A few weeks ago, we posted a survey asking people to talk about what disability activism and identity mean to them, and how they came to be involved. Here are some selected quotes from answers we received on disability identity. Join us for our next #CripTheVote chat on
Disability Identity and Activism, Monday, February 6, at 7:00 PM EST.
Defining activism and/or advocacy
"I identify as advocate. I don't have much reason other than activism feels more like butting heads...and advocacy feels more like conversation, bringing people along..."
-- Liz Jackson @elizejackson
"I am an activist/advocate because I can't keep my mouth shut. I want to draw people in toward understanding. My definition of activism is broad. Any act that disrupts the status quo is activism. Being disabled in public is an act of resistance. Being genuine and unapologetic is an act of resistance. Speaking truth on social media, in conversations, not accepting being an object of inspiration porn... staying alive and as well as possible is an act of defiance and resistance."
-- Linden Gue @DagbokDog
"I define activism as getting involved , educating people on disability issues and policy's especially ones that many people don't understand."
-- Lauren Norman @jrtgirl35
"What I define as activism is standing up for what you believe in and shouting at the top of your lungs against things you know is wrong. You must take a stand for your community, get mean if you must but I try not to. I believe that all persons with disabilities should unite together, not just stay in our own groups, to confront the problems we face today.”
-- Anonymous
"Activism, for me, is putting myself on the line as the image of who is being harmed. It's owning being harmed and pushing back against it. It's standing in solidarity with intersecting oppressions and insisting that either we get there together or none of us get there at all. A free, just society is one in which everyone has their needs met without suffering or undue burden. To be an activist is to work for that society, no matter the cost."
-- Aleksei Mirov @ai_valentin
"I am an Autistic self-advocate and activist. Advocacy I would define as more "working for ___" and activism as being advocacy with maybe being louder or more out there. Activism is to make people aware. Advocacy is for fighting or working towards something. It's hard to separate them into two different things..."
-- Ev
"Activism is using yourself to lift up other people's voices, advocacy is using your own voice to speak for others."
-- Tim Abbott @mhdtim
"To me, activism/advocacy is not always pointing things out the discriminatory things in culture, because that can be tiring and one can't be expected to do that all the time. So, I think it is also learning how to accept oneself in a culture (past, current, and hopefully not future) that teaches ableism is an acceptable thing and GOOD thing."
-- Anonymous
"For me, advocacy is fighting for my own rights and needs. Activism is fighting for the whole disability community's rights and needs."
-- Andrew Pulrang @AndrewPulrang
"I don't call myself an activist or advocate. I just put my thoughts around disability on twitter and they seem to resonate with people. I don't know what being an activist entails so I'm loath to call myself one. If other people see my thoughts, opinions and activity as activism so be it."
-- Anonymous
"I define activism as any deliberate action, no matter how small, toward a more just existence for all people."
-- Flynn Germain @flynngermain
"Activism to me is challenging power, privilege, and oppression in all of its forms.”
-- Lisette @LisetteETorres3
"Activism is freedom. I can no longer quietly conform to a system that subordinates me."
-- Anonymous @georgesdryad
"i think there is a mainstream description of activist that i feel like i don't ID with, and i don't know how much of that is internalized ableism and how much of it is just not necessarily identifying with that. i think intellectually i want to argue that activism and advocacy aren't necessarily the mainstream definition i'm thinking of, particularly for spoonies who aren't always able to be present in the same way people traditionally view activists as. but i 'm struggling to internalize that on an emotional level."
-- kate @kavoogs
Motivation for being an activist or advocate
"I'm an activist because I have to be. I go to a disability-hostile school. I live in a disability-hostile world. I learned to fight early from my Latinx immigrant father, and I've never met a challenge I couldn't take on. I can't use my fists, so now I use my words. 14 years of higher ed and being multilingual gives me a rhetorical ferocity and fearlessness that overcomes my anxiety."
-- Aleksei Mirov @ai_valentin
"I want to do what I can to help people like me who may not have the same resources."
-- Anonymous
"I am definitely an activist (though I also advocate for myself.) I am an activist because there is a vat load of fuckery and oppression going on in this country (and world) and I know we can do better, so I fight for that."
-- Michele @rebelwheelsnyc
"I am an activist/advocate because I can't keep my mouth shut. I want to draw people in toward understanding."
