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HELLO, MY NAME is Michael McCabe. I have a full-time job, a wife who works full-time and we have a mortgage to pay. Like everyone else, it’s a struggle to make ends meet these days.
I choose when to get up in the morning, when I have meetings and how I get there, when I eat, when I sleep, and in between all of that, I make time to manage my finances and maintain my house. You’re probably thinking to yourself “So do I”. The only difference with me is that I do all of this with the help of a Personal Assistant (PA). I’m a leader (that’s the term). This means that I take the lead, I’m in control, I make the choices and I take responsibility for those choices, and that is what makes me independent. People take independence for granted, and with my Personal Assistant, I can too.
Why do I have a Personal Assistant, I hear you ask? Well I was born with Cerebral Palsy which affects the functioning of my legs, arms, lungs and speech and I use a powered wheelchair. Cerebral Palsy doesn’t affect my mind, so, like most people I have the ability to learn and absorb information, to analyse situations and use emotional and logical reasoning to determine my choices and to contribute my ideas, opinions and views to the world.
Jump back 20 years, and my life was very different. While I was independent minded, my life revolved around the availability of my brother, sister and friends. Everyday activities like eating, sleeping, going to meetings or socialising depended on when my family or friends were available to help me. I wasn’t in control, I had little choice in decisions about how my life should be run, and I was also taking away their freedom of choice. I was dependent and they were restricted.
Looking back even further to 40 years ago as a young adult, and although like most young people I liked to lead an active social life, I was still very dependent on my parents. I thought I was independent, but later I realised that when I had to rely on family and friends for every little thing, including lifting a glass to my mouth, that I wasn’t independent at all.
Throughout this culture of dependency, I continuously fought for the right to independence for myself and my peers.
In the early 90s my dreams began to become a reality. Along with several others, I founded the first Irish Centre for Independent Living (CIL). CIL is a Leader-led organisation which means it is led and managed by people with disabilities. CIL’s mantra is “Nothing About Us, Without Us”. Personal Assistance was introduced with the assistance of EU horizon funding and CIL piloted the first Personal Assistance programme in Ireland. A lot of research was undertaken to ensure that the Irish model didn’t repeat the mistakes of other countries and that the people with disabilities took the control and the responsibility for managing their Personal Assistants.
As a tax paying member of Irish society, I am equally affected by the changes in our direct and indirect taxation. As a commuter the cost of getting to and from work has increased enormously and my house is in negative equity. However, while I am not exactly jumping for joy, I am prepared and willing to play my part in restoring our economy.
The reductions in funding to service providers will probably result in a reduction in my Personal Assistance hours. My Personal Assistants have already suffered pay reductions and I am aware that nationally many Leaders have already lost Personal Assistance hours as far back as August of last year. Those leaders received letters informing them of the reductions in hours while many of the decision-makers embarked on their summer holidays. There was no consultation or re-assessment of needs involving the Leader planned.
Losing Personal Assistance hours means that I will lose some of my independence. This is like losing a part of my very being, and the dependency on my wife will cause a new imbalance in our relationship, as I only met and married my wife after I got Personal assistance. On the other hand I am probably one of the lucky ones due to the fact that my Assistants are core funded, which leads me to presume I will only lose some, and not all of my PA hours. Yet losing all Personal Assistant hours is the harsh reality for many, particularly those who are receiving assistance from Community Employment Programmes, despite the fact that many of these Leaders are receiving an already inadequate allocation of PA hours.
My job as a Community Employment Supervisor is also at risk with the cuts in the funding for Community Employment Schemes, which will result in the closure of many CE Schemes. Without the income from my employment I would find it very difficult to continue my voluntary work as Chairman of CIL and other community bodies, simply because I would not have the means to finance my transport and communication requirements. I am not alone in this. There are many people with disabilities currently earning a living that are also providing valuable community work on a voluntary basis, and stand to lose it all if the cuts to CE Schemes go ahead.
My worst case scenario is that I lose my PA hours and my job, which in turn would mean my wife would have give up her job, as I would be dependent on her. We would both have to live off the state and would not be able to pay our mortgage. If that was to happen, then including my three Personal Assistants, there would be five less taxpayers in this country, and that, to me, does not make economic sense.
