Amy Faigin fell into advocacy at a young age, and into teaching by accident. “When I realized at a pretty early age that ableism existed, I was immediately angry about it,” says Faigin, who is autistic and highly gifted. “And I just have never been a person who could keep my mouth shut, so I just constantly yelled from the rooftops about it.”
About two years ago, Faigin, who’d never considered teaching, was invited to lead a 10-day mini-course at her high school alma mater, Bridges Academy in Studio City, a school dedicated to serving twice-exceptional students like Faigin. “It turns out, I really like working with kids,” she says. “They’re really fun and interesting and they really keep you on your toes.” She is one of many educators, role models, advocates and activists in the neurodiversity and disability communities helping pave the way for new generations.
Faigin now teaches a comics class and an ethics in the history of technology class at Bridges, and also works at the Ed Asner Family Center in Reseda, where she is developing a comic book course and an LGBT group.
In the classroom and beyond, Faigin shares her approach to being autistic, which is what she says she and many others on the autism spectrum prefer to be called. “We do not like to be called a person with autism, and the reason for that is that we typically say, ‘a person with something’ when that thing is bad or harmful or going to end their life,” she says. “We say, ‘a person with cancer’ or ‘a person with hemophilia.’ I actually rather enjoy being an autistic person. My life’s pretty cool. I like my brain.”
Faigin is working toward a master’s degree in cognitive diversity education through The Bridges Graduate School of Cognitive Diversity in Education. Her goal is to continue developing safe spaces for students and change school policies to create more of those spaces. “I want to teach for the rest of my life,” she says. “I love my students. I love the work I do.”
Her advice to aspiring self-advocates is to lead with love and compassion. “That should be your guiding force when you’re advocating, because it’s rough. You’re going to get told you don’t know what you’re talking about. You’re going to get told you’re hysterical, you’re going to get told that you’re fighting on the wrong side of causes. It’s a Sisyphean effort, but if we all push together, we can make progress.”
Faigin sees a movement growing that recognizes the cognitive and physical differences among people and the value of those differences. “We are not disabled, we are not flawed, we are not broken,” she says. “There are many different types of ways to be a person. You can prefer beef or chicken. You can be autistic or you can be dyslexic. There are 7.5 billion kinds of people because there are 7.5 billion people, and if we can just accept and tolerate and accommodate for those variances in the rainbow that is humanity, we can all get along a lot better and be a lot happier.”
Storyteller advocate
Micaela Ellis, who’s 13 and also autistic, advocates by sharing her story. The eighth grader, who attends The Lighthouse School of Ojai, has written a memoir, published in October 2018, called “Autism Over the Years,” which she is using to correct misinformation about autism.
Micaela was inspired by “Ugly,” a middle-grade memoir by Robert Hoge, an Australian man born with a tennis ball-sized tumor on his face and limb deformities that required his legs to be amputated. Micaela, who was in sixth grade when she read it, decided to write a memoir of her own.
“I just got a laptop and started writing and writing,” she says. When she had completed several chapters, her parents suggested that she turn her personal project into a school project (made easier because her mom, Gloria Jones Ellis, is founding director of The Lighthouse School). A year later, the book was finished.
Since then, Micaela has been promoting her memoir, visiting SoCal libraries, events and universities, and even doing an interview with Lance Orozco from public radio station KCLU in Thousand Oaks. This has given her a chance to practice public speaking and to share some perspective with graduate students in the education departments at UC Santa Barbara and Antioch University. “What I liked about talking to educators was that I could give them a perspective of what it’s like to be autistic and give them advice for what they should do,” Micaela says.
What are some messages she would like to get out?
That maybe autism doesn’t need a cure. “A lot of people in the autistic community don’t want a cure for autism,” Micaela says. “They just want to be accepted as they are. I don’t think autism needs a cure, I think only society’s thinking needs a cure.” That people with autism do want to be social. “Maybe there are some autistic people who prefer to be in solitude, but I think a lot of autistic people want friends and are just unsure of how to make friends,” she says. “Because making friends can be difficult, it is sometimes easier to be alone.”
That people with autism have feelings, too. “A stereo-type about autism that bothers me is the idea that autistic people don’t feel emotions,” says Micaela. “We feel emotions, but sometimes we don’t know how to express them.” That some people with autism prefer to be called “autistic.” Like Faigin, Micaela says that autism is a part of who she is. She compares it to the fact that she is also biracial. “I’m a biracial person, not a person with biracial-ness,” she says with a laugh. “It’s not something that can be separated from me.”
“Autism Through the Years” is available on Amazon and at www.micaelaellis.com. Micaela next plans to travel around the world with her family, learning about autism in different countries and cultures and sharing her memoir and her experiences. “I hope to increase understanding and acceptance of autism,” she says. “I also hope to show that autistic people have a lot of potential.”
Making a splash
While Micaela is a writer, Sasha Bogosian’s advocacy takes a more visual form. Sasha has also turned a challenge most 11-year-olds don’t face – motor difficulties caused by her cerebral palsy – into something that makes her truly stand out: The Sasha Project LA (www.thesashaprojectla.org).
Cerebral palsy, or CP, is the most common motor dis-ability of childhood, causing difficulty with movement and balance. In Sasha’s case, it affects her right hand and foot, and she has undergone treatment since birth at Children’s Hospital Los Angeles, including major leg surgery at age 9 to correct her body’s alignment. With Sasha in an ankle-to-hip cast for 60 days, her mom, Isabell, encouraged her to paint on Levi’s. “This was our way of finding activities that were bimanual, to get her to use her challenged side,” Isabell says. “Painting things, she forgets that her challenged side isn’t working as well.”
