Mr. Anthony Morris:

It is estimated 1.3 billion people in the world have a disability, or 16% of its population, and 70% of those people have an invisible disease. I am one of those people. You could look at me today and think, “There is nothing wrong with this guy”. I played football for Kerry. I captained my county and played at every grade. I have a first class honours degree and masters as a civil engineer. One month after graduating, a virus attacked the wall of my heart and started my story with Lyme disease. I was misdiagnosed for nine years. I have seen every specialist to do with the human body. You knock on one door and a doctor only deals with one thing and knock on another and that person only deals with something else. Then you go back to your GP. However, nobody is taking an aerial view and asking why is this 32 year old man falling off a cliff? I have a 17 year old daughter who has never seen me well. I have not slept a night in 17 years. I am in chronic pain all day, every day. I barely made it here today. I am awake since 1 a.m. It was 50:50 whether I would make it here today but I promised this woman beside me I would be here.

A few things have jumped out here today. People are thanking us for coming. We are not saying who is the worst disability here. We are not fighting over that. There is a big cost to everyone here. It is not just that we are off work and it is not financial. I will be bedridden for three or four days. Someone will have to feed me with a spoon tomorrow or the day after. I will not be able to shower.

I will not be able to find my way around; I will be staggering. If my partner and I are out and about, I will ask how to get here or there and she will guide me. If I did not have free travel, I would not see my daughter. She lives in Kildare. That was one of the consequences. It was so brutal and harrowing, the relationship broke up. I had to sell my family home to get lifesaving treatment in Washington D.C. By the time I went there, I was in a wheelchair and could not walk or talk.

I wrote these notes today. I am incredibly proud to be here before the committee. I have to wear glasses. Sometimes I cannot even see my food. I will not be able to read the notes or put them together. It is quite emotional. We are all terrified to speak out. Many people here have a lot to offer. I do not know any of these people. It is my first time ever being here. It is difficult for committee members to be sitting there. As an engineer, I could see things from the contractor's point of view and the client's point of view and try to get the best outcome. Being exceptionally fit and strong, I thought I would live forever. All of a sudden, I was bed-bound for nine years and had to go to America to save my life. How can members have an appreciation of what it is like for us?

We had lunch outside. The lady alongside me is visually impaired and could not see the sandwiches in front of her. We are talking about trying to make change, but that happened just outside the door. We are supposed to be listening to and helping each other. We can say we spoke to these people and they did nothing but you are only as good as the people that are feeding you. There are people here who might not be alive in a couple of months' time. I have an incurable disease now, because of neglect. My consultant in Washington D.C. said I would be better off if I had AIDS or cancer because he could have cured them at the time. Remission is my best target now. We are constantly coming up against poverty, wearing comfortable clothes, being in bed and trying to stay warm. We use food vouchers to feed ourselves. When people see us out and about, that is a good day. They do not see us when we are really sick at home.

I wrote down a few things about culture, accountability, attitude and engagement with the experts who are here. I will not name names but one person said after hearing the discussion: "I'm afraid to say what I'm going to say because I'm going to get in trouble with the HSE." If I was on the members' side, I would bellow to get the HSE into trouble.

We go knocking on doors looking for help. We go to people who have a duty of care to us. Kathy has a sick child. All these people have a duty of care. None of us wanted to be sick. I did not sign up to have Lyme disease and be sick and curtailed for the rest of my life. When we look for help, we knock on the door and, bang, we are told: "You are not that sick. Shake yourself off. Get back to work." The stuff that is going on is crazy. You cannot be sick enough to get a disabled badge or an arm or a leg. Holy Jesus. We are in one of the richest countries in the world.

That is it. I wish members well.