The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie’s story and the larger issues. Comments everywhere have been… illuminating.
I haven’t written about this before now because these sorts of articles from the mainstream media — this one involving children, parental control of a child’s well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, “special needs” schooling, and “right-to-die” versus the right to not be coerced to die — contain so much information that is either misleading, incomplete or biased that I can’t think where to begin.
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.
Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I’m not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn’t discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article’s end:
Before the bus arrived, Beth Jones weaved a French braid into the school girl’s long brown hair, while Allie [Katie’s four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.
Besides, anything that beeps isn’t allowed in the Jones house.
“When we took her home from the hospital, where there were so many machines, we made the no beeping rule,” Beth Jones said.
The group hug part is completely untrue. I’ve had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It’s actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.
And the “no beeping rule”? There’s the real reason for the DNR right there. Better dead than using a machine that might make some noise.
I understand machines are scary. I get that because I’ve needed to make my own adjustments to them and also because I see it in peoples’ eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I’ll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.
I’d like to hear much much more about the Jones’ “no beeping rule.” Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie’s parents don’t feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die “peacefully” from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?
It’s not really the beeping, of course. And the answer to Trinity’s question:
Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?
seems to be that it didn’t seem relevant to the point of the article. Katie’s consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.
Further discussion can also be found at Wrong Planet, an online forum for people with Asperger’s Syndrome.
Cross-posted at The Gimp Parade
This shit makes me crazy. As a special ed teacher of “severely disabled” (state’s wording; not mine) kids, I see parents of kids with CP who knew nothing of disability culture be absolutely transformed by the love they have for their child and the value they see in their child’s life. They become some of the disability movement’s biggest advocates.
But they don’t get any notice or press, it is these cases of wackjob parents who never got over their prejudices and sterilize their kids or put totally misplaced DNR burdens on everyone (and it is a burden; and very unfair to ask school personnel to do nothing when a kid you’ve grown close to and who is happy and whose life has value is in a life threatening situation.) who get the attention. And the stories are filled with misinformation and slanted in a way to make it look like this is an actual rational and acceptable decision for a parent to make. A “no beeping” rule? That right there shows that these parents are off their rocker.
And I’m sick of this whole deal where feeding tubes/NG/G buttons are made to look like some severe, horrible form of “life support.” It happened in the Schiavo case and others. It is the simplist of things, it is a tool like glasses or crutches or a wheelchair or a diabetic glucometer. People make decisions about “not wanting to be on tubes” and have absolutely NO idea what they are talking about or how many people (who they may not even realize they know) use or have used feeding tubes to maintain their health. I’ve hugged plenty of kids who’ve used feeding tubes, what the H*ll are these people even talking about?
Anyway, some people mistake the disability as the enemy when it is more likely the lack of health insurance, lack of health care access, or the lack of acceptance that is systemic in its relentlessness in making being disabled harder than it needs to be. Others, like these parents, don’t even seem to try to be rational.
CP in and of itself is not terminal or fatal. There are some cases of secondary conditions that may cause death like seizure disorders or pneumonia. Some of these secondary conditions cause death not in and of themselves, but because they were treated improperly or not treated at all. Generally, though, those with CP can and do enjoy a long and healthy life.
This is just so fucking horrifying.
Kay, from what I’ve read it sounds like it’s not a matter of whether the child will die, but when and how. I know that CP isn’t life-threatening, but perhaps there are some other complications that weren’t mentioned?
There are very likely other facts and arguments that would lead to me disagreeing with the parents’ decision. However, I’m not seeing them here. After three paragraphs about the “no beeping” rule, you say that it’s not relevant anyway. This isn’t an argument that I can really follow.
Outlier wrote, “it’s not a matter of whether the child will die, but when and how.” Of course, that’s true of every single kid in her school… any of them could die tomorrow, all of them will die eventually, but apparently only this kid has a big sign on her chair about it.
The other thing to remember is that worst-case medical scenarios aren’t always credible. With disabled kids, a lot of ominous predictions are based on dangerously outdated information–from research done on institutionalized populations, without access to routine prevention and treatment for infections and such. The first chapter in Harriet McBryde Johnson’s Too Late to Die Young is about growing up with such an imminent death sentence hanging over your head. She turned 50 this year.
All,
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.)
No beeping? So if their child had kidney failure they wouldn’t do home dialsysis to avoid beeping in the home? WTF? That’s a real argument? Is a sign saying DNR even a legally enforceable document? I wouldn’t think so. I would think they would need a lot more than that, at least I hope so, otherwise anyone could put a DNR sign on anyone’s wheelchair if that person wasn’t able to remove it on their own for any reason of malice or otherwise and lead to that person’s death.
CP isn’t a terminal illness. Lots of folks have choking problems for lots of reasons including TD, that doesn’t give anyone the right to make them DNR without their participation in the decision making process and this is a child, she isn’t old enough to make that decision. People with ALS get to decide if they want to be DNR or be resuscitated and most of them are going to die of ALS, why are these parents allowed to do this? CPS should step in in my opinon.
Kay,
With all due respect to you and your situation, whatever that is (since this is my first visit to this blog, and I’ve never read anything else by you), I think your own reaction may be overblown.
I don’ t know about all of the errors and distortions that may be rampant in “these sorts of stories”, but this seems pretty well written and sourced, at least from a writer’s viewpoint. People and organizations are named, apparently actual stories are presented and without apparent hyperbole.
From the facts presented, it does seem that the child is or has been near death recently and frequently. (And putting aside the metaphysical argument that ‘any of us may be near death, and not even know it’, it’s pretty clear to me that everyone around her does know it. Maybe she has some sense of that, too.)
Though you and others here seem to pillory the parents as some kind of wingnuts who ‘just can’t be bothered’ with their daughter’s illness, what I read shows me a pair of loving parents who have been at the edge of the abyss. It seems to me that they made a conscious and difficult decision to obtain the DNR (which is not something done on a whim, and does need a doctor’s consent) and to work carefully with the school and town emergency services people to determine exactly what procedures will be followed as the girl’s condition worsens.
I don’t read the ‘no beeping rule’ as an irrational decision by the parents, at all. They’ve made a policy decision on treatment options, again, after a long and difficult progression through the disease and disabilities that their little girl has faced. When the article says the girl has been close to death, it’s not for me to judge that the writer is wrong or that the parents are wrong, if that’s what they conveyed to the writer. My first inclination is to believe that the parents, like most other loving parents–like me–want what’s best for their child, love their child, and would do anything possible to help and save the life of their child. The difference in this story, of course, is that they’ve gotten to the point where what they think is best for the child is–to let her go peacefully when it seems that her time has come.
You said yourself that you aren’t familiar with CP medical issues and effects on patients, and I assure you that neither am I. I expect these parents could give us one hell of an education, based only on what they’ve had to learn at first hand. I feel sorry for Katie, of course, but I also feel sorry for them and the rest of their family–and I give them the benefit of any doubt that they’re doing what they think is best, and the know a lot more than I–or you–would or could even want to know.
With that said, I was a bit mystified by the paragraph about the feeding tube. It wasn’t clearly written, and it seems like most readers have misunderstood what is there. Nowhere in the paragraph does it say that the feeding tube gets in the way of group hugs; nowhere. That’s not in it. I suspect that the ‘machine’ in question would be some kind of automatic feeding machine that ‘would get in the way of group hugs’, or maybe even a hair-braiding machine (unlikely, I know, but as I said the paragraph is ambiguous).
