The Importance of Caregiving Narratives in an Ableist Society

As a caregiver, I know that being able-bodied and neurotypical gives me enormous privilege in our ableist society. I’m also aware that caregiver narratives have access to media, or are picked up by media, much more so than the narratives of persons with disabilities themselves. This is concerning, yet it ought to be remembered that the caregiving narratives that are published or promoted tend to fit societal norms of discourse about persons with disabilities and caregivers: that caregivers are “heroic,” “selfless,” or that they come to recognize difference for “what it is”– otherness, or even that acts of murder, for example, can be excused as stress.
I think it important that in conjunction with the narratives of persons with disabilities, the narratives of caregivers have a chance to broaden in the public imagination and become much more nuanced. My own experiences make me feel much like a conjoined twin with my son–while my able-bodiedness gives me access to things he has no access to, at the same time, I will never have full civil rights and civil liberties until he has them, given the privatization of social services and supports, which is another way of saying that the state can not only shut down the lives of persons with disabilities, but the people who care for them as well, especially those who care for people who are medically fragile. “Care” is a nuanced word when it comes to the State–it means both loving attention and administrative labor as well as physical labor. It does not mean, in my experience, “parenting,” something I wish I had more time for with my child.
Given how broad disability is with regard to the population, I do have concerns that at a venue like AWP, the voices of persons with disabilities who have fewer cognitive disabilities will be privileged at the expense of those who have more communication disabilities, including cognitive disabilities. The writing world is that way among typical populations: privileging “intelligence” when it comes to the evaluation of art (a competitive endeavor that needs metrics). Or that the ableist writing community will impose that sort of metric upon the disability coalition–that the only writing of value produced by persons with disabilities is by those who are “smart.” Personally, given what I’ve observed with a communication-impaired child, human expression is pretty broad and I would like to broaden poetry and literature from its current unqualified acceptance of the beautiful and perfect as the basis of anything acceptable as “art” using the written word–even the most terrible experiences needs be “lyrical” to many editors. This is not the case, for example, when you experience the visual arts.
Anyway, sorry for the length. I have found I’ve had a lot to say where disability and the arts are concerned.
– Jeneva Stone, Contributing Editor to Pentimento
The Importance of Caregiving Narratives in an Ableist Society

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