December 22, 2006

Quality of Life

Schuyler at sunset
Originally uploaded by Citizen Rob.
I was driving home today and listening to NPR, and a story came on about a young woman in Oklahoma named Misty Cargill who suffers from mild mental retardation and abnormally small kidneys.

Misty Cargill needs a kidney transplant.

Out of 69,000 Americans on the waiting list for a kidney transplant, only about 16,000 will receive one this year. No one knows who will be next to get a kidney, but Misty knows it won't be her. She knows because she can't get on the list.

Because of her mental disability.

Misty Cargill was rejected from the list, despite the fact that she meets all the criteria for transplant. She's within the correct age and weight range, and aside from the fact that she will need a kidney very soon, she is otherwise in good health. She has Medicaid and is therefore able to pay for the operation and the follow-up anti-rejection medications. A patient must be capable of telling their doctors how they feel and of taking the medications that will prevent organ rejection. Cargill can do so; she's employed and lives in an assisted living community, where she lives mostly independently but with medical supervision.

But even though the state of Oklahoma considers Misty competent to make her own decisions, the Oklahoma University Medical Center transplant center rejected her referral on the grounds that she might not have the mental capacity to give informed consent to have the operation. They even went so far as to claim that her own doctors declared her incompetent to give informed consent, a claim denied by her personal physician and her kidney doctor, who say that she is a good candidate for transplant and could die without it.

In the story, an expert on developmental disabilities at Ohio State, Steven Reiss, said exactly what I was thinking: doctors appear to be making decisions based not on medical concerns, but a discriminatory "quality of life" judgment.

"There's thinking out there that some people's lives are more valuable than others," he said. "It's very hard to keep that thinking totally out of the transplant process."

One of the tests we have not put Schuyler through is a cognitive evaluation, an IQ test. There are plenty of good reasons not to and not really any compelling reasons to do so. She's receiving the services she needs in her school, above and beyond, in fact, so a test showing some sort of diminished cognitive capacity isn't going to help her get more help. More importantly, an IQ test administered on a non-verbal subject is extremely subjective and dependent upon the independent interpretive judgment of the test administrator. When we saw Dr. Dobyns in Chicago, he warned that such a test should only be administered by a qualified pediatric psychiatrist, and even then we should take the test results with a grain of salt.

I have no idea how profoundly Schuyler's cognitive abilities are affected by her monster, although my gut feeling (and those of the medical evaluators who have seen her before) is that her impairment is mild and probably due more to her communications difficulty and developmental delay than to her brain malformation.

Today, it suddenly became clear once again why we were correct not to have such a test administered to Schuyler, and why we likely never will. Today, I heard the story of Misty Cargill, a young woman who goes to a job and has a boyfriend who takes her to the movies and who bowls in a league and who can't get a life-saving procedure because someone somewhere has decided that she's retarded, and retards don't deserve to live as much as the rest of us. Today, I remembered the emails I have gotten, not many but a few, suggesting that Schuyler's class is a drain on the resources of the public schools, and that she and the other members of her box class should be institutionalized (and marginalized), not mainstreamed.

It's a hard, rough, shitty world for broken people. Don't you ever doubt that, not for a goddamned second.


Kathleen said...

when you said "....retards don't deserve...." I certainly hope you were being tongue-in-cheek.
My brother is one of those "retards" and I have ALWAYS hated that word.
The correct term is
"developmentally disabled".

Rob said...

Good lord, even if you'd never read a word I've written EVER, can you really not answer that question yourself simply by reading in context?

grandefille said...

Oh, Rob. What pricks y'all have to kick against.

Thank heaven Schuyler wears boots and has the backbone and heart of a dozen big tall Texans, but still.

We love y'all dearly, oh goodness we do.

Anonymous said...

Donna said:
Some people will never get you Rob, (Kathleen).
Is there a way to run a campaign of sorts to get Misty a kidney?
And there are IQ tests online, but not geared to kids. I'd bet my ass, and this is just from the things that you have said about her, that her iq is fine. It's as you said, more her speech that holds her back, not her smarts.
Well that, and being a Texan. LOL, sorry, we have to rag you guys being that we live in a much better place, NM....not.
Rob and Julie, you know best for her, don't you ever doubt it.

