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On #IDPWD I want to talk about a taboo subject that often makes people uncomfortable - the performance of disability. Being disabled isn't only experiencing disability, it's also about having to perform it in socially acceptable and normative ways
Society likes "nice" disabled people, who are compliant with normative expectations, do not challenge them, and who seem like they are trying to be and live, a "normal" life. We are often only comfortable with disability when we think people are working towards being normalised.
We celebrate a selective portion of the disabled population who we consider to be inspirational, who have "overcome", who are "living a great life DESPITE their disability". Wrap it up in any fancy and celebratory language all you like - its ableism with a bit of sparkle.
Being disabled includes couching your language and narrative in ways that don't make non-disabled uncomfortable. It includes not saying or doing things to keep the peace. It includes playing into the stereotypes that huant you to be able to access support you desperately need.
Being disabled includes giving up political rights to protest so you don't lose access to benefits when the police hand your details over to the #DWP because if you can "protest for disabled rights, you can work" apparently. It is surrendering your voice, in exchange for support.
Being disabled means not talking about ableism because "not all abled people" will be the refrain you inevitably hear from someone who is currently performing an act of ableism - like not providing wheelchair access, using slurs, attacking Trumps "ability" and not his bigotry.
Disabled people have to preform disability to check boxes, jump through hoops to get support, have rights, and to discuss the every day aspects of our lives - only to be told that "we shouldn't let our disability define us". While, non-disabled society does it in unspoken ways.
On #IDPWD I am thinking mostly of all the disabled people who jumped through ALL the damn hoops they had to to live as disabled people, only to be killed by the governments inadequacy during COVID. The DNR's that were blanketed. Able bodied people who got preferential treatment.
The disabled people who preformed disability in all the ways that we tell disabled people that they have to, only to get less care, treatment, empathy, dignity, and respect in medical, residential, and state settings. 60% of people who died in the first wave were #disabled.
I see tweets from our prime minister who will praise the disabled people that he likes, the ones who don't challenge his idea of the "good life". Today, I celebrate all disabled peoples and stories, including that ones that make non-disabled people uncomfortable.
I celebrate the disabled people that our government call "scroungers and frauds". I celebrate the "nasty" disabled people who fight to be recognised as human. I celebrate the people who have been told they are unworthy of respect and life - time and time again.
I celebrate the interdependence of disabled people who need higher supports, who are described as incomplete because they do not "reach" some arbitrary level of independence in a world obsessed with the idea of complete and radical self-sufficency.
I celebrate the joy, happiness, creativity, and dignity of the "messy" disabled people who are complicated and nuanced, even in the face of the oversimplication of the life available to them. The ones any other day of the year are described as tragedies, and mistakes.
Disabled people do not perform disability because disability is a performance - we do it to access the basic human rights, support, and dignity that other people are given by virtue of being able-bodied. Then able-bodied people have the gall to say we are pretending.
Make no mistake: normative culture, and rampant ableism makes the hoops we jump through, we do it just to survive.
So celebrate disabled people, but also celebrate the ones who have made you uncomfortable, uneasy, called you out or in, and who have challenged the way you consider life. If you are only celebrating the disabled people who look like you, then you are doing it wrong.
I don't often talk about disability openly and honestly, because it is still, after all this time, taboo. I am disabled in good, bad, happy, sad, brilliant, weird, odd, and painful ways. People say "but you don't seem disabled to me" and its because you have left no room for it.
I've been told to hide my autism, downplay my disability, don't talk about chronic illness or pain, pretend to normal and then are surprised when I seem "normal". Let people have nuanced conversations about disability, let it be a complicated thing.
Thank you for coming to my impromptu TED talk.
