This post was somewhat revised on November 12, 2013. 

I do not have Down syndrome and chances are you don’t either.

The human rights movement of people with Down syndrome is a movement being advanced for people with Down syndrome more than it is of people with Down syndrome. Meaning however well-intentioned this movement is – and I believe it is – most of us are acting on behalf of our children. It is a paternalistic or maybe more accurately a ‘maternalistic’ movement.  We are merely the guardians.

In January of this year Ward, Thorin and I watched the documentary ‘Marley the Movie’ on the life of Bob Marley.  The film is a crash course in the birth of a revolutionary. My thoughts after watching it were, “Why hasn’t the idea of ‘One Love’ included people with Down syndrome?” “Where is that movement?” (Later of course I learned there were many parents already on the J-O-B.)

Over the next several days I crafted that question into an idea. I wrote an opening manifesto, my husband came up with a name and our son provided a defiant fist. I launched a Facebook initiative called Down Syndrome Uprising.  The five or so months since then have been an amazing ride. I have been changed in the most positive way by this experience and those I have had contact with.

In that first post I wrote – “Let us start from “Our world has people with Down syndrome – that’s a good thing”.”

The Defiant One

That was my (extraordinarily) oblique way of saying: “Your grief story hurts my kid with Down syndrome.” The variations on this are: “Your ambiguity on having a child with Ds is not revolutionary”; and, most recently, “Your empathy for parents who starve their adult children with Down syndrome is just-fucking-repugnant”.

( I am not referring to a person’s private thoughts or conversations. I am referring here to the public sharing of these thoughts. I am stating that is not effective messenging in a human rights campaign.)

As an adoptive parent I have never had to think about ambiguity and Down syndrome. Thorin has Ds. End of story.

Thorin was what is known as ‘a ward of the state’.  He came to us in a state of limbo. His biological parents had not yet lost their  ‘parental rights’. For several months we lived with our child who could be taken from us.

The Guardian ad Litem of Thorin’s case, aside from bearing an uncanny resemblance to the Manson girl, Susan Atkins, also shared her doppelganger’s dispassion for children. She told me, “Think of how hard it was for his parents to find out they were going to have someone like Thorin?”

That is not an enlightened or revolutionary thought. The question is I told her, “Imagine what Thorin’s expectations were for coming into this world you effing-stupid-C?”

Thorin exists in the world in spite of how someone else feels about him. That goes for many people with Down syndrome.

This manifesto is unfolding. This movement is fluid. As long as our children are not a part of it – it is evolving.

I have recently left Down Syndrome Uprising (DSU).  The initiative  I started and imagined was to be a place of irreverence, edginess, humor, accessibility and kinship. That turned out not to be the case.