Pre-existing social and health inequalities mean people with learning disabilities are more likely to be impacted by Covid-19 whilst facing more barriers than ever to inclusion in policy development and research.

The Research Voices project is first and foremost about providing a forum for people with learning disabilities to engage in issues that affect them directly, as citizens.

The Research Voices project funded by the Wellcome Trust in 2018 as a joint project between The Scottish Learning Disabilities Observatory and Talking Mats (a social enterprise dedicated to supporting people who experience communications barriers) is one example of how people with learning disabilities can be engaged more effectively. The project established a Citizens’ Jury of people with learning disabilities to debate and deliberate on how to make health research more inclusive and, in the process, challenge structural and attitudinal barriers to involvement of people with learning disabilities in research. The recommendations from this Citizens’ Jury are now available.  

The Research Voices project is first and foremost about providing a forum for people with learning disabilities to engage in issues that affect them directly, as citizens. So, in preparing this blog we thought it vital to ask the group members to share their perspectives on a democratic response to Covid-19. Their responses are woven into this piece and reflect some of the real-life challenges of collaboration during a pandemic.

A photo of members of the Scottish Learning Disabilities Observatory at a Christmas Party

Why should we be including people with learning disabilities in our Covid-19 response?

I’d like to think that we have moved beyond convincing people that it’s necessary for people with learning disabilities to be partners in research and policy that directly affects their lives. But, with decision making processes moving quickly and an increasing demand for digital literacy, people with learning disabilities are at more risk than ever of being excluded from local and national Covid-19 responses.

Is this because we don’t imagine people with learning disabilities in our representations of ‘the ordinary citizen’? People with learning disabilities are, of course, ordinary. Most of the feedback I received for this blog post from the group was about their worries as parents, their fears for employment or the saga of a broken fridge. Ordinary challenges that we can all relate to. But our group also touched on issues that were compounded by experience of learning disability, including:

  • Not being able to access their supported employment opportunities

  • Feeling confused about guidance on Covid-19 (Easy-read and video information is often only available online and days after initial announcements) 

  • Accessibility and dependability of complex health and care support during the pandemic

Time has inherent value in fostering trust and relationships. We can’t expect people to share their stories with us without that foundation.

Susan reminds us that people with learning disabilities aren’t a single, homogenous group. And people with profound and multiple learning disabilities and their families face even more barriers to inclusion, but still have a valuable contribution to make:

“I think for [people] who have a much higher level of learning disabilities there should be a fully trained person to help explain it to them [in] a way for them to understand so that they too are able to be part of making decisions about Covid-19 because they might have a unique answer about it that other people haven't even thought about, because they can quite often see it from another angle, a different way of coming up with answers and questions to do with Covid-19.” – Susan on Facebook messenger

Susan is right.

If we can agree that people with learning disabilities have both an ordinary and extraordinary contribution to make, how can we hear their voices in Covid-19 responses?

People with learning disabilities face multiple barriers to inclusion in public deliberation, and are unlikely to be routinely recruited into Citizens’ Juries, panels or advisory boards unless purposively included. We are unlikely to hear their stories in passive consultation through online surveys or polling. Instead, we need to reach out and meet people where they are at. The rise of self-advocacy movements, representative networks and national involvement groups across the UK offer a useful starting point. In our work, we made the decision to connect locally with smaller organisations and to include people who might not have had the opportunity to participate in representative organisations. 

In our experience of adapting deliberative democracy to be more inclusive, the following considerations are critical…

Resource

A Covid-19 response means allocating resources to dedicated facilitators, equipment, investment in accessible communication and time. Time is perhaps the most challenging resource of all.  

We were definitely struck by the paradoxical truth in the blog post by the Poverty Truth Network that “some things are so urgent that we can’t afford to do them quickly”. We were lucky to be able to dedicate 6-months at the start of our project to building strong foundations for our work with group members. 

Time has inherent value in fostering trust and relationships. We can’t expect people to share their stories with us without that foundation.

The best starting point is asking people with learning disabilities and their supporters what they need to participate.

Covid-19 restrictions mean many organisations are now having to plan their engagement remotely for people they haven’t had the opportunity to meet in person. Concessions will need to be made, but they should never be at the expense of accessibility.

Adaptations

Inclusive deliberative democracy requires reimagining engagement practices. 

We need to think differently and disrupt how we normally ‘do things’. It’s not as simple as ‘translating’ reading materials into easy-read. It’s about giving people time to reflect, process and recall information, thinking about communication first, and creating environments where people are given explicit opportunities to share their views in a safe space. 

We need to revisit expectations, not with the aim of expecting less but the opposite; to allow ourselves to be led in new directions and trust that people who have been marginalised and silenced will often have the most to say.

The best starting point is asking people with learning disabilities and their supporters what they need to participate.

Digital literacy

David says “Some of my friends don’t have face time on their phone and I haven’t spoken to them since March. Some people don’t have phones.” – David speaking to his supporter Laura, who emails me his ideas.

David touches on something important: the lack of access isn’t just about being digitally excluded from opportunities to contribute to Covid-19 decision making, it’s about being cut-off from your peers. The strength of our Citizens’ Jury was peer support and friendship, which is harder than ever to foster right now. Investing in digital inclusion does more than just diversifying engagement, it offers the opportunity for community connection.

That has been the most significant shift in our project since going online – we focus on brokering relationships and offering support.

What’s in it for us?

What motivates professionals and people with learning disabilities to work together? More simply put, what do we owe each other?

For most of our members, relationships motivate them to participate. People with learning disabilities are more likely to feel lonely and socially isolated, even more so during Covid-19. Part of what we can offer is the chance to connect and make a meaningful contribution.  That has been the most significant shift in our project since going online – we focus on brokering relationships and offering support.

Acknowledging different expertise

John comes back to me and says he thinks partnership should be at the centre of the Covid-19 response, and that experts shouldn’t have to walk alone when making decisions.

“But put a disability person with him or her and then not only will that person prosper but give you the world in information that would justify and help the parliament make the best [choices]” – John using Google Drive for the first time.

I can’t stop thinking about “the world in information”, which is exactly what deliberative democracy can offer us. I like the idea that an aim of any work is that everyone involved should prosper. But for now, I’d settle for people with learning disabilities having their voice heard.

Written by Rhiann McLean with contributions from Angela Henderson and the Research Voices Group​.

This piece is part of the "Democratic Response to COVID-19" series curated by Involve and the Centre for the Study of Democracy at Westminster University.

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Rhiann McLean is the Public Engagement Lead at the Scottish Learning Disabilities Observatory. Rhiann leads on the ‘Research Voices’ project, a partnership with Talking Mats which focuses on involving people with learning disabilities in health research. Rhiann’s background is in service development, public engagement and co-production across Scotland’s health and social care services.