Tag Archives: hunger

Not enough celiac awareness? I’ve got plenty.

So we’ve come to Celiac Awareness Month. I’m excited for all of the special features and extra blogging everyone will be doing this month, and maybe I’ll even get out to an event or two in the real world. But for myself, I’m mostly going to keep doing as I’ve been doing. Because I’m already celiac-aware. Celiac-hyperaware, you might say. If you split open my skull to check, my brain might look something like this:

celiac_aware_brain

Okay, maybe with a little less space for spatial awareness. But you get the picture.

Point is, I already devote a lot of gray matter every day to thinking about, talking about, writing about, obsessing about celiac disease. If I could only remove tiny hunks of my brain tissue and implant them in other people’s brains to repopulate their awarenesses, then they could think a bit more about it, I could think a bit less about it (and more about my novel), and we’d have ourselves a healthy celiac awareness ecosystem. Like a fecal transplant!

In a small way, that’s what I’m trying to do with this blog. (The awareness transplant, not the fecal kind.) Although, let’s be honest here, most of you are pretty darn celiac-aware already.

When I learned I had celiac disease, I started from a point of heightened awareness. I’d been researching food-related illnesses for some time—call it a hobby—and in my professional life I worked (and still do) with gluten-free cookbooks. I also reaped the benefits of living in a place and time that is in fact more celiac-aware (or at least gluten-aware) than ever before.

But I definitely became more aware once I had it myself. I started this blog, I saw celiac symptoms in everyone I knew, I began musing on grandiose ideas like hosting gluten-free speed-dating events or providing gluten- and allergy-free birthday cakes to kids whose parents can’t afford them. So far, these ideas have foundered on the shoals of logistics. If you live in New York and want to talk about any of them, please get in touch!

Although I’m enjoying this blog and being a part of the smart, supportive, friendly community here on the internet, I’ve struggled with this. Given that I have celiac disease and I think a lot about celiac disease, I feel vulnerable to the claim it’s “self-indulgence” more than “celiac awareness” that fills my brain. I feel guilty.

For example, when I wrote about the connection between hunger and celiac disease, I looked into how one could donate gluten-free food. But then I thought, where was I before I knew I had celiac disease? And even setting that aside, where have I been in general? The hurricane that wiped out huge portions of the New York metro area happened months ago, and no doubt the best time to begin contributing would have been in October.

Plus, hunger was of course a fact long before that, a systemic problem affecting an enormous population nearby me and worldwide. I knew that well before the fall of 2012. Why haven’t I been better about contributing to the solution? Why has it taken me having a problem to want to help others? And why is the idea of donating Rice Chex so much more appealing to me than the idea of donating money to a general fund for the hungry?

Then I get cynical. I wonder, does every celiac disease advocate have celiac disease? Are all food allergy advocates people who have, or whose family members have, food allergies? Are all antiracism activists all people who have experienced racism? Are all GLBTQ activists GLBTQ? Are all feminist activists women?

Is all activism selfish?

Are we all too wrapped up in ourselves to get involved in helping people whose concerns are foreign to us? And is a disabled person who spends his life advocating for disability awareness less noble than an abled person who does it?

I believe the answer to all of these is no. There are people who advocate for others almost reflexively, whether or not there’s a personal connection. There are entire industries built around nonprofits and public service that allow many, many people to work or volunteer in support of awareness or advocacy campaigns of all kinds.

And furthermore, I don’t think activism is really cheapened by being beneficial to its advocates. If someone spends a lifetime advocating for the rights and happiness of a population to which he happens to belong, is that so bad? Plenty of other people are part of the same population, and not doing much to help it or any other group.

A life of service is a good life. Sacrifice and selflessness can support a life of service—but only to a point. If you feel unconnected to your work, you’re more susceptible to burnout. And if you have the impulse to help but allow yourself to be stymied by regret that you didn’t help enough before, or aren’t helping enough people, or aren’t helping for the right reasons, then you won’t end up being helpful at all.

Part of any awareness campaign must be an awareness of just how many things there are to be aware of. There are good and bad causes, selfish and selfless concerns competing for everyone’s attention at every moment. By focusing our energy on one concern, we’re setting aside others.

I aspire to be aware of suffering, injustice, and inequality, broadly speaking. I hope that my daily words and actions demonstrate this, and when they don’t, I hope to be called on it so I can do better. I hope that as my life evolves and settles, I find the time and the energy to help more people more than I do now. And in the meantime, I’ll strive to be self-aware about my own divided awareness.

That said, bring on the Bob’s Red Mill giveaways. I’m ready.

Happy Celiac Awareness Month, folks.

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Hunger, service, advocacy, and pizza

Domino's Wisconsin 6 Cheese Pizza Slice

There’s a homeless shelter in walking distance of my apartment, where I volunteer once a month. It’s “transitional,” meaning it’s intended for families who need short-term housing assistance (though I’m not entirely sure what “short term” means, because I volunteered there several times last autumn, then recently signed up for the same volunteer project again and encountered many children I recognized from the fall). The project I do is called “Read to Me.” We volunteers come in, read with one or two kids each for about 45 minutes, then the kids do a craft, then they get pizza.

As you might expect, the reading is tolerated but the pizza is the main event. The kids get jittery and excited as pizza time nears, chanting, “We want pizza!” and—even more tellingly—actually settling down upon being told that was the condition for receiving the pizza. The kids are of all different reading levels, all different personalities, and all different shapes and sizes, but they’re united in their love of pizza.

