Wednesday, April 05, 2006

Person First, Disability Later

Robin A. Meltzer, writing at, a Jewish site, gives us Person First, Disability Later, a heartfelt article which begins:

It is Yom Kippur, one-thirty in the morning. A young Jewish couple is in a hospital delivery room, minutes away from becoming first-time parents. Anticipation mixes with the holiness of the night. This child will be another link in the unbroken tradition leading all the way back to Sinai. And then she is born. The parents are elated. But the nurses fall silent; the doctors look uncomfortably at the floor. Because the baby has Down Syndrome. And that young Jewish couple is informed that their daughter, their precious first-born child, is some sort of mistake.

I was the mother on that delivery table. And on that Yom Kippur, in the middle of the night, I learned that being Julia's mother meant being her advocate. My job started immediately. My basic philosophy has remained constant over the past nine years: Julia is a unique individual, not a diagnosis. She must be given every opportunity to develop her capabilities. She is a full member of the Jewish community, entitled to the birthright of Torah and a Jewish education.

After the reception she got at the hospital, I hoped that the Jewish community would be more welcoming. And generally it was. But there is a lot of fear and misinformation.

This, from later in the article, tore my heart out:

To our great dismay, we also discovered that some confused and frightened parents are advised by their rabbis to abandon their babies with Down Syndrome in the hospital. While it is true that not all parents are capable of raising a child with special needs and that placing a child for adoption is sometimes the only choice, many more parents would take their baby home if their rabbi did not inveigh against it. Too often, these misguided assessments are viewed as a merciful response to the family's fear and misinformation about people with Down Syndrome, and not based on true Torah principles. New parents need support to work through the initial shock of diagnosis. They need time to get to know their baby, to hold her and rock her and sing some lullabies. If given the chance, most parents will realize that they love their baby very much and are quite able to raise her.

Read the whole post. It's got some Jewish terminology, etc., that I don't understand, but the plea to accept people with disabilities as individual people first and foremost comes through loud and clear. Be sure and look at the comments. The author seems to have hit a nerve.

Previous related post: Children with extra challenges, and the parents who love them

1 comment:

reader_iam said...

This is a wonderful link, Kathryn. Thanks for bringing it to us!