Thursday, July 30, 2015

A salute to ADA, Tom Harkin and Jack Hillyard

“Many of those things that I worked on for all those years were inspired by my brother.” Tom Harkin, former United States Senator from Iowa

JULY 26 marked the 25th anniversary of the passage of the Americans with Disabilities Act. Iowans can take pride in this milestone; we elected Senator Tom Harkin who was one of the main authors of the bill.

I confess to you that for longer than should have been the case, I didn't fully appreciate the impact of ADA. The person who helped me wise up is Jack Hillyard who, during the time that he was our office-building neighbor and friend, served as executive director of the Center for Disabilities and Development for University of Iowa Health Care.

His former title — he's since moved on to do important related work for the state of Pennsylvania and elsewhere around the country — isn't terribly informative as to what his work and accomplishments were; he successfully negotiated back and forth between the Iowa legislature and the Iowa Department of Human Services to secure passage of Iowa's Medicaid buy-in program which resulted in Medicaid coverage for over 17,000 employed persons with disabilities.

One day he said to me, "People walk around thinking that 'other people' are disabled. What they don't realize is that they're just not disabled — yet. They will be, though." 

Jack Hillyard

What he meant was this: break your leg and boom, you're in a cast and disabled. Not permanently, if you're lucky, but you're disabled for awhile, and so on for the limitless list of things that can happen in a nanosecond that have the power to leave any of us struggling with mobility, including old age afflictions that spare virtually no one. 

So what happened? I fell off a loading dock in a dark warehouse, severely sprained my ankle and had to have Paul push me around in a wheel chair at the grocery store and in airports.

I've never forgotten the lessons I learned from Jack.

Below, find a first-person story from The New York Times about what the bill meant to one man and his family; below that is a salute to now-retired Senator Tom Harkin lifted from the Omaha World-Herald.

Former Senator Tom Harkin

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.

Tom Harkin's brother fueled his ADA determination
By Andrew J. Nelson
July 21, 2013

Many people look to their older siblings for inspiration. U.S. Sen. Tom Harkin is no exception.

Harkin's older brother, Frank, was deaf. His struggles were behind many of the younger brother's efforts to help the disabled, including the landmark 1990 Americans With Disabilities Act. Tom Harkin was one of the main authors as well as the chief Senate sponsor of the legislation.

“He was a great guy and a great brother,” Tom Harkin said in a 2000 interview after Frank Harkin died at age 78. “Many of those things that I worked on for all those years were inspired by my brother.”

The act was signed into law on July 26, 1990, by President George H.W. Bush. The legislation altered the American landscape by requiring that buildings and transportation be wheelchair-accessible and that workplace accommodations be provided for those with disabilities. It also prohibited businesses and governments from discriminating against the disabled in job applications and required closed captioning for television.

In 1999, the U.S. Supreme Court found that unnecessary institutionalization of the disabled violated the act. But a study released last week, commissioned by the Senate Health, Education, Labor and Pensions Committee that Harkin chairs, found that institutionalization remains a problem.

Harkin said that moving working-aged disabled out of nursing homes and similar facilities would not only be more humane but also be less expensive.

“The isolation of working-aged persons with disabilities in institutions is a shameful holdover,” he said. “Integration into the community is the right thing to do. It is a smarter use of our Medicaid dollars.”

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