Access by Various artists

9

The Driverless Road Ahead

by Kumara Republic

For the past decade and a bit, I've been working as a computer technician and sales rep. During that time, I've seen the desktop and laptop computer go from being the main method people get on the Internet, to an also-ran in the face of the tablet and smartphone boom. And when your tablet or smartphone goes bung, it's often cheaper to replace them than fix them.

The result is that the computer technician is in danger of joining the TV repairer as a “rust belt” occupation. Low and middle-skilled workers who've been, or are at risk of being, dislocated out of work by external factors keep getting told, “just go back to university” or “learn to code from the Web” or “network with the right people”.

I hate to break it to all the I'm-alright-Jack motivational snake oil peddlers out there, but it's nowhere near that simple. When there's a 10-tonne lead-weight of social immobility on top of you and it's too heavy to lift off by yourself, it needs an external force to lift it unless you're a comic book superhero. And anyone saying, “if you believe in yourself enough, you can lift it off you!”, is asking for rude words to be thrown at them.

First off, here's a backgrounder. For a fuller explanation, see my blog post from 2012.

Early on in my life, my folks knew I was behaving a bit differently from others, family members included. And yet it took them many years to realise what kind of different – an ASD/SAD/ADHD kind of different, quite possibly PDDNOS.

I was an aliterate (as opposed to illiterate) youth who struggled with secondary school English class – even though English is my first language – and was frequently nagged and harangued by my mother to read more books. Ironically, I get a kick out of writing social commentary like this, despite no formal journalism training – and the Internet has a likely role to play in this – and even maintained a blog once.

Being the pushy Asian parent stereotypes of the time, they sent me to private school in the belief that the smaller classes would make a difference and get me a passport to an “Ivy League” career. Such as accountancy, one of the squarest of occupations, which my father has a background in and attempted to push me into in the hope of continuing some kind of “family business”. Upon being made a Chartered Accountants fellow earlier in this decade, he stated in his address that, “I regret that none of my kids have followed me into accounting. I guess IT and medicine will have to do.”

What I got instead from private school was no end of torment from Boris Johnson and Don Nicolson wannabes who punched down for the fun of it. And when I fell behind under the dual weights of arrogant young toffs and the immense pressure to succeed, my folks doubled down and basically had me “tutored to death” and sent to taekwondo lessons whether I liked it or not, not realising that such measures were attacking the symptoms.

When I asked why I was being sent to taekwondo, they told me it was “to increase your confidence”, when it had no effect of the sort. Safe to say that if I was Japanese and living in Japan, I would have joined the ranks of the “hikikomori”, a great many of whom are on the autistic spectrum or variants of it. Even “basement dwellers” in the West are social animals in comparison.

I was briefly one of those “basement dwellers” for a good few months after acutely bombing out of university finals, not once, but twice, and being forced to move back in with the folks after the money ran dry. All attempts to cross-credit to a tertiary institution closer to home proved unsuccessful, because of the proprietary nature of the course – a major in information science – and also because the HOD didn't want to “dumb it down”.

It was at that point I made the difficult decision to cut my losses.  Three different tertiary institutions later, I came to realise the hard way that the whole notion of “university or bust” is a recipe for a sunk-cost fallacy and a lifetime of debt for many, especially those not suited to self-directed learning.

Even the one polytechnic that I went to was little different from the theory-heavy material I struggled with at university. Some people speak of being the first in their family to graduate from university; I can only speak of being the first in the family to drop out.

And when the job market basically treats bachelor's degrees as the new secondary school, there's a problem. It seems to be largely an issue in the Anglosphere where tertiary education has seemingly devolved from a public good to a perishable good. Where people once attended university to expand their minds, people now attend university because they feel it's the only way to citizenship of the middle class – “diploma mills” are a visible symptom of this. If there's one thing I do miss about university, it's the campus life and the chance to meet many people from all over the world. And a strong academia is an important part of opposing populist anti-intellectualism.

Now to the here-and-now.

As it stands, much of my lifetime earