By Nanette Ashby
„To realize our sexual freedom, our goal must be to infuse the dominant sexual culture with the richness of our own experience. We must celebrate our differences from those without disabilities. We must see that our differences in appearance and function which are the sources of our degradation also contain the seeds of our sexual liberation” – Barbara Faye Waxman (Kaufman 1).
During my training to become a relationship and sex educator, I noticed that a lot of positive changes were being made in regard to inclusivity and accessibility to sex education for LGBTQ+ youth and youth from different ethnic backgrounds. However, one minority was still being overlooked: People living with disabilities or chronic illnesses.
This minority group is much bigger than many people would expect. The WHO states that it is estimated that more than 1 billion people worldwide are currently living with some form of disability (WHO). And this number is steadily growing due to conditions such as Chronic Fatigue Syndrome (ME), Fybromyalgia and now due to the pandemic Long Covid. This should make it very clear that disability does not discriminate, and anyone could become disabled at any point in their life. Does that mean if you become part of this group, you will automatically lose your desire to have sex, to be in a healthy relationship or to start a family? No, not at all! So why does the pre-dominant discourse and its effects on people’s behaviour reflect these ideas?
There are many myths in our culture about sexuality in combination with disability which hugely and directly impact people living with a disability, but also the rest of society. “Wrong ideas of sex and disability affect us all. Many of these ideas have been communicated in such a subtle way that we aren’t even aware that we believe them. When we do believe them, we limit our possibilities as sexual beings and damage our self-esteem” (Kaufman 1). This could manifest itself when looking for a partner for example. If you were taught that disabled people aren’t a desirable or worthy partner, you can miss out on many amazing connections with people who just so happen to also have a disability.
One area in which the influence of these ideas and myths about sexuality become very noticeable is in relationship and sex education, or RSE for short, in a school environment. When adding disability to the mix, it becomes even more visible how important sex education is. Not providing inclusive RSE can cause detrimental and dangerous consequences for young people regardless of ability. Some of these consequences will be discussed in this article.
“We rarely find media depictions of people living with disabilities and chronic illnesses as having sex lives. And if we do, it is usually presented as a rare and incredible thing” (Kaufman 2). This is due to the myth that disabled people aren’t sexual beings. This can be traced back to the ignorance non-disabled people have towards the fact that they could become disabled themselves at any point. To not deal with this reality, it is best to have the reality of disability out of sight, out of mind. Secondly, there is a preconception that the lives of disabled people are drastically different to their own. Since some disabled people use a mobility aid, they suddenly can’t have orgasms anymore apparently. “You may have sixty years’ life experience, with the body, brain, temperament, and libido of an adult, but if you can’t feed yourself, or need help wiping your ass, or getting in and out of a car, you are considered a child. Thus they deny our sexualities” (Kaufman 3). Ability is often seen as synonymous with being able to take care of yourself without help and not as the “ability to work creatively and cooperatively with others” (Kaufman 3). Because you cannot take care of yourself without regular support from other people, you are put on the same development level as a child.Infantilization of disabled peopleis a big problem due to it creating the foundation of the idea that disabled people do not need to learn about sex and sexuality. It not only prevents them from getting access to RSE in schools or at home, but it also strips them of their sexual and reproductive health rights, including making decisions on contraception and family planning or getting tested for STIs on a regular basis. It is in the same line of thinking as, “why would you tell a child about blowjobs, STIs or gay sex? It likely won’t be a part of their life in the near future anyway”.
Emily Yates states as part of the roundtable discussion Disability, Sex, Relationships and Dating hosted by Hannah Witton: “My sex education at school was pretty horrendous as I can almost guarantee most of ours might have been. Before I lost my virginity, obviously the sex education I had had, none of the bodies in any of the videos related to what my body looks like and can and can’t do” (Witton 3:07). The lack of representation of disabled bodies is telling. This statement also touches on the general lack of proficient and inclusive sex education lessons and available resources for nondisabled youth. The lack of visual representation of disabled bodies could also be due to the myth that people living with disabilities and chronic illnesses are not desirable. How does this manifest in real life? For example, the Charity Scope claims that “only 5% of non-disabled people have ever been asked out or been on a date with a disabled person” (Puma). Due to lacking inclusive RSE, the discourse can also take shape through harmful messages like “no one wants you if you cannot do all the positions in the kama sutra”, or all women “have multiple orgasms in a row and look like pornstars whilst doing so”. Regardless of ability, would you be able to check all the boxes? Taking extra time to communicate your needs with a partner, using sex toys or other aids or exploring different types of sex than penetration could apparently make you a burden to your partner. Even though these things should be part of every healthy relationship be it with disabled or non-disabled sexual partners. Unrealistic expectations are damaging for everyone regardless of ability.
