Invisible Disabilities and Community Acceptance

Two Birmingham doctors founded one of the fastest growing nonprofits in the country, KultureCity.

A family matter prompted Birmingham physicians Michele Kong and Julian Maha to create KultureCity. The family at home, from left: Michele Kong, Abram and Juda, Julian Maha. Photo by Art Meripol

When two Birmingham doctors faced a personal crisis, their response caused a paradigm shift in an issue that had gone too long unaddressed. UAB emergency room physician Julian Maha and Children’s Hospital pediatric critical care physician Michele Kong are the married team behind KultureCity, a nonprofit working with communities to better accommodate people with autism, PTSD, Alzheimer’s and other “invisible disabilities.” It is one of the fastest growing nonprofit organizations in the U.S. and has extended its reach internationally since its inception in 2013.

“That was the genesis of KultureCity,” Maha explains. “We want to create a true culture of acceptance and inclusion for these individuals and help people understand them and that they have a valuable role to play in our community.”

The organization is represented in four countries and 400 venues. Volunteer-driven, KultureCity is run in the leanest way, keeping costs down, with only one employee currently on the books.

The couple’s realization of invisible disabilities came in a painful way. Their first child, Abram, was responsive and thriving until, at 2 years old, the toddler suddenly stopped speaking and became less responsive. After a lengthy search for answers, Maha and Kong found an expert who diagnosed their child, then 4, with autism. The couple was told to change their expectations of life and their son’s potential.

It was a bitter pill. In their grief over the diagnosis, they sought answers and talked to other families facing similar issues, noting the isolation they experienced. They made adjustments for Abram, working around his sensory issues, even in matters as simple as a haircut.

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“When Abram was approximately 4 years of age, we were noticing he had a lot of sensitivity to particular senses — touch, bright lights, being in a new environment — getting his hair cut was difficult,” Kong says. “We picked a time to go to the barbershop when nobody would be there. The parking lot was empty. Abram was doing well, all things considered.”

At that point a customer emerged from the back of the salon, harshly demanding Abram be quiet.

“She was reprimanding him for being a naughty child and me for being a terrible parent who could not control him,” Kong says. “Having somebody come at you so unexpectedly really threw us off. Abram was very upset. It became a seminal event in our lives and triggered the movement. We realized our community was not inclusive of children like Abram.”

Kong says the lack of understanding about a particular behavior, or individuals making wrong assumptions about what they observe, keeps many families at home, despite the fact one in five people has invisible disabilities.

“The world can be overwhelming for a child like Abram, and for families to take the leap to go out is hard to begin with,” Kong says. “Then having judgment placed on them creates an even bigger barrier to families being included in the community.”

Kong and Maha, shocked by the encounter, began working the problem and concluded the first step was realizing it wasn’t enough to change one person.

“There needed to be a culture shift in our community and society,” Kong says. “To move the needle for inclusion, we would really have to see a mindset change. In the end, that became the driving force behind KultureCity and the movement.”

Dr. Bill Foster, then head of the Birmingham Zoo, reached out to Kulture-City shortly after it was formed four years ago. The zoo had received requests from parents restricted by sensory concerns. Working with Maha and Kong, Foster spearheaded the first sensory “Boo at the Zoo,” with approximately 800 people attending. The success was unquestionable, and zoo staff and volunteers were trained on acceptance and inclusion, an impact beyond a holiday event.

“Dr. Foster realized there was a great need in the community,” Maha says. “You can enhance the guest experience and augment the bottom line by making every day inclusive.”

With the zoo’s partnership with KultureCity, children who have Sensory Processing Disorders now have access to many resources, including noise canceling headphones, fidget toys and weighted lap pads. The zoo now has signage identifying “quiet zones” and “headphone zones” to help visitors explore.

