Friday, January 19, 2007

Inadequate use of technology costs lives

With great sadness, I just read a news headline Report: Frequent Confusion in Kim Case. James Kim was the man who died of exposure while hiking out to save his family. I don't know if a better search operation would have changed the outcome. However, the "what if?" must be agony for his family.

Unfortunately it reminds me of the reports I read about the rescue operations for Katrina. Lack of communication, lack of coordination, and lack of appropriate use of technology cost lives. We have the greatest software and networking companies in the world. We spend billions of dollars on the "war to fight terrorism." Our phone records can be tapped without our knowledge and consent? How about spending some money on producing systems that work for saving people from natural disaster? How about a system that tracks cell phone records for folks that are reported missing?

"Two Edge Wireless engineers acting on a hunch sifted cell phone records and found a text message for the Kims that had bounced off a cell phone tower near Glendale and had been received somewhere to the west of the tower. They notified authorities the night of Dec. 2, which focused the search."

Before this was done the authorities had a search area of 300 miles to search. I don't understand why a cell phone search wasn't part of standard search and rescue procedure. I also don't understand why this records search took so long when the family was reported missing on November 29. I can search all the calls I've received or placed in a matter of moments. But then it's not a manual process.

It's just incredibly ironic to me that a man who advocated the latest and greatest portable technology may have died because people didn't use technology appropriately.

The government didn't even rescue the Kims stranded in the car. A helicopter hired by the extended Kim family acted on a hunch. The Kims were lucky and wealthy. I applaud the Kims for using all the resources they had, but one's ability to be rescued shouldn't depend on wealth. It's shameful in the richest country in the world.

I don't actually blame the sherrifs involved. I myself have worked on disaster recovery, albeit for computer systems. I know that in crisises people rely on procedures; procedures they've already rehearsed. It's hard for people to think clearly. The procedures must involve using technology and coordination in ways that work. Otherwise many people get confused under intense pressure. And if this occurs rescuing computer systems, I can imagine how much more confused people get trying to rescue people. Much more pressure and also emotion.

I'm still very sad that James Kim died. And getting a better search and rescue effort for Oregon after the fact is probably little consolation to Kim's family. However, I'm glad that a relatively wealthy and well known individual was involved to give the state a wake up call.

Unfortunately I still feel that a failure in other states could still happen, because most of the individuals involved in Katrina were poor and uneducated. We really need national procedures to deal with disasters.

I read many many articles and blogs that blamed the victims of Katrina and individual officials. "They should have left when they heard the warnings." Well, if you don't have car, or enough gas to get out far enough, you'te stuck waiting for the government. Confusion also reigned and inadequate resources were deployed too late. It meant that pets or people in hospitals couldn't be transported. People had to choose to leave loved ones behind. Some people chose to stay. James Kim chose to leave to find help. It's easy to second guess after the fact. Katrina victims should have left. Kim should have stayed. But the right answer at the time wasn't clear. And these folks should never have had to face these terrible choices.

Another report states "The US is unprepared for another disaster." I don't know if terrorists will strike our airports or airplanes. I do know that people will get lost, and more major hurricanes will strike. I wish our country had good plans to rescue our own before we try to rescue other countries like Iraq.

Wednesday, January 17, 2007

Silence about Disabilities=Shame

I thought that attitudes towards disabilities were changing. I thought that what made things awkward, about talking my son was that for a time he was not only disabled but in danger of dying. The infant death taboo is a whole other post.

But when I read this article "What's the greatest challenge of having a daughter with autism? Telling people about it. , It makes me sad. As someone who grew up with a movement disorder, it's the same attitude my parents have. My parents occasionally talk about "my shake" at home but they don't use the proper term or say I had a disability. I don't actually shake at all. I jerk. My parents very rarely talk about it to others. Like the writer of this article, they're not ashamed of me but hope they can hide my disability from others. That people will only notice my good qualities.

Unfortunately, the world notices differences. As a child other kids called me names and people stared. They sometimes stare now. I don't have any problems with speech like Paige, but as a child I didn't know the words to defend myself. I grew up feeling ashamed of my disability. My parents occasionally told me they were proud of me, but I interpreted their silence as shame about my disability. Some people felt awkward around me not necessarily because of my disability but because there was this elephant in the room that we never talked about.

Parents think they're protecting their children by not talking about their disabilities, but really they're leaving their child unprepared for the world. For a time I was very angry with my parents.

Now with a son with an unrelated physical disability, I understand the awkward silences. I understand the looks of horror. Sometimes people's eyes fill with tears. Sometimes people spill their life story. It creates odd moments sometimes tender and sometimes so awkward or maudlin I wish I could just leave.

My son has a giant vascular tumor in his left arm that is currently in remission. The details are horrifying. He has multiple delays and his left arm barely moves. But those are his problems. I want people to see my son as the bright, social boy he is, and not his disabilities. However, his arm is a part of him as surely as his sunny smile.

For a time I stumbled around, lost in medical jargon. I didn't have easy words because my son has a disease that no one has heard of. No one understood me. Later, I realized I needed to keep it simple and use easy words like "tumor" "speech delay". Most people don't actually care about the details. They just want to have some understanding of what they see right now.

So I talk about it in a matter of fact way when things come up. For example the other day I was talking with friends about first haircuts. I said I put off cutting my son's hair for far longer than I prolly should have. I was afraid he might go through another round of chemo and steroids, so why cut his hair when it would just fall out? My friends have gotten used to this kind of talk and it's just part of the conversation.

I won't lie. I have lost some friends. Some friends who say "it's too hard." "why do I have to talk about this stuff?" aka my life or simply avoid me. You don't know who can handle the truth and who doesn't. It has surprised me who left and who stayed. But I would rather have friends who truly accept and appreciate me and that includes my son.

Everyone has good days and bad days. My bad days include trips to the ER. My good days include one of the happiest people I know. I wouldn't trade my son for anything. And so every day I model for him what I wish I had when I was growing up.

Tuesday, January 16, 2007

Little T is talking now

Sorry for my long silence. I broke my toe. I take Vicodin at night. I'd love to be House but I can't pop it without water. I can also only handle one at a time. Otherwise the tale about my toe is pretty boring except that I broke it tripping over my daughter. I have borderline osteopinia. A lesson to take one's calcium.

Also several pregnancies of friends and family brought up painful issues for me. I'm not ready to discuss them here in "the open." and frankly some of it is not my tale to tell. I may discuss it at a later time when I can separate more and talk exclusively about myself.

In the meanwhile my life goes on.

My biggest news is I have two bonafide talking kids now. Little T says two word phrases all the time but he remains laconic. He says one word if one word will do and then brings out another word if the first word isn't clear enough. With one exception.

For example he says "Songs" C starts singing to him. He says "Songs phone." He wants C to play him songs on his phone/mp3 player.

He says two three phrases. "Where Daddy/Mama go?" and "I love you."

I used to be the one he talked to least but in the past week he's discovered that talking is the way to my heart. He always has greeted me with "mama!" with great enthusiasm. Now he says "Mama, bus" "Mama, woo woo (his word for train)." Anything to get my attention. Daddy is not addressed in this way. Daddy is sometimes called for plaintively when not there "Daddy!" But Daddy is used for exacting requests "Where woowoo(train) plate?" If Daddy doesn't produce said plate he screams