While many Americans have struggled with rising food prices this year, the pressures are even more intense for disabled people who have to balance additional constraints—and whose needs are sometimes more expensive, and more complex, than those of the general population.

Complicating matters for disabled people are ever-present systemic realities. Almost 27 percent of disabled people live in poverty, nearly twice the rate of the general population, and that high poverty rate drives a high rate of food insecurity. Even in the best of times, disabled people are struggling to feed themselves.

Additionally, the end of the public health emergency associated with COVID triggered a series of catastrophic changes to benefits programs affecting members of the disabled community. Many relied on the pandemic-era increase in Supplemental Nutrition Assistance Program (SNAP) benefits to access the food they needed. The expiration of those increases in March has put many in a tough spot, causing individuals to lose at least $95 per month in benefits, as much as $250 per month for some households.

In addition, the certification requirements for Medicaid have resumed, which may lead to loss of coverage for as many as 14 million Americans. At a time when more and more people are living with long COVID, there have also been changes to funding for free COVID testing, vaccination, and treatment.

The brief period of increased benefits was revolutionary for some disabled people, notes Bonnielin Swenor, founder and director of the Johns Hopkins Disability Health Research Center. Like other pandemic programs in the process of a wind down, the drop in SNAP benefits is coming at the worst possible moment for disabled people as inflation increases the cost of living.

Expense of Dietary Constraints

Diabetics rely on their diets to help them manage their blood sugar, for instance. And while people with postural orthostatic hypotension may need a high-salt diet, those with kidney disease require reduced salt.

Allergies in particular can have a profound impact on what people are able to purchase; even with more allergy-friendly items on shelves, people who need to avoid tree nuts, peanuts, dairy, eggs, shellfish, and other common allergens are sometimes forced to seek out more expensive options. Similarly, shoppers with gluten or soy sensitivity can find their choices severely limited.

Dietary restrictions can contribute to the “disability tax,” or the higher cost of living associated with being disabled.

“A thing people don’t realize about food intolerances is not just how expensive the special foods are, but how expensive it is to find new foods,” says Liz Moore, a disabled person with Mast Cell Activation Syndrome (MCAS) who lives with family in the D.C. area. Their condition means that even small changes not just in food but even in the glue, ink, or paper used in packaging can trigger a flareup, sending them into a spiral as they try to figure out what is making them sick.

Sensory sensitivities are also an issue for some disabled people. Cancer patients on chemotherapy and people with long COVID may struggle with the smell and texture of foods. Some neurodiverse people also have sensory sensitivities that can be extreme, and also highly variable. That can mean going to the grocery store and later throwing food out or giving it away after discovering that the smell, taste, or texture is suddenly unbearable. When there are no “safe” foods, going shopping can turn into a very expensive guessing game with big stakes.

“We put together the list and go through it a second time to make sure we aren’t getting frivolous things,” says Alicia Lee, a disabled woman who is a caregiver to her disabled teenager in a home that also includes her disabled adult son and mother, who has a visual impairment. Her husband is the only person currently working, and their “house of disability” requires constant adjustments to meet fluctuating dietary needs.

Lee speaks of the need to “pinch pennies” in a low-income household even before recent cuts to SNAP and disruptions to her ability to run her small business making custom bags, caused by long COVID and complications of her other disabilities. During the worst of the supply chain problems, Lee couldn’t even go to the store, because she would have a panic attack at the sight of empty shelving, thanks to growing up poor. She’s not alone: One in three caregivers are disabled themselves, and their benefits often end up needing to stretch further than their personal needs.

Navigating the Restrictions of Benefits Programs

“It’s been very much viewed as this charity model,” says Swenor of the Johns Hopkins Disability Health Research Center of the limited benefits disabled Americans receive. “[We need] to shift the paradigm a little bit, to an empowerment model.”

Swenor’s suggestion reflects a larger shift in thinking away from a century-old approach that treats disabled people as figures of pity who need to be helped to one that positions them as individuals with autonomy.

The disability community is accustomed to the experience of feeling patronized by programs and agencies that are ostensibly there to help; the myriad complicated restrictions associated with SNAP are an excellent example, says Swenor.

“Within SNAP specifically, there’s many other problems including how benefits are determined, who’s called disabled, who’s within the program, work requirements. . . . There’s a just a cumbersome process beyond the accessibility to enroll in SNAP that does keep people out,” she says.

Those who can navigate the application process and meet income and asset requirements are provided with an average of $6 a day to spend on food, a benefit based on the USDA’s “Thrifty Food Plan,” a hypothetical food budget that is in practice extremely difficult to live on. With the expiration of pandemic emergency allotments, two people receive a maximum benefit of $516 per month, while a family of four can receive a maximum of $939. In practice, beneficiaries rarely receive the maximum amount, thanks to the labyrinthine calculations that go into SNAP. Those benefits also come with strings attached.

