i‘M currently writing a paper for a seminar about disability. Actually I’ve currently got four papers on the go – they’re all for presentation, but it’s making my life a tad hectic. This chapter also desperately needs to be finished; I’ve promised myself the end of this month as an absolute, absolute dead end kind of deadline, but we’ll see how it goes. Interestingly, writing a thesis seems to be all about the flexing of deadlines; it’s rather disconcerting!

Anyhow, this seminar has the loosest of titles: something about ‘beyond the social model,’ or ‘in critique of the social model.’ It’s proving a bit difficult to write for: it’s going to be a fairly mixed audience, and I tend toward the theoretical, even for my own discipline. But it’s not just this: my work is on suffering, and suffering, as Wendy Brown has shown, is something that people tend to be pretty invested in, particularly when they’re working in political spheres to remedy the injustices that cause the suffering in the first place. The risk, which would mostly arise from the assumption that I’m much closer to the social model of disability than I actually am, is that I may be uncharitably understood as suggesting that suffering a) doesn’t exist; b) is so utterly contingent as to make the sufferer responsible for their own suffering; or c) that I am equating forms of suffering which are quite clearly very different. I am suggesting none of these things, but suffering playing the role it does, I’m headed into a little anxious about it. So I thought I’d explain a bit of my thoughts on this matter here, and see if practicing writing about these issues might help. Also, my slow upkeep on this blog is making me feel bad, even as I miss it!

The social model of disability can be understood—a little shabbily, but just for now—as what social constructionism did when it came head-to-head with the idea of disability. Just like with the sex/gender distinction that it instituted in relation to feminism, disability was divided into the impairment/disability paradigm. The impairment, it was suggested, is neutral, even natural, whilst society disables those who are impaired. I have a number of issues with this perspective, however much sympathy I have for its intentions, beginning with the problematic conception of the individual subject and what we might loosely call ‘the social,’ and the relationship between them.

The subject in this model is Cartesian; this is one of the key points of social constructionism, and the reason that Moira Gatens could rip the sex/gender distinction to shreds in 1986 (though she likely wasn’t alone, and perhaps wasn’t the first. I just like this book a lot.) It presumes that the body is predominantly, if not entirely, a blank slate. Sure men and women might have different physical sexes, it was suggested; this has nothing at all to do with whether they act feminine or masculine. Similarly, the social model of disability suggests that impairments are neutral but naturally occurring. The issue here, of course, is that it is only in and through the social that we can conceive of two sexes, and only in and through the social that ideas like ‘impaired’ and ‘unimpaired’ make sense. It is, in the end, the social investment in the body—what Judith Butler called the ‘materialisation of’ the body—which produces bodies male, female, intersex, impaired, unimpaired, normal and abnormal. Indeed, as Gatens points out in that 1986 essay, it is ludicrous to suppose that masculinity is socially read in the same way whether it is lived out by a male body or a female body. The body has a significant role to play in the formation of the subject; but it is not in and through providing the biological essence from which the subject will arise, and it is not just in how we understand the body (for that would reinstitute the Cartesian dualism we’re claiming is problematic), but how we experience it.

But there’s something else going on in social constructionism which is somewhat problematic. It presumes that the mind is fully in control. After all, the argument was made by some feminists (note how rare it is to see the phrase ‘some feminists’; most people are all-too-willing to lump the whole diverse bunch in together) that what was needed was education. Education, my friends, would change the world. And I wouldn’t like to say that this is entirely untrue. But the assumption seemed to be that whoever was teaching the next generation could cheerfully shed their belief in the two sexes. This might have been true, but as politically active people have long known (and regularly denied), our wants, needs and desires are not quite so thoroughly within our control. In lots of ways, the assumption that any sexism or racism that existed within a person was entirely conscious has been nothing more than a handy way for those who were aware of the problems to declare themselves free of these terrible prejudices. The most sexism-aware person, male or female, can be misogynist and not even realise it. And as Alcoff showed us, all that time ago, racism occurs not just at the level of intention, but at the level of perception. It lies not in what we plan to do, but in how we see the world. It is not, then, something that we can merely think our way out of. If we were all purely conscious creatures, perhaps social constructionism might get us somewhere. But we’re not. Thank whatever deity you wanna invoke!

If you’ve been reading this blog for a while, you probably know what my take is, by now. The social doesn’t just affect what we can explicitly see, what we consciously think. It affects the every way that we dwell in the world, the very way that we are oriented towards or away from others, the ways we see, breathe, laugh, desire, hurt, smile, sleep, touch, read, speak… We are embodied subjects who are embodied in and through the context in which we live.

