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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Disabled people in New Zealand were optimistic about the CRPD and the leading role New Zealand had taken in its development. The first NZ Disability Strategy was still fresh, the Sign Language Act was passed that year and the last of the big institutions was closing. The Disabled Persons Employment Promotion Act, which allowed sheltered workshops to avoid employment rights for many disabled workers, was repealed the following year. As a result of all of the above, New Zealand won the prestigious Franklin Delano Roosevelt International Disability Award for 2007.

Ten years later how has implementation of the CRPD fared?

The New Zealand government ratified the CRPD in 2008, and is showing willing to ratify the optional protocol. The government is positive about ratifying the Marrakesh Treaty, but needs encouragement. We have a disability rights human rights commissioner, disabled people’s organisations are working more closely with government, and the sixteen-year-old Disability Strategy is finally being reviewed.

But I have a sense of unease and disillusion in the disability community. As always money is tight. The Convention Coalition set up as part of the monitoring mechanism for the CRPD seems to have lost its funding and there aren’t seats around the government table for groups of disabled people who don’t have their own national representative organisations. The same old issues are raising their heads with depressing lack of progress among the now 24% of New Zealanders who are disabled.

• There are problems with exclusion and the funding of “special” education.
• Maori and Pacific disabled people are behind others in most social indicators
• There is a small group of vulnerable disabled people who aren’t criminals detained without redress for significant lengths of time.
• Disabled women in New Zealand still have no strong national voice of our own.
• Access to the built environment, NZS4121 and enforcing legislation are desperately in need of review, reform and modernising.
• There is no sign of legislative reform and change in mental health provisions and the Adoption Act, contentious at the time of the CRPD ratification.
• Assisted decision making does not seem to be on the public agenda
• Employment remains an intractable issue
• There is no indication that the troubling inequity between health and ACC services will change
• Disability data formerly collected with the census will be collected less regularly and there is unease about disability data and how it will be gathered.
• Safety and fear of violence and abuse are common, and related community services are not dealing well with disabled people.
• Government and other public web sites are not as accessible as they should be.
• Disabled people’s representative organisations are stretched and under-resourced and need time and space to develop their own agendas.
• Disabled people worry about negative public attitudes and behaviour and media coverage and portrayal.
• The consultations on the draft disability strategy raised concern about the lack of a strategic approach and an individual rather than  a systemic and structural focus. Disabled people are also suspicious about accountability and impatient with the extended time frame for implementing the new strategy.
• Act MP David Seymour recently referred to the 24% of disabled New Zealanders as “a worthy cause.”

There is still much to be done.

Years ago I used to say, half-jokingly, that I would be old and grey before there is any real substantial change. I am now old and grey, and, sadly, my facetious prediction seems to have come true.

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First Announcement:
Conference of the Women’s Studies Association (NZ)/Pae Akoranga Wahine
University of Auckland, Friday 2/Saturday 3 September 2016
Conference theme:
New Landscapes in Feminism and Women’s Studies
Programme themes include:

• new feminisms
• all our futures: women and ageing.
• feminist theory meets intersectionality
• women in diverse communities
• climate, place, environment
• new technologies
• violence against women: new thinking on enduring challenges
• solving conundrums around inequalities
• memorialising women
Expect an exciting line-up of guest speakers
A call for papers will be circulated shortly
Submission deadlines:
• peer-reviewed stream : April 15th 2016
• non peer-reviewed papers : June 10th 2016

I have posted several times on the inclusion, or rather exclusion of disabled women in relation to feminist discourse. The questions I have raised are still important. This conference looks as if there may be some opportunities for disabled women to contribute. But the old questions still remain. Are we academic enough? Will we feel welcome?

We are, of course, part of the ageing population, but will other ageing women be able to accept disability feminist analysis. Will we still be at the bottom of the intersectional list as usual? Is our brand of diversity an OK part of feminism yet? Will the new-tech theme recognise us and our contributions? We know about inequality but will the conference address it in practice, and we watch our herstory vanish or be rewritten by others each day? Will there be a disabled woman speaking in that “exciting lineup”?

