Sexuality and disability
Sexuality and disability is regarding the sexual behavior and practices of individuals with disabilities. Individuals with disabilities have a range of sexual desires and differ in the ways they choose to express their sexuality. Commonly, people with disabilities lack comprehensive sex education that would assist in their sexual lives. This roots from the idea that people with disabilities are asexual in nature and are not sexually active. Although some people with disabilities are asexual, it is a misconception to label all as such. Many people with disabilities lack rights and privileges that would enable them to have intimacy and relationships. When it comes to sexuality and disability there is a sexual discourse that surrounds it. The intersection of sexuality and disability is often associated with victimization, abuse, and purity.
For physical disabilities that change a person's sexual functioning, such as spinal cord injury there are methods, that assist where needed. An individual with disabilities may enjoy sex with the help of sex toys and physical aids, by finding suitable sex positions, or through the services provided by a qualified sex worker.
History
Much of the sexual biases in the United States are traced back to Puritan ethics. Issues on the acceptance of sexuality and disability root back to 2000 years. The review of history on sexuality in philosophy, religion, and science leads to the modern day views on sexuality and disability. Religious institutions were the first entities to combat sexuality. They believed that sex was a sin and should not be practiced unless it was done with intents of reproducing. Then doctors began developing medical views on sex. Sexual pleasure was deemed a sickness. The taboo around sexuality being a disease and sin restricted many people from expressing their sexuality, especially people with disabilities.After much groundbreaking research, it was not until the 20th century that sex and pleasure became normalized. With the normalization of sex, pleasure became the main focus. Healthy sex meant a good performance that led into an orgasm. If a person was not able to orgasm during sex they were seen as inadequate for sexual intercourse. With this a sex therapist would help the individual explore oral sex, and clitoral orgasm. When a person with a disability is not able to achieve an orgasm it was not seen as problematic, because they did not have sexual desires. The neglect on the sexual lives of people with disabilities roots from the idea that they are child like and asexual. Because people with disabilities do not fall under the category of being sexual, there were no resources for them to seek sexual assistance.
Over the years sexually disenfranchised groups were working towards sexual acceptance for all people, including queer and disabled communities. The work of these groups began to open doors for people with disabilities to become more expressive of their sexuality. Even with these new found opportunities, sexual pleasure for people with disabilities remained unspoken of.
Self-image
Having a disability may sometimes create an emotional or psychological burden for the individual with disabilities. They may feel inhibition about pursuing relationships, fearing rejection on the basis that they have a disability. Self-image may suffer as a result of disfigurement, or lack of confidence. A New York disabled dating service manager explains, "Sexuality, travel, mobility, pain: Everything takes on a different dimension." In The Ultimate Guide to Sex and Disability, Miriam Kaufman points out that attempting to hide a disability or minimize its existence is ultimately an added burden, encouraging readers to "come out" to themselves as having a disability, to accept their disability.There is often fear associated with the intersection of sexuality and disability. Many people with disabilities embody a fear of being rejected due to the way they look. This hypersensitivity causes the individual with disabilities to keep interactions platonic. Author of Sex and Disability Robert McRuer studied a man with disabilities. McRuer gave insight on the individuals sexual and non-sexual encounters. This man had a belief that crossing the line into sexual encounters meant it would cause severe bodily harm for him. During a sexual encounter, the man felt very uncomfortable and could not cross the sexual boundary. This was due to his fear of being judged. This is an issue common in some people with disabilities. The "evaluative gaze" coming from others causes people with disabilities to feel judged and uncomfortable in their own bodies.
It is a common misconception that people with disabilities are insecure and have a negative self-image. A study was done on 7 adolescents with cerebral palsy, to assess their self-image. Of the group there were 3 girls and 4 boys, ranging between 12 and 17 years old. A personality inventory was conducted and the results came out to be positive. The group of adolescents with disabilities viewed themselves very positively, rating their self-image higher than norm groups. After the inventory, the interviewer Lena Adamson came up with this conclusion in her brief report- Self-image, Adolescence and Disability. American Journal of Occupational Therapy.
