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.

So.

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>.

Unacceptable

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.

Blip. 

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.

HYPERDRIVE. I REPEAT:  PREPARE FOR HYPERDRIVE. 

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.

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.

Believe and live

I love this article by Anita Cameron about different kinds of disability advocacy tools. She argues that nothing will ever get done without direct action. "Right on, right on," I say. I believe that too. Nice is not enough. But still, taking direct action implies we all know, and agree on, just exactly what we are fighting for. Right?

So what is it? What am I doing here and elsewhere?

For me it all comes down to acceptance, meaningful inclusion, and equality.

None are currently a complete reality, but they all are the logical next step for humanity which evolves and progresses (and thus isn't on a crash course with some sort of an apocalypse). But most people don't seem to know that.

We need vision.

So much about all of this is vision. So much about this is expecting more than we think will happen, faster than we think anything will happen. It is expecting a large scale societal change and behaving as if this large scale change is imminent. Practically already here. Happening as I shout.

It is about not getting discouraged and just doing what's best for my specific kid or myself, right here and right now.

I don't want to only focus on the haters and the trolls, I want us to sway those who lazily vacillate, those who have good intentions, and those who just don't know any better. I want to scream our vision the loudest. To make it the all-encompassing truth, the reality, the now.

I want to kill the positive stereotypes and the well-meaning misunderstandings about a 'mystical' chromosome. I want to stop allowing for reductionism for inspiration's sake because it is the lesser of two evils.

In my vision the evil trolls will be recognized as the minority they are. Those closeted sociopaths. I'm not so worried about that anonymous, faceless person who spews his or her vitriol in an online comment to an article about a person with a disability. I'm more worried about my kid's future teacher, her friend's mother, my neighbor, and that guy who packs my groceries. I worry that they won't really believe in inclusion because they haven't experienced it, that they won't see it as the most logical thing to do because no one's told them that it is.

I don't worry so much about hate as I do lazy ignorance. I don't worry so much about someone blowing off steam, than I do those minds who've never even really thought about people with Down syndrome or other disabilities as fellow human beings, because they're so used to understanding 'able is normal' as a fundamental fact, just because it gets insidiously reinforced at every turn. I worry about those who perceive people who are disabled as inspirational, marginal, apart, similar amongst themselves, and here on earth for purposes external to themselves, purposes other than living their individual lives. A perceived unity of the experience of disability concerns me.

Most people follow, they adapt, they go with the flow. We, as advocates, need to define the current.

We have an audience.

We can set targets all we want and meet them, but unless we actively work to redefine the rhetoric - the way most people view disability and especially intellectual disability, language and all - we'll always have new targets, new ways of oppression, and the fight will never end. We can't just tackle the immediate, we need to reconstruct the foundation. Sometimes that involves peering inwards too, at our own world view and thinking. It has very much meant that for me, at least.

There is a lot of discussion about being united and unified in our efforts, but how can we? We don't agree. For me there are things that simply cannot coexist if an ableist way of thinking is to be dismantled.

I can't be all "accept my kid as is, but in case you do figure out how to suck that extra chromosome right out of her very cells, please call us, we're interested." You can't say "my child deserves to be included in everything her peers are, but you know, if she gets bullied or we feel she's getting frustrated with learning math, relocate her into a nice self-contained location, for her own sake." We can never say "achievements and normalcy are arbitrary social constructs and we need to understand that, but hey, more therapies to help my struggling child the better, before she falls too far behind her peers."

I will have to constantly examine my own thinking, my own language. Will it be my child who is frustrated, unhappy, struggling, or will it be me? Am I fixing my child for the world instead of the world for my child? When did a life of achievements become the life?

We have to turn the tables.

We have to say "There is no discussion. Inclusion has to be a fact as it is a practice that benefits all. Inclusion is the natural state of things. Through inclusion everyone's experience, everyone's life will be just that much more normal (pun very much intended), and everyone will be accepted as a member of the human race and society, with whatever that entails, attempts at peaceful coexistence and conditional love."

