Worldwide, the reproductive health of men and women with physical disabilities is usually given low priority or dismissed. This often arises from the myth that disabled people are not sexually active, with no need to control their fertility. Since people with disabilities are often hidden from view or may have difficulty reaching clinics, family planning providers may not be aware of their reproductive health needs.
Many disabled people are able to have children and, like able-bodied people, may wish to use contraception temporarily. Others may seek a permanent or long-acting contraceptive method, since childbearing and child rearing may be difficult for them. Some may prefer a permanent method if they suffer from a genetic condition that could be passed to their children. For example, there is increasing evidence that genetic factors play a role in the development of multiple sclerosis, a neurological disease that leads to paralysis, tremors and speech disturbances and is often diagnosed in a person's reproductive years.1
"Disabled people tend to be hidden in their homes for many years," says Eileen Giron, executive director of the Cooperative Association of the Independent Group for Rehabilitation (ACOGIPRI) in El Salvador. "Physical barriers outside the house and lack of transportation also make it very difficult for them to get out. As a result, they are not represented on committees and their needs are not known. But when we have held workshops about sexuality, the disabled women and men with whom we work say they need more reproductive health services. They say they have long wanted to learn more, but just didn't know whom to ask."
When offering contraceptive information and counseling, family planning providers need to consider medical issues associated with various physical disabilities. Contraceptive options will depend upon such factors as the quality of circulation (especially in the extremities), whether abnormal clotting is associated with the condition, degree of physical sensation, manual dexterity, whether the condition is stable, whether a contraceptive could worsen the condition, possible drug interactions with medications a person is taking, whether the individual is depressed, and any problems the client has with menstrual hygiene.2
Hormonal methods
If a woman wishes to use combined oral contraceptives (OCs), a primary concern is whether she is at increased risk of thromboembolism (blood clots that block blood vessels). OCs are contraindicated for women who have impaired circulation, a history of cerebrovascular accident or immobility of extremities.3 This means women with cerebral palsy, spinal cord injury, poliomyelitis, muscular dystrophy and some women with rheumatoid arthritis may not be able to use this method. The possibility also exists of not detecting thrombophlebitis (inflammation of a vein with blood clot formation) in women with impaired sensation in the lower extremities due to spinal cord dysfunction or multiple sclerosis. In these cases, a progestin-only pill could be considered.
Whether hormonal methods of contraception exacerbate such conditions as rheumatoid arthritis or multiple sclerosis remains unresolved. The majority of 18 studies investigating the relationship between OCs and rheumatoid arthritis suggests that OCs provide some protection against development of the condition.4
Two early studies that investigated the effect of OCs on multiple sclerosis after the disease had developed showed no effect on the long-term prognosis of the disease.5 Other evidence suggests that estrogens may stabilize some multiple sclerosis symptoms, including cognitive functions.6
The progestin-only injectable depot-medroxyprogesterone acetate (DMPA) is commonly offered to women with mobility impairments who may be at increased risk of thromboembolism. DMPA has not been shown to cause changes that would increase the risk of blood clot formation or stroke; thus, its use can be considered for women with paralysis caused by spinal cord injury, dystrophies, multiple sclerosis and poliomyelitis.7 DMPA also tends to decrease menstrual blood loss, often causing amenorrhea, which may be a benefit for women who lack the manual dexterity to use tampons or sanitary pads. However, long-term DMPA use can be associated with decreased bone mineral density in some women, especially among younger adolescents,8 and it has been hypothesized that such a drop can put even premenopausal women at risk for osteoporosis. Norplant, a subdermal implant, often causes irregular bleeding, which may cause hygiene problems.
Non-hormonal methods
Copper T intrauterine devices (IUDs) tend to increase menstrual bleeding, raising two concerns. The first is that excessive blood loss could lead to anemia, causing problems for women with respiratory ailments (as might be the case for victims of polio) or rheumatoid arthritis.9 The second concern is that increased menstrual bleeding could cause hygiene problems for women lacking manual dexterity.
When considering a Copper T IUD as a contraceptive option, providers must also consider whether a woman has lost sensation in her pelvis. Because women with multiple sclerosis or spinal cord dysfunction may lack sensation, IUD-associated pelvic inflammatory disease or ectopic pregnancy might not be detected should it occur. IUD insertion may be difficult in a woman with cerebral palsy, scoliosis or multiple sclerosis, since the woman may experience adductor spasms of the thighs.10
A woman must also be able to check the string of an IUD regularly to determine if the IUD has been expelled. If a woman cannot use her arms or hands, however, her partner might be able to check the string.
In terms of barrier methods, physically disabled persons should be encouraged to use condoms if they are at risk of acquiring sexually transmitted diseases (STDs), just as able-bodied persons should be encouraged to use them. Although correct use of a barrier method may be difficult for people with poor coordination or upper extremity disabilities, able-bodied partners may be able to assist. STD prevention is particularly important for physically disabled women with pelvic sensory impairments that could allow STD symptoms to go unrecognized.
The presence of STD in a physically disabled person is not as unlikely as some providers may think. If an STD is diagnosed in a disabled woman, providers should consider whether the woman acquired the infection as a result of sexual abuse. "Many of the deaf women with whom we work are victims of sexual abuse," says Giron of ACOGIPRI in El Salvador, "or they exchange sex -- sometimes with multiple partners -- for food and shelter. This puts them at risk for STDs, but they often do not know how to protect themselves from STDs."
However, anyone with disabilities is at risk. "In Africa, the risk for sexual abuse of women with disabilities is very high," notes Dorothy Musakanya of the Zimbabwe-based Southern Africa Federation of the Disabled (SAFOD). "Many disabled women and girls are sexually or physically abused by family members, caretakers or friends."
