I Am Not Your Pony

TW: discussion of inspiration porn, ableism and discrimination

So it is true that sometimes, people who have disabilities have to work harder to get the same result as a person without them. It is also true that some people credit this as ‘inspirational’.This is called ‘inspiration porn’ and it is bad.

It devalues people and their disabilities by reducing them to motivation for non-disabled people by saying ‘well you don’t have to work as hard so you can be normal too!’.

It enforces the nonsensical idea that disabilities mean people can do less, and that therefore doing normal things is something that should be praised and celebrated as an achievement.

It propagates the assumption that the having of a disability means life is terrible by default and it takes extra special courage to exist.

It reduces disabled people to a stereotype, assuming things like:

  • all disabled people, no matter what their body will or will not allow them to do, have to work extra hard to do normal things (i.e. that doing ‘normal things’ is not actually their usual state);
  • all disabled people are special sainted angels who regularly overcome mental illness just to exist;
  • all disabled people have to fight or overcome their disability in order to be in society, because disabled people are ‘other’;
  • all disabled people have sunshine and rainbows for breakfast;
  • it shifts the blame for anything which can’t be solved by optimism and effort onto the disabled person – “You can’t do stairs! There’s no lift! But you can walk sometimes, right, so just work hard and you can do it! See, you did it! You’re so brave! What do you mean, call am ambulance? We just got here and I’m so proud of you!”

 

It assumes that the state of having a disability is a negative, undesirable thing that people who live with it must be special just because they do, and that by ‘choosing’ to appear normal they should be praised for conforming anyway.

I could go on.  I had a metaphor planned out, except the textbook examples tend to involve dropping things off buildings and I don’t want to metaphorically talk about throwing people off buildings.

 

Basically, what inspiration porn does is, instead of recognising that a disabled person and a not-disabled person have the same potential energy, it assumes that a non-disabled person has less potential energy, therefore when both reach the ground at the same time because gravity acts on them to change their potential energy to kinetic energy in the same way at the same rate, they assume the not-disabled person worked harder.

A disabled person might, however, face more obstacles, but inspiration porn assumes all those obstacles act on all disabled people in the same way, or create some huge barrier that has to be smashed, etc. Some of those obstacles apply to non-disabled people – everyone who is tired may oversleep their alarm, everyone who looks femme gets sexist treatment from people who are determined to be sexist/misogynist, everyone has trouble breathing in smoke (someone with reduced lung function may have more trouble, but someone who has super healthy perfect lungs can still die from smoke inhalation). And gravity works on everyone the same way. But someone who is disabled, according to inspiration porn, should be praised and treated as special for doing the same things as everyone else, no matter whether it’s actually difficult for them or not, and without regard to their individual circumstances).

 

(For people who explain it differently, in case I suck with words today: here and here.)

 

The side-effect of ‘inspiration porn’ is ableism, and with that comes discrimination. It’s not just the ‘well, other disabled people can do this, so why can’t you?’ and ‘if you try harder you can do it!’ sort of thing, either.

With all this comes the idea society has that people who can’t do things, or won’t, are not trying hard enough. They’re not being inspirational enough. They’re not good enough.

If you’re not trying to fix or overcome, and instead are happy to adapt as best you can and deal with the rest as it comes, it’s not inspirational, because your normal looks different. It’s only inspirational (therefore acceptable) if your normal looks the same as someone without a disability, someone whose normal is within societal parameters. You become invisible, or derided, or cast out, because you don’t fit the narrative. (And there are narratives. The inspirational-shut-in-who-gets-better-with-Courage-and-Kindness is an outdated literary trope. It’s just not outdated in society.) You don’t get to choose how you live, because society wants you to be a meme, and not being a meme is bad, apparently.

