Podcast

JILL: Welcome to the DisTopia podcast, where we look at Disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit. 

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the Disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of Disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into mellow ambient music]

HEATHER: My name is Heather Watkins. I’m a Boston-based disability rights advocate. I’m a mother. I was a caregiver for the last 11 years for my elderly father who passed away last summer. And I serve on a handful of disability-related boards and projects. I write and I speak and, you know, on occasion people ask me for my opinion on things in consultation. So, that’s been cool. Yeah, it’s an experience that, you know, all of that I use to help inform public and social policy on these boards and projects that I serve on.

CHRIS: There is more attention right now being given to the experience of Black and disabled people. And of course, that’s something that many have been fighting for. Are you feeling that as well? Are you sensing a shift at all in people’s willingness in terms of, including the media, their willingness to listen to your story?

HEATHER: Yeah. I mean, I think it’s a combination of things. I mean, personally, I’ve been isolating since mid-February. I was born with muscular dystrophy, and it impacts not only my mobility, but my respiratory muscles. So, I use what someone might use if they had sleep apnea. It’s actually right here. [chuckles] I don’t know if you could see it in the shot there. And so, I’m hyperaware of how this pandemic has been disproportionately affecting Black and brown folks, you know? That’s totally on my mind. Now we have what’s going on in terms of police brutality and people’s attention. ‘Cause I think it’s because everyone’s sitting and more focused, you know what I mean? And I think that is the difference. And it was back to back cases. So, we had the Breonna Taylor. We had Ahmaud Arbery….

JILL: George Floyd.

HEATHER: Yes! Yes. Right there on the tip of my tongue.

JILL: Yeah.

CHRIS: Yeah.

HEATHER: All of those things happening, you know. And so, I just think again, everyone’s attention was on it and the frustration and just the horror of seeing that video, which, it kept playing on repeat. Then it becomes like a snuff film, you know, and it just, the trauma is replayed. I think that was one of the things that just kind of brought it to a fever pitch. It had always been happening, but you have that combination of things. But we’re certainly feeling it in the disability community, especially Black and disabled folks, BIPOC folks, you know, Black Indigenous people of color. Yeah. So, it is something that is really at the forefront of our attention and the things that we’re grappling with every day.

CHRIS: And I think too, when Michael Hickson died—

HEATHER: Yes.

CHRIS: —you know, when that happened, I think for all of us, it was like, OK. Now it’s here. This in your face. You cannot deny what’s happening.

HEATHER: Yeah.

CHRIS: And yet, I think as activists and advocates, we’re always gonna be a little disappointed that people aren’t paying enough attention. But it does seem that we’re at a moment, you know.

HEATHER: Yeah.

CHRIS: It does seem that we’re at a moment.

HEATHER: And it’s scary, too, because, there’s a lot of distrust with the medical establishment going into hospital anyway. And you have the layer of race and disability and someone using a particular lens and metrics to decide what your quality of life will be, right? And so, his case it’s…it is so beyond disturbing. Not surprising, but beyond disturbing and alarming. And this is what we often talk about anyway, because it is so scary when you’re trying to negotiate that, and someone’s telling you, well, this person doesn’t have enough quality of life. When in fact, many disabled people who have so much range, complexity, nuance grapple with all these different types of mobility and varying degrees of disability every day and all the time, you know, using adaptations and higher sensitivity levels and analytical skills. We know our lives best, so listen to disabled folks instead of just using that one lens to determine what quality of life looks like and what it should be.

[mellow ambient music]

JILL: I’m curious how then, with all so much going on, what are you focusing your energies on? Because we’ve also read that you’re really good at or work hard at taking care of yourself, right?

HEATHER: I try.

JILL: Yeah, and so when there’s so much that overwhelms us, how are you sifting and filtering and choosing what’s important? And what are those things that you’re focusing on right now?

HEATHER: I mean, it’s hard. It’s a balance, particularly because my friend and helper, my PCA, they have not been around to help me since March ‘cause they tested positive. They also work in a group home. And so, there’s that other part of it where I could’ve been exposed as well. And they’re still in recovery, so I haven’t seen them. What has been helpful to me is just getting in a routine where I get up early and take a deep breath, make my bed, get out my food for the day, you know, for breakfast and lunch, put it aside, get on my laptop, go through my emails and see what’s going on. Trying to stay tapped in to the pulse of what’s going on in the disability community, not only locally, but nationally and globally. ‘Cause it’s good to develop a global disability lens perspective just in relation to what’s happening around you, see what people are doing. Because there is so much inaccessibility in so many sectors and areas, and it’s just good to be mindful of that.

But yeah, I think what’s been helpful to me is just kind of creating a routine and sticking to it: going to bed and not staying up all hours of the night, looking at the news, right, and going through articles. Because that that, you know, that does have an impact on your mental health! And so, that’s what’s been helpful to me, is sticking to that routine. I make sure I shut everything off at 11:30 and just go to bed. That’s what’s been going on for me right now. Aside from that, doing podcasts like this and writing. I published some things like through Medium and on my website, my blog site, SlowWalkersSeeMore and just kind of giving more of my lens and my lived experience. So, that’s what I’ve been doing.

CHRIS: Yeah! I wonder if we can talk about that lens. I should say right away that you and I share muscular dystrophy.

HEATHER: Oh!

CHRIS: I also have muscular dystrophy and I have a form called spinal muscular atrophy. So I’m in a wheelchair and it’s a little different. But I certainly we have a body echo, you know, that we can probably hear within each other. But I think we came across this chapter in a book that you wrote called Thank God I Have Muscular Dystrophy. Could you tell our listeners a little bit about that? Because I think it gives us a lot of insight into your lens, like you said.

HEATHER: Sure. By the way, I wrote that let me see, I think like seven, eight years ago. I probably would’ve done a whole lot more work on that piece. It was like I put it together and then here you go!

CHRIS: [chuckles]

HEATHER: And so, when I look back at it now, I’m like, aw, yeah! Lemme do some more work on that. But to answer your question, I said, “Thank God,” because I started to look at my life in more of a comprehensive sense. ‘Cause prior to that, I had always thought of disability as being burdensome and through the lens of limitations only. And it wasn’t until I started getting involved with more mobilized folks who had disabilities. ‘Cause prior to that, I didn’t really have that much exposure to that, and because of that, I wasn’t able to be beneficially impacted that way. Growing up, nobody in my family has a physical disability. No one had muscular dystrophy. No one that I saw in my own neighborhood and community. The only time I had exposure to that was when I went to the MDA camps in the summertime or to an MDA event—Muscular Dystrophy Association event—which was great! But even then, you know, I saw one person at the summer camp who was Black. One person! And all of the events and services in the camps were outside of my community. They’d be in New Hampshire or Connecticut. So, the messaging there was like, you have to go outside of your community ‘cause there’s no outreach being done here and nothing that you can relate to.

And I think that had I had that a lot earlier, then I would’ve had a more well-rounded self-awareness at that time. Because you need to know that. You need to know in History books. You need to know throughout high school who is it that you admire or even who can provide a mirror for validation. So, I just think about how my budding self-awareness, you know, my teen years, how that might have been stretched further, the lens widened had I known. Like we learn about Harriet Tubman, but we needed to dig deeper. We needed to know more like Sojourner Truth. We needed to know about Brad Lomax and the 504 sit-ins with the Black Panthers, and Fannie Lou Hamer. I didn’t know. You know what I mean? All of these people had disabilities. It was an important factor in their lives and how they governed their lives. I think when you present it that way, then a light bulb goes off. You don’t see disabilities as such, you know, from the prism of limitations lens only. It’s more well-rounded, and it fits in the context of your life instead of just being like this pity or pedestal, you know, sadness and supercrip.

And so, when I started to think about that and write this story, I started to think about how it benefited me. Because disabilities, as you know, permeates every aspect of your lived experience: housing, healthcare, education, employment, where you live, shop, dine, socialize, how you vote, and it’s certainly affected my parenting. And so, I wanted to kinda capture that by saying, well, thank God I have muscular dystrophy, because otherwise who would I be without having this life experience?

