriate video technology to make phone calls and communicate with, for example, medical staff.

All of these things make traversing an ordinary day incredibly perilous. And you can imagine the same thing for people who may be blind and low vision. Responding to the intense disciplinary regime on the intense demands for obedience and compliance with orders, requires an ability to understand and respond to the demands of officials quickly, or face discipline, which happens to people with disability quite a lot.

So, when their needs are not accommodated, they’re often disciplined, they’re put into solitary confinement perhaps, or they have privileges for folks. We may also find that people with disabilities don’t have access to programs inside, so they can be really isolated and not given the same access to recreation, to personal development that other people may have. And this can even mean that they end up spending more time in jail and prison than other people because they can’t, for example, get good time credits for taking programs, or demonstrate that they’re rehabilitating themselves in the same way that other people can.

So, there’s a lot of exclusion inside, a lot of isolation and alienation and a lot of punishment. So, we find that solitary confinement is used incredibly disproportionately against people with disabilities, often with mental health disabilities but not exclusively. And that has a knock-on effect of trauma and further disabling as people decompensate in an environment where they have really no stimulation, no human contact, no recreation inside.

And then, people who have difficulties with mobility just have trouble getting around these facilities. They’re not always accessible. People are not always given the medical equipment they need to get around. They may not be able to access the recreation yard. And we see this happen a lot as people age in prison and their needs change. There’s very little screening for people with disabilities, particularly for cognitive impairment, for autism, for DD and IDD. I mean, if you don’t come in with a strong sense of what your disability is and an ability to explain that to authorities, it’s unlikely that it’s going to get picked up.

And this is all happening in a background of just really poor access to medical treatment in a lot of facilities. So, if people have been on Medicaid on the outside. Inside, you don’t get Medicaid. Medicaid is cut off, social security is cut off, and your healthcare is provided by the prison or the jail. Usually, they have a contract with a private company and they’re motivated to cut costs. And in order to get access to healthcare, it’s not like there’s preventative care and you get regular well-personed visits like you would on the outside. You have to have a symptom that’s severe enough that you can convince a prison officer to get you to the medical clinic. And it can be really hard to convince workers at the prison that your medical complaint is serious and real. These are often ignored.

And then, the care that you get inside may be very, very poor. So, we see a lot of preventable illness and injury going untreated and people incurring unnecessary pain and suffering, illness, and untreated injury that happens to them because they don’t have regular and good access to healthcare. And there’s a lot of just punitive attitudes by prison and jail workers against people who are incarcerated. They’ll think that people are malingering, they say basically making up that they have health problems when they don’t.

And then, there’s also an accessibility issue here because in order to get the attention of prison officers to file a grievance or a request for medical care, usually you have to fill out a little form. And again, this is not a communication system that’s accessible to everyone. So, a lot of times people with disabilities have to rely on the kindness of another incarcerated person to help them fill out requests for medical assistance, grievances, complaints, requests for accommodations. And that can be really difficult depending on who you’re incarcerated with and what your disabilities are, what your relationships are like with people inside. So, everything just becomes much more difficult, and most people come out of prison in much worse health and with less capacity than they did going in.

Raquel Rosa:

This is incredibly sobering. And as you were speaking, I thought a lot about just the deference to people having bad motives, that in other words, people are governed to be sneaky or to do bad things. And so, therefore, the approach within the carceral system is to treat people poorly because they’re up to no good.

And then, with the added layer of disability, it just makes me think about easy scapegoat-type activities. This just sounds like a very lonely and painful experience for people. I am having a hard time just imagining what that experience is like. It is incredibly shocking and just makes me really think about the gaps that we have in our own movement to make sure that people with disabilities who are incarcerated are also part of the disability justice movement.

Rebecca Shaeffer:

Yeah. Thanks for saying that, Raquel. I think it’s really true. I mean, because of the nature of politics and the punishment ethos that’s really deep in American society, I can see where the disability justice movement hasn’t necessarily always embraced those members of our community who are in conflict with the law. I mean, it’s not a great constituency to bring to the hill. And there’s a way in which people with disabilities are sometimes seen with this sort of veneer of innocence, as good victims who need help. And we know that that’s not true and not the way that we want to be seen, not the way our movement wants to be seen, but this population of people, it’s a difficult constituency politically for our movement to embrace. But I think that we cannot participate in our collective neglect and abandonment of people with disabilities, that are the reasons why they ended up in prison in the first place.

And we also have to think about the future. What’s our vision for the freedom and liberation of people with disabilities? What do we think is happening to people in prison and what do we want for them on the other side of that? Most people are coming back to the community, and in what condition are they by the time they come out, if they come out? Because a lot of people also die inside or are further injured or disabled by their experience of incarceration.

So, I do think that we have to embrace our siblings who have experience of incarceration, to understand that jails and prisons are part of a continuum of carceral approaches to disability that includes institutionalization, that includes social erasure and exclusion from society. And to realize that jail and prison are just another way to disappear people with disabilities. And to refuse to participate in that, to continue to embrace them through the time that they’re incarcerated and all the way through their lives, requires us to confront our own stigma.

We also have to confront the ways that racism interacts with disability discrimination, and to understand that people who are, for example, Black and male and autistic, walk through this world with a different set of dangers than people who are white and autistic. And for us to really contend with those intersections, and to not leave any of us behind, because we’re not free till we’re all free.

Jack Rosen:

Rebecca, you’ve touched on a lot today, and I’m just wondering what we can do to support returning citizens with disabilities.

Rebecca Shaeffer:

I think it’s really important for people who work in this space, who work with people with disabilities to understand the ways that periods of incarceration impact the needs of people with disabilities. They are going to have disruptions to their benefit. They will have disruptions to their healthcare, and they will also have significant trauma and lack of faith in authorities. And all of these experiences make it harder to connect folks with the services they need.

So, to just be sensitive and proactive about understanding people’s histories of incarceration. You may not know that someone has been incarcerated before. You probably need to take proactive steps to reach out to places of detention, to reentry organizations to offer a disability-informed lens. I mean, ultimately, I think that neither the movement to reform our criminal legal system, our movement to liberate people from over-incarceration, and the movement for disability justice and liberty and power for people with disabilities depend on each other. And neither one of those movements is going to be successful without the other.

I see so often from my background in criminal justice reform that the kinds of reforms that are suggested often, unfortunately, are going to drive people with disabilities into institutions. Decarceration by itself is not going to solve the problem of failure to invest in community care. And at the same time, the disability justice movement can never be fully realized until we get our people free from prison.

So, I think that we need to be deeply in conversation with each other to ensure that the kinds of solutions, the kinds of policies we’re promoting are cognizant of the fact of criminalization of people with disability and the failure to provide appropriate care in the community, both driving incarceration and driving institutionalization.

And we’ve seen in the past few years, just a huge backsliding in commitment to freedom for our people. We’re seeing a return to policies that promote institutionalization, and we’re seeing a backlash to the small reforms we got following the uprising around the murder of George Floyd and the decarceration efforts that were made during COVID. Just a huge backlash and movement to both re-incarcerate and re-institutionalize our people, and a failure to invest in what we know works to keep people safe and together and in community.

So, I think that movement actors in both of these fields need to work really closely together and understand what it is people need to be safe and to be free, because ultimately, that’s a goal that we have in common, people who are working to make the criminal justice system fair and people who are working for disability justice. But the solutions don’t lie in just one of these conceptual political areas, and the solutions are what we need to focus on, because right now it seems like political actors and the press and the public seem to think the only option for meeting people’s needs is to put them somewhere, put them in a jail, put them in a hospital, put them in a group home, take them out of the community. But these are our people, this is our community, and we can only build public safety for all of our people together.

Stephanie Flynt:

Wow. Thank you so, so much, Rebecca. This has been an amazing discussion and I’m so glad that we were able to have this discussion today. I know that I found it very valuable, and I’m sure that our listeners will also find it valuable.

But I wanted to check in with you to see if you have any other final thoughts. I know that Jack made a great point about checking in to see how we can support individuals with disabilities when it comes to transitioning out of the carceral system, but I just wanted to see if you have any other final thought that you’d like our listeners to know or that you’d like us to know?

Rebecca Shaeffer:

Such a downer. I’m never the fun one at the party.

Stephanie Flynt:

You are the fun one. That’s why we have you here.

Rebecca Shaeffer:

The work that I do. I guess, what I would say is that despite the grimness of this area and the pain and the suffering that people are going through in incarceration, I have a lot of hope for this movement, particularly at the intersection of disability and criminal justice for reform and liberation movements, because I think it touches on such core values that we have as a society. Values around liberation, around belonging, and that there’s a huge amount of joy, of healing, of redemption that’s available to us if we can address the stigmas that we all have, both against people who have been in conflict with the law and people who have disabilities. And continue to work toward acceptance, belonging, and working towards solutions that really prioritize safety and health.

These are really positive values that we can promote that, I think, work politically, that work interpersonally, and that can lead to real paradigm shifts in what we consider to be public safety, because that means safety for our people.

Raquel Rosa:

Well, Rebecca, like I said earlier, you’ve given us so much food for thought, enlightenment and ways for us to just deepen our advocacy and to lean into the less obvious aspects of disability justice.

I feel like this is probably the most humbling episode that we’ve ever had, and I think I speak for all of us when I say how much we appreciate you for the work and commitment you have made to this aspect of our work. Thank you so much for being here.

Michelle Bishop:

Stephanie and Raquel, thank you so much. And of course, Rebecca as well. That was a fascinating conversation. I feel like we opened up more issues than we can possibly resolve in one episode of one little but very mighty podcast. So, I suspect you are going to hear some more episodes from us going forward, on this issue. But until then, now that she’s back in action, I suppose I have to ask, Stephanie, did you bring us a joke?

Stephanie Flynt:

Okay. Are you ready for my very much anticipated joke? Because I think it’s going to be a home run today.

Michelle Bishop:

Oh, no. Oh, that’s a clue. Okay. Yes, Stephanie.

Stephanie Flynt:

Oh yeah, absolutely. So, I do have a question. What do y’all think that brownies and baseball teams have in common?

Michelle Bishop:

Okay. Wait, wait, wait. So, brownies, the dessert, and a baseball team? Is that the question?

Stephanie Flynt:

Yes. Yes.

Michelle Bishop:

Okay. I’m thinking.

Stephanie Flynt:

What they have in common.

Raquel Rosa:

Is it batter?

Michelle Bishop:

Oh.

Stephanie Flynt:

They need to have good batters.

Michelle Bishop:

Oh, boy.

Stephanie Flynt:

This is courtesy of the Ben and Jerry’s thing in my fridge. I can’t remember what, I think that’s their chocolate fudge brownie thing. Not that this is a sponsorship, but if Ben and Jerry’s wants to sponsor my-

Michelle Bishop:

Your freezer?

Stephanie Flynt:

My freezer, that would be great.

Michelle Bishop:

Stephanie’s freezer brought to you by Ben and Jerry’s. There’s a chance we can’t use any of this, can we? Can we use this, Jack?

Stephanie Flynt:

I gave credit to Ben and Jerry’s.

Michelle Bishop:

Are we allowed to talk about them like this?

Raquel Rosa:

I think that’s another question for our general counsel.

Michelle Bishop:

All right. I’m making a list.

Jack Rosen:

I mean, my answer is, as I’ve often said on this podcast, if they sue us, it would be good publicity.

Raquel Rosa:

Then, I guess, you’re taking care of the legal fees, Jack.

Michelle Bishop:

Why are we allowed to run anything in NDRN? Is the real question.

Stephanie Flynt:

Right.

Michelle Bishop:

That said, got to admit, decent shows this month. Welcome back, Stephanie. We missed you so much.

Stephanie Flynt:

Oh, it’s great to be back. Thanks, Michelle. Thanks, Raquel. Thank you, Jack.

Michelle Bishop:

Jack, tell the peeps where they can follow us on social media.

Jack Rosen:

You can follow us on Twitter, LinkedIn, Facebook, Instagram, and now we’re even using Threads, so be sure to check us out. As always, you can reach out to us at [email protected]. Until next time, folks.

♫ Outro Music Plays ♫

On this episode of National Disability Radio, we sit down with three women leaders in the disability rights movement, Marlene Sallo (NDRN), Maria Town (AAPD) and Robin Troutman (NACDD) for a discussion about the challenges of being a disabled woman in a leadership position, the challenges of balancing work and caretaking, and even the Barbie movie.

Full Transcript at: https://www.ndrn.org/resource/ndr-march24/

Raquel Rosa:

Give me the signal.

Michelle Bishop:

Get us started. That would be stretching if you heard that.

Raquel Rosa:

That stuff is all to be removed. 3, 2, 1.

*Intro Music Plays*

Michelle Bishop:

Welcome back to National Disability Radio. To all of our loyal listeners, we are really excited this month because it is Women’s History Month. I am Michelle Bishop with NDRN. I am one of your hosts of the podcast.

Raquel Rosa:

And I am Raquel Rosa. I am another of our hosts. It’s good to see you all today.

Michelle Bishop:

And unfortunately our last host, Stephanie Flynn, is out on leave. So she’s not with us this month, but she will be back. Stephanie, we miss you. Don’t leave us. I can’t believe I’m going to say this. We are not going to have your jokes, and I might miss it a little bit. So come back to us soon, Stephanie. So like I said, it’s Women’s History Month. Here we are, your all woman podcast, plus Jack. Jack, our producer, if you want to introduce yourself to the people.

Jack Rosen:

See, I was just going to sit back and listen, being as it’s Women’s History Month.

Michelle Bishop:

Oh, bravo. Yes, yes. We love an ally, yes.

Raquel Rosa:

Yes. Sisters before misters. Thank you, Jack.

Michelle Bishop:

So should we get right into it? Raquel, do you want to tell the people about this episode?

