Disability Pride
July is Disability Pride Month. Like a lot of people with disabilities, I have been trying all month to figure out how I feel about “disability pride” — not so much the emerging, semi-official institution of “Disability Pride Month,” but the general feeling and concept “disability pride” itself.
I have been disabled all my life. I have Arthrogryposis. It is a complex and varied set of conditions that includes: muscle weakness and joint contractures, significant scoliosis — spine curvature, restricted lung capacity, and short stature. I am also lucky to have had very supportive family, good friends, and mostly kind acquaintances throughout my life. I didn’t even experience much bullying in childhood and youth — though measuring such things after the fact is imprecise and relative. I have also enjoyed opportunities not available to others because my family was always comfortable financially, and because my social privilege, apart from being disabled, is fairly high. I am a white American man, of European heritage, from a “good family,” and well-educated. I’ve had advantages that some disabled people have too, but many do not.
Still, my disabilities have always set me apart — in the way others see me, and how I see myself in comparison to others. And until my early twenties, I would have said that “disability pride” was a silly idea, both unnecessary and a bit delusional. Like many people still, including quite a few disabled people, “pride” in disability seemed counterintuitive to me when I was younger. Why would anyone feel proud of having things that are wrong with them? “Disability pride” seemed like a desperate grab at self-esteem, a sign of a much deeper insecurity I didn’t have, or perhaps didn’t want to seem to have.
At best, “disability pride” to me was something superficial. Maybe it was no more or less than just being happy while disabled. Or, maybe it was a kind of agreement with the non-disabled people who think disabled people doing anything well is remarkable and especially praiseworthy. If other people say I’m brave to live as a disabled person, then okay, maybe they’re right. Maybe being disabled is something to be proud of.
It also struck me that “disability pride” might be a kind of propaganda campaign to improve the standing of disabled people. That would be understandable at least, possibly even useful — but not really authentic.
But I got older, had more life experience, and got to know more disabled people and understand the vastness and diversity of the disability community. I also started to realize that despite my surface confidence, I often did feel awkward, embarrassed, even sometimes ashamed about my own disability. Also started to understand that although I was confident in myself in some ways, in others I had real doubts about my place in society, even my value as a human being because of my disabilities.
One good thing about Disability Pride Month is that we get to see what interesting and thoughtful people with disabilities think about disability pride themselves. So while thinking about “disability pride” myself, I reviewed some of what I’ve seen disabled people have been saying about it this month:
- Disability blogger and disabled mother of a disabled child Meriah Nichols says that you can “get by” without disability pride, but trying to hide or wave off your disabilities limits how content and fulfilled you can ever be. “Simply accepting our disability is living with the discomfort of being a square peg that’s rubbing into a round-pegged world. It’s fine. It works. It’s tolerable. But pride in our disability is finding our square edges, understanding what those square edges are to us, and celebrating them.“
- Disabled blogger Grace Dow reminds us that having “disability pride” doesn’t mean we have to like our disabilities all the time, or paper over the difficulties and sometimes suffering that comes with them. “Over the years, I’ve learned to become more comfortable with my disability … Chronic pain and ableism are tough to deal with … [But] although I have a disability, it doesn’t mean my life is a tragedy.”
- In a Chicago Sun-Times editorial, Social Worker Megan Brodie points out that embarrassment and shame at our disabilities isn’t just emotionally distressing, but exhausting and counter-productive in a more practical sense. “I have been thinking a lot lately about how much energy I have expended over the past 30 years hiding myself, while also trying to convince people that I am worthy of equity and inclusion.“
So after living with my disabilities for 55 years so far, what does “disability pride” mean to me today?
Am I proud to be disabled? Not particularly. Being disabled wasn’t something I chose, worked for, and accomplished. But also yes. I am proud that I now feel more comfortable with my disabilities, and at ease as a disabled person, than I did when I was a child, a youth, or a young adult.
Am I proud of enduring hardships? Again, it’s not like I bravely chose to endure the hardships of my disabilities. It never seemed like a choice. But yes, on balance I am proud of how I have coped with the hardships, health problems, and barriers I have encountered. Also I am proud of how my understanding of these difficulties has evolved. I have gradually placed them in better perspective, connecting them with what other disabled people face and struggle with, and seeing how my personal struggles relate to systemic barriers we can all work to remove.
Am I proud of my accomplishments despite my disabilities? No. I am done with the “in spite of” formulation. My disabilities themselves, and the ableism and inaccessibility I have encountered, have often made my accomplishments harder to achieve. But it would be wrong and superficial to suggest that my disabilities have always only been a hindrance. They are part of me, so they have also contributed to my successes, and to whatever satisfaction I have found in my life.
Am I unafraid and unashamed to be fully seen and identified as disabled? Mostly. This is still a work in progress. For one thing, I still don’t feel entirely comfortable with aspects of my own appearance. For example, I almost never wear short sleeve shirts in public because I can’t seem to quit hiding my skinny arms. On the other hand, I have no problem identifying myself as disabled, and associating myself with the full range of the disability community. That is a big change from my youth, when I didn’t want anything to do with other disabled people. And I think I have made some progress from my younger adulthood, when I was comfortable with other “physically disabled” people, but hesitated to identify with people who have sensory, learning, intellectual, or mental disabilities.
There is one important caveat about all this talk of “disability pride” …
“Disability pride” isn’t just a matter of attitude and character, or exposure to disability rights, culture, history, and role models. It is also heavily affected by relative privilege. The potential for any particular disabled person to have “disability pride” is at least partly influenced by overlapping gradations of financial security, amount and quality of family and community acceptance, as well as racial, gender, sexual orientation and religious stereotyping. These all feed into every disabled person’s relative sense of confidence and social status, which can either help counteract specific experiences of disability discrimination and ableism, or make make worse. It’s easier to maintain “disability pride,” or any sort of “positive attitude,” when your life is generally stable and safe, and you have the material resources and social status to keep it that way.
Maybe after all it’s best to leave the definition and meaning of “disability pride” fluid and flexible. It may not be all it tends to be cracked up to be as a slogan, a goal, or a badge of, well, pride. “Disability pride” works much better as a concept to be worked over by each disabled person in their own mind and in light of their own experience. It should always be a work in progress, a thought experiment, not settled state of mind or an identity.
Just about everything disabled people think and say about “disability pride” is part of what “disability pride” actually is. And that’s a good thing.
