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A Katy Jones link round-up

kactus

Let’s start off with Kay at The Gimp Parade:

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

I’m going to let disability rights bloggers, and bloggers who actually have cp, do the talking here. Please be respectful of their voices, and remember that they are the true experts.

Trinity at The Strangest Alchemy:

There’s something about that that just really creeps me out, as someone who is very well acquainted with authorities who don’t really care whether you know what’s happening to you or not. As Amanda at Ballastexistenz has pointed out over and over in blog post after blog post, there are many different ways to be aware of things and many different ways to have that awareness respected or disrespected. Since the only thing I know of this child is that she apparently likes school, it makes the most sense to me, not knowing much about the whole thing, to try to give her as many of those good experiences as possible. CPR and the like might eventually facilitate that, so why the DNR? Why now? She’s not dying.

And the thing that really bothers me is the statement that only the doctors and parents understand. Don’t the people actually living with illnesses (and does she have one? All I see is these choking fits, which are for some reason “worsening”, despite that all she’s described as having is CP) understand far more than Mommy does? Like I say above, as Amanda and others point out, there are lots of different ways to be aware. And lots of ways in which severely disabled people are assumed not to be aware when they actually are.

Which is particularly disturbing given that all they mention in this article is that she has CP. The same thing I have. Which does not affect cognitive capacity at all, yet they’re talking in a way that suggests she’ll never be aware enough to tell anyone whether she wants to live.

F.R.I.D.A.:DNR on Wheelchair for Second Grader with Cerebral Palsy
Ms Crip Chick: Are We Not Worthy?

How unfortunate.
That.poor.family.
Seeing people “worse off” reminds me how small my struggles are in the scheme of things.
(Thank you, dear Lord.)
But I don’t get it… if she needs help in the bathroom,
She should stay home
They have internet programs now, and books,
Why does she even come?
She’s a detriment to others.
What selfish parents.
Our children shouldn’t have to sit next to her.
This is sickening.
A tube! I don’t want my kids to watch her eat!
If a machine has to breathe life into her lungs,
Is she really worthy of this air?
What if she DIES in the classroom?
I don’t want my kids to watch someone die!
Why are her parents sending her to school?
Anyways, if I was them, I’d want to be with my daughter in her final days…

These are all comments made by people on a Chicago Tribune story that FRIDA recently posted about a young school girl in Illinois who wears a big yellow Do Not Resuscitate* sign on her wheelchair.

The article is a hard read, largely because it’s written with the assumption that if you have CP (cerebral palsy) you’re going to pass any second. Also, I have a very difficult time with these ”right-to-die” stories because although I believe in personal liberties, these particular cases are based on the idea that life with a ventilator or any assistive technology is absolutely horrific. They’d rather be dead than be me. The ironic-but-sad thing is that ventilators, powerchairs, sign language, learning braille, crutches, feedings tubes—for the most part, they make life BETTER for people. Life happens to be of higher quality, you know, when you can actually do things like breathe. Ventilators tend to help with that.

However, what was “harder” about the story were the comments that followed afterwards. (The statements above.) It seems like although there have been many changes for disabled people (like the fact that we can go to school), these things are reminders that disgust for disabled people is still prevelant.

bint alshamsa:

Before you claim that I have no reason to believe that it isn’t pity that non-disabled people feel for my brothers and sisters, make sure you take the time to explain this sort of hatefulness.

I really shouldn’t have gone and read that article and the comments people left. I am crying and I know I shouldn’t be. Everyone assumes that I’m immune to this sort of thing. I am, mostly. I mean, I’ve heard all sorts of ableist remarks in my lifetime, but what person with a disability hasn’t? I can usually spit out of all sorts of sardonic responses when this stuff occurs. Everyone has something that you can use to shoot them down if they really get out of line. That’s usually enough for interactions involving one person or a small group of people. However, I’ve never learned to be emotionally equipped to take the sort of hatred I just read without breaking down inside for a minute.

You know, people with disabilities really take a lot of shit off of people. We put up with the casual use of words like “retard”, “nut job”, “lunatic”, “vegetable”, every damned day. We generally don’t go around blowing up any nursing homes prisons just because we know how inhumane they are even though some folks have no problem with this sort of “direct action”. We put up with shitty housing, illegally inaccessible government buildings, and condescending store clerks every effing day. We are raped and told that it was our own fault. Yet, we still put up with that shit.

Shiva at Biodiverse Resistance–When is it wrong to save the life of a child?

Despite the title of the Chicago Tribune article being “Schools ponder role as child nears death”, there doesn’t actually seem to be anything here to explain why she is supposedly near death, apart from the vague “increased susceptibility to infection” (which is true for a lot of people with a lot of impairments, but doesn’t necessarily prevent them, with medical people who actually regard them as human beings with the same right to life as any other, from having a “normal” life expectancy). Katie has “severe” cerebral palsy; from how she looks in the photos of her on the Chicago Tribune website, i know several people with CP as severe as hers is, who were not expected to die at the age of 8.

It seems that with this case, just like those of another Katie and of Ashley X, Katie is being talked about as if she has absolutely no means of communicating her own wishes, or even of having wishes about her life – yet, unlike Ashley or Katie Thorpe, Katie Jones actually has a communication aid, as shown in the 4th photo, which the caption explicitly says “enables her to express her thoughts” – yet there is no indication at all that she has even been told about this “Do Not Resuscitate” order, let alone asked whether she would want it. (Also like those other 2 cases, it seems as if misinformation is being spread about the child’s impairment – which in all 3 is nothing more than cerebral palsy – in order to make it look both less familiar and more “horrific”, in order to justify horrific “treatment”, than it is.)

45 thoughts on A Katy Jones link round-up

  1. Pingback: A link to a Katie Jones Roundup « Questioning Transphobia

  2. It looks to me from the original Chicago Tribune story on Katy that she has far more going on than just “cerebral palsy,” even though that’s how it was (erroneously, I think) portrayed by the Trib reporter.

    Katie’s brain was deprived of oxygen before birth. She can’t walk, talk or do anything for herself. She is fed through a tube in her stomach and has an increased susceptibility to infection. Violent choking and coughing spasms have signaled a turn for the worse in her condition.

    and

    Two winters ago, Katie’s parents felt far less in control of their daughter’s fate. The child was near death every night for nearly three weeks. Katie’s increasingly severe attacks were a sign that her condition had worsened.

    That does not sound like CP. I’ve known people with CP. It’s not like muscular dystrophy, which is a progressively degenerative condition that could lead to very early death. CP alone typically does not cause the conditions described in this article. And it tends to be static, not progressive. People live their lives with it just as long as anyone else’s.

    Now, you could certainly debate the wisdom of putting a DNR on any child, even one with a terminal illness. But some of the coverage of this seems like it’s portraying the parents as wanting to snuff out this poor little girl simply because she’s “different” or difficult to care for, and it doesn’t sound that way to me; it sounds like they simply want more control over what happens to her during what could potentially be her final hours. Again, I’m not going to tell you I agree with what they’re doing necessarily, but I do think there is more to this case than meets the eye and it’s being obfuscated by bad journalism.

  3. Yeah, meowser, I think one of Kay’s points was that the article was filled with misinformation, especially about CP. Bad journalism around disability is certainly nothing new!

  4. Meowser, have you seen any indication anywhere as to what Katie herself wants? I think that’s important to ask. And then, when the answer comes up “no” like it did for me, the next question is–“why?”
    Why is she not enough of a person to be consulted about the circumstances of her own death? Because she’s a child? Because she needs a machine to communicate? Because she’s less of a person than those of us who don’t have her condition? Because it is sufficient for her parents to speak for her?
    There’s plenty of questions here. The people linked in this post have some answers–and they have a lot more questions than I do, and are worth listening to. I think, if anything, the people most qualified to speak about the dehumanizing effects of ability-based prejudice–and the erasing of voices of disabled people in favor of “experts” who do not know their lives from the inside–are the people who have themselves been subjected to it.

  5. I think, if anything, the people most qualified to speak about the dehumanizing effects of ability-based prejudice–and the erasing of voices of disabled people in favor of “experts” who do not know their lives from the inside–are the people who have themselves been subjected to it.

    little light, that’s why I always try to point out that the people actually experiencing the disability are the true experts–they may not be the ones writing the books and going on speaking tours and getting professorships, but they know the experience inside out. If that doesn’t make expertise I don’t know what does.

  6. Oh, absolutely, I totally agree. There were so many questions unanswered by that story, and the issue of the girl’s own consent and how she communicates with her parents was definitely one of them.

  7. Meowser, check out Trin’s post here, on Alas, A Blog:

    According to one of the commenters at my place (a med student) the issue is that some people with severe CP do have issues with choking. As she explained it, if these people need resuscitation over and over, frequently, their respiratory function will slowly deteriorate.

    (that is here: http://trinityva.livejournal.com/738531.html?thread=4074979#t4074979 )

    So it is in fact possible that she, unlike most people with CP, is close to death in a relevant way. But even if this is so, it’s really disturbing that they don’t 1) say it’s CP, or 2) talk about how this is different from many other people’s situation. (Like, say, mine. Urgh.)

  8. I don’t have to live with disability myself, so I need to be careful what I say too.

    But it bothers me that, as I noticed in the Ashley X case, so much of the sympathy seems to be with the parents and “what they have to go through,” not with the person herself.

    And no matter how long I think about it I can’t see a reason for putting a yellow sign on her wheelchair. If there is any excuse for what’s going on, surely the adults at school could be notified of the DNR without something like that being done? If emergency crews had to come to the school someone would inform them.

    (I don’t mean to sound like I’m endorsing them having a DNR in the first place in this case; I’m not, but I’ve never heard of anything like that sign.)

    And while it’s true that CP isn’t “progressive” it’s not uncommon for people with CP to end up with feeding tubes, even after spending many years without one. I’m not a doctor or a nurse but that’s something I do know.

  9. After reading the Tribune article, it sounds like calling what she has “CP” is seriously underestimating what’s going on. It sounds like her parents were basically sent home from the hospital with this child 10 years ago and told that she could die at any second, which is probably where the “no beeping” thing came from. Now she’s lived much longer than the doctors ever anticipated, and her family isn’t sure what to do, so they’re continuing on the way they started, trying to make her comfortable without doing anything they feel will be invasive. You don’t have a “hospice worker” for your average disabled child or adult. Hospice workers are the people who make terminally ill people comfortable.

    I think this reporter was trying to make the story that she (he?) wrote fit into a particular mold, so I think we’re missing a lot of facts and backstory about the specific case and why her family felt it necessary to put a DNR on her back, so I don’t even think I have enough information to make any kind of judgement about her or her parents.

    Is it ever ethical to put a DNR order on a child? If the child has terminal cancer, should treatment be continued to the very end, no matter what?

  10. But it bothers me that, as I noticed in the Ashley X case, so much of the sympathy seems to be with the parents and “what they have to go through,” not with the person herself.

    YES

  11. Wow, that poor kid.

    Since I am not a parent, nor am I closely acquainted with anyone who has CP, I’m coming to this story from the POV of someone who works in a school district, which I know is kinda from left field. I wonder how the teachers and administrators of Katy’s school are handling this, in respect to the obvious and natural questions the other kids have.

  12. Is it ever ethical to put a DNR order on a child? If the child has terminal cancer, should treatment be continued to the very end, no matter what?

    Trinity points out that these symptoms can develop with cerebral palsy, but to answer the above:

    Yes. Terminal doesn’t mean your life is over. It may mean you’ll die very soon, but it doesn’t always. Why let someone die if they do not have to – or want to – die?