"The following conclusions are made: Further studies on self-image and the psychosocial development of adolescents with disabilities should focus on the social interaction outside their immediate families, and continue to use and develop methods where these adolescents can give voice to their own experiences and opinions."
In contemporary society
Individuals with disabilities are rarely regarded in society as sexy or believed to be sexually active. When sex and disability are linked, it is common for marginalization to occur. Many people shy away from the idea that individuals with disabilities can have sex. This is due to a lack of information on the subject. Popular scholarly texts on disability rarely discuss sex, conversely disability is rarely discussed in the field of sexuality studies. Disability studies is a new field, it is just recently beginning to have a voice in the scholarly communities. Cultural theory on HIV and AIDS is one area of study that has broadly considered disability and sex. Since the AIDS epidemic the queer community have been including physical and intellectually Individuals with disabilities in their activist interventions. But even with these efforts, the correlation between sexuality and disability are not discussed in disability studies.In society it is widely believed that women with disabilities are asexual. One reason for this belief is that Individuals with disabilities are seen as eternal children. Others see the intertwine of sex and disability as an acrobatic act. It is difficult for many people to imagine an Individual with disabilities having sex, because of the restricting impairments. Viewing women with disabilities as asexual has its issues. In contemporary United States women with disabilities are not viewed as physically attractive because society does not view them as sexually desirable. This results in women with disabilities to be limited and constrained to love and be loved.
In the United States pleasure and sex have been largely ignored, especially when it comes to Individuals with disabilities. Medical facilities, public schools, and religious groups have created a "don't ask don't tell policy" when it comes to sex education. The United States government has spent over 500 million dollars funding a program that restricts public schools from teaching sex in the classroom. The idea is that people should remain abstinent until marriage. This dominant idea has silenced many public institutions.
In society sex is portrayed appropriate only for single, young, heterosexual and able bodied people. Because of this spaces to express sexuality are minimized for Individuals with disabilities. Individuals with disabilities are marginalized so the intersection of sexuality and disability is not recognized. When an individual is sexually active, they tend to exclude people with disabilities from their sexual space. These attitudes have served to shun out personal and public sexual pleasure for Individuals with disabilities.
In mainstream media people who are disabled are absent when it comes to sexual portrayals. This is also true when it comes to medical and scientific literature. The biological idea that sex is meant for reproduction has been damaging to the sexual lives of Individuals with disabilities. Because some disabilities restrict an individual from having children, the idea of this person having sex is eliminated. After this the individual with disabilities is no longer a candidate for reproduction. This social cultural viewpoint creates the need in society to protect Individuals with disabilities from harm, by keeping them away from all sexual encounters.
Sexual activity
General
The mechanics of sex may be daunting, and communication, experimentation, medication and manual devices have been cited as important factors for sexual activity where disability is involved. Additionally, recognition of the pleasure that is derived from sexual activity beyond penetration and intercourse is also highlighted. For example, changes may take place in a person's sexuality after spinal cord injury; sensitivity to touch can increase above the lesion location in someone with a spinal injury. From research undertaken by the Christopher and Dana Reeve Foundation, orgasm was achievable for 79% of men with incomplete spinal cord injuries and 28% of men with complete injuries.Oral sex is another alternative where penetration is not possible or not wanted, and wedge devices can be used to aid with positioning—wedges can be used as an aid in sex generally. Sex toys may be used as assistive devices as well; for example, vibrators can be used to provide extra stimulation and in circumstances where hand mobility is impaired. Other supportive devices include manual stimulation pumps, for erection promotion and maintenance, and "sex furniture", whereby rail or clamp enhancements, or specialised designs facilitate sexual activity.
