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.
Acceptance of disability in relation to identity and pride
"For a long time I thought that my blindness shouldn't define me, but as I got older I realized that it wasn't that it defined me, rather other people defined me by it. It took a long time to understand that my visual impairment colors my entire world: and that's ok. I'm not ashamed of having alternate reading methods anymore, or using my cane, or when people make rude comments."
-- Kit @mathnskating
"I started accepting the label mentally ill w/out shame. My family cringed, especially my mother. It took her just over 5 years to accept that I had an MI. I struggled w/being open at work, settling for sharing w/immediate co-workers. Around the time I partnered with a service dog prospect to train, I began to identify as having a psychiatric/invisible disability. Very open about it publicly when people would ask me as a service dog handler what "was wrong with me." Got some quick walk aways, and some polite smiles, and some genuine questions for education about service dogs for psych disabilities, and some shared stories about MI. Having other future teams in mind as I did so, I eventually identified as an advocate."
-- Linden Gue @DagbokDog
"I was DXed [diagnosed] at 11 and it opened up a new understanding of who I am that I wasn't just a freak or stupid like other well saying I was , I started identifying as autistic when I left the public school system to go to a school for all autistic kids but was told it was wrong for me to say I was autistic because I'm more than my disability and I was also going through a period were I was ashamed to be autistic because I thought different was bad it wasn't until I was 22 and started getting involved with disability advocacy and the online autism community that I started proudly identifying as autistic again."
-- Lauren Norman @jrtgirl35
Internalized ableism & identity
"To be honest, it took me awhile to really connect with my disability identity. Initially, I had a hard time finding other disabled people who I could connect with. There was a LOT of internalized ableism and a lot of single issue solidarity, which turned me off. Like the time I was at a disability center to attend a social support group and many members AND the facilitator (an employee) of the group made these homophobic comments. I spoke up which really isolated myself from the group as a result. That sort of thing."
-- Michele @rebelwheelsnyc
"Accepted my identity as a disabled person after I'd had disability accommodations for a year. I struggled with what it meant to need the extra help when I hadn't needed it my first time through college (I have two bachelors degrees earned 8 years apart), but when I realized that I deserved extra help I no longer felt ashamed of identifying as disabled...I definitely get a lot if negative feedback about my identity, classmates have criticized my use of accommodations or told me it was my own fault I was sick (or they refused to believe that I *was* in pain to begin with), or they would dismiss me with "everybody is tired sometimes" when I mention my chronic fatigue...There is such a stigma about not being 100% self sufficient that it's hard to accept that's how things are now."
"There was a time I hated being disabled, I wanted to hide it. But after meeting others like myself and meeting other people with different disabilities I began to have a sense of belonging. As I gotten more involved, something happened, I started to feel...happy the way I was. I became proud of my disability because it has made me the person I am. I still face some hurdles in employment, now I am getting help with that, but I am happy to be different."
"I'm 28 and was born with my initial disability - cerebral palsy, but it took me a long time to feel comfortable with it. I think like most kids and teens, I felt weird and uncomfortable having a disability. Living in the US, since 1997, changed that a little as I was more included and understood here than where I was born (England). I was a quiet, shy kid growing up and I remember being told by the school physical therapist from day 1 that I needed to be a self advocate. Speaking up for myself seemed terrifying, but she forced me to. It was my IEP goal every year. Eventually I learned how to. I think what really taught me about how to advocate was doing AmeriCorps. It forces you out of your shell, you learn to be a leader, and how to make change as one person. I was much more comfortable advocating after my time in AmeriCorps. I didn't really feel comfortable as a disabled person until I was in my mid 20s. I read a memoir by a woman with CP, and for the first time felt like this was my experience. From there, I became more involved in disability issues, worked for a nonprofit, and got let go due to health issues. The year I spent trying to find myself was when I felt like I needed to use everything that I'd learned to try and advocate more. For now, that means trying to learn, tweet with other disabled people, joining advocacy groups, and writing. I'm hoping to spend time this year at the state capitol doing advocacy work and learning how to make change."
--Christine M @ChrisDisability
Influence of writers and thinkers on politics, disability, and power
"My disability progression coincided with my discovery of feminist blogs, which led me to disability-related blogs. FWD/Forward, Alice Sheppard's defunct Wheelchair Dancer blog, Bill Peace's Bad Cripple, Mia Mingus' Leaving Evidence, and others were all instrumental in guiding me toward a politicized disability identity as I became more disabled."
