• Disability Pride: Representation is Only the First Step

    Ben Mattlin on Disability Rights Activists’ Ongoing Fight for Dignity

    In the summer of 2018, in the heart of bustling, jam-packed, pre-pandemic Times Square, a giant billboard for the skin-care brand Olay might have gone unnoticed. But for anyone who looked up and saw, anyone who knew, who understood, it was revolutionary. Over the words “too Defiant,” with too crossed out, was the luminous face of a rising young model named Jillian Mercado. A native new Yorker of Dominican descent, Mercado was born less than thirty years earlier with a variation of muscular dystrophy. (Later, on Instagram, she’d describe herself as “a Latinx model, who is queer af [as fuck] and happens to have a disability.”)

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    Five years before, she’d unexpectedly won an open modeling call for Diesel, the clothing brand that sells jeans starting at roughly $200 a pair. Campaigns for Nordstrom and Target followed. In 2016, she appeared in merchandising for Beyoncé’s world tour. Her career trajectory was meteoric, if unlikely. No one thought anyone who used a motorized wheelchair could go so far or so fast. No one had before. In the beauty business, some big-name companies had included plus-size and older models, but showcasing disability was unheard of.

    Soon after her work with Diesel and Nordstrom, Mercado signed with IMG Models, the agency that represented supermodels Kate Moss, Gisele Bündchen, and Heidi Klum. Following the Times Square splash, she was featured on a Teen Vogue cover and, later, did runway work at New York Fashion Week. Then she landed a supporting role in the Showtime series The L Word: Generation Q, moved to Los Angeles, and signed with Creative Artists Agency in Beverly Hills. “I had to prove myself,” Mercado shares, trying to explain her ambition and success. “I had to overcompensate to prove to them I was worthy. and thankfully the Diesel campaign went viral, so that helped tremendously.”

    These events may have been a convergence of coincidences, but something new appeared to be happening.

    It also opened a few doors for others.

    About a month before the Olay billboard, apparel retailer American Eagle boldly promoted its Aerie lingerie brand with an “empowerment” campaign featuring women we hadn’t seen before. One was Abby Sams, then just twenty, a bespectacled dark-haired Alabama native with muscular arms and a girl-next-door smile, seated in her wheelchair in a black lace bra and black leggings.

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    Another was Rajee Aerie (yes, her surname and the brand name are coincidentally the same), a glowing thirty-four-year-old Chicagoan in a camo-blue bralette and matching yoga pants, grinning rebelliously as she stood with crutches from childhood polio in India. A third was Gaylyn Henderson, a fit Atlanta resident, then thirty-three, looking calm and supremely self-assured in a navy blue bra and panties, brandishing a colostomy pouch. Yet another model wore an insulin pump. Some of the women had stretch marks; others had scars.

    “Aerie continues its ‘real’ streak, casting Models with Illnesses and Disabilities,” declared Adweek, noting that “new images feature women with health conditions.” Aerie later reported that its empowerment campaign helped generate double-digit sales growth in the first quarter of 2018 and took market share from rivals such as Victoria’s secret.

    The door was now more than ajar. In the summer of 2019, Aaron Rose Philip, a then eighteen-year-old transgender woman who uses a motorized wheelchair because of cerebral palsy (CP), appeared in ads for Sephora, Dove, and designer Marc Jacobs and in a Miley Cyrus video and on TBS’s Full Frontal with Samantha Bee. Philip had emigrated from the Caribbean nation of Antigua and Barbuda as an infant and gone through the New York public school system.

    Along the way, she’d snagged representation by Elite Model Management, the onetime home of Linda Evangelista, Monica Bellucci, and Tyra Banks. By the end of 2020, Philip became “the face of Moschino,” the Italian luxury fashion brand. Her star was rising at such a spectacular pace that, before this book was finished, she’d advanced to runway work and changed agencies.

    “To my knowledge, fashion has not been the most welcome space,” she says, “Even when it comes to things like race. So disability was definitely uncharted territory for the industry. Agencies didn’t embrace it until Jillian Mercado, until she had her Diesel campaign, which was major. After she did that and got signed, there was me.”

