I don't really remember when I first knew that I was disabled. I've heard stories of how I didn't move like other toddlers. Then I remember being at school in my wheelchair. That first moment of knowing I was 'different' just doesn't stand out.
This is of course testament to my mum and dad. To my family. To my teachers. To my peers.
You see, the actual headaches and heartaches of being disabled come from securing and maintaining ones needs. My needs require Personal Care Assistance, housing adaptions, wheelchairs, other equipment like hoists, and accessible transport.
Like it or not, these solutions cost money.
Overall I feel lucky and grateful to be born in Britain. In Europe. In a developed country. I cannot imagine how my life would be without the funding and the amazing professionals here.
Unfortunately, when trying to navigate our support system it makes many feel - and actually makes them - 'disabled'.
As a child, my parents and teachers shielded me from this. They filled out the forms. Attended the meetings. Argued my case. Secured my needs. Gave me a future.
Recently, following a deterioration in my strength (and various other factors) I've been form filling/attending meetings/chasing people/fighting for my needs solo.
At its core I'm fighting for both my present and future self. A life once enabled by so many other great people.
So why do I feel - or actually become - disabled by this?
Beyond the time, skills and knowledge it takes to complete forms, speak in meetings, negotiate, progress and challenge inefficiency; it feels like you're constantly on the edge of a cliff.
Even when funding for care/equipment/adaptions are approved, you know it won't be long before the next one needs reapplying for. Reapproving. Renegotiating. It's exhausting!
Right at this present moment, 12 years after I left home, I'm:
- awaiting vital equipment for my wheelchair, to support my worsening posture. I started the process in December.
- awaiting the procedurally replaced adapted car. I started the process a year ago.
- meeting my social worker on Tuesday, to understand and discuss what happens when half of my care budget is compromised when the ILF shuts in June. Fingers crossed.
- after years of working, saving, researching, buying and adapting a house; that's just about sorted for now.
Sorry to rant. With planning the European project and doing my day job, on top of the above, I'm weary. I am aware that I'm blessed with my loved ones, health, happiness, usual positivity, amazing job and travels.
With a touch of spring you know I'll find the strength and willpower to carry on :-)
I wanted to speak out about this and see who else is going through the same things? Who else is going through worse stuff? Why does a great system cause such stress/fatigue/worry? Can we change it? And how?
Feel free to email me with your stories and thoughts to martyn@martynsibley.com.
See you on the other side ;-)
Martyn
Tweets @martynsibley
World Changer @ www.martynsibley.com
Co Founder @ www.disabilityhorizons.com
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