Advocacy

Down Syndrome Awareness Month (US) is slowly drawing to a close.

As you all pretty much know by now, I'm not exactly a fan of "awareness".  At all, actually. There tends to be a lot of confusion surrounding this and terms like awareness, advocacy, anger, prejudice, hatred...words that we encounter almost every day in this month of 'awareness' (if not every day for some of us).  It is this confusion that I hope to address.

To begin with, what most people attribute to awareness is actually advocacy.   When you teach, correct, explain, speak out, represent, whether subtly or more energetically, you are advocating for your cause, not spreading awareness.  Awareness comes in the form of recognition.  Trust me, if the demeaning imagery that people post in my groups and on my page is any indication, people are very aware that Down syndrome exists.  They may be utterly wrong and hateful, but they know it exists.  People with DS may (or may not) have reached partial visibility, but more awareness is not going to change that.  It's not that simple.  Advocacy will, by continuing to promote and further the cause towards true inclusion. 
 
Over the years I've become a little soured with awareness campaigns anyway.  I have always been leery of the trinkets and T-shirts and the like; the object may wear the symbol of whatever it is that it claims to represent, but the money you just paid for that shiny thing just lined a private pocket.  The idea of someone profiting off of these sorts of things makes me ill, frankly.  To give a well known example, October used to be very pink for me.  Instead of surrounding myself with mugs and pens and every manner of pink object, instead I would participate in Grand Dessert night with a group of colleagues.  Any money spent was out of our pockets and 100% of the funds raised by the event went to Breast Cancer research. But still, everywhere you look this month:  Pink.  Football players wearing pink shoes, pink towels, pink gloves. Pink mugs, pink bracelets, pink soup cans and pink memes.  "Pink-washing".  This survivor puts it more succinctly than I ever could.

Is it fair to compare Trisomy 21 to breast cancer?  No.  Down syndrome is not a disease.  Yes, there is a motley collection of conditions that may or may not accompany the triplication of chromosome 21, but in itself it is not a killer, nor is it something to "overcome".  One does not battle Down syndrome, you don't fight your chromosomes.  It simply is: a visual, intellectual and often physical disability.  There is no "hope" needed, other than one day perhaps society will realize how society itself disables hundreds of thousands with the condition every day.  It is not something to cure.  Much like most of the pink paraphernalia too, most of the DS awareness trinkets generate profits for private pockets... or worse, organizations that do not see the civil rights of those they claim to represent as their main focus.  They are multi-million dollar corporations, after all.

Awareness, sadly, rapidly turns into a forgotten pile of overpriced junk and a banner that you walk by without giving a second glance.  Advocacy, on the other hand, lingers.  Even if a person disagrees with your stance, they are at least thinking about it to formulate an answer.

The beauty of advocacy is that it can take many forms.  It can be a quiet, one on one discussion.  It can be a discussion group, either in person or online.  It can be a blog, an article, a visual representation or piece of art. It can be a petition, a rally, a march. You can pick what works for you.  Awareness is passive, effortless and the results negligible (in fact, it can further the "othering" of those it intended to promote to inclusion).  Advocacy involves a little effort and the results are obvious in the disability community in the last 50 years.

Advocates ask questions and wonder how things will get better and what they can do to affect that change.  Sadly, in the world of DS advocacy, especially since it rests primarily in the hands of parent advocates, most people are fearful.  Fearful of the future, fearful of their own advocacy and dare I say it in some cases, fearful of their own children.   In Western culture, emotions are considered suspect, unproductive and the antithesis to thought or rational discussion.  As I've said before, I disagree wholeheartedly.  Anger can be a tool, a motivating force.  Anger can be the impetus, the catalyst that gets one moving towards affecting change.  Passion is what sustains that fire.

Sadly, there are many folks out there that are terrified of the possibility of insulting someone that might be an ally.  This in itself is a post for another day, yet it bears mentioning that anyone, myself included who asks why, who rejects this model of 'advocacy' is considered "hate filled", dangerous and ultimately a crack pot. 

