All God’s children
A letter written to a Mayo newspaper over 40 years ago was the inspiration for the vast range of innovative services which mentally disabled children throughout the county enjoy today.
In his wildest dreams Johnny Mee could not have envisaged the revolutionary effect his letter to the Connaught Telegraph would have on the whole perspective of such mental disability.
Forty years ago no service of any kind was available in the county to special children. Few cared. Children with mental handicap were hidden from the public, some a source of embarrassment to their parents. It was a taboo subject, shrouded in ignorance and discrimination. Many of those who went to school suffered the taunts of other children. Teachers were not equipped to deal with them. Some tried to beat lessons into them.
Today, an unprecedented range of services is provided for those children. The Association of Parents and Friends of Mentally Handicapped Children, to which the letter written by Johnny Mee in January 1966 gave rise, has grown and blossomed into a mammoth, caring organisation under the Western Care Association. Shame is no longer an appendage to a mentally disabled child. People talk openly about their special children. Parents freely swop information.
It was all so different when Mary Mee was born to Johnny and Mary Mee in the 1960s. Her parents knew from the beginning that Mary was not developing as quickly as other children. In all the little milestones by which they are judged she was behind. She did not walk until she was two, and that was a cause of some celebration by the family.
The Mees’ concern for their daughter grew when she approached school-going age. Inspired by a television talk by Dr Barbara Stokes, an expert in that field, Johnny had that pioneering letter published in the newspaper where he worked, calling for a meeting of interested people to form an association of parents and friends of mentally handicapped children.
“I felt it was time an awareness of the extent of the problem in the county was created,” said Johnny. A lot of children were sent to special centres in Cork or Dublin simply because there was no place in Mayo for them. That was a great heartbreak for parents, parting with them after Christmas and summer. The essential bonding between mother and child was being broken.
“Forty years ago only the elite had cars. You had to go to Dublin or wherever on the train. Imagine a person from, say, Belmullet, or indeed anywhere, trying to get to Dublin with a son or daughter, having to leave them and return home.”
Following the publication of the letter, Johnny received two phone calls, one from Tom Fallon, a native of Co Longford, who was manager of Hibernian Insurance in Castlebar, the other from Michael Joe Egan, a solicitor in the town. They called a meeting expecting no more than a couple of dozen people. Almost a hundred turned up. It was estimated there were about 700 children in the county with varying degrees of mental handicap.
“There was a great deal of ignorance and prejudice surrounding people who had mental disability,” said Johnny. “Some parents had a certain pride and were embarrassed to let others know they had a mentally retarded child. In many cases those children were kept at home. Some were never sent to school.”
He recalled Tom Fallon telling of a doctor making a sick call in a rural parish in the county. The patient was past childbearing age and noticing what he thought was a baby in a cot, the doctor asked what age was the child. He was told 12 or 13. The child was vomiting and severely handicapped. The doctor treated the child for the illness and had a rotating bed, which prevents bedsores, provided for her.
Following that initial meeting members of the committee established similar committees all round the county. When he spoke of his own daughter, people opened up to Johnny as if a weight had been lifted off them.
“I have to say the groundswell of support we got from the people of Mayo was quite extraordinary. Once the lid had been lifted off it, once that veil of pride and prejudice had been torn to one side, people opened up their hearts and their minds and they rallied round the Association, later to become Western Care Association. There is an old saying that a trouble shared is a trouble halved.”
Not long after their formation, a school was opened in St Patrick’s old National School in Castlebar. They needed a complement of 28 pupils in order to be recognised by the Department. Only 27 turned up, one short of the required number. One girl on the list had not made it.
“I called to the mother of the girl and explained to her how my own daughter was attending the school and a daughter of Michael Joe Egan, and that it would be in the girl’s own interest to go. She did, and that girl has travelled the world since,” said Johnny.
Later, they built a sophisticated prefab school in The Lawn in Castlebar and, as the association’s services developed, school’s for mild, moderate and severely handicapped children were provided. Some of the profoundly severe are kept in residential homes.
Tom Fallon was part-time secretary of the Association and eventually became its first full-time secretary. He was a great motivating force, according to Johnny Mee, full of drive, commitment and compassion. Michael Joe Egan had also great ideas, and some excellent people like John Taheny, Joe Mulrooney and Paddy Mangan and many more also gave a huge amount of their time to the association.
“It is one of the great success stories. We are now in the 21st century. But it would not have been possible without the financial support, enthusiasm and encouragement of the people of Mayo. Forty years on, any child born in Mayo, no matter what the extent of its handicap, is looked after in the county. Forty years ago it was hard to know where to look for help when children with mental handicap were born.”
The association, now under the leadership of John O’Dea, is one of the most advanced of its kind in the country. Johnny Mee is chairman of the board of management of St Anthony’s School, a new state-of-the-art school, opened last year. He is forever amazed at the dedication of the staff. It is not an easy job, he says, but they work way beyond the call of duty. It is a wonderful association.
Every parish has a branch. In the smaller areas of population there are group homes. Respite homes to which children are brought for short periods to give their parents an opportunity to relax have been established. They will go out to do the shopping, they are brought out to socialise and they are accepted as part of the local society in pubs and other places.
“One thing that worries me a little is that people sometimes forget that intellectually disabled children grow into adults. My daughter is 44 and she is working. But there is still a great need for sheltered employment for children. That is the one thing I would like to see developed.
“While Western Care and Kevin Bourke’s Rehab have done excellent work in the provision of sheltered employment there is still a need for further workshops. Many of them found employment in supermarkets and shops, and fair play to many employers, they are very good, very thoughtful and very understanding of the problem.
“But there is a certain percentage who will always have to have sheltered workshops. And while governments have provided substantial funding for the services there is I feel an onus on the state to provide sheltered workshops on an ongoing basis for children unable to take their place in an open work situation.”
In addition to the State subsidies voluntary subscriptions are vital. “The annual collection is a very important aspect of the Association’s work. Some people have been collecting house to house for the association for 30 years. The revenue is very important but equally important is that it creates a link between the Association and the people throughout the towns and villages.”
He recalls how nervously he embarked on his first door to door collection shortly after the founding of the association. A gentle old lady came to one of the doors with five shillings, a fair amount in those days. Johnny said it was too much, but the woman insisted. Nothing is too good for those children, she said.
Johnny praised parents for their efforts to provide a fuller life for their mentally disabled children. “Some people who don’t have intellectually disabled children find it difficult to understand how parents can accept it. But in this world you can accept anything. A person said to me once that it must be very difficult to have a daughter like yours who is that bit slow.
“I said it wasn’t. It is difficult at first and you’ll pray that she will turn out like every other child. But the other side of it is that Mary is great. She is a very loving daughter. Never forgets birthday or a wedding anniversary. She is very bright and hardworking,” he said
“Mary Mee never gives us a day’s trouble.”