|soon i will be "on top of the world" again|
So great news as our new wheelchairs arrive this week! at LAST!
|this was a grim period of my life - as i now begin to journal the journey|
ones which saw wheels flying off and heading for the city and the patient into a very hard wall.
|pretty bizarre that an older person who drove this contraption, had to do so with the full control panel in her lap!|
ones which had no suspension coils for us with spinal arthritis and nerve entrapment.
ones which were too small for large ladies
and seats that were used by others, which should never be given because of the complexities of the other's conditions which could also mean incontinence and shaping a cushion to their own rear end postural need.
but we have to be grateful (all will say).
I SAY - depending....
if you understand the work it took to get them and the problems beset from day one.
I SAY - depending on why we have received them.
because quite frankly although they will be magnificent and perfect and body perfect for the sickness and conditions we have we know the fight also allowed our personal health deteriorate.
we know this because we are washed out, washed up and exhausted.
NO HEALTHCARE system should allow their staff to abuse the sick and elderly.
A major concern for me therefore has been 'cause and effect.'
the Need for these powered chairs was self evident as repair men were sent on fruitless journeys to our home armed with a spanner and duct tape, yes things were ducted up.
this story gathers as much momentum as a fast speeding wheelchair out of control with mega faults.
the reporter will though, leave out the faults and fase the fact.
- they were and are dangerous.
- they were always unsuitable.
- they caused harm.
the service providers caused and inflicted dreadful harm. especially on personal psychology of the older clients.
if you see magnificent wheelchairs now been given to the twins, remember with calm the chaos we have been under for a full five years, even longer with other issues we had also to endure.
the strain and the anxieties, the worsening of our health and the constant despair.
remember too, we are not over with the needs we have. We have many mountains ahead. a wheelchair is - a wheelchair replacing legs and allowing us to be comfortably able to traverse our universe as everyone else is.
remember, we are very sick and as one manager asked rather naievely 'when you get the wheelchairs, will that be 'it?'
Sadly, my response was 'Alas, No!'
i beg to remind the HSE that wheelchairs are actually a given in a person who is mobility compromised.
its not a luxury and not a sort of fancy tag on with "you should be grateful" tag on.
this item is about as paramont as getting prosteses for a leg long gone.
all wheelchairs must be fit for the purpose they are intended, to be used safely where the client wishes to use it.
many OT's in ireland today never ask the client how they wish to use their wheelchair, what they hope it will achieve and where will they take it and what will they do with it.
many OT's still do not know how to power up a wheelchair nor how to switch one on.
many do not understand what a wheelchair can and cannot do.
i have watched perplexed OTs fuss around a new or old gizmo looking to the technician for these simple answers.
the OT should be able to appraise.
if they cannot then they will be screwed by any hard-sell retailer or other.
you must be on the ball and the standards right now are rather suspect.
|sticking plaster temporary solutions are just that - temporary and expensive - wages, petrol, food, and time (for the repair guys)|
Recycling centres for wheelchairs seem to be economically bizarre in extreme, as the duct tape and pliers, screw drivers and screws attest to.
recycling centres to cobble together a moving item for a very sick or disabled person is bizarre
|such a grim period of our life - so wilful, harmful and both descended to utter despair, and still do - for the fight isnt over yet.|
You look to your wheelchair as the light of your life, the very stuff of existing well alongside your fellow human being.
i do not see it as some kind of freaky add on, a tag on to the word 'ah you poor fecker in that wheelchair.'
i am not a poor fecker in a wheelchair, i love my wheelchair with a passion.
Because i hate the legs and body i presently have and this is a dream job to help me get out and about.
Don't pity me for being in it, and no folks, do not ask me to keep the speed limit and who will win the race as you see twins go together along the road, in our gizmos.
Do not ask me do the chihuahuas pull me along like huskies, thinking that is incredibly cute.
i am a human being doing what everyone else is doing, getting on with my life with appropiate legs.
