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5 TV Shows That Get Disability Right

From Stranger Things to Keeping Up With The Kardashians, here's five shows that refuse to look through chronic illness and disability through an able-bodied lens.

When it comes to representations of disability and chronic illness in popular culture, it’s easy to be frustrated. Anyone that knows me will attest that I often lament the lack of realistic depictions of disability on TV, which is all too glaringly obvious when you spend the majority of your life propped up in bed with your laptop, like me. (I could probably get up: I just choose Netflix).

Any disabled or sick person will tell you that seeing an inaccurate depiction of the condition they’re toxically glued to for the rest of their life hurts. For instance, I found ballet show Flesh & Bone gripping until one of the dancers discovered she had MS, and her diagnosis was as hamfisted as a Joss Whedon rewrite.

But all is not lost. There are shows that are getting accurate representation right. These television shows refused to be lazy, and instead dared to get disability right… in some cases, even daring to cast disabled actors in disabled roles (Eddie Redmayne, take a seat).

If you want to support the change you’d like to see in television, here are five television shows that get disability right.

Breaking Bad

A man with cerebral palsy talks to a bald man in glasses in a living room with plaid curtains in the background.

RJ Mitte as Walt Junior in Breaking Bad.

RJ Mitte’s depiction of drug lord Walter White’s son remains one of the strongest examples of a disabled actor being cast in a role which doesn’t focus on his disability. That’s important, because the part could’ve so easily gone to an able-bodied, Mickey Mouse Club reject. Living with cerebral palsy in real life, Mitte’s character had the condition, but it didn’t have him. Walter White Jr. was never defined by his disability, and is basic proof that just as Shonda Rhimes employs colorblind casting on all of her shows, an actor’s physical or mental impairments shouldn’t limit their chance to audition for any part. Plus, Walter’s dad, as a person with cancer who’s undergoing aggressive therapies, is a literal disabled badass, and I invite you to fight me.

American Horror Story

Jamie Brewer, who has Down Syndrome, is one of the core cast members of American Horror Story.

Actor Sarah Paulson recently said of American Horror Story co-creator Ryan Murphy (via Variety): “His unfaltering commitment to telling the stories of women is noteworthy. This is a man who wants to tell the stories of women over 40.” And the same is true when it comes to casting disabled actors in unexpected roles. One such disabled actor is Jamie Brewer, a woman with Down Syndrome who’s played clairvoyant witches, cult members, and creepy dolls, and continues to recur on the series even now. Plus, Inside Edition recently called Brewer the “First Woman With Down Syndrome to Star in Off-Broadway Play,” and if that’s true, it’s no mean feat that the prolific performer is blazing a trail and hopefully, instigating a major change.

You’re the Worst

Gretchen Cutler of You’re The Worst struggled with depression.

Gretchen Cutler could’ve been a cookie cutter anti-rom-com heroine, breezing through her character arc on too much booze, sex, and witty repartee. Instead, when You’re the Worst returned for a second season, Gretchen revealed herself to have the sort of show-stopping depression that ends lives, and destroys relationships. For anyone familiar with clinical depression, breakout sitcom You’re the Worst became agonizing to watch because its representation was so damn close. When viewed next to fellow character Edgar Quintero’s PTSD, You’re the Worst significantly defined itself as the sitcom that wouldn’t sugarcoat mental health even for a second.

Keeping Up With the Kardashians

Kim Kardashian struggled with anxiety on Keeping Up With The Kardashians after being robbed at gun point.

Love them or hate them, the Kardashians are honest when it comes to the truly negative and difficult-to-handle aspects of life. And when Kim Kardashian West was robbed at gunpoint in Paris in 2016, she developed a serious case of anxiety as a result, and viewers were given glimpses of her agonizing reality with the disabling condition. And despite mainly being off-camera these days, Rob Kardashian’s diagnosis with diabetes punctuated his own reality series, Rob & Chyna. Whether or not you agree with the Kardashian brother’s approach to handling his chronic condition, his denial and refusal to face up to the realities of the illness were endlessly relatable for any of us who have ever struggled to come to terms with our own diagnoses.

Stranger Things

Gaten Matarazzo of the Netflix phenomenon Stranger Things.

Gaten Matarazzo finally got his big break when the creators of Stranger Things decided to write the actor’s disability—cleidocranial dysplasia, a condition which affects the development of a person’s bones and teethinto the script. In a recent interview, Matarazzo revealed that he’d lost out on several auditions in the past, “Because they couldn’t write in a disability into the show because they had already written the script” (via HuffPost). However, as the casting process for Stranger Things proves, there’s literally zero reason that any role should be defined as able-bodied in the character description. It just shouldn’t, and doesn’t need to, happen anymore.

What These Shows All Get Right

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens. Instead, each depiction, regardless of genre, explores the highs, lows, and mundane details of disability, chronic illness, or mental health. Even more important is the fact that actual, real life, bonafide disabled people were cast in roles that were rewritten completely or simply created for them. Rather than farming out these roles to able-bodied actors, casting directors, creators, and show-runners took the time to consider disability. And in the cases of Matarazzo, Brewer, and Mitte, character arcs were altered for the better thanks to the actors portraying them.

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens.

Whether there’s strictly a “right” way to handle disability in the arts is questionable, but thanks to the growing number of crucially truthful roles for disabled and sick performers, the television landscape is getting more and more relatable. For instance, the first show by and starring Maysoon Zayid, co-founder of New York’s Arab-American Comedy Festival, is called Can-Can and is currently being developed at ABC. The autobiographical sitcom will (per Variety) follow a “Muslim woman who has Cerebral Palsy (Zayid), as she struggles to find love, the right career, and discover who she is separate of her opinionated Muslim parents,” which sounds super promising, and a little overdue.

It’s time that the stories of chronically ill and disabled human beings weren’t erased, glossed over, or summarized in a “case of the week” episode on a generic medical show. Sick people are tired as it is without having to fend off another inaccurate, depressing, or infuriating depiction of their well-worn diagnosis. And thanks to the television shows above, that’s slowly starting to change.

Ask Ada Explainers

Ask Ada: ‘When Should I Tell A Date I’m Disabled?’

In our new advice column, Ada explains the best way to reveal an invisible disability when dating, and helps a husband understand his wife's decision to undergo a life-changing surgical procedure.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Tell My Date About My Invisible Disability?

“Dear Ada—Reentering the dating world with an invisible disability is difficult. I’ve had mixed results: scaring people off by revealing it too early on or “being manipulative” by not disclosing it for what they perceived as a long time (~2 months, casually seeing each other). Any advice on navigating this situation?” – Sincerely, Brooke

Dating is one decision after another: What should you wear? Where should you go? How long should you wait to follow up for a second date? An invisible disability forces an additional question on you: When should you mention your diagnosis?

