Written by Steph, one of Designability’s Lived Experience Advisors
I’m going to be honest, when I applied to be a Designability Lived Experience Advisor, I didn’t know what I was signing myself up for.
Had I heard of Designability before? Nope. Was I familiar with their work? Not really. Did I know what project the Lived Experience Advisors would be working on? Also no.
All I knew was that Designability were looking for people with lived experience of disability to take part in a ‘groundbreaking study on disability and inclusive design’. As someone who works in the arts, with a focus on inclusive practice – and an interest in co-production – I was intrigued.
I don’t usually jump head-first into something without knowing what it’s about. But what swayed me was the language: ‘We’d like to work with you..’ the call-out said. Immediate tick. ‘This is a paid opportunity’. Another tick. And, ‘We’ll work in ways that suit you best’. I was sold.
Language can exclude people from the get-go, but this sounded like an organisation I could trust. The focus was on working together, alongside and with (not ‘for’) disabled people. Paying for peoples’ time showed they valued lived experience as a legitimate form of expertise. And offering flexibility in how people work showed an awareness that people are disabled in different ways, and a willingness to find individual solutions.
So, I applied.
The challenges of sharing our Lived Experience
A month later I heard that I was one of ten Lived Experience Advisors chosen from nearly 900 applicants to help with The Unfair Index. The Unfair Index is a UK-wide survey to find the biggest barriers that disabled people face everyday life. Our role as advisors is to give honest feedback to help shape the survey, test for glitches and usability, and most importantly to bring our own lived experience to the table.
This is the first time Designability had worked in this way, inviting external Advisors with lived experience into the planning process. It sounded exciting, and I was keen to see how things work behind-the-scenes.
Like many, I’ve been burnt in the past by organisations and people I thought I could trust. Even those who appear disability-aware have the capacity to cause harm, intentional or not.
So, while Designability’s inclusive language sounded promising, I started my journey cautiously. I was excited to get a chance to shape this research, and to apply my lived experience to it; but I couldn’t quiet the anxious voice in my head. What control do I have over the things that I share, and how will it be used? How safe is it for me, really?
Sharing lived experience is never a neutral ask – it is always political, always comes with a risk. Trust is not a given in any co-creation process. It has to be earned, slowly.
Building trust
I have been a Lived Experience Advisor for five months now, and one of the trust-building moments for me was how Designability responded to our first round of critical feedback. The first survey draft was too long, with confusing categories, and as Advisors we were frank about where we saw weaknesses. The Designability team dismantled the draft and completely restructured the survey based on our feedback – not an easy task!
As Lived Experience Advisors we don’t have complete power; that would be impossible. There are many voices around the table, each with our individual views and priorities. Sometimes the advice we give is conflicting. There are also organisational processes and limitations that we are not privy to.
But it comes back to trust: being clear about what is in scope for us to change and trusting the expertise of the team to deliver things which are beyond our control. And trust that the changes we have suggested along the way have made it stronger than it would have been without it.
About the author:
Steph Roberts (she/her) is a multi-passionate creative from South Wales. She works with artists, writers, museums, galleries, arts organisations and charities to highlight and disrupt systems of exclusion, particularly around (in)accessibility in the visual arts.