Oh, but we can’t have THAT. That’s SOCIALIZED MEDICINE. *ominous music* Yeah, it’s so fucking evil to take tax money away from bombing the shit out of people and hand it to a day carer for a kid with serious disabilities that would allow them to NOT overwhelm her parents’ lives and make hers better to boot.

God, I hate this place. This country anymore is just so goddamned evil. Evil choices like this are made when two adults who need to work full-time are forced to give a little kid care that would take four adults’ worth of work, or more.

I’d like to see someone investigate how much more common dilemmas like this are in evil, oppressive socialist regimes like FINLAND where people can expect a bit of help in situations like this.

I remember the emotional mine field my mother went through about *what other people thought about me and my life* while she raised me.

If, due to her difficulty raising me, her thoughts about my life had been pushed towards pinning a DNR to my braces….by badly written articles like this one….
…Nuff said.

But, hey, why would the media give us actual information like that when they can tell us yet another story about The Brave Little Disabled Girl Who’s Dying, and Isn’t It Sad? It would require them to actually find out some information and report facts about a human being and not A Saintly Little Disabled Girl Who’s Dying.

I’d still like to know what happens if you perform CPR on someone with a gastric feeding tube. Anyone know? If I Google, I only get Alzheimer’s websites, because they’re the only ones that include both “CPR” and “feeding tube” on the same page.

Yes, and particularly since the specific feeding tube Katie has is in the stomach (presumably what is called a gastrostomy, or G-tube), it would be very easy for a layperson (especially a child) performing CPR to dislodge this and possibly make her situation even more medically complicated.

The Trib article does state that Katie’s mother wants to be contacted first in the event of a choking episode and then paramedics will be on standby. This sounds to me like Katie’s mother has experienced this situation on multiple occasions and has a specific set of directions to give medical personnel at the school, not that she has given up on her daughter. Like you said, Mnemosyne, the article is so badly written (edited?) that it’s hard to tell exactly what is going on here and a lot of crucial details are not being given the reader, but it does not sound to me like her mother is saying, “Screw her, let her choke to death.”

CP can be degenerative if it’s accompanied (or caused) by an underlying seizure disorder. CP describes the symptom–damage to the CNS causing difficulties in voluntary motor control–rather than its underlying cause. If it’s worsening, I’d suspect that’s why.

– ACS

Why exactly aren’t you suspicious, when these people hold the power of life and death over someone who’s profoundly devalued in an ableist society? Just because many parents are loving?

Speaking for myself, I’m not suspicious because, again, the article seems to have left out enormous chunks of important information, so I don’t have nearly enough information about Katy, her condition, what she knows, what her parents have told her, even how they treat her from day to day.

The reporter has made a huge amount of assumptions about Katy, her family, and their lives, and you are making your assumptions based on an article by someone who doesn’t even bother to tell us how Katy communicates because s/he’s much more invested in telling the story of The Brave Little Girl Who’s Dying (TM), not the story of Katy Jones.

I’m not suspicious about the parents because the story is fitting into a very specific paradigm/stereotype about a disabled child so perfectly that I think the reporter basically constructed the story first and then crammed Katy and her family into the available space. I suppose I should automatically assume that every parent/guardian of a disabled child who is profiled in the media is abusive unless they can prove otherwise, but I guess I’m just too trusting.

Parents do have a lot of control over the medical care their child receives; that’s what “legal guardian” means. Parents don’t have the right to fail to obtain medical care for their children–sometimes, that’s considered neglect. They also don’t necessarily have the final say in what treatments their child receives.

In some cases, when the child is in great danger and the parent refuses life-saving or potentially life-saving treatment (say if they’re Christian Scientists who have religious objections), the courts step in and cooperate with the hospital to treat the child anyway. Some states, IIRC, exempt religious parents from prosecution if their child suffers as a result, but that’s not the same thing as the model you’re proposing here.

It’s a difficult thing to legislate, particularly since parents are usually laypeople and many parents can’t afford medical care, and since doctors are not themselves infallible, but you aren’t allowed to just let your child die of an illness.

Why is she not enough of a person to be consulted about the circumstances of her own death? Because she’s a child?

Yes. Because she’s a child. Parents have the right to refuse blood transfusions for their children, vaccinations for their children, and any medical care if, for instance, they’re Christian Scientists, no matter what the kid needs. When I was in school, the nurse couldn’t even give us Tylenol without parental permission. I don’t think this is right–I think it’s a pretty horrific example of the way children are treated as property and denied basic human rights, but there it is.

I find it interesting, and a bit disturbing, that despite the fact that the article is horribly written, obviously contains errors, misstatements, etc, so many people here are starting from the assumption that the parents are evil.

Replace “evil” with “have a lot of power.” Why exactly aren’t you suspicious, when these people hold the power of life and death over someone who’s profoundly devalued in an ableist society? Just because many parents are loving?

While true, it doesn’t cut mustard for me here. You can love someone and be completely wrong about what’s best for her.