We can't try to sell or market disability: "please accept my kid, she is not just a useless eater, she can do all of these things." Doing things isn't a precursor to humanity, being human is. We can't mystify or romanticize the chromosome and ascribe to it some specific, sometimes even supernatural-sounding traits or abilities: "Looksee here, that chromosome's special, if we eradicate it, we eradicate our pathway to the mysteries of cancer treatments or Alzheimer's." Three copies of the 21st chromosome are a part of 6 million people worldwide, and that should be enough to warrant general scientific interest. Or at least I'm going to act as if it is.

I will believe it and live it.

Disability is natural. Down syndrome is natural. It's about time everyone knew.

******************************

Participating in the Down Wit Dat blog hop themed 'Autistic History Month' so really stretching (ignoring) the definition, but apparently 'advocacy' posts are welcome too. Maybe? This post sort of brushes on rethinking the world, which Autistic History Month is essentially about in its wish to write into history those previously ignored and rewrite the faulty parts. No? 

The state of my advocacy. Or reflections on plants and outrage.

I think lately the premise of this blog has been to sort out what it really is that I'm shouting so loudly for here, elsewhere on the internet, and in real life, what it is that I feel the need to get out there, and what has and continues to grate me about where we are currently. I have been mulling over what it means to be an advocate, what counts as advocacy, and who is a self-advocate. What needs to and can be done and by whom.

Notions, I feel, that will mean the most for and in the future of my daughter and others with Down syndrome.

I keep reminding myself of what James L. Cherney writes in his article The Rhetoric of Ableism in Disability Studies Quarterly regarding ableism as a fundamental way of viewing the world:

"...naming and calling into question the view itself raises the possibility of altering the very strands out of which the oppressive institutions are spun. Identifying the view as problematic adds a critical dimension to the struggle by denying the simplistic perspective that sees altering a few target structures as a solution to the problem. Naming the view exposes its pervasiveness, assumptions, and implications to criticism."

This to me says it's okay to not let all flowers bloom, especially not the flesh-eating kind. Not everyone's truth needs or should be out there. That sometimes 'turning on the community' is just healthy discussion that strengthens the movement and hurt feelings are just that.

I agree with William Peace on his blog Bad Cripple when he writes:

"To get disability requires time, energy, and restructuring all of what one was taught.  Many feelings are going to get hurt if we people with a disability are ever going to become equal and free of bigotry. People who have dedicated much time and effort to support people with a disability will be hurt. That is those that have worked hard within a charity model of disability will be offended by the civil rights approach.  Researchers who dedicate their careers to cures for a host of conditions will be hurt (people like those involved in the exoskeleton or stem cell treatments)."

I'm not a people pleaser. I use alienation like a weed whacker.

I've thought about who the reader of this blog is and what they are taking away from what I write. I've struggled with whether everything is personal and up for discussion or whether there needs to be a clearer direction that might confront other directions. I've tried to zero in on what needs to be challenged and questioned and who is in the position to do that. Who it is I'm shouting at and who is shouting with me?

I am and have been angry and outraged and I've been told that I'm unappealing because I swear or say divisive things, and then I've wondered whether those aren't the best things about this blog.

They've meant I've found others who will rather make a wave than stay afloat. Waves are called for today. There is no reason for advocacy to be good-natured or diplomatic. Why should I change how I do things and occupy my space in the world just because I am the parent of a child with a disability?

I have also struggled with the surprisingly-present in the Down syndrome parent community, notions of legitimacy, seniority, involvement, and perceived authority or expertise. And then there are the recent additions of transparency of motivations and personal goals. I find the latter hard to fit into my view of advocacy.

Most times I think: "Fuck it, I'll write what I want."

Most times I write because I'm pissed off. For my kid. For her.

What do I want to achieve with my advocacy and how? What will I emphasize in raising my child with Down syndrome. How will I address advocacy in our everyday? Will I need to and should I?

I want people to halt when they see inspirational porn and dismiss it as insulting. I want people to read an article about a doctor having 'suppressed' the third 21st chromosome in a petri dish and ask themselves what the implications are and whether this isn't a problematic development. I want people to look at my kid and never ever flinch or ask me what her condition is or whether she's able to do xyz. I want my kid to be able to create for herself the life she wants to without anyone setting limitations on her because of her diagnosis. I want her to be able to succeed and fail without neither being perceived as somehow related to the chromosome. I want to not feel the need to write a blog about Down syndrome because I feel pissed off at the media, society, history, strangers, institutions, parents, or other advocates.

