We have opened the Valentine’s can of worms – have you?

Reasons why couples with learning disabilities did not share a bed:

1. They never asked: 23%
2. They only have a single bed: 19%
3. Their parents did not want this: 14%
4. The staff felt uncomfortable: 10%
5. The organiation/ manager said it was not allowed: 10%
6. They lacked capacity for sex: 10%
7. The couple did not want to: 4%

The above results came from a social media poll of professionals working with people with learning disabilities, conducted by Supported Loving. 

It is 2018. The ‘sexual revolution’ happened almost 50 years ago yet many people still compare speaking about the intimate lives of people with learning disabilities to ‘opening a can of worms’ and often say “we don’t won’t to go there”. At Supported Loving we think this needs to change. The cultural barriers have again been highlighted through a social media poll we’ve conducted with staff working with people with learning disabilities.

“Going to sleep snuggled up next to your nearest and dearest is not even considered as ‘something for people like me’.”

‘People need to open the damn can!’

Our poll has found that many organisations are keeping the can shut – some may have nailed it shut. At Supported Loving we know “this” is not always easy, we don’t have all the answers and organisations do not need to be perfect, but we need to start having real conversations about sex and relationship and not just paying lip service.

• Join the Learning Disability Today study day

Conversations such as ‘why don’t many couples ever stay overnight with each other in a supported living house’? Supported Loving ran a survey on social media to explore the topic of overnight guests in 24-hour support. Most adults (married or not) share a bed with a partner. This is something we take for granted and some may remember feeling frustrated if our parents made our partner sleep in the spare room when living at home!

Do people with learning disabilities understand their right to have a partner stay in their room?

• No = 71%
• Yes = 21 %
• Don’t know = 8 %

We found that staff felt most people with learning disabilities who can consent did not understand they had the right to have someone sleep in their room.

So, what was stopping people?

The responses were mixed but painted a grim picture. People were being restricted through a variety of barriers.

• Support restrictions – either policy or management prohibiting this or staff feeling uncomfortable
• Parental Control – this survey did not include people who lived at home, just people living with 24-hour support. However, parents were still control of an important aspect of their adult children’s lives
• Environmental restrictions– People only had a single bed- how many adults in 2018 have a single bed? Single beds = single lives
• Unaware – Most staff reported the reason couples did not share a bed was that people had not asked. If enabling people to lead sexual lives can be seen as ‘opening a can of worms’ then we suspect that some staff would not want to suggest something that the person didn’t raise themselves. However, if the person doesn’t know they are allowed an overnight guest, why would they ask?

Perhaps the saddest option could be that people did not even expect this. Going to sleep snuggled up next to your nearest and dearest is not even considered as ‘something for people like me’.

It is clear from what we hear at Supported Loving and the survey that people with learning disabilities need to be made aware of their rights to a loving sexual relationship and to challenge barriers, with support if needed.

Professionals who work with people with learning disabilities also need more support to do this confidently and appropriately.  We asked support workers for their views on this issue – here are some examples of what they said:

Many people want support to ‘open the can’ – THIS IS OK. People should be able to say “I don’t think we have this right, what can I do?” We asked people who completed the survey what would help to change practice and enable more people to enjoy a loving sexual relationship?

There was a resounding message staff wanted more training for themselves and the people they support but also wanted an open space for discussion with others in similar situations. They felt that education should also include families and social workers due to the influence they have. Here at Supported Loving we care passionately about people with learning disabilities having access to the right information about sex and relationships and having the space to have these, often challenging, conversations.

I want to “open the can” but I am scared…. What can I do? Join Supported Loving ?? Why…?

• We have regular network meetings around the country – you can come and talk to likeminded people about any worries you have and get advice
• We have people from all backgrounds (including specialist sexual health and personal relationship trainers) who can help you
• We have a Facebook group where you can also chat between meetings
• We have fun workshops/ presentations at each network to share good practice which help to develop your confidence and provide inspiration and support

Let’s open the can together!