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.


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

Picking Rocks

"Ableism is so pervasive that it is difficult to identify until one begins to interrogate the governing assumptions of well-intentioned society. Within the space allowed by these rhetorical premises, ableism appears natural, necessary, and ultimately moral discrimination required for the normal functioning of civilization."

[A]bleism is that most insidious form of rhetoric that has become reified and so widely accepted as common sense that it denies its own rhetoricity—it "goes without saying." To fully address it we must name its presence, for cultural assumptions accepted uncritically adopt the mantle of "simple truth" and become extremely difficult to rebut. As the neologism "ableism" itself testifies, we need new words to reveal the places it resides and new language to describe how it feeds. Without doing so, ableist ways of thinking and interpreting will operate as the context for making sense of any acts challenging discrimination, which undermines their impact, reduces their symbolic potential, and can even transform them into superficial measures that give the appearance of change yet elide a recalcitrant ableist system..."

[Excerpts from  James. L. Cherney's "The Rhetoric of Ableism."]

 
I'm a mother and a nurse, not a scholar.  I'm not going to make any pretensions about that.   I'm also a half-assed gardener and occasionally, I take a pretty picture of something I've grown or of someone to whom I've given birth.  As a "writer" I am one voice in the wilderness of the blogosphere.  I came into this role woefully unprepared and in the process have discovered many things about Down syndrome, our world, our Western society and indeed, myself.  I started this place as a "Mommy blogger" and am slowly growing into a disability advocate.  I started out thinking that I could try to change a few minds and that would help create a world that was more receptive to people like Wyatt.  I wanted to help build a garden where old stereotypes did not linger in people's minds. A world where the phrase "my son has Down syndrome" would not automatically generate uncomfortable looks, apologies or awkward exclamations of sentimental rubbish.

Lately, I've been preoccupied with the subject of ableism and how it impacts my son.  Western culture is rife with it.  It is buried, deep within the rhetoric, deep within the language that we use to share our opinions to one another.  When it comes to the subject of advancement of people with intellectual disabilities such as Down syndrome, the tools that we advocates have chosen to use may appear to advance our goals of inclusion and acceptance. Sadly, those tools, in many cases, do the exact opposite.  How we view disability, how we see each other, how we as parent and friend advocates feel about the the world-at-large all impact our efforts. I've also realized that I shouldn't be planting anything for my son, but rather preparing the soil for him to sow a garden of his own.


It was those two quotes above that finally clarified what I had suspected for some time.  We are overgrown with ableist rhetoric, whether we mean to be or not, no matter how "good" our intentions. On the surface, the very words that we choose shape how others perceive us and how we see the world. The grand daddy of them all, the R word, is a perfect example of this.  However, the dialogue goes deeper than that.  Like rhizomes, negative concepts that shape our entire perception of disability are spread throughout our history, dating back to Aristotle.  As Cherney states, ideas such as "normal is natural", "disability is evil" and the "body is able" are rampant throughout the Western world.  Other rhetoric, including those that incorporate socioeconomic or religious ideals (such as "disability is uneducated", "disability is baseborn", "disability is ethnic") seem to sprout up everywhere.

These are all part of our great post-colonial tradition of "less than".  Our everyday language shows that we see others with disdain.  That able and functioning at optimum physical perfection is what we are all supposed to be and anything else is a failure;  lesser;  unworthy.  Even amongst "disabilities" there is a difference.  We in the Western world commonly refer to those that employ physical assistive devices such as wheelchairs and support animals as "differently abled".  Those that have cognitive impairments however are "developmentally disabled".

As I've mentioned, I come from a medical background.  For years, I embraced a more mechanical definition of disability, which in its most basic form states "this part isn't working as it should, therefore the patient is disabled". The person is seen as broken, malfunctioning, stunted.  This quickly leads to pity disguised as empathy.  Then to romanticism, as an artistic touch is now given to what is "broken".  A more realistic viewpoint is the social model; this way, disability is described by a series of barriers, exclusions and negative attitudes (that includes language).  An individual may have a physical, cognitive or psychological difference from their neighbours, but it is the lack of societal provision that makes it an actual disability.  Humanity is diverse and flourishing;  it is only when a person runs into a situation where their needs are not met, can they be defined as actually having a disability.  Most can easily relate this model to well known things, such as ramps or closed-captioning. However, when it comes to DS and challenges of communication and interpretation, as a culture we cannot seem to move beyond the medical model.  No one seems to want to say that it is society that has disabled these individuals, not their neurological makeup.  Even within the whole of the disability community itself, those with Down syndrome and related developmental disorders are considered less than.

