There seems to be a bit of a theme these days of nondisabled people writing about the disabled people in their lives for the mainstream media. We had Sue Blackmore writing about her daughter Emily, who has anorexia, and Anne Miller writing about her husband, Michael Davoli, for example, and I’m sure there were countless other instances in the news in the last week or so, it’s just that these two jumped out at me.
This is a consistent and troubling theme in media discussions about disability. Anna touched upon this in ‘Making ‘Invisible Women’ even more invisible‘ recently as well, discussing an opinion editorial written for international women’s day by a nondisabled man talking about women with disabilities.
For nondisabled readers, I’m sure it’s very comforting to read about disability from the perspective of other nondisabled people. It’s a familiar zone. Common ground. But for readers with disabilities, it’s a repeat of the tired old story we’ve been hearing for years; people talk about us but they do not talk with us and we are not allowed to have our own voices.
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.
In fact, it’s rather dehumanizing to reduce people to their disabilities, which is basically what these articles do. These articles are a reminder to reader that disabled persons are the other and that we are so peculiar and alien that we can only be written about. We cannot have our own voices; we cannot speak for ourselves, we cannot discuss our own experiences, we cannot push back against narratives which stick us in boxes and hide us away.
In Miller’s piece, she says ‘Such is life with Tourette’s Syndrome.’ Not ‘such is life with my husband, who has Tourette’s Syndrome,’ or even just ‘such is life with my husband.’ And she uses her personal experiences with her husband as a springboard to position herself as an authority on Tourette’s, just as many other nondisabled ‘advocates’ use their family members as tools to suggest that they know what it’s like and thus should be provided with platforms to speak from. After all, it’s not like people with disabilities could self advocate, right? It’s a good thing we have those nondisabled folks around to speak for us.
Many of these pieces have common elements. It’s so hard living with someone who has a disability! But I love ou anyway! There are so many obstacles and barriers I face! It’s a real struggle, being nondisabled. The authors write about having to advocate all the time, or having to use tough love, and nary a mention is made of self-advocacy. Of the feelings of the subject of the article. These articles often feel like they are all about the sacrifices the author has been forced to make to ‘live with disability.’
We are subjects. We are topics of study. We are topics of discussion.
What we are not is autonomous human beings. We are not capable of communicating for ourselves.
It’s not that our voices aren’t out there. It’s not that it’s impossible to find people with disabilities to write about disability and to write about their experiences. It’s that our voices are rarely centred beyond the disability community. We are rarely asked, for example, to write about our own disability for the Washington Post. We are rarely profiled by the Daily Mail. The media wants to talk to the people who live and work with us, with our friends, but they do not want to talk to us.
Is it because actually allowing people with disabilities to speak would destroy the carefully structured beliefs of nondisabled people? Would it make people uncomfortable to know that we don’t appreciate being fetishized, treated like objects, and silenced? Would allowing us a platform mean that nondisabled people have to confront their own ableism and the ableism inherent in a lot of these ‘caregiver writes about subject’ narratives?