Planning For The End Of My Life, Aged Just 17, Made Me Live A Life That Ensured I Wasn’t Forgotten

By Lucy Watts MBE

I’m 23-years-old; an age, if I went by my prognosis, which I should never have reached. I have a life-limiting condition. Yet, my life is pretty amazing. However, if I told you the reason my life is so great is because of my condition, would you believe it?

I was born with health problems that went undiagnosed and unconnected despite seeing many professionals over the years. I deteriorated throughout childhood, living an active life despite my struggles, and hiding what was going on as best I could. When I got to the age of nine things started to deteriorate more quickly, from age 11 I had physiotherapy and despite being active riding horses and working at the stables, my deterioration continued until my body gave up in January 2008. I became disabled. My condition continued progressing, my muscles were wasting away, my internal organs were failing one by one, I was needing ever more invasive interventions until 2011 when we received the news that my condition would drastically shorten my lifespan. I received the news in 2012 that I wasn’t expected to live another five years.

Being told your condition is life-limiting was devastating, but the funny thing is I refused to believe it. In my mind’s eye, I never saw myself having a short life. However given the diagnosis I needed to start my end of life planning. I needed to put things in order and my advance care plan completed to ensure my wishes would be respected and followed and I was prepared for my end of life care and my death. That was first completed in 2011. It was even more important when we found out in 2012 that my prognosis was expected to be less than five years.

However, it was doing that end of life planning in 2011 that led to me having a whole new life. An exciting, purposeful, enjoyable life, in spite of my deteriorating condition and all its complications and the limits these impose on my life. I would start to truly ‘live’ again and have a life to be proud of.

As my mum, my hospice nurse and I sat going through the plan and documenting my wishes, I suddenly blurted out that I was scared I’d die and be forgotten, that nothing would be different or better because of me and my life wouldn’t have meant anything. It even surprised me, what I’d said, as I’d not consciously ever really thought about that. That sudden exclamation would change my life.

Two years on from that conversation, my nurse heard that a children’s palliative care charity were looking for a young person to speak at their reception in the House of Commons. My nurse put me forwards for it, and when asked, I accepted the role. I started writing my speech in earnest and practising and the day came up thick and fast. On the 19th November 2013, it was the day that would change my life. After moving and mingling with MPs, eminent professionals and charity representatives, it was my turn to speak. I drove up onto the stage, turned to face the one hundred or so people in the room and I delivered my speech. I said my final sentence and then looked up from my papers to see the room erupt in applause. I’d done it. What an achievement it was.

Since that day, I’ve achieved an awful lot. I’ve written blogs and articles for various places; written forewords to three guidances and a book; I’ve delivered many speeches at events from national conferences to meetings to informal groups; I’ve appeared on television and radio and in the media; I’m project advisor on a research project; I manage the website and social media for one charity; and more. I hold positions within six charities and one alliance, and work with many other charities and organisations on a one-off of intermittent basis. I’ve got many plans for the future too and I have a successful blog. In the 2016 New Years Honours I was awarded an MBE for services to young people with disabilities, aged only 22. What an achievement; it still doesn’t feel real. I was awarded the MBE by Prince Charles at Buckingham Palace in June 2016. My duration of work may not be long, but the impact of my work is what led to my MBE. I keep very busy, working every day and doing all I can to make a difference. My voice is the one thing I can use completely independent of anyone; so I use my voice to be a voice for others like me. A voice for those who cannot speak for themselves, or who do not have the opportunity to speak up on a national or even international scale. I use my abilities and experiences constructively to benefit others.

This is all despite a life-limiting, degenerative condition. Despite being hooked up to intravenous drips at least 21 hours a day, despite having a drainage tube and two stoma bags. Despite surgeries, twelve battles with sepsis, despite hospital stays, despite fighting for my life. Despite knowing that my time on earth will be far shorter than it should. Despite knowing that I’ve outlived the prognosis I was given.

Lucy Watts MBE

In the process of doing this work, I’ve gained a purpose, a new life and its led me to truly live. I am no longer merely existing, I now have a joyful, exciting, jam-packed life. I still have a degenerative and life-limiting condition, I’m continuously getting worse and losing abilities, my condition becomes more fragile and harder to manage, I require more intervention and I have to deal with the almost continuous cycle of grief with each new problem, complication and deterioration, but I have a life that is worth living. A life I’m proud of. Had I not been poorly, I’d have recently qualified as a junior doctor, which has been a cruel blow, but I am regularly told that I’ve likely done more with my life and made a greater contribution to society as a patient leader and ambassador than I ever would have as a doctor. I like to think that is true.

