I have been thinking a lot about how parents of disabled children talk about, share, and interpret their experiences … and with whom. I am thinking partially about the #CrippingTheMighty thing, a clash a website about disability that has a distinctly parent-centered and traditional disability paradigm flavor, and adults with disabilities, most of them bloggers, and people who consider themselves disability activists and proud participants in disability culture. One of the biggest points of contention is whether it is responsible and ethical for parents to share intimate details about their disabled children, and whether it’s ever okay for parents to share negative stories about their kids, or publicly describe their own darker, more despairing feelings about their children’s disabilities.
I find myself wondering whether my mother or father would have gone on social media or blogged about their feelings and experiences when they had a disabled child they named Andrew, if such technologies had been available to them 48 years ago. As it happened, I don’t think either Mom or Dad ever did anything to share their feelings or thoughts on disability publicly. They talked with close friends and family of course, thought I doubt they did even that very often. I know, or I was told, about an incident where one of my mother’s friends sharply delivered Mom a bit of a verbal smackdown when she was having a very low moment, a few months after my birth. It’s my mother herself who told me about it years later … how her friend said something like “Well, it sure would have been easier if he’d never been born, wouldn’t it?” probably in a very sarcastic and severe manner. Mom said this was a major turning point for her, shifting her abruptly from “Why me?” mode into the “Get on with it” mode she pretty much stayed in until the day she died … at least as far as me and my disabilities were concerned.
The point is she never made any of this public. I guess that’s what I am doing now. Mom died about ten years ago, but now I’m wondering anyway whether it's ethical for me to share this story about her. Mom never made a public issue of me or my disabilities, or her feelings about them. It’s not because she was ashamed, or to protect me from some perceived embarrassment. I think it’s because of some very old-fashioned, WWII-era, “Greatest Generation” old-time liberal, and WASP values. Don’t call attention to yourself. Don’t puff yourself up or brag. Don’t complain about things for yourself. Fight for social justice, but don’t make it personal. Don’t be selfish or narcissistic. Keep private things private. Don't share your feelings with strangers, just to share your feelings. Don't look to others for validation.
Mom and Dad imparted these values to me, and they have mostly served me well. Over time, I have had to revise some of them, most notably by loosening the unwritten taboos against self-advocacy. When you are, in fact, part of an oppressed minority … in my case disabled … self-advocacy is a necessity, not an indulgence. I have also come to appreciate the benefit and value of talking publicly about the disability experience, though I still mostly prefer philosophical and policy discussions over introspection.
I don’t think it would ever have occurred to my parents to share their deepest feelings about me and my disabilities in anything like social media, blogging, or essays published in something like “The Mighty” or the “Huffington Post.” On balance, I think that’s to their credit. On the other hand, if they had been persuaded to share, they might have done it really, really well, and I think they would have had all the necessary instincts of self-criticism to prevent them from making fools of themselves, or me, in the process. So maybe it's a loss that they never really had the opportunity.
Maybe what we should shoot for is for parents of disabled kids to feel a bit more free than my parents did to share their experiences, but with a bit more of their reticence and their discretion. Would that be so hard to achieve?