Saturday, July 13, 2013

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.

Wednesday, July 10, 2013

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".

There's a fossil in there somewhere...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.


Rocks 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. 

Finding your niche...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]  

Friday, June 21, 2013

I'm Removing My Prenatal Testing Halo

I have had my moments of self-righteous judgement.  Shocking, I know.  I've strapped on my righteous halo in secret, just for comfort.

In the early weeks after discovering LP has Trisomy 21 (Down syndrome), I spent time pontificating on life and riding some emotional waves.  During that time, for a brief moment, despite all my reservations on prenatal testing, I wished we hadn't opted out.  For a brief moment, I thought we should have terminated.
For that brief moment, I felt a lifetime of guilt.

If my love had been more true, pure, strong, I would have never thought those things, right?  How could I think that awful thought while my baby lay in bed beside me?  I was ashamed to call myself a mother.

Then,  the pendulum swung the other way, and I felt a bit righteous.  I was raw and scared.  I needed to reaffirm my good (or at least not failed) motherhood.  I needed to reaffirm my love for my baby because I was terrified that he sensed my moment of doubt.  The world was telling me my baby wasn't worth it, and for a moment, I had let myself believe that lie.  To make sure everyone knew I'd come around, I strapped on my we-never-tested-because-we-would-never-terminate-halo and plunged ahead.

Let me tell you now, that was utter nonsense.  I apologize.  Deeply.  I have removed my halo.

I want to say some things to the women out there facing the difficult choices that line the road to motherhood.  Yes, to women.  In our still very patriarchal society, women bear an inordinate amount of shame and judgement for their reproductive choices.  So yes, I am talking to you, sisters.

To the mother who participated in prenatal testing, I stand by your choice to seek information.  Maybe you just needed to know, to prepare.  Maybe your doctor simply stated it was a matter of course.  Maybe you even opted to get an amniocentesis or CVS test.  I stand by you, because I refuse to judge the reasons behind your to need a  for a more certain picture of the baby you carried in your body.

To the mother who lost her baby after choosing CVS or amniocentesis, I stand by the best decision you could have made at the time.  I can't know how it feels, but I can imagine how it must cut you to hear another person glibly talk about those tests without knowing the loss you've experienced.  I refuse to judge the reasons you decided to do those tests.

To the mother who never considered termination, I stand by your conviction and certainty.  I don't know why termination was never an option for you.  Maybe infertility.  Maybe your faith.  Maybe because you simply couldn't or wouldn't.  I refuse to minimize you in any way; unwavering conviction is a powerful thing.

To the mother who did consider termination after getting prenatal test results, I stand by your private, personal journey.  Maybe you were scared.  Maybe you had no support.  Maybe you simply questioned the road ahead.  I refuse to judge the inner workings of your choices.

To the mother who terminated her pregnancy after getting prenatal test results, I stand by you simply as another woman and a mother.  It pains me to think of my own baby being aborted, but he wasn't, and I will not impose my feelings on you.  I have not walked in your shoes.  I don't know what you were told about your baby, nor do I know your baby's prognosis.  I don't know the circumstances of your life.  I refuse to judge you and I will not shame you.

To myself, the one who declined all testing, said she would never terminate and regretted my decision in a sad moment in time, I forgive you.  I reaffirm my belief to go on with pregnancy without the information given through prenatal testing.  I know now that neither my prenatal testing choices nor my doubts afterwards are indicators of my strength as a mother.

To my sisters, we may not always agree, but I refuse to judge you.  Let's all remove our halos.  We have all struggled and we are all imperfect beings.   We can stand together.

Wednesday, June 12, 2013

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]  

Tuesday, June 11, 2013

Call To Action: Frederick County Sheriff Department Accreditation Committee

The Frederick County Sheriff's Department is up for an accreditation review with CALEA, a national law enforcement accreditation group. There has been a public call for letters and phone calls from the community. It is time to let Sheriff Jenkins know that we have not forgotten what happened to Ethan Saylor. Tell the committee what happened and let them know that we want justice for Ethan.


Commission on Accreditation for Law
Enforcement Agencies, Inc. (CALEA)
13575 Heathcote Boulevard Suite 320
Gainesville, Virginia, 20155

Dear Assessment Team,

In advance of your audit of the Frederick County Sheriff's Office, I write to highlight my concern regarding that office's handling of Robert Ethan Saylor's homicide at the hands of three off-duty Frederick County deputies.

On January 12, 2013, Mr. Saylor re-entered a movie theater without purchasing another ticket for a showing of Zero Dark Thirty. Sheriff's deputies Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris were moonlighting as mall security that night and were called as such to attend to the situation. The three attempted to forcibly remove Mr.Saylor from the theater; confusion ensued as the guards dragged Mr. Saylor out of his seat. Soon thereafter, Saylor's companion returned to the theater and pleaded with the guards to let her take Mr. Saylor home.

The guards declined. Instead, they continued to apply force against Mr. Saylor, using three sets of handcuffs linked together to pin his arms behind his back. Mr. Saylor ended up face down on the ground, presumably where his larynx became crushed. Mr. Saylor then died of asphyxiation, all over the price of a movie ticket.

Following this homicide, neither the sheriff nor the local prosecutor found any conflict of interest investigating the case, regardless of the fact that the security guards were also deputies of the investigating office. Instead, they kept the matter in the county instead of using outside resources. The locally run grand jury failed to indict the deputies of the use of excessive force. Instead they blamed Saylor's death on his Down syndrome rather than scrutinizing the actions of the three off-duty and seasoned deputies.

Sheriff Jenkins has publicly commented on the problems of moonlighting officers. In the Maryland Community News Online Gazette, he was quoted as saying "“When [deputies] take an [enforcement] action on someone, they immediately fall back into law-enforcement status,” he said. “I’ve said all along that I don’t think law enforcement should be in competition with private security.” Despite his apparent concern about the ethics of such secondary work, Sheriff Jenkins still choose to not call for an independent investigation.

The Frederick County Sheriff's Office's handling of Saylor's homicide calls into question the office's commitment to professional excellence. It is of grave concern that three off-duty deputies, including two of high rank, saw fit to manhandle a young man over the price of a movie ticket to the point of death. Of even further concern is Sheriff Jenkins's decision to keep the matter in house rather than declare a conflict of interest. Such action gives rise to the unfortunate appearance that the Frederick County Sheriff's Office was solely interested in protecting its three officers rather than engaging in a transparent investigation of Saylor's homicide.

Thank you for your time and attention to this matter,

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