Remarks by President McAleese at the Opening of the Conference on Childhood Disability
Remarks by President McAleese at the Opening of the Conference on Childhood Disability in Armagh City Hotel, Tuesday 25 October
Dia dhíbh go léir.
Thank you for the warm reception and for the invitation from Dr. Brid Farrell to open this Conference with its focus on Childhood Disability.
There was a time not so long ago when such a conference would have been designed specifically to attract an audience of healthcare professionals talking to themselves about medical issues or educational professionals talking among themselves about education. Occasionally parents might have been invited to attend meetings, though rarely conferences, at which they would listen to the views of the professionals. Children with disabilities, would have been at home, no matter who was meeting where. But we meet today, thankfully in very different circumstances and, in effect, a very different culture where the old walls between disciplines and spheres have come tumbling down and a new partnership has grown between all the players. Today the value of each wisdom, experience and insight is recognised as an important part of the jigsaw puzzle, we need to put together, if the truest picture and best solutions are to be found.
So it is heartening and re-assuring to see how widely drawn this audience is and it is particularly encouraging to be able to welcome visitors from all over these two neighbouring islands. The opportunity this conference presents for co-operation and collaboration augurs well for all those who have a vested interest in enhancing the quality of life of those affected by childhood disability.
Back in 1997 I remember hearing a news item about the welcome discovery of a gene associated with a particularly serious childhood illness. The head of the research team was explaining how after over two decades of research in Ireland and around the world, the gene had at last been discovered and the prospect of a cure or better treatment had come much closer. But he also said a very telling thing….. his team was like all the other research teams, anxious to be the first to discover the gene and their research had uncovered information which made little sense to them but which they did not share with their colleagues in other parts of the world. One day a member of the team asked a question - what is more important - to find the gene or to be the first to find the gene? Obviously the latter they all said, yet they had to admit that just as they were concealing information it was likely that the culture of competition between the teams meant that other teams were doing the same. They decided to invite the other researchers to a collaborative search for the gene and when they gathered and each put on the table what was known to them, pieces of the jigsaw puzzle which made no sense on their own, suddenly found their matching part, and the gene revealed itself.
Each of you has come to this conference with your own unique part of the jigsaw puzzle, your own insights and mysteries. I hope that, here, there will be moments of revelation and affirmation which will make tomorrows policies, plans, services and supports even more sure, more effective and more caring than today’s. I know that this is the spirit that infuses the Child Development Clinic whose 25th birthday this Conference marks and it is the belief that drives the Wraparound Project.
In this past quarter of a century we have seen phenomenal changes in attitudes, services, rights and opportunities for those with disability generally. The Clinic was itself a crucial milestone in the creation of a child-centred and family-centred approach to disability in childhood, nudging the public and the professions towards a broader and better awareness of the need for integrated services. The landscape of the past was littered with indignity heaped upon disability, with so many talents gone to waste, so many lives lived on the margins as spectators rather than full contributors, their talents wasted and all of us impoverished as a result. The landscape of the future, thanks to so many people’s efforts, is a very different prospect with the rights of people with disabilities enshrined in law, greater sophistication in services, and a strong determination emerging that nothing less than the fullest participation in every aspect of civic life is acceptable.
We owe a huge debt of gratitude to all those who have made this their life’s work and whose passionate advocacy has helped our societies to grow in wisdom and understanding as well as ambition on this issue. We want to be communities where everyone matters and everyone feels that they matter. We want to be communities where those with childhood disability get the best care at home, in the community, in the health and education services and where opportunity to blossom opens up to them spontaneously without always having to kick some barn door to get attention.
I know that is what you work for, long for, and that is why you are here today - to ensure that there will be appropriate and effective support easily available to the child and family coping with disability, that it will be co-ordinated and planned, that the challenges faced by parents of children with disabilities will not be arbitrarily and unnecessarily worsened by bureaucracy or barriers that drain their energy and make them feel invisible, that a caring system will kick in and stay in so strongly that each will be enabled to see beyond the disability to the possibilities for a happy life opened up by the unique qualities and gifts which every child possesses.
I am sure that this conference will raise the profile of childhood disability, advance innovations in services for children with disabilities and send you all away with a restless curiosity about how to keep on doing things better still, as well as
re-energizing you for the days ahead. I know that everyone here is committed to providing the best possible lives for children and their families. Who can forget the Special Olympics in 2003 and the unforgettable lessons we all learnt about what happens when you focus on ability and not just disability and what happens too when we all pitch in and work together.
I hope that each of you will take away from here something of that Olympic spirit, the best of shared memories, new friendships, embryonic new networks and a great surge of revitalised energy. If you do, then all the months of hard work that went into organising this conference will have been vindicated and rewarded a thousand fold.
In conclusion, I wish to congratulate everyone who has worked to make this conference a success and an event which I hope you will find to be as stimulating as it is fruitful. My thanks also to the choir for its wonderful performance.
Go raibh maith agaibh.