17th September 2019 • My Family Our Needs

This week is Sexual Health Week. With a focus on inclusivity, there has already been much talk about the lack of inclusive relationships and sex education (RSE) in schools. Specifically about how disabled people are missing out as a result.

When RSE becomes mandatory in schools in 2020, it will be more accessible to everyone. However, how useful will this be if disabled people aren’t receiving practical support to put their learning into practice?

In this article, Dr Claire Bates from Supported Loving discusses how social care settings and supporters could put more practical steps in place to help disabled people explore and sustain meaningful relationships.

Supported Loving believes passionately that every person, whether they have a disability or not, has the right to a sexual relationship. We know from speaking to people with learning disabilities that may need extra support in this area, especially if we want their experiences to be positive and satisfying.

Listening to what people want.

Within my role as a researcher for the University of Kent’s Tizard Centre, I worked on the Love Project where we interviewed 40 people with learning disabilities to hear their experiences and understand the support they need in finding, developing and maintaining intimate relationships.

Our research found that many of the people had not had any formal education around relationships or sex. In particular those over 30 years old!

We did speak to a number of young people who had received RSE in schools and colleges (which was positive to hear). However, the quality of that education was not explored. We also spoke to parents and some said they had been sent information home about what the person with a learning disability had learnt to help reinforce the learning at home. HOWEVER, we know that this is not happening universally; RSE is currently not mandatory in all schools but will be by 2020. This is great for younger people but what about those who have left their school days far behind?

Having access to relationships and sex education that is tailored to meet a person’s needs is fantastic, however, it can be hard to find.

Once a person leaves education it is often down to charities and not for profit organisations (like many Supported Loving members) to provide this, sometimes unfunded. With over a decade of austerity social care organisations are feeling the pinch, some organisations that provided this resource are no longer in operation and many community learning disability teams are stretched to capacity.

The biggest concern we heard as part of the Love Project was that even if people had access to the best relationships and sex education available, it was all a moot point if they didn’t have a partner.

The most pressing issue we hear at Supported Loving is that many people with a learning disability desperately want to meet a partner, but they struggle to find someone and are often unsure how to go about this, in a safe way. Being able to provide positive, inclusive RSE featuring information on relationships that useful to disabled people is awesome. However, social care organisations are central in helping people to find a partner so they can actually use the knowledge they have learnt on a course. Here are a few practical ways this could be done:

Not letting relationships ‘fizzle out’ or fail to develop

This issue was raised in both our research and speaking to people as part of Supported Loving. People were unable to travel to a partner’s house if they lived ‘far’ away, this wasn’t a typical long-distance relationship but, actually, it becomes a long-distance relationship if you need to get a taxi because you cannot travel independently or there is no staff to drive you or this is not included as part of your support. This all makes it difficult to see partners. Relationships often fizzled out as people just didn’t see each other very often.

We also heard about partners just seeing each other ‘at the day centre’ or ‘at a social club.’ Staff saw these as ‘not real relationships’ as people had not been supported to develop the relationship into something more meaningful, and perhaps didn’t know how to do this themselves. It is sad if a person finds someone they could potentially love and for the relationship not to develop. If people are to have meaningful relationships, helping them to develop and then maintain them needs to be a priority.

Meeting partners

Both in our research and via Supported Loving, I hear people complaining that it is very hard to find a partner. Living in residential care can be restrictive as many activities are geared towards ‘meeting friends’. Some people felt they would prefer to have had opportunities to meet people in different more ‘normal’ contexts like the pub or other ‘outdoor’ activities away from learning disability services.

At Supported Loving what we often hear is that people have friends but are often lonely as they don’t have a special someone, which is clearly different. For others, context can be an issue, for example, discos/clubs can be ‘too loud’ to meet a potential partner.

If we want people to meet that special someone, we need to think about how they will be best placed to do this based on their individual preferences. Supporters need to think about how we go about meeting people we have relationships with, how did we meet them and build up a relationship? The people we support are the same as everyone else – but they may have missed out on the years of practice we all had due to restrictions such as from staff or parents.

Staff attitude

There is a body of academic research to demonstrate staff can potentially “make or break relationships” for people who have social care support. If staff have a poor attitude to relationships then it doesn’t matter what positive messages people hear as part of a relationship and sex education course, the relationship can be stopped or kept at a surface level. We often hear of restrictions that infringe on people’s human rights such as not being able to have private time with a partner, being stopped from having someone stay overnight and parents being able to dictate an adult’s relationship choices. As supporters, we need to make sure people actually get to use the learning from relationship and sex education to develop meaningful adult relationships that are right for them.

Supported Loving is a firm advocate of inclusive relationships and sex education for all but we must look at how we are supporting people in relationships. It is demoralising to give someone education about relationships and sex and then support them in a way that means they will not be supported to find a partner or to have a relationship and get the chance to use their learning in action.

To continue the conversation on disabled people and relationships, join the National Supported Loving Network (sign up to the mailing list) and help us make love and sex a reality for all.

Don’t forget! Follow #SHW19 on social media and check back tomorrow to read our blog from Georgia Harper, co-presenter of last year’s Channel 4 documentary ‘Are You Autistic?’ about her personal experiences of autism and relationships.