The enhanced visibility of people who do meet ‘normal’ contributes to the lack of understanding of invisible disabilities – to be the meme, you have to be seen overcoming, after all, because invisible things don’t tend to make good pictures. It contributes to the lack of acceptance for disabilities which don’t allow for that kind of normal, or creates an image of them that is not realistic to everyone it is meant to fit. This is where ‘you have to be in a wheelchair all the time or you’re making it up’ comes from, because wheelchairs are for people who can’t walk all the time, and not for people who have mobility issues that don’t involve permanent paralysis, or who get tired easily, or whatever. (See how this intersects? Not only does it have to be visible, it has to be visible all the time, and you have to overcome all the time so that it is invisible so that people don’t have to accommodate you. ) It’s also where ‘but disabled people can have normal lives so they don’t need accommodations’ comes from, causing no end of pain and inaccessibility, even for socially acceptable or impermanent conditions that don’t actually impact quality of life or someone’s capabilities. You can walk sometimes so we don’t need to build a ramp or a lift, you can just walk up the stairs! You just need to not have panic attacks, then you won’t need to be allowed to leave and find a space where everyone’s not watching you!

I can kind of see in my head everyone’s eyes rolling, as they remember a similar incident that is uniquely applicable to them.

And then there’s ‘but you can be normal so you can’t be sick!’. Because you’re not a meme.

 

Here is another way it affects us:

Treatment

The emphasis in treatment is, generally, ‘get better’. We don’t get quality of life judgments unless it’s terminal, and disability isn’t terminal in and of itself. This is the place where things like deaf children being forced to speak rather than allowed to learn sign or communicate in other ways comes from. (I personally hate it when someone works out I can’t talk and shoves a piece of paper at me, assuming that I must be able to write, and starts writing to me, because they assume that not talking means I am Deaf. I am not. I can’t understand half what I hear, but I can hear it.) It’s where people go to the lengths of travelling for expensive, illegal treatment in order to please someone who can’t adjust their expectations to accommodate a variation on normal. (People do travel for treatment of entirely their own volition, too, and some people choose not to travel because they would rather not. Any choice which is a person’s own is okay here – but being entirely motivated by someone else’s expectations and a fear of losing them/letting them down? That could well be coercion. It’s situational and not the same for everyone.) It’s where choosing not to ‘fight’ and instead to adapt is considered bad. If you don’t want to travel to a major city for treatment, then you get it shoved at you until you agree or walk out – you don’t get alternatives. If you can’t travel? You’re meant to do it anyway, because it’s not that hard and normal people do it. You’re expected to fight to get better and go back to being socially acceptable, or a socially acceptable meme. You’re not meant to decide that it’s in your best interest to rent a wheelchair and get heavy groceries delivered rather than leave your entire support structure behind to go have a risky surgery which isn’t even guaranteed to work. We’re not meant to accept our condition and our new parameters, even if we work with them to be just as productive and fulfilled, because we don’t fit the meme – we don’t look inspirational doing normal things normally.

 

We remind people that normal isn’t the same for everyone. This is meant to be avoided, and we don’t, and as a result we are denied treatment and assistance, we are barred from doing things, and when we do manage to fit in, we’re praised for it.

You know, like how you train a dog by feeding it when it behaves and not feeding it when it doesn’t. “No, Fido, you pee outside!”

Except, you know, then Fido gets put down because the cancer pushing on his bladder became inoperable, and we don’t let animals suffer nearly as much as we make people do. Why? Because people are meant to fight, to overcome, and we don’t consider quality of life until a bunch of doctors agree there’s nothing more that can be done. Not whether it should be done, or whether the outcome is less beneficial than if it wasn’t – these questions are only asked after ‘will it fix the thing?’ gets a no. For example:

Can we get rid of the cancer entirely? No. Will chemo make it better? Maybe. Will dealing with chemo make the last three months worse than if we didn’t do chemo? Probably not. Are there less consuming methods of pain relief we can use? Yes.

Now imagine if that was:

Can we get rid of anxiety entirely? No. Will meds make it better? Maybe. Will dealing with the side effects of these meds make life better than if we didn’t try them? Possibly not. Are there other things we can try first? Yes.

