What if we viewed lived experience as an asset? As an asset of professional, economic,…
On Tuesday 8th October 2019 the 2019 Shaw Trust Disability Power 100 List was announced at a launch event in the House of Lords. Sadly I was unable to attend – I have been poorly this week with a chest infection and a kidney infection which has floored me – and being poorly, I missed much of the hype. So, I was absolutely amazed to discover this afternoon that not only am I on the list, but I am 9th on the list – the 9th most influential disabled person in Britain!? I couldn’t believe it. “Little old me” – how can it be? I am delighted, obviously, but a little bit awestruck as to how I’ve made it to the top 10. Things like this don’t happen to people like me. Part of me feels a bit like a fraud in the top 10 with such people as my hero (or should that be, she-ro), Baroness Jane Campbell, and Lee Ridley (aka Lost Voice Guy) and all the others in the top 10 – heck I am still dumbfounded at how I’ve made it on the list at all. I look at people and always think they’re doing so much and are far more worthy than I am. However, I do appreciate this incredible honour and feel just a little bit proud.
Thank you, as always, to everyone who has played a part in my journey. Especially those who have helped, supported and enabled me to do the work I do, and to live the life I lead. Take this recognition as recognition for what you have all done for me – I wouldn’t be the person I am today without you. I won’t list people as I’ll be here forever and inevitably forget to put someone’s name on and spend the next few weeks repeatedly editing and adding people, not as I remember them, but as I feel also deserve some recognition and that list of deserving people will just grow and grow – because it really is true when they say “it takes a village” – in my case, a city has got me to where I am!
I also wish someone could’ve somehow shown me 10 years ago where my life would be in 10 years time. This time a decade ago I had developed multi-organ failure, was tube-dependent, bed bound, in excruciating, unmanaged pain, no life, almost no hope, and just about to be told I wasn’t expected to see my 18th birthday. I didn’t see a future for myself. I could barely even call my life an existence at that time. I wish I could’ve somehow seen where life would take me in a decade; though, I am in no doubt I wouldn’t have believed it if I’d seen it, I honestly think I’d have laughed in the face of the person trying to show me, as this was so far removed from the Lucy I was 10 years ago. Shy – painfully, painfully shy – didn’t even want to speak a word in appointments (but was just finding out that adult services won’t accept a parent speaking), giving a speech would’ve been my idea of a nightmare, being in a meeting full of professionals would’ve terrified me, and I would’ve thought everything I do now is completely beyond me. “Not my life” I would’ve said. It’s amazing where life takes you. My illness has taken so much, but boy has it given me so much – I live this life both despite and because of my illness. I’ve had so many amazing opportunities through being ill. If I wasn’t ill, I’d be a doctor now, but I like to think that what people have told me is true – that I’ve probably made more of a difference as a patient, than I likely would’ve as a doctor. It’s some thought.
I hope I can inspire the next generation of disabled young people – to show them to aim high, and not let others’ narrow minds limit their goals, dreams and aspirations. There’s a life beyond illness – even terminal illness – and there is no limits to our potential. Shoot for the moon – regardless of the outcome, you’ll land among the stars.