114. Living Behind Walls

“Living Behind Walls”

There’s not a lot I can say about the past couple of weeks. They’ve been chaotic and exhausting. But A deserves his privacy and I’m sure he thinks we are ludicrous and logic-free, so I won’t be getting into details.

I do want to say something about living in a town that pays lip service to inclusion. And that’s probably a lot of towns, making ours nothing special even in its stunning mediocrity.

If I could pick up our house and move it somewhere else, I would, in a heartbeat. We are too tired to pack up and move, but I don’t care anymore about pretending that the hypocrisy and erasure and silent denial of our situation are in any way acceptable.

If neurotypical or higher functioning children are able to thrive here, I’m truly glad for them. Because no one should have to live the way we do.

If every child matters, then mine should too.

There is nothing noble about our reality. No pedestals we wish to perch on. No parenting awards we wish to earn.

To have a high needs child is to see the most adept footwork ever—the sidestepping of almost an entire community. It is to meet the most talented masons ever—the school district employees who stonewall us. Such a nice tall structure exists between us and you, you probably don’t see us disappear from school life. From civic life. From your life.

I am angry today. If you think I shouldn’t be, do me a favor and keep that thought to yourself. Use your fervor to practice inclusion in your own community. I mean it. Do something tangible and offline that will break down that wall for another special needs family.

If you don’t plan on doing that, okay. But I won’t be entertaining any sermons about my attitude. Not today. Not ever. I have drawn from the well of my own reserves for years, and it is way past time we all stop thinking of what people like me do as some kind of specially ordained karmic venture, or of people like my son as angelic, blighted, or not anyone else’s problem. I will show up at community events when community finally starts to mean something to families like mine. Not before that.


One thought on “114. Living Behind Walls

  1. Radha
    So well written and I feel your indignation you feel with all the sidestepping from likely the inconvenience people or institutions feel. Your ask of the reader to reconsider how they hold special needs as one enounters them gives me room for pause having read what you wrote in preceding paras
    Thank you

    Liked by 1 person

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