Friday, August 30, 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.
[Originally appeared on Down Wit Dat

Saturday, August 3, 2013

The Problem With Down Syndrome: Part 2

I just want a healthy baby.  I think every single prospective parent must utter these words at some point, but it is worth questioning.

One "common sense", yet false, assumption is that Down syndrome itself is a state of poor health.  Then, it goes without saying that the ideal state of affairs would be to get rid of Down syndrome.  This is the logic I hear time and time again in news articles, comments, off hand remarks from strangers.

It makes sense, right?  Down syndrome comes from the presence of an extra chromosome.  That extra chromosome causes the body to malfunction, right?  Therefore, Down syndrome IS poor health.  So therefore, our goal should be to make sure no one is born with Down syndrome.  Wait.  Can we slow down?

Discussing medical risk solely in terms of Down syndrome reduces a complex individual into a one-dimensional picture painted with a single color called "extra chromosome".  Most parents who get a Down syndrome diagnosis find themselves sinking into a black hole of terrifying statistics.  I don't wish to minimize these, but it isn't the whole picture.

The third chromosome isn't an unsightly ink blotch of risk on an otherwise pristine piece of paper.  We all carry risk by virtue of living.   We all carry higher risks by belonging to certain definable groups.   Sickle cell anemia.  Tay Sachs.  Cystic Fibrosis.  Thalassemia.  Familial Mediterranean fever.  It took me ten minutes of an internet search to learn about this handful of medical conditions, all of which are more prevalent in certain genetically related groups.  I'd guess that there are many genetic bases for disease and illness, science just hasn't found the common thread yet.

Also, why have I never read a single media story mentioning that living with Ds isn't solely about medical risk?  What about better prognosis after leukemia and seizure disorders, less hardening of the arteriesdiabetic blindness, fewer solid tumor cancers, fewer cavities, and lower likelihood of both cerebral palsy and high blood pressure?  Genes do not act in isolation, and I wish there were more balanced attention paid to the fact that Ds is not a disease unto itself, but a genetic existence.  Unusual, sure, but not a disease.

I also wonder what effect the diagnosis in and of itself has on rates of detection of health "problems".  When we got our diagnosis, we went through months of medical appointments to rule out statistically likely medical issues.  The results?  We have "discovered" some, but are choosing medical intervention for only hypothyroidism.  While the reasons we did all those tests were based on a real risk, I also wonder how much is confirmed simply by looking.  If I had subjected my other children to the same battery of medical screenings and tests, what would we have found?

Again, I'm don't want to minimize the real health concerns, and I think we need more understanding of what Down syndrome is, not less.  There are clearly differences relating to having three copies of a chromosome.  Still, the mainstream image of Down syndrome being a form of poor health in a way fundamentally different than a person with typical chromosomes doesn't feel right.

Lastly, I sense a real stigma permeating the discussion of medical risk and disease.  Now, I don't have a child with a significant medical issue.  (This of course, like for any human being, could change.)  However, when I read the comments in these articles talking about the new research, it almost feels as if the assumption is that an person gets leukemia, infantile spasms, Alzheimer's, etc., because of his inherently defective genetics.  To be sure, a significant risk factor could be Down syndrome, but the exact hows and whys that an individual develops a disease or condition is very hard to know.  There is no health condition that is unique to Down syndrome, after all.  My real concern: Doesn't this stigma contribute to discrimination against people with Down syndrome overall?

I just can't accept it as simple common sense that Down syndrome is unhealthy.  I just can't lay all of that on one chromosome.  Risk and statistics are very complicated, and tell us mostly about large groups of people.  It is harder with a single individual.  Just ask the mother who had a baby with Down syndrome after receiving 1 in 1000 odds after screening.  Clearly, she had a 100% chance of having that baby, but simply did not know every single factor that may have calculated into that equation of chance.

I'm saddened by the general public's quick leap into assuming that the ideal application for this new research is to "cure" or "prevent" Down syndrome itself, rather than treat a specific disease to enhance an individual's comfort and quality of life.  No one contemplates getting rid of an entire group of people in the name of better health, except, it seems, when it comes to genetic differences such as Down syndrome.  I know that the research is probably not intended as such, but why is the rest of the world so quick to go there?

My son with all 47 chromosomes is here to stay.  Let's slow down and try to understand what science has to offer, before we make any assumptions.  Down syndrome is part of genetic diversity.  It has been in existence for as long as humans have, and will continue to be.  Perhaps we should stop thinking that people with Down syndrome are surviving despite their 47 chromosomes, but with their 47 chromosomes.

Next up: Intellectual Disability*
* This, of course, assumes that I'll be able to keep my focus on this one topic of thought.  Wish me luck, as it is not a given.
Edited to add: It has become apparent to me that I haven't addressed the topic of stigma against illness and disease enough.  I do not believe there is a hierarchy of human worth based on health status.  In fact, I believe that this tendency to define Down syndrome in and of itself as a unhealthy also contributes to sometimes poor medical care for those with complex medical needs.  I can't list the number of times I have heard parents express that doctors were less willing to intervene in serious medical situations because of their belief that "Down syndrome is just like that".  What I truly want is for each individual to be treated as a unique case.  Down syndrome must be accounted for when assessing medical needs, to be sure, but it can't be the entire picture.  ~jl