I’m Lucy, I’m 22 years old, and I have a genetic disorder called Ehlers-Danlos Syndrome with life-limiting (life-shortening) complications and it has also left me disabled (wheelchair bound) since I was 14. My quality of life is restricted, hooked up to intravenous drips almost 24 hours a day and I am mostly bed bound, however I have a specialist wheelchair to enable me to spend as much time out of bed as I can, which most days isn't a lot but some days can be all day such as for an event in London. Read more about my condition here.
I am a writer, speaker, charity Ambassador and Trustee, blogger, patient leader and spokesperson and I have appeared in filmed and recorded work including on TV and radio such as BBC Radio 4's The Listening Project and a BBC Three documentary on digital legacies, as well as in videos that have been played at conferences across the UK and indeed all over the world, from Buenos Aires to Asia. My charity work is my life, allowing me to give back and contribute to society, make a difference and use my knowledge and experiences constructively to benefit others. For my charity work, I was appointed a I will explain my charity work in more detail below.
At 22 I have achieved a lot, however I have hobbies, interests, hopes, dreams and goals just like any other young person my age - I just have enormous obstacles to overcome to partake in my hobbies and to realise my dreams. I do not let my conditions or disability hold me back; they limit my ability to do many things and lead a 'normal' life, however I work with what I can do and push the boundaries where possible. It's not often I am defeated, as I am realistic about what I can do and do that to the best of my ability. Never having unrealistic goals to start with means I rarely face disappointment or feel defeated, and means I have a much higher chance of succeeding and doing well. I do push and challenge myself, but I stay grounded about what is realistically and physically possible given my conditions and disabilities.
I am a 'horsey' girl at heart, riding for most of my life until I became ill and disabled aged 14 (after a childhood full of problems that were never investigated nor connected). It truly was my life, I spent more time at the stables than I did at home and probably saw more of my riding teacher than I did my own mum! I just love horses, they're such majestic, sensitive and powerful creatures and are so intuitive, and I loved being around them just as much as I enjoyed riding itself. I never had a horse of my own, instead loaning other peoples horses; I was chief horse-looker-after when people went on holiday, and rode such a variety of horses with vastly different temperaments, all of whom needed a different approach and riding style, and I feel this benefitted me greatly as a rider. I would also be given "projects" - that is horses who needed bringing on before my riding reacher Re would then sell them on. It was the closest I got to having my own horse, so I relished the times I had a project horse to look after and bring on. I still visit the stables I used to ride at, which is just round the corner from my home. I do hope one day to try out carriage driving, it has always been a dream of mine and is even more poignant now because I know I will never be able to get back on a horse again. It'd be a dream of mine to have my own horse and carriage. When I win the lottery.......
I am also a dog lover; my assistance dog-in-training Molly is my world. I am training Molly to become my assistance dog with the help of a charity called Dog A.I.D. (Assistance in Disability) who train pet dogs to become assistance dogs. Once Molly has passed all three stages of the training, she will quality and be allowed access rights and be able to accompany me everywhere and to assist me fully, and will be an AD(UK) and ADI-accredited assistance dog. In addition to training Molly as my assistance dog, we also enjoy agility classes, hoping to compete one day, and go to obedience classes too. Molly and I love to train and to learn, we love to have fun and to simply spend time together, and agility is a great way to have a great time, use our exceptional bond in an extremely fun way, to learn something new and to challenge ourselves. We do hope to be able to compete in agility in the future, something I've wanted to do all my life (however my first dog, Ben, a rescue lurcher whom I got when I finally convinced my parents to allow me to have a dog when I was twelve, was not into tricks or training or agility, so I was never able to do it as an able-bodied person) and I am determined that being in a wheelchair will
Other interests of mine include photography, graphic design, making and editing videos, writing, dog training/canine psychology, crafting and I love to learn (wikipedia and google I couldn't manage without). I, as above, love horses and dogs, but I also love butterflies, dragonflies and zebras (the latter being a sort-of mascot for my condition, EDS, and rare diseases generally). I love nature, I'm an outdoors person at heart, and prior to being ill spent very little time indoors, so it was a huge adjustment when I became ill from being outdoors most of the time to suddenly being housebound. Nature and animals, especially Molly (of course), horses, dogs, butterflies, flowers and landscapes are my favourite photography subjects. Sadly I struggle to do photography now, I don't have the strength to hold the camera due to increasing muscle weakness, even holding my arms up to operate a camera on a tripod or mounting device is extremely difficult, nor do I have the steadiness to take photos due to tremors.