In any case, the story you linked to wasn’t really about Katie. It’s not a story about the little girl and her family, tragic as that story is, as much as it is about how the school and the town emergency services are coping and modifying policies and procedures to deal with this kind of treatment/lack of treatment decisions. You didn’t mention that the story also mentions–in one single sentence–that “[t]wo other pupils in the district have similar DNR orders.” I suspect that the reason we’re only reading about Katie is that her parents at least still have the strength to deal with the media to get this story out.
It must be an awful decision to write up a DNR order on a child who’s not even ten years old. It must be pretty awful, too, to be a teacher in a class, or an administrator or nurse in a school, where that child could–and in fact may be expected–to test that order at any time. The fact that the latest episode ended with Katie being brought home and met by a hospice nurse is telling. These people all know that her end is near, and from what I can see in the story they’re all trying to deal with that the best way they can, to let her go as peacefully and painlessly as possible, if that is possible.
Now, if you care to point out misleading information, bias, prejudice or other factual or policy errors, then please do so. I think you’ve missed the boat on this particular article, however.
The double standard here is this:
Suppose this girl was nondisabled in every way except that she had some type of problem that caused her to routinely get mucous plugs and need suctioning and/or oxygen and worst case scenerio, CPR. She talks, walks, plays with the other kids, is in every way an able bodied child except for this breathing difficulty. Someone with severe asthma, say. Would sticking a big DNR sign on her back be okay, then? Would there be no outcry?
I think there are circumstances where DNRs might be appropriate for children, I’m not sure this is one of them. The article does nothing to explain the so called “terminal” condition except to mention CP and breathing problems. Is she needing CPR every day or once a year or never in her life? If she was needing CPR every day, there was no other hope of treatment out there, and each time she was getting sicker and sicker…there might be a case for this (but still no case for a big sign on her back or a ‘no beeping” rule-weird.) But the article seems to say that ocassionally she has trouble breathing and many times it can be controlled with positioning, suction and oxygen. That doesn’t build a DNR case for me. Instead, they seem to build their case based on irrelevent factors to the specific health problem that may cause her danger. Whether she can walk or uses a feeding tube or give a group hug is irrelevent. These are value judgments about her quality of life.
When you look at adults with severe disabilities who are in a similar situation, i.e. vent dependent quadriplegics or folks with ALS, most of them are not going around with DNRs stuck on their backs (any?). So, I think it is fair to use those folks as a guide to guessing what it might be that this child would want rather than what decidedly biased able bodied society feels is a good quality of life. It isn’t that no child should have a DNR, but there is no compelling evidence mentioned in the article that this is warranted in this case. It seems much more likely that the decision was influenced by her disabilities and overall functioning, not by the specific health issue causing the danger to her breathing.
Penny, that argument is really in bad faith. You know that plenty of older, seriously ill people have DNR’s. That’s the relevant comparison.
Um, I didn’t say anything at all about DNRs, so I’m not sure what bad-faith argument you mean.
“With all due respect to you and your situation, whatever that is (since this is my first visit to this blog, and I’ve never read anything else by you), I think your own reaction may be overblown.”
Chris: I’d recommend you read Kay’s blog, and the other blogs of disability rights bloggers and activists, before you decide whether our response is overblown or not. There are several posts on this issue linked in the original post. I’d suggest you read them, and then decide. You may well think we’re all wrong, and… your mind is your mind and your opinion your opinion, but it will be a more informed one if you have more information about the disability rights perspective and where it’s coming from. (I’d also recommend reading Ballastexistenz as well — in the blog posts of mine that Kay links to here you’ll find a link to one particularly relevant video of hers.)
Re DNR orders: I have no idea if a DNR order is appropriate in this child’s case–the article didn’t give enough information to say one way or another. In general, DNR orders are appropriate when either there is essentially no chance of an attempted resuscitation succeeding, as can happen when cardiopulmonary failure is due to some other irreversible illness or when if the resuscitation did succeed, there would be essentially no chance of the person involved ever regaining consciousness or leaving the ICU. In other words, a DNR should be issued only if a resuscitation attempt would be futile. I don’t know if that is true in this case–it doesn’t sound like it, but making medical predictions from newspaper articles is not possible. What is clearly not appropriate is sticking a big sign on the poor kid’s back. Couldn’t they just leave an order with the principle and school nurse?
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Trin,
Thanks for your suggestion; I may take you up on it. I may not; no promises. I wanted to be clear that my comments were a reaction to one critique of one newspaper article, and were (would always be) germane in that limited context. I think the criticism that started this discussion was misplaced.
I still maintain that the headline of the story was what the story was about, which was not so much the tragedy of this little girl and this family, terrible as that is, but the policies and procedures which this town (and by extension other towns across the country) are having to work out to deal with this new facet of modern living.
Can’t we at least be glad that our society has made the progress to see that Katie is *in* school, *with* her peers and has some apparent fair quality of life–especially including the love of her family? She’s not being warehoused, not being kept at home or in a hospital bed, and she hasn’t been abandoned by her family or teachers.
The scope of the story was far too limited to form any kind of valid criticism of her particular medical treatment or her family’s response to her current condition. Yes, they are central to this particular story, but the story’s not really about them. I think it was a pretty good article, for its scope.
As to the DNR order taped to the wheelchair, yeah, I think that’s a bit over the top. We know how cruel kids can be, and once the other students learn what that means, I hate to see what some–not more than one or two, I’d imagine–would do with that knowledge. On the other hand, the family has gone to great pains to see that the response to a medical emergency is in accordance with that order, so they don’t want to see some well-intentioned rescuer remain ignorant of it.
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“Thanks for your suggestion; I may take you up on it. I may not; no promises. I wanted to be clear that my comments were a reaction to one critique of one newspaper article, and were (would always be) germane in that limited context. I think the criticism that started this discussion was misplaced.”
Chris,
Understand that you have the luxury of not paying attention, of maybe thinking about this and maybe not, of seeing my suggestion as something to accept or reject at your whim. For people who are actually living with disabilities, that luxury is not always present.
Also, Chris, there is relevence to the context that this all goes down in, which is in a society where society views death as preferable to disability and denies support and healthcare and rights to people with disabilities on a routine basis. The historical and current context that people with significant cognitive disabilities face is quite horrid.
You can’t just elect to prick this story out of that context as if it doesn’t matter. For example, if there is a black man on trial for a crime…maybe he commited it and maybe he didn’t, we don’t know. But if the judge, jury, lawyers and media surrounding the case are looking at it prejudicially, it presents an unfair situation and he will likely not get his rights granted and justice will not be served. Whatever the evidence shows for this particular black man on trial, you cannot pick it out of the entire context of historical and current discrimination against black men in our criminal justice system. Likewise, you cannot look at the facts (as we know them from one article) in this case and separate them from the vast violation of the rights of the disabled who are in these situations. If you do read up on disability rights, you will find that people are being falsely imprisoned, denied healthcare and basic rights, and in some cases literally killed for the crime of being disabled. Is that the case in this situation? Perhaps or perhaps not. But people like Kay are right to be suspicious of motives and these things do need to be brought to the forefront and discussed.
And if Katie dies because of a DNR order when it would have saved her life, I would say that it would be the case in that situation.
