Some of you remember Walker’s Gift, a post about a talk given by Ian Brown, author of The Boy in the Moon. Brown's son Walker has a rare genetic condition and significant disabilities. Brown talked about how doctors never addressed the central question of the meaning of Walker’s life:
"It wasn't the keeping him alive or happy or from hitting himself that was most hard, it was that I didn't know what the meaning of his life was. Or whether he had an inner life. The most important question of all was about his soul. I don't know how you measure that in the medical world. That matters to the parent and it matters to the disabled child."
My son Ben is pictured above. I think many of us wrestle with the ‘why’ of our children's lives when their gifts don’t fall within conventional measures of success. And more importantly, with how we can ensure our child has a rich, and not diminished, life.
I’ve been reading The Four Walls of My Freedom, a memoir by Donna Thomson about raising her son Nicholas, now 21, who has cerebral palsy and is physically-dependent.
Thomson introduces us to the Capability Approach, a model developed by economist and philosopher Amartya Sen as a way of looking at poverty. But Thomson applies it to life with disability.
“The key idea of the Capability Approach is that social arrangements should expand people’s capabilities, or their freedom to promote whatever activities and lifestyle they value,” Thomson writes. “Sen argues that the central concern of having a decent and valued life worth living is that of freedom. It is not money and it is not 'accomplishments.' The approach examines the range of possibilities for human flourishing within a given set of circumstances, especially circumstances involving adversity.”
Thomson shares how she aggressively pushed for surgeries for her son to relieve unbearable pain from a dislocated hip that kept him in bed. “I wasn’t ready to give up on an active future for Nick,” she says. When a second surgery doesn’t yield the hoped-for results, she has to acknowledge that she expected too much from doctors.
“Now, I no longer hope for a future full of active verbs for Nicholas. I have accepted that he chooses to remain in bed almost all of his days because that is where he is most comfortable. Nicholas’ capabilities of being pain free and maintaining his dignity through choice and self-direction merge in his lifestyle nowadays. The German film director Werner Herzog once made a film about people with disabilities whom, he said, ‘experience the world on a very reduced level, but very richly.’ The riches that Nicholas enjoys are his friendships with his caregivers and with his friends and family.”
Thomson talks about how human worth is bestowed through relationships. “The essential worth of another is received love.”
Sen would describe Nicholas' decision to stay in bed as an adaptive preference – a choice one makes in circumstances of deprivation when other choices aren’t possible. “Nicholas exercises his adaptive preferences by saying that he is no longer interested in events and activities outside of his bedroom," Thomson writes. "But Nicholas prefers to view this as anything but tragic. There may be an important game on television that he doesn’t want to miss, or a new computer game to try out. He chooses a series of interesting activities to pursue each day within the small sphere of his room, and he is happy.”
This drives home our responsibility to look to our children – not to common cultural perceptions – as to what brings happiness. “…it is part of our job as people who love someone who is very dependent to redefine happiness and achievement,” Thomson says.
She notes that it’s challenging to measure the extent to which someone has a life they value. She shares an index she used to determine wellbeing in her family. Each member rates themselves in areas such as empowered to act; self-direction; harmony with nature; spiritual state; inner peace; play and fun; meaningful work; education and learning; beauty and creativity; community support; friendship; family relationships; and four elements of health.
Although Nick doesn’t speak, he seems to communicate well through a voice device. I’m not sure how an index like this would be used when the person can’t express their thoughts well.
Thomson goes on to call for a public/private partnership in supporting our most vulnerable citizens. “A fair trajectory for my caring years should not include me changing Nicholas’ diapers when he is 35 and I am 70.”
I haven’t finished reading the book, and Thomson’s suggestions for public policy changes that will give people with disabilities freedom to choose the lives they wish are yet to come. For example, I skipped ahead and noted that Thomson suggests parents of children with severe disabilities should be offered a residential placement at age 15. If the parents choose to keep their child at home, they should be entitled to the equivalent care costs to be used in the family home.
I am enjoying this book because I like the idea that we must redefine our notions of happiness and achievement to fit the needs, desires and values of our children. I’m still a bit fuzzy on how to determine what my son values most when communication is a challenge, and how to make it a reality given some of the big-picture barriers.