Category Archives: Disability Issues

Taking charge of our own stories

A response to Me Before You

The past week has brought highs and lows in the disability world. On a high we saw the election of New Zealander Robert Martin to the United Nations Convention on the Rights of Disabled People CRPD committee, the first person with a learning disability to be elected to a UN committee ever.

Demonstrators outside the Embassy Theatre Wellington. The banner they are holding reads "Demand better stories #Survivethemovie #GetLaid #NotYourInspirationPorn. A male and female figure are silhouetted together in black. Photo by Zoë Deans

Demonstrators outside the Embassy Theatre Wellington. The banner they are holding reads “Demand better stories #Survivethemovie #GetLaid #NotYourInspirationPorn. A male and female figure are silhouetted together in black.
Photo by Zoë Deans

Things then took a turn downward with the opening of Me Before You, panned as a disability snuff movie by disabled people around the world. (The equally flimsy book of the same name was published in 2012.) Disabled people here joined the international outrage, protesting vigorously at cinemas around New Zealand.

Continuing the sickening downward trend, we heard about Ashley Peacock, and the ombudsman’s description of the autistic and learning-disabled man’s continued incarceration in “cruel, inhumane and degrading” conditions.

Three stories, two are real, one is anything but. Me Before You represents an ableist view of the disabled life. The real stories represent two extremes of disabled lives. Robert’s story is one of possibility, of a resilient and loving human spirit. The other real story is about an unresponsive and uncaring system reducing vulnerable people to a status of worthlessness.

Out of sight out of mind

The “out of sight out of mind” mentality is still alive and well in New Zealand. A while ago I visited the old Porirua Asylum museum. It was a sobering experience. I bought the published history of the hospital and related services and looked for the patients’ voices. There were none. In great sadness I mourned the nameless and forgotten people who were “put away”, unwanted objects in institutions which were supposed to care for them, often buried in unmarked graves and written out of history.

We have heard their voices only occasionally, through the wonderful early novels of Janet Frame, despite the revisionism that seeks to deny or at least minimise her searing experience of being labelled and treated as mentally ill. Mary O’Hagan’s recent book Madness Made Me is an excellent and constructive first-hand account of more modern mental health services, and Robert’s story, Becoming a Person is a powerful no-holds-barred life experience of abuse and systemic discrimination, but one that seizes with both hands the essential life-affirming humanity we all share, ultimately hopeful. Stephanie de Montalk’s exploration of pain in How Does it Hurt? would probably never have been published, despite its quality, if she were not already an established and highly respected author.

Such significant and excellent accounts are rare. Even books of academic interest are hard to come by in New Zealand and are prohibitively expensive in hard copy and as e-books. With the exception of Attitude TV, and one or two independent film makers and committed individuals elsewhere, the popular media and, importantly, our significant cultural institutions, are controlled and staffed by non-disabled people, and the stories they tell reflect that perspective

Growing up in a disability vacuum

Most disabled people in New Zealand still grow up seeing little realistic reflection of our own lives in the culture around us. I certainly didn’t. While my growing up was a while ago now, I don’t see much change. There have been one or two worthy attempts to introduce disabled characters into children’s books, with limited success. Even David Hill’s quality See Ya Simon is still from a non-disabled perspective, and the disabled character has to die as an essential part of the plot.

Mainstreaming disabled children and young people in the education system has had the unintended result of loss of community and cultural ties for some groups of disabled students.

Invisible stories

Story, in whatever form, is an important means of helping growing people find their places in the world. Growing up essentially without stories in one important aspect of your being is deprivation of an essential part of your own and the related human experience. It leads to a sense of disconnection, and of always being an outsider, whose concerns are marginal to those of everyone else.

Access is not enough

The absence of disabled voices telling our own stories on our own terms is surely the reason for the survival of the “fate worse than death” fearful view of disability. This is why we demonstrated for better, more real stories. The experience of disability is so much richer than the common bleak death-filled view. Disability is a prevalent, rich and universal thread in the human story. It is a thread to be explored, even celebrated. Our cultural institutions, including publishers, libraries, museums, galleries, theatres and others in the arts establishment must understand that access, while absolutely critical and necessary is not enough. We have to tell our own stories in our own voices, in our own ways.

A dedicated “cultural space”

Making space for us is key. We want a slice of the action and the resources. We want our voices to be valued and heard. We don’t want a ghetto, the outsider arts. We want to use our stories to effect change, to shine a light on dark places and forgotten corners. We want to tell our stories so we too belong. We will no longer stand for being incidental plot devices in the drama of others. Movies like Me Before You would have smaller and more critical audiences if our voices were part of a nuanced cultural mix.

A dedicated disability “cultural space” is necessary. A “cultural space” doesn’t necessarily have to be physical and, at its best it would be a broad, inclusive and innovative space for disabled people to explore disability culture/s while forging strong connection and challenging the broader cultural context. Such a space might be a physical or virtual online space, or both. The critical element would be disability-owned and led. This space and place could be the incubator for disability-led practice in a range of media to develop storytelling, sharing the stories disabled people know are waiting to be told.

We want our work to be taken seriously, to be no more or less therapeutic than any other arts practitioner’s. We want to shine light on disability history and disabled lives so that situations like Ashley’s are unthinkable because service providers and the public know better, and Robert’s human rights passion and work won’t be thwarted.

Other minority groups have cultural spaces. Places of celebration and pride and identity. What would a disability “cultural space” be like? If we could design them, where would they be? What would they be filled with?

Me before you is an abject example of the need for changing cultural values, for real stories, providing a quality balance to the pity parties and inspiration porn. It’s time for us, nearly a quarter of the population, to take charge of our own stories.

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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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