Anonymous said...

Rob, this post brought tears to my eyes and made me want to run away screaming to some world better than our own, but mostly made me thankful that you and Julie are here to teach Schuyler to be the person she wants to be, regardless of what the "others" tell her she can be. I taught students with special needs for ten years and faught the administrators constantly trying to tell them that state tests, iq tests, ect. did not measure my students abilities. Unfortunately, my voice was not heard and the computerized voices of some of my students were muted while their cognitive ability was judged by various other teachers in the building. Thank you for being there to not only support Schuyler, but also to remind and educate us all about how far we still need to come in understanding various abilities.

jennifer said...

Delete all the emails that suggest classes for children of differing abilities are a drain. Do it now! (Maybe you already have...)

And as for medical procedures, it is my understanding that children with Down syndrome are not put on heart transplant lists in the UK for the same reason. It seems impossible to me that these sorts of decisions are tolerated. I would have thought that we'd moved past these sorts of arbitrary classifications about whose life is "worthy" and whose isn't. We still have a ways to go, I'm afraid.

Amy said...

I could puke.

My son is broken. . . .
Healthy, but broken.

Most of the population would not be offended by your use of the word "retards."
Reading this about this woman makes me so incredibly pissed off that I ma unsure about what to say. I'm hoping I will stew on this, and hopefully something good will come of it. Thank you for sharing this.
I was busy feeling sorry for my son becasue his Darth Vadar costume wouldn't make it on time for the holidays. .. .
A HUGE thank you to all of those people who are fighting this battle and others like it, so when our broken children, and the countless broken children to come, won't have to fight these battles.
All I can do is shake my head.

Anonymous said...

I remember when I was in college watching a documentary about a man with some sort of "developmental delay" (I don't remember now, the actual condition) who fought everyday to live a normal life. He had a job, a girl he was courting, and a room he rented from an elderly lady down the street from his family. He seemed to work so hard and be so busy. And crazy happy.
I remember thinking that I spent most of my time lying around on my sofa in a depression, slacking and wishing for a better life. Me and my big IQ.
Who had the better quality of life?

Rahnee said...

I seem to remember a very famous person with an alcohol problem who was 'awarded' a liver. As a nurse I thought that was a little on the sketchy side, giving one to someone who ruined his very own personal organ thru choices he made. Guess mental incapacity isn't such a bad thing when you decide to cause it yourself thru alchohal and drug abuse. And it must help a lot when you can pull the money out of your ass to pay for said transplant. Not to mention all the hoopla over having a "star" who can drum up business for the performing hospital, etc, etc. It makes me sick.
Do you by chance know an address where we can send e-mail or snail mail to help this young lady? Perhaps a public outcry could make a difference in her life. Lord knows how many times it has made a change for something pissy and irrelevent........

Kathleen said...

I do "get you" Rob. More than you will ever know.
However, it is common knowlege that the word "retard" is heavily embroiled in our generations' vocabulary, along with "moron", "mongo(loid)", "idiot" and also the terms "shut up" and a few other equally rude ways people address eachother.
I was just hopin' you would get ME.

Shannon and Carey said...

Hi Rob. Although I dont know the full story/history on Misty I am thinking that Misty could obtain a guardian and then the guardian could sign the release? Maybe this is an idea? Her CM should know. I am ashamed to be from Oklahoma (tulsa) when it comes to this crap. How can this be happening? She works and pays taxes, handles money, obviously understands directions and has an awesome CM. I sure hope the CM fights this one real hard. I'd say to them "call a congressman." And Rob, I never ever forget that this world sucks for broken people. It just plain sucks. But, its people like us who keep fighting!!!!!
Shannon in Austin

Pat in Austin said...

I'd bet the ones who say the class is a "drain on the resources" of the school are the same ones that need the $18 MILLION dollar football stadium at the high school.

M. said...

Rahnee, it was Mickey Mantle who got the liver transplant. He had a cancerous tumor on his liver which could have been removed had he not done so much damage to himself by drinking so much for so many years. As it was, his liver so far gone that just removing the tumor wasn't an option, so yes, he got a liver. I, too, thought of this situation right away when I read Rob's post.