From the medical tradition you also get the -isms:  Infantilism, where those with DS are seen as adult babies,  "Baby Huey", or 'forever children'.  It is probably the most insidious, as it strips all dignity and sense of self and worth from the individual.  They are forever dependent, in the most basic sense.  There is also Anthropomorphism, where those with Down syndrome are referred to in supernatural or angelic terms or possessing traits that are more like "powers".   Quite possibly the most sneaky of them all (and one that I am guilty of as well) is Paternalism, where all decisions, beyond a point where they should be made by the person themselves, are removed and placed in the hands of those who are deemed--by the same abilist society--as being more qualified, be they parent, school, doctor or organization.   This model often decides "what is best" and assumes as Cherney states, that "it goes without saying", based on old, outdated practices and ideas.  For example, we are told that those with DS do not follow "typical" patterns of growth or development and that these ideals should not be applied.  Yet, we still continue to apply them with the attitude of "how else will we know whether the child is behind?",  instead of just allowing the child to develop at their own pace in a loving, supportive, caring environment.  IQ tests are culturally biased and archaic, yet we still continue to use them to determine 'level of cognition' and therefore predetermine a person's 'functionality' and thereby, worth.  Our organizations, both religious and philanthropic, readily fall into this trap too, as they betray their roots as the charities that they were originally founded as, to help "the poor unfortunates".   Regardless of the origin, regardless of some degree of "good work" having been performed, regardless of intent, the result is the same:  an abilist act grown of an abilist system.  Each and every time it is employed, it undermines those with Down syndrome.  It hampers efforts to become more visible, for those with DS to move out of the world of poverty and neglect.

Not surprisingly most of the Down syndrome advocacy movement is borne of this ableist system, myself included.  We allow the rhetoric to continue by ignoring demeaning language such as the R-word,  by describing our loved ones in childish terms, by giving them "angelic" or "superhuman" qualities, by romanticizing the medical definition of disability and by continuing to make all decisions for them.  We, the people that are supposed to be helping, are only perpetuating stereotypes.  Pictures of good looking kids with catchy sayings may sound like a good idea (and I won't deny that there was a certain purpose served by this initially), but they are not.  My son's extra chromosome is not kitsch, it is not property, it is not made of love.  He is not an angel and he himself is not perfection incarnate.  I did not design him either, nor do I believe a supreme being handcrafted him for our family... I only had the pleasure of providing half of his genetic material.

I've run into a lot of nationalism too.  Recently I read a Letterman-style "Top 10" list of reasons why one particular country was the best in which to raise a child with complex needs.  The article will no doubt be shared far and wide within the advocacy communities and it saddens me, as the article itself is so rife with inconsistencies, poorly researched half-truths and flat out falsehoods that it actually turned my stomach to read it.  Blogging communities seem to be often divided among these national lines as well.  There also seems to be some kind of hierarchy in the advocacy world;  the more disabled your child/loved one/you are, coupled with the amount of "time served" you have in this community, the more of an "expert" you are. Assuming there is such a thing in the first place. Politics within the movement itself are rapidly threatening its very life;  I don't know whether to laugh or cry when I see those calling for inclusion acting very negatively and exclusive in their practise. 

But what about the world outside?  Much of what gets published about Down syndrome or special needs in the mainstream these days might as well be misery peddling. Subjects that go well beyond simple anticipatory grieving seem to be de rigueur and are now perpetuating the negative stereotypes that we are fighting so hard against. Initially, I'm sure this trend was meant to be a way for parents to find fellowship in what can be some very long and seemingly isolating days.  But, how much negativity can one person read surrounding a certain condition before they start applying those traits to that condition?  In our sensationalist world, unless a piece about disability keeps things at status quo (ie: 'less than'), it is not publishable.  Full of anger towards your child's diagnosis?  Blame your child's diagnosis for your own personal issues?  STOP THE PRESSES!  Depression, disgust,  having to "force" one's self to play with one's own child... these are are all things that go well beyond the realm of a grief reaction or situational crisis and in the end only feed our detractors and probably belongs in a therapist's office.  In the end, which is worse?  Our own community disparaging those that they claim to represent, or those outside that hate our kids? 

