Category Archives: Disability Issues

Ableism and history

I’m always interested when I see something about history that includes a disability element. So I was both intrigued and shocked to read about a nineteenth century soldier with a “facial disfigurement.”  I was shocked, not because of the subject, but because of the ugly value laden and ableist language used to describe an injured man. The story sounded interesting, but the language in the first paragraph got in the way.

I’m sure Te Papa staff are clear about the use of racist or sexist language in public historical discourse. They should have an equal understanding about other kinds of denigrating, value-laden language in what I would expect to be a neutral and respectful environment.

Facial difference is a particularly sensitive subject, open to ridicule and casual cruelty, and therefore needs tact and respect in description. When discussing a subject where the injury is relevant to the narrative, language should be kept neutral in this context. Using “othering” or “freak show” language demeans the person, perpetuates harmful stereotypes, and is as damaging as ignoring disability in history altogether, as is mostly the case in New Zealand.

It disturbs me that such a prestigious and influential cultural institution as Te Papa should be so ignorant, careless and unthinking to describe someone who can’t object in this way.

In this context it is important to hear the voices of those who are directly affected by the use of such language and who have a clear view of the issues it raises. In this context it would have been perfectly adequate and truthful to describe the man as having a facial injury.

Stories like this one, and many others that include a disability element are very much worth telling. Disabled people are, after all, twenty four percent of the population, not an insignificant group, but our history and our stories need to be told by those who understand disability from the inside out to avoid such unnecessary and embarrassing mistakes.

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Rejecting the arms trade

Every year around ANZAC Day and more often over the last few years of remembering WW1 I have heard the pious injunction “so it may never happen again.” Every year I rail against the glorification of war, the hypocrisy and the irony of this statement.

I heard it again on Checkpoint in relation to the Passchendaele exhibition in Wellington. While thousands of people have visited the Gallipoli exhibition and have experienced a frisson of shock at the depiction of bloody and brutal warfare, few people seem to see the dreadful irony of holding what some have called a “weapons expo”- more euphemistically a “defence industry conference” – this week in Wellington. To the credit of the City Council, it has refused to allow the expo to be held in council venues. It was held in a sports venue. Is this less political? We certainly have a history of sports and politics in uncomfortable relationships.

My family have never been great warriors. I had one great-uncle on each side of the family who fought in WW1.  One came home, one didn’t. Uncle Albert never mentioned the war in my hearing, but my mother said that when he was dying he was back in the trenches at Ypres, perhaps one of the most profound experiences of his life. Many of those “returned men” had lives more blighted than his.

The First World War marked a turning point in warfare. Before then battles had resulted in most casualties being among the fighting men, but in the twentieth century it has reversed, eighty percent of casualties in the twentieth century were civilians, only twenty percent combat troops. Modern communications technology means that we can see the images of all this in our social media and our living rooms every night. We are becoming immune to suffering generally, and in particular the suffering of the human tide of refugees fleeing from these conflicts.

Modern warfare kills and disables military and civilians alike. It disables humanity, dehumanises all of us and the structures that underpin national and world order. War diverts precious resources. It destroys history and culture and causes rifts that take generations to heal.

If New Zealand is truly committed to being a nation for peace we should not be contributing to the arms trade. There could be no wars if there was no arms trade. This trade is every bit as vicious and immoral as the drugs trade. It destroys more lives on a global scale. We should not be associated with it in any way.

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Review: The Walking Stick Tree – A memoir by Trish Harris

I’ll begin this review with a disclosure. As the writer of positive remarks on the cover of this book, it might seem like overkill for me to write a review as well. After all, I’m already favourably biased. But The Walking Stick Tree warrants closer serious scrutiny and exploration from a disability perspective. This is an important book.

Book cover in turquoise, blue and white abstract with stylised wtree like walking sticks and title The walking stick Tree a memoir, by Trish Harris, in black.

This time last year New Zealand disabled people were demonstrating outside cinemas about the depiction of disability as a fate worse than death in the movie Me Before You based on the book of the same name. For the “hero” death was better than living with quadriplegia. At the time both in New Zealand and internationally there was much anguished discussion among disabled people about the need to tell better, more realistic and more nuanced disability stories. The Walking Stick Tree makes an excellent contribution to filling that aching void. It establishes a place for disability and disabled writers in the literary world in general, since the themes are universal, but it makes a place, with its familiar setting, in the New Zealand literary world.

There has long been a need for reflective writing about living the experience of disability in our local context, taking the reader beyond lifeless, stereotyped portrayals of the experience of impairment and disability. (I’m not including academic writing here). The Walking Stick Tree goes well beyond self-absorbed or cathartic writing about the disability experience, and isn’t about triumphing over disability. Nor, thankfully is there any inspiration porn. While there are excellent and thoughtful blogs written by disabled people online, there is something about a book that brings weight to the subject. The Walking Stick Tree is a disability memoir that gives that weight without stodge.

Using the paradoxical metaphor of the walking stick tree as a symbol of growth, development and creativity, Trish Harris writes thoughtfully and with insight about life lived increasingly on her own terms, as she comes to terms with living with juvenile onset rheumatoid arthritis from the age of six. She develops the story of a life well lived, not without struggle. The narrative is enriched by Sarah Laing’s drawings, which lightly and cleverly focuses the attention of the reader on the creativity which of necessity nearly always accompanies disability.

Her story resonates with anyone who has lived with impairment and disability since childhood. Trish Harris is unsentimental, difficult events and experiences are not sugar-coated, but nor does she dwell overly on the negative. A gentle humour adds a light touch to the straightforwardly written and engaging narrative.

