I was with my friends one evening when I felt the familiar pit begin to swell in my stomach. We were waiting for our dinner before heading out to a karaoke bar a few minutes away. To pass the time, we were talking, and the topic turned to the familiar albatross circling above our heads: our lives post Trinity and how we will spend them. One of my friends started talking: “I might go to Australia after I’m done. The job that I have is nice but…”.
I nodded politely and bit my lip. When I was asked, I said that I’d like to stay here, probably, or spend some time in the Gaeltacht. Nothing too crazy. I polished this off with a well-timed laugh, and the conversation drifted to another topic. Going back on the Luas that evening, I’m confronted by the very same overwhelming question. What exactly will I do with my life? Unlike other people, however, I have certain things to take into account.
On account of my disability, I rely on my parents to get me dressed, help me shower, and help me go to the bathroom, among other things. More often than not, I don’t have someone – say, a personal assistant – to bring me to the bathroom, which means I usually have to hold it in. When I’m in college I have a personal assistant (PA), paid for by the College Disability service. So far it’s a system that seems to work.
That system has cracks, however. While I do have a personal assistant in College, I have no such thing at home or during the holidays. This means that if I want to go out, I have to either go out alone or with one of my parents. Obviously, I cannot expect my parents to accompany me to ever single function I want to attend, nor do I want them to. I feel guilty that I have to ask my friends for help, because part of me knows that it’s not their job and they shouldn’t have to do it, because they’re not my personal assistants. I do know that my peers are happy to assist me, but I can’t stop feeling like once my friends help me, the dynamic changes, and we’re no longer equals. They have their own lives and I don’t want to infringe on that. Because of this, I only go out for short engagements simply because there’s less chance of me getting caught and risking a trip to the bathroom.
Because of this, I spent most of my summer behind my computer screen. I went out occasionally, for a few hours a few times a month. I wanted to hold down a part-time job or something, like all of my friends. I wanted to volunteer. I wanted to be like everyone else. I knew I couldn’t go into a job from 9 to 5 and not go to the bathroom. Realistically I couldn’t refrain from drinking something for all that time. What if I needed something out of my bag? I couldn’t continuously ask strangers. Thus, I resigned myself to spending my days on my computer, learning Japanese and writing short stories.
“‘Why didn’t you just apply for a PA?’ I hear you ask. Unfortunately, the process is
not as simple as that.”
‘Why didn’t you just apply for a PA?’ I hear you ask. Unfortunately, the process is not as simple as that. Trying to find the right person is a task all to itself. My mum and I were being constantly redirected to different people, only to be told: “No, X is the person in charge of that.” When we finally did get the right person, there was always a problem. They were on holiday, or in a meeting, or simply not in the office. A few days ago, we finally got a call. I was told that they had no funding for PAs, that they had never had funding for PAs and had never done anything like that. They did have home care hours, but therein lies the catch: home care. It meant I couldn’t go out to work, couldn’t volunteer and certainly couldn’t go out to see my mates and have a couple of drinks.
Now that I’m back at college and heading into my final year, the existential dread has worsened. For all its faults, College has not let me down in regard to accessing a PA, giving me as many hours as I need. I am acutely aware, however, that College does not reflect the real world. I use around three PA hours a day, but the average PA user on the HSE gets 43 minutes – enough time to have a shower and eat breakfast, maybe, but not much else.
The zeitgeist mentality of my peers seems to be that as students we can do anything, go to that foreign country, do that course. The world is our oyster. I feel restricted and trapped; I feel that I cannot move away from home or spend time abroad. Worst of all, I feel that I cannot pursue my dreams. When I was told that there were no funding for PA hours, I looked at the manga panel I have framed on my desk, a symbol of my life-long dream to go to Japan, and I almost broke it to punish my own arrogance. How stupid was I to think that I could actually go to Japan?
“What will happen to me when my parents die?”
I worry about further down the line. What will happen to me when my parents die? I have read newspaper articles on young disabled people who are shuttled off to nursing homes because the State cut their support and their parents can’t look after them. I assumed that that couldn’t happen to me, because I was going to get a job and a PA and do things with my life. Now I realise that I’m not so special and that I could end up there just as easily as someone else. I always feel that I am Ross, the wheelchair user, not Ross, the human being who just wants to be like his friends. My final year in Trinity is thus bittersweet. Whilst I am looking forward to launching into the new academic year, I am consumed with uncertainty at what awaits me at its end. Will it be a commencement, or a cessation?