  13. Okay, let’s look at this another way. Why was the DNR order, leaving aside its rightness or wrongness, advertised in this way? Does it serve Katie to have it on a large yellow placard on constant display on her chair, as opposed to a bracelet or necklace medical personnel are trained to look for anyway, or an order given to school officials discreetly? What’s the difference between approaches like these, which offer more dignity to the child and, yes, the parents in question–and the way it’s being done?
    Imagine any schoolchild with a large placard fixed on their back at all times declaring that they should not be resuscitated. What does that say to the child’s peers? Her teachers? I should think it would be almost as isolating as the medical condition itself. “Don’t get close to this one. Don’t invest time and effort and care into this one. Don’t make friends with this one. She’ll probably die any moment.’ How does that affect the way she’s looked at by school officials or instructors? How does it affect her own confidence or drive to develop? On a child, blared out like this, it’s not just a simple DNR: it’s a label separating out the worth of her life from the value of the lives of her peers. It’s like a cargo label, FRAGILE, THIS WAY UP. It’s dehumanizing, and it suggests to the reader that what they’re looking at–who they’re looking at–isn’t worth as much as others.

    I’m a firm supporter of the existence of DNR orders as a concept. But this particular application is deeply troubling.

  14. My computer hates me right now, so I am going at this based on what other people are quoting. I am also going to say that I don’t have any physical disabilities, though I do have loved ones who have some various disorders and issues.

    Does the DNR order on the back of the wheelchair include all sorts of medical information? To me, it would make sense to include some sorts of medical information there, the DNR, allergies, times/dates of medicines, that sort of thing- the things Katy wouldn’t be able to communicate herself. It is just a big DNR in brightly colored letters, that is a little strange. I am not sure if the other kids would know what the even means, though, as I am sure I didn’t back at that age.

    It seems as though we don’t know what Katy wants- but I am not sure we have reason to believe her parents haven’t discussed it with her in some sort of way. Could it be that the article just doesn’t include that information?

    And I am not a parent, but aren’t parents the ones who get to decide these types of things? If Katy’s parents- who have access to her medical records, and who know her well- make this decision, shouldn’t we support it? I am firmly in favor of autonomy, but children can’t, and probably shouldn’t have to, make huge decisions in regards to their health.

  15. I think this reporter was trying to make the story that she (he?) wrote fit into a particular mold, so I think we’re missing a lot of facts and backstory about the specific case and why her family felt it necessary to put a DNR on her back, so I don’t even think I have enough information to make any kind of judgement about her or her parents.

    Since Katy can and does communicate, aren’t you at all interested in HER feelings? Or do you believe that her parents’ feelings are the only valid concerns?

  16. And I am not a parent, but aren’t parents the ones who get to decide these types of things?

    Jenn, I understand (I believe) what you’re trying to convey here, but the instant I read your comment the voice in my head screamed, “NO!!!”

    This is so complicated, and because I am NOT the parent of a child with a disability I am trying to tread very, very carefully here. but I have to go with what rosehiptea said in #8:

    But it bothers me that, as I noticed in the Ashley X case, so much of the sympathy seems to be with the parents and “what they have to go through,” not with the person herself.

    I also defer to the critiques and issues brought up by bloggers who specialize in disability rights, so their blog posts should be required reading for everybody.

  17. The DNR order shouldn’t be anywhere visible. On a bracelet perhaps if the order is even warranted (and I question whether it is because we don’t know Katie’s particular wishes on this).

    Every time this kind of thing comes up – where parents discuss what they think is best for their children with disabilities – the press somehow fails to note what the children want, and it’s just assumed in some cases that the children will never be capable of communicating what they want. As far as I’m concerned, when that happens, it’s about the parents’ wants and comfort level, and not about taking care of their child in the best way possible, but about minimizing the impact that child has on their lives – and that discredits them to me as good parents.

    I mean, take Ashley X or Katie Thorpe – have they ever been taught any kind of FC? Has anyone even tried to teach them? If not, how is it possible to assess their mental states?

    And here, Katie can communicate, but is there any sign that anyone’s told her what’s going on, what decisions have been made, that she’s been made a part of these decisions that could end her life prematurely? No? Then why the fuck is this decision even being made?

  18. I just wanted to address what Meowser said about Katie’s symptoms not sounding like CP. As a parent of a child who has CP and also knowing a lot of other kids who have severe to profound levels of CP, those symptoms aren’t unusual at all in the more profound level of the disability. I know of two other kids that have the choking/coughing fits quite regularly and yet, their parents don’t have DNR’s on them. Quite the opposite. The parents spend hours on hours doing alternative therapies just to make them that a little bit more comfortable in their bodies.

