Giving a voice to those with Down's Syndrome

This weekend promises to be a busy one for Pat Clarke; the busiest he has experienced since he became president of Down's Syndrome International (DSI) last August. Clarke, who lives between Bettystown and Duleek, is the first Irishman to head up DSI. It's an organisation that promotes the interests people with Down's Syndrome and their families on five continents and Saturday 21st March has been chosen as the 'World Down's Syndrome Day'. The date wasn't picked at random. "There are three chromosomes on the 21st chromosome and that's how a person gets the physical characteristics of having Down's Syndrome," explains Clarke, who is originally from Ardee, but who has spent most of his 59 years living in Meath. A range of events have been organised over that weekend and into the following days as the organisers seek to generate interest for the cause. And for Pat Clarke, the Down's Syndrome cause is very close to his heart. The events he will be attending over the weekend include the launch of a new DSI website, a function in the House of Lords and a DSI board meeting, all in London. He also intends going to Rome where he will speak about Down's Syndrome in Ireland. There are one or two other functions he has to somehow fit in during what promises to be a helter-skelter four or five days of intense activity. "The Down's Syndrome Day is on the 21st but, for logistical reasons, a number of organisations can't celebrate it on that day. Down's Syndrome Ireland, for instance, is celebrating the day on Wednesday 24th March with a gathering in Dublin when we launch our 'Helping Hands' awards to people with Down's Syndrome who have achieved great things in their lives and people who have supported us," he explains. Also to be officially launched on the 24th is a new initiative by Down's Syndrome Ireland which aims to make political manifestos easily understood by people with learning difficulties. As his lofty position in the DSI would suggest, Clarke has to spend a lot of time looking after the organisation's business. He does so on a purely voluntarily basis. He is intensely focused on the role of improving the lot of those with Down's Syndrome and their families. He is familiar with the thorny issues involved having already spent time as chairman and president of Down's Syndrome Ireland. He spends up to 20 hours a week on disability issues. That's all added onto his work in his 'normal' job as a self-employed consultant accountant. Clarke is on the board of the Brussels-based European Disability Forum which represents up to 60 million people with disabilities. It can be difficult juggling everything yet he still "gets the job done". Clarke speaks about Down's Syndrome from first-hand experience. Back in the late 1970s, Pat and his wife Madeleine discovered that, when they had the second of their four children, there was something different about this youngster. Soon after the birth, the young couple were told that their son David had Down's Syndrome. "It was a number of hours after David was born that we found out; he was born mid-morning, in the Lourdes Hospital. It came as a bit of a shock, obviously. We weren't expecting it, we had no prior knowledge that David had Down's Syndrome at all," he recalls. "We accepted it, we got through it with a good deal of help from people in the hospital," Pat told the Meath Chronicle last Wednesday, the same day David celebrated his 29th birthday. Full life When they brought their baby home, his needs were the same as any other new arrival and they resolved that, from the time the disability started to manifest itself, they would deal with each issue as it arose. It was the classic one-day-at-a-time approach and it has helped David Clarke live a full life. These days David attends the Dundalk Institute of Technology where he is undertaking a certificate in contemporary living course validated by Trinity College. He attends college three days a week, and works in Tesco for two. He's on the Irish international swimming team and won gold medals in various international competitions. David is also a blue belt in karate and, while he resides at home, he lives an independent life. David continues to live at home, adds his father, only because they have yet to get around to finding him a place of his own. The Clarkes sought to treat David in the same way as their other three children in every way possible. After he was born, there was the obvious risk that the Clarkes could have another child with the intellectual disability. That didn't deter them from having two more daughters. "We did get genetic counselling at the time of David's birth and we were advised that there were risks. The risks at that stage for people of our age was relatively small. Obviously, during the course of the nine months, you would be concerned, you would be worried," added the DSI president. Pat Clarke says there is still "a certain element" of discrimination to be tackled when it comes to disability, although the situation has greatly improved in Ireland in recent times. He says his work with the European Disability Forum is part of the drive to ensure civil rights for all. "We want to establish within the political arena over the next 10 years a disability pact which would be a pact between the European Disabiliy Forum and the European Commission, to ensure that disability issues will be out front in all their future policies, that there will be no wriggle room for people to say, just because you are disabled you are not entitled to this or that. We are looking for equality across the board when it comes to disabilities." A key element is to create an environment where more disabled people get out and vote, thus increasing their influence. "Lets face it, if you've got a disability the reason you're not interacting with society is because the supports are not there to interact with society, at all levels, education, employment or otherwise. Things have improved and will continue to improve and that's why it is important all of these issues are enshrined in the political policies of the European Union," adds Clarke, who continues to lobby the Irish Government to ratify relevent legislation outstanding and improve the lot of the disabled. When asked what advice he would give to a young couple who find out they are going to have a child with Down's Syndrome, Pat Clarke harks back to his own experience. "I would advise them to look at all their options, look at what they need to do. Down's Syndrome Ireland does provide a counselling service. I'm quite well aware of a number of parents who might decided that, considering their time in life, termination is the most approprite option and I wouldn't be standing in judgement of them. "I'm not standing in their shoes and I cannot make that call, I don't know their circumstances," he adds. "Knowing what I now know, I would be advising them to continue with the pregnancy. Let's face it, when David was born nearly 30 years ago, services were exceptionally limited. "The services that are available now, my God, if we had them with David back then, I don't know what he wouldn't have been capable of doing. There is no need for people to despair whatsoever," he says, urging those with a Down's Syndrome child to utilise the "excellent" home teaching service. For the past 30 years, Pat Clarke has been fighting the good fight for the disabled. He continues to seek to give a voice to those who, for so long, were silent.