News and commentary about the American food system.
From helping retrofit community gardens to making food pantries more accessible, a small but growing group of advocates and allies want to see a food movement that includes the one-quarter of U.S. adults living with disabilities.
By Dana Ferrante
November 9, 2022
Gerldine Wilson, long-time gardener and leader of Grassroots Gardens of Western New York’s Gardening For All initiative, in the Victory Community Garden she started a decade ago. (Photo credit: Grassroots Gardens WNY)
After her brother was murdered, the only place Gerldine Wilson found healing was her neighborhood community garden in Buffalo, New York—a space she founded a decade ago with help from a group of gardeners and activists called Grassroots Gardens of Western New York (GGWNY).
So when she encountered changes to her mobility, Wilson says, “I had to find a different way to function in my garden. Giving it up wasn’t an option for me, because it was tied not only to my nutritional health, but also to my mental health.”
In the fall of 2018, GGWNY poured a concrete pathway that allowed Wilson, who is legally blind and was using a wheelchair at the time, to continue to navigate the garden. GGWNY’s Executive Director, Jeanette Koncikowski, wasn’t sure the path had been installed correctly, so she asked Western New York Independent Living to conduct a site assessment.
“[We asked,] ‘If we have 30 barriers for Gerldine, and we have 100 gardens, what other barriers are keeping community members from being able to fully participate in our program?’”
The results were a watershed for GGWNY. “They said, ‘Yeah, the concrete pad is fine,’” Koncikowski recalls, “‘but there’s like 30 other problems with this garden and barriers for someone like Gerldine.’ And that was where the seed was planted. [We asked,] ‘If we have 30 barriers for Gerldine, and we have 100 gardens, what other barriers are keeping community members from being able to fully participate in our program?’”
Mirroring society at large, community gardens and their associated programming are often created under the assumption that there is a “normal” or “correct” way for bodies and minds to function. Garden beds and watering equipment are placed at a height inaccessible to those who use a wheelchair or can’t bend over for long periods of time; conventional gardening tools prohibit participation from people with limited hand mobility or who experience chronic pain. Garden signage, community events, and basic online information about how to join an organization often neglect to consider the communication needs of people who are blind, visually impaired, Deaf, hard of hearing, or neurodiverse.
But community gardens are not the only place ableism—a system that places value on people’s bodies and minds based on what society considers “normal,” often manifesting as discrimination against disabled people in favor of non-disabled folks—has taken root in the food system.
Across the U.S., a small but growing number of disabled people, allies, and organizations like GGWNY are calling attention to the undercurrent of ableism in the food justice movement and working to improve the accessibility of everything from community gardens and farms to food assistance programs and food policy. These advocates are pushing for a more inclusive model of food justice—one that actively makes space for and empowers disabled people, who make up around one quarter of adults in the U.S.
Like race, religion, and sex, disability is a federally protected class. Legislation such as the Americans with Disabilities Act (ADA) prohibits discrimination against individuals with disabilities in all areas of public life, including employment and transportation. Compliance, however, is uneven, often placing the burden on disabled people to file a complaint or lawsuit when ADA standards aren’t met. So while some public accommodations, such as grocery stores, may proactively create accessible environments, disabled people face discrimination in all facets of life, including employment, housing, and healthcare—with disabled women, LGBTQI+ people, and BIPOC at heightened risk.
The food justice movement is no exception. In order to address the ableism disabled people currently face, activists say a shift in perspective is vital, especially among the movement’s nondisabled participants.
Wilson checks out pepper plants from a wooden seat attached to a raised bed. In addition to new signage, accessible hand tools, and a garden scoot, resting seats were one of the many modification ideas that resulted from the community taskforce’s survey of GGWNY gardens. (Photo credit: Grassroots Gardens WNY)
“Many food justice organizations implicitly define health as the opposite of disability,” or simply fail to explain what ‘health’ means in the context of their efforts, writes scholar-advocate Natasha Simpson in her 2022 master’s thesis for the University of California, Davis. This approach may unknowingly perpetuate the ableist idea that “healthy” bodies are “normal” bodies, she adds. If the mission of, say, a fresh food mobile market is to prevent diabetes in a community, where does that leave folks already living with diabetes or those who cannot be ‘cured’ by a produce-rich diet?