Michael McCabe is the chair of the Centre for Independent Living.
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For God’s sake, when will ethical or moral responsibility come into play with this Government? The fat-cat senior public servants (including politicians) have no idea or compassion about what it is like to live with a disability. Many of them have advisers etc and they have the gall to deny people like this man some small assistance to improve the quality of his life. Shame!
Shame on them and shame on us for letting them deny a citizens liberty
Agree totally Christian! Michael – congratulations you are an inspiration to all of us. As for my feelings about the heartless b…ds who now unfortunately run this country – well I don’t think it’s printable. Minister for social Protection my ass. Minister for bullying and intimidation of the weak and vulnerable is nearer her title.
This situation is becoming typical of the govt. financial expertise, hit the most needy and avoid the real difficulties such as stop the monumental waste of money within the planning offices i.e. employing approx 20 planning officers in Leitrim. Does this seem ridiculous to anybody when there couldn’t have been 20 houses built in the whole county.
What a disgrace! Government needs to look after Dissability persons, old, and the young! That is what living Ina modern society is all about.
Good article. Sadly it will have little or no impact on those living in the ivory tower that is Leinster house. Best of luck Michael. I say luck because under the current regime that is what it will boil down to. All they look at is the numbers on the balance sheet and not at the human cost to the citizens of this country.
Michael Thank you for highlighting the recent cuts backs for people with disabilities in your column today.
Incredible story. As the responsibility may lie with the government to show show some moral and ethical fibre but how many will read this column and go about making a difference.
Will people go out and get involved with a charity? Will you make a donation? Will you protest against the government? Will provide alternative cuts so this man and his peers can have their basic human rights fulfilled?
Sad fact very few will, I probably won’t. That in my opinion is why the country is where it is, ‘me, myself and I’.
Stop,stop,stop. This injustice must stop. This Govenment is devoid of morals,ethics,empathy,and justice. How can a fellow human being be treated like this just like its another “everydaydecision”. Stop writing comments about the injustice our fellow human has to endure and do something. We have a doctor that is minister for health that has taken an oath to help human beings,yet this fellow human being faces an end of normal everyday life. He is on death row,awaiting a slow miserable,depressing demise from being a normal citizen of this state to a possibly homeless, jobless human. God how has this Country lost its justice and compassion for the thousands of people who struggle to survive day to day in this death row.
All we are asking for is fairness in treatment. PA wages and all other expenditure has been cut back cumulatively by 11% over the last 3 years. For example if the PA works on the Sunday it is now paid a time and a half rather than doubletime. Yet within the HSE, Sunday continues to be paid at doubletime. So the Minister for Health, Department of Health and HSE officials are all protected by the Croke Park agreement seem happy enough to implement cuts to those down the line. What is really rotten, is that at the top of the pyramid officials continue to end Celtic Tiger era salaries and pensions. Just have a look at http://www.leadersalliance.ie/#/our-treatment/4561006890 for some examples.
Well done Michael,it is great you highlighted your story,so many more like you. People seem to forget that a person with a disability has extra expenses that the able bodied does not have. We know what the cuts are about….
From all at Co Roscommon Disability Support Group Ltd
Democracy cannot exist without people with disabilities . When I was born with cerebral palsy I was kept alive not for my own sake, but because Ireland saw itself as a liberal Christian, democratic society. So Ireland wants to keep us alive and yet deny us the same freedom to live our lives the same as everyone. If Ireland wants disability on the cheap the policy would be that of the Third Reich. And we all know that led to the distruction of democracy and freedom for everyone. Liam Maguire , whose biography is entitled Rebel on Wheels pointed this out in 1977. Peter Moore
Michael, this article is a very clear highlighting of something I’ve been trying to point to myself: That government, both the present and previous one, is failing to provide a strategy to protect those most vulnerable to cuts.
