Gifted Issues Discussion homepage Forums Parenting and Advocacy is intervention here "helicoptering?" Or not?

On the advocacy side of things--

I'm probably hesitant to use the full-Monty approach for two reasons:

1) I've gone this route before, and the guns blazing approach always seems to burn bridges. The bottom line is that I do still want DD to have this chance, because it's one of the few things she has ever wanted enough to truly reach for it. We went the "guns blazing" route once before with something like that (where food SHOULDN'T have been an issue), and sadly, food allergy IS still a second-class disability in legal terms. We got shut down by a national organization's legal team who instructed everyone in the organization to never communicate with us in writing again... after they passed around my child's private medical information. (really not kidding-- that experience was so unbelievably evil that I can hardly think of it without shaking) Even with awesome documentation of discriminatory conduct, one cannot win. Well, you can. It's just that most people don't, OSEP/DOJ advisory letters aside. DOJ was highly sympathetic to us, but their hands were (mostly) tied. We opted NOT to go public, which was our only real other option.

2) My experience has led me to believe that academics in particular tend to require Kaa (Jungle Book) handling. By that I mean, let them think whatever they like, and suggest that THEY check the legalities of it once they paint themselves into a corner. They won't be budged if YOU do it, but if THEY take the initiative, and their own legal team tells them to stand down, they do. Plus, it doesn't burn bridges. It makes them take you more seriously in the future, too, without turning you into an "adversary."

If I thought for one instant that there was actual ill-intent involved, I would definitely be in there making trouble. Actively. I have done that. This doesn't feel like that kind of situation to me. I can't really explain it more than that. These are basically dedicated and decent people running a program that helps kids, and doing it short-staffed and on a shoestring budget in a state that has pretty much NOTHING to offer those kids within public schools.


But-- they need a lot of guidance before they can see outside of the box. And being engineers, it matters where the guidance comes from. Proper channels and all. This is how we eventually got such great results with the (twin organization director) before. When {director} tried to throw us under the bus, (seeing only liability and trouble), I fired back with "Really? How interesting. You should really go CHECK ON THAT." After a quick check with the disability office on campus, {director} came back with everything we'd been begging for and several things we hadn't. And an apology.

Similarly here. I know what their institutional legal counsel in the disability office will tell them. They don't know (obviously!), but it's probably who they need to hear it from. If THEY ask, they'll be perfectly willing to work with us in the future... but if we do (and they get TOLD before asking) then they'll hate us for "tattling" on them. KWIM?

Sadly, we do need goodwill. Nature of this particular beast.

I'm reminded of the line in "Recount" re: Even when you win, you still lose. I've been there, done that with advocacy before. I hate this kind of situation-- it's what makes a disability truly limiting. You can get used to the lifestyle modifications just fine. It's the perception biases of others that wind up being the problem.

If this is an organisation that will have a disability office, an option would be to call that, and ask them to handle it. [ETA: e.g., by them calling whoever's in charge of selection and reminding them that it would be illegal to base selection decisions on disabilities, and offering to give advice on what constitutes a disability, without mentioning any particular candidate's name, for example!]

I like ABQMom's approach. My immediate reaction is to guess that you're being far too negative and to doubt that this information will count against your DD at all - but I realise you may be n times burned, n+1 times shy and moreover, right. What is certainly true is that if they weren't going to use the information against your DD, you suggesting that they were is definitely going to put their backs up, which you don't want!

Another option would be to have ready a letter/email to send back by return if they do reject her, saying essentially, "It's so unfortunate that you asked these questions, because now it's so difficult for us to feel really comfortable that you rejected DD because there were better candidates and not because of her disability. To make sure that noone else ever feels this way, can you confirm that you'll change your procedures so as not to ask such questions?". And then wait...

I really appreciate everyone's thoughtful answers to this quandary.

It's really helping me to see outside of my own box. Polarbear and I both probably are fairly cynical, but when even friends and family tend to think of you as histrionic pains in the backside, and make no secret about sneering at you or excluding you... you don't need too many instances of getting applications "lost" or "waitlisted" before you figure out what is actually going on.

