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(TW: Ableism, Medical Abuse, Neglect, ED (Weight), Ableist Language) The other story from a 'Pillow Angel' Been there. Done that. Preferred to grow.

(TW: Ableism, Medical Abuse, Neglect, ED (Weight), Ableist Language)


Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents’ request, given a medical treatment called “growth attenuation” to prevent her growing. She had her uterus removed, had surgery on her breasts so they would not develop and was given hormone treatment. She is now known by the nickname her parents gave her — Pillow Angel.

The case of Ashley hit the media in January after publication of an article in a medical journal about her treatment. It reappeared in the news recently because of the admission by Children’s Hospital and Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only with the consent of a court.

At the time of the initial publicity about growth attenuation, Ashley’s parents wrote on their blog: “In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.”

I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s.

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I decided to make this post because the things that I see on tumblr that deal with ableism don’t mention the things that I want to be talked about, and I wanted to give an insight into what its like for me personally. I get a lot of asks, mainly anonymous ones, about my disability and how it affects me, and whether or not I approve of these questions I wanted to make something that would address some things.

Living with a disability (at least in Europe and I would hazard to guess in the US its mostly similar), you feel like the embodiment of something people don’t want. People are conditioned to prioritise ‘health’, or what they percieve as healthy i.e. able bodied and thin, over everything else. And because of this skewed idea of health, no matter how healthy I really am, I am never going to appear healthy. To society at large that makes me inferior, and I’m made to feel that way.

A lot of people believe that by treating me as a human being like anyone else they’re somehow doing me a favour. People say things like “I just talk to them like everyone else”, firstly as if I weren’t ‘like everyone else’, as if I’m somehow deficient and this person is stooping down to show me kindness, secondly as if it’s ‘us’ and ‘them’? And some even seem to think that when they joke about disability means they’re being somehow inclusive. Making a joke about a minority doesnt make you inclusive, it makes you a prick. And comments like “you’re lucky sitting down all day! rolling about hahaha” are not funny, treating me like everyone else is not the same as saying insensitive things about something that I’m treated like shit for most of the time.

I’m constantly talked down to when someone’s with me, as though the person pushing me is my carer. They direct their questions at the person with me instead of me as if there must be someone else in my life who looks after me and keeps records on how I live my life. And it’s always assumed that I need help. Like anyone else if I need help with something, I ask, but people think that I’m obviously incapable of everything because I’m in a wheelchair.

People feel like they’re owed an answer from me when they ask a question about my disabilty, and if I dont feel like answering then I’m just ‘being sensitive’. Or they think that because they’re ‘comfortable with it’ (it being my being in a wheelchair), they are entiteled to know everything about my life. I’ve had questions on how I have sex, if I dress myself, how I go to the bathroom, I’ve even been asked things that implied MY OWN choices in style (such as my piercings) were the result of someone else doing something TO me, rather than a choice I made myself. 

This is the overarching theme, its like constant infantilisation. Because some people with disabilities are cared for, and children are cared for, people treat them the same way. People underestimate the things that I know because of how I appear, they presume that I know less than the person standing next to me. They assume that everything in my life is the product of someone else’s choice.

Even with romantic relationships, as an unspoken thing that reflects through actions and the way they talk about me, at some point in the relationship most of my partners will play up the idea that they’re somehow doing something kind by loving me and being with me. And then they’ll say something like “well don’t you think this is hard for me too?”, which is basically blackmailing me for having a disability.

Nobody WANTS sympathy, nobody wants a different set of rules just for them. Some people perceive the benefits I get and the things the government gives me means I’m treated ‘better’ than able bodied people. but if society was equal for everyone, it wouldn’t be neccessary! I wouldn’t NEED these things to get by! I can’t even get on a bus or a train without it being a spectacle, the default system of transport, of everything really, isn’t built with me in mind. My ability to function and get around like everyone else is an afterthought, this is not a level playing field.

I had a friend in the past who  applied to university who also happened to be in a wheelchair. A friend of hers was applying for the same university, and although she had better qualifications, they accepted this girl’s able bodied friend over her, because they didnt know how to deal with a disabled student. because you have to have some kind of ‘training’, because its not part of the regular mold of teaching, again, it’s an afterthought.

On another note, the only person I can even think of in the media (bearing in mind I live in the UK) with a disability who isn’t an athlete is a childrens tv presenter named Cerrie Burnell who was born with one arm. It was never a big deal, it was very rarely mentioned and she just got on with her job as usual. When she started on the job multiple people complained that their children were afraid of her due to the way she looks, the BBC defended her and she’s still presenting now. She never did anything for or because of her disability, she was good at presenting so she did that. I just wish there were more people in the media like that. I admire and commend disabled atheletes, but they’re always doing ‘disabled sports’, its always connected to their disability. Cerrie Burnell is the only person I can think of other than disabled athletes, and thats sad.

Fictional characters in the media with disabilities are incredibly rare too, the only film I can think of with a disabled protagonist is Avatar. In Avatar, the lead character Jake Sully is a wheelchair user, but he’s played by an able bodied actor. In some scenes they actually used special effects to meld and actual wheelchair users legs with the actor’s upper half, all that rather than hire a disabled actor. Another point in this film is that for the most part Jake Sully ISN’T in a wheelchair, he’s using his ‘avatar’, so it’s minimal representation at best. And at the end of the film, he chooses to live the rest of his life in this avatar body, they made his wheelchair user status seem like such a horrible hardship that any chance he had to be rid of it was portrayed as some sort of wonderful second chance. and of course there are disadvantages to being a wheelchair, as I’ve talked about above MAINLY in the way people treat you, other than that you just get on with life. but its so shitty to see one of the few disabled characters in popular culture just be magically able-bodied by the end of the film.

This is just a collection of my thoughts that I wanted to get out, obviously I don’t believe everyone has these negative thoughts and feelings towards disabled people, but this is how I’m made to feel. If you’ve liked what I’ve said on the matter I’d really appreciate you reblogging this because I think it’s important for other people to see.

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