Millions, possibly billions, of people were devastated on election night in 2016.
I was one of them. I feared for my life.
I graduated Magna Cum Laude in 2009 with a bachelor’s degree, but I now try to survive on under $1,000 per month on Social Security Disability (SSDI) because of a disease I was born with. As a result of this incurable disease’s progression, I am fully disabled and impoverished. I am a living, breathing, pre-existing condition.
After the election sunk in, I desperately sought hope. I clung to the gleam of The Women’s March, craving for throngs of women to somehow save me from this new hell. I had dreams of attending the 2017 march in D.C. but wasn’t sure how I’d survive it. My inflammatory disease, Ankylosing Spondylitis, causes debilitating pain and fatigue if I exert too much energy or stand longer than a few minutes. I would have to rely on my cane, pain medications, and a slim chance of places to sit and rest during a march where I wouldn’t know many people. In the end I settled for attending my local march in Sacramento, CA.
I borrowed a huge, clunky wheelchair from my church and asked friends to push me in it. I noticed people’s kindness – those who made room when I asked for it – and I called it accessibility, when in reality the march’s overarching inaccessibility made it such that I had to rely on the kindness of strangers in order to participate (I remain grateful for the kindness). I had to do what many with disabilities must do in order to survive: ask for help; rely on others; and say, ‘Thank you,’ for not being trampled.
If I could make it to the front, I was told, there was an area for people with disabilities, but I learned of it a hundred yards away – and about two thousand ambulatory people swarmed in a pink pussy-hatted mass between it and me. So, I settled for less and pretended it was sort of OK that my primary view was of people’s butts and shoulder bags.
I spent almost the entire rally staring at signs looming above my head, occasionally standing up to catch a glimpse of the stage. I relied on others to choose the direction I rolled and the final place my wheels rested. And I felt like a burden, like luggage being push through a crowd of unpredictable feet and heels stopping and sidestepping in front of my toes. I was, in a word, helpless, as much as I was delighted to be there instead of isolated at home in my bed.
The event was designed only for people who could walk and stand for hours.
When systems are built in a way that restrict our freedom of movement, or independence within our bodies, we become less-than-human, forced to rely on others to help us do basic things. This is when the system disables – or handicaps – us. It is this inclusion/exclusion divide that gives power only to temporarily nondisabled bodies.
Nancy Eisland writes, “People with disabilities have been encouraged to see our needs as unique and extraordinary, rather than as society-wide issues of inclusion and exclusion.” (From The Disabled God)
It doesn’t have to be this way.
During the 2017 march, I didn’t catch the systemic ableism because I didn’t know what it looked like. I was just grateful to show up; grateful for the clunky wheelchair so that I could participate at all. I was still learning how to be disabled and failed to recognize that I was excluded from full participation not by the crowd, but by the failure of event organizers to institute a structure and culture of universal design or accessibility.
I was naïve and, looking back, it showed. (Case in point, here’s my blog post after that march)
After that first march I realized I wanted my own wheelchair so I could navigate without having to ask for help. I researched, crowdfunded, found a lightweight manual wheelchair that was my size, and ordered it through eBay. My wheelchair’s first “coming out” was, appropriately, the 2017 Sacramento Pride parade. During the parade, as I rolled with my church contingent, a young teenager sprinted out from the sidelines to hug me. The Sacramento Bee captured the snapshot and put it in an online photo album (image 9). I felt seen, but naked at the same time. Inspiration porn found me.
Note, the image shared below is a separate image in which I feel empowered.
In 2018, I attended a listening session two weeks before the Sacramento Women’s March. I shared that I hadn’t seen any accessibility information (note: the listening session was held in an inaccessible room).
I was invited to speak at the march. They also asked me to do a ‘walk-through’ of the rally site a week before the event, to make it accessible. I said I wasn’t qualified, and I was angry they expected to make the march accessible a week before the event, but I shared what advice I could because I wanted disabled people to feel as welcome as possible.
