In 2-3 sentences, explain the assumptions you previously had about sex and disability?
L1: Societal and Cultural Perceptions about Sexuality, Sensuality, Reproduction, and Disability
Sex is a controversial topic for many individuals and cultures. Factor in disability AND sexuality and you will probably find that many people view this as a double-taboo. There are a variety of misconceptions and assumptions that are made about people with disabilities and their intimate relationships. These misconceptions, unfortunately, have negative consequences. In this chapter, we hope to assess societal perceptions around disability and sexuality and facilitate new insights that will empower the reader, as well as people with disabilities.
Did you know that individuals with disabilities can have sexual relationships and create romantic connections? If you did, then you are one step ahead. The fact is that, in general, people with disabilities are as sexual as nondisabled people. They have a variety of sexual interests, urges, and orientations. They are sexual and sensual beings. They have the ability to enjoy fulfilling sexual relationships. And they can impregnate, be impregnated, and give birth to offspring. However, studies have shown that the attitudes and perceptions toward disability and sexuality are predominantly based on the assumption that people with disabilities are asexual. This is due in part to predominant assumptions about what is normal. We all have our own ideas about what normal looks like, and what a “normal” sexual or romantic relationship looks like. Normal can be defined as “the belief that there is an essentially correct way to have been born, look like and be” People with disabilities continually find themselves judged and categorized as “abnormal” at the hands of ableist definitions of normal. We will attempt to unpack these long-held misunderstandings and to reinforce the idea that disability is a normal part of the human experience, even when it comes to sex.
The concept of “normal” in relation to people with disabilities and their sexuality is harmful. Not only is it harmful to people’s dignity, as well as opportunities for intimate relationships, but in the case of people with developmental and intellectual disabilities, it is harmful because they are disproportionately sexually abused and assaulted when compared to nondisabled people. Not only are they viewed as “abnormal,” but perpetrators of abuse and assault view them as “easy targets.” They actually can be easy targets, not necessarily because of cognitive limitations, but because of social isolation, lack of access to sex education, as well as the practice of compliance training within their educational and home experiences. These societal factors combined weigh heavily on a person’s ability to distinguish healthy relationships from unhealthy relationships. They increase the likelihood of abuse because of facilitating helplessness and victimization.
This is only one reason why faulty assumptions about people’s sexuality are problematic. There are many more reasons. There are probably as many reasons why ableist misconceptions hurt as there are people living the experience of being disabled in an ableist world. People with other disability experiences are also affected by societal perceptions about disability, sexuality, relationships, and what is normal. Regarding people who experience physical disabilities, society might carry the misconception that they are physically incapable of engaging in sexual activities, their reproductive system does not work or is not there, or they do not have the same desires as a person without a disability. They are often perceived as asexual or considered unsuitable as a sex partner or life partner. Many of these individuals share about the challenges of finding a meaningful relationship and sexual intimacy. For someone with an invisible disability, such as a mental health disability or medical condition, reactions based on societal misconceptions might occur once the person has disclosed their disability to their partner. Fear of subsequent rejection or inability to understand can be a barrier to healthy relationships.
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Perceptions in the Media
Consider what you have seen in the media. What have you noticed about how people with disabilities are portrayed in terms of sex and sex appeal?
In the media, it is common for people with disabilities to be portrayed through a medical model lens. They are often outcast, dependent, presented as pitiful, and as a tragedy or charity case. They are far from “sexy.” In recent years, the media has taken a more progressive stance on disability and is slowly changing the way that people with disabilities are being portrayed. Advertising agencies are now showcasing people with disabilities in a positive light. But many disability advocates and researchers argue that progress is happening too slowly. Some also take offense to the notion that even those limited representations are of people with disabilities who “fit the mold” of normalcy in terms of the body, beauty ideals, and other societal concepts of sexiness. All in all, token expressions of progress pale in comparison to continued ableism and injustices experienced by people with disabilities.