I wish I could tell you that there was a formula: for example, if you’re set up with your date through a friend, disclose your disability on the second date, but if you meet online, wait until at least the fifth. But unfortunately, there’s not, just like there’s no clear formula in most dating dilemmas.

I can, however, tell you that you’re wasting your time by keeping the information to yourself. This isn’t to say you should introduce yourself by saying something like: “Hi, I’m Emily and I suffer from Endometriosis!” But bringing up the topic early helps you weed the good dates from the bad ones.

Disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of.

I’d recommend disclosing your disability as soon as you’re sure that you’d like to continue getting to know the person you’re out with. You’re not determining if you want to marry them, just whether they’re worth the disclosure.

That answers the ‘when’ but what about the ‘how’? How should you reveal an invisible disability to your date?

Well, the truth is that disability shouldn’t be some shameful secret. It’s a regular part of your life, and that means the best way to disclose it is for it to come up naturally. So if, for example, you have Crohn’s disease, a good time to disclose that would be after you described your food allergies to the server. You could then follow-up by mentioning to your date how much you’ve learned about food since your diagnosis, then let them ask questions, guiding the conversation along when need be.

The bottom line is that disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of. Presenting your truth early and earnestly allows your date to process the news with understanding and compassion. If they don’t, then kick ‘em to the curb and try again.

My Wife Wants To Undergo A Double Mastectomy. Help!

Dear Ada—Recently, my wife of three years discovered that she had the BRCAI mutation, which makes it statistically much more likely that she will get breast cancer. Her mother and grandmother died of breast cancer, so my wife wants to get a preventive double mastectomy. But I’m not so sure. I’ve tried to talk to my wife about it, but she’s adamant there’s nothing to talk about: even though she doesn’t have cancer yet, she’s made up her mind, and it doesn’t matter what I say.

Suffice to say, I’m struggling to accept her decision. It’s not that I’ll love her any less without breasts, and obviously, I don’t want to lose her to cancer. I also know that it’s her body, and ultimately, that makes it her decision. But choosing to go through such an extreme surgical procedure without really asking me how I feel about it hurts, and makes me concerned about our future. What other extreme measures might she choose without talking to me first?

What should I do? What is the right way for us to approach this?” – Sincerely, Sam

It seems as if your issue is less about the double mastectomy and more about the fact that your wife made this major decision on her own and isn’t listening to your concerns. It also sounds like you think she came to this conclusion too suddenly.

But I think the truth is that your wife has probably been weighing this decision for years. When your wife’s grandmother and mother died of breast cancer, she probably began researching her options, including mastectomy. When it was confirmed that he was a carrier of the BRCA1 mutation, your wife’s decision became clear. It isn’t that she’s taking this decision lightly, it’s that she’s had a lot more time to come to terms with the emotional and physical transformation that will follow removing her breasts.

This isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.

Meanwhile, you’re only processing all of this for the first time. You don’t have the intimate knowledge she’s gained about breast cancer over the years, and because of that, you’re having a hard time grasping her train of thought. It’s not that she is trying to shut you out of the decision-making process, it’s that you are both literally at different stages of processing the news, without realizing where the other person is at.

While your wife is ultimately the only person who can make a decision about her own body, you both still need to try to come to a common understanding as to why she’s making this choice. So ask her to educate you, and explain how how she came to her decision. Tell her you love her, and accept her decision, but be honest about feeling left out, and concerned about what a failure to communicate productively about major life-decisions might mean in the future.

And then, once she explains? Respect her decision, and support her however you can. Because like you said, this isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Essays

Why I’ll Never Be Okay With Having A Chronic Illness

Everyone expects me to be okay with my condition. I'm here to tell you that's not how it works.

After my mom died, my doctor told me that grief was a gradual process. He also implied that there was a time limit on it. “Three months is normal,” he told me. “Six starts to seem long.” But when you’ve lost a part of yourself, there is no estimable time within which you’ll be better, no deadline in which you forget. And I’ve found the same to be true of the expectation that I’ll “come to terms” with having MS.

Multiple sclerosis is a disease of the nervous system. Faulty antibodies attack the body instead of protecting it, crossing the blood-brain barrier to cause inordinate damage to the brain and spinal cord. The condition creates lesions on the protective coating on my nerves, meaning signals get interrupted or confused, leading to nerve pain, tingling and itching, spasms, immense fatigue, mobility issues, cognitive impairments, increased disability… the list goes on, but you get it.

I was diagnosed with relapsing-remitting multiple sclerosis in 2013, around 18 months after my mom first found out she had cancer. While her initial treatment and operation were successful, ridding her body of that first tumor, it came back with a vengeance. By then, my own health issues were in full swing, too. Both diagnoses changed my life irreparably, and I’ll never be okay with that.

An Off Switch I Don’t Control

Both diagnoses changed my life irreparably, and I’ll never be okay with that.

Even though finding out I had a chronic condition explained a plethora of symptoms that went previously unexplained, learning that I was now disabled was about as digestible as the wrapper on a Big Mac. The only things that kept me going during the dirge that followed were an insatiable appetite for pop culture, and my support network on social media. Rewatching Felicity got me through, when you’d think meds would suffice.

My diagnosis floored me. There are literal physical things I can’t do anymore, and goals I’ll never achieve, because my body had developed its own turn-off switch that I’m not in control of. For instance, I can’t keep up with my friends, and traveling is way more challenging than it once was. I have to abide by a different timetable from the masses, and make sure that I exercise to stop my muscles giving up altogether. I don’t look too far towards the future because my body has the potential to deconstruct like the mission in a Tom Cruise movie, and that terrifies me. And before anyone starts, that’s not negativity—it’s my reality.

Any initial relief I had in explaining why I am the way I am—and no, it’s not in my head, and I’m not lazy, either—was soon replaced by a generalized dread that doesn’t really subside, nor should it. I’m living with a disease and it’s degenerative—how exactly should I feel about that? How much longer until I accept it with the ease of a Netflix cancellation? Answer: NEVER.

My Life Before Diagnosis

I’m living with a disease and it’s degenerative—how exactly should I feel about that?

Prior to diagnosis, I made theater shows. From applying for funding, to writing scripts, to performing the work myself, I was forging a career in the arts and trying to do it on my own terms. In some ways, performing had been my dream since high school, but I was never a natural at it—too awkward a human being to smoothly navigate a stage believably. But funding bodies and arts organizations continued to support me, so I went where my career seemed to take me.

