Monday, August 26, 2013


"We need to call out the deaths of our people as hate crimes, not freeze-frame our bodies in sparkle-filled glamour shots that make us so super-humanly other."

I'm angry.

Not in an uncontrolled wildfire of rage that would consume my every waking moment kind of angry...   My real world life exists somewhere between a painful sleep deprived haze and caffeine fueled tangentiality.  I don't have the time (or the energy) for such wild abandon.

But I am angry.

And that is a good thing.

Our culture, ever ready with a label, likens anger to unproductivity.  It is the work of evil, it only causes harm.  Most people don't seem to consider anger as a tool, as a medium for change.  But it can be.  In my world, we call it constructive anger.  It has a large role in cognitive-behavioural therapy and treatment for things such as PTSD.  An event happens, you react with anger, a normal human emotion.  Instead of being consumed by it however, you calmly evaluate why the event angered you.  Then you use the energy of your anger to motivate you to change the situation that made you angry in the first place.

Or, in the words of Alyssa at Yes That Too:
"People talk about anger like it doesn't accomplish anything.  That's just not true.  Anger can be fuel to provide energy for activism.  Anger can be how people realize something is wrong, that something needs to be fixed."
Anger is a very powerful force.  There is a lot to be angry about these days.  There is an awful lot that needs fixing. 
This week saw this hateful letter delivered to a home that is just over an hour's drive from mine.  A letter, so full of ableist poison (and almost illiterate ignorance) that it made me physically sick to read.  Naturally, people reacted in disbelief.  How could this happen?  How could this happen here?  This is obviously a hoax, right? And so on...  Although technically "not a hate crime" (as no threats of physical harm were made), these things happen to those with special needs all the time.  This family in Colorado is fighting with their neighbours who want their wheelchair ramp removed from the front of their home for fear it will lower property values.  This flyer was put up in the Portland area, presumably to shame those with "fake" disabilities.  This veteran was kicked off the boardwalk in New Jersey and issued a summons for his service dog. While on the subject of service dogs alone,  this story was published in the New York Post, lamenting "fake" service dogs and as Stephen Kuusisto put it, is " of the most willfully underhanded pieces about disability I’ve ever seen in a newspaper."

These stories aren't random and isolated incidents.  They, and many more like them, have occurred this month

Ableism, whether you wish to acknowledge it or not, is running wild in the Western world.

I shouldn't have to mention how society views people like my son Wyatt and his extra chromosome.  Still disregarded out of hand, people with developmental disabilities like Down syndrome are still the butt of jokes in popular culture.  Children with intellectual disabilities are still denied access to education that is mandated by law;  in 2013 it is astounding that parents are still having to fight when research has shown over and over that performance of all students is improved in an inclusive setting. 

The stereotypes abound with DS, many of which are perpetuated by the medical community that we look to for advice and information.  Also sad is the fact that many stereotypes are perpetuated by those that call themselves advocates.  I've stated before, anything that describes my son as anything other than human is wrong.  Period.

A big bone of contention are the faddish inspirational memes/pictures (A.K.A. inspira-porn) which are pumped out at an alarming rate by many organizations.  I was told once, by a group that produce and condone many of those images that they were doing such to be positive.  That new parents (and --- let's get real here --- those considering pregnancy termination) needed oodles of positivity.  That the way to make life better for kids like my son, was to surround everyone in positivity because it all boils down to a matter of marketing.

I guess it's bad marketing that forces young people with disabilities to be housed in nursing homes in some places due to lack of community supports. It must be marketing that stands in the way of achieving inclusive schooling and accessible lives.  Marketing is what allows those that run social media sites such as Facebook and Twitter to not even bat an eye when new groups or events are created to mock those with special needs.  Even better was being told by some of the same people that the Down syndrome community didn't want to appear "divisive" much "like Afro-Americans [sic] or women".