I think folks need a reminder of what hate looks like.  This was posted to my Google community a few weeks ago:

[Image: caricature of an adult male with Down syndrome.  The caption reads
"Congratulations, your kid has Down Syndrome!"  The word balloon
from the man reads "I can count to potato".]

And then there is this:  neglect and abuse perpetrated by family, not to mention murder or attempted murder, stories of which are not decreasing in prevalence.  There is this, the historical systematic disregard of the those deemed "unfit" .  Let's not forget the wholesale extermination of those same people.  Not in the least is the systematic isolation, abuse and neglect of hundreds of thousands of lives at the hands of 'caregivers'.  

This is hate.  This is the stuff that motivates things like the image that I posted above and the concept of "control" and the same disregard that is being utilized here.

Asking why?  That is not hate. 

I am angry about continued injustice.  I'll wear that mark, your tattoo for that one.  But, it's for a damn good reason.  I am passionate about this subject.  I will continue to rattle chains and ask questions.  It is what I do.

People, regardless of ability, are people and should be accepted unconditionally.  Acceptance is not something that is earned or has to be proven.   Inclusion is not something that has to be begged for, pleaded for,  hoped and wished for, tiptoed around, afraid the eggshells will crush.  Both are words that get bandied about as well. 

That's the awareness we should promote.  Not the awareness of Down syndrome being a real thing that exists, but realizing how we view and treat people with disabilities.  Aware of the ableism, aware of the paternalism.  Ask every single being to examine how and why they see themselves as superior to others.  As better, stronger, faster.  More worthy, in control, able to make decisions. Aware of their own motivations, rhetoric and able views.  Then we'd be doing something. 

I'd advocate the hell out of that one too.

[Originally appeared on Down Wit Dat] 

Falling Inbetween

The other day, as I was rushing out the door to go pick up H, I grabbed Butler's "Giving an Account of Oneself." I thought I had yet to finish the book but when I opened it up, waiting for H to come from his office, I saw that I had underlined the last paragraph. I realized I had finished the book while very pregnant with Jude and thus in the midst of black hole brain that comes with pregnancy. I glanced over what I had underlined and was stunned into a kind of amazed silence. Everything that I had underlined, especially things with exclamation points, addressed the concerns I have been feeling over narratives, scripts, and stories. I loved how these ideas had been germinating for so long and now as I get closer to the year anniversary of finishing the book, I'm seeing the sprouts coming up. 

 "When we come up against the limits of any epistemological horizon and realize that the question is not simply whether I can or will know you, or whether I can be known, we are compelled to realize as well that 'you' qualify in the scheme of the human within which I operate, and that no 'I' can begin to tell its story without asking: 'Who are you?' 'Who speaks to me?' 'To whom do I speak when I speak to you?'" Butler 134 

 When I look over the ways we tell stories about having children with Ds (or any disability really) there appear to be two narratives. One says "Life with a child with disability is horribly hard. It's a life filled with drudgery, and hardship. Life with this child even when you love them is beyond stressful. It pushes you,the parent, into awful acts." With this story comes a kind of strange admiration borne of pity. Mothers with "normal" children can look at your story and feel good about their own "typical" kids. They can think things like "Oh you are so strong" which leads people to think that only "special parents" can have "special kids" and they are not that special. Our children become seen as burdens while, we, the parents are portrayed as beyond heroic giving all our actions, no matter how cruel or senseless, a validation. 

