Also at FWD/Forward, s. e. smith talked about the problems of presenting the narratives of disabled people in a discourse that is dominated by the narratives of those who provide care for disabled people -- a narrative that is about the challenges of living with disabled people:
These personal essays are framed as providing insight about living with disability, but really they are about what it is like to be a nondisabled person in a relationship with someone with a disability. Which is certainly a point of view which may be worth hearing at times, except that right now, it’s the dominant narrative. In the media, it’s not that hard to find examples of pieces by nondisabled people writing about living with people with disabilities. It is hard to find writing by disabled people discussing what it’s like to live with nondisabled people, and it’s hard to find people with disabilities writing about themselves and their own experiences.
I wrote about my dislike of the discourse of "(in)visibility" here, drawing largely on what Anna and s. e. smith have written. But I wanted to pick up on another aspect of what they write, and it's the issue of the dominant discourse centering the challenges of disability, a discourse that centers the caregivers but not those who are cared for.
Feminist discourse has, for many years, tried to tackle the issue of caregiving work. The fact that it's hard, it's undervalued or unvalued, it's paid little if anything at all, it's highly gendered and classed and raced, and people who do it are given little structural support, if any. Overwhelmingly, feminist discourse on this topic is focused on childcare, and not care of people who are not children, even though many of the same feminist problems present themselves: the work is highlight gendered, classed, and raced, it's hard and little support is given to those who do it, and it's under-/unvalued, and under-/unpaid.
And if you're caring for a non-disabled little baby, well, that's normal, right? I mean, I don't want to trivialise the extent of "I hate kids" rhetoric, and mother-guilting. But what if the person you're caring for isn't a non-disabled little baby, but a disabled child or adult? Zuska writes about her experiences caring for her mother, and the constant reminders that elder care just isn't valued the way that childcare is, in a post that everyone should read:
Maybe you're watching t.v., and one night, you're just sick to death of all the commercials extolling the virtues of this or that diaper for the cute as a button babies crawling around. You know those babies are going to poop and pee in those diapers and there we are talking about it right on national tv! Because it's cute! And when was the last time you saw a commercial for incontinence briefs? Not so cute. Maybe you get together with your momma-friends and trade info about the best brand of disposable diapers for Junior's comfort, but who do you talk to about how the disposable briefs irritate the equally, if not more so, tender flesh of an older person? We celebrate the time when our children move from the potty-training stage to really and truly using the toilet consistently but nobody talks about how to help someone manage the griefs associated with giving up using your own underwear, or becoming dependent on a bedside toilet chair, or not even being able to reach your bedside toilet chair in time.
In my adulthood, I have been both given and received care. My significant other (henceforth, the Existentialist) and I are both disabled, we both have down days, and sometimes we can both do with some looking after.
Here's what I think: the discourses that implicitly equate "caregiving" with "parenting a small non-disabled child" let us down badly. The discourses that center caregivers and not the cared for let us down badly. They let us down badly even, or perhaps especially, when they are feminist discourses.
Supporting caregivers means supporting all caregivers, not just the ones who are parents of small non-disabled children. Upholding certain kinds of caregiving as more central to feminism itself creates hierarchies of what is or is not "real" work, of the kind that "really matters" or "really" needs support, and ends up marginalising people who desperately need support. Basically, it amounts to buying into the idea that disable people don't matter the way non-disabled babies matter. It also amounts to saying that some kinds of work, disproportionately gendered, raced, and classed, don't really matter.
Which brings me to the second point. There's no way, there's no way, it makes sense to talk about giving and receiving care like they are completely independent issues. This is effectively what we do when we talk about caregiving or caregivers' narratives to the exclusion of the receivers of the same care. These are intimately connected issues.
I modestly propose that we take seriously the issues of caregiving and support for caregivers -- the need for the work of caregiving to be recognised and valued and properly supported. I propose that we also take seriously the difficulties of being dependent on care in a society that discounts such people, that we take seriously the difficulties of explaining disability to non-disabled people, that we take seriously the difficulties of navigating a society that is focused on the needs of non-disabled people.
I'm hoping to write more about this soon.
--IP
[Crossposted at Modus Dopens]
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