I used to bitch about the narrowing width of airplane seats for chrissakes. Those were the days.

And the most important question of all:

Why don't I write more specifically about Babe? She is totes adorbs after all. It would create awareness. It would show people that "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," instead of me just saying it right there on the banner.

Because now, as an adult, I wouldn't want to read about my child self on the internet.

What's your take on advocacy? What about flowers, especially the flesh-eating kind? Should we be catching more flies with honey or is there a danger in imperfect alliances to further obscure the root cause of injustice? Want to discuss this over a bottle of wine?

What do you think?

About Grief

And how deep the Rhetoric of Ableism runs.

In my life I love. I laugh. I get angry. I get bored. I whine. I rejoice. I joke. I drink too much coffee and wine. I yell at my husband and at the computer for daring to behave differently after the latest software upgrade (the 'puter, not the husband). I dance and sing and eat burgers with gusto.

Sometimes I cry when someone's a total ass towards me and sometimes I fight back. Most times I hang out with my family and friends and just bathe in the happiness and joy.

I enjoy my life. I'm happy and content. I'm where I want and wanted to be. I enjoy my life.

Yesterday I read this article on Huffington Post about grief. It's a personal account and a parent's take on something that gets tossed around in the Down syndrome community a lot, namely 'grieving the child you thought you were going to have, to be able to enjoy the child you did get'. To me personally this exercise has always been pointless at best and incredibly insulting at worst. So I wanted to comment thusly:

"I am also a mother to a child with special needs and while I support you and understand you as a fellow parent and as a human being with a specific experience I also feel to need to bring to your attention that your experience is by no means a universal one. In fact, I often consider an experience such as yours, which is by no means invalid in any way, brought on by compliance to a rhetoric created for the mainstream, *only* for the mainstream. A rhetoric that never questions what it means to be human, what it means to have value and worth or have a valuable or a worthy life. What it means to be happy. Why we're so driven to attain a level of accomplishment, of development for our children. What is normal and how is it defined and where does the concept derive from? I know there is a whole world out there that does not define success by milestones or worth by 'closeness to normalcy'. There is love and diversity and a movement that allows for difference that doesn't define, but enhances. 

I feel we cannot change things for our loved ones (or for ourselves) unless we let go of what has been arbitrarily defined and create anew. Lets change the world for our children, not our children for the world.

Much love to you and yours."

I always feel compelled to say something when it seems like a major news outlet is picking up 'a story' I and many other advocates refer to as misery peddling, when the struggle they pick up on is not the struggle for equal rights, inclusion and acceptance, but the struggle of a caregiver to get over their shock and horror at a disability. This article in Huffington Post is by no means unique, it is the latest in a long, long line of articles discussing depression, jealousy, and even thoughts of suicide when facing one's child having a disability.

I guess misery sells. I guess overcoming something insurmountable (oh please) sells. I guess someone finally being able to love a kid who (gasp) has an intellectual disability is the stuff for inspiration and appreciation of one's own life. Who knows?

But the person who wrote the story responded:

"While I appreciate your perspective, I believe that the world you speak of and hope for is a utopia of sorts and unfortunately unrealistic in present day. Without milestones as a yardstick, parents would not know whether or not their children were falling behind in things like walking, talking, etc. Those milestones signal proper development and the lack thereof signals a need for assistance such as therapy. This is not to make these children "normal" for the sake of society, it is to allow them the opportunity to grow to reach their potential - whatever that may be. For example, if a child is not identified with a neurological or physical disability and then treated quickly enough, there is a possibility that they may not be able to walk. They would certainly have value and be considered worthy of life either way, but having the ability to walk (rather than be confined to a wheelchair or walker) would arguably bring them more opportunities and and general ease throughout their lives. I'm not sure it is fair to our children to ignore societal norms - regardless of how "arbitrary" we may think they are. Until we can change the perspective of everyone in the world, the best we can do is create realistic and hopeful expectations and a loving and supportive environment for our children and the people around them. J."

I nearly passed out.