In the other narrative is the story of another kind of specialness. Your child is an angel. A miracle. God's love embodied in human form. This story says that our kids love better than other kid. They are sent to us to teach us how to be better humans. The extra chromosome endows them with super powers usually of love. This is the story that tells us that kids with Ds are "sweet but stubborn." The children in this story are always photo shopped beautiful. Perfect and angelic as they gaze out at the viewer. Passive. These are the children people exclaim over but that they don't see as quite human. These children do not grow into adults but are frozen in the world of a glossy 8 X 10. When I found I was pregnant with a child that had Ds, I found these two stories. There were very few stories where parents were saying "Eh I got a kid." I remember after Jude was born I found the blog 21 + 21 + 21 = ? and fell in love with the header on her blog "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay." Here was a narrative that was fitting what I felt about Jude. That fit what was going on in my day to day life. I didn't want to be sad about Jude having Ds. I wanted our life to just keep being our life. A life filled with chaos and beasties. A life where we sometimes felt like yelling in frustration. A life that was often filled with joy but sometimes felt like drudgery because you know after washing the 100th dish of the day it's hard to muster up enthusiasm. Basically here was someone who was saying "This is just life." Down Wit Dat wrote about this as well...about the need for a narrative that showed just how normal life is for her family. 

What I would suggest has happened for us is that we hit that horizon limit. We were faced with stories that did not reflect the "you" in our lives, and we had to write something new. We had to find others who were writing something new. There had to be another story because the "yous" we were seeing were not the "yous" in our lives. 

I want Jude to find the humanness of herself in the story that I tell about her. When I limit her to a stereotype on either end of the spectrum, there is not a lot of space to be human. In the narratives above, she does not qualify as a human. She qualifies as a flat representation denied the complexity of life. Right now I am the bearer of Jude's narrative because she is a baby and she can't give an account of herself. As she grows, she will ask me to tell her stories as all my children have asked. I will tell her stories about her fits of anger and frustration after getting stuck under the couch again. I will tell her about how she began to sing to me at ten months, and how it slayed me utterly and totally. These stories will accumulate as she gets older, and some day her voice will join with mine in the telling until one day her voice only will stand. But what will remain, I hope is the sheer normalcy of her life. The simple fact that our life did not get harder when Jude entered it. It got better in the sense that all of our children added joy to our family but it was not a miracle sent from God either. 

The simple fact is that Jude needs a story about acceptance and that is why I write about Ds. I realized the other day that while I understand why people use the word awareness, I find it insulting. What are we raising awareness about anyway? Do we really need to raise awareness about this third chromosome? Why should we? Jude is a human being and that is really all one needs to know. Her medical conditions or lack of them are not something that anyone besides I and her father need to know. We all have a list of potential health crisis due to genetic material and yet we don't advertise them to the world. I owe no one an explanation as to Jude's appearance. We assume a difference and we seek to narrate it. This what I see in most cases of awareness. It is not what I desire for Jude. 

Instead I want acceptance. I want Jude to be seen as she is which is a human being. Acceptance means being able to give an account of oneself that recognizes a relationship with humans. Jude and all people with intellectual disabilities deserve a story that includes failures, successes, giving up, not giving up, being sad, being happy, great joy, great sorrow, and most importantly real relationships with the people around them. Relationships that allow them to be both a "you" and an "I." 

And because I want this real acceptance--not a tolerance, not an awareness--I am willing to make a stand. It's easy to say the narratives that we tell our own. We lay claim to them. We say they are our accounting and that we have a right to share those stories. But here's the problem. Those stories also involve a "you" and if that you is being denied a chance at humanity is it ethical to share your story? Is it ethical to continue the narrative that dehumanizes? I have said it before and will say it again "Yes you have a right to your own emotions but you don't not have a right to let your emotions spill into the way another person is painted to the entire world." In our world of tell all memoirs we are reaching the peak of what it means to share, to own our experiences and our emotions. We throw out to the glare of the world everything. And sometimes we forget that there is more than just us in these stories. Giving an account of oneself must always include the others with whom we create. So while I may not be able to tell you what to write, I can critique your story. I can challenge it. I can tell another story. If that makes me divisive so be it. For my daughters' sake, for my son' sake, for the sake of those with disabilities of all kinds, I will remember that when I given an account of myself I will always remember that my "I" was not shaped in isolation. 

