Author Archives: Robyn

by | November 24, 2016 · 1:15 pm

Disability Pride Week

Disabled people have been increasingly self-assertive this year, through Me Before You protests, a vigil following Japan’s disability mass killing, increasing arts activities and participation, LitCrawl, “outsider” art exhibition, book publishing etc, great success at the Paralympics, a learning-disabled New Zealander chosen for the UNCRPD committee and the Disability Strategy reviewed at long last. There’s lots to celebrate in the week leading up to the International Day of Disabled People on December 3.

I’m no Pollyanna, and recognise there is still much to be done before Deaf and disabled people achieve true equality, but a pride celebration can promote change, strengthen community, and simply be some fun together.

A group of Wellingtonians have picked up the concept of Disability Pride, first formulated and celebrated by a group of public servants in the late eighties. We said “who we are is OK, What happens to us isn’t” – in short the social model of disability. It separates a person’s impairment from the effects of a disabling society. We celebrated with a festival of film, debate, theatre and other events. Add to that a human-rights-based approach to disabled lives and a celebration sounds good.

Disability Pride is about valuing our whole selves and our experience, however we frame our identities, taking our rightful and equal place in the world, and drawing strength from one another.

Taking stock of the journey, celebrating what we have gained and looking forward to future change is a good way to finish up a shaky and tumultuous year.

Disability Pride Week begins this Sunday at Te Papa, claiming our place.

Disability Pride Week, claiming our place is written in large white letters on a square pink/purple background.

Disability Pride Week events 2016

All events are in accessible venues with audio describers, hearing loop, NZSL Interpreters present.

Sunday 27 November 2016 2pm
Launch of Disability Pride Week
Te Papa Marae (Level 4 marae)
All welcome.

Thursday 1 December
Tape Art Mural 10am – 3pm
Created on the window of Asteron Centre by disabled artists using tape
(Opposite Wellington Railway Station)
The Mural can be viewed by anyone for 5 days.

Saturday 3 December
Wellington Through our Lens 10.30 – 12.30
Odlins Plaza, Wellington Waterfront (near Mac’s Bar)
Open to disabled people and our allies.
Our open conversation about living in Wellington as disabled people will be captured by live illustrators.
Wellington City Councillors and the council Accessibility Advisory Group will be present.

Saturday 3 December
An evening of music and entertainment
Where: City Gallery, Civic Square
When: 7pm Saturday 3 December 2016
International Day of Disabled People
$10 per person RSVP Door Sales available.

Other events taking place:
Arts Access Aotearoa Auction
Thursday 1 December
CQ Hotel Cuba St Wellington
Doors open 5.45 Auction begins 6.00
$20 tickets from Arts Access Aotearoa.

Capital Support Morning Tea
A meet and greet with sharing of information
Friday 2 December 2016 10:00 – 11:00am
Conference Room in the Education Centre, Kenepuru Hospital
Parking: There are disabled car parks near the front entrance. If you don’t have a disability, please park in the public park on the left at the top of Hospital Drive
RSVP: For catering purposes or if you need support, please contact Nadine Martin: Email: capital support, (one word) at  CC DHB.org.nz; or Phone: 04 two three oh six four oh four. Space is limited, so please RSVP.

Check the Disability Pride Facebook page for updates.

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

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 | October 10, 2016 · 8:27 pm

Misgivings about motivational speaking

I’ve always felt uncomfortable around motivational and inspirational speakers, especially if they’re disabled. It’s not that I don’t respect disabled people who have done well, or those who have great stories to tell; far from it. I have a healthy dose of cynicism and I am of a generation who was brought up to believe that blowing your own trumpet was not the thing to do. But I am also deeply suspicious of hype and those who claim they have all the answers. Their take is often at a very facile and superficial level.

Call me cynical, but a lot of disability motivational speaking is designed to make both disabled and non-disabled people think that if that poor crip, blindie or whoever can do it then I should be able to too. This is often coupled with a slightly voyeuristic view of people’s individual impairments – non-disabled curiosity about the detail of disabled lives that becomes legitimised by listening to motivational or inspirational speaking.

Of course becoming a motivational speaker is not that simple. Some impairments, or degrees of impairment are more acceptable than others on the speaking circuit. You have to look good, and sound reasonable especially if you are female. A degree of life success is also necessary. Your ability to make the most of your experience depends on a lot of factors, whether you are disabled or not. If you had a good start in life, with comfortable beginnings, supportive family and good educational opportunities, whether you were born with or acquired your impairment, the personal insight you have, whether you are an optimist or a pessimist, and of course whether you are male or female – I’m almost willing to put money on the gender imbalance. Most of this is not acknowledged. The ways people overcome adversity are complex, and not always easily transferable. Hype won’t cut it in most cases.

I’ve done a fair bit of public speaking and I thought briefly of becoming a professional public speaker at one time, before reality very quickly asserted itself. Somehow I couldn’t take it, or myself seriously enough, and strong and serious self-belief in your role as a professional speaker and your message is a fundamental requirement. I’m way too old anyway.

Disabled people do, of course spend time in the public eye, as actors, singers or musicians, dancers, comedians and so on, They are practising their skills and talents, telling their own stories in their craft. I respect wise and skilled communicators such as the late Stella Young who spoke truth to power honestly in a way that any audience could relate to and understand. She nailed issues such as inspiration porn in a way that puts purveyors of it to shame.  She was creating meaningful change, rather than motivating people to do something like selling banal products, or exert themselves to greater individualistic heights on their life journey.

People who impress me are those who do great work or other things that are of value to communities or the world generally, or who make the most of what they have and maintain a balanced perspective. Such people don’t have to talk up their achievements. They speak for themselves.

It’s time professional speakers groups and bureaux modernised their view of disability.

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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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