Stars are footnotes and appear at the end of the post.
Greetings from Maryland, where I am safely ensconced and riding out our strange new reality. I miss my partner, in New York, and my family, but I am okay. I hope you are managing and keeping safe.
With the ongoing crisis, I have been thinking a lot about differential access to food, and how it plays out in a pandemic situation for folks with different experiences, often marginalized ones. There are authors who have already written very eloquently about these effects from the point of view of class, race, and gender – and I strongly suggest you read these pieces too! I want to talk, today, about how these access points can play out for people with disabilities.* Specifically, I will talk about the acts of getting, storing, and making food to eat in this context.
When I wrote my piece about disability in the kitchen, the blog’s most-read article to date, I did not foresee that we would be dealing, two years later, with a global pandemic. At the time, I was working on accessible communications for a government agency; now, I am doing graduate work in urban planning, focusing on aging and disability in the built environment. Even the way I talk about my own autism has changed. And, as I research topics from public restrooms to sidewalks, I keep returning to that piece I wrote about disability in the kitchen. Now, when I watch all of our food habits change in line with the virus, enabled by technical innovations, I note that people with disabilities still face barriers to coronavirus cooking. These barriers come right alongside the threats to disabled people’s lives from rationed care, the lack of access to many remote services on which disabled people rely, and the housing problems many disabled people face.
We should remember that disability intersects with other marginalized identities. Disabled people of color face particular and often more intense barriers to access, and often lack access to services more than their white counterparts. This lack extends to access to food – be it living in food deserts or not having an accessible grocery store nearby. Gender, too, plays a role: women, non-binary people, and transgender people often also have difficulty accessing services. And class plays an overarching role. People with disabilities are far more likely to be poor and to rely on inadequate “safety nets”; many people cannot afford food during a normal time. So now, many of the interventions well-off abled people take for granted – grocery delivery, food delivery, or being able to purchase two weeks’ of food at once – are more difficult or impossible for many disabled people. Not to mention that inadequate housing and kitchens particularly affect poor disabled people – especially people of color with disabilities.** People incarcerated in “group homes”often have no autonomy over their food at all (or anything else). The inability during a “normal” time to afford a house with accessible food storage or appliances is doubly problematic when there is no accessible way to store, cook, or save large quantities of food.
But these problems start even before we get to putting food away. Let’s walk through the process of going to a grocery store, buying food, bringing it home, storing it, and cooking it in this time.
Barriers start with the simple act of getting to the grocery store, or getting groceries delivered. Of course, some people with disabilities cannot safely leave their homes during the pandemic, and that situation itself is an enormous barrier. Many people with disabilities, including those who can leave, rely on public transit or paratransit to go to “essential services” like supermarkets, and routes and service have been gutted in many areas. As a result, what was a one-hour trip might now take three. Sidewalks, already badly maintained and narrow, are difficult to practice social distancing on – especially if you cannot wheel on dirt or safely on a busy street! Many grocery stores that are open have visitors line up on inaccessible barriers for entry, or are located in difficult-to-navigate and often dangerous areas. These challenges are added to on the return trip with the difficulty of carting food while achieving any of these tasks. Food delivery can cost more money that many disabled people do not have, and not to mention, anecdotes indicate that some things do not seem to make it into delivery baskets right now. Furthermore, many delivery services’ communications are inaccessible, be it badly-designed websites or demanding telephone calls some people cannot make. So, many people with disabilities rely on friends or family to assist with groceries – but this relies coordination, and often gives other people undue power over what that disabled person is eating. The “well-meaning” (but actually inappropriately controlling) family member might not, for example, get those sour cream ranch chips that make lockdown that much more bearable for their relative.
Other barriers exist once you enter a grocery store or supermarket. Of course, many grocery stores are inaccessible, with narrow aisles and steps, loud equipment that triggers sensory reactions, and broadly impossible to navigate for blind people. Coronavirus adds another layer: the need to socially distance means that you move a lot, but some people move more slowly than others. Standing in line for an hour, as occurs in many places, is not possible for some people. Social distancing is more difficult or impossible for people with cognitive disabilities, especially given the type of mental processing such distancing requires. On top of food shopping, that can become very difficult without cues in the store. The worry about viral spread, often dismissed for grocery stores, is quite real for immunocompromised people. Masks make it harder for Deaf and hard of hearing people to communicate with store staff and other shoppers, because facial expressions and lip-reading become impossilbe. And, of course, shortages play a role too. If you, like many disabled people, have food sensitivities or allergens, and your mainstay foods are out of stock, you may find shopping more difficult. Not to mention that markups on common food items may make them unaffordable to many people with disabilities.
