What Does Disability Have To Do With Cooking?

So last week in the United States, our current president came out with one of his most bizarre – and meanest – ideas. Apparently, he wanted to replace half of the cash-like benefits received by those on the Supplemental Nutrition Assistance Program (“SNAP” or “food stamps”) with a box containing pre-selected packaged goods. These goods would include cereal, pasta, and shelf-stable milk. It was humiliating, infantilizing, and inconsiderate in one fell swoop. It also ignored the fact that poor folks have their own food habits and needs, as well as the fact that people cook different things – or sometimes do not have the ability to cook for a variety of situational or disability-related reasons. Some are now saying that this whole thing was an elaborate “troll.” Given the reaction of the Secretary of Agriculture, Sonny Perdue, though, I am deeply skeptical of that claim.

In any case, I was rather upset, and drafted a 36-tweet rant going through how this plan was both icky and disastrous for the reasons I mentioned above. You can read the rant here, and the piece that followed in Jewish Currents here. Anyway, my thread proceeded to become “viral,” and received many thousands of views and hundreds of “shares” and “likes.” And, of course, I got questions. Some people asked me about universal basic income (a great idea but people need to eat tomorrow and today), comparisons with Australian policies (utterly fascinating), and how this is already a sad policy on Native reservations. I answered the questions that seemed honest, and not lines of attack. Unfortunately, people believe many myths about food stamp recipients. I had to dispel many of those.

And then there were questions about disability. These I should have expected from those who knew me. After all, disability access is a big chunk of my day job, where I make sure local government written and digital resources are usable by everybody. I am passionate about that part of my job, and tend to evangelize disability access wherever I go. And so I had addressed questions of disability in my rant, bringing up the fact that kitchens are often inaccessible, and that people with cognitive disabilities often do not learn how to cook, among other things.

Responses from those I did not know before were filled with information. Some told me anecdotes of how they needed to buy frozen or ready-made food on SNAP, because their disabilities meant that they could not cook. Others told me about how they were on SNAP partly because their disabilities meant they could not work, or were not hired. (The unemployment rate for people with disabilities is far higher than for those without.) More brought up how the foods proposed for the box – such as shelf-stable milk or peanut butter – were not things they could eat, because of their chronic conditions. And then there were questions expressed privately: how do people with disabilities cook? Why are kitchens inaccessible? Can blind people cook? (The answer to that last one is yes, and sometimes very well.) All of them, however, were guided by one big question.

What does disability have to do with food?

Disability and ability influence everything in cooking. This fact is true in the Jewish kitchen and in the general one. Cooking is, at the very base of it, an often difficult physical activity that makes use of physical skills to produce physical objects. Like any other physical activity or life activity, someone with a disability may approach food in a way that is partly determined by their body or mind. We often romanticize a specific way of cooking as being “Jewish,” despite the fact that this is inaccurate, but we forget that this way also relies on a whole set of assumptions about who is cooking. One is that this person is able-bodied and moves in a “normal” way. We assume that the person can hear, see, smell, use their hands or legs in a normal way, has normal amounts of energy, is neurotypical (basically, has a “normal” brain), and can lift things or stand or sit as needed. People with disabilities do not, cannot, may not, or choose not to cook in “normal ways” for a variety of reasons. I will walk through some aspects of this reality, using examples that are Jewish or not Jewish. Throughout this piece, I ask you to remember: there is no such thing as a recipe or a method that works for everyone! Not everyone can cook in a given way!

Kitchens and kitchen equipment are not always accessible. To start, many houses have kitchens that cannot even be accessed using a wheelchair or crutches. Counter space and food preparation space is often too high – if you use a wheelchair or cannot stand for lengthy periods of time, you might not be able to effectively use space in the kitchen, or may need to make adjustments. Surfaces are not adequately differentiated – if you are blind and feeling where the counter ends and a smooth cooking surface begins, then you are at risk of getting burnt. Never mind that many appliances are often not usable by someone who is blind. Knobs and tools are not easily usable by people who do not have normal hand function; others might have conditions that make it painful to grab onto something or twist something. Pots and pans are too heavy for some people to lift. The handles of utensils may also be difficult for many people to hold – given hand shape or hand conditions or tremors. One example that comes to mind is a friend with limited hand motion after an injury, who cannot hold whisks, spoons, or knives in a “normal” fashion. Rather, he makes adjustments – holding a spoon in a different way, for example – or uses a food processor for fine chopping. He also uses special chopping tools – for example, a potato slicer – that allow him to chop things safely, even if different foods need different equipment. Though we often make fun of pineapple choppers and apple corers (I have), these tools are especially useful for people who cannot chop things “normally”. However, specialized equipment, of course, costs money that many do not have.

