We went to the movies at Five Star Cinema in Chanhassen on Friday, loaded up with popcorn and gummy fish to watch “Me Before You.” Our family sat in the middle row, my 12-year-old beside me. We were here to see the story of “living strong” in the face of disability. Instead we watched a depressed, disabled man commit assisted suicide.
As the parent of a child with disabilities, I’d argue that this movie sends all the wrong messages: That disability is worse than being dead. That children with disabilities add so little to our lives that parents should help them die.
I know something about this topic. My son suffered a brain injury and changed from a healthy child to a terribly damaged one — in the time one breath takes. For months after the injury, I fought and kicked to make him well. I lay on the hospital floor crying, since everything was gone. I couldn’t imagine any scenario where this would end well.
I was wrong.
The way Porter’s “disabilities” changed us sneaked up at first. I watched the man in Target curse over the long wait at the checkout line. I watched him, but I couldn’t understand. I didn’t hate register lines any more. I hated the smell of a hospital room and the plastic feel of an IV line when I held Porter’s hand. Annoyances and little irritations did not matter.
It was brutally hard at first. The diagnoses dribbled in: brain damage, intractable seizures and developmental delays. I struggled and resisted and wanted so badly for him to go back to who he was before the injury.
But one thing never occurred to me: I didn’t wish my son would die.
Movies like “Me Before You” make it seem obvious that a person faced with disability would opt for death. The corollary is that a sane mother would support the suicide. She’d warm up the car like the parents in the film and head out for the trip to Switzerland. There’s only one problem with this plot line. It’s horribly wrong.
I don’t mean to sound harsh. I didn’t grasp the depth and meaning of my son’s “disabilities” until we all lived them. The things he brought into our lives were the opposite of what I imagined. Instead of a life that was a skimpy version of mine, he showed how big a heart could actually be. He didn’t guard his vulnerabilities, and he changed them bit by bit into better copies of themselves. The shift was so profound that I can’t imagine any of us before the injury. I’m struck that my reaction was different from the parents in “Me Before You” who wanted their child to live but in the end capitulated to his determination to die.
Suffice it to say, I don’t plan to help kill my son.
Psychologists have studied this phenomenon. When able-bodied people are asked to guess about the experience of those with disabilities, they imagine sad scenes through an emotional pinhole. They picture small, balled-up lives, lonely and flat. They imagine everyone is just waiting for it all to end. But if you ask any of us who truly know them, you wonder which life is which.
My son’s life is radically different from that picture. He’s the best-adjusted person I know in so many ways:
He has no interest in money. When he was in second grade he received his first lunch card. He blew the balance the first day buying water bottles for everyone in the cafeteria.
Once at a park, he stopped for 10 minutes to watch wildflowers bobbing in the breeze. He stared and smiled and reached up in the air. “Angels,” is all he said.
He is oblivious to race, ethnicity, age or abilities. When he sees a person, he grins and flaps his hands excitedly. His default setting is a hug.
Porter’s injury tilted our lives sideways. Yet, to Porter and all people with disabilities I say this: I wouldn’t want my life without yours.
Sarah Bridges is the author of “A Bad Reaction,” a memoir about finding the courage to keep moving forward after her son Porter’s severe brain injury.