Monday, September 30, 2013

A Code For Pirates

Life is a little odd lately. Many of you noticed that I haven't been around much.  I've been battling a yet-to be diagnosed illness off and on for the greater part of September. Not only have I missed a week or two of blogging, but I've also missed work and landed in my own Emergency department twice.  Once overnight.  Once in the middle of a shift.  It's not pleasant.

Despite all the tests, I have no idea what this illness is.  I'm sure that stress plays a role here;  things have not let up on any front in that regard.  There are days, sadly, that I seemingly go from skirmish to skirmish as I deal with the issues in my path;  a forgotten appointment here, a malfunctioning appliance there.  The realization that we will soon need a new roof.  Life, all of it.  I've had many an hour to think about things since this has started...  It's true what they say, that ability is not forever.  It is indeed a fleeting thing:  accidents,   illness.  These things can easily change one's life in an instant.  As I wait for the next round of tests and the answers that they may or may not bring, I am dutifully taking my medication and appreciating what my life has given me thus far.

Time continues to march on with Team Logan.  The first week of September saw Quinn's somewhat anxious return to school.  On one hand he was eager to return to learning and structure, but on the other he was still a little nervous, given the bullying he had experienced at the end of last year and in day camp over the summer.  Maybe this year will be different, I thought as I walked back to the van the first day.

Flash forward to September 18, the night before "International Talk Like a Pirate Day".  It won't surprise you that this is a thing in our house.  Before bed, as we were watching some television, I was painting my nails black.  Quinn, who loves to watch me paint my nails and will wear it occasionally, asked if he could have his nails done.  "For pirate day" he said. 

I have to admit that I froze here for a second.  Not because he asked, not because he wanted to wear it, but because I thought of the bullying that he had already experienced.  The connection between nail polish and pirates didn't surprise me, as actors who have played pirates have sported painted nails from time to time (and lets face it, I have more than a few skull adornments lying around, including the ones I was about to stick on my fingers).  It was also Mommy time, a special little thing that he and I could do.  What came out of my mouth next surprised me, because it totally was geared towards damage control and had nothing to do with his desires for self expression.

"How about just the pinkies?", I asked, citing a bunch of stars, including Ozzy, Steven Tyler, Keith Richards who have rocked that look.  "Sure" he said, holding out his hands. 

The next morning, dressed in his pirate shirt, he went to school.  "Arrrrrr!" he said, flashing me the horns and showing off his nails.  "Hurry up!"  I countered, kissing his forehead "Love you, off with ye".

The boy who came home was not as exuberant.

His feet dragged, his face showed that sad weariness that I hoped to never see again.  What's worse, his polish had been scratched off, hurriedly, as his cuticles were red and there was black under his other nails. The ignorance from the other kids had started the moment he got on the bus and ended when he got off.  Some called him a liar, told him there was no such thing as "Pirate day" and could not understand that his nails were not a statement of gender or identification, but rather, one of art. 

He went off to play and I got angry.  Not the angry that I get accused of all the time for differentiating myself from a complacent door mat, or the "filled with hate" I'm supposed to be when I point out ableism, but an actual, all consuming, honest to goodness blind rage.  I swore like a pirate hooker into the phone at my BFF while furiously mashing apples into sauce over a hot stove.

I was at the canning stage and muttering to myself when Quinn came back into the kitchen to talk some more.  With a great deal of insight, he told me how not everyone had made fun of him but it did seem that way at times.  What was worse, he explained to me, were the people that were trying to help him take the polish off.  I knew what he was trying to say, that they were helping him "to be like everyone else".  How the people that claimed to accept him would still rather he be someone else.   It hurt me, that at seven years of age, my son was experiencing this.  He asked me "what do you want me to do?"

"Honey", I answered, "if you want to wear nail polish, wear nail polish.  If you don't, that's cool too."

