We are told the government supports the principles of Enabling Good Lives. But what does that mean in practice? This question was discussed during an online protest rally of disabled New Zealanders on Sunday 13 February. A spokesperson for the group, Disabled Leadership Now: Pam MacNeill, told the gathering that “while the government may say it supports the Kaupapa of Enabling Good Lives, this is just lip-service when it comes to leadership and staffing in the new ministry for disabled people. What happened to the principles of a person centred approach to building relationships with us, backing our right to self-determination to achieve ordinary life outcomes, and enhancing our mana by placing us in the mainstream of Public Service work about disablement? In appointing a nondisabled person to the role of Establishment Director for the ministry, the opportunity has been lost to enable disabled people to define our own agenda, and begin early to ensure easy access to our ministry by disabled Kiwis.”

Mrs MacNeill further called for vigilance on the part of those present lest the Public Service Commission appoint a substitute disabled person to the role of Chief Executive once the establishment phase of the ministry is completed in July this year. “We can not accept family as substitutes for disabled people staffing the ministry. Neither will we be mollified by appointments of people who may claim disabled status but with no personal lived experience of disability” Pam MacNeill said today.

By now you will all be well aware of the Disabled Leadership Now campaign based around the appalling decision made by MSD, to appoint a nondisabled person to the role of Establishment Director for the new Ministry for Disabled People, and the poor timing of the announcement by government.

It is important that existing disability advocacy groups understand that the kopapa of the campaign is complementary to wider advocacy underway in Aotearoa New Zealand. Disabled Leadership Now is a group of senior disability activists having our say on a matter which is critical to the future leadership and management of the disability sector by the people it exists to support. We appreciate that it is potentially difficult for contracted organisations in the disability sector to express similar views they may hold publically. So we are speaking out to make it clear to government that it is not okay to paternalistically decide that disabled people are not capable of choosing what we want, determining our own path, and controlling our own future. After all, isn’t that what Enabling Good Lives is all about?

We would love to see as many disabled people as possible joining us at 3.00pm on 13 February, to discuss the situation we now find ourselves in as disabled people seeking to gain choice and control of everything about us.

For too long, disabled people have not been equally represented in the positions of greatest influence over our own lives. We’re barely visible within the media, Parliament or Government. Neither are we well represented at senior management levels within the disability sector itself. The latest example of our marginalisation is that of the establishment of a Ministry for Disabled People. It seems that it is somehow deemed acceptable to put a nondisabled person at the helm. By mobilising a grassroots movement of disabled people in Aotearoa New Zealand, Disabled Leadership Now wants to pressure the Ministry of Social Development to take concrete steps to ensure disabled leadership is embedded throughout the ministry, particularly at leadership and management levels. Use the #DisabledLeadershipNow hashtag, to join us in growing the movement and raising public consciousness about the dearth of disabled leadership in prominent positions.

Disabled Leadership Now is campaigning to: embed disabled leadership in the DNA of the Ministry for Disabled People. To this end, we strongly urge the Ministry for Social Development to take immediate steps to ensure the appointment of disabled leaders to the ministry, including at Establishment Director, Chief Executive and senior management levels, now and into the future.

Many people do not realise that the late, great Desmond Tutu was a disability activist, along with his many other roles striving for the rights of people across all spectra of humanity. I was fortunate indeed to meet Arch Bishop Tutu on a number of occasions. First in Sydney, Australia, at the World Assembly of Disabled Peoples’ International, in December 1994, where he told the audience about his own impairment issues. At this time I also learned from him, about how many thousands and possibly millions of disabled people were exterminated, in the Nazi death camps.

I was struck by Arch Bishop Tutu’s calm but very passionate certainty about the human rights of all disabled people. He was also very clear that, in order for disabled people to become fully autonomous with respect to everything concerning us, we must be brave; fully prepared to rock the boat, and speak out for our own right to self-determination. I have a much treasured photo of my colleague and myself hugging Arch Bishop Tutu after his speech. He was a joy to speak with and I will always treasure his advice to disabled people around the world, that we should be prepared to do everything we can to take control of our places and spaces and speak up for ourselves.

As disabled New Zealanders begin the journey towards the establishment of our own place: a ministry for disabled people, let us not be afraid to demand control of this and everything about us! The journey may be difficult but remember, in insisting on taking control of our own destinies, we demonstrate the very point we seek to make, that we are more than capable of choosing for ourselves, making our own decisions and acting upon these.

RIP dear Arch Bishop Tutu. Your memory and inspiration will certainly live on.

Media Release Collective of Concerned Disability Leaders

Disability community gravely concerned by appointment of nondisabled person as interim head of new Ministry for Disabled People

The Ministry of Social Development and Ministry of Health announcement of a non-disabled person, in the form of career official Justine Cornwall, to head the establishment unit of the new Ministry for Disabled People has been roundly criticised by a grouping of disability leaders.

The Collective, a group of prominent disabled people, has come together to question the principle behind the appointment of Ms Cornwall however they stress this doesnt include her personally.

We wish to stress that our criticisms are squarely aimed at the principle that disabled people must lead and manage any organisation being established or existing in our name. The timing of this announcement is dubious, since it appears to have been deliberately designed to slip past disabled people who, like everyone else in the country, are dispirited and exhausted after another long Covid year. It is not as though there were no qualified disabled candidates applying for this position. Once again, disabled citizens, who make up a quarter of the population, get no real voice in our own business, other than the beneficently bestowed opportunity to provide representation at governance level, says group member and Hutt Valley-based disability advocate, Pam MacNeill.

While the group wished every success to Ms Cornwall in her new role, the attention of much of the disability community was now turning to ensuring that the permanent chief executive role, to be filled next year, would go to a suitably qualified disabled person.

Group member, disability advocate and podcaster Jonathan Mosen, speaking in a personal capacity, said that it was disappointing to find that the establishment unit director was not a disabled person who was known to the disability community.

This week, I hoped we would all be celebrating the success of a disabled leader who shared our values and was known to our community, and thus representing a true change in outlook for the delivery of disability policy. But while an experienced public servant and one who has disabled whanau/family members, Ms Cornwall is not a recognised member of the disability community and is a name not familiar to several disabled leaders I have spoken with. The public service has buried the details of the Establishment Director in a release issued on Christmas week when many in the sector have begun a break after an exhausting year. The release is dominated by a lot of talk about governance. That release would have looked very different had an authentic disabled voice been appointed.

Mr Mosen further added that disabled people are once again being marginalised in a way that no other minority would tolerate. If the Ministry of Womens Affairs were being established today, would women accept a man being appointed Establishment Director as long as women were on a governance group advising that man? What about Mori? What about Pacifica? A capable disabled leader could have been surrounded by public servants with a range of experience. But the experience you cant teach is the lived experience of disability.

The group believes that while the position is a fixed-term role, the Establishment Director will be critical in setting a culture of inclusion and accessibility that is different from the judgemental, patronising culture of the past. For the sake of authenticity, a leader who identifies as a member of the disability community should have been in that role. However, the hope is that the appointment of the permanent head of the ministry will lead to a disabled person heading it.

We, as a disability community, had better be vigilant because success is clearly not guaranteed, said Mr Mosen.

Ends

Contacts

Pam Macneill

0274 575 461

Email: pam7of9

Jonathan Mosen

021 466 736

Email: jonathan

Barry De Geest

Email: barry

Huhana Hickey

Email: HuhanaHickey

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.

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?” https://www.radionz.co.nz/national/programmes/insight/audio/2018634437/insight-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’.

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?

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.

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.