Rowan's Blog: Disabled lives are not just able-bodied lives lived incorrectly

Disabled lives are not just able-bodied lives lived incorrectly.

Now- before I expand, I do need to acknowledge a few things. I am disabled, I will always be and have always been disabled, even if that wasn’t acknowledged until I was 12. Late diagnosis caused me a great deal of problems, and still affects me today, but it does mean I spent (most of) my younger years without the prejudice that comes with visible and/or early diagnosed disability. Therefore, my perspective has been formed from a place of relative privilege (with other contributing factors to that- I am white, I have a wonderfully supportive family, access to free healthcare and education, etc.).

My view of disability is not representative of every disabled person’s, and is in no way the “correct” one.

Living as a disabled person is difficult. It is frustrating. It is terrifying, at times.

Disability is lifelong and often unpredictable, like your future being determined by the flip of a coin. It’s exhausting, always having to adapt to a world not designed with you in mind, with stairs and cobbled pavement and blaring sounds grating on your ears. Being overlooked and ignored becomes normal, with debilitating symptoms often being written off as exaggerations.

Living at all is difficult, it is frustrating, and it too is terrifying, at times.

Ill health is often taboo, conversations being moved on quickly before it drags the mood down. Speak of it too much and it must be a ploy for attention, speak of it too little and it can’t be there. It’s an exhausting dance to try and maintain a balance that will not get you dismissed or attacked, one that is often futile anyway.

I still find myself trying to justify myself. Trying to compensate for the image already painted in people’s minds when they see me in my wheelchair, or with a walking stick, or rocking back and forth. It is, after all, a defence mechanism built on a life of being othered. But it is tiring, and it leaves you lonely anyway, knowing people never see you, only a performance.

Tomorrow I may wake up in agony. Tomorrow my pain may flare, and I may find myself losing the progress I have made over the past few years.

But no matter what happens, I know I will come out the other end. Still ill, still hurting, still needing support. But I will find a way to be content in that, to live comfortably within myself.

Disability isn’t good, it isn’t bad, it just is. Not because I may “overcome” it, but because I do not have to.

Why should I judge my worth on how well I can hide my disability?

Why should I judge my life on its ability to reflect a standard built on the presumption that everyone is healthy, that everyone is neurotypical, and those who aren’t just have to try harder to pretend they are?

I do not exist to inspire the healthy, nor do I hold any obligation to hide or change myself so they may ignore how fragile health really is.