Looking back, it strikes me how much we are shaped by the circumstances we are born into. Time, place, belief systems all profoundly determine the course of our lives. Sure, we can make choices later as adults that can influence our trajectory, but so much is already imprinted by that time and in the case of my family, the die was cast.
The understanding of inheritance in the 1950's and 60's was still in its infancy. Darwin's idea of natural selection in the late 1800's led to the notion of heredity-- that there must be particles of information that allow organisms to evolve new characteristics and pass them on to subsequent generations. Enter the field of Genetics. That discovery led to the notion that genes for desirable traits might be selected while undesirable genes might be eliminated from the gene pool. Enter the field of Eugenics.
Scientists started asking the question, "what if we could manipulate the gene pool through 'selective breeding' to create a society of the strongest, smartest, fittest?" The ultimate perversion of this notion came of course, during World War II with Hitler's "genetic cleansing". But we were the forerunners of this trend here in the U.S. and in the 1950's when my siblings and I were born the focus, instead of being on maximizing individual potential and quality of life for those with disabilities as is more prevalent today, was entirely on removing those with abnormalities from the gene pool and segregating them in "colonies". All of my siblings, save Danny, were sent to such institutions, The Central and Southern Wisconsin Colonies for the Mentally Retarded.
These confinement centers for the "genetically unfit" were cropping up throughout America in the early 20th century, not just for the mentally retarded, but also for "epileptics, deaf mutes, criminals and those with schizophrenia, manic depression or insanity" (The Gene by Siddhartha Mukergee). And in 1924, the Virginia Senate authorized eugenic sterilization, leading the way to other state-sponsored sterilization programs throughout the nation. My sister Susie was summarily sterilized under just such a program.
Timing is everything. Amniocentesis was first used in 1956 to predict gender in fetuses along with a few genetic syndromes with chromosomal abnormalities like Down Syndrome. DNA was identified in the 50's as the "master molecule" of genetics. But in those days, there was no 23 and Me or any accessible means to sequence genes for that matter, so the cause of the genetic abnormalities in my family remained a mystery.
But what about birth control I wondered? My parents, both from Catholic upbringings in the Midwest and married at nineteen, knew only what the church was teaching; that the primary purpose of intercourse was for the sacred act of procreation and any interference with this was a mortal sin and grounds for excommunication. And my mother became pregnant so easily, less than and year and a half between each of the six of us.
Even when the birth control pill became available in 1960, the church held firm on their stance except in cases of rape. But in the instance of my parents having one disabled child after another, wouldn't it have made sense either for the Church to make an exception or for my parents to follow their own conscience in preventing future pregnancies? In this day and age, there would be no question. But they were born into a wholly different time, place and belief system.
It's small wonder that our mother suffered with mental illness given the circumstances of her life. And here is where science again fell short of the needs of our family. The mental health field at that time was exploring a wide range of substances and their chemical reactions in the brain to affect mood and behavior. Psychopharmacology, or the use of drugs to address psychological illnesses, was just in the experimental stage in the decade we were born into, and brought with it the use of opiates and barbiturates to manage acute behavioral issues like my mom's clinical depression.
In the 1950's, many psychotropic drugs were released onto the market without the full understanding of the neurological mechanisms at play, possible addiction or toxicity. But doctors prescribed them anyway and my mother became chemically dependent and her behavior switched from sadness and depression to anger and aggression. It wasn't until the 1970's and 80's that major research was done to fully understand the way these drugs work on the communication system in the body through their neurotransmitters and how to tailor drug therapy to individual body chemistry.
Unfortunately there was also a shortfall in the child mental health services available until the 1980's. My sister Mary and I, the two remaining normal children, were never helped with an understanding of what was transpiring with the loss of one sibling after another. And we certainly didn't understand our mom's behavior. Nor did we comprehend our own fate or future prospects. We were never told that none of it was our fault. We were left with an abusive mother, a helpless father and no tools to deal with the extraordinary circumstances of our childhood.
With the probability of any of us being born at an estimated one in 400 trillion, each of us is basically a miracle. The chances of our parents meeting in the first place, and their parents and their parent's parents, all the way back. And the possibility of the right sperm meeting the right eggs..... well it's truly remarkable that we exist at all. And then my parents, with no prior history of disabilities on either side of the family, having 4 out of 6 disabled children. And my sister and I spared the fate of the others. How could I not be grateful every moment of my life for the miracle bestowed on me? It's a sacred gift I will never take for granted.
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