What if we viewed lived experience as an asset? As an asset of professional, economic,…
On Friday 21st September 2018 I received a prestigious accolade: I was awarded an Honorary Degree of Master of the University from the Open University, for commitment to public services. What an incredible thing to receive, to be recognised in such a way, to be deemed worthy and to receive it from an institution I greatly respect and admire for its accessibility, openness and commitment to both making higher education accessible to people from all walks of life – especially disabled people – as well as for its commitment to furthering knowledge on a vast range of topics, both of which it excels at. I can’t quite describe how I feel, it’s utter elation mixed in with the feeling of disbelief that ‘little old me’ has received and is worthy of such an accolade. My brain can’t quite comprehend it, I keep thinking that any minute I’ll wake up and find it was a dream, and have that feeling of wanting to ask someone to pinch me to double check it’s really happened. We had the most amazing day. I shared it with my mum, Kate, my Grandmother, Dorothy, my former palliative care nurse Bev Barclay MBE and Dr Maddie Blackburn and husband Paul also came. We were up bright and early, arriving at the Barbican at 10.30, going in and getting my medication and makeup done and preparing. At 11.45 the comms team came and filmed me. At 12.15 we did a rehearsal of the ceremony in brief, so I knew where to go and what to do at each point. Then we went back and had a chill out before heading for lunch. Mum and I headed to the special lunch with the OU deans, department leads and staff, and fellow honorary graduates, and Bev and Grandma had lunch with the graduates and guests. Then we had photos done which was great, before heading into our little area to get me ready and set for the ceremony itself which started at 15.00. In the ceremony, a video was played in the hall whilst I waited in the wings just outside the hall. About two thirds of the way through the video Molly and I went into the hall and sat in the stage lift. Then the OU deans and staff entered the stage and I was raised up in the stage lift, and as Dr Steve Hutchinson came up onto the stage, I exited the lift and moved into my place. Then the ceremony was officially opened with an address. My honorary masters was the first presentation. So my name was read out, then Dr Steve Hutchinson read out my citation, before Professor Josie Fraser, Executive Dean, presented me my honorary degree, and then I moved forwards and gave my acceptance speech, finishing to a round of applause. Once this was over, the academic degrees started. They were done in two halves, with Dame Katherine Grainger’s honorary doctorate presentation in the middle. She gave a wonderful acceptance speech, very inspiring. Then the other half of the graduates received their degrees before Professor Fraser spoke, giving an entertaining address about the day, the hard work of the graduates, we had some interactive questions and lots of laugher. Then the ceremony was over. It was amazing. I am so lucky. Some of the graduates as they walked along the stage, after receiving their degree from Prof Fraser, shook my hand on their way across the stage (some also giving Molly a pat too) which was moving. My achievements were truly valued and appreciated by all and that meant an awful lot to me. Molly was a real star, taking it all in her stride, impeccably behaved, loved meeting everyone and all the applause, and did me and Dog A.I.D. proud. My little star. At the bottom of this blog are the citation and my acceptance speech, so do scroll down to read those if you’re interested.
With Grandma Dorothy, Bev Barclay MBE, Mum & Molly
With Professor Josie Fraser & Dr Steve Hutchinson
I’ve been recognised for my work, which spans many different topics and sectors, due to my varied interests and experiences and the ability to contribute to the knowledge, understanding, development, improvement, awareness and facilitation of a range of different things. I like having variation in what I do, I like to be challenged and to learn but also to contribute, enlighten, support and make an impact. From healthcare to sexuality to palliative care to disability rights to social care to research to patient involvement to digital legacy. I’ve got a lot of hats, roles, projects and interests that I immerse myself in. I’m someone who finds down time boring and relaxing tortuous and who doesn’t like to sit still (figuratively, as I am forced to sit still owing to my illness) so I deliberately keep myself very busy and my work varied. In fact, when I have nothing to do I find myself struggling more to cope with my illness, especially the severe intractable pain I live with despite high doses of opiate based painkillers. I need to keep busy, it helps me to cope. My palliative care nurses have often said that I probably wouldn’t be alive today without my work, as I’d have given up mentally and sure as anything if I did, my body would’ve given up too. So I consider my work part of my condition management.
