Disability isn’t a dirty word
Disability was a word I used to loathe. When my disability was invisible and I still had able-passing privilege, I wished that part of me could be redacted — hidden from sight like a government secret.
After two major spine surgeries and an Ehlers-Danlos syndrome diagnosis, I feel differently. As a mobility aid user, my disability is visible at all times, so it’s almost impossible not to notice it. As a patient that was not believed by my doctor, until I landed in an emergency room with four broken vertebrae and signs of a re-growing spinal tumour, naming disability has been an act of liberation. This label contextualized my experience and reminded me that the barriers I’d been facing were no fault of my own — that I was enough, and the world was falling short.
The disabled community is the world’s largest minority group and the only one that anyone can become a part of at any time. Even so, ableism is rampant in society at a social, institutional and infrastructural level. People often become aware of just how inaccessible our surroundings are only once they become disabled. The onset of my disability showed me that even within the community, disability is not a universal experience. This combines with ableism to shape how we as individuals and as a community define ourselves. Some folks embrace the word ‘disabled’, finding it empowering; others prefer to distance themselves from disability. I chatted with Allan Dobrescu, Dani Saldo, jes sachse and Shay Reid to talk about disability, identity, commonality and absolute differences.
Allan Dobrescu by Cindy Jun
“I am French Canadian, I am an actor. I consider myself to be somebody with cerebral palsy,” says Dobrescu. “I’m fortunate enough that I’m very able in my life,” he adds. You might recognize Dobrescu from his role as Charlie Gerhardt in Fargo, or his modelling work with Toronto-based designer Hayley Elsaesser. “When I [ was ] growing up, it was a bit harder, I didn’t really [ want ] for that to be part of my identity. [I’d say] I hurt myself snowboarding because I didn’t want to talk about it,” he shares. As he grew older, his relationship with his disability changed. “It is part of my identity to have cerebral palsy,“ he explains. Dobrescu often leans towards naming his condition rather than using broader terminology: “if somebody calls me as disabled, I’m fine with that. I wouldn’t want somebody to call me crippled. But disabled is usually what I say. Or I just say I have cerebral palsy.” Dobrescu is often asked about his disability, given its visible nature. “People see it, then they will ask,” he explains. “But I choose — obviously — who I share my life with, who I share my stories with. And it’s not random people at bars.” For him, disability is a very personal thing, and something he doesn’t want people to make assumptions about. “I don’t want [it] to be perceived. [ … ] If I don’t ask [for] anything, just assume I’m fine,” he says.
As an actor, Dobrescu has noticed the lack of representation both on-screen and behind the scenes. “Disability is a bit further behind when people talk about inclusivity — I think we’re getting there, people are starting to kind of talk about it. [ … ] It hasn’t been that long that you see people with disabilities on film or movies or TV shows,” says Dobrescu. He suggests the absence of genuine representation is part of why even well-meaning people ask invasive questions about disability or make assumptions about someone’s capacity, as well as why there isn’t an absolute umbrella label for the community. “People will have a different experience with their disability. I always tried to surround myself with people that obviously are respectful. [ … ] I’ve never been made to feel like I have a disability. So I was very fortunate to grow up in a household and with a lot of friends and support that never really considered me to have a disability,” Dobrescu explains.
Dani Saldo by Matteo Gueli
“I’m a human being who makes wiggly air. I put my feelings into people’s ears. Sometimes I can walk sometimes I cane [ … ] I’m like a charcuterie board for identities,” says Dani Saldo, a Toronto-based singer-songwriter. Though Saldo didn’t always identify as having a disability, that changed with a fibromyalgia diagnosis. The onset of the disorder is often gradual, which drags out the diagnostic process. Its symptoms include widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. “I’ve been trying to have a better relationship with my body and the limits and the strength it has as a result of my disability,” she shares. “It’s become a bigger part of my identity.”
Learning she had fibromyalgia came as a relief of sorts: “knowing that it wasn’t a deficit in me or who I was as a person, rather than it was an illness [ … ] that just like, nuked my experience points and agility points, made such a huge difference in my self-esteem,” Saldo explains. “It was the first time I felt okay about my situation. [ … ] I remember being a teenager and gaslighting myself about it. Having the vocabulary to communicate what was happening to me — like an official name tag almost for my symptoms — made my doctors treat me and take me more seriously,” she adds.
Dani prefers person-first language when it comes to her disability. “Separation between my identity and my limits was very healthy for me. [ … ] Because if I focused on the fact that these are the things I’m not able to do — holy shit, I will be so depressed,” she reveals. Though society often sees people with disabilities through a prejudicial lens Dani’s friends see and respect all facets of who she is. “I fucking hate being othered. [ … ] My friends are cool, [they] see me as a human being, which, thank God, they wouldn’t be my friends if they didn’t.” These prejudicial views don’t always translate to hate and can take the shape of invasive or unnecessary questions or judgement. “[People think] something has to happen to you to become disabled. Like there’s an origin story for disability,” she laments. “Have you ever been in a power scooter and then just like, had to stand up to get something and just had somebody next to you [be shocked]? [ … ] That’s my favourite party trick,” Saldo says jokingly. But the truth is, we are socialized to question people’s disability if they don’t fit known archetypes, as detailed by Norman Kunc’s ‘Critical Disability Theory’ work.