I picked anxiety for the example because it’s invisible, people who have it visibly get shamed, and more often than not medication doesn’t work/doesn’t work initially/is inappropriate anyway/doesn’t keep working/has brutal side effects. Anxiety is often diagnosed instead of more investigation showing that the anxiety is a symptom. People who get put on anxiety meds sometimes stay on them just to avoid withdrawal, or become the socially acceptable form of dependent. The first-line treatment is medication, because it’s meant to stop the anxiety (that it doesn’t in like, at least half, of all cases, is irrelevant. Medication fixes stuff, says big pharma.) and make people socially acceptable again. The first-line treatment doesn’t involve anything about ‘how to cope with’. This comes after the medication, if it doesn’t work or doesn’t work enough. People assume everyone with anxiety medicates, and if you don’t medicate it’s bad. (Insert: media blaming violent criminal offences on unmedicated mental illness. They are not normal. They have not overcome. They do not fit in. Therefore, all unmedicated people with mental illness are dangerous and bad. People who do fit in should be medicated and praised for it.)

The other thing about anxiety is that a lot of therapies, once people get to that point, still focus on getting rid of anxiety. Exposure therapy – by repeatedly experiencing traumatic things you learn not to be traumatised by them. (But it’s not okay for someone to get used to repeatedly being harassed/beaten/whatever.) CBT – channel the anxiety into something socially acceptable. EMDR – make anxiety go away with flashy tech. It’s only when they don’t work, or in combination with those, that you get to ‘coping with anxiety’. You can’t choose that on its own, because that would be choosing to accept it and deal with it on your terms, and that’s not socially acceptable. (Never mind that everyone experiences anxiety, and the whole point here is that there is a socially unacceptable level and the point of treatment is to make people fit back in.) And you can get this far, and then find out that the anxiety is not going away because it’s a symptom of something else, meaning you’ve been put through hell and spent a lot of money for a thing that wasn’t ever going to fix it anyway. The choice, though, to cope with it and investigate further? Wasn’t there. Because we’re not meant to accept things, we have to overcome them, so we too, can be a meme.

 

This has been on my mind lately. My psychiatrist only just now asked if I even want to talk again, and then tried to make me justify why I don’t want to. I’ve repeatedly stated that I accept this is a thing I will have to deal with for the rest of my life and I want to focus on adapting. He wants me to be fixed. I know it can’t be fixed. (He loves to say people instinctively know what they need. He ignores my instincts. I’m promising myself that I will leave. It feels like leaving an abusive relationship, with all the planning and secrecy and so on. I would actually know, and it’s, well, complicated. Anyway.)

The concept that I might not want to be fixed hadn’t even occurred to him before. Anything which didn’t fit his idea of me was disregarded, including the whole not-a-girl, massive-dysphoria thing which he thinks will be fixed by PTSD-focused exposure therapy because I should be able to go outside and not be bothered when people start touching me because they think I’m pretty. (The problem is that shouldn’t happen, not that it shouldn’t bother me. Because, well, it should. It does. I am not a meme and I am not an object. I should not have to deal with people coming up to me and pat me while they ask if my hair is real. )

 

There’s another reason this is on my mind, specifically today (well, yesterday. This post has been a few hours in the writing.) It’s the Fringe at the moment, and I go to one show a year, and this year, I went to a talk by a singer. I was greatly relieved because while it was billed as interactive, the ad I saw specifically stated that one could just sit in the back and listen, and that singing wasn’t a requirement.

So I got there, and after there not being enough spaces to sit down while we waited for the room to open, no non-alcoholic non-fruit drinks, and an old man cornering me against the wall to tell me how pretty I looked (for, you know, being the only person under 50 there at the time, as if being told how pretty you are by someone twice your age is ever appropriate), I found a seat at the back. It wasn’t a very comfortable seat, and my back was already hating me for not being able to rest it after I drove there.

So then the singer came in, admitted to lying in the ad because he wanted to know if we felt nervous being asked to sing on the spot, and made everyone in the room sing.

That included me. Would you like to know how I felt? Absurdly grateful that I hadn’t trusted the ad and had prepared something in case. I had my comfort bear in my hands so I didn’t scratch and start bleeding in front of everyone. My brain was blank except for the words going over and over and getting mixed up in my head until I didn’t know what they were. I started shaking.

And I felt betrayed.

And then everyone clapped.

They didn’t move on. I had to tell everyone how I felt and I couldn’t find the words. My brain was still blank, like it was someone else’s. I defaulted to the words I practice. ‘I have a brain disorder. I can’t make words.’

