Category Archives: Disability Issues

Disableism, the book famine and the Marrakesh Treaty

It is only too evident to disabled people on a daily basis that disableism is all-pervasive. Sometimes it is intentional. Mostly it isn’t. It ranges from “The little acts of degradation to which other people subject us, those little reminders to us that we need to know our place in the world,” such as the comment in the supermarket, the unwelcome question from a complete stranger, to the systemic acts of discrimination. An example: the NZ government can take a child for adoption from a disabled mother without her consent, under Section 8 of the Adoption Act, simply because she is disabled.

These actions, large and small, but no less damaging to the individual disabled person, flow from a deep-seated, ancient cultural view that disability of almost any kind makes you a lesser being than others. There are also degrees within the disability world of this “lesserness.”

Disableism on a grand scale

Disableism also exists on a grand and international scale. Access to information, in particular books and print material, affects many disabled people. The publishing industry and public libraries have traditionally taken little account of accessibility until recently, seeing access for print-disabled people as a charitable endeavour, partly because of technical limitations. Now technology has advanced to the point where the demand for access cannot be ignored, although copyright has been a thorny issue for the various interests involved.

April 23 was International Copyright Day, and the links between this and Blogging against Disableism Day, May 1 seemed fortunately coincidental. There are now powerful tools available to us to address at least some of the systemic disableism. They flow from the acceptance that human rights, codified for disabled people in the CRPD, can drive change.

The book famine

Literacy, and access to printed material is something taken for granted and expected in western countries. Yet in countries such as New Zealand only 10 percent of print material is available to blind and vision impaired and other print-disabled people. In developing countries it can be as little as one percent. Millions of people worldwide, including children and students are being denied access to books and other printed material.

In NZ and similar countries there are delays in accessing important education materials such as textbooks. Many general book titles are not available in accessible formats at all.

The Marrakesh Treaty

The World Blind Union and others have worked hard to combat the “book famine.” The result is The Marrakesh Treaty, which will directly address the problem. Firstly, it will enable “authorised entities,” such as blind people’s organisations and libraries, to more easily reproduce works into accessible formats (braille, DAISY, audio, large print, e-books, etc.), for non-profit distribution. Secondly, the Treaty will permit authorised entities to share accessible books and other printed materials across borders with other authorised entities.

Currently the international system does not allow for cross-border sharing, leading to needless and expensive duplication of books by organisations with limited resources.

When the Marrakesh Treaty comes into force, cross-border sharing will be legal, which will help avoid duplication of reproduction efforts in different countries. The Treaty will also enable countries with large collections of accessible books to share them with blind and print-disabled people in countries with fewer resources. This will help print-disabled people in developing countries.

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

Ending the disadvantage

Those of us who are blind and print-disabled want to be able to go to a bookshop or library to pick up and read the new bestseller like everyone else. Blind and partially sighted children want to be able to go to school and to become literate just as much as their sighted peers do.

I am angry and distressed when I find smart disabled people with their life choices and opportunities hampered by their lack of literacy. Sometimes it is about teaching and opportunity, but often it is about access to age-appropriate print materials. Education is the key to life opportunity, such as fulfilling work, continuing learning and community participation as citizens. But it is also important to be able to enjoy the simple pleasure of reading to expand our horizons and enable us to explore other worlds beyond our own experience.

Ratifying the Treaty

The Marrakesh Treaty will begin to tackle the book famine, once it is ratified and implemented. The Treaty and its benefits will only apply to countries that have ratified it, and it will only come into force once it has been ratified by 20 countries. Currently, the Treaty has been ratified by 15 countries, making it possible for the treaty to come into force in 2016.

It is important that those of us who will benefit from the Marrakesh Treaty pressure our governments to ratify it, and end this disableism, the lifelong disadvantage of lack of access to the wider world of learning and the simple pleasure of reading enjoyed by everyone else.

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International women’s day 2016 – Women’s Studies conference

Here’s my contribution to International Women’s Day. From the Women’s Studies Association

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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Mourning our disabled dead

Disabled people have for many years watched a pattern emerging in disability deaths. A parent kills their disabled child. (The “child” may be an adult.) These murders are portrayed in the media and elsewhere as a justifiable and an almost inevitable result of the “burden” of having a disabled person in the family. These deaths are frequently framed euphemistically as “mercy killing”.