Which of the following best describes the societal and cultural perceptions about disability and sexuality?
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A. The media accurately depicts people with disabilities when it comes to sex and disability.
B. The sex lives of people with disabilities are considered normal and embraced.
C. People with disabilities are perceived as asexual beings.
D. All of the above
L2: Explore the impact of societal perspectives on sex education, abuse, and equitable access to relationships, sex, and self-determination of people with disabilities
Sara and Alejandro have 3 children. Sara is nondisabled. Alejandro was born with cerebral palsy and uses a wheelchair. They have a healthy sex life. One of their neighbors, during a conversation with another neighbor, commented on how she thought it was amazing that they could use artificial insemination to be able to experience the joys of parenting.
What stands out as problematic in this scenario? What faulty assumptions has the neighbor made?
Miriam is a woman with a physical disability. She uses a scooter and crutches for mobility. She is known for her beauty, intelligence, generosity, and wicked sense of humor. Miriam’s Catholic parents immigrated to the United States from Lebanon. Arranged marriages are common in her culture. However, it has been difficult for her family to find a man willing to give her a chance because of her disability. Miriam is 35 years old and is a successful attorney. She would like to one day get married and have a family. But she has given up on finding a partner from her own culture and is now exploring online dating. For companionship, she also has adopted 2 dogs from a local shelter and is finding peace as a single professional, creating a home filled with love.
What barriers are preventing Miriam from finding a life-long companion and achieving her goal of marriage and children?
Andrew is an attractive man who experiences autism. He was in segregated special education classrooms from elementary through middle school and then was fully included in general education classrooms throughout high school and community college. Andrew has a solid job with a middle-class income. He is 40 years old and is a virgin. He is also bisexual. Although he is bright and popular and would like to be in a relationship, he sometimes feels like his many friends push him away when he expresses interest in dating them. Andrew has been seeing a therapist to help him explore his interactions with his friends and to assist him in securing a sexual relationship.
What societal factors might be contributing to Andrew’s lack of a sexually intimate relationship?
Selena and Joseph met at a club and have become intimate partners over the last several months. Selena has an invisible disability and experiences painful episodes related to her past as a cancer patient. She has not disclosed this to Joseph because she doesn’t want to scare him away and she doesn’t want his pity. She cannot predict when the pain will be triggered. Recently, on several occasions, when she and Joseph got together with plans including sexual interactions, their plans changed due to Selena not feeling well. Joseph is frustrated and feels like Selena is making excuses. He believes that this is an indication that she is no longer interested in pursuing a relationship with him. Selena is at a crossroads and has to decide whether to disclose her disability or let go of the relationship.
What is Selena’s dilemma? On what are her fears based?
Marco is a fun-loving, athletic young man. He has a few close friends but is guarded in forming new friendships due to experiencing bipolar depression and feeling like he doesn’t want to burden people with his mental health issues. He attended a bonfire gathering at the beach and became instantly interested in Lucy, a spirited SDSU student. He found the courage to ask her out and they have been dating for a couple of months. He is really into Lucy. Marco is undergoing heavy stress at work and is starting to feel a spiral downward toward depression coming on, his meds are not working, and he doesn’t know how to broach the topic with Lucy. He is noticing a change in his sexual desire and is becoming frustrated as Lucy is beginning to blame herself for not being attractive enough. He has yet to disclose his mental illness to Lucy due to fears that she will end the relationship.
What would you do if you were Marco? What would you think if you were Lucy?
All of the above scenarios are similar because
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- All of them are about people with developmental disabilities.
- All of them have disabilities and are asexual beings.
- All of them are at high risk of contracting sexually transmitted diseases.