I do hope to write and publish my own autobiography, I'd also love to do paid written work, and another dream of mine is to write stories for children based on Molly and I (with myself at the age of about 8, so the children can relate to the fictional version of me). In the books I'd be talking about and introducing children to a variety of different subjects which they may fear or not understand very well, especially things like doctors, hospitals and operations and other medical subjects, doing exams, and all sorts of things like that, by having morals to the story and educating the child, dispersing any fears they may have through explaining everything to them in their own words and showing a positive story surrounding that topic through putting fictional Lucy in those situations and guiding them through the process through her eyes, whilst also introducing children to the concept of disability with the central character of the story being in a wheelchair and helped by her assistance dog. It's also be nice to introduce the 'rules' surrounding assistance dogs to children, such as not stroking them without the owners permission, never feeding them and never distracting them when they are working, by explaining why.
Another dream of mine is to do much more television work, especially presenting work. I thoroughly enjoyed making the documentary and have other production companies interested, one of whom wants me to present the programme, however they are not commissioned so no guarantees anything will result from them. I'd really love a career in television, especially on anything health or medical related, sports, especially equestrianism and canine sports and dog shows, such as Crufts (especially since Molly and I won the Friends for Life competition at Crufts 2014 by public vote, so we've been to the show, know the atmosphere and it's something I watch and read about every year), possibly do entertainment/talk shows and I'd love to anything factual as I absolutely love documentaries and non-fiction programmes and have a thirst for knowledge. I'd love learning so would have no trouble doing a programme on a certain topic as I'd be able to immerse myself in learning all about the topic and then conveying all I have learnt and talking accurately on the subject in the programme.
Could you help me out with any of my dreams/goals? Please email me email@example.com
My charity work
My charity work is my way of giving back, providing a positive focus away from my conditions, allowing me to contribute to society and to also use my knowledge and experiences constructively to benefit others and make a difference. What motivates me is the drive to help others, to improve their lives, allow them to live full lives and experience all the world has to offer, but also to improve services and support for those with illnesses and disabilities, to educate professionals, MPs, policy-makers, commissioners and Department of Health and Government officials. I do this through sharing my own story, through the mediums of writing and blogging, public speaking and through filmed and recorded pieces. I try to put a face to the decisions they make, the figures they quote and the policies they make and educate them about what works and what doesn't.
The start of my charity work is rooted in the process of completing my advanced care plan (my wishes and end of life plan) with my hospice nurse and my mother. Whilst filling out the plan, I said to them both that I was frightened that I'd die and my life wouldn't mean anything, that nothing would be different or better because of me and that I would be forgotten. It was a heartbreaking thing for my mother to hear, especially from her seventeen year old daughter, however for me that was a huge release and was a sort-of revelation if you will, as releasing that fear spurred me on to make sure that wouldn't happen. Almost five years on now, I can safely say that my life has meant something, I have made a difference and contributed to society, that I have helped many people through my work and that I will not be forgotten as I have so many people who love, care for and support me and I will always live on in their minds and in their hearts, and my life and my work will leave a great legacy.
