Why people with complex disabilities need sexuality and relationships support
Tracy Girling is a sexuality and relationships adviser for Sense. Here, she explains what that means, and why her role is so important.
The situations described in this post are real, but the names and some small details have been changed to protect privacy.
When Janine, a woman with complex disabilities, met a man at her local gym, she excitedly told the staff in her Sense Supported Living home that she had a boyfriend.
As the relationship developed, and they wanted to spend time together alone in her room, her support team began to panic. Would they want to have sex? Does Janine know about consent? Should they intervene?
This is an example of a situation I respond to in my role as a sexuality and relationships adviser for Sense.
We work with people with complex disabilities and sometimes their families. We also work with support staff, so they can support people to have relationships, and express their identities, without feeling that sense of panic.
The history of sex and relationships support at Sense
At Sense, we recognise how important it is to be proactive around sex and relationships.
Back in the 1990s and 2000s, we had one person in the organisation who provided support around sexuality and relationships. She supported teams whenever there was a problem or a safeguarding issue. It was very reactive.
Then, in 2009, she set up a training course for a group of us to become sexuality and relationship advisers. Some years later, I delivered the training to others. Today, there are eight of us in Sense who give sexuality and relationship advice.
We’re able to be more proactive, and not only respond when there’s a safeguarding issue or perceived problem. Instead, we start conversations and encourage learning about identity, sexuality, relationships and consent.
The taboo around sexuality for disabled people is lifting. It’s now recognised that, like anyone else, people with complex disabilities have a basic human right to loving and intimate relationships, and to express their sexuality and their identity.
How we support people to know their rights
In the case of Janine, I mentored her team in how to support her relationship with her boyfriend. We talked about how to keep her safe, but also when not to interfere, so she could experience the ups and downs of relationships.
Janine’s understanding of sex and consent was limited, so her capacity to consent to a sexual relationship was in doubt. We made sure that her boyfriend knew this. I then worked with her and her key worker for eight months, to help her fill in some of her knowledge gaps.
We talked about how female bodies work, including pregnancy. We also worked on the difference between private and public, what makes a good relationship and the importance of respect and consent in all relationships. We used pictures, symbols, videos, role play and 3D models.
By the end, even though that relationship didn’t become sexual, we felt Janine had a much better understanding and potentially the capacity to consent to sex if she wanted to. She was empowered to make her own choice.
This process also gave her support team more confidence to support Janine with her relationship, even when it wasn’t plain sailing. Although it wasn’t always easy for them to hold back from getting involved when they saw Janine getting upset by her boyfriend’s actions.
Support teams do feel responsible for the people they support, and naturally don’t want to see someone upset or hurt. But for people to experience hurt, disappointment or even grief is an important part of life and learning.
Within Sense, we encourage people to take reasonable risks. We work with them to learn about what could go wrong, and how to deal with it safely, rather than putting in barriers so they can’t do or try things.
The importance of sexuality and relationships education
A big part of reducing risk is having knowledge and understanding. Research shows that the more people with learning disabilities know about sex, sexuality and relationships, the safer they are. As it was for Janine.
If, for example, someone knows how to recognise if something is sexual or private, this empowers them to be able to make safe choices. It also gives them the power to report it if something is wrong or abusive.
In my role, training Sense teams about identity, sex and relationships is just as important as working directly with the people we support.
Through training, workshops and mentoring, we give teams the confidence to talk about identity, sexuality and relationships in a positive and proactive way. We let them know about resources that are available, and what the law says they can and can’t do. We ask them to reflect on their own values, and how that might influence the support they give.
There’s an organisational network called Supported Loving that we refer to – they have a lot of great resources.
The more we talk, share thoughts and ask questions about sexuality and relationships, the more it becomes a part of everyday life. Then, natural learning, discovery, understanding and choice-making can follow.