Raquel Rosa:

As Michelle said, this is Women’s History Month, and she had the pleasure of sitting down with three women leaders in the disability rights movement. She had a great conversation with Marlene Sallo, the ED of NDRN, Maria Town, who is the president and CEO of AAPD, and Robin Troutman, the interim ed of NACDD. Take it away, Michelle.

Michelle Bishop:

So this month on National Disability Radio is Women’s History Month. Ladies, it is our month and we have a really exciting conversation for you today. I’m going to be talking with three women who are leaders in the disability rights movement about where we’re at, where we’ve come from and where we’re going. So if I could ask you all to take a moment first to just introduce yourselves to our listeners, Marlene, would you like to go first?

Marlene Sallo:

Sure. Hi, everyone, I’m Marlene Sallo and I’m the executive director here at NDRN, and I go by the pronouns she/aya.

Michelle Bishop:

And Maria.

Maria Town:

Hi, everyone, my name is Maria Town. I’m the president and CEO at the American Association of People with Disabilities. Pronouns she, her and hers.

Michelle Bishop:

And last but never least Robin.

Robin Troutman:

Thank you, Michelle. Hi everyone, I’m Robin Troutman, interim executive director at the National Association of Councils on Developmental Disabilities. And I go by she/her pronouns.

Michelle Bishop:

So to get us started, since we just have such an amazing group of leaders on the podcast today, I was wondering if you could just tell us a little bit about your experiences specifically as a woman in leadership in the Civil Rights Movement and what it took for you to get here. It’s an open question for anyone who has thoughts.

Marlene Sallo:

Well, being that I’m in my feelings today, this is Marlene. I can safely say that it’s been a long road. I would say I’m the oldest one here on the call. And being a woman of color and an immigrant, there’s been a lot of doubt along the way from certain people in certain circles as to whether I could rise to the occasion. Obviously, I always have, but the microaggressions that I’ve encountered throughout my career are real. But you learn to ignore the noise, and you just live to your full expectation, and you show up to work, and you get the job done.

Robin Troutman:

This is Robin. I’ll just note that as a relatively new leader in nonprofit worlds, I suffer from a terrible case of imposter syndrome, that I definitely look around the room even on this podcast today of oh my, how am I included with these extraordinary women? But every day I learn a little bit more how to believe that I’m supposed to be here and just prove myself, as Marlene said. Just show them who you are and what you can do, and it will keep them quiet.

Maria Town:

This is Maria. I’ll just add, and I want to point out that Marlene said something amazing. She said, “Obviously, I always have.” And I just want to cheer for that. Obviously, she’s always risen to the occasion, and that’s true for so many of us. I think for me, especially as someone who is younger and who has a very visible developmental disability, a lot of times when I come into rooms, people just assume that I am not a leader. And I’ve had to really learn how to exert and show my own power because I think people just assume that someone who moves like me and who looks like me isn’t going to be a president and CEO.

And I’ve had to deal with a lot of internalized ableism, and I’ll give an example of this. Being specifically a leader of an organization that does a lot of work in DC, there’s a lot of moments where you’re supposed to be working a room, moving around it and shaking hands and making sure you catch the ear of a policymaker or another influential change maker. And I physically cannot do that a whole lot of the time. And so I have to constantly tell myself that I’m able to do the job that I have and find other ways to make it work. And that often relies on actually working with other people like Marlene and Robin and saying, “Hey, can you go tell this person over there that I want to talk to them and maybe make them come to me?” Or positioning myself next to the food or the drink table to make sure that I am seen, so that people can’t just walk on by or look me over.

Michelle Bishop:

Maria, positioning yourself next to the food is absolutely brilliant. I am stealing that one in the future. But we’ve known each other for a while, Maria, and I’ve never heard you talk about that before, about the expectation of who you are when you walk into a room based on your disability. That’s really powerful, and all of this is real. The ableism, the microaggressions that Marlene talked about, especially for women of color, all of these things that we’re up against, even if we keep moving forward. And I actually really felt Robin when she was talking about the imposter syndrome. That is my life every day. I constantly feel like a kid from Syracuse, New York, and every time I’m in a room with important people, I’m like, “How exactly did I get here?”

So it’s real and I think that that’s really a common experience for women, in particular, who are in places of leadership. And we could probably take more than a podcast episode, it would probably take a whole day just to dig into one of those issues. And I regret that it’s just a podcast and we don’t have all that time. But if we were to maybe take it and do something with it, something that’s useful for our listeners, how could we maybe better support women who are in our movement and create meaningful opportunities for involvement and for leadership for women in the disability rights world?

Robin Troutman:

This is Robin. I think something that is so important, not only in the disability community but for women, is that we have to just support each other. We can’t be fighting with each other because we’re already getting a lot of, as everyone said already, internal ableism and systemic racism and ableism and misogyny. And so we have to be able to support each other and uplift each other, because if we don’t do it for ourselves as women, as women or in the they/them or women presenting, then who else is going to? So we need to be able to find our own common ground and lift each other up.

Maria Town:

This is Maria. I feel like it’s always important to point out that disabled women and women of color and women leaders need a lot of the same things. Being a leader does not mean that you don’t also have caregiving responsibilities and need paid leave. Being a leader doesn’t mean that you also aren’t on benefits and need drastic improvements to our nation’s benefit systems so that you can save money and actually plan for your future. And I think a lot of the policy change that all of us are working on as individuals and all of us are working on in our organizations is hopefully change that when it happens will allow more women to lead, more women of color, more disabled women, more queer women, because I am constantly thinking about just who is not in these spaces with all of these important people. Not because they don’t have the knowledge or the expertise or the skills, but because our systems are keeping them out.

And I think one of the reasons that I am where I am today is because systems happened to work for me, and I feel like it was a just moment of luck, and I shouldn’t have to feel that way. I should have confidence that systems like inclusive education will work for everyone. And I think we still got a lot of work to do on that front.

Marlene Sallo:

I agree with everything that was said, so plus one for both of you. I also think about my role as a leader, and really I feel that I have a responsibility to those that come behind me to be a role model, to also bring those along with me, to lift others up, especially young professionals and help them and try to connect them to folks, especially here in DC where it is just so difficult. Just to make sure that I can serve as a source or a bridge for young professionals is so very important for me, especially those that don’t get the same opportunities that others might.

I myself, I went to Title I schools and we had public assistance, and so I worked really hard, but it was that one person who held their hand out to provide a reference for something or who really served as a role model and as a cheerleader for me, which will forever be my eighth grade teacher, Mrs. DiCarlo, that I think of to this day who gave me that extra oomph to have that self-confidence. And so as women, we need to be able to provide that to each other.

Michelle Bishop:

I love this story of a teacher. I don’t know if you all know my mom was a teacher, she’s also our podcast listener, but my mom was a teacher. So you’re going to make me cry, just thinking about how one person that you even meet maybe early in life as a kid is someone who you’ll remember for the rest of your life as having such an impact on the course that you took. I can relate to that. I imagine all of our listeners can. So I want to open that up to everyone. Were there women along the way who helped you get to where you are or are still a mentor or a cheerleader for you? I like that when you use cheerleader, women supporting women, I think is so important. But were there women along the way that were there for you?

Maria Town:

This is Maria. There were so many women along the way for me, really starting with the women in my family, my mom, my grandmothers who I was just thinking about this yesterday. My mom really encouraged me to dream. And I’m from South Louisiana and I thought it was funny that whenever I wanted to learn how to sew, which all of the women in my family did, my mom really did not want to teach me. And I think part of that is because she wanted me to know that I had options beyond being in the home. And my mom is a nurse, but she always really just encouraged me to dream so big and bigger than what I could see in front of me in South Louisiana.

And it’s interesting because I’ve met women along the way who helped me refine a sense of what I wanted to be and who I wanted to become because, of course, disability advocacy was not a career path that I ever saw as a child or even a young adult. And as I’ve continued on my journey, there have just been so many women who have been in the same field as me or folks who are in a completely different field. And I continue to rely on multiple group chats of other disabled women for support and guidance and whenever I need to just yell. I would not be able to get through my day without the support of other women.

Marlene Sallo:

This is Marlene. So along with Maria, I have to say my abuela has always been my biggest cheerleader and biggest supporter. She always used to say, “I brought you to this country so that you could have the freedom to be all that you want to be and all that you can be.” And so she too showed me how to sew. She was a seamstress in Cuba, so I give her a thumbs up for that. But she was also the first one to say, “When you marry, remember you’re not your husband’s maid. It’s equality.” Because in the Latino community, there tends to be that machismo going on.

But along the way I would say my colleagues, I’ve always had a really strong sisterhood with colleagues. We protect each other from any negativity. We lift each other up. We amplify each other’s voices. I think that’s been the best thing of all in my career. Sadly, outside of Mrs. DiCarlo from a leadership perspective, I’ve always worked in a very male-dominated arena. But I will say that the managing attorney in my first legal job, to this day we remain friends because she was so very supportive from day one.

Robin Troutman:

This is Robin and I’ll just start by saying I’m very jealous that you even had the opportunity to learn to sew because I did not and have been struggling to put buttons on my children’s clothes. So jealous that you all had that. I wish I had the ability to sew.

Maria Town:

We can teach you, Robin.

Robin Troutman:

Thank you. Please, please. I could barely do a button. It’s really, really sad. But I think similar to what Marlene shared, my grandmother was just a remarkable model of strength. She came to this country after World War II. She was a Holocaust survivor. She was a cancer survivor. She lost most of her family throughout the years. She lived to be 99. She lost her husband. She lost her oldest daughter, who was my mother. But she always was opening the home, cooking and feeding and saying that we always had a place with her. And so I’m that way too. People have a place with me. They can come over. I’ll feed you. I’ve definitely learned that, that we need to have more of these open, safe spaces for everybody, not just our younger generation and our children, but everybody needs a place where they can feel safe.

And so I’ve learned that from my grandmother, that despite everything that you might go through, that you can still be that guiding light and solid rock for others. And so I try to do that for my friends, my colleagues throughout. But there has been one woman leader who I, to this day, we still get lunch every so often. And I don’t think she realized that I was just sucking up all of the information and mannerisms and everything, how she dealt with conflict I have by osmosis gotten from her. And I feel like I’m a much better person who can have conversations, be more diplomatic, and it’s all from a former supervisor, Melinda, who is just an extraordinary woman.

Michelle Bishop:

I can say for my part, I don’t know if any of the three of you realize how much I look at the three of you in awe on a regular basis because you are all just rock stars. And it’s really amazing and it’s really exciting to see. And the fact that we’re having a conversation about women in leadership in the movement and we’re talking to three women who are running disability rights organizations is incredible.

As we’re having this conversation and all of your stories were amazing in striking, I feel like I learned a lot about all of you today, but moms came up, grandmas came up. We talked a little bit about teachers or professional colleagues, but there was a lot of those women in our families. And earlier in the conversation someone brought up the concept of caregiving. And that’s stuck with me as well in this conversation, where women, we’re going to work, and we are supposed to be bosses and leaders at work, and we’re crushing it, and we are breadwinners for our families and are contributing in that way.

But I feel like there’s still this expectation that on top of all that women are still caregivers. Whether or not we’re talking about a partner or children or aging parents or a loved one with a disability, I feel like that expectation is still there, that women are supposed to be the nurturers and the caregivers. And I’m wondering, what’s that for you all? Is that a pressure that you feel? And if so, how do we find that balance between being a boss at work, and I mean that in a good way, in a way like you’re crushing the game, and also maybe fulfilling some of those that we have at home?

Marlene Sallo:

Ooh, if I may jump in here, it’s Marlene. It’s really hard. I raised my kid by myself, and then that set things in motion where you were constantly going above and beyond what you needed to do because you didn’t want anyone to frown upon the fact that you also had to take care of your children at home. And then my grandma was sick, and we all were pitching in, so then that was the double requirement. And I was here in DC and you find yourself apologizing that you need to go back, that you need to fly out of DC to be there and pitch in for your loved one who was ill. And through all of that, as a woman with a disability who was self-identified later on in life, my disabilities are not apparent, you’re trying to keep all of that in check so that folks don’t say, “Not only does she need extra time, but she also has has a disability that’s keeping her out of work because of pain or whatever.”

And it’s a push and pull, and it shouldn’t be that way at all, because we’re all carrying and we’re all taking care of others and carrying our own personal loads. And we should show each other grace 24/7 because regardless of what’s going on at home, I’m still going to show up to work and I’m still going to get my job done. It may not be within the timeframe that you want, that 9:00 to 5:00 timeframe, but for all you know, I’m getting up at 5:00 in the morning and getting things done before I have to take care of those in my household. And in the evening I may put everybody to bed and then pick up and continue where I left off.

And a perfect example was my first week on the job as an attorney with the state, and my son got really, really ill, and I couldn’t be at work. And I was responsible for first appearances in the courtroom, and I did all of the petitions from my house using my FAX while taking care of my sick child. And fast-forward my first evaluation, and they thanked me for going above and beyond, but said, “I can’t give you the score I want to give you on your evaluation because we don’t have the money to give you a bonus. So we’re going to give you a three instead of a five. But know we noticed your extra effort.”

Robin Troutman:

Oh my Lord, Marlene.

Marlene Sallo:

Oh, I have stories.

Robin Troutman:

I’m sorry that happened. That’s not fair. But I will say similar almost is after I had my second child, six weeks later, I was carrying him at our annual conference because we did not have the ability to hire a temporary staff. So I walked around an annual conference with my newborn six-week-old baby strapped to my chest. But no bonus points there either. But as women we’re expected to make it happen when others aren’t. And I have to say I’m very fortunate that my husband, when it comes to cooking and cleaning, I know that I can count on him, but for things like taking the kids to the doctor and making appointments and knowing when everything is, that does still fall to me in that nurturing aspect. I don’t know if it’s not that he can’t, I think it’s just that’s my organization style.

