Edited by John O'Brien & Carol Blessing, leaders of the inclusion movement share their invaluable learning.
Editors: John O'Brien and Carol Blessing
Reviewed by Simon Duffy
The Centre for Welfare Reform’s biggest debt is to the social innovators whose ideas are described in this book. In a series of interviews with the key personalities from the Inclusion Movement, we discover how moral outrage at social injustice has been transformed into practical tools for creating a fairer and more inclusive society.
At the centre of the book are interlocking accounts of citizenship. It is not enough that citizens have rights.
Giving back to the world, not being stuck behind a wall of services so says Beth Mount, the first pioneer of person-centred planning.
Seeing that everyone is born with gifts and working for need a world where everyone can share them so says Denise Bissonnette, a leader in supported employment.
Creating a world together with others, not consuming so says Mike Green, a leader in asset-based community development (ABCD).
Belonging to this place and taking responsibility for your belonging so says John O’Brien, the inventor of the five accomplishments.
The fact that all these contributors are from North America does not mean the Inclusion Movement is restricted to North America. But it is no accident that the Inclusion Movement began, like the Independent Living Movement, in America.
The reasons why these ideas first took root in America are varied and will be disputed; but clearly there are live tensions within American society that, at the very least, open up a different and valuable perspective on human life:
These three strands can all be heard in the stories of these early pioneers of inclusion. In particular many were inspired by the Civil Rights movement and the anti-war movement to believe in the possibility of social change.
But the primary inspiration for the Inclusion Movement was moral outrage at the exclusion of disabled people from ordinary life. This exclusion is not just found in the large institutions that littered the Western world at the end of the twentieth-century, it is also found in the classrooms that disabled children could not enter, in the workplaces that excluded disabled people, and in the day centres and care homes that cut disabled people out of ordinary communities.
Clearly the Inclusion Movement has much in common with the Independent Living Movement. But the Inclusion Movement is primarily orientated to those disabled people who had no direct voice - people with severe learning difficulties. In turn this has meant that its primary advocates (although Judith Snow is a powerful exception) have not always been disabled people themselves: often they are professionals, family members or impassioned citizens. This has led to criticism of the Inclusion Movement.
The Independent Living Movement has rightly believed that disabled people should be enabled to take their rightful place in society without being patronised, without becoming objects of charity. Instead disabled people have demanded their rights: the right to full access, the right to equal opportunities, the right to support, the right to control. These are fundamental rights and they should not depend on the attitude of society, services or family members. They are absolute.
The Inclusion Movement has been forced to confront some of the fragility of rights. On their own a right cannot deliver social justice. For example, Jack Pearpoint who developed MAPS and PATH, has seen how person-centred planning stops working once its made compulsory:
When it is just one more requirement that staff have to meet, it has to do with system requirements, rather than noticing, focusing on, and developing a person’s capacities.
For a UK audience, where person-centred planning has effectively been industrialised by the state, this is a powerful warning. Some of the most important things in life cannot be achieved by rights alone. Love and an attentive attitude to another human being is not something that can be made obligatory. We may able to ban or punish abuse, but a right to be loved, to be respected or to be listened to is worse than useless.
It is interesting to note that the people who invented person-centred planning, appreciative inquiry and the other person-centred approaches described in the book are often very reticent about claiming too much for their own tools. They realise that a tool is merely a way of helping someone do better ‘work’ but that its success is determined more by the intentions, attitudes and skill of the individual than by the tool.
Also, rights, on their own, will not bring about social justice for people with the most profound disabilities. So, the search for social justice cannot only be a political process.
This has also led to criticism of the Inclusion Movement. It seen as too submissive, because it does not take the high road of political lobbying and direct action. Instead it focuses on supporting families, designing better support solutions or changing professional roles. It is necessarily somewhat adaptive. It works with what is there and tries to make the best of things.
Many within the Independent Living Movement are suspicious of families, suspicious of services and suspicious of professionals. They believe that self-advocacy and the proud assertion of human rights is the way forward. But this criticism - while understandable - is misplaced.
The low road is much less glamorous than the high road of political action. On the low road you have to walk alongside those who are trying to do the real work of loving, supporting and transforming. Families, services and professionals are essential partners in this journey. It is only on this low road, where we work in partnership, that we can find out what really works. Sometimes we can only understand what is worth fighting for when we’ve tried to achieve it for real, within the constraints of current systems.
The Independent Living Movement and the Inclusion Movement have grown up together, from the same soil, inspired by the same things and with a shared hope of building a fairer world. Hopefully we can begin to see a greater level of mutual understanding and partnership between these two movements in the coming years.
Not that the Inclusion Movement has not grown and developed. The book demonstrates that the early pioneers are still learning and reflecting upon their journey along the low road to inclusion. For instance, there is now an increasing emphasis on finding a more universal language with which to share their experiences. It seems to me that talking about citizenship and real wealth is a helpful way of opening doors to other people. The older language of ‘normalisation’ or even ‘social role valorisation’ now feels less useful.
Also the notion of social innovation seems increasingly helpful. Working with people on real problems in an unjust society means that we must innovate - find a new way of doing things. Naturally we then want to share what we have learned.
However it turns out that what we can share - the process, the tool or the system change - inevitably becomes commodified. Each time the innovation becomes something that people can teach and use to earn a living then it undergoes a transformation into something that is both more useful and more dangerous. Something that helps bring about change - but not always positive change. For any innovator this if often experienced as regret; for it is much easier to feel responsible for the harm that others do in your name than in any good that is also achieved.
However I think we are moving away from a period where trying to control tools - their distribution or their use - feels useful. We are moving towards a period where the capacity for innovation itself - not using tools but making tools - is the really interesting challenge.
We must ask ourselves how the conditions for real innovation be extended and shared. If citizens can, should and must create something new, simply in order to achieve citizenship, then social innovation itself becomes part of citizenship. Not just a painful process we must go through once to arrive on the other side - ‘a just society’. Instead we must learn, as the Inclusion Movement has learned, to keep creating and to see creation itself as a fundamental aspect of social justice.
If we are fortunate then later generations will look back on the contributors to this book with a deep gratitude. They will understand that the society that excluded disabled people or aborted disabled children doomed itself to sterility and joylessness. They will enjoy living in a world where not everything is fixed or defined and where people are constantly seeking to ensure that everyone gets to share their gifts with each other - whatever that takes. A better systems of rights and responsibilities will have provided a better framework for social justice - but it will also leave room for innovation, citizenship and the joyful recognition of the diversity of humanity.
The publisher is Inclusion Press.
Citizenship & Person-Centered Work © Inclusion Press 2011.
Review of Citizenship & Person-Centered Work © Simon Duffy 2011.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.