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 and to my peers.
You see the actual headaches and heartaches of being disabled come from trying to maintain one’s needs. My needs require personal care assistance, housing adaptations, wheelchairs, other equipment like hoists, and accessible transport. Like it or not, these solutions cost money.
Overall I feel lucky and grateful to have been 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 and argued my case. They secured my needs and gave me a future.
Recently, following deterioration in my strength (and various other factors) I’ve been form-filling, attending meetings, chasing people and 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 and challenge inefficiency; it feels like I’m constantly on the edge of a cliff.
Even when funding for care, equipment and adaptations are approved, you know it won’t be long before the next one needs reapplying for; reapproving or renegotiating – it’s exhausting!
So, 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. (Keeping my fingers crossed.)
Sorry to rant. 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 talk about this stuff and see who else is going through the same thing? Why does a great system cause such stress/fatigue/worry? Can we change it?
Feel free to email me with your stories and thoughts to: email@example.com.
Martyn Sibley is a blogger aiming to inspire, inform and change the world. www.martynsibley.com
Able is interested in your stories and blogs. Send them to: firstname.lastname@example.org