Then there is the stereotypical "Down syndrome superstar", who by having a prom date or scoring a goal or participating in a major life event, allows all to feel misty, paternal feelings.  Add a little more anthropomorphism, in the guise of "angels" and "my child has made me a better person" and you have the  domain of inspiraporn, which is just more ableist rhetoric.  The reality is that not every child will be a superstar and the effects of the extra chromosome will vary from child to child, as well as the resources and supports made available to them.  I'm personally guilty of this one, not realizing that the reason I felt the way I did when Wyatt was diagnosed with his AVSD (and probable chromosomal disorder) in utero, was the ableist society in which I lived.  If my culture had not continued to push the idea of the "hardship" or the "broken child", would I have been as sad as I was initially with his diagnosis?  Would I have grasped blindly for for the first sign of positivity,  the first glimmer of "hope" in the form of staged photo-ops and over the top inspirational motifs?  Let me put it another way:  if one truly accepts people with intellectual disabilities and developmental delays as equals, these stories would not be news.  However, many cling to them desperately, willing to overlook the weeds of ableism and instead renaming it a wildflower of "awareness".

"Bucket of Rocks" shared with
permission from Chiotsrun.com

What this civil rights movement needs is more visibility.  Not from parents or people like me, but from the self-advocates themselves.  That is why I share almost everything from VATTA blog on our Facebook page.  It is the people with Down syndrome who need to create the language that describes them, it will be the self-advocates that create the new rhetoric to promote neurodiversity.  It is happening.  Slowly, seeds are germinating.

As one of my children has Down syndrome, I've had to evaluate my perceptions of disability over and over.  How will this affect Wyatt?  How can we, as his parents, best guide him to adulthood and allow him the freedom to advocate on his own behalf, whatever form that may take?  To reach "his full potential" on his own terms, not our abilist ones? At what point do I stop "parenting" and become "paternalistic"?  For now, I guess, my job is to continue to expose the rhetoric and ableism while nurturing the creation of a new construct, a new set of definitions that not only include neurodiversity but were created within that community.  Despite how disheartening all this can be sometimes, despite how physically and emotionally exhausting it is, I will continue to prepare the soil of this revolution.  My family will continue to explore the world of Intellectual Disability and Developmental Delay the only way we can, through the eyes of others, including our son.  I must persist with preparing this earth for my kids as they grow.  I know, one day, my son will communicate "It's ok, Mom... I've got this" and I will happily put down my bucket and drink a Mojito in the shade.  Until that time however, there is much work to be done.  All are welcome to offer a little sweat equity;  there is a lot of weeds to clear, soil to turn and rocks to pick...

"Picking Rocks.." shared with permission from Chiotsrun.com

---------------------------

Cherney, James L. "The Rhetoric of Ableism." Disability Studies Quarterly 31.3 (2011):  The Rhetoric of Ableism | Cherney | Disability Studies Quarterly. The Society for Disability Studies. Web. 03 July 2013. 

[Originally appeared on Down Wit Dat]  

Don't be a Dick*

Being a bit of a geek, it shouldn't be surprising that I adhere to Wheaton's Law.  For those that aren't familiar with this little bit of memedom, Wil Wheaton (of Star Trek: TNG fame) in his keynote speech at the Penny Arcade Expo (PAX) in 2007, stressed the importance of sportsmanship, in this case referring to online gaming.  It culminated into one phrase: "don't be a dick".  Not surprisingly, this little idiom has taken on a life of it's own;  Wil's Birthday, July 29, is now "Don't be a Dick Day".  It's premise is pretty simple;  don't be a dick.  In the last little while, quite a few things have come across my path that have me saying "what a dick!" and wishing that people would start applying Wheaton's Law to and in the disability community.

Wheaton's Law.  There are shirts.

For example, service animals are becoming more common and being used for many different things these days.  However, you would be surprised at the amount of discrimination that still occurs.  This story happened a few years ago in Toronto, where a medal winning athlete was denied entry into a gas station due to her seeing-eye dog.   Not all service dogs are German Shepherds or Labrador retrievers or even seeing-eye dogs for that matter;  my friend M. has a service dog, a darling pile of fluff named Edgar.  He is a miniature Yorkshire terrier and helps her with her symptoms of Post Traumatic Stress Disorder.  Edgar is fully certified and although he doesn't wear a vest (he is too small), M. carries all his certification with her everywhere that they go.