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    In October 2019, Abercrombie and Fitch—the retailer known for displaying only the sexiest of models—featured photos of author and Youtube sensation Shane Burcaw, then twenty-seven, who has spinal muscular atrophy (SMA), with his disabled fiancée, Hannah Aylward, twenty-four. They were part of the retailer’s rebranding for “diversity” and “inclusion”—words and concepts that have become such overused hallmarks of modern media, and, indeed, of the broader society, that at times you might wonder what they really mean.

    This is what they mean: something new that can redefine your view of “normal.”

    The trend is certainly not unique to fashion and advertising. In April 2019, just as the hit ABC sitcom Speechless—about a goofy yet “typical” family with a teenage son with CP—was canceled after its third season, Netflix launched a comedy series called Special, about the coming of age of a twenty-something gay man with CP. Written by and starring Ryan O’Connell, himself a gay man with CP, it lampooned his vain attempts to hide or at least minimize his disability, and introduced mainstream audiences to notions such as “internalized ableism”—a kind of self-hatred that many disabled people experience, based on an acceptance of society’s prejudices against those who have disabilities.

    What once might have been thought undesirable, even repulsive in some circles, was suddenly not just admirable but alluring.

    Not long after, Ali Stroker, a thirty-two-year-old paraplegic actor and singer, became the first wheelchair user to receive a Tony award. Her winning role for Broadway’s top prize wasn’t a little old retiring granny or an outcast such as Laura Wingfield, the disabled loner who pines for a gentleman caller in the Tennessee Williams classic The Glass Menagerie. Rather, she won for playing Ado Annie, the happy-go-lucky town flirt in the musical Oklahoma!

    For Stroker, a blonde powerhouse, it was the pinnacle of a career full of firsts. Paralyzed from the chest down due to a car accident at two years old, the mezzo-soprano was the first actor in a wheelchair to graduate from the theater training program at New York University. Stroker started gaining attention in 2012, at twenty-five, when she appeared on the reality TV competition The Glee Project. In 2015, she debuted on Broadway—the first actor in a wheelchair to do so—winning rave reviews for her role in a revival of Spring Awakening. After the Tony, she told the New York Times she felt excited and proud to be not just successful but a “symbol.”

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    Fast-forward to the spring of 2021. Crip Camp: A Disability Revolution, a documentary about the early days of the disability rights movement, co-directed by disabled filmmaker Jim LeBrecht, was nominated for an Oscar. Though it didn’t win, that year’s ceremony was the first in the Oscars’ ninety-two-year history to show several wheelchair users on the red carpet at the same time. It was also the first time the Oscars stage was ramped.

    The trend of high-profile disability inclusion even infiltrated politics. In January 2020, Ayanna Pressley—the first Black woman elected to congress from Massachusetts—announced she has a form of alopecia that causes complete hair loss. “I want to be freed from the secret and the shame that that secret carries with it,” she said, removing her wig. Afterward, she shared that her diagnosis was “an opportunity to shed light on disability issues.”

    Then, in late 2020, US Senator Tammy Duckworth, Democrat of Illinois—a woman of color whose legs were blown off in combat in Iraq—was on the short list to become Joe Biden’s vice presidential running mate. Though in the end she was not selected, it was an unprecedented degree of disability visibility in the highest spheres of power.

    These events may have been a convergence of coincidences, but something new appeared to be happening. The worlds of fashion, Hollywood, Broadway, and government seemed to be moving away from squeamishness about disabled people and toward acceptance—maybe even a readiness to celebrate them. Major businesses and media outlets had already sought to signal a deeper sense of equity and democratization, including more people of different ages, colors, gender identities, and sexual orientations, but now people of all shapes and body types and capabilities were demanding—and receiving—greater representation and conspicuousness. What once might have been thought undesirable, even repulsive in some circles, was suddenly not just admirable but alluring.

    This transformation was evident at the grassroots level, too, especially on social media. Instagram is now bursting with selfies of people with all kinds of disabilities, people who strut their stuff any way and anywhere they want. check #Disabledandcute, #WheelsnoHeels, #Disabled_Fashion, #Wheelie_Good_Life, #DisabilityIsDiversity, #JustaWheelchairGirl, and others to take in a steady stream of the hottest, most daring, most blatant expressions of disability moxie and glamour.

