Thursday, June 4, 2015

I. Am. So. Angry.



You all, I have been trying to write this post for an entire week.  I put it off because I couldn't figure out how to write what I wanted to say without coming off as a jerk.  So this is my disclaimer: I don't mean to be nasty, but I'm mad. I'm sharing my anger with you in the hope that we can start a dialogue that might lead to positive change.

If you've followed my blog, you know I think we need to be nicer to each other.  To forgive more and to embrace our differences.  (See this post.) For the most part, people are very kind to our family and our children.  But not always.  One such instance happened on Friday, during my oldest daughter's graduation from high school (which was a Big Deal--she has only been in this country for 6 years and came home without speaking any English.)  

Unlike my senior class which had all of 54 students, my daughter's class had 350 students.  The graduation was held at The Bank of Kentucky Center which holds 10,000 people.  Almost every seat was full.

We made it to our seats just in time. Jonathan was with us, so we sat on the wheelchair deck, which was at the very top of the arena.  The band was playing and students were walking out as we were sitting down.  Everything was good for the first half of the ceremony.  The kids were (mainly) good, and we were all so, so proud of our oldest daughter.

Then Grace happened.  Grace is our 11-year-old daughter who is has autism, developmental delays, and seizures.  She is nonverbal, but she does make some noises.  One of which happens to be a high pitched squeal that sounds like a sea gull.  This is her "Happy Noise".

Apparently Grace was Very Happy that her big sister was graduating because she started squealing.  It went something like this: "Squeal!"  Pause.  Pause.  Pause.  "Squeal!  Squeal!"  Repeat several times.

Aside from crying when she was seriously hurt or having a seizure, and sometimes a small laugh, Grace didn't make a sound the first several years she was with us.  That's right, Years.  So squealing when she's happy is Big Progress for Grace.

So here we are, watching our oldest graduate, while our middle daughter squeals with joy.  (Inside, we were squealing with joy too.)  Grace wasn't the only one making noise, proud parents and friends would hoot and holler for their loved ones.  All in all, it was a loud, happy arena.

 That is until a man who worked for The Bank of Kentucky came up to us and said, "Control
your daughter or I'll have to ask you to leave."

Grace wasn't hitting anyone.  She wasn't throwing things.  She was just happy.  She was loud, but so was everyone else.  She just didn't express it in the same way.

You can look at Grace and see that something is wrong.  Typical 11 year olds don't drool.  They don't wear diapers, and they know that shrieking in public when you're happy isn't "normal".

Grace enjoying the sun!
We've had nasty comments about Grace and her noises.  People have called her a dog.  They have said, "That kid needs to shut up."  And other things I can't remember.  The comments have come at restaurants, the grocery store.  Even church.

And now we were being asked to leave my oldest daughter's graduation.

Something in me snapped.  My daughter is a human being.  She is not a "nuisance"  or a "problem".  I wanted to say to the man, "If I could get her to speak instead of shrieking don't you think I would?  Do you think I want her to be locked in a body where she understands everything being said around her--including all of those nasty comments?"

Instead, I tried to explain to him.  I said, "She's autistic.  She can't help it."

He said, "I don't care.  She needs to settle down or leave."

I try really hard to give people the benefit of the doubt.  I ignore the looks and the comments.  I believe that if most people knew how much their words hurt, they wouldn't say such mean things.

This man was obviously not one of those people.  He. Just. Wouldn't. Stop.

He said, "She needs to leave."

"You can't ask her to leave," I said.

"Oh yes I can," he said.  (Yes, those were his exact words.)

By now, everyone was staring. (I might have raised my voice.  A bit.)  Dear ones, I didn't care.  I pointed at that man and said, "According to the Americans with Disabilities Act*, she is entitled to be here. We aren't leaving."  Then I turned my back to him and tried to focus on my oldest's graduation.  But I was fuming.

After a few seconds, the man left.
Holding Grace at the graduation.

I tried to enjoy the rest of the ceremony but I was furious and deeply hurt.

