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Disability

How A Trench Coat For Dogs Angrily Inspired A Fashion System For The Disabled

A congenital amputee herself, designer Stephanie Thomas was so frustrated by the limited fashion options for the disabled that she launched her own styling firm.

A few years ago, while shopping for pet supplies, Stephanie Thomas found a trench coat designed for dogs. Most would have laughed or hardly noticed it, but for Thomas, it changed her life. “It annoyed me,” she remembers. “I was like, ‘There are literally more clothing designs for pets than people with disabilities.”

For some years, Thomas, who was born without toes, had nurtured a passion for adaptive fashion. The hobby bordered on obsession. Soon after the pet store epiphany, Thomas embarked on a kind of fashion hunger strike: for the next year, she wore nothing but pajamas. “I just wanted to see what it was like to go into a store and see my choices limited,” she explained. “That’s what people with disabilities deal with on a regular basis.”

“It annoyed me,” she remembers. “I was like, ‘There are literally more clothing designs for pets than people with disabilities.”

The experience, which she recounted daily on a radio show (she called herself at the time the “PJ DJ”), severely impacted her life. “I gained 30 pounds. My whole social interaction skills completely shifted. That’s when I decided I needed to do something about this.”

Thomas developed the Disability Fashion Styling System, a guide for how to shop for clothes that are “accessible, smart, and fashionable.” In Hollywood, she began acquiring clients, disabled people who wanted more from their outfits than what the mundane, limited options available on the market could provide. Eventually, Thomas quit her job in media and launched Cur8ble, a consultancy and styling firm. Along with individual clients, many of whom work in film, she now regularly works with brands in producing more accessible and inclusive fashion lines. The fashion industry, which has long ignored people with disabilities, is rapidly changing, Thomas says, due, in no small part, to social media and the body positivity movement. We reached out to Thomas to hear more.

The fashion industry, which has long ignored people with disabilities, is rapidly changing, Thomas says, due, in no small part, to social media and the body positivity movement. We reached out to Thomas to hear more.

An African-American woman in a black hat dresses a beautiful disabled model in a wheelchair, also African-American.
Stephanie Thomas dressing Lauren “Lolo” Spencer, a disabled model.

Prior to Cur8ble, what was your experience with disability?

I’m a congenital amputee, born without toes. Doctors took bones from different parts of my body, such as my fingers, to develop toes so I can ambulate independently. My dressing issue is primarily with small fasteners, buttons and footwear. I like dresses and skirts but with most of the shoes that are closed-toed either the vamp on the top is too short to provide support or it’s just ugly. When you want to put on swanky, sexy shoes to go out for a night and you’re forced to wear Espadrilles or something closed-toe to have that support so you can ambulate, it sucks.

How did you first become interested in accessible fashion?

In college, someone asked me to participate in a Miss America pageant. I won and was assigned a styling coach. She hated the fact that I never buttoned my cuff. But it was hard because of my disability. Her husband was a wheelchair user and she asked if I had ever thought about clothing for people with disabilities. I was like, “That’s a thing?” She said, “It needs to be but it’s not.” Here and there were brands trying to meet the needs for people with disabilities but it was more functional then fashionable. For me it just became a hobby. I went down the rabbit hole. I researched and called everyone I’d ever met with disabilities, people I read about in articles and dissertations. I never intended to do anything but solve a problem.

She asked if I had ever thought about clothing for people with disabilities. I was like, “That’s a thing?” She said, “It needs to be but it’s not.”

What is one problem with the current state of accessible fashion?

When you’re a person with a disability, you have access to retail stores because of ramps. But even today you can’t go into Macy’s or somewhere and see retail real estate dedicated to people with disabilities. And if someone with a disability buys the non-accessible clothing on the floor, a lot of them take an hour or three hours or twenty minutes to put it on, to just button pants or something. It’s a whole other world that people don’t even think about.

How did you devise the Disability Fashion Styling System?

I just asked questions; I was probably a bit annoying. If I saw anyone in a wheelchair or using crutches I’d go start a conversation about their clothes. One time I was sitting in Barnes & Noble reading a book and saw a guy in a wheelchair sitting with a female friend. He had on sweatpants. I was like, “Oh no.” Turns out he had recently injured himself and his occupational therapist had told him to wear sweatpants because they were the easiest thing to put on. Often when I introduce clients to my styling system they say, “What have I been doing?” I had one woman last night say this, a celebrity makeup artist named Chauntal Williams. She lost her hand in a car accident. Everything was something she could do with one hand.

Disabled model Lauren “Lolo” Spencer wearing another one of Stephanie Thomas’s signature looks.

Who are some brands you’ve worked with?

The ones I haven’t signed non-disclosure agreements for are Nike, Zappos Adaptive, and a lot of boutique brands like AG Apparel and IZ Adaptive.

How is the industry changing?

It’s changing because of social media. The fact that people with disabilities are empowered with tools to tell their own stories is incredible. It’s showing people that we date, we go to work, we like to swim–normalizing disability. Social media has changed the game. Right now the conversation’s starting to change and it really excites me. I saw on Good Morning America recently a woman presenting. She was like, “Oh my gosh, there’s now clothing that’s inclusive and adaptive!” Do you know how long I’ve been begging Good Morning America to have me on and talk about this?

The fact that people with disabilities are empowered with tools to tell their own stories is incredible. It’s showing people that we date, we go to work, we like to swim–normalizing disability.

It’s partly because the fashion industry is having its Napster moment. Bloggers have changed who the gatekeeper is and how people make decisions on dressing their own bodies. You’re seeing more people with disabilities in commercials, without explanation, at a cookout or out with their parents. Brands are saying, “Wow, people with disabilities are actually fashion customers! Who knew?” They would tell me behind the scenes, at meetings, “Oh, so the cripple wants to wear clothing? They don’t even leave the house.” These perceptions of disability are being challenged by social media.

What are some plans you have for the future?
I’m currently working on making a Cur8ble podcast. I’m going to introduce people to the industry, take them behind the curtain and show them all the amazing people that I know. Also, my first textbook will be out in early 2020. It’s called Fitting In: The Social Implications of Fashion and Dressing With Disabilities. I’ve curated relevant articles, including my own writing.

Disability

Designing The iPhone Case Of Prosthetic Leg Covers

The Confetti was designed not only to be accessible, but to answer the question: why shouldn't a prosthetic leg cover be cooler than a regular leg?

Prosthetic leg covers usually try to look like real legs. Flesh tone and shaped like a human leg, some even have a fake sock attached, or some other quotidian detail meant to imitate life. The result can be a bit uncanny. They rarely trick the eye on a second glance, and probably cause more staring, not less.

So the makers of the Confetti went the opposite direction. They designed a prosthetic leg cover that comes in bright colors–even glitter. It looks nothing like a leg, but why should it? If fake leg covers implicitly say that amputees should want a real leg, the Confetti’s message is: you can be proud that you don’t.

When the leading Brazilian prosthetics company, Ethnos, hired FURF Design Studio (Mauricio Noronha and Rodrigo Brenner, who were both 25 at the time) to design a new 3D-printed version of their product, they’d originally wanted to jump on the custom, 3D-printed bandwagon. Instead, with the help of the very young designers, they ended up innovating in the other direction and with the release of the Confetti in 2017, disrupting the entire industry.

If fake leg covers implicitly say that amputees should want a real leg, the Confetti’s message is: you can be proud that you don’t.

The Confetti was not the first cover to call off the leg look in favor of a unique design. But it is the first ever unique and affordable cover, and the first mass-produced cover. No two amputees are alike, which means that every cover needs a certain degree of customization, adding to expense. FURF solved for this by making the Confetti easy for amputees to customize themselves. About 70% of amputees can use it and the next iteration of the product which is underway will hopefully accommodate 90% of amputees. The mass produced product costs 1/10th of the price of a 3D-printed custom cover and less than half the price of standard covers. Made of injected polyurethane, it’s also lighter and more durable.

The Confetti is the only product to ever win all three of the most important product design awards: the Red Lion, the iF Design Award, and the Cannes Lion. Folks sat caught up with Mauricio and Rodrigo to talk about their design process and what they learned along the way.

Mauricio Noronha and Rodrigo Brenner of the FURF Design Studio.

What did you learn in the design process that lead to your decision to ditch the fake leg look?

Mauricio: During our research process, we wanted to get as close as possible to the reality of amputees. So we interviewed and spent time with as many as we could. Usually, when they lose their leg, they get a prosthetic that’s a metal tube, and a cover that looks like a leg. A lot of amputees said that the fact that covers try to look like a leg is just too weird. Even with amazingly realistic ones, they said that looking down and seeing a leg that is not actually your leg gave them a strange feeling. They said they didn’t recognize themselves in the mirror. So we went with the extreme opposite. We wanted to do a leg that would be even cooler than a regular leg.

We wanted to do a leg that would be even cooler than a regular leg.

Rodrigo: A century ago, glasses weren’t cool either. They were seen as a handicap. Now, even people that don’t need them want to wear glasses for style. We wanted the Confetti to be another accessory that people can use to express their identities. So depending on the person’s mood, they can customize it with different colors. An athlete representing Brazil in the Olympics wore his half green and half yellow. Another day we were with a girl who was wearing a pink confetti and when we went to a bar at night, she had changed to black and put some flowers in the holes. The holes are there to make it lighter but also more customizable.

The Confetti leg cover fits 70% of all prosthetics, and looks cool doing it.

What went into the decision to ditch the 3D-printed idea in favor of mass production?

Mauricio: When we design something, we like to think about what we are bringing into the world: not just the project itself, but how it’s going to make people feel. In the end, the feeling we wanted to give amputees was self-esteem. Self-esteem isn’t something that people should have to buy. Most of the people we interviewed and spent time with were in the favelas (Brazilian shanty towns – ed.) They were poor people. We learned in our research that the countries that have the most amputees are Brazil, India, and China. So we knew we wanted to make it affordable.

Rodrigo: The 3D printed covers came out a few years ago and yeah, they look really cool, but they’re really expensive! They cost around $4,000 Reals. That’s because it’s a tailor made process. If you had to get all of your clothes tailored, they’d probably look great on you but they’d be really expensive too. We realized that if we made the 3D-printed cover we’d been hired to make, most of the amputees we interviewed would never be able to buy it. That wouldn’t have been fair. So we wanted to make the medium sized T-shirt of prosthetic leg covers. We wanted it to be as one-size-fits-all as possible and also mass produced so it could be cheap.

We wanted to make the medium sized T-shirt of prosthetic leg covers.

To be able to do both, people were going to have to be able to customize it themselves. The way it works is that you cut the bottom tabs to make it the right length for your leg. It fits above- and below-the-knee amputations. You snap the front and back together with magnets. There are no screws so it’s totally waterproof. It was really complicated to create such a simple shape.

V2 of the Confetti aims to up compatibility to 90% of all leg amputees.

Besides all the awards from the design industry, what has the reception been like to the product? What’s going to happen with covers now?

Mauricio: People also told us that every day, even when they were feeling OK with their condition and good about themselves, somebody, maybe a kid, would point a finger, or stare, or ask what happened. Society’s lack of common sense would force them to relive their situation and bring them down. Many said they tried to hide their legs. But after they started using the Confetti, amputees told us that people still approached them but with a different vibe, more like, “wow, that’s a really cool leg!” They stopped hiding their legs by wearing pants all the time. One guy said he started wearing shorts again after 10 years. Other people said they started going back to the beach. That made us so happy. They are little things but they are important!

Rodrigo: Also, the foam, fake leg covers that were provided by the Brazilian public health system cost a thousand reals (around $265 USD – ed.) Since ours only costs 400, it’s now in the health system. People can choose which they want, and they get ours for free. That happened last year. Now we’re selling in fifteen other countries too.

Are you going to design more for products for people with disabilities?

Mauricio: This was our first health industry product. We used to design mostly furniture and some crazy things that don’t have names but now we’re designing more for the health industry.

All of the medical things that surround you just look…medical. They don’t look like they’re trying to make you feel better at all. That’s what we want to do.

Rodrigo: There’s a lot of opportunity because when someone is sick or has a disability, all of the medical things that surround you just look…medical. They don’t look like they’re trying to make you feel better at all. That’s what we want to do. We want to make it cool!

Mauricio: And we want to add a touch of poetry! The symbolism of the name is that confetti is light, colorful, and democratic; everyone uses it and they use it in moments of joy. We really don’t think the world needs another chair but it does cry out for more self esteem, more poetry, and more love. That’s what we hope to do with our products.

Disability Vision & Hearing Loss

The Treasure Hunters: Geocaching When You’re Disabled

Technology and a dose of true grit are helping these modern-day explorers take part in the global treasure hunt called geocaching.

Ed Manley gazed up the mountain. He could see the peak, where the treasure was stashed. And boy, did he want that treasure. But as a one-legged man with weight issues, with crutches and a body that complained whenever he moved, getting up that hill was going to be difficult.

A small container with a plastic-wrapped notebook doesn’t sound like much in the way of treasure. But for geocachers like Ed Manley, who live for the hunt, these caches–hidden under rocks, stashed in hollowed-out tree trunks or stuck to the metal base of a lamp post—are more valuable than pirate gold.

In geocaching, a small ‘cache’ of objects–containing a logbook and several small prizes wrapped in a waterproof container–is hidden somewhere in the real world. The GPS coordinates of the cache are then posted online for other geocachers to find, along with hints and clues on how to locate it when you’re in the area. Those who find the cache record their adventures in the logbook, swap out any of the items they want for prizes of similar value, and return the cache where they found it for other people to try to locate.

Because geocaches are often placed in remote or challenging places, it doesn’t sound like a hobby that would play well with disability or chronic illness. But the reality is different: for people like Ed Manley, geocaching can provide a literal lifeline.

A man with a beard in a powered wheelchair going geocaching with his daughter.

Ed Manley geocaching with his seven-year-old daughter.

From Suicide To Geocaching

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

In 2003, he fell down some stairs at work, breaking his neck. Manley already had health issues due to a car crash in 1979 that had hospitalized him for two years, but he accident spelled the end of his working life, and the beginning of a depression.

After years in hospital and 42 surgeries, his mobility was at an all-time low, and he’d developed an addiction to painkillers.

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

“I didn’t feel like I was of benefit to my family,” Manley remembers. ” I had become addicted and it nailed me to the couch, I couldn’t do nothing, I was useless.”

Based in Birmingham, Alabama, Manley decided to end his life on his boat.  “They’d find my boat floating, and that would be it.”

But as he was getting ready, the mailman dropped by. He had a package for Manley: a GPS device.

“I had ordered it using cigarette coupons and a few dollars, and I’d forgotten about it. I didn’t know a thing about a GPS.”

Interest piqued, Manley went into the house and sat down at his computer. One of the first hits  geocaching.com, where he discovered there was a geocache nearby. Curious, Manley followed the co-ordinates to a hole in the fence at his former old high school.

“I thought that’s pretty cool, and I decided not to kill myself.”

The Healing Power Of Hunting

The GPS device changed everything, Manley says. Although he was a long way from what he considered “healthy,” geocaching gave him something to do. Getting out of the house made him feel better.

A one-legged man on crutches wearing camo and hunting for geocaches in the woods.

Ed Manley going geocache hunting on his crutches back in the 2000s.

“It gave me some hope of recovery that I could have a life,” Manley explains.

Over the following year he hunted down increasingly difficult caches, building his emotional and physical health. Geocaching fed a strength Manley didn’t know he had. “I’d put my crutches down and crawl through mud on my butt.” He threw away the painkillers, and began to focus on a goal.

“I had one cache in mind,” Manley recalls. “It was on the top of the mountain. For a one-legged fat guy to get to the top of the mountain seemed like an impossibility. But I said if I can get up the top of that mountain and find that cache I will know I have recovered.”

It took him a year to build up the stamina to scale the mountain. “But I got up there and got that cache. I got up there and cried like a baby. I’d escaped the drugs, the depression, the feeling of uselessness.

“Geocaching saved my life.”

“Geocaching saved my life.”

Now 63, Manley is still geocaching. He mostly gets about in a powered wheelchair, which means mountains are off the cards.

“I don’t go after the hard ones as much anymore,” he says. “Over 10 years I proved I could get any cache. I have found caches in four countries and throughout 29 states. It’s been a blessing. It’s kept me sane.”

Manley still finds around two caches a day, gradually adding to the thousands of finds he’s racked up since that first find. And he has a new companion, his seven-year-old daughter, the child he has with the second wife he met through his hobby.

“My daughter loves it more than I do: she insists we go out, even in the snow.”

Geocaching When You’re Blind

For Day Al-Mohamed, geocaching is like hunting pirate’s treasure. “You have a secret map that takes you to a treasure. Especially some of the great big caches you find, like a big ammo box that someone has filled with things.”

A young, attractive Muslim-American woman with her guide dog.

Day Al-Mohamed’s visual impairment just makes her more determine to find elusive geocaches.

The public servant, who works as a senior advisor the US Department of Labor in Washington DC, began geocaching with friends. “They had just started and were super excited about it.” The excitement was contagious, and Al-Mohamed and her wife began hunting down caches on their own.

Visually impaired since birth, Al-Mohamed can make out shapes, and colors if she gets up close. But by pairing her iPhone’s voiceover function with the geocaching app, when she hunts down caches she’s able to take the lead with navigation.

With a mind that’s given to problem-solving, Al-Mohamed can tackle the most cryptic of clues. In fact, these often give her an edge.

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

While most cachers use the visual cues on the map, Al-Mohamed uses the compass in list mode, which guides her to the cache, inch by inch. “It’s kind of like getting hot or cold: Nine feet, eight, seven – okay we’re going well.”

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

Cache found, she lets her companion take over.

“When it comes to sticking hands into strange places I’m going to let somebody else do that.”

Although sometimes, there’s no avoiding the “ick” factor.

“There was one that someone had put on the side of a bike trail. It was a tree with a hollowed out base. My wife put her hand in and she let out a huge scream. And she said, ‘you stick your hand in there!’ I reached my hand in there and let out a scream, and pulled out a giant spider. Somebody had got a giant rubber spider, opened the abdomen in it and put a silver cylinder in there with the cache.”

Being visually impaired, she has to tread more carefully than others over the rough terrain geocachers often traverse. But working in the city has its upsides, and that’s the number of easy-picking caches right on her doorstep, which, due to her work schedule are often hunted at night, with a flashlight.

“In the city it’s more … how you get to it without someone else seeing you,” she says. “Secrecy becomes the more important thing almost than getting to it.”

Cheryl Rankine with members of the Australian Deaf Geocaching group.

The Universal Language of Geocaching

Cheryl Rankine has spent the last nine years geocaching her way around Australia, racking up almost 11,000 finds, or around three a day. Her hobby has sent her across four Australian states, and she regularly meets up with other deaf geocachers for events around the country.

Part of the 30-strong Australian group Deaf Geocaching, Rankine has ready-made friends in all corners of the country. But the language of geocaching is universal, she says, and when she comes across other geocachers she’ll pull out a pen and paper, or even mime to reach common ground.

Not one to shy away from a challenge, Rankine’s dedication to finding caches sees her scrambling through the Australian bush. Despite encountering snakes, and one instance where she was attacked by wasps, she’s determined to get to the most formidable caches, even if it involves climbing a tree.

“I always have a ladder in my car,” she says. “But I need more practice using ropes in trees.”

Rankine relies on visual clues and maps to navigate.

“Geocaching gives me an escape. I will never give up

“Walking in the bush, I keep my eyes open to watch everywhere. I can’t hear background [noise] but I manage to watch everywhere all the time. We even cache at night, with a good strong torch so we can see.”

However, with caching you never quite know what you’ll get, she says. Along with a ladder, she never leaves home without a walking stick, a magnet for accessing out-of-reach small metal boxes, pliers to open nuts, and a mirror. And even with all that prep, she still gets caught out.

“Sometimes, the clue could be song lyrics, and I’ll ask my daughter to listen to the song for me.”

She also contacts the cache owner if she needs a help, or calls the National Relay Service, an interpreting line for the deaf community.

The tenacious woman says she’ll geocache as long as possible.

“If I have many things on my plate at home, geocaching gives me an escape. I will never give up.”


Creative Commons Photo by Flickr user DM.

Disability

How To Travel The World By Wheelchair

After a car accident left him a triple amputee, John Morris is on a mission to make travel accessible to anyone.

When John Morris was 23, both of his legs had to be amputated below the knee after a life-altering car accident. His right hand was amputated as well, necessitating that he move around in a powered wheelchair.

For many, this would end all dreams of travel. But John Morris isn’t most people.

Just six weeks after the surgery in which his legs were amputated, the Florida State graduate journeyed across the country with his sister to see his school’s football team play in Pasadena, California’s Rose Bowl.

Since then, Morris, now 28, has traveled all over the world, from Moscow’s Red Square to the Burj al Khalifa in Dubai, to Beijing. Eventually, he decided to launch a website, called Wheelchair Travel, to inspire other disabled individuals to go see the world.

Folks sat down with Morris to learn more about his love for travel, and his belief that travel can be accessible to anyone.

You moved around a lot at a young age, which you say on your website sparked your interest in travel. Can you tell us what makes travel so rewarding for you?

I love travel for all of the typical reasons—new sights, sounds, tastes, and experiences —but also for the opportunity to test the boundaries of my abilities as a person with a disability. Travel presents challenges and conundrums, exposes me to new people, cultures, and languages, and demands my attention. No two days are the same, and I love having a life of travel that is filled with unique experiences.

I love travel for all of the typical reasons…but also for the opportunity to test the boundaries of my abilities as a person with a disability.

You had a life-changing car accident in 2012, but you haven’t let it stop you from traveling. What are some of the biggest roadblocks disabled travelers deal with?

There will always be people in our lives who focus on what we can’t do, things that our disabilities make difficult or impossible. But accessible travel is possible… even for this triple amputee who relies on a wheelchair to get around. Convincing ourselves that travel is possible is easier said than done, though. And, when we do take that leap of faith, we’ll encounter obstacles that test our spirits. Broken elevators, sidewalks without curb ramps, hotel rooms that don’t meet our needs, inconsiderate people and discrimination: we’ll encounter all of those things at some point. But there is always an alternate path. When a street is blocked, we don’t stop and give up, we circle back and search for another way. That’s what makes every trip so rewarding—opportunities to overcome, to work out solutions and to prove ourselves as capable.

What motivated you to start your website and to develop it into a resource for traveling while using a wheelchair?

Information unlocks possibility. When I took my first trips as a wheelchair user, information on the disability travel process and the accessibility of destinations was lacking. I created WheelchairTravel.org to empower people like me with information about travel, allowing them to unlock new opportunities and open the world to themselves.

John Morris of WheelchairTravel.org is on a mission to make travel accessible to everyone.

What has been the biggest surprise for you since launching the website?

The demand for accessible travel information has been overwhelming. When I first began living my life from the seat of a wheelchair, I saw only a couple others like me each week. But, amazingly, when I launched the website, readership quickly grew to exceed even my wildest expectations. The truth is, nearly one in every five people have a disability, and we have the same dreams and desires as our able-bodied peers. Among those are travel and the opportunity to see things like the Great Wall of China, the Eiffel Tower and the Statue of Liberty. I am honored to show them how to make those dreams a reality.

The truth is, nearly one in every five people have a disability, and we have the same dreams and desires as our able-bodied peers. Among those are travel…

What’s some advice you give to disabled people who want to start traveling?

Never be afraid to ask for help. Normally, the people we turn to in times of need are our closest friends and family members. But there is a much bigger safety net that protects us all: our humanity. You will always find someone willing to help – whether you are the homeless guy living on the street, the tourist who needs directions, or the wheelchair user who ran out his wheelchair’s battery in Beijing, China. Yes, that last one was me – and my safety net was there. A total stranger pushed me and my wheelchair all the way back to my hotel. So, if you need help, don’t shy – ask! When we work together, we all achieve more.

What’s something that non-disabled people don’t realize about traveling while using a wheelchair?

Few of my able-bodied friends understand accessibility, which can make planning outings or trips difficult. Hail an Uber? Not with a power wheelchair. Restaurants? They don’t all have accessible entrances. Theme parks? I’m charged the same for a ticket, but can only get on a ride or two. Stay at a friend’s apartment? Walk-in showers are not the same as a roll-in shower. The majority of people in our lives don’t understand the world was built for the able-bodied. As a result, people with disabilities must spend time planning their travels to account for any accessibility barriers that may exist. Travel—even local nights out—aren’t as straightforward for disabled people. Hopefully, as our community works to educate our friends and society at large, we will put a greater focus on the need for universal design and the creation of public spaces that are accessible to all.

The majority of people in our lives don’t understand the world was built for the able-bodied.

What are your future traveling plans? Future plans for the website?

The world is enormous, and I will never run out of places to go or people to meet. But I’m especially looking forward to visiting some places this year that I have already been to many times – Beijing, Boston, and London are all on my schedule, and I look forward to exploring new neighborhoods and meeting old friends. And, no matter where life takes me, I am committed to maintaining WheelchairTravel.org as a resource for my sisters and brothers in the disability community. Whether through injury, old age or an unexpected diagnosis, the community is growing every day. The world should be open to us all, and I’m happy to help in whatever way that I can.

Anything else you’d like to add?

One of the greatest gifts travel provides is the opportunity to enrich our perspective by meeting new people. But the opportunity to grow in understanding of the world doesn’t have to stop when our vacation ends. Say hello to strangers—at the grocery store, at the dog park or on the city bus – say hello and expand your horizon. Life may not be a constant vacation, but we should never stop traveling.

 

Disability

Not Your Average Stay-At-Home Dad

Born with one arm, my husband faced a lifetime of workplace prejudice, until he finally found the perfect job: raising our son.

One sultry night in Cuba, I met the man who would become my husband. But I must have had a couple of cocktails that first night talking to him, because it wasn’t until the next day that I realized he only had one arm.

Taking furtive glances at Justin’s arm, which ends just after the elbow joint, I felt awkward: had I missed the window where it would be okay to ask what happened? What was the etiquette here? But thankfully, he spared me any awkwardness by launching into it himself, explaining how it got chewed off during a fight with an alligator. Later, he admitted that he’d been lying: it was lopped off in a gruesome helicopter accident. And later that night, he retconned the accident yet again, explaining it had happened during a particularly vicious knife fight in a Havana nightclub.

Outside of his rugged Canadian good looks (he made me write that!), that silly sense of humor is what attracted me to Justin from the get-go, and has helped sustain us through our marriage. His ability to laugh despite the odds helped to smooth out the edges of early marriage when life kept throwing obstacles at us, the most notable and the hardest to traverse being his employment status.

It didn’t matter if he was fully qualified, or passed the proper training courses before applying; hiring managers would take just one look at his stub, and decide he couldn’t do a job.

Despite his competence, my husband has had difficulty finding work. It didn’t matter if he was fully qualified, or passed the proper training courses before applying; hiring managers would take just one look at his stub, and decide he couldn’t do a job. In one particularly horrible experience, a job offer made to him when he was wearing a thick jacket was retracted the next day when he came to sign paperwork wearing only short sleeves.

Justin swimming with our son.

Whenever we faced prejudice like this, we wondered if we could perhaps complain, report someone, get some justice. But there was never any explicit proof, leaving us feeling gaslighted, and doubting ourselves about whether Justin had done something wrong. Not only was it hard on our marriage, it was hard on my husband: being rejected over and over again damaged Justin’s self-esteem, and made it harder for him to see his self-worth… even though he’d been living with this sort of prejudice for some time.

Officially diagnosed with congenital amputation, an alligator didn’t really take my husband’s arm, but a quirk of nature, played out before even took his first breath. When he emerged as a one-month premature, 4 pound, 11 ounce baby, he also surprised everyone in the delivery room by only having one arm. As he grew, he tried a number of prosthetic arms designed with different purposes in mind, but Justin always preferred to figure out how to get by with the limbs he’d been given.

And that’s something he’s remarkably good at. After 11 years of marriage and over 14 years since that night on the beach in Cuba, I haven’t witnessed many things that my husband can’t do. He drives, he fishes, he swims, he kayaks…. and, with the addition of our son four years ago, I even discovered he could change dirty diapers.

But his abilities were not what recruiters saw at all. Instead of seeing him as more competent and resourceful because of all he could do with one arm, they deemed him unsuitable for his lack of limb. Consequently, he spent many years lurching from one temporary low paying job to the next.

Instead of seeing him as more competent and resourceful because of all he could do with one arm, they deemed him unsuitable for his lack of limb.

So after our son was born and my writing career blossomed we faced a choice. We could put our son in daycare while Justin tried to find yet another directionless gig, or we could make a change and set him up with a new employer who didn’t care how many arms he had: our son.

Making the choice to become a stay at home dad was relatively easy for Justin. Looking after children is difficult for any full-time parent, but for Justin, the benefits were better than any other job he’d ever had. For my husband, there couldn’t be a better job than spending all day with his son. Sure, he’s not exactly the typical stay-at-home parent: you can’t exactly see him making his own Play-Doh, or attending “Mommy and Me” classes. But if his life has proven anything, Justin could make this role work.

Now, when I’m working, I’ll sometimes be interrupted by excited screams echoing through the house, as the boys fend off an alien attack every bit as vividly imagined as the crocodile attacks and helicopter accidents Justin joked with me about our first weekend together. Or I’ll come down during a break from work, and see a house that looks like fifty kids ran wild through it. And I smile, knowing that my husband has finally found a job he loves.

Sometimes, when I’m working at a coffee shop, he’ll send me a quick text, joking he’s in survival mode. He’ll say: “Our son has a hard head like me, so we’re having a tough day, today.” But we feel lucky, because at least those tough days don’t include being underestimated just because of the body he lives in.

Our son, Justin’s client/boss, knows Daddy has one arm, but he doesn’t see it as a negative. He’ll stick a hand inside his shirt and say, ‘Look, I have one arm, just like Daddy.’ It’s clear from the way he looks at him that he thinks Justin is doing a great job, and so do I.

Disability

Swimming the World’s Most Dangerous Swims

After almost becoming disabled for life, Kim Chambers has pushed back, swimming everything from the English Channel to shark-infested waters.

In the sport of long-distance open water swimming, the stretch of Pacific Ocean to San Francisco from the Farallon islands is considered one of the hardest. Cold water, treacherous currents, and great white sharks, some 19 feet long. In fact, 40% of shark attacks in the U.S. occur in the so-called Red Triangle off the Northern California coast.

Swimming the English Channel is more famous, but far more people have done it (1,834 people, says Dover, England tourism, which tracks it). Only six people finished the 30-mile Farallon-SF swim. Kim Chambers was the first woman, and did it in 17 hours and 12 minutes.
What’s amazing: She didn’t swim until her early 30’s.

What’s astounding: She began swimming after doctors said she would never walk again after a severe leg injury, and suggested amputating her leg as a solution.

“If you’re not fearful, you’re not pushing your limits of what you can do,” says Chambers, 40, who believes mastering your fears, and stepping out of your comfort zone, helps you grow.

“If you’re not fearful, you’re not pushing your limits of what you can do.”

The San Francisco New Zealand-born resident is the subject of a documentary on her 2015 achievement, Kim Swims, that premiered in October at the Mill Valley Film Festival in the Bay Area.

“Kim’s story is a beautiful example of overcoming obstacles and finding oneself and a sense of joy on the other side,” said Kate Webber, director and producer of Kim Swims. “I chose to make a film because of her unique story. Her drive. And ultimately, her triumph.”

She’s one of just six people to complete Oceans Seven, a challenge of seven grueling long-distance swims created by the World Open Water Swimming Association, similar to the Seven Summits for mountaineers. Its director, Steve Munatones, calls her “a role model in her rehabilitation and monumental swimming achievements” and praises her for her goal-setting mentality and her spirit.

Chambers was only 30, a technology staffer, when she injured her leg after falling down a steep staircase. Doctors at California Pacific Medical Center diagnosed acute compartment syndrome, a dangerous condition which meant intense pressure built up in her leg that cut off blood supply to nerves and muscles. She had four surgeries over nine months. During two years of physical therapy, where she took off work, she decided to take up swimming to gain more dexterity.

An ex-ballerina who at age two started ballet lessons, she was used to discipline, feeling limber and precision. She just wasn’t used to swimming. A friend told her about the Dolphin Club, an open water swim club whose members swim in San Francisco Bay’s Aquatic Park, formed back in 1877.

She was hooked.

She took part in a relay swim from the Golden Gate Bridge to the Farallon islands for charity in 2010, where she traded one-hour shifts in a team of six people. Psyched, she repeated the swim as part of an all-women relay team. In Hawaii in 2012, she did a relay swim from Molokai to Oahu that took 19 hours, 27 minutes.

Photo: Faran Najafi

“I do it out of an overwhelming sense of gratitude,” she replied. “As a ballerina, I never appreciated what my body could do for me. Having come face-to-face with the very real possibility of being disabled for life, and working through that pain and despair with a lot of hard work, I have been given a gift. I want to see how far I can go.”

“Having come face-to-face with the very real possibility of being disabled for life… I want to see how far I can go.”

In her record-breaking 2015 swim, she wore only a bathing suit (no wetsuit, due to strict English Channel rules) and was well-oiled with lanolin (swimming in salt water is abrasive and can cause skin to bleed, something you don’t want in shark-infested waters). She dove into the water before midnight, when it was pitch-dark, from her crew boat off the Farallons. Touching that boat, which followed her throughout her swim, meant game-over. (A friend had to be rescued three miles from the finish line when a shark began circling him.) But to bolster her energy, crew tossed her a bottle of a carbohydrate drink on a rope every half-hour, and she’d sip while treading water for about 10 seconds, before swimming on.

To occupy her mind, she thought about her friends, family, and crew, replayed recent events that made her happy and kept an interior dialogue going to appreciate joyful moments, and keep her fears in check.

Chambers works for Adobe Systems, where she’s community engagement manager for its sustainability and social impact initiatives. She still does daily pre-dawn swims in the bay to keep in shape.

“We both swim out of the same open water swimming club in San Francisco, and share a deep, personal connection with the ocean as a source for healing and continual growth,” says Webber, the film director. “We all find our places. The ocean is ours.”

Disability

Superleg

Amputee soccer player, Powerade spokesmodel, and mountain climber, it's as a teacher that Nico Calabria thinks he can really make his mark.

It was the greatest goal of his life.

Sailing into the box from the left corner of the field, the box flew over the heads of a series of defenders. Nico Calabria, a high school senior at the time, readied himself. He had shaken off his defender, carving out some space in the crowded penalty area. Launching himself into the air, he acrobatically connected with the ball, sending a powerful shot off his left boot into the back of the net.

The goal, scored in the fall of 2012, was instrumental in giving Massachusetts’ Concord-Carlisle High School Varsity Soccer Team the win over a fierce rival. Calabria’s technique would not have looked out of place in the English Premier League, the best soccer league in the world. In fact, a clip of the goal would be loaded up to YouTube, where it would become an overnight sensation, eventually garnering over 1.8 million views.

It would be a special moment for any player. The thing is, Calabria scored the goal on crutches. He’s only got one leg: his left one. Born with a congenital limb deficiency, he’s missing his right leg and the right side of his hip, for reasons even his doctors don’t fully understand But only having one leg hasn’t stopped Calabria from competing in sports. He’s scaled Mount Kilimanjaro, starred in a PowerAde commercial, and competed in soccer internationally.

Calabria kicks. Photo: Carl Calabria

Calabria, 22, currently attends Colorado College where he’s an education major. This summer he captained the United States Amputee national soccer team (the team lost a tournament to Haiti’s national amputee team at the end of July). And thanks to his parents, Carl and Jeanine, he’s never let a silly thing like a leg get in his way.

“The mentality that they raised me with from day one was: we need to treat Nico as if he’s a regular kid,” Calabria says. “I think that mentality is very much just who I am. I’m driven, confident and willing to fail. My life would just suck if I didn’t have that mentality.”

“The mentality my parents raised me with from day one was: we need to treat Nico as if he’s a regular kid.My life would just suck if I didn’t have that mentality.”

Calabria played varsity high school soccer on crutches with able-bodied players. The crutches didn’t allow him to dribble much, but he shot and passed just like everyone else. Although he was always one of the slowest players on the field, he could move surprisingly quick on the crutches. He’s always been passionate about soccer. When he was just three years old, he would kick around the ball, hopping around on his prosthetic leg.

“It’s just a great game,” Calabria said. “It’s the beautiful game, the ultimate sport.”

He also loves soccer for the way it hammers through barriers. For many people, interacting with a person with a disability can be initially awkward. Calabria’s found athletic activities to be a way to blast away that awkwardness like a blow torch.

“When I played an away game and the other team saw me for the first time get off the bus, they’re just like ‘what’s going on?’ and, ‘let’s make sure no one hurts him,’” Calabria says. “But right when the whistle blows and I get the ball and they realize I have game, they realize we’re on an equal playing field.”

Calabria refuses to let his peers outdo him. Photo: Carl Calabria

Calabria lives a full life off the field, as well. He likes to DJ and takes jazz piano lessons. He also plays volleyball, dives, and has taught gymnastics.

The outdoors are one of his passions, and he tries to escape outside at any opportunity he gets. What he likes most is hiking and camping with friends in the Rocky Mountains.

“It (camping) gives you a chance to talk with friends about things that matter to you instead of going to a large house party where talk can be superficial. Being outdoors just feels a lot more authentic to me.”

“When the whistle blows and I get the ball and they realize I have game, they realize we’re on an equal playing field.”

He’s seen patterns emerge in social interactions. “Some people will just get it right in the open, saying ‘what happened to your leg?’” he said.  But he has friends he’s known for years who have never mentioned it.

He doesn’t like people treating him any different than an able-bodied person. “It’s pretty frustrating,” Calabria said. “People have a tendency to give me too much space. I understand it comes from a place of compassion, but I’m not asking for it.”

At Colorado College, he’s an education major. His immediate goal it to teach high school social studies. His long term goal is to work on educational policy.

“Education is a noble profession,” Calabria said. “It makes me proud to say ‘I’m going to be a teacher.’”

Nico on the field. Photo: Carl Calabria

The PowerAde commercial, which hit TV screens in April 2014, was part of an advertising campaign the sports drink company launched in the lead-up to the 2014 World Cup, featuring people who’ve overcome adversity to play soccer. The commercial shows snippets of home videos of Calabria from when he was learning to walk, to standing using a prosthetic leg, to running down the field using crutches (he jettisoned the prosthetic leg to help him move easier).

It also shows his grit. When a voice off camera asks him how he’s going to spend the day, a very young Calabria simply responds, “uh, play.” After he’s knocked over as he tussles for the ball in a soccer game, he pops right back up and keeps playing, never complaining to the referee or looking toward any parents standing on the sideline.

Although Calabria’s fast on crutches, he’s always been the slowest player when playing with two-legged people. His strengths are his passing skills and his awareness and vision on the field to distribute the ball.

“Education is a noble profession… It makes me proud to say ‘I’m going to be a teacher.’”

And that’s precisely what he does as a midfielder for the U.S. Amputee National Soccer Team. He joined the team three years ago and is now its captain.

Amputee soccer is played on a smaller field than soccer for able-bodied players. The teams field seven players, instead of the 11 that are fielded in able-bodied soccer. Goalkeepers must have only one functioning arm, and all other players must have only one functioning leg. There is no offsides rule, and using a crutch as a weapon leads to an automatic ejection.

The pace of amputee soccer is slower than a game with able-bodied players. But the games have more action. There are a lot more shots on goals. The players quickly advance the ball up the field, rather than try intricate short-passing movements. The play is also surprisingly physical. Players are not afraid to clatter into each other as they challenge for the ball.

When he’s not playing sports, Nico aims to inspire an entire new generation of kids as a teacher. Photo: Carl Calabria

“There are half as many legs on the field, so yeah, it goes slower,” Nico said.

The first Amputee World Cup was held in 1984. The tournament has been held every two years since 2010. England is the current champion. Russia, Angola, Poland, and Turkey also field strong sides.  Although the U.S. isn’t yet a favorite to win the tournament, the team has made rapid progress in the last few years. It advanced out of the opening stage for the first time in 2014 at the World Cup, held in Culiacan, Mexico.

“It was a big step,” Calabria said, “we started to be seen as a threat, where we were never contenders before.”

In most countries, the options for people with a missing limb are much more limited, Calabria explained, so a lot more people are funneled into amputee soccer. The plethora of sports options in the U.S. actually winds up putting the U.S. team at a disadvantage competitively.

Calabria wants to see the U.S. amputee soccer team grow and compete for the gold medal. One of his goals in the years to come it to set up a network of regional amputee soccer teams within the country. The teams would compete against each other. This, he thinks, would help foster amputee soccer in the U.S., and the competition would produce better players.

Perhaps most of all, he wants to develop a public speaking career on top of teaching. His message is that people need to live their lives to the fullest, despite whatever challenges they face.

“People often times blow challenges out of proportion and box themselves into a space where they think everything is against them,” he said. “Not to say that other people’s challenges aren’t significant or even harder than mine, but I hope people stop feeling like they’re the victim of life. You make yourself the victim.”

Acute Illness Disability

You Don’t Need Hands Or Feet To Be A Great Mom

Changing diapers, driving carpool... just a year after a near-death experience left her a quadruple amputee, Elizabeth Zweigel is already back doing what she loves most.

In her suburban Atlanta home, Elizabeth Zweigel sits down at the kitchen table. She watches as her four-year-old son Carson walks over, carefully carrying one of his favorite games: Hungry Hippos. He places it on the table, opens the box and sets it up, carefully locking each hippo into place and pouring all 20 marbles into the middle. They both begin to slam on the launchers, hoping that their hippo will win, having chomped more marbles and consuming the prized golden ball. When the game is over, Carson beams, and Elizabeth smiles back, thankful that she is able to share this moment with her son.

It’s a moment that many mothers might take for granted. But for quadruple amputee Elizabeth, who lacks hands and feet due to complications from septic shock, playing a game of Hungry Hippos with her son represents triumph on multiple fronts–even if he wins.

Elizabeth Zweigel and her son Carson (4) and daughter Mia (1)

Last year in March, at 33-years-old, Elizabeth fell ill with what she believed was the flu. A stay-at-home mom, she pushed through the day, taking care of her children as best she could. But by Sunday evening, her lips and legs were blue, she had trouble breathing, and couldn’t even walk down the stairs. Her husband Scott took her to the ER, where she assumed she’d receive some fluids and return home shortly.

Instead, by the next morning, Elizabeth’s doctors had placed her in a medically-induced coma. She was diagnosed with sepsis from a pneumococcal infection, which is what normally causes pneumonia as it enters the lungs. However, in Elizabeth’s case, the infection entered her blood, inflaming her body. The resulting septic shock led to multiple organ failure.  She was placed on 24-hour dialysis and a ventilator; at one point, after she was paddle-shocked back to life for the second time, her friends began planning her funeral.

“I awoke about three days later to find out that not only had my hands been amputated, but that my legs would also have to be amputated soon,” Elizabeth recalls. “I spent the next few weeks healing and trying to grasp what my near-perfect life would now be. How would I take care of my family? Was it really possible that I’d have to be taken care of?”

I awoke about three days later to find out that not only had my hands been amputated, but that my legs would also have to be amputated soon…. How would I take care of my family?

In late April, Elizabeth had bilateral amputations on her legs, approximately four inches below the knee, becoming a quadruple amputee. After almost two months in the hospital, she was transferred to a rehabilitation center for the next three months. Scott’s parents temporarily moved in to their house to help with the children. (In addition to Carson, Elizabeth also has a one-year old daughter, Mia.) While grateful for the support, it was also emotionally challenging.

Elizabeth recovering in the hospital.

“My in-laws brought the kids to the hospital many times, and they came to visit me almost everyday once I got to rehab,” Elizabeth remembers. “That was the best, but it was also very hard. They were the ones taking care of my kids full time. I knew I needed to focus on getting better, but it was hard to watch someone else take over.”

After the amputations, Elizabeth’s son, who was three at the time did not want to get too close to his mom. Seeing her lying in a hospital bed with no arms, a catheter and a feeding tube in her nose was overwhelming. Over time, as Elizabeth’s tubes were removed and she became more mobile, Carson became more comfortable with his mom’s new appearance. Mia was only four months old when Elizabeth was rushed to the hospital; she was too young to understand.

Motivated by her family, Elizabeth tried to get out of bed, using an electric wheelchair and beginning the long road of physical therapy. During this time, she met a small group of women in Atlanta who were fellow quadruple amputees. They took turns visiting her in rehab, sharing pictures, telling stories and answering questions. Most of these women are mothers, and several brought their children to meet Elizabeth.

“When I was in the hospital, I wondered how I was going manage. But then a quadruple amputee walks in with her kids and I realized I would make this work.”

“The main takeaway from meeting them was that I’m going to be okay,” she recalls. “When I was in the hospital, I wondered how I was going manage. But then a quadruple amputee walks in with her kids and I realized I would make this work. They also taught me that if something was important to me, I’d figure out a way to do it. One woman, a recent amputee, told me that she’d just learn to zip up her pants so she could wear jeans. Another had learned to kayak.”

Elizabeth takes her daughter Mia for a ride.

In early August, Elizabeth finally returned home, readyo get back to what she loved most – being a mother to her children. But it wasn’t easy. “The worst part about coming home was figuring out how to take care of my kids,Elizabeth explains. “I went into the hospital when Mia was only four months old, and during that time she bonded with the caretakers. She would go to them instead of me. I never wanted to change a diaper so bad! It’s not easy without hands, and she’s squirmy. It was so hard. I couldn’t even pick her up when she cried.”

Since then, Elizabeth has learned to change a diaper, but it’s a process. Step one is to hand Mia her iPhone so she doesn’t wiggle. Then she opens the clean diaper, using a combination of her arms and teeth to undo the straps. Next, Elizabeth lays Mia on top of the clean diaper and removes the dirty diaper, again using her arms and teeth; for hygienic purposes she will only change a wet diaper.  Taking out a wipe is the easiest part, but closing the diaper involves using her arms, chin and teeth. It’s not easy, but she will do it when necessary.

These accomplishments–insignificant for most parents–are big victories for Elizabeth. She relishes the little things.

For example, after several weeks of occupational therapy and adjustments to her car, Elizabeth hit a major milestone: she got back behind the wheel. Most moms aren’t psyched to do carpool, but Elizabeth had never been happier. “The first time I did carpool for Carson, I was the happiest mom to ever do carpool,” Elizabeth laughed. “Driving has been the biggest thing for my independence: a total game changer. While driving may not seem like a big deal to most people, to me it’s one-on-one time with Carson. When he’s in the car, he’s stuck with me. At home, he wants to play. Now I can take Carson to school, and we go to the grocery store together.”

“While the physical things are a challenge for me, I am able to do the emotional part of parenting.”

Last December, Elizabeth received her prosthetics. Explaining to Carson that his mom would soon be half-robot, her son thinks Elizabeth’s arms and legs are “cool”. But months later, these prosthetics are still a challenge, and she does not use them regularly. They are more difficult to maneuver, so her occupational therapist suggested she begin by learning do things she enjoys. Her first thought immediately went to her children: what can she do with her new arms and hands that will make day-to-day life easier and more fun for them?

“Necessity is the mother of invention,” says Elizabeth. “Sometimes I’m hesitant to try something new, but I know now that I can figure out most things. If I can’t, I will wait for help or do something else, and I try not to let it get to me. I do have a moment here or there where I think ‘this is so awful,’ and then I see my kids smile or laugh. I know that missing this would be way worse, and, it would be even worse for them. It would be terrible for them and my whole family if I wasn’t here. I’d rather be here without hands and feet than not be here at all.”

Although she wants to put her children first, it’s a balance. Elizabeth still receives regular therapy to gain strength and better use her prosthetics, and she has to spend time caring for her body. But she’s making parenting work as a quadruple amputee. “While the physical things are a challenge for me, I am able to do the emotional part of parenting,” Elizabeth says proudly. “I can still teach empathy, honesty and compassion. And maybe I can teach them better than others.”

Disability

Meet Mexico City’s Amputee Grammar Queen

After losing her leg to cancer, Paulina Chavira turned to her passion for grammar to make sense of the world.

Paulina Chavira, Mexico City’s grammar queen, is sitting in her office, having another fight on Twitter.

“People often get angry with me, saying things like ‘how can you correct me?’” she says. But Paulina feels driven. It’s just one of many interactions she’ll have online on a regular day. But not all are negative – Paulina gets comments and questions from educators, writers and the media, calling on her to advise them on issues of punctuation usage, accents, structure and more.

Being grammar queen is something of a new gig for Chavira. But she’s always had a passion for words.

Chavira checks Twitter.

In July 2013, when Paulina was 33 and had her first son began kindergarten, she read a tweet revealing that Mexico’s education ministry was going to accept public school textbooks into the country’s classrooms even though they were riddled with errors – 117 errors, to be exact. She took to Twitter to express her outrage, thinking, “How can this happen?” So she tweeted to her 400 followers.

The following day, major Mexican media outlets picked up on the issue, harshly criticizing the ministry for allowing a textbook with so many mistakes into public schools. But Paulina’s ire towards grammar mistakes isn’t just aimed one way. The day after, Paulina identified another issue, tweeting back to media sources: “Media outraged with 117 spelling errors in the textbooks of the SEP, but indifferent to those they commit daily.”

The sudden attention got Paulina thinking. In Mexico, as elsewhere, Twitter is a big way that people get their news and information. She asked herself how she could use Twitter to promote proper grammar, and came up with the idea of a Twitter database where Spanish speakers could check spelling and grammar. Armed with the @117errores handle, the result was NoMás117errores, or “No more 117 errors”, a direct reference to the 117 grammar errors found in the schoolbooks.

The grammar bug got Paulina in high school. That was also the year she was diagnosed with a cancerous tumor in her right knee. When Paulina started her chemotherapy in May 1997, she was having a hard time thinking of the future at all. Paulina thought it was bad enough that she might lose her hair, but soon, there was talk of amputating leg… talk that became a fearful reality after she woke up from her final leg surgery on September 29th, 1997 to just one foot and the indescribable experience of phantom limb pain.

“More painful than all of the surgeries was trying to stand again for the first time,” Paulina remembers. With the help of a few dedicated teachers, Paulina stayed on top of her schoolwork. Her parents, meanwhile, were an incredible support system. “You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Paulina Chavira in Japan while working for Marlo and his team.

“You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Over the next few years, Paulina ran the gamut of fears regarding her transition. “How will people look at me? Will I ever get married and have kids? Will I ever dance again?” Making matters worse was her prosthetic leg, a model unchanged since World War II.

When she went to college, she chose journalism as a major, and it was there that her love of writing and grammar became a passion. “Writing was a way I found to pour out all the pain and anger I had after my leg was amputated,” she remembers.

While studying at Tecnológico de Monterrey, Paulina’s antediluvian prosthetic was still causing her problems doing simple things like walking long distances and wearing her normal clothes.

Her father heard about a prosthetic engineer, Marlo Ortiz, over the radio. A man who was revolutionizing the anatomical socket, the interface where the residual limb goes into the prosthetic. The Marlo Anatomical Socket (MAS), was developed with the engineer mindset to provide more skeletal support and be aesthetically more human-like in the gluteal region. Paulina worked closely with his team, testing the new technology, and eventually getting her own advanced prosthetic.

“There was life before Marlo, and life after Marlo,” says Paulina. Not only did he supply her with an advanced prosthetic, but he taught her to use it for the first time. It renewed her confidence. “For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t,” she remembers.

This confidence encouraged her to study abroad in Spain, there she finally felt like she really accepted her metamorphosis. “Up until that point, I had never really faced that I had lost a leg.” But abroad, it was was impossible to skirt around the issue. Her new friends asked about it, and as they asked about her missing leg, Paulina stopped being ashamed.

“For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t.”

She returned from Spain with newfound independence, and she was asked to join Marlo and his team as a full-time Media Coordinator and Patient Model. Full of unique opportunities, she put her journalism career on hold and she traveled to the Czech Republic, South Africa, Japan and more: visiting the factories where they made the prosthetics, using her journalistic skills to do public relations and talk about her experience. While the experience was extraordinary, after more than a year she felt like she was living inside of her experience losing her leg, and felt like it was time to move forward and reconnect with journalism.

