Sunday, May 22, 2016

speechless and accessible

This week I spent some time writing about the need for accessible toilet facilities in public spaces, washrooms that accommodate Rachel and Janneke. As the girls grow in size, there are not a lot of places we can take them because there are so few truly accessible washrooms.  I didn’t know there were so few until we started needing them.  

I am sure most parents can relate to the elusive bathroom experience, regardless of ability. The infamous 300 km road trip scenario: kids in carseats wedged between the suitcases, travel games and sand pails… only to have to stop after 10km due to hollers of “I have to go NOW!”  And there are the pee dance moves, prompted by a “yucky-looking” powder room at the grocery store that has the child shimmying in her seat all the way home, grocery cart abandoned in aisle 4.

Having two children who are completely dependent on others and their wheelchairs for mobility brings a whole new perspective to finding a WC.

Most public facilities have one larger standard stall with two grip bars. That cramped space doesn’t come close to meeting the needs of a caregiver who might require assistance to take their child out of a wheelchair and must have a sturdy bench on which to change the linens.  The lack of such loos is a shitty barrier (pun intended) for many parents who wish to provide some semblance of normalcy for their families and bring their children out of the home. There are more than a few who have taken to changing nappies on the bathroom floor.

For our family, we try to call ahead to learn what to expect for bathroom access, and in the warmer months, we use our van to provide a private place for changing. It is not ideal, and we are trying to find successful ways to advocate for real accessibility here in Ontario. (See here for the Picture our Barriers campaign from the AODA Alliance.)

Sadly, though truly accessible washrooms could provide those who sit on the periphery of normal a safe place to pee or receive a clean linen, it seems to be a contentious issue.  There’s quite a cacophony on social media and in the news about one’s use of the chalet de necessite, suggesting some have constipated emotions that distract from helping others.

A couple of days ago, I was sent the trailer for the new TV series from ABC called Speechless. Here’s the wikipedia description: “The series follows the DiMeo family, and their own unique personality: a take charge mother with a outlandish but no-holds barred attitude, a husband who seems to be smarter than he thinks, a no-nonsense athletic daughter, a middle child who's the "brains" in the family, and their teenage son with special needs. The DiMeos are about to bring all that from a middle class neighborhood they despised because of the location itself to a more upscale town in an effort to improve their way of life, with imperfect results.”

I’ve been thinking about that trailer.  And yes, I’ve still been thinking about bathrooms.

I love the fact that one of the main characters of Speechless is a nonverbal teenager with heaps of wit and wisdom. I appreciate the fact that another main character is a parent who advocates day and night for her kid - albeit often like a bull in a china shop. I wanted to cry when I watched the verbal middle child point out that his needs are often overlooked in favour of finding the right program for his brother.

Speechless uses humour to cross lines of race, gender, status, and opinion - and allow everyone to share a joke….sometimes without saying a word. Speechless is about laughing at our scars and creating awareness about the wounds that still exist.

Humour truly is powerful…. Powerfully suggestive in a way that rants and rages aren’t.  

I’m looking forward to watching TV. I’ll take my pee breaks during commercials, of course.


Wednesday, May 11, 2016

in her shoes.... or wheels

Today, Rachel's class had a field trip to a water festival, a day geared for education about water as a resource. The day involved traveling outside from tent to tent, learning about water, the outdoors, and taking care of our planet. The kids seemed quite interested in the sessions, particularly the one on beach safety because they could talk openly about poop... e-coli.

Certainly, it was a day to learn about water, but it also brought a surprising lesson to Rachel's class. As classmate Thomas pointed out, there were no other kids in wheelchairs at the festival - there were at least 30 different schools present -and kids were staring at Rachel out of curiosity.

I had noticed at the start of the trip that Rachel was distressed. This was not a normal school day for her, and because she had traveled on an accessible bus, we were waiting for the rest of the class to arrive on their bus.  Without her teacher and classmates surrounding her, she seemed confused as to what was happening. I assured her that the class was coming, and when they arrived, they greeted her with cheer.

I asked the class to take turns coming alongside her, to remind her that we were all here together. The class didn't really need that reminder; instead, there were minor squabbles about having to share Rachel.

When Thomas mentioned that kids were staring, I realized, for this group of kids, Rachel and her chair and her feed pump are already normal. In seeing the stares of other kids, Rachel's classmates caught a glimpse of what Rachel experiences always.... and so today's water education experience also included a lesson in empathy.

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In other news, Janneke recently had a piece in the annual Niagara Children's Centre School Art Exhibit. Here is the artiste with her piece.... pointing out her favourite:

And yes, that's a mitten on her hand. She still stims her eye with her left hand, so the mitten deters the rubbing some of the time. Perhaps the one glove adds to the allure of her work as an artiste moderne?


Wednesday, May 4, 2016

Double digits

Happy Birthday, Rachel!

Today we celebrate 10 years of Rachel's life, knowing we are not alone in savouring her smile and sharing the struggles that come with her needs.  Today is a sweet day for our Rachel as she celebrates ten years of life. Ten years of smiling, laughing, and tolerating the tough stuff. We love you, Ray-Ray... our little sunshine. 

a piece by Rachel, done with her hand on a helper's hand - and she grips tightly!

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Here are two videos that paint a bit of a picture of the journey we have been on since 2006. The first was made shortly after Rachel's birth ten years ago. The second was made last fall, a couple months after Rachel began at Beacon Christian School in the grade four class.

spot and rpot