The New Face of Advocacy

I am an advocate.

I know, I know... I've only been doing this for a little over two years, a fact that gets pointed out to me a surprising amount, actually.  However, the thing with civil rights is this:  it doesn't matter how long or how hard you've been advocating, but that you've been doing it.  Period. There is always a person or organization that feels that one group is less than another;  that is certainly the case when you look at Down syndrome.

When I was a kid in the '70s (back even before "Awareness" was de rigueur), if you were raising funds, you went door to door.  You talked, face to face to the people in your community, you handed over petitions for your neighbours to sign.  We had to do that once, not for DS (as those children were hidden away then), but for safety. The house I grew up in is located at the top of a hill on a sharp 90 degree turn.  Drivers would gun the motor at the bottom and would be going full tilt by the time they reached the crest and then they'd hit the turn.  Not surprisingly, as this was in the days before MADD, many people--especially in the winter--would not account for the turn and end up on our front lawn.  During one afternoon storm, my brother and I amused ourselves by counting the cars as they came crashing over the curb.  There were 19.  Every spring our front lawn was a disaster.  We would collect the hubcaps and line them up for their owners to retrieve them.  What we should have done is nailed them to the fence as a warning, but hindsight is what it is.

My parents took up a neighborhood petition and took the problem in front of the city (then "town") council and got a stop sign put up halfway up the hill.  That slowed the drivers down for the most part and we could stop fearing the day that we'd end up with a Buick in our living room.  Today it seems very simple, it is an issue of child safety.  Then, well, it was a big deal then.  No one cared about the two kids living in our house (or the two adults either).  Or the other children that came over to play.  In fact, there was some push back, as there always is in matters of bureaucracy;  I can't quite remember what it was exactly, but one of the Town Councillors felt that traffic control was pointless and the funds for one stop sign would be better spent in Bramalea (a then-growing part of Brampton that he represented).  Various arguments were presented, I think just for the sake of creating discussion and justifying salaries.  One Regional Councillor argued that it would cost the taxpayers too much in gas to stop and start again.  Driver education was also mentioned at various points.  But, we stood our ground.  Sure, people looked at us a little weird and grumbled as they stopped at the new stop sign.   But, we did it and it happened.  No cars ended up in our living room, our lawn remained green and my brother and I managed to grow up and make it to adulthood.

Petitions, leaflets, posters, marches, protests, picketers.  Those was the vehicles of advocacy that I knew growing up.  All very structured and organized and a lot of legwork.  Growing up in a trade union family meant I was exposed to that at a tender age as well.  I'm also old enough to remember the last dying days of the Vietnam War on the news.  I was in university during the Gulf War (Iraq the first) and there were protests everywhere.   There were bomb threats called in to the university daily.  This was also in the early days of GLAAD, of the inclusion movement.  Macedonian students clashed with Greek students.  It wasn't a pretty time then either.

So, it's not that surprising, that me, a union nurse who has now moved to another area of suburbia (not Bramalea) in this now cosmopolitan city, is advocating for something she believes in passionately.  My youngest son, one of my twins, has Down syndrome.  To myself and Team Logan, it's not that big of a deal.  However, it is to a lot of people.  There are still a lot of people who see my son as not quite a person.  As a freak, devoid of consciousness and meaningful thought, who looks exactly like every other one of his kind.  As someone who has no right to be here (and no rights while he is here).  As a result, he and those with Down syndrome are marginalized, not only by the general public, but by those that make our laws, those that uphold the law and those that are charged with his physical and mental welfare.  Hell, even by some in the greater Down syndrome "community".  It's not just his civil rights that I have to strive to protect, but his human rights.

Once I decided to throw my hat into the ring, I looked around at what was to be done.  There are a lot of Awareness Campaigns and awareness is a good thing.  However, I quickly grew tired of awareness, especially when you had people wearing the T-shirts or the bracelets and calling their friends [the R word], or organizations that claim to advocate, yet really don't do much of anything other than raise funds to pay for the next fundraiser.  It was very frustrating, finding myself in a sea of awareness, yet constantly having to explain my son, his medical history, what that means, what that means to us to every Tom, Dick and Harry in the Doctors office, in the grocery store and everywhere else.  I did this for the greater good, in the name of Awareness and Education.  It was bad enough being (practically) asked for my gynecological history by perfect strangers (in regards to the twins)... but throw in a little chromosomal fun (other than my olive complexion and my husband's gingerness) and all semblance of social limits are thrown right out the bloody window.  Different.  Other.  Unworthy.