I am proud of myself (something I find very hard), and still a little shocked that I have received this honorary masters. Friday was the most incredible day, from start to finish, it is by far one of the best days of my life. I’m so lucky that I have this life, can do what I do and achieve what I achieve, and to be recognised for it. It takes a lot of hard work, drive, determination, perseverance, sheer bloody mindedness, and hours and hours and hours of unseen, unheard, unrecognised, thankless work. I work every day for hours at a time. I do it because I’m passionate about it, I enjoy it, it gives me purpose and my life meaning and it makes a difference for others. “If you do what you love you’ll never work a day in your life.” So lovely as awards are, they aren’t what I seek. You could take away my MBE, my honorary degree, my other awards, and all the recognition and exposure I’ve received, and I can hand-on-heart say that I’d be exactly the same person, doing exactly the same things, to exactly the same extent, putting just as much work in, and would be as fulfilled as I am today. Awards, whilst nice, aren’t important to me. The only recognition I seek is the recognition that, when I come to the end of my life, I will know within myself that my life meant something and it was worth living. That’s the only recognition I seek. We all should be altruistic, and do things for others not for our own gain, but for the benefit of others. If you do things chasing awards you’ve missed the point and won’t succeed. You need to always do things expecting no thanks, no recognition, no attention, but because it benefits someone else. Then you’ve succeeded and will often be recognised. Life is about giving, not just receiving.
I am truly honoured to have received this honorary masters but I accept it not just for myself, but for all the people and organisations who’ve played their part in my life, believed in me, kept me alive, given me quality of life, supported me and enabled me to achieve all that I have achieved and had an impact on me and my life in whatever way. I recognise that whilst it is my hard work, dedication, perseverance and achievements that are being recognised, that behind me is an endless list of people who’ve played a part – some big, some small, some monumental – in my life and thus my success. Particular thanks, although I really must stress that I am grateful to and appreciate you all, are to my mum, without whom none of this would be possible – she’s kept me alive all these years, fought for me, given up her life to care for and support me, and always been there, as well as for everything she does to enable me to do my work; to my family, and my friends, for their support and belief; to my former palliative care nurse and friend Bev Barclay MBE for both saving my life and being the catalyst that started me on this path of advocacy, speaking, writing, activism and so on, and for always seeing my potential where others saw problems and barriers; to Dr Maddie Blackburn for her support, guidance, mentoring, encouragement and friendship, and who has always helped to ensure I can reach to reach my full potential – and to Maddie and Dr Sarah Earle who both nominated me for this honorary degree; to everyone at Together for Short Lives for giving me my first opportunity and their continued support and opportunities; to Liz Humphries who encouraged me to start my blog, has filmed me a few times for different projects and has fostered my interest in journalism and media; to my home tutors from Integrated Support Services who educated me at home from age 14 to the end of my GCSEs age 16 but who were huge supporters who believed in me, saw my potential, encouraged me, lifted me up and played such a big role in my life when my life had all but ground to a halt, facilitating the one aspect of my ‘old’ life I could still do – my education, which I owe to Mary, Jenny, Liz and Michelle; to all the other charities, organisations and individuals I’ve worked with; and finally, to The J’s Hospice for their support, without which I wouldn’t be here today let alone achieved all I’ve achieved, from the clinical nurse specialists including Bev who formerly worked there and was my first J’s nurse, to the carers, especially those who cared for me at home twice a week from 2011-2015 and who brought laughter, happiness, friendship into our lives and provided outstanding care, to the wellbeing team including social worker, counsellors, complementary therapists and chaplains, to the volunteer drivers including Stephen who drove me to most of my appointments and some days out whilst Mum was unwell and unable to drive, and all the other staff, and the volunteers and supporters who help make The J’s work possible and play their part in enabling it to achieve all that it does and also to Denise Whiffin whose vision for dedicated young adult palliative care services for Essex and beyond led to her founding of The J’s Hospice and thus founding and enabling everything the Hospice is, does and achieves, in memory of her son Jonathan. The phrase “it takes a village” sums it up perfectly. No one in the world is completely independent, we’re all interdependent, and we must make sure we appreciate all the individuals who impact upon our lives and make what we do and who we are possible.
With Bev Barclay MBE & Dr Maddie Blackburn
With Bev Barclay MBE, Dr Steve Hutchinson & Dr Maddie Blackburn
I want also to say thank you to the Open University for recognising me with this honorary degree, and to all the people who helped make the ceremony possible and memorable, including Professor Josie Fraser, Executive Dean who presented the degrees at the ceremony and Dr Steve Hutchinson who gave my citation and for our very enjoyable conversation over lunch, to all the other fantastic staff and support, to Nikki Deegan for all her help with the organisation and making sure all my needs were factored into the day, to Samantha who was in charge of making sure the ceremony went as planned, to Cheryl from the OU and George from the Barbican who were with us all day making sure we were looked after, supported and everything was managed well, and everyone else who made the day possible. I am grateful to you all.
