During one of the many interesting conversations I've had in the last few days, the following distinction was drawn to my attention:
The Civil Rights model of change: in which individuals must provoke change through litigation, by example, by setting precedent, generalisable to wider policy only on the occasion of legal proof (bottom up).
The Social Justice model of change: in which members of a society lobby those who represent them at the state or parliamentary level and encourage them to make decisions in the interests of groups of people or the people as a whole, through legislation, without the requirement for individual cases or proofs (top down).
I've had three invitations to go to California. There is a suggestion that I might discover more about the disability rights movement there. Apparently that's where it started. I plan to visit more Clubhouses, and perhaps some of the other facilities here in Virginia, including the military rehab programme. I still have straight-forward programme visits to make in NYC and Ohio. But I'm beginning to think that perhaps there are other things this trip could furnish me with, things that might be as or more important than the brain injury specific visits. I think perhaps I am interested doing some hard thinking, meeting people with radical ideas about disability and society, perhaps even looking at things that might have nothing to do with disability.
It's one thing to say that death is inevitable, that injury is part of existence, that an acceptance of these things is important. But this is not the project of humanity, certainly not in Anglo-American cultures. The project is that of striving towards perfection, towards greater joy and beauty and reason and harmony. Towards immortality. Transcendence. This is what we are doing. And that's why the disabled are side-lined. Along with the elderly, the mad, the ugly, the poor, those with the wrong colour skin. So then what? We strive with our medicine to eradicate sickness, to keep people alive no matter what. But when the results are imperfect we pretend it hasn't happened, block it from our perception, leave it off the balance sheet, cook the books. This is the lot of the permanently injured: to be put aside, left behind despite being required to live. You have to stay alive, but you aren't allowed to exist, participate. You won't be acknowledged. It seems to be a conundrum. It is, for the project, unacceptable that people, whole people of value whom we know as members of the project, should die or be irreparably maimed. That is the point of the project. But this is at odds with reality, counterfactual. Because people do get maimed and people do die. We are left with a choice: either change the rules so that the maimed or otherwise unacceptable can be legitimately disposed of. Or change the project. The former solution has been tried and seems unpalatable, seems to be something a lot of people disagree with. So we are left with changing the project.
New Project
Rather than making it a requirement on members that they strive towards the bar set by consensus, the state of perfection tacitly agreed upon, we say instead that it is right and necessary that all people, regardless of condition or appearance be included in the productions that make that society up. Instead of quietly ignoring those who are imperfect, we confront the fact that they are in fact crucial and inevitable members, that they are, in many cases, the products of our strivance towards perfection, our battle against death, and recognize instead that they have much to offer and that it is unacceptable and wasteful that they not be included. What is required then is a radical redesigning of society, a physical and moral restructuring that takes its motive from the aim of including all persons in all processes to which they can lend their efforts, irrespective of their condition. How about we say that this is the point of society, that this is our project, that this is the perfection towards which we now strive: perfect inclusion. Maximal agency for all, emancipation, acknowledgement of our frailty, a potent valuing of our own and each other’s imperfection.
Perhaps that would be interesting?
Here endeth Chapter One.
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