Sometimes forgotten history needs to be remembered, no matter how painful. In the HD community, we often get upset with older generations who hid the knowledge of HD in the family. We feel frustrated over misdiagnoses and diagnoses that were delayed by years because family medical histories were unknown. Phil's article reminds us of just why older generations kept secrets. In the 1930s in the U.S., the consequences were stigma and possibly forced sterilization. In Hitler's Germany, the consequences were lethal.
There is nothing wrong with family planning, in choosing not to have children or using medical technology such as PGD to avoid passing on the HD gene or any other disease gene. But there is something very wrong in societies making value judgments about individual worth and removing choices from others. Those societies start off by devaluing some of their own citizens and end by destroying themselves.
The consequences of choosing to help others on the other hand are profound, both on the individual level and on the societal level. When we volunteer, we get more than we give in personal growth and friendship and so many other benefits. A society which values its elderly and cares for the disabled is a strong, healthy, thriving society which can tap into the wisdom of its elders and the creativity of its diversity.
People in HD families tend to be wonderful volunteers who help when they can. I have always been impressed with the way people with the disease who cannot keep up the pace of the work world anymore turn around and ask, what can I do as a volunteer? A few years ago I read of a former firefighter who was disabled from HD but nevertheless managed to go in and save the inhabitants when he spotted a burning house on his daily walk.
And while we are concerned when at risk young people are struggling, we have also seen that knowledge that one's time could be limited can lead to a very constructive desire to make one's contributions early as Arlo Guthrie did with his wonderful gift of music.
Today the HD community is raising money for research and volunteering as participants. The end result will not only lead to treatments and a virtual cure someday but the knowledge gained and the treatments and medical technology developed will benefit people with other diseases, both genetic and neurodegenerative and will lead to improvements in the quality of life of everyone as they age.
-- Marsha L. Miller, Ph.D.
Nazi Racial Hygiene
Two weeks ago, while my fianc? Dina and I were in Washington D.C., for advocacy training, we took time to visit the United States Holocaust Memorial Museum and found something very interesting about Huntington’s Disease.
While proceeding through the chronological exhibits Dina happened to read about the July 14, 1933 Sterilization Law, one of the first laws Hitler implemented after ascending to power and taking control over Germany. It was called the “Law for the Prevention of Genetically Diseased Offspring” (Gesetz zur Verh?tung erbkranken Nachwuchses) and consisted of compulsory sterilizations. This was a bold attempt at “racial hygiene” – the Nazi Party’s belief that the German people needed to be “cleansed” of “racially unsound” elements, which included people with disabilities.
Perhaps, when you reduce a human being to nothing more than an “element,” they somehow become easier to abuse and later kill.
Article I of the “Law for the Prevention of Genetically Diseased Offspring” defines who was to be examined and then sterilized: (1) Anyone who suffers from an inheritable disease may be surgically sterilized if, in the judgement [sic] of medical science, it could be expected that his decendants [sic] will suffer from serious inherited mental or physical defects. (2.) Anyone who suffers from one of the following is to be regarded as inheritably diseased within the meaning of this law:
- congenital feeble-mindedness
- congenital epilepsy
- inheritable St. Vitus dance (Huntington's Chorea)
- hereditary blindness
- hereditary deafness
- serious inheritable malformations
(3.) In addition, anyone suffering from chronic alcoholism may also be sterilized.
( http://www.jewishvirtuallibrary.org/jsource/Holocaust/nurmlaw1.html ) Medicine, Ethics, and the Third Reich – Historical and Contemporary Issues , by John J. Michalczyk, that we found in the Memorial Museum’s bookstore, also documented the same nine diseases.
We were flabbergasted and deeply disturbed to see Huntington’s Chorea (now called Huntington’s Disease) listed as one of the nine diseases that were targeted for sterilization. My heart immediately went out to everyone in Germany at this time who had Huntington’s and wondered what it would have been like to have been sterilized against my will.
“The law was signed in by Hitler himself, and over 200 eugenic courts were created specifically as a result of the law. Under the German law, any doctor in the Reich was required to report patients of theirs who were mentally retarded, mentally ill (including schizophrenia and manic depression), epileptic, blind, deaf, or physically deformed, and a steep monetary penalty was imposed for any patients who were not properly reported. Individuals suffering from alcoholism or Huntington's Chorea could also be sterilized. The individual's case was then presented in front of a court of Nazi officials and public health officers who would review their medical records, take testimony from friends and colleagues, and eventually decide whether or not to order a sterilization operation performed on the individual, using force if necessary.”
“Special hereditary health courts lent an aura of due process to the sterilization
measure, but the decision to sterilize was generally routine. Nearly all better-known
geneticists, psychiatrists, and anthropologists sat on such courts at one time or
another…Vasectomy was the usual sterilization method for men, and for women, tubal
ligation, an invasive procedure that resulted in the deaths of hundreds of women.
( http://www.ushmm.org/wlc/article.php?lang=en&ModuleId=10007057 )
One of the individuals who sat on these courts of hereditary health, also called "Erbgesundheitsgerichte,” was Professor Karl Kleist. He was interviewed by Major Leo Alexander, M.C., AUS, in his report titled “Public Mental Health Practices in Germany, Sterilization and Executions of Patients Suffering from Nervous or Mental Disease,” dated 19 August, 1945. While being interviewed, Professor Kleist gave his personal opinion on which cases he believed the forced sterilizations were acceptable: “The only instances in which I regarded sterilization as justified was in Huntington’s chorea, in severe mental deficiency, and in severe cases of epilepsy". (http://www.ess.uwe.ac.uk/genocide/alexrep1.htm#Sterilization )
Fellow Person’s with HD (Phds) aren’t you glad you didn’t live in Germany then!
