In today's episode, we'll be shining a light on ableism, a form of discrimination faced by people with disabilities, whether physical, mental, or cognitive.

Our special guest is Caroline Vernon, a business coach and diversity, equity, and inclusion champion. Caroline opens up about her connection to ableism, sparked by her sister with Down syndrome. 

Caroline highlights the importance of creating inclusive environments where individuals with disabilities are empowered to thrive. 

Listen to this episode of Pity Party Over to learn how, by advocating for accessibility and fostering empathy, we can build a more equitable and compassionate world.

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TRANSCRIPT

Stephen Matini: So professionally, how did you get interested in what you do today? Have you always been in this line of work, or is this something that has evolved?

Caroline Vernon: You know, I've been in the world of work in regards to employee engagement and coaching, and so it was just kind of what I'm doing now as practice leader of a coaching organization. It just made sense. It, it was a natural progression, natural transition to focusing on something else. 

You know, within the world of work, I've always had an interest in coaching and I've always believed in the power of coaching. So it was a natural transition to go from employee engagement and selection and talent acquisition and career development into career transition and more into leadership development as well.

Stephen Matini: And I wanna ask you, as someone who does also coaching in the whole field, let's call it learning and development. I've done training, I've done different aspects, but then I've noticed that the only thing that still gives me a tremendous amount of satisfaction is coaching. What are you find in coaching that maybe you haven't found in other aspect of our field?

Caroline Vernon: Just that authentic relationship, those authentic conversations. They can be raw and I really like to help people and empower people to find their authentic voice because, you know, a lot of people never go there . They don't explore that side of themselves. They don't take control of their own destiny as far as their careers are concerned. 

So being in career coaching specifically really has been a really powerful experience in my career. To see people that have never even spent time developing themselves or even thinking about their path or their career journeys to where they end up after coaching and how they see their careers differently and how they plan to empower or advocate for themselves in the workplace. I just, it's a really powerful experience to me.

Stephen Matini: The one thing that I love the most about coaching, it is probably the same reason you pointed out it, just the genuine conversation. And I love the fact that in that relationship we can be ourselves. That can be very transparent and open, and I really love the fact that I can provide that space for people which often they cannot find in other parts of the job. You become a brilliant advocate of people and their singularities and anything that they stand for. And how did you get interested in, in ableism, which is basically, you know, the first topic that you and I talked and when we met,

Caroline Vernon: I have a sister with Down syndrome and I have always been her interpreter throughout her life. So when I heard about the concept of ableism, and it just was something I was naturally drawn to, and I really sunk time into learning what ableism actually is, how it shows up in our daily lives, how it shows up in the workplace. So that's my experience with learning about ableism. 

I read an article one time, that's really where it started, is this article, I know there was no malice of forethought and it was supposed to be a beautiful, joyful experience. In the article, the gentleman that wrote the article expressed this joyful experience or shared this joyful experience about his brother, but he shared the words, my brother is a low functioning downsy. A lot of people call people with down syndrome, Downsy. They say this down syndrome person or not person with down syndrome.

That's where the first vision of ableism came to life for me. It's like the slow functioning downsy. There was a picture of him holding a baby and the quote was something like, nobody has ever let this boy hold our family's babies. This gentleman goes on to say, I did and it was a joyful experience and he's a low functioning downsy, and it really stuck with me for a long period of time. 

And so I wrote a long article and posted it on LinkedIn about ableism and how just those words, how they impact people with Downs syndrome, how those, how labeling them as a low functioning downsy continues to perpetuate the stigma and continues to marginalize this group of individuals. And that's really where I vowed to never use language like that about my sister and to educate people around me to never use language like that. And the reasons why, you know, how hurtful that is to that community,

Stephen Matini: You know, in the fight, you know, for diversity and becoming aware that we all come in different ships and size, oftentimes language become this displaced that some people perceive to be some sort of a battlefield. You know? And now I cannot say this term, I cannot say that term. I get censored if I, if I use it. So, and I, and, and I agree that it's really important to be sensitive to the words that we use. In your experience, ableism can be combated purely based on being aware of language or what else has worked in your experience?

Caroline Vernon: Being aware of how the language actually impacts the people that it's referring to or that's it's speaking about, but also how it impacts people around you. I've heard the word, this is a terrible word and I, I only use it in this, the R word. 

So I'll, I'll use it once and then I'll refer to it as the R word. Yes, retard. I've heard that used still today in the workplace as far as we've come, we haven't come as far as we need to. And I don't care actually who uses it. I will always speak up and say, that word offends me. That is a hurtful word that we used in, in our modern language for many years to actually describe somebody, you know, with down syndrome or rather neurodiverse with other neurodiverse conditions. And it's a hurtful word. And it, like I said before, it further marginalizes this certain group of community or or certain group of people, you need to get away from further marginalizing this group.

