It Gets Inside Our Heads

Walking the line

Image by Ã. Wind, CC license.

This post by AutistLiam is for Blogging Against Disablism Day 2012. Content notes/trigger warning: mental and physical disability, neuro atypicality, mental and physical ableism. – G.


First of all, I’d like to thank Grace for letting me post here. I’m very grateful and aware that this post is a bit far from the usual topics of her blog. Next, a little about me. My name is Liam and I’m a British student living in the UK. I’m white, which doubtless affects my experiences in ways I haven’t learnt to notice yet. I’m in my early twenties, I’m a trans man, I’m bisexual and I have a BA in Philosophy. Maybe all those facts about me will be pertinent to what I write today, maybe they won’t, but each will have affected my experiences relating to the next fact: I am disabled.

I was born into a world that has never quite known what to do with me; from physiotherapists with no idea what was “wrong” with me, to schools that couldn’t deal with a child who was bright and articulate but unable to read, write, or even draw a triangle, to University lecturers who don’t know how to react to a student saying, “I can either sit still or listen so you’re going to let me fidget in class. Oh, and don’t ask me direct questions cos I can’t always speak”. For me, that’s what disability has often boiled down to – a perpetual unexpectedness. For some strange reason people always expect an abled, neurotypical, mentally “healthy” person with no chronic illnesses and a reliably average IQ score, and when they get me instead they flounder and don’t know what to do.

A lot of disablism (the British word for “ableism” or prejudice against disabled people) comes, I think, from the sadness or anger or fear that disabled people cause by being so unexpected. This is not our fault as disabled people – it hardly seems logical to me that people expect others to be completely abled. No one has the “right” not to have an autistic child or depressed brother or blind partner. No one (not even people in Russia where many think they do) has the “right” to look around themself and see only people who can walk unaided, only people with 46 chromosomes in each cell, only people who look “normal.” Yet people act as though they have that right. Once upon a time in the USA (and probably elsewhere) there were even laws preventing people with disabilities from going out in public because we were considered too “ugly” to be seen. From our sheer unexpectedness comes shock and fear and shame; so of course people try to hide us away or to “normalise” us – often harming us in the process. But then fewer people see us around, get to know us, and learn that we are people too, and the cycle of fear and shame just repeats and repeats and repeats.

But for me, I feel the worst, worst, worst thing about disablism is how it creeps into the minds of disabled people ourselves and is often placed there by those who love us.

I was born functionally blind (but later gained sight after an operation), with hypotonic muscles and with an autistic brain that wouldn’t be recognised for what it was for 19 years. I spent most of my childhood in physiotherapy and occupational therapy for “dyspraxia” (a British term that roughly correlates with Nonverbal Learning Disability) that is now suspected to be unrecognised mild cerebral palsy. My childhood was dominated by extra lessons to help me keep up with my peers – my many learning difficulties making writing my thoughts down close to impossible in a school system where only written thoughts counted.

So, I spent my childhood thinking of myself as stupid because I couldn’t write and because I couldn’t always speak clearly. I still find both writing and speaking difficult but I now know that doesn’t make me stupid – even though many people still treat me like I am. You know that child you’ve seen in a playground, wandering alone, walking “funny” and occasionally stopping to tell someone a fact or a joke in a voice that sounds slightly “strange”? That kid who seems “odd” but you can’t quite work out what it is that’s odd about them? That kid is like me and they probably think they’re stupid. Go and tell them how clever they are.

Only God knows how many years I’ve had mental health problems. Depression, anxiety, eating disorder and now Post-Traumatic Stress Disorder. Do you know what I’d learnt about mental illness from society? That it meant you were selfish, manipulative, and trying to make excuses for how much of a failure you were. I took all of that into myself at a time when I needed self-compassion. I was hurting but all society gave me was more ways to hurt myself. That’s what disablism does.

I read somewhere recently that it takes just four incidences of two things being experienced together to make your brain conclude that they’re linked. How many portrayals of manipulative, selfish depressed people have you seen on TV? How many times have you been told to “Stop being so melodramatic” when you’re crying?

