Category Archives: The Arts

Writing disability

Because this year is my Year of Serious Writing I have been reflecting on writing about disability. You could say I have been writing about disability for many years, and I have, but writing from a deeply personal perspective and exploring events, memory and distance in place and time is very different from journalism, reports, blogs on information access and related themes, even speaking notes.

As if writing about memory and the past are not difficult enough, writing about a life with disability is more so. Drawing the meanings and lessons complicates my task even more.

I must explore and create my truth through a language that shifts and flows, an unstable country, a language that seems in some ways not up to the task and in others so nuanced and complicated that I may drown.

For example, when I think about the everyday language we use in the disability world I encounter problems. The words “disability” and “impairment” themselves are deeply contested, never mind such phrases as “the lived experience of disability.” The language used is also littered with medical and sociological jargon. I had to explain what DNR meant recently on Facebook. ( It means do not resuscitate, instructions sometimes found on a medical file.) My fault for using jargon.

The “social model” of disability which is a strong thread in disability identity is not well understood, either within or beyond the disability world. Sociology and psychology, even religion describe disability as object rather than subject. Medicine defines body as machine. None of them take real account of meaning for the heart, soul and spirit.

Internalised stigma and ableism, by me and the reader also complicates the writing process. We have all internalised social oppression that declares disability to be undignified, the “fate worse than death” scenario most disabled people steadfastly deny in the face of prevalent community incomprehension. We often feel like second class citizens in our own country. That has interesting implications for a writer.

The disability human rights and equality on which I have focused so much of my life’s work and commitment are also contested subjects. They are couched in frustratingly legal terminology. Terms such as “reasonable accommodation,” (the degree to which an employer, education provider, retailer, transport and other services and so on must meet the disability requirements of their customers,) have a degree of currency. But that term in particular is legalistic, grudging and ungenerous, lacking a warm and wholehearted welcome, calling into question another contested word, “inclusion”.

I also have to negotiate the “poor me,” “aint it awful” pity scenario and its equally unacceptable opposite, “disability porn,”  two extremes so popular in the media and a trap for the unwary writer.

For me it has become increasingly necessary to travel beyond the clinical, the medical, the legal, the sociological. I have to banish stigma and negative belief to excavate the more dangerous depths of meaning.

It’s a scary enterprise for a private person. I may uncover sadness, rage, rejection, even shame in those depths. But memory can discover surprise and delight as well as pain. There is also joy, humour, friends found and strength drawn from a strong sense of community.

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Audio description at Te Papa

The delights of audio description have come relatively late in life for me. Theatre, an important part of my life since I was a small child has acquired added depth, richness and meaning with audio description.  Although I have listened to opera, apart from a long-ago visit to Covent Garden during my OE and one or two films, I have only recently attended and been enchanted by audio described live performances.

Of course each of these has sound, often very familiar sound, in the case of Shakespeare or Puccini for example. But the world of fine art is very different. Vision is usually the sole means of access. I have spent many hours in galleries around the world, but the opportunity for an audio described tour of some of Nga Toi, our national collection on show at Te Papa, with a group of blind and vision impaired people could not be missed. I have some useful vision so I looked forward to new possibilities. The visit revealed interesting detail I never suspected existed. But I was also surprised by sadness. How many great art works I have looked at, yet not really seen?

It’s a bit like books. I used to think that I found some books boring because I failed to appreciate their literary merit, frustrating to an English literature graduate, a book lover and compulsive reader. That was until I discovered eBooks. Holding a large and heavy classic with small poor quality print close to my eyes is physically tiring and requires a high level of effort, which is a challenge to concentration, but on an electronic reader it would suddenly became absorbing. The problem was the medium, not my mind.

When visiting galleries a similar problem arises. I can quickly become sensorily overloaded, frustrated and bored, because I can’t see enough detail to connect at the meaningful and satisfying depth I want. At Te Papa the well- audio described works revealed intriguing hidden detail and depth that hooked and stimulated my imagination. Without audio description I must wade through tiring, confusing and seemingly meaningless visual clutter and I can’t read the guiding printed labels and information on gallery walls. Audio description means I can focus and connect at a deeper, more satisfying level and begin to have a similar experience to that of fully-sighted people.