Writer Faiza Siddiqui sustained a serious brain injury that led to a decrease in her sexual drive and the loss of her ability to orgasm, with the latter most likely the result of damage to Siddiqui's hypothalamus. Siddiqui explained her learning process in relation to sexual activity following the accident in a 2013 article:
Some people with a spinal cord injury are able to "transfer their orgasm" using sexual energy to any part of the body that has sensation. For example, Rafe Biggs acquired a spinal cord injury in 2004. Through his work with a sexologist he discovered during a massage that when his thumb was being massaged; it felt very similar to his penis. It was through this experience that he learned that he could transfer his orgasm, using tantric energy, to his penis. Kenneth Ray Stubbs also has a spinal cord injury and is able to use tantric bodywork to obtain an "orgasmic feeling". If a person is able to use sexual energy correctly then they would be able to experience an orgasm in any part of the body that is capable of feeling sensation.
I had to clear away all the thoughts I had about my imperfect body... Since then, I’ve started to feel less shame about my unresponsive body... My brain can’t concentrate on as many things anymore, so I have to focus more on every little twinge and the lightest of touches. Surely that’s going to mean better sex? I can’t say that the sex is exactly better – I can't be on top anymore – but I'm learning that it doesn’t really matter... I had to grow up. Growing up is something that we’re all having to do.
Fetishes and BDSM
Sexuality for people with disabilities is often linked to fetishes and "freakish excess."- Abasiophilia is when an individuals sexual arousal is dependent on a sexual partner with a disability. The obsession is most common for people with disabilities who wear leg braces.
- Apotemnophilia is self demanded amputation.
Some individuals who have this fetish, have made successful amputation attempts. For those who want to be amputated but do not have the means or strength to do so, are able to get professional assistance.
- Devotism is the sexual attraction someone has for a person with disabilities
People who have a devotism fetish are referred to as Devotees. Robert McRuer argues that devoteeism relies on disgust and desire. The description of the devotees desire come from an ableist assumption that disabled bodies are disgusting. It is typical for a devotees to view themselves as the only people who are sexually attracted to amputees. That they are the only ones capable of desiring a person with disabilities. This belief establishes a ground for Devotees exceptionalism.
BDSM is a topic in the sex and disability culture. It has been described as empowering for people with disabilities because of their acceptance of non-normative bodies. BDSM could be used as a way to control pain for people with chronic pain. Bob Flanagan used BDSM to help him cope with his Cystic Fibrosis. His ability to control his own pain excited him as he was known to push himself as far as he could. "I was making a mockery out of something serious that had happened to me," said Flanagan when making light of his pain related to Cystic Fibrosis. Flanagan was an artist. He was a writer, an actor, and also created a traveling museum exhibit called "Visiting Hours" that showed the intersectionality of Cystic Fibrosis and sadism and masochism. In the exhibit, "Visiting Hours", museumgoers would experience an environment that was a combination of a children's residential hospital and a BDSM torture chamber. The purpose of this exhibit was to portray Flanagan's pain through a pleasurable lens showing that BDSM could offer some sexual healing.
Women and girls with disabilities are a common focus in fetishism due to their immobility. This makes them especially vulnerable to sexual abuse.
Sex work
In February 2013, it was reported that citizens with disabilities in the Netherlands were eligible for a government-funded scheme that provided funds to cover up to 12 occasions of sexual service per year. During the same period, Chris Fulton, a campaigner in the UK with cerebral palsy and muscular dystrophy, called upon the UK government to also provide financial support for sexual services for people with disabilities. Fulton explained:
The idea is to give people with disabilities more of a choice. There's still a lot of stigma attached from research I’ve done and experiences I've had. I think it would be good to bring the Dutch scheme over here to take away that stigma about people with disabilities having sex. But it’s not just about that. It's about people with disabilities being accepted when they have relationships... It needs to be brought out into the open in a managed and constructive way.
In early 2013, former brothel owner Becky Adams spoke with the media about her intention to open a non-profit brothel exclusively for people with disabilities in the UK, which, if launched in 2014, will be the nation's first legal initiative of this nature. Adams stated that she will invest £60,000 into the brothel after suffering a stroke in 2009—Adams explained that after the stroke, her "eyes were suddenly opened. I was utterly unaware that such a big group was suffering so enormously." If she is approved for a permit, Adams plans to open a two-room service in Milton Keynes, near London, that will be staffed by sex workers and assistants.
