The experience of independent living

The following piece is an extract from a speech made by chairperson of Independent People with Disabilities (IPwD ), Mark Ahern, at the group’s recent AGM:

Independent living was an alien concept when I first heard about it when I was approximately 15 years old, from a feisty American wheelchair user who was determined to spread her message to Ireland.

I immediately realised that it could play an important role in my future. I have a disability called Arthrogryposis Multiplex Congenita which I’ve had since birth. I am unable to walk or even stand and have only very limited use of my hands. Up til then it had always seemed like an impossible dream to go to college or live on my own.

My future no longer seemed so dark or uncertain.

After I completed my Leaving Certificate, I was accepted for a Bachelor of Commerce Degree in UCD. I was provided with 70 hours of a PA service co-ordinated through the IWA in Dublin and it 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. I stayed on campus from a Sunday evening to Friday and then went home at the weekend. 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 so I could not depend on my parents to show up to cover gaps. I built up a back-up system of friends and extended family who could help in emergency situations.

After college I returned to live in Mullingar with my parents. The service I had been getting ended with college. After a few months I applied for PA hours from the local Irish Wheelchair Association and Centre for Independent Living. I was given 25 hours, which was a great help and helped me to build 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 that she still works with me to this day. The next major development was when I was offered a permanent job as a clerical officer in Westmeath County Council.

Independent living played a crucial role in helping me fulfill my ambition. It simply would not have been possible to work full-time without it. Thanks to the services provided I could make it in time, have the necessary toilet breaks, and have my lunch.

I’ve now been working with Westmeath County Council for over eight years and hope to continue doing so for many years to come. Apart from the important salary, it has provided camaraderie and a sense of purpose. It is my longer term goal to get a management position.

Recently I have taken independent living to the next level. About a year and a half ago I purchased my first home. It was in an ideal location near the town centre and close to my place of work. I knew it would make a huge difference if I was able to get to my place of work in my wheelchair. However many modifications had to be made such as widening doors, [installing] a downstairs toilet, and ramps in various locations.

A grant from the council helped cover some but not all of the costs. I considered it a great personal achievement to purchase and modify a house appropriately for my needs.

I also applied for an increased independent living service. I got enough hours to stay in my house for four nights of the week. Considering the recession, I was pleased with the result. I intend to apply for more assistance so that I can stay all week in my house and become fully independent. I’m also looking into getting environmental controls put in such as an automatic front door so that I will be able to spend some of the time on my own at the weekends.

It is fantastic to have my own bit of space, be able to invite friends over, and not have to argue 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 while the other one does from 5pm each evening till the other one arrives. It is a system that has worked out so far to date. I’m now really looking forward to being able to go up and down my garden during the hopefully hot summer months.

For more information on Independent People with Disabilities visit www.independentpwd.ie, call (090 ) 6470044 or email [email protected].

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