This is from a comment I made on the ButYouDon’tLookSick’s message boards, and although I think that it is a bit of a sketch and could be expanded upon, I don’t know if I have the energy to do so now. I wanted to put it out to a, um, well, another audience, we’ll say–since “a larger audience” is probably not an accurate description of the relative numbers of readers here and there.
The thread in which I posted this was a short debate on whether disability can or should be seen as “merely” difference and whose interests it serves to look consider a condition that causes one difficulties in functioning in daily life, as it is commonly conceived, as a difference that should be celebrated or a disorder for which we should try to find cures or solutions or accommodations or any of those things with which one might address a disorder.
This is what I said, more or less, with some edits for clarity:
One thing I think that sometimes might be overlooked in the debate over who is disabled and who is different is that disability can be–but perhaps is not always–relative to the culture within which one is disabled. Physical conditions that impair mobility and/or cause pain may seem more universally conceivable as disabilities, but I think there is even a degree to which a certain standard of human mobility has come to be assumed as “normal,” at least in my own culture, and so very few accommodations are granted to those whose mobility does not meet that standard–or not until relatively recently in some parts of the world.
The thing is, to whatever extent disability may be mediated by the culture in which a disabled person resides, it does not somehow magically erase the fact that the person is still disabled in the culture in which s/he is living. So to me, anyway, disability is not an absolute term, with a meaning that can be posited outside of whatever societal system it is that values average abilities to the exclusion of those who do not have average abilities; but it still is disability within a particular context. Changing culturally-determined categories is not an easy task, but for some reason I find that many people assume that if something is culturally mediated, it must somehow be voluntary or easily subverted. But i don’t agree that that is the case.
I consider myself disabled because I cannot do a number of things that adults in my culture are expected to do, and few accommodations are regularly made for people like me. If those accommodations were more generally granted, I might not feel my disability as keenly as I do, but as it is, there are things that adults are expected and even required to do in my culture that I cannot do. And so I don’t have a problem accepting disability benefits, because in my view it is one way in which my culture can compensate for the fact that I, through no moral fault of my own, cannot function optimally in my particular social context. But at the same time, I don’t view my disability as an absolute measure of my potential for leading a full and satisfying life, and I think that a culture is imaginable in which my particular disabilities would be less disabling.
I do, though, sometimes identify as suffering from my disabilities, almost all of which are psychological or neurological, because sometimes they cause me pain and so I do indeed suffer from them. Depression and anxiety are painful; PTSD flashbacks can be completely debilitating. I don’t know if I could imagine a cultural change that could make them completely pain-free, although I can almost imagine conditions under which they might be less painful. My back pain is similar: it hurts like hell when it hurts but it also keeps me from moving about with the agility I once had, and that is something for which accommodations or changes in cultural conditions could compensate. To be concrete, for instance, if the people in San Francisco were willing actually to fund public transportation, I wouldn’t feel compelled to walk everywhere because the buses are dirty and crowded and sometimes dangerous, and so my stiffness and pain would not necessarily hamper my ability to carry on with life. But I’d still feel the pain.
Ultimately, though, I don’t have a lot of patience for people who try to define others’ realities. It seems to me that over and over again I find myself in groups that are disadvantaged in some way or another in our culture and who have felt, acutely, how chafing it is to have someone else define their reality for them, and yet some of them continue to do it to others. This is something that I really don’t understand sometimes.
So that’s what I said there. And now I have said it here. If I hadn’t have just taken a Klonopin because I was feeling anxious about not being “productive” (and let me just critique that cultural imperative someday), I might, ironically enough, have more to add, but beyond emphasizing that I do consider “disability” to be a category that is culturally determined, but that doesn’t mean that disabilities are not, in fact, concretely, disabling–well there is more I could say. Let me see if I can keep myself focused long enough to say it.
Pain is pain. Suffering from pain is suffering from pain, and I think actually that suffering from life itself underwrites our more specific sufferings–and I mean this also very concretely, at the level of physiology even, so that this is not strictly a spiritual or ethical stance. It is a phenomenological one. To state it simply, all you have to do to find out how painful it is to be alive is to become physically dependent upon opiates so that your body stops producing its own endorphins, and then quit taking whatever opiates you have become physically dependent on.
If you do this–and I neither advocate nor refrain from advocating this sort of experiment; if you are the experimental sort, I am not responsible for what you might decide to do–if you do this, you might find out for a few agonizing days what being a body feels like without natural endorphins to keep it from hurting as much as it apparently does. Without our bodies’ own opioid productions, the very processes that keep us alive are excruciating.
That said, suffering is also culturally mediated, down to the point where it is impossible to differentiate between what pain is and what one has learned to do in response to pain according to what one has been taught. The story I told in the paragraph immediately preceding this one is thoroughly infused with a certain Westernish empiricism and with ideas about what is natural and what is not. More consequentially, what we are told about what pain and suffering consist of and what is considered defensible, innocent suffering and what one has “brought on oneself” is constantly shifting in our culture, and so disabilities, which seemingly one should be able to judge objectively, will find little by which to have themselves thus measured, to varying degrees, depending upon where one goes to reckon these things: the doctor’s office, the therapist’s couch, the bureaucrat’s office.
I also think that the conceptions we have of what we should be able to do and what it means to be unable to do those things are very much culturally-derived, but again, if one lives in the culture I live in, I can say with a fair amount of experience to back it up that not being able to do that which “independent” adults are expected to do places one in quandaries of varying depth depending on what aspect of “ability” is in question. Productivity, say (I get to it before I thought I would!): I do not have the breath needed to go into great detail about the Euro-American obsession with productivity, but I will say that it is a cultural obsession and not an absolute value. We inherited it from Calvinism and the Puritans, among other sources, and we obey it compulsively and with little regard for the consequences so long as they are “productive,” or so long as they spur “growth.”
[Insert tangential rant on the difference between “change” and “growth” and the implicit teleology in the latter, a teleology that does not take into account the possibility that growth cannot continue indefinitely within a finite system.]
Taking care that one is engaged every moment in productive activity is related to the meticulous care that some say must be taken to guard one’s thoughts from the temptations of the devil, and that has roots in a distaste for anything that distracts from the Platonic Good. Or vice-versa perhaps. In any case, and to keep from wandering too far afield–which is to say into perversity, the enemy of clear discourse–an absolute value of productivity would be a despotic value, and it just so happens that one aspect of the disability I do suffer from is that I have despots in my head, introjected from years sitting in pews and in the backseat of the car while my parents talked about things they didn’t know were striking me in painful ways while I sat back there, sitting and saying nothing but occasionally cringing and looking ahead to that day I would be able to leave.
Little did I know that there is no leaving. Somewhere, maybe to be in the autobiography that will come together somehow, if I have to lock myself in my room for a year, I have written about the larger, more firmly buttressed sanctuaries one finds as one demolishes, one by one, the sanctuaries that keep one enslaved to particular ideologies. To try to bring this back around to disability, I will stop by saying that any given shrine to ability and productivity is a human construct even when intractable, physiological, psychological and/or neurological conditions make it impossible to continue to make offerings at that shrine. Given especially that it is possible to live with a disability but still meet life creatively, it seems to me that a social theory of disability is indispensable and that, within it, the voices of the disabled may be able to lend greater clarity to an enlarged conception of worthiness and what it is to be creative even if one is not productive in an economic sense.
And that. That is what I needed to say today.