Whānau hauā and disability advocate, Dr Huhana Hickey. Image: lifeunlimited.net.nz

What will it take for people with disabilities to be represented in our democracy?

From better access to New Zealand Sign Language on the marae, to being visible in Parliament – disabled Māori need to be better represented in our democracy, argues disability rights advocate Kera Sherwood-O’Regan.

There’s something about making your mark on that clean sheet of paper. It’s the chunky felt tipped markers that hark back to primary school days, contrasted with the harsh grown-upness of making a decision that will affect the future of your entire country. It’s the low hum of the whole hall filled with community, and the omnipresent orange elections guy forcing the optimism into your fingertips as you draw a confident tick. At least for me, casting a vote in the national elections feels like a small success, a completed duty of citizenship that I can cross off my list for another few years.

Voting is just one small part of engaging with our democracy, and critical as I might be of the mandate for such a system (team #decolonise over here), it feels like an important step to building an Aotearoa that reflects the values I hold dear. In the absence of full governmental recognition of our tino rangatiratanga, as a bare minimum, we are meant to have a democracy that is founded on fairness, and direct representation. While MPs might be the ones in the debating chamber, ultimately, they are accountable to us, and that chubby marker tick is the mandate for them being there.

But can this democracy really be fair and just when up to one in four Kiwis are not being directly represented?

No, hold back your excitement. At last check, Aucklanders are still well and truly represented in all facets of our democratic system, but the one in four Kiwis who have disabilities may not be. That figure, by the way, jumps to one in three when it comes to our whānau hauā Māori.

Despite being a diverse group the size of our largest city, persons with disabilities (PWD) are faced with systemic exclusion in many areas of life. Just as structural racism shapes the opportunities, possibilities, and realities of tangata whenua in this country, institutionalised ableism has a massive effect on the realities of PWD. Along with many -isms, ableism and racism intersect for our whānau hauā, compounding existing issues, and creating additional challenges that must be navigated on a daily basis.

I spoke with Dr Huhana Hickey, a prominent community leader and advocate for the rights of whānau hauā about what this means for Māori. There is no shortage of examples, and certainly these oppressions are not restricted to te ao Māori, but one that struck me was how whānau hauā may be excluded from participating in their marae.

She explains that access to marae is not only about ramps and bathrooms, but also ensuring that service animals are allowed on marae, that people have access to appropriate ablutions, and that there are “enough trilingual interpreters for the over 13,500 turi whānau in need of NZSL sign.”

However, she is clear that access to marae is only one part of ensuring the cultural rights of whānau hauā are upheld, sharing her own story of disconnection from her whakapapa and cultural identity.

She says, “I identified as disabled first, before I really knew my Māori identity. Many whānau hauā of my generation were removed at birth and adopted or institutionalised. I was adopted and it was a transracial adoption, and with the adoption removing my mother’s ethnicity, they effectively stole my identity. This is common for many hauā Māori in that they were often removed and taken from their parents, placed into families with no understanding of te ao Māori.”

While physical institutionalisation may no longer be practiced formally, its effects persist for many hauā, and there are still legislative challenges that result in discrimination. One such example prevents whānau members who care for whānau hauā from being paid for their work. Other legal loopholes include the fact that people with disabilities can be paid less than minimum wage, and many more, all contributing to a situation where whānau hauā are commonly excluded and marginalised, rather than being recognised as valued members of society.

But it wasn’t always this way, and nor does it have to be.

Dr Hickey views this exclusionary status quo as a symptom of colonisation, saying “There is a severe lack of understanding of Polynesian concepts of impairment… [pre-colonisation] most were included within their pā and community. They had roles. They were whānau, and therefore a natural part of their community.”

She also emphasises the role that Christianity has had in excluding hauā. “Many whānau use Deuteronomy 21 to justify their exclusion of their hauā whānau, [claiming] that we carry the many sins of our ancestors.”

Most Kiwis would be shocked to hear the endless examples of discrimination faced by whānau hauā, so how do we overcome it?

Hickey believes that direct representation is imperative to advancing the rights of whanau hauā and ensuring self determination and autonomy. She stresses the importance of direct representation at all levels of decision making – from whānau, hapū, and iwi, to national governance, and all the way to the United Nations.

This is a view shared by Aotearoa’s first deaf MP, Mojo Mathers, who entered Parliament in 2011 with “no support of any kind” to fulfil the requirements of her role.

From being advised to not disclose that she was deaf, to not having any captioning or sign language support when she started work, Mathers recalls her experiences in a new short film, Hear Me Out, part of the 2018 LoadingDocs impact documentary programme.

Mathers echoes the need for greater direct representation of the deaf and disabled community in politics, and, sharing many of Dr Hickey’s concerns hopes to see more whānau hauā in Parliament in future.

She hopes that the Election Access Fund Bill, which she drafted days before losing her seat in the 2017 General Election, would help to make the path easier for future candidates to directly represent their community. Now with no Parliamentarians identifying as members of the disability or hauā communities, the pressure is on to ensure that disability rights do not fall off the political agenda.

Now sponsored by Green MP, Chlöe Swarbrick, the bill would create a fund that people with disabilities could access to address barriers to their participation in Parliamentary politics, with a goal to creating a truly inclusive and accessible democracy. Funds could be used to cover expenses such as NZSL interpreters, captioning, mobility assistance, and other needs to equally participate in elections.

With a second reading due before Parliament in early 2019, the future of The Election Access Fund Bill still hangs in the balance. Dr Hickey emphasises the need for whānau hauā to be included and consulted, and Mathers stresses the need for the community to show their support to get it across the line.

As part of the Hear Me Out film outreach, community workshops and screenings will be taking place around Aotearoa to foster discussions around disability rights and political representation, with a goal to increasing support of the bill at its second reading. Whānau hauā are especially encouraged to express their interest in joining these events.

If we really want a thriving, and inclusive democracy, we must ensure that people with disabilities are at the decision making table, and in the chamber seats.

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