JILL: I love it, Heather. What you’re offering is the work that you’ve done and the way that you talk is different than it sounds like you grew up with. I’m curious, with that being said, were there people in your life that helped you in your own journey?

HEATHER: I mean, I think growing up, I always had strong role models like my mother and then my father’s mother ‘cause I don’t have the benefit of meeting my maternal grandmother. My mother’s mother died when she was only 13, and she’s the oldest of six. So, on my father’s side, the strong black woman from Greenwood, Mississippi who raised nine children. And so, she was the one who actually diagnosed, not formally, but saying, “Ah, I think maybe there’s something that may be going on there that we need to look into more.” Whereas the doctors were saying to my mother, “No, she’s just a fragile child. She’ll grow out of it, you know. Just give her some time.” My grandmother insisted, you know, you need to really press that a little bit further. Long story short, I ended up getting diagnosed through Boston Children’s Hospital. But yeah, I just feel like I’ve been bookended by strong women that way, even including my own daughter who’s a young adult.

Although they didn’t identify as having a disability, my mother had a learning disability, and she also has a mental health disability that she was diagnosed later in life. And then my grandmother had a hidden disability: heart disease, diabetes. So, and it’s harder for people, many people of color, especially in the Black community, to really identify that way because of that lens and stigma, culture, family, religion. It’s not limited to that, but that also plays a part. But they were nonetheless strong role models for me, and so that was one portion of my life. But then, like I said, when I got involved in advocacy circles, and specifically diverse advocacy circles, where I was meeting more Black disabled folks and more people of color, that just, it started to lift the cap off of my own potential and how I saw myself.

And I was like, oh, OK. You know, getting exposed to all these people who were participating in protest march, petition drives, and all these other many different brands of activism. Because obviously, those are one or two brands, but there are so many others when you write and you speak. And I wanted to connect the dots. I’m like, OK. Well, this makes sense that so much of what I’ve gone through can now be used to help others. And then I started thinking about that self-investment and how the ripple effect of that is: once you do that, you’re helpful to your family and you’re then helpful to your community. And I started seeing it as that little pebble that you throw out over the pond, and you see that cascade of the effect and how potentially beneficial it could be in so many regards. So, I started to expand how I saw myself. And I can say to this day, I learn every day and all the time. Because there’s no one way to be disabled or to look disabled. And I find that just so refreshing. I find it wildly exciting that I get to learn about somebody else’s lived experience that doesn’t mirror my own, you know.

[mellow ambient music]

JILL: Can you talk a bit about the integration of being Black and disabled? Often in community, people are talking about one group or the other.

HEATHER: Yeah.

JILL: And I’m curious, is there tension there? I’m just wondering how you navigate conversations and community.

HEATHER: Sure. I mean, disability is pretty prevalent in a lot of communities of color. When you consider that one out of five—a lot of people are saying one out of four—people have a disability, and then that’s 20% of the population. Black folks are 13% of the population. So, at that nexus is gonna be a high degree of disabilities, whether it’s non-apparent, apparent, or some form of chronic illness. So, it was always there. But it’s not often talked about in that regard where it affects so many aspects of your quality of life. It’s more talked about as in needing to be fixed all the time, as a lot of the conversations do when we’re talking about disability. So, a lot of people, you know, someone would see me and they’d say, “What are you, and what happened to you?” So, it was really, you know, when I got to that point where I could say, “I’m a Black disabled woman” and say that with pride, instead of, “Oh, well, I was born with a birth defect.” Like your language starts to change because you start to see yourself in this greater lens and capacity.

And it’s not that my life doesn’t have any frustrations. It’s just that they’re now in context. You know, that’s not all it is. It’s a part of my entire experience. So, yeah, to navigate that space and saying putting those two things together, we really need to be having more conversations where people understand how your disability is more. It’s also contributing instead of something taking away. And that’s a lot of our conversations, even in our own community, are sounding like something’s being taken away. But that’s only part of the story; it’s not the entire story. We need to keep having those conversations where we’re widening that lens and letting people know, yes, you have a disability. But guess what? This can take place over here. You can increase your own self-awareness by doing this. So, just to keep having those conversations and providing those examples, I think, has been helpful not only to me, but I’ve heard that echoed throughout the Black disability community.