Can we contribute? Do we want to? Are our voices important and strong enough or are we, along with everyone else, content for the status quo to continue? Of course our part of the landscape isn’t really new at all. We’ve been there all the time, in plain sight.

Probably enough questions for one post I think.

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Usually the parent is offered public sympathy. If they stand trial, they are treated with leniency. Even if convicted, usually of a lesser crime than murder, they rarely serve jail time.

The victims are relegated to the margins of the crime, even blamed for their own murder and soon forgotten. Each instance reinforces the narrative that disability is so terrible that parents are driven by it to kill their own children to lessen their suffering.

But these disabled people have died at the hands of someone they should have been able to trust the most, someone who ought to have protected them from harm, someone with a recognised responsibility in law to do just that.

On Tuesday, March 1st, the disability community will gather in several countries to remember disabled victims of filicide–disabled people murdered by their family members or caregivers. They are joining together to mourn the lives lost to domestic violence and murder, to bring the deaths into the public consciousness as a human rights issue.

In the same way as for everyone else, domestic violence towards disabled people is not OK. Disabled people killed by their families are entitled to justice  and equal protection under the law. Formal reporting of disability domestic violence deaths along with other domestic violence deaths by the Family Violence Death Review Committee, and inclusion of disabled people in domestic violence services and campaigns are all necessary immediately.

Our project, The New Zealand Disability Clothesline,  is compiling a list of the deaths we know about that are in the public arena with the names of murdered disabled people.

The New Zealand and Australian clothesline projects, campaigning projects against violence and abuse towards disabled people, are joining the vigil to mourn the lives of murdered disabled people this year on March 1 with an online vigil. You can join in our Disability Killings vigil-Trans Tasman Day of Mourning on Facebook.

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My first wish is that the great team of audio describers we trained earlier this year will have lots of work next year, for theatre, civic events such as parades, operas and other musical events, and in museums galleries, and even sports events where TV may not provide an adequate commentary or any coverage at all.

My second wish is that that the New Zealand Government decides to ratify the Marrakesh Treaty to increase the amount of copyright material available in alternative formats to print-disabled New Zealanders.

My third wish, and dreams are free, is that there is a concentrated effort to include disabled women and children in family violence services, as well as action to protect disabled women and men from abuse in disability support services of all kinds.

So there are three more wishes. A very happy Christmas and a safe and restful break to all my readers. May 2015 make all our disability wishes come true.

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Disabled women in New Zealand have made progress but there is still a long way to go. I will not outline yet again in detail the many inequalities faced by disabled women. For many disabled women the playing field is some distance away, never mind whether they can access it, or whether it is level or not.

In 2014 disabled women in New Zealand are still relatively invisible  and our interests, rights and perspectives are still neglected. We are still generally left off the agenda.

There is still systemic discrimination and a lack of understanding of the issues we face as disabled women, for example, mothering our own babies, the right to found a family, or for some women, sterilisation without their consent, a subject which has been in the news lately, relating to Article 17 of the CRPD  the integrity of the person. Women’s health and other important information and services are still quite inaccessible to us. A Google search for disabled women in New Zealand finds very little.

The current debate about social and economic inequality is exclusive of disability generally, never mind disabled women.

To continue the sporting analogy we are way behind the eight ball in international terms. That includes being behind some developing countries where disabled women are finding a strong voice.

Green MP Mojo Mathers’ message to disabled women at a celebration on International Women’s Day in Auckland earlier this year was reported as “Speak out when you see or experience injustice, identify potential partnerships to strengthen your voice and lobbying power and believe in your ability as women to make change happen.”  The message was to ”inspire change.” Celebrations are important, as is inspiration. But right now much more is needed. We need concerted and collected action.

