Monday, October 26, 2009

Blogging for Kids with Disabilities

Blogging for Kids With Disabilities

We talk a lot about children out here in the academic blogosphere. Much of the time, the conversation is about how kids and parenting affect us in the workplace, whether we *are* the parents or we feel that we are expected to pick up the slack for our colleagues so that they can be better parents. Most of those conversations touch on the issue of choice, whether it is our choice to remain child-free, or the choice of our colleagues to have children. I happen to be one of those people who tend towards seeing my colleagues' families as a lifestyle choice, and one that I should not be expected to subsidize through my efforts, even though I also am very happy to rearrange my time to accommodate their schedules whenever I can. I might feel differently if I didn't work in a place where my colleagues were also my friends, I suppose. As it is, the kids are people I know and like, and I enjoy spending time with them as well as their parents. Still, there are times, professionally and socially, when my colleagues' chosen lives have an impact on mine and, if it comes down to someone else's finding a sitter or me rescheduling a trip, they can find a sitter. It was their choice to have kids.

Sometimes, though, it's not always that simple. When we choose to have kids, most of us imagine that the kids will be healthy and relatively happy. Yes, we expect illness and tantrums, and that little kids will need more care than their older siblings, but that they'll eventually grow up and take care of themselves -- and maybe even us. Sometimes, what we ask for is not exactly what we get. The choice to have children ends up coming with obligations we never imagined. That's something we don't talk about in our conversations about academic parenting, either because we instinctively know that a child with disabilities creates a different situation, or because we are uncomfortable talking about it, or because we have mixed feelings about how to deal with our colleagues when the colleagues may themselves not be dealing well -- or when they seem to be dealing very well. Mostly, I think we just aren't sure of how to handle the whole subject.

The reason I bring this up is that it's Blogging for Kids With Disabilities day, or so I hear. I have several friends and family members whose children have disabilities, from genetic disorders to autism to milder learning- and speech impairments. The Kid, about whom I have not spoken for a while, has a congenital hearing problem, so that she is mostly deaf in one ear, and partially deaf in the other. Even something so relatively explicable can have unforeseen problems: when we lived abroad, and tried to explain to her teachers that she needed to sit near the front of the room to read lips and that her loud voice was partially due to not being able to hear how loud she was, or that the teacher might have to touch her or tap her desk to get her attention in a loud room, we were told that she might be better off in a 'special' school. WTF? Because she was embarrassed about it, we had to mention these things to other parents, so they wouldn't think she was ridiculously rude. It was difficult, and still can be, but it's hardly insurmountable.

Still dealing with the Kid, and with some behavioral issues that were in part the result of her being treated for years as a problem child who couldn't pay attention, ate into a good chunk of my dissertation time. This is something we don't talk about much, either, even when talking about childcare and the fact that women academics often still bear the brunt of housework and childcare, and how it affects their careers. If childcare and equity are feminist issues, then perhaps we should think a bit more about how having a child with disabilities might make things even tougher.

The reason I would like people to think is because, contrary to what you might be feeling right now, I don't see this as a problem to be dealt with. I see this as something we should think about, and if we do, we might be reminded of how amazing some of our friends, families, and colleagues are. Not because they have a problem, but because honestly, parenting is hard, and parenting a child with disabilities can be even harder. And yet, when I think of my colleagues who have children with disabilities, they are all scary overachievers. They are the people you most want to work with, and honestly, I don't know how some of them manage sometimes. Well, I do, a little. They make other choices, choices we don't see. They don't go for the jobs that will keep them away from home at all hours. They don't travel as much, sometimes, because it would be too hard on a partner or child if they took that fellowship. They might not eat out or go to movies much, whether because they are paying for extra tuition or maybe because they know their kid isn't quite ready for the sensory input of a crowd, or darkened cinema with loud noises and flickering lights. They may not come to parties because they are spending extra time helping their kids train for the Special Olympics ...

And they may not mind, or they may be resolved, or they may scream and cry in frustration to the world, and then show up to the office, looking a little drained, but still plowing through the backlog that we all have.

Maybe when we start talking about children being a choice, we might want to also think about the other choices people make, from changing one's research agenda and mobility to being a scary overachiever who not only has incurred the wrath of David Horowitz, but also spends a lot of time blogging about politics and disabilities, all the while shaming the rest of us mortals who never, ever threw a birthday party this cool, to handling so much of the behind-the-scenes work at the biggest conference most of my friends and colleagues attend, writing amazing fiction, and making pottery so lovely that I could easily go broke buying it -- all the while trying to balance the needs of both of her children. I'm just sayin'...


Kelly in Kansas said...

My neighbor manages a home for adults with various disabilities and is just amazing with his clients. He is quite an inspiration with his work for Special Olympics and was recognized in a People Magazine contest recently. My other neighbor has a multiple-disabled child and there are so good with him.

You're absolutely right that we need to discuss how to best handle some of these situations to the benefit of everyone.

WhereforCare said...

Very compelling article. I wrote a similar piece about choosiing to have children:

However, regardless of your position in this argument, there is no doubt that these 'super parents' make sacrifices without even thinking that most of us wouldn't even consider.

Unknown said...

Blogging for kids with disabilities can be a great platform for them to make other people understand them. It can also help them with their creativity.