By applying disability justice—an intersectional framework that recognizes “all bodies [as] unique and essential” and centers the “histories of white supremacy and ableism [as] inextricably entwined”—food justice organizations can avoid vilifying an illness, condition, or certain kinds of bodies, Simpson explains. Instead, organizations can help “[link] communities’ material conditions to structural inequities,” revealing ableism, rather than individual failure, to be at work when disabled people or those who are chronically ill are unable to access nourishing food or local community gardens.
While the need for fundamental, systems-level change may seem daunting, a more inclusive model of food justice is critical, given that the number of disabled people in the U.S. has and will continue to increase, due to factors such as an aging population, a projected increase in chronic illness, and the ongoing COVID-19 pandemic, which likely added 1.2 million disabled people to the U.S. population in 2021.
For many activists, the path toward creating a more inclusive model begins with food access.
Along with income and race/ethnicity, disability is one of the largest factors affecting household food security. About 22 percent of households with a working-age, disabled adult receiving federal or state benefits were food-insecure in 2019, compared to about 8 percent of households without a disabled adult. In turn, adults with lower food security experience higher rates of chronic illness and disability. Structural barriers, such as a lack of accessible housing, exacerbate the issue, with disabled people, particularly people of color, disproportionally impacted by housing discrimination.
This is a reality that New York City-based disabled, Latinx mental health advocate and activist Allilsa Fernandez found difficult to ignore. “Folks that are multiply marginalized were highly impacted [by the early phase of the pandemic],” says Fernandez (who uses she/he/they pronouns), who began advocating for food access for unhoused people after spending time in a domestic violence shelter in 2019. With disabled people comprising more than a third of unhoused people, Fernandez initially focused on the NYC Department of Homelessness Services’ (DHS) lack of accommodation for people with dietary restrictions, medical or otherwise.
The Supplemental Nutrition Assistance Program (SNAP) and Women, Infants and Children program (WIC) have similarly been criticized for their lack of accommodations for disabled people, including those who are unable to prepare foods at home and those with severe allergies and complex dietary needs. For example, SNAP does not provide extra funds for people navigating the higher cost of allergen-free foods and hot, prepared foods aren’t covered; WIC-approved food lists are even stricter and riddled with common allergens.
Moreover, these same social safety net programs intended to address hunger and food insecurity make it nearly impossible to save money due to asset limits (e.g., individual Supplemental Security Income recipients can’t have more than $2,000 in savings), leaving many disabled Americans under-resourced in the event of a crisis. Consequently, disabled adults were two times more likely to face food insecurity in 2020 as a result of the pandemic than their nondisabled counterparts.
In the spring of 2020, Fernandez says the parents they had met in the shelter started calling them. “They said, ‘We’re no longer getting food. . . . We can no longer go to the pantries, because the lines are ridiculous and we have disabilities [that prevent us from standing for long periods].’” Fernandez recalls speaking with one woman undergoing chemotherapy at the time, who weighed the COVID exposure risks of shopping in a crowded supermarket after not receiving enough food from DHS.
“In the past, people have tried to solve [the food access] issue for able-bodied people . . . and then they would add on things for people with disabilities.” Kelly’s Kitchen is starting with the people who have the most issues getting food.
In a letter to DHS they co-wrote with a local legal nonprofit, Fernandez called out this oversight, demanding “increased food assistance to those with disabilities” and “adequate foods for those with dietary restrictions” living in shelters. Simultaneously, Fernandez doubled down on their individual advocacy efforts, making phone calls to connect disabled folks directly to organizations offering grocery and hot meal delivery, while coordinating food pick-ups outside of their residence.
