Whether it’s leading a discussion with social work students about how to support someone in crisis or sharing our story as part of a campaign, there are lots of ways we can use our experience of living with disability, as Caroline Butterwick explores.

“Nothing about us without us” is the well-known rallying cry of the disability rights movement. Campaigning led by disabled people has brought historic changes, such as the Disability Discrimination Act in 1995. Our voices should be key to developing and delivering services that support us, or in campaigns to challenge discrimination or make vital changes to the law.

My interest in using my lived experience of visual impairment and mental ill health began when I was a student, forming a group with other disabled students to campaign for change. Who better to say how the campus can be made more accessible than those who know the barriers first-hand?

For the past two years, I’ve been a member of the Service User and Carer Reference Group (SUCRG) for Think Ahead, a charity that runs a two-year graduate programme in mental health social work, where those with lived experience of mental illness are active in the recruitment and training of future mental health social workers.

The service user movement in mental health stretches back decades, with the “mad politics” of the 60s and 70s and Mad Pride activism of the 90s, evolving into the modern service user movement. Today, those with lived experience of mental distress are involved in everything from recruiting staff to developing training, with service users playing a key role in the recent Independent Review of the Mental Health Act.

In SUCRG, we co-produce and co-deliver teaching, helping link lived experience with social work theory. SUCRG members are also involved in assessing prospective participants of the Think Ahead programme, interviewing them and being an active part of the recruitment process. One of my highlights of working with SUCRG was contributing to teaching at Think Ahead’s Summer Institute, where their new cohort of trainee mental health social workers first meet over several weeks to learn about social work ideas before starting their on-the-job training. It was great to share my experience of what makes a good social worker, as well as highlighting some of the negative sides of my experience as a service user and what needs to be better. We all carry our own stories and perspectives, and feedback from participants highlights how much they value hearing these.

Why get involved?
Our voices can be used to influence policies and improve services. On a personal level, it can help you develop skills like confidence, team working and public speaking, and in some roles, earn money for your involvement.

For me, one of the unexpected benefits of service user involvement is the chance to take ownership of my narrative. I get to tell my story in my own words in a life that has at times been greatly controlled by others. It’s also satisfying to see the impact of your work. As a disabled student, seeing the university install automatic doors and mark the edges of steps after we raised these issues was a great outcome, and one that wouldn’t have happened if we didn’t campaign. I also enjoy the social aspect of involvement and the sense of solidarity.

Finding opportunities
There are opportunities to draw on your lived experience of disability in a range of settings. NHS trusts and social care providers are a good starting point. They may use terms like “patient panel”, “experts by experience” or “lived experience practitioner”. Universities often have service user groups for their health and social care courses.

Research on the organisations’ websites, as many will advertise opportunities on there, sometimes under categories like “get involved” or on their main jobs page. If you can’t find anything, contact them and ask what lived experience opportunities they have.

User-led organisations are those run by and for disabled people. They exist across the country and are a fantastic way to have your voice heard. Shaping Our Lives is a national organisation and network of user-led groups, service users and disabled people. Their website lists service user organisations across the country. The National Survivor User Network (NSUN) is a great resource for mental health service user involvement. It’s well worth signing up to their weekly newsletter, which links to relevant news stories and research in the sector and lists involvement opportunities.

Charities and non-profits are usually keen to hear from people with lived experience to share their stories to challenge stigma, raise awareness, or contribute to their policy work. Some look for volunteers who are happy to work with the media, and many provide media training to help you feel confident working with journalists.

There are other ways to get involved without committing to being part of a group or regularly campaigning with an organisation. Lots of disabled people use social media or their own blogs to share their experiences. You could also explore creative approaches, like poetry or art. And of course, writing articles about your lived experience is another avenue and could help you reach a large audience. Search online for guides on how to pitch article ideas to editors.

For those in work, look at getting involved in your trade union. Unions often have disabled members’ groups with their own meetings and conferences, and your branch may have roles like an equality or welfare officer. For students, look to your students’ union to see if there’s a group for disabled students – and if not, look at setting one up.

Other opportunities include running disability awareness training, access auditing, peer mentoring, or inspecting services as an “expert by experience” with the Care Quality Commission. In SUCRG, we’ve been meeting and teaching online for the past year, so there are still ways to get involved even with the pandemic.

There is such an abundance of opportunities out there for using lived experience. All of us have something valuable to contribute – so why not explore these opportunities and see how you can get involved?


Photo by Mimi Thian on Unsplash

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