Friday, February 21, 2014

The T-21 Blog Hop, February 2014 -- Ableist Language

I wish I could say that I had to think really hard about this month's topic.

Even before my friend Michael Scott Monje Jr. suggested this topic, I had run into numerous examples lately of ableist language being used--and even defended--by advocates and activists in other communities. 

I cannot say this enough:  whether intentional or not, whether a word was "once accepted" or not, whether you know/knew/have someone in your life that the slur may pertain to, it does not matter.  A slur is a slur, no matter how you try and dress it up afterwards. 

Thanks to the tireless efforts of many, the R word (or "retarded") has now become a readily recognized example of such a word.  However, there are many more.  Search your own vocabulary and explore the etymology for many of the words you use to describe "ridiculous" or "not thought out".  Words like stupid, imbecile, moron, idiot, cretin... all have their roots in ableist oppressive language.  To be specific:  if you are describing an object, person or situation in your life with a term that equates to the old eugenics term 'mentally deficient', you are using ableist language and in turn denigrating those with actual intellectual disabilities/developmental delays.  When you are describing an idea as 'blind' or 'dumb' or an economy as 'crippling', you are doing the same thing to those with other disabilities.

When it doubt, say something else.  On top of it all, it's hard to argue that one should stop demeaning one group of people when you are in the middle of dehumanizing another.

It's bad enough that folks have to put up with this kind of thing from the general public and celebrities (I'm looking at you Jerry Seinfeld), but to hear it from other advocacy communities, given how intersected we really all are... well, it's really disheartening, frankly. 

Remember it's not about you.  It's about the people who, in times past, were labelled with these words and outcast, brutalized and often killed outright.

This month, I encourage disability advocates to post their pieces discussing ableist language.  Be they old or new, I want to show how diverse the disability community really is and how so many different people are affected. 

If you need more information about the T-21 Blog Hop, you can click here.

For more detailed instructions on how to add the script to your post, click here.

[Update Feb 22:  The thumbnails may not be working below due to a server switch by LinkyTools.  The script is still able to accept new posts and I am told the images will be back as soon as possible.  To quote Clerks:  "I assure you we're open!"]

Sunday, February 16, 2014

Love Letters

Today is a very special day in my house.  Today the twins, Wyatt and Zoe, turn three. 

Three is such a transition year for us.  They are not babies any more (although I still slip and occasionally call them that), nor are they toddlers any longer.  Now we're entering the world of preschooler, which is both wonderful and terrifying at the same time.  If you'll excuse me now, I'll be in the corner pulling on a bottle of JD and alternating between contemplative silence and hysterical laughter on that one.

As the distance grows between this point and what I am now calling their post-birth freakout, I've come to realize--with the clarity that only time brings--that the source of all the grief wasn't what I thought.  It had nothing to do with Wyatt having Down syndrome.  It did have a little more to do with him having an Atrioventricular Septal Defect and Zoe having an inguinal hernia that required surgery at six weeks of age.  It had a lot to do with the suddenness of their arrival, the major abdominal surgery that brought them into this world, the routine and nature of the NICU and the litany of growth charts, imposed feeding regimens, assessments and appointments.   Plus:  There.  Are.  Two.  Of.  Them.

Never, ever, underestimate how busy parents of newborn twins are.

But, here we are. 

Three. 

Holy fuckballs.

As this day grew closer, [read: last week some time] I decided that I wanted to write my children each a love letter of sorts, something that they could read in the future.  I saved sharing them until today, simply because I didn't want them to get mixed up with the hoopla of Valentine's Day.  These are love letters of another sort.  Ones that go a little beyond cutesy hearts and flowers.

For Zoe:

For my daughter, my mini-me.  You resemble me more than just with the shape of your face and your dark eyes, love... I recognize that heart as it is a piece of my own.  Your strength goes so much deeper than your physical prowress.  You are funny; quick and darling; all rolled up in a ball of glorious noise.  You sing along to Led Zeppelin, Stevie Nicks, Joni Mitchell, The Ramones, Heart, Janis Joplin and anything else I throw your way... and dance without hesitation.  Whether as princess or a pirate, you are as fierce as my love for you.

From your stealthy refusal to be captured on ultrasound initially, to your refusal to even be
born, you have demonstrated time and time again how strong you are.  You were not much bigger than my hand when you were born, in fact your entire hand gripped the first digit of my pinkie finger.  I was terrified the first time I went to hold you, until you started to wail with a volume that beat against my ears.  I had concert ring for the first three months of your life.  There is no doubt in my mind that you will ever have trouble making yourself heard.

