LESSON 10

There Is No Independence without Interdependence

By refusing to see others as truly human, we also refuse to see ourselves as truly human. By rejecting life in others, we reject life within our own being.

—JEAN VANIER

What I have learned finally is that in asking for help I offer other people an opportunity for intimacy and collaboration.

—BONNIE SHERR KLEIN

I want us to see disability as sometimes (though not always) resulting in a dependency that is but one variety of a dependency that we have all experienced at some point and to which we are all vulnerable.

—EVA KITTAY

What Powell River Taught Me

SOME FEELINGS SINK so deep into the heart that only loneliness can help us find them.

The flight into the coastal town of Powell River, British Columbia, was as smooth as my certainty that I would once again be helping to make life better for people with disabilities. After all, I was a recognized North American expert. The workshop audience was mixed—mostly service providers, board members, city officials, government folks—and, in a departure from the norm, there were two people who received services from the sponsoring agency. It was the usual format: a couple of hours of brainstorming the perfect world for people with disabilities, followed by my summary and an “uplifting” call to action. The suggestions were familiar: curb cuts, jobs, therapy, more money for services and staff . . . I had no trouble reducing them to manageable categories. All except these two. “I want to have a big parade and give everyone balloons and flags to wave,” said a middle-aged man. “I want everyone to laugh and have a good time.” And, “I want to find someone to love, someone to hug goodnight, every night,” said an older woman.

Those two ideas came from the two participants with disabilities. They were ignored for the rest of the day. Something about them made my flight out of town bumpy and eventually shook me out of my professional complacency. I wrestled with the memory of them for months until I finally admitted that what those two people wanted—love, intimacy, joy, and celebration—was exactly what I wanted and didn’t have in my life at the time. My first marriage was disintegrating, and I was acting as if everything was fine. The realization slowly dawned on me that the only difference between me and those two souls was that they had the courage to admit it and to reach out. Who was helping whom?

The inescapable fact of life is that we are interdependent. We start life that way. Most of us will end life that way. It’s the tender periods in between that we have trouble accepting or admitting. Ask any world-class athletes the secret of their success, and they will answer that it’s the support of family and friends. They place it higher than talent and hard work. There is no such thing as excellence or independence without interdependence. Everything that happens in our life can be traced back to a caring relationship. Whether it’s in business, politics, play, school, work, or love, we make our way in the world only because of the caring actions of others. The presence of heartbreak, personal upheaval, chronic illness, infirmity, or disability doesn’t create vulnerability. Our refusal to acknowledge our dependence on the support of others does.

The denial of dependency is a personal, organizational, and societal weakness. We pretend to be who we are not. We develop a false sense of power. We allow our culture to perpetuate the myth of independence, as if it had emerged fully formed without debt or responsibility. And we rob those who are open about their vulnerability, like the two people in Powell River, of one of their greatest gifts: teaching the rest of us how to live and love with our vulnerabilities.

This lesson profiles people who understand that we are in the same leaky rowboat together. They have learned that sharing their weaknesses, mistakes, and difficulties is more nourishing to others than sharing their achievements. This lesson explores the truth about vulnerability: that this is who we are. It’s what makes us human. My wish is that we create a culture that celebrates our reliance on each other, and that doesn’t take those giving and receiving care for granted.

Becoming Human JEAN VANIER

Love is doing ordinary things with tenderness.

Jean Vanier was born into privilege and wealth and the power that comes with it. He spent his early adult life controlling and commanding people. He was a British naval commander and professor of philosophy. In 1964, at the age of thirty-six, he left his worldly life behind and set up house in Trosly-Breuil, a small village in France, with Raphael and Phillipe, two men who had developmental disabilities. They had been living in a nearby institution. Vanier saw their beauty shining through what he described as a place of gloom and desperation. Their small stone house had no plumbing or electricity. It was as humble and ordinary as their ambition to share meals and chores and to help each other out. Their way of living soon became a destination for spiritual seekers and a place of pilgrimage for university students. It eventually inspired 150 similar communities in thirty-eight countries. These communities are called L’Arche (the ark). L’Arche communities are havens where people with and without disabilities commit to live together and to take care of each other. Vanier remained in the original L’Arche community for the rest of his life. He died in May 2019 at the age of ninety.

