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Book Review: People with Intellectual Disabilities: Towards a good life?

December 30, 2011

People with Intellectual Disabilities: Towards a good life?   Kelley Johnson and Jan Walmsley with Marie Wolfe.   The Policy Press, 2010.   About $40.00 Canadian.

British researchers Kelley Johnson and Jan Walmsley are well known in the field of disability studies for their innovative work around inclusive research, in which people with disabilities are trained to conduct, record and present research about aspects that are meaningful in their own lives.   Marie Wolfe is an Irish self advocate who “sees it as her vocation” to advocate for the rights of people with intellectual disabilities.   Together they’ve written this rather wonderful book which deserves our attention.

There has been a great deal of discussion about what makes “a good life” for people with disabilities over the last couple of decades.   Much of this is based on the work of Dr. Robert Schalock and others looking at what qualities are in a good life for everyone, and then extrapolating from this to the lives of people with disabilities, often with a numbers-based quantitative focus.   Johnson and Walmsley approach things from a somewhat different angle, looking more directly at the lives of people with disabilities through a social construction lens and then gathering evidence from mixed research methods to think through how people with disabilities have been positioned as the receivers of services, citizens and neighbours, and how they might be included in the future.

I am a great fan of Johnson and Walmsley (google either or both of them and spend a day looking at their work to get a whole new sense of what’s happening in the world) and I like how they’ve grounded what they know about recent research, which is a great deal, with Marie’s contributions about how she lives her own life and what makes it meaningful and “good” for her:

 “I like it when I don’t have people telling me what to do kind of.  My own life.   When I am my own boss.   That’s how I like it.  Just having my own space you know.   Sometimes it can get a bit annoying if you don’t have enough to do kind of.

            “I would like to keep doing the work I am doing and keep doing what I am doing.   As long as I can.   And as long as I am helping somebody I am happy.   As long as somebody gets something out of it I am happy you know.”

 Marie’s ideas are broken down into themes which Johnson and Walmsley expand upon to “explore some of the ideas and theories that underpin Marie’s view of what a good life is.”   The authors look critically at how the idea of a “good life” has been constructed in Western Civilisation, and particularly how this worked (or did not) for minorities and those with less power.   The difficulty is that without “clarity about underlying values that drive policies” we can end up with “confusion in practice,” “a superficial view of what terms like ‘inclusion’ . . . mean,” and no “real coherence” – they ask is a good life just about having one’s own house, a job and relationships?  And of these, how many would one need?

The idea of a “good life” for people with disabilities is very new, Johnson and Walmsley assert, and historically even the most progressive standards have been more directed towards an “average” life, a “normal” life or an included life.   So how is it that, while people with disabilities still wrestle with prejudice, poverty and lack of access, and lack of free choices, we’ve moved on to “good”?  What does it mean?

This book provides a context for many of the discussions around how supports for people with disabilities might be organized and led by them and those who care about them by examining a wealth of quantitative (numbers based) and qualitative (story based) research.   Opening the book at random to give you a sense of this, in just two pages, the authors look at how to “disentangle” activism and how this relates to the need for a “vital” personalized, individualized response – a good life is different for each of us.   They then move on to the reflections of a interviewer as she realized, looking back on her notes, how easy it had been to edit and direct the stories of her contributors with disabilities, despite her intention to include.  “Rhetoric from academics, advocates and campaigning groups can paradoxically play into the hands of those who wish to minimise and simplify a complex set of problems,” they write.   They then examine empirical evidence from a study of the actual lives of people with disabilities and begin to dissect the idea of “Worklessness, in an age when citizenship is all too often conditional on a relationship to paid employment” and the kind of extreme poverty that can be a central feature in the lives of people with disabilities.

I was particularly glad to see the roles of paid supporters covered in a thoughtful, considerate way – so often paid supporters are discounted, rather than brought into these conversations as valued and informed participants.   I also very much appreciated what is essentially a history of the idea of “capability” and “reason” as it applies to the idea of informed decision-making as a necessary part of citizenship.   These are ideas that are so embedded in our culture, and so impactful on people with disabilities, that it was great to see them so clearly defined and delineated.