CHRIS: Just sorta building off of that, do you ever feel like you have to hide one of those identities or highlight one more than the other?

HEATHER: I think people already know when they see me walking with a cane that there’s a disability. The other one, people may not know because sometimes I may appear ambiguous. So, they might see me as a person of color, but not necessarily a Black woman because of some curly hair and lighter complected skin, you know? So, there’s an awareness there for sure. But that, internally, has never wavered for me. I always knew what I was, especially culturally, ‘cause that’s how I grew up, you know what I mean? And it’s never been something that I’ve shied away from. Because I couldn’t. I mean, I’ve not always used mobility aids, even though I was born with muscular dystrophy. But I always had difficulty walking up the stairs, running, walking fast, carrying, lifting heavy things. So, you knew there might be an issue or something going on there. You’d figure that out. People who’d get curious would always ask, “Aw, well, what happened there? What’s going on?” And depending on the day and who’s asking, I might oblige them an answer. I might not. You know what I mean? It’s a tricky subject, right, that line. ‘Cause it can be annoying depending upon the day.

JILL: You’ve mentioned a couple, I just like to pull out words. You’ve talked about the language choices, I mean, that people use, and that you were raised within a culture.

HEATHER: Yeah.

JILL: So, there’s two aspects there. It can’t help but make me think about the Communications degree and what led you into Communications and hearing that story.

HEATHER: Well, I always liked to write. I always was fond of journals and diaries and things like that. And I think what led me to take on that major is taking that Creative Writing course with a particular teacher in high school. And then she said, you know, “I think you ought to check out Emerson College.” And then I was like, oh, OK. Well, I hadn’t thought about it before, but then I did. And then I was fascinated with just writing period and talking. And so, it all came together in that way. And lo and behold, it’s been pretty useful [chuckles], that Communications degree and major just in developing, like you said, this language, which is always evolving. The more people you talk to, the more books you read, you find that your language and when you speak and the way you see yourself grows. And so, that’s what I found even within the disability community. At first I was saying, you know, I’m a person with a disability because that sounded good. But then I realized I don’t have to remind people that I’m a person. What the hell? You know, I can say “disabled” and that I have a disability and be fine with that. But that wasn’t something that happened overnight. It was an evolution.

I like that it was a slower process because the more I talked to people and I saw how empowering that was and how people were so mobilized in that political way, then that meant something to me besides this language, which I often thought of like was like this throwaway language: handicapped. Back in the day, that’s how— We were referring to, my grandmother would say, “Oh, you’re handicapped, but you’re healthy.” So, we don’t use that language anymore, “handicapped.” Sometimes you might hear it in reference to parking, but it’s pretty much phased out for the most part. You know, every now and then you might get someone from a different generation, older generation, who may refer to disabled folks in that way. And then you can either choose to correct or not, depending upon the setting and where you are and how much time you got on your hands. [laughs] ‘Cause it can be frustrating.

JILL: Yeah. So, the forever educator.

HEATHER: Yes. Always. Always. No matter where you are, it’s like, you know, even when I was making funeral preparations for my dad, I’d find myself educating folks because there wasn’t an accessible restroom. And so, I was negotiating them bringing in a mobile unit so that I could relieve myself. And I’m thinking, that’s not just for me. It’s, I don’t know who’s coming, who might need an accessible restroom, and they want to attend this what we call homegoing. And that was beneficial ‘cause yeah, there were multiple people who showed up with canes. And otherwise, they’d have to go down a flight of stairs to get to the restroom. So, yeah. It’s like the most surprising ways show up where you have to constantly be educating people. Almost 30 years after the ADA has been passed! And you think by now this would be a given and these would be conversations that you can put to rest and that you can go outdoors and not give another thought to the fact that you will be able to relieve yourself. Which then leads me into another area where a lot of us do what we call pee math, where you’re calculating your solid food and liquid intake ‘cause you don’t know if you’re going to be able to relieve yourself in an inaccessible restaurant. Yeah, it’s the balancing act that so many disabled persons do just to do basic things that a lot of non-disabled folks take for granted.

