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I share your concern and think your suggestion of an open letter in
worthwhile.

When I was first diagnosed, I spoke to a friend who is
hearing impared. I chose her because she is very direct about what she
needs from people if they are going to communicate. She reminds people
about them needing to position themselves where she can see their
mouths. She interrupts if theres ambient noise, asking to wait till
its quiet. She doesn't 'just try to get by', guessing at what has been
said. She asks for things to be repeated
often. She doesn't apologize. She is willing to risk putting these
burdens on those she talks with because she values herself and her
communication.. because she believes she's worth it. All of this has
its equivents for me. I wanted to learn from her how to manage being
a celiac in a social world. She has been a wonderful model. One of her
first suggestions was to give my close friends and family real solid
information on the disease. I gave these people the CSA information
pamphlet. They were all grateful. It makes sense that thats what they
needed, from an official authority. It was a good start. But of course
the task is ongoing, with new people in our lives or people we're not
with all the time forgetting. I find it can take alot of courage and
sense of self-worth to take care of ourselves, emotionally and
physically.

Brenda
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Brenda A. Graham
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Admin. Computing, Carnegie Mellon University, Pittsburgh, PA.