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?

15 thoughts on “Cutting Our Teeth on a Paradigm Shift –

  1. Yes, a paradigm shift. That’s what we need. Does anyone else feel like the kind of advocacy the NDSS gives us is keeping our kids in the place of “mascot”, for lack of a better word? What I mean by that is all the stories of kids with Down syndrome getting voted homecoming king/queen, videos of kids with Down syndrome being passed the ball because the teams already winning, my daughter being “the most popular kid in school” but yet I see that she’s NOT seen as equal by the other kids. She’s seen as “special”….

    • I fully agree that our kids deserve every bit of equal rights and treatment that everyone else has…I get that. I also agree that as a whole, it’s time we get mad and take a stand against our kids’ lives having less value than any typical person. I also agree that the powers that are supposed to be fighting/standing up/advocating for us and what we want for our kids futures are not doing enough in regards to the “Ethan” Saylor case. It is definitely time for change. What I don’t understand is the sudden attacks on the recent efforts to bring awareness…which leads to equality.. Lately I have seen one post after another pissing about the silly socks thing. I don’t understand why anyone in the community would cut down ANY effort to get us where we are trying to go. If you wore the socks, instead of just complaining about the campaign, you would know that it in some small ways worked. Wearing insanely mismatched socks in public caused people to ask why…which gave us a platform to talk to strangers about DS. Same thing goes with people groaning about the publicity about prom queens/kings, our kids on team sports, and so on…these things are bringing public awareness that our kids want the same things that typical kids want. They show that our kids are not just drooling mongoloids, sitting around getting fatter and waiting to die. They show expectant parents that everything doesn’t have to be doom and gloom. And is it so hard to believe that a kid with DS could be wildly popular simply because they are likable? My kid is unbelievably confident, outgoing, and absolutely hysterical. She is exactly the stereotype…loving and sweet, affectionate, funny, caring. She stands near the doors at her school and greets every kid that passes her. Those kids don’t smile and say hi and give hugs because she’s special. They don’t know her name because she’s special. They didn’t invite her to attend prom with them because she’s special. They don’t attend her parties because she’s special. They do it because they like her…she is pleasant to be around…she is part of their teams and groups…she tells great jokes and smells like cotton candy. They didn’t just put her in the game at the end because we were winning…they took her with them to camp and argued over who got to room with her, then gave her full participation at every single game. They changed their go to charity from Komen to Buddy Walk. She has been a part of their world since they started school and soon she will graduate with them (even though she has been in multi-handicap classrooms this whole time…GASP!) They see her as one of them. She isn’t stubborn, angry, or hard to get along with. She only sees the good in our world. They know if they are having a bad day she will lift them up. Who the hell wouldn’t want a friend like that!!?? I’ve been walking this walk for 17 years and have met just about every obstacle one could meet. Idk…I’m just a woman with opinions…maybe I’ve just had time to come to some deeper acceptance of our fate. Or perhaps I’ve become numb. Something I have learned is that our kids ARE special…they ARE different. They make up a tiny percentage of the population, and very very few of them possess the ability to overcome the differences. They are different physically and cognitively. Forcing the idea that our kids are not different down the world’s throat, in my opinion, is just not the way to gain equality. SELF ADVOCATES!!! now THAT is a great idea. Where do we find them? and how do we get the world to hear what they have to say? Is that not what we are seeing when we find cute little news stories about a kid with DS doing something typical? Or when we see videos of people with DS doing ordinary jobs or getting married?

      • We may not agree with each other on everything but I really like and respect what you are saying how you get your point across. Let me think about the “socks” a bit more.

      • i think you make great points. They are 100 percent valid. Thaks for the reality check.
        I don’t think it needs to be either-or (which is your point) but I do think it has to be both. We wouldn’t celebrate Rosa Parks if she sat quietly in the back of the bus wearing mis-matched socks. I’ve seen pictures of people in the segregated South wore arm bands, but I also know they didn’t JUST wear arm bands.

        Saying this as someone whose kid would be voted Kindergarten prom king, I fear the implicit statement the feel-good stories make is, “Look at this one: they’re not ALL lost causes.” While our experience is not as long as yours, I’m not convinced the ability to overcome their differences is related to the nature of their disability as much as how it was nurtured, Perhaps our children would have withered under different circumstances.I could be wrong, but like you, I’m not going to assume that.

        There is no doubt DS creates profound differences and those differences vary among individuals.. It is the value we place on those differences. Whether they are better or worse or the same as other human beings can be debated, depending on how you define those words. Whether they’re human beings cannot.

        Governments around the world have just pledged more than $1 billion to fund an effort to finally figuring out how the human brain works, I hold hope we will come to find DS doesn’t degrade the brain, but is wired in such a way to understand the world in different ways. i don’t want our kids to be more normal, I want them to be self-actualized. I want the world will be collectively embarrassed by the history of mistreatment, If we typicals are so smart, how come we can’t figure out a better place for these people in our world?

  2. A very well written post!! I like your point about the DS Advocacy groups not being led by individuals with DS. It does make me question motives…except the IDSC…that’s an intriguing group.

    One point…we are closer than you think to this end for the Not-Doing-S**T-Society (aka, the NDSS): “Here’s the deal we are this close to figuring out how to hit you in your pocket-book.” It’s time for the NDSS to become irrelevant. We can do our own buddy-walks. I’m not sure what else they do for people with DS.

    Keep writing!!


  3. We have to leave the old, paternalistic views behind and move forward. Both the American bastions of DS are based on the charity model, where a few shekels can make the difference in some poor unfortunates life. That’s why I like the CDSS… self advocacy is at the forefront.

  4. I agree with your post. It is time for this shift. And I think the self advocacy and leadership of DS groups needs to have representation of folks with DS. And yes, the new normal will reveal itself in a President’s address and a myriad of other experiences. Maybe the community made of people with DS and advocates need to have a Stonewall type experience. Just in the last century alone to now so much has happened to make us take to the street.

  5. I will share a secret with you. Everyone thinks their kid is “special.” I didn’t realize it until you said it. I do feel like my son is special. My son doesn’t have ds but maybe I should let go of it too.

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