A week after wrapping the tour of my second solo show, I ended up in the hospital with what turned out to be MS. While I’ve tried to write theater shows since, it’s a much trickier affair. My body can’t handle a nine-to-five, or fit into another person’s schedule.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better. In meetings since I’ve been told that theater takes everything and might not be for me if my heart isn’t in it. But my heart isn’t the problem—it’s my debilitating and energy zapping sickness that’s the barrier, and desire won’t suddenly make that shit possible. Plus, I can’t change elitist attitudes which make the arts an exclusive arena that’s difficult to enter for most, near impossible for the disabled.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better.

Just think about the movies and TV shows that have chosen to cast able-bodied actors in disabled roles. Arguments that “the best person for the job was hired” persist, and should prove just how far accessibility has to go before disabled people don’t feel disappeared into the background, erased from their own stories and character arcs.

After being told “we all feel tired” and generally having my symptoms minimized out of existence, and it being suggested that theater’s 24/7 work week wouldn’t suit me, I’m more determined than ever to put up a fight. I won’t go quietly into the night about this chronic illness I didn’t ask for.

A Diagnosis Is Not A Tidy Bow

Some therapists and healthcare professionals would like a diagnosis wrapped up neatly with a bow or placed in the correct trash can for recycling. A reusability. A sense of understanding or acceptance within a respectable timescale. However, learning to live with a new normal doesn’t just take time, but the effort of rebooting a beloved franchise. And as any sick person knows, effort is something in extremely short supply. My phone battery is running at 4% constantly and the wire to my charger is dangerously frayed.

Obviously, it’s not my job, nor anyone else’s, to make onlookers “feel better” about the disease that I have to live with. And the same goes for grief. If you’re uncomfortable because I’ll be mourning my mother forever, in my own way, then that’s your problem, not mine. My body has refused to conform to any supposed “norm” and my brain’s following suit.

I’m probably coming off as negative which is… well, accurate. I didn’t want this disease anymore than I wanted Ben Affleck to play Batman, but I learned to love him in his own way, even in those dead-eyed Justice League reshoots. And I’m learning to love my MS, and handle other people’s reactions to it in the same way that Affleck handles criticism to his superhero casting—by literally not giving a shit.

In case it needs stating: There is zero reason that anyone with a chronic condition should perfectly process their diagnosis, apart from to make other people feel better about it.

But just because I refuse to accept the chronic condition I’m stuck with, that doesn’t mean that I’m not living. I live in spite of my condition. Multiple sclerosis isn’t all of me, although on some days it consumes me, tries to convince me I’m dying. I might never shift the anxiety it’s amped up in me like a Christmas drink in Starbucks—too much syrup, a sickly cinnamon sprinkling, a heart-pumping, insanely sugary, caffeine explosion. And I sure as hell will never be happy I have a degenerative disease which requires monthly IV infusions. And my mom’s still dead, in case you forgot (I didn’t). I will never be okay with either thing, and not being okay is absolutely the only way for me to be.

The Good Fight

How To Teach Photography To The Blind

Teaching photography to a class of 20 blind students has taught Maria Iturbe to be a better photographer herself.

For most of the week, Mexican architectural photographer Maria Iturbe makes her living shooting building interiors and exteriors, as well as her fair share of executive portraits.

But about five years ago, a non-profit called Ojos Que Sienten, or Eyes That Feel, was looking for professors to lead a 12-session photography class for the blind and wanted to know if the young Iturbe could lend a hand.

Her response was skepticism. Teach the blind to shoot photographs?

“That’s crazy,” she remembers thinking. “I knew about photography, but what I didn’t know was how to teach blind people.”

Then, of course, she got on board.

Eyes That Feel

In 2013, Iturbe volunteered as a class assistant and eventually began leading the Mexico City course. It is offered two times each year to about 20 students.

Some have partial vision and no ability to distinguish colors or see things clearly. Others have lost their sight completely and doubt whether they can take photos at all.

Maria Iturbe.

“Many students are skeptical when they start,” Iturbe says. “They say: ‘Why should I take photos if I’m blind?'”

But the point of the class, says Iturbe, is to address these insecurities, and convince people that they can overcome their fears and do something completely visual. And in that sense, teaching a class of blind students isn’t so different from any amateur photography class.

“It’s a psychological process when you start,” Iturbe says. “You say to your students: ‘You’re going to do this activity which no one— including yourself— thinks you can do.'”

What her students eventually learn is that photography isn’t about what the world looks like. It’s like the images that many of her blind students still see when they dream.

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

At the beginning of the semester, Iturbe hands out cameras, which are loaned to students for the duration of the course. She then explains the fundamentals to her students, some of whom may never have used a camera before. She teaches her students to shoot by imagining their body as a tripod, centering the camera on their forehead or waist to find an axis on which to shoot.

Photo: Ojos Que Sienten

Shooting Without Sight

But how do her blind students find images to shoot? By relying on their other senses.

“When we go to the street we ask, ‘What do you smell? What do you hear?'” Iturbe says.

If it’s a portrait, students touch their subject. If it’s a landscape, they ask assistants in the class to describe a student’s surroundings before the photographer composes the shot.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

It’s a message she takes to hear in her own teaching lessons. She often needs to find metaphors for photographic concepts that make sense to people who may not ever have been able to see. To describe the concept of focusing, for example, Iturbe will use the metaphor of a radio dial, which you twist to ‘tune’ in a station. For depth-of-field, she’ll stand in a line with class assistants and ask them to determine who is standing first, second, and third by listening to their voices. Depth of field, she’ll teach, is choosing which voice to focus on.

The approach seems to work. Her students have taken some remarkable photos: a puddle which appears to probe and stretch the viewer’s senses of perception; a portrait of a monkey in a serious pose.

“They’re not perfect shots with every detail,” she says. “They’re shots that you can feel. And they take you to places you’re not used to.”

Photo: Ojos Que Sienten

The Teacher Becomes The Student

To that end, she notes,the classes have had an outsized impact on her own architectural photography, teaching her how to employ her non-visual senses when shooting. Her students have taught her not just to see the photo, “but live the photo.”

She has learned to think about photography without using her eyes.

Now, Iturbe commonly will blindfold herself and herself when she takes a portrait, using her sense of touch alone before taking a shot.

“The connection is different because it takes away just the visual part, and you can see that in the portraits,” she says.

We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

Another project inspired by her teaching involves X-raying purses, which results in images that can only be seen in their totality at the end of the shoot

“We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

That’s something that teaching Ojos Que Sienten has taught Iturbe. In an age of endless distraction, we may look, but we’re no longer seeing. Thanks to the lessons her students have taught her, Iturbe has become a better photographer.

“It’s changed me a lot,” she says. “I’m now more present, both in the shot and in life.”

Essays

My Threesome With An Eating Disorder

Dating is hard. Dating while trying to keep your anorexia in check is even harder.