I turned to the new frontier of advocacy and activism, the internet.  In this, the information age, we all have blogs and Facebook and Twitter.  Through social networking, thousands of parents like myself have come together at various nexus points to talk about our kids and what the future holds.  Thousands of self-advocates, adults with DS, are doing the same, networking and shaping the world around them.  In fact, I had never heard of twins like mine until I found a whole online group of parents of multiples with DS.  Instead of a handful of parents in a local community meeting for coffee once a month, thousands upon thousands of parents, advocates and self-advocates have the potential to meet daily.  In an instant.

It is all very exciting and terrifying at the same time. 

This brand of grassroots advocacy is something that I can do a great deal of, a little at a time.  I don't have large blocks of free time with the demands of my family and my shift work job, so I can do a little here and there, any hour of the day or night.  Which is awesome, as I get to talk to so many people in so many different time zones.  Social media has made our world smaller;  advocacy has now gone from local to global.  I can spend a few minutes when I can, to share my thoughts and experiences or bolster the spirits of another who is having a hard time.  I have been able to help edit publications for Down Syndrome Uprising on the bus in the morning.  I've advocated on break at work, setting up my laptop and writing when I can.  Instead of reading the paper in the morning (does anyone actually do that any more?),  I check the news online.  I check Twitter, I check my Facebook account, group and pages (both Down Syndrome Uprising and Down Wit Dat).  I have blogged and shared news articles while tandem breastfeeding two babies. I have fielded emails with journalists while at pre-op appointments for my son's heart surgery.  I have reached out to countless others from my son's hospital bedside, speaking out against injustice while the morphine dripped in his veins.  Even something as monumental as Wyatt's surgery has not stopped me.  This life event, this period of my life that was so stressful as a parent, is peanuts compared to the struggles of others.  The entire time, I continued to work, cognizant of the fact that not so long ago, Wyatt would not have qualified for this surgery as he had DS; he would not have warranted the medical care that another child would receive without question.  Advocacy changed that.

Anyone can do this as well.  No longer is advocacy solely in the hands of those that get paid to do it or a select few that have the "right look" or the "right feel".  We fight for acceptance of our children, stopping for nothing other than total inclusion.  We have our detractors too... we get called "Mommy Bloggers" and because we choose to use a medium that teenagers also use, because we are not paid by larger organizations or mainstream media, we are easily dismissed with one jaded wave. 

But, as those groups are figuring out, we are anything but easy to dismiss.

Social media has allowed me to connect with family and connect with friends, new and old all over the world.  I'm no longer alone.  I'm no longer the one in a million who has fraternal twins, one of which has DS.  I'm no longer one in 700 mothers.  I am amongst thousands.  Advocacy is no longer a "March on Washington" or on Capitol hill in Ottawa.  We are marching, daily, as we wait for the coffee to brew or the dryer to finish or yes, even in the stolen time in the bathroom.  We do this daily, within seconds.  The face of Down syndrome advocacy, much like the community itself, is growing, evolving. No longer are we trying to change our little corner of our community, to "fix" our children or hammer a square peg into a round hole.  We are trying to change the world.

One tweet, one post, one comment, one update, one petition, one share, one vote at a time.

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Make World Down Syndrome Day a Day of Action

Thursday is World Down Syndrome Day.  It is a day of celebration and of recognition.  It is also a day of global awareness.

Honestly, I've about had it with awareness.  I'm done, finished.  Most people are aware of Down syndrome by now.  They may not know exactly what is involved and may be very prejudicial as they base their opinions on outdated and incorrect information.  But, they know it exists.  Instead of having yet another day of awareness, I'd like to make World Down Syndrome Day one of remembrance and action.

Several things have weighed on me in the last little while.  The first is a doll, made by a mother of a 13 year old girl with Down syndrome.  They are called "Dolls for Downs" [spelled incorrectly].  The idea here is that "every child wants a doll that looks like themselves." 

I don't agree and furthermore, I am uncomfortable with these dolls in principle.

Firstly, I dislike anything that has the potential to perpetuate the stereotype that all people with Down syndrome look the same.  They don't.  My son looks like the rest of my kids;  an amalgam of mine and my husband's family.  He does not look like these dolls any more than any other child with DS that I know personally.  I find the description of "pudgy features" in the video to be extremely offensive.

Additionally, like the bald barbie debate for pediatric cancer patients, I'm going to take the stance that my son does not need this doll.  He does not need another feel good, "isn't that cute!", soft focus awareness campaign (which is what this doll will surely turn into).  He needs a medical profession who gives a damn.  He needs a society that is tolerant and accepting of neurodiversity. He needs an education system that will not decide his future based on bureaucracy and preconceived notions.  He does not need a doll whose proceeds line a private pocket, like most "awareness" paraphernalia does.

While I'm on the subject, people with Down syndrome are often under-treated and marginalized by the medical community.  Don't believe me?  The Special Olympics has the largest database of people with Intellectual Disability/Developmental Delay that there is and as it turns out, most of the athletes are lacking medical treatment of some description.  According to  the Special Olympics, 70% of athletes are overweight, 35% require vision care/new glasses, 30% have severe hearing impairment and 24% have untreated dental decay, just to name a few things.

I also cannot tell you how many stories I have heard of physicians and other medical staff dismissing a mother's concerns or simply shrugging something off as "it's to be expected".  There is the assumption too, that a person with DS is somehow a lesser human being and therefore not worthy of care (that would be, presumably, better spent on a "normal" person).  We need to stop denying surgeries and life enriching treatments to people with developmental delays.  We need to stop expecting the worst and completely disregarding people when we hear "Intellectual Disability" or "Developmental Delay".  We need to stop walking in with preconceptions and make accommodations on a person to person basis. It's not that hard, really.  However, I might as well be speaking ancient Greek to most people to whom I bring this up, as outdated, paternalistic practices run deep within medicine, our education systems and in the general public. 

Instead of chalking untreated symptoms/conditions up to "the suffering of Down syndrome", we need to call this what it really is:  neglect. 

I'm also done with "inspira-porn".  We see this stuff every day, especially in the vein of promoting awareness. Cute kid pics, fun sayings.  People with DS in the news, whether attending a prom with a (gasp!) "normal" person or doing things that everyone else aspires to do/does without thinking is not news.  I've recently had to take a hard look at what I am sharing on my Down Wit Dat Facebook page.  Who cares, if a star has a friend with Down syndrome?  Why is "your prom date with DS" news worthy?  We have to stop being satisfied with the "Down syndrome folk in the paper!" mentality and look at why we think this is significant.  Why are we perpetuating this?  Instead of being continuously starved for positive portrayal of people with Down syndrome, we need to change how things are done in the first place.  We need to create a world where this is all very commonplace and and no more worthy of airtime than anything else.  We need to stop sharing things that make us feel good initially, but have little impact on the world outside of the DS community itself.  Why is it only "feel good" stories of proms and basketball games and Academy Award nominees and dolls and similar things make the paper, but actual issues do not?  Stop with the inspira-porn, stop with the fluff.  It's a negative coping mechanism at best and selling our kids down the river at worst.

Alongside run the good intentions;  he or she may in fact "mean well", but they are not doing anyone any favors.  I know you "don't mean it that way" when you drop an R-bomb, but that does not mean I have to accept or even entertain the content of your speech when you are being a bigot.  There is an old saying that applies here:  "the road to hell is paved with good intentions".  Good intentions don't further any cause and in fact only serve to hinder ours.