Perhaps most importantly, we must recognize that ethics requires us to risk ourselves precisely at those moments of unkowningness, when what forms us diverges from what lies before us, when our willingness to become undone in relation to others constitutes our chance of becoming human. To be undone by another is a primary necessity, an anguish, to be sure, but also a chance--to be addressed, claimed, bound to what is not me, but also to be moved, to be prompted to act, to address myself elsewhere, and so to vacate the self-sufficient 'I' as a kind of possession. If we speak and try to given an account from this place, we will not be irresponsible, or, if we are, we will surely be forgiven." Judith Butler Giving An Account of Oneself 136

[Originally appeared on Green Tea Ginger] 

Keeping it Real

I'm not unhappy.  My life is pretty good.

I know this will cause many of you to say "duh!" rather loudly, but there are a lot of people out there that still can't wrap their heads around this.

We're not unhappy.  Life is not hard.

Oh sure, we have our fair share of poopy diapers and kitchens that don't clean themselves.  There is drama.  There are skinned noses, hurt feelings and juice spilled from one end of my house to the other.  There is life, sure.

But we're happy.

There are a lot of things we would like to change, of that I have no doubt.  My husband is a stay-at-home Dad and I'm pretty sure he'd be perfectly happy to be back at his old job on those weekends when I work nights.  Surrounded by the aforementioned poopy diapers, swimming lessons, yell-y kids, an utter lack of privacy, quiet, and a complete thought; he'd be bananas not to.  But, he's not miserable.  The little ones go down for a nap at some point and the big one is content to hang out playing video games or quietly watching a movie in the mean time.  In a related story, I'd give my (honorary) left nut to be able to stay home with the kids.  Ok, I'd probably work one day a week, but to not have the responsibility of everything fall directly on my shoulders is a nice dream too.  Something for "when we win the lottery".  I think there are times when we would both change this part of our lives.

But, we're not unhappy.  Not in the least. 

Back in the early days, the just post-potential-diagnosis-but-not-sure-but-there-is-an-AVSD days, I was pretty sad.  I had a right to be, having just lost an Aunt I cared about very much (and didn't call much in her final years) and almost losing a very dear colleague in a horrific car crash.  I was also super pregnant with twins, super heavy, slow, in pain almost constantly and had to wear "Batman" anti-embolism hose that took me no less than half an hour to sweat my way into each and every day (and a nerve wracking 5 minutes to gently fix every time I had to pee, which at that point was eleventy-zillion times a day).  I was very sad when I was told about my unborn baby's diagnosis.  As time went on, I was told I was sad as I was "grieving my perfect baby".  Once they were here, once we knew about Wyatt's karyotype, once the twins were being kept alive in the NICU, I was told by a social worker and every piece of literature that I was handed that I was grieving.  As I continued to write updates to my family, that is how I described it.  Grieving.  Down syndrome was making me grieve.

I learned more about DS when I  got the babies home.  I also learned all about them, their individual personalities and got really into the swing of being the parent of infant twins.  It was then that I started to figure out my emotions a little more.  Ok, so DS wasn't what I originally imagined for the ONE baby that I thought I was going to conceive, but really, is that one little chromosome the source of all my sadness?  How about postpartum blues, post-surgical pain, recovery, or multiple personal losses?  In relation to my son's very real cardiac condition and the two fragile lives for which I was terrified, how about simple fear?  In retrospect that sounds like the recipe for postpartum depression, not my son's T21.  My own husband, upon hearing the "grieving" bit, argued with me.  "It's not like anyone has actually died!"  he said to me, exasperated. His mother had passed away suddenly in 2001 and it was this very real loss that he referenced now.  However, as told to us by that social worker that came to see us while we held our tiny sparrow babies, we were grieving our son's Down syndrome diagnosis.  It was only natural, after all. 

