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."

--An Anonymous Newtown Autistic

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 Tokenism, Autism-style: A warning to parent-allies too eager to showcase our extraordinary ability:

"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.

Fire, good.

Parley

"Damnation seize my soul if I give you quarters, or take any from you." 

-Edward "Blackbeard" Teach

There is a lot of talking in our house.  It may not seem that way to some, but every single member of my household has a lot to say.  Although BK (before kids) my husband and I would often spend entire days marooned in a book, we would come together and have great discussions about life, the universe and everything (usually after killing a couple bottles of wine).  Our kids seemed to have picked up this torch... which is both a good and bad thing.  If either of us actually have the capacity to finish a thought these days without becoming distracted or frantically searching for a noun to keep our statements from including more than one instance of the word "thing", we're not going be heard anyway.

Take Wyatt for example.  He hasn't looked back after his surgery.  He is still pulling himself up to a stand on every handy surface and pant leg and then learning to cruise around the furniture.  He's a pro in his crib, where he can quickly walk down the length with the barest of hand holds.  During all of this, he is chattering non stop.  He was always a vocal baby, but now the level of communication has skyrocketed after his surgery.  Oh sure, we're still teaching him how to sign, but that is having mixed results.  He knows a lot more signs than he will use and at times I think he relishes this.  The sign for "more" for example, in his mind, is perfectly appropriate when the fireworks are over.  When Mommy is asking if he would like more to eat? No. Not unless dessert or some other particularly tasty morsel is involved and only if he initiates it.  One night not too long ago, I was really pushing the issue (and probably being more than a little patronizing).  "More Wyatt?" I asked, tapping the sign out. "Do you want MORE?" (another sign) while ignoring his attempts to communicate in other ways. Finally after giving me a good long stare he took his right hand, grabbed his bottom jaw and opened his mouth as far as he could.  With his left, he made pointy jabby motions towards his mouth as if to say "PUT THE DAMMED FOOD IN HERE WOMAN!  What don't you understand?!"

So I did.  Can't argue with that.

He's also coming up with his own signs for things.  You will remember that he decided that differentiating between "Daddy" and "Mommy" was pointless, so he would tap the crown of his head and made "parent" (which, incidentally, looks like this traditionally).  His latest is creating a sign for "tickle", where he tents his fingers like Mr. Burns and wiggles them instead of the traditional sign where he would tickle his chin.  The amount of vocalizations and different sounds that he is trying out at the moment is also a little astounding;  I was on my way upstairs to have my nap before my first night shift this week and he made kissy noises by making a fish face.  You can see that he prefers to express himself verbally and I can understand why;  we don't use sign language to talk to each other so why the heck should he?

Our Zoe girl, at the risk of sounding like a gushing parent, is just adorable.  Even when she's being rotten, she's completely edible, which makes being mad at her almost impossible.  She speaks with a lisp and frequently substitutes consonants around.  Her vocabulary is increasing by the day and will occasionally bust out a turn of phrase that has you a) wondering where she heard it and b) laughing hysterically at her timing. When not climbing every available surface, she is charming you with her knowledge on such diverse subjects as farm animals, pirates and cowboys. We were recently at a birthday party and while the other girls were trying to stay clean and out of the rain in their pretty dresses, she was soaked to the skin, her pants solid mud to the knees as she merrily played pirate.  She's recently taken to singing all the time too, which is fun to watch.  She may not know the lyrics, or the tune but she will do her very best to hum along and throw in a word here and there.  She's even starting to show a little musical preference, as I've found her singing along to Stevie Nicks, Heart and Joni Mitchell. (That's my girl!)  I'm not so sure about the Steely Dan, however.

We've had a different kind of conversation with Quinn lately and quite honestly, it's one that I wish didn't have to happen. We've talked about serious things in the past, like prejudice and strangers and whatnot, but none of these have threatened to steal the sunshine out of my son's eyes.  This one has.  We had to talk Quinn about bullying. 

