Being a disabled person can be so exhausting. Even just to get out of bed we have to prove the case for necessary funding, equipment, facilities (accessible housing) and manage a team of people. All before breakfast!
By lunchtime we hear how government policy is regressing. The ILF closure and Parliamentary apathy on the 'Social Care Bill' hang heavy over us. We then hear from the media on how we either 'triumph over tragedy', or that we are 'benefit scroungers'. By dinner time the employment rejection letters from companies, and pats on the head from Joe Bloggs take their toll.
On a brighter sunset, I know of some disabled people who do succeed but experience bitterness from their allies (due to divisive PR messages), and see regressive/demotivating support from the system.
Life has been really tough for me lately. I've recently seen a deterioration in my condition, from getting older. My wheelchair broke down, and my adapted car has been misbehaving too. I've left my rented accommodation due to it being unaffordable and inaccessible (my life belongings are now in storage).
Finally I've been informed that my social care budget to 'live as I choose' with Personal Care Assistants is likely to be cut. This follows the closure of the ILF in June 2015.
Beyond my disability, I've been self employed nearly 3 years now. It's a decision I took for health, happiness and freedom. However, having no regular guaranteed income or employment support does take its toll sometimes. I work more hours than you'd ever imagine.
So why should we even bother aspiring to a greater life? Despite all of these reasons to retire from life, I'm ever the optimist!
I know that constantly fighting and never giving up for your rightful support is worthwhile. With the right funding, equipment, facilities and people in place; you can do anything. Mindset is important and sometimes compromise and innovative thinking is required.
For now, having stabilised my foundations, I'm living the life I dreamt of 3 years ago. I have:
- A beautiful lady in my life
- Amazing family and friends
- My health and happiness
- Business projects that allow me to support great clients, use my creativity, marketing knowledge and lifes experience
- the opportunity from adversity to stay in Spain this summer, visit other countries (including Japan recently) and expand my horizons further
If you are disabled I beg you to please try and stay positive. Only you can fight for, and earn your freedom. There is always a way. That is the way that works best for you.
A little note to other potential readers:
Government - If you cut disability budgets, you'll see a rise in physical and mental health issues later. By investing in disabled people; you reduce health costs, create employment for those who can work, and jobs for their care team, you'll receive more taxes and higher consumer spending. What a 'no-brainer'.
Media - You can really help stop discrimination and oppression of disabled people. Just portray us as people who will do their best with the right support. Sensational doesn't always win the day. Doing the right thing does.
Everyday people - You hold the trump cards guys. If you forget stereotypes, naturally integrate with disabled people at school, work, and in your communities; improvement begins. Then the media will catch on. If we tell our government why disabled people aren't a cost or burden, but a vital investment for cohesive societies; we'll all be equal before I head off and leave this world.
I look forward to hearing your reaction, thoughts and personal situation soon.
World Changer @ www.martynsibley.com
Co Founder @ www.disabilityhorizons.com
Social Media Man @ sma.sunnierdays.co.uk
Healthy Goodness @ www.todaherbal.co.uk