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...