Al Etmanski

Disability Digest #20 featuring Sarah Biffen, Ali Stroker, Brian Wilson, Selma Blair and Helen Keller

aletmanski — Wed, 16 Jun 2021 02:38:00 +0000

Dear Reader

“History will be kind to us,” wrote Winston Churchill, “because I will write it.” That point is more than debatable these days. What isn’t debatable is the fact that history hasn’t been kind to people with disabilities. Even though as you will read in this issue they have produced heavenly music and exquisite works of art, entertained us and fought for justice.

This issue leads off with a portrait of the world’s first computer programmer, Ada Lovelace. The painter is Sarah Biffen. You can read more about her below. It also features Tony Award winning actor Ali Stroker, Beach Boy Brian Wilson, actress Selma Blair and social justice crusader Helen Keller. I suspect many of you will be surprised at the extent of Keller’s political activism.

Please help rewrite history by sending your comments and suggestions for future issues via this form. If you would like to brand and distribute these bulletins through your own network please get in touch.

Enjoy – Al

PS: Recently the World Economic Forum chose The Power of Disability as one of the best books for business leaders who want to build an inclusive workplace culture.

June 16th is the birthday of actor and Broadway star Ali Stroker (1987). She was in a car accident when she was two years old and has used a wheelchair ever since. She is the first wheelchair user to win a Tony Award. She won best featured actress for her role as the flirtatious ‘Ado Annie’ in the Broadway musical Oklahoma. “Who says that dance isn’t turning on wheels? Who says dancing isn’t throwing your arms up in the air and grabbing someone else’s arms to be propelled across the stage?,” she said.

Stroker is paralyzed from the waist down and can’t use her diaphragm the way most mezzo-sopranos can. She created her own singing techniques to accommodate her paralysis. “Singing is more than just making a sound – it’s a physical activity. The breadth of support that you get from being able to control your diaphragm and lungs is incredible. So I have to do a little bit more work than others to get the amount of air I need to take in.”

In addition to her work on and off-Broadway, Stroker has soloed at the Kennedy Center in Washington, New York’s Town Hall, the Lincoln Center for Performing Arts and Carnegie Hall. She is currently writing a book and recording an album of children’s songs and stories. Last Christmas she played the lead in the holiday film Christmas Ever After. “When things get really difficult, I remember that it is not just about me,” the former Glee Project star continues. “It’s about all of those people with disabilities, my community, seeing themselves represented in mainstream media, on screen and onstage.”

She adds: “Every time I do something for the first time, people are unsure whether it’s possible. In those situations, you must stay true to yourself and work really hard to get to where you want to be.”

June 20th is the birthday of legendary Beach Boy singer songwriter Brian Wilson (1942). His harmonies continue to fill the world with good vibrations. Paul McCartney claims that Wilson’s song “God Only Knows” is the greatest song ever written. Wilson’s album Pet Sounds is ranked number 2 of the greatest albums of all time by Rolling Stone magazine.

Wilson’s struggles with mental illness are equally legendary although not well understood. They led to parodies like the Barenaked Ladies lyric, “lying in bed just like Brian Wilson did.” He began hearing voices and experiencing hallucinations when he was twenty-two. He describes the voices as derogatory, stalking him and telling him negative things about himself. The voices are accompanied by depression and periodic feelings of intense fear. “So many people on the planet deal with some type of mental illness. I’ve learned that over the years, and it makes me feel less lonely. It’s part of my life,” he said. It wasn’t until he was forty that Wilson started receiving treatment. The voices haven’t gone away he wrote in his autobiography, I Am Brian Wilson . “It’s part of my brain that doesn’t change so what has to change is the way I deal with it.”

“To calm myself, I try to meditate my way into the music. Music is the solution. Music takes what’s inside me and puts it into the world around me. It’s my way of showing people things I can’t show any other way. Music is in my soul.”

“I want to believe my music helps people on a spiritual level, helps them with their troubles, eases their minds, makes them feel love. But in the end, how can I know?”

“My family and friends constantly assure me I’m going to be okay, that they’re on my side and they’re my allies. They tell me they are my guardian angels and they will help me through it.”

June 23rd is the birthday of actress Selma Blair (1972). She is known as a fashion trendsetter and has worked with designers like Stella McCartney. At the 2019 Oscars, she caused a sensation by appearing on the red carpet in a beautiful gown holding a patent leather cane that she had personalized with her own monogram. A few months earlier she had revealed her diagnosis of multiple sclerosis on Instagram. “I have #multiplesclerosis,” she wrote. “I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken GPS. But we are doing it. And I laugh and I don’t know exactly what I will do precisely but I will do my best.”

Blair doesn’t interpret her MS as a tragedy. She is relieved at having a diagnosis after five years of not knowing what was happening to her body. At first, she thought she had a pinched nerve. “There’s a humility and a joy I have now, albeit a fatigued joy,” she said. Blair describes herself as “pretty much a nobody in Hollywood.” But she is motivated to use her celebrity status to help people become more comfortable in their own skin. “It’s more than I’ve ever done before,” she adds.

Blair would like to see more stylish clothes available to people with disabilities. Clothing can be comfortable and chic at the same time she says. They should “fit right and look cool.” A cane is a great fashion accessory she adds.

The documentary Introducing Selma Blair premiered in the spring of 2021. It won the Special Jury Award for Exceptional Intimacy in Storytelling in the Documentary Feature Competition.

June 27th, 1880 is the birthday of Helen Keller feminist, pacifist and union activist. She campaigned for women’s and workers’ rights and an end to racial segregation. She also co-founded the American Civil Liberties Union. Keller became known as the socialist Joan of Arc. “I feel like Joan of Arc at times, she wrote. “My whole being becomes uplifted. I, too, hear the voices that say ‘come,’ and I will follow no matter what the cost, no matter what the trials I am placed under. Jail, poverty, calumny—they matter not.” Her radical politics were criticized and even drew the attention of the FBI who thought she might be a Communist.

“So long as I confine my activities to social service and the blind, they compliment me extravagantly, calling me ‘arch priestess of the sightless,’ ‘wonder woman,’ and a ‘modern miracle,” she wrote.

“But when it comes to a discussion of poverty, which I maintain is the result of wrong economics, that is a different matter! It is laudable to give aid to the handicapped. Superficial charities make smooth the way of the prosperous; but to advocate that all human beings should have leisure and comfort, the decencies and refinements of life, is a Utopian dream, and one who seriously contemplates its realization indeed must be deaf, dumb, and blind.”

Toward the end of her life Keller was asked whether there was anything worse than losing her sight. Keller replied, “I could have lost my vision.”

Self portrait of Sarah Biffen wearing a black dress with a collar of white ruffles.

Did you know?

Miniature portraits painted on ivory in Victorian England were as popular as selfies are today. Sarah Biffen was one of the most popular and financially successful artists of that era. She became so famous that Charles Dickens mentioned her in his novels, and Queen Victoria was a client. The inscription on the back of her portraits read, “by Sarah Biffen without limbs.” Biffen used her mouth to steady her brush because she was born without arms and legs.

Biffen became a member of the Royal Academy of Artists and was awarded a civil pension by Queen Victoria. Her paintings still fetch a high price and have inspired an international art movement of artists who paint with their mouths or feet. For more information contact The Association of Mouth and Foot Painting Artists of the World. They represent artists from more than seventy-five countries.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Receive your weekly copy of the Disability Digest.

The post Disability Digest #20 featuring Sarah Biffen, Ali Stroker, Brian Wilson, Selma Blair and Helen Keller first appeared on Al Etmanski.

Disability Digest #19 featuring Wendy and Phil Allen, Curtis Mayfield, Susan Sygall and Christy Brown

aletmanski — Wed, 02 Jun 2021 04:12:46 +0000

Dear Reader

The painting that graces this issue is by Irish painter and writer Christy Brown. Also featured are educators and incurable romantics Wendy and Phil Allen, legendary soul singer, Curtis Mayfield, and wheelchair rider Susan Sygall.

I hope you agree that people with disabilities influence every aspect of life. And that any barrier that prevents them from performing at their peak is society’s loss.

I’m trying something new in this issue, embedding videos. Let me know if the links work and whether you like this feature.

You can help rewrite history by sending your comments and suggestions for future issues via this form. And if you like what you’re reading please spread the word.

Enjoy – Al

PS: Check out my six part podcast series The Power of Disability. The last two episodes are with:

Penny Parry and Tim Louis who share stories and reflections from 40 plus years of working on social issues in their own careers and together as a couple.

And Barb Goode the queen of self advocacy and plain language. She is a global change-maker and unsung hero of the disability movement.

June 2nd is the thirty-seventh anniversary of Phil and Wendy Allen’s marriage (1984). Theirs is a love story for the ages. Think Anthony and Cleopatra or Romeo and Juliet, but without the tragedy. Just as intense and passionate, but more joyful and long-lasting.

Wendy and Phil had movie star good looks. They married in an era when many people with disabilities were prevented from having a relationship let alone marry. “Not letting people get married if they want to be together is very cruel,” said Phil. “Whether you’re handicapped or not doesn’t mean you can’t love somebody or you can’t clean up the house.”

“We met at a friend’s party and it was, what do you call it, love at first sight,” recalled Wendy. “I thought he was so nice. A cool guy.”

“Wendy looked just beautiful on our wedding day,” said Phil. “I looked pretty good too. Yep, that was a nice day. It was a little cloudy in the morning and cleared up in the afternoon.”

Wendy and Phil had a lot in common. They collected records, lapel pins, and spoons. They had a Christmas display in their apartment that would rival a major department store. Wendy hosted a radio show for years. Phil was always in demand as a public speaker and taught college and university classes.

Phil was twenty-eight years older than Wendy. He spent the early years of his life in an institution where “the only thing they taught you was how to feel forgotten.” He was afraid of being put into a nursing home. “That’ll never happen as long as I’m around to take care of you,” Wendy promised. “That’s part of the deal when you are married, you know.”

Phil Allen died on September 11, 2017. Wendy kept her promise.

For a deeper profile of Phil and Wendy’s love story read, Couples with Intellectual Disabilities Talk about Living and Loving by Karin Melberg Schweir.

June 3rd is the birthday of soul singer and songwriter Curtis Mayfield (1942). Mayfield provided the soundtrack for the civil rights movement. His songs include, People Get Ready, from his days with his first group The Impressions, and Keep on Pushing which was Martin Luther King Jr’s favourite.

Mayfield grew up in one of Chicago’s low-income housing projects. “With everything I saw on the streets as a young black kid, it wasn’t hard during the later fifties and sixties for me to write my heartfelt way of how I visualized things, how I thought things ought to be,” he said.

In 1990 a freak accident occurred during an outdoor concert in Brooklyn. A major wind storm toppled stage lighting equipment which fell on Mayfield. He was paralyzed from the neck down. After a lengthy recovery, he released his final album, New World Order. Mayfield recorded the album lying on his back recording one line at a time because that’s all the air he could get into his lungs. “How many 54-year-old quadriplegics are putting albums out? You just have to deal with what you got, try to sustain yourself as best you can, and look to the things that you can do,” he said.

Mayfield was inducted into the Rock and Roll Hall of Fame, won a Grammy Legend Award, a Grammy Lifetime Achievement Award and was inducted into the Grammy Hall of Fame twice.

He died from complications of type 2 diabetes at the age of 57 on December 26, 1999. “We’re all human beings, so we can get angry and bitter or mad, but for me, it doesn’t last long,” he said. “I’d rather be humble and cry tears of joy than to take on the stress and burdens of being dogged out and negative.”

The song, Back to Living Again was recorded after his accident.

June 4th is the birthday of artist, author and global disability rights activist. Susan Sygall (1953). A car accident when she was 18 turned Sygall into a self described “happy wheelchair rider.” She was never angry about being disabled. “I was angry about discrimination,” she said. In 1981 she co-founded Mobility International to promote full citizenship for disabled people wherever they live in the world.

Their signature program is the Women’s Institute on Leadership and Disability (WILD) which brings women with disabilities from around the world for a three-week retreat in Oregon.

The joyful music video Loud Proud and Passionate captures disabled women activists from 45 countries celebrating their global sisterhood.

Sygall has received numerous awards for her work including a MacArthur Fellowship which is sometimes called the genius grant. She is also a member of the prestigious Ashoka global fellowship of social entrepreneurs.

Sygall’s memoir No Ordinary Days describes how she used her wheelchair to transport her on a rolling adventure exploring the inner and outer dimensions of her life. Her years of activism have taught her “You need to be surrounded by people who believe in your dreams, who will work with you for however long it takes and those who know how to celebrate victories.” Nowadays her activism has shifted from “inclusion to infiltration” into society’s institutions. “Behaviour change is motivated by law,” she explains.

June 5th is the birthday of Irish poet, writer and painter Christy Brown (1932). Brown was born with a gift for story telling. He had cerebral palsy and used his left foot for typing and painting. He published his best selling autobiography, My Left Foot in 1954. Brown credited his mother for refusing to send him to an institution and for teaching him to read and write. “From the gutter of my defeated dreams you pulled me to heights almost your own,” he wrote of his mother.

This excerpt from My Left Foot describes the event that changed his life and gave his mind “its chance of expressing itself.”

My hands were so tightly clenched that my fingernails bit into the flesh. I set my teeth so hard that I nearly pierced my lower lip. Everything in the room swam till the faces around me were mere patches of white. But I drew it, the letter “A”. There it was on the floor before me. Shaky, with awkward, wobbly sides and a very uneven centerline. But it was the letter “A.”

That one letter, scrawled on the floor with a broken bit of yellow chalk gripped between my toes, was my road to a new world, my key to mental freedom.

Brown’s next book, Down All the Days was published in 1970. It was described as the most important novel since James Joyce’s Ulysses. It became an international best seller and was translated into multiple languages. Brown became a celebrity and with the proceeds of his book sales built a custom designed house.

Christy Brown died on September 7, 1981. My Left Foot was adapted for the big screen and released in 1989.

For a short interview with Brown see the video below.

Did you know?

One of the earliest representations of disability was Hephaestus the Greek god of fire. He was the son of Zeus, king of the gods and Hera, queen of the gods. The Romans called him Vulcan. Accounts vary as to the origin of his disability. One legend has him thrown off Mount Olympus because he was born “shrivelled of foot.” Another suggests his foot was severely injured in the fall.

Hephaestus was the only Greek god who worked. He was a talented blacksmith who made the armour for Achilles. He is often portrayed as a working class hero and the god of technology. He and his wife Athene are considered the founders of civilization by the Greek poet Homer.

The winged chariot of Greek mythology may have been the first wheelchair. It was designed by Hephaestus to assist him to get around.Image description: Hephaestus returns to Olympus riding a winged chariot-car or chair. The chair is decorated with the heads, wings and tail of a crane. The god carries a double-headed smith’s mallet.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Receive your weekly copy of the Disability Digest.

The post Disability Digest #19 featuring Wendy and Phil Allen, Curtis Mayfield, Susan Sygall and Christy Brown first appeared on Al Etmanski.

Disability Digest #18 ( May 21- 31) featuring Alexander Pope the most quoted writer in the English language, poet Jane Kenyon and English suffragette May Billinghurst

aletmanski — Fri, 21 May 2021 02:44:01 +0000

Dear Reader

The photograph that graces this issue of the Digest is by Indonesian freelance photographer, Rusidah Badawi. Badawi was born without forearms and works with film, not digital. She uses a modified camera with a screw on the shutter button to make it easier for her to operate.

Also featured are Alexander Pope one of the most quoted writers in the English language, poet Jane Kenyon author of the famous poem Having it out with Melancholy and the “tricycle suffragette,” May Billinghurst.

The biases of storytellers and historians influence who and what we value in the present day. Unless we correct what history has overlooked these biases will continue into the future.

Please send your ideas for future issues via this form.

Enjoy– Al

PS: check out my new podcast series The Power of Disability. This week’s guest is Rabia Khedr the activist who “wears many hijabs.” Rabia is co-chair of the “Disability Without Poverty Initiative,” a national movement to ensure that the federal government follows through on its promise to establish a Canada Disability Benefit. “Being blind, I see things differently,” says Rabia.

May 21 is the birthday of Alexander Pope the English poet and satirist (1688). He had a quick wit and a gift for memorable phrases. He is the second most quoted writer in the Oxford Dictionary of Quotations after Shakespeare. He was largely self-educated because in those days Catholics were not admitted to universities. He taught himself to read in Latin, Greek, French and Italian and began churning out verse before he became a teenager.

Pope wasn’t afraid to express his opinions in public particularly about the wealthy. “We may see the small value God has for riches, by the people he gives them to,” he said. In return, the recipients of his satire described him as “the most notorious hunchback of the 18th century”. Pope seldom referred to his disability in his writing. One rare example is, “I cough like Horace, and tho lean, am short.” He was four feet six inches tall (1.4 metres.) Nowadays people speculate that he contracted spinal tuberculosis which limited his growth and caused his spine to curve.

His Essay on Criticism gave us many well-known proverbs: “To err is human; to forgive, divine,” “Fools rush in where angels fear to tread,” and “A little learning is a dangerous thing. Drink deep, or taste not the Pierian Spring.” In Greek mythology, the Pierian Spring was the fountain of knowledge.

Pope died on May 30, 1744. He is considered one of the greatest English poets of all time. I can’t resist another quote: “Teach me to feel another’s woe, to hide the fault I see, that mercy I to others show, that mercy show to me.”

May 23 is the birthday of New Hampshire’s poet laureate, Jane Kenyon (1947). Kenyon’s poetry books sold well. She appealed to a devoted readership because of her confident, plain language writing style. She seldom used metaphors and focused on everyday life and the natural world around her. “For me, poetry comes out of silence,” she said.

Kenyon wrote regularly about her lifelong struggle with depression. Her most famous poem in that regard is “Having it out with Melancholy” which appeared in her last collection of poetry, Constance.

The poem opens with a quote from Chekhov’s The Cherry Orchard: “If many remedies are prescribed for an illness, you may be certain that the illness has no cure.”

Kenyon begins by describing depression’s constant presence in her life:

When I was born, you waited
behind a pile of linen in the nursery,
and when we were alone, you lay down on top of me, pressing
the bile of desolation into every pore.

And from that day on
everything under the sun and moon
made me sad — even the yellow
wooden beads that slid and spun
along a spindle on my crib.

She refers to her depression as a “mutilator of souls,” “an unholy ghost,” and a “crow who smells hot blood.”

Day and night
I feel as if I had drunk six cups
of coffee, but the pain stops
abruptly. With the wonder
and bitterness of someone pardoned
for a crime she did not commit
I come back to marriage and friends,
to pink fringed hollyhocks; come back
to my desk, books, and chair.

The poem ends with a description of her “ordinary contentment”:

What hurt me so terribly
all my life until this moment?
How I love the small, swiftly
beating heart of the bird
singing in the great maples;
its bright, unequivocal eye.

Kenyon died of cancer at the age of 47 in 1995. “Tell the whole truth. Don’t be lazy, don’t be afraid, “ she advised writers. “Close the critic out when you are drafting something new. Take chances in the interest of clarity of emotion.”

Click here for Amanda Palmer’s beautiful reading of Having it Out With Melancholia.

May 31 is the birthday of English suffragette and women’s rights advocate Rosa May Billinghurst (1875). She survived polio as a child and got around by wearing leg irons, using crutches and pedalling a modified tricycle by hand. As a young woman, she and her sister began supporting poor children who lived in the slums, and women who lived in what were called workhouses because they could not support themselves. Exposure to those injustices led her to join the suffrage movement which was picking up steam in the early 1900s. “I thought surely if women were consulted in the management of the state, happier and better conditions must exist for hard-working sweated lives such as these… It was gradually unfolded to me that the unequal laws which made women appear inferior to men were the main cause of these evils,” she said.

Billinghurst became known as the “cripple suffragette,” or the “tricycle suffragette,” by the press and her peers. She didn’t hesitate to ram into police officers with her tricycle. Billlinghurst went to jail several times. “This is a women’s war,” she told the jurors at one of her trials, “in which we hold human life dear and property cheap, and if one has to be sacrificed for the other, then we say let property be destroyed and human life be preserved.”

On another occasion, she, and other imprisoned suffragettes, went on a hunger strike. Authorities tried to force feed them through the nose. Billinghurst became so ill she was released after two weeks. “The government may further maim my crippled body by the torture of forcible feeding, as they are torturing weak women in prison today,” she stated at a subsequent trial. “They may even kill me in the process, for I am not strong, but they cannot take away my freedom of spirit or my determination to fight this good fight to the end.”

The first stage of the good fight ended in 1918, when property-owning women age 30 and older were given the right to vote in England. Ten years later, women 21 and older were given the same voting rights as men. Little is known of Billinghurst’s life after these achievements. She died on July 29, 1953, at the age of 78. “We are not hooligans seeking to destroy but we mean to wake the public mind from its apathy,” she said.

Did you know?

NASA has relied on the insights of people with disabilities since the origins of the space program. In the late 1950s, they recruited eleven men from Gallaudet College (now Gallaudet University), a school for d/Deaf students to test how the body might react to the stomach-churning rigours of spaceflight. NASA needed people who were immune to motion sickness and the Gallaudet Eleven fit the bill because spinal meningitis had damaged their inner ear. Some of these space pioneers are pictured about in a zero-gravity aircraft.

“We were different in a way they needed,” said Harry Larson one of the Gallaudet Eleven. Even the famous John Glenn one of America’s first astronauts was envious of their ability to not get sick during the punishing tests they were all subjected to.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Receive your weekly copy of the Disability Digest.

The post Disability Digest #18 ( May 21- 31) featuring Alexander Pope the most quoted writer in the English language, poet Jane Kenyon and English suffragette May Billinghurst first appeared on Al Etmanski.

Disability Digest #17( May 12- 19) featuring Stevie Wonder, David Smith, Michelle Dawson, Stacey Milbern and Michelle Amiere.

aletmanski — Thu, 13 May 2021 03:50:17 +0000

Dear Reader

Painter, photographer, sculpturer Michelle Amerie created the Irises that open this issue of the Disability Digest. In her spare time she is a spokesperson for the MS Society which includes rappelling down high rise buildings in her wheelchair. During the pandemic Michelle converted her original art pieces onto face masks. Check out her extensive selection and order details here. Wearing a beautiful piece of art is the perfect antidote to the pandemic doldrums. It’s also an affordable luxury.

Also featured in this issue are Motown legend Stevie Wonder, politician David Smith, autism researcher Michelle Dawson and disability justice pioneer Stacey Milbern.

You can help influence the future by correcting the past. Send your comments and suggestions via this form. And if you like what you’re reading please spread the word.

Enjoy– Al

PS: check out my new podcast series The Power of Disability. This week’s guest is artist Carmen Papalia. His performance art focuses on the nub of democracy, caring trusting relationships. If you want a sense of where the disability movement is heading check out our conversation.

“The heart of Disability Justice,” says Papalia “is mutual aid, which means building a capacity for care that isn’t otherwise available.”

May 13 is the birthday of musical legend and Motown sensation Stevie Wonder (1950). Wonder was just 11 years old when Motown signed him to a contract in 1961. Since then, he has used his voice to earn more GRAMMY awards than any other solo artist. He also won an Academy Award for best song (I Just Called to Say I Love You), the Polar Music Prize, and the Montreal Jazz Festival Spirit Award. Wonder is one of the first artists to secure his artistic freedom by writing, producing, arranging and performing his own songs. Songs in the Key of Life is his best selling and most critically acclaimed album. “Life has meaning only in the struggle. Triumph or defeat is in the hands of the gods. So let’s celebrate the struggle,” he says.