Once someone returns, or has food delivered, how do they store it? Refrigerators and freezers are often inaccessible for people with disabilities – especially wheelchair users and people of short stature. Food packaging is usually inaccessible to blind and low-vision people, who often have to relabel all of their food once it comes back into the house. With the larger grocery hauls that result from less frequent trips away from home, this task becomes longer, and more tiring. In addition, cabinets, especially those meant for food storage, are also often not accessible for wheelchair users. When one is limited to a certain amount of space, storing two weeks’ worth of food can be an insurmountable challenge, as a result of poor, inaccessible design. (Even a design that is pretty: if it is not accessible, the design probably is not good.) Many disabled people live in housing that already was inadequate for food preparation and storage. Furthermore, for many people with cognitive disabilities, the challenge of sorting and storing food,*** already present before the pandemic, becomes even more taxing with the new amounts of food and the different rations required during the pandemic. And, of course, let us not forget that people with suppressed immune systems are at higher risk of contracting coronavirus from packaging, if it is transmitted this way, with far worse results.
Then, of course, there are challenges familiar and new about planning and cooking meals. All of the usual barriers impeding disabled people’s freedom in the kitchen are still there: unusable counters, dangerous stoves, inaccessible sinks, and so on. But the necessitated reliance on cooking makes it that much harder if things get messed up – something that also matters for recipients of food assistance. In addition, planning meals can be a difficult task – and planning them for as much as two weeks is often extremely difficult for people with cognitive disabilities. Furthermore, many of the pre-prepared ingredients that make cooking more manageable for people with disabilities – pre-cut vegetables, canned fruit, and little herb sachets among them – are in short supply at many groceries. Some disabled people may not be able to, say, safely chop an onion in their kitchen.
For many disabled people, this paradigm is particularly exhausting. Some disabled people already work with lower levels of energy or higher fatigue than other people. Most disabled people have to do the honestly tiring work of figuring out how to move around barriers, to navigate inaccessible spaces, and still get what they need. In the age of coronavirus, that can be especially tiring. And so the added fatigue, the accumulated tiredness, the “lack of spoons,” becomes yet another barrier for food access. Even – especially for people who cannot leave their homes right now. The worry and the coordination of food access alone can be exhausting – on top of which, all these other issues may apply.
You may notice, when reading, that many of these issues are not specifically about coronavirus itself. Of course not – the built environment that harms disabled people was already there before the pandemic: access to food sources was still blocked, transport was still an issue, kitchens were inadequate, cooking was difficult, fatigue still occurred. The point is not that these barriers to food and cooking are new for people with disabilities. The point is that the coronavirus crisis amplifies them, to a point of being even more impactful and dangerous.
I wonder, from a personal and professional perspective, how we can address these issues in a post-pandemic world. What sort of transport structures and changes will we need to put in place to consider food access and service access for people with disabilities? What changes need to be given additional oomph? What new requirements will supermarkets, grocery stores, housing, and other services need to meet during construction? Some of these standards already exist, but some will be changed. After all, disabled people, too, will be making changes to their lifestyles after the pandemic – and that choice will necessitate some new design standards, be they wider supermarket aisles or more food storage space than before in an accessible kitchen. These are all to be determined, and hopefully, will improve upon the current paradigm, which is unacceptably inaccessible.
*A note to readers: I tend to be ecumenical about using “person-first language” – people with disabilities – and identity first language – “disabled people,” though I tend to prefer the latter since it points out that people are disabled by the societies around them. This idea is called the social model of disability. As an autistic person, I find myself switching when I even describe myself. That said, I know many people with disabilities prefer person-first language, and as a compromise, I switch between the two now. For certain disability communities, there are proper protocols: The descriptor Deaf people is always identity-first in English, the descriptor people with cognitive disabilities is always person-first in English. These rules are based on community decisions. Please do not use “differently-abled,” as it implies that there is something wrong with being disabled!
**The first folks to be listened to on issues affecting disabled people of color are disabled people of color themselves. For a clear explanation as to why, and the intersection of race and disability, see this fantastic piece by Imani Barbarin. Ditto for issues affecting women with disabilities, disabled transgender people, and working-class disabled people. I should not be your primary source here!
***Resources by and for people with cognitive disabilities often expressly discuss pantry storage and food purchasing. However, many assume regular grocery access – which may not be possible during the pandemic.