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 [End Page 1] 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. [End Page 2] Yet disabled women, who rank at the lower end of social and medico-legal power relations, know very well they have little choice and that their reproductive rights are still ignored and abused (Waxman-Fidducia and Wolfe 1999; see also Wardlaw's article). For example, disabled women around the world argue that "non-therapeutic"1 sterilization is a question for adulthood not childhood, constituting as it does an irreversible medical procedure with profound physical and psychological effects (Women with Disabilities Australia 2007; Steele 2008). Forced or "non-therapeutic" sterilization is acknowledged as a critical human rights issue in a variety of international contexts including the United Nations and within international disability and women's rights' forums. Yet disabled women and girls, sometimes as young as nine (Hammond 1993) all too often have no choice in this deeply bioethical decision, which will affect the rest of their lives (Dowse and Frohmader 2001).
Some of the "choices" that bioethics has brought are problematic for both disabled and nondisabled feminists, as Eva Feder Kittay demonstrates. After positive prenatal screening tests for abnormalities, women are often presented with only one option—abortion. For many disabled activists this choice brings back the collective memory of eugenics. The choice to abort post screening may have become "a choice too many." But it is a choice that we have to deal with. Kittay's discussion of the problematic of choice looks at the process of choosing and advocates that we "tread more cautiously and … more humbly in this new terrain." Coming from a different perspective, Tom Shakespeare (2006) in his widely debated book Disability Rights and Wrongs questions whether prenatal testing and the decision by parents to avoid the birth of a child with impairments equals a negative valuation of disabled people. The "choice" to abort may be the result of many factors, including the appalling lack of services and resources for disabled people in many countries, resource implications, and the fact that many women are committed to the long-term caring work for their disabled children.
Adrienne Asch, another disabled scholar and bioethicist, remains solid in her belief that "support for prenatal diagnosis and selective abortion contravenes the goals of people with disabilities for full acceptance and inclusion in our society" (2008, 352). Another emerging dilemma for bioethicists is the possibility that disabled women will be able to choose to abort a fetus that is considered "normal" in their quest to have a child with an "impairment," a child who is genetically similar to themselves. In a world where disabled people are accorded respect and choice, parents may wish to have a child with, for example, achondroplasia. Disability identities and belonging to disability communities may be threatened [End Page 3] when "genetic technologies promise to ultimately alter the trajectory of society by making disability obsolete" (Generations Ahead 2010, 5).
Ben Almassi explores another aspect of "choice" in his discussion of "transfeminism." In a poignant exploration of the critical interrogation of human sex and gender roles by transsexuals and the resulting implications for disability theory and practice, he suggests that we can extend the ethics of self-transformation to disability. In doing so, he takes us beyond the simplistic disability versus impairment debates of the social model into a more nuanced understanding of the embodied desires of disabled people. He argues that not "all of us must be satisfied with the modes of embodied functioning we currently experience and so limit our efforts for change to social policy and infrastructure alone." Fiona Kumari Campbell's work on "transhumanism" and technology (2009) takes a similar stand, arguing that disabled peoples' distinct relationship to technology cannot be ignored. The interrelationships between bodies and technologies are complex affairs that confound notions of normal and abnormal.
There is no doubt that disabled people, particularly in the wealthy countries of the global North, will increasing make use of new developments in techno science. Of major concern, however, is that the technological fix will only be available to some disabled people and that the power relations between those with access to resources and those without will widen. The bioethical debate must encompass the concerns of disabled people beyond the countries of the global North. Decisions made there that impact negatively on the people of the global South carry major ethical and moral implications for scholars and activists. For instance, war, the arms trade, and the exportation of pollution are all known to increase the numbers of disabled peoples in the poorer states of the South (Meekosha 2008).
Amanda Booher also addresses the theme of body augmentation or "enhancement" by looking at prosthetized bodies. From a Foucauldian perspective, she asks whether prosthetized women's bodies are the "penultimate docile bodies" that result from disciplinary powers both external and internal to the individual body, or are these bodies being normalized/enhanced to fit the wider society's expectation to ensure that disabled people strive to overcome their apparent lack of functionality? The relationships that disabled people can have with their prostheses may, in the final analysis, take many forms, but technological enhancements do not necessarily produce docility; "they are … bodies that challenge the docile body, that explode definitions of 'normal' that reinscribe ideas of norms." [End Page 4]
The continuing discrimination against and oppressive behavior toward disabled people is a major theme in critical disability studies. Jackie Leach Scully poses the important question as to why this theme should be of interest to bioethicists. In search for answers, she examines encounters between disabled and nondisabled people. She argues that disabled people need to take over management of these encounters in a cognitive, emotional, and physical way. There are a variety of ways disabled people manage these stigmatizing encounters. In accordance with Arlie Hochschild (1983), this management involves a significant amount of labor on the part of the disabled person, and the ethical implications are not usually considered. The key dimension "in the encounters between disabled and nondisabled people is the asymmetrical distribution of social power." These asymmetries can damage "the sense of self [and] would in turn have consequences for a person's capacity for genuine moral agency." Scully's paper argues that bioethicists that are making decisions about the prevention or, indeed, removal, of impairment must not be informed by the unthinking disablism that that allows these asymmetries.
