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books and stories by people with developmental disabilities and their families

September 21, 2012

The writing / modeling team of The ABC’s of Ability with facilitator and photographer. From Left to Right – Sky, Christine, Siobhan, Susan, Larry, Cheryl, Peter and Tricia.

Last year, at a BC People First conference, one of the things that was mentioned as something that has changed recently was “We [people who have been labelled] write books!” and they listed some that I’d never heard of and I was also aware of how some of these books come and go.   For example, while I’ve read quotes from Carol Dauphinais, Living with Labels and Lies, for example, I’ve never actually held a copy.   My goal is to own copies of each so that we can make a display for our book events at Spectrum Press, and to make an annotated list so people can track these books down.

Thanks to Fred Ford for getting us started on this list.   If you know of other books, please let me know so I can include them.   I’m really just getting started and I know I have to sort through my shelves…   Some of these books are hard to get hold of, but if you know of a source, let me know as well.

Alberta Association for Community Living Stories of People Moving into Community.   (I will find my copy of this and make a fuller notation – I love this book).

Phil Allen, Phil Allen

All We Want To Say: Inclusive Research Project Part 1

All We Want To Say: Inclusive Research Project Part 2

Arnold Bennington, The Arnold Bennington Story (Fred gave me a pdf version of this book, and over the years Arnold gave me a few different versions).

Brian and Joe’s coffee shop. Scariff, County ClareArticle about these books. 

C.L.B.C. (Maria Glaze, Ed.) The Power of Knowing Each Other: Stories about Informal Safeguards Told By B.C. Families (download site).  
Jim Champion’s book – My Story

Carol Dauphinais, Living with Labels and Lies (2001).
Barb Goode, The Goode Life: Memoirs of Disability Rights Activist Barb Goode

Janice Fialka, It Matters: Lessons from my son.   This site also includes other books by Janice.

Hughes, The Wheel Always Turns In Circles “Life Stories Project”

Inclusive Research Project. 

Patrick Kearney (with Kelley Johnson), This was my life: I’m here to tell it.  The Life and Times of Patrick Kearney.   Clare Inclusive Research Group

Kylie McClelland.   Extreme Parenting: Raising children who have disabilities.

Gerard Minogue, Jo Rynne, Kelley Johnson, Lance Cooney, Pamela Luque and Patrick (Sonny) Kearney, The Garden Story  No Longer Research About Us Without Us Project

Oral Histories of Leaders with Developmental Disabilities in the Self Advocacy Movement (videos and transcripts).

Oral Histories from Canada People First (I have a pdf of this that I’ll track down)

Susan Powell, Larry Wells (photographer), and a team of inclusive researchers, The ABC’s of Ability: an ABC book about the lives of adults with disabilities

Karin Melberg Schwier, Ed.  Speakeasy: People with Mental Handicaps Talk About Their Lives in Institutions and in the Community.  

Karin Melberg Schwier, Ed.  Flourish: People with Disabilities Living Life With Passion. 




2 Comments leave one →
  1. Lyn King permalink
    September 21, 2012 5:07 pm

    Aaron- another amazing book written by a young non-verbal woman is “Annie’s Coming Out”. It is now available free as an e book at
    It was made into a great movie in the ’80’s called “The Test of Love”. They have now made it into a dvd- there is a link to purchase it at this site too.

    Another great book is “I Raise My Eyes to Say Yes” by Ruth Sienkiewicz-Mercer and Steven Kaplan.
    Both of these women were incarcerated in state hospitals for the disabled and made amazing connections with outsiders who helped them share their stories and escape their prisons. I first encountered these books when I was researching my final research project for my BCR degree a decade ago.
    I was able to find copies of these books through

    • September 21, 2012 6:09 pm

      thanks so much Lyn 🙂 i’ll include these when I update this post. aaron

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