Reflections on Route 66 and Disability

I will pass from this world soon enough…

As a guide dog traveler I could die on any street though my dog offers some hope we’ll make it across. But like many disabled I live with the intricate and dark understanding I could disappear at any moment. Abled people have this also, specifically when they think about random gun violence in supermarkets or schools, but us disabled have this always. It’s not just a blindness thing. Wheelchair users know all too well the perils of street crossings. Autistics know about the horrors of police interactions. And the medical industrial complex, our rich and muscular father, he despises us.

These and other thoughts were on my mind yesterday as I contemplated turning 66. Route 66.

Disability is a matter of knowing all about mortality and precariousness. It’s many other things of course. But like Carl Jung’s metaphor of the house under the house this is the Etruscan sub-basement.

I remember how my late friend, the disability activist and scholar Bill Peace was attending a conference at Yale University. The event was about bio-ethics. Bill was a wheelchair user and he had a sudden cardiac emergency. He was taken to Yale Hospital where, believe it or not, he was shunted to a corner of the emergency room and left alone for 7 hours.

Bill died two years ago in another instance of medical neglect.

Route 66…


As late as 1985—yes, believe it—just five years before ADA, I was told by a graduate professor that if I was blind I shouldn’t be in his class. This was at the University of Iowa. That’s pre-ADA in a nutshell. I went to the department chair—he called me a whiner; I went to the Dean, he looked at his watch; I went to the university’s “ombudsmen” (quite a feat since his office was incredibly well hidden) and he also looked at his watch; I talked to the moribund and ineffectual disability support office—they said, the best we can do is give you a note that says you can have more time for exams. The demeaning, bigoted, ableist hostility was untouchable.

I left without my Ph.D. I already had a graduate degree in poetry writing. I packed up. Pre-ADA there was no recourse. If they told you to get lost, well, you didn’t have ammo to fight with.

Those who say the ADA has’t done enough for the disabled are not wrong. And there are still professors everywhere like the late Dr. Sherman Paul who treated me with unspeakable disdain. But post-ADA you can fight back. Post-ADA there are consequences provided you’re willing to snarl and push. There’s still a boatload of ableism around. It may even be fashionable with some. But ableism is long past its sell date and it smells funny—by which I mean you can’t hide it anymore.

I know the ADA hasn’t created lots of jobs and I know it hasn’t changed every mind. Even now the Chamber of Commerce still fights disability rights. Recently with the Chamber’s help Domino’s Pizza tried to say the blind don’t have the right to use their websites—they lost in court—but you see how it goes.

Where am I going with this?

Every street in town is potentially lethal. Every emergency room can kill the cripples. Education is still hard to obtain for the disabled. One in four disabled students graduates from college.

Route 66 indeed.

Author: skuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

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