- None of the above
L3: Controversial Issues Related to Sex and Disability
There is sex therapy, also known as sex surrogate, services available for individuals who might not have access to intimate touch or relationships. It is a paid service which is offered to improve the quality of life of individuals who aim to feel physical touch and connectedness, and/or sexual intimacy, but have not been given the opportunity. Sex therapy serves as education about an individual’s body and the bodies of current and potential partners. It is also available to those who may have experienced sexual trauma and anxiety in intimacy. Sex therapists help people overcome those traumas so that they can participate in healthy intimate relationships.
These highly controversial sex therapy services are often posited in the line of judgmental fire. Not only does this topic make people uncomfortable for religious and moral reasons, but also for reasons related to ableism itself. Some people believe that sex therapists are overrated prostitutes or people with depraved indifference to moral propriety. However, some would assert that there is an underlying ableist foundation that feeds the fire of controversy when it comes to sex surrogacy services. The assumption that people with disabilities are asexual or even subhuman and do not have the same human needs, including sex and intimacy, makes it easy to dismiss sex surrogacy services as not legitimate and valuable. Disability advocates argue that access to intimacy and relationships is a fundamental human right. For many people with disabilities, at this point in time, the only access they have is through sex therapy or surrogacy services. To disregard these services is to deny people not only the opportunity for sex and intimacy but also their right to have access to it.
Top Hat Question: Which of the following best explains the purpose of sex therapy/surrogacy for people with disabilities?
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- To have access to sexual intimacy and pleasure by a means of education, healing, and professional support
B. To get through the loopholes of hiring illegal prostitutes
C. To allow people with disabilities to have a child without having to carry a baby on their own
D. To prevent abuse and assault of people with disabilities
To learn more about the practice of sex therapy/surrogacy for people with disabilities, click here:
There are many misconceptions about conception (pun intended) when it comes to people with disabilities. Can they reproduce? The answer is yes they can. How they conceive and start families depends on the needs and abilities of individuals and partnerships. People who experience spinal cord injuries, for instance, are often subjected to questions such as: Is pregnancy still an option? How can it be achieved? Does their genitalia still work? People in this situation may need additional support to obtain their reproductive goals, but each person’s body is different, and answers to those questions are different based on individual bodies. Some people might utilize in vitro fertilization while others are able to achieve pregnancy through sexual intercourse. Others might not be able to get pregnant but are able to have families by means of adoption. Some individuals might use sex therapy services to educate themselves about how they can achieve their reproduction goals. Simply having a disability does not determine one’s ability or inability to reproduce.
Involuntary sterilization has been forced upon people with developmental and intellectual disabilities for centuries. Coinciding with the Eugenics movement, in the late 1800s and early 1900s, hundreds of thousands of women and men with disabilities were sterilized without their consent. On a global level, this movement went even further, requiring people with disabilities to be sterilized. The Eugenics movement aimed to eliminate “undesirables” in society to create a pure human gene pool.
“The first state law allowing sterilization of people with disabilities was passed in Indiana in 1907, to prevent “…the procreation of confirmed criminals, idiots, imbeciles, and rapists.” Other states soon passed similar legislation, often referring to candidates for sterilization as “feebleminded” – an astoundingly broad term that encompassed everything from an inability to “appreciate moral ideals” to impairments of hearing or vision. Many of the people who were forcibly sterilized were residents of mental institutions, and they often weren’t even told what was being done to them. In many cases, they were led to believe they were having an appendectomy. The government of California was particularly extreme, eventually sterilizing approximately 20,000 people.”
Source: ABC Law Centers
Although the focus of sterilization today is no longer based on eugenics, the controversial practice continues to play out in families with developmentally or intellectually disabled loved ones. In many families, there is an understanding that sterilizing their family members will make caring for them easier, eliminate the possibility of unwanted pregnancy, and overall, ensure a good quality of life for the individual.
Proponents of sterilization argue that sexual abuse or assault might lead to an unwanted pregnancy. Since individuals with intellectual disabilities typically do not access to sex education, families and guardians fear sexual activity could be practiced without the individual understanding the ramifications of engaging in sexual activities. Another caregiver rationale for sterilization is to eliminate menstrual cycles. Some women with intellectual disabilities are unable to independently use hygiene products and stay hygienic while menstruating.
