Self advocacy today

3 September 2019

Self advocacy today

I am proud to present the Report of a project I did with Alan Armstrong, BAROD, called making Sense of Self Advocacy Today.

We were welcomed by self advocates in 6 different organisations, from Dudley to Rotherham, Devon to Stowmarket. We found thriving organisations, doing exciting things. They have so much to learn from one another. If we could bring these amazing people together, who knows what could happen.

Here's our Reportrtr-report-12-june

Many thanks to RTR Foundation for their generosity in funding this project

Transnational Perspectives on the lives and experiences of people with learning disabilities

5 June 2019

I'm introducing our new edited book Transnational Perspectives on the History of Learning / Intellectual Disabilities in the twentieth century Intellectual_Disabilities_v3[10106].

Co-edited by me, and the brilliant Simon Jarrett, it contains chapters from authors in 12 different countries, as varied as USA and Taiwan, Australia and Ghana. All use life stories to illustrate the real life impact of different policies and practices on people.

Until this book, only the Anglosphere, Scandinavia and German speaking countries had even a tiny history industry. The history of learning disability, much neglected even in the west, had barely a flicker of life elsewhere. Life stories as a means of understanding the experiences of people with learning disabilities and their families, well established in USA, UK, Canada and Australasia for 50 years, was quite new to authors in other parts of the world. It's been gratifying that the task of writing for this book has prompted 2 contributors to do more work on life stories in their own countries.

It's been an amazing experience to edit this book. So exciting to discover that in interwar Czechoslovakia there were incredibly progressive policies. That in the Communist bloc, people with mild learning disabilities were welcomed as equal citizens, part of the workforce, but those who were not able to be productively employed were held in abysmal conditions. To learn that in both Hong Kong and in the UK the 1990s saw a high point of progressive, optimistic policies, with a falling back, both in resources allocated and in vision of a better life, in the twenty first century.

What has been strange and sad is the discovery that across cultures, people with intellectual disabilities tend to be excluded and looked down upon. This cannot always be blamed on eugenics, though that was incredibly influential in Europe, USA and Australasia. A combination of economic anxieties intertwined with traditional belief systems were powerful influences in both Taiwan and Ghana.

More positively, in every chapter, the importance of families. In several countries - Taiwan, Ghana, Hong Kong - learning disability was largely left to families until the closing years of the twentieth century. In Greece and Hungary this was true into the mid cenury. Even in those countries most influenced by the USA - UK, Australia, New Zealand - families have remained the bedrock of support. And, more striking still, it has been families at the forefront of agitation for a better life, closure of institutions, support for lives in the community. In some places at some times it took a great deal of courage to stand up for a disabled child, not only in Nazi dominated Austria, but also in Czechoslovakia, Taiwan and Hong Kong.

The language issue loomed large. In Ghana, because disability was largely managed within families and rural communities, learning disability lacked a name until recently. In Hungarian and Mandarin Chinese the preferred 'people first' construction 'people with a ...' is just not possible. In Ghana, people with Downs are labelled as 'nsuoba', meaning spirit or water children. Does language matter so much? It's pretty difficult to research the history of learning disability without labels. A feeble reason to have them, maybe. And there are neo-colonial overtones to the debates about language, with terms regarded as 'progressive' usually originating in English or German speaking counties.

This brings me onto the United Nations Convention on the Rights of People with Disabilities. This very aspirational document is hard to square with the very varied sets of assumptions about learning disabilities revealed by the collection of chapters in the book. Is it, I wonder, an imposition of Western assumptions onto the world. Not the first time, it's happened.

This is, we hope, not the last word on transnational histories, rather a tentative beginning. Missing are some really important narratives, from China, India, South America, Russia, Central Asia, not to mention places much nearer home, like Ireland, France, Spain.

The book is not cheap - regrettably. £75. It's also an ebook available on kindle for £26.99. Policy Press is the publisher, AND we have a 20% discount currently. Use this link to get it.

One Voice? Or Many?

10 March 2019

In the past week there was energetic debate between Simone Aspis and family advocates about who should speak for people with learning disabilities. It prompted me to write this.

I wrote back in 2016, at the launch of Learning Disability England, that families and self advocates should stand together, that they have far more in common than divides them, and that the need for a loud and united voice to fight for a better life for people with learning disabilities and their families was urgent. That need has not gone away.

I believe even more that we should be seeking for opportunities for self advocates and family members to stand together, having had lengthy discussions with the mother of a woman with severe and profound learning disabilities for whom self advocacy is but a dream. That mother's argument that if she does not speak up for her daughter, no one will, is extremely powerful. It prompted me to reflect on my own experience of self advocacy, and the published literature, to reflect on the extent to which self advocacy includes people with more sever and profound learning disabilities, those, quite literally, without a voice. Whether it's for lack of imagination, resources or motivation there is very little evidence that self advocacy groups have made space for people with profound and multiple learning disabilities. Jackie Downer, a veteran of self advocacy in England, once explained it to me like this:

I’m so used to saying ‘my needs’, tough luck about the others. They’re somewhere else. It can work but it takes time, and we, as people with learning difficulties, we got no time.

She makes a fair point - self advocates have enough on their plates. All the more reason then to abandon tired old arguments about who has the right to speak. Instead, we could use the energy released to work out ways for self advocates to share platforms with family advocates to take the fight where it is really needed - for resources and commitment from those in power to ensure that a good life is there for everyone.