Yes, we can look at what Katie does have and say “Yay,” but I don’t see the point in ignoring everything else people with disabilities have to deal with at all ages, or in acting like everything else matters less because some progress has been made. Often, that progress isn’t enough, not yet. Neither is being grateful for what you have when what you don’t have can be critically important.
Chris, you are writing from an able-bodied bias. What are you doing to correct your biases and prejudice? You freely admit you have no knowledge of “these kinds of stories” or of CP in general (you erroneously call it a “disease”; it isn’t)– yet feel totally qualified to comment for several paragraphs as if you do. What else would you comment on without having a clue or prior knowledge? You are at least familiar with the arguments and history of groups like NOT DEAD YET, correct? (If not, why aren’t you?) For instance, you use the word “tragedy”–a hot-button word for disability activists. (Next, you’ll be calling Obama “articulate.”) You arrogantly proclaim that disability activists here, who have been writing about such situations for DECADES, are wrong. How long have you been studying disability rights? If the answer is less than a year, the proper role for you is to listen and learn from the people who DO know. The thing about disability, though, is that able-bodied people think they are qualified to comment–this is part of the patronization and condescension directed at disabled people that has ALLOWED this whole situation with Katie to get to the point it is. WON’T ALLOW BEEPS IN THE HOUSE, MY ASS. I doubt you would even be as sympathetic to parents who didn’t allow their able-bodied teenager to have a cellphone in the house…
Kay has written about a lot of these medical situations, and she is describing the BIAS in the accounts… the similarities that are always there. You announce, definitively, that she is wrong. And I would ask, how do you feel about Katie’s feelings? How do you feel about the fact that we are never told what her feelings are? Do you care about that or is that of no consequence to you? Do you care about the feelings of able-bodied children?
Translation: Can’t you people just be glad we are educating you and stop agitating for the right to live and the right to autonomy? I mean, who DO you think you are?
“you will find that people are being falsely imprisoned, denied healthcare and basic rights, and in some cases literally killed for the crime of being disabled.”
Yes. Here is a list of murders and other creepy deaths. It’s out of date, I wasn’t updating for a while. (Anyone who can send me more news stories, please do.)
http://trinityva.livejournal.com/tag/pwd+deaths
Lisa Harney writes:
“Neither is being grateful for what you have when what you don’t have can be critically important.”
Unless I am reading this wrong, I think you are also writing from able-bodied bias. The assumption being that what people with disabilities lack is significantly detrimental to their quality of life in which to make them choose death over living.
Over and over again, people with disabilities in these situations are saying, screaming!, I want to live. I am okay with my quality of life. Don’t make these decisions for me and don’t tell me that it is better to be dead than disabled.
I am disabled and I would suspect that some or all of the people commenting here in support of the OP are disabled or very close to the community in some way. I am deafblind with kidney disease and my husband is a C7 quad. And we want to live. We are happy with life and we are fine with what we have and what we don’t have. We know lots and lots others, some with significant physical and cognitive disabilities, who are also perfectly content with the body they live in, even when it is a pain in the ass and sometimes it is. We want to live. We are happy. Why don’t people listen to us instead of assuming FOR US what we should want and what factors make us have or not have a good quality of life. Respect, access, healthcare, being valued, those kind of things give us a good quality of life. Not DNR stickers on our backs or people who are bothered by our beeping machines or people who don’t seem to even know that a feeding tube ‘machine’ is nothing more than an infusion pump, very similar to an IV infusion pump, and in no way would impede physical contact any more than having to move one small tube out of the way.
Believe me, there is no lack of focus by others in any facet of our lives on what we don’t have and how critically important that is. We have been trying to get people to actually recognize that we like and want to keep what we do have. And we want to be valued and appreciated for it, and we want to have the right to live because of it, no matter how small or unimportant you might see “it” as being.
My computer could not access Amptoons today, but I’ll try to catch up on comments directed to me. And will continue to when my computer lets me.
outlier (comment#3): Yeah, there must be some aspects of Katie’s situation that are unexplained because CP alone doesn’t explain it. That is one thing that bothers me greatly about this article. People with CP don’t need the public thinking they might all drop dead. The ignorance creates public opinion that often gets voiced as “well, they’re going to die anyway…”
After three paragraphs about the “no beeping” rule, you say that it’s not relevant anyway. This isn’t an argument that I can really follow.
I didn’t say the rule was irrelevant. I said it’s not really what they mean. What they mean, I believe, is that they will accept no life-saving or even life-improving machine in their lives when it comes to Katie’s care. I suspect like most everyone else here, they do, in fact, have cellphones and microwaves and other things that beep at them all the time.
Chris Nelson (#7): On the DNR — Does it need a doctor’s consent? I don’t think so. I think the healthiest person alive can sign one for whatever reason — fear of paramedics, or whatever. What it does usually need is a medical facility of people to heed it. It’s not legally binding to require the second grade teacher, for example, to stand by and do nothing for a choking student because her parents wish her to stand by and do nothing.
When the article says the girl has been close to death, it’s not for me to judge that the writer is wrong or that the parents are wrong, if that’s what they conveyed to the writer.
I don’t doubt the child has been close to death or that there is a problem with her breathing occasionally. I believe, as the article indicates, that this problem may be becoming more severe. But we don’t know why. What if it is a swallow problem and saliva runs into her lungs until it clogs them? What if she doesn’t have the capability to cough up the normal bits of gunk we all have and most people clear without trouble everyday? It may be something else, but if it is those things, then a trach that would allow suctioning of her windpipe several times per day could fix that. Depending on what the cause of her choking or not breathing is, we may get into an area I know very well.
The difference in this story, of course, is that they’ve gotten to the point where what they think is best for the child is–to let her go peacefully when it seems that her time has come.
And with more information, I might even agree that their decision is a rational option. It might be more “peaceful” to die from choking than being resuscitated and getting a broken sternum from the CPR before dying anyway. But again, is she choking on saliva that might be lessened with a medication? Is choking to death more peaceful than taking a pill twice a day and living?
And what I am saying clearly here is this: I do not trust these gaps in information. I do not trust that the mainstream media, generally, is free enough of disability prejudice and ignorance that those gaps could all be filled with reasonable decisions and situations. I suspect that someone with some serious disability experience would have written an entirely different article than this one, using many of the same facts but presenting a significantly different picture of Katie, her family, the school district, the medical experts, and the decisions being made.
Nowhere in the paragraph does it say that the feeding tube gets in the way of group hugs; nowhere. That’s not in it. I suspect that the ‘machine’ in question would be some kind of automatic feeding machine that ‘would get in the way of group hugs’,
Yes, I understand the article to be saying that the machine that can be set to regulate feeding through the tube gets in the way of group hugs, so they refuse to use such a machine. I was addressing that lie. The machine I have used (and do not currently use but still have sitting on a pole beside my bed) is what they seem to refer to. It does not get in the way of group hugs. That is a falsehood. Should I choose to, I could hook my feeding tube up to the machine this evening and have wild sex with several people while getting my nutrition. Unless I wanted to do somersaults, the machine and the tube between me and it would not be in the way. Several things about me make that scenario unlikely, but the feeding tube and the machine would not get in the way of intimate body contact.
