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[accessible activism] for Our Lives | If this is what democracy looks like where are the ramps? | Savvy Cooperative | #AskPatients

The March for Our Lives brought people together across the globe. People of all ages, colors, and parties took to the streets to demand safety for our children.

I look at the dramatic pictures of people marching, holding signs above their heads, while my Twitter feed of patients and people with disabilities fills up with the reality I know.

People with disabilities are not always included.

Last week I wrote about the Inherent Privilege of Advocacy, calling attention to the challenges many patients and people with disabilities face to participate in in-person advocacy opportunities, like conferences and meetings.

This, too, is the case in our current paradigm of activism. But marches are not the only way people can show their support for these important issues.

My husband is an activist [now law student] and over the years, I have participated in demonstrations and marches. While I understand there must be a call to action to get people engaged, our current state of activism seems to suggest that if you’re not in the streets, you don’t care enough. As a person with disabilities, I knew this wasn’t true.

I also knew the activists around me didn’t mean to imply this rhetoric to people with disabilities, yet by not creating accessible ways to participate, it takes the choice away.

People with disabilities care just as much (and at times, more) about the topics at hand, we just aren’t creating spaces to include them. I have personally felt I had to explain why I am not out on the streets, an uncomfortable position for anyone with a disability.

I’m not saying don’t march. Please do. Please, practice your First Amendment right to express your beliefs and defend your civil rights, especially for those not present.

I’m saying remember those with disabilities or conditions that keep them from the streets. Because not only do we not talk about disability rights enough, but we leave them out of other conversations.

When people take to the streets for Black Lives Matter protests, the Women’s March, and now March for Our Lives, accessibility is often an afterthought.

Disability is the forgotten demographic.

 
Picture of Kerry Wong in a scooter at Womens March
Picture of Kerry Wong in a scooter at the Women’s March, being interviewed

Last year I attended the Women’s March in NYC with Last year I attended the Women’s March in NYC with Kerry Wong, one of Savvy’s first Co-op Members. Kerry was sporting her glammed up scooter as we navigated crowds, barricades, and sidewalks. She was the subject of intrigue and drew the attention of reporters covering the march, as if playing a game of “which of these things doesn’t belong.”

Kerry should be interviewed, not because she is the shiny object in the crowd, but because she is an advocacy rockstar and has just as much to say about the topic as anyone else. She described her experiences this weekend at the March for Our Lives:

Someone came over to me to say how glad he was that I could be there — that his wife has mobility issues, so she couldn’t join him. A few other people approached to ask about my scooter, either for themselves or for a loved one with mobility problems. But no one approached to talk to me. No one asked if I lived in the neighborhood or had kids at one of the local schools. No one talked to me about how great the turnout was or how awful the situation that brought us all out there. In their eyes, I wasn’t a person marching to protest gun violence, just like they were. I wasn’t a person at all. I was a mobility issue.

We’re just so used to not seeing people with disabilities, but just because you don’t see them regularly doesn’t mean they don’t care just as much.

While many took to the streets on Saturday, another Savvy Co-op Member, Erin Gilmer, took to Twitter to share her voice and remind of this important issue.

@GilmerHealthLaw: 

"Many of us with disabilities and chronic illness cannot show up to marches, but that does not mean our voices don't matter. We're here. We're speaking. We're lifting the voices of others. Words make change wherever we are."

"Marches aren't generally accessible for many with disabilities. Whether it's mobility issues, being able to carry medical supplies, food, water, whether it's the anxiety of being in the public. That's true in public on a normal day, even more so with big crowds." 

"Yes, some disabled individuals are able to go and that's amazing! But health is also different for us every day. Some days we can got out, other days we do the best we can to get out of bed. But we do show up, we show up wherever we can with whatever tools we have."

"I hope those who see twitter as "slacktivism" will one day understand the amazing tool it is to raise more voices, ones that might have been assumed silent before. Before, our voices couldn't be heard unless we were physically present, which meant many w disability weren't heard.

"I hope no one with disabilities feels guilty about not being able to attend a march. I see you and hear your voices. They are strong and important. Keep speaking. Keep tweeting and sharing and lifting each other up."

 
Erin Gilmer Accessibility Twitter Thread


This perspective matters. Greatly.

To learn more about disability rights and activism, check out Disability Rights Education and Defense Fund (DREDF), Disability Visibility Project, Rooted in Rights, ADAPT, and follow the hashtag #CripTheVote.

Call to action

If you have other resources you turn to, follow or contribute to on how people can get more involved with these (and future) issues — from home or in accessible ways — please tag us on Twitter/Instagram @savvy_coop, and we will help amplify them. Your voice matters.


Savvy Cooperative is a co-op, co-owned by diverse patients, people with disability and other helpful citizens. Savvy gives people a platform to share their experiences living with health conditions or navigating the health system so that together we can accelerate change.

Jen Horonjeff
Post by Jen Horonjeff
March 26, 2018
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.