Late last summer, I was invited to be on the official blogger team for the Gluten & Allergen Free Expo. This is a huge event. If you follow any gluten or allergen free magazines, big blogs, et cetera, you’ve probably heard of them. I was ecstatic that they wanted me to me one of the bloggers.
I’d been trying to get my blog into the bigger, more well-known circles, to find a way to develop more networking, and, perhaps, finally have some real interaction taking place here (the comments from readers are, sadly, pretty sparse, which makes it more difficult for me to know what you want to hear).
I jumped at the opportunity.
As the event drew closer, more information about who was presenting, sponsoring, and so forth, became available, and I began to have some serious concerns — although I still wanted very much to go as as an official blogger. Thus, I sent an e-mail to my contact person. Naively, I assumed that since this event was being put forth in part by and for the gluten free community, they would be open to hearing concerns and taking them under advisement.
But that wasn’t the case. The response I received was that it was in their best interest for me to be removed as an official blogger (more on that later), and that if I still wanted to come, I was welcome to pay an exorbitant amount of money (that we couldn’t afford) to attend.
We didn’t go.
So what was the issue? I’m autistic, and this event turns out to be heavily sponsored by Generation Rescue, an organization that pretty much any autistic person can tell you does far more harm than good to the actual autistic community, and beyond.
I’ve noticed that more and more gluten free companies have decided to do autism outreach. That in and of itself is not a problem. But if you do it in such a way that you reach out to autism organizations which hurt and degrade autism and autistic people, and then refuse to listen to actual autistic people when they voice their opposition, that is a problem.
How can you say you are helping when you ignore the very people who you are claiming to want to help?
When I see autism outreach coupled with gluten free, I always get anxious, and unfortunately, so far, with good reason. Gluten Free companies and organizations, in my experience, reach out blindly. They partner up with the biggest organizations which are financially capable of making the most noise. But this doesn’t mean they’re the best.
GFAFExpo lists Generation Rescue as a platinum sponsor, a vendor, and as the organization behind their classes being presented on both Saturday and Sunday. Discovering this tempered my enthusiasm for going considerably. I’ll admit to actually crying.
After talking to T and with my Mom, I decided it was far better to go and try to educate. Obviously it’s far too late in the year for GFAFExpo to find a new vendor(s), or to partner up with responsible, respectable autism groups, but there is always next year.
Unfortunately, that wasn’t to be.
I have been removed as an official #GFAFExpo blogger due to my concerns about the expo’s partnership with an anti-science/anti-autism group. I was specifically told that it would be in their best interest if I only came as an attendee, but on the same hand, they “value” my opinion. This is demeaning at best and I will not be attending.
I am no longer recommending this event. I especially encourage all autistic/ND people not to go. There are other, friendlier expos.
If they ever have a change of heart and are willing to be educated on why it’s in poor taste to partner with a group that is not autistic-friendly when they claim they want to help the autistic community, I will revisit this issue.
Please let me know if you have any questions.
If you are part of this expo team and are willing to listen, willing to change your partnerships, please let me know. I can point you in the direction of autistic (NOT autism) organizations which actually involve, or are fully run by, autistic people.
