2:49am January 14, 2012

➸ Transplantation and [Intellectual Disability]: What Is the Meaning of a Discrimination?

This seems to be a good counter to the anti-transplant arguments that have cropped up in reblogs of my previous post. (I mean, beyond the fact that relatives have offered to donate. Which indicates that people are not even reading the full article, but reacting in a knee-jerk fashion to oppose the girls’ kidney transplant. That says a lot, in my opinion.)

PDF format. The article itself uses the “r-word.”

I made the mistake of reading those so-called arguments. Which read more like rationalizations for naked disablist bigotry. They are vile. They are vile because people read them and believe them and next thing you know one such person will be in charge of deciding when a disabled person gets to live or die. In my reply I’m going to reply even as if the assumptions people are making were possibly true, even when they’re not.

They also – to a one – display a complete lack of understanding about how DD people’s lives work. Really? When our parents aren’t there we don’t get help managing medications? If that were true I’d be dead. I have a huge medication list many of which are necessary to keep me alive. I lack the cognitive skills to maintain any of that. My parents live thousands of miles away and are unable to take care of me anyway. I’m here typing a furious reply rather than rotting in the ground, because I get services from a DD agency which is only one of many options available. If you don’t know what DD services are and look like you shouldn’t make comments like this. If you think that the potential absence of such services means DD people should be denied treatments that involve complicated medication regimens, then you should be helping to build societies that see such assistance as a human right, not arguing in favor of our death by transplant refusal.

This is really fucking personal by the way. Every time I get medical treatment I have to worry not just about all the usual problems. But also about whether some doctor or ethics committee (what a euphemism if there ever was one) will decide that my life isn’t worth saving on the basis of disability. That’s even without needing organ transplants. The ironic thing is that if I ever need an organ transplant in the distant future, it’ll likely be in the same organ that was damaged by doctors who didn’t think I was worth taking care of. And I want to live just as much as anyone else does if not more. I’m not afraid of death but I’m plenty afraid of being killed by doctor or committee long before my time. I love life and want it to continue as long as it can.

I know how bad I look on paper to most people, too. Things like “almost completely bedridden”, “requires tilt-in-space motorized wheelchair”, “severe autism”, “severe chronic pain”, and so forth(*). Not everyone even bothers reading what’s on paper before deciding I have other things too, and sometimes those get written into records. If I ever end up needing a lung transplant, the current system would not give me one. So I take arguments like the ones being made extremely personally.

Meanwhile someone’s talking about the risk of future brain damage. Okay. So on the one hand we have a future that may involve brain damage, or even a future of inevitable brain damage. On the other hand we have no future at all. Yes, being disabled is better than death. But the clincher for me is when this person actually uses the word “vegetable” to refer to a human being. After you use that word, nobody should take anything you say about disability seriously.(**)

Other people talk about how it’s necessary for someone to make these decisions because there aren’t enough organs to go around. That much is true. But there is no reason at all that choosing which people get transplants should have anything to do with disability. What they’re doing is trying to figure out how much value a person can get out of their continued life, by doing some kind of twisted arithmetic. Anyone who thinks it’s possible to put a number value on such things should never be in a position to make such decisions in the first place. And neither should anyone who thinks you can decide such a thing based on a list of diagnoses. When organs are limited, the system of choosing who gets the organs should not involve this kind of calculation. Thinking it’s okay to decide that my life is less valuable than a nondisabled person otherwise like me, is disablist bigotry, plain and simple. You don’t get to pass off the blame to the scarcity of organ donors – it’s not them deciding who their organs go to.

What makes this bigotry obvious to me is the way people in Western societies use it to rationalize dumping disabled people (among many other sorts of people) off cliffs whenever times get hard. Not enough money? Take services, jobs, and government assistance away from disabled people. Want to complain about the excesses of American society? Talk about how some disabled people (especially severely disabled people) get to live (or “be kept alive”) while perfectly good nondisabled people don’t. Pretend that since nondisabled people don’t need certain specific services disabled people do need, then it’s perfectly fair to let disabled people do without those services, even if we die. After all, we have no actual right to be alive, not like nondisabled people do. So remove the services and watch more and more of us kill ourselves and die in the streets. When we kill ourselves for reasons like that, say that this shows our quality of life is inherently lower, and refuse us medical care, including transplants, for that reason. And of course tell everyone how expensive it is to “keep us alive”.

Basically none of these things are remotely ethical things to do. All of them involve using a lack of resources to say “Here, disabled people. YOU DIE FIRST.” Then of course blaming the lack of resources instead of blaming the real culprit: Disablist values that say nondisabled people deserve more of a shot at life. If we were valued equally with nondisabled people it wouldn’t always be disabled people (and other people our societies don’t consider as valuable), especially the least valued kinds of disabled people, being shoved off the cliff and told that our disability is the reason for this.

There is no justification for this so people need to stop rationalizing it out loud and pretending we don’t know what we are talking about.

I spend all of my time around other DD people. And often I forget how people really see us deep down. Other times I’ll look around the room and wonder how we can be who we are and how we see each other, and yet have most people look so far down on us they think they can justify this.

(*) Don’t take me to task for any of these labels, I didn’t come up with them

(**) I’m not as big on seeing lots of words as disablist as some people around here are. But there are some words that are just terrible and have very few legitimate uses. Retard is one of them and vegetable is another. And in case anyone’s wondering, using someone’s potential to become a “vegetable” as an argument in favor of their death is never an acceptable use of the word. In fact it’s practically the best example of how dangerous a word it is to us. Having had this word and similar sentiments used against me, I’m intimately aware of the dangers and refuse to stand by and watch it used without comment.

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