You’re right that the story isn’t about Katie. Except that it is. Even though the topic is this school issue of children with extreme and unusual circumstances being a policy difficulty for public schools, Katie’s life story, her most dire moments, her parents thoughts, and her ultimate fate are all detailed here. The only thing missing is what the eight-year-old thinks. And the article implies that she doesn’t think anything about it at all when it says she can’t do anything herself. You have to dig to that fourth photo at a different link to learn she communicates via a machine. And that, imo, is a grievous crime of this article. The one person this all affects more than the rest of us is not only not given a voice, it is implied that she does not have one.
Chris Nelson (#14): Can’t we at least be glad that our society has made the progress to see that Katie is *in* school, *with* her peers and has some apparent fair quality of life–especially including the love of her family? She’s not being warehoused, not being kept at home or in a hospital bed, and she hasn’t been abandoned by her family or teachers.
We could be glad for all that, except, if you read comments at the Tribune site following the article and in other places as well, you find a significant number of people arguing that Katie has no right to be in public school. I am 39 and am the first generation of American students in wheelchairs who were allowed to join regular schools and classrooms even when the wheelchair was the only barrier to inclusion and not any special needs beyond getting in the door. I don’t think we can afford to just be glad, unfortunately.
Amptoons was down for about an hour or two today, due to our server being overwhelmed by 17,000 or so people coming to see the “MPAA bans a poster” post from digg.com.
17,000 or so people
Holy crap. Well, that explains it then.
If so, I apologize. What I meant by “what you don’t have” was in regards to stuff like
Not disabilities themselves but how people with disabilities are treated. I apologize for not being clear, and I apologize if that’s still coming from an able-bodied bias.
I’m totally against Katie’s parents giving a DNR order on her behalf. I think deciding it’s okay to let her die because they’ve made decisions about her quality of life is appalling. I think it’s horrible that parents treat their children with disabilities like this. I completely agree with
and
The bolded part is, again, what I refer to when I say “what you don’t have.”
I’m also trying to post in Kay/Blue’s support.
Sadly, my post is past editing, or I’d edit the dumb part to not sound dumb. I mean, I really needed to say that better.
And also, “what you don’t have” is really a poor way for me to say it. :(
Lisa Harney:
Ok, Gotcha. Sorry I guess I was way off and confused. Thanks for clarifying.
Kay, the way I interpreted the “no beeping” rule was that the parents didn’t want machines that constantly beep (for no reason) around Katie. I inferred that Katie had spent a lot of time in a technology-heavy setting, and they wanted her to have a break from that.
That said, it was one brief mention at the end of the article. There might be a whole lot more to it than that, it could have meant something different than what either of us are guessing, it could have just been a good sound bite and not even true for all we know.
So, when you use this single statement as the point on which the essay turns, it loses me. That is all I’m saying.
Also, I’d guess that most of the people reading this are not familiar with the disability rights perspective or with your previous writings. How familiar should an audience be before they can respond critically to your writing?
Penny:
Outlier wrote, “it’s not a matter of whether the child will die, but when and how.” Of course, that’s true of every single kid in her school… any of them could die tomorrow, all of them will die eventually, but apparently only this kid has a big sign on her chair about it.
Right, I know what I wrote above, but that still doesn’t explain why you think “that plenty of older, seriously ill people have DNR’s” is “the relevant comparison,” but describing a kid in the context of her same-age peers isn’t?
Nobody’s really disputing the concept of a DNR when adults can choose them for themselves, fully informed, no problem there. With any kid, it’s legally the parents’ decision, in most cases, when to refuse any medical treatment, including life-saving measures. But that doesn’t mean the parents have to publicize their decision with a prominent sign on the child’s person. That, to me, crosses all kinds of lines about dignity, autonomy, labeling, privacy… Makes me wonder if it’s an exaggerated response to past frustrations with the school program, but even then, it’s putting the kid in the middle of an adult struggle, unnecessarily.
Because older/seriously ill people are generally close to reaching their expected life spans and are vastly more likely to require resuscitation for one reason or another than the average child. Where Katie’s symptoms put her on this spectrum is debatable, but that’s why I was making the comparison.
Kay can reply to your question herself, but IMHO–if someone is responding to a post written from a disability-rights perspective, I think it’s reasonable to expect them to have a clue about what that means.
It’s like responding to posts about racism and sexism without any knowledge of the Civil Rights movement or the feminist movement, and what has come before. (Of course, I realize people do this all the time… but isn’t it just very annoying and arrogant?)
It seems like Kay, Trin, Alison, Penny, etc. always have to do Disability Rights 101 every time one of “these sorts of stories” comes up, and I am heartily tired of it. Why don’t you have a basic understanding of the issues? Do you know about feminism, gay rights, et. al.? Are you a progressive or not?
Get with the program, please. Stop making people justify their entire political movement and first principles.
I’s like to address only the functionality of the DNR, and not the morality of it.
Problem is, a DNR isn’t worth a damn if it doesn’t get followed. If you really want it to work, you have to make it visible enough that people will see it BEFORE they do anything. As I tell my clients (elderly in my case, when I draft their wills, etc), a DNR in a drawer is just like having no DNR at all.
Bracelets are all well and good in a setting where you assume that people will remember to check for them. But in real life, they won’t generally stop well-meaning people from starting CPR, etc. Hyper-visibility vastly increases the likelihood of having a DNR followed.
In fact, the reality is that few people would bother checking a young girl for a DNR (as opposed to an elderly person), so additional visibility is even more critical if you want it to work. Obviously folks here have differing opinions on whether the DNR should exist at all, but if the goal is to have the DNR request met, the sign may be necessary.
I think it’s reasonable to assume that on *this* blog, in *this* setting, people will probably need more disability 101 than they need feminism or gay rights 101. This has not been a blog that focuses on disability rights.
I’s like to address only the functionality of the DNR, and not the morality of it.
So, you get to leapfrog over the entire subject of the intrinsic value of disabled people’s lives!?! Pretty good trick!
“I’d like to address whether lynching REALLY WORKS and not the morality of it.”
Mandolin, but I see this same pattern on virtually every “progressive” blog. Why? Why is disability rights the subject progressives are so often clueless about?
And why is disability rights always the subject in which people who are usually liberal and/or progressive suddenly jump over to the right? See ASHLEY X debacle, for details.
For example, I Googled some stuff last night, to see what various famous liberals/radicals said during the Ashley X controversy, and was stunned to see people I admire, such as Michael Eric Dyson and Michelangelo Signorile, lining up dutifully behind the status quo.
I don’t think your complaint is as unique as you think it is. If you go to blogs that are “mainstream” progressive, you find plenty of sexism — why does Daily Kos think it’s okay to complain about the sanctimonious women’s studies set? Why can you elicit horrendous anti-trans statements out of radical feminists who are focused on the interests of cisgendered women? Why can Sudy put together a whole video of almost exclusively horrendously racist comments made by feminists on feminist blogs? And heaven knows, it’s ridiculously easy to get progressives to say that fat people are stupid and lazy.
In any case, I don’t think the base population of this blog has acquired the sophistication to move beyond disability rights 101. I haven’t. I mean, I spent a chunk of Christmas break reading back through the past 3 years of Ballastexistenz’s incredibly briliant blog, but I still don’t think I’m anywhere near the end of disability rights 101.
I think it’s fair to call people out on being ignorant or mean, but unfortunately, I don’t think the bulk of this population can be expected to be beyond disability rights 101.
