Happy Correction: Intern. Fed. for Spina Bifida and Hydrocephalus Are Active Opponents of Infanticide

The day after I posted the last blog entry, I received a friend request and a message from Renée Jopp, who works with the International Federation for Spina Bifida and Hydrocephalus (IFSBH).

His note was friendly and reminded me of something I should have already known. It's not true that all advocacy organizations associated with hydrocephalus and spina bifida have ignored the issue of infanticide.

That may be a uniquely American characteristic, but I don't know for sure.

To the point, the IFSBH has a strong position paper on the Dutch infanticide program. I wasn't asked to do a correction or to share that information.

I'm correcting myself and sharing this because it's the right thing to do. I wish all my screw-ups were ones that resulted in happy corrections like this one.

This link contains a summary of the organization's activities in terms of opposing euthanasia of newborns with spina bifida and hydrocephalus:

BOSK, IF's Dutch member organisation, wrote a letter to the Dutch government opposing against the Groningen Protocol and the proposal to institute a specific committee to judge if doctors handled carefully. To read the English translation of this letter, click here.

IF also wrote a resolution on Active Termination of Life of Newborn Children with Spina Bifida and/or Hydrocephalus and the Right to Live. This document was unanimously adopted by IF's Annual General Meeting on 30 June 2006 in Helsinki.

At the same time, IF took the lead in drafting an EDF resolution on this matter concerning newborn children with all sort of disabilities. The EDF resolution on Active Termination of Life of Infants with Impairments and the Right to Live was adopted by the EDF Annual General Assembly in May 2006.

The right to live is also specifically stated in the UN Disability Convention which was adopted in December 2006.

In 2009 public interest lawyer James E. Wilkinson spent his summer working as an IF volunteer, researching international human rights arguments against euthanasia of children born with severe disabilities. The IF Position Paper on the Groningen Protocol examines the key factor for the Protocol and similar decision-making, the anticipated “quality of life” for an infant with impairments. The paper concludes that practices, like the Groningen Protocol, that counsel parents that it is best for babies to die because they have severe impairments, violate international human rights standards.

In January 2010 Dutch paediatricians suggested to extend the Groningen Protocol with the criterion "future unbearable suffering". They claim that newborns are now dying of starvation, because doctors fear prosecution when they end the life of a newborn with severe disabilities who is not suffering at birth, but will be in the near future. Both BOSK and IF both responded with press releases. Read the article that was published in the Belgium weekly Tertio.

Most of the organization's material is in pdf format - I'll see if I can get excerpts from some of the documents posted here at a later date. --Stephen

Selecting Kids with Spina Bifida and Hydrocephalus for Death - Oklahoma, 1977-1982

By now, my lapses in posting to this blog are so predictable that probably apologies are unnecessary. Any attempt would be met with some justifiable scepticism by anyone who has checked the blog from time to time. Apologies usually carry a suggestion one will improve one's past performance - I know better than to offer such promises.

Even today's posting is something of a cheat. I am using this blog as something I can link to on the NDY blog, where I'll be writing about some current suggestions that euthanasia of some children should be legalized. The reasoning is that - since some parents are requesting it and some doctors are doing it - we should make it legal. Somehow, it is reasoned, this will make the practice more open and safeguarded than it is now.

This is not a new argument. Over the past 80 years or so, people with hydrocephalus - especially children - have featured prominently in discussions of what lives are worthy of the medical efforts expended to keep us alive. In fact, when doctors in the Netherlands announced a new "protocol" for killing "seriously ill" infants, all of the babies listed who had been killed had spina bifida and hydrocephalus.

This seems to be a taboo topic at hydrocephalus conferences - spina bifida conferences, too. I am not sure how to explain it. Some of it could be some sort of unacknowledged survival guilt, perhaps. It could also be that many of the organizations "advocating" for people with spina bifida and/or hydrocephalus are dominated by parents and medical professionals. Perhaps it's taboo because some parents have conflicted feelings on the subject of ending the lives of disabled infants. And medical professionals don't ever enjoy criticism of their profession - even if they themselves object to the viewpoints and practices under attack.

Below is a very important chapter in the social, legal and medical history of hydrocephalus and spina bifida. It's a shameful and long episode from a hospital in Oklahoma.

And while this story is pretty well-known in the disability rights community, you'd be very hard pressed to find a discussion of it in a bioethics textbook.

Enough from me - here's the article as it appeared when I posted it online over ten years ago:


This article is taken from The Disability Rag and ReSource vol 15 no. 1 (Jan/Feb) 1994 (pp. 16-18). Advocado Press: Louisville, KY. It is reproduced here with the permission of Advocado Press and the author. (During its 16-year run of publication, it was also titled "The Disability Rag" and "The Ragged Edge" at different times.) The online archives of "The Ragged Edge" can be found at: http://www.ragged-edge-mag.com/.

It Can Happen Here
by John R. Woodward

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.

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.

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.

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.

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.

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.

"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."

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.

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 died in an accident.)

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).

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.

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.

"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."

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.

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 done 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.

"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.

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.

Further reading: "The Civil Rights of Handicapped Infants," by M.H. Gerry, in Issues in Law and Medicine, a 1985 publication of the National Legal Center for the Medically Dependent and Disabled. The article reporting the results of the "study" is "Early Management and Decision Making for the Treatment of Myelomeningocele," by R.H. Gross et al, in Pediatrics, Vol. 72, 1983.

Update: Hartford Courant Columnist Says it's Time Richard LaPointe Gets a New Trial

Readers of this blog might recall an earlier post about Richard LaPointe, a man with hydrocephalus and associated neurological issues, who is currently in prison after being convicted in the murder and rape of his wife's grandmother. There are lots of serious doubts about the case - including the "confession" that LaPointe gave (his third after two attempts to get the details in that the police wanted).

I received an update today from Bob Perske, who has been fighting along with others to get Richard LaPointe a new day in court. You can read more about Bob Perske in the link above - his advocacy for Richard LaPointe is just one chapter of a long career of dedicated advocacy for the rights of people with developmental disabilities.

The news from Bob is that Richard has a new hearing in May. Rick Green, a columnist at the Hartford Courant, writes that maybe - just maybe - this hearing will result in what LaPointe deserves: A new trial:

One of the nation's most notorious examples of alleged wrongful conviction will soon return to center stage, perhaps finally providing an answer to a disturbing question.

Could convicted killer Richard LaPointe really have raped and murdered Bernice Martin?

Perhaps LaPointe's last shot at freedom will come in a Rockville courtroom this May, when a judge will consider evidence that his supporters say proves he deserves a new trial.

The May hearing could lead to freedom for the mentally disabled man who was found guilty in 1992 of the rape and murder in Manchester of Martin, his wife's 88-year-old grandmother.

The result will say plenty about justice in Connecticut. There has been no willingness by authorities to re-examine the questionable circumstances surrounding LaPointe's conviction.

The questions begin with the blind acceptance of a confession from a man with an I.Q. of 80 and extend to the exclusion of critical evidence and the incompetence of LaPointe's previous lawyers.

The evidence against LaPointe, now 64, in the 1987 crime is impressive — three confessions and a failure by his supporters to prove, despite repeated attempts, LaPointe's innocence.

But now, because of a state Appellate Court ruling last year, which overturned a lower court's ruling dismissing LaPointe's bid for a new trial, a Superior Court judge will review whether critical exculpatory evidence — an expert's analysis of the "burn time" of the fire that was set by the killer to cover up the murder — was not disclosed by the state.

"The state suppressed evidence. [LaPointe's] lawyers were ineffective. They didn't make use of the evidence that shows he didn't commit the crime," said Paul Casteliero, a lawyer for LaPointe. "The jury should have been aware of that."

"It is mind-boggling to me. The state never fixes a time when this whole thing happened."

Casteliero says that the evidence, in the form of notes from an arson investigator, doesn't fit the state's scenario for the murder on the evening of March 7, 1987. He said the notes suggest that the fire that Martin's killer set after the murder had burned too long for LaPointe to have quickly assaulted and murdered Martin and then calmly returned to his nearby home for an evening of television watching.

Chief State's Attorney Kevin Kane declined to comment about the case because it is a pending matter.

The state Appellate Court, in a ruling last year that represents the first victory for LaPointe in the decades-old case, noted that if the fire had been burning for 30 to 40 minutes — instead of a much shorter period — then a potential, if thin, alibi emerges:

"There was sufficient evidence presented ... to establish the potential exculpatory nature of a burn time estimation because evidence was submitted that, if credited, tenuously would have established an alibi for the window of time created by this burn time estimation."

The state's unwillingness to reconsider is no surprise, said Kate Germond, an investigator and associate director of Centurion Ministries, which works to reverse wrongful convictions.

"They hang on pretty tenaciously to these cases. I think they are used to having their own way. Their impulse is to circle the wagons."

"This case in particular really gnaws at us," said Germond, whose group is actively involved in about 20 cases throughout the country. "Richard is getting older. His life expectancy isn't as long as you and I might enjoy."

A new trial for LaPointe is long overdue.

Because if LaPointe didn't do it, this is more than a case of the system taking advantage of a hapless disabled man.

The real killer may have gotten away with murder.

That last sentence is the part that people seem to miss when they get angry over wrongful conviction cases. Two miscarriages of justice - the innocent is jailed and the guilty stays free.

"Writer's Logjam" - Worse than a "block" in many ways

I have a case of "Writer's logjam." At first, I thought I was lucky and clever enough to coin the term on my own, but I guess it's no surprise that at least one person has used the term and gives a pretty good description of what I'm dealing with at the moment:

This is really interesting because here, a person doesn't have enough ideas, they have way too many.

They start on one, go to another, and another, nothing gets ever finished and all those unfinished projects pile up and cause a logjam - and nothing moves at all any longer.

Not knowing that this is so, writers will DESPERATELY try to get MORE AND MORE ideas, thinking they've run out, and that makes the logjam ever worse until not a trickle gets through the dam any longer and we really have now absolute writer's block.

The solution for this is to take any one of THE OLD PROJECTS at the base of the logjam and to FINISH IT.

Obviously, I'm writing here, so you might be thinking "what's the big deal?"

The big deal is that I should be writing something on the other blog - the one I do as part of my job.

But I have a problem. Last week included disrupted sleep patterns and time off so I could catch up with housework left undone while returning from the trip to Connecticut. Monday involved more disrupted sleep and then a sick day yesterday.

In the course of a week, at least four big things have come up related to my NDY work. I am full of ideas about how to write about each and every one of them. They are all important. And they are all currently tangled up in my head as I try to sort them out and figure out where to even start. And, of course, if I don't write anything today, my dilemma will be even worse tomorrow.

It suddenly occurred to me that one way to get something accomplished was to write about the current struggle here on this blog. That way, at least I'm writing again and not just obsessing about what I'm not writing.

The best case scenario is that this will somehow unstick my mental gears (alert: switching metaphors here) and I can get started on my other tasks.

The worst case scenario is that whatever I write here will be all I write today. But at least that will be better than the alternative.

This is far from the first time I've been in this situation. I know it won't be the last.

If anyone has any ideas for getting through these logjams (alert: back to original metaphor), I'd be open to hearing them.

I still have an hour or two left in the day. Maybe I can do better than just stare at the screen - I know that would make tomorrow easier. --Stephen

Back from the road and glad to be home

The trip to Connecticut went well, but the driving was a major challenge.

OK, back up a minute. I don't want to overstate the case. I can still drive safely and well on a highway in the daylight. I have the necessary concentration, reflexes and attention-shifting to drive (and all the associated motor tasks in operating a vehicle), but I don't seem to have a lot left over. Once in awhile, I'll sneak a sip of iced tea from the travel cup in the holder - it has the top kept open - but that's about all I'll dare in terms of extraneous activity.

Still, it didn't seem that hard while I was doing it.

At night, my body told me a different story.

Most of the time when I am in a hotel or motel, I am restless and don't sleep all that well, especially if I am keyed up about speaking.

This time was different. After 7 hours on the road getting to our destination, I pretty much fell asleep very soon after my head hit the pillow. I struggled to get up after a full seven hours of sleep.

We drove part way home on Friday. I spent about four hours on the road (total times always include breaks). Pulled off the road around 5 pm at the Herkimer Motel & Suites in Herkimer, NY. I am naming the motel and providing a links because I recommend it highly. It's well-kept up, has helpful staff and has one of the best wheelchair-accessible rooms we've stayed in. If the opportunity arises, I'd gladly stay there again.