That Misty, who sounds perfectly able to cope with the surgery, is being denied a kidney due to something that is no fault of her own has made so angry and sad that I hardly know how to express it.

Does anybody know if this has made the national news? Anybody have a connection at CNN? This sounds like something that Anderson Cooper would be all over if he knew about it.


Beth said...

Start the discourse and make it loud - once the voice of objection is loud enough, there may be change. I use several films on developmental delay and diability in my college classroom to get the conversation started. According to my students, the most eye opening is The Lynchberg Story which recounts the last American residential facility that performed forced sterilizations on residents with low IQs. Man...time to get loud!

Rebecca M. said...

A society that refuses to take care of its neediest members doesn't deserve to call itself civilized.

Rob said...

Kathleen said...
I do "get you" Rob. More than you will ever know.
However, it is common knowlege that the word "retard" is heavily embroiled in our generations' vocabulary, along with "moron", "mongo(loid)", "idiot" and also the terms "shut up" and a few other equally rude ways people address eachother.
I was just hopin' you would get ME.

Then let me spell it out. Yes, I was being sarcastic. Shocking, I know.


Shannon and Carey said...
Hi Rob. Although I dont know the full story/history on Misty I am thinking that Misty could obtain a guardian and then the guardian could sign the release? Maybe this is an idea? Her CM should know.

Funny you should mention that. From the NPR story:

"But Cargill was getting more worried. So they asked the county department of Adult Protective Services to be her legal guardian. Officials there reviewed her case and declined, saying she's competent to make her own decisions."

Mete said...

Damn right, Rob.

In a similar vein, the Terry Schiavo case still haunts me. My son is at a very similar level of functionality as she was. The main difference between the two of them is that he is a cute (though I may be biased) child while she was a grown adult, no longer cute and cuddly.

Granted, there were questions of her prior wishes being met, but that wasn't the whole story. I heard people I knew - people who hear about Ethan on a regular basis - saying "Yeah, but they should put her out of her misery. What kind of life is that to live?"

While our son is still a child, he's got us to protect him, and the outside world isn't quite as threatened by him. But when he's a grown adult who still functions at a 6 month old level, who needs constant care and attention... what will the world think his quality of life is? Even when he laughs and smiles a thousand times a day? More than any of his medical issues, I'm afraid for his future, and wonder if he'll be valued as a human being.

The saddest part of this story to me is that Misty is nearly "normal" by society's standards. If she were moderately or severely disabled, this probably would have never have made the press.

Rob said...

Rahnee, it was Mickey Mantle who got the liver transplant.

I was thinking of Larry Hagman, actually. Am I mistaken?

M. said...

I was thinking of Larry Hagman, actually. Am I mistaken?

Whoops, I forgot about him. You aren't wrong. He is yet another celebrity alcoholic who got a liver transplant very quickly after being put on the list. I don't remember as many specifics on Larry Hagman's situation, though I do recall him saying openly that booze rotted his liver and that he did continue to have a drink once in a while after his transplant. I don't know how big a deal that would be for anyone else, but for an admitted alcoholic and AA member, I would think it would be a very, very bad decision.


moreena said...

Are you freaking kidding me? I try very hard to respond to myths about organ donation and transplant that are perpetuated on television, and most of them come down to a frank assertion that we need to have faith that the medical world is keenly aware of the ethical issues surrounding donation and transplant, and that they have worked very hard to set up an independent governing body that addresses issues like conflict of interest and preferential treatment.

Then along comes some real-life story of sheer dumbassiness like this. Good Lord.

Let me point out that, of course, keeping up with all the med's that are required to keep a transplanted organ happy is no small task. Annika's schedule is complicated enough that it throws me for a loop some days. Still, that's what pill cases are for, right? Once a week, the thing gets filled and, zoom, off you go.

From what you describe, this objection doesn't sound like it applies to her at all. In fact, with help, I'm not sure who, exactly, it applies to. By far the highest incidence of non-compliance with anti-rejection med's are teenagers. So this is probably not an approach anyone would care to push too far, eh?

Off to do some more reading. I'm steaming.

ladysop said...

wonder if Oprah has heard of this one.