First date jitters are normal. But when you’ve spent your life wrestling with an eating disorder, those jitters can quickly overpower you.

On my first date after a long hiatus, I was consumed with anxiety, not about my date, but about the menu. Instead of worrying about witty banter, or getting to know my date, I spent all my time trying to figure out the calorie content of each dish. Would I go over my calorie limit if I ordered a cocktail? If I asked him to split an entrée, would he think I was cheap? Would it be weird if I ordered something off the kid’s menu?

Fighting against the tidal wave of neurotic thoughts, I finally managed to order a salad.

My date immediately scoffed. “Oh, you’re one of those girls.”

Is it too late to swipe left?

How To Tell Your Date About Your Eating Disorder?

Telling potential love interests about my illness is something I’m never ready for, never quite know how to do. When’s the “right time” and how should it be done? If they ask me to dinner, should I say I’d rather go to the park? If I have to cancel my date because my body dysmorphia suddenly renders me incapable of leaving the room, should I explain why, or risk seeming unreliable? Would it be better just to put it on my dating profile and be done with it:  Hi, I’m a Virgo, my Hogwarts House is Hufflepuff, and I’m battling anorexia.

I’m not ashamed of my illness—I’m managing it as best I can, and actively working to be healthier. But when you tell someone you have anorexia, it changes their opinion of you: suddenly, instead of being the woman who can quote from every line from Moonstruck, you’re now the woman with a mental illness. Both things are true about me, but I feel like I have to choose between the two—to appear normal, or to appear ill.

You can tell someone what an eating disorder is, but they’ll never be prepared until they experience it.

And that never necessarily goes away. You can tell someone what an eating disorder is, but they’ll never be prepared until they experience it.

In my last relationship, I met my significant other at a conference where I led a panel my first-hand experience with anorexia. Afterwards, I was deeply touched when he came up to me after and told me how powerful my presentation was. But two years later, at the bitter end of our relationship, he cited my eating disorder as a reason. “You knew what you were getting when you met me!” I shouted at him.

He shrugged: “I thought you were over it.”

Meet Edna

I gave the violent being inside me leeching off my body the name Edna.

According to the National Association of Anorexia Nervosa and Associated Disorders, at least 30 million people of all ages and genders suffer from an eating disorder in the U.S. I am one of them. My severe eating disorder affects my both my physical wellbeing and my emotional health, and spills into every aspect of my life, including dating.  Eating disorders have the highest mortality rate than any mental illness, yet I am still called one of those girls for ordering a salad.

I’ve had an eating disorder since I was fourteen years old. It started as bulimia, then turned into anorexia by the time I was 18. No one ever told me about eating disorders, so I didn’t know I had one: I only knew that something was wrong with me, a deeply-rooted internal wound I could not reach. To describe what was wrong with me,  I gave the violent being inside me leeching off my body the name Edna. It was a coping mechanism of sorts: these thoughts are so intrusive, so never-ending, it’s like they’re coming from another source, so giving it a name helped me deal.

Author Ellen Ricks.

An Uncomfortable Love Triangle

Edna was, and still is to this day, a constant voice in my head. She tells me what to do, what to eat, and how much to weigh. She calls me names: fat, lazy, unlovable. When I cave to her wishes, she holds my hair back while I throw up, telling me what a good job I’m doing. And when I’m in a relationship with someone… well, like it or not, they’re in a relationship with Edna too.

When I’m in a relationship with someone… well, like it or not, they’re in a relationship with Edna too.

So when I date, what my partner might want me to do is the exact opposite of what Edna wants. If they want me to eat, Edna wants me to lie. If my partner tells me I’m beautiful and sexy, Edna tells me I’m hideous. It’s a constant tug-of-war between a boyfriend who wants to save me, and the illness that wants to consume me. And both of my partners are powerfully jealous of one another.

So I suppose it’s no surprise when the men who tell me I’m beautiful and brave eventually call me suffocating and a burden. I imagine it must have been hard to watch me slowly kill myself by loving an illness over them. But Edna doesn’t want to share me.

Dumping Edna

A few months ago, I was talking with an ex of mine when he said something insightful about my illness. “You’re like a junkie,” he told me. “It’s difficult to be in your life.”

I flinched. The comment hurt, but he was right. I am very difficult to be with because I love Edna more than anything else in my life. I’m stuck in my own abusive relationship: I keep coming back to Edna, even though I know she could one day kill me. And when I do so, I did not choose my mental illness, but I made a choice to not get better.

I feel like I’m finally ready to ditch the third wheel and swiping right on a healthier me.

After many years of failed romantic relationships, forging a healthy relationship with myself felt nearly impossible. But I think I’ve finally learned that being well is like learning a language or playing an instrument: it’s a skill.  It takes a lot of practice, and you have to practice every day. I started out being terrible at stability, but with years of practice, I’m slightly less bad. And I hope that means something.

After years of falling for the unwell voice, I feel like I’m finally ready to ditch the third wheel and swiping right on a healthier me.

Essays Uncategorized

How I Became A Pink Person

I never really liked the color pink. But then I was diagnosed with breast cancer, and pink became the color that connected me to fellow survivors.

The first time I saw what cancer looked like I was in a science museum with my kids. The exhibit, which focused on microbes, had floor-to-ceiling images of cancer cells and microscopes set up to take a closer look at these rogue cells. I was fascinated and horrified all at once.

This was a few months after I was declared NED, or “No Evidence of Disease,” after a three-year fight for my life. In November 2012 I was diagnosed with Stage IV inflammatory breast cancer. And standing there in the windowless space, staring at the spiky microtentacles of the cancer cell, brought me back to the moment I found out I had breast cancer.

My mind could not process this invisible thing that was ravaging my body. Hearing the doctors talk about cancer cells and tumors and the rate of growth was overwhelming. How could these cells—this cancer—be doing all this damage all while I was at the park with my kids, brushing my teeth, making dinner? Seeing a scan or reading a chart detailing my tumor’s cellular makeup didn’t make it any more real.

Becoming A Pink Person

Enter the color pink. I had never been a pink “person.” It was just another color, something I associated with candy or ballet tutus or my grandmother in Florida. But suddenly pink became something tangible, something to touch and to see when everything else in my world seemed either colorless (chemotherapy) or invisible (radiation). Pink became the color of my cancer, the color of my world.

When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it.

And it gave my family and friends and those around me something to rally around, something to say: this is what I’m fighting for.

Pink did something else. It gave me a touchstone to other patients and survivors. People don’t realize how isolating and lonely it is to be so ill, how you can be constantly surrounded by people but feel so alone. When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it. Felt it themselves, watched someone they love suffer, supported someone into survivorship, said a heart-wrenching goodbye. It’s almost a physical sign: we’re all in this together.

