Living Life to the Fullest: Co-Researcher Collective demonstrates the power of grassroots engagement

Disability research has long sought to increase visibility of people historically marginalised due to a disability or chronic condition.

A theatrical mask with a tag that says director. There is also a black clapperboard.

An ESRC-funded project from the School of Education is breaking down further barriers by giving a voice to young people with life-limiting or life-threatening impairments; a group who have until now been excluded from that research.

Young disabled people with life-limiting and life-threatening impairments want to plan their futures and have the space to be normal.

Dr Kirsty Liddiard

School of Education

The Living Life to the Fullest Project has taken the simple but groundbreaking approach of engaging young people living with incurable conditions to become co-researchers, taking an active and instructive role in shaping the research and its outcomes.

They have recruited six people aged from 18 to 30 called the Co-Researcher Collective to co-lead the project, including carrying out data collection through peer-to-peer interviews.

Initial findings suggest frustration that society treats them as 'tragedy cases' because they could die young. This discrimination can be a barrier to enjoying full lives as other teenagers and young people do, according to the research. Attending parties, achieving work and career aspirations and even indulging in rebellious behaviour are among the experiences often denied to them.

Dr Kirsty Liddiard, co-leading the project, said: "Young disabled people with life-limiting and life-threatening impairments want to plan their futures and have the space to be normal. But our initial research suggests they feel their futures are often shut down because they're seen as having short lives. People respond emotionally so they're often stuck with labels like 'brave' or 'inspiring.'”

She added, "This can make developing a sense of identify and self-hood difficult. It's therefore vital that the views of these young people and those of their families are heard."

The co-researchers have provided valuable insight into how to engage these marginalised young people on sensitive and ethical questions. Rather than focusing on illness, the aim is to explore what disabled young people with shorter lives want to achieve.

A website set up by the research team includes blogs from young people such as on the joys of fulfilling 'bucket list' dreams. Lead co-researcher and health and disability activist Lucy Watts MBE writes about her experience camping at a festival and feeling “so free” when she was treated equally to other festival-goers.

Living Life to the Fullest is developing arts projects to capture people's experiences. This is in collaboration with organisations including Purple Patch Arts and the Attenborough Arts Centre.

Dr Liddiard said: "The notion of a dying child is inherently emotive in our culture. But we should be focusing not on pity but on the injustice young people face and how to live life to the fullest."

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