Neurological Safety and Creating Your Happy Space

PHOTO CREDIT: Clare Kumar

On Episode 294…

Clare Kumar is a late-diagnosed AuDHD mother of two young adults in Toronto, Canada. After twenty years as a productivity and organization coach, today, Clare spends her time and energy thinking more collectively about performance; she believes everyone deserves to be able to offer their best. Far too often, neurodivergent people burn out, or opt out when–in fact-they have been designed out. Clare encourages organizations to create “neurologically safe” spaces, cultures, and experiences where their guests can move forward with ease, or “keep calm and carry on”. She offers engaging, interactive keynotes and advisory services. She is the host and creator of the Happy Space Podcast – where inclusion meets design.

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How Did Clare Get Here?

Clare attended many schools growing up and loved school and learning–specifically science and biology. She quickly realized she couldn’t stand the smell of formaldehyde. She followed up with a business program with a focus on marketing, which she loved for the mix of analytical and creative thinking–the structure of autism and the “free-wheeling” of ADHD. She worked corporately for 15 years in telecommunications and loyalty marketing in finance, sales, marketing, internal communications.

Clare felt like she was designed out of the corporate world because of a lack of flexibility around the working environment. The construct of work includes the work environment, and then there’s everything around the work environment including the commute and the expectation to dress in panty hose and stilettos. She learned the hard way that birkenstocks and panty hose don’t mix one morning getting ready for work when she tumbled down the stairs. It was the beginning of realizing that the construct of work was too demanding for her nervous system–not the work itself, but the rest.

Clare later learned about high sensitivity from the book The Highly Sensitive Person: How to Thrive When the World Overwhelms You and wondered if it is her sensitivity to visual stimulation that drove her need to organize her world to calm it down. Her relationship with high sensitivity got her into talking about neurodivergence and it wasn’t until reading The Divergent Mind: Thriving in a World That Wasn’t Designed for You that Clare realized that the author Jenara Nerenberg gets it. Sensitive people are definitely part of a neuro-atypical way of being.

The Happy Space

And so Clare started her podcast in April 2022 focusing around highly sensitive people and understanding that temperament, which is not considered a disorder. But it wasn’t until she interviewed a woman named Melanie Deziel, who was also late diagnosed with autism, that she understood more about autism. Clare proceeded very quickly felt compelled to obtain a diagnosis due to being in the space of talking about design and inclusion. Clare has products on her website including shirts, and one of them says, “Diagnosis is Privilege.” To use a label, Clare says, our needs can be identified and Clare is a more a fan of the social model of disability over the medical model.

Clare has refocused her podcast on this belief that we’re squandering talent, unintentionally, through inhospitable containers, space, culture, and experience. She has a drive to invite the world to create safer places for us so that more of this giving and receiving can happen. I loved that Clare brought up that it’s about understanding our needs, the “I” in the DIR model, which is all about the individual profile. I shared that when examining my own “I,” I have asked myself, “When do I thrive? When do I cave?” and I try to understand these needs because I think I’ve just been moving through life like a robot, not ever reflecting on that! 

Certainly COVID brought that to light for so many people–especially in autistic people in workplaces–wanting to negotiate working from home, which Clare has talked about on her podcast. 

The Hidden Disabilities Sunflower Program

The yellow sunflower on a bright green background is a symbol of the hidden disability. The Hidden Disabilities Sunflower programme actually started at Gatwick Airport in London, England in 2016. You’ll see somebody wearing a lanyard, a pin, or a button to indicate, voluntarily, if they wish–in a situation where they think it might help them–the fact that they have a nonvisible challenge, disability, or condition. And it was Gatwick airport that recognized that people were coming into their airport with needs, but they couldn’t tell what they are.

The company started just fulfilling that need by creating the sunflower symbol and offering that as a tool to be able to make the nonvisible visible, and it’s now grown to over 330 airports, Clare tells us. It’s in almost 60 countries, formally, and 90 plus informally. Clare actually grows the program in Canada, which she says she is really privileged to do because it’s it’s a tool. Some people will also say, and I’ll say this right off the top. Some people say that they don’t want to wear anything and what Clare loves about the tool is that it’s completely voluntary and that it’s subtle. 

If people don’t know about it, Clare continues, they just think it’s a beautiful lanyard and might ask about it, and then it can prompts a conversation. Clare says they have companies that join as members and this is how compassion is being spread in the world. They create awareness about the sunflower with their employees. Those employees then know how to respond when they see the sunflower symbol and meet that person with more time, more patience, and more compassion. 

It doesn’t get you anything specific. It’s up for every organization to figure out what that means, whether it’s in an airport lineup where people need assistance. Clare has been with the program formally for over a year and has been wearing the sunflower when she travels. As an autistic person who’s very sensory sensitive, it is Clare’s environment that can render her disabled and it has in numerous different ways–sound and motion can render her completely incapacitated. It’s really been powerful for her to see the flash of recognition on an employee’s face, she shares.

