3:23am April 24, 2013

[Photo: On the floor me sitting with an oxygen tube coming out of my nose, and a GJ feeding tube coming out of my stomach/intestines. Behind me are the IV pole with my feeding pump, and behind that the oxygen concentrator is visible mostly as a silhouette. All of this at a very strange camera angle with bad lighting. Two photos, one with the stuff behind me more visible, one with me more visible, otherwise mostly the same.]

It was really, really hard to get any possible way to take a picture of all these things given the iPod touch had to be held in my hand, and the positioning of the objects, and the apartment, and the lighting this time of night. So be glad I could get these three things in the same shot at all. Hence the strange camera angle.

So on to the story:

I’ve had an electronic implant to help me urinate, for years. Just recently, I ended up needing a feeding tube and oxygen. I’m not going into the whole story, as it isn’t relevant.

So my friend, also disabled, came over to visit after I got home from the hospital. Partly to see me. Partly to geek out on my assistive tech.

I commented that I am turning into more and more of a cyborg as time goes on. And that I feel sort of steampunk.

She agreed that all the tubes coming out of me these days (two branches of a feeding tube, one to my stomach to drain stuff out one to my intestines to put stuff in; plus the oxygen tube) seem very steampunk in some way.

Then she discovered that my oxygen concentrator even sounds steampunk. It makes these whirring and hissing noises constantly.

Of course, she doesn’t know the half of it. When you turn on the top half of the oxygen concentrator (used for filling canisters instead of sending air to me through a tube), it makes this intense WHUMP WHUMP WHUMP noise.

Fey, as usual, is taking the technology fine. I’ve found that cats in my life are far less frightened by new technology than dogs are. It may freak them out at first — Fey always hisses at new stuff — but they rarely seem to develop the kind of lasting fear that many dogs do. I don’t know what that says about cats and dogs. Poor Billie Jean, I think if she still lived with me she’d be a permanent nervous wreck. She couldn’t even handle the hospital bed.

Anyway. For some reason I find the cyborg/steampunk aspect of all this hilarious.

And I think many nondisabled people would be horrified by the kind of jokes I and the disabled people I know make about things like this. To them, disability is supposed to be Deadly Serious All The Time. But I have enough serious stuff in my life I need something to laugh at. And I just don’t see disability as out of bounds for humor the way some people do.

Plus I really do see a lot of disabled people as real live cyborgs. I first heard of that when I visited MIT and I love the idea. Because it’s true. Many of us are part flesh part machine. And that’s a really cool thing.

Unfortunately a lot of people who are into science fiction cyborgs would be horrified by this idea. Because they see disabled people as beneath ordinary people. And so the idea that disabled people are enhancing ourselves by becoming cyborgs is totally out of the question to them. The only real enhancements are to people who aren’t already disabled.

And I remember a poem I heard by Connie Panzarino, about how she could kiss, or perform oral sex, without coming up for air, due to her ventilator. And that’s utterly cool. But disabled people aren’t allowed to have utterly cool elements to our assistive tech. That’s reserved for nondisabled people.

People with feeding tubes can eat and talk and move our hands (provided we can talk and move our hands) all at once, and that’s pretty cool too. Without our mouths full at that.

So many sci fi fans can’t stand the idea that disabled cyborgs can have abilities most people don’t have, and not just replace nondisabled people’s abilities. They see our assistive tech as always being an inferior replacement for their own abilities that we lack. And it’s not. Sometimes it gives us abilities they don’t have, whether large or small ones. My feeding tube gives me a kind of freedom I never expected to have. Eating is easier now. Even easier than it is for the average person, aside from some obnoxious side effects. But the actual act of eating is immensely easier. You just plug the tube in, turn on the pump, and forget about it until you run through your bottle of food. It takes longer but it takes no concentration at all. I’m eating at the same time as I am writing this and I am not even thinking about it.

They generally (with a few exceptions) see cyborgs as nondisabled people with mechanical or electrical add-ons that make them have superior abilities to the average nondisabled person.

So they’d argue that we are disabled so it doesn’t count and our add-ons replace standard abilities we lack so it doesn’t count. And a lot of other technical details. None of which are necessarily actually true. What seems to be at the bottom of it is that disabled people are inferior to them and therefore we shouldn’t be going around interfering with their dreams (or nightmares) of a future where ordinary people can have technological superpowers.

Of course you get the bionic woman and Darth Vader and some other exceptions. So we are in there to some extent — usually as disabled people whose assistive tech gives us abilities far beyond the average person. They rarely of course come up with the realities, like being able to eat without thinking or using your mouth or hands. Or being able to kiss or (etc.) indefinitely without coming up for air. Or being able to change our height on a whim. Or other things many disabled people can actually do. Because that would require actually getting to know us.

And when we do end up with a huge advantage, they tend to feel threatened by us rather than the fascination they show for our fictional counterparts. They don’t see it as fair that a disabled person could surpass them through our technology — they’d rather our assistive tech always remain a poor substitute for the abilities they already have. And I don’t know quite why that is but I’m sure again it has to do with us being supposed to be inferior, in the end. Because that’s what most of their uneasiness around real-life cyborgs comes down to.

Wow I didn’t think I’d end up writing something this long. Also — only call someone a cyborg if they’ve given you permission. It can feel dehumanizing to some people and many disabled people would never identify with that word in a million years even if most of their body is kept operating through assistive technology.

But I love to use that word, at least jokingly, on myself. Because it gives a twist to my technology that most people aren’t expecting. They want to see tragedy and ‘cyborg’ suggests enhancement.

It also is more accurate to my feelings about the technology I use. I use, off the top of my head (some full time some part time some rarely at all): An electric wheelchair, a hospital bed, a Hoyer lift, a communication device, a bipap, oxygen concentrator and portable tanks, a feeding tube, a feeding pump, a tube to drain my stomach, a bidet, and an Interstim implant to aid urination.

Some of those make my life easier. Others have literally made the difference between life and death. And all of them I have loved and welcomed. Everyone expects disabled people to see these things as tragic and confining. But many of us see them as tools for freedom and for life itself. And by the time I get them, I’ve long since gotten over any bad feelings about them. By that time, I welcome them as life changing in a near-completely good way.

And that’s why cyborg is a term I like. It suggests something that enhances life and gives you new abilities that you otherwise wouldn’t have. And I especially use it for things that are either inside my body (like the Interstim implant and the tubes) or connected to it for long periods of time (like the oxygen or the bipap). But it’s possible to use it for other things too, depending on how far you stretch the word.

I wish sci fi fans would embrace disabled people as everyday, present-day cyborgs. I also wish they’d embrace our more everyday enhanced abilities — kissing without having to come up for air, and other things you really have to know disabled people well, to figure out. As well as not acting threatened and crying foul when our technology-enhanced abilities greatly surpass theirs in a major area.

None of this is exactly a big thing for disability rights. As in, if all of what I wish, came to pass, it wouldn’t be one of our major achievements. I have no illusions about that. But it would be nice if we were understood and recognized and welcomed into the realm of cyborgs, by the sorts of people normally interested in this stuff. :-)

And I love the idea that all these tubes and noises and stuff seem rather steampunk, even though they’re partially electrical. That’s just cool, however much the era involved would’ve been awful (and deadly) to me in reality.

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