    I’m sorry but I just cannot agree with Katie’s parent’s decision. And I cannot believe the spin that the media has put on the story . . .

  19. And you know, while I do agree there are some decisions parents can and should make for their children, the decision to let that child die when medical attention could save his or her life is not one of them. It’s the child’s life, after all.

  20. Hmmm. I have to be honest, it seems to me that children, disabled or not, aren’t given a lot of control over their own lives. Parents generally make medical decisions for their children, no matter if they are disabled. Good parents care about what their child wants, but not all parents believe that their children should decide for themselves. The attitudes about Katie reflect our society’s treatment of all children, not just disabled children. The problem is that we are all more ignorant and prejudiced about disability.

    “It’s the child’s life, after all”

    Actually, in our society it is not the child’s life. It is the life of their guardians. A child’s life belongs to society and whoever the law says, but not to the child. Also, what would you think if the child does want a DNR? Would you then say that Katie is suicidal, and cannot make that decision for herself? Honestly, do you really believe it is Katie’s decision, or do you only support her if her decision is to take any and all medical intervention?

  21. I know of two other kids that have the choking/coughing fits quite regularly and yet, their parents don’t have DNR’s on them. Quite the opposite. The parents spend hours on hours doing alternative therapies just to make them that a little bit more comfortable in their bodies.

    This is the part of Katie’s story that has me really wanting/needing to know more.

    Jacqui, as best you know, what is the choking and coughing about? Is it saliva slid down the windpipe?

    I do not understand why this is a DNR issue. How would this be different from kids with severe asthma? Other than the wheelchair, the CP, and the presumption that her life is somehow less worthy, I mean.

  22. I do not understand why this is a DNR issue. How would this be different from kids with severe asthma?

    As someone with severe asthma, I say, exactly.

  23. Kay, the spasticity from CP runs through the throat muscles making the swallow reflex difficult. You are right, it is the choking on saliva. A lot of kids who have CP also have reflux and are tube fed because they aspirate their food. The aspiration of food causes lung scaring which makes them susceptible to infections.

    I don’t like criticizing other parent’s decisions as I really do know how difficult it is to look after someone 24/7 – the expense, the exhaustion and the lack of support both monetary and emotionally. But this just is wrong. You can’t make those decisions for your child. Katie needs to have a voice.

  24. Pingback: Some tasty blogging for us all to digest - and things to think about in the New Year « Natalia Antonova

  25. I think the DNR is to prevent staff and students from performing CPR. Given that the child is in second grade, one can assume that all teachers and even some students are trained and will respond unless contraindicated. With the less visible items such as bracelets many well meaning people will start the CPR procedure.

    The student grapevine has already shared info on this kid. Sometimes it’s frightening how much the children know that the adult staff does not.

    I won’t speak to the medical issues as I have no information other than the article.

  26. A DNR has to be noticed to work. Most people won’t look for one on a bracelet, and if there’s ANY doubt about whether a DNR exists the default, obviously, is to resuscitate. (Better to get in trouble for saving the wrong life than for letting someone die.)

  27. A DNR has to be noticed to work. Most people won’t look for one on a bracelet, and if there’s ANY doubt about whether a DNR exists the default, obviously, is to resuscitate. (Better to get in trouble for saving the wrong life than for letting someone die.)

    Absolutely not true. School officials can be notified quietly and be aware of the situation. School personnel know all sorts of confidential things about students that don’t need to be announced loudly–as long as the officials in charge are aware of the situation that’s all that counts.

  28. Actually, in our society it is not the child’s life. It is the life of their guardians. A child’s life belongs to society and whoever the law says, but not to the child. Also, what would you think if the child does want a DNR? Would you then say that Katie is suicidal, and cannot make that decision for herself? Honestly, do you really believe it is Katie’s decision, or do you only support her if her decision is to take any and all medical intervention?

    I would wonder if she was talked into it. There’s a history of parents denying their disabled children access to medical care, and even killing their children (often with sympathy from the press and community, rather than what should rightfully be condemnation for murder). There isn’t really a history of disabled children clamoring to be allowed to die.