This began Sasha’s passion project. With help from her mom, Sasha began to sell the customized jeans and jackets she painted, and in 2016 founded the nonprofit The Sasha Project LA. Proceeds benefit the Mark Taper-Johnny Mercer Artists Program at Children’s Hospital Los Angeles, helping patients and their families express themselves through drama, dance, visual art and music.
“That program needs money to help the patients feel better,” Sasha says, with her mom adding that the Mercer program is solely funded by philanthropic efforts. “Without these donations, programs like this can’t survive,” Isabell says.
Sasha’s celebrity supporters include Kristen Bell, Jessica Biel, Rachel Zoe, Chris Pine, Luke Bryan and Lily Aldridge, and she and Isabell star together in the Children’s Miracle Network series “Real Moms,” a web series that features 10 moms across the country who bond through raising children with life-altering medical conditions. Last year, Sasha and her fashions were featured in Rock the Runway, a celebrity fashion show hosted by Paris Hilton to benefit the Children’s Miracle Network.
Through her Splatter Squad, Sasha is also giving other kids the chance to join in her efforts. “I am looking for kids to help me raise money for Children’s Hospital Los Angeles,” she says, adding that squad members can run lemonade stands, make art, host bake sales or find other creative ways to pitch in. “They can do whatever they want to raise money.”
Meanwhile, Sasha will keep creating. “It’s hard some-times, but CP kids are strong and love to work hard,” she says. She also has a message for kids out there facing challenges of their own: “Don’t give up. You’ve got this!”
A mentor on the court
Anthony Lara also followed his passion to advocacy – and he started at age 9. Lara was born with spina bifida and uses a wheelchair to get around, but that didn’t stop him from wanting to do the things he saw other kids doing. “In grade school, we all wanted to be part of something – Little League, football, all those things,” he says. “I just wanted to feel like one of my peers.”
His childhood took place in Chino in the 1980s, and there weren’t many adaptive sports options around, but Lara lucked out. The rehabilitation program at Casa Colina Hospital in Pomona was starting its first junior sports program.
“That was just a godsend,” he says. “I was on the court playing wheelchair basketball with other kids with disabilities just like myself.” This opened the door to a variety of sports, including wheelchair tennis. It was the beginning of a career that would last more than 25 years and continues to this day.
Lara recalls that tennis at first was daunting. “To a 10-year-old, that net seemed like it was 20 feet high,” he says. “And my biggest thing was that I wanted to get that ball over that net.” It took him a year. Lara went on to compete on the U.S. Paralympic Team in the Sydney Paralympic games in 2000 and the Beijing Paralympic games in 2008. He’s won a host of competitions and awards.
His second act came calling in 2011 when a friend asked him to be a counselor at a local junior camp, coaching wheelchair tennis. He began his new mission to introduce future generations to the sport he grew up with. “Tennis was a savior for me, something that not only kept me in line with my grades and my school, but it gave me a sense of purpose,” says Lara. “It’s just something that I want to share.”
Through his nonprofit, #1MorePush: Is It In You?, Lara partners with organizations throughout the state to share the sport of wheelchair tennis. He coaches locally with Angel City Sports, and coaches each year at Ability First wheelchair sports camp in Northern California, where campers spend a week and lessons go far beyond sports. “Forget about trying sports or hitting a tennis ball,” Lara says. “Some of these kids have never, ever been away from home. A lot of them don’t even see another disabled person other than once a year at camp.”
Wherever he’s coaching, Lara spends lots of time listening to and talking to his players and leading by example. “I’m no motivator, but I’m an initiator,” he says. “Seeing me and seeing the things that I’ve done; they see that there are opportunities. It’s up to that individual to go after them.”
He urges parents of kids with disabilities to give their children the chance to try, to learn that life won’t always be perfect, but that they can cope with their challenges. He sees tennis as a metaphor for life. “The world, like a tennis ball, comes at us at so many different angles – up high, low. You’re trying to figure out what to do,” he says. “Do you give it top spin? Do you give it slice? There is no exact answer, but we have a way to go through it and to figure it out as we progress. And that’s basically like a tennis match.”
She’s in the club
Paige Binsley was, in terms of being diagnosed with autism, a bit of a late bloomer. She went through elementary and high school with almost straight As, went to USC and was in marching band, and had no trouble making a few friends in school. But outside of school, with its structure of classes and clubs, she struggled. “I didn’t know how to make friends as an adult,” Binsley says.
After finishing college, struggling with depression and anxiety, Binsley was diagnosed with autism and began to find her way. In 2017, she learned through a therapist about the Work It Out! job skills program at the Center4Special-Needs (www.C4SN.org), where she found a compassionate learning environment and learned a lot about herself.
She worked her way from volunteer to office manager at the center and co-founded its Young Adult Social Club. “I wanted to start it for myself, because I didn’t have any friends and there wasn’t an existing group,” Binsley says. “It has been a great place for me to make friends and for other people like me who maybe aren’t comfortable or don’t know how to make friends easily out in the community.”
The club is for young adults 18 and older with develop-mental disabilities and is all peer-facilitated. Events include video game and movie nights, plus a monthly Creative Ex-pressions program in partnership with Art Trek in Newbury Park that includes painting, food art and improv games. Get-togethers tend to draw 10-15 people.
Young Adult Social Club orientation includes a Power Point that covers club information plus a primer on social skills and making friends. Afterward, a Kahoot game project-ed on the screen lets participants answer questions via their cell phones to reinforce what they’ve learned. The orientation and attending club events have paid off. “I’ve definitely seen growth in a number of individuals, where they’re more communicative and more confident,” Binsley says, adding that she has gained as well. “It feels really good that I’m able to help people. When I’m helping people through something I’ve been through, anxieties that I’ve had, it’s really good for me.”
Christina Elston is Editor of L.A. Parent.
