Natural

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and acts of kindness that are really moments of pity or charity in the dust, fallen by the wayside with other outdated and faulty notions.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:

Add your WDSD post now! 

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.

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?

Everything.

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.

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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:

Add your R-Word post now! 

What? Was I yelling?

Let's get one thing straight:

You do NOT have to accept my daughter because she has Down syndrome.

I'll rephrase:

She does NOT need to be coddled because of her intellectual disability. Coddling and understanding are two vastly different behaviors.

I'll say it again:

It does NOT make you a good, tolerant individual if you accept my kid because she has Down syndrome.

And again:

Having Down syndrome does NOT mean she should be treated in any specific way. She should be treated according to her particular personality, behavior, and skill set.

Once more:

She is no more different than any of us are. She is just as different as all of us.

Maybe you didn't catch me the first time:

She should be fully accepted and included by everyone because she is a fellow human being and until she proves that the acceptance and inclusion were the wrong things to do - let's say she robs a bank at gunpoint or poisons her elderly yet wealthy husband's plate of porridge - and has to be removed from society into a prison, she should be accepted as as much of a member of society at large as you and I.

Deal? Am I getting through? Can we agree on these simple details about who is human and who is not and what that means, and get on with the posting of pictures of Babe covered in food, or playing with her pretend aquarium? Yes?

This is someone going to places (or at least the kitchen) as long as you let her.

It's a regular Halloween here everyday.

Why do people fear Down syndrome?

Why is it scary?

Why is a family "safe" if their child does not have Down syndrome?

Why is having Down syndrome "bad news"?

As I am typing this I look at Babe. She's crawling around, getting to the drawers on the television stand and pulling out DVD covers (she has a good arm on her as far as flinging stuff goes), moving onto the magazine rack and testing out her 6 teeth on the corner of a 5 month old People magazine (I really should clean more), bear crawling it to the staircase and pulling to a stand at the not-so-securely mounted gate (we have no business owning this house), every once in a while glancing at me, smiling, waving, calling out to me and to her surroundings in general.

You know, spooky stuff.

Yeah. I can see why she'd be dangerous, with her stealth crawling speed and unwavering focus that can in no way be upset by oh, I don't know, calling her name or rattling a tube of puffs near her face.

Scary as hell. This little girl of mine.

Oh, it's not her you say? It's the Down syndrome. It's not her, she's not frightening, just that extra chromosome in every single one of her cells. Makes sense. Completely separate from her - that foreign material. Oh wait, it's not foreign, it's the exact same make-up than those other two 21st chromosomes. Not foreign at all. Just more of that cell-y goodness that makes her, well, her.

But babies are not scary. No way, they're cute, that button nose is adorbs, you interject.

Fair enough. Fast forward to her at 19. A young woman, possibly not quite as tall as her Scandinavian (this means quite gigantic in a nice way) parents, very possibly with pale blond hair, and sparkling blue eyes. She'll most likely be pretty loud and like to have the last word (or sound if she isn't verbal) in any situation. I'm betting she'll have a quirky sense of humor (we can see that budding already), and she'll probably still be rocking a pair of frames. She might be into art or music, or, shudder, sports. She'll have friends and a family who think that she's awesome when she's not being a pain in the ass know-it-all (drawing from experience here, people).

Scary now?

Shit! Wouldn't want to meet her in a dark alley.

Now you're just being facetious, you say.

And you're right. And I realize this is not something to be taken lightly.

I know you don't fear my child, but I wish you didn't fear Down syndrome either. It is a part of her. It makes her who she is, Her Babeness can never truly be divorced from her having Down syndrome. I honestly believe that without that extra chromosome she would be a different kid.

I don't love her in spite of her Down syndrome, and I don't love her because of it, I just love her. And I wish everyone else did too.

That's why I get really angry sad when I see an article like this (I'm linking straight to the second page because that's what's really got me in uproar).

Let's make a few things clear here. Down syndrome does not have to be a hurdle unless there is some need for a speed of development that is the species-typical statistically measured average (an empty statistic, for zeussakes). Having Down syndrome does not mean that you will also develop leukemia. There's a greater chance, but that's all that it is. In fact a condition called life comes with the risk of many health conditions, and I hear living, and living well, makes everything even worse. Accomplishments and milestones are not what life is about, at least not for me. For me life is kisses, decadently ripe avocados, a good run, smiling, black coffee, celebrity gossip, humming along to music, sunrises, the smell of rain, a scraped knee, unconditional love, wine, friends, a tiny little puppy, newspaper ink on fingers, and so much more. Anything else would just be silly. Having an intellectual disability does not mean that a person will get abused. In fact, I find it insulting that any of the discussion would focus on those who might get abused instead of those who will abuse. To me a discussion like that is akin to saying that rape is somehow linked to the people who were raped instead of the rapist (as in women who wear short skirts...). And that's more than silly, that's disgusting. Discrimination, judgement, and hatred towards people with Ds are in part fueled by the misconception that people with Ds are somehow different from the 'rest of us' (different is good, it's just that we're all different, not that people with Ds are different together from the 'neurotypicals') or 'inferior' as in not conforming to the species-typical standard of development, of being (read with a dripping sarcastic tone, thanks). Lastly, according to studies, parenting a child with Down syndrome makes a marriage stronger, not weaker, unless you have a crappy attitude about your offspring. A crappy attitude will likely kill a marriage, any marriage, or so I've been told.

Sheesh.

