Special needs parents come in all shapes and sizes, but there is one thing that unites most (if not all) of us: a dislike of being stared at.
Because it happens – a lot.
And while we may set out with the best intentions to educate and show the world that disability does not equal tragedy, the staring gradually wears us down.
For Miss Z and me, we will be hurrying through the grocery store, walking through the park or headed to my older daughter’s ballet class when I suddenly get the feeling we’re being watched.
And low and behold, there is often someone gawking at Miss Z.
Sometimes, it will be her behaviour that attracts attention – arms waving, legs kicking rhythmically at her footrest while she sings “awaaaa awaaaa, awaaa” (if she’s happy) or tries to pull off her ears (if she’s unhappy).
Other times it might be the feed pump – a noticeable purple and grey medical device with tubes running from a bag containing a suspicious beige liquid and disappearing under her shirt.
Others with more hidden disabilities than Miss Z may not attract those initial stares, but might also have to face a lot more judgment when they are stared at. Whatever the reason, staring can be hurtful.
Every time someone stares at Miss Z, it is a reminder that she’s different.
I wonder if I’m being judged, if I’m being pitied or if the person doesn’t think Miss Z should be out and about at the grocery store / park / ballet class with the ‘normal’ kids.
It makes me angry because what the staring person might not know is – believe it or not – I forget that Miss Z is different until I notice someone staring at her. She has had multiple disabilities for pretty much her whole life and we are used to dealing with them.
To us, she’s just Miss Z and we love her just how she is.
Then again, not all stares are hostile and judgmental.
I noticed an elderly woman staring at Miss Z during a hydrotherapy session the other day. The woman was also using the pool and obviously keeping a close eye on Miss Z’s session.
It irritated me because I assumed she was staring disapprovingly, perhaps thinking Miss Z didn’t belong there.
But when the woman got out of the pool, she came over to me to say how lovely it was to see Miss Z enjoying the water. She went on to say that Miss Z reminded her of her son, who has cerebral palsy and that he’s now 30 years old and she couldn’t be prouder of all he has achieved.
When we chose a primary school for Vegemite, Miss Z’s older sister, we intentionally chose one that was small and had a strong school community.
I didn’t want Vegemite to be forever answering questions about her sister nor did I want her to be bullied for having a sister who was ‘different’.
The best way to avoid this, I hoped, was a small school where everyone could get to know Miss Z. That worked well the first year, but this year, for various reasons, I haven’t had the opportunity to bring Miss Z to school as often.
Last Friday, Miss Z and I went to the school assembly and I noticed several children and parents staring at Miss Z.
It made me feel so sad.
Not because of the effect it would have on Vegemite – her friends and most of her class know Miss Z and either make a fuss over her or ignore her (or a bit of both) – in other words, standard younger sibling treatment. Not because any of the stares were hostile, mean or judgmental.
It was curiosity about Miss Z that was making them stare.
But because it reminded me that even in a small community like Vegemite’s primary school, I couldn’t ever ease up on my efforts to make sure that Miss Z is included.
People – adults and children – often stare because the sight of a child with disabilities is a rarity.
We may no longer lock children with disabilities away in institutions, but they are still often invisible in society.
Lack of accessibility, lack of support and lack of public understanding all conspire to make even the most determined of parents decide it is just easier to stay home.
And that saddens me, not only because it isolates children like Miss Z and their parents, but also because it prevents disability from becoming more ordinary and less stare-worthy.
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