Whānau Hauā or Disabled which is it to be?

Whānau Hauā or Disabled which is it to be?

‘ it was ability that mattered, not disability, which is a word I’m not crazy about using’ Marlee Matlin

I live my life with an impairment although not with a disability. I identify as both Māori and Aborigine and have been diagnosed with having Multiple Sclerosis which is a progressive condition. I mention this as while I self-identify as Huhana, many people continue to see my wheelchair first, which personally does not define me. The term ‘disabled’ is a political identity and one that was socially constructed. I do not like the word disability as it negates the word ability something I believe I do not lack. If this word is a political word, then why must I be seen to identify with such a negative term?

To explain why this word is something I am uncomfortable with, I feel we need to outline briefly what the ‘social model’ of disability is. Since the Industrial period of history there have been a lot of different models of disability with the latest model picked up by New Zealand policy makers being the ‘social model’ of disability. The social model is a model that says that society has the disabling attitude not the disabled person themselves, and with the social model the aim is to change society to make a more accessible environment.

While it is agreed that society has the attitude, I know some disabled also have the same attitude around disability as society. After, all even having an impairment doesn’t mean we naturally have a better attitude towards it as we are not all political people ready to embrace the political aspects of disability. Māori are one group who are also generally not appreciative of the political arguments around disability. I have to wonder if this is because we think of disability differently.

What many don’t realise is that Māori or indeed indigenous people generally, do not view disability in the same way as non indigenous and I think they may have a point. Māori do not have a romanticized version of disabled persons, it is simply that prior to colonization disabled Māori did not have a word equating to the term ‘disability’ and they mostly held positions within their community. They were not separated out to be seen as freaks or oddities for society to shun.

Tariana Turia, co-leader of the Māori Party describes it well when she talks of her brother who was a tetraplegic, the whānau would pick him up and carry him around if he needed to go somewhere that was inaccessible, she did not realize until years later that while they thought they were doing the right thing, they were also taking away his own independence by not making his Marae environment accessible to meet his needs and allow him his own ability to get around independently.

It was not at the time clear to Tariana and her whānau in the same way it is not clear to many Māori that by doing things for our whānau hauā (disabled Māori), we take away their independence. While well meaning, it does not encourage them full community participation. This point is important however as the impairment was seen by the whānau as a natural part of life, and it is this naturalness, that Māori related to, not the social construction the Pakeha argue.

It is this tension between the taha Māori (Māori world) and taha Pākeha (Pākeha world) that continues to create the divisions that exist between Māori and Pākeha disabled today. For me to better understand that, I am drawn to Hone Tuwhare’s poem ‘Rain’ which talks of how the natural environment and impairment are both as natural as each other. Hone talks of the impairments of senses and how they are impacted when they encounter rain. He begins by outlining these senses and how they interact with rain, he states

I can hear you
making small holes
in the silence
rain
It is this link with nature that Hone clearly begins with in his poem before he goes on to make analogy’s with the senses and nature (in this case rain). Hone makes a very clear description of what rain would feel like if there is an impairment. In his next set of lines, he makes the statements that even with impairments, rain would still create a sense of knowing for those whose impairments impact on their ability to see, hear or taste. It is these statements that show the insight of how even nature works with impairment and that it doesn’t matter because the person with the sensory deprivation in one area will still know of rain as the other senses will kick in.

If I were deaf
the pores of my skin
would open to you
and shut

And I
should know you
by the lick of you
if I were blind

the something
special smell of you
when the sun cakes
the ground

the steady
drum-roll sound
you make
when the wind drops

Yet, despite these impairments in Hone’s poem that are affected by rain, the rain itself does not deny the impairment or the ability to know it by its touch, its taste, its sound. Even if all these senses went, rain cannot be denied as it will still exist because we would still recognize it as it washes over us.

But if I
should not hear
smell or feel or see
you

you would still
define me
disperse me
wash over me
rain

(Hone Tuwhare 1922-2008)

I particularly like Hone’s poem as it succinctly outlines how natural rain is or more broadly how natural our environment is and that it is as natural as an impairment can be for many of us. Impairment is not an oddity nor is it something to be shunned, that to be blind, Deaf or to lack taste, is as normal and natural as the elements of nature. In some ways, this can also explain why Māori prefer the term ‘whānau hauā’ as a term to describe someone with an impairment because it describes Māori disabled as being whanau first and their impairment is not about disablement or about any societal attitudes, it is about how the environment impacts on them as Māori who happen to have an impairment. It is also an appropriate term as it outlines te taha Māori beliefs and values.

Māori do have attitudes around disabilities which is influenced by a mixture of post colonial biblical influences and by older values impacted by the colonial influences that have impacted on everything Māori. To explain this impact, I have identified approximately four different attitudinal beliefs with Māori around disability. The first attitude I found was where those who were born disabled may sometimes, if the disability was too significant for the survival of the individual or community, then they would terminate that life. The next attitude is those born disabled where survival was guaranteed where your disability did not impede the ability to be a productive member of the tribe, such as being visually impaired, hearing impaired or Deaf, or having an intellectual impairment. Thirdly is the attitude with war induced disability, if you survived a battle but retained a disability then there was no question of your place in your community and you not only survived but you were also cared for. Finally, age related disabilities, where the normal consequence of aging left you with disabilities, these were seen as a part of life and again you would be cared for by your tribe.

One thing that has remained, although even impacted at times by colonial interpretations of the stories are the stories of our immortals such as Maui who was born wai hapi (club feet), premature and with possible ADHD if we were to medically analyse him today. Muri-rangi-whenua was blind, Deaf and physically impaired through age, she gave the magic jaw bone to Maui, Mahuika was the Goddess of Fire and she was blind. These are just three examples of the immortals who had impairments, yet they were integral in the foundational stories for Māori. This is also a good example of the naturalness of impairment and through these stories we could learn a lot about impairment and Māori thinking of that.

For me, disability is as natural as every other aspect of our lives and being Māori enforces that belief. The barriers I encounter are because of modern environments and attitudes that do not create accessibility or inclusivity for whānau hauā to participate in society. This is an issue as many of our whānau are not politicized to understand what their rights are and what their entitlements are hence their struggle to not only survive day to day but also remain under-respresented in disability networks around the country and globally.

I have often found a resistance from disability networks to embrace whānau hauā on their own terms, they try to make Māori fit within the disability policies and frameworks, yet each time they fail. Whānau hauā have said they want to be recognized for being Māori first, their disability just happens to be an issue when they need equipment or access to services. The UN Convention on the Rights of Persons with Disabilities in Preamble P gave recognition to the extra marginalization indigenous peoples with disabilities experience and the UN Declaration on the Rights of Indigenous Persons Article 22 also recognizes the issues experienced by Indigenous persons with disabilities. Yet, so far internationally, minimal attention has been paid to increasing their representation locally, regionally and globally.

Whānau hauā who dont connect to their Māori or whanau identity do not often get this and may identify as being disabled which could in effect be a form of colonisation as it was through the colonial process of christianisation and medicalisation that the Māori identity of disability was first altered. if we follow this logic, then it stands to reason that Māori disabled are, because of colonisation disconnected from their ability to have a positive identity as they are forced to embrace words like disability because of a lack of understanding and knowledge around Maori concepts of disability.

It is important now more than ever for whānau hauā to come in from the cold politically and claim the identity they wish to identify as. It is important we reclaim our natural place in society as contributing Māori members who are as deserving of our community as we are of our entitlements. I know I look forward to the day when I can claim my place fully as I choose it to be.

‘not everything that is faced can be changed , not everything can be changed until it is faced.’ James Baldwin