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    Young people with facial deformities, prosthetic limbs, tracheostomies attached to ventilators, or a combination of these, are posing at home, in busy marketplaces, at golden beachfront oases, in elegant urban settings, and on snowy mountaintops. They are laughing, kissing, dancing, shopping, eating and drinking, or just voguing in fabulous sundresses and cut-off jeans, in ball gowns and tuxedos, or in bikinis and sportswear. Youtube has multiple channels devoted to inter-abled couples, wheelchair “pimp my ride” techniques, Spinraza and Evrysdi diaries (referring to relatively new treatments for SMA), and critiques of stereotypical media portrayals. Some of the more inspiring or humorous YouTubers, such as Zach Anner, snag impressive endorsements. Anner, a comedic wheelchair-using entertainer with CP, starred in the Rollin’ with Zach series, which was broadcast on the Oprah Winfrey Network.

    The only thing these folks have in common is a beguiling mixture of unapologetic self-confidence and, perhaps, unabashed exhibitionism. Whatever their physical, sensory, psychological/emotional, or cognitive/intellectual capabilities; body shape; or appearance, they are saying, “Look at me!”

    All disabled people have at one time or another—probably many times—been called inspirational for just living our lives.

    These developments were particularly striking given the country’s sociopolitical climate during most of that time. Donald J. Trump was in the White House, a man who during the 2016 campaign made fun of a disabled journalist, New York Times reporter Serge Kovaleski, who has arthrogryposis, a genetic lack of muscular development and joint contractures. Trump’s mocking pantomime was shockingly offensive, though Kovaleski himself brushed it off, telling the press, “My strongest reaction to his behavior at that campaign event was pity—pity for Mr. Trump.”

    Trump also published a campaign manifesto called Crippled America, shamelessly wielding the c-word in a disparaging manner. In short order his administration slashed programs that benefit disabled Americans—including rescinding seventy-two policy documents related to the rights of disabled students, delaying a rule that required states to examine how well they serve minority students with disabilities, cutting nearly $1.5 trillion from Medicaid and $600 million from mental health and substance abuse treatment programs, and putting programs and services disabled people rely on “on the chopping block,” as Tom Ridge, then chairman of the National Organization on Disability, put it. Not all these proposals came to pass, but a very real fear was implanted in much of the disability community. Trump and his followers seemed intent on trying to turn our nation into an approximation of Leave It to Beaver, where everyone is white, middle class, cisgender, heterosexual, and most definitely not disabled.

    Altogether, whether they meant to or not, the breakout, pioneering disabled people in mainstream and social media, politics, and elsewhere were bucking the trend and defying traditional perceptions. They practically made disability feel cool. There was much press praising the models and performers as “inspirational.” But that’s the easy interpretation. It’s a cliché. All disabled people have at one time or another—probably many times—been called inspirational for just living our lives. Buying a quart of milk at the corner store is inspirational, apparently, if you happen to use a wheelchair or crutches or a service dog. This kind of attention can make going out for that quart of milk unpleasant. Sometimes folks just don’t have the energy—the “spoons,” to use the term coined by the writer Christine Miserandino, who has lupus—to be called “inspirational” one more time.

    Problem is, the alternatives can be worse: to be called “crippled.” to be talked down to as if a child. to be overlooked and ignored as if invisible.

    *

    I’m a lifelong wheelchair user, and my reaction to all this public disability is somewhat complicated. To me, these new celebs and cyber icons are just disabled people taking their rightful place at the adults’ table. They’re exhibiting body/mind positivity, an unabashed assertiveness in claiming their fair turn not just among the grown-ups, so to speak, but in the limelight, at center stage, on the front page, in the public eye. What’s amazing is that they’re not being blocked from doing it—or so discouraged by prejudice and other access barriers as to self-censor. By my lights, they exemplify disability pride.

    I was born with spinal muscular atrophy in 1962, which at the time was practically a death sentence. According to the National Institutes of Health, SMA refers to a group of hereditary conditions that deplete motor neurons, the cells that power activities such as walking, swallowing, and breathing. It’s really a kind of umbrella term because it describes a variety of related situations. I have what’s considered the intermediate variety, also known as Type II, meaning I first manifested symptoms as an infant. I was a “floppy baby,” unable to sit myself up and easily knocked over. I’ve never walked or stood, but my life expectancy nowadays is close to a non-disabled man’s, as long as I’m careful and remain lucky.

