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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.

Essays

It’s Time For Hollywood To Rethink Disability

When disabled actors aren't cast for disabled roles, it doesn't just reinforce harmful stereotypes: it makes movies more boring.

I’m a movie buff. There is nothing better after a long day of writing than sitting down with some popcorn and getting lost in a good movie.

Since I have become disabled, I particularly enjoy watching movies where the main character faces what I go through on a daily basis. It makes it feel like someone else gets it, that I’m not alone.

Unfortunately, these characters are few and far between. What I am often faced with instead is a thoughtless ablewashed version of my disability.

I recently overheard an interview with Blake Lively about her role as a blind woman who regains her sight in All I See Is You. In particular, one of her comments stuck in my craw: she said she thought her husband in the movie was “generous” for taking care of her character while she was blind. Cue the inspirational music.

Blake Lively, of course, likely does think that the husband in question is generous for loving a disabled woman. But that’s the problem: her comment not only reinforces the stereotype that the disabled can’t care for themselves, but that they are less worthy of love. The idea that a non-disabled person should be relegated to sainthood for tolerating his blind wife (whom presumably he loves for more than her vision) is offensive no matter how you cut it.

Let’s put it another way: can you imagine a Hollywood actor being so oblivious that they’d suggest in an interview that a character in a movie was “generous” for loving a person of color, or an LGBT person? If they did, they’d be rightly pilloried. Yet when Blake Lively says it’s “generous” to love blind people—and, by extension, all disabled people–no one even blinks.

Her remark got me wondering, yet again: Why doesn’t Hollywood cast more disabled actors? We live our reality every day, so why are we so rarely allowed to step in front of the camera, and act out our stories? And where is the outrage about it?

As a country, we have largely decided that it’s inappropriate to cast white actors in non-Caucasian roles, yet there has been no such outrage over casting non-disabled actors into disabled roles.

In the 2016 Ruderman White Paper on the Employment of Actors in Television, the authors note: “A white actor on screen in blackface is unheard of nowadays because we as a nation recognize that there is absolutely no reason why a black actor wouldn’t play that part.” This goes for other races too. Consider the backlash that occurred when Scarlett Johansson was cast to play a Japanese woman in last year’s Ghost in the Shell, or the controversy around the Wachowski’s controversial decision to fit Caucasian actors with prosthetics so they could play Asian parts in Cloud Atlas. These are both examples of whitewashing. As a country, we have largely decided that it’s inappropriate to cast white actors in non-Caucasian roles, yet there has been no such outrage over ablewashing: the casting of non-disabled actors into disabled roles.

“It’s as if the nation, in general, dismisses the abilities of people with disabilities to such a degree that it doesn’t even occur to them to wonder why they are seeing Artie in Glee played by the able-bodied Kevin McHale,” the authors conclude.

Of course, I’m not saying non-disabled actors can’t portray disabled people. With enough research and method and talent, any actor can be successful any role: consider Daniel Day-Lewis’s Oscar-winning portrayal of Christy Brown in My Left Foot, for example. Even so, should they be cast, when disabled actors would kill for the same roles, and have just as much if not more insight into their characters? Because by shutting disabled talents out of Hollywood, we’re also being shut out of the conversation.

By shutting disabled talents out of Hollywood, we’re also being shut out of the conversation.

And it’s not just actors, either. Behind the camera, there need to be opportunities as well. Maybe actually working with more handicapped people would wake Hollywood up to the fact that the disabled don’t exist to be pitied, or taken care of: we’re quite talented and competent, actually. And maybe then, we wouldn’t see so many dumb, boring movies about disabled characters pining away for their pre-handicapped lives. Every time I see these scenes, I want to scream at the characters: “Come on, people! There is so much of life left to live. Get out there and live it!’

But the news isn’t all bad. Sometimes, when I turn on the television, I’m even hopeful that things are changing.

Micah Fowler as J.J. on ABC’s Speechless.

Peter Dinklage is widely hailed for his role as Tyrion Lannister in HBO’s Game of Thrones. Like Dinklage, Tyrion Lannister has dwarfism, but thanks to the actor’s skilled portrayal, that aspect of the character very quickly blends into the background. That’s because Dinklage gets it; he lives with his dwarfism every day, and it doesn’t define him.Same with Micah Fowler on Speechless, who has Cerebral Palsy and plays J.J., a typical teen who also happens to use a wheelchair and a communication board. There’s nothing about the way Speechless is written or directed that makes J.J. seem “less than” the rest of the cast: it’s obvious from the start that he’s as vibrant and equal a member of the family as everyone else.

Get it together, Hollywood. It’s time to let disabled actors help tell their own stories.

Hollywood should aspire to make these examples the rule, not the exception. When disabled roles are filled by disabled actors, they usually make their characters more interesting and multi-faceted, which, in turn, makes the movies and shows they’re cast in better. These actors are simply more qualified to show the reality of disability: it’s just another part of someone’s life. Disability doesn’t wholly define anyone.

So get it together, Hollywood. It’s time to let disabled actors help tell their own stories. Not because we’re “inspiring,” or as a token bit of casting, but because we’ve earned that right. Movies can do better than Blake Lively. Hollywood, you can be better if you try.

Profiles

A Viral Campaign To Bring Disability To The Toy Aisle

Toy Like Me is putting pressure on the big brands to make their toys as diverse as kids are.

Watching television one day as a child, Rebecca Atkinson saw something that made her sit up straight with excitement. Like many British children, she loved the television show Blue Peter and watched it religiously. But today, she noticed something different on her favorite show: one of the presenters had a hearing aid, just like hers.

“I excitedly called my mum in to tell her that there was somebody like me on TV. I thought, if she’s got a hearing aid, I can be like her when I grow up, because kids want to be on TV like their idols.”

Rebecca’s excitement was dashed when her mum explained it wasn’t a hearing aid, but a radio piece in the presenter’s ear. It was disappointing, but not surprising. Because it wasn’t just television, it was everywhere: there just weren’t children like her. It wasn’t until adulthood that she was able to put the sense of isolation she felt into words, and realize that she’d been looking to see herself reflected back by the wider world.

“Those memories were me looking for some kind of recognition of my experience in the world around me, and it just wasn’t there.”

Rebecca Atkinson, who has Usher’s Syndrome, started Toy Like Me to bring diversity to the toy aisle

Later, a career in journalism and children’s television further confirmed Rebecca’s conviction that disability was missing from the mainstream. But it wasn’t until around two years ago, when her children were small and she was knee deep in toys, that she had a “lightbulb moment”, realizing disability was missing from the toybox, too.

Along with a couple of friends, Rebecca got to work. She created the Toy Like Me Facebook page and posted pictures of a Tinkerbell doll with a cochlear implant she’d fashioned with modeling clay. The pictures went viral, and the group gained thousands of members overnight. When Rebecca’s online petition asking for toy representation was signed by 50,000 people, manufacturers noticed. Playmobil announced plans for a set of figures with disabilities. The Irish-made Lottie brand got on board, pledging to make a doll with a cochlear implant like Rebecca’s homemade Tinkerbell, and a few months later, Lego released a wheelchair-using figure, attributing it to the #ToyLikeMe campaign.

Two years later, Rebecca’s still waiting for Playmobil. “I’m at that stage where I’m ready to start shouting about that,” she says. However, Lottie’s Mia doll has hit the stores, and Rebecca says the wildlife photographer doll–who just happens to have a cochlear implant–might be her dream doll.

“I love her, I’m very proud of her. If I’d have been given a doll like that, I would’ve been very happy.”

Although she had a lot of friends growing up, Rebecca was self-conscious about being deaf. At school she wore her hair down to hide her hearing aids. She fantasized about a deaf classmate joining her school, so she wouldn’t be the only one.

When she was seventeen, Rebecca was diagnosed with Usher’s Syndrome, a genetic disorder that had caused her deafness. The condition also causes retinitis pigmentosa, and Rebecca was told she’d lose her vision. “It was quite a big blow,” she says. She left school: she had better things to do. She went on to study film and TV, and then moved to London to work at the BBC.

