Here’s a letter from James B. Gaffney of Portland, Oregon, in response to the post “Stand Tall.” I’m running it here in its entirety in hopes that it will prompt a wider discussion.
I wish I’d heard your speech, “Stand Tall,” at the National Down Syndrome Congress convention, but I’ve been looking at it online and thought I’d weigh in. My daughter Karen is the swimmer you referenced in your talk, who participated in an English Channel relay in 2001. She also presented a keynote speech at the conference the day before you spoke, and said some of the same things you said regarding throwing out the bad data and replacing it with what we have learned from the first generation of citizens who were not institutionalized wholesale at birth.
As you put it, I have been trying to turn up the volume for a long time â€“ without any measurable success. Instead, I had resigned myself to watching Karen make her own music, which wasn’t a bad place to be. But inside me there is a screaming voice aimed at the topics you brought up in your talk. Sometimes I have let the voice out, but so far it hasn’t connected. Even in friendly circles people seem to immediately turn off any kind of passionate discussion about anything to do with abortion.
I went to the NDSC conference with great expectations that we might finally organize ourselves to speak out, but I came away concerned that we are still very far away from being able to land an effective counter-punch. After a couple weeks to think about it, there are two things that concern me.
One: we in the NDSC are too comfortable with our effort to do missionary work with the American College of Obstetricians and Gynecologists. I am afraid this effort could be very successful without changing anything. And two: I am afraid the NDSC is attracting other groups of abortion foes (such as the Right to Life people) to our cause. I don’t necessarily disagree with them, but I don’t want to swamp our boat. Their cause is much bigger than ours. It is also stalemated for over 30 years. If we are viewed as being used by a bigger cause, we are certain to suffer the same fate.
I think there are two root causes for why we are where we are. First, there are no official numbers. We don’t know exactly how many people are born each year with Down syndrome, nor how many are terminated, because there is no national effort to gather this data. We need to have numbers. We will never change anything without them.
Second, we either need to stop the malpractice cause of action for “wrongful birth” cases with federal legislation, or we need to find and fund a test case for “wrongful termination.” We can befriend the ACOG professionals until we recover the Hubble spacecraft. It won’t accomplish anything. These medical professionals are only listening to their insurance carriers and their lawyers who are telling them, “You can’t get sued if you terminate”. As long as there has been genetic counseling, the code of conduct for these professionals has been simply stated. It says that they should only present objective data and that they should not try to influence the mother’s decision one way or the other. They know what to say, and they know what to do. Helping them with the first part doesn’t necessarily change the second part.
We went down the other road years ago. We went to the genetic counselors we knew, and we tried to make contact with others. We offered to meet with expectant parents on short notice so that they could hear our story and meet Karen. No one took us up on our offer.
Then 10 years ago we set up a foundation to make a video that counselors could give to families so they could learn from experts and people with the condition in the privacy of their own families, away from the view of strangers. We may have saved a few lives, and for that we should feel better than we do. But I know we can have more impact.
The existence of the “wrongful birth” cause of action spits on everything we know and stand for. There cannot be contempt for these people in the womb that just disappears for the ones who make it to birth. It won’t be easy. It will probably take a long time. But, at least we will be fighting a root cause instead of a symptom.
Thanks for standing tall. I am sorry I wasn’t there to cheer you on.
James B. Gaffney
Mr. Gaffney is a member of the board of directors of the Karen Gaffney Foundation.