You’re so brave. Thank you for sharing that. That’s a great example. See, if you’re just confident and think the right way, you can overcome anything! See, anyone can sing! We’ll come back to you later.

It didn’t end. Out of thirty three people, three people had to go stand in front of everyone and sing more. One of them, naturally, was me. I couldn’t make the word no. I had to stand there while he talked, my back feeling like it was split in two and the light from the window reaching into my brain and cutting. “Hold your arms up! Like a ballet dancer!” he said, and then brought his hands under my hands and whacked them up, telling me not to resist as my shoulder went the wrong direction and sent pain shooting up my neck.

“Now sing like that!” he said.

Apparently I sounded so beautiful I made someone cry. This was to be praised, because making someone cry is the pinnacle of a singer’s career. Or something. (You would think that would mean I had peaked and I could sit down again, but no.)

He asked how it made me feel and all I could make in my head was a picture of Audrey Hepburn in My Fair Lady – sitting on that chair, with the posture collar and the gramophone, forced to say ‘aaaaaaaaeeeeeeeeeeeeeeeeeeeaaaaaaaaaaaayyy’ over and over. “Great example! See how there’s lots of sounds in a single syllable! We can work on that. Do it again!” he said.

I was being used as inspiration porn for these other people. Because, you know, if I can make sounds, everyone else can too!

 

Afterwards, I waited for everyone to leave so that I could get out unimpeded. I failed. The man I made cry had to tell me. The man who stopped me before to tell me how pretty I was had to do it again to make sure I understood.

And the singer?

“I can fix you. Email me to set up lessons. You have something special in there that needs to get out.”

When I tried to leave and the man stopped me and I tried not to sink into the floor as I curtsied and pretended that I was grateful, and words didn’t come out. “We can fix that too,” the singer said.

 

My mum is so excited. She thinks that him offering to teach me is a compliment because he’s famous.

 

I’m like, weighing up, if I do this, does that mean the psychiatrist will stop pressuring me and maybe let me focus on what I need? (But then I decided to quit him, so.) How much education will it take for him to not put me in a group lesson as inspiration porn? Will he respect me if I tell him not to touch me again? (Remembering how ‘please don’t’ wouldn’t come out because I was so humiliated, and I was really thinking how grateful I was I left my bear on my bag because he might have been taken away.) Will he stop saying he can fix me if I tell him I don’t want to be fixed? What will happen if I’m not having a panic attack and therefore words don’t come out?

But you know, it’s such an opportunity, I’m so lucky.

He wants to fix me, be my saviour. Even if he wasn’t twice my age and identifying male, that’s not okay. He shouldn’t have lied about the nature of his talk, or treated me as inspiration porn. He shouldn’t feel like I need to be fixed, or assume that I want to be, or that anything is wrong anyway.

But he fixed someone else, and his son stuttered, so he says he totally gets it and he’s experience and he thinks it will be interesting. It’s not even about me, is it? Fixing me is a trophy for him.

He wants me to be his Eliza.

Society has told him that people with disabilities just need to work harder and that when they do things normal people do it’s an achievement that needs celebration in public. Society has told him that people with disabilities want to be normal and need to be fixed so that they fit in. Inspiration porn has done that. He picked me for his example because of my disability – he could have picked anyone, but he chose me, because I would be inspiration porn. Someone else could have done the same, but he put that on me, knowing it was harder – it’s discrimination. Assuming that I want/need to be fixed, and all I need is an old white man to fix me? Ableism – that I need to conform to the default at all.

 

So imagine, please, if you would like, how I felt to find him advertising a repeat of his ‘talk’. “Last week was really special because of the wonderful people who were involved.” Okay, right? It’s generic enough that, well, I know he means me, but nobody else does, right?

And then, because tickets still hadn’t sold (yes, I had to pay for the privilege of being used this way), he posted feedback. “It was special how he gave extra attention and helped this young woman.” (I AM NOT A WOMAN.) It’s not even about me, and how ~*inspirational*~ I was – it’s about how special and inspirational he is for what he did to me. For lying, for putting me in that situation, for ‘fixing’ me. Because this is also a side-effect of inspiration porn – people who are seen to “help” are venerated and considered special and charitable etc. etc., even when it’s to people who don’t want help, and don’t need it. (Wheelchair example – “you’re so considerate, you pushed that person to the right place, and just in time!” when the person is a wheelchair athlete and was perfectly capable of wheeling themselves., and would have got there faster if they didn’t have to put up with this person inserting themselves into their lives.)  Inspiration porn stereotypes and objectifies people with disabilities, therefore when people ‘help’ them, they’re just an object in that person’s story. This is also not okay.