I am still struggling with the death of Robert "Ethan" Saylor (captured excellently by atypicalson's post).  In the event that you are unfamiliar with the case--as it has not received the same level of airplay as say, a fun picture, prom story or a doll--Robert went to a screening of Zero Dark Thirty and enjoyed the film so much that he wanted to stay and watch it again.  Robert was (past tense) a man with Down syndrome who refused to get out of his seat after the movie ended.  His worker had reportedly gone to get the car.  When the theater staff were unsuccessful in convincing him to leave, they called in three off duty police officers who were moonlighting as plainclothes security at the mall next door.  By all accounts, Robert was a loving man who looked up to police officers.  Instead, what he got were three, authoritative looking men demanding that he leave.  The worker returned and tried to get to Robert's side to hopfully de-escalate the situation and was denied entry.  When he refused to leave and began to swear at them,  they threw Robert to the ground, face down, and handcuffed him.

Where he died.

Ethan died due to positional asphyxiation.  By all accounts, he coded on the floor right there and all three sets of linked cuffs were removed after the ambulance was called.  CPR was initiated, but he was later pronounced dead in the local hospital.  He died, this son, over a 12 dollar movie ticket.

I am tired of hearing "there is more training needed" in response to this story.  I know a lot of police officers.  They all know about positional asphyxiation, as does any psych nurse, any of the security guards that I have the honour of working with and any person who is trained to use any method of restraint.  I think officers everywhere should be outraged by this as well, as it puts them all in a bad light and perpetuates the stereotype of The Thug in Uniform.  I am sick of hearing "tragic accident" in reference to this story.

Let's call it what it really is:  homicide.

Ethan Saylor was killed by ignorance, by impatience and quite possibly by arrogance.  He was killed because they only saw 'Down syndrome' and they did not want to waste any more time on him.  He was not in a state of "excited delirium", he was not delusional.  Instead of taking a little extra time, the off-duty officers took the easy way out and took Ethan down.  I wonder how long it took them to notice he was in trouble.  I wonder how long it was before that knee came off the back of his neck.

The official party line of course is that "police officers don't get training to deal with Down syndrome".  That is, if you pardon the pun, a complete cop-out.  Officers get a lot of training, especially when it comes to de-escalation.  However, these three decided to go the other way in this instance and being very knowledgeable of exactly how much force they can use and get away with, they employed that method instead. 

Ethan died.  Over twelve lousy bucks.

It is of little comfort, but these three may not get away with it.  After days of deliberation, Ethan's death has been ruled a homicide.  After being allowed to return to regular duties for a few weeks, all three officers are now on administrative leave.  Even though they were employed privately as mall security guards at the time, they were still able to invoke their police privilege of not having to provide statements. 

I'm not hearing a lot of outrage when I come across discussion of this story and this upsets me even more.  I hear sadness and theory, not the white-hot anger it deserves.  I see my son, in a few years time, being stubborn like his mother and dying because of it.

We need outrage.

We need to change the system, to show that brutalizing and victimizing people with Down syndrome and other Intellectual Disabilities/Developmental delays is not acceptable.  People with DS are statistically at higher risk to be victims of assault and abuse.  It is completely inexcusable when this occurs at the hand of one (or two, or in this case three) who have sworn to Serve and Protect.

So this Thursday, on World Down Syndrome Day, instead of promoting awareness, I and others like me will instead be taking action.  We are asking no longer;  we are demanding.  Fairness.  Equality.  Inclusion. 

Now.

Take action.  Speak out against the violence perpetrated against those with ID/DD's including Down syndrome.  Speak out against outdated, paternalistic practices by both Medicine and Education.  Denounce stereotypes, the promotion of hatred and yes, even (and especially) the R-word. Remember Robert "Ethan" Saylor and all victims of violence, of discrimination and neglect.

We need action.  That's the type of awareness I want to promote this World Down Syndrome Day.  It seems a lot more important than wacky socks.

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The Cat in the Corner

With each moment, we draw closer to Wyatt's big day.  We use terms like "repair" and "procedure" and all sorts of sterile clinical things... but it doesn't change the fact that he is going to have open heart surgery.  In a handful of weeks, the day--that we have known about since his in-utero AVSD diagnosis at 30 weeks--will be here.  There is a wealth of emotion that I am trying to process; I would be lying if I said I was looking forward to this.   I haven't been myself, my sleep is interrupted (even more than usual) and I have been unable to write more than a few words.  There is no sense of impending doom, I don't want you to get that impression.  However, there is a tension in the room, a watchful waiting.  I can feel it there, sitting in the corner... with it's paws crossed and amber eyes gazing expectantly.  Only the barest twitch of tail announces it's existence, but it is there. Waiting.  Whether to pounce or settle to slumber, I cannot be sure.  But, it waits.  Patiently.

