Woman sitting in wheelchair

The One Place I Felt I Could Be Myself as a Person With Physical Disabilities

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I recently traveled to the Mayo Clinic to see the world’s expert on stiff-person syndrome (SPS). During the days I spent there undergoing countless tests, I’ve never felt more comfortable in my own skin.

You see, because of then-suspected stiff-person syndrome and severe contractures in my feet, toes and ankles, I haven’t been able to truly walk for the last seven months. As a result, I use a wheelchair to get around.

Everywhere I go, I’m constantly stared at. I know it’s because I’m in a wheelchair and people are naturally curious. They think they’re being discreet when staring, but they really aren’t. I can’t say I blame them for staring. People who are different from ourselves are curious to us. We wonder about their background and their life’s story. Yet, we are always too afraid too ask.

However, there is one place in the world where I have felt like I “fit in.” It’s not a place you would expect, either. While I was in the cafeteria at the Mayo Clinic, it was the first time I realized I wasn’t being stared at because so many other people were in wheelchairs as well. Instead of staring, people go up to each other, introduce themselves and share each other’s stories. Some share stories about their health journeys and others share about their favorite baseball teams. It is heartwarming to see and to take part in.

An older woman asked me about me cochlear implants while eating lunch in the cafeteria. This led to a wonderful conversation about hearing loss. Because I had experience with partial hearing loss before I lost my hearing, I understood her frustrations when she would ask for a repetition of something she had missed and the person insisted “never mind.” Knowing how she felt, I repeated it for her.

As it turns out, she was at the Mayo Clinic for vertigo therapy because of Meniere’s disease. The Meniere’s disease caused her to lose her hearing. At one point, she was believed to be a candidate for a cochlear implant like I have. However, due to the disruption of the middle ear, it was determined the surgery would be too risky. This led to a wonderful question and answer session on cochlear implants and hearing loss in general.

Another elderly man was there for complications from diabetes. He had roots back to Pittsburgh, and we had a wonderful conversation about over favorite Stanley Cup-champion Pittsburgh Penguins.  

While I was waiting for some autonomic testing, I was coloring in a brand new Zen coloring book and talking about how stress relieving it was with another woman.

We were from all over the country — heck, all over the world. I’m not saying to be nosy and interrogate every differently abled person you see, but if you make eye contact with someone, don’t be afraid to strike up a conversation. You never know what you may learn or even teach someone. Not everyone is willing to have a conversation about their differences, but I’ve always been very open about my physical disabilities and my invisible illnesses. I can’t expect the world to know about them if I don’t take the initiative to educate others.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Designer Creates a Line of Jeans Specifically for Wheelchair Users

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Heidi McKenzie has always loved fashion.

As a child, she insisted on picking out her own outfits. As a teen, she designed her junior year prom dress with the help of her aunt. And as an adult, McKenzie is the mind behind an innovative new fashion line.

McKenzie studied fashion merchandising in the hopes of becoming a buyer for an apparel store. But after a 2007 car accident that left her a paraplegic at the age of 21, she discovered a new vision.

As she adjusted to using a wheelchair, McKenzie realized that wearing one fashion staple – jeans – had become impractical for her, and decided to do something about it.

“Being the stylish diva that I am, I realized very quickly that finding fashionable functional clothing was nearly impossible for me and my friends on wheels,” McKenzie told The Mighty. “So I set out to create a design so my friends and I could roll in style with our daily activities in mind.” In a photo provided by Heidi McKenzie, a group of wheelchair users model Alter Ur Ego jeans.

Three years later, Alter Ur Ego, McKenzie’s adaptive jeans line, was born. Currently, the outlet sells a men’s and women’s version of its flagship design, which features a high elastic waist, large pockets, pull tabs, a catheter opening and a “tummy control” panel.

Models wear the men's and women's Alter Ur Ego jeans.

This winter, Alter Ur Ego will expand its line to include jeans for kids, teens and plus sizes. Eventually, McKenzie hopes to create a fully adaptive wardrobe, including shirts, skirts, shorts, slacks, vests, dresses and shoes.

She’s hoping to unlock a key market in the fashion industry, one she says has lots of untapped potential – as 3.6 million Americans use wheelchairs, according to the 2010 U.S. Census report.

“[Adaptive clothing is] something that shouldn’t be hard to find,” McKenzie said, “and we need the opportunity to have clothing options just as much as anyone else.”

Alter Ur Ego will be featured in Nashville’s first fully inclusive fashion show, Fashion for Every Body, in September.

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Sisters Create 'The Disabled Life' Comics Highlighting Life With a Disability

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Illustrators and sisters Jessica and Lianna Oddi have a lot to say about living with a disability – but have decided to draw their thoughts instead.

Noting a lack of comics featured disabled people, the two created a blog on Tumblr – The Disabled Life – to showcase their talents as artists, as well as connect the disability community.

“It actually started as a Twitter account, where we’d make fun of things that had actually happened to us, or just make up some funny pop culture references,” Jessica Oddi, 24, said in an interview with The Mighty.

Both Jessica and Lianna live with an undiagnosed genetic condition and use wheelchairs. Their illustrations reflect their personal experiences navigating life as disabled 20-somethings.

[Image Description: drawing of a girl swinging across in a ceiling lift and sling, kicking out her arm and legs, singing “I CAME IN LIKE A WRECKING BALL!”]

Their wrecking ball illustration, for example, was inspired by how they feel when they use their lift.

Each illustration is done with exceptional care and provides a thorough written description for those who are visually impaired.

[Image Title: Me vs. Crop Tops. Image: A mannequin wearing a crop top, and next to it a girl in a wheelchair wearing the same crop top that is way too long and looks like a regular top, saying in frustration “ugh stupid scoliosis” ]

“[Image Title: Me vs. Crop Tops. Image: A mannequin wearing a crop top, and next to it a girl in a wheelchair wearing the same crop top that is way too long and looks like a regular top, saying in frustration ‘ugh stupid scoliosis’ ],” the description for their “Me vs Crop Tops” illustration reads.

[Image Title: Tanning. Left Image Description: A girl in a wheelchair is tilted back in her chair, with a bikini top and shorts, tanning. Right Image Description: That same girl is sitting on a counter, looking back disappointed as only the front half of her body is tanned.]

The sisters also post humorous captions, giving further insight into the inspiration behind their drawings. “Shout out to our peeps who also can’t get out of their chair to tan. Always half done, never fully cooked.”

[Image Title: Personal Space. Image Description: A drawing of a girl in a wheelchair and another person at a casino table. On her left, a woman holds on to her handle bar. On her right, a man is leaning on her arm rest, as the girl in the wheelchair looks terrified.]

So far the pair has created 15 illustrations, and each sister has her favorites. “I can’t pick between ‘What I Think My Butt Looks Like’ and ‘Personal Space,’” Lianna, 26, said. “Both are just true things we all think about, or have to deal with.”

[Left Side Image: Text saying “How I think my butt looks” with an illustration of a perfect round bum in a purple bikini. Right Side Image: Text saying “How it probably looks: with an illustration of a dimple flat bum in a purple bikini with a curved back]

Through their comics, the sisters have reached an audience far beyond their hometown of Ontario, Canada. “The best part is reading through all the messages, seeing that they could totally relate, or that they love our posts,” Jessica said. “We try to keep it to our own experiences, but it’s really cool to know there’s a community out there who just get it,” Lianna added.

As humorous as many of their illustrations are, they raise some important points about the ignorance people with disabilities face.

[Image Title: Online Dating. Image (Left): A girl in a wheelchair smirking while checking her phone with the message “You matched: Some Hot Guy”. Image (Right): Same girl in the wheelchair now with a disgusted look on her face while reading a message from Some Hot Guy who said “Hey u r pretty 4 some 1 in a chair though… lol Can u have sex babe?”]

“I wish people would just see us as human beings, like the rest of society,” Jessica told The Mighty. “Sure we have limitations or differences, but we’re all people. Just because my random mutation at birth changed some cells around, doesn’t make me less than any of you normies.”

“Personally I feel I’m stronger because of what I’ve dealt with,” Lianna noted. “I wouldn’t have it any other way!”