We went to bed early that night. I got a wake-up call and went to turn the heat up. I figured I would wake up again in about 20-30 minutes when it got too warm.

I slept for an additional 90 minutes. That means I slept between 8.5 and 9 hours. That is very very unusual for me. My body is usually satisfied with seven hours and maybe a few minutes more.

The only explanation I have for this is that the driving really really exhausted me. Strange, though, because I didn't really feel that exhausted. But my sleep pattern tells a different story.

It's just one more thing to factor in from now on. Looks like if I have to drive for a long distance, I better build in some extra sleep time.

OTOH, as you might gather from this blog post, the trip didn't throw me too far off my work rhythm.

This is a good thing. I have lots on my plate these days and really don't need to be falling behind more. --Stephen

On the road again...

*Sigh* Time for another road trip.

Diane and I are giving a presentation in Connecticut on Friday. Theoretically, it's a five-and-a-half hour drive or so.

I'm guessing it will be closer to seven hours. I need to take breaks when I drive.

Also, even though we're finishing up around 1 pm on Friday, we won't get home until Saturday.

I'm not sure if I've mentioned it here, but I've ceased highway driving in the dark (except for short trips close to home when necessary). It just takes too much effort.

So hopefully I'll get us to Albany by dark on Friday and we can get home around noon on Saturday.

Just so no one misunderstands me - I am looking forward to meeting with some of the people that will be attending and the opportunity to do some organizing work.

OTOH - I really loathe long-distance driving. I don't like having the rhythm of my life get disrupted - it can take too long to get it back.

I can't complain really. This means that there are people who feel that I have information and insights on disability policy issues worth hearing firsthand. And NDY needs more people in the disability community more attuned to the intricacies of the assisted suicide/euthanasia debates.

In a perfect world, I'd be able to do advocacy without ever leaving my home or office.

I don't live in that world, however. So I'm going to Connecticut. :-) --Stephen Drake

I'm getting too old for this

If I haven't spelled this out before, I have to pay a lot more attention to what my body is doing than most people do. That includes major things like driving, minor things like scooping coffee into the filter in the coffee maker, and potentially disastrous things like walking down the stairs.

When it comes to our basement stairs, I have rules. I go slow. I watch my feet. I have at least one hand free to hold the railing. I pay attention to the act of going walking up or down the stairs and try not to get distracted.

Sunday night, I broke all the rules. We had a minor plumbing disaster - turns out the garbage disposal was loose, which vibrated the heck out of the PVC sink pipes. The sink pipes came apart in two places. Water everywhere.

First, I cleaned up that water on the kitchen floor. Then I called our plumber friend who said he could come out the next day. After that, I went to clear out the cupboard under the sink.

I had the bright idea to put some of the stuff from under the sink on the wall shelf on the cellar stairs. I gathered up a bunch of stuff in both hands and started down the stairs. I made it about four steps down when my feet went out from under me and I slid down - hard - for a few steps. My sneakers were wet and the steps are bare wood - bad combination.

Oddly enough I didn't drop anything. I did bang my left ankle and skinned both my elbows. After setting things on the shelf, I went back up and washed my elbows. They were sore.

I was a little leery of the stairs after that, so I found a box and filled it with the rest of the stuff in the cupboard and stuck it in the back bedroom.

As the evening progressed, I became aware of more aches and pains - took some aspirin and a muscle relaxant and went to bed.

The next morning, my left elbow was causing me lots of trouble. As long as my arm was extended, it wasn't too much of a problem. But the more my arm flexed, the greater the pain - to the point where blowing my nose with two hands was almost impossible. After a great deal of research during the day, I decided the likeliest thing was that the injury had resulted in olecranon bursitis.

You can read the description if you're interested, but it explained the pain and swelling. And I changed the treatment from aspirin to alleve. The elbow started to improve and I can blow my nose again. :-)

So - within the next week or two, I'll be getting some kind of non-slip material for the cellar stairs. And I'll probably be better at following my rules.

The thing is, no is perfect in adhering to a routine or set of rules - me included. Stuff like this happened to me when I was in my twenties and thirties, but I was a lot more flexible then.

It hurts a lot more now. Gotta start getting serious about "Stephen-proofing" the house. --Stephen