Speech at the launch of the Irish Centre for Autism and Neurodevelopmental Research
Galway, 24th February 2012
Dia dhíbh go léir inniu. Tá an-áthas orm bheith anseo libh ar an ócáid speisialta seo. Míle bhuíochas díbh as an gcuireadh agus an fáilte a thug sibh dom.
I would like to thank Dr James Browne, President, NUI Galway and Dr. Geraldine Leader, Director of the Irish Centre for Autism and Neurodevelopmental Research for inviting me here today. It is a great honour and privilege to be here today on this special occasion.
Drawing as it does on the scholarly reputation of Dr Geraldine Leader and her colleagues I have every confidence that this new Centre will not just achieve standards but help set them both here and abroad. Days like today do not happen in a vacuum – they come about because of long years of hard effort. I would like to add my voice to the chorus of others congratulating Dr Leader and her team and indeed commending the University for creating the imaginative space to make this happen.
In reflecting about the significance of today’s event, I suggest that there are three reasons this Centre, its underlying mission and its work are hugely important. Let me start with an obvious point from the perspective of our citizens with autism. All of us rely on each other for support and indeed our very identity is forged out of our interactions in community with each other. The very stuff of our ‘selves’ is a function of how – or whether – we interact. These common intuitions are being steadily supported by science. The great neuroscientist – Antonio Di Masio – recently described the mind as a ‘relational ideal’ – something forged in communion with others. It is curious how the very thing needed for personal growth and development, namely opportunities for interaction, had somehow been restricted for persons with disabilities – including especially those with autism.
It is significant too and replete with implications how our thinking in the past about disability generally and autism specifically is built around assumptions about personal or human ‘deficits’ or failings. So autism becomes or, more accurately, is construed as a ‘problem’ of the person to be fixed. It is but a short step then to saying that people themselves are problems. This negative mentality was deeply etched in all cultures but is thankfully on the wane.
I was very taken by the insights of Ambassador Don McKay of New Zealand who chaired the drafting of the new UN Convention on the Rights of Persons with Disabilities. He said that the whole point about the Convention – and the whole point about modern thinking about disability – is to get away from framing persons with disabilities as ‘objects’ to be managed, or cared for even in their own ‘best interests’ and towards a philosophy of viewing them as ‘subjects’ with equal rights and deserving equal respect.
This point was also conveyed in broader and eloquent terms by Robert Kennedy who once famously wrote:
…we can perhaps remember -- even if only for a time -- that those who live with us are our brothers and sisters; that they share with us the same short moment of life; that they seek -- as we do -- nothing but the chance to live out their lives in purpose and happiness, winning what satisfaction and fulfilment they can.
Why does this matter and how does it relate to the establishment of this Centre today?
Well, we have in discourse and policy to move decisively away from ‘deficits-based’ thinking about disability and specifically autism. We have to create paths that enable the humanity and personal wishes and preferences of persons with autism to be expressed. Fixing the person is not the challenge – exploring new ways of enabling and honouring human expression is the challenge. And this is precisely what this Centre offers. So I would encourage you not just to recognise it as a technical research Centre but as a source of insight into how to release human potential – playing its part in honouring the subjectivity and integrity of persons with autism in our system.
I mentioned the UN Convention on the Rights of Persons with Disabilities and I do think the work of this Centre will mark a significant contribution towards its advancement in Ireland. The relevant provision in the Convention – Article 12 – envisages a general shift of emphasis onto supports to enable people to form and express their own desires and preferences and make their own decisions. I see the work of this new Centre paying a vital role in helping us sort out what kinds of supports work, how they create paths for progress and thus enable persons with autism chart their own life journey and make their own decisions – big and small – and have these decisions respected by others.
Benjamin Franklin once observed that the ‘right to pursue happiness’ did not give a guarantee of happiness – merely a right to pursue it. Our citizens with autism do not lay claim to special rights – but they surely have the same right as all of us to dream their own dreams and to pursue their own dreams. To my mind, the practical research to be pursued in this Centre brings us closer to realizing human fulfilment for all our citizens and not just the majority.