I repainted his pinkies, by request, right then and there.  I added his index fingers and his thumbs... and painted the two middle fingers clear.  He flashed me an "I love you" sign as a way of thank you.  The next morning, also by request, we removed the polish as that was also his choice (and we made sure he was not doing it out of fear of more taunts).  I made sure that his teacher knew we were coming early for meet-the-teacher night so that we could discuss this.  To her credit, she made all the appropriate noises, but even she was a little taken aback when he told her that yes, he had told her... he had written about it in his journal and she had missed it.  I made sure she knew that we knew that Quinn is probably smarter than most of his classmates, that he is kind and artistic, that he is quirky... and all of these things make him a target.  I told her how the kids at camp physically assaulted and humiliated him.  I told her how one of the kids that bullied him at the end of last year is sitting directly across from him at his table in the classroom.  Patiently, kindly, firmly and without raising my voice I let her know that he is my son. That I love him, as is, dearly... and I will be damned if he is going to end up a statistic or one of the kids that come through my Mental Health ER. 

She agreed.

We drew up our plan, all of us at that time, Teacher, Mother, Father, Child.  We created a circle, a crew, one with a mission.  Everyone within is told if there is a problem, if Quinn encounters more of the same kind of treatment.  We all have a responsibility in this crew;  ours is listening to each other, including his teacher. His is telling us, especially if he can't manage it on his own.  We will act, ensuring that his needs are met emotionally and scholastically.  In nursing, it would be called a "circle of care".  In Team Logan's world, it is a code for pirates.  However you choose to look at it, the consequences of breaking the code are no less dire.

This is the first engagement of many, of this I have no doubt.  Then, in a few years, both Wyatt and Zoe will be going to school.  There will be IEP's.  There will be more circles, more crews and a lot more potential battles.  There will be high-falutin' adventure too.  But still, we must keep one eye out for changing winds as we sail these unknown waters.  We will continue to navigate this life as we always do, with the wind in our hair, the colours high, our crew at our back, giving and asking no quarter. 

Come what may.  We'll be ready.

"Every normal man must be tempted at times to spit on his hands, hoist the black flag, and begin to slit throats." - H. L. Mencken
The flag of Calico Jack Rackham, who sailed with his love Anne Bonney (and her love Mary Read)

Friday, September 13, 2013

Reflective Practice

It was raining when I started to write this.  Which was welcome, as 35 degree weather is not proper for Southern Ontario.  Especially in September.  We've needed the rain and the last growing days of the garden will welcome it and more.

The garden is not alone in welcoming this storm;  the rain was soothing to my frayed nerves and the light show seemed to pick up my spirits.  The last little while has seen a few things that have made me reflect... on life, on my job, on my advocacy and really, everything down to these words you see here.

I've been trying to make sense of a lot of things in the last little while, trying to incorporate new ideas, trying to understand the motivations behind certain things.  It's been hard.  Too much has happened, too much stimulation, too much, too much...  Back, what seems like a million years ago, I had an older Italian lady as a patient.  I sat down next to her one morning and after the usual pleasantries asked how she was feeling.  Without missing a beat, her eyes bore into mine and she half laughed.  "How I feel?  Girlie, I canna stand, I canna sit still and my headsa goin' aroun' like a chick-a-loan!"

I know how she feels.

Although not completely cyclonic, my thoughts are pretty all over the place.  I've written no less than three posts this week in an effort to get my shit together;  they cover all flavours of outrage and pain and psychiatric analysis... and I have not published a single one. It's been hard.  There's been too much.  I'm fine... well, aside from a gallbladder that hates me, but the family is fine.  But, there's been a little shakeup, a little wakeup... I've been doing some serious self reflection.  It's a side effect of being a nurse, a pre-requisite of renewing our license and really a valuable tool for everyday life as well.

All the stereotypes have come out to play in the wake of the recent murder attempt of Issy Stapleton.  I hate the intar-webezs right now.  Over and over I have seen this act discussed (by both the able and the parent advocate) with words that just blatantly exhibit the intolerance that it sprang from in the first place.  Yes, there is no doubt in my mind that her mother (who will not be named here) was mentally ill.  The system in which she was navigating is very stressful to many parents, I won't argue with you there... but it still does not justify murder, or attempted murder in any way. 

Many people, including some that I respect greatly, have commented on this incident at length.  Anything that I would have to add, at this point, would serve little purpose. As a side effect however, this horrible act catalyzed a lengthy self-reflection re: my online advocacy; an analysis in the works for some time.  I've looked at my efforts, my words, the rationale behind them. Are my affectations effective?  I've had to do this.  Issy's mom was a blogger and "parent advocate" too.  Many self-advocates are wary or flat out despise blogs by parents of kids with special needs.  This event just crystallized those reasons even more.

