Disability studies

I've been doing some reading in the field of disability studies. This is a newish interdisciplinary academic field that explores the social, cultural, political, and material meanings of disability. It's a field that I've been aware of since I did my dissertation back a decade ago. One of my chapters dealt with the prevalence of freak shows in the 19th century, and much of the most interesting work on freak shows was being done by scholars who located themselves in disability studies. Freaks, these scholars argued convincingly, are constructed by narrative. Bodies that might not fit typical models become "freaks" when a label and a story are attached, and the bodies are made into a public spectacle.

I was again exposed to disability studies a couple of years ago when a local Charleston activist and attorney called me on the fact that we were holding Women's and Gender Studies events in venues that weren't accessible. Initially I was defensive--"Well," I thought, "we're doing the best we can, and there aren't that many accessible buildings on campus!"--but then I realized that she was right, and I started rescheduling things. I read her autobiography, which disability studies scholars cite, and found it fascinating. Like the freak show scholarship, it forced me to consider how much of "disability" is culturally constructed rather than inherent or "natural."

When Maybelle was born I suspected I would return to the field of disability studies, but I wasn't ready to do it for some time. Then when she'd been around for a few months, a friend sent me a link to Michael Berube's blog, to this post, in fact, a post about his misconceptions about his son, Jamie, who has Down syndrome. I remember a flood of reactions, most of them related to relief: relief that his son was able to do so many things that he hadn't expected, relief that this was a prolific academic whose career hadn't ground to a halt because of being the father of a person with Down syndrome. Almost immediately after I finished reading the post, I searched around online and found information about Berube's wife, also an academic, and I quickly confirmed that her career hadn't ground to a halt, either--so the relief stuck. (It's all well and good for one parent to get to be a super star, but if that's because the other parent has become a martyr, then that's not a model that will work for our family.)

During the spring semester I read Berube's book about his son's early years, and it was the right book for the right time. It combined personal experiences with research and scholarly musings about the history of Down syndrome, the importance of rhetoric, and the meaning of genetics. Like the freak show research, Berube's book points out that the way we describe disabilities in large part determines their cultural meaning. For instance, the question of whether someone is "retarded" or "intellectually delayed" has real world consequences.

So Berube's book has set me on a path. I'm seeking out other things like it--books and essays by academics who are grappling with disability studies from a personal as well as a scholarly perspective. I've been reading Eva Feder Kittay, Rayna Rapp, and Rosemarie Garland Thomson. If you know of others--particularly academics who have kids with disabilities--let me know in the comments section. I'm sure I'll have more to say here.


Up with People

Claire and Conseula have gotten so much pleasure from this news that I thought I'd share it with the rest of you: my parents are in Branson, MO, this week rehearsing for their Up with People reunion show, which will happen this weekend. My parents, for those of you who don't know this, met in Up with People back in the early days of the group--they both dropped out of college to travel the world performing positive, encouraging music, and they got to go to some amazing places (Europe, South America, what was then the Belgian Congo) and stay with families there. My dad was drafted as a direct result of being in Up with People (since he was no longer a college student).

My brothers and I grew up with the Up with People music (indeed, right now I could sing all the words to "Up with People," "What Color Is God's Skin?", "Don't Stand Still," and many more!). I am sort of bummed that Maybelle and I won't be going to the concert.


Father's Day

This morning, as we were sitting at the table reading the paper, Biffle asked, "So, you got anything special planned for me today?"

I said, "What do you mean?"

"You know, because it's Father's Day."

Ack! It's Father's Day! I had completely forgotten. He was mostly joking in asking whether I had any special plans for him, but I felt terrible to have forgotten--particularly since he made me brunch for Mother's Day.

And then I remembered that the reason he made me brunch was that I kept talking about Mother's Day, and the reason I kept talking about it was that people--my family, mostly, but not exclusively--kept asking what Biffle was going to do for me for my first Mother's Day. So it was on my mind, and I made sure it was on his mind. (I'm a big believer in making your wishes known--if I expect a gift or any other sort of specialness, I try to put those expectations out there as clearly as possible rather than expecting someone to know or remember.)

But nobody asked me what I was getting Biffle, or reminded me that Father's Day was coming up and that he is a father!

I don't know if this is some gender double standard, if we don't care as much about Father's Day because we consider mothers more important, or what, but I hold all of you blog readers personally responsible for not reminding me!

P.S. We ended up having a really nice day--bagels and the New York Times for breakfast, a long walk in the blistering heat, and later we took Maybelle to the beach for the very first time.


Sitting up for real

Sitting up with Daddy, originally uploaded by AlisonPiepmeier.

Within the last week, Maybelle has learned how to go from sitting with her hands propping her up, to sitting unsupported. Apparently this is a big deal for a baby's cognitive development, because it means that her hands are free to explore the world around her, and she can learn about cause and effect, gravity, object permanence, not to mention how a wider variety of things taste.


