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What I Learned from the Generation of Disabled Activists Who Came After Me

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Over the past several decades—even before the Americans with Disability Act (ADA) of 1990, and more emphatically ever since—the idea of disability shifted from a medical signifier to an emblem of cultural identity. People will tell you, in various ways, “Don’t say I have ‘special needs’ or am ‘physically challenged.’ Don’t even call me a ‘person with a disability.’ I’m a disabled person”—with disabled first and foremost, imparting an unapologetic pride.

Pride in disability isn’t new—there have been Disability Pride Parades at least since the early 1990s—but the language preference and the culture and identity shift it reflects are new. At least, to me. My generation of activists preferred “person first” language, which is why the law isn’t called the Disabled Americans Act. Clunky and awkward as it sounds, the phrase “people with disabilities” became the standard. It emphasized our humanity, we thought.

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But the new generation has pointed out the error in that kind of thinking—that putting “disabled” first is a badge of honor. In fact, it’s become so widely accepted that it practically feels required. No hesitancy or shyness allowed.

As a lifelong disabled person, I’m ashamed to admit that I struggled a bit to embrace this concept.

***

I was born 60 years ago with a form of spinal muscular atrophy, a progressive neuromuscular weakness. I’ve never walked or stood. Today, I no longer have the strength to feed myself or hold a pencil; I’m writing this with voice-recognition software. My increasing weakness is not something I like, but if I think about it, I realize that that doesn’t mean I’d prefer to be nondisabled. I like myself, I like my life, and I honestly can’t imagine existing in any other way. I’m not ashamed of my disability. But am I culturally disabled? Do I want to proclaim my disability as a primary identity marker?

Read More: 30 Years After a Landmark Disability Law, the Fight for Access and Equality Continues

When I was growing up in the 1960s and ‘70s, my parents insisted I could be anything I wanted when I grew up. It wasn’t true, of course, but this was a much better message than the unwittingly heartless prognosis of gloom and doom that some of my peers received. My mom and dad went to great pains to make sure my upbringing was as “normal”—or at least similar to my nondisabled brother’s—as possible. For instance, they fought to have me mainstreamed in regular schools years before the integration of disabled students became law. As a result, I never knew other “handicapped kids,” as we were called then.

It wasn’t until I was in college that I heard about the disability rights movement. It so happened that the very year I graduated from high school, 1980, was the deadline for institutions that receive federal funds—including private colleges and universities with federal tuition grants and scholarships—to become accessible (per the Rehabilitation Act of 1973). These new rules wouldn’t have happened without the perseverance of disability activists. But at that point I had no interest in becoming one of them. I figured I wasn’t the activist type, but the truth is I didn’t want to associate with other crips.

Something happened after graduation, though—or rather, didn’t. I couldn’t find a job. My prospects looked good on paper but not in person, apparently. In interview after interview, potential employers’ jaws dropped when they met me face-to-face. Confronted with so much rejection, I began to feel kinship with the disability rights brigade. Slogans such as “Build Access For ALL!” and “I can’t even get to the BACK of the bus!” started ringing true for me. The righteous rage didn’t seem so outlandish or radical anymore; on the contrary, these activists were modern-day visionaries! They understood aspects of my life that I’d never quite cottoned to myself. How could restaurants and stores get away with refusing me service, claiming that my presence might upset other customers? Why should I feel grateful if allowed the same courtesies as anyone else? Why must I harbor guilt about my limitations and requirements?

In memory, I was rarely confronted with outright rudeness. But attitudinal barriers (not to mention architectural ones) were everywhere. Inaccessibility and ableist bigotry—terms I was learning to get the hang of—truly did more harm than my muscle atrophy.

Over the next few years, I wrote letters to Congress and newspaper editors. I went to group meetings and protest demonstrations. Any chance I got, I gave “testimony” about how I’d faced discrimination. The July morning when the ADA was signed into law, I was glued to the live TV coverage. I couldn’t believe our ideas had become reality. I was 27 years old and had never felt more awestruck or validated.

***

Not long after, my wife and I had kids and got busy with the rest of our lives. I never landed a full-time job (until 2022), but I managed to eke out a meager income as a freelance writer. In time, many of my friends from the movement died. Advocacy fell behind me. I didn’t exactly become complacent, but I knew that I had rights and if I had to assert them, I would. I enjoyed a degree of security in that knowledge. But I thought that perhaps disability activism had died out with my generation.

I was wrong.

About five years ago, I began noticing billboards and glossy magazine covers with visibly disabled models on them. Then TV comedies such as ABC’s “Speechless” and Netflix’s “Special” with visibly disabled actors were earning critical acclaim and high enough audience share to be renewed for another season. Wheelchair-using actor Ali Stroker won a Tony for portraying the town flirt, Ado Annie, in the musical Oklahoma!, which had never been cast that way before.