Stephen Matini: You know, I wanna ask you ableism and this is something that I'm asking you out of sheer ignorance. Is ableism connected also to ageism or other type of issues or, or specifically is connected to neurodiversity?

Caroline Vernon: It's specifically connected to neurodiversity, typically. Ageism is its own beast, just like racism is its own. And ableism refers to those that have diverse abilities. So not necessarily ageism or racism.

Stephen Matini: You know why I'm asking you this? Because recently I got trained by this phenomenal woman who focuses on ageism. We are supposed to deliver a training in fall about this one. There's a client, there's a company that essentially has a difficult time attracting younger people and keeping them, you know, she's gonna be one who provides some basics about ageism, how that works. And so she explained to me all the, you know, psychological, sociological ramification on that. And then eventually we have to come up basically with a plan, you know, with the participants to start slowly changing the culture so that can be more inclusive. And a lot of the things that she covered somehow reminded me of the same challenges that I've seen you know, for racial discrimination or even things that, that you share with me.

Caroline Vernon: I don't think it matters if it's racism, ageism, or ableism. It's any of those situations are like a dark cloud. You know, they cast a shadow that can never be escaped from unless we educate one another and we advocate for those that this language or this discrimination is targeting its impact, whether it's ableism or ageism or racism or sexism. Its impact is relentless and it's deeply emotional. So it's one of those situations that even though it has its own word, the impact is the same.

Stephen Matini: To make things even worse, and more complicated is the fact that this conversation has taken epic proportion. You know, particularly in some countries like the US has become very polarized around the notion of what is freedom of speech? The fact that a certain words, it should not be used that way or should not be used at all. As some people feel that just censorship. What are your thoughts about, you know, what about really freedom of speech, this ridiculous conversation that is happening?

Caroline Vernon: There is a fine line between freedom of speech and using ableist or racist or, you know, sexist language. It's about respect. It's about fighting for dignity, and it's about not further stigmatizing that community. It has turned in very political. I'm not not sure why it's been associated with woke culture. It's not a political issue. It's about respecting one another. Each of us have a diverse ability. It's about empowering each other and lifting each other rather than using language that tears each other down. The awareness of it is the most important aspect of it. It has nothing to do with, you know, whether you're on the left or the right. It has everything to do with being a decent, respectful human being.

Stephen Matini: You know, this polarity happens all the time. You read it on the news in the us it's almost like witnessing the existence of to different countries. So in your job, in your work as a person who leverages neurodiversity, combating ableism, when you were faced with the hostility of, let's say, with some people that somehow could not quite grasp it, what has been like a successful strategy in order to reconcile these two opposite positions?

Caroline Vernon: More inclusive education is the best way to kind of reconcile that. Educating those that are just not aware of even what ableism is. You know, it's not a word that's thrown around a lot, even when I go looking for it, you know, I don't see that word used a lot yet. Any opportunities I have to educate people that don't understand the impact of ableist language. You know, I think that's been the most successful way. 

But also being respectful about  that are unaware, I think is very important. It's not the immediate fire back. Don't say that. That's ridiculous. You shouldn't use that language. It's also being respectful in my approach to educating people that are unaware of what ableist language even is.

Stephen Matini: If someone is the target of the language, whichever type of neurodiversity the person can experience based on your experience, what would you say to those people? Maybe they could be listeners of this episode in the future. What would it be the best way they could do? How should they react to the attack?

Caroline Vernon: I'm thinking of my sister, for example. We've always taught her just to ignore, so ignore ableist language, ignore comments that don't necessarily align with her abilities and don't empower her to believe in herself. What I would suggest is exactly what I do, and that is respectful education. That is important for them to feel empowered, to be able to defend unquote themselves against language that is disrespectful. 

Yeah, I think that's probably the best way to do that, is to continue to educate and to continue to advocate for themselves and for those that have diverse abilities like them, but in a respectful way. I don't think lashing out ever helps a situation. It's not who these individuals are. However, you know, respectful education, I think is the best way to combat further ableism in their relationships with people.

Stephen Matini: Have you ever organized maybe for a client or for a company, you were working for a program actually to create greater awareness around ableism? And I'm asking you this question just in case someone will listen to this episode and maybe they could be interested in, in structuring, you know, th this education you're talking about in their workplace. I don't know if you've ever done that before.

Caroline Vernon: I have. It's been years and years ago I worked for an organization that we used an assessment that focuses on the individual's strengths. And we provided that assessment to individuals that were a part of a leadership program within the Special Olympics. We started with this assessment and they learned what their strengths were. And from there it was such a natural progression from this specific group of people who have always been told that once you overcome this obstacle, you will get better at this. 

