Joco Opinion

Finn Bullers: ADA anniversary a cause for celebration, but there’s work left to do

The weather: Perfect. The playlist: Stellar. The music: Loud.

Break it down, and the landmark Americans with Disabilities Act we celebrated Sunday means a 51-year-old father with muscular dystrophy can take his 15-year-old son to see his first-ever Rolling Stones concert on an idyllic Saturday night at Arrowhead Stadium.

And in a world where fathers yearn for simple touchstones with easily distracted teenagers, the ageless Rolling Stones closed the generation gap for one night and made it cool to be Dad.

We sat in two $35 nose-bleed seats closer to God than center stage. It was a simple elevator ride up in my Permobil C-300 power wheelchair. Low-cut security rails refused to block the view of the ginormous ZIP Code Tour video screens. Wide concourses and seating areas made maneuverability a sweet ride to the stadium’s accessible restrooms.

The ADA made that happen — breaking down structural barriers to allow me and my son to share Mick Jagger’s storytelling and peacock-strutting theatricality.

Most significantly, the ADA took the spotlight off the grueling demands of disability for one night and let the high octane rock ’n’ roll gig unfold organically in a wide teenage grin and a shoulder-bumping guy hug.

On July 26, 1990, on the South Lawn of the White House, President George H.W. Bush signed “the world’s first comprehensive declaration of equality for people with disabilities.”

Today, the ADA is one of America’s most comprehensive pieces of civil rights legislation, prohibiting discrimination and granting people with disabilities the same opportunities as everyone else to participate in mainstream America.

Power tools like the ADA have cut curbs, built ramps, widened doorways and more in our built environment for 58 million — one in five — Americans, as well as dramatically improving how people with disabilities view their own self worth.

Before the ADA, I spent my first two decades fighting to ignore my muscles weakened by muscular dystrophy, assuming that disability was my cross to bear — alone. Too bad. So sad. Just deal with it. And the quicker I came to grips with my self-loathing reality, I reasoned, the sooner I could adjust to life as a “happy crip.”

For a time, I bought in to the medical model of disability so prevalent pre-ADA: rehabilitation, charity and paternalism. Even people with disabilities didn’t think the issues we faced in our daily lives were the product of prejudice and discrimination.

Before our civil rights movement, the responsibility for the consequences of disability rested only on the shoulders of the person with a disability, rather than being understood as a societal responsibility. The ADA dramatically changed that perception and says people with disabilities are:

▪ Responsible to want to live at home where our care is significantly less expensive.

▪  Fair to think we have something to contribute in the job market — and pay taxes.

▪ Legally within our rights to expect “reasonable accommodation” to shatter barriers to major life experiences — the simple beauty and power of the landmark legislation.

Equally significant, argues James Weisman with the United Spinal Association, the ADA has changed the way people behave in the face of discrimination.

Prior to the ADA, discrimination was passive, Weisman says. No one acted. Today, the ADA makes the failure to act — that is, to make reasonable accommodation — discriminatory and unlawful.

But there is much work left to do and at least three major obstacles:

Enforcement: There are only two ways to enforce the ADA, writes author Josie Byzek in New Mobility magazine at http://www.newmobility.com/2015/07/ada-a-peoples-history. “Regular people with disabilities have to either file complaints with the DOJ (Department of Justice) or sue their local businesses. That’s like Norm suing Cheers! Especially if you live in a small town,” Byzek writes. “Truly, everyone will know your name.”

Employment: Securing a job still remains elusive, with today’s 70 percent disability unemployment rate higher than at any point in history. Prior to 2009, when I left my full-time reporting job, I could write my own ticket. After 2009, using a scooter and later a breathing machine, I couldn’t get a job editing “Dog Catcher Weekly.” And if you do get a job, you can’t keep it because of head-spinning regulations that forces poverty as your new reality just to keep your federal benefits.

Quality care: We need the federal right to receive top-notch, in-home care. We have a right to a high-priced nursing-home bed. Why not cut our costs, while at the same time creating a reasonable legal right to in-home personal care? I’ve been cheated, lied to, physically abandoned and the target of theft by unscrupulous caregivers hired by the state who have no moral compass or marketable work skills.

Today’s ADA is steady scaffolding from which to build tomorrow’s edifices of access. But the true heavy lifting lies in the strength of a super-charged national fleet of disability civil rights’ advocates toiling in the advocacy trenches at high noon.

Stay strong, fellow advocates, stay strong.

Finn Bullers, a former reporter for The Star, is a policy adviser for the Greater Kansas City Spinal Cord Injury Association.

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