Inspiration porn, cripple punk and why I refuse to be grateful for my chronic illness

An enamel brooch in the shape of a love heart. The banner across the brooch reads
Disabled enamel pin. You can purchase from NormalLand on Etsy. Isn’t it perfect?

Today I’m sharing with you another piece I had published on The Mighty. Firstly, if you are a spoonie, or know someone who is, check that website out! It has contributions from people with all different abilities and illnesses speaking from the heart about their experiences. You’ll get lost in a rabbit warren of amazing stories, believe me.

After this piece was published, I received many comments complimenting me on my ability to make the best out of my illness. I’m not sure that was my intent when writing. Sometimes you have to laugh at the ridiculous situations your illness places you in (strolling naked along a hospital corridor after being showered by nurses? Anyone?), and I have grown as a person since becoming sick. However, this doesn’t mean I have to be grateful for my illness, or enjoy it.


I’m very wary of perpetuating the stereotype of the “Good Disabled” person. That is, someone who is thankful for their condition, who has learnt from it and become a Better Person. Someone who tries their darndest to get better, who visits doctors regularly and smiles and nods when they are told they must be faking it, or should try X therapy again. Someone who isn’t visibly disabled, and doesn’t make able-bodied people feel uncomfortable by being so. In other words, someone who hides their disability.

Woefully inaccurate media depictions of disability reflect society’s tendency to shun the lived experiences of disabled people. In The Fault in Our Stars, attractive teenagers fall in love, with cancer acting as only another obstacle to their melodramatically fated relationship. It rears its ugly head only when convenient to the plot: lung collapse and violent coughing take a back seat when a character needs to climb a steep staircase then later make love to her teenaged boyfriend. Quirky characters exist with a wink and nod towards Asperger’s – tidy, pedantic and unchanging. The cutesy treatment obviates the real challenges that come with being on the spectrum, such as sensory processing disorder, social anxiety, and feeling adrift in a world of social conventions that are impossible to understand.

I was going to include an image here of The Fault In Our Stars, but the movie posters make me want to throw up. So here's a visual representation of my feelings towards John Greene.
I was going to include an image here of The Fault In Our Stars, but the movie posters make me want to throw up. So here’s a visual representation of my feelings towards John Greene.

Mental illness serves as a neon warning sign to viewers: THIS CHARACTER IS DANGEROUS. Despite the mentally ill being more at risk of being victims of violence rather than perpetrators, all it takes is a diagnosis to turn a TV character into a mass murderer. I nearly cried when my beloved Midsomer Murders (I know, I know) concluded a recent mystery by unveiling the murderer as a traumatised woman who had struggled to overcome a host of anxiety disorders, including OCD and agoraphobia, after her daughter’s death many years ago. The fact that she had been abused and manipulated for all these years by her supposed best friend and counsellor, who also happened to kill her daughter, was of no consequence.

They did kill Martine McCutcheon with a giant wheel of cheese, so maybe I’m looking for realism in the wrong places

The “Evil Cripple” is a trope that kindly helps audiences recognise who they should fear in a story. We know villains by their wheelchairs, canes, ugly scars and, in the case of Casino Royale‘s Le Chiffre, an ever-present asthma pump. The implication is clear: the disabled are “other” and therefore sinister.

Even in the rare case that a character’s disability is portrayed accurately, you can be guaranteed that they will not be played by a disabled actor. The film industry has no qualms about churning out tropes of disability, no matter how inaccurate or offensive, but apparently draws the line at presenting actual disability on screen. The only acceptable disability, it would seem, is a fake one.

tumblr_o51dlle2yt1tdeug4o1_1280
Silver asthma pumps: a clear sign of a deviant.

But as we do not live in the movie world, we are forced to find other ways to appease our real-life audience. Instead, we become the “Good Disabled.” The “Good Disabled” only exist relative to the able-bodied people around them. They are denied personality, dreams, hopes and vision. They are the essence of inspiration porn; based on athlete Scott Hamilton’s now-famous quip, “the only disability in life is a bad attitude”. (He offered no such sage advice for those who were not privileged enough to be able to rely on their body for their career.) Pictures of men, women and children with visible disabilities are plastered all over Facebook, presumably without their consent, to act as a reminder to able-bodied people that at least they don’t have it that bad. No one asks the subject of the image what they think of this.

Let's not get into the inclusion of Oscar Pistorius in this image
Let’s not get into the inclusion of Oscar Pistorius in this image

In a society where disability erasure is like second nature, being disabled (not “Good Disabled”) is a bold statement. Acknowledging that having a disability or chronic illness can be really, really shit, is shocking. And refusing to thank God, the universe and everything for a crippling disability can seem like ungratefulness (why can’t you just be happy you’re ill?). Perhaps this is because when the disabled start to express these kinds of opinions, they force others to look at them as people, rather than inspiration or stereotypes.

We spoonies have it within our power to reject society’s ableist narratives and build our own. Movements such as cripple punk celebrate the “Bad Disabled” – people who smoke, drink, and eat junk food. Who don’t try shoving kale up their asses because someone on the internet said so. People who rely on walking aids, who decorate their canes, and who refuse to be silenced.

