I have to admit I sometimes stun myself by what I do in a week, but this update takes the biscuit! As the previous 2 posts show in video format, I attended the disability rights ‘Hardest Hit’ march last Wednesday, along with over 5000 other people. I am not going to write too much on this because the video says it all. If you have any questions on the march and the proposed government cuts, do email me on email@example.com.
Then the bold move towards a new frontier and a new beginning… Last Thursday I took the decision to leave Scope after nearly 5 years. It was a tough decision and was not taken lightly. However for my career, health and leisure time it is the right decision.
Career – I have always wanted to run my own company. I am an entrepreneur at heart (even though you should never label yourself as one). Since I started my blog I have a deeper understanding of what disabled people require in 2011 (and beyond my own personal experiences). Therefore I dream to combine the two and plan to push on with my online social media projects, within my social enterprise ‘Sunnier Days’. My aims are to:
- grow my blog and create more online discussions with disabled people
- grow the magazine www.disabilityhorizons.com
- collaborate with charities and local authorities with my online seminars – presently on self directed care, travel and accessing local leisure
- create other online resources that empower disabled people through information and inspiration
- become a spokesperson for disabled people
- undertake ad hoc training and consultancy around disability issues (especially around online provision) for – government, local government, charities, business, DPOs and other relevant bodies
- uncover how it is to be disabled around the world (more on this to come)
It is also likely I will be working with a start-up company as their Chief Operating Officer. Fancy title hey! I can’t say too much for now, but this project looks very very exciting too.
Health – despite Spinal Muscular Atrophy (SMA) not being degenerative, there can be and is often a weakening in adulthood. SMA, for those who do not know, is a genetic disability. The anterior horn cell at the top of the spine is damaged and means the messages essentially do not pass from the brain through to stimulate the muscles. So whilst I have full feeling my muscles are not worked and therefore atrophy.
In the past couple of years, with tough winters (through chest infections and the cold effecting my movement), working full time and living the London life – I have definitely weakened. With running my own business I can fit in more swimming and physio by picking and choosing my hours. Scope have been great, but it is office based 9-5. The flexibility I will gain means I can slow down if my body says to, and hopefully grab a little more sunny warmth in the winter, while still working.
I am all about the positives and what I can do. However I do have a severe disability, there is a lot I have to factor into one functioning day (hoists, care, maintenance of wheelchair, car and other additional incidentals), and with not getting any younger it was time to make a positive health decision too.
I hope this part does show people life isn’t always easy, simple or plain lucky for me. I have had to overcome many barriers at school, uni, learning to drive, seeing friends and travelling. I do it through positivity, tenacity and the will to enjoy life. Things that everyone reading this can do. Point being I am enjoying life a lot, but I work bloody hard on all fronts to reap that pleasure.
Leisure – with full-time work and slightly deteriorating health, my leisure time (especially in winter) is the first to suffer. I know that while I won’t have the banter and camaraderie of the office, I will have better health and energy after a working day to see friends and grab a movie. Something I fear would diminish on the course I have been travelling lately.
With all of the above, despite the risks of leaving the enjoyable, comfortable and regularly paid role at Scope, I think you can see why I am taking a slight leap of faith. I know if things do not work out I will feel glad I tried and find a solution thereafter. Watch this space and wish me luck!