Monday, October 28, 2013


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

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

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

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

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

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

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

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

I think folks need a reminder of what hate looks like.  This was posted to my Google community a few weeks ago:
[Image: caricature of an adult male with Down syndrome.  The caption reads
"Congratulations, your kid has Down Syndrome!"  The word balloon
from the man reads "I can count to potato".]

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

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

Asking why?  That is not hate. 

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

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

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

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

Saturday, October 26, 2013

The Sum of One

[This was originally posted on Shaping Clay, October 21, 2013.  Michael Scott Monje Jr. was kind enough to run it for DS Awareness month.  I would like to thank him again for the oppourtunity.--J]

I am an ally.
I am a nurse.
I am a parent.  

It may sound a little odd starting out like this, but these are parts of who I am.  Much like being Canadian or 5'10". These are my biases.  I am not, as of this writing, considered to have a disability.  I do have a child that does.

One of my twins, my middle child and second son, has Down syndrome.

October is Down Syndrome Awareness Month in the United States and I'm stepping up.  Not to spread awareness, with it's shiny merchandising and kitschy T-shirts, but to advocate.

Hard, as I'm fond of saying.

Although Down syndrome (singular tense) is the most common genetic variant, only one in 800 or so people will be born with it.  That's not a lot of people, statistically.

Down syndrome is highly medicalized, highly stigmatized and regarded most commonly as a collection of characteristics and conditions that can be boiled down to the existence of an extra chromosome,  specifically a triplication of the 21st (hence the term Trisomy 21).  This can be found in all of the body's cells or some of them, depending on the type.  It is considered a visual disability as most people with DS have some of the same facial and body characteristics.   It's considered a learning disability and a developmental delay as those with DS develop memory slower and differently than those without.  In the early years, especially viewed in a medical context, it is treated like a physical disability due to slower physical development and conditions such as hypotonia.  Every person with Down syndrome is as varied as everyone else, both physically and mentally.  People with DS (the descriptive chosen by self-advocates) are the product of their upbringing, religion, culture and socioeconomic status as much as any other member of society.

My son and his typically developing sister will be three in February.  At this moment, she is doing what any able girl-child at two is doing:  walking, talking, getting into mischief.  Her brother is no less mischievous, yet he is currently learning to stand independently and is hesitatingly taking his first steps around furniture.  Although we have no problem communicating, in developmental language terms he has a handful of confirmed words and signs.  Who he is and what he is capable of varies greatly, depending on who you talk to.  To many, he is considered to be severely disabled.  In some circles, he is "low functioning".  In our family's world he's a toddler.  Cut the kid some slack--not because he has DS--but because he just had a giant-assed hole in his heart patched up in April.  He's also a boy, who even in the able world, statistically develop slower than girls.

With all this medicalizing, stigmatizing and physical recognition of Down syndrome, there is a lot of hatred and misinformation floating around that dates back to antiquity, when DS was still referred with such terms as "feeble-mindedness", "Mongolian idiocy" and "retardation".  Care is still regarded as something for the person, not with the person, and can range from paternalistic at best to controlling at worst.  As a result, the current care plan for a new baby is to throw whatever "therapy" is applicable at a given time and see what sticks.  Sometimes this includes intensive physical, occupational and speech therapies coupled with a variety of herbal supplements... and even things such as antidepressants in order to meet developmental milestones.  Others include a more child-centred approach, based on play with frequent evaluations by PT, OT and ST.  This is the mode we use as it is in-house and more adaptable to our lives, our needs as a family and our parenting approach.  Some parents refuse all therapies for their children and are met with a great deal of resistance as a child "maximizing his or her potential" is seen as imperative.  The reality is, the developmental milestones that would apply to a 'typical' child should be thrown right out the window and the child allowed to develop at their own pace with gentle guidance, not force.  The cognitive and physical delays vary greatly from person to person.  As it stands right now, meaningful inclusion is the single best approach for all children.

Stereotypes abound with Down syndrome, some of which have a miniscule nugget of truth in them.  Many continue to be perpetuated by parents, professionals and lay people.  People with DS are often depicted as extraordinarily loving and caring and having high levels of empathy.   In reality, as visual learners, reading faces and mimicry are survival and communication skills that are learned early on.  "Super strong", "all look the same", bolting, not liking clothes, preternatural attraction to bodies of water are all "things" in the world of DS.  The person with DS who graduates college and encounters the same major life events as you or I (such as falling in love, getting married, getting a job)  is still considered an abnormality and to the general public, people like my son are uniformly ridiculed and considered akin to vegetables.  Hence the "potato" memes you will find everywhere on the internet. 