The Irish toy maker Lottie created Mia, a doll who has a Cochlear implant.

Eleven years ago, her sight worsened.

“I was living in central London, and it was very busy. I didn’t have a guide dog or a cane because I was in denial. I didn’t want to look blind.” She left her job to freelance, eventually moving to Norwich on the east coast to bring up her children, who are now nine and seven. Her vision has narrowed to a tunnel, and she gets around with help from her guide dog, Ruby.

Now, she works full time on her campaign. Looking for other ways to get her message out there, Rebecca’s exploring the possibility of a television show, working directly with children, and a longitudinal study with Goldsmiths, University of London.

Dr. Siân Jones, a research fellow at Goldsmiths, is hoping to lead the study. Siân carries out studies with Playmobil figures, harnessing children’s imagined play to measure their attitudes to ethnicity and disability after they’ve played with a figure with an unfamiliar identity.

With a group of 600 children, Siân measured the effect of playing with toys with different disabilities. She discovered that after three minutes of play, children spoke about disability in a more positive way, and displayed less anxiety about interacting with people with disabilities.

Siân, who has cerebral palsy, discovered when she worked directly with the children: the positive effects were increased. “It was an added kind of booster effect on top, it was an unexpected finding from that but it was nonetheless a good one.”

Siân is hoping to begin work on a year-long study examining children’s attitudes when disabled toys are left in their classrooms.

After twenty minutes of playing with a toy, children have been shown to find disability less scary when they encounter it in the real world.

“At the moment, we’re waving goodbye to the children after about 20 minutes of testing, with no idea how long these effects last. The longitudinal study will allow us to put toys in the classroom which is much more realistic, and to test over the course of the year to see whether there’s any change in attitude.”

Growing up, Siân says she was resigned to the fact she wasn’t represented. “I just didn’t expect to see any [representation]. My contact with other children with disabilities was very, very low as a child and so there was some isolation around that.”

Seeing toys that reflect themselves is important for children’s identity, Siân says. “If the toys represent [children with disabilities] it shows that they matter as a part of society. The toys act as role models: Barbie science dolls and the Lego scientists dolls show girls that they can be in that role, but disabled toys are missing. That presents quite a powerful message about the position of children and adults with disabilities in society: they’re just not there, and they can’t do these things.”

Siân believes disability is the “poor cousin” of ethnicity. “In most toy sets now you will see the male and the female represented in different ways, and there’s multiple ethnic characters, but disability is still not very well represented in the toy box.”

Siân adds that it’s important for every child, disabled or not, to see representation. “It’s important for children to have exposure to disabilities. It teaches important skills about empathy and seeing the world from somebody else’s perspective.”

“It’s important for children to have exposure to disabilities. It teaches important skills about empathy and seeing the world from somebody else’s perspective.”

Toys can help children work out the similarities between them and other children with disabilities, and through her research, Siân’s discovered the importance of helping children explore disability on their own terms.

She remembers one child playing with a legless Playmobil figure. “He played about thirty seconds of football before realizing that it wasn’t going to happen, at least, not in the way he was doing it. That just gave him a safe space to think about the rules of that game, and how he could play football with a child with no legs in a wheelchair.”

It’s important for kids to have toys to play with that are as diverse as they are.

Siân and Rebecca both mention the strength of imagination, the complex worlds and fantasies children create for their toys to inhabit. Toy manufacturers are well aware of this, creating mainstream toys with magical powers and fantasy features. But when it comes to disability, they fall back on stereotypes and everyday reality: Playmobil’s existing wheelchair-using characters are a child in a wheelchair or an elderly man. Lego’s wheelchair figure is a boy in a grey chair.

“That doesn’t speak anything to the child that is disabled,” Rebecca says. “With characters that don’t have a disability, we don’t have a problem saying, that character can be anything. But when it comes to disability we put restrictions that character. People will say, we can’t make a wheelchair fly, because in real life wheelchairs can’t fly, and we might offend somebody.”

Rebecca would like to see toy brands share responsibility for representation. “I would like to see a better peppering across the whole market: Lottie have the hearing aid doll, Barbie could bring out a wheelchair doll, let’s say Playmobil have a guide dog. Saying these things should be visible around the toy industry doesn’t mean one brand has to do it all.”

The Legos, Mattels and Playmobils of the world wield enormous influence, she says. “If a big brand recognises you, that is powerful. When big brands do inclusive things they send out a message that’s more powerful than they realize.”

“When big brands do inclusive things they send out a message that’s more powerful than they realize.”

“Toy Like Me is the first time where somebody has stood up and told these big brands that they have a moral responsibility to represent diversity to children, and to include disabled children in their products. [Big brands] hold the power to promote massive social change, and it’s time we saw that happen.”

Health & Fitness

Climbing Munros With Cerebral Palsy

Outdoorsman David C. Reilly has never let his cerebral palsy get in the way of adventure.

There is a certain satisfaction in proving people wrong. That’s a satisfaction David C. Reilly, who has cerebral palsy, has relished his whole life.

Born in Harrington, a harbor town that serves as the gateway between England and Scotland, David’s childhood days were spent outdoors. He remembers his father carrying him on his back in a carrier as they made their way over miles of hills in the northern heartland.

David C. Reilly has become a successful travel writer and outdoor sportsmen despite being born with cerebral palsy.

Struggling at school, where his teachers once suggested that his symptoms were so severe, he would better off at a day center, David turned to nature for solace. He became a Boy Scout, and threw himself into outdoor pursuits that allowed him to develop new physical skills, and traveling with his troupe.

Despite his teachers’ skepticism that he could ever sit a public exam, David grew up to be something of an academic. By 26, he had a bachelor’s in biotech and a master’s in molecular biology: “Not bad for a slow learner!” he jokes.

Yet it’s outdoors where David has always felt most at home. And despite the “unhelpful diagnosis” of cerebral palsy, which affects everyone differently, David has thrived pursuing his passion for outdoor sports.

Last year, for example, David cycled the length of the Outer Hebrides, an island chain off the west coast of mainland Scotland. The 186 mile, five day ride is an accomplishment for any cyclist, but especially for one who has to work so hard to maintain their equilibrium. If anything, though, David says he struggles to pace himself as he rides. “It is difficult striking a balance between trying to keep up with able-bodied friends and accepting limitations,” he says.

Another passion is walking the Scottish highlands, which can be beautiful, but also mean facing harsh weather conditions, especially in winter. “Walking in winter is a challenge and it brings elements of danger,” he says. The important thing for me is never to overestimate what I can safely do in a day. Better to go with someone, tell people where you will be as well as have a map and compass and know how to use them!”

Reilly on top of a Munro.

Climbing is another of David’s passions. During hikes with his university club, David became interested in climbing Munros, a series of 282 Scottish peaks–not quite mountains–each of which have an elevation of over 3,000 feet. There are 282 of these peaks all over Scotland, spurring a tradition known as “Munro bagging” in which climbers attempt to scale them all. David’s not quite a Munro bagger, but he’s climbed several of these peaks.

For a person who was vastly underestimated early in life, his love of the outdoors has opened the world to David. He now travels extensively, writing about his experiences for a number of publications, as well as his own blog. Some of his recent trips include a cruise down the Danube, and regular ski trips to the French Alps.

Next on his bucket list? A jaunt to North America, to ski the Rockies. Cerebral palsy can’t get in the way of David’s passions; he’s proven it needs to get out of the way of him.

Q&As

The Girl From Aleppo

Fleeing the war in Syria is perilous even when you can walk, but Nujeen Mustafa, who was born with cerebral palsy, had to make the 2,200 mile journey by wheelchair.

Two years ago, when Nujeen Mustafa was sixteen, she left everything she had ever known to travel overland to Europe. Mustafa was one of nearly five million externally displaced refugees fleeing indiscriminate bombardment and humanitarian catastrophe in Syria’s civil war. Unlike most of them, though, she is unable to walk. Mustafa was born with cerebral palsy.

Nujeen Mustafa. Photo: Chris FLoyd

From her hometown of Aleppo all the way to Germany, she went in a wheelchair pushed by her elder sister, Nasrine. It was a flimsy device; the footrest was a piece of tied-on wire. In it she traveled for a month through half a dozen countries, braving border guards, smugglers, the elements, driven by an uncertain hope that they would not be sent back.

