Māori and Disability: a perspective

Ko Marotiri te maunga
Ko Mangahauini te awa
Ko Whanau-a-Ruataupare te hapu
Ko Ngāti Porou te iwi

One of the most priceless things in my world is standing on my mother’s front lawn and gazing out to the Green House and beyond to Te Mawhai.  I can see the urupa at Ongaruru where my father, my maternal grandparents and some uncles, aunties and cousins lie. One day I will lie there too.

Standing behind me is Marotiri.

Shortly I will join the whānau in the backyard where the adults are indulging in raucous one-upmanship and the kids are being kids.  This has taken place countless times in the last 50 plus years.

It’s one of those rare moments when I can just be me.  I am with my whanau and they see me as:

• a husband
• a son
• a brother
• a nephew
• a cousin
• a father
• an uncle
• a papa
• an equal.

These are all positive and respected roles.

This is the life I was born to, It is where I don’t need laws and other instruments to protect me because being an integral part of my whanau does that.

Although I’d like to stand here forever, I eventually have to move.   Every step away from that place is another step closer to a world that sees me very differently.

The further I move, the greater the difference until I am at a place where I am none of the above.  My gender, my ethnicity, my age, and my impairment all conspire against me.

Instead of me standing in my own mana, I am saddled with the unfair negative stereotypes of others.

To correct that, I am protected by the Universal Declaration of Human Rights, International Covenant on Economic, Social and Cultural Rights, International Covenant on Civil and Political Rights, International Convention on the Elimination of All Forms of Racial Discrimination, UN Declaration on the Rights of Indigenous People, UN Convention on the Rights of Persons with Disabilities, the Tiriti o Waitangi, Human Rights Act, Bill of Rights Act and a plethora of others.

These are meant to prevent discrimination and change behaviours.  This could take generations before they aren’t needed.

In the meantime, we have institutions like the judiciary, the Government, the United Nations and the Human Rights Commission.

The Commission knows Māori issues really well and disability issues to a slightly lesser degree.  Therefore there is mutual benefit for us to support the Commission to improve its capability around disabled Maori.

For many disabled people including Māori, by the time we complain to the Commission we’ve gone through a whole process that started with discrimination through to convincing ourselves that, with everything el se going on in our lives, it’ll be worth the effort.

It’s this that the Commission has to be cognisant of.

The other thing to know is that disabled Maori have tried all the ways that have supposed to improve our circumstances.

For example, until  I was 13 I went to Hatea-a-rangi.  The school supported me and, if I applied myself, I’d top my class.

Due to accessibility issues at the local high school, I moved from my home to a large institution for people with impairments.   From being the boss of my world, I was suddenly an insignificant part of other peoples’ very different worlds.

Because I  had no kaumatua to guide me, my self-taught coping skills meant I gave up things that I really should have kept e.g. te reo.  I also became very selfish as I competed for meagre support resources.

That inward focus on my own needs was also indicative of my being parted from my whānau and then being singled out.

I then tried living in the community - without supports.  This lead to an invidious choice of remaining in community or returning to institutionalised living where basic supports where provided but at the expense of fundamental rights and responsibilities.

I did choose the community but it was very tempting to opt for the physically easier alternative.

Reflecting on my experiences, I’ve been thinking about our mostly Euro-centric dominated world and the movement towards individualism and supported disconnectedness from other people like whanau and neighbours.   The earthquakes in Christchurch have shown that the first tranche of supports aren’t necessarily going to be from contractors.

The more I think about it, the more uncomfortable I feel about having to separate myself from others.

My uneasiness is around the concept of needing to sacrifice naturally occurring supports for artificial systemic supports which may not allow you to live the life you want.

As a Māori with impairments I’ve come to realise that I am best supported by whānau.   To do this though, my whānau may need support as well.

ui for Māori to discuss disability issues will be held at Makaurau Marae from Friday 22 June in the Auckland suburb of Māngere. Jointly hosted by the Human Rights Commission,the Disabled Persons Assembly (DPA), and the Mana Whenua of Makaurau Marae, the hui Ngā Tapuwae o Hape (the Footsteps of Hape) will focus on how to improve the rights of all disabled people. In each age group Māori are more likely to be disabled than non-Maori.

Hui details

Friday 22 June - Powhiri  2pm
Makaurau Marae, 8 Ruaiti Rd
Ihumatao Māngere, Manukau City

For RSVP or further information please contact : Leilani Thompson-Rikys  email: leilanit@hrc.co.nz or call 09 375 8642

A hui promoting mana enhancing narratives and leadership by disabled Māori is to be held on a marae where the ancestor Hape was disabled (see story below). His was a journey from exclusion to leader, rangatira and now tipuna.  We hope to hear at the hui, and through the kōrero it generates throughout the motu, more narratives, both personal and traditional, that enhance the mana of whānau hauā.

Also I will be attending a hui commemorating Māui Pomare, a national leader who as a child acquired a limp as the result of the invasion of Parihaka. He subsequently went on to lead a balancing journey between te ao Māori and the world of modern science. Parihaka, a global leader in the journey towards peace and human rights, has other narratives of disability.