A valuable resource came to me as I was trying to get my thoughts organized. Alison Piepmier's Saints, Sages, and Victims:  Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities provides a great deal of insight into this issue.  Although Alison uses formally published materials for her comparison, I believe that parent advocate blogs could quite easily be used here as well.  This part in particular jumped out at me:
"Many of the memoirs I have read reinforce and thereby strengthen our culture's dehumanizing stereotypes that surround and define disability. Through their use of grief, their emphasis on a limited medicalized model, and their framing of the child's disabilities, these memoirs often represent the child not as a person but as a problem with which the parents have had to grapple. "
It's a fine line sometimes, wanting on one hand to find others to share in the experience, but at the same time, what are the costs?  When we call our children "broken", when we focus on our interpretation of their thoughts and feelings, when we refer to our children with otherworldly terms, when we focus on the difficult times, when all we list are doctor's appointments, surgeries and medical interventions, when we blame our kids for our mistakes and our bad choices, what message are we giving the world?

I just spent most of the month of April talking about my son's heart surgery.  Did I unwillingly perpetuate the medical model? Has my son become a bystander in an accounting that was meant to educate and support those (and their families) that face AVSD surgery?  Has my telling of appointments and whatnot in the early days been detrimental overall?

I don't know.  I just recently checked my Ableism at the door, so I'm probably not the best at interpreting this.

Every time I mention one of the kids or post an image I do think about the ramifications.  I think about it in context to them.  It wasn't an easy thing to talk about my elder son's bullying for a variety of reasons, the main being Quinn's interpretation of such a thing.  I talked it over with my husband,  but I made sure that I asked my son's permission too, before I breathed a word of it.  

Is this exploitative of my family?  I don't know that one either.  There are no T-shirts, I don't have a shop and there is no money being made here.  (There won't be, either.)  I already have a job, so looking for a writing career is not my intention.  The focus of my writing has changed, true, from those early days when I just wanted to raise awareness, find other twins like mine and still research the things that I could not find out about Down syndrome and did not know about prior to becoming Wyatt's mother.  Secondary gains? There are a few, including a general sorting out of my thoughts and meeting a lot of really cool people in the disability community that have helped to broaden my views.

Is it possible that I have reinforced stereotypes of disability?  I'm sure I have.   I too am an able product of this society that needs to devalue and ostracize to survive.   I'm also a member of the medical establishment, the people responsible for the perpetuation of the idea that disability is a disease and needs curing.  Toss parent blogger onto that list.  On the surface, I'm part of the problem.  No wonder I am uncomfortable in my own skin lately.

So why do this?  Why continue doing this when there is so much conflict?  That one is simple:

There are a lot of people out there that hate people like Wyatt.

Even those that claim to represent people with intellectual disabilities and developmental delays are often more concerned about image and the "correct marketing of Down syndrome" rather than basic, civil, nay, human rights. Allowing certain things to slide, things that you probably would not tolerate in another circumstance just reinforces these stereotypes and keeps things like across-the-board inclusion and acceptance out of reach.  Portraying life in over the top happiness isn't helpful either, as it perpetuates "overcoming", instead of just letting people be themselves.  My son is not a product to be marketed like Wonderbread, or the latest pop sensation.

I've gotten a little heat lately as I've been writing about some pretty "heavy" topics and apparently I should be more positive.  I'd like to lighten up, frankly, to be able to write about my daughter putting fries up her nose and announcing she's a "Rawr-rus" and all the little human moments that make our little family.   To make this more of a parenting memoir that focuses on the joy of being... well, us.  Together.  With all our little quirks and idiosyncrasies and adventures.  But I can't.  I can't because society won't let us just be us.   One of us came with an extra chromosome.  To us that's no big whoop, but it's still a dealbreaker to many people.

There are no conclusions to this one.  Reflective practice, when done correctly, is an ongoing narrative.  I know that I'm not going to do everything right, being human and all.  I hope my self-advocate friends continue to be patient with me... even when I need a round of "able-splaining".

