Histories Uncategorized

The Angel With Broken Wings

Born with a crooked spine and one leg shorter than the other, Manuel Francisco dos Santos, otherwise known as Garrincha, overcame disability to help start a Brazilian soccer legacy.

In 1952, defender Nilton Santos laced up his cleats for a training session with his club team, Rio de Janeiro’s Botafogo. Santos was one of the country’s best defenders. He towered on the field like a colossus, blocking any opponent who tried in vain to drive past him.

But that day he was to face a 19-year-old newcomer on a tryout. The newcomer ambled about with an interesting gait—his spine was crooked and his legs were bent, not quite facing in the same direction as his body. He made Santos look foolish, faking out the great defender and humiliatingly slotting the ball between Santos’ spread legs, collecting it on the other side.

After the training session, Santos is said to have immediately sought out Botafogo’s owner to tell him to sign the player with the crooked legs before someone else does.

The player with the crooked legs was born Manuel Francisco dos Santos, but the world would come to know him by his nickname: Garrincha. He would go on to lead Botafogo to Brazilian championships and win his country World Cup titles. Poems and songs were composed lauding his skills. He became a national hero: an unlikely fate for the handicapped boy born in the small factory town of Pau Grande, forty miles outside of Rio de Janeiro.

Manuel Francisco dos Santos, otherwise known as Garrincha, in his Botafogo jersey.

He was born to a poor Brazilian family of African and Native American ancestry. His left leg turned outward and his right leg turned inward, and they weren’t the same size. His family feared he would never walk, much less run. As an adult, his right leg remained two inches shorter than his left. People called little Manuel crippled and wondered how he could maintain his balance.

But he somehow found a way not just to walk, but to sprint. And little Manuel was so fun and lighthearted that one of his sisters nicknamed him, “Garrincha,” the name of a small local bird that flits from place to place.

The Brazil that Garrincha grew up in was heartbreakingly poor and its people lived for soccer. It was the sport of the masses, one that transcended all class and wealth distinctions. To play soccer, all you needed was a ball, or just a bundle of rags tied up into a ball.

As Garrincha began to play soccer, rumors began to spread on the playing fields of Pau Grande: there was a kid named after a bird, his legs were bent and he had a peculiar walk, and when it came to soccer, he was magic. When he had the ball at his feet, no one could snatch it away.

He began working at a local textile factory when he was 14, but the rumors kept spreading, until at 19, a scout from one of Rio’s top teams came looking for him: Botafogo. After watching him play, the scout dragged Garrincha to Rio to try out with the club, where he had his fateful encounter with Nilton Santos.

From there, Garrincha burst onto Brazil’s soccer scene. Scoring three goals in his debut, he quickly became a key member of the team. He packed a thundering shot and had a sniper-like ability to pick out his team-mates with passes. But what people adored him for most was his dribbling. He seemed to dribble for the fun of it.

His bent legs left it near impossible for defenders to read his body to determine what he was about to do.

His feet were just a little too quick, his footwork a little too intricate. His bent legs left it near impossible for defenders to read his body to determine what he was about to do. He would take on defenders, using a stutter step to unbalance them, then dipping his shoulder as if he was about to dart in one direction, before slipping by them the other way. He became famous for faking his way by a defender, backing up to let the defender regain his positioning, and then faking his way by him again, all as the crowd shrieked in delight.

Garrincha’s dribbling, in fact, is said to have inspired the famous soccer chant, “Olé.” In a match against Argentina, the way Garrincha evaded his defenders reminded the crowd of a matador sidestepping a bull as it thundered through the matador’s red cape. The crowd began saluting Garrincha by collectively shouting, “olé,” every time he faked out a defender. The chant is now ubiquitous across Latin American soccer stadiums.

In 1958, Garrincha was drafted into Brazil’s World Cup team. While today they’ve won 5 World Cups, in 1958, their potential was still untapped. Brazil typically crashed out of the World Cup in the knockout rounds, and the headline writers of the day wondered whether this World Cup would be different.

But Garrincha helped change that unlucky streak. He sat out the first two games, but starred in Brazil’s key matchup against the Soviet Union. From there, he played every minute of the remainder of the games, helping the team reach the final game against Sweden, which it won 5-2,  capturing its first World Cup.

Former Wales international Mel Hopkins faced off against Garrincha in the tournament. He later told the BBC of Garrincha, “when he stood and faced you, his legs went one way and his body the other. There’s no doubt about it, he could have been declared a cripple. But my God could he play.”

“There’s no doubt about it, he could have been declared a cripple. But my God could he play.”

For all of Garrincha’s artistry with the ball, he wasn’t the only star. It’s impossible to mention Garrincha without mentioning Pele, the famous soccer star who is to the sport what Babe Ruth is to baseball. The 1958 World Cup was also Pele’s debut, helping to score three goals in the World Cup final.

Pele and Garrincha subsequently formed a tandem to lead Brazil’s forward line. The two were a study in contrasts. Pele was determined, always seeking to improve, and always looking to score. Garrincha, on the other hand, was consumed with having fun; he thrilled in dribbling as much as scoring. Pele abstained from alcohol, Garrincha ate and drank like the factory worker he once was. Pele was dubbed “the king,” but Garrincha was called,“the people’s joy.” One was respected, the other adored. Together they were unstoppable.

