Thursday, August 21, 2008

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photo credit-kingnixon
creative commons license


In preparing for our recent cross country vehicular jaunt (i.e., vacation/holiday) I faced a bit of an ethical dilemma. The US National Parks Service offers a variety of different passes that are valid for admission to all national parks and forests. Besides these annual passes, it is also possible to purchase access for a limited period of time (usually 7 days) for a discounted amount.

I had been vaguely aware of the Access Pass from a local autism online group. The Access Pass gives free lifetime admission to the parks to those with permanent disabilities (along with up to 3 other people traveling with them in the same non-commercial vehicle). I hadn't thought about it much, but now took the time to consider it.

Was Buddy Boy permanently disabled? I have taken the tack of presumed competence, and thus proceed assuming he will continue in school, get a job, and be able to live independently. Would I be "giving in" if I had him labeled as having a permanent disability? Would I be lying to myself from here on out if I said I was presuming competence, but at the same time presenting a card that said that Buddy Boy was permanently disabled?

When we first knew that Buddy Boy was different, I had at least moderate resistance to placing any sort of a label on him. What advantage would it confer? And at what cost? At first I thought that the costs of placing any sort of label on him (ostracism, bullying, presumed incompetence by the schools) far outweighed the potential advantages (identity, and knowing he was not bad, just different). In fact, if we could have obtained educational supports for him without publicly labeling him, I might have continued to lobby for such an approach.

I have no problem with Buddy Boy knowing he is autistic. We treat it as a matter of fact thing around our house (much like we treat the fact that he joined our family thru adoption). I do wonder, though, about future implications of him having his name in official databases with a label next to it. Will it affect future employment opportunities? We cannot always predict unexpected outcomes from decisions we make.

In the end, my decision on whether to get an Access Pass for Buddy Boy was based on pragmatics. I first consulted the National Parks FAQ's regarding the pass. According to this site:

Who qualifies for the Access Pass?

The pass may be issued to U.S. citizens or permanent residents that have been medically determined to have a permanent disability that severely limits one or more major life activities.

A permanent disability is a permanent physical, mental, or sensory impairment that substantially limits one or more major life activities, such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. (emphasis added)


Surely Buddy Boy's ADHD and autism qualified him as having a learning disability (the powers that be certainly thought it severe enough to kick him out of his regular classroom and place him for awhile in a class for emotionally disturbed kids). As to whether his autism and ADHD will affect his learning permanently, the experiences of adults on the spectrum would certainly seem to bear this out. While people develop various "work arounds" as they mature, they don't magically learn not to be autistic as they get older.

That left the question of tracking him in a central database. A little asking around revealed that they don't record a Social Security number with the name, so there's no way that they can track these passes and merge them with other databases. Finally, as Buddy Boy gets older, it can always be his decision whether he uses the pass or not.

So we went with the pass. Got a letter from his doctor detailing his autism and its effects on his learning, showed up at the park and presented the letter, and got the pass with no hassle at all. It felt good to get something useful from my tax dollars, for a change.

So, first we used the pass to drive thru the Badlands


Then to visit Devil's Tower National Monument


And finally to visit Yellowstone National Park


Further photos can be found here.

16 comments:

VAB said...

Nice pics!

I went through the same dilemma in deciding whether or not to avail myself of a 6K tax deduction on the ground of having a disabled dependent. In the end I went for it. I did much the same mulling as you did but decided in the end that part of contributing to an accommodating society is accepting accommodation.

Ange said...

I'm just glad I'm not the only one who thinks about this stuff...although I probably wouldn't have even thought of the database issue!

Alyric said...

I loved the California National Parks. Oddly, I have a disability pass, but one considered for review in about five years time, so not permanent. A bit strange that the Parks don't have that option. After all, Buddy Boy may work out his own strategies and become less disabled over time, no?

Steve D said...

What an interesting topic.
I can roughly equate this to getting a disability pass for Disneyland. We have attended Disneyland more often than most, since we live just 90 minutes away by car.
Last fall was the first time we went and did not pursue the disability pass for J (which allows the individual and accompanying group to not wait in long lines). At the time, it felt like a good step. Now, I'm still feeling like the line-waiting is more of a burden on J thank it is on typical kids.

Having to make further decisions on that has been delayed by the fact that C has now been diagnosed with autism. Now we have a few more years of really needing the pass.

gbrettmiller said...

We went to DisneyWorld earlier this summer and had heard about the pass they have. Like you, Joe, I was reluctant at first to use it, for many of the same reasons. But in the end pragmatics won out. You can't imagine Z's joy at getting to ride Space Mountain three times in quick succession, having a chance to ride in each of the front, middle, and rear seats of the car. And Mission Space: Orange Team - now that was a ride. And, as Z said, "not scary at all."

Great pics, btw.

Sharon said...

Love the photos! You are lucky to have such beautiful places in your country.

And I'd definitely go with the pass. I take every discount/accommodation I can to make life that little bit easier!

Joeymom said...

We had a kind of similar debate about getting a disability hangtag for the car- get a temp or a permanent? Our doctor pushed for the permanent tag. Her reasoning? We don't have to use it if we don't want to or need to, and on days when there is trouble, we can. And we have no idea what challenges might present themselves in the future- he might be fine in parking lots for years, and then suddenly have trouble getting across a parking lot because of some unknown sensory issue. It provided flexibility to cover moments when we really need help, and just ignore it when everything is fine. And when he's grown, he can make those decisions himself.

r.b. said...

Wow, never considered it. Maybe I should...

Ben was placed in an ED classroom for 3 years before I figured out it was the ED classroom. I thought it was a "special" Asperger's class. Seems I did'nt know kids with ED were emotionally disturbed. I hate that word, disturbed. I find it "disturbing"...

Anyhow, maybe I should be looking into the advantages that I can. Thanks for giving me a new way of seeing things.

kristina said...

Will keep this in mind when/if we ever take a cross-country jaunt.

So many times there's debate about saying "autism" or "autistic" but saying either as a way to explain why Charlie was doing whatever might be drawing a puzzled look worked fine. Often on our trip I didn't have to say anything----people gave me the sense, they knew very well that Charlie's autistic. And then went about their business.

Thanks for sharing these pix!

Daisy said...

Tough decisions - the implications are huge. We finally got a disabled parking permit for Amigo, but it's due to his blindness, not his autism. We resisted because we don't want him thinking he "can't" handle things and needs it easy.

Maddy said...

I had similar dilemmas on the 'parking permit' debacle. In the end I never quite got around to it. Glad to hear that you're far more efficient than me.
Best wishes

Marla said...

I never knew such a pass was offered. I am glad to hear of this!

I am glad you used the pass. We certainly question things such as this in a similar, ongoing way. It never seems to get any easier in that respect. I tend to think when something as nice as that pass comes along....go for it!

Great pictures!

J said...

This is my second time visiting your blog. I'm the blogger who did a father's week back in june and will keep you in mind for next year.

Anyway, this is a Great Post! Like Marla, I didn't know about the pass either. I liked how you weighed all the pros and cons before deciding.

From the photos it looks like you had a wonderful vacation with plenty of breattaking views. Oh, the power of nature.

Club 166 said...

Thanks everyone for coming by. I read your comments almost every day, even though I don't reply myself often.

School and work have both been busy for me (and to add insult to injury, Blogger just ate my first attempt at this reply). Such is life!

Joe

kristi said...

I think the pass is wonderful. My little man has a hard time waiting for anything!

Bonnie D. said...

You know, on a lesser scale I dealt with this issue when we went to some various theme parks and friends in the Autism community told me to make sure we got a pass for Casey to move to the front of the line based on his disability. At first, it sorta made me a little sad that I could actually acquire such a thing, but also, a little sad that he even needed it at all.

I decided to get one, just in case. And we did use it. He couldn't stand in those long hot lines for more than 10 minutes without breaking down, and what was I supposed to do, not have him ride rides at all, just to save my pride? So, like you, we used the pass to the fullest.

I think sometimes our kids deserve a little "break" here and there. Why not take advantage! Beautiful photos by the way!