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Disability

This Hockey Team For Disabled Kids Is The Coolest One Around

When Isaiah Granet was 12, he started a hockey team for kids with developmental disabilities. 6 years later, the San Diego Chill is still going strong.

Isaiah Granet has always loved hockey. The team environment, the competitiveness, the creativity of the game. He believes everyone should have the opportunity to play. Unfortunately, few hockey programs for children with disabilities exist.

That’s why six years ago, he started San Diego Chill, a nonprofit that teaches children with developmental disabilities how to skate and play ice hockey.

He did so after meeting Adam, a young hockey fan with Down Syndrome. Adam wanted to play, but couldn’t because no teams allowed children with developmental disabilities. “Seeing the pure love that Adam had for ice hockey, reminded me of the same passion I feel for the game,” Granet says. “Given that connection, I knew I couldn’t sit by and watch hockey stay out of reach for him.”

The most amazing thing? Granet did this when he was 12. He’s 18 now.

Folks spoke to Granet about his love for the game, how he started San Diego Chill, and how kids benefit.

Isaiah Granet with a member of the San Diego Chill.

How did San Diego Chill start?

I approached the local rink owner about starting a pilot program for a special needs hockey team. The owner offered us free ice time. Hockey equipment, however, is expensive. I contacted law firms to ask for donations. It was one of the most daunting tasks I faced. Being only 12, I thought I would be laughed at, and truthfully I was. Out of the dozens of emails and calls, one law firm took me seriously. Paul Hastings LLP not only helped me set up the team, they did it pro bono. Receiving help from such a large law firm was incredibly empowering and gave me the confidence to move forward. Without the generosity of Paul Hastings and the wonderful lawyers that we have worked with, namely Terry O’Brian, the Chill would not exist today.

How expensive is it to play hockey?

On average, it costs between $200 and $300 to equip each player. We don’t charge for equipment. Each player receives a brand new helmet to ensure absolute safety on the ice. While we do receive some equipment donations, we usually have to fundraise. No player will ever see a bill for their equipment; there are no barriers for anybody who wants to learn to play.

No player will ever see a bill for their equipment; there are no barriers for anybody who wants to learn to play.

How do you fundraise?

We’ve received several grants that have helped offset the costs of the program, and we mostly rely on the generosity of the community. People across San Diego and across the country, have stepped up to help support this program. That said, raising the funds each season is our biggest worry. We’ve raised more than $130,000 since starting The Chill. I’m also a recipient of the Baron Prize, which awards grants to students who make positive impacts in their communities.

Who plays and who coaches?

It’s open to children ages 7 to 13. Each Sunday during the school year, we have up to 40 players and 50 mentor coaches. Most of our volunteer coaches come once and become hooked. They fall in love with the team and bond with the players. Nearly all of our coaches are teenagers, aged 13-18. They willingly and enthusiastically give up part of their Sunday to help give back to their community. It’s truly amazing to see the connections and bonds that grow from player-coach relationships. It’s life changing on both ends.

As time goes on every coach gets to see the development of the player they have been working with for years, and the impact their commitment has made. We have also started an education program for the coaches, inviting doctors, parents, and specialists to come speak and educate the coaches on developmental disabilities.

How has San Diego Chill helped the players?

There are many stories from the players whose parents never thought they would walk let alone skate to the players who have met their best friends on the team. Another story happened after practice. The coaches usually go out for lunch together. One coach invited a player who was 13. We were 14 and 15 at the time.

Later that day, I received a call from his mom in tears telling me that her son had come home and told her that it was the “best day ever.” Just being able to enjoy lunch with kids close in age was enough to bring him and his mother to tears. It was an hour of our time that didn’t seem remarkable to us, but to this player it was enough for him to call it the “best day ever.”

Isaiah Granet and the players of San Diego Chill.

And about once or twice a year, we do an event night with the San Diego Gulls. We usually are able to offer free tickets or extremely discounted prices to families. These nights are about building a community through the team, encouraging the formation of relationships among parents and players outside of hockey. After one of these nights I had a parent come up to me and thank me for a wonderful night, saying that his family had loved being able to go to a pro sporting event. They, as a family, had never been able to attend any other sporting event before. To be able to go out and enjoy a night like a typical family meant the world to their entire family. There are so many things that we all take for granted, and seeing how impactful small events like these can be never fails to surprise me.