My favorite is the bait-and-switch. "Oh, well, we don't have that opening anymore" (the one that we told you not to worry about when we offered you a slot BEFORE we found out about your little problems...)

So yes, I'm probably highly sensitized to this kind of discriminatory conduct at this point. It's all about "don't go away mad-- but DO go away..."

The thing is, I was really hoping that DD could apply to this program purely on merit, without the taint that the PP mentions, because (having been hired because of my gender, or at least potentially so) it REALLY sucks to be that person who wasn't good enough without being the "token" (protected group member).

So emotionally, I'm kind of mad over THAT aspect of it, too.

That is such a healthy way of viewing this, Moomin.

That's how I've always tried to approach things, as well. It does take a certain maturity, though, not to go overboard into OCD-style perfectionism. I do worry about that some with my DD. She really does feel a need to be "perfect" to "make up for" the inconvenience of... well, being included like her peers.

Good news: DD forwarded me the e-mail that she got last week from the program office, and they are forwarding applications to mentors at the end of NEXT week, so no mentors will have seen the notes on her file-- yet.

I'm waiting for a call back.


ETA: Program coordinator wasn't really clear WHY I was objecting to this particular set of notes being included in DD's application, but I gently explained that many faculty will not be aware that life-threatening food allergy is covered by ADA/ADAA, and therefore having it gone would be best. It's a conversation that can be had in the event of an offer, but not appropriate as a selection criterion-- we wouldn't want there to be any QUESTIONS about whether or not it had been (illegally) used that way. With a mobility impairment, it would be far more obvious that such a thing would be strictly verboten. But that with a hidden and poorly understood disability like this, it's better to not have it out there to begin with.

*poof* the note is gone. I also seeded her head with why asking about "conditions" in the preliminary application may open them up here... but I don't think she was "getting it" very well there.

I'll probably return to the issue with them at some point, suggesting that they should make sure that this is compliant.

In our area, allergies, no matter how severe, have been officially and specifically exempted from disability status. It's a big problem, especially when people with very severe allergies are trying to claim expenses on their taxes... and there's a big push to get it changed.

Not that this really helps you any in the situation, but maybe contributes something to the question of whether allergies are thought of as disabling or not...

http://www.wrightslaw.com/blog/?p=58
The Office of Civil Rights, a division of the Department of Justice, has ruled that a history of anaphylaxis is a disability for purposes of having a disability protected by Civil Rights law. The wrightslaw link provides the information. OCR also has an memorandum on "hidden disabilities," in which it specifically uses life-threatening food allergies as an example. If you are in the US, a city, district, or state cannot define disability to exclude children with anaphylaxis/life-threatening food allergy.

I would probably wait with contacting them until after you know if she got in or not. I wouldn't want to look like a difficult parent that caused my daughter to lose the spot by contacting them too early.

But I have another question ... Since she is only 13, is it even ok for them to contact her and interview her like this without her parents' consent???

(we are not in the US)

Well, for whatever it's worth, I've encountered quite a number of people who openly sneered at the notion that even someone as profoundly impacted as my DD is "disabled" in any way.

The problem is that they have to WANT to do the right thing, and they have to be open to hearing it from a parent, and then maybe they can 'hear' that food anaphylaxis (or diabetes, or severe asthma, or a cardiac condition, or a seizure disorder, etc. etc.) is "really" a disability and requires them to make reasonable (or otherwise, in the event of K-12 ed) accommodations.

I don't predict that the program office will "get" that without going through the uni disability office, but there is NO WAY that the forms they have kids fill out are compliant, because the general rule (in my own experience) has been that you NEVER want the person making the hiring decisions to be aware of those things if it isn't a necessity during the interview/selection process. This isn't a situation where it IS necessary, and if the information is there, wow... how unfortunate that they are opening that door. Good thing that we aren't at all the kind of people to exploit that kind of loophole legally-- but they can bet that someone will eventually.

That's actually an honest appraisal of the practice, by the way. I am sort of like Don Quixote for this sort of thing at this point in my life. Because I know that for every applicant like my DD, there is only one parent like ME for about every 20 of those kids. Most parents just don't try to fight the system, even when it's wrong. I believe in paying it forward as a part of advocacy, though.