Able friends: I am not your inspiration porn #inspirationporn #disabilities #epilepsy #chiari #ptsd #bipolar

I woke up this morning after a fitful and sweaty non-sleep to a Facebook feed of inspiration porn. Three of the posts or memes ended with some variation on “What’s your excuse?”

My “excuse?” My Chiari, one of several neurological disabilities I have, is acting up, which means:

  • my skull feels like it is trying to separate from the dura mater
  • crushing pain in the back of my neck
  • poor coordination –  I dropped a glass from lack of coordination. A shard embedded in my foot, and I actually walked off with my foot bleeding and forgot –at that very moment–what had happened. My husband came home and found the glass, which he cleaned up. Which leads to the next symptom ….
  • brain fog
  • somnolence
  • dizziness and syncope
  • word-finding issues, which seem a bit better this morning, although this post has taken 2 1/2 hours. I’m on the same sentence in the book-in-progress that I was on several days ago, and I am not kidding. It is not “writer’s block,” so please don’t say, I know how that feels. Unless you have experienced forgetting your formidable vocabulary and fighting against your own brain to retrieve words that you know you know … Then nope. You don’t actually know how it feels.
  • severe anxiety

I guess I didn’t try hard enough, though, huh?

Some of these posts and memes came from people l consider(ed) trusted friends, but once disabled people become their inspiration porn, trust evaporates.

Why?

People with disabilities are not here to inspire able people or make them feel good about themselves. Inspiration porn not only objectifies people with disabilities by turning them into magic talismans, but it erases the very real issues many of us experience–issues for which nobody is offering accommodations, I might add, or for which there might not be an easy solution. I don’t have an “excuse.” I have multiple neurological disabilities (epilepsy, Chiari, PTSD, bipolar) that aren’t “fixable,” and I can’t always get work done, try as I might.

When I have a seizure, I am out, asleep, in bed for days. I can’t find words. I can’t function emotionally. Light hurts. There is literally nothing physically or mentally I can do to make those symptoms go away so I can inspire you all with my incredible achievements. But I guess, you know, I have no “excuse” because someone else out there with another disability overcame and achieved “in spite” of everything.

Inspiration porn operates from several assumptions, the key ones being:

  1. that anytime disabled people do anything “normal” people can do, it’s totally amazing, like our lives are so horrible and difficult and awful that any achievement is a shock (even as the memes or posts fail to acknowledge disability rights and accommodations that would facilitate achievement)
  2.  that all of us could “overcome” if only we tried harder! And if we fail to overcome, well then, it is all our fault. EVEN when some of the reasons we might fail involve able people creating barriers.
  3. exceptionalism as a “standard”: This guy is an inspiration because he’s EXCEPTIONAL, but … he SHOULD BE the “norm.” Which takes us back to #2.

Those assumptions are false taken on their own and wildly nonsensical taken together, which reveals the absurdity and objectification at the heart of inspiration porn.

I was an athlete once. I ran distance track. Want to know what happened when I had a seizure during a race? I recovered, only to find my coach scolding me. “Have some pride,” she said. “Cougars do NOT fall down on the track.” I guess I should have willed that seizure not to happen, huh? Because it’s my job to make able people gawk with amazement and wonder at my incredible athletic prowess in spite of electrical charges taking over my brain!

FUCK THAT.

How many people who post these memes have actually spoken up on behalf of disability rights? Oh, that’s right, I forgot: Inspiration porn is not about helping disabled people; it’s about inspiring able people. Because, you know, able people need so much help in this world, and disabled people are responsible for dishing it up.

How many of the people posting the “What’s your Excuse” bullshit are reading authors with disabilities? Sharing their work? Promoting their work? Clamoring for disabled athletes to get sponsorships? Signing petitions to get more accessibility to events? Standing up for disabled people when they see assholes on social media tearing them down? Oh, they aren’t?