This article was originally published 26.09.2017 as part of HuffPost UK’s weekly Life Less Ordinary blog series. It has been reblogged here with permission from Lucy Watts MBE.

Lucy is Lead Co-Researcher in Living Life to the Fullest. Read more about her here and follow Lucy on Twitter.


Co-production in Action…

Yesterday we held our first ever Research Management Team meeting at Manchester Metropolitan University. It was wonderful to see such an expansive team – our community research and impact partners from disability, arts and digital organisations, and academics, parents, supporters and allies – in the same room for the first time, rather than through computers screens, Skype windows or email addresses. We began the meeting by recognising the important collaborative work that has already taken place to get to the point of a funding award. Interestingly, throughout this development period of working up ideas and collectively putting the bid together, our core interests have stayed strong and true to original ideas (see our short film, Living life to the Fullest (2015) here).

In short, we are committed to working in collaboration with disabled young people. We centre the arts as the means to tell different stories of disability, whereby it isn’t a problem to be solved, or a tragedy. Instead, we want Living Life to the Fullest to be a space where new, affirmative understandings of disability emerge, that for many it can be a valued part the self, identity, family, community and civil society. However, we seek to do this in conversation with young people and families, in ways that do not gloss over the realities of their everyday lives and experiences of discrimination, exclusion, disablism and hardship. Experiences ever-present in these precarious times of austerity and instability. Ultimately, the focus of Living Life to the Fullest is on the lives, hopes, desires and contributions of disabled young people with life-limiting and life-threatening impairments (LL/LTIs) (sic).


This was followed by introductory presentations from our three primary partner organisations: Good Things FoundationDMD Pathfinders, and Purple Patch Arts.

We also had some useful discussion that documented what individual members of the Research Management Team will bring to the project, past their time and expert knowledge. For example, things like resources, contacts, networks, links, social media channels, access/relationships to/with multiple communities, a range of experience/s and skills, media savvy and relationships to broadcasters, and self/advocacy. We also spent time considering our existing employment, community and activist networks and who we might want or need to know about the project: are there any organisations not in the room that should or could be? Who else might we connect with and why? This was helpful towards thinking about how the Research Management Team will develop throughout the research process, dependent upon the needs of the project as it goes forward.

Later, we reflected upon the proposed arts methods we will use in the project, led by the wonderful Purple Patch Arts, and also began conversations about methods of recruitment – ways to present the research to young people and families; key spaces of access; and how we can articulate the research to a range of publics. We questioned the best ways to approach and recruit parents and/or young people to participate in the project, what different emphases and expectations there might be, and what it might be important to think about or be aware of when recruiting and interviewing. You can read about our first steps with recruiting young co-researchers and participants, and get involved if you want to here.

We ended with a short conversation about the impact of (changing) policy in the lives of young disabled people and across our organisations: which policies touch, or have impact, in our lives? What kinds of impact might our research make to current or future policy? And, more plainly, why does policy matter? Of course policy does matter, and it is a key aim of Living Life to the Fullest to broadly influence policy and engage with policy makers, but it was a helpful first step to draw together a list of relevant policies to inform the writing of a policy review.

In short, the meeting embodied co-production in action: as a team we are stronger together to carry out high quality, relevant and meaningful research with young disabled people and their families and allies. Community research partner Jon Hastie, who along with Mark Chapman founded DMD Pathfinders, a user-led organisation that promotes choice, control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK said of the meeting, “The research meeting was a fantastic opportunity to meet the other members of the research team and share our ambitions for the project. There was a real sense of enthusiasm and passion for empowering young people to talk about their lives in ways that are meaningful to them. There was a remarkably rich and diverse mix of lived and academic experience in the room which will be key to realising the project directives. We at DMD Pathfinders were delighted to contribute our own perspectives and are very excited about the opportunity to coproduce this research.”

If you enjoyed this short blog, and would like to keep up to date with the project as it happens, follow this blog! If you have any questions, don’t hesitate to get in touch here.

ESRC Funding!

We are thrilled to announce that Living Life to the Fullest (ES/P001041/1) has been awarded funding by the Economic and Social Science Research Council (ESRC)!

Getting the funding has been a long journey, and we are very grateful to the ESRC and our reviewers for taking the time to see such value in our project.

