The Naked Truth - Undressing the Taboo around Sex and Disability
Here we are again with yet another article covering the disparities in society between disabled and non-disabled people. And this time it’s all about sex. I decided to explore this very real ‘issue’ through the lens of the disabled people who ‘suffer’ every day.
Before going head on into the subject of sex, let’s address the elephant in the room, shall we?
Yes, I said the words ‘issue’ and ‘suffer’. Volunteering for a charity or two I came across the internal organisational rigidity around what is ‘socially acceptable’ to write about. And using the words ‘issue’ and ‘suffer’ was a no-go. However, I was born with a disability and have lived on this earth for over 35 years and in my opinion ‘issue’ and ‘suffer’ are extremely valid words in my vocabulary and I have lived experience of them for decades. So, I am in the school of thought that you have to ‘say it as it is’ and ‘don’t sugar coat it for my benefit’, though in the same vein of thought, remember to be respectful. If anyone wants to be sure about dealing with awkwardness around speaking to (and about!) disabled people there is an excellent article by Scope called ‘End The Awkward’ I would recommend for now. For lack of any other ‘vocabulary’ resource around disabilities.
Now we got that out of the way let’s get stuck into the topic of sex and disability, shall we?
Full disclosure, I originally planned to write an interview with Jennie Williams, the CEO of Enhance the UK which is a charity that launched its ‘Undressing Disability’ campaign and is one of the charities at the forefront on the topic of sex within the disability community, especially in relation to the United Kingdom. It was my huge pleasure to get the chance to interview Jenny to gain insight on what drove her to create the charity and it is apparent that having lived experiences herself she is clearly passionate about sex and disability.
However, I soon came to the realisation that the topic is so huge and multi-faceted that I did not want to focus on just one charity, and it didn’t seem fair to write about what this specific charity wants to achieve around sex and disability, or about its achievements. We can talk about awards and successes until the cows come in, but the brutal reality is that sex and disability is still a taboo subject, there is still a long road ahead of us before we can coin the words ‘sexually inclusive’ society (take note, I coined it!) and I do not believe it is the strengths of one single charitable organisation that will fix this, it needs the efforts of the disability community and the openness of society as a whole to embrace the reality.
Charities need to stop hogging the narrative and start an open conversation that really matters and makes a difference to those who need it. It’s not about ‘you’, the charity, and your goals and successes. While that’s nice for you, we don’t care. It’s about ‘us’, those who see no sign of a light at the end of the tunnel. Those who are disabled that continually suffer on a daily basis with sexual issues (here we go again using ‘suffer’ and ‘issues’ in one sentence) and need support to guide us to a solution around how to help us fix the problem. We need those fabulous people who lead by example, who immerse themselves amongst us mere mortals, who get down and dirty and find a resolution to our suffering, and understand us on a deeper level about extremely intimate details that we find the need to disclose only so that we can find happiness in sexual pleasure.
I won’t bore you with the statistics. I have reserved that privilege for later. For now, let’s start by looking at the real-life experiences of disabled people when it comes to sex and sexual expression. Issues around sex can come in all shapes and forms. From the highly intrusive and intimate details, to the basic experience of just dating someone new.
Disabled people live very active dating lives. As Romina says ‘Like many women, I enjoyed going out to meet new guys and would often have a boyfriend’. However, changes in health and circumstances can really affect a disabled person’s confidence around dating. ‘As my condition has become progressively worse, and I have begun using a wheelchair, people no longer see me in the same light’. In Romina’s situation, she is the same person she has always been but the perception around her being a wheelchair user has changed the dating dynamics. ‘Most men I meet can't see past the chair’, she states. The question here is how do we shift the dynamics and change perceptions of non-disabled people?
I have spoken to people who, just like myself, have had their disability since birth. “I was born with my disability and have never had a negative [sexual] experience”, says Richard. He expressed the notion that being born into a disability is far less challenging than having acquired it. In my experience, as a renal patient of over 35 years, I have seen patients who have acquired kidney disease really struggle with their new life challenges. Again, the dynamics shift, and all of a sudden this person concentrates on the ‘loss’. It is almost like a ‘mourning’ period of losing the abilities you had as a non-disabled person. This almost ‘in-built’ confidence of a person who was born into their disability turns them into an expert of sorts, having many years of experience and practice around what they can or cannot do, what they expect from others and what they don’t expect hence providing that much-needed confidence around dealing with other people whether it is related to sex and relationships, or work and employment.
With all his wisdom Richard explains “I have always been honest with my partners so they know what to expect”. The key is to ‘practice’ everyday belief systems that ‘you can and you will’, that ‘you have your needs just like everyone else’, that ‘you are just as valued and your feelings are just as valid as anyone else’. This is not to say that you won’t fall sometimes and have a need to vent or cry from everyday disability related challenges around relationships. As Richard mentions “Yes when I was a teenager I thought I would never get a girlfriend, but what teenager doesn’t sometimes do that?”. The point is to get back up and keep practicing those belief systems that keep you going and remind you of who you really are. Your disability does not define you or your ability to be sexually attractive to someone.
When asking Richard what is the one thing he would advise the disabled community out there about sex and relationships he said: “If I had to advise people with disabilities I would say have an open conversation with your partner about your disability when it comes to sex. They are not doing you a favour by being with you. And if your disability is an issue, tell them to jog on!”. As a person with a disability since birth, just like Richard, I totally agree with this ideal, and that is probably what has given us the skills, knowledge, and practice throughout our lives with our disabilities in order to find our partners. And we are both now happily married.
But it isn’t all fun and roses for everyone, and it is easier said than done. Due to the ‘social model of disability’, disabled people are made to feel undervalued, creating a form of social paralysis that is perplexing and problematic, to say the least. As Melissa mentions, ‘… society, friends and family had told me I should just be grateful that a man desired me’. I can see your jaw-dropping expression, however, more often than not you will hear a disabled person open up to these experiences.
As Dan says ‘I was never under the impression that my wobbly frame was going to drive the teenage girls of North London wild, but the lack of help made me doubt, even resent, my physical self and left me with no idea of how to interact with the opposite sex’. This is him speaking of his experience back in the 80s, being a teenager with raging hormones and a disability. Funnily enough, forty-something years on and we are all none-the-wiser.
I measure disabilities on a spectrum: they are not on a linear scale, a bit like explaining what autism is. You cannot be a ‘little bit disabled’ or ‘a lot’. And this spectrum of disabilities out there can come each with their own challenges around sex. For example, I read an Agony Aunt post once by an individual stating: ‘I have limb impairment which makes it difficult for me to enjoy sex. Are there any sex toys out there which are accessible so I can feel pleasure?’. The topic of sex and sexuality can range from someone who is sexually active and just needs accessible tools to make sex easier to practice, to a totally different part of the spectrum where a person has become completely asexual due to physical trauma around their disability.
And that very person is me, yours truly.
I am not shy to disclose that I have become asexual due to medical trauma. Being a urology patient has meant my bladder since birth has caused several challenges for me. Though I have been sexually active in my life and enjoyed a few years of what I called ‘sexual normality’, I am sad to say that I have reached my late thirties and that is not the case anymore. Continuous and long-term urinary tract infections in a person like myself with lifelong urological complexities are extremely debilitating. The physical trauma understandably developed into psychological challenges around the idea of intercourse. Imagine living your life not being able to have intercourse ever again and finding out that due to that trauma you developed vaginismus?
As defined by the NHS ‘Vaginismus is the body's automatic reaction to the fear of some or all types of vaginal penetration’. And with the added concerns of being admitted into hospital every week due to severe urinary infections – it is no wonder I became asexual over time. And yes, asexuality does exist in the disability community, but it should not be assumed as such by non-disabled people as ‘the norm’. It certainly is not!
When it comes to sex and disability, non-disabled people tend to automatically develop assumptions. As Dan says, ‘In my experience it all begins at school, where putting a condom on a banana is perfectly normal yet discussing disability in a sex education lesson isn’t, thereby keeping the myth that people with impairments are asexual beings well and truly alive’. Though low sexual drive comes with some conditions – such as in renal patients like me – this is not the case across the board. Being ‘asexual’ is a far cry from having ‘low libido’.
And what about the sheer seediness associated with the mere mention of sex and disability? As Professor Thomas Shakespeare, a disabled academic and the writer of ‘The Sexual Politics of Disability’, says ‘I think images of disability and sexuality either tend to be absent - disabled people being presented as asexual - or else perverse and hypersexual’.
What’s more, research and statistics around sex and disability are extremely sparse, as well as media and articles on the topic. How can something so important, that is a basic human need be given the backseat in society? Even the office of national statistics measures the idea of ‘sex and disability’ on a ‘loneliness’ scale. Seriously? Talk about patronising. Why not just call a spade a spade and discard all pretense and stop stepping on eggshells around the real matter at the core here? The notion of sex and disability being a taboo subject needs to be abolished.
Whilst we are on the subject of statistics, let’s assume that the measure ‘loneliness’ equates to anything from ‘companionship to sexual interaction’. The ONS stated that ‘In the year ending March 2018, 13.3% of disabled people reported that they felt lonely “often or always”, compared with only 3.4% for non-disabled people’. The shocking disparity between disabled and non-disabled individuals’ experiences begs the question: why isn’t something being done about it? Why is the subject being censored?
And not only this, more content needs to be amassed in more frequency. Do a quick Google search (I dare you) and you will soon realise the last research topic or national media article is in relation to 2018. Sex for disabled people didn’t stop 3 years ago the last time I checked.
Hold onto your hats people because we are going on a rollercoaster ride of shocking truths here at a time when sexual expression has become far more a norm than it has ever been and even ‘Fifty Shades of Grey’ made it onto your mother’s bookshelf!
The fact is, the explosion of digital content has led to the rise of podcasts, and in the effort to be ‘original’ or the ‘next big thing’ in modern society’s hot topic of the day, some channels have gained a huge following on the topic of sex. You only need to take a quick glance at the fashion and beauty magazine, Marie Claire, in this article ‘The Best Sex Podcasts of 2021’, attempting to jump on the bandwagon of ‘being aware of women’s sexuality and sexual needs’, grasping at what is new in today’s ‘great gossip’ – only to fall miserably short by a mile. And you know why? Because while representation has come a long way to show they ‘understand the people and their needs’ being inclusive of black people, queer people, and plus-sized people, not one of these podcasts is about sex and disability. Go figure, right?
So what can we do about this?
Far from it being my place to give advice, I will at least give you pointers on where to start.
Educate yourself about sex and disability by asking questions, immersing yourself in the world of a disabled community, doing much-needed research and development on the subject, finding out the shocking history of disabilities and sex, working in a care home for disabled people, and experiencing the non-existent interest of institutions around sex and disability.
Talk openly about sex and disability, in an effort to make it a subject that everyone is happy to talk about. This means inclusive sex education in schools, diverse sex podcasts that have a disability focus, opening a conversation with a disabled friend intently listening about their sexual interests should they want to talk about it, speaking to your date about sex if it turns out they have a disability, writing books about it.
Open yourself up to the possibility of dating someone with a disability and getting to know the real person. You may be astonished to find that a person with disabilities has perfected the supernatural skills in astounding resilience, unrivalled patience, humbling gratitude, illuminating foresight, unparalleled endurance, dogged determination, and finally, grace and fortitude.
Challenge the status quo, check your privilege as a non-disabled person (there I said it!), and stand by the rights of disabled people by petitioning, marching on the streets, speaking out, and cheering us on when we talk about the basic human right of sex and sexuality.
Meanwhile, for my disabled friends out there remember that there are organisations working for your sexual rights. There are different schools of thought when it comes to finding solutions for sex and disability related challenges.
Speaking with Richard who has explored the subject for many years around his cerebral palsy, he supports the idea of Sexual Surrogacy. Otherwise known as Surrogate partner therapy, it is ‘when a sex therapist calls on another expert - a certified surrogate partner therapist - to be physically, sexually, or romantically intimate with their client outside of the sex therapy sessions’. It is a paid-for solution as the client – in this situation, someone with a disability with concerns around sex – can seek professional support. Unfortunately, in mainstream media, not much can be found on the topic of sexual surrogacy for disabled people. Marie Claire (sorry again!) has made a great effort to explain how sexual surrogacy works in this article with real-life examples of different types of sexual problems related to individuals using the service, however, without more than a mention of ‘…and often works with blind people’. The lack of representation in mainstream media is appalling.
Of a similar mindset, is another paid-for option to resolving sex concerns for disabled people, known as the TLC Trust in the UK, which is a 100% volunteer-led charity. Clients can pay for sex through this specialist organisation that takes on the responsibility to screen sex workers for their disabled clients. Founder, Dr. Tubby Owens, and author of this article written in The Guardian, states that ‘I really love the idea of sex workers giving disabled people the chance to be touched in a non-medical way, perhaps for the first time in their lives, to be held in a warm pair of arms and have their sexual dreams respected and lived out’. Though this has been a controversial idea, in May 2021, the Court of Protection ruled that ‘Care workers who help disabled people access sexual services are not breaking the law’.
In all honesty, the school of thought regarding paid-for options for disabled people concerns me. Not because I do not agree with these options, as I feel every human has a right to explore whichever solutions they see fit for their own sexual exploration. Being pro-choice means I accept that these options exist and appreciate the giant strides towards helping disabled people over the history of time to give us the basic human right of fulfilling our sexual needs. However, my only concern is that disabled people shouldn’t have to be forced into the margins of society where they are not accepted based on sex and disability issues. I want to fight for the right of disabled people to be fully integrated into society to the point that they are seen as sexually attractive individuals.
However, I appreciate that the notion of disabled people becoming fully integrated into society – from my experience – will take decades to happen, if it ever does. Meanwhile, these are very valid options to explore.
Dr Tubby Owens has made huge strides since the 80s to help people with disabilities gain back their right to sex and explore their own sexuality. Other than the TLC Trust, she also founded in 1999 The Outsiders with the Sex and Disability Helpline, and in 2009 launched SHADA, which ‘aims to support those professionals who include the sexual and relationship aspects of their disabled clients in their holistic care’.
I respect the hard work achieved around involving ‘holistic care’ around disabilities to involve sex and sexuality. However, as a disabled person myself, I wouldn’t want to experience a situation where I had to involve 50 strangers – even if they are professionals and it’s their job to do so! – in my decisions, choices, and interactions around my sex life. It feels to me that the concept of sex in this situation is reduced to an institutional and medical care plan which makes it feel daunting and ever so slightly clinical. In an effort to do good in the name of sex and disability, in my opinion, and for my specific circumstances, this idea scares me and seems more socially isolating than it is intended to be. It is like we have decided to accept that people with disabilities do not have any hope of ever falling in love and finding a sexual partner without a whole planned ordeal. Saying that, in support of the amazing work that Tubby Owens has done over the decades, circumstances are different for each individual and on the spectrum of disabilities – some individuals may not have any physical or mental capability to function sexually. And in these rather extreme circumstances, I would never want to deny anybody the right to sexual pleasure.
Finally, we touch upon the school of thought also supported by Enhance the UK CEO, Jennie Williams who states ‘the option of sex workers is an extremely valid one, but, I prefer to think of disabled people as sexually attractive people’, she says. She continues to say that ‘I worked for years in care facilities since my teens with disabled individuals, and did not feel it was fair that the institutions were set up in a way that there was no care for their sexual rights. For example, they lived in rooms with single beds, never had any visitors like a boyfriend/girlfriend, and when I asked them questions about sex and disability they expressed their loneliness and need to express their sexuality. Every human being in my mind should be able to explore this basic right and I am inclined to agree with Jennie here as she goes on to state ‘Enhance the UK was born from my ability to explore my sexuality, I enjoy it. And I felt that disabled people should have that right too’. The charity works along the lines of educating people about the ‘social model of disability’ focusing on the idea that society builds barriers around disabled people, and by ‘removing these barriers [this] creates equality and offers disabled people more independence, choice, and control’. This includes aspects of sex and relationships.
The bottom line is, it’s up to YOU. You as the reader have the power to take action and speak out as a disabled person to demand your sexual rights, and as a non-disabled supporter to fight by our side and ensure that diversity and inclusion in society are that of true standards: ones that include sexual inclusion.
For more information and useful resources, here is a list of just a few a links suggested to me:
http://www.adultwork.com/ (Also provide sex surrogates)
https://www.scope.org.uk/advice-and-support/friendships-relationships-sex/relationships-and-sex/
Written by Maria Nicolette
Maria works as a Creative Content Writer, offering freelance copywriting, editing, public engagement, social media, communications, and PR skills, and volunteers their time for charities including The Children’s Trust, Ignite Hubs, and Enhance the UK. An ambitious disabled woman, she writes about her passions in an authentic voice and absolutely abhors toxic positivity. So, won’t be sugar-coating the truth!
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