Paulina also found love, something she had previously feared when she first lost her leg.

Paulina and her husband Hector dancing at their wedding.

She married Hector, in November of 2006, and they “danced all night.” As for their two young boys, she tries to make the prosthetic leg as normal as possible. “I think the more normal we can be about it the better.” Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”.

Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”

Her influence on Twitter landed her an editorial position with The New York Times en Español and her career goals have grown. She now hopes to finish a Spanish style-guide for news.

Over the years, and despite the trauma experienced during her formative years, Paulina followed her love of language, starting with writing, finding the accessible opportunity of editing in journalism, and ultimately as a grammar force in her editorial position and on Twitter.

Her ultimate pet peeve on Twitter is “when people say ‘it’s not well written but you understand me.’ And I can’t understand why they don’t see the importance that it’s written correctly.” Paulina believes in the power of language and grammar. She says: “I love my language, I love to write it correctly. It’s a weapon. A peaceful weapon.”

Disability

Queen Of The Real-Life Furiosas

Angel Giuffria was the world's first bionic baby. Now she wants to be Hollywood's first bionic leading lady.

Angel Giuffria was the world’s first bionic baby. Now she wants to be Hollywood’s first bionic leading lady.

Amongst the colorful cosplay clans of this year’s Wizard World Comic Con, there was a new tribe, jostling steampunk elbows with the Stormtroopers, the Deadpools, the Jokers, and the Wolverines: The Furiosas.

Dozens in number, these post-apocalyptic Amazons boast tunics made of linen, shaved heads, blackened faces, steel prosthetic arms, and skull tattoos on the nape of their necks… details borrowed from the Imperator Furiosa, Charlize Theron’s breakout character in the 2015 blockbuster, Mad Max: Fury Road.

If you haven’t seen Fury Road (and what’s stopping you?) Imperator Furiosa is many things: an orphan, a former sex slave, and a warrior with a kick-ass bionic arm. But one thing she isn’t is a victim, which is what has made her inspiring to both women and men alike.

That’s why, in the year since her debut, Furiosa has become one of the most popular characters for fans to dress up as when they go to sci-fi conventions and Comic Cons.

But of all the Furiosas, there’s no one who does the Imperator better than Angel Giuffria. This twenty-something actress living in southeastern Louisiana is the Queen of Cosplay Furiosas. Because she has something that no other Furiosa has: a real-life bionic arm.

“You know what I really like about Furiosa?” Angel says to me by phone as she drives down the highway, gripping the wheel with her myoelectric (or muscle controlled) prosthetic. “In Fury Road, no one ever asks Furiosa what happened to her arm. No one asks if Furiosa’s okay, or if she needs help. She’s just herself. No one needs an explanation about why she only has one arm. Because the filmmakers had respect enough for their audience to just say, hey, this is just her.”

That’s an idea that resonates with Angel, a congenital amputee. She’s just her, whole unto herself. For her whole life, though, she’s been asked what happened to her arm. “When you’re a kid, it’s just so hard to explain why you’re different,” she says. None of her friends got it until 2003. That was the year Pixar’s Finding Nemo came out, whose title character has a congenitally underdeveloped right fin. Suddenly, Angel had a pop culture reference that made her condition understandable to her friends. It opened her eyes to the power of film to broaden perspective on what was (and “wasn’t”) normal.

There’s just as much Nemo as Furiosa in Angel. Like Nemo, Angel was born with one fin a little less formed than the other. Like Furiosa, she soon got a bionic arm to supplement it.

“When I was born, my mom had no idea I was only going to have one hand,” says Angel. “Ultrasound wasn’t as advanced then, so it was a big surprise to her.” But a few months before, Angel’s mother had happened to catch a television program. It was a news report on the debut of the first ever electric prosthetic hand for kids to be released in the United States. “Mom says she cried through the whole program,” Angel laughs. So when her daughter was born without a left forearm, Mrs. Giuffria was undeterred. “She kept screaming to the doctors in the maternity ward: I know where to get Angel a hand!”

Six weeks later, Angel had one. “Because of how proactive my Mom was, I was the youngest person in the world to be fit with a myoelectric prosthesis, and as far as I know, I still am,” Angel says.

Angel was the world’s first bionic baby.

Over the years, Angel’s prosthetic has only got more advanced. When she was a kid, it could only open and close. When Angel was 11, she got an upgrade to a hand which could pinch at varying pressures. Then, in 2007, the first multi-articulating bionic hands came out. These prosthetics allow for many grip patterns, like wiggling your fingers, or delicately holding a plate in a buffet line between your thumb and forefinger. Angel had to have one. The first models she tried were huge, like robot boxing gloves. By 2015, though,  Steeper, developer of the bebionic hand, was the first company to put out a small size hand that could fit those of smaller stature like females and young adults. It’s a super svelte multi-articulating hand Angel has worn ever since.

As a bebionic product representative, Angel tours the globe all the time, trying to raise awareness of prosthetics. She also has an entertaining Twitter feed, in which she talks about day-to-day life as a bionic woman, right down to what to do when people stare at you at the airport when you’re charging your bionic arm from a wall socket.

My hand can rotate 360 degrees on my wrist! How can I not be bionic enough?

Angel’s true passion is acting, though. That’s where she sees her ability to change the world’s perception of amputees. True, there’s not a lot of Furiosa roles out there, and even Furiosa wasn’t played by a real amputee. Still, Angel – who has worked with Jennifer Lawrence in the Hunger Games movies, as well as Ben Affleck and Jon Lithgow in the forthcoming movie, The Accountant – says that the roles she loves most are the ones that don’t have anything to do with her arm, or lack thereof.

That’s something that isn’t happening quite yet. As a bionic actress, Giuffria says she has been turned down for roles where she is told she “isn’t bionic enough” compared to CGI superimposed above another actress wearing a green screen glove. (“My hand can rotate 360 degrees on my wrist!” Angel laughs. “How can I not be bionic enough?”) She also finds herself getting turned down for amputee roles in horror movies because she’s “too cute” and the director wants to “scare people, not make them sad”… a type of professional rejection Angel rightly considers pretty insulting.

In Angel’s best roles, though, being an amputee isn’t a consideration at all.

Angel’s current prosthetic is provided by bebionic.

Angel remembers her first professional acting role, a bit extra part in 2011’s Green Lantern. Green Lantern wasn’t a great film, as Angel will be the first to admit. As the one girl in 100 personally chosen by director Martin Campbell as a featured background player – an extra with no one else in the scene with her, “not just a blob in the background” – it was still important to her. It gave her a glimpse of how Hollywood, and the rest of the world, should be.

In Green Lantern, Angel’s role was small. In a scene early in the film, she had to run down a college hallway, because her character was late for a class taught by “professor” Peter Sarsgaard. But after being cast, Angel started getting cold feet. She hadn’t mentioned her prosthetic; what if they hadn’t noticed it?

So with trepidation, Angel asked if she could speak to the director. Eventually, he came, at which point, Angel told Campbell that she only had one arm. “I told him it would be cool if he picked someone else,” she remembers. “An extra, even a featured background player, isn’t supposed to be the big question mark on the screen.”

But Martin didn’t react the way Angel expected when she told him about her prosthetic. “He looked at me, and asked: ‘Have you ever been late for class?’ Well, yeah. So he said, ”Then I don’t see any reason why you can’t do this.”

So she did. Because while sometimes she dresses up as Furiosa, the rest of the time, she’s just herself. She goes to school, she does Yoga, she avoids gluten, she has drinks with friends, and she tries to get acting roles that don’t have anything to do with her arm. Because Martin was right. Anyone can be late for class. Even Furiosas.