Unlike other intellectual disabilities, there is a prenatal test for chromosomal related conditions such as Down syndrome.  It is roughly estimated that somewhere between 60 and 90% of Down syndrome pregnancies are terminated, a sobering statistic regardless of your views on abortion.  Access to healthcare remains spotty globally and those of us in the western world do not always get to take credit for the "best way" to "treat" those with Down syndrome.  Many would love to see a cure.  Many feel that elimination is a cure.

Self-Advocacy in the DS world is still in its infancy.  On one hand, we have such programs as Voices at the Table (VATTA), an adults living with Down syndrome committee sponsored by the Canadian Down syndrome Society.  On the other, we have numerous Facebook pages which claim to be run by people with DS, yet are instead written by their parents.  By many organizations, everyone with DS is considered a self advocate, which is about right, yet this includes imagery of children who are nowhere near the age where they can consent to such things.  A person is considered to be advocating by buying groceries, by simply being.  I'm not advocating for women for simply breathing, yet as a feminist, it shapes my perceptions and I advocate by calling out prejudice.  Newspapers print stories of teenagers with Down syndrome who get to go to the prom with neurotypical peers.  They use phrases such as "overcoming" and "despite" in relation to DS.

To combat the ignorance and hatred, some of the parent advocate community push back heavily with 'positivity', often in the form of inspiration porn imagery, pedestal ableism and sadly more 'othering'. Down syndrome is marketed, made more palatable and easier to digest for the general public (in the hopes that creating an overall positive, homogeneous space will change people's views).   Although large quantities of positive images, memes and videos may seem to be a good thing, they often spring from many of the stereotypes about DS in the first place (such as always smiling, always happy, placid children), and in the long run end up to be detrimental and promote partial visability

Ethan Saylor has been gone for almost a year now.  No one expected him to say no, to stand his ground and try and argue his case, to advocate for his own rights like so many of us do on a daily basis.  For this, he died face down in a movie theater, his larynx crushed by off-duty police officers.  He is not the first person to be completely underestimated and misunderstood by the public or pay the ultimate price for having Down syndrome.  He probably won't be the last, either.

Adults with Down syndrome are still routinely infantailized, spoken of in inappropriate childish terms and treated like "forever children".  It wasn't until the 1980's that the routine institutionalization of those with DS ended;  young people are still routinely housed in nursing homes that are not properly equipped or trained.  In the disability world, independence is often gauged by what you can do on your own instead of being allowed to make your own decisions.  Adults with DS are often prejudged as being incapable of this as well.   From our child's birth, we parents are taught that we are grieving "the loss of the perfect baby".  I won't deny that there is often a degree of shock or surprise in such a diagnosis.  I also won't disagree with the fact that everyone, depending especially on experience and how they feel about the intellectually disabled, will react differently.  I will argue however that there are a lot of reasons why those early days are perceived as difficult, not the least of which is a high probability for a stay in the NICU, where a significant number of all parents develop symptoms of Acute Stress Disorder and Post-Traumatic Stress Disorder.   Worry, lack of sleep, micro-sleeping, feeding concerns, recovery from birth/surgery, multiple births... these things all contribute to one's state of mind.  Yet, within the first critical hours, we are taught to love the baby and dislike the chromosome.  It's no wonder that so many parents remain conflicted about their children well into adulthood.  It's hard to step over the threshold into acceptance when you hate the syndrome in the first place. You would be surprised at how many sources I hear this from.  Often the same people who share the megawatt-smiling imagery.

In all honesty, I have no idea what the future is going to look like.  I don't know if my son will speak aloud.  I don't know what he will be able to do independently and what "behaviours" we will encounter.  I don't know this for my other two children either, frankly.  What I do know is that regardless of any of this, he will be my son, respected and loved as a whole person, just like his sibs.  Many would like to contend that Trisomy 21 "does not define my child".  I don't agree or disagree with this statement, because either way, it is the wrong way to approach this diagnosis in the first place.  As my son is still a child, I get to select his clothes for a little while longer.  I may get to pick what he eats for the next couple of years.  I may decide what therapies he does or does not receive or where he does not go, at least for just over the next decade.  However,  I don't get to determine how he defines himself or what characteristics about himself he finds to be more important.  That will be up to him.  Its his right to show us what parts, what privileges and intersectionality he wishes to emphasize of his humanness.  In a world that sees everything he does and everything he will ever do through a easily-identifiable Down syndrome filter, the one thing I will assert is his humanity.  That I will most definitely do, and will continue to do so until he tells me he can take it from here.

