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Essays

The Scars Mean Life

Working as a photojournalist in other countries has taught me that the true meaning of my keloid scars.

Life has a funny way of reminding us that, underneath cultural boundaries and deep-seated perceptions, we’re really not all that different. No matter the color, make, or mark of our skin, we seek out the basics: family, shelter, food, water. It should be easy to make those connections, but sometimes it takes something a little out of the ordinary to break the barriers.

Since my late teens, I’ve had thick, red, raised scars on my back and shoulders, and now have a large, expanding scar dead-center on my chest. It’s due to a heredity condition which causes severe keloid scarring if I get a cut, burn or any other wound. I have vague memories of being a preteen without scars: summers spent living in tank tops with clean, “normal” shoulders bared to the world. But the memories are shadowy, and there’s a part of me that feels like I’ve always had this itch on my skin, even if I have photographic proof that there was, indeed, once a before.

Of course, the scars prompt questions, so as a young woman with this condition, I’ve dealt with self-consciousness. For years, it was a struggle to simply wear a tank top in public, because people would point and make comments. Standing in line at the post office one day, an old man told me I should be ashamed to show my scars. Since then, I’ve actually made a point of wearing tank tops more often–why should I let people with cruel streaks that wide control my body? But despite being outwardly defiant, I still noticed the people staring.

Now I’m 30–a photojournalist, who often works abroad–and I’m starting to think my days of being self-conscious are behind me. It’s taken stepping far outside my normal culture, but I think I finally appreciate my scars. Other countries just don’t have the same hang-ups about scars that we do.

It started in the South Pacific. While shooting a project in a remote, rarely-visited atoll, a young village boy approached me. He asked if he could trace my scars with his fingers. When I let him, nearly a dozen friends followed. Suddenly I had little tan hands running over my shoulders, arms, and back. To these kids, my red swollen scars were tribal markings; a source of interest, not a thing of shame. Sunburned, with my cameras piled in my lap, I sat in the sand under palm shade and found myself getting teary-eyed at the easy acceptance these children had for me, when people from my own country found it so hard.

Last autumn, I found myself in Hokkaido, Japan, covering a fly-fishing story. The hotel I was staying at had a rich tradition of onsen, the culture surrounding the natural hot springs Japan is known for. For locals, honsen is a way of life from a young age: nude children accompany their parents into the springs, and by doing so, they learn early on that regardless of what you look like, we all have a place in the water.

Nude children accompany their parents into the springs, and by doing so, they learn early on that regardless of what you look like, we all have a place in the water.

My first day visiting the onsen, I struggled to navigate the strict, unstated rules the locals inherently knew: undress here, walk here and not there, wear your little towel on your head while you sit on a short stool and wash yourself before entering the pools. Signs were posted that tattoos were not allowed — no exceptions. This is partly to keep the yakuza, or heavily-tattooed Japanese mafia, out of the honsen, and keep the clientele safe, but other stigmas are at play too. Either way, while tattoos are forbidden, scars are allowed.

In Western culture, we’re largely uncomfortable with nudity, yet two days into my stay in Japan I found myself nude on a rooftop onsen, watching incoming storm clouds skid past a volcano at the edge of Lake Akan. I was the only Westerner I’d seen in days, and yet beyond a cursory curious glance, most of my fellow bathers didn’t seem to care about my scarred shoulders. At that moment, with the warm water streaming below me and the cold breeze ruffling my hair, I was able to recognize that my scars weren’t me in total, just part of me. Like tattoos, my scars are stories sketched on my skin, each one a vignette describing a discrete moment–an old adventure, a painful night–in the life I’ve lived.

Like tattoos, my scars are stories sketched on my skin, each one a vignette describing a discrete moment–an old adventure, a painful night–in the life I’ve lived.

As I write this, I’ve just returned from an assignment in Jordan, where the culture surrounding nudity is far removed from that of Japan. In the more rural parts of the country, long pants and long sleeves are expected on women. But there’s one big exception: floating in the Dead Sea.

As dawn broke one morning, I found myself clad only in a bikini top and capri leggings, chatting with a local on the beach as we slathered ourselves with mud before entering the water. His command of English was very limited (as was my Arabic) but we chatted amiably as we donned our grey-toned mud. At one point his eyes fell to the unavoidable scars on my shoulders and his face sobered.

