(My blog against disablism, complete with utterly irrelevant pictures of flowers to break up the text).
Many people believe that there is something to be learnt from disabled people. Some people believe that this is why people like me are here – why God allowed me to exist - so that I might teach other people something. About life. About human resilience. About human frailty. And you can see them, sometimes, searching for that lesson; they ask probing questions, they try to make connections. Other people can find the most tedious aspects of your life of tremendous interest.
And then you find that, all of sudden, a lesson has been learnt. People who know you describe situations or conversation where, because they know you they were able to act or speak up in a way that they wouldn't have done without your acquaintance. Sometimes, you are deeply proud of them. Other times, you hear these stories and wonder what on Earth you did wrong.
But then personally, I didn't always teach the right lessons.
The first lesson I taught was about my condition. People want to know, it was new to me and I wanted to explain. I wanted people to know that my needs were legitimate; I hadn't chosen a life of incapacity and dependence - it was all to do with molecules and mitochondria.
Big mistake. Biology has nothing to do with the problems we experience with other people; this was just like a person of colour explaining their genetic lineage, their particular ethnic mix to a white person who wants to know why they are that precise shade of brown. Or a gay person outlining their sexual history to a curious straight, as if sheer detail leads to acceptance.
It is not that those stories should never be told, but there is no responsibility on our part to tell them. People ask what's wrong with us because they don't know any better, just as not so long ago, British black and Asian people would be asked where they came from. The sort of person who asks such a question isn't going to learn very much from a direct answer.
We do not need to justify our difference. Anyone who has an ounce of respect for us, even as strangers, will assume that nobody chooses disadvantage of any variety.
The second lesson I taught was about suffering. Well, I did feel rather sorry for myself. I wanted people to see how well I was taking it, the million things I could no longer do (perhaps only a hundred of which I ever aspired to). At the same time, I thought that resisting assistance, medication or the dreaded wheelchair proved me to be a strong and resilient person.
Big mistake. An acquired impairment almost always encompasses loss, but nobody else is going to understand what you go through. Some won't see the big deal, others will wonder how you can go on living. And disabled people don't have any monopoly on tragedy and loss, not nearly – far worse things can happen to a person than being born or becoming disabled.
We do not need to justify our difference. We don't have to mind any more or less than we actually do. There's no weakness in having an impairment and not being locked in a constant quest for a cure. We have no duty to suffer and no duty to want to change. Sometimes we're better off getting on with our lives.
The third lesson I taught was that I was perfectly normal. I was the same as everyone else, I had the same needs and desires, the same ambitions. I attempted to forego every ounce of eccentricity to make it clear that there was only one difference. I wasn't even going to describe myself as "disabled" because to do so was to mark myself out from the crowd.
Big mistake. I wasn't normal. Never before in my life had I aspired to being normal and this was the worst possible moment to start. It was if I imagined that people would be suspicious. As if, should I reveal myself to be eccentric in any other respect, they might see it all as part of the same package. That my illness was an extension of my weirdo personality.
We do not need to justify our difference. Human beings deviate from one another. There isn't a limit on how many differences a person is allowed to have. I dearly hope that my illness is one of the least interesting things about who I am.
The fourth lesson I taught was that the stereotype was wrong. I wished to defy others expectations of disabled people, to show that I was bright and had an interesting life. I wasn't going to be like what you thought disabled people were like. I was going to be so much better than that.
Big mistake. There is more than one stereotype of the disabled person, and resistance to one can merely play to another. For my part, I couldn't be much less equipped for defying expectations; I really am very inactive and my brain doesn't work.
Of course, my problem wasn't that anyone assumed my brain not to work, it was that people weren't prepared to treat people like that with respect. People with intellectual impairments or mental illness, people who weren't economically-productive members of society. People who weren't sassy or brave or an inspiration to others. I regarded such people as deserving of my respect, so why should I be afraid to be recognised as one of them?
We do not need to justify our difference. We are all worthwhile human beings. We don't owe anyone a good story in order to be treated with respect.
I guess I may have done a lot of damage, but it takes time to learn yourself. And what did I learn?
Well, I know a few things now, but I am not duty-bound to teach. I am not obliged to spend my life answering inappropriate questions or confronting ignorance whenever it arises.
People learn through exposure. We all contribute to this just by living our lives. If a person sees disabled people around them, and if people with invisible impairments are open about their status, then people will see that impairment as part of the human condition and disabled people as equals. Some of us have the capacity to do something about our under-representation in the corridors of power, in the media and in the arts. All this makes a big difference.