Vanier’s thirty books and speeches describe his struggles and fears. He spent a lot of his life pretending and hiding from his own weaknesses. “Living with people with disabilities, I’ve touched my own brokenness, my own angers, my own powers of violence, my own capacity to hate,” he told an interviewer.¹ He quoted Martin Luther King Jr., who said that unless we accept what is despicable in ourselves, we will continue to despise others. It’s important to accept our imperfections, he wrote in Seeing Beyond Depression, because “we too have our share in wrongdoing: we have wounded our parents, our children, our husband, our wife, and our friends. When we realize this, we do not have to condemn ourselves but rather to learn to accept our own poverty and inner brokenness.”² Vanier traveled the world reminding people that it is better to be loved than admired. “When you admire people, you put them on pedestals. When you love people, you want to be together,” he said in an interview.³

People compare Vanier to Mother Teresa, the Dalai Lama, and Billy Graham. In 2015, he won the Templeton Prize, which at $1.7 million is worth more than the Nobel Prize. It was established by American investment banker John Templeton to celebrate entrepreneurs of the spirit. The citation described Vanier as an extraordinary man whose message of compassion for society’s weakest members had the potential to change the world for the better. Vanier was never comfortable with the word extraordinary. His spirituality was located in the messy reality of ordinary life. He believed that the world is changed one heart at a time and that it starts with our own heart. In his book Becoming Human, he wrote, “Love doesn’t mean doing extraordinary or heroic things. It means knowing how to do ordinary things with tenderness,” he said.⁴

Vanier described himself as a pretty ordinary guy, more like a rabbit paying attention only to what was in front of him and nibbling away. And what was in front of him were two insights into how to become more human. The first is to admit your own struggles and imperfections. “I am struck,” he wrote in Community and Growth, “by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes.”⁵ The second is to pay attention to those whom others view as weak. “The broken and the oppressed have taught me a great deal and have changed me quite radically,” he wrote in From Brokenness to Community. “They have helped me discover that healing takes place at the bottom of the ladder, not at the top.”⁶

Love’s Labor EVA KITTAY

The ability to love and care is as important as the ability to think and reason.

Eva Kittay wants philosophy to become more humble and down to earth. She wants it to include the insights that come from the caring actions that most people do every day, everywhere—actions that are largely invisible and unappreciated. This is a subject close to her heart. She has been a professor of philosophy at the State University of New York at Stony Brook since 1979. And she has been caring for her daughter Sesha, who has a developmental disability, for more than fifty years. Her daughter deepened her understanding of what it means to be human, the nature of dependency, and the importance of caring relationships to keeping democracy healthy.

It took Kittay nearly thirty years to incorporate her personal experiences into her philosophical writing. It came pouring out in her essay “Not My Way, Sesha. Your Way. Slowly.” Kittay believes that philosophy whitewashes disability and excludes people like her daughter from theories of personhood and human value. She believes the ability to love and care for another is as critical as the ability to think and reason, that the intellect should not rule supreme, and that the daily giving and receiving of care is what makes us human. She wants to end our fear and loathing of dependency because it is central to our existence as social creatures.⁷ In her book Love’s Labor, she argues “that there are moments when we are not ‘inter’ dependent. We are simply dependent and cannot reciprocate.”⁸

In Love’s Labor, Kittay says that a sense of justice and a sense of caring need to be cultivated together: in men, so that they have a sense of caring as deep and extensive as women’s; in feminists, so that they make taking care the “most basic of women’s rights”; and in the public arena, so that those who provide love’s labor don’t become poor and less able to get the kind of care they will need as they become older. In the area of caring, what goes around doesn’t come around, she says.⁹

Purple, Green, and Yellow ROBERT MUNSCH

Supportive networks are a lifeline.