The other fucked-up thing? I am dealing with some difficult shit to write my book, but because my disabilities are not visible, not dramatic in a way that people give a shit about, not “readable” in a cute little meme, not something people want to accommodate at their conferences, not something they even want to hear about, I might not get to publish my book. No, this does not mean I am giving up or that I refuse to overcome. I am speaking here about the bigoted, fucked-up, ableist reality of the lit world and the way inspiration porn perpetuates it.

Agents have actually said things to me like, “I don’t know if you can handle having a book” or “I don’t know if you can promote a book.” They mean because of my epilepsy, bipolar, and PTSD. Probably my Chiari, too, if they ever bothered to learn about it. They typically see me as some kind of magic epileptic “rain man” genius [their word, not mine], which is a form of inspiration porn. And yet! The subtext of what they say to me is: “I am not going to let you ‘overcome’ because you are not overcoming in the way I want you to.” They want me “fixed” in a very specific way, and that’s a big, fat, fucking nope. They wrap it up in paternalism. They want me to think I can’t handle telling my story. In reality, THEY can’t handle me telling my story. They are attracted to it for all the same reasons that terrify them, but they want to maintain this ableist monopoly on “overcoming.”

How many friends have emailed me PRIVATELY to say an essay of mine blew their minds, but then … they don’t share the link on Facebook, even though they typically share links? I guess they don’t want to be associated with that “quirky” way I think, huh? Or they don’t invite me to readings. I have never, not once, been invited to read at any event, and believe me, I know plenty of people in charge of readings. NOT ONCE. I have watched as friends with far fewer publication credits and honors or awards get invited to read, but not me. And what’s the difference? They’re abled. Likewise with academic positions.

Want to guess why I was shut out of writing groups in the past? Take a wild guess … It’s a “pain” to have to provide transportation for me.

Every inspiration porn post makes it THAT much harder for me to operate in the literary world, because now if I have bad days, it’s some kind of “excuse.” And not only that, but because friends have shared examples of disabled people “overcoming,” well, then … There’s no ableism in lit! I am wrong about the barriers and discrimination I face daily. I’m just whining. I am using my disabilities as an “excuse.”

You know what people with disabilities are REALLY “overcoming?” Wanna take a guess? It’s not our bodies. It’s not our screwed-up brain wiring. It’s not pain or wheelchairs or deafness or blindness. We are overcoming able people. The ones who keep us out of your fucking conferences and out of your writing groups and readings and magazines. And that’s a fucking fact.

30 thoughts on “Able friends: I am not your inspiration porn #inspirationporn #disabilities #epilepsy #chiari #ptsd #bipolar

  1. Part of the reason I self published my book on Amazon was this. Sales suck but you know what? I’m too busy hurting to even check the sales. I’m too busy trying to support my family. Even when I post on Facebook the link to my book, I get NO sales and no reposts. No retweets from any of my twitter ads. Not one fucking bit of help. I couldn’t get an agent because, as one or two put it, my work is too “intense”

    Some able people truly suck.

    1. I’m going to go out on a limb and suggest that those people are the same people who offered, “Whatever you need just ask”.

  2. I’ve only self-published 2 chapbooks. I tried my best to go to as many open mics to sell my chapbooks. Nothing. I only sold 1. I did this for a year…finally, I decided to burn my chapbook copies that I made.

    My PSTD kicked in after that…I get flash backs from time to time.

    1. I am so sorry for replying so late! I thought I did before, but I think I only thought it and didn’t post it. I am so sorry this happened with your chapbooks. I would love to read them if I could. Sending you support from afar.

      1. It’s okay. If I make another chapbook by next year, I will let you know.

        P.S I have two poems I posted this past week. I think you’ll like them…and I was feeling sad and you’ll know why when you read them. Please do read them, I promise you will feel what i was feeling.

  3. Are you SURE you’re not just an alcoholic? Because that kind of sounds a lot like alcoholism. (Which is, I am told, a disease, so you can probably still be incensed about other people, I think.)