Instead their (non) strategy is to make cuts where easiest and let other degradation happen naturally, rather than taking proactive steps to decide what gets protected and what gets hit.
see nationalhealthcare.ie they have conference end of march. protest outside. minister for health speaking. we need mega disruption folks. not passive roll over and take it
Hi Michael, well done on a brilliant article. It is extremely difficult for a non disabled person to quantify the barriers faced by people with disabilities, and in turn, how they are affected by budget cuts. Awareness here is key, both among politicians and wider society. Working against the disability sector is a historical legacy of the acceptance of institutionalisation, and sadly it appears we have moved on little as a society if we are now creating barriers that render people prisoners in their own home. If we remain silent on this we are as guilty as our elected representatives of moving backwards on this issue.
While I fully sympathise with your situation, the reality is that in some ways, you are, at the moment financially better off than a lot of other people. For instance with your car, you would be exempt from road tax and V.R.T., you would also be entitled to reclaim any vat you pay on fuel. While I admire your determination to maintain your independance and work for a living. I am sure you will admit that the amount of income tax you pay goes nowhere near paying for the cost of the services you are recieving at the moment.
So basically your tax should cover the cost of the support you receive?? By that rationale if you don’t pay tax you shouldn’t get anything. I’m really hoping that just doesn’t read as you intended.
I never said your tax should cover the cost of the support you recieve. What I did point out was ,that people with disabilities do recieve tax breaks that other people do not. A person with a primary medical cert. can put a brand new car on the road for less than €6000. They do not have to pay road tax, can reclaim all vat on fuel and do not pay tolls. Do you know of any other group of people who can do that? That is a huge saving on any families outgoings. They are also entitled to large grants for home improvements. Please note I used the word entitled. I do not begrudge them their entitlements but they are often forgotten when people are complaining about cuts in other areas.
Shame on you Kevin O’connor,i am sure people who get mobility grant’s would dearly love to swap their disability with you for the chance to walk,not to be able to do anything for ones self is a terrible infliction,you need to spend a day living as an non able body’d person doe’s and you would not be long changing you’r view’s .BB
this is also something which shocks me more and more and leaves me totally astonished really…does humanity, empathy, love and understanding and help for each other-just simply HUMAN SOCIAL skills not count at all anymore? How can someone sleep with so much money coming in that they dont know what to do with it and let people rot, give a monkeys about others….. it is sad sad sad and a shame!!! IT has to change!!!
Why shame on me Bernie Breen ? As you don’t know me, you have no idea of how able bodied I may or may not be. Can you guess how I know about those grants ? So get down off your high horse before you fall. Or are you another one of those people who think that no body should have a different opinion to you. Any thing I posted was a fact. What you posted was an opinion
By the way Bernie Breen, there is no such thing as a mobility grant. There is a mobility Allowance, and a Motorised Transport Grant. So maybe before you start shooting off your mouth, you should at least check that you know what you are talking about.
Well said Michael. Not only is this Government cutting funding to disability organisations which means less personal assistance hours effectively making some people prisoners in their own homes but to its absolute shame it hasn’t even ratified the UN Convention on the Rights of People with Disabilities. 106 countries have, Ireland hasn’t, why not? How long are we going to put up with allowing our Government treat our citizens with disabilities like this – its high time we said enough is enough! Reverse the cuts, ratify the Convention!! Gary Lee
We have one thing in Democracy, so it says, the right to free speech and protest.
there has been little here.
I am not talking of violence, i am talking about vigils, silent protests, marches and real disability awareness, look what happened in London recently when all the disabled people and those that loved them, stopped the traffic.
what is wrong with the irish that they will stand by and see this happening all around them?
anyone up for a protest, i shall provide a mobility scooter and the person on it – myself!
our only son was diagnosed with a terminal condition when he was 9 years old and lived up to the age of 22,when he passed away suddenly almost 2 years ago.so i applied for the social welfare bereavement grant to help with the funeral costs,and as you imagine to my utter disbelief when we received a letter back from the department refusing it,it is around e850,and the reason we were given was my son had no social contributions even though he couldnt work because of his condition,so its not only in life that people with disabilities are been discriminated against but its also and the end of life.while the money is a factor my real point in this post is:do all people with disabilities,that cannot work through no fault of their own,be disallowed this payment because they cant take up paid employment?
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