We don’t, by contrast, bond over cells or, worse, crazed tentacle-covered blobs.

A Color That Connects

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds. I have a collection of pink pins given to me by total strangers who support breast cancer research. One is a slim metal pin studded with deep pink rhinestones, a gift from a woman in a restaurant in California. Another is a soft, light pink fabric ribbon from a flight attendant in New York who wore it to support her colleagues. One is from a march in San Jose, an oversized neon pink metal pin that takes up an entire buttonhole on my shirt. I treasure them but also feel it’s my duty to pass them on, like a baton in a relay race. For me the color pink is a reminder that we are all fighting, recovering, persevering.

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds.

Should I embrace another color now that I’m in remission? Something classically optimistic like green? Or purple, the universal color of cancer survivorship? People ask me this. But the color pink and breast cancer will always be a part of my life in some capacity. I have the BRCA gene that puts my kids at risk for cancer if they test positive for the gene. That makes me pink pretty much forever. To me it’s a reminder to be vigilant, and to never forget. Last year, 250,000 women in the U.S. were diagnosed with invasive breast cancer.  More than 40,000 women are expected to die from breast cancer this year in the U.S.

Until that number is zero I will be wearing pink, in all shades.

Health & Fitness

How To Survive Your Child’s Cancer Diagnosis

A child getting sick is every parent's worst nightmare, but by keeping vigilant and accepting the support of others, you and your family can get through this.

Your child has cancer.

On January 29, 2015, Brandi and Mike Matthis of Baton Rouge, Louisiana heard that devastating sentence about their daughter, Alli, who was six at the time.

Alli was so exhausted she couldn’t walk from the sofa to the fridge for a snack. Her pediatrician said it was anxiety and wanted Alli to have a consult with a psychologist before she would do a blood draw. However, Alli was acting totally unlike herself and Brandi’s intuition told her something was seriously wrong.

Two days later, mom got Alli in to see a pediatrician, a family friend. He did a blood test that day: Alli had Acute Lymphoblastic B Cell Leukemia.

“Her white blood count should have been between 5,000-10,000,” Brandi says. “It was 500,000.”  Alli’s organs were starting to shut down and she was in danger of having a stroke. The local hospital airlifted her to St. Jude Children’s Research Hospital in Memphis where she remained for the next 10 weeks with Brandi.

The next couple of years was an upsetting whirlwind of weekly chemotherapy treatments both in Memphis and at a satellite of St. Jude’s in Baton Rouge. The chemotherapy for Alli’s particular type of cancer should have been straightforward and not terribly harsh. However, Alli’s genetic makeup was unusual and made the chemo even harder on her body than most. She dropped below 55 pounds and could not walk for the next two years. A couple of times her reaction to the treatment was so severe it nearly killed her.

But Alli survived. Today she walks on her own, goes to school every day, and has been cancer-free for more than a year.

So how do you make it through a parent’s worst nightmare? Here’s what Brandi says got them through their child’s cancer diagnosis.

A blonde s kissed by her daughter on the cheek, who is wearing a headband because she is undergoing cancer treatment.

Brandi and her daughter Alli during treatment.

Accept Help and Gifts

Some people would rather do everything on their own. But if your child has cancer, Brandi warns, this is not the time to go it alone. Whatever people offer; accept it.

For two years while Alli was in treatment, friends put together a meal drop-off schedule and a cooler sat on the Matthis’s front steps for deliveries. It was a small thing, but it made a huge difference: it means that for every night for two years, the Matthis family never had to think about making dinner.

Have pets? When Godiva, the Matthis’ young, energetic dog, needed more exercise than they could provide because of Alli’s treatment, another friend set up a private Facebook group of volunteers. They came over and took Godiva on long walks or brought their own dogs over to play with her in the backyard so she was too tired to be a concern. While Brandi had briefly considered rehoming the dog, both daughters were devastated at that possibility. Saying yes to a group of volunteers who let themselves into the backyard every few days meant that didn’t have to happen.

A girl without hair in the midst of chemo treatment pets a brown dog.

Alli and her dog, Godiva.

“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good.’ When your child is going through something so traumatic [as cancer], say yes.”

If you are horrified at the thought of allowing a friend, acquaintance or even a stranger to spiff up your home for free, let that go. Don’t stop anyone from unloading and loading your dishwasher or helping you fold laundry. These small bits of help will be life-savers, because chemo makes the immune system weak and accepting cleaning help means your child is less likely to pick up a life-threatening infection. “Someone even offered to come over and sanitize the house before we got back from a chemo treatment at St. Jude’s,” Brandi says. “And I said yes.”

As for gifts, don’t worry about a sick child getting spoiled. If someone asks for your address because they want to drop something off, give it to them. These are not normal times. Whether it’s a coloring book, a deck of cards, a fancy dress or a gigantic inflatable unicorn that shows up on your front lawn with a loving note, the distraction of opening a present can go a long way with a sick child.

“When people ask to do something for us it may be our nature to say, ‘I got it. I’m good,’” Brandi says. “When your child is going through something so traumatic, say yes.”

Question The Doctor

You are your child’s advocate, so it’s your duty to understand her treatment protocol.

“You have to ask questions,” Brandi says. “I don’t care if you have to ask 3-4 times. You ask them until you have understood the answers.”

“Even at an amazing hospital, people are human and they make mistakes. You are your child’s voice. You have to be on top of everything.”

When you pick up medications for your child,  make sure they have given you the right medicine and the right dose. Several times Alli’s doses were off; Brandi only caught it because she kept a journal of everything Alli was taking.

“Even at an amazing hospital, people are human and they make mistakes,” Brandi says.  Be sure you know what’s going on at all times and make sure every doctor, physician’s assistant, nurse and pharmacist is correct about your child’s treatment. Your child’s doctor has a lot of very sick patients, but you have one very sick child. “You are your child’s voice. You have to be on top of everything,” she says.

But Remember: Google Is Not A Doctor

Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.

Looking up your child’s diagnosis and prognosis may be tempting, but since every child responds to treatment differently, it may not be wise. Alli had a tough time with a treatment that was supposed to go smoothly. Some children sail through treatments that are harsh on others. Google can devastate you or give you a sense of false hope at the most vulnerable time in your life. You don’t need that.

Research Hospitals Before Treatment

Once your child starts a treatment protocol, whether chemo, radiation, surgery or all of the above, you cannot change where she is being treated unless that treatment has failed. That means picking the right hospital from the outset is key. Discuss the options with your pediatrician, take notes, and make a list of the pluses and minuses for each.

