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.
