The Gluten-Free Community and Its Pool

by Jeanne on August 24, 2012

Note: As of 8/27/12 I have closed the comments on this post in order to preserve the anonymity of the other person involved.

This week I had an odd Twitter interaction.  A member of the gluten-free community, who is a staff member with a gluten-free magazine (and writes/edits the blog for that magazine), posted that s/he was “cheating” on her/his gluten-free diet for a special event.  I replied and said:

“Not to be a pill, but telling people you ingest gluten when you feel like it makes it hard for those of us who can’t.”

S/he tweeted back (and wrote a blog post on the magazine site that did not name me) to say that s/he is not responsible for other people’s feelings and that what s/he does is her/his business and no one else’s business.  And I agree—to an extent.  As this person pointed out, we all have a “personal journey with gluten,” etc., etc., and we all make decisions accordingly.  And I agree that s/he is not responsible for my feelings.  I meant to convey that by publicly tweeting the fact that s/he “cheats,” s/he gives the false impression that anyone in the gluten-free community can cheat when they want to.  I think this person thought that I meant that my feelings were hurt, which they weren’t.

Unfortunately, in the blog post, s/he framed my comment as that of an intolerant person who wants everyone to cater to my needs.  Which is untrue.  This is probably the greatest challenge I and other truly gluten-free people have: rectifying our medical needs (which focus on food) while wanting to be in social situations (which often focus on food).  If one asserts ones medical needs (to not eat gluten) and one’s social needs (to eat with other people) at the same time, one risks being perceived as difficult and selfish.  It’s sad that this is the case, but it’s one I struggle with on an almost daily basis.

There are complicating factors here.  It turns out that this person is not gluten-intolerant, per se.  S/he avoids gluten most of the time due to another health issue.  Therefore, this person can choose to eat gluten whenever they want.  S/he can be more loosey-goosey with gluten than many of us can be.  I will admit that this makes me feel uneasy.  It’s odd to find out that someone who is a voice of a gluten-free magazine is not gluten-free.   Or, more accurately, can choose when to be gluten-free.  It’s like finding out that the editor of a women’s magazine is a man. I’m not saying that it’s necessarily bad, but it does give me pause.

And this is why: in their blog post, this person wrote: “I am not a spokesperson, role-model or guide for what is best for you.”  It is on this point that I disagree.  I would argue that this person–by virtue of her/his choice to be a public staff member for a gluten-free magazine, to write a blog on gluten-free eating, and to be active on social media–is a role-model for others in the gluten-free world whether they want to be or not.

I feel very strongly that those of us in the public sphere do have a responsibility to our food allergy/intolerance/sensitivity community that non-public people might not.  We need to be more careful and more aware of what we say and do in relation to our food needs and how those actions affect the community.  Every time someone who is publicly gluten-free (especially those who are representatives of gluten-free businesses) chooses to do the thing that they tell people they can’t do (eat gluten), it has ramifications for the entire gluten-free community.

The ramifications of the actions of people like this person on our food allergy community are greater than I think s/he realizes.  Broadcasting on social media the concept that s/he can “cheat” whenever s/he feels like it gives the general population the impression that all of us can cheat whenever we choose to.  Unfortunately, by extension, this can inadvertently put food allergic/intolerant/sensitive people in situations that are physically uncomfortable at best and life-threatening at the worst.

If we were all unconnected individuals and lived as hermits with no contact with each other, none of this would matter. But we are interconnected. This person and I are co-members of the larger gluten-free community.  But this person has an ability I don’t have—s/he can jump in and out of the gluten-free pool whenever s/he chooses to.  For this person to cheat when they want to and then publicly flaunt this ability on social media is kind of like peeing in the community pool.  Further, this person can leave the pool, but those of us who live in it are stuck with the ramifications of their actions.  I’m not saying that s/he shouldn’t be able to jump in and out of the pool, but I call upon her/him and everyone else who is in the same fortunate position (especially if they have a public presence) to be aware of the ramifications of their public actions on other members of the community.

Edited on 8/27/12 to add: I want to be clear: I do not think this person, as a person, is bad or intended harm.  I don’t know them on a personal level.  And I really hope that people aren’t leaving hurtful or malicious comments on that person’s blog–that serves no purpose.

Further, to be even more clear: to be honest, I had forgotten about the Twitter exchange until this person put up an explanation of it on the magazine blog (and tweeted me that they had done so).  As far as I was concerned, this was a personal issue to which I responded personally on twitter until this person made it professional by putting it on a professional site.  That needs to be recognized.  If this person had put this on their personal blog, it would not have been the professional responsibility issue that I currently see it as.

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