Garrincha and Pele.

By 1962, for Brazil’s next World Cup, the duo seemed unstoppable.But in the second game, Pele suffered an injury serious enough to take him out of the tournament. From then on, Garrincha carried the team. He scored four goals and carried Brazil to the final, where they won their second consecutive World Cup, and Garrincha was crowned the World Cup’s Best Player.

When the team returned to Brazil, Garrincha was treated like a god. Songs were composed in his honor; babies were named for him. They called him “the angel with bent legs.” But at heart, Garrincha always stayed a small town kid, and due to his lack of education, Botafogo’s directors took advantage of him, paying him less than his teammates.

Eventually, his playing style took a toll on his body. Because of his bent legs, his knee cartilage tore apart due to the constant wear and tear of his dribbling. By the time he stepped onto the field for Brazil’s first game of the 1966 World Cup, he was constantly in pain.

He retired in 1969, having won three Brazilian championships with Botafogo, and two World Cups with Brazil. He scored 249 goals in 579 games. Soccer magazine FourFourTwo would rank him eleventh greatest player of all time; FIFA would rank him the seventh.

After he retired, like many professional athletes, Garrincha struggled. A nationwide star, he had no real skills except playing soccer, and he didn’t know how to handle his money. He soon succumbed to alcoholism, and fell back into poverty.

In January 1983, after a morning of drinking, he collapsed. He was rushed to the hospital where he died. He was 49.

The wake was held at Botafogo’s stadium, where his coffin was draped with a flag with the club’s crest. One of Garrincha’s family members tore the flag off, incensed over how the club had treated Garrincha. A fight almost erupted before someone interceded: Nilton Santos. The long-retired great defender had come to say goodbye. He covered the coffin with the green, yellow, and blue flag of Brazil.

The day of the funeral, tens of thousands lined the streets. They bid goodbye to a Brazilian legend whose brilliant bent legs and feints and swivels had brought joy to his countrymen’s hearts. They watched along the side of the road as the funeral procession made the journey from Rio to a modest cemetery 45 miles away in Pau Grande.

Q&As Uncategorized

Community Roundup: New Accomplishments, Post-Diagnosis

Getting married. Writing a book. Visiting Norway. These are just some of the things our readers have done after being diagnosed.

When you’re first diagnosed with a health condition, it can sometimes feel like the end of things. But even in the face of challenges, the nature of being human is to continue, and to persevere.

That’s why, for this week’s Community Round-Up, we asked Folks‘s Twitter followers: What’s something you never thought you could accommplish when you were diagnosied, that you now do?

The answers we received ran the gamut, from people telling us about how diagnosis spurred them to get married, travel new places, and finally sit down and write that book they were thinking about. But other responses we got were deeply honest and human, explaining that, for them, diagnosis didn’t have many bright sides, and we thought it was important to include those too.

For next week’s roundup, we’re asking our followers“Some people identify as disabled. Others don’t. How do you identify and why?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.

Creative Commons photo by Kristoffer Trolle. Additional reporting by Josh Andrew.

Community Roundup Uncategorized

Community Roundup: What’s Your Favorite Thing About The Disability Community?

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason. This week, we asked […]

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason.

This week, we asked members of Folks’ Twitter community what their favorite thing about the chronic illness and disability community was. What many of the answers we received touched on was this concept of ‘chosen family’ and how much online communities can help support someone who is dealing with a life-changing illness or condition.

Also, this week we’re asking our followers: “What’s something you never thought you could accomplish when you were diagnosed, but which you successfully do now?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.

Additional reporting by Josh Andrew.

Creative Commons photo by Lindsey Turner.

Q&As Uncategorized

How To Design A Room To Heal In

Lynn Goode began thinking differently about interior design after she was diagnosed with multiple sclerosis.

The texture of her bedspread, the way her walls curved, the ridges on her crown molding: When multiple sclerosis left Lynn Goode confined to the dream home she’d bought in Houston, Texas, but never had time to enjoy, she started to notice the details all around her.

Goode, who just turned 60, was first diagnosed with MS when she was in her late 30s and caring for four young kids. The diagnosis came after months of numbness, blurred vision and a drooping mouth. Long before MRIs were the gold standard for diagnosing MS, her doctor told herself to submerge herself in a hot bath and note what happened to her body; she soon became so weak she couldn’t stand up.

After her diagnosis, Goode recovered at home. Although already an art dealer, Goode had an epiphany as she lay within the confines of her four-poster bed, gazing out the window into her lush courtyard: our interior spaces matter. They help heal us.

Through MS, Goode found her calling. She opened Lynn Goode Vintage in Houston, where she revives and sells furniture from the 1950s to 1980s: pieces with a story, a soul. She’s driven to help others create comforting interiors and safe haven spaces, rooms that soothe and heal.

We sat down with Goode to learn more about soothing spaces, how they can help those with chronic illness, and how to create them.

Lynn Goode’s career path changed after she was diagnosed with MS in her late 30s.When you were recovering in bed, you decided to forgo T.V. and impulse purchases on QVC and focus on your surroundings. What did you learn?

