Passing for “able” is the goal of many people with disabilities, they know the disabilities label is stigmatized

US Rep. Jim Langevin

By  Alison Fairbrother, Woman Up Politics Daily – When Adam described his fall, it sounded like something out of the opening sequence of a “House” episode.

Walking along Sixth Avenue eating a falafel out of wax paper, he suddenly lost control of his muscles and tumbled to the ground, writhing around in unbelievable pain, scattering bits of pickle and lettuce through the street among stunned onlookers. Ten long seconds later, he got up and walked away, feeling thoroughly humiliated.

Adam, a relative whose name I have changed to protect his privacy, has a recently diagnosed neurological condition that is chronic but controllable. As a result of this incident, Adam saw a number of specialists at the behest of my family — for whom the common cold is generally a thing of alarm. The specialists assured us that he should be able to live a relatively normal life if he is meticulous about taking the strong medication he has been prescribed.  

We have known about the ailment for a year. It turns out that Adam has known about it his entire life. He’d been skillfully hiding symptoms since he was a boy.

Now on daily medication, the physical effects are under control. But when I spoke to Adam about it recently, he was shaken. “Alison, don’t you understand?” he asked. “Now I have a condition.”

His comment reveals something profound about the way we view disabilities in this country: Disability is seen as a private matter, a personal problem that a disabled individual struggles to negotiate in a world of “normal” people, rather than a social or political issue.

From a very young age, Adam intuited that it would be better for him to obscure his ailment than report it, risking the marginalization that might result. Hiding it until he physically couldn’t seemed the best way to protect his normality.

As he grew and became a man, fully capable of expressing himself in the world, his resolve to keep quiet was only strengthened. Though his physical symptoms had been manifesting for years, they became a “condition” only when others were aware of them, at which point he began to get a complex emotional bundle of pity, sympathy and fear from friends and family.

I am ashamed of my initial response to Adam’s “coming out.” Instead of immediately expressing my support, I felt betrayed. Adam and I were close, I thought, and I was devastated that he hadn’t confided in me, that he didn’t want the comfort and assurance I felt I was eager and willing to give. I felt I didn’t know him. Elements of his personality that had always been mysterious, I began to see as psychological effects of living with his condition.

Now I realize that Adam didn’t want me to fawn over him, or think of him as inseparable from his condition. He didn’t want me to re-evaluate the puzzling elements of his character based on this medical anomaly. My initial response was confirmation of what he already knew: that knowledge of his condition would mark people’s perceptions of him, create an irrevocable label to go along with his incurable condition.

Last week our nation celebrated the 20^th anniversary of the Americans With Disabilities Act. The last major piece of civil rights legislation to be passed, the ADA gave disabled Americans legal protections against discrimination, guaranteeing equal opportunity in employment, transportation and public services.

It’s hard to believe that it has been only 20 years since the U.S. government recognized that disabled Americans have human rights that deserve protection.

Media coverage of the anniversary focused on how far we’ve come since 1990. Rep. Jim Langevin (D-R.I.), a quadriplegic, presided over the House for the first time to mark the occasion. Langevin spoke movingly about the changes he’s witnessed in his lifetime, from his years as a student at Rhode Island College, a school he attended because it was the only one on his list that could accommodate his disability.

“Today, students no longer have to make choices about their education based on ramps and doorway width,” he said. “They can make these choices based on the same criteria their peers use – the quality of education and the dreams they want to pursue.”

Though substantial progress has been made in education attainment for people with disabilities, other indicators suggest that there are still numerous roadblocks to equality.

Only 21 percent of all working-age disabled people are employed, compared with 59 percent of people without disabilities, according to a 2010 survey conducted by the National Organization on Disability in conjunction with the Kessler Foundation. Nearly half of people with disabilities (43 percent) reported they have experienced some form of job discrimination in their lifetimes. People with disabilities are more than twice as likely to be living in poverty than people without disabilities, and are significantly less likely to socialize with friends, relatives, or neighbors.

Strikingly, the survey reveals that 61percent of disabled people believe that the Americans With Disabilities Act has made no difference in their lives. This despite Obama’s ceremonial remarks that called the legislation “one of the most comprehensive civil rights bills in the history of the country.” In a television ad to support a new executive order aimed at increasing employment of people with disabilities in federal jobs, Obama said that the act had guaranteed “every person the right to live, work and participate fully in the American experience.”

Legally, this may be true.

But how do social attitudes toward disability continue to determine how visible disabilities are? How accounted for? How respected?

My sense is that able-bodied Americans conceptualize disability a a single thing — blindness, for example, or war amputation — as opposed to the stunning array of disabilities, both physical and mental, that exist for countless Americans, and the degree of severity that lies on a spectrum from severely incapacitating to extremely subtle.

A friend of mine who took a disability-studies course in college told me of an activity that changed her perspective on the disability spectrum. A classmate went around to each person in the room asking, “What is your disability?”

Some answered “fibromyalgia,” “autism,” “spinal cord injury,” “blindness.”

Others said, “I have no disability.”

Still other able-bodied individuals, picking up on the nature of the exercise, thought to answer “jealousy,” “laziness” or “anger.”

The text of the Americans With Disabilities Act defines disability as “a physical or mental impairment that substantially limits one or more major life activities of such individual.”

Surely we have all experienced a disability — broadly defined — that has impeded one or more of our major life activities, which include “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating and working.”

The blog FWD/Forward (feminists with disabilities for a way forward), taught me the term “temporarily able-bodied.” This is not meant to be interpreted as a prediction that able-bodied individuals will become disabled, but rather to offer a more inclusive expression that recognizes the diverse spectrum of disabilities, allowing individuals who are able-bodied to identify with the reality that disability affects us all. The term forces able-bodied people to put aside our own fears of becoming disabled, and focus on that which unites rather than separates us as people with a range of experiences and aspirations who face innumerable challenges.

The ADA anniversary has helped me think critically about the extent to which there exists a supportive community on the other side of the “coming-out” process for someone like Adam, and how I can be an active part of that supportive community, even if I still don’t know exactly what that support looks like.

Is the appropriate response to acknowledge his condition or to ignore it? To attend doctor’s appointments with him or pretend that he doesn’t have to see specialists and submit himself for tests and studies that I’ve never had to endure? Remind him to take his potent medication that is full of life-altering side effects, or hope he remembers without my help?

Allison Fairbrother

Adam doesn’t know the answer to these questions either, but with time, I believe that he and I will negotiate something that works for us. I am scared I’ll make mistakes and offend him. I’m afraid that I will risk allowing how I’ve been socialized to see disability get in the way of true support and compassion, but I love him, and I want to surmount the same social conditions that forced Adam to pass for able-bodied all these years, risking his health, and suffering in silence.