-- Sam de Leve @ChaiKovsky
"Through my undergraduate studies of feminism, I started to draw parallels to some of the concepts I was learning about gender politics to my identity as someone living with disabilities. Barriers I faced to identity formation included invalidating experiences with healthcare professionals and others, a lack of exposure to social/political theory about disability and gender and lack of exposure to others like me (in media representation and in real life). Furthermore, although I have had disabilities since childhood, one of my most disabling conditions was undiagnosed until just a few years ago, which made me second-guess myself and struggle to fully acknowledge my disability, much less think of it in political terms."
-- Amanda H
Finding language and community
"It took a long time. I was always disabled but the word was never spoken in my house. Then I went to college, read some books, realized lots of writers exploit disability. Finally, went in search of my disabled tribe."
-- Anonymous @georgesdryad
"I discovered I was autistic about 2 years ago. I read other Autistic written activism pieces and started participating in self-advocacy to get myself the supports I need. I faced a bit of internalized ableism and also ableism from my family. I'm still working towards understanding between my family and I, but I have an amazing found family which understands, supports and loves me 100%. They helped me get past a lot of my self doubt and self-consciousness and grow into who I am now, with the help of the online Autistic community. Finding community and people who are with you no matter what is probably the most important thing to me shaping my identity (and my pride in my identity) to where it is today."
Disability identity in relation to multiple, intersectional identities
"I didn't encounter the idea of disability as an identity fully until I joined twitter, and to a lesser extent, facebook. I'm quite isolated so social media, especially twitter, helps me feel connected to the disability community. I guess the biggest barrier I face is myself. While I'm comfortable discussing disability on social media it's quite different in everyday life. I don't know any Black Disabled folk and I live in an area where most disability organizations are white. There was no discussions of identity or activism between Black & PoC folk I met at my local mental health service. I don't even know if they thought of themselves as being disabled. Mental health still isn't seen as disability, probably because society still thinks of disability in terms of physical impairment. MH activism and general disability activism in my country is dominated by white organizations and white people and I don't feel as if I would fit in or my concerns about racism would be addressed or even acknowledged."
"I was born disabled. I embraced it as an identity as a young adult when it became clear to me that society was consciously, lazily, putting barriers in front of disabled people...My identity as an English man was never under threat but every other strand of my identity as a proudly European, migrant, bisexual, disabled person has been minimised or ignored by others. My disabled identity is the single most subjected to frequent assessment by the criteria of others."
-- Tim Abbott @mhdtim
"I had to get over the internalised cultural hegemony about disability, and it was only when I started to use mobility aids that I accepted myself as disabled. As a former dancer, it was only when dance was not possible that I could accept it. Having a lot of marginalisations already -- Latinx, Jewish, queer -- helped me accept this new intersection, and my experience in the wheelchair has helped me accept my gender identity thanks to the strange asexuality ascribed to wheelchair users. Without a gender and sexual performance to put on, and without the ballerina identity to hold on to, I recognised my trans-ness. It all flows together."
-- Aleksei Mirov @ai_valentin
Challenges of having an invisible disability
"I started identifying as disabled when I saw friends of mine identifying that way. The lack of stigma they had around their identities made it easier for me. A big barrier for me was feeling that i wasn't "disabled enough.""
--Flynn Germain, @flynngermain
"It's still a process even after having this disability for 22 years now. I think at first I was hoping to beat back the progress of it. It took a very long time to accept there were things I could no longer do without increasing pain and/or further hurting myself. I didn't hide the disability from employers, friends or family. The biggest surprise was the way my family and some friends accused me of faking or blamed me for acquiring the condition. So just as I most needed moral support, not only was it not there, but I had that additional burden. I had to advocate for myself, there was no one to do it for me...Sometimes I feel caught in the middle, though. There are people with far greater challenges than what I face and sometimes I worry that I'm too disabled for able-bodied folk and not disabled enough for some folks in the disability community (having an invisible disability and more options than a lot of folks)."
-- Megan Lynch @may_gun
"Unlike my racial/ethnic and gender identities that I have identified with since I was young, I discovered my disability identity as I tried to navigate my academic career with a new diagnosis of fibromyalgia, motherhood, and full-time employment; still trying to see what my disability identity means to me; my main barrier is the fact that fibromyalgia is not a visible disability and people think it is not real or that the symptoms are exaggerated; it can make you doubt yourself."
-- Lisette @LisetteETorres3