LESSON 5

All Means All

Every single one of us—woman, man, gay, straight, disabled, perfect, normal, whatever—is powerful when we are not trying to fit in, when we are not leaving half of ourselves outside the room.

—CAROLINE CASEY

Our challenge for the future is how to make relationships and build organizations based on the realization that there is no one whose contribution we do not need.

—JACK PEARPOINT

I also see the value in creating a world that caters to the needs of the whole spectrum of humanity.

—RICHARD BRANSON

What Ted and Josh Kuntz Taught Me

DIVERSITY STRENGTHENS OUR social immune system. It is key to creating more resilient and caring communities. This is why Jeff, one of two teachers who were dividing seventy students into two grade-seven classes with the toss of a coin, picked Josh Kuntz.¹ “I don’t understand,” said Mike, the other teacher. “Why would you choose a child with severe disabilities as your first pick?”

“Well,” said Jeff, “I think having Josh in my class will make it a kinder and gentler place for everyone. I’ve been around the school for a number of years, and I noticed how the other children responded to Josh. I noticed they were eager to greet him when they passed him in the hallways. I noticed children modifying games to include him and comforting him after a seizure.”

Josh was Ted Kuntz’s son. The story of the two teachers dividing seventy students into two grade-seven classes with the toss of a coin is the centerpiece of Ted’s book Peace Begins With Me: An Inspirational Journey to End Suffering and Restore Joy. It’s a story I never got tired of hearing as Ted rehearsed in front of a few of us before hitting the road to speak about the importance of diversity. Josh was born healthy but acquired a disability early in life due to the aftereffects of a vaccine. He was left with an uncontrolled seizure disorder. It affected his intellectual development and his language. Josh could speak some words with difficulty, but few people could understand them. That didn’t matter to Ted and his wife, Cathy Anthony: they requested, indeed insisted, that Josh attend the same neighborhood school as his sister.

And it didn’t matter to Jeff, the teacher who chose Josh because he understood the multiple benefits of inclusion. He knew Josh would benefit from being in a regular classroom. He also knew Josh would enrich the learning environment for his classmates, make the school a better school, and make him a better teacher. Jeff once told Ted that he believed Josh’s ultimate contribution was teaching his classmates how to become caring citizens. Ted’s corporate clients wanted those kinds of benefits too. They wanted to do something more than follow diversity guidelines. They wanted to create a welcoming environment for all their employees, and they believed there was no better way to get started than by inviting Ted to tell Josh’s story.

The expressions “Don’t put all your eggs in one basket” and “Variety is the spice of life” are reminders that diversity has been a source of strength and renewal through the ages. Nowadays the rhetoric about diversity is everywhere. Diverse viewpoints give us a competitive edge. They stimulate new ways of thinking. They help break logjams. They can lead to breakthroughs. These are true. But only if everyone is included, not just a select few, and if they are welcomed wholeheartedly the way Jeff welcomed Josh. There is still hard work to be done if we are to fully benefit from diversity. Too many people continue to be excluded economically and socially.

The people I’ve chosen for this lesson know how to make diversity stick so that it benefits both the individuals being included and the wider society. They teach us that you can’t be a little bit pregnant or a little bit diverse. One is a pioneer in the corporate field of diversity. Another is refreshing a seven-hundred-year-old tradition of inclusion that is becoming a model of health care and social care reform. Some are demonstrating the benefits of catering to people with disabilities as customers and employees. Others are transforming the fields of fashion, dance, and entertainment.

My wish is that you get to experience the power of the Joshes of this world and commit to using your power and know-how not only to include but also to welcome. Or that you get to be one of the Joshes of this world, recognized for your attitude, skills, and talents and no longer unwisely overlooked.

The Elephant in the Room CAROLINE CASEY

If disability is not on your agenda, neither is diversity.

Caroline Casey is an Irish social entrepreneur and adventurer. She claims her parents used Johnny Cash’s song “A Boy Named Sue” as the inspiration for not telling her that she was legally blind. They wanted to toughen her up. She didn’t find that out that she had ocular albinism until she applied for a driver’s license. Casey describes her vision as similar to looking through glasses smeared thick with vaseline.

