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Introduction
Adults with intellectual disabilities face numerous differences in health status and problems with access to medical care. Women with disabilities face serious barriers to care, “including the lack of training and experience of health care providers” (Eager, 2017). Furthermore, indecision when discussing sexual health, limited opportunities for sex education, and lack of sexual knowledge. In addition, they face a higher prevalence of sexual violence and assault, a lack of dialogue about the human right to consensual sexual expression, poor treatment of menstrual disorders, and legal and systemic barriers. However, reproductive justice and disability justice are human rights—based frameworks that inherently have fundamental similarities. They prioritize the right to bodily autonomy and self-determination. There is a particularly acute problem concerning abortion. There is a need for justice in reproductive rights for women with intellectual disabilities.
Discussion
People with disabilities face numerous barriers to access to reproductive health services. To begin with, these are problems with admission to resources. Despite state requirements that all medical institutions comply with federal laws preventing discrimination and protecting the rights of women with disabilities, they are not always respected (Eager, 2017). Since most primary care physicians lack experience and education, the barriers to adequate medical care for adults with intellectual disabilities are being strengthened in sexual health, a sensitive topic for people with and without disabilities. The lack of clear evidence regarding sexual health for adults with intellectual disabilities compounds this barrier. Hospital forms that patients or written materials with information about medical services or health status may also be unavailable to patients with intellectual and developmental disabilities or not consider the unique needs of people with disabilities.
Another problem is limited access to abortion services. Medicaid is an essential source of insurance coverage for people with intellectual disabilities. More than 1 in 3 adult Medicaid participants aged 25 to 65 years has a disability, including mental retardation (Carter et al., 2022). That is why restrictions like the Hyde Amendment, an annual appropriations allowance prohibiting using Medicaid dollars for abortion services, disproportionately impact people with disabilities who have permission to access the abortion services they want and need. In addition, women with disabilities and healthy women should have admittance to accurate disability information after receiving a prenatal invalidity diagnosis.
Another problem is limited access to contraceptives. Contraceptives are crucial for people with disabilities, not only for preventing pregnancy but also for facilitating the menstrual cycle. However, people with mental retardation report that medical professionals ignored their contraceptive needs (Eager, 2017). Studies have shown that the gynecological conditions of women with intellectual disabilities are less likely to be met. However, they also suffer from premenstrual syndrome and other menstrual disorders with the same frequency as the general population (Agaronnik et al., 2020). Some doctors may not consider the difficulties that menstruation can create in people’s daily lives with mental retardation. Furthermore, they may also ignore the sexual needs of people with disabilities and ignore the risk of unwanted pregnancy.
Another problematic situation is limited access to preventive examinations. Pap smears and mammography are integral parts of preventive reproductive health examinations. However, there is disagreement regarding cervical cancer screening in women with intellectual disabilities due to the low rate of cervical cancer in women who do not have sex and the invasive nature of the test (Shrestha et al., 2022). A study conducted in 2017 among 290 mobile device users with intellectual disabilities showed that “41% of users had experienced problems accessing examination rooms or procedures in the last 12 months” (Agaronnik et al., 2020). Moreover, with these barriers, women with mental retardation are much more likely to develop cancer at later stages and have a higher mortality rate than their peers without disabilities.
Women with intellectual disabilities face higher rates of sexual assault and harassment than the general population. Furthermore, people with disabilities are more than three times more likely than people without this to be raped or sexually harassed, and women with mental retardation are 40 percent more likely to be abused by an intimate partner than women without disabilities (Carter et al., 2022). Studies show that the deep dynamics of power can contribute to an increased risk of sexual violence against people with disabilities (Shrestha et al., 2022). For example, researchers have found that people with intellectual disabilities form and rely on reliable support systems in their daily lives. Still, the people who make up these support systems, from family members to acquaintances and service providers, are also more likely to be guilty of sexual harassment.
Moreover, law enforcement agencies often do not report this violence, creating a vicious circle of irresponsibility and violence, which is often difficult to break for various reasons. This is because women with mental retardation are less likely than others to report abuse (Wickström et al., 2020). One study found an increased risk of STIs among adolescent girls with intellectual disabilities (Shrestha et al., 2022). Women with mental retardation are less likely to disclose their sexual activity. They are more likely to become victims of sexual violence, which leads to a potentially increased risk of contracting STIs. Studies show that women with disabilities have a similar or increased risk of contracting sexually transmitted diseases compared to other young people (DiMatteo et al., 2022). In contrast, girls with disabilities experience higher rates of such ailments than boys with disabilities (Carter et al., 2022). This leads to another acute problem since disabled people are more likely to face sexual violence, which leads to the need to have an abortion. However, this is not always possible due to limited access to termination of pregnancy and lack of consent from guardians.