People with Down syndrome come in all sizes, shapes, colours, cultures, abilities and ages.  Just like everybody else.  Many of the memes and slogans simply perpetuate the "otherness", by employing pedestal ableism and by alienating those with DS from the larger disability community.  In the words of Lawrence Carter-Long, Public Affairs Specialist at the National Council on Disability:
"Still think "the only disability in life is a bad attitude?" Try ordering from a menu with a blindfold on, smiling your way up inaccessible stairs or reading non-existent captions on a YouTube video. Don't like my "bad" attitude? Then provide equal access. You'll be amazed at how much my mood improves. Oh... and while you're at it, please check your unexamined privilege at the door. Thank you. Have a nice day!"
There is real danger with these memes.  In the act of creating this image of perfectly posed happiness, it doesn't allow for real life, for real emotions.  If happiness and docile complacency are the norm, it must have been a complete shock to many when Jenny, an adult with Down syndrome, fought and won the right to choose where she wanted to live.  Generalizations and stereotypes set up unrealistic scenarios and are damaging, no matter how well meaning.  Pedestal ableism is still ableism.  Those cute little children will grow up one day and want to have sex and get jobs and do all the things that all adults want to do.  Continuing to infantilize adults with DS, to pat people on the head and endow supernatural abilities to chromosomes will not assist with the completion of these goals.  Continuing to perpetuate the stereotypes that other disability advocates have been breaking down for decades is not surprisingly, making people angry.  From
"No, fucking no, we are not myths! We are not some mythical other! We are humans."
Essentially, to keep from being seen as "angry", or running the risk of challenging any actual ableism, real life civil rights are not on the menu with these organizations and their "inspirational" memes.  Instead, in the name of marketing, there are eleventy billion soft-focus pictures out there that are intended to make Down syndrome more palatable to people.  To be like Wonder bread;  soft,  not much to chew, devoid of any nutritional content and bleached very white.

I was also a little shocked to learn that I am not supposed to have a voice.  My son with Down syndrome is only two years old and I don't have the "experience" nor have I paid my dues.  My choosing to speak up regardless, makes me an "angry" person (which one could translate as "uppity", as I obviously don't know my place).   I too get patted on the head by some, told that in time "I'll understand" why the community chooses to operate this way.  I'm almost 42, have been a mother for 7 years, am the mother of twins and have been a nurse for over 17 years.  When exactly will that be?  How old does my son have to be before I can call shenanigans on the unjust practices directed at him?  I'm not arrogant enough to presume what my son thinks and perceives or know exactly the man that he will grow into.  I don't know that about my other two kids either.  I will do my damndest however to ensure that he gets the education he deserves and that he gets to make his own decisions, whether my CV has the "correct" amount of experience or not.

That will be done with constructive anger.  And humour... but anger will be the fire that stokes the boilers into action.  There is a lot of work to be done.  I don't think that it is too much to ask that September contains less stories of hate and ignorance.  Or that the stories that feature disability in every Lifestyle section of every mainstream publication not be written by the able-bodied or parents that haven't fully accepted their children with disabilities. I don't think that it is too much to ask that equal access and inclusive education be automatically available.  I don't think that it is too much to ask that you stop labelling my kid, stop putting him in a little box that says "happy moppet" on the outside and expecting him to act a certain way, just because you believe it makes it easier for people to accept him.  The reality is, he as a real, live human being with fully dimensional thoughts and feelings... who is just as full of shit as the rest of us.

I will leave you with the words of Cheryl Marie Wade, a lady that I only came across a few years ago when I started reading disability history for my A Brief History... series.  She passed away last week.  She was seen by some as "angry" too, which is probably why her death didn't make the papers.
"We ain't smilin' inspiration for the latest worthy cause
But generation after generation changing the laws
Parents fighting for their children.
Kids fighting for their dreams.
Maybe you've be deprived,
Maybe all you know is Jerry's kids--
Those doom drenched poster children hauled out
once each year to wring your charitable pockets dry.
The tragic--but brave, victim.
We are also Jerry's orphans,
Proud freedom fighters,
Takin' to the streets,
Takin' to the stages!
Raising speech-impaired voices in celebration of who we are--
Radical.  True.  Passing the word..."

The only way that any of this is going to get done is through action.  Through anger.  Through outrage. Through calling out the unjust and affecting change where needed.  It's going to take sweat, tears, rivers of determination and some serious balls.  Not five minutes in Photoshop.

I'm angry.

It's a damned good thing.

Sparks II
Fire, good.


  1. Not only do we need to question the ableist rhetoric, but the rhetoric of disability advocacy in general, the 'way that it's always been done', and the 'this is what works'. Everything.

    Awesome post!

  2. Yes!!

    This is fabulous! Goodness, how I appreciate and adore you!!

  3. Yep. I am angry too. I call it "mad love." Fantastic piece. Thank you.

    1. "We're all quite mad here", said Alice.

      Thank YOU!

  4. All disability (mental or physical) is fine as long as we're 'brave' about it, but no one can play the hero all the time and as soon as you slip you're reminded of all those who are doing 'such a great job' and admonished for requiring more than your fair share of understanding.
    Great piece - stay angry!

  5. good stuff! As someone with a 20-year-old I'm happy that someone with a young child is "already there," so to speak. If parents don't get angry NOTHING will change.


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