Learning Disability Week: Do You See Me?

When we talk about learning disability, there is a risk that we ignore – or worse, forget – our history.  

The theme this year (Do You See Me?) is timely. Because for decades, we did not. Our laws, systems and structures kept people with learning disabilities in institutions, where huge harm was caused, with a legacy of pain stretching for years. 

It is not possible to see people, not meaningfully, if we don’t live in communities where people feel part of everyday life. We can’t see people if they are kept locked away for years. We can’t see people if we still resort to outdated methods of control – whether we call it treatment, or safeguarding, or not. 

In Wales, we should be proud of our history of the first wave of liberation – bringing people with learning disabilities out of institutions and into the communities we live in too. The idea of supported living, of people holding their own tenancies legally, whilst also having support that was provided by a skilled workforce, was revolutionary. I use the words liberation and revolution very deliberately, because at the time, it was. It was seen as risky, dangerous and in some cases, irresponsible. But it rapidly became understood as a reasonable, legitimate response to widespread abuse and silencing of people with learning disabilities. 

Nowadays, supported living is not seen as controversial. That argument has largely been successful – it is now part of the mix of options for people with learning disabilities. And in Wales, because of the activists, alongside practical civil servants and social services leads who weren’t afraid to take risks, our supported living sector feels different. We are predominantly provided by the third sector. And whilst that doesn’t guarantee that it is “better”, it definitely reflects a different approach to services that isn’t always the same in England. 

We now have had generations of people with learning disabilities living within the community, supported well, who are safe, and happy, and able to make their own choices about where they go, what they do, and who they do it with. Sometimes those choices are supported more, or less, but the focus has been quite rightly on rights, choice and agency. 

And yet, despite that success, we still have too many people who are in private hospitals, or who have been sectioned. It is harder for us to see people when they are not living in the community. And if we cannot see people, it is hard to take action to ensure they are happy, fulfilled, involved and making their own choices. It is harder to protect their rights, to campaign with them, and to have people hear their voices. 

At the same time, we are seeing unprecedented challenges to the model of supported living. A model that is based in communities, with the focus on living happy, fulfilled lives, is facing an existential threat. Lack of adequate funding goes hand in hand, it can seem, with a system that does not understand how supported living works.  

These two challenges are linked. When people with learning disabilities are sectioned and kept in institutions, their unmet needs for connection, community and contact can spiral into distress, and all the responses that flow from there – whether harmful to themselves or others, or ‘just’ behaviours that may be seen as unusual. Often, those behaviours are seen as a reason to keep people in specialist units, because they are too “risky” to themselves to be supported in the community. Clinicians will make decisions that are based on the best of intentions, but that ultimately can lead people to being isolated, and at serious risk of harm. 

At the same time, with cost pressures facing supported living as a model, it can be hard for social care teams and / or health professionals to see how someone’s needs can be met in a sector that is struggling. But getting them into supported living is a continued challenge. Housing supply (and quality / accessibility) is a barrier, as is the way in which funding packages are structured – with the age-old question hovering over most people: who is paying for this? There is also the other concern: how can we manage the risk? How can someone with such “complex needs” be supported within the community?  

We know, at Mirus, from years of experience, that when people with learning disabilities benefit from supported living and not a secure unit, their needs change – they are happier, healthier, more connected to communities and their families and they need less support. They are seen, heard and involved. And our communities are richer as a result.  

It is why Mirus is a proud supporter of the Stolen Lives campaign, and during this Learning Disability Week, we want to pay tribute to their tireless work in raising awareness and drawing attention to the lives of people with learning disabilities that are still, too often, out of sight and out of mind. 

If you can do three things this Learning Disability Week: 

• Support the Stolen Lives campaign, and keep updated with what they are doing here. 

• Please ask your local representatives from councillors to MS’ and MP’s, what they are doing to ensure supported living has the funding it needs. 

• Volunteer for a local charity that works with, supports or connects with people with learning disabilities.  

Thank you! 

Oliver Townsend
Head of Policy and Partnerships
Mirus

About Oliver: 
Oliver has worked in the third sector for almost fifteen years, in social care, housing and mental health. As a young adult he volunteered with people with learning disabilities and other disabilities, and at Cymorth Cymru, chaired the Learning Disability Provider Group, representing providers on the Ministerial Advisory Group and other networks. 

With a background in campaigns and communications, he moved to Platfform, a mental health charity that works to shift the narrative around mental health, moving to a non-medicalised approach. He helped set up a coaching service, and delivered and developed a range of trauma-informed and strengths-based practice workshops. 

He has an MSc Econ in Welsh Government and Politics.