And now, though I’ve learnt to love my autistic brain and found others who love my brain too, I still feel ashamed sometimes because I struggle with things that are supposed to be “easy.” Though I’ve adapted and learnt how to manage a floppy, shaky possibly-CP body (and even learnt to laugh about having learn to walk three times) I still feel ashamed when I ask for help I know I deserve.

And sometime in the last two years, I got chronically ill. I’m suspected to have ME [myalgic encephalomyelitis, also referred to as Chronic Fatigue Syndrome – G]. And so much of what I’ve heard about ME is that people with it are just lazy, that we’re selfish, that it’s not real. And yet it is real and I’m not lazy and I’m not selfish, but that internalised disablism that crept into my mind says otherwise and asks me “Are you sure you’re not making this up?” I’m applying for disability benefits and taking some time off studying because I am too ill, too tired, in too much pain, to read and write about a subject I love dearly – and yet in the back of my mind it’s always there: “Scrounger! Fake! Liar! Cheat!” “You just want to get something for nothing!”

I walk with a stick now. I walked around in constant pain for a year before I got it, insisting almost to the last that I didn’t need one. Why? Because I didn’t want to “give in” because all I’ve ever been told about mobility aids by abled people is how much of a “shame” it is that people have “given up”. I may soon need a wheelchair and I’m being stubborn again because I don’t want to admit that I can’t walk very well.

And that’s what disablism does. It gets inside our heads and makes us scared and ashamed, makes us think we’re selfish and lazy and whispers to us all the lies abled people tell each other to chase away their own fear of becoming like us. And then when they join us, when something happens and they find themselves just as “unexpectable” as we are, they are not prepared because in their minds only selfish, bad, manipulative, lazy scroungers ever give in and admit that they are disabled.

9 Comments

  1. “I was hurting but all society gave me was more ways to hurt myself. That’s what disablism does.” So true. Excellent post!

  2. Thank you for sharing your story! I have had the same experience of being in denial of my own health issues or weaknesses, which began with my doctors growing up who liked to assume my health problems were in my head (or I was making them up to get attention) if they couldn’t immediately pinpoint a cause. We really do have this kind of cultural assumption that everyone should be healthy, able-bodied, and independent, and it’s just not the case. Thanks for being another voice encouraging everyone to ask for help when they need it, and to not assume others are weak or less than just because they aren’t 100% healthy and strong and capable at all times.

  3. Great post. It really is amazing how much people assume that being surrounded by others who are 100% healthy and able is a right … Especially since almost nobody is.

    And I also wonder how this is connected to something I’ve noticed (don’t know if anyone’s done a formal study or not), that even when people experience something, they don’t realize it as true until they hear a story about that same thing happening to other people. …So if the stories we see have no disabled people in them, we come to believe that society has (or should have) no disabled people — even if our uncle is blind, and our grandmother uses a cane, and the neighbor on the corner has arthritis in his wrist…

    Which is why days like B.A.D.D. are so important. Thank you for contributing to it.

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  7. Excellent post….thank you for taking the time to write it and share your thoughts. You’re an excellent writer, by the way, don’t ever doubt yourself on that one.

    This hits home for me, as I am in the midst of raising kids, one of whom is autistic. As a family, we struggle to accept quirks and the unique thinking of our child, while balancing the task of teaching social mores and manners. Which is a tall order for someone who struggles to understand social cues.

    I find, reading the thoughts of adults with autism has helped me to better understand how to love my child for who he is, and not be putting pressure on them to be something they are not. Thanks again…

  8. ‘ …that internalised disablism that crept into my mind says otherwise and asks me “Are you sure you’re not making this up?” I’m applying for disability benefits and taking some time off studying because I am too ill, too tired, in too much pain, to read and write about a subject I love dearly – and yet in the back of my mind it’s always there: “Scrounger! Fake! Liar! Cheat!” ‘

    This. Oh, this. I hate it, and yet can’t make it ever quite go away. And, any time I have to let someone down, the voice in my head becomes their voice. Even though I know they would never say, or probably even *think* such a thing, I can’t get the image out of my mind.

    An excellent post, thank you for putting into words what was in my head. For showing mme that I’m not alone, and reminding me that the lies in my head *are* lies.