KultureCity is being embraced worldwide as more people learn its mission, which includes teaching venue employees to be sensory aware and providing the tools needed to allow autistic children access to places others take for granted. The nonprofit has received accolades for its work, including: Fast Company’s no. 4 among the 2019 list of world’s most innovative companies, Microsoft Top 10 USA nonprofit, Toms of Maine 50 States of Good Winner, GreatNonProfits NonProfit of The Year and HSN NonProfit of the Month.

“Autism awareness is not enough,” Maha says. “We need acceptance. Acceptance is a proactive look at solutions rather than problems. The bar is set so low for autistic individuals. We have to give them a chance and to create understanding and job opportunities. Autism is isolating, but it does not have to be. With KultureCity, we want to empower families and reunite communities through sensory inclusion.”

Soon after the zoo project, Maha spoke at a conference where he met the general manager of the Cleveland Cavaliers, who signed on to the project. The NBA has followed suit, with multiple teams joining the program.

“By becoming sensory inclusive, the Cavaliers galvanized their community,” Maha says. “They needed to understand and teach, and they needed the community to embrace and accept. From there, the NBA found out about us and wanted to partner in an official capacity to push this out to all NBA teams.”

Maha and Kong are now self-taught experts in the arena of inclusion. Despite their dedication to KultureCity, both co-founders maintain their full-time jobs as doctors, having vowed from the beginning never to take money from the cause.

“We provide the knowledge and give the necessary tools to individuals and institutions,” Kong says. “KultureCity is unique in that we are blessed to be surrounded by volunteers who, at their core, believe in the movement and have the passion to move the needle of inclusion. We have coined it as ‘impact equity.’ It motivates us all.

“Once we were able to show people the need, they believed in it,” Kong says. “We are fortunate to have real stakeholders who really push the mission together.”

Kong says the emphasis of inclusion is not limited to sports stadiums, museums, schools and parks. The battle continues to be sure inclusion is implemented across all aspects of life.

“It’s impact-driven,” she explains. “When families reach out to the institution themselves, it makes a difference. In Australia, a dad wrote a letter to a football (soccer) team and said from the day his son was born, he wanted to take him to a game, but had not been able to because of sensory needs. Leadership formed a search committee on what could be done to make the stadium inclusive. They found us and what we were doing with NBA arenas.”

The Geelong Cats’ stadium is now a partner with KultureCity, advertising their inclusive nature and sharing the impact on a new continent.

“It’s rather amazing to see us being an international nonprofit,” says Kong. “We are able to do that with overhead of less than 5 percent, which is low and a testament to the support of the community. People in the movement are truly moved by the cause itself, and every single dollar raised goes back into the community.”

Last year, KultureCity raised approximately $500,000 through individual philanthropic support, family foundations, institutions, fundraisers and their primary event, KultureBall in Birmingham each summer.

“KultureCity started in Birmingham, and we are proud we are here,” Kong says. “We’ve been truly blessed to have the impact we have within the community. It speaks volumes for our team members and our volunteers.”

Maha, who has been featured in Tedx Talks, tries to limit travel, but he and his wife are in demand to discuss the project. “I try to make it a once-a-month kind of deal to travel, and the rest of the time the other team members get hit up,” he says. “It has been a very serendipitous journey. God brings the right people to us.”

The movement continues to grow. Some of its members are celebrities who use their platforms to spread Kulture-City’s mission. They include Daniel Platzman and Ben McKee of Imagine Dragons, actor Noah Wiley of ER fame, NFL standout Tiki Barber, wrestling star Brandi Rhodes and actor Christopher Gorham.

“We are blessed to have influencers in different disciplines supporting us,” Kong says. “They push the boundaries for inclusion.”

The emotional diagnosis and the painful experiences the family went through eventually revealed, not isolation, but connection. And purpose.

“We realized our journey is like other families with similar experiences — the same song, slightly different lyrics,” she says. “Social isolation is real, and we wanted to change the world and society for our children and generations to come. When you think about changing the world, you wonder how. It seems huge, insurmountable. You start it by changing the person in front of you.”

Cara Clark and Art Meripol are freelance contributors to Business Alabama. Both are based in Birmingham.

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