There are so many things that we all take for granted, and seeing how impactful small events like these can be never fails to surprise me.

What are your plans going forward?

I’m currently attending Washington University in St. Louis. While, I’m still very much involved with the team, I’ve expanded The Chill’s board, and delegated roles to other volunteers. We are currently working on a long term plan for The Chill to ensure its continued growth and existence.

And for the Chill to continue functioning we always need support from the community. There is no shortage of ways to contribute; hockey abilities are not a prerequisite!

Disability Mental Health Roundups

5 TV Shows That Get Disability Right

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

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

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

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

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

Breaking Bad

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

RJ Mitte as Walt Junior in Breaking Bad.

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

American Horror Story

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

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

You’re the Worst

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

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

Keeping Up With the Kardashians

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

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

Stranger Things

Gaten Matarazzo of the Netflix phenomenon Stranger Things.

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

What These Shows All Get Right

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

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

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

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

Disability Profiles

Why The World Needs More Disabled Superheroes

Becoming a superhero is every kid's dream... but when it comes to disability, it's a dream not reflected in most comics. That's something a new wave of comic creators is looking to change.

In the comic book multiverse, anything’s possible. Characters with X-ray vision, superhuman strength or invisibility occupy each page and no one bats an eyelid. However, despite their extraordinary qualities, our heroes are flawed: they make mistakes, they have very human problems, which tempers their invincibility and makes them relatable.

Unless, of course, you’re disabled. While mainstream characters have chinks in their armor, disabled characters are usually either missing completely, or lazy stereotypes: grotesquely deformed villains, or damaged characters with an axe to grind. There are exceptions, of course–Daredevil is a famously blind superhero, albeit one whose superpowers compensate for his disability to such an extent that he might as well be sighted, and the X-Men’s Professor X is a paraplegic–but by and large, disability has largely been forgotten by comic makers.

But this could be changing. With more awareness of disability representation in the mainstream media, perhaps the superhero multiverse is due a shake up.

A Superhero With Down Syndrome

David Walker’s well known in the comic universe, having written Luke Cage and Nighthawk for Marvel Comics and Shaft for Dynamite Entertainment. As an established author and as a black man who knows what it feels like to be an outsider, he feels a responsibility to bring representation to his work.

David Welker has written comics for Marvel, Dynamite, and more.

“As a kid growing up, I did not see an adequate amount of representation that made me feel like I had a place in these large, make-believe worlds. And I still remember what that feels like. And so now that I’m in a position to create comics, I feel the least I can do is work to make other people included.”

When publisher Lion Forge approached Walker to write for Superb, a new comic about a meteor giving people all over Earth superpowers, Walker was initially on the fence. However, when he heard one of the lead characters, Jonah, had Down Syndrome, he was sold.

“I thought, if someone was going to write a character with Down Syndrome, I wanted to see it done right. I figured if someone was going to mess it up, I would rather it was me messing it up trying to do it properly than somebody to not give the character the love and attention they deserved.”

I thought, if someone was going to write a character with Down Syndrome, I wanted to see it done right.

Having volunteered with children with different developmental abilities, Walker felt well placed to tackle someone who is often misrepresented, misunderstood, or not represented at all.

“I think that everybody deserves characters they can relate to, and those characters should be painted in pictures that are as human as humanly possible.”

Walker read up on Down Syndrome, and ran workshops with children and their families. Then he got down to work. He’s not afraid to admit that creating Jonah meant confronting his own prejudices and preconceptions of what Down Syndrome was.

The cover of the Superb trade paperback, showing Jonah, a superhero with Down Syndrome.

“To admit this is embarrassing and shameful, but there were times I was writing him and I would think, did I make him sound too smart? It’s a difficult thing to admit. I realized afterwards, wow, how prejudicial is that on my part? This assumption that just because a kid has Down Syndrome means he can’t use big words or say things that are really smart, or really funny. And I got mad at myself for thinking that way. That’s our societal condition. And I just had to acknowledge that and grow.”

One concern was giving Jonah the humanity he deserved, in an interesting and engaging story.