Adams also founded the Para-Doxies service in 2012, which connects people with disabilities throughout the UK with sex workers—at the time, Adams ran the service on a completely voluntary, non-profit basis. In April 2013, the service was receiving over 500 enquiries a week from men, women and couples, and was struggling to cope with the demand.
A 2011 Australian documentary directed by Catherine Scott, Scarlet Road, explores another aspect of sexuality and disabilities through the life of a sex worker who has specialized for 18 years in a clientele who have disabilities. In 2012, the topic was highlighted in a fictional film based on the real life experience of writer Mark O'Brien. The Sessions portrays the relationship between O'Brien, who survived polio as a child, and a "sexual surrogate" to whom he loses his virginity. A member of the British Polio Fellowship states that post-polio syndrome, which affects polio survivors later in life, is a little-known condition that could have been explored in the film.
A survey conducted by the Disability Now magazine in 2005 found that 19% of female participants would see trained sex workers, compared with 63% of the male respondents. Tuppy Owens, sex therapist and disability professional, explained in 2013 that disabled women "don't trust male sex workers to be honourable".
LGBT
people with disabilities face double marginalization. Individuals with disabilities are often either viewed as nonsexual or hypersexual. Because of these misconceptions it is hard to find queer people with disabilities portrayed in healthy sexual lives. During the recent decades, scholars have been working to include disabilities studies into queer theory, with the intentions of normalizing disability in queer and LGBT spaces. Queer and disabled liberation starts with the rejection of historic ideas on sexuality and disability.It is also rare to have a queer person with disabilities portrayed in media. Some movies and literature do exist for the queer disabled communities such as:
- Akers, Michael D.. 2012. Morgan. United Gay Network
- Alland, Sandra. 2013-2014. I’m Not Your Inspiration
- Bose, Shonali. 2014. Margarita, With a Straw.
Relationships
Individuals with disabilities access to sexual and emotional partners is restricted by societies de-eroticization of their sexuality. The experiences of individuals with disabilities has shown that the basic human need to form close relationships is as relevant for individuals with disabilities as it is for humans without a disability. Furthermore, the social networks of people with disabilities can be small and this restricts the ability to form new relationships. Society's view of disability also puts pressure of individuals with disabilities in finding relationships. Even though our society has made great strides with creating a more accepting world, individuals with disabilities are still seen as outsiders. Parents prevent their children from asking individuals with disabilities questions which results in them viewing people with disabilities as "other". While the majority of able-bodied people meet other people in public spaces there are many physical and social barriers. The lack of access to public spaces, whether it be stairs; an absence of menus written in braille; or no ASL interpreters; could make it difficult and almost impossible for an individual with disabilities to go out. Individuals with disabilities also participate in online dating. Not only are there websites that are for online dating, but there are also websites that are solely for people with disabilities finding someone that is also disabled or someone that wants to date an individual with disabilities.Disability stereotypes add to the difficulty and stigma experienced by individuals with disabilities. The following myths about individuals with disabilities have been identified:
- Individuals with disabilities don't need sex to be happy.
- Individuals with disabilities are not sexually attractive.
- Individuals with disabilities are "oversexed".
- Individuals with disabilities have more important needs than sex.
- Individuals with disabilities don't need sex education.
- Individuals with disabilities can't have real sex.
- Individuals with disabilities, particularly those with intellectual disabilities, should not have children and should not be allowed to have children.
Misperceptions from the broader community has been raised as a prominent issue for individuals with disabilities in terms of their own relationships. The head of a disabled dating service explained in 2010: "Like anyone else, people with disabilities have different preferences. Someone with good mobility may prefer someone also mobile; others don’t limit at all." In a 2012 Sydney Morning Herald, the mother of a man with cerebral palsy explained, "It's hard being a parent and this comes up. People see them sitting in their wheelchair think, that's it. They don't see what's going on in their lives and Mark would dearly love a relationship."