There’s psychological safety to know that you can speak up, she says. She can request a more sensory supportive environment and make her needs known and they’ll be received with a willingness to come and meet her where she is. It’s a super powerful program. She is so delighted to be in touch with people that are creating compassion: people who care about people.

Environmental Adjustments

I asked Clare how she is involved with physical changes in airports or workplaces and referred to the professor she interviewed from University Laval in Quebec City, Ernesto Morales, who is working with the government to make changes. They did a study with a number of people with disabilities who are in wheelchairs or have other different types of disabilities. Clare gave me the example of just returning from a trip and the lighting in Terminal 3 at Pearson airport in Toronto was brutal and gave her a headache. I asked what she will do with that information and what change will come of it?

Clare is very appreciative of Pearson Airport and the Greater Toronto Airports Authority being members in the sunflower program. Clare makes observations, noticing what could be more calm, more pleasing, more engaging, and more neurologically safe. She is currently building a series about this with a self-reflection worksheet on one’s relationship to sound which prompts individuals to be able to articulate what’s a great or difficult sound for them, why, and what it evokes in the body. She is grounding it in science and around the overall energy tax being placed on humans. Her goal would be to then adopt design guidelines which go a little further.

For example, Clare continues, the British Standards Institute has a guide to building design that is supposed to be more neurologically safe. That’s Clare’s term, not theirs. It includes lighting recommendations that says 3000K for lighting is the minimum lighting color temperature. 2700K is about the same as a typical incandescent 60W bulb that you have in your home so that gave a warm glow. You didn’t feel glare, you felt comfortable, she emphasizes. The Kelvin talks about the color temperature or the warmth of the coolness of the color of the light and so 2700 feels feels good.

We need to go to 2700 as one aspect of lighting. We also need to make sure that we’re not having cheap LED lighting. The way they color the light to create the yellow is a coating of phosphorus and that phosphorus coating wears off over time, Clare explains. Some lights were just changed in the hallway of Clare’s building and they were turning dingy and green. She talked to the handyman as he was changing the light bulbs and when she looked at the 60W LED, there was no color temperature on it, but on the picture of the box there was actually options for different colors. It turns out that you can change it from cool to warm on the light bulb, so he went through and changed all the bulbs and now, on the 49 stories, they’re all going to be changed to be the right color temperature!

Clare’s hypothesis is that highly sensory sensitive people, including autistic people, and many more, are paying attention to stimulation of the nervous system that is actually toxic and detrimental to the human body and invites us to just have a greater tax on our day and leave us with less energy. She was speaking with Milton Shinberg, author of People-Centered Architecture: Design, Practice, Education (people-centred design) who agreed and said, “We are the canaries in the coal mine,” which is basically the title of Ludmila Praslova’s book, The Canary Code: A Guide to Neurodiversity, Dignity, and Intersectional Belonging at Work which is all about neurodiversity at work.

Clare believes that there is starting to be a recognition that some of what we notice should evolve towards being standards in design. She hasn’t seen the guidelines catch up or even any articulation that they need to be paid attention to. Her work on the Happy Space Podcast and on the book she’s working on around this concept of neurological safety is to create some guidance around not just sensory support, but cognitive kindness around cognitive overload with the kind of information we’re asked to process nowadays.

Clare runs her my own business and also does the sunflower work. One is in Google Land the other is in Outlook Land and she had to figure out how to bring those two worlds together. Clare believes that we have an opportunity for sensory support, cognitive kindness, and emotional engagement in our spaces, cultures, and experiences and that’s what this body of work is all about.

Energy Tax

Floortimers will recognize a lot of common overlap with Clare’s work when she referred to “emotional engagement” which is Functional Emotional Developmental Capacity (FEDC) 2 in the DIR® model, “Engaging and Relating.” When we put up these barriers in the environment, autistic individuals cannot possibly engage with us, such as when they’re dysregulated by the sensory environment. I love how Clare described that as an “energy tax.” We’ve talked about spoon theory and cognitive load, but I love the term “energy tax.”

Clare has been reading a lot of architecture and design books right now and she read about an example of an art installation where there was a white room, and the corners were rounded, so you would go in and feel like you were in a whiteout. Next, you were moved forward into a red room, and you could look at the red for a while, but then would feel fatigue from the red. When you turn back to look at the white room, it no longer looks white. Your eye makes up for the exhausted red cones and gives you green and you see green room where there’s a white room, Clare explains.

