[Transcript of, "Parenting Without Pity: Heather", produced by Rooted in Rights] SPEAKER 1: Rooted in Rights is partnering with disabled parents to tell our stories of parenting without pity. SPEAKER 2: If I would've had parents that were aware of disability rights, it would've taken me less time to realize that, like, I could be a mom. SPEAKER 3: We have to have conversations we are not having. SPEAKER 4: There are real-world consequences to you not giving your kid the tools to understand where they are in America. SPEAKER 1: This is a space for disabled parents to talk parenting, and to offer compassionate and frank advice about what it means to raise a child with disabilities. In this episode, Program Director Anna Zivarts interviews Heather from Boston, Massachusetts. HEATHER: My name is Heather Watkins. I'm born and raised, educated in Boston, Massachusetts. Still live here. I live in a section of the city called Roslindale. I'm the first of three kids, 46 years old, and I have one daughter. She's 25, young adult. It's mind blowing to me, how time flies. 25. I didn't always use mobility aids. I was born with Muscular Dystrophy. And so for the most part, the most difficulty I had was going up the stairs, not really down. Gravity lent a hand there. Then getting off the floor, or running, or trying to hold heavy things. Started to manifest in more visible ways once I had my daughter, after I had her. There was lot of the weight bearing on the hips and the proximal distal muscles, where that was how my disability affected my body. So it became harder to go up and down the stairs. It was hard before, but it became more difficult. As time wore on, it started to affect my respiratory muscles, and so now I use what people use for sleep apnea, use a mechanical ventilator. Then I noticed that my concentration levels were off, prior to that news, being diagnosed with it having affecting the respiratory muscles. I had to shift my priorities, including work stoppage and things like that. You really figure out, "What does this really mean for me? What does disability mean to me? How do I respond to this challenge?" All while having a young daughter. So when I started to really think about all of those kinds of things, in this panic, because when you have a small child, and they're watching you, how you respond to challenge and change, to figure out a kind of new normal, and how to manage my feelings, but be realistic, too, because I don't want to put up this fake front. I did want to form a blueprint for this young child to follow, and be realistic with it, so that she could feel empowered to create her own sense of being in the world. Just be an example. So when I started thinking about, "Well, what are you passionate about? What do you like?" Because now I had more time, right? I'm at home, and I'm thinking about, since I had to reduce my work hours, and eventually stop all together, the thought of more doing advocacy, as related not only myself, my community, kept coming back to me. Driving around the neighborhood, and thinking about, "Hmm. Why is that building a bunch of stairs? How would someone like me get in there? How would I access that building?" Then I look over at another building and go, "There's another one, and another one." Seeing things as points of frustration. And then, this new sort of delicious ambition was born out of that. And that's how I got my start in disability advocacy. Those little seeds of frustration, mostly. ANNA: Prior to that advocacy awakening on your end, had you been connected to other disabled folks, or had relationships or mentorship, or was that something that you came to later? HEATHER: I came to that later. My only exposure, really, was outside of the community, when I would go to MDA sponsored camps, Muscular Dystrophy Association sponsored camps and events. And that's when I was able to really connect with other disabled folks, and seeing kids my own age, and connecting in that way. My parents weren't really connected to any support groups, or other disabled parents, and kids. That came much later, and I think, for me, that would have been really something that would have been so beneficial in many ways, in terms of self-awareness, and providing a mirror to seeing other folks, like myself, of color, who were both black and disabled. And again, at that time, it was more invisible, my disability. But still, I always knew that that little disabled symbol, I knew I was covered by that as well. But yeah, I think back now how my budding self-esteem, self-awareness would have been beneficially impacted had I known other people in real life, in my family, so we could connect with, not only as a support system, but sharing tips, maybe resources, frustrations. And another thing I think would have been very helpful is to see it across the media landscape. Growing up, when you're young, and you're flipping through beauty magazines, or watching a movie or a sitcom, I don't have to tell you, you don't really see people with disabilities in meaningful ways, and depicting comprehensive analysis of their life. And more often than not, you get these pity and pedestal binaries, these swings. And it's like, there's so much more to our lives than just those two overused trite narratives. Certainly, there are limitations, but the lens of limitations is not the only lens. We get all these incomplete stories. If we had more media that really