Today, we observe the first ever Disability Reproductive Equity Day. There is an important reason we chose to observe this day in May: May 2 marked the 97th anniversary of the Supreme Court of the United States’ decision Buck v. Bell, which upheld a Virginia law authorizing involuntary sterilization of disabled people. The decision was an attack on bodily autonomy rooted in ableism, racism, misogyny and eugenic principles. It is a stain on the history of the United States. Yet, Buck has never been expressly overturned. Today, the disabled community reclaims this day to promote our bodily autonomy and dignity.
I know this will make many people uncomfortable, but disabled people have sex! We menstruate, we lactate, we experience pregnancy. But as a multiply disabled woman, it’s difficult to find medical providers who listen, understand, care and adequately support me – especially when it comes to my sexual and reproductive health care. It’s difficult to find support or information in a society where we do not see ourselves reflected. And it’s difficult to constantly have others second guess decisions we make about our lives and our bodies, including decisions about whether to have sex, use contraceptives, or have a child.
Painful Periods
When I started getting my periods, I experienced excruciating pain during ovulation, and my periods were extremely heavy and painful. I thought it was normal – everyone always told me periods would be uncomfortable. Discomfort and pain have been so normalized – but how much discomfort or pain is too much? When is it time to check in with a doctor? But it wasn’t normal. My OB/GYN placed me on birth control pills, and that was the end of the discussion. I was told that was the sole treatment option. Access to contraceptives is incredibly important, especially for disabled people. But the birth control pills did not completely address my pain or concerns.
Beyond my ovulation and menstrual pain, I could never wear tampons due to the extreme discomfort. When I began to have penetrative sex, it was incredibly painful. At first, I thought that was normal too – or maybe I was doing something wrong. Evidently, that was not typical either. It was not until I was almost 30 years old that I was diagnosed with pelvic floor dysfunction and endometriosis. And I learned I had other options for managing my pain besides birth control pills. I am not unique in my experience. On average, there is a delay of about 4 to 11 years between symptom onset and diagnosis of endometriosis. Lack of research funding for conditions that disproportionately impact women’s reproductive and sexual health, lack of training for medical providers, lack of public education and other barriers contribute to this pattern. Only a handful of doctors in the country – and even fewer who accept insurance – focus on vulvar health, pelvic floor health or endometriosis.
Sex Miseducation
Because of my pain, the sex education I had received made me feel inadequate. Many disabled people do not even receive sex education at all due to assumptions about our interest in sex or ability to consent to sex. With the pain of penetrative sex, I felt ashamed – like I was failing my partner. But nearly three out of four women experience painful sex at some point in their lives. We are taught penetrative sex is the only way to feel pleasure, but that simply is not true. In fact, only 18 percent of women surveyed in a 2017 study experienced orgasm from penetrative sex alone. Sex education often fails to address these realities. I certainly did not ever see myself or my needs reflected in my sex education.
Missing from the Narrative
I often fail to see myself reflected in the media when it comes to pregnancy and abortion, too. Both abortion rights advocates and anti-abortion activists have used disabled people to make political points about abortion, all without consulting disabled people or reflecting the complexities of the issue for us. The anti-abortion movement claims to speak for all disabled people, weaponizing the existence of disability-selective abortion to advocate for bans on all abortion. The history of the pro-choice movement is also complex. Activists like Margaret Sanger, who founded Planned Parenthood Federation of America, embraced eugenic ideologies. (It is important to note that Planned Parenthood denounces this history and Sanger’s eugenic philosophy). Even today, though, the value of disabled people’s lives is still sometimes diminished in arguments in support of abortion access – such as when alluding to disability-selective abortion.
Maternal Mortality Risk
Ultimately, pregnant people should have the ability to decide what is best for themselves – and that goes for disabled pregnant people, too. Far too often though, disabled pregnant people’s access to needed medical and abortion care is undermined, with disastrous consequences. Disabled women already face 11 times the risk of maternal mortality, compared to nondisabled women. We are accustomed to losing friends and comrades too soon – often due to a lack of affordable, accessible, quality and culturally and linguistically congruent health care. A lack of access to reproductive care, including abortion, is one more reason I may lose my friends too early.
If I ever became pregnant, it could be incredibly dangerous and life-threatening at worst and exacerbate my chronic health conditions at best. As a person with myotonic dystrophy, pelvic floor dysfunction, gastroparesis and a CVS-receipt length list of other medical conditions, I am at an increased risk of complications, some of which may even be fatal. Should I require surgery of any kind, anesthesia itself can cause serious, even life-threatening, complications for someone with myotonic dystrophy. I am blessed to live in Maryland – a state where my access to abortion care is not so limited. But what happens if I have to travel to a state with abortion restrictions and experience an ectopic pregnancy? What happens if I have a miscarriage – a very common and distressing experience among pregnant people – in a state which has criminalized it? I reflect on those who have faced criminal charges for their miscarriages and other pregnancy complications, especially the examples we see in the media, and worry that I live in a world where I may experience these challenges in the future as well.
Disabled people, particularly disabled women, disabled people of color, LGBTQI+ disabled people and other multiply marginalized disabled people, contend with these questions, fears and barriers every day.
Today, I feel validated and empowered to know that I am not alone. We deserve access to affordable and congruent sexual and reproductive health care. We must be able to make our own decisions about if, when, and how to have children. Disability Reproductive Equity Day should serve as a potent reminder that – our lives are valuable, and we must assert our power to direct them.