There was a hint of this thing earlier as during the last week of school, I was thumbing through his agenda and found that someone else had scrawled "Quinn is a fatty" and a few other things.  Right now the boy looks like a bag of antlers, so I wasn't quite sure what all that was about.  He mentioned that a few girls in his class didn't like him for one reason or another and quickly changed the subject.  I made a mental note to keep an eye out for further issues in September and we left it alone.  Flash forward to the first week of August when I broached the subject of him going to day camp for another two weeks (he had already gone for two weeks in July) and what camp would he prefer to go to?  He answered my questions by stating that he wasn't sure where wanted to go to, if at all.  I pressed the issue by bringing up the subject of attending the co-ed "Robin Hood" style camp that a few of his friends were going to--now that he's gotten over his fear of accidentally skewering random picnickers during archery practice--and he dropped his eyes and became rather squirmy.  It took us a bit to get the full story out of him, but as it turns out, he was being bullied at camp as well.  I won't get into the exact details of what happened as it is not my story to tell here.  Rest assured that if I had known at the time why he was coming home so dirty, with downcast eyes that he passed off as "tired", I would have played things a lot different (and possibly consulted our local police).  Now that the week was over and that group of boys dispersed, we were powerless to do much except talk to his next leader.  It filled me with rage and shattered my heart at the same time.  It had played out like a classical example; this had not started with physical violence originally but with verbal taunts, the most notably being "gay".  It would start on the bus in the morning, continue all day and not end until he came home.  It did not stay verbal for very long, either.

Last year, when he first attended day camp, he was six and in groups of 5,6, and 7 year olds.  This particular week, he was in a group of 7,8 and 9 year olds and now the youngest in a radically different dynamic.  At the time, Quinn did not know what they meant by calling him gay, other than they were saying something to him that was meant to be hurtful.  He said it they called him this due to his liking hanging out with girls (?!) and for wearing his favorite pink shirt, the one that I tie dyed for him for anti-bullying day two years ago.  This soon escalated into tripping and shoving.  One afternoon, when this group made sure that his neighbourhood friend was occupied on the rock wall with the leader, they found their moment and physically attacked and humiliated him, for being "gay".

I don't know if my son is gay or not.  He's seven.  If he is, I will be Grand Marshall Mom at Pride.  Regardless, he is a gifted, kind, generous boy who spent the better part of a year holding an anxious girl's hand at recess to make her feel better and playing "Bob Hope" to a classroom of drowsy students to keep them from completely tuning out, long after he should have done just that. 

He is artistic.  He is musical.  He is a scientist. He is my son and is only seven years old... and some shithead bully kids with even shittier homophobic bully parents, decided to work out their rage about their shitty, angry lives on him.

My husband and I sat down with him.  As my heart physically ached, we were supportive and listened to what he had to say.  We then took turns talking to him in little sessions over the course of a week.  We talked about bullies, we talked about why they do what they do.  We explained that this was learned behaviour and it was never acceptable.  We talked about how yes, you do need to tell someone and quickly, but that also includes us, not just a teacher or leader.  We role played with him a bit, showing him how to spar verbally and how to end such a conversation while still standing up for himself.  We also talked to him about what being gay was, how that is only an insult if you are hateful. We also told him that, as is often the case with bullies, those boys were so ignorant that they didn't even know what the word they were using meant.

We also talked to him about physically standing up for himself and when that was appropriate.  I agonized over this one as I do not wish my son to become a bully any more than I want him to become a suicide or self harming statistic. The reality is, he may have to push back, he may have to punch some kid in the face as a last resort.  During all of our talks, we stressed over and over and OVER to him that we would ALWAYS love him and would ALWAYS listen to him.  We would always back his play as well, regardless of what anyone else would try to tell him. 

There is a happy-ish ending to this story however.  He's back at day camp this week with a whole new group of kids, in a group that is 6 and 7 year olds and those older boys are long gone.  It is "Pirate Week" there.  He is coming home with the requisite amount of dirt for a boy his age and is happy and smiling again.  He has agreed to go to the co-ed camp for his last week there, now that he is sure that being around girls won't "make him gay".  His self esteem is much improved and he has been bolstered with his new knowledge.  School starts the day after Labour Day here, so it is just a few weeks before we see what this year will bring.  Hopefully by then this ball of fear in my chest will disappear.  I wish I could shake the feeling that it is here to stay.  This particular discourse will not end here, as there never seems to be an end to the bully supply. 

