My disability has meaning.
My disability matters.
I just had someone say to me that they ‘don’t think of me as being disabled.’ I’m afraid I rather lost it on them. Sadly, I was a bit incoherent in my response because the statement upset me so very much. You see, like many people with disabilities, I’m fairly skilled at being disabled. I know how to exist in this world. I know how to adapt to the environments I’m in. I know how to make difficult things easier. I know when I need help, I know when I don’t. I’m the expert in my own disability, my own body and my own adaptations.
I get that, because of that, someone may see me getting along just fine in the world. I get that they would translate that into the ‘I don’t see you as disabled’ compliment. It’s not a compliment, of course, it’s a veiled insult. Disability is the opposite of competence. Disability is the opposite of getting alone. Disability is the opposite of accomplishment. Even so, I shouldn’t have told him to ‘shut up.’ And I shouldn’t have told him that so loudly.
At the moment that the non-compliment was given, I was exhausted from having a difficult night with the pain which I experience as a result of my disability. I spent much of my night moving from one to another to another of the positions which I can sleep in, each beginning with a relief of pain and each slowly waking me with its return. At the moment of that non-compliment I had just pushed myself up a steep hill, which I do normally, but today it was snow covered and I was having to use a pushing technique that I can do but that I find difficult. My coping, my adapting, my endurance was erased by that statement. Even so, I probably shouldn’t have dropped the ‘f bomb’ several times during my response.
When they say that I have ‘the lived experience of having a disability,’ they are right. However, when that ‘lived experience’ is one that becomes invisible as I learn more every day about what I can and can’t do and what adaptions work in what situations and how to orient my body in my chair in order to do what I want to do, people assume that the ‘lived experience’ isn’t really all that different than the ‘lived experience’ of those who walk and those who move through air as if it has no weight. At the moment that I was granted non-disabled status, I was feeling my disability in a very real way. It held meaning for me, and that meaning mattered. The dismissal and erasure of that experience angered me. Even so, I probably shouldn’t have used both ‘ablist’ and ‘asshole’ so closely together in a sentence.
I suppose I have an apology to give.
But what troubles me, is that I’m sure an apology is expected. I’m sure he feels the innocent victim of my anger. I’m sure he sees himself as the one who gave a compliment and me as the one who lost a wee bit of control. So I will apologize, but for how I said what I said, but not for what I said.
Because.
Disability matters.
And.
It means something.