“Jonah spoke to me a lot even before I started writing him. I know that might sound odd, but as a writer, you want your character to talk to you and to express themselves in a way in your imagination that makes it easy to write.”

“I think that everybody deserves characters they can relate to, and those characters should be painted in pictures that are as human as humanly possible.”

He also wanted to subvert the idea that disability is a hindrance.

“I wanted to make sure the message was, just because he has superpowers, his powers don’t negate his condition. We all have our strengths and weaknesses, and the Down Syndrome doesn’t have to be a weakness, just part of who he is.

“Jonah’s greatest strength is that everyone underestimates him because of his Down Syndrome, which makes his Down Syndrome his greatest strength.”

Most importantly, Walker’s looking to do what he does best: to entertain, with plenty of action scenes and gripping plots. After all, that’s what his readers like, no matter who they are. “If a kid’s in a wheelchair or if they have autism or Down Syndrome, they’re still a kid, not some other, separate thing.”

The X-Men Of Disability

Across the Atlantic, in Hampshire, UK, Dan White’s been writing and drawing comics for years, producing the children’s comic Cindy and Biscuit as well as the more dark Terminus and Insomnia cartoons.

But it wasn’t until his daughter Emily, born with spina bifida, was three and Dan began to search television, books, and comics in search of characters in wheelchairs, that he realised how little was out there.

So he sat down at his desk, in his living room, and created The Department of Ability, a universe of characters, each with a disability. There’s Billy, a cat with carbon wheels, a radar and a transmitter. Jacob Claypole, who is blind with super-heightened senses and a weaponized cane, and of course, Emily, in her flying wheelchair.

There was nothing like The Department of Ability out there, Dan says. And as he drew, he realized that his project had potential outside his own living room.

“I didn’t know if the world was ready for a mainstream, fun, accessible story about Superheroes that showcases disability as normal, every day and brilliant, which disability is,” he says.

While authors have good intentions, White says many fall back onto tired stereotypes.

“A lot of authors … become unintentionally patronizing or they don’t flesh out their characters, investigate the reality of what this brilliant, diverse, talented community actually want..”

The Department of Ability is a superhero team of characters with disabilities.

 

All this community actually wants is to be seen, read or written about just like everybody else.”

Children know when they’re being talked down to, he says. “Sometimes authors go overboard in the sympathy or educational stakes, when all this community actually wants is to be seen, read or written about just like everybody else.”

“Treat children with equality of mind and they will astound you, children of all abilities have more imagination, glory, and knowledge than those who eternally dictate to them what they think they want to read and see. Engage and challenge your reader and they will adore you for it.”

As for Emily, she’s 12 now and proud of her dad and the characters he’s created. “She continues to plug the idea and its values to whomever she meets, a rare thing for an almost-teenager and gaming, music obsessive,” White says.

White’s 230-page graphic novel—which he describes as “totally original, loud, groundbreaking and unlike anything ever printed—is doing the rounds among publishers, and is getting nibbles in the UK, the US and Asia.

The publishing industry has been slow to come round to Dan’s idea, which is surprising given the attention he’s had from around the world from social media and mainstream news outlets.

It’s been a long time in the making, and he’d like to see it in print. Seeing themselves represented in print is no less than children like Emily deserve, he says.

Why Diversity In Comics Is So Important

New Jersey writer Erin Hawley—a critic who writes about comics and games on her popular website, GeekyGimp.com—has always loved Superman titles, and Betty and Veronica comics. But growing up with muscular dystrophy, there was never any question of seeing herself reflected in the pages she devoured so eagerly.

“I grew up without a strong notion of disability as an identity, so not seeing myself represented never occurred to me until adulthood.”

Erin Walker, a comics critic with muscular dystrophy, says more needs to be done to make comics more inclusive.

Now, she realizes how important it is for people from different groups to see themselves represented in the mainstream. Seeing yourself on the page; and a fair, empowering image of yourself, is vital for self-esteem. “It lets you know that you matter, that disability is part of who you are—and that’s OK.”

As well as wanting to see more disability representation in comic books and graphic novels, Hawley would love to see better-written characters, as existing characters are an “amalgamation of stereotypes and cliches.”

“Or disability is a catalyst for a character’s actions; their disability gives them a reason to be evil, to somehow get back at society or whatever. It always positions disability as a negative. This is especially true for villains or anti-heroes like Professor X.”