Wonder now uses his voice to make the world more inclusive. He was a strong advocate for ending apartheid in South Africa. He was instrumental in the campaign to make Martin Luther King Jr.’s birthday a U.S. national holiday. In fact he put his career on hold for three years to lead rallies in support of the proposal. “As an artist, my purpose is to communicate the message that can better improve the lives of all of us,” he told a crowd in Washington DC in 1981. The first official Martin Luther King, Jr. Day, was held on January 20, 1986. It was celebrated with a concert, headlined by Wonder. “If we cannot celebrate a man who died for love, then how can we say we believe in it?” he asked the crowd.

Since 2009, Wonder has been a United Nations Messenger of Peace with a focus on persons with disabilities. “The more people who are doing things that make a difference and are part of this world of inclusion,” he said, “the smaller the world gets of people who are not committed and ultimately we will end up with a world of inclusion.”

Wonder had a kidney transplant in December 2019. “I feel like I’m about 40 right now,” he said. “Now I want the world to get better,” he added. “I want us to get beyond this place. I want us all to go to the funeral of hate. That’s what I want.”

May 16 is the birthday of Canadian politician and Senator, David Smith (1940). In 1981 he chaired Canada’s first parliamentary committee on disability. It produced Obstacles: The Report of the Special Committee on the Disabled and the Handicapped.

Although Smith did not have a disability, he was also instrumental in ensuring disability was added to the Canadian Charter of Rights and Freedom. He actively lobbied behind the scenes. When former Prime Minister Pierre Trudeau told him disability would be included, Smith told an interviewer he was, “a bucket of tears.”

Smith died in February 2020, at the age of 78.

On May 17, 2017, self-taught autism researcher Michelle Dawson received the Order of Montréal. Her citation read in part: “She has documented the poverty of scientific and ethical standards in autism intervention research, and the resulting harm to autistic people…she believes that in research, as elsewhere, autistic and non-autistic people should work together as equals.” Dawson describes herself as an “off message autistic researcher” and emphasizes that “Almost everything about me on Wikipedia is wrong.”

She is a member of Montreal psychiatrist Laurent Mottron’s university research team even though er only academic credential is a high school diploma. Now she has an Honorary Doctorate. She and Mottron have co-authored more than a dozen papers and several book chapters. Their approach to research complements each other. She is bottom up, finding ideas from the facts. He is top down, coming up with an idea and then checking to see if the idea fits the facts. People describe them as the odd couple.

“Dawson knows the scientific literature as well as anyone. She is a library in the field of autism and cognitive sciences,” says Mottron. He credits Dawson with challenging his scientific perception of autism. And shifting his view that autism is a disease to be cured rather than a different way of looking at the world that should be honoured.

“Accurate information is always good for autistics,” Dawson wrote on her blog. “Only when people with differences have legal and human rights can they be ethically researched and ethically helped. Otherwise, it is neither ethical or scientific.” She added, “You can say anything is evidence-based if you set the standards of evidence low enough.”

In an article titled The Misbehaviour of Behaviourists she wrote, “We are in a society in which autistics have rights only if and when we resemble non-autistics. This is like being black in a society where blacks have rights so long as they become white.

On May 19 writer, activist and disability justice pioneer Stacey Milbern was born in Seoul, South Korea (1987). Milbern had muscular dystrophy and described herself as “just your everyday queer corean girl living in the south.” She grew up in North Carolina and moved to the San Francisco Bay Area when she was in her twenties. She became the director of programs at the Center for Independent Living, Berkeley and was appointed by President Obama to the President’s Committee for People with Intellectual Disabilities. She also became a founding member of the disability justice movement. Disability justice is a practice and a framework in which disability is understood both as an embodied experience and a socially constructed experience.

Milbern believed disabled people are resourceful out of necessity. During the early months of the pandemic she organized the Disability Justice Culture Club to help homeless people protect themselves against Covid. “The world literally isn’t made to house us …” she said. “So we get to be really creative problem solvers and aren’t constrained to boxes.” Disabled people often have solutions that society needs said Milbern. “We call it crip — or crippled — wisdom.”

Milbern died on May 19 due to complications from surgery. It was her 33rd birthday. Her New York Times Obituary reprinted her quote from a previous interview: “I would want people with disabilities 20 years from now to not think that they’re broken,” she said. “You know, not think that there is anything spiritually or physically or emotionally wrong with them.”

Did you know?

Hand signals in baseball were invented by William Hoy in the late 1800’s. Hoy was a talented centre fielder who holds the record for throwing three runners out at the plate in a single game and hitting the first ever grand slam home run in the American Baseball League. He was also deaf. That meant he couldn’t hear the umpires call and had to pause to ask his coaches. While awaiting their answer the pitcher often sneaked in another pitch so he devised hand signals that would enable him to keep his focus on the pitcher. The signalling proved useful to all players and quickly spread.

Today more than 1,000 silent instructions are given, from catcher to pitcher, coach to batter or fielder, fielder to fielder, and umpire to umpire during a regular nine-inning baseball game.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Receive your weekly copy of the Disability Digest.

The post Disability Digest #17( May 12- 19) featuring Stevie Wonder, David Smith, Michelle Dawson, Stacey Milbern and Michelle Amiere. first appeared on Al Etmanski.

Disability Digest #16 (May 6-11) featuring Maria Montessori, Anne Strike, Lauren Potter and Tom Shakespeare

aletmanski — Wed, 05 May 2021 22:17:34 +0000

Dear Reader

This issue of the Disability Digest highlights renowned educator Maria Montessori, athlete and diversity campaigner Anne Strike, Glee actor, Lauren Potter and British academic and activist Tom Shakespeare. The world is so much more wonderful with their presence, creativity and contribution, isn’t it?

The picture above is from Time-Lapse: Post-Humous Conversations—A Geoff McMurchy Retrospective, curated by artists SD Holman and Persimmon Blackbridge.

You can help rewrite history by sending your comments and suggestions for future issues via this form. And if you like what you’re reading do spread the word.

Enjoy – Al

PS: check out my new podcast series The Power of Disability. It’s a partnership with Simon Fraser University’s Below the Radar podcast. My first guest is Victoria Maxwell who describes herself as the “bi-polar princess.” This week’s conversation is with Judy Heumann who was featured in Crip Camp: A Disability Revolution nominated for a 2021 Academy Award for best documentary.

On May 6th Italian pediatrician and educator Maria Montessori died (1950). The Montessori Method of early childhood education emerged out of her experience working with children with intellectual disabilities who lived in an Italian institution. She was horrified by the barren setting and dismissed the caretakers who treated the children with contempt. That experience taught Montessori that children were not empty vessels waiting to be “filled up” by teachers. Instead, she realized that children had the power to educate themselves and the job of the teacher was to recognize and nurture the unique gifts of each child. “Never help a child with a task at which they feel they can succeed,” she wrote. Her respect for children is embedded in her motto, “Help me to help myself.”

According to the American Montessori Society the Montessori Method has been “time tested, with over 100 years of success in diverse cultures throughout the world.” The teaching methods and materials she developed were later adapted for use in regular classrooms, eventually benefiting all children. 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. “Children are human beings to whom respect is due, superior to us by reason of their innocence and of the greater possibilities of their future,” she said.

Montessori was nominated for the Nobel Peace Prize three times. The inscription on her tomb says: “I beg the dear all-powerful children to unite with me for the building of peace among people and in the World.”

May 8 is the birthday of British Paralympic wheelchair racer and human rights campaigner Anne Wafula Strike (1969). Strike was born in rural Kenya. She contracted polio when she was two and became paralyzed below the waist. There were no wheelchairs available growing up. She describes using heavy crutches and steel calliper leg braces to “drag and pull myself along.” Her mother died when she was young. She and seven siblings were raised by their father. “If it wasn’t for my father telling me I had a special place in this life, I wouldn’t be here now. I now believe nothing disables me more than staying silent on the things that impact me.”

Strike is the first member of her family to graduate from college. She met her husband while teaching in Kenya. They married and settled in the UK. She became an athlete by accident. She wanted to lose weight after the birth of her son and was thinking of going to a gym when someone suggested she should try disabled sport. In 2004 she became the first wheelchair racer from Sub-Saharan Africa to compete at the Paralympics, representing Kenya at the Athens Games. She became a British citizen in 2006 and represented that country in the London Games.

Strike’s mission is to campaign for diversity and inclusion. “I have seen pain in the eyes of young girls, whose ambitions have been taken away just because they are girls; I have experienced the struggle that black people face in order to be recognised as equal even in 2020,” she told an interviewer. She believes that disrupting the status quo is a powerful driver of change. Her focus is making sure the voices of disabled women are heard within the women’s movement. “To me diversity is being invited to the party; inclusion is being asked to dance. I want to dance,” she said in her Ted Talk.

In 2019, Anne was recognized as one of the 100 leading Black women in the world. “Climb the mountain so you can see the world, not so the world can see you,” she said.

May 10 is the birthday of American actress, advocate, and comedian Lauren Potter (1990). Potter is best known for playing one of the most famous cheerleaders in history, Becky Jackson on the TV show Glee. Her Becky isn’t the sweet, loveable personality often attributed to people who have Down syndrome. She’s feisty and sassy. “You should see my dance moves,” says Becky. “My mom says I have Get Down Syndrome.” She can be mean and disagreeable. She schemes with coach Sue Sylvester to destroy the school’s Glee club. “I’m Queen Bee, and I can sting like a bitch!”

Off screen Potter is just as witty and poised. Potter knows the difference between a good joke and a mean-spirited one. “I have Down syndrome and human decency,” she recently tweeted. She uses her celebrity status to disable bullying and name calling. “I want to live in a world where people care about others and try not to hurt others with words or actions,” she says. She is featured in the children’s book, Good Night Stories for Rebel Girls Vol 2. “Only listen to those people who tell you that you can do it,” she said. “Not those who tell you that you can’t.”

May 11th is the birthday of English activist, author, and professor of disability research Tom Shakespeare (1966). He describes himself as a farmer of thoughts. Multi-talented, he has performed as a comedian and dancer, and won the TV quiz show 500 Questions. He is a regular commentator on BBC radio. He has written or edited more than ten books, authored three TV documentaries and written for the medical journal, The Lancet. Shakespeare inherited the title Baron from his father but never uses it. Both he, his father and his children have achondroplasia, a form of dwarfism. In 2008 he injured his spinal cord and now uses a wheelchair.

Shakespeare was part of the team at the World Health Organization in Geneva which produced the first World Report on Disability (2011). They concluded that 15% of the world’s population had a significant disability. “Disability is not a minority issue, affecting only those people defined as disabled people,” he writes. “It is a universal experience of humanity.”

His specialty is the sociology of difference. In a YouTube presentation he explains: “What we want is for you, regardless of differences, to be able to speak with anybody else as an equal. Not to vaporize the group and say our group is better than your group and give us place to speak and only we can define ourselves…But to make sure individuals can be recognized and have parity of participation as ‘parity peers.’”

Shakespeare’s most recent book is Disability: The Basics, a short book for lay readers about the social, historical and cultural aspects of disability. “Disability is not a tragedy, but it’s not an irrelevant difference.…” he writes. “Good societies enable people to cope with this predicament by removing barriers, providing supports and by treating disability as part of normal human variation, rather than an abnormality to be discarded.” He concludes his book with this thought provoking sentence, “Everyone affects disability.”

Did you know?

Disability culture was a winner at the Oscars.

Crip Camp was nominated for best documentary. It chronicled the role played by disabled people who attended a summer camp in New York in the passage of the Americans with Disability Act. It featured activist Judy Heumann who is pictured above wearing her Oscar-designed champagne silk satin pantsuit.

“This is a landmark film that is telling a story that too many people in the Disability community and the general society do not know,” said Heumann. “Crip Camp is making disabled people around the world feel pride and enabling people to speak up against discrimination and to fight for Justice for All.”

In addition, The Sound of Metal was nominated for 6 Academy Awards including best film. It’s a film about a young drummer who is losing his hearing and confronted with life in the Deaf world. The film featured actor Paul Raci, a child of two deaf parents who during the ceremony was seen using American Sign Language.

Then there was Feeling Through, a short film about a late-night encounter between a teen and a deaf-blind man. Executive produced by Oscar-winner Marlee Matlin, she cast the first-time actor Robert Tarango, who happens to be blind and deaf himself.

The awards ceremony this year also featured a ramp and audio description for the first time.

(For more details about this historic cultural moment read Jonathan Kaufman’s column in Forbes.)

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Receive your weekly copy of the Disability Digest.

The post Disability Digest #16 (May 6-11) featuring Maria Montessori, Anne Strike, Lauren Potter and Tom Shakespeare first appeared on Al Etmanski.

Disability Digest #15 (April 27-30) featuring Merissa Hylton, Antonio Gramsci, Jillian Mercado and Lynn Manning.

aletmanski — Tue, 27 Apr 2021 04:51:06 +0000

Dear Reader

There are two ways disability is erased from history. One is to completely ignore the person with a disability, their presence and contribution. The other is to erase all traces of the person’s disability. That’s the situation with Italian cultural critic and politician Antonio Gramsci who is featured below.

The sculpture that begins this issue is by Merissa Hylton, a UK based artist, sculptor, painter, potter and textile artist. ‘I Am Here – Acceptance‘ is her exploration of the inter-sectional relationship between race, gender and disability. It also represents Hylton’s acceptance of her disability by redirecting the gaze from the first person to the third person. Hylton has Amniotic Band Syndrome which means she doesn’t have fingers on her right hand.

This issue also features Scottish mystery writer Ian Rankin, playwright and Paralympian Lynn Manning, and fashion model Jillian Mercado.

Enjoy – Al

PS: check out the new podcast series The Power of Disability. It’s a partnership with Simon Fraser University’s Below the Radar podcast. My first guest is Victoria Maxwell who describes herself as the “bi-polar princess.”

This week in history ...

On April 27 Antonio Gramsci Italian theoretician, philosopher and politician died (1937). The phrase most commonly associated with him is: “Pessimism of the intellect, optimism of the will.” Gramsci had tuberculosis of the spine when he was a child. This caused his spine to curve and resulted in his short stature. That part of his being is seldom acknowledged. Books do not reference his disability. Photographs only show his head and shoulders. The picture above is one of the few that captures his full presence. He is the one in the centre of the picture, smiling and standing beside the man holding a child.

Gramsci’s ideas are alive today. They are used by community organizers and adult educators. Paulo Freire’s consciousness raising, liberation theology and participatory action research are three examples. Gramsci’s belief that every aspect of life is political is similar to the feminist slogan, “the person is political.” Distinguished disability scholar Sir Tom Shakespeare considers Gramsci, “a disabled role model.”

Everyone is an intellectual, Gramsci asserted. “Educate yourself because we need all your intelligence,” he wrote. “Stir yourselves because we’ll need all your enthusiasm. Organize yourselves because we’ll need all your strength.”

Gramsci was one of the founders of the Italian Communist Party. Despite being an elected member of Parliament he was imprisoned by Mussolini’s fascists. At his trial the prosecutor argued, “We must stop his brain from working for 20 years.” Despite rigorous censorship he filled 30 notebooks and wrote 3,000 pages of history and analysis during his imprisonment. They are published in his three-volume Prison Notebooks.

Gramsci was released from prison in 1937 because of ill health and died shortly after. “Nothing is lost if belief and consciousness remain intact, if bodies surrender, but not souls,” he wrote.

On April 28 Scottish mystery writer Ian Rankin was born (1960). His Inspector Rebus detective series is so popular it accounts for more than 10% of all crime books sold in the UK. Described as ‘Tartan Noir,’ his books capture the dark, gritty, shadowy, criminal underworld of urban Scotland. In real life, Rankin believes the streets of Edinburgh are a crime against disabled people. The broken pavement, cobblestones and narrow walkways are a hazard for wheelchair users including his son Kit he says.

Kit was born with Angelman Syndrome, a genetic disorder that affects the nervous system. Nowadays Rankin is using his celebrity to speak out against the discrimination experienced by disabled people during the pandemic. They are being kept in isolation away from family and are a low priority to be vaccinated.

“The disabled don’t have a voice,” he told an interviewer. “They’ve never had a voice and laterally we’re starting to hear their representatives, their family and friends, yelling. Sometimes it needs someone with a public voice to come forward and then people take notice.”

April 30 is the birthday of Lynn Manning American playwright, poet, actor and Paralympian (1955). Manning and his eight siblings grew up in foster care. He lived in six foster homes and attended nine schools. When he was twenty-three he was shot in the face and blinded after a disagreement during a pinball tournament. His assailant was never found. “I sincerely hope he gets what’s coming to him, but I don’t dwell much on it,” he told a newspaper reporter. “Some say it’s important for a victim to get closure, but I think if you need that sort of thing to move forward, you’re still a victim.”

Manning excelled at judo, becoming a world champion. He won a silver medal at the 1992 Barcelona games. He is best known for his autobiographical work “Weights” which explored the complexities of life as a blind, African-American man. The title comes from Manning’s mother’s reaction to the news of his blindness. She said, “I couldn’t be so strong.” He replied, “you have to lift weights.”

In his poem “The Magic Wand,” Manning lists the prejudices he encountered daily:

Quick-change artist extraordinaire,
I whip out my folded cane
and change from Black Man to “blind man”
with a flick of my wrist.
From God-gifted wizard of round ball
Dominating backboards across America
To God-gifted idiot savant
Pounding out chart busters on a cockeyed whim;
From sociopathic gangbanger with death for eyes
To all-seeing soul with saintly spirit …

Manning died of liver cancer on August 3, 2015. “My final form is never of my choosing,” he wrote. “I only wield the wand; you are the magician.”

April 30 is the birthday of fashion model and actor Jillian Mercado (1987). Mercado has muscular dystrophy. She fell in love with fashion at an early age, (her mother is a seamstress). Fashion was her family. It was where she felt at home. “I was able to express my creativity as “out-there” as I wanted to,” she said. Then the reality hit home that there wasn’t anyone in the fashion industry who looked like her. “I was confused,” she said “because I knew how big my disability community is, yet we were not acknowledged. I got really sad about it until I woke up one morning and I was like “I’m so tired of being tired.” You know that feeling where you’re just like “I’ve had it?”

That’s the reason she founded Black Disabled Creatives. “By showcasing creatives on a global scale, we aim to not only offer an accessible platform for hiring personnel but to help bridge the divide for creatives with disabilities,” she wrote on their website.

Mercado currently stars as the immigration lawyer, Maribel Suarez on, The L Word: Generation Q. “Hopefully my character and role on the show can bring hope and change. I want a dramatic change in the industry.” She says you can’t talk about race and inclusion without including the disability community.

“We all live on one planet and we all need to help each other grow together,” she says.

Did you know?

People with disabilities in the Democratic Republic of Congo are dying of starvation. Before Covid they could earn as much as fifteen dollars a day. Today, that amount has dwindled to fifty cents says Jacques Bisimwa Mitima, pictured above. He is President of the Association of People with Physical Disability in his region. People with disabilities do not receive financial support from government in his country. That’s why his group is voluntarily “taxing” themselves to cover medical expenses and funeral costs for those who have no money.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

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The post Disability Digest #15 (April 27-30) featuring Merissa Hylton, Antonio Gramsci, Jillian Mercado and Lynn Manning. first appeared on Al Etmanski.

Disability Digest #14 (April 22- 25) featuring Lucy Maud Montgomery author of Anne of Green Gables

aletmanski — Wed, 21 Apr 2021 17:57:01 +0000

Dear Reader

This Digest is written to recognize people with disabilities for who they really are: authoritative sources on creativity, resilience, love, resistance, science, adversity, a good life and so much more. In a small way we hope this Digest can help take control of the past, correct what the history books have overlooked and influence the future.

The issue begins with an illustrated poem by Kirsteen Main. Her debut collection of poetry, Dear Butterfly was published on April 25th, 2014, (ORDER). This issue also profiles acting sensation Zack Gottsagen, jazz legend Charles Mingus, and authors Jean-Dominique Bauby and Lucy Maud Montgomery.

You can help correct what history has overlooked by sending your comments and suggestions for future issues via this form.

Enjoy! – Al

This week in history ...

April 22nd is the birthday of actor Zack Gottsagen (1985). He is the lead character in the popular road trip movie, Peanut Butter Falcon. His co-stars are Shia LaBeouf and Dakota Johnson. Gottsagen always knew he wanted to be an actor and began performing and dancing in his home state of Florida when he was a child. He studied acting at Zeno Mountain Farms, a film studio committed to featuring people with disabilities in every aspect of filmmaking. Gottsagen created his big break himself. He asked filmmakers Tyler Nilson and Michael Schwartz to write and direct a film for him. “I’m ready to be a movie star,” he told them. They were so taken with Gottsagen’s devotion to his craft and his love of wrestling they decided to write Peanut Butter Falcon to showcase his talent. When offered a hefty sum to feature an A-list actor to play Gottsagen’s character they turned it down.

Peanut Butter Falcon has enjoyed massive popular and critical success with a 95% rating on review aggregator Rotten Tomatoes and box office earnings over $20 million, making it the biggest indie hit of 2019. “Talent… that’s all I’ve got!” said Gottsagen. “I love to act.”

April 22nd is the birthday of jazz legend Charles Mingus (1922). Mingus was a musical prodigy. He became a jazz bassist because racial discrimination and poverty prevented him from pursuing a career in classical music. Nevertheless the Library of Congress placed his music scores besides those of Mozart and Beethoven. “Making the simple complicated is commonplace; making the complicated simple, awesomely simple, that’s creativity,” he said.

Mingus developed ALS in 1977 which prevented him from playing and eventually affected his voice. He continued to compose by humming the melodies and instrumental parts into a tape recorder. His last album was a collaboration with singer Joni Mitchell who added lyrics to his melodies. Mingus viewed the album as his epitaph. “My music is alive,” he said. “It’s about the living and the dead, about good and evil.”

The album was called Mingus when it was released in 1979 shortly after his death. Today it’s known as A Chair in the Sky after a song on the album that Mitchell composed in honour of Mingus. When Mitchell first met Mingus he was sitting in his wheelchair in his Manhattan high-rise. “He was a very commanding figure. It was like he was enthroned,” she said. “It seemed like a regal position.” Shortly before his death Mingus told his wife, “Next time I want to be a star. I want to be flashing all night long. A star stays up there till it burns out and becomes something else.”

On April 23rd Jean-Dominique Bauby journalist and editor-in-chief of ELLE magazine was born (1952). In 1995 at the age of 43 he had a massive stroke. When he woke up from his coma the only part of his body that he could move was his left eyelid. Bauby spent the rest of his days in a hospital on the coast of France; the routine of doctors and therapists interspersed with visits from his two young children. He began to compose a monthly newsletter and then his book, The Diving Bell and The Butterfly. Bauby would compose and edit entire chapters in his head in the mornings, and then dictate it, a letter at a time, to his secretary Claude Mendibil (picture above with Bauby). She would recite the alphabet slowly and he would blink when she came to the correct letter.

Previously Bauby had been immersed in France’s cultural life. Now he cultivated, “the art of simmering memories,” inside what he described as a giant invisible diving bell. “My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court,” he wrote.

