I employed my first assistant in 1984, shortly after Liam Maguire’s death. I was 33 years of age, and Liam was such a huge figure in the disability rights movement of the time and had had such an influence on me I decided a book about his life should be written. I made preliminary inquiries hoping, to some extent, someone else was doing the same thing. Upon discovering nobody was, I proceeded in pressing ahead. In doing this I was helped by my great friend at time, Paddy Byrne. Paddy had giving many years of voluntary service to the Irish Wheelchair Association and by then was employed as its PRO.
It was Paddy who decided that the project required a budget of £5,000 (I was so naïve at the time I hadn’t even considered the question of cost). The IWA gave me a grant of £1,000. We also applied for funds to the trade unions and Aer Lingus, where Liam was employed since just before his accident. I got no funding from Aer Lingus or the trade unions. A year or so later I got two free tickets to New York, which enabled me to fly on to the Bahamas where Disabled Peoples’ International were holding a convention. People with disabilities from all over the world, who knew Maguire, were going to be there. If I was going to have any chance of covering the part Liam played in the international disability rights movement I knew I had to get to that convention.
We advertised for a secretary in the evening newspapers and eventually I took on Brenda Kelly who lived very close by, although I don’t remember that being an important factor. I paid Brenda £2 an hour and we came to an arrangement whereby I paid her £5 every time she drove me to an interview. Most of Liam’s family and associates lived on the south side of the city. Apart from the £1,000 I got from the IWA, most of the funds for the project came from my own resources. In 1981 I was knocked off my tricycle in a road accident and used the compensation from that to cover expenses.
Liam Maguire’s biography was published in 1990, which happens to be the year a group of eight people with disabilities came together to talk about independent living. To be honest it was becoming nothing more than a talking shop until Martin Naughton announced that he had secured funding from the EU’s Horizon programme for a two year pilot project that create and deliver a service not heretofore available in Ireland. Thus the Incare project, which later incorporated Operation Get Out (which took people out of institutions and set them up in suitable apartments with adequate pa cover) began . The Horizon funding ran out in 1994, and the government gave the management of the PA service over to the IWA
Between 1992 and 1994 when CIL managed the PA service and organized the training in conjunction with FAS most the PAs were young people, not long out of school. It was much the same in first years after IWA had the management, indeed in this period one PA, who worked for me part time was just 16, and not yet finished his secondary education. He is one of the best personal assistants I’ve had.
In today’s environment I don’t see the HSE granting enough hours to a young person to write a book. Recently a young woman wrote on her Facebook page that she would have went to University had she been given adequate supports. The Irish authorities need to recognize independent Living is as much about personal development as the bare necessities of life.
Recently, we are hearing more and more that the HSE are moving towards demanding that nobody can be employed as a PA without a qualification in social care (Fetac Level 5) with no mention of independent living or the right of people with disabilities to decide their own lifestyle. If I am ever forced to employ somebody with a care qualification I will make as much trouble as I can. Firstly I would point out to any HSE official that some services they have direct responsibility for are poor examples of good practice Áras Attracta (which first hit our screens in 2014) and currently the Grace story being two appalling situations that came into the public domain. Qualified carers often think they have the right to tell you how to live your life.
Ultimately we must have the courage to bite the hand that feeds us if we want true independent living to survive in Ireland.