CHRIS: And that non-stop presence of being the educator, does that get to you? How does that make you feel? It’s on one hand a great honor, but it’s also a burden, right?

HEATHER: Yeah, I mean, at times. It depends, like I said on the day, the hormones, the amount of spoons and energy I have for that day and who’s asking. If small children, someone ask in a curious, “Oh, why does she walk like that?!” You know what I mean? You can kind of provide some education there. With other folks, who are kind of saying things flippantly, maybe you might not have as much energy and wanna give much tutelage there. Just for the most part, I don’t mind doing some education and meeting people where they are ‘cause I think that’s important. I can’t throw out a Disability 501 to people who won’t understand what that means. Like, I start at a basic level for people after I gauge how much they know about the disability community, and then I work my way from there. So, I kinda take it on a case-by-case basis. It can definitely be tedious and a pain in the ass on any given day. [laughs]

JILL: That’s for sure.

[mellow ambient music]

JILL: You mentioned your role as both caregiver and recipient of caregiving.

HEATHER: Yeah.

JILL: Curious if you could go a little bit more into that and how it’s been impacted during the pandemic. I think it’s an important conversation, the interdependence and the relationships that are formed between carers and recipients.

HEATHER: Yeah, I mean, I like to say that I’m a person in need of care, a caregiver, and a community builder all at once. And you redact any part of that bio, then you reduce my community visibility and my contributions. While I need the care, at the same time, I was providing care to my dad. But that also helped because that made me a more in tune caregiver to his needs. But he wasn’t also just on the receiving end. He was an integral part of the family, helping me out just as much because he was providing the physical care whereas I was providing healthcare management, meal prep, you know, formulating his care team who were coming in and out of the house and doctor’s appointments and things like that. So, really organizing a lot of the stuff he was doing. Whereas he’d come in, and I’d say he was my kitchen buddy when I’m cooking and my sounding board. And that elder wisdom when it was needed and comedic relief ‘cause he was such a charming, funny guy, you know. So, there was that, as you said, that interdependence that helped make the family successful in that way. And it’s so critical. And it’s not unusual for so many families of color who live multigenerational and in close quarters and help one another out that way.

And I was really grateful that my daughter got a chance to have her grandfather in the house for so long. I guess it just made me feel like a kid again, having my dad under the same roof as an adult and us eating meals together and just hanging out and running errands. And it really made me just think about the brevity of life and then my own mortality. So, I think it’s just the considerations there for the details and that granularity and how it fits in to life itself is, it just seems so, on one hand, poetic. And then it just really expanded, again, my whole view of life, and I’m grateful for that experience mothering and at the same time, at one point I was fostering my nephew too. It was a crowded house! But having that lens of being in need of care and caregiving was lending itself to all of those different roles. So, they kinda folded into each one.

CHRIS: You talk about your kid. You’ve done some writing about being a disabled parent. What’s your line on disabled parenting? In other words, how did that come to develop.

HEATHER: When she was born, I was a parent who was hyper-concerned with safety. You know, I didn’t have the support system composed of other disabled parents, which I think is critical. Because you need to swap tips and resources and frustrations, ‘cause that’s important. And because of that, I kept seeing myself as, you know, in that capacity of, oh, I just I wanna make sure she’s safe. But then it would put you in that sort of paranoid state. So, the first few years, we’d be indoors a lot because I was so afraid that once she got able to walk and run, she’d take off! But she never really did that. She kinda stuck by me. And so, these ideas I was feeding myself weren’t really true because your kids kinda develop the system and respond to your energy that you’re putting out. She stuck on my side all the time. I mean, her dad was more of the physical parent who’d run and jump and play and do the playground stuff. And then he became her AAU basketball coach. So, that’s great. He did all of that stuff. And then I was the parent that kinda really forged that emotional bond and made her more emotionally intelligent and aware. Because we had all these conversations over the years that were age appropriate about life and just really understanding other people and creating empathy.

