Fozzy Lai and Xander Matthews are creating neuro-inclusive spaces where people can take a break from crowds and the sensory overwhelm of big events. At this year’s 2022 Toronto Comic Arts Festival, they’ll be launching their project, Retreat, which provides “a place to stim freely, drop the mask a little, and find some neurodivergent kinfolk.”
Xander is “a neurodivergent, Black, disabled, trans boy who wants to create community for the people who feel lost within the system” and Fozzy is an “autistic, chronically ill, queer sewist and parent committed to radical interdependence and community building.”
After several years at craft markets selling stim toys and self-care kits Fozzy and Xander realized they were not just selling products, they were also affirming the needs of people in the community and doing neurodiversity advocacy as well. With Retreat, they’re meeting an immediate community need and at the same time advocating for more neuro-inclusive spaces like Retreat.
I chatted with Xander and Fozzy recently about Retreat and what inspired them to create it.
Anne: How did Retreat first get started?
Fozzy: When I got my sewing machine back in 2015, I decided to make myself a self-care kit to carry around in case I had an anxiety attack. It included a fabric bean labyrinth, a little lentil-filled monster, an eye mask and a removable pocket for meds. I called it the Spoonie Bag. After making it for myself, I realised others would probably like it too, so I started an Etsy shop called Fuzzwumpet, and started selling them at markets. Soon after Xander started helping me out, and Xander was a perfect partner.
At markets, people often stayed and played with the fidgets, reluctant to put them down. There were also a lot of people who didn’t know what a stim toy was, or who hadn’t heard of Spoon Theory, so there was also an element of education and advocacy that happened as a by-product.
When the pandemic hit in 2020, I was forced to take a break, and that time gave me the chance to re-evaluate. I loved what I was doing, but being a one-person assembly line was burning me out. In fact, I had missed the last day of my last market due to a flare up of one of my chronic conditions. After a lot of thought, I decided to retire the business. Still, I didn’t want to give up the experience of connecting with other neurodivergent folk, and the feeling of doing something positive for my community.
Anne: How did you come up with the idea of Retreat?
Xander: My experience with Fozzy at fairs really factored into the idea for Retreat. I remember our table being somewhere people loved to use to just take a breath, and that made me feel like we were doing something really important. We could always see when someone just needed a break, and honestly, that really opened my eyes to the need of a space like Retreat.
Fozzy: One of things we noticed at markets was that people would get this look of relief on their faces when they found us. It wasn’t just because they were stimming with our toys; they were also just happy to talk to other people who understood. We started talking about how cool it would be to have a quiet room at the markets with a variety of things to help people self-regulate. The problem, aside from the fact that we’d been too busy selling at our table, was that the markets we sold our stuff at had small budgets and limited space.
We decided to approach the Toronto Comic Arts Festival (TCAF) for our launch, because it’s a big event with a lot of experience—that also attracts a lot of neurodivergent attendees, based on our own observation. Seeing TCAF’s enthusiasm when we met with them was really exciting, and they’ve been great to work with.
Anne: Why are spaces like Retreat so important for inclusion?
Xander: I know that, for me, it’s important to have spaces like this because it gives a sense of community to people who tend to be pushed to the sidelines. This gives us somewhere to unmask, and be with others who know what we’re going through. It gives people a chance to go to events that otherwise make them anxious, or just wholly uncomfortable. The Comic Arts Festival is an event I personally love going to, but it’s true, it can be extremely overwhelming to go to an event like that. I know that having somewhere calm and inviting to go sit, de-stress, and just be yourself will make the experience of the whole event that much better.
Fozzy: I know that for me, I generally just don’t go to any busy events because they’re so overwhelming with all the people and noise and everything. I was able to sell at markets because I was safe behind my table and I had a solid script for my interactions as a seller—but as a patron it’s a different story. The only big event I’ve regularly attended here has been TCAF, but it’s always been hard; my brain is fried before I’ve even looked at half of what I want to see. I often wished there was somewhere to take a break away from the crowd without feeling like that kid that has to escape to have a meltdown in the bathroom (literally how I spent much of high school, lol). I have a lot of friends who avoid events that really interest them for the same reason.
Anne: Have you seen other attempts to create such spaces, and if so, were there barriers to creating them?
Xander: Honestly, I haven’t seen spaces like this. Whenever I would go to an event, especially one that’s inside, the only way to get away from the stressful situation would be to go outside—but that’s not optimal either.
Fozzy: I have heard of quiet rooms at some conventions. What I’ve seen in my Google searches is that the focus is often just on being quiet. While that’s great, I don’t think that’s really designed from a neurodivergent perspective. Sitting still in a quiet room isn’t necessarily the best thing, when you need to stim, and the fluorescent lights are buzzing, and you can hear the electricity in the walls.
As for barriers, the biggest barrier is space. Organisers just aren’t thinking about it when they book space. So I guess the biggest barrier is actually that the neurodivergent community and our needs are still an afterthought, if they think of us at all.
Anne: What does an ideal Retreat space look like?
Fozzy: Retreat isn’t just a quiet room, it is an explicitly neurodivergent space. Nothing about us without us, right? It’s a place to stim freely, drop the mask a little, and find some neurodivergent kinfolk. We’ll have chairs but also cushions for sitting on the floor. There will be different kinds of stim toys, stuff for doodling/drawing, and some plushies for hugging. We will also have ear plugs and eye masks for people who need to block out some stimulation. I also want to make it clear that we are operating based on a clear set of values grounded in intersectionality and community care, the room will always be staffed, and we will be actively maintaining a safe space for BIPOC, LGBTQIA, fat, and disabled folk.
Anne: Your project improves event accessibility and, as you put it, creates a space “where neurodivergent folk could feel seen and take a small breather.” What are your hopes for the future of neuro-inclusive spaces?
Fozzy: My hope is that we can bring Retreat to more events in the future. It would be great if we could also get more people—especially those who run public events—really thinking and paying attention to issues of accessibility for the neurodivergent community. In a perfect world, all large events would automatically ensure that they book the extra space to incorporate a space like Retreat.
As it stands, the biggest barrier is space. Just like with so many issues around accessibility, meeting the needs of the neurodivergent community is still seen as something extra when it should be the default. Our needs aren’t “special,” they’re just different and we have just as much right to enjoy events like conventions and markets as anyone else.
