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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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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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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Colour contrast counts! A cautionary tale

Information accessibility challenges can pop up in unexpected places.

Recently I was talking to someone involved with an amateur dramatic society. Billboards were designed for the latest production. The billboards, complete with fancy font for branding, were displayed in and around the small country town where my friend lives. On the computer screen they looked great. But he discovered to his annoyance that when driving past them at the open road speed they were unreadable. Some retrofitting was needed. A steady handed volunteer was recruited to outline the lettering in black to increase visibility.

Before: digital image

Before: digital image

After: modified billboard

After: modified billboard

My friend reflected ruefully on the problem. He decided that in future he would stick to plainer fonts, never mind the branding. He also decided to do what he perhaps ought to have done at the beginning of the process. He tested the contrast on the electronic version of the billboards with a colour contrast analyser. It failed.

Lessons learned.

The principles of universal design and accessibility are indeed universal. Everyone, not just disabled people, will benefit from their application.

Think about what your audience needs before worrying about the branding.

Things that look great on your computer screen might not look good anywhere else.

Colour contrast really does count!

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