depicts the nuance, the layered, wider lens of disability, how many more people would be impacted by that, and really see themselves out in the mainstream, not only empowered, but like, "Oh, okay. This is normal and not news worthy." ANNA: Did you feel, as a kid, there was pressure to pass as less disabled, or to try to hide or mask your disability? And at what point did you...it sounds like after your daughter was born, that became less of a pressure, or it just couldn't be a pressure anymore. Do you want to talk about that? As a kid, that wanting-to-fit-in feeling that I think a lot of us felt? HEATHER: Oh, yeah. Yeah, because a lot of your experience will be through the nondisabled gaze, so then your metrics for success will be set up that way. So had I had other people who were doing, or helping create this vision of myself, I keep thinking...I look back and I'm like, "Oh, well, I would have known that..." You know that saying, "A fish can't climb a tree?" Well, I wouldn't have been so hard on myself, trying to do the same things that many nondisabled people were doing. I wanted to get into more sports. I wanted to do those things, but if you're limited, and perhaps maybe something could have been adapted for you, then you still could have done the same things, not in the same way. So, yeah. Yeah, I definitely was impacted that way, by not having that strong peer support. That's what we all hope to create now, as advocates and activists, so people can create to be self-empowered, to have this agency, where they can go out, and do their own things, and create their own set of metrics, and stop comparing themselves to their nondisabled counterparts. ANNA: In the conversation that I was having with Keith, I think one of the issues we got into was that, often, in his advice to the African American parents who have disabled children, it's challenging to recommend, "Go to the disability community," because the disability community presents as so white, and disability is often seen as connected to whiteness, and there aren't enough black disabled folks in that community, in leadership positions. If you were to be giving advice to parents of a disabled kid, what would your advice be, as far as where to look, and where to find that sort of mentorship and role models that can bridge both those identities? HEATHER: Well, a lot of time, when I'm talking to people, I always try to make sure that I'm connecting everything to everything else. What I mean by that is that the disability community is not a disjointed demographic. We have connective tissue within the community. So we'll start, if I'm talking about disability in terms of being a black disabled woman, I know, automatically, that a lot of us have a harder time self-identifying as being disabled, because in our minds, that is just so layered. As a family, with a stigma, culture, religion. Those are just some of the things that might impact coming out and saying, "We actually have a disability." Once you start explaining that it's an identity marker and not an indictment, even breaking it down so much, word wise and word-origin wise, in an etymological sense, that the 'dis-' prefix is not only not 'not' and 'non,' but has a Latin and Greek derivative that means 'duo' and 'two,' hence, another way of being, doing in the world. then people kind of soften. So if you bring all of that together, in a few minutes, it's not going to happen instantaneously, but there's an awareness. Then the more exposure you have to other people who are self-identifying, then, in my own experience, I can say that the easier it becomes, in terms of self-transformation. In terms of outreach, and meeting other disabled folks, I know, for me, I had to do a lot of research. I started small, with local organizations. For instance, here in Boston, it was the Boston Center for Independent Living. We had these patches here. Then there was the Multicultural Independence Living Center of Boston. That has gotten absorbed. I was a part of that for a while. That was more focused towards people of color in different cultures. You can find patches of community resource centers where disabled people are more amass and things are centered for us. There's a more culturally sensitive response layered in with disability rights, which we need, because a lot of communities of color are also interdependent, so they're relying on multi-generational systems of support to keep us going. I'm a caregiver. My dad's here, but it's not all one way. He's helping me as well, physically, as well as I'm helping him to put together his health care plan, and coordinate all his team members here, to help him live a more productive life in his retirement years. And my daughter's here as well. So it's like, that approach is found in many communities of color, where people are often in need of care, caregivers, and community builders all at once, and not necessarily by choice, but just because you have to be. You're your own best advocate. And I hope that answered your question. ANNA: Yeah, no. And I guess, to dig a little bit further, do you think it's helpful...what I'm hearing is that you do think identifying as disabled for communities of color is something that is useful, because it allows for...can you talk about that a little? HEATHER: Yeah. I think that happens for each person, if at all. If they want to, at all. I think people should be allowed to self-identify