May you never squander your gifts on anyone less deserving.  Let no one or no thing ever dim that fire that burns bright within you. 

Always be you.  No one else.

You would think (hope) that the letter for my son would be same, perhaps with a little tweak geared towards him being a boy and her being a girl.  But sadly, this is not the case.  What I want to say to my son, and what I have to say to him are still, in today's world, two separate things.  To Wyatt, I will have to stress to him, more than the other two, to be wary of strangers.  He absolutely has to understand that everyone that claims to mean him well, won't.  That may mean his teachers, his therapists, doctors and nurses and even the police.  Wyatt will have to know that well into his adult years, there will be people that will treat him like a child, that misunderstand his nuances and actions.  There will be people that write him off completely...  That feel that his life is not worth as much as another, that try and deny him his basic humanity.

[I cried while writing that.]


...Or not.

I hope not.  I hope by the time that Wyatt reaches adulthood, that my pausing here will seem old-fashioned, outdated.  That things like acceptance and meaningful inclusion will be just a matter of course.  That competency will be presumed automatically.  He will be seen as just another flavour of humanity and be allowed the according rights and freedoms.  He will be seen as my son, nothing more, nothing less.  Because that is what he is.

I want people to see my son, for him.  As I see him.  As he is. 

For Wyatt:

For my son, my mini-Sean.  You resemble your father more than just with the shape of your face and your complexion.  You have his gentleness and his sense of humour.  Your will is matchless, your determination nothing short of remarkable.  You are funny; quick and adorable; a complete package of noise and dirt.  You sing along to the songs that your older brother and I sing to you... and cheer without hesitation.  Whether concentrating on a new task or asserting your place in this world, you are as fierce as my love for you. 
From your determination to be born and get this lifetime started, to your complete disregard of any sort of medical predictions regarding your health and development, you have demonstrated time and time again how strong you are.  You were not much bigger than my hand when you were born, in fact your hand almost completely gripped the first digit of my pinkie finger.  I was terrified the first time I went to hold you, until you snuggled into my neck and sighed, as if to say "this is what I was looking for".  There is no doubt in my mind that you will ever have trouble expressing yourself.
May you never squander your gifts on anyone less deserving.  Let no one or no thing ever dim that fire that burns bright within you. 

Always be you.  No one else.

Happy Birthday to my littlest peeps.  You and your older brother are the reason I fight so hard.  May you all know that you are loved and cherished for exactly who you are. 

And always will be. 

Love,
Mom.

Friday, February 7, 2014

In the News - January 2014

A collection of news articles, blogs, stories and information about Down syndrome, disability and special needs, from Down Wit Dat's Facebook page.  These are the first from 2014.


Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
CASE indicates a lawsuit or proceedings
EVENT indicates a scheduled event
IMAGE indicates a graphic or image
LAWS indicates a new piece of legislation
LINKS indicates links or resource materials
PHOTOS indicates photos
POLL indicates an online survey
POST indicates an advocacy statement made through social media
PRESS indicates a press release
QUOTE ***New!***indicates a meaningful quote
STUDY indicates a study or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video or movie clip


BLOG
Inspiration Is Not Inclusion
IMAGE
BLOG
An Interview With Emma About Stimming
QUOTE
"The beauty of human beings lies in their capacity to accept who they are..."
POST
"Apparently tomorrow is Fidget Friday! Lovely!!..."
BLOG
Strengths, Stretches, and Autism: More Lessons from the Thrift-Shop
BLOG
Socially Inappropriate

BLOG
Happiness is Probably not a Warm Gun
BLOG
Breaking Up With Doctor Normal
QUOTE
"Pride is not an inessential thing. Without pride, disabled people are much more..."
BLOG
BLOG
Too Big to Fail
Cop Allegedly Said ‘We Don’t Have Time For This’ Before Shooting Schizophrenic Teen To Death


POST"Ethan Saylor’s birthday is this week. On January 9th, Ethan would have been..."
BLOG
A Verbal Assault and the Diminishment Elevator
BLOG
Elevator Buttons
BLOG
Shame On Us
BLOG
Your Voice Matters: The Use of “Crazy”

VIDEO
BLOG
What Katy Did - To All Of Us
BLOG
Each Day Is Filled With Joy
POST
"From Dave Hingsburger:  "My response to him was the same response..."
BLOG
Thoughts on Privilege
BLOG
Are You a Bully in Sheep's Clothing?
BLOG
Why Language Matters….Bound and Determined to End the Media’s Archaic Stereotypes
POST
"Sure, you're allowed to bemoan "political correctness," put up your defenses..."
QUOTE
IMAGE
"Image Description: White square framed in blue/green. There is a ..."

