This is a topic I had hoped to avoid writing about, but it seems that the old saw about forgetting history—that we are doomed to repeat it—is apropos once again. As I write today, the Supreme Court appears likely to severely curtail, if not eliminate, the right of a woman to control her own body. This issue has been important to me for most of my adult life. The first time I ever marched in a demonstration was in Madison, Wisconsin in the Fall of 1969 soon after arriving at the University for my freshman year. A female friend asked me to accompany her to protest the Wisconsin law which prohibited abortion. We marched with coat hangers to symbolize the extremes to which some women had gone to avoid childbirth. While I had not thought much about the issue before I got to college, this event sparked an interest which has continued throughout my life. And while I did not know it at the time, something that turned up a little bit later in my life brought it front and center to my attention.
As I made my way through graduate school at UC-Berkeley, I started to get notices from my contacts at the Hillel Foundation about the availability of testing for Tay-Sachs disease. And because of this notice, I looked into the nature of this disease. I discovered that it is an ailment so horrible as to truly be described as evil. It afflicts children from birth, and those children rarely survive their fourth birthday. Their every day is filled with misery and pain, and usually by the age of two they require 24 hour a day care. Few health plans cover all the needs that parents face. One parent will likely have to give up any idea of work and both parents (if indeed after some of this there are still two parents living with the child) will face lives filled with the screams of their child complicated by financial ruin.
The reason the program was being run out of Hillel was that this is a disease which is heavily concentrated in exactly two populations: the Cajuns of Louisiana and Canada, and Jews of Ashkenazi descent. It does also occur outside these populations, but extremely rarely. Hillel was a logical place to target testing for Jews of marriageable age.
I took the test and it came back positive for the gene that causes Tay-Sachs disease.
What that means is that if my spouse also carries the gene, we have a one-chance-in-four of having a child with the disease. Although Terri’s Irish/Danish/Dutch background suggested little chance of the gene, she underwent the test as a matter of caution, and both our children (since they might have inherited the gene from me) have been tested.
This also clarified a matter from my family history. My paternal grandmother Yetta, of blessed memory, brought 6 children into this world. Three of them survived into adulthood and immigrated to America. Three of them died in childhood. None of those survived to their second birthday. My father, being the last child, had no memory of his siblings, but the oldest sibling told me that she recalled unrelenting pain and horror they experienced. While there is no way to be certain that all three had Tay-Sachs, that does seem to be the likely conclusion here.
What does this have to do with the current abortion controversy? I hope most of my readers will understand that knowingly bringing a child into the world with a sentence of agony and certain death by age 4 would be an act of unbelievable cruelty. It is possible to test for Tay-Sachs in utero. But the earliest that can be done is via chorionic villi sampling in the 11th week of pregnancy. This is a somewhat risky procedure because it involves removing a part of the placenta. A much safer test can be done sampling amniotic fluid, but that cannot be done before the 16th week of pregnancy.
In the case of the new laws in Texas, for example, this means that the State is essentially demanding that parents of Tay-Sachs children forego abortion and bring those children into the world, to face unrelenting agony for essentially every day of their short lives.
We need to find a way to make people understand that intruding the State into personal decisions like this is a violation of human rights.