What is Your Life Expectancy?

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Every weekend I have the pleasure of having my 13 year old foster brother come to stay. He has, what they call, “complex disabilities”: spina bifida; hydrocephalus; foetal alcohol syndrome; autism; ADHD; lower limb paralysis, intellectual impairment…..  The list goes on. On paper, he looks a mess. In reality, he is a little Aussie legend. I know I am a little biased-but honest to God this kid is phenomenal.

The Department calls it respite: time alone for my Mum and my Step-father. My brother calls it respite for him, from the “old people” (cheeky little bugger!). I call it: having my brother come and stay. Mum has him during the week and I have him on the weekend. She does all the boring shit that she is good at, like medical appointments and school. I do the fun stuff on the weekend. This is the stuff that I am good at.

So, the thing about our family is, we don’t do victims.  There is no way that we would allow him to be limited or defined by his disabilities. So as much as we can, we have tried to provide as many opportunities as we can for him to experience life and grow to his greatest potential. A favourite joke in our house is for him to say, “I can’t do it, because I have disabilities.” We pause, look at each other and then proceed to laugh and laugh. Because this kid, can do ANYTHING! And to use his disabilities as an excuse is laughable.

One of our favourite things to do is shock people. We go to a public pool and I tip him out of the wheelchair into the water. People gasp and he responds by swimming like a fish. He goes on rollercoasters and diving boards, skateboards down drops at skateboard parks. Him and my son (they call each other brothers) rough house at parks and push each other off swings-much to the chagrin of other park goers.

Ableist Conversations

The usual conversation of strangers to us when we are out in public:

Well meaning citizen: “Excuse me, that handicapped boy has fallen out of his wheelchair”.

Me: “He has got arms, he can get back in. Oh, and PS. we hate the word handicapped.”

Well intentioned ableist: “Excuse me, that disabled boy is being hurt by that other boy.”

Me: “Actually, they are brothers, having a fight and the kid in the wheelchair is going to kick his brother’s arse. I will step in when I see blood.”

Kind hearted, sympathetic, patronizing (usually adult female): “What disabilities does he have? And what is his life expectancy?”

Me: “I don’t talk about his body in front of him. It is quite rude; like asking why are you so fat and what is your life expectancy.”

Little Kid with no filter: “What is wrong with your hands? Where are the rest of your fingers? What happened to you?”

Elijah: “I had a fight with a crocodile.” Or “I was in a high impact car accident.” Or  (my personal favourite) “I was attacked by a shark when I was surfing.”

Most of the time, we are pretty good with these situations. We deal with it with good humour, grace and a fair lashing of dry wit. We are okay with children staring, people asking questions and others with well-meaning intentions. But other times, we are just not up to it. We are tired, or cranky and don’t have the patience, energy or inclination to grasp the teachable moment and educate others. I feel annoyed at the grown adults that stare without even trying to look away. He gets tired of people who rush to move the chair, help him transfer or grab hold of his wheelchair.

“Why can’t they ask me before they touch the chair?”

And those times, we try hard to swallow our gruff retorts. But sometimes, we just want to go to the beach without being stared at. Or go to the park without medical questions. To the general public…. Have a look at his chair and then look away; teach your kids boundaries with questions that they ask; if you feel compelled to stare at wheelchairs, maybe google wheelchairs in your spare time; don’t look at him with sympathy and make tut tut sounds. He doesn’t need your sympathy. And pause before you ask us questions about his medical conditions.

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One thought on “What is Your Life Expectancy?

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  1. This is helpful. I have been like this with my friend who just turned 50 and has spina bifida. I always ask if she wants a push or help getting into the car. If we’re going uphill she’ll say yes, but otherwise, she likes to do most things herself.

    Liked by 1 person

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