So, here is the citation, and under that, my acceptance speech.
Executive Dean, colleagues, graduates, guests:
Lucy Watts is a campaigner and activist who draws on her own experiences of disability to improve the lives of other people grappling with severe illness.
Lucy has suffered with different health problems since birth, and became dependent on a wheelchair at the age of fourteen. The exact nature of Lucy’s condition is uncertain – it is thought that she suffers from a rare neuromuscular disease or genetic disorder – but the impact on her life is acutely clear.
Reliant on intravenous nutrition, near-constant intravenous drips, a wheelchair and hoist for mobility, and full-time intensive care nurses, Lucy’s life is challenging and complex in so many ways. Since her mother was diagnosed with a brain tumour several years ago, it has become even more so. Yet she is determined not only to experience all the pleasures and joys that life has to offer, but also to bring about lasting and positive change for others.
Her career as an activist arose from this determination to make a difference. With the support of J’s Hospice in Essex, who continue to provide Lucy’s care, she began to publicly discuss the importance of palliative care for young adults, whose needs are so different from the elderly people these services are generally designed for. As a result, Lucy went to the Houses of Parliament on behalf of Together for Short Lives to explain directly to politicians, policy makers and healthcare professionals how important these services are.
Since then, she has become an accomplished and eloquent spokesperson for the needs and rights of the ill and disabled, using her experience and expertise to campaign on a range of causes. She has appeared on many different media platforms discussing health care reforms, special educational needs, disability services and palliative care, and is especially committed to improving the connections between children’s and adult services. She has advised policy makers at the Department of Health and the National Institute for Clinical Excellence on a range of issues.
Lucy is an Ambassador for Together for Short Lives, and for Dreams Come True, which grants wishes to children and young people living with serious medical conditions. She is also the first Youth Ambassador appointed by the International Children’s Palliative Care Networks. Having trained her own assistance dog, Molly, Lucy is also a strong supporter of the Assistance in Disability charity Dog Aid. She has worked with a huge range of charities focused on disability, health and social care and has been awarded the MBE for services to young people with disabilities.
Lucy’s support and advice have been hugely beneficial to the Open University Sexuality Alliance, which has produced guidance and standards for those working with young people with life-limiting illnesses and conditions. These help healthcare professionals discuss issues around sex, relationships and intimacy appropriately, with care and respect for individual dignity and privacy. Lucy writes and speaks on this issue with the passion and honesty which characterise all her work. We are honoured to celebrate the life and work of this truly inspirational and extraordinary young woman.
Executive Dean, by the authority of the Senate, I present to you for the honorary degree of Master of the University, Lucy Watts.
My Acceptance Speech:
Thank you. I am delighted to be here today receiving such a distinction in the form of this honorary degree. I would like to take this opportunity to congratulate all graduates here today, whom I know have worked incredibly hard to achieve their degrees, and also to fellow honorary recipients. Today is our opportunity to celebrate achievement, perseverance, dedication, commitment and of course hard work. I would like to extend my gratitude to the Open University for this honour and for their appreciation of my work and achievements, albeit not in the same way as an academic degree, for my commitment to public services. Like many OU students, I overcome a lot of barriers in order to achieve, in my personal life in terms of the day to day impact of my condition and its management, but also in my social and professional life in terms of the barriers such as attitudes and accessibility faced by disabled people like me. Disabled people often feel like second class citizens, but the OU stands out in its support of disabled students and its achievements speak for itself. The OU is an institution known for its accessibility and openness, for people of all walks of life. I will look forward to a continued relationship with the university. One of my roles is part of an Open University research group, the OU Sexuality Alliance, so I have experience of how the university values true engagement, innovation and support, and the furthering of knowledge on a range of different topics. I do hope one day to study for an academic degree with the Open University. I thank once again the OU for their support and recognition and I extend my congratulations and say well done to everyone here today for achieving your degrees. It is a privilege to be here alongside you.
With Dame Katherine Grainger
Dinner afterwards with Maddie, Paul, Bev, Mum & Grandma