Category Archives: Disability Issues

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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Filed under Disability Issues, Disability Rights, Inclusion, Media, Women

A personal perspective on arts access

I spend a lot of time advocating for various forms of arts access for disabled people. For once I thought I would share some of my own personal views of things I dislike most about museums, galleries and theatres, and a few things I like too. Don’t get me wrong, I love GLAM, (galleries, libraries, archives and museums,) theatre and music performances; I have done so all my life. But as a vision-impaired person, as distinct from blind, I often feel frustrated by the simple changes that could be made that would be helpful for many arts patrons, especially in an ageing community. As a lifelong arts patron I think I, and others like me, deserve better. Currently we often pay the same price as everyone else for a lesser experience.

Here are some of my pet peeves, and likes, starting from the beginning of the process, which can stop me in my tracks.

Advertising is often unreadable. Accessibility options are buried on web sites and difficult to find. Its fine to have aesthetic design but communication with an audience is paramount. Web sites and other advertising are often designed with art rather than access in mind. The two aren’t incompatible. The New Zealand Festival is making progress this year with an easily found accessibility section on the web site, (although an access link would be even better on the home page.) The Fringe, not so much. A shame as Fringe events may be within the budgets of more disabled people.

Booking is often difficult and expensive and plain inaccessible in many cases. I love Circa Theatre for their friendly and direct regular booking process. Chamber Music NZ  and New Zealand Opera also have user-friendly ticketing for audio described performances. The booking process should be easy, with accessible alternatives if necessary.

Lighting can be very poor in places where I most need it, such as reading my programme or catalogue, often difficult to read anyway, or on labels on exhibits. Carefully targeted lighting is possible. Transitions from light to dark, in particular are often inadequately managed and a bit scary.

Clutter and wayfinding. Museums often leave me exhausted with sensory overload and a struggle to find one thing to focus on, with so much sound and vision all together all at once. I realised how much I miss when I get a little taste of audio description. Poor lighting can contribute to this confusion.

Print materials are generally designed to look good rather than for readability. A downloadable more readable and accessible version would help. Labelling in galleries and museums could be easier to read, with larger, clearer print, or again downloadable so I can read them on my chosen device in comfort.

Libraries.  As a passionate reader, I am a regular user of our precious public libraries. Here there has been a real change. I use an online catalogue to find my chosen reading matter, but best of all, public librarians will, without question, help me find things on the shelves. In the past I found librarians rather intimidating and unhelpful. I don’t use the Blind Foundation library as I can read some print, often on my iPad. If the government ratifies the Marrakesh Treaty there should be more large print books available too.

Disability experience reflected in art, culture and heritage.  Last but not least we, disabled people, and our stories on our terms are largely absent. So-called “outsider” art is fashionable and collectable, but often not seen alongside “real” artists’ work in mainstream galleries in New Zealand yet. Theatre is slowly beginning to explore our stories, and disabled performing artists are appearing. But we still have a long way to go. Our heritage and history on our terms are not included in museums, and literary writing by disabled people is invisible. I have found few books on disability subjects I can relate to in our libraries by New Zealanders. Popular media stories are not the answer as they reflect unrealistic stereotypes. I want to see and hear and read “real” stories like mine.

What can we do? I am a practical person who tries to find solutions to the problems I encounter. In the research I have done over the years I know there is a lot of help available, and some wonderful stories to be told, and I’m not talking about sob stories, super crips or inspiration porn either, but human nuanced stories well presented. Our history, sometimes uncomfortable, unsafe and shameful, is largely untold in heritage institutions.

There are also opportunities missed. For example the wonderful Shapeshifter sculpture exhibition at the last NZ Festival would have been an audio describer’s dream as most exhibits in the outdoor exhibition were touchable. Perhaps this year? Cultural festivals such as the Chinese New Year, Cuba Dupa and Diwali, have possibility too. We have terrific trained audio describers in Wellington who are really keen to work.

Making change is not always easy. The disabled audience is diverse, and has to be cultivated and developed.  But talk to us, engage with us on social media and in person. Often the people factor is the most important. There are Arts Access Advocates who are knowledgeable and enthusiastic, often arts practitioners ourselves. The skilled and helpful people at Arts Access Aotearoa, have a wealth of resources available, some of which I helped create. These resources include a much wider range of arts access ideas, tools and advice than I have covered in this personal account. Most are free.