It took me quite some time to sort out my thoughts and feelings, probably compounded by my early return to work and the challenges I faced because of that.  As the children grew and my son became more of a boy and less of a baby, it became more evident how he was just himself, not some list of potential or actual diagnosis, not some 'special' baby, not the source of any familial discontent.  You see, I was told that my husband would leave me, that having a disabled, a "retarded" baby would ruin our lives, our marriage.  I was told by many "well meaning" people that it was a good thing that "Down's children" were so loving as I would have a forever child.  I was told by every medical source, by every appointment, by every medical professional that his extra chromosome would be the cause of a life of sickness.  I was told by a nurse that it was a good thing he was a boy, imagine how tragic it would be if he was a girl?  I was consoled for his birth, often multiple times a day.

I wish I could wave the realization of what I had attributed exactly to his extra chromosome off as a "D'oh!" or "A-ha!" moment, but the reality is I was deeply ashamed at my participation in the "love the baby, hate the disorder" mentality.  How I would love him "despite" his Down syndrome.  How as a family we would "overcome this obstacle".  You can see that here in past posts, as my writing changes and as I became more of the advocate that I am today.  Of course, I still had to really start to check my ableism at the door and realize quite a few more things, but you can see where I actually started to get it.

This month, being Down syndrome Awareness month in the US, you would expect me to be all over this like in years past. But, I'm not.  There's a lot of reasons here, ranging from current personal illness to personal perspective.  I'm not so keen on the "awareness" any more;  the colours, the gew-gaws, the posters.  Instead I'm all about the education or the advocacy part.  Even the activism part.  One could argue that I always was more of an advocate than awareness raiser given the topics of most of my posts in Octobers past... I may partially agree with you too.  However, as I've stated before, I'm done with awareness.

Instead, I'm going to advocate.  Hard.  It may not be pretty, it will probably seem to some like I'm shouting.  It may seem to some that I am full of hate and anger and all the things that I am accused of because I don't write about unicorns and rainbows and flatly refuse to accept things as gospel as they have been "always done this way".  So be it.  I will continue to challenge the stereotypes and whatnot that many people maintain as "fact" about Down syndrome.  There will probably be swearing.  This is what I do. 

That particular social worker is no longer telling new parents of children with T21 about grieving the diagnosis.  In fact, I've helped develop resources for new parents.  This blog is routinely passed out as a reference and I have been personally thanked by a great many people.  I am no longer misplacing my emotions onto my son.   He is no more or no less stellar than any other child of mine.  My desire from day one was to ensure that nobody else would either, even if I couldn't process or understand it properly.  We are not unhappy.

We're us.  Full of emotions and drama and all the little things that make up Team Logan.  Sometimes we're happy, sometimes we're sad.  Sometimes we're silly and giddy sometimes we get frustrated with one another, hell, even argue.  Sean and I worry about the things that other couples do, like money and our health and whether or not we're getting enough sleep.  The kids romp around here together, spreading chaos and love in their wake... and occasionally whacking each other with toys.  Down syndrome is literally a microscopic part of that, if it is really a part of that at all.

We're not unhappy. We're real.

I long for the day when no one is surprised at that statement.

[A banner for Down Syndrome Uprising, depicting the text "Down Syndrome Awareness Month,
with the word acceptance stamped over the word awareness.]

[Originally appeared on Down Wit Dat] 

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.

This post appeared originally on 21+21+21=?

The Space Between

When the Dr. called to tell me that my fetus had Trisomy 21, I remember the moment quite clearly. In that moment, before I cried or raged, I felt nothing. Not a numb kind of nothing. The kind of nothing that comes between breaths. A crystallized feeling where you simply do not know at any level what will come next. A moment where you have no idea what to even image. I have never ever felt this way in my life. I always knew where to place my foot so to speak. But in that moment, there was no script, no map, no path. I felt that my foot was hovering over an abyss of unknowing. It was not a negative space or a positive space. It was a nothing space. The space in between.

You see there was no script for this moment. Bourdieu would say that my doxa did not include this scenario. Butler would say that I was facing that misstep between the construct and the experience. I simply remember that I hardly dared to breath. That my skin felt inside out. That I was walking wrapped in cotton balls. That my words would shatter against the air. That touch would burn.