The other day, she went into a nail salon/spa that she had frequented for years.  While lying quietly on a table for a facial treatment, she was accosted by a very hostile and threatening woman.  The woman bent down to speak to M. face to face and loudly objected to Edgar's presence stating that he "would get the place shut down by the health department".  My friend, once she had regained her composure (and been able to stave off symptoms, thanks to Edgar's intervention), attempted to explain her service dog's role to the woman, even going so far as to pull out his documentation. M attempted to show his certification again a few minutes later and was greeted with more ignorance, conversation bordering on verbal abuse and most sad of all, silence from the shop's owners.

My friend will never go there again.  What was once a place of peace, comfort and happy memories for her and her daughters is no longer "safe" (for her or Edgar).  It pains me to hear this as this is not the first time that this has happened to her.  This year even.  M. has been humiliated by people demanding to know her reason for her PTSD and what service Edgar could possibly provide.  My friend is not about to discuss the horrific physical, mental and sexual abuse that she endured at the hands of her own parents, especially to complete strangers. Yet, people feel they have the right to ask this of her, despite the documentation.

So, when it comes to service animals, don't be a dick.  Not every service animal is a large dog or even a dog, for that matter (I have seen pot bellied pigs and small horses as well).  You do not have the right to demand an explanation other than the animal's certification.  You also don't get to pass judgement on what you believe is a proper application of such an animal.  Not every disability is visible as well;  what may not be apparent to you may be quite debilitating to another.

I don't consider myself to be a "mommy blogger" (although I do know quite a few successful ones).  I'm not confident enough to consider myself a writer, so I tend to refer to myself as just a blogger.  Before the twins, I was was happy to prattle on about my garden and random things that popped up in my life [read:  a forum to entertain my family and friends and show my photography]. That changed with Wyatt's prenatal diagnosis and the writing that came out of that which would eventually became Down Wit Dat.  As I found out new things, I shared them with my family and friends.  That group has grown over time;  I've never claimed to be an expert.  I'm just another advocate (and not a "mommy advocate" either).

In my travels, I talk to a lot of other bloggers.  Some are very successful, some are commercial and do this for money or promotion, some blog for advocacy and some just do it for a love of writing.  There's a degree of camaraderie, sure, but at least in the "disability communities", there is a lot of animosity as well.  We all have a voice, we all have struggles.  We all have learning needs and different personalities and let's face it, I for one am not everyone's cup of tea.  However, there's this trend to discourage and disparage "younger" (less experienced, with younger aged children) bloggers and advocates and it's kinda disturbing.  I'm hearing "too angry" and "too young" and "too inexperienced" and "too disrespectful" and a whole other bunch of wacky stuff.  I can't speak for anyone other than myself, but "too angry"  is not exactly what is happening over here at the Logan Homestead.  Even when I'm being particularly passionate about something, I'm hardly angry to the point of uncontrollably shaking my fist to the sky (I have been accused of that one, actually). I don't have the energy for that level of unbridled emotion, frankly.

Besides, I'm Canadian.  We don't do a lot of that here.  We're more apt to write a polite letter to our riding's Member of Parliament, to ask them to consider submitting a well thought out and sober article of legislation.  When it comes to the blogosphere, we all have something to offer, even if we all don't agree.  I for one, want to hear the experiences of those that have gone before.  I want to hear what went right and what went wrong.  Not so that I can tell you that I think you did things incorrectly, but so that I can learn from it and make my son's experience better (and improve it even more for the kids that come after him). 

So, bloggers ("Mommy" or otherwise), don't be dicks.  Personal struggle is not a contest.  No one wins in the end for time served. There is no "rank", this is not the military.  I may not know exactly what year 15 looks like with a child with DS, but I do know what I want it to look like.  You probably don't know what it is like with twins where only one of them has DS, either... just as I don't know what it is like to be an adoptive parent or a same-sex parent or any other kind of parent other than myself.  We're all trying to make a world that accepts those that are different than most as a matter of course.  When we waste our energy on each other needlessly, we just look like, well, a bunch of dicks.

My last stop on this "Don't be a dick" train is person first language.  I'm a big believer in PFL and have been since I encountered it in 1995 in one of my nursing classes.  It's not rocket science:  people are more than their conditions.  Mr Smith may have schizophrenia but he is more than simply "a schizophrenic".  Such reference is dehumanizing.  Calling my son a "Downs" or "Downy" or any other permutation, other than "he has Down syndrome" is dehumanizing.  

