"Label jars not people."
This was said to me recently by someone who has a bumper sticker approach to life.
"Focus on the ability not the disability."
This criticism was leveled at me by someone who thought that I took disability too importantly.
I'm afraid I'm out of step with where our philosophy in service to people with disabilities has taken us. Partly this is because I now have a disability, but partly this has always bothered me. I don't think that 'labeling' people is all that awful. I think the issue is how we value the difference that is labeled. I think that putting difference on a heirarchy is the problem. For me, I don't know how we could have a disability community without the concept, the reality of this thing called disability. I don't think the gay movement even got started until the gay community got over it's own fear of difference ... the 'we're all the same as you' stage. Similarily the women's movement came of age when it began valuing the feminine difference rather than proclaiming masculine equivilancy.
"Don't call me disabled."
Said to me by a self advocate with an intellectual disability who refuses to identify with his disability and his community. His fear of his own difference is his major handicap. He lives a life on the borders on normalicy and even though he has a key to open the door to his own community, he refuses to use it. Doesn't ever, ever, ever want to be seen with someone else with a disability. This to me is profoundly sad. A waste of time, a waste of a life.
Go ahead and sew the label 'disabled' on my forehead. You might as well, the wheelchair gives it away anyways. Don't try to stop me from accessing my disability community, my trolling through the disability blogs, my chatting with other crips when I'm out and about, my reading books and stories about those with disabilities. It's my community, it's my patch of grass, I'm not going to give it up or give it over.
Sure I want access to the whole world, but I want access to my own as well. I'm not interested in the 'I'm not crippled cripples' I find their lack of courage to identify boring and sad. I have always liked people who are in your face. Who are exactly who they are. If you are going to be Christian BE Christian ... not a wishy washy apologist. If you are going to be a philatalist wear stamp ear rings. If you are going to be a Trekkie, learn Klingon.
So, I'm thankful for the label 'disabled', it's given me a movement, it's given me a community and it's given me purpose. Should others try to use that word, that 'label' to take things away, that's where the fight begins ... not with the word but with greedy bigots who want to stuff my rights into their bag. I refuse to bow to pressure to deny my disability in order to prop up the idea that disability is something to be denied. Forget it, I'm too old to spend energy on self delusion for the sake of others.
Disabled ... count me in ... I'm one.
10 comments:
Amen!
So many people for so many different reasons seek out community with those who are "like them". It is not rejection of those are not, just the desire to be in the company of people who share the same reference points in life. It has always troubled me working in the developmental services field that the notion of integration sometimes gets confused with the idea that people with developmental disability shouldn't be allowed to congrate in groups for social activities because that is "segregation"...not if it's a choice it's not! It's community!
Dave,
Until we can view disability as neither good nor bad, just a fact of our humankind, then people will be afraid of these kinds of labels.
That's why we still see mothers move their children away and shush them when they stop and look and ask questions that come very naturally to them.
Wear your disability proudly - its a part of the whole of who you are, no more and no less important than all the other parts of what make you, you.
I was invited into the community of the "disabled" by my amazing daughter, and what a glorious invitation it has been!!
Betsy
Sometimes I feel like you put your fingers right into my brain and give it a stir around--now isn't that a lovely image to start the day with!? :) Ha!
Thinking!
dave thank you for posting this. i think a lot of this mentality came from parents who saw their children having to go through tough stuff since they were "different". if people can turn this "difference" into something to claim and embrace, it becomes a source of power.
You're so right about this. I hate the word disabled as I've tried to explain before, partly because of the negative connotations it carries chosen by others. Like you I see that as the real issue is all of us pulling together as a wide community to show in our difference we are no different than anyone else. Bendy Girl
I think one reason why some people resist the idea of a "disability label" and the "disability community" may be because they mistakenly see it as an either/or choice. Parents of deaf children (especially those who choose to use cochlear implants) will sometimes choose oralism (i.e., prohibit the use of sign) because they somehow see sign as "closing off options." It doesn't. Learning to sign doesn't mean that you can't ALSO learn to speak -- if you have the innate capacity (NOT all deaf people do). Someone who is fluent in both English and ASL is not "losing" options, they're GAINING options. Someone who has the OPTION to join the Deaf community is not necessarily going to "reject" hearing people. In fact, if they have a reasonably loving and supportive hearing family, then you can be pretty darn sure they WON'T. But adding the POSSIBILITY of spending at least SOME of their time in the Deaf community (or disability community generally) IN ADDITION TO the time they spend with hearing/non-disabled people means opening up to a wider range of options.
Ditto for working in deaf or disability oriented organizations. Certainly no disabled person should feel like the ONLY jobs they can work in are in disability-oriented organizations. I'm Deaf/deaf (sometimes I cap it, sometimes not), but I work in an all-hearing environment and that's okay with me. But I still wouldn't want to give up the OPTION of some day working again in a more disability-oriented setting. If you (proverbial "you" not a specific you) tell me that I shouldn't apply to work in the disability field because I would then be segregating myself, then it's YOU who is closing off options to me.
I have never understood the total aversion some people have to "labels". Labels can be such a positive thing. I think how much better I have been able to understand and accept some otherwise perplexing traits in myself, and others, once a label has been applied and suddenly those traits make sense. Yes, labels can be abused. And misapplied. But let's not throw the baby out with the bathwater!
If I forget to take a video back, I'm irresponsible, and lazy. I'm "bad". But when I know I have ADHD, I can laugh and make a second trip to town, knowing that for me, with my label, it's perfectly normal behaviour. And instead of being "irresponsible", I'm actually being "responsible" by making sure it does eventually get done. Big deal if it took two trips. That's who I am... and that's how I like me.
Hurrah thanks for your post. I have a daughter who has had a hard time coping with school and I have been seeking answers for a while. Repeatedly other parents and several paediatricians have criticized me saying why do I want to label my child. I have had to be very strong pursuing my case. The truth is that without the label my child is being given another label "lazy" as I was throughout school too.
She has just been given the labels of hypermobility syndrome and dyspraxia and suddenly she is being helped and people give her some of the breaks she needs when things just are too tough. I am also learning a great deal about myself and why some things were hard for me. It has been a truly positive experience.
The problem is not labels - the problem is prejudice and that holds for the whole of society at every level!
Living with a disability means always living on the edge of possibility..
I love this quotation.."Focus on the ability not the disability." it is what all of us need to do when dealing with each other.
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