An Act That Enabled Acceptance, by Ben Mattlin

An Act That Enabled Acceptance, by Ben Mattlin

Postby admin » Thu Aug 20, 2015 10:02 pm

An Act That Enabled Acceptance
by Ben Mattlin
July 25, 2015


VISIT me and you’ll see, prominently displayed in my living room, my wedding portrait. My wife looks radiant in a lacy white cloud, standing beside tuxedo’d me in my motorized wheelchair. I’m not propped on a sofa or lounger; my wheelchair is deliberately not cropped out of the photo. It’s literally part of the picture, as it’s always been for us.

We were married almost exactly one year before passage of the Americans With Disabilities Act, the 25th anniversary of which will be celebrated July 26. I’m a lifelong wheelchair user because of a genetic condition called spinal muscular atrophy; my wife is what’s now called “neurotypical,” a fancy term for nondisabled. But on our wedding day, my disability — and my concomitant lack of basic civil-rights protections — was far from our minds.

Of course, the A.D.A. had nothing to do with marriage equality. What it did do, the government noted, was mandate equal access in employment, public accommodations and government programs for anyone who “has a physical or mental impairment that substantially limits one or more major life activities” or“a history or record of such an impairment” or “is perceived by others as having such an impairment.” This meant public spaces like stores, theaters and restaurants had to install ramps or electric lifts; many doorways had to be widened; elevators revamped with Braille buttons; and public restrooms altered. Employers, too, had to make “reasonable accommodations” for disabled workers, such as allowing flex time or providing telephone headsets or appropriate computer software.

Before the A.D.A., only public schools and other institutions that received federal funding faced similar requirements. A few states — notably, California — had already established some accessibility standards, but nothing as broad-based as the A.D.A.

Back then, I was only marginally aware that I could be — or even had been — discriminated against. I tended to minimize my disability and its impact on others. My wife and I were probably more concerned about the fact that I was a New York urbanite and she a suburban Californian. We met on summer break from college, talking endlessly during long warm-evening strolls, trying to keep pace with each other though we moved by different means. Our many differences, I think now, were part of the attraction. To me, her West Coast free-spiritedness was exotic; to her, my determination must have seemed like a force of nature. Also, she told me later, seeing the no-nonsense way my family assisted me at home helped demystify my limitations and needs. The novelty of our relationship felt like an asset, not a liability.

Certainly, the longevity of our union also owes a great debt to honest communication and creative problem solving. The wedding photo is a good example. We put it up only after we grew tired of deliverymen and repairmen and housecleaners asking if she was my sister, or my nurse. Some have even called her a saint for staying with me. It makes us want to scream: “No! The disability didn’t come as a tragic surprise. It was there from day one, a strand in the very fabric of our lives together.”

The picture also comes in handy if my wife isn’t home and some clueless visitor addresses my attendant instead of me, discounting my presence. I’ll try to draw attention to the photo, as a way of saying, “Hey, I live here, and I have a life beyond these wheels.”

When I was in grade school, my parents fought to get me “mainstreamed” into regular classrooms rather than segregated in special education. (Full inclusion, as it’s now known, didn’t become law until I was in eighth grade.) When I started college, at Harvard, it was the first year accessibility was required at universities and similar institutions, per the Rehabilitation Act of 1973 (which took years to be fully implemented). One dean, I painfully recall, quashed my request for roommates instead of the isolation of a separate dorm room. He said he feared how my disability might affect them. Forget about how this sequestration affected me.

More shocking still is how easily I accepted his judgment. Accommodating the disabled did seem like an impossible imposition then. Indeed, when the A.D.A. passed, one of the biggest fears was what it would cost businesses, even though the law plainly states that accommodations can’t cause “undue hardship” for other patrons or employees or the employer’s bottom line. (The Department of Labor found that modifications for workers with disabilities averaged only $500 each.) Moreover, businesses that make accessibility modifications can receive tax benefits — a deduction of up to $15,000 a year for removing barriers, as well as a tax credit of up to $5,000 annually for small businesses.

People with disabilities also represent a huge potential market. The United StatesCensus counts nearly one in five Americans as disabled, and we spend $17.3 billion a year on travel alone, according to the Open Doors Organization, a Chicago-based nonprofit.

LOOKING back, perhaps the most unexpected achievement of the A.D.A. isn’t the wheelchair lifts on buses or the sign-language interpreters at political conventions. It’s that it gave people like me a sense of entitlement, of belonging, of pride.

The A.D.A. is about more than ramps and Braille; it’s about dispelling stereotypes, ensuring parity and fairness, creating opportunities and opening up our society to the full spectrum of types and needs. It’s about accepting, even welcoming, a huge and often marginalized segment of the population.

Our two teenage daughters, both able-bodied, have grown up in a different world. Recently, one came home from her high school’s Diversity Day incensed by a presentation about disabilities. “It was all about being kind to people who face difficulties, which is fine,” she said, “but there was nothing about respect or empowerment or equality!”

Maybe I’ll bring my wedding portrait to the next Diversity Day. Whether we knew it or not at the time, our brand of mixed marriage sends a powerful message.

Ben Mattlin is the author of “Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.”
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