And so, that’s where I think the disability was a really big factor in being intentional and doing mindful parenting, which is another brand of activism, right? ‘Cause if you’re preparing your kid for life beyond you, then you do have to be really mindful in all of the choices that you make, but also in creating a blueprint for what life looks like, as the same sex parent. And even though she and I don’t actually identify the same way because although we’re cisgendered, she identifies as a member of the LGBTQIA community. And I wanted to make sure that, again, going back to my own self-investment, how would that affect her? How does responding to challenges, different kinds of challenges—not that I was thinking of just my own disability as that way, as a challenge—but just life in general, what does that look like to little eyes? And I think the disability was the thing that I was really, really considering from all different points of view so that she could have a better, more nuanced understanding. Not that she had to be a clone of me, but I wanted to empower her that way so that she could figure that stuff out on her own and live more authentically. Yeah.

CHRIS: And have you seen that manifest in her own personality and the things that she fights for as well?

HEATHER: Oh, yes. She’s very out and proud. She has like a budding rap career. She writes. She’s pretty confident, you know. So, I might’ve done something right there because, yeah, she’s not one to filter her expressions, and she’s no wallflower. Let’s just say that. So, yeah. I think maybe all those conversations might’ve paid off in some way. And she goes after what she believes in. If there’s an opportunity, she’s not gonna shy away from it. She just grabs it. You know, I like that. I like that she’s this sensitive person that really considers other people but doesn’t sidestep her own tuggings, her own nudges, you know. Yeah.

JILL: Yeah, you sound really proud of her.

HEATHER: I am.

[mellow ambient music]

JILL: So, what is on your mind that you’d like to share still?

HEATHER: Since we’re talking about things that are affecting so many of us, I often get drawn back to all of the conversations that take place or don’t take place across the media landscape and how disabled persons aren’t really talked about in meaningful ways and multifaceted ways, as actualized beings. It’s too often we—again, going back to that point of the pity and the pedestal, you know, the sadness and the super crip—we don’t really talk about disabled persons in juggling beauty, sex, sensuality, sexuality, kink, right? Where are all those? We know those conversations are happening, but why aren’t we seeing those played out across screens and in scripts that can be better informed by disabled persons, right? That’s what I’d like to see, because the reason being is those conversations should never stay static. They should have legs. They should move, because that not only affects the individual but the collective consciousness, right? And then when people hold backwards and negative beliefs, they can make their way into policies, bad policies that affect quality of life. Now, how could a lawmaker’s vision of what quality of life looks like from a disabled person’s point of view if they don’t know about it? If it’s not commonplace, if it’s not normalized that you can run a company and a household.

I’ve run board meetings from my bed and my whole household. So, we know there are so many adaptive skills that could be applied to many settings. You want disabled persons on your planning boards, right? You want us on your planning boards because of the amount of skills there, the analytical skills, the logistical skills, the higher sensitivity levels, the stuff that we hone in on these details that you would not believe! So, you want us in your classrooms, your corporations, in your churches and in your community settings. You want that voice and not just one voice, not in any tokenized way. You want different kinds of disabled persons that have overlap and intersect with all other marginalized identities. That’s important because it’s reflective of what society is. You know, we keep getting the same visions all the time. And that’s not, it’s not true. We need more voices coming out that you don’t often hear. And even voices that no one’s ever heard of. We need to have that awareness, that level of awareness raised ‘cause does have an impact and effect.

CHRIS: Do you think the younger generation of disabled people are able or are being equipped to sorta take up that fight?

