Posts

Disability Profiles

From Fashion Model To Ms. Wheelchair America

Ms. Wheelchair America 2018, Sheri Melander-Smith, channels her skills as an international model to raise awareness about people with disabilities.

For the past year, Sheri Melander-Smith has been traveling around the country in her role as Ms. Wheelchair America 2018. As part of the gig, Melander-Smith works to raise awareness about the way able-bodied privilege manifests itself in everything from attitudes to architecture. Her ceremonial crown has not made her exempt, and traveling is particularly challenging. “The micro-aggressions really get to you,” she says.

Maneuvering through the airport, using the restroom, boarding the plane – everything is designed for able-bodied people. Melander-Smith’s wheelchair has been damaged several times. And despite a law that mandates that it be ready for her at the gate upon arrival, her chair has been delayed due to inadequate staffing on more than one occasion.

Melander-Smith wrote a report about her flights for American Airlines – a corporate sponsor of Ms. Wheelchair America. The bigwigs walk the talk, she thinks, but in the end, it comes down to one-on-one interactions. “There were times when I was treated like cargo, and there were time I was treated as if I were a superwoman,” she explains. “People don’t expect a person with a disability to be strong, willful and independent, but I’ve learned to stand my ground.”

From ‘The Bold and the Beautiful’ to Business Degree

A glamorous photo of a young woman with longlegs wearing a white slip in a dramatic pose.

One of Melander-Smith’s early career glamor shots.

Melander-Smith is no stranger to travel. Before her paralysis, she flew to as many as three European cities in a single day as an international model. She walked the runways, did catalog shoots and appeared in magazines such as Glamour, L’Officiel and German Vogue. Later she relocated to L.A., where she acted in commercials and appeared in a few episodes of the CBS Daytime drama, The Bold and the Beautiful.

But Melander-Smith’s beaming smile, long raven locks and strong personality masked a disability that she has struggled with in one way or another for her entire life: Klippel-Trenaunay syndrome (KTS), a congenital vascular condition that impacts blood, tissue, and bone development in the extremities.

Many people with KTS have varicose veins or reddish-purple birth marks, but Melander-Smith only had one visible symptom. When she was born, one of her legs was slightly shorter and thicker than the other. She wore a fat-soled shoe to compensate, and when she was 18 years old, she underwent the second of two surgeries to correct the difference.

“Going through something that traumatic made me go inward and be more introspective,” she explains. “I realized that modeling and acting weren’t that important.”

Although it would not be discovered until she was an adult, Melander-Smith’s KTS also caused an aneurysm near the base of her spine. It ruptured when she was 25-years-old, causing temporary paralysis. Her father had died earlier that day, and Melander-Smith is convinced that the stress is at least partially responsible for what happened. While she recovered the use of her legs after several days, the experience changed something inside her.

“Going through something that traumatic made me go inward and be more introspective,” she explains. “I realized that modeling and acting weren’t that important.”

Miss Wheelchair America wearing a tiara and a purple dress.

Sheri Melander-Smith’s official headshot as Ms. Wheelchair America 2018.

Instead Melander-Smith put herself through UCLA, later relocating to Minnesota where she earned advanced degrees in psychology and business. She also married, had a son, and took a governmental job working with children with behavior problems and other disabilities.

The aneurysm, however, was still there, and over time, it began to affect her balance. In 2003, adjusting to life as a divorced mother, Melander-Smith began to stumble into walls, and on more than one occasion, fell flat on her face. A renowned neurosurgeon told her that he could remove it. The odds of complications were slim, he assured her, about two percent. But when Melander-Smith woke up after surgery, she was paralyzed, and she hasn’t walked since.

Finding Meaning in Modeling Again

“At first I was in denial, and then I was angry,” she explains. “Why would God heal me the first time, but not the second, especially when I had prayed for protection?”

Miss Wheelchair America poses with a little girl in a pink jacket who is also in a wheel chair.

As part of her official duties, Melander-Smith needs to inspire the next generation of kids in wheelchairs to never give up.

Although Melander-Smith wanted nothing more than to curl up in a ball on her bed, her son kept her going. From her rehabilitation center in Arizona, she took charge and ordered a hospital bed for her living room, ramps for the entrances and had an elevator installed. She also had a steering wheel accelerator put in her car. She wasn’t about to stop transporting her son to and from school.

Slowly, Melander-Smith began to get back out into the world. She started a website to tell her story and reached out to local community groups. The opportunity to host a local cable TV show followed, and she was soon speaking publicly about topics related to disabilities. Winning Ms. Wheelchair America is a culmination of those efforts.

“I had to make sense of why this happened to me, and the only way to do that was to live an even better life then before,” she explains. “I feel like I’ve always had a disability, but I’ve never let it stop me from living a full life.”

“I’ve always had a disability, but I’ve never let it stop me from living a full life.”

And while she is at peace with whatever happens, Melander-Smith still believes that she will walk again one day. After all, she never imagined as an awkward kid with one leg shorter than the other that she would go onto become an international model, so she knows all too well that the unexpected happens every day.  “I think that the science will catch up with me, but even if that never happens, I know I can face anything,” she explains.

In the meantime, Melander-Smith is working on her autobiography and refocusing on her non-profit, Living Forward, which will offer tips about how to build a meaningful life in the wake of personal loss, illness or disability. She thinks it’s a self-help niche that’s underserved.

Not to mention her artistic pursuits. Melander-Smith took up acrylic and watercolor painting more than a decade ago, and she just signed a lease on a new art studio. She is looking forward to putting brush to canvas after so many months on the road.

“When I paint, time gets very narrow and I get very focused,” Melander-Smith explains. “That’s where I like to be. It’s a nice ride.”

Disability Q&As

A Real-Life Wheelchair Superhero

Mohammed Sayed created Wheelchair Man to show kids with disabilities that they are capable of anything. If anything, Sayed's even more of a superhero than his creation.

Around fifteen years ago, Mohammed Sayed was injured in a bomb attack on his home in northern Afghanistan. He was five. Sayed, who goes by Mo, had his spinal cord injured in the attack, which permanently paralyzed his legs. Two weeks earlier, his mother had died of cancer. His father brought him to a hospital, left him, and never returned.

The hospital, run by an Italian NGO, allowed Sayed to live there. Around age nine he began finding ways to make money for himself. A natural entrepreneur, he taught himself how to fix cell phones, which had just started becoming popular in Afghanistan. He became the go-to cell phone repairman in the hospital. “I was probably the richest Afghan in a wheelchair making money off cell phones,” he quips. He had also taught himself English listening to BBC radio programs and chatting with hospital staff. At a school he attended nearby he rapidly rose to the top of his class.

Mohammed Sayed lost the use of his legs after a bomb attack in Afghanistan.

When Sayed was twelve, he was adopted by an American nurse he had met at the hospital. Together they moved to Watertown, Massachusetts, where he began attending public middle school. His natural ingenuity was nurtured in adolescence while attending NuVu, a private high school in Cambridge that encourages invention. Soon he was inventing adaptive products for wheelchair users. Some of them he showed to President Obama at the 2015 White House Science Fair (the move to America, doctors tell him today, also saved his life: had he not had the spine-correcting surgeries he did once he arrived, he would likely not have survived past eighteen).

For the past two years, though, Sayed has focused his energy into a different kind of invention: a comic book about a disabled superhero called Wheelchair Man. Though he had no experience in storytelling or illustration (a family friend draws it), the comic has taken off, garnering coverage from news agencies around the world. The U.S. State Department has even taken an interest, going into collaboration with Sayed. The comic, which he intends as a series of various disabled superheroes from the developing world, is a product of RimPower, a disabled empowerment non-profit which Sayed, now 21, founded. The point of Wheelchair Man, he says, is not entertainment but empowerment. We reached out to hear more.

On your own as a boy you were incredibly self-reliant, teaching yourself English and running a small business. How, though, did you learn to live with your disability?

I never let me being in a wheelchair define who I was. I don’t know how that happened. I was just hopeful. I believed I could accomplish things. What makes me different from a lot of other people is that I never really cared about how others perceived me. I had learned from a young age to do what I like and to believe in myself. I always thought I was just as capable as anybody else. The only thing I didn’t have was my legs.

I had learned from a young age to do what I like and to believe in myself. I always thought I was just as capable as anybody else. The only thing I didn’t have was my legs.

What did your classmates in Afghanistan think of your disability?

In the beginning of my schooling, I had a friend who had lost an eye and a leg through an explosion. We started school together and we used to get bullied. But if you are number one in your class in Afghanistan it is basically like you are the teacher. In fact, when there was no teacher, instead of hiring a substitute they had the student who was number one fill in. There were 62 students in my class. Once I started moving up the ladder kids started respecting me. They began to judge me by my knowledge instead of my appearance.

How did the idea for Wheelchair Man enter your mind?

I had long realized there were all these other superheroes but nothing that involved wheelchair users or disability. Then one day I went to Comic-Con in Boston. Lot of people go. Attendants dress up as their favorite superhero. I saw nothing that represented people with disability. I decided then that having a disabled superhero would be a great way of mentally empowering children with disability.

Wheelchair Man is based in part on Sayed’s own life in a wheelchair.

How did you get started on the project?

People said, “You’ve never even held a comic. How are you going to write a comic book?” But I didn’t see it that way. It was more than just a comic book character. I see the project as something that’s trying to challenge the status quo that people in wheelchairs are not capable of achieving great things.

I see the project as something that’s trying to challenge the status quo that people in wheelchairs are not capable of achieving great things.

I took a two week course to learn about comic books. I know my story best so wanted to base it on that. The goal was to create five original superheroes. Wheelchair Man is from Afghanistan; Wheelchair Boy is from South Africa; Wheelchair Girl is from India; and Wheelchair Woman we are hoping will be from Ukraine. These are the sorts of countries where people with disabilities are looked down upon, marginalized and stigmatized. The way they are viewed is really unfair. They don’t have the kinds of opportunities we have in the U.S., even though we have problems here.

On July 25th, I’m releasing Wheelchair Man Book Two. We’re introducing Captain Afghanistan, who is not in a wheelchair. This story is based on my best friend’s story, the one who lost an eye and a leg to a landmine. Each superhero will have three books.

What are some of Wheelchair Man’s superpowers?

He makes criminals see the consequences of their crime before they commit it. He can also fly with his wheelchair, which is kind of its own character. It also has other powers, which he’ll discover throughout the series. He will, however, never touch weapons or use violence. If he touches any weapon, he will lose one of his powers. His main powers are psychological. He’s all about making the world a peaceful place.

Who is the villain?

In the first book we don’t have a specific villain; you’re just learning about the characters. Because of the situation that this boy has been through–he has lost everything– and the way that society views him you could say that the whole society is the villain.

Sayed meeting President Obama at the White House.

What kinds of reactions has Wheelchair Man provoked?

It’s been absolutely amazing. RimPower’s vision is to empower wheelchair users and inspire the general public. To that end we’ve been working with the U.S. embassy in Kabul who translated Wheelchair Man into Farsi and Pashto then distributed 1,500 copies to homeless shelters, orphanages and schools throughout Afghanistan. I also gave a live stream talk to nearly a thousand people throughout 23 provinces in Afghanistan. We have also worked with organizations that have a similar vision in Cambodia and now trying to figure with the the State Department how to expand elsewhere in the world. I have also visited schools here in the States and receive regular messages through Facebook from disabled readers. I want disabled kids to know that anything is possible, that they are superheroes themselves–they don’t have to look up to anybody else. It’s humbling to see the impact.

I want disabled kids to know that anything is possible, that they are superheroes themselves–they don’t have to look up to anybody else.

How much in Wheelchair Man is based on real-life experiences?

All our superheroes are based on real-life stories; they’re nonfiction superhero books. The whole purpose of the first issue is to introduce the real humans in it. Wheelchair Man starts using his superpowers only in the second book. In Afghanistan when a child or a young person loses their family the Taliban or some other crazy group takes advantage of those children and brainwashes them into thinking that all foreigners are enemies or that the soldiers are here to kill our families. It has always been my dream not only to empower these people but to send a message that if we can be taught how to hate, then we can certainly be taught how to love.

In my case, before coming to the U.S., my heroes were all warlords. I believed they were there to protect us. I looked up to them. Then I came to the U.S. and I learned about Gandhi and Nelson Mandela. All these people use peace to fight for peace and that’s my dream. That’s why my characters are based on real life stories. There are real heroes in the world that we need to celebrate rather than just creating superheros that are based on bugs. It’s a mixture of fiction and reality.

Disability Profiles

A Spinal Cord Injury Can’t Stand In The Way Of A Great Mom

When Debbie Soliz first got injured, she was told motherhood might never happen for her. Now, she dedicates her life to showing other women that anything is possible.

“He learned I couldn’t pick him up,” Debbie Soliz says. “So we fixed it so my son Allan could climb on a chair and climb on my table.” She points to the table attached to her wheelchair, which Allan broke at age 8. “And he would say, ‘mom, this is my place. And I’m not going to stop sitting here until it breaks’.”

Now 64, a social worker in Davis, California for the past 25 years, Debbie is an expert on being a mother with a spinal cord injury, or SCI.

At just 15, she had her accident, dared by her peers to jump off a cliff into the ocean at Corona del Mar in 1969. The fall left her a paraplegic, spiraling her from dark beginnings into a bright future as a mother, advocate, and social worker dedicated to perinatal care and women’s reproductive rights.

Debbie, Allan, and Dani

“I was stunned by my accident and by the disability,” she says. “For 3 years, I was not myself and I decided that I would just stay home and there were no plans for me to finish high school or go to college.” With a push from her mom and the companionship of an SCI rehabilitation group, Debbie became determined to accomplish all the things that she had wanted before the accident: including sex and children.

“We learned about sexuality, not just sex,” she says. “And we learned that we could get pregnant, and I liked knowing that.”

During this time, information available on the risks of childbirth for SCI women were quite extreme. “It all said that you are going to die if you get pregnant, all the information was scary stuff.” But it turned out these risks, put forward as only applying to paraplegics, actually applied to all women. It was a turning point for Debbie.

“I had felt separated from women for the longest time,” she says. “That I wasn’t part of the women’s movement, the feminist movement, that I wasn’t part of that because I was a disabled woman, that I was so different. Then suddenly I included myself in that group. And when I included myself in that group, I felt empowered.”

It changed the course of her professional career. After first obtaining degrees in animal behavior, she switched gears into social work, finding a passion for reproductive health.

Over the years, Debbie has worked with countless women: writing protocols on what to do if a woman comes in with bruises, for example, and figuring out how to maximize the short time a social worker might have with a vulnerable woman to get her the support she needs. One of her greatest advocacy roles has been speaking with doctors and her peers about the ability of SCI women to give birth.

In 1984, she had her first child, and in 1987, she had Dani. Getting pregnant was no easy task, but Debbie and her partner were patient, and she was able to have two natural births.

Debbie and her kids today, at daughter Dani’s wedding.

Debbie reflects on giving birth as an SCI woman. “The most dangerous time is when the baby is crowning. I can’t push, physically I can’t bear down. I can only let the uterus do its work.” Both births went so fast because of this: no pushing meant that birth was like a cannon being shot. “The way [my partner] saw his son being born was through a camera, because in 90 seconds Allan was born.”

And just as Debbie adapted to her children, so did Allan and Dani adapt to her.

For example, because of her accident, Debbie has her hands in splints to help with grip and hand function. While feeding Allan a bottle as an infant, her hand would turn sideways before she could make it all the way to his mouth. He learned that this would happen and would turn his head lean forward so that the food would fall in his mouth. Her partner also made a special crib so that and Debbie could take her children in and out of the crib herself. Daily hacks in combination with intuitive children made all things possible.

Having small children wasn’t an ordinary experience for Debbie, but parenting, says Debbie, transcends disability. “There’s a feeling that [disabled women] cannot parent, that they physically can not do it,’ she says. “But parenting isn’t about physical care. Parenting is about teaching, loving, playing. So many things that I could do, that shape a child far more than diaper changing.”

Disability The Good Fight

Your Not-So-Secret Admirer

Born with a rare spinal disorder, artist Alyssa Andrews sends out custom Valentine's cards to strangers every year so that no one feels alone.

This year, Alyssa Andrews mailed over one hundred Valentine’s cards. Last year, she did the same. But as she explains to me in an interview, the 29-year-old illustrator based in New York City is not a Casanova, but an empath: She takes requests for custom cards, designs and creates them by hand, and mails them out to members of the queer community who need some cheering up over the holiday season, all free of charge.

While the holidays are touted as positive and fulfilling, for people who lack support systems or healthy personal relationships, they can feel overwhelming and isolating. As a queer woman who lives with a rare and chronic condition that impacts her ability to walk, Alyssa knows all too well the importance of human connection and kindness.

Alyssa Andrew in her New York studio.

An illustrator by trade, Alyssa has used her art as a way to connect with others for years, including strangers. “When I first moved to the city,” she explains, “I was really horrified at the way the homeless were treated. I used to buy coffees on my lunch breaks, or on my way into work in the morning, and write notes on them, and hand them out to folks.”

When tragedy struck her own community, Alyssa was motivated to spread love in the way she could do it best: through her art. “The card project wasn’t a far leap from what I was already doing for strangers,” she says, “but last year around this time, we lost a really valuable woman in our community to suicide, and folks were reeling from that. I looked at the card project as an opportunity to remind members of the community that they’re loved and thought of even when times feel really hard.”

When Alyssa began her Valentine’s project in 2016, she posted her offer in online groups for the queer community. What started as twenty responses from those local to her tristate area quickly grew to over one hundred requests, including from around the globe.

Some of Andrews’ card designs.

This year, Alyssa has had a similarly big response, with a common thread between those all of those whom reached out: Most everyone wants to know how they, too, can give back to strangers in need.

“I receive so many responses asking what I want in return for them, or how folks can repay me,” she explains. “It both warms my heart, and kind of breaks it–that an act of kindness anymore is almost met with suspicion of some sort. When folks are really wanting to give something back I always just ask that they do something nice for someone else. It can be big or small, like buying a coffee for the person behind you in line, or leaving your own little love note for a stranger somewhere.”

It both warms my heart, and kind of breaks it–that an act of kindness anymore is almost met with suspicion of some sort.

“I think it’s really beautiful that people reach out about doing things as well,” she says. “If the goal is spreading love, it’s all the better when it extends well beyond what I’m doing.”

In terms of craft and production, the artist developed a system that worked within the confines of her apartment space: First, she spreads big sheets of bristol paper on the floor and puts a grid out for each card. Then, she uses Prismacolor markers to create each design by hand. Once the design is complete, she cuts the card, records it as a “complete” in her spreadsheet, and prepares it for the mail, which her partner helps her organize and send out. Organization, Alyssa notes, is key to keep the project from becoming overwhelming.

“Believe it or not, the process is a lot like being a kid and coloring on the floor when you parents are being boring adults,” she jokes.

Last year, Alyssa survived her 53rd surgery. Born with Myelomeningocele, a rare and complicated form of a neural tube defect, Alyssa’s identity as a marginalized person exists in multiple planes: She is a woman, she is queer, and she lives with a life-long disability. For this reason, she understands all too well how important it is to show care and kindness to those around her, from her partner, to her coworkers, to strangers on the street.

Like others with Myelomeningocele, Alyssa was born with a “tethered cord” in her spine, meaning that a mass formed in her spine as she was developing in the womb. Now, she lacks a complete spine and lives with a tumor that has grown and pinned her spinal cord beyond its typical position. At 18, complications caused incomplete paraplegia. A decade later, Alyssa can walk again, but she lacks feeling in her lower extremities and her blood circulation is poor.

“I currently am fortunate to walk,” she jokes, “but if I had to describe it, I just look like I’m two-stepping to Jay-Z at all times.”  

I currently am fortunate to walk, but if I had to describe it, I just look like I’m two-stepping to Jay-Z at all times.”

For Alyssa, sending cards to her queer community over Valentine’s Day has a second layer of importance. “Even for folks with great support systems, Valentine’s Day is just such a heteronormative holiday,” she explains. “There’s not much visibility out there for queer people. With all the highlights on things like marriage equality and trans-visibility in the last few years, it’s often really disregarded how much mistreatment the LGBTQ community continues to face.”

Alyssa’s cards are not only custom drawn, but also include a personalized message. Some people request cards for themselves, in which case Alyssa writes them a note full of encouragement. But a surprising amount of people request cards on behalf of others, continuing the circle of kindness.

“This year, I was contacted by an individual who works with blind students,” Alyssa explains. “They were wondering if I’d make cards that they could then add braille to, which I thought was just awesome.”

Andrews hopes her cards will make lonely people in marginalized communities feel accepted.

Alyssa has no political agenda with her cards, but she does believe that marginalized communities need all the love and support they can get, given recent political movements. “I think that morale at the moment is pretty low in general, “she explains, “and there’s a lot of animosity and fear spreading all over the place. So if my cards do anything to kind of counter that, that’s certainly all the better.”

Alyssa’s medical history is a complicated one, but she refuses to let it define her. “There’s a lot of public misconceptions about my abilities; my intelligence; constant questioning of my body and what may have happened to it,” she shares. “I don’t often give the satisfaction of explaining myself to people, but I do strongly advocate against being used as anyone’s inspiration simply for being,” she explains.  

I think no matter who you are or what you’re facing, it’s so easy to feel devalued or unseen in the world.

“I think that’s really harmful and disrespectful to disabled folks… At the end of my life, if I’m known for anything, I hope that it’s for the things I’ve done in my life, rather than the fact that I woke up every day in a body people look down upon. You know,” she jokes, “I put my pants on just like anybody else: only if I absolutely have to.”

At her core, Alyssa is all about the positive actions she puts into the world.

“I think no matter who you are or what you’re facing, it’s so easy to feel devalued or unseen in the world,” she explains. “If my little project catches on in a way that helps people to feel seen, and know their value, I’m extremely grateful.”

 


.

Neurological & Cognitive Disorders Profiles

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.”