Saturday, April 02, 2005

Confessions of a Former Catholic School Student

I don't often talk about it, but I went to a Lutheran Elementary school, a Catholic middle/high school, and a Lutheran college. I'm a baptised Lutheran whose religious views are actually Unitarian Universalist.

However, I just wanted to say "rest in peace" to Pope John Paul II.

I remember sitting in masses at school, and we always prayed for "John Paul, our Pope."

But what I remember most was sitting in a very unusual religion class (the teacher made a very convincing argument that life here on Earth was actually Purgatory...she was only there one year ;-)) listening to a story from a Chicken Soup for the Soul book.

It tells of a young Polish man who couldn't bear the horrors of the Holocaust and helped save several Jewish refugees. The story ends by saying that he would eventually become Pope John Paul II.

Even though I don't agree with many of his more conservative views, the respect and dignity he granted other religions by going into synagogues and mosques impressed me greatly, and the reverence for life in a time filled with nothing but religious hatred and disregard for life was remarkable.

I wonder if I still remember how to say a Hail Mary....

May he rest in peace.

Thursday, March 31, 2005

One Last Thought

I've been watching the bitter debate about Terri Shiavo with some interest, as I said in a previous post.

Now that she has died, I see no end to the debate, but I just wanted to post a few last thoughts.

Most, if not all, of the people in favor of the removal of her feeding tube (I've tube fed a kid's not as scary a thing as people think it is) have said how they wouldn't want to "live like that."

So, speaking as the sister of an adult (officially, now, since he's 18) with a cognitive disability, and the teacher of kids with moderate to severe/multiple/profound disabilities, I just want to say...

...not a single one of those kids would ever say that their life wasn't worth living. Not a single one of those kids lived life in a self-pity ridden, anguished stupor that people seem to think that severe disability entails.

It's not really a cliche to say that attitudes are the real disabilities.

It's really not.

I've seen a child trying to tell me he was hungry getting so frustrated that he bit his arm. But once I realized what he was trying to communicate, and taught him to sign "eat," he doesn't bite his arm out of hunger any more.

Once my reaction changed -- once I understood what he was trying to tell me -- his frustration went away.

Yes, C. has challenges. Yes, he gets frustrated sometimes. But I've also seen him run up to a favorite adult, hug them, and try to kiss them (he can't pucker his lips, so he just kind of puts his lips on your face). I've seen him laugh when he hears music, or when he runs, or when we spin around together in fast circles.

I knew another little boy who had pretty severe physical disabilities but little or no cognitive challenges. I watched him, one day, try to tell the adult that was supporting him in school that his stomach hurt. He used his Dynavox (a communication device that's a touch-screen computer with voice output), facial expressions, his own signs, and body language to say "ow!" The guy with him was oblivious, and after a few minutes of this, I couldn't take it anymore, and went over and intervened.

Once I ascertained that M's stomach hurt, I told him I'd get E. to take him to the bathroom. He said, "Uh-uh." He didn't speak verbally often (most people couldn't understand it, due to the CP) but he had no (uh-uh) down pat.

Again -- it's all about the reactions of people around the person with a disability.

I saw, and understood, his communication -- which made him trust me rather than the guy who didn't hear his Dynavox saying "my body hurts" over and over.

Yes, it's a challenge sometimes to ensure that people with disabilities can communicate (I knew one young lady who would indicate pleasure by holding her head up and kicking her feet on her wheelchair trays) but the main source of frustration I have seen in all these kids, young adults, and adults comes not from the disability.

It comes from our reaction.

A life with disability isn't inherently not worth living.

Whatever you think of Terri Shiavo's decision (assuming that was her wish, as stated by her husband) -- that's what I wish we would all learn.

You know -- Tiger Woods would probably think life without golf is not worth living. Michelle Kwan would probably think the same about ice skating.

Do you feel terribly deprived by not going golfing today?

Life without walking, or life without verbal communication, or life without any number of things that people think disability steals -- it's not's just different.

My life is not less than Tiger Woods because I couldn't hit a golf ball accurately if my life depended on it. It's just different from his.

We all have talents.

C., of whom I spoke before, is very good at running, and has big, beautiful, very communicative brown eyes.

M., of whom I spoke before, has a fantastic sense of humor, and the most adorable smile you've ever seen.

A., one of my students this year, has perfect pitch.

Patrick, who has milder challenges than the students above, knows he has a disability. He knows it's called "Down syndrome." He knows that his girlfriend has Down syndrome, and that it was at least partially responsible for her needing brain surgery.

He knows that because he has Down syndrome, he has to work harder to make other people understand him.

