Some People Believe the World is a Better Place Because of Rachel

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.

 

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3 comments

  1. Well said. I am appalled to know that in the last 10-15 years the number of hate groups in this country has nearly doubled to 950 ((ABC). What a terrible waste of human potential.

    My heart tells me that part of the solution lies in family life education – teaching young people about how to raise positive and mentally healthy children.

    Complex in a world of electronic media where children have access to games and activities that teach violence and hate.

    And where social media opens the door for anti-social messages.

    And the decline in our culture’s core of religion and values. When I was a child public schools allowed children one hour each week to attend religious education classes. Today that would be considered unconstitutional. Ok – I’ll stop!

  2. I am a former special education teacher. I began teaching Down Sydrome children in 1971. At that time, pediatricians were recommending an institution for the children and to not get emotionally attached. Fortunately, I was teaching at a private school and we were the pioneer of teaching Down Syndrome children to read and write. The large grocery chain in St. Louis, Schnucks, was always receptive in working with us and giving the kids a chance to be a part of the community. We have come a long way, but still have miles to go.

  3. Bravo!!! I couldn’t agree more with your statements. We have heard from countless people how much Sophie brings to this world. I have learned so much from our daughter with DS than I thought possible. She is a light in the darkness and amazes us daily. When I received her diagnosis I was devastated, but it was because the information I had was grim. I never knew the possibilities and grieved for the worst. I could not have been more wrong. I think in any type of prejudice the answer is getting to know the person. Not looking at groups or stereotypes. My watching my daughter in these past 6 years I wouldn’t change a hair on her head!

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