How can we advocate for the sexual needs and identities of people with a learning disability?

When a private life is often almost impossible to maintain due to care needs, how can sexual identity and expression be supported, asks Andrew Hodkin

Photo: sedatseven/Adobe Stock

By Andrew Hodkin

I recently attended a Pride festival in Nottingham, along with two young adults with learning disabilities. What struck me (pleasingly so) were the number of children and young people there. All celebrating, and all supporting the cause – regardless of their own backgrounds, or sexualities.

But as far as I could tell (and you can’t always tell), my two friends seemed to be the only two people there with learning disabilities. In such a diverse event, which celebrated diversity, a certain group of our society were not there. And certainly not because they weren’t invited.

I have worked for 25 years in learning disability services in Nottingham, in social work, social care, and social care management. And in all that time, sexuality, and the expression of it, seems to remain the last taboo.

Progress in education, social opportunities and employment has been made (although there is still a long way to go in all three areas). However the matter of sexuality and relationships has in truth rarely been discussed. It’s poorly taught, excessively risk assessed, and ultimately suppressed. To have a sexual identity and a learning disability is to be in a minority. To be openly gay and have a learning disability? An absolute rarity.

‘A private life is almost impossible to maintain’

So why is this? Well, as a nation in general, we are still rather prudish when it comes to ‘naughty business’. Sex and sexual expression is still predominantly treated as a private matter. And sadly for most people with learning disabilities, a ‘private matter’ is a luxury they rarely have.

To have a learning disability can (although by no means always) mean that you need somebody to care for you, often for 24 hours a day.  A private life is almost impossible to maintain when this is the case.

And when it comes to those who are caring for these people?  Well, they are (usually) all wonderful people, whether that be parents, carers or teachers, who care passionately about those people in their care. But acknowledging the sexual identity of another, and advocating for it, is a scary prospect.

Motivation questioned

There are inherent risks to a care provider promoting and championing the sexuality of someone with a learning disability. Your motivation is questioned – why are you doing it? Is it self-serving? Is it politically motivated? Or worse – is it sinister? In truth, it is often seen as more trouble than it’s worth. So care providers tend to steer well clear of it.

And for those who live at home with their parents – around 80% of adults with learning disabilities – there are many obstacles to face. It is not considered a natural task for a parent to actively promote and facilitate the sexual identity (or indeed sexual opportunities) of their sons or daughters.

Although it can be argued that we are living in a much more liberal and open society than ever before, I can’t imagine there are too many people who would happily discuss their sex life, or need for one, with their parents.

‘Little power over your own life’

It is also the case that there many people with learning disabilities are often still treated like children. We equate adulthood with experience and understanding and wisdom. Wrongly so. If you have a learning disability, and may not have the same level of understanding or awareness as a non-disabled person, this is often equated with child-like qualities – often by parents and carers.

Again, wrongly so. So what if you can’t catch a bus on your own, or you need help with cooking and eating a meal, or you act ‘differently’ when you’re at the cinema? This doesn’t stop you from fancying the man or woman you fancy, or thinking cheeky thoughts as a teenager.

And therein lies the main problem. To have a learning disability usually means to have very little power over your own life. You are reliant on others, often for the most basic of tasks. The power lies inherently in the hands of those who care for you.

They decide what is most important to you. They enable the opportunities you have. They can sometimes facilitate your whole life.

And if care providers are scared to talk about ‘it’, which they are, you’re not going to hear about ‘it’.

There are too many reasons why the suppression of sexuality for people with learning disabilities happens to be discussed in one article. Room should be left for what we can do about it.

So what can be done?

I would suggest three main areas.

Firstly, we must look to other countries, namely our northern European neighbours. There is a full acknowledgement of the sexual needs of learning disabled people, and services in place which can facilitate this. In the Netherlands, for example, there are organisations which support disabled people to have sexual relationships, such as Stichting Handicap & Seksualiteit, a service that not only provides sex workers, of all genders, but also sexologists, therapists and emotional befrienders.

This may raise many moral questions to many social workers. Is it exploitative? Could a local authority legitimise a form of, in some people’s minds, prostitution? I would personally disagree, and feel that the Netherlands has a much more sophisticated and mature approach, which is not hindered by the ethics of social care workers, but focused entirely towards the needs of service users.

