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This blog was written by Miriam Heyman, PhD. Program Officer at the Ruderman Family Foundation.
We all know that the 14th of February is the infamous day of candy and flowers and love cards. But few know that Valentine’s Day commemorates Saint Valentine, who became a hero by presiding over illegal weddings. The Roman Emperor didn’t want weddings to occur during times of war, and Saint Valentine ignored this edict. He was jailed and eventually executed for his crime. Today Americans celebrate Valentine’s Day with the purchase of one billion cards and about 35 million heart-shaped boxes of chocolate. As a person living in this modern era of sweet and chocolate-infused glutton, I remind myself that Valentine’s Day wouldn’t exist without a historical backdrop in which it was illegal for people to marry. Most of us think that this kind of discrimination is largely behind us, especially since marriage equality for gay people became the law of the land. However, the fact is that people with disabilities still today struggle for the rights to form and sanctify the types of relationships that we all treasure. Let me explain.
In the United States, we have a legacy of forced isolation for people with disabilities. Within the not-too-distant-past, doctors advised parents to skip life-saving medical intervention for babies with disabilities. If these babies did survive, doctors informed parents that the best option was to institutionalize the children, and render them isolated from society and deprived of the opportunity to make friends or form romantic partnerships. Parenting, which is often a culmination of romantic relationships, was explicitly forbidden. In 1927, the Supreme Court of the United States upheld forced sterilization for people with intellectual disabilities. In the infamous Buck v. Bell case, the decision supporting forced sterilization of a particular individual was backed by the argument that “three generations of imbeciles are enough”.
We as a society have acknowledged many of these mistakes (although the issue of parenting remains contentious, as questions around sterilization occasionally emerge, and parents with disabilities are over-represented in the child welfare system, which at least partially reflects the enduring notion that disability and parenting are incompatible) (Lightfoot & Slayter, 2014). We now recognize that many romantic desires and experiences are almost universal, regardless of disability. For example, most people want romantic relationships, being in a relationship is associated with positive mental health outcomes regardless of disability, and people vary with regard to how they express themselves sexually and how much they know about sex (Rushbrooke, Murray, & Townsend, 2014). Furthermore, national data show that teenagers with disabilities do not have less sexual experience than their peers without disabilities (Murphy & Young, 2005).
None of this is particularly surprising. What is surprising, or at least upsetting, is that we continue to infringe on the social and romantic freedom of PWD. For example, in one recent study, people with intellectual disabilities reported excessive caregiver supervision, which resulted in a lack of privacy and some really awkward moments (Rushbrooke et al., 2014). Sometimes support providers attempted to alleviate the tension by making jokes, but these jokes ended up humiliating the clients. Just as they were about to get it on. Also, for the PWD that do have romantic or sexual relationships, we are denying them access to critical information about birth control, sexually transmitted diseases, and mental health in the context of sexuality. Adolescents and adults with disabilities widely report the need for more education in these areas (Murphy & Young, 2005). And parents report that they often don’t provide this critical information to their children with disabilities, because they fear that providing this information will lead to relationships that are ultimately exploitative (Richards, Miodrag, & Watson, 2006).
So what are some solutions? First we have to recognize that intentionally or not, we infringe on the rights of PWD to engage in romantic relationships. We do this through denying access to sexual education, establishing housing that lacks privacy, and sometimes insisting on inflexible support and supervision policies. These tendencies reflect pervasive attitudes. One study found that disability professionals were more likely to view sexual behaviors as appropriate when these behaviors were displayed by people with more moderate disabilities, and less likely to consider these behaviors to be appropriate when the disabilities were more severe (Wolfe, 1997). The need for romantic connection is relevant for all, regardless of disability type. Attitudes and practices must reflect this universality.
Positive practices include information and services that are tailored to individual needs. For example, the early onset of puberty is a characteristic of several developmental disabilities, and early puberty can make youth (especially girls) feel self-conscious and insecure. Professionals such as health care providers and school counselors need training on these issues, so they can work with young women to increase their self-esteem, a necessary foundation for healthy sexuality (Murphy & Young, 2005). In light of the societal standards of beauty that so often exclude people with disabilities, self-esteem should be a key component of all sex education curricula (Richards et al., 2006).
Finally, in the spirit of Valentine’s Day, people of all abilities should have the freedom and support to find meaningful relationships with whomever they choose. On Valentine’s Day and every other day, let’s celebrate all forms of love, and all different abilities.
Lightfoot, E., & Slayer, E. (2014). Disentangling over-representation of parents with disabilities
in the child welfare system: Exploring child maltreatment risk factors of parents with disabilities. Children and Youth Services Review, 47(3), 283-290.
Murphy, N., & Young, P.C. (2005). Sexuality in children and adolescents with disabilities. Developmental Medicine and Child Neurology, 47(9), 640-644.
Richards, D., Miodrag, N., & Watson, S.L. (2006). Sexuality and developmental disability: Obstacles to healthy sexuality throughout the lifespan. Developmental Disabilities Bulletin, 1, 137-155.
Rushbrooke, E., Murray, C., & Townsend, S. (2014). The experiences of intimate relationships by people with intellectual disabilities: A qualitative study. Journal of Applied Research in Intellectual Disabilities, 27(6), 531-541. doi: 10.1111/jar.12091
Wolfe, P.S. (1997). The influence of personal values on issues of sexuality and disability. Sexuality and Disability, 15(2), 69-90.
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