Bauby’s memoir was published two days before he died. It was made into a film in 2007. “I need to feel strongly, to love and admire, just as desperately as I need to breathe,” he said. A documentary featuring Bauby himself is available here.

On April 24 Lucy Maud Montgomery, the author of the Anne of Green Gables series died (1942). Montgomery’s early life was the opposite of her heroine Anne. Her mother died from tuberculosis when she was two. Her father moved to Saskatchewan leaving her in the care of grandparents who were strict and not affectionate. Montgomery credits this lonely time of her life as helping to develop her creative mind. She began journaling when she was nine years old. Her family considered writing to be a waste of time so she worked in secret. “I struggled on alone, in secrecy and silence. I never told my ambitions and efforts and failures to any one. Down, deep down, under all discouragement and rebuff, I knew I would ‘arrive’ some day,” she wrote.

Montgomery’s adult life was also full of challenges, including depression. “I’m possessed body and soul by this oppression,” she wrote in her journal. Montgomery’s son observed that though his mother experienced great peaks, “she also fell to great depths emotionally.”

In 2008, on the 100th anniversary of the publication of Anne of Green Gables, Montgomery’s granddaughter Kate Macdonald Butler stated that their family wanted to lift the stigma associated with mental illness. And “sweep away the misconception that depression happens to other people, not us—and most certainly not to our heroes and icons.” The family now believes that Montgomery took her own life.

“They say women shouldn’t write, some days I almost give up. But I cannot contain my imagination. I made Anne real. I gave her my love of nature, my love of books and my childhood dreams,” Montgomery wrote in her autobiography.

Did you know?

An invisible disability can include, but is not limited to: cognitive impairment, head injury, autism, multiple sclerosis, myalgic encephalitis, chronic fatigue, and fibromyalgia, d/Deaf and/or hard of hearing, blindness and/or low vision, lupus, HIV positive, Crohn’s disease, colitis, Lyme disease, endometriosis, diabetes, anxiety, depression, PTSD, and more.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Receive your weekly copy of the Disability Digest.

This project is a collaboration between Al Etmanski, Plan Institute, and Planned Lifetime Advocacy Network (PLAN).

The post Disability Digest #14 (April 22- 25) featuring Lucy Maud Montgomery author of Anne of Green Gables first appeared on Al Etmanski.

Disability Digest Issue #13 (April 12-17) Featuring Anne Sullivan, Helen Keller’s teacher and friend

aletmanski — Mon, 12 Apr 2021 01:46:57 +0000

Dear Reader

Welcome to the April 11-17th edition of the Disability Digest.

In researching The Power of Disability I discovered that people with disabilities have been major players throughout history. If you were to take away their contributions you wouldn’t recognize the world. It would be a much different place and in much rougher shape. That’s the purpose of this Digest, to correct what history has overlooked.

This issues highlights Anne Sullivan, Helen Keller’s teacher and friend, and who would not be pleased to be described as a “miracle worker.” It also features African blues legend Mariam Doumba, Nick Hornby author of About a Boy and High Fidelity and Ryan O’Connel’s breakthrough tv series Special.

You can help rewrite history by sending your comments and suggestions for future issues via this form. And if you like what you’re reading do spread the word.

Enjoy!

This week in history ...

On April 12th, 2019, the comedy series Special premiered on Netflix. The series is a tour de force for Ryan O’Connell who is the star, writer and executive producer. It is based on his memoir, I’m Special: And Other Lies We Tell Ourselves. The series has been described as a “raunchy comedy.” It’s about a twenty-something gay, disabled man who decides to leave his mother’s home in search of the life he desires.

The series is a breakthrough because the lead character, also named Ryan, is disabled and played by a disabled actor, the real life Ryan O’Connell. Just as important the lead character is a fully realized human being. He is snarky, quick witted, thoughtless, vulnerable and occasionally cruel.

The first season deals with the consequence of Ryan covering up his cerebral palsy by telling his co-workers that his disability is the result of a car accident. His reasoning – better to be unlucky than pitied. Instead of being liberated he becomes trapped. This leads to many situations of comic misunderstanding before Ryan learns how to be true to himself.

Season One received four Emmy nominations and a 96% ranking on Rotten Tomatoes. Season Two premieres on May 2nd.

“Real power can only be accrued through opportunities, and you need to be given the keys to tell your own story,” says O’Connell. He adds that: “When you are one of the first people to get a seat at the table you know that you are under scrutiny, but I also know as a storyteller that you cannot tell everyone’s story. You have to write from a place of truth and authenticity, and the more you do that, in a twist, the more universal your story will become.”

On April 14th Anne Sullivan teacher and longtime companion of Helen Keller was born (1866). Sullivan’s legend as the “miracle worker” was reinforced by a series of movies of the same name. Sullivan’s teachable moment linked the experience of water flowing over Keller’s fingers to spelling the word “water” on Keller’s palm. Keller, who was blind and deaf, later described the experience: “I knew then that ‘w-a-t-e-r’ meant the wonderful cool something that was flowing over my hand. That living word awakened my soul, gave it light, hope, joy, set it free.”

Sullivan, who is kneeling beside the seated Keller above, became partially blind when she was five. She had a rough childhood, her mother died when she was 8, her father deserted the family and Sullivan was sent to an overcrowded institution run by cruel staff. She eventually persuaded authorities to send her to the Perkins School for the Blind where she graduated as valedictorian.

In 1887 she was hired by Helen Keller’s parents to teach their daughter. Sullivan’s relationship with Keller lasted 49 years. They lived and worked together, writing books, joining the vaudeville circuit as speakers, even appearing in a Hollywood docu-drama about their life. During Sullivan’s brief marriage her husband moved into the home she shared with Keller.

Sullivan never claimed credit for Keller’s ideas, but once explained in a letter, “Some one must always be at her side to read to her, to keep her typewriter in order, to read over her manuscript, make corrections and look up words for her, and to do the many things which she would do for herself if she had her sight.”

Sullivan died in 1935 at the age of 70. Her ashes are interred at the National Cathedral in Washington, D.C. When Keller died in 1968, her ashes were placed next to those of her teacher. In Sullivan’s manuscript Foolish Remarks of a Foolish Woman, she wrote, “Only in Helen have I kept the fire of a purpose alive. Every other dream flame has been blown out by some interfering fool.”

April 15th is the birthday of African superstar singer Mariam Doumbia (1958). She along with her husband are the legendary world beat music duo, Amadou and Mariam. They are both blind. They met at the Bamako Institute for the Blind in their home country of Mali. They now tour the world, maintaining a home in Paris. Doumbia says there is no link between blindness and music for them because they were musicians before becoming blind. She said they would have followed their musical path regardless.

Amadou and Mariam’s infectious music combines traditional African beats and melodies with blues, funk, reggae, disco, electronic synth-pop and hip-hop. They performed live at Obama’s 2009 Nobel Peace Prize ceremony in 2009. Watch and listen to their music here. You won’t be able to sit still.

Doumbia is also part of the African supergroup Les Amazones d’Afrique an all-female collective of musicians campaigning for gender equality in Africa.

“The audience knows we are blind,” explained Doumbia in an interview. “But it is our work – it is what we do – that counts most to them. People are surprised by the quality of our music, and the way we are able to play with other musicians, to fit into other kinds of music – that is what amazes them. It helps them realize that no matter whether you are blind or not, you can work, you can make music.”

April 17th is the birthday of British author and Academy award nominated screenwriter Nick Hornby (1957). He became successful writing “bloke-lit,” stories about football, women and music, populated by aimless and obsessive male characters. He credits his son Danny’s diagnosis of autism with changing the focus of his writing and his life. “I’ve got a kid who doesn’t want to play football, doesn’t want to read, and that’s my kid and I love my kid,” he said. “It would seem like a great act of disloyalty to him to wish he was some other way.” The boy in his novel About a Boy was inspired by his son.

In How to be Good he explores the idea of being a good person. You end up becoming more intelligent about things he told a reporter. “What constitutes love, what constitutes being human, what makes someone happy – what makes Danny happy.”

Hornby says that what has shocked him the most about dealing with the disability system is, “the inescapable sense that many of the professionals that parents have to deal with are regarded as the enemy, and that if parents are to get anywhere, the enemy has to be defeated. I don’t believe that these people are bad, so what is going on here? The answer is that they have been forced, by circumstances beyond their control, to turn into gatekeepers… because there isn’t enough to go round, not because parents are demanding too much. Parents of children like my son really don’t need enemies, believe me. We need all the friends we can get.”

Did you know?

Author and poet Kenny Fries has developed a test for the representation of disability in culture.

In order to pass the Fries Test, a creative work needs:

to have more than one disabled character;
the disabled characters need to have their own narrative purpose other than the education and profit of a non disabled character;
the characters’ disability should not be eradicated either by curing or killing.

As a bonus check out Fries recent poem, Disability Can Save Your Life.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

Receive your weekly copy of the Disability Digest.

This project is a collaboration between Al Etmanski, Plan Institute, and Planned Lifetime Advocacy Network (PLAN).

The post Disability Digest Issue #13 (April 12-17) Featuring Anne Sullivan, Helen Keller’s teacher and friend first appeared on Al Etmanski.

Disability Digest #12 (April 1-7) – featuring Virginia Hall, the spy who terrified the Nazis

aletmanski — Thu, 01 Apr 2021 03:23:21 +0000

Dear Reader

Welcome to the Disability Digest.

If you are a first time reader, this Digest was created to correct what history has overlooked, the contributions of people with disability. Since the beginning of time people with disability have produced exquisite works of art, made us laugh, and touched our souls. They have fought for justice, been instrumental in the growth of freedom and democracy, and unveiled the secrets of the universe.

As you will soon discover disabled people are still doing all these things and more. Each issue of the Disability Digest leads with a work of art, followed by short profiles, important dates and Did-you-know facts.

This issue highlights film maker Bonnie Sherr Klein, spiritual teacher Ram Dass, and the most decorated spy of WW2, Virginia Hall.

Enjoy – Al

This week in history ...

On April 1st award winning film maker and author Bonnie Sherr Klein was born (1941). Klein ran Studio ‘D’ the feminist unit at the National Film Board of Canada. She directed Not a Love Story a documentary about the pornography industry. It remains one of the Studio’s most commonly screened films.

Film making and feminism defined her identity until a summer weekend when the first of her two major strokes happened. Klein tells the story of her recovery and of settling into a new identity as a woman with a disability in her book, Slow Dance – A Story of Love, Stroke and Disability.

At the end of her book Klein writes:

Before my stroke, I had a mistaken notion that feminism meant “independence” ; the unspoken corollary was that disability (and aging) meant shameful dependence on others. What I have 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.

Klein’s most recent book is the children’s story Beep Beep Bubbie.

“Living with disability is an art,” says Klein. “Our various and unique disabilities compel us to create innovative paths around obstacles. In both content and form, we are taking risks that only we can take.”

Click here for a short video interview I did with Bonnie on the power of asking for help

On April 6th Virginia Hall, the spy who terrified the Nazis, was born in Baltimore Maryland (1906). Her dream of becoming a diplomat ended when she accidentally shot herself while hunting in Turkey. Her leg was amputated. She named her prosthetic leg “Cuthbert.” US State Department policy excluded anyone with “any amputation of a portion of a limb” from employment so she went to France to study. When WW2 broke out she joined the British spy service and became the first spy, sent to occupied France.

From her base in Lyon she operated a series of spy networks and safe houses. She trained 1,500 French resisters in guerrilla warfare. Her team blew up bridges, and supply lines. They rescued downed pilots and helped captured agents to escape.

Hall spoke several languages and excelled at disguise and evasion,. She was so effective that the notorious head of the Gestapo, Klaus Barbie “the butcher of Lyons,” ordered a France wide search to find her. He mockingly described her as the “Limping Lady.” His posters read: “The Enemy’s Most Dangerous Spy — We Must Find And Destroy Her!” Hall was never caught. She escaped by trekking across the Pyrenees in the winter.

After the war Hall was made an honorary member of the British Empire. France awarded her the Croix de Guerre. She also received the US Army’s Distinguished Service Cross for extraordinary heroism, the only one awarded to a civilian woman in WW2. She refused President Truman’s offer of a public ceremony. She opted for a private event (pictured above) with only her mother present because she had joined the newly formed CIA and thought the publicity would blow her cover. Despite her expertise and experience the CIA gave her a desk job. A declassified report eventually revealed that she was held back, “because she had so much experience that she overshadowed her male colleagues, who felt threatened by her.”

Virginia Hall left no memoir, gave no interviews and seldom spoke to her family about her days as a spy. A movie about her life, A Call to Spy, is available on Netflix. Here is a short History Channel profile. Her most recent biography is A Woman of No Importance by Sonia Purnell. In 2016, the CIA named a building after Hall. “Cuthbert” is on display in the CIA Museum.

On April 6th Ram Dass, spiritual teacher and author of Be Here Now was born (1931). Ram Dass means “servant of God.” In 1997 he had a stroke that paralyzed him on one side and limited his ability to speak. That’s when he learned, as he described it, to “surf the silence,” and to use a wheelchair.

“I don’t wish you the stroke, but I wish you the grace of the stroke,” he told an interviewer in the 2017 film Ram Dass: Going Home. “Make friends with change,” he said including changes to your body and the ultimate change, death. “Death is the biggest change we’ll face, so we need to practice change,” he added.

Ram Dass died in December 2019. He was eighty-eight. “Suffering only shows where you are attached,” he said. “That is why to those on the path, suffering is grace.”

Did you know?

More and more autistic people disagree with the April 2nd designation, World Autism Awareness Day. They believe that acceptance matters more than awareness. You can follow their reasons at #RedInstead, #ActuallyAustistic, and #autismacceptancemonth.

Autistic people chose the colour red to protest organizations who use the colour blue to promote awareness, while raising money for a cure. They don’t want “neuro-typicals” to speak on their behalf. They ask that you pay attention to autistic people. They want to be accepted for who they are. They do not want to be cured.

Three books by autistic people are:

Yaniv Janson’s art book, Please do Touch. The book connects art with the UN’s Sustainable Development Goals, and disability. “A Happy Sea” that begins this Digest is from that series.
Naoki Higashida’s The Reason I Jump. It was written when Higashida was 13 years old. It features his answers to 58 questions about his autism. It is now a major motion picture.
John Elder Robinson’s memoir Look me in the Eye. Robinson is a Neurodiversity Scholar in Residence, at William and Mary College.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

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This project is a collaboration between Al Etmanski, Plan Institute, and Planned Lifetime Advocacy Network (PLAN).

The post Disability Digest #12 (April 1-7) – featuring Virginia Hall, the spy who terrified the Nazis first appeared on Al Etmanski.

Disability Digest # 11 (March 25-31)

aletmanski — Thu, 25 Mar 2021 03:37:40 +0000

Dear Reader

This issue of the Disability Digest highlights blues guitarist Jeff Healey, lawyer Harriet McBryde Johnson, writer and political activist Alice Wong, and Black Beauty author Anna Sewell. What a more just, caring and beautiful world they have helped create.

I have exciting news. Beginning with the next issue two organizations dear to my heart, Plan Institute and PLAN, will take over distribution of the Disability Digest. This significantly expands the readership and fulfills one of my goals. There may be slight changes to the look of the Digest. Other than that I expect the transition to be seamless. Contact me if you’d like to distribute the Digest directly to your readers.

Thanks – Al

This week in history ...

On March 25 jazz and blues-rock singer guitarist and songwriter Jeff Healey was born (1966). Healey became blind when he was a year old due to a rare form of cancer. He taught himself to play the guitar at age 4 laying the instrument on his lap and playing it in much the same way as a pianist plays the keyboard. He was “discovered” in a Toronto club in 1982 by Texas blues guitarist, the late Stevie Ray Vaughan.

His hits include Angel Eyes and Hideaway which was nominated for a Grammy. His album See the Light reached platinum status in the United States. Healey also played the trumpet and clarinet in his own traditional jazz band, the Jazz Wizards. He collected as many as 30,000 old-time jazz records which he played as the host of an hour-long radio show on the Canadian Broadcasting Corporation.

In January 2007, Guitar Player magazine wrote, “Jeff Healey may be the only cat around who can play the prewar jazz of Louis Armstrong on the trumpet, and the heavy electric blues-rock of ZZ Top on the guitar.” Healey died in 2008. He was inducted into Canada’s Walk of Fame in 2014.

On March 25, 2002 the legendary debate between civil rights lawyer Harriet McBryde Johnson and Australian philosopher Peter Singer was held at Princeton University. Singer believes parents should have the option of killing their disabled babies at birth. Johnson opened the debate by saying, “ I was the child whose life you wanted to end.” She added, “the peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist.”

Johnson described Singer’s philosophy of extreme individualism as the product of an impatient, technologically obsessed age. In response to Singer’s assertion that disability made a person worse off Johnson replied: “Are we ‘worse off’ ? I don’t think so. Not in any meaningful sense … We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own.”

Johnson’s account of her debate with Singer was published in the The New York Times magazine under the title, Unspeakable Conversations. “The presence or absence of a disability doesn’t predict quality of life” she wrote. “I used to try to explain that in fact I enjoy my life, that it’s a great sensual pleasure to zoom by power chair on these delicious muggy streets, and that I have no more reason to kill myself than most people. But it gets tedious. God didn’t put me on this street to provide disability awareness training to the likes of them. In fact, no god put anyone anywhere for any reason, if you want to know.”

Johnson died in her home in June 2008. Her memoir is called Too Late to Die Young.

On March 27th Alice Wong, disabled activist, media maker, consultant and self-described proud Asian American nerd was born (1974). Wong has a master’s in medical sociology and works as an independent research consultant to support her true mission – spreading the stories and work of disabled people to the wider public. “Disability history and culture isn’t recognized or documented in our society, and yet we’re everywhere. You just have to notice,” she said. Wong became an accidental activist because she lives in a non-disabled world, “and surviving in it is a full-time activist occupation.”

She is the founder and director of the Disability Visibility Project ,which collects oral histories of people with disabilities. She helped create #CripTheVote, a nonpartisan online movement encouraging the political participation of people with disabilities. A science fiction enthusiast, Wong contributed the essay From Rabbit Holes to Wormholes: KidLit Memories, to Uncanny Magazine’s Disabled People Destroy Science Fiction issue. The issue provides an opportunity for the imaginations of people with disabilities “to run wild within the parameters of an endless sky.”

One of her latest projects is a campaign called Access Is Love, with Mia Mingus and Sandy Ho. Their aim is to build a world where accessibility is understood as an act of love and a collective responsibility, not the responsibility of a few individuals. “Almost every group can improve the way they include disabled people in their movements,” Wong wrote. She believes, “Everyone has the capacity to participate in big and small ways to make a difference.” She also believes “The revolution will be accessible and centred on diverse bodyminds.”

On March 30th Anna Sewell the author of Black Beauty was born (1820). At the age of fourteen she had an accident which left her unable to walk without assistance. She relied on horses to get around which fostered her respect for them and opened her eyes to their inhumane treatment. Sewell wrote Black Beauty to “induce kindness, sympathy, and an understanding treatment of horses.”

Published in 1877, her book contains detailed passages on how to care for horses. It was largely thanks to Black Beauty that England passed laws abolishing the mistreatment of horses, particularly the bearing rein. Black Beauty was Anna Sewell’s only book. She wrote it in the last few years of her life when she was in her 50’s, confined to bed and in declining health, the lingering effects of her childhood injury. She died 5 months after the book was published without any sense that it would sell 50 million copies and become the sixth best seller in the English language. She was paid twenty pounds for her story.

Did you know?

March 26th is Purple Day, an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. It was started by Nova Scotian Cassidy Megan in 2008. Megan has epilepsy. She wanted to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. Today Purple Day is celebrated in more than 85 countries. Participants are encouraged to wear purple and host events in support of epilepsy awareness.

Epilepsy is one of the world’s oldest recognized conditions, with written records dating back to 4000 BC. According to the World Health organization fifty million people worldwide have epilepsy.

Some famous people who have had epilepsy include the Roman Emperor Julius Caesar, the artist Vincent Van Gogh and rock star Neil Young.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

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The post Disability Digest # 11 (March 25-31) first appeared on Al Etmanski.

Disability Digest #10 (March 19-25)

aletmanski — Mon, 15 Mar 2021 02:50:24 +0000

Dear Reader

This issue of the Disability Digest highlights Valerie Rose the daughter of singer Phoebe Snow, actor and playwright James Sanders, Chinese poet sensation Yu Xiuhua, and the most popular artist in the world, Yayoi Kusama.

The world would be a less vibrant place without their presence and contributions don’t you agree?

Thanks – Al

This week in history ...

On March 19th Phoebe Snow’s daughter Valerie Rose died (2007). Valerie Rose was born in 1975, the same year her mother’s debut album turned gold. It included the song Poetry Man. The popular perception was that Snow threw her singing career away to care for her daughter. She may have left the fast track but she never stopped recording. “I have to do my career and I have to be a mother,” Snow said. “These are my two responsibilities. Of course the baby comes first.”

Snow refused the advice of doctors to place her daughter in an institution. “Out of the question. I would never do that. All I know is the moment I saw my daughter I fell in love with her,” she said. Snow told her daughter’s story at every concert. “Tonight, and every night for the rest of my life, I will dedicate every show to my daughter Valerie Rose.“ You’re My Girl off her 2003 album Natural Wonder was written for Valerie Rose who predeceased her Mom by 3 years.

Snow’s eulogy for her daughter included the following: “She loved dolphins and whales, classical music, swimming pools, flirting shamelessly, colourful t-shirts, rice pudding, popcorn and spaghetti. She was an outstanding, joyfully sloppy eater…She woke up singing every day. She laughed out loud during love scenes in movies. She laughed right out loud at the punch line of dirty jokes…”

March 20th is the birthday of actor, writer, and theatre impresario James Sanders (1970). During his third semester in theatre school, Sanders became quadriplegic as the result of a spinal cord injury. After a year of rehab, he returned to school to complete his training. Sanders believes the attitudinal barriers towards a person with a disability are more difficult to navigate than the physical barriers. He is the founding Artistic Director of Realwheels Theatre. In 2007 he wrote and starred in the award winning SKYDIVE a unique theatrical presentation in which Sanders and his non-disabled co-star literally took to the air soaring above the stage floor for the entire play.

Sanders makes sure that people with disabilities and their challenges are authentically portrayed in all his shows. He views disability as, “the landscape upon which universal issues are discussed — questions of identity and questions of what’s real. It just so happens that we have characters with disabilities telling sections of the story.”

Sanders can be seen currently on the Vancouver-shot Apple TV+ series Home Before Dark.

March 21st is World Down syndrome Day. For a different take on a disability that affects five and a half million people worldwide check out Drag Syndrome. They are a boundary pushing, British art collective comprised of professional entertainers with Down syndrome. “What’s wrong with being confident,” says Davina Starr pictured above, seated on your right.

A 6 minute film about Drag Syndrome won Jess Kohl best Director at the 2021 Fashion Film Festival Milano.

For an original jazz track by Sting starring people with Down syndrome check out this new music video.

