This is the latest in a series of interviews with APA Books authors. In this interview, Tyler Aune, Editorial Supervisor at APA Books, spoke with Shari Miles-Cohen PhD, Senior Director of the Women’s Programs Office at the American Psychological Association, and Caroline Signore, MD, MPH, a board-certified obstetrician-gynecologist and a fellow of the American College of Obstetricians and Gynecologists (ACOG). Their book, Eliminating Inequities for Women with Disabilities: An Agenda for Health and Wellness was recently released by APA Books.
Note: The opinions expressed in this interview are those of the authors and should not be taken to represent the official views or policies of the American Psychological Association.
Shari E. Miles-Cohen, PhD, is Senior Director, Women’s Programs Office (WPO) at the American Psychological Association (APA). Dr. Miles-Cohen has received funding from the National Science Foundation and the US Department of Health and Human Services, Office of Women Health to explore the educational needs and health care needs of women with disabilities. Prior to joining APA, she served in leadership positions with university-based and independent non-profit organizations working to improve the lives of women and girls, including the African American Women’s Institute, the Society for the Psychological Study of Social Issues, and the Women’s Research and Education Institute. Dr. Miles-Cohen holds a Bachelor of Arts from the University of Colorado at Boulder, and a Master of Science and a Doctor of Philosophy in Personality Psychology from Howard University.
Caroline Signore, MD, MPH, is a board-certified obstetrician-gynecologist, and a Fellow of the American College of Obstetricians and Gynecologists (ACOG). Her interest in the reproductive health care needs of women with disabilities arose in 1996, when, shortly after completing her residency training, she sustained a traumatic cervical spinal cord injury. Since then, she has delivered a number of presentations on reproductive health and wellness in women with disabilities, served as a guest reviewer for a handbook on health for women with disabilities in developing countries, and authored chapters for women’s health textbooks. From 2004 to 2009, Dr. Signore served as an Advisory Board member to an American College of Obstetricians and Gynecologists committee to produce resources to assist ACOG members with providing quality reproductive health care to women with disabilities.
What’s great about your book is that you don’t just describe the problem: You also lay out a very detailed agenda for reform, with specific information about what needs to change, and where. And I was really struck by how hopeful the language in that chapter is. Did you feel hopeful all the way through this project?
Shari: I think we’re both hopeful people by nature, so that helps. But I also think, if I can name the problem, I can solve the problem. We may need a lot of people, we may need a lot of money, but there is a solution out there for almost everything. And for me, the solution is trying to meld the behavioral and physical health structures to better serve women with disabilities.
Caroline: Well, sometimes I didn’t think this book would ever get finished! But that aside, I agree with Shari, we are hopeful people, and I also believe that if you name the problem you can start to fix it. We realistically know nothing’s going to change overnight, but there are incremental steps, and this book will serve a guide for people who may be drawn into the field, or who are already here, doing the work that needs to be done.
Shari: I feel like I learned a lot, coming to these issues from a psychologist’s background. I have a better understanding now of physicians and what they need, and how they think, and what challenges they may have with integrated care. Because you lose a little bit of autonomy when you start to share, and that can be challenging for people from different disciplines. And so that was really helpful, because it’s much easier to communicate that path forward when you have a better sense of what the other people who will be part of the team are thinking.
Caroline: I have to say I came into the project not understanding what integrated care is, and Shari has been a patient teacher. But the more I understood it, the more I thought: This makes so much sense! Why are we so siloed? Integrated care is especially important for underserved populations, who could really use extra care and guidance. Particularly in areas like biopsychosocial models of care that aren’t taught in medical school, that physicians may feel poorly equipped to handle on their own. I’m hopeful that this book can educate physicians about how to provide better care to women with disabilities.
Shirley Chisolm, the first black female member of the U.S. congress, said that she faced more obstacles in her life because of her gender than her race. At the risk of oversimplifying a very complex issue, do you think women with disabilities face more discrimination because of their gender, or because of their disability?
Caroline: Without question, in the health care setting, especially in the reproductive health care setting, women with disabilities feel a-gendered. They feel that their caregivers don’t think of them as women. And that’s very troubling, for them and for me. Not only are there physical barriers to actually getting to a doctor’s office. But to not get information, or careful, complete care [in reproductive and sexual health] because of an assumption on the part of the caregiver that’s wrong, is really galling.
Shari: It’s hard for me to separate the gender and the disability, or the gender and the race. A woman with a disability is intact, a gestalt; she is one person. It’s all in there together, and you can’t really separate them out. You have to work hard to separate them. In some ways, physicians and psychologists and others are working against human nature when they a-gender a person coming into the office.
So it takes effort to discriminate. I never thought about it that way before.
Shari: I think it does, yeah. You have to work at it, right? I think you have to work hard to see people in that way.
Research shows that women with disabilities who live in poverty and particularly in rural areas are at especially high risk for poor outcomes. And these are outcomes that may be difficult to change, given that many of the accommodations you describe in this book will be made to medical facilities that are far away from where they live. What can we do for these people?
Caroline: Telehealth is really promising. Today you can FaceTime with most anybody, almost everybody has a smartphone now. And even in rural areas, if you can’t physically go to the physician’s office—heck, I’d rather FaceTime with my doctor than actually have to go to his office, it’s just so much easier. I have high hopes for the incorporation of telemedicine into care in general, and especially care for people who have
Shari: Along with technology, infrastructure also has to change. The smartphone and the monitor are important, but so are the wires and conduits running to rural communities. So is educating doctors (and psychologists) that it’s a good thing to do, and educating patients that they can still get good care via telehealth. But all of that’s doable, it just takes education. We need to educate policymakers here [in Washington], and in the States, using the State Psychological Associations and State Medical Associations to get them engaged in the conversation.
Making people aware of the urgent challenges that this population faces, as you’ve done in this book, is obviously enormously beneficial. What are the next steps?
Shari: We’re seeing women with disabilities across the country who are really engaged in making change. The book can help give them have a better sense of what the entire map looks like, and how they can be most strategically engaged. Because one of the things that Caroline and I talk a lot about is, how do you change the ways that physicians and psychologists are educated? It’s all about teaching hours. Well, how do you get a school to dedicate teaching hours to the issues women with disabilities face? One way is that you change the standards: What’s gonna be on the board exam, right? So how do you get that done? There are all these steps. In addition to public education efforts which bring attention to the issue, raising visibility, there are other complementary activities, such as professional development, research, and policy efforts, which we discuss at some length in the book’s recommendations section, that together can help to bring about change.
Caroline: This is not a completely ignored issue. But it is underrecognized. And understudied. It isn’t just a matter of psychological care or medical care. It is also a matter of civil rights, and politics, and policy, and that makes it a little more complex. We must have patience, as each person tries to get the word out. My hope is that our work will be viewed as a standard textbook for disabilities studies. I would love to see it in medical schools, nursing schools, psychology classes, graduate education. The more people know about it, the more we can get done.