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

• from the Escalator Press website
• the e-book is available from Amazon
• also from Kobo

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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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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A Declaration for Disabled People Claiming our Place

Today we disabled people here in Wellington say “this is our place too”.

We say to you this house has made a space for us to step forward to claim our place.

We will aim to live out our place in the community of humanity, proud of who we are and how we are, and in all of our diverse ways of being disabled.

We do not back away from that word in fear, in shame, in a feeling of being lesser.

We call on others in the community in which disabled people are part to include, trust and respect us, to not tell us how inspirational we are for doing everyday things. We want a fair go and a decent job.

Live with us not in fear or contempt, but in peace and harmony. It is our world too.

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I’m no Pollyanna, and recognise there is still much to be done before Deaf and disabled people achieve true equality, but a pride celebration can promote change, strengthen community, and simply be some fun together.

A group of Wellingtonians have picked up the concept of Disability Pride, first formulated and celebrated by a group of public servants in the late eighties. We said “who we are is OK, What happens to us isn’t” – in short the social model of disability. It separates a person’s impairment from the effects of a disabling society. We celebrated with a festival of film, debate, theatre and other events. Add to that a human-rights-based approach to disabled lives and a celebration sounds good.

Disability Pride is about valuing our whole selves and our experience, however we frame our identities, taking our rightful and equal place in the world, and drawing strength from one another.

Taking stock of the journey, celebrating what we have gained and looking forward to future change is a good way to finish up a shaky and tumultuous year.

Disability Pride Week begins this Sunday at Te Papa, claiming our place.

Disability Pride Week events 2016

All events are in accessible venues with audio describers, hearing loop, NZSL Interpreters present.

Sunday 27 November 2016 2pm
Launch of Disability Pride Week
Te Papa Marae (Level 4 marae)
All welcome.

Thursday 1 December
Tape Art Mural 10am – 3pm
Created on the window of Asteron Centre by disabled artists using tape
(Opposite Wellington Railway Station)
The Mural can be viewed by anyone for 5 days.

Saturday 3 December
Wellington Through our Lens 10.30 – 12.30
Odlins Plaza, Wellington Waterfront (near Mac’s Bar)
Open to disabled people and our allies.
Our open conversation about living in Wellington as disabled people will be captured by live illustrators.
Wellington City Councillors and the council Accessibility Advisory Group will be present.

Saturday 3 December
An evening of music and entertainment
Where: City Gallery, Civic Square
When: 7pm Saturday 3 December 2016
International Day of Disabled People
$10 per person RSVP Door Sales available.

Other events taking place:
Arts Access Aotearoa Auction
Thursday 1 December
CQ Hotel Cuba St Wellington
Doors open 5.45 Auction begins 6.00
$20 tickets from Arts Access Aotearoa.

Capital Support Morning Tea
A meet and greet with sharing of information
Friday 2 December 2016 10:00 – 11:00am
Conference Room in the Education Centre, Kenepuru Hospital
Parking: There are disabled car parks near the front entrance. If you don’t have a disability, please park in the public park on the left at the top of Hospital Drive
RSVP: For catering purposes or if you need support, please contact Nadine Martin: Email: capital support, (one word) at  CC DHB.org.nz; or Phone: 04 two three oh six four oh four. Space is limited, so please RSVP.

Check the Disability Pride Facebook page for updates.

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2016 LitCrawl, a literary injection straight to the heart of the city. Saturday 12 November.

We had already decided on the name for our Crip the Lit session at LitCrawl Wellington before all this happened. Several of us had been concerned for some time that “real” disabled voices were not being heard enough in the print world, that writing about disability in New Zealand is still too dominated by non-disabled people. There are good blogs by disabled people but little quality writing between books or stories about overcoming disability, and serious academic work.

Teaming up with other disabled writers seemed a sensible thing to do. When the opportunity at LitCrawl came up I was ready to gather some writers and seize it

Why did we decide on this title, knowing it would be provocative and contentious? Provocation is no bad thing if it promotes good discussion. And of course it has. But 140 characters on Twitter don’t give much space to explain why we chose it so I’m elaborating here.

The term Crip is not used lightly. It’s not an everyday word, and must be used sparingly and in particular contexts. I was influenced by the #Cripthevote US election campaign, and by the way #CripLit rolls off the tongue and is already used by other disabled writers in a similar way.

