Not So Different After All

A friend sent me this article, Seeing the Child, Not the Disability, this morning.  It’s a short op-ed written by Dr. Dennis Rosen, a pediatric pulmonologist practicing in Boston.  He’s one of the good guys as revealed here:

I started my pediatric residency 18 years ago this summer, two months after my oldest was born. Over the years, I have cared for thousands of children with all sorts of conditions, and I try to connect with each and every one of them in a special way. With some, I talk about what they’re reading, the sports they’re doing, the instruments they’re playing, their dreams or their fears. With others, the communication is nonverbal, whether they are babies who haven’t yet learned to speak, or their development is delayed. I have yet to meet a child who fails to kindle my compassion or to bring out in me the most basic desire to try to help.

What he wrote next, however, may either bother you or cause you to almost produce an emotional yawn:

Perhaps this is why I was so shaken by what I had just heard, about mother and son being shunned by others who were unable to see the son she loves as a child instead of as a condition or disease.

I read this statement, took a sip of my coffee, and initially thought, “Aw, muffin.  It’s okay.  I was shaken the first time I experienced this, too.  You’ll get angry the second time it happens.  The third time? Well, you’ll just be used to it.”

Shunning children, teens, and adults because they are viewed only as a representation of their illness is more than just common.  It’s an expectation.  We know that it will happen because we expect it.  It’s called ‘stigma’.

Eadaoin watched girls in her school call the special needs students “monsters”, and she was mocked for choosing to sit next to them at lunch and in art class.  According to Eadaoin, however, they were sweet, and she enjoyed making friends with them.  It was true that they had communication delays, and one of the boys was a “hugger”.  He would often hug Eadaoin too hard and hurt her, but she understood that he was trying to communicate.  One girl could only grunt and vocalize to communicate.  This didn’t bother Eadaoin.  She saw them as people not defined by a disability.  Just people.  Like her.  Because they are.

I witnessed something very different, however, a few weeks ago at our local “splash pad”.  My friend and I took our girls to the park, and her little girl was desperate to get wet in the fountains of water.  Her daughter has epilepsy.  Grace has COS.  Milly has an autism spectrum disorder.  Taking those three together anywhere is always interesting.  As we watched Grace ride herd on my friend’s daughter and Milly, we both noticed a boy with low-functioning autism.  He was ecstatic to be in the water, jumping, flapping, smiling, and awkwardly running back and forth between what were clearly two favorite sources of water.  He had an aid who was shadowing him, giving him a wide berth to enjoy himself.

My friend and I enjoyed watching this boy.  We own a company that produces material for ASD children and caregivers and professionals who work with children on the autism spectrum so we began discussing what is known about ASD children and water.  They love water.  Consequently, there is a higher risk of drowning for ASD children than for neurotypical children due to this simply because they will often run from a parent or caregiver when they spot a lake, pool, or fountain; and, ASD children are runners.

As we watched our children and this boy, we noticed that a girl had come on the scene.  She didn’t appear to be a kind girl.  She reminded me of Veruca Salt from the Roald Dahl novel Charlie and the Chocolate Factory.  She was loud and abrasive, and she had “bogarted” this boy’s favorite water toy–the firehose.  It was something that looked like a large hose that could be aimed, and this girl decided to aim it directly at this boy’s face and chest.  It didn’t matter where he went on the wet playground.  She sprayed him in the back of the head, upper back, and face.  And she laughed.  When she felt convinced that he was far away from her she would then screech, “Mom, look at me!”

My friend and I turned to look at her mother who was, in keeping with Roald Dahl’s creation of characters, a caricature of a woman with a beehive hairdo, huge bosom, and large teeth.  She was pointing and laughing! My friend and I were incredulous.  I am one to sit back and observe before allowing my anger to influence me.  My friend, however, was viscerally affected by the sight before us.  I think I was in denial.  Could this really be happening?

The boy tried to communicate to the girl that he did not like being blasted in the face with water by putting his hands in front of his face and grunting, but the girl continued to blast him in the face with water.  Over and over again while laughing and jumping up and down.  I looked at her mother again who was…laughing.  My friend muttered, “Twat…” under her breath.  I looked around at everyone.  There were mothers everywhere.  This situation was impossible to miss.  Everyone was looking away.  The boy’s aid looked utterly helpless.  He was looking at this girl’s mother as if to plead for an intervention.  Clearly, the girl’s mother was as pleased to bully a special needs child as the girl herself.

What do you do? We felt compelled to do something.

My friend and I decided to intervene.  I clandestinely told the 16 year-old city employee stationed outside the splash pad about the situation while my friend stood behind me, arms crossed, looking intimidating.  I thought it would be pointless.  What is this poor kid going to do? Instead, he looked enraged.

“Show me who the mother is.  Where is this girl? Thank you for telling me.”

The situation ended quickly thereafter with the mother and the girl leaving tout de suite.

This is a perfect example of an adult and her offspring viewing a child solely as their disability.  He wasn’t really a person with value because he looked different.  He couldn’t speak.  He ran around awkwardly.  He flapped.  He grunted.  People like that don’t have feelings, right?

Wrong.

They do.  More than they can even begin to communicate.  As Dr. Rosen goes on to express:

I couldn’t help recognize the cruel irony of these strangers withdrawing from this child because of the very sounds and movements that he uses to try to interact with them, undeniable expressions of his humanity.

I realize that my friend and I can be firebrands, but that is what we do.  We are advocates.  It’s easier for us to step in sometimes when we see a cruelty like this at play because we’ve done it before.  The more you do it, the easier it becomes.  I don’t care at all if someone gets mad at me particularly if that person is bullying a vulnerable person.  Go ahead.  Take your best shot.  You’re only digging a deeper hole for yourself.

There are other ways, however, to include others and contribute to ending stigma and social exclusion.  Dr. Rosen suggests:

Faced with such a child in the park or at a restaurant, too many of us just stand there and stare. Instead, notice the twinkle in the child’s eyes, even if they are half-hidden behind smudged, thick-lensed glasses. Return the smile, even if it twists unusually or is wetter than what you’re used to. Wave back at him when he jerks his arms toward you, and say hello, even if it’s hard to understand exactly what she’s saying.

These children, and their families, will notice, and feel welcomed.

This is true for all of us for we are all differently-abled.  Every single one of us.  There is no one who is 100% perfectly-abled in this world.  Some of us are just better at compensating for our deficiencies than others.  I think when we can all finally see this truth, then we will see that we really do have something in common with that odd, flapping kid at the playground.

You’re really not that different from him after all.

 

 

 

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