We Are All Perfectly Imperfect

But some ‘show resilience and innovation in navigating a world of inaccessibility, stigma, and discrimination.’

When our babies are newly born, they rank in two ways:

• a masterpiece and
• a work in progress

It doesn’t matter if they are super-beautiful, as planned, with Daddy’s dark eyes, and curly hair.

Nor are they negated if, for example, the child has Down Syndrome.

Or spina bifida.

Or a cleft palate.

Each is still a masterpiece.

Each is still a work in progress, a unique creation, a human being designed to live a meaningful, maybe inspirational life on our planet.

There is much more to be achieved

But it’s how we react to each of these creations that will determine how they will turn out. If they are born ‘less than perfect’, then as parents we have an uphill battle.

Society can be cruel to those that are seen as wanting.

But good parents can provide children with the skills and reserves to rise above such cruelty.

Let me explain.

Some years ago I had two boys in my class, one born with spina bifida, the other with a cleft palate.

Each of these boys was both confident, and capable.

I’d had conversations with the parents before the students entered my class, and little reference was made as to their previous problems. They simply hoped for the best for them, to be accepted as they were.

Friendships flourished, and all was well. But I knew there would be times when the other children would ask questions.

That happened for Joe, first of all.

The children had been asked to bring in some of their early-childhood photographs, and talk about them in our class circle.

When Joe’s turn came, he proudly shared his chosen baby photos. Some gasped when they saw them.

Eager questions followed:

• What happened to your face Joe?
• What’s that THING?
• Was it sore?

To be honest, the plastic surgeon had done an incredible job on Joe’s face, a fine white scar above his top lip, and a small pucker under his lip, remained as evidence of restoration.

I looked at Joe, who was not one bit put out by the questions and asked, ‘Would you like to explain?’ Assuredly and matter-of- factly, he did.

It was clear to me that his parents had primed him up to answer all questions with confidence, not just in this instance, but generally.

The children never ever referred to it again.

Later that same year, the students had swimming lessons. As they were quite young, they were required to get into their swimwear at school. When Jack was getting changed (in the classroom), the children again began their questioning, this time about the scars on his back.

Once again I asked if he would like to explain about his surgeries.

‘It’s why I walk like this,’ he said, after expertly mapping out his condition, and the surgery he had endured over the years.

The students accepted the explanation, and as far as I’m aware, it was never referred to again.

These two boys enjoyed excellent self-esteem, Jack often reminding me that he was the smartest in the class…which he was!

Neither saw themselves as lesser beings. Today each is happily married, in professional careers, and much of their success goes to the attitude of their parents and their wider family.

Adopting a you-can-do attitude

Australian Paralympian, Kurt Fearnley, was born with a congenital disorder called sacral agenesis which prevented fetal development of certain parts of his lower spine, and all of his sacrum. His parents’ attitude was to find out what he was able to do, rather than the reverse.

To that end, following the examples of his siblings, he was often seen scaling trees and jumping out of them.

Today his parents couldn’t be prouder. Not only has he won gold medals at the Paralympic Games, but also ‘crawled’ the Kokoda Track, on his hands!

Just to get a picture of the immensity of what walking the Kokoda means for an able-bodied person, the track, is really a hike over very challenging mountainous terrain, and takes between four and twelve days. It’s pretty grueling.

So can you imagine the challenge it was for Kurt? Wherever there’s any difficulty, Kurt finds a way around it.

Dylan Alcott, another Aussie, is yet another force to be reckoned with! Born with a tumor wrapped around his spinal cord, he was successfully operated on in the first few weeks of life, and though it rendered him a paraplegic, he has gone on, not just to be an incredible athlete, but a successful afternoon host on Australia’s TripleJ, and the ABC live music shows.

And though we talk about attitude and disability in their instances, Stella Young, sadly now deceased, had another take on it.

She asserted that, the quote, ‘the only disability in life is a bad attitude’, is bullshit. ‘The reason that’s bullshit is…no amount of smiling at a flight of stairs has ever turned it into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude, is going to turn all those books into braille.’

Yet the above quote belies who Stella really was. If ever there was an amazing human being and a witty and very successful disability advocate, it was Stella.

As a comedian, writer, and activist, she believed in reshaping the way society views people with disabilities.

“The writer and comedian was born with osteogenesis imperfecta, a genetic disorder that causes bones to break easily, and lived her life in a wheelchair. Earlier this year, during a TedX talk in Sydney, Young bluntly told the audience that she wasn’t there to inspire them and that a disability alone “doesn’t make you exceptional.” The presentation was aptly titled “I’m not your inspiration, thank you very much.

“In reality, Young ended up inspiring so many and being so exceptional — not because of a disability, but because of humour, knowledge and understanding — and used her comedic touch to bring attention to the hardships often faced by people living in a world not designed for their bodies. Despite objections, she referred to herself as a ‘crip’ and didn’t shy away from her everyday struggles, instead putting them front and centre with a dash of wit.”

One of the descriptors of disabled people Stella hated, was, ‘inspirational’.

As far as she was concerned, living with, and finding ways around disability, is nothing to do with genius, or inspiration, but rather it’s simply learning to cope…barbecue tongs to pick up something you have dropped…it’s not genius!

Instead, she says that disabled people learn from each other’s strength and endurance ‘against the rest of us…a world that exceptionalizes and objectifies us.

‘People with disabilities are overcoming more than just their diagnoses, but the stigma of society around them. They show resilience and innovation in navigating a world of inaccessibility, stigma, and discrimination.’

The title of this article is, “We Are All Imperfectly Perfect”.

But if we take time to imagine even one day in the shoes of the people I have talked about, we able-bodied people have neither the skills, not the mental acumen to live one day in their shoes.

But do we have the will and the tenacity to make a better world for them? For that is what they need most.

A young woman I worked with, with severe cerebral palsy, told me that the worst thing for her, was that, in public, people turned their faces away from her, and all she wanted was for them to say hello.

All of us know someone with a disability. It may not be physical, it may not be obvious, but if a disability is there, it sets them apart from society.

Bear in mind too, that some of us, through accidents, may too become disabled.

In which case, shouldn’t we all be willing to be part of the change that could see disabled people better serviced to:

• enter the workforce
• gain promotions, which often goes to the squeakiest wheel, or to the taller, better looking candidate
• achieve the maximum level of support to live independent lives
• enjoy inclusion

When we step out from the comfort of our comfortable lives, we can make lives so much better for those who have little voice, and for whom comfort is an illusion.

We can be the change that sees them work towards being meaningful, societal participants.

It’s not that long ago when disabled people were hidden from view, almost as if they were shameful beings. Now we have the power to change that by truly caring.

We have all one chance at living. Let’s make it our best life, by helping pothers to have a less difficult one.