All illustrations are credited to Jessica and Lianna Oddi. To see the rest of the series, visit their blog The Disabled Life

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Filmmaker Designs Platform That Can Help People With Disabilities See How Accessible Places Are

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Jason DaSilva was working as a filmmaker, producing feature-length documentaries and short films, when he got his first iPhone in 2007.

Now, he is putting his skills towards a web development project designed to help people with limited mobility.

DaSilva, who has multiple sclerosis and uses a wheelchair, often had trouble getting into locations situated up a flight of stairs. He wondered why information on a location’s accessibility wasn’t readily available online.

“I saw the potential for this to change the world in a really big way,” DaSilva said. Thus, AXS Map was born.

AXS Map (pronounced “access map”) is a platform, available for the web as well as virtual reality systems Google Cardboard and Samsung Gear VR, that allows users to log accessibility details and virtually visit a space prior to physically arriving.

“Being able to see a place before you get there is huge!” DaSilva told The Mighty in an email. He said that his platform can also help users preview their route before leaving home, which is useful for everyone — not just for those with mobility impairments.

“With VR AXS Map, [users] can reenact this over and over, relieving them of any stress and getting them to practice until [the trip] is ready to become reality,” DaSilva said.

The VR iteration of AXS Map recently won the Audience Choice Award at a Demo Day sponsored by the Made in New York Media Center and the Independent Filmmaker Project.

DaSilva’s collaborator, developer Loren Abdulezer, told Filmmaker magazine after the Demo Day that the project’s organizers are seeking $250,000 — which would cover increased staffing and a software upgrade — for its next round of funding.

“We’ve got some very interesting technology and capabilities, and when you marry that to important ideas you can do extraordinary things,” Abdulezer told the magazine. “What was great about the [Demo Day] presentation is that everybody in the room ‘got it’ — they saw the significance and potential of what VR AXS Map can do.”

Since its launch in 2009, AXS Map has helped an estimated 20,000 users log reviews for 100,000 locations in 170 cities. DaSilva believes that’s just the beginning. He said feedback from users has been overwhelmingly positive, and hopes the platform will inform public policy and accessibility laws.

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A Maryland Teacher Had Toy Cars Repurposed as Mobility Devices for Her Students With Disabilities

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A Maryland teacher is giving her students a mobility device they will never forget – a car.

B.A. List is a teacher at Rock Creek School in Frederick, MD, which serves local students with severe disabilities. Her students, ages 3 and 4, are nonverbal and have an array of physical and cognitive disabilities.

List and her colleagues constantly adapt toys, instructional materials and communication devices for students. Then they heard about a University of Delaware-sponsored initiative called GoBabyGo!, which modifies battery-operated toy cars for kids with disabilities, and jumped at the chance to participate.

Student in yellow car
With the help of high school students at Frederick County Public Schools’ Career and Technology Center (CTC), the Mobility Project was born. The high school students rigged the toy cars to be operated using a switch instead of the gas pedal or, in some cases, a simple tilt of the head. Other students at the CTC equipped the cars with safety features – such as seat belts and padding – as well as personalized decals for each student.

Each student who receives a car is allowed to keep their car, with the caveat that it be returned to the school once they outgrow it.

Young girl in pink toy car

List said that the high schoolers benefitted just as much as the younger students.

“The high school kids who worked on the cars get to have a chance to interact with students with disabilities,” List said. “They learn that they are just kids and there is nothing to be afraid of!”

Young boy in white toy bus

And for many of List’s students, being able to move around independently was a first.

“It allows them to connect with typical peers socially and … to just be like all the other kids,” List told The Mighty.

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Pope Francis Says Perfect Body 'Obsession' Leads to Discrimination of Disabled People

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On Sunday, in a mass dedicated to disabled people and their caregivers, Pope Francis said society’s “obsession” with perfect bodies has led to the shunning and hiding away of people with disabilities, according to The Associated Press.

“It is thought that sick or disabled persons cannot be happy, since they cannot live the lifestyle held up by the culture of pleasure and entertainment,” Francis said. “In an age when care for one’s body has become an obsession and a big business, anything that is imperfect has to be hidden away, since it threatens the happiness and serenity of the privileged few and endangers the dominant model.”

He went on to say discriminating against people with disabilities is “one of the ugliest things we can do.”

Watch his full statement below:

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