Oppression
There is a long history of seclusion and segregation that has affected society's view of people with disabilities. For years people with disabilities have been segregated from society. People with disabilities were often put in institutions against their will because they were deemed "weak" and "feeble minded." While they were in the institutions they would often experience compulsory sterilization a.k.a. forced sterilization. The types of sterilization would include vasectomies, salpingectomy, and other types as well. None of these were considered dangerous to the person in the institution. In 1927, the United States Supreme Court case of Buck v. Bell stated that it was permissible to sterilize some people with disabilities against their will. It also stated in the decision that that did not violate the Fourteenth Amendment to the United States Constitution. However, in Olmstead v. L.C., 527 U.S. 581, the Supreme Court of the United States held that under the Americans with Disabilities Act, individuals with mental disabilities have the right to live in the community rather than in institutions if, in the words of the opinion of the Court, "the State's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities."According to a series of interviews taken place in Malta investigating the sexual lives of men and women with intellectual disabilities, most individuals reported that they felt oppressed by the expectations from families and caretakers to not engage in sexual activity or a relationship. As a result of the study, almost all individuals expressed a desire to be able to talk openly about their relationships and spend more time away from the family. And while all people's sexualities are controlled and limited by social norms, people with disabilities feel that they are limited by further factors. Another study in Texas explored the beliefs of the families and caretakers of people with intellectual disabilities on their sexualities. The results proved that the majority of families and caretakers of those with intellectual disabilities believed that those with disabilities should not engage in sexual activity because of the fear that they will be taken advantage of. A resolution to the oppression that people with disabilities face when it comes to sexuality is educating families on these researches and educating the disabled on their own sexualities and life options.
Sexual harassment, assault, and domestic violence
People with disabilities are no less vulnerable than people without disabilities to harassment, assault, and domestic violence. People with disabilities are more vulnerable to sexual assault than the general public, being targeted due to the physical or mental impairments that they have. The American Journal of Preventive Medicine has published results of a survey that found that males with disabilities are 4 times more likely to be sexually abused. Other studies have shown that for women with disabilities, "regardless of age, race, ethnicity, sexual orientation, or class are assaulted, raped, and abused at a rate two times greater than women without disabilities risk of being physically assaulted for an adult with developmental disabilities is 4-10 times higher than for other adults".It is estimated that 25% of both girls and boys with disabilities will experience sexual abuse before the age of 18. It is also estimated that 20% of these incidents are reported. These rates are much higher than sexual abuse incidents pertaining to nondisabled children. There is a 1 in 4 chance that a girl with developmental disabilities will be molested before the age of 18. This is 10 times higher than the nondisabled population. During the California Committee on Abuse of Person with Disabilities, national statistics estimate the sexual abuse on people with disabilities as such:
"By combining national statistics with specific studies, estimate ranges are as follows: between 39% and 83% of girls with developmental disabilities, and between 16% and 32% of boys with developmental disabilities will be subjected to sexual abuse before the age of 18 years. Incidence of sexual abuse among the population of persons with developmental disabilities was estimated in 1985 by the California State Department of Developmental Services to be 70% "
A majority of the predators are documented to be the father or stepfather of the victim. This is especially true for females with developmental disabilities. It is estimated that 10% of girls with intellectual disabilities are victims of incest. Females are most likely to be victims of sexual abuse. Studies show 50% of disabled females have experience multiple incidents of sexual abuse and 80% of disabled males experienced 1 incident. The numbers for sexual abuse are so high because the perpetrators are well known to the individual, such as a parent, uncle, aunt, cousin, friend, caretaker or sibling.
The statistics on sexual abuse for people with disabilities with disabilities are also high because staff and dependent parents are not adequately trained on identifying sexual abuse. Many staff believe that sexual abuse must be proven before it is reported. The issue with this is that certain disabilities restrict the individual from expressing the experience. Dependent Adults with training on identifying abuse are more effective in protecting the child. Most programs focus on "stranger danger", which is not effective because most sexual abuse assaults come from the individual's inner circle.
With more and more cases of sexual abuse reported towards people with disabilities, organizations and state government have taken action. Training seminars are available online and in person for sexual abuse prevention for people with disabilities. Various groups also provide these training seminars such as The Child Abuse Councils, Disability Conferences, and Sexuality Organizations. Government social service agencies also provide assistance for sexually abused people with disabilities.