    One bad cold, however, could easily develop into a terminal case of pneumonia because I can’t cough with enough force to clear my lungs. SMA is progressive. I’m forever losing strength, though the deterioration is so gradual as to be noticeable only every ten years or so. Today, at nearly sixty, I can no longer hold a pencil or feed myself. I’m writing this with voice-recognition software. I’m not complaining. I have a pretty terrific “normal” life. My wife and I have been married for more than thirty years (and counting), and we have two daughters in their twenties. I’ve had every advantage. When I was growing up, my parents were open-minded and possessed the resources to procure all the medical, psychological, and technological assistance I required, and some I probably didn’t. They believed I could do or be anything I wanted when I grew up, and they made me believe it, too, at least till I got older and discovered it wasn’t quite true.

    How you define yourself in a world full of judgments and challenges can be vitally important. But your outcome depends, too, on your circumstances, your resources. Can you afford the supports you need to live a good life? And if you can afford them, do you have access to them? One day, when I was perhaps five, my parents introduced me to the jaunty songs of the British comedy team Flanders and Swann. I was struggling to memorize the months of the year, and they thought Flanders and Swann might help. Mom pulled out an old LP of the duo’s London revue called At the Drop of a Hat, which I believe she and Dad had seen performed live on an overseas trip before I was born. She put the needle down on the black vinyl disc. I was to pay particular attention to the opening number on side two, a track called “A Song of the Weather.”

    It was a sardonic lilt about climatic discomforts throughout the year, month after month. This is how I learned the months. Later, she told me that Michael Flanders—whose mellifluous baritone did most of the talking and singing—was in a wheelchair. He’d had polio as a young man. Of course, you couldn’t tell from the record. Even the album cover blurred his image. I still have it. It features a black-and-white photo of a burly, bearded man (Flanders) in the foreground and a high-foreheaded and bespectacled man (Donald Swann) seated behind him at a piano. Most of Flanders’s body—from his shoulders down—is covered by a superimposed image of piano keys.

    What’s amazing is that they’re not being blocked from doing it—or so discouraged by prejudice and other access barriers as to self-censor.

    As a child, I made nothing of the news of his disability, other than registering mild surprise. Mom was always pointing out successful disabled people to me. She told me about Christy Brown, the Irish writer and painter who could only control his left foot. She said that Bill Cullen, a frequent host and contestant on the TV game shows I loved, actually walked with a limp because he, too, had had polio, though you wouldn’t know it, thanks to strategic camera angles and editing. This information was supposed to give me hope and encouragement, but I never felt I needed either. I was kind of inspired by Ironside, though—the police procedural about a gruff chief detective in a wheelchair, played by the non-disabled Raymond Burr, which Mom recommended I watch.

    What my young mind gleaned from all these examples wasn’t so much the limitless possibilities for those of us with mobility impairments, as Mom no doubt intended; it was instead the need for or at least tradition of keeping disabilities at bay, covered up, unseen, private. I inadvertently picked up on a kind of disability code that was common then: minimize the impact, hide it, sweep it aside as a mere personal detail—and get on with your life.

    This, I see now, was the opposite of disability pride.

    These old impressions came flooding back to me as I witnessed what young disabled people are up to today. Perhaps things don’t have to be as they were anymore. Perhaps young disabled people are growing up in a different reality, with less restrictive expectations, more and better support systems, and a greater sense of entitlement. But how had that happened? How did we get to this point? I could not connect the dots.

    For many disabled folks, myself included, the kind of chutzpah these young people exhibit can be hard to muster. Most days are filled with slights and conundrums, unnecessary inconveniences, and unjust and possibly illegal encounters. At times, our lives feel hostage to the careful rationing of our wits, our wherewithal—the necessary “spoons” for calculating and recalculating how long till the van service shows up, say, or the next chance to pee in an accessible bathroom.

    Some problems involve our own minds and bodies, such as a rebellious limb that refuses to cooperate with the brain, or a brain that’s not wired to react to certain social cues and customs. Other problems involve the needlessly complex and often unfair social welfare system or the garden-variety architectural and attitudinal obstacles. The daily trials become familiar, in a sense. no big deal, unless and until something makes us want to scream. Makes us want to change the world.

    But there is a difference between wanting and doing. What had empowered today’s disabled people to bust loose from the strictures of the past? In truth, the disability community has always changed the world, or tried to, but maybe especially over the past half century. That’s partly because we’re living longer, healthier, more active lives than in years past. Today, the average person diagnosed with multiple sclerosis (MS) may live to nearly seventy-five, just seven years shy of the average for the non-MS population, whereas in the 1980s the survivability odds were much lower.

