Women with Disabilities and Menstrual Hygiene: An Ethical Evaluation

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 [1]. 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 [3]. 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 [4]. 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 [5]. 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.

Chart 1: Responses to the question “Can PwD get married and have children of their own?”
Economic Limitations:

Poverty greatly exacerbates the difficulties of navigating a world that is not built for or considerate to differently-abled bodies. The cost of medical care for a child with disabilities can be tremendous. By one study, the cost of childhood disability, including direct costs and indirect loss of income due to care, was $30,500 annually. In the United States, the Medicaid health insurance program spends seven times more for a child with disabilities than enrollees who are non-disabled [2]. In India, government assistance given to persons with disabilities is often non-financial—such as specific medical devices or special allowances—and vary per state. There are unavoidable and artificially inflated costs of menstruation, puberty, and caring for a woman with disabilities. Poor families are relentlessly limited by their financial means, and the health care of their children is not exempt from this limitation.

Even with government aid, low-income families or those living in rural areas, such as the families I worked with in Puducherry, must surmount enormous challenges to provide health and education for their child with disabilities. Capitalism has its role in the varying quality of products and services persons with disabilities can access. In the school for special-needs children I worked, most of the wheelchair-bound students did not have motorized ones. I saw one girl’s father lifting her from her wheelchair to place her into the school bus each day because she could not manually push it up the ramp. She was already taller and heavier than her father, and yet he would do this every day to ensure she went to school.

Quality of Life:

Quality of life is a measure used frequently to discuss difficult medical cases. A PwD’s quality of life is impacted not only by their physical and/or intellectual differences, but the myriad of difficulties that come with being differently-abled in a world created by and for abled-bodies and minds. For example, the common fear that a child with disabilities is highly susceptible to sexual abuse is warranted; sexual abuse of women with disabilities is rampant, and holding their abusers accountable is difficult because many PwD cannot provide testimony that stand up in the courts definition of beyond reasonable doubt. It is understandable that parents of PwD see virtue in preventing sexual abuse and unwanted pregnancy, which would likely lead to the trauma of abortion, through sterilization and growth-alternation of sex characteristics.

Quality of life as an indicator is also intricately tied to culture and community norms. For example, in the United States, having a good quality of life includes clean tap water but in India, safe-to-drink tap water is not expected by anyone regardless of how well off they are. In India, especially rural regions, even menstruating as a non-disabled person can be an awkward, cumbersome spectacle. Sanitary napkins are kept behind the store counter, so you have to ask the owner, usually a man, to give you one. Then, surreptitiously hide it under your clothes and sneak it into the bathroom. Disposal is a major issue both socially and environmentally. The tradeoff between a medical procedure and having a PwD adhere to these, albeit needless, social mores around menstruation is less straightforward than it seems.

Though the choice to give a girl with disabilities a hysterectomy or other life-altering procedures is an ethically dubious one, the mothers I met in Puducherry were not bad mothers for considering it. A far cry from it. They have dedicated their lives to ensuring their daughters get the best lives possible, free from harm. More than half of the mothers in our program were single parents, often because their spouse did not want to keep their child due to disability [See Chart 2]. The mothers refused to give their child up, and many struggle immensely to make ends meet. I still grapple with the questions they asked me, not mincing words: “when I die, who will do this for my daughter? Who will clean up her menstrual blood, bathe her, protect her as I do?”

It can be frustrating to debate ethics, to put in all the effort to deconstruct the question, only to arrive at no answer. But we cannot wave away the question of sexual and reproductive rights for women with disabilities simply because there are no good answers. Moreover, the questions and considerations of how to go about this work honorably can often be better guiding forces than the answers themselves. This is the very least we owe these mothers, and all the communities we serve, to not turn a blind eye to the impossible realities of their lives and families. There may never be answers, but perhaps the best we can do is help carry the burden of figuring this out together.

Chart 2: Martial status of caregivers of women with disabilities in rural Puducherry

In-text Citations:

[1, 3, 5] Márquez-González, Horacio et al. “Hysterectomy for the Management of Menstrual Hygiene in Women With Intellectual Disability. A Systematic Review Focusing on Standards and Ethical Considerations for Developing Countries.” Frontiers in public health vol. 6 338. 28 Nov. 2018, doi:10.3389/fpubh.2018.00338

[2] https://www.kff.org/medicaid/issue-brief/medicaids-role-for-children-with-special-health-care-needs-a-look-at-eligibility-services-and-spending/

[4]. https://www.theatlantic.com/health/archive/2013/09/sterilizing-a-child-for-a-better-life/279765/

Srisruthi "Sri" Ramesh is serving as an American India Foundation (AIF) Clinton Fellow with Satya Special School in Karuvadikuppam, Puducherry. For her Fellowship project, she is creating a training manual on menstrual hygiene management and sexual reproduction to educate adolescent girls with disabilities, their parents, and their care givers. Sri is a San Francisco Bay Area native with family roots in Chennai, Tamil Nadu. She is passionate about ethics, gender, and development in South Asia. While in college, Sri founded a student organization for careers in social impact and was awarded a university fellowship to work at Equal Community Foundation, a Pune-based non-profit focused on gender equality. After graduating, Sri worked at Ernst & Young and later spent a month reading and writing on an island in the Pacific Northwest. She enjoys cooking and baking, reading historical fiction, and doing armchair philosophy with friends who will indulge her. She is very excited to be a part of the AIF Clinton Fellowship community, explore new places in India, and improve her Tamil. She hopes to pursue research on development in South Asia after her Fellowship year.

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