In the opening to Disability Pride: Dispatches from a Post-ADA World, Ben Mattlin notes that when he was born with spinal muscular atrophy in 1962, the condition was practically a death sentence. Sixty years later, Mattlin and thousands of others with SMA and other disabilities are not only alive, but part of a vibrant disability culture. Mattlin, a longtime contributor to New Mobility, wrote Disability Pride to better understand how disability culture evolved, where it sits today and where it might be going next.

More than three decades since the passage of the ADA, a new generation of disabled people has come of age. In this context, Mattlin explores a wide range of topics, including how attitudes toward disability have changed, the rise of disability activism and the movement’s shortcomings — particularly the poor acknowledgment of nonwhite and LGBTQIA+ advocates in the struggle for disability justice. Chapters on neurodiversity, systemic ableism in healthcare, the right-to-die movement and the struggle for deinstitutionalization provide a well-rounded read for anyone looking to deepen their perspective on longstanding issues that the community faces to this day.

Excerpt:

What is Pride — and Why Does it Matter?

For many people, disability pride remains a slippery, subjective concept; it connotes different things to different folks at different times. Pride in our accomplishments? Pride in our identity? Is it like gay/queer pride? Black pride? This lack of specificity may be surprising considering it’s not really a new concept to the movement. In the early 1990s, Ed Roberts reflected that before he could go about trying to change the world, he had to alter his attitude about himself as a ventilator- and wheelchair-using polio survivor. He had to become proud of who and what he was. Around the same time, the disabled writer Laura Hershey published a poem called “You Get Proud by Practicing” that became a kind of anthem, helping people understand how to achieve a healthy self-acceptance. It spoke directly to the shame and embarrassment many disabled people feel about their “broken bodies” or lack of a spouse or money or a job.

But what are the limits and the benefits of this post-ADA identification with disability pride? Eli Clare, a Vermont-based author, essayist and poet who describes himself as “white, disabled, and genderqueer,” writes in an essay called “Shame and Pride” that pride is sometimes used by marginalized communities as an act of resistance. “We’ve rejected the idea that our body-minds are broken. We’ve learned lessons from the Black Power movement of the 1960s and the slogan ‘Black Is Beautiful.’ We’ve rallied around the value of pride,” writes Clare.

Emily Ladau, author of Demystifying Disability: What to Know, What to Say, and How to Be an Ally, says that disability pride is “not an isolated thing. It’s more like a shared cultural identity.” Born after the ADA became law, she is a past winner of the Paul G. Hearne emerging Leader award for up-and-comers in the disability movement. She uses a wheelchair because she has Larsen syndrome, a genetic condition that can cause dislocations of the joints and other hand and foot abnormalities.

Ladau cohosts The Accessible Stall podcast — a (mostly) monthly production where she and her cohost debate and explore a variety of current issues — and, for a number of years, Ladau edited Rooted in Rights, a blog that highlights authentic, progressive disability perspectives “through an intersectional lens,” or, as Ladau says, it “showcases perspectives that don’t always get the mainstream attention they deserve.”

Ladau’s mother and uncle also have Larsen syndrome, which she says was important for giving her role models when she was growing up. That’s rare. As the scholar Jennifer Natalya Fink observes, disabled children are often relegated to an other status, their disabilities regarded as personal traumas they and their families must cope with, rather than ordinary experiences. “Despite the fact that one-fifth of all the planet’s people are formally recognized as disabled, meaning that more or less everyone else is related to a person with a disability, we continue to construct our sense of family and its lineage in such a way that we are stunned, shocked and traumatized by the incredibly common, collective and familial experience of disability,” writes Fink.

Q&A with the Author

Teal Sherer: As someone who writes about disability representation in media, I appreciate that the inclusion of wheelchair users in advertisements, on TV shows, and on Broadway inspired you to write the book. Can you tell us what you saw?

Ben Mattlin: It really was about five years ago when model and actor Jillian Mercado was on a big billboard in Times Square for the skin care brand Olay. Then, one after another, I began to see visibly disabled people representing cosmetic companies and high fashion on glossy magazine covers. Around the same time, there was the show Speechless, and Ali Stroker won the Tony. All of a sudden, disabled people were breaking the barriers in Hollywood, on Broadway and in high fashion and I thought, wow, what’s going on? After the ADA was passed 32 years ago, I got married and we had kids, and I lost touch with the disability community. I realized a generation has come of age, with these rights, protections and expectations of being able to participate in society.

TS: Disability Pride is not only the title of the book — you have also dedicated a chapter to it, and it’s a thread throughout. Is there anything you learned about disability pride that you didn’t know going into it?

BM: I thought disability pride was about not feeling ashamed. That it was about loving yourself and self-esteem. I realized by the end of writing the book, that there was another aspect. Once you get to know more about the breadth and depth of the disability community — all that it does and has always done, often without any recognition and a lot of it erased from history — you almost can’t help feeling proud to be to be part of that club. So, that was something kind of profound.

TS: In the introduction, you write: “I am not trying to represent the entirety of cripdom. As a white, heterosexual, cisgender man, I couldn’t if I tried.” With that awareness, how did you approach researching and writing the book?

BM: I wanted to be as broad and inclusive as I could be. To kind of keep myself out of it and to amplify other people’s voices or their words or however they express themselves. I put on my reporter hat. The hardest pieces to write were the two chapters in the middle. The ones on neurodiversity and intersectionality — communities of color, queer and disabled, and so forth. I am not part of those groups, though I am an ally. At first, I felt a little awkward. Like, should I not be doing this at all? But I couldn’t exclude them either. These are important parts of the disability community. I tried not to speak for them but rather designated space for members of those communities to relate their own perspectives.

TS: In addition to Disability Pride, you have written two other books — Miracle Boy Grows Up and In Sickness and in Health. You have also written for publications like The New York Times, The Washington Post and Los Angeles Times. What advice do you have for aspiring writers?

BM: The best advice I ever got when I was starting out was to write and write and write. How else can anybody know what you are capable of? For the first draft, throw everything you know into it. Don’t self-edit. Just get it all in there. When you revise, then you cut out the bad stuff and polish up the good stuff. I liked getting to know other writers and reached out to some of my writing heroes — most were accommodating and friendly. It helped me feel connected to the writing community, and then later if I was looking for blurbs or referrals to agents or whatever, it was useful to have made those connections.

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Authentic disabled role models can be crucial for helping disabled kids — and newly disabled adults — build pride. In mainstream media, there aren’t many, and the few who do exist are far outnumbered by nondisabled icons, which can be counterproductive for disability pride, reinforcing unrealistic expectations of attractiveness and acceptability.

Surprisingly, Ladau says her personal convictions about disability pride solidified when she got to know more people with different types of disabilities. “It was really when I started to find myself surrounded by a lot of other disabled people, when I chose to surround myself with the disability community,” she says. “By doing so, I understood I wasn’t alone. That’s when I was able to foster this stronger sense of identity and pride.”

Excerpted from Disability Pride: Dispatches from a Post-ADA World by Ben Mattlin (Beacon Press, 2022). Reprinted with permission from Beacon Press.