This week is Learning Disability awareness week. At Supported Loving we got excited about the theme being sex and relationships (as you can imagine!) but the pandemic resulted in a shift to "friendships and connections during lockdown". We understand the shift, therefore a charter on sexuality and relationships may not seem a perfect fit, but we felt it was important to focus on as lockdown has highlighted just how important relationships are. 

"People with learning disabilities have often not had information or education surrounding sex and relationships."

Lockdown has given many of us space that we do not usually have to reflect on what is most important to us. With all the travel, shops, holidays, and activities removed, what it has shown is we miss the people in our lives more than any pub, shop, or restaurant. Conversations during lockdown with members with learning disabilities have given me insight into how some couples are coping. A few had “bitten the bullet” and moved in together at the start of lockdown, some already lived together but many remained apart and spoke of their sadness and desire to see their partner. Couples living with their partner had companionship and someone to talk to when they felt worried or upset.

Relationships are a fundamental aspect of being human, without these connections we start to fall apart. I have cried several times during lockdown about being restricted from seeing family and friends. Restrictions on relationships and physical contact are so alien to us, yet research shows repeatedly that restrictions in this area are not alien to people with learning disabilities.

As a researcher what has struck me most was how so many people with learning disabilities (and those supporting them) were not aware of everyone’s fundamental human rights, protected by law under the Human Rights Act. They include Article 8 (the right to private and family life), Article 12 (the right to marry and have a family) and Article 10 (freedom of expression and to receive information - this can include information about sex and relationships).

However, research shows repeatedly that people with learning disabilities can be excluded from these rights, with mental capacity and safeguarding being used to justify restrictions. This is not to dismiss valid and lawful reasons for restrictions in this area; sometimes it may be appropriate and necessary to restrict a person’s rights, however this must be done lawfully and only when all other routes, such as education, have been unsuccessful. Sometimes the person has not received any form of support or education to help them to gain capacity, and we know organisations can be overly risk-averse, without valid reasons for restrictions.

'The time for research in this area is over, which is why we're launching the My Rights charter'

As I have said before, the time for research in this area is over. We know what the issues are. Supported Loving is passionate about using research to inform and create real change. We feel a fundamental part of this is making people with learning disabilities aware of their rights in this area, so they know when they are not being upheld and respected - and so the charter was developed.

A new My Rights charter, launched this week, is the work of My Life My Choice, Supported Loving, the National Development Team for Inclusion (NDTi), Tizard Centre at the University of Kent. It comes from two academic research projects, one from Tizard Centre at the University of Kent https://www.youtube.com/watch?v=6xhFNdPkWDg  and one from the NDTi and My Life My Choice https://www.ndti.org.uk/resources/publications/the-right-to-a-relationship.  Both examined the importance of relationships to people with learning disabilities, barriers they faced and the support people needed.

Both studies showed that having a partner gave immense value to people’s lives but sadly people are still not always supported to have relationships or supported to find a partner, their relationships are not taken as seriously as other peoples, they face direct restrictions to developing relationships (such as being told they cannot be alone with a partner) or indirect restrictions (such as no public transport at night to see a partner) and people with learning disabilities have often not had information or education surrounding sex and relationships. We shared both research projects’ findings at events for people with learning disabilities and at our network meetings, where we also got the views of people with learning disabilities to inform what the charter explaining peoples’ rights should include. My Life My Choice were fundamental to the charter's creation and development, providing expert advice on its accessibility and content.

What next?

It is all well and good writing a charter, but this needs to be shared as widely as possible to make everyone aware that human rights apply to all humans, including people with learning disabilities. 

  • Start having conversations with the people you support using this charter, helping people to understand their rights and having conversations about how they might want to learn about sex and / or relationships.
  • Use the charter to help people think about their relationships and how they could develop more meaningful friendships
  • As organisations review how your organisation supports sexuality and relationships – are human rights always upheld and respected? How can we support people to have more meaningful relationships/ friendships?
  • Are other professionals acting unlawfully – do they need to be challenged? Remember best interests’ decisions surrounding sex need to be referred to the Court of Protection; no one else has the authority to do this.

We are calling on organisations to share the charter with everyone they know and to pledge to uphold and respect the rights of people with learning disabilities surrounding sexuality and relationships.