If you’ve read my blog much or know me in real life, you’ll have gathered that I differ significantly from some platonic template of “Humanity” in a number of socially undervalued / undesirable ways – which is to say that I’m disabled.Humans are all really quite different from each other and we all accept that – but some differences are seen as deficiencies, as problems, as wrongness. Part of the social model of disability is the idea that it was never set in stone which differences would be considered just differences and which would be considered problems. More excitingly, it still isn’t set in stone. Some “problems” can cease to be problems.
My body and my brain deviate from “standard issue” quite a bit. Increasingly, in fact. I have never been and never will be what is currently understood to be “normal”. For the most part, I’m okay with that.
Other people aren’t. They won’t all admit it but a lot of people seem to find people like me – disabled people – pretty disturbing. How do I know this when most other adults won’t straight up call me freak or cripple? I know this by people’s reactions when I talk about my impairments (i.e. the differences about my brain and body that my society considers to be deviations and problems).
When I talk about my autism, dyspraxia and dyslexia, I tend to be fairly upbeat and straightfoward. I like my brain, I’m used to how it works, I am in many ways a master of using it to learn and I know how to turn my differences into advantages. Whilst I wish there’d been more support for me when I was a child, for the most part I enjoy my neurodiverse brain and I get on well with it despite the difficulties I have navigating a world that wasn’t really designed to accommodate people with brains like mine.
When other people hear about my autism, dyslexia and/or dyspraxia, they say things like “I’m so sorry” or “That must be really terrible for you”. They use words like “suffers” to describe my life with my brain and they tell me I’m “really brave” and “an inspiration” for getting a degree. Basically, they treat my life long learning differences as though they are inherently and always a bad thing. They talk over me and instead of listening to how I feel, they end up telling me how they feel and how they think I ought to feel.
They are scared and sad and confused. They don’t want a brain like mine so they imagine I don’t want it either. But I like my brain and it would be scary and sad and confusing for me to contemplate having a brain like theirs instead.
When I talk about my chronic illness and the physical limitations and pain and tiredness that go along with it, I still expect people to agree with me that chronic illness is awful and to be sympathetic. This isn’t usually what actually happens.
When I talk about my chronic illness, I talk about constant wide spread pain, persistent exhaustion, unfulfilling sleep that nontheless takes up 11 or 12 hours of my day. I talk about the sadness of seeing my ability to walk slowly fade away, the fear that words like “incurable” and “progressive” fill me with, the grief of having to contemplate that I will likely never walk without mobility aids again. I talk about not having enough energy to walk to and from the campus shop, of having to cancel plans with friends because I’m in too much pain to get out of bed. Frankly, I talk about how this is my lot in life and G-d seems to be taking the fucking piss by giving me all this to learn to live with.
People nod and look concerned and then tell me I need to exercise more. Or eat more fruit. That a “strapping young man” like me should be off playing football. That I should get out more or see more people. They suggest alternative therapies and guilt-trip me later for not trying them. They suggest the “obvious” healthy living advice (more exercise, better food, positive thinking) as if I wouldn’t have tried that first. They tell me to look on the bright side, they insist without evidence that a cure will be found soon, they outright tell me I could walk fine if I just tried harder. Again, people talk over me but this time it’s to minimise my experience, to make it sound less painful, less awful and more easy to fix. They never tell me I’m still valuable even if I can’t work, they tell me I’ll soon be able to work. They don’t tell me “That sounds really difficult to live with” they just insist that things will get better soon.
When I talk out my mental health problems, people don’t even know what to say.
All I can gather from this, years’ worth of evidence from countless conversations is that people have their own ideas about disability and illness and they’d rather believe them than listen to my actual experience. They’d rather believe that learning difficulties are awful and tragic than accept that I love my brain and they’d rather believe that chronic illnesses are temporary, easily cured and never affect the young than listen and help me with the grief that is forming part of my process of adapting.
I want to end on a positive note so I’d just like to say thank you to everyone who has ever listened to and accepted my own thoughts and feelings about my experiences of my impairments. You’re rarer than you should be and you make me feel like a real and valid person. Thank you.