By default, lack of access to food signals that some people don’t belong or are not as valuable as others and also has seriously harmful health implications for those communities—particularly for people with disabilities. The world is designed for able-bodied people; existing systems cater to people with the time, money, resources, and physical ability to grocery shop and cook at home. That often makes eating more difficult for people with disabilities, who are more at risk for other health issues because of lack of access to good, nutritious food.
- Elaine Gerber, PhD, Elaine Gerber, PhD, is a disabilities scholar and the associate professor of anthropology at Montclair University.
- Marsha Saxton, PhD, Marsha Saxton, PhD, is the director of research and training at World Institute on Disability (WID) and a lecturer of disability studies at the University of California, Berkeley.
Roadblocks to eating well when you have a disability
There are many kinds of disabilities, and every person living with a disability experiences it differently from others. However, there are some common barriers to cooking and proper nutrition that many within the disabled community face.
For one thing, just the way standard home kitchens are designed can make them inaccessible to many. The average kitchen counter height is 36 inches tall; while it varies for each person, a wheelchair typically has a “lap height” (which falls at the waist) of 27 inches—meaning that a person sitting in a wheelchair would likely have to reach above their shoulders in order to do anything on the countertop, let alone open top cabinets. Additionally, not all kitchen utensils are designed for people living with disabilities. If you’re paralyzed on one side or have limited use of your arm and hands, for example, a traditional knife and cutting board might be incredibly difficult (and potentially risky) to manage one-handed.
Outside of the kitchen, there are larger societal issues that make it harder for many people with disabilities to access food in the first place. Data shows that food insecurity—a lack of consistent access to enough food—is especially severe for people with disabilities. Approximately 33.5 percent of households with an adult who has a disability and is not working experiences food insecurity, along with 24.8 percent of households with adults with other reported disabilities. Meanwhile, just 12 percent of households with no adults age 18-64 with disabilities are considered to be food insecure. In fact, one in five households receiving SNAP benefits (federal nutrition assistance) includes a person with a disability.
Part of this comes down to the reality that people with disabilities are twice as likely to live in poverty than people who don’t have disabilities, and are less likely to be employed—thus severely restricting their ability to buy food in the first place. This is due to a variety of factors, including enduring employment discrimination, lack of accessible transportation, and the strict requirements of federal disability aid, which is revoked if a person has more than $2000 in assets. (None of these stats take into account the pandemic, which has put a massive strain on many families' ability to afford food.)
"I want people to know it's not their fault if they're having these issues with cooking or eating. It's the attitudes and the structures around them." —Elaine Gerber, PhD
Additionally, food deserts—areas where it’s difficult to buy affordable or good-quality fresh food—are a huge issue for people with disabilities, says anthropologist and disabilities studies scholar Elaine Gerber, PhD. For people with disabilities living in food deserts, traveling to shop for food can be even more difficult. (Not everyone has a car, and public transit is notoriously inaccessible to people with disabilities, despite the requirements of the Americans with Disabilities Act.) If you can get transportation to a grocery store, markets are often not set up to accommodate wheelchairs and mobility aids, and for blind people and people with difficulty seeing, there’s little help available reading labels.
Living with a disability also often requires people to use their time and money differently than able-bodied people, and that can pose an additional barrier to healthy eating. If you have a chronic illness, for example, you might not have enough energy to grocery shop or cook, so you end up spending more money on dining out or delivery. If you’re blind and don’t have help on a given day, you might not have the capacity to cook on your own. But one-size-fits-all nutrition advice, with an emphasis on eating “clean,” unprocessed foods, doesn’t necessarily take into account these realities—and people with disabilities are often shamed for it, says Shelby, a 27-year old woman with spinal muscular atrophy.
“People [who advocate for healthy eating] are going to tell you to not eat out as much. But if that's what it takes to eat, do it. People are going to say you should cut certain things out of your diet to be healthier. If that makes it harder for you to eat, don't do it. People will say to use fewer single-use plastics. If that's what it takes to get nutrients into your body, use the pre-cut veggies in the plastic container,” Shelby says.
Negative attitudes and stereotypes about people with disabilities can be a barrier in and of itself, making them blame themselves for not being able to cook and eat like other people, Dr. Gerber says. “I want people to know it's not their fault if they're having these issues with cooking or eating. It's the attitudes and the structures around them.”
Creating solutions in an ableist world
Despite the critical need, the burden has mostly fallen on people with disabilities to figure out their own solutions to accessing food. On top of SNAP benefits, some states offer services that provide meals or help with personal assistant costs for people with disabilities. For example, Shelby's home state of Utah has an Employment-related Personal Assistant Services (EPAS) program through the Department of Health and Human Services, which helps to pay for personal assistants who will cook for her. But that's not the case in all states, leaving many folks to fend for themselves.
