Structural Barriers to Sexual Autonomy for Disabled People

Vol. 38 No. 2

By

Bethany Stevens is a faculty member and policy analyst for the Center for Leadership in Disability in the Institute of Public Health at Georgia State University.

Disabled people face structural and attitudinal barriers when seeking sexual and reproductive autonomy; paying for pleasure is the consequence of punitive medical and legal systems in the United States. Myriad problems could be presented in this article, however, for the sake of brevity, the focus will be on five structural barriers to sexual health: (1) lingering effects of anti-sodomy statutes, (2) Supplemental Security Income disincentives to marriage, (3) lack of accessible and culturally competent sexual and reproductive information and care, (4) legal intervention to deny parental rights, and (5) removal of sexual freedom in institutions and nursing facilities. Each of these barriers provides illustrations of how medicalization, policy, and law work in concert to perpetuate ableism—the system of social power that simultaneously exalts and enforces normalcy, as well as excludes and devalues disabled people.

Social Residue of Anti-Sodomy Statutes

Until the 2003 Supreme Court decision Lawrence v. Texas (539 U.S. 558) thirteen states had laws that criminalized the majority of sexual activities by permitting only heterosexual coitus or penis-vagina penetrative sex (PV sex). Thus, in some states, people could and were criminalized based on consensual pleasurable sexual acts. It is important to note the majority of people targeted by anti-sodomy laws were lesbian, gay, bisexual, transgender (LGBT) and queer people, but disabled people were also targeted. Criminalizing sodomy negatively impacted disabled people because many, especially those with mobility impairments, chronic fatigue, and pain, cannot engage in traditional PV sex, and therefore did not fall into the narrow category of legal sexual activity.

Legislating sexual activity works to institutionalize its morality. Additionally, in making sexual activity illegal, it marks and stigmatizes those who are associated with that activity as criminal. This issue has been central to the LGBT and queer movements because of the negative impacts of the conflation of sexual activity (and its criminality) with the entirety of their identities—reverberating in realms such as discrimination in housing, employment, and health care.

Though the legal status of sodomy has changed, much of the cultural residue of conflation of sexual identity and criminality remains today. Certainly, the demonization and violence against LGBT and queer people speaks to the continued animus toward them, but there is more to this nexus to unpack. The criminalization of sodomy points to the need to deconstruct what “real sex” entails. All too often, people concede to the culturally produced narrative that sexual activity should be performed by particular bodies in certain ways—i.e., heterosexual, nondisabled, white, young, fit, etc. bodies moving in normative heterosexual coitus modes. This pervasive understanding of sexual performance is influenced by “pornified sexual expectations” (Paula, 2005) and the “grammar of embodiment” (Garland-Thomson, 1997).

Pornified sexual expectations entail the proliferation of pornographic materials and the assertion that they encourage individuals to believe that sexual activity must be performed in a manner similar to that portrayed in pornography (e.g., achieving simultaneous orgasm without much verbal communication, while maintaining perfect hair and makeup). The majority of people do not achieve simultaneous orgasm, most women (regardless of ability) do not achieve orgasm from PV sex alone, and most people do not look culturally “beautiful” while orgasming. In this way, if “real sex” is deconstructed, it can serve as a needed catalyst toward adopting inclusive principles and practices of accessing sexual pleasure.

Financial Disincentives to Marry

Social Security’s Supplemental Security Insurance (SSI) disincentives to marriage continue to place many disabled people in the position of deciding whether to marry or cohabitate and lose benefits; or remain single to retain life-sustaining benefits. According to the American Community Survey conducted in 2003 by the U.S. Bureau of the Census, 38 percent of working-age people with at least one disability were employed in 2003, compared with 78 percent of people reporting no disability. Of those disabled people who do not work, two-thirds assert they would like to. However, SSI and reliance on state and federal subsidized health insurance keep most disabled people in a poverty trap. The political economy of disablement is egregious by keeping disabled people at a living wage that is below the poverty line, and it has a negative impact on their sexual and reproductive autonomy.

