Here is a link to the home of the anti-telethon blogswarm today. And I’m late in posting. I’ll leave it up to the other posters to explain the assorted politics of telethon stuff. I do that some years. This year I am not up to the whole explanation in one night, and others are doubtless managing better. But I can discuss the toxic effects of pity.

I got an email recently from someone I haven’t heard from in years, and haven’t seen in over a decade. And talked to them on the phone. And I got all stressed out about it. Not because they pitied me. They showed no sign of doing so that I could detect. But because they potentially could end up doing so, and the potential was strong enough to freak me out in a way other things could not.

When I knew this person before, I experienced my life as a living hell. I mean, few teenagers don’t, regardless of circumstances, but my circumstances weren’t great at the time either. I’ve experienced my life since then as one of growing up, on somewhat of a rockier road than many, and less rocky than some. And I have experienced the changes that have taken place in that time as mostly positive. I have gotten out of situations that would be considered hellish by even adult definitions of the term uncluttered by teenage angst. I am now happy (which I could never have said before the past few years), doing a lot of things I want to do, and using my abilities as well as I can for a whole wide variety of things I care deeply about. I know a lot of non-disabled people who cannot say the same.

But I am well aware of a superficial and ableist take on my life that is very different. In that take on my life, I had made my way into the classification of a gifted child, and experienced a mysterious and horrible regression at a certain age (which everyone then rushed to find scapegoats for). I gradually lost (or in some cases lost merely the appearance of) certain specific motor, comprehension, and speech functions, and for awhile also looked like I was going crazy (which was my own fairly complex response to the chaos that seemed to be going on at the time). And now I use crutches or a wheelchair to get around most places, a keyboard to talk with, staff to help me with daily living stuff (which I was never good at to begin with but it doesn’t show as much in a child as when the child gets older and still hasn’t learned it), etc. I have a number of fairly complex health problems. I don’t get out much. Have experienced a continuing drop in tested IQ. Etc.

These changes have just happened, most of them gradually, over time. By this point very little about them alarms me, or I would spend all my time being alarmed, which would not be all that useful. I have a life and I live that life in the body I’ve got with the mind I’ve got, and I spend more energy than most non-disabled people I know on trying to do so as efficiently and practically as I can.

But how to convey that to someone for whom the change has not been gradually observable over time, and thus looks pretty drastic? How to make sure that pity is not the response I get? How to avoid the slap in the face of hearing the version of my life based more on imaginary stereotypes than anything real, put forth as reality? How to convey what the actual reality is? I don’t know. Fortunately it has not come up, the person in question has not responded in a way that would make it have to. But it was a real possibility, and a possibility that I feared. Pity is seen as the default response to a situation like mine. Many people don’t see that I have a life, and that this life is not divorced from my body, nor married to their preconceptions of what life in a body like mine must be like, but just going on like everyone else’s life in many ways, just a very different shape in some respects. I am glad the person who contacted me out of nowhere has not treated me like this, but it’s the fear of this reaction that has kept me out of contact with a lot of people from my childhood.

Dave Hingsburger talked about public displays of people for money making him (literally) puke. I am not likely to actually puke, but what nauseates me is the way people’s lives are written off after we cross some mysterious boundary line between “abled” and “disabled”. Mind you, I have been autistic since I was born (probably since beforehand), and a number of other things besides, but I was passed (I will not say “I passed”, that gives me too much agency and say in the matter) for awhile in certain ways and in certain contexts. When that became no longer possible for a number of reasons (again, some in me, some in my environment’s demands of me), I crossed some kind of line past which the response of most people is pity.

I have heard and read many accounts of Syd Barrett, the former member of Pink Floyd who is said to have brain damage from LSD (similar to a false rumor that was started about me at one point, so I won’t comment on the truth or falsity in his case, because I know that in my case substance abuse was a sign that I was in the middle of some kind of stress-based collapse, not a cause of the collapse, and I don’t want to speculate too far one way or the other about a stranger). Whatever the reason, he crossed some line into what they considered too much craziness and was kicked out of the band.

Everything I hear about him past that point is laced in pity. From what I heard he had a life from then on, but the people who were formerly in his life could barely stand to see him without breaking out in great gushes of pity. Some of them reportedly attempted to avoid him because they felt so sorry for him — that sounds like ‘pity’ was part of something closer to revulsion and hate. And from what I heard, he couldn’t stand the songs they were writing about him when he did finally meet him again. I am not inside his head, but perhaps he hated the pity that ran through them, the sense that who he was as a real person had ceased to exist, that they thought his life was already in a sense gone, that he was half-dead to them. That’s why I hate certain kinds of pity, at any rate. It’s a form of metaphorically killing the person I am now by claiming that the best of me is already gone. I identify a lot with what I’ve heard of him, not because of the larger-than-life mythology that’s cropped up around him, but because he had to navigate around that mythology, and the resultant pity and lurid fascination, for the rest of his life, more even than most disabled people do (because he was famous), while living what was probably to him a perfectly good life or at least a perfectly ordinary everyday one, that did not end the moment he left Pink Floyd.

I mean, think about it, if you were living what you thought was a very interesting life, would you really want this song written about you (lyrics here since there’s no captions)?

I’ve heard it said that he didn’t want to be reminded of what he lost, and I’ve very occasionally heard similar things said about me. I don’t know about him, he’s a total stranger to me. But personally, I am not bothered by the possibility of confronting what I have supposedly lost. My childhood, even, perhaps especially, at my so-called “highest functioning” (by someone else’s standards), was very unpleasant and it’s that unpleasantness that lingers in my memory as something I’d rather not experience again. I’ve gotten away from that, and I certainly don’t experience it as a tragic loss, but more of a pit I managed to climb out of. What bothers me is that some people see my childhood as the highlight of my life, because some of it in some circumstances was the time I most exceeded what was expected of me in a very superficial sense. It bothers me for what has been a difficult but rewarding life to be summed up as a tragedy, a life that ended halfway through. There’s little more eerie and dehumanizing as being treated as the walking dead, or being held up to a ghost that you were never going to be and found wanting, all for superficial reasons. And I’ve experienced it not only from people who knew me prior to whatever sociological shift I underwent, but also from professionals in general.

Jerry Lewis has said similar things about people who use wheelchairs, and has even said once we’re in a chair we’re only half of a person. At least he is blatant about his bigotry. But he obviously has never had to use one when he really needed one. I can remember how immobile I got before I finally decided once and for all to begin using a wheelchair part-time. And I remember the freedom and mobility it’s allowed for in my life. It does not diminish my life, it enhances it. But even close family members could not see that at first, because wheelchairs are so emblematic of a diminished and pitiful existence. (For an essay that changed my view of the things drastically, try I Want To Live, Give Me The Chair.)

So whether one acquires something, or something progresses, or circumstances change to make something stand out more, the reaction a lot of people have is the poisonous reaction of pity. Telethons only add to that. They say our lives are over, sometimes before they have even started. And we defy them by living our lives as the complex and growing people that we are, regardless of how various aspects of us are medicalized, and regardless of how those aspects of us appear or change over time. We are not the walking dead, we are not half-persons, we are quite alive, and the everydayness of our reality outshines all the tragic melodrama others want to drape over us, and the ‘normal’ ghosts they would compare us to. And people would notice that if they only they stopped looking at the glossy telethon versions of our lives.