Saturday, November 24, 2007

T4 or T21...clinical terms for real people

Here is the beginning of my post. And here is the rest of it.

I have always had a visceral reaction to hearing the term "T21" used to describe Down syndrome. I recoil at it actually, although I recognize that my feelings are not the same as those of other parents of kids with Down syndrome, like my daughter. T21 to me denotes something cold and clinical, but it goes deeper than that. Until today, I had always just accepted that feeling, and never bothered to explore it further. WHY does it make my teeth grit together and anger come pouring out of me? Today, it suddenly struck me.

You see, I am a history buff, and a voracious reader. I remember as a very little girl reading books about the Holocaust and the children who did and did not survive it. I was fascinated by their courage, heartbroken by their tragedies. My favorite book as a little girl was "Escape From Warsaw", I have no idea who wrote it, but I would love to read it again. I remember the characters, though, big sister Ruth and brother Edek...(I have forgotten their little sister's name.) In the story they wander through the war, trying to get back home. I think I grew up with a very powerful sense of empathy in large part because of my beloved books. "I Am David" was another. In the books, the children were always trying to get back to families who adored them. I read lots of other books that did not have happy endings, most were true stories, they were all devastatingly difficult to comprehend. All of them sought to explain the damage inflicted on people whose only crime was being born a certain way, whether Jewish or disabled, or a twin.

Long before I had Ciarra, long before DS became a personal term to me, I had read the horror stories about Josef Mengele and his cohorts Philipp Bouhler, the head of Hitler’s private killing machine, and Dr Karl Brandt, his personal physician.

Action T4 (German: Aktion T4) was a program in Nazi Germany officially between 1939 and 1941, during which the regime of Adolf Hitler systematically killed between 75,000 to 250,000 people with intellectual or physical disabilities. Performed unofficially after 1941, the killing became less systematic. The codename T4 was an abbreviation of “Tiergartenstraße 4”, the address of a villa in the Berlin borough of Tiergarten which was the headquarters of the General Foundation for Welfare and Institutional Care.

In May 1939, when Hitler had already determined to attack Poland in the summer or autumn of that year, the parents of a severely deformed child born near Leipzig wrote to Hitler seeking his permission for their child to be put to death.[19] Hitler approved this, and authorised the creation of the Reich Committee for the Scientific Registering of Serious Hereditary and Congenital Illnesses, headed by Karl Brandt, his personal physician, and administered by Herbert Linden of the Interior Ministry and an SS officer, Viktor Brack. Brandt and Bouhler were authorized to approve applications to put children in similar circumstances to death.

This precedent was used to establish a program of killing children with severe disabilities from which the guardian consent element soon disappeared. From August the Interior Ministry required doctors and midwives to report all cases of newborns with severe disabilities. Those to be killed were "all children under three years of age in whom any of the following 'serious hereditary diseases' were 'suspected': idiocy and mongolism (especially when associated with blindness and deafness); microcephaly; hydrocephaly; malformations of all kinds, especially of limbs, head, and spinal column; and paralysis, including spastic conditions." The reports were assessed by a panel of medical experts, of whom three were required to give their approval before a child could be killed.

Various methods of deception were used to gain consent – particularly in Catholic areas where parents were generally uncooperative. Parents were told that their children were being sent to “Special Sections” for children where they would receive improved care. The children sent to these centres were kept for "assessment" for a few weeks and then killed by lethal injection, their deaths recorded as "pneumonia". Autopsies were usually performed, and brain samples were taken to be used for medical research. This apparently helped to ease the consciences of many of those involved, since it gave them the feeling that the children had not died in vain and that the whole program had a genuine medical purpose.

Once war broke out in September 1939, the program became less rigorous in its process of assessment and approval. It expanded to include older children and adolescents. The conditions covered also expanded and came to include "various borderline or limited impairments in children of different ages, culminating in the killing of those designated as juvenile delinquents. Jewish children could be placed in the net primarily because they were Jewish; and at one of the institutions, a special department was set up for 'minor Jewish-Aryan half-breeds'". At the same time increased pressure was placed on parents to agree to their children being sent away. Many parents suspected what was really happening, especially when it became apparent that institutions for children with disabilities were being systematically cleared out, and refused consent. They were threatened that they would lose custody of all their children, and if that did not suffice the parents themselves could be threatened with call-up for "labour duty." By 1941 over 5,000 children had been killed.

T4 was the name of the program that set about dehumanizing children with Down syndrome in the eyes of the community. It's goal was to make the children seem so different, so expendable, that they were defined by their clinical diagnosis. They were expendable. T21 is the clinical name given to children with Down syndrome today. Many of the parents who prefer the term do so because they dislike the term "Down syndrome", for although Down was the name of the Doctor for whom the syndrome is named, the term denotes a negative-sounding description that doesn't sit well with many.

fast forward to today. Princeton University has as it's ETHICS chair a gentleman by the name of Peter Singer. The esteemed Mr. Singer has this to say about Down syndrome:

His 1994 book Rethinking Life & Death, whose aim is to articulate "a social ethic where some human lives are valued and others are not" (p. 112), recapitulates the arguments in favor of selective infanticide outlined above. There he endorses the view that "it is ethical that a child suffering from T21...should not survive" (p. 123) because "the quality of life of someone with T21 [is] below the standard at which medical treatment to sustain the life of an infant becomes obligatory" (p. 111; in Singer's terms "treatment to sustain life" doesn't refer merely to surgical intervention but to simple feeding as well). This "quality of life" reasoning is sometimes cast in more colorful terms; in Should the Baby Live? Singer quotes, entirely approvingly, the grandmother of a Down syndrome child: "Had the poor little mongol been allowed to die, as he so easily could, my daughter might have had one or two healthy children in his place" (p. 66). Singer goes on to suggest lethal injection "in the case of a Down syndrome baby with no other defect" (p. 73).

Today, in America, our children are raised at home. We keep them safe with us, and out of the hands of those who would do them harm. For the most part, they are treasured members of society. But there are still those who believe that the best place for a kid with Down dead. Abortion rates have skyrocketed. Prenatal diagnosis has taken the place of the institutions and killing fields like Hadamar. But just out of reach, there is an unspoken awareness, an imperceptible threat...the world is not always welcoming for children like mine. Ciarra survived the prental time, when 90% plus of kids prenatally diagnosed are exterminated. She is thriving, loved, and welcomed in our world. By most everyone. But there is still a sense of urgency in me, an awareness that her life is not welcomed by many people. An awareness that terms like "T21" can dehumanize her and seperate her. And in me, there is the awareness that the world is not always good and decent, a knowledge in the core of me that T4 and T21 are not so very far apart, after all.


Christina said...

Reading this brings back memories of reading our chromosonal test results on Jake. It read "abnormal male" -- positive for Trisomy 21. "Abnormal male?" Is that any way to describe any human being let alone a child that has not even been born yet? I will never forget reading those words about my precious baby boy...

burtonv said...

I found your blog while researching the agenda of the nasionalist socialist party in America.
Have some friends with an autistic child , not too different as far as social acceptance. The way our nation is moving now scares me for my kids reguardless of their condition.
What scares me more is that the same Hitler notions seem more and more preferable by many in our society.
Enjoy what you have each and every day, many are not as fortunate as you, and be activly vigilant in the protection of your child. the promotion of Eugenics is alive and well in the USA