'Piss on pity-Rights not charity'

This week I rang into 'Liveline' an RTE programme hosted by Joe Duffy.  They were interested in what I had to say about 'top-ups' to charity executives and asked if I'd be willing to go on air on Monday, yes, I said OK.  I had to be at home at 1.45 - 3pm , to be 'available'. 

They called me twice that morning to discuss my views before the programme went out.

At the beginning of the programme Joe Duffy's intent was to speak  about the Central Remedial Clinic's CEO getting 'top-ups' to his salary; apparently taken from money raised by ordinary folk who thought it was going to poor crippled children or adults.

I said I was horrified about the top-up's and that was ok, then he listened to two parents who had CHILDREN at the CRC.  They had a good long chat and I was at the end of the phone bucking to get a word in for ADULTS, for the issue of charities plugging the holes of HSE failure to support disabled people. So I 'interjected' to raise these points, mentioning the failure of my sisters and mine powered wheelchairs...  Who provided them he asked, I said the HSE....ah that's not what we are talking about he said.  I remonstrated...what I'm trying to get across here is a) the charities are not doing the great work everyone thinks they are b) and neither is the HSE and frankly why should charities plug the holes anyway. Charities have become 'businesses' and THAT is fundamentally a private, non-state service, paradoxically funded by monies given by ordinary people! Charities exist usually for those people the Government don't want to support such as the elderly, homeless  Drug Addicts, Disabled people etc. We cannot get rid of charities, many do good work, but politically marginalised people should be supported by the state as equal citizens.

I was saying or trying to say why should disabled children and adults have their support needs met by charities.  He didn't like this, was rude and dismissive and moved back to the mother with child at CRC.  Then my phone-line went dead! They cut me off. 

A woman rang back to say thank you and I said 'but you cut me off' 'dead in my tracks'.  Her excuse...to free the lines for other callers.

The ordinary person in the street give generously to charities, especially those involved with sick children, Jack and Jill organisation have been funded by the public to the tune of 50million. Laudable indeed, but very sick kids are emotive, not so elderly or disabled adults.

When it comes to older disabled people...forget it.  The HSE doesn't support me, my nurse whom I called yesterday as I was so unwell wasn't available, and has not yet phoned me.  My GP I phoned twice on last Friday, no return call. I called emergency doc who gave me medication that looked like might not be safe with my present meds so called my GP surgery again on Sat morning, no return call.  Monday a GP called ' I believe you wanted to speak to a doctor', 'Yes I said but you are too late, I took the pills and hoped they wouldn't kill me'.  She said she'd only got the message Monday morning.  OK so...great...I could have been DEAD by the time she called me on Monday!

Charities don't support me either.  I have tried to get support from a charity dealing with Parkinson's (my condition) well a helpline is available but no local support.  I tried the Muscular Dystrophy society (I'm covered by them for my muscle disease) a girl came out , took details I never heard from her again.  They had the gall to email me asking for a Christmas donation! When I complained a man rang me, I couldn't take the call and he never rang back. There is NO organisation in Ireland for my disease, which is so rare I have to be treated in London - though a facebook page is available.

The HSE have not provided me the means to get back to lecturing, or even out of my house,  I have 7 hours a week PA, as I use a wheelchair, this is NOT enough to get me back to work.  I asked the disability social worker to help, he came, took notes, said he'd give it some thought (on how I get back to work) but I never saw him again and he refuses to answer my phone calls or emails.

My powered wheelchair provided by the HSE is so crap my fist trip back from train station so ruined my back (spinal arthritis) I was admitted to hospital the following day.  The hospital bed provided by the HSE is sitting unused in my bedroom for a month now.  First there were no sides to it (I need these to help me turn over') , then the mattress was so thin I felt the slats and motorised mechanism which was too painful to lie on,  Then the motor died, days to get fixed, then a parcel arrived!  Ah good, the sides....no...wrong item...no sides. 

So the issue is NOT the 'top-up's to CEO's, the issues are why should disabled people, citizens of this state have their needs met by rattling buckets and philanthropic cheques from 'do-gooders' or 'feel-gooders'. We are citizens.  Yet adult disabled people, elderly people won't find support they need to live life 'worth living'.  Top-up's to CEO's and Medical personnel is a serious issue but dealing with them won't save a medical service that just does not exist for disabled people.  Charities can't plug the holes and shouldn't , for it's humiliating and degrading to realise that to get what you need you have to beg for it.