Fernandez says the option to get food delivered removed significant barriers for disabled people early in the pandemic, but those opportunities have dwindled as volunteer and mutual aid efforts have fizzled out. The expansion and formalization of SNAP’s online purchasing pilot could help to fill the gap, they say. Nevertheless, in order to ensure food access—and justice—for disabled people, Fernandez says food distribution efforts need to build access from the start. And other advocates agree.
“In the past, people have tried to solve [the food access] issue for able-bodied people . . . and then they would add on things for people with disabilities,” explains Kelly Timmons of South Carolina-based nonprofit Kelly’s Kitchen. “We’re starting with the people who have the most issues getting food,” says Timmons, who co-founded the nonprofit with her husband Paul.
Kelly’s Kitchen aims to create a national network of disability, independent living, elder services, and other organizations, with the twin goals of connecting rural and urban disabled people to food distribution sites, and ensuring those sites are accountable and accessible to people in the disability community. Working with food banks and pantries, they hope to spotlight the “issues of basic access, communication, transportation, physical adaptability, and food allergies” that most food banks and pantries don’t consider, explains Paul Timmons, while helping organizations already addressing accessibility concerns to connect with others. Their aim is to create a “food security net,” or online database that will help users assess whether a distribution site is accessible to them.
Many food assistance sites present the same—if not additional—barriers that disabled people encounter at the grocery store. After finding accessible transport to the site, mobility aid users could find themselves at a pantry located down a flight of stairs or with tall utility shelves inaccessible to wheelchair users or those with chronic pain. Food banks may be unable or unwilling to accommodate allergies or medically necessary diets. People who are blind, have low vision, or are neurodiverse may not always find accessible signage, or someone willing to help interpret food labels.
While the Timmonses say it will take them at least three years to develop their database, they have already made connections in about a dozen states. A former ADAPT activist and disability advocate for almost three decades, Paul Timmons, whose mobility is limited, is no stranger to building a grassroots network. In 1997, he founded Portlight Strategies, a nonprofit dedicated to inclusive disaster planning and post-disaster relief for disabled people. At baseline, he says, cultivating access begins by treating disabled people with dignity.
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Four years since the garden assessment, GGWNY is now one of a handful of organizations modeling how community gardens can empower disabled people and work towards a more accessible and inclusive model of food justice.
In the spring of 2019, GGWNY launched the Gardening for All initiative, a community taskforce led by Wilson that spent a year evaluating the accessibility of the nonprofit’s garden network. Critically, disabled gardeners on the task-force were compensated for their time, expertise, and emotional labor. The group partnered with local disability organizations and conducted a community survey to better understand the needs of community members of all abilities. In early 2020, GGWNY began modifying seven select gardens; they installed wheelchair mats, lights, seating nearby and connected to raised beds, and signage with QR codes (for people who use screen readers), and purchased accessible hand tools and garden scoots. They also created a long-term plan for enabling universal access in all their plots and committed to offering American Sign Language (ASL) interpretation at all public meetings.
Grass mats, like the one installed this summer at the Victory Community Garden, enable people using wheelchairs, walkers, canes, or baby strollers to navigate between plots. (Photo credit: Grassroots Gardens WNY)
“We didn’t just jump into the work,” says GGWNY director Koncikowski. “It was important for us to take a step back and say, ‘Okay, we’ve not done well in this area, let’s hear from the community about what better is.’”
But initiatives like GGWNY’s are still few and far between, advocates say, with most disabled and neurodivergent individuals, especially those of color, facing added barriers in accessing green spaces such as parks, gardens, and farms compared to nondisabled people.
Faced with the high cost of community garden plots and lack of public green spaces in her Brooklyn neighborhood, Latinx occupational therapist and disability justice advocate Kristie Cabrera says she quietly began gardening on her roof in 2019. “I realized [gardening] wasn’t accessible for me as a person with complications, but also for other New Yorkers who had disabilities,” says Cabrera, who is neurodivergent. In 2020, she began documenting how other disabled and neurodiverse people connect with nature in her blog series, Growing Food in This Body.