Do not jump out of the way with 'oh i am sorry.' when they see me sail along - you have done nothing wrong, and you have a right to get your butter and milk and i can wait till you have.
do not give me that pathetic smile as you see me come towards you - i do not read that one well, if at all.
just walk on by as you would every other person, most don't get a cross between wry/why/poor and fecker smile.
do not admire my brimmed hat loudly so all can see that you are talking to a wheelchair user.
i don't shout to others 'LOVE THE HAT!'
and mortify another.
I am now going a-walking as all do.
i am now released from one hellish battle from the HSE.
this is my release.
it is not a bonus point situation.
i am not lucky, it just means the rest still fighting are incredibly unlucky, because its a hellish fight and boy its some fight.
But its also not the end of care, its only the begining of trying to regain a life brutalized by a brutal system of care in ireland and by the state.
Daily we have examples of economic murder in the system.
Daily we hear of gigantuan 'top ups' for those organizing the systems for the sick and elderly and recently one of a 'top up' jump from the previous year of 131% more than the year before, an outrageous sum to go unnoticed and unchecked.
we also have the situation with the use of taxis for the staff of HSE and why can they not be like all other workers of this world.
Buy your own car, maintain it or bus it or walk it or dart it.
why should the state subsidize your travel expenses by means of getting you around by taxis no less.
This is the most expensive form of transport.
If you have a job be grateful because certainly i personally could do with one.
Perks are when the birds outside get the wriggly mealworms and nuts from me, to help them survive.
Perks for a well waged person within our public system is a crime against the very people who are struggling daily and being anihilated daily for even asking!
I challenge all disabled people now - stand up and fight to get your needs met. Do not be afraid that this system will victimize you and give you nothing for asking and for making clear your asking.
|outside the 'House of Plenty' demonstrating doesn't sit that easily but i believe its part of the democratic mandate to have your say when you know things are all 'arse.'|
|at the "house of plenty" Dail Eireann, yet again to beg for the crumbs from the table - doesn't the lonesome wheelchair look a sad little contraption?|
you have rights.
say it as it is.
and say it consistently in every forum you have at your disposal.
it hurts a lot to do, but i believe until the system understands the word 'equality' we have to do this.
Equality is a word not understood.
all in this state are equal, it says so on Liberty Hall right now - in case all do not know, we have passed the first 100 years of civilization in ireland, we have or should have gone from the potato diggers to the IT specialists 'mentality' but to me we still are at the stage of "if you love me enough, i will do this for you and you can do this in return."
the idea of 'stroking' another as in bribes, backhanders, a gift for a gift, (a leg of lamb for a dozen eggs) is long gone. Not so in the Culture of Ireland alas, this is Irish Culture, they/we are not used to replacing this with - a wage for a job well done...and nothing more.
You do a job and you get paid.
You help another because its your job.
You do not slay a person who is sick and elderly who asks for her needs to be met.
You do not slay a person who points to the irregularities in the system, the waste, the dangers and the shortfalls.
you should in essence be learning as i have done - the hard way
|what happened here? the control arm was tied up with string - but it came apart whilst trying to put chair back in van, it jack-knifed off the ramp and nearly ran twin down as it lurched backwards at the same time.|
not have a legal team second to none to defend the ridiculous and also the downright dangerous.
As for waste?
Well, yes, we have economic murder across this system.
and thats the major fault in our healthcare system.
Patching up makes no economic sense, its a short expensive way and a simplistic way of dealing with some very drastic personal situations.
You sort it man.
Just sort it and move on.
That's economic sophistication at its best.
So while i wheel along now in my chariot i leave that chapter behind me but unfortunately there are more battles to be fought.
Oh for it all to end, i am that weary of the fight.
The cost to the state in their battle with us must by now be enormous.
The 'top-up' recently of a Director of services of 22k for food and travel would have gone a long way for the sick.
Who saw that being done and why was it allowed?
My questions remain many.
The biggest being -
Why do you consistently say the sick are expensive, rather than saying that paying those to care for the sick is overly burdensome especially the 'top-up's to be economically viable.
we are paying too many for doing too little which is - economic murder.