I became aware of what brings pleasure in a room and what doesn’t. What colors work, how light works. It allowed me to think about rooms in a different way, as containing individuals, as a form of healing and containment. I got very interested in design after that. Previously I’d designed an art gallery and co-designed a bunch of different spaces, but then, I started collecting modern objects and furniture and being more aware of interior spaces and how they affect us.

What was it about your room that comforted you?

I was isolated at home. I couldn’t go outside, but I could see the flowers and plants in my courtyard through the windows in my room. The design brought the outside in. I remember we had azaleas out there, some ivy and potted plants. It was the greenery that was so pretty. There’s something about flower and plants, the growth, it makes you feel more alive. Also, the textures and the fibers of the fabrics the interior designer and I had picked out together—on the headboard, the bedding, the chairs—the beauty and variety of it all, and the pleasing feel of the fabrics, they all helped lift me up.

How do you help people create healing and comforting spaces?

Our home is such a personal expression of who we are. To create a space that feels like a safe, holding space, first I need to know what a person likes, what they gravitate toward, what they enjoy, what calms them. I use a lot of different textures. For example, I like to use a sheepskin rug or a heavily textured shag, some type of thick rug, and pair that with more streamlined or structured furniture. And then always, in every space, I put a great, big reading chair. It could also be an arm chair and an ottoman.

What about light? What’s more soothing, lamps or overhead lighting?

You need a balance of both. It’s important to have light at different levels. That helps soften a room. I like candlelight and table lamps too.

And what about colors? Are certain ones better for healing?

Colors that have always been associated with healing are yellow or white, pure light. But blue can be very tranquil too, because it’s sea and sky.

Colors that have always been associated with healing are yellow or white, pure light.

Why should we also have plants inside our home?

Live plants are the most important; they filter the air. Ferns are really good at absorbing and recreating a positive inner space.

What are the top three things every healing room should have?

Color is an important consideration when designing rooms to heal in.

A nice rug. A nice rug grounds a room. Interesting light, and by that, I mean a light fixture or lamp that’s sculptural, that has an interesting design. And then a mixture of textures. For example, nubby, textural fabrics with smooth velvets or silk. Different woods. Every room should have some wood, some glass, some steel and an upholstery.

How do you think your diagnosis has contributed to who you are today?

Having a major– and at that time what could have been considered life-threatening–illness in my late 30s, just when I was getting my kids a little settled, it was completely life-changing. It changed everything—the power structure in my then-marriage, my outlook on life. I felt compelled to travel as much as possible because I didn’t know how long I’d be around for. I thought to myself, “no, this didn’t happen to me, this isn’t supposed to happen.” But, it also led me here, to this place where I feel like I’m helping people. Whether it’s a chronic illness, stress or even trauma, everyone struggles with some issue, and everyone can benefit from a comforting space. For me, it took a while to get to a place where I wasn’t panicking. My grandfather had what we now know is ALS, and he died within two years of being diagnosed. But eventually I was able to get to a place where I said to myself, “to heck with it, live.”

Whether it’s a chronic illness, stress or even trauma, everyone struggles with some issue, and everyone can benefit from a comforting space.

Anything else you want to add?

Over the years, I’ve thought about why I gravitate toward older furniture, and I’ve realized a lot of it has to do with my MS. The furniture I find and restore is built well. It still has a lot of good years in it, but it might be damaged. There’s a metaphor there. To not discard or discount something, or someone, because of an imperfection. Furniture—and people—they can both be restored and renewed, they can both be given new life.

Profiles Uncategorized

This Pale African Beauty Is Challenging The Stigma Of Albinism

In Nairobi, where albinos are persecuted and even killed for witchcraft, a 19-year-old model with albinism competes to be Kenya Miss Universe.

There’s one thing 19-year-old Lucianah Nyawira can’t understand about Kenyan society: why her fellow citizens seem to prize white people, yet she is so stigmatized.

The beautiful young woman with albinism, who is an aspiring model in talks with a top model agency to head to Paris, has been subject to abuse for most of her life.

“I don’t get why Kenyans always like white people so much…[white people] are always given privileges, everyone wants to be associated with you, why don’t they want to be associated with me and I’m white too? That is the irony in all of this.”

With her unusual loveliness, Nyawira is a natural beauty contestant in Kenya.

But the university student, who is now in her third year, has some insight; after all it’s a question she’s been grappling with for two decades, starting when her father kicked her and her mother out of the house just after she was born.

“When I was born my mum was newly married and my dad was a tour guide, so most of the time he wasn’t home. I was born, I’m white and both of them are black and he doesn’t know about this albinism thing so my dad was like ‘You cheated on me with a white guy’, and he chased her away.”

They moved in her with her grandmother, in the rural county of Kirinyaga in central Kenya, where things scarcely improved.

“People were coming, older people and all, telling the family I’m a curse to the village and to the family. It was really tough but I really love my mum because she’s a strong woman, and my grandmother – they never listened to all of that.”

Nyawira applies her make-up in her dorms.