Kinzie said...

the bad part is, so many people in the world are "broken" - it has a varied definition. And so many of the "retards" are kind, decent people, while so many of the "normal" ones are complete assholes. I'd much rather keep a retard around than a lot of other people. How stupid, and infuriating.

Anonymous said...

Here's another celebrity who abused himself into a liver recipient and then went on to be an even more famous sperm donor- David Crosby.

kpr54 said...

Schuyler's monster in the outside world seems worse than the monster inside her. "The world" will _keep_ her down, even when her personal monster won't.

Our daughter also has broken brain, but physically, she's perfectly healthy. The discrimination she will face in later years is devastating.

Rahnee said...

Yeah, at first Larry Hagman came to mind, then David Crosby & Pat Summerall, the list goes on for the rich and famous (not all of them wrecked thier own organ, I know) For Misty to be flat out denied is wrong on so many levels. I would so very much like to voice my opinion to someone who could try to change this for her, but my imagination is rather limited as to what/who could help!

Keri said...

Nah, I'll never doubt it because I'm one of those "broken" people. I wonder if doctors discriminate deaf people for transplants... Nevertheless, no one should be discriminated against. Each life should be valued.

Lauren said...

Thanks for this post, Rob. I was listening to the story while I was driving too, but I only had time to catch the middle, and I missed why she was denied the transplant. How incredibly... disgusting. I don't understand this world of ours, but I'm grateful that people like you, and like Misty, share your stories.

How do you know I'm not Liddy Wales? said...

Maybe an IQ test in the next few years wouldn't be such a bad idea, especially if it can be shown that, as it appears from your writing, Schuyler has a roughly normal level of intelligence. It might be good to have something official on paper that says she's not mentally retarded, so she never has to end up in the same situation as this poor Cargill woman.

Rob said...

But that's the thing. We're not hesitant because we think she might be retarded, we're hesitant because IQ testing for non-verbal children is so subjective. But when that test result comes back, it's like a tattoo. It's never going away.

Anonymous said...

I agree, Rob. The tattoo analogy is perfect. My husband may have passed a genetic defect to our children. We have to strike a delicate balance between managing their health care and permanently "tattooing" them with the diagnosis.

How do you know I'm not Liddy Wales? said...

Not to hijack the comments page, but JOOC, how do they test the IQ of kids that age, especially if they can't say their answers? I know there are "culture fair" IQ tests that require a person only to identify and complete complicated patterns, without even having to be able to read or write a certain language, but I think those are only for adults. What do they look for in a kid that young?

Anonymous said...

Please don't believe that what is happening in Oklahoma is the same thing that happens in other states. In Indiana, I have personally taken care of kidney transplant patients who were developmentally disabled, deaf, and had a variety of other disabilities. There was even one little girl who couldn't speak because of brain injury, so she used sign language -- I hope by now she's got a BBOW!

Nightfall said...

Pete Rose is the famous alcoholic with the liver transplant that came to my mind, and I remember being outraged at the time.

emily said...

There are tests of nonverbal intelligence that are given to children who can't speak English or who have communication disorders: the TONI (test of nonverbal intelligence) is one of them. There's also the Leiter and the Ravens Matrices (not sure if that one is for kids--I know the TONI is).

My kid's IQ has varied by as much as 31 points. I think all these tests are absolute horseshit, and I thoroughly recommend Stephen Jay Gould's _The Mismeasure of Man_.

Dawn said...

that is HEART WRENCHING!!!!!!!! I'm soooo angry/sad/mad/confused.. Perhaps someone? could help her? people "SWAP" medical needs now-a-days... AND organs EEEK! I'd give her mine BUT my son is 9 w/the type 1 beedies & MY daughter IS retarded.. I might need to give it up later UGH!!! :) FUCK THE INSURANCE COMPANIES . ps my daughter had that test. I love this blog - its real. thanx.

sesq said...

Sometimes I'm glad I live in Australia.

A darling little girl I worked with died recently, after her third liver transplant rejected. She was a Special School student (ie intellectually disabled) and both of her parents would have a hard time hitting 100 on an IQ test. Neither of them had private health insurance, or a job.

I'm really proud that the medical staff in our public health system tried so hard (despite their truly appalling funding) to give her a chance at a quality, happy life.

She was an absolute joy of a kid.