Revealed: Autistic children locked in unsupervised ‘isolation rooms’ for hours
BLOGBalls
IMAGE
"It's not like a diagnosis changes the wonderful child you love..."
BLOG
“Be Patient With Me…”
BLOG
When I Ask For an Assistive Listening Device, Feel Free to Treat Me As a Full-Fledged Person
POST
BLOG
Autism and Human Rights
BLOG
POST
Safe Bet: People who assert other things are "more important" and that "words..."
BLOG
Tone it down
BLOG
The Illusion of Knowledge
BLOG
Lack of representation in fiction: Why is the disabled character always a cisgender, heterosexual, white man?
BLOG
Why Meeting Needs Matters
BLOG
2014 – The Year of Loving and Accepting Me for Me
BLOG
BLOG
Acceptance Over Awareness – Celebrating 3ELove’s International Day of Acceptance
BLOG
BLOG
A Community Divided Over Accessible Locations
BLOG

Backish

Backish
BLOG
Kick That Door Down
POLL
BLOG
The Sum of One
BLOG
#abledpeoplesay awful things sometimes
BLOG
Cartographies
BLOG
Moral Compass: Take #PosAutive Action and #BoycottAutismSpeaks
BLOG
Inclusion, Communication and Civil Rights
Inclusion, Communication and Civil Rights
BLOGHOPE SPRINGS
BLOG
To Raise Up An Advocate
BLOG
It's not about political correctness, it's about not being an asshole
BLOG
"What are you doing to ensure that students with disabilities are safe from..."
BLOG
BLOG
Fabulous Fringes: A Poem
BLOG
Walk in My Shoes
BLOG
Politics of Parent-Run Autism Groups
BLOG
If #AbledPeopleSay Makes You Angry...That's Sort of the Point
BLOG
What I saw
VIDEO
30 Second Message for Bullies
CEO tells Daily Show ‘mentally retarded’ could work for $2: ‘You’re worth what you’re worth’
BLOG
BLOG
What's Up?
POST
"NONONONONONOOOOOO! Delete! Retract! And for the love of all..."

BLOG
BLOG
I am Autistic and I Know what Autism Is
BLOG
Henry & Emma’s Story
BLOG
The Myth of "Overcoming"
BLOG
Autistic people have the same rights as everyone else

January also saw another edition of the T-21 Blog Hop...


This month tied for largest with 25 entries!  Thanks to all who participated.

The T-21 Blog Hop will take place every month on the 21st, for three days and will continue to feature advocacy posts from across the disability community.


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

Thursday, January 30, 2014

What's Up?

"And so I cry sometimes
When I'm lying in bed
Just to get it all out
What's in my head
And I am feeling a little peculiar
And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream at the top of my lungs
What's going on?"
--What's Up?, 4 Non Blondes

I feel like shit.

I've probably listened to The Wall eleventy-teen times this week.   That's usually not a good sign.

In the echoes of the back of my mind, where my critics, both real and subconscious live, there is a little (metaphorical) voice saying "Why wouldn't you be?  Look at your life."

I know.

I work too much, I sleep too little.  I am the sole breadwinner for Team Logan.  I spend my one life, working both days and nights where I wade through the depression, psychosis, mania and addictions of a populace.  I then come home to my other life, my three kids who deserve healthy, happy parents, a clean house and all the attention we can give them, instead of a Mom who just wants to flop on the couch, drink Jack Daniels and play Skyrim.

For the record, I love what I do.  I love my kids, my house, the life that I have built for myself and the people in it.

But.

I.  Feel.  Like.  Shit.

As I looked around bewildered one day through some unprovoked tears, I had to sit down and take a hard look at what has happened in the last year.  I spent several months off and on, in a great deal of pain in the bathroom.  After all the tests, after all the procedures, we still don't know what that was... other than it seems to have subsided in the last month. We still haven't hit the one year anniversary of Wyatt's surgery;  although he is doing very well, that experience still haunts a bit.  Work, school, Christmas, money, family, life... When you break it down along the five axes like we would with anyone else, yeah...  I've got a lot on my plate, man.

Not to put a fine point on it, but right now, my coping mechanisms aren't working too well.  Everybody has them, it is just a matter of whether they are constructive or destructive and how well they work overall.  Coping strategies that are negative for you are pretty self evident:  things like alcohol, cutting, drugs, any behaviour that is excessive and interferes with the normal functioning of your life.  The positive ones are not as fun or have the instant gratification as the other, but have longer lasting effects.  Things like distraction, visualization, exercise, going for a walk, playing an instrument, doing a craft, doing a hobby.  The other addendum to that is that when your coping starts to fail, you really don't feel like doing any of the positive ones any more. 