HEATHER: I think so. They’re pretty mobilized, the ADA generation. They’re pretty tough! I mean, I think of the Keah Browns, you know, the Vilissa Thompsons. I mean, they are really out there fighting. They’re doing some great work and so many others that are just front and center and even not. I mean, there are other voices that are just writing great poetry and speaking. And I’m really impressed. I love it. And I love just learning about more and more people, whether it’s online, whether I meet them. You know, mostly I’m meeting them online, obviously, these days. But the ones that I’ve met in years past at events and things like that, I’m really encouraged by so much chutzpah and wherewithal. I just feel like I wasn’t that composed in my teens and put together. And they are just about that life. [laughs] They’re really going and grabbing the bull by the horns and doing this thing. So, very, very encouraged by that. Yeah.

JILL: Yeah, I would agree. The people that we’re talking to, we’re blown away by some of the younger advocates and activists that are doing the work.

HEATHER: Yeah, and I know you speak to Keith too, didn’t you?

JILL: Yes! How did you get connected with Leroy and Keith?

HEATHER: Online, I think through Facebook and because of just sharing different articles. I think he came across probably something I wrote or maybe an interview or something. And then he said, hey, let me interview you. And then that was maybe six years ago I think. You know, time flies so much now. I’m losing track of the years, but yeah, it’s been a while. They have a different way of navigating the world too, as darker-skinned Black males who have disabilities. And so, they’ve taught me so much more about that. Well, not that I didn’t know, but it’s good when you hear the activism from that point of view with regard to police brutality, prison reform, and so many other aspects that they’re contending with. I mean, Leroy has done so much in terms of chronicling those articles since the ‘80s. So, we would always chat up about things like that, from San Francisco Bay Area. But I think it was born in New York. I might have that wrong, but he has some roots on the East Coast too. So, it was kind of nice to gauge his journey. And we both served on local disability commissions, because I was chairperson of the Boston Mayor’s Commission Advisory Board. I did that for like seven years, with the last two years spent as board president. That was cool.

I started doing that in like 2009. I was really green to the process. So, I had no idea what Robert’s Rule of Orders were! [laughs] Like, who’s Robert? He’s pretty rude. How come he didn’t introduce himself? Who the hell is Robert?! Somebody tell me who’s Robert? [laughs] So, I mean, so you may wanna pull new advocates aside and explain little quirks like that so we are not left out and wondering who the hell these people are.

CHRIS: Yeah, right.

HEATHER: Yeah.

CHRIS: Oh my goodness. Isn’t that the truth? We get caught up in the details of making things efficient, making things efficient.

HEATHER: Yes!

CHRIS: And then we forget that knowledge and understanding is as important as getting through something. So, yeah.

HEATHER: That’s so true.

[mellow ambient music]

CHRIS: Really awesome to hear your story and to hear your, yeah, your guiding principles. But is there anything else that we wanna make sure we talk about?

HEATHER: Going forward, when we think about the ADA and a couple weeks ago, I had the honor of presenting on Crip Camp. I don’t know if either of you have seen the Crip Camp movie, and it’s just fabulous, right? And then now—

CHRIS: And yes, it’s a life changer, man.

HEATHER: Yes!

CHRIS: Yeah, yeah, yeah.

HEATHER: Yes. And also, they had the Crip Camp Virtual Experience.

CHRIS: Yes, yes.

HEATHER: Have you all seen that as well? Basically what it is, is every Sunday at 5:00 p.m. on the East Coast and 2:00 p.m. on the West Coast and Pacific Time, they have these series of talks. And so, one of them on June 14th, I had the honor of doing with Patrick Cokley and Anita Cameron, and these are two other Black disabled folks. We talked about the history of Black disability activism. And so, that was a real treat. Patrick did a PowerPoint and then I talked about Fannie Lou Hamer and then Anita Cameron talked about her experience as an ADAPTer and her, you know, how many arrests she’s gotten. Like at least 135 arrests since the ‘80ss and. And so, to give all of that experience was a real treat. So, now here we are, 30 years after the Americans with Disabilities Act passed. I was 17 when it passed, a junior in high school. I had no idea what the hell that was, you know what I mean? Because nobody was talking about it. And I didn’t learn about it until I think I was in college.