I’m not quite sure. But that piece where with my kids, I have a 13-year-old and a 5-year-old. They’re at very different stages in their life, but they need their mom, and also they need me to work so that they can do the things that they want to do and play sports and use the computer. So it is always that push and pull. Marlene, you mentioned push and pull, and I immediately think of that amazing monologue in the Barbie movie about women. And it’s true. We can’t be everything to everyone all the time, but we also need to be afforded some grace, and sometimes we’re just not given it.

Maria Town:

Shout out to America Ferrera. And Robin, it does not have to be this way. It does not. And I think one of the things that I’m trying to do at AAPD is really focus on our organizational policies and culture so that our team, including myself, doesn’t have to be in these positions. And it’s something that I’m just constantly working on, and I don’t have children, but I do provide a lot of support for my family. And similar to what Marlene mentioned, I live in DC and my family lives in a different state and so a lot of that caregiving and support is remote. Very recently, my father was very, very sick, and I was his primary caregiver. And there was a moment where I was at the hospital with him, and again, he’s dying at this point. And so I was trying to be in all of his appointments.

But going back to the story I shared at first, because I have a mobility aid and I have a disability that makes my body spastic, a lot of the healthcare providers did not want me to go into the room with him. And they would say things like, “Oh, the exam room isn’t going to be big enough to fit your scooter.” At one point someone said, “Oh, well the wife usually goes back.” And my dad is single, he does not have a wife. And it was a reminder to me of just how much of our care system is just assumed to be done and built and continued by women. And I was constantly worried that my dad’s medical care and healthcare, the quality of it would be impacted because of ableism that was directed at me as his caregiver. And thankfully I don’t think that that happened, but it was just a constant.

And I also want to note, especially in the disability community, I provide a lot of care for friends, and a lot of friends provide care for me, and it’s been tricky. So over the pandemic, I lost ability to put on my shoes by myself, and it stunk because I can literally do everything else I need to do, but when it comes time to put on my shoes, I cannot figure out how to make it work. And so I’ve had friends come over and help me with my shoes, but it’s not enough of a need to qualify for something like personal attendant services. And when I travel now to conferences, I have a pair of shoes that I can slip on my feet, and I now have a running list of disability leaders who have helped me fasten my shoes, because I’ll flag somebody down at a conference and say, “Hey, can you help me?”

Just letting you all know, Marlene, Robin and Michelle, I’m sure one day I will ask you. But I don’t think that people would assume that the president and CEO of a civil rights organization often has to rely on the kindness of strangers to help her put on shoes, but that is a very regular occurrence for me every time I travel for work.

Michelle Bishop:

We got you, Maria.

Maria Town:

Thank you.

Robin Troutman:

Happy to help anytime.

Michelle Bishop:

Totally. Maria, you never once judged me when I’ve been … I can remember this time you and I were on our way into a meeting at the Department of Justice. It is the longest walk ever back to that conference room, you know the one I’m talking about, and I was limping something fierce that day. And you didn’t say a thing, and you didn’t judge, and you didn’t even point out that I probably should have worn more practical footwear when I knew darn well I was limping before I left the house that morning. So I got you. If you ever need a shoe, I got you.

Maria Town:

Thank you all. I really appreciate it.

Michelle Bishop:

Yeah, that one question just opened up more than I think I could have imagined in terms of the weight that we carry every day, but also the ways in which we’re showing up for and supporting each other, which is also really amazing. I think about that a lot these days, especially in this current world of work-from-home and hybrid work, which I think opens up a lot of amazing benefits to our lives and to how we manage work in life, but also comes with maybe some unanticipated side effects.

When everything is a Zoom meeting, they get scheduled back to back to back, as if no one needs a moment in between to do anything else or to catch their breath or to make sure a shout out to Rebecca Coakley and make sure we all ate lunch today, as disabled women often do not do. Or meetings get scheduled real early or real late because everyone’s thinking, “You just got to log into a Zoom and you’re already home and it’s not a big deal.” But who’s got kids at home that needs to switch over to parent duty and can’t necessarily take a late meeting just because it doesn’t mean that they have to run across town on the red line?

Actually Robin and I are on a coalition call together that used to be scheduled for every week very late in the day on a Friday, and Robin is my hero because she was the only person who had the nerve to say, “We can’t keep meeting at this time. My kids are off school. It’s a Friday. They go wild at this time.” And to which I immediately then was emboldened to jump in and say, “I, like Robin’s kids, lose all control after this time on a Friday as well.” And we were able to get that moved because it was totally impractical. I’m sure you remember that, Robin.

Robin Troutman:

I sure do. That was. Just even thinking about the pandemic and just I don’t understand how during the pandemic, because I guess we all were doing it, we just had that grace that we mentioned earlier. We allowed for grace. I was on a call with, if you remember early in the pandemic, the administration on community living. And my now five-year-old, who was only less than two, comes up to me to tell me he has poop on his hands in full volume to everyone at ACL. Just had to be like, “You got to wait a minute now because I have to go clean something.” But I feel like it’s only been four years. Despite what everyone is saying, what people are thinking, COVID is still real, and we need to be very aware that it’s not over for the disability community, a lot for the elderly. So we need to remember that just because it works for some, a situation is not going to work for everyone. And we need to be more accessible, more flexible and just more willing to listen and make changes.

Michelle Bishop:

Actually, that, I think, leads nicely to where I wanted to take this conversation to start to wrap us up, which is to say that a lot of our listeners, with the known exception of my mom, if you guys don’t know, it’s a running joke on the podcast that my mom is our only listener. But most of our listeners are staff at P&As that are in NDRN’s network, and we like to have something that they can do about this. If there was one thing they could do right now or how can they lead from where it is that they sit. Even if they’re not, we’ve got a lot of executive directors on the show today, but they may not be in that position of leadership at their organizations. How can they lead from where they sit? What is one thing that they can do right now to support women taking on meaningful leadership roles and coming up in this movement?

Marlene Sallo:

I would say, this is Marlene, we all start from somewhere. So as you said, from where they’re at right now, look to your left, look to your right. If there’s anyone that you can support, do so. If anyone is having a rough day, be kind, step up, try to give them a helping hand. And I always want to be surrounded by women that will say my name in a room when I’m not there in a positive manner. I think that is key to showing support to those in your circle, regardless of whether you’re a young professional or you’re days from retirement or even post-retirement. That’s what I want to be surrounded by. That’s the kind of group that I want to belong to. That’s the community I seek. It’s like we say each other’s name in the room when we’re not there, and it’s always for the positive, and it’s always to lift each other up.

Maria Town:

This is Maria-

Robin Troutman:

This is Robin. I’d like to … oh, sorry.

Maria Town:

I just wanted to shout out Michelle who’s done that at least twice today. So on emails today, Michelle has looped in a member of my team that I thought was copied who wasn’t. Robin, she’s looped in you. Just to shout out our host, Michelle is one of those people who I think really embodies that practice. Marlene, and I think that’s such a good way to be. And I also want to shout out the AAPD team who constantly push me in, again, our organizational culture. And I think if you have a way, even if it’s with your supervisor or another colleague of saying, “Hey, I really need meetings to start at 9:30 because it’s tough for me to be super alert for 8:30 or 9:00 AM,” or “I have to do kid drop-off in the morning. Can our meetings start a little later?”

Even conversations like that amongst colleagues can build towards larger changes in your organization and help you build up a coalition of the willing, folks who you know, you share values with, who will have your back when you want to take it up to the next level or challenge others in positions of power who might be helping to maintain these systems that are built with misogyny embedded in them. So Robin, I’ll pass it to you.

Robin Troutman:

No, thank you, Maria. I actually was going to say the same thing as a thank you to Michelle just because just like you said, she looked around, and she was like, “Wait, there are some women missing in this email thread.” And so thank you, Michelle, for making sure that the people who needed to be represented are represented. But just like my colleagues are saying on this call, one, we have to practice what we preach. We are always being looked at, especially as women, but as women leaders, as women leaders with disabilities. I too have non-apparent disabilities. I don’t necessarily promote myself as that, but I do. So we’re always being scrutinized, so we need to be in public supporting each other, finding who’s missing, who needs to be part of the conversation.

And I’d also really put in a plug for mentorship. You never know who sees you as a mentor, but there are so many young people there and not even young in terms of age, but young to our network and young to advocacy. So take them under your wing, and even if it’s just like a brief coffee conversation or tea, if you don’t drink coffee, or water if you don’t drink tea, it’s taking a few minutes to make somebody feel welcomed and that they are vital to the conversation goes a long way as well to uplifting and supporting.

Michelle Bishop:

This is an audio podcast, so none of you can see me, but I’m cheesing right now. Thank you. Y’all made me feel so good. But yes, it’s important to me and I know it’s important to all of you. Women supporting women is a big part of how I think we all have gotten to where we are and keep it moving even when it’s hard. And I think that that’s really important. And I would say also to our listeners as well, if you are listening to this podcast and you don’t identify as a woman, you are not excluded from this conversation. There is room for allies in every movement. And if you look around in a room and you don’t see any women or women who are in positions of leadership represented, that’s a thing that you can call out or invite other folks into the room.

There are different points in my career, and I bet it’s happened to you all as well, where I am sitting in a meeting and a male colleague has asked a question about something that I was working on or given credit or a project that a woman colleague of mine had actually been working on. And I think anyone in that room can see that, be conscious of it and call it out and take steps to correct it. Anyone can do that and can support women who are coming up in the movement, and I think that’s really important. There are small things.

Marlene started off the conversation today talking about microaggressions, and I think there are small things that we can all do to see those, to be conscious of them and to see them and to acknowledge that they’re there and to do something about those in the spaces that we’re in from the chair in which we sit. So hopefully that inspires some of you. We’ve had some amazing inspirational conversation today about so many things and what each of you are up against, but also where you find strength and support in how you’re getting it done. And I think that’s incredible. I think that’s the message of March is that women rock. At least that’s what I take from it.

We even shouted out the Barbie movie, which I think is very important actually. I think we all know that monologue from the Barbie movie that was referenced and how much it absolutely hit the nail on the head. I know we probably opened up more questions than we answered today, but it’s an ongoing conversation, and it’s an ongoing process. And I’m just so thankful to all of you for joining us and having this conversation with me today. You know I think all of you are incredible. I’m sure all of our listeners know it now as well. But thank you for taking time out of your really busy schedules of juggling all of the things and having this conversation with us. I really appreciate it.

Raquel Rosa:

Well, thank you, Michelle, for hosting a really lively and empowering conversation. As women, we obviously look up to others who are leading this work, and I think we are seeing a legacy being formed before us. So thank you for facilitating that conversation. And I don’t want to put words in your mouth, but I’m sure it was a really special experience for you.

Michelle Bishop:

It was awesome sitting down with those three. I didn’t know how deep the conversation was going to get, but they brought the realness, which I know all three of them, so in retrospect, I should have known they were going to bring the realness. It was so cool to have that conversation. And what you’re saying now is making me think of this conversation I had with a colleague of mine years ago, where we were talking about how when you look at the Civil Rights Movement, there’s so many women in the work, there’s so many of us that work for these organizations, and we were like, “Ten years from now we look around, and none of us are in leadership positions, and none of us are executive directors and CEOs, then we know there’s a problem.” So the fact that it was so easy for us to identify three powerful women who are at the heads of their organizations that are major disability rights organizations to have this conversation, that to me, I just felt really encouraged. So that was so exciting as a way to mark Women’s History Month.

Raquel Rosa:

I love it. And I’m sure that young Michelle at the beginning of her career is very proud of you. I know that Young Raquel is very proud of us. So yay.

Michelle Bishop:

That’s Raquel. Started from the bottom. Now we’re here.

Raquel Rosa:

Yes, yes.

Michelle Bishop:

That might have to suffice as the joke for this month. That might be as good as it gets. I’m realizing now how hard it is to have a joke prepared every month. I don’t think I can pick on Stephanie for this anymore.

Raquel Rosa:

Stephanie, you are missed and we will see you very soon.

Michelle Bishop:

All right, everyone, we hope you enjoyed that episode. As always, you can reach us at [email protected], especially if you have ideas for future topics that you want to hear covered on the podcast. If there’s something that you want us to talk about, guests you want us to have, we would love to hear it. You get to talk now, Jack, you don’t have to just listen. Do you want to let the people know where they can find us on social media?

Jack Rosen:

Thanks, Michelle. And you can follow us at NDRN Advocates on Twitter and Instagram, on Facebook and LinkedIn at the National Disability Rights Network. And you can follow us on TikTok even though we will never post there. Until next time, folks.

On this episode of National Disability Radio we sit down with author Jules Sherred, who wrote the cookbook “Crip Up the Kitchen” about how he rediscovered his love of cooking after finding a way to make it accessible. Then we are joined by Natalie Alden from Disability Rights Florida, who speaks about her experiences traveling as a person with a disability. Finally, Stephanie tries a new joke format.

See more of Jules’s writing, including where to purchase “Crip Up the Kitchen” at https://julessherred.com/

Full transcript of this episode is available at https://www.ndrn.org/resource/ndr-december23/

Transcript:

Stephanie Flynt:

Is that our cold open? I thought it had to be longer than 30 seconds.

Michelle Bishop:

Well, welcome back to National Disability Radio, NDR. Woo! Jack, put an applause in there. Woo!

All right, so welcome to our amazing holiday special. Happy holidays, everyone. At this time of year, there’s what, at least 20 different holidays going on? So whatever it is that you celebrate, happy holidays. I am one-third of your hosting team, Michelle Bishop. I’m the Voter Access and Engagement Manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, Public Policy Analyst at NDRN, and I’m also one of your co-hosts. And you know what I can’t stand? The “All I Want for Christmas Is You” song by Mariah Carey. If I have to hear that song one more time…

Michelle Bishop:

Stephanie coming in hot. How could you say that? It’s a classic!

Stephanie Flynt:

The people need to know how I feel.

Michelle Bishop:

I don’t know that they do. Oh, no.