But don’t take the expertise of individual disabled people for granted. We are experts just like curators and other staff. That needs recognition in the same way.

We are an ageing population. Arts institutions need to retain us as audience. The arts are a critical part of my life. I desperately want to keep it that way.  We, disabled people are 24% of the population, and growing. Ignoring and excluding us as patrons and participants is not an option.

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

Disability as metaphor

Portrayal of disability in the arts and the media is a perennial and important issue if disabled people are to feel like equal and valued members of the community.  Portrayal issues are as important as access to the arts and media.

Last Thursday morning’s RNZ Summer Report featured a group of young people in Masterton talking about their production to help with confronting the loss of their peers through youth suicide.

Their play Smoke and mirrors presented scenarios with the themes of hope, purpose and belonging, powerful and universal concerns for young people.

In one scenario, a young man sees a shadow in the mirror, a blind man, a metaphor for his “blindness” to his own considerable potential, and his “tunnel vision” view of a meaningful future for himself.

The use of blindness and low vision in this way in such a sensitive situation and subject came as a shock. It was quickly followed by sadness to find myself encountering a new generation, albeit I hope unintentionally, perpetuating the myth of blindness and low vision as a wholly negative and life-limiting experience. It was hard to listen to that.

As a young vision-impaired person I was nearly defeated by those very fundamental questions of hope, purpose and belonging. If I was a young person today, struggling with them, how would such a play resonate with me? What kind of message does such a portrayal give to depressed blind and vision-impaired or other disabled young people?

We know very little about disabled youth and suicide in New Zealand. We have no information readily available, not uncommon in relation to disability. We do know that disabled people are amongst the poorest, and suicide rates are higher in the most deprived areas, and that men and Maori have higher suicide rates than women and non-Maori. (Ministry of Health.)

The disability section of the Lowdown youth and depression web site looks promising but delivers little. It is very wordy, links within the website occasionally fail to work, and no Sign Language or easy read information is offered. There is also no guidance about the accessibility or appropriateness of general services.

We have ample evidence of the devaluing of disabled lives every day in the media and in the experience of disabled people. It would be helpful to see more realistic portrayals of disabled people, and for them to be meaningfully included in campaigns such as suicide prevention and depression support.

And portrayal of disability and disabled people doesn’t have to be inspiration porn. But it must be respectful and it must be real.

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

Talking employment

On the International Day of Disabled People I ventured out unnaturally early for a discussion about disability and employment at my local Westpac Bank. I have to admit I heard little I hadn’t heard before, many times. Hearing the same, (perfectly valid) points again and again makes me a bit snippy. While many things have changed, humans and the systems we create have not.  My main takeaway points, along with subsequent reflections are:

It’s all about hearts and minds, but there are also persistent, deep-seated structural and systemic barriers, particularly in recruitment, that need more than good intentions and fine words to fix.

There is still wasteful and appallingly high unemployment among disabled people.

Those with tertiary qualifications still find it far more difficult to get work in comparison to their non-disabled peers.

Discrimination is widespread.

Universal design matters for customers and employees

Disabled people don’t need gatekeepers; we need collaboration, co-operation and equality. Disabled people are really good at problem solving. We do it every day.

More quality and comparative data is needed, as in most areas of disability.

This situation can change, but it will need more than feelgood effort. Since government departments and related public organisations are reluctant to lead the way, maybe corporates might like to have a go. The much-vaunted kiwi innovation skills could be usefully applied here.

But employers should no longer expect kudos and fulsome public praise for employing one disabled person and thinking they have done us a favour. It has to be the real deal. Kudos to employers who “get” that it is equally about disabled customers as it is about their disabled staff.

Enabling technology is available, compatible and useable, but it is useless if employers refuse to accept or won’t understand the value it adds, or implement it creatively, working with their disabled staff. It isn’t the whole solution either. Mostly it is about people.

Less talk, more action. Most disabled people want to contribute.

None of this is new.

Let’s turn the issue around. What is the cost of exclusion? Disabled people are an asset in the best sense. Talent should not be wasted. There is a cost to the economy – international research has found that exclusion costs between 3% and 6+% of GDP.

 

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Filed under Disability Issues, Disability Rights, Inclusion, Information Accessibility