Séamus Greene is Director of the National Parents and Siblings Alliance. Thirty years ago his daughter was born with a severe disability which it was difficult even to categorise. Little did he know that she was to become the centre of his and his wife’s life, and how much she would influence their attitudes, their political loyalties, and even how he earns his living.
My daughter was born on Wednesday 19 February 1975. She was two weeks premature, and was born in the same labour ward, and almost at the same time, as the daughter of a close friend. Apart from that, there was nothing unusual about the birth. There was no indication that she was going to be the centre of our lives, and that thirty years later she would influence our attitudes, our political loyalties, and even how I earn my living. At that time, the only unusual thing about her was her Mohican hairstyle: a strip of hair standing up along the middle of her otherwise totally bald head.
But, whether we liked it or not, she was going to have a huge influence on the family: my wife Mo, our other two children and me. She was also going to influence how we judged the State’s attitude to disability and, by extension, to the many areas of need and deprivation which are virtually ignored by the slightly limping but still sleek Celtic Tiger.
But back to the beginning! She was a baby who could never feed well. At first, we thought she had caught a cold in the hospital and that this made her choke on her bottle. We tried feeding her slowly, and found that it worked to some extent, but then every feeding session took huge amounts of time. It never dawned on us that she simply could not get her head around the idea of sucking and swallowing at the same time.
We approached many doctors, who were always sympathetic, but gave us little help. Finally, when she was six months old, for the first time we decided to take a stand, insisting that we wanted more than sympathy. We took her to our family doctor, and demanded to see a specialist.
Our sympathetic and good humoured doctor willingly sent us to a specialist, who checked her out, prescribed stuff which certainly helped her to eat better, and told us to come back when she was a year old. That was all.
So, we waited until she was a year old. During that time – in fact, from when she was two months old until she was twenty months old – she woke most nights for anything up to four hours. Otherwise, apart from a tendency to live in a world of her own and a reluctance to move around much, nothing really concerned us.
Then we brought her back to the specialist. He took her into the hospital for three days. On the third day, we were invited to his office to hear the verdict. He began by saying, ‘It’s as we suspected’. I found this very confusing because, whoever was included in the ‘we’, it wasn’t Mo or I.
He continued talking as if we understood what he was saying. Eventually, I began to put two and two together and, interrupting him, asked if she was retarded. You must remember that this was twenty-nine years ago, and I had not kept up to date with political correctness in the use of language in this area.
This failing on my part was soon to be corrected, however. The doctor instantly changed his discourse into a lecture on the fact that we didn’t use such terms those days, and that it was now called mental handicap. I think this was the moment when I finally and irrevocably decided that political correctness for the sake of political correctness was a ludicrous concept, and definitely not for me.
While my subconscious came to that conclusion, however, my conscious had more immediate issues to deal with. For instance, how would I handle this new situation? How was Mo going to handle it? What was the future going to be like? Or maybe none of these struck me at the time. Maybe these were issues which arose later, and have somehow become jumbled in my mind as being part of my initial reaction.
What I’m sure I didn’t do was what I should have done: to give the specialist a lecture on how to deal with people at such a sensitive time in their lives. Many times since then, I have thought about doing this, but I still haven’t managed to take the bull by the horns, or the service provider by the scruff of the neck.
In the long run, the specialist turned out to be a kindly man, although we were always a little surprised that someone in his profession would have had such a huge dislike of crying babies. He would frequently order his nurses to quieten the children in his waiting room.
Insensitivity and arrogance
The news given to us that day began a new phase in our lives, when we would be essentially lesser citizens, charity cases. On many occasions, we’ve had to face dreadfully patronizing, insensitive arrogance from those who were employed to provide a service for us, and were well paid for doing it. For instance, there was the time when I faced a doctor across our daughter’s bed in the Intensive Care Unit, and was told, almost casually, that she would probably die. She didn’t!
Then, there was the occasion when we tried to point out that the school we were being offered for her was outside our area, and that the local one would be a better idea for all of us. In response, we were told that we had a choice between that school or no school at all. There was also the constant fear that she would be expelled from the service she was in. Looking back, we wonder why no one thought to tell us that expulsion was not an option.
As she grew up, there were many moments of worry, frustration and anger for us, as we tried to handle someone who was often too hot to handle. On endless occasions, she gave us master classes in challenging behaviour, that is, in having tantrums. Coming from a family with very little athletic ability, we were amazed – and embarrassed by her talent at regularly making contact with the bus driver’s head when she sent her shoes flying around the bus.
The value of respect
Before finishing, I must point out that there were also professionals working in her units who recognized that to help our daughter they had to respect us and to work with us for her benefit. Despite the bad experiences we’ve had, it was these people who restored our confidence in the helping professions, by proving that respect for those they serve has not died.
It is especially because of these people that today, at the age of thirty, my daughter is really a very nice person.
This article first appeared in The Messenger (September 2005), a publication of the Irish Jesuits.