Between work and my online efforts and my family, it seems some days that the dialogue never ends.  It's no wonder that I sometimes look forward to the kids' bed time or quickly switch the squawking talk-radio  that my husband prefers to a music station.  It's a lot for me to process at times.  But, we have some great things in the wind.  The conversation is just getting started here;  as time will go on we will talk about a lot of things that will be difficult.  There will be a lot of teenage angst, there will be boyfriends and girlfriends and all sorts of life events to explore.  Right now I'll revel in my daughter's "Wook!  Pie-rats!  Yaaar Matey!  Ahoy dere!" and Wyatt's backing "Yaaaaa!" and Quinn's resulting eye-roll.  There is never a dull moment with this bunch.  We'll be sayin' our piece, right and plain, for manys a long day to come.  Parley or parlez as it was originally, isn't just a guideline here.  It's a way of life. 

Yo ho.

None asked, none given.

Balance

"The road to hell is paved with good intentions."

-Proverb

I was reading something the other day that stated it takes, on average, 17 years for a new medical procedure or concept to be put into universal practice.  That's a long time in human years, I thought. 

Since I come from a medical background, it should be no surprise to anyone that I think in mechanical, medical terms.  A is not working well, so B must occur to return things back to normal.  Over the years medicine has become a little more open to the idea that normal is, well, not always average, so we've altered that mindset towards achieving one's baseline.  Everyone has a baseline that is unique to him or her.  That particular idea took some time to kick in as I remember running across it in Nursing school.  It's in practice today, 17 years after I graduated.

You can imagine then, once I realized that I was navigating the waters of I-have-a-son-with-Down-syndrome, how I felt when I learned that most of the society's current assumptions about DS are medically based...

(Yay!)

...and totally wrong.

(Dammit!)

So very, very wrong that it hurts both my heart and my brain to think about it.  Most of the "common knowledge" about DS is not 17 years old, or even 30... it's more like 50+.  That's an awful lot longer in human years.  Despite all the ads and cute pictures of smiling children and promos and things that are done to "spread awareness", people still believe that having a child with Down syndrome will ruin their life.  Society-at-large still believes that DS is a disease that people suffer and that people with it are sick and unhealthy in general.  Mild to severe are still seen as appropriate ways to define one's functioning.  We still cling to the notion of an "Intelligence Quotient", where a quantitative value is assigned to a qualitative concept.  Despite this number not being able to tell you if a person is able to attend to the activities of daily living, people still use this.  It helps when segregating the other.  It sure did at Ellis Island, when it debuted...

But WHY is all this information so out of date?  Why is society more apt to adapt to the idea that placing a tree directly across from your front door is bad feng shui, but that treating all people as equals, as fellow humans is about as foreign as algebra is to a pelican?  While writing my A Brief History... posts, all I could think about was the persistent cycling;  there have been numerous times in history where people with DS stopped being the other and for one brief second, almost became just another flavour of humanity.  Then, as predictable as ever, the dreams of a post-scarcity economy evaporate due to a down swing or a war and Sha-ZAM!  People revert back to the middle ages.  It's once more "root hog, or die" and those that we briefly flirted with are once again the outsider.  We're doing it again, in case you haven't noticed. 

"WHY?", is always the question I ask myself.  Why must we do this dance every couple of generations?  Why must we have only a little forward movement, a little bit of enlightenment and then backslide?

Well, the answer is simple in it's complexity.  We, at least in the Western world, ultimately fear and despise difference. 

We are chock-a-block with privilege.  There are many forms, many shapes at play here in our culture.  There is white privilege and skinny privilege, male privilege, big breasts privilege and the list goes on.  People can readily point to one or two of these things that have impacted them directly.  One of the least understood is the privilege of the able. 

And, it's a biggie.

It's so big, the roots go so deep that you don't even know that they are there.  But they are, lurking under every conversation, every decision.  Like some kind of giant underground fungus.  Ableism isn't just a specific deed here and there, it's one of the foundations that our society is based on.  <*shakes fist at Aristotle*>

It wasn't until my friend Extranjera pointed me towards The Rhetoric of Ableism by Cherney that I finally said "Ah-ha!". The answer is not so much a "why" but a "how".  How does this keep happening?

