Friday, April 07, 2017

Meaning Matters

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.

5 comments:

kstableford said...

Go Dave!!!

Unknown said...

Pain and fatigue do diminish our thinking brains, and words that usually are withheld pop out. It's human.
Take good care, Dave.
clairesmum

nightengalesknd said...

It is such a non-compliment. When people tell me they don't see me as disabled, that just reinforces the notions that 1) disability is assumed to = "bad" and 2) disability is a medical tragedy, not a cultural and identity marker. After all, no one tells me they don't see me as a woman and mean it as a complement.

But sadly it always seems to be on us to take it rather than respond with the anger these assumptions deserve.

inconquistable said...

Just putting this out there: In college, I went into an extremely male-dominated field. Sometime during my second semester, one of the guys who shared my major, was in several of my classes and who I regularly ate with in the dorms told me he didn't think of me as a girl anymore. I was flabbergasted. He expanded that I wasn't a girl, he knew me, I was "just Beth." After going back and forth a bit to make sure, I gave the guy a good talking to. "Girls" aren't some unified bloc who think, act, and feel the same way or even a small set of different ways. Moreover, I am in no way uniquely entitled to personhood just because they personally know me (outside of dating). Each and every person in his mental category "Girl" is as much an individual and deserving of the same respect as every GUY.

It's another kind of screwed-up thinking that could be behind a comment like that -- one that never occurred to me until the discussion I recounted. The "compliment" toward you might be that they don't think of you as disabled because disabled people are miserable/useless/alone/etc, everything you said. Or they might not think of you as disabled because they think of you as a person and an individual, concepts they don't generally bestow on "the disabled". Or maybe both. None of the options are good, but I think they're distinct.

The line really bothers me when it's from in-group folk denying an identity not because it doesn't fit them but because they consider it shameful. In so doing, they put down the community and further prejudice not only by practicing it but also because they can be held up as an example of a "good" _____ and used to support the idea that said identity is bad or should be erased. Ugh.

AnyBeth

Sherry-Lynn K said...

Someone told me once that they didn't see my son as disabled. My response was something to the effect of that if they could not see that he was disabled, they might want to get their vision checked because he uses a wheelchair for mobility and has a pretty obvious disability. They countered with, "No, I mean, he's so capable and so independent!". My response? "So, people with disabilities aren't capable and independent??? WTH???" They got pretty sheepish and told me they'd never thought about it that way. I'm pretty sure they thought about it after that.