Reconstructing Motherhood and Disability

I thoroughly enjoyed Reconstructing Motherhood and Disability in the Age of "Perfect" Babies, by Gail Heidi Landsman.  My response to it was similar to my response to Rayna Rapp’s Testing Women, Testing the Fetus:  The Social Impact of Amniocentesis in America, a book published ten years ago that examines women’s experiences and understandings of prenatal testing:  I was fascinated both personally and professionally.  I felt myself reflected in many of the quotes from interviewees, and I also found myself talking back to some of the women being interviewed, wanting them to see things differently.  I read both as a scholar and as the mother of a child with Down syndrome.  Both Landsman and Rapp are anthropologists, which makes me wonder if I have some as-yet undiscovered anthropological itch.

Landsman interviewed women who were mothers of children with disabilities; she interviewed them fairly shortly after the diagnosis, and then a year later.  Her findings were really interesting, and her interpretation of the interviews struck me as sensitive, nuanced, respectful, and revealing.  She herself is the mother of a daughter with a disability, which seems clearly to have aided her scholarship.  And, indeed, this is one of her points that I found most compelling:  she suggests that “what mothers of disabled children have come to know can be used to further our understanding of humanity and to promote the expression and experience of full lives for all people” (173).  She presents these mothers as theorists, not as victims or as “special mothers chosen for these special children”—familiar models in public discourse—but as knowledge producers.  Through their intimate, loving relationships with their children, these mothers have developed a critical stance on mainstream culture.

She doesn’t just unequivocally celebrate the mothers she interviews.  She notes that many of the mothers’ actions are aligned with a medicalized perspective on disability, one that views the disability as something separate from the actual child, and that proposes that the problem is with the child, not with the larger society.  With great sympathy and her own personal reflections, she questions the idea of “the cure” and some mothers’ desire to fix their children, or to change their children so that the children are as much as possible aligned with mainstream cultural norms and expectations.  Those in disability studies and the disability rights movement argue that the goal should be to change the culture itself, not to change the “faulty” individual.  They challenge the very notion of the faulty individual and argue—very convincingly—that disability is culturally constructed, and that much of the suffering attendant on disability is societally created.  But Landsman notes that even as they utilize parts of the medical paradigm, most of the mothers also challenge it.  And many of them come to embrace a potentially radical perspective, one not out of line with disability rights activism:

[A] number of mothers in the study describe a personal transformation in terms not only of rejecting the binary of normal/abnormal, but of embracing the very qualities in their child that are labeled by society as abnormal.  The child’s impairment is in this interpretation not relegated exclusively to a biology separate from the self, but rather is understood as integral to the child and infused with meaning. (207)

Furthermore, she argues that these mothers are reinventing motherhood as they go, that they’re offering new ways of understanding dependence and interdependence and that they’re developing new models for making visible the value of their children.  She also examines some of the ways that feminist discourse hasn’t taken these women, or their children, into account.  She offers a brief but revealing discussion of prenatal testing and abortion.  She shows the ways that her interviewees are challenging and changing the pliable notion of personhood—who counts as a full or “real” person and why.

On the whole, this is an excellent book, a must read for any medical personnel who deal with parents of children with disabilities, and of interest to anyone who’s studying motherhood or disability.  And for anyone who’s both a scholar and a parent of a child with a disability, I think you’ll find this hard to put down.