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