Nima adds: “At my school, it was a mainstream school with a unit attached, where when you had an impairment you can go and get your treatment, your physio, … the majority of the kids when we were going through sex education were removed from the sessions. But I was like, I want to stay because I felt like I couldn’t necessarily relate to the images that I saw but I related to the fact that I did want a relationship and I did want to have sex at some point and I wanted to have those experiences in life but I think they just assumed that the other guys didn’t” (Witton 7:10). It is a common theme that non-disabled people make decisions for disabled people without enquiring what the person wants for themselves. Assumptions are made based on the pre-dominant discourse which is mainly maintained by non-disabled people in the first place and based on prejudices, some of which were already mentioned. “Sexual ignorance is an enormous obstacle for all of us when trying to figure ourselves out sexually. Our situation is made even worse when we are systematically denied access to the little bit of sex education most people get” (Kaufman 17). For both disabled and non-disabled people knowledge is power.
New legislation from the Department of Education in the UK did come into effect recently. In 2020, the new statutory guidance on relationships education, relationships and sex education (RSE) and health education made it mandatory for nondisabled students to take part in relationship education classes during primary school. However, for secondary schools, this rule does not apply. Until then, parents still had the right to pull their children out of class in primary school and keep them from accessing vital information, for example about periods and consent. From the age of 15, young people have the right to choose to join RSE classes again themselves, regardless of their parents wishes, but between the ages of 10-15 it is up to their parents. It is unclear whether or not the new rules also apply to disabled youth. The content of the statutory guidance does mention disabled youth, but only in a context of protecting and safeguarding them and not in a context of pleasure and expression of their sexuality (Doing It! With Hannah Witton). The topics included in the guidance have been updated slightly to include topics such as online pornography or sexting, but it still hasn’t caught up with the times. It is also worth mentioning that the new statutory guidance still has many loopholes in regard to what is actually taught, how often and in what context. For example, although everyone is obliged to teach about contraception methods, Catholic private schools might only teach abstinence as a contraception method, omitting other possibilities such as condoms and hormonal birth control. This would technically fulfil the guidance requirements, but is practically grossly insufficient when teaching young people about safe sex. Obviously, there are many issues still to fix, however, the guidance can be seen as a long awaited step in the right direction. The RSE guidance had to be implemented by Summer 2021.
As the world health organisation explains: “sexual rights embrace human rights that are already recognized in national laws, international human rights documents and other consensus statements” (WHO). They state that everyone, regardless of their physical capabilities, free of discrimination, coercion and violence has the right to the highest attainable standard of sexual health, including access to sexual and reproductive health care services, to sexuality education, to pursue a satisfying, safe and pleasurable sexual life, to consensual sexual relations and more. No matter your phyisical abilities, you deserve love, intimacy, access to sexual health care and a healthy sex life. Sexual expression is a human right.
Hannah Witton states: “It always surprises me that there isn’t enough education about disability and sex as well because even. like say you are looking at your class that you got to teach you could be like, but none of my students are disabled, but they might end up in a relationship with somebody who is” (Witton 10:10). Other possibilities include having invisible disabilities or acquiring a disability later in life. One could say the previous statements from the Roundtable only reflect the situation in the UK more than ten years ago when the speakers were receiving their RSE. Sadly, the situation has not drastically evolved. In July 2021, the HEPI report no.139 Student Relationships, Sex and Sexual Health Survey written by Michael Natzler and David Evans with support of the charity organisation BROOK, was published as a survey of 1,004 undergraduate students in the UK. Based on their data, 84% of disabled students reported that the RSE they received was not fully relevant to their disability or that disabled students did not receive adequate RSE. „When we asked students to respond to the statement ‘The education I received at school prepared me for sex and relationships at university’, a higher proportion of disabled students disagree (62%) than students without disabilities (44%)“ (Evans 16). What is also alarming is that “a higher proportion of disabled students report a negative experience of receiving guidance to access sexual health services at higher education institutions than students without disabilities“ (Evans 16). This indicated that the discourse containing myths such as “disabled people not being sexual or desirable” is also present in Universities, a place that prides itself on being a place of knowledge and education.
Another serious consequence of lacking RSE, according to National Crime Victimisation Survey (NCVS), is that disabled persons are at a significantly higher risk of being victimised. One of the most vital parts of sexual activity with any partner is consent. Depending on the disability, consent is even more important but at the same time more complicated to communicate, which can be easily exploited by perpetrators. As mentioned before, disabled people rarely have access to proper relationship and sex education and aren’t taught what consent is, what sex is or even what parts of their genitalia are called. This means that they might not have the vocabulary to properly explain what happened to them which can make them less believable when reporting sexual abuse. If one neither teaches people what healthy sexual and or relationship looks and feels like, nor the types of touching that are appropriate or inappropriate, how are they supposed to know the difference? “This can be especially challenging if a person’s disability requires other people to touch them to provide care” (RAINN). Not providing access for disabled people to basic RSE makes them unnecessarily vulnerable. Additionally, people with intellectual and/or developmental disabilities might not be able to give consent in the first place in the eyes of the law. A common situation is that the disabled people are dependent on the perpetrator, be it for access e.g. helping you into your wheelchair in the morning or being able to sign and thus being your line of communication with the outside world or for basic care e.g. giving you food and wiping your ass. This is a common occurrence in elder abuse. The perpetrator uses their power to force, threaten or coerce someone into non-consensual sexual activities. Lines of communication can easily be taken away by the perpetrator such as phones or computers. Another big factor is the reality that people with disabilities are less likely to be taken seriously when they make a report of sexual assault or abuse. If you use words like “naughty bits” instead of penis and vagina because that was all you were told, it can have an effect on your credibility. This also brings back a myth addressed above:“disabled people aren’t desirable”. Possible responses to disabled people reporting abuse are, “the victim should be grateful to even get to have sex or have someone who likes them since who would want to have sex with someone like them?” This is likely one of the reasons why sexual assault and abuse of people with disabilities often goes unreported. Another factor is not being able to access the right services to make a report to begin with if the perpetrator controls your communication, transport and sometimes your own body.
What have we learned? Sex education is a human right. It is a prerequisite for having healthy relationships and general wellbeing. “Knowledge about safer sex and sexual health remains important to ensure that young people are equipped to make safe, informed and healthy choices as they progress through adult life” (GOV UK). It can provide people with the tools to better protect themselves from grooming or sexual assult, regardless of disability. Because disabled people are not seen as sexual beings or desirable, they do not have the same access to the RSE other young people have. This article only scratched the surface of this issue. It is vital to highlight the current state of the discourse around disability and sexuality and understand what misconceptions and myths are shaping it. That way we, as a society, can positively influence the discussion and support people living with chronic illnesses or disabilities properly going forward. The pre-dominant discourse is highly influenced by non-disabled people and does not leave room for voices from the minority group who are personally affected. It is everyone’s job to change this.
„Many people living with disabilities regularly highlight ways in which their sexual health and wellbeing needs are routinely missed and / or disregarded within services and societies, including schools and universities” (Evans 17). It is everyone’s responsibility, regardless of our field of work to listen and take all concerns seriously. What can you adapt in your field to make it more accessible for disabled people? Another important step is to check and analyse your own biases. What preconceptions do you have about disability and people living with disabilities and chronic illnesses? How does that affect your behaviour? It is also vital to make sure disabled people have access to youth groups and organisations, RSE workshops, etc. There is nothing worse than having prepared an amazing inclusive workshop only to forget to make suure the location of the event has an elevator or not hiring a sign interpreter. The most basic thing you should do is educate yourself, be it by filling the gaps of knowledge left by your sex education classes, getting to know your own body or following disabled people and activists online – listen to their stories and broaden your horizon.
- Doing it! With Hannah Witton. What the New Relationship and Sex Education Schools Guidence Really Means With Lisa Hallgarten. Spotify, Sep 2020. https://open.spotify.com/episode/6GFwKbTczBtorhYGnIJilt
- Evans, David and Michael Natzler working with the charity BROOK. Student Relationships, Sex and Sexual Health Survey, HEPI report 139. July 2021.
- GOV UK. Statutory guidance – Relationships and Sex Education (RSE) (Secondary). GOV UK, Updated 13 September 2021. https://www.gov.uk/government/publications/relationships-education-relationships-and-sex-education-rse-and-health-education/relationships-and-sex-education-rse-secondary
- Kaufman, Miriam M.D., Cory Silverberg and Fran Odette. THE ULTIMATE GUIDE TO SEX AND DISABILITY – For all of us who live with disabilities, chronic pain & illness. Cleis Press Inc, San Francisco, United States, 2003, Read how you want – Large Print Books, Braille & Daisy.
- Puma, Romina and Jean Mackenzie. Are disabled people’s sex lives being ignored? BBC NEWS, Disability, 19 February 2016. https://www.bbc.com/news/disability-35561347
- RAINN. Sexual Abuse of People with Disabilities. Online.rainn.org, Accessed February 2022. https://www.rainn.org/articles/sexual-abuse-people-disabilities
- Sexual Health Education for Young People with Disabilities – Research and Resources for Educators. Advocates for Youth, Accessed February 2022. https://www.advocatesforyouth.org/resources/fact-sheets/sexual-health-education-for-young-people-with-disabilities/
- WHO. Disability and health. World Health Organisation, 24.11.21. https://www.who.int/news-room/fact-sheets/detail/disability-and-health
- WHO. Gender and human rights, Sexual and reproductive health, World Health Organization, 2022. https://www.who.int/reproductivehealth/topics/gender_rights/sexual_health/en/
- Witton, Hannah. ROUNDTABLE: Disability, Sex, Relationships and Dating Roundtable. YouTube, 03.10.2018. https://www.youtube.com/watch?v=AvGNiwR57iI