Since the explosion of controversy over at The Mighty, in a lot of disability related writing there has been a spotlight on parent caregivers of disabled children who write about their experiences. I have been reading various articles and posts in an attempt to better understand how parents who write are accused of speaking from a position of able bodied privilege and, as such, use ableist language.
I admit to struggling with the concept of privilege. I am not solid in my understanding be it "white privilege", or "male privilege" or "able-bodied privilege". If you take privilege as a concept all the way to--well, all the way…it seems that everyone, in some way, has privilege and as such, everyone, in some way has bias based on that privilege and language that potentially offends those not similarly privileged. I suspect that I am tripping up on the word “privilege” itself. I understand it better in terms of imbalance of power, where the people or group with more power sets the language to be used for all. I get where that is problematic.
What I do know is that it is taboo to mention severity of disability as a modifying factor in disability related discussions. In this scenario, if you are the parent of an individual with severe, combined physical and intellectual disabilities, your child has no voice, quite literally and you, by virtue of being abled bodied, belong to a privileged group. You are both, therefore, silenced by the reigning establishment of disability experts, writers and self-advocates. This is the message. It’s quite clear.
This second category of parents like to used [sic] some tired excuses: “My child does not have a voice, so I can and must speak for them” – to which I say: everyone has a voice and your job is to help your child use theirs. Meanwhile you need to stop talking publicly about your child’s disability and do some real parenting.
“You (disabled adults) are not like my (‘low-functioning’) child” – to which I remind them that a developmental disability has its own timeline. Many of us learned skills, and language, later than typically developing people. Don’t use this excuse to justify your need for attention. Your attitude only shows that you don’t believe in your child.
I wouldn’t bother posting any of this were it not for the fact that Sequenzia is actually quoted by other disability writers and has a voice in a broader public arena. Her rant is nothing but, though it is representative of the supreme ignorance of the vocal and articulate self-advocates surrounding all things related to severe disability. You ask me to check my privilege but you don't check your own. If you are able to get to your computer, formulate an argument, lay it out and get it posted, then field comments about it, that is your position of power. My daughter and those like her cannot express themselves enough to be heard. It's not a matter of time or a matter of my faith in her. She is brain damaged, intellectually impaired to the degree that it is not possible for her to express much of anything. For some reason, too many disability advocates cannot accept this reality, or actively choose to ignore it. Perhaps it challenges their privilege too much. Are they unable to accept that, among the group that can call themselves disabled are those whose bodies and brains are broken beyond the ability to do something or to self-express? Is it possible that you hate being on the metaphorical short bus, not because you are being marginalized, as you like to say, but because you might be identified with my supremely physically and mentally challenged child? Or is it the thought (the irony?) of some people with disabilities having to be completely dependent upon a non-disabled other to survive that pisses you off? Offended yet? Now you know how notions like Sequenzia's feel to us parents of kids or adults with severe disabilities.
From where, then, will the voice of the severely disabled come? There is only one answer: from the parents. What we cannot abide is the co-opting of disability language by disability writers and thinkers who refuse to acknowledge the existence of individuals severely, multiply disabled and their unique relationship with their dedicated caregivers. I don't believe nor will I accept that persons with disabilities have a monopoly on the experience of disability; they cannot dismiss my experience of it, through my daughter's life, as being invalid. It’s the flipside of ableism!
It’s time to end a one way conversation that insists it’s only the parents of kids with disabilities that have something to learn. If you are a genuine activist in the disability field, it’s a two way street. Parents will not be patronized in this way, or stand to be categorized as ableist. We have a lot to say and a lot of deep understanding that can broaden everyone’s perspectives on the nature and experience of living with disability. This must be the other side of the discussion that stemmed from The Mighty.