While sterilization may be medically appropriate for some disabled people, special care should be taken to ensure that such clients fully understand and freely consent to the permanent procedure.
"Physically disabled people are sometimes sterilized based on the belief that sparing them from bearing and raising children is in their own best interests," says Lizzie Mamvura Longshaw of the National Council for Disabled Persons in Zimbabwe. "But children provide company and a deep sense of responsibility to the human race. Accordingly, denying a disabled person the right to have children is not only inhumane but a clear denial of one's fundamental human rights."
Disabled lack information
Ginger Lane, chairwoman of the Health Resource Center for Women with Disabilities at the Rehabilitation Institute of Chicago, recently visited Bosnia primarily to address the sexuality and reproductive health concerns of men paralyzed by war injuries.
"Most of the men with spinal cord injuries we saw wanted to have babies," she says. "They did not question their ability to raise children; they needed help with how they technically could father a child. Yet, many disabled persons who are physically able to have a child without problems question whether they can or should raise a child. With proper education, counseling and encouragement, though, they may come to view parenthood as a very reasonable and good option and finally be in a position to make a truly informed choice about their reproductive lives."
Unfortunately, physically disabled people often do not receive adequate information and counseling about sexuality and reproductive health.
Meenu Sikand, the Toronto-based vice-chairwoman of the Canadian Association of Independent Living Centers' International Committee, says that in her native country of India "women with even simple physical disabilities or conditions -- like seizures -- never learn about reproductive health because they are considered to have no marriage prospects. They are routinely denied the opportunity even to go to school since they may have a seizure, fall down and humiliate the family. They are not seen as full human beings. Any imperfection that compromises a woman's ability to take care of her family means she is out of the marriage market."
In southern Africa, says Musakanya of SAFOD, "tradition generally views disability as a curse, a punishment from the ancestral spirits or God for wrongs committed by one's parents. As a result, most parents hide their disabled children, and a disabled woman is not expected to have children."
Furthermore, "in the developing world, it is highly unusual for a disabled woman even to have had a routine gynecological checkup," says Lucy Wong-Hernandez, executive director of the Winnipeg, Canada-based Disabled Peoples International. "I have personally known many disabled women with cervical or breast cancer who never had the opportunity to have these often life-threatening conditions detected with a Pap smear or mammogram. Because no one talks about breast cancer in disabled women, these women do not even know how to examine their own breasts."
Although disability may carry less stigma in the developed world, a U.S. study of 55 women ages 18 and older with either acquired or congenital physical disabilities showed that only 19 percent had received sexuality counseling. Some 65 percent had received information about contraception, but women with paralysis, impaired motor function or obvious physical deformity were rarely offered contraceptive information or methods.11
Disabled adolescents may be at least as sexually active as healthy, able-bodied adolescents. A U.S. survey of disabled young people between 12 and 18 years old (approximately 500 of whom had clearly obvious disabilities and 1,100 whose disabilities were not apparent) found that the disabled adolescents did not differ from their healthy peers in terms of the proportion ever having intercourse, age of first sexual intercourse, ever causing or having a pregnancy, or contraceptive use patterns.12
In countries with active disability programs, health-care providers are increasingly giving reproductive health information to persons with physical disabilities, says Musakanya of SAFOD. "They also are learning to assess the patient's pre-disability versus current sexual functioning; how the disability affects the patient's sexual expression, contraceptive needs and use; and any sexual abuse that might be occurring."
-- Kim Best
References
- Sadovnick AD, Baird PA. Reproductive counseling for multiple sclerosis patients. Am J Med Genet 1985;20(2):349-54.
- Leavesley G, Porter J. Sexuality, fertility and contraception in disability. Contraception 1982;26(4):417-41.
- Haefner HK, Elkins TE. Contraceptive management for female adolescents with mental retardation and handicapping disabilities. Curr Opin Obstet Gynecol 1991;3(6):820-24.
- Brennan P, Bankhead C, Silman A, et al. Oral contraceptives and rheumatoid arthritis: results from a primary care-based incident case-control study. Semin Arthritis Rheum 1997; 26(6):817-23.
- Royal College of General Practitioners. Oral Contraceptives and Health. New York: Putnam, 1974; Poser S, Raun NE, Wikstrom J, et al. Pregnancy, oral contraceptives and multiple sclerosis. Acta Neurol Scand 1979;59(2-3):108-18.
- Sandyk R. Estrogen's impact on cognitive functions in multiple sclerosis. Int J Neurosci 1996;86(1-2):23-31; Zorgdrager A, De Keyser J. Menstrually related worsening of symptoms in multiple sclerosis. JNeurol Sci 1997;149(1):95-97.
- Leavesley.
- Cundy T, Evans M, Roberts H, et al. Bone density in women receiving depot medroxyprogesterone acetate for contraception. BMJ 1991;303(6793):13-16; Cundy T, Cornish J, Roberts H et al. Spinal bone density in women using depot medroxyprogesterone contraception. Obstet Gynecol 1998;92(4):569-73.
- Leavesley.
- Haefner; Leavesley; Neinstein L. Contraception in women with special medical needs. Comp Ther 1998;24(5):238.
- Beckman CR, Gittler M, Barzansky BM, et al. Gynecologic health care of women with disabilities. Obstet Gynecol 1989;74(1):75-79.
- Suris JC, Resnick MD, Cassuto N, et al. Sexual behavior of adolescents with chronic disease and disability. J Adolesc Health 1996; 19(2):124-31.
Click to select preferred language, if other than English:
French | Spanish.
