I don't see any reason to be be dealing with the behaviour of a hungry child, haven't from birth.Tallulah, I'm not really even sure what to say to this. Have you read anything in this thread? The problem for my family isn't that any ONE person feels free to ignore "No food or drink" signage as some kind of infringement upon their rights-- but that so MANY people do. ANY location seems to be fair game for an impromptu picnic.
Food that appears unexpectedly and at times/places where it has NO business being (museums, stores, workshops, etc, etc) constitutes a
barrier to disabled persons like my child. Yes, her limitations
are significant enough (and then some, frankly) to be considered a disability.
If I had a nickel for every time someone has snidely asked us how we "do _______ if she's
so allergic," I'd be a very wealthy woman. Very wealthy. Mostly, the answer is "we don't. At least not the way that you're familiar with this activity." She saw her first movie in a theater when she was elementary aged, and even then, there were a lot of little particulars involved. Her first "sleepover" was when she was 13 years old.
So yeah, it's not that I ask other people to do stuff
so that I don't have to. It's because ALL that she and we are capable of doing
just isn't enough sometimes. And yes, on SOME special occasions, I feel that it's not too much to ask of other parents to make themselves or their kids "go hungry" (or at least not eat allergens in her vicinity-- and wash their hands) so that my child can do things like...
visit a public library
attend a museum event
see a play or concert
participate in a team sport
try on prom dresses at a boutique
go to a book signing
attend a ceremony intended to honor her in some way
make a purchase at a toy store
attend her own high school graduation ceremony
If none of that is "reason enough" to think twice, then I'm at a loss, honestly. Is it that people don't
believe in my daughter's reality? I'm truly not sure. I can't quite think that anyone who DID completely understand it would
actually think that pulling out a snack in line at the bank was worth her life, when compared to forcing their unhappy three year old to wait ten more minutes.
For once and for all-- what other people EAT and DO with food
can and regularly DOES impact food allergic people. Their lives are
really hard already.
I see this as being very much akin to resenting the "empty" parking spaces reserved for those with handicapped plates/placards. Sure, they are usually prime parking spaces, and most of the time, it wouldn't hurt a thing since there are usually several of them empty either way... it would sure be much more CONVENIENT to park there-- particularly during inclement weather. But I see a reason not to do that. It doesn't seem to be too much for me to be (very slightly) inconvenienced in order to make someone else's life
just a little less harsh. I am reminded, as I walk past those empty parking spaces, that I don't have to consider a mobility impairment
all of the time.
I am really not trying to start an argument about this so much as explain what life is like when you live as we have to. I'm just asking that anyone reading this accept that for some people, this IS reality. It's not exaggerated or made up, and we very definitely didn't CHOOSE to have this happen to us.
I cannot count the number of times when I've seen that light finally dawn on an individual-- when they watch us walk away from something that they can see means a lot to us. It's always "Ohhhhhh-- I had no idea..." I'm bemused by that. What? No idea that....
I wasn't just making it up?? that we really meant it? or just that we really do see the choice as 'is this worth DD's life?' I have no idea, but that look-- in someone that I've attempted to talk to at length in an effort to work something out? It
angers me. Because it's crystal clear in that moment that they've just been blowing smoke at me, and I've been wasting my time and energy on someone that can't/won't/doesn't listen.
I've had that sensation again and again and again with DD's school over the years. Most recently at her commencement. (Which she wound up not attending, btw.)