Other characters have their disabilities downplayed. “When we do get an awesome disabled character like Oracle (ed. – Barbara Gordon, previously Batgirl, who was paralyzed from the waist down up until a few years ago), their disability is stripped away.”

“I think I could have used someone like me in comics growing up—it would have made the transition to being proud of myself as a disabled woman much easier”

“When all you see in media is negative stereotypes, it lets you know that folks don’t consider you at all. And that’s an especially damaging message to send to kids and teenagers.”

“I think I could have used someone like me in comics growing up—it would have made the transition to being proud of myself as a disabled woman much easier.”

As White says, the time for change is nigh.

“Children and young adults tell me they are fed up with their media image and they love that my work gives them something of their own at last, which is so fun and accessible it can read by absolutely anyone.

“Representation isn’t hard, trust me.”

Neurological & Cognitive Disorders Profiles

An Extra Chromosome For Excellence

Carlos de Saro was born with Down Syndrome, but with the help of his mother's love, he has become an incredible role model.

Carlos de Saro doesn’t have a short list of accomplishments.

The 39-year-old, who has Down syndrome, received the Morelos state human rights award and Mexico’s Gaby Brimmer award for people with disabilities. He has given speeches in front of hundreds of people and made impressive appearances on Mexican television. And he is currently taking courses at a large public university.

But if his story sounds unique, for de Saro’s mom, it only goes to show what people with disabilities are capable of.

“There are so many people (with disabilities) who haven’t been able to get ahead, and who don’t believe in themselves and have parents who don’t believe in them either,” said Andrea Puebla. “They just think they can sweep and make a garden. But no, they can do more.”

About five years ago, Puebla and her son founded the non-profit Luchando Contra La Adversidad, or Fighting Against Adversity, which aims to help people with disabilities know their potential.

The organization, which is based in the central Mexican city of Cuernavaca, offers one-on-one classes every Tuesday through Friday and has helped about 50 students and their families with a variety of disabilities ranging from Down syndrome and blindness to autism and intellectual and motor deficiencies.

Carlos de Saro

Classes led by de Saro might focus on helping students learn their colors, draw within lines, or read, while talks given by his mother lean towards helping other parents understand their child’s needs.

Their initiative appears to have met a need: Classes have been so popular in their home state of Morelos, that the mother-son duo has turned away students.

“In Mexico we don’t have a book in children’s schools that says, ‘You have to help them, look at them normally, give them attention,'” says Puebla. “Some (parents) feel guilty because they say, ‘I let my son fall behind, I didn’t help him. I didn’t give him the attention I gave my other son and now I’m ready to help.'”

The classes aim to offer support and are free except for a 50 peso ($2.50) recommended donation.

In part, they are also a reflection of the duo’s own experience seeing that resources for people with disabilities can be scarce—and there isn’t always guidance in Mexico.

In fact, for most of her son’s life, Puebla says she wondered how to tell her son that he had a genetic disorder.

“If he understands it, how will he take it?” Puebla recalls thinking. “I didn’t know what he was going to think, what reaction he was going to have.”

So she waited to see what advice she would get and she focused on being a mom. She taught de Saro how to count and read and write. She made sure his homework was complete. And she showed him how to walk to his Montessori school alone, even while discreetly following behind him at a distance.

“I dedicated herself totally to him” so that “he would know what life is and what he could and couldn’t do,” she said.

A few years ago, the president of the Morelos state human rights commission met de Saro at an event for people with disabilities and was impressed by his good nature. The president invited him to work on various tasks such as archiving commission materials and accompanying staff as they did outreach for people with disabilities in poor, far-flung communities.

Carlos at work teaching a student.

And it was that work that gave de Saro and his mother an idea that they could do more to help.

The duo began giving lessons in a classroom at the commission, and de Saro eventually began receiving invitations to speak about his experience in Mexico, the U.S., Colombia and Panama, among other places.

His talks—which have emphasized that people with Down syndrome are human beings with “the same feelings, the same values and the same emotions” —can quickly bring a tear to his audiences’ eyes.

But at the heart of his message is a simple idea: As his own life shows, believing in someone with disabilities can go a long way.