Every once in a while there's something that just leaves me completely hopeless. Leaves me wondering why I keep doing what I'm doing when one of 'my' people - fellow parents, family members of people with disabilities, and self-advocates - with me at the barricades fighting for that better, more equal and accepting world, turns out to be fighting a completely different battle.

When they are not fighting for acceptance, but to accept.

It hurts when concepts such as 'proper development', 'treating a neurological or physical disability', being 'confined to a wheelchair' and 'societal norms' are touted as facts and something that should go unchallenged. That the only body and mind worth having and the only body and mind that will give 'opportunities' in life are the kind of body and mind that have no impairments.

The rhetoric of ableism goes unquestioned, and has become the baseline. It hurts.

My child is not a project. She's my child. I don't want to try to 'fix' her to measure up to some arbitrary yardstick or adhere to some societal norm that's really baggage in disguise. Instead of saying "How high?" I want to ask "why?"

The world is my project, even if I can't change it in my lifetime, at least I'm trying to make a difference, a change for the better for everyone in the future.

A Jerk with a Halo and Some Shabby Wings

(Should I throw in a clown nose while I'm at it? Purpose? Opposable thumbs? Scars or tattoos? Experience? A theme song like way back on Ally McBeal? Love? Some kneepads and a helmet? Resentment? Common sense? Or a winning smile?)

What are real people made of? What are stereotypes made of?

My favorite article ever written about a person with Down syndrome is titled 'People with Down syndrome can be jerks too.' To me this article and especially its title speak of great things. Although a personal story, the article offers to me a glimpse of a society that might just be able to see people with Down syndrome as individuals. As multifaceted, whole people who experience varied emotions, and whose actions are fueled by just as obscure, overt, honorable or selfish motives as yours or mine. People with agency.

Seems so simple yet it's not.

The article speaks to me of a potential for a complex inner life that is often incredulously denied people with intellectual disabilities.

Not a radical thought though, this complex inner life, thought processes, a reasoning beyond pure instincts, wants, and needs. Complex motives.

That stuff that makes you justify having a hamburger for lunch even though you'd sworn to yourself that same morning that you'd get a salad and start a new life, that makes you hate your job while you're thankful for your career, or kill a spider while carrying the ladybug safely outside. That stuff that allows you to pass that guy on the street who's waving around a sign asking for money for food without batting an eye and then pay $4 for a coffee you end up not drinking. That stuff that makes you fundraise for an animal shelter while wishing that your mother in law's driver's license will not get renewed so that she can't visit so often. That stuff that makes you hate someone you desperately love.

We can all be saints or jerks, towards ourselves and towards others, sometimes in the same moment. Sometimes we act on impulse, other times we carefully weigh our options. We make small decisions in everything we do that are guided by a complex mess of everything.

Life. We neurotypicals live it and more often than not aren't asked to explain ourselves, yet the general assumption doesn't seem to be that we acted on pure instinct, or based on some all-encompassing motivation. And even if we did, most times that specific instinct or motivation won't be seen as all we have or are, as our basic existence.

However, often, almost without anyone realizing, people with intellectual disabilities are dismissed as not having that complex mess and are flattened to a few basic emotions or motivations. People with Down syndrome are reduced to that one extra chromosome in ways that most of us never even think about. Little things. Insidious thoughts. Good intentions.

Closer to God in their innocence

The 21st is the chromosome of love

Not an evil bone in the body

Unable to tell a lie

Sweetness personified

Here to teach us what life is really about

If people with Down syndrome are not reduced to monsters as has been done in the past (hello Aristotle, you half-assed theoretician), then they're often reduced to special people, halo and angel-wings firmly attached.

Reduced nonetheless.

Subhuman or superhuman, both exist on the margins or outside of society. Only partially included or segregated and grouped together, perhaps excluded. Denied of an average, everyday, mundane existence, complex mess and all - the kind of existence many of us have and refer to as happiness. Disabled by society and its perceptions.

By a society whose rhetoric of ableism has become so ingrained into us, into our thinking, our worldview, our language, and our understanding, that even many of us advocates never pause to challenge or question it.

We don't lead in our thinking and rhetoric, we scramble to have those we advocate for lie in this bed we've made without wondering when the last time was anyone changed the sheets - and those sheets are in serious need of changing.