“War?” he asked, all lightness gone and his eyes solemn.

In that part of the world, scars mean battle and strife, bullets, and bombs. My scars, though, reflected adventures I’d chosen to go on: wounds I’d been dealt all over the world in my job as a photojournalist: scorpion stings, flying shrapnel, a misbehaving helicopter. And for the first time in a long time, I was proud and grateful for my scars.

“Life,” I replied, grinning as I slathered on more mud.

The scars mean life.

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.

The Good Fight

The Writer Touring The World To Ensure Accessibility For All

Emily Yates is a travel writer who discovered early on that her wheelchair didn’t prevent her from seeing the world. Now she's trying to give the gift of travel to others.

Emily Yates first caught the travel bug when she was 16. That year, the U.K. resident went on a trip to Namibia, Lesotho, and South Africa with Journey of a Lifetime Trust, or JoLt, a charity that plans expeditions for disabled and disadvantaged young people. Yates was born with cerebral palsy and has used a wheelchair since she was nine. Before that trip, she’d never been outside of Europe, and she’d certainly never traveled without her family.

“It changed everything for me,” Yates said, reflecting on that trip. “It changed my outlook on what my limitations were, what my capabilities were.”

Emily Yates.

Since then, the 25-year-old—who lives in Glasgow, Scotland, and works with the disability awareness charity Enhance the UK—has learned to scuba dive in the Red Sea, participated in a scholarship trip to China, and interned in Bali. Her work as a freelance accessibility consultant, accessible travel writer, and presenter has taken her all over the world, and she’s written about her many adventures in The Independent, The Telegraph, Liability Magazine, and on her blog. She’s also hosted documentary specials on BBC3, volunteered as a Games Maker for the 2012 London Paralympics, and helped get Rio de Janeiro’s metro system up to speed for the 2016 games.

In addition to all of this, Yates also wrote Lonely Planet’s Accessible Rio de Janeiro city guide leading up to the 2016 Olympic and Paralympic games. Folks chatted with Yates about her work in Rio, what accessible travel writing means to her, and how travel options for disabled people are changing.

For readers who are unfamiliar with the term, what is accessible travel writing? What kinds of disabilities does it encompass and who is it for?

To me, accessibility isn’t just about disabled people—it’s not just about ramps for wheelchair users and where guide dogs can go. Although it is primarily for disabled people, it also can really benefit the elderly. It can benefit parents who are using [strollers] to transport their babies.

Accessible travel writing is something that benefits obviously tourists, but also the locals. For example, when I was writing the accessible travel guide to Rio, it’s benefiting the athletes and the tourists going to watch the Olympic and Paralympic Games. But it also indirectly benefited the local people out there as well, because the businesses that made themselves more accessible in order to go into the guide and to be seen as being really inclusive—of course that’s going to have a really long-term impact on the people that live there.

Why is it important for disabled people to travel?

Having that opportunity is what’s the most important. I think people, historically, with disabilities don’t feel like they can travel because previously there hasn’t been provisions to allow them to. So the most important thing is giving people that choice and that option and that autonomy to be able to do that.

And that’s something that obviously I’m really fighting for. Because in my personal experience, travel has really made me who I am. It’s made me more confident, it’s made me more comfortable with different cultures, it’s made me realize my own capabilities and limitations as a wheelchair user. And actually, my capabilities are much greater and my limitations much fewer than I thought they were before. So I guess I want other disabled people to have those experiences as well.

My capabilities are much greater and my limitations much fewer than I thought they were before [I traveled]… I want other disabled people to have those experiences as well.

How did your visit to Southern Africa as a teenager change your ideas about traveling as a wheelchair user?

There was one specific moment, I think it was two days into the trip. We were all young people from all over the U.K. with either different physical impairments or some kind of disadvantage through life. So we were all total strangers, and our task for that day was to get up to the top of a sand dune in Namibia.

There were people who were visually impaired and needed guiding up. There were people who were hearing impaired that needed to communicate in other ways. There were people like myself who were wheelchair users or mobility impaired in some way who had to crawl up or shuffle up on their bums or be carried or whatever it may be. And that to me really made me realize that it is possible to do absolutely anything, even with a disability. That way of doing it needs to be really adapted, needs to be considered with time and with patience and with effort; but it doesn’t mean that it can’t be done.

