The Difficulty of Knowing

There is an old adage: Ignorance is Bliss. In the case of liberal eugenics, human genome research and ethics, some people might think this as they read on. As we come closer to discovering what makes us physically human, we come closer to becoming god-like. In the name of progress we fly higher and seek control. Apollo had a son called Phaethon, who was human. Phaethon nagged at Apollo to let him borrow the sun chariot and fly across the sky. Finally Apollo agreed. Phaethon proudly drove the sun chariot up into the sky, but then he lost control of the horses. The sun chariot dived towards the earth, burning everything. Finally Jupiter had to stop him with a thunder bolt.

In the name of progress, human genetics, biotechnology and the economic engine that will profit dearly from it all, this movement will go on. To what end is yet to be determined. In the meantime, let’s keep talking about what this all means as my son hugs me from behind with his cherub smile this morning.

I’ve been pondering my first pregnancy with Adam. The expectation of him. Needless to say, after thirty-six years of waiting, I was ecstatic. I was in Barcelona when I found out, unknowing of the apparent irony of Gaudi’s warped buildings, Dali’s surrealism – beauty born from "juxtaposing unrelated systems and altered established visual order."

When I came home to Canada was when my apparent joy was met with foreboding – my first ultrasound and nuchal screen and then shuffled in to a genetic counselor’s office to talk about the 1 in 244 chance of giving birth to a child with some kind of genetic defect. I think they told me what kinds of defects, but the discrepancy between them obviously meant nothing to me because I can't remember. That was a like throwing a bucket of water on my flame. Not having children before, I had no idea I would be subjugated to a tiny office with a stranger giving me statistical factoids – whose supposed disengagement angered me. In fact, I remember feeling pressed, asking questions of what it all meant…I just remember that severe countenance giving me probabilities devoid of empathy.

I called my obstetrician and asked him what it all meant. Did he or did he not feel that from my test results I was going to give birth to a defective child? He tried to root himself in statistics, reserving himself to the facts instead of any judgment. I searched for a tone of voice that might allude to an opinion. I found myself in an unexpected ethical debate with myself – strewn into a situation of making prenatal decisions about my child that I was wholly unprepared for, and in fact, given a choice that I never asked to have.

I felt jilted out of my joy. The news of risk not sobering, just agitating. It was overwhelming information. I did not know what to do with it. If I wasn’t so excited with having my first child, would I have listened to that counselor and aborted? I did not have the amniocentesis. Sheer excitement and determination was the force behind the birth of Adam.

Doctors, geneticists and genetic counselors are trying to remain in the neutral ethics zone. Remembering the false neutrality of that counselor, how I was shuffled into a genetics counseling office without given the choice, the warning of what that was going to be all about, I consider that the scales are tipped against this whole movement towards the rights of the disabled, and for that matter, the fetus. It is said that The Human Genome Project will identify over 100,000 genes and diseases without cures over the next ten years. I think it is obvious to state that ethically, we are not ready for this. What do we do with all that information, all that choice? There is difficulty in knowing.

I take these thoughts to daily life with friends. I know a dermatologist, working with people's desire to transcend time, people's vanity. I remember once how she considered to pin back her son’s ears for fear that he might be ridiculed in school. Of course, readers who know me will understand how absurd I feel this procedure is in the context of human difference. Let him have his ears, I say! Let him exult in his uniqueness! Yet, I know she is trying to protect him, as all parents are inclined to do. What cost is her seemingly innocent motive to “protect” her son, to the rest of us who fight furtive discrimination every day? Discrimination is so deeply rooted within us, perhaps within human nature itself, that we must tear down concrete walls with bare hands.

There are many people who put their children on Ritalin because kids simply cannot not perform in school or complete their homework. The Ritalin “is amazing,” they all say. “Joe’s [made-up name] teachers have said he is doing so well.” The teachers are satisfied that little Joe doesn’t act out in class anymore, now uniform and compliant, I suspect. "Joe" can now focus on what he has to do, I'm not saying that in itself is a bad thing. Parents are often left with no other recourse. What I am saying is that it's a shame that the "system" won't accept him for who he is. A friend asked me once “what if there was a pill Adam could take…” Ah, that thought was for a moment, tempting. I could escape all my worries if Adam’s autism could be cured by a little pill, right? This is an excellent question. What if? Would I stop this rampage about discrimination and eugenics if Adam were, all of a sudden, normal? After all, what would I have left to fight for?

Little pills, escape from any kind of struggle or pain, is all too tempting, I might speculate, for all of us. What kind of absurd world might we have if we were all operating on even-keels, on pills? (I always tend to use Ritalin as an important part of this debate). I think of a Stepford Wives world here. Within the “normal,” rigid classroom, a child who acts, or thinks, outside of the box is rejected. I must admit that to undertake the alternative, to stand up against the school system is a difficult and time-consuming undertaking. My friends do not willingly choose the path of such resistance, nor are they in a position where they need to. They are extremely intelligent and hopefully will recongize the importance of this posited argument.

I have a big reason to be concerned. My father was a victim of the Lebensborn movement in Germany, and if not specifically bred for Nazi parents, he was stolen from a Polish or Scandinavian family and put into a German one in Breslau “for his Arian features.” As a result, he had a difficult relationship with his parents and after coming to Canada in 1952, left his parents at fifteen, the pain of being any part of Nazi Eugenicism a complete repulsion to him at that young age. He tried to convert to Judaism. His daughter brought that realization full circle as he now has a Jewish grandson.

I am considering today how the Eugenics Movement has too much steam in its disguised innocuous research, and ideals that can be traced back to the universal worker of Karl Marx, who sought uniform and idealistic physical traits of workers, for the sake of the nation.

Just how much do we conduct science for the sake of mankind? Or is it the quest to be like the gods? What drives us in these quests? The greater good, or control? If we want a greater good, we always have to take the other, more unpleasant side or progress. We also have to understand that all words may sound the same, but have entirely different meanings.

I am certainly not saying that most people are evil or have evil intent by actively participating in cleaning up the human race. I am not accusing parents who give their children Ritalin or consider pinning back their ears for aesthetic reasons.I am suggesting, however, that the pressure to belong, to fit in this "normal box" is immense. I am also suggesting that wrapping up language and intention in palatable words, ones that seem to be harmless, or disguised for the greater good of humanity, may in fact be just the opposite. Hitler’s propaganda promised a better Germany – more jobs, economic stability. You can wrap up intention in all kinds or good words, but it doesn’t mean the same thing.

In looking deeper into my social responsibilities, in putting some intention and action behind my beliefs, I have to reconsider the rights of animals, the rights of minorities, the poor. I can’t sit back and scratch myself debating this intellectually as I sit comfortably in my chair. I am considering how I can best participate. I am incorporating a Canadian organization which will deal with acceptance. Yet, I consider that as the years progress, this will evolve into an organization to undertake political action. It is unknown territory for me (any words of advice are welcome at this stage). Let me begin with incorporating and organizing the exhibitions and lectures this fall. (help me with the name please – I like Action for Autism and Project Ability – both out of the UK). I’m not exactly sure where I’m headed. There is difficulty and responsibility in knowing.