Guardianship, or the legal right to make decisions regarding persons recognized as incapacitated, does not allow women with intellectual disabilities to fully exercise their reproductive freedoms. Several states allow family members or caregivers to request the sterilization of persons in care, which significantly impacts reproductive rights (Eager, 2017). Guardians also make decisions on behalf of the person under guardianship about contraceptives, abortions, sex education, and other critical factors for achieving reproductive freedoms. Supported decision-making allows people with disabilities to choose who will help them make decisions as part of a collaborative effort. Although it is still in its infancy, early government pilot programs and new legislation show that decision support positively impacts people’s mental health and self-esteem, making it a viable alternative to guardianship.
Sexual and reproductive health and rights are essential for human happiness and well-being and remain a primary concern for people of all abilities. Due to intersectoral stigmatization, social and economic marginalization, and lack of comprehensive sexual education and policies regulating reproductive function, people with disabilities are more vulnerable to human rights violations, such as forced reproductive activity (Agaronnik et al., 2020). Stigma and stereotypes significantly restrict the right to the sexual and reproductive health of girls with intellectual disabilities. The sexuality of people with disabilities is almost always considered taboo. Comprehensive, reliable, and inclusive sex education is crucial to ensuring the realization of reproductive rights for children with disabilities. In one study, adults with intellectual disabilities were more likely than the general population and adults with physical disabilities to state that they did not have all the sexual knowledge they would like to have (Eager, 2017). Providing the necessary information at an early age can help break down stereotypes and make it easier to make decisions about their sexuality and reproductive health.
Conclusion
Disability reproductive justice movements share several fundamental goals for strengthening bodily autonomy, self-determination, and community care. However, ableist assumptions contribute to a deep-rooted distrust or cynicism among the disabled community towards the reproductive rights movement. Healthcare providers and other authorities should work to eliminate ableism in their fields and restore trust in the disabled community. It is necessary to provide people with disabilities with access to the reproductive health care they need. Attention to the relationship between invalidity and reproductive justice has important implications for United States policy (Mercer, 2022). Understanding the barriers that prevent women with disabilities from gaining admittance to reproductive freedoms is a prerequisite for policy development. More research is needed in disability justice and the study of barriers. People with intellectual disabilities represent a well-known inequality in the population, and sexual health is a mainly ignored area of health care for adults with mental retardation. Primary health care providers can play an essential role in addressing this disparity by providing responsive and appropriate sexual health care.
References
Agaronnik, N., Pendo, E., Lagu, T., DeJong, C., Perez-Caraballo, A., & Iezzoni, L. I. (2020). Ensuring the reproductive rights of women with intellectual disability. Journal of intellectual & developmental disability, 45(4), 365-376. Web.
Carter, A., Strnadová, I., Watfern, C., Pebdani, R., Bateson, D., Loblinzk, J., & Newman, C. (2022). The sexual and reproductive health and rights of young people with intellectual disability: a scoping review. Sexuality Research and Social Policy, 19(1), 372-390. Web.
DiMatteo, E., Ahmed, O., Thompson, V., & Ives-Rublee, M. (2022). Reproductive justice for disabled women: Ending systemic discrimination. Center for American Progress. Web.
Eager, P. W. (2017). Global population policy: From population control to reproductive rights. Routledge.
Shrestha, P. S., Ishak, A., Maskey, U., Neupane, P., Sarwar, S., Desai, S., & Diaz-Miret, M. (2022). Challenges in Providing Reproductive and Gynecologic Care to Women With Intellectual Disabilities: A Review of Existing Literature. Journal of Family & Reproductive Health, 16(1), 9. Web.
Mercer, J. R. (2022). Labeling the mentally retarded: Clinical and social system perspectives on mental retardation. Univ of California Press.
Wickström, M., Larsson, M., & Höglund, B. (2020). How can sexual and reproductive health and rights be enhanced for young people with intellectual disability?–focus group interviews with staff in Sweden. Reproductive Health, 17(1), 1-10. Web.
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