She hid her disability from her employers when she started to work and from most of her friends. She didn’t want to appear weak or to ask for help. One day an eye specialist asked her, “Why are you fighting so hard not to be yourself?” she recalled in a TED Talk.² It was a defining moment. She eventually left her job and decided to pursue a childhood dream to become Mowgli from The Jungle Book. She became the first female mahout (elephant rider) from the West to trek across India on an elephant. Her journey was filmed by National Geographic in the documentary Elephant Vision. “It’s extraordinary how far belief can take you,” she said.³

Since her return from India, Casey has used that belief to address society’s elephant in the room, the inclusion of people with disabilities in business. In industrialized countries, only 20 percent of people with a disability are employed. In developing countries, it is significantly less.⁴ Casey believes that business is the only force on the planet capable of remedying this inequality crisis. “We know that if business values disabled people equally, then society will too,” she said in response to the results of a survey of attitudes of business leaders to disability inclusion.⁵ She wrote in June 2019 that “despite 90% of companies claiming to prioritize diversity, only 4% actually consider disability.”⁶

In 2019, she made history at the World Economic Forum’s annual summit in Davos. She launched “The Valuable 500,” a call to action for five hundred global business leaders to put disability issues on their board agenda. “It’s no longer good enough for companies to say ‘Disability doesn’t fit with our brand’ or ‘It’s a good idea to explore next year.’ Businesses cannot be truly inclusive if disability is continuingly ignored on leadership agendas,” she said.⁷ Some of the biggest brands in the world have signed on, including Unilever, Microsoft, Barclays, Fujitsu, Sainsbury’s, Bloomberg, Boeing, Cinépolis, and Accenture. Paul Polman of Unilever and Richard Branson of Virgin were the founding Valuable 500 leaders. “After more than five decades as an entrepreneur and investor, I know firsthand how valuable different perspectives are in every aspect of business,” said Branson. “Any business not engaging with [people with disabilities] is doing its customers a disservice.”⁸

Casey wants to change the world for everyone. That’s why the Valuable 500 uses the term “diversish” to caution against being selectively diverse and only including some people with diverse backgrounds and experiences depending on what suits the company best. Their cheeky two-minute film Divers-ish won a bronze award at Cannes Lions for effective marketing communication.⁹ Casey wants a world where everyone belongs. “Inclusive businesses will create inclusive societies,” she says. “Diversity is not about prioritizing one group over another. It’s about all groups.”¹⁰

Krip-Hop Nation LUCA PATUELLI

The hip-hop community dances to inclusion.

There are many reasons why hip-hop has replaced rock and roll as the most popular form of music. For one, it combines rapping, sampling, deejaying, guerrilla art, fashion, and break dancing. For another, its roots are in social critique and protest. Hip-hop is more than entertainment—it is a way of thinking, a way of turning the status quo on its head and reconfiguring it. Hip-hop may also be the world’s most inclusive art form. And Luca Patuelli, aka Lazylegz, is one of its stars. He is lead dancer with the Théâtre National de Chaillot in Paris and has his own dance crew, which tours the world. Growing up, he felt insecure and blamed his disability for his not being able to do things. Discovering dance gave him the opportunity “to use my difference as a strength and not look at it as a weakness,” he said in an interview.¹¹

Patuelli was born in Montreal and raised in Bethesda, Maryland. He has a muscle condition that affects the bones and joints of his body, which required sixteen surgeries before he was seventeen. He uses crutches when he walks. He dances with and without them. “The beauty with breaking and hip-hop is being unique,” he explained in an interview. “There are a lot of movements I’m physically not capable to do because of the way my legs were born and because of my shoulders, but I am able to create my own unique style using the strength of my arms.”¹²

His crew of eight dancers with disabilities is called ILL-Abilities. Hip-hop regularly flips a negative term and turns it into something positive. Thus “bad” is “good” and “ILL” means “very cool.” ILL-Abilities includes Tommy “Guns” Ly, who had his right leg amputated as a teenager. Ly is attracted to hip-hop because while there are guidelines, there are no rules. “I’ve had to be clever and creative, expanding the possibilities of what I can do with just one leg,” he said in an interview.¹³ Another crew member is Jacob “Kujo” Lyons, who hears music as a static drone. He compensates by memorizing and following the visual clues of other dancers. “There’s an unexpected freedom in not being able to hear,” said Lyons. “I can dance independently of the music, meaning my movements are off-beat, figuratively and literally.”¹⁴ ILL-Abilities also includes South Korea’s Jung Soo “Krops” Lee, who broke his neck in a dance injury in 2013. He was told that he would never walk again, but he says they neglected to say anything about dancing. “After my injury, I wanted to break down the wall between normal people and handicapped people,” Lee said, “and have everyone have the same possibilities to do everything.”¹⁵

