Erik Quinn: The Heart of a Family: Being Human

Thursday, February 08, 2007

Being Human

Oh, I’ve seen children with Williams syndrome. They don’t count. They’re not even human. They must belong to some other species entirely.

-- Unidentified language researcher at a conference on language and evolution

Ironically, I think it's human nature to dehumanize and demote people in our own minds when we feel threatened by them or lack understandstanding of them. It's extremely comforting to separate ourselves from people who are different because we don't have to face seeing ourselves in them. Different can be scary. I am guilty of letting fear keep me from seeing the people around me as clearly as I should have in the past.

People have been persecuted and dehumanized for centuries for their gender, their religion, their sexual orientation, the color of their skin, their disabilities, or even having a devastating disease. Sadly, the world does not seem to have drastically changed from the days of witch hunts and the Holocaust. We are still living in the Dark Ages in many ways in a world of hate crimes, "ethnic cleansing," and genocide. Children are taught that it's okay to bully other children by their own parents. And that seed is so easily planted when nothing is said and that behavior is silently tolerated.

The more I read about Williams syndrome and autism, the more I realize how young these diagnoses are and how little is really known about the brain. I was horrified to discover that many brilliant people making great strides in scientific research seem to lack a basic sense of compassion for their subjects of study because they consider them just that -- subjects. One researcher placed autistic children in the same group as "robots and chimpanzees," stripping away the human component entirely. Maybe they are afraid to reveal how much of these disorders is a mystery to themselves and reveal themselves as human. Maybe a sense of detachment is one of the ingredients of being a great researcher. I know that the geneticist that confirmed my fears that rainy March day last year lacked anything remotely resembling compassion. I had no doubt the man was brilliant, but he obviously had his nose in a book the majority of his life. These days I find comfort in reading about researchers like Ursula Bellugi, who seem to be able to maintain a human connection with their subjects of study and treat them with dignity and respect.

Maybe it's just hard for me to admit my precious child is one plane ticket away from being the subject of a study at all.

To me, having no compassion is not human.


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Anonymous Erik's gramma said...

I've learned a lot about myself and my attiudes since that March day that changed my universe. And I've learned a lot about my daughter. I don't always like what I learn about other people, away from our family, but I appreciate us and our philosophy more than ever. I've thought more about family philosophy during this year, and I'm happy with the conclusions I've made, though I don't understand life and humanity in general any better, that's for sure. Seems like in my old age something should get clearer. Maybe facing the fact that things will never be clear is a step?
Love, Mom

9:38 AM  
Blogger ~Deb said...

People are so afraid of the unknown. And yes – we still do live in the ‘dark ages’, because people are so closed-minded about the fact that there are people out there with differences… Lack of understanding, lack of educating and the lack of relating has us at odds in every way. It’s sad, because we’re all in this together whether we know it or not. Whether it be a disability, race, religion, orientation, whatever – it still remains that we’re almost exactly how we used to be…without admitting to it sometimes.

12:23 PM  
Blogger Leesa said...

In the next twenty years, I predict that we will see things (in science) in a whole new light.

I have known physicians who are methodical and not at all compassionate, but sometimes their expertise is exactly what you need. It saddens me to know that some intellegent people do not consider those with ANY syndrome as not being part of the human race.

5:31 AM  
Blogger Aspen said...

I will never forget when a doctor was talking to us about Daven. Long before our diagnosis she said that Daven was "something" she had never seen before. "I guarantee when you go to the doctor tomorrow, you will have 5 or 6 doctors in there looking at him. Because you've got an interesting case here." She called my son a "case" and "something!" I was mortified and left the room bawling!

Sometimes, they just don't understand what they are saying.

3:05 PM  
Blogger Rosemarie said...

Receiving care from the medical field is so much more than textbook knowledge.

Be encouraged to seek out those you connect with most.

"Compassion is the basis of all morality."
Arthur Schopenhauer (1788 - 1860)

5:59 PM  
Blogger Rosemarie said...

Erik's Gramma -

May the courage of your family change lives and attitudes.

6:04 PM  

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