Photo credit: KultureCity
I’m thrilled this week to welcome Dr. Michele Kong, the co-creator of the largest nonprofit on sensory accessibility and acceptance, KultureCity, and board member, Daniel Platzman, who is the drummer of the band, Imagine Dragons who join us to discuss this incredible organization that “makes the nevers possible” by “creating sensory accessibility and inclusion for those with invisible disabilities” including autism. In just 7 short years they have managed to inspire thousands of volunteers across the United States and internationally to make large sporting and other venues Sensory Inclusive™ Certified. It is such a pleasure to have them on the podcast!
KultureCity: Sensory Accessibility and Inclusion
An Awareness around Sensory Sensitivities
Growing up with an awareness around sensory issues, thanks to his mother (see our Insights video above), Daniel had a unique perspective before joining KultureCity. He also experiences sensory processing challenges himself, so hearing more and more about sensory issues, it drew him to the cause even more.
What sparked the creation of KultureCity?
I asked Dr. Kong about how KultureCity started. I watched the videos (below) of her husband and co-founder, Dr. Julian Maha, describing a couple of unfortunate incidents around getting asked to leave a museum and their son being harrassed at the hair salon. I wondered if these negative experiences were pivotal in their idea for KultureCity, or were they already thinking of it?
She said that as an ICU doctor, and her husband being an ER doc, they were aware of autism, but until their son was born and they had to navigate the challenges, they hadn’t realized how much the world was not well-suited to autistics because of the lack of understanding of who they are, and why they do what they do.
It’s not just the knowledge, Dr. Kong continues, but also how we can accept and include them. The museum and salon were seminal events, she shares. She was nervous enough going to get her son’s haircut as it was, given previous experiences. So she had made all the arrangements in advance: the parking lot was empty, it was mid-day, it wasn’t going to be busy, the hairdresser knew they were coming and they discussed strategies in advance. Michele was still apprehensive, but he was doing pretty well.
What is 'Affect Autism'?
Affect Autism is really about promoting the same things that KultureCity promotes: Instilling a feeling of safety, acceptance and inclusion and we do it through a model or approach called DIR/Floortime which stands for Developmental–that is, meeting a child or individual where they are at in that moment–not putting demands on them that they can’t handle, Individual differences, which absolutely includes sensory sensitivities, and Relationship-based, which is how all humans develop–through warm and nurturing relationships with those they can trust. And we use affect to instill that sense of safety and to create positive, playful interactions in sharing joyful experiences together.
Caregivers interested in implementing DIR/Floortime with their children are welcome to attend the free weekly virtual parent support meetings that I facilitate for the Interdisciplinary Council on Development and Learning, which is the home of DIR/Floortime.
But while he was getting his hair cut and vocalizing, which Michele understands, but others may not, someone came from the corner, grabbed him and asked why he was being so naughty, which struck Michele to the core. Events like these made her realize things needed to change and there needed to be a culture shift so people would understand why this mission is so important. It’s great to change one person’s understanding, she shares, but it needs to be more wide-spread.
Unless we do something, our kids and individuals with invisible disabilities will be invisible, quite literally in that sense of the word, and they will never truly be able to be included in society.
What does KultureCity do?
KultureCity is all about inclusion, Dr. Kong asserts. They realize the first big step is understanding and for people to know what it means to be excluded because if you aren’t aware about sensory processing difficulties, you don’t understand. Their first mission is training and education for individuals and for public venues that provide services including museums, zoos, schools, airports, or sports and concert venues. They provide venues with sensory bags that include headphones and fidget tools. They aim to equip people to have the understanding and skills to be inclusive of everyone.
If you scroll to the bottom of this link, you will see a map that I shared in the YouTube video interview of all the sensory inclusive venues including the Rogers Centre in Toronto where the Toronto Blue Jays baseball team plays, and where many concerts are also held. I then shared the link of KultureCity’s Team where I commented that not only have they brought all of these venues on board and trained them to be Sensory Inclusive™, but they also have a number of well-known celebrities and professional athletes and the like on their team including Daniel which really helps to get the word out. I asked him why this is so important to him and the band to be a part of KultureCity.
Daniel said that being aware of sensory processing difficulties made KultureCity something he already wanted to be a part of, but on top of that, being in a touring band that goes to venues and realizing that some fans might not go to an Imagine Dragons concert because they don’t feel safe really hits home. It goes deeper than that, he says, because if one person in a family doesn’t feel safe, then the entire family won’t go. There could be so many people who want to come to a show, but can’t and we need to do something about this, he states. KultureCity makes it possible for sensory sensitive people to attend events like his band’s concerts.
My favorite thing about KultureCity is that the onus is not placed on the individual with the invisible disability. The onus is placed on us, on society, to be better and to rise to the occasion to include everyone.
