Longmore Institute Director's NY Times Op-ed: The Price of 'Disability Denial'

By: Catherine Kudlick

The following piece is cross-posted from the New York Times Op-Eds; see the original post here.

It was 1989 and I was immersed in my first teaching job, a one-year gig at Barnard College, with the possibility of something long-term. During that time, I had become friendly with a senior colleague named Bill. On our many walks along Broadway to grab deli sandwiches, we’d talked about our grad school days at Berkeley, the high rent of tiny apartments in New York and how to get the Barnard women to share our passion for European history in the small classes they’d asked me to teach.

One morning outside his office something felt off. Bill, who would be part of the team deciding whether to hire me, seemed nervous. Then he came out with it: “I’m wondering if you’d be able to guest lecture in my 100-person western civ class.” As I took this in, he added, “It’s part of, um, your interview for getting a permanent job here.”

I always knew my day at the podium would come. In fact, on one of our walks I’d asked Bill for advice about teaching larger classes. I told him about the details of my lifelong vision impairment and of my terror of public speaking, and asked about how I’d deal with calling on students when I couldn’t see them. In smaller classes, I learned quickly where people sat, and the give-and-take of conversation told me who was engaged. But applying this to more than 30 people seemed overwhelming.

I have nystagmus, a condition in which involuntary, jumpy movement of my eye muscles makes it difficult to focus, a chore that constantly challenges my brain as it frantically tries to keep up. As a child, my thick bifocal glasses and lack of confidence made me the brunt of cruel names and pranks, like being surrounded by kids who threw things on the ground and forced me to look for them. Later there were awkward, sometimes hostile encounters with potential landlords, dates and employers who I tried to brush off as a few gross kids who never grew up.

It had been a huge step to “come out” to Bill about the lifelong vision impairment that I thought I could hide. Starting in a new place with my doctorate safely in hand seemed like the perfect time to try on a new identity, one where I could be more upfront with others — and with myself — about what I could and could not see.

I remember the door frame with its chipped paint, Bill’s messy desk, the scuffed linoleum, the fluorescent lights that made us both ghastly as we stood on the threshold. I imagine an old clock ticking in the background. A soft, cracking voice — mine but not mine — finally broke the silence: “Is this something all job candidates have to do?”

“Um, well uh, no. It’s just that there’s, uh, concerns we don’t have about other candidates, about how you’d handle a large class, you know, because of your … well, you know.”

Of course I knew. At the same time, I didn’t want to know.

I paused, sensing that whatever I said next could destroy my chances for this job, and even future ones.

“I won’t do something that nobody else is required to do,” I said at last with a quiet force that surprised me. It was my first awareness of a visceral complicity between my body’s memory and my soul’s need to cry out — a feeling that one day I’d call conviction.

“I’m disappointed,” Bill said, “but of course it’s up to you.”

All at once, my nystagmus was on a rampage, not just in my eyes but throughout my body, from the hair on the back of my neck to my toes digging into the front of my shoes. I’m frozen. I’m tangled. I’m powerful from the force of it, oblivious and achingly hyper-aware. I want to vomit. I want to lash out. I want to run screaming.

Bracing against the door frame, I wondered how much of this was apparent to Bill. I said nothing, even as words formed: This is betrayal. This is wrong. This is discrimination.

It’s a painful revelation. The mind and the body fuse into one ugly knot of humiliation, anger, fear, doubt. You’re at this crossroads: You can suck it up and carry on as before. Or you can fight back.

All this happened the year before the Americans With Disabilities Act was passed. One of the little-recognized side effects of disability denial is that it inhibits the firing of the synapses that enables people to think of themselves as having rights. In other words, I was still many years away from believing that laws like the A.D.A., or any precursors that were in effect, applied to me.

But Bill and I — like most people around us and too many Barnards then and now — had been brainwashed in the same well-meaning society that still fails disabled people. We sat through tear-jerking movies where helpless blind girls groped and stumbled. Our heartstrings were pulled by fund-raisers showing blindness at its worst to raise money for cures that could be many years away. Images like these isolate people with disabilities not just from society but also from one another.

Though I am not fully blind, my vision impairment, and the challenges it presents, has made me particularly attuned to how others perceive blind people. Our words equate blindness with being out of control and clueless — phrases like “love is blind,” “blind rage,” “blind to the possibilities,” to “blindly carry on.” Such ideas slip quietly into our souls. They find their way onto playgrounds and into news stories, and before long they’re floating inside and outside of doctor’s offices, in sports competitions, film studios, policy debates. And in job interviews.

For the decade after Barnard it would be three steps forward, two steps back: a therapist who helped me ask if I’d rather imagine myself as an incompetent sighted person or a competent blind one; finding an exciting research topic in the history of blind people; discovering I’m a real ham when it comes to lecturing — the bigger the crowd the better.

But at my core I remained haunted and hurting. I couldn’t find a healing way to tell the Barnard story: Either every little detail poured out in a frightening rant or I clammed up, wondering if I really wasn’t qualified after all. Even as I researched and learned more about blind people’s history, I did everything I could to avoid being seen as “one of them.” Using a magnifier in public mortified me as much as the white cane I shoved into the back of my closet.

Then one day I met Bryan, a dynamic blind guy on the other coast who was several steps ahead of me on the journey. Each intense phone conversation upended years of denial and self-loathing. A wall I’d unknowingly constructed between me and the world began to crumble as I found strength and beauty in places I’d assumed to be off-limits.

He introduced me to the National Federation of the Blind’s Kernel Books, matter-of-fact stories told by blind people explaining how they did things nobody thought they could do: babysit, barbecue, teach. Each concluded that blindness isn’t the real problem; society’s responses to it is. Reading the first few, I began to sob uncontrollably. I had spent my life avoiding blind people, and in these pages I met scores of them living life with dignity. Now I was open to anything or anyone who would actively challenge my self-imposed limitations by encouraging me to embark on exciting adventures.

If Bill were still alive, I’d strut up to him with my white cane and proudly lead him to “Patient No More: People With Disabilities Securing Civil Rights,” the disability history exhibition I spearheaded. I would take him to the yearly Superfest International Disability Film Festival that my organization co-hosts with Lighthouse for the Blind and Visually Impaired in San Francisco to experience real camaraderie among disabled people and our allies. At both he’d discover captions and audio descriptions that he’d appreciate as someone entering old age.

Future Bills and Cathys need more fresh ideas like these about disabled people. Once freed from prejudice and shame, they can teach the largest class of all — society — to imagine people with disabilities as innovators, problem-solvers and true agents for change.