A member of the group is guided to explore by touch a large piece of ornate gilded picture framing.

A member of the group is guided to explore by touch a large piece of ornate gilded picture framing.
Photo by Norm Heke © Te Papa

Touchable textured examples of paint on canvas enabled us to explore technique and materials. Learning about the art of framing by an encounter with an elaborate touchable example was fascinating and enlightening.

A 3D-printed copy of a fragile and precious object gave a real sense of its shape and texture, a successful experiment with a powerful new tool for access.

I have always loved textile and texture, so being invited to touch sensuous and colourful Cook Islands tivaevae Out of the Glory Box (quilts) was something my fingers have itched to do. Our group sat around the spread quilt, much as the makers would have. We shared intimately the colour, texture and embroidery of a deeply personal treasure stitched with love by a group of women. I could imagine them singing, laughing, gossiping and sharing knowledge as they worked. I discovered that these are not quilts in the usual sense, but appliqué, sensible in a warm climate.

While advance reading about the artist or craft person and their work is helpful, it is the audio description of the work that brings it to life. It should not simply describe the item; good audio description breathes life into the work, communicating story and context, historical or modern, which would be available to a sighted gallery patron. The description of a portrait as “looking out at us” immediately established a personal sense of connection, an authentic relationship between the artwork, the subject and the viewer.

Blind and vision-impaired people rely heavily on spoken word for communication so the quality and tone of voice is important to establish rapport in audio description. Description should be narration, like storytelling, not simply read aloud. Our audio describer was professional, warm and engaging, obviously enjoying the work she described. We felt welcome and that we were valued visitors to Te Papa.

As this art tour was something new we were treated to hospitality, and over cups of tea we gave positive and constructive responses to our tour. Of the many visits I have made to Te Papa this will be one of the most memorable.

The question of cost was raised. An audio described tour does require a lot of work. However you could say the same about education at Te Papa. The guidance we gave was that if the experience is similar or roughly the same as that enjoyed for free by others then there should be no cost.

Disabled people have for generations been systematically, if not intentionally, deprived of our cultural heritage, as well as our own unique disability stories and history. New and interesting means of inclusion and equality, many of them mainstream technology, such as iPads, smart phones and 3D printers, are now much more readily available. Sometimes though, it is simply a willingness to do things differently.

Because the disabled arts, heritage and culture audience has traditionally been under-served and undeveloped there is much ground to make up. As an audience we are among the poorest and face barriers of cost, ease of travel, various kinds of access and even feeling unwelcome, or stigmatised as a “special” audience rather than part of the richness of human diversity visiting and represented in cultural institutions.

Children and young disabled people need opportunities to develop skills and appreciation or they may miss out for the rest of their lives. Older people should be able to rediscover what they may think they have lost. Including everyone is critical. Access to our culture and heritage is a human right. Without it we are the poorer as individuals and as a nation.

Arts Access Aotearoa, which helped set up the tour, is a national treasure, but cultural and heritage institutions have to wholeheartedly join in. A start has been made and well done Te Papa for taking access seriously and for engaging with the community as well as searching out international best practice. Expect expectations to rise.

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Three disability Christmas wishes 2014

This time last year I wrote a Christmas blog with three wishes. Doing it again might mean I lack imagination. Last year’s wishes have certainly not been magically granted. But Christmas is the time of wishful thinking, so here is mine for another year.

My first wish is that the great team of audio describers we trained earlier this year will have lots of work next year, for theatre, civic events such as parades, operas and other musical events, and in museums galleries, and even sports events where TV may not provide an adequate commentary or any coverage at all.

My second wish is that that the New Zealand Government decides to ratify the Marrakesh Treaty to increase the amount of copyright material available in alternative formats to print-disabled New Zealanders.

My third wish, and dreams are free, is that there is a concentrated effort to include disabled women and children in family violence services, as well as action to protect disabled women and men from abuse in disability support services of all kinds.

