“Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about—and formulate strategies for changing—discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction.”
— Anne Finger.
Introduction
Sexuality is an aspect of one’s life that is inseparable from the other complex layers of the human experience. It encompasses sexual self-expression, “sex, gender identities and roles, sexual orientation, eroticism, [sexual] pleasure, intimacy and reproduction.”
It influences one’s actions, self-esteem, behavior, thoughts, feelings of self-worth, and interpersonal interactions.
Legal scholarship has undertheorized how state systems that are central in the lives of people with intellectual and developmental disabilities
normalize the control and subjugation of intimate, sexual, and reproductive choices and how these systems exact enduring harms.
This Article is the first to apply a structural desexualization of disability framework to identify the invisible ways that legal, social, political, historical, and economic structures and norms act in concert within state systems to exact harm on people with intellectual and developmental disabilities in matters of sexuality. These structures and norms then work to create conditions of normalized human suffering.
This framework situates the structural desexualization of disability as a constitutive element in maintaining and perpetuating the sexual violence experienced by people with intellectual and developmental disabilities. In doing so, it identifies the structural desexualization of disability as the cumulative root cause of both the interpersonal violence and indirect forms of harm that this community experiences.
Individuals with intellectual and developmental disabilities share the same desire to experience love and intimacy, engage in sexual pleasure and sexual self-expression, and exercise choices around sexuality and reproduction as the broader population.
“Desexualization is the process of stripping disabled people of sexual agency and autonomy.”
It is the loss of self-determination in matters of sexual self-expression and reproduction.
It is the erasure of one’s “sexual identity or experience.”
It creates often-insurmountable barriers to engaging in sexual desire or choosing to be the object of sexual desire.
The structural desexualization of disability is experienced through the day-to-day indignities that result from the stripping of: sexual agency; sexual self-determination; and opportunities to engage in sexual self-expression, pleasure, and desire. It is embodied through the erosion of personhood, loss of bodily autonomy, diminishment of self-worth, and other losses of dignity that result from this desexualization. It is felt as a result of the barriers erected that limit opportunities to develop healthy sexual and intimate relationships; make reproductive choices; and access sexual health education, supports, services, and reproductive care. It is experienced through the withholding of knowledge and information on how to protect one’s body and how to identify when one’s body is violated.
The breadth of what sexuality encompasses in one’s life speaks to “[t]he magnitude of damage” that flows from the structural desexualization of disability.
Consider the case of Britney Spears. Spears gained nationwide attention following the release of her testimony in court for the removal of the thirteen-year conservatorship
to which she was subjected by her father. In her hearing to remove her conservatorship, Spears testified:
I want to be able to get married and have a baby. I was told right now in the conservatorship I’m not able to get married or have a baby. I have an [IUD] inside of myself right now so I don’t get pregnant. I wanted to take the [IUD] out so I could start trying to have another baby, but this so-called team won’t let me go to the doctor to take it out because they don’t want me to have children, any more children. So basically this conservatorship is doing me way more harm than good.
To those familiar with conservatorship, Spears’s testimony was not a “bombshell”
or “stunning assertion[],”
as maintained by media outlets and pundits who questioned the legality of whether Spears could be forced to maintain birth control under conservatorship to avoid pregnancy. Rather, Spears’s testimony illustrates the normalized sexual and reproductive control that is inflicted through the “coercive function[]” of conservatorship.
As Spears wrote in her 2023 memoir, The Woman in Me, “The conservatorship was created supposedly because I was incapable of doing anything at all—feeding myself, spending my own money, being a mother, anything.”
Through the appointment of a conservatorship, the court determined that Spears lacked “legal mental capacity” to make decisions about her life.
Spears’s father became the court-appointed conservator of Spears’s “person” and of her estate
until the court dissolved the guardianship in 2021.
Under her conservatorship, Spears reverted to the legal status of a minor with her father assuming the legal right to make plenary decisions over all aspects of her personal and financial life.
In her memoir, Spears further expressed, “My dad took my boyfriend away and I could not drive. My mom and dad took my womanhood from me.”
She concluded a chapter of her book by sharing what her father said shortly after he was appointed her conservator: “I just want to let you know, . . . I call the shots. . . . I’m Britney Spears now.”
Is it viewed as a form of harm and suffering when the guardianship system strips someone of their choices around intimate relationships, marriage, childbearth, and parenting? How would disability law and policy change if the removal of these vital decisions was viewed as harm that is built into the structures of society?
The outrage that swelled through the #FreeBritney movement
was arguably propelled by Spears’s whiteness, wealth, and international recognition, which still could not shield her from having her sexual and reproductive decisionmaking rights controlled through a state process. Take these privileges away, however, and the outrage disappears. It is well documented that people with intellectual and developmental disabilities
—a population that lacks access, privilege, and economic capital
—have long endured control over their intimate, sexual, and reproductive decisionmaking through guardianship and other means. For disabled people who live at the intersection of marginalized identities, such as being Black, Indigenous, transgender, or queer, this control is often rote, exacted through societal processes and norms.
But, unlike Spears, these deprivations are not elevated to importance in national dialogue.
They remain in the shadows, viewed largely by society as a natural aspect of what is required to protect this population.
The predominant “focus on violence, abuse, victimization, stigmatization, and control” results in, “at best,” individuals with intellectual and developmental disabilities “receiving little to no education about sexuality and reproduction and/or having their opportunities for sexual expression taken away, and at worst, contributes to eugenic practices.”