Prevention
Several prevention programs against sexual abuse for people with disabilities exist in the United States.- Seattle
- Minnesota
- California
Resources
People may have concerns about sexual participation after experiencing a disability which can affect that person's quality of life and self-esteem. If you are looking for a professional to talk to about your unique needs you can reach out to social workers, psychologists, sex therapists, and occupational therapists as well as others. Specifically, occupational therapists can help people navigate intimacy and sexual expression with sensitivity and empathy. OTs are health care providers, who are knowledgeable about sex and sexuality and can work with people to fully experience and enjoy sexual participation.Sex guides depicting various sexual positions, as well as other written material, can be helpful for couples who need to address mobility impairments, as well as for those who are caring for or working with people with disabilities. Such resources, written by people with expertise in disability issues, are in print, including: "Sexuality and Learning Disability", by Claire Fanstone and Zarine Katrak; The Ultimate Guide to Sex and Disability, published by Cleis Press, which consists of advice from people with disabilities; and Holding On, Letting Go, a book for parents written by John Drury, Lynne Hutchinson and Jon Wright.
The creation of the "Sexual Respect Tool Kit" was initiated by Alex Cowan, a professional working in the disability field in the UK, and Owens after the Outsiders/Royal Society of Medicine conference "Disability: Sex Relationships and Pleasure", held in 2009. Cowan, a consultant with multiple sclerosis who discovered the lack of sex-related support for PWD through personal experience, worked with Owens to form a group of experts, consisting of people such as human rights law lecturer Claire de Than and sex educator Sue Newsome, to further develop the tool kit concept. The finished resource is designed to assist health professionals in the UK to initiate discussions on sex and related matters with people with disabilities.
Disability Horizons is a UK magazine co-founded by Srin Madipalli and Martyn Sibley, who both have spinal muscular atrophy and continue as co-editors. The publication is self-described as a "21st Century View of Disability" and seeks to "help people with disabilities achieve whatever they wish." Disability Now is another UK magazine that is published by Scope, a national cerebral palsy organisation. The publication appointed its first disabled editor in September 2007 and had a circulation of 20,000 at the time.
An academic journal founded in 1978, called Sexuality and Disability, is described by its publisher, Springer Publishing, as "A Journal Devoted to the Psychological and Medical Aspects of Sexuality in Rehabilitation and Community Settings". Its current Editor-in-Chief is Sigmund Hough.
PleasureABLE is a sexual device manual, made for people with disabilities. The manual was created to assist any race, gender, age, and sexual orientation with their sexual life. The authors of PleasureABLE believe that sexuality should be embraced, pleasurable, and talked about. PleasureABLE's manual discusses anatomy, routines, safety, devices for physical disabilities, positioning, and safe sex. These topics are geared towards people with disabilities and health care professionals.
Organizations
Australia
The subject of the Scarlet Road documentary, Rachel Wotton, also co-founded and helps run Touching Base, an organization based in New South Wales, Australia that provides information, education and support for clients with disabilities, sex workers and Disability Service Providers. The organization has been active since October 2000 following the formation of the founding committee that consisted of disability and health organization representatives. Wotton explains, "I am a sex worker and I make my money from clients seeing me. Some clients just happen to have a disability." Initially, the organization was receiving around one weekly phone call, but by 2012, inquiries were daily.In March 2014, former Australian High Court judge Michael Kirby became a patron of the organization, joining four other inaugural patrons: Eva Cox, Professor Basil Donovan, Associate Professor Helen Meekosha, and NSW Local Government elder statesman Peter Woods. Following his appointment, Kirby stated: "If you deny sexual expression to human beings, cut them off from that aspect of their personalities and of their happiness, then you end up with a lot of very frustrated and very unhappy people", and he praised Touching Base for recognising that people with disabilities need "to have opportunities for sexual expression".
People with Disability Australia has developed a sex and relationship education workshop for people with intellectual disabilities.
United Kingdom
- TLC Trust
- Outsiders
- Sexual Health and Disability Alliance
- The Disabilities Trust
United States
- Reach Out USA
- Queerability