For the duration of her life, Nyawira has had to listen to myths of how people with albinism are a curse, referred to as ‘zeru zeru’ – which means ‘white ghost’ in Kiswahili. She is also often called ‘pesa’, a Kiswahili word for ‘money’, and threatened with kidnap to neighboring Tanzania. In East Africa, where albino body parts are used by witch doctors touting medicine produced from them as a tonic for good fortune, a complete set of body parts can fetch as much as $75,000, according to the International Federation of the Red Cross.

“People will always call me funny names. Some will even see you walking with your friend and they pull your friend aside.”

A few years ago, Nyawira’s friend was warned she was inviting a bad omen into her life.

“My friend took it in and we don’t talk anymore.

“I used to cry every day when I was young. Most of the mothers never wanted me to play with their kids.”

On the catwalk.

But Nyawira, who credits a supportive family including her two half-sisters and step-dad with much of her confidence, has let very little come between her and her dreams.

She fits in studying diplomatic relations at Nairobi University around modeling shoots and a social media campaign to raise awareness about what it means to have albinism – educating people on facts like how albinism is not contagious.

“I want to be a diplomat, I want to make it in my modeling life, I want to be a good mum, I want to start my clothing line. I have so much stuff to do.”

She is currently negotiating with eminent international modeling agency Elite, which has represented models like Naomi Campbell and Gisele Bundchen, to go to Paris in July. Nyawira says the ‘albinism’ label is a difficult one; she embraces her genetic condition, a mutation of several genes which causes a lack of pigmentation, but she says that is just one part of her.

“Of course I can’t run away from being defined by having albinism. You can define me as a person with albinism but don’t treat me any differently because I have albinism. Yes, I have albinism, but don’t favor me. Yes, I have albinism, but don’t discriminate against me.”

Nyawira prepares with fellow contestants of Kenya’s first albino beauty pageant.

Though she concedes it has not been easy to forge ahead in the notoriously brutal world of high fashion, where appearances triumph above all else – even before issues of culture, race and health come into play.

“Most of the times when it’s African attire, the designer is like yes Lucianah you’re good, you have a beautiful body and you can do well but this is an African outfit, people will say we are not embracing the African heritage. People will say ‘Why are you giving the white people our African clothes?’.”

Nyawira was told by judges to leave one model casting call, while another time there was a critical public response to one of her photo shoots, which now number more than 20 across five different Kenyan publications.

“People were saying: ‘Why are you dressing a white girl in African attire? That is still colonisation. I really felt bad. Sometimes I just feel like maybe I should just finish college and go out country to the US, maybe this is where I can feel comfortable. But then I’m like ‘No, this is my country’ but it’s a very big population, how do I explain to people I’m not white? How do I convince African designers I can do African whatever?”

How do I explain to people I’m not white? How do I convince African designers I can do African whatever?

Apart from the limitations she encounters from other people, however, Nyawira says she faces few others due to her condition. Like others with albinism she has to be vigilant about wearing sunscreen and her vision is poor; she wears glasses much of the time and must sit in the front of her lecture theaters. But it poses no real interference with her modeling, apart from needing the intensity of the camera flash dialed down.

And she is hopeful that things will improve for those with albinism in East Africa. Nyawira says about half the time people accept she has albinism while the rest of the time people mistake her for a ‘mzungu’, the Kiswahili word for white person – but in her childhood very little was known about her condition. Kenya now has its first high court judge with albinism and a Member of Parliament with albinism, some of the trailblazers who are putting the cause of albinism on the map. Just recently, Nyawira competed in the world’s first beauty pageant for people with albinism and finished in the top 16 finalists of the Kenya Miss Universe pageant.

There is another potential social challenge Nyawira faces. While other barriers are breaking down in Kenya, women with albinism face great difficulties getting married. However, the defiant and articulate teenager doesn’t see this as a problem right now.

Women with albinism confront significant challenges in African society.

“Basically I don’t like men. In Africa, when you get married, you’re your husband’s property. The way your husband rates his house, his car, his farm, you’re among that. You’re the one to clean, cook – the role of the woman is to give birth, wash, cook and satisfy the man. I really don’t like the African thing about marriage, that is the only part I don’t like about being African.”

Never defined by convention, Nyawira still wants her own children, and has even decided on how many: three girls and one boy.

“I want to be a mother, of course. I love kids, I can be a mother even without getting married. I want to adopt a kid with albinism.”

Profiles Uncategorized

Changing Ideas About Autism In The Developing World

Mary Amoah and her beautiful daughter Renata are challenging preconceptions about what it means to be normal in the African nation of Ghana.

Mary Amoah once thought witchcraft was behind her daughter Renata’s silence and odd behavior.

The Ghanaian mother said she did what any other mother like her would do – she prayed, she tried different ways to lift the ‘curse,’ and then she attempted to deny there was a problem.

Renata Kuffour was fine as a baby, as a toddler she started speaking a few words, but then, just before she was three, they disappeared. Mary, a teacher of 13 years, started to worry. She left her job and started trying to find out what was wrong with her daughter.

“She would hardly look at us. She had very poor eye contact she would want to play by herself, running in circles or spinning items…she would stare at her hand constantly,” Mary recalls, speaking from the family home in Accra, the capital city of the African nation of Ghana.