On March 22nd Chinese poet Yu Xiuhua was born (1976). Her poem, Crossing Half of China to Sleep with You made her an overnight sensation and the voice of a rising feminist movement in her country. Yu Xiuhua says the title was a joke and the poem’s deeper meaning was about expressing her emotions and desires. Here is an excerpt:

“Across China, everything is happening: volcanoes erupting, rivers running dry, prisoners and exiles are abandoned, elk and red-crowned cranes are under fire.
I brave a hail of bullets to sleep with you. I compress countless dark nights into one dawn to sleep with you.”

Yu Xiuhua has a reputation for not backing down from a fight. Whether it is against being labelled a peasant poet because she lives in rural China. Or a disabled poet because she has cerebral palsy.

Yu Xiuhua’s arranged marriage was loveless. She began writing poetry at 27 saying she needed to do something to keep her spirits up. Once she became famous she used her book royalties to buy her husband a separate house and then divorce him.

Still Tomorrow is a documentary about her rise to fame and her refusal to live a life without love. Poetry, says Yu Xiuhua, is her spiritual walking stick when she is stumbling around in life. “Without poetry, life is empty…poems give me peace and tranquility.”

March 22 is also the birthday of artist, sculptor and designer Yayoi Kusama (1929). She was an integral part of the 1960s avant-garde scene in New York. The painter Georgia O’Keeffe was her business adviser. She became friends with Andy Warhol and influenced his painting style. In the early 70s the hallucinations that she had experienced since childhood increased in intensity. She returned home to Tokyo and checked herself into a psychiatric hospital where she still lives. The art world forgot about her for decades.

Today she is the most popular artist in the world, as calculated by the number of people who attend her installations in museums and art galleries. Kusama is called the “priestess of polka dots” because she paints polka dots on everything. She says it is her response to the waves of infinity and nothingness that threaten to dissolve her. Her most famous installation is the mirrored Infinity Room. Inside the room the individual is surrounded by floating, glowing orbs of every size, constantly changing colours. Kusama wants us to feel humbled. “Our earth is only one polka dot among million of stars in the cosmos,” she said. “Forget yourself. Become one with eternity. Far beyond the reaches of the universe, infinity is trying to communicate with us.”

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

The post Disability Digest #10 (March 19-25) first appeared on Al Etmanski.

Disability Digest #9 (March 10-15)

aletmanski — Mon, 08 Mar 2021 06:51:33 +0000

Dear Reader

In researching my book, The Power of Disability, I discovered that people with disabilities have been major players throughout history. Sadly the history books have missed most of their achievements, or given credit to someone else or ignored the person’s disability.

This issue highlights abolitionist and suffragist Harriet Tubman, politician Tammy Duckworth, scientist Stephen Hawking and sculptor Judith Scott. Please send your comments and suggestions via this form. And if you like what you’re reading do spread the word.

Thanks – Al

This week in history ...

On March 10th 1913, Underground Railroad conductor, and woman’s suffragist Harriet Tubman died. She was in her nineties. When she was 12 years old, Tubman was nearly killed by a two pound iron weight thrown at her by a slave owner. The subsequent head injury caused headaches, seizures, and narcolepsy for the rest of her life.

Tubman freed herself from slavery in 1849 by crossing the Mason-Dixon line. “I had crossed the line,” she recalled. “I was free; but there was no one to welcome me to the land of freedom. I was a stranger in a strange land; and my home after all, was down in Maryland; because my father, my mother, my brothers, and sisters, and friends were there. But I was free, and they should be free.” Tubman went on to free hundreds of enslaved people, including all members of her family, earning the nickname Moses. Despite the efforts of slaveholders, Tubman and the fugitives she assisted were never captured. “I was conductor of the Underground Railroad for eight years, and I can say what most conductors can’t say – I never ran my train off the track and I never lost a passenger.”

In her later years, Tubman worked to promote the cause of women’s suffrage working alongside Susan Anthony and Emily Howland. She is the first African American woman to be honoured on a U.S. postage stamp. In 2016 a decision was made to add her portrait to the front of the American $20 bill. No action was taken because Mr. Trump was a fan of Andrew Jackson whose face is currently on the bill. President Biden’s Treasury Department has revived the commitment.

On March 12th American politician Tammy Duckworth was born in Bangkok, Thailand (1968). She was the first woman to serve as a front line helicopter combat pilot in the U.S. military. While serving in Iraq her helicopter was shot down by a rocket-propelled grenade, and Duckworth lost both her legs. She was awarded a Purple Heart for her bravery.

She is the first disabled woman to be elected to the U.S. House of Representatives and the first sitting Senator to give birth while in office. “We must be an inclusive nation that respects and supports all of its citizens: a nation that doesn’t give up on anyone who hasn’t given up on themselves,” she said. Duckworth, who is a Democrat, once told a political critic: “These legs are titanium. They don’t buckle. Go ahead, take a shot at me.”

Duckworth is often asked to hide her wheelchair when being photographed. “People always want me to hide it in pictures. I say no! I earned this wheelchair. It’s no different from a medal I wear on my chest. Why would I hide it?,” she said.

On March 14th 2018, physicist, cosmologist, author, and professor Stephen Hawking died. Hawking was twenty-two when he was diagnosed with ALS (amyotrophic lateral sclerosis) a neurological condition that reduced his ability to control his muscles including those used for breathing. He was given a few years to live. Instead he lived another fifty years uncovering scientific secrets of the universe. Discoveries he attributed to his disability.”My disabilities have not been a significant handicap in my field…Indeed, they have helped me in a way by shielding me from lecturing and administrative work that I would otherwise have been involved in,” he said. His book A Brief History of Time became an international bestseller and was translated into more than 35 languages. When asked how he would design the universe differently he answered, “If I had designed it differently, it wouldn’t have produced me. So that is a meaningless question. I’m prepared to make do with the universe we have, and try to find out what it is like.”

Hawking turned being wrong and changing one’s mind from a weakness to a strength. “The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge,” he said. “Next time someone complains that you have made a mistake, tell him that may be a good thing because without imperfection, neither you nor I would exist.” His philosophy of life can be summed up in the following quote, “Remember to look up at the stars and not down at your feet. Try to make sense of what you see, and wonder about what makes the universe exist. Be curious.”

On March 15th 2005, celebrated fibre artist and self-taught sculptor Judith Scott died suddenly. At the age of seven Scott, who was born with Down syndrome, was put in an Ohio institution by her parents. Thirty-five years later her twin sister Joyce tracked Judith down and invited her to move across the country to California.

The rest is art history. Judith began taking lessons from fibre artist Sylvia Seventy. Something clicked. For the next eighteen years all Judith wanted to do was weave. She worked non-stop inventing a new type of sculpture. She wrapped, weaved and bundled yarn, thread, fabric and other fibres along with random household objects into visually complex, three dimensional, mixed media sculptures. She never repeated a form or colour scheme.

Today Judith’s cocoon and totem-like sculptures are found in museums and private collections around the world. She is hailed as “one of the most important artists of the twentieth century.” Her sculptures invite people to reach out and touch them. They are meant to disrupt our gaze and remind us that we feel as well as think. And that we can ‘know’ the world by touching it.

In 2006 the documentary film Outsider: the Life and Art of Judith Scott was made. You can view a short clip here and a BBC biographical profile here.

Did you know?

A new study published in Frontiers in Political Science, found that voters do not apply negative stereotypes when evaluating candidates with a disability. Rather, voters tend to perceive candidates with a disability as capable, honest, and caring. They are also assumed to be further to the left ideologically and more concerned about and competent in dealing with policy on healthcare, minority rights, and social welfare.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

The post Disability Digest #9 (March 10-15) first appeared on Al Etmanski.

Disability Digest #8 (March 1-8)

aletmanski — Mon, 01 Mar 2021 05:11:59 +0000

Dear Reader

In researching my book, The Power of Disability, I discovered that people with disabilities have been major players throughout history. Much more than I realized. If you were to take away their contributions, you wouldn’t recognize the world. The world would be a much different place and in much rougher shape. Sadly the history books have missed most of these achievements or have given credit to someone else.

This issue highlights Alexander Graham Bell, actor Micah Fowler, poet Amanda Gorman, and artist Maud Lewis. Please keep sending your comments and suggestions via this form. And if you like what you’re reading do spread the word.

Thanks – Al

This week in history ...

On March 3 inventor and educator Alexander Graham Bell was born in Edinburgh Scotland (1847). He is pictured above with his wife and daughters. Bell began his career as a teacher of deaf people. He invented the electrical speech machine, the forerunner of the telephone, to enable him to communicate with his mother and his wife Mabel both of whom were deaf.

Bell believed that deafness was a curse. He did not believe in sign language and used his influence to discourage its use and to prevent deaf teachers from teaching deaf students because they would bring sign language into the classroom. Instead he promoted oral speech and lip reading. Bell also believed that deaf people weakened society. He wrote a paper Upon the Formation of a Deaf Variety of the Human Race in 1883 which among many things recommended that deaf people not be allowed to socialize with each other or to marry other deaf people. He was a eugenicist who wanted to prevent the creation of a deaf race by preventing the birth of deaf children. “Those who believe as I do, that the production of a defective race of human beings would be a great calamity to the world, will examine carefully the causes that lead to the intermarriage of the deaf with the object of applying a remedy ,” he wrote.

Bell’s insistence that being deaf is a deficiency to be fixed and a culture to be eradicated still has negative consequences even though sign language is recognized as a perfectly valid method of communication and a fundamental language of the brain. Today Deafness is recognized as a culture with its own symbols, language, ways of being, and pride in identity.
Note: Those who identify with Deaf culture, use a capital ‘D.’ Otherwise, the lowercase ‘d’ is used to refer to the audiological condition of not hearing.

On March 5, 1998 Micah Fowler actor and star of the tv series Speechless was born. Fowler plays J.J. a sixteen year old boy who has cerebral palsy. J.J. is an authentic character not meant to serve as a source of inspiration for others. Instead he is complicated, funny, mischievous and occasionally a jerk. Fowler has cerebral palsy making him a rare example of a disabled person playing a disabled character. According to the Ruderman Foundation only 1-2% of tv characters are represented as disabled even though 20% of the world is disabled. And 95% of those roles go to non disabled actors.

Fowler says it bothers him when a non disabled person is, “portraying a character with a disability; it’s disheartening, inaccurate and at times feels borderline mocking. A person living with that disability can draw from real life experiences and bring depth, perspective, and an essence to the role that a person not having lived with a disability could not.”

On March 7, 1998 Amanda Gorman, the youngest inaugural poet in US history, was born. Gorman published her poetry book The One for Whom Food Is Not Enough in 2015. One of the most memorable parts of the inauguration of President Joe Biden was Gorman reading her poem, The Hill We Climb. Gorman says of her disability, “I don’t look at my disability as a weakness. It’s made me the performer that I am and the storyteller that I strive to be. When you have to teach yourself how to say sounds, when you have to be highly concerned about pronunciation, it gives you a certain awareness.”

Also on March 7th Nova Scotian artist and icon of the folk art movement Maud Lewis was born (1903). One of her paintings is presented above. Lewis lived in poverty all her life and never travelled more that 100 kilometres from her home in Digby, Nova Scotia. Lewis never took art lessons or saw another work of art. She was an intuitive artist, confidently and consistently painting the world as she saw it. “Just guessing my work up,” was how she described it. Her playful scenes of birds, butterflies, daisies, wide-eyed oxen, cats and horse-drawn sleigh rides sparkle with joy. Her paintings, in the words of one art gallery owner, contained, “No shadows at all. Everything is happy, gay, quick and lively.”

The debilitating effects of childhood rheumatoid arthritis increased as Lewis got older. It became harder and harder for her to walk and particularly to grasp her paintbrush. She was in constant and worsening pain. Lance Woolaver the author of a book and a play about Lewis discovered a mound of aspirin bottles buried in the backyard of her house after she died.

Lewis never sold her paintings for more than a few dollars each. Unable to afford canvasses she painted on anything around her, the shelves, walls, stairs and wood stove in her home and discarded pieces of wood in her yard. “As long as there’s a brush in front of me, I’m alright,” she said.

Lewis died in 1970 and was buried in a “pauper’s grave.” Maudie a biographical movie about her life was released in 2016 starring Sally Hawkins as Maud and Ethan Hawke as her husband. It has revived interest in her work. Some of her paintings now sell as high as $125,000.00 Her tiny one room cabin has been restored and fits entirely inside a room at the Art Gallery of Nova Scotia.

Did you know?

The 2021 Presidential inauguration was the most accessible ever. Joe Biden and Amanda Gorman have a speech disability. The pledge of allegiance by Amanda Hall was done in American Sign Language. The national anthem was sung by a disabled woman, Lady Gaga. In addition Justice Sotomayor has Type-1 Diabetes and there was a Deaf culture “Signs of Change” inauguration ball.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

The post Disability Digest #8 (March 1-8) first appeared on Al Etmanski.

Disability Digest #7 (February 22-29)

aletmanski — Mon, 22 Feb 2021 01:57:37 +0000

Dear Reader

People with disabilities have been major players throughout history. If you were to take away their contributions, you wouldn’t recognize the world. It would be a much different place and in much rougher shape, even though the history books have missed most of these achievements or have given credit to someone else.

This issue highlights artist Agnes Richter, comedian Stella Young, disability theorist Wolf Wolfensberger, best selling author and educator Parker Palmer and Paralympian Jessica Long. Please keep sending your comments and suggestions via this form. And if you like what you’re reading do spread the word.

Thanks – Al

This week in history ...

On February 24th Australian comedian, broadcaster and disability rights activist Stella Young was born (1982). Young became famous internationally for her TED Talk, I’m not your inspiration, thank you very much. It has been viewed more than three and half million times. She described images that showed a little girl with no hands drawing a picture with a pencil held in her mouth or a child running on carbon fibre prosthetic legs as inspiration porn. “I use the term porn deliberately because they objectify one group of people – disabled people – for the benefit of another group of people – non-disabled people,” she said. “The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, “Well, however bad my life is, it could be worse. I could be that person.” “

Young also took issue with the expression “The only disability in life is a bad attitude.” She said, “the reason that’s bullshit is because it’s just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp.” She ended her TED Talk by saying, “Disability doesn’t make you exceptional, but questioning what you think you know about it does.”

In her blog post Dancing like everyone’s watching Young wrote that she was never more aware of her body than when she was on the dance floor. “I dance as a political statement, because disabled bodies are inherently political, but I mostly dance for all the same reasons anyone else does: because it heals my spirit and fills me with joy.”

Stella Young died unexpectedly in 2014 at the age of 32. She was described by fellow comedian Wendy Harmer as a “hopeless yet cynical romantic”, a show-off, a dancer and “a lover of a fine pair of polkadot shoes.”

On February 27th 2011 disability theorist Wolf Wolfensberger died. From his base in Omaha Nebraska he spread the message that people with disabilities have the right to live a normal life like everybody else. He did this by popularizing the Scandinavian concept of “normalization.” His work revolutionized professional services and programs and led to the closure of institutions, segregated schools and other services.

Wolfensberger also emphasized the importance of people with intellectual, learning and developmental disabilities having valued social roles. “People who fill roles that are positively valued by others will be afforded by the latter the good things of life, but people who fill roles that are devalued by others will typically get badly treated by them,” he wrote.

In 2006 Exceptional Parent magazine named “the work of Dr. Wolf Wolfensberger on the Principles of Normalization…” as one of the 7 Wonders of the World of Disabilities along with Salk’s polio vaccine, braille, the wheelchair and the Americans with Disabilities Act.

On February 28th author, healer and educator Parker Palmer was born in Chicago (1939). Despite numerous best selling books, honorary doctorates and awards he regards his greatest accomplishment as surviving three serious bouts with clinical depression. “Nothing I’ve ever done has required more fortitude and persistence than surviving that assault on my selfhood and sense of meaning and purpose in life,” he said in an interview.

Palmer considers himself a wounded healer. “I was born baffled and have trusted my bafflement more than my certainties,” he said. He knows everyone is a mixed bag. He believes the most important words he can offer to anyone who is suffering are, “Welcome to the human race! Now you enter the company of those who have experienced some of the deepest things a human being can experience.”

Palmer founded the Centre for Courage and Renewal to close the gap between people’s personal and professional lives, and to help them integrate their inner and outer selves. He describes this as a move toward wholeness. “Wholeness does not mean perfection,” he cautions, “it means embracing brokenness as an integral part of life.”

On February 29 American Paralympic champion and swimmer Jessica Long was born (1992). She was adopted from a Siberian orphanage when she was 13 months old. Her lower legs were amputated a few months later due to a condition know as fibular hemimelia. Long has competed in 4 Paralympic Games winning 23 medals, 13 gold.

Long says swimming wasn’t an escape but an opportunity to deal with the things she wanted to escape from. In her book Unsinkable she wrote, “It helped me work through a lot of feelings and frustrations, because I had hours under water just to swim laps and think. I had the freedom to be alone with myself, completely unlimited by my circumstances or my body while doing what I loved…All my life I have had to fight to catch up with people. But not in the water. That’s the one place where everyone else is trying to keep up with me!”

Long was featured in a Super Bowl commercial in February 2021.

Did you know?

6000 pieces of art (paintings, drawings, sculptures, weavings, collages and installations) created by patients in mental institutions were collected by art historian Hans Prinzhorn between 1919 and 1921. One of those pieces was Agnes Richter’s jacket (pictured above) which also served as her diary. Richter was sent to a German psychiatric hospital in 1895 when she was 51. Her beautiful and elegant garment is constructed from brown wool, ripped-up hospital uniforms and coarse institutional linen and covered with intricate text stitched with coloured threads. Richter wore her work of art everyday. Some of the text is readable: “I am not big,” “I wish to read,” and “I plunge headlong into disaster.” Most of the text isn’t. It remains a mystery, embodying the person who made it – her loneliness, her drive to communicate – yet symbolizing the gulf between the medical explanation of psychiatric illness and those who experience it.

Gail Hornstein, in her book Agnes’s Jacket: A Psychologist’s search for the Meanings of Madness, compares Agnes’s secret inner world of words to a sacred text which we can’t make sense of on our own. She concludes that Agnes’s jacket embodies the core insight of the psychiatric survivor movement: “madness is more code than chemistry. If we want to understand it, we need translators – native speakers, not just brain scans.”

Agnes remained in the asylum for the rest of her life. While she died in 1918 her words live on. Her jacket is on display at the Prinzhorn Collection museum in Heidelberg.

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

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The post Disability Digest #7 (February 22-29) first appeared on Al Etmanski.

Disability Digest #6 (February 14-21)

aletmanski — Mon, 15 Feb 2021 04:34:35 +0000

Dear Reader

Disability is written out of history either by ignoring the contributions of persons with disability or by separating their disability from their contributions. This issue highlights artist Frida Kahlo, Phillipp Pozzo di Borgo whose autobiography A Second Wind was made into the popular film The Intouchables, teenage model sensation Aaron Philp, Lenín Moreno, President of Ecuador and George Klein inventor of the electric wheelchair. Please send your comments and suggestions via this form. And if you like what you’re reading do spread the word.

Thanks – Al

This week in history ...

On February 14th, Philippe Pozzo di Borgo was born (1951). Di Borgo a wealthy French businessman became paralyzed in a paragliding accident in 1993. His relationship with his ex-con caregiver was the focus of the most successful French movie ever made, The Intouchables. Di Borgio interviewed 90 people before choosing Abdel Sellou to be his personal attendant. He chose Sellou because, “He didn’t feel sorry for me. He was irreverent, cheeky and had an outrageous sense of humour.”

The exploits portrayed in the movie are largely true. Sellou would speed through the streets of Paris driving di Borgo’s Rolls Royce. On one occasion the police pulled them over. Sellou made up the excuse that they were speeding because di Borgo was having a seizure. Instead of a ticket, the police escorted them to the closest hospital.

Di Borgo described Sellou as his “guardian devil.” “I suddenly found I was enjoying life again,” he said. “He treated me like I needed to be treated in the tough times ahead, I needed to be back on track. Pity is the last thing you need. Pity is hopeless. Pity is what someone gives you because he is afraid to take care of you.”

Di Borgo attributes the success of The Intouchables to the fact that, “All people are dependent on each other. Handicapped people can play the role of the guardian because they remind us of the finiteness of life. We’re not always beautiful, athletic, immortal. We are – the older we become – fragile.”

On February 16 2016 Aaron Philip’s book “This Kid Can Fly: It’s About Ability (NOT Disability)” was published. At the time Philip was 14 years old. The book tells the story of her family immigrating to the Bronx from the island of Antigua to find better medical options for her. They lived for two years in a homeless shelter because of her expensive medical bills. She wrote the book, “to help people understand that just because you have to use a wheelchair to get around or have a physical disability, it doesn’t mean you can’t dream like other kids. You still have talents and desires. This chair that I use to get around doesn’t define me or what I do in life.”

Aaron (pronounced A-Ron) became a teen sensation a few years later becoming the first disabled, gender-nonconforming, trans woman of colour to land a magazine cover. Aaron has cerebral palsy and uses a wheelchair.

Her ambition to become a model was sparked by a magazine cover that pictured non-disabled model Kylie Jenner in a wheelchair. It made her determined to shift the image of disabled people from fetish to that of muse. “I’d like to show the world that muses can be Black, physically disabled, trans and accomplish big things as models if we’re given the attention and platform,” she said.

Philip points out that clothing matters to trans people in a way cisgender people take for granted. “The way we choose to dress, as trans people, directly affirms and presents our gender identities and expressions to the public in a way that is unique. It’s precious and beautiful to many of us,” she says.

On February 19th 2017 Lenín Moreno was elected President of Ecuador becoming, at the time, the world’s only head of state to use a wheelchair. Moreno’s disability is the result of being shot in the back in a 1998 robbery while he was buying bread with his wife. Throughout his political career he has been a staunch advocate for people with disabilities in Ecuador. He significantly increased the budget for disability income and supports, embedded the rights of disabled people in the constitution, installed curb cuts throughout the country and mandated companies to hire people with disabilities. Moreno was nominated for a Nobel Peace Prize for the transformation he brought about for people with disabilities in his country.

Moreno describes his disability as a blessing. “When you don’t have legs, you look down, ” he told an interviewer. He says people who walk tend to look upward. “That’s what I learned: that there’s another life, another existence, that there are other human beings that need a lot from us. For me, this was a novel experience that I thank God for.” Before being elected President of Ecuador Moreno served as the United Nations Special Envoy for Disability and Accessibly. “Solidarity – not as charity, but rather as recognition of others as equals – is the basic pillar for initiating social inclusion,” he wrote in 2012.

Did you know?

The electric wheelchair was invented by Canadian George Klein (pictured above) for the large number of veterans with spinal cord injuries returning from the Second World War. Klein’s prototype included the joystick, a tighter turning system and separate wheel drives which are still features of electric wheelchairs nowadays. The Klein Chair as it was then known was given patent free to the US Department of Veteran Affairs to encourage mass production. The strategy worked. Within a few years the electric wheelchair became available to civilians one of whom was Ed Roberts the father of the Independent Living movement. Roberts decided to use an electric wheelchair because he fell in love. “I learned how to drive a power wheelchair in one day. I was so motivated … She jumped onto my lap, and we drove off into the sunset —or to the closest motel,” Roberts said.

Klein is considered the most prolific Canadian inventor of the twentieth century. His other inventions include the Canadarm used by space shuttles, a microsurgical staple gun and aircraft skis for bush planes. His prototype wheelchair was kept at the Smithsonian in Washington for years, but returned to Canada in 2004 and is now part of the Canada Science and Technology Museum in Ottawa

Brought to you by the book The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

The post Disability Digest #6 (February 14-21) first appeared on Al Etmanski.

