Wednesday, July 17, 2013

[R] Evolution

I've been checking out a lot of my old posts as I update our home on Tumblr.  Through this, I have been able to enjoy the first days of twin-dom all over again.  It all comes back so easily, those first days, so full of joy and apprehension and utter exhaustion.  There is so much rawness in those early posts.  So much realness.  I can still smell and feel the hush of the NICU, its low lighting balm against my red-rimmed eyes.

There is anticipatory grieving there, under a blanket of rugged positivity.  There is a lot of crying in the shower, there are a lot of unknowns.  There were two fragile little lives there, with skin like wet tissue that would tear and bleed if you touched it the wrong way.   There were two babies that had to learn to eat, gain weight and not get an infection.  There were two little NG tubes, two little incubators making sure they had the correct amount of oxygen, the correct amount of humidity, the correct amount of light.  One baby was smaller,  whose birth weight of 4 lbs 1 oz plummeted dramatically, whose bilirubin was scarily high at one point, who had an IV long after her twin.  The other baby, the older one, was bigger, more "healthy" looking at first... however his ECG, his oxygenation, his little blue feet would give him away.  He has an extra chromosome and an AVSD, the width and breadth of which we would not know for sometime after his birth.   

Those fragile babies have now grown into robust toddlers.  The littlest has grown into the strongest, trying daily to prove that she is indeed Batman, even though her parents insist she not dive off the top of the couch.  She will climb anything and lift herself into a bridge between two pieces of furniture by just using her ankle.  Her twin is mastering standing on feet that seem too small for his size; feet that are no longer blue as they take their first halting steps towards cruising.  His heart has been mended, the memory of that time fades with the scar on his chest.  There were so many unknowns there in those first days, so much fear presumably stemming from their prematurity and related health concerns.  I am heartened to see in those early posts a glimmer of the future, of the place I am now.  It would have been easy, I suppose, to blame Wyatt's extra chromosome for all of that, for the time that took me away from my family, for the inconvenience, for the drain on our financial, mental and spiritual resources.  There are some who did, there will be some that inevitably will.  In reading those old posts, it became clear to me that I never did that.  "Extra chromosome" is two words out of the paragraph above, two words that bear no more significance that the ones that surround them.  Those babies, fragile as newborn chicks have grown into some pretty kick-ass kids.  Along the way I stopped being a "mommy blogger" and became something else.  There is evolution here.  There is a revolution here.

As I've said before the rhetoric of Ableism runs deep.  The undercurrent of such shapes how we view those that have physical and cognitive differences from the rest of us.  This is where the heart of my regret resides, as the part I am most guilty of and have to forgive myself for, lives here.  I participated not just as a member of the human race, but also as one in a position that really should of known better, a health care professional.  Paternalism, one of the largest branches of Ableism, was embraced wholeheartedly in this house.  We were going to do "what was best".  Coming from a medical tradition, in those early posts, you can see that DS to me was a list of symptoms.  A list of diseases and illnesses to be researched and treated.

I looked at these lists a little closer, as time went on and I realized that almost all the "symptoms" listed were things that could occur to anyone.  In fact, there were more than a few things there that I have personally--and I consider myself to be a reasonably healthy person.  But, according to this list, if I had an extra chromosome and the same conditions, I would be very unhealthy.  Poorly, even.  I had to overcome the rhetoric of "Down syndrome is not compatible with life".  I did that... and wept at my presumptuous past.  Now that I look back, I realize that a lot of that 'grieving' that followed the twins homecoming had nothing to do with what was happening with them medically.  Rather, it had to do with the slow realization that I had disregarded, out of hand, a whole segment of the population, while maintaining the premise of advocate for others.

Thanks to the  culture I was raised and educated in, I actually did believe at one point that those with "severe" developmental delays were devoid of an inner life, possessing only an absence of inner thought beyond certain rudimentary instincts.  Life was described as functions.  Base, bestial.  That rhetoric runs deep even today as many people still believe people with intellectual disabilities are no better than animals. 