Before you went on that trip, did you ever see traveling the world as a possibility?

I’ve always had that desire, but I don’t think I quite realized how possible it was. I knew that I would be able to go to places like America—I knew that the provisions would be there for me—but I didn’t know that I would ever be able to go to the Sinai desert or Africa or Brazil. Those things weren’t really on my radar.

I think that was mostly because of accessibility and the fear of the unknown and the fear that I’m not going to be able to manage. And as soon as you realize that yes you can manage—it might take a little bit longer, it might even cost a little more money to be able to put things into place, but it is possible with the right plan and preparation and confidence—those fears flew away.

Before you wrote Lonely Planet’s accessible guide to Rio, you worked as an accessibility consultant to help prepare the city’s metro for the 2016 games. How did that happen?

I was invited out to Rio by the British consulate and I gave a presentation to quite a few government and state officials [about accessibility for the 2016 games]. There was one guy there who was an accessibility consultant for the underground metro station. He started to look at his phone and I thought, “Oh my goodness, I’ve lost him. My presentation must be rubbish.” And at the end of the presentation he stood up and said, “I’m really sorry I was on my phone, but I was actually talking to my boss. And I’d like to invite you to be an accessibility consultant for our metro system.”

And then from there I spent three three-month stints in Rio consulting the metro system, so nine months in total. After I’d done all of that I had a really good knowledge of Rio and I’d been to all of these stations. So I just happened to tweet Lonely Planet and said, “Hi guys, have you thought about creating anything in terms of accessibility for Rio?” And they got back to me. And that was that.

It is possible to do absolutely anything, even with a disability.

What was it like to research and write the travel guide? How did you figure out what you needed to write for people with different impairments?

It’s definitely one of the hardest things that I’ve done, but one of the most rewarding as well. And I always say that it’s one of the best simply because I can go around to my Nana and show her the book and say “Look Nana, I’ve a proper job and I’ve got something to show for it.”

In terms of writing for other impairments, I’m a wheelchair user so obviously the physical stuff was relatively easy—especially having lived in Rio for quite a long time before writing the guide. Three of my colleagues [at Enhance the UK] have visual and hearing impairments. And before I went and wrote the guide, I did a lot of conversing with them and they wrote me a little bit of a checklist of the stuff that’s really important to them that they always look out for.

The first five places you go to [when writing a guidebook] are a bit of a minefield. You don’t really know what to look for and you get a little bit tongue-tied and a bit caught up. But it’s that thing of practice makes perfect. Once you get into a routine it’s okay. Because the important thing really in terms of the travel guide, for me, is consistency. People who are reading the travel guide want the same information for all of the venues.

One of favorite bits in the guide is I write about my ideal accessible weekend—everything from breakfast on a Friday morning to dinner on a Sunday night. We tried to make it really fun and to add different bits for people with different interests, so I also did interviews with Paralympic athletes, and they talk about their highlights in Rio and their favorite places and what they would recommend. We also looked at different disability NGOs as well. There’s one called AdaptSurf, and every weekend they go to the beaches of Rio and they get loads of disabled people and everybody surfs. So it’s not just a travel guide, it’s kind of to do with social access around Rio as well.

Have resources for accessible travel improved since your first big trip?

As time goes on, the world gets smaller, because we’re communicating with people from other countries. With all of that, accessibility and competence around travel also improves.

I think, really, rather than resources improving and changing, what’s happened is that disabled people have the confidence to get out there and make that change for themselves. So there’s a brilliant site for example that’s called Accomable, and that’s a bit of a disabled Airbnb. They have properties over the world that are fully accessible. Things like that make a bunch of difference, which then leads to confidence for disabled people to travel, because they know that they’re going to be okay.

So it’s a bit of a cyclical thing, if you like—that with more resources, confidence builds, which then creates more resources and more confidence. I think it’s something that’s going to continually improve. Still a long, long, long way to go, but things are happening.

Top photo courtesy of Enhance the UK, republished with permission.

Essays

How Do You Talk To Your Kids When You Have Cancer?

My diagnosis is teaching me about fatherhood, and how to prepare my kids for the day when I'm not around anymore

Weeks before my son was born, I had my first seizure.