Disability Digest #5 (February 6-13)

aletmanski — Fri, 05 Feb 2021 16:26:38 +0000

Dear Reader

Disability is written out of history either by ignoring the contributions of persons with disability or by separating their disability from their contributions. This issue highlights artist Judith Snow, Mary MacDonald daughter of Canada’s first Prime Minister, jazz legend “Chick” Webb, a secret that playwright Arthur Miller carried to his grave, Abraham Lincoln and a Kama Sutra for disabled people. If you like what you’re reading do spread the word.

Thanks – Al

This week in history ...

On February 8th, 1869 Mary MacDonald was born. She is the only child of John A. MacDonald, Canada’s first Prime Minister and his second wife Agnes Bernard. Mary was diagnosed with hydrocephalus a condition that prevents the fluid that surrounds the brain from draining properly. Nowadays it is routinely fixed by inserting a shunt that allows the cerebral fluid to drain properly. Mary had limited use of her hands and used a wheelchair to move around. Her parents made their parlour wheelchair accessible to ensure she was included in the diplomatic and political gatherings they hosted. They also made sure she had access to the latest technology including a typewriter which she used to correspond with her father when he was on the road. She also typed her father’s speeches. After Sir John A. died, Mary and her mother settled in England. Mary died in 1933.

There is a children’s book about Mary titled Baboo, which was her father’s affectionate nickname for her. There is also a play Baboo: Missing in History. The play begins: “My name is Mary. Margaret, Mary, Theodora, Macdonald. I have a good life. My father was an important person, you might’ve heard of him.”

February 10th 1905 is the birthday of the “king of drums” William Henry “Chick” Webb. He acquired spinal tuberculosis as a child which limited his mobility and resulted in a curved spine and short stature. A doctor suggested he take up drumming to “loosen his bones.” He became one of the most highly regarded bandleaders and drummers of the new “swing” style. His hard driving drumming style and showmanship influenced Buddy Rich, Art Blakey and Gene Krupa. The Chick Webb Orchestra was the house band at the legendary Savoy Ballroom for years. Their theme song was “Stomping at the Savoy.”
They reached the height of their popularity with the novelty hit, “A-Tisket, A-Tasket” featuring a teenaged Ella Fitzgerald as vocalist. Webb died in 1939. His funeral procession included eighty cars. The church was unable to hold all the mourners.

On February 10th 2001 the playwright Arthur Miller died exposing a forty year old secret. Miller had a son Danny born in 1966 with Down syndrome. Miller sent him to live in an institution despite the objections of Danny’s mother, the photographer Inge Morath. Miller wrote him out of his life from then on. For example, Danny wasn’t mentioned in his autobiography Timebends or in his obituary.
Danny now lives in the community with a couple who are his second family. He has a job, is active in sports and is a vocal critic of institutions. No photo of him has ever been published. According to Jean Bowen, a Connecticut disability-rights advocate, the important part of the story is that Danny transcended his father’s denial: “He’s made a life for himself; he is deeply valued and very, very loved. What a loss for Arthur Miller that he couldn’t see how extraordinary his son is.”

Danny is now reunited with his sister Rebecca Miller. She credits her husband, the actor Daniel Day-Lewis, for breathing fresh life into her relationship with her brother.

February 12th, 1809 is the birthday of former US President Abraham Lincoln. He dealt with clinical depression all his life. In those days it was called, “melancholy.” As a young adult Lincoln often talked of suicide. Neighbours occasionally took him in for fear he might take his own life. His biographer Joshua Wolf Shenk claims Lincoln preserved his life by embracing both his darkness and light. Lincoln’s observation, “I am driven to my knees by the conviction that I have nowhere else to go,” serves as tribute to the vulnerable part of everyone’s nature.
In his second inaugural address, a month before the end of the Civil War, Lincoln appealed to a deeply divided nation using phrases such as “malice toward none” and “charity for all.”

Did you know?

There is a Kama Sutra for wheel chair users and their partners. It appears on the home page of Sexuality and Disability, a website that starts with the premise that “women who are disabled are sexual beings – just like other women.”

Brought to you by The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

The post Disability Digest #5 (February 6-13) first appeared on Al Etmanski.

Disability Digest #4 (January 30 – February 5)

aletmanski — Mon, 01 Feb 2021 03:40:08 +0000

Dear Reader

Disability is written out of history either by ignoring the contributions of persons with disability or by separating their disability from their contributions. This issue of the Disability Digest is still in beta mode as we strive for improvements. Please send your comments and suggestions via this form. And if you like what you’re reading do spread the word.

Thanks – Al

This week in history ...

On January 30 1882, future US President Franklin Delano Roosevelt (FDR) was born. At the age of 39 while vacationing in New Brunswick he fell ill and was diagnosed with polio. When he returned to politics few understood he was paralyzed below the waist and could not walk on his own. They thought he had recovered. That’s because Roosevelt stage managed his appearances for fear the designation “cripple”would end his political career. On his inauguration day he rolled to the stage in his wheelchair hidden by a barrier. He walked the last few steps supported by his aides. He had hand controls in his cars so he could be seen driving. And he banned anyone from taking pictures of him with his braces, wheelchair or canes. (The picture above is one of the few ever taken of him sitting in a wheelchair.)

Those who knew FDR believed his disability prepared him to lead the American people through the depression, World War 2 and the implementation of the New Deal. His Secretary of State Francis Perkins said FDR emerged from rehabilitation, “completely warm-hearted, with a new humility of spirit.” Roosevelt was much blunter. “Once you’ve spent two years trying to wiggle one toe, everything is in proportion,” he said.

Illustrating the the power of vulnerability Roosevelt observed, “Human kindness has never weakened the stamina or softened the fibre of a free people. A nation does not have to be cruel to be tough.”

On February 1st 1998 Australian author and sociologist Judy Singer introduced the term neurodiversity to the world. In her chapter, Why Can’t you be Normal for Once in Your Life? she wrote: “The neurologically different represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability. The rise of neurodiversity takes postmodern fragmentation one step further… even our most taken-for granted assumptions: that we all more or less see, feel, touch, hear, smell, and sort information, in more or less the same way, (unless visibly disabled) – are being dissolved.”

Journalist Steve Silberman described “Neurodiversity” as the rallying cry of the first new civil rights movement to take off in the 21st century.”

On February 2nd 2005 Jordan River Anderson died. Jordan was from Norway House, Cree Nation in the province of Manitoba. He was born with multiple disabilities and spent all five years of his short life in hospital instead of in a loving home because the Canadian and Manitoba governments couldn’t agree on who should pay for his support. In his memory the Canadian House of Commons passed Jordan’s Principle, a legal obligation to provide First Nations children with the support they need as soon as they need them. Jordan’s Principle requires that the government department of first contact pay for the services without delay or disruption. The paying government can then refer to an intergovernmental process to pursue repayment.

The First Nation’s Child and Family Caring Society led the campaign to honour Jordan’s memory. It’s Executive Director Cindy Blackstock said: “Jordan could not talk, yet people around the world heard his message. Jordan could not breathe on his own and yet he has given the breath of life to other children. Jordan could not walk but he has taken steps that governments are just now learning to follow.”

On February 5th 1951 the cartoonist John Callahan was born. At the peak of his popularity his cartoons appeared in more than two hundred newspapers. Callahan became a quadriplegic at the age of 21 when both he and the driver were on a drinking spree and crashed into a telephone pole. He credits his dark humour for bringing him out of his depression after the accident. His cartooning style was described as politically incorrect. His cartoons occasionally led to boycotts and protests. The cartoons targeting people with disabilities were among his most controversial although not to those with disabilities. ”My only compass for whether I’ve gone too far is the reaction I get from people in wheelchairs, or with hooks for hands,” said Callahan. “Like me, they are fed up with people who presume to speak for the disabled. All the pity and patronizing. That’s what is truly detestable.”

Callahan may have enjoyed pushing buttons but he was deeply religious. He described what he did as survivor humour. “All these things that happened to me in my life, they have deepened life for me,” he told a reporter. “I draw things that are real to me. That includes death, poverty and sickness, as well as love, profit and religion.” Callahan died on July 24, 2010.

Callahan’s memoir Don’t Worry, He Won’t Get Far on Foot was made into a movie of the same name starring Joaquin Phoenix.

Did you know?

Enlightenment reformers in the late 1700s embraced difference caused by disability and recognized its ability to create a richer, deeper and fuller world. They believed, for example, that blindness was a social asset and that people who were blind had unique and important talents. Jean-Jacques Rousseau thought that the ability to navigate without eyesight should be an important part of everyone’s education because it would heighten the other senses.

Brought to you by The Power of Disability: 10 Lessons for Surviving, Thriving & Changing the World.

The post Disability Digest #4 (January 30 – February 5) first appeared on Al Etmanski.

Disability Digest #3 (January 21 – 28 )

aletmanski — Mon, 25 Jan 2021 04:31:55 +0000

Dear Reader

Thanks for your feedback on the first two issues of this Digest. I confess I’m having trouble limiting the number of profiles as well as their length. Bear with me, there is so much to share.

Please send your suggestions via this form.

Thanks

This week in history ...

January 21st is the birthday of folk singer and fiddle sensation Gaelynn Lea (1984). She is classical trained and plays her violin like a cello holding her bow like a bass player. Lea’s international career took off after she was chosen the winner of NPR’s Tiny Desk Contest. Her voice is honey sweet floating above her fluid, fiddle playing. Lea uses a looping pedal to create her trademark hauntingly beautiful sound.

Lea uses an electric wheelchair to get around. She was born with osteogenesis imperfecta, also known as brittle bone disease. She refused operations that would have improved her mobility because she didn’t want to risk her musical career. “I actually chose not to walk and I’m happy,” she says.

Other musicians might demand red coloured Smarties, Lea expects a barrier free venue for herself and her audience. She says accessibility is the new punk rock. “For me, art can serve as a vessel to remind people we’re here, so that they think of us in other areas,” she says.

January 23rd 1939 is the birthday of Ed Roberts the father of the Independent Living Movement. He described independent living as a psychological idea as much as a physical idea. “We needed to change our attitudes about ourselves,” he said. “Be proud of who we were and what we are. And go out and change things for others and for ourselves.”

Roberts, a high school baseball star, contracted polio at the age of 14 and became paralyzed from the neck down. He was admitted to Berkeley in 1962 despite the objection of a Dean who said “We’ve tried cripples before and it didn’t work.” Roberts went on to become California’s Director of Rehabilitation – the same department that had refused to help him go to college. He also received a MacArthur genius grant, and created the World Institute on Disability, a think tank on disability policy. The secret of his success – helping other people. “Moving away from your own problems to help somebody else. That liberated me when I realized I could help others. It made me a lot freer to help myself,” he observed.

Roberts died of a heart attack in 1995, at the age of 56. In 2011 he was inducted into the California Hall of Fame in the same class as the Beach Boys. Today there is an Ed Roberts campus at Berkeley. Free Wheeling is a short, compelling video about Roberts and his philosophy of life.

January 23rd is also the birthday of Django Reinhardt, jazz guitarist and composer (1910). He is regarded as one of the greatest musicians of the twentieth century a musical innovator recognized as the first lead guitarist and guitar soloist. It was said of Reinhardt that the only reason God allowed Django to die is because his son needed guitar lessons.

Reinhardt narrowly escaped death in a 1928 fire that left his pinkie and ring fingers on his fretting hand fused together and curled inward. The injury gave his playing an identifiable sound that was ahead of its time harmonically.

He relearned the guitar playing solos with only the index and middle fingers and used the two injured fingers only for chord work, Reinhardt formed the legendary Paris-based Quintette du Hot Club de France in 1934 with violinist Stéphane Grappelli.

On January 27th, 1968 Christina Olsen died. Olsen was the inspiration for Christina’s World, by painter Andrew Wyeth. It has been on display at the Museum Of Modern Art in New York since 1949. Olsen was Wyeth’s neighbour. She was unable to walk because of a degenerative muscle disorder. She refused to use a wheelchair and chose to crawl around her house and yard. Wyeth wanted to portray Christina’s self sufficiency. “If in some small way I have been able in paint to make the viewer sense that her world may be limited physically but by no means spiritually, then I have achieved what I set out to do,” he said.

Wyeth painted many pictures of Olsen but Christina’s World was her favourite. When asked why she said, “…Andy put me where he knew I wanted to be. Now that I can’t be there anymore, all I do is think of that picture and I’m there.”

The weather beaten house in the painting was Christina’s home. Her grave lies at the bottom of the hill. Wyeth’s grave is there too. It was his final wish to be laid to rest near Christina.

Did you know?

Insulin was administered for the first time on January 23, 1922 to 14 year old Leonard Thompson. At the time Thomson weighed only 65 pounds and was dying in a Toronto hospital. Thomson had Type 1 diabetes an autoimmune disease and disability in which the pancreas does not produce insulin. The treatment worked and a year later insulin was commercially available. Insulin was discovered by Canadian doctors Frederick Banting and Charles Best. Banting sold the patent for $1.00 explaining that, “Insulin belongs to the world not to me.”

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The post Disability Digest #3 (January 21 – 28 ) first appeared on Al Etmanski.

Disability Digest #2 (January 9 – 15th, 2021)

aletmanski — Tue, 12 Jan 2021 04:32:36 +0000

Dear Reader

Thanks for the feedback on the first issue of this Digest.

This beta issue #2 incorporates your suggestions. The main change relates to formatting. We have switched to Mail Chimp for distribution so that the beautiful design by Lisa Joy Trick survives on whatever device you use.

Let me know what you think and I’ll keep trying to make this better.

Please send your suggestions via this form.

Thanks

This week in history ...

January 9th is the birthday of David Roche writer, humorist, and actor (1944). He is best known for his one-man show The Church of 80% Sincerity which is a church for recovering perfectionists. Roche has performed his show to standing ovations around the world including the White House, and Kennedy Centre. And has been turned into a best selling book.

Roche often begins his performances by asking audiences to ask him, “What happened to your face?” To which he replies “I thought you’d never ask,” explaining that his facial disfigurement is the result of his being born with a rare noncancerous tumor on the left side of his face. He described it as a combination of veins gone wild, followed by radiation burns and surgeries. “And you’re worried about having a bad hair day,” he says. “I’m having a bad face day.”

Roche is tired of Hollywood using people with facial differences to symbolize evil. “There is no cinematic metaphor that is more trite and shallow,” he wrote.

His latest project is Love at Second Sight, a film he produced with his wife Marlena Blavin to help young people deal with the challenges of appearance and acceptability. Roche said, “My face is unique but my experiences are wholly human. My face is a gift because I’ve been forced to find my inner beauty. That is a universal human need.”

January 12 is the birthday of Australian comedian Hannah Gadsby. She became an internet sensation when a video of her live performance Nanette was streamed on Netflix. In Nanette Gadsby deconstructs stand up comedy and declares she will no longer use self deprecating humour because it reinforces the insults people who have been marginalized experience.

Gadsby’s followup show Douglas also on Netflix deals with her diagnosis of autism and the misogyny inherent in classical art. Gadsby has been described as a comedy game changer. She begins Douglas by alerting the audience that what she intends to say will disturb them. She then leads them laughing all the way to a tough reckoning that, despite her warning, still manages to surprise.

Douglas has been nominated for two Emmys. Gadsby is friends with British actor Emma Thompson who describes her comedy as Promethean. Gadsby says in Douglas, “I’m not here to collect your pity, I’m here to disrupt your confidence.”

On January 13 2010, the American R&B singer Teddy Pendergrass died from respiratory failure. He was the lead vocalist on the Melvin and the Blue Notes hit If You Don’t Know Me by Now. He was the first male African American solo artist to record five consecutive platinum albums. He also became the first wheelchair user in mainstream music after sustaining a spinal cord injury in a car crash. He returned to live performing in 1985 at Live Aid.

Pendergrass didn’t want sympathy from his fans. “My purpose is that people don’t see me as a man in a wheelchair, that you get past the wheelchair and see the show. Come out and enjoy yourself, have a good time,” he said.

Pendergrass published his autobiography, Truly Blessed, in 1998. “There’s a lot that I need to prove as a person with a disability,” Pendergrass wrote. “Having a full productive life is what I advocate at all costs.”

On January 15th 2012 actor and Game of Thrones star Peter Dinklage won a Golden Globe. Dinklage, who is one of the highest paid actors on tv, used his acceptance speech to pay tribute to British actor Martin Henderson a person with dwarfism from Somerset, England. Henderson was badly injured after being picked up and thrown by a drunken rugby fan in a bar. He subsequently died. Dinklagee knew that people wouldn’t know Henderson’s name, so he asked them to Google it.

Dinklage, who is also a person of short stature, refused to be treated as a hero for speaking out. “They’ve made it more romantic than it actually was,” he said. “I just wanted to go, ‘This is screwed up.’ Dwarves are still the butt of jokes. It’s one of the last bastions of acceptable prejudice. Not just by people who’ve had too much to drink in England and want to throw a person. But by media, everything.”

Did you know?

Audiobooks began as talking books for soldiers who became blind during World War one. Even though Thomas Edison invented the phonograph to record the spoken work, talking books never really took off until Dylan Thomas recorded A Child’s Christmas in Wales before it was published. Today audio books are in the midst of a boom that coincides with the rise of podcasts.

The Power of Disability Digest – correcting what history has overlooked.

The post Disability Digest #2 (January 9 – 15th, 2021) first appeared on Al Etmanski.

Disability digest #1

aletmanski — Sun, 03 Jan 2021 22:51:30 +0000

Dear Reader

This is a beta version of something I’ve been wanting to do for a long time, create a digest that illustrates the remarkable contributions of people with disabilities. There wasn’t room in my new book, The Power of Disability for all the stories I came across. This digest is the next best thing.

I’d like each Digest to introduce you to works of art, stories about interesting people, notable dates and Did-you-know facts.

I plan to make the Digest a regular feature but first I’d like your feedback. What do you think about the format and content? Is it too long, too short or just about right? Would you like more pictures? How often would you like to receive it? I was thinking weekly. Is that about right or would you like it more or less often?

Please send your suggestions via this form.

Thanks

This week in history ...

January 2nd is the birthday of Jean Little an award winning writer of children’s literature (1932). Little was born in Taiwan where her parents were Canadian medical missionaries. They moved back to Canada when she was seven.

As a child Little was constantly told to go and wash her nose because it was smudged with print. She was born with limited eyesight and had to hold the book right up to her face.

She wrote her first book, Mine for Keeps because she was tired of reading books to her students where children with disabilities can only be happy if they recover from their disability. For example Clara in Heidi or Colin in The Secret Garden. By contrast, Little’s books showed children thriving with their disabilities and portrayed as valuable members of their community, and who gave as much as they received. “I try to be realistic and not dodge things that I think are really important to children,” she said.

Little studied literature at University of Toronto under Northrup Frye . She wrote more than sixty books for young people. One of her most popular and most autobiographical is From Anna, the story of Anna Solden a child who is blind who moves from Germany to Canada with her family on the eve of Hitler’s rise to power in Germany.

When she was in her mid-sixties, Jean and her sister Pat de Vries, began raising her great-niece and nephew whose mother had been murdered by a serial killer. For years she hosted large family gatherings at her cottage in Muskoka – which she named Gilead and which now belongs to children’s storyteller Robert Munsch .

Little continued to write using a voice activated computer until her death on April 6, 2020. When asked why she wrote for children. She said, “Because I get to be ten.”

On January 3rd 1938 the March of Dimes was launched by President Franklin Delano Roosevelt. Which is the reason why his image is still on the American dime. FDR encouraged people to mail their dimes to the White House to help find a cure for childhood polio. Dimes came by the truckload – 2,680,000 dimes or $268,000 in the first month. The name “March of Dimes” was coined by entertainer Eddie Cantor based on the song, Brother can you spare a dime? The money funded the development of Jonas Salk’s polio vaccine.

FDR was diagnosed with polio in 1921. His wife Eleanor Roosevelt said polio had made her husband more sensitive to the pain of others and determined to do something about it.

January 3 is also the birthday of Greta Thunberg (2003). She began her school strike for the planet in August 2018, skipping school and sitting outside the Swedish Parliament every Friday on her own. By the end of the year, she was named one of the most influential teenagers in the world. Thunberg said, “We live in a strange world where children must sacrifice their own education in order to protest against the destruction of their future.”

Thunberg has been criticized for her appearance and mocked for her speaking style. In response she wrote, “When haters go after your looks and differences, it means they have nowhere left to go. And then you know you’re winning!” She added, ”I have Asperger’s syndrome and that means I’m sometimes a bit different from the norm. And — given the right circumstances — being different is a superpower.”

Thunberg’s father says his daughter has dealt with the negativity “incredibly well” and that, “She dances around, she laughs a lot, we have a lot of fun – and she’s in a very good place.”

January 4th is the birthday (1883) of Charles Sherwood Stratton better known by his stage name, General Tom Thumb. He was a talented actor, singer, dancer and comedian. One of the world’s first superstars, his popularity surpassed those of any other celebrity of his day. He began a three year world tour in 1863 performing in more than 580 cities. Stratton became wealthy as a result of his partnership with PT Barnum, the legendary showman. Despite criticism that Barnum was exploiting him, Stratton was in full control of his career. When Barnum got into financial difficulty it was Stratton who bailed him out.

Mat Fraser, a British musician, actor and curator of the tv series Crip Tales thinks there are clear reasons why Stratton was continually drawn to the stage. “Here’s the thing that non-disabled people tend to forget: you do your show and a thousand people think you’re fantastic, you walk out the stage door and some fella’s staring at you on the street again. BANG! You’re back there, you’re always back there. Of course you want to be back on the stage, it’s a delicious power that I wouldn’t know what to do without.”

January 4th is also the birthday of French educator, musician and inventor Louis Braille (1809). He is best known for inventing a tactile system that enabled people who are blind to read and write. Braille lost the sight of one eye when he was three as the result of an accident. Two years later he lost the sight of his other eye.

Braille’s ingenuity began when he was 15. He created braille by simplifying “night writing” a method French soldiers used to communicate quietly when it was dark. He published his first book in braille in 1829.

Braille is not a language but a code enabling people to read and write in their own language. It is still in use today although with the advent of audio books, smart phones and text-to-voice readers usage is 10 percent of what it was a century ago.

The Power of Disability Digest – correcting what history has overlooked.

The post Disability digest #1 first appeared on Al Etmanski.

Life comes from life

aletmanski — Wed, 23 Dec 2020 19:06:42 +0000

Life comes from life.

It comes from life in every shape, size, and background. Complex lives. Messy lives. Struggling lives. Determined lives. Funny lives. Mysterious lives. Sensual lives. Beautiful lives. Sacred lives.

It doesn’t come from machines, technology, techniques, and touchups.

Nor from artificial intelligence and artificial limbs. Nor from quick fixes and miracle cures. Nor from positive mind-sets and exceptional heroes. These can be useful, but not as much as we have been seduced to believe. And certainly not in isolation.

A thriving life is accompanied by a nurturing environment that includes family and friends who care about you and a society that cares about you too—cares enough to allocate resources, provide opportunities, and expand justice so that you can live life to the fullest.

