It's about Bill Rush, a journalist and activist with a disability he calls "significant". Not "severe". Just who he is. Bill sees himself as a problem solver and challenges everyone around him to be the same. He is a quadriplegic, he has cerebral palsy, without assistants he would have to live in an institution but that's a fate that he sees as not really living, that's just surviving. He wants to live, study, work, make friends, play chess, live by his own rules: Rush's rules. He meets Christine Robinson at a conference, and the book alternates between their voices, with the audiobook I listened to being read by Chris.
Bill talks with a touchtalker, hitting keys with a stick he wears on his head, up to eight words a minute. She is attracted to him because of how supportive and caring he was for her. She said he anticipated and took care of her needs better than the able-bodied men she'd dated. She was drawn into his problem-solving world, and I was too, the book pulled me in. I was barely 1/3 of the way through when I googled Bill Rush and learned that he died in 2004 at the age of only 49. The whole book, I was like PLEASE GET MARRIED ALREADY because I knew they were going to get married and I wanted them to have lots of happy years, but they had to navigate the crazy world that is the US healthcare system. Bill's caretakers were $8000 a month without medicaid. Unless laws changed, Chris would be forced to drain all her assets and quit working to get them both under the poverty line to qualify. But they did change laws, and made a way to protect her income and keep Bill's assistance at the same time. It took patience, letter-writing, and a what I can only describe as a PHD-level of understanding around US state and federal public assistance programs. I'm actually surprised they didn't draw more parallels between Bill Rush's chess playing and his activism... both activities take strategy and years of study.
Bill was certain that his relationship should be just that, a relationship. Chris was not to become another one of his caretakers that he needed to survive every day. Chris got to know him and said she felt like she "heard" his voice, in conversations in her head, in the way she thought of how he talked, even though he couldn't use his voice to speak. He just said "I tend to have that effect on people!"
He wanted to attend a bible study at a church. They said they'd pray for God to grow his faith so his cerebral palsy would be healed. He had a better idea - they could build an elevator. He rallied the congregation. Anyone can become disabled, anyone can need improved accessibility. We have the resources to design better systems.
The book moves quickly through the busy life of this loving couple - Chris takes Bill on his first canoe trip, Bill presses charges against a grand dragon in the KKK, Chris immigrates from Canada to the US, Bill testifies in DC. Eventually they do get married but Bill dies only a few years later, possibly from complications after being hit by a car, I think there's an implication that his medical needs were written off behind the cerebral palsy but the book isn't accusatory, just takes us all step by step along the journey. I really mourned though, if you've ever read a book that you just have to sit with for a while you will understand. It's been days and I am sad that Bill is gone.
What a lesson though. About how we should love each other, listen to each other, change our systems and solve problems and respect people. The themes are echoing through the other books I'm reading, but this was the story that's had the most pages about one person so far, with real people I got to know very very well, and I miss them.