[il-talk] NY Times Op-Ed Piece by California Federationist Cathy Kudlich

[Deborah Kent Stein]

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
<https://www.nytimes.com/2017/05/24/opinion/disability-denial.html?smid=fb-s
hare> .

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
<https://nfb.org/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
<http://longmoreinstitute.sfsu.edu/patient-no-more> W
<http://longmoreinstitute.sfsu.edu/patient-no-more> ith Disabilities
Securing Civil Rights <http://longmoreinstitute.sfsu.edu/patient-no-more> ,"
the disability history exhibition I spearheaded. I would take him to the
yearly Superfest International Disability Film Festival
<http://www.superfestfilm.com/>  that my organization co-hosts with
Lighthouse for the Blind and Visually Impaired in San Francisco
<http://lighthouse-sf.org/>  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.



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