I have been going about my life in defiance of this new visitor.  Routine is maintained.  Groceries are bought, homework is done. Alarms are set, alarms go off.  The kids themselves are in good spirits and aside from another bug that has invaded our happy home (codename:  "Cough Until You Puke"), it is business as usual with them too.  They continue to grow and develop and surprise me at every opportunity.  Although I haven't given an update since before Wyatt and Zoe's birthday, all has been well with my three little minions.

Quinn continues to exhibit an intelligence that is very much beyond his years.  His easy grasp of complex concepts is only outdone by his sense of humour.  He was hit particularly hard this week by our newest virus, but has rallied just in time for March break.  His understanding of anatomy and physiology continues to astound me as he continues to ask questions that have me stopping to think.   Earlier this week, one of the fans on Down Syndrome Uprising posted a link to a nursing based page that had posted what they had supposed was an anatomical diagram of DS (which was more of a horrible caricature with misleading information).  As an added bonus, there was a caption encouraging 'shares' to bring awareness to "the devastating effects of Down's Syndrome" (spelled incorrectly).  The page itself smacks of "like farming", but the image was awful and many wrote to protest, including many that said they were nurses.  It was all a bit disheartening after a long day of actually being an RN and I was unaware that my eldest had seen the image until a voice spoke at my elbow.

"What is that, Mom?"

"It's an old diagram of Down syndrome" I told him, flatly.

"Really? That doesn't look like Wyatt.  What is all that stuff [in the middle]?"

I started to explain that the picture was trying to point out some of the things that could occur with Down syndrome and halfway through, he interrupted me;

"Why does it all look like that?  Why does the face look like that?"

I tried to explain that they tried to put a whole bunch of "symptoms" on one diagram.  He wasn't buying it.  His brow furrowed and he stopped me short with the following:

"But Wyatt only needs his heart fixed and then he will be better. That is not right. They should not say all that.  It's not right."

I gave him a huge hug as my eyes welled up.  My six year old can grasp in a few seconds what it is taking adults decades to get their head around.  Health teaching needs to be fair and balanced, not angled to be as grotesque as possible (or even worse, completely insubstantial).  That starts with teaching health practitioners correctly in the first place. He gets it and he's only six.  I can only imagine what else he is going to understand in the future. 

We try to find little things for us to do together, which doesn't always work out with our schedules.  Quinn and I have a project coming up that will hopefully sprout seedlings for our garden this year.  I can't tell you how much I am looking forward to this.  We're recycling Coke bottles for self watering planters, so it should be a fun little science experiment.  Botany, physics and ecology all in one lesson, what more could you ask for?  If all goes well, we'll get to (literally) eat the fruits of our labour later this summer.

Zoe just keeps getting funnier.  One of her latest endeavors is learning the 'spit take'.  She would take a long haul on her juice cup and then mist it out in a giant raspberry and laugh hysterically.  I thought it was funny the first time, until Wyatt started to imitate her a moment later.  They went back and forth in a flurry of 'thhhhppppttttthhh!' as they, the floor and everything around them slowly became soaked with juice.   It's happened a few times since then and I have to stop her as she starts up, or it becomes a spit take-one-upmanship contest that only ends when the ammo runs out.  She'll then declare the whole thing "AWEthome!" and move on to her next demolition project activity.

Wyatt's development continues to move forward in leaps and bounds.  He is wanting to stand at every convenience;  although he can't quite get there from a full sit, he can stand up from sitting on a stool and when placed in a standing position is quite content to stay there.  He loves this new view on the world a lot, actually.  If I'm on the floor he will crawl over and half crawl up my arm.  I'll help him up and he will causally look around and survey his kingdom.  More often than not however, he will lean in and put his head on my shoulder.  He'll often sigh in contentment and snuggle in even tighter, sharing this new thing with me, his feet firmly planted on the ground.

