Tuesday, August 24, 2010


Validation Of Criminal Mind- Jenn

There is a sound I can’t stop. I keep walking further and further, trying to pick up my feet higher without looking like an idiot, but I can’t stop the sound. I am wearing slip-ons. Not sandels, not loafers, slip-on tennis shoes. I’m in the Valley where everything is wide, and the streets are dirty. Not to say the inner city isn’t dirty. In fact it is much more dirty. So dirty, that when one walks it is smooth, pasted down, with the city sweat, and gas, and dirt from the bums. Here in the Valley, it’s not like that. It’s too spread out. The dirt doesn’t collect and mash into the sidewalk. It slides around as the wind takes toll. I walk and my feet brush over it again and again. No matter how much I try there is sliding sound of the dirt rolling under my shoes. Everyone could hear me. If there were people near. They could hear me. This is not a good idea. I don’t want to be noticed. Not tonight. I wore a black beanie, and take off my shoes as I am a block away from the Gremier house.

-This article is taken from "The Disability Rag and ReSource"
vol 15 no. 1 (Jan/Feb) 1994. Avocado Press: louisville, KY.-

The streets, like I said, are wide, they seem bigger and bigger then before. The closer I get the wider they become. Empty of people, and only once in a while do I get a bright beam of light that points me out to the world. Then darkness again.

-American doctors once conducted an experiment that proved you can kill the disabled babies of poor families and get away with it. Their research was funded by the Federal Government. Twenty-four babies with spina bifida lost their lives. The experiment was declared a success. Yes, it can happen here.-

It’s the lights that scare me more then anything else as I approach the house, I try to calculated how many feet the street light is from the Gremier household, or should I say shitty duplex. The color of the outside is brown. A fainted brown from what I could tell. I could shit all over the house, and no one would notice. One side of the duplex has a light. That must be it. But I don’t want it to be. It gave me shivers. The bright welcome outside light, as you open the door, you could validate exactly who this person was. “He was small like a woman, but tall, wearing a beanie. The color? Black, or was it Brown?” It is blood stained you assholes.

-Between 1977 and 1982, four doctors and a social worker at the Children's Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child's future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic - and more accurate - information about their child's potential.-

On one side, is a lit up house with a welcome doormat. There are hardly any lights on behind the blinds. It is only dim strips of lights. I can hear someone yawning loudly. Too loudly and I almost gag. The other side, is littered with toys. That has to be the one. There is no outside light, and blue fitted sheets hang as curtins in the window. I can’t see inside. Not all the way, but it is the one. I had put out an ad saying I just got my baby sitting license and wanted to practice for free. I look like just a teen. An arty teen wanting to better myself. Yes I wore make up, of somesort, and contacts distorting my real eye color. I received lots of phone calls from all across the Valley, but this was the one I chose. I took a deep breath and walked up to the house.

- None of the parents knew they were part of an experiment. Parents who were assigned to the "pessimistic outcome" group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a "do-not-treat" recommendation from their doctors.-

As I knocked on the door I could hear the baby cry out, like it knew what would happen. No one answered the door at first then I hear a couple of thuds, as someone opens the door quickly. It was a Latina woman. She was older, or looked older about 30. She was dressed to her version of the 9’s but I didn’t approve. Her dress was red. The color for lust. It must have been a special occasion. Her face was wore down, even as she smiled politly and lead me inside, I could tell she was not happy that I was white. She couldn’t speak to me. I didn’t know Spanish.

-It was no coincidence that the babies who died were the children of poor parents. To select the families for the "pessimistic outcome group," the doctors conducting the study developed a "formula" which they published as part of their write-up in "Pediatrics", the most famous and influential medical journal devoted to the care of children. This is their "formula": Quality of Life = Natural Endowment by the contribution of the Home plus the contribution of Society. In a more mathematical style it reads: QL = NE * (H + S). The doctors measured the "H" - the contribution of the home - primarily in financial terms: family income, family debt, employment and employability of the parents, etc. The parents' "intellectual resources," defined in terms of their educational level, were also included in the calculation of "H," which had the effect of crowding the pessimistic outcome group with parents less likely to challenge the doctors' "facts". Since "Natural Endowment" is multiplied by the other factors, rather than added to them, babies with a greater level of impairment (and hence less "natural endowment") were more likely to be placed in the "pessimistic outcome" group.-

As I walked in a man came out, Mexican as well, wearing slacks and polo shirt he had tucked in. He wasn’t unattractive, but the way he jelled his hair made him seem too eager. The living room was dark. It wasn’t big, and you could tell there was only one bedroom. The kitchen was connected to the living room, and the carpet the same ugly brown as the duplex. The lights wear off and everything was only illuminated by the tv, which played some off brand cartoons. The baby was falling asleep in a car seat on the couch. From the look of it, a boy, the age of 3 or 4 months. Just a fat little squirmy thing fighting sleep. The parents handed me a baby bag full of diapers and pre-made milk bottles. I wondered if it was baby formula, or the real thing. They nodded and then quickly made there escape, as if breaking free from jail. They slowly closed the door then ran to the car. Roaches were everywhere, small ugly little kitchen roaches covered the floor. I kicked one, and it seemed to kick back.

- The "formula" used non-medical factors to decide which babies ought to receive treatment, which should be a medical decision. The use of a mathematical procedure to create the appearance of an empirical foundation for the decision not to treat is not science. It's "scientism," the dressing up of a moral prejudice in the language and trappings of science, so as to lend a false credibility to a value judgment that would otherwise be more readily exposed as a mere prejudice. In this case, the doctors arbitrarily assumed that poor families offered a quality of life so much lower than that of middle-class and wealthy families that babies born into them were better off dead.-

I wasn’t interested in the baby bag. It was obviously used up, and needed repairs. The strap didn’t hang the way it was suppose to and I threw it to the ground. Step by step I inched my way closer to the child who was making weird baby noises, on the couch. At first I could see they had propped up a bottle to it’s mouth. The noises, where sucking noises. Again I wanted to gag. I’m not a baby person.

-Frieda Smith, who gave birth to Stonewall Jackson Smith in 1979, remembers being confronted by a doctor just days after a difficult birth, before she had time to come to terms with her baby's birth impairment.-

The baby spit up and started to choke. I took the bottle away and inspected it. The baby cleared it’s mouth, then stared up at me with it’s big brown watery eyes, so I gave the bottle back.

-"He (the doctor) told me that I would always have to take care of him, that he would be blind, that he would never know me, that he was more like some kind of animal than a human being," she says. "He never really sat down with me and explained what the operation would do for Stoney." Ms. Smith was never told that the failure rate for spina bifida treatments is very low, nor did she understand that the operation would reduce the degree of sensory, mobility and intellectual impairment that her son experienced. "He made it sound like Stoney would live longer, but he wouldn't ever get any better."-

A bigger roach tried to crawl into the carseat, almost flipping itself over. I could tell it was female because it did not have horns protruding from it’s ass. I thought to myself that it must have babies too, babies just like this family, only a thousand more. I flicked the roach to the ground, watched it crawl a bit, then smashed it with my foot.

-Ms. Smith signed a consent form agreeing that Stonewall would be fed and given minimal "supportive care," but no antibiotics or surgery. Later, when she had questions about her baby's treatment, the doctor refused to make himself available to answer them. Ms. Smith also says that she did not know that she could have taken her son to another hospital, where he would have been treated at once.-

Stupid. Stupid fuckers. Instead of going out, they could have bought roach spray, or a roach trap. Either would have worked, and it wouldn’t have cost much. I scanned the room. Nothing but the couch, an old TV on a warping light wooden stand, and a stand up lamp, that was turned off. There should have been toys, but I couldn’t spot any.

-During the five years of the study, 69 babies with spina bifida were born in the Children's Hospital of Oklahoma (now known as Oklahoma Children's Hospital), a teaching hospital affiliated with the University of Oklahoma. Thirty-three babies were recommended for "supportive care" without treatment; eight of them were eventually treated anyway, either because their parents insisted or because their parents or guardians eventually obtained more accurate information. All of the 24 babies whose parents consented to the "supportive care" regimen died. ( a twenty-fifth baby in the "supportive care" regimen was moved out of state by his parents and lost to the study. Two of the eight babies that were eventually treated also died, possibly because the treatments came too late.) Most of the babies who were deprived of treatment were born to women in the welfare system, who were paying for their care with Medicaid benefits. None of the 36 babies that were given antibiotics and surgery died from the effects of spina bifida. (One did in an accident.)-

I stared at the small thing, sucking hard on the bottle as if it’s life depended on it. I made myself cozy on the couch and tilted the car seat up and towards me. I wondered it’s name. Defiantly a boy, and I’m sure I had been told before, but I could not recall. Something generic, something I couldn’t pronounce correctly, even though I had taken Spanish in high school. For two years. The baby he stared at me, not quiet unafraid as I had expected, but more of accepting stare. It seemed his eyes where glued to mine, trying to get inside of my head, trying to figure me out. I took his bottle out of his mouth to distract him, but he continued to silently stare.

-In addition to being poor, many of the families of the children that were chosen to die were poorly educated. Frieda Smith felt that she was manipulated by a doctor who took advantage of her medical ignorance. Her experiences, and the experiences of other mothers whose babies died, raised serious questions about whether they truly gave "informed consent" when they signed the forms agreeing to the "supportive care" regimen. Indeed, some parents came away from their meeting with the doctor under the false impression that the hospital was not required to treat babies who did not meet the "criteria for treatment" (i.e., the formula).-

I looked around. This child was talking to me. In my head. Not making words, but giving hints. A loud noise came from the burnt out television. I thought he would jump or cry, but he did none of those things. Although, his gaze drifted away, he remained silent.

-Ms. Smith and her husband John, who are European-Americans, joined two other parents in a lawsuit against the hospital, the Oklahoma Department of Social Services, administrators in both institutions and the doctors and social workers who conducted the study. Cheparney Camp, a Native American, sued over the death of his daughter Melissa, and Sharon Jackson, who is African-American, sued on behalf of her son Carlton. Carlton, in the words of attorney Jane Brockman, "beat the odds." He survived for months in a children's center, where the nurses and attendants cared for him. Eventually, Ms. Johnson insisted that he be treated. However, the months-long delay caused him to develop more severe impairments than he would have sustained if he had been treated within 48 hours of his birth - which is standard procedure.-

I picked him up. Well I tried to pick him up. The squirming thing wouldn’t let me at first. I always wonder if they know. They must know. But they seem to not mind. His dark eyes were telling me just to get it over with. Just to end this. He was heavier then he should have been because of his diaper. Every part of him smelt like shit. The shit that flowing from his diaper matched the carpet, matched the house, matched the cockroaches crawling on my feet.

-Sadly, the lawsuit was unsuccessful. The National Legal Center for the Medically Dependent and Disabled, in conjunction with Oklahoma attorneys, represented the plaintiffs through nearly 10 years of hearings and appeals, before the Supreme Court decided, last January, not to hear the case. The plaintiffs began in the Federal Courts with an 11-count complaint, charging wrongful deaths, malpractice, violations of fundamental Constitutional rights, a failure to inform the families that they were participating in an experiment, discrimination under Section 504 of the Rehabilitation Act and other violations of Federal law. Between 1983 and 1990 the courts threw out all the counts. When the Supreme Court refused to reinstate the Section 504 complaint in January, they ended the long legal battle.-

This child should not have been born and the little fucker knew that. He was probably in pure agony most of his short life. He probably would grow up to become nothing more then fuck up, who hated his life, and blamed it on his parents, as he should. Why would they just not get rid of him. Why did they have him? In such a poor income home, with such a poor quality of life, he was given the chance to decide if this is what he wanted. He didn’t. You could tell. I slide his shirt off. And with one hand pulled the disgusting diaper away from his body and threw it to the floor. The roaches scattered like rats.

-"What the Supreme Court could have done by recognizing we had a viable complaint under Section 504 was to send a message to hospitals all across the country, and physicians across the country that you *will* have claims against you if you discriminate against the disabled child in a situation where the treatment is related to that disabling condition," says Jane Brockmann, one of the National Legal Center attorneys who handled the final stages of the case. "We could have scared physicians across the country away from what these physicians did."-

Some times I believe people were not meant to be born. It was someone’s selfish decision and now that person was born to suffer. Wait. I don’t believe, I know some people weren’t meant to be born. Alex was one of them. He suffers inside. He is not human being, he is someone’s self need to find themselves. You can see it in his eyes. There was something missing. Just like this child, he didn’t want life from the beginning.

