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. He was quick witted and fun - but most of all, he was loving. He brought a lot of joy to my life.
In the late 80s, my uncle was diagnosed with full-blown AIDS. At that time, we didn't know much about AIDS. First my family learned of the diagnosis -- then one opportunistic infection after another hit him, each one taking a toll.
In a matter of months, my uncle went from being a physically fit, athletic man who cycled around Manhattan, to one who needed a cane, then a walker, then a wheelchair -- this downward spiral was rapid taking less than six months.
I went to stay with Leopold in his Westside apartment for a week shortly after the wheelchair arrived. Following is my attempt to explain how that visit opened my eyes to a form of discrimination most people -- myself included -- don't think about even when it is happening in plain sight.
In the years since I'd moved to California, I loved visiting my uncle in New York. It didn't matter that his apartment was small. I'd sleep on the couch or even on the floor if I had to. But now his apartment was filled with medical paraphernalia. In such a small space, these contraptions were an unavoidable reminder of what was to come. It was beginning to look like a hospital room. This was no longer the fun place I had grown to love.
The weather was particularly beautiful on the first morning of this visit. His 16th floor apartment had two large windows that let in lots of light and gave us a panoramic view of Manhattan looking eastward.
Leopold suggested we go out -- get away from it all for an afternoon. He wanted to get some fresh air 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 and left the apartment exiting through the sunlit lobby.
We had walked less than a block when it began to dawn on me that we might be approaching an obstacle, perhaps an insurmountable one.
As we reached the corner of 59th and 10th, my fear was confirmed -- there was NO ramp at the curb and no driveways anywhere in sight. I didn't know how my mom and I were going to get my uncle off the sidewalk.
One of the conditions he suffered with was neuropathy -- a condition that caused him considerable pain when he moved. He was not a complainer but just rolling over the uneven pavement caused him to wince. I didn't know how we were going to get him across the street and back up onto the curb without bumping and jostling the wheelchair -- thus causing more pain.
Then it occurred to me that we might not be strong enough to get him and the wheelchair up on the curb once we made it to the other side of the street. Could we get someone to help?
I looked at all four corners and down the block as far as my eye could see. There were no ramps at any of them. If we didn't have the strength and someone was kind enough to help us at the first corner, would we be lucky enough to find helpers all along the way? Remember, this was New York City and we were standing at the first of the many corners we'd encounter before getting to our destination and back.
As I stood there at the corner of 59th & 10th on that beautiful day with my uncle in his wheelchair – the prospect of having a “fun day” faded.
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? It was clear that we needed to be prepared for these things in advance. We had to lay out a plan. I couldn't even get my head around the bathroom issue.
I was raised in New York City, brought up in the Bronx and Queens. I also spent a considerable amount of time in Manhattan but for the first time it occurred to me how infrequently I saw people in wheelchairs among the thousands of pedestrians on the sidewalks of New York. I began to get a sinking feeling.
In that nano-moment, I experienced a shift in my understanding. Standing on the corner, unable to move my uncle's wheelchair any further than a few feet from his apartment building, I gained a deep understanding of the loss of freedom and the pivotal role invisibility plays in creating and maintaining systems that make life easier for some but harder for others.
As a Black woman I thought I was aware of the complex issues and the layers of complicity that work together to create systems that disadvantage some and give advantage to others -- but for the first time -- I became conscious of my own privilege. My able-bodied privilege had rendered the struggles of an entire sector of the population invisible to me.
For the first time I could understood how discrimination, in plain view, could go unnoticed by everyone except those directly impacted. In that moment I could understand 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.
These decision makers probably weren't heartless. More than likely, they were just clueless. They lacked first hand knowledge -- the kind of knowledge that can only come with experience. The kind of knowledge I was gaining quickly as I stood on that corner.
That day with my uncle didn’t turn out to be a fun day at all. We never got past the corner. We were forced to return to the apartment. Our afternoon excursion lasting only minutes.
As the week passed, we learned how difficult it would be to get around the city in a wheelchair. It was such an ordeal that my uncle only left his apartment when he had to go to the doctor 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 died due to the ravages of the disease. His death, of course, had nothing to do with curb ramps or other wheelchair obstacles but the quality of the last few months of his life certainly did.
Being apartment-bound only added to his sense of powerlessness, hopelessness, and despair. Ultimately, he became so depressed he attempted suicide. I caught him just as he was attempting to climb out of his 16th floor apartment window.
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 that came about because of a lawsuit brought against the city by a group of New Yorkers in wheelchairs.
Also, since that time, steps were taken to provide wheelchair-accessible taxis, buses and subway stations throughout the city.
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 helped me to understand that sometimes the blindness is real.
In the case of wheelchair accessibility, it's likely the vast majority of decision makers didn't know they were implementing policy or creating designs that resulted in the loss of freedom for someone in a wheelchair. If, at the time, those with disabilities had a hand in shaping policy, New York and other cities may have avoided the expensive re-ramping of their curbs and life for wheelchair users could have been less obstacle ridden.
My uncle -- was a lifelong citizen and taxpayer. He, like the rest of us, elected representatives to speak on his behalf and to make decisions with him in mind. Is that what he got?
I don’t know if you have to experience discrimination first hand to be able to see it, but I do know that I learned a lot standing on that corner with my wheelchair bound uncle 20 years ago. My lack of awareness surprised me -- an uber sensitive to discrimination activist -- but it also deepened my conviction that diversity at every level of government must be achieved if we are to experience true democracy.