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The American Disabilities Act, and a Fall That Opened My Eyes

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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 20th 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 61 percent 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 as 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?

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.
Filed Under: Woman Up, Medicine

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26 Comments

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julie1a

Hey, I've started writing a blog that chronicles my life with spina bifida. Check it out at:http://juliekatherineantos.wordpress.com/

August 13 2010 at 6:27 PM Report abuse rate up rate down Reply
Janet

There’s an uplifting film from HBO for those of us who had Polio or others with a “DIFFERENT ability” and not “disability.’ View the HBO film, WARM SPRINGS in which Kenneth Branagh portrays President Franklin Delano Roosevelt. This URL takes you to it FREE. You can download it or watch it online. http://www.nyalines.com/watch-movie-online-/watch-Warm-Springs-movie-free-online/ It boosts your morale! President Roosevelt contracted the Poliovirus at age 39. It devastated him; however, a friend talked him into going to “swim” therapy in Warm Springs Georgia for its mineral springs. These minerals literally keep you buoyant and able to stand free if you cannot. I know. I had surgery at THE GEORGIA WARM SPRINGS FOUNDATION, one of many legacies’. His love for Warm Springs, Georgia found him at the “Little White House” there than in Washington. Now it’s open to anyone that needs this therapy. The waters are wonderful. The “not yet president,” found that (paraphrased) “mind over matter” was what counts and the “only Thing We Have to Fear Is Fear Itself.” Regardless, what party you affiliate yourself, President Roosevelt was a great man in himself. WARM SPRINGS, the film teaches us all “we have brains and should have pride of worth.” We do NOT have “disabilities” but “DIFFERENT abilities!” It’s hard to think this when the bills come. I know. I’m on Social Security Disability BUT the day will come for us all…a GRAND one!

August 03 2010 at 1:05 PM Report abuse rate up rate down Reply
tara*

As a disabled person myself, I can fully relate to "Adam" in his desire to keep it to himself. People treat you differently, even if they don't mean to. Even your final questions in this article are indicative of your changed mindset where he is concerned. Asking if you should be involved in his daily routine in dealing with this disability of his by involving yourself in his doctor's appointments, medication schedule, etc., makes me want to ask if you would be thinking this is appropriate if his condition were high blood pressure or or an elevated cholesterol count. Would you make it your business to "remind" him to take his blood pressure medications, or would you assume he's responsible enough to handle it on his own? I would assume the latter would be the most likely scenario, so why would you expect any less with this condition? Quit viewing him as an invalid who can't function without your support, and wait for him to ask you for your assistance when it's needed. The hardest part about being disabled is the conspicuousness about it. If people would just quit pretending that a disability is a defining aspect of a person, things would be a lot better. I don't see someone defining another because their eyes are a certain color or they have a square jaw instead of a pointy jaw, so why define someone because they need a wheelchair or a seeing eye dog to get around? It's just ONE aspect of who and what we are. Quit pretending that it is ALL we are.

August 03 2010 at 11:21 AM Report abuse +1 rate up rate down Reply
ty

If anything it's hurt the possibility disabled of being hired. Like ladydistinctive said about alterations. Not only that but coworkers are likely to be less understanding because they figure that the government has their back with benefits and the company gets handouts for hiring them. Used to be employers would feel a bit bad for them and hire them at a reduced wage(which sucked) for a job they thought they could do, after they proved themselves they made as much or more as coworkers depending on the job they did. Now with all the alleged protections, there's too much liability, risk and mandatory accommodations. This is in addition to coworkers believing they have a special deal and are not held to the standards of everyone else. I knew a great mechanic that was missing an arm from just below the elbow, he worked for the same local garage for 20 odd years because they knew he was a good mechanic. That garage closed when the owner died but no place else would hire him for a long time (ended up being a vacancy at another small locally owned garage that knew him and his work personally).

