This interview was conducted as part of the podcast, LGBTQ&A.
More than a third of LGBTQ+ adults identify as having a disability, and yet, as Maria Town, President and CEO of the American Association of People with Disabilities, notes, not everyone who has a disability identifies as disabled. It's a distinction with which the queer community is particularly attuned to — self-identification. You have to come out and declare yourself as queer in order to be counted as such.
"Everyone will become disabled if they're lucky enough. Aging is a privilege. Far too few of us get the opportunity to live to be a ripe old age. And if you do get the opportunity, you will likely become disabled," Town says on the LGBTQ&A podcast this week. "For me, disability is not necessarily a sign of weakness or a sign of a lack of competence. It is instead a sign of survival and resilience and strength."
Read highlights below and click here to listen to the full interview.
Jeffrey Masters: I was thinking before we spoke about how few people with disabilities we see on-screen and in the media. And yet, it's hard to say for certain since not everyone has a disability that is visible.
Maria Town: There are some big similarities between the disability experience and the LGBTQ experience in that you often have to come out and you have to own your identity. And we talk a lot about disability pride in the same way we talk about LGBTQ pride. Even for me, I'm somebody with a very visible disability. For a very long time, I felt like I had cerebral palsy like I had a shirt. It's something that I just happened to have. It wasn't necessarily a part of who I was.
It wasn't until I was in college that someone asked me, "Do you identify as disabled?" And I remember thinking very quickly that no one had ever asked me that. I remember when I said, "Yes," how freeing that felt. And so that's the other reason that we may not see all of the representation that's happening because there may be many people in the media who have disabilities, but don't identify that way themselves.
JM: What changed in your life after you started identifying as disabled?
MT: A huge part of what changed for me is I began to seek out disability community. When you're somebody who specifically grows up with a disability, the primary message that you receive is pass. I went through decades of physical therapy and occupational therapy learning how to walk. Learning how to force my body to do something that it did not want to do so that I could be more normal. You're not encouraged to hang out with other disabled people. It's like, "I've worked so hard to pass. If I start hanging out with other disabled people, what's going to happen?”
When I said yes to that question, it opened a door to this community where I finally felt understood. One of the reasons I do the work that I do is because I want everybody to have that chance. We see so often that community within marginalized spaces can really save lives and I think that's true for disability.
Similar to an LGBT experience, often youth with disabilities are the only ones in their families. They're likely pretty isolated. And so you've got parents who are just like, "How can we cure you?" You're probably not around a lot of other youth. I think social media is changing that.
JM: That's been a change in our lifetime. How did you personally find community before social media?
MT: I didn't. I grew up in a pretty rural area of Louisiana. I was in special ed. I rode the short bus. So my access to community came in my adaptive PE class and nowhere else.
Once social media grew and there started to be groups around disability identity, that opened up a whole other world. People with disabilities experience a lot of medical ableism. Just so everybody's on the same page, ableism is the discrimination that basically says that people with particular abilities are better than those without.
And so just having a space for people to say, "Hey, this weird thing is happening with my hip. Has this happened to you all before? What did you do?" Or "I'm exploring this particular medicine. Has this worked for you?" It creates spaces to have those kinds of conversations.
I was what they call mainstreamed. So with a few exceptions, I participated in a standard classroom setting. I received accommodations in that classroom and for only a few things was I in what we call a segregated setting. And I think about this on a daily basis. I am so incredibly lucky. I am someone for whom the system worked. And all too often, the system fails.
Even with the mainstreaming, someone who I knew in school might say to me, "Oh, but Maria, I don't see you as disabled." And when I was in school, when I was younger, I would take that as a compliment. Right? And today, if somebody said that to me, I would be like, "What?" Disability is a huge part of who I am. I want you to see me as disabled. And I think, especially for young people growing up disabilities, even if their peers get a chance to know them, they are also learning disability stereotypes and ableism at the same time.
JM: Even for you, how often do you catch yourself having ablest thoughts?
MT: Oh. I mean, in the disability community, we have a concept called internalized ableism and I deal with it all the time. I'll give you a specific example. I've already mentioned how much time I spent learning how to walk and relearning how to walk. I know at 33 already, my body has actually been damaged because I've spent so much time doing this. It would be ultimately better for me to begin using a wheelchair more often than I do. But that decision is one that I struggle with. And I know that the reason I struggle is because of internalized ableism.
When I do decide to start using a wheelchair, more often than not, it will be a difficult conversation with my family, potentially a difficult conversation with my friends. There have been so many people who've made tough decisions like that who then have their family say, "Why would you do that when you can walk?" And the answer is because when I walk, I literally have to spend time worrying about the next time I'll get to sit down.
JM: It would be a difficult conversation with family and friends because they would prefer you not to be in a wheelchair?
MT: Right. And also because it's not just me who's gone through all of this. A lot of people are involved. Whether it's folks that have helped you go to appointments or figure out how to manage yourself in an environment.
JM: All of that requires the presence of another human being and now we're living in a time of social distancing. That's not a privilege that everyone is able to partake it.