In short, it simply wouldn’t have been possible without our brilliant community research partners (and kind others – colleagues, reviewers, friends) who supported the funding bid  in various ways. Thank you so, so much for your time, commitment and effort. The strength of our project, and a key reason in why it has been funded in what remains a desperately difficult climate, is because of its commitment to co-production: working together in collaboration for real and meaningful social change that makes a difference in the lives of disabled young people and their families.

We would also like to thank the University of Sheffield and Manchester Metropolitan University for their support.

The project will begin in  April 2017 and will run until 2020. If you want to learn more, please see our film! We are so excited to begin and look forward to getting going! Keep up to date with our research via this blog (click the ‘Follow’ button), we will be updating it regularly.

If you have any questions, don’t hesitate to get in touch:


ESRC logo


Rebooting humanity through disability

This blog article draws upon some recent research and writing with my colleagues Rebecca Lawthom and Katherine Runswick Cole (Manchester Metropolitan University) and Kirsty Liddiard (University of Sheffield, like myself) . Our work centres around a key question; what does it mean to be human in the 21st Century and in what ways does disability enhance these meanings? In posing this question we are drawn to two realisations. First, we recognise that the human being is what we might term an entangled expansive entity (bound up in tight connections of nature, technology, culture). When we think of our friends we now might point to our social media networks and when we consider the human body we are certain to note that we are plugged in to a whole host of relationships with the internet, computers and machines. While it is important to recognise the ever-morphing practices that impinge upon humanity we wonder if disability might shed further light on these entangled and expansive shifts and changes. Historically disabled people have been considered to be less than human by their fellow (non-disabled) humans. Just as people of colour and queer people have been marginalised, so disabled people have been institutionalised, segregated and on many occasions threatened with eugenics and medical interventions that seek to wipe them out. Fortunately, the disabled people’s movement that now enjoys global presence – reaching out across rich and poor nations – demands us not only to include disabled people as members of the human race but, and this is what we find particularly exciting, asks us to think again about what it means to be a full, paid up member of humanity.

Human head

The second realisation is that we are living in a time when the human being is under threat. We know that the gap between the rich and the poor is wider now than it has ever been. In June 2014, The UN High Commissioner for Refugees (UNHCR) reported that the number of people displaced by bloody conflict and persecution had exceeded 50 million for the first time since the post-World War II era. Meanwhile, as more and more governments execute austerity politics, many human beings find themselves at risk. Yet, the dominant message from politicians is that in order to survive humans need to start taking responsibilities for their own lives. It is not the State that will support you but your hard work, your entrepreneurial verve and your self-sufficiency. We know though that the reality for many of us – indeed, all of us – is that we cannot live alone. The mythical notion that being a valued human being equates with displaying great individual displays of autonomy and independence needs to be exposed in these dangerous times of global conflict, welfare cuts, precarious labour conditions and the fragmentation of our communities. And this is where disability can help us refresh the values that we attach to humanity.


Disabled activists, artists and researchers have long argued for a rethinking of those qualities that make us all human beings. People with impairments – whether they be sensory, physical or cognitive – have always demand imaginative ways of being human. Wheelchair users fuse human bodies with machinery in order to move. Disabled people have always been cyborgs. People with intellectual disabilities have helped to promote extended support networks, spanning communities, bringing individual human beings into more collective human gatherings. Disabled activists have pushed governments to embrace anti-disciminatory legislation that forces employers to (at the very least) acknowledge employing disabled people. And when employment for disabled people works it does so not only because the skills of disabled people have been allowed to shine but because forms of human support have been put in place to make workplaces inclusive, enabling and accessible. We might hope, then, that the 21st Century becomes a DisHuman century: a time when disability is adopted as the category for thinking again about what it means to be human. Hopefully, the humanity valued in this period of history will be one that emphasises mutual support, interdependence and an enabling blending of bodies, technology and culture.

Dan Goodley, School of Education, University of Sheffield


Welcome to our website! This is a website for the Living Life to the Fullest project, a partnership research project of the University of Sheffield and Manchester Metropolitan University. Working in partnership with children and young people with ‘life-limiting’ or ‘life-threatening’ impairments (hereby LL/LTIs) and their allies, the research aims to explore the lives, hopes, desires and contributions of disabled children and young people. Click here to read more about the research. Please take the time to have a look around our site and learn about the project. If you have any questions, or feel you can contribute to the project, don’t hesitate to get in touch.

University of Sheffield logo

Manchester Metropolitan University Logo