1. Will

It was a steep learning curve for me, volunteering at a two-week camp for people with disabilities when I was 17. Learning to communicate with someone unable to verbalise their thoughts. Showering someone bound to a wheelchair. Not for Will though. He had already dedicated two years of his life to the work. Now, two decades later, he remains committed to helping people with a disability lead a happy and fulfilled life.

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I remember one of the first kids I worked with having a really good time during camp, but becoming really sad and withdrawn when he realised it was ending. We had spent so much time together it was impossible not to be affected.

Three years later I discovered his home environment was an abusive one and he had been taken away from his family. It was a powerful reminder of how tough life is for some of these kids and their families, and how special a Melbourne Youth Initiative (MYI) camp can be.

MYI started in 1985 as people were beginning to accept that those with a disability didn’t belong in an institution.  I distinctly remember going to parks in the nineties with kids from MYI and watching everyone else leave. Parents still didn’t want their kids hanging out with children with a disability.

I started volunteering for MYI when I was 14. I took my brother’s place when he opted to go surfing instead. I vaguely knew it was a camp for kids with disabilities but I had no real idea what it was all about and no real understanding of the responsibility that comes with caring for a child with diverse behaviours and abilities.

These camps aren’t fun all the time. If you’re working with a kid who just wants to sit on a bus for four days, it can be the most boring four days of your life. The great thing about them though, is that you connect with an entire group of people through a really intense experience.

I recently read Camus’ Myth of Sisyphus. Sisyphus is condemned to ceaselessly push a rock to the top of a mountain, only to see it roll back to the bottom again — making his endless toil futile.

Through Sisyphus, Camus is highlighting the absurdity of the human condition: even though there is no higher purpose, we still care really intensely about everything. Like Sisyphus, we are stuck in this absurd position.

In some ways, it’s the same with these camps. They appeal because of their intensity, but at the end of the day, the camps in themselves are meaningless. I couldn’t really do anything for that kid or his family. The value of the camp only lasted while we were there. The moment camp was over, the stone rolled back down the hill.

We really want to build something that makes a lasting difference for these kids and their extraordinarily dedicated families— rather than providing temporary respite from a hopeless situation. Camps are not pervasive enough and don’t last long enough. We need a therapeutic program to complement the camps in order to change the child’s behaviour, their relationships and future prospects.

Sadly, MYI was forced to suspend our operations in August last year and this has had a huge impact on the families we work with. Thankfully, we have found a way forward. Working in partnership with another provider will enable us to provide a combination of direct services and therapeutic programs for the families who really need it.

The children we work with engage in “behaviours of concern”, and generally this means they will experience excessive amounts of punishment in their lives. We use a model called positive behaviour support that focuses on prevention, not punishment. It’s about analysing why behaviour has occurred to determine what purpose it was serving, then planning a preventative strategy.

For the last few years we’ve been working on extending this model into a full blown therapy. Basically, our theory is that humans are designed to respond to the closest perceived threat. When that threat goes away, we can look further into the future, to see the next impending threat.  The more distant the threat, the more meaningful the corresponding reward, and the more fulfilling your life can be.

For example, dealing with what you are going to eat today addresses a lower order threat than dealing with what you might study or what kind of job you want when you graduate. The latter comes with hope and opportunity, but it’s hard to think that far ahead when lower order needs aren’t satisfied- when you’re hungry for example.

For children with disabilities, their lives are often controlled by others- their teachers, support workers, and parents. Having no real control over tomorrow means it becomes really important to control what happens right now. Some of the kids we work with become obsessed with immediate gratification (such as food or playing with a particular toy), so rarely have the opportunity to think about making a new friend.

Our program works by trying to build security, layer by layer. As more basic needs like food, shelter and safety are secure, there is a natural opportunity to orient to higher order, and ultimately, more fulfilling needs.

Through our work, we can empower people with disabilities to pursue things that contribute to their lives rather than merely address the deficits.

Ultimately, we want these kids to lead happy and fulfilled lives and to me, fulfilled describes the extent to which you can engage with your own life.

Going on that first camp was initially just about doing something different, but the experience was such a vibrant one. I remember feeling totally disconnected from the rest of my life and returning with a fresh set of ideas.

I guess it has drastically changed the direction of my life.”

9 thoughts on “1. Will

  1. Wow what a beautiful story captured on this cool blog. Bravo to Will for doing such amazing and selfless work in this space and well done to you 50 Faces for shining a light on his story.

    Liked by 1 person

    1. Thanks Miranda! It really is amazing work.. and no one else in the disability space is approaching things in the same way, so it’s quite revolutionary. Thanks for reading 🙂

      Like

  2. Sian thanks having the courage to bring this story to us all. I’m looking forward to reading more and being inspired by Will and others.

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  3. Other then guessing the meaning of the words “positive behaviour support” I never really thought much about it, but this has been a real eye opener. I know realise there is so much balance that goes into this level of care.

    The ‘Myth of Sisyphus’ is definitely something considering. I am intrigued envious of the patients and resilience of Will to push through it. This is a great read about a great person.

    Like

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