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Posted by Philip Patston on 9 January 2010, 3:58 pm in , , ,

Minister affirms dysfunctionphobia in bid to appeal rights decision

They say the test of a society is the way it treats its most vulnerable. I would say the test of a Government is the way it responds to landmark decisions of its human rights authority.

Minister of Health Tony Ryall said last night the Government will appeal the decision of the Human Rights Review Tribunal, which 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." Ryall 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." (NZ Herald)

Ironically, the Tribunal did not accept that "the financial impact of paying family members currently excluded would be unsustainable."

So, what's more important – human rights or economic sustainability? Obviously the Government thinks it is the latter. Well, I think that is discrimination in itself – discrimination born of dysfunctionphobia.

What is dysfunctionphobia? It's the fear or hatred of losing function and, unlike homophobia (the fear or hatred of same-sex love and attraction), dysfunctionphobia goes unchecked in society. In fact, where in the 21st century, overt statements against the right to be gay is considered less and less acceptable (at least in Western society), anti-impairment sentiment, in the form of cliches like, "There, but for the grace of God, go I," or assumptions that living with "abnormal" function is tragic or traumatic, is still sanctioned in all cultures and in all societies. I've even been publicly challenged for suggesting impairment could be a positive lifestyle option.

The reason anti-impairment ideology is so accepted is unsurprising, yet goes mainly unacknowledged. Of all minority groups, the "disabled" group is the only one anyone can join at any time with out making an overt choice to do so. (Of course anyone can wake up realising they are attracted to the same sex, but they have a choice as to whether they make this revelation public or not.) But get hit by a bus and end up in a wheelchair, or with a brain injury or anxiety disorder as a result, and your change in situation and status is common knowledge, whether you like it or not.

A wise society would accept this potential inevitability – not to mention the outcome of aging – and design environments, systems and structures that accommodate functional diversity. Sadly fear and denial of change has created a societal design that upholds an unreal notion of physical and emotional perfection as normal, excluding those who fall outside these conventions.

Reading the Tribunal decision reinforced for me what I have seen for 20 years working in the disability and wider community sector. Inside the Ministry of Health exists a culture of indifference towards the experience of impairment – at best it is displayed as ignorance, at worst, professional arrogance. It is manifested in the expectation that families should provide, indefinitely, unpaid "natural support" to adult children; 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 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..."

But more disturbing, in my opinion, is the lack of generosity displayed in the policy bungle behind this case. The apparent absence of robust research only leaves me to surmise that the rationale behind the policy has been that families don't deserve to be paid or (lest I myself am accused of being ungenerous) can, and indeed should, make do without.

The Minister's resolve to appeal the decision echoes this meagre attitude towards disabled people and their families. 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 unawareness that this policy could, at some point in time, affect his own family.

I began by saying the the test of a society is the way it treats its most vulnerable. But I disagree in part. Disabled people are not vulnerable – we're strong. We have to be stronger than most, in fact, to endure the kind of treatment this case exemplifies. I am thankful to and honour the people who took this case to the Tribunal – they did it on top of surviving in the face of discrimination. The people responsible for this discrimination need to think hard about how they have missed an opportunity to create a more generous society.

And the Minister of Health needs to consider how his life might change if he got hit by a bus tomorrow.