Wednesday, October 22, 2008

On playing the "disability card": Discuss

Barb over at Awalkabout weblog had an interesting post recently, Have you played the "A" card?, about her experience calling in the "autism card" to get a bit of special consideration and accommodation for her children. Barb asks, is this OK? Her conclusion is that it is, since without some special accommodation her children would miss out on great experiences, such as rides at Disney World. Another point Barb makes is that we parents have plenty to deal with and could use some help from others now and again.

Barb also wrote about telling others her child has autism in response to glares and nasty comments: "And sometimes you just drop it to make the complaining person feel like a heel. (We’ll add up the karma points later.)" Are there any of us who haven't been there, done that?

I had a recent experience where I didn't deliberately "hide" Sayer's autism but somehow it didn't get written down on a health form. Sayer's right arm was hurting last Monday, and since he broke it last spring I took him in to an orthopedic clinic to have it looked at. It was a new place since we had to switch from Kaiser to new insurance ( just when I FINALLY figured out the Kaiser system, but that would be a different post).

When I registered Sayer for services I mentioned to the clerk that Sayer has autism (by spelling it = little pitchers) but I didn't specifically say to write it on his form. Well, about 30 seconds down the hall to the examination room the nurse could clearly tell something was "off". I guess Sayer can "pass" as neurotypical at the playground but not in a busy clinic. Maybe something about trying to locate all the urinals on the premises?

As soon as we sat down the nurse asked something to the effect of, what's the deal? I mouthed the word "autism" to her and she seemed visibly relieved that I was up front; she said "Oh, that's so helpful to know."I got the feeling other parents try to somehow hide or not mention their kid's special needs. I really don't understand why; I agree with Barb that our lives are challenging enough so why not take a "pass" when you can?

The nurse jotted "autism" on Sayer's form, and while it still took an endless amount of time to wait for the x-ray results, we did get some special treatment. It turns out Sayer did NOT rebreak his arm but it may be a growth plate issue so to be on the safe side they opted to put on a cast. Ironically, they offered to put the cast on in the private examination room but Sayer was QUITE determined to go to the "big room" to get his red cast.

All in all, the 2 1/2 hour experience seemed like an eternity, but we survived. So, how about you - do you play the disability card with your children or try to carry on as if all is "normal?" Or does your approach and reaction differ by the situation? Please share your stories.


Anonymous said...

I don't think we "play the card". At least I can't think of when we have. We rarely use his handicap parking tag or park there unless it's necessary. We don't tell people unless it's part of a normal conversation, in a medically related facility, school, etc. That's not to say that we try to hide it either... I guess we carry on as normal unless the need arises.

As for letting those who are less than tactful know in order to make them feel "like a heel", heck yeah. I think they should learn not be so judgmental.

Anonymous said...

For me (this sounds strange), but it is 'no big deal'. It helps explain things for people. Brian knows he has autism (I am sure because he's heard me say it). His brothers know it. It's just another part of him, like my middle son is short. We all know it and are able to say it.

As far as getting special priviliges, I only use it in a situation that would make his experience easier (ie. the Disney Pass). I don't put Brian in a situation that would not benefit him in some way or would be a major hinderance to the others (ie. I wouldn't do something that was way out of his comfort zone, so that everyone couldn't benefit from that experience, I am thinking of cub scouts...we don't do activities that are not beneficial to him or would deter from the other boys' experience...I hope that makes sense).


Carol said...

I agree that lots of times it is a judgment call, sort of an art, really. We have to walk the line between overly protecting our kids and over exposing them to "inclusion" opportunities that are beyond their capabilities.

Anonymous said...

Hi, My son is 20. When he was small, there was much less about autsim in the media and most people saw him as different, possibly mentally retarded, and once mistaken for deaf. Because my son speaks very little and often has assistive devices around him, folks figure out pretty fast that he is disabled. If people stare I just say something like, hi my name is Pam and this is my son Geoffrey. He is 20 yars old and attends Columbia River High School, has a job two days a week at Chevron and he lives with autism. Being on the offensive: introducing ourselves at the first hint of a stare seems to help even the playing field, especially when I use people first language and share some stuff about him other than his autism. Plus now I know about half the city of Vancouver................... Pam

Carol said...

Interesting approach, especially since Geoffrey has "devices" - they can be a good "prop" for introducing our kids.

Sylvie said...

I was talking to someone about this issue -- sort of -- last night, that is, to disclose or not to disclose. Anthropologically speaking, I think it all comes down to issues of control. If you fail to disclose a reason why a child (or adult in your care) cannot control themselves in socially appropriate ways, or why YOU can't control them, then you find yourself the object of recrimination and blame. On top of everything else, who needs it? On top of that, if you DON'T disclose a disability, be it autism, tourette's, loss of limb (e.g. a prosthetic leg under your jeans), people feel "lied to." Curious, really... does this mean that they resent that you didn't give them a chance to behave more thoughtfully, and that by failing to give them a reason to comprehend your inability to be in COMPLETE CONTROL of everything, you fail in your social responsibility? I do feel that in a very individualistic society, the pressures to be in control, autonomous and responsible are unrealistically intense. (Although we might also want to consider that perhaps it is too much to expect, in turn, unequivocal understanding from others... they aren't perfect either!)

Carol said...

That's a great point, Sylvie, about control. We can never really predict how some of our kids will act and it can be that constant vigilance that is so exhausting. It's hard when others expect you to be able to completely control your kid's actions at all times -hard enough with "typical" kids!

" JUST US " said...

I admit I have used that card before. But I don't abuse it. Prior to William getting into school I had to go to the health dept to get a EED done.. there was a very large crowd and I got all kinds of stairs from on lookers. They were all wondering why my kid was acting up and crying. Once I made the announcement that he had ASD they all were quiet and the nurse even moved us up to the top of the list. You do run acrossed good hearted people out in this world that understand. If we didn't have to have a Eyes, Ears & dental exam for William to get into school trust me..I wouldn't have taken him.

Carol said...

Wow! How did you announce it; just told the waiting room crowd? You go, girl!

We had our follow-up doc app. for Sayer's arm on Monday and we were kept waiting in the waiting room almost an hour and he was pretty good until the end, and I told the receptionist supervisor that it would be in the best interest of their patients for him to move along to an exam room, at least.

We were quickly ushered into an "inner" waiting room that at least made us feel as if we made some kind of progress.