He had a Speech and Language assessment a week or two ago where we set have a whole new list of language goals.  He continues to sign and say "dada" and "dah-dee!" but Mama is still a no go (except for that one time...).  That is, until the speech therapist pointed out to me that he says "baba!" a lot and asked about his ears.  It's possible, if there is fluid in there (remember all that a few weeks ago?) that he cannot hear the "M" sound properly and is repeating it as "B".   If you watch yourself say both in the mirror, there really isn't much difference.  He has been saying Mama, in fact it's his most common word.  I just wasn't really hearing him.  He's still using his own sign for "parent" and he uses it for both of us.  Instead of touching his thumb and spread palm to his forehead (where he signs "Daddy"), he taps it on the top of his head.  We're continuing to work on "more" and "thank you" and a few more signs.  He can say "tah-doo!" when you hand him things, so he is already giving us his version of thanks.  They were impressed with his sudden leap in activity;  we just can't discount the effect that his VSD closing has had on his overall ability.

It may seem to the uninitiated that Wyatt cannot communicate well, as his words/signs are limited compared to say, his chatty twin.  I want to banish this notion completely as no one that meets him seems to have an issue understanding him.  The other day for example, he did something that was pretty remarkable.  We have a small dresser in the living room that holds things like wipes and diapers and movies and things.  Zoe has discovered the bottom two drawers and routinely likes to pick up toys/random objects and hide them in there.  Lately, Wyatt has emulated her, which has resulted in some pinched fingers here and there.  We were all in the living room and I turned around at the sound of Wyatt crying loudly;  he was holding up his hand for me to see.  I asked "What happened?" and still crying, reached behind him, placed his hand on the drawer, snatched it away like it was hot and cried louder.  He had perfectly mimed getting his hand caught in the drawer.  A quick assessment and a few kisses later, all was forgotten.  We've both learned a valuable lesson with this:  he, not to play with the drawer and I have been made more aware of just how good his communication really is.  His twin sister, who can talk, has done the same thing and cried so hysterically that she could not be understood for a few moments (and needed much calming down afterwards).  He on the other hand, quickly and efficiently conveyed what the problem was and went right back to playing after being comforted and validated.  Sha-ZAM!  That's m'boy.

It seems that Zoe is the latest one hit by Cough Until You Puke.  I was awoken groggily a few times by the sound of her coughing during the night, but it was Wyatt who brought it to our attention.  After a long hack session about 4am, I heard a telltale gag and immediately Wyatt started to cry.  I stumbled into their room to find a bewildered Zoe in a mess in her crib with Wyatt kneeling up against the rail of his crib, obviously distraught at the state of his sister.  I flicked the light on and started about the business of stripping her bed while Sean popped her in the tub.  Wyatt was pretty patient for a few minutes, as he sat with one eye open, but had obviously had enough as he eventually reached as far as he could to snap the light off before laying down again.  I laughed and went across the room to turn the lamp on, to which he groaned and sat up again, grumpily.  His language could not have been clearer if he had actually said "What the hell, guys?  I'm TIRED!" 

I guess it is time to finally drop his crib down as he can now open the door.  We are used to leaving their door open a crack, to help with air circulation and whatnot.  Sean got up very early one morning to use the washroom and in walking out of our room, noticed the door of their room open.  He thought "What the...?" and in walking towards to investigate, a little head popped up over the edge of the crib and squealed good morning.  We figure Wyatt was able to grasp the edge of the door and flung it wide, in the hopes of seeing one of us.  We started shutting the door at naptime that day, only to hear what sounded like the doorknob rattling shortly thereafter.  He is unable to get out or fall out of his crib still, but to be safe, I think it has to drop down a level.  That will be a big milestone for us, as he is definitely no longer a baby, instead he is very much a little boy.


Life goes forward, regardless of things like surgery dates.  Although April 3rd crouches in the corner over there, I am aware of it and regard it warily in my peripheral vision.  My concerns are not really based on the procedure itself, but rather all the planning and preparation involved and other intangible Mommy-like things.  It is comforting to know however, that when the fear starts to grow and loom in the shadows, I have many things that bring me comfort and stop it in its tracks.  My kids.  My goofy husband.  My friends, both online and IRL.  My colleagues (of all stripes) who banded together to let me know that they were supporting us with our upcoming journey and the individual ones that have approached me since to offer private words of encouragement.  With all of this I may just muster the courage to look it directly, maybe even extend a finger or two.  Maybe, if I remain still enough, a well placed pst-pst-pst can coax it out into the light.

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I'll Have the Coffee

In the nascent early morning rumblings of my head yesterday, several things collided and suddenly made sense.  That's usually the way things go;  in these days of toddler wrangling-full time nursey-bloggy-exhausted-fire putting out-ness, it's amazing that I can find two neurons to rub together.  It is never a full out Oprah "A-ha!" moment or a mad dash to the keyboard to hopefully catch the ideas that are pouring out my ears, but rather a mild "humph" that may or may not be audible as I shufflewobble downstairs to 'make the Tassimo go'.

You have to understand that my thought processes, when not consumed by my daily responsibilities are generally allowed to wander free range.  I read a lot; and I read a lot online.  Many things can pique my interest in the course of a day, so it's not surprising when a few of them float to the surface first thing in the morning, like the answer in a Magic 8 ball.  Instead of "signs point to yes" this particular morning, while I shook out the cobwebs, I got "I'll have the coffee".

Let me explain...

Monday, I came across yet another example of the "singularity" of Down syndrome.  By this, I mean that the general public, as a whole, has a perception of people with DS that is somewhere around 30 to 80 years out of date.  Yes, I am generalizing here, but there are a great many people that look at DS as deficient, sick, fearful or something to be despised. As an aside, this is why I get annoyed at the crestfallen and horrified looks I used to get when I told someone new about Wyatt having DS.  Last week, it was a family in Texas who did not want to sit near a child with Down syndrome in a restaurant.

This week, it is the Today Show and a fluffy segment on pre-natal testing.  I am sure it meant at one point to provide a balanced view, but managed instead to convey some very thinly veiled biases.  The test is presented as the first of it's kind (it isn't) and much safer and less invasive than CVS (Chrorionic Villus Sampling) and amniocentesis.  It certainly is, but so were the other first line blood tests that we have been using for years.  In the segment, an affluent, attractive 'older' couple is featured taking the test after proclaiming that [Down syndrome] "is one less thing to worry about".  Also noteworthy is that this test only screens for Trisomy 13, 18 and 21, not the other myriad of genetic issues that could occur.  The woman is 35 and described to be in a higher risk category. (By her age alone, she has a 1:385 chance, actually).  Not surprisingly, the couple reveals that they are "safe" later on and neatly steps around what their decision would have been if the test had proven otherwise.

The show also uses an "expert", a doctor who uses outdated and paternalistic terminology ("Down's baby") and states that this bloodtest "... allows people to really think, what’s the realistic expectation of this pregnancy and what does my life look like with this new baby?"  I guess this information will have to come from personal research as she did not explain how exactly this was supposed to happen and no examples or resources were offered.  Finally, the whole thing is glossed over by focusing on the 'bonus' gift of this test: the baby's sex can be discovered weeks earlier than using 'traditional methods'.

Nowhere does it mention that DS can happen to any age mother, or what less affluent people who potentially cannot afford the $2000 USD price tag (that may or may not be covered by private insurance) will do or what social ramifications or possible further stigmatization they might face because of this.  There is also no mention how a positive result would have been handled in the doctor's office.  Sadly, the subject itself is worth so much more than a fluff piece ending with a happy, affluent "safe" couple opening a giant present to reveal to the world that their unborn baby is a boy (and how delighted they are at this news).  We wonder how, in this day and age, a person could be so hateful to demand to not sit in the booth next to a boy who looks a little different.  Yet, we continue to ignore how stereotypes of Down syndrome are perpetuated in media and popular culture, even subtly.  I continuously find these things frustrating and disheartening.

Also this week...