But one kid, small for his age, chanted along with the rest but barely nibbled the very tip of his slice, getting his hands smeared with grease but otherwise hardly touching the pizza. When the others were clamoring for seconds, he just sat quietly. I couldn’t help but notice, and to wonder why this would be. Obviously, there could have been any number of reasons why this kid wasn’t eating his pizza: maybe he’d had breakfast late, maybe he was picky, maybe he didn’t actually like pizza but enjoyed joining in the collective effervescence of anticipating it. There was no real reason to jump to the conclusion that pizza made him feel sick, but I did wonder if that could be it. 

For a kid who has certain food intolerances or celiac disease, pizza could be a painful present. I wondered if there was any chance he did, and if so whether he was diagnosed and whether the shelter staff was aware. I wondered whether their being aware would make any difference. Introducing gluten-free options to a pizza party for 30 kids adds logistical issues and extra expense. This particular party was no-frills: plain cheese pizza with juice drinks and fruit snacks that were already in the shelter’s cupboards. The only difference might have been that this boy would have been told not to eat the pizza, to simply go without.

I know I see the world through gluten-colored glasses recently, and I try to work against my own tendency to see celiac everywhere. I’m really not claiming that this boy has celiac disease. But watching him not eat that pizza got me thinking. From a statistical standpoint, it’s of course true that some people in homeless shelters have celiac disease or food allergies. I am not sure what kind of food is provided on a day-to-day basis in homeless shelters, but given the ubiquity of pizza and cake as special treats and the high representation of wheat and allergens in, for example, public school cafeterias, I have a feeling there isn’t much accommodation of special dietary needs. I wonder if any accommodations are made to avoid or treat diabetes. If anyone knows more about this, I’d love to hear from you in the comments.

Similarly, some families whose incomes qualify them for food stamps must contend with food allergies or food-related disorders like celiac disease. This is troubling because, according to the image below, the most subsidized and therefore cheapest foods in the US are wheat, corn, and soy—two out of three of which are on the list of the top eight allergens, and one of which of course contains gluten. (And corn really isn’t a particularly nutrient-rich food compared to other whole grains and is often used in highly processed forms such as syrup.)

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As much as I’m in favor of cooking from scratch using whole foods, and as much as I feel that this can in the long run be considerably cheaper than convenience foods, convenience foods really are more convenient than whole foods, or at least they seem as though they are—especially to a parent with multiple jobs, long commutes, health issues of their own, older and younger family members to support, and any number of other issues that impact the energy and time folks have available to cook. And gluten-free/otherwise “safe” (dairy-free, organic, low-sodium, low-sugar, etc.) convenience foods are almost always more expensive and difficult to find than their counterparts.

1166663921_00905Sure, I might consider it easy and inexpensive to buy a package of corn tortillas and a few cans of beans, sauté them with onions and garlic and spices, top them with cheese, tomatoes, and lettuce. With this kind of simple recipe in one’s back pocket, there’s not much need to ever buy a premade meal. But people need to know the simple options available, and they need to get past the initial grocery shopping barrier, where a stressed shopper may find it easier to throw a few bags and boxes into a cart and get in line rather than visit several aisles to select fresh ingredients. Then, even if the time to cook a fresh, lower-sodium, lower-sugar, no-allergen meal is about the same as to cook, say, Hamburger Helper or Kraft mac & cheese, people need to know and believe that it is.

I don’t think parents of any economic bracket are feeding their kids peanut butter if it’s going to send them into anaphylactic shock—though please correct me if I’m wrong—but for parents of children with celiac disease who must choose between feeding their kids food that makes them ill or not feeding them at all, the “correct” choice is clear but incredibly unfair. Feeding a kid with celiac disease a sandwich is “just” going to cause them discomfort, albeit in some cases severe discomfort (as well as long-term intestinal damage that can be reversed in the future). Living Without covered this topic some time ago in this article, which includes this wrenching quotation from a mom discussing the available options at her local food bank: “My daughter will just have to live with diarrhea.”

But she shouldn’t have to. No one should. People who have (or whose children have) celiac disease and who can’t afford groceries, much less pricier gluten-free staples like bread and cereal, need to be able to get gluten-free food from shelters, food banks, and soup kitchens. Foods stamps need to cover gluten-free or allergen-free food. Companies need to donate things other than peanut butter and wheat pasta to food banks (which, from what I can tell, actually prefer to get donations of money or time from average citizens, since the foods donated are sometimes unsuitable). We need to provide support for those in need that addresses all their needs. 

I found out about Food Bloggers Against Hunger yesterday, and I didn’t try to officially sign up since it was so last minute and I’m not really sure I’m a food blogger anyway. But I felt inspired to join in, so I wrote this post. Check out the other posts and consider sending a letter to your Congress reps asking them to protect SNAP funding.

I fully understand that in a time when we’re fighting to keep even the financial assistance we already provide to the hungry, it may seem excessive to ask for even more specialized care. But I think it’s important. Celiac disease advocacy, though important, seems to often focus on issues of available food and awareness in restaurants and, recently, in college dining halls. As important as this may be, it concentrates our energy on spaces that already cater to the relatively privileged. I feel that we as celiac or food allergy advocates need to broaden our scope, to focus on the pressing daily reality of starvation in our country and in others. I’m just not totally sure how to do it, which is why I’m opening this up to you now.

Do you agree we as celiac or food allergy advocates need to broaden our scope? What concrete things can we do for those of us who are struggling to get by? What things do you do already to help the hungry, whether food-restricted or not? Do you support SNAP funding?

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