There is no quick and easy summation of Down syndrome. It is not a list of symptoms, diseases or statistics.  It is not a chromosome.  It is a microscopic part of a person, with likes, dislikes, a sexual identity, race, creed, colour, nation... whathaveyou.  There is only a person at the end.  A sum of one. 

That's the only kind of awareness we really need.

Monday, October 21, 2013

Welcome (Back) to the T-21 Blog Hop!

[Video:  Opening credits and theme song from "Welcome Back Kotter"]

Somewhere around December of last year I shelved the T-21 Blog Hop.  I did this partially out of lack of interest and partially out of the time involved each month. 

However, after much deliberation [read:  drank some wine and thought eh, why not?], it's back bay-bee! 

(For instructions and more information, click this link)

As it is Down syndrome Awareness Acceptance Month in the United States, I thought I would roll this one out with a theme.  Not surprisingly, I have chosen Acceptance.

What is acceptance to you?  What do disability advocates have to do to get there?  What does society have to do to get there?  How do things like ableism, inclusion, activism, education, and intersectionality fit in?  How does all of this relate to you in particular? 

We will also continue to welcome posts about disability advocacy.  

You can only add a post once to the linky, but you are welcome to add more than one post if you choose.

Add your posts to the "linky" below and read some excellent posts from self-advocates and allies from around the globe.

These posts brought to you by:
Add your post now!

Tuesday, October 15, 2013

Keeping it Real

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

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

We're not unhappy.  Life is not hard.

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

But we're happy.

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

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

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

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

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

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

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

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

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

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

We're not unhappy. We're real.

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

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

Wednesday, October 2, 2013

In the News - September 2013

A collection of news articles, blogs, stories and information about Down syndrome, disability and special needs, from Down Wit Dat's Facebook page.

AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
CASE indicates a lawsuit or proceedings
EVENT indicates a scheduled event
LAWS indicates a new piece of legislation
LINKS indicates links or resource materials
PHOTOS indicates photos
POLL *NEW!* indicates an online survey
STUDY indicates a study or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video or movie

Why People Have Such High Expectations of Parents of Children with Special Needs

“Don’t give up”: With family’s help, Latina with autism is in college, pursuing career

Disabled People As A Test of Character: The Guinness Commercial
Ode to the Stim: the printable sequel

'Of course we will help her at home, but I want to be Emer's mam, not her teacher'
Smoochie Paraplegic Cat: When Disability Tropes Take on a Life of Their Own

VIDEORobert "Ethan" Saylor's Family will deliver petition signatures to Governor

Defending The R-Word
Bodies and Behaviors
POLLShould the governor open an independent investigation into the death of Robert Ethan Saylor?

Action Alert: Contact Governor O’Malley of Maryland
to Demand an Independent Investigation Regarding the
Death of Ethan Saylor - See more at:
Duncan wants to end test for disabled students that California overused
Dirty Words: Autism Lingo
Like A Person


Toronto police pushed man out of wheelchair, rights complaint alleges

Aspergers unmasked
Disability as Disaster
Drawing No Lines
Beyond The Gift
Apps for Students With LD: Having Fun
LINKSCanadian Journal of Disability Studies
On the Topic of Violence…


Silencing” the extra 21st chromosome
B.C. woman with muscular dystrophy stuck in a care home due to government red tape


Sincere Support
An update on the Huronia Regional Class Action Suit

Autistic Twins
Mother says autism intolerance more common than people think

4 Countries With the Right Approach to Dementia Care

How To Help Sensory Sensitivity
Angela Bachiller, the World’s First Person with Down Syndrome to Hold Public Office

Older people with autism in Scotland 'invisible'

If A Parent Murders An Autistic Child, Who Is To Blame?

Enforcing Shame Through Ableism

bits and pieces
Two Little Girls

The 2013 VATTA Committee

I’m Not Here for Your Inspiration, and Neither is Michael J. Fox
To the International Paralympic Committee: Let Victoria Arlen Compete

Intervention: Damaging for Autistic Children


PAKISTAN: Focus on rat-children

A Code For Pirates

...And that's the news.  Keep the stories and information coming!
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