The complex balancing act of choice, autonomy, valued life, and rights: Bringing a feminist disability perspective to bioethics

Disabled women were absent for many years from the discipline that has become known as women and gender studies. This field of study had its origins in the late 1970s following the second wave of feminism. In the latter decades of the twentieth century, disabled women and their allies introduced the necessary task of exploring disabled women's embodiment to the wider feminist community. A wealth of research now exists that incorporates disabled women's bodies into a range of disciplines: from literature, film, art, social sciences, geography, and the environment to many other areas of scholarship. Indeed, many of the themes covered in this special issue have been addressed in different contexts in the disciplines mentioned above. In the following pages, a feminist/disability perspective is brought to bear on one more frontier: bioethics. So how do we begin to rewrite the agenda of how a disability bioethics might appear—where the disabled person is a reproductive subject, has a valued life, and is accorded a good measure of choice, autonomy, independence, and dignity? And how can feminist theoretical frameworks assist in this task?

Disability and gender come together in a set of social relations in which individuals and groups act. Both disability and gender involve relationships with bodies. But it is not simply a matter of biology. Sometimes our bodies are objects of social practice; sometimes we are agents in social practice (Connell 2009). Sometimes we may be both agents and objects at the same time, as Amanda Booher describes in her discussion of prosthetized bodies. Social practices construct our understanding of disability and gender. Many of these practices are driven by bioethical considerations. Social embodiment is the process by which disabled women live in the world as agents and objects (ibid.). In Germany, as Ute Kalender points out, even though the law proscribes sterilization, some disabled women are prevented from becoming mothers as a result of other more subtle pressures from the medical and welfare professions. Teresa M. Segal describes how fertility clinics in the United States discard all embryos that are considered "abnormal," thus removing the possibility that women (whether disabled or nondisabled) could "choose" the type of child they would produce; that is, they could choose to transfer an "abnormal embryo." These two social practices are examples of the process whereby the meaning of gender and disability is constructed.

We need to place this issue of IJFAB in the historical context of writing by feminist disabled women in the early 1980s. Anne Finger and Marsha Saxton were among the first disabled women to tackle the topic of feminism, bioethics, and disability. Finger put forced sterilization on the feminist agenda, raised issues about fetal diagnosis, and dealt with fears that women have of giving birth to a disabled child (1984). More than two decades later, these issues are still with us. In the same volume, Marsha Saxton (1984) discussed prenatal genetic screening and argued that genetic professionals need to learn more about disability, but that in the final analysis "we must regard ourselves as directors of our own needs" (ibid., 309). The work of these two authors, along with the writings of Michelle Fine and Adrienne Asch (1988; Asch 1999), was pathbreaking, as, in one sense, they set the scene for this special issue. While the authors here may cover similar questions, it is from a radically changed space in which reproductive technologies have advanced considerably, where medical intervention in changing bodies is commonplace, and where advances in bioethics have given us in the global North much more choice, as IVF, surrogacy, egg and sperm donation, and acknowledgement of gay and lesbian parenting have opened up new options.

But choice for many, if not all of us, remains an illusion, as the contributors eloquently demonstrate. Neoliberalism and individualist ideologies perpetrate the myth of choice by suggesting that we have options as never before—in work, family formation, education, and lifestyle. Reading the popular media suggests that women of today have much greater choice than our mothers and grandmothers. Yet...