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”.

“Disabled pupils” unable to get to school…

In the news…

CLICK IMAGE

The fact this occurred is a disgrace… but I can’t help wondering if the real problem truly is the ‘bungling by the Govt’ or our society’s insistence on bussing kids with disabilities en masse out of their “natural habitat” in a segregated fashion and in most instances to a segregated setting.

Imagine if kids just went to school with their siblings, with their neighbours… if they caught the same (accessible) bus as all the other kids without disabilities. This has affected those kids with disabilities because they have been allowed to be separated away from the rest of us. *sigh*

Oh… for the record… I have yet to read or see a news broadcast item on this topic where ‘people first’ language has been used *blech*.   I wonder if they want me to send them Shawn’s 65,000 words on how they could represent people with disabilities better?

iMourn…

In 2012 I commemorate the first International Day of Mourning and Memory of the Lives of People with Disabilities. 

This day… was created to call attention to the crimes against the lives that could have been lived, that should have been shared. It is also dedicated to those who continue to rise and fight, who refuse to be silent, who advocate long past exhaustion.  Dave Hingsburger

And I share what this day means to me…

I don’t mourn disability and ask you don’t mourn my child’s disability.

I do mourn for the lives lost and potentially still being lost because of disability.

I mourn the child being excluded from a mainstream class because a teacher doesn’t want to teach everyone… and claims “there is special teachers & places for that?”

I mourn the child (and family) not being allowed to dream, to have their life filled with constant cries of “he wont, he can’t, he’ll never…”

I mourn the lives being damaged by disability systems that are built around the charity and pity model of care.

I mourn for the children being suspended from school because the adults around them aren’t being kind or fair, they set them up to fail and then blame it on “behaviours”.

I mourn that even now, in this day and age, there is still a desire to segregate, to have “special programs” to create a line through the community, to foster a ‘them and us’ mentality without thinking through the damage it can cause.

I mourn the people who have gone before us and fought this fight only for many to see it was only temporary and watch, as decades on, we are still fighting for the same stuff.

I mourn for those who don’t have a say, who are deemed unable to communicate even though their facial expressions speak volumes and could tell you much… if only you bothered to look at their face.

I mourn for those still living in an institution setting – despite there (supposedly) being “no more institutions in Australia”.  An institution is not based on the number of people under one roof – it’s about the freedom and choice a person has.  A family home could be as detrimental as an institution if there is no goal for a good life, no love, no freedom and no support for growth.

I mourn there are still special schools built on the institution model… but because the people working there are “kind and caring” and a sense of “safety” is trotted out to parents they don’t get challenged.

I mourn the grown up man still being referred to as a ‘kid’ by his family, dressed in babyish ‘tigger’ t-shirts, a man who may very well be over-loved, but under-estimated.

I mourn the children whose families buy into the “he won’t, he can’t, he’ll never” and hope someone, somewhere, steps in.

I mourn the loss of Anne McDonald her voice was one we needed.  I fear without her presence the tragedies of the past could easily be repeated.

I mourn the fact we know better yet aren’t always doing better?