In my work I try to I raise awareness of:
- the issues the disabled and those with health conditions (especially life-limiting conditions) and their families face every day;
- the never-ending battles to get what they need;
- the need for 24/7 care and the funding to provide it;
- the desperate need to improve transition, so that the transition period between children's and adult's services is a smooth and coordinated process and that adequate support is available to the young person whilst they transition;
- the need for better funding in palliative and hospice care, which is a vital and rapidly expanding field of healthcare;
- the need for services geared specifically towards young adults who are the hidden or forgotten patients;
- better support for parents, family carers and siblings, through support groups, short term breaks, respite, better funding for and availability of community-based care as well as providing emotional and psychological support;
- improving access, physically for those with disabilities and impairments to buildings, to leisure activities, to employment etc., but also improving access to services, support, funding, education and equal opportunities;
- the fact that we are not just inconveniences, we're not just names, numbers and statistics, we're real people with feeling, emotions and needs, with families and friends, with hobbies, interests, hopes, dreams, goals and aspirations, and with lives to live and a right to enjoy all that life has to offer;
- and so much more.
Through my charity work I have done many, many things. I spoke in Parliament in November 2013, and attended an event in the Palace of Westminster again in November 2015, both for Together for Short Lives. I have been to the Department of Health three times now, attending a meeting of the Children and Young People's Health Outcomes Forum in 2014 and speaking at the Children's Health and Wellbeing Partnership's Takeover Day there, also in 2014. Then, in December 2015, I co-chaired an event for the Children’s Health and Wellbeing Partnership at the Department of Health with Jon Rouse, for the Young Person’s Health NHS Takeover Challenge. I have appeared on TV and radio, including on BBC Radio 4 for theirs and The National Library's The Listening Project, BBC Essex, BBC Radio 1 Newsbeat, Look East, Sky News and am appearing in an up-and-coming BBC Three documentary on digital legacies, due out in February. I was asked to become the spokesperson for the Open University Sexuality Alliance and Together for Short Lives' Talking about Sex, Sexuality and Relationships guidance which came out in December 2015, for which I did the recording and article for BBC Radio 1's Newsbeat in which I talked about sexuality and disability and my own thoughts on the subject.I have written the foreword to two guides/booklets, as well as a book, and my story has appeared in many other guides and documents. I have given many speeches now, appeared in videos that have been played at conferences all over the UK, and worldwide, too, written many pieces for people, written posts on a variety of topics for this blog, represented and worked with many charities and championed a variety of causes and had so many wonderful opportunities, met so many amazing people, some of whom have become friends, and achieved my goal to make a difference in a big way. As I mentioned above, for my charity work I was appointed an MBE in the Queen's New Years Honours List 2016, which is a huge honour. You can see a timeline of my achievements here http://www.lucy-watts.co.uk/p/record-of-achievements.html
Together for Short Lives is the leading UK charity for the 49,000 children and young people with life threatening and life limiting conditions. Click here to go to their website. I am an Ambassador and "Young Avenger" for the charity and have been since 2013.
International Children's Palliative Care Network (ICPCN) work tirelessly to get palliative care to the estimated 21million children who need it worldwide. I am ICPCN's first Global Youth Ambassador, appointed in February 2015. Go to their website here.
Pseudo Obstruction Research Trust (PORT), of which I am a Trustee. The charity funds research into Chronic Intestinal Pseudo Obstruction and motility disorders as well as supporting patients and family members. Go to their website here.
Dreams Come True grant wishes to seriously and terminally ill children and young people up to the age of 21. Click here to go to their website. I have been an Ambassador for DCT since 2014.
Scope are the UK's leading disability charity, supporting people with a disability running campaigns and challenging attitudes towards disabled people, such as through their "End the Awkward" campaign, for which I did a blog (you can read that here). Go to the Scope website here.
If you have a project you'd like me to be involved with, go to the Services page here or email me directly here.
I have a Working Cocker Spaniel called Molly who was born in January 2013. She is the light of my life and keeps me going and is a reason to keep fighting. She's made a huge difference to my life, people now talk to me and I feel included. We won Friends for Life at Crufts 2014, the worlds biggest dog show, and a Dogs Today Medal at the London Pet Show. To see more about Molly go to her page here and/or to keep up to date with her adventures follow her blog here.