“I’ve accomplished all of this with the support of my family, but more with the support of my mom,” he says.

For her part, Puebla continues to let her son walk ahead, but is still just a few steps behind.

When her son began giving conferences, for example, she recalls sitting at the front of the room and taking notes. Then, she would  say: “‘Look,my love, you repeated this, and these words weren’t used correctly. Or ‘remember that you should use a napkin to dry your mouth and sit up straight because your presence is important, or be careful what you eat so your suit fits you well.’

“In the beginning, I taught him all the motions, like how to check a bag, and so now he does it on his own. But I’m aware of what he’s doing and if there is something that he doesn’t do well, I tell him, ‘We’re going to do this and this,'” she says.

Just because you’re different doesn’t mean you can’t succeed.

“And like that— always playing, but saying things that are necessary: ‘Walk straight, order something reasonably priced when someone invites you to eat, say ‘thank you’ and ‘bon appetit,'” he learned.

After a 7.1-magnitude earthquake struck in Mexico last September, the organization’s classes were moved to their house, but in due time Puebla and her son hope to return to a classroom at the commission, where there is more space to host additional students.

Puebla also has other ideas in the works.

“I’m asking for an abandoned house to be donated so it can be used for people with disabilities, who are mistreated by their family,” she says. “No one pays me attention, but the day will come when someone is moved and will say, ‘You’re right, our children need attention.'”

As for her own son’s accomplishments, she says she is grateful.

“I gave thanks to God that he was born,” she said. “Now I give more thanks that he helped guide me so that he became what he is now.”

Disability Genetic & Congenital Diseases The Good Fight

A Catwalk For All

Inspired by her dapper, disabled grandfather, Mexican designer Annett Castro started Moda Incluyente, Mexico's first fashion show for people with disabilities.

Mexican designer Annett Castro worked for years in fashion, with stints at the country’s National Chamber of the Apparel Industry and creative agency Snoops, when a non-profit organization named Aequalis approached her with a simple question: Would she be interested in coordinating a runway show for people with disabilities?  She would.

“I told them I could help them and I fell in love with the project,” she said, noting her natural penchant to say yes to helping others.

In 2012, she organized a simple catwalk for dozens of non-traditional models in a local auditorium, attended by family and friends. But the event prompted a career pivot. She left her job at the creative consulting agency and started imag, Mexico’s first large-scale fashion show for people with disabilities.

“At the first show I knew this was what I was going to do,” she said.

Mexican designer Annett Castro, founder of Moda Incluyente.

To date, she has planned nearly 15 shows for models with motor, intellectual, visual, auditory, and growth disabilities at venues around the country, including Intermoda–the largest fashion expo in Mexico –and Museo Soumaya, a museum which hosts a part of Carlos Slim’s art collection. Her first international show will take place in Guatemala later this year.

“There was so much interest that we started doing it better and better,” she said, noting that the annual show at Intermoda has attracted crowds of some 400 people.

The catwalks, which include a cast of approximately 35 models with disabilities, are free of charge with the support of collaborators and are put on about three times each year. Over five years, approximately 100 emerging and established designers such as Maritza Peña, Carlos Herrera, and Isa Valdez have also featured their collections.

Some, such as Guatemalan designer Isabella Springmuhl, who has Down syndrome, are particularly familiar with the style needs of people with disabilities, while others design adapted apparel—such as textured or tailored wear for people with visual impairments or smaller body proportions— for the first time.

Necklaces with words etched in braille, leather gloves for wheel-chair users, and swimwear for women diagnosed with breast cancer have also all made their way down the runway.

“I feel like I’m contributing to the world.”

“Each case is different,” Castro said. “Designers meet with the models and hear about their situations before doing their work,” she said, noting that collections are almost always designed around an overarching theme, such as “flight” or “city street.”

All models sit for hair and make-up styling sessions, in addition to photo shoots, and also take home apparel after the show.

“I feel like I’m contributing to the world,” said Castro, who noted the personal motivation behind her work: Her grandfather, who she called Güello, used a wheelchair for eleven years. “He had a blocked shunt in his brain and started to use a cane and then a wheelchair when he began losing mobility,” she remembered. “We always said, ‘Oh, grandpa is old, that’s why he can’t walk.’ But now I understand it was a disability.”

