Reflective Practice

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

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

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

I know how she feels.

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

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

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

A valuable resource came to me as I was trying to get my thoughts organized. Alison Piepmier's Saints, Sages, and Victims:  Endorsement of and Resistance to Cultural Stereotypes in Memoirs by Parents of Children with Disabilities provides a great deal of insight into this issue.  Although Alison uses formally published materials for her comparison, I believe that parent advocate blogs could quite easily be used here as well.  This part in particular jumped out at me:

"Many of the memoirs I have read reinforce and thereby strengthen our culture's dehumanizing stereotypes that surround and define disability. Through their use of grief, their emphasis on a limited medicalized model, and their framing of the child's disabilities, these memoirs often represent the child not as a person but as a problem with which the parents have had to grapple. "

It's a fine line sometimes, wanting on one hand to find others to share in the experience, but at the same time, what are the costs?  When we call our children "broken", when we focus on our interpretation of their thoughts and feelings, when we refer to our children with otherworldly terms, when we focus on the difficult times, when all we list are doctor's appointments, surgeries and medical interventions, when we blame our kids for our mistakes and our bad choices, what message are we giving the world?

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

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

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

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

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

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

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

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

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

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

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

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

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