Renata wasn’t potty-trained,  so she couldn’t go to school. Mary took her to different hospitals but was always told her daughter just had delayed development.

Renata and her mother share a smile of understanding.

Renata and her mother share a smile of understanding.

She wouldn’t sleep, instead she would stay up singing. “That actually made me believe it was actually something to do with witchcraft,” Mary says. “Why would a child talk to herself, sing to herself, if she didn’t want to interact? Sometimes she might recite prayers but not really connecting with you, those things made me believe that it was probably something to do with spiritual forces.”

Acting on this belief, a desperate Mary took the advice of a woman who told her she could help her child by going to a market at the end of the day and collecting food scraps to cook for her. The woman told her doing this would mean Renata’s spiritual destiny would be safe, essentially lifting a curse off her.

“I am educated,” Mary says.”[But] I believed all these things and did [them].”

Why would a child talk to herself, sing to herself, if she didn’t want to interact?

It wasn’t until a friend visiting from the United States suggested Renata had autism that Mary realized what was happening with her five-year-old. She joined 52 different groups on Facebook to learn about the condition, which often results in delayed development and impaired social interaction. She also began to speak to other mothers with autistic children. It opened Mary’s eyes. In Ghana, she realized there was a vast population of undiagnosed autistic children, just like her daughter. 

It wasn’t easy being told her only daughter might not be able to work, that she may need help for the rest of her life, Mary recalls. But, unlike many other families in Ghana where those with disabilities are hidden or rejected, Mary decided to take action. She wanted her daughter to be able to be helped and accepted by Ghana’s conservative society.

In order to support her daughter and other children like her, nine years ago, Mary started working at a support center in Accra for children with speech and language difficulties, like Renata.

The center supports children with a range of speech or communication issues, taking in children with disabilities like autism, Down Syndrome, cerebral palsy or hearing impairments, for example.

Renata plays with her mother, Mary.

Renata plays with her mother, Mary.

As the center coordinator, Mary and her colleagues advocate to bring parents together to encourage them, and let them know that as difficult as things may be “it’s not a dead-end situation”.

This was a lesson she learned in the USA, when she was offered a place on a program for parents of autistic children at the Autism Treatment Center of AmericaWhile she got a scholarship to attend the Massachusetts center in 2013,  friends and family rallied together to pay for her airline ticket. The program taught her autism isn’t a ‘dead-end’ diagnosis, and that the parent is an autistic child’s best resource. She also met other parents in the same boat who she can still call on for  support and advice.

Coming back from the program she was inspired to take on its messages, and share them with other parents. “If the parent understands the condition, they are in a better condition to support their kids,” says Mary.

With all the support, love and work with Renata, now 13, she can sit quietly and follow her parent’s simple directions.

Mary calls her over for a kiss, and she obliges, then goes back to her seat. It’s her favorite spot, because the foam has compressed where she has sat over the years, allowing her to literally leave her mark on the space. 

Every now and then, Renata — now a beautiful teenager with big eyes and a warm smile —  will start humming, and that hum will build into a song. She will laugh, bounce in her seat, and then get up to wander into the next room, or spin around in a circle.

Mary watches on, smiling. “If she’s happy, I’m happy,” she says.

Renata and her family.

Renata and her family.

In most ways, Renata’s family embodies what Mary and the center advocate to those who have children with communication difficulties: the whole family is involved and responsible for her.

Mary’s husband, Benjamin Kuffour, is a teacher at a boarding school in Accra. The family lives in a large house on the school campus. The lanes are lined with trees and the family has their own large, tranquil backyard.

Renata’s older brothers, Charles, 18 and Emmanuel, 16, will take her on daily walks, while the family takes turns taking her to church. They also support her in her specialized diet -gluten and casein- free. She was put on the diet in 2013 and since then it has helped with Renata’s concentration and stabilizing her moods, she now sleeps well and is a lot calmer, Mary says.

Like many teenagers, Renata can be a fussy eater, Mary says. But she eats a lot of rice, vegetables, soup, chicken, and fish. She’s even starting to like fruits. “Once she sees every member of the family eating the same thing, she is motivated to try it,” says Mary.

Renata likes to run in circles, which can make people dizzy to watch. Still, the family likes to join in occasionally. “As long as it makes her happy, and she is not injuring herself, that’s fine with us,” Mary says.

Renata's family portrait, amongst the other women of her family.

Renata’s family portrait, amongst the other women of her family.

When she was younger, she didn’t like wearing clothes, which meant they could not take her out. But the family worked hard to get her used to clothing. She went through a stage of only wanting to wear tight things, so Mary dressed her in swimsuits. With sensory therapy–in other words, getting Renata used to things touching her body–she now wears glittery sandals and bold, African prints.

It’s important to Mary to dress her well, because it’s a way to project that her daughter is a person, not a disability.

“There was never a point where we saw her as a lesser person among us,” Mary says. “We have always cherished Renata, and supported her in any way we can.”

Aside from helping Renata with her day-to-day needs, Mary is focused on educating people on autism, where the condition has considerable stigma. Because she is not physically disabled, people struggle to understand why Renata is the way she is.