There is no such thing as “their” world and the “rest of us” world. And we can’t afford for there to be one. There is only one world. If we are going to preserve it, we have to make it a place where people are enlarged, not threatened, by difference. Where as many people as possible are moving in the same direction. Where we transcend our partisan and ideological beliefs and recognize, indeed rely on, what we have in common: our dependence on each other.

Of all the conditions that bind us together, the experience of vulnerability is the most universal and therefore the most unifying. It’s not just the fact that it touches everyone on the planet. It’s that it offers us an alternative to the lone-actor, epic-hero story that abounds.

It gives us a story that celebrates our deep connections to each other and to the earth—a story that reminds us that none of us get where we are going on our own and that success doesn’t come from rising above but by rising with.

We are not separate. Although we are different, we don’t have to be alone. We all breathe life, live life, love life, give life, leave life. And we inhabit this fragile, beautiful, and living planet together.

The power of vulnerability is the power of that life.

– excerpted from The Power of Disability with thanks to the “Socrates of Quebec” Jacques Dufresne.

One more thing. And I hate that I have to do this.

The poverty experienced by disabled people during this pandemic has expanded and deepened. That includes Madeline (not her real name) one of the most talented and vivacious people I’ve met this year. You can read more about her in this news article. On a good day Madeline’s pain is never less than eight out of ten. A bunch of us are working to convince government to cover the full cost of her treatment. The gap is $50,000 a year.

In the meantime we have set up a Go Fund Me campaign. Up until now Madeline has been afraid and embarrassed to ask for help. But she has used up all her savings and maxed out on debt. She has applied for Medical Aid in Dying. Not because she wants to die. But because she can’t afford to keep herself alive on her own. That’s where we come in.

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The Power of Disability

aletmanski — Fri, 11 Dec 2020 03:55:30 +0000

My new book The Power of Disability was published in February just before the pandemic hit. Momentum had started, reviews were positive, and book concerts featuring local artists with disability were lined up.

Covid put all that on hold. Book sales in general nose dived carrying The Power of Disability with it.

The good news is that the book industry has recovered. Authors I admire like Christa Couture, Seth Klein and Harvey McKinnon have made a successful shift to virtual promotion.

And I’m joining them with a friendly reminder that The Power of Disability would make a great gift for family, friends or for the people in your classroom, board room, book group, virtual conference, training program, Queen’s Gambit club …

There’s been some nice magazine feedback about the book:

The folks at Porchlight books created a manifesto out of my book called The Disability Advantage on Dec 3rd, The International Day of Disabled People.
Forbes magazine columnist Jonathan Kaufman suggested The Power of Disability is a must read for those wanted to end polarization in US politics.
Business Insider listed The Power of Disability as one of 12 books for managers to read if they want to build diverse and happy teams.

And nice reviews from readers:

Just finished your book – I’ve been reading it slowly – like an aperitif that you roll over in your mouth to let the experience sink in. PP

There’s so much love in each sentence. KR

The collection is so very impressive, and such a powerful rebuttal of the narrative of lives “not worth living”. An immensely important contribution. CF

Thank you for writing a book that is changing our son’s view of himself. Not even through the first chapter and already he is deeply connecting to the stories he is hearing. CI

When I understood that my son has what others called a disability, fun flew out the window as professionals talked to me in serious tones. Today, they can just give a copy of The Power of Disability to parents…. But whilst at it, give it also to politicians, policy analysts, decision makers, leaders and community. AJ

The Power of Disability is available wherever books are sold. Click here for all your choices.

The post The Power of Disability first appeared on Al Etmanski.

Learning from the Danes – building back better (fifth in a series)

aletmanski — Tue, 10 Nov 2020 00:17:50 +0000

Monumental change requires a mindset that is wildly different from the status quo. Otherwise the momentum of an outdated approach will ensnare us.

This mindset influences what we aspire to, the values we hold dear, the way we conduct ourselves and treat others. It’s more than an outlook. It’s a discipline requiring gentle tending and constant nourishment. And it has the power to change habits, attitudes, and beliefs.

I first encountered the power of mindset to change lives when I was introduced to the principles of normalization shortly after my daughter Liz was born. Normalization asserts that the daily lives of people with disabilities should be as normal as those who do not have a disability. Normal rhythms, routines, experiences, expectations, choices and lifestyle.

Normalization was legislated in Denmark in 1959 thanks to Danish resistance hero Eric Bank-Mikkelsen. It was ground breaking and breath taking. It resisted the prevailing belief that people with disabilities should be segregated and institutionalized. It argued in favour of equal rights and living in the community.

Fast forward almost three decades to Liz’s birth. By then the principles of normalization had been translated into English and had migrated to North America. Where it influenced John F. Kennedy who established the President’s Committee for People with Intellectual Disabilities. (Kennedy’s sister Rosemary was diagnosed with an intellectual disability.) From there it spread throughout North America and beyond.

Where it eventually found me.

Normalization gave Liz’s mother and me a frame of reference to counteract the dismal future suggested by doctors and outlined in textbooks. It rocked my world. And enabled Liz to confidently rock hers. Since then she has broken all the rules in a rule book she never bothered to read.

One life among millions changed forever.

I recently joined fellow Canadian Diane Roussin of the Winnipeg Boldness Project and other thoughtful speakers from around the world at a global conference hosted by the Danes. Its called “Step into System Innovation.” It was billed as a festival of ideas and insights. And it was.

If you want to rock the world a little bit more click here for free access to all the recorded sessions.

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Nothing About Us Without Us – Building back better (fourth in a series)

aletmanski — Mon, 02 Nov 2020 01:12:46 +0000

The recent Throne Speech promised a Canadian Disability Benefit. This makes Canada the first country in the world to commit to ending poverty for its disabled citizens. It’s an historic investment in their financial well being. If properly designed the proposed Benefit will have the same impact as the Guaranteed Income Supplement, which ended poverty for seniors when it was introduced. The disability community is uniting to make sure the Benefit is fair and inclusive. Their campaign is worth following for those interested in learning how to build back a better long term care system, secure Universal Basic Income and resolve other social and environmental challenges.

My co-author on this post is Rabia Khedr, a leading disability advocate and human rights champion.

The phrase “Nothing about us without us” has its origins in political movements going back to Poland in the 1500s. It’s been a rallying cry for democracy ever since. Think, for example, of the slogan “no taxation without representation.” In the 1990s “Nothing about us…” was resurrected by disability activists who were tired of being excluded from decisions that affected them. It has fueled the disability movement ever since. And been adopted by hospital patients, Indigenous people, and people with dementia.

There’s a catch though. No one likes to be included as a favour or token gesture. That type of inclusion is fragile, easily eroded and far too dependent on the grudging goodwill and changing priorities of people in power. Too often “Nothing about us…” is used by the status quo to preserve the status quo.

Increased representation in decision making is always claimed. Never granted. Power is a habit. And those that have it don’t like giving it up whether they are conscious of their resistance or not.

Covid has knocked the traditional policy-making process off balance. It has exposed flaws in our institutions so fundamental that nothing short of transformational change will do.

Which means we must transform how we make change.

Instead of advocating for a place at someone else’s table we can create our own. We can welcome diverse voices and allies, settle our disagreements, create the agenda, and invite government officials to join with us.

In terms of the Canadian Disability Benefit, “Nothing about us without us” means:

Taking overall responsibility for getting the job done
Preparing our diverse movement for success
Designing the benefit in equal partnership with the federal government
Achieving consensus on key features and resolving any contentious issues among ourselves
Enlisting our artists to create language, symbols, and images that touch hearts and open minds
Galvanizing public support by aligning with powerful groups, doing our own polling, and recruiting celebrities and high profile champions
Dealing directly with Ministers, Senators, Premiers and the Prime Minister’s Office (PMO)
Ensuring all party, non-partisan support at the national, provincial and territorial level
Combining our storytellers, thought leaders and their followers to create a Disability Media that rivals mainstream outlets
Securing independent funds to mobilize our moral, social, cultural, artistic and economic power.

Let’s fashion our own liberation story. We have more power than we realize so let’s claim it. And not let the boundaries of that power be defined by others.

NOTE: To learn more sign up for our four-part webinar series “Building Momentum for the Canadian Disability Benefit” beginning November 5th. We’ve assembled four world class experts to learn from, Peter Macleod, Jutta Treviranus, Delyse Sylvester and Adam Kahane.

Rabia Khedr is co-hosting this series with Jonathan Marchand who lived in a makeshift cage outside the Quebec National Assembly in August to protest being forced to live in a long term care facility.

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In the beginning was a caring relationship – building back better (third in a series)

aletmanski — Fri, 18 Sep 2020 03:15:30 +0000

With apologies to the gospel in the beginning wasn’t the word, it was a caring relationship.

In 2001 the 530,000 year old partial skeleton of a 12 year old girl was discovered in Spain. The shape of her skull indicated to scientists that she had a disability that limited her mobility. The extent of her disability doesn’t matter. What matters is that she survived because her family and her hunter-gatherer community took care. Her bones speak of love, tenderness, compassion and belonging. A story that runs counter to the assertion that we are selfish creatures and that only the fittest survive.

From the beginning people took care of each other. They supported, protected, comforted, adapted, invented, and created for each other.

The basic ingredient of society is a caring relationship. Nothing is possible without it. Everything is possible with it.

My wife Vickie Cammack describes a caring relationship as love in action. I can’t think of anyone who hasn’t been birthed, nurtured, buffeted and dependent on such love. Behind every business tycoon, politican, artist, preacher, athlete, record setter, public servant, first responder, community organizer, and tech wizard is a caring relationship.

The experience of receiving and giving caring is humanity’s classroom. It has been given to us to learn what it means to be human.

A caring relationship teaches us that:

Vulnerability is a universal condition
We are interdependent not independent
Asking for help is a gift that shimmers in all directions
Everyone grows, learns and experiences joy throughout their life regardless of their condition
Being whole is not the same as being perfect
Freedom does not exist without obligation
Loving the world as it is, with its suffering and desecration, helps us understand where the possible remains
The good of others involves sacrifice, inconvenience and letting go
Adversity turns into creativity when we love
The ordinary and the sacred are two sides of the same coin.

Want to reform long term care care, end poverty, tackle climate change, stop corporate greed, produce authentic leaders, strengthen democracy, and renegotiate the social contract?

Then nurture a culture that celebrates caring relationships.

(With appreciation to Anne Basting, Bonnie Sherr Klein, Donna Thomson, Eva Kittay, Hannah Arendt, Parker Palmer, Vickie Cammack, and the Ashoka Roundtable on Aging led by Chris Cusano and Hae-Young Lee)

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Renegotiating the social contract – building back better (second in a series)

aletmanski — Fri, 11 Sep 2020 03:30:40 +0000

The pandemic has revealed the need to renegotiate the social contract that exists between civil society and government. For example, we have a long term care system that can’t keep people alive; a welfare system that keeps people poor; and a disability system that keeps people from being included.

The social contract is a political expression of society’s shared values. It identifies the role citizens want their government to play in creating a fairer, safer, more just, equitable, accessible and inclusive society. An early example is the commitment at Confederation to free public education despite Canada being in debt, without an army and worried about American military expansion. Other examples include universal health care and the income support system.

Although government plays a critical role in redistributing resources, investing in social innovation, setting standards and removing barriers to genuine inclusion the social contract was never meant to give it sole responsibility for levelling the playing field. Nor can it. For example governments can legislate to make buildings physically accessible. However creating a welcoming atmosphere once people are inside depends on the mindset and attitudes of those who work, shop, learn and play there.

The social contract is a balancing act. Too much government intervention undermines natural caring and increases dependency on paid, professional intervention. Too little and individuals, families and communities are left on their own to deal with dangerous attitudes, changing economic realities and life circumstances that are not their fault and beyond their control.

The social contract isn’t one document. It’s a combination of laws, policies and regulations scattered over time among various departments at multiple levels of government. It has grown higgledy-piggledy with one-off reforms. It’s no longer rational or coordinated and often acts at cross purposes. It hasn’t kept pace with changing technology, the growth of artificial intelligence, the concentration of wealth and the climate crisis. And it remains slow to respond to the needs of excluded groups of people.

It’s time for a major overhaul.

Renegotiating the social contract starts with an exercise of the imagination. The imaginative question isn’t, ‘What needs fixing?’ but ‘What kind of caring society do we want?’

The answer will involve:

Recognizing the natural ingenuity and caring of individuals, families, neighbours and community
Privileging the solutions of those whose lives are negatively impacted by social injustice and economic inequality
Getting rid of false assumptions that perpetuate exclusion, injustice and inequity
Prioritizing public values of solidarity, compassion and fairness over private sector market values
Taking stock of the gaps, overlaps, and competition among existing programs
Re-purposing government institutions to serve as a bridge between formal and community supports
Articulating a new relationship between civil society and government that goes well beyond volunteerism and charity.

Renegotiating the social contract will take a mighty collective effort by citizens in an equal partnership with government. In other words not the usual government-led advisory process but a combination of citizen assemblies, reference panels, civic lotteries , e-democracy and other forms of deliberative democracy.

The pandemic has revealed that a caring society is a do-it-together, not a do-it yourself, project. And that government and civil society in partnership makes it so.

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The world needs more community organizers – building back better (first in a series)

aletmanski — Thu, 20 Aug 2020 03:33:47 +0000

The phrase “build back better” is being used to capture the determination and desire of politicians and activists alike to come out of the pandemic with a more just, equitable, accessible and inclusive society. The phrase, adapted from a 2015 UN conference on disaster relief, has surfaced in the Task Force for a Resilient Recovery, the campaign for a green economy, Women in Global Health Canada, and the Biden-Harris team.

As important as these dreams of systems change and transformation are, it will take more than a transition strategy, proven innovations, vigorous advocacy, smart policy work and election victory. It will take all these plus coordinated grass roots community action.

Community organizers can help.

They specialize in rallying the collective power and talents of citizens to address societal challenges. They shine a light on everyday citizen ingenuity. They know from experience that so called ordinary people have the creative capacity to address poverty, reform of long term care, exclusion, the climate threat and other tough problems.

Community organizers help people to identify their shared interests and to define and resolve challenges on their terms. They are wary of advisory processes that isolate people from their constituencies. Instead they nurture community based decision making and sort out community consensus rather than rely on government to arbitrate.

They build solidarity stitching together disconnected efforts of innovators, artists, activists, movers, shakers, theoreticians and people affected by the issue(s). One of the things I admire about the new generation of community organizers is their ability to reconcile the intersection between racism, disability and affordable housing, good health, jobs and basic income.

A current example of the power of grass roots community organizers is the non-partisan #CripTheVote. It was created in advance of the 2016 US election to unite and amplify the voice of Americans with disabilities who, similar to Canada, represent 20% of the population. #CripTheVote played a major role in opposing Trump’s attempt to slash Medicaid coverage and has become a political force in this fall’s American election. Most Presidential candidates for the Democratic Party nomination assigned staff to monitor #CripTheVote. They workshopped their platforms with disability justice advocates. The result, Biden has a detailed disability platform, a separate plan to support disabled Americans during the pandemic and a national disability engagement director. His running mate Harris has a plan to provide Mental Health Care on Demand.

Community organizers help to:
• unify and strengthen movements
• shift the boundaries of what is socially acceptable
• broaden public understanding and support
• encourage political boldness.

In that sense community organizers are true democrats enabling citizens to make their governments more responsive and responsible.

In that sense “build back better” could use a bunch of community organizers on the team.

Notes:
1) Speaking of the US election, I was just about to push publish on this post when I received this Forbes article by Jonathan Kaufman who cites my new book The Power of Disability to argue that it is the disability community who will help America to re-imagine its future.

2) Cormac Russsell is my colleague at the Asset Based Community Development network. His new book Rekindling Democracy is a guide for community organizers and other democrats.

3) I wrote the following newspaper articles with community organizers in mind: What kind of caring society do we want, and It’s time to unify the disability movement, co-written with Kathleen O’Grady.

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Forget Your Perfect Offering

aletmanski — Thu, 07 May 2020 23:57:38 +0000

First a reminder that our Power of Disability Concert takes place this Saturday May 9th at 7:00 eastern. Entertainers include the lead clown for Cirque du Soleil, a comedian with White House experience, award winning singers, storytellers, hip hop artists all with soaring voices and universal insights. The LOL (Labour of Love) team who volunteered this together have designed an exquisite, superbly paced and relaxed offering that will delight you, and your family. It’s as close to a perfect offering as you will experience. There are still tickets left. Get them here.
Note all the ticket proceeds will be used to support physical isolated folks stay connected. If you know someone who needs a free ticket contact: hello at plan dot ca on their behalf.

My friends at Common Good Collective are circulating a blog post I wrote three years ago. I’m glad they are because it highlights two approaches to recovery after corona – certainty and confidence.

Certainty wants us to move toward strategy, policy and programs as quickly as possible.

Confidence wants us to wait and make sense of what just happened. It trusts our ability to do so. While the virus curve is flattening the learning curve is spiking. Paying attention to those learnings enlightens future actions.

One learning is the centrality of relationships and human connections. What we missed about them. What they meant to us. And what we can do to make sure they are integrated into everything we do going forward. Including the redesign of our social safety net and the renegotiation of our social contract.

I can’t imagine any of our desires for justice and equity happening without a commitment to the ties that bind us together. Not to create a ‘super organization’ similar to the collective impact approach. But something citizen based. Something that links people in networks, facebook groups, neighbourhood organizations, and grass roots associations. That trusts their imagination, decision making and problem solving. That solidifes what the pandemic is teaching us – the primacy of front-line people and caring citizens to get things done.

I worry policy makers and funders will drive toward programmatic goals too soon. Such certainty without a serious reappraisal of what has changed, and can change if we come together is foolhardy. And leads us right back to relying on a few chosen people trying to make change on our behalf. Regardless of how talented and articulate they are.

The Common Good folks described the post I wrote as a poem. I’m good with that!

Forget Your Perfect Offering

Forget your perfect offering, advised Leonard Cohen.
There will always be another shiny concept or tool so much better than the one you currently use.
And consultants, who describe a perfect world within reach should you decide to hire them.
And fundraisers, who already have money in the bag ready to be released the moment they are retained.
And researchers, who can describe your challenge in learned ways.
And people smarter than you, who will knock you off balance.
But hopefully not for long.
Be careful what you are advised to transplant. It must be able to grow in your community, in your soil.
Trust your natural rhythms.
Pay attention to your people.
Have confidence in your experiences.
Your association with frailty, vulnerability and imperfection will serve you better than an association with those who peddle certainty.
Certainty breeds fear and hesitation. Fear of uncertainty, of not getting it right.
Certainty kills spontaneity.
It is a prison the light can’t get into.
The antidote to certainty is confidence.
Confidence that we are enough. Confidence that we have enough.

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The Power of Disability Concert

aletmanski — Fri, 01 May 2020 06:02:20 +0000

Update: The live version of this concert was hosted on May 9th but you can watch the full concert recording anytime online.

The Power of Disability reminds us of what we have in common – the power to create a good life for ourselves and for others no matter what the world has in store for us.
– Michael J. Fox

The quote above is on the cover of my new book The Power of Disability, which celebrates the artistic, political, literary, scientific and other achievements of people with disabilities. Instead of a book launch, I was planning a series of concerts to highlight local artists, entertainers and performers with disabilities. Then the corona virus hit. I cancelled those events and adapted the concept to our current reality.
Now I’m thrilled to invite you to an intimate, online concert. I want to celebrate the power of disability through music, storytelling, and humour. And bring some joy and laughter into your life.

I’d love for you to join us from the comfort of your home.
When: Saturday, May 9th at 4 – 5:15 pm PDT (7:00- 8:15 EDT)
Where: Zoom! Tickets are $6 and available through Side Door

Performers include:

Amy Amantea (Actor)
Christa Couture (Musician, Writer, Broadcaster)
Maxim Fomitchev (Mime, Clown & Physical Comedian)
Sarah Jickling (Singer/Songwriter)
Greg ’77 Spokes’ Labine (Singer/Songwriter)
Niall McNeil and Marcus Youssef (Theatre Artists)
David Roche (Humorist) and
Kristina Shelden (Singer/Songwriter).

There will be surprises. And a recipe to make the best popcorn you’ve ever had.

Our host will be actor and playwright James Sanders.

Ticket proceeds go to Planned Lifetime Advocacy Network. They’ve been helping Canadians stay socially connected and emotionally supported for thirty years. And have ramped up their work during this virus.
I look forward to seeing you on May 9th to celebrate the #powerofdisability.

PS – check the facebook event page for more details.

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The Abundant Sense of a Community Organizer

aletmanski — Fri, 24 Apr 2020 05:59:39 +0000

There is a group of people whose sense of what we can do together is abundant. They are known as community organizers. Their specialty is connecting people who want to make the world more just, equal, accessible and inclusive. They are active during the pandemic. They are essential for the recovery.

Community organizers unify. They draw the extraordinary out of just about everyone.

Community organizing is an aptitude as old as the hills. It’s never been a profession. It’s hard to teach but it’s in everyone’s nature.

Community organizers prefer the background. But the fruits of their labour are everywhere. They are the people behind the abolition of slavery (Thomas Clarkson); hospice care (Cicely Saunders); civil rights (Martin Luther King Jr.) successive waves of feminism (Adelaide Hoodless, Betty Friedan); safe injection sites (Ann Livingston); seed reclamation (Vandana Shiva); Idle No More (Nina Wilson, Sheelah McLean, Sylvia McAdam, Jessica Gordon, Pamela Palmater); and climate justice (Jason Mogus).

I profile several community organizers in my new book The Power of Disability:

Barb Goode, people first organizer, plain language champion and successful campaigner to end the sterilization of women and men with developmental disabilities.
Geoff McMurchy who postponed his artistic career to mobilize against physical barriers and obstacles.
Alice Wong the accidental activist and force behind Crip the Vote. “You don’t have to march to be in the resistance,” she says.
DJ Savarese who is determined to emancipate 750,000 North Americans with autism who do not speak. “Inclusion shouldn’t be a lottery,” he says.

The list of these mostly unknown legends is endless.

Speaking of community organizers, John McKnight and Peter Block are two of the best. John has influenced generations of community organizers including Barrack Obama. Peter’s book Community: The Structure of Belonging is a bible to community organizers. John and Peter host a regular webinar based on Abundant Community the book they wrote together. They’ve invited me to have an hour conversation with them. It’s this Monday April 27th at 1:00 eastern. I’m gobsmacked to use a high falutin community organizer’s term. Register here.

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If Terror was Temperature

aletmanski — Tue, 14 Apr 2020 22:03:37 +0000

During the Easter weekend Carla Qualtrough the federal Minister of Employment and Disability Inclusion created a Covid-19 Disability Advisory group. Here is why it matters.

It’s been a tough four weeks for the disability community.

Over and above everyone’s general anxiety and disorientation there are everyday reminders that fairness and equity plays out differently for disabled people. As it has for seniors in care facilities.

Broken glass is everywhere. No emergency health plans, no data sharing, no transparency about triage. Shortages of protective equipment and specialized devices. Unavailability of mental health supports.

The devil isn’t just in the details, it’s in the architecture of our institutional response.

It’s not that the natural courage, creativity and kindness of the Canadian disability community isn’t flourishing. It is. People are joining forces, problem solving, proposing ideas, and saving lives. They’ve become by default the first responders.

Still it’s hard to stay healthy and do your best work when you’re scared.

If terror was temperature. And uncertainty a heat wave.

