Developing an independent life

by Mark Ahern

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My name is Mark Ahern and I live in Mullingar, Co. Westmeath. Independent living and the use of new technology have played a very significant role in my life. Independent living was an alien concept when I first heard about it, from a feisty female American wheelchair user who was determined to spread her message to Ireland. That was when I was approximately fifteen years old. I immediately realised that it could play an important role in my future and so it has proved to be. I have a disability called arthrogryposis multiplex congenital (AMC) which I’ve had since birth. I am unable to walk or even stand and have only very limited use of my hands. Up till then it had always seemed like an impossible dream to go to college or live on my own. After that, my future no longer seemed so dark or certain.

After I completed my Leaving Certificate, I was accepted for a Bachelor of Commerce Degree in UCD. Fortunately and thanks to a great extent to my parents, who campaigned on my behalf, the Midland Health Board provided funding for a personal assistant (PA) service with more limited funding coming from the Department of Education.

I was provided with 70 weekly hours of PA service, coordinated through the IWA in Dublin. that not only helped me to complete my degree, and then a Masters, but it also helped to me to experience real freedom and grow as a person. There are shops, restaurants and pubs on the campus and in a way it was like living in a town, rather than being part of the city. I stayed on campus from a Sunday evening to Friday and then went home at the weekend. One PA covered from Sunday evening to Tuesday evening and another took over until Friday morning.

As the campus would become largely deserted over the weekend, this never bothered me. During the week I could decide to go where I wanted without being answerable to anybody and could choose what would be made for dinner. I had a vibrant social life and I looked forward to each day—apart from the odd statistics lecture!

There were difficulties at times. For instance when a PA unexpectedly went sick. I was a long way from home; I couldn’t expect my parents to drop everything and come to cover gaps—and they had their own lives to lead anyway. Therefore, I built up a back-up system of friends and extended family. Although they weren’t able to help over extended periods, they did help in emergency situations.

It was during my time at college that I also began to think about how I would manage when I hopefully found employment in the future. I experimented with ‘Dragon Dictate’ at the time—a system which types from speech. However, it was one of the earliest versions and I never grew fond of it, due to the mistakes it would make. This was many years ago and I’d imagine newer versions have greatly improved.

It was a different computer programme I came across which was to have a much bigger impact—an on-screen keyboard. At the time it was novel and I immediately knew it would be a great help to me. It made it far easier to type. These days on-screen keyboards come as standard on the latest Windows, and I use them every day.

After I completed college I returned to live in Mullingar with my parents. The independent living service I had been getting ended with college. After a few months I applied for PA hours from both the local Irish Wheelchair Association and the Centre for Independent Living. I was given 25 hours, which was a great help to me in building for the future. I was able to get up when I wanted to, go out for a walk and it helped me to look through papers when I was searching for employment. It only took a few weeks to find a PA and we got on so well together that she still works with me now.

The next major development in my life was when I was offered a permanent job as a Clerical Officer in Westmeath County Council. Before that, I had a part-time job working for the local Arts Centre, but this was what I really wanted—a fulltime job.
Independent living played a crucial role in helping me fulfil my ambition. It simply would not have been possible to work fulltime without it. Thanks to the services provided I could get into work, in time, and have the necessary toilet breaks and lunchtime.

I’ve now been working with Westmeath County Council for nearly ten years and I hope to continue doing so for many years to come. Apart from the important salary, it has also provided me with camaraderie and a sense of purpose. It is my longer-term goal to get a management position which I feel that I would easily have had the ability to do.

Recently I have taken independent living to the next level. About three years ago, taking advantage of the slump in house prices, I purchased my first home. It was situated in the ideal location for me—near the town centre and close to my place of work. I had spent a lot of time looking for a house in the correct location as I knew it would make a huge difference if I was able to get into town and to my place of work in my wheelchair- Many modifications were needed to the house—doors widened, a downstairs toilet added and ramps in various locations. One of the most interesting innovations was the use of swing doors so that I could go from room to room without assistance.

Fortunately I was able to apply for a grant from the Council, which helped cover some (but not all) of the costs involved. I considered it to be great personal achievement to purchase and modify a house appropriately for my needs.

Concurrent with the building works, I applied for an increased independent living service. The process had changed significantly from the last time I had applied for hours. This time I had to send in my form to a clearing house committee, rather than the individual companies which provided the service. Overall, however, I thought that this method was superior to the previous way, because it felt that I was being dealt with in a coordinated fashion.

I got enough hours to stay in my house for four nights of the week. Considering the recession in Ireland, I was pleased with that result. In the future I intend applying for more assistance, so that I can stay in my house fulltime—and become fully independent. I’m also looking into getting environmental controls put into my house, such as an automatic front door so that I will be able to spend some time on my own at the weekends, and require fewer PA hours.

It was great feeling to finally move in and I have thoroughly enjoyed my time since then. It is fantastic to have my own bit of space, be able to invite friends over to visit and even not have to argue with someone over what to watch on TV! Sometimes it’s the small things that matter most.

Currently I have two PAs who help me to live independently. One does the mornings and the lunch hour, and the other one does from 5pm each evening until the morning. And that system has worked out well so far.

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