So I have officially been on hiatus from this blog for the past year as I am currently in the process of writing a book on youth rights issues. The current working title of the book is Youth Liberation: The Ageist Oppression of Children, Adolescents, and Young Adults and the Need for a Radical, Rights Based Revolution. I love it and I don't think it is going to change. Anyway, I figured that whenever I wanted to write about youth rights stuff, it would be more productive to put that time and energy into the book than into the blog. However, there are some things which don't feel right for inclusion in the book but which I think do merit a blog post and that is what has got me checking in from my official hiatus status today. Today the topic is parents who share inappropriately about their child's disability issues online and with people in other contexts.
Recently I defriended someone on Facebook that I had grown up with. I hated to do this as this was someone whom at one time I had greatly respected but I had felt my respect winnowing away after watching this individual make a series of what I can only describe as increasingly problematic parenting choices which she then sought robust community approval for. I'm not going to go into detail about all of the things I saw this individual doing which bothered me as a queer feminist enmeshed in the youth and disability rights communities, but suffice to say that I watched the train wreck in slow motion, knowing that there was little that I could do to stop it. But the thing which finally put me over the edge and made me feel that I had to call this person out and defriend them was seeing them share the actual physical copy of their daughter's gynecological records online along with a heaping side of cringeworthy sexist, heterosexist, ageist, and ableist comments from this mother that would make anyone with even an ounce of intersectional feminist sensibility want to throw up. I felt complicit and I made a choice to tell this mother that this was not appropriate and that I did not wish to be Facebook friends with someone who inappropriately shared private details about their child's medical history online. This is an adolescent young woman we are talking about here, not a baby. I can see contexts where the young woman herself choosing to share this information could be helpful, but to share it for all and sundry to see on Facebook along with her mother's inappropriate comments struck me as obviously and severely wrong.
What this mother was doing was turning her daughter into something like a zoo exhibit in a way that no calls to raise awareness could justify. If a medical provider had shared this type of information about a patient on Facebook, they would be in violation of a slew of state and federal laws and yet somehow it's supposed to be okay when a parent does it in regards to their child?!?!?! This mother claimed that their daughter consented to this, but growing up in a household where boundaries are violated and she is infantilized, there is no way in which that consent could be meaningful. And this is something that the mother never even should have asked of her child in the first place. It sickened me. It saddened me. It angered me. And the fact that no one but me was speaking to this as a problematic thing to do only speaks to the way in which over the years this mother has worn down any sense of appropriate boundaries regarding her daughter in reference to her community. Over time, she had normalized things that should never be viewed as normal.
On the other extreme end of this issue, I recently saw a post in which a parent was patting themselves on the back for telling their disabled child that they did not need to explain to others about their condition and the devices needed to manage it. Instead of helping her child to figure out how much he wanted to disclose and how, recognizing that such things would be necessary as one moves through space as a visibly disabled individual, this mother seemed to feel that the answer was to tell her child "My mother says I don't have to answer that." There is so much that is problematic about this statement. First of all, it's centering the mother's voice, turning the child into a puppet for her views. Secondly, as this is likely to come up again and again as an issue and it's safe to assume that curiosity, especially from children, is not necessarily a sign of malice, wouldn't it make more sense to work with the child to come up with a standard answer to the question that is friendly and informative without giving away too much private information? Wouldn't this be a more helpful and humane way to teach a disabled child to navigate the world? Nah, that would make too much sense!
So what unites the mother sharing her daughter's gynecological records on Facebook and the mother who tells her child to answer any question about their disability with "My mother says I don't have to answer that?" Of course, they are both fools despite existing on opposite ends of the disabled child sharing spectrum, but they are also both centering their own response instead of thinking seriously about what would be most helpful for their child and helping their child to use their own voice and create and enforce their own boundaries. That's why this post is titled "Youth With Disabilities: They Get To Set the Tone!"