When national attention is given to issues of sexuality and people with intellectual and developmental disabilities, the focus is often on stories that sensationalize
acts of sexual violence
against this community. These stories emphasize a victim–perpetrator binary: There is a victim who experienced identifiable harms and a perpetrator to hold accountable.
This binary view focuses on an interpersonal, individualized form of harm, which results in a dominant sexual violence narrative. The victim–perpetrator binary consumes and narrows society’s view of sexuality for people with intellectual and developmental disabilities. Discourse is confined to the individualized harm, victimhood, and the need for protection, thereby reinforcing a sexual violence narrative.
This view of sexuality attracts media headlines, which often surface fleeting conversations around what protective measures must be taken to safeguard intellectually and developmentally disabled people from this form of violence.
In recent media, NPR reported on the disproportionate rate at which people with intellectual disabilities experience sexual violence, using unreported data from the DOJ.
The data showed “people with intellectual disabilities are sexually assaulted at rates more than seven times those for people without disabilities,”
with NPR using sensationalized language to describe this violence against the intellectually disabled community: “[T]hese women and men are easy prey for predators . . . .”
Further, laws and policies designed to address sexual violence often focus on the victim–perpetrator binary, thereby limiting possibilities for change that addresses structural harms. This emphasis reifies the ascription that a diagnosis of intellectual or developmental disability is incompatible with exercising the range of choices available and related to one’s sexuality—sex, developing and maintaining intimate relationships, marriage, engaging in sexual pleasure, and having children, to name only a few examples.
This ascription is reflected through laws that limit the sexual and reproductive choices of people with intellectual and developmental disabilities.
Scholars are looking beyond the interpersonal narrative of violence to think more critically about its unseen impact, structural causes, and lasting consequences. By applying a broader understanding of violence, scholars such as Professor Erika Wilson are capturing the extent of violence’s hold on maintaining oppressive systems such as racial segregation in the public education system.
Similarly, Professor Allegra McLeod argues for the necessity of “expand[ing] our understanding of violence beyond individualized disorder and the immediate scene of interpersonal harm” to stop gun violence.
Professors Stephen Lee and Rabia Belt are further pushing the boundaries of how violence is conceptualized to surface the mounting—but less visible— harms that are a result of incarceration and immigration detention.
Social science scholars in the last half century have also developed new ways to think about violence and its root harms beyond the interpersonal.
The structural desexualization of disability framework builds on this literature by shifting attention away from the victim–perpetrator binary of sexual violence that is most often applied to people with intellectual and developmental disabilities. This framework provides for a deeper inquiry into the causes of sexual violence that are not readily visible through a victim–perpetrator binary lens. In doing so, it exposes the extensive and cascading harms that are committed through systems, structures, and the state by the structural desexualization of disability. It further situates what role the state plays in maintaining—and should play in preventing—these harms.
Specifically, this Article examines three disability systems through the structural desexualization of disability framework: guardianship, special education, and the government-funded service system that provides community-based supports to people with intellectual and developmental disabilities. These systems dictate the level of control that is relegated to the sexual and reproductive choices of individuals with intellectual and developmental disabilities. By examining the disability systems “that shape [the] risk and local reality”
of sexual victimization, this Article proposes strategies for ameliorating sexual violence and its cascading harms. It further aims to encourage discourse, advocacy, policymaking, and organizing around the breadth of issues that affect sexuality by reframing the victim–perpetrator binary to reposition sexuality as a community integration priority under Title II of the Americans with Disabilities Act (ADA) for people with intellectual and developmental disabilities.
The use of an expansive definition of sexuality centers the role of interdependence
in the application of the structural desexualization of disability framework. In applying this framework, the intellectually and developmentally disabled community is not treated as a monolith. There is a “physical, cognitive, and psychological impact” that emerges from the lived experience of disability, which must be recognized and embraced when examining issues of sexuality and disability.
Disability justice advocate Lydia X.Z. Brown explains, “[T]he experience of disability and being disabled is the result of the interaction of a person’s inherent differences with a society and its attitudes and policies.”
Individuals with intellectual and developmental disabilities need varying degrees of support
in making informed choices related to sexuality.
Supports alone, without confronting the systems and structures that maintain the desexualization of disability, will not achieve change.
The structural desexualization of disability framework does not jettison the victim–perpetrator binary. Rather, it suggests that a broader structural framing that examines the roots of sexual violence on the intellectually and developmentally disabled community is necessary. Any amelioration efforts that address sexual violence against people with intellectual and developmental disabilities must first confront the structures that maintain this violence—and identify the complicit role of government systems in exacerbating it. As expressed by political theorist Mathias Thaler, “how we conceptualize violence affects what we do to contain and mitigate it.”
Part I of this Article examines the history and role of the law in desexualizing disability. It explores how the structural desexualization of disability is an unintended consequence of the advocacy movement for community integration under Title II of the ADA, which prohibits disability-based discrimination by state and local governments. Part II discusses the inadequacy of the victim–perpetrator binary of sexual violence. It then introduces the structural desexualization of disability framework. Part III applies this framework to three central disability systems that people with intellectual and developmental disabilities must navigate: guardianship, special education, and the government-funded system that provides community-based supports and services. Part IV concludes by offering strategies to reconceptualize sexuality as a community integration priority through state and other interventions.