Exploring the world side by side

By Lucy Watts MBE and Kirsty Liddiard 

Lucy Watts MBE

Lucy Watts MBE and Molly

In this blog post, we share a revised/shortened version of  a conference paper given at a symposium hosted by the Institute for the Study of the Human (iHuman), Animal-Machine-Human: The place of disability, held on 10th October 2017 at the University of Sheffield. We originally co-wrote the paper through conversation. If you would like a copy of the full paper, please email k.liddiard@sheffield.ac.uk

Introducing Lucy and Molly…

We’d like to introduce you to Molly. Molly is a 5-year-old Dog A.I.D accredited assistance dog. Molly is also an Internet star, blogger (see her Facebook page, Molly, Dog with a Blog), friend and comrade to Lucy, and part-time Cocker Spaniel. In 2016, she was awarded an animal version of an MBE, an Order of Merit awarded medal that is ‘awarded to recognise animals that have shown outstanding acts of devotion and that symbolise the special relationship between animals and humans’ (PDSA 2016).

Lucy is a 24-year-old woman: an activist, campaigner, writer, and charity worker. In 2016, Lucy was awarded an MBE for her services to young disabled people. Lucy is also Lead Co-Researcher in our ESRC project, Living Life to the Fullest which, through the arts, is exploring the lives, hopes, desires and contributions of children and young people who live with impairments that are categorised as ‘life-limiting’ or ‘life-threatening’ (LL/LTI).

Day-to-day, Molly carries out a range of practical tasks with and for Lucy. Things like ‘picking up dropped items, undressing her, grabbing the post, loading and unloading the washing machine, pressing lift buttons, carrying items, and paying cashiers’ (Watts, 2017) – you name it and Molly and Lucy collaborate to make it happen. Past these seemingly mundane tasks, however, Molly also performs medical alerts. Through smell, Molly warns Lucy of body temperature changes, which for Lucy are an indication of life-threatening infections. Incredibly, Lucy says Molly will alert her 3-4 hours before her temperature spikes, by ‘incessantly licking my hands and arms’ (Watts, 2017). Molly also alerts Lucy when her blood pressure is dropping. In Lucy’s words, [Molly] ‘will do this by sitting or standing in my eye line, and staring at me, trying to make eye contact, or she may put her paws up on the arm of my wheelchair and stare straight into my eyes’ (Watts, 2017) – these are critical efforts that enable Lucy’s survival.

Outside of these practical and life-giving labours, for which both Molly and Lucy have been relentlessly trained – together, side-by-side: a partnership so carefully crafted – our focus in this post is to think about the intimacies that disability makes possible between animals and humans. We think that disability can bring animals and humans together into rare and intimate interdependencies not shared by many others. Through taking a look at Molly and Lucy’s world, and their relationships with and to disability, we suggest that their rare and unique bond shapes Lucy’s experiences of care and caring, social inclusion and access to the outside world.

 Rethinking Intimacy

In his book, The Two-in-One: Walking with Smokie, Walking with Blindness (1999: 9; you can read the introduction for free here) author Rod Michalko says of his relationship with his guide dog Smokie: ‘We are “person” and “dog” sharing a life together. We are human and animal living in the world and moving through it together’. Like Michalko and Smokie (1999), Lucy and Molly’s relationship is more than pragmatics and practicality (although we don’t deny that these are very important; see above). Instead, the two share a deep trust and bond that has sustained Lucy through the tumultuousness of her own life-limiting illness and uncertainty towards the future:

‘There are a few things I always think about when it comes to Molly and her love. One of these is that, to Molly, I am not disabled or sick, I am just ‘mum’. She loves me regardless. She loves me regardless of what mood I am in, how awful I look, and how much I lean on her for support – love is truly unconditional. It’s a powerful kind of love. And the thing is, they love you for who you are. Not disabled vs. non-disabled, not sick vs. healthy, not tall vs. short – they won’t care about all of that. They love you for who you are, all of you, without judgement, without exclusion. Molly sees past what a person would see when they look at me, and sees who I really am. That is so powerful’ (Watts, 2017).

‘…asking for help from a human carer I am forever apologising for what I need help with – to Molly, helping is a fun and rewarding game and she’s there in an instant (she never truly switches off), tail wagging, smile on her face and to Molly, the more help I need, the better the game! So I feel less of a burden asking help from my ever-faithful Molly than I do people’ (Watts, 2017).

While Lucy and Molly’s relationship is largely characterised by labour – e.g. they work together – Lucy’s latter account above reveals their relationship as a form of care very different to that which she experiences from humans. Lucy and Molly are able to understand and respond to each other’s needs in ways that alleviates Lucy from the emotional labours that can be part of receiving care as a disabled person – the being eternally grateful, the apologising, and the worrying about others, especially if our carer is also someone we love (e.g. a parent or family member).

‘Molly and I are enjoying exploring the world side by side’: Considering Public Space

 To move from the private to the public, then, Rod Michalko highlights the everyday reactions of (typically non-disabled) others as he and Smokie move through the social world together. While Michalko liked to play with inquirers – “Man on the street: is that one of those blind dogs?” Michalko: “Jeez, I hope not” – he identifies such curiosity as others trying to understand their identities as blind man and guide dog in a human sighted world.

