July is a symbolic month for the disability community. On July 26, 1990, the transformative Americans with Disabilities Act was enacted, and in celebration of its 25th anniversary, New York City mayor Bill de Blasio declared it Disability Pride Month in 2015. The month-long celebration isn’t nationally-recognized, and while a tedious part of disability rights, it’s important the Biden Administration changes that.
It’s difficult for nondisabled people to understand what disability pride is all about. In my recent personal essay, I talk about grappling with “not wanting to advertise my disability and embracing it as the cornerstone of my identity.” This is what disability pride is. It’s about rejecting the notion that disability takes every ability one has and recognizing that disabled people see the world through their disability, just as nondisabled people have their perspectives shaped by their experiences.
Disability is often presented as something to be ashamed of or a tragedy for people, but disability is a culture, a lifestyle that one falls into. It’s often solely presented on an individual level, but it’s a community, spanning wide geographically but nonetheless closely tied together by a sense of pride. It’s an interwoven pride, where sets of experiences span throughout the community and unite millions from intersectional backgrounds, each unique from the others.
Some nondisabled people even expect that by asking to be treated equally, disabled people want to abandon their diagnoses. They see it as a black-and-white phenomenon. In interpreting it that way, though, they miss the point and the heart of disability pride — that disabilities are both medical conditions and social identities and that diagnoses cannot be abandoned because they become the most integral part of our identities.
The situation reflects society’s obsession with the perfect human being. The perfect being is independent and asks nothing of others, our culture says. Nondisabled people can gloss over their imperfections or undermine them, but disabled people can’t. Whether on the inside or outside, visible or invisible, our disabilities impact us every single day, even if the effect is sometimes a simple internal reminder of their authority. And having a disability means accepting that there are things you cannot do and facing struggles head on. But society says disabled people are supposed to want to get “better” — and that we are not supposed to fully love ourselves, simply because we challenge norms of what the body is supposed to be and often cannot be self-sufficient.
We are not supposed to have pride in our disabilities. We’re expected to be vulnerable and positive about ourselves and our conditions, where we shed nothing but love, and we’re supposed to go along with the myth that society doesn’t exclude us. We’re even supposed to pretend the conditions don’t exist, that we are numb to them, or we’re too naive to recognize their efforts and the effects of ableism. We’re told inadvertently that because we need support from nondisabled people or the government, we’re to be ashamed. We’re to eat crow. Or that we don’t have the right to critique norms. Our lives are supposed to be fairytale-like stories of inspiration and tragedy — all at the same time.
We’re supposed to buy the notion that we are the problems, that it’s up to us to conform to society — not vice versa. Society wants us to believe that everything is already accessible — whether physical or virtual, even though many things, like buildings or websites, aren’t. We’re to be satisfied that the ADA banned discrimination against us and ignore the pervasiveness of ableism in the education system, for example. But regardless and with or without the ADA, the motives have long been consistent: convince people that disability issues are individualized so they don’t challenge the well-oiled machine of ableism.
I have a simple question for those raising their eyebrows: how and why would I deny — or not embrace — the one thing that impacts everything in my life? Why would I not take pride in that? I am who I am because of what I am. In this respect, everybody is impacted by their disability or lack thereof; it’s just that nondisabled people don’t have to think about how.
Originally published at http://www.wheelchairqb.com on July 6, 2021.