What this means is that suffering is much more than we are accustomed to thinking of it as. This is not to deny that bodies hurt. They do. I broke my tooth earlier this year, people, and smooshed my mouth into crazy Angelina-parody lips. I knows da hurt. But the hurt is never, can never be just natural, like we always assume; we make the distinction between pain and suffering as if one were purely physical and the other something more. We need to learn to pay attention to the specificity of our own experiences, and not automatically universalise from them:

This particular devotee is part of a religious procession. He is walking… impaled within what could be described as a type of elaborate metal scaffolding. The infrastructural support for these constructions is the devotee’s own body. Myriad metal spokes are driven into the skin and organs. The hands may also be pierced and even the tongue immobilized by long spikes thrust through the face, lips and neck. To be skewered by any one of these metal prongs would prove at least painful for most of us, and conceivably lethal. Bleeding, scarring, and internal injury would be the inevitable results of what, in a different context, could be read as abuse. Yet for the serious thaipusam devotee, none of these effects is realised. This man does not bleed, nor does he scar. Indeed, whatever the weltanschauung, structural frame, or cultural text – call it what you will – through which this man’s body is ciphered and allocated as “being in the world,” one can only presume that this information also informs the very matter of his body’s material constitution. (Telling Flesh, p. 3)

Vicki Kirby is here describing the Hindu ritual festival of thaipusam. This isn’t science fiction, it’s not a lie, it’s just different to the Western experience of embodiment. It’s telling, though, that it is so very hard for a Western audience to conceive of; indeed, the usual response is disbelief. The assumption that needs to be in place to doubt that veracity of this account is that there is a body that pre-exists the social.

Anyway, the point of this is to demonstrate that pain and suffering are bound up with the way that the body is constituted, with my way of being in the world. Merleau-Ponty says

it has been perceptively remarked that pain and fatigue can never be regarded as causes which ‘act’ upon my liberty, and that, in so far as I may experience either at any given moment, they do not have their origin outside me, but always have a significance and express my attitude to the world. (POP, p. 512)

This ‘attitude to the world’ might sound deeply intentional; but Merleau-Ponty is pretty clear that much of these ways of being comported towards the world are not conscious in the sense we might usually think of them. This means that suffering is always bound up with a whole mass of things about our lives; always bound up with its significance in and to our lives. This significance is produced not just neutrally, but nor is it just as ‘society’ as a whole defines it; rather, it occurs in relation to the unique but nonetheless culturally shaped habitual ways that we are in the world; not just the sometimes ephemeral, hard-to-spot habits of perception, but the very every day ways that we live.

Unsurprisingly, these habits are often informed by normalcy, as it is thought (not just by me), embodied by others and experienced by myself. When I say this, I don’t mean that we wander around thinking we’re normal, normal, normal. Rather, our own personal way of being in the world is built in reflection of the normalcy of our world: I drive a car without problems, can reach all the shelves in the supermarket, can hear conversations without needing to piece together the meaning, read with my eyes and drink a coffee at the same time and so on, and so forth… Yet the interruption of any one of these tiny elements isn’t just the interruption of that strand, but the shaking up of my whole way of being in the world. Some of these we tolerate. They just shake us a little, like almost running into a stobie pole (oops; showing my Adelaideanness there! I was only there for five years, people! ;-)) or perhaps not at all, when I don’t care whether I can hear the conversation or not. But when I suddenly can’t drive my car, can’t walk easily, or swiftly, or at all, or slowly lose my sight…. well, these trouble the entirety of my way of being in the world in ways that I cannot, physically or mentally (as if these two were separated) make sense of. Because they counter my usual ways of making sense. My attunement to the world, and its to me, is demonstrated to be off, out of kilter. And this troubles not just the individual act I’m trying to do, but my whole self, past, present and future. This, my friends, is suffering; and I cannot even get my head around it. All my ways of making meaning are gone. My world as I know it, gone. My self as I know it, gone.

Suffering, then, definitely does exist. It isn’t quite so contingent that we could ever ‘talk ourselves out of it,’ or pretend that ‘education’ as it’s usually conceived of, would be an adequate response. It’s also always different, because every way of being-in-the-world is unique. But what this all means is that the social model of disability never goes far enough: it pretends that the individual subject (not to mention their body) is always removed from society. Culture is bound up, at the most intimate of levels, with who we are, and how we are who we are. This means that even those who are congentially disabled (that is, born with a disability) can experience suffering: they too, through the binding together of syncretic sociability, through the adoption and adaptation of the comportments of others, are likely to embody normalcy. And thus the mismatch of their bodies to their comportments may cause a great deal of suffering; suffering we all too often attribute to the bodies themselves, and seek to fix. We naturalise suffering, make it of-the-body, make it essentially, none of our business, and all of medicine’s. The suffering of those with disabilities, then, will not merely be ‘treated’ by putting in accessible entrances to buildings, or offering TTY services (though these are important steps), as if all disabilities were equivalent anyway. The suffering of those with disabilities is a call to all of us, a call to us to pay attention to how and why and in what ways we embody normalcy, and reinforce it in our worlds. Why is it that this particular, extraordinarily diverse form of physical difference is set aside as something other, something separate, something I need not engage with? Why is this difference one I need not respond to? Perhaps in answering this question, we will return to the question of the gift: if I am given myself by those with disabilities, why the theft of declaring myself normal, declaring myself separate from them? These questions are ethical and political; and they are increasingly urgent as the field of normalcy narrows, and the number of those who suffer their own differences increases.

Forgive the fuzz; I don’t have time to proof-read this properly right now.

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