Monday, January 7, 2013

Funny HAha Funny Peculiar!

It isn't isn't isn't that peculiar, as in strange, different or odd.

we are in the majority of the minority.
those of us with a disability.

As i live in Ireland i can only speak for the situations that arise here.
i have no doubt it is far worse than i even know, many many do not speak due to fear.

Many abroad may think Ireland benign, charitable and caring.
many in Ireland think very differently, especially if they are disabled.

Lets not mince and mixed the words anymore.
its too hard to be disabled in Ireland.

It is a crime to treat the less able the way we do as a nation.
it is a wicked crime to discriminate and violate the rights of those who can only whimper in the corner when injustice has been done and continue to be done.
both my twin and i have known this.
we have been on the receiving end of discrimination, violation of rights, even the rights that Ireland have signed up to in the european union and in the united nations.

I hate it.
i hate being Irish.
because of what Ireland and the government do to us, twins who have little and who can effect little change in our lives and circumstances.

tell me please how many worldwide would put up with knowing that they can feel their bodies disintegrate and can be told that others know it as so, and yet, the modern expertise is not being applied to find out why.
no testing is being done on identical twins who are using powered chairs now and do not know why their muscles are wasting nor why they have to use all sorts of aids just to do what ordinary people take for granted.

How can science and medicine in the Republic of Ireland stand by and let us degenerate like this without any consultant grasping the nettle and trying to find out why?
We are known as great educators, and people from far and wide come to ireland for the medical education that the Royal College of Surgeons, Trinity college, University college Dublin, Cork University and Galway University and many others give to non nationals.  Yet...for twins, we are not all!

ONe pathologist in Beaumont Hospital holds us in the hollow of his hands, for he has promised to look at my DNA again, to look at the common mitro deletions and see if its the make up of our DNA that might have mutated.

but he is out on his own.
there is no collective thinking on this one.
just one man bravely trying to source why we continue to go down.

London UK discovered enough for a process of knowing but when we return home to our country  we can do nothing more with any bits of knowledge gleaned in London.
Thousands upon thousands have been spent by twins traveling over.
the thousands are now gone.
we didn't have to do this, we feel we, as citizens of Ireland should have been treated as we were in London.
London treated us with care, consideration and with skill.
but even with the limited time they had on our bodies, and our appointments there, we had to come home.
we were only flying over for consultations, one hospital stay apiece and some bloods.
London wants us back over for more testing.
both of us --- together, as identical twins.

how can we get somebody in this government to chalk on the dotted line that they will consent to have us in the centre of excellence to be examined to find out why our muscles are wasting and all our organs being 'taken out?'

they have not the expertise here, we know this.
so if they don't, isn't it in the constitution that we are allowed travel?
so why cannot we then travel?
because simply, someone has to give us permission to do so.
if this isn't the case.  Please someone let me know how i can get over to london soon and fast.

we beg of those who read this blog, give us the information that will get us out of Ireland and back to London or even to America.

we are lying up in our respective homes, just lying on our sofas because we are weary, ill, tired and unable, - to move.

i want out of Ireland.
I can say this but thats all i can do.
i can type it but thats all i can do.
i can beg but thats all i can do.
i am no pilot, own no jet, own no Dail headed notepaper.
i am only me, lying on a sofa by a coal fire and waiting to die, from what, i do not know.
and my twin is lying on her sofa, by a coal fire and waiting to die, from what - well she doesnt know that either.

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