Dear ones, we accommodate  all types of people (as we should).  At the graduation there was both wheelchair access and a sign language interpreter.  Both great things.  We understand that if someone's legs don't work, that doesn't mean they should be hidden at home, away from the public.  We don't mind if their wheelchair takes up a little more room.  We accommodate them.  If someone can't hear, we provide an interpreter.  If a blind person is using a cane or a guide dog, we step aside.  We, the able-bodied, change our behavior.  We do not expect the disabled to accommodate us.

And what about "normal" people who inconvenience us?  I'm short.  If I'm at the movies and someone tall sits in front of me, I can't see.  Do I ask that person to leave?  No.  If it bothers me,  I move.    

I think we have to ask ourselves whether we are "okay" with certain disabilities, but not others.  Maybe wheelchairs and sign language interpreters fall into the Socially Acceptable category, but behaviors on the Autism spectrum are Unacceptable.  Why?  Because we aren't used to them?  Because they make us uncomfortable?

As a society, we need to stretch.  We need to get to the place where different doesn't mean Bad.  Until we do, we are going to keep speaking in ignorance, hurting those who are unable to speak for themselves.

Ghandi said, "A nation's greatness is measured by how it treats its weakest members."  Measured against that, I'm afraid we're not doing too well.



*Title III of the American's with Disabilities Act states:  No individual may be discriminated against on the basis of disability with regards to the full and equal enjoyment of the goods, services, facilities, or accommodations of any place of "public accommodation" by any person who owns, leases, or operates a place of "public accommodation". 

10 comments:

  1. I have a special needs grandson and I would lose it if tis situation happened to us.

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    1. I'm praying that you never encounter such a situation. My hope is that by sharing our experiences, we can get people talking about these issues, and that way get rid of the ignorance.

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  2. Stephanie, God knew Gracie needed an angel to look out for her. He sent you. It is people like you that make this world a better place. I admire you for all that you do. May God bless you, Stephen and your precious children.

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    1. Thank you, Sheila! It's wonderful knowing that people care about what happens to our children--especially those who can't speak for themselves.

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  3. Steph,
    At the moment I can't respond to this on Facebook--seems my response to a rabid racist crossed some arbitrary guideline that the racist didn't. Oh well. But I wanted you to know how much I appreciate both your blog post and your oh-so-righteous defense of Grace. As you know, my oldest granddaughter also has cognitive issues. She is not always 'socially acceptable'. But by god, she, and Grace, deserve that acceptance. Being human comes in such a grand plethora of guises. There may be an average. But there is no 'acceptable' standard--we're ALL acceptable. After all, anyone can be average. God bless Grace for showing us the limits of average. And bless her for showing us the limitlessness of being human. Perhaps, hopefully, that Bank of Kentucky employee will someday realize being in the company of our fellow men and women is to be in the company of miracles. We'd best learn to appreciate that. As is written, we all ultimately will be judged in the very way we choose to judge. Sobering, isn't it?

    Again, good for you for standing up for your daughter--BRAVO!

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    1. Doug,

      As usual your eloquence astounds me. Are you a writer? ;-) I love that you wrote: "Being human comes in such a grand plethora of guises. There may be an average. But there is no 'acceptable' standard--we're ALL acceptable." I couldn't agree more. Beautifully said.

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  4. Good for you. I feel like I bring up ADA at least once a week with my special needs daughter and husband (both autistic). Sometimes mama bear has to yell! ;)

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  5. Was this rude man there representing the Bank of Kentucky? Was the Bank of Kentucky sponsoring the event at the school? Was he a security guard? His bosses need to know about how rude he was to your family. Stephanie, please answer these questions when you can, may God bless you and your beautiful family! ~M. Weiss - Lexington, KY

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    1. Marianne,

      Yes, unfortunately, he was representing the Bank of Kentucky. I don't know what position he held. The event was held at The Bank of Kentucky Center which is like a stadium or arena. I'm hoping that the man now has a better understanding of the differences we all have and the rights of the disabled.

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