'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.