Category Archives: Information Accessibility

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.

Leave a Comment

Filed under Disability Issues, Disability Rights, Inclusion, Information Accessibility, Media, The Arts, Women

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.

Leave a Comment

Filed under Disability Issues, Disability Rights, Inclusion, Information Accessibility, Media, The Arts, Web Accessibility

Digital for life

Like most problems disabled people have to face, the problem of digital inclusion, or exclusion, is complex. Those who have a stake in the remedy/ies often don’t grasp the full extent of the complexity. We are left with the problem being addressed in fragments, with little connection between the fragments, and little involvement from the people whose stakes are highest, the disabled technology users. Defining digital inclusion narrowly so it is “doable” may result in inadequate and untenable solutions. Those of us who have worked in this area for many years feel as if we are running on the spot making limited progress.

Last week I attended a meeting about digital inclusion. I experienced some of the above. This is not about criticising people who, like disabled people, have been struggling to gain traction on a wicked problem. But one size of solution won’t fit all, and the problems are compounded by intersectionalities among the groups most digitally excluded.

The barriers to digital inclusion for disabled people are:

Cost – This goes well beyond the cost of the Internet connection. While the cost of assistive tech is nothing like the enormous cost it used to be, it still costs money, even the accessible out-of-the-box tech, like iPhones and iPads. Everything costs something and many disabled people and their families are among the poorest in New Zealand. There is also a constant need to update and upgrade. People are expected to be more responsible for their own personal technology in education and work, never mind everyday life. Technology is an added cost to an already high cost of living with disability. For example, a person may be able to use a regular smart phone, but may need a top-of-the-line model to meet their particular access needs

Access – following on from financial cost is the policy assumption that access to the digital world relates solely to education and work – an outdated view that does not take into account how connected our world is, and how socially isolated many disabled people are. Digital inclusion relates to nearly every facet of 21st century life. Exclusion can create problems as fundamental as establishing identity in formal settings such as banks and government departments.

What’s the best assistive tech for me? – Older disabled people may not have used much digital technology. Families with young disabled children are still struggling to get to grips with their changed lives. Many disabled people are poorly educated and may have limited access to information about technology choices. As in many other areas of disabled people’s lives useful information is hard to find, particularly if your service provider is not focused on digital access, and there are many disabled people with more than one impairment, while others receive little or no disability support service

How do I get the best out of the technology? – Skilled help with assistive technology is hard to find if you are not part of an impairment group with access to specific help. People don’t always know how or who to ask for help.

Do I have the right skills? – Some groups of disabled people may miss out on acquiring good skills using regular technology such as web and other applications, Word, Excel etc. Their education may have been poor, and as adults they have had no access to training using assistive technology in conjunction with regular software and applications.

Compatibility – A person may have the appropriate assistive technology, but connection with the technology in education or workplace settings can pose problems of compatibility. There may be a reluctance to modify either on the part of the employer, or even the IT service provider. I have had personal experience of the latter in a very senior role, and have talked to many other disabled people who have faced similar difficulties, preventing them from doing their job properly, limiting their opportunities and career prospects.

Mainstream research excludes us – Disabled people are often excluded from research projects, either because of an inaccessible methodology and process, or because the researchers don’t know how to contact them or communicate with them.  They may be seen as a “different” or “atypical” group, or just too hard. But at 24% of the population they are far from insignificant, even though they are diverse.

Little consultation – Disabled people of all ages need to be closely involved in deciding what technology will work for them, and how to use it. They also need to be included in consulting on and setting “big picture” policy and other decisions made about assistive technology. Involving a few “geeks” and disabled specialists is not enough. While I have seen meetings and forums about transport, employment, equal education, I have never seen an open access digital forum specifically for disabled people.

Technologists, policy-makers and researchers don’t know enough and don’t share or co-ordinate their work – It’s not enough to know about the technologies and their applications. Digital inclusion, and the knowledge to create it requires a more holistic approach, and knowledge sharing. The disability world is complex and intersects with other disadvantaged groups, for example, disabled Maori, disabled parents.

The battle for online accessibility, where the technology can be more important than the end-user experience, is a case in point. While this is possibly true for all user experience, for disabled people it is more critical as there is less choice for information access. The technology should never come before the people.

This is a human rights issue, and the underpinnings for this are little understood by those working in the field. Articles 9 and 21 of the UN Convention on the rights of disabled people are particularly relevant. Accessibility is Outcome 5 of the revised Disability Strategy and has a focus on Universal Design. What this means in practice requires thorough exploration alongside disabled people.

Digital inclusion is now huge. We are expected every day to interact and transact online with banks, insurance, businesses and retailers of all kinds, a variety of government departments, local government, health service providers, travel and entertainment bookings, education and work. There are eftpos terminals, ATMs, self-check-in kiosks, news, entertainment of various kinds and social media to navigate, and the technologies all change and update frequently. New opportunities arise in areas such as the arts. This is all likely to increase. Disabled people will continue to be seriously disadvantaged in many areas of life if digital inclusion is not tackled seriously.

Leave a Comment

Filed under Accessible Engagement, Disability Issues, Disability Rights, Inclusion, Information Accessibility, Web Accessibility

The more things change the more they stay the same.

Ten years ago this August the United Nations completed the negotiations for the Convention on the Rights of Persons with Disabilities, (CRPD.) at the UN in New York. It was a huge relief that the wheeling and dealing was over, and we’d got much of what we wanted. Of course the real work was just beginning. But we all set off to party on that hot August night.

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.

Leave a Comment

Filed under Disability Rights, Inclusion, Information Accessibility, Web Accessibility, Women