You’re Not That Special

The truth is, I entered the disability sector by accident.

It was nearing the end of 2012 when I had to take an extended break from working fulltime, and after almost seven years in the workforce, I had no idea that this was an okay place to be in. Which is why, instead of seeing 2013 as my Year Of Rest, I set about finding something else to do.

It was a tough decision. Should I complete another Arts degree? Do something ‘just for fun’? In chats with loved ones, I was steered away from things with no obvious practical application. Which, given I was in my late 20s and had no career, seemed fair enough.

This is why, after much deliberation, I enrolled in the Certificate IV of Disability. Isn’t that what everybody does when they have a year off work?

My goal for the end of 2013 was to get a steady job at the end of it. I figured that if I got qualified, I would be fantastic in a Day Centre or a Special School. I could totally rock it. I just needed to learn how.

For those of you who know me, you know that’s not what I ended up doing.

My qualification didn’t teach me how to engage with kids with autism in sensory rooms, or adults with Down Syndrome in sheltered workshops. As a result of my education, I could actually “totally rock” at working in a Day Centre or a Special School – if your definition of “totally rock” is to “constantly question the establishment and work tirelessly to bring it down”.

I learned a shocking thing in my ill-fated Year Of Rest. I learned that people with disability – even people with severe disability – are human. Which is a strange thing for someone with disability to need formal education to learn, but there you have it.

You see, it wasn’t my fault that I didn’t know this before. I think many more of us are unaware of this, even though we’d swear on our loved ones’ lives that we fully understand that EVERYONE is human. ‘I wouldn’t hurt a fly!’ is the collective protestation of *good* people.

But we hurt flies, and humans, all the time. And much of this pain is inflicted by the system designed to help people.

I’ve now been working as a disability support worker for four years and met many *good* people. I’ve networked and volunteered with people and organisations with stellar professional values, and I’ve worked in collaboration with staff whose professional values I wildly disagree with. All good people. But a “good person” does not a “good disability support worker” make.

The main difference between the people I identify as having “stellar professional values” and “professional values I wildly disagree with” is imagination. At best, this may not seem like a big deal. At worst, it may seem like I’m making a value judgment. Which, strictly, I am. Here’s why:

If we really, really, really see EVERY person as human, regardless of how wildly their social behaviour deviates from the norm or how different their body is to any body we’ve seen before, then we do not create structures that separate ANYBODY from the rest of humanity. If we are born into a world that sees people institutionalised from said structures and the cruelty of a quick transition outweighs the inhumanity of leaving a person there, we work very slowly to reverse the situation. Each moment of my professional life is spent working with one person at a time, at THEIR pace, to inch towards a society that recognises them as an actual human with actual rights within mainstream society.

If we see a person as “severely disabled”, then we actually don’t see a “person” at all. The result of this is we perpetuate separate structures such as group homes – where, by the way, women with intellectual disability are more likely to be victims of sexual crime. Make no mistake here: Yooralla was the tip of the iceberg. Hence the Royal Commission.

But when I observe or engage in conversation with people who “lack imagination” around what is possible for PEOPLE with severe disability, one of the most common things that comes up is “oh, but you don’t understand – X’s disability is more severe/requires more resources/etc, etc.”

These days, I wear a few hats in the disability sector. I am a support worker. I am a person with disability. I volunteer in a capacity that sees me meeting many people with severe disabilities in a range of settings. I have qualifications. I specifically target individuals and organisations to network with that have a vision for a more inclusive society.

But it would seem that professionals’ lack of imagination around what the person/s in their life CANNOT do (more to the point: said professionals’ stereotypes that do not stand up to scrutiny and so they engage in covert ways of asserting their power) overrides anything that I or other advocates have to offer.

This wouldn’t be so bad if it was just personal. Given that I have an invisible disability that I’ve learned to manage to a large degree, criticism that “I don’t know what it’s like” would hurt a lot, but it wouldn’t surprise me. But to limit the opportunities of someone we’re being PAID to support because their behaviour/communication is used as reason to trap a person within dependence-inducing structures?

Here’s the low-down: Nobody’s stereotypes are special enough to be used as weapons against people made vulnerable by society. I don’t care if someone has worked in the sector for 30 years longer than I have, or has worked with people who have “more severe” disabilities than I’ve worked with. If that was relevant, no person with severe disabilities would’ve ever achieved a rich and fulfilling mainstream life. And that is not the case.

So to the disability sector at large, I just want to reiterate that we, as workers, are not so special. Instead of being fearful, USE the NDIS to closely examine how other professionals have supported individuals to live fulfilling lives within their local communities, and FOLLOW SUIT! Instead of being scared for your jobs (because if the service system was actually of service, it would be about the people supported by it – if that doesn’t work for you, leave the disability sector), how about creating a new paradigm that sees everybody as human instead of “high/medium/low functioning whatever” and “but my stereotype is more accurate than your imagination and resources”? Because it’s not me you’re hurting. It’s everybody.

And besides, we don’t “End The Awkward” with slogans. We end it with action.


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