Since the early 1980s, disability lawyers and scholar-activists have demanded change in SSI disincentives to marriage. These disincentives manifest through the calculation of a partner, spouse, or cohabitant’s income as part of the disabled person’s income. The Social Security Administration contends this is to recognize that two people living together are in a better financial position than those living alone. However, anyone who has lived on SSI—which in many states is 75 percent below the poverty line—knows that only dollars can change the way a month is lived. The legal pressure to remain single forces many to conceal marriages or not marry at all; for some, this means they cannot have any sexual activity or reproductive autonomy. SSI disincentives are imbued with eugenic ideology because for many disabled people, this barrier prevents procreative sex between heterosexual disabled people.

Inaccessible Sexual and Reproductive Health Care

In many settings, disabled people lack physically and culturally accessible sexual and reproductive health information and care. Disabled people experience a host of physical inaccessibility (from architecture to exam tables), as well as negative values and thoughts expressed because many medical professionals lack cultural competence concerning disability issues. This is particularly apparent for intellectually and developmentally disabled people—as medical professionals often do not know how to break their concepts into accessible components for people to understand. Medical professionals all too often assume disabled people are only their disabilities—reifying the medical model of disability that asserts the problem of disability is a personal, rather than social, one. Thus, medical professionals often assume disabled people should only see doctors associated with their disability (e.g., neurologist, orthopedist, psychiatrist) instead of treating the whole person. In terms of sexual health and reproductive health, this issue is incredibly problematic, as disabled people are not asked about their sexual history, not asked about the need for contraception, and are often denied any information concerning sexuality. All of these barriers to information and protection create problems for sexual autonomy for disabled people. Medical professionals must learn how to talk about sexuality, as this problem of inadequate ability to communicate about sexual health is bigger than disabled people.

Medical professionals also must be taught a new form of cultural competency because the one being used now simply does not do enough. Traditionally, cultural competency hinges on knowledge and tolerance toward racial and ethnic minorities, as well as increasingly people with diverse sexual orientations and genders. This framework does not promote a disability-inclusive understanding of culture, nor does it take into account the psychosocial mechanics of social power and privilege noted in systems of oppression. Furthermore, traditional understandings of cultural competency are built on the assumption of a monolithic understanding of identity markers (i.e., all women have the same issues) and does not take into account the multiple social positions a person can inhabit.

Disability can be seen as the catalyst to develop an intersectional and inclusive understanding of culture. Disabled people are members of every aspect of society—i.e., every race, ethnicity, gender, sexual orientation, political and religious affiliation, and so forth—therefore, by including disability in the discussion of cultural competency, clinicians and researchers will be instructed on how to deploy an intersectional understanding of identity. Beyond an understanding of intersectional identities, this model examines how the institutions of power related to identity markers—such as ableism, racism, homophobia, transphobia, sexism, and classism—are mutually constituted and interwoven.

As social epidemiologists, such as Nancy Kreiger, confirm, these forms of social oppression manifest in emotional, psychological, and physiological ways that include depression, hypertension, anxiety, and heart disease. In exposing the interlocking nature of oppression, medical professionals can learn ways to effectively work with communities and individuals to break apart interlocking systems of power and divest unearned privilege.

Prevention of Parenting Rights

Another crucial issue in the lives of disabled people is the experience of legal intervention to deny parental rights. Denial of parental rights occurs across types of disabilities but occurs perhaps most fervently with intellectually and developmentally disabled people—as in many cases they lack the autonomy to consent to sexual activity, the choice to reproduce, and the ability to retain children after birth. A recent example of a disabled person losing parental rights occurred in March 2011 in California when a quadriplegic mother, Abbie Dorn, lost visitation rights of her triplets. Though she became disabled during the birth of her children, she was denied visitation rights based on her physical functioning, which includes full-body paralysis and the limited ability to communicate only through blinking.

