Sarah Blake LaRose (3kitties) wrote,
Sarah Blake LaRose

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thoughts on devaluation of life with disabilities

I found another good quote on the issue of government involvement in right-to-life decisions.

We have heard from the Right how the Terri Schiavo case will lead to the government not only allowing people to be killed when their caretaker wants to, but will also lead to the government allowing people to be killed even if their caretakers want them to live.

The Left said that this is a slippery slope argument.

Well, in Britain they have just ruled that a baby will not receive the life-preserving care it would need if it stops breathing, even though the parents want their baby to live.

Are that many of us blind, stupid, or willfully desirous of the deaths of others? The very logic that says that they courts can determine if someone should decide if another will live or die (abortion, euthanasia) is the same that gives the government the right to decide for YOU, no matter what anyone else says.

I know we are not the UK - but the left wishes we were more like them.

UPDATE: The little girl's story is further revealed here at

Note 1: I was reminded at Ace of Spades HQ that the UK medical system is a socialist/government/single-payer health care, thereby giving the government the right to make these decisions. You know, the kind of health care the Democratic Party currently wants.

I despise terms like "left" and "right," but I will set my feelings about terminology aside long enough to say that I am aware that plenty of people in the United States do want socialized medicine. They seem to want it for decent reasons--there are many people in this country getting minimal health care because they cannot afford it. But it's also true that there will be a point when the government does something those people don't like. Unfortunately, I think that most people would like the government to step in and fix some problem or other--and then would get mad about "government meddling" when it doesn't work out the way we wanted it to.

Now on to baby Charlotte's situation... I sent a letter to the email address on the site. I have no idea if it will help or encourage. I hope so somehow. I am only one former preemie--and I was a healthy preemie compared to many. Many of my medical problems seem to have other causes, but in the grand scheme it sometimes seems that too much emphasis is placed on the cause of the problems when determining whether the problems are "worth treating" or the life is "worth living." I live with disabilities now, and my life is made worth living by the way I live with the life I am given. As I mentioned in my post on panic attacks, it isn't the kind of life I want, but there are things I can do that make it worth living. I certainly don't want to be dead!

This is a bit too close to home for me, and it's nothing I haven't thought about before. For a long time my prematurity history was something my family and I treated as sort of a badge of honor. Badges of honor are worth wearing. They also usually have another side, a very painful side for many people. It's sort of like veterans coming home from a war. Some come home disabled and very traumatized, and some come home seeming fine but realize later that they are, indeed, traumatized by the experiences they brushed off while in battle. Sometimes war traumas and injuries get aggravated by other injuries. And sometimes an injury activates a condition which was previously dormant.. I know two people with reflex sympathetic dystrophy, a chronic neurological condition which is diagnosed after an injury that may seem very minor fails to heal correctly.

I wore that "preemie" badge for years without thinking too much about its negative side. Childhood innocence enabled me to remain blissfully ignorant for a while. If someone said, "You're BLIND," in a way that made blindness sound like a bad thing, I said, "So what?" And I thought, "I'm still a person." My other disabilities were brushed off or undiagnosed during most of my childhood. I had medications for chronic respiratory illness and allergies, but respiratory illness was a way of life for me and I had no understanding of the limitations it could bring into my life.

As I got older, I learned that disability was often viewed negatively. I stopped saying, "So what," and started crying out inside when people made a negative statement about disability--and not just blindness. About any disability, and especially about the disabilities of people who couldn't speak up for themselves. Who are they to say...? These are people who think I can't feed myself because I can't see. What a gross underestimation of my abilities! So who are they to determine what a person more disabled than I can or cannot do? It's completely incomprehensible! "People say that everyone has something to offer," said a girl during a speech given before my high school speech class, "but not people who are handicapped or mentally retarded." What's your definition of "something to offer" then? In case you haven't checked the definition, I am "handicapped." Can you really look me in the face, acknowledge my emotional reaction to your words, and still say that I have nothing to offer? "Oh, I wasn't talking about you." But you were. You made a generalization that includes me. And if you weren't talking about me, who were you talking about? Give the person a description and a name and a face. Say it in front of her! See if it hurts her. Imagine yourself fitting that description and being told you have nothing to offer. Would you be hurt by those words? Sticks and stones break bones, and words really do hurt--they have the power to initiate death.

I also learned that perspective changes when a person becomes "more" disabled. The type of change is mediated by a lot of factors: the person's general attitude toward disability and the value of life, the availability of treatment and support, and the reactions of family and friends, just to name a few things. Fortunately, I had a strong understanding of disability and accommodations and a strong opinion about the value of all life, and I also had a lot of emotional support from family and friends and access to resources online where I could learn about what was happening to me. I've had to go through the process of learning and adjusting with every new diagnosis, and some things are harder to live with than others. But my commitment to life was made a long time ago, and it becomes a lot more fierce when other people devalue life, especially as my life becomes closer to the kind of life they devalue. It's easy to devalue Terri Schiavo's life and tell me I'm just paranoid when I worry about the impact of that devaluation. But already we have people pronouncing life not worth living if the person has xxx problem and can't see. If the problem really is xxx problem and not blindness, then why mention blindness? Just to dramatize the situation or make it seem that much more tragic? When will that line move? "She is disoriented and confused a lot, and her head hurts most of the time, and has all these bouts with bronchitis and pneumonia and she can't see and she can't hear very well. Who would want to live like that?" I don't want to live "like that." But dying is not an acceptable alternative. And we are already too close to this line for me to rest comfortably.


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