by Mia Ives-Rublee
It is easy to feel alone when dealing with issues around reproductive health. As a society, we are taught to be uncomfortable with the topic. The silence around this topic starts at home, with parents being uncomfortable talking to their kids about their reproductive and sexual health and this reticence affects our classrooms, where teachers often skirt the topic with abstinence only education. This is dangerous to all, but even more so to individuals with disabilities. Society often views disabled women as asexual and incapable, and because of this, they are often not exposed to even the most basic discussions of sexuality and reproductive health. This can leave disabled people susceptible to sexually transmitted diseases, unplanned pregnancies, and sexual abuse.
Growing up, I hardly ever saw disabled women on television or in the media as capable of having sex or being parents. Portrayals of disabled people – even if they were main characters – are often sidelined – with little attention paid to their development, or the opportunity for these characters to be challenged with the usual fare of relationships, parties, and (gasp) sex. I was lucky that my mother was upfront about the importance of sex education and reproductive health, even taking my sister and me to classes and our first gynecological appointment. Many disabled women are not so lucky.
Even so, as a disabled woman, I have only received one Pap smear and have been to the gynecologist a handful of times. Numerous healthcare professionals told me they didn’t have a way to complete many of the tests needed to screen for gynecologic cancers and other illnesses. They often gave me poorly researched explanations around the issues I was having without completing a full exam. This frustrated me so much that I have had to continuously look for new clinics in hopes of finding a more capable provider. Issues such as social stigma associated with discussing sex and disability, the current political climate, and a reduction of choices in reproductive health clinics will likely cause many women with disabilities (myself included) to continue to receive inadequate healthcare advice.
It is extremely important for disabled women to talk about their experiences around reproductive health in order to address the cultural barriers around our health needs. These candid discussions help inform policy makers and providers to better understand how certain policies could exclude women from care. I spoke with four disabled women advocates who each shared the issues they have experienced due to inaccessibility, discrimination, and lack of basic training around disability, when attempting to access quality health care.
Lack of Funding
The new domestic gag rule that strips funding from reproductive health clinics that provide abortions or referrals to clinics that provide abortions will severely affect disabled women’s ability to obtain reproductive healthcare. Numerous clinics will likely have to close and serve fewer patients if the new Title X rule goes into effect. Disabled women are a vastly underserved population when it comes to reproductive healthcare and having fewer options will continue this trend. Studies indicate that disabled women are less likely to receive mammograms and pap smears, which has likely contributed to higher rates of gynecologic cancer mortality. Due to lower rates of employment, many disabled women must rely on reproductive health clinics that receive Medicaid and/or Title X funding. Disabled women’s ability to receive appropriate reproductive healthcare is often hindered by financial issues, transportation, clinic accessibility, and the clinics disability competence.
Physical Accessibility
Accessibility is a huge issue for disabled women. We often need health clinics that are close by or on an accessible public transportation route. This can be extremely difficult to manage as many clinics either don’t accept our insurance or don’t provide financial assistance. Araceli (whose last name is omitted for confidentiality), a disabled Latinx woman with Spina Bifida and Polycystic Ovary Syndrome, went to over four clinics to try to access care. The first three clinics with accessible exam tables she went to told her they no longer accepted Medi-Cal after her first visit. She finally landed at a gynecologist near her, but the office didn’t have an accessible exam table. “I look at the Medi-Cal providers and none of them are accessible and none of them are accepting new patients.” Araceli stated with frustration. “[The one I’m going to is] like the only one left. None of them are nearby. Because I put that radius, that mile radius, it has to be within 10 miles. I can’t really go 20 miles to see a [gynecologist] because what if an emergency happens? I’m going to have to be able to reach them on my own. Oh my gosh, it’s tough. It’s exhausting talking about it.”
Having an accessible exam table is extremely necessary for disabled women in order for them to receive a thorough gynecological exam. Invented in 1997 by a disabled woman who was also a gynecologist, the Welner exam table was the first of its kind that could lower to the ground, making it easier for patients to transfer. However, it is still very rare for reproductive health clinics to have them. I personally have never seen an accessible exam table at a reproductive health clinic. Kings Floyd, a disabled queer woman with Muscular Dystrophy, has had a similar experience, stating, “I had my first Pap smear way late because the first doctor that I went to when I moved to Maine did not have an accessible exam table that would allow me to get on the table and recline.”
Communications Access
Communication access remains another accessibility hurdle for Deaf women and women with developmental disabilities. Rachel Roberts, a Deaf woman with Ehlers-Danlos Syndrome, has had numerous difficulties getting American Sign Language interpreters for her appointments. During one visit to a reproductive clinic, she was getting an IUD for the first time. She stated, “During the procedure, I remember experiencing a lot of pain and being clueless as to why, what they were doing at that moment, or at what point in the procedure I was. I didn’t know when I could expect it to end. They were talking to me but forgot I couldn’t hear them and then when I told them I needed to lip-read them, they chose to stop talking instead. I was glad to have been able to get services but I felt hurt and really dejected when leaving because I had no knowledge of what had happened or what to expect other than what I had found on the internet.” Communication is key to making women feel welcome and safe during reproductive health exams. If we aren’t able to understand what is going on, we can be traumatized and feel violated.
