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International Disabled Persons’ Day: Meet the activists behind #BeingDisabledDoesDefineMe

Ahead of International Disabled Persons’ Day (IDPD), Liam O’Dell spoke to campaigners Charis Hill and Karli Drew about society viewing disability as a ‘dirty word’, and their Twitter campaign to champion disabled identities.

“There wasn’t any discussion other than, ‘why doesn’t this hashtag exist yet?'”, Californian Charis Hill tells me over e-mail. Together with fellow disability activist Karli Drew, they launched the #BeingDisabledDoesDefineMe hashtag on Twitter, with the hope of empowering and validating the disability community.

“I think it was just time, you know,” explains Karli. “It’s 2020 and so many non-disabled people still downplay what being disabled really means to us and our identities. Especially with this pandemic – their misguided attitudes have become increasingly more dangerous. We can’t ignore our disabilities, and we don’t want society to ignore them either.

“Even so, this hashtag was meant for disabled people,” she continues. “It’s nothing we didn’t already know, I think it just acted as a reminder. Our experiences are all different, but the fact remains: disability shapes us and it’s not a bad thing.”

Our conversations follow musician Sia Furler facing criticism for casting speaking, non-autistic actress Maddie Ziegler as an autistic girl in her debut film, Music. In response to comments on Twitter around her decision not to cast a disabled person in the role, the Chandelier singer said she never referred to the character as disabled, instead using the term ‘special abilities’ to describe Music’s disability.

If it isn’t ‘special abilities’, then it’s ‘differently abled’. New phrases are being used instead of the word disabled, and Charis feels that wider society still believes the term is a ‘dirty word’.

“[Like] something that no one would ever want to be,” they add. “This is part of a much larger picture of systemic ableism and capitalism.”

The blogger, who is autistic and lives with spondyloarthritis, post-traumatic stress disorder (PTSD), depression and anxiety, also says that people feel strongly about identity-first versus person-first language, which “often stems” from a knowledge of the social model of disability – or a lack thereof.

Used by many disabled people and disability organisations, the model proposes a different approach to one which is more medicalised. “The model says that people are disabled by barriers in society, not by their impairment or difference,” the UK disability charity Scope writes on their website. “Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.”

“For example, I’m a queer, trans, impoverished, disabled person,” continues Charis, who says the “unique and sudden shift” into the social model allowed them to stop gaslighting themselves. “All these are identities that impact how I move through and understand the world – there’s no removing any of these identities from me; I’m not whole without them.

“So, I’m not a person who is queer; I’m queer, period. I’m not a person who is trans; I’m trans, period.”

A possible solution to the shying away from the word ‘disabled’ came on 22 November. Karli, who is visibly disabled from spinal muscular atrophy (SMA) and invisibly disabled from other diagnoses, tweeted: “Being disabled *does* define me.”

They tell me it was a spontaneous decision – one which was short and unambiguous – but after Charis suggested it become a hashtag, the idea “took on a life of its own”.

“It resonated with me because so many disabled people claim being disabled as an identity we’re proud of,” reveals Charis. “Being disabled can’t somehow be separated from who I am. Quite frankly, it feels insulting when people suggest that I’m ‘not my disability’, as if they’re trying to sooth me about something they see as negative.”

Karli has had similar experience, too, with ‘being disabled does define me’ being a phrase she has thought about for a long time. “Specifically, every time someone tries to tell me it doesn’t define who I am,” they explain. “I find it’s often said in a way that’s intended to deny us our necessary accommodations and such, so I wanted to make a blanket statement for all these encounters. I wanted to flip the script.”

Flipped it was indeed, with Charis seeing individuals “tentatively grasping” the hashtag, and potentially identifying as disabled for the first time. “Honestly, that’s so beautiful to witness,” they say, “because it reminds me of when I embraced being disabled. I felt whole again, and I was excited to learn about this culture I was part of.”

Meanwhile for Karli, the process towards accepting that disability defines her is something that is a constant journey.

“There’s always more I’m learning to love about my disabled self,” they explain. “I don’t think I can pinpoint an exact moment where I suddenly embraced it; my take on it has just evolved over the years. I’ve always accepted my whole being, the main thing that changed was my language surrounding disability.

“I do remember being young and saying, ‘it doesn’t define me’, yet I also remember following it up with, ‘but it’s a fundamental part of who I am’.

“My adult view is obviously more meaningful and freeing, but I never loathed myself for being disabled,” she concludes.

More information about Karli and Charis can be found on their respective Twitter accounts – @KarLeia and @BeingCharisBlog.


Photo of Charis: Courtesy of Glenn Jones/Ikona Photography copyright 2019.

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