Despite our different impairments, The Walking Stick Tree holds a mirror to some of my my disability experience, while painlessly teaching me about aspects I haven’t experienced. For other readers, it may open a window on an unfamiliar, but not alien world, as Trish explores universal themes such as coming of age, and finding her place in the adult world – experiences familiar to us all. The reader discovers that living with limitation, pain and impairment does not preclude living an ordinary life, in the best sense of the word

I enjoy a good story well told, but often look for more depth in books about disability. Trish Harris’s life story and the illustrations alone would have made The Walking Stick Tree a good read, but happily for those of us hungry for more substantial disability fare we are not disappointed. The Walking Stick Tree is greatly strengthened by the essays threaded through the text. In the four short essays Trish Harris steps back from the narrative and reflects on the meanings of the experience of impairment and disability,

The essays follow the structure of the book, with a short essay at the end of each section exploring in more depth themes threaded throughout. The first essay is about Pain, the second confronts Loss, Sadness and Grief, the third, my personal favourite, performs the Dance of Identity, and the last explores Body and Soul.

As a writer I am in awe of Trish’s ability to recall the events and details of her childhood. As a disabled person I am very aware of both the individual and the wider disability picture she creates, and is part of.  Her experience offers the general reader, an opportunity to explore one disability experiences.  When I finish a book with reluctance, and a feeling of wanting more, then it has been a satisfying read. That’s how I finished The Walking Stick Tree.

Published by Escalator Press. ISBN: 978-0-9941186-4-6

The print book is available from all good New Zealand bookshops and

Trish Harris is also a poet. She has a book of poetry due out later this year, written during and about her time as a patient in Hutt Hospital’s orthopaedic ward. That experience forms the basis for her debut poetry collection. She says, ‘I became a writer in residence by mistake. For eight weeks the hospital provided me with a room, a bed, and three meals a day.’ The resultant book,  ‘My wide white bed’, will be published by Landing Press in October.

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The right to read and The Marrakesh Treaty

Disability Issues Minister Nicky Wagner and Commerce and Consumer Affairs Minister Jacqui Dean have announced New Zealand will ratify the Marrakesh Treaty to improve access to print materials for blind and visually impaired New Zealanders.

Literacy, and easy and universal access to printed material is something taken for granted and expected in developed countries. Yet even in developed countries such as New Zealand less than ten percent of print material is available to blind and vision impaired and other print-disabled people. In developing countries it can be a little as one percent. Millions of people worldwide, including older people, working people, children and university students are denied access to books and other printed material. This is the international book famine.

Blind and print-disabled people should be able to go to a bookshop or library to borrow and read the new bestseller novel or the latest celebrity memoir like everyone else. Blind and partially sighted people of working age need to access a wide variety of print materials, including books relating to the profession or job. Children and young people want to be able to go to school and university and develop high standards of literacy as much as their sighted peers do. But life choices and opportunities are limited by a lack or low level of literacy as a result of inaccessible books. Sometimes it is about teaching and opportunity, but more often it is about access to the same range of books as their sighted peers.

Access used to be much more difficult because blind and vision impaired people needed expensive specialised technology provided by specialist organisations to access reading material, books and magazines. Now accessible content can be read on accessible “out of the box” technology such as iPhones and iPads, although specialist technology which is slightly more affordable than it used to be is still available and widely used.

In New Zealand those who will benefit from the Marrakesh Treaty are the 12,000 members of the Blind Foundation. But Statistics New Zealand finds there are a further 168,000 (4%) of people with vision impairments. Their ability to read, even with correction, is affected too. They also need books in alternative formats. There are others who, for a variety of reasons cannot access print, for example, they are unable to hold a book.

The publishing industry and public libraries have traditionally taken little account of accessibility of print material until quite recently, seeing access for print-disabled people as a specialist and charitable endeavour. This has been partly because of technical limitations and the cost of equipment and production. Now readily available and cheaper accessible means of producing and distributing books accessibly, such as mainstream audiobooks and the ePub format for print has advanced to the point where the demand for access cannot be so easily ignored. Copyright remained a thorny issue for the various interests involved.

The Right to Read is an international campaign, and the advent of the provisions for access in the United Nations Convention of the Rights of Persons With Disabilities, (UNCRPD) has given focus and urgency to the issue. In New Zealand and similar countries there are still delays in accessing important education materials such as textbooks. Many specialist, literary and more popular general book titles are not available in accessible formats at all.

The World Blind Union and others have worked hard to combat the book famine. The result is the Marrakesh Treaty, developed by the World Intellectual Property Organization (WIPO), which directly addresses the problems of copyright access. The treaty enables “authorised entities,” such as blind people’s organisations, service providers and libraries to more easily reproduce printed works into accessible formats (braille, DAISY, (Digital Accessible Information SYstem) for the production of talking books, large-print and e-books, for non-profit distribution. It will also allow authorised entities to share accessible books and other printed materials across borders with other authorised entities.

The Treaty, which came into force in 2016, will help avoid expensive and unnecessarily duplicated reproduction of the same books in different countries. It also means that countries with large collections of accessible books can share them with blind and print-disabled people in countries with fewer resources. This will help print-disabled people in developing countries, and save much-needed resources in all.

Cross-border sharing is essential for combating the international book famine, as blind and partially sighted people are among the poorest in most countries, and organisations for and of blind people often don’t have the considerable resources still needed to produce enough materials in accessible formats.

The Treaty came into force with the required twenty ratifications last year. Progress towards ratification here is slow, despite efforts by the Blind Foundation and Blind Citizens NZ. Similar countries to New Zealand which have ratified include Australia, Singapore, South Korea and Canada, The UK, EU and the US, sources of significant amounts of print material in alternative formats, are still to ratify. There is support from publishers, authors and copyright bodies in New Zealand, but ratification requires changes to the Copyright Act. With the dissolution of Parliament in August completing ratification is impossible before the parliamentary election on September 23rd.

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