Advocacy

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.

[Originally appeared on Down Wit Dat] 

When We Slip and Slide - A Lament

Nope. No actual water in this post.

What is raising awareness? Is it asking people to realize that something exists? Is it factual information? Is it trying to wake people up to the reality around them? Or does it carry with it the connotation that there is something one should be aware of so that it doesn't sneak up on one, so that one is not, let's say, affected by a condition?

Lately, I've been having an increasingly difficult time with seeing raising awareness as something that results in a purely positive outcome. It is no longer enough for me to say that we need to move on from awareness, that awareness is fine and all, but that we need to do more. Now I have to go and question the whole idea of 'raising awareness' too. But then again, that's what I do: I can't just, for the sake of Frank and all of his penguin minions, accept things for what they are - good and pure and nice and not meant like that. </sarcasmfont>

I always have to dig, wonder, question, and reflect.

Dammit, if I'm not just "full of hate" and "looking for things to be confrontational about." Ho hum. Yes, more sarcasm.

But October is Down Syndrome Awareness month. There will be many people who will be especially vocal about Down syndrome, many bloggers who will be doing a blogging prompt called 31 for 21, which essentially means that they'll be writing a post to raise awareness about Down syndrome every day of the month of October. I wish I had that kind of blogging energy or the inspiration, but there just isn't enough coffee or wine in this world for me to blog every day (also, there may be too much good stuff to read to actually produce any stuff of my own). I own that. Last year I managed one post. This year I'm not even going to preface this post with a bunch of excuses. You all know I spend a lot of time just sitting chasing a wily toddler drinking thinking not cooking reading doing laundry resetting and degooifying the 'puter, the iPad, my phone, and the DVR living and being generally a big wet blanket, right?

I'm excused and can just harp from the sidelines. Awesome.

There will be many, many posts about Down syndrome. Countless cute, some not so cute, and maybe a few 'educational' photos. Lots of talk and stories, and the like. Plenty of dispelling of false or antiquated beliefs and completely wrong information. Some complaints. Many funny anecdotes and observations.  Some facts, many should-be-but-maybe-not-exactly-are-facts, and perhaps a few beliefs and observations masquerading as facts. Still, lots of good, lots of community, and lots of love.

Love is always nice. Isn't it just?

But sometimes we I have to be contrary. Sometimes I have to embrace my anger at the society as a valuable tool, turn it into outrage, and challenge the very things I apparently should not be questioning. Because if things make us feel good, help us get by, or help to keep the boat from rocking, if they make us feel like "we're all in this together," they are beyond reproach. Huh? And questioning ideas written in stone as far as Down syndrome goes would just be mean and divisive and not beneficial to the cause.

It could fuck with the kumbaya.

Yeah. There'll be things in this month of blogging I want no part of. Because raising awareness -  especially when this 'raising awareness' opens the door to pretty much anything one wishes to say about whatever that awareness is being raised about - does not necessarily promote meaningful inclusion, acceptance, or equal rights. Which, incidentally are the cause I'm interested in.

Awareness does not necessarily lead to acceptance. Ideally it does, but ideally I'd also be blogging every day this month to a receptive audience, and always have the sun shine when I need to get across the Target parking lot with a toddler and a couple dozen pounds of Halloween candy. And ideally I'd have no desire to eat said candy. Ideally my kid would just stick with saying the "no" when she doesn't want to eat something and skip the grand display of 'here, this is how much I will not eat this crap and will instead place it in your lap, on the chair, and on the floor'. Ideally.

But that's just not how stuff shakes out. Or doesn't. Egg stains, people. Egg stains.

Sometimes raising awareness about Down syndrome becomes about a heightened sensitivity to that which all too easily makes a person with Ds the Other, and worse yet, people with Ds a unified, homogeneous group Other. Awareness of a condition can lead to the idea that people with the condition need to be handled or dealt with in a certain way, differently from those without the condition, and potentially to the notion of differing expectations of the people with the condition. Raising awareness about Down syndrome, the genetic condition, can easily chip away at the individuality of a person with Down syndrome, the people who have this genetic condition, by drawing on generalizations and sometimes even stereotypes, and by linking the condition with a person's identity to such an extent that the person's other identities will always take the backseat, if the observer is even willing to entertain identities beyond 'a Down syndrome person' to begin with. In reality, any awareness about Down syndrome focusing on anything specific (I use this word while understanding that there is nothing purely specific to Trisomy 21) regarding Down syndrome will naturally work to Other people with Down syndrome for the unaffected observer. Awareness can erode individual personhood by zeroing in on perceived commonalities and differences from the 'general populace' in a way that directly and simply links them to that triplicate of the 21st, instead of making all of the necessary connections, such as the connections to and considerations of intellectual ability, gender, upbringing, nationality, daily routine, age, height, placement in the order of siblings, religion, genetic makeup, ethnicity, social circles, hair color, education, physical ability, disposition, and countless, countless, other outside factors. I say 'outside', because the importance we attach to any of these factors, including one's chromosome count, comes from the 'outside', the social constructs at work in our environment.

My child does not enjoy music because she has Down syndrome. She enjoys music because she has existed since before her birth constantly listening to it, because I enjoy music, because she's been enrolled in music classes since she was 6 months old, because I sing to her, because her father sings to her, because her grandparents sing to her, because if I run out of avenues to entertain her I put on Baby Signing Time - the ones with all of the songs, because she sees that music makes the people around her happy and content and it's part of the celebration in our lives. Yes, the love of music is in her genes too, but she doesn't enjoy it because she has a third copy of the 21st chromosome.

Notice the difference?

Awareness can all too easily become about "Down syndrome things." It can slip from medical conditions slightly more prevalent in the population with Ds to complex behavioral patterns directly linked to the chromosome, insidiously enforcing Othering and, in the worst case scenario, allowing for medical professionals, far too quickly, to brush off valid medical issues that need attending to with "We often see this in Down syndrome," and simply resort to awareness instead of taking action (See what I'm doing here, making too simplistic a connection, a connection that kind of sounds like it fits and in a way it does, but when you really think about it hides behind it a much more intricate process?)

Granted, this looking at perceived commonalities can make us parents of individuals with Ds feel safe and secure in shared experience, but is it really worth it? Do I need 'support' and 'community' more than I need for the world to accept my child as is, without a laundry list of 'Associated with Down Syndrome'? Do I crave similarity and things made simple more than I do the adventure and acceptance of the unknown that is the individual life I lead? In reality, Down syndrome is not even a syndrome. It's a genetic variant called Trisomy 21, not a group of co-occurring symptoms. The symptoms of Down syndrome are after all such horrifying inflictions as a single palmar crease, epicanthic folds, impaired intellect, and other life-threatening abnormalities, none of which are present, ever, in the general population, but are always, always present in Down syndrome. There really should be a pill, you know.

Excuse me while I scream in frustration. Having to be that facetious and liberal with italics does that to a person, you know.

(There would be a really cool gif right here of someone notorious screaming, right after rolling their eyes, if I were able to create one. Or understood what gifs are, really. Next century, I swear.)

I like a nice community feeling, of course I do. Do I believe that having Down syndrome should naturally lead to membership in a community, a tribe? Is there anything so specific about Down syndrome that my child needs to have others in her life who also have Down syndrome, have a doll that has Down syndrome, or have her parents associate with other parents of children with Down syndrome? No. I do believe that there may come a time that my child will enjoy having friends who also have an intellectual disability, and/or will have a hard time keeping friends who do not have an intellectual disability, yes, but that doesn't have anything to do with Down syndrome specifically. There may also come a time that she will not want to play with some kids because they're not into playing 'zoo' or building with legos, and there might come a time she won't want to hang out with someone because all they speak about is the crappy music of the latest Justin Bieber, and, well, there's just more to life than tween pop.

I'll let her find her own way.

Ideally, I'd like to have her find it without having a certain type of awareness hanging over her head while she's trying to go up and talk to a kid, sign 'play', and then rip a ball right out of that kid's hands like that's what it means to share (true story, y'all). In the future, she might not always fit in because of how our society treats people with intellectual disabilities, but because of her Down syndrome? Only if we let it become synonymous with her identity.

Ideally, I'd like to be a part of a larger disability community as an ally. A community which unites because of how the 'able' population in society view and treat their disabled fellow humans, not because I'm interested in romanticizing the extra chromosome in my daughter's cells. A community that doesn't commiserate and isn't heavy handed with honey (and fundraising) when in fact vinegar is called for.

So while I celebrate my child in this month of October, it being her birthday month and all, and in all the other months, and while I have no problem whatsoever with Down syndrome in general, and my kid's Down syndrome which I wouldn't wish away in a million years, specifically, I wish we were part of a community that comes together as a resistance formed because of the segregation and oppression of those with Down syndrome, not a community that unwittingly sometimes contributes to the Othering of my child and others like her (See what I did there? That's how easily we slip and begin sliding...).

