As an undergraduate studying Economics and Philosophy, I was most fascinated by the intersection of economics and justice theories. I entered the AIF Clinton Fellowship wanting to see use cases of these theories at grassroots level, intending to use this experience as a launching pad to a PhD program in development ethics. I got much more than I asked for; I faced no shortage of ethical dilemmas in my work and personal life in Puducherry. The worlds of disabilities rights, feminist ethics, and women’s reproductive health are ripe with big important questions how we care for and support the freedoms of people as development professionals. In this post, I’ll explore just one case.
The Case of Women with Disabilities and Hysterectomies
Managing periods for your daughter with disabilities can be very challenging. In Puducherry, I saw first-hand the physical and emotional toll it took on mothers and caregivers. One mother had to change her daughter’s sanitary napkins multiple times a day, due to her child’s severe mental and physical impairments. She described the four or five days of her daughter’s period each month as excruciating. Her daughter would be in pain but unable to express it, instead throwing tantrums to eat and never sleeping through the night. Her mom dreaded the likely reality that she would be doing this for the rest of her life. Even more worrisome, she echoed the chorus of many other parents of not wanting to pass on this excessive burden to other family members after their death . Instead, caregivers of women with disabilities sometimes opt to get their daughter a hysterectomy.
Giving children with disabilities non-medically necessary procedures on their sexual and reproductive health system is highly controversial. In 2007, the case of six-and-half year old Ashley caused international outcry. Born with severe encephalopathy, Ashley’s parents decided to get her a hysterectomy and give her growth-stunting drugs to stop the development of secondary sex characteristics. Ashley’s case was deemed illegal and “The Ashley Treatment,” as her incident was coined, was protested by feminist rights groups, who argued it is sexual mutilation. Bioethics experts condemned the decision, pointing out that the problem is not with the sexual development of people with disabilities, but the country’s failure to provide them and their families with adequate support to manage their differently-abled bodies. Parents of girls with disabilities have argued that to give their daughter a hysterectomy is akin to eugenics. Seattle Children’s Hospital, which performed Ashley’s procedure, instituted a number of reforms including adding a disabilities rights advocate to their bioethics committee.
It is easy to see how forcing a young child to have a hysterectomy is an affront to her reproductive rights. Yet, even the most popular and robust philosophical arguments for a woman’s right to decide what happens to her own body does not clarify where women with disabilities belong in these frameworks. There were many supporters, namely other parents of children with disabilities, who saw the value in the Ashley Treatment, both for their children and themselves as caregivers. There have been multiple cases like Ashley that have polarized doctors, bioethicists, and the parents who themselves have different interpretations of what is important to providing the best care to their child. Many parents believe that their child will be more frightened of menstrual bleeding if they can never get them to understand what is happening with their bodies, such as children with severe Intellectual Disability (ID). They do not want to put them through the pain of menstrual cramps or PMS if it is not necessary. A common fear is that their daughters are vulnerable targets for sexual abuse, and that hysterectomies, mastectomies, or growth-suppressing drugs are unfortunate but important ways to protect them from violence and unwanted pregnancy or abortions. Caregivers of women with disabilities for whom a hysterectomy might be an enticing option face an impossible decision between protecting their child from further discomfort or harm, and making irreversible decisions to her body without her informed consent.
What Does (or Should) the Law Say?
A 2018 study did a comprehensive review of this question, specifically in the context of the United States versus India and other developing countries, so I will largely summarize their findings. International ethical guidelines generally discourage and frown upon “non-therapeutic hysterectomy” for women with ID, though it is technically medically safe . In the United States, legal guardians of persons with disabilities (PwD) have to obtain a court order to get sterilization procedures done, and these restrictions vary state-to-state . This approach provides space for each case to be decided giving consideration to each child’s unique case. But courts and ethics committees cannot of course predict the future. In some cases, the child grows up to gain a better understanding of her body and endures psychological trauma of forced sterilization, grieving the children she cannot have. Ultimately it is the PwD and their caretakers who must bear the agony of this lifelong regret.
Unlike the United States, most developing countries do not have “an active involvement of the State, or financial or training support for women with ID or their carers” when it comes to decisions on managing menstruation and other aspects of puberty for women with disabilities . While the court system is not perfect, it does provide some regulation to ensure the decision is made in the best interests of the PwD, and that they genuinely have such a severe disability that making reproductive health choices on their behalf is ethical. In India, the study noted that “hysterectomy to address the concerns of menstrual hygiene and unwanted pregnancy is accepted” from a cultural and societal lens. However, it is critical that India and other countries institute legal statutes or designate ethics committees to ensure parents who make this choice are reasonable in doing so.
Ethical Considerations for Reproductive Rights for Women with Disabilities
The first step to figuring out how women with disabilities are protected under the under the umbrella of women’s reproductive rights is to lay out all the factors that impact this decision. I’ve laid out a few based on my own experience and research with caretakers of women with disabilities in Puducherry, though this is by no means an exhaustive list.
Degree of Disability:
Hysterectomies and other non-therapeutic surgeries should only be considered for the most severe cases of ID or other extreme instances of disability. The majority of women with disabilities (WwD) grow to be mid to high functioning, and many can lead independent lives with some special assistance or technology. In my research, we found 28% of mothers believed PwD cannot get married and have children of their own [See Chart 1], however it is a myth that disability prevents someone from having a routine married life, including sex and childrearing. Moreover, therapeutic interventions for PwD, such as physical, speech, and occupational therapy, are effective forms of symptom treatment and individuals show a wide range of improvement. How functional a child with disabilities is or can be with treatment is not an easily determined or agreed upon measure. Medical professionals each have their own assessment tools, and are of course subject to their own biases. Parents might disagree to what their child will be capable of doing in the future, and this influences the decisions they make in the present moment. It is precarious to make a permanent and an irreversible decision on a child’s body without confidently knowing it will be what is best for her body in the future.