It exploded in epic grand mal fashion, turning the evening sky into the brightest rainbow I had ever seen. For a minute or two, the corner of Austin’s 3rd and Congress turned into a dance of brilliant color.

When I opened my eyes, less than a second later, I was strapped to a gurney, covered with blood.

The author and his son, Soren.

This traumatic turn of events was what led to me being diagnosed with oligoastrocytoma, a type of terminal brain cancer. But before I could even think about what this meant for me, I needed to think about what it meant for my pregnant wife–then in her third trimester– and the child that was soon to come.

I didn’t have long to think about it, though. Six weeks later, and only hours after my second brain surgery, my son Soren was born. The surgeons had only just finished closing the hole in my head with 140 staples, having just extracted the last visible traces of my tumor.

Ever since that moment, almost four years ago, I’ve been two things: a cancer survivor, and a father. I’m technically living on borrowed time, but my wife, Erin, and I do our best to keep moving forward. After Soren, we added a brand new set of twins to our already cacophonous lives, and I joined the ranks of stay-at-home dad to give myself more time to heal.

Each day brings new challenges — not as traumatic as chemo and radiation, but interesting in their own way, because beginning a family while dealing with cancer isn’t something most people have to go through.

Beginning a family while dealing with cancer isn’t something most people have to go through.

The moment my son was born, I was catapulted into the always moving, always changing world of fatherhood. Having a new child would have been difficult enough to manage in simpler “normal” circumstances, but adding the layer of this major health challenge caused the experience to go screaming past the sound barrier.

Before I had it, cancer was always a strange, black magic sort of topic to me. Until it was in my life, it was as mysterious as the stars in the sky. But every time I heard the pulsing of an MRI, smelled a radiation machine burn my skin, or felt the spark of an oncoming seizure, I had to learn a little more about how to speak about cancer–not just with adults, but to my children.

Soren at his first baseball game.

Soren and the twins aren’t quite old enough yet to fully understand the significance of my illness. They will someday soon, though. The other day, my one-year-old, Mira, looked me in the eyes and said “Hi!” I was delighted to hear her first word, but in the back of my head, I asked myself: how long until she’s asking me about my sickness?

At night, I think about what I will tell them when they start to ask about my cancer. Or maybe they never will, and it’ll always be just a normal part of their life. “My dad has brain cancer,” they’ll say to their schoolmates, as if-you-please as if I were a postman or fire fighter.

There’s a darker possibility, too. Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Right now, I’m just trying to share my love for them as openly and honestly as possible. I also want to show them that their dad isn’t afraid, even though there are private moments when I am, and think desperately about how much I want to live through this. 

And more than ever, I do want to live through this. The mere fact that I’m still alive–let alone feeling healthy now–amazes me. Yet I hold on to the deepest knowledge that, short of a major new medical advance, I am going to die of my disease someday. And yes, I am afraid of that, not just for myself, but for what this terminal diagnosis means to me and my wife and children.  

Mark, Soren, and the twins on a day out.

I work hard on my fear, and try to keep my voice level so that my wife and kids can’t hear it. Yes, my wife and I are scared shitless at times. But I don’t want my kids to sense that fear. Instead, I want them to understand: to be able to talk to them about what is going on inside of my body without focusing on the fear. 

So I talk to them about my cancer in a roundabout way. I try to teach all my kids as much about science and medicine as they are capable of understanding. New medical breakthroughs are happening all the time that could potentially cure me, so to my oldest, I’ll talk about neuroscience, so those breakthroughs will one day be grounded in something he understands, whether I’m here to talk to him about them anymore or not.  (Yes, you can talk about neuroscience with a toddler!) 

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through…

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through physically as well as emotionally. That’s why I write about cancer elsewhere, and why I’m writing this. There’s no easy way to talk to your kids about having terminal cancer. But while I’m still here, I’ll do it as best I can: with integrity, and without fear.

Because even if I die, I want my kids to one day know that because of them, I won my battle with cancer. Their presence in this universe would have been impossible without me; to have survived long enough to help give them life has already made my life valuable. This strange experience of having a body, a somewhat mis-calibrated one, a mis-created one, was a part of their life story. And  because of that, to understand themselves, they’ll need to understand cancer too.