Oireachtas Joint and Select Committees

Thursday, 7 October 2021

Joint Oireachtas Committee on Disability Matters

Participation of People with Disabilities in Political, Cultural, Community and Public Life: Discussion (Resumed)

Mr. Gerry Kerr:

I thank the Chairman, as well as Senator Higgins and Deputies Murnane O'Connor and Cairns. I would love to have a pen and paper I could write with just to help me remember all these points. Instead of that, I will finish off with three images that may answer some of the questions of members or address their concerns.

There are three people. The first is a woman with sight loss living alone in a small bedsit. What would change her life is a half hour of home help per week, a person to read her mail, check several things for her and help her out.

The second vision I have is of a young woman with sight loss who was very much socially isolated. Culture helped her in the sense that an organisation with which I am involved started a project called Sightless Cinema. It allowed people with visual impairments to make up their own radio dramas with the help of a facilitator, edit them and put them on in a cinema in the dark with full sound. They finished off by having a small performance.

That would be financed through the public participation networks, PPNs, and local authorities. I hope Senator Higgins does not mind me mentioning her father starting a necklace of community theatres around the country. They were the organisations that came to help. They changed that person's life from a cultural point of view.

My final point is that a young politician, a councillor, who I know, like many members of the committee, is really impassioned by what he wants to do. He has to survive on €17,000 a year as a local councillor. He will not have a chance of ever getting a house, a stable income, a loan from a bank or a future. I know it is a lot to ask and that from the beginning of the State, we have had volunteer councillors, but if someone is a full-time councillor who has gone into politics as a profession, which is a noble profession, there should be a proper, decent wage. If people want to do it part-time, then something could be worked out.

I thank the Chair for indulging me. I am involved in an organisation which, 38 years ago, started trying to bring about cures for people with visual disabilities. About 30 years ago, we funded a project in Trinity which discovered the first genes involved in someone like me going blind. After 30 years of funding and campaigning, we are at a stage where there is a drug called Luxturna which can be injected into the eyes of a child, which will replace the genes and will maintain a person's sight for life. We need systemic medical changes at various hospitals. This goes to Senator Higgins' point about governance and ownership. Various hospitals operate as individual silos without any national register or database with which we can establish clinical trials or a cost-benefit analysis of which drugs to reinforce.