    This situation can’t be divorced from that context.

  30. And – sorry about the chain-posting – it is the child’s life. It is not the guardian’s life. The guardian is responsible for the child’s life, but that does not mean that the guardian should allow the child to die, or that the guardian has the right to allow the child to die. Parents do not have the power of life and death over their children, and disability should not grant them this power.

  31. I don’t know whether I’m qualified to speak on this subject or not. My almost 2-year-old daughter is just now in the process of having her preliminary diagnosis of cerebral palsy (ataxic) confirmed and we have just begun making decisions about how to help her join the world and have a complete life.

    And I’m horrified. I’m so sad for that little girl. I know that death is an outcome for some people profoundly affected by cerebral palsy, but that doesn’t mean it should be chosen for them. And I know, more and more each day, how complicated, scary, and difficult it can be to care for a disabled person. But so long as I know, as I do, or even suspect that my daughter has the ability to think and the capacity to find joy in the experiences available to her how could I even consider attaching a DNR to her?

    Maybe I’m not being fair. My child is certainly not as affected as the child described in the article. Still, I don’t know if she’ll ever be able to crawl or walk or speak. I know that she enjoys her life. Is that an assurance the parents of this child don’t have? If she is capable of some kind of assisted communication I don’t think so.

    Parents have a responsibility to care for their children and raise them. There isn’t an out clause if it’s just too hard or painful. Even profoundly disabled people can have remarkable lives, but only if their parents don’t give up on them first. The girl might die, but it isn’t inevitable, and if it is at all possible this kind of decision should be left up to her when she is an adult. She may die before then, but although it may be their legal right to make this kind of decision, I don’t believe it is their moral right.

    The school should step in and say that this is not appropriate. And yes, perhaps CPS should be called. Do disabled children not have the same rights as everyone else?

  32. Actually, in our society it is not the child’s life. It is the life of their guardians. A child’s life belongs to society and whoever the law says, but not to the child.

    Felicia has a good point here. In Katy, we’re seeing the extreme of how children are treated in this society, which is also the way that disabled adults are often treated (ie as children). Parents have a wide scope of what they are allowed to do to their children, and it’s pretty much anything short of permanent physical injury or death.

    Katy’s disability makes it stand out more starkly, but that’s really the issue: parents are allowed to control all aspects of their children’s lives up to and including the manner of their deaths. There was a case here in California where a man beat his young daughter until she was in a coma, and then tried to refuse permission for her to be taken off life support when it became clear she was brain-dead. It took a fair amount of legal maneuvering for the judge to be able to overrule him and take only the mother’s wishes into account, which were for her daughter to be taken off life support. Otherwise, he had the perfect legal right to refuse permission for her to be taken off life support, even though he was the one who’d put her there in the first place.

  33. I think this reporter was trying to make the story that she (he?) wrote fit into a particular mold, so I think we’re missing a lot of facts and backstory about the specific case and why her family felt it necessary to put a DNR on her back, so I don’t even think I have enough information to make any kind of judgement about her or her parents.

    Since Katy can and does communicate, aren’t you at all interested in HER feelings? Or do you believe that her parents’ feelings are the only valid concerns?

    If I thought her parents’ feelings are the only valid concerns, why would I have written “I don’t even think I have enough information to make any kind of judgement about her or her parents“?

    Again, after reading the article, it’s atrociously written and we have absolutely no way of knowing what Katy knows, what her parents have told her, or even what her medical problems are. We don’t even know the backstory of the “DNR” sign. In Katy’s current condition and with her feeding tube, what would be the medical consequences if a well-meaning but underinformed person started performing CPR on her? Given that stomach rupture is rare but not unheard of when you perform CPR on otherwise healthy adult patients, what are the risks of CPR on a child with a feeding tube?

    In short, I’m not entirely comfortable deciding on the basis of this poorly-written article that the parents are monsters who are trying to legally murder their daughter by putting a “DNR” sign on her wheelchair.

  34. 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. We don’t know if Katie and her parents have discussed the matter, but I’d argue that its best to start from the assumption that they have, rather than from the assumption that they haven’t. Heck, we don’t even really know the extent of the girl’s medical problems because the article is so poorly written.