Robert Munsch is the king of children’s literature, with titles like The Paper Bag Princess, Mud Puddle, and Thomas’ Snowsuit. Children giggle along with the predicaments of his characters, particularly the adult ones. They love the snap and crackle of his words when the books are read out loud. Adults love them too, including Oprah. Her favorite children’s book is Love You Forever. It has sold more than thirty million copies worldwide, becoming one of the best selling picture books ever. It is a memorial to Munsch and his wife Ann’s two babies who were stillborn.

Despite his successes, Munsch felt a failure. A “Note to Parents” on his website explains why. “I am a storyteller,” it reads. “I write books for kids, I talk to kids, and I listen to kids. But that is not all that I am. Several years ago I was diagnosed as obsessive-compulsive and manic-depressive. Those challenges have led me to make some big mistakes.”¹⁰ Munsch went public with his addiction to alcohol and cocaine in 2010. It didn’t feel right not to come clean, he said, especially since he made his living teaching kids about honesty. “It made me talk about my own life the same way I talked about things in books, not sugar-coating them.”¹¹

Munsch was born in Pittsburgh and now lives in Guelph, Ontario. He says that his book Purple, Green and Yellow is about depression. In it, a girl named Brigid draws on her entire body with “super-indelible-never-come-off-till-you’re-dead-and-maybe-even-later coloring markers.” When Brigid washes, she becomes invisible, much to her mother’s horror. “Don’t worry,” says Brigid, as she colors herself all over till she looks perfect. “Even better than before.”¹²

Munsch told an interviewer that he too colored himself for the world, beginning when he was in grade school. He kept his struggles with depression a secret, although his mood swings were impossible to hide from his family and closest friends. For twenty years he refused to seek help and used alcohol and drugs to deal with his depression. Thanks to an ultimatum from his wife, he finally got help. He says his life is so much better now, that he is no longer suicidal. He also says that conditions like his can happen to anybody: “It doesn’t matter how good you are, you can have a problem, and being open and having a support group is vital to beating it.”¹³

Moonbeams IAN BROWN

Love is the evolutionary advantage.

Ian Brown is a journalist and author with a reputation for serving up his emotions with unflinching honesty. He is also father to Walker, who was born with a rare genetic condition that affects only a few hundred people in the world. Walker doesn’t communicate by speech and experiences profound seizures. Brown’s candor is controversial. His best-selling book, The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son, has made him a target of criticism. Some parents think that writing about his resentments, doubts, exhaustion, and questions about the meaning of his son’s life should be banished or at the very least kept to himself—that it will give the wrong impression to those who know nothing about disability. They don’t realize that Brown has always sorted out the challenges and changes of his life in public.

In his book, Brown described himself and his son as equals because they were both at a loss as to how to interact with each other. He interviewed scientists, philosophers, and service providers, carrying his love for Walker like a stone in his pocket and striving to understand what his son was trying to show him—a son who Brown said would never take a conventional path to success. This lack of normal expectations freed them to be themselves, he said, and “to remember who we are and what actually matters, as opposed to what is supposed to matter.”¹⁴ He realized that the world his son led him into was “almost by definition anti-establishment; a world where social orthodoxy and conventional wisdom and received opinions have very little value,” and found that “that turns out to be a good vantage point.”¹⁵

Brown discovered that every question about what was inside his son’s head and heart persuaded him to look inside his own. He concluded that Walker represented a “(very small) step towards the evolution of a more varied and resilient ethical sense in a few members of the human species,”¹⁶ and that his son “has few peers as a route to developing what Darwin himself in The Descent of Man called the evolutionary advantages of ‘the social instincts . . . love, and the distinct emotion of sympathy.’”¹⁷

The Four Walls of Her Freedom DONNA THOMSON

Caring means letting go of control and making peace with uncertainty.

Writer Donna Thomson has many specialties. One is letting go: of her life as an actor, director, and teacher in order to care for her son Nicholas and younger daughter Natalie. And then letting go of Nicholas—to adulthood and to leaving home.

