A few weeks ago, we had the Pennhurst traveling exhibit come to the office. I learned more about Pennhurst in the last month than I expected. I learned about the people who blossomed there, made friends, worked, and left for jobs and families. We need to question our approaches, and to make sure we are holding ourselves to the highest standard- holding human dignity and respect as our top priority.
One of the parts of the exhibit that was a reminder to me were the names of the famous people who started to speak openly about their children who were born different. These folks stepped out before Bill Baldini told us about Pennhurst, during the early 1950s. That led me to reflect on reading.
I spent most the summers of my childhood at the tiny public library in my town. My favorite books were biographies and autobiographies. There is no way to experience someone else’s life, but you can improve your ability to listen and to learn, and reading the stories of others really can help.
There are many books written about being a person with an intellectual disability, raising a child who does not develop according the usual rule book, or losing a child with a disability. Here is a list of a few you can consider. You can get a longer summary of the book online and many will be in your local public library.
Riding the Bus with My Sister Rachel Simon contemporary nonfiction
A contemporary nonfiction story of Rachel, who rode public transportation buses somewhere in PA with her sister Beth. It will challenge your assumptions about what creates a life of meaning. I had the privilege of meeting Rachel and introducing her with a poem called “Get a Transfer.”
The Story of Beautiful Girl Rachel Simon fiction (but close to home)
A nonfiction story which could be set at Elwyn or Pennhurst. There is much truth in the history described in this book. A KenCrest staff was interviewed as a piece of this book.
An Uncomplicated Life: A Father’s Memoir Paul Daugherty contemporary non fiction
A dad reflects on raising a child with Down Syndrome.
The Child who Never Grew Up Pearl S. Buck nonfiction
One of the ground breaking nonfiction books of its time, 1950. Pearl Buck describes her and her daughters’ lives, taking place in nearby Vineland, New Jersey.
Angel Unaware Dale Evans nonfiction
Yes, for those of you who are old enough to remember, Evans was the wife of Roy Rogers. Dale spoke publicly about their child. The book, published in 1953, was another of the books which took disability out of the dark spaces in life and spoke of the joy all children bring to life.
Lost in a Desert World Roland Johnson, as told to Karl Williams nonfiction
The life experience of Roland who passed away a few years back. He is part of our KenCrest history, a participant in Lifesharing and an outspoken leader with a self-advocacy organization we helped to create. Roland talks of his experience at Pennhurst.
PS. In my high school years, I had some summer jobs shelving books and staffing the library desk for the summer school. And yes, on one special occasion, I even had one teenage boy hop up on the desk and sing, “Marian, the Librarian” from the Music Man.