In Aleppo, Mustafa grew up in a working-class Kurdish family. They lived in a fifth-story apartment. There was no elevator. As she aged, it became difficult for family members to transport her down the stairs and eventually she stopped venturing out of doors altogether. Mustafa was intermittently homeschooled but mostly she learned things from watching television.  Mustafa kept no friends her age. English proficiency was acquired through soap operas. By the time she left Aleppo she had never been on a train, plane, bus or boat.

Mustafa’s journey happened in stages. When her family left Aleppo, they were escaping violence instigated by their government. The Bashar al-Assad regime had heightened a military campaign against the city, Syria’s second largest and home to a key rebel stronghold. They fled to Manbij, another rebel occupied town. They had to leave after Islamic State militants conquered it, enacting a brutal theocracy. Women were forced to wear veils. There were beheadings. By car they crossed into Turkey, where they lived in Gaziantep, a seedy city in the south. Feeling unwelcome, they headed west for Europe.

For those with disabilities, the ongoing refugee crisis is tougher on nearly every level.

For those with disabilities, the ongoing refugee crisis is tougher on nearly every level. Yet despite their vulnerabilities, disabled refugees in the Greek islands, a major refugee bottleneck, are routinely overlooked in receiving basic services, Human Rights Watch reported in January; Shantha Rau Barriga, its disability rights director, described them as “an afterthought” of aid givers.

In the fall of 2016, the UN Refugee Agency announced it was giving special priority to disabled asylum seekers. They would be reserving 20 percent of their refugee housing in Greece for “vulnerable” people; most asylum seekers there live in camps. However, only 30 percent of that housing has been filled by the disabled, HRW found. The reason for this is thought to be Greece’s spotty system of identifying disabled refugees, which UN authorities have admitted has underreported the number of disabled refugees there. They have classified only about one percent of the over 27,000 asylum seekers in Greece as disabled, which is well below the expected estimate of fifteen percent.

Since making it to Germany in September 2015 Mustafa has started attending school for the first time. She is in the ninth grade. She has become a prominent voice for disabled refugees, giving numerous talks on the issue. She has been profiled in several international media pieces. In October, she published a co-authored memoir of her ordeal called Nujeen: One Girl’s Incredible Journey from War-Torn Syria in a Wheelchair. We spoke with her to find out more about her story and activism.

How long you been in Europe now?

I’ve been in Europe since September 2015. The whole journey here took a month. I left in August 2015 and arrived here in September.

Has Germany started to feel like home?

I’m getting Germanized in a sense, yeah. I feel more familiar with the whole system in general. I still feel a bit out of place. Until you learn all about the regulations and laws and how to socially behave, act, you do. But there are still some differences that I’d like to keep. I never wanted my identity to get erased. But I’ve started feeling more comfortable.

You are wearing braces. Did you get those in Germany?

Yes, last November. Hopefully I will get my teeth fixed as well.

How old are you now?

I’m eighteen.

Can you tell us about what life was like in Syria with cerebral palsy?

It was pretty difficult. I was born in the countryside of Aleppo but I grew up in Aleppo the city itself. I went outdoors like once in a year sometimes. We lived in a fifth floor apartment and didn’t have a lift. It was quite difficult, as I got older, to carry me. I did not want to cause much trouble so I gave up on going out. I became an introverted person. There was much loneliness. I had the neighbors, of course, next door, but they either left during the day or were much younger then me. So the side effect of that was that I was a friendless child. I grew up among adults, my uncles, relatives. There were often family gatherings at home. I never got the chance to attend school so I was homeschooled. Just the basics, the alphabet, bit of math, how to read and write in Arabic. Not much was expected from a disabled person in Syria. Special facilities are not as common as they are in Europe. Even if there are schools for the disabled, they’re really expensive. We could never afford it. That’s the reason that I was not attending school.

I was a friendless child… not much was expected from a disabled person in Syria.

My father retired from the workforce long ago. He’s 75. But he was a peasant. He would sell things. But he hasn’t worked in a long time. My mom is a housewife. She was really determined to get an education. She’s amazing at math. She’s amazing at geography. I wish I was half as smart as she is, even though she is illiterate. But she knows a lot. I think it was her determination to get an education that led to me getting my own education as well. My family just refused the idea of disability as an obstacle or an excuse for me to not getting an education.

How did you learn English?

I watched soap operas. With subtitles at first. But then gradually I noticed that I understood without even looking at the subtitles.

Which soap operas?

Days of Our Lives.

In America that’s popular mostly among grandparents.

I guess there’s an exception to everything right? One side effect of not attending school was that the TV became essentially my school as well as entertainment. I was watching it endlessly. I guess that my family did not like it that much but I had pretty much nothing else to do so they let me do whatever I wanted. I was left to watch documentaries. I became an information gatherer, just left to my bit of information collecting, fact collecting. I’m a big fact collector. I became a nerd. I love reading books. I would buy a book and finish it by the next day. I grew up introverted because I did not socialize much.

When did you leave Syria?

We left Aleppo in 2012 and immigrated back to the town where I was born. We were there until the beginning of 2014 when we left to Turkey and stayed there for a year. Then I set off on my journey to Germany.

How did you get to Turkey from northern Syria?

We went to the border and crossed in my uncle’s car. Then we stayed in Turkey for a year but decided that it was time for us to leave because there was nothing on the horizon. My sister could not go on with her education. My brothers could not find a job. Learning the language is difficult enough but as Kurds you are also not really welcomed. Turkey is so much more difficult when you’re a Kurd to get a job or be treated properly. It was not a very welcoming place. So we left because there was nothing on the horizon. For me the image of my future self sitting there doing nothing was terrifying. So when I was presented with this chance I welcomed it.

The image of my future self sitting there doing nothing was terrifying

My brother had left ahead of us and when we learned that the way to Europe was open we decided that this might be our only chance so we did it. We knew that we would soon run out of options if we waited. So we just left. I was sent with my sister to Europe. She’s nine years older than me. She pushed me across Europe. I left with a wheelchair. There was a group of relatives we left with, too. My parents stayed behind in Turkey. We were 38 people in total in the group, with 11 children.

What was the most difficult part of your journey in terms of your disability?

I think when we got to the point before we set off to the Greek side of the shore it was really difficult. Really rocky and hilly. The terrain was really difficult for a wheelchair so I had to be carried a lot. We spent the night there outdoors without shelter. This was at the point where you set off for the Greek side to Lesbos, before the dinghy. That was a really nerve-wracking period because there were a lot of children. We had slept there for a night already and the next day we were out of water. Had we had to spend another night there it would have been really difficult. I think that was the hardest part.

Another great difficulty was when I was detained in Slovenia for a day. We arrived in a bus to a military base. No WiFi or phones allowed. They told us we had to get off the bus. Everyone on the bus started losing their temper. They promised us that we would get out soon but of course we had no way to communicate so we got scared. It was really nerve-wracking because it was not the usual way people went. Normally it would have been Hungary. But the border was closed so we never made it to Hungary. That was a new way, a new route, unknown.

It was a two story building. There was an Iraqi group upstairs who did a hunger strike, or threatened one. There were a lot of ideas among the refugees about that. But it worked. We were released the next day.

That experience made me realize how precious freedom is. We were just detained. We could not go out and we were surrounded by police. It’s not pleasant, feeling unfree. There were people talking on the bus about someone they knew being detained for months, afraid they wouldn’t see the sun again.

That experience made me realize how precious freedom is. It’s not pleasant, feeling unfree.

Did officials treat you differently because you were in a wheelchair?

No. Starting out, there was a debate whether we should bring the wheelchair or not. The group feared that it was going to puncture a hole in the dinghy. Carrying me would have been much worse because I was not a little girl anymore. I was 16 back then. Imagine what body strength it would take to carry me all the way through. So the wheelchair was quite helpful and I don’t regret bringing it with me. And I would be first in line if there was any queue because of the wheelchair.