This blows.  Goats for quarters, even.

Some might readily point to my second born, the one with Down syndrome.  If one were to believe the grief rhetoric that parents have been force fed since... well, forever, his existence is reason alone for me to feel this tired and burned out.  Hell, if I really wanted to, I could blame any sort of thing that I did or felt on his "brokenness".  Don't forget I was warned by professionals that having a child with a disability would break up my marriage.

Um, no.

I'm going to take yet another teaching moment (gah!) and state that I refuse to spin this the other way,  to say that he is my, rock, my salvation with a magical chromosome.  I will say that all my kids, all three of them are the reason that I do anything;  from getting up in the morning to working extra hours to not sleeping, ever.  The idea that one person can cause another's depression is laughable at best and very misleading at worst.  Ultimately, like everything else in life, it all boils down to coping.  How well, when, how in particular and how much in charge you are willing to be of it.  This is not a will yourself out of a rut through the magic of bootstraps thing any more than it is madness, an unspeakable horror lingering just out of sight in the shadows.  It just is.

As a rule, I've given up most of my vices other than the occasional drink (or three) now and again and my Coca-Cola and my coffee.  Oh dear god the coffee.  Music has always been my drug of choice and I utilize it whenever I can.   My sense of humour is also so dark that it's difficult to see most days, but it gets me through.

As I tell my patients, if it's not working, do something else.  I have basically gone from work to home to work and with the exception of a brief trip at Christmas, did not go out at all for months, except for a handful of trips to the grocery store.  It's also minus a million outside and even if I do manage to see daylight ever, it is probably snowing.  So, to offset, I took a little day trip with some girlfriends last week.  At least for a little while, I found a piece of heaven.

But, one afternoon out of 365 is not enough.

If it's not working, do something else.

We frequently re-assess how things are done in Team Logan.  It's time to, once again.  As we do not have a lot of social supports around us and not a lot of opportunity for things like nights off and "date nights" (or hell, "uninterrupted meaningful conversation"), we jumped at a proposal made by Wyatt's worker.  She found a new program through Tourism Toronto that gave parents of children with disabilities a weekend of respite.  Called "Relax, Recharge and Renew", the program utilizes many of the major attractions and hotels in Toronto and creates a weekend away for parents/parents and siblings of the person with special needs.  At first, I was horrified.  However, the more I thought about it, the more I realized, yeah, I do need some respite... 

...From my life, period. 

I do really need a break, from being a parent, as parenting all my kids (like parenting any kids), is hard.  Listening to, assessing and the assisting with the anguish of strangers is hard.  Maintaining a safe environment while still maintaining the privacy and respecting the humanity of a patient is hard.  Dealing with the systemic failures, interdepartmental issues and bullying in a regional hospital is hard.  Dealing with social isolation, dealing with a personality that is very much introverted (believe it or not) most of the time, is hard.  Writing this blog and being involved in the advocacy projects I am in is hard.  Living the double life that my job life and family life are and maintaining some semblance of balance?  Hard.

This weekend is Team Logan's weekend.  From when the car service picks us up Friday afternoon, to when it deposits us back home again on Sunday, we will be hopefully be relaxing, renewing and recharging.  And reflecting and re-evaluating.  And hopefully putting some new plans in place.

To quote Spider-man (or "Spider Ma'am if you happen to be my daughter):  "with great power comes great responsibility".  I lack spiffy powers, but I do have responsibilities--to my employer, my patients, my co-workers and my family and friends--to stay on the top of my game.  I'm not at the moment.  I recognize that and it's time to do something about it. 

I'm hoping this weekend will at least be enough of an interrupt to allow us to make some changes, to allow whatever it is that is chewing my tail to fuck off.  Hell, I'd be cool with 6 hours of uninterrupted sleep, some decent tunes and a good meal.   This weekend appears to be all that and a bottle of wine.  (I'd say chips there but I've eaten far too many of those lately.)

Relaxing, renewing, recharging, re-evaluating.  Yeah.  Sounds just like what I'd recommend.  Life can really grind you down from time to time, even if you are one of the ones that you'd least expect or are well versed or considered the 'strongest' or most brave or some other silly thing.  Lets face it;  there will always be more snow, more bills, more stress, more sleeplessness, more coffee jitters, more trolls, more physical pain, more anguish, more, more, more...  Life is like that.  

Sometimes building a fort isn't enough.  Sometimes you need to step outside, take a deep breath and get some perspective.  

...So I can get back to doing what I love.  

(That may involve coffee and Skyrim too, but you get the point.)

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