"Right before we got married, I went to a doctor that someone recommended and told him I wanted to know what form of birth control to take. He told me that I needed to have my uterus removed. He said, "Well, you should never have children because it's very dangerous." [37-year-old polio survivor]
It seems like the default recommendation for women with severe physical disabilities is to have a hysterectomy. We received many reports that physicians assume women with disabilities would not be able to have children safely or that by removing the uterus, they could save them years of monthly trouble with menstruation. It is truly astounding how little information physicians are given about the effect of disability on reproductive capacity or the value women with disabilities ascribe to the ability to bear children. Few articles in the medical literature discuss the safety of oral contraceptives for women with various types of physical disabilities, alternative techniques for conducting pelvic exams, or the importance of breast cancer screening for women who have difficulty accessing mammography equipment. Our study was the first to ask a large sample of women with a variety of physical disabilities about their experiences with gynecologic health care. The national survey included numerous items about types of contraception used and problems encountered, reasons for having a hysterectomy, frequency of going for pelvic exams and mammograms, and reasons for not receiving cancer screening on a regular basis.
Little is known about the safety or convenience of various methods of contraception for women with disabilities. Thirty percent of women with disabilities in our study believed that they had been given inaccurate information about birth control by their physicians, in contrast to only 9 percent of the able-bodied comparison group. More than one-third of women with disabilities were using no method of birth control, compared with nearly one-fourth of women without disabilities. Although failure to use birth control could reflect lack of sexual activity or desire to get pregnant, it is possible that some women with disabilities are dissatisfied with the safety or convenience of the methods available to them. Use of oral contraceptives was uncommon in both groups, although it was more common among women without disabilities (16 percent) than women with disabilities (9 percent). Clinicians often believe that oral contraceptives are contraindicated for women with mobility impairments due to an increased risk of blood clots, but a paucity of literature specifically addresses this controversy. The relatively low rate of birth control pill use for able-bodied women may reflect the fact that nearly half of them were at least 40 years old; the age at which risk of thrombosis rises is 35 years. Condoms were used by partners of 11 percent of women with disabilities and 17 percent of able-bodied women, but other barrier methods were rarely used by women with disabilities, probably due to limitations in manual dexterity. The most popular methods of birth control for both groups were surgical; 16 percent of women in both groups had a tubal ligation and 7 percent and 8 percent of the partners of women with and without disabilities, respectively, had a vasectomy. Hysterectomy was a frequent option used by both groups, although more frequently among women with disabilities.
Members of the disability community are concerned that some women with disabilities, particularly early onset disabilities, are having medically unnecessary hysterectomies for the purpose of birth control. Some of the women interviewed in our qualitative study reported a physician recommending that they have a hysterectomy to make sure they would never get pregnant. Conversely, a woman with cerebral palsy reported pleading with her doctor to give her a hysterectomy because menstruation was so difficult for her to manage. Women with disabilities had a significantly higher rate of hysterectomy (22 percent versus 12 percent) than able-bodied women. This difference mainly reflects the large difference in rates between young women with and without disabilities, as there was no significant difference in hysterectomy rates between the two groups among women who were age 35 or older. Our findings indicate that women with disabilities are more likely to have a hysterectomy at a younger age than are women without disabilities. Women with disabilities were more likely than their able-bodied counterparts to have a hysterectomy for non-medically necessary reasons such as birth control, personal convenience, or at the request of a parent or guardian (22 percent versus 12 percent). Menstrual management is inadequately addressed in the rehabilitation setting.
Women with disabilities are no less susceptible than any other women to getting cervical cancer or breast cancer. Certain subpopulations of women, such as those with low income or low educational levels, Hispanics, Asians, are less likely than other women to have regular pelvic exams and mammograms to screen for cancer. We were concerned that access to pelvic exams and mammograms may also be limited for women with disabilities, leading to diagnosis of cancer at a later, less treatable stage.
There was a tendency for women with disabilities to be less likely to received pelvic exams within the recommended guidelines (once every two years) (67 percent) compared to women without disabilities (73 percent). It had been hypothesized that women with disabilities would be more likely never to have had a pelvic exam; however, the small percentage of women who indicated such was not significantly different between the groups. Women with more severe functional limitations were much less likely to have regular pelvic exams. Minority women with disabilities were less likely to have regular pelvic exams.
Among the women with disabilities who did not have regular pelvic exams, the most frequently selected reason was difficulty getting onto the exam table (37 percent), followed by being too busy (31 percent), and inability to find a doctor who suited them (29 percent).Other disability-specific reasons selected were don't need pelvic exams because of their disability, and can't find a doctor who is knowledgeable about their disability. Women with disabilities were significantly more likely than women without disabilities to select reasons of difficulty finding an accessible doctor's office or clinic, difficulty finding transportation, difficulty getting onto an exam table.
We found that women with disabilities who were at least 40 received mammograms at about the same rate as women without disabilities (55 percent versus 50 percent). Women who had higher education levels were more likely to have a mammogram. Women who perceived that they had more control over their lives were less likely to have a mammogram; some believed they would be able to detect breast cancer by self-exam alone. Women with disabilities who had not had a mammogram cited different reasons for not going than able-bodied women. Among women with disabilities who had not had a mammogram within the past two years, the most frequently given reason was inability to get into the required position (34 percent), followed by no doctor recommending the screening (25 percent), then the belief that their cancer risk was too low to warrant getting a mammogram (24 percent).
Women with severe disabilities have reported that physicians are unable to give them a complete pelvic exam or that mammograms are unable to screen all of their breast tissue for abnormal masses. Further research is needed using registries of women with disabilities who have had breast cancer to see if inadequate or no cancer screening is leading to diagnosis of cancer at a later, less treatable stage. There are also reports that treatment options for women with disabilities who get cancer are more limited.
The findings of this study lead us to believe that women with physical disabilities, particularly those with more severe functional impairments, are not receiving the same quality of gynecologic health care as their able-bodied counterparts. It is more difficult for them to receive information about methods of birth control that would be safe and effective options in light of special considerations related to their disability. They are more likely to have hysterectomies for reasons that are not related to medical necessity. Though they may have intended to have regular pelvic exams, they are discouraged by inaccessibility in physicians' offices. We have received reports from many physicians that they do not conduct a pelvic exam on a woman with a disability if having staff lift her onto the exam table is perceived as being too difficult or is not allowed under the facility's policies, or if spasticity, contractures, or pain create positioning problems. In contrast, women with disabilities were in some cases more likely to receive mammograms than women without disabilities. Even so, positioning difficulties caused some women to believe that they were not receiving a complete examination. To remedy these inequities, we recommend education and training for both women with disabilities and clinicians. There is a need for programs and materials to inform women about how disability can affect their reproductive health, and how they can work with health care providers to ensure that they are receiving the same quality of service as all women. There is also a critical need for information to be available at undergraduate and post-graduate levels to physicians, physician assistants, nurse practitioners, nurse midwives, and nurses in general, about the reproductive health care needs of women with disabilities. The Center for Research on Women with Disabilities has begun developing materials and training curricula for these purposes.