I get a number of letters asking questions of me, most are from professionals who want advice to help an individual, an uncomfortable number are from students wanting me to write essays for them, but some are for more personal advice. I've excerpted from a letter, with the permission of the writer, here in this blog. It needs to be clear that I only cut the letter in half, the first half was more about my blog and having found it and such. This part of the letter is intact and not altered or edited by me:
I too have been forced to adjust my life, as I have a degenerative muscle disorder in my legs. I'm not in a chair yet, however I will be at one point. I currently walk with two canes and have had to grow used to stares and comments as well.
One thing this has enabled me to do is to have a better understanding of how the people I work with have to learn to cope with everyone around them. No wonder some have "behavioral problems". I do too.
I refuse to get a disabled sticker on my vehicle, much to the chagrin of my family. I don't see myself as disabled, funny how that works. I don't want to get the sticker as then I've got the label. What is your view on this?
Is this just stubborn of me? Or is there in your view a pointless issue that I'm making?
I'm always shy of answering emails that really are about a person's sense of themselves as a human being. I'm not sure I have a right to enter into that discussion, particularly because, as you shall see, I have strong views. But then, I'm invited in, and by courageous permission of the writer, you are too. It seems after two blogs in a row about disability, pride and shame, disability out and proud versus disability lived in whispers, now was the time to publish a comment here.
Firstly, I have to say that when I meet people with obvious disabilities who deny their disability, I find that non-disabled people applaud this with a 'go you' kind of cheer. I don't. I feel immediately kind of insulted. It's like by not wanting to accept the 'status' of disability one gets to keep one's former 'status' as able. This is perceived as a very good thing, holding on to what is valued and rejecting that which is devalued. The number of people with disabilities who eschew membership in the 'disability club' is enormous.
Every time a person with a disability who says, 'I don't consider myself disabled,' they usually have a reason to go along with that - they are fully employed - they are active in sports - they have personal accomplishments. This goes to prove that they aren't 'one of those'. They reinforce two stereotypes, first that disability is so bad that even the disabled don't want to be disabled. And second that disabled people aren't, make the list, employed, athletic, accomplished. They may win approval from their non-disabled friends. I'll bet behind their backs they are described as 'plucky' and 'courageous' and 'inspiring'. Non-disabled people love to be reinforced in their value by the desperate need for membership in their numbers by those who 'poor dear's' don't belong. They love to grant a 'wink wink' membership to us - the others, the lessers.
I also take exception to the idea of 'disability' as a lable. It is no such thing. Disability is. My friend Sheila is not 'labelled' a woman. My friend Ian is not 'labelled' as black. My friend Wendy is not labelled as gay and if you said that to him it would piss him off. We are who we are and we should be who we are proudly. I AM disabled. I AM gay. I AM fat. Those are descriptors of me, not labels placed upon me.
I'm not sure what 'point' that the letter writer is making by not getting a disabled parking badge. But the point probably isn't what he thinks it is. This kind of behaviour perpetuates disability shame, it allows others to view disability as a lesser way to be. Disability pride, however, disability identity in particular, declares simply that disability is another and EQUAL way to be.
Coming out to oneself as a disabled person is a huge step towards self acceptance and a giant step in confronting societies attitudes and prejudices. Adopting a 'yeah, I'm a crip, deal with it or get the fuck out of my way' attitude is hugely beneficial for a successful life as real live living human example of diversity. I know this I am plus sized diversity ... got multiple fronts to face prejudice ... and I warn you it gets tiring.
But no where near as tiring as keeping up pretense. Living a lie is no life to live. This, right now, this time, this body, this way of movement, it's what you got. Well, get it. Take it.
Stevie Wonder in an interview was having trouble getting his point across to an interviewer who just wanted to talk about his music. With every question the interviewer brought up the issue that he was blind. He wasn't in blind denial, he just wanted to talk about and maybe even sell some discs. Finally she asked him what advice he'd give to those who were blind. By now he was frustrated and he blurted out: 'My advice? Be Blind, Just Be Blind, That's What You Are, So ... Be Blind.'
That's brilliant advice.
And that's my advice to you.
'Be disabled. Just Be Disabled. That What You are So ... Be Disabled.'