The word “crippled” of which “crip” is a shortened form, is an old word, a word that is seen as dated and stigmatising. Disabled people have more recently reclaimed it in the same way other marginalised groups have reclaimed words that have been used in hurtful ways. Claiming back such words is empowering and neutralises the hurt. It turns a former slur into a badge of pride. But of course it’s not always appropriate to use it, and its use is careful and conscious.

“Cripple” as an actual label or insult is so archaic, from a bygone era and mostly not used even by those who know no better terms. Other negative terms about disability are still used, and are therefore less safe to play with than “crip.” Most disability activists and disabled people won’t use words like “handicapped” or “retarded” either as reclaimed terms or even ironically.

But “Crip” can be ironic, edgy and humorous. It shows confidence in a community people often expect to be intensely self-absorbed, lacking a sense of humour, creating “misery memoirs” or needing “inspiration porn” to feel good about ourselves. Using the term “Crip” in this context shows we don’t take ourselves too seriously. We want to challenge the reader to think differently, to take a new look, to challenge ideas of “safety” around disability.

Using terms such as “crip” often indicates a sense of pride in who you are, an involvement in disability activism and culture, a sense of community. We know the social model, and we recognise that the term is not self-hatred or lack of knowledge but rather shows understanding of disability history.

“Crip” has been used by some disabled people for several decades. It has become inclusive over time, and can represent people with all kinds of impairments, while still enabling people to maintain their own important identity/ies.

Despite that, we know that not everyone will feel comfortable with the term “crip,” which is fair enough. For some it’s too risky, or the hurt is still too raw. We respect that and hope that people can move beyond that word to the content of our LitCrawl session. We’ll be speaking in our own voices, telling our own stories, and we won’t be appropriating the voices of others.

And of course respectful discussion and debate is always welcome. We don’t have to agree on everything.

Four disabled writers will read our work on November 12 Crip the Lit at the CQ Hotel, 7.15 – 8.00. Trish Harris has just published her terrific memoir, The Walking Stick Tree, Mary O’Hagan’s insightful memoir and analysis of the mental health system, Madness Made Me was published a couple of years ago. Sally Champion and I will read from our current work and work in progress. Come and join us!

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Call me cynical, but a lot of disability motivational speaking is designed to make both disabled and non-disabled people think that if that poor crip, blindie or whoever can do it then I should be able to too. This is often coupled with a slightly voyeuristic view of people’s individual impairments – non-disabled curiosity about the detail of disabled lives that becomes legitimised by listening to motivational or inspirational speaking.

Of course becoming a motivational speaker is not that simple. Some impairments, or degrees of impairment are more acceptable than others on the speaking circuit. You have to look good, and sound reasonable especially if you are female. A degree of life success is also necessary. Your ability to make the most of your experience depends on a lot of factors, whether you are disabled or not. If you had a good start in life, with comfortable beginnings, supportive family and good educational opportunities, whether you were born with or acquired your impairment, the personal insight you have, whether you are an optimist or a pessimist, and of course whether you are male or female – I’m almost willing to put money on the gender imbalance. Most of this is not acknowledged. The ways people overcome adversity are complex, and not always easily transferable. Hype won’t cut it in most cases.

I’ve done a fair bit of public speaking and I thought briefly of becoming a professional public speaker at one time, before reality very quickly asserted itself. Somehow I couldn’t take it, or myself seriously enough, and strong and serious self-belief in your role as a professional speaker and your message is a fundamental requirement. I’m way too old anyway.

Disabled people do, of course spend time in the public eye, as actors, singers or musicians, dancers, comedians and so on, They are practising their skills and talents, telling their own stories in their craft. I respect wise and skilled communicators such as the late Stella Young who spoke truth to power honestly in a way that any audience could relate to and understand. She nailed issues such as inspiration porn in a way that puts purveyors of it to shame.  She was creating meaningful change, rather than motivating people to do something like selling banal products, or exert themselves to greater individualistic heights on their life journey.

People who impress me are those who do great work or other things that are of value to communities or the world generally, or who make the most of what they have and maintain a balanced perspective. Such people don’t have to talk up their achievements. They speak for themselves.

It’s time professional speakers groups and bureaux modernised their view of disability.

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