Prenatal testing and reproductive rights

Eliza alerted me to the fact that there's some discussion going on at Double X about late-term abortions. It started as a series of articles about the truth behind late-term abortions; in response to the death of Dr. George Tiller, the magazine wanted to allow women who've had late-term abortions to discuss their experiences as a way of cutting through all the anti-choice hysteria. It quickly progressed, however, into a discussion of whether or not it's a good idea to abort all fetuses identified as having Down syndrome. Some quotes from the articles:

The answer to the last question, by the way, is yes.

Commenters have gotten all hyped up--I didn't read all the comments but skimmed through enough to see that people were all over the place. But there were a number of commenters who discussed what a huge burden disabled folks put on families and how unfair it is to the families, and the babies themselves, not to have prenatal testing and not to abort disabled fetuses.

I will have more thoughts on this, but here are three things I would like to say today:
  1. The right to terminate a pregnancy is incredibly important. A woman's whole life is affected by a pregnancy and a child, and if we want women to be allowed to be fully human, we must allow them the right to abortion.
  2. Many times decisions about abortion are difficult and complex, but the woman involved (with her partner, if applicable) is the best able to make that decision. Even if we might disagree with her decision, no one else--no individual, no institution, no agency--is better able to weigh all the factors and make that decision.
  3. People need real information about life with a disabled child in order to make the best decision they can about whether or not to terminate a pregnancy. At this point I think what they're getting is a lot of hype, stereotype, and misinformation. If the Double X comments are any indication, people out there seem to believe that having a child with Down syndrome will be the end of life as you know it. Everything will change for the worse, and you will rue the day you didn't abort. I thought those things when we had Maybelle. My experience as her mom so far, and my far broader understanding of life with Down syndrome, shows me how wrong I was.
I'm offended by the defensiveness I see in these articles and many of the comments. I get the sense that these folks want to justify their own decisions by making sure everybody knows how awful it would be to live with a child who was intellectually and developmentally delayed. I support their right to make their own choices about their pregnancies, but when they start talking about the burden that disabled people put on families and on the state, then they are actually making the world a worse place for my daughter.


Straight hair

Claire and I got our hair cut yesterday. It was long past time for me to have my hair cut, because I'd reverted to my old habit of wearing my hair in a ponytail everyday out of frustration. Claire actually made us the appointment--who knows how long it would have taken me to get around to it.

It seems to me that pregnancy and breastfeeding have sucked all the life out of my hair. Instead of having gorgeous curls, lately I'm mostly stuck with frizz and unruly tendrils. So I told the stylist that I wanted a better haircut, with three requirements:

  1. I will not do anything to my hair. I don't own a blowdryer, and I will not do any at-home styling.
  2. The only exception to #1 is that I'll put product (and lots of it) in my hair.
  3. No bangs.
So she chopped and thinned and layered--there was a lot of hair on the floor when she finished. And then she decided that, for her own enjoyment, she wanted to see what my hair would look like straightened. I told her it's never been done before, so she decided she would be the first. She got out the straightening iron. An hour later (yes, a full hour!), here is what I looked like:
Pretty wild, isn't it? Apparently it'll stay like this until I wash it, so I'm enjoying having a completely different head of hair for a couple of days.


The Ween and Benya

Over the months, we've posted a couple of pictures of Maybelle and Benya together, to document the Ween's growth. Here's the latest installment, showing not only how much bigger she is but also how much more active:

For comparison's sake, here's one from December and the earliest one, from September.

Looking at these pictures, it seems to me that Maybelle is staying the same size and Benya is just shrinking.


George Tiller

George Tiller, a doctor in Kansas who was a long-time activist for abortion rights and one of the few doctors in the country who provided late-term abortions, was murdered in his church yesterday morning. He was a target of anti-abortion vitriol for years and had been shot before. I'm not sure what to say about this. He was killed for providing a legal, and much needed, service for women.

Anti-abortion extremists have already done their best to make it frightening to go to a clinic to have an abortion and to escort patients into those clinics. The culture of silence around abortion means that most of the 43% of women in the US who have abortions don't talk about it openly. And now, for the first time in a long time--since I was in college, I think--they've upped the ante and engaged in an overt act of terrorism.

I was talking with a student today whose father was encouraging her to stop escorting patients at the clinic in Charleston, since he's afraid George Tiller's murder will incite the Charleston protestors to more harassment and violence. She said that her inclination was to do the opposite of what her father wanted, to mobilize more escorts and show up in force at the clinic. I think this is the right impulse. Those of us who've had abortions need to speak out unapologetically. Those of us who believe in reproductive justice need to write letters, call our legislators, and show up on Saturday mornings to support women who are making a very important life decision and who want to do so safely.

Update for those in Charleston: There will be a candlelight vigil for Dr. Tiller on Wednesday, June 3, at 8pm in Marion Square. Bring your own candles or flashlights.