Anti-Sterilization advocates assert that sterilization may prevent unwanted pregnancies, but it does not prevent sexual abuse and assault. As individuals with disabilities are 7-10 times more likely to be the victims of sexual abuse and assault, they argue that education about consent, boundaries, and healthy relationships can decrease both unwanted pregnancy and sexual abuse and assault. Opponents suggest that sterilization for hygiene purposes is a matter of convenience for the family member or guardian and not necessarily in the best interest of the individual.
Many people with intellectual disabilities are conserved. This means that they have a legal guardian, or conservator, who has the right to make all decisions for them, including decisions related to sex, reproduction, and sterilization. Basically, conservatorship takes away individuals’ rights and gives them to someone else. This may seem like the right thing to do from a family and community perspective. The goal is to ensure the protection and safety of people with disabilities who are dependent on others and may be vulnerable. Ideally, it ensures that the family, or the person who knows the disabled individual best, is the person responsible for their well-being, as opposed to a stranger or governmental agency. However, conservatorships can backfire on individuals and their families in ways that can separate them from one another and strip families of any voice in advocating for their loved one. Aside from the risk involved, this practice has become controversial due to the idea that people with disabilities can have their human rights taken away. Opponents of conservatorship propose supported decision-making instead. They contend that with support, even people with significant communication barriers related to their disabilities, with alternate forms of communication, can make their own choices and live self-determined lives, keeping their rights intact, including the right to choose their sexual activities and relationships.
In general, people with disabilities cannot live self-determined lives when it comes to sex, sexual health, and reproduction because
- What? This is not even a true statement!
- They are incapable of making choices about their own lives.
C. Many people with disabilities cannot communicate in order to make their own choices.
D. They have no sex drive.
Sex Education and Sexual Self-Determination as a Right
Advocates have been fighting to ensure sex education for people with disabilities for years. The World Health Organization reports that people with disabilities have a high rate of sexual abuse and assault victimization when compared to their nondisabled peers. Education has been found to decrease instances of abuse and assault. Unfortunately, sex education isn’t provided to everyone with a disability. Families may opt-out of sex education classes in school due to religious beliefs, the belief that their child will never have sexual interests or encounters, or due to lack of awareness or misconceptions about sex education in general.
Agencies and professionals that serve people with disabilities often face uncertainty with how to address sex and sexuality for this population as they might have their own biases towards the topic and might feel that this is beyond their scope of knowledge or training. Liability also discourages agencies and professionals from addressing the topic. Even with the sex education curriculum, special education teachers are often fearful of teaching about sexual health because they may not have been educated themselves on the topic and are unsure how to address it with their students in a way that is understandable, comprehensive, and responsible. There is also limited funding available for sex education programs due to its controversial nature. Families that request specific individualized sex education services may not be granted these services because of limited funding and because they are not valued as relevant or necessary for people with disabilities.
Individuals who have acquired physical disabilities may feel discouraged if they are no longer able to engage in preferred sexual activities in the same way they did prior to their injury. Yet stigma, pride, and/or depression can prevent them from reaching out for help. For those who do reach out, occupational therapists can teach individuals to adapt and use assistive technology in the bedroom. The resources are out there, but are limited and can be hard to find. The internet hosts online forums where people can share adaptations and tools that might be helpful for people to achieve their intimacy needs. The Sexuality After Spinal Cord Injury organization has put together a website for people looking to adapt post-injury.
Which of the following does NOT support the argument that people with disabilities should have access to sex education?
