Category Archives: Inclusion

Portrayal of disability in the arts and the media is a perennial and important issue if disabled people are to feel like equal and valued members of the community.  Portrayal issues are as important as access to the arts and media.

Last Thursday morning’s RNZ Summer Report featured a group of young people in Masterton talking about their production to help with confronting the loss of their peers through youth suicide.

Their play Smoke and mirrors presented scenarios with the themes of hope, purpose and belonging, powerful and universal concerns for young people.

In one scenario, a young man sees a shadow in the mirror, a blind man, a metaphor for his “blindness” to his own considerable potential, and his “tunnel vision” view of a meaningful future for himself.

The use of blindness and low vision in this way in such a sensitive situation and subject came as a shock. It was quickly followed by sadness to find myself encountering a new generation, albeit I hope unintentionally, perpetuating the myth of blindness and low vision as a wholly negative and life-limiting experience. It was hard to listen to that.

As a young vision-impaired person I was nearly defeated by those very fundamental questions of hope, purpose and belonging. If I was a young person today, struggling with them, how would such a play resonate with me? What kind of message does such a portrayal give to depressed blind and vision-impaired or other disabled young people?

We know very little about disabled youth and suicide in New Zealand. We have no information readily available, not uncommon in relation to disability. We do know that disabled people are amongst the poorest, and suicide rates are higher in the most deprived areas, and that men and Maori have higher suicide rates than women and non-Maori. (Ministry of Health.)

The disability section of the Lowdown youth and depression web site looks promising but delivers little. It is very wordy, links within the website occasionally fail to work, and no Sign Language or easy read information is offered. There is also no guidance about the accessibility or appropriateness of general services.

We have ample evidence of the devaluing of disabled lives every day in the media and in the experience of disabled people. It would be helpful to see more realistic portrayals of disabled people, and for them to be meaningfully included in campaigns such as suicide prevention and depression support.

And portrayal of disability and disabled people doesn’t have to be inspiration porn. But it must be respectful and it must be real.

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Because this year is my Year of Serious Writing I have been reflecting on writing about disability. You could say I have been writing about disability for many years, and I have, but writing from a deeply personal perspective and exploring events, memory and distance in place and time is very different from journalism, reports, blogs on information access and related themes, even speaking notes.

As if writing about memory and the past are not difficult enough, writing about a life with disability is more so. Drawing the meanings and lessons complicates my task even more.

I must explore and create my truth through a language that shifts and flows, an unstable country, a language that seems in some ways not up to the task and in others so nuanced and complicated that I may drown.

For example, when I think about the everyday language we use in the disability world I encounter problems. The words “disability” and “impairment” themselves are deeply contested, never mind such phrases as “the lived experience of disability.” The language used is also littered with medical and sociological jargon. I had to explain what DNR meant recently on Facebook. ( It means do not resuscitate, instructions sometimes found on a medical file.) My fault for using jargon.

The “social model” of disability which is a strong thread in disability identity is not well understood, either within or beyond the disability world. Sociology and psychology, even religion describe disability as object rather than subject. Medicine defines body as machine. None of them take real account of meaning for the heart, soul and spirit.

Internalised stigma and ableism, by me and the reader also complicates the writing process. We have all internalised social oppression that declares disability to be undignified, the “fate worse than death” scenario most disabled people steadfastly deny in the face of prevalent community incomprehension. We often feel like second class citizens in our own country. That has interesting implications for a writer.

The disability human rights and equality on which I have focused so much of my life’s work and commitment are also contested subjects. They are couched in frustratingly legal terminology. Terms such as “reasonable accommodation,” (the degree to which an employer, education provider, retailer, transport and other services and so on must meet the disability requirements of their customers,) have a degree of currency. But that term in particular is legalistic, grudging and ungenerous, lacking a warm and wholehearted welcome, calling into question another contested word, “inclusion”.

I also have to negotiate the “poor me,” “aint it awful” pity scenario and its equally unacceptable opposite, “disability porn,”  two extremes so popular in the media and a trap for the unwary writer.

For me it has become increasingly necessary to travel beyond the clinical, the medical, the legal, the sociological. I have to banish stigma and negative belief to excavate the more dangerous depths of meaning.

It’s a scary enterprise for a private person. I may uncover sadness, rage, rejection, even shame in those depths. But memory can discover surprise and delight as well as pain. There is also joy, humour, friends found and strength drawn from a strong sense of community.

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