And the only thing people do in this country when they are angry is phone up Joe Duffy!  and he is as rude as hell and won't be changing anything ....we need to get onto the streets to protest.  but no....that's not what this population does. years of subservience to Church and state has groomed people into sheep!  They will be shorn , fleeced, but they won't protest.  It's quite sickening.

Ireland's Health Famine and the chosen few.

It's a very cold day out there, but the sun is shining and there is a clear blue sky.  My home help is just gone, wracked with worry for her son-in-law with liver cancer.  It doesn't look good, she admits and we share the unfairness of life.  Yesterday my cousin Lucy called and I was delighted.  No-one bar my twin and neighbour Carol ever cross my door and it gets very lonely these days.  I always had visions that my English friends would 'keep in touch' when I left the UK after 42 years but I don't hear much, well, nothing really, from them at all...at all!  Only one has crossed the ocean to visit.  Again this is a shock to the system.  You can tell I'm not having an especially good day today.  I think because I'm very tired and done my back in again.

I wonder really where society is going in it's moral/ethical visions of 'caring', or if 'caring' is really a bygone ethos, almost 'old-fashioned'.  Here where I live someone on the 'community' forum declared that people HERE would not 'walk-by' the needy and homeless as if this place was somehow the centre of 'caring' in these parts.  it was arrogance, for around about me loneliness is killing the elderly and not so elderly. not so long ago I put a note in all my neighbours doors asking if anyone could walk my dog when they are taking their own dog out.  not one answer. so tell that to the woman who believes people here in my new village would not 'walk by'.

then there are the chosen few in society who get all the love care and attention of whole communities, whole nations.  these are usually children.  very sick children.  I'm the first to cry when I see a very sick child, but the almost hysteria-like campaigns around some high profile little kid, usually dying of some dreadful disease, worries me. I look upon the t-shirts with loved pictures on them, whilst droves of 'communities' go on walks, fun raising, and such-like and wonder how THIS kid, became so famous in his/her suffering.  yes, I do like to see families supported, no doubt about that, but there are adults and elderly really in agonies of suffering and because THEY are adults, not being so cute, they don't get the same support, campaigning for their suffering. no-one rallied when the 90 year old man, my sister's neighbour, was in hospital recently and there were no relatives to visit or take his 88 year old friend to see him.  my ill sister did that.  when he came out of hospital none of his neighbours brought food.  we did.

my community nurse spends most of her time with new born babies.  they get the obligatory visits but the elderly do not. so whilst the local 'famous sick kid' is feted, campaigned about, t-shirts made, events arranged, what about all the other sick disabled, elderly lonely people.?  and what about the politics of such campaigns.

is this a real socialist community all-together effort?  no, this is apolitical.  it is like an event,  staged and fun to do.  it makes people feel good.  'the feel good factor' is not political.  it is a sop to guilt. whilst fighting little kid battle, we can ignore all kids battles with the corrupt and dying infrastructure of our health service.  these campaigns say nothing about the state of this nations poor, neglected sick, elderly disabled population.  private entrepreneurship - fund raising, is charity and charity itself sucks the responsibility away from politicians. we have kids living-living in hospitals because they have tracheostomies and no local care/support for them to live with their families.  we have disabled people with no wheelchairs, older people with no home helps, and the list goes on.

so whilst the 'community' makes one life better or easier for one child there is not the out cry about the poor abysmal medical/social services for the majority of public patients in this country.

but I am a hypocrite, for I'm doing just the thing I hate...fund-raising for a medical need not provided by our heath service.  Who am I then to cast any criticisms on these individualised/popularised/mega hyped 'poor kid needs' campaigns...but isn't this the awfulness of it all.  we are all now out with our begging bowls. we are back on the Dickensian streets of Ireland, famine Ireland, begging for what we need.  in my  case, and my twins; we are 'begging' for good powered wheelchairs'.  charity fund-raising IS begging.  is demeaning and humiliating.  and austerity has got us all, who are sick and disabled rattling the boxes and begging bowls. we have opened a bank account in the ulster bank in bray Co Wicklow, acc number 11281838, sort code: 985375. that's the begging bowl!

