Raising the bar on “awareness.”

This week, 5 -11 October, is Mental Health Awareness Week, (MHAW).  Surely we are all reasonably aware of the state of our mental well-being? It is, after all, difficult to avoid our state of mind, even if we don’t all have the insight we might have about it. But perhaps not. Don’t get me wrong, I think our individual mental health, and that of the nation are of critical importance, and I have no problems with this particular campaign or other campaigns that set out to advance particular issues or conditions. It is just that word awareness, with its lack of solid intention that bothers me.

For many years I have observed countless awareness campaigns and training programmes focused on disability generally, or on particular impairment types. With the disability population reaching twenty four percent it’s time to seize the high ground and do something different, be more ambitious. If people aren’t aware now they should be, or we haven’t been doing it right.

“Awareness” is a passive, anodyne and boring word. So you are aware, so what? It’s what you are going to do with that awareness that really counts. I’m much more concerned with taking action and making positive social change. Constructive actions with progress markers are elements awareness campaigns and training seem to miss.

It’s nearly thirty years since a group of disabled people working in the public service launched the concept of disability pride into the world with some dissension. Not everyone thought then that taking pride in a disability identity was A Good Thing – the essential liberating meaning of the social model of disability has been slow to catch on here. But at least let us explore some proactive possibilities.

Fifteen years into the twenty first century is time to stop bleating about awareness and show some muscle. Pride in identity could be one way, or creatively claiming disability rights and our place to stand in the sunshine might be another. I would love to see people younger than me with the energy and chutzpah to confront and challenge the tired old awareness trope wherever they find it.

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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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Euthanasia: A disability perspective

Recent events in Canada have revived the issue of assisted suicide, or euthanasia, in New Zealand. Disabled people in Canada and Australia have expressed dismay about a situation they see as a threat to the lives of disabled people.

The Alberta Association for Community living chief executive Bruce Uditsky said “The Court’s decision is the most permissive approach to assisted suicide in the world. Rather than require people to have a terminal illness, people with disabilities simply have to express their life is not worth living.” And there’s the rub.

We know that many disabled people in New Zealand experience violence and abuse without access to redress. Many of us are chronically depressed because of the accumulated effects of the hardship and everyday discrimination we live with. People who murder their disabled family members often receive lesser sentences in court than other murderers.

I have heard disabled people recount the experience of random strangers saying to them “If I were like you/in a wheelchair/blind etc I would want to die.”  That may be so, the idea of disability as “a fate worse than death” smoulders in the collective imagination, stoked by popular media portrayals of “tragic” disabled lives. Certainly disabled people are among the poorest and most disadvantaged in our society. But many of us don’t see our lives as tragic suffering.  In confronting all of the above we generally manage to remain philosophical and resilient.

Disabled people do feel that our lives are considered by society as being of lesser value than those of non-disabled people. Many of us are already faced with coercion in daily life “choices” such as where and with whom to live, access to our communities, education, work etc. Some have had their choices constrained to the point where they have discovered Do Not Resuscitate directives on their medical files, placed there without their consent.

It is not surprising then, that disabled people are nervous about assisted suicide. We might not feel so insecure if we lived in a more equal society, where disability was a fact of life rather than a fate worse than death.

Nor would we feel this way if we are accorded equal respect in the debate. Intimidation into silence is not helpful. Others cannot speak for us. Sadly they frequently do.

Some disabled people support assisted suicide. They believe that it is their individual right to exercise an ultimate act of control over their own bodies and lives, a reasonable point of view. But some other disabled people are not in a position to exercise such control. There is also room for mistakes, misuse and manipulation. Additionally, assisted suicide represents the worrying re-medicalisation of disability, which we have fought long and hard to change.

I suspect most of us would prefer to talk about a good life rather than a good death. There is unease that state assisted death would encourage disabled people to end their lives, especially those who have high and complex, (expensive) medical needs.

It is worth noting that New Zealand has ratified the UN Convention on the rights of Disabled People, (CRPD,) where Article ten establishes the right to life on an equal basis with others. There is no mention of a right to be assisted to die. The Convention is concerned with respect and dignity, however a dignified death does not have to equate with assisted suicide.

Baroness Campbell, herself a person who lives with significant, sometimes life-threatening impairment, said of the Assisted Dying Bill recently before the House of Lords in the UK.  “It is a Bill for the strong at the expense of the weak.

I think that she is right and her words apply to the whole debate.



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