Just yesterday I was working in the Midlands and I said something I find myself saying a lot “never did I think I would talk about sex and relationships as much as I do at the British Institute of Human Rights”. This always raises a smile, but it is a very serious point. At BIHR we focus on supporting people and their organisations to use human rights in their everyday lives. A significant amount of our work is focused on ensuring people with learning disabilities, Autism, or both (and other mental capacity or mental health issues) are empowered to live equal and dignified lives. So today’s reports on the BBC News story about the lack of support people with learning disabilities receive to enjoy their relationships, is something that really strikes a chord with us.

Why this is about human rights

Being in a loving relationship is something many people want (and many don’t!). And importantly, our human rights law recognises this need and specifically protects our rights to form relationships. The right to respect for private and family life, within our Human Right Act, applies to all people in the UK. The starting point is that we all have this right, irrespective of our age, gender, disability, etc. Human rights law does allow for restrictions of this right, but only where such a restriction is lawful, necessary (to protect a person or the community) and proportionate, i.e. the least restrictive option in the circumstances. Sadly, what we see at BIHR, and what today’s BBC News stories showed, is a tendency to focus on restriction first, and not people’s rights.

Misguided “protection”

Too often we see services sweep in and assume that a person cannot have a relationship because they are disabled or unwell and therefore staff can simply put a stop to relationships. Or if the relationship is “permitted” (we query this term!) then it is still heavily restricted. A classic example is that of Joanne and Lee featured into today’s news and their accommodation providers not allowing the couple to spend the night together. When we’re working with services we ask questions about where such bans come from; would they be in place for people without a learning disability? The response is often one about safeguarding, and the need to protect people. Generally this will come from a positive place, of wanting to do the best for (or to) people. Whilst this may be well-meaning, it is long way from doing the best with people, which is what a human rights approach advocates.

When faced with questions about safeguarding we ask, what is being protected? The link between rights and safeguarding seems to have been made invisible in recent years, but if we return to the founding document No Secrets (Guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse), it clear states “this guidance …results from [the Government’s] firm intention to close a significant gap in the delivery of those rights alongside the coming into force of the Human Rights Act”.

Safeguarding is – or should be - about protecting people’s rights under the HRA. Rights to be free from abuse and ill-treatment, to have liberty, choice and autonomy protected, to not be discriminated against. Safeguarding should be all about human rights. When looked at from this perspective, the focus is on maximising people’s control over their lives and only stepping in to restrict rights where it is necessary and proportionate to do so. A human rights approach by services mitigates against the risk-adverse responses that focus on shutting down and treating people differently, whilst also providing a framework for the appropriate management of potential safety concerns.  

Difficult conversations don’t trump rights

Other times, however, a lot of the restrictive practice we see around supporting people with learning disabilities and/or mental health issues, to have relationships, stems from the difficulty of talking about sex. Conversations about sex and relationships can still be considered taboo or embarrassing for some. But that is where using a human rights approach becomes helpful. The law, our Human Rights Act, sets out the rights we all have to form relationships and the duties on public officials to respect and protect these rights. That means conversations about these topics, irrespective of personal feelings, are the job you do when providing care and support, accommodation and treatment, etc. Staff in these services tell us that this can considerably reduce the anxiety the feel in broaching these topics, and ultimately leads to much better decisions for people:

In one of our local based projects, Ishmael and his partner Eve had decided that they would like to get married. Ishmael was a long-term patient at a mental health hospital, and his consultant was not sure whether the marriage should be allowed as Ishmael’s mental health issues may have impacted his decision-making. Having received support on using human rights as an everyday decision-making tool, staff at the hospital did not jump to conclusions about what was best for Ishmael based on his mental health issues. The consultant and care team reflected on how Ishmael’s human rights might be affected by their decision. They recognised that not allowing him to marry might have a negative impact his right to marry and found a family and his right to respect for private and family life. They knew that under the Human Rights Act NHS staff have a duty to respect and protect patients’ human rights. Making sure they were considering Ishmael’s human rights, staff felt better equipped to move away from a model of decision-making that focused solely on risk and harm avoidance, towards a model that included potential for the people in their care to lead full and flourishing lives. Staff took every step that they could in supporting Ishmael and Eve to marry.  

However, we know from Joanne and Lee’s story and the experiences shared by others on the BBC News today, that such approaches are rare. This too is backed up by the research, such as “Right to a Relationship Research” released by NDTi and My Life, My Choices this summer, which found “people with learning disabilities want to have relationships. They are the same as people without learning disabilities: having different relationships – friendships, romantic and sexual relationships – is an important part of their lives. However, unlike people without learning disabilities, institutional and attitudinal barriers prevent many people with learning disabilities from exercising and enjoying this fundamental human right.”

Using a human rights approach everyday

Ultimately, we know that using human rights in a practical way supports people to live more dignified and equal lives. This is important for us all, but especially for people like Joanne and Lee, who are subject to significant interventions, restrictions and barriers on their lives due to having a learning disability. At BIHR we often advocate a quote by Eleanor Roosevelt (who was one of drafters of the first international human rights principles). She said:

'Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighbourhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.'

It is hard to think of a more shared small place, than our homes and people who we share our lives with, or a more important place for our human rights to have meaning.

 

Find out more:

To find out more about your human rights visit our new online advocacy tool Know Your Human Rights here.

More information on your right to respect to private and family life is available here.

More information on how to identify if an issue you face in health or care raises a human rights concern is available here.

More information on what to do if you are concerned about your human rights in health or care, including support to write complaints, is available here.