When I look back at the posts I wrote about that time, I realized that I was constructing as I went along. Trying very hard to find the words that would build some feeling about what it meant to be carrying a fetus with Trisomy 21. To bear that fetus as a baby into the world. To raise a child with Trisomy 21. I didn't know. I knew one story, and I had rejected it before Jude was even an imagining.

Because I had company in those early days it was very hard for me to construct a story. My mom had started to read "Expecting Adam" but I wasn't ready for much. I tentatively did some Internet searches. I read one or two stories but I couldn't fit into them. They were too big or too small. So I existed in the space between. I relished my friends saying "It's okay. It's good." Early on I did not hear that Jude was a special blessing, or any apologies for something that did not need to be apologized for. I knew those things would come because of the stories I had read. But for some reason, on that first day, they were not said.

Eventually I started to read, and I tried to fit on the stories. I told H that I was grieving the child I thought I was having, and he scoffed "What the hell does that mean? How is Jude NOT the child you were supposed to have?" I pretended that Jude was a miracle sent from God. I was being tested. God was giving me something that would be hard and beautiful. I did not need H to challenge that story. I could barely stomach it in my own head. I was so desperate to find a story that would fit. I was having a hard time writing my story because it was unknown to me. So foreign that it defied telling, one could say.

You see I didn't KNOW anyone with an intellectual disability much less someone with Down syndrome. I had never really imagined myself with a child who had Down syndrome. I had not prepared for this script. Strangely enough I knew how to feel if this child had been dead. I had gone to that dark place, and I knew what one should feel in that circumstance. But this one? I was lost, fumbling for meaning, for words, for language. All because I didn't have the encounters to know. To make human something that at this point was only an abstraction. A set of marks on a piece of white paper. There was no baby to make sense of what I was being told. Only a rather fuzzy ultrasound picture.

Before we moved to Athens, I wrote a thesis on how humans use stories, memoirs, to make meaning of their past in ways that reconcile that past to the present, to the future. I had chosen an odd memoir called Keep Sweet that defied many of the conventions of the way deconversion memoirs are framed. Debbie Palmer, a former member of the Fundamentalist Church of Jesus Christ of Latter Day Saints, seemed to be fumbling. She was in a place where, I argued, where she could see those gaps between what we know and what we come to find out. For the first time, I truly understood that moment. She was in the space between, and she was struggling to fit a script into this experience. She was grasping to make something of this nothing. It is like sculpting with sand and it does make for a pat kind of story.

Now that I am a bit further into this journey, with a baby sleeping on my lap, in a world where I think about Down syndrome every day but not about Jude having Down syndrome everyday, I realize that my experience is vital for a couple of reasons. Reasons that have often made me feel like I am a bit on the outside of a broader community. Because here's the thing, if people with Ds, and ID were really included then there would be a script. I'm talking about an inclusion that recognizes the humanness of all people. An inclusion where we would encounter a person with Ds on our daily walk, in the store, on the bus, in our class room. A world where we would engage and interact and develop relationships. If I, in my 41 years can only recall meeting and talking to someone with Down syndrome twice in my life then it does speak to how much further we have to go. And it's not just meeting people with Ds in the flesh, it's the fact that I don't read about people with Ds in academic papers. That I don't see their ideas in the boarder media. I don't see their art being talked about in art circles. When I read or hear about people with Ds, it is only in isolated places where I go only because Jude had Ds.

If the social world comes to reflect that the world is filled with difference, difference in abilities, colors, genders, etc than we have a richer script from which to draw. If we see kids with Ds on our TVs (yes, I know Glee but I'm talking about more than one show), if we see them not just as special additions but as fully included in the experience of life, we offer more. We side step the need for grief because having Ds could be just another variation in the vastness of experience. We need more scripts, more ways to understand that moment in between. Our stories are going to shape how another woman, like me, experiences that in between. I'd like to take her out of that space faster, so fast that it seems...well, typical.