Dr Robin Way, Board Member of The Spastic Centre of New South Wales and daughter of the founders, Neil and Audrie McLeod.
Tonight celebrates the life of an organisation that has been in existence now for 60 years.
Because organisations are the lived experiences of so many people who have inhabited them, and who have left their mark upon them for good or for bad, they are not static structures. They are the conduit for all of the dramas, the celebrations, the conflicts, the hopes and aspirations of those people within them. No organisation displays this more effectively than The Spastic Centre of New South Wales.
A person I know argues that organisations are inhabited by the ghosts of their founders. That the beliefs and values of them (and therefore of the time in which they acted) continue to inhabit the deep structures of the organisation and influence, in all sorts of ways, the outcomes of the present. As one placed in a unique position in which I have observed the life of the Centre throughout its various phases, I have noted some of those beliefs and values which have been a constant thread within the organisation’s life and operations.
Shortly after my sister was born, my parents were thrust into the world of disability, it was (as it continues to be for every such family) a new experience - terrifying, painful and full of concern and doubt about the pathway forward. They were told (as were so many families in that time period) to put her in an institution, forget that they had had her and get on with their lives. Fortunately, they didn’t and their quest for knowledge forged a partnership that focused on finding solutions to this new problem. In a time when so little medical or scientific knowledge was available, their drive and need for answers meant that other similarly affected families were drawn through their leadership to join in their search and establish The Spastic Centre of New South Wales.
Initially, their quest focused on things medical - with what the cerebral palsied body needed to function and to be comfortable. To increase mobility and speech and to understand what might be possible both to ameliorate and eventually prevent spasticity from occurring. Then to education; to argue against the prevailing perspective that this was a waste of time and taxpayer’s money. Then, as the children grew into adults, the issue of employment – not pretend employment in sheltered workshops, but real options (seldom seen now) in an integrated setting with able bodied workers alongside people with extremely high levels of disability. And then to research into treatment options for babies and young children - Bobath techniques and Conductive Education; biofeedback techniques to assist people control their own spasms and muscles, and in the present the Hart Walker and BOTOX; and communication and mobility equipment which enabled people to be a part of their family, community and society.
None of this could have emerged without the core values of trust and reciprocity being enacted within the organisation, coupled with a belief that collective action could change at least this part of the world. From 1945 onwards, as the first parent-run organisation of its kind in he world, the families who came together to throw off the mantle of victim became the experts on cerebral palsy, lobbying, arguing against prevailing practices and policy, educating and raising the funds any way they could – from the early Friday night poker school which frequently paid the organisational wages for the next week, from gifts which ranged from strawberry ice cream delivered by Mr McNiven himself, the catch of the local fishermen for the ‘kid’s lunch’, to the gift of the Mosman property from an importer touched by my father’s vision. Money was always short as the ribbon and badge days, appeals, fundraising and sponsorship events attested. The bonds between the families who have inhabited this organisation have always been a feature of it. It is where they could show each other their fears and draw upon their strengths. I remember a tangle of people coming and going during the years we lived at Mosman – some families moved in with us for long periods, others for a few days as various crises in their lives were resolved. But support and assistance from one to the other was a key element of how this organisation has always functioned.
Collaboration with the community has always been a part of this organisation. Judges, politicians, leaders of the business community, labourers, rugby league teams, steel workers, plumbers, waterside workers saw the community build every one of the buildings in the first wave of the organisation. This practical show of support became a model for other organisations as various disabilities came to the fore and also needed their own specialty arenas and emerged again as a demonstration of support by the Italian community at Prairiewood.
This collaborative action was not isolated to New South Wales. From the 1950s through to the 1980s, Australia moved to the forefront of expertise in the area of cerebral palsy. The USA and Japan in particular came, learnt and established models built around what was known here – particularly in the area of employment options. Indeed the McLeod Society of Japan formalised the links between Australia and Japan (and we are fortunate indeed to have with us tonight Professors Nagasaka and Suzuki who played such a big part in this collaboration) and facilitated many model factories being established whilst Center Industries in Witchita, Kansas continues to build Boeing aircraft engines based on the research into engineering techniques pioneered at Centre Industries.
That the organisation was and is, being run by those closest to the problem of cerebral palsy – parents and people with cerebral palsy is the key to the credibility of the organisation today. A slightly different structure now, supported by highly professional staff, but when our Chairman speaks, it carries a truth that those who have not experienced the world of disability cannot emulate or indeed argue against. When people with cerebral palsy speak, it is from the lived experience that enables some understanding of the challenges life throws to them. The knowledge and awareness of reality brought by these groupings to the deliberations of the wider Board of Directors and management is an essential element of ensuring that the voices of those most affected remain strong and visible. Neville Wran once commented that he dreaded going to a Spastic Centre event because he knew Audrie McLeod would not allow him to leave without a change in policy or a large cheque. I have seen similar effects from Marelle Thornton’s words to many and varied audiences. And so the further value of being a key player in the development of social change and social policy has been a continuing thread throughout the Centre’s lifespan.
When my parents started to live their vision for The Spastic Centre of New South Wales, they hoped that somewhere the solution to cerebral palsy would emerge. So whilst we celebrate 60 years of a remarkable organisation, we need to remember that the task they began is not complete. I hope that all of you here tonight will join us in this ongoing journey to complete their vision and to celebrate the lives of all of those people who have been a part of this extraordinary organisation.
Thank you.
