ODDC- Female Sexuality After a Disability; Improving the Contexts in which People with Disabilities Navigate Sexual Relationships; Contraceptive Choices for Women with Disabilities; Fertility, Pregnancy, and Childbirth; and Parenting from Infancy to Toddlerhood

ODDC Banner

TITLE: Female Sexuality After a Disability; Improving the Contexts in which People with Disabilities Navigate Sexual Relationships; Contraceptive Choices for Women with Disabilities; Fertility, Pregnancy, and Childbirth; and Parenting from Infancy to Toddlerhood

Speakers: Beverly Whipple, Ph.D., R.N., Rutgers University; Mitchell S. Tepper, Ph.D., M.P.H, Quinnipiac University; Judi Rogers, O.T.R., Through the Looking Glass; Margaret A. Turk. M.D, State University of New York Upstate Medical University at Syracuse, Eleanor A. Drey, M.D., Ed.M.- Professor, Obstetrics, Gynecology and Reproductive Sciences, Center for Reproductive Health Research and Policy, University of California, San Francisco. (Katherine Cargill-Willis 3/23/04)

Female Sexuality: Sexuality refers to more than just the genitals and their function. It includes all the components- biological, psychological, emotional, social, culture, and spiritual- that make people who they are. People can to express their sexuality in any of these arenas without necessarily involving the genitals. Data shows that psychological and social factors have a strong impact on the sexual functioning of women with disabilities. Studies of women who have complete spinal cord injury (SCI), an injury resulting in total loss of sensation and function below the injury level, show that women moved from a period of cognitive genital disassociation, to being sexually disenfranchised, to a period of sexual rediscovery.

Studies also show that women with complete SCI do experience sexual desire, response and orgasm. Data from functional magnetic resonance imaging (fMRI), that uses magnetic fields and radio waves to elicit signals from the brain, and positron emission tomography (PET), that uses low doses of a radioactive tracer to obtain signals from the brain, show that the sensory vagus nerve, which by-passes the spinal cord and goes directly from the genitals to the brain, is involved in sexual response and orgasm in women. This appears to be true in both women who have a complete SCI and those who have an incomplete injury.

Research priorities:

Develop ways to teach women with disability the skills to enhance confidence to establish meaningful sexual relationships with others;
Conduct research concerning safer sex for people with disabilities across all ages and all disabilities;
Investigate the effects of mid-life hormonal changes in women with disabilities
Conduct physiological studies on sexual function in women of all ages with various disabilities;
Determine the best ways to help women with disabilities advocate for their own sexual health and sexual rights

Improving the Contexts in which People with Disabilities Navigate Sexual Relationships: The Disability Rights movement is now demanding rights to sexual education, sexual health care, and sexual expression. Research shows that the longer a person has lived with a disability, the greater the sexual self-esteem, body image, sexual pleasure and satisfaction were. Sexual self-discovery, the ability to experience pleasure and satisfaction, includes establishing a relationship with oneself and others with a different body, different life and different interpersonal relationships.

A supportive sexual relationship with a supportive partner is important to overall psychological well-being, decreased incidence of depression, and increased pleasure and satisfaction. Surprisingly, marital relationships appear to be less beneficial than other kinds of relationships for people with physical disabilities, suggesting that married couples may need more support to deal with the special circumstances they face in maintaining a relationship affected by a physical disability.

Research priorities:

On the psychological, social and environmental factors that assist people with physical disabilities to develop more positive feelings about their sexual selves and experience more sexual satisfaction and pleasure over time.
On the dynamics of successful sexual relationships for disabled people, especially with non-disabled people.
Special emphasis should be placed on disabled persons requiring more personal assistance who are often contained by institutional or programmatic barriers.
Research the effects of hormonal and physiologic changes on people with different disabilities as they age.
Research sexual abuse and victimization

Contraceptive Choices for Women with Disabilities: Mortality is higher with pregnancy than with contraception.

50% of all pregnancies are unintended
50% of these are women that are using contraception
50% end in abortion

While pregnancy may present extra difficulties and dangers for women with disabilities, frequently they also receive inadequate contraceptive counseling and safety concerns are overemphasized. There are new contraceptive methods offering women with disabilities reliable and appropriate options with additional benefits. Some new methods are highly effective and reversible without requiring daily compliance.

New methods of birth control

Mirena Levonrgestrel- containing an IUD: effective for over five years, infections are rare, few women have side effects and return to fertility soon after removal, and involves no estrogen.
NuvaRing: self insertion and removal and exact positioning is not important; provides good cycle control, very effective; convenient, monthly doses and low estrogen dose
Transdermal patch Ortho Evra: Applied weekly for three weeks to arm, back or torso, one week patch-free, successful for teens and those unable to swallow pill or follow a daily regime, very low dose of hormones, more effective than oral contraception without the peaks and troughs.
Plan B: Progestin, for emergency-use, prevents pregnancy after unprotected sex; 99% effective and could prevent 1.7 million unattended pregnancies and reduce abortions by half.