So, it was a few years later when people were talking about it. Because you had to have everything implemented within that seven years. So, then at first, going to college in the Back Bay, Boston where there’s a bunch of brownstones, stairs with no railings. You get inside: there’s no elevators. You go into one building where there’s stairs, but not even a door with a window. So, someone coming out could smack you with the door. Then you get inside the door, you got to go upstairs to get to the elevator. Lovely! So, it’s things like that. And then—

CHRIS: Yeah, God forbid you gotta use the bathroom.

HEATHER: Oh, yes.

CHRIS: Right, right, right. [laughs]

HEATHER: And then this particular elevator had the nice little gate where you had to pull shit aside. If I had a wheelchair at that time, obviously, I wouldn’t have been able to get to it. But then I wouldn’t be able to fit in the little elevator with the little swing gate. So, you know, slowly over the years, it started to, my classes were transferred to the buildings that were closer to Boston Commons. ‘Cause then they had more buildings that were updated and accessible. And that’s really when I started to hear more and more about the ADA. But I didn’t hear about its full impact really until I got mobilized in advocacy circles, so. And what was one of the great classes I took in 2005 was through the Massachusetts Office on Disabilities. They have like a two-day CAM training, which is Community Access Monitor training. And they just kind of do a brief overview of the ADA and teaching you how to survey buildings. So, that was helpful. But yeah, prior to that, it was like, I hadn’t heard much about it, not in school or anything like that. So, to see these things realized now and what the ADA means, and although it’s largely focused on legislative stuff and not so much on disability justice, those principles outlined by Patty Burnham and the Sins Invalid folks. Because even to have that expansion and understanding of that blueprint and framework is just what we need to be centered on, obviously now, and I think that’s the focus that 30 years later. And obviously, it should’ve happened before then, but I think that is where we need to really be focused now, on the disability justice aspects of it. So, that’s what I would say.

JILL: I’m wondering how many kids have heard of ADA?

HEATHER: Yeah.

JILL: How many learn about it in schools?

HEATHER: I’d be surprised to learn too. I would be.

JILL: Mmhmm.

HEATHER: ‘Cause like I said, you know, how often is disability brought up in the History class?

CHRIS: Mmhmm.

HEATHER: I hadn’t heard of it other than those few examples. And then it was just not really how disability affected how people govern their lives.

CHRIS: Mmhmm, mmhmm.

HEATHER: So, yeah. I’m kinda curious to find out how people are, like you said, if they are learning it at all.

JILL: Yeah, I have a feeling we know the answer. [chuckles]

HEATHER: Mmhmm, mmhmm.

CHRIS: [laughs] Yeah. Yeah, unfortunately.

JILL: But I hope if what you’re saying, the shift towards disability justice, maybe that shift will be enough to make it be more relevant. And Crip Camp.

HEATHER: Yeah, yeah. Which I think there—

JILL: People realizing there’s, yeah, there’s a history that many people don’t know.

HEATHER: Yes! Yes.

CHRIS: I was even thinking though, when I think we’re mostly all the same age here, but we were all in high school when the ADA happened. I never heard about it. Never.

JILL: I had no idea.

CHRIS: Yeah, yeah. That’s weird.

HEATHER: That’s wild, right?

CHRIS: The only thing I remember, I remember being a sophomore in college, and something came up about the ADA. And some woman said, “Oh, did you hear that you have a new name? People are, now legally, the government’s using ‘Americans with disabilities’,” ‘cause that came a couple of years later. [chuckles] And my response was, “I usually just go by Chris, but, you know, whatever.” But so, I remember there was these odd little things, but it was never like, “Wow, this legislation, Chris, is gonna change your life.”

HEATHER: Yeah.

CHRIS: Never. Never heard that.

HEATHER: And that’s a shame!

CHRIS: Well, yeah.

HEATHER: Because it’s a key piece of legislation.

CHRIS: Totally. Totally. Yeah. [mellow ambient music plays through the next few lines] Wow. Well, thank you for spending some time with us. It’s been so nice, Heather.

HEATHER: Thank you. It’s been my pleasure.

Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.

Music in the episode: “Pink Gradient” by Podington Bear. (Source FreeMusicArchive.org. Licensed under a Attribution-NonCommercial 3.0 International License.)