Euthanasia for convenience?

I totally agree with the comments made this morning by the Disability Commissioner on RNZ National, particularly that the attitudes of NZers are nowhere near where they need to be in order to have any kind of conversation about euthanasia. Right now it seems more like we’re looking for ways to get rid of people we don’t understand. Sound familiar? Many New Zealanders went to war to fight against this sort of bigotry during WW2.

With the greatest of respect to the member of Parliament who has introduced the End of life bill, I dispute what he sees as his right to decide for his son. Who says he, or any of us, are ‘suffering’.

My blindness is not curable but I’m not suffering from this. What I and the 24% of NZers who are disabled do suffer from though is the rank ignorance of others who think they know best. Personally, I refuse to figuratively ‘sit at the back of the bus’. My rights, and those of my disabled peers, are just as important as anyone elses. How dare anyone think they can get rid of us as inconvenient, costly useless drains on society.

Does my blindness, and now older age, make me useless? No doubt many might assume so. When I finish the PhD I started this year, to add to my other qualifications and years of work in mid-level management in both the State and NGO sectors, I’ll let you know.

How do we gain visibility?

On Sunday 4 March I was keen to hear the latest in the Insight documentary series from Radio NZ National. This was subtitled: “No Job, No Training, No Hope?”

The reporter hosting the documentary was Emile Donovan. emile.donovan

The website intro to the documentary noted: “The economy is going gangbusters and we’re in the middle of a construction boom, yet 80,000 young New Zealanders are not in work or training while immigrants are brought in to work as builders and bricklayers. How does a young person end up unemployed and uneducated, and are there processes in place to help those people get back on the ladder?”

This documentary focused on young people not in employment, education or training, otherwise known as NEETs.

Some interesting statistical data on this issue was presented. We were advised that while the unemployment rate in New Zealand currently stands at 4.5%, NEETs make up 11.5%, as at February 2018. Māori and Pacifica make up 40% of NEETs and 15% or 12,000 people are young women who are also caregivers. Each NEET costs the country just over 21,000 annually in benefits and lost productivity. This equates to 1.5 billion dollars each year.

Now since we know that, according to the last Census published by Statistics New Zealand in 2014, one in four New Zealanders is disabled by barriers to participation in the community and almost 70% of working age disabled people are not working and mostly not in education or training either, you could have been forgiven for expecting that disabled youth would feature strongly in this Insight programme. Especially when we also know that benefit payments and lost tax revenue from this group accounts for 1.1 Billion dollars (Workbridge 2016). But no, the only mention disabled people got in this programme was in the usual passive role of being cared for by young women labeled as care givers: “ … looking after an elderly or disabled relative …”

There have been several news items written and broadcast recently which discuss the needs of those who ‘care’ for us as disabled people. But wait, who mandated our relatives or organisations that profess to work for us to talk on our behalf? Are media representatives too frightened to discuss the issues that matter to us, for example about choice and power over our own autonomy, with us? And why can’t broadcasters and others simply ask us and stop treating us, in the words of the late June Opie, as though we are “museum specimens”. imagine how it might feel if your husband>/wife or some agency professing to be experts on you were the only people others spoke to about you and your life? What’s more, how appropriate would it be for Pākehā to rule the lives of Māori or men to decide everything for and about women … oh of course, that’s the way things used to be right? And, while such behavior was once the norm, it is, thank goodness, no longer considered acceptable.

The message most of us would send if we could capture the attention of the media for one minute is: we are not figures of tragedy, suffering from our afflictions. Neither are we here to provide inspiration to you. What we do suffer from is lack of consideration for our rights, being spoken about and not spoken to and the arrogance of those who continually assume (usually wrongly) that they have any clue who we are or what we need to remove the barriers to our full participation in all aspects of life. Disabled youth should have been included in this documentary and not pushed to the sidelines, to possibly be trotted out only when convenient to pluck at people’s heart-strings and get a ‘good story’.

Do disabled people still count?

While recently completing my census online, (as a screen reader user I felt I should do this early in case I met with any access issues), I discovered that disability issues have once again become ‘health issues’.