 

So far from okay.

 

I should have been allowed to opt out.  Before me, people who tried to opt out were verbally harassed (sorry, “encouraged”) into participating. It only stopped when they sang, or read from a poem. I reached for my bear because I was afraid. This drew attention to me, and I was scared of him harassing me if the words didn’t come out. When I tried to stop, he wouldn’t let me. Everyone clapped when he let me stop.

I felt sad. I wanted to cry.

 

I hated myself for giving in, knowing that I would be spending the next week sleeping sixteen hours a day and unable to eat properly because my throat would swell up again, for not being able to tell him to stop because I hadn’t practiced it and solidified the words. And then I realised I shouldn’t have to hate myself, because I wasn’t the problem here. He was. He lied and said his talk would be accessible to me and it wasn’t. He didn’t ask if I wanted to be made an example of. And he’s so proud of that he’s using it to advertise.

Yep, he’s using the fact he hurt me to advertise a thing he’s being paid for. It’s not enough to objectify me, and feed in to a pattern of people only valuing me for my voice, he has to use it for his own gain.

And this is where inspiration porn ends. Exploitation for monetary gain.

 

I’m suddenly really grateful that when we got to the also-not-informed-of-in-advance ‘write your name on a sticky label!’ that I didn’t try using my actual name. Sure, my ticket was under that name, and we all had to be ticked off the list instead of showing our tickets like how tickets are meant to be used, but when it comes to trying to write something legible in texta on a sticky note… yeah. At least I won’t start getting requests on Facebook or whatever. Maybe. I, at least, got to keep some kind of privacy.

But when I quit singing lessons last year, even among all the ableism and sexual harassment in that situation, it was because it was the right choice for me. I was terrified of attending. It meant I couldn’t eat, because if I eat I can’t breathe to make sound come out, and I can barely breathe anyway and there’s this crunching sound if I try to take anything but shallow breaths. I wasn’t allowed to have quiet time before and the owner would try to bully me into letting him watch. Most of my lesson was spent being support person for my teacher, and he would tell me how good I was and how he didn’t believe I was really sick. I wasn’t allowed to participate in concerts because the owner thought it was too hard for me and my teacher didn’t want to share me. It was yet another toxic environment, and I did not benefit, and the effort I needed to put in meant I was unable to do anything else, including fight for treatment for my physical issues which are definitely not psychosomatic. (No, really. If something predates a traumatic incident which causes a psychological consequence, the psychological consequence did not cause that thing. That’s not how time works. Except if you’re a physicist.)

And I resent my choice being taken away to be inspirational for others. Even when there’s not money involved (because, yes, these lessons which are meant to fix me? Not free.)

 

I remember the moment where I made the active choice to stop trying to be fixed. My parents were fighting. I left the room and prayed and when I went back I said one thing. My dad started screaming at me. “If you can say that, why can’t you talk all the time?”

I cried, and left again. Somehow, despite having trouble talking all my life, my dad had never noticed. In order for my disability to be respected, I have to show it. Like a person who can walk sometimes but has better quality of life using a wheelchair, I talk when it’s necessary to protect myself from harm (arguably, being berated for not talking in public would be more harmful than being used as inspiration porn, but I was so scared I had dissociated and wasn’t actively able to make that as a rational decision – I did what I was told to minimise the risk of personal consequences), otherwise, I don’t. Most of the time, I can’t anyway, so it’s also not a choice. It’s also not really a choice when talking makes my throat hurt and swell and requires so much effort that it’s basically like climbing a rock wall with nails sticking out of the rocks. It isn’t my default, it never has been. That is okay, and it is not inspiring or wonderful or special or motivating. It just is.

 

 

 

 

 

 

 

 

 

 

 

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