Sarah Skels is a professor at Brown University, a researcher, activist, and world-class sailor. Skels holds a BA in Exercise Physiology from the University of Virginia and an MPH from the George Washington University School of Public Health, specializing in Health Promotion/Disease Prevention and Disability. Skels serves on the Rhode Island Governor’s Commission on Disability and teaches one of the few disability-focused courses at Brown University, “From Pathology to Power: Disability, Health, and Community.” Skels is also a consultant for the Boston Medical Center Spinal Cord Injury Model Systems Program and the Boston University Health and Disability Institute, and a member of the U.S. Disability Sailing Team. Her research focuses on peer-to-peer exchange and empowerment programs for people with spinal cord injuries.
Yulia Verhan: Can you tell us a bit about your career path?
Sarah Skiles: I got my bachelor’s degree from the University of Virginia in 1989. After graduation, I worked in the Rehabilitation Division at the National Institutes of Health. I was accepted into a graduate program with the intention of becoming a physical therapist. About two months after that, I was in a car accident while training for a triathlon and suffered a spinal cord injury. As a result, my enrollment was rescinded. I decided to shift my focus to public health because I wanted to impact health care and the way it is delivered to the disability community. I started focusing on health promotion and disability. I came to Rhode Island to work for a nonprofit that runs a summer program for children with disabilities and got involved at Brown University with a postdoctoral fellowship. This led to the creation of the course “From Pathology to Power: Disability, Health, and Community.”
YV: What has your experience of receiving reproductive care been like?
SS: When my partner and I decided to have children, I knew I had to find an OB-GYN who would listen to me, but that was harder than I thought it would be. Even after meeting with multiple OB-GYNs and finding one I felt somewhat comfortable with, my disability-related health concerns were not adequately addressed throughout my pregnancy. For example, I was never weighed throughout my pregnancy. Weight can be an indicator of poor health for many conditions, such as diabetes. My OB-GYN also did not discuss how pregnancy would affect my life or my ability to exercise during pregnancy. I had to do my own research and bring along American Medical Association articles, for example, to every doctor’s appointment. I had to be proactive and go out and seek the care I felt I needed. I did not believe that the medical professionals I worked with, or the majority of medical professionals, had the proper training or the proper equipment within their medical facilities to address the health concerns of people with disabilities.
After I gave birth to my daughter, she was put in the Neonatal Intensive Care Unit (NICU) for a few days. I couldn’t enter the NICU room because it wasn’t wheelchair accessible, so the hospital staff carried me to the NICU room on a stretcher. The hospital staff was very annoyed because the room I was put in was marked as “handicap accessible” but it wasn’t actually wheelchair accessible for me. At the same time, I felt terrible about myself as a parent during birth.
YV: What improvements can be made to the health care system at a policy level to better address the health concerns of people with disabilities?
SS: We need to improve on integrating disability into medical school education. Currently, disability is not part of the medical school curriculum at most medical schools. I teach disability at the Warren Alpert Medical School at Brown University, but it’s only five hours long. Five hours of the entire medical school curriculum. Given that people with disabilities are the largest minority group in the United States at 15 percent, there is very little time spent in medical school addressing their health care needs. Even the five hours that are in the curriculum came from students advocating for more education on disability.
Reproductive justice for people with disabilities requires more education, especially sex education. There is an assumption that people with disabilities are not sexually active, and there is a lot of stigma around the topic in general. This puts people with disabilities at higher risk for abuse in relationships and higher risk of contracting sexually transmitted diseases. Currently, only five states require sex education for children with disabilities. Policies need to be universally implemented to ensure that children with disabilities have access to sex education. I truly believe that women have reproductive rights, but they don’t. I’ve had to fight for my rights, and I come from a very privileged background.
YV: Historically, eugenic practices have primarily been aimed at restricting reproductive care and rights for people with disabilities. To what extent do you think that remains today?
SS: Eugenic ideas persist a lot in our health care system today. Ideas about who is and should be a parent still persist. Many people with disabilities live in fear that their children will be taken away, and there are double standards between disabled and non-disabled parents. Many spaces are also physically inaccessible, and that systemic inaccessibility reinforces society’s views of disabled parents. With the right support and the right facilities, that’s enough. Like every other group, with the right support, they can do it.
YV: What policies currently exist on this issue, and what policies would you like to see implemented to ensure equitable access to reproductive health care?
SS: There is currently a lot of research being done that focuses on individuals with disabilities, but there is a lot of research that has yet to be published. Disability is becoming more and more talked about, and I hope that will continue to be the case. Our society needs to know more about disability and the lived experiences. This can be done by ensuring that individuals with disabilities are included in research spaces and in the spaces where policies are made.
YV: How has Dobbs v. Jackson affected the way people with disabilities access reproductive health care?
SS: Women with disabilities, like other women, will struggle with the choices that will be taken away as a result of this decision. Many women rely on Planned Parenthood as a way to access reproductive health care, not just abortions. Dobbs has destroyed a lot of health care for all women, especially those who relied on the health care safety net, because they can no longer have it. Decisions like this and policies like the Hyde Amendment, which limits Medicaid coverage for abortions, are extremely dangerous to low-income people, who make up the vast majority of people with disabilities.
*This interview has been edited for length and clarity.