I ran into a blog that asked why there were so few blogs about older people with DS.  The author (who I do respect a great deal), suggests that it is because parents "get over" Down syndrome and find that they don't have a lot to talk about.  Or, it's a generational/technical divide.  I will buy the technology angle to a certain degree, but I'm not so sure I agree with the former.  I'm sure there is a lot of initial enthusiasm about writing and making a difference when you first have a child with a little extra, much like the first week of January finds a lot of people sweating away at the gym with conviction.  As time goes on, those people start to fall by the wayside.  That's because most bloggers, by nature, are not writers, just like the January folk at the gym are not athletes.  Life gets in the way too;  as kids get older, you actually have less time, not more, with activities and therapies and the like.  Skills are not learned at a furious rate, like in the early years.  I'd put forth time as a better obstacle to blogging than "getting over" Down syndrome.  I'd also hesitate to discourage new parents from setting up blogging-shop;  I've learned a great deal from the stories of new parents, especially those that have occurred a decade or so apart. Those parents of adults with DS, in a lot of cases have continued their advocacy, just not in this format.  There are also more than a few self-advocacy blogs popping up here and there.  The idea that the parents of young children with DS make all the noise, while the older, wiser parents just quietly get on with life is a little insulting, frankly.   I may not have the track record to prove it yet (other than two years of publishing at least weekly), but I plan to be here for quite some time.  These kind of things irk me as well.  There is so much division in the Down syndrome "community".  Pro-choice, pro-life, pro-test, anti-test, pro-homeschooling, pro-inclusion, pro-religion, athiesim, science... Often heatedly discussed.  How can the general public take us seriously when we can't offer the same courtesy to each other?

The answer, it seems, came to me in the form of another FB find.  A friend shared the following story and I shared it on the Facebook page on Sunday.  I've since researched it a bit and the story has changed a bit here and there... sometimes it's a wise grandmother, sometimes a father.  Regardless, the anonymously penned story goes something like this;

A young woman went to her grandmother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose.

Her grandmother took her to the kitchen. She filled three pots with water. In the first, she placed carrots, in the second she placed eggs and the last she placed ground coffee beans. She let them sit and boil without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her granddaughter, she asked, "Tell me what do you see?"

"Carrots, eggs, and coffee," she replied.

She brought her closer and asked her to feel the carrots. She did and noted that they got soft.She then asked her to take an egg and break it.

After pulling off the shell, she observed the hard-boiled egg.

Finally, she asked her to sip the coffee. The granddaughter smiled, as she tasted its rich aroma. The granddaughter then asked. "What's the point,grandmother?"

Her grandmother explained that each of these objects had faced the same adversity--boiling water--but each reacted differently.

The carrot went in strong, hard and unrelenting. However after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior. But, after sitting through the boiling water, its inside became hardened.

The ground coffee beans were unique, however. After they were in the boiling water they had changed the water.

"Which are you?" she asked her granddaughter.

"When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?"

Think of this: Which am I?

Am I the carrot that seems strong, but with pain and adversity, do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff?

Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you.

I posted that quote originally as it resonated deeply with me.  I've been through many personal trials and at various times have come out the other side being the egg or the carrot.  I see it every day in life, in my work, in my family.  You either are hardened and have limited uses, or become very soft and easily destroyed.  When it has come to Team Logan, specifically Wyatt and his Down syndrome, I changed my tactics:  I became determined to be the coffee bean and change my environment.  I think I did that, through this blog, through my page, through my group.  I created something that others could enjoy at the same time.  And hey, we're talking about coffee for heaven's sake.

So, yesterday morning, as I puddled around and tried to make sense of what I had experienced and the things that were bugging me, I chose the coffee, both literally and figuratively.  Instead of passively allowing stereotypes to continue, I was more determined to speak out.  Instead of dividing a community, I am more determined to help build a unified one.  

If we want change, we have to be the change, as the old saw goes.  We have to continue to speak out against the use of the R-word, to change the stereotype of the 'kid who won't amount to much'.  The only way to do this is to work together, not to try and outshout each other.  We have to realize that we are doing this not just for our kids, but for all the ones that come after as well.  

I'll have the coffee.   I'm going to need the energy, methinks.

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