Her grandfather died when she was 18, but continues to inspire the project. “He gave me a love for disabilities,” she said.

The shows have also helped her find a way to combine fashion and altruism. “We don’t see all the opportunities because we focus on glamour, but style is something that can be done in a kinder way.”

“The important thing is to be able to do something good within your profession.”

Castro, who was born in the northern Mexican state of Sonora, says she knew she wanted to pursue fashion from an early age. She studied at the Autonomous University of Guadalajara and eventually worked at the Apparel Industry Chamber and then a talent show sponsored by Elle and Snoops before her career took a turn following the Aequalis show. In the last few years, she has worked at Fundación Para Life, a foundation which helps businesses become more disability-friendly, and Arqcesibilidad, a company focused on increasing accessibility with products such as tactile paving. She still gives classes in fashion at Durango Santander University in Sonora, among other places.

“The important thing is to be able to do something good within your profession,” she said.

On a recent day, she was finalizing music choices and booking models for her next Moda Incluyente show, but she was not worried.

The end result is dependably gratifying, she said.

“I feel like I’m contributing to the world,” says Castro.

“There is a moment when you know the models are happy,” she said, recalling one of her favorite memories. “At one show, a blind couple was going to model. And the wife said to her husband, ‘Feel my beautiful dress.’ And her husband swept his hand over the dress and said, ‘Wow, you are beautiful.'”

Castro broke down and cried.

“We are looking for people who have never thought of being models,” she said. “We don’t want people to say ‘Aww, what a nice show.’ We want them to say, ‘That model was so incredible even if she had a disability.”

Her aspirations are also evolving. She would like to create a modeling agency to promote models with disabilities, and wants to further publicize the Moda Incluyente shows and expand her network of collaborators.

What would her grandfather say? “I think he’d be very proud,” she said.

Moda Incluyente’s most recent fashion show took place in Guadalajara, Mexico on July 19.

Genetic & Congenital Diseases The Good Fight

Being Miss Amazing

This pageant teaches young women with disabilities about performance, ambassadorship, and sisterhood. Not to mention looking great in a gown.

Beauty pageants conjure images of perpetually smiling, picture-perfect women in bikinis or formalwear, nary a wheelchair or surgical scar in sight. But Jordan Somer has given traditional pageants a makeover with her nonprofit organization Miss Amazing, which organizes pageants to empower and celebrate girls and women with disabilities, both visible and otherwise.

Since launching in 2007, the organization has expanded to 32 states, reaching 1,700 girls and women to date (any person with a disability who identifies as female is eligible). It will host its fifth national pageant this August.

As a kid, Somer volunteered in food pantries and nursing homes, but the celebratory environment of Special Olympics really made an impression on her. “I knew that this is a community that I wanted to be involved with a little bit more,” says Somer, who’s now 23 and a graduate of New York University.

Photo: Jordan Somer

While a high school freshman a decade ago back in Omaha, Nebraska, Somer planned and executed her first Miss Amazing pageant with 15 participants. “It was really humble,” she remembers. “We had a potluck dinner, and all of the volunteers were personal connections of mine. But the spirit of it remains in our program today.”

After Teen Nickelodeon featured Somer and Miss Amazing in a special segment and Pepsi-Cola provided a $25,000 grant, Somer scaled up Miss Amazing to other cities and filed for nonprofit status, which is received in 2011.

The Miss Amazing pageants now held across the country are all volunteer-run, annual events. “We’ve taken the aspects of pageantry like performance, ambassadorship and sisterhood, and made them open and available for girls and women with disabilities,” Somer explains.

We’ve taken  aspects of pageantry like performance, ambassadorship and sisterhood, and made them available for women with disabilities.

Participants get paired up with a buddy (who may or may not have a disability) who helps guide them through the pageant process. Local salons provide volunteer hair and makeup services to make participants feel extra special (but Somer is quick to point out that hair and makeup are optional).

During the day, participants complete a one-on-one interview with judges. The night of the pageant, they introduce themselves onstage to the audience. “They step in front of stage and have an experience to public speak and share with the audience how they define themselves,” Somer says. “The gown portion is extremely important for girls and women who don’t use words to communicate.” The optional talent portion is not judged, but many participants enjoy the chance to strut their stuff by singing, dancing, even presenting poetry or art or displaying sign language skills.

