I went off to a "My Time" support group thing today, for "carers" of children with disabilities. This is a group that has, in the past, sometimes annoyed me for its general "oh, you have milk in your tea! So do I!!" level of discussion, which then becomes real and connected in the last five minutes as people are haring off to meet their various deadlines. Anyway, today was interesting and strangely moving in the way these things often are. Also, having an opinionated-pain-in-the-arse personality style (while pretending to be "lovely") I had sent an email to the facilitator saying, well, I'd find this useful if it dealt with issues like x, y, z and q. Q being "how do you talk to other people about your kids' disability" aka, the politics of disclosure.
And whadayaknow it came up today.
In some ways, of course, there's no guide for this. There's no right way and nothing can save you from the crack-in-the-voice moment, or even the startle-a-stranger-and-leave-them gasping moments, but I think I"m getting better at it, and better at deciding when to say nothing.
But there was a woman there who I'd met only once before, on her very first time of attending anything like this. She was so raw the pinkness shone through her well armoured exterior (just to mix a metaphor or two but, really . . .). Her son has a condition that's terminal. He's three. And these are the first things she lets you know about him. He's also quite a happy wee boy, who likes puzzles, seems pretty relaxed in a room with strangers, and knew how to keep an eye out for the tube attached to his gastro button feeder contraption. And the first time I met her, we were having the regulation Resilience conversation. How to increase your resilience; what you might do; strategies and so on. We also talked about what we did to keep ourselves sane.
And she looked at all of us, firmly and with conviction, and said:
I Don't Know How to Be Happy.
I can't, she said, think of anything I'd like to do. I don't have any time to myself. I can't even remember being happy.
This rocked me back on my heels.
So this morning, she seemed a bit more positive at least. She'd found something she liked to do and had time to do for 2 hours on a Tuesday afternoon or something equally grim (grim because it was only two hours; and the activity sounded pretty dire to me, too, but I won't go into that as it'll make me sound like an up-myself snob, tra la). But I was also struck by her worldview as we talked about disclosure and talking about your child. She tells everyone, she says, and tells them the name of the disease, and that it's terminal . . . in case one of those people turned out to be a doctor or scientist who might find a cure. And related to that, was a presumption that most people were judging her, were unkind and unsympathetic, and if they asked a question well hey it served them right if they were startled by the answer. So everywhere she went, it seemed, she was looking for both opposition and salvation. Opposition and salvation, I think there's a lot there to tease out, if I had half a chance. Her son was standing up in a foodhall recently, with his feeding contraption, and a woman was "glaring" at them. And so, she said, I said to her Have You Got a Problem? And she said "fuck off" and I said and she said and it all sounded deeply aggressive and unpleasant and confronting.
And, she said, I don't cry any more. I'm hardened. Again, perhaps raw and scraped and exposed, rather; perhaps a carapace of pain.
The ground rules for these types of groups, though, tend to be that you don't find easy solutions or presume to have answers. Suggestions and exchanges and stories, sure. So none of us could say, "Maybe the other woman wasn't juding you at all" or "give yourself a break, don't expose yourself by telling everyone and, really, the person you miss won't be the genius who could find the cure". So we don't say any of that.
The other woman who was there had a curiously flat and passive manner, but she really warmed up. Her child is eight, whereas the rest of us had 2 or 3 year olds; and she was clearly exhausted and worn down . . . but then revealed all these clever strategies. Things she'd done and said; what she'd resolved. The socialworker facilitating tried to say as much to this woman, and she was such a worn down little rabbit that she thought she was being criticised rather than complemented.
So the session left me feeling tenderly towards these comrades-in-arms, even though each of them aren't at all the sort of people I'd hang out with. I tried to raise the question of how we do disclosure so we're not taking over and talking for our kids, but given their ages and inability to speak for themselves it's a bit tricky; and more and more it seems a question the "carer" community is scared of dealing with. But I can't help but think about all the disability-activism about autonomy and identity, and what this might mean for how you do it well as a parent to allow for that. How the hell do I honour that impulse, when Morgaine will be totally dependant on us, very likely, forever? Again again again I do hope she might be able to speak, or sign, or have some system of communication one day. Even if she can't sit or stand or walk, I hope she can one day tell us to bugger off and leave her alone; or say that she wants to do something; or let us know what she things.
Then again, as she stroked my arm while I was feeding her, I like to think she was showing me some of what she was thinking, and feeling. And she certainly knows how to laugh. Thinking of which, my half an hour is up (Clancy is asleep on my back, which makes me feel a little like an earnest cliche), and I need to go and get my girl from childcare. I know the inclusion impulse is working well, because she came home the other day with finger-shaped bruises on her calves, and an impressive bite mark. Yay, for the democratic pipsqueakery of the playground. Snort.
Comments