From Gaziantep to Izmir, which was the starting point, everything was new–busses, trains, boats–which is kind of embarrassing when you’re already 16. But I considered it as a really good experience. And I would want to tell my grandchildren about something other than the war. I knew that this was a once in a lifetime experience. I did not want to waste it on just being stressed. I wanted to live my age.

The ocean crossing from Turkey to Greece was really your first leg of the journey into Europe. What was that like for you?

On that day things were done so hastily because they wanted to get the boats set off as soon as possible, when the sea guards are changing shift. Otherwise if they discovered you they would turn you back. Once the shift changing began the dinghy sets off all at once, so it’s done very hastily before the guards come back. On the day no one really noticed my wheelchair. I was just loaded into the dinghy.

Did you see many other disabled refugees on your journey?

Oh definitely. Our camp in Greece was filled with them. The main camp was not accessible for disabled people. So I was transported to another camp which was only for special cases and people who are waiting for their Greek residency. So I met some people with disabilities. To be honest I figured out that my situation was the best among them.

Why did you decide to write a book about your journey?

My intention of the book was to give an insight on this problem. When you think of this crisis it seems terribly far away. We as refugees are generally thought of as something on the news, a news report, not as people. I wanted to give people an insight into who we actually are, that we too have lives and want the same things. I wanted people to realize what it is to be a girl, what it is to be disabled, what it is to be Syrian, what it is to leave civil war–that I’m not a number but a real person.

We as refugees are generally thought of as something on the news, a news report, not as people.

My whole life, being so isolated and lonely, I wondered what I could do. I looked for my mission in the world, what influence I can make. Now that I have a voice, that I can speak, I thought maybe I can make a difference. So it’s essential for me to do this kind of activism because we matter. No one’s an extra number in the world’s population. Everyone has come into the world for a mission and I believe that is mine. And I’ll do my best to present that. All of us deserve much better I think.

You have just returned from Madrid. What were you doing there?

Cover of the Girl from Aleppo.

I was attending the annual general assembly of the European Disability Forum. It was an interesting experience, an opportunity to raise the voice of refugees with disabilities in particular and take a look at the general situation in Europe [for disabled people].

Do you have other plans in championing this issue?  

I’m planning on starting a fund to focus on how to best help people here in Germany integrate, how to work with society and feel less foreign. I want to share my personal experience with others. I always think of myself as a guest here who has to be good to its hosts. The point of my focus would be to help Syrians in the best way I can but also help Syrians that are here how to best deal with a new society, culture and country.

What is your healthcare like in Germany?

I think we have the best healthcare in Europe. I get physical therapy three times a week. My therapist says that I’m improving, getting much more flexible. The name of my disability is tetra spasticity, which means the four limbs are spastic. We are trying to improve as much as we can but it’s not something that will suddenly go away. I am born with it. I just have to learn how to live with it. Therapy is making me more flexible and learn how to control the spasticity I have and make the best of my limbs to their highest potential, how to not make this disability a barrier between me and normal life.

Do you have an elevator now?

We live in a small house. It looks like a Barbie house. I’m pretty much happy.

We live on the ground floor so we don’t need an elevator. We live in a small house. It looks like a Barbie house. I’m pretty much happy. We live on the outskirts of Cologne. It’s really homey and cozy here, kind of gives you that fairy tale-ish atmosphere. I’m really pleased with where I live now. I have a few friends at school. Especially in my class.

What do you want to study when you go on to university?

I’ve always been interested in the essence of things so I’d love to study physics. Maybe become a scientist. Who knows, maybe an astronaut. I just hate gravity. Maybe I can find an alien and prove Hollywood wrong about the whole thing. They’re not just coming to invade the earth. I think it’s the biggest unsolved mystery. Are we alone? It has always intrigued me. Hopefully I can work on solving it.

Profiles

Meet The Sisters Of Invention, Australia’s Pro-Disability Pop Stars

We dare you to say these five ladies don't rock.

Tinker Bell snaps her wand and Pocahontas tears off her necklace in defiance. “This isn’t Disneyland, I’m not a novelty, this is as real as it gets,” chant the Sisters of Invention, a South Australia-based five-person girl band in their 2014 music video. For this upbeat, electro-pop song, the Sisters dress as Snow White, Cinderella and other Disney princesses, but their words urge listeners to look beyond the surface and take them seriously.

The Sisters all have some form of disability and write their own songs drawing from life experiences: rage, anxiety, grief, feeling different. “This Isn’t Disneyland” is a rebuttal of sorts to people who infantilize them. “We’re all grown up, we’re not babies,” Aimee Crathern tells Folks during a Skype interview. “If we’re treated like babies, it’s not our problem, it’s their problem. They don’t know how to treat people. They don’t know how to see us as normal people.”

Each member has first-hand experience with this frustration towards people who want to put them in corners because of their conditions. Annika Hooper, 29, is blind. Michelle Hall, 28, and Caroline Hardy, 31, have cerebral palsy. Jackie Saunders, 27, has Fetal Alcohol Spectrum Disorder. Crathern, 30, has a developmental disorder called Williams Syndrome.

The Sisters met through a choir at Tutti Performing Arts, an Adelaide-based organization that fosters the professional development of artists with disabilities. Producer Michael Ross, 35, (who is not disabled) saw the girls’ potential and helped them form a band. Together, the Sisters wrote and released their  their debut self-titled album in 2015, and are currently working on a second album. Meanwhile, “Pop-Ability,” a 5-part documentary series featuring the Sisters, began airing on Australian TV in March.

If they don’t know how to see us as normal people, it’s not our problem, it’s their problem.

The Sisters are pros all the way: they have a recording contract and get paid for every live performance. Still, Ross says certain attitudes around disability stubbornly persist. He’s observed those who incorrectly assume that “people with disabilities will be children forever and if they’re doing creative work, it must be for purely therapeutic benefits.”

Hooper says this attitude actually fuels her determination to write, perform and prove skeptics wrong. “Just watch me!” agrees Hall.

Having worked with the Sisters for six years now, Ross has also noticed some people coddling and sheltering those with disabilities, including the Sisters but also people with disabilities in general. “It could be the wheelchair user on the singing show being told they’re the most inspiring contestant they’ve ever seen,” he says. “Or the 30-year-old learning disabled artist being told they’re not allowed to use swear words in their art by a parent.”

The Sisters of Invention on set for their latest music video.

While women struggle with the glass ceiling, “in this disabled world it’s almost like a cotton wool ceiling,” Ross says. “It’s a low ceiling congratulating people for getting out of bed, congratulating them for not actually achieving anything and giving them very low expectations. If a non-disabled person were given the same treatment their growth would be stunted.”

Ross hopes that the Sisters help challenge these behaviors. “[Some people] never think of them as working artists, as professionals in the field,” he says. “That’s what the sisters actually do. We write original music and release it commercially. Part of the message is that they’re just being working artists.” Ross concedes that some of the attention the Sisters get is due to their backstory but insists their music has merit on its own. “Inevitably there is some bias because the band members are all women living with disability,” he says. “But the group has true, rare talent and that’s reason enough to be media worthy.”

It’s a low ceiling congratulating people for getting out of bed, congratulating them for not actually achieving anything…

Each song’s creation is a bit different, but the original spark of inspiration comes from real life.

“If someone’s come in and having a bad day, we might sit and talk and write about it and then Michael will get on the piano and start playing random chords,” says Hall.

Like real sisters, they’ve helped each other through heartbreak. When Saunders’ 14-year-old cousin committed suicide, the band wrote a haunting, piano-tinged ballad called “Tsunami of Kites” inspired by the loss.

Ross believes the Sister’s unabashed emotional honesty is part of their songs’ appeal. “It means more because we’ve written it ourselves,” Hall says. “Lots of people going through [different challenges]. It’s nice to know that when people come up to us and say, ‘I felt that in that situation.’” Adds Hooper, “they can relate.”

Performing live and on stage.