Stephanie Flynt:

Yes, they do.

Michelle Bishop:

Do not send hate mail to [email protected], please. But while we’re on the topic, I think “Santa Baby” is creepy. Anyway, Raquel, take it away.

Stephanie Flynt:

It is though.

Raquel Rosa:

Hey, everyone. This is Raquel. I am back from being sick. So for the better or worse of it, I no longer sound like Marge Simpson and her sisters. And I’m Team Stephanie; I also don’t like “All I Want for Christmas Is You.” And if you want to send hate mail, the email is [email protected].

Stephanie Flynt:

Yes!

Michelle Bishop:

You know what? That’s it. Cut recording. Cut recording. I’m too upset. I can’t go on because I love that song. Jack, well actually, first, Jack, introduce yourself as our producer and then just go ahead and just cut. This episode’s canceled.

Stephanie Flynt:

No. Tell us your opinion on “All I Want for Christmas Is You,” okay?

Jack Rosen:

My opinion is that I’m Jewish. Hi. Producer Jack Rosen here. And since this will be coming out the week of, wishing all of our listeners a happy Hanukkah.

Michelle Bishop:

Yes, happy Hanukkah to you, Jack, and to all of our listeners. So this is our big holiday special. So what do we have on tap, Jack? Who do we have for this episode?

Jack Rosen:

First up, we have Jules Sherred, who is a cookbook author from Canada. He wrote about how he rediscovered his love of cooking and made the kitchen accessible to him. And Raquel, who is our spotlight story today?

Raquel Rosa:

Well, we are in for a treat. We have Natalie Alden from Disability Rights Florida. She’s going to talk to us about traveling while disabled.

Stephanie Flynt:

Well, first and foremost, Jules, we are super excited to have you on our podcast today. How you doing?

Jules Sherred:

I am doing great and I’m excited to be here too.

Stephanie Flynt:

Awesome, awesome. So I guess my first question for you, especially somebody who also really has a love for cooking as well, something that I’m super passionate about, how did you rediscover your love of cooking?

Jules Sherred:

What happened was for a long time because of how my disabilities progressed, I could not cook. And I used to spend five-plus hours cooking for myself and people that I love. It was my joy and the way I would de-stress. And so I watched a video of another cookbook author using an Instapot and talking about how Instapot had helped her manage cooking with rheumatoid arthritis and parts of my disability mimic rheumatoid arthritis. They’re very similar in how they work as far as pain and inflammatory responses and mobility issues.

And before that, my exposure to the Instapot was people telling me how much I needed one and then 10 minutes of them ranting about all the things that they hated about it. And I’m like, “That’s not a way to get me to use the tool,” but I saw this person actually talk about things. I’m like, “Wow. That, I need.”

So I got one and instantly it revolutionized my cooking and made cooking accessible to me. And then I started to experiment and develop recipes specifically for the Instapot as well as play with other tools that able-bodied people typically poo-poo and act like they are not good tools that are amazing for disability, but no one ever talks about them in terms of an accessibility device. They all just either talk about how they don’t like it or how it makes somebody lazy to use something like this or they don’t understand why this tool exists.

And so just over time, I just began to play with things. And as I developed my blog, Disabled Kitchen and Garden, I wrote a post one day with my favorite accessibility tools in the kitchen, and then some people in the comments left their own things that they use in the kitchen that they use not as prescribed. And an example of that that I talk about in my cookbook is an egg multi-slicer that can also be used to chop things like strawberries and mushrooms with soft skin and stuff like that. That’s how it all started.

Michelle Bishop:

So Jules, I have to ask because I am a spoonie myself, and if our listeners aren’t familiar with the idea of spoonies, we are disabled people for whom chronic pain is a regular part of our disability experience. I know that’s something you talk about in your work. And so I was wondering what does replenishing your spoons look like for you and how is that something that you’re able to prioritize, that kind of self-care, in a society that puts such a heavy emphasis on productivity and some of those really ableist kind of ideals?

Jules Sherred:

My go-to is doing flat happy on the couch with my dogs. Flat happy is not really napping, though it’s supposed to be napping, but it’s just lying down, cuddling with my dogs, watching something on television, doing something that requires absolutely no effort and no thought because my spoons are both fatigue-related and pain-related. And as people who deal with both, they know that is a circular, that’s the word I’m looking for, is a circular process where your pain makes you more fatigued and your fatigue makes your pain levels higher and you have to cut that circuit.

So I do things that require absolutely no effort and just make me happy. But that’s just my number one is just vegging out and doing nothing and feeling great about doing nothing. Even reading requires too much energy to do, so it’s all about things that I can do passively and boost my serotonin and hormone levels.

But to go even further than that, I have a system where I check in with my body three times a day and I base my activities off of what my body is telling me I’m at. So I assess my spoons when I begin my workday, I assess my spoons again at lunchtime, and then I assess them a third time at the end of my workday. And the goal is to have one spoon left at my end of my workday. And if I find that I only have one spoon left at my lunch, then I’m done for the day and I do some type of self-care.

And the reason for that, and I found, and this is how I was able to get over, because for the longest time, I was like, “You have to work, work, work, work, work, work, work. You have to overcome, you have to power through. If you don’t, you’re lazy,” all that ableist messaging, I found that I started to keep a journal of all the times I would stop working when my body told me to and how productive that made me compared to when I would just plow through. And I could see that taking breaks when my body said, “Take a break,” even if I was technically on a time sheet working less hours, I was actually getting more done because I wasn’t making mistakes, I wasn’t spending two hours on a task that would normally be 10 minutes if I was feeling better. And that’s how I’m able to be like, “Wow, so this actually works.”

And then I started to notice that all the self-care time that I would have to take throughout the week equaled one full work day. So I started taking a four-day work week and I’m even more productive now that I’m doing a four-day work week, and I understand that is a privilege that I have because I am self-employed. So my advice is if you have that capacity or that ability to set your own working hours and be flexible, I highly recommend doing less work time because you’ll end up doing more in that time that you are on the clock, so to speak.

Michelle Bishop:

Thank you, Jules, I really appreciate that because cooking, which we’re talking about today, requires spoons. So does entertaining for the holidays, so I love that that’s something that you think about and integrate into your work. And for any of our listeners who maybe aren’t familiar with spoon theory, we can put some links for you in the show notes so you can learn more.

Jack Rosen:

And another thing that cooking can require for some people with disabilities is accessibility. I know that’s something you touched on in your book, so I’m wondering how did you incorporate universal design into this cookbook?

Jules Sherred:

When I was creating the cookbook, I tried my best, with the help of beta readers and other disabled people, talking with them, having conversations about what are their most common points of failure in the cooking process. And so one of the things that I did is I created recipes that address those points of failure and eliminated them. So some examples of that are complete equipment lists because for people who have different types of cognitive dysfunction, the process of trying to figure out what they need to cook together with equipment, that step alone can take them upwards of two hours, and then they forget something and it derails them during the cooking process, and then the food gets ruined, and then it’s a whole snowball effect.

I also simplify the instructions so that there’s no hidden steps because that’s another stumbling point. The way that ingredients are listed is also done with universal design in mind, but there’s also some how to organize your kitchen that consider both mobility issues and cognitive impairment, simple things. And again, this is having to overcome… That’s not the word I wanted to use. That’s a horrible use. Pushing back against those ableist messages that your house needs to be super neat and tidy and everything needs to be put away. And if it’s in sight, it’s cluttered and you’re a bad housekeeper.

The fact is, if you keep something in sight, you’re more likely to use it, you’re going to save spoons. And so I recommend your frequently used utensils and small appliances, you keep those things out at the point of performance. So it’s all about your point of performance, eliminating steps so that you’re not having to work as often, and things like doing food prep so that you’re only having to do it a couple times a month instead of that once-a-week food prep that people espouse that’s a recipe for you just to throw everything in the bin because you have no energy to cook that stuff that’s all chopped in your fridge, completely filled in Tupperware containers.

So those are some examples where I looked at not only the common stumbling blocks, but also the common symptoms of disabilities. So instead of focusing, say on arthritis or MS or ADHD or autism, I asked myself, what are the common symptoms? Pain, fatigue, cognitive dysfunction are the three main ones, but there’s some others that I address in the cookbook as well, and how do we create strategies and techniques to, again, cut that circuit of what causes all those things to flare up, and create strategies to support those rather than frustrate them.

Stephanie Flynt:

Yeah, no, that makes a whole lot of sense and thank you so much for talking about the tools and being able to organize those and those various techniques.

Another thing that I’d love to address is the low expectations portion of it and just being nervous about cooking. When you hear about cooking, and it’s like we were talking about a little bit earlier prior to this episode, it’s such a broad thing. And so when you think of cooking or when some people think of cooking, especially when you’re looking at low expectations that the disability community is subjected to or even just, “What if I can’t do this because of how I’m feeling today?” So I was wondering if you could offer some advice to disabled people who are interested in starting to teach themselves how to cook or even just learning how to cook in general.

Jules Sherred:

My first recommendation is to start small. I’m going to tell a story that has to do with confidence and creating healthy attitudes around food and how this works in Canadian culture, and I think it’s taught to some degree in American culture. But the sooner that you teach a child to cook and give them independence in the kitchen, the more confident they become because they have these little wins of I look at this thing that I made on my own, a sense of accomplishment, and it just boosts your self-esteem. Cooking, having the independence is a huge factor when it comes to mental health and self-esteem because you are winning, you are creating some type of, “Wow, I made this thing.”

So it’s about starting off small and setting yourself up for success and ignoring the things that may dissuade you from doing that. So don’t chop all your vegetables. Buy pre-chopped vegetables from the frozen food section because they’re actually healthier than the vegetables that are in the fresh food section because frozen food is flash frozen at the time of picking; fresh vegetables are dying and losing nutrients as they sit in that area. So you’re actually being kinder to your body by going to the frozen food section and you’re saving money. So that’s a barrier that you can eliminate.

Find recipes for, again, the Instapot, one of the reasons why I love it is because you can just dump a bunch of ingredients in it, put on the lid, set a timer, and you have succeeded in making yourself a delicious meal that has taken you no effort. There’s one recipe in my book that makes a delicious coconut tomato soup and it’s like five minutes. You open up a can of diced tomatoes, you add some onion, and you add a spice mix, you set the lid, and you’re done. Easy-peasy and you’ve made yourself delicious soup. I think there’s like eight servings of it and it’s an easy, quick win.

I think those are the biggest things. Start small and do what you need to do to eliminate the barriers that typically get in the way, and a lot of that for disabled people has to do with how much time it takes to prepare meals. Even something like using a meal kit is overwhelming because sure, all the vegetables are chopped for you, but you still have to stand at the stove for half an hour to one hour. And a lot of us do not have that capacity either because we literally cannot stand and a stove is too high to use in our wheelchair or we have some type of pain condition that prevents us from doing something “that simple.” And I have “that simple” in quotation marks like air quotes because it isn’t that simple.

Stephanie Flynt:

Oh my goodness. Thank you so much for sharing that with us and now I’m really hungry, so also thanks for that. But seriously, that is super, super helpful. And I know for me personally growing up, I definitely found a lot of those things super helpful. When I was a kid, I would make things like salsa in the kitchen and I’m so grateful that my parents encouraged age-appropriate exploration in the kitchen, so I love that you spotlighted that.

Michelle Bishop:

Well, we’ve talked about some pretty serious disability stuff, which is what we tend to do on this podcast, but this is also our holiday special, so we were wondering if you have a favorite holiday recipe you could recommend for us.

Jules Sherred:

In my cookbook is a recipe for air fryer potato scones and mashed potatoes scones. So the reason we typically make them, they’re a Scottish recipe that come from my Scottish heritage on my maternal grandmother’s side, and you make them with leftover mashed potatoes, and leftover mashed potatoes is probably a word up here like, “Jules, that does not exist. What are you talking about?” But you are making mashed potatoes anyways for the holiday meals, so make an extra half a bag or something and intentionally make those leftover mashed potatoes.

And a scone, for people who don’t know because it’s kind of like a biscuit, biscuits are cookies in Canada, they’re a hard cookie. It’s not that scones and biscuits are the same, but they’re very similar. But the thing with this scone is that it’s a dessert scone and you serve it hot fresh out of the oven and you slather it in butter or margarine or whatever you want to slather it in, and then you pour maple syrup, hot, warm maple syrup on top of it, but you could also do jam on top of it is another really good thing.

But it’s a dessert scone and if you wanted, you could also make it savory by if you have any bacon bits left over from either making your stuffing or your Caesar salad or whatever, you can throw some bacon bits and some chives or green onion, the greens on the green onion in there and make a savory version of it. And it is delicious and you really wouldn’t think that you put mashed potatoes in something that is supposed to be served sweet, but trust me, it works.

Michelle Bishop:

I love mashed potatoes. That’s my favorite thing to have at Thanksgiving. So you’re speaking directly to my soul right now, Jules. I will put mashed potatoes in any recipe, so I’ll be sure to go check that out.

Jack Rosen:

Well, Jules, you’ve given us a lot to think about. You’ve also made us a bit hungry or at least speaking for myself there. Thank you.

Michelle Bishop:

Starving. Absolutely starving right now. Definitely about to eat some mashed potatoes. Sorry, Jack. Go on.

Jack Rosen:

No, it’s fine. Thank you for taking the time to meet with us today and where can folks find more of your stuff?

Jules Sherred:

First, it’s been a pleasure being here, and if you want to go to julessherred.com, J-U-L-E-S-S-H-E-R-R-E-D dot com, you can find information to buy my book, Around the World. I also have a blog and there’s links to my social media and my other websites and everything. It’s like my online author hub is the best place to go.

Jack Rosen:

We’ll be sure to include that in the show notes. Thank you so much for joining us today, Jules.

Jules Sherred:

My pleasure.

