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.


  1. It is so important that we rtalk about these things too often dismissed as "semantics", because if we don't how are we going to ever proceed as a movement? I don't want to raise another dollar for awareness campaigns, but active advocacy and outreach, now that's something I'm willing to open my own wallet for as well. Not another effing billboard...

    Awesome post as always!

  2. Great post! Yes, I agree. We don't need more awareness. I believe we need acceptance. Here's my take: I love talking about semantics :)

  3. Love this post, and couldn't agree more. And the whole pink washing thing? Yeah.

  4. I don't why people don't "get it"..
    I've been saying this and still I keep reading awareness tidbits,every freaking day.Im so sick of it.


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