Things I am learning to say: I’m disabled. I’m chronically ill.
Things I’ve been saying: I’ve got this health condition. I’ve, um, got this thing…
I couldn’t say ‘I have a disability’ for the longest time. First, I’ll address my problematic attitude to the word. I felt it a shameful thing to own, a brand marking my deep and overriding inadequacy. It’s only in the last few months, maybe the last year or so, that I’ve been coming to grips with the fact that being disabled is nothing to be ashamed of, not something good or bad in and of itself, only made bad by society’s hierarchical system. Also, this ‘I’m not disabled!’ attitude has meant I haven’t used services marked as being for people with disabilities, services which could have helped me. It pained me to think that I couldn’t get by on my own. This is partially a reflection of an absurd pride I have in my brain, a pride I have a difficult relationship with and which has been humbled as a result of the barriers I’ve faced. That is, I thought that no matter what happened, I could always get by on my smarts. I think this is also a reflection of Australian society. As will be instantly familiar to any Australians reading this, there’s a pernicious attitude in our culture of respect for “the battler”. That is, anyone who’s struggling to get by and do their best for their family and community is held in great respect. So me with my wussy health condition, needing a bit of help, something to be ashamed of.
Personally, I’m most comfortable with ‘health condition’ and ‘chronically ill’ because I feel they best describe my condition. Also, I like condition because it sounds not so scary and more managable, which is comforting to someone who can’t quite yet see herself as not “one of the normal people”. But to navigate government requirements and the forms of various organizations, I’ve increasingly been lumped in with ‘disability’. This has caused me to confront my relationship with the term. What did disability mean? It meant that those with one or more had certain limits on their capacity to function conventionally. Did this apply to me? Why, yes. I had all sorts of memory and processing and mobility issues which fluctuated in severity. That applied to me.
And then… what was the big deal about this word? I hadn’t done anything wrong and been punished with my condition; there is nothing to be ashamed of in being disabled. And I was different from the world’s idea of a “normal person” in lots of ways. Isn’t that something to be proud of? Don’t I get told that I inspire people to live their lives bigger all the time?
Conceptualising myself as disabled was one of the biggest hurdles. And now I’m largely over it, I can see the beauty of the other side. I’m free in this dark and unexplored space. (It’s like an Ursula Le Guin novel, escaping the dark powers of the tombs, travelling into the land beyond life and sea.) I feel subversive, claiming my identity. There will be no split in my soul. If this is how I live, I embrace my experience. I have travelled to the dark side of the moon and found more of myself.
There is freedom here. I will shout and shout and I will not be silenced, I will SPEAK.