Far from an anomaly, this is only one of many news stories in which disability is determined to be a condition that precludes adequate parenting skills. All too often, Protective Services are called to intervene and remove children based on a parent’s disability status. Disability status is often used against disabled parents in custody battles by positing disabled people are “unfit” and as parents are not in the “best interest of the child” (e.g., Brownstein, 2009; Fisher, 2007). Legal denial of parental rights is socially enforced through commentary about disabled people in media coverage. Popular media emphasizes a lacking ability or right to parent one’s children.

Denial of Sexual Freedom While Warehoused in Institutions

The removal of sexual freedom in institutions and nursing facilities persists to be a problem. The population of institutions and nursing facilities is as inflated as the prison industrial complex—with a population of about 2 million disabled and aging people. Though there are increasingly more lawsuits and settlements occurring with the Department of Justice related to implementation of Olmstead v. L.C., 527 U.S. 581, 119 S. Ct. 2176 (1999), disabled people continue to be warehoused and used as a source of profit. Even after settlements, the force of employees advocating for their jobs in these facilities often halts the process of deinstitutionalization. Many rural towns are dependent on the expansive spaces of institutions for their local economy.

At these institutions, every aspect of one’s life is monitored and controlled—from the time to eat to bathe to sleep—causing countless human rights violations. Additionally, in most of these settings, sexual activity is denied. While there is often a policy in place preventing such activities, accounts of rapes and other forms of sexual violence occur, often perpetuated by supposed “care” givers. In the limited amount of cases where sexual activity is permitted, it is generally only heterosexual marital sex that is allowed.

Call to Action: Enacting a Politic of Cripsex

To enact the legal and social changes needed for disabled people to have sexual and reproductive autonomy, a politic of cripsex must be employed. The term “cripsex” uses the political power of the shortened (from cripple) and reclaimed word “crip” to express the political nature of the sexuality of disabled people. Politicizing sexual pleasure and oppression of disabled people through enacting cripsex is a powerful way to affirm our humanity.

Mary Calderone, the cofounder and former president of Sex Information and Education Council of the United States (SIECUS), stated, “sexuality means everything that you are, that you were born with, that you experienced, that you thought about, that happened to you, that related to you being a sexual person.” This quote underscores how oppression and other forms of violence can impact disabled people’s personhood, but it also speaks to celebrating their bodies however they are. Both Calderone’s quote and the definition of sexual health set forth by the World Health Organization make clear that sexuality is for all people—it is part of personhood. Being deemed a “person” or sexual is not contingent on ability—contrary to popular belief.

The issues addressed in this article speak to both the need for policy and advocacy driven by the voices and needs of all disabled people. Intersecting aspects of identity and personhood must be accounted for in order to make spaces, especially those that deliver health care, truly accessible to all types of disabled people. SSI must be reformed so that disabled people are not kept in poverty and thereby denied access to many aspects of life, nor should they be denied access to marriage. Their right to parent must be embraced legally and socially. Institutions and nursing facilities must be shut down, not just because the Supreme Court decided it in Olmstead, but because those with disabilities are people and deserve the recognition and protection of their basic human rights.

Much like with addressing the issue of hate crimes, law and policy must work along with community-based movement building to truly shift minds to embrace disability in the nation’s culture. It may be useful to go beyond the issues expressed in this article and think about revolutionary ways of embracing disabled people, particularly concerning sexuality and reproduction.

Certainly, all disabled people, including those in special education who are currently denied the right, should have access to sexual education—knowledge about anatomy, autonomy (including when to say “yes” and when to say “no” to sexual activity), and understanding that desire and pleasure are human rights that everyone should have regardless of whether lingually and spatially ghettoized in special education or as people with “special needs.” The term “special” is contentious because it conflates structural problems with the body.

Recognition and expression of sexual autonomy has many health benefits, including analgesic effects, hypertension reduction, and increased relaxation. Many of these positive effects actually can counteract some of the negative impacts associated with ableism or other forms of discrimination.

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