(I agree, however, that in a world we should strive for, it *would* be reasonable to expect this population to be beyond disability rights 101).
That’s all fine. But 1) I will continue to point out to people that they need remedial education, especially when they ASK, point-blank, as outlier did. 2) When people say uneducated, backward, right-wing drivel, including the drivel you have catalogued, I will call it that.
If you want to argue that their stupidity excuses them for garbage like what Sailorman just wrote, well, okay, but I just don’t agree. I have seen his name here for eons, and he should have been able to buy a clue at this late date.
Mandolin, the problem with Disability 101 – like all 101 stuff – is that it drags the discussion into a privileged/able-bodied perspective and doesn’t really respect the PWD perspective. It’s seriously like if every time a plane crashed, people would start debating whether heavier-than-air flight was a wise thing in the first place.
There’s a lot of Disability 101-level stuff available on the net, too. I mean, everything from the spoons essay to Amanda Baggs’ blog. Just following some links from a disability blog carnival might be informative, or just checking out Kay’s other posts here on Alas.
Look at how this topic went down on brownfemipower. Rndo dragged it into disability 101 there: Should disabled people be allowed to exist as they wish? It’s like Sisyphus and his boulder – you post about how it’s considered okay to put a DNR on a child with cerebral palsy because she has choking fits, and how does this compare to a more socially acceptable condition like asthma anyway? You ask, “why isn’t she given the basic right to live her life?” and someone always drags things down to, “does she have the basic right to live her life with that disability?” Of course she does – why is this even a question? Why should anyone be expected to debate whether they should have the right to live their lives? Because, seriously, when someone asks “Why shouldn’t Katie have a DNR order?” that’s a question that can be applied to many people with disabilities, many of whom have blogs of their own, and of course read many other blogs – which means that they’re probably participating directly in these discussions. And somehow, the obvious, simple, easy, correct answer just doesn’t get much acknowledgement: Because they’re human, they’re people.
Why does that question ever get asked? Why does the discussion ever go past “because they’re people?” Why do people debate how “close to death” she might hypothetically be? Why do people debate her right to even go to school and be in public with able-bodied people? Why do they debate her self-awareness, her right to personal autonomy? Why do they not realize that when they make these arguments, it’s just one thin line from applying them to Trin, Kay, Amanda Baggs, Bint Alshamsa, L, Ms. Crip Chick, or if they do realize, why do they think it’s okay to do this?
That’s what’s wrong with disability 101.
There’s lots of stuff wrong with disability rights 101.
However, on this blog, in this setting, the bulk of the reading population is probably at that point. There are ways around it: for instance, Kay could put up some comment rules that asked people who aren’t supporters of disability rights to stay out of the discussion.
I just don’t think you can expect the population here to spring boldly and immediately into a more advanced place without preparatory work.
I’ve said my piece and this feels like a derailment (entirely my fault, of course), so I’ll stop here, unless someone posts something specifically requesting my response.
L,
No need to apologize. I worded it badly.
Mandolin, you sound like you are excusing people’s ignorance. Would you excuse their DELIBERATE ignorance over any other subject? Because I’ve seen you roast them alive when the subject is close to your heart.
As Lisa points out, there are copious opportunities to learn. The repeated, obstinate refusal to do so, is what perpetuates oppression.
Trin (#16 & 17),
Thank you first of all for the tone of your responses.
I still maintain that the intent of my original critique was a writer-to-writer notice that if one decries the “misleading, incomplete or biased” nature of “these sorts of articles from the mainstream media” (on topic at all, and not necessarily disability rights) then the criticism had better not contain misleading, incomplete or biased reporting itself. And strictly speaking, her claims about the article did contain some of those elements.
As for the analogy you presented in #17, if you want me in the jury then I can only judge the evidence that’s in front of me. I read the Chicago Tribune article and I read Kay’s critique of it. Kay’s critique was a bit off the mark; if the Trib article had holes in it, then Kay failed to show me what they were. I think it’s obvious that the statement at the end about ‘no beeping machines’ that has tripped so many people’s triggers here did not have its intended effect. I read it the way I believe the author intended it, just that the family had made a policy decision not to resuscitate or to use life-saving machinery. Others have focused on “no beeps”, as if that were somehow relevant. I don’t think it is at all, but I can agree that the reportage left it ambiguous and it’s obviously a sore point with a lot of people.
My use of the word “tragedy” was not in reference to the CP itself, but to the pending tragedy of the little girl’s death. Simply that, and no more.
I understand your analogy regarding institutional racism in the context of a jury trial, but I have to reject it. If you feel that my biases and prejudices have compromised my ability to sit on the jury and judge what I read from the two sources, then by all means point that out to me. I’m willing and able to be corrected. For the ‘trial’ of Kay’s complaint against the Trib article, I find in favor of the article. Kay’s assertions are “not proven”.
If Kay wants to make the point about her original claim, I think she needs to pick another story to do that with. Castigating the parents for the DNR order and “no beeping” completely missed the point of the article. And by a wide margin; it wasn’t even close.
Again, I want to emphasize how much I enjoy this discussion with you, and I’m willing to follow it further–and continuing in this tone–if you want to. If I’m wrong, and I always admit that possibility, then feel free to show me where.
Here is one thing I don’t get: Disability discrimination, at its heart, is the same as the discrimination that women, minorities, gays, etc. face. It is about dehumanization. The disability movement is about ensuring that we are treated as humans.
I would not consider myself to be an expert on gender studies or ethnic studies. I have not read a lot of Firestone and Dworak for instance. So I do have a lot to learn about the specifics and nitty-gritty of these issues. But I can and do transfer what I know about how it feels to be a minority as a disabled person to those other issues. I know it is about the fact that woman and minorities are just as human as white men and should be treated as such. If I can transfer this, why can’t others who are not as familiar with Disability rights?
I can see someone saying, “Gee, I’m not sure I understand this. I don’t know anything about CP. Is this a terminal illness?” And then others might offer information about the many successful people who live long lives with CP and also information of some of its complications and how “terminal” they are. Then, once it is established that CP really is not terminal and there is some question about the need for a DNR on this girl in the context where it is understood that disabled people are historically treated as less than human..we could go on with the discussion with the assummed presumption that she is, in fact, human with an inherent right to live.
But it seems like all these discussions fall into the “but its a tragedy and she is so disabled that it is understandable that the parents want to put a DNR on her and why not plaster it on her wheelchair if it makes carrying it out more effective?” I think it is fine to not know all the nitty gritty and the history, but is it that hard to recognize the inherent humanity of the disabled? Cannot that knowledge be transferred from other progressive causes?
I’m not making an argument about ignorance, I’m making an argument about setting. This is not an advanced setting for this issue, at the moment.
Daisy (#19),
I’m amazed that you were able to pinpoint my biases and prejudices so quickly and so clearly. What gave me away, anyway? Or should I say: Have I managed to pass so well and for so long that no one sees my disabilities? Cool.
I didn’t call CP a disease. The word was used in the article.
If you think that I went on for “several paragraphs” of seeming to comment as if I know about CP (after I said that I didn’t), perhaps you would be good enough to point out even a single sentence of mine that qualfies. I just re-read what I wrote, and I can’t find it. But what do I know? I couldn’t even see my own biases and prejudices.