Research Priorities:

Possible health benefits of contraceptive methods and new contraceptive methods
Contraceptive knowledge, attitude and practices
Strategies to improve contraceptive counseling and distribution
Emergency contraception- education and over-the-counter availability

Fertility, Pregnancy, and Childbirth: Although there is very little scientific data on sexual functioning, conception and childbearing for women with disabilities, they are conceiving and having successful pregnancies and deliveries. The majority of reproductive research has been gathered on people with spinal cord injury. Impaired fertility in men with SCI is recognized, but it is assumed not to be an issue for women. Still there is a low rate of pregnancy in people with SCI. The majority of the information regarding pregnancy and childbirth comes from case reports and anecdotal information. The data includes:

Pregnancy: increases urinary tract infections; increases spasticity; increases frequency of automatic dysreflexia; increase pressure sores; decreases transfers from wheel chairs

Childbirth: increased C-sections; fewer spontaneous deliveries; instable blood pressure; premature labor and delivery and anesthesia was used less.

Neonatal Health: low birth weight and problems with breathing

There is less research regarding women with other disabilities. Again small studies have identified possible trends for conditions or complications that women with adult and developmental disabilities may experience.

Neuromuscular Diseases: pulmonary complications with fetal growth and genetic implications

Spina Bifida: male infertility issues and in women back pain and deterioration of urinary status

Multiple Sclerosis: fertility issues, exacerbation may decrease during pregnancy and increase during childbirth

Congenital Heart Disease: common heart implications for women, and higher risk of fetal and neonatal complications

Epilepsy: higher oral contraception failure, medication safety- fetal anticonvulsant failure, seizures during pregnancy; neonatal vitamin K deficiency, and increase bleeding.

Research Recommendations

Document the fertility status among people with disabilities
Organize databases or registries to determine the conditions and complications of pregnancy and childbirth
Assess the impact of disability related complications during pregnancy, labor and delivery
Scientifically support the "best practices" that have evolved regarding the management of pregnancies and deliveries of women with disabilities.
Identify neonatal risks of pregnancies in women with disabilities
Disseminate medical knowledge to educate health professionals and consumers

Parenting from Infancy to Toddlerhood: Although there is not much positive research on parents with disabilities, Through the Looking Glass (TLG) has been reviewing and conducting research on parents with disabilities and their children since 1986. Studies at TLG have emphasized a disability culture orientation, considered social obstacles and contextual factors in the lives of parents with disabilities and their children during infancy, school age and adolescence. TLG has conducted three research projects focused on developing and evaluating the effects of baby care adaptations for parents with disabilities. The studies showed that such equipment can have a positive impact on parent/baby interactions reducing the difficulty, pain and fatigue associated with baby care. By lessening the physical demands; the equipment can help prevent secondary disabilities. The equipment also appears to have a significant effect on alleviating depression associated with postnatal exacerbations of a disability, such as multiple sclerosis. The research has influenced public policy un so far as:

California included baby adaptations in the MediCal coverage, and
Idaho included parenting adaptations in evaluations and services associated with family courts, adoption and child protective services

TLG’s Rehabilitation Research and Training Center on Families of Adults with disabilities conducted the largest national study on parents with disabilities yielding data from a sample of 1175 parents with disabilities:

717 parents said adaptive equipment could have improved their lives
53% said adaptive equipment would have make them more independent
53% also said adaptive equipment would have make them more tired
51% said adaptive equipment would make things take less time
49% said adaptive equipment would make them feel more secure about their child safety
42% said adaptive equipment would have caused less pain
83% cite transportation as a problem

A significant portion of the sample experienced difficulties during pregnancy or childbirth

24% cited physical or communication access barriers
62% found a lack of disability expertise on the part of professionals, attitudinal problems and/ or interference in the right to become a parent
16% (predominantly middleclass, educated and physically disabled) reported efforts to remove the children from their custody

Much of the research on parents with disabilities is a search for problems in these families. There is a tendency to generalize parents who have intellectual or psychiatric disabilities with parents who have physical disabilities. It is also common for other risk factors, like childhood abuse, to be underreported or ignored, so all problems are attributed to the disability. These beliefs could be especially damaging to parents with disabilities who are involved in the family courts and child protection systems.

Research Priorities:

Research on the impact of the parenting adaptations on parents and grandparents with physical disabilities and their children and grandchildren
Research on the attitudinal factors in legal, social services and mental health services with regard to regarding parents with disabilities
Research on the interface between school and parents with disabilities regarding access and communication
Research on discipline and behavior management in toddlers, school age children and adolescent children and their parents with disabilities
Research adult children of parents with disabilities by disability and identify other factors such as trauma and attachment histories; domestic violence, social obstacles and supports.

Return to the top of the page.