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 your 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 [email protected].
See you on the other side 😉
Martyn
I identify with everything you’ve said in this piece Martyn.
A couple years ago i had an awful three months with a profiling bed that kept breaking down and not only was I not sleeping as a result of not being able to get comfortable I was having to ring every few days, argue, negotiate between OT, local engineers and Milbrook. It left me exhausted, angry at being fobbed off and with no faith that anyone does anything properly within these orgs/agencies.
There does always seem to be something to do, sort or organise with the numerous bits of equipment: wheelchair, 2 Bipap machines, battery packs, hoist, bed, car. Then there’s my care package, dealing with my housing association and contractors with a drain problem and manage my staff. That’s before the voluntary work I do and having a social life.
I am not a moaner and it is empowering when I get things done and see what I have achieved but so much of it could be avoided if systems were more efficient. I certainly wouldn’t want anyone else to manage my life for me and being so independent is brilliant but you can’t help letting out the odd sigh. I got an apology about the bed fiasco but I confess I felt like telling them where to stick it. I have become a very good letter writer over the years!!!
Like you, I had great experiences when I was young, never felt different to my peers with the exception of the first few weeks of wearing callipers and my schools, friends and family kept me grounded.
Your writing struck a chord so I thought I would send you my thoughts.
Sarah
Hi Martyn
Just read your newsletter and I’m going through a similar situation with charges for care . Social workers who get the scissors out without realising what they are cutting its pretty non stop .
I’ve been doing it 3 years now living independently and it’s been really hard and sometimes I question has it been worth it. It puts strain on my relationships with my parents . I’m now attending university but I worry about what happens after it. Can I go away to work or will I just be on benefits for ever not something I want to do.
I heard a phrase the other day that’s stuck with I am fortunately unfortunate. But we have to keep going mate.
Glad to know someone is going through similar things.
Keep going
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Just an aside as well to answer the original question I think Fear disables me
How’s everything going now?
How’s everything going now?
At the moment things are good it’s been a busy few months I’m working on my masters project looking at the effects of the DSA cuts that’s keeping me excited and interested. How are things with you
At the moment things are good it’s been a busy few months I’m working on my masters project looking at the effects of the DSA cuts that’s keeping me excited and interested. How are things with you