The ambitions and future goals of disabled young people with life-limiting and life-threatening impairments are being documented for the first time in an innovative study.
Initial findings suggest that this group of disabled young people feel 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.
The ESRC-funded Living Life to the Fullest project led by a team of academics, Kirsty Liddiard, Dan Goodley, and Katherine Runswick-Cole at the University of Sheffield will be the focus of an event as part of the annual Economic and Social Research Council’s (ESRC) Festival of Social Science.
Professor Jennifer Rubin, ESRC Executive Chair, said: "The Festival of Social Science is one of the largest co-ordinated endeavours undertaken by a science community and demonstrates ESRC's commitment to public engagement. We know social scientists and economists value the opportunity to talk with the public to make an impact with their work. These events should inspire young people to pursue a career in social sciences and raise awareness about the impact made to wider society."
Dr Liddiard, from the School of Education at the University of Sheffield says: "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.'
"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."
Life-limiting or life-threatening impairments are those with no reasonable hope of cure and can result in early death. Until now, this group has been excluded from disability research.
Dr Liddiard and her colleagues have set out to listen to people’s stories to increase understanding about their experiences. 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.
These have been conducted via Skype, FaceTime and Facebook Messenger which is a departure from the traditional method of travelling to meet interviewees. "This group of disabled young people is often seen as hard to reach and that engaging with them takes time and resources," says Dr Liddiard.
"The co-researchers’ advice on asking these marginalised young people sensitive and ethical questions has been invaluable. We're not solely focusing on issues such as end-of-life, being at-risk or 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 treated the same as others at the event.
The next step is to carry out in-depth interviews with around 20 parents. Getting their views is important, Dr Liddiard points out, because disabled young people with such conditions often spend more time within families because they often do not go off to university.
This is predominantly because of the considerable barriers they face within education. Dr Liddiard says: "It's extremely difficult for a parent knowing they might outlive their child. But these parents are fighting for their children's futures."
Living Life to the Fullest is also developing arts projects such as a poetry workshop to capture people's experiences. This is in collaboration with organisations including Purple Patch Arts and the Attenborough Arts Centre.
Says Dr Liddiard: "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."
Dr Liddiard and the Co-Researcher Collective will be sharing their findings as part of an event entitled The Co-Researcher Collective: Living Life to the Fullest on 6th November for the general public, academics, practitioners, disability activists and organisations, and students. The event is part of the ESRC’s flagship annual Festival of Social Science.