Yeah-- word to the wise, here, on 2e issues?
Never-- but never assume that someone who is a lovely person and has treated your child with dignity and care for years is incapable of being callous to the point of cruelty when push comes to shove. Never assume that having your child within earshot will curb anyone's tongue.
Don't
even ask how I know this.
A person who had spent an hour or two a week with my child from ages 5 to 9 yo as a coach/teacher and LOVED her-- or so I thought-- basically said (in front of her) that she was simply "too much trouble" to accommodate, that s/he was uncertain that we were "accurate" about risks, that even if we were, "other children" needed to be considered, that we could expect "no changes," and that we had to "decide whether or not this was something we wanted to do under those conditions."
This person also informed me (with my child standing there listening to every word) that "national counsel has advised us not to talk to you any more." S/he
did forward me the most jaw-dropping series of e-mails from said national counsel in which my child's disability was
mocked by a series of people to whom her medical information had been circulated (without my knowledge or permission). Apparently
that was so extreme that s/he even found the callous disregard rather shocking. National counsel told them that the organization was not bound by ADA. (DOJ disagreed when
I talked to them but whatever...)
Yes, this conversation was so unbelievably surreal that I kept wanting to pinch myself... I'm paraphrasing part of it here--
"But people are really attached to {practice}."
"Yeah-- but you do understand that this could result in a fatality, right?"
"Oh, of course. But people really like it. They're really used to it."
"Um-- you guys INVITED her to participate. Hounded us to, in fact. You knew about {condition} because you've known about it for years. We're really trying to work with you, here, but this is a risk that we and her physician just find unacceptable. I've not seen anything that explains the
need for this."
{blank stare}
"Can you explain to me why {practice} is integral to the activity?"
"It's always been this way. People don't have anything else to do. You have to understand that {activity} sometimes takes a long time. Spectators have to have something to do."
"Why? Aren't they here to watch? Besides there is an area for {activity} and it isn't clear why it needs to happen in the area where participants are."
"Maybe she could wait outside in the car, or something like that."
"What? Where she won't
inconvenience others?? Does she get her own special entrance, too?"
"Sure-- I think that we talked about that, in fact-- bringing her in and out the back way."
My DD
repressed this conversation-- I know this because she was utterly SILENT and STRICKEN in the immediate aftermath, and her relationship with this individual (which had been warm and reverent for years) was
never the same... though she claims that she "doesn't remember" this incident now. I
know that she does, however. She loathes this individual, and has no respect at all for the organization, the location where they meet, etc.
This was also the time when my DD began vowing to become a civil rights attorney. To
punish people like this. I'm encouraged that her response was ANGER and OUTRAGE, rather than self-loathing, at least.
The above is my personal standard for depraved indifference and callous disregard.
~~~~~~~~~~~~~~~~~~~~~~~~~ [/anecdotal horror story]
I bring this up mostly to note that there's "hostility" and then there's "HOSTILITY" with advocacy. On the one hand, this was unbelievable and it takes my breath away even five years later... but on the other, pretty much NOTHING that our school has ever tried even comes close.
It's also important to realize that to people who have never met your child-- they ARE just a professional problem to solve. It's not personal, and it's not even necessarily
bad that they feel that way... but it does mean that it's crucial to stick to facts and to stay away from emotion, because emotional appeals will get you nowhere, and may indicate weakness. This was a group of people that MOCKED my child's life-threatening vulnerability... people whose entire professional existence revolves around CHILDREN. Simply because I had the gall to
ask if they
meant what they said on their national website re: inclusion and disability, and pointed out several specific practices that placed my child's life in danger.
Expect lip service.
Expect that emotional appeals will get you nowhere.
Expect them to talk about you (and your child) behind your backs.
Even when you KNOW that they are
not seeking the same goals that you are-- TREAT them as though they are...
Consider every word, every letter, every phone call to be judged by outsiders in a court of law. Because THEY certainly are doing so-- at least if they are smart they are.
Escalate as SLOOOOWWWWWWWLY as you possibly can-- because collegiality among participants is nearly impossible to recover once you draw battle lines. If you bring in outsiders, that's escalation. It is ALWAYS unpredictable to do that.
Expect to document EVERY encounter with any of the participants, no matter how brief.
It's like cat-wrangling, at that point. They may not be
willing, but as long as you don't give them much wiggle room and make it clear that you won't go away, MOST of the time you can get what you need from them. Grudgingly. But recall that you'll get NOTHING that you don't have in writing, so be thorough as you write things up.
Also-- do have a back-up plan and a trigger point in your own minds. DO NOT share that with anyone else, but always-- always be prepared to walk away if the cost becomes too high. In the above situation, we had no choice but to walk away. Couldn't go legal/medieval on them (though DOJ certainly encouraged me to-- in shocked awe at just how bad and shameless those e-mails were) because of a school situation in which we were legislative advocates at the time.
School > extracurricular, so there we were. I've not forgotten, though, and I'd HAPPILY take a metaphorical flame-thrower to the entire organization, from top-to-bottom and coast-to-coast.