I'm glad I've joined a revolution for getting rid of the bad, bad rep Ds has in the world today. Want to help? You can join too. Right here at Down Syndrome Uprising where we're all about highlighting the kind of crap that fuels the fears and responding to it in a (more or less) civilized manner (no restraining orders yet, and I'm kidding, I am*). We want the world to see individuals with Ds as we see them - individuals, equal to everyone else. Not as a separate group to be babied, looked down upon, put on a pedestal (no special angels at DSU), oppressed, stereotyped, marginalized, or referred to as them (you know the tone).

*For later legal purposes



So if you're a hard ass like us who won't let crap slide, we'd love to welcome you to the fold (or does that sound like we don't swear, because if it does that's not the way it was intended [pun very much intended]).

The good kind of revolution (meaning we won't bite unless you give us a reason to)

I'm part of a revolution. I really am (with admin rights to a Facebook page and all that fancy stuff - my first ever. Hrm. Cough. Yeah. Both revolution and admin rights. I know, I'm cool like that).

The Down Syndrome Uprising.

It began here at a typical son, and is becoming something even more awesome here at the DSU Facebook page.

And here and here.

(In case you're wondering, I'm pointing to my heart and then to my head.)

DSU works towards the world (YOU! Now I'm pointing at you, we're doing a lot of that in our house at the moment, you know, pointing in general, not always at you though...) embracing people with Down syndrome, towards changing outdated and wrong perceptions of Down syndrome and what it means to have it, and towards putting information out there that is much, much closer to all of our individual realities of what it means to either be a parent to someone with Down syndrome or what it's actually like to have Down syndrome.

I know my reality is not your reality, but I also think that there's a lot out there that isn't anyone's reality, or was someone's reality a lifetime and longer ago. And that needs to change.

But what does this 'embracing' really mean? I've seen a lot of it lately. To some, disappointingly, embracing and being vocal about it, like starting a blog with lots of cute photos and many words that really cannot be said enough times, seems to mean that one hasn't accepted Down syndrome (No, seriously), to others it means putting someone on a pedestal built of Facebook likes and media attention who really just did what any decent human being should do, such as happened in the case of the Houston waiter who refused to wait on a family who didn't wish to eat in the vicinity of a family whose child had Ds (for reals), and to yet others it means glossing over the condition with such language and attitude that no one is left wondering just how big of a cross to bear a person with Down syndrome is to a family not "safe", but expecting a child with T21 as is evident from this segment on the Today Show (and they have a medical 'expert' who doesn't even use people first language. Geez).

For me this (pointing at the blog, not at the above paragraph though, and then pointing at someone's toes, but that's a whole other non-post) is embracing. What I'm doing right here. Not giving up on awareness and spreading it. Sometimes with pretty pictures, sometimes not, but with plenty of token (not) advocacy. I may not be so aware of my kid's Down syndrome, but other people sure are. Yesterday at the hospital, while sitting outside the lab holding Babe and minding our own rather spit-y patty-cake, we were made from across the waiting room. This time around the person who'd spotted Babe wanted to be near us and talk to us because she too had a kid who has Down syndrome and she needed some positive vibes for the open heart surgery her daughter is having as we speak (so yeah, let's send some. Right now), but there have been other times where someone has spotted Babe and instead of embracing her as a regular toddler, has either made allowances (She knows how to wave hello and good bye and she should do it at the end of Story Time when all the kids do it), or assumed that she has glasses because she has Down syndrome (yes, that makes you nearly blind now too), to give a few examples. I know that sometimes allowances need to be made, accommodations will happen, but they should come after the fact, not pre-emptively due to low or no expectations, and I realize that Babe's poor eyesight can be linked to her having Down syndrome, but the route the observer takes should be more complex, and perhaps allow for her having bad eyesight just because, like in the case of that other kid, who wears the same glasses that Babe does, +6 prescription and all, but doesn't have Down syndrome, and just has bad eyesight, just because.

So I guess I'd like my genes and parenting skills to be at least equally blamed for Babe's shortcomings as Down syndrome is, perhaps even more. You know, embracingly.

Because I am guilty.

So if you're out to do some embracing, join us, like our Facebook page, spread the word, and feel free to blame me, in all senses of the word. There can never be enough advocacy. Thanks.

Cute photo. Deal with it. There's plenty more coming.

I already win

How does this work again?

I write stuff on here and someone comes and reads it, thoughts are provoked, minds changed, awareness enhanced? On a good day. Something like that?

No?

Instead, some Brazilian steals photos of my kid for some creepier than creepy purpose, some meme site links to me while I'm in the hospital with my kid and way too busy and worn out and concerned and exhausted to find out what exactly is going on.

Yup.

So why in the hell and its army of hockey sticks do I worry about good intentions that come off in the wrong way or ignorance or people first language when there are absolute sickos out there who either will do something so creepy I don't even want to think about to a picture of my kid or get some strange satisfaction from figuratively kicking a person with a disability who they only know from a picture and only see as someone weaker than them?

Why would I fight minor misconceptions and positive stereotypes when there is a huge population out there, loose in the neighborhoods of the world, whose existence is so base that they aren't just purposeless and insignificant, but they actually add evil and negativity into the atmosphere?

Because they don't matter. Really, they just don't.

The people who matter are the ones with enough humanity left in them for them to be able to see themselves, even for just a blink of an eye, in someone else's shoes, in someone else's life. People, who with the right kind of education and awareness, can make the world a better, a more positive place for everyone. Not actively contribute to its downward spiral into the abyss of mean.

So go away you creepy Brazilian and get some psychiatric help. You need it. And the person making my kid into a mean meme, get a life, read a book, love someone, you can make your life into something that matters, some day. To someone. Even if that someone is the (currently probably a very disappointed) person who gave birth to you.

I have more significant battles to fight. I have a happy life to live and in that I have you already beat. And you know what? I pity you. Your life must really suck.

Sorry.

I win.