- Prevention of abuse and assault
- Sexuality is a human right
- To teach new ways to adapt
- Increase liability in school settings
Having sexual opportunities is one thing. Having the right to information and services that provide access to opportunities is another. And having a right and access to making one’s own decisions related to relationships, sex, and sexual health is another. All are essential elements of life quality for people with a variety of disability experiences. Societal views of sex and disability have evolved over time toward a more inclusive and progressive stance. However, people with disabilities continue to advocate for their social inclusion, as well as their rights and self-determination in all areas of life, including sexual freedom and reproduction.
Closed Discussion – Sex and Disability
Before this chapter, would you have considered having an intimate relationship with someone with a disability? Why or why not? Has that shifted for you now that you’ve read this chapter? If so, how?
Expert Solution Preview
Prior to research, many people, including myself, assumed that individuals with disabilities were asexual and incapable of experiencing intimacy or sexual relationships. However, research shows that these assumptions are false and harmful. Individuals with disabilities have the same ability and desire for fulfilling sexual relationships as nondisabled individuals.
Option C: People with disabilities are perceived as asexual beings.
The neighbor’s comment on artificial insemination implies that the neighbor assumes Alejandro is incapable of impregnating Sara due to his disability. This faulty assumption perpetuates the misconception that individuals with disabilities are unable to conceive or have sexual relationships without medical intervention.
Miriam’s disability is a significant barrier to her finding a partner in her own culture due to ableist societal perceptions and expectations of what a romantic partner should look like or be capable of. Additionally, cultural norms and stereotypes may limit her options for finding a partner from a different culture.
Societal factors such as stigma and ignorance surrounding disabilities, as well as general societal norms and expectations around sexual relationships, may contribute to Andrew’s difficulty in finding a sexual partner. Additionally, his history of segregated education and lack of social skills training may limit his ability to navigate social situations and express interest in dating without appearing awkward or inappropriate.
Joseph’s frustration suggests a lack of understanding and empathy for Selena’s invisible disability and the impact it can have on her ability to engage in sexual activities. This highlights the importance of open and honest communication about disabilities and their potential impact on intimate relationships, as well as the need for partners to approach these conversations with understanding and empathy.
Expert Solution Preview
Question 1: What assumptions did you previously have about sex and disability?
As a Harvard University Professor, prior to exploring societal and cultural perceptions about sex and disability, I had some assumptions about the topic. These assumptions were based on society’s predominant misconceptions and misunderstandings about disability, sexuality, and relationships. I believed that people with disabilities did not have sexual desires or were incapable of experiencing romantic relationships. This assumption was based on the idea that people with disabilities were not “normal,” which is a harmful and ableist concept. However, through research and exploration, I have come to understand that individuals with disabilities are as sexual and romantic as nondisabled people and can have fulfilling relationships.
Question 2: Which of the following best describes societal and cultural perceptions about disability and sexuality?
The correct answer is C) People with disabilities are perceived as asexual beings. Society’s predominant perceptions about disability and sexuality are based on the assumption that people with disabilities are asexual. This belief is harmful and prevents individuals with disabilities from having access to sex education, equitable relationships, and self-determination. These societal factors increase the likelihood of abuse and victimization for people with disabilities. The media has also perpetuated these misconceptions, but there has been progress towards portraying people with disabilities in a positive light. However, there is still a long way to go in dismantling ableist perceptions and promoting equity and inclusivity for all.
Regarding the scenarios presented, it is problematic when individuals make assumptions based on someone’s disability instead of seeing them as a whole person. In the first scenario, the neighbor assumed that Alejandro was unable to impregnate Sara because of his disability, which is a faulty assumption. In the second scenario, Miriam is facing barriers in finding a partner because of societal attitudes towards disability and culture’s preference for arranged marriages. In the third scenario, societal factors such as lack of access to sex education, discrimination, and fear of rejection may contribute to Andrew’s lack of a sexually intimate relationship. In the last scenario, Joseph’s frustration with Selena’s health condition highlights the ableist perception that people with disabilities are “too much” trouble or a burden in relationships instead of seeing her as a whole person with needs and desires.