What’s in a name? Your Special Chef is now Accessible Chef
What kind of words should we use to talk about intellectual disability? Cognitive impairment, differently-abled, handicapped, special needs?
While the language that we use to describe disability matters, acceptable terminology depends on the decade and whom you ask. Varying preferences for person-first or identity-first language demonstrate that even within the disability community, there is no consensus on which terms are most appropriate. And what does having a disability even mean? Is it part of your identity and something to be proud of? Is it created by the environment around you or is it an inherent trait? Do you celebrate your disability or is it a medical condition to be fixed?
Given these disparate perspectives, here’s some sage advice: “When in doubt, call a person with a disability by their name.”
On the other hand, most people agree that disability varies throughout life and is affected by external elements like access to education, assistive technologies, and employment opportunities. People with disabilities also share some common challenges. In the United States, people with disabilities are much more likely to live in poverty and to encounter food insecurity than people without disabilities.
Having a disability can affect how you access food, how you cook, and whether and what you eat. People with disabilities may experience food aversion, sensory-based avoidance of food, or mealtime anxiety. They may depend on others to shop for or prepare their food, or they may have dietary restrictions that limit the variety of foods available to them.
When my brother Sam was a young child, he ate exactly three foods: Eggo cinnamon toast waffles, scrambled eggs, and grilled cheese. As he transitioned from half-day to full-day kindergarten, my mom puzzled over which of the three she could pack in his lunchbox. Thankfully, the day before school started, he requested his very first PB&J sandwich.
Sam’s diet remained extremely limited for the next decade. Nightly family dinners were sometimes stressful, and planning around his diet influenced the restaurants we frequented and how we traveled. We kept drinking straws in our car in case restaurants didn’t have them, and my mom felt remorseful that he didn’t enjoy his own birthday cake. My parents didn’t want to force Sam to eat, but they also worried about his nutrition. He rejected foods that were too crunchy, too wet, too hot, too gooey, or too spicy. We dutifully filled his dinner plate every night, and more often than not, he threw his food across the table or on the floor. For years, our daily mantra was, “Leave your food on your plate!”
Slowly but surely, he stopped throwing food and our appeal became, “Just try one bite!”
And a few years later, “Don’t spit it out!”
Expanding Sam’s diet required years of patience from everyone involved, but cooking and eating are now some of his favorite activities. He volunteers to cook school lunches, participates in a community kitchen, and enjoys choosing his own food at restaurants. He loves family road trips in part because he gets to try new foods
A few months ago, he jokingly ordered “passwordfish” at a Japanese restaurant, and I’m amazed that fifteen years ago, my family requested a grilled cheese delivery from Disney World’s disability services so that we could eat at Epcot’s Teppan Edo restaurant.
Sam’s relationship with food highlights how learning to enjoy cooking and eating can enhance autonomy and self-determination in people with disabilities, and this experience prompted me to create Your Special Chef. I conceived of the site in 2008 as a sophomore in high school. I photographed the cooking process with a digital camera because I didn’t have a cellphone, let alone a smartphone, and first-generation iPads wouldn’t be released for another two years. I imagined that teachers would access the site on a desktop computer and print recipes to use in the classroom. I certainly didn’t imagine that ten years later, Your Special Chef would still exist, that I would still be in school (twenty years straight and counting!), or that students would be accessing the recipes themselves on tablets and smartphones.
Over the last ten years, the language that we use to describe intellectual disability has also evolved. I named Your Special Chef in reference to phrases like special needs, Special Olympics, and special education, reflecting my position that people with disabilities are unique and valuable. However, I’ve received feedback that some teachers don’t allow their students to access the site directly because the name implies that they have special needs.
Recent advocacy efforts have focused on emphasizing that people with disabilities have human needs, like security, education, acceptance, and love. Some people believe that the term “special needs” can promote “othering” or “exceptionalizing,” meaning that people with disabilities are further excluded or marginalized. Instead of regretting my lack of prescience, I’ve decided to change the name of Your Special Chef to something that I feel expresses our ongoing goal to make cooking accessible to everyone, regardless of ability. I hope that renaming the site will remove an unnecessary barrier by allowing people with disabilities to access the recipes directly. However, our continuing aim to provide visual recipes and other resources to teach cooking skills to people with disabilities remains unchanged. Welcome to Accessible Chef!
People with Down syndrome don’t need to eat dinosaur eggs. #NotSpecialNeeds