go away…

It was lunch time and Mac, having just finished eating, was heading out to the playground.

“Go away,” they said, as Miss M and Mac approached the group of boys.

For a moment, Miss M was worried – these were Mac’s fellow Grade 6 boys.

“Buuuttt,” she started, about to say ‘It’s Mac’ when they quickly clarified.

“Oh, not Mac, he’s with us, we just don’t need you.”

“Fine,” she said, feigning indignation, but secretly thrilled at their autonomy and independence.  Clearly no adults and certainly no ‘female adults’ are needed in their midst.

I was relieved to hear it.  Mac was a little upset on the second day of sixth grade, thinking he wouldn’t have any friends in his class and what that might mean.  This year is a big change for him –  it’s his first new teacher in three years.

He knew he wasn’t going to get in the same class as one of his best mates. They completely outwit/outplay/outmaneuver the teachers and don’t do any work at all… all the while looking “very busy”.  He was ok with that, he said.  But for some reason he thought all the other kids were allowed to pick a friend and he wasn’t.  I don’t think that was the case, and after actually getting his class placement, he realised he has some great kids in there and he is much happier.

It’s hard to balance the “sticking with who you know” approach in class friendships or embracing the “new kids mean new opportunities”.  Every year I have a moment of a panic – worried that he might not maintain those relationships he formed in the prior year… so far, that has been misdirected worry.

It was great to hear Miss M report back that, on the first morning after being placed in their classes, lots of the kids said: “Right, when do we get to learn how to work with Mac.” Learning about Mac’s technology, working with him is still a revered role.  If he stuck with the same kids all the time, those new kids would miss out and so would he… you just never know what allies are around the corner.

So the first week of Grade Six has been OK, here’s to a wonderful final year of primary school.

it’s probably better…

“So, how big will Mac get when he grows up?” came the query from two of his 6^th grader friends, J1 & J2.

“ ‘Cause we move him from his wheelchair to his jogger now you know,” they added.

Think about that for a moment … their motivation for this knowledge comes from the fact they’ve taken it upon their 11 and 12-year-old selves to lift and shift Mac to whatever chair he wants to be in. And, more importantly, obviously plan on lifting their mate when they are grown ups – they just want to know how big he’s going to be so they know they’ll be strong enough.

They were pretty content with the fact Mac is likely to always be a little bit smaller than them (potentially significantly smaller than some of these very strapping, super sporty lads).

The conversation changed tack. “So, how did Mac actually get his disability again?” asked one of them. Every so often, different kids seek more information. I gave them a quick recap, offering the odd clarification they needed along the way – they knew most of it, but clearly just wanting to sure it up in their own minds.

And then came their take on past events.

“Well, that kind of sucked,” said J1.

“But I can’t really imagine Mac any other way … he wouldn’t be him.

“And really,” he went on, “it’s probably better. If he was like us, imagine just how much trouble he would get himself into.”

My heart sang!

“It’s. Probably. Better.” Did you hear that?

Mac’s mates just ‘get him’. They know him, know he can be a villain, that he can be cheeky, facetious and, I’m sure, at times disrespectful. They’ve worked out not actually saying or acting on everything you think or feel might actually be to your benefit. It works for Mac. Just quietly, these are a couple of kids who know all too well the pain of dealing with poor choices, they’ve quite a bit of experience over their primary school years – they are awesome kids … they’re just, shall we say, “spirited”.

But this is bigger than just ‘getting Mac’. This is what happens when people with disability are truly and authentically part of their community. Disability isn’t viewed as the ‘worst thing ever’ where ‘death’ is preferable to living with a disability.

It was just what my heart needed to hear.

Considering the recent commentary here in Australia and internationally where we have been slammed by the media and the “Dying with Dignity marketing campaign” which so readily sends a message that disability is undignified and people should be able to choose death over living with a disability I feel somewhat comforted that this next generation won’t be so ignorant.

For those kids/families growing up in an inclusive community, I have a renewed sense of confidence that disability fear-mongering will not get the traction it currently does by so many in our society. In fact, I was reminded of another conversation Mac and I had with his mate K last year, when K said he “kind-of wishes he could have a tummy tube just like Mac’s so that if he was too tired to eat after footy training, or if his mum made a ‘disgusting dinner’, he could stick it down the tube”. It is quite amazing the different insight into disability Mac’s peers get compared to those adults who would argue it’s better to die than be fed via a tube.

If you want to understand why the Dying with Dignity legislation and campaigns are so dangerous to people with a disability please read this article. These people, far smarter and more articulate than me, can explain it so much better.

Disability and Euthanasia, 28 Nov 2014

So, as International Day of People with a Disability draws to a close for 2014, I take great comfort in the fact there are kids in our midst who don’t see disability as something dreadful or undignified. These kids, because there is no “us and them” where “all means all” just get disability for what it is … no big deal, or in some instances … something that might actually be “better”.

fridge magnet friday…

I often hear parents of children with disabilities voice concern over people staring at their kids… but is the alternative better?

Louis Lim’s powerful observation makes me absolutely sure I will continue to embrace any prolonged gazes cast towards Mac.   I don’t ever want him to be invisible to his community, invisible to our society or to be “eliminated from our consciousness”.

So I guess I offer a word of caution to those who have difficulty accepting the ‘stare’. “Be careful what you wish for”, there might just be way more at stake if a stare, a sidewards glance, a gawk  or an outright ‘gape’ is eliminated – invisibility is a poor alternative.

Check under the fridge for more information on Louis Lim…

mid-year school report

CLICK IMAGE TO OPEN

Needless to say we were pretty impressed with Mac’s 2010
mid-year report.
Great insight, very positive…
a great record of his hard work.

Hello world!

Inky Ed! will follow the journey of one little boy, Mac, as he starts kindergarten in 2009.

Mac will be going to school “through the same gates” as all the other five year olds – he will be accessing an ‘inclusive education’ despite his multiple disabilites.