Monday, October 28, 2013

A unique stink

During this month of awareness about Down syndrome many of the better pieces of advocacy (note: not awareness)  I've read have been about unique humans, about being and becoming oneself, about difference within similarity, and about individuality. As an antidote to the homogenizing rhetoric, sweeping generalizations, and the unfairness that is the stereotyping all too ubiquitous, this is good. This shift in rhetoric when talking about people with Down syndrome is getting us closer to finding true acceptance into the ranks of unmarginalized humans for people who happen to have Down syndrome.

But what makes people with Down syndrome unique? What makes a person who they are, a one of a kind? What makes a person different? What makes them an individual?

The short answer that suits my purposes for this post, to all of those questions, and the point I intend to make, is that it is NOT the number of chromosomes in a person's cells.

Having Down syndrome does not make a person unique, or extraordinary, any more than having strong fingernails, or a high intelligence quotient does.

Having "an extra chromosome" (are you as tired of this expression as I am? I hope so. It's not extra, it's a third 21st) will not mean one is a 'daisy in a sea of poppies', it doesn't mean I, as a parent to someone with Ds, suddenly found myself vacationing in Holland when I thought I was on my way to Italy. I've actually permanently relocated to a different planet altogether, called parenthood, and I understand that on this planet no one has an identical cottage-pod to ours, there are monsters - big, small, many, or few - in everyone's backyard, and happiness comes in many forms.


Having Down syndrome makes a person roughly 1 in 6 million*. Much like my specific nationality makes me 1 in 6 million**.

My nationality is part of my identity, but it's far from what makes me unique. It's only a tiny part of my identity in my everyday life, and only sometimes do I let it swell to a size that others can recognize. Lately really mainly when excellent school systems in the world are discussed. At those points, I'm a FINN. Sometimes I use it to add to my quirkiness, other times I use it to almost justify my actions. But however I choose to utilize this piece of my inner being, the fact remains that I choose how I project my identity out into the world.

While I can't say how my daughter feels about her Down syndrome as part of her identity - she's a toddler, I doubt she knows what Ds is, most times I doubt she knows what a hippopotamus is, let alone something as interesting to a 2-year-old as identity - I'm pretty sure she'd rather not be just Down syndrome. In every single encounter ever, or even most. I'm just guessing here, but like most people I know, she'll likely grow up to embrace and reject, ignore and include, in ever-fluctuating ways, all of the varying facets of her specific humanness at her disposal.

Not facets under an overarching umbrella of Down syndrome.

She might grow up proud to be a Finn, a Dane, or a Mexican, all of those elements of an identity being at her disposal. She might mesh the three. She might embrace her multilingualism or reject it and prefer one language over the others. She could wish to have brown eyes and curly hair or delight in her wispy locks and blue eyes, or she might change her opinion on her looks on a daily basis. She might be quick to speak her mind or prefer to stay silent, observing. She might find herself feeling naked without her glasses or think that they're too much of a hassle. She might want for people to think of her as an artist, an athlete, a regular Joan (or a Joe, or, well, person), or nothing even remotely like that. There might be times her having Down syndrome could come in as an important unifying facet, and times she'd wish it away from under the gaze and awareness of her surroundings.

I can't know until she tells me. Neither can anyone else.

There could be and will be an infinite number of things, facets, parts, shards, elements, traits,  ingredients, qualities, and more that will play into what makes her unique. Not in the least the perception of another person. The interaction. The dance. In tiny ways we are born anew in each interaction. This is not news, but that this is just as true in the case of a person with Down syndrome, to many, just might be.

She will not be unique because she has Down syndrome, she will be unique because of how everything she is composed of comes together, shifts, reflects, and intertwines, with Down syndrome in the mix, one ingredient.

She is not the real her "underneath that extra chromosome."

When people say that they hate Down syndrome but love their child fiercely I find myself unable to relate, unable to even understand. I know that when they say this they're saying this out of concern, frustration, or fear, but I wish they'd understand that it isn't really Down syndrome they hate, it is the society that continuously works to disable a person with Down syndrome, beginning with what follows after some milestones are not met in a timely manner all the way to expecting proof of worth and humanity rather than regarding those as the starting point they are.

