Incapacity Pleasure: The Excessive Expectations of a New Era

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To get to work as communications director for a Philadelphia law firm, Imani Barbarin gets into her car – when the coronavirus pandemic doesn’t require work from home – and drives to a train station 20 minutes away.

There is one station closer to her house, just a two minute drive away. But Frau Barbarin, who suffers from cerebral palsy, walks with crutches; The nearby train station has no elevator and the steep steps are too difficult to climb.

Ms. Barbarin was born four months before the landmark Act on Americans with Disabilities went into effect in July 1990. She belongs to the ADA generation – at least 20 million people with disabilities, according to the US Census Bureau – who grew up knowing the transformative civil rights law as a birthright. They expect the law to guarantee, not just promise, that they will have access to transportation, workplaces, schools, and other public places and the same opportunities as everyone else.

Members of the ADA generation claim more quickly than before that disability is an integral part of identity – and they do so with pride. After all, the ADA has removed some of the stigma. Now, not only are people with obvious physical or sensory disabilities saying they are part of a civil rights movement for people with disabilities, but younger people and people with invisible disabilities as well. The ADA generation is more likely to reveal a learning disability, a chronic disease such as lupus or a psychiatric disability such as bipolar disorder.

Ms. Barbarin, 30, finds daily memories of how ADA is making her world easier: the fully accessible office buildings and restaurants, or simply the expectation that a woman with a disability will have the same opportunities to participate in everyday life.

There are also the markers that mock these heightened expectations. The ADA does not require that every old structure like this train station be upgraded for accessibility.

And then there was her job search. After graduating from high school, Ms. Barbarin sent hundreds of applications and announced that she had a disability. She didn’t get a single interview. She sent out more without mentioning her handicap and did so.

It is “discouraging,” said Ms. Barbarin, for people of her generation, “who feel that the ADA is the foundation of what our rights should be.” But we should get so much further. “

Ariella Barker, who was born with spinal muscle atrophy, says people often assume that civil rights laws give the disabled an advantage that they don’t. A classmate of Ms. Barker’s at Harvard’s Kennedy School told her that as a woman in a wheelchair she had the “golden ticket” for a good job.

However, high unemployment rates among people with disabilities persist even after ADA banned discrimination in the workplace. Only 31 percent of working-age people with disabilities had jobs last year, compared with 75 percent of people without disabilities, according to the U.S. Department of Labor. When she graduated with a Masters in Public Administration this May, Ms. Barker, who already had a law degree, couldn’t find the jobs she wanted and instead went back to an old one.

Long before the ADA, there were accepted roles for people with disabilities. They could be objects of compassion or inspiration. They didn’t want either.

Doron Dorfman, Associate Professor of Law at Syracuse University, argues that a new generation has grown up with an additional undesirable role – as objects of suspicion. The public knows little about the ADA or the prevalence of discrimination against people with disabilities, Dorfman says, and one result is what he calls “the fear of disability”.

People with disabilities constantly pay “a tax or a price”, he said, “this idea of ​​disability is and must always prove that they are actually disabled” and therefore deserves protection.

Ms. Barker, who lost her ability to walk at the age of 11, understands. One day when she was in law school she was at the cash register of an Atlanta clothing store holding a dress, pants, and a pair of tops. Another customer came up to her and said she was curious about the young woman in the wheelchair: “How do you have the money to buy all of this?” Asked the woman. “Did you injure yourself and sue someone?”

The ADA generation grew up expecting their rights, but instead found resentment – which sparked the need to push back further. “There are more of us who have grown up disabled and proud,” said Stephanie Woodward, 32, of Rochester, NY

Ms. Woodward, who was born with spina bifida, was 7 or 8 years old when she first heard about the ADA. She had just started using a wheelchair in school and a teacher complained that it was a safety risk. The next day her father went to ask for an apology. Her father – an electrician and a guy who pulls himself up on boot straps – brought up his daughter’s rights issue and announced that he would “find an ADA attorney. “This threat produced results. Ms. Woodward recalls the thought, “What is the ADA? As if I really had to know because it got such a reaction. “

Today Ms. Woodward is a disability rights advocate and activist. A popular photo showed her being arrested in a U.S. Senate office in June 2017. Her hands were cuffed behind the back of her pink wheelchair. She was arrested with members of the Adapt disability group protesting a Republican bill to repeal the Affordable Care Act.

