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”.”
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.
LOve this! Love your raw honesty ans passion!!!!!!!!!!!!!!!!!!!!!! One love!!! Yes I too sometimes. well now always, wonder when educational institutions are talking about educating children or “all the children” what do they really mean… who does that include or not include???
Oh, Liz Tree, you are always good to me. Thank you for commenting. It means a lot. Best, kwp
Really appreciate this, and the clear passion in your writing. Thanks for sharing. Keep up the good work :)
Frightening to write and post. It means a a lot of hear this from you. Thank you for taking the time to tell me. Best, kwp
If I ever get to meet you face to face, drinks are on me!! Thank you SOO much for sharing your thoughts on this.
I’m a new addition to the group of parents who have children diagnosed with DS (Little Bird, my son, is 7 months old).
When Little Bird was born, there was no ambiguity for me, either. I didn’t grieve or mourn or feel at all sorry about Little Bird’s diagnosis. In rather crass language, I just didn’t give 2 squirts of piss that Little Bird was diagnosed at birth with DS. He was my son, he was alive, and all was (and still is) right in the world.
It wasn’t long before I realized I’m in a very small minority.
Its unsettling to me that there is a lot of defining of DS (How to talk about it, What “message” the “movement” should have, and even How to spell it) by people other than those actually diagnosed with DS.
I’m sorry my thoughts are disjointed – a post on this very topic is bubbling its way through my thinking/drafting process…prbly weeks away – but I just wanted to say thank you.
Your post was cathartic for me.
Well, I am almost crapped my pants posting it so your words are of great comfort to me. Yes of course drinks on you. Best, kwp
Another thought provoking post. I always enjoy an opportunity to ponder/question the status quo.
Thanks, Erin. Your opinion matters to me.
Thank you! I find it horrible when mothers or fathers of children with Down Syndrome write openly in their blogs that their first feelings were very negative, and how they cried and cried and wished they could return the baby. Of course their feelings have changed since having their baby, but those feelings they had in the beginning reflect our society’s feelings towards people with disabilities: sorrow, horror, shock. It’s wrong. I hope that one day I can offer a home to a child who I can love no matter what.
Thank you for commenting! I think this public storytelling is not in line with the needs of a human rights movement. Above all else equality.