Sexuality and disability
|This article needs attention from an expert in Sexology. (March 2009)|
Sexuality and disability refers to the sexual behaviour and practices of people with a disability (PWD). Physical disabilities such as a spinal cord injury may change the sexual functioning of a person. However, the disabled person may enjoy sex with the help of sex toys and physical aids (such as bed modifications), by finding suitable sex positions, or through the services provided by a qualified sex worker.
Relationships and disability
The experiences of people with disabilities has shown that the basic human need to form close relationships is as relevant for PWD as it is for humans without a disability. However, a long history of seclusion and segregation of people with disabilities is evident in Western culture, and this has greatly inhibited the ability of PWD to freely meet and socialize with other people. Furthermore, the social networks of people with disabilities can be small and this restricts the ability to form new relationships.
Disability stereotypes add to the difficulty and stigma experienced by people with disabilities. The following myths about people with disabilities have been identified:
- Men and women with disabilities don't need sex.
- Men and women with disabilities are not sexually attractive.
- Men and women with disabilities are "oversexed."
- Men and women with disabilities have more important needs than sex.
- Boys and girls with disabilities don't need sexuality education.
- Men and women with disabilities can't have 'real' sex.
- Sex must be spontaneous and/or have a set time.
- Men and women with disabilities, such as retardation, should not have children and should not be allowed to have children.
According to one survey, up to 50% of adults with disabilities are not in any sexual relationship at all. Online dating sites specifically aimed at people with disabilities have been founded to fill this void.
Misperceptions from the broader community has been raised as a prominent issue for PWD 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 [sexuality] 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 [son] would dearly love a relationship."
Self-image and disability
Having a disability may sometimes create an emotional or psychological burden for the person with the disability. 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 disabled, to accept their disability.
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, sensitivity to touch can increase above the lesion location in someone with paralysis from 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:
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.
Sex work and disability
In February 2013, it was reported that citizens with a disability 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 PWD. Fulton explained:
The idea is to give disabled people more of a choice. There’s still a lot of stigma attached [to disabled people having relationships] 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 disabled people having sex. But it’s not just about that. It’s about disabled people 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 disabled people 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 disabled people 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 to. 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. Dr Tuppy Owens, sex therapist and disability professional, explained in 2013 that women with disabilities "don't trust male sex workers to be honourable".
Sexual harassment, assault, and domestic violence
People with disabilities are as vulnerable as anyone to the problems that accompany sexual relationships. These problems include 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 [they] are assaulted, raped, and abused at a rate two times greater than women without disabilities [... the] risk of being physically assaulted for an adult with developmental disabilities is 4-10 times higher than for other adults".
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 PWD. 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 disabled people; and Holding On, Letting Go, a book for parents written by John Drury, Lynnne 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 Dr Owens after the Outsiders/Royal Society of Medicine conference "Disability: Sex Relationships and Pleasure", held in 2009. Cowan, a consultant with multiple sclerosis (MS) 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 disabled people.
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 disabled people 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 exists and 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.
The subject of the Scarlet Road documentary, Rachel Wotton, also cofounded and helps run Touching Base, an organization based in New South Wales, Australia that provides information, education and support for disabled clients, sex workers and Disability Service Providers. The organisation has been active since October 2000 following the formation of the founding committee that consisted of disability and health organisation 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 organisation was receiving around one weekly phone call, but by 2012, enquiries were daily.
In March 2014, former Australian High Court judge Michael Kirby became a patron of the organisation, 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".
- TLC Trust
The TLC Trust provides a web-based service that facilitates the provision of sexual services—sex workers, therapists, and teachers—for PWD, including a phone call appointment-booking service for those people with speech impairments or care workers who are unable to organise such services for clients due the policy of their employer. The TLC Trust was founded in 2000 at a Sexual Freedom Coalition Conference and the website was initially run by James Palmer, a man with a disability. The organisation has garnered praise from sex educator and performance artist Annie Sprinkle, and academic and writer A.C. Grayling.
Founded by Dr Owens, Outsiders is primarily an international social club for PWD, but the organisation also runs the Sex and Disability Helpline, a telephone support service for PWD that is staffed by both people with disabilities and health professionals. Outsiders is supported by the Outsiders Trust, which consists of a Board of Trustees that assists with the management of matters such as finances and projects.
- Sexual Health and Disability Alliance (SHADA)
The Sexual Health and Disability Alliance, also founded by Owens, was first started to provided a forum in which all of the UK's disability helpline operators, and others, could meet and discuss their work. The individuals who were initially involved state that they were "eager to improve the sex-positive work we do" and the Alliance was eventually formalised in 2008 with a mission to "bring together health professionals who work with disabled people to empower and support them in their sex and relationship needs." The Alliance does not charge a fee for those interested in becoming members and meets biannually in London. It held its first conference in 2009 at the Royal Society of Medicine.
- The Disabilities Trust
The Disabilities Trust is over 30 years old and is a leading charitable organisation in the UK. It states that it provides "residential and day services to meet the needs of individuals with Autism, Brain Injury, Physical Disability and Learning Disability", as well as helping people to live at home in the community. The Trust has produced written information on sexuality and disability, which are freely available on the Internet.
- CREA educational website about Sex and Disability
- Disabled World: Disability Sexuality – Information on Sex and Sexual Issues with Disabilities
- Sexuality and Disability online journal
- Scarlet Road official website
- "Sex and disability: Sex after spinal cord injury". Retrieved 2009-02-20.
- Sarah Whyte (11 November 2012). "A touch of kindness". Sydney Morning Herald. Retrieved 7 March 2014.
- "Mythbusting: Sexuality and Disability". CREA. Retrieved August 18, 2012.
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- Karen Barrow (27 December 2010). "Difference Is the Norm on These Dating Sites". New York Times. Retrieved 2 March 2014.
- Kaufman, Miriam (2010) . The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness. Readhowyouwant.com. p. 32. ISBN 9781458767912.
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- Cooper, Elaine, and John Guillebaud (1999). Sexuality and Disability: A Guide for Everyday Practice. Radcliffe Publishing. p. 16. ISBN 9781857753196.
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- Fitzgibbon, Rebecca (August 15, 2012). "Opinion: Offering a touch of dignity". The Mercury, Tasmania, Australia. Retrieved August 18, 2012.
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