Every Day: Shifting the Narrative

Down Syndrome Uprising (DSU) is hosting a blog hop about every day advocacy.  The question DSU poses is: What does your every day advocacy look like? For me, it is about shifting the narrative. Every day, every single one of us participates in a collective narrative. Every word we choose becomes part of this narrative. The idea of being an advocate doesn’t come naturally to me; LP had to shove me into that role. Nonetheless, now that I’m here, I’m having a hard time shutting up.

I have three stories…

One.

We signed Mouse up for summer camp this year.  I got a new parent information sheet by email.  Potty training policy, lunch policy, emergency procedures, yadda yadda.  Then I get to “Children with Special Needs”.  Hm.  This is what it said (name of camp provider removed):

“[Our] spring, summer and winter camps welcome children with visual impairment, hearing impairment, Down’s Syndrome [sic], language/speech delays and other disabilities. However, we are unable to accommodate children who have significant physical, sensory or social/emotional disorders or who have special needs that require more support than we can provide with a 1:6 staff to child ratio and keep all children safe in our classroom space. At [our] sole discretion, we may allow parents to provide, at their cost, an aide for a child with special needs. Please provide full disclosure of your child’s special needs so that we may assess our ability to serve you and your child. [We reserve] the right to remove any child from camp for any reason with a full refund. Please contact our General Manager at (510) xxx-xxxx to discuss your child’s needs prior to enrollment.”

Translation: We are cool with some special needs but not others.  Don’t go and assume we can make it work for you.  We will put our policy about kicking kids out of our camp in this section, just so you make sure to read it.

I remember that day.  I calmed my frustration and typed up an email on my phone to the camp provider, pointing out how despite their clear attempt at including children with special needs in their program, what they actually did was unnecessarily exclusive and arbitrarily drew lines that didn’t exist.  We had friends coming over in ten minutes and the Taters ran around the house wreaking havoc.  Chipmunk had somehow taken off her pants (again).  Mouse was despairing about some injustice or another.  LP kept interrupting his nursing session to look up at me with his adorable, milk-drool smile. Friends came, Chipmunk found her pants, Mouse got over her despair. We had a good night.

A week later, I got an email from the executive director of the camp, apologizing and asking for feedback on how to rewrite the special needs section.  She took every one of my suggestions, and thanked me.

Two

Mouse attends a play-based preschool.  It doesn’t mean it is a free for all.  All the materials, themes, and activities are all chosen with certain goals in mind.  They have monthly and weekly themes.  A couple of weekends ago, we got this in an email:

“In the upcoming weeks we will be exploring how people are differently-abled.  We invite you to loan us or give us canes, casts, braille books, children’s crutches, walkers, or wheelchairs. We would also welcome anyone who would like to come in and talk to the children about a device he or she uses, such as a wheelchair, etc. Let us know if you have anyone in your community who would like to do this.”

I know some of you might be scratching your heads at this point.  What is so bad about this?  We weren’t actually sure, but felt uneasy.  Curious and concerned, Latke and I asked the school what exactly their plan was. The most telling sentence of their response was this:

“We will read books and engage in activities which will help build understanding and empathy for people who have different abilities than are typical.”

Still don’t see my concern, eh?  Think about it. You sit down a room full of 2-5 year olds and you start pointing out the differences in a group of people, drawing an arbitrary line between “different” and “typical” and then tell them, “Have empathy for those people.”  What are you saying?  If I am one of the kids in the room, I get the message loud and clear.  There are some people who can’t do things like you, and that is sad.  Try to be nice to them and see their struggles.

My kid’s preschool was about to embark on Pity Training 101.   There was no way in hell was I going to pay for someone else to teach my kid to pity her own brother.  Awareness is one thing.  Pity, no thank you. Please don’t get me wrong, I was glad Mouse’s school wanted to tackle the topic of disability at all, but there is a fine line between awareness and creating stigma, no matter how well-intended.

So one morning, I sat down with the two directors.  I held LP, who happens to fall into this “differently-abled” category, and (tried to) calmly tell them why I believed it was counter productive to teach young children that some differences in the human condition need extra empathy.  I tried to explain that in fact, this might only further highlight differences rather than underscore similarity, creating a label of “otherness”.  Chipmunk ran around the play area moving piles of mulch into inappropriate locations.  LP made spit bubbles and tried to get the directors to smile at him.  It was clear that what I said to them that morning had never, ever occurred to them.  They modified their curriculum.  No Pity Training 101.

Three

On January 12, 2013, Ethan Saylor went to a showing of Zero Dark Thirty.  At some point, he was of the idea that he would stay and watch the movie twice without paying for another ticket.  Security was called.  There was anger, confusion.  The man’s caregiver attempted to intervene, having called the man’s mother to help diffuse the situation.  The security guards refused to wait and began escorting the man out.  They restrained him improperly.  They crushed his larynx in the struggle.  He suffocated face down on the floor, calling for his mother, over the price of a movie ticket.

There has been no independent investigation into Saylor’s homicide.

Since then, an entire grassroots community has come together in order to shift the narrative around Saylor’s death. Local law enforcement and even our own national Ds organizations would have you believe that Saylor died as an unfortunate consequence of his own genetic condition. Many others believe that he died from the the pervasive lessening of certain groups of people that goes on in our culture today. The latter narrative rings true for me.

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So what does my every day advocacy look like?  I use my phone a lot.  Thank goodness for smartphones and cheap monthly plans.  I’m pretty sure that LP thinks that my phone is a breastmilk remote control; it comes out every time I nurse him.

I have found an entire community fighting to shift the narrative around disability.  Sometimes, the shift is relatively painless–a matter of a single email, a single conversation.  Sometimes, the shift is excruciating–reliving a painful story of a life taken too soon.  I think we must all keep talking, despite the pain.  I see it happening all around me. Parents steal moments during their busy days for one email, one conversation, one message.

Each word we utter shifts the narrative a little bit further, every day.

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