Raquel Rosa:

All right, everyone. It is holiday time. We’re talking turkey, we’re talking Christmas, we’re talking menorahs. So now we’ve got people who are flying to visit family and friends, and this experience also includes people with disabilities. Today we have a wonderful guest who is going to talk to us about the highways and byways and airways of travel while being disabled.

Hi, Natalie. How’s it going?

Natalie Alden:

It’s going really well, going really well. Looking forward to the holiday season.

Raquel Rosa:

Yes. Can you just tell us who you are, introduce yourself, and a little bit about you?

Natalie Alden:

Of course, my name is Natalie Alden and I am a C5 quadriplegic and I use a power wheelchair. I was actually disabled at the age of 16, so I’ve been in this chair for quite a long time. I currently work at Disability Rights Florida, and I’ve been here 19 years. I primarily work right now on our representative payee program, which includes an extensive amount of travel. In this month alone, I think there’s one week I’ll actually be home. And so it’s a very rewarding job and I’ve actually been able to work on multiple parts of our agency and probably under every single grant that we have.

Raquel Rosa:

Yes, definitely a shining star at Disability Rights Florida. Natalie, just for bonus information, what do you do when you are not saving the world?

Natalie Alden:

Oh, so I am active with a lot of my city entities. I actually sit on the Mayor’s Disability Council. I also worked a lot with adaptive recreational and sports. I love to garden, I love to sew with my sewing machine, and I like to hang out with my five-year-old granddaughter.

Raquel Rosa:

Wonderful. So Natalie, as you mentioned earlier, you travel extensively. I know that you have been in Florida for a very long time and you’ve lived other places as well. I was hoping that you could talk to us a little bit about what your overall travel experience has been like. What method do you prefer? What have been some real successes? What have been some real bummers? Let’s start there.

Natalie Alden:

So I would say that overall, I do prefer to drive. I think that being somebody who has a very severe disability, but being able to have that control over going from point A to point B is my favorite mode of transportation. But of course, you can’t always drive where you want to go unless you want to take four days to get there. So of course, flying is one of those methods that is an essential at some moments in time. I’ve had some really good experiences and I’ve had some really poor experiences.

I used to live in Colorado and I know that back when my oldest son, oh, I think he was just a little over a year old and we had to fly from Colorado to Jacksonville, and driving with a power chair is one thing; driving with a power chair and a baby is way, way out there. I know that you see the accommodations and all of that, and I think knowing your rights show you more on what you can and can’t do.

I know I have a tendency to always gate-check my chair just because of the fact that I want to make sure that I have the most access to it. And when you have an impairment like mine, you are always the first person on the plane. They always want to make sure you’re getting down there first and you have plenty of time to get on there. I’ve traveled with PCA’s and I’ve traveled on my own. There’s good and bad points to that depending on the airline.

I would say in general, my experience with flying is that I’m only going to do it if I absolutely have to. I kind of don’t like to do traveling, especially in the holiday season, on a plane because one, you have more overcrowding, you have more overbooked airlines, and so I would just say be very picky and choosy if you do plan on doing it.

And pre-planning is essential. I think knowing exactly what’s going to happen, talking to the airline, making sure they’re understanding that you use a power wheelchair, of course they’re always going to ask you about the batteries. I always say if you can, have somebody take their phone or a camera and just do a walk around of your chair right prior to getting on the plane so that you have a digital recording of if your chair’s in really good shape or bad shape or whatever because that’s going to help you if something happens to your chair afterwards.

When you first go up to the desk and they look at your chair, some airlines are going to really look at your chair and they are going to write down anything that might be wrong with it if they can actually tell. What you don’t want happening is somebody who doesn’t say anything and they want to argue with you afterwards that maybe the damage was there beforehand. So I think it’s very critical to make sure you are getting some kind of digital record of the condition of your chair.

And then part of it is a preference on whether or not you want to get somebody to actually put you in that Hannibal Lecter chair, as I call it, from your chair to the actual seat. I know that I have PCAs that have traveled with me that simply they will just pick me up like a baby doll and put me all the way in my chair. But of course, if you’re going by yourself, you’re going to utilize the staff, the employees there, and communication is going to be your best thing on trying to get transferred to and from your chair into the seat that they give you.

And I think that’s also why you really want to make sure you’re contacting them ahead of time. I find if you’re really nice to the person who talks to you, even on airlines that don’t have preferred seating, they will really try to get you into a bulkhead seat or something where it’s going to be easier to do that transfer. A spoonful of sugar does go a long, long way.

And so I know that I did have the opportunity to travel all the way to Ireland on vacation one time, and that was a very long flight, and I think it’s very doable for people to be able to do things like that, but in the same breath, you have to be proactive. I’m very lucky because of the fact that I do have a drainage bag, so I didn’t have to worry about actually having to be transferred or for somebody to carry me to the restroom that probably is not going to be accessible enough for me anyways. So I do tell people that if you’re going to be traveling, feel free to bring a urinal or something.

I know one of the things many people with disabilities have a tendency to do is be like, “Well, I don’t want people to see that,” or, “I don’t want to…” I really say, “Embrace your disability, really embrace it.” It doesn’t matter. It’s a part of making it where you can be as independent as possible. And if me bringing a urinal on the plane is what I need, then that’s what I need. But I can go further and further on this, but I will go ahead and put it back to Raquel right now.

Raquel Rosa:

Those are really great tips. I think there’s a lot that I know it’s new to me. I think there’s a lot that is going to be new to a lot of our listeners. Really fantastic tips. I love the gate-checking. I love the video piece. Self-advocacy, holy cow. I mean, I already know about that part, but I’m just saying that how important it is to speak up and keep that accountability present, that’s the secret sauce, Natalie. That’s it.

I’m going to actually pitch it over to Stephanie because I’m sure she’s got a couple of questions for you as well.

Stephanie Flynt:

Yeah, no, absolutely. And Natalie, thank you so much for sharing your experience with us when it comes to traveling with planes, trains, and automobiles and all of the things.

I think that one thing that really has been demonstrated is that when it comes to individuals with disabilities, one size doesn’t fit all when it comes to traveling. Some things may work for some people and some things may work for others. And then also too, when we have these conversations, we’re able to maybe take different tips that other folks have that may work well for us. But yeah, no, thank you so, so much for sharing with us today.

I’m trying to think if I… Sorry, guys. I’m trying to think if I have any questions. I feel kind of bad, but I feel like you’ve covered all of the good things.

I guess maybe a question that I have for you, and I know flying can definitely have its challenges, its difficulties, and you’ve definitely covered some of the challenges and difficulties and how you’ve gone about advocating for yourself when it comes to flying and different things. And I don’t know, I feel like sometimes we need to hear some positive experiences when it comes to traveling through the holidays. I know for me personally, sometimes I get super anxious about what kind of person I’m going to get at TSA. Are they going to try to over-assist me? Are they going to try to test my boundaries?

Just for some context, I think most of our listeners know, I’m a blind person, and so sometimes people might, say for example, try to grab me in the middle of the security line and I’m like, “Hey, can you ask? Don’t grab me. Can you please tell me where exactly you’d like me to go in terms of Z, Y, X and X, Y, Z versus grabbing me and trying to pull me one place and then another, and then another. Let’s treat people with disabilities like humans.”

But I guess this is a long-winded way of saying, could you tell us about one of your positive experiences just so that we can kind of… I don’t know, I think that might be helpful for folks traveling over the holidays who may be anxious about the whole ordeal. Of course, we do have negative experiences. No experience in terms of traveling and flying with a disability is going to be perfect, but that doesn’t mean that you’re always going to have bad experiences all the time, even though we have both types, right?

Natalie Alden:

Yeah, and I definitely can. I know that one of my fondest memories was actually on a Southwest airline when they got me. I was down, I was flying by myself, and they got me on the plane and the steward, he actually kneeled down so that he could see me eye to eye. And he asked me, he’s like, “Hey, I just wanted to have a conversation with you and ask you if anything happened to go wrong in the plane, would it be okay if I just grabbed you,” and he was showing me underneath my arms, “and pulled you off the plane if there happens to be an emergency? I just want to make sure that there’s not going to be an issue with that.” And I was so happy about the fact that you actually had somebody who not only was very good about disability etiquette, didn’t just stand and tower over me, but actually kneeled down to my level and then wanted to have a conversation about what was going to make me comfortable getting me off the plane in an emergency.

Of course I told him, I said, “I really don’t care how you get me off the plane as long as you get me off the plane,” but it’s great when you have people that actually want to take that time to make sure that you’re going to be okay. And that particular steward, I made sure, because he was so accommodating during the whole time on the plane, making sure I was taken care of because I was flying by myself, he wanted to make sure that the landing was going to be okay for me, and I actually made sure that when I got off the plane, I found a manager for Southwest and let them know, “Hey, this particular individual went above and beyond. You’ve got ADA, and then you’ve got what is a human reaction to it. We want something that’s more practical. And he did that.”

And I was told that when you do give them those kudos like that, they do get bonuses, so I was really happy to hear that also.

Stephanie Flynt:

Yeah, absolutely. Absolutely. I think it’s so important that when folks are doing a good job, I definitely try to go out of my way when it comes to airlines for folks that are doing a good job to let those airlines know like, “Hey, this is how it should be done. Keep it up.” The fact that that person asked you versus just assuming, I personally would’ve maybe been startled if someone just randomly came over to me and grabbed me out of my seat, tried to get me off a plane, even if it was an emergency, which could be more startling just depending on the circumstance. But the fact that he was willing to talk with you about your needs, and I think that’s just a perfect demonstration about how one size doesn’t fit all. And thankfully he got that, and I’m totally here for that. That’s awesome.

Natalie Alden:

Well, and I think that as a person with a disability, whether I’ve been traveling alone or whether I’ve been traveling with a PCA or family, I always want to make sure that I’m taking a really good active role in what’s going on. And so when I’m being gate-checked, I’m gate-checking my chair, it ends up where I’m letting the stewardess know, or whoever it is that’s out there, that if they have any problems, that this is my phone number. I try to make sure that my PCA puts my chair into the position that I know is going to be the most helpful for the people who are putting my chair onto the plane. And I think that if you try to make sure you have that good communication back and forth, they are going to make sure that they’re taking care of your property better.

So it’s just one of those things that we kind of think that the people doing stuff for us know how to do something better, and they may not, and we should never be too shy or too much, “Oh, well, they’re doing their job,” to take the time to say, “no, I want to make sure you’re doing it correctly.”

I know I had an instance once when I was on one of the planes and my PCA was like, this is before we took off, my PCA is looking out the window and literally tells me that it looks like they’re trying to rip my chair apart in order to get it on the plane. And I immediately was yelling for the stewardess and letting her know, “Hey, that’s a $35,000 piece of equipment that they’re about to break.” And immediately she said, “Hey, everybody’s walking away from your chair.” So they evidently radioed down very quickly and the guy came all the way up, spoke to me about my chair, and then made sure that it was placed on there properly.

But had I not taken the stance of saying, “Hey, wait a minute, I see what you’re doing and you need to do it better…” We need to educate people one at a time, and we need to make sure that we’re doing it in a way where you’re being respectful because I think if you’re not, then they’re not going to listen to you.

Stephanie Flynt:

Yeah, absolutely. I feel like sometimes we can get lost in the customer service shuffle at that point, especially around the holidays. Airlines definitely deal with a lot of angry people around the holiday, angry people in general, but especially around the holidays. And if we can try… And again, I’m not saying that people with disabilities have to be perfect little advocates all the time. When I have 6:00 AM flights, I better have coffee or I am not the happiest person.

But all that to be said, the littlest things, like educating one person and advocating for yourself to one person who may understand because of your advocacy, later on, the littlest things just they make the biggest differences. And that’s something that I always try to tell people, even if it doesn’t seem like it, educating one person, whether it’s an airline attendant or someone at the grocery store about disability etiquette and doing it in a respectful way, if you absolutely can, that really can make such a big difference for other folks down the road

Natalie Alden:

Well, and I’ll give you a thing. I was actually at a layover in between my destination. Hold on a second.

I was actually at a layover in between destinations, and when I had gotten off the plane and they put me into my power chair, I went over to the new place where I was going to be getting onto the new plane, and I made sure I spoke with somebody at the desk and very much was like, “Hey, I just want to make sure you know that I’m here and please let me know if you need me somewhere certain because I know the airport’s really crazy right now.” And she was like, “Oh, no problem, no problem.”

And then probably maybe like 10, 15 minutes later, she came over to me and told me, “Hey, they’re actually going to be delaying this flight and they’re going to make everybody try to get a different flight. I’m letting you know this first so that you can call this number,” and she gave me a phone number and she said, “and they will go ahead and get you onto the next soonest flight.” And so she gave me that information, told me where to go to call before she announced it to everybody else that was sitting there waiting for the same flight.

I do say being a little bit more respectful and trying to be a little proactive really ended up helping me because I was one of the few people that was able to get on a sooner flight, and I only ended up having to wait approximately 45 minutes where some people were having to wait four and five hours. So it is that education and it is being proactive that can really make it where you go from having a bad time flying to an “I’m okay” flying.

Stephanie Flynt:

Absolutely.

Natalie Alden:

And I know that you guys were talking about other forms of transportation. I will say that I have been able to do the Auto Train on Amtrak from Sanford, Florida up to Lorton, Virginia. I really think that it’s that same thing of being able to talk to someone, telling somebody, “This is my disability, this is what I need for assistance.” They ended up getting me into a sleeper car, and it was really a great, great experience for me.

I will tell you, if you are ever doing that and you are able to get the sleeper car, it is very accessible for someone like me. And like I said, I’m a C5 quad. I’m a full transfer. I will say that whoever is going with you, if you have a PCA, they will have to be able to climb up for the bunk bed. But hey, it was a good experience though.