The instructions to cook are also not always accessible. Cookbooks and recipes are often written in language that many people cannot understand. (Full disclosure: this blog is no exception.) Instructions are stacked in confusing ways, or use complex language. Many people with cognitive disabilities cannot understand indirect language, or find it easier to understand instructions that are delivered separately. In some cases, written instructions are too difficult to understand without images alongside. Never mind that many recipes assume a familiarity with certain skills that might not be there – or that some people cannot carry over from time to time. Think of, for example, “chopping” an onion or “browning meat.” All of these things are among the reasons why many people with cognitive disabilities never end up learning how to cook. In addition, facilities for people with cognitive disabilities are often completely disinterested in encouraging their clients to learn to cook (or really, be independent at all) – and thus many clients never quite learn. Writing a recipe that is usable by people with intellectual disabilities requires a very different skill-set from “normal” recipe writing, and also a lot more work on the part of the writer. Everything must be explained step-by-step with multiple forms of communication, and not in complicated language. When it works, the results are amazing. There are thousands of people with Down’s syndrome in the United States who have been able to not only start living independently after learning how to cook, but have even been able to find employment. The last section is huge in a country where most people with intellectual disabilities are never employed. That good result started when someone actually bothered to teach folks how to cook on those folks’ own terms, and not on able-bodied people’s terms.

Of course, cognitive disability is not the only way cooking instructions are inaccessible. Many recipes rely on instructions that rely on one sense alone – a sense that someone with a disability might not be able to use. Visual cues, for example, are useless for blind cooks. Though it is often easy to include an additional cue – for example, “sauté the onions until they are soft and slightly brown,” many recipe writers fail to do so. This habit makes it much harder to cook without sight – even though cooking without sight is possible. And writing recipes without visual cues is possible too – many blind food bloggers are doing it already! Then there are cues that ask the cook to do things with their hands. Many people cannot do certain tasks with their hands because of pain or limited hand movements. There at least should be more room given for the possibility that someone might use a fork, or a spoon, or another implement. Never mind that many autistic people have textural aversions that are very difficult to unlearn. It is not our job as food writers to tell people how to handle their aversions or to “adjust.” It is far easier to offer an adjustment for a recipe.

Which brings me to my next point: the act of preparing food is not always accessible. Certain tasks are not possible or not easily done with certain disabilities. You cannot check the color of cooking meat if you cannot see the cooking meat. You cannot chop an onion with a knife if chopping causes extremely painful wrist flare-ups. You cannot hear a hollow sound when tapping on bread in the oven if you cannot hear at all. These are all things that can be mediated with other methods of checking – meat thermometers, food processors, or visual cues. But some things are harder. If you have severe heat sensitivity, some types of cooking might be impossible for you, such as deep-frying. If you use breathing equipment, it may be dangerous to cook in certain ways, such as with a grill or by smoking. If you are unable to use your hands, certain recipes may simply be too hard to “adjust” to your abilities. There are also questions of lifting and chopping – if one’s motion is limited, certain tasks in cooking may not be possible, for example lifting a large pot or finely chopping beyond the ability of a machine or simple tool. Let us take potato kugel for example. Some of the accessibility barriers in the supposedly simple recipe include:

• Grating potatoes – which by hand or machine can present difficulties for some people with limited hand motion;
• Chopping onions – ditto;
• Squeezing moisture from potatoes – difficult if you have joint conditions or cannot stand at a sink, given that most kitchen sinks are not fully wheelchair-accessible;
• Greasing a pan – requires hand motions;
• Lifting a pan – difficult for those with joint conditions or some chronic illnesses;
• Being around a preheated oven – difficult for those with heat sensitivity;
• Mixing the ingredients – difficult for those who cannot “grip” a spoon;
• Checking to see if the potatoes on top have adequately browned – an indicator not accessible for people who are blind;
• Placing or removing the pan from the oven: a task that may be difficult for those with limited motion or hand use, and can be difficult if the oven interferes with wheelchair access.

