Humanity · Jul 01, 2018

A Whole New Kulture

Words by Paige Townley

Photos provided by Kulture City

Michele Kong and her husband, fellow doctor Julian Maha, knew all about the medical aspects of autism: the symptoms, the diagnosis, and how to manage it. But it wasn’t until they had it in their home that they learned its real challenges and the impact it has on families. “Our son, Abram, was diagnosed, and it was then that we truly saw what it meant functionally for the child and how that dynamic changes within the family unit,” Michele says. “We saw firsthand the challenges families encounter, which we never saw as doctors.”

Those encounters, as difficult as they could be at home, were even more difficult in public. It made venturing out with Abram too challenging to attempt at all. “We’ve been kicked out of so many public places because people would think our son was misbehaving, but it would be sensory deregulation,” Michele explains. “The social isolation we could only imagine became real, and we saw and met other families with special needs individuals experiencing the same thing. We knew something had to change.”

That need for change led to the creation of KultureCity, a nonprofit movement with the goal of encouraging acceptance of those with autism and any other individuals with special needs. “We realized that what needs to be changed is the culture,” Michele says. “Unless there is a cultural shift—a change in mindset on how we integrate these special needs people into our community—change will never come.”

Integrating special needs individuals into the community, Michele explains, means meeting them where they are—recognizing their potential and looking beyond traditional methods to help them. That’s exactly what KultureCity was created to achieve: redefining accessibility for those with special needs and pushing the boundaries of inclusion. “That means understanding the sensory needs they have and accommodating the people better,” says Michele. “We want everyone, regardless of their challenges, to be able to be included in our community.”

Through specific and focused initiatives, KultureCity is creating ways to help them better integrate into society. One way is lifeBOKS, a free toolkit KultureCity developed to offer aid to those with special needs who wander. Wandering, sometimes referred to as elopement, describes situations where someone with special needs leaves a safe area or a caregiver.. “Special needs individuals can be prone to wandering, which makes you think twice before taking a special needs person outside, and that’s a real challenge,” Michele says. “It becomes another barrier for regular and vital social interaction, which leads to greater and greater isolation, which can tear otherwise healthy families apart. lifeBOKS provides a layer of protection to overcome fears and tear down that barrier.”

KultureCity is tackling isolation and non-inclusion on a much larger scale with its sensory initiative, which seeks to help those with sensory challenges experience the same activities most others can by making facilities “sensory inclusive.” Many with autism are affected by extra-sensory sensitivities, including sensitivity to noises, textures, and proximity to other people. The initiative includes training a facility’s staff, performing site assessments to find areas that can be turned into quiet “safe” spaces, and creating sensory bags that have items (noise-canceling headphones, sunglasses, etc.) needed if an individual becomes dysregulated. The initiative started locally for KultureCity, who worked with Birmingham establishments like the city zoo, McWane Science Center, and the Alys Stephens Performing Arts Center. Just a short time later and KultureCity has now worked with nineteen professional-sports facilities across the country to create a sensory-friendly atmosphere—with many more seeking out KultureCity for guidance on how they can become sensory inclusive. And now KultureCity is taking the initiative international. “More people are realizing the need for this,” Michelle says. “We’ve been contacted by venues in Australia to bring the sensory initiative there.”

A milestone for the organization was the launch of the KultureCity app, which provides a directory of sensory-inclusive locations nationwide. Users can search for these venues and discover all the special-needs services they provide, resources needed to visit each location, and tools to help prepare a special-needs individual before the visit, along with a library of videos on autism and other relevant topics.

“We’ve accomplished a lot in the last four years, but we still have a lot to do,” Michele says. “There are many more places that need to be sensory inclusive, and we’ll continue pressing on until our mission is complete.”