What seems like a very long time ago now, myself and others battled the government of the day, and its attendant bureaucracy, long and hard to have disability included in the Census of Population and Dwellings. It had at that time been 80 years since disabled people had been counted and it was high time that we were counted again. Long story short, disabled people as a group were finally reinstated in the 1996 census. It has been extremely helpful to the disability sector to be able to lobby for greater access to goods and services, and community participation in general, since we have been able to quote the percentage of disabled people in New Zealand. This currently stands at one in four or 25%.

As a member of the officials group tasked with coming up with suitable questions for the disability section of the 1996 census, I was very vocal about the need to ensure that we frame the questions around barriers to participation and not around health issues.

Imagine my shock then to find the latest census announcing: “The questions that follow are about difficulties you may have doing certain activities because of a health problem.” The questions under this category are framed in a negative, deficit model manner. For example:

“Do you have difficulty seeing, even if wearing glasses?

Do you have difficulty hearing, even if using a hearing aid?

Do you have difficulty walking or climbing steps?

Do you have difficulty remembering or concentrating?

Do you have difficulty washing all over or dressing?

Do you have difficulty communicating using your usual language, for example understanding or being understood by others?”

For each of these you are then given a choice between: “no difficulty”, “some difficulty”, “a lot of difficulty” and “cannot do at all”.

The degree to which a person can see, hear, move quickly, remember or communicate only provides information about a very small aspect of someone’s life – and not even in a particularly scientific manner. I have no vision, and while this may have had an initial health etiology as a baby, being blind doesn’t affect my health in the slightest. In and of itself, blindness actually has little baring on my life. Similarly many Deaf would be appalled at the thought of their identity being viewed as a negative ‘health’ issue. In the words of the late Stella Young, “We are more disabled by the society that we live in than by our bodies and our diagnoses.”

In the latest Office for Disability Issues (ODI) newsletter, Director Brian Coffey encourages disabled New Zealanders to “please make sure you are counted in the 2018 census, on Tuesday 6 March 2018.” He concludes by quoting a saying said to be gaining momentum: “If I’m not counted, I don’t count”.

So are we, people disabled by a society which erects barrier after barrier to our participation, truly counted in the latest census?

Are we handicapped by our media portrayal?

Sunday 3 December marked the United Nations International Day for Disabled Persons. We are also in the midst of New Zealand Disability Pride Week. These events not only celebrate the contribution disabled people make throughout the world but also highlight the barriers we face both in Aotearoa New Zealand and worldwide. The major barrier being the negative attitudes and erroneous assumptions and beliefs of others, including the media.

Chris Ford and I recently co-presented a paper at the Disability Matters Conference at Otago University in Dunedin. The presentation was an update to research we had previously produced for the Convention Coalition Monitoring Group in 2013, about how disabled people are portrayed by the media. The research found negative and stereotypical media reports abound: focusing on medical and/or charitable aspects of impairment, but failing to address rights-based issues about removing barriers to our participation. N.B. coverage of the conference by the mainstream media was negligible, just a couple of local interest stories were published.

So has anything changed since 2013? Well a little but there’s still some way to go. In the main, the unique views of disabled people continue to be unrepresented in critical discussions of national importance, in the mainstream media. The most noticeable change was in stories about disability produced in the digital and social media spaces. These tended to be more positive and focus on rights-based issues, for example the Blind Side series of 5 podcasts produced by Jonathan Mosen, in which he interviewed disability spokes people from the five major New Zealand political parties. This podcast series represents the only disability focused media discussion with relevant political party representatives in New Zealand, prior to the 2017 general election.

In updating our original research into the portrayal of disabled New Zealanders by the media we came to the conclusion that there is still some way to travel before we can say disabled New Zealanders are portrayed accurately: as people with impairments, disabled by the barriers erected by society.

Musings on language

I was listening to a good book at the weekend and came upon a passage where two of the characters were discussing the probable impending death of one of them from cancer. He noted that he didn’t want people saying he had ‘lost the battle’, as though this implied some moral failing on his part; as if dieing were a weakness. This lead me to wonder how often we all parrot what we hear, without considering the implications or messages we are sending?