In fact, during one performance for around 400 teenagers, the crowd went so bananas hysterically screaming and cheering that Ross said he had to check on the Sisters and make sure they weren’t overwhelmed. It wasn’t their first gig, but “the band had never had that volume and duration of an applause before,” he says. Meanwhile, they reveled in the fans’ enthusiastic response. “When I checked in with the Sisters after the show they said it was exciting and they could get used to it,” Ross remembers.

At their album launch Space Theatre at the Adelaide Festival Centre in May 2015, the Sisters had about 200 people crowding the merchandise table, and even their support worker was surprised by the response. “They stuck in there, did it, and afterwards needed to chill out,” Ross says.

Between skeptics, the loss of Saunders’ cousin and other setbacks, it hasn’t been all smooth sailing for the Sisters, but Hall says most people dwell too much on what those with disabilities can’t do rather than seeing all of the other things they can. “If you focus on the can, it’s much better than focusing on the can’t,” she concludes.

Profiles

Reclaiming A Disability Slur Through Dance

As part of Heidi Latsky Dance, an NYC-based troupe of dancers with and without disabilities, Jerron Herman wants to show the world there's beauty and grace in cerebral palsy.

When modern dancer Jerron Herman was sixteen, he watched the 1989 film My Left Foot, starring Daniel Day Lewis as a spastic quadriplegic Irishman who teaches himself to paint and write using his only controllable limb—his left foot. “I cried like a baby when I saw it,” Hermann told Folks. “I remember thinking, ‘This is the first example of someone with Cerebral Palsy I’ve ever seen represented in media anywhere. It was sad that it took so long to find an example I could glean from.”

Herman, who has hemiplegic Cerebral Palsy, a neurological disorder that prevents the brain from sending proper signals to the muscles, resolved to become an artist of some kind—to help combat the virtual invisibility of disabled people in the media. “I wanted to tell stories different from what you’re used to,” he says. “I was not gonna be a cliche story.”

But at 16, the creative outlets available to him seemed limited: “Performance was never expressly a viable option for me. It was kind of that invisible dialogue between society and yourself—I’d think, ‘Nah, I’ve never seen anyone like me doing X, so I wouldn’t fit into that space.’”

I was not gonna be a cliche story.

Naysaying of Herman’s abilities began when he was still an infant. When he was diagnosed at three months old, doctors offered a worst-case-scenario prognosis: “They told my parents that I wouldn’t be able to clothe myself or feed myself independently, I wouldn’t be able to walk independently, I’d have a hard time with speech, there would be cognitive delay—basically, that I would need assistance with everything,” Herman says.

If you’d told those doctors that, at 26, Herman would be doing arabesques and jetes across the stage of Lincoln Center in New York City as a full-time member of the Heidi Latsky Dance Company, they might have laughed.

Growing up in Alameda, in the San Francisco Bay Area, Herman found that, though Cerebral Palsy limited mobility on the left side of his body and made him prone to spasm, he was capable of much more than his doctors had expected. “I was primed to subvert the prognosis, because it had such an overwhelming, overarching rejection of my abilities, that I thought somewhere it had to be wrong—in at least one of these don’ts, there had to be a do,” he says.

Photo by Amro Arida.

His parents encouraged this mentality. “They didn’t allow me to internalize the diagnosis,” Herman says. “They didn’t allow me to exaggerate how it affected me beyond reality.” When he was in preschool, they transferred him from a special education program to a mainstream public school. When it came to things like chores, they expected as much from him as from his able-bodied older brother, now an artist and an actor.

You need to keep control of your spasm. You’re called to the same amount of self-management as anyone else is, so start now.

“They instilled a sense of agency in me,” Herman says. He remembers shopping at Pier 1 with his dad as a kid, navigating aisles of expensive glassware: “My dad said quite bluntly, ‘I’m not paying for you to break a vase. You need to keep control of your spasm. You’re called to the same amount of self-management as anyone else is, so start now.”

Every Sunday, his parents took him to Acts Full Gospel Church of God In Christ in Oakland, where Herman first discovered dance. “Praise dance was very big in those years, when I was five, six, and seven,” he says. “I was exposed to people who would feel this overwhelming energy, this power that would cause them to dance. I was born into a body that wasn’t necessarily made for dancing, but if something overwhelming and powerful was coming forth, if God breathed it, then it was available to me. Church was the first context in which I danced without any kind of hindrance or inhibition.”

As preteen self-consciousness set in, though, he retired to the sidelines during praise dancing. It would be more than a decade before he once again shed his inhibitions. Despite his resolve to prove the doctors wrong, he still held deeply negative views of people with Cerebral Palsy, and feared for his future with the condition. “I’d see bedraggled homeless men doubled over, palsied bodies that weren’t taken care of, and I remember thinking that would be my trajectory, really,” he says. “That eventually, my limbs, musculature, everything would just degenerate. When you see someone who might have Cerebral Palsy, you don’t usually see their strength, freedom, liberation, you don’t see upward mobility—and that scared the heck out of me. You’re like, ‘what’s my position gonna be?’ So it was hard as a kid to think beyond that.”

I’d see bedraggled homeless men doubled over, palsied bodies that weren’t taken care of, and I remember thinking that would be my trajectory, really…

As an undergrad at NYU, Herman chose to study writing—because it involved minimal use of his body, so he figured it was the only form of creative expression that was really available to him.

Herman became a dancer almost by accident. In the summer of 2011, as an education apprentice at the New Victory Theater in New York, he signed up for a week shadowing the choreographer Shawn Curran, assuming he’d work as a teaching assistant. But on his first Monday, “Curran wanted me to be a participant. He invited me to do all the dance exercises that the public school teachers are doing.” By Tuesday, “Shawn was harassing me to dance. Of course, he knew I had a disability, but he thought I could do my own, different movements”

On Wednesday, Curran told Herman about a choreographer named Heidi Latsky, whose modern dance company’s mission is “dedicated to redefining beauty and virtuosity.” On Thursday, Curran handed Herman a ringing phone with Latsky’s manager on other line. “The following week, I was in a studio auditioning for Heidi,” Herman says. He landed a role in the GIMP Project, a series of dance pieces that aim to challenge preconceptions about beauty and body image.

“I had zero ambition to do dance,” he says, “so for Heidi to see something in me was incredibly energizing and beautiful. I now call Shawn my fairy godmother.”

Soon, Herman was performing GIMP with Latsky at Lincoln Center.

[Editor’s Note: In the above performance, Herman can be seen at the beginning, then again at the 3:20 mark.]

Of the intentionally provocative title, Latsky wrote: “‘Gimp’ is a word we’re taught not to use, just as we’re taught not to stare at people who look different.” However, the title embraces the lesser-known Oxford English Dictionary definitions of the word:. “fighting spirit; vigor” and “to turn, vacillate, tremble ecstatically.” These definitions were the foundation of the GIMP Project, which featured dancers of “all shapes, sizes, ethnicities, races, people with disabilities, people without disabilities.”

Among the cast was a bilateral amputee, doing an aerialist number using strands of purple silk; a woman who was eight months pregnant;  a couple of deaf actors; a burn victim; wheelchair users; a transgender person; older people; heavyset people; little people.

Dance became a platform to shake up how you think about dance, disability, my body… it’s activism by presence.

With whirling limbs and electrified shudders that echo his childhood praise-dancing in church, Herman played a role previously played by Lawrence Carter-Long, an influential performing artist and activist with cerebral palsy.

On stage, Herman’s limp becomes “an angry strut,” as the New York Times put it in a review of the “beautiful and moving” GIMP Project. What he lacks in mobility on his left side he more than makes up for with his muscular right side, which trembles ecstatically, per the preferred Oxford definition of “gimp.”

[Editor’s Note: Herman can be seen performing at the 25:30 mark in the video embedded above.]

“Dance became a platform to shake up how you think about dance, disability, my body,” Herman says. “It’s activism by presence.” In the summer of 2012, Herman became a full-time dancer in Heidi Latsky’s company; now, he also works as the company’s development consultant.

“My Christian upbringing and dancing in church did relay a kind of freedom in the body and the idea of investment; like, God has endowed you with this body, so use it!” he says. “And with that, you dance freely and maybe even dance professionally. As I have a disability and disability is characterized by limited mobility, I’m tempted to think that my dance career is divinely designed to upend our notions of what’s possible.”

