Pregnancy with a physical disability: One psychologist's journey
For most women, pregnancy is both an exciting and anxiety-provoking time. Women with disabilities may experience unique challenges and rewards. When I found out I was pregnant, I was overjoyed, but also apprehensive. I am a congenital triple amputee who uses a power wheelchair for mobility. I was less concerned about the effects of my disability, and more concerned about the attitudes of others toward my pregnancy. As a rehabilitation psychologist, I am well aware that women with disabilities face barriers to reproductive health and that social biases exist which portray women with disabilities as asexual, infertile, and incapable as mothers.
My regular OB-GYN was not prepared to handle my pregnancy. Although she never said it directly, I got the distinct sense that she was uncomfortable with the idea of me having a child. She referred me to a high-risk specialist, a perinatologist. I had no reason to believe I was high-risk, as I knew several other women with similar disabilities who had successful pregnancies. I was disappointed to find out that I had also been scheduled to meet with a genetic counselor. I already knew there was no genetic component to my disability. I felt defensive due to my assumption that the objective of genetic counseling is the prevention or elimination of babies with disabilities, but I was surprised at the attitude of the genetic counselor. She agreed my disability was not genetically inherited, but she also expressed very positive attitudes about children with disabilities. We discussed routine genetic testing that I could opt for during the pregnancy. Initially, I thought it would be pointless for me to do any testing because the discovery that the fetus had a disability would not impact my decision to continue the pregnancy. I knew I didn’t want to do any procedure that carried risks such as miscarriage. Ultimately, I did opt to have screening and blood work that were non-invasive and caused no risks of harm to the baby or myself. I was surprised at my own decision, but I felt that there was no harm in having information that might help me to be prepared.
Next, I saw the perinatologist. He told me that my pregnancy was not high risk, but that many providers would assume it was simply because I have a disability. He stated “you are probably the least high risk woman to come into my practice; but you make providers nervous because you’re not in any of their textbooks.” He encouraged me to advocate trying for a vaginal delivery; many women with disabilities receive cesarean sections simply because of anxiety on the provider’s part. He agreed to assist me in coordinating a team of providers for my prenatal care. I decided it was worth it to have such a knowledgeable and supportive specialist assist in my case, although it meant I would have to travel an hour each way to get my care.
Normal physical effects of pregnancy can affect a woman’s disability. The impact of bodily changes is dependent on the specific type of disability and the individual woman. For example, the weight gain and altered body habitus associated with pregnancy can influence a woman’s mobility, ability to transfer, and her overall independence. Early on, I figured I would simply adapt to these changes and didn’t anticipate them to be problematic. Later, I experienced serious discomfort and skin integrity compromise sitting in my wheelchair due to the changes in my weight distribution. This necessitated that I obtain a seat cushion designed to distribute pressure more evenly; the downside was that this cushion made lower body dressing difficult for me. Transferring in and out of my wheelchair has become progressively more difficult. The physical changes of pregnancy have been substantial, and have affected my physical functioning much more than I had anticipated.
Finding a team of health care providers who are willing to collaborate to treat both disability and pregnancy related issues provide opportunity for women to explore potential adaptive tools and
strategies to assist with pregnancy and parenting. I met with the multidisciplinary team at the hospital I intend to deliver at when I was 34 weeks pregnant to discuss options for delivery and postpartum care.
I was anxious going into the team meeting, but I was pleased to discover the team was highly encouraging and supportive. I asked the staff to make a special effort to disseminate the message
that my disability is not a horrible tragedy, and that I was an able professional and capable woman simply having her first baby. Prior to meeting with the team, I was concerned that nursing staff
would be surprised each shift by my disability, making it difficult for me to focus on my baby and myself.
Physical barriers can also play a role in good obstetrical and gynecological care for women with disabilities. Even though I am very pleased with the OB who is now providing my care, I'm disappointed that her office does not have an accessible scale or exam tables that lower for easier transfers. Women with disabilities may wish to obtain adaptive equipment to assist with parenting, such wheelchair accessible cribs and changing tables. I depended on online resources related to parenting with a disability to guide me to certain products that would work for me. I purchased
a crib with a door in the side so I can access the baby without having to reach over the side. Around 30 weeks, I met with a group of lactation consultants to discuss techniques for breastfeeding with one arm.
Perhaps what I have found the most helpful during my pregnancy has been the advice and input from other women with disabilities who have “been there, done that.” I am fortunate to call many women with disabilities my colleagues and friends, and pregnancy has been a special time for me to reach out to those who are also mothers. Speaking with mothers with disabilities has helped me gain perspective on the experience of pregnancy. Even though physically our experiences are different, other women with disabilities have faced the same societal and attitudinal barriers that I am currently dealing with.
I recently read an article online about an increase in the number of pregnancies among women with disabilities. Most striking were the comments submitted by readers. Most commenters described women with disabilities are “selfish” for having children, and assumed women with disabilities were receiving financial assistance from the government. Women with disabilities and their children were judged to be a burden on society. Several readers expressed the view that women with disabilities could not properly care for children, and should not reproduce due to the risk of passing on disabilities with a genetic component. These attitudes are pervasive in our society, although less often so brazenly expressed without the perceived anonymity of the Internet. In my daily life, such attitudes have played out more subtly. No one has asked me directly how I’m going to take care of my baby, but that question has been asked to my friends and family. Recently an acquaintance made a comment implying that I will have difficulty keeping up with my child from my wheelchair as he grows into a toddler.
My son is due in two weeks. I have yet to experience labor and delivery, so I haven’t met him yet. I feel frustrated when I think about the questions and stares that are no longer just my problem, but will become his. I'm sorry that he will be born into a world where others may assume that his mother is less capable because she is physically different. There are realities about my disability that I know will make parenting difficult. I also know that parenting is difficult, period. In disability culture, we promote independent living. Independent living isn’t so much about being able to do everything yourself, but rather about exerting control and autonomy in your life and your roles, including parenting. My parenting journey will require assistance from others, adaptations, and unconventional ways of doing things. I know already this will help shape my son into a compassionate and openminded person. For that, I offer no apologies.
References and Resources
Jackson, A. (1996). Pregnancy and delivery. In: D Krotoski, M Nosek, M Turk, editors. Women with Physical Disabilities: Achieving and Maintaining Health and Well Being. Baltimore (MD): A Paul H Brooks Publishing.
Neergaard, L. (2011). More disabled women are having children. Associated Press. Retrieved October 17, 2011 from
Rogers, J. (2011). Pregnancy Planning for Women with Mobility Disabilities. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation.
Rogers, J. (2005). The Disabled Woman's Guide to Pregnancy and Birth. New York: Demos Publishing.