Starved For Inclusion

Writer Rachel Chabin advocates for inclusion for teens with special dietary needs.

When you think of celebrating Jewish culture, one of the first things that come to mind is the food we eat. However, these meals are hardly comfort food for those of us with severe allergies or medical conditions that require dietary restrictions. While holiday meals and simchas can be exciting events for any Jewish person, being restricted by what you can eat means celebrations can become a trial and participating in them often becomes a hassle.

In December 2006, after months of pain and years spent at the bottom of the growth chart, I was diagnosed with celiac disease and began eating a gluten-free diet. Three years later I was diagnosed with diabetes.

While I have adjusted to these conditions and try to make the most of living with chronic problems, my restrictions still limit the choices I can make. In the past few years, spending time in Jewish summer camps and traveling with other students on religious immersion trips has been difficult — and in some cases, impossible — because I cannot eat what other participants can. 

This is true for events on a larger scale, as well. It’s hard to participate in Jewish summer camps, Shabbatons and Israel-experience programs when I constantly have to worry about finding food that won’t make me sick. Unfortunately, many Jewish organizations and outreach groups are unequipped or in some cases, simply unwilling, to accommodate those of us with special dietary needs. Despite the good intentions of many of these groups, this lack of accommodation often leaves us with few opportunities and a hard time procuring the few chances we can get.

Plenty of disabilities and medical conditions are immediately apparent, but conditions such as food allergies, celiac disease and diabetes are more difficult to recognize. These invisible illnesses are easy to miss — those of us who are affected look, speak and act like everyone else. However, these chronic problems are no less difficult to manage than obvious impairments, and the consequences of improper management are just as severe.

This invisibility is why so few Jewish (and secular) groups meet our needs. No self-respecting organization would expect a wheelchair user to enter a building with only stairs in front, but when it comes to a food disability, it’s easy to ignore the gravity of the restrictions and the dangerous consequences.  

But just because people can’t see what’s wrong with us, doesn’t mean we don’t need their help.

Celiac disease is an autoimmune disorder that causes the body to misread gluten (a natural protein found in wheat, barley, rye and spelt) as an allergen causing the immune system to attack the small intestine whenever an affected person eats something with gluten. This damage to the intestine means that the body can’t absorb any nutrients, and so eating gluten can lead to debilitating discomfort, malnutrition and cancer.

When people hear gluten-free diet they don’t generally think of a severe medical condition; they think of fad diets and weight-loss tips centered around the elimination of bread and starchy carbohydrates. Although this trend has created more awareness about gluten, it has actually hurt people with celiac, as many have come to regard eating gluten-free as a dieting tool rather than a medical necessity. They think it’s something we choose to do, but people with celiac aren’t given the option.

This is why it can be so difficult to participate in Jewish events and community programs — can you think of a single simcha, retreat, summer camp or trip that doesn’t include a catered meal or a visit to a restaurant? Not likely. Risks and dangers lurk in almost every dish: everything from sauces to beverages can potentially contain food that would make me very sick, and so it’s imperative that I know exactly what I’m eating and how it’s prepared. I’ve found gluten lurking in salad dressings, soups, dips, smoothies and dozens of other unexpected dishes. (I’ve even seen it in some medications.) Gluten often appears in items that would seem harmless and ones that are almost identical to foods I can eat. Therefore, it’s imperative that I know exactly what I’m eating and how it’s prepared.

Living with dietary restrictions means constant vigilance. We must know every ingredient in whatever we eat or drink, and it’s not always easy to obtain reliable information. When allergies or restrictions are very severe, sufferers often can’t take the word of waiters or caterers unless they can be certain the people are well-informed about the specifics of their medical needs. 

In the vast majority of cases, Jewish organizations do not accommodate people with dietary restrictions and when they do, the information is difficult to find or absent from their websites. That sends the message that they consider us a burden.

Taglit-Birthright Israel, an organization that sends Jews in the 18-to-26-year-old demographic to explore Israel for free, states that it is the “birthright of every Jewish person to visit Israel.”

Yet Birthright offers just a handful of special-needs trips for people with mobility problems and developmental delays. Last year, there was a trip for people with Irritable Bowel Syndrome and Crohn’s disease, but there has never been a trip for those of us with celiac or diabetes, both of which affect large numbers of young Jews.

There are organizations with a clear message: they have no means to accommodate people with these problems and they aren’t going to try.

International March Of The Living (MOTL) is one such organization. The trips, which bring students to the sites of concentration camps before taking them to Israel, are physically and emotionally intense. In a note on the youth application it states that “the organization will not accommodate any specific dietary needs” and recommends contacting a local MOTL office to discuss a participant’s requirements. Limited access to food I can safely eat means I would have to bring a substantial amount of my own food to cover the difference. This could be challenging particularly when packing space and storage are limited.

I do not belittle the efforts made to welcome participants with mental, motor or social problems. These are a crucial and integral part of including Jews from every walk of life in Klal Yisrael.

The problem remains when organizations brush off dietary concerns and disabilities that may appear less serious, they’re excluding us from participating on equal footing in communal Jewish life.

Segments of the organized Jewish community carry out a kind of passive exclusion. No one sets out to discriminate against us or make our lives more complicated, but we get left out in the cold when groups don’t want to work with us to maintain our health while participating in their meaningful programs.

If organizations wish to include all members of the Jewish community, they need to start by working with us as partners. We are usually (if not always) eager to explain our needs in the hopes that others will clearly understand us and will assist us. Communicating takes the guesswork out of the entire operation and lets both the organization and the participant feel more comfortable about tackling an unfamiliar task.

Many don’t realize that purchasing gluten-free food won’t help us if it’s cooked in an oven used to cook gluten. They don’t realize that diabetics need a schedule that takes insulin levels into account.
 
Since my diagnosis of celiac eight years ago, I’ve dealt with the awkwardness of bringing my own food to events and having to refuse food at parties and gatherings. I’ve had to give up the idea of attending some trips and retreats because I knew I wouldn’t be accommodated. There’s no reason those of us with special dietary needs should be left out with so many sources of information and channels of communication available.

Rather than excluding us, there has to be more willingness to work with us and treat us as relevant equals. With more communication, these organizations can bring us into the heart of their efforts and let us participate in transformative social and spiritual experiences. If not, a valuable part of Klal Yisrael will linger at the fringes, imagining the joy and fulfillment of those in the center.

March of the Living responds: “The International March of the Living does all that it can to cater to participants with specific dietary needs. During the portion of our trip in Israel, this is generally not a problem. Due to the large scale of the operation in Poland, however, where kosher food is prepared and flown in from Israel in advance, it can be difficult to meet individual requirements. In this case, group leaders will work with participants in advance to bring supplemental food if necessary.”