People learn through conversation. Conversation is not to be under-estimated as a tool for social change. The model of disability we, the experts, present to our kith and kin effects the conversations that they in turn have with other people and the conversations that those others then have. We have no hope - let alone the responsibility - of explaining all the academic arguments and instilling the best use of language to those who have no interest. But we can influence the stories which are told about us and our experiences.
People learn through our allies. Some of us don't have any kind of voice. Where we are considered something less than human, our testimony is considered unreliable. Non-disabled people need to speak up.
People learn by experience. Every time any challenge is made to behaviour, a failure to comply with the law, a prejudiced news story or systems that hold us back, people pay attention. Some people are slow-learners, but there's no getting round that. Some people are slow-learners about gender, race and sexuality, but our persistence is undoubtedly paying off in these areas. Disability is taking just a little bit longer.
In a seminar recently, discussing the impact of 'full inclusion' in education on disabled students, I asked if we were considering the impact of inclusion v separation on all students. If we don't begin by sharing spaces with each other, the learning you describe doesn't take place.
Great post. As usual, I'll be quoting you.
And thank you for your work on this day. Thank you, Thank you.
Love this post! Thanks so much for this gift of the Day. Sometimes I view my child and myself as Ambassadors, we bring enlightenment to anyone who we interact with. At times though that perspective brings some stress, as though we have to be perfect all of the time- you know.
Many years ago, in the mid-1970s, I knew a brilliant young woman who happened to have cerebral palsy which made her movements somewhat sudden,unpredictable and spasmodic. She was able to walk with crutches.
One day she, I and a group of friends who were campaigning for disability rights gathered to celebrate something and she told this story.
"You know how people always want to know what happened to us? I was in the mall earlier today and these two sweet,old biddies came down the hall and stopped where I was standing. They looked at me, then looked at each other. Finally one of them said,
'You poor dear! Look at you!'
Like I'd never been in front of a mirror!
'You poor dear, what happened?'
Well! I looked her straight in the eye, at least as straigt in the eye as I can, and I said to her,
Lady, what you see is the result of ten years of hard sex!
I thought they were going to faint! Serves them right. They'll never ask anyone THAT question again!"
No. I want to fight. Dammit. (Of course I know you're right but it takes time, you know?)
I didn't sign up, but blogged anyway.
WOW! That is an amazing essay. Beautifully written and eloquent. Thank you!
Have blogged, as promised.
Wonderful and inspiring words. In fact, words that prove just how well your brain does work!
I have been suffering from "an invisible" impairment for some years now; depression, and other mental difficulties, brought on by Post Traumatic Stress Disorder (PTSD).
I'll correct that - I used to suffer and they were impairments. But, with the right help and mental (sic) attitude I turned these into positives.
It is because they are a part of me that I have found a new and worthwhile life ambition: to do my bit to make the web truly universal and to do my best to change peoples' perceptions of the 'myth of disability stereotyping'.
Thank you for making this day possible and so very, very special.
Wonderful post. Excellent.
Great post. And I have to echo what narrator said. We're all living lessons to each other, simply by being together.
Recently, I had to go shopping for a washer/dryer set. Both the sales lady at the store, and one of the delivery guys who brought it over commented on how cheerful I am...
Well, I am a naturally cheerful person, and had a pair of naturally cheerful parents. So I said to each of them: "Yes, well. Thank you."
It wasn't until the other day that it finally dawned on me that they (probably) meant that I was unusually cheerful for someone "in my situation," because they expected someone in a wheelchair to be a bit more glum.
Great posting, Goldfish! I did post for BADD and left two messeges: fulltiltwheelie.blogspot.com/BADD 2009/
I loved the story from Deven Black in your comments today too!
just wanted to let you know that i have NOT forgotten about BADD...i'm working on my post right now...started it yesterday but i'm having trouble concentrating with the whole internet at my disposal...
finished!! this should probably go under "Disability, Culture, and the Media". Enjoy!
Great work as usual.
Thanks for all your time and effort.
Only works in Firefox I'm afraid:
Great post...just found your blog, thru rachelcreative, and enjoying it.
This is a beautiful post, and so well written! My favorite line throughout the entire post is that "We do not need to justify ourselves".
Gentle Hugs... <3
(Commenting on slightly old stuff, I know - slow morning at work!)
A while back in London I passed a woman wearing leg braces and walking with a frame. Her t-shirt said "I break-dance for money" on it.
It made me laugh and think "Hey, that's the t-shirt I'd wear if I had a walking frame" then I realised that was only a revelation because I assumed a gulf between us when I first saw her in the distance.
It would be great if I could translate this post into french, I love it
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