Guest Post: To Whom It May Concern

Avendya is a college student with a chronic illness.

To Whom It May Concern:

My life is not a fucking tragedy.

No, really. Yes, I’ve fought with GlaxoSmithKline today, and I’m not sure when I’ll get a medication I badly need. Yes, my knee keeps giving out, and I am barely able to keep up the stairs to my room. Yes, I’ve broken so many times in the last week I’ve last count. No, I’m not sure that I’m really well enough to manage my workload. But you know what? I’m sitting in a computer lab with my best friend, listening to trashy German pop music, and Nadia made me brownies.

These are the stories I want to hear about: not just the tragedy of suffering, not just pity and playing on able-bodied people’s fears, but my life – our lives. I want to see a fictional character who has mobility issues who isn’t a tragic figure, but is clever and beautiful and could probably kick your ass without breaking a sweat. I want to see a story where the love interest isn’t a nice (white) girl, but a woman who’s gone through hell, and is stronger for it. I want to hear stories of disabled men and women succeeding – and not “in spite of” their disability.

I choose to define my life on my terms – not just the bad days, the panic attacks, the times when no pain medication I try even cuts into the pain, but the days where I say “screw it” and explore cities on my own, take in the breeze off the Bay, buy more books than I should, and listen to Imogen Heap as loud as my iPod will go. I may have not chosen my illness, but I damn well chose the rest of my life. I don’t much care if it isn’t what you were expecting from a disabled person – this is my life, my future, and I am not your fucking cliche.

I want to see, hear, read about people like me, living their lives on their own terms. We’re not martyrs and we’re not saints – we are people. More than that, we are – we exist, and no matter how many times our needs are disregarded, our stories are erased, we refuse to let you define us.

15 Comments

  1. Your life is tragic – trashy German pop music? Pssh, Bollywood music is what PWD listen to. It’s, like, in the handbook.
    .-= Kaitlyn´s last blog ..Spoon Theory and Me (It’s all about me) =-.

  2. Amen.

    You may enjoy a novel called Gridlock, by Brit comedian Ben Elton, the protagonists are an engineer with fairly severe cerebral paulsy (bit of a stereotype), and a paraplegic woman who discover a plot to cover up the engineer’s invention of a workable hydrogen engine. I can’t find it on amazon, but you migth be able to find it second hand. I’m currently able bodied, but I remember when I read it I found it refreshing to see a book where two disabled people were treated like real fully rounded characters, with some interesting (to me) though provocation about the crap they have to face day to day.
    .-= Rosemary Riveter´s last blog ..Ex-Pat =-.

  3. I can’t help but agree. My life is not all doom and gloom and I also don’t want to be somebody’s inspiration. I’m just me.
    .-= thetroubleis´s last blog ..What It Is To Be A Monster =-.

  4. thetroubles – I’ll only be someone’s inspiration for a speaking fee with 4-5 figures. Inspiration doesn’t come cheap.
    .-= Kaitlyn´s last blog ..Spoon Theory and Me (It’s all about me) =-.

  5. I think we should start telling people that. It seems it would be lucrative.
    .-= thetroubleis´s last blog ..What It Is To Be A Monster =-.

  6. The amount of times I’ve heard “despite” or “in spite of” in that context! Just last night I was at a conference, and on a video we were shown a mother was saying “This is the story of how he became such a wonderful little boy despite his difficulties” (check out recent post for more on that… though it’s not really about that video per se…)

    Actually, my most profound moment at recognising disabled people as whole came when I was 12/13 and my little brother was diagnosed with Asperger’s. My mum was showing me a leaflet about it, and explaining why he had been given the diagnosis. She was showing me which behaviours matched his.
    I said, “So it’s all because of his Asperger’s? I thought it was just him.”
    She replied, “It is just him. Asperger’s is part of him, and helped make him who he is.”

    I’m probably not relating the story well, my memories of that time are fuzzy, but her basic premise was this isn’t a horrible condition taking away my brother, it’s just my brother’s way of thinking given a name.

    “I am not your fucking cliche.” and “I’ll only be someone’s inspiration for a speaking fee with 4-5 figures. Inspiration doesn’t come cheap.” need to be made into T-shirts (with the second phrase possibly shortened somehow).
    .-= PharaohKatt´s last blog ..Positive Experiences with Disability Activism =-.

  7. The sad thing is, parents of children with disabilities do get speaking fees to come to universities and tell their “inspiring” story.

  8. And a certain gentleman (Karl Taro Greenfield) wrote a memoir, Boy Alone, about growing up with a younger brother who had an autism spectrum disorder. I haven’t read the book, so I can’t speak to it directly, but I heard him being interviewed on NPR (I think it was Fresh Air) and it was pretty awful. He’d done this unique, courageous thing and put truth to paper, which is that having a sibling with autism sucks. That bastard stole his family! Hence the title.

    True, it wasn’t your usual heartwarming “My disabled sibling’s existence taught me how to shit unicorn-flavored rainbows!” story, but resenting the disabled ain’t exactly new either.

  9. Oh god THIS!

    I am not your inspiration. I’m just me. Why the heck can’t people see that?

  10. Can I just say, HELL YES. The minute someone is a seen as a tragedy, or a cliche, or an inspirational figure, no one’s looking at them as a PERSON any more, and that shouldn’t happen to anyone.

  11. I love this. I have it bookmarked so I can come back and keep reading it again.