Imagine the following scenario: you’re sitting in a bustling coffee shop on a warm spring day when a brawny man walks in smiling and holding hands with his young daughter. Suddenly, his free arm begins to twitch, and he utters a loud sound and a couple of swear words. You immediately notice some of the customers turn to stare and you can read the looks of confusion, shock, or judgment on their faces. This exact scene played out when I Can for Kids (iCAN) arranged a conversation with a father who accesses our grocery gift card program.
What most of the customers didn’t realize is that they were witnessing a very common experience for individuals who live with the neurological condition Tourette Syndrome (TS) and its rare symptom coprolalia (the involuntary use of explicit language). TS shows up as a wide range of uncontrollable physical movements and verbal sounds known as tics. While most of us can imagine how challenging life would be with TS, few people know that individuals and families living with disabilities often endure an equally difficult but lesser-known struggle: food insecurity.
Recent research shows that households with adults who have disabilities experience higher rates of severe food insecurity. Approximately 40% of the families who access support from iCAN are raising a child with a cognitive or neurological condition, such as TS, attention deficit disorder, or autism spectrum disorder. In this blog post, we recap the key points from an eye-opening, two-and-a-half-hour conversation with a dedicated, stay-at-home dad named Joe (a pseudonym) who’s navigated an exceptional life journey with both TS and food insecurity.
The Hurdle of Stigma
Both food insecurity and the unintentional tics of TS can lead to heart-wrenching experiences of intense social stigma. Individuals and families living with a more severe level of TS often experience significant financial struggles due to major limitations on employment options and increased expenses for a whole battery of treatments and therapies. This means people with TS and other disabilities are much more likely to face the difficult choice between spending money on essential care or putting food on the table.
As a younger adult, Joe held down a variety of jobs where he could make great use of his curious intellect and diverse skills. However, by his mid-30s he was no longer able to manage his physical twitches and verbal outbursts as effectively, and he was forced to transition to a much lower income on basic disability benefits that didn’t cover all his family’s essential needs. “When you work for someone, you’re representing their brand,” he stated, “and no one wants someone like me to work for their company because it’s just too risky for them. Staff and customers just don’t understand. It’s super frustrating because I know I’m a good worker.”
Joe’s spontaneous movements and sounds also attract a lot of unwanted attention and he explained why his situation is particularly difficult. “We can measure how intrusive tics are with a tool called the Yale Global Tic Severity Scale,” he explained, “and I rank really, really high.” In fact, he faced an unsettling confrontation at a local food program when another client responded aggressively to his involuntary swearing and physical tics. “It’s hard enough walking into these places to ask for help while your toddler is waiting in the car”, he shared, ‘but then I also have to deal with hostile reactions from other people who are already so stressed out about life.”
The Element of Choice
Joe tried to access different food programs, but soon realized how much he would struggle to stay on top of his diet, such as managing his sensitivity to soy ingredients. He also had very little control over the quality and types of foods he could offer to his vibrant three-year-old daughter. “As a parent, you really want to set up the absolute best blueprint that you can for your children.” he emphasized, “I’m at home with her all day and I take my job very seriously, so I want to make sure I show and teach her how to get the most out of life by taking care of her body and her health. I just don’t want to feed her sugary foods and processed stuff that sets her up for years of bad habits.”
With access to iCAN grocery gift cards, Joe has been able to take charge of his family’s unique diet needs. He likes using the cards to take advantage of major sales at the grocery store within walking distance from his home. He’s also used a gift card to plan a fun yet educational outing to the zoo with his daughter. “It was so great to be able to take her into the grocery store and make it a game to plan out a healthy picnic lunch since I knew food would be so expensive once we got to the zoo.” Joe recounted with a chuckle.
The Benefit of Dignity
After a year of escalating inflation and rising food costs, Joe reached out to iCAN for support in early 2023. We connected him to one of our amazing agency partners whose services and approach work well for him. With a lot of emotion in his friendly voice, he described how “when you’re a husband and a dad, you just have this powerful instinct to do everything you can to provide for your family, no matter how hard it is.” Joe’s wife currently works part time so she can help him stick to health recommendations, keep a regular schedule, and follow specific regimens that maximize his ability to manage TS and its symptoms. Our agency partner also encouraged Joe to join one of their dad’s groups and he is now on their waitlist to access other helpful supports.
Joe was particularly grateful for the level of dignity he experiences with our grocery gift card program. “I can’t say enough how much of a difference it makes when I can go shop in the store where people know me and understand my tics. It takes away so much pressure.” he explained, “And I also get to create good memories of being a helpful dad for a daughter who could one day face her own social struggles around my condition. Most people just can’t understand how important this is when you live with Tourette Syndrome.”
iCAN can’t thank Joe and his daughter enough for taking the time to share their story. In a society that often makes harsh assumptions and judgments about human struggles, it takes a lot of vulnerability to be as open and honest as Joe was during our conversation. Even though we all know that better income policies are the best way to help him and other food-insecure families living with disabilities, it’s encouraging to know that for the time being, our program – and your donations – make a difference that goes way beyond healthy food.
To join iCAN’s expanding list of champions, check out the ways you can get involved or donate.
To learn more about I Can for Kids and their unique approach to childhood food insecurity, visit www.icanforkids.ca
About Donald Barker
Donald Barker has worked as a registered dietitian for more than 25 years. He also has a professional background in communications and has long advocated for populations who face adverse, unjust, or systemic barriers that lead to higher rates of poor social, mental, emotional, and physical health outcomes. Donald currently volunteers as an Advisor with iCAN to support our transition towards evidence-based approaches that help improve the well-being of children in Calgary who live in low-income and food-insecure households.
About I Can for Kids Foundation
I Can for Kids works closely with multiple agency partners to target and distribute grocery gift cards to food-insecure families who are most in need. The iCAN grocery gift card program is a more dignified and inclusive approach to dealing with food insecurity, allowing families to shop where everyone else shops and to choose foods that are appropriate for their health and cultural needs. Explore their website to discover more about iCAN’s impact over the years.
For more information and media inquiries, please contact iCAN Executive Director, Bobbi Turko at bobbi@icanforkids.ca.