It would make me immensely sad had my parents hated the fact that I was born a girl. When I was born they understood that being born a girl in the society that I was born in at the time I was born meant that I would never be awarded quite the same possibilities, opportunities, or respect as a boy would, while more restraint and respect would be demanded of me simply because of my gender. They knew that I and them would have to fight harder for me to have what I deserved for being human and that they would have to attempt to change the way that the society worked, but they didn't for one second hate the fact that I would one day be a woman and not a man.

Because that would have been the same as hating me.

I don't hate Down syndrome. I don't hate my child.

Not a photo of my kid.

* I realize that estimates of the global number of individuals with Ds vary.  I'm cool with this number for now though. Multiple sources and all that.

** I'm a Finn. There's a register. We're organized </stereotypefont>.

Tuesday, October 22, 2013


I'm not someone regularly referred to as an 'older' parent and neither is the Viking, but we did manage to spend ten whole years of married life before we ever seriously considered becoming biological parents. There were times that I thought that motherhood wasn't in the cards for me and other times of rather serious contemplation of adoption, eventually foiled by our respective nationalities combined with our nomadic lifestyle, or the child's existing familial ties. We had discussed parenthood, of course, but much in the same way we had discussed any potential countries we might spend a few years in. A possibility, something to ponder, a new avenue, but not a must nor an inevitability.

Much along the lines of "But how will becoming parents affect us?"

Oh how off track can one be? Affect us? How about what is it going to be like for the progeny?  

However, after ten years, somewhat on a whim after some lifestyle alterations, we decided to give it a go. To see whether a pregnancy would take. And promptly conceived on the first try. Because - of course. Quite an unexpected outcome. Took us 16 store-bought pregnancy tests and one blood draw at the doctor's to believe the news, and quite a bit of blind faith in nature doing its thing to keep believing it. Finally, largely due to this nature's attempts at trying our faith in the pregnancy we quickly found out that our daughter would have Trisomy 21.


So I've never not accepted the diagnosis. We've never not accepted the diagnosis. It was never really a surprise or a shock. There was no grief or mourning. My being pregnant on the first try, on the other hand, was earth shattering. Exhilarating yet scary. Life- and direction-altering. After the beginning of the pregnancy, us learning that it might be possible that a live little being would be at the end of this thing, well, that was almost incomprehensible.


Down syndrome was a blip on the radar that altered the potential directions in the minutest of ways, while the overall direction stayed the same - to boldly go where much more is expected from you (mostly by yourself) than you ever realized - bravely into parenthood. A new yet permanent territory completely void of exits. 

And I wondered. What would it take to be a good parent, a good provider, a good mother. What would I need to know and do to make it in this new place. How could I be the kind of parent my daughter could accept. The kind of parent she could look at when she's all grown up and think "My mother may be loud and obnoxious and not nearly as funny as she seems to think, but man, I lucked out. She loved me and laughed with me, took care of me, and brought me up to be someone I can be proud of."

That's what I still reflect on. Constantly. How I can be the best mom for my kid. How I can make it so that she can grow to be the kind of person she wants to be. How I can make it so that she can make her own choices, make them well, and make them so that they make her happy and her life good. How I can help her grow into her own person. 

I anguish, and I know I don't know, but I accept that, and can only try to see things from her point of view. 

I can't see yet how she feels about Down syndrome, how she feels about having it, and I can't even begin to guess how she'll feel about it or having it in the future. No one can. What I can see clearly, however, are the systemic injustices that currently await her because of her Down syndrome. I can see the oppression, the Othering, the segregation, the mystification, dehumanization, and the reductionism in perpetuating stereotypes, the lack of supports and access, the prejudice, the discrimination, and the hatred she'll face because of her Down syndrome.

I can see the ways in which the world finds her unacceptable because of her genetic condition. 

But I don't have to take it. I don't have to accept it. I can fight it. Because if I don't I won't be the kind of mother she deserves. 


Participating in the ACCEPTANCE blog hop on Down wit Dat.

Thursday, October 3, 2013

When we Slip and Slide - A Lament

Nope. No actual water in this post.

What is raising awareness? Is it asking people to realize that something exists? Is it factual information? Is it trying to wake people up to the reality around them? Or does it carry with it the connotation that there is something one should be aware of so that it doesn't sneak up on one, so that one is not, let's say, affected by a condition?