Anyhoo, who's in for a little overthrowing? I'm free most Saturdays and come with wine.

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

A Year Ago Today, or Letting the Past Person You Were Deal With Her Shit

Last year, on the 11th , I spent the day in a fine state of anxiety. The Dr. who had performed my amniocentesis had said there was a possibility that the 11th might be the day they received my FISH results. I practiced being positive by telling my mom and H "Down syndrome is not a big deal. It's going to be okay." My inward reflections were a bit more complicated. I would go to the bathroom and cry quietly because I didn't want my mom or H to worry. At about noon, I started to relax because even while I did want to know, I also kind of didn't. There was a bit of peace in that in between land but if I was honest, it was peaceful because I would tell myself that Jude did not have Down syndrome.

The peace was shattered when the phone rang at 2:00. The results were in. Jude had Down syndrome. I  spent a lot of the day weepy. Not from sorrow or regret. I was scared. I didn't know much about Down syndrome. I cried from the fear. But I also cried because people reached out to me. Women on the pregnancy board at Baby Center told me it was going to be okay. My friends told me it was going to be okay. My husband and my mom told me it was going to be okay. The only one who worried it wasn't going to be okay seemed to be me. '

But what I did know was important. I knew that I wanted this little fetus growing in my belly as much as I had wanted all my other beasties. Love is a powerful thing. But sometimes even love's light doesn't chase the shadows away.

The real stuff happened in the coming months. The hard stuff. The good stuff. Because here's the thing. I wouldn't go back in time and tell the past Ginger anything. She had some shit she needed to work through you see. And yeah my bad ass future self feels a little bad for her tears and boohooing BUT...

Well let me haul out my favorite Audre Lorde quote: "I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives here. See whose face it wears. Then the personal as well as the political can begin to illuminate all our choices." I used to focus on the Master's tools part of the quote which I left out in this space because I realized how incredibly fucking important the remaining piece is to becoming a person of conscience, compassion, and action. You see the personal as political isn't about your warm fuzzy feelings, or about spilling your guts in a tell all memoir. Instead, it's something harder, something that requires work, and frankly, something that feels pretty damn awful while you're going through it. The personal only becomes political when you finish an examination of how you embody the power that oppresses you and others. When you root it out, acknowledge it, and turn into an impetus for change.

What happened is that for the next five months, I had to do this hard work. I had to face my own prejudice about people with intellectual disabilities. I'm not going to make any excuses for myself either. It doesn't matter that I didn't know anyone with Down syndrome. Not knowing people who are different in various ways is not an excuse for ignorance or intolerance. Nor does it matter that I was scared. I say this because I had to be frank with myself. I knew better, you see, because I have studied difference. I have lived with it in various ways. But there was still deep inside me a fear of a certain kind of difference. A fear that came from my own arrogance, my own insecurities. I who had placed so value on the academy was about to give birth to a child who challenged if that was even valuable. 

And trust me I believed some bad shit. I thought she was going to be hideous and thus had to root out all my bias on difference being beautiful.  Difference is beautiful I would come to see before I even laid eyes on my lovely daughter. People with Down syndrome are beautiful. Very. In fact, I think beauty is so much bigger than I ever allowed myself to see.

I thought people with Down syndrome were dull and uninterested in the world. I began to read about people with Down syndrome. They were clearly engaged and excited about the world. Many were artists. Some were activists. And most were just average people like me. Living life as it came at them. 

I thought that Jude would be a drain on her siblings. I worried that I would spend so much time "fixing" her that they would resent the lost time. I feared they would not want to take care of her when she was older. What I learned is that people who siblings with Down syndrome have more positive experiences than negative.

Somewhere along my dark journey to true love, I also learned that people with Down syndrome sometimes go to college. But by that point it no longer really mattered. Because what I had really learned through all this was that people with Down syndrome were different, yes, but different in the ways that we are all different. They were different from each other. Different from me. They were varied, individual with different interests, passions, lives. The only one common experience they seemed to share was that a lot of people didn't see them as being fully human. People like me. And then I shed some tears about my own small cruelty found in ignorance. But after those tears I pulled on my big girl panties. Because seriously? You don't want to fuck with my beasties. And there's a fight to be had here and now for Jude and for people like Jude. Human people. Real people. People who deserve equal care, equal rights, and the opportunity to live a full, varied life. 

The personal became the political before I even held Jude's tiny body in my arms. And that is how I became a better person. Not through Jude but because I wanted to be a better person FOR Jude. FOR my other beasties. FOR the world. So no I wouldn't go back and give the past Ginger any tips. She clearly had some shit to work through.

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]  

Call to Action: Va. Lt. Governor Candidate E. W. Jackson

According to his book, Ten Commandments to an Extraordinary Life, the Republican candidate for Lt. Governor in VA, E.W. Jackson, believes that "birth defects" are the result of sin. 

"It is the principle of sin, rebellion against God and His truth which has brought about birth defects and other destructive natural occurrences."

After centuries of ignorance, we're still battling for basic human dignity.

Tell E.W. Jackson that genetic diversity is not the result of sin.

EMAIL
info@jacksonforlg.com

FOR MEDIA INQUIRIES
press@jacksonforlg.com

ADDRESS
P.O.Box 15003
Chesapeake, VA 23328

PHONE
757-802-4246

TWITTER: @Jackson4VA

FACEBOOK: https://www.facebook.com/jacksonforlg

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 Uprising's Advocacy Blog Symposium

Before work, after the dishes, in the doctor's office, when the kids are sleeping, at the hospital, hiding in the linen closet, at a traffic stop - What Does Your Ever Day Advocacy Look Like?

Do you change laws, minds, or the world?
 
Advocacy and activism mean different things to different people. For two weeks, Down Syndrome Uprising will be holding a blog symposium to celebrate everyday advocacy in all its forms.

Add your Down syndrome advocacy posts to the "linky" below and read some excellent posts from all over the world.

This Blog Symposium brought to you by:

Down Syndrome Uprising

Add your Advocacy post now!

 
Here is the code source to copy and paste to produce the return textlink on your blog.  If you require assistance, please contact us here.


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<span style="font-family: &quot;Courier New&quot;,Courier,monospace;">This post is part of a Blog Symposium brought to you by:</span><br />
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Press Release - Activists Mobilize to Demand Justice for Robert ‘Ethan’ Saylor

For Immediate Release

May 1, 2013

Activists Mobilize to Demand Justice for Robert ‘Ethan’ Saylor

Fredrick, MD — Down Syndrome Uprising (DSU) and T21 Brigade have joined forces this week to call on Maryland’s Governor Martin O’Malley and Attorney General Douglas F. Gansler, to demand an independent investigation into the homicide of Robert ‘Ethan’ Saylor that occurred on January 12, 2013.

Citing the failure of the local State’s Attorney Charlie Smith to prosecute the homicide of Mr. Saylor, activists express concern over the possibility of local law enforcement protecting its own. Smith presented the grand jury with information about the case derived from an investigation conducted by the same agency that employs the police officers involved in Mr. Saylor's death.

Smith’s statement, following a grand jury hearing, that Saylor was "compromised by his Down's Syndrome [sic]," shifted the blame for Saylor's death onto his genetic condition rather than the improper restraint technique used on him after he refused to leave Regal Cinemas Westview Stadium 16 in Frederick City, Maryland once the movie ended. 26 year old Saylor was restrained face down with his arms behind his back causing him to suffer positional asphyxia. His death was ruled a homicide by the medical examiner.

Down Syndrome Uprising (DSU) and T21 Brigade, two grassroots activist groups, are working in tandem as The Down Syndrome Collective to redress the violation of Ethan Saylor’s civil rights that caused his death. “What has happened to date in investigating how a man died alone, crying out for help on the floor of a movie theater has been a sham. Only an independent investigation can honestly answer the manner of his death” says Taina Karru-Olsen, from DSU.

Jennifer Campbell of T21 Brigade explains, “Parent advocates have joined together seeking justice. We are keenly aware that Ethan Saylor could be any of our children, and are demanding an investigation that does not blame Down syndrome for a homicide.”

About The Down Syndrome Collective, T21 Brigade, and Down Syndrome Uprising

The Down Syndrome Collective is comprised of about 2000 members from both DSU and T21 Brigade, working to demand equal human rights for people with Down syndrome.

Established in 2009 as the Oz Squad, T21 Brigade is responsible for the removal or retraction of offensive material related to Down syndrome from a variety of online and print sources.
T21 Brigade Facebook page
T21 Brigade Blog

Down Syndrome Uprising (DSU) has over 1,000 members and is a grassroots online activism initiative that serves as a communication hub for a unified, global community of Down syndrome activists. Formed in January, 2013, DSU is organized by six mothers of children with Down syndrome living in four countries.
Facebook page: (https://www.facebook.com/DownSyndromeUprising)
Blog (http://downsyndromeuprising.blogspot.com/)

Media Inquiries

Sandra Lynn
T21 Brigade
(518) 496-6932
ds.mama at yahoo dot com

Taina Karru-Olsen
Down Syndrome Uprising
(425) 246-4530
Downsyndromeuprising at outlook dot com

Concerned parent writes NDSS and NDSC

This letter was sent to us by a concerned dad. It follows up on a question he asked during the NDSS, NDSC and FRIENDS Town Hall call on Tuesday. We think he makes some excellent points. We hope that NDSS and NDSC read this letter carefully. 

Dear Mr. Colman and Ms. Goodman,

I write to follow up on yesterday's town hall conference call.  First, I want to thank you for hosting the event.  I appreciate the effort at community outreach.

At the meeting, I expressed my view that Maryland state officials should be the focus of our demand for an independent investigation rather than the federal government.  Today I wish to follow up on that topic.

As we discussed, it is encouraging that the United States Department of Justice ("DOJ") has reached out to your organizations.  Like you, I remain hopeful that someone inside the DOJ will initiate an impartial investigation of the Saylor homicide free of the personal entanglements that derailed the matter at the local level.

I am, however, concerned about over-reliance on federal action.  To begin, as we discussed, the federal actors you are in touch with have relatively narrow mandates limited to civil rights, disability rights, and overlap between the two.  Yet for the reasons we discussed, this case---while presenting a fairly clear-cut case of excessive force---may not reflect the willful deprivation of Mr. Saylor's rights due to his status as a legally protected minority.  Similarly, I am concerned that a claim that the off-duty deputies violated Mr. Saylor's civil rights may be complicated by the fact that the men were acting in a private capacity on the night in question.

More fundamentally, I am concerned that over-reliance on "civil" and "disability" rights to establish the guards' culpability undermines the core narrative that our community should adopt and repeat: that because Ethan Saylor had Down syndrome, the off-duty deputies did not view him as worthy of basic human dignity, and they thus overreacted to an innocuous situation by killing him over the price of a movie ticket.  Viewed from this perspective, Mr. Saylor's death presents a violation of the basic human right to life.  By relying on the narrower statutory rights enforced by the DOJ, I fear that our community will lend credence to the off-duty deputies' narrative of innocence: that miscommunications and/or health problems stemming from Mr. Saylor's Down syndrome are to blame for the homicide rather than their own misconduct. 

For these reasons, I believe Mr. Saylor's case is best cast as a violation of state criminal law, and that it falls primarily on the higher Maryland authorities to see that justice is served.  On this point, the Trayvon Martin case from Florida serves as a useful point of comparison.  There, as here, the killer overreacted to an innocuous situation based on his personal prejudices against the victim, i.e., that Mr. Martin (a young black man) was not worthy of basic human respect.  Similarly, there, as here, local law enforcement placed its stamp of approval on the killer's misconduct by failing to seek criminal justice.

There, however, unlike here, a massive outpouring of public outrage---fueled in large part by national advocacy groups such as the NAACP---forced the governor's hand to appoint a special prosecutor, who ultimately brought criminal charges against George Zimmerman. 

That, I believe, is where your organizations come in.  Governors and attorneys general are inherently political creatures, a circumstance that cuts in both directions.  On the one hand, politicians frequently have their eyes on re-election and/or higher office, and are thus reluctant to ruffle the feathers of law enforcement, whose support they believe they will need to advance their own careers.  On the other hand, politicians will respond to public pressure when they believe it is in their best interest to do so.

As the Trayvon Martin case demonstrates, large national advocacy groups such as yours have the prestige, platform, and resources to galvanize their constituencies (and others similarly situated) to compel action at the high levels of state government.  I thus urge you to focus your attention on the Governor and Attorney General of Maryland, as well as any other appropriate high-level officials, to launch an impartial investigation of Ethan Saylor's homicide in addition to any action that the federal government may (or may not) take.

Yesterday you reaffirmed your commitment to demanding an impartial investigation.  I take you at your word.  Please do everything within your power---including contacting the appropriate authorities, organizing marches and rallies, coordinating social media efforts, and so on---to grab the attention of the appropriate state officials before it's too late.  I believe this action is a moral imperative of your respective offices, and that only you have the ability to coordinate the large-scale efforts necessary to ensure Justice for Ethan.

Please feel free to contact me any time regarding this matter.  Thank you.