The exception to this lies with the self advocate.  Through the words of a few bloggers in the autism community that I respect greatly, I have gained an understanding into the continued use of "autistic" as opposed to "person with autism".  As it was explained to me, by a person who is autistic, it wires a person different;  to remove the processing disorder would remove a great part of the self.  Although I would like to disagree in theory, I respect their opinion.  Those possessing the characteristics in question get to determine the language used to describe those characteristics.

Comparing Down syndrome to ASD is like comparing apples and pelicans anyway. 

The current consensus of the self advocates in the Down syndrome community is to use person first language and it is to that I will defer.  So please, don't be a dick.  Down syndrome is not an adjective.  The words you choose to describe people shape the perceptions of those around you.  We cannot create a world where differences are accepted and even celebrated if we denigrate people through the words we use to describe them.  It's not a matter of your "rights" to "free speech", it's a matter of recognizing another's humanity.

So there you have it.  When it comes to the world of "disability", invoke Wheaton's Law.  Don't be a dick.  Make every day "don't be a dick day".

Speaking as a someone who loves someone with a learning disorder, we already have enough of that to deal with.

------
*Unless your name is Richard.

[Originally appeared on Down Wit Dat]  

Potential, Disability, and Human Worth

So what is potential?  Is it a bottle that we fill, predestined to be a certain size at birth?  Is it a balloon that stretches and deflates according to our circumstances?  What, specifically, are we discussing here?  Potential for what?  Happiness?  Wealth?  Influence?  Raw ability?  What kind of ability?

I hear a lot of talk about potential.  I want my baby to develop to his full potential.  One of the reasons I was anxious about LP’s sleep apnea and his thyroid was that both conditions, left untreated, carry the very real possibility of causing permanent brain damage.  I’ll be honest here and admit that one of the hardest parts about hearing the words Down syndrome was the idea of my child having an intellectual disability.  So the idea of him having somehow more intellectual disability due to untreated health conditions freaked me out.  The future, his potential, loomed out in front of me, constricting, because I worried that he was losing something he could have had.  Lost potential.

I was wrong.

We live in an ableist world that defines potential against arbitrary values that change over time and context.  A person in a wheelchair is only disabled because the majority of the world uses two legs to get around.  A person who is intellectually disabled is only disabled because the majority of our society values certain cognitive skills and learning styles over others.  A person who is blind is only disabled because the majority of society relies heavily on their sight.  What modern day societies view as important is how we create our society.  Our roads, schools, buildings, are all created with this in mind.

Judging another human’s potential through the lens of their disability is not only a futile exercise, but it creates a hierarchy of worth.

It is dangerous.

This is why new prenatal tests are a vehicle for eugenics, under the guise of medical care.  This is why Ethan Saylor’s death was so tragically uncontroversial.  He was judged as already so limited in his potential due to his genetic makeup that his death was worth less scrutiny than another’s.  This is why parents fight to get their children included in the public school system; children with disabilities are seen as having less potential, less worth, just less.  Adults struggle against an employment system that believes their work is worth less than that of their non-disabled counterparts.

If most of us had one arm and were not neurologically wired to do math, the world would have developed to favor those characteristics.  Disability and a person’s potential are defined by the world’s ability to interact meaningfully with them, and not the other way around.  Potential is simply a mirror, reflecting the world’s biases, but having nothing to do with an individual himself.

So let’s stop drawing lines.  We are all disabled, we are all abled.  We are all different, we are all typical.  Let’s include each life into the web our collective potential, simply because we value human life.  No one is born with a smaller bottle or balloon.  Potential is potential, simply by living, no matter how we are born or how our life’s events unfold.  We are all infinite by our very existence.

Normal

It's been well over a month since Wyatt's surgery.  I am starting to feel like myself again only now, after two sun-filled weekends at home.  According to the experts, this is a 'normal' reaction after an extended period of stress, after a perceived threat (in this case, to a loved one).  Despite my profession, I have to keep reminding myself that a low period after a time of intense stress is to be expected.   It's a natural reaction, especially when you consider that my [often precarious] work-life balance was tipped dramatically in one direction then quickly pushed back again. After the surgery, I was going along at a pretty good pace too, or so I thought... until I found myself in an empty room, unsure what to do, straining to hear anything over the silence and my own breathing.  The sudden absence of a presence, one that had haunted us for over two years, left a void that I had to fill.  Over time I did that.  I've made it my own.  After spending time with my family, after spending time in the garden, I feel better.  I feel more like myself; our family life has cautiously settled back into its own rhythm.  Wyatt's progress has been a big part of that:  his rapid healing, his adaptation, his overcoming of things like sore muscles and wired ribs that feel weird has helped us all maintain some clarity as we assume our 'new normal'.  Our post surgical normal.  Our brave new world.

