My previous post scratched at the surface of thinking about "Work, Citizenship and Orthofunction". Andrew Sutton picked up on it in "Adults' Voices - Three Bloggers". I think he gets somewhere near the nub of it in describing our society as one that "has little real idea of how it thinks of children with developmental disabilities, what it really wants for their future lives".
I read a thought-filled blog post a couple of days ago, that might be worth a couple of minutes of your time too: "Barriers to Inclusion for Disabled People" by Charlie Willis of the Youth Forum of the European Network of Independent Living. As I read the blog, and agreed that everything he wrote was true (and most necessary), and that although there was so much more to be done (for an instance of which, see a blog post this week by Chris Hatton on "Housing benefit?"), still the thought grew that the language of 'Rights' and (especially) of "Barriers" has become the pervasive language for discussing such matters.
At one point Charlie Willis touches, for me, a raw nerve and seems to point to something beyond 'Rights': "Services are no longer designed in a way that embraces the opportunities that disabled people could have." To which my instinctive unspoken response was 'absolutely - but when were they ever, Charlie?' But if I'm not persuaded by Charlie Willis's brief allusion to an earlier better age, I wholeheartedly endorse his view that there could be a different way of designing services. You see, the raw nerve was having just read my daughter's latest NHS assessment and had yet again that pit-of-the-stomach-churning experience of seeing, through the eyes of professionals, all that she cannot do, all that she fails to be, as the basis of her care plan. What would an assessment be like, what sort of care plan would result, if "services were designed to embrace the opportunities she could have"; if our society had "any real idea" what it wanted for the future lives of children with developmental disabilities; if, as in the framework for 'citizenship for all' devised by Simon Duffy, director of the Centre for Welfare Reform, service design was explicitly based in Love? Too radical a thought?
I'd like to point you towards something else, just published, from Simon Duffy, with a Foreword by John O-Brien: "Love and Welfare". (The link will take you to the website of the Centre for Welfare reform where you can download a .pdf copy of the essay.) Simon contrasts our modern welfare state with a "loveable welfare state".
The former he characterises as having been "designed in a way that brings with it deep and ongoing problems. It is:
- Paternalistic - it functions like a giant state-run charity
- Negative - it defines people by their needs, not by their gifts
- Materialistic - it expects too little from people and from life
- Meritocratic - it centralises power and treats people with disrespect
- Individualistic - it undermines the role of the family and community."
"A loveable version of the welfare state is one that is:
- Just - where we recognise our rights and our responsibilities to each other
- Humane - where we see each other as gifted, valuing our vulnerabilities and dependencies
- Spiritual - where we know that life is about flourishing and developing
- Egalitarian - where we are equals, working together as fellow citizens
- Social - where we create communities where we can contribute and belong."
My interest, as ever, is conductive education; in particular conductive education across the lifespan; most especially for those adults who as children had developmental disabilities. If this speaks for you too, I would like to hear from you.