Urban Dictionary sums it up:

“A movement that is exclusively by the physically disabled for the physically disabled. It’s about rejecting pity, inspiration porn, & all other forms of ableism. It ejects the “good cripple” mythos. Cripple Punk is here for the bitter cripple, the uninspirational cripple, the smoking cripple, the drinking cripple, the addict cripple, the cripple who hasn’t “tried everything”. Cripple Punk fights internalized ableism & fully supports those struggling with it. It respects intersections of race, culture, gender, sexual/romantic orientation, size, intersex status, mental illness/neuroatypical status, survivor status, etc. Cripple Punk does not pander to the able bodied.”

Like the human rights slogan, “nothing about us, without us, is for us,” cripple punk is run for the disabled, by the disabled. The disabled always speak first – able-bodied people cannot speak over the top of us, or for us. They may only ever amplify the voices of the disabled. The different intersections and lived experiences of the disabled are respected.

Cripple punk promotes what is truly a radical idea – that disabled people can own their body as is. There is no need to to strive to conform or be thankful for our fate. Enforced positivity is rejected. Cripple punk infuses disabled bodies with agency, an element which is denied by so much conventional treatment of disability. Our disabled bodies can exist in a public space, without apology or a requisite companion/carer to diffuse our “difference”. We can dance, unshamed, as Stella Young did (before being patronised by those surprised by the presence of a disabled body on the dancefloor). In cpunk, disabled people are autonomous. We choose how we feel about our bodies, freed from the constraints of the judgement of others.

For followers of cripple punk, we disabled folk are not here for your inspiration. We refuse to gratify an ableist belief that if we just try to be happier, our physical disabilities can be “overcome”. Yes, I can laugh at my illness, and yes, I am truly thankful for the lessons I have learnt along the way. I can celebrate the bright side of my illness, whilst acknowledging the devastating impact it has had on my life. Because I am not your “Good Disabled,” and nor should I be. I am unapologetically disabled.

 

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

8 thoughts on “Inspiration porn, cripple punk and why I refuse to be grateful for my chronic illness”

  1. Very eloquently put Siobhan. Sometimes it feels like you’re not ‘sick’ enough to be chronically ill because ‘you don’t look sick’ and then other times it’s like ‘oh you’re too sick’.
    I’m not a fan of any of those inspirational things whether they feature humans, trees or mountains – you wanna inspire me, gimme cake or chocolate. Not sure if I like the term ‘cripple punk’ purely because I don’t like the word cripple, but I certainly agree with the sentiment (as I sit here in my hospital room typing this). And for godssake stop telling me how ‘amazing’ I am for putting up with what I do. What the hell else would I do. (I have an aunt of my Dad who does this all the time. She doesn’t mean anything by it, but it’s damn annoying.)

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    1. Cake and chocolate for inspiration for sure, Chantelle! You don’t have to feel like the word “cripple” applies to you too be a part of cripple punk. The term “cpunk” can be used by any who feel uncomfortable with the slur.

      That’s a good question – what choice do we have in these situations? Very little, I fear. I hope your hospital stay is brief x

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  2. I’m glad you found my blog somewhere because now I know about yours and can read awesome things such as this post! I was diagnosed with fibromyalgia a little over a year ago, and I still have trouble classifying myself as “disabled.” My fibromyalgia is not severe as long as I take my medications, and it’s mostly hidden to other people, so I feel somewhat like a fraud saying I’m disabled. But my pain has limited me in ways that make life very difficult, and I strongly identify with being a Spoonie. It takes far more out of me to get to work on public transit than it does other people, as just one example of how I have to use up spoons early in the day that other people never have to think about. I’d never heard of cripple punk specifically, but it aligns with so much of what I value in other spheres, like feminism and fat acceptance, so I’m really glad I learned about it. I look forward to sticking around for the sewing and disability talk here!

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    1. Thanks for your kind comment! It took me a long time to adapt to the term “disabled.” And I still struggle with feelings of being not disabled enough, especially as I have no visible signs. I reckon it’s internalised ableism that I have to shut down within myself. I mean, if your condition/pain etc stops you from living life fully, then you are absolutely entitled to accomodations. Being a woman spoonie is especially hard as women are so conditioned to plough on and not make a fuss.

      I’m glad you can identify with cripple punk. I think it is a fantastic movement and there are lots of interesting writings about it around. Happy to have you reading! x

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  3. I really love this post. I have a severe mental illness and I refuse to be a “good” psych. patient who is “grateful for all the lessons my bipolar has taught me.” Being sick sucks!

    In a side note-how do you pronounce your name? (I see that name in the UK a lot but it’s not so common in the States.)

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    1. Glad you liked it! Agreed, being sick does suck. I have some beloved friends with bipolar and their health journey has been anything but fun. So I really feel for you.

      It is pronounced “Sha-von” – but I tend to Ockerise it as “Sharvorrrn” haha. I’m in Australia so it’s not that common, but it does seem to be growing in popularity.

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