Examples in the disability sector include the constant referral by media and other commentators to people not simply having, but ‘suffering’ a range of ‘afflictions’. People being ‘legally blind’, when there is no legislative imperative governing registration of vision impairment or blindness in New Zealand. How about the old chestnut of people being ‘confined’ to a wheelchair or to bed, or being ‘wheelchair bound’. Quite apart from the Victorian flavour this invokes, it is of course completely antithetical to the truth. Wheelchairs do not confine or bind, they provide freedom for those who use them.

Another example relates to disability-employment, which is as many of you know, very close to my heart and which I hope to begin PhD research on next year. The example is that of job descriptions, particularly though not exclusively in the State Sector. I continually come upon both vacancy listings and job descriptions which include a driver’s license as a ‘must have’ requirement. Sometimes this requirement is odd given the job it relates to, like the position of Office Administrator (who could use public transport on the very rare occasion s/he gets out of the office). Other times this requirement is darn right silly, like the position of call centre worker. Really? I thought this was a phone based role.

So why do people insist on driver’s licenses when advertising and/or putting together position descriptions for various roles? The answer is, because everyone else does it.

We all need to stop and think about what we say and what we do, and question why we say or do it. So next time you go to trot out some mindless platitude (yes we all do this), stop and think about whether it is really your view or just something you are repeating.

What ever happened to universal design

This week’s Hutt News headline caught my attention, after having also been pointed out to me by a reader. The headline reads: “Out with the old in with the new … five-story unit for disabled”.

The article noted that the twenty-eight, one bedroom units are to be built by Housing New Zealand (HNZ), on the site of an existing earthquake-prone HNZ building, in Epuni. The new building would include a lift and communal areas for mobility scooters and would be located near the hospital and shops.

While no one would dispute the urgent need for social housing by disabled people as well as non disabled people, the segregation implicit in erecting a building “for the disabled” is disturbing. Also of concern is the implication that it is quite okay to house this already marginalized group on an earthquake prone site.

I wonder if anyone from Housing New Zealand has ever heard of the concept of ‘Universal Design’? This addresses the need for access by creating designs usable by all people, whether or not they are disabled. This is accomplished by designing wider halls and doorways, barrier-free entrances and exits, elevated electrical points, lowered switches, adjustable wardrobe rods and shelves, adjustable counters and other features, as inherent elements in the building. Universal design makes the home usable by all family members, and also recognizes that human abilities change over the life span.

Housing New Zealand only needs to contact the Barrier Free Trust, a long-standing organisation dedicated to universal design, to get all the help they need to ensure accessibility for all.

Web Accessibility

At the weekend I applied to register DRNZ as a company. I had sighted help fortunately for me, as the website was only partially accessible using a screen reader, even once I learned it’s particular foibles. This lead me to think about the Government Web Standards on accessibility, which were established by the State Services Commission way back when …

After my weekend experience and several others I have had lately with government and other websites, I can’t help but wonder: has no one thought through the practical implications of continuous software updates on accessibility? A department might audit accessibility when a website refresh occurs, but how often do they review the site for accessibility? This really needs to be done whenever there is a major website update or rebuild and whenever new versions of both mainstream and adaptive software and various computing platforms are launched. So this means they need to be constantly reviewed.

How can this issue be resolved? Certainly not by guessing about what needs to happen. But by ensuring disabled people are part of the design and maintenance of websites and advice is sought from appropriate disabled people with the knowledge, skills and experience to support accessibility. Average disabled users also need to be consulted, since this is most of us!

Pam MacNeill

Accessible surveys – have your say

Here is some news of a couple of worthwhile surveys relevant to disability responsiveness:

It’s not too late to take the simple and accessible DRNZ survey of just nine questions. We want to find out what people think about the need for greater levels of disability responsiveness in all sectors of Aotearoa New Zealand. We’re still collecting responses and welcome your input at

We will be collating all responses to the survey in a couple of weeks and will feature the findings in the December issue of Newsworthy.

DRNZ recently facilitated a series of ten forums for Workbridge throughout New Zealand. The purpose of the forums was to engage with disabled people about the barriers they face to employment and how Workbridge can help reduce these. Workbridge also asked the community how they want services delivered in future.

A survey which features the questions workshopped at the forums, is available at:

The survey is open until 16 December so why not log on and check it out. We promise it will only take 5 minutes of your time, unless of course you wish to provide additional feedback.