Somehow, while I wasn’t looking, a new generation had made incredible progress. They’d taken the rights my peers and predecessors fought for and made them their own in ways I’d never imagined. American Eagle boldly promoted its Aerie lingerie brand with an “empowerment” campaign featuring women with insulin pumps, colostomy pouches, and prostatic limbs. On social media, everyday disabled folks were posting selfies that plainly displayed their wheelchairs, crutches, facial deformities, tracheostomies, or a combination of these, posing at home, in busy marketplaces, at golden beachfront oases, in elegant urban settings, and on snowy mountaintops—laughing, kissing, dancing, shopping, eating and drinking, or just voguing. Hashtags such as #DisabledAndCute, #WheelsNoHeels, and #DisabledFashion expressed their blatant moxie. They’d achieved a degree of self-confidence that even their prophetic forebears hadn’t dreamed possible.

How had this happened? It was as if, by confirming that we were in reality a discriminated-against class of citizens, a profound upswelling of expectations and norms had been set in motion. It had fired up the younger generation’s courage even as it had, in drips and drabs, upended society.

Many events in disability history have happened since the ADA. Ironically, much of this post-ADA progress had to do with addressing the shortcomings of the movement I had known. We—my “cohort”—overlooked so many types of people. We scarcely acknowledged the contributions of nonwhite and queer or non-binary disabled folks, and the intersectional intolerances they face to this day. We were often dismissive of neurodiversity and other less visible conditions, prompting the rise of autistic self-advocacy networks. Still more pockets of disability that had been marginalized or erased from the broader narrative began laying claim to full inclusion and parity, such as those with emotional disabilities and chronic illnesses.

To comprehend how disabled Americans can make up more than 61 million souls, according to the CDC, or roughly 26% of the adult population, you have to recognize that we include the half-million Americans who contract Lyme disease annually, 1.2 million Americans who are HIV-positive, 1.5 million Americans with lupus, and between 7 million and 23 million COVID-19 long-haulers, among many others.

Read More: Doctors with Disabilities Push for Change as Long COVID Affects Their Workforce

This broader, more diverse, and inclusive sense of who and what comprises the disability community, does not blur boundaries. Rather, it only makes us a deeper, richer, fuller, and frankly all the more compelling culture. The severity of my own disability certainly made me a full-fledged member of cripdom, but I’ve come to realize that my experiences are not necessarily typical for the group.

***

“What’s wrong with that kid?” I heard repeatedly growing up.

Other children were always pointing, staring, questioning. They weren’t bullying, not exactly, and I guess I now understand their curiosity. But that kind of attention is something you don’t forget. I tried my best to ignore these interruptions, these incursions. If I’m honest, I wanted to minimize my disability the way every successful disabled role model I knew of at the time did. Ironside was my favorite show. Like that grumpy, indomitable, wheelchair-using police detective Robert T. Ironside, I wanted to get on with my life—and hope nobody noticed my wheelchair, curved spine, or soggy-hotdog arms.

But that was impossible.

“Tell them you have amyotonia,” my mother advised.

Amyotonia was my diagnosis before doctors had settled on spinal muscular atrophy; it’s a fancy, nonspecific term for muscle weakness. She might as well have asked me to recite a Hamlet soliloquy.

“If it’s easier, just tell them you can’t walk,” said Mom.

I tried. I didn’t like saying it. It sounded defeatist. I tried making it come out neutral, almost clinical, never pitiful. Sometimes this admission just brought more queries. “Why can’t you walk? Did you get hurt? I’ll bet you fell down. Will you get better soon?”

The endless questioning made me feel like an exhibit in the museum. Mom kept insisting I be truthful and brave, not confrontational, but I didn’t like having the job of explaining my existence to strangers. “Tell them you were born this way,” she suggested next.

Those words weren’t hard to say. They were truthful, straightforward, easy to pronounce. And somehow that worked! No more follow-up inquiries!

In the more than half-century since, I’ve come to understand why that simple declaration satisfied my curious onlookers. Even if my disability had come later—if I hadn’t been born this way—the simple declarative statement communicated that nothing was wrong. I could as easily have said, “I just am this way” or “This is the way I am.” I think that was my mother’s point. My disability was nothing to shy away from or be embarrassed about.

But lately, I’ve come to see that my disability is about more than myself. It’s a connection to a deep, multi-layered heritage. I am inextricably linked to an enduring community of all colors, shapes, sizes, castes, ethnicities, orientations, and capabilities. A community that not only contributes to society but has always done so, often despite impossible odds. Embracing disability as an ennobling marker of kinship is almost inevitable once you start appreciating the connection it gives you to this complex, tenacious crew. To put it another way, the more I know about my disabled peers and ancestors, the better I feel about being a member of the club.

So in this sense, yes, I am culturally disabled. It’s part of my identity, something I feel deep in my bones. Being culturally disabled not only means I’m proud of the way I am, it also tells me I’m not alone.

Excerpted from Disability Pride: Dispatches from a Post-ADA World by Ben Mattlin. Copyright © 2022 by Ben Mattlin. Used with permission of the publisher, Beacon Press. All rights reserved.

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