To be known

The very first picture book I wrote (still tucked away in a folder on my computer) is a story called “My Big Brother is Different.”  I have not submitted it yet—for one thing, I think the title is horrendous—but I looked back at it today as I was writing about Cara and her brother, Mickey.  The picture book sums up many of the joys and frustrations in the relationship between a seven-year-old girl and her developmentally disabled brother.  One of the most important pages in the picture book really ties into the part I’m currently writing in my WIP today.

Other kids don’t understand.

They stare at him, and smirk, and point.

It makes me want to scream.

They don’t know my brother.

They don’t know my brother. It’s a recurring theme in much of my work.  Probably because it was a recurring theme throughout my life.  And I finally understand that it’s about prejudice.

My brother looked different.  He acted different.  He was different.  And the common pre-judgment (prejudice) that people share when they see a disabled person is that he or she is less of a person than anyone else.  (S)he is without feeling, or nuance, or worth.  So it’s okay to stare, or point, or make assumptions that they are simply taking up space in this overcrowded world and ignore them.

And nothing could be further from the truth.

In the last sixteen months of my brother’s life, I posted notes on his hospital and nursing room walls for the staff to read whenever I couldn’t be there with him.  I wrote about his favorite show (Walker, Texas Ranger) and his favorite activities (fishing with his cousin, John, and going to McDonald’s with our dad).  I wrote about the family he loved, the sister he lost, the jobs he used to hold with his supervised work crew.

And when Bobby passed away, I tried to write many of those things into his obituary.

I wanted my brother to be known. 

And he was.  Nurses and doctors and PCNs took the time to interact with him, to recognize his warm spirit, to become attached to him.  Some of these people would have done so whether I wrote notes about him or not.  Bobby’s spirit would always shine through if you took enough time to get to know him. 

But some people would not have taken the time, or would have been uncertain, or afraid to interact with Bobby.  Those were the ones who might turn their heads when I took Bobby out in public in his wheelchair, who hoped that if they ignored us, we would go away. 

I thought that, as an adult, it wouldn’t hurt so much.

It still did.  But it was different. The difference being that, when Bobby was fifty and people would turn away rather than help us get through a door with a wheelchair, or would ignore his cheery ‘hi!  have a good day!’, I was old enough to understand that they were operating out of fear. 

I had learned that I could smile and say ‘good morning’ and ask for help despite the averted eyes, and that many people would take my cue and relax.  And that those who didn’t probably deserved my pity, rather than my anger.

At the age of seven, it was harder to handle. 

So, as an adult, I take my pen in hand to continue speaking for my brother, for my sister, for other people’s disabled sibs and for anyone who is ignored or taken for granted.  Did my brother have a stubborn streak?  Did my sister have a temper?  Would they put their arms around me if I were sad, or make me laugh?  Does that little girl in the wheelchair have a richer life than you may ever know?

Maybe my writing can open a door on someone else’s life.  Someone overlooked.  Someone who deserves to be known.