More than just a syndrome

YOUR LIFESTYLE: MICHAEL GANNON wants people to know him for his personality rather than as a person with Down syndrome

YOUR LIFESTYLE:MICHAEL GANNON wants people to know him for his personality rather than as a person with Down syndrome. The 29 year old from Newbridge, Co Kildare, has never let his disability hold him back from his ambitions, despite sometimes negative public reaction, writes MICHAEL McHALE

When he first got involved in the Newbridge Pantomime Group and the local musical society, which he still works with, some initial reactions from colleagues were less than welcoming. “They saw Down syndrome but they didn’t see the real person,” he says.

His interest in drama and dance led him to work for a year as an assistant tutor on the drama and dance module of the Contemporary Living course in Trinity College. This came after he completed a three-year course at the Vocational Training Opportunity Scheme in Newbridge, which focused on computer skills, work experience and drama.

According to his mother May, who is also a counsellor and drama therapist with Down Syndrome Ireland, Michael was particularly lucky in his education. He attended mainstream primary and secondary school, where “the philosophy was ‘everyone could participate’ – that gave him a sense of belonging”.

READ MORE

While Michael faced challenges in school in how people perceived him, an awareness of his condition helped him to overcome these. “We talked to him about Down syndrome and that probably increased his awareness,” says May.

“If people with Down syndrome can accept the Down syndrome and if the family can accept it, they can say: ‘Yes, I have Down syndrome, but I’m not stupid’. Mental wellness for them is about being accepted as who they are,” she adds.

However, in her work as a counsellor May has often come across families who seem to prefer to remain silent on the intellectual disability that their son or daughter has. “They have the idea that their child is happy so why bring it up?” she says.

“But Down syndrome is very visible, so when they go out into the community that’s what people see. If you don’t talk about it, other people will talk.”

According to May, one of the keys to Michael’s success has been his independence.

She describes her role in providing care for Michael as “more an emotional support than a physical support”. While Michael lives with his mother, when he was left alone for the last week in July while May was away, he was able to look after himself.

“He did what any young man left on his own would do,” she says. “He ate food from the freezer or went to the local restaurant.”

But in the long term the concern is that Michael being left on his own could lead to loneliness and depression, a mental condition that is particularly prevalent in people with Down syndrome.

Despite Michael’s self-sufficient lifestyle, not all people with Down syndrome are given the opportunity to live independently. According to May, some carers can unintentionally hinder the development of a person with Down syndrome by doing too much for them, meaning that stress can be caused if they are left to do tasks that they would otherwise be capable of carrying out.

Michael’s next project is his work as one of 54 Irish ambassadors taking part in the inaugural International Synod of People with Down Syndrome, which takes place on August 19th at the Royal Hospital Kilmainham and will also include ambassadors from Europe, Asia and the US.

The theme of the parliamentary-style discussion taking place at the synod will be “Living with Down syndrome”, with topics such as independence, human rights, sexuality and citizenship being debated.

As part of the preparations for the synod, Michael has undergone a six-month training programme run by Down Syndrome Ireland, where the issues affecting people with Down syndrome have been discussed. The synod is part of the 10th annual World Down Syndrome Congress which takes place in DCU from August 19th to 22nd.

As well as this, Michael is also writing his first book, to be called What you see is what you get. "It's about my family history, life and interest," says Michael, who in the past few weeks has received interest from RTÉ in the publication.

The Kildare man will also be kept busy with the Newbridge Pantomime Group, which will celebrate its 70th anniversary next year. But despite Michael’s success, May says that many people with Down syndrome are hindered from achieving their potential due to flaws in the third-level education system.

“Third level is now at the stage where primary education was 15 years ago,” she says, adding that colleges “need to make space in their courses” for people with intellectual disabilities like Down syndrome.

“What they’re teaching can be adapted for people with Down syndrome. The arts, drama, dance – we have many people who are able and interested in these areas.

“But these courses have a high academic input, they’re required to write lots of essays, which doesn’t suit people with Down syndrome,” she adds.

In the meantime, however, Michael continues his hectic lifestyle, and should he come across a person who treats him negatively because of his disability, he has just one reaction: “I would say, ‘stop looking at Down syndrome and see the real person and the things they have’.”