My Christian upbringing and dancing in church did relay a kind of… idea of investment; like, God has endowed you with this body, so use it!

In 2017, a dance company like Latsky’s, which features disabled and non-disabled dancers, is still a rarity in the world of performing arts. When starting out, Herman had to write the script for himself; he didn’t have a single example of another professional dancer with Cerebral Palsy to model himself after. The scene is starting to change—Herman mentions fellow young performers with Cerebral Palsy like Jessy Yates, an actress and activist; Mark Travis Rivera, a choreographer and activist; and Greg Mozgala, a dancer—but performance is still widely seen as off-limits to the disabled. What would it take for Latsky’s approach to become closer to the norm instead of the exception—for the performing arts to become more automatically inclusive?

Herman suggests that, while established performing arts institutions should strive for more inclusivity and diversity of representation, cultural change will rely first on people with disabilities refusing to internalize stereotypes—and insisting on their own worthiness instead. “If more people with disabilities were audacious with their lives, identities, and beings and thought of themselves as worthy to grace Lincoln Center or the opera houses or the film world,” Herman says, “I think there would be this thing that would happen wherein we could not be silenced.”

Top photo by Dan Kim. 

Profiles

Traveling To Find A Place To Belong

Born with cerebral palsy, Turkish globetrotter Esin Merdan travels to find a country where her disability will truly be accepted.

 

Lying back on her hospital bed, Esin Merdan used to flick through the TV channels, dreaming of life in different countries.

It was both an escape from the boredom of hospital and a goal to aspire to. A decade later, the 22-year-old Turkish student has ticked off 12 countries… and she’s still far from being finished.

Traveling and living abroad can be a challenge for the strongest-willed millennial. In addition to the inevitable language barriers, there’s the sense of loneliness that comes from a long day exploring a city, driving yourself mad juggling currency conversions.

Merdan combats those, but she has a lot more to deal with too. Merdan has cerebral palsy, which makes it very difficult for her to walk. She relies on a crutch to get around, and will feel pain and discomfort when she is seated for too long… even on the flights that whisk her way to her next exciting destination.

“I get exhausted often so I have to rest for a long time when I get tired,” she says. “It has other drawbacks as well. I can’t sit still for too long or I start getting cramps. It was worse when I was a child: I had to have five surgeries to be able to walk.”

Esin Merdan’s first visit to Italy as a student launched her lifelong love of travel.

Disabled or not, it’s not uncommon for people who have never traveled to think it’s beyond them. That’s a feeling Merdan understands very well. But she feels that if she can do it, anyone can.

Currently living in Dortmund in Germany where she is on a university exchange program studying English language and literature, Merdan wants to show others there’s nothing stopping them from exploring the world.

The Ankara native posted a photo of herself to a closed travel group on Facebook and introduced herself, explaining her disability and fielding questions on how she travels 2000 likes and more than 100 comments later, it’s safe to say that others found her story inspiring.

“I shared my photos because I want people to be inspired by my journey. I want them to think if this girl can do this, then I can do this too. I want to motivate them to do better.”

It also inspired her to start up a blog to document her travels, encouraging others to leave the comforts of home to explore another part of the world.

While Turkey has always been her home, she has been able to go on youth exchanges to keep seeing the world. Moving to Germany in September 2016, for her year exchange will be the longest period she’s lived abroad.

Her first trip was to Italy when she was in high school. At 17, she came out top of her class in an English test, which won her a spot in a small group of students headed off to visit Rome and Palermo.

When she saw life outside of Turkey for the first time, she made a resolution to travel more. But she soon found out that the group of students she traveled with saw her as a burden.

“They felt like I was slowing them down,” she remembers. “At that moment I decided to live abroad. I would keep traveling and find a place where I could be accepted as myself. It became my desire and determination from then on.”

And to make sure she was accepted wherever she went, she started studying all the languages she could learning, including Italian, German, French, Japanese, and Russian.

When Merdan is looking into a new trip, one of the first thing she’ll research is if it’s disabled- friendly. Luckily, most European cities are, but because her disability requires special travel considerations, she usually visits each new place as part of a package tour, which she’s used to visit Rome, Prague, Riga, and–most recently–Disneyland Pari

It was her second visit to the romantic city, where she developed a taste for French cuisine especially salty and buttery dishes… hard to find in her native Turkey. As for Prague, she described it as a  “fairytale, I felt it was all like a dream. It is such a beautiful place it’s hard to put into words.”

However, it was Riga, the capital city of Latvia that gave a lasting impression: she was finally able to do some sightseeing by herself.

“I walked around and chatted with people and was able to see the beautiful things of the city by myself,” she remembers. “In all my previous travels,I was never alone: I was with a group. I wanted to see if I had what it takes to walk by myself and do things by myself and I saw that I could and felt so proud.”

Yet despite her valour and get-up-and-go attitude, traveling with this walking disability can leave her feeling blue.

I want to find a place where I am accepted by myself and without feeling like a burden to other people.

“One of the reasons I keep traveling is because I want to find a place where I am accepted by myself and without feeling like a burden to other people,” she says. “I don’t find it easy to go and talk to people. I find my disability to be a problem sometimes. I often meet with people that don’t really understand any of my struggles.” She will find she’s left behind on some walking tours as she can’t move as quickly as others.

She finds that every country she has been to has been a possible contender for a place she will find acceptance, she particularly enjoyed France and Italy.

Ultimately the place she wants to live “should be multicultural, people should tolerate each other regardless of religions, ethnic identities or health issues, or disabilities. Also it should have easy access to transportation. Living in Germany made me realize that I want to go to a place with great art and architecture, that is filled with sincere and friendly people. I think I would be really happy to live in such a setting.”

Not someone you want to meet on vacation.

While she still decides on where she might end up, Merdan has found acceptance in another, unexpected place: the international cosplay community,  who dress up as characters from films, books, or video games.

She will go to conventions with her friends all dressed up as different characters.

She likes the “cute” characters or ones that have similar personality traits to her own.

“I feel more confident and comfortable when I become a different character,  like I don’t have to worry about my disability or burdening other people. When we gather in cons, all of us are in different characters, leaving the usual sides behind is a refreshing change.”

The real world isn’t quite that accepting yet. Even so, Merdan keeps searching… and in the meantime, keeps traveling through worlds both real and fanciful to get there. Because one day, she knows she’ll get there.

 

Q&As

The Boy In The Chair

Andrew Gurza, who has cerebral palsy, has made it his life's mission to help end the taboos around sex and disability.

Talking about sex feels taboo for many of us, but for Andrew Guzra, the man behind the popular podcast Disability After Dark, talking about sex is just part of the job. From his self-proclaimed bachelor pad, Andrew creates and produces his own podcast series that deals with the intersection of his marginalized identities, and his work is catching on in a big way.

Andrew, who lives with Cerebral Palsy, talks and writes openly about dating, sex, and relationships as someone with a disability. Andrew also identifies as a queer man, and frequently discusses the intersection of his queer identity and his disability. Along with his podcast, he’s shared his work on the subject in The Huffington Post, The Advocate, and The Good Men Project, as well as his personal blog.

Photo: Yuli Scheidt

“My relationship to Cerebral Palsy is always changing,” he explains to me in an interview. “Some days I love it, other days, not so much, but it is a part of me, always. My Cerebral Palsy impacts everything I do.”

For his day job, Andrew freelances as a disability awareness consultant. He’s twice been a keynote speaker for Illinois State University, and does speaking events at schools across the U.S. Andrew is also active in Toronto’s queer scene, where he does outreach for the intersection of the LGBTQ and disabled communities.

Originally from King City, Ontario, Canada, the 32-year-old now resides in The Distillery District of Toronto, Canada, one of the hippest parts of the city. Nestled in east end of Toronto, Andrew lives and works among a hub of cafes, independent small businesses, and even a world-renowned chocolate shop. Working from the comforts of his home also alleviates issues of accessibility.

Like many people with Cerebral Palsy, Andrew has lived with it since birth. The working definition of Cerebral Palsy describes it as a “neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development,” that subsequently impacts body movement and muscle coordination.

