Whether it’s because of societal expectations, privacy concerns, or a lifelong curiosity about what being disabled even means, four people at various stages of identifying with disability pride were willing to speak about their experiences. These are their stories.
Pride for Patients and Providers
Rhoda Olkin, PhD, distinguished professor in the clinical PsyD program at Alliant International University, says that oftentimes, concepts like disability pride can be difficult to broach with clients. “When I talk about things like disability pride, no matter what language I use, often clients will say back to me, ‘That means I’m giving up, that means I’m not fighting it anymore, that means that I have to just accept it.’ And I try to really make a very difficult distinction between acceptance of what is, and giving up, resignation.” Olkin says her lived experience—she was diagnosed with polio when she was only a year old—saw her be “segmented into parts” by others. “Polio predominantly affected my back and my leg. And if I could have just taken off my leg and sent it to the doctor, they would have been very happy. The fact that it was attached to, say, a seven year old girl, was just inconvenient for everybody. And so it started this process of thinking about the integration of the disability into the entire person,” she says. After graduate work at the University of California-Santa Barbara, Olkin has gone on to create books and tools to best support disabled patients and practitioners. She says her understandings of community were heavily influenced by Black students in her overwhelmingly white school, even as the medical system sought to devalue her.
Hidden in Plain Sight
There is a heavy emphasis, especially in disability-focused social media spaces, on being out and proud. For some, the pressure to come out as disabled means they choose not to disclose that information. For one person, who has asked to remain anonymous, it’s partially the expectation of disclosure that keeps them from identifying more openly.“I do applaud the people who share openly for the sake of disability pride and awareness, but I also applaud the people who choose to be silent about it. Because there is a lot of courage that comes from being quiet in a society that makes it seem like they are owed all of your truths, at all times, in every condition,” they say. They say that they didn’t come to understand themselves as disabled until college, but are keen to point out that not wanting to be loud about their disability doesn’t automatically mean they are ashamed. For them, identifying with disability meant coming to understand labels differently. “When I realized I was disabled in college, that’s when I made sure that I did what I could to receive everything I was deserving of. People just have a problem with labels, whether it’s gender, race, or religion, but what we have to realize is that with labels, it’s not always to box you in—it’s to give language to what you need and to help you receive what would actually make you live as peacefully as possible.”Similarly, for Olkin, disability pride doesn’t mean loving being disabled all of the time. For her, disability pride isn’t an on or off switch.“For myself, I think it’s really important that people understand that disability pride doesn’t mean I don’t also hate many things about disability; I hate that I’m in pain. I hate that I had to give up woodworking, which I loved, because my hands got weaker. I can hate things about the disability and still have disability pride,” she says.
Disability Pride and Erasure
For some in the wider disability network, discomfort with disability pride also comes from movements similar to it and their tendency to erase those who are multi-marginalized. That’s the case for McMaster University doctoral candidate Jess Rauchberg. “Who gets to be represented in mainstream disability pride? What good is disability pride for some when other disabled folks experience the violence of medical racism, transphobia, classism, homophobia, xenophobia, and ethnocentrism? This isn’t to say that disability pride is bad or that it’s not important. “Instead, I think ‘palatable’ representations (e.g., disability representations that don’t make non-disableds uncomfortable) are very surface level if we are not committed to the economic, political, and cultural survival of all disabled people.” Rauchberg says that her entrance into the community largely took place in online spaces like Tumblr, Twitter, Instagram, and TikTok. Her view is that the disability pride content that comes to the front of these sites tends to be dominated by privileged disabled people and not those who are most often harmed by an ableist society. “I think I am frustrated by the idea of shallow representations of overwhelmingly white, disabled, cis, straight, middle-class people and how that is treated as the goal when it’s a small part of greater liberation and dismantling of ableism, racism, and colonialism. It sometimes feels like disability pride is more concerned with a rights-based approach than disability justice and liberation,” she says. Olkin says recent internal data at her university points to very few disabled students identifying as disabled when they get to the placement stage. She says there are a myriad of reasons why students don’t identify, many of them having to do with the way the profession is constructed.“Students of color kind of say to themselves, ‘Oh, my God, I need another stigmatized status like a hole in the head.’ So students of color are particularly reluctant to identify as students with disabilities, as well as students with certain medical conditions like diabetes, for example. “Insulin-dependent diabetics have never been raised with the idea that this might fall under that category. And so it’s very new to them. And then our students take a diversity class, where out of an entire year of 45 hours, three hours are spent on disability. So they’re not learning a lot about disability.”
Disability Pride is a Lifelong Affair
For some, the journey to pride in their disability included a jumpstart from their parents. Joannie Cowie says that her mother, now 89, is still pushing her to fight for disability rights. “She’ll still say to me, ‘When I die, you keep fighting for disability rights.’ And then I’m like, ‘I’m trying, Mom, I’m doing my best.’” Cowie says that it’s that lengthy experience with disability pride, from being hidden away in an elementary school basement to attempting to wheel across Canada, that pushes her to fight for the next generation. She sees disability pride as a way to combat a Canadian government that she believes is actively harming disabled people. “I think it’s made me stronger as a fighter. I don’t see things changing for me with government, but it pushed me harder to push for kids with disabilities. If I can’t make the change for me in my lifetime, I hope to god that I am working hard enough to change it for my 21-year-old daughter and all the kids with disabilities in this country.” For others, the process of identifying with disability during the month is murky. It’s important to keep in mind that there is no “right” way to identify with disability, and each person has their own unique view.