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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A personal perspective on arts access

I spend a lot of time advocating for various forms of arts access for disabled people. For once I thought I would share some of my own personal views of things I dislike most about museums, galleries and theatres, and a few things I like too. Don’t get me wrong, I love GLAM, (galleries, libraries, archives and museums,) theatre and music performances; I have done so all my life. But as a vision-impaired person, as distinct from blind, I often feel frustrated by the simple changes that could be made that would be helpful for many arts patrons, especially in an ageing community. As a lifelong arts patron I think I, and others like me, deserve better. Currently we often pay the same price as everyone else for a lesser experience.

Here are some of my pet peeves, and likes, starting from the beginning of the process, which can stop me in my tracks.

Advertising is often unreadable. Accessibility options are buried on web sites and difficult to find. Its fine to have aesthetic design but communication with an audience is paramount. Web sites and other advertising are often designed with art rather than access in mind. The two aren’t incompatible. The New Zealand Festival is making progress this year with an easily found accessibility section on the web site, (although an access link would be even better on the home page.) The Fringe, not so much. A shame as Fringe events may be within the budgets of more disabled people.

Booking is often difficult and expensive and plain inaccessible in many cases. I love Circa Theatre for their friendly and direct regular booking process. Chamber Music NZ  and New Zealand Opera also have user-friendly ticketing for audio described performances. The booking process should be easy, with accessible alternatives if necessary.

Lighting can be very poor in places where I most need it, such as reading my programme or catalogue, often difficult to read anyway, or on labels on exhibits. Carefully targeted lighting is possible. Transitions from light to dark, in particular are often inadequately managed and a bit scary.

Clutter and wayfinding. Museums often leave me exhausted with sensory overload and a struggle to find one thing to focus on, with so much sound and vision all together all at once. I realised how much I miss when I get a little taste of audio description. Poor lighting can contribute to this confusion.

Print materials are generally designed to look good rather than for readability. A downloadable more readable and accessible version would help. Labelling in galleries and museums could be easier to read, with larger, clearer print, or again downloadable so I can read them on my chosen device in comfort.

Libraries.  As a passionate reader, I am a regular user of our precious public libraries. Here there has been a real change. I use an online catalogue to find my chosen reading matter, but best of all, public librarians will, without question, help me find things on the shelves. In the past I found librarians rather intimidating and unhelpful. I don’t use the Blind Foundation library as I can read some print, often on my iPad. If the government ratifies the Marrakesh Treaty there should be more large print books available too.

Disability experience reflected in art, culture and heritage.  Last but not least we, disabled people, and our stories on our terms are largely absent. So-called “outsider” art is fashionable and collectable, but often not seen alongside “real” artists’ work in mainstream galleries in New Zealand yet. Theatre is slowly beginning to explore our stories, and disabled performing artists are appearing. But we still have a long way to go. Our heritage and history on our terms are not included in museums, and literary writing by disabled people is invisible. I have found few books on disability subjects I can relate to in our libraries by New Zealanders. Popular media stories are not the answer as they reflect unrealistic stereotypes. I want to see and hear and read “real” stories like mine.

What can we do? I am a practical person who tries to find solutions to the problems I encounter. In the research I have done over the years I know there is a lot of help available, and some wonderful stories to be told, and I’m not talking about sob stories, super crips or inspiration porn either, but human nuanced stories well presented. Our history, sometimes uncomfortable, unsafe and shameful, is largely untold in heritage institutions.

There are also opportunities missed. For example the wonderful Shapeshifter sculpture exhibition at the last NZ Festival would have been an audio describer’s dream as most exhibits in the outdoor exhibition were touchable. Perhaps this year? Cultural festivals such as the Chinese New Year, Cuba Dupa and Diwali, have possibility too. We have terrific trained audio describers in Wellington who are really keen to work.

Making change is not always easy. The disabled audience is diverse, and has to be cultivated and developed.  But talk to us, engage with us on social media and in person. Often the people factor is the most important. There are Arts Access Advocates who are knowledgeable and enthusiastic, often arts practitioners ourselves. The skilled and helpful people at Arts Access Aotearoa, have a wealth of resources available, some of which I helped create. These resources include a much wider range of arts access ideas, tools and advice than I have covered in this personal account. Most are free.

But don’t take the expertise of individual disabled people for granted. We are experts just like curators and other staff. That needs recognition in the same way.

We are an ageing population. Arts institutions need to retain us as audience. The arts are a critical part of my life. I desperately want to keep it that way.  We, disabled people are 24% of the population, and growing. Ignoring and excluding us as patrons and participants is not an option.

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