But for people who live with Cerebral Palsy, there is no one-size-fits-all experience.“It’s not a disease or condition,” Andrew notes. “In my view, it is a disability.”

Cerebral Palsy generally appears at birth, but can develop later in life. For some people, it may impact balance, coordination, or posture. For others, fluctuating muscle contractions such as trembling or writhing are more likely symptoms. The type of assistance needed varies widely; some people who live with Cerebral Palsy require little aid, while others require near constant care. Across the board, Cerebral Palsy is a chronic condition that people can manage, but cannot cure.

For Andrew, living with Cerebral Palsy does not define his life. More than that, it does not define or supercede other aspects of his identity, including his sexuality. Andrew shared insights into his work on the intersection of disability and sexuality with Folks, with an edited interview appearing below.

#deliciouslydisabled

What inspired you to create Disability After Dark?

I had been doing disability advocacy work for years on my own with various brands I created, and I wanted to create a brand that played with the idea of taboo.  DisabilityAfterDark does just that. I wanted something that was almost dirty and inappropriate, but not quite.

How has Disability After Dark developed over time? What are your plans for the future?

I have been running AndrewGurza.com and DisabilityAfterDark since July 2016.  I have been working as a Disability Awareness Consultant on my own for over five years. My plans are to just keep producing what I refer to as “Cripple Content” for disabled people, by disabled people. Keep growing and get more speaking and writing opportunities.  Turn #CrippleContent into a well-known disability hashtag on social media.

I am also starting a side project called “Cripple Content Creations” to help disabled entrepreneurs brand their work. I want to give them the leg up and the help that I didn’t have and had to carve out. Basically, I work to ensure that disability has a place in our landscape in a fresh and exciting way.  

Have your family and friends been supportive of your work?

People seem to like it; they’ve told me it speaks to them. My podcast alone has over 2,500 downloads!

What was your “coming out” experience like?

My coming out story is pretty funny. I was two weeks shy of my 16th birthday back in 1999, and I knew I was queer, but I was scared to say anything. I didn’t want to add another issue onto my stuff.

I remember sitting in my mom’s kitchen, and she said, “What’s wrong?  Are you gay or something?”   I just said, meekly, “Yeah.”   

From then on, we watched Priscilla, Queen of the Desert, and I knew everything would be okay. But I have had to come out in many different ways – whether it be disability or queerness – over the years. You never really stop coming out as a Queer Cripple, if I’m honest.

I’ll never forget the long pause before he said, “I can’t [date you].  Your disability scares me to death.”

What was dating like as a young man who was both queer and living with Cerebral Palsy?

There were many challenges growing up as Queer and having Cerebral Palsy.   I’ll never forget this one night at a bar in my college town. I was crushing hard on this guy that I met a few weeks prior.  He was gorgeous; beautiful brown eyes, great smile, all the things I thought I wanted.  At the end of the night, we were standing outside, and I was trying to ask him out… or at least I wanted to.

I finally said, “did you wanna go on a date sometime?”  

I’ll never forget the long pause before he said, “I can’t.  Your disability scares me to death.” I was crushed.   

That kind of stuff happened and still happens to me quite a lot.   I would say in some ways, even at 32, I am still in some ways, growing up as Queer and Crippled.

Why do you think it’s important for people to talk about sex and disability?

I think it’s important for so many reasons: we don’t ever hear about it and representation matters. It’s also important because one day disability may occur to any of us, and we need the anchors to show us it will be okay.  That’s why it is so important!

Why do you think people struggle to talk about disabilities and sexuality?

I think people struggle because we have had the idea engrained in our culture that disability is inherently bad or wrong. Once you compound that with the idea of sex; the original sin, all hell breaks loose.  It’s easier and safer for people to think sex and disability doesn’t occur, but I also wonder how those same people might feel if their sexuality was erased?

How does it feel being in the queer community as someone with a disability? Do traditionally queer spaces feel accessible?

I definitely do not feel included enough or at all represented in LGBTQ+ culture. I feel that many queer spaces are inaccessible both physically and emotionally.  Queer spaces need to put disability at the forefront of what they do. Until then, they will remain inaccessible.

Disability may occur to any of us, and we need the anchors to show us it will be okay.

How have dates or partners reacted to your disability as an adult?

I tend to get similar reactions from dates: this quiet fear that they are afraid to voice, or this overconfidence which later becomes fear. They don’t want to offend me or say the wrong thing, but they tend to do just that.  If dates or partners would just be honest about their anxieties, I think things might go a lot smoother.

I have a plethora of bad experiences that I could talk about that center around people’s fear of disability…  I had a guy at a bar once feel me up to check and see if I was paralyzed or not, so yeah, that sucked.  

How does your disability play into how you feel during a date?

By that same token, I am always worrying about how my disability plays into a date or sex.  I’m never not thinking about it, you know?

Well, there haven’t really been too many good times, by way of dating just yet.  People are still really scared to date the disabled person, and it can be really exhausting to encounter that.   I’ve enjoyed dating with men on dating apps because it allows me to remove accessibility as a factor.   I’ve had a lot of men tell me on the apps that they’ve never seen someone so “real”, so I guess that’s nice.  I like that my disability helps me access vulnerability.

 

Photo: Yuli Scheidt

How do your identities play into one another?

My identities inform and interplay with each other, always. I am awkward and weird about both my identities… My brand is kind of built on the fact that I like being awkward and crippled. That’s why I am a queer cripple, if that makes sense.  

When you were in school, were disabilities or LGBTQ issues ever discussed in sex ed?

When I was in school, queerness and disability was never, ever discussed. Not ever in sex ed. I think it is critically important that disability representation happens in sex education.  This would show that disabled people have sexual value.  

Why is it important for people with disabilities to be seen as having sexual value? What sort of positive impact could it have on society at large if society’s stigmas about sex and disability changed?

It’s important for the disabled community to be seen as having sexual value, as it is for any group, but I think it is particularly important because people with disabilities are still, in 2017, seen as non-sexual.  Sex and disability, especially in LGBTQ+ spaces, is still “taboo” and “wrong.” I think that if the stigmas around sex and disability changed, our overall issues surrounding body image might disappear.  I also believe that we’d all be having a lot more sex!

Q&As

Not Your Ordinary Santa Claus

Dressed in his trademark Kris Kringle outfit, photographer Andrew Wyatt photographs rock concerts and teaches special needs kids.

Dressed in his trademark Kris Kringle outfit, photographer Andrew Wyatt photographs rock concerts and teaches kids with special needs.

Andrew Wyatt wasn’t always a photographer, nor did he plan on becoming a special education assistant teacher.

He never really thought about putting on a sequined Santa Claus suit and taking photos at rock festivals, either, but that’s exactly what happened.

While Wyatt makes his daily bread from working with the challenging special education population at a local Boulder, Colorado high school, his passion is photography and making people happy.

Folks sat down with Wyatt, who also has cerebral palsy, to talk about his path in life, from being the son of a southern Baptist preacher to becoming a sparkly, rock ‘n’ roll Santa Claus.

Thanks for taking time to talk to me today.

I appreciate it. I got held over at work an hour later than I was expecting to, so I literally just walked in the door.

What is it that you do?

I’m an assistant special ed teacher at the local high school.

What do you do? What population do you work with?

It’s a high school population, and it’s a population of kids with varying degrees of physical and mental disabilities. We have some that are completely immobile and have no speech capacity. And then we have others that we actually will go to general education classes with the student and just assist as they take the regular classes.

I definitely want to hear all about your work with kids and what you’re doing now, but maybe give me a little background on where you came from.

It’s a little bit of an unusual story. I was the son of a Southern Baptist preacher. His name is Robert Paul Wyatt. I’m Robert Andrew Wyatt. I just go by my middle name.

I grew up in rural, southern Virginia. Initially, I became a preacher, myself.

I did that for a couple of years, and I was undecided as to whether I wanted to continue with preaching as a life-long career. In my indecision, a friend of mine asked if I would go with them to this festival in the desert called Burning Man, back in 2002. I went and my head was completely blown off. All the king’s horses and all the king’s men couldn’t put Humpty Dumpty back together again. It was just so out of my realm of experience. I grew up in a very small town of 500 people with a very conservative upbringing and community.

