The Power of Connection

Two young sisters with disabilities who are shelter residents left their troubles behind to wow parade goers and judges. And recently their journey landed them at Gracie Mansion where they met NYC Mayor Bill De Blasio and received an award from the Mayor’s Office for People with Disabilities in celebration of their creativity and spirit.

Decked out in their colorful butterfly finery, Highness, 5, and Makeda, 4, Edgar flitted and frolicked along the parade route. Their beaming faces and youthful exuberance pollinated smiles among fellow marchers and parade onlookers who lined the streets down Broadway from Madison Square Park to Union Square Park.

"It was an amazing experience. We felt so welcomed and accepted. The girls were getting high fives and shout-outs and compliments on their costumes. And the girls were loving it all, high-fiving back, waving, spinning and twirling around, and sprinkling glitter as they made their way along the parade route," said Janel James, the girls' mom.

Janel is the founder of To The Core Foundation, a Brooklyn-based nonprofit that participates in community events in order to raise appreciation of African culture as well as engage with people with autism and special needs as a way to raise awareness and fight discrimination. She chanced upon information about the 4thAnnual NYC Disability Parade & Festival, which took place on Sunday, July 15, in lower Manhattan, at the last minute and quickly registered her group.

Little did she know, that much like the butterfly effect, her seemingly small action would set in motion an exciting ripple of positive consequences.

“It was our first time and, to be honest, we didn't really know a lot about the disability parade or whether we could pull things off on such short notice, but everyone pitched in to participate," said Janel, who explained that her impromptu group included other moms who worked on creating costumes; two adult drummers, who teach drumming classes to kids served by the foundation; and a volunteer photographer, who was on hand to record the merriment. The girls' homemade costumes were capped off with fancy butterfly wings donated by KAIOS International, a Brooklyn-based company that specializes in providing entertainment and costumes for carnivals, festivals and parades.

"I didn't know how the girls would react to the whole experience, but we had so many negative things going on in our lives that I felt we all needed this moment to celebrate our journey," said Janel, who is a single mom currently living in a shelter as she tries to build a better life for her two daughters, both of whom have special needs. (Highness is autistic and Makeda has developmental issues.)

"The girls loved it! It was a fun break from all the sadness and challenges we're experiencing; a chance to be creative, to express ourselves and feel a sense of belonging to a community of like-minded people. I wanted to celebrate my daughters' journey. To see them walking with such pride and happiness was amazing," Janel shared. "It gave us all a boost and a spirit of inspiration."

The experience also offered great networking and friend-raising opportunities, opening up a new world of resources, connections and support. Janel was overwhelmed by a feeling of being "embraced" by others in the disability community who were going through similar challenges and struggles.

Janel marveled at the disability parade's spirit of inclusiveness and acceptance where "strangers" extended their hands out in friendship and understanding. For instance, at one point Janel recalled having problems keeping Highness still long enough to take photos. A fellow marcher, a woman wearing an autism t-shirt, saw Janel's struggle and immediately came over and started interacting with Highness to keep her calm and entertained.

"The lady was so friendly and helpful and so representative of the kind of people who were at the parade," Janel said. "Everyone was so inspiring and intriguing; it made me curious to hear about other people's stories.”

Hoping to learn more in order to network and help her daughters and others like them, Janel went on social media. She began following #disabilitypridenyc and connecting to others in the community. One post led to another, and another, and another. Each one brought new information and new possibilities.

One opportunity that Janel didn’t even realize her group had already gained as a result of their participation in the parade was that — unbeknownst to them — they had won a parade contest for “Best Costume.” The judges, charmed by Highness, Makeda and their equally festively attired friends Gideon Michel, 6, and Hida Gregg, 6, were unanimous in choosing them. Only problem was that the kids had moved past the judges too quickly for them to take down the group’s information. Parade organizers tried to locate them after the parade, but they had already left so missed hearing the announcement at the awarding ceremony during the entertainment section of the parade.

However, determined that the “mystery butterfly girls” should have their recognition, the judges and parade organizers put out a social media call to identify and notify them. After a series of happy happenstances, the butterfly Cinderellas of the parade were located.

“We thought it was important that the girls have their moment. The spirit of the NYC Disability Pride Parade and Festival is all about inclusion, creative expression, optimism, and of shining the light on the marginalized and often overlooked members of society in order to fully celebrate their contributions and abilities,” said Elisabeth Axel, founder and CEO of Art Beyond Sight, who along with MOPD and the Disability Pride NYC, are the organizers of the Annual NYC Disability Pride Parade and Festival.

“These girls and their supportive mom perfectly embody all of these things. How could we not recognize them for the winners they are?” continued Elisabeth. “The parade was founded in 2014 by Mike LeDonne and inspired by his daughter, Mary, who was born with multiple disabilities. Mike and his wife, Margaret, were loving parents who wanted the best for their daughter, including respect and recognition for being the special person she is. The story of Janel, Highness and Makeda perfectly mirrors this parent-child bond of proudly championing for your loved one against all odds.”

“It was through my love for Mary that I decided I wanted the rest of the world to see what my wife and I see and know what we know: That Mary and others like her are just another diverse and beautiful aspect of humanity,” said Mike. “Being able to have a part in celebrating and applauding people like Janel, Highness and Makeda are among the most important and rewarding aspects of why we all work year-round as volunteers to put this parade and festival together.”

“This award to Highness, Makeda, Janel and all the other members of To The Core Foundation is being given in recognition and appreciation for embodying the spirit of disability pride through creative self-expression,” said Tom Finkelpearl, commissioner of the NYC Department of Cultural Affairs, who was one of the many city officials attending the parade in a show of support. “They embodied this year’s theme of ‘express yourself’ by exemplifying the power of art and culture to be a creative channel of expression and a bridge builder across all populations and areas of society of this great city of ours.”

“No matter how we express it — whether it be through music, performance art, dance, the written word or advocacy — our collective message is clear: we’re a part of society and we want to be sure we’re included,” noted Victor Calise, commissioner of the Mayor’s Office for People with Disabilities.

“I’m speechless,” said Janel when asked about her reaction to this latest unexpected development. “We’re so honored. It’s all so surprising and kind of unbelievable how they tracked us down. The girls and their friends Gideon and Hida were literally jumping up and down in excitement. They couldn’t wait to get their award!”

“I’m happy and excited,” said Makeda, while Highness summed it up by exclaiming, “It was great fun and I’m so happy we’re going to go back and see everybody again and have some more fun!”