Speaker by Various Artists

51

Of rights, choice, money ... and buses

by Philip Patston

Not many people talk about what they might do if they got hit by a bus. Given the state of public transport in NZ, perhaps that's not surprising. When you think that it's a possibility for everyone, it gets more intriguing. Life could change quite dramatically and quite quickly. But you better hope you don’t get hit by a bus, because the NZ Government is hellbent on restricting your choice of who could be paid to support you if you sustained a short- or long-term injury as a result.

The Crown will appeal the decision of the Human Rights Review Tribunal which, earlier in January, found that the Ministry of Health discriminated against parents of disabled adults because “they are not allowed to be paid for the services they provide to their child (or children) while anyone else providing the very same care to their child (or children) is able to be paid.” Health Minister Ryall has said the decision could “open the floodgates to potentially thousands of claims for ACC short-term injuries where people leave hospital but still need care and a family member is willing to provide that for a payment.”

But, the Tribunal did not accept that “the financial impact of paying family members currently excluded would be unsustainable.”

So, who’s right and what’s more important? Human rights or economic sustainability? Obviously the Government thinks it is right and economic sustainability is more important. Well, I disagree. I think they are equally important and that the Government does not agree with me is discrimination in itself – discrimination born of dysfunctionphobia.

What is dysfunctionphobia? It’s the fear or hatred of losing function and, unlike homophobia for example (the fear or hatred of same-sex love and attraction), dysfunctionphobia goes unchecked in society.

You have it. So do I. But you probably have it worse than me unless you use the identity label “disabled” or “with disability” and/or are extremely self-aware. I say that not to be self-righteously arrogant. I say that with 20 years training and experience in counselling, therapy, human rights, diversity, social work and business; and a keen interest in human behaviour, quantum physics and change.

I’ve pretty much dealt with my dysfunctionphobia, though I would be bummed out if, by virtue of being hit by a bus, I lost the capacity to close my eyes in the presence of ugly people.

I jest.

A wise society would accept the potential inevitability that through birth, accident, illness or aging we’re all functionally incompetent or incapacitated at some point in our lives. We would design environments, systems and structures that accommodate functional diversity.

That’s just not sensible.

Having worked with (but not for) the Ministry of Health for a number of years in different roles, I can tell you there exists a culture of fear and indifference towards the experience of impairment – at best it is displayed as well-meaning ignorance, at worst, professional arrogance.

I don’t mean that everyone is scared, indifferent, stupid and arrogant. But synergy creates the culture, if you know what I mean.

It is manifested, as stated in the Tribunal decision, in the expectation that families should provide, indefinitely, unpaid “natural support” to adult children; in the belief that disabled people should be excluded from professional or commercial family relationships because they are disabled, even though such relationships have existed for generations in family businesses; and in policies that blatantly act against the Government’s own Disability Strategy.

The decision also highlights an unacceptable level of incompetence in the policy-making process: the Tribunal found “no evidence to show…that the financial impact of a policy to pay family members…would not be sustainable. Certainly, a detailed assessment does not appear to have been undertaken…”

I’m seriously not surprised.

The Minister’s resolve to appeal the decision echoes the Ministry’s meagre attitude towards disabled people and their families, if you ask me. It places economic imperatives before social responsibility. It assumes the worst about human nature. It displays a complete lack of benevolence from our country’s leadership. And it demonstrates a total denial that this policy could, at some point in time, affect his own family.

The case is about choice, rights and generosity. It’s not about whether parents are going to exploit their disabled adult children – some will, most won’t. We don’t stop people driving because some drive drunk – we deal (with varying efficacy, admittedly) with those who do.

It's not about other people. It's about you, your family, friends and neighbours. Everyone needs to be selfishly concerned about their own potential situation.

And it is about money. But anyone who thinks it’s just about money, including the Minister of Health, needs to consider how his life might change if she got hit by a bus tomorrow – and then think again.

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Until 2008 Philip Patston identified as gay, disabled and vegetarian. These days he prefers to think of himself as having a unique experience. He runs Diversity New Zealand in his spare time. www.diversitynz.com

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