“By the end of World War II, over 400,000 individuals were sterilized under the German law and its revisions, most within its first four years of being enacted. When the issue of compulsory sterilization was brought up at the Nuremberg trials after the war, many Nazis defended their actions on the matter by indicating that it was the United States itself from whom they had taken inspiration.”
( http://www.ushmm.org/wlc/article.php?lang=en&ModuleId=10007057 )
|'We do not stand alone' Nazi poster from 1936 with Flags of other countries with compulsory sterilization legislation.|
Was the United States “guilty” as accused?
”Some physicians outside Germany also held the view that many social ills were the results of the hereditary degeneracy of certain sections of the population. Even before the Nazis came to power in Germany twenty-eight states in the United States had passed compulsory sterilization laws resulting in the sterilization of 15,999 people, the total had more that doubled by 1939. Over 60,000 people had been sterilized under the U.S. compulsory sterilization laws before they became mostly unused in the 1960s. Many people were sterilized as children and did not know what had been done until they tried to conceive as adults.” ( http://en.wikipedia.org/wiki/Compulsory_sterilization )
This horrifying practice of sterilizing individuals with mental handicaps, including presumably Huntington’s Disease had unfortunately grown its roots in American soil first! “Which country pioneered forced sterilization in the 20th century, Germany or the United States of America? The German program began in January 1934, but the U.S. state of Indiana passed a forced sterilization law (for mental defectives) in 1907 (when Adolf Hitler was 18 years old). Before the German program began, at least seventeen U.S. states (including California) had 'forced sterilization' laws.” (The Surgical Solution, Philip R. Reilly)
One prominent example of those who were fighting for forced sterilization here in the United States was Margaret Sanger, founder of Planned Parenthood. She stated her views in “A Plan for Peace,” that appeared in the April 1932 semi-annual edition of “Birth Control Review,” one year before Hitler’s terrible forced sterilization law was enacted. In it she advocates for the United States to “apply a stern and rigid policy of sterilization and segregation to that grade of population whose progeny is tainted, or whose inheritance is such that objectionable traits may be transmitted to offspring.“ (emphasis added)
|A poster from a 1921 enugenics conference proudly displayed which U.S. states had by then implemented sterilization legislation.|
image courtesy of http://en.wikipedia.org/wiki/Compulsory_sterilization
Later, in a speech given to the New History Society, January 17th, in New York City, she elaborates exactly what she would do to rid America of so called mental “defectives” and “degenerates:”
e. to insure the country against future burdens of maintenance for numerous offspring as may be born of feebleminded parents, by pensioning all persons with transmissible disease who voluntarily consent to sterilization.
f. to give certain dysgenic groups in our population their choice of segregation or sterilization.
g. to apportion farm lands and homesteads [like concentration camps] for these segregated persons where they would be taught to work under competent instructors for the period of their entire lives.
The first step would thus be to control the intake and output of morons, mental defectives, epileptics... With the future citizen safeguarded from hereditary taints, with five million mental and moral degenerates segregated, with ten million women and ten million children receiving adequate care, we could then turn our attention to the basic needs for international peace.
I believe that national health is the first essential factor in any program for universal peace.” (emphasis added)
(“Margaret Sanger, Sterilization, and the Swastika” by Mike Richmond)
From Sterilization To Murder
However, in his quest for racial cleansing, Hitler decided that forced sterilization wasn’t enough to achieve the racial “purity” he wanted. “Action 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. Unofficially performed after 1941, the killing became less systematic. The codename T4 was an abbreviation of “Tiergartenstra?e 4”, the address of the Berlin headquarters of the “General Foundation for Welfare and Institutional Care” (Gemeinnn?tzige Stiftung f?r Heil und Anstaltspflege).”
( http://en.wikipedia.org/wiki/T-4_Euthanasia_Program )
|Nazi propaganda for their compulsory euthanasia program. 'This person suffering from hereditary defects costs the community 60,000 reichsmark during his lifetime. Fellow German, that is your money too.'|
Once again, Nazi propaganda and innocent sounding names were used to convince everyone that they were doing nothing wrong and to give the air of legitimacy to their actions. The institutions where the killings of those nine categories of mental persons took place were called the "Realm Work Committee of Institutions for Cure and Care” (Reichsasrbeitsgemeinschaft Heil- und Pflegeanstaltern).
( http://www.ess.uwe.ac.uk/genocide/alexrep3.htm )
“Letters to relatives of patients who had been killed, who worried about the whereabouts of their mother, brother, sister or child as the case might be, were all evasive, usually limiting themselves to the statement that the relative in question had been ‘sent to another institution, the location of which was unknown.’” Some inquiries were referred to the “Commonly Useful Transport Company for the Sick” (Gemeinn?tzige Krankentransport G.m.b.H). Only one letter was found by Major Alexander that even had the address of this Institution listed and later it was discovered that the very people running this transport company for the mentally ‘ill’ was a branch of the S.S.!
( http://www.ess.uwe.ac.uk/genocide/alexrep4.htm )
The T4 program set important precedents for the Third Reich. Historian Ian Kershaw has called the T4 program “a vital step in the descent into modern barbarism.
( http://en.wikipedia.org/wiki/T-4_Euthanasia_Program )
Indeed, it appears that the infamous “expertise” gained during Action T4 was used for “Action 14ƒ13,” better known today as The Holocaust.