I wanted to alert readers to the fact that I've (finally!) put a new post up at Girl w/Pen, a post about community. I know that a number of the people reading the blog these days are moms of kids with disabilities, and I'd certainly be interested in your thoughts on that post.
10 years ago
12 comments:
Based on your article, I think you might enjoy meeting Candee....http://candeebasford.wordpress.com
Thank you for letting us know- I am inspired!
I'll bite. [At the risk of posting on your blog – apologies]
Compared to this country 50 years ago, we have made epic strides towards acceptance & diversity. Even if those thoughts are imperfect in practice, the concepts are now mainstream and legally mandated.
However I don’t have faith the (very different) stigma attached to either physical or cognitive disabilities will erode much more than it has. Physically, simply because it is a bit more challenging to get around. You can’t simultaneously design a house for someone 6’4” and someone in a wheelchair. At least not in a space and cost-efficient way. (I’m guessing) there are more people over 6’ than those in chairs –statistically you’ll end up with lots of cabinets out of reach. Cognitively because, well, that affects WHO YOU ARE and what you do with your life. Your entire self exists in those firing neurons above your shoulders. If the neurons aren’t firing as fast, do you not catch others’ puns & innuendo? Not appreciate a much-loved book? Not go to law school? Do you no longer get to rail against the patriarchy?
I might get hammered for this, but those issues are not just “differences”, they make things harder (and reduce your career options). Life is hard enough, no one wants to be any further back from the starting line then nature & nurture already set them. And that makes people uncomfortable. Discomfort leads to avoidance, avoidance leads to stigma… Does greater visibility & familiarity overcome that? What’s the goal? How many TV roles are needed?
Which leads me to a question: All that said I think our society has great faith in science –stem cells will eventually regrow spinal cords, get people out of wheelchairs, etc. It may even improve cognition (go UCSD!). But according to my newsfeed all that science seems to be doing right now is making it easier to identify targets. Please don’t misunderstand me – I’m fervently pro-choice, but am horrifically uncomfortable with the statistics. It strikes me that in the span of one generation we’ve gone from hiding our kids in institutions to not having them at all – not exactly a path to greater familiarity & acceptance. Flooding the internet with pictures of my cute girl in pigtails & hairbows won’t change that. Your thoughts?
Starrlife, thanks for the link to the great blog!
krlr, a quick response now, and maybe I'll write something lengthier soon. I think you and I are in agreement about a lot: we're both opposed to the stigma surrounding disability, we're both very pro-choice, and we're both deeply troubled by the extent to which prenatal testing ends in the termination of pregnancies if the fetus is identified as having Down syndrome. It seems the only potential disagreement is that I'm in a place of viewing disability as embraceable human diversity. I'm not going to say that it makes life easier to have a disability, but I do believe that the existence of people like Maybelle, and your daughter and starrlife's daughter, makes the world better.
And for what it's worth, I definitely expect our girls to rail against the patriarchy!
Yikes - I shouldn't write so late at night. OF COURSE diversity makes the world a better place. I just don't think the masses get to that place on their own (because of the aforementioned challenges)--but familiarity breeds comfort, breeds acceptance/embracing. How do you bring about familiarity/et al without the numbers? (Obviously speaking very specifically about DS here) Without more kids like ours out & about, leading happy productive lives, how do folks learn to not see this as a tragedy warranting termination? Esp in THOSE numbers?
[sorry. have completely hijacked your blog now. Please email instead if you don't want to post]
No, you haven't hijacked! I love a good blog comment conversation.
I also love your question about how to break through people's stereotypes and stigmas. In my graduate class we were talking about personal relationships, because I do think that's huge: you know someone with Down syndrome in a personal way, and it becomes much harder to believe the lies our culture tells.
My graduate students made the very hopeful comment that they think that as students of disability studies, they'll be able to recognize this issue as important without requiring the personal relationship for their breakthrough moment.
And I think the blogging makes a difference, too.
More thoughts soon--I'm exhausted and heading to bed now!
I think there might be an underlying issue relating to one's ability to accept the potential for diversity and change within their own personal identity. Accepting others for who they are is easier than accepting a new identity for one's self.