I came out of that and two things happened. One, I immediately realized that preaching was not for me. That the universe was a much larger place for such a narrow idiom as the Southern Baptist practice and faith. What I did then, though, was to start working with adults with disabilities in group homes. I did that for a while.

Burning Man blew Andrew Wyatt’s mind wide open. Photo: Andrew Wyatt

What drew you to that?

I still wanted to serve. That was the thing that was really impressed upon me by my upbringing–the need to do what I could to help others. There was a group home that had an entry level position with no experience necessary. I was good at it, and I enjoyed the work. I just continued working with that population until I got a job at a school.

Then, two, I found a career in photography. I had never picked up a camera before Burning Man in 2002.

What’s a typical day look like for you with the kids?

I work in a pretty large classroom of kids. We’ll have 20 people in our classroom this upcoming year. There’s a number of assistant teachers that are in that group. What happens is that we all get assigned a schedule. For example this past year, during several different class periods, I’ll be sent with different kids to different classrooms. For example, I went to a World Literature class. I went to an Astronomy class with someone else. I went to a Biology class. I go and assist with note taking and am available for answering questions. Then there will be other times where the lead teachers of the classroom for special ed students will have a main class with a large number of them. For a couple of the periods during the day, I’ll be in that main room and be assisting with whatever curriculum they’re teaching during that class period as well.

It’s very rewarding. I had a really cool moment here in Boulder last week. I went to an outdoor free concert on the main street in Boulder. I ran into several of my kids and a couple of them ran up and gave me hugs. Then as soon as one of the students (who is immobile without speech) saw me.  As I walked up, she broke into the widest grin and her home assistant called it the “Andrew Grin.” That’s how much she likes me. I get my own smile, basically.

Wyatt’s sense of humor comes across in his work. Photo: Andrew Wyatt

That’s so great. You have your own condition. Are you able to bring that into your work with the kids?

Absolutely. The first year that I worked at Boulder High School, I was assigned one-on-one with a student who has a pretty severe form of cerebral palsy, but is 100% mentally capable. She is unable to take notes because she can’t move her arms. At first, she just didn’t trust me. She didn’t want me to help her. One of the ways I was able to bridge the gap and bridge the frustration that she was having was to open up about my own cerebral palsy and explain that I had a few road blocks of my own and it just created a little bit of empathy. Even when she was pushing the hardest against me, I just let it go and I’d wait it out. I was patient. I just said, “One of the reasons why I’m committed to helping you in whatever ways you want is because I have a little bit of understanding. Just a little bit. But even a little bit helps.” That kind of helps melt the ice as it were a little bit.

I bet any kid in that program is going to respond to that sort of disclosure.

Oh, yeah. I show the kids I can’t move my fingers in my right hand individually. I can make a fist, so I can move them all at the same time, but I can’t move them as if I were playing a piano, for example. I can’t lift my index finger up separately from all the others. Our kids are very fascinated by that. They’re like, “Whoa, that’s crazy!” I don’t hesitate because it does show a little bit of We’re all in this together kind of feeling.

Because we are.

Right. Because we are.

Photo: Andrew Wyatt

How do you go from working with kids with special needs to photographing the Flaming Lips? Those are two completely different vibes there.

One of the cool things that I get to show the kids is that when I take pictures with my camera, I can’t use my right hand to push the button, and the button’s on the right-hand side. So, what I do is I actually use my left hand and curl it around underneath the bottom of the camera and use my left index finger to push on the button.

That’s your adaptation.

Exactly, and I get to show them: Just because we have a difficulty using x, y, or z, we can work our way around them. Let’s see if we can sit down and work our way around this. That’s another bridge.

It’s a real concrete example.

As to the photography itself, I’m not even sure how it happened. When I went to Burning Man, it was just unbelievably beautiful: the landscape, the sunrises, the sunsets, the costumes, and the massive art structures. I just wanted to document it. I just started snapping pictures and friends of mine would tell me when I showed them, “These actually look pretty good.” You go to a festival, like Burning Man for example, and you can’t really take a bad picture. People were just telling me, “It seems like to us that you have an eye for this.” I just decided Well, let me just try it.

At the time, I was living in Jackson Hole, Wyoming, so I was thinking I’ll go on hikes in the Tetons. Or I would go to the county fair or the 4th of July parade just to see if I could take good composition photos. One day, somebody tapped me on the shoulder at the fair, I believe it was. This gentleman behind me said, “Hey, I see you around town with your camera a lot. We’re a new newspaper and we need a photographer. Would you like to submit some photos?” It was kind of crazy. I submitted a few and they liked my work, so they actually hired me on. When I was covering all the local events, concerts were a part of the scene there. That’s part of what they cover in their arts and entertainment section. I really liked doing it, so I decided that I was going to take five months off. During that five months, I just applied for music festival photo passes. I didn’t know if I was going to hear back from any of them, but it turns out I got approved by all of them.

Photo: Andrew Wyatt

Be careful what you wish for, right?

I know! It was crazy. I had to fudge one. I remember the first time I shot Bonnaroo, it’s such a huge festival that their requirement is that you have to be working for a publication of 50,000 or higher. Obviously, there may be 50,000 people living in the entire state of Wyoming, but that’s a stretch. I fudged the numbers, and I was like, well, if they check on it and they bust me, I just won’t go. But they didn’t. From then on, I was good. I got in my car, loaded everything up, and I just went from festival to festival. I started submitting to little online music magazines who also liked my work.

You’ve never had any formal photography training? It’s all self-taught?

Nope. Never did.

Tell me a little about the Santa suit. I bet it gets all the girls.

Being dressed as Santa during his photo shoots has become Wyatt’s brand. Photo: Andrew Wyatt

I’m married now, but at one time it was definitely a magnet for sure. Here’s how it happened: the first music festival I officially got a music pass to was in 2005. It was in Las Vegas. It was put on by the Bonnaroo people. This was the fall before I did my big five month road trip experience. I wanted to get one music festival photo pass, go to it, see if I did it right, and that was when I would make the leap. I needed a costume, though, because it was a Halloween music festival. It was a big event. Everybody was going to be in costumes, and I just looked online and found this Santa suit. I was only planning on wearing it for that festival, but everybody loved it. They wanted me to wear it the next day and wear it again the next year. So, I did. Then it just stuck. I just made sure that on at least one night during every festival I went to, I would wear the sequined Santa suit.

It’s your brand now, right?

It really is. That’s what’s so funny about it. Now people expect me to have it wherever I go. That’s the other thing people don’t realize either. I don’t really want to wear this thing every day. It’s funny on a day when I’m wearing something else, and they’re like How come you don’t have the Santa suit on?

You’ve got this amazing life. What’s the secret? What would you tell your students?

That’s a very good question. Wow. What do I tell the kids?

I guess I just try to enjoy life, really. Honestly, I work in a job where I can enjoy being with people and having fun with them. The photography is the same thing. Even the Santa suit–what I like to do is make people happy. That’s what my whole life, I feel like, is about. It’s making people happy. I really like that. The Santa suit makes so many people happy just to see. I’ve even worn it for my kids. During the Christmas season, I’ll come and wear it to school one day.

Photo: Andrew Wyatt

The secret to your success is to make people happy.

I would say so.

I think one of the other things in this regard is that if someone had told me, for example, that I could never pick up a camera because of my disability, I probably never would have. I just never let my life be determined by things that I couldn’t do without at least trying them first. I think even that year that I quit my job and decided to just start hitting the road photographing musical festivals, I wasn’t a music festival photographer. I didn’t know that I shouldn’t quit a job that was a steady income and fly by the seat of my pants. For me, taking risks is the reward for living. I would have been a whole lot less happy and would have been a whole lot less helpful to others if I weren’t willing to take chances. Sometimes I took chances without really realizing what the risks are, and it’s much easier under those circumstances, but even after having fallen on my face a few times, it still ends up being worth it.

All photos by Andrew Wyatt.