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

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.