“That was one of the most challenging things we had to deal with,” Mary explains. “In Ghana, I think people are more used to ‘traditional’ disabilities. But when they have a child with autism and there is nothing to show on the outside, people don’t see it as a disability.”

In July, Mary took Renata to a playground, where Renata showed how happy she was by running in circles. Pleased with Renata wanting to play, Mary went to join her, grabbing her hands and playing ring-around-the-rosey. “Everyone went silent,” Mary remembers. Mothers in Ghana just do not play with their teenage daughters like that.

Renata’s autistic, but that is not all there is to her.

She explained to the shocked parents looking at her that Renata was autistic. As they left, one of the mothers confided to Mary that she had a child like Renata, but that she couldn’t handle him. When she brought her other children out to play, she left her autistic child at home.

It’s this stigma, this sense of hopelessness, that leads Mary to tell anyone who will listen about her “beautiful, lovely” daughter. She documents Renata’s life and their journey together on an open Facebook page.

Renata’s autistic, but that is not all there is to her.

Profiles Uncategorized

Deep Focus

Known for his massive, photorealistic portraits, American artist Chuck Close says he owes all of his artistic success to his limitations.

Known for his massive, photorealistic portraits, American artist Chuck Close says he owes all of his artistic success to his limitations.

If Chuck Close had his way, we’d all walk around with name tags and short bios pinned to our chests. While riding on the subway, he once failed to recognize an ex-lover whom he had lived with for a year only two years prior. The 75-year-old artist has overheard people he’s known for ages call him an asshole and a stuck-up snob after he’s passed them by yet again.

Close doesn’t mean to be a jerk. Despite being one of the most widely recognized portrait artists, he simply can’t remember faces. All the parts—nose, mouth, eyes—don’t add up to a memorable whole in his mind. The National Medal of Arts winner has prosopagnosia, or face blindness, a condition that likely affects around two percent of the population. “You move your head a half an inch, to me, it’s a whole new face I’ve never seen before,” he told RadioLab host Robert Krulwich.

Growing up in Monroe, Washington, Close realized that he couldn’t recall faces when, at the end of kindergarten, he still couldn’t identify his classmates. Faces weren’t the only things he had trouble remembering. Severely dyslexic, he also wrestled with deciphering words, and he never managed to memorize the multiplication tables. To say teachers weren’t as aware of learning disabilities in the ’40s and ’50s as they are now is something of an understatement. “They just assumed that you were dumb or lazy,” Close said in a Brooklyn Rail interview. (Close never even heard the word dyslexia until the 1970s when he had children of his own.)

Photo by Joe Wolf.

Photo by Joe Wolf.

But from a young age, Close had art. When he was five years old, he asked for an easel for Christmas. And so his father, a sheet metal worker and tinkerer (he invented the reflective paint used on airstrips), built him one. Next he asked his parents for a Genuine Weber’s Oil Color Set that he discovered in a Sears’ catalog. “I can still, to this day, smell the cheap linseed oil in the tubes of paint,” Close recalls in Martin Friedman’s book, Close Reading. “They were fat tubes, not little skinny ones. I knew, even then, that the little skinny tubes were for dilettantes.”

By the time he was eight, the precociously determined artist was painting still lifes, landscapes, and best of all for young Chuck, nude models in a private art class. The experience made him the envy of the neighborhood, and solidified his destiny. As he said to Tilda Swinton in BlackBook, “I was drawing nude models at age eight, so I thought, ‘Why would I want to be anything else?’”

At school, his art skills worked as a social and academic lubricant, helping to smooth over the fact that he couldn’t keep up with the three Rs in the classroom or the other kids on the playground. In addition to his academic struggles, lifelong neuromuscular problems kept him from running or playing catch. To impress his classmates, he’d draw pictures of World War II airplanes and caricatures of their teachers. To show his teachers that he cared, he’d create elaborate art projects, like a twenty-foot-long mural of the Lewis and Clark Trail that he made for a history class.

Everything in my work is determined by my learning disabilities.

Despite his obvious focus and talent, Close’s eighth grade counselor told him to not even think about college and to set his sights on trade school or body and fender work instead. Close ignored that bunk advice and enrolled at the local junior college. He signed up for courses that allowed him to write papers rather than takes tests, hired a typist, and dictated his essays based on his memory of the class lectures. From there, he went on to receive a bachelor’s degree from the University of Washington and a master of fine arts from Yale University. Reflecting back on his counselor’s terrible direction, Close offered his own wisdom on “CBS This Morning”: “Never let anyone define what you are capable of by using parameters that don’t apply to you.”

Chuck Close's self-portrait. Photo by John Weiss

Chuck Close’s self-portrait. Photo by John Weiss

A few years after graduating from Yale, Close, a former de Kooning devotee, bucked the current Abstract Expressionist trend and began painting his now iconic portraits, or “heads,” as he calls them. Flatten a face out, like in a photograph or painting, and Close can recall it with nearly photographic precision. Close believes that this talent, along with his face blindness, drove him to paint portraits as a way to commit the faces of people he cared about to memory.