And that, of course, excludes all sorts of cognitive conditions. Those with limited short-term memory may not be able to track the steps in a recipe. Those with attention deficit disorder (ADD) – which, yes, is a cognitive disability – may not be able to stay engaged with a recipe. Those with some intellectual disabilities may not be able to track “where they are” in a cooking process without help. Those on the autism spectrum may find their sensory sensitivities triggered during the process and may need to take a break to avoid the effects that can cause – headaches, panics, or sudden and extreme fatigue, depending on the individual. Temporary disabilities and chronic illnesses also interfere with cooking. Someone on chemotherapy might find that the smells of cooking trigger nausea or dizziness. Someone with lupus may develop a rash during heat-intensive cooking processes. Someone with an asthmatic tremor may not be able to hold a knife in a consistent position. If one’s dominant arm is broken, cooking becomes slow – especially if one has never used the other hand to chop. Oftentimes, the demands of a recipe may be inaccessible; in other times, the way food is taught to be prepared is difficult or impossible to some.

(This perspective is a key reason why one should always be skeptical of recipes that say “anyone can do this.” Who is “anyone”? What are the skills required? I guarantee you that, almost always, “not anyone can do this.” That is before, of course, the fact that these sorts of recipes are often nearly impossible for the inexperienced able-bodied person to complete. Cooking is anything but easy.)

Let us also not forget that cooking requires energy that people do not always have. Cooking takes time and physical power. Because of disability, some people cannot allot physical strength or wherewithal to cooking. Others can only stand, lift things, or move in certain ways for a limited period of time. Otherwise, one might become extremely exhausted. (Different things tire people out differently.)  In conversations today, cooking is something that is said to “take up spoons,” using the “spoon theory” developed by Christine Miserandino. This theory says that someone with a chronic illness, mental illness, or disability might only have so many metaphorical spoons in a given day – the spoons stand in for energy or wherewithal. Cooking takes up some of them. So if one has reduced energy due to depression or anxiety, or if other things have already eaten up one’s energy, a disability might mean that one does not have the energy to cook, even in a situation where an able-bodied person might be able to do so. People with physical disabilities or chronic illnesses might also use additional energy for their accommodations in cooking – for example, cutting in a certain way. If a kitchen is inaccessible, even getting to equipment also takes up energy. Chopping vegetables or peeling fruit or preparing ingredients – these can all take more energy for someone with a disability.

It is for this reason that I staunchly refuse to judge people who use prepared ingredients. Peeling chestnuts, cutting a pineapple, chopping onions or garlic – these all take time and energy, and doubly so if one has a disability that prevents one from doing it easily. Processed ingredients, supermarket-prepared foods, frozen chicken breasts, and pre-peeled vegetables are not lazy cop-outs, but hugely beneficial for people with disabilities who might not otherwise be able to enjoy peas, mushrooms, chicken, pineapples, or a range of other ingredients. (Not to mention those with small children who may not have thirty minutes to spare, tired civil servants, or couples rushing a quick dinner before heading to the opera. I use prepared ingredients like canned corn frequently.) When we ask people to prepare more of their own raw ingredients, we are not just asking for a return to labor that was, for most of history, arduous and annoying. We are also telling people with disabilities – and many others – that they are not cooking properly, even though “proper cooking” is neither healthy, nor practical, nor safe for many of those people! Instead of advocating for a return to the anachronistic “real cooking” popularized by Michael Pollan, Alice Waters, and Carlo Petrini, we should follow Rachel Laudan, Luca Simonetti, and Garrett Broad in calling for high-quality, healthy, and affordable industrial food, and accessibility of food in a way that people can enjoy with the aid of modern technology. This approach would allow people with disabilities to choose what to eat – and what not to eat.

