My Life, My Way

Introduction

I’m a professional disabled man, living in Dublin, brought up by both my parents to be as independent as possible. I have always been given the power and freedom to make my own choices in my life, whatever they may be. No matter whether those choices resulted in good or bad outcomes, I was encouraged to learn as much as I could, and always speak my mind and go for what I believed would benefit me. Two examples of freedom of choice I was given from a very young age, were around my impairments. I’m totally blind and a Wheelchair user. When I was 6 years old, it was suggested that I used artificial eyes for appearance, as I have no Eyeball. After a few days I asked my parents and the medical profession would they enable me to see. I’m afraid not was the reply. Well I said, I’d like to give them back. They have no place in my Head. The medical people were horrified that I was allowed to speak freely. My parents on the other hand replied, it’s Brian’s decision and choice to do as he wishes. I haven’t looked back since.

I’m a Wheelchair user by choice too. I have a physical impairment called Arthrogryposis, or AMC for short. This affects both my arms and legs; in they have limited movement and don’t straighten fully. Roughly 3 in 10,000 babies are born with this condition. The medical profession told my parents I would never walk and suggested a Wheelchair. Once again, this decision to use a Wheelchair was made by me, when I was 9. After trying several methods of mobility, a guy I knew from school had a Wheelchair. I saw with my own eyes how much easier it was for him getting around in comparison to what I had tried. There was also the fun element too, I could picture the speed he could go at, and the races we could have around the school yard. Home I went and asked for a Wheelchair. Neither a Wheelchair nor the Money was readily available. My parents had 4 other children to consider and needed to work a lot of extra hours to get the cash together to buy one. Then, you couldn’t just go out and buy a Wheelchair in 1980. There were rolls of red tape, assessments done by people who had no idea how much they were standing in my way with their bureaucratic claptrap, which meant that the process of getting a Wheelchair took 9 months. I later learned that a baby could be made in the same length of time. Eventually, my new wheels came, and I could move about freely and hang out with my friends in the same way as my siblings did. I had several races too in the school yard. One time the long-awaited said Wheelchair came home in tatters. Needless to say, I got the mother and father of bollickings.

Live your life, be free!
That was always the message given to me by my family. The school I went too was a long distance from my home, as I had to attend a particular school for the blind, located on the other side of the city from where I lived. I decided that I’d like to stay in as a border, from Monday to Friday, and come home on weekends. Once again, this decision by me was met in much the same way as my eyes and wheelchair was. It’s your call Brian, was my parent’s response. I tried it for a year and hated it. It was nothing to do with the school or the people, but I began to realise that I was missing out on the goings on with my friends at home. I would only see them on weekends, and a lot happened from a Monday to a Friday. I decided to reverse my decision to stay in school and come home every day. Putting up with the long distance, in return for banter with my friends. I learned a lot from this one and was very glad I tried it.

Man, in motion!
From school, I chose to go to university, making my own choices all the way. It brought challenges in terms of me getting about, with the physical campus. I decided it was time to graduate to an electric wheelchair, giving me greater power than I already had. University College Dublin (UCD) through its access and inclusion scheme, supported me in this decision and provided the funds needed to buy the chair. Thankfully this process took a lot shorter than the 9 month one I spoke about earlier.

I also decided that I wanted to make my own way about the campus in as much as I could. The mobility officer from the National Council for the blind, had never thought anyone blind and using a Wheelchair before. She took on the challenge like a duck to water. We got a system together that worked for both of us, and I was able to get about like anyone else could.

While in university I was introduced to the notion of a Personal Assistant. The University gained access to two people through a CE scheme. These people were employed to assist students with particular tasks from personal care, getting around on campus and assisting with note taking. They were not Personal Assistants in the true sense of the word but were shared among all students who required their help. On a personal level, they increased my independence as they could read material to me and assist me on and off buses when I arrived at and departed from the college campus. Like us all, these 2 people had different personalities. One of which I clicked with as we shared much the same interests and we became good friends, who I am still in touch with. The other had a different personality to me, while we got on, we were not on a similar wavelength.

Taking the next Step!
I took the natural progression and moved from University into the world of employment. I always believe that it’s your general attitude that takes you places, as well as my wheels in my case. I was brought up to have a strong work ethic and had various summer jobs. I applied to a wide range of companies and was successful in getting employment in Aerlingus. A short time later I got married and was lucky to be in a position to buy a house, in an area which had the facilities that were important in my life. Bus stops, shops and pubs.

A state of independence!
In time, my wife and I decided we’d like to start a family. My rule from the outset was that if this was going to happen, I had to play my part. I had a role and a responsibility to fulfil, and that was the deal. I decided to set about applying for a Personal assistant. A Personal Assistant is someone who can support a disabled person to increase their independence, by having control of their own lives, and having the freedom to make their own choices. From enabling disabled people to hold down a job by helping in the workplace, assisting with personal care, participating in community and social events, and assisting a disabled person in their family. All of the above can be achieved through direction from the disabled person, to their |Personal Assistant, or (PA)

Not only that, as the name suggests, these tasks are personal to the individual they are assisting. My requirements will be completely different to another person’s. To take it a step further, the assistant concerned is personal to the individual they are assisting. It is a one on one relationship. In my case, I have 4 Personal Assistants, to cover my requirements. Like the music I listen too, they have been carefully handpicked by me. They match my personality, interests and are people who I believe have the qualities to assist me to achieve a more independent life. By being in the right place, at the right time, they give me maximum independence. They are an extension of my Eyes, Arms and Legs. Unlike my artificial eyes, I have no wish to hand them back any time soon. They assist me with visual and physical tasks that I cannot do for myself, making me the independent person I choose to be.

Sadly, having a PA to assist a disable person is not a right at present. It was a pilot scheme started in the 1990s and could be cut at any time. In my situation it took 3 years to obtain PA hours. I had only granted them as another individual died. In March last year, Ireland formally brought in the United Nation Convention on the rights of people with disabilities. This states that disabled people have the right to live and participate in their community by having access to a range of supports, including Personal Assistants. Yet, not every disable person is able to achieve this fundamental right due to a lack of a personal assistant. At a basic level, having a Personal Assistant, is the difference between existing and living. For me, I’m a father to 2 children. I could not have taken on this role if I didn’t have a PA.

In Ireland the Personal Assistant service needs to be incorporated into legislation to ensure that I can continue to play my part as a father. If this service was taken away from me, I would be disabled, as it would become a barrier to me fulfilling my responsibility as a father and my wish to be an independent person.

After a lot of hard work from Independent Living Movement Ireland (ILMI), this week, a motion is being put forward in the Irish Parliament about the right to Personal Assistants for Disabled people in Ireland. This will request approval to bring in a commissioner for independent living for disabled people. It’s the first step on the road to securing a Personal Assistant as a right. It’s equality in society, that removes barriers it contains, which makes me disabled. All I want is equality, by securing the provision of a service that meets my rights.

Conclusion
I have been blessed by the approach my parents took in allowing me to fulfil my wish to be as independent in life as possible. By giving me freedom and choice to make my own decision, and control my life, this gave me the hunger and desire to obtain and maintain my Personal Assistant service that I have today. I’m in a position where I can manage my own life, through their assistance, enabling me to carry out the same tasks that family and friends can do in their lives. I was always encouraged to engage in any decision around my life, so I will be present in Parliament this week, when this monumental motion is up for debate.