“Everything in my work is determined by my learning disabilities,” Close told Krulwich. “I don’t think it’s a coincidence that having face blindness, I paint people’s faces,” Close told another interviewer. “It’s my way of getting closer to people. When I paint someone, it’s always a person’s face I want to remember.”

Close has worked in a range of media outside of oil paint, including jacquard tapestry, daguerreotypes, and more recently an inkjet printer. Over the years, he’s created painstakingly detailed likenesses of many famous faces, among them President Obama, Bill and Hillary Clinton, the composer Philip Glass, Brad Pitt (who thinks he might also be face blind), and fellow artists Cindy Sherman, Robert Rauschenberg, and Jasper Johns.

Confronting a Chuck Close portrait up close is an experience akin to face blindness. The artwork is so massive, often 9 feet high, that it’s impossible to take it all in at once. Your eyes are forced to move across each feature — from a colossal eye staring back at you, to its lashes, to the crow’s feet below. These large-scale portraits would be hard for anyone to tackle, let alone someone who has difficulty seeing the big picture. To work around this problem, Close breaks each image down into smaller, workable components. First, he photographs his subjects. Then he creates a grid on the photograph and a proportional grid on the much larger canvas, dividing them both into thousands of corresponding pieces. From there, he often spends three to four months (sometimes up to a year) building the portrait square by square. Close has described the process as similar to Lilliputians traveling across a giant’s face: They don’t know that they’re on a giant, but they can see every detail of the landscape as they travel.

Since his Brobdingnagian, hyper-realistic breakthrough piece, Big Self-Portrait (1967–68), Close’s work has evolved to more mosaic-like paintings, where each square is a more defined unit. His palette has also gotten much brighter, in part because of a catastrophic event that occurred 28 years ago.

Photo by Torbak Hopper

Photo by Torbak Hopper

At the age of 48, Close’s spinal artery collapsed, leaving him partially paralyzed from the chest down. He was determined to paint again, even if it meant spitting paint at the canvas. “Physicality is so important to me in my work. Pushing paint around, that’s what I do,” Close told the Guardian. “But whatever it takes to get there, I’ll do it. That’s always been my way of thinking.” When he was back in front of the canvas, Close said he felt like the happiest person on the planet and he’s been celebrating the joy of painting extra hard ever since.

Even after 70 some years of pushing paint around, his recent work is just as, if not more, vibrant than ever. Today, he zooms around his studio in a motorized wheelchair and moves his large canvases into position with a motorized easel. Intensive therapy eventually helped him regain partial use of his limbs, and he paints with a brush strapped into a customized brace on one arm, like Renoir. After a lifetime of dealing with rocks in his shoes, Close describes these now decades-old adaptations as “just some other rocks being inserted in my shoes.”

Perhaps surprisingly, Close wasn’t always conscious of the motivation behind his relentless drive to paint faces. It was only after painting portraits for two decades that he began to wonder why the subject still had such urgency for him and he started to connect it to his disabilities. “What kind of personal urgency do you have any more than dealing with your deficits?” Close said in a studio interview with White Cube. “That’s who am. I am that person with these major deficits. I spent years trying to hide it. But that’s who I am.”

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500 Miles Of Friendship On The Way Of St. James

Two best friends didn't let a pesky wheelchair get in the way of a once-in-a-lifetime adventure.

Two best friends didn’t let a pesky wheelchair get in the way of a once-in-a-lifetime adventure.

The small village of Los Arcos, Spain, appears like an oasis on the Way of St. James, a medieval pilgrimage route to the Santiago de Compostela that snakes for 500 miles through France into Spain. It’s a quiet town with a large stone church and a population of little more than one thousand people, but when Justin Skeesuck and Patrick Gray arrived there in 2014, they found themselves ambushed by a riotous strawberry festival… and dozens of deadly, rampaging bulls.

“I didn’t see a single strawberry,” Skeesuck chuckles. Instead, he and Gray found themselves barricaded in an alleyway, as the Los Arcos villagers tried to touch the horns of the bulls they’d let loose in the streets as they ran by. Skeesuck, who is in a wheelchair, could not easily dodge a bull, but Gray jumped into the fray. He attempted to psych the bull out by jumping left, then right, to no avail. The lathered, wild-eyed bull lunged forward and brushed against Gray’s hip, nearly puncturing his ribcage with the tip of its horn. In a frenzy, Gray scaled a fence to escape the bulls.

The lathered, wild-eyed bull lunged forward and brushed against Gray’s hip, nearly puncturing his ribcage with the tip of its horn.

“[Pat] nearly crapped his pants,” Skeesuck remembers. “I’m totally bummed the cameramen didn’t catch it on film.”

Those cameramen were accompanying Skeesuck and Gray film their first documentary, I’ll Push You. Set to debut in 2017, I’ll Push You follows the two life-long friends as they explored the Way of St. James together.

Justin and Patrick jog through the surf in Jamaica in 2007.

Justin and Patrick jog through the surf in Jamaica in 2007.

Gray and Skeesuck were born days apart and raised in the same small Oregon town of Ontario, near the Idaho border. They had a strong history of close friendship. Gray says, “We didn’t realize how intimate it was compared to other friendships because we’d had it our whole lives.” Throughout grade school, the two men had attended the same church youth group and gone on double dates together. Even their family ties go way back: Skeesuck’s great uncle was the best man in Gray’s grandfather’s wedding. After Skeesuck ended up in a wheelchair due to a progressive neuromuscular disease similar to Lou Gehrig’s–the technical name is multifocal acquired motor axonopathy–-the two began been planning a “guys’ trip.” Originally, this was meant to be something simple like a jaunt to Germany for Oktoberfest. But then Skeesuck saw a program on PBS about the Way of St. James. He told Gray about the route, and Gray’s response was immediate: “I’ll push you.”

A designer by trade, Skeesuck had worked with clients such as the luxury watch brand Maîtres du Temps and musician Greg Laswell. In his reinvention as the designer of their journey, Skeesuck’s first task was to commission a custom-fitted wheelchair equal to the rigors of the Appian Way: “an off-road baby jogger on steroids” that Skeesuck says took about five months to build. Approaching Terry Parrish, CEO of the San Diego-based video production agency Emota, to direct their documentary, Skeesusk and Gray flew from Boise, Idaho to St. Jean Pied de Port, France.

The next day, Skeesuck became the first man to summit the Pyrenees mountains in a wheelchair.

The next day, Skeesuck became the first man to summit the Pyrenees mountains in a wheelchair. Relaxing in his triumph, he stretched out on the grass with his eyes shut when a French Basque man slapped him on the face to brusquely wake him and get his attention. For years, the man had stayed near the hiking path on the Pyrenees to give pilgrims shelter, but he was astonished. He had never seen anything like this before. “The impossible is possible,” he told Skeesuck.

Over the course of the next 34 days, Skeesuck, Gray, Parrish, and their film crew slowly made their way across the Appian Way. They took the French route, starting in the north of France and making their way through Pamplona and León. But they did not make their way alone. At one particularly steep pass, 17 hikers carried Skeesuck’s wheelchair. But Skeesuck wasn’t embarrassed. “Vulnerability and asking for help in our country and culture is shown as a sign of weakness,” he says. “In my mind, it’s one of your greatest strengths, to be able to ask for help and receive help with grace and dignity… [I]t’s an invitation to share moments together and… an opportunity for community to blossom.”

Sometimes, Justin and Patrick needed to ask for a little help to achieve their goals.

Sometimes, Justin and Patrick needed to ask for a little help to achieve their goals.

But sometimes, Skeesuck received help he didn’t ask for. In the tiny Spanish town of San Juan de Ortega, the crew of I’ll Push You was having dinner when a woman made eye contact with him. A “little four-foot-nothing gal” with “no filter,” according to Gray, she bought an ice cream, walked up to Skeesuck, and started asking him questions in rapid-fire Spanish. Even though he didn’t understand a word she said, Skeesuck smiled and nodded… which the woman took as her cue to ram the entire ice cream cone into his mouth. “He was full-on violated by an ice cream cone,” Gray remembers. “It was just ridiculous.”

Other obstacles posed a more serious threat to the journey. When the wheel of his bespoke wheelchair broke, a medical supplier in Pamplona called friends of friends until he found an aluminum welder who fixed it in a day. With the help they found along the way, Skeesuck and Gray made it to the finish line: the cathedral at Santiago de Compostela in Spain.

All the routes from the Camino merge at the cathedral. When Gray and Skeesuck arrived, many of the pilgrims they had met along the way were waiting there to cheer them on, along with their wives. “I describe it as dying and going to heaven,” Skeesuck says. But it was also bittersweet. “On this pilgrimage, you strip away everything in your life, you just focus on where you’re going to eat and sleep. You’re not distracted by meetings or phone calls. When you finish your journey, you know you’re headed back to the chaos of life. … I still miss it deeply, and I know Patrick misses it deeply, and it will forever be something we hold on to.”

Patrick and Justin Walking by Statue


After pushing his friend across Europe, Gray says it’s improved all of his other relationships. “I’ve been watching his willingness to let others be his hands and feet, so to speak. And now I can let people in to be my emotional support. The impact is so profound there’s no way to do it justice. That’s one of the biggest impacts he’s had on my life: how I approach my marriage and my relationship with my kids. I acknowledge my imperfections and ask how I can be a better husband, father and friend. To facilitate that level of trust gives people the opportunity to love me for who I am—not for who I pretend I am—and gives them the opportunity to know me.” Both Skeesuck and Gray say their friendship has only deepened through their adventure, and they now see each other every day through their creative work and consultancy.



Already, fellow potential travelers have reached out to ask for Skeesuck’s guidance on how to make the same trip. Recently, an English man paralyzed from the neck down called him to ask how to complete the journey. On April 9th, a woman with severe rheumatoid arthritis told Skeesuck how she learned about his journey two years ago and had been training to hike the Way of St. James ever since. She was departing for Europe the next weekend.

When the documentary premieres in the summer or early fall of 2017, Skeesuck wants to reach even more would-be adventurers. “My hope is that people come away watching the film knowing their life is not defined by their personal circumstances. They can achieve anything they want to. Surround yourself with people who love you and want to support you. You just have to be creative.”