Sunday, May 10, 2009

"Stand Behind"

Apparently there was an article in the national religious press (note to non-Israeli readers: this is a section of the Israeli society) lately about women from that community who have made abortions of a fetus with disabilities. These women believe in G-d, they believe that man is created in His image, and that life is sacred. But if such a community can have an abortion rate comparable to that in America, than I have a LOT of problems understanding that.
Women who have never had a baby with a disability are likely to look upon the mythical "might have" child with Down syndrome much as one looks at a monster. And I place a lot of the blame for that at the feet of the medical community. The attitudes of doctors that Down syndrome is something that must be eradicated, that these monsters must be found and destroyed, has been trumpeted into our ears for over 20 years . I THINK THAT MANY ARE ABORTING BECAUSE OFTHE IMAGE THE MEDICAL COMMUNITY HAS GIVEN US -- That children with DS are some type of monster that must be done away with.
I also used to pray to G-d: -If You have to give me a child with a disability, let it be physical. I could never handle having a child with "retardation".
Surprise, surprise, I had a child with DS, and my life continued, my kids are getting married, etc.

Every woman I have spoken to who knew prenatally that her baby had Down syndrome, said that the person they feared giving birth to was SO much worse than the actual child.
* * * * *
Imagine that you gave birth to a "perfect baby" and then went home. Three months later, you discover that he has diabetes. Or cancer. Or, when a teen they develop a mild bipolar disease. Would it even CROSS YOUR MIND to give the child you love, YOUR CHILD up for adoption? Would you KILL him?
[I mean, after all, he will eat up your time now. His siblings may be ignored. It will hurt the shidduch (marriage-match) chances of the siblings. Treatment will cost money.]

But of course no one asks the Rav (Rabbi)if they should give up their diabetic child for adoption, nor would they kill him. He is their child, and they love him.
But if a child with Down syndrome you would YES abort -you are saying that one can kill this neshamah (soul) not because of any of the reasons above (money, siblings, etc.), but because you find it unconvenient to deal with these problems, and since this child has slanted eyes/an extra chromosome, you have been forwarned and can take "action", before you love him. So in effect, you are killing him because it is inconvenient.
* * * * * *
When I hear that a Rabbi will “stand behind” couples who discover that there child has a problem, I never DREAMPT he meant abortion! To me to stand behind these parents would be to make their lives easier, and their children accepted in the community.
Rahter than encouraging abortion let this Rav give support to BOTH the PARENTS AND the CHILD.
-promote inclusive education
-promote jobs for the disabled
- no toleration of the “R” word as an insult
-finance respite and sib groups for siblings
-encourage rather than block group homes in your community
-encourage high school students and adults to spend time with teens and adults with disabilities
-aid parents in pressuring the educational system, health funds, and government to give these families the support needed

I imagine a community where each high school student volunteers to work one afternoon every other week with a special needs baby or his siblings. A community where teens with special needs are taken window shopping , to a movie, for a hair-do session by their able-bodied peers. The grocery man has the patience (as do the other shoppers) to wait a minute while the 10 year old with Down syndrome tells the grocer the items to ring up. And maybe the 40 year old business man can spend one hour a week teaching and playing chess with the 30 year old man with Down syndrome who lives next door. And the accountant that lives across the street helps him once a month with his budget.
To me, THAT is called “standing behind” the parents!!!


Belinda said...

Dear Ricki's Mom,
Today is Mother's Day in North America and I wanted to wish you a Happy Mother's Day. Some of the most inspirational and awe inspiring mothers I have known were those who had children with disabilities. I could tell many stories...Today I honour them for showing me what the highest standard for motherhood is. I don't idealize them, for I know that they wouldn't want me to. They were human beings who weren't perfect, but they taught their children to read when teachers said they couldn't; they kept them at home when doctors advised institutionalization, and they fought for the best for their sons and daughters. Just like you!

Maddy said...

Controversial indeed. I do like your idea of volunteering. Close up and personal might help change a few viewpoints.
Best wishes and Happy Mother's Day

Batya said...

This is such an important post. Thanks for writing it.

nmf #7 said...

Phenomenal post- it's so wonderful to hear a parent's stance and expressed so eloquently. Thank you!