marjaerwin

Right now, I'm dealing with chronic pain, chronic headaches, various health issues, and very nasty sensory issues.

I am autistic and have always had sensory differences. Unfortunately, I don't have any common frame of reference to identify all the sensory differences. I do know I already had trouble with flashing/strobing lights, I would get headaches from flourescent lights, etc. but I was able to walk around without shielding my eyes, I was able to listen to music, etc. I do know I also had trouble with certain types of coordination.

I have been suffering chronic health issues and have also had severe sensory amplification, especially over the past three years. I have a diagnosis of hyperacusis, nothing for my other sensory issues, and no diagnosis of the underlying condition.

I get beaten up, by sensory bombardment, almost every day, and often several times in one day. I was beaten up at 6:55 am today. I am particularly sensitive to beeping sounds, and am often incapacitated by the shear pain from backup beepers. I wear earplugs and ear protectors when running errands. I keep ear protectors within arm's reach when at home, and I have set up sound-blocking foam in one closet as a refuge.

I have a lot of trouble accessing health care due to my disabilities and every place's lack of accessibility.

I once arrived at a community health clinic to see my doctor about hormones, I signed in, I curled up in pain in the waiting room, I waited in pain, and I finally asked what was going on - they had quietly signed me out, and they told me I hadn't signed in and had missed my appointment while I was waiting, in obvious pain, for my appointment.

I have had more trouble as my worsening sensory issues make it impossible to take the buses and trains, impossible to use the phones, and often impossible to handle the sensory bombardment in waiting areas, with elevator chimes, phones ringing, tvs flashing and blaring, etc. I haven't been able to follow up on referrals, because I can neither schedule appointments nor go to appointments unless my sensory symptoms are in remission.

I’ve been thinking about how my experiences with disabilities have shaped my perception of anarchism.

Throughout western culture, there’s the tension between the idea that our value is innate in our humanity, and the idea that our value is dependent on our utility to others. But utility doesn’t exist in itself, it exists in its time and place and for people, and it exists in this whole complex social system. Someone who holds a key bottleneck in the social system [such as a key patent, or a telecom monopoly], can open it, can close it, can extract payment for it [even if it is only force that creates the bottleneck or keeps others from creating alternatives and working around the bottleneck]. In fact, they may contribute utility from a neoliberal perspective, for opening the bottleneck when paid, and disutility from an anarchist perspective, for creating the damn bottleneck and demanding payment. Someone who holds no such position in the social system cannot. Someone who society has enabled is more able to do good or ill. Someone who society has disabled is less able to.

It is important to understand that disability is not purely medical, it is also social. Our societies systematically enable certain people, with certain conditions, and disable other people, with other conditions. I think some disabilities are almost entirely medical problems, for example, my having asthma poses medical problems, and secondarily social problems such as how to avoid allergies; by way of contrast, my being autistic poses social problems, such as how to avoid strobing lights, eye contact, and high-pitched beeps, without posing medical problems.

If our society normalizes demands for eye contact, normalizes the use of stairs instead of ramps, and so on, it has the effect of enabling some people while disabling others. It allows some people to create more utility and allows other people to create less, and then uses the difference to justify favoring some people while marginalizing others. If our society demands bright lighting everywhere, that helps people with certain visual conditions, and hurts people with other visual conditions, if it demands flashing lights as safety features, it allows some people to avoid the lights and incapacitates other people with these lights.

For all these reasons, I cannot trust any economic system which embodies ‘to each according to their work,’ because we are not given the same opportunity to usefully work. But at the same time, I cannot trust any economic system which embodies ‘from each according to their ability, to each according to their needs,’ because I cannot trust anyone else to understand my abilities and disabilities or to understand my needs. I am ultimately the expert on my own experience, even if others may be better experts on my medical issues. And if an anarcho-communist community were to allow me to take whatever I needed from communal services, I have no guarantee that the services would be accessible or my needs would be available there. In fact there might be political objections to my treatment for my endocrine conditions, as well as practical problems finding ear protectors, a quiet computer, or other unusual specialized requirements. I would need to obtain these things through mutual exchange.

It would seem that neither communism on its own, nor exchange, on its own, fully includes those of us with disabilities. I have to ask anarchists and other leftists and other libertarians how they propose to solve this problem.

I believe that society as a whole has an obligation to include everyone, and certain community institutions will have an obligation to include everyone. I suppose a basic income might be a first answer, both as a means of including everyone, and as a means of compensation for excluding anyone. In effect, just as geoism proposes to compensate those excluded from land, this would compensate those excluded from social institutions, and also help counter exclusion. But this would pose its own problems. Who would administer it? Why would they be any more responsible to those society has disabled than all the other institutions have? or any less corruptible by those society has most enabled? I do not think it is the best answer. (a)

Further Credit: [I think] I first encountered the social model of disability, referred to and extensively used above, at a workshop by AndreaA Newman Mascis [my notes are mixed up, and I initially confused this with another workshop]. I suggest that people interested in sensory sensitivities look at the work of Sharon Heller and/or Olga Bogdashina.

previously posted on tumblr: http://ananiujitha.tumblr.com/post/76767631583/disability-and-anarchism

(a) I have rewritten this paragraph. An earlier version read: A basic income, since the land belongs to all, and the benefits society provides to those it enables could arguably belong to all, and especially to those it disables, might be a first answer, but it poses its own problems. Who would administer it? Why would they be any more responsible to those society has disabled than all the other institutions have? or any less corruptible by those society has most enabled? I do not think it is the best answer.

It's hard. Some beatings, some stuff I'd rather not talk about, a death in the family, and frequent reminders that I don't control my own life have sucked all the joy out of my own life.

P.S. I've had good days and bad in the past three weeks. I'm triggered now, but on the whole I'm doing better these days than I was then. I've got a better idea too, of what keeps bringing me back to the beatings, and the other stuff I've survived, and the fear. Maybe I can work through it after all. Maybe it will start getting better instead of worse.