    As far as the sign goes, on the one hand I can definately see the arguments against it, but after the way the way Terri Schiavo was treated I can see how it could be considered necessary. And, on seeing the photo, its hardly as bad as some here have made it out to be, and does seem to contain a lot more data than merely the DNR.

    I can appreciate that due to past (and current) mistreatment of disabled people that the tendency to think of the parents as villans is understandable, but I still don’t think its the right POV to embrace.

    DNR’s for minors, regardless of the cause, are a tricky subject because we are dealing with children and they are (quite rightly) assumed not to be fully competent. But I think its a mistake to start from the assumption that anyone ordering a DNR for their child is doing so from malice, misunderstanding, ignorance, or anything else. We, rightly, condemn the religious fanatics who refuse to allow their children to be given lifesaving medicine, but I see that as being a distinct issue from DNR orders.

    I’ll admit I’ve got personal bais involved. Because my father did not have a living will my family and I had to fight the hospital for two weeks to get them to remove his resperation after he suffered a stroke that left him brain dead. As a result of that I *do* have a living will, which contains the circumstances under which I’m not to be resuscitated.

    My point is merely that there seems to be an urge here to see the child as a victim of parents operating from unsavory motives, and I don’t think its reasonable to make that assumption based on the limited (and quite possibly inaccurate) facts presented.

  35. There’s a history of parents denying their disabled children access to medical care, and even killing their children (often with sympathy from the press and community, rather than what should rightfully be condemnation for murder). There isn’t really a history of disabled children clamoring to be allowed to die.

    This situation can’t be divorced from that context.

    yeah that.

  36. 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.

  37. 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.

  38. That’s not true.

    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.

  39. 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.

    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.

  40. That may be true, piny, but note that in the cases you cite, the government is required to step in–a rather difficult and complicated process which indicates that the default position is to defer to parents’ wishes. Further, more relevant to the original question (“Why is she not enough of a person to be consulted about the circumstances of her own death?”) the answer is still “because she’s a child.” When the government and hospitals are stepping in, it’s not because of a difference of opinion between the kid and her parents regarding her care; it’s because of a difference of opinion between the parents and the state.

  41. That does not sound like CP. I’ve known people with CP. It’s not like muscular dystrophy, which is a progressively degenerative condition that could lead to very early death. CP alone typically does not cause the conditions described in this article. And it tends to be static, not progressive. People live their lives with it just as long as anyone else’s.

    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

  42. 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.”

  43. Not to mention that until I was Googling around to try and find the other information, I never realized that there is such a thing as a “DNR with Full Treatment,” which basically means no chest compressions, but use all other means to resuscitate. Since Katy’s teachers have been instructed to pick her up and put an oxygen mask on her if she stops breathing, it sounds like she may have this kind of DNR and not what we usually think of as a DNR (ie no treatment at all).

    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.

  44. I’m a 46 year old with CP and my biggest issue here is with the Tribunes’ sloppy reporting.
    If it is the *choking* that has actually brought this girl’s parents to pin a DNR to her chair, then say so! And make it clear that there are other parents out there of kids with these choking problems…finding different solutions….This seems to put those with CP at risk of having an able medic decide we’re better dead than disabled, in part because of a subconcious memory of having read this article and deciding that anybody with CP is automatically terminal and tragic and, worse yet, not worth the medical cost necessary to continue their lives.

    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.

  45. You know what I keep thinking about — if we lived in a country with a decent amount of support for kids with serious disabilities that exhaust the hell out of two adults from 24/7 care, then maybe they wouldn’t have to make these goddamned evil choices. Christ on a fucking crutch, in any civilized country with a *shock and horror!!!!!!!!* socialized medical system (you know, like that hotbed of stalinist misery DENMARK or CANADA), the frigging parents might have enough help from the gubmint that they wouldn’t find their lives so completely demolished by having to do damned near everything themselves that they wouldn’t find themsevles at the end of their rope — which they must feel if they are making DNR noises about a little kid they’re been caring for intimately since her birth.

    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.

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