This is the second in a two-part reflection on some of the issues brought to mind by a September BBC news story, Judge Approves Man’s Sterilisation in Legal First. (See part one for a synopsis of the story.)
In part one I listed three reasons why many people believe that adults with intellectual and developmental disabilities (I/DD) should not have sex or even be in romantic relationships at all. These are:
- That they should be sheltered from sex because they are essentially children.
- That people with I/DD having children would lead to more people with I/DD.
- That people with I/DD should not have children because they would expend public resources.
I discussed the first issue in my previous post; here I will address the other two.
2) CHILDBEARING & HEREDITY
Concerns about childbearing and heredity dominate most discussions about people with I/DD pursuing romantic relationships, sex, and marriage. Dave Hingsburger, a therapist, educator, lecturer, and author who advocates for the sexual rights of people with I/DD, observed in an interview that whenever he spoke with people outside the disability rights community about sexuality and disability,
“[T]he issue that always comes up is the issue of parenting: What if they have a baby like themselves? There seems to be this incredible fear that if developmentally disabled people engage in sexual behavior, one of them is going to get pregnant and the child is going to have a disability, and oh my god what a tragedy.”
The anxiety Hingsburger and others encounter in their work assumes that I/DD are the result of a biological mistake that people should avoid. Basically, that an ideal world would not include I/DD.
This perspective, understandably, though often unintentionally, hurts and offends many people with I/DD and many in the disability rights community as a whole. This viewpoint boils down people’s richly complex life experiences and identities into a single characteristic. It also assumes that people with I/DD have a lower quality of life and less contentment than people without I/DD, an assumption much research over the past 30 years debunks. The disability rights movement, and its critique of prenatal testing, struggles to overturn these beliefs in the medical and social service worlds as well as in the general population.
Many activists, advocates, and scholars object to the medical model of disability that defines all disabilities as disease. This model undergirds the perspectives above by suggesting that the challenges people with I/DD and other disabilities face come from their “abnormal” conditions. Activists like historian Paul Longmore counter that “prejudice is a far greater problem than any impairment; discrimination is a bigger obstacle to overcome than any disability.” The disability rights movement stresses that social stigma and lack of full accessibility cause far more problems than the conditions themselves.
To add another layer to this, little evidence suggests that most causes of I/DD are even hereditary. Doctors can find a specific reason for I/DD in only about 25% of cases, and for those 25% only a few are hereditary (though more can now be detected prenatally).
Concern about people with I/DD having children also includes worry that individuals who can’t fully care for themselves won’t be able to care for a child. This is a legitimate apprehension, but is too often applied indiscriminately to all people with disabilities. Disability varies dramatically from person to person and family to family and, like so many other things, should be considered compassionately on a person-by-person basis. Groups like Autism NOW (Succeeding As a Parent with a Disability) and The Arc (On His Own Terms) have worked for years to advocate on behalf of parents with a disability, who can be just as successful parents as anyone else.
3) PUBLIC RESOURCES
As I suggested in my previous post, contemporary ideas about people with I/DD being in romantic relationships and potentially having children stem from a long, troubling history of coercion and mistreatment.
The eugenics movement thrived in both the United States and England well into the mid-twentieth century. Eugenics advocates helped make involuntary sterilization a common and widely accepted procedure for trying to prevent the spread of hereditary “defects” (anything from epilepsy to criminality to intellectual disability) while reducing the number of people institutionalized at government expense.
At its heart, as we’ve written here on Nursing Clio before, eugenics aimed to solve social issues and save public expenses by controlling reproduction based on the accepted science of its time.
Scientific developments in the mid-20th century replaced the simplistic understandings of heredity that the older eugenics rested upon, weakening the justifications for widespread sterilization. Patient- and human-rights groups also bolstered defenses against involuntary sterilization in the latter half of the 20th century. But compulsory sterilization laws stayed on the books into the 1970s, and the desire to address social issues, both real and perceived, by using science to control the outcomes of reproduction remains.
Alexander Capron, professor of law, medicine, and ethics at the University of Southern California pointed out, for example, that, since public health programs are most often evaluated on whether they save public funds, “the implicit justification for supporting genetic screening is that in the end fewer babies will be born who need social and medical support.”
But there’s another side to the issue. Though entangled in a long history of involuntary surgery, sterilization can also be an effective means of voluntary birth control. Historian Johanna Schoen, for example, found evidence that while states sterilized many people against their will or without their knowledge during the eugenics movement, other people sought out these procedures as a reliable form of birth control at a time when contraception was difficult to come by, especially for poor or single women.
States and institutions forced sterilization on some individuals at the same time they denied these same procedures to others who would have them voluntarily.
A strange confluence of sterilization abuse and advocacy emerged in the early 1970s. The abuse often occurred in state institutions and prisons and targeted women of color and people in poverty. The advocacy, called “Operation Lawsuit,” took place in courts and legislatures across the country, led by an interesting array of groups including the ACLU, the American Medical Association, the Association for Voluntary Sterilization, and Zero Population Growth.
As Alexandra Stern has argued, coerced sterilization between the late 1960s and the mid 1970s in California and elsewhere highlights the continued potency of arguments in favor of sterilization: arguments based on protecting public health and resources. The ideology of individual freedom so valued in US public discourse tends to fall apart when public funds are on the table.
Discussions about sterilization take place in the context of this not-so-distant history. These issues reverberate in social and cultural assumptions about disability and difference, the use of public resources, reproductive rights, and informed consent. They persist in present-day decisions about sterilization, genetic testing, and reproductive technologies.
Perhaps what the BBC story about DE and PQ should remind us is that each situation is individual and should be approached in a compassionate, culturally competent manner. Medical therapies can be used in both positive and negative ways — it depends largely on whether they are used in the individual’s interest and with fully informed consent (when possible). There are no easy answers to these questions. It’s important that we practice having open conversations about these issues so that we don’t let uninformed assumptions govern actions that will have significant and lasting negative effects. I hope these two posts illuminated some new perspectives, and I look forward to hearing more viewpoints in the comments.
1. For an excellent summary of this research, along with essays on both sides of this debate, read Erik Parens and Adrienne Asch, eds., Prenatal Testing and Disability Rights, Hastings Center Studies in Ethics (Washington, DC: Georgetown University Press, 2000).
2. “Intellectual Disability,” MedlinePlus Medical Encyclopedia (US National Library of Medicine, NIH, March 22, 2013), http://www.nlm.nih.gov/medlineplus/ency/article/001523.htm.
3. Johanna Schoen, Choice & Coercion: Birth Control, Sterilization, and Abortion in Public Health and Welfare (Chapel Hill: The University of North Carolina Press, 2005).
Feature image: “Disability is not Inability,” Some rights reserved by The Advocacy Project.