Ableism and Inherent Bias
Disabled women also experience ableist opinions from reproductive healthcare providers. As with the rest of society, providers can have very ableist mentalities when treating disabled women. Some assume that women with disabilities are not interested in having sex, nor capable of having children. Often women with disabilities and the knowledge of their own bodies is not considered without reviewing our medical charts or completing an examination, while other women are taken at their word. This poor attitude is further complicated by societal misconceptions about that ability of individuals with disabilities to be successful parents so, often abstinence or even forced sterilization will be the extent of suggested reproductive care.
This attitude hurt Floyd’s chance for accessing good care when she went to one appointment where a doctor didn’t believe she could have sex. “I have been asked if I was joking when I said I was sexually active, as if this thought was ridiculous. “Far from a one-time incident, many of the other women I interviewed shared similar stories. Roberts stated, “I still have sex, I still have a vagina and female parts and I still need reproductive health care even though society sees me as a non-sexual being… I would like to be seen as a whole human being who still needs reproductive services even though I am a deaf, lesbian, wheelchair user.”
Disabled women, especially black disabled women, often face racial and ableist bias from providers that have resulted in higher rates of mortality. Heather Watkins, a black disabled woman with Muscular Dystrophy, almost joined in that statistic when she interacted with providers who didn’t believe her when she went to a clinic to confirm a pregnancy.
Watkins went to a clinic to confirm a pregnancy which was done by urine test, but an embryo was not detected by ultrasound. This concerned both the technician and physician. However, when Watkins pressed further about the concern, the physician said they’d run more tests the following week and sent her home. A few days later, while awaiting follow-up visit, she started cramping, blacked out, and ended up being rushed to the emergency room. “I actually had an ectopic pregnancy, needed emergency surgery, and could have bled to death internally as my Fallopian tube had burst which could have taken my life.”
Watkins story is not singular and the lack of good faith from medical professionals because of racism and ableism can lead to poor medical care and access for many communities of color. People of color often hold some distrust of medical establishments due to long standing racial and cultural biases. Research shows that Black, Latinx, and Asians all show higher levels of distrust than Whites.
Even someone as famous and well-connected as renowned athlete Serena Williams found herself susceptible to the racism and ableism that can permeate reproductive healthcare settings. In an interview with Vogue magazine, Williams talks about how she almost died because a nurse didn’t believe her when she stated she was having a pulmonary embolism after her C-section. While she knew something was wrong and immediately communicated it to her medical team, it still took significant insistence from her before she was believed. Unfortunately this is a regular story of many women of color. Often, disabled women of color are left to wonder if their experiences are due to racism, sexism, or ableism. In these moments, we can clearly identify when something is going wrong, but can’t fully explain why it’s going wrong. This creates a cycle of distrust in which a person may not be connected to care, and is less likely to continue to seek out the care that they will need because they are not sure if they will be able to effectively communicate and be believed by medical professionals.
Araceli, who went to three different clinics that no longer accepted Medi-Cal after her first appointment, questions whether it was because of her race that they stopped accepting Medi-Cal. Not having a specific answer raises questions that continue to shape her ability to access good care with doctors what know and respect her as an individual
“Soon after my first appointment with them, they didn’t accept [my insurance] anymore. And I’m like, are they racist? …Are they saying like wow, brown people are coming? [The clinics] were in very nice areas.. Do they sense that I’m not from here? “
With a limited number of reproductive clinics that are willing or even able to provide care for disabled women, there’s a fear that speaking out could result in a loss of the few resources currently accessible to us. Watkins spoke out when she went to a clinic because they didn’t have an accessible exam table. She filed a complaint with the patient advocacy department and included resources regarding accessible medical equipment for persons with mobility disabilities. The clinic immediately added a hydraulic exam table. While Watkins was successful in this instance, others may not feel they can advocate on this issue. Araceli expressed her hesitance to challenge the system by stating, “I’m scared to say anything to these people. I’m scared that they’re going to one day not accept [my insurance] because `that one crippled girl’ spoke up about the non-accessible exam table and they kicked her off because she was causing [trouble].”
We, as a society, must seriously re-evaluate how we treat marginalized women’s healthcare needs, especially disabled women and women of color. The horrible experiences that Araceli, Watkins, Roberts, Floyd, and I face are not rare. Reproductive healthcare, and healthcare in general, should provide adequate treatment to all women in an accessible manner without inherent bias.
The solutions to fix these issues are clear. Healthcare professionals, policy makers, and community members need to pay attention to disabled women and women of color’s experiences and believe us when we say we are in pain. Society needs to increase funding for research around reproductive/sexual health and disability, update reproductive health clinics with accessible equipment, hire disabled women and women of color as reproductive health providers and researchers, and better train healthcare providers to reduce instances of ableism and racism.
Mia Ives-Rublee is a disabled Korean American who founded and coordinates the Women’s March Disability Caucus. She holds a Master’s Degree in Social Work and has extensive experience working within the disability community. Currently, she is a consultant companies and non-profits, helping them create disability inclusion and accessibility plans. She is also a public speaker and writer. Follow her on twitter or Instagram @seemiaroll.