As for all disabled people, challenges remain for disabled Māori, in general society and in te ao Māori.  Would Māui be able to express his rebelliousness and defiance through creativity, and achieve all he did, or would he be representative of the education system's "tail of underachievement" and be given a label of ADHD and a dose of Ritalin?  Would someone hearing the voices of ancestors be listened to, supported? Or would we first discourage, constrain, and medicate? Would someone walking in the footsteps of Hape still be left out of the waka? Would his use of the modern day equivalent of the supporting stingray, a support dog (now sometimes known as a kaiāwhina recognising their similar role to a support person), be accepted on marae? Can we build a support system where whānau support disabled family without being financially disadvantaged? Can disabled Māori get jobs?

Through dialogue, disabled non-Māori and their communities will learn to embrace the common ground, the aspiration of rights of citizenship and self-determination, we share with tangata whenua. First, our founding document, the Treaty, is about all of us. It is also the commitment of two peoples to take the best care of each other. Central to each of us is our unique life force, and a need for tūrangawaewae, a place to belong.  New mana enhancing models of supporting disabled people are based on similar principles to Whānau Ora.

The New Year brings a new dawn, opportunities for new kōrero and new alliances. From manahau to mana hauā, the mana of disability and disabled people, Ka pō, ka ao, ka awatea.

Paul Gibson
Disability Rights Commissioner - Kaihautū Tika Hauātanga

The ancestor Hape’s story is one of strength despite being cast aside. The Tainui ancestor’s name literally means ”club foot” and as Ike recounts it, when the time came for the Tainui waka to set sail from the ancestral homeland of Hawaiki to Aotearoa, the people were asked to pass a test in order to get a place on the waka. Ike says Hape failed this test, due to his clubbed foot, and he was left behind in Hawaiki.  The waka carried on its journey to the shores of New Zealand. The journey was long and soon many of those on board forgot about Hape.

When they landed on the shores of the Waitematā Harbour they received a reminder.

As the people disembarked they could see a man standing on the hill in the distance.  It was none other than Hape, the man they had left behind.  Hape, who some say, travelled by stingray to Aotearoa, had arrived weeks earlier. He stood on a hill and called to those who had left him behind on to the land. The event was known as Te karanga ā Hape, and where it occurred is now Karangahape Road, or K'Rd in Auckland.

“I have recently returned from Toronto where we met with people involved with the Disability Convention. They discovered that there is a gap in the convention in that it does not respond to indigenous people with disabilities.”

She says Māori people with disabilities are underrepresented in the disability sector. “They don’t have a strong voice.  They are not given enough prominence in their own culture. Huhana explains that these people are seen as part of a whānau, not someone with a disability so often modifications and exceptions aren’t made for them. Huhana says she had noticed that when someone begins to rely on a wheelchair and is under the Ministry of Health – not ACC – they can’t afford a proper van so can’t get to their marae.  “That means they lose touch with the core part of what makes them Māori – their land, language and whakapapa.”

Huhana says there is a responsibility for people to be aware of what support is available.

“I want Māori to understand what is out there for them and what they are entitled to when they have a disability.  Often even their doctor and community aren’t aware what resources are there for them – be it under ACC or the Ministry of Health.”

Huhana cites an example of how poorly health information can be communicated. “The Deaf community thought people got swine flu off pigs as they couldn’t hear how people were contracting it!”  Te Roopu Wairoa a trust established by Māori with disabilities produced a video using New Zealand Sign Language to explain the real issues with swine flu.

Rangi says the plan is to consolidate the services across the country and increase collaboration in regions.

He says, “There has been suffering for some Māori in this category as they are forced to be accommodated in a larger group as opposed to the close working relationships with whānau that used to occur.”

He’s worried that in a few months or so this could result in a negative outcome for Māori with a mental illness. “Time will tell how it affects Māori mental health consumers. There are positive organisations in place that focus on whānau and positive mental health, but some of the smaller players are not there anymore. The focus on Māori families with mental illness is important.” Rangi believes Māori would rather go to an organisation providing specific services for Māori whānau than seek help from a mainstream provider. “We are working on improving access to Māori health providers and that includes spiritual, mental and physical dimensions – we know how to bring them all together to improve access for our people.” He would like to see this type of Māori focused service be available nationally rather than just in certain pockets of the community.

“The focus of the project is to enable all whānau to become fully functional participants of marae hui instead of mere observers,” says Waikato DHB Population Health promoter Maraea Nikora. “That can’t happen if they can’t see or hear what is going on or if they can’t access certain parts of the marae due to limited mobility. The toolkit offers information about understanding disability and accessibility when building or redeveloping certain parts of a marae.” She says it also includes checklists for different areas of the marae, legislation versus good practice and relevant references and links. Originally the project group partnered with trustees from Te Kauri Marae in Huntly, and it has undergone a large scale redevelopment and building project to increase disabled accessibility. The kit was presented to the Māori king, Kingi Tūheitia and the Te Kauri Marae chairman. Since then numerous marae have looked at the toolkit and changes are slowly being made to make marae more accessible for people with disabilities. Earlier this month the Minister for Disability Issues, the Hon Tāriana Tūria, supported the project.

“Our marae are a cornerstone of our identity as Māori. They are the place we go to meet, a place to mourn those we have lost, and a place which connects us to our wider hapū, iwi,and whānau. Many people with disabilities face difficulties participating in activities on the marae, and I know that many marae across Aotearoa are working hard to increase the accessibility of their facilities, to ensure that every member of their community is able to take part in hapū affairs. She says government funding is available for marae to make the most of the toolkit. The Lottery Marae Heritage and Facilities National Lottery Distribution Committee, administered by the Department of Internal Affairs, distributes funds towards marae capital works and conservation.