I wasn’t paid.
Much of what I suggested was shot down, partly because it was only a week before the event and accessibility was, as always, an afterthought with no time to implement. But I was also told by the nondisabled organizers why some of the suggestions I shared, which I got from this accessibility checklist from RootedinRights.org, would make the march less safe, less accessible, and why their original plans were actually better.
On the day of the event, shortly before I went on stage to speak, I was asked to include a Thank You to the organizers for doing what they could last minute to make it as accessible as possible. I felt pressured to do so and obliged, but it was extremely uncomfortable. A year later I realized I had been able-splained in both instances: I had been told how to be appropriately disabled – and subordinate – for nondisabled people’s comfort. So I tweeted about it.
This year, 2019, marks the beginning of Trump’s third year in office, and it’s the Women’s March’s third attempt at getting fourth wave feminism right – and by right, I mean Left. And by Left, I mean powered by the intersectional and marginalized identities that have been silenced during the first three waves.
On January 8th, eleven days before the 2019 march, I was called by a new organizer of the Sacramento March (someone I’ve worked with in the past) and was asked to review materials and offer accessibility advice for the event. I was told accessibility was important and a big deal, but learned that no one with a disability had been involved in planning from the start. I reminded the organizer that accessibility impacts every single level and layer of planning an event from start to finish, and that I’m not the qualified expert disability consultant she needed. I also wasn’t willing to work for free, but I still ended up spending an hour on the phone bringing up often-overlooked access issues. To be transparent, I also offloaded a lot of frustration and anger at the oversight by the previous organizers, which the new organizer took with grace.
This year I’m tired. No, I’m witheringly exhausted. For the past two years I’ve been fighting for my life in the face of multiple threats to the healthcare that keeps me alive, including cuts to Medicaid and Medicare (both of which I rely on); threatened cuts to Social Security; attacks on the Americans with Disabilities Act (ADA); removals of protections for disabled students; and a war raged against poor people.
Managing my incurable chronic disease alone is a full-time job, much less fighting for continued access to the vital services that keep me housed and fed. The stress of trying to care for my body in the face of these threats has worsened my physical and mental health and has me on guard. I live in constant fear and uncertainty.
I feel the rage my disabled siblings have felt for millennia. We are one of the most economically and socially disadvantaged groups in the world, one of the least represented in any level of political office, and the successes we have made are constantly under attack.
Instead of saying Thank You this year, I’m saying Hear Us!
Accessibility does not look like a seating area and ASL interpreters. Universal design/accessibility (it’s unclear which is more appropriate in this context) is a complete overhaul of the current cultural and physical infrastructure so that disabled bodies and minds are embraced fully as whole bodies and minds worthy of equity, access, space, voice, seat, and vote. And we who are asked to accomplish that hard work of systemic overhaul refuse to do it for free – disability access affects every single aspect of planning and structure.
My biggest suggestion on the phone with the Sacramento organizer – and this is important for all public events and marches of any size – was to build into their budget the hiring of a disability consultant to make sure planning is accessible from start to finish. I urged that this be seen as vital as their budget for vendors for sound, stage, permitting, and security.
If the Women’s March, or any public march or rally, truly wants to make accessibility a priority, it should make universal design/accessibility a chosen and intentional platform. And it won’t be free, for as expansive as disability is (it reaches all of us), it needs to be an automatic part built into the very nature and cornerstone of every event. I won’t stand for anything less. Pun intended.
*Note: the 2019 organizer of the Sacramento Women’s March stepped in last minute to assume responsibility of organizing the event after the former organizer was no longer in charge, at the beginning of January (less than a month before the march). She is not responsible for planning that lacked accessibility before her lead role began.
I was interviewed for these two articles in advance of the 2019 Sacramento Women’s March:
Sacramento News & Review: Resistance and Controversy
Capitol Weekly: Sacramento Women’s March to go on as scheduled
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