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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