The History of Disability

Chuck Grimes cgrimes at tsoft.com
Wed Jul 25 23:46:53 PDT 2001


I should probably stay out of this one, since I know both sides and agree or disagree with them both at different points.

So this is one time, probably not the first or last, that I would strongly advocate complete ignorance is the best policy--ignorance of outcome. Any choices made over abortion, which should include the father but not depend on him (since we are inherently undependable), should be made in an absolutely un-informed condition.

If you want an abortion, then have an abortion. If you don't, then don't. Make those decision without knowing anything about the baby. Because the truth of the matter is you can not know about the baby.

If you decide to carry the baby to term, then part of that decision has to be, something like a vow to cherish in sickness, in health, for better, and poorer. If your baby is disabled, then you simply carry on and see what that means. What that means can not and in principle will not be known in advance. But every life is this kind of gamble, which is the reason to make the vow in the first place. What if he or she, isn't disabled? Is there any better or worse chance that they will be loving and enjoyable, or a constant nagging nightmare; that they will have a happy life or a tragic one? No. This ridiculous need to know in advance is a complete illusion and masks a kind of absurd pretense of control over what is uncontrollable.

Every instance of disability is different, and different across a larger spectrum than any given spectrum of non-disability. So, for example muscular dystrophy can mean anything from a very short life with massive medical interventions, to a very long life and almost no medical intervention. The oldest people I know with MD are in their late forties and early fifties. Any particular, individual life has only crude indicators early on to determine how that life will evolve given the particulars of their initial conditions, and this includes disability where the range of possibility is even greater.

The larger political and ultimately philosophical problem is only evoked by disability and not necessarily an instance of it. This is one of those examples that illustrates why in my mind, disability is inherently radicalizing.

The more comprehensive problem, which the radical difference that disability poses, has to do with the power of the state to regulate all the material and social conditions of life. No formally constituted institution should in principle be given that power. It is an ethical failure on the part of its citizens to allow the state that reach. It is a continuing moral failing that we do not resist and revolt against such power. I feel guilty every night for not having smashed the state that very day. Oh well, perhaps tomorrow.

I am obviously dodging a point blank confrontation here.

Consider the possibility that we can deny the state its presumption. That is, we can also play life by limiting our engagement with the state and institutional medicine, and decide on birthing with a mid-wife or family and friends. This arrangement will automatically weight the outcome on a different set of conditions, since these will at least initially be outside the reach of medical technology and its biases and interventions. Instead, the weight falls on unknown conditions, and us. In the extreme case, this amounts to the ancient Greek tradition of exposure to the elements or the gods. Medieval society would call it fortune. We call it risk. These all have their wisdom and folly.

It is possible (I would advocate it is in fact necessary) to continue to selectively risk, engage, resist, and revolt against the formal institutions of state in each of the major threads of life from birth, childhood, and education, to sex, work and an active life, right on through to dying and death. The state, and its institutions like medicine and capital presume to minister all of these, and I have found, that I prefer to do that ministering myself. Yet, for a very few times, I have actually been part of the state, those times were the most radical of all. So what the state is and what are its presumptions of power, are no more fixed in advance than anything else.

Chuck Grimes



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