And so I think though, no matter what you’re doing, you really have to make sure that you’re doing a lot of pre-planning. I know a lot of people that don’t have disabilities don’t have to think about those things, and you’re kind of like, “Hey, this is extra,” but at the end of the day, it can make the difference between you having a very good experience or you having a very bad experience no matter what form of transportation you are having.

Stephanie Flynt:

Absolutely. Definitely can save you a lot of heartache, even though it seems like a lot of stuff that you have to do on the backend. But yeah, I definitely would agree with that.

Oh my goodness. Natalie, thank you so much for sharing with us today about your travel experiences, just everyone getting ready for the holidays and traveling home. I know that I personally found them super insightful, and I’m sure that our listeners have also found those experiences insightful as well. So yeah, thank you so, so much for sharing with us today.

Michelle Bishop:

Wow, that was amazing. I am inspired and so excited for the holidays. Why don’t we go ahead and close out this episode with “All I Want for Christmas Is You” because I’ve heard it’s Stephanie’s favorite song and that’s how I’m going to remember that forever?

Stephanie Flynt:

Nope.

Michelle Bishop:

Oh, wait. Before we get to that Stephanie, do you have a holiday-themed joke for us?

Stephanie Flynt:

I mean, I started thinking about it and since Michelle doesn’t like my jokes as much, I’ve decided to do something different for Christmas and give her an early Christmas present. It’s a haiku!

Michelle Bishop:

It’s a haiku? Oh, this is going to be… All right.

Stephanie Flynt:

All right. Everybody needs to get their Starbucks holiday cups. This is very important, very important PSA.

Michelle Bishop:

I’m so worried. Go on.

Stephanie Flynt:

Caffeine is important, necessary for me to function. Drink coffee now, or go caffeinate now.

Man, I messed up my own haiku. I guess I… Oops, oops. Happy holidays, y’all. Sorry I messed up the haiku. Please don’t send us hate mail for that.

Michelle Bishop:

[email protected]. Jack, how can the people find us on social media?

Jack Rosen:

Log off social media. Spend time with your family.

We’ve got a new name, National Disability Radio! But the hosting team is still here, and we aren’t giving up on the puns. And of course since it’s November we are talking all things voting. NDRN’s Voter Engagement Specialist Monica Wiley joins us on this.

Full transcript available at https://www.ndrn.org/resource/ndr-nov23/

Michelle Bishop:

All right. Sorry. Are we ready? You ready for us, Jack?

Jack Rosen:

I started recording already.

Michelle Bishop:

All right. Well, snarky, but all right. Okay, I’ll get started. Hello everyone. And Stephanie, can I get a drum roll real quick? Hit me with a drum roll.

Stephanie Flynt:

I don’t have a drum.

Michelle Bishop:

Oh, no.

Stephanie Flynt:

But I have a dog who wags her tail. Okay [inaudible 00:00:17].

Michelle Bishop:

That works. No one can see it.

Stephanie Flynt:

I can’t see it. Okay.

Michelle Bishop:

Okay. We didn’t prepare. We didn’t prepare. Welcome to the new and improved National Disability Radio, NDR.

Stephanie Flynt:

Not to be confused with NPR.

Michelle Bishop:

We are going to get sued for this. So welcome to NDR. I am one of your hosts. Michelle Bishop, the voter access and engagement manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, Public Policy Analyst at NDRN.

Michelle Bishop:

Raquel Rosa is doing a lot better. I’m sure you heard she was sick last time, but her voice is still taking a little bit of a hit. So she’s still on break this month. We miss you, Raquel. Get better. Have all the cough drops or slushies. Eat slushies instead. That sounds better.

Stephanie Flynt:

And hot tea.

Michelle Bishop:

What? Oh, hot tea. That’s right. Hot tea sounds more responsible than a slushy, but one sounds more fun, so you make your choice, Raquel. And of course, I would never, ever forget to introduce our producer and showrunner, Jack Rosen. Jack, introduce yourself to people.

Jack Rosen:

Hi, you all. It is producer Jack Rosen here. Michelle, do you want to tell the people what today’s episode is about?

Michelle Bishop:

So today, we are like one year out from, you might’ve heard this, there’s going to be a little election happening for the president of the United States in 2024. Just that. Nothing huge and really important that we need to start talking about. So today, we’re going to start talking about getting ready for the 2024 election and what you can be doing to make sure you and all of your community are ready to go and vote.

Our guests is actually our very own voter engagement specialist at NDRN, Monica Wiley. Monica has over 15 years of experience as an advisor on disability and organizational and relationship management in the public and private sector, working with state government and federal organizations, including the White House on protecting and advancing the rights of people with disabilities and other represented communities.

She comes to us as someone who is passionate about the vote and working on NDRN’s role in directly outreaching to and engaging all types of voters with disabilities from the broad diverse disability community. So Monica, welcome. Thank you so much for joining us this month. We’re so excited to have you.

Monica Wiley:

Thank you for having me. I’m glad to be here.

Michelle Bishop:

First, to get us started, can you just tell us why are you so passionate about voting?

Monica Wiley:

Well, again, thank you so much for having me. I’m truly delighted to be here and to talk about this. This is very important to me and I thank you for the question.

The reason why I am so passionate about voting, it comes to me in three different ways. And the first reason is I’m a person with a physical disability. I walk with a cane and I use a travel scooter for long distance walking and it was caused by a drunk driver, tractor trailer accident that I was involved in at the age of nine that killed my entire family. And as a result of that, I now have a disability, so I am in the disability community.

When I graduated from college, I was open to or became aware of so many challenges and barriers to people with disabilities in terms of employment, access, socially, everything. And for me, that spoke a lot of volumes to me as a woman, as a Black woman, because as a Black woman, the rights of voting is very, very important to my community and definitely important to women, but especially to my community. And I come from a background where voting, we were disenfranchised by voting because of us being African-Americans in the country.

And so I stand on the shoulders of so many people that have paved the way to make sure that we have voting rights as African-Americans in the community. So that is one reason. So I stand on the shoulders of individuals like my shero, Fannie Lou Hamer, and some of the others that are my shero, Judith Heumann, which I will probably talk about a little bit later. And so many others that have really just made a way for us in terms of one being Black and two being a person with a disability, which leads to my second reason that fuels my passion for voting.

My second reason is the access. There are so many barriers to voting and my community, our community, tends to be… we’re considered as afterthoughts. We’re not considered as individuals that engage in voting, that are knowledgeable about voting. And that is just a misconceived notion about my community. But the reason why that notion is there is because of so many of the barriers to voting.

And so I wake up every day wondering what do I need to do? How can I be a vehicle, a beacon for paving the way for greater access to the voter ballot, but then also making sure that the crosses of the community is educated, that they’re aware, and that they can be a part of the political process, a part of exercising their voice at the voting ballot. So that is the second reason.

Then the third reason is a person that I just mentioned, which is Judith Heumann and how she didn’t let anything stop her. She was a fierce woman, a fierce leader. And I share those same attributes, those same qualities, those same desires, that I’m not going to let anyone, not any institution, any law, or any of these so-called made up policies to prevent me and my community from having the ability to vote.

So those are the three reasons why I am so passionate and so dedicated to making sure that we have full access to the voting ballot and especially Blacks and Black individuals with disabilities to make sure that we are educated, we are knowledgeable, and that we’re doing everything that we can to exercise our voice in our vote at the voting ballot.

Jack Rosen:

And Monica, I’m wondering how can the organizations, especially non disability focused organizations, do more to help activate our voters?

Monica Wiley:

I love this question. Thank you for this question. I think it’s several ways and several reasons why we should definitely be partnering and building coalitions outside of our community. Well, for one, if you are a young person with a disability who just graduated from college and is ready to make meaningful impact, meaningful impact and policy, meaningful impact and laws, meaningful impact and community engagement, you may be often wondering, “Well, what do I need to do? How should I start this? What avenues are out here for me to be able to do this?”

I was one of those individuals, and the first thing I would say is that I would recommend, one, that a person with a disability attends events that are not disability focused. So we need to have more of a presence in other types of events, other community engagement events, other community related events. Also connect with individuals and different groups that you are involved in, making sure that you talk about people with disabilities and talk about how it is so important for other organizations to look at us, to invest in us.

And also too, I think one of the things that I tend to use in terms of building that and establishing those bridges and those partnerships and those connections, is making sure that when I am attending different events and when I am talking to individuals, I make sure that they see two things. One is, of course, yes, you do see the disability because mine is physical, of course. But you see the disability and even if you have a non-visible disability, because I believe one in four have non-visible disabilities, make sure that you talk about it, be proud of it. Disability isn’t abnormal, disability is normal. It is very normal. So make sure that they understand that, that they see that.

So one, that they recognize that you are a proud person with the disability, and then secondly, talk about that disability, talk about how you became disabled, whether you were disabled by… it was developmental, or whether it was by tragedy. But then also then make sure that because they’re still wondering, “Okay, well, what can I do?” Or they may not even have that question. They may just be wondering, “Where’s this conversation going?”

And so then that’s when you will want to make sure that you build on some of the commonalities. We’re both at this event, obviously we have an attraction to this type of work or whatever the subject is or whatever the reason for the event is. So build on that and make them see that there’s some commonalities with people with disabilities and those that are non-disabled. But then also let them see the differences, the challenges, the barriers, and appeal to that, so they can understand and really connect with that humanitarian spirit that they have.

And that’s how you build and that’s how you become engaged and vice versa. And then that makes them want to say, “You know what? I didn’t think of that. That makes great sense. And this is a community that we should be partnering with. This is a community that we should be involved with. We do care. You are a part of the population, you’re a part of the voting block, and you should have access and you should have resources, and you should have individuals that want to help build and support this.”

So that’s what I would say would be a great way, is to make sure that you are out there and that you are visible and that you’re seen. Be proud of what your disability is or how you have the disability. Show the differences between that person or your organization and the organization that you represent, but then also show where the commonalities are and then build on that. And if you’re a person that is new to this and it’s something that you want to do, then build on who you are as a person. Show who you are as a person. Show that confidence and that desire. And then again, you make sure that you show that the connections that you have and then also show those differences. And then making sure that from that point, how you can connect to build greater partnership and be more effective.

So that’s what I would say would be the great way to building this and to make those connections and those partnerships. And trust me, when you do that, that opens the door for so many different resources and opportunities. And again, just forming that partnership and building those relationships, because relationships are definitely key.

Stephanie Flynt:

Oh my goodness. Thank you so much, Monica. We definitely appreciate you for giving us so much insight. And honestly, I don’t think I’m alone in the fact that I genuinely wish that I could be like you when I grow up. So I’m going to continue to aim for this goal. But all that to be said, I know that you briefly touched on this in your answer to the previous question, but would love to hear your advice or your insight on individuals who want to take the leap into helping to organize, helping to get individuals with disabilities, and individuals in disabilities who intersect with multi marginalized communities. How can we support people in terms of organizing to help them get out to vote?

Monica Wiley:

I like that. I like that question. Thank you so much Stephanie, and I really, really appreciate your question. I think one is looking at yourself, obviously, you want to be a part of this work, a part of this effort because you recognize that the fabric of voting and making sure that voting is empowering and that it’s effective and it’s why we are here is to exercise that vote and to make sure that we are speaking up for how we want our lives to be governed, how we want to live, and then how we want to make sure that we embrace everyone from different walks of life. And that’s what that’s about. That’s what humanity is about. But I don’t want to veer off because I can tend to veer off and go a little bit into a rabbit hole.

But I think what I would do is, everyone has some type of leadership ability within their selves. And I think that when we look at the world leadership, we automatically think of, “Oh, I need to be CEO of this organization or head of this organization.” And while you may have that aspiration, and that is something that you are looking forward to, I think in the beginning you can be a leader within your own self by showing up and then showing how you are creating a pipeline for others to be able to use that to then build the next set of leaders and the next set of individuals that have a desire to really make meaningful impact in the world, not just in their respective communities, but just in the world, in the country that we live in.

And so what I would typically say is that I would say when you’re attending these events, make sure that you’re talking to individuals that represent different areas within engagement, different areas within nonprofit, different areas within corporate America, and be taking mental notes, take mental notes. And even if you can’t take mental notes, pull out your phone and take some notes and say, “If you don’t mind, I would like to capture some of what we’re saying here because I’m really dedicated to this. This is something that I’m excited about.”

And when you partner with individuals, when you’re connecting with organizations and people, you’re learning from each other. Everyone doesn’t know everything. And so I can benefit from that person, but that person can also benefit from me. That’s a part of building, that’s a part of growing, that’s also a part of just making a pipeline and an avenue for others to be able to use that and build upon it further so that we can, I would say, reestablish love. I think there’s a lack of love in this country, a lack of love just in the world, period. And if we have that desire to really show love to humanity, then what we should be trying to do is look at some of the qualities within ourselves and the desires within ourselves and bring that to some different events.

Make sure that you are connected to individuals outside of your community, to individuals… So for instance, I have good friends that are in the Asian community, good friends that’s in LGBTIQ+ community. I have friends that are Muslims. I have friends that are in various affinity groups. And then within those affinity groups, they’re connected to different sectors. They’re connected to the union, they’re connected to corporate America, they’re connected to sports, they’re connected to the art world.

And so when you are attending these different events, make sure that you connect with individuals at these events, but then also make sure that you’re connected with individuals that represent different areas within these various sectors and within the events that you are attending. And again, make sure that you take some notes, you write down what you’re here, what you can find beneficial, and that may even be appealing to some people.

I’ve done that before myself, and I’ve had a couple of people say, “Well, you’re writing notes as if you’re in school.” And I said, “Well, you know what? Every event that I attend, every conversation I’m in, it is school, because I’m learning from you and you’re learning from me and that is the best way that we can do… the best way that we can forge a relationship and a partnership and build on this to make an impact for individuals, and make an impact in the world, and make an impact in voting and the work that we do, and the work that we aspire to do.”

