I’ve been thinking a lot about the case of Amelia Rivera and how it relates to MaterniT21, the blood test to detect Down syndrome which was released last year. In an age when inclusion has become commonplace, opportunities for people with disabilities are greater than ever before, and modern medicine is improving at an astronomical rate, why does it sometimes feel like the medical community is my son’s worst enemy?
From the doctors who ask their patients when, not if, they’ll terminate their child diagnosed in utero with Down syndrome, to the case of Amelia Rivera, who was allegedly denied a life-saving treatment due to her intellectual disability, to the recent New York Times article about “numbing and dumbing” individuals, to the case of Annie Farlow, an infant with Trisomy 13, who had a Do Not Resuscitate order placed her in file without her parents’ consent when she contracted a treatable respiratory condition, it seems that many doctors believe that an imperfect life isn’t worth living.
I’m not speaking of all doctors, of course. My OB/GYN didn’t pressure us to undergo prenatal testing, and he reacted in a positive way when Nathan was born. Nathan’s pediatrician has been nothing but wonderful from Day One. By the time we showed up for his one-week checkup she had already called early intervention for us and contacted other parents of children with Down syndrome for support.
But the fact remains that many doctors don’t value my son’s life, and companies like Sequenom are dumping big bucks into research that feeds off that fact.
Sequenom doesn’t have an altruistic motive to provide information so that women can be informed – Sequenom cares about money. They wouldn’t have wasted their time developing that prenatal blood test if they weren’t pretty confident doctors would utilize it.
I don’t know why some doctors – men and women who’ve been charged with caring for others – seem to be the ones least accepting of people with various syndromes, conditions, and disabilities. Even if those physicians who would target disability are a very small minority, it’s still chilling to know how much power doctors have over life-or-death decisions – and how blindly we trust them in our medical decision-making.
What I do know is that by the time an individual becomes a practicing physician, he has passed after test after test after test to prove his worth. He had to achieve a high level of academic success in order to be admitted to an undergraduate program. Excelling at even higher level was required in order to gain admittance into medical school, and the bar was raised yet again to be successful in medical school within a pool of people who were, without a doubt, the cream of the academic crop.
To become a doctor, perfection is demanded.
Maybe perfection doesn’t tolerate imperfection.
Dr. Brian Skotko recently completed a three-part study of individuals with Down syndrome and their families that showed that the experience of Down syndrome is a positive one. Parents and siblings reported feelings of pride and that their lives had been enriched by their family member with Down syndrome. “The voices we heard were very satisfied and very positive about their lives despite the fact that they have real challenges,” said Skotko. Note also that nearly 100 percent of the individuals with Down syndrome reported they were happy with their lives, liked who they were and how they looked.
By contrast, it’s long been reported that physicians have higher rates of divorce, substance abuse, depression, and suicide than the general population. Would nearly 100 percent say that they are happy with their lives?
Perfection, of course, is an illusion.
And it makes me wonder: Which life is really the one most worth living?
Further Reading:
Self-perceptions from people with Down syndrome, Skotko
Having a Brother or Sister with Down Syndrome: Perspectives from Siblings, Skotko
Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers, Skotko
Annie’s Story: The Tragic Death of a Girl with Trisomy 13 – PART 1
Annie’s Story: The Tragic Death of a Girl with Trisomy 13 – PART 2
Love this, love that you feel the same way I do about this topic. When my Ob/Gyn found out that my son Colton had Down syndrome he reacted in such an offputting way. I quickly found a new Ob and never looked back. Colton’s Dr is wonderful though, very accepting and very very helpful. He checked Colton every month for the first year just to keep an eye on him. Now we go every 2-3 months since Colton just turned 2. He is always willing to see him and give any refferals I ask for. It is sad that not everyone can see that imperfection is perfect. They seem to be blinded by societies need for acceptance instead of just looking with their hearts.
I am always awed by your posts, and how my experiences and (some) views are so different from yours, I can agree with everything you write. best,
I think that’s because many of the issues I blog about (such as this one), aren’t about politics or tribes or forcing people to look at things MY way. Of course I have an opinion, which anyone could ascertain from what I write, but I want people to think for themselves – my aim is to teach, not to preach.
Introducing you to Amy Julia Becker who blogs on spirituality and her family that includes a daughter with Ds.
http://www.patheos.com/blogs/thinplaces/
Thanks, Barbara. I’ve been acquainted with Amy Julia for quite some time – I first read her back in 2010 through a post she wrote for the NY Times’ Motherlode. I love her writing and really enjoyed her book, A Good and Perfect Gift.
Academic perfection can be pretty limiting, if you ask me. It’s not necessarily indicative of human understanding or EQ or empathy.
I also think the power conferred on doctors limits their self-reflection and insight. It’s unhealthy.