I admit it, I've been feeling discouraged recently. I've been advocating hard for people with disabilities to be prioritized for COVID19 vaccines in Canada, but still haven't had success protecting our son. I was active every day on social media decrying the unfairness of Bill C7, the Medical Assistance in Dying amended bill that incredibly passed into law, now enabling disabled people and those with mental illness NOT at the end of their lives to access MAiD. Never mind that they aren't entitled to any services in the community that could offer them the support they need to LIVE a life with dignity and comfort. (Home care is not in the Canada Health Act, so not a right.) Sometimes it just seems an impossible hill to climb, protecting the lives of disabled people we love by changing the system.
So maybe it was fate that I received a book in the mail last month with a letter attached that included a request for my review. The book is called Our Life Our Way: A Memoir of Active Faith, Profound Love and Courageous Disability Rights by William R. Rush and Christine F. Robinson. William "Bill" Rush was an American disability rights campaigner from Lincoln Nebraska. Christine Robinson is a Canadian occupational therapist who met and fell in love with Bill at the 1988 International Society of Augmentative and Alternative Communication in California. Bill was the conference keynote speaker who delivered his remarks using a computer speech device called a "Touch Talker" with head stick access. Bill Rush was a man who was born with cerebral palsy and grew to successfully complete a degree in journalism, author several books and change the course of disability rights in America.
I have a special place in my heart for this book because our son Nicholas is also a user of AAC or augmentative and alternative communication. Nick uses a communication book with words scans that his helpers read. Nick says "Yeah" for the word he wants. But throughout his school years, Nicholas listened to his word choices via headphones and a Dynavox computer would speak his thoughts. Nick had switches to control the computer built into his wheelchair headrest but scanning with head movements through so many possible words to get the right one was tiring and slow. Now, he prefers the book and communication partners who can use a combination of strategies to understand his thoughts, ideas and preferences more efficiently.
Like other founders of the movement for disability rights in the USA, Bill Rush was a trailblazer. The film "Crip Camp" gave me a riveting glimpse of what obstacles lay in Bill's path in the 70s and 80s - obstacles that he overcame with steely determination and a talent for creating wily strategic pathways to accessing freedom and dignity for himself and others with disabilities. In Bill's kitchen hung this sign for any visitors or health aides to consider:
Our Life Our Way is about love and freedom. But it's also about allies and faith. And all of these themes intertwine so entirely that living by Rush's rule would be impossible without all of them. "Servant leadership" is the term that Bill coined to describe his approach to advocacy. Church for Bill and Chris was a wellspring of support, hope, belonging and allies. "My Church family at First Baptist is the first place in my life where I have felt a sense of belonging outside of my family," Bill remarked to Chris. Later, when the couple fought hard to marry without giving up Chris' employment and all their assets in a deal to keep attendant care for Bill, members of the church filed in to the government hearing as a show of community solidarity, expertise (the group included a lawyer) and witness. There will be no spoilers here - you need to buy this book. Read it to learn the couple's fate, but also to savour their pure sense of youthful and thrilling optimism and their unwavering vision of inclusion in combination with the power of community and commitment to God.
There's so much in Bill and Chris' story that makes this book one for our times. Bill's apartment neighbour was a KKK conspiracy theorist who was filled with hate. Imagining such a character might have seemed crazy five years ago, but not today. Bill had to use all his wits to access help from the law to protect him from this maniac. In the face of white supremacy, racism and ableism, many disabled people today are not so lucky.
I learned so many lessons about successful advocacy from this book. Most of all I learned about an American hero I had never known about before. And I am filled with hope that if we apply Rush's Rules today, we can come back strong because of our faith, our love, our study of the system and our allies. I feel so much better and I'm going to post Rush's Rules in Nick's room tomorrow.