Nicholas was born with severe and complex disabilities. He is now in his thirties. One part of his story involves multiple major surgeries, living with chronic pain, spending most of his time in bed, and becoming a candidate for palliative care. The other part involves having a wicked sense of humor; graduating from high school; and maintaining The Sports Ambassador, a blog where the reader is invited to open a cold one and read on. Then there is his obsession with professional wrestling, particularly Stone Cold Steve Austin, and starting a business on eBay.

Thomson’s husband, Jim Wright, now retired, was one of Canada’s top diplomats, with postings in Washington, Moscow, and London. His final posting was as Canada’s high commissioner to the UK, which meant that Jim and Donna hosted the queen, presidents, and prime ministers. Through it all, Donna and Nick were glued at the hip.

She named her first book The Four Walls of My Freedom after a quote by the American philosopher Thomas Merton, who found his freedom only after entering a monastery in Kentucky. Thomson found similar enlightenment in the social isolation she experienced as a caregiver. Mothering a child with medical needs is a very public but lonely endeavor, she said in an interview. “It is a strange paradox that in order to be free, the mother of a child with severe disabilities in our society has to relinquish the choosing self.”¹⁸ Locating the extraordinary in the ordinary made her happy. Tiny everyday actions became a form of meditation, even peeling potatoes. She realized, “Freedom isn’t an exertion of power but an exercise of restraint.”¹⁹

That doesn’t mean it was easy. Being responsible for a loved one who was so fragile felt like a prison at times. “There were days that I felt furious and impotent with my inability to make personal choices or to act spontaneously . . . ever,” she wrote.²⁰ “But I was always seduced again into laughter and optimism by the smell of my children’s hair, the touch of their fingers on my arm, or the whispers of their secrets in my ear.”²¹

When it came time for Nicholas to leave home, she had to let go of her caregiver identity. She said she was getting too old to remain as the “CEO of the Nicholas Wright Corporation” anyway. She no longer had the strength to reposition her son in his wheelchair. She’s learned to trust those who are now caring for Nick. “I learned the hard way that letting go of control and making peace with uncertainty is the key to feeling relaxed and even happy most of the time,” she wrote on her popular blog, The Caregivers’ Living Room.²²

The Untouchables PHILIPPE POZZO DI BORGO AND ABDEL SELLOU

Weakness is a treasure worth discovering.

Driss is handsome, cool, and cocky. The world is his oyster. Except that he is just out of prison and needs money. He shows up for a job interview, not to get the job but to get another letter of rejection that will allow him to keep receiving welfare benefits. Instead he gets the job. No one could be less interested or qualified. His new employer is Philippe. Philippe broke his neck in a paragliding accident. He is wealthy and can hire anyone he wants. Driss is the only candidate who doesn’t treat him with pity. Thus begins The Intouchables, also known as The Untouchables, the most successful French film ever made.

Driss’s caregiving methods are unconventional. He assumes that Philippe will be interested in what he is interested in: women, fast cars, boogeying. There are car chases, gang wars, and tenderness. Both men are lonely in their own way. Both are treated as untouchable—one because of his disability, the other because of his race and socioeconomic status.

The film was inspired by the true story of Philippe Pozzo di Borgo and his French-Algerian caregiver, Abdel Sellou. Pozzo di Borgo’s book is titled A Second Wind: A Memoir. Three years after his accident, his wife, Béatrice, died of cancer. “Weakness is not a handicap,” he said in an interview, “but a treasure that others still have to discover.”²³ Pozzo di Borgo doesn’t distinguish between those who have a disability and those who don’t. “All people are dependent on each other,” he said. “They need to take better care of each other. . . . We’re not always beautiful, athletic, immortal. We are—the older we become—fragile.”²⁴

His real-life attendant Abdel Sellou also wrote a book, You Changed My Life. He said in an interview that he wasn’t particularly endearing when he first met Pozzo di Borgo. “I used to just be concerned with myself,” he said. “I was a lone wolf, egotistical and unscrupulous.”²⁵ He wrote in his book that he hadn’t done that much for Pozzo di Borgo, “at least not as much as he did for me.”²⁶ Pozzo di Borgo views it differently. “He was unbearable, vain, proud, brutal, inconsistent, human. Without him, I would have rotted to death. . . . He was my guardian devil.”²⁷

Poem for Michael KIRSTEEN MAIN

Friendship is silent communion.