Brandi says her family was lucky because St. Jude’s has a satellite affiliate in Baton Rouge, so Alli only needed to go to Memphis for treatment periodically. And when she did, Brandi and Alli stayed at the Ronald McDonald House along with other families whose children were receiving cancer treatment at St. Jude too. Ronald McDonald House, which does not charge for accommodations, was an incredibly supportive environment for the Matthises, allowing them to face some of the roughest spots of Alli’s treatment surrounded by people going through the same thing.

A little blonde girl smiles as she holds up a certificate showing that she has successfully undergone chemotherapy.

Alli posing with her certificate declaring her cancer-free.

Take Care Of Your Family’s Mental Health

Beyond the pain and discomfort of treatment, your child will navigate a forest of powerful emotions as they go through treatment: fear, anxiety, and uncertainty. Your child may also make friends at the hospital who don’t survive, as Alli did. “I don’t know how Alli will process that,” Brandi says. “It was devastating and one of the reasons why I had her see a child psychologist. I didn’t want her to keep all of that in and then explode when she’s 16.”

“If you have a religious faith, go towards that. If you don’t, go towards the people you love.”

If psychological services are available to your family and your child, take advantage. Don’t burden your child with negative feelings you can address with a professional, a friend, or a clergy member. “If you have a religious faith, go towards that,” Brandi says. “If you don’t, go towards the people you love.”

The Lighthouse Family Retreat a faith-based organization that helps families of every denomination get through childhood cancer, was a big help to the Matthis family too and they attended two week-long beach retreats. Ask your child’s doctor or your clergy about other organizations like it that can help give you strength while your family lives through childhood cancer.

Essays

In Defense Of Oversharing

When you live with a chronic condition, getting comfortable with vulnerability may be your greatest strength.

When a beloved pet, like a cat, gets sick, it hides under the bed and refuses to be touched.

It’s the same for people. When we’re diagnosed, there’s an instinct to turn inward.

When I suddenly began experiencing pain as the result of a rare spine defect, that was what I did: I turned inward.

I was completely bewildered by the abruptness and severity of the symptoms. It felt surreal: in one moment, I was going for runs along the Charles River and picking out the right blazer for speaking engagements. In the next, it hurt to walk a block or brush my hair.

How could things have gone so terribly wrong?

Keeping My Chronic Pain Secret

I desperately wanted the pain to be abnormal, and so I treated it accordingly—like an unwelcome houseguest that might leave if I ignored it. To acknowledge that my health problem was real or was serious, whether to myself or someone else, felt like a betrayal.

It’s hard to talk about a hurricane when you’re in the middle of it; I was busy battening the hatches and trying to survive. If asked how I was doing, I couldn’t spit out the simplest, most cursory of truths—“I have a back problem”—without wanting to sob. It was too real, too raw.

So I avoided telling anyone about the extent of my health issues and how much I was struggling, unless it was completely unavoidable. Think: my boss, my boyfriend, my roommates.

The Hard Price Of Privacy

The result of my secrecy? My pride and privacy remained intact, even through chronic illness, but inside, I felt just so utterly alone.  As months passed and my normal life—working full-time, exercising, volunteering, social plans—became nearly impossible, it became harder to pretend things were OK.

Once the one year anniversary of my symptoms’ arrival came and went, I realized the pain was here to stay, and that I didn’t have much choice but to open up.

For one, I needed people to know what was me and what was my health condition. If I flaked out on weekend plans, it wasn’t because I was unreliable: it was because I was having a bad pain day. If I needed help lifting a bag, it wasn’t because I was a diva: it was because my shoulder muscles were being uncooperative jerks.

I discovered I needed the support of the people I’d been keeping out of the loop. My friends and family members aren’t mind-readers: I realized that if I didn’t open up and tell them what was happening, I was shutting them off from truly understanding me, and therefore, helping me.

I also became indignant. When I became sick, I was the healthiest and strongest I’d ever been, and since, had done everything I humanly could to cure myself. In short, I’d done nothing wrong. My birth defect wasn’t my fault, so why should I live in shame because of it?

Sharing about my chronic pain was an act of rebellion and defiance.

A beautiful girl in an aqua tank top with brown hair and glittery earings smiles and looks up.

Emily Lemiska. Photo: Ars Magna Photography.

Opening Up Online

So I began to talk about what I was going through.

It started with Facebook posts and duck-face selfies in hospital gowns. Life is a mixture of ups-and-downs, so I was careful to share both my hardships (like getting frustrated with an insurance coverage denial), and the triumph (like figuring out some yoga poses that didn’t hurt). Eventually, I started my own blog and began submitting the occasional story about my experiences to small news sites.

Turns out, oversharing is amazing.

When I was honest and candid about my new reality, people rallied around me. If I posted about having a particularly rough patch, they knew to call and check in. When I explained the mechanics of the defects in my neck and how it affects my body, people began to understand and anticipate my limits without me having to remind them what I could and couldn’t do.

I also finally felt seen. Every human being wants to be understood and validated. We want to feel connected. I needed people to recognize the full picture. Yes, I am still the girl who laughs too hard at terrible puns, who puts her whole heart into her work, who is obsessed with her cat.  But I’m also the girl who lives with a disabling health problem, who has had to become braver than she ever wanted to be. I needed to share the full picture of me: the good things and the hard things.

Giving My Pain A Point

But the most wonderful thing of all about oversharing? It helped people.

I started getting comments about the stories I wrote, emails from strangers. “To read about other people sharing their stories makes something good happen in me,” said one person. “Everything that was written sounded like my EXACT story, feelings, and words. It’s not often someone knows exactly what you are going through,” wrote another.

In sharing, my pain had a point.

I’d also hear from friends and acquaintances who were going through something similar or knew someone who was—people I had no idea could relate to my experiences—and wanted to talk.

This ability to helping others feel less isolated, in whatever small way, began to make oversharing feel not just like a choice, but a responsibility.

In sharing, my pain had a point.

How To Share

Of course, there is a right and wrong way to approach sharing. You need to pick the right time, place, and person. It’s easy to alienate and overwhelm people with details about chronic illness, so instead of revealing your entire life story in one breath, share a tiny bit of vulnerable information at first. Let them ask follow-up questions or wait until they open up with you about themselves; that way can reasonably assume they’re interested in hearing a bit more.

It’s also important to consider why you’re sharing personal details. Are you doing it because you just want to be honest, or is it because you want to vent or get sympathy? When you’re opening up, make sure you’re doing it without a particular agenda. The only good reason to share is the simple desire to be authentic.

As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.

Once you figure out the best approach, give it a try. It doesn’t have to be about your health—it could be anything. What is the thing that makes you feel different or alone? What is the thing that makes you feel passionate or excited? What is the thing that makes you feel vulnerable or scared?

Talk about it! Maybe even… overshare about it. As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.