Which brings me to my final point. What we eat, and how we eat it, is often informed by disability. Of course, some people with disabilities cannot eat at all, and rely on a feeding tube or other means to be nourished. There are also people whose disabilities prevent them from chewing or eating fully solid food; a new project in Japan, for example, is experimenting with cooking purees for elderly people who can no longer chew. Some people also convert to liquids-only diets for their chronic conditions. The very basic act of eating is affected by disability. Of course, one must add to this the various dietary restrictions caused by chronic illnesses and disabilities – many of which accompany one another. Some people cannot have gluten, others must limit their sugar intake, and others may eat a certain food that improves their symptoms. Someone with celiac disease – which is very common among people with autism or Ehlers-Danlos syndrome – cannot share fully in the very gluten-heavy experience of Ashkenazi cooking. There is neither challah, nor kneidlach, nor lokshen. As a result, the experience of Eastern European Jewish cooking is different from what one commonly expects.

There is also the question of aversions, which are especially common among people on the autism spectrum, but are common among neurotypical people too, especially during pregnancy. Many able-bodied and neurotypical people seem to be hell-bent on converting autistic folks from aversions, which are common among autistic individuals. In most cases, this seems to have to do more with a discomfort with autistic people than any genuine concern. In some cases, helping someone destroy an aversion is a good thing – but only if the person actually consents to doing so! Certain types of consensual therapy can actually help people learn to love new foods and develop a healthier diet. Sometimes, autistic people also want to get rid of an aversion for any number of reasons. Non-consensual and abusive methods, like ABA therapy, not only do not do so, but also add a rather harmful traumatic aspect to aversions. However, some aversions do not go away. An aversion is something that is physiological – it is not a socially learned aversion, such as the avoidance of eating dog in the West. One does not simply “grow out” of an aversion, or any autistic behavior. An aversion is also stronger than a dislike – encountering a texture or sensation to one is averse can throw one completely off balance and trigger various other physical symptoms, including nausea, tremors, or panics. One should never, ever trigger an aversion. While I was fascinated by Bee Wilson’s proposals about aversions in First Bite, I want to also add this follow-up note: that people can and do often cook and eat well taking all their aversions into account. One does not need to force someone averse to onions to eat onions, one can simply adjust. The person who does not like onion probably has a whole range of adjustments, some not even conscious! Most recipe writers, however, rarely explore substitutions to ingredients, which makes it harder for someone with an aversion to cook them. Many cooks without major aversions also rarely explore how to adjust their own recipes. Many autistic people – and many neurotypical people too – are excluded as a result.

Beyond aversions and chewing, there is also the matter of tables and tableware. Many places for eating, and especially many restaurants, are not fully wheelchair accessible: the table is often too high, or the chairs cannot be moved. Little people (those of short stature) are also often excluded. Plates, knives, forks, and spoons often cannot be held by those with limited hand movement. People who are blind may need to be told what is where on their plate, especially at a restaurant. The temperature of food matters too – some people cannot eat piping-hot food, while others cannot eat food that is icy-cold, both because of various chronic conditions.

So from kitchen to table, we get a picture of how cooking and eating may be inaccessible.

Before I conclude, I want to also add a personal example. I am on the autism spectrum. I do not have the food aversions many of my peers have, except for gummy-sticky textures. (The mere mention of marshmallows or gummy candies can make me seize up.) I am also far more able to pass as “neurotypical” than most autistic folks. By and large, I cook in “typical” ways. However, what does not make it into the blog is the ways I do accommodate my sensory sensitivities – the fact that I have a much harder time dealing with extreme heat, light, or noise than many neurotypical people. When I am cooking some of the recipes that require high heat, I often have both a fan running and a window open. During daylight hours, I often cook without electric lights, because I find the combination of electric light and sunlight to be so jarring as to completely put me off balance. (It sometimes causes migraines.) I am also very careful with pot and pan placement, because I will “hear” a loud metallic thud for far longer than other people. I wash my hands frequently when working with sandy or sticky substances, because I find it very distressing to feel these textures for more than a moment. At this point, these accommodations are almost automatic for me in my own kitchen, or my mother’s. Yet when I prepared food in my friend Jeremy’s kitchen, I found myself slightly overwhelmed – the room was so hot! So bright! I, someone with 16 years of cooking experience and a familiarity with a range of ingredients, found myself overwhelmed. I scraped by on my experience. It is easy for me to see how many people simply, in some circumstances, struggle with cooking, or cannot cook at all. Especially if they do not like cooking in the first place – and to be honest, experiences of inaccessibility might easily contribute to that dislike. And that is not even getting into the physical inaccessibility of so much of cooking, as I have outlined above.