Disabled women today

There is no longer a women’s caucus in DPA. That’s not because there is nothing left to do.  DPA has a policy on women. I know there is one because I and other disabled women helped to write it a long time ago.  There is now only one woman on the National Executive. What is the situation in other Disabled People’s Organisations?

Vision Impaired Empowering Women, VIEW was founded as a move for progress and a voice for blind and vision impaired women. It is now a localized support group.

We are forgetting our history. The inclusion of disabled women in the 120 years celebration of women’s suffrage Tirohia Mai exhibition, last year, was an attempt to reclaim it. But after the disabled women’s presentation alongside the exhibition the following discussion was more about disability history generally than about disabled women’s history or rights. It is clear that the energy of the eighties and early nineties has been dissipated.

Ironically this has happened at a time when we have more tools for progress at our disposal than we have ever had.

Tools for change

We have protection under the Human Rights Act and the Health and Disability Commission Act.

Objective 14 of the Disability strategy says “promote participation of disabled women in order to improve their quality of life.”

The CRPD takes the “twin track” approach” with Article 6 focusing directly on rights for disabled women and with disabled women’s issues threaded throughout. Our government is obliged to pay attention to disabled women’s rights.  And there are the other UN conventions such as CEDAW, the women’s convention and CROC, the children’s convention.

We have the Office for Disability Issues which has always been headed by women, and the Think Differently campaign.

There are also less formal, but potentially powerful tools available, in the form of the arts, the media and the Internet and the range of social media. Women With Disabilities Australia are a great example with their networks, web site, research, and publications. There are many excellent disabled women bloggers here and elsewhere. Social media are a very valuable tool for the growing International network of disabled women.

But in practice in New Zealand every other issue always seems to be more important and little work has been done on analysing what the twin track approach of the CRPD might mean today in a New Zealand context. There is no focus point for disabled women’s issues.

Sometimes in the disability world it is difficult to focus on the gender issue. Violence against women in a disability context tends to be lost in the compelling wider issue of general violence and abuse of disabled people, or issues for other, non-disabled women.

Disability is complex and nuanced, but we can no longer avoid the need to unpick these complex issues.

The intersection of disability and gender seems to create a barrier to the collective imagination. I am not sure why, since other groups of women are confronting intersections of gender and race for example, with some vigour.

In New Zealand we have not developed any widely accepted discourse on women and disability. We have not applied a gender analysis to disability or a disability analysis to gender, never mind other intersections.

Disabled women are leaders, but we are expected to lead on behalf of all disabled people, or to be content to see leadership as individual personal achievement.

Ageing disabled women

But action is becoming more urgent. As the population ages and women, disabled and non-disabled, live longer the numbers of disabled women are outstripping the numbers of disabled men. There will be more increasingly frail older disabled women who are living in poverty because of a lifetime of limited education and employment options.

The need for data

The response we often get is that there is no information about disabled women. That is not good enough. When the Disability Survey results from Statistics New Zealand come out next month we should expect and demand that all reports include gender analysis. We have to demand the same from everyone who collects any disability data, from MSD, the Ministry of Health, service providers and anyone else who collects and analyses population and other related information. Good information provides a strong foundation for us to build a level playing field.

Where next

Nothing will be handed to us. Without action from disabled women the playing field will remain the same as it has always been, distant and lumpy.  It needs leadership from us. We have to make our voices heard and work together across disability groups. Let’s not be seduced by individualistic approaches to progress. We may have to do things differently.

We can look for opportunities to add a disabled women’s perspective, as well as identifying and prioritising particular issues of importance to us. For example, there are opportunities for a gender perspective in the new government action plan for disability? There are also people who can be strategic allies and supporters, disabled and non-disabled. We have to find them and enlist their support.

Disabled women need an active and strategic voice to make change. How we develop that voice is the question. How do we develop a feminist and disability analysis for the twenty first century? I am interested to hear what disabled women think on the topic. This is a challenge to action.

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