I had a strong bond with my uncle Leopold — my mother’s brother. He lived with us for most of my childhood and teenage years.
Leopold was bright, witty, fun, and energetic. He brought a lot of joy to my life. I often think of him as my third parent. In many ways, he was my rock.
In the late 80s, my uncle was diagnosed with full-blown AIDS. Not much was known then about this syndrome. First my family learned of the diagnosis — then one opportunistic infection after another hit him, each one taking a huge toll. In a matter of months, my uncle went from being a fit, athletic, strong young man who bicycled around Manhattan, New York, to one who needed a cane, then a walker, then a wheelchair — the downward spiral occurred over a short six month span.
I went to stay with Leopold in his Westside apartment for a week shortly after the arrival of the wheelchair. Following is my attempt to explain how my eyes were opened to the discrimination experienced by those with disabilities and how others — including myself at that time — are oblivious to it.
The weather was beautiful on the first morning of my visit. His 16th floor apartment was tiny, even by New York City standards, but it had two large windows giving him an amazing almost panoramic unobstructed view of Manhattan facing east.
The view that first morning was nothing short of spectacular. Sunlight filled the room putting us in good spirits in spite of the situation. Leopold suggested we go out. He wanted to do a little shopping and we were entertaining the idea of having lunch at his favorite deli on Broadway and 80th. This was going to be a good day. Mom and I got him into his wheelchair. We left the apartment, got into the elevator, exited, and wheeled him through the sunlit lobby.
I frequently visited New York. I especially loved being there with my uncle. It didn’t matter that his apartment was small. I’d sleep on the couch or on the floor. But now his apartment was filled with medical paraphernalia, a constant reminder of what was to come. On this day, we were going to get away from it all and just have a fun day in the city.
We had walked less than a block when it started to dawn on me that we might be approaching a problem. As we reached the corner of 59th and 10th, my fear was confirmed — there wasn’t a ramp at the curb! I didn’t know how my mom and I were going to get my uncle across the street.
One of the conditions he had was neuropathy which caused him considerable pain. Just rolling over the uneven pavement caused him extreme discomfort. How were we going to get him across the street and back up onto the curb without bumping and jostling the wheelchair and causing severe pain?
I also wondered if we were even strong enough to get him and the wheelchair up on the curb once we made it to the other side. Could we get someone to help us? I looked at all four corners. There were no ramps at any of them. If we weren’t strong enough and someone helped us at the first corner, would we be lucky enough to find helpers all along the way? Remember, this is New York City and this was just the first of many corners we were going to encounter. As I stood there on the corner of 59th & 10th on that beautiful day with my uncle in his new wheelchair – the prospect of having a “fun day” began to fade.
In a flash, I thought about the hundreds of stairs going down into the subway — and what about buses and taxis – were they wheelchair accessible? Would we be able to get him around town without knowing what obstacles we’d encounter along the way? We needed to be prepared for these things in advance!! I couldn’t even get my head around the bathroom issue!?
I was born and raised in New York and visited frequently after moving to Los Angeles but for the first time it occurred to me how infrequently I saw people in wheelchairs among the thousands of pedestrians in Manhattan. I began to get a sinking feeling.
In that nano-moment, I experienced a shift in my understanding. It became clear to me the complex issues and the many layers of complicity that work together to create an unequal society and the pivotal role invisibility plays in creating and maintaining a system that produces disparate outcomes.
It became all too clear how it is that an entire segment of the population can be discriminated against, in plain view, without anyone — except those who are directly impacted – noticing. I certainly was blind to it. Why was it that I had never noticed the lack of people in wheelchairs milling around New York City?
In that moment I could see how policy makers, city planners, government contractors, builders, architects, the transportation department and thousands of others made decisions that were, in effect, sentencing wheelchair bound people to housebound existences. And it was perfectly reasonable to believe that none of these decision makers had bad intentions. They just lacked first hand knowledge — the kind of knowledge that can only come with experience.
That day with my uncle didn’t turn out to be the fun day we were hoping for. We never got past the corner. We had to go back to the apartment and think about strategies. As the week passed, we learned how difficult it was to get around the city in a wheelchair. It was such an ordeal that he only left when he had to go to the doctor which was only a block away.
Sadly, with the exception of doctor’s visits, my uncle remained apartment-bound until he was admitted to the hospital where he remained until he died four months after he became wheelchair bound. His death, of course, had nothing to do with curb ramps, but the quality of the last few months of his life did.
Being apartment-bound only added to his sense of powerlessness, hopelessness, and despair. Ultimately, he became clinically depressed; he even attempted suicide but I caught him just as he was climbing out of his window on the 16th floor and pulled him back into the apartment.
In 2002, more than 10 years after my uncle passed away, New York City agreed to install concrete ramps at the city’s 158,000 curb corners. This was done, in part, to satisfy a settlement agreed upon to avoid a lawsuit against the city by a group representing thousands of New Yorkers in wheelchairs. Also, since that time, steps were taken to provide wheelchair-accessible taxis and subway stations throughout the city. The buses were made wheelchair accessible earlier but they still lacked curb ramps which meant the freedom to travel for people who used wheelchairs was still limited.
As a black woman, I am all too familiar with the larger society’s inability to “see” racial discrimination even when I think it’s staring them right in the face. But experiences like this has helped me to understand that for many, this blindness is very real.
The discriminatory results that were the consequence of thousands of decisions made over time by thousands of decision makers were not intentional. It’s likely the vast majority didn’t and won’t ever know that they had a hand in keeping someone housebound. This particular someone — my uncle — was a lifelong taxpayer and participated in the representative form of government we enjoy in the United States.
We hire or elect representatives to speak on behalf of “the public” — to make decisions that are in the interest of the public good. It’s unlikely the architect of New York City’s sidewalks and curbs intended to design a system that limited the freedom of a percentage of “the public” — the ones who use wheelchairs. But their freedom was limited nevertheless.
For this reason, Congress established a department of government to protect the civil rights of all individuals and prohibit discrimination on the basis of race, color, sex, disability, religion, and national origin. The Civil Rights Division of the Department of Justice was created to enforce laws that protect civil rights and prohibit discrimination regardless of the perpetrator’s intention.
During the Bush Administration, many civil rights attorneys left the department. Whether it was because of their departures or for other reasons, the Civil Rights Division did not act on many issues brought to its attention during that administration. However, during the Obama administration the Senate confirmed Thomas Perez as Assistant Attorney General of the Civil Rights Division. Perez was nominated by Attorney General Eric Holder in an effort to reshape the division.
In an interview with Patt Morrison of KPCC Tom Perez said, “There are two ways to prove discrimination. You can show that someone intentionally discriminated or alternatively you can demonstrate that a person or a company had a practice or policy in place that while facially neutral had a discriminatory impact.” Perez, who began working for the department in 1989, plans to restore and transform the division so that it can more effectively protect the rights it was founded to protect.
The Civil Rights Division of the DOJ has been around since 1957 to enforce anti-discrimination laws in housing, employment, voting, lending, and other areas to ensure we all have equal access to the freedoms offered by this country. But, for the first time in America’s history, we have a President and a First Lady who have both experienced discrimination.
I don’t know if you have to experience discrimination first hand in order to be able to see it, but I do know that I learned a lot standing on that corner with my uncle in a wheelchair 20 years ago. For that reason, I have hope that maybe the Civil Rights Division under the Obama administration will do what it has often failed to do in the past – provide a line of defense for this country’s most vulnerable people.