Privacy has a bit of a different meaning for me than most people. I hire people to help me shower and help me dress. This is not something I am ashamed of, or that makes me less than anybody else. I’m ok with it, partly because I’ve always had to live with it, but mostly because I get to choose who I am vulnerable with, this has not always been the case.
As I grew up with my disability this vulnerability was most often not within my control, and that was always difficult, always. When I was in elementary school more people had access to my body and its functions than I can count. I remember reading a poem about a butterfly pinned up in a shadowbox, and people were looking at it, checking it for flaws, and realizing how much I felt like that butterfly. I was told this was normal, I’m sure my parents were told this was normal, but it never felt normal. I was told it made things easier. I wonder if any of those professionals thought about how all of that public access to my body was going to be viewed by the teenaged me as she tried to claim her body as her own. How do you claim sacred space after years of no one asking your permission?
When I got older and on social assistance, privacy became even less tangible to me. To go on social assistance you sign over access to your bank records and your medical information, so you can maybe have enough money to cover rent and a little bit of food. Again I was supposed to be ok with this, because I have a disability, and there was nothing I could do about this for a long time, because I have medical costs, and it took ten years to find a job that someone hire me for. I signed over my life, and promised to live alone, so I could eat; we all do. I’m now working, and have for a few years, but it’s hard to shake that feeling of someone watching over your shoulder.
Many disabled men and women have experiences similar to these, and the chilling effect these experiences have is immense. We don’t need whistleblowers to tell us how the loss of privacy silences our voices. The worst part is that many of us who can speak out distance ourselves from those who are more marginalized, and we forget what it’s like. Then we wonder why we have leaders who fight for tax breaks and building codes while people sign over their privacy so they can eat and shower.
Today on the sidewalk there was a man in a wheelchair like mine singing for change. I gave him a toonie, what I wanted to give was my solidarity. If my life had different circumstances that could be me, and I can’t forget that. If we don’t hold each other up we will all be pushed down when they tell us what we disabled people should expect.
“…If we do not define ourselves for ourselves, we will be defined by others – and for their use and to our detriment.”
~ Audre Lorde
3 thoughts on “Some thoughts on Disability, Privacy, and Privilege”
Melissa what a great piece. I enjoyed reading your perspective and sometimes us able bodies forget about so many things. Thanks for writing this as it allowed me to take a moment a remember I have it way easier than some but not only that how I can hopefully give someone this week at work the ability. You are such an amazing person.
Your article tonight really hit home. For me it was spending almost 7 years in hospitals, living in wards with no curtains between the beds. In a teaching hospital, with me being an “interesting”case, meant parading in my underwear in front of groups of medical students, hearing my body being referred to as a mess. Fast forward, and going into Sexuality and Disability work, hoping to help folks bypass some of the shame and lack of ownership of the body. Fast forward again to reading tonight of a law being proposed in Italy to train volunteers how to have sex with disabled people so they at least have sex with someone in their life while they suffer with having a disability. I want to scream! Have we gotten nowhere in all these years of fighting, advocating, mentoring? We are still being pitied. Or, murdered by family members “for our own good”. Argh!
Uplifting piece Melissa. Love this.