From the outset, as I reported here, conversations with many people met during this Fellowship, I should have made repeatedly clear that thoughts and opinions expressed are my recollections only of our conversations, for which those who gave so kindly of their time are in no way responsible. This blog entry, and those that precede it, are not 'minutes' of meetings. Indeed, I deliberately took no notes of the many conversations preferring to avoid the intrusion and distraction of recorders, or even simple pen and paper notetaking. My aim throughout has been to absorb and reflect and draw general 'lessons' for Paces.
The Visioning document
The story CEO Stephen Bennett told me of how United Cerebral Palsy came to work with the "Institute for the Future", one of the leading 'think-tanks' in the USA, to produce a Visioning document is a tale worth telling that this brief blog entry will not allow. Sufficient to say that, like Paces and most charities, UCP thought it a pretty neat move to be into strategic planning; only to find ITFI regarded strategic planning several rungs down the ladder from Visioning. The output, in one of its forms, is a startling 4' by 12' wall display, a Vision, not for UCP nor even of 'disability', but a Vision of the world context in which UCP would be operating down road 10 years. Out of this came the notion, not of “Problems" that lead to identified "solutions”, nor even, as I was expecting Stephen to say, of "Opportunities" to be grasped. Instead, the Vision incorporates “Dilemmas" that need to be managed, charting a strategic course amongst and through irreconcilables.
In making available to me and to Paces, the Vision document in its leaflet form, Stephen has made available to us the work of one of America’s leading “think tanks”.
Much in the Vision document reverberates for work too on Paces'doorstep: there is much in here in, for instance, the ‘potent and agile network’, for CoSY, High Green WiFi & HGDT/HGCF; there is much for HGDT’s capital development of the Campus in, for instance, “The imperative to design our communites for healthy living”
The Virtual Conference
Prompted by Stephen’s express tour (normally three hours) through the UCP Vision document (especially ‘Tools’, one of the six ‘Headline Stories’ around which the Vision document is structured), my first thought was of video-link up for Stephen to present this document to our Annual Conference 2008. My next thought was to wonder whether: we might organise a virtual conference, with a real-world Sheffield audience; or might this be wholly online, all participants being joined up through their laptops; perhaps with new inputs from individuals spread over several days, with an ongoing discussion Forum; whether there were in Sheffield the ‘skills sets’ to make this happen?
Private sector
UCP went to the private sector for advice on how to conduct effective strategic planning; they went to the private sector for financial support to fund the Visioning programme; the American Association of Disabled Peoples, whose celebration of the anniversary of the passing of the Americans with Disabilities Act at Capitol Hill we went to as Stephen’s guests; the AADP went to the private sector for its support in making inclusion real, mainly ‘because it makes business sense’ (as Dr Christine Bellamy also said at the recent inclusion workshop in Sheffield).
Appropriately scaled, there is no reason Paces should not do something similar in Sheffield/South Yorkshire as part of the new Strategic Plan. David Body, as Chair of Trustees, is already heading Paces in this direction.
Cerebral Palsy is not measles
I forget the phrase Stephen used about the phrase ‘cerebral palsy’. But it was clear that he felt it was in many contexts largely valueless. An English phrase that comes to mind that he might have used (but didn’t) is “rag bag”.
I have read something similar in my research on the internet: that cerebral palsy is merely an “administratively convenient term” with little other value: certainly, it is not a diagnosis. Andrew Sutton, I recall, most frequently refers to ‘the cerebral palsies’. Often enough, I have myself said “Cerebral palsy is not measles; it is not a ‘thing’”. Emily Dolenz of UCP said something similar. I asked her, as a person with right-sided spastic hemiplegia, how she regarded cerebral palsy. She initially responded with the common observation that ‘everyone with cerebral palsy is different’ and quickly followed this with the thought that it was therefore impossible to develop one-size-fits-all cerebral palsy services. (This seems to me to lead to one of UCP’s “dilemmas”: if on the one hand we strive for inclusion, how can we possibly train and provide the 1:1 specialists required by every child with CP, if every child is different? But that is another story.)
I offered Emily the thought that if cerebral palsy was not a useful term, one moreover that derived from and was deeply embedded in a medical context, would it be better to adopt some such term as ‘neurocognitive impairment’. She herself seemed happy with the phrase ‘brain damage’ which, when explaining to others, she said that she likened to having a ‘stroke’ before birth. She then said something that startled me – though on reflection it should not have – and that was that her mother had been told that her ‘stroke’ occurred in (I think she said) when her mother was only four months pregnant; that her brain therefore had a further 5 months to develop and mitigate the effects of the stroke. From my researches prior to and also as part of my preparation for this Study Tour, I have become familiar with brain plasticity post-birth and throughout life. I had not considered that, of course, the growing brain is equally plastic in the months leading up to birth. This startling notion opens a whole new set of questions relating whether cerebral palsy is unhelpful as a label for what is a neurological or neurocognitive impairment and therefore of the importance of structured learning, especially in those cases where the ‘stroke’ is more severe or later in pregnancy, or both. Here is much too ponder on.