And once you overcome this weakness, you will be able to do this. We never spoke those words. We said, here's what you're great at. Here's what you should really lean into as far as your strengths are concerned. And with that information we advocated and empowered these individuals to learn how to be leaders in their communities. And there was a graduation ceremony where they got to show off a, a talent or a skills.

It was beautiful, it was at least a 12 week cohort type of program. And at graduation, I've never seen so many smiles. And even throughout the whole program, like I said, we were focused on what they do well and what they do right, instead of the things that they can't exactly master or haven't been able to do. It was such a beautiful program, it made such a lasting impact on me. I think about it, I think about those individuals that were in the program program. My sister actually graduated from that program as well. Yeah, it's definitely one of the highlights of my career.

Stephen Matini: Has your sister ever told you what it means to experience ableism? I don't know if she ever experienced it.

Caroline Vernon: No. She's never told me what it feels like to experience ableism. She has been pretty sheltered. We've kept her pretty sheltered as a way to protect her. You know, my mom has kept her very sheltered , she's almost 50. And for the first time in her life, she will live independently starting this summer. She will live in a community for people with neurodiversity. It's a beautiful, very protected communities. 

So she's never specifically addressed that ableism. I actually shared what ableism meant with her. You know, I've never, never sat down and asked her, cuz I know I've seen it throughout the years. I've seen that she's experienced it. We just didn't have a name for it. We didn't have a label for it. We just called it people that were rude to her or people that disrespected her to make a very long answer. No, she's really never told me what it felt like to be disrespected in that way.

Stephen Matini: As you're talking, there are so many thoughts, so many feelings that come to mind, you know, because a, as you pointed out, ableism is something very, very specific. Discrimination. It really shows up in so many different ways. And so it could be, as we said based on your ethnicity. It could be around a sexual orientation, the fact that gender, whatever that is, you know, and every single aspect is very different. They had different fights to fight. And somehow, in some ways there are certain, I think commonalities.

Caroline Vernon: It's not your burden to bear, you know, how other people think and how their beliefs aren't your burden to bear. That's the exact same way I feel about people who are thoughtless when it comes to the language that they use or their actions against a specific group of individuals. It's not for me to wage some kind of war. 

I'm a peaceful human being. , my approach has always been to never just shove it down anybody's throat. I don't think it helps. I think it further marginalizes people, groups of people, you know, diverse groups of people. I think that approach doesn't help. And you're absolutely right. It's what's in your backpack that you have to carry.

Stephen Matini: I think that you know, being okay with whichever life has given you, I think is such an important thing. And it's interesting because the other day, as I was talking to the woman that I mentioned before who focuses on ageism, she says something really interesting. She said when I started training, one of the first exercises I asked people is, how old do you think I am ? And she's in her fifties and she's like, you have no idea people's reaction. It's like, you know, you exploded a bomb and what people do you order to dodge the connection . And at the end she said, you know, the, the first step towards fighting that is actually you being okay with the fact that you are aging. You know, and it's okay and all that comes with it, you know, but it becomes painful, hurtful instead of when you yourself, you're not okay with the whole notion of time going by. So she really made me think a lot because all these forms that we're talking about are so pervasive and they're so imbued in our cultures. You know, the language that we use and the stuff that we say, you are the culprit. You're not aware of that. And I agree with you. The first step is to be aware. So your sister is going to move out. Are you sad about it?

Caroline Vernon: In the back of my mind, I'm slightly worried in my heart, which I think is where it matters most, is I'm happy for her. She needs to have her own life. She has has been a very beautiful and loyal, steadfast companion to my mother, who is 92 her entire life. She has been her caregiver, she's been her confidant, she's been her just all around pal. But she needs her own life. And so, you know, she's approaching her 50th birthday coming up and it's very symbolic to me that it, she is approaching this milestone birthday and moving out independently for the first time in her life. I think it's going to be something that she really enjoys. They are very attuned to the needs of this particular group of individuals. You know, I, I have to keep telling myself, it's gonna be fine, it's gonna be fine.

Will I miss her? Yes, she lives with me. Both my mom and my sister live with me and they've lived with me for the past six months. And it'll be strange for a little bit. There will be a little bit of emptiness in this house, but I have to keep reminding myself, you know, it's time for her to fly. I know that she will be really happy once she gets used to it. So we're gonna start slow. It's gonna be a couple of days a week versus, you know, just from here to there. So that slow process will be exciting to set up her new place and decorate and everything. So that part is really exciting and I'm excited for her mostly, but I'm a little sad for myself.