So that’s the recommendations that I would give anybody, is to make sure that you are always willing to learn. You’re always open-minded, always willing to learn, be confident and comfortable with what you bring to the table. Even if you don’t have as much experience as everyone else, you have experiences, you have life experiences, you have experiences from college, you have experiences from your friends, you have experiences from… I don’t know if you go to church, from your church, you have something to bring that they can benefit from and you could benefit from.

So build on that and make sure that you are connecting with individuals that represent various positions within various sectors and within community engagement. So I hope that answers your question.

Michelle Bishop:

Monica. Oh my gosh. We appreciate so much your expertise, your fiery personality and your passion for these issues and for the vote, it’s amazing. We are about a year out from this election. I’m already feeling inspired. I echo Stephanie’s thoughts that I want to be you when I grow up. Although I think we all agree at this point. It is unlikely that I’m ever going to grow up, but I still strive for it every day.

Monica, thank you so much for joining us and I bet we’re going to bother you again before this year is out to come talk to us about the election.

Monica Wiley:

No. Thank you. It is been my pleasure. This has been very rewarding. This is something that I love to talk about. As you are aware, I wake up every day wondering, what can I do? What do I need to be doing? What are some of the qualities within myself that I am not utilizing that I should be utilizing to make this impact for my community, for the cross disability community, even for my peers, for the people that I work for, the organization that I work for? What do I need to be doing? And how can that translate into something that’s meaningful and impactful?

So thank you so much for having me. I’ve enjoyed this. I look forward to coming back and I appreciate this. So thank you very much.

Michelle Bishop:

Thanks so much, Monica. Get back to saving the world. And while you do that, we’ll be doing something equally as important. Stephanie, do you have a joke for us this month?

Stephanie Flynt:

I always have a joke, although I really didn’t want to derail us with it. I don’t want to derail us. I don’t want us to get off track.

Michelle Bishop:

This is train puns, isn’t it? Are you doing train puns? I’m so worried about this joke.

Stephanie Flynt:

I don’t know, I don’t know, but I’m trying not to leave the station, if you know what I’m saying, but-

Michelle Bishop:

Oh no. All right.

Stephanie Flynt:

I don’t know if I have a joke this month, but I have more of a question.

Michelle Bishop:

Okay, I’m ready. Jack, are you ready?

Stephanie Flynt:

How do trains indicate when they’re sick?

Jack Rosen:

I don’t know. How?

Michelle Bishop:

Does that have something to do with the choo-choo noise?

Stephanie Flynt:

A choo-choo!

Michelle Bishop:

Oh no. Oh, how many in a row is this that I’ve gotten?

Stephanie Flynt:

I don’t know, but I’ve been doing train puns all week, so you all pray for Jack and Michelle and everyone else at NDRN. They’ve been having to deal with my train puns.

Michelle Bishop:

We had one conversation about trains and we’ve been hearing train puns all week. It is true. And I’m pretty sure I’ve gotten five of these in a row now. I’m going to have to talk to my therapist about that, so.

Stephanie Flynt:

So I’m sorry about the way I’m conducting myself these days. I’m done.

Michelle Bishop:

It just never runs out. Jack, tell the people [inaudible 00:19:41]-

Stephanie Flynt:

Keep chugging along. Okay, I’m done now.

Michelle Bishop:

Tell the people where they can find us on social media.

Jack Rosen:

You can follow us on Twitter, Instagram, Facebook, and LinkedIn, and also Threads, I guess. I did post there the other day, so you can follow us there and you can email us @podcastatndrn.org. Until next time, folks-

Michelle Bishop:

And Threads is totally a thing that I know exists because I’m hip.

Stephanie Flynt:

I’m here for that.

Jack Rosen:

We’re still not on TikTok though. See you.

We open up the vault to revisit guest host Amy Scherer’s previous interview with Liz Weintraub, where Liz discussed her journey from a sheltered workshop to a Senior Advocacy Specialist on the Public Policy team at the Association of University Centers on Disabilities. Then, we go back to the future, as Stephanie tells Jack and Michelle about White Cane Awareness Day.

Check out Liz’s video series Tuesdays with Liz https://www.youtube.com/playlist?list=PLEHWL7i0kECV8GSORs56oK7SP7GXHorOB

Learn more about White Cane Awareness Day https://nfb.org/programs-services/blind-equality-achievement-month/white-cane-awareness-day

Full transcript of this episode is available at https://www.ndrn.org/resource/panda-pod-october-23/ 

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On this episode, the gang sits down with Julie Salih-Worth to talk about her experiences as a teacher with disabilities and how the education system could do more to meet the needs of students and educators with disabilities alike. Then we’re joined by Allyson Matthews, a student who is advocating for herself in the IEP process, and her mother Melisa.

Full transcript available at https://www.ndrn.org/resource/panda-pod-september-23/

Michelle Bishop:

Hey everyone, welcome back to our podcast. I am one of your lovely hosts, Michelle Bishop, Voter Access and Engagement Manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, one of our public policy analysts at NDRN. And I have not had enough coffee this morning, because I managed to spill it all over myself. It’s been one of those days, but things are going to get better.

Michelle Bishop:

Well, everyone prefers that over Stephanie having too much coffee.

Stephanie Flynt:

Except for Stephanie.

Michelle Bishop:

Stephanie with a lot of coffee is a lot. Sorry, Raquel, take it away.

Raquel Rosa:

Hey everyone, this is Raquel, I am the Community Relations Specialist at NDRN, and I am super excited about today’s episode.

Michelle Bishop:

This is a big one, because it’s September, so this is our back to school special, love it. Who are the guests that we have on tap today?

Jack Rosen:

Do I not even get a shout-out anymore? I hosted this… [inaudible 00:00:53] of the interview, I hosted this episode.

Stephanie Flynt:

It was Michelle’s turn.

Michelle Bishop:

The level of beef that is brewing between me and our phenomenal producer, Jack Rosen, rose every single month when I do not introduce him. Our producer, Jack Rosen, please take it away, introduce yourself, and maybe tell the people what we’ve got going for the back to school special episode.

Jack Rosen:

Hi, this is producer Jack Rosen. Thank you for that lovely intro, Michelle. Today our main guest is Julie Salih-Worth, she is a teacher with cerebral palsy. And she spoke to us about her experiences navigating the education system, both as someone who is aspiring to become an educator, and what it’s like for her now as a educator with disabilities, and how we could do more to ensure an inclusive environment for both educators and students alike. And Stephanie, do you want to tell the people about our spotlight story today?

Stephanie Flynt:

Yeah, definitely looking forward to the multiple perspectives that are going to be represented throughout this episode. So today for our spotlight story, we are super excited to have Melisa and Allyson Matthews, they are a mother-daughter duo. Melisa has a background as a teacher of the visually impaired, or as some people refer to them as TBIs. And Allyson is her daughter, who also happens to be blind or low vision, and super excited to hear about the way that her mom helps approach age appropriate self-advocacy with Allyson. Allison is… I want to say she’s around 11 or 12, definitely in the preteen years. So again, super excited to hear about that. And let me tell you, I feel like for me, if I had learned age appropriate self-advocacy prior to high school and started learning younger, I feel like it would’ve been of course more ingrained. And while as an adult, it’s something that of course I have begun to learn, the sooner you start to learn, the more comfortable you get, the more confident you get. And so I’m so excited for you guys to hear about that perspective today.

Michelle Bishop:

If I had learned age appropriate anything in high school, the world would certainly be a better place. So I can’t argue that… Why would I say that publicly? That was a bad idea. Oh, I hope my mom [inaudible 00:03:33].

Stephanie Flynt:

Reverse.

Michelle Bishop:

Mom, go back to not listening to the podcast. Okay, so let’s jump right into it this month, and I will be over here drafting the public apology that I’m going to have to issue to Jack because I refuse to ever acknowledge his contributions to this podcast.

Stephanie Flynt:

Can you sing it or write it in a haiku format?

Michelle Bishop:

First of all, don’t threaten me with a good time. If you want a one woman production of a musical of my apology, I’m ready.

Stephanie Flynt:

Let’s do it next episode.

Michelle Bishop:

All right, let’s get into our first guest this month.

Raquel Rosa:

Okay, let’s get into it everyone, today we are joined by Julie Salih-Worth. Julie, thank you for joining us today.

Julie Salih-Worth:

Thank you for having me, I’m glad to be here.

Raquel Rosa:

So getting started, could you share with us a little bit about yourself?

Julie Salih-Worth:

Yes. So my name is Julie Salih-Worth, and I am an elementary and middle school Spanish teacher. I also teach English as a second language to adult learners. If you count all of the years I’ve been an educator, this is probably year 18, but I’ve been teaching for seven in a classroom. And like I said, I work with elementary and middle school students at a Montessori school here in St. Louis, Missouri. I also have cerebral palsy and a visual impairment, and just a fun fact about me, I am a classically trained musician.

Raquel Rosa:

What instrument do you play?

Julie Salih-Worth:

I play piano. I have not played in quite a while, I’m probably a little rusty at this point. But I play piano and I sing.

Raquel Rosa:

Fantastic, thank you so much.

Jack Rosen:

Funny enough, you and I have talked about this before when you joined us a couple years ago for a get out the vote video. But I was wondering for those who haven’t seen it, or don’t remember since 2020 was so long ago, can you talk to us a bit about some of the barriers that you’ve faced as an educator with a disability?

Julie Salih-Worth:

I could talk for a really long time about that. So I knew since I was 15 years old that I wanted to be a Spanish teacher. I absolutely loved my Spanish class in high school, and decided when I got to college that I would study it, and major in it, and eventually ended up with a degree in Spanish. And so the issue was not that I didn’t know what I was doing, or that I wasn’t good at what I wanted to do, the issue, one of many that I had, is that I was told that because I have a physical disability, a noticeable physical disability, that I would not be able to teach. And I attended a traditional four-year university program, where I studied Spanish and education. I successfully completed the program, made it all the way through. And then when I got to student teaching, which is a requirement in the state of Missouri, first of all, I was placed in a school that was incredibly far away from my house. Which is important to the story, because I don’t drive, I can’t drive, it’s not an option for me.

And so transportation right there is already a barrier to me physically being able to get there. But I worked that out, ended up hiring a driver. And then I was essentially told, after having worked in this particular classroom for six to seven weeks, I was told, “If you have your own classroom within a year, I don’t think…” And this came from the teacher who was supervising me, she said, “I don’t think you’ll be able to manage it.” She said, “You have good relationships with students and good rapport with them, and they listen to you, but you have horrible organizational skills. You don’t know how to plan anything, you look exhausted all the time, and I don’t think you’ll be able to do this.” And quite frankly, those were some very, very crushing words. And I later received a phone call that evening stating that the university had decided to remove me from my student teaching placement, and therefore I would not complete my degree as I had originally planned, I would not complete student teaching, at least not at that point in time.

And I was to come to the university the next morning for a meeting to discuss my options. At which point at said meeting they offered me a minor in education, and told me that that was essentially my option unless I wanted to stay at the university for another year and redo the whole thing again. To which I said, “No, thank you, I don’t understand quite what went wrong here. I mean, there are so many reasons why I can’t stay here another year, but I don’t want to, to be quite honest.”

And so after that happened, first of all, I guess I should say, it took me a long time to really unravel that. And it took me a lot of talking myself out of thinking that I was a horrible teacher, and knowing that I was supposed to be an educator, but I didn’t feel like I was. And I felt like that option had basically been ripped away from me. And I eventually did go back to school, and it worked out. But the message that I want people to take away and to understand, is that that took me 10 years. That took me 10 years to be able to say, “I’m going to do this, and I’m going to try again. And that these voices are not going to tell me what I can and can’t do.”

Jack Rosen:

I think that really speaks to one of the big issues here. I mean, we’ll get to some of the issues with the bureaucracy and the IEP process in a moment. But the truth of the matter is also that there are all these barriers to people with disabilities becoming teachers. So we have students who need accommodations, there is that perspective of people with disabilities on the other side of it can be missing, because it is hard for people with disabilities to become educators. So I’m wondering how we could support people who want to be teachers with disabilities, what can we do to make the education system on the teaching side more inclusive?

Julie Salih-Worth:

So if we think about schools of education and education teacher preparation programs, and how can those programs better cater to educators with disabilities? How can schools better cater to educators with disabilities? We need to realize that we are encountering capable, competent people who come from a culture of experience oppression that has a historical background. Most people never learn about the disability rights movement from what I’ve been able to tell. And if we shift our focus from thinking of disability as this medical condition that needs to be fixed, cured, taken away, removed, “Oh, we’ll just remove the barrier and then the person will be able to function just fine.” Yes, that might be true, but we also need to realize that disability is a strong part of a person’s identity that informs who that person is, and it does inform in positive ways. And I would not be the same teacher if I didn’t have a disability, because I have a different perspective.

I don’t have an able-bodied person’s perspective, I can’t. So when my perspective is different, which it is, then the message that I’m able to deliver to my students is also different. It’s equally as valid, it’s one that they need to hear, it’s one that they need to know, and it’s one that needs to be enfolded into the fabric of our educational system. What I’m trying to say is that the voices of folks with disabilities need to be part of the fold of the pedagogy that makes up how we think about education. I’ve always said when I was in school, and I was in school for a long time, I have two degrees, three certificates, and during my 20 something years there I did not have one teacher with a physical visible disability. So we tell educators in their teacher preparation programs that as they’re working with students, and as they’re planning curriculum, and as they’re envisioning their future classrooms, that they need to think about who their students are.

They need to think about students of color, they need to think about students from different socioeconomic backgrounds, they need to think about A, B, and C. And they need to make sure that those students, those voices, those faces, those experiences are represented in their classrooms, in their literature, in their lessons, in their work that they plan, or take home, or what have you. But I said, “I don’t remember anyone thinking that way for me, I was educated by all able-bodied people.” And so I think what needs to happen is we need to reframe how we look at expectations from the educator side, we need to reframe how we look at the expectations for the teacher prep programs, we need to reframe how we look at disability. Is it just a one class and we’re done, or is it something that we’re going to weave into everything that we think about because we need to make sure that that representation is there?