“[I don’t have a] very concise answer as to how I identify, but I feel okay with that because I think it’s so glorious that we get to keep defining who we are,” jes shares. “Disability is so much a part of who I am and always has been.” jes is a multi-disciplinary artist, writer and choreographer, often using large sculptural forms and poetry in tandem. Their ‘American Able’ project with photographer Holly Norris drew the attention of the Canadian media and arts landscape. These images subvert American Apparel ads, which typically featured barely-clothed young hipsters, none of which included people with disabilities at the time. jes has a body that is not commonly depicted in any way other than the pity-centric and superhero tropes thrust upon those with disabilities, so to be pictured in sexy American Apparel-esque images was radical. At the same time, this project and its virality served as a stark reminder of how visibility can be exploitative (and even violent), especially when it comes to disabled bodies. More often, jes was more often invited in as a subject than they were as a collaborator. Eventually, jes’ artistic practice expanded to no longer include photography due to its long history of voyeurism and museological catalogue. Through their work, they address the negotiations of bodies moving through public and private space, and the work of care.
When jes was born in 1985, people with disabilities were largely segregated from mainstream society and often institutionalized in some capacity — whether it was through assisted living facilities or separate classrooms for children. “I grew up in [a time] where [the] aim was to distance yourself as much as you could [from] any and all other disabled people to prove that you’re [not as] disabled,” they share. jes’ relationship to disability changed over time: “I feel gratitude to be alive when I am to reconnect to disabled identity — at a time where the ability to have relationships with other disabled people as friends, lovers, [or] otherwise [is welcomed].”
“Disability [ … ] it’s a particular identity where people sort of trip out around labels. [ … ] There’s just such precious amounts of time to have conversations in like disability-oriented spaces,” they explain. Much of the conversation around disability, identity, and labels has been dominated and co-opted by abled folks. “Whether it’s conscious or unconscious, [ it’s a kind of a ] fetishist, filibuster, like: ‘do you prefer disabled person or person with a disability?’ It’s a way to kind of waste time when it often takes us all so much time to gather in a room in the first place,” they explain. “For me, I say, I appreciate directness, because the reality is, I don’t think disability is real. I think disability is a product of colonization and capitalism,” they add.
“Up until probably a year or two ago, I didn’t particularly like the word disabled,” Shay shares. “But I was talking to a friend of mine and came to realize this is a part of who [I] am, it’s not the entirety of who [I am]. So for me now, [disability] is not as much as a heavy negative word anymore. [ … ] So yes, I have a physical disability — it’s very hard to miss. It’s not saying anything less about me, it is just [part] of describing me as a Black woman [and a person with a disability],” she explains.
Though Reid is now comfortable with the word ‘disabled’, she often self-identifies as ‘differently abled’ instead. “I was born with a limb difference, so I don’t have from the elbows down. But yet still, I’m able to write, I’m able to type, I’m able to do everything just the same way — it just looks different when I do it. [ … ] My disability has given me a way of problem-solving in a different light, it gives me an opportunity to always think outside of the box,” says Reid.
Reid works in human resources and more recently has started doing modelling and commercial work. (Check her out in this Roots campaign!) Having grown up in Jamaica, she’s noticed differences in how disability is treated and viewed there, compared to Canadian society. “[Growing up] in Jamaica, it’s a little bit different in terms of… Jamaicans are more in your face about stuff. [I’d be asked] how I do things, [whereas in] Canada, it’s more of a politeness,” she explains. “While looking for a job [in Canada], I would be able to get past the phone screening interviews, the written interviews and so on. But then as soon as I showed up in person, it seemed as though [they would question] how [I was] going to do the job, [so] I started volunteering to disclose the fact that yes, I have a disability and I currently do not need any sort of accommodation,” she adds. In her experience, this Canadian politeness acted as a shroud disguising the ableism she was experiencing.
Reid sees disability as a positive part of humanity: “this is where the diversity of perspective comes in, and you’re able to see things that somebody else would never have seen or looked at in a different way. [ … ] What makes us different makes us unique, and it’s okay to stand out.”
Disability is personal
Disability means different things to different people depending on the barriers to access they are or are not facing. Realistically, if barriers to access are removed, disability would literally not exist. Like all aspects of our identity, disability is highly individualized, but that also means there is no one-size-fits-all label, no true umbrella term that all disabled people fit neatly under.
In policy, person-first language is often the go-to, but within the disability space, that’s not always true. Person-first language stems from the LGBTQ+ and HIV/AIDS communities. It was developed to restore their humanity while advocating for lifesaving healthcare. As a result, some folks shy away from appropriating nomenclature created by and for these communities. Terms like ‘special needs’, ‘handicapped’ and even ‘differently abled’ yield a mix of responses, as they may position disability as a personal problem instead of a byproduct of society instead.
Even with all this in mind, disabled folks have the right to self-identify with whatever label they feel most connected to. What feels right is often influenced by their individual circumstances and experiences with ableism, because disability is personal.
Rachel Romu is a Glossi Mag contributor.
They are an advocate for disability visibility and inclusion in the entertainment industry, an ATV stunt-driver and a zealous reality TV fan. Rachel also works at Matte PR.