The idea of "normal" seems to have became a theme in the time since my last post.  I swear, I'm running across examples and discussions about this all over the place.  This concept of normal vs broken seems to be a real thing in the DS community (if you can even call it a community any more).  When you think about it, it's no wonder really; after thousands of years of looking at those with Down syndrome and those with intellectual disabilities as "less than" or "broken", modern society is struggling to give these ideas up.  These concepts are familiar and comforting, like an old blanket.  However, it is time to evolve and "put away childish things", as it were.  People with intellectual disabilities are here, have value and worth.  Different.  Equal.  Not separate.

I will agree that the extra chromosome gives a lot of unknowns, a lot of variables.  My first, "typical" child was a "What to Expect..." baby.  Every month there would be a new list of goals, of things he "should be" doing, things he "might be" doing and things that would be coming up soon. Spoiler:  he didn't follow the lists.  Quinn was barely starting to walk at 18 months, but had the vocabulary of a child much older.  He didn't play with toys conventionally either, preferring to figure out how they worked and then make some kind of art statement out of them.  

What we've realized with Wyatt is that development is non-linear.  It is fluid.  He does not progress along a predictable path towards a readily recognizable outcome.  It may take him months to finally realize that tapping his spread palm to his chin means "mother", but in a short period of time can polish off a few skills that took his typical siblings months to reconcile. Instead of sitting still while he recovered from open heart surgery as he could no longer crawl, he instead adapted and learned to "scoot'.  Holy cow is that kid fast.

Even amongst children with DS, there are no set rules.  Not so long ago, pediatricians everywhere adopted a series of Down syndrome growth charts, which for chart/graph minded people like pediatricians, seemed to be a good thing.  It helped everyone to get over the idea that kids with DS were "poorly" due to their (generally) smaller stature when compared to their more typical peers.  These charts are now falling by the way side as not every kid, especially the ones with DS, adheres to a regular growth pattern.  None of my kids have, that's for sure.  Growth charts are a touchy subject with me anyway as I am the Mom of two preemies.  I've found myself shifting from foot to foot with irritation at a number of appointments, as I watch my two obviously thriving children not "measuring up" to what some chart has to say about "healthy growth".

Wyatt, even with his (previously) busted heart, is not broken or deficient.  He does look slightly different than other children I guess.  Most people that see him or his pictures want to nibble him, so I can only assume that he's a pretty good looking kid (which, as his mother I suspected all along).  None of my three look exactly the same...  Quinn is currently in a bag-of-antlers stage, with stunning blue eyes that make you want to fall in and drown. He's also in that stage where some of his teeth are loose, some are sticking out at odd angles and the new ones look like they belong to a horse.  Zoe has my olive complexion.  She has straight hair--which is a sharp contrast to both her brothers and their blonde curls--and soft brown eyes that can go from molten chocolate to granite in seconds. She can also do bridged lateral push ups between the couch and the coffee table.  Genetics are a wonderful thing.  However, due to some physiological differences, Wyatt is considered to have a "visual disability".  It is "visual", as you can see it and therefore--if you talk to a large (ignorant) percentage of the population--get to pass judgement instantly on his abilities by just looking at him.  A casual glance at his twin would not reveal that she has a lisp or delays in her speech or hand tremors that often occur with prematurity.  However, Wyatt, due to the shape of his eyes and his button nose, perhaps the way he holds his mouth or curls his toes, is immediately "recognizable".

There are no delusions about the future.  Wyatt may develop some behavioral problems, that is true.  Having been in Mental Health for years, the place where people with "outbursts" of all shapes and sizes end up, I've had my fair share of experience in this area.  I also know how many of these come about and how easily many instances can be both exacerbated or prevented.  He may not face this, either.  He may speak 'clearly' by conventional standards, or not.  Perhaps he will not speak at all.  Regardless, he will be able to communicate his wants, needs and desires quite well.  You will need to possess the willingness to listen.  It doesn't take much really, other than an attention span and patience that lasts more than a beat or two.  I also won't know until they are grown up whether any of them will have schizophrenia (as I have two cousins with this), will suffer from depression, have diabetes or cancer.  There are variables with all my kids, just like your genetic code will dictate whether your kids will develop the issues that occur in your family. 