Clare gave another example of attending a long lecture and how you come out, not having moved your body, but feeling exhausted. Listening takes energy, and we minimize these energy expenses that we are asking of people, she insists, so she suggests that neurological safety is also energy management. I shared how I see so much potential in the research areas to look at what’s happening in the brain when you’re overloaded with sensory simulation specifically in autistic individuals and highly sensitive people, whether they have a diagnosis or not, so that it’s not just a tally of self-report, but it’s also backed up with hard brain science, which almost makes it completely not an option for people to ignore.

Clare keeps coming up with questions that don’t have answers yet and hoping that research will keep growing in this field. She’s been trying to do research on the startle response and whether you can mitigate it or sensitize it to certain things. Can you habituate to it? There is some science that says autistic people cannot habituate as easily as others, so that heightened stimulation is harder to manage, she says, and gave some examples of her recent experiences with environmental noise where she lives.

Promoting Understanding of Audio Assault

If she can make a plea to anyone listening who thinks this is important, Clare says that–at every level of government–we need to remind the politicians that there’s a cost to this sensory assault. She calls it audio assault. She has been reading a book about how all sound is waves that are affecting the hair in our ears and the retinal cells in the eye. If we start to understand that biology is physics and then we can connect this to what we’re doing in the built environment and our behaviors, Clare suggests. We need to invite and guide a whole new level of respect for the human animal in the sensory experience, she insists. It’s our visceral connection to the world, and it can be a wondrous, beautiful thing that has led to our being able to survive and develop, but it is also unfortunately designing a lot of us out because we’re not caring for this environment, she laments.

When Clare worked with clients organizing spaces, she would use examples to illustrate how the experience of someone can affect them such as walking into a closet and taking a sweater from a pile of clothes. To the partner who organized that pile, disrupting that “order” can be like blasting music that you hate. It’s one example of how she’d communicate experiences to promote resolution in a household. Clare described it as “connecting viscerally to one’s own experience–positive and negative–to understand the valence of it.“

There’s a study out of London, Ontario, Clare shares, that researched people with modified, loud exhaust engines. The hypothesis was they were going to be narcissistic temperaments, but it was worse. It was that they were sadistic: they wanted to inflict harm on others. Those sound waves are not relegated to just the car experience and those “revs” of the engine, Clare shares. Those backfires by one person can disrupt hundreds of thousands of people. Does that not deserve to be held in check? How did we get to a culture that gives one person that kind of weapon? It’s difficult to chase a motorcycle, or police won’t do it because of the catastrophic consequence that could happen if you’re chasing a motorcycle, Clare says.

A beautiful example was brought up about a mayor in a city who used mimes to actually catch people in the act of disregard, Clare shares. Whether it’s social disregard with dropping garbage, or whether it was not crossing properly at the street corner, the mime would mimic them. So there was humor to point out, because nobody likes to be called out, especially when they know they’re doing something wrong. That gets the most viscerally, inflamed action reaction when somebody knows they’re behaving badly, and you point it out risky territory. Clare thinks that this analogy might offer up some possibility when you’re not dealing with someone that’s intending to inflict harm and feeling radically self entitled, which is post-COVID–a way a lot of people feel, especially in Toronto, where we were very heavily controlled and restricted. There’s a backlash to that now, which we’re all suffering from a little bit.

I suggested to Clare we bring it back full circle to the start of our conversation where we discussed the environment’s impact on somebody. I wondered–without justifying cruel behaviour–if some of these people inflicting audio assault are truly sadistic or if it is that experience of being locked down that elicited some kind of defense to whatever’s going on in that person’s world. Clare says that she has coped with the noise, such as hearing fireworks by trying to imagine the joy that somebody else is experiencing as a remedy.

Creating our Own Design Criteria

Clare would like to use the self-reflection worksheet as design criteria. Awareness is the place to start around what those individual needs then you can move into the understanding and action. For instance, Clare does not accept evening engagements once Daylight Savings Time ends unless she’s incredibly well paid! She doesn’t fight the dark season or winter. She rests and recovers, then in summer she will overdo it with all of the sunshine energy. Her batteries are in full force. She says we can tune in and notice what our environments are supporting us to do and inviting us to do, and stop countering it and override, because that override is what leads to the burnout.

Clare says that we can bring ourselves to match what we’re expecting ourselves to do with the container that is our home or work environment. What a much better life! Now that she designs her life, she chooses very selectively and she has much more energy and much more joy in navigating life. And I added, with that privilege, getting other organizations to do that so that people that don’t have that choice don’t have to fight through that like Clare did in the early days of her career. I also added that a lot of these different types of questionnaires were made by neurotypical people to attempt to understand what the neurodivergent experience was. But when we have neurodivergent people creating the type of questionnaires that we understand, it makes so much more sense!

Thank you to Clare for sharing her meaningful work with us. If you found this episode interesting and informative, please consider sharing it on social media.

Until next time, here’s to choosing play and experiencing joy every day!