Tag Archives: selfish activism

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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