helen-louise (baratron) wrote,

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how not to talk to a disabled person

I was going to refer various people here to ukvegans, but I'm not sure I want to now. I read the community userinfo carefully before I joined, and it seemed welcoming of people who weren't vegan but wanted to be. I posted a message asking for advice about sugars, and just briefly mentioned that I wasn't actually vegan because of IBS, but sympathised.

Well, I wish I hadn't bothered. Because I got a reply from the owner of the community that was really damned dismissive and hurtful, telling me "Since you are avoiding dairy already, [...], I would say that it's really not much more trouble to avoid egg and honey too, and you shouldn't have any more trouble with IBS on a vegan diet than you do on an omnivorous diet." Um, excuse me, who lives in my body here? If my body would tolerate it, I would put nothing of animal origin into it. But veganism is impossible while I can't eat fruit or vegetables - and, damnit, I didn't come into the community to be preached at! I read the community info, and it didn't mention that preaching would occur, otherwise I wouldn't have gone there.

The part that made me completely lose my temper was "It's my belief that IBS is caused by psychological and emotional factors anyway [...]". No, I'm sorry. One of the causes/triggers of IBS is psychological or emotional factors. It is not the only one. My breathing pattern disorder is a direct cause of IBS, as sufferers swallow air when they breathe badly. The main cause of IBS must surely be allergies and food intolerances. Oh, but of course, all allergies are caused by products of animal origin! Yes, no one's allergic to wheat, strawberries, celery or tomato! (to name four common plant allergies I can think of off the top of my head). Ah, fucking hell.

I am not over-reacting. Over-reacting would be to post a reply with the kind of swear words that are in this post and storm out of the community. (I can swear here, it's my fucking journal). I tried to post a moderate reply, stressing that I do know what I'm talking about, that I have considered the situation carefully, and trying to point out that the maintainer was being dismissive of my self-knowledge without saying it directly. The fact is, it is FUCKING RUDE to say to someone you have just met that you know more about the illness or disability they have than they themselves do. Even if you're the world fucking expert in that illness, with 40 years experience of treating patients, and huge numbers of publications and research grants all studying it, you DO NOT KNOW what it is like for that individual patient to live with the illness.

I was going to make this friends-only but fuck it, it deserves a wider audience.

And if you still don't understand what I am so upset about, read this post by rivka.
Tags: disability

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