ILL-Abilities “has become a brotherhood,” Patuelli said in an interview. “It’s beyond dance.”¹⁶ He said one of his roles is to bridge the gap between dance and hip-hop to make the world a more inclusive and accessible society for all. “Dance is the connection between you and the universe; while we are dancing we are developing ourselves based on the energy, the emotions, and the challenges we experience,” he said in the Canadian Dance Assembly’s 2015 International Dance Day message.¹⁷

Note: To learn more about the intersection of hip-hop and disabilities around the world, check out the website Krip-Hop Nation.¹⁸

Runway to the World AARON PHILIP

Diversity is more than a fashion.

Aaron Philip tweeted her modeling career into existence when she was seventeen. Her tweet read, “honestly when i get scouted/discovered by a modeling agency it’s OVER for y’all! by y’all i mean the WORLD!”¹⁹ Less than a year later, she became the first disabled, gender-nonconforming, trans woman of color to sign with Elite Model Management. That’s the company founded by John Casablancas. Shortly after, she landed her first magazine cover with the Isis Nicole Magazine. Aaron (pronounced “ay-ron”) has cerebral palsy. She uses she/her pronouns and a wheelchair to get around.

Philip has always been determined. “Sometimes, it’s you who has to trigger your own happiness,” she told her online followers.²⁰ She wrote a memoir at age fourteen titled, This Kid Can Fly: It’s About Ability NOT Disability. It tells the story of immigrating to the Bronx from the island of Antigua with her family, who wanted better medical options for her, and living for two years in a homeless shelter because of large medical bills. The lack of diversity on the runway deeply affected her as she was growing up. It drove her to take matters into her own hands, “to carve a space and try to provide opportunity for members of my community in this field. And while this might sound inspiring to some, to me it’s simply a matter of showing the world something different, and opening people’s minds—especially in fashion, where there’s a fine line between art and consumerism.”²¹

Fashion is important to her because “it’s the ultimate form of conveying self-expression and toying with gender.”²² Her ambition to become a model was accelerated by a magazine cover that pictured model Kylie Jenner posing in a golden wheelchair. Jenner does not have a disability. The portrayal made Aaron determined to shift the image of disabled people from fetish to muse. She wants the world to know that muses can be black, physically disabled, and trans. “It is no longer enough just to be a pretty face,” said Susannah Hooker of Elite Model Management. “Models also have a social responsibility, as they are increasingly becoming influencers, particularly to the younger generation.”²³ Philip said in an interview that she thinks the industry has “an obligation to create spaces that are accessible, clean, open, and well thought out for people that aren’t able-bodied.”²⁴ She doesn’t want it to end with her. Her signature style, confidence, and hustle suggest that it won’t.

Unleash Different RICH DONOVAN

Catering to the disability market means delighting customers with disabilities.

When Rich Donovan started on Wall Street, he wondered whether he could keep up with the speed of its markets. Now Wall Street should be wondering how to keep up with the speed of the market he is a specialist in, the disability market. Donovan knows that it is more powerful than business realizes. The combination of people with disabilities plus their families and friends means that the disability market touches 63 percent of consumers. “This is not a niche market,” he said during a speech in 2019.²⁵ It’s a market that amounts to $8 trillion in annual disposable income, $645 billion in the United States alone. Aging baby boomers will add to those numbers as they acquire disabilities, he adds. His book Unleash Different: Achieving Business Success Through Disability outlines the details of the world’s largest emerging market and how organizations can grow revenue and cut costs by attracting people with disabilities as customers and talent.