The second reason I view the establishment of this Centre as important has to do with broader currents of thought of which it is a part. Human flourishing is never a matter of isolated individual effort. If we are collectively committed to human autonomy – as we all are – then we have to become concerned for the conditions under which that autonomy can flourish.
The terms of our social coexistence - and the health or otherwise of our community fabric - is just as important to our autonomy and freedom as is other concerns. It often seems to me that – in the headlong rush to material wealth – we all forgot this most basic of insights. Damage was done to the social fabric on which we all rely. Responsible individualism morphed into possessive individualism. Those who required social support were easily portrayed as calling for special rights – and not equal rights. Our political community seemed reduced to an open-ended framework allowing private interests to compete with private interests. Public policy appeared to be a pale shadow of competing private interests and the ‘public interest’ appeared to be just the point of competing vectors.
Even without economic challenges that could not last as it would inevitably feed on itself. Now we find ourselves at an interesting crossroads in history. On the one hand, we are now at the start of an effort to retrieve all that was liberating in the founding ideals of the State. I think it is important to reflect that a Republic worthy of the name rests on ethical principles first and foremost. In a sense we are now in a process of retrieval – a process of re-discovering what these ethical principles are and how they can be reconnected as we renew our sense of Irishness. One the other hand, we are also in a process of reimagining the link between society and the economy. We are a market economy but this does not mean that we are inexorably fated to be an exclusively market-driven society or indeed be governed by a market-driven political system. There are political choices to be made and we should make them in full knowledge of their ethical dimensions and social consequences.
Whichever way you look at it, the work of this new Centre will help give concrete expression to a new approach to Irishness in the 21stcentury - one in which persons with autism are treated as equal citizens. Rights, equality and participation were the guiding principle of the Government’s Taskforce on Autism in 2001. This Centre is a tangible step in that direction.
The third reason I view the establishment of this Centre as so important has more to do with an expanded vision of what the university is for and what it can do in our democratic culture. Here I revert to a theme I first discussed during my conferring with an honorary doctorate just a few weeks ago in the National University of Ireland.
Universities are both apart from and a part of society. They are apart in the sense that they provide a critically important space for grasping the world as it is and – importantly - for reimagining the world as it ought to be. The academic freedom to pursue the truth and let the chips fall where they may isn’t a luxury – in fact it is a vital necessity in any society that has the capability for self-renewal.
But universities are also a part of our societies. What’s the point unless the accumulated knowledge, insight and vision are put at the service of the community. With the privilege to pursue knowledge comes the civic responsibility to engage and put that knowledge to work in the service of humanity. Vice Chancellor Nancy Cantor of Syracuse University called this ‘scholarship in action.’
Ideas do count. Indeed it was John Maynard Keynes himself who wrote:
Practical men, who believe themselves to be quite exempt from any intellectual influences are usually the slaves to some defunct [theory]...
I acknowledge NUI Galway as a leader in civic engagement – a leader in putting its intellectual assets at the disposal of the community. I applaud the move to value academic achievement not just in terms of the number of published articles but also in terms of its social and community impact. I see the research and educational work to be pursued by this new Centre in this broader context. To me it is a prime example of research that is socially aware, socially responsible and that lives up to the highest vision of what a university is for – a constructive agent of change for the good in our society.
So I look forward to the work of the new Centre: work that is critically important to the human flourishing of our citizens with autism; work that plays its part in the renewal of our Republic; and work that represents the best a university has to offer the democratic life of the nation.
Thank you again for inviting me here today. I wish Dr. Leader and her team every professional success and personal fulfilment in their work. I know they will enjoy the enthusiastic support of Dr. James Browne and all his colleagues in the University. Most of all, I hope that for our citizens with autism, and their families, the advent of this Centre marks another positive step forward in their journey to full participation in our shared society.
Comghairdeas libh agus go raibh míle maith agaibh go léir.