-- Linden Gue @DagbokDog
"I'm an activist and advocate. I admin forums for PWD and help promote Lyme literacy. I'm an activist because I ACT - by opposing measures and behaviors intended to hide us or keep us quiet or refuse the help we need. I'm an advocate because I teach and provide support myself and through forums."
- Besame @BesameChispa
"I have to use my voice. I've learned that my voice has power as a self advocate, and advocating for issues I care about is the next step. I typically see activists as people who are "out there" doing things, and not just using their voice through speech or writing - advocacy. I have been called an activist, and it initially made me uncomfortable - I typically see myself as more of an advocate... Willing to use my voice, but not likely to be out on the street demanding change. What I've realized is, I am becoming an activist. Wanting to take legislative action is something I see activists doing, and that's the direction I'm heading."
-- Christine M @ChrisDisability
"There was a time that I only focused on the rights of Autistic people, but after joining a group called YO! Disabled and Proud I got to meet other people with different disabilities. I realized we all face the same problems. I decided that rather than being an activist for just the Autistic Community, I decided to be an activist for the Disabled Community as a whole. I have made a lot of non-Autistic friends with different disabilities."
-- Anonymous
"I feel a responsibility to others who are suffering to leverage the resources, privileges and experiential knowledge I have gained to try to lessen their burden and empower future generations of disabled people, as was done for me. I've benefited tremendously by brave 'activists' whose activism took many different forms."
-- Amanda H
"When I became disabled I had to advocate for myself in order to do things I wanted to do (participate in athletics, dance, etc). I found that the best way to accomplish that was to effect systems change, which not only enabled me to do those things, but the people who come behind me as well."
-- Sam de Leve @ChaiKovsky
"I took up being an activist during my last few years in college. I noticed more and more as my classmates fervently fought for the rights of everyone, I got left behind. While my university championed having gender neutral bathrooms I still didn't have an accessible bathroom in the building on campus where I worked: and no one cared. I was excluded from discussions about minority, being told that I wasn't a real minority and that I didn't experience 'true' discrimination. And worse, when I recanted these situations to friends they agreed! I realized no one but me was going to stand up and say it was wrong and that I mattered too."
-- Kit @mathnskating
Examples of activism from your life
"I am a journalist by trade and activism came to me as a natural response to the UK government's attacks on disabled people's rights. Amplifying people's stories became a useful use of my skills."
-- Tim Abbott @mhdtim
"traumatic brain injury is known as the silent epidemic and i work everyday to bring awareness. Activism and advocacy is writing letters, emails, twitter, phone calls, lunches once a month at my house for other survivors, and using my connections to the media and others to create opportunities for others...to bring about awareness"
-- Anonymous
"I am interested in politics and policy anyway, and as a disabled person I feel these issues personally. I also feel I have insights into disability issues that not everyone can give."
-- Andrew Pulrang @AndrewPulrang
"I mostly engage in activism online through blogging/social media, fundraising/donating to causes I believe in, and sending emails to my reps. I like to think that even if all I accomplish is increasing visibility of disabilities due to mental health and chronic illness, that I've done at least something."
-- Anonymous
"I consider myself to be a scholar-activist. I fight for intersectional social justice, focusing mainly on the intersections of race, gender, and, now, disability. I am currently forming a national coalition for Latinxs with disabilities with colleagues from across the country."
-- Lisette @LisetteETorres3
"Additionally, for those people who have the need to create fiction, creating characters with marginalized identities can be a very beneficial thing, not just for oneself, but for others if you feel you are able to put your works out there safely. Representation is always a good thing. Our communities can always use more complex disabled protagonists. :3"
-- Anonymous
"I've been to protests, I've made calls and sent letters, I've turned up at city hall, but I've never done that *primarily* as a disabled person. I advocate strongly online, though. I also try to educate in person when things come up. Since I speak up about my disability and advocate for myself in school and volunteer positions, I suppose I'm raising the profile of people with invisible disabilities."
-- Megan Lynch @may_gun
"Activism and advocacy aren't limited to the conventional activities that come to mind (e.g., canvassing, lobbying representatives about legislation, signing petitions). The advocacy that was most instrumental in empowering me came from personal, informal blog posts I located online - powerfully candid accounts from a woman detailing her personal experiences with an embarrassing condition that I was suffering from, too. Her bravery inspired hundreds of others who were feeling ashamed and embarrassed to come forward and share their experiences and crowd-source their knowledge for the collective benefit of the group."
-- Amanda H