Stephen Matini: Yeah. Also a conversation that I've had countless of times in the past with people, and I hadn't mostly believe it or not, around, well sometimes when we talked about LGBTQ rights, you know, and sometimes women's rights and whatever they might be. People naturally they try to understand something by using their own experiences. And that's normal to do that. This is my life, these are my experiences, and I compare it to what I'm hearing just to get a sense of how I should orient myself. And that's fine. But what I say to people is, you know, that's okay. But then you have to stop because you will never live that life. You will never know how it feels to be someone who experiences neurodiversity or to be a woman. So realistically, all that you can do is just learn. You have to shut up . You have to listen and try as best as you can to understand that. Because no matter how much you try, you will never know how it feels to be someone of a different hue. You know, I say shut up, but like, you know, just be humble and listen and grow and to appreciate that experience that will never be yours. I think it's the best way. Definitely for me.

Caroline Vernon: That is the best approach in my, my opinion as well. It's just, you know, you know, that's the old adage of walking a mile in someone else's shoes. You know, you don't know what those shoes feel like. I'll never know what Chrissy has experienced. I'll never know what people that are on the autism spectrum experience in the world, in the workplace. I do know that people, at least in the United States, neurodiverse individuals in the workplace have experienced layoffs more than neurotypical individuals. Especially as of late, you know, it's estimated that 30 to 40% of neurodiverse individuals are now unemployed, which is a significant increase over those that are neurotypical. I don't walk in their shoes. I don't know how it feels to be in a workplace that sometimes doesn't understand the differences that they have inside the workplace. I don't understand how it, they feel being impacted by so many layout. That's a big percentage of individuals that are experiencing, you know, joblessness right now. It's important to be respectful and to just be humble and learn.

Stephen Matini: Knowing anything, everything you know today, you know about neurodiversity. Do you think that the term neurodiversity in neurotypical are, are they still the right terms?

Caroline Vernon: As far as I'm concerned, I believe they're the right terms. I'm not the governing body on what terms are correct. I believe they are , that's a good question. If I'm incorrect, I hope what somebody would respectfully correct me on that language, but as far as I'm concerned, I believe neurodiverse and neurotypical are still the correct terms to use. In all my readings and things, those are the, the words that are used.

Yeah. It's like the word disability. I prefer the word diverse ability. I prefer those words over disability. However, some of the diverse ability community say that disability is the word that they use, I wanna use whatever y they use, I want to address them in the way that they want to be addressed. You know, it just varies so much that I, I feel exactly the same way. Neurodiverse to me sounds better, but it is it to comfort myself. You know, it's saying that's not right, that's not, it's not about me, it's, it's about how they want to be referred to, you know? Because neurodiverse includes things like a DHD and dyslexic. So maybe if you are autistic, you want to be known as autistic, not neurodiverse, because that includes more different conditions in, in that word.

Stephen Matini: Another simple rule that I gave myself is that whatever makes the person happy, I'm going to use it. Once again, I know if it's at the right parallel, probably not, but like the whole conversation now about gender fluidity, you know, some people want to be called they and have plenty of people that say, oh my God, this is ridiculous, this. And then I said, listen, it's not that hard. If someone enjoys that, how difficult can it be for you to adopt that word? I mean, I don't see the point, you know, if someone gives someone else happiness, why does it matter that that's only matters really just to be happy and just use it. I mean, it just, you don't have to become a different person. Just simply be aware of what makes someone else happy and just go with the flow. I mean whatever, you know?

Caroline Vernon: Agreed. And that I think a lot of the time is fear of that, of just not understanding that point of view. And you're right, it is absolutely not hard. It is not difficult to be kind and to use language that people want to have used about them, or words that they want to be used to describe them or called, you know, if somebody wants to be called they, it's not hard to say they , you know, it's really not difficult and you're exactly right. If it makes them happy and it makes them feel seen and heard, then it's not up to me to decide what other people wanna be called.

Stephen Matini: Caroline, we touched different points. One question that I'd like to ask, you know, at the end of our chat, is there anything specific that would be important for our listeners to take away from this conversation? Because we touched different things, but based on anything we said, I don't know, is anything that you would like to emphasize?

Caroline Vernon: I believe in the power of educating, educating yourself, educating others around you. I really believe in respectfully educating those that don't understand how powerful words are. I believe that that is important. Employment opportunities, I believe are so important or just any other opportunities for those that are in the neurodiverse community. There is a glaring lack of opportunity in the workplace right now. And if this can change the mind of one person that's recruiting or hiring right now for a job and they are considering, or they're really teetering on whether to hire somebody with the neurodiversity, I encourage that person, that one person, if even if it's just one, to give tho that person a chance to educate themselves in their abilities rather than their disabilities and people would be pleasantly surprised.

Stephen Matini: Thank you so much for spending time with me. I send all my love to you and to Krissy for the moving out to be as painless as possible.

Caroline Vernon: . Thank you. I really appreciate that. It's coming up a lot sooner than I know my mother is ready for as well. But it's time.

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