The past four years have been busy for Michele Kong, M.D. In addition to being an associate professor of pediatrics, she is the co-founder of KultureCity, a nonprofit dedicated to creating a culture of acceptance for children and others with disabilities. Her work with KultureCity has earned her the 2017 Odessa Woolfolk Community Service Award, established by UAB to recognize a faculty member who has rendered outstanding service to the Birmingham community through education, economic development, health care delivery, the arts, social services, human rights or urban and public affairs. She will be recognized during the faculty convocation ceremony this fall.
Kong’s work with KultureCity spans many of those categories. She and her husband, fellow local physician Julian Maha, co-founded KultureCity four years ago after their oldest son, Abram, was diagnosed with autism at age 4. Abram is minimally verbal, Kong said, and despite their medical training, the family soon found themselves isolated within their community.
“When you have a special needs child, you’re constantly taking them to therapy, to hospital visits and doctor visits,” Kong said. “It’s hard to go out for a meal or to an event because it’s not set up for them, and the family deals with the extra burden.”
Kong said she realized her story wasn’t unique, and that many families deal with the same issues. She and Maha formed KultureCity to help educate communities on ways to raise awareness and acceptance of people with special needs.
“That night four years ago, we said, ‘Something has to be done. What can we do to change this?” Kong said. “Every child has great potential, and it’s up to us as parents and care providers to help them grow and fill that potential. That’s how KultureCity was born. We thought the main thing that has to change is the culture. We have to help them, accept them and figure out how to meet their potential.”
Spreading the word
One way KultureCity helps create a culture of acceptance for people with special needs, Kong said, is by holding workshops at venues or other businesses to teach the staff and volunteers ways to create a more welcoming environment.
“Every child has great potential, and it’s up to us as parents and care providers to help them grow and fill that potential. That’s how KultureCity was born. We thought the main thing that has to change is the culture. We have to help them, accept them and figure out how to meet their potential.”
The Birmingham-based initiative, which began with educational sessions at places such as the Birmingham Zoo, has grown into a nationwide enterprise. During the past several months, the KultureCity team has expanded its training to NBA teams, recently traveling to the Quicken Loans Arena, home of the Cleveland Cavaliers, and with plans in the coming months to visit the AmericanAirlines Arena, home of the Miami Heat.
“The foundation of training, and it doesn’t matter if it’s a zoo, an arena, a hospital, a clinic or a restaurant, is to teach the volunteers and staff what it means to have sensory challenges,” Kong said. “Once you know what it means to have those challenges, you can recognize them and understand the best methods for communicating and engaging with those individuals. It’s about how to help them get past the crisis and enjoy the facility, or, if you’re a medical provider, how to help them come to the right diagnosis.”
One of the most promising aspects of Kong’s work is the Sensory Program piloted within the past year in the Children’s of Alabama Emergency Department.
Emergency rooms can be overwhelming places, Kong said, with bright lights, loud noises and a lot of hustle and bustle — all of which can trigger a child who is more sensory-sensitive. The program encourages clinicians to pay special attention to children who have difficulty with sensory overload.
“By giving kids noise-canceling headphones or making the room a little darker, you can help calm the child down,” Kong said. Then a physician can learn why the child came to the Emergency Room in the first place and make a medical diagnosis.
The six-month data from the pilot program, Kong said, has generated positive feedback from patients, their families and caregivers who feel more comfortable dealing with special needs children and their specific issues.
“As a pediatrician, I work in an acute-care setting, and often we encounter children who have sensory sensitivities — for instance, those who are on the spectrum or have Down syndrome,” Kong said. “They might come to the hospital for an ear ache, but if the light is too bright or it’s too loud and overwhelming, the sensory overload can be a barrier to diagnosis as it may be difficult to tease apart why they are agitated.”
By educating medical providers and staff about issues related to sensory dysregulation and providing accommodations for children with sensory sensitivities that may mitigate these challenges, the health care provider is better able to diagnose the child, she said.
The gift of tech
In addition to education, KultureCity also is dedicated to making life easier for families of children with special needs. Its tablet:KULTURE initiative provides tablets such as Kindle Fires or iPads to families with minimally verbal or nonverbal children, which can help them make “significant and rapid gains” in communication.
“Once there is knowledge, automatically comes the empathy. Before that, you don’t know what they’re going through, and it’s natural for us to make assumptions. But once you realize why they are having a meltdown, why they are screaming, with that empathy comes inclusion and acceptance.”
KultureCity also provides families with lifeBOKS, a free kit containing a Bluetooth tracking device, a shoe ID with QR code technology, window and door alarms and temporary identification tattoos. Fifty percent of autistic children wander or bolt from safety, KultureCity.org says, and more than 60 percent of their families avoid activities due to the fear of wandering.
“Unlike typical kids, when you call [an autistic child], they don’t answer back, or they might run away further,” Kong said. “Incidents of drowning and wandering are high. We realized there wasn’t anything readily available to families to help prevent this.”
A culture of change
Kong said KultureCity’s greatest priority is helping communities understand what it means to have a disability. This means showing people there is a need for more accessibility and that it is possible for communities to become more accessible.
“We get excited to see people and institutions and facilities stepping up to the plate and saying, ‘We want to serve. How can we do that?’” Kong said. “Sometimes you don’t realize the need is there. Once you see it, you can’t un-see it.”
In the end, Kong said, the goal is to change the ways people with disabilities and their families can interact with their community, and show community members the reasons they should care and the ways they can be a part of the solution.
“Once there is knowledge, automatically comes the empathy,” Kong said. “Before that you don’t know what they’re going through, and it’s natural for us to make assumptions. But once you realize why they are having a meltdown, why they are screaming, with that empathy comes inclusion and acceptance.”
To learn more about the foundation, lifeBOKS, tablet:KULTURE or to or donate to KultureCity, visit kulturecity.org.