Our language, the medium through which we navigate through this world, is inherently the problem.  Yes, we can all point to the phrase "I see" as being ableist in terms of those who are blind, true, but it's bigger than that.  It's the larger assumptions over there in the shadows that are really the source of all of this.  They are statements like:

Able is healthy
Able is normal
Normal is natural
Able is good
Body is able
Able is educated
Able is well off
Able is well-born
Able is better off
Able is culturally acceptable/dominant culture/polite society
Able promotes positive family relationships

And, with this:

Disability is sick
Disability is not normal
Abnormal is unnatural, inhuman.
Disability is bad, evil
Disabled body is broken
Disability is uneducated
Disabled is poor
Disabled is base-born
Disabled is worse off
Disabled is ethnic, not acceptable in this culture/polite society
Disability destroys families

These are just a sample, but are the type of assumptions that underlie the way we look at those that are different than ourselves.  Especially people with intellectual disabilities.  This is the rhetoric that I and a few others have been on about.  Ultimately, we in the Down syndrome community can have all the positive pics and feel good things we want, but to paraphrase Denis Leary (badly), we can have a giant kumbaya cake walk through the middle of the town square and it ain't gonna make a lick o' difference until we realize that as a society, we suck, okay?  We are all guilty of this, no matter how well meaning.  To those with actual disabilities, we parent advocates really don't have a clue and more importantly, don't seem to want to.  We are simply, a bunch of dicks.

We have to change that.  We all have to work together on this one, parent and self-advocates alike.  We have to change the rhetoric, the assumptions in our language to things like this:

Disability is natural
Disability is normal
Disability is universal
Disability is good
Disability is welcomed

Then hopefully, it will end up looking something like this:

All are natural
All are normal
All are good
All are welcomed.

Some of us are in ableist rehab and that's ok.  I'm one of them, which you know if you read [R]Evolution.  I have been a deluded individual in regards to those who are differently abled most of my life, mostly due to my privileged culture, but also due to the aforementioned medical terms through which I operate.  There wasn't a flash of insight from the gods when I had my son either... but it is through the patience and writings of many an advocate, self and otherwise, that I finally began to comprehend and move forward.

How do we do that then? How to we change thousands of years of underlying ableist metaphors?

One, we have to self-reflect, examine and then change ourselves.  How do we really feel about people with intellectual disabilities?  About our kids with developmental delays?  Do we see them as broken?  Not quite right?  Lesser?  A challenge?  (To who?  To you?) It's only going to go downhill from here? How about the other way:  are they somehow superior to your other children?  Blessed with preternatural powers?  Is that extra chromosome made of anything other than genetic material?  Do you see those with Down syndrome as anything other than an equal, than human?

Then you too need to enter rehab, my friend. 

Two, we change our practices.  Are we perpetuating othering?  Are we putting people on a pedestal?  I read this story about sexism at a blog conference and let me tell you, even though the perpetrator is not demeaning women in the traditional sense, his comments are still sexist.  In the same vein, depicting people with developmental delays as anything other than, well, people, is still ableist.  "Benevolent ableism" or "Pedestal ableism" is still ableism.  All the precious-angel-inspiraporn out there, I am looking at you.  Please stop.

It's this thinking that has me looking at things like my strap line on the blog "my kid has more chromosomes than your kid".  It's got attitude, sure, but is it ableist?  I'd really love to change it to "all our chromosomes are f☠☠king awesome" or "Team Logan:  Hell yeah!", but somebody would complain about the swearing.  In any event, I'm not sure if it is ableist or not, but it does have me thinking about it.

We also have to take a hard look at our views on inclusive education.  It is what should be done, period.  From kindergarten to graduation to even college.  No exceptions.  I don't accept the alternatives as better for anyone.  All children have the ability to succeed to the best of their own ability.  When they are not, it is our responsibility to ensure that they do.  Why is the child not succeeding?  If that means more aides or tutors, then so be it.  If it means challenging traditional approaches to education, if it means forcing the program to fit the child rather than the other way around, then do it.  Do what has to be done.  No child left behind means NO CHILD.  Not a single one, wherever they fall in the neurodiversity spectrum.