As for my use of the word tragedy, see the post above. If you don’t think a little girl’s pending death is a tragedy in the making, then I guess there’s no point to this little discussion of ours. As for activists of any stripe, I don’t give two hoots what their hot buttons are; you and they can activate away for all I care.
I don’t know what Kay has been doing or for how long. I read one (misguided) criticism of one article and called her on that. If she wants to point out actual flaws in the article, then fine, let her do that. She didn’t make her case. I don’t have to know anything about disability rights or other groups or activists to read what I read of her own criticism and draw a conclusion from that. Period.
If you want to take the chip off your shoulder and talk to me rationally, then perhaps I can learn something from you. I’m not going to try to knock it off, though. If you want to stand behind your own biases and prejudices and moral superiority (you believe), then I guess the discussion is over before it begins.
You have clicked on all of the links Lisa politely provided, right? How much do you know about disability rights, again? You ignored every one of my questions. (Obviously, this is due to my “tone”… where’s Nezua when we need him?) You also didn’t answer any of L’s, or Lisa’s questions. (Their tone is “bad”, too?)
Really? WHERE in the article was Katy directly quoted, again? I must have missed that.
And again, how can you possibly say an article is fair, when the SUBJECT of the article is NEVER ASKED A SINGLE QUESTION? I read an article a few days ago about a kid getting a rescued puppy for Christmas, and they were careful to talk to the kid. But I guess when the subject of a news story is a disabled child, actually IGNORING her opinion is considered to be OBJECTIVE REPORTING by you?
Why?
Oh, is that all? Well, hey! That’s okay then, right?
IT IS WRONG TO ASSUME THAT A DISABLED CHILD *SHOULD* DIE, WHEN YOU DO NOT MAKE THIS ASSUMPTION ABOUT NONDISABLED CHILDREN.
Is that clear enough for you?
What about that do you not understand?
Kay (#23),
Re: Doctor’s approval of a DNR
All I know is what was in the article:
“A Do Not Resuscitate order is a doctor’s directive, issued with the consent of the family, that cardiopulmonary resuscitation will not be used if the patient suffers from heart or breathing problems. It can also prohibit using such devices as a defibrillator or an intubation tube.”
I understand your concern with the missing and incomplete “background” to the story, which is, of course, Katie’s life and medical condition. Since this article that we agree is “not about Katie” is based so much on her and the response (or intended lack of response) the worsening medical situation, there should have been more of a presentation of exactly what is worsening there. That issue was skirted. I don’t know if it was in deference to Katie’s privacy (which seems moot at this point, doesn’t it?) or the family’s decision not to share that, or simply an editorial decision by the Trib. As a parent myself, I took it more or less on faith that the family feel that they have done all that can reasonably be done for their little girl, that they love her, and that it’s time to let nature take its course.
That’s why I thought that the focus on “no beeps” (both by the author of the article and then by you, because you jumped on that remark) were off the mark. The parents have obtained a DNR for their little girl. THAT is a tragedy! Now the story is about how that should be handled by the school and town services, when the situation arises.
The point that others have made about “visibility” is an excellent one, I think. I had originally thought that the DNR order made prominently visible on the wheelchair was disrespectful and borderline obscene. But I understand differently now: If it’s not obvious to a newcomer to the scene who doesn’t know, then it would be totally ineffective. Perhaps there’s a better way to handle that, too.
As for Katie’s thoughts, I would agree with you “if” the article were merely a human-interest story about Katie and her family. What are her thoughts? I wish we knew. I don’t want to say that they’re not relevant, but from a strictly editorial point of view about “the topic of the story”, I have to say that they’re not. But only in that narrow context. Otherwise, of course, Katie’s thoughts are the only ones that really matter, aren’t they?
(The analogy that others have made between this DNR and its execution to lynching and its “effectiveness” is odious and below the belt.)
Chris, I didn’t write #17, though I agree with it.
The big thing is that people have an idea of what “care” means that doesn’t really pan out as they intend it. There is an idea that because the intentions are (or are stated to be — I’ve seen a lot of stuff where I doubt that the people’s motivations really were positive) caring, what’s happening must be good, must be positive, must be respectful, must be what’s best.
http://trinityva.livejournal.com/617296.html
http://www.normemma.com/arstairs.htm
The thing is that they TELL you these things are care, and they pat themselves on the back for giving you “care” and call one another “brave” and “warriors” and “inspiring” and it’s always about them
and how much they care.
enough to let you die.
and if you wonder how that’s care you’re ungrateful. combative. you’re sometimes even called “noncompliant.”
How would it be if rapists could say “she was noncompliant” and everyone could just nod, shake their heads, wonder at those silly women and how foolishly they spook?
These things *have a context*. If you’ve lived in that context you know what it is.
And another thing…
The beeping is a good example. People here seem to have trouble understanding about the “no beep” thing. If we assume that the information in the article is accurate and not a misquote, it sounds as if the family was intimidated or otherwise didn’t like all of the beeping machines that the girl used in the hospital and has thus avoided them in the home.
When I read this, and I read it before I read Kay’s commentary, this sent off HUGE red flags to me. It has to do with the history of disabled people being denied equipment and healthcare treatments because the equipment was thought to be inherently bad or shameful or somehow using them is a fate worse than death. This is the “confined to a wheelchair” response to a wheelchair that offers freedom. Or the “L., do you HAVE to take your white cane? Everyone stares at us when you do.” or the “I would NEVER want to live on tubes,” when many people happily use various “tubes” to promote their health and freedom. Disabled people look upon the technology and equipment that helps them function as liberating; not shameful.
So, okay. Maybe if you are not familiar with disability 101, you never thought of it that way before. So you may ask, “Kay, I don’t understand what you are saying about the beeping and why it bothers you so much.” But instead, it seems like people want to argue that the ‘no beeping’ thing–typically a HUGE red flag when able-bodied people want to deny the disabled access to healthcare and equipment, is nothing. And that Kay doesn’t actually have a valid and supportive point in bringing it up.
Sure, you could argue that the newspaper is wrong about the beeping, but we don’t have any evidence of that. The evidence we do have, a dislike of medical equipment and innaccurate information about said medical equipment (no group hugs), shows a very likely prejudice against disability on the part of the parents. This leads to serious doubts about the ethics of their decision to put a DNR on the child.
I don’t know if this is the best analogy (maybe someone has a better one), but its just like ignoring that some man says he goes home every night and watches “g*rls g*ne w*ld” because he says, “but I really love and respect women!” Or a person who says, “I’m not prejudice, but two black people and a jew go into a bar…” Someone might say, oh he’s not prejudice! He said so, didn’t he? Besides, who doesn’t like a good black/jew joke? Kay has pointed out possible supporting evidence about her suspicion that the DNR is possibly not warranted by pointing to the “no beeping” rule as a sign of prejudice. Chris refuses to see this as credible evidence because of a lack of understanding of the ways in which Disability discrimination shows itself.
Okay, if this is too hard to talk about, let’s talk about the fact that in the U.S., people with organ failure and intellectual disabilities can’t get on the transplant list. And people with psychiatric disabilities very rarely do, a fact I luckily discovered After I got on the List and After I passed a demeaning screening with a graduate stucent who thought ovary transplants were cool and knew nothing about transplantation at all. Yes, it’s a thread hijack, you can ignore it, but I don’t think it’s a hard topic.