A critique of the neoliberal tradition in the United States of individual rights leads us into another dimension of "choice" and "autonomy," that of the right to die. The right to die is predicated on the indignity of a perceived low quality of life for aged and disabled people. Margaret Wardlaw situates the right to die debate in the realm of negative rights—the rights that require no action on the part of others, such as freedom of speech and of religion. Yet she argues that the right to die is not only an illusion of choice but also "a right [that] could jeopardize freedom." For disabled people, the freedom to live as fully recognized citizens contributing to society requires a variety of accommodations and support services, but this is largely overlooked in the public and academic discourses of voluntary euthanasia. Here again the value and "quality" of the lives of disabled/aged persons remain the underlying raison d'être of the push for right-to-die legislation.
When we examine the relationship between feminism, bioethics, and disability, we need to pay attention to global dimensions. There are now more than 325 million disabled women and girls in the world, most of whom live in rural areas of developing or resource-poor countries (World Bank 2009). A detailed global picture of how gender and disability intersect is not available as data collection and research has been extremely limited and often clouded by factors that resist quantification, such as the feminization of poverty, cultural concepts of gender roles and sexual and reproductive rights, violence, abuse, and other types [End Page 5] of exploitation, such as child labor (ibid.). Bioethical debates around disability in the global North have barely begun to touch the issues facing disabled people in the global South. And on the other hand, some of the bioethical challenges discussed in this issue may seem of little relevance in countries where even the crudest prostheses and wheelchairs are unavailable, where disabled children do not live long due to lack of medical care, pharmaceuticals, clean water, or sanitation, and where there remains a high incidence of poverty among disabled people. The need to move feminist/disability bioethical issues into a transnational space is demonstrated by Nancy Scheper-Hughes's research on the trafficking of human organs (2000). In her research, bodies in the Majority world are reduced to commodities, but the disabling effects of the sale of body organs on the sellers, their families, and their communities have scarcely been addressed:
[The] seemingly self-evident first premise of Western bioethics would not be shared by peasants and shantytown dwellers in many parts of the Third World. The chronically hungry sugar plantation workers in Northeast Brazil, for example, frequently state with conviction, "We are not even the owners of our own bodies."(2000, 197)
The paper by Kavita Shah and Frances Batzer is particularly significant as it does address issues facing women in the developing world who become disabled as a result of infertility. Infertility brings devastating consequences, resulting in many women living as social outcasts. Shah and Batzer contrast this situation with that of the global North, where an infertile woman may receive "compassionate and competent medical care for her infertility." They argue that the high incidence of infertility in the global South is due to STDs, HIV, rape, and obstetric fistulas. Women with obstetric fistulas are particularly disabled as they experience a wide range of physical impairments and may even suffer renal failure. Moreover, their condition leaves them virtually excluded from society. This case study leaves us in no doubt that as feminists with an interest in bioethics and disability it is beholden on us to recast issues of bioethics in a more global frame.
Feminist and gender studies scholars are increasingly charting the important intersections between disability and bioethics. While disability scholars have disputed the positions of bioethics experts in the past, disabled women and their allies, in a rapidly changing landscape, are bringing new experiences and insights to bear. From a feminist standpoint, we bring new perspectives to fundamental questions of life and death, choice and autonomy, rights and values. This issue of IJFAB is making a special contribution to the complexity of bioethical decisions that are faced not only by disabled men and women, but also the wider society. [End Page 6] Importantly, disabled people are not lacking in agency, and they must be a part of the continuing narrative of bioethics in the twenty-first century.
Helen Meekosha is associate professor in the School of Social Sciences and International Studies at the University of New South Wales (UNSW) in Sydney, Australia. She has written and spoken extensively, from a feminist and a disability perspective, on gender issues, citizenship, human rights, social movements, the media and the body, and the production of impairment in the global South. Active in the disability movement for 30 years, she has been involved with "Women with Disabilities Australia" since it inception and as president in 2001 accepted the Australian Human Rights Award.
1. Non-therapeutic" sterilization is sterilization for a purpose other than to "treat some malfunction or disease": Secretary, Australia, Commonwealth Department of Health and Community Services v JWB and SMB, 1992, 175 CLR 218; 106 ALR 385.