Taking Care: Lessons from Mothers with Disabilities by Mary Grimley Mason, Linda Long-Bellil (review)

The twenty-six life stories of disabled mothers presented in this book are hopeful and sobering—hopeful, in that every woman interviewed managed to negotiate social barriers and lack of support and found the experience of mothering life affirming. But also sobering, in that these women often faced negative attitudes, doctors unschooled in disability, and social programs that do not provide supports for mothering. Overall, their accounts attest to the values of creativity, self determination, and interdependence growing from the experience of living with disability, themes that run throughout the book, and that, as Mary Grimley Mason notes, are important for all mothers, but especially for mothers with disabilities.

The book is organized according to the sequence of gestation, birth, and growth. Chapter One focuses on reproductive decision-making, pregnancy, and childbirth. Chapter Two centers on the issues of care giving in a child’s early years. Chapter Three explores the older child’s engagement with the outside world, and Chapter Four, family and community relations. Chapter Five provides a summary of the book’s major findings and themes, and Chapter Six, written by Linda Long-Bellil, gives an overview of public policies relating to mothers with disability. The audiences for this book—disabled women contemplating motherhood, social workers, and health care professionals—are directly addressed at the end of each chapter in a useful “Lessons to Share” list of tips.

As with any project developed from interviews, the book raises questions about methodology and representation. The interviewees include those of different races, generations, and classes (although more than a few have college educations and professional degrees). But they only represent a narrow range of disabilities—all physical. What this small sampling of women reports as difficult—for example, accessing social services, or the suspicions of neighbors and social workers that they might not be good mothers—would undoubtedly be even worse for mothers with intellectual or emotional disabilities. Their stories and the barriers they face need to be told too.

Second are questions of framing. Since many of these life narratives are collaboratively produced and presented in summary form, we don’t know the original inquiry questions or how they shaped responses. When we do encounter direct transcriptions of interviewees’ words, they come through as the liveliest and most disability-centric moments in the text—from Lorrie’s plea for more and better adaptive child equipment (40) to Donna’s assertion that being in a disability-majority culture at the Paralympics felt “empowering” (83).

Disconcertingly, though, word choice and phrasing sometimes seem to reinforce the view from what Rosemarie Garland-Thomson calls “normate” culture. For example, it is counter to the spirit of the ADA to say that disabled individuals need to adjust to their own “limitations” or “challenges” (29) rather than seek social accommodations for disability differences. In the same vein, to refer to the non-disabled as the “able-bodied” re-centers the able/not able binary, a move that disability studies scholar Simi Linton warns against.

Yet the book does evolve toward a social view of disability—that it is the interaction of a person with the social environment that can be enabling or disenabling, and these life stories testify to the benefits of many enabling social supports, such as doula programs, paid personal care attendants, co-housing, or living in a disability community.

As I mentioned at the start, these women’s experiences with health care providers suggest that the medical establishment needs to learn more about the lives and rights of disabled people. However, interactions with medicine were not all negative; some disabled women sought genetic counseling, for example, and the author concludes that its availability does not seem to “deter a disabled person from having children” (8).

These women also reported mixed interactions with another social institution: schools. Their life accounts include experiences of schooling before as well as after passage of the ADA...