Kirsteen Main is a Canadian poet who composes using an alphabet board, a device that enables her to gesture in the direction of the letter she has chosen. “Not being able to speak is not the same as not having anything to say,” Main wrote in the opening to Dear Butterfly, her first collection of poetry and painting.²⁸ The following poem was written to honor her lifelong friendship with Michael Wittman.

To Michael

You are the friend

Everyone deserves.

You are a friend I respect and admire.

With you I can be exactly

Who I am.

There is no need to

Feel invisible.

You understand in a way

No one else can.

Silent communication comforts me,

Gives strength to our lives, adds hope for our future.²⁹

There Is No Independence without Interdependence BONNIE SHERR KLEIN

Asking for help gives people an opportunity to be their most human.

Bonnie Sherr Klein is an award-winning documentary filmmaker. She was one of the first directors in Studio D, the feminist unit at the National Film Board (NFB) of Canada. One of the NFB’s most commonly screened films is Not a Love Story, the first documentary about pornography from a woman’s point of view. Filmmaking and feminism defined her identity into her forties, until a summer weekend at the family’s Vermont cabin. That’s where the first of her two major strokes happened. She would have died from the second one had it not been for the tenacity of her doctor husband, Michael Klein. After an exhaustive search, he found a surgeon willing to perform a delicate eight-hour operation that saved her life. Her book, Slow Dance: A Story of Stroke, Love, and Disability, recounts the story of her recovery from paralysis, being unable to speak and reliant on a respirator. After many years of rehabilitation and meeting other people with disabilities, she settled into her new identity as a woman with a disability.

Nowadays Klein gets around in a motorized scooter that she calls Gladys, named after a suffragette who learned how to ride a bicycle later in life. She wrote, “Before my stroke, I had a mistaken notion that feminism meant ‘independence’; the unspoken corollary was that dependence on others is shameful. What I’ve learned finally is that in asking for help I offer other people an opportunity for intimacy and collaboration. Whether I’m asking for me personally or for disabled people generally, I give them the opportunity to be their most human. In Judaism, we call this gift a mitzvah.”³⁰

One of the many people who were changed by the experience of caring was Klein’s daughter Naomi. Naomi Klein is the author of No Logo and This Changes Everything. She was seventeen at the time of her mother’s strokes and about to enter university. Instead, she took time off to help the family care for her mother. It was a formative moment. She saw how trauma could bring out the best in people. It influenced her writing of The Shock Doctrine. “In a shocked state, with our understanding of the world badly shaken, a great many of us can become childlike and passive,” she told an interviewer, “and overly trusting of people who are only too happy to abuse that trust.”³¹ Or, as she learned from her family’s experience, “we can evolve and grow up in a crisis, and set aside all kinds of bullshit—fast.”³² The New Yorker once described Naomi Klein as the most influential figure on the American left. She wrote in an essay for the Nation that “‘I care about you’ . . . is a deeply radical statement.”³³

At the end of Slow Dance, Bonnie Klein wrote that she knew she could live well without the role or title of filmmaker. She wondered whether she would ever make another film. Eight years later she did. She directed Shameless: The ART of Disability, which profiles five artists who have a disability. She is one of them. The film confronts with gentle humor the images that the public has about disability, including the ones that Klein used to have, which is one of the reasons why she made the film. She admits in the film that at first she didn’t want to be identified as someone who had a disability, that she couldn’t stand to walk by a mirror and see herself. “Art reveals the best and worst parts of ourselves to each other,” she says. “It is shameless. The people I know now because of my stroke have enriched my life and are my teachers and mentors. They’re fellow travelers and they’re artists.”³⁴