So the older person or learning disabled person abused in a home, the young child damaged at birth by medical blunders, euthanasia debates over elderly , sick, dying, homeless people dying , This is grist to the mill...it stirs people, it enrages, it titillates in a different way. It strikes the heart of those of us who care. and I do care, about all of this. These are worthy stories which need to be reported.
They are what 'sells' newspapers. Big murders, scandal, skulduddery, people in high places unmasked, and so on. the voyeuristic new 'porn' sells.
So the daily drudgery of ordinary individuals whose lives are decimated by a failing health system, failing care system, failing support system does not draw the heart in quite the same way as a child dying, a young person loosing their legs (particularly if in an heroic act or utter tragedy), or a murder of an older person by their son, or terrorist or vagabond!
The ordinary daily decimated life is not 'porn' enough. it does not sell.
Another thing which does not sell...is any criticism of the 'system' that newspaper owners rely on. Politics has invaded journalism like never before. journalists seem unable to be 'pure in heart'. They write what will sell, Not what will change or improve the system.
There are exceptions of course, there are journalists who have their slot and use it well. Beatrix Campbell, Julie Bindal, Carl O'Brien, Finton O'Toole, come to mind. The greatest of all in Ireland were Veronica Guerin and Mary Raftery. Both now deceased. Cut down in their prime.
I know Mary Raftery would have highlighted mine and my twin's plight. She would have 'heard', she would have reported it. She had integrity, she had 'soul', she cared. I knew her...she knew me...I miss her...she was NOT into 'sexy' or 'porn' journalism, she was into truth.
But no newspaper wants the story of the daily trudge of the Kennedy Twins lives as two elderly people with an obscure unknown rare disease, whose lives have been tormented by HSE officials who rather than helping have created further suffering,
Looking at how and why we have been reported over the last few years is interesting. It has been 1) if we holler outside the Dail with catchy visuals like pink bowler hats or red scissors...this is 'sexy'! innovative, new, interesting even eccentric. especially if a 'notable' endorses us in some way.
2) as vibrant, brave, independent twins with rare disease but battling on regardless.
3) if a disaster happens such as wheels falling off a HSE wheelchair...
These are all in the category of 'porn'. All 'sexy'.
But over ten years of struggle to get a diagnosis; of an Irish health system ignoring rare diseases, putting up barriers, not caring, and just...well...treating us (and many others we know with rare diseases) with utter contempt is not 'porn' or 'sexy'.
The fight for a decent wheelchair off the HSE is not 'porn' or 'sexy'. It WOULD be if we were 5 years old with an horrific disease or physical disability...certainly too, if pretty, with pink ribbons in our little pig tails. This is the 'aw' factor that sells. Not pictures of the 63 year old wrinklies from Greystones, Co Wicklow.
It never is a NATIONAL concern, never reported in the NATIONAL press...I mean, come on...wheelchairs are NOT 'sexy' ! No-one wants to know if I can get from A-B in safety or comfort. Or indeed, get from A-B at all!
this is not 'self-pity' writing here, this is reality. This is how the media works.
The fact older twins with a rare disease are being daily 'neglected' by the HSE services; mostly the managers, intent on not spending money. Not generally the front line workers who try to be kind but have their hands tied.
The fact disabled and ill twins have no-where to turn to get our story heard doesn't 'grab' the journalistic 'porn' industry. The industry of 'sound-bites' not marathons!
The fact those in residential care have HIQA to fight for them but those in community care, living in their own homes have no-one, doesn't seem to be 'sexy' either!
This is all boring Margaret, Boring, Not the 'porn' we need.
So what are twins who languish in an Ireland that largely has ignored the suffering of elderly, ill, disabled, person living at home in their own community...we carry on creating new ways of getting the story out. Trying not to fall into 'porn' or 'sexy' sound-bites which we abhor. Yet being catchy enough to raise interest.
We do-not give up. We seek to improve the lives of all in our 'boat of despair' . We fight for all.
The daily toil of many disabled and ill elderly DESERVE to be heard.
NO we don't give up easily...even in torrential rain.
Check our facebook pages :
Wheelchair Rights Ireland and Victims of the HSE-Unite
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