August 02 2010 at 11:56 PM Report abuse rate up rate down Reply
Robert R. Taylor

This is taylorrjb. I have been disabled for a very long time. I have delt with the americans with disibilities act also. the employer that I was with when my injury that disabled me permantly happened used the part of the act.that says without an acommandation against me. It also says with an acommandation. But they ignore that part and the federal government does nothing to the employers who do this. This company even got away with not even paying any of my bills. this is what this act is really about.

August 02 2010 at 11:16 PM Report abuse rate up rate down Reply
Robert R. Taylor

People who have a disability, come to think that the Americans with disability act is a God send. But is not. The part that says with or without a commandation,is the biggiest loophole for the employers ever. They use the part that says without a commandation. they donot reconize the other part that says with an acommadation. I am a very disabled person. when I was working and got injured. The company I was working for completely ignored the act. they went as far as to say that I never worked for them before. if it was not for my log book that we had to keep,there would not have been any way for me to prove that I had worked for them. Even so they still got away with not having to pay anything. to this day I am in a wheelchair most of the time. this is what the americans with disability act is really about,not helping the injured worker.

August 02 2010 at 10:53 PM Report abuse rate up rate down Reply
Annie

And the fear that Adam knew will increase once our medical records are online and open to the federal goverment; potential employers and even doctors wanting to make sure that they match their diagnois to one previously given.

No longer will we have the option that Adam had to keep our "disability" private. No longer will it be a matter between our doctors, their staff and us. It will big government gleaming information (supposedly cleansed of ID's but still tied to a source).

And not only will we have no privacy to choose to expose or keep our "disabilities" private but we will lose control of how we are treated medically since the government will be setting protocols for exams, treatments, etc for each condition based on an average and costs not based on the needs of the individual patient as decided by them and their doctor.

Congratulations to Adam for finding a way to grow to a remarkable man capable of handling his own life and for wanting to live a life with out being marked as disabled before someone got to know him.

And I am glad that he finally can get the medication to make his life easier.

August 02 2010 at 9:47 PM Report abuse +1 rate up rate down Reply
ckkphd1

I have, for a very long time, worked in the field of disablity. I fully understand what Adam has done in order to not be perceived as different. Our society as a whole finds it very difficult to accept differences and deal with diversity. It is a sad commentary when one realizes that all of us are affected in one way or another by disability yet find it nearly impossible to accept that being disabled is okay. I would be so happy if we could just take the small step of using people first language as a universal approach to accept difference. The paraplegic would then be the person with paraplegia, the autistic would become the child with autism and on it would go so that foremost we consider the person first and the disability or difference second.

August 02 2010 at 9:46 PM Report abuse rate up rate down Reply
JOHN

There are many ailments that are not obvious to the public. Unless they are having a seisure, an epileptic looks just like anyone else. I have amblyopia, better known as lazy eye. It effects my depth perception, but that can be compensated for. I drove commercial trucks since the early 60's, without any problems. Now my age is being used as a "disability" to deny my right to continue in that work, even though I am in good condition, and take no regular medications. The problem is you can't legislate attitude.

August 02 2010 at 9:29 PM Report abuse +7 rate up rate down Reply
ladydistinctive

Having had disabled persons working for me, I can truthfully say that the extent to which the disability act can be enforced is really a hardship for small businesses. After fulfilling nearly every request, i.e. widening doors, changing bathrooms, adding ramps, special chairs, additional desks suited to the disability, changing hours worked, and having to allow for extra time off - all eventually under the threat of being "turned in" to the Fed. Govt., was more than we could afford. Each of the disabled employees, after a very short time on the job, quit and went on disability, one totally unfairly blaming the company for exacerbating the problem which was present for years by their own admission to us prior to trying to sue us,caused us to quit hiring any persons with disablilities.
The amount of money the government forces businesses to spend for one person with no demands at all upon that person for committment is a hardship we could not afford. I really fear that the stringent laws will cause others to do the same, thus defeating the purpose for the Disability act.

August 02 2010 at 9:25 PM Report abuse +2 rate up rate down Reply

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