Tuesday, April 2, 2013

Cutting Our Teeth on a Paradigm Shift –

We are mad as Hell and we are not going to take it anymore! Sound about, right?
I believe we may be living at a historic time with regard to the human rights movement of people with Down syndrome. It is historic in that it is seen not just as ‘a progressive shift’ but ‘a radical shift’. And it’s seen as ‘radical’ in comparison to wearing kooky socks on their behalf.  Meaning these people are just so beaten down any attempt to bring them to street level is seen a paradigm shift.
In some ways it is a movement unlike any other and it is one that is very much like others.
How this struggle is similar –
By any standard this is a group of people who have been the recipients of great violence and discrimination. The Global Down Syndrome Foundation does a better job than I could at delineating the civil and human rights struggle of people with Down syndrome. Following this link for a timeline of events.
How this struggle is different than other marginalized groups -
File these under the general category of benevolent paternalism:
The primary advocates are parents. People who love their children yet some of us are still talking publically about how they had to grieve the fact they gave birth to a child with Down syndrome. Wait a minute that could actually go up to “similarities”. I talked to two friends yesterday who are both gay. They shared with me their parents loved them but just wished they weren’t gay. As adults they said it still hurts and is not really unconditional love.
Parents can also be the proponents of some stereotypically behavior. For me, I have been guilty of how “special” my kid is rather than how similar he is to anyone. And – I write a blog titled ‘atypicalson’ so you would think I know better. (I know he is different – that is quite obvious – but he is also very much like ‘typical’ children. Letting go of his “specialiness” is a mother’s struggle. I cannot completely let go of that. This is me being completely honest)
There is also the “happy”, “stubborn”, “willful”, “angry” generalizations. I cannot account for where the “happy” generalization came from. That’s just a whole lot of people who don’t actually know anyone with Ds.  As for “stubborn”, “willful”, “angry”? The way we treat these people I am surprised “homicidal” isn’t in the mix.
Then we have the advocacy organizations. Unlike – NAACP, GLAAD, NOW – the leaders of Down syndrome advocacy organizations such as the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC) are not lead by the discriminated group. People with Down syndrome do not serve as the executive directors or as the majority membership of the board of directors.
This is where it gets tricky. How do we insure these organizations are truly speaking on the behalf of people with Ds? At what level of involvement in an organization should a self-advocate serve to make sure people with Ds are represented by an organization’s mission? And – who decides that mission? And should the mission change with the times?
File this under Thank You Not Very Much Jocelyn Elders -
Brief aside: There are two things I dislike mentioning when it comes to Down syndrome and me: one, I am adoptive parent and two, I am pro-choice. The first statement diminishes me and the second just gets me in a world of shit.
What other discriminated group is being eradicated prenatally –  in 2013?
This choice is often based on bad information and irrational fear. It is also dispensed by someone who doesn’t have Ds, has not raised a child with Ds or maybe doesn’t even know anyone with Ds. It’s a lot like informing your vote based solely on Fox News. The difference is that in the Ds debate, there are no other channels. Everywhere it’s the same message: Quicker genetic tests that save families from suffering the consequences of such a diagnosis is treated as an objectively good thing and the assumptions that lead one down that path are not adequately challenged.
I wish my husband and I could do a PSA on why you should at least consider keeping your baby. It would go something like this:
I was 47 years-old and my husband was thirty-three years old when an adoption worker with our State’s foster care system asked if we wanted a two-year old boy who had Down syndrome. We said, “Yes”, without really thinking about it. I don’t know why. I seriously eff’ing-can’t-for-the-life-of-me remember why it didn’t seem like a big deal. We put more thought in to which washing machine to buy.
Our kid is the Bomb. The washing machine sucks. If we can do it you can, too.
Apparently, my husband will not get to speak in the PSA. He is very good looking so he will serve as the telegenic non-speaking parent of a kid with Down syndrome.
Some radical thoughts for the present and the future:
Presently we are confronting the issue of Robert Ethan Saylor’s death. We still need that independent investigation into to his death. It would help if the Department of Justice would feel our ‘tension’, if the National Down Syndrome Congress would do more than release a press statement that an independent investigation is needed and demand one and as for you National Down Syndrome Society – Seriously get off your ass and do something! Here’s the deal we are this close to figuring out how to hit you in your pocket book.
We need to reach out to self-advocates with regard to this struggle. We have to if this movement is to be a true and righteous representation of people with Down syndrome. And, then, we have to listen.
For us as parents – we need to raise our children to be self-advocates. We must show them how to advocate on their own behalf.
Finally, I cheered with many others when President Obama included the gay rights movement as part of his last inaugural address:
“We, the people, declare today that the most evident of truths – that all of us are created equal – is the star that guides us still; just as it guided our forebears through Seneca Falls, and Selma, and Stonewall…”
When will people with Down syndrome be included in an inaugural address? Meaning how long will it take for a Paradigm Shift to become the New Normal?

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