Tuesday, October 11, 2016

Wheelchair Saga-Wheelchair Trauma of the Kennedy Twins, Ireland

when you want to change a system from one of abuse to one of 'human rights'  

So true!  Ann and Margaret (that's us) have a progressive neurodegenerative disease, with a complex process occuring which is multisystemic.
this is NOT just a toothache, its has proven to be a heartache, a trauma and a journey i wouldnt wish on anyone really.
The journey has been a tough one.
it should NOT have happened.
and it SHOULD NOT ever happen again, the abuse , the pain, the distress and the decline in health is testamont that to put any human being through such suffering destroys lives, in more ways than one.

but the journey was of 'wheelchair provision' for identical twins with few supports and very needy.
it began at the beginning of a sojourn in a new county, that of Wicklow, the present residence of the Minister for Health.

its been life changing, and all for the wrong reasons.  FAITH, in humanity has died a death and is buried deep in the rubble, and its rubble believe me its rubble.
No one should have to go through what we have just been through - i hope this is the war cry against such treatment.
Fall out in terms of relationship with the HSE also has taken its toll, and no need to have been so aggressive, and antagonistic.
it was a large organisation pitted against older twins.
but do you win this ever, or is there a very deep cost?
there is a cost of course, to our personal health, our care and the attitude which i guess now have stuck.
but its proven fact the fight has to be gone through, yet shouldnt have to be so tough.
All manner of things were debated and even part payment was suggested.  two years later - we are on the cusp of acquiring fabulous state of the art wheelchairs.
Wheelchairs folks are not Ferrari's.
they are 'legs' and that is what they do, they walk for us.
when we cannot.
they are a prosthesis, and we needed them along time ago /
between then and now the accidents have been at time verging on possible serious injury.
this should be attached to the wheelchair with bolts, not a cable - very dangerous!
we had tyres ripped, puntured, wheels falling off, control knobs doing the same and whole side panels falling to the road when crossing it.  we had arms swing lose away from the hand and guiding knobs come away in the hand.
crossing a busy road the full side panel with control knob fell off!  The previous image shows a 'before - duct tape'
we have also had, near misses of going into ravines on side of paths leading to a steep drop.
going into nettles and into mud.
Sometimes you just don't need the words to tell the story.
we also had injury for these contraptions of makie uppie wheelchairs cobbled together at a recycling centre of the HSe, a bit like the dumps of india collecting this and that from this and that and making er, a wheelchair.
someone who worked in the third world once said that he was shocked at what he had found in wheelchair provision in ireland - that has to be a mighty wake up call if you ask me.
trying to change a 'system' can be exhausting, damage your health and take years - i say its worth the attempt.
attached to every wheelchair is a human being - even if it takes getting to the Dail for what appears a fruitless exercise - do it.
so the trauma and mostly trauma can be documented in pictures and usually say more than words, as you absorb the reality of duct tape, and mess and damage and problems.
here are the issues, the damage, the problems and a final word the wheelchair.
people have to BEE-lieve that changes needing change can be brought about
Looking for environmental hazards should be a community enterprise - it was

Community ends with the cuppa chait is never impossible to try and make a community better - if it means the paving for a wheelchair user, or the buildings, accessibility - BEE the change....
the Bee-ginning of trying to make 'greystones' an accessible town for all - where this first attempt has gone is anyone's guess.
in your efforts to have your needs met, you can become fixated, so much so it swings and fixed to ceilings, the image of an ever turning trauma, the winds of change.
sometimes being a 'pack horse' on a cold day returning from celebration you can feel weary, but oh Lord its worth it.

another chance to educate and teach through learning and example, don't put your graduates in the broom cupboard while they wait to go up for their certs on graduation day.  

Finally, if you can't beat em you join em, and you study to learn, to transform and to bring a change about.  Margaret my twin the first of two to graduate from Limerick University on the first programme certificate post graduate course on wheelchair/posture seating assessment.  Devised by Dr. Rosie Gowran, Limerick University.

absolutely DO celebrate - deserved.
celebrate - for 'every little drop counts said the wren when he pee'd in the sea!

if the deck of cards never got yourself to university in order to do the post-grad what you do then is absorb the feeling and celebrate anyway, someone has done it! 

this happened three years ago when i went to the top of Killiney Hill for the very first time in ten years - now this is LIVING as an equal human being.
the wheelchair i had researched, trialled and felt was the one for me - is now winging its way to me.

it has been a very tough fight.
we will celebrate our newness as equals on Killiney Hill very soon, we will 'Party' there and invite YOU ALL, come party and celebrate, after all trials, tribulations and dramas, pain and trauma
-you celebrate-
-the success of the journey's end with a major win -

when once you knew we 'had not got this one right' (twin on right)

when we always knew what Equality means and Life is so short.....

1 comment:

Dr Margaret Kennedy said...

Brilliant! The awful thing was...nNOT being heard...as if what we were saying was not true! It does your mind in it really does. It makes you feel worthless, nothing, nobody. The HSE were perfectly happy to see us going around in crippling, crucifying dangerous wheelchairs. They didn't care. Now we have to say 'thank you' for our lovely new wheelchairs...ut the cost emotionally, psychologically was simply...too much. I don't say thanks for that.