Who might benefit from this text?   It is always too easy to sort out the practice of supporting people with disabilities in their communities from the relatively new field of disability studies in universities, and think they are unrelated.   This book might be in danger of being thought of as merely a text book for such courses – and while it’s a great text for disability studies, this would be a great shame.   Policy analysts certainly would find this a good text to contextualize their work.   Agency leaders would find it, I think, a wonderful thinking through of the rationale behind what we’ve done and what we do.   Literate and informed staff would be excited by the accessibility and logical progression of the text, and the drawing on of various kinds of resources.   Staff trainers would find much to draw on in their own work from this text.  Given all of this, this might not be an easy read for those unused to reading research based texts but if you are going to read one book this year, and you care about people with disabilities, this might be a great choice.   Self advocates might enjoy the parts of the text which come from Marie – these in themselves could lead to great conversations about people’s lives, aspirations and contributions, and everyone, from board members to staff and families, seems in general agreement that the first hand stories of the lives of people with disabilities are often what move us to action and what we remember best.   That Johnson and Walmsley have used Marie’s stories as the basis for an expansive conversation about the complexity of how history and cultural pressures have shaped perceptions of disability, and how we might best work together to seek new possibilities, seems an excellent method.

I definitely recommend this book.

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11 Comments leave one →
  1. December 31, 2011 7:32 am

    Very interesting Aaron! The “battle for good” is ongoing. Our organization featured the tag phrase “a good life” in recent years and the basic thinking was that it wasn’t enough that people with intellectual disabilities be “allowed to exist” in society, so we wanted a word in there that would trigger that very question – why a good life? Now we also talk about a welcoming community that values people with intellectual disabilities as citizens. It’s not good enough just to tolerate their existence.

    In many ways existence thinking has been the most prevalent attitude, permeating our schools and extending into community-wide systems. Systems thinking is now the most critical barrier to a good life – even those agencies that have truly embraced this thinking and are unwavering in their desire to make it happen are finding that government funders, unions, and other influences make it difficult to situate the problem of exclusion with the community, rather than with the individual.

    Current systems tend to either remove the individual from society (group homes, sheltered workshops, and other living and working alternatives not shared by the rest of society) or to see the individual as the problem – that they need to be “given skills” to “fit in.” We all need to grow – that’s part of being human. But society also needs to grow – and recognize that difference is a part of who we are as a species, as communities, and as a society. A lot of the “day programs” that are supposed to be “giving skills” are nothing more than lifelong warehousing of human cargo.

    I’ve been 20 years in this field (a lot when you are “only” 43) and it is not as complicated as systems make it out to be – individuals with intellectual disabilities want the following (top four I have heard over and over): a home (apartment, condo, house), a job (paid minimum wage or better with respectful coworkers), friends (who are not paid to hang around with them), and a spouse (yup, they want to have sex, love, and be loved in an adult relationship with another person).

    I have ordered the book!

  2. January 1, 2012 2:24 pm

    Thanks Aaron for your very positive appreciation of the book and the Health Checks work. I’m pleased to make the acquaintance of your organisation. Will sign up for updates.
    In the meantime, you might like a look at my website
    http://www.janwalmsleyassociates.com
    It has some more resources and information about the work I’ve been doing

    • January 2, 2012 7:26 am

      thanks Jan – i should have used that link 🙂 it is a really great site. aaron

  3. Kelley Johnson permalink
    January 8, 2012 1:10 pm

    Thanks from me too Aaron. We did see it as a starting point for discussion so I will be interested to see where people take it. Have signed up for updates as well.

  4. Jerry Laidlaw permalink
    January 12, 2012 6:56 pm

    I cant remember my user name and pass word can you send them to me. and I want to order this book.it sounds great

    • January 13, 2012 5:41 am

      Hi Jerry – do you mean your wordpress account username and password… hmm.. i wouldn’t have that info but from your previous comments you were using jerry.laidlaw@yahoo.ca so if you go to log in and then say you lost your password they’ll send you a new one i’d bet 🙂

    • January 13, 2012 5:44 am

      Jerry, I know you and Laura are interested in telling your story and in the idea of people of all different kinds telling their stories – you might like this book which is also by these authors and is one of my favourite books http://www.jkp.com/catalogue/book/9781843100614 I wonder if the library could get it or order it for you? say hi to Laura – i hear you are both meeting with Shelley and Jim on monday to talk 🙂

  5. Jerry Laidlaw permalink
    January 26, 2012 7:14 pm

    how do you get to your book store online I want to order the booktowards a good life

  6. Ernie Baatz permalink*
    January 26, 2012 7:38 pm

    The book is available on their publisher’s website:
    http://www.policypress.co.uk/display.asp?K=9781847420688&sf1=keyword&st1=Towards+a+good+life&m=2&dc=13

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