-Readers of "The Rag" will recall that the European Holocaust of World War II began with the government-ordered murder of persons with physical and mental disabilities, most of whom were killed by their own doctors. This program began two years before World War II and claimed the lives of over 100,000 Germans with disabilities. Ever since the full scope of the Nazi racial crimes was revealed, Americans have insisted to the world that the mass murder of "undesirables" under the authority of State and Science is a crime of which we are not capable.-
I walked to the kitchen, which was full of beer cans and rotting bottles. There was not much else to see. It was dark and when I turned on the light, it only gave a hint of what the kitchen really was. There were no rags, or paper towels, so I moved on, back to living room. In his diaper bag I found a blanket. It smelt of formula. It wasn’t the real thing. I had had a clue. It was yellow, stained white. For a moment I wished it clean, then decided against it. I laid the blanket over the baby, and picked him up in my arms. He didn’t squirm and almost felt dead weight. Still staring at me, I began to think that maybe I shouldn’t do this. Maybe I should take the baby away. Throw him on some high end street where an old rich grandma would pick him up and carry him away to a better life. But the look in his eyes told me not to.

-Indeed, if there is a difference that stands out between the attitudes of the German doctors who murdered their own patients and the "researchers" at the Oklahoma Children's Hospital, it is this: the German doctors acted in secret, knowing that their crimes must not be exposed. They hid their killings behind an elaborate arrangement of phony death certificates and other official paperwork. The Oklahoma doctors, on the other hand, proclaimed what they had one openly, in the most prestigious medical journal of their specialty. They understood the attitude of the American public towards persons with disabilities. Evidently, they understood it better than we disability rights activists do today! They knew that any furor over their crimes would dissipate without harming their careers, and they knew that in the end their colleagues would admire and emulate them.-

It was time. I peaked at my watch from around the child. They would be home in an hour, and I didn’t have much time. I wasn’t planning on cleaning, but I didn’t drive. I kissed the babies forehead then looked around. All I had to work with was a wall. The TV itself was to heavy to pick up. The toys seemed to confuse me and would only make matters worse. I decided at least the wall had no roaches on it.

-"We are beginning to see hospitals going to court, trying to establish ..rights' for themselves," says Ms. Brockmann. "Hospitals are seeking the right not to treat some patients." Of course, these patients are persons with disabilities who require expensive, intricate and sometimes long-lasting treatment. In extreme cases, hospitals have sued to have a legally competent parent or spouse removed as the guardian of a person with a disability, so that a new guardian can be appointed to discontinue treatment. Ms. Brockman sees a trend in the courts: "It seems that when a patient with severe disabilities sues to request that treatment be withheld, the courts are inclined to grant that request; but when someone sues on behalf of such a patient in order to continue treatment, they will have an uphill battle. Treatment should be the default decision in ambiguous cases. The Constitution expressly protects the right to live. As Congress begins to debate the role of rationing in health care reform, the court will no doubt rule on more "right-not-to-treat" cases.-

I let one of my arms relax and let go. The right one. I was holding the child upside down from his feet. Still he did not cry. I began to feel like I owed him something for being so compliant. I dug in my pocket and found a Xanax, an old one, but just as good. Laying the baby on the floor I crushed it up with the bottom of his bottle, on the TV. The xanax was strong, the strongest you can get. He may just die from that alone. I put the powder in my palm then opened the babies mouth and poured it in. He coughed but didn’t cry. I gave him a bit of his bottle. And held him close to me until his eyes closed.

-Today Carlton Johnson, the boy who "beat the odds," is 10. He attends a segregated educational program for children with disabilities, where he is making progress. He does not communicate by speaking, but he is an alert, active and competent child who wheels himself about and plays for hours on an electric organ his family gave him. He recognizes friends and loved ones. He has the capacity for enjoyment and happiness. His life may not be "useful" according to the pseudo-mathematical standards of the of the doctors who once condemned him to death, but he has one great advantage over the men and women who once plotted to deprive him of his life. He will never, ever commit an act of injustice towards another human being as great as the crime they committed against him.-

He was still breathing. He would be. He would have survived maybe. But for now, he was out cold. I know he couldn’t wake under any event. Again I grabbed him by his feet upside down. And stood maybe five feet from the wall. I took a breath and closed my eyes. This should have been Alex. Alex as a baby. He wasn’t suppose to be here. He was suppose to be an abortion. There was no interference with God, therefore he does not exist. I was playing god. I was playing doctor. And with all my might I swung the baby by the feet and smashed his head into the wall. He never woke the whole time I did this. Only small gurgling sounds came from him. I would pick him up and do it over and over, until I felt no pulse. He was gone. Before he knew the world, before he did this himself, he was dead. Looking at him on the ground, a smile edged his lips.

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