An accessibility and inclusivity consultant, Cabrera hosts workshops for farmers, gardeners, and others that delve into disability justice and empower attendees to consider accessibility in all aspects of their programming. This could entail thinking through alternative modes of completing farm tasks, purchasing ergonomic or adaptive gardening tools, building spaces and time for rest, learning and applying basic web accessibility principles when doing outreach, and asking CSA members about their accessibility needs upfront. Currently, Cabrera is working with Rock Steady Farm in New York to identify how they can leverage photos on their website to show—rather than tell—potential farm visitors, such as workshop attendees, about the accessibility of their space.
Cabrera is also a program manager for Culikid, a New York City-based nonprofit that offers cooking classes for disabled and neurodiverse children. In this role, she designs classes that are accessible for each student; she may develop different phrases and techniques to explain what sensory cues one can use to check if food is done cooking, or identify alternatives to knives to better serve students with limited bilateral hand coordination.
Her ultimate goal, however, is to work with other disabled and neurodiverse people to establish an “accessible, educational farm” a few hours outside of New York City. The farm would provide a safe space for disabled and neurodiverse BIPOC to “grow food, connect and learn from nature, share their ancestral land stewardship knowledge, and build community with one another,” as Cabrera writes on her website.
“The intersection of disability and food justice is still a very niche field, but it’s blossoming. You have to put two and two together and make the opportunity, even if there is no model.”
Growing spaces created by and for disabled people are critical to fostering a more inclusive food justice movement, says Michigan-based activist Ava HaberkornHalm, whose own mobility is limited. Many universally designed gardening spaces—i.e., created in such a way that any person, regardless of size, age, ability, or disability, can access, understand, and use it—can be discriminatory and segregated, she adds. They often paint disabled gardeners as “inspirations” or recipients of charity, rather than active participants in the food system.
In 2013, HaberkornHalm had the chance to establish a gardening program rooted in dignity at the Ann Arbor Center for Independent Living (CIL). With 12 wheelchair-accessible beds already built, HaberkornHalm created an inclusive program that taught not only “gardening and food justice skills, but also disability pride and solidarity.”
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“In our group, we had a gardener, she was 40 or 50 and had a cognitive disability,” recounted HaberkornHalm during a virtual roundtable in 2021. “Every time she tried to start a project, an able-bodied person eventually would take it over.” But when the woman got a garden plot, explained HaberkornHalm, “It was the first time she was not only able to grow her own food, [but also] afforded the dignity of failure.”
HaberkornHalm later created a network for people interested in incorporating disability justice principles into their gardening programs; it has since attracted a couple hundred followers and has helped HaberkornHalm find like-minded activists across the U.S. “The intersection of disability and food justice is still a very niche field,” says HaberkornHalm, “but it’s blossoming. You have to put two and two together and make the opportunity, even if there is no model.”
Though the gardening program was short-lived, HaberkornHalm has continued to consult on accessible garden design across Michigan, and in late 2021, successfully petitioned her local food policy council to add a disability justice chair—a position she hopes to run for in early 2023.
For someone who “loves being in the dirt,” HaberkornHalm says the council’s hybrid meetings have been an important way for her to stay engaged with food justice work as she has waited—since 2018—to be approved for a wheelchair. With her wheelchair now secured, HaberkornHalm looks forward to visiting the CIL garden, noting she will experience the garden from a new vantage point. “There is something to be said for knowing that in accessible or universally designed places, any way that my body shows up is okay.”
Dana Ferrante is a Massachusetts-based journalist and food studies scholar completing her Master’s degree in Gastronomy at Boston University. Currently, she is conducting ethnographic research that explores disability identity in relation to cooking and eating. Read more >
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