The lakes and rivers of Canada would have gone dry by now.

That fear is expressed by prominent individuals, front line advocates, families, service providers, emergency docs, ethicists, and government allies. People not inclined to hyperbole, panic or to overreacting.

What do I do?

Says a successful artist who uses a wheelchair. “I can’t replace one of my attendants who’s taken ill. And I’m running out of sterile supplies.”
Says a mother as skilled at caring for her daughter’s complex medical conditions as any nurse or doctor. “I’d like to be gowned up. Instead I can’t even see her.”
Says a young deaf man who lives alone and depends on technology to communicate. “My equipment has broken down and I don’t have the money to replace it.
Says a service provider. “I’m taking action to protect the people I’m caring for and my funding is threatened.”

Every day brings a damnable dose of disability specific worries. From women living with violent partners, people living in psychiatric hospitals, parents whose children with autism don’t understand the restrictions on their life, people with facial differences harassed more than usual …

Minister Qualtrough stated that a a disability inclusive approach to Government decision-making and action was necessary.

She seemed to be saying let’s do whatever it takes to keep you alive, healthy and thriving.

Finally the assurance the disability community was waiting for.

You could sense the beginning of a collective exhale. It’s such an important first step.

Maybe when we build the right container there will be enough water to keep everyone afloat. For now. And for later.

NOTE: Here is Minister Qualtrough’s advisory group. I’m honoured to be on it.

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Love During Adversity is a Powerful Combination

aletmanski — Fri, 20 Mar 2020 19:40:35 +0000

I’ve noticed three different states of mind related to the Covid-19 virus.

1) OMG this is a disaster. Somebody, anybody, please do something.

2) The people in authority are best positioned to tell us what to do.

3) The situation is unprecedented. No one is completely sure what to do. We are all in the same boat.

It’s easy to spend too much time inside the first mindset. To get stuck in the bog of fear, panic and desperation. And to spin one’s wheels. Rationing your media is a good idea.

The second is both true and not true. It’s important to pay attention to what the experts and scientists say. Their advice is indispensable. However they, like everyone, are in a state of active learning.The ground is constantly shifting. New discoveries are emerging daily.

The third response requires us to keep our thinking caps on. To exercise our own good judgement. To spot the gaps. To pay attention to who and what is being ignored. To join with like minded others. And to act.

To act with confidence and courage. Even though we are not completely certain we are doing the right thing. Its risky. That’s why acting alongside caring others is critical. It makes us smarter.

Here is a key finding from those involved in previous outbreaks, and crises (ebola, SARS and forest fires.)

Every encouragement should be given to local, creative, adaptive problem solving. Authorities should listen carefully to information from below about what would help to make a difference.

Love and adversity is a powerful combination.

To illustrate here is an excerpt from my new book, The Power of Disability. I titled it, Breathing Love into Zika:

In the lead-up to Brazil’s 2016 Summer Olympics and Paralympics, the world’s gaze was fixated on what the media described as the horror and tragedy of congenital Zika syndrome (CZS). They portrayed Brazilian parents and their babies as grieving victims. They used the images as a backdrop to discuss the herculean challenge that Western science has to overcome to eradicate the virus. In doing so, the journalists missed another gaze—the look of love in these same parents as they fussed over their babies.

They also missed the determination of Brazilian parents, particularly moms, to rise to the occasion.

These parents consider their children a blessing even though they face tough challenges and strains, including the demonization of their babies. They know that science and technology can’t solve every problem, and that they distract attention and deflect resources that should be available to support these families.

Brazilians with disabilities and their families receive limited government support. So a group of mothers who have had babies with CZS created United Mothers of Angels (UMA) to share information, referrals, and treatment, and to make sure their children are not forgotten.

They call each other guerreiras (warriors). Germana Soares is their leader.

“We are protesting so that this generation of special needs children will not be rendered invisible. Our babies are citizens, they have rights, and while they cannot speak we are their voice,” she said in an interview.

Germana’s son Guilherme has already exceeded the predictions of doctors. He is starting to speak. “He has a really strong personality, he is very strong-willed,” said Soares. “He knows what he wants and when it’s a no, it’s a no.

Debora Diniz, a Brazilian anthropologist and lawyer, and author of Zika: From the Brazilian Backlands to Global Threat, described these mothers in an interview as “the domestic scientists who have been key in advancing our understanding of CZS.”

She said they are guiding the “white coats and biomedical groups.”

Stay Home. Stay Connected. Stay Cheerful. And if you are looking for something to read.

The post Love During Adversity is a Powerful Combination first appeared on Al Etmanski.

Let us rally the lovesick and brokenhearted

aletmanski — Fri, 06 Mar 2020 00:20:26 +0000

Our inadequacy in the face of the world’s suffering and desecration disturbs us.

As it should.

We flinch every time we use another plastic bag, step around a fellow human being sleeping on the sidewalk, hop on a plane, fill up at the pump, or ignore another call to sign up, donate and take action.
We steel ourselves when news of another atrocity big or small finds us.
We struggle to digest another exposé on how bad things are. We shudder when someone betrays our trust.

The experiences mount up. They come at us everyday from near and far. We can’t hide, they find us wherever we go.
They make us sick with fear, anger and helplessness.
We gather those we love even closer. We seek delight and diversion.
We wonder, is there is a limit to the number of times the heart can be broken before it hardens?

Let us not wait to find out.

Let us pick up the pieces of our broken hearts and make a shrine to our shared vulnerability.
Let us refuse to be talked out of loving actions by statistics, forecasts and analysis.
Let us rally the lovesick and brokenhearted and fall in love with the world again.

Just like when we were young and all things were possible.

My Book, The Power of Disability: Many years ago the popular blogger Seth Godin started a project to have interesting people write short social change manifestos. The project has been taken over by the folks at Porchlight Books. To my delight they created a manifesto out of the five disability advantages I describe in the book. To buy the print, electronic or audio edition of the book click here. To write a review here or here.

The post Let us rally the lovesick and brokenhearted first appeared on Al Etmanski.

There can be no justice without love

aletmanski — Fri, 14 Feb 2020 04:30:30 +0000

MY NEW BOOK: I was still blushing over Aaron Johannes’ review of The Power of Disability when Markets Insider chose it as one of twelve books that human resource managers should get in 2020 if they want to build diverse teams. Now I’m blushing and tickled. Speaking of reviews, I’m told by those who know about these things that a review on Amazon, Indigo or your favourite book buying site makes a huge difference. If you like the book please drop a line or two or three into a review.

My wish for Valentine’s Day is that we pay more attention to those who are loving a better world into existence. And who remain open-hearted toward the broken-hearted and hard-hearted. Here is why I think they do it.

The attraction between mutual love and the common good is not new. They found each other the instant people began taking care of each other. There is no better inspiration for making the world more just and inclusive than having those we love in danger, vulnerable or suffering. We act. Not as an intellectual pursuit. Not as an institutional duty. Not as a contractual responsibility. Not when it’s convenient or popular. But because it’s what we do in a caring relationship.

Reinhold Niebuhr, who wrote the Serenity Prayer long associated with Alcoholics Anonymous, described this reciprocity as “justice-love.” He’s not alone in believing that love enlightens justice. It’s a reminder that law makers and social justice advocates should pay more attention to caring relationships than to the letter of the law. When justice gets reduced to legal matters it takes up too much space and crowds out the affection, human warmth and friendship at the heart of civic life.

Mia Mingus, writer, educator and community organizer advances the conversation by noting that disability justice is another term for love. She writes:

“…no matter how on-point our analysis is, if we can’t treat each other well, our work will not get far.”

“… the systems we are up against will require collective work—if we could have changed them on our own, we would have already done it—and collective work requires that we are in relationship with each other in some way shape or form.”

And finally:

“What good is it if we can wage amazing campaigns, if we all end up hating each other in the end?”

Justice has broad and ancient roots. Love makes it transcendent. One way to respond to divisive times is to close the gap between the letter of the law and the spirit of the law. That, like all those other kinds of love, is something we don’t have to do alone.

The post There can be no justice without love first appeared on Al Etmanski.

The Power of Disability is now available

aletmanski — Tue, 04 Feb 2020 22:42:21 +0000

They, and by they I mean good friends who specialize in spreading the word, assure me you won’t mind receiving the news more than once. My fourth book went on sale today and they urge me to shout it from the rooftops. I’m pretty excited so here’s my shout out.

Dear Reader

I have a special request. A little over a year ago you helped me choose the title of my new book – The Power of Disability: 10 Lessons for Surviving, Thriving and Changing the World. Thank you.

The book is now on sale and I’m pretty excited to get your impression. Here’s a link to all the places where you can buy the print, electronic and audio editions. My website has much more information including book excerpts, Table of Contents and early reviews.

And now for the request.

Will you join my informal Power of Disability Network? I need help to spread the word? The publishing world is very competitive nowadays. More books are being published than ever before. And there are fewer readers. I can’t rely solely on the publisher for promotion.

I wrote the book to correct what history has overlooked and to shine a light on people with disabilities as authorities on creativity, resilience, justice, love, sexuality, dealing with adversity and living a good life. I want to encourage action that removes the barriers that limit everyone’s inclusion, participation and contribution.

You can be involved in the Power of Disability Network as little or as much as you’d like. For example you can:

Write a short review for Amazon, Indigo, Good Reads, your local newspaper, newsletters, blogs
Post on social media using the hashtag #PowerOfDisability
Encourage businesses, foundations, governments and other organizations to use this book as a primer on diversity and inclusion for their employees, customers, members. (Discounts available for bulk purchases.)
Spread the word among advocacy groups, family networks, teachers, doctors, therapists and service providers.
Recommend The Power of Disability to your book club, local bookstore or public and school libraries
Introduce me to journalists and podcasters.
Host a Power of Disability celebration. Use the book to shine a light on the power of people with disabilities in your community.

To pique your interest I’ve posted the full Introduction (PDF) on my website just for you. If the book meets your expectations please tell others. If you have other ideas or want to followup contact me at al@aletmanski.com.

I’ll leave you with this quote from Michael J. Fox:
This book reminds us of what we have in common: the power to create a good life for ourselves and for others, no matter what the world has in store for us.

I’m immensely proud of his support and would be honoured to have yours as well.

Thanks,
Al

PS: I will be launching a weekly “Disability Digest” very soon. It will profile the abundance of artistic, scientific, political, and other achievements by people with disabilities. Please send me your suggestions. And encourage others to sign up. It’s a two step process. After signing they’ll receive an email asking them to confirm their email address. If you already subscribe to my blog you are already signed up!

The post The Power of Disability is now available first appeared on Al Etmanski.

My new book is being printed.

Al Etmanski — Tue, 03 Dec 2019 05:45:13 +0000

Dear Reader

You are the first to know.

My new book The Power of Disability: 10 Lessons for Surviving, Thriving and Changing the World is at the printers. It contains more than one hundred stories of individuals from twenty countries celebrating people with disabilities as the invisible force that has shaped history. Their contributions have been instrumental in the growth of freedom and birth of democracy. They have produced heavenly music and exquisite works of art. They have unveiled the scientific secrets of the universe. They are among our most popular comedians, poets, and storytellers. And at 1.2 billion, they are also the largest minority group in the world.

In fact if the history of the world was written without the contributions of people with disabilities you would not recognize the world. It would be a much different place and in much rougher shape, even though the history books have missed most of these achievements or have given credit to someone else.

You will recognize many of the people I write about although you may not know about their disability connection. For example Greta Thunberg, Leonard Cohen, Robert Munsch, and Anna Sewell author of Black Beauty.

Some are finally getting recognition. For example, the Japanese artist Yayoi Kusama. During the 1960s, she was an integral part of New York’s avant-garde art scene influencing Andy Warhol’s painting style. Georgia O’Keeffe was her business adviser. In the early 1970s she returned to Tokyo and became a voluntary patient in a Tokyo psychiatric institution because she wanted help to deal with the hallucinations and panic attacks that were increasing in intensity. She still lives there. Ignored for decades she is the most popular artist in the world today, based on gallery and museum attendance. The lineups for her Infinity Mirror Rooms are hours long. You can read more about her here. Kusama is known as the “priestess of polka dots.” You’ll recognize her influence on my book’s art work.

Others you will enjoy getting to know. People like Dame Evelyn Glennie, who is a virtuoso percussionist. Glennie is deaf and performs in her bare feet in order to “hear.” She is on a mission to teach the world to listen in order to improve communication and social harmony. Then there is Chinese poet Yu Xiuhua, who is considered the Emily Dickinson of China. Her poem “Crossing Half of China to Sleep with You” has been read by millions and has made her the voice of feminism in her country.

The stories reveal people with disabilities as authoritative sources on creativity, love, sexuality, resistance, dealing with adversity, living a good life and social change.

The Power of Disability goes on sale February 4th, 2020. More details including excerpts here

The post My new book is being printed. first appeared on Al Etmanski.

We’re From Civil Society and We’re Here to Help

Al Etmanski — Thu, 06 Sep 2018 20:15:47 +0000

In a healthy democracy citizens are engaged as mature equal partners with government.

They recognize government’s limitations and pitch in to compensate.

They pursue solutions while also improving the overall decision making capacity of government.

They take care not to undermine faith and confidence in the democratic process.

They create a healthy boundary between civil society and government.

To do so requires a loving mindset. Or if that’s too daring for you, a mindset that sees government as a friend. Recalcitrant, insensitive and arrogant at times, but a friend. A friend as vulnerable and imperfect as you are.

This is different than thinking of government as parent. Pointing out their faults and still expecting them to perform to perfection. Or depositing a problem at their doorstep and saying fix it. Even though you know they can’t.

It takes imagination to redefine your relationship with government.

To create a new process for a particular problem or challenge rather than accepting the existing process.
To not accept government’s timing EX: 4 or 5 year election cycles.
To sort out the subtleties, nuances and complexities of issues as a prelude to government decision making. E-democracy and citizen assemblies for example.
To restore civility to policy discussions.

That’s the imagination that led to the creation of Reconciliation Canada. Or that created safe injection sites long before governments did. Or the spread of hospice around the world. Or the Great Bear Rainforest agreement. Or the Vulnerable Persons Standard which guided Canadian legislation on medical aid in dying. Or inclusion and accessibility legislation. Or the Gwaii Haanas Agreement to jointly manage the waters surrounding Gwaii Haanas National Park and Haida Heritage Site. Or … I’m sure you can think of other examples.

The days when “we’re from government and we’re here to help” are long gone.

Let’s replace them with “we’re from civil society and we’re here to help.”

EH!

If history is, as I believe, a feast, the flavour comes from its people. ~ Margaret MacMillan, historian.

Musical accompaniment this post is the hauntingly beautiful Try Again About Everything by Rae Spoon. Consider buying their music. Isn’t it precious?

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The post We’re From Civil Society and We’re Here to Help first appeared on Al Etmanski.

Your Base is Just a Baseline

Al Etmanski — Thu, 23 Aug 2018 20:54:17 +0000

Dear Reader – I hope this post makes you curious about new approaches to organizing, campaigning and achieving your objectives.

Unless you have all the support you need, your twin organizing goals are:

One, to maintain your existing base and

Two, to appeal to those beyond your base.

This is harder than you think.

You can’t keep your current base happy without taking action on the issues that brought them to you.

However your strategies and tactics may undermine your appeal to others.

This is counter intuitive to many.

The conventional wisdom suggests that if you take action on the concerns of your constituency, others will notice and want to join in. Especially if you achieve your objective and stop, prevent, rescind or change something.

Not necessarily so. In fact there is evidence the opposite happens and that certain strategies and tactics can be counterproductive to increasing the size of your base.

There seem to be many reasons. Here are three.

Fatigue – people are already tired and worried about the challenges in their busy lives. An actual disaster, a message that emphasizes crisis or predicts societal collapse add to the fatigue. So does pouring more data on the debate. It can become overwhelming. See here and here.

Fear – threats, conflict, polarization, acrimony, demonization spread the belief that nothing works anymore, no one can be trusted and nothing can be done. That turns into fear. Some run in the opposite direction. Some retrench. Others opt out. Overall, trust disintegrates. Including trust in you. See here and here.

Frustration – At being made to feel guilty for not doing enough. Or for not doing what you think they should be doing. At not being given credit for making up their own mind. At being shamed. Studies suggest shame is a useless change agent.

The result, your base remains marginal. Not strong enough to generate the widespread popular support that is necessary to embolden politicians to make tough decisions. See here.

What to do?

1) Change your mindset from we/they, good/bad, either/or to both/and. We are in this broken and beautiful world together. See this. And this messaging from Stewart Brand of Whole Earth catalogue fame.

2) Engage with the caring majority instead of the usual stakeholders and decision makers. Pay attention to the issues they hold just as dearly as you hold yours. Expand your repertoire to include their concerns. Help them solve their problems. Remember not every voice has been heard and not every contribution has been counted. See here.

3) Invest in tough, honest and civil conversations. Create opportunities for people with strongly held and differing views to come together. Embrace moral disagreements. Don’t avoid them. See Adam Kahane’s work for example. Or this. Also CBC Ideas, Why Democracy Depends on How we Talk to Each Other.

4) Use the language of beauty, love, happiness and peace. Not the language of alarm, catastrophe, emergency and war. See this piece on Hannah Arendt and loving the world. Also this, this and this.

The methods that worked for you in the past may not be enough to address the very real and legitimate concerns that exist in the present. In that regard your base is just a baseline. Hopefully a threshold not a barrier.

EH!

It is the essence of imaginative culture that it transcends the limits both of the naturally possible and of the morally acceptable. ~ Northrop Frye

Musical selection this post is I Give You Power by Arcade Fire featuring Mavis Staples.

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The post Your Base is Just a Baseline first appeared on Al Etmanski.

Don’t Give Up

Al Etmanski — Thu, 09 Aug 2018 20:29:36 +0000

A change of government is always challenging. Particularly if you don’t respect the leader. Understandably you brace for the worst. The danger is that you succumb to the drama. And a prophecy is fulfilled.

On the other hand all new governments, yes all, are looking for new ideas including those that will bail them out of the pressure they are under. This is a perfect time for relationship-based advocates to come forward with solutions. The big changes that I’ve been associated with, the ones that moved the dial, have come from so called unsympathetic governments.

So…

Don’t give up even though the shock waves of the campaign still echo. And seem to be coming true.

Don’t give up. You can stand your ground and keep your heart open, even though those around you are closing theirs.

Don’t give up, even when others are dismissive and the story making the rounds is seething with shame, blame and anger.

Don’t give up. You have allies waiting for you in Cabinet and caucus and among party members and supporters.

Don’t give up. Your members, supporters and constituencies need you to be more clearheaded, clever and caring than you’ve ever been.

EH!

Common ground is more common than you might think. Don’t ever stop trying to stand on it. ~ Jann Arden

Musical accompaniment this post is Don’t Give Up sung by Peter Gabriel and Kate Bush. The song was inspired by Dorothea Lange’s photographs of the American depression. In keeping with the Canadian content in this section, this brilliant song was produced by the incomparable Daniel Lanois.

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The post Don’t Give Up first appeared on Al Etmanski.

10 Canadian-International Book Pairings

Al Etmanski — Fri, 03 Aug 2018 05:00:28 +0000

Looking for a good book or two? Here are ten of my favourite Canadian books paired with ten favourites by writers from away. For your long weekend reading pleasure.

A Disappearance in Damascus, the true story of reporter Deborah Campbell’s time in Syria. Excellent background on the reasons behind the Syrian disaster. The search for her missing fixer will keep you on the edge of your seat. Exit West by Mohsin Hamid follows a young married couple who have to leave a a fictional city that can only be Damascus. Their migration takes them to Mykonos, London and San Francisco.
Lands of Lost Borders is Kate Harris’ own story about cycling the various arteries of the silk road. The Silk Roads by Peter Frankopan is a history of the world from a Persian perspective. A refreshing alternative to the Greco-Roman version most of us grew up with. Even the Renaissance was dependent on our relationship with the east.
Bury the Bones by Louise Penny has Inspector Gamache solving the mystery of Champlain’s final resting place in Quebec city. In Champlain’s Dream David Hackett Fischer draws a straight line between many of the values we take for granted in Canada and this remarkable French explorer.
The Trickster by Eden Robinson and The Ministry of Special Cases by Nathan Englander revolve around father-son testiness, mixed with intrigue, strong mothers and spirits. Trickster is set in Northwestern BC. Special Cases in Buenos Aires during the “disappearances.”
Mad Enchantment is Ross King’s lively background account of Claude Monet’s famous water lilies. Were some of them black? Check out Michel Bussi’s mystery Black Water Lillies set in Monet’s home village of Givery.
Fighting for Space by Travis Lupick is the story of the plucky people including the Vancouver Association of Drug Users who responded quickly to Vancouver’s opioid crisis months before the formal system got its act together. Pair it with the Patrick Melrose novels by Edward St. Aubyn. There are 5 of them. It’s an intimate, gripping story of one person’s descent into drug use and addiction. It has just been made into a BBC series starring Benedict Cumberbatch.
Love and Power a reflection by one of the world’s most effective peacemaker Adam Kahane on the importance of balanced tension between love and power. Goes well with The Power by Naomi Alderman. Same theme, same tension but off balance. Written as science fiction but more like reality.
The Heart Does Break: Canadian Writers on Grief and Mourning by George Bowering and Jean Baird and The Year of Magical Thinking by Joan Didion. Deeply personal reflections on a universal experience.
The Colony of Unrequited Dreams by Wayne Johnston tells the story of larger than life Joey Smallwood leading Newfoundland into Canada and becoming its first premier. Barkskins by Anne Proulx makes life in New France in the late 17th century come alive in unforgettable detail. Two examples of historical fiction at its best.
Rudy Wiebe’s Big Bear and The Temptations of Big Bear tell the story of an extraordinary Indigenous leader and his lonely struggle to resist an unfair treaty pressed on his people by the Canadian government. Pair this with Bury the Chains by Adam Hochschild. It’s the story of the extraordinary English abolitionists, particularly Thomas Clarkson, who successfully campaigned to end the British slave trade in the early 19th century. The burden of leadership wore Big Bear and Clarkson out. Their methods and resolve still shine brightly.

EH!

A story is a shifting creature, an eternal mirror that catches our lives at unexpected angles. ~ Madeleine Thien

Musical selection this post is Fam Jam by Shad. It contains this line: “Now when you’re third world born, but first world formed, sometimes you feel pride, sometimes you feel torn.” Support his music.

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The post 10 Canadian-International Book Pairings first appeared on Al Etmanski.

You Have More Power Than You Think

Al Etmanski — Fri, 20 Jul 2018 01:50:13 +0000

You have more power to achieve the changes you are after than you think. Not as much as you might like. But more than you realize.

The trick is to claim it. And not let the boundaries of that power be defined by others, particularly government.

How much should you claim?

As much as you need to accomplish your task. You will know that you have reached the frontiers of your power when the reaction is – “our statutory responsibilities won’t allow it,” “this has never been done before,” “don’t worry we’re creating an advisory process.” Those statements should be treated as signals to keep pushing. Respectfully but with confidence.

Here’s a current example ripe for power claiming. In June the federal government proposed an Accessible Canada Act. It emerged from what the government described as the most inclusive and accessible consultations with more than 6000 Canadians. And of course decades of lobbying by advocates with a disability, particularly David Lepofsky.