I'm speaking specifically about the comments about prenatal testing ending up in termination for DS fetuses. Is this really the lack of acceptance of those with DS or the lack of being able to accept a new personal identity that is "different" than the one you've held so dear.
Just a late night thought.
Aaron, do you mean that parents (or potential parents) freak out at the notion of how they will be different if they have a child with Down syndrome? Like, "I'm just not up for this! This would be too big a burden/change/challenge for me?" I think there's a lot of truth to that.
Yeah, I think there's a lot of truth to that too. Definitely one's self-efficacy for being able to handle the anticipated burden/challenge of having a kid with DS will play a big role in the prenatal testing/ termination decision. I think the burden/challenge of having kids, regardless of the actual kid, is the main reason for a lot of terminations.
But, I'm speaking more of the self-efficacy of changing your personal identity from "potential parent" to "potential parent of a kid with DS." As you've noted, it's liking becoming a part of a different "tribe." Maybe some people don't want to be a part of a different tribe because they can't imagine/don't want their personal identity to change that "much" or in that "way."
There's certainly a connection between how we view our society, and the micro-cultures within that society, and how we relate to ourselves and our own identities. So, I think our ability to look at others (all others) as whole people [or even better as being directly connected to ourselves (spiritually, emotionally, socially, neurologically -have you read up on mirror neurons yet)] will make us realize that we have to add the extra chairs to the welcome table ourselves.
does that make sense?
Well, something about this post has brought out the thoughtful and analytical side in a lot of us.
Yes, what you're saying makes sense, Aaron (except for the neurons stuff--damned grad school!). There's good research that shows that the perceived burden of raising a kid isn't actually much different for raising a typical kid or a kid with a disability. So while all parenting is a burden, I think we believe that it's going to be much worse if we have a kid with a disability. And it isn't.
I'm fascinated by the narratives we believe, about ourselves, about our society, and about disability. I think this is going to be my next research project. Yeah, I think parents are afraid of belonging to the tribe. I was afraid, and I was afraid because of what I thought it might mean for my life. As it turns out, it's been fabulous for my life. But I didn't know that ahead of time, and I think that's at least in large part because the narratives weren't out there.
I worry that DS cannot stand in for all disablity. Autism can bring challenges that are very difficult for parents. Genetic disorders like Tay Sachs and the Trisomy disorders- who would say that these situations are not more challenging than raising NT children? I mean, no one could be that cruel (Emily Rapp has a blog on this.) But NT children pose challenges are varying rates, too. So I would just wish that any contest between "how easy" raising a child is be ended. That just doesn't matter, right? And then in this case, if some moms write that they find raising their child challenging- it can be OK- they can be believed and it can be left at that. Or I would think.
Maybe the issue is not how much work a child will be, but how much parents put their own ego into some idealized child-production. Now criticism of that I'd be all in favor of!
Thanks for the thoughts.
Wow, I always respond to blog comments late at night, so I apologize for (regularly!) having half thought-through responses.
Totally agree that DS can't stand in for all disability. In the prenatal testing debate I do think we need to have a look at DS, because it's statistically most often the thing searched/terminated for (although Tay Sachs is a major prenatal testing motivation for certain populations, and it and the other trisomies are clearly very different than DS).
I also totally agree that the "how easy" question is unproductive and unanswerable for any kid. The "how good and satisfied a life can I/we have?" question is more valid, and certainly ties in to parental ego, cultural narratives, cultural supports and accommodations, etc.
Okay, now I'm going to cite some research--I apologize! A recent book I really enjoyed noted:
“Parenting a (disabled) child can be tiring, distressing, upsetting and heartbreaking. It can also be rewarding, affirming, enjoyable and heartwarming. We heard all of these emotions in the accounts of parents even during the shortest conversations” (96). (McLaughlin, Janice, Dan Goodley, Emma Clavering, and Pamela Fisher. Families Raising Disabled Children: Enabling Care and Social Justice. London: Palgrave Macmillan, 2008.)
Thank you for your thoughtful comment!
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