This week I have tried to be focused on the excitement of Rachel starting her senior year. I have been re-posting first day of school blogs from her freshman and sophomore years. Today, I had planned to post last year’s and I may later today. But, I must speak to some issues that are troubling my heart today and they should be troubling yours.
Too frequently our Down syndrome community is shaken by reports with titles like this one – Iceland is on pace to virtually eliminate Down syndrome through abortion Yes, this ran on CBS earlier this week and in a way that celebrates the fact that this country may eliminate defective individuals with Down syndrome. This is not new to our community, but it still stings.
Then, there’s Charlottesville. Some of you may not understand how the two are related, but they are. Nazi’s, White Supremacists and the KKK are all groups who want to systemically eliminate populations and believe that they are a superior race. There are people who believe that eliminating people with Down syndrome would make the world a better place. Journalists regularly state that individuals with Down syndrome are “afflicted.” When I mention that my daughter has Down syndrome, Medical professionals still get this sad look on their face and say “I’m sorry.” I am not suggesting that all journalists and medical professionals want to eliminate people with Down syndrome. I am saying that individuals with Down syndrome are still seen as less valuable, defective and afflicted.
About 12 years ago one of the latest-greatest prenatal tests for Down syndrome was about to hit the market. I was living in Memphis and was the Down Syndrome Association of the Mid-South’s Board President. We didn’t have paid staff or an office. I was in the grocery store and a reporter called. She wanted to talk about the new test and the Down syndrome community’s thoughts. As our conversation went along she said,
“Isn’t the real reason families of people with Down syndrome are opposed to these tests is that if there are fewer people with Down syndrome there will be less resources and less money for services?”
I took a deep breath and said, “Well, money is certainly a concern. Our families have to fight for education and services and supports. However, I the main reason families are concerned is that there are some people who believe the world is a better place because of people with Down syndrome.”
She responded with, “Aren’t you being a little dramatic? This isn’t genocide.”
I didn’t need to take a breath this time. I simply said. “Do you remember Hitler and the Holocaust?”
Her response was, “Good point.”
Then I said, “You know I told you at the beginning of this call that I wasn’t going to talk about my personal experience, but I’ve changed my mind. My five-year old daughter Rachel has Down syndrome. I had a prenatal diagnosis. I don’t know a single person who knows Rachel who thinks the world would be a better place without her.”
Holocaust survivor and prize-winning author Elie Wiesel says, “We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. The opposite of love is not hate, it’s indifference.There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.”
Find your voice people.