Tuesday, 4 February 2014

Dead is not better than disabled

There's a storm brewing in political circles in Australia at the moment about whether or not the national government-owned broadcaster, The Australian Broadcasting Commission, the ABC, is biased in some ways against what we might call the conservative side of politics. No doubt it's a 'water-cooler' or 'front-bar' talking point around the country.


I'm avoiding that debate but I do use it as a round-about way of providing a bouquet for the ABC for its website Ramp Up - an extensive resource and current affairs/ opinion site on disability issues.

We've reported before on articles from that website, most notably on broadcaster and comedian, Stella Young and her excellent appraisal of the Tasmanian push for euthanasia.

Hat tip to Craig Wallace, president of People With Disability Australia for alerting me to an excellent further reflection on Ramp Up by Dr George Taleporos, called Dead is not better than Disabled.

By way of some background, the death of a man in Sydney recently from what we once called a 'king hit' (now known as a 'coward's punch) in a street at night has drawn condemnation from across the country and calls for action on all sorts of related issues such as hotel opening hours etc.

Dr Talaporos takes exception at comments regarding the victim as they relate to people with disability.

Dead is not better than disabled

Dr Taleporos
Following the one punch attack of Daniel Christie on New Year's Eve 2013, media reports appeared about the consequences of street violence and acquired disability. In a recent story published in The Age, neurosurgeon Professor Andrew Kaye spoke about disability as a fate "far worse than death".

The impact that this kind of coverage may be having on societal perceptions of disability concerns me.

In the article, Professor Andrew Kaye says, "Frequently young men will either die and that's the best of it for them ... Or they're lying in bed with no function at all, not able to communicate, with no function of their bowel or bladder, not being able to eat, being fed by tubes."

In The Age's online video interview with Professor Kaye, he adds, "It's just a living hell. Living hell for the patient. Living hell for the family. That's far, far worse than death. That's like a death every day for the rest of their lives. It is the worst thing you can imagine, but it's so bad most people can't imagine it, and certainly most young people can't imagine it unless they've seen it."

The use of fear is an effective tool for instigating behaviour change, the classic example of this being the Grim Reaper campaign of the 1980s. While initially praised for its impact on raising awareness about safe sex, it is now blamed for creating fear and prejudice against gay men.

It's been my experience that the media has also done a damn good job of creating fear of disability. I believe stories arguing for the legalisation of euthanasia and about the impact of drunk driving or street violence make disability look as horrid as possible to get their point across.

For instance, last year's coverage of the Tasmanian Assisted Dying Bill relied heavily on negative representations of disability to build a case in favour of the bill. In an ABC 7.30 report from last October, a Queensland woman with motor neurone disease said, "Well, let's put it this way. I can use my left hand, my right hand is just about useless. If I can't use my left hand to wipe my bottom, then I can do nothing else for myself. That means someone has to do everything for me. I couldn't bear to live like that."

As someone who has never wiped his own bum, I can say that the disability tragedy story perpetuated by the media is just one perspective. While it serves to raise awareness of the challenges presented by disability, as well as the importance of thinking about the consequences of street violence, it also comes at a cost.

Every day people are diagnosed with disabilities, parents are informed that their child has a genetic disease, and people wake up from comas to find that they can't feel their legs. Their perceptions of disability will influence what happens next.

Last November, American Tim Bowers woke up after a hunting accident and was told by doctors that he was paralysed from the shoulders down and dependent on a ventilator to breathe. Tim chose to end his life rather than live with a disability. He believed that disability was a fate worse than death.

While the media continues to perpetuate fear of disability, community attitudes towards us will remain one of the most significant challenges that we face. People tend to hide away and reject what they are afraid of. This leads to discrimination and marginalisation, which is a common experience of people with disabilities, as the Australian Government's Shut Out report from 2009 shows.

Disability is a multi-dimensional experience. I find myself fighting the system every other day. On the other hand, I get to see the world from a different perspective, I feel like I have a meaningful life full of unique experiences, not to mention scoring awesome parking spots.

I fully support a campaign to educate young people about the consequences of excessive alcohol consumption and street violence. However, the campaign must not be based on the message that you are better dead than disabled.

Dr George Taleporos is a disability rights advocate with expertise in access and equity and disability service reform. He has a physical disability, a Ph.D. in Psychology and an Honours degree in Sociology. You can find him as@drgeorgethecrip on Twitter.

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