Even though Emily had to leave full-time work because of her health, she now works part-time as Director of Communications for the U.S. Pain Foundation, an organization that believes in the power of patients telling their stories as a way to advocate for change. To learn more about the U.S. Pain Foundation or view its INvisible Project magazine, which highlights the stories of people with pain, click here.

Top photo credit to Michelle Gardella Photography.

Essays

I Tried To Quit My Job Because Of Psoriasis, But Thankfully, They Wouldn’t Let Me

Through their support during my worst psoriasis flare-up, I got a glimpse of the way more people should be supported during their health crises.

This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.


Ever since my sophomore year at university, I wanted to become a church minister. Up to that point I didn’t have a clue what I wanted to do when I “grew up.” But that summer, through a mission project in San Francisco, I discovered my passion for spirituality and helping others. After that, motivated by a new sense of purpose, I worked diligently to complete my undergraduate degree with an eye to apply to graduate seminary education. And I wasn’t going to let anything get in the way of reaching my goal… especially my stubborn, severe case of psoriasis.

The dermatologists at the University of California, San Francisco (UCSF) first diagnosed me with psoriasis at nine years old. The disease inflames the skin by overproducing skin cells, leading to raised, red, itchy plaques that often flakes off in silvery white scales. Psoriasis is the most commonly diagnosed autoimmune condition, with about eight million people living with it in the United States alone, but despite this, it is rarely talked about, especially publicly.

My case of psoriasis is considered severe because it covers over ten percent of my body surface area. Even though I tried to hide it, I was always self-conscious about it. I could feel people staring at the visible patches on my hands, scalp, ears, legs, and arms, and imagined what they were thinking: is he contagious? Can I catch it?

I did everything I could to hide my condition, even wearing long pants and sleeves in the summer. You wouldn’t catch me dead at a public pool. Even so, I took an overcomer’s attitude in life believing I could do anything I set my mind to.

The Worst Psoriasis Flare-Up

Despite my ongoing battle with psoriasis, I completed seminary and successfully interviewed for my first church position as an associate pastor in the San Francisco Bay Area. Things went well, and I felt my life was on track, but five years later, my psoriasis spiraled out of control, and I found myself virtually covered from head-to-toe with unsightly flare-ups.

I tried in vain to find any semblance of relief. I couldn’t sit still, or focus on my computer, for more than a few minutes, due to the discomfort and inflexibility of the inflamed skin. I felt self-conscious when meeting parishioners, who couldn’t help but notice the plaques covering my skin when we shook hands. At nights, I battled insomnia from the intense itchiness; during the days, when I was trying to fulfill my office hours, I was lethargic and listless.

Psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?

At that point, my dermatologist told me he no longer felt he could handle my case alone. He referred me to a preeminent psoriasis specialist back at the UCSF Psoriasis Treatment Center for a second opinion. The nearest appointment was two months away, but my psoriasis had turned every moment into agony. How could I continue to wait and work through the next two months?

An Asian man wearing glasses dressed in a purple polo shirt.

Howard Chang.

Should I Quit My Job?

I remember the exact moment that psoriasis flare broke me down emotionally. I was sitting at my desk in the living room, trying to work on my laptop after dinner, when I suddenly brought my hands up to my face and began to sob.For the better part of an hour, I cried, until my wastebasket overflowed with used tissues. Concerned, my three young children took turns trying to comfort me, with a hug or a glass of water. I felt sorry they had to see their father in such a sad state, but I just couldn’t take it anymore.

Later that evening, I decided to resign my post at the church. I felt hopelessly inadequate to perform any of the duties expected of me at an acceptable level. Worse, I thought that if I continued on my current course, I might have to undergo the humiliation of being fired. I knew my hire split the leadership, with one deacon leaving the church a few months after I started, and I had since been grilled about dropping attendance numbers in the church group I oversaw. And that was before I had head-to-toe psoriasis. Why would they possibly keep me on now?

The next day I drafted my letter of resignation and made an appointment with my supervising pastor to let him know my decision.

I had head-to-toe psoriasis. Why would they possibly keep me on now?

Finding Support For Psoriasis

But my resignation did not go as planned.

As I walked into the meeting with my pastor, I imagined how it would go. I would explain to him all the ways in which keeping me on staff weakened the team. The pastor would then tell me how sorry he was I felt that way, but of course, he understood my decision, and even agreed with it. It would be best for everyone if I moved on.

But that’s not how it went. To my great surprise, the church’s leadership wouldn’t accept my resignation. The pastor wouldn’t even take it from my hand. Instead, he showed compassion. He asked me how my psoriasis was affecting my work, and how he and the staff could support me so I could make it through this difficult time.

My church’s support wasn’t just empty words. It turned out one of my colleagues had a family relation to the dermatologist I needed to see at UCSF. She got my appointment moved up with him to the following week.

To my great surprise, the church’s leadership wouldn’t accept my resignation

Moreover, I was immediately granted a three-week leave of absence, to rest, recover, and get away from the stress that contributed to my psoriasis flare-up. I decided to take a seventeen-day cruise through the Panama Canal with my parents and ten-year-old daughter, which in addition to the relaxation it would offer would allow me to sunbathe: an ancient remedy for many skin conditions.

During that cruise my immune system finally started calming down with some help from a new treatment prescribed by the UCSF dermatologist. The sunlight not only helped to improve my mood and skin, I also saw it as a symbol of a new way of seeing my psoriasis and work.

The Unintended Benefits Of Psoriasis

For decades, I saw psoriasis as an enemy to overcome. I hid it as much as possible from others, not wanting their sympathy or pity. Wanting to be ‘normal’, I pretended I didn’t have psoriasis. If someone had asked me what benefit I received from having psoriasis I would say absolutely none. But after I returned from the cruise, I found myself better able to accept my psoriasis. Sure, I’d rather not have it, but like most of the hardships we are burdened with in our life, there were ways in which it was a blessing in disguise.

For one thing, psoriasis allowed me to truly see how strong the support of my community was. During my most recent attacks, I had feared they would resent me for not being able to do more for them. I saw my role to help others, not to be helped: I officiated their weddings, visited them in the hospital, and oversaw the burial of their loved ones, but I didn’t think they had any obligations to me. But that’s not the way they saw it. My church–leadership and parishioners both–believed it was time to give back, with one colleague even going so far as to offer me a free flight to Toronto to see a well-known Chinese herbalist who specialized in skin conditions. I grew closer to those in my church community as a result of the shared experience.

My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases.

My condition also brought greater awareness to those living with chronic health conditions. I began to regularly share about the ups and downs of my experience with psoriasis when speaking on Sunday mornings or writing newsletters to the congregation. In the church where I worked, health conditions were often kept secret to avoid the questions, embarrassment, and unwanted attention that they might bring. My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases. It even turned out that a few church members had their own skin diseases, which they had never told anyone about.

Through my church’s support during my psoriasis nightmare, I became a better person and a better pastor.

Finally, through my church’s support during my psoriasis nightmare, I became a better person and a better pastor. A lot of times when someone comes to you with a problem, you want to fix it for them, but that’s not usually what they’re after: tangible help is nice, yes, but what they really want is is your understanding and empathy. By following the example my church community set, I was able to better show compassion for my fellow parishioners, supporting instead of trying to fix, and listening instead of minimizing the feelings of others.

In my worst psoriasis flare-up, the people closest to me showed me support and kindness I didn’t feel I deserved—especially in not letting me quit my job. Through them, I learned that my success depends not only on me, but also on my community.

I wouldn’t have it any other way.

Health & Fitness

Wheelz in the Air

To Aaron Fotheringham, founder of Wheelchair Motorcross, spina bifida isn't a curse. It's an opportunity to blow people's minds.

Aaron Fotheringham prefers to think of his wheelchair as something he rides on, not in.

At 26, the Las Vegas native is the world’s foremost athlete in the sport of WCMX, or wheelchair motocross. Like professional skateboarding or BMX, it involves using a wheelchair to do daredevil tricks and jumps, with points awarded for technique, difficulty, and flair. Fortheringham literally invented the sport; he initially called it “hardcore sitting.”

“I love being on the chair. I’m able to pretty much have a skateboard with me everywhere I go,” quips Fotheringham. Another personal preference: he goes by “Wheelz.”

To see Fotheringham, who was born with spina bifida, a defect of the spinal cord, launch himself airborne at high speeds is a true spectacle. More often than not, society couches the disabled as individuals in need of protection and supervision. In a ten second clip of Fotheringham soaring off a mega ramp, then landing, that stereotype is wholly ruined. It is powerful stuff.

It was exactly this sort of clip that kick-started Wheelz’s career.

How To Go Viral On YouTube

On July 13th, 2006, at an extreme sports summer camp, a young Fotheringham was recorded landing his first backflip. A counselor there had the good sense to upload it onto YouTube (“Aaron Fotheringham: FIRST backflip in wheelchair!!”), where it quickly went viral. Within months, Fotheringham had his first sponsor, a German tires manufacturer called Schwalbe. Then came invites to show off his skills around the globe. More sponsors offered their services, like Box, a custom wheelchair maker in Texas.

All the while, Fotheringham was pushing the envelope, working on harder and harder feats. Following the backflip was a frontflip, then a double backflip, a 360, grinds and other bodily contortions. This August he completed for the first time something called a “flare”, a backflip 180, at a massive ramp in Woodward, California, where he had landed his first backflip twelve years earlier.

Pain is a constant. Fotheringham has broken his front teeth out several times; he gets them super-glued back in. Because he’s anchored to his chair, he receives more head injuries than your average skateboarder, who can land on their knees; when he falls, his head is pitched groundward to the side; he has suffered more concussions than he can count. Between thirty and thirty-five chairs have broken beneath him (his new custom chairs are made of aerospace-grade aluminium alloy).

Yet despite it all, each drop in remains as scary as the first. “Your heart starts going crazy and you’re telling yourself, ‘Just chill.’ But looking down, this thing makes you sick to your stomach. You need to shut the brain off and be completely present.”

Learning To Wheelchair Skate

Fotheringham was eight the first time he attended a skate park.

He remembers his first drop in. His older brother Brian helped him get to the top of a quarter-pipe. He leaned over, letting gravity set in. He ate it. But he kept returning, motivated by dreams of one day riding alongside all those guys he watched on TV during the X-Games: legends like Travis Pastrana, Bob Burnquist and Danny Way. A

fter he mastered the quarter-pipe Fotheringham moved onto the half-pipe, then the next biggest ramp, and the next.

“I was pumped,” he recalls of those early days. “I was terrified, too, though. I remember just being constantly so terrified.”

Eventually a man at the park named Joe Wicker, “a super rad dude with long hair”, began informally coaching Fotheringham, who progressed quickly.

One nice aspect of growing up in Las Vegas was its high concentration of skate parks “within pushing distance” and after Fotheringham had exhausted all of the ramps at one park, he’d move to another. For the skate-obsessed adolescent, “each new park was like an episode in a video game.”

Aaron Fotheringham, in a rare shot obeying the laws of gravity.

“A Great Opportunity”

In his homelife Fotheringham’s disability hardly registered. He grew up with five siblings; he was adopted. His parents treated all of them the same. “They wouldn’t give me any special treatment,” he remembers.

His school wanted to, though. They tried to put him in an adaptive PE class but the young Fotheringham rebelled. “I didn’t want to be treated specially. It just felt like, ‘Why can’t I just be with all the other kids?’” He stayed in the regular class.

Yet, despite doing just that, Fotheringham did not get into wheelchair motocross with the intent of challenging stereotypes. But he is happy to change minds, to convince people to “see the chair differently” (he once smilingly described spina bifida as “a great opportunity”).

“Being able to help that stigma get pushed to the side is huge,” he says. “That’s kind of become my goal, to push the message that a wheelchair is more of a tool, something to help you succeed, rather than a ball and chain.”

“A wheelchair is more of a tool, something to help you succeed, rather than a ball and chain.”

In his case, actions speak louder than words.

At the Nitro Circus, an influential extreme sports touring show put on by Travis Pastrana, tens of thousands of people see Fotheringham do his thing every year. He has toured with the show since 2010, from Auckland to Denver. “It’s such a rush to see the whole crowd there and have everyone just cheering. It’s a cool feeling,” he says.

It was through the Circus that Fotheringham befriended Pastrana, his childhood idol. The skateboarder once said of him, “Aaron ‘Wheelz’ Fotheringham is really cool. He’s got the most dry sense of humor you could ever imagine. First time I saw him, he hit the ground. He’s laying there, [yelling], ‘I’ll never walk again!’”

Catching some air. Photo: Aaron Remkus

The First Try Is Always The Hardest

Fotheringham’s success, though a dizzying whirlwind, has been the unlikely realization of a childhood dream. In creating his own sport out of  (and through) thin air, in shattering all preconceptions of what a kid in a wheelchair could accomplish, Fotheringham has lived out his fantasy.

He’s still living it. He continues to tour with the Nitro Circus. He and others are trying to get WCMX into the Paralympics.

Alongside nurturing a successful speaking career, Fotheringham was recently married. He is also, of course, always among ramps working on new tricks.

“The first try is always the hardest,” he says. “After the first try you can figure out what you need to do. But it’s about building up that courage to actually go for it. The first time is the hard part.”