My Place in This Conversation

By Alison Piepmeier

I wasn’t forced to recognize my participation in oppressive systems related to disability until 2006, when activist and author Harriet McBryde Johnson called me out on it. I was hosting feminist events in spaces on campus that weren’t accessible to people with disabilities, and she noted that if I claim to be working for social justice, the use of inaccessible spaces undermined that effort. That was the point at which disability entered my consciousness in pragmatic ways. It not only became part of how I planned events, it also became a component of the content and structure of my course syllabi. But it didn’t become the focus of my research until I encountered it personally, when my daughter was born with Down syndrome.  At that point, my scholarly and activist selves were called into action.

I’ve been a feminist scholar all along. Even as the content of my work shifts, my approach remains the same, with an emphasis on eradicating all forms of oppression, which keep people from achieving their full humanity. And the connections between feminist theory and disability studies seem obvious to me.  Disability should automatically be part of feminist academic and activist approaches: once we’re aware of it, we should say, “Oh, right, of course!”

That this hasn’t been the case is troubling, but not inevitable. In recent years, for instance, the National Women’s Studies Association’s conference has begun featuring panels about feminist disability studies. One of this year’s prestigious “Author Meets Critics” forums featured feminist disability studies scholar Alison Kafer and her new book, Feminist, Queer, Crip. NWSA didn’t make a big announcement a few years ago letting folks know about this change or trying to get credit for it. Instead, they did what they should have done: simply made feminist disability studies a meaningful part of the academic feminist conversation.

It’s notable to me that intellectual disability is sometimes left out of these conversations—feminist conversations as well as disability studies conversations.  I suspect this is in part because people with intellectual disabilities don’t often write their own memoirs or analyses. I believe only two books on the market were written—not co-written, not extensively edited, but written or dictated—by people with Down syndrome:  Jason Kingsley and Mitchell Levitz’s Count Us In:  Growing Up with Down Syndrome (Harcourt, 1994) and Megan Adler’s recently released Up Sydrome:  It’s All About the Attitude (self-published, 2013).  Because people with Down syndrome aren’t attending the conferences, writing in the academic journals, or heading up activist efforts, they’re often ignored—not with hostility, but with a subconscious invoking of what Peggy McIntosh calls “the myth of meritocracy.”  There’s a way in which other issues related to disability—mobility issues, Deafness, blindness, the “freak” show—are seen as more important, and perhaps as more easily addressed.

Much of the writing done about people with intellectual disabilities is done by parents (with a few notable exceptions, including Licia Carlson’s The Faces of Intellectual Disability: Philosophical Reflections [Indiana University Press, 2009]).  I fit into this cohort:  I’m not a person with an intellectual disability, and I write about intellectual disabilities—about the reproductive decision-making that surrounds Down syndrome, in particular.

But being a parent who isn’t identified as disabled writing about my child who has an intellectual disability is tricky terrain. I don’t want to “speak for” my daughter.  Indeed, I find much of the “speaking for” work incredibly offensive (notably the big Autism Speaks group which works for “prevention, treatments, and a cure for autism”—which many people with autism don’t want).  I’m also troubled by parents writing about their own suffering: “Look, I have a child with a disability! This is so terrible!” These pieces often end with the upbeat “And now I see how foolish I was!” But such an ending doesn’t undo the extensive story that represents disability almost entirely as a source of sorrow (for more on this, see my essay in Disability Studies Quarterly).

I don’t want to be one of those parents. I’m currently at work on a book called The Good Mother: Confronting Impossible Choices and Changing the Game. Rather than writing exclusively about my own experience as a parent, as though that’s the only story that needs to be told, I’ve interviewed women who’ve terminated their pregnancies and those who have children with Down syndrome. As I listen to their stories, I consider the decision-making process as well as the cultural meanings of disability and some of the consequences of those meanings.

Down syndrome is a particularly interesting case study. In the past 40 years in the U.S., we’ve seen radical changes—a paradigm shift—in our understanding of Down syndrome. When Emily Perl Kingsley’s son, Jason (one of the authors of Count Us In), was born in 1974, the doctor told Kingsley and her husband to institutionalize him because he’d never walk, talk, be potty trained, or recognize them. In contrast, when my daughter Maybelle was born in 2008, I was told by an activist friend, “Maybelle will be able to attend the College of Charleston!” which, like 250 other colleges and universities nationwide, had created a program for individuals with intellectual disabilities.

In 2013, people with Down syndrome are being welcomed into an increasing number of colleges, are regularly given early intervention and therapies in schools, and are being made part of inclusive classrooms. And yet in this same moment, new non-invasive prenatal tests are being developed and marketed that allow women to learn in their first trimester, with no danger to the fetus, whether or not the fetus has Down syndrome. Although the tests aren’t explicitly advertised in this way, the fact that the results are available so early in the pregnancy—earlier than any previous test—means that it will be easier to terminate pregnancies when the fetus is identified as having Down syndrome.

This isn’t to say that women shouldn’t terminate: I’m an aggressive advocate of reproductive justice. But it’s significant that our mainstream understanding of Down syndrome hasn’t kept up with the radical changes in activism. New testing is available for potential parents who very often don’t know what Down syndrome means. For instance, one woman I interviewed was told by her doctor that kids with Down syndrome are routinely institutionalized. Just a few weeks ago, I had a conversation with another doctor who told me the same thing. The fact is, people with Down syndrome were institutionalized decades ago, but not today. This information was blatantly false, and it affects women’s decision-making.

We’re in a moment in which there are more laws and rights surrounding disability than there have ever been before. And yet we’re also living in a culture that values a certain ideal of “perfection,” in which genetic testing, chromosomal microarray, and the mapping of genomes are allowing us to learn more and more about ourselves and others—without a clear sense of what to do with that information. It’s a moment defined by contradiction and paradox.

As a parent, I’m personally invested in this paradox. Am I biased because of my passionate love for my daughter? Of course I am. And this bias is what helps make it possible for me to identify the flawed approaches our culture often takes to disability and people with disabilities. Most significant social justice movements have been initiated and motivated by people who are biased, whose lived experiences allow them to imagine full humanity more broadly.

I find Rosemarie Garland-Thomson’s definition of disability compelling: “What we call disability is perhaps the essential characteristic of being human.”  I agree; I see disability not as a problem to be solved or a defect to be eradicated, but as an embraceable form of human diversity. I am eager to be part of this conversation, in academic and activist settings.

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Alison Piepmeier is the author of several books, including Girl Zines: Making Media, Doing Feminism, and the forthcoming The Good Mother:  Confronting Impossible Choices and Changing the Game.  She directs the Women’s and Gender Studies Program at the College of Charleston where she is associate professor.  She blogs at alisonpiepmeier.blogspot.com.