For people with disabilities, access to health care can have life or death consequences. They were among the biggest beneficiaries of Obamacare, particularly Medicaid’s expansion. The readiness of activists, especially the younger ones, to be arrested and the impact they had on the Obamacare struggle strengthened their political power – at least among the Democrats. In particular, Joseph R. Biden Jr., the alleged Democratic presidential candidate, is now speaking of expanding home care for young and old with disabilities – a central theme in Ms. Woodward’s protests – as “just an absolute fundamental right”.

There is a long history of successful protests against disability rights. Judith Heumann, believed to be the movement’s founder, led a 26-day takeover of a federal building in San Francisco in 1977, prompting the Carter administration to enforce what is believed to be the forerunner of the ADA

This story is told in her recent essay, Being Heumann, and in the new Netflix documentary, Crip Camp .: A Disability Revolution. Ms. Heumann, who had polio as a child, is now 72 years old and mentor the up-and-coming generation of executives.

“The ADA generation wants their lives to benefit from ADA,” she said. “They also believe the ADA is not enough.”

The earlier generation modeled her movement on “the civil rights struggle of the 1960s and the women’s rights struggle of the 1970s,” said Maria Town, 33, who has cerebral palsy and is president and executive director of the American Association of People with Disabilities. Members of the ADA generation, she said, “are informed by the equality movement, the struggle for affordable care law and the Black Lives Matter movement.”

One result is that they have an expanded view of disability justice that includes other causes and other marginalized groups.

Keri Gray, 29, helped organize dozens of people with disabilities in a June protest outside the White House following the death of George Floyd with signs reading “Black Disabled Lives Matter.” Police work is also a disability issue for Ms. Gray, a diversity and inclusion counselor who lost a leg to childhood cancer. At least a third of people in American prisons and jails are disabled, according to the Justice Department.

She argues that disability and racial justice issues also include Covid-19. Blacks and Latinos have died in disproportionate numbers from the coronavirus, partly due to unequal access to health care and other reasons for their higher prevalence of pre-existing conditions – including disabilities such as diabetes and chronic lung disease.

There are more young people with disabilities today than in the past, or at least more who are ready to accept the label. According to the American College Health Association, nearly one in four college students today says they have been diagnosed with depression. That’s one in ten college students in 2000.

“It’s a perfect storm,” said Mary T. Hoban, the association’s chief researcher. Students are facing an exceptionally stressful world, she says: social media pressures, fears of school shootings, and the many disruptions from the pandemic. Much more seek mental health services than they used to, she says. One reason: The ADA removed the stigma of mental health problems by requiring schools to provide accommodation – like private rooms for testing or liberalized permission to take vacations.

Members of their ADA generation also use social media to meet and organize. Ari Ne’eman was 18 years old when he launched the Autistic Self Advocacy Network online in 2006 to challenge the prevailing narrative about autism propelled by parenting groups and researchers. For the most part, autism has been viewed as a tragedy and the answer as a cure.

For Mr. Ne’eman and other autistic people, this contradicted the evidence of their life, which was rich and fueled by the ambitions promised by the ADA. He and others wrote and organized to destroy the old images of autism. A recent academic study of newspaper content attributed a dramatic shift towards positive depictions of autistic life to their work.

Mr Ne’eman, now visiting scholar at the Lurie Institute for Disability Policy at Brandeis University, said, “It was important to me to find the autistic community online as it sent the message that you don’t really have to take as written Everything professionals say about you is true on stone tablets. “

This freedom to think big is what distinguishes the ADA generation most. After Micah helped Fialka-Feldman get his sister to their dormitory, he decided he wanted the dormitory life experience too. At that time, he took a two-hour bus ride to get to his program for students with intellectual disabilities and Down’s syndrome at a college outside Detroit. When the university said he couldn’t live on campus, he used the ADA to sue – and won in 2009.

Today he works as a teaching assistant at the School of Education at Syracuse University. He helps grade papers, reads student magazines, and speaks to prospective educators about what it’s like to have an intellectual disability.

“I sometimes wonder if I was born a different time, how different my life would be,” said 35-year-old Fialka-Feldman.

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