reflections related to disability advocacy, family and (needed) cultural change
Sunday, March 01, 2009
Book Review: THAT Went Well by Terrell Harris Dougan
We enter the life of author Terrell Dougan and her sister, Irene, of the book THAT Went Well through an exciting moment in the meat department of the grocery store where Terrell ducks the chicken her sister chucks at her for inisiting on buying nutritious food... We blink a little and Terrell sits us down and 'splains it all to us, in the style of that one friend we have who always has a funny story to tell.
The author and her sister were born in the 1940s and they and their family were among the pioneers who laid the groundwork for the advances in education, community living and disability-respect that families and people with disabilities enjoy today (not that we are done evolving!) We learn about Irene's diagnosis and the common 'treatment' of the day for children with cognitive disabilities which was institutionalization, the advent of special education schooling in Utah (spearheaded by their father!)and the inception of community living options--from grouphomes (legislation and grantwriting done by the author herself) to what she calls a SAM--a self-administered model.
We hear the story of a family of loving people with successful, interesting lives who willingly walk the tumultuous path of supporting Irene with committment, warmth and humor. They take on the systems, the prejudices, the 'well-meaning' and the ups and downs of supporting someone with a disability who doesn't conform to the systems while spending a fair amount of time caring for aging parents and small children.
We hear stories of Irene, her family, her love of food, her relationships, her frustrations and behavioral challenges, her endearing quirks, her successes, the systems, helpful people, annoying people, people in-between and more. Some of the stories are hilarious and, as the mom a teen with a disability, some are heartwrenching.
This is the story of what it's like to be the sister of someone with a developmental disability. It's a strong dose of reality with an equal measure of hilarity and twinkling eyes--you feel the frustrations AND the love. And throughout it all is an unwavering belief in the community and most of all in her sister.
I enjoyed the book. I liked the firsthand view of the progress that has been made for people with disabilities in recent decades. And I LOVED Irene and Terrell's relationship--and their relationship with their community. There were chapters that absolutely thrilled me (like when the neighborhood firemen--who Irene visited often--came to her lemonade stand and made her a hit in her neighborhood.) And there were parts of the book that I admit scared me (like the repeated failures of systems to meet Irene's needs--and the amount of perpetual engagement success required...)
As a parent, there was much encouragement and there were many lessons in this book. I have asked my teenagers to read it as well. I don't know what their reaction as siblings will be, but I really want to know--I will keep you posted.
The author's website has a blog--I will be adding it to my blogroll.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.