People cannot use SNAP for hot prepared meals, for example, which can be an issue for those who struggle to cook on their own, or who want to take advantage of highly flexible foods such as rotisserie chickens, which can be stretched, repurposed, and reimagined for several days. Meanwhile, SNAP’s online shopping pilot does not include delivery costs.

The Special Supplemental Nutrition Program for Women, Infants, Children (WIC) has even more restrictive rules that turn shopping into a complex calculus for beneficiaries. Only certain foods in certain packaging are eligible for WIC coverage. While stores often have tags on the shelves identifying those foods, people trying to cross-reference for allergies and other dietary needs may find themselves with very limited options.

Beyond Cost: The Shopping Experience

Swenor hopes to see a conversation about accessibility in food join the growing discussion of food apartheid. Inaccessibility throughout the food system interacts with the ability to obtain nourishing and appropriate foods and requires complex fixes.

For example, disabled people reliant on public transit or paratransit may have a hard time getting to and from the store, and while basic accessibility has been legally required since the Americans with Disabilities Act of 1990, some grocery stores remain inaccessible to many.

This includes functional problems such as “just one step” doorways, narrow aisles cluttered with items that make it hard to get through with a wheelchair or scooter, and accessible restroom stalls that are used as temporary storage. These are just some of the barriers that Liz Moore says make it challenging to shop across multiple stores for affordable deals.

“I try to avoid eating things where I know the labor practices are appalling,” added Moore, who says maintaining that standard is even more challenging for people who have limited purchasing power paired with restrictions on what they can safely eat. Still, for some disabled shoppers, it’s part of their values.

Challenges of Seeking Pantry Assistance

While these entities aim to serve hungry members of their communities, when it comes to disability, their efforts sometimes fall short in ways that can be challenging to correct.

Cross-contact, where allergens are stored with or near theoretically safe foods, is one issue, especially in facilities that receive bulk orders of dry goods and repackage them on site. A bag of beans, for example, may have been packaged in the same area as nuts or wheat flour, making it potentially unsafe for people with allergies to those foods. Some facilities are growing sensitive to this issue, however.

The Food Equality Initiative offers direct services to clients in Missouri and Kansas who need access to medically indicated diets. “Locally, food banks will have a clean room [at least prior to COVID],” an isolated room where sensitive products such as gluten-free flour can be packaged, says Erin Martinez, the organization’s CEO. “It’s in the clean rooms where they can divide up bulk items.” The organization has pushed for these allergen-friendly spaces, which have not caught on nationally—yet.

These kinds of measures can be low-hanging fruit for increasing the accessibility of the food supply, especially if a food bank has a room that can be easily used for or converted to this purpose, says Swenor.

Even when food banks are being extremely careful, some disabled people are still wary, worrying that products may make them ill. Peanut oil may pop up in an item where it didn’t used to be, for example, or soy might be used as a filler to increase the amount of protein, and inattentive food pantry staff or volunteers might not realize that an item is no longer safe.

Promising Solutions

Universal basic income pilots have also shown promise for reducing food insecurity, providing participants with the flexibility to decide how and where they want to spend money, rather than limiting them to the requirements of specific benefits programs.

The 2023 Farm Bill will be a battleground for food assistance for both disabled people and low-income people more broadly, with Republican lawmakers already pushing cuts to SNAP and other safety net programs. But funding allocations through the farm bill could also direct money to projects such as Martinez’ Food Equality Initiative, which ran a successful pandemic pilot that allowed clients around the country to order food online.

It also offers a key opportunity to set policy priorities that raise larger questions about how the U.S. wants to address agriculture, food security issues, and the integrity of the food system.

Still, the 2023 Farm Bill will have to reckon with a big problem, says Swenor: “To count, you have to be counted.” Detailed, real-time data is not available, she says, making it hard to track responsiveness to policy interventions, and survey data can offer an incomplete picture of the disability community. Tackling hunger in the disability community, she says, first requires thinking its members are worthy of being included in data collection.

Alicia Lee, like many disabled people, is hesitant to accept help, and may slip between the cracks of data collection that could help agencies and lawmakers develop more effective policy interventions. “Give folks the money and let them decide,” she says, speaking to the bureaucratic nightmare that is applying for benefits and offering advice for reforming the system.

She is also concerned about the welfare of those she feels having an even more difficult time. “Since we are struggling but not desperate,” says Lee, “I would feel no small amount of guilt for taking anything someone else in a worse situation might need more.”