I’m also trying to post in Kay/Blue’s support.
Thanks, Lisa. You’re among a small number of bloggers who seem to really be dedicated to making an effort to cross all boundaries and make connections between experiences and write about those connections. That’s not an easy thing to do, and not something I always do well myself. It requires a great willingness to fumble it badly sometimes that I’m not always up to myself. It’s appreciated.
Chris Nelson:
My mother, may her disability-activist soul rest in peace, would have said you were on the honor roll at Smartass U.
You freely said you hadn’t read anything Kay wrote, and seemed pretty proud of yourself for that. I can’t imagine a disabled person being so dismissive of a disability activist, but hey, shows what I know.
Nezua calls this particular rhetorical approach The Appeal to Melanin–in your case, the Appeal to Disability.
Um, I was talking about your choice of language. Disability activists have said they do not like the poster-child connotations of the word TRAGEDY and believe that it derails discussion of rights into emotional appeals …that does not objectively mean that something is or is not a tragedy. I gave the example of Obama being constantly called “articulate”–of course he is articulate as hell–that is not the point. The point is that black activists have educated us about the history (and underlying assumptions) of that word as used by whites about blacks. If you are a progressive white person worth your salt, you will quit using the word and find others. I haven’t found it too awful difficult.
Nezua calls this one Wite Disdain and breaks it down:
• “Run along now with your niche complaint.”
• “I dont care because it doesn’t affect me.”
• “We’ll get to that later, when we fix the important things.”
And then, you actually continue the Wite Magik Attax, with no sense of shame at all. You say, without any irony–
Nezua calls that one The Drowning Maestro and specifically mentions that dreaded “chip on the shoulder”… wow, it’s like Nezua is writing Chris’ whole reply! Gollee, how on earth did THAT happen????
Doesn’t it embarrass you at all to act like one of the Wite Magik Attax people? Isn’t it rather like looking in the mirror and finding out you are a cartoon character?
Wait, so now you are saying Kay DID prove her point about the article?
Dayum, I’m so confused.
Wow. What can you say to something like this? “We are going to kill someone, but their opinion of that isn’t important.”
Obviously, Chris believes some people are more equal than others.
Prove it.
If you can’t prove it, I find for the analogy.
It doesn’t seem relevant to me as to whether the article’s intended subject is about how the school deals with potential medical emergencies, because the article actually deals with Katie, the fact that her mother has a big DNR sign on the back of Katie’s chair, that apparently Katie had no say in her potential fate, that her parents won’t allow machines that may improve her life in the house. Never mind that all of this is part of a familiar pattern that plays itself out over and over again, that people with disabilities are considered more expendable than able-bodied people, that their needs are impositions and inconveniences, or that their lives are supposedly not worth living.
When I read this article, I didn’t see a mother trying to spare her child the trauma of experiencing resuscitation, I saw the same kind of rationalization that leads parents to kill their disabled children. I don’t think Katie’s parents are on the verge of murdering her, but requesting that life-saving medical treatments be withheld to “spare her that experience,” is the same kind of thinking to a different degree.
All of this stuff can’t be magicked away by pointing out that the article is supposedly really about how the school is handling the DNR order when the DNR order is itself so problematic, when publicizing it for all to see is so problematic, when denying her medical treatment that could improve her life because they see life support machinery as shameful or inconvenient.
There’s real history, real precedent here. This same story has played out over and over again. When it does, PWD suffer for it.
“(The analogy that others have made between this DNR and its execution to lynching and its “effectiveness” is odious and below the belt.)”
Well, yes, of course because:
Lynching = unjustifiable death of black person.
DNR = unjustifiable death of nonterminal disabled person.
Black person’s right to life > disabled person’s right to life.
It all makes sense, now.
I think one of the assumptions Chris is going under is that all parent’s will always do what’s best for their child. And I think this stems from not knowing the history of how some parents have historically denied the rights of their disabled child by denying medical services or outright killing them (see Latimer). Does someone have a quick list of these? Like that woman who killed her autistic kid? Or some of the other examples of DNRs and denied health care of disabled kids by parents? Ashley Treatment? Maybe that would help.
It may well be that the parents have good intentions within their own prejudicial framework of disability (and the medical profession’s rampant support of that prejudice), but historically, there have been many cases where parent’s good intentions did not respect the rights and humanity of their disabled child. I would not make a final decision about this family’s frame of reference without first having a lot more information, but I think that the information given causes legitimate suspicion in the context of the historical framework.
L, Trinity has a collection here, and here’s a list of autistic children murdered by their parents.
Is this the woman you’re thinking of? She suffocated her three-year old daughter to spare her from growing up autistic.
And of course there’s Ashley X and Katie Thorpe, when it comes to using medical care and unnecessary medical procedures against children with disabilities.
outlier (#30): Kay, the way I interpreted the “no beeping” rule was that the parents didn’t want machines that constantly beep (for no reason) around Katie. I inferred that Katie had spent a lot of time in a technology-heavy setting, and they wanted her to have a break from that.
I agree with you that the “no beeping rule” implies the parents do not want machines around Katie. And here we mean medical machines specifically, don’t we? We’re separating them out from other computers and phones and tvs and anything else electronic that might also beep. See how that fact gets elided in the very way the rule is presented?
Also note that like other machines, medical ones do not beep “for no reason.” They beep for very specific purposes and are designed to communicate things people using them would want and need to know.
That said, it was one brief mention at the end of the article. There might be a whole lot more to it than that, it could have meant something different than what either of us are guessing, it could have just been a good sound bite and not even true for all we know.
So, when you use this single statement as the point on which the essay turns, it loses me. That is all I’m saying.
Here’s where the experience of ableism, both culturally systemic and personal, kicks in. The mention of the “no beeping rule” was no more brief than any of the other anecdotes about home life with the Jones family or school life for Katie. The details are what paint the picture. And I believe everyone here has agreed some vital info is missing from a complete picture. But Penny, Trin, L., Alison, Daisy and I are making a big deal out of the “no beeping rule” because we understand in disability/ableism terms what it really means. We understand it the same way a person of color understands racism when they hear it even though it is not an outright slur. The “no beeping rule” has a cutesy name for the children, perhaps, but what it means is directly linked to the fact that these parents have decided on a DNR order.
Banning medical equipment from their home and not wanting life-saving measures performed on their child fits in perfectly with the overwhelming cultural message we hear every day about “not wanting to live on machines” or “pulling the plug. It fits with how strangers approach many of us disabled on the street and tell us to our faces “I wouldn’t want to live if I was like you.” That this message was reinforced from inside the Jones’ daily routine with a falsehood about the inability to have “group hugs” while using a machine demonstrates how the cultural ableist message persists in the face of truth. (Much like myths about race.)
If we were discussing a story about someone who was violently anti-immigration and the article reflected that with a family exchange that included a falsehood about immigration, both the exchange and the context of its reinforcement with falsehoods would be relevant to the whole article. The context would tell you that their beliefs were not based all on fact. This would be important whether you agreed with their basic beliefs or not.
Also, I’d guess that most of the people reading this are not familiar with the disability rights perspective or with your previous writings. How familiar should an audience be before they can respond critically to your writing?