  4. Although making some valid points, I do feel this is a more personal frustration over being an author rather than speaking for the wider person. Although I’m not invalidating the authors feelings whatsoever however this whole “what’s your excuse” has been said by a deafblind, 74 year old man I work with (I work for a deafblind charity in Scotland) who has just completed a triathlon. I don’t see anything wrong in being inspired or humbled by that.

    1. Except, these issues are carried over to every aspect of my life. Notice I had a seizure on the track, and coach’s response to it? This is not only about “being an author.” By reducing my piece to that tiny sliver, you are, in fact attempting to invalidate my points. It’s what I call “able-splaining.” Finally, people do internalize the messages of the larger culture, so it doesn’t necessarily invalidate the argument if someone else with a disability disagrees. Consider this: Why were you so quick to invalidate my position based on his attitude? Why doesn’t my attitude as a disabled person work in the same way to you? I assert it’s because you have a stake (probably an unconscious) one in maintaining the attitude reflected in “inspiration porn.” You are getting something out of it. Therefore, it’s easy for you to say, “But another person with a disability disagrees with you!” as though that somehow invalidates my points … but it doesn’t work the other way? It’s also entirely possible for people with disabilities to disagree; we are not a monolith. But the fact of the (his) disagreement in no way invalidates my points.

  5. As someone with mostly invisible disabilities I agree so much with you on many of the things you say, however, I do not feel that when people post achievement memes they are perhaps, getting at me, or saying I can do the same as the person in the meme. Rather I believe they are being nice and trying to help, or just completely forgot about my disabilities.

    When the Paralympics were on they didn’t inspire me, I told my Doctor I felt like I don’t perhaps deal with my health problems as well as the athletes. She told me that chronic pain and mental illness can never be compared to say a person who has lost a limb, I now believe that. So no matter what achievement meme I see I never believe it is “aimed” at me, perhaps it is just trying to make me think there is hope…Just how I see this part of life xx

    1. I totally understand that viewpoint, and I don’t think these memes are “aimed” at me, either. Nor do I think people who share them are “bad.” Their intentions are good; I know that. Intentions and consequences are not the same thing, though. As I explained in the post, these memes do have real consequences for inclusion, accommodation, and general attitudes.

    2. Also, thank you so much for your comment about not comparing disabilities. So true! I am glad your doctor is supportive and understands. Sending you virtual support!

  6. Saw this on Everyday Feminism, but it has also been shared on Autism Women’s Network. I’m autistic and I have absolutely been the target of stuff like this. I’m a lawyer. I’ve been through law school. I passed the bar with no accommodations (on my third try). And yet every time I interview, I get the “I’m not sure you can handle a courtroom” trip. (If I don’t disclose my autism, I wind up melting down at stuff like fluorescent lights buzzing or something.)

    I can’t speak for other aspects of the disability rights movement, but the kickass autistic women I know have taken your piece emphatically to heart. We do not live for other people. We live for ourselves and what we can achieve for ourselves, on our terms. My very best to you, and your book amazing. 🙂

    1. YES. I am high-functioning autistic, and you put into words things which I never could express. We MUST live for ourselves rather than others, and I thank you for saying so.

  7. Thank you! I thought for the longest I was the only one who was disturbed at what I call the chronic illness ‘warrior movement’. It is so true – an exceptional example is made into some standard – and if I don’t reach that standard, it’s my fault. Constantly being judged by the world around us: friends, family, neighbors, doctors, specialists, officials…OURSELVES (especially for invisible illness). I am ashamed of how many times I’ve second guessed my own medical issues DURING A FLARE! The warrior, inspirational pronz bs distorts the view not only for the able, but includes the disabled. It is, in no way, a vehicle of healthy thinking. And the worst part – is when those who suffer from your same illness or similar start to judge you based on these warrior ideas. It’s pure garbage.

Comments are closed.