MT: Yeah. One of the core values of the disability community is interdependence. It's this recognition that we are all connected and all rely on each other. One of the reasons it's a core value is because the value of independence is actually toxic. And if we're being real, it's totally false.
Think about your day and how many things you did today that you accomplished totally on your own. Even what we're doing right now: someone made these headphones, someone made this recording device. And I think coronavirus is pointing this out, we're all connected.
JM: Because you have a disability, do people feel more comfortable touching you—
MT: Yes. Yeah, sorry, that answer was quick. Because particularly as somebody with a very apparent disability, your body becomes public space almost. People feel that it is appropriate to reach out and grab me, to pat my head.
I receive so much commentary about my body, whether or not I've asked for it. And I think it's particularly amplified because I'm a woman.
JM: What you mean by commentary?
MT: There was one morning where I was going to work and I was taking an Uber and I got into the Uber and the driver says, "You make life look hard."
MT: Yeah. I'll just have people walk up to me and say like, "How'd you get like that? What happened?" This happened recently. Right before quarantine started, I was just walking on the sidewalk and a woman stood right in front of me and just said, "You're doing so great." I was so taken aback, right? She was cheering me on because of this accomplishment. I had no idea what to do.
JM: When I’ve been on crutches, it’s opened my eyes to how inaccessible the world is. How do you do that, expand someone’s empathy, without needing to have health issues?
MT: There’s a lot of ways that you can teach empathy and I think it depends on who you're speaking with. Because the disability community is so large, everybody, if they're not disabled themselves, everybody knows someone with a disability. Whether it is your grandmother who doesn't identify as disabled, but she says things like, "I just can't hear as well as I used to." Or it's your cousin who had leukemia. Think about the people who you hold dear, what they experience on a daily basis.
One of the things that is a mantra for me is that everyone will become disabled if they're lucky enough. Aging is a privilege. Far too few of us get the opportunity to live to be a ripe old age. And if you do get the opportunity, you will likely become disabled.
There's a phrase in the disability community called temporarily able-bodied. So for somebody who's able-bodied, we might call them a TAB.
For me, disability is not necessarily a sign of weakness or a sign of a lack of competence. It is instead a sign of survival and resilience and strength. When I talk about disability pride, there are so many things that frustrate me on a daily basis. It takes me maybe 20 minutes on a good day to put on shoes. And I want to yell at my feet on a regular basis. But being frustrated and having those moments or having a moment where I fall and doubt my ability to live on my own, that's just a moment where I get to practice my pride.
I think that all of us have moments where we recognize our own mortality and our own humanity. And we try really hard not to get mad at ourselves and instead say, "I'm going to keep going." And that's very much what my disability experience has been like.
JM: You were pretty recently appointed the president and CEO of AAPD, the American Association of People with Disabilities. What has that first year been like for you?
MT: The first year has been a real journey for me. My background is in government and in public service. I spent 10 years in various government jobs before coming to this nonprofit and it's been a real shift. I'm used to being the person who's working with advocates like me saying, "OK, how do we get this policy to where you want it to be?" And now I'm the person saying, "You need to do your job and get this policy right". And it's a big shift.
This year in particular, 2020, is such a significant year for the disability community because it is the 30th anniversary of the Americans with Disabilities Act, there's the election, and there's also the census. I knew it would be daunting taking this position, but also the real honor and privilege it is to be a part of this organization in 2020.
One of the things that I love the most about AAPD is that we are a cross-disability organization. We're not focused on a specific disability experience. There's a lot of value in organizations that focus very exclusively on multiple sclerosis or deafness and there's real value in that kind of intercommunity work.
But our movement is strongest when we can all work together. I know that maybe sounds trite, but when we talk about the disability community being 61 million people strong in the United States, that's everybody. And sometimes doing that kind of cross-disability work is really tricky. Not everyone agrees. Sometimes there are, I like to call them, access conflicts.
A really good example are the bumps on the sidewalk at an intersection. They're there to provide a tactual cue to someone who is blind that the sidewalk is ending and the street is beginning. For someone like me who has really bad balance, I have to gear up to approach the bumps and not fall over. You can imagine what that kind of negotiation looks like from an advocacy perspective or policy perspective.
That's what I get to do every day. And I get to listen to what the community is experiencing across the country. I get to hear frustrations and celebration and it's amazing.
JM: The stat is that more than a third of LGBTQ+ adults have a disability? Can you help us make sense of why that number might be higher than the general population?
MT: I think that there's a variety of reasons that stat exists. The LGBT community also experiences higher rates of poverty and disability and poverty go hand in hand. Disability is both a cause and consequence of poverty. With poverty, you have less access to healthcare and food, which creates disability. Poverty creates disability. But when you are disabled, you often are forced into poverty because our systems require you to be poor in order to get access to healthcare or benefits that you need to survive. That's one part of it.
The other part, I think that a lot of people with disabilities understand that our bodies, our minds, may not operate in a standard way. So why does love? Why does connection? Why do relationships? I can't point to research on that, but I think that is part of it. I really do. And I think everyone craves human connection and people with disabilities are often denied that.