Jack Rosen:

I think that’s a great way to put it, Julie, that it is not enough to just say, “We support students with disabilities, or we support educators with disabilities.” But it needs to be putting in the actual work to do that.

Raquel Rosa:

So Julie, you have a wealth of experience, and I think it is just beyond all of us to relate to the different perspectives and hats you wear, and the history that you have experienced. So I wanted to touch back on something you were discussing earlier, which is the IEP, and I think there’s a lot to unpack with the IEP process. Specifically for this question, I would like to know… A lot of families, parents, legal guardians, they unfortunately come into these IEP meetings unfortunately with an us versus them kind of tone. And it really isn’t supposed to be that way, we really want to make sure that these are student-centered collaborative discussions where the student is at the center of it, and their success is contingent on everybody’s creativity and buy-in. So I was wondering if you could talk to us about how each member of the IEP team can work together to achieve the ultimate mutual goal of academic, social, and all the other attributes of success that a student has in the classroom.

Julie Salih-Worth:

So first of all, I think that communication is key when you’re working on an IEP team, I think that recognizing your role on that team is also super important. And so one of the things that I want to point out is that parents and legal guardians have a huge seat at the table, and so does the student. And so many times I’ve heard people say… Including teachers that I’ve spoken with, they’ll say, “Well, it could be traumatizing to have the student there, because they won’t understand what we’re talking about, they won’t know how to respond. They are too young, blah, blah, blah, blah.” And I’m like, “Okay, so you’re going to have a meeting about someone, you’re going to talk about a 20-page document that has all kinds of things about that person written in it, and they’re not allowed to be in the meeting, is that okay? Would you like it if someone did that to you?”

And so I think that first of all, the student can have a role, even if they’re five years old, they can go to the meeting, they can introduce themselves, they can present something about themselves that they want that team to know. It could be something that they like, a hobby that they have, it can be something that they recognize is difficult for them that they acknowledge they want to work on. And this can be something that the whole team pulls together on and makes sure that that student, however old they are, is at the table for their meeting, even if it’s just for five minutes. Do they have to be there for the nitty-gritty of all the stuff that might go on for two hours? Probably not, but we need to be able to give them the agency to speak up for themselves at a meeting that determines their educational future in large part, that’s all about them.

And time is of the essence for teachers, there’s never enough of it to get the 99.9 million things that need to be done in a day actually done. And I understand that, because I don’t teach one level I teach 14 different classes in first through eighth grade, I get it. And if I’m asked to be on an IEP team, I will be on the IEP team, and I will make sure that that kid gets their accommodations. That means communicating with the special ed teacher, it means asking questions, never think that any question is stupid. We have a tendency… And education schools breed this, we have a tendency to want to be perfect at everything. We think that everything needs to be just so, we think that the lessons need to be just right, the kids need to be engaged 100% of the time. This needs to happen this way, the paper needs to be cut perfectly, yes and no.

If you don’t know something, ask a question. Don’t be afraid to say, “I don’t know how to work with this student, and I need guidance, and I need support, and I have ideas but I need to know if they are feasible.” Don’t be afraid to say you don’t know. I think that if a team of know-it-alls comes together, and everybody comes to the table as an expert, like, “I know this, and you know this, but you don’t know that.” We are all at this table to serve the interest of the child, we are at this table to collaborate.

We are not at this table to get into a battle about services and supports, and ideas about how to make those happen. Because truth be told, the services and supports and all of that, to be quite frank, are going to go away at some point in the child’s life. And the child may not remember that, but what they might remember is the sense that they got when they felt like they were not included in those meetings, or the traumatized feeling that they felt when they realized that this whole meeting was going on about things that they didn’t even know about because they weren’t invited. And so when everyone comes to the table and there’s that us versus them, the first thing we need to do is establish, who are we there for? We’re there for this child.

Raquel Rosa:

So I was hoping to wrap us up, if you could give us one takeaway what students, families, and educators can do to more strongly advocate on a systemic level, what advice do you have?

Julie Salih-Worth:

I think the most important thing that you can do is choose your issue wisely, know that you’re not going to solve the whole thing overnight, because education is a broken system. So choose your issue wisely and determine, who is with you in that thing? Who feels the same way you do? Who can you talk to about this? Who is having the same problem? Who sees it the same way you do? Or who can offer you a perspective that might compliment yours? And talk to people, form a group, get with each other to figure out how to, for lack of better words, solve the system, because you’re not going to do it alone. And to go back to the question about the IEP and the us versus them mentality, we often come to those meetings feeling like we are fighting a battle all by ourselves, and we’re not.

There’s always someone somewhere who probably has the same issue, or feels the same way, and might be afraid to say that. And so this is the piece of advice that I would give. If you can find that person or group of people and get with them, talk to them, get to know them, and strategize around your issue. Learn about it, learn about its history, learn about who did what and how far has it grown, how far has it come from where it is now, and strategize and make a plan for how to solve it. But recognize that you’re not going to do that by yourself, and it might be a really long process, and that we have to do it in collaboration with others. Small victories count, choose your battles wisely. And don’t be afraid to say, “I don’t know, I don’t get it, and this is really frustrating.”

No one is a warrior all by themselves. In the disability community we are taught that you have to pull yourself up by your bootstraps and you have to figure it out, you have to be independent, you have to do it all by yourself. Okay, no, you don’t. I did not get myself to work this morning, I got in a car with someone who drove that car to work. So independence is really an interdependent thing, we all work together whether we’re solving the problem of how to get to work, or whether we’re solving the problem of bias in test scores. And so if you as an individual can figure out what is that one thing in this broken system that you care strongly enough about to fix, get with your people, get with your community and figure out who they are. And then target, who is the person who can help you get what it is that you want to get done? And realize that might take a while. And keep going and say, “Well, that didn’t work, but what else can we do? Well that didn’t work, what else can we do?”

In the same way that when a child doesn’t understand something the first time, if you are a good educator, you don’t just walk away from that child and say, “Well, oh well, you didn’t get it, so therefore I’m done teaching you.” You work with what you have, and sometimes that means that you build a plan to start over, or you build a plan with more people or more resources. But you never, or try to never think that you are in this broken system all by yourself, groping at straws, trying to figure out which way is up. Because I guarantee that there is someone there who knows something that you may not know, who can piece together along with your knowledge the information that’s missing. So always find your people, focus on whatever your goal is, define it, and then figure out who can get you where it is that you want to go on that educational trajectory. Who can get you there? What is it going to take?

Jack Rosen:

I think that’s so true, Julie, that at the end of the day, we need parents, educators, administrators, and of course these students to come together for what’s in the best interest of students with disabilities. Ideally, it shouldn’t be two sides fighting it out, it should be all of them working together towards the ultimate goal of making sure students with disabilities receive the education they are entitled to.

Julie Salih-Worth:

Exactly.

Jack Rosen:

Thank you so much for coming on today, it was great getting to reconnect with you. And I think you shared a great perspective on what it’s like both as someone who’s been a student with a disability, and now someone who’s an educator with a disability and is fighting for their students. So it was great to have you on and thank you so much for joining us.

Julie Salih-Worth:

Thank you again for having me.

Jack Rosen:

All right, so today on the podcast we have on Melisa and Ally Matthews. Ally is a student who has been advocating for herself in the IEP process, and Melisa is her mother. And we’re going to talk to them about self-advocacy and how students can stand up for themselves and get the accommodations they are entitled to. Thank you for joining us today.

Melisa Matthews:

Thank you for having us.

Jack Rosen:

All right, so our first question, Melisa, could you tell us a bit more about you and Ally’s journey, particularly as it pertains to self-advocacy?

Melisa Matthews:

Absolutely. Ally has oculocutaneous albinism, and we have been advocating… Even when she was in early intervention, we did not have a teacher for visually impaired who supported us. And I was constantly asking that question, whether it was the ability, could she physically do that or not do that, or could she see it or not see what they were asking her to do? So even at a very young age, just asking a lot of questions, and even beginning to model some of that for her. So she’s 11 now, and we continue to navigate advocating not just in schools, but outside of school settings.

Raquel Rosa:

Can you tell us a story when you had to advocate for yourself and how you went about doing that?

Allyson Matthews:

Sure. So one of the first times I had to advocate was in preschool when one of the teachers was sharing a book and reading it out loud, and I couldn’t see the pages or the pictures, so I had to ask to move up and see them. And the teacher said yes, so I was able to now see the book, see the words, and see the pictures.

Raquel Rosa:

Thank you so much. So my next question is for the both of you, I was wondering if you could talk to us about what educators can do to be more open and encouraging about self-advocacy from both a parent perspective and a student perspective.

Melisa Matthews:

Yeah, so absolutely. I think as a parent, it’s very important for you to be able to share successes and struggles that your child is having outside of the classroom. And really looking at your child as a whole, being honest at that IEP table. And also as a parent, but also as an educator, trying to really understand the impact of education and access to education, and especially with all the technology being open. And again, what are they doing outside of the classroom? And as educators sitting in the IEP table, really listening to parents and understanding what that child is like outside of the school. Because outside the classroom is a lot of times just as important as inside the classrooms, understanding how they’re accessing their education, or their social life, or curricular activities, as well as just how are they growing and developing as kids? So I would encourage not only parents, but educators all sitting at the IEP table really looking at from the time the child is awake to the time the child goes to sleep, what occurs during the day? And take all of that.

Jack Rosen:

So I’ve been through the IEP process myself when I was a kid, and I know it can be hard to advocate for yourself. Do you have any advice to other kids and students about how to advocate for themselves and the accommodations they need?

Allyson Matthews:

Yeah, I actually do. When you’re talking [inaudible 00:30:36] say what you need to say. Because sometimes you can get super nervous if the teacher is projecting up on a TV screen and you can’t see it, sometimes people can get super nervous when they’re asking. And just the thing is, you have to really come across straight and just say what you mean.

And also having a plan if that teacher or parent says no, because sometimes I ask for things and people say no. So I have to make sure I have a plan for my mom to figure out, or me to figure out. And when this does happen, when a teacher says no, I usually go home and tell my mom, she emails the school, and we get it solved. Or I might just come to the teacher and say, “Hey, I need this and this.” And they might just fix it then and there. And also when you’re talking to a teacher, make sure you get your point across, because sometimes that can be nerve-racking and that happens to me too. But when that does happen, you just have to get your point across, get it fixed, and then you’re good to go.

Jack Rosen:

I think that’s such good advice, never take no for an answer when advocating for your right. Melisa and Ally, thank you so much for coming on today and sharing your perspective. I think it’s really valuable for teachers, students, and parents alike to hear about just how important self-advocacy is. Thank you for joining us today, it was great having you on.

Allyson Matthews:

You’re welcome.

Michelle Bishop:

Well, thank you to all of our guests, and it is September. So Stephanie, I’m guessing you have a themed back to school joke for us.

Stephanie Flynt:

A themed back to school joke for everyone, it’s actually kind of a triple-decker joke.

Michelle Bishop:

Why are all your jokes so long? But go on.

Stephanie Flynt:

Okay, I couldn’t help it for this one. I literally laughed for half an hour because it’s so funny.

Michelle Bishop:

Oh, no, I’m so worried.

Stephanie Flynt:

So what is a cave student’s favorite class?

Michelle Bishop:

A what student?

Stephanie Flynt:

A cave student.

Michelle Bishop:

A cave?

Stephanie Flynt:

A cave.

Jack Rosen:

A cave student?

Stephanie Flynt:

A cave, C-A-V-E, someone who lives in a cave.

Michelle Bishop:

Jack, do you know a lot about cave people?

Jack Rosen:

I haven’t met any.

Michelle Bishop:

I haven’t either, but we can come up with an answer to this. Okay, a cave person’s favorite class?

Jack Rosen:

Michelle, do you want to just explain what happened?

Michelle Bishop:

Nala the service dog jumped on me. I think Nala doesn’t like it when I insult your jokes.

Stephanie Flynt:

Yeah, she doesn’t, she’s very joke protective.

Michelle Bishop:

All right, we don’t have an answer, we got nothing.

Stephanie Flynt:

Gem class, get it?

Michelle Bishop:

Gem, G-E-M?

Stephanie Flynt:

Yeah, G-E-M.

Jack Rosen:

Because they’re in a cave, so maybe there’s gems there.

Michelle Bishop:

So there’s gemstones because they form in rock.

Stephanie Flynt:

Right. Oh, so speaking of which, did y’all know the kids now apparently have walkout songs? Instead of first day of school photos, they now do walkout songs or whatever.

Michelle Bishop:

I respect it.

Stephanie Flynt:

Yeah, so what do you think this cave student’s favorite [inaudible 00:33:45]?

Michelle Bishop:

Oh, no, this is going into another joke.

Stephanie Flynt:

Of course.

Michelle Bishop:

I wasn’t ready for this.

Jack Rosen:

Okay cave student… Wait, I think I got it.

Stephanie Flynt:

Remember the band.

Michelle Bishop:

The Rolling Stones?

Stephanie Flynt:

Yes, [inaudible 00:34:00].

Michelle Bishop:

Oh, I hate it when I know the answer to these. Oh, what’s happening?

Stephanie Flynt:

I think you need to go and watch some Schoolhouse Rock.

Michelle Bishop:

Wow, she’s doing a victory dance y’all.

Stephanie Flynt:

Of course I am.

Michelle Bishop:

As always, you can reach us at [email protected]. Jack, how can they follow us on social media?

Jack Rosen:

You can follow us on Twitter, Facebook, and Instagram at NDRN Advocates, we’re also just National Disability Rights Network on LinkedIn. All right, until next time folks.

Stephanie Flynt:

Isn’t it X now?

Jack Rosen:

We’re not doing that. Until next time.