I guess, in my mind, that's what really set the "This is Down syndrome" list of illnesses and disorders away for good.  Yes, my kid does go to a lot of doctors.  So do I, when you think about it... and I consider myself to be a reasonably healthy person.  To put it another way, here is a list of things that can "go wrong" if you happen to have Trisomy 21.  Here's a list of things that can "go wrong" if you are human:

It's a big list...

Homo sapiens are a diverse bunch, full of colours, shapes, sizes and bodies that ultimately break down, no matter how much we exercise or how organic our produce is.  Or how many chromosomes we may or may not have.  We are all broken, if that is the criteria you use to determine worth.

I think the sooner that we as a species, realize that all of us have equal value, the sooner we will stop hearing stories like this one, where a hotel in Spain refused to allow children with Down syndrome as they would be "disruptive".  We'll stop perpetuating myths that our kids with intellectual disabilities have an unholy attraction to water or wandering;  kids without DS can drown and bolt without warning just as easily.  I know this, I was that kid.  I would routinely wander off, especially in public.  My mother can tell you many stories about how I would hide in clothing racks or just get lost, period.  My mini-me daughter is shaping up to be the same too, which is going to mean a lot more grey hair in the future (assuming it doesn't just give up and fall out).  Everybody wanders and gets confused by their surroundings from time to time.  If you don't believe me, watch a security camera in a hospital for a length of time.  Trust me, I've seen some things...

Normal, as they say, is simply a setting on the washing machine.  When it comes to people, there really is no such thing.  We're all bags of quirks and "illness" and here for a very limited time.  That includes our members with developmental delays and intellectual disabilities.  There is no "less than".  There is no broken.

There is life:  messy, glorious and mostly mercurial.

[Originally appeared on Down Wit Dat]  

Down syndrome, Social Stigma and Images of Exclusion

(By Kieron Smith, author of The Politics of Down Syndrome)

Mostly I think people are afraid.

Society has become obsessed with image, consumption and superficiality. Politics appears to be going the same way.

Things have improved for people with Down syndrome since it was first identified 147 years ago, but not as much as they should have. Now we have institutions without walls, where people with DS are excluded from work, integrated education, plus suffer from second class health care and screened out by public health policies.

Society is obsessed with risk, with feeling powerless – Down syndrome is presented as a risk so serious that an national screening programme is required– you get assessed for 'risk' during pregnancy, not chance. Stigma does the rest, images from institutions and from TV series that bang on about difference. The idea of Down syndrome creates a cascade of potential risks and fear of the unknown, stigma.

The danger is that we respond to this scared and superficial environment with piecemeal and superficial solutions.

Visibility of people with DS on billboards, in exhibitions, catalogues and TV ads is all well and good but if people don’t interact, without real inclusion, then these images almost emphasise their own unreality.

In the real world people with learning disability are still excluded - they don’t get to be part of the picture.

The Gulf war was referred to it as a virtual war, so stylised and selective were the images we were exposed to.

So, there is image and there is power.

The images, the oft quoted awareness that people with DS exist, might nag at a few charitable consciences but serve to change little. If anything, because of the distance in everyday life between people with DS and society – then images of difference, in isolation, could actually play to a fear of difference, the other and the unknown.

The point is to change it.

Change will come when the fear is overcome and the stigma dispelled – when people are engaged with people who have DS. Not sharing an ‘endeavour of learning’ somewhere in a different unit – but in the same class, not excluded entirely from the workplace – but working together, not screened out by default.

We need people to speak up, we need self-advocates, we need like many liberation movements before to stand up and demand an end to stigma and we need to demand inclusion at every level of society, and to have big ambitions.

Differences are not deficits – a diverse society is a richer one, at its core the message should be that people with DS are more alike than different – like most groups who have been subject to stigmatisation. But we're going to need to shout louder to get heard.

Today is World Down Syndrome Day and we are blogging about acceptance, inclusion and activism. Join our Blog Symposium!

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Natural

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

Disability is natural.

Down syndrome is natural.

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

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

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

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

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

We need to take action.

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

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

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

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

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

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

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

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

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

And the question of who counts as human.