In my nurse world, we used to get a lot of what we then called "severe autistics" who were brought to hospital due to aggression.  They were quickly medicated, restrained, controlled.  No one stopped to ask the cause of the aggressive episode that precipitated their hospital visit, rather it was just accepted as something that happened.  It was "to be expected".  That was autism when I started my career.  Acting out, feelings of complete sensory overwhelm and overload, these don't seem foreign to me any more.  Through the tireless efforts of self advocates and the extended autism community; these behaviours now have explanations and many, including myself --- through the years, as I gained experience --- have acquired further insight.

Quite frankly, I feel a little this way after a while if I don't pace myself.  If I don't take vacation, if I don't stagger outings, if I don't employ my coping mechanisms, I end up feeling like I am covered in post-it-notes.  I become swamped by psychic and emotional clutter that is inevitably left over from an average day at the office.  Certain clothes hurt.  Sounds grate, smells gag.  I don't have autism.  But I can relate, even if only in a miniscule way.  That had to be learned.  Common ground had to be found and the rhetoric of "devoid of meaningful thought" had to be overcome.  But it did.  I did... and was completely horrified at how I had viewed my fellow humans.

Old ways can be overcome through the tireless efforts of others, it is true.  The rhetoric that we possess about others, whether ableist or cultural in origin, run so deep in our psyches that we don't even know that they are there.  They are.  They can also be found and carefully rooted out through education and self reflection.  Perceptions can evolve.  Language can change.  It is very frustrating in the advocacy world as you often come across people that are so ignorant, so willfully opposed to learning or accepting a potentially new way of thinking about other people that it is very tempting to give up.  It is very easy to assume that some people are beyond hope, beyond reason (and thereby become as close-minded as those that you hope to affect).  I don't have the liberty of thinking that way; I was one of those seemingly hopeless, arrogant people and yet, here I am.  I will forgive myself for subscribing to the ableist rhetoric for so long and continue my personal evolution as my family grows. However, I will not forget.

Changing current perceptions about Down syndrome will require a larger presence of (for lack of a better term) self-advocates.  It is those with DS themselves that will finally spearhead putting the rhetoric down for good.  Then, we can put to rest the notion that people with Intellectual Disabilities/Developmental Delays are unable to champion their own rights and simply refer to them as we would any other advocate.  The next chapter in this civil rights struggle has yet to be written.  I and those neuro-typicals like me won't be the ones writing all of it either;  we will have the privilege of participating, to help things unfold and to amplify the message.

There is evolution hard at work here, even within the revolution itself... 


  1. Thank you, Jen!!! I think every parent of a child with a disability has a similar arc of evolution, of awakening. I remember being pretty cavalier when it came to the issue of "what to do" with people with disabilities. We had friends whose daughter had intellectual disability. My mom always made me hang with Rosie when they visited. To my immature, hard-hearted teen self, this was most unjust. We had nothing in common (I thought). Rosie repeated everything I said. Looking back, if only I had approached her with compassion and fun, what might that have been like. Don't misunderstand, I wasn't mean, just unable to see our connection. Now, I look on Rosie's parents as heroes. Rosie was born in an era when parents were routinely expected to commit their disabled children to the large institutions that existed then.....and then to forget them and go on with their lives. Rosie's parents defied the norm, took a walk in faith to raise her at home, and did a wonderful job. Rosie's parents have both passed. Rosie lives in a group home now and has since she was about 30. But when her parents were alive she came home every weekend... They were quiet pioneers. How I wish I had the chance to tell them how much I admire them. I didn't realize how heroic they were until we began facing the challenges of Sam's autism.

    1. It's a hard revelation, realizing that you have been a dick most of your life, no matter how well meaning you thought you were being. However, we reflect, we learn, we grow. Thanks for the comment. :)


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