Women with disabilities face barriers to reproductive health and there are social prejudices that describe women with disabilities as asexual, infertile and incapable as mothers.
Pregnancy with Disability
For most women, pregnancy is an exciting and anxiety-provoking time. Women with disabilities can experience unique challenges and rewards. When I found out that I was pregnant, I was filled with joy, but also with apprehension. I am a triple congenital amputee who uses an electric wheelchair to get around. I was less concerned about the consequences of my disability and more concerned about the attitudes of others towards my pregnancy. As a rehabilitation psychologist, I am well aware that women with disabilities face barriers to reproductive health and that there are social prejudices that describe women with disabilities as asexual, infertile, and incapable as mothers.
My regular OB / GYN was unprepared to handle my pregnancy. Although she never said it directly, I had the distinct feeling that she was uncomfortable with the idea of me having a child. She referred me to a high risk specialist, a perinatologist. She had no reason to believe she was at high risk, as she knew of other women with similar disabilities who had successful pregnancies. I was disappointed to learn that she was also scheduled to meet with a genetic counselor. I already knew that my disability did not have any genetic component. I felt defensive because I assumed that the goal of genetic counseling is the prevention or elimination of babies with disabilities, but I was surprised by the attitude of the genetic counselor. She agreed that my disability wasn't genetically inherited, but she also expressed very positive attitudes about disabled children.
We talked about the routine genetic tests that you might opt for during pregnancy. Initially, I thought it would be pointless for me to have any tests done because the discovery that the fetus had a disability would not affect my decision to continue the pregnancy. She knew she didn't want to do any risky procedures like miscarriage. In the end, I chose to have screening tests and blood tests that were non-invasive and did not cause any risk of harm to the baby or myself. I was surprised by my own decision, but felt that there was nothing wrong with having information that could help me be prepared.
Next, I saw the perinatologist. She told me that my pregnancy was not high risk, but that many providers would assume it was simply because I have a disability. She said that “you are probably all-time low risk woman to enter my practice; but it makes providers nervous because it is not in any of their textbooks. "She encouraged me to advocate for attempting a vaginal birth; many women with disabilities receive cesarean sections simply because of tension on the an area of the provider. She agreed to help me with coordinating a team of providers for my prenatal care I decided it was worth having such an informed and caring specialist help me with my case, even though that meant I would have to travel an hour each way to receive care.
The normal physical effects of pregnancy can affect a woman's disability. The impact of body changes depends on the specific type of disability and the particular woman. For example, the weight gain and alteration of body habit associated with pregnancy can influence mobility, transferability, and overall independence from the woman. At first, I thought I would just adapt to these changes and did not anticipate them being problematic. Later, I experienced severe discomfort and compromised skin integrity sitting in my wheelchair due to changes in my weight distribution. This required me to get a seat cushion designed to distribute pressure more evenly; The downside was that this cushion made it difficult for me to dress my lower body. Transferring me in and out of my wheelchair has become increasingly difficult. The physical changes of pregnancy have been substantial and have affected my physical functioning much more than I expected.
Health Care Support for Women with Disabilities
Finding a team of health care providers who are willing to
collaborate to address problems related to disability and pregnancy gives women
the opportunity to explore potential coping tools and strategies to help with pregnancy and parenting. I met with
the team at the hospital where I intend to deliver when I was
34 weeks pregnant to discuss delivery and postpartum care options. For more info, you can visit Disability Maternity Care.