One reason why media representation matters is because it well and truly affects what nondisabled people think about disability -- like right after my health took a turn and my mom came to visit/help out for a few months and spent part of the trip reading "Me Before You"...
When I expressed my discomfort about her choice of reading material, it triggered an enormous fight (from which it has taken our relationship years to recover). During the course of this row, she told me -- among other things -- that she identified with the caretaker character.
I needed my mom to identify with me -- her daughter. It was a really challenging period for me (a diagnosis, a separation, a move, and a lost job due to disability discrimination), and to get through it, I needed to know she could see me and honour my needs on my terms.
She couldn't. She couldn't even understand why that was important to me. And it wasn't for lack of love. It was because she had never seen any other way of engaging with disability. She thought she was doing it "right".

I can't really blame her, in retrospect...
It is so socially ingrained that discussing bodyminds/disability is not fit for "polite conversation" (even in families), so the way ppl learn about disability without experiencing it is consuming media that misrepresents us -- making it impossible to know what you don't know.
And when most of the readily available stories are told by nondisabled ppl, from the perspective of nondisabled ppl, and for a nondisabled audience, the only option is identifying with the archetypes presented and objectifying disabled characters and, by extension, disabled ppl.
That fight with my mom remains one of my most painful memories. Having to assert my humanity to my own mother was devastating. My mother loves me dearly but was robbed of any already existing models for loving me on my terms, and I think that broke both of our hearts.
Disabled people need to have control of disability-related stories because those stories have a life beyond the page or screen. They infiltrate our relationships. We need to have control over the stories that can either enrich or impoverish available models of love and care.
So the thing I want ppl like @Sia to understand about representation is that it's not vanity. It's not just feeling misunderstood or offended. It's not art censorship. The fictions you create come to life and go on to have very real consequences in the communities you portray.
I feel like I need to add that my mom has since showed up for me in many important ways. I'd say that I'm lucky she has done so much to repair trust, but this is something that all disabled people are owed from the nondisabled people who love them but also don't know how to...

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More from @the_tweedy

22 Nov
Someone woke up on the clingy side of the bed this morning. A sleeping lynx point cat w...
So clingy and I love it. I'm not allowed to get up, I guess? A lynx point cat snuggles o...
Someone please tell me to get my ass out of bed because my cats are not doing it and I am cozy as fuck but I do have shit to accomplish today...
Read 5 tweets
21 Nov
I don't love the phrase "my wheelchair gave me my life back" -- because it didn't. It gave me something that I value even more: my life now.
I know that "____ gave me my life back" really means that some tool, mobility aid, or intervention was helpful for increasing wellbeing and managing symptoms, but I worry about the subtle yet value-laden "decripping" that is implied...
It seems to hinge on the assumption that bio/neurotypicality is the baseline to which we should all aspire "returning" -- and worse: that our lives do not count as such until we get as close as possible to this violently ableist norm.
Read 4 tweets
21 Nov

(Also grad schools: take a look at how equitable your funding packages are. Whose degrees are fully funded? Who can rely on family? Who is being forced to take on more paid work and/or take out loans?)
Being disabled is fucking expensive. If I had to rely on TAships alone, I would be homeless. My family has helped me cover the shortfall, but ALL of the disabled grad students I know whose families could not help out financially had to withdraw from grad school.
Even with my family's help, I still have to spend a much greater percentage of my functional hours than nondisabled peers working to fund my degree rather than working to finish it. They're able to publish, organize talks, attend conferences, etc... with their additional time.
Read 5 tweets
19 Nov
Sia has EDS. Sia is disabled. And yet Sia just busted out a technicolor middle finger to the disability community... Sigh.
It's bad enough when the call isn't coming from inside the house.
Yes, as someone pointed out: this particular middle finger is directed squarely at autistic folk, but disabled ppl need to have each other's backs -- and that means NT disabled ppl/nonautistic ND disabled ppl having autistic ppl's backs. Still a BIG NOPE to this lateral ableism.
Read 4 tweets
15 Nov
Them: disabled people can't be sexy.

Me: ok, I won't. A white person with short brown hair and tortoise shell glas
It would be just *terrible* if more disabled people retweeted this with pictures of themselves being NOT AT ALL sexy.
Ok, I have to get back to marking assignments. In the meantime, consider yourselves properly chastised for either being sexy and disabled or finding a disabled person sexy. Shame on you. Shame on all of us. 😂
Read 14 tweets
14 Nov
Back in high school, I participated in a disability simulation as part of a leadership program run by my city's chamber of commerce (yes, that sentence now produces three distinct cringes).

What it taught me was to fear the very life I now lead.
We were given wheelchairs and told to navigate a rehabilitation course, which was presented to us as an "obstacle course". The wheelchairs were heavy hospital chairs and far too large. The very first obstacle was a short ramp.
I was a competitive soccer goalkeeper and martial artist and also lifted weights, but I only made it a few feet up the ramp before my arms turned to jelly. I panicked, grabbed the railing, and then realized I couldn't take my hands off of the railing without rolling back down.
Read 10 tweets

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