but we are 60, 61 on Monday 25th November, not cute kids in distress, but old wrinkles trying to just get out and about.  and whilst my feminist-socialist-Christian leanings abhors the culture of begging , Europe, bondholders, corrupt governments, and troika officials force more and more into a famine of need that may yet surpass the last famine of food.  Archbishop of Dublin only this week said there are hungry children in Ireland, that is famine of food, but there is famine of health too... and the health famine is ignored as high profile 'little kid dying needs treatment' campaigns lets the corrupt government off the hook. 

there are hundreds of sick, disabled and elderly needing 'treatment' they are not getting.  we are in a health famine and no-one seems to notice.

 

A quadriplegic's response to the Tim Bowers story - The Drum (Australian Broadcasting Corporation)

A quadriplegic's response to the Tim Bowers story - The Drum (Australian Broadcasting Corporation)

Why is being openly feminist in the boardroom seen as 'damaging'? | Women in Leadership | Guardian Professional

Why is being openly feminist in the boardroom seen as 'damaging'? | Women in Leadership | Guardian Professional

I am not in the boardroom but I do mix in conservative circles.  YES I am a FEMINIST.  VERY!

Wish I could afford this necklace...at £250, a little bit of a luxury!

Go for it Girls!

strong in my weak places -like him!

double buggy picture removed.

Now there is companionship.  Double mobility scooters for loved ones.  I love it.  I see the manufacturer is in CHINA!   and we think we are progressive?

What does it say?  say to me?  It tells me that all disabled people need a companion.  A 'soul mate'
and 'soul-mates' need not be a married partner.  it can be your neighbour, your friend, your family member.  but we all need someone! especially those living alone.

being disabled, being ill, especially 'becoming disabled/ill' is very difficult.  there are no 'rule books' no templates on how to survive emotionally , physically or spiritually. it is especially difficult to do it alone. I have not yet reached the stage of believing 'life' is crazily wonderful in this state of blighted body. maybe you never do...I don't yet know if it's possible. no-one has told me it is, when support is non-existent and you can't make anyone (HSE) hear!  But there's only one way to do it I guess...

...grasp every minute of life you have.  easier said than done as I sit here wondering how to get my day going. 11am, not dressed, not washed and just wanting to go back to bed...no that is not a solution. one has to 'live'. 

and here is a story designed to make you feel just a little guilty for the inertia, for the sitting around pondering.  a man who is living...a story of sheer guts, determination and strong in the weak places!

I want to be strong in my weak places....like him


http://www.dailymail.co.uk/news/article-2494162/The-doctors-told-let-Simon-die-Instead-tried-baby--ended-twins--The-inspirational-film-maker-refused-accept-death-sentence-Motor-Neurone-Disease.html

Bed bugs and chariots

I was awake at 4 am and finely decided that my night was over at 6am.  you simply don't feel like getting out of bed at 4am! these days I love seeing the skies turn from pitch black to grey to blue (if that's a good day).  I LOVE seeing daylight.  Nights are a nightmare, in pain, writhing for a comfy position, Which invariably is impossible.  daytime means people are around.  You don't feel so alone.

Now I have two beds...one ordinary, bog-standard double.  The other is a hospital bed in my spare room.  Unfortunately hospital bed came out of the ark.  Single, no bed sides (which I need to turn over and also bank pillows against).  The mattress is two inches thick...I ask you!  That's a BUG, a BIG BUG!  How can someone with severe spinal arthritis lie on a two inch rubber mattress where you feel all the motor mechanisms under your bum and back.  Occupational therapist came with a bed side three weeks ago but it didn't fit. so went away. I haven't seen her since and in the last few days she hasn't answered my phone calls.

Now for chariots,  wheelchairs.  Ann and I went to a fab wheelchair expo this week.  Fab wheelchairs...oh so fab..rolls royces rather than the reconstituted buckets the HSE have given us.  I ask you why do sick and disabled people have to suffer in a chariot more flintstone than modern?

Because we cannot afford the approx. 24k to buy two fab chariots, that's approx. 12k each, one for me one for twino.  and the HSE said they can't afford it either.  And no willing charity out there is up and running to provide any wheelchairs for us either! So the orange box on wheels is about as basic as we're going to get. 