Donovan was a portfolio trader at Merrill Lynch for eight years. As far as he knows, he was the only one with a visible disability. He has cerebral palsy and wondered whether people would have trouble understanding him, so he began using instant messaging and email until they got used to his voice. Donovan eventually earned his firm $35 million in profit before he left in 2008 to form the Return on Disability Group. Their slogan is “Translate different into value.” Catering to people with disabilities as customers and employees is a business opportunity, he says, not a charitable problem. “Quotas and equity laws do not cause hiring,” he wrote in an opinion piece. “It’s the promise of future profits that does.”²⁶ The key, he said in the 2019 speech, is not to design for disability but “to design from disability.”²⁷ Accessibility might get people in the door, but they have to have a reason to want to. “That means figuring out what you have to do to delight them,” he said.²⁸

Donovan created the Equity Tracking Indices to recognize public companies that are outperforming in the disability market. They are published daily by the New York Stock Exchange. Their latest annual report notes that “firms with the highest results in disability-driven value creation outperform their competitors in terms of long-term stock price.”

Navigating Privilege and Power DEBORAH DAGIT

Diversity means using your power and privilege to explain how things work to those who have been excluded.

Deborah Dagit lived for months at a time in a hospital when she was a child, often in a full-body, plaster of Paris cast or with her legs in traction, unable to move. She was born with a genetic condition that caused her bones to break easily and take a long time to mend. It often results in shorter-than-average stature. Dagit is four feet tall. She’s had more than sixty fractures, most of them when she was a child. Her single mom lived an hour’s drive away. Since visiting hours in the 1960s were much shorter than they are nowadays, they usually saw each other for an hour on Sunday afternoons. On top of that, she wasn’t allowed to make phone calls. “I wasn’t sick or ill,” she said. “Just incredibly bored.”²⁹

To keep herself busy, she became a keen observer of how hospitals worked from a kid’s point of view. She used those insights to make the hospitals less terrifying for others. She requested that the other children’s beds be placed near hers. She gave her fellow patients tips on where to get the best food, which nurses were the kindest, and which TV shows were the best. “As my new friend shifted from being terrified to giggling, I became increasingly popular with the medical staff,” she said. “It became abundantly clear the universe had put me here to help others.”³⁰ At nine years of age, she had discovered her life’s purpose.

She has been helping people navigate institutions and big companies ever since. She describes her journey as similar to scaling Mount Everest. Even though she had a college degree, she was taken aside by several HR leaders at her first entry-level job and told that “someone like her was lucky to have a job and should not waste others’ time applying for bigger roles.”³¹ Once she was flown to New York, put up in a nice hotel, and picked up in a limousine for an interview with a Fortune 50 company. When the recruiter saw what she looked like, he told her that she wasn’t what they had expected and promptly canceled the interviews. On another occasion, a human resources executive told her that having her work at his company would be like a heart transplanted into a body that rejected it.

Dagit persevered. She became a pioneer in the diversity field, leading initiatives in three Fortune 200 firms. She became the first diversity leader who identified as a person with a disability. Dagit said in a keynote speech that her privilege and her power are defined by her vulnerability, not by her title, rank, or wealth. It gives her an insider’s perspective on how workplace cultures work for people who have been excluded. “Regardless of our age and station in life, all of us can be leaders if we acknowledge and share the knowledge we uniquely have to help other’s paths become easier,” she said.³²

Sharing Lives THE VILLAGE OF GEEL AND ALEX FOX

A seven-hundred-year-old approach to inclusion is transforming health and social care systems.

Since the fourteenth century during the Renaissance, the Belgian village of Geel has been a sanctuary for people labeled mad, crazy, insane, or mentally ill. It was so well known that Vincent van Gogh’s father considered sending his famous son there. Seven hundred years later, Geel families are still being hospitable and setting the norm for non-medical, community care. The host family is not told anything about their new boarder’s diagnosis or background. It’s left to the individual to decide how much to tell them and when. Families are simply expected to share their lives and to make their boarder feel part of their family. Many boarders spend the rest of their life with successive generations of one family—for example, first as a daughter, then a sister, and finally an aunt. “They are part of the family—we love them,” said Toni Smit in an interview. She is from one of Geel’s host families.³³ Philippe Pinel, the founding father of French psychiatry, observed that “the farmers of Geel are arguably the most competent doctors; they are an example of what may turn out to be the only reasonable treatment of insanity and what doctors from the outset should regard as ideal.” Oliver Sacks, the poet laureate of contemporary medicine, was equally enthusiastic. “Unimaginable elsewhere! I would like to see more places like Geel,” he said in an interview.³⁴