So there are three more wishes. A very happy Christmas and a safe and restful break to all my readers. May 2015 make all our disability wishes come true.

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

The promise of technology

I’m hopelessly late in my post for the International Day of Disabled People, on December 3, and somewhat late to mark International Human Rights Day on December 10, and very late to review the National Disability Forum (NDF) conference in late November. But the theme for the International Day of Disabled People is important, and worth writing about, even if it is after the event. Sustainable development, the promise of technology has wide and powerful application in the digital age.

Late last month I was at the National Digital Forum Conference for the first time. I had been looking forward to it very much since joining the digital forum. I love the GLAM, (galleries, libraries and museum) sector. It represents exciting possibilities for innovative digital inclusion. While I found the conference stimulating and interesting, I also found it very frustrating and exclusive. The reality was a more risk-averse, resource-constrained approach generally associated with publicly funded bodies than the inclusive and innovative challenge the ridiculous optimist within me had hoped for.

The conference was well organised and we were asked for accessibility requirements at registration, always a good start. Temperature variation and a lack of natural light make Te Papa a trying and tiring venue, but that is often the nature of the beast. I liked the newbies meet and greet, but felt a bit unsure about the knowledge sharing session. It can be a bit lonely being the only disabled person with that interest at a “mainstream” conference, but I should be used to that.

The programme was varied, with the usual problem of choosing between streams. It was good to see Tom Smith there from the Blind Foundation demonstrating on the second day. A kindred spirit.

A powerful impression was that digital is visual, which was disappointing. In conversation I discovered that digital sound had been included at an earlier conference. There was a slight tone of “oh we have done that.” The same could be true of the absence of Sign Language content, which fits very well in the visual digital space. Yet the Deaf community is particularly innovative in harnessing digital technology for Sign Language communication. I didn’t see any captioning. Nor did I hear any mentioning of audio description in relation to iBeacons for example. Yet these are international growth areas with enormous potential. I heard no mention of alt attributes for interesting historic photographs, when discussing collecting and displaying them either.

The opening presentation by Brewster Kahle from the Open Library was informative and engaging. When he talked about universal access he meant it. He included access for blind and dyslexic people in a matter-of-fact context as a critical and integral part of business as usual for a modern library. I liked his approach. I will make a digital will, thanks to Rick Shera. I love the idea of crowd-sourced collections. Exploring publishing at a time of digital upheaval in the industry is fascinating and relevant.

Attending everything was impossible, so I may have inadvertently missed something important. The one event I had really looked forward to was the biggest disappointment. Perhaps I was tired at the end of two full on days, and I certainly was coming down with a cold. People sitting around me were obviously captivated by the MONA, (Museum of Old and New Art) from Tasmania presentation, but I did sense some unease in the wider audience. Was it a giant ego trip, a monumental folly or a truly ground-breaking innovative endeavour taking GLAMs to a new level? I still don’t know since the presentation was inaccessible.

Perhaps others in the audience were reflecting on the practicality of an example of a well-funded privately owned museum with no public accountability or obligation for the largely publicly owned and funded New Zealand GLAM institutions.

I don’t expect be able to read or follow in detail all slides and visual presentations, but many other speakers used their visual presentations as an aid rather than depending on them entirely.

I would have walked out if I could. Being conservative or older is not the reason for my discontent. I am not conservative. (I wasn’t bothered by the allusion to “porn”.) I am open to and interested in the new. That was why I was there. MONA is reputed to be successful. But success on whose terms? Not mine. I will think twice about including it on my schedule when I visit Tasmania.

I heard statements like, “Being smarter about digitisation”, “Ensuring sustainable access to Community content”,  “Manage risk, encourage innovation”, “failure, success and challenge”, “taking risk”, “design thinking”, ”collaboration”, “user experience”, “Get on with it”. But the promise of technology, the challenge, and the opportunity it presents to the Digital Forum members is to include nearly a quarter of the population in access in their work. The challenge and opportunity is also to rectify our almost complete invisibility in the content in mainstream art and heritage. Is inclusion of everyone by fulfilling the promise of technology a risk too far for the New Zealand GLAM community? I hope not.

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