In this brief tour, I have barely scratched the surface of all the ways disability affects cooking. I aimed to provide an overview of many of the various ways in which food and disability are inextricably linked. Disability affects the way we make, consume, and perceive food. The topic is so large, however, that there is always more to say. There are many things I did not cover. Shopping for ingredients and stocking up a kitchen have many accessibility barriers, enough to merit a separate blog post and probably a book. The discussion of disability in food writing circles is not only ableist, but often badly misinformed. I only made the briefest mention. There is also a comparative lack of research, which is distressing given that the population of people with disabilities will only grow with aging. Many voices of people with disabilities are also often suppressed. We need to, as food writers and thinkers, lift up and amplify these voices and experiences whenever possible. If progress is inaccessible, in food or anywhere else, it is not progress. Towards this progress, I will make every effort to continue this research, and to raise the voices of cooks, eaters, and writers with disabilities.

In all of this, the foodways of people with disabilities must never be seen as lesser, nor should they be stigmatized. There is a tired and ableist trope that people with disabilities are being lazy or inconsiderate by not assimilating to “normal” food practices. As I have shown above, “normal” foodways are simply inaccessible. People should have a right to food practices, of their own volition, that deviate from a given norm. Everyone has to be nourished; everyone should be able to do so within their own ability. Demanding normalcy is not only ableist, but it is in fact lazy and inconsiderate. Perhaps, instead of demanding that people with disabilities meet a standard of normalcy regarding food, we should instead ask what able-bodied people should do to make food and cooking more accessible. I outlined many and varied accommodations here; readers can start by considering those. These ideas may include:

• Not stigmatizing people who use or eat prepared foods, because they allow people with disabilities to have access to many foods.
• Accommodating the aversions of the autistic people around you.
• Joining efforts to make sure that kitchens in new housing are accessible for people who use wheelchairs.
• Writing recipes in ways that do not rely on visual cues or needlessly complex language.
• Not making rude or negative comments to people who do not have the energy to cook or eat a certain type of meal.

None of these are accommodating laziness or lack of consideration. All of these are not being lazy or inconsiderate to people with disabilities.

Accessibility in the kitchen also benefits everyone. After all, most people end up with a disability at some point in their life. It may be a chronic illness, a broken arm, or memory loss at an old age. Something, somewhere, causes “basic life function” to be impeded in a way that is not normal, and thus that person is now someone with a disability. Maybe it is temporary. Maybe it is permanent. In every case, that person should have the right to food, and the right to approach food in an accessible way, whatever that way may be.

Without a demand for “normality.”

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An enormous and heartfelt thank you goes out to Jacob Remes, Dana Kline, and Jeremy Swack for encouraging me to turn the Twitter rant into more coherent written work. Another enormous thank you goes out to Nahime Aguirre, Jay Stanton, Karen Waltuck, Jacob Waltuck, Olivia Ortiz, Walei Sabry, David Friedman, Jonathon Epstein, Victoria Cross, Sumaya Bouadi, Phoebe Ana Rabinowitsch, Akiva Lichtenberg, Ashley Goldstein, Jessica Belasco, Kate Herzlin, Alex Cooke, and Sara Liss for many discussions of how disability, cooking, and the accessibility of food culture intersect.

If you want to read recipes written by and for cooks with disabilities, check out Disability FEAST. Christine Ha is arguably the most famous disabled chef in the United States, and the winner of MasterChef Season 3. Her blog is delightful, even though almost none of the recipes on it are kosher. There are some great guides for making cooking lessons accessible for people with cognitive disabilities, this one by Lisa Pulsifer is my favorite. David Friedman is a disabled restaurant reviewer whose blog, The Disabled Foodie, reviews restaurants for both accessibility and food! Ava Romero is an autistic chef who has a lovely blog – I cannot wait to try the pumpkin spice doughnut recipe! Andrew Pulrang did a fascinating study last year about the intersection of disability and food, it makes for good reading.

I have also written and presented about disability access in communications – you can check out some of my work here:

https://www.youtube.com/watch?v=6mqeymglU7A&feature=youtu.be

http://hypocritereader.com/82/whats-wrong-with-you