OH! My Goodness!!!!!!!!! #JusticeForEthan

From the archive: Originally posted 4/11/13


OK… So it really IS true, the more things change, the more they stay the same.

As I noted in my last post, I’ve been trying to learn Twitter speak.  I’m new to that particular social networking technology.  So as a newbie, I did a search on Down syndrome – just to see what comes up.   GOOD GRIEF!!!

If there was any question after Ethan’s death I found more than enough proof that attitudes haven’t changed.

The basic comments, like “She look like she got down syndrome on the left side of her body just the left” or “i sound like i have down syndrome when i talk ” or “I don’t think you could have Down syndrome any worse ” etc……. are enough to make a person scream!

Then we move on to the actual articles that are linked…

There’s the one that talks about the new law in North Dakota. If you haven’t heard, it outlaws abortions based on sex or genetic abnormality. The writer talks about her own daughter and how wonderful she is. She then goes on to say that the law won’t “Help Children With Down Syndrome.” The article in itself is not particularly offensive – but the comments it brought forth from the readers were.  According to several people, those of us who have children with Ds are just selfish, irresponsible citizens transferring the burden of caring for our overly needy children – either by draining social programs or leaving our other children to care for them when we are gone. [Down Syndrome Uprisinghas already elicited an apology from the moderator for not paying closer attention to the hate speech generated by that post.]

Then there’s the article I found entitled “13 Things Never to Say to the Mom of a Child With Down Syndrome.”   You’d think there’d be something new – something I hadn’t heard when Josh was born in 1987.  Not so much!

Finally, there was an article that I thought would show me the light…..    A father of a child who happens to have Ds wrote about the “Generational Shift in Understanding Life with Down Syndrome.”  He talks about how  some people, including doctors, no longer place limits on people who have Ds.   How the generally accepted attitude is that their life is “worth living.”   While I agree, to a point, it’s obvious that the uninformed/inexperienced majority would beg do differ.

civil rights
So besides being just down right annoying, how does this affect us today?
I used to think of that famous Norman Rockwell painting “The Problem We All Live With” every time I had a problem with ‘inclusion’ for Joshua.  It depicts Ruby Bridges walking to school among the tension of desegregation.  Our children, Ethan and Josh, were among those ‘guinea pigs’ when mainstreaming became inclusion.  It wasn’t easy, and at times it was really scary.

I had hoped, that what they went through was worth it because we were changing attitudes.  We were helping the general public realize that our kids were ‘worthy’ of being included.

What saddens me the most is thinking the attitudes of those officers three months ago, along with the comments and tweets that I see today, prove that I was wrong.   Did I put Josh, and myself, through all of that for nothing?!?!?!

I hate to sound so pessimistic, especially to those new parents of beautiful babies who are just starting out on the road to advocacy and inclusion.   I will continue to do all I can to make a difference.  But I can’t do it alone.

Please let Ethan’s death stand for radical change!!   The time is NOW!


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