Key Findings

The findings of this project were developed through a process of collaborative analysis with the Co-researcher Collective. Much of this work was was carried out at an Analysis Retreat and was supplemented by virtual analysis workshops.

Our key findings are written in full below. However, we also provide a shorter summary available in a downloadable PDF and PowerPoint Slideshow below. Alternatively, you can watch our short film!

1. Young people routinely carried out multiple forms of work across the many spaces of their lives:

(i) relentless management of care/negotiating access in the built environment (care management/bureaucratic responsibility)

(ii) emotional work on self and others, particularly parents/family (see family section) – some examples: young people carrying/bearing the emotional trauma/responsibility of impact of disability on family, feeling intense guilt for family breakdown/difficulties/divorces, and even guilt/sorrow for being born at all;

(iii) identity work to reclaim a desired self in dis/ableist contexts;

(iv) managing disablism, across multiple areas of life (access, exclusion, missing out, media stereotypes);

(v) self-advocacy and “fighting” for rights, access and equal treatment: fighting to be heard, seen, fighting to stay alive and thrive;

(vi) emotional work of regular losses: of dying friends/peers (this is very common for young people with LL/LTIs), PAs who leave once a friendship/dependence has built up, loss of independence through impairment progression (but no support in emotional working around dealing with loss);

(vii) often young people with LL/LTIs were engaged in care work for others as young carers, but this work was never acknowledged.

While young people readily listed/articulated multiple forms of work and labour, they didn’t always acknowledge it as such, and added to this, such work/labour/expertise was seldom recognised by professionals around the young person, and for many, their parents and families.
2. Illness and/or progression are only conceptualised as threat and jeopardy – living in this holds a number of impacts for disabled young people with LL/LTIs. Critically, illness impacts self, present and future: a precarious time of pain and reflection upon the future as something possibly denied. It often brings a “loss” – of independence, wellness, and stability. Hospitalisation brings difficult experiences, for young people and their families, and can bring about a whole host of changes/conditions for living. Yet illness brings young people an intimate knowledge of the body, but doctors do not appreciate this knowledge, or realise that young people are experts of their own bodies and experiences. Their knowledges are routinely devalued, or actively disagreed with and undermined.
3. Thriving: young people routinely identified as striving and thriving – we need to recognise this as a key part of the project – young people have strong desires to live full lives in the present and the future, regardless of how much time they have to live. Young people we spoke to wanted to live: take risks, make mistakes, experience, learn, love and live fully (but often they did not have the space to). Young people were often creative in their approaches to living and achieving, and were able to articulate their achievements and self-pride in knowing how to live in often difficult circumstances. Our problematic cultural constructions of death, dying and fragility, and our difficult (deeply ableist) social attitudes towards death, left us concluding that society has a lot to learn from young people with LL/LTIs, who value their lives deeply, regardless of the difficulties.
4. Young people could readily talk of sexual ableism and its impacts in their lives, and used the interview space to claim a sexual self and identity: (i) disability and disclosure in online dating; (ii) loneliness and difficulties in socialising and integrating; (iii) difficulties of familial care and PAs in realm of love and sex; (iv) families’ low expectations of intimate futures; (v) poor sex education; (vi) the power of others’ ableist perceptions in shaping sexual self and sexual access; (vii) validation of sexual self only usually came from others (e.g. partners), not something easily achieved by yourself; and (viii) difficulties in thinking about reproductive future and family-making in the context of LL/LTIs.
5. Young people experienced what we have called the push and pull of care. Good quality care and support are integral to everyday life, and for young people to achieve their ambitions. However, at the same time, care can bring considerable labour for young people, instability, and is often that which needs to be mediated and skilfully managed. For some, it is experienced as a lack of privacy, a feeling of not having control, being dictated to, being manipulated (to use the word of one young person), and can bring a loss of spontaneity, which our young participants said was important as young people. For some, care and being cared for is an emotional experience, which regularly involved building up relationships with PAs, with little support available when PAs had to leave, move on etc.

6. Young people had complicated feelings about future, death, dying and legacy. Young people weren’t always explicit when talking about death and dying; talk about death and dying was talked about through talk about illness and future. However, we did question our approach to asking questions about death and dying, that we weren’t explicit here, and so did this impact upon young people’s stories of death and dying? We found that young people had both pragmatism and a desire to live life to the fullest, despite shortened life expectancies. There was a consciousness to wanting to “cram” life in; to make the most of life. Some told us that they doubted health professionals’ perspectives about life expectancy and that “goal posts” about life expectancy were often moved by health professionals as young people aged. For some young people, this meant living in a ‘liminal’ space where they had little knowledge of how long their lives would be. For some, this eventuality impacted life planning, particularly over their thoughts about having a family. Importantly, legacy – being remembered and leaving something of value to the world – was very important to most of the young people we spoke to. Young people wanted to be remembered by family and friends, and have taken different approaches to what they want to ‘leave behind’.