Addressing outlier and also the more general topic of Disability101:
When I started this permanent gig about a month ago, one of the other writers here asked if I wanted to restrict commenting on my disability posts to those who are disability-rights-friendly in the same way this blog has “feminists only” threads. I declined that mainly because I think we need to have these messy discussions where die-hard disability activists mix it up with the well-meaning, the asses, the clueless, the confused, the earnest and everybody else. I don’t think that’s just because the disability activists have so much to teach everyone else, either, though I do believe that we do. To suss out what ableism means when we haven’t been taught to see it the way we have racism or sexism we need to see each other’s turns of phrase and botches and work through what things mean, see the patterns illuminated, discover our own biases, doubts, fears, etc.
There’s at least one post I’ve put off writing because this meta-conversation needed to happen first. (I wasn’t actually forward-thinking enough to understand completely why I put that post off until writing this today, but I did instinctively know it was too explosive a topic for me to cool-headedly moderate comments on until I’d established myself here a bit better and decided where to draw various lines in the sand or whatever.)
There’s not so much moderation required at my own little blog. Traffic is low compared to here and people self-select as mostly sympathetic to the basic premises of disability rights. Those who fear or hate the disabled rarely comment or rarely return if they do. That’s a large part of why I took Amp up on the offer to blog here. I love talking amongst ourselves, the small group of bloggers on disability. That’s my community. But we could do that forever and not have our voices heard in the larger community we all have to live in.
Sure, I’m tired of Disability 101, and I reserve the right to say here at some future date that “I am done explaining X or Y, go educate yourself and then come back and we’ll try again.” But I don’t think that’s reasonable or useful at this point in my tenure here or at this point in public awareness about ableism or disability rights. Not useful from me, at any rate, as the one with some basic moderation power over discussion. I’m happy Daisy is fiercely demonstrating that there is a body of knowledge, both experiential and theoretical, out there backing my basic viewpoint up. I hope people look into it. And I hope people feel these discussions are open for all reasonable exchanges in the meantime.
Chris Nelson (#45): If Kay wants to make the point about her original claim, I think she needs to pick another story to do that with. Castigating the parents for the DNR order and “no beeping” completely missed the point of the article. And by a wide margin; it wasn’t even close.
We’ll have to disagree, though I’m certainly not the only one making the claims I’ve made. And others that I linked to at the top of the post actually made them before me.
For many other posts I’ve written critiquing mainstream media, you can find “media” in the index at my blog. I’m fairly confident that as a body of work they point out consistent problems in the portrayal of disability issues and disabled persons.
Kay, thank you for the kind words.
Fumbling is too easy, and I’ve already done it a couple of times. I just hope people keep saying “hey, you screwed up” so I can fix it when it happens. :)
As for the connections, intersections made the idea of oppression comprehensible for me – not just my own, but the oppression others deal with. I had trouble admitting that what I experienced was oppression beyond just sexism and homophobia, so I didn’t really pay much attention beyond those two. But when I read Amanda Baggs, BFP, Nezua, and others, I kept coming across painfully similar experiences – and it all made sense where before it hadn’t.
I agree with Kay here. Lisa, you’re really awesome at that. I second the kudos.
>>Why does that question ever get asked? Why does the discussion ever go past “because they’re people?>>
seriously. And you know: 101, whatever, and this is true of EVERY damn “controversial” topic that comes up, here or elsewhere, whether it be trans-related, race-related, immigration, sex work, war, hijab, class issues, reproductive rights…-every- time. The reason it goes beyond “because they’re people” is because there is a core belief that in fact “those people,” whoever “those people” are, are -not- entirely three-dimensional people, and/or for some reason can’t be trusted to speak for themselves, make their own decisions, understand their own experience. They need spokespersons; they need interpreters; they need saviors, defenders for and against, anthropologists, analysis, discipline, Henry Higginses…something. Always, it’s something.
“The people! The things!”
“The things are also people.”
“The people!…the…also people…”
“101” anything is understanding that the “also people” are people. Simple, but apparently beyond a lot of…people… a lot of the time.
Sigh. nice ad hom, though.
Look, they’re different issues. If the DNR is necessary–note the “if,” please, before you also refer to this post as “garbage”–then, well, it should be effective.
Similarly, people who address the way the DNR looks are, whether or not they state as much, also addressing whether it works. You can’t easily separate how it looks from what it does, which is what I was trying to explain.
So it makes no sense to complain both about whether it should be in force at all, and about how it looks. If it should be in force, then you need to have it look as it should, in order to work. And the question of whether the DNR should exist at all is too serious (I hope) to be driven by how it looks.
As for the lynching thing, here’s why it’s an bad analogy:
ALL lynchings were (are) wrong.
SOME decisions made on behalf of disabled people are wrong. Not all of them.
Maybe this was a bad decision. But you are making a ridiculous statement if you imply that it is always inappropriate to make a medical decision (including a DNR) on someone else’s behalf, whether that person is disabled or not. And that is what your lynching analogy is saying, and that is part of why is it being badly received.
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That last comparison strikes me as a bit off; she wasn’t comparing “all decisions made for people with disabilities who can’t or aren’t allowed to make them themselves” and “lynching”, she was comparing “a Do Not Resuscitate decision made for someone who can’t or isn’t allowed to make this decision for herself” and “lynching”.
Obviously not all decisions made for people with disabilities have been bad ones, any more than all decisions made for people of color have been bad ones. Decisions for life, quality of life, increased autonomy and equality tend to be good ones; decisions that aim toward death, decreased quality of life to make things “easier” for everyone else, decreased autonomy, and inequality tend to be bad ones. (I don’t think there is any disagreement which category lynching falls into; there is disagreement, valid or not, about which category this DNR order falls into.)
Me, I don’t know enough to properly look at this from a disability rights perspective, so I’m looking at it more from youth rights, which I’m more familiar with, and leaving off the factoring in of cerebral palsy for the final reckoning. And from that perspective, if she’s not old enough (…I don’t know how “severe cerebral palsy” affects mental processes, but I think the reasoning still stands) to decide for herself whether or not she wants to *die* over experiencing the discomfort of resuscitation, or to weigh the risks of trying resuscitation but dying anyway versus certainly dying versus possibly living–the assumption should be “life”. Parent(s)/guardian(s) have rights, but deciding for death for their sentient offspring before they can choose for themselves isn’t one of them. And if for one reason or another said sentient offspring will never be mentally capable of making these kind of decisions, well, then it still shouldn’t be entirely up to the parent(s)/guardian(s) to decide that, oh, if she could decide for herself, “she’d rather die” than be resuscitated. At that point, it’s better to rely on her long-term mental health than what her caretakers want, which is by no means inherently “what’s best for her”.
And that’s without knowing if Katie’s able (mentally, I mean, because if I understand the discussion right we’re talking about how the law should be, not what it is) to make this sort of decision for herself. If she’s mentally on par with most second-graders I know, or for that matter most preschoolers (kids are able to do pretty astounding things pretty early on), she could understand the idea of death enough to decide how she feels about all this–especially if, like one person posited, she’s been resuscitated before enough to know how she feels about that experience, too. At the very least she could overrule her parents’ decision, even if you don’t think she could really agree to DNR.
….Oh, and second or third or fourth or whatever the thanks, Kay, for the Disability 101. It is nice to be smacked upside the head with another knapsack of privilege I should keep track of, although I know you’ve no obligation to do the smacking. Especially since I know you’ve no obligation to do the smacking.
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