“Butterfly Girls” Soar at NYC Disability Pride Parade and Beyond
Two young sisters with disabilities who are shelter residents wow parade goers and judges. 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 4th Annual 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 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 had developmental delays).
“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 M, 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.
However, the butterfly Cinderellas of the parade were located when Janel continued
to network and build community by reaching out to people through the hashtag
#disabilityprideparadenyc. One woman Janel reached out to through a happy
happenstance was one of the judges! Recognizing Janel’s groups photos on
Instagram, the judge sent an email to the parade committee gleefully sharing that
“the butterflies have been found!” The group received their award from Mayor Bill
DeBlasio and Commissioner Victor Calise at Gracie Mansion.
“We thought it was important that the girls have their moment. The spirit of the
Parade and Festival is all about inclusion, creative expression, optimism, and of
shining the light on the marginalized and often overlooked members of our
disability community in order to have a lot of fun, and fully celebrate contributions
and abilities,” said Elisabeth Axel, founder and CEO of Art Beyond Sight, who along
with the Mayor’s Office for People with Disabilities and 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
Disability Pride NYC 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 recognizes Highness, Makeda, Janel, and all the other members of To The
Core Foundation 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 demonstrate this year’s theme of ‘express yourself’ and exemplify the
power of art as both a channel for personal creativity, and way to build bridges across
our great city.”
“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 are literally
jumping up and down in excitement. They can’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!”
Nayda Rondon is a freelance writer who also works as communications and community engagement specialist for the New York City-based Art Beyond Sight. Art Beyond Sight, the leading voice and clearinghouse for best practices on accessibility and multi-sensory learning through the arts, inspires and provides resources across
the cultural sector for the full integration of people with disabilities.
Written By: Nayda Rondon
Photo Credit: Polygraffix Photography