Reproductive Health Care Scarce for Disabled Women

Credit: marco monetti on Flickr, under Creative Commons (CC BY-ND 2.0).

(WOMENSENEWS)– Historically, the medical community and general society considered disabled women–those who were born with genetic anomalies, or acquired disabilities associated with diseases such as cerebral palsy or polio, or became disabled due to accidents–“unfit” for sexual relations and for motherhood.

Disabling traits or characteristics were typically associated with biological degradations and social problems that society believed should not be transmitted. Girls and women with Down syndrome, muscular dystrophy, mental illnesses and other genetic and nongenetic disabilities were often denied sex education and gynecological health services. Many were institutionalized or otherwise sequestered, and some were sterilized.

Surprisingly, after a generation and more of civil and human rights movements, as well as the rise of the disability rights movement, many in the medical professions and in the population at large still deem disabled persons unsuitable for sexuality and reproduction. In this cultural context, women with disabilities often report being discouraged from becoming mothers because their physicians and others say that, as disabled parents unable to care for their children adequately, they would be creating additional burdens for their families and communities–and for their children.

Many women with disabilities report that their health care providers transmit negative attitudes toward the reproductive capacities of women with disabilities by not asking about their sexual lives and neglecting to ask about or assess their reproductive health–for example, by failing to perform full, regular pelvic examinations.

In addition, women with disabilities may have poor access to mobility devices, public transportation, medical buildings with handicap accommodations and health care. They may lack access to computers or have limited contact with other women with disabilities and consequently be unable to acquire the reproductive health information they need. They may be uncomfortable communicating about sexuality and its outcomes, including reproduction, because of stigmas and taboos often affixed to the association of disabled persons and sex.

Altogether, women with disabilities report that these attitudes and access issues create a hostile environment in which they attempt to define, claim and enact reproductive rights.

A Growing Movement

Even given this cultural context, the disability rights movement has been a growing force, objecting to traditional views of the bodies of women with disabilities and their sexual and reproductive possibilities. Through various organizations, including the Disability Justice Collective, the disability rights movement has advocated effectively for the reproductive rights of women with disabilities and, in the process, has created perspectives and language that aim to fuel the reproductive rights claims of individual women with disabilities and reshape mainstream thinking about these matters.

In the United States, most women expect the law to protect their ability to make reproductive choices. At the most basic level, they expect to be able to have a choice about whether and when to get pregnant. Many also expect to make a choice within the first trimester of pregnancy about whether to stay pregnant.

Increasingly, the fertility industry and some medical practitioners, building on the consumerist lingua franca that characterizes this domain, are presenting additional aspects of reproduction as “choices,” a development that is having significant impacts on ideas about disabled persons and on the experiences of people in disability communities.

For example, women undergoing in vitro fertilization and other forms of assisted reproduction go through a process of selection of their “best” embryos to maximize the chances for a good outcome and to avoid what the industry often calls “the devastation” of giving birth to a baby with a genetically based anomaly. When pregnant women undergo ultrasound testing and amniocentesis, they are entering into another process that depends on “choice,” this time the process of de-selecting and aborting fetuses carrying genes associated with disabilities such as Down syndrome, spina bifida, sickle cell anemia and many others.

Search for ‘Perfect Baby’

This new frontier offers the possibility for pregnant women and their partners to make choices for sex selection or to choose other traits and characteristics they value or want to avoid as they “design” their new family member.

All of these processes are presented and can surely be experienced as “individual choices” made with no considerations beyond the preferences of the parents. Yet disability rights activists point out that these choices, like all choices, are made within a social context. In this case, the choices express a high valuation of some kinds of bodies and the devaluation of others which, if they occur, bring disappointment or worse to parents and others. These advocates make the point that participating in some of these processes is now more than just a choice; ultrasound and amniocentesis have become virtual responsibilities for pregnant women beyond their early 30s. Now implicitly, even explicitly, ever-larger percentages of pregnant women and their partners are affirming their immutable preference for a “perfect baby.”

These developments, according to those concerned with the dignity and human rights of disabled persons, are contributing to the isolation and indignity of disabled children and adults in U.S. society today.

Some proponents of the human rights and reproductive dignity of disabled persons have described a central paradox they face when supporting a woman’s right to make reproductive decisions, including the right to have an abortion, while objecting profoundly to the eugenic basis of many of these decisions.