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The Intersectionality of Disability and Reproductive Justice, Access, and Policies: An Interview with Sarah Skeels

Image via Newport This Week

Sarah Skeels is a Professor at Brown, a researcher, an activist, and a world-class sailor. Skeels holds a BS in Exercise Physiology from the University of Virginia and an MPH from the George Washington University School of Public Health, with a focus on health promotion/disease prevention and disability. Skeels serves on the Rhode Island Governor’s Commission on Disabilities, teaches one of the only courses at Brown focused on disability, “Pathology to Power: Disability, Health, and Community,” is a Consultant with the Boston Medical Center Spinal Cord Injury Model Systems Program and Health Disability Research Institute at Boston University, and is a member of US Disabled Sailing Team. Her research focuses on peer-to-peer interactions and empowerment programs for people with spinal cord injuries.

Yuliya Velhan: Can you talk a little bit about your career pathway? 

Sarah Skeels: I completed my undergraduate degree in 1989 at the University of Virginia. After graduation, I worked in the rehabilitation department at the National Institutes of Health. I planned on being a physical therapist and was accepted to a graduate program. About two months later, I was training for a triathlon and was involved in a car accident, which caused a spinal cord injury. As a result, my admission was rescinded. I wanted to make an impact in healthcare and the way it’s delivered to the disabled community, hence I decided to shift my focus to public health. I started focusing on health promotion and disability. I came to Rhode Island to work for a nonprofit that ran summer programs for children with disabilities and got involved at Brown with a postdoctoral fellow. This led to the creation of the “Pathology to Power: Disability, Health, and Community” course.

YV: What have been your experiences receiving reproductive care? 

SS: When my partner and I decided to have a baby, I knew I had to find an OB/GYN who would listen to me, which was more difficult than it should have been. Even after meeting with multiple OBGYNs and finding someone whom I felt somewhat comfortable with, there were still health concerns related to my disability that were not addressed well throughout my pregnancy. For example, throughout my entire pregnancy, I was never weighed, which can be an indicator of many adverse health conditions, such as diabetes. My OB/GYN also didn’t discuss how a pregnancy would impact my life and my mobility while pregnant. I had to do my own research and bring in articles from the American Medical Association, for example, for my doctors’ appointments. I had to actively go out and seek the care that I felt I needed. I didn’t think that the health professionals I worked with, or that the majority of the health professionals, had the proper training or proper equipment within their medical offices to be able to address the health concerns of individuals with disabilities.

After I had my daughter, she was placed in the neonatal intensive care unit (NICU) for a few days. I couldn’t access the NICU room because it was not accessible, so the hospital staff would bring me into the NICU room on a stretcher. Even though the hospital room I was placed in was labeled “accessible,” it actually was not accessible for me to use, which caused a lot of frustration from the hospital staff. At the same time, it made me feel horrible about myself during my time as a birthing parent.

YV: What are some improvements that could be made to the healthcare system on a policy level that could better address the health concerns of individuals with disabilities?

SS: There need to be improvements made on incorporating disability into medical school education, which is currently not a part of the medical school curriculum in most medical schools. I do some lecturing on disability at the Warren Alpert Medical School of Brown University, but it’s only five hours. Five hours out of their entire medical school education. Considering that individuals with disabilities are the largest minority group in the United States at 15 percent, that’s a very small number of hours to spend on addressing their healthcare needs in medical school. Even the five hours they have in the curriculum came from students advocating for more education on disability.

For reproductive justice for individuals with disabilities, more education needs to be implemented, particularly sex education. There are assumptions that individuals with disabilities will not be sexually active and a lot of stigma associated with the topic in general. This exposes individuals with disabilities to a higher risk of abuse in relationships and higher exposure to STDs. There are currently only five states that require sex education for children with disabilities. Policies ensuring that children with disabilities are receiving sex education should be implemented universally. I would really like to say that I believe that women have reproductive rights, but we don’t. I had to fight for mine, and I come from a very privileged place.

YV: Historically, eugenics practices have largely aimed at restricting the reproductive care and rights of individuals with disabilities. How much do you think that is still present today? 

SS: A lot of eugenics ideas still persist today in our medical system. The idea of who is fit to be a parent and who should be a parent is still very much present. A lot of individuals with disabilities live with a fear of having their children taken away, and there’s a double standard that exists for parents with disabilities and parents without disabilities. Many of the spaces are also not physically accessible, and that systematic inaccessibility reinforces societal views of parents with disabilities. It’s just about having the right support and the right equipment. Just like for every other group, if you have the right support present, you will be able to do it.

YV: What are the policies present on this topic today, and what are the policies you would like to see implemented to ensure equitable reproductive healthcare access? 

SS: There is a lot of research currently being done that focuses on individuals with disabilities, a lot of research that has not been published yet. Disability is becoming more of a conversation, and I hope it stays that way. Our society needs more exposure to disability and more exposure to lived experiences, which could be achieved by allowing individuals with disabilities to be in research spaces and spaces where policies are created.

YV: How has Dobbs v. Jackson impacted the way individuals with disabilities are able to access reproductive care?

SS: Women with disabilities, as do all women, are going to struggle as a result of this decision because their choices are being removed. Many women use Planned Parenthood as a way to access reproductive care, not just abortion. Dobbs has certainly destroyed much of healthcare for all women, especially those who rely on healthcare safety nets because now they can’t. Court decisions like these and other policies like the Hyde Amendment, which restricts the use of Medicaid coverage for abortion, are very dangerous for low-income individuals, which are a large portion of individuals with disabilities.

*This interview has been edited for length and clarity.