But you look so normal

25 06 2014

There are probably hundreds of blogs with that title on the net today. It’s something many people with an unseen disability have been told. My response is usually ‘I am normal’ , even although my disability is one that highlights how abnormal I am, or how abnormal I should be just to appease society.

It’s no secret that I have autism. The shell looks fine if a little rotund, the inner workings are somewhat wonkily wired. I’ve often joked that to be a convincing autistic I need to rock back and forth and talk incessantly about trains or numbers. People would be more comfortable with me fitting that stereotype, one where I can garner sympathy, but I don’t. I can articulate rather well, I can even successfully take part in small talk and social chat. I have thousands of acquaintances. Socially I do ok. I am a strong independent person, even if I can’t cook. You will never see what’s going on under the surface to get me to that level of interaction. I look just like you. Normal.

You, who can socialise instinctively. Normal. You, who knows the cues to talk or shut up. Normal. You, who pick up on more subtle forms of communication such as body language or facial expression. Normal. You , who is unlikely to struggle with sensory overload or processing basic information. Normal. You, who probably doesn’t become catatonic at the sound of sirens. (There you go Lex Luther, there’s my weakness) Normal.

But you struggle to read me in the same way I struggle to read you and because you are in the majority, it’s expected I will change to fit in with you. In fact, autism is a developmental disability, I am expected to ‘develop’ my skills and understanding to become normal. Some people make a fortune out of trying to get people like me to develop normal skills so I can pretend I am normal to be like you.

Well you know what? I’m really fucking successful at doing normal. Too successful. I have to convince people of my disability. I have to persistently justify my struggles (or symptoms if you prefer such language), even to people who have known me all my life. They say, “but you’re just you, I don’t care what they label you, you’re still the same to me” and in this statement those who claim to accept me refuse to learn about how my brain works, what my struggles are, or how they could help me overcome them. They silence me with their questioning, ‘what is normal anyway?’ Immediately followed by telling me I should try to understand that I’m different and I can’t expect normal people to understand. If this is acceptance then I don’t get it.

And if I struggle to justify how my brain works to those who know me best, what chance have I got of convincing those who don’t know me that I need help and support or understanding? If my disability was visible, if I hadn’t learned not to stim or hide being ‘symptomatic’ (there I go again with that medical language) I don’t think I’d have to justify myself over and over again. I’m definitely not saying those with visible disabilities don’t have problems with justification, hell I’ve read about ATOS and the WCA, but if someone can see the problem they’re more likely to try and understand it. It’s easier to try to imagine mobility issues than it is an entirely different way of processing and thinking. Physical disability is visibly justified, it makes sense to them that there could be difficulties or support needs. When you look just like them and can pretend on the whole to act just like them, when you finally get the courage to say ‘I need help’, you’re met with ‘prove it’ and if I try to prove it, I’m made to feel like a fraud or a con-artist. Only then to be told, ‘prove it more’.

I shouldn’t be made to feel like I’m faking it just because someone else struggles or refuses to understand. Why should I have to fit in with your world? Why can’t you try to fit in with mine? I do look normal. I am normal. Like any normal person I have struggles and sometimes these require me to ask for help. How I appear on the outside shouldn’t define what I need or get.

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