Similarly, if we look to Lucy’s experiences, we can see that Molly’s presence mediates Lucy’s encounters with others in public – together they become a social subject. We don’t say this to position Lucy as less-than-human, of course, but to recognise the ways in which Lucy and Molly come together in public and how this togetherness is recognised by others – enabling particular kinds of social interactions, as Lucy stresses:

‘Prior to Molly, people were too scared to talk to me in fear of saying the wrong thing. I felt invisible, because people didn’t acknowledge my existence, except from staring at me from a distance. With Molly, however, people were coming up to me and instigating conversation. They’d ask me about my beautiful dog, and I quickly gained in confidence. Suddenly I was being stopped all the time by people; and I, too, found the confidence to strike up conversations with others. From the extremely shy girl I was, I was blossoming into someone who felt able to talk to others, to hold conversations with people I’d never met. I felt a part of society again, and that was all down to Molly’ (Watts, 2017).

While we must always trouble the idea of disabled people being humanised in the eyes of (non-disabled) others by animals, what is striking in Lucy’s account is the way Molly’s very presence enables a visibility and social inclusion that is deeply important to her. Molly mitigates much of the discrimination typically encountered by disabled people in public spaces – stuff like hostility, stares, rejection, and patronising attitudes’ that can make disabled people feel worthless, hassled, ignored or scared. Molly makes very meaningful the little time Lucy gets out in her local community due to illness. As Lucy said, ‘the four walls of my bedroom had become my prison; but my dog had set me free’.

We want to end this short piece by sharing that, following discussion with our Co-Researcher Collective of young disabled people, we have decided to ask young disabled people about their relationships with their assistance animals (or other animals) through the project. We are left wondering how the intimacies between disabled people and (assistance) animals might be especially valuable for children and young people with life-limiting and/or life-threatening impairments (LL/LTI), where there may be increasing needs for care, forms of support, and feeling safe and included. Fittingly, we end with Lucy’s words:

I owe her [Molly] an awful lot. My happiness, my purpose, my positivity, my zest for life, my fulfilment, my work, my life; I’d go so far as saying my existence. She’s changed my life beyond all recognition, but she’s saved it too – in more ways than one (Watts, 2017).


  • Liddiard, K (2018) The Intimate Lives of Disabled People.  Abingdon: Routledge
  • Michalko, R. (1999) The Two in One: Walking with Smokie, Walking with Blindness. Philadelphia: Temple University Press
  • Watts, L. (2017) A blog about life, illness and overcoming obstacles. Available from: http://www.lucy-watts.co.uk [Accessed 1/10/2017]




Living Life to the Fullest on the Telly!

We are proud to say that the first Arts Retreat for young people, held as part of our project, Living Life to the Fullest, was covered by BBC Breakfast and televised on Friday 27th October. To watch the full report, take a look here.


BBC Breakfast logo


Day Two, of course, was equally action-packed. We started off the day making masks to think about what we want from our futures – careers, families, travel, and the rest. Excitingly, we had BBC Breakfast come to film and report on #ArtsRetreat2017 which brought no end of fun. Everyone was interviewed by Graham Satchell, the reporter, and filmed by the wonderful cameraman (who let us play with his camera).


You can see the report in full here. We are really pleased with the sensitive and thoughtful tone – please feel free to share the link.






#ArtsRetreat2017 Day One…

The first day of our two-day Arts Retreat led by Purple Patch Arts has been action-packed. We are working with a brilliant group of young disabled people who are throwing themselves into the action without a second thought. So far, we’ve talked about what experiences and feelings we both hide and put on display through making lava lamps; we’ve made postcards of our happiest times and places; we’ve considered our heroes and what kinds of qualities are important through a wall of words; we’ve thought about what’s important in our lives – our relationships, aspirations for the future and what we enjoy – through making sand-mugs; and we’ve explored what we think of ourselves, but also the words and assumptions that get imposed upon us, through body-mapping.

This latter activity was really interesting because it revealed that it’s far easier to focus on the things we don’t like about ourselves than it is the good. We know that this isn’t just the case for young disabled people, but a whole host of groups: it’s also endemic in a culture that proffers perfection and success as the only valuable ways to live. How might we change this? How might we celebrate each other and ourselves, and in ways that run counter to typical discourses of disability that only denote deficit, lack and burden?


Most importantly, we have been documenting all of this with our Polaroid cameras (which are utterly awesome).

It’s been lovely to spend time with families, too. The Retreat being residential means that there’s lots of time to have dinner together, play board games and chat into the evenings. Not surprisingly, families have similar stories about access, resources, services and provision, which reveal just how much fighting for what you and your family need has become the norm for many.


Tomorrow we head into Day 2, so this entry is to be continued… In the meantime, check out our hashtag #ArtsRetreat2017 and follow @iHumanSheff.



Last few spaces… #ArtsRetreat

Are you, or do you know, a young person aged 13+ living with a life-limiting or life-threatening condition (LL/LTC)?

If so, the Living Life to the Fullest Project (livinglifetothefullest.org) is seeking young disabled people (13+) to attend a residential Arts Retreat at Treloar’s School and College this October half term. We have just a few spaces left that we really want to fill.

The Living Life to the Fullest project is a research project which seeks to forge new understandings of the lives, hopes, desires and contributions of young people with ‘life-limiting’ or ‘life-threatening’ impairments.

The Arts Retreat will encompass a range of art-making techniques, led by the brilliant Purple Patch Arts, and is taking place on 24th and 25th of October 2017 (with full board available from 23rd – 26th). Attendance at the Arts Retreat is fully funded by the project for the young person and up to 3 family members, who can accompany them if required.

If you are interested or have any questions please email k.liddiard@sheffield.ac.uk asap!



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.