While he may get frustrated sometimes (but then again, I'd be frustrated if someone didn't understand "absolutely-plain-just-the-meat-and-bun" and tried to offer me a cheeseburger too)...he is, in general, a happy guy.

Don't get me wrong -- the image of the happy-go-lucky person with Down syndrome is an oversimplification (an extra chromosome, no matter what people say, doesn't make you huggy) -- but he enjoys life, and he enjoys the people in his life that treat him as Patrick...not as "that kid with Down syndrome."

And, you know -- he has the whole staff of his Carl's Jr. charmed, along with several waitresses at Carrows, a checker or five at Ralphs, and servers at my Dennys and Dominoes.

He has more acquaintances and friends in the community than most adults my age.

You just ask him if his life isn't worth living.

None of their lives is unending torture, and they would disagree vehemently with that.

So whatever you think about the Terri Shiavo thing, just take a moment to try to realign your perceptions.


I know several kids that just want you to be their friends...and not to judge their lives based on what you think they're missing.

Wednesday, March 30, 2005

There are No Words

If someone hadn't died, this would be just hysterical.



Transparent Dock

So, along with a limited attention span for desktop backgrounds, I am very big on clean, uncluttered desktops. So, imagine my disappointment when I installed Panther (OS 10.3) and Transparent Dock didn't work in Panther.

I admit, I haven't checked for updates in a few months, though I was doing so every month or two before that.

Well, it's updated for Panther, and -- yay -- my dock is now nice and transparent. :-)

Okay, yeah, I'm a nerd....

Tuesday, March 29, 2005

New Blog

I've decided to separate the story posts out from this blog, as that's a whole different audience than the people who are hear to read about the trials of a sci-fan or to see pictures of Patrick's birthday.

So, SpooWriter's Storybits.

This one will continue, by the way; it's just a way to separate the many sides of spoo.


So, about 2 months before the actual demise of Call for Help, between when G4 and Tech TV merged when Leo wasn't hosting it, and when he came back for those 2 lovely months, Wil Wheaton (yes, Wesley, from The Next Generation) guest hosted for a while.

Now, I had a tremendous crush on him as a kid, seeing a lot of myself in Wesley (a nerd who often got along better with adults than other kids), and I thought it was cool that he was a nerd in real life.

I've been reading his blog for a while now, and he posted this today. :-(

I remember that day coming with our dog Poochie when I was dad had to pick him up and carry him to the vet because he was so weak. I know it'll come with my kitties someday, but right now, I just feel bad for him, and for The Bear.

Shameless Self-Promotion

I'm one of those people that gets very bored with her desktop image. On my PC, I have Webshots installed and it changes my wallpaper every 15 minutes. On my Mac, you can choose a folder to use for your desktop picture, and I have that set to change every 5 seconds, because it does a nice dissolve thing.

However, I've been using my PC a lot this week, making sound bytes for Patrick, and I've been completely stuck on one image, which you can find here. A description of it is here (it's the last one on the page, called "Hear Me.")

It's actually the story cover for this story. The guy is being tortured and the girl is trying to calm him down, is what it amounts to in the wallpaper.

Just thought I'd share...the thought just struck me as I was turning off Webshots, again, that this is very unusual for me...though it happens. Did the same thing after I made my favorite Lord of the Rings wallpaper, "The Bravest Thing."

Busy Busy

There's a new wallpaper and a new story at my website.

Only 10 more season passes to go, then the wish lists.

Then all the thumbs-up ratings I've done in the last who-knows-how long.

Monday, March 28, 2005

Tech Woes

So, it hasn't been a good technology day.

Forgetting all the rest of the technology woes that happened, including networking working only one way, wireless working better than the wired networking, and so forth... TiVo got amnesia. I even re-did the guided setup, and it still doesn't think there are upcoming episodes for any of my season passes -- unless I make new, identical season passes.

Then, all is well, and it sees the upcoming episodes, and adds them to the to-do list.

So now I get to re-make all 30 of my season passes -- not to mention, my wishlists, which disappeared in one of my restarting/cache-clearing attempts.

Sunday, March 27, 2005

Note to My TiVo

You do, in fact, have program information through April 11th.

So sayeth your own "System Information" page.

So sayeth your on-screen program guide.

So why, pray tell, are you convinced that no upcoming episodes exist for anything, either in the Season Pass Manager, or in the "Search by Name" sections?


Repeat with me: I do have program information. I do have program information.

So say we all. G'night.

Tech Tip

Except that the signal got too iffy, I almost posted a short note last night from my mom's house, using one of her neighbors' wi-fi.

The reason?

No password required, and a network name set to "default."

Good thing I'm not a hacker....