as they will. And I started off even saying I was a person with a disability. Then I found that that changed to identity-first, with more exposure, to activist, because then it was like, "Oh!" I kept, in my mind, kept envisioning a car, sidelined with its hood up. And once you get involved with more advocates, and especially diverse circles of advocacy, then I was like, "Oh, it's so cool," because it was this reclamation of the word. It seems small, but it's actually huge, because it helped lift the cap off my own potential, and so there, I felt more encouraged to do more than just what I had envisioned, which was very small. Limited, in some ways. And the more I saw that thing modeled, then the more I saw myself leaving my old comfort zone. So that's why I think it's very...I love this whole idea of even talking about it. Other people will feel this sense of, "Oh, okay. I'm not alone in this." They're struggling, too. It's okay to struggle. It's okay to not feel so hot. It's okay to run the gamut in the range of all of your emotions, and not just be like, "I have a disability and this is it for me." No, no. Actually, there's quite a bit you can do. I remember being at a doctor's office one day, accompanying my dad, and I'm using the manual wheelchair. And another patient comes in and, "So, are you waiting to be seen?" I said, "No, I'm a caregiver." She says, "Well, how can that be? You're in a wheelchair." I said, "You can do a lot of things from a wheelchair. I'm here, coordinating all of his care." The look on her face was like, "Oh, wow." That's because her exposure to the disability community had been limited, and she had always seen herself in the opposite direction, just being a receiver of care, which is fine, to just be a receiver of care, but she hadn't been able to envision actually running the show from the other side. But that was because she had limited exposure to people in an active sense, in a mobilized way, doing things for beneficial change. And her lens, again, was through this nondisabled gaze. She was really...even in that short 10 minutes, talking to her, you could see her whole face relax. She was like, "Wow. Do you have a card, and I can follow up with you, and we can chat further?" Yeah. Just in that span of 10 minutes. Just that quick. So sometimes it's instant, and sometimes it's metered out over time, and people find themselves moving and shaping in different ways, as we all are. Evolution, it takes time for each person. It's going to be different. So I just meet people where they are, because they all have different places on the continuum of how they internalize their disability. That's okay. There's nothing wrong with that. I don't get upset when I come across people who have different places and spaces in their life, and what it means for them. I certainly don't speak to everyone with a disability, whether it's apparent, hidden, or chronic illness. I can only tell you about my experience going from invisible to more visible now. And so with that understanding, there's definitely more patience to see how people move through the different phases of disability. I don't deal with pain management. There are different layers there, too. I really just try to...one thing about being in these kinds of positions, is you learn to listen more. By listening, you can create these really, really good learning exchanges. That's what I think I value a lot, becoming involved in a more active sense, just to really listen to people, and understand people's lived experience. Just pay attention. Listen. Pay attention. You will learn so much. This is a community that is rife with so many rich personalities and different ways of being. And I feel like I learn all the time, every day. You know what I mean? So in that way, it just feels like such a blessing, because I would never have learned about so many different people, and how they choose to live, and how they really use all these adaptive ways of being in the world, that wasn't necessarily set up for disabled folks, as we know, structurally and systemically. We get by. We get by. It's a journey. It is a journey. ANNA: That was beautiful. I'm trying to stay quiet as you talk, so my voice isn't interjecting, but that was lovely. Do you have any advice, and I think everything you've said is advice, in some ways, but for parents of disabled children who are recently diagnosed, and the parents who are in that moment of freaking out, and grieving, and in that moment of panic that I think many nondisabled parents enter at one point? HEATHER: I love this question, because you're right. A lot of people do, because they still have that image of disability, and it being wracked with this stigma. Which, yeah, to some large degree, especially depending on what kind of disabilities you have, that exposure to other disabled folks who are living with that same disability, I think, is so key. Not only that disability, but many disabilities. So they can stop capping the potential of their child. There is going to be a range. You don't just meet one person with that disability. You meet more than one. You meet tons of people. Then you can create this idea, and this life for your child, where you can become better informed. If you're just leaning on your own understanding, and your own idea of disability, guess what? It's going to be limited. You can't exist in this vacuum. You have to be informed by other