Monday, March 18, 2013


Let me open with the most important message that I am ever going to give to you. A message I will shout from the rooftops as long as I'm here on this earth. A message that fuels my advocacy and activism and allows for me to leave good intentions and acts of kindness that are really moments of pity or charity in the dust, fallen by the wayside with other outdated and faulty notions. A message that I believe in with every fiber of myself, and that guides my parenting, my relationships, and my being.

Disability is natural.

Down syndrome is natural.

Trisomy 21, or Down syndrome, is a frequently occurring genetic variant, highly viable with life, and something that simply, naturally occurs. Down syndrome is not the other. In a parallel life, you could have Down syndrome. In this very life, you could have very well been born with Down syndrome.

And that wouldn't make you unnatural, challenged, broken, or less than human. You would still be you.

Down syndrome does not need to be fixed or 'normalized'. It needs to be allowed to exist as something that is an acceptable and natural part of some people, our equals in everything, regardless of their perceived capabilities. Meeting milestones, or being highly functional (whatever the hell that means) is not 'winning' at Down syndrome, or at life. Living life, and having equal opportunity for the same experiences as everyone else is what life is all about.

You know, being human. Having rights and responsibilities, and being able to decide what to do with those rights, and whether to honor those responsibilities. And, facing the consequences.

On the 21st it is World Down Syndrome Day. A special day for celebration and awareness. This year there's some weirdness about wearing loud socks to raise awareness. An icebreaker for discussion? In all honesty, I don't really think either of us needs an icebreaker for awareness. We're evolving.

We need to take action.

You might have gleaned from my last post that simple awareness is no longer doing it for me. I know better now. There is a need for acceptance. There is a need for action. A need to level the playing field. To make every single classroom inclusive in spirit and in space. To remove having Down syndrome as a negative in a college or a job applicant, as is being done in the case of race, gender, and sexual orientation. A need to embrace everyone's uniqueness and individuality without there being some who are 'more different' than others. A need to stop using language - and not just the word retard(ed), but suffers from, is inflicted with, a Down syndrome patient, a risk of Trisomy 21, them - that degrades, demeans, marginalizes and dehumanizes those with intellectual disabilities. A need to focus on how exactly Down syndrome and those with Down syndrome are portrayed and represented in the media. Unfair and biased portrayals, as well as fluff pieces that utilize those with I/DDs for inspirational feel-good in the mainstream need to be publicly denounced.

We need to actively advocate for acceptance and inclusion, even if it means alienating people who are uncomfortable with having their worldview challenged.

We need active acceptance and inclusion, not just passive awareness. We need active involvement by everyone, everywhere, not just slactivism by adding partial visibility with a click, or a smile, or a token birthday invitation. We need a community where admission is not only by a chromosome count, either way.

You don't have to love someone with 47 chromosomes to understand, you just have to be human.

There MUST be an organization that barks up and makes a terrifying stink every time someone in the media, in medicine, in legislation, in the public eye, anywhere in the world, gaffes. Be it the r-word or a homicide swept under the rug. There must be an organization that ensures that there are repercussions for marginalizing acts, for drawing on stereotypes, for exclusion, for dehumanization by language. There must be anger and outrage that leads to shifts in attitude and to organized action. Instead of intentions, we need to focus on consequences, on what is, not what was intended.

We need to stop accepting crumbs, in the fear that if we don't, we might not be 'liked'. 

Why, hello there REVOLUTION. You're needed now.

People with Down syndrome are not defective. Society is defective.

Yet. This is not about legislation, or about funding, or about research. This is about attitudes. This is about human rights.

And the question of who counts as human.

This Blog Symposium brought to you by:

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Friday, March 8, 2013

Why I do what we do and then some.

Now that I've written about the Spreading the Word to End the Word, as in ending the use of the r-word (retard and retarded), all of the different angles I could have approached it from keep swirling in my mind.

I chose to make it personal. About my kid, about Babe. because it very much is personal. It is about you hurting my kid and my family when you say it.

I decided to take my words and punch with them. I threatened.

Why did I choose that approach?

While I was driving yesterday a radio commercial came on, part of a campaign targeting drunk driving. The message was that it is more expensive to drive drunk if you get caught than if you just take a taxi. This approach does not and never has appealed to me. I'm the person who talks back to the radio and says "Forget about money, what if you kill someone by accident, what if you hurt someone? Ever think about that?" or something like that, usually probably peppered with some 'fuck' and 'fucking' in there too. Because that is the approach that appeals to me. Not just the swearing though, the caring about others and about not hurting people.

I'm not overly shaken by the thought of a huge fine. It's only money.