The act is not yet law and the biggest mistake advocates can make is to hang back and wait. Until the proposed Act is introduced into the House in the fall. Until it is passed by the House and Senate. Until the federal government launches an implementation process.

Instead people with disabilities should picture themselves in charge of implementation. Not as advisors or monitors to the process but as leaders directing it. Starting now. This requires a shift in mindset from “nothing about us, without us” to “what’s about us, is up to us.”

What we know about implementation is that the capacity of the system seldom matches the bold intentions embedded in legislation, strategic plans or new programs. This is not to suggest there aren’t good people in government. There certainly are. However it is a recognition that the existing structure is old, embedded with yesterday’s assumptions and tends to default to the status quo.

The proposed Accessible Canada Act is the equivalent of assembling the tools and construction material to build a bridge to a more inclusive world. The bridge has yet to be built. The only way a structure that ambitious can be built is for people with disabilities to take the lead.

Here are seven approaches to claiming power that I’ve had some success with:

“Negotiate” a Joint Working group (JWG) consisting of equal numbers of people from the disability world and government representatives to oversee implementation. Decisions of the JWG must be by consensus. The working group must have the authority and resources to implement.
Establish an Accessibility Development Unit under the auspices of the JWG to work out the inevitable kinks that happen during implementation.
Create an Ability Innovation Fund to invest directly in people with disabilities and their families as accessibility problem solvers. Chances are there are hundreds of solutions just waiting to be spread.
Host a federal-provincial-territorial conference. While the purpose of the bill is to make Canada barrier-free in areas under federal jurisdiction, accessibility doesn’t stop at those boundaries. The disability community has a better chance of convening such a gathering than the feds do. Especially in the current federal-provincial-territorial climate.
Appoint a team of independent auditors with a mandate to report from the field on whether the new legislation is making a practical difference to individuals with a disability.
Create an on-line forum to enable people with a disability to give regular feedback to the JWG on strategic priorities, to gauge consensus on tough implementation choices and to propose helpful solutions. See ethelo.org for lots of great examples.
Invest in artists with disabilities. Cultural awareness is a key part of the proposed legislation. This cannot be accomplished without artists.

In the words of former Prime Minister, Kim Campbell, “Look, power exists. Someone has to have it. If you would exercise it ethically, why not you?” Besides it is a lot more fun than waiting.

NOTE: An early version of this post was recently published as “The dawning of a new age for persons with disabilities” in The Toronto Star. A longer version is being distributed by Evidencenetwork.ca to newspapers across the country.

EH!

Change is inevitable, growth is optional. ~ Marsha Forest & Jack Pearpoint

Musical accompaniment this post is We’re Not Gonna Take It by rock star and humanitarian Biff Naked. Isn’t she powerful? Buy her music here.

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The post You Have More Power Than You Think first appeared on Al Etmanski.

10 good reasons why people who are poor should be in charge of ending poverty

Al Etmanski — Fri, 06 Jul 2018 16:03:27 +0000

People who are poor never get to be in charge of ending poverty Even though they know more about poverty than anyone. Here are ten good reasons why they should be.

Every percentage point of the Canadian population represents 360,000 people. Since 9 to 12 % of Canadians are poor (depending on which poverty measure is used) that’s too many people.
Poverty “reduction” plans reflect a timid mindset at odds with bold intentions.
Statistics don’t tell the personal stories of hunger, hardship, dashed hopes and lost contributions.
There is a big gap between best laid plans and the capacity of government and their non-profit agencies to implement them.
They have ideas that challenge the service delivery system to rethink the programs they offer.
They have solutions that exist outside the service delivery system.
Adversity is a better source of innovation than the intellect.
You wouldn’t like it if someone undermined your ingenuity, resilience and capability.
Someone has to make sure that the various poverty solutions are in alignment. Ex: minimum wage, living wage, welfare reform, affordable housing, basic income.
Professionals would learn how and whether they can be of help.

People who are poor should be given a chance to define poverty and its causes on their terms, determine solutions based on their experience and choose the partners they want to implement with.

A good place to start would be to provide funds to support people who are poor to:

Test, develop and grow their solutions to poverty and its prevention
Own their own “prosperity” innovation lab
Design and run their own conferences – their agenda, their invitations, their chance to strengthen their grass roots connections and to mobilize community resources.

Previous efforts have fallen short. There is no guarantee that a fresh injection of professional energy no matter how enlightened will be any different. It’s time for people who are poor to be in the driver’s seat.

EH!

I have never been able to tolerate others telling me how we are, and I do not believe anyone but us knows who we are. ~ Lee Maracle

Musical accompaniment this post is “What You Do With What You’ve Got” by brother sister duo Qristina & Quinn Bachand. Based in Victoria they’ve won a ton of awards for obvious reasons. Check them out and do support their music.

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The post 10 good reasons why people who are poor should be in charge of ending poverty first appeared on Al Etmanski.

Yaniv Janson is Changing the World One Painting at a Time

Al Etmanski — Thu, 21 Jun 2018 23:53:32 +0000

“I wonder what they think about climate change?”

That question contained the most compelling vision of inclusion I have ever encountered. It was offered by a speaker in Scotland a number of years back.

She asked us to imagine a time when people with disabilities were recognized for what they thought about the big issues of the day and for what they were doing about it When that happened, she said, we would know that a big shift had occurred. And that the fixation with labels and diagnosis was declining.

Fortunately that vision is becoming commonplace. Not because people with disabilities are suddenly making contributions. Although they are finding more ways to do so. But because more people are paying attention.

In the case of Yaniv Janson 77,988 people are paying attention, to be precise. That’s the number of people who have visited his Taking Action website which promotes the UN’s sustainable development goals. That’s not counting those who visited his solo exhibition, Please Do Touch at UN Headquarters in New York earlier this month. (June 2018) Or the 400,000 who viewed his profile in Air New Zealand’s magazine.

Yaniv Daniel Janson is an artist and writer based in Raglan on the west coast of New Zealand’ North Isalnd. He is the youngest artist to be invited into New Zealand’s Academy of Fine Arts. His work has been displayed in more than 40 museums and galleries in four countries.

There’s no doubt about what Yaniv thinks about climate change. Or clean drinking water, eliminating poverty, protecting the oceans, and affordable housing. He gets right to the point in his painting and writing. He has a talent for cutting through chatter and clutter. He had no time for my careless generalizations during a recent dinner Vickie and I had with him and his parents, Robin and Annick.

Yaniv is equally determined on the action front. He says, “I am one of those people who think they are going to get what they want.” He launched “Taking Action” after five years of consultation with New Zealand’s disability community. He’s written 5 books, campaigned to reduce the use of plastic, exhibited his art in a Paris gallery and picked up numerous awards and citations. That’s numerous as in considerable! And he’s still in his twenties!

The word “happy” pops up in his latest book Please Do Touch – happy ocean, happy plants, happy cities, happy shapes, happy colours… It also comes to mind when you experience his paintings. And it’s certainly in the air when you’re in his presence. People are drawn to his happy imaginings. Not because the other reality of what’s wrong and not working doesn’t exist. But because the fixation on that reality makes it hard to do something about it.

Happiness is a universal desire. Fortunately Yaniv’s refreshing combination of art and justice is lighting the way.

Dear Reader: this post is part of an occasional series, Lessons From the World of Disability.

EH!

Dreams shape reality. ~ Judith Snow

Musical accompaniment for this post is Now and Then by PEI’s unparalleled singer-songwriter Catherine MacLellan. Please support her music. She is performing If It’s Alright with You – the songs of her father, Gene MacLellan three nights a week in Charlottetown this summer. PEI dreaming…

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Visit socialchangequotes.com to browse Canada’s largest collection of quotes about social change, curated by Al Etmanski.

The post Yaniv Janson is Changing the World One Painting at a Time first appeared on Al Etmanski.

Making Peace with Fear, the Convincing and Beautiful Presence of Katheren Szabo

Al Etmanski — Mon, 18 Jun 2018 19:45:07 +0000

Katheren Szabo knows how to make peace with her fears.

Which is something most of us aspire to.

Especially during these outrageous, topsy turvy times when a low level state of fear hovers like a dirty cloud.

For many good reasons that are too personal to be told by anyone but her, Katheren’s fear kept her isolated in her housing complex in the Newton neighbourhood of Surrey, British Columbia for ten years.

Fear for her safety. Fear of strangers. Fear for her four children. Fear of the past. Fear of the unknown.

Fear that might have magnified after she heard the news that a local Mom had been robbed of $40.00 and murdered in broad daylight beside a park called The Grove near Katheren’s home.

Instead of retreating further Katheren did the thing she thought she could never do. She left her home, headed to The Grove and began a sixty day vigil for peace and safety. The Grove – where drugs are dealt and consumed. Where men bluster and stagger. Where the suggestion of danger lurks and people hurry through on the way to somewhere else.

Why did she do it?

“Because Julie looked a lot like me,” says Katheren. “I identified with her. She was the same size as me, a bit younger .. dirty blonde hair. Besides, due to my own life experiences I had been mute for 50 years. That’s long enough.”

In those days she didn’t know a soul. Five years later she’s known as the heart of Newton. People know her and because of her, they know each other.

She helped create Friends of the Grove. They use music, art and playfulness to bring fun, peace and harmony to The Grove and Newton neighbourhood.

She started Cedar Bark Poets (there’s a beautiful cluster of cedars in The Grove) to publish and distribute the work of local poets. She knows the special talent that poets have to make desecrated places sacred again. Perhaps that is why the facilitator of Cedar Bark Poets for two years was the daughter of the Mom who was killed. And who once swore she would never have anything to do with the scene of her Mother’s murder.

She discovered Fambul Tok (family talk) a community process of reconciliation that emerged to heal the wounds of Sierra Leone’s brutal, “blood diamond” civil war. She thought it could help heal the lingering pain in her neighbourhood. So she organized Canada’s first Fambul Tok, a multi-cultural celebration of peace, forgiveness and community.

Along the way she’s picked up awards, acknowledgments and speaking gigs. Including keynote speaker at the Canada-Sierra Leona Cultural Heritage Day. And she is one of the headliners at Surrey’s Social Innovation Summit this fall.

Clearly Katheren’s life is expanding in proportion to her peacemaking.

You can experience her convincing and beautiful presence for yourself by visiting with her any day from now until August 5th from 10:00 am to noon, weather permitting. Or follow her on twitter @Katherenfog . Or consider inviting her to speak. (Let me know and I’ll make an introduction.)

She’s ready for the world to call. And with good reason.

We have so much to learn from her.

EH!

Perhaps there is only one distinction that matters: those who are learning to love their neighbours and those who remain indifferent to them. ~ Mary Jo Leddy

Musical selection this post is Paddy Dem by Fazineh. A former child soldier in Sierra Leone, he now lives and works in Vancouver. Check him out and support his music here.

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The post Making Peace with Fear, the Convincing and Beautiful Presence of Katheren Szabo first appeared on Al Etmanski.

POP Goes the Vernacular

Al Etmanski — Fri, 08 Jun 2018 02:04:34 +0000

Vernacular is a good word to know but not a good word to use in a speech, song or sentence.

It means the language of the people. Which is where Shakespeare found his poetry.

It’s the reason Leonard Cohen left poetry and became a singer/songwriter.

It’s the secret to writer Alice Munro’s success including her Nobel Prize. She extracts great themes from ordinary lives. And finds meaning in the everyday.

It’s the reason hip hop now outsells rock and roll. Check out hip hop artist Kendrik Lamar. He’s the first rapper to win a Pulitzer prize. He also produced the soundtrack for the Black Panther movie. His lyrics may be hard to understand when you first listen to him. Just like opera. But he’s pure genius. And worth the effort.

It’s why spoken word poets such as El Jones, SPIN El Poeta, Meharoona Ghani and Shane Koyczan are reaching audiences who would never open a book of poetry.

It’s why I like country music and its flirtation with the maudlin, trite and trivial.

It’s what I try to do with each of these posts – keep them short, plain and focused on one topic. Which I find hard to do.

Here what I’m learning about the vernacular:

Its themes are timeless and profound
It plays out everyday, while washing dishes, changing a bedpan, wiping noses, pulling weeds… And bubbies over in kitchens, laundry rooms, back alleys, backyards, stockyards and mountain slopes.
It reconnects you with your roots. Most of us are one or two generations removed from the farm, the forest and the factory.
It’s where most of us hang out.
It happens while you are busy making plans and policies.
It means something special to an awful lot of people.
It’s essential to change making.

All you have to do is translate people’s happiness and sufferings into the language of all. And not take yourself too seriously.

EH!

People’s lives, in [my home town] as elsewhere, were dull, simple, amazing, unfathomable – deep caves paved with kitchen linoleum. ~ Alice Munro

Musical selection this post is SPIN El Poeta’s To All My Boyz in the Hood. He says things to young men flirting with the law that few adults can get away with. Aside from being national Slam poetry champ he is an arts educator and youth advocate.

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The post POP Goes the Vernacular first appeared on Al Etmanski.

Making Political Love

Al Etmanski — Thu, 31 May 2018 23:36:11 +0000

Partisan politics continues to disappoint. Regardless of which party is elected, promises are broken. When decisions are made they are usually incremental. Never going as deep and substantive as promised. Even when bold decisions are made, bold implementation remains elusive.

There are many reasons for the limited capacity of governments to tackle tough issues with resolve. Here are some. The job of politicians is tougher than you think. Political ‘realities’ are a fact of life and would challenge the very best of us. The quality of political leadership, like every profession, is uneven. On top of that, government institutions were designed to preserve the status quo. Sometimes that’s a curse, sometimes a blessing.

Another reason is the lack of a firm consensus from the electorate. Without it tradeoffs, contradictory policies and partisan calculation flourish.

Governments perform necessary functions. But they do not have a monopoly on achieving or interpreting consensus.

That task is better suited to civil society.

Citizens and their groups know each other as friends, family, neighbours. They know each other’s caring capacity, desires, worries and limitations. They are uniquely positioned to make political love. They can for example:

Focus beyond electoral cycles and disregard the imperative to win the next election
Engage with people regardless of who they voted for and what their stated beliefs are
Sort out conflicts, grievances, divides and disagreements outside the partisan political box. Here are three citizen-led examples, Ethelo Demorcacy, MASS LBP, and Energy Futures Lab.
Reward elected officials for seeking common ground
Surround partisan nastiness with love.

Making political love is critical to political decision making. It mobilizes popular support. It comes before political boldness. It is an antidote to resignation, cynicism and competing choruses of righteousness.

This is not an argument to stop participating in the partisan political process. Instead, I invite you to consider approaching politics as a lover. It’s harder and much more challenging work. And essential for refreshing our democracy.

EH!

Non state organizations often have the imagination which the world needs, but only states and governments have the mandate and power to change laws and regulations and obligations. ~ Joe Clark, former PM

Musical accompaniment this post is Our Purpose Here by the legendary singer-songwriter Ferron. Support her music.

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If you don’t know there are potatoes in the borsch …

Al Etmanski — Thu, 10 May 2018 21:03:18 +0000

My Polish ancestors used to say: “If you don’t know there are potatoes in the borsch there could be orphans working in the mine.”

In other words if you don’t know what’s going on in your own backyard there could be big problems elsewhere.

The truth of that proverb is brought home in a recent Brookings Institution report: Who and What Gets Left Behind which assesses Canada’s progress toward meeting the 17 Sustainable Development Goals (SDG) agreed upon by all 193 United Nations members. It’s the first such study of a G-7 nation.

The results are disturbing and sobering. While Canada is a prosperous country and continual ranks at or near the top of the world’s most liveable countries it comes at a terrible price.

The study reveals Canada is actually going backwards on a number of indicators. For example: rates of hunger, obesity and malnutrition are rising. So is access to affordable housing and safe drinking water; exploitation trafficking and sexual violence against children; reported crimes against women, marine pollution, and the prevention and treatment of substance abuse.

Progress is also stalled on meeting a number of other goals. For example, three million Canadians still live in poverty and the numbers are barely changing. Similarly, major breakthroughs are needed to achieve progress in recognizing and valuing unpaid care and domestic work and to reduce greenhouse gas emissions.

Indigenous people, immigrants and people with disabilities are disproportionately represented among those who don’t enjoy what most of us take for granted. Food insecurity among indigenous peoples is more than twice the national average for example.

None of this information is new. Most of it has been reported on. However, to the best of my knowledge it’s never been collected in one place. Certainly no one has connected the dots this thoroughly between our social and environmental challenges.

What may be old is our approach no matter how innovative it seems to be.

Whatever we are doing as entrepreneurs, innovators, organizers, policy advocates and activists isn’t achieving the results we want. Clearly it’s time to shake it up.

Lots of suggestions come to mind including:

An annual national report card on social/ecological justice based on the Sustainable Development Goals to keep us on track. Maybe the Community Foundations of Canada could take their excellent Vital Signs initiative up a couple of levels?
More joined up actions between social and environmental groups. Working together to expand the clean energy economy while reducing poverty for example.

As for the metaphorical potatoes in our borsch – they are the people who have been left behind. Who live and deal daily with the disparity and injustice referenced above. Shaking it up means bringing them into the heart of the action. Truly. Not as subjects of research or ethnographic studies or participants in labs but by realigning our actions to support their observations and their solutions. Even though they are the main ingredient few notice. Few have tasted their solutions. Few fund their efforts. They don’t fit nicely into social innovation criteria even though they survive and thrive by innovating.

Now that we know my Polish ancestors wouldn’t want us to rest on our laurels.

NOTE: Brookings has just released a followup report to the one above, A Canadian North Star: Crafting an Advanced Economy Approach to the Sustainable Development Goals which outlines their suggestions for Canada fulfilling its SDG commitments at home and abroad. It’s worth a read.

EH!

Now more than at any other time in our history, we need to bring our intelligence and imagination to sustain our life support systems. ~ Alice Munro

Musical accompaniment this post is Rescue by Halifax based Neon Dreams. Purchase their music.

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Blessing Your Presenters

Al Etmanski — Fri, 04 May 2018 00:47:26 +0000

Many years ago J.R., a remarkable community organizer was consulting in a northern Inuit community. One night after supper when stories were being told J.R. told a funny one involving his two young children. The room gasped. No one laughed.

Eventually someone asked, “If you have children why aren’t you at home with them?”

J.R. is not alone.

Too many of us travel around talking about what matters as if we knew.

When the truth is that we are searching for what matters too. Or glossing over it. Or avoiding it.

Talented presenters are a joy to behold. They share their precious gifts to our benefit. Some change our lives.

But don’t assume they live what they are talking about. It’s safer to assume they yearn for what they are talking about.

Here are four blessings to offer your speakers, presenters and consultants:

1) Invite them to tell their personal story complete with the same messiness, tensions and contradictions as yours.

2) Surround them with local story tellers. Don’t leave them isolated on a pedestal.

3) Respect their solitude and silence.

4) Extend a kindness to the precious ones they leave back home.

You may discover that they’ll bless you in return.

Just as J.R. did to his Inuit hosts.

And continues to do.

EH!

I pray that a loving memory exists for them too

The precious ones I overthrew

For an education in the world. ~ Leonard Cohen from his poem “Days of Kindness”

Musical accompaniment this post is Rose Coloured Frames by Calgary’s multi-talented Mariel Buckley. This one’s a classic. Think Roseanne Cash and Bruce Springsteen in one person. Great video too. You’ll recognize yourself in it. Do support her music.

Hey Calgary – her new album release is tomorrow, Friday May 4th.

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The post Blessing Your Presenters first appeared on Al Etmanski.

You Don’t Need to Start Another Movement

Al Etmanski — Thu, 26 Apr 2018 23:28:43 +0000

The question I get asked most often is, “How do you start a movement?”

My answer is always, “You don’t need to start another movement. All you have to do is contribute to the movements that you are already part of.”

In order to do so you have to let go of your belief that your idea, your program, your innovation is the one that other players should rally around.

A movement isn’t a marketing tool. It’s the antidote to “old habits die hard.” It prepares the ground for new and different ways of thinking and acting. It creates cultural receptivity and popular support for new approaches. It makes it easier for a host of innovations with similar objectives to stick, to thrive and to have lasting impact. Including yours.

The work nowadays is less about perfecting or scaling your own work and more about completing your work through the work of others. If a new movement is needed it will emerge through those interactions.

If you want to take your movement responsibilities seriously:

Make a list of the players in the movement(s) you belong to
Identify those whose values and actions you would like to align with because you can’t work with everyone.
Link up and connect the dots.

When you do you will be pleasantly surprised. Your specific work will be enhanced. So will the culture.

Movements are a powerful response to the corporate, technological, militaristic and ideological forces that are harmful to life. Your movement(s) are already in motion transforming culture. They would benefit from your peaceful presence and whole hearted participation.

EH!

Movements are not led towards a goal, but rather emanate from a set of connected and coherent stories, actions and intentions, and self-correct, fail and adapt as they go. ~ Chris Corrigan

Musical selection this post is Keep the Fire by Halifax based Gabrielle Papillon. Intricate music and lyrics perfectly textured for the heart. What a talent. Do support her music.

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Visit socialchangequotes.com to browse Canada’s largest collection of quotes about social change, curated by Al Etmanski.

The post You Don’t Need to Start Another Movement first appeared on Al Etmanski.

Adversity Makes you Wiser

Al Etmanski — Sat, 14 Apr 2018 23:19:28 +0000

Eventually the “slings and arrows of outrageous fortune” will strike you or someone or something that you love. The adversity or tragedy will be deeply personal. It will appear in a variety of forms – accident, loss, death, indignity, cruelty, desecration, brutality and desolation.

Grief, anger, fear and despair are understandable reactions.

But adversity can also make you wiser.

Here are three reasons:

1) Adversity demands your ingenuity. You must do something because no one else is or will. You try anything, borrow anything, cobble together anything. You try at any hour of the day and night until something works. Then you get up the next morning and do it all again because you think you can make it even better. You act with a focus and creativity that you never thought you had.

2) Adversity cracks you open. Suddenly you see the world as it is, not as you thought it to be or want it to be. You embrace its complexities, pain, surprises, destruction, ugliness, kindness and beauty with a love that you never thought possible. You become open hearted.

3) Adversity invites you to rethink sacrifice. You come to understand that sacrifice doesn’t deprive. It endows. That letting go of certain comforts and parts of your lifestyle is both necessary and worth it in order for your life, the life of those you love and indeed all life to survive and thrive.

This is not to romanticize pain and suffering but to honour it. To legitimate it. To bear witness to it. To learn from it.

Adversity doesn’t miss anyone. It can be your teacher if you let it.

EH!

I want to be part of something bigger. There is so much hurt in this province (Saskatchewan) in so many ways, particularly with the First Nations community. There is so much tragedy and affliction in this world and they don’t get the attention they deserve sometimes. I have no idea what this is going to look like, but I want to start a movement of some sort. People are hurting in this province with the whole Colten Boushie trial and it’s time that people reach out. From hurt can come good. ~ Celeste Leray-Leicht who lost her oldest son,19 year old Jacob in the hockey bus crash that killed 16 people from Humboldt Saskatchewan on April 6th.

Musical selection this post is Somewhere Between by Saskatchewan’s Jeffery Straker. Isn’t he a talent? Check out all his music. I could have chosen a dozen for this post. Move over Elton John. Do support his music by purchasing it.

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The post Adversity Makes you Wiser first appeared on Al Etmanski.

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