We've started an appeal by the way, to get our own...not doing so well as so many in the age of austerity are struggling.   We also need a new van for transportation so the whole thing comes to 50k...an impossible task...


Irish Times August 20 2013   our fundraising account is 11281838  sort code 98-53-75  ulster bank, bray, co Wicklow. cheques payable to Ann Kennedy or Margaret Kennedy

All very much appreciated.

Continue...at the wheelchair expo...

Then I learned that there is a difference between 'indoor-outdoor chariot and outdoor-indoor chariot.  The former is predominantly built for outdoor terrain, but can be used indoor, the latter the other way round, made for indoor use largely. The HSE bucket I have is an INDOOR wheelchair (aka chariot) not even an indoor-outdoor. It's plain INDOOR!  Now why in the name of God would I be given an INDOOR wheelchair when I live on top of a mountain (well nearly) and need to go two miles to the nearest train station? They KNEW I needed to 'get out'. Well the logic is simple.

throw them anything!  What's in store?  Oh yes... Ok we'll give them that!  To heck with the 'assessment'.  As well as this I discovered my wheelchair has no suspension...designed to stop your body jolting over every rut in the road and here am I with severe spinal arthritis.  No wonder I landed in hospital a few weeks ago in the severest of agony.

furthermore my 'tilt facility' is not working on my bucket. that's that 'Lets lean back and rest abit as I wait 4 hours to see the doctor...or three hours on the train. Nor is there a head rest.  so even if I HAD a 'tilt facility' my head would fall off backwards! Not a pretty sight!

so bed bugs and chariots made/produced by the Irish HSE (health service) is designed to entirely make you worse off...thus requiring more medical attention, not less...and this they call 'saving money'.  AAAAHHHHHHHHHHHH you could scream in frustration!

Going in the back door

So, most people do like to enter houses, museums, banks, etc through the FRONT door.  The front door is how you get in .  In days past the tradesmen, seen as lower status either went trough a side door or the back door.  There was a ranking of whom should go through the front door and whom should not! this applied to black people too!

You simply knew your status. it was and remains discriminatory.

As a wheelchair user, particularly in public and on long trips I am utterly sick of the back door entrance for wheelchair users to all sorts of places. :Usually the 'back entrance' is down an alley,  scruffy, unkempt and smelly and nasty.  Corridors unpainted, or dirty, mops, bikes, boxes, piled against the walls.

This weekend I gave a lecture at a conference.  The organisers told me that my taxi would have to take me to the back entrance for access. I said sarcastically "Oh, when did disabled people EVER go through the FRONT door"?   Now I'm not criticising the group who organised this venue.  they had little money for a posh venue and even the front entrance was woeful. But the taxi man could not find the back entrance and when he did the road and pavements were dire.

Having cause to see a solicitor recently in a big Dublin firm the disability access point was...guess...at the back.  but I did not know this.  Until I arrived. the taxi man found it and there was an old outdoor lift. We couldn't use it so taxi man ran inside to get someone whilst I sat in the cold outside.  A man came and said "you didn't tell us you were coming" .  No, I just went to see my solicitor. I'm sick, too, of the inconvenience of planning my every move.

The lift was ghastly, old and rickety.  It 'spoke' of no care, respect or anything remotely welcoming to the disabled person. It was insulting.

The very notion of a 'back door entrance' for disabled people is disrespectful. It is inconvenient, usually adding stress upon stress, first in finding it, then in getting someone to open the door.

It is argued that some buildings are too old to enable wheelchair access through the front. I don't go with this one.  The fact is most places don't want to, as they see it, ruin the façade of the front of the building by putting a ramp or lift there. or its too expensive, so they say.  so what, equality means making your front entrance useable by everyone.  Equal means, all having the same access facilities, the front door!

In future I am going to refuse to go in the back entrance, and I'm going to make every fuss short of being arrested to voice my views. it's time we disabled people realised that we should not be 'grateful' for the scutty alley, the torrid corridors, the wait in the cold until little used back doors are unbolted, opened.

And why should I be polite....if I feel a second class citizen in these arrangements than that's how I feel. I don't like it . It's not 'equality', it's second best.

I'm not settling for back doors and feeling 'grateful' anymore.