Geel’s deeply personal approach to care is enjoying a renaissance in the UK, thanks to the organization Shared Lives Plus. They support ten thousand host families who welcome more than fourteen thousand people into their homes. Everyone benefits. Their CEO, Alex Fox, observes in his book A New Health and Care System: Escaping the Invisible Asylum that the families will move heaven and earth for people they regard as friends and family, not as clients. Shared Lives is making waves as a practical alternative to costly and impersonal health and social care. Compared with professional care, the quality is consistently high and the turnover is low, as is the cost. Fox writes, “The act of sharing your home and family life is radical, even shocking in a world where we can feel we have less and less contact with each other, but it’s also deeply personal.”³⁵ It gives modern meaning to the phrase, “It takes a village.”

An Authentic Doctor DAVID RENAUD

People are looking for real stories about real people from diverse backgrounds.

A motorcycle accident at the age of nineteen left David Renaud paralyzed. He became a doctor to find a cure for spinal cord injuries, only to realize that he loved being a storyteller more. So he left family medicine and earned a screenwriting degree from UCLA. Today he is executive story editor for the hit TV series The Good Doctor. The fact that he uses a wheelchair makes him a better doctor and a better writer, he said in an interview. “When you have a disability, you always need to work harder to prove that you can do the job as well as everyone else, which means you have to be better than the average person.”³⁶

The Good Doctor focuses on the demands of medical training, including burnout and bullying. Its main character, Shaun Murphy, played by Freddie Highmore, is a young surgeon with autism. Renaud’s aim is to normalize the idea of a doctor with a disability, something he is an authority on. “Show society the world you want often enough and people will start to see the world that way,” he said. “Then, the barriers will come down.”³⁷

Renaud thinks that one of the reasons The Good Doctor has been a hit with viewers is because they are telling real stories about real people. “Autistic, blind, deaf, wheelchair users—we’re all part of this big community of people who are struggling to have our stories told. And not just told, but told in an authentic way,” he said in another interview.³⁸

All Means All MARSHA FOREST AND JACK PEARPOINT

Everyone belongs.

You can’t be a little bit pregnant. And you can’t be a little bit included. Either you are in or you’re not. Those are the beliefs that led educators Jack Pearpoint and his late wife, Marsha Forest, to breathe new life into the term inclusion in the late 1980s. It was a heady time in the disability world. Segregated schools and separate classrooms were closing. Students with disabilities were being mainstreamed and integrated. There was a three-letter hitch, however—the word but. “It was being used to exclude far too many students,” said Pearpoint. “All means all,” he added.³⁹

The messaging from school boards was similar: Of course all children are welcome in our schools and classrooms . . . But, we don’t have enough money. But, we aren’t trained. But, there is no curriculum. But, not those children with those kinds of disabilities. The “buts” kept coming despite the availability of money, training, support, curriculum, and evidence that all children benefit when children with disabilities are included in regular classrooms.

In frustration, Pearpoint and Forest invited a group of colleagues and disability advocates from across North America to their Toronto offices. The topic was what to do about the “buts.” By the end of the meeting, they agreed that the word inclusion best conveyed the principle that everyone belongs, no buts about it. The idea embedded in the word took off. It continues to be nurtured by Inclusion Press, a publishing house they established, and an annual Summer Institute in Toronto, which Pearpoint hosts with Lynda Kahn, his wife and partner. Inclusion isn’t a program or something one “does to or for someone else,” Pearpoint has said. “It’s a way of thinking, a deeply rooted spiritual concept that one lives.”⁴⁰

Did You Know . . . the Montessori Method

Italian doctor and educator Maria Montessori developed her innovative teaching methods working with children who had developmental disabilities. These methods changed the way we educate all children. She believed that intelligence wasn’t fixed and that it could be enhanced by a stimulating environment and by nurturing a child’s natural desire to learn. Montessori was the first educator in the world to use child-sized tables and chairs in her classrooms. She pioneered open classrooms, early childhood education, educational toys, and the idea that children learn through play. “It is not true that I invented what is called the Montessori Method,” she said. “I have studied the child; I have taken what the child has given me and expressed it, and that is what is called the Montessori Method.”