Category Archives: Disability Rights

by | November 1, 2016 · 7:20 pm

Crip the Lit at LitCrawl

This year particular attention has been given to the way disability is portrayed in various media. The Me Before You international debacle set off a chain of protests as the movie screened around the world. The film and the book that spawned it hit a nerve in the disability community. It was followed by the tragic mass murder of disabled people at Sagamihara, Japan in July, which deepened the rage and disgust with the way disabled people are seen and portrayed on screen and in other media. Most days we see examples of good and more frequently bad portrayals from around the world in social media.

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

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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Filed under Disability Issues, Disability Rights, Inclusion, Media, The Arts

by | August 31, 2016 · 7:17 pm

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.

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

by | June 22, 2016 · 6:30 pm

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

by | April 29, 2016 · 9:03 pm

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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