Hello from Charlie
Having read the various other Voices, I was a little unsure what to write - the brief of “talking about my experiences” is, quite obviously, incredibly large. In the end, I decided to stick to a short introduction to myself for the time being, with the intention of expanding on a couple of issues at a later date if this sparks any interest from people. I may even migrate this to my blog, if there is enough interest.
I will confess that my views and opinions on certain issues within this particular realm (such as the employment and management of ‘carers’, or indeed the D-word in general), are perhaps a little unique and possibly controversial - nothing inflammatory or offensive, at least I sincerely hope not, just somewhat divergent from those I have encountered in the past.
Please note that the order in which I introduce myself, below, is not the order I would ever normally use - in fact quite the opposite - however for this purpose it seems appropriate. Note also that my avoidance of the D-word is not accidental.
So… to give a little bit of background about me: I am 35 years old and, using the traditional scale, have severe Type II SMA. ‘Severe’ is the operative word here. I use a highly specialised electric wheelchair, need near 24-hour non-invasive ventilation and obviously require 24-hour care. I live independently from my family, employing a team of people that I manage myself with funding from Social Services Direct Payments, soon to be moved to the NHS Continuing Healthcare system. Without any exaggeration, I can literally (just about) lift a finger.
Despite this, I have been working full-time for all of my adult life as a university academic, having obtained my doctorate roughly 11 years ago after a standard school and university education. I am now a Senior Research Fellow at the University of Reading, and a part-time Lecturer at the University of Oxford. I am an internationally recognised scientist, and have published significantly in various academic journals as well as writing a book several years ago. I have lectured extensively across the world, and have (or have had) a team of PhD/MSc students under me. My field of expertise in general terms is climate change, but more specifically in African climate variability and the impacts of climate change on developing countries. If at all interested, you can find out more about my professional side at my website, or my Twitter feed, both listed below.
Although I enjoy my work, it is not everything to me. Outside of work, I am an experienced traveller and am fortunate enough, either through work or pleasure, to have been able to visit countries within every continent, bar one (as a sun-worshipper, Antarctica holds little interest for me). I am lucky enough to have someone very special with whom I travel, and together we have done numerous exciting, crazy and occasionally downright dangerous things. My constant fear is that she will one day tire of me, but perhaps that’s called being a (slightly insecure) man. Aside from travelling and experiencing new cultures, I am a keen foodie, enthusiastic home-cook and amateur restaurant critic, and maintain my own food blog and Twitter feed (again, see below). I am also a keen yachtsman, having been brought up on various sailing and river boats, both throughout the UK and abroad.
You may well ask why I am writing this, and why now. The first question is easier to answer. I am certainly not writing this to boast, and I am most definitely not saying that my life is perfect - everyone has their problems, regardless of having extra requirements or not, and I am no exception. Furthermore, I do not see myself as an inspiration to others or anything even remotely approaching this. I am simply writing this, as I said, as an introduction to myself for a group in which I would like to become involved, and for whom I would like to volunteer my services in whatever way that is useful. It may well be that I have nothing useful to contribute, in which case that’s perfectly fine.
As for why now, that’s more difficult to resolve. Perhaps because, in recent years, I’ve become increasingly aware that the hourglass is emptying, and who knows how much sand is remaining. Or perhaps it’s because, despite lots of involvement in many other charitable organisations, I have historically avoided anything related to the D-word. My reasons for this are a topic for another day, but perhaps it’s time that changed. As I said, my thoughts in this area have often not been in line with others in similar circumstances - however, this is based on my own past experiences only, and were perhaps less well received because they were expressed by an arrogant gobby teenager with little concept of tact. I would like to think that with age comes wisdom - and that those who think they know everything, actually know nothing…
Work profiles: http://www.met.reading.ac.uk/~charlie/ and @charliejrwill on Twitter