The notion that having a child with Down syndrome will plunge you into a deep depression and ruin your family has got to stop.  This is the kind of stuff that was perpetuated to promote the asylums and the institutions.  This is the story told by every doctor, social worker and health care professional since... well, they are still doing it.  It isn't true.  I'm not going to deny that there are a lot of angry, unhappy new parents out there.  Why is that, other than the perpetuation of the "disability will destroy the family" rhetoric?  If you've already been there, examine your feelings at the time.  I mean really look at them.  Is it possible that you are attributing to DS something that belongs elsewhere?  Flip the script and make sure that the supports are out there ahead of time for new parents.  If you were misinformed and didn't have a good go initially, why would you want to pass that on to someone else?  Change the rhetoric and in the mean time, don't feed it.

Step the third: Look around us and start to challenge the "norms", the stereotypes. It doesn't mean being negative or mean, but it will mean growing a pair from time to time and calling someone out, even though you may be a bit nervous about it.  Be polite, be appropriate.  Do whatever it is you need to do to get it done, but do it.  This also means that you don't have to like every organization that affiliates itself with special needs or Down syndrome.  If you don't like their practices, if they do not meet your needs or champion the rights of those with DS, do not support them.  Don't share their memes or support them with money.  It's really that simple.  Challenge paternalistic caregivers, encourage medical practitioners (and everyone else) to embrace the social model of disability.

If we stand any chance of preventing this and this from happening again, we need to make some changes.  In order to keep the Amelia's of the world from receiving substandard medical care, we need to rethink this whole thing.  We need to encourage those that have the means to create community supports so that the developmentally delayed are not 'housed', but live independently, or where they choose to live (with minimal assistance).  We need equality.  We need acceptance and inclusion.

We need to stop swinging the pendulum back and forth and just have balance.

---

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In the News - July 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and awareness.  In July, there were many developments with the Ethan Saylor case and many posts fostering dialogue on disability, advocacy and ableism.

Legend:

AUDIO	indicates 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	On Being Ground Down
	Oliver Hellowell - Portfolio
	Murder and Hate Crimes: Part II
LINKS	EveryBody: An Artifact History of Disability in America
BLOG	A Jerk with a Halo and Some Shabby Wings
BLOG	Wordless Wednesday: Summer Kisses
BLOG	The Faint Stirring of Revolution
	Four Hard Things About the Fourth
BLOG	Cycles
LINKS	The Crisis in Pain Control for Children who are Complex, Non-Verbal, or Cognitively Impaired
BLOG	About Grief
	Research update: new therapeutic target
	What happened to Robert Ethan Saylor?
BLOG	Picking Rocks
BLOG	A Quote from a Conversation
BLOG	Down Syndrome, Science, and Mystery
BLOG	Defending The R-Word Defending the R-Word
BLOG	Eugenics and Disability Discrimination | Disability & Society (1994)
BLOG	We Are Like Your Child: The Blog
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 Collin Brewer Officially Resigns
BLOG	How one Autistic person dealt with meltdowns as a child: On letting it out
	How to Interact With People With Disabilities
	Legally sterilizing the vulnerable
	The Ruling That Could Change Everything For Disabled People With Million-Dollar Trusts
	Carlow VS bans student from school because she has epilepsy
	Germany memorial for Nazi 'euthanasia' victims
BLOG	A Year Ago Today, or Letting the Past Person You Were Deal With Her Shit
BLOG	Forgiving Myself but not Forgetting
BLOG	Beauty in Being
	Plans to means test for disability care unveiled Like A Person
BLOG	When You Carry Your Difference On Your Skin
	Doctor who defined Down's Syndrome finally recognised in his home town
BLOG	Our Collective Voice: #JusticeForEthan
BLOG	[R]Evolution
	Saylor report: Deputies said they did 'nothing wrong'
LINKS	The Guide to Talking About Down syndrome
STUDY	Researchers turn off Down’s syndrome genes
LAWS	Law labelling disabled as ‘lunatics’ to be replaced
BLOG	The state of my advocacy. Or reflections on plants and outrage.
	Questions haunt family of man with Down syndrome who died in police custody
BLOG	The NYT Infuriates Me
EVENT	On The Radio - Blog Announcement
BLOG	Care
BLOG	Dear Mama, Let’s Talk About Me.
BLOG	A Brief History of Down syndrome - Part 1: How Down syndrome Got its Name
	Report: Supervisors justify force used in Saylor case
BLOG	Bull's Eye
BLOG	A Brief History of Down Syndrome, Part 2: Before John Langdon Down
	Justice Dept. probes civil rights of police-custody death of man with Down syndrome
BLOG	Tokenism, Autism-style: A warning to parent-allies too eager to showcase our extraordinary ability
	DOJ Examining Disabled Md. Man’s In Custody Death
	Mom of man with Down syndrome talks about his death in Maryland cinema
BLOG	Yesterday and Today
	Physical Disability Bingo
BLOG	A Brief History of Down Syndrome - Part 3: All In the Family
	Virginia woman with Down syndrome seeks power to control her own life
BLOG	A Brief History of Down syndrome - Part 4: The Roots of Institutionalization and Eugenics
	The Lone Ranger hit by protest over cleft lip
BLOG	3 (21) Down Syndrome: Blog Hop!
BLOG	A Brief History of Down syndrome - Part 5: From Education to Eugenics
VIDEO	‘Can You Have Sex?’ Guess Who Hates Hearing That Question The Most?
BLOG	What Makes One Who They Are?
BLOG	What Does 'Fair' Mean When One Son Has Down Syndrome?
BLOG	A Brief History of Down syndrome - Part 6: From Eugenics to Extermination
BLOG	Dear Mouse: We Had The Talk
	A Few Notes on the Invisible
BLOG	Jacqueline Koyanagi: Autism Spectrum Disorder, Fibromyalgia, and Invisibility
BLOG	(3) on the 21st
BLOG	Love Unbroken
VIDEO	Sarah Cooley Talks About Her Book
	Delta Wasn't Ready When He Was
	Friday July 26th marks the 23rd Anniversary of the Americans with Disabilities Act!
BLOG	Ode to the Stim
	From Rain Man to The Bridge -- the art of Aspergacting
CASE	Classaction:  Huronia Regional Centre
BLOG	Does My Presence Offend Your White Able-Bodied Male Privilege?
	Disabled Girl Turned Away from Museum Because Her Wheelchair Might Get the Carpets Dirty
STUDY	Looking into Language: A Study of How Medical Students View Disability
	10 Things I Wish Were Different About the ADA
	Left out: the authors who know disability from inside
BLOG	Believe and live
BLOG	What do we Lose if we “Cure” Down Syndrome?
	Read the Self Advocate Resolution
	Putting disabled in nursing homes is both costly and inhumane
BLOG	New Diagnosis; New Therapy (Part 1)
BLOG	Identity Crisis
BLOG	On "Treatments" and "Cures".
	Jenny Hatch's courtroom battle continues
BLOG	Belonging, Inclusion, and Prejudice
BLOG	The Problem With Down Syndrome: Part 1
	The Most Powerful Advocacy Tool For People With Disabilities
BLOG	Two Reasons
BLOG	Hiding Under Tables and Pouncing on Mama
	Wheelchair user banned from grocery store after confronting illegal parker
	Does Goodwill Industries Exploit Disabled Workers?
	Educating Children with Disabilities of their Rights Using Digital Talking Books

This month:

In July I published the next installment in my (increasingly inaccurately named) "A Brief History of Down syndrome".  This chapter involved the institutions and was very difficult to research and write.  It seems that many people would just like this part of history swept under the rug and "best forgotten".  I disagree, as it further demeans the lives of those that were locked away and suffered so much horrendous abuse.  Our job is not finished either;  there are still regional centres in North America and young people with disabilities are being shut away in nursing homes.  It is heartbreaking to read, but it is reality.

A Brief History of Down syndrome - Part 7: Abused, Neglected, Forgotten

I have continued to fill out our home on Tumblr:

Downwitdat.tumblr.com

...and have "rebooted" our discussion group on Facebook. 

Down Wit Dat - Down syndrome Discussion and Advocacy

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