    Birth difficulties aren’t necessarily the tragedies they used to be either. In December 2018, for example, a baby girl in San Diego was born prematurely at just twenty-three weeks, instead of full-term at forty weeks, and weighed only 8.6 ounces—setting a new record and making her the world’s smallest living preemie ever. She will likely grow up with chronic illnesses and disabilities, but her life was not lost.

    Surviving premature births, accidents, illnesses, and congenital conditions to live longer and more active lives is a starting point. It’s helped create a critical mass of disabled people in society. When their combined energy—or outrage—boils up, changes get set in motion. For my generation of disabled people, the crowning achievement was the Americans with Disabilities Act of 1990, familiarly known as the ADA. It’s so monumental that the act is invariably preceded by the word “landmark.” The ADA made discrimination against disabled people illegal. It granted unprecedented equality and access and accommodations for nearly a quarter of the US population. It changed our national landscape.

    The ADA wasn’t the endpoint we supposed it to be; it was actually a beginning.

    People are now used to seeing wheelchairs, service animals, ramps, and sign language interpreters. This reappraisal of disabled people’s right to take part fully in society became the global standard, one that extends beyond national borders. Disability, after all, cuts across all nationalities, races, orientations, genders, socioeconomic groups, and religions—perhaps the most democratic of all minority cohorts. In 2006, the United Nations adopted a treaty called the Convention on the Rights of Persons with Disabilities (CRPD) that was designed to “promote, protect and ensure all human rights and fundamental freedoms for all persons with disabilities.” It’s a pledge, nothing more—a promise to extend rudimentary civil liberties to anyone with a disability. As of this writing, it’s been endorsed by 180 nations plus the European Union, but not the United States; President Barack Obama signed it in 2009, but so far the senate has failed to ratify it. That’s ironic, considering the CRPD was based on and inspired by the ADA.

    The ADA enabled disabled people to imagine a better, more open, more accepting tomorrow. The law made such a future seem almost within reach. “Never has the world of disabled people changed so fast,” wrote journalist Joseph Shapiro in his seminal text about the early days of disability rights, No Pity: People with Disabilities Forging a New Civil Rights Movement, published in 1993. “More disabled people are seeking jobs and greater daily participation in American life.”

    Yet, for all its strengths, the ADA did not—could not—guarantee fair play or full inclusion. It did not automatically change people’s attitudes or, in some cases, make institutions comply. Countless barriers to parity and full social involvement remain. Disability activists have had to keep going, keep advancing their agenda and their priorities because many disabled folks are still oppressed, struggling, suffering. Unemployment, poverty, loneliness, lack of access to needed medications and devices and medical care, even senseless ableist violence, remain hallmarks of life for many disabled people. “It’s one thing to have our rights,” says Judy Heumann, the polio survivor, author, and activist who is often called the mother of the disability rights movement, “but that doesn’t mean you have justice.”

    I came of age on the tail end of the effort to make the ADA happen. I closely, anxiously followed the progress of the better-known disability rights pioneers like Heumann. I wrote letters to senators, congressional representatives, and newspaper editors urging its passage. I went on protest marches. I gave testimony at a local community “hearing” about how I’d been discriminated against and why the law was so important. But then I got married and had kids. I lost touch with much of the disability community and the movement. While I wasn’t looking, everything changed, evolved.

    In the more than three decades since the ADA became law, a new generation of disabled people has come of age. They’ve seized the prerogatives my generation (and the ones before that) had fought for and they built on them, made them their own. They took the “greater daily participation” Shapiro referred to and doubled it, tripled it, pushed it in all kinds of ways and directions their forebears never would’ve thought possible. The ADA wasn’t the endpoint we supposed it to be; it was actually a beginning.

    ___________________________________

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

    Ben Mattlin
    Ben Mattlin
    Ben Mattlin is a journalist, essayist, and author. Born with spinal muscular atrophy, a congenital muscle weakness, he has been a lifelong wheelchair user. His books include Miracle Boy Grows Up and In Sickness and In Health. His work has appeared in the New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, and Vox, and on NPR. He lives in Los Angeles, California. Follow him on Twitter (@benmattlin).





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