Disability: Why Is Our Existence as Humans Still Being Denied?

{ Shop all Gender Neutral Bathroom Signs }

Disability: Is Our Existence as Humans Still Being Denied?

Emily Rapp Black

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.

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 activists, although news coverage at the time was far from celebratory. The protest was 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?” The 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.