I asked about the Sensory Activated Vehicles (S.A.V.E.) that make events accessible when there is no place for a sensory room, or for outdoor venues. The vehicle is the sensory room. Michele says they realized that sometimes you just need one or two minutes. You might really be enjoying a concert and the music, but something becomes overwhelming, whether it’s too loud or something else. Prior to KultureCity, she continues, if a person has a dysregulated moment and has to leave, the whole crew needs to go. The S.A.V.E. is a quieter mobile space that has bubble walls, bubble tubes, and headphones where you can go to take a break.
Daniel says that early on when joining KultureCity there was a story about a family at a hockey game in Atlanta, when they still had an NHL team. Whenever a goal was scored, a giant bird in the air would shoot fire, loud sirens would blare, and strobe lights would go off. There were three goals scored in the first four minutes of the game one night and an individual with an invisible disability had a meltdown. Luckily, the staff were trained, they were able to spot the person in crisis and help them go to a quiet spot to collect themselves, then come back in. Re-entry is a big part of the training, Daniel explains, because sometimes the staff say, “No. There’s no re-entry.“
Daniel continues that the mobile sensory rooms are really great when there is no inside. They used them at his bandmate, Dan Reynold’s LoveLoud Festival, to make the festival Sensory Inclusive. They had so many people telling them that the mobile vehicle (S.A.V.E.) made all the difference in the world about being able to attend and allowing the whole family to have a good time. Just reading the testimonials tells him that they’re really on to something.
Dr. Michele Kong says that coming soon they will be introducing an even more portable and accessible mobile product than the S.A.V.E.!
Making a Difference
Daniel recalls a story from a security guard who learned in his KultureCity training about how leaning on something can be due to a vestibular issue–needing to touch something for balance and spatial awareness of where their body is in space. It was really enlightening for this guard who could think back on patrons they had not handled correctly, and this was the missing puzzle piece. In general, Daniel declares, people are just unaware about invisible disabilities. He believes that people are naturally compassionate and empathetic enough that once you’re aware of it, it’s automatic.
Dr. Kong adds that, on the family side, sometimes just knowing you’re included is all that you need. They’ve had families who go and never end up needing the services. They’d then have the venue ask why they need all these things if they aren’t used. But the key is that just knowing that it’s there for them to use should they need it, and that they’re included and accepted (by understanding that they’re not being difficult, etc.) gives families who are impacted so much peace, comfort, courage, and the strength that you need to say, “I’m going to go to the concert today and enjoy the music because I can, and people want me there” Michele explains. It’s such a huge piece, she says.
Sensory Inclusive™ Training
Michele shares an example of a police force who were certified who gave feedback that it wasn’t just something they had to do like a check box. It really made them realize how much this would impact the way they engage with the people around them and shape what they needed to do. The training is broken down into segments with the first being education about what it means to have a sensory sensitivity, she explains, and what it looks like. Then they get into why it’s important for them to know about it. They talk about how it’s very common. Most people know someone who has an invisible disability or have one themselves. It makes it more personal.
Next, they talk about what to do when they encounter someone with a sensory issue. What if they see someone flapping their hands or covering their ears, for instance. What does that mean and what are some of the tools they can use? They talk about the noise-cancelling headphones, the lap pads, and then about communication, which is just as important as the tools. How should you communicate with them? What cadence in your voice should you use? They provide tangible tips and tools that they can use immediately upon completing the training.
They also use Social Stories which they can help the venue create that walk through of the steps of what will happen when you arrive at the venue and throughout the event. It can reduce anxiety for those with sensory sensitivities by giving them visual cues of where things are and what they look like. It’s been a powerful and useful tool for the venues and for the families alike, Dr. Kong tells us.
I compared their training to training done by Self-Reg in Canada and DIR/Floortime where those being certified first figure out what makes them dysregulated, and complete a sensory processing profile on themselves first, in order to be able to relate to what they’re helping others with. Everyone can relate to that tag on your shirt or a picky wooly sweather being uncomfortable, for instance. It helps them have more compassion for what others are going through with their sensory sensitivities.
KultureCity is not just helping autistic children. You can have sensory needs for a variety of reasons. They’ve helped young children through to elderly people with dementia and Post Traumatic Stress Disorder, Obsessive Compulsive Disorder (OCD), seizure disorders, Downs Syndrome, strokes, among others–anyone with an invisible disability, Michele says. It’s a big slice of our community. Imagine if this portion of our communities don’t participate, she adds. Everybody misses out.
Our society is not whole until everyone is able to engage.
I mentioned that some people might say, “Oh, just get over it,” but Daniel adds that the concept of a sensory crisis doesn’t make sense to you if you do not understand it. If you’re unaware of what it would feel like or can’t imagine it, you can’t relate. That flashing light is like actual pain to some, he adds. Everyone can relate to things like the tag in their shirt. It’s just a matter of education.
Michele adds that a reporter once asked her why people would want to go to a music festival if they are super sensitive to sound if it’s so loud and crowded with people. She just made the assumption that they don’t want to come and shouldn’t come due to their barriers. Michele in turn asked what about if they like the music and want to go? Daniel adds, “What if you didn’t feel safe going to the library?” The fact that some people don’t feel safe going to an aquarium, for instance, which he considers a tranquil place, made him realize this is more than just about concerts–it applies to everything. Michele seconds that: it’s anywhere that’s public including grocery stores, schools, airports, and more.
Working with Schools
I asked Dr. Kong about their work with schools. She said they typically work with individual schools directly, rather than at a district level. They’ve put a lot of sensory rooms in schools, again, so kids can have a place to decompress. They also have designed and piloted mobile sensory stations for families to use at home during online schooling that includes a bubble tube, wands of light, and calming and soothing noises.
KultureCity’s Mobile Phone App
KultureCity also has a mobile app where you can look up sensory certified locations and suggest locations that you’d like to see become sensory certified. Dr. Kong says that when you input a location, their team will get a notification and can reach out to the location about how to make them Sensory Inclusive™. The mission has translated well, she explains. People understand why this is important and have tended to reach out to them to be trained whereas at the start they were the ones reaching out. They started with the National Basketball Association (NBA) in Cleveland and it quickly spread to other sporting venues, and then to music festivals and events. Once you have that momentum, people want it and it falls on KultureCity to meet the demand, she shared.
Funding for KultureCity
They had a group of angel donors who believed in the cause and wanted to help out, so KultureCity was able to start the initiative and start the work without having to do grassroot fundraising, unlike other groups who have to spend the first few years marketing and fundraising. From there, the stories and testimonials of how many families were impacted really drove the mission forward. A big part of their fundraising has been the KultureBall as well, where Daniel’s band has performed more than once. Daniel said that it’s a great time and he rates the ball a 10/10!
In 2021, the Imagine Dragons performed at the KultureBall and Daniel says it was their first performance in a long time, so it was special. He said the KultureBall is a multi-day event with a lot happening in Birmingham, AL. He says there’s always something special about performing for an audience that isn’t necessarily there just to see you, and you have to win them over. Also, playing acoustic where you have to be the presence made it a lot of fun. The work that the Imagine Dragons do with KultureCity, LoveLoud, and the Tyler Robinson Foundation for pediatric cancer, Daniel says, makes them feel so good over just promoting themselves.
In April, 2016, Michele ran the Boston Marathon with her friend Tiki Barber and when they got to about mile 20, the idea for KCFit was born. They were thinking about all the families they were running for by naming people each few minutes as they were struggling to finish. When they crossed that finish line, they felt so empowered, because every step they took was for a child and a family. They decided they could use biking, swimming, or running to raise money for a cause. That November in 2016 they put together their first KCFit team at the NYC marathon, and have done that marathon every year since, along with others in Boston, Chicago, and other cities.
I shared that when recording this podcast, it was Terry Fox season here in Canada where there are runs all over the country to commemorate Terry’s run across the country with a prosthetic leg while he was fighting cancer. I have done Terry Fox runs since I was a kid and wore a necklace of the Terry Fox loonie during my half-marathons to inspire me. A full marathon is on my bucket list, so I told Michele I would like to join her in 2022. Daniel says he would like to eventually as well, and that drumming is his extreme sport. He could drum at every mile, he suggested, or I proposed breaking a Guinness world record for drumming.
In April 2021, KCFit broke a Guinness world record for number of people running 5 kilometres simultaneously and virtually! They had participants from France, Germany, Brazil, North America and everyone had to be stationary until Michele said, “Go!” and then they all ran 5 kilometres.
This cause is obviously near and dear to my heart because of our personal journey, but at the same time, we cannot do this alone, and it’s only when every single one of us stand up for our neighbor, our friend, you know, that somebody else, that we can truly affect change and make this happen for our world and for the next generations to come, and we have to. We have to do it.
This week's PRACTICE TIP:
This week let’s think about how can we make our local environments more accessible for our child’s sensory sensitivities.
For example: What public place does your child enjoy going to most? Is it because it’s sensory inclusive or could you suggest it become Sensory Inclusive™? Where does your child feel most comfortable in your home? Could you make your own home more sensory inclusive by carving out a sensory room or area for them?
Thank you to Dr. Michele Kong of KultureCity and Daniel Platzman of the band Imagine Dragons for sharing their vision and experiences of this wonderful organization with us. If you enjoyed and found it useful and helpful, please do share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Learn more about KultureCity on their YouTube channel or at their website, and please consider making a donation here to support their work.
Until next week, here’s to choosing play, and experiencing joy every day!