Lately, I've been having an increasingly difficult time with seeing raising awareness as something that results in a purely positive outcome. It is no longer enough for me to say that we need to move on from awareness, that awareness is fine and all, but that we need to do more. Now I have to go and question the whole idea of 'raising awareness' too. But then again, that's what I do: I can't just, for the sake of Frank and all of his penguin minions, accept things for what they are - good and pure and nice and not meant like that. </sarcasmfont>

I always have to dig, wonder, question, and reflect.

Dammit, if I'm not just "full of hate" and "looking for things to be confrontational about." Ho hum. Yes, more sarcasm.

But October is Down Syndrome Awareness month. There will be many people who will be especially vocal about Down syndrome, many bloggers who will be doing a blogging prompt called 31 for 21, which essentially means that they'll be writing a post to raise awareness about Down syndrome every day of the month of October. I wish I had that kind of blogging energy or the inspiration, but there just isn't enough coffee or wine in this world for me to blog every day (also, there may be too much good stuff to read to actually produce any stuff of my own). I own that. Last year I managed one post. This year I'm not even going to preface this post with a bunch of excuses. You all know I spend a lot of time just sitting chasing a wily toddler drinking thinking not cooking reading doing laundry resetting and degooifying the 'puter, the iPad, my phone, and the DVR living and being generally a big wet blanket, right?

I'm excused and can just harp from the sidelines. Awesome.

There will be many, many posts about Down syndrome. Countless cute, some not so cute, and maybe a few 'educational' photos. Lots of talk and stories, and the like. Plenty of dispelling of false or antiquated beliefs and completely wrong information. Some complaints. Many funny anecdotes and observations.  Some facts, many should-be-but-maybe-not-exactly-are-facts, and perhaps a few beliefs and observations masquerading as facts. Still, lots of good, lots of community, and lots of love.

Love is always nice. Isn't it just?

But sometimes we I have to be contrary. Sometimes I have to embrace my anger at the society as a valuable tool, turn it into outrage, and challenge the very things I apparently should not be questioning. Because if things make us feel good, help us get by, or help to keep the boat from rocking, if they make us feel like "we're all in this together," they are beyond reproach. Huh? And questioning ideas written in stone as far as Down syndrome goes would just be mean and divisive and not beneficial to the cause.

It could fuck with the kumbaya.

Yeah. There'll be things in this month of blogging I want no part of. Because raising awareness -  especially when this 'raising awareness' opens the door to pretty much anything one wishes to say about whatever that awareness is being raised about - does not necessarily promote meaningful inclusion, acceptance, or equal rights. Which, incidentally are the cause I'm interested in.

Awareness does not necessarily lead to acceptance. Ideally it does, but ideally I'd also be blogging every day this month to a receptive audience, and always have the sun shine when I need to get across the Target parking lot with a toddler and a couple dozen pounds of Halloween candy. And ideally I'd have no desire to eat said candy. Ideally my kid would just stick with saying the "no" when she doesn't want to eat something and skip the grand display of 'here, this is how much I will not eat this crap and will instead place it in your lap, on the chair, and on the floor'. Ideally.

But that's just not how stuff shakes out. Or doesn't. Egg stains, people. Egg stains.

Sometimes raising awareness about Down syndrome becomes about a heightened sensitivity to that which all too easily makes a person with Ds the Other, and worse yet, people with Ds a unified, homogeneous group Other. Awareness of a condition can lead to the idea that people with the condition need to be handled or dealt with in a certain way, differently from those without the condition, and potentially to the notion of differing expectations of the people with the condition. Raising awareness about Down syndrome, the genetic condition, can easily chip away at the individuality of a person with Down syndrome, the people who have this genetic condition, by drawing on generalizations and sometimes even stereotypes, and by linking the condition with a person's identity to such an extent that the person's other identities will always take the backseat, if the observer is even willing to entertain identities beyond 'a Down syndrome person' to begin with. In reality, any awareness about Down syndrome focusing on anything specific (I use this word while understanding that there is nothing purely specific to Trisomy 21) regarding Down syndrome will naturally work to Other people with Down syndrome for the unaffected observer. Awareness can erode individual personhood by zeroing in on perceived commonalities and differences from the 'general populace' in a way that directly and simply links them to that triplicate of the 21st, instead of making all of the necessary connections, such as the connections to and considerations of intellectual ability, gender, upbringing, nationality, daily routine, age, height, placement in the order of siblings, religion, genetic makeup, ethnicity, social circles, hair color, education, physical ability, disposition, and countless, countless, other outside factors. I say 'outside', because the importance we attach to any of these factors, including one's chromosome count, comes from the 'outside', the social constructs at work in our environment.