Photo: Jordan Somer

In our “every kid gets a trophy” culture, one might expect that every Miss Amazing participant goes home a winner. Not exactly. “We don’t believe they should be exempt from the experience of competition,” Somer says. “We crown every one of the participants as princesses to have that memento of what they’ve all accomplished onstage, but in each of the six age divisions, the points that the judges have given all of the participants are averaged to find the representative in each of those age divisions.” State-level winners continue to the national event, and Miss Amazing names one runner-up in each division just in case.

After her first pageant in 2015, Tiffani Johnson, age 23, was crowned 2015 Iowa Miss Amazing Jr Miss Queen and then 2015 National Miss Amazing Jr Miss Queen. Johnson, who has Down’s syndrome, says she was overwhelmed and proud when she won her national title. “I feel like I can do anything if I put my mind to it,” she adds.

The gown portion is extremely important for girls and women who don’t use words to communicate.

Johnson’s mother Christy says Miss Amazing has helped build her daughter’s confidence. “The whole thing is a bonding experience,” she says. “There are girls who are maybe lower functioning than she is, and she just gets this mother feeling that kicks in with her. It’s really amazing watching her with the group of girls.”

Johnson still FaceTimes with some of the friends she’s made through Miss Amazing. She’s also had several speaking engagements, including a fundraising gala for GiGi’s Playhouse where she helped sell a record number of raffle tickets. “Their strategy was no one would tell Tiffani no,” Christy adds.

Photo: Jordan Somer

Rhode Island seventeen-year-old Rachel Arruda was crowned the 2016 National Miss Amazing Teen. “I didn’t go to nationals expecting to win,” she says. “I just went to have fun and I love dressing up, so it was going to be fun and I’d meet new people.”

Arruda recently spoke at the Massachusetts state pageant about the challenges of invisible disabilities. “I have Asperger’s syndrome and you can’t always tell when somebody has a disability,” she says. “It’s important to represent that people can have struggles even if you can’t see them and that no disability is necessarily harder than one or the other.”

It’s important to represent that people can have struggles even if you can’t see them and that no disability is necessarily harder than one or the other.

Because Arruda’s Asperger’s isn’t as visible as other disabilities, teachers don’t always know to make accommodations and help her stay organized. Or others may not realize that when she says what’s she’s thinking, it’s because she admittedly doesn’t have a great filter, not because she’s being rude, Arruda adds.

“It’s really interesting to see how different people—people that have disabilities and people who don’t have disabilities—how we can all come together and have a great time and form great friendships,” Arruda says.

Photo: Jordan Somer

Beyond the outward benefit of new friendships, Somer says the pageant has also helped people reflect inward. “[It’s] suggested to many of the participants that you can accomplish greatness, you have huge potential,” she says. “A lot of the participants who’ve been involved in the program have gone out and started a community project and have gained a deeper understanding of what their self worth is.”

Genetic & Congenital Diseases The Good Fight

The Mom With A Mission To Help Families With Down Syndrome

Roughly one in every 700 babies born in the United States has Down Syndrome. This mom is determined to help those children reach their full potential.

In 2002, when Nancy Gianni gave birth to her youngest child GiGi, the medical team treated her like life as she knew it was over. “They put me in a private room and kept sending in the clergy,” Gianni says. “‘Is she dying; is there something more you’re not telling me?’ I asked. No one would look me in the eye anymore.”

GiGi was born with two holes in her heart and Down syndrome; both were a surprise. “It wasn’t until I took her home that I really got to understand her and see that she was so much more than this diagnosis,” Gianni says. “When you have a typical kid, they don’t tell you how they might have a learning disability or they might get cancer, but when you have a kid with Down [syndrome], you only hear the negative.”

Gianni, who lives in Barrington, Illinois, left a job in ad sales when her oldest son was born. After GiGi’s birth, Gianni concocted an idea to challenge people’s perceptions of Down syndrome and give families a place to see their child’s full potential.

Nancy Gianni and her daughter, GiGi.

Gianni envisioned a place where children with Down syndrome could get educational and therapeutic programs tailored to their needs. A place where families with Down syndrome children would feel welcomed. Skeptics suggested she focus on her own child, but Gianni persisted. “I could have put all my energy into her but that’s not going change the world’s perception,” she says. “We needed to change perception for all individuals with Down syndrome.”

