(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.