I'm going to go spend time with my kids today and make a buttload of tomato sauce.  In the act of creating something to nourish my family through the upcoming winter, I will find a little more peace. As the twins interact with the jungle yard after the rain, as my elder son regales me with his day at school, I will be reminded why I do this.  So that all my kids can one day tell me of their day at school, where Zoe and Wyatt and Quinn can continue to grow and learn.  Together.

So that we can continue to be just us.  Together.

--------------------------------
Piepmeier, Alison. "Saints, Sages, and Victims: Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities." Disability Studies Quarterly 32.1 (2012):  Disability Studies Quarterly. The Society for Disability Studies. Web. 11 Sept. 2013. <http://dsq-sds.org/article/view/3031/3058>.

Sunday, September 1, 2013

In the News - August 2013

A collection of news articles, blogs, stories and information about Down syndrome, disability and special needs, from Down Wit Dat's Facebook page.

Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
CASE *NEW!* indicates a lawsuit or proceedings
EVENT indicates a scheduled event
LAWS *NEW!* indicates a new piece of legislation
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video or movie


BLOG
(neuro)Queer: A Prose Poem Essay
BLOG
missing my magic unicorns

Quinn defers decision on extra resources for pupils with Down’s syndrome
LINKS
Leadership in the History of the Developmental Disabilities Movement
LINKS
BLOG
I Just Have a Kid
BLOG
The Problem With Down Syndrome: Part 2

Social Security Administration Erases the “R-Word”


‘Airline banned me from seat’
BLOG
Seeing But Unable to Believe
BLOG
Nursing Jude

Disease Is Not A Metaphor
BLOG
"Leukemia Sucks, Down Syndrome Doesn't"

BLOG
BLOG
BLOG
Defending The R-Word
The Problem With Down Syndrome: Part 3

When Cops Criminalize the Disabled

BLOG
Action Alert: Contact Governor O’Malley of Maryland
to Demand an Independent Investigation Regarding the
Death of Ethan Saylor - See more at: http://www.ndss.org/About-NDSS/Newsroom/Recent-News/Action-Alert-Ethan-Saylor-Update/#sthash.2UoMhRDE.dpuf
The Burden of Goodness

Revolution!
Revolution!

BLOG

VIDEO

VIDEO



Disability rights advocates, families fight new provision of Affordable Care Act
Like A Person



BLOG
BLOG
APPEAL
Petition Calls for End of Electro-shock Therapy for Autism


Army veteran kicked off North Wildwood boardwalk by police because of service dog
BLOG

Man with learning difficulties to be sterilised in unprecedented court ruling
BLOG
Don't Call Me Autism Mom
VIDEO
Ethan Saylor: Sheriff speaks about Down syndrome man who died in police custody

VIDEO
Ethan Saylor, man with down syndrome, who died in police custody, may have not needed movie ticket after all




Problem Solver and Redefining Independence

Open letter to the woman sharing my flight from LAX to PDX
BLOG
Quiet Hands

Hollister Ordered to Make Faux Surf Shacks Wheelchair Accessible

23 Ways To Communicate With A Non-Verbal Child

VIDEO
Family in shock after hate letter targets teen with autism
VIDEO

From Two Ends of the Spectrum, Hate and Ignorance About Autism Abounds

VIDEO





Practice Language for Kids Nervous About Social Life

Future Past: Disability, Eugenics, and Brave New Worlds
BLOG
Your Worst Nightmare


Down Syndrome Man Goes to Movies, Ends Up in Morgue

Autism Speaks Sued by Mother of Autistic Child

BLOG



Support for a Mother with Disabilities to Parent

How To Help Sensory Sensitivity
How to Help Sensory Sensitivity


Ali's Place: After school experience for youth with disabilities
APPEAL
Tell the White House to STOP rules that cause institutionalization


Justice for Down syndrome man who died in movie theater
BLOG
BLOG
Mad Love
BLOG
Memories Evoked
VIDEO
Robert Ethan Saylor Petition on Change.org Gains More than 300,000 signatures

BLOG
So Much For Interpretation
APPEAL
Help Avoid a Strike or Lockout, Sign Our Petition


...And that's the news.  Keep the stories and information coming!

Monday, August 26, 2013

Anger

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

I'm angry.

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

But I am angry.

And that is a good thing.

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm angry.

It's a damned good thing.

Sparks II
Fire, good.
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