For more than two decades, Kathryn Sinnott has campaigned tirelessly to get educational rights for her autistic and profoundly mentally handicapped son, Jamie, and others like him. It’s a battle that has taken her right as far as the Supreme Court. John Scally meets a mother who has given hope and inspiration to all with learning difficulties, and to their loved ones.
For more than 20 years, the world of Kathryn and Jamie Sinnott has been one of pain, bewilderment, courage and perseverance. Kathryn, a personification of ‘Mother Courage,’ describes her life in two phases, BJ and AJ – ‘Before Jamie’ and ‘After Jamie.’
Jamie was only three months old when he first began to exhibit symptoms of autism. When he was just a toddler, Kathryn was treated with little sympathy by health care professionals. A psychiatrist remarked that children were made autistic by cold, unloving mothers – “refrigerator mothers.” He told her that Jamie would ruin her life, and because she was young she should “forget Jamie and get on with her life.” For all that, Kathryn’s pride in her son knows no limits.
Centre of the family
“Jamie is a very handsome 24-year-old, who at this stage is not just autistic but very profoundly mentally handicapped,” she says. “He is the third of nine children. He is very special to all of us. Every one of us is involved with Jamie. In a way, he’s the centre of the family.
“Jamie was born a normal boy but, after four months, he changed dramatically. There was a vaccination involved, and he lost skills. We had him in hospital, and the paedriatic unit said they wouldn’t discount autism. I immediately went looking for help but there was no help to be found. We made a return appointment to the paediatric unit but, three months later, we could see him regressing by the day. Autism is a process of regression, so we went to the United States to see what help was there. Immediately, we were struck by the change of attitude. It was like as if we walked into an emergency room and people were eager to help us.
“By the time we left and came back to Ireland two and a half months later, he didn’t look autistic any more, and he was beginning to look as if he’d just woken up from a long sleep. But when we came back to Ireland, there was nothing for him again, and once more he regressed.
“I kept in touch with the centre in America, and when Jamie was three, they said: ‘Come back again.’ When we got there again, they told us that Jamie had lost a lot of time but they would try and recover something. We stayed five months, and it was all recovery work. By the time he’d left, he had spoken his first words, and they were happy with him because he was on the path to learning. They thought he was on the road to healing.“
We came back to Ireland a second time, and once again there was no interest in Jamie’s case at the official level. There were some very nice people who helped out with babysitting, but there were no services. What it ultimately came down to was a familiar belief that nobody who had a profound mental handicap could learn.”
Three roles
Going about her normal daily routine in her home in Ballinhassig, Co Cork, Kathryn juggles with three roles: mother to Jamie and her other children; ‘counsellor’ to other parents in similar situations; and campaigner to get full human rights for all those with learning disabilities.
For 24 years, Kathryn has campaigned to ensure that no more young people will ever have to “share the scrapheap with Jamie” and, like him, arrive at 18 years of age uneducated. She has struggled to persuade the health and education authorities to recognise autism, and provide appropriate education and training for those with it. She has evoked the country’s admiration because she has done so, in the words of the High Court, “in the face of official indifference and persistent procrastination.” Despite the many setbacks she has had on the way, she remains defiant and determined to continue her battle for educational rights for the disabled, whatever their age.
“I’m a firm believer that much of intellectual disability is avoidable. It’s the lack of appropriate help that creates layer and layer of more problems.
“When Jamie was younger, I formed a society for children who were profoundly mentally and physically handicapped. I had a great bunch of parents with me at that stage. We thought of going to court but we got a very negative reaction from people we thought would support us. We were told we’d have to raise a £90,000 fee, which was a daunting sum. Years later a great mother, Maria O’Donoghue, went to court. During the trial, we were all very impressed by Justice O’Hanlon. It was the first time we had ever seen any figure in authority actually listen to us and take on board all we were saying. This was a wonderful feeling.”
Lots of attention
In October 2000, a High Court judgement ensured that Jamie would receive special education at home. Since then he has started to use his hands. Kathryn has only recently discovered that her 24-year-old son is left-handed. Jamie now responds to verbal commands when he is being dressed, and co-operates with the process. Before, it was a daily struggle to get him dressed. He now gets lessons from his tutor in his special classroom and plays ball with his brothers.
“Jamie’s become the focus of a lot of attention recently because everywhere he goes people are surprised to see the change that has taken place in him in the last year or two since he’s got help. Over a year ago, he was hunched, and you’d never see his face. Now, he’s tall and he smiles. He’s following some direction. Jamie’s an emerging person.”
In this case, every smile tells a story. Jamie almost never smiled as a child, but now smiles every school day. To talk with Kathryn is to listen to two stories, Jamie’s personal story and Kathryn’s larger struggle to get rights for those with various disabilities who are consistently treated as second-class citizens in Ireland. Kathryn believes that by her actions, the government views children with autism as “enemies of the state.” Her campaign to reverse this situation involved endless letters, meetings and frustrations, but when many others stopped believing in the campaign Kathryn never gave up, battling on alone against the experts and the status quo. On the way, Kathryn had some degrading moments. In 1996 she was forced to “squat” her son in a classroom with other disabled students.
Open cheque book
It was largely her campaign that prompted the Minister for Education, Dr Michael Woods, to say that he had ‘virtually an open cheque book’ to ensure the State made “full and appropriate provision” for both the education and care of people with disabilities. However, she plans to campaign to secure a constitutional amendment to ensure that people with disabilities everywhere are treated with respect.
Kathryn’s eldest daughter, Brigid, has chosen to work with autistic children. Nonetheless, the family has concerns for the future. The landmark High Court judgement in 2000 which allowed Jamie access to the education he was denied throughout his childhood was reversed by the Supreme Court in 2001. The funding for Jamie’s current education runs out in a year’s time. In the longer term, one question lurks ominously: what will happen when Kathryn is no longer there to look after Jamie?
Kathryn Sinnott is an inspiration not just for those interested in disability issues but for anyone interested in the potential of the human spirit. Any contact with her lingers long in the memory and raises many troubling and uncomfortable questions about the type of society we live in.
“Jamie’s situation has long since ceased to be just about Jamie. When you take a case for one person, you find that others come looking for help for them in their situation. With that in mind, I started the Hope Project in 1996. There are hundreds of people in it, and yet there’s only a few in it! We have a tight unit that works out of the corner of my house. I provide a helpline for people coping with autism and wider disability.”
This article first appeared in Reality (June 2002), a publication of the Irish Redemptorists. If you would like further information on autism, contact the Hope Project on (021)4888503.