My child does not enjoy music because she has Down syndrome. She enjoys music because she has existed since before her birth constantly listening to it, because I enjoy music, because she's been enrolled in music classes since she was 6 months old, because I sing to her, because her father sings to her, because her grandparents sing to her, because if I run out of avenues to entertain her I put on Baby Signing Time - the ones with all of the songs, because she sees that music makes the people around her happy and content and it's part of the celebration in our lives. Yes, the love of music is in her genes too, but she doesn't enjoy it because she has a third copy of the 21st chromosome.

Notice the difference?

Awareness can all too easily become about "Down syndrome things." It can slip from medical conditions slightly more prevalent in the population with Ds to complex behavioral patterns directly linked to the chromosome, insidiously enforcing Othering and, in the worst case scenario, allowing for medical professionals, far too quickly, to brush off valid medical issues that need attending to with "We often see this in Down syndrome," and simply resort to awareness instead of taking action (See what I'm doing here, making too simplistic a connection, a connection that kind of sounds like it fits and in a way it does, but when you really think about it hides behind it a much more intricate process?)

Granted, this looking at perceived commonalities can make us parents of individuals with Ds feel safe and secure in shared experience, but is it really worth it? Do I need 'support' and 'community' more than I need for the world to accept my child as is, without a laundry list of 'Associated with Down Syndrome'? Do I crave similarity and things made simple more than I do the adventure and acceptance of the unknown that is the individual life I lead? In reality, Down syndrome is not even a syndrome. It's a genetic variant called Trisomy 21, not a group of co-occurring symptoms. The symptoms of Down syndrome are after all such horrifying inflictions as a single palmar crease, epicanthic folds, impaired intellect, and other life-threatening abnormalities, none of which are present, ever, in the general population, but are always, always present in Down syndrome. There really should be a pill, you know.

Excuse me while I scream in frustration. Having to be that facetious and liberal with italics does that to a person, you know.

(There would be a really cool gif right here of someone notorious screaming, right after rolling their eyes, if I were able to create one. Or understood what gifs are, really. Next century, I swear.)

I like a nice community feeling, of course I do. Do I believe that having Down syndrome should naturally lead to membership in a community, a tribe? Is there anything so specific about Down syndrome that my child needs to have others in her life who also have Down syndrome, have a doll that has Down syndrome, or have her parents associate with other parents of children with Down syndrome? No. I do believe that there may come a time that my child will enjoy having friends who also have an intellectual disability, and/or will have a hard time keeping friends who do not have an intellectual disability, yes, but that doesn't have anything to do with Down syndrome specifically. There may also come a time that she will not want to play with some kids because they're not into playing 'zoo' or building with legos, and there might come a time she won't want to hang out with someone because all they speak about is the crappy music of the latest Justin Bieber, and, well, there's just more to life than tween pop.

I'll let her find her own way.

Ideally, I'd like to have her find it without having a certain type of awareness hanging over her head while she's trying to go up and talk to a kid, sign 'play', and then rip a ball right out of that kid's hands like that's what it means to share (true story, y'all). In the future, she might not always fit in because of how our society treats people with intellectual disabilities, but because of her Down syndrome? Only if we let it become synonymous with her identity.

Ideally, I'd like to be a part of a larger disability community as an ally. A community which unites because of how the 'able' population in society view and treat their disabled fellow humans, not because I'm interested in romanticizing the extra chromosome in my daughter's cells. A community that doesn't commiserate and isn't heavy handed with honey (and fundraising) when in fact vinegar is called for.

So while I celebrate my child in this month of October, it being her birthday month and all, and in all the other months, and while I have no problem whatsoever with Down syndrome in general, and my kid's Down syndrome which I wouldn't wish away in a million years, specifically, I wish we were part of a community that comes together as a resistance formed because of the segregation and oppression of those with Down syndrome, not a community that unwittingly sometimes contributes to the Othering of my child and others like her (See what I did there? That's how easily we slip and begin sliding...).

Anyhoo, who's in for a little overthrowing? I'm free most Saturdays and come with wine.