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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.