I'm not overly shaken by the thought that I will get hurt myself if it's the direct consequence of my own bad choice. I'm an adult, I make my own choices, I live (or not) with the consequences. I usually instinctively try to stay alive and thus don't normally even contemplate driving drunk.

I am, however, very shaken by the thought of hurting someone who I don't know, whose only mistake is not taking into account that a complete stranger can't be bothered to think things through and put themselves in other people's shoes and consider how their bad choice could affect an innocent bystander.

This is not the first time I've heard the financial loss approach to drunk driving so there must an audience out there for it. I get it. It must hit home with some people. Good for them for not driving drunk, even if they're not worried about killing their neighbor, but having to work overtime because of a monstrous fine. Whatever works.

Whatever works? Really?

This has made me think of this whole blogging thing I'm doing here, and the way that I'm doing it. About writing about Down syndrome as a point of advocating for people with Down syndrome, or with other intellectual or developmental disabilities. Blogging to make a point instead of processing something, or recording something, or even rejoicing in something. I have moved on from awareness. Awareness is no longer doing it for me, or for Babe.

We need more. We need it all.

I don't just blog for awareness, I blog for complete acceptance and for real, meaningful inclusion of people with Down syndrome in our society. I blog to level the playing field. I blog about Down syndrome to change perceptions, to find others who think alike so that together we can be stronger, to make the world better for Babe and for everyone with Down syndrome. I take my kid to the park so that she can enjoy the fun that is gazillion screaming toddlers and I blog about Down syndrome so that she can be in an inclusive setting in a classroom once she goes to school and not be marginalized as 'too different from the rest of us'.

I don't want to journal and I don't want to show you what our life is really like. I want to change you for the better or if you've already arrived I want to be your friend.

I want a life for my kid that is in no way made harder by false impressions of Down syndrome and people with Down syndrome.

This is where I'm at, and where I fit in. In a revolution.

I want you to love like I love. Just love.

Tuesday, March 5, 2013

Spread the Word to End the Word and Quit It with the Attitude while You're at It

Did you know that today is the official Spread the Word to End the Word day? To stop the use of the r-word (retard and retarded).

I did. I'm more than well aware. It is a huge deal to me. I confront complete strangers in public who I hear using the word.

Yet I've never written about it. How is that?

Well. To say that the r-word is a global issue would be exaggerating. It is an issue in the English-speaking world. So I think in our previous life our family has really been sheltered from it. Don't get me wrong, the attitude that goes right alongside with using the r-word is a global problem, or at least has been everywhere in the world we've ever lived or traveled, and while that's not everywhere, it's quite a few places.

But what does attitude have to do with a simple word?


You can take pretty much any expression and if you twist it enough you can infuse it with enough contempt to use it in a derogatory way.

You can say "I hate my computer, it's so slow and crashes all the time, ugh, it's so exquisitely extraordinary."

There is nothing good about exquisitely extraordinary in that sentence, especially if you add tone. In the sentence the words are twisted to mean something bad, something slow, something to be hated. Anything can be an insult if a language user is determined enough. However, some words already carry a negative connotation, even if they weren't born that way.

Which brings me to retard and retarded. And why we should all just stop using those words about anything.

The truth is that our crappy/ misguided/ misinformed/ hateful/ wrong/ dehumanizing/ marginalizing attitudes about those with intellectual and developmental disabilities have twisted what originally was a medical diagnosis to mean something hateful, broken, slow, bad, less than.

"I hate my computer, it's so slow and crashes all the time, ugh, it's so retarded."

When you say this I know you don't mean to call my kid retarded, but what you are in fact, whether you explicitly mean it or not, saying to me is

"I hate my computer, it's so slow and crashes all the time, ugh, it's so like your kid."

Because according to most, some in authority too, she is mentally retarded, because if tested her IQ would probably score somewhere below what is statistically considered to be the average. Still, in our world Babe's supposed IQ doesn't mean anything beyond an arbitrary number, one which we are completely fine with as a part of her and as a part of what makes her her.

Until you take what is sometimes inferred from that number and use it to mean that something despicable is like my kid.

Then there's hell to pay.

Respect instead. Think. Never impose on others what you would not choose for yourself. Remember the ethic of reciprocity.

My daughter is your equal.

And don't even think about using developmentally disabled, kehitysvammainen, mindrebegavede, or intellectually disabled to talk about your crap computer unless your computer is this:

And I very much doubt it since this is my kid. Being fucking awesome with a box full of chainsaw, as usual.


This is my contribution to the Spread the Word to End the Word symposium held by the good folks (yes, I'm one of the good folks, nothing quite like patting yourself on the back, is there?) at Down Syndrome Uprising - the blog (yes all the cool revolutions have blogs now too). Click on the links. Read what other people have to say about the R-word.

This Blog Symposium brought to you by:

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