people who know this lane. It's disabled folks who know this lane, and those are folks who you should be listening to, and exposing your child to, in different ways, in different settings, family-friendly settings, where they can become used to. They also see that mirror, because that mirror is so important. If they're just thinking they're all out there by themselves, this disabled child, then you're going to feel pretty lonely. You need to know that people are living in the world with their disability and they're doing things. Again, it doesn't negate your humanity if you need help on a daily basis, or whether it's doled out sporadically. I tell people this all the time. You shouldn't have to remind society of it, but, sadly, you have to remind people. Just because you have a disability, it's not this static meaning to it. It's going to change for you over time, and you have to have this repeated exposure to people who have also lived this lane and lived this life. You don't have to necessarily expose them to activists, but it's a great, grand idea, because, at least in my experience, more of us have a more well-rounded way of understanding disability than just what we've seen on TV, where's it's this big, the idea of disability. That "woe is me" sadness and, on the other hand, "Super Crip", where everybody's building you up, and you're the barometer of success. "Well, if that person can do it, then what's your problem?" No, it's actually much bigger than that, the aspect of disability in my life. I guess very aspect of my life has been affected by my disability in some way. I'm talking about all the quality-of-life decisions, housing, health care, education, workplace environment, where you vote at, because it has to be accessible. That's pretty important. The way you're socialized, where you dine, where you shop. So we don't want to keep just this one idea of where and how your disability will be. Again, connective tissue, all in the community. We need to also relate it to historical figures. I think about how my awareness would have been impacted had I known about Harriet Tubman's disability. Sojourner Truth. Brad Lomax, out in the 504 sit-ins. All of these figures. Fannie Lou Hamer. I didn't know any of these people, who were black and disabled, had different disabilities, and how it impacted, and more than likely, it factored in the way they governed their lives. We want to be making sure we're telling our young people, and people who are newly disabled, what other people are doing out in the world with disabilities, for this to be a normalized part of the experience of living, because it is. I'm so grateful to be a part of this rich community that is so full of talent and resources. I tell people, you want disabled people on your planning boards, your schools, your neighborhoods, and the churches, your synagogues. You want them a part of your employment in your corporations, because of the rich lived experience, the out-of-the-box thinking, higher sensitivity level. We see things that might miss the nondisabled radar. We cover everything. Trust me, you want us on your boards. You want us there. We'll figure it out. We know analytics and logistics like nobody's business. We can tell you about all that kind of stuff. You're missing out on a valuable lens there, if you're talking about diversity but you leave out people with disabilities. I'm talking about a range of disabilities. So, yeah, that is one area that I think needs substantially improved, because it's 2019. I still come across people who are saying they're for and about disabilities, but then they have nobody in executive roles on their boards, or disabled. I'm like, "How are you 'for and about' again?" Just to create another small trajectory here. Yeah. I think it's all connected, but yeah, it's just things where we're still educating people on who and what disability looks like. So many people believe that it has just one look, when it's so nuanced. If I'm sitting in my car, in a accessible spot, sometimes I get these looks like, "Yeah, okay." A woman had come out of the store one day and she's like, "Yeah, right. You're handicapped," and I'm like, [scoffs] because people have this idea that there's only some looks, that either you're elderly, or you have, I don't know, you're supposed to have a frail look, whatever that means. People can't envision that you might be younger looking. You might use mobility aids. You might be a parent, using mobility aids, that we can get this thing done. That you could be a good parent. That you could love sex, sensuality. You could be into fashion. None of those things, by the way, are often juggled together. If you ever notice that. Sex, sensuality, pleasure, kink. They're never juggled together. Beauty, when you have disabilities. We have to...there's constant education in those areas. We like all of those things and more. SPEAKER 1: Parenting Without Pity is a storytelling resource of podcasts, videos, and blogs that honors the experience and knowledge of disabled parents. On the next episode, Lead Producer Clark Matthews and Program Director Anna Zivarts interview Steve from Bristol, Pennsylvania. STEVE: The most important thing for parents, to truly understand disability, is to have continuous positive exposure to disabled people. SPEAKER 1: You can find more from our Parenting Without Pity project at RootedinRights.org/Parents. [End of transcript]