In the summer of 2007, I had the great and unforgettable good fortune to be awarded a Winston Churchill Travel Fellowship: for 3 weeks in Canada and the United states and later in the year to the World Congress of Conductive Education in Göteborg, Sweden.
If you have not heard of the Churchill Travel Fellowships, I strongly urge you to check them out. The application process couldn't be easier nor the interviews more friendly and, what's more, the Fellowship will fully fund your travel project.
What follows is the introduction to my 'Study Fellowship Report: A Continuing Journey - The Education of Children with Cerebral Palsy'.
INTRODUCTION
This report is not a diary nor a journal and certainly not some sort of a travelogue. I deliberately did not take with me a video camera or a voice recorder. Although I did take still photographs, these were solely to upload to the internet as a means of sharing with colleagues and family at home where we were at any one time. I say “deliberately” because my intention was quite otherwise; I did not want to be distracted by technology myself nor, when meeting people, did I want the meeting to become formalised by the intrusive presence of a recording device and the necessary requests for permissions that recording would have entailed. Nor did I want, as would have tended to happen with such devices, to turn precious meetings into formal interviews, with the assumption of a prepared set of questions. Those, I certainly did not have.
My intention rather was to travel and to meet; to listen and to absorb; later to reflect and to consider how the Fellowship experience should impact on and change my own practice. In this sense, in a very real sense, the Fellowship journey is a continuing one - long after the actual journey has ended. In this very real sense, too, the Fellowship has lasting value and inspirational.
However, there was an actual journey. I was fortunate that, with arrangements for our adult disabled daughter settled at home in Sheffield, my wife was able to accompany me, at least on the American stage of the Fellowship.
In Vancouver, we met two individuals with cerebral palsy whose passion is inspiring: Yoshi Tanabe, a activist, whose energy, at an age not much younger than mine, challenged me to renew my own commitment; and Glenda Watson-Hyatt, who has created a web presence for her life and work. Along with Yoshi, mention should be made of his team at the Voice of the Cerebral Palsied of Greater Vancouver, Karen and John, and, likewise, having met him, no mention of Glenda should pass without mention of her husband Darrell, himself also a person with cerebral palsy; two impressive teams.
Yoshi has created an organisation as I have. I know it is not easy. I do not have cerebral palsy. He reminds me that such organisations should be organisations of people with cerebral palsy. Things should be done. Things can be done.
Glenda is using the internet as a tool for economic activity and for personal communication. She has used her blog in remarkably innovative ways, to create and to network an international community.
In Seattle, the internet theme was continued in conversation with Scott Newlon. The value of Web2.0 social networking and collaboration tools change the possibilities and potentials of the internet – a theme that was to be repeated as the Study Tour unfolded.
My passion, of course, is parents. One of Paces’ founding values, along with a commitment to inclusion and partnership working was to put parents at the heart of the service delivery. Two Californian organisations showed how this might be done in the UK.
Firstly, in Santa Clara, California, CEO Mary Ellen Peterson, introduced me to “Parents Helping Parents”. PHP is a services delivery organization and is a model for much of what Paces aspires to be doing. How often have I myself said – and heard others, say “I’m just a parent”? How often during the growing up of our disabled children do we British parents, for all the fine words that come our way about ‘partnerships’, realise that the truth of the matter is that we are very much second to the professionals, in their view? PHP challenges us by demonstrating what parents, helping parents, can achieve.
Secondly, in San Jose, California, Mimi Kinderlerher, Director of Consumer Services at the San Andreas Regional Centre, introduced me to the most radical idea of my whole journey – an innovation in services’ delivery in which I have no doubt California leads the world: a State policy – implemented through State legislation, that puts non-profits at the heart of a totally unique services’ delivery system, solidly based in a services’ Entitlement enshrined in Law – the Lanterman Act.
Evidence-based public policy is the coming thing; it’s happened in the medical world; it’s beginning to happen in education. As the culture of contracting public services engages the voluntary organisations, demands for evidence-based statements of ‘added value’ are increasing. My own organistion, to secure a modest grant of £10,000 from the Primary Care Trust, was recently required to evidence the value of our work before the grant was awarded.
Yet where is the research on which evidence can be based? At the University of North Carolina, Chapel Hill campus, Dr Debbie Thorpe is leading ACT NOW, a unique research project into promoting well-being among adults with cerebral palsy. This single piece of work has continued to stimulate my own thinking and strategic planning around ageing and wellbeing in the context of independent living. Debbie Thorpe was alert, too, to the value of “the social web” and the notion surfaced of online social networks of ‘innovators’ and researchers in services for adults with cerebral palsy.
And so to Washington, to a visit with Stephen Bennett, Chief Executive of United Cerebral Palsy, that brought me back to matters “OBACE” – “on being a chief executive”- and my responsibilities as CEO for the direction, leadership, policy and strategy of the Paces organisation.
For the fourth of the four weeks of the Fellowship, a month later, I went alone to Sweden, to the Sixth World Congress of Conductive Education, and there returned to my core interest in the company of colleagues – practitioners and non-practitioners alike – enjoying the conversation of friends old and new as we explored developments from around the world.
I came home with a sense of the abiding importance of the passion of individuals, if the transformations still necessary to embedding public policy in local services’ delivery are to be achieved; of the need for new and renewed organisations and of celebrating best practice based on research evidence.
The value of the Fellowship is still unfolding: in the actions taken directly as a consequence and also of actions informed by the vision of people I met and the work they were doing.
What follows in this report is something of the flavour of that: an attempt to capture it, in a weblog that has been maintained since the Fellowship formally ended and which is now, according to statistics, receiving between 6-7 hits each day. The Fellowship was not a once and-for-all event, now history, but a continuing journey, the record of which is maintained in the weblog that can be viewed - and commented upon – at http://paces.typepad.com/paces/
In the entries that follow, I have retained the original Title, Category and Date of each weblog posting. In the original, the weblog permits the allocation of multiple Categories. This allows flexible searching and grouping, not possible, of course, in print. Therefore, for easier reading here, I have re-grouped the weblog postings under five broad headings:
(a) People. Places. Ideas;
(b) Practice. Research. Policy;
(c) Being a Parent;
(d) Organisation: Governance. Management. Futures.
(e) eCommunications.
My hope is that in reading this report, the reader will see the Fellowship embedding itself in the continuing journey for change on behalf of those with cerebral palsy and their families.
Norman Perrin
March 2008
In fulfilment of the terms of the Travel Fellowship awarded and undertaken in 2007.
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The full report is available online.
Some other links found in 2021:
Voice of the Cerebral Palsied of Greater Vancouver
Yoshi Tanabe - from May 2016
Glenda Watson-Hyatt - on Facebook
Mary Ellen Peterson - interviewed in November 2015
Mimi Kinderlehrer is now retired.
Stephen Bennett - in the UCP Annual Report 2012