Finding strategies for easier eating, like planning ahead and saving food in bulk, are crucial, says Marsha Saxton, PhD, director of research and training at the World Institute on Disability (WID). Even so, that doesn’t cut through the barrier of cost or finding simple recipes that also deliver nutrients and flavor. Around eight years ago, when she saw a need for resources that addressed barriers like these, she started the site Disability Feast, an online “cookbook plus” for people with disabilities. On top of recipes, solutions, and tools sourced from the disabled community on social media, Dr. Saxton and her team put together pages with tip sheets for cooking effectively, and external resources addressing needs for grocery shopping, food preparation, and more to close the knowledge gap for how to feed oneself. None of the recipes involve using tools that are hard to hold or use, or require ingredients that might be already particularly hard to get.
“I encourage able-bodied folks to be more proactive about offering that help to their disabled friends. We're often afraid to trouble others with our needs.” —Maggie, 36
Disability Feast acknowledges just how much cooking and eating can be about community, too. The Eating as a Social Activity section of the site offers tips for people to make their events more accessible for people with disabilities, nutrition tips for caregivers, and resources for starting a cooking club with other people in the community. Other resources online have popped up for people with disabilities to talk and trade advice and ideas for cooking and eating, including a private Facebook group, Crip Cuisine. Accessible Chef is another site that provides visual recipes and resources for people with disabilities, including a Recipe Creator portion of the site where visitors can make their own recipes from certain things they like to eat.
Dr. Gerber has found in her research that many people with disabilities report that having community members, friends, and loved ones come over to help them cook, open jars, or navigate kitchens creates much more opportunity for them to enjoy cooking and eating. “If able-bodied friends or family can help you, they can do what would be dangerous for you while you do what you can,” agrees Grace, a 30-year-old woman with cerebral palsy.
Having a partner she lives with has been crucial to her ability to eat well, says Maggie, a 36-year-old woman with lupus, gastroparesis, and other disabilities. When she was living alone and in a long-distance relationship, she was often helped by people who would take her grocery shopping or make meals with her. “I encourage able-bodied folks to be more proactive about offering that help to their disabled friends,” she says. “We're often afraid to trouble others with our needs.”
For those who have had access to funds to renovate their kitchens, it’s made a world of difference. Marina*, a 30-year-old woman with disabilities, says lowering her countertop and removing all the cabinets below it to have the space to "roll in" with her wheelchair and cook was a huge help, she says, as was putting storage units and shelves close together to have utensils and tools close to make cooking easier and safer.
There are also plenty of adaptive tools created to make cooking and eating easier, like automatic pot and pan stirrers, stabilized utensils for people who experience tremors or mobility issues, safer and easier one-handed cutting boards, braille measuring cups, and more. Still, many of these tools can be expensive or otherwise hard to buy—making finding concrete solutions even more of a case-by-case basis.
Reclaiming the joy of cooking
Although having a disability can be a barrier to cooking and eating, the process can still be joyful. Many people figure out their own hacks to make things work, just like any other home chef.
“Think of ways to make your kitchen practical,” suggests Marina. “I know that I like a spotless counter top. Therefore, I bought a big bread box where I put all snacks so my kitchen remains clean but also, I don't have to put my snacks in a cabinet or storage where I'd need to bend down or stretch up too much. Rolling in a wheelchair does damages to your back and shoulders so you don't want to 'overuse' them" to get [your food],” she says. “Little tricks here and there can help you feel better in your own kitchen and enjoy cooking more.”
For Jason Dorwart, a visiting assistant professor at Oberlin College and Conservatory, who uses a wheelchair and has limited use of his arms, cooking was a big part of his life before he was injured. He cooked in a few different restaurants, and now loves watching Food Network shows to remind him of his love for it. It also reminds him of all the creative problem-solving skills he’s obtained. “I find it endlessly entertaining to watch well-trained and high-achieving chefs get pissed off when they have to deal with impairments that many of us work with on a daily basis. Sometimes I think, ‘I’m a quadriplegic and I would kill it on that show!’” Dorwart says.
While it’s important to acknowledge and find solutions to the ways that the world systemically isolates people with disabilities, it’s also necessary to be intentional about not infantilizing or pitying them. Dr. Saxton emphasizes that talking about people with disabilities as if they’re courageous or amazing for “overcoming” barriers to cooking, eating, or anything in general is demeaning.
Ultimately, it’s the world that has a lot of changing to do in order to make eating well more accessible, and shouldn’t be on people with disabilities alone to find solutions. Food is about community, culture, and belonging. We all need to work to create systems that don't isolate people—no matter who they are.
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