In fact, Gianni says the idea had been gestating from the moment GiGi was conceived. Although she did not know her child would have Down syndrome, Gianni found herself taking an early stand during pregnancy when other people used the R-word. “I remember being so excited and feeling like he or she was already making me a better person, making me stand up for people,” she says.

She opened the first location of GiGi’s Playhouse Down Syndrome Achievement Centers in Hoffman Estates, Illinois in 2003 with an all-volunteer staff. Setting up shop wasn’t easy but fortunately Gianni found others who believed in her mission.

Initially, explaining her plan for a center for people with Down syndrome seemed to set off alarm bells for landlords and others. Gianni called her insurance agent and he was out of town, so she spoke to someone else. “I want to open this place for people with special needs and have different programs for them,” she told him. Two seconds later, he said, “I’ve got a 16-year old with Down syndrome; will there be something there for him?” He made sure she got the insurance she needed. 

GiGi’s Playhouse offers families around the country a Down syndrome friendly place for activity and support.

Each year, GiGi’s Playhouse offers 50,000 sessions of completely free programs for people of all ages, whether they have a diagnosis or not. For instance, Language, Music N’ Our Peeps (LMNOP) classes use music and dance to teach infants and families basic sign language.

Melissa Ciraulo, a mother of three living in the suburbs of Chicago, took her three-year-old son Peter to this class. “Since attending LMNOP, he’s using more words, learned to sign more and trying to verbalize,” she says. “Whether it makes to someone else, it makes sense to us. He’s started him to understand what is going to be expected of him in preschool.” She’s also taken her three kids to open play and attended some of the seminars for parents.

School-age kids and teens can participate in cooking, club, karate, drama troupe or literacy training, while young adults in GiGi University complete an eight-week program learning confidence, career skills and wellness. They then go on to intern at GiGi’s Playhouse Store, Hugs + Mugs.  

For GiGi Gianni, “the literacy and speech programs are my favorite, but I love the GiGi Fit workouts and hanging out with my friends.” Fitness programs are especially important for people with Down syndrome since they’re often born with low muscle tone (hypotonia). Because of that, GiGi makes sure to stay in shape by taking dance classes, as well as being a member of her school’s cheerleader squad. 

Nancy Gianni says being an ambassador for GiGi’s Playhouse has given her daughter tremendous self-assurance. On a recent trip to a Playhouse opening in Raleigh, North Carolina, Gianni noticed that GiGi “walks through the airport with such confidence. She just gave a speech [that she’d written] in front of a thousand people.”

GiGi Chianni aims to be a leader and role model, not just to kids with Down syndrome, but to everyone.

GiGi Gianni says of her ambassador role: “I want to be a leader and help people and to inspire people to be better.”

Ciraulo believes GiGi’s Playhouse has had a positive impact on her entire family. “To be able to go somewhere and be surrounded with people who’ve gone through the same things as well as a lot of the same joys, it’s heart-warming and a sense of relief,” she says.

GiGi’s Playhouse now has 31 locations across the United States and Mexico, with hundreds more communities asking for their own Playhouse. Gianni hopes to have one in every major metro market by 2021 and plans to offer some online programming for families outside those areas.

“As soon as we opened that [first] one, we had all these inquiries,” Gianni says. To help GiGi’s scale, Gianni added paid employees and had an operating agreement and licensing agreement created for new locations, which operate as their own individual LLC under the same nonprofit. “They’re responsible for their own fundraising, but we give them all the tools that they need,” Gianni says.

GiGi’s Playhouses are entirely donor-supported. “We don’t use any government or state funding,” Gianni explains. “It’s not dependable. It would be devastating to have to pull programs. You can’t take this away from a family once they have it.”

Gianni says this donor-based model has helped make GiGi’s Playhouse sustainable. “I think we can equate our longevity to that from the beginning,” she says. “I’ve always had to be scrappy.”

Unlike the grave predictions of the medical team that delivered GiGi, Gianni and her daughter have thrived in their roles as chief belief officer and ambassador, respectively. “If you look at my life, it looks pretty good,” Gianni says.