One of the best – and of course, most challenging – aspects of my research is that there isn’t a lot written about pain in disability, or pain at all (especially from outside of medicine). There is some about suffering, but a lot of it is focused on eradication of suffering – and while I’d like people not to suffer, it strikes me as being somewhat like a cure, that denies that people in pain/suffering can live happily as well – just like cures can deny that disabled people can live happily. A cure is a double-edged sword: it ends illness, but it also ends identities. And, much like Susan Wendell, I’m not sure I’d want a cure for myself, because my chronic pain is a part of who I am.
I think the idea of abjection is really important when talking about pain (and percieved suffering – not “I am suffering”, but “you must be suffering”); Imogen Tyler’s Revolting Subjects has really helped my thinking on this. I sometimes wonder how much easier pain would be to live with if it were not constructed in a way that tells us that being in pain is bad; if pain were not abjected, if the person in chronic pain (like other disabled people) were not abject subjects, would it be pain – would it be ok to be in pain?
Pain – particularly chronic pain – is highly gendered and racialised (for example – more women than men have fibromyalgia; it is much harder for a woman, particularly a woman of colour, to get medical treatment for pain than it is for a man); and I think I’ve found some thinking that is helping me pull together abjection, which I see as rooted in ableism, with suffering. Lochlann Jain’s 2007 paper Cancer Butch calls for “an elegiac politics, or a retrieval of affect and death and illness in the context of profit” (p 506). This parallels with the assertion made by Robert McRuer, Allison Kafer, and others, that neoliberal-capitalist society is disabling, not just in terms of how it constructed “good” bodies and “good” subjects, but in how the pursuit of profit above all does violence to the human body, through injury, through disease, through war and pollution and toxicity.
Jain is discussing cancer – another illness not usually included in disability, but one that should be – when she writes of Audre Lorde’s Cancer Journals (1980), “the most notable change since Lorde’s era lies in the rates of a woman’s lifetime risk of breast cancer, up from one in 20 [in the 1970s] to one in seven women [in the 2000s]. A politics of pollution and its violent and violating gendered effects haunts the scars that Lorde wants to recuperate” (2007, p508). This gendered effect – whether cancer or fibromyalgia – is the result of neoliberalism and capitalism on the bodies of women, and yet it is exactly these effects that are abjected, that erase other identities to create the abject subject – the cancer victim, the woman in pain.
This, for me, leads to a three-fold imagining. There is a challenge to ableism, and to neoliberal capitalism, because the root of pain and disableism and suffering is there – on a broad and also a very specific, individual level. This is tied to a challenge to polluting, toxic practices contained within neoliberal capitalist profit-making, as the cause of illness and death. But the third is a challenge to “acknowledge the ugliness of the disease and of the suffering that it causes and to let that suffering be okay, not because it is okay but because this is what we have … a space that allows for the agency and material humanity of suffering and death” (Jain, 2007, p 506). This unpicking of suffering, of what it means to suffer, of what pain and death and illness and impairment means and how it is lived – not just lived with, but lived, with all that living entails, is both the easiest and the most complicated.
This is where my research is going. To make a space to be in pain, to acknowledge pain, but not to dismiss it as negative. To let pain be ok, and not ok, and to live painful lives that are not lesser lives.
Jain, S. Lochlann. “Cancer butch.” Cultural anthropology 22.4 (2007): 501-538.
Kafer, Alison. Feminist, queer, crip. Indiana University Press, 2013.
Lorde, Audre. Cancer Journals. Aunt Lute Books, 1997 .
McRuer, Robert. Crip theory: Cultural signs of queerness and disability. NYU Press, 2006.
Tyler, Imogen. Revolting subjects: Social abjection and resistance in neoliberal Britain. Zed books, 2013.
Wendell, Susan. The rejected body: Feminist philosophical reflections on disability. Psychology Press, 1996.