[nfb-talk] Fwd: Why is our existence as human beings still being denied?

Jack Heim john at johnheim.com
Tue Aug 1 13:16:06 UTC 2017


-------- Forwarded Message --------
Subject: 	Why is our existence as human beings still being denied?
Date: 	Thu, 27 Jul 2017 02:44:49 -0500

In Denver in 1978, just after the July 4 holiday, 19 men and women with 
disabilities positioned themselves in front of public buses at the busy 
intersection of Colfax Avenue and Broadway. They chanted “We will ride!” 
until city transportation officials were willing to hear their 
complaints: Namely, that lack of access to public transportation led to 
disenfranchisement and discrimination, which led to joblessness, 
homelessness, despair and misery.

These pioneers, known now as the “Gang of 19 
were not simply irritating commuters by blocking the intersection all 
day and into the night — they were demanding to be heard, and, perhaps 
most important, to be /seen/. They are praised now as important 
although news coverage at the time was far from celebratory. The protest 
was an early sign of progress to come, including the passage of the 
Americans With Disabilities Act in 1990, which established the 
fundamental rights of access and equal opportunity that had so long been 
denied this marginalized group of human beings.

Yet in late June, nearly 40 years after the Gang of 19 protests, I 
experienced a troubling moment of déjà vu as I watched disability rights 
activists being hauled out of their wheelchairs 
outside the Denver offices of Senator Cory Gardner. The sit-in was a 
protest against the Republican Party’s proposed drastic cuts in 
Medicaid, cuts that would certainly push millions of people with 
disabilities out of sight and into the neglect and despair of 
institutions, home confinement, joblessness and poverty. I was saddened, 
bewildered and angered that a movement that gave so many so much more 
life could have come so far, only to be forced to protest the same 
issues all over again — basically, our right, as people with 
nonnormative bodies, to basic access, to our very existence.

In 1978 my parents watched live footage of the Gang of 19 protests on 
their television (my father remembers getting up to turn up the sound) 
in the weeks before my amputation, the first of six operations I would 
have in the next five years, from ages 4 to 9. I was born with a 
congenital birth defect that required amputation so that I might be 
fitted with a prosthetic limb; this was considered, in my case, the best 
shot I had at a “normal” life — which my parents viewed as an ability to 
work, make an impact, have mobility, be considered equal to others, even 
if my body was built differently. They desperately wanted this for me, 
and were willing to change jobs and move across the country to make it 
happen. It was a propitious move, as I would later become an early 
student in the adaptive ski program in the Rocky Mountains, an 
experience that, more than any other in my childhood, changed my life.

My parents had moved us close to Denver to be near Children’s Hospital, 
and their widely respected orthopedic surgeons on staff — one in 
particular, who performed every one of my many surgeries, including two 
of the “do-overs” when the operation didn’t yield the desired results. 
We were not rich by any standards — a lower-middle-class family with 
good health insurance — which, even so, never covered all of my 
operations or devices or in full. Both my parents worked two jobs on and 
off throughout my childhood to close the gap. My father even drove a 
school bus, a fact I vividly remember made me feel ashamed.

My parents must have sensed what a person — in this case, their daughter 
— would face, given her nonnormative body. It must have been a mix of 
hope and fear, of anger and elation.

Now, as a parent myself, I can imagine the mixed emotions my parents, 
decades younger then than I am now, must have felt watching the standoff 
between the wheelchair users asserting their rights and demanding 
respect and dignity, and the official forces brought in that showed how 
thoroughly that respect was, in fact, denied.

I’ve always known that discrimination against those with nonnormative 
bodies runs deep. My great-aunt once announced that I was “made wrong” 
to a room full of people when I was in my late 30s. On another occasion, 
while I was talking about what the A.D.A., passed just that year, meant 
to me, a relative said, “When we knew people who couldn’t walk, they 
just stayed home.” My grandmother once protested being asked to help pay 
for an elevator at her church: “My legs work,” she said. “Why should I 
pay for those whose don’t?”

Very few people would express these sentiments publicly, or at a 
cocktail party, or even at the Thanksgiving dinner table as my 
grandmother did, but the attitudes behind them still exist. At times, it 
seems that discrimination against people with disabilities is the final 
frontier of human rights.

Although people with disabilities are able to ride buses in most cities, 
the attitudinal barriers still exist, and the logistical ones are often 
linked to these. In the late 1990s, I used to take the No. 66 bus from 
Roxbury to Cambridge, from my apartment in Mission Hill to classes at 
Harvard, an hourlong journey plagued by traffic delays on the best of 
days, but especially in the frozen tundra of a Boston winter. I took 
that bus nearly every day for two years, and nine times out of 10 when 
someone in a wheelchair wanted to board, the lifts were broken or 
malfunctioning, and it might take the frustrated driver 30 minutes or 
more to fix the issue, often calling in support staff, while people 
glared out the window at the person in a wheelchair who waited, 
shivering on the icy sidewalk. So many times I heard people say, and not 
under their breath, “damn cripples” or some variation.

It pains me that I never spoke up, never said a word to the mutterers, 
that I exercised my privilege as a non-wheelchair user to “pass” 
(despite holding a disability card that allowed me to ride the bus for 
only 10 cents a) journey.

Ten years later, after I’d stopped hiding my identity as a person with a 
disability and “joined the struggle,” I was crossing the street with a 
friend using her wheelchair, when two people passed us and said, “What 
is it, like a convention for freaks?” They looked right at us as they 
spoke — looking through us, it seemed — as if we wouldn’t understand 
what they were saying.//

What is more likely is that they simply didn’t care what we thought, or 
how we felt. It was O.K. to express disdain and disrespect for us, with 
these bodies so long maligned by our culture. It was “just what people 
say.” But what people say matters. It is another form of accessibility, 
another way of being inside, or outside, the narrative of our culture. 
Every time we hear the words “lame” or “cripple” or “freak” it is clear 
we are still living outside the perimeters of that culture.

So many of our country’s social movements have started with the most 
basic kind of access: the right to ride a public bus, the right to have 
our bodies in the world, to be visible and active and /seen. /My first 
prosthetist had his office near that historical corner of Broadway and 
Colfax. It was dirty, dusty and unmarked, and when you slipped in the 
door you were immediately enveloped in cigarette smoke. In some ways, I 
feel like this is where we’ve arrived in terms of our country’s attitude 
toward disability. We can get in the door, but once there, we face a 
whole new battleground, a whole new fog of misunderstanding and disrespect.

Emily Rapp Black, an assistant professor of creative writing at the 
University of California, Riverside, is the author of “Poster Child: A 
Memoir” and “The Still Point of the Turning World.”

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