Thursday, January 26, 2017

Front and Center

On January 21, I joined over 200, 000 people for the Women's March in New York City. I have cerebral palsy, which makes it tiring and painful for me to walk long distances or stand for long periods of time. Winter is particularly difficult as the cold causes my muscles to contract and muscle spasticity is one of the most common problems with palsy. The cold makes walking even  difficult, if not impossible. I have a tendency to lose my balance or trip over the slightest thing. My body has the muscle memory of falling in the way that others might have the muscle memory of say, riding a bicycle or swimming. Once, a man who saw me fall was completely impressed and told me "you fall like a football player." Still, I am at risk each time I leave the house.

On the March, I had my sturdy husband and best friend there to provide constant assistance. When we came out of the subway, it was already in full force. The route spanned six crosstown blocks (each of which equals three blocks) and sixteen uptown blocks. We entered about one-third way into it. Not only was the distance physically straining, but the march wasn't moving fast and there was a lot of standing. We cheated a bit by walking parts on the sidewalk. As we were walking, someone noted how disingenuous it was not to be in the street. We also stopped for lunch, too. Then, we started uptown. I held my husband's arm most of the way and stared at my phone to distract me from pain and boredom. A highlight of the march was when, deeply involved in my phone, I reach out to take my husband's arm when I heard him cry out, "Wrong arm!" I had moved to take the arm of a stranger with the same color coat.

By the time we finished the final ten blocks, I had heartburn to the extent that I thought I was having a heart attack. My left foot was completely cramped. My legs were burning. My pain made me anxious, so I was disoriented and lightheaded. We realized that the subway closest was closed. I was silently at my wits end.

The presence of people with disabilities at the march was nearly non-existent. There was a Disability Caucus, but I wasn't able to reach them because they were at the back of the march, eight long blocks away. I did not have the stamina to walk that far and back. During the march, I saw a total of five other people who had visible disabilities. Of all the signs, only three people included the rights of disabled people. One woman, a bit of a hero, had a sign printed out calling for the rights of all minority groups and at the end she had added "women w/ disabilities" in handwriting. It was clearly an afterthought, but charming that she took the time to fix her error.

As I marched, I began to wonder, are events like this inherently ableist? The march was an event that is too long for most disabled people or people with disabled children to participate, too crowded and noisy for people with mental disabilities, and simply too daunting in other ways; There were no bathrooms, no marshals, no medical care, and no resting stops. Not to mention being in a group of thousands of people chanting slogans with signs for the rights of every minority single person, except me.

As I marched, I felt ashamed that I could not go the full distance. I felt proud that I stuck it out and marched at all. And it occurred to me that especially because the march was ten times more difficult for me than those around me, I deserved to have my rights honored. I should be used to being excluded from civil rights movements. But, I'm not. ­Yet, I went anyway. I went because I feel that boycotting events doesn't actually do anything. If I don't show up, people are not going to get upset because no one with cerebral palsy came. That is what they are used to, and frankly, many people would rather disabled people stay at home. By being present, I am proving my very existence and yet, why should that should proving my existence be so hard?

I spoke with organizers, Mia Ives-Rublee and Ted Jackson, from the Disability Caucus for the Women's March in Washington. From an outsider's view, the D.C. march seemed equally exclusive. None of the major speakers mentioned the rights of disabled people. Michael Moore did not. Nor did Ashley Judd. Madonna excluded them. And Gloria Steinem, to my knowledge, has only mentioned disabled people once in her 40-plus career involving the accessibility of Uber cabs.

Ives-Rublee and Jackson did make tremendous headway. They had a disability section in front of the stage, ASL interpreters, live streaming that was captioned and 30% accessible port-a-potties. And the disability rights activist Tammy Duckworth was included as a speaker. The cost? Zero.

Both Ives-Rublee and Jackson said that it was a learning curve. Sometimes, they had to advocate for themselves. Two deterrence were only having two months to organize and many more people showed up than was planned. However, the March's organizer, Jenn Ingram, was willing to work with them. This willingness on the part of abled activists is crucial and rare. Ives-Rublee believes that it is because activists still don't view disabled people as a minority that deserves the rights of all the other minorities. Other people argue that they just "forgot" to think of us or that we are too expensive, it's too much work, or they "can't help everyone."

I think the time for excuses and/or willful exclusion has passed; under the Trump administration, there is too much at stake. And, as well-intentioned as it is, I need more than Meryl Streep speaking out for the "weakest" of us. I, the so-called weakest, walked fifteen blocks in a body with impairments. I don't see any weakness in that.

No comments: