Chronic Illness Diabetes Disability Roundups

8 Chronically Ill YouTubers To Follow For Daily Inspiration

From muscular dystrophy to seasonal affective disorder, here are nine YouTubers showing what life with a health condition is really like.

Living with a chronic health condition can be a challenge, and sometimes you just need to look to others to be inspired by other people dealing with the same issues to keep going. In fact, official studies done on the subject have shown that health vlogs can be exceptionally useful as a support system for managing chronic illnesses.

With that in mind, we’ve put together a list of 9 of our favorite YouTubers, who are documenting life with a chronic illness with humor, heart, and honesty. Although the conditions they may be dealing with vary, what unites them is the fact that they are turning their health conditions into a way to support others.

Here are some of the most inspiring users of YouTube who are living every day with chronic conditions and documenting their stories.

We’re a Cool Fam (Marfan Syndrome)

“We’re a Cool Fam” documents the story of the Huffman family (Hans, Jessica and Alyster Blaze) who all suffer from Marfan Syndrome, a genetic connective tissue disorder with symptoms that can include scoliosis, arthritis, hypermobility and heart problems.

They’ve documented everything from the parents’ initial diagnosis to efforts conceiving Alyster Blaze. There’s even a vlog about seeing a genetic counsellor regarding Marfan Syndrome before they started the process. They documented every pregnancy test, including the first successful one.

What really inspires about the Huffmans, though, is the way they don’t let their illness get in the way of living an incredible life. Just check outtheir cruises and birthday parties!

Joe Joe (Lewy Body Dementia)

Lewy Body Dementia is a condition a lot of people might know about (Robin Williams had it) but few have seen with their own eyes, which in turn, creates stigma. That’s something Joe Joe tries to change by showing what life with his mother Molly is really like.

His channel documents everything from what life with Molly was like before her condition, to what she does now that she’s been diagnosed, including painting pottery and getting pedicures. It also unflinchingly documents the hallmarks of dementia like forgetting how to perform basic tasks, his mother’s anxiety of the unknown and and the condition’s progression.

Episode #55 was posted in 2018, and marked the passing away of his beloved mother. In the video’s description, he writes: “She went to battle everyday with Dementia for 10 years. She’s my inspiration and my strength to get through tough times. I hope my Mother, Molly will continue to help thousands, maybe millions of people understand more about Dementia, and give people strength to get through whatever life challenges they might be dealing with”

Joe also started Molly’s Movement, a foundation raising awareness for the condition.

Zach Anner (Cerebral Palsy)

YouTube user Zach Anner has more than 300,000 channel subscribers and 16 million views. His channel is a window into what living with Cerebral Palsy is like, and just how much you can accomplish with a motor disorder.

Outspoken, inspiring, and entertaining at all times, Zach is an entertainer at heart, and his channel features comedy skits, workout videos, and commentary on everything from his thoughts on accessibility at airports to what life is like with Cerebral Palsy.

He’s even been featured in other YouTube channels, like the Cerebral Palsy Foundation’s “Top 10 Things I Wish People Knew About Cerebral Palsy”, Soul Pancake’s “Pimp My Wheelchair” Microsoft’s demo of the Xbox Adaptive Controller.

He’s also written a book called “If at Birth You Don’t Succeed” and recently appeared in ABC-TV’s Speechless.

The Frey Life (Cystic Fibrosis)

Cystic Fibrosis is an inherited condition that affects the lung and other organs, making it hard to breathe. On the The Frey Life, the Frey Family address common CF misconceptions and show what it’s like living with the condition first hand, such as what it’s like flying with a feeding tube, how to take care of service dogs and the best ways to teach kids about CF.

But what really inspires about The Frey Life is the way the family documents the hard times of cystic fibrosis with poise and grace. They show what it’s like to have a a painful day, or one where you struggle to breathe.

What the channel teaches, though, are that these hard days just make you appreciate the good ones all the more. And together, as a family, the Freys have more than the share of those, which they’re happy to share with a large YouTube audience.

Molly Burke (Retinitis Pigmentosa)

Molly Burke is a motivational speaker and YouTube user who was diagnosed at age 5 with Retinitis Pigmentosa, a rare group of eye disorders affecting the retina and leading to blindness. It hasn’t stopped her one bit.

With more than 1.3 million subscribers and over 56 million views, Molly’s channel documents everything from what it’s like getting a tattoo as a blind person to how to describe colours to someone who can’t see. She also covers 4 years with her guide dog and ten things you shouldn’t ask a blind person.

Molly’s even had success beyond YouTube. She was recently featured in a Dove TV ad. She can also be found at her official website.

Glitter Glucose (Type 1 Diabetes)

According to the American Diabetes Association, approximately 1.25 million Americans have Type 1diabetes, but many people outside of that club never think about day-to-day life with that condition.

YouTube user Glitter Glucose posts about everything you never would have thought to ask when it comes to diabetes, and shows the lifestyle changes necessary after diagnosis.

Videos feature her own diagnosis story, thoughts on dating with diabetes and more down-to-earth advice, like why people with diabetes type 1 or 2 should always wear a medical ID in the event of a medical emergency.

Shannon DeVido (Spinal Muscular Atrophy)

Shannon DeVido is a diverse and inspiring comedienne, actress, singer and vlogger who suffers from spinal muscular atrophy, a degenerative condition which means Shannon has to use a wheelchair to get around.

Her channel documents days in the life of her condition, her stand-up comedy appearances all over the country, and, of course, her acting reel. Just her busy schedule is enough to inspire most viewers!

She does a lot more than just vlog, too. Most recently, Shannon starred in the series Difficult People, produced by Amy Poehler and Billy Eichner, which ran until September 2017.

You can also connect with Shannon through her official website.

Sarah Hawkinson (Seasonal Affective Disorder)

Sarah Hawkinson is a YouTube and fashion blogger who lives with Seasonal Affective Disorder, a mood disorder which is estimated to affect as much as 10 million people in the US.

Sarah’s channel documents her daily life, but also speaks out openly about living with the condition, offering practical advice for fellow sufferers who need to know how best to manage their depression.

Her channel covers things like diet, the relationship about social media and mental illness, common myths about the condition, and more personal content like her dealings with self-esteem issues as a fashion vlogger with depression and therapy.

It’s vitally important for people to understand so-called “invisible” illnesses and disabilities, and through her honesty and grace, Sarah Hawkinson makes seasonal affective disorder impossible to ignore.

Disability Essays Vision & Hearing Loss

Seeing-Eye Runner

For three days, I served as the sighted partner and guide for my friend, a blind runner, during a race through the Colorado Rockies.

Frequently runners along the trail asked Luanne Burke, “Are you blind?”

“Yes,” Luanne would reply.

“Totally blind?” they’d pry further, as if disbelieving a blind woman would be running past them on a single track trail.

“Blind enough,” Luanne would respond.

And yet, when I asked Luanne (5 days before the event) to be my partner for the TransRockies Run, a three-to-six day tandem adventure trail race through the Colorado Rocky Mountains, she jumped at the chance. “We live in a mobile world and when you aren’t a part of it, you’re really aware of it,” Luanne told me.  She confessed that my crazy proposal to run the trail race with me as her guide would quite possibly be her last chance to get onto the mountain trails and appreciate the pinhole images she could still see.

“We live in a mobile world and when you aren’t a part of it, you’re really aware of it.”

Luanne has been striking out on her own despite her visual impairment for a long time. She recalled the last hike she’d done on her own. Struck by how such a visually impaired individual could navigate on her own, one person on the Telluride trail asked her, “How’d you find your way to the trail from the hotel?!” And perhaps just as many of us overcome our own obstacles, Luanne answered, “I went uphill and asked questions along the way.”

Luanne was born with retinitis pigmentosa, a genetic disease that results in eventual blindness.  One’s vision shrinks from the outside in. Two out of three of her siblings have the disease and are now completely blind. She has always had very poor night vision. In high school, Luanne began to feel the effects of the disease as her peripheral vision decreased.  By the age of 19, she was diagnosed as legally blind.  It didn’t keep her from continuing to compete against able-bodied athletes and winning her age-group in multiple 5Ks and triathlons. When she was 28, she rode a tandem bike across the U.S. with a below the knee amputee woman. In her 30’s she was a member of the U.S. Para-alpine-ski team and a world champion in four disciplines three years in a row. Now, at 56, Luanne is holding onto the speck in her left eye that allows her to still see…very little.

Luanne, a short distance runner, had never run over 13 miles at one time.  The three days of racing at an elevation above 9,000 feet included Day one: 20.8 miles, 2500 feet elevation gain, hot, sandy, rocky, gravel; Day two: 13.4 miles 3200 feet; Day three: 24.3 miles 2700 feet climbing.  Our bags were transferred to each new stop. Our tents were set up upon arrival at camp. Delicious and nutritious meals were provided for breakfast and dinner. Hot showers were even provided.  All we had to do was run. Easy, right?

When Luanne announced that she was doing the race, one of Luanne’s friends, not surprisingly, asked her, “Why are you doing this?”

To which she responded, “Because someone asked me.”

“Would you jump off a cliff if someone asked you?”

“If I had a good bungee, yes,” replied Luanne.

“Would you jump off a cliff if someone asked you?”

“If I had a good bungee, yes,” replied Luanne.

A bungee was just what I was.

A bungee was just what I was. There were three ways by which I guided Luanne.  For the wide flat dirt roads, she ran alongside of me holding one end of a nylon tether (the other end I held).  On rare stretches, she ran beside me following simply my vocal commands and sometimes loosely resting her hand on my arm. For the single track inclines and flats, she held on to a stretchy bungee-like cord that was looped through my camelback, allowing only a foot between us. During the steep descents and technical terrain, I took her arm and guided her. When the soil was very loose, she followed the shadow of my feet in front of her and my verbal cues.  By the end of the day, these cues became harder to time appropriately. A few times exhaustion beat me to the punch and before I could say “tree root” she’d tripped.

Blind runner Luanne Burker and her sighted partner, Amanda McCracken, on the TransRockies Run. Photo: Raven Eye Photography

Frequently participants passed us saying, “You two are so sweet,” or, “You are such an inspiration!” Just wait till you get in our way, we joked. We’ll invite you to a fast race and then we’ll see who’s passing who.  Both of us had to temper our competitive natures with patience as we navigated down loose gravel, around rocks and holes, and along steep drop-offs.

The “You’re so sweet” comments, while well intended, seemed condescending to both of us.  I grew frustrated when I noticed people engaging in conversation with me but not Luanne while she stood right next to me. But Luanne understood them.

“Sometimes your job as the blind person becomes making others feel comfortable. They see blindness as a vulnerable state of being. And in some ways it is. We have a very basic instinct to protect ourselves. So it’s not surprising blindness brings up fear in people. Not necessarily fear of the person, but a fear of the possibility of that becoming them. People often say I just don’t know what I would do, if that were me.”

“Sometimes your job as the blind person becomes making others feel comfortable.”

“Society similarly responds to the elderly in our culture; we push them out of sight because we’re afraid of our own death, our own vulnerability. I think, that is why people who are comfortable with themselves are comfortable with somebody who is blind or old. Because they know they could handle it.”

Those who were unnerved by the idea of a blind woman trekking the same trail wanted to help. They all seemed to have an idea for us. “Use this stick to help you with balance,” one suggested. Another thought we should try using the stick a different way. People genuinely wanted to be a part of our adventure.  And yet it was hard for anyone to have the same perspective unless they were in our shoes.

What was tough for a seeing person was not necessarily tough for a visually impaired person, and vice versa. Runners were impressed with how quickly we scooted up to Hope Pass (3,200 feet incline in 5 miles), but it was the steep and technical 8.5 mile and 3300 feet descent from the pass that was tough. There were long stretches of navigating around big rocks and areas where the water had washed away the soil, creating deep crevices. We were probably ahead of 100 people when we got to the top of Hope Pass, but by the time we finished, they had all passed.  However, it was on this difficult descent where we experienced the most lasting impressions during the trip: the aspen trees.

When Luanne was a little girl, her father took her and her three brothers hiking in the Rocky Mountains. Aspen trees visually trigger memories of those special trips with her now deceased father.  Much of our descent from Hope Pass wove its way along a creek and through the rustle of hundreds of Aspen trees. At certain moments the light would hit the still green Aspen leaves and chalky bark in such a way that Luanne could catch a glimpse. She wept when she told me that those Aspen trees were the image she surely would take away from our experience.

“I never realized how precious images in nature would become to me.”

Luanne is the professional artist. She has moved from painting to sculpture as her vision further disappears. So, it’s easy to understand why it mattered to stop along the trail to rest the giant columbine flowers in her hand for her to see through her pinhole. Luanne’s TransRockies trek was a visual collection of memories. A series of moments capturing and storing silhouette images like the skyline and the Georgia Okeefe-esque fence along our route. Like an old fashion camera, her vision is able to focus on whatever silhouette is in the light.

“Visual memories aren’t always what I thought they’d be. I never realized how precious images in nature would become to me.”

Luanne and I went on a journey that reshaped us both (in different ways). Our adventure helped redirect and redefine our sense of power and glory, really just reflections of the intimate, yet brief, encounters we had with beautiful people and nature along the gossamer route. We were two different people experiencing the same route in very different ways.  TransRockies was a gossamer web because it reminded us of the interconnectivity of all things. In my impatient-selfish moments, I remembered to connect to the real reason I was out there: Luanne (regardless of when or where we finished). Our team of two was a reminder for other participants to connect to the experience not the race. For Luanne, it was about connecting to nature in a way she might never again.

Top photo courtesy Raven Eye Photography. 

Disability Profiles Vision & Hearing Loss


This blind athlete loves being noticed.

Salmaan Choudhri goes big. If he’s at the pool, he’s doing backflips; if he’s skiing, he’s shooting the black diamond; and if he’s playing music, he’s strumming—wait for it—the harp.

The 24-year-old, who lives in Evanston, IL, was born with retinitis pigmentosa, which causes progressive vision degeneration of the retina. “I was born with perfect vision,” he says. “At three, I got my first glasses, and in high school I had to start using a cane.” He is legally blind, although life is easier on him now than he was as a youngster. “I basically would hide my cane in my backpack and not want to use it. I was only the only kid who used one. I was kind of picked on a lot and I was embarrassed of my disability.” He played on a YMCA basketball team, never letting his coaches know about his vision impairment, staying under the radar by running up and down the court, even making a few plays and shots. “The coach found out only because he ran into me in the parking lot and saw me with my cane,” says Salmaan. “He was shocked: I wish I could’ve seen his face.”

“I was born with perfect vision. At three, I got my first glasses, and in high school I had to start using a cane.”

Salmaan’s mother, a teacher originally from Pakistan, encouraged her son to try any activity that caught his fancy, from horseback riding to rock climbing to downhill skiing via the American Blindness Skiing Foundation. On trips to Alpine Valley in Wisconsin, sighted guides gave him verbal guides as he navigated the chairlift and the mountain: “’Chair coming in 3, 2, 1’: Then they helped guide you to sit down,” says Salmaan. “They call you commands from behind: ‘Looking good, looking good, left turn coming ahead.’ It’s constant communication: all I have to do is listen and ski.”

Salmaan loved the sport so much that he went on weekly trips, and within a year was on black diamond trails, addicted both to the to the speed and the attention he got.  “Because we wear these big orange bibs that say “Blind skier,” I’d get stopped and get a lot of compliments: ‘Wow, you’re blind and you could still go down the steep mountain,’” he says.

Salmaan in his “Blind Skier” bib.

“I like going fast,” might well be Salmaan’s motto. This also explains his love of ice hockey, which he picked up two years ago, wanting to add a new challenge and thrill to his long list of challenging thrills. Thanks to his experiences rollerblading and skateboarding he took naturally to the ice and enjoyed learning skills like skating on one leg, going backwards and perfecting a screeching hockey stop. Salmaan now skates for the Chicago Blackhawks Blind Hockey team, playing in international tournaments and honored as the team’s player of the month in early 2017. Blind hockey is fast paced like sighted hockey, but with a wider net and a larger, heavier puck filled with ball bearings to provide an audible presence (the puck’s weight also means the players don’t need to worry about objects flying at their face.) Another difference between hockey for the sighted and for the blind: no fighting. “It’s a little too dangerous,” Salmaan admits.

Not like Salmaan’s the physically fighting type. He channels his energies into proving, over and over again, that his impairment won’t stop him, although occasionally he gets frustrated by the thoughtless but well-meaning sighted. Not long ago, a woman shouted “It’s not rocket science!” at him while he waited for a revolving door to slow down at a busy train station. “I turned around and I showed my cane,” he says, adding. “Some people are ignorant.” Sometimes, too, people assume he can’t manage stairs and stick him in an elevator not realizing “it’s kind of hard sometimes for me to find the button. Sometimes there’s not Braille in the elevator so I’m stuck in a box.” It’s with these types of people that he most relishes telling stories about his time on the slopes or in the rink. “They almost have a mini heart attack. They’re like, ‘But you’re blind.”

If Salmaan’s battling anything, it’s for the education to get him on track to his dream job as a disability or human rights attorney. After getting straight A’s in high school, he says: “College kind of ruined me a little bit: I had to fight a lot for my accommodations.” At University of Illinois in Chicago, the school was unable to consistently provide him the large-print exams and assignments he required: “It would always be not enlarged the right way or upside down missing or with sections cut off,” he says. “I was really frustrated with that: I would have to storm into the office, 12 blocks from my dorm, and have them fix it.” He filed a few lawsuits with the school and ultimately transferred to Northern Illinois University, from where he graduated with degrees in sociology and anthropology. He tried to take the LSAT but the LSAC ultimately refused his application, citing his requests for what they saw as too many accommodations like large font, a live person reading and breaks to rest his eyes—accommodations he received when taking the ACT. “They wouldn’t even give me my money back,” he says.

Salmaan also suffers from anxiety: the sports help, but he can’t always get to a rink or to a mountain. “The two things that help the most are prayers and music,” says the practicing Muslim. While attending a recital in college he heard a harpist perform and thought: “I have to learn how to play it.’” With the help of a good teacher as well as Braille and light stickers he places on the strings, he has become proficient enough to take his door-sized, ten pound carbon fiber harp to play at open mics around Chicago.

When he’s not playing hockey or the harp, Salmaan enjoys horse-riding.

Salmaan intends to start law school after racking up some time in the workforce. He’s currently spending time with kids at Youth Opportunity United, which provides tutoring and counseling to Evanston families. He enjoys working with kids and showing off for them on field trips: “We went to a water park and I was doing flips off the high dive. All the kids were like ‘He’s fun! How can he do that?” He likes to think that he kids gain something by watching the way his vision impairment forces him to adapt to his surroundings and situations. “It’s almost like giving kids more knowledge by [my] being there,” he says.

One has to wonder whether Salmaan would be who he is, the way he attacks challenges, if he could see. “I might not,” he admits s. “My vision impairment shaped me in a very different way, and the activities I played [did too.]” Before he discovered his prowess for sports, he was the kid who was so shy and embarrassed about being blind that he hid it from other people. “The old me would be like, ‘I don’t think I can talk to you right now.’ I felt like everybody looked at me differently and just thought by looking at me, that if I can’t see, I can’t do anything.”

As we talked, the shy Salmaan, who initially gave short and quiet answers, relaxed into the confident Salmaan, who volunteered more favorite examples of his adventures, punctuated by a modest but proud laugh that grew more frequent throughout our conversation. He remembers another favorite adventure: “The funniest one was when we went caving, I was the only blind person on that trip. It was really dark — even the headlights weren’t working, so dark inside. I was climbing and going faster than everybody else, just by feeling around.”

Disability Profiles Vision & Hearing Loss

Pinky Fang, The Artist With Different Eyes

Being blind means more than one thing, and It doesn't always mean you can't see.

Megan Ultimate, who works under the alter ego Pinky Fang, is a twenty-nine year old visual artist from Wellington, New Zealand. She is also blind.

Pinky has a condition called Retinitis Pigmentosa, which is slowly stealing her vision and literally changing the way she looks at life.

Writer Sarah Wilson spoke with Pinky about the role blindness plays in her life and work.

Pinky Fang always knew that she was going to be blind. For her, Retinitis Pigmentosa is genetic. Her father has it, as does her uncle, and her grandmother. Pinky was five when she started exhibiting symptoms of the disease.

“There’re actually several hundred different strains of RP,” she tells me. We’re sitting together behind the counter in the record store where Pinky works on the weekends. She’s passionate about music, has been a DJ for bars and charity events, and has an enviable collection at home.

“If you don’t inherit RP, it can happen to you pretty fast,” she continues. “But for me, it’s been a slow decline my whole life. I guess it’s a genetic lottery what type of eyes you get.”

Pinky Fang, whose real name is Megan Ultimate.

Pinky Fang, whose real name is Megan Ultimate.

Although she retains some vision, Pinky is legally blind, and is a member of New Zealand’s Blind Foundation. To be classed legally blind, a person’s field of vision must be less than twenty degrees in diameter. A fully sighted person has 180 degrees.

“When I found that out, I thought, ‘Oh well, I have way more than that.’ I went to an ophthalmologist to get tested, and it turned out I only had six degrees. So that was a big shock. It really hit me then.”

Pinky describes what she sees as “like looking through a cardboard tube.”

“There’s nothing around the outside, I don’t have any peripheral vision. I also have a separate astigmatism that makes the middle bit blurry, but as long as I wear my glasses, that circle in the middle is fine.”

Pinky’s symptoms became more obvious when she was about fifteen.

“The first thing I noticed is I couldn’t see at all at night. Your retina just doesn’t adjust, so I couldn’t see a thing as soon as it got dark. And even during the day, I started bumping into things and falling over.”

Pinky’s always been an artist, and knew early on that art was what she wanted to do with her life.

“I studied some other stuff for a while, but art is part of me. People get confused by how I can be blind and do art. They don’t understand that the word ‘blind,’ doesn’t necessarily mean no vision at all. And even if I was totally blind, I’d still find a way.”

Four years ago, the stress and anxiety associated with not being able to see properly made Pinky realize she needed to reach out for help.

“I started waking up, and another patch of vision would have gone overnight. It was scary.”

It was at that point that she joined the Blind Foundation.

“That was a real change. I’d never used the word “blind” to describe myself before. But they taught me how to use a cane, and introduced me to support services like counseling.”

Pinky was part of the Foundation for three years before she went on the waiting list for a Guide Dog.

It was during her time with her first dog, Penny, that Pinky became an advocate for people learning more about blindness and Guide Dogs.

“I wanted to spread the message that ‘blind doesn’t necessarily mean ‘no vision at all,’ because that lack of understanding can actually make it harder for blind people. It’s difficult when you sit in the grey area.”

She worries about people thinking she’s a fraud, because she can see some things some times, and not others, an inconsistency which is normal for blind people, but one that’s easily misunderstood.

Last year, a bus driver accused Pinky of faking her blindness.

“It was so public, and so humiliating. It got on the news and everything. I tried to use my Blind Foundation card to get my fare on the bus, and the driver laughed at me and said that I wasn’t blind. It was awful. I was so upset, I’m still upset now.”

She’s also an advocate for teaching people how to interact with Guide Dogs.


An illustration of Pinky's dog,

An illustration of Pinky’s dog, Penny.

“Other people are not supposed to touch them or even talk to them while they’re working, because it can be really dangerous if they get distracted. But it happens all the time, and it’s really frustrating. It’s not like it’s not obvious; she’s wearing a Guide Dog coat, I’m holding her harness.”

Guide Dogs have at least two years of training before they are matched with a person. Then, a trainer from the Foundation works with the dog and its owner to ensure they can work together.

“My first dog, Penny – we had a rough time. I didn’t really know what I was doing; it was all new to me. People assume that Guide Dogs just know exactly what they’re doing, like they instinctively know where you need to go, and of course they don’t. There is a lot of training involved.”

“They still need you to direct them. If you don’t, they’ll just lead you to the park every time,” Pinky laughs.

Not all dogs are suited to the work, despite the training. Penny was eventually retired to be a pet.

“I was so sad about Penny,” says Pinky. “It was really hard to say goodbye, because I had spent months bonding with her. But it’s not fair to her, if she doesn’t want to work, and it was dangerous for both of us. I have to rely on the dog to keep me safe, and she couldn’t do that.”

After a six-month break, Pinky has just been matched with a new dog, Lyric, who is currently sitting calmly at our feet. Lyric will live with Pinky, stay with her at the record store, and accompany her every day to the art studio she shares with several other women.

Pinky says being blind doesn’t define her work as an artist.

“I kind of prefer that people don’t know I’m blind when they look at my work. I don’t want to be thought of as “that blind artist.” I want my art to be held to the same standard as everyone else’s.

“I don’t want to people to say ‘Oh, that’s really good for a blind person.’ I don’t mind if they know that second, but I don’t want it to be the first thing they think about.”

The Pinky Fang name, along with the Kitty Gang brand she has created, are known up and down the country.

Her art has a distinctive bold, quirky style, and she works in a wide range of disciplines, including drawing, painting, jewelry and textile design.

“I like to insert my sense of humor into my work. Nothing I do is generally too serious or meaningful – I just like to create things that people will find interesting and take some enjoyment from. I like people to laugh or smile when they see my work.”

The studio wall next to her desk features a large-scale mural of multi-colored cats, which are a favorite subject.

“I’ve always been a cat lover,” she laughs. “There’re quite a few people now who have personalized Kitty Gang tattoos, which is amazing – it’s the hugest honor to have people literally wear your work on their skin.”

Being blind influences, but doesn't define Pinky's art.

Being blind influences, but doesn’t define Pinky’s art.

“Do you think that being blind informs your work at all?” I ask. She nods.

“Well, sure. I mean, it’s not a subject I’ve explored much in itself, but it definitely affects the size and mediums I choose to work in. I prefer to do smaller scale stuff as it fits in my line of vision. Although, one of my favorite things to do is larger scale spray paint work. It’s hard with my eyesight, but I just take my time and do it piece by piece.”

Pinky aims to produce at least one new piece every week. She has held several solo exhibitions, and is planning another one for later this year.

I lean back in the chair and look at the dog curled peacefully at our feet. I wonder out loud what Pinky’s plans are for the future. She’s silent for a bit.

“That’s a really hard question,” she says. “I don’t want to fight against what’s happening. There’s no way of knowing when my vision will go completely, it’s different for everyone. So I just want to go with it. And I just hope that whatever I end up doing, it’s creative.”

Disability Q&As Vision & Hearing Loss

Sightless Seeing

This blind travel writer featured on This American Life says the world gets smaller for him when he travels, not bigger.

On Ryan Knighton’s 18th birthday, his doctor told him he had retinitis pigmentosa (RP), a progressive genetic disease that leads to night blindness, tunnel vision, and eventually total blindness. At the time, he was working in a warehouse driving forklifts (poorly), trying to save money to go backpacking in Europe.

The diagnosis drop-kicked Knighton onto an entirely different path. Suddenly forced to think about his future, he enrolled in college, where he discovered a knack for writing and professors who encouraged him to tell his story. This eventually led to his first memoir, Cockeyed, which describes his transformation from secretly seeing-impaired (covert strategies included hiding his blind stumbling among the expected calamity of punk clubs) to openly blind man.

At 43, he is now a memoirist twice over, a journalist, and screenwriter. He’s reported on the world’s largest rattlesnake roundup, learned to surf from a deaf friend, and gotten lost in a hotel room. His most recent screenplay is an adaption of Lisa Genova’s latest book, Inside the O’Briens, about a father with Huntington’s disease. He’s been interviewed by Ira Glass on This American Life, and Ryan Reynolds is currently attached to direct the film version of Cockeyed. We spoke with Knighton about eating insects, the unexpected pleasure of being taunted by a Mexican grandma, and the unique perspective his blindness affords him.

What did you think your future was going to be like before your diagnosis?

My plan at that point was none. I was a shit student. I had just come out of high school with C- and B-minuses. I didn’t have any kind of stellar path in front of me. I realized I’m not going to be able to work with my body, so I’m going to have to go to school. If you have to go blind, I recommend doing it at that age because you haven’t made any wrong choices yet. It’s not like you’ve committed yourself to a life of being an electrician.

If I hadn’t gone blind, I wouldn’t have become a writer. There’s absolutely no way that would have happened. I don’t know what I would have been, but I know I wouldn’t have been this.

How much does being blind influence you as a writer?

It is me as a writer. Early on some older writers told me, “You should write about it, but write about it as a point of view, not as a subject.” That always stuck with me. I’ve really been trying to do writing where blindness is taken on as an accepted point of view not as the focus.

Blindness sort of defamiliarizes the world. It’s primed to be satire for that reason, because you are the satirical point of view. You’re in the world that didn’t imagine you in it. Even in the most banal circumstances — like standing between urinals in a public washroom — there’s so much to write about. Are the urinals going to match your interpretation of the room? If you fixed my eyes, I don’t think I’d know how to write the same way anymore.

What is one of the hardest things about being blind?

My biggest issue is everybody else’s problem with it. All the issues everyone has with disability are always being projected on me, their fears or their sentimentality about it. I’m at a corner and eight people just suddenly grab me and carry me across the street. They rush to help me, even though I don’t want it or need it, because they get a kind of sickly good feeling from it. You’re kind of like a walking anti-depressant. I put on my socks and people applaud. I cut my meat in a restaurant, everybody cheers. Just being out in the public world, I’m constantly being infantilized.

All the issues everyone has with disability are always being projected on me, their fears or their sentimentality about it.

My wife and I were at this clothing store once. I was in the changing room, and she was outside. The guy who worked there said to her, “I just want to give you props for what you do for him, for being with him.” My wife was like, “What do you mean, like marrying him?” He’s like, “You know, it’s just so good what you’re doing. It’s just really great,” like it was some kind of civic duty.

What drew you to travel writing?

I think the job of the writer is to go where you’re not wanted or you’re not invited, and travel writing seemed incongruous with being blind in many ways. My mental map of my neighborhood in Vancouver’s Little Italy is so rich and detailed, that, ironically, when I travel, the world gets smaller, not bigger. When I’m on the street in another city, the thing next to me could be a mattress store or a bank. I don’t know. I move into a pencil sketch instead of a broader sense of the world by traveling.

There is no story if everything goes fine, but in my case sometimes very small things become big adventures. When my lawyer is doing my contract for editors, he loves to say, “Imagine getting off a plane and you can’t see. The airport is going to kill you. You’re going to be in the terminal and living there forever.” Everything feels like it could escalate at any moment into being a disaster of some kind. When I went to Cairo for AFAR, it wasn’t the revolution that terrified me; it was traffic. I couldn’t cross the street on my own. It was just insane.


You seem to throw yourself into situations most people would run from. Have you always been so fearless?

No, and I’m actually not fearless. My first reaction to being told I was going to be blind was a very working-class reaction, which was, “How am I going to earn a living? Who’s going to hire me?” The next thing that crept in around the blindness, which I hadn’t really anticipated, was the danger of being safe. My life was very stable. I had my routines. I had the places I went. I’d carved out my trapline. Now suddenly you realize that the backhand of blindness is boredom, and securing yourself against embarrassment.

That kind of cloaking yourself in safety and stability is really crippling to me. It’s like, “What is the friction in my day anymore? Where is the surprise?” I find that a lot of this has been driven by me constantly hedging against the encroaching boredom that comes with being safe all the time.

What is one of your most embarrassing travel experiences?

Years ago, my wife and I went to Mexico and I wanted to have the Hemingway Old Man and the Sea moment. I wanted to catch a big fish and wrestle with the weight of something like that. We got on a boat with a couple of teenage guys who were taking me fishing. And as soon as the shoreline disappeared off the horizon, I became violently seasick.

My eyes have fluid in them. Think of a pond that you can see through and now imagine that somebody threw a bunch of sand in it. That’s what my eyes do with the fluid. It’s moving around, but there’s a sense of a straight line on the other side of it. That would be the horizon. As soon as that was gone, oh my god, I thought my head was going to implode on itself. The entire world just went liquid.

I kept twirling my finger, signaling up to them, “Turn around.” They thought it was the funniest thing on the planet. When we got off at the dock, I walked by this Mexican grandmother who had a booth selling trinkets, and she totally mocked me. She was like, “Oh, poor boy. Oh. Poor tourist. Oh, the boat.”

No extra sympathy for being blind in that case.

No, it was kind of nice to be treated as just another jerk tourist as opposed to my usual smothering and sympathy. There was no condescension. They lumped me in with all the other gringos, and that was fine.

It was kind of nice to be treated as just another jerk tourist as opposed to my usual smothering and sympathy.

What sort of experiences you do intentionally seek out as a blind travel writer?

I try to find trips where my point of view can add something to the conversation that might otherwise go unnoticed. It’s usually around the senses other than sightseeing. For example, when I did the rattlesnake roundup for VICE, I wanted to hear what 700 rattlesnakes sound like. It’s hard to find those experiences. You can’t just Google “cool smell” and find a trip.

Can you tell me about a trip that came your way because you’re blind?

I just did a travel piece for Popular Mechanics about a guy named Bun Lai. He plunked down beside me at the bar at Chicago’s Ideas Week and said, “You have to come out to my restaurant.” He’s an MMA fighter who is also a sushi chef in Connecticut. He only serves invasive and underused species, so it’s all like lionfish and weird weeds and stuff. There’s no tuna, no salmon. I’m like, “I totally want to, because I want to see what it’s like eating insects.”

In that situation it might be easier not to see.

Yeah. People are afraid of a lot of his food because it looks so different. His aesthetic was partly shaped by this young adult novel, Decay, which had a profound impact on him as a teenager. It was about a kid in World War II who was on a boat that gets torpedoed. He’s blinded and ends up washing ashore on a desert island. It’s all about him diving and foraging, and how he survives because his inhibitions are gone because he doesn’t see what he’s eating and what he’s doing.

Bun took me out skin diving for clams off the coast. Then we foraged for seaweed out in these little rocks way out in the ocean, and foraged in the forest and caught Asian shore crabs. It was fantastic.

A candid photo of Ryan Knighton.

A candid photo of Ryan Knighton.

Where are you headed next?

I’m going on a safari in Zimbabwe for AFAR. When the editor first called, she said, “Have you ever thought about going on a safari?” I said, “Fuck no.” That’s like asking me if I want to go to a drive-in movie. Why would I do that? I’m just going to be sitting in a car while somebody tells me the rumor of what’s going on out there. Then I realized it’s not about the animals for me. It’s about the guiding. I’ve been guided my entire life. I want to feel what it’s like to be guided in the most extraordinary sense and really think about the idea of guidance and what it means.

Most people focus on the animals in the safari, but there’s this interloper.  It’s that blind point of view — it amplifies things that everybody else turns the volume down on.

You mostly write screenplays now. What’s it like writing for such a visual medium?

I find that screenwriting ironically is the most comfortable fit for me. It’s endlessly surprising to me that screenwriting could be suitable to a blind person. But, when you think about it, a screenplay is basically a blind person’s document. You’re trying to describe a picture that nobody else can see.

When you think about it, a screenplay is basically a blind person’s document.

Nobody in Hollywood has really ever questioned that I can or can’t do this. Nobody has said, “Do you even watch movies?” In fact, I get a lot of compliments on how super visual my screenplays are. I think maybe sighted people think they have described things more visually than they have, because they’re not used to putting their mind’s eye into words the way I have to.

It’s sounds like the combination of being blind now and having been sighted in the past makes screenwriting a great fit.

When you go blind, your mind’s eye doesn’t go blind with you. You still want to see things sometimes. My wife has pointed out that my speech got more visual as I went blinder. I won’t say, “See you later.” I’ll say, “See you around the pool hall.” When my students are dead silent in front of me, I’ll say, “Are you guys giving me Easter Island stone face?” Part of it is just to amuse myself, but I think part of it is because I’m doodling on the world around me all the time. I’m trying to give things visual dimension, even if it’s cartoony and my own self-imposed picture.