Secondly, there needs to be more education for people with learning disabilities about sexual identity and sexual expression. And it needs to be balanced, with equal importance placed on not just the safeguarding aspects of sexual education, but the promotion and celebration of sexuality as well. And this needs to given at school, so that everybody can access it, and then within adult care settings too. And of equal importance, that education should be extended to those who care for people with learning disabilities.

And finally, there needs to be bravery on behalf of those who care. It’s not an easy prospect, but unless those who care really start to advocate for those they are caring for, very little will change. This will come from forward-thinking parents and carers finding their voice (and more pertinently making sure that other people hear it) in a collective manner. And lobbying of both care commissioners and inspectorates, to ensure that they place as much emphasis on the expression of sexuality as they currently do on the safeguarding of it. Once that balance is addressed, real change may occur.

I look forward to attending future Pride festivals in Nottingham where everybody is enabled to attend.

Andrew Hodkin is a manager in a short breaks unit for people with disabilities.

4 Responses to How can we advocate for the sexual needs and identities of people with a learning disability?

  1. Veronica Knowles January 31, 2020 at 2:31 pm #

    I whole heartedly agree. As a former social worker and mother of two children on Autistic Spectrum I have faced this issue. My son received no formal sex education and is currently being prosecuted for downloading indecent images of children. His area of interest? Teenage boys. When questioned he didn’t understand what he had done wrong. They looked happy, he thinks he may be gay and was curious. While not condoning child pornography or Exploitation it is easy to understand how he found himself in this position. If we don’t accept and promote appropriate outlets our young adults will find their own.

  2. Petronas January 31, 2020 at 2:42 pm #

    Leaving aside the very reasonable observation that ‘Pride’ is in no way formally representative of many people’s sexual identity (whether gay, het or trans), there is a potential profound moral conundrum here in terms of social work professionals and carers effectively being asked to endorse the purchase of sex for money to satisfy the genuine and of course natural sexual instincts and needs of people with a significant physical or learning disability. The wide range of British societal mores currently present a very high bar indeed to the realistic acceptance of the concept of (for example) a male sex worker engaging in sexual activity (however consensual – and however that consent is assessed) with a vulnerable female (presumably in private!) The legal, political and moral architecture simply does not exist in most countries to support such a practice and the construction of the necessary societal logistics in this area would at best take many years if it were to take any shape at all. It would of course have to take account of the essential safeguarding concerns which ALREADY shadow vulnerable people (especially in the on line world). I’ve worked in residential environments with young people several of whom have raised major challenges to professionals in terms of those young people’s desires and attempts, shall we say, at mutual sexual intimacies and so I am alive to the difficulties this whole issue presents to professionals and carers and I recognise that I have not provided an alternative to the author’s suggestions. However I suspect this discussion will remain in the philosophical realm for some time to come.

  3. Anna February 7, 2020 at 7:47 am #

    The “mature attitude” to the legalised sex trade and prostitution in countries such as the Netherlands and Germany is exposed in articles such as the one here:

    https://www.theguardian.com/global-development/2019/jun/22/trouble-in-paradise-rise-and-fall-of-germany-brothel-king-jurgen-rudloff

    There is now plenty of evidence that, rather than “cleaning up” the sex trade, legalisation, and the increasing “demand” it leads to, is fulling sex trafficking.

    Whilst I agree entirely that people with learning disabilities should be promoted and supported to express their own sexuality, there is no given “right” to a sexual partner – unless one is an Incel, of course. There are plenty of people without a learning disabilities who have none.

    And until you, the author of above article, as well as society as a whole, would openly expresses pride and joy at their own or their spouse’s/son’s/daughter’s profession as a prostitute, fully confident that they are safe and valued citizens, following a job like any other, please don’t expect anonymous “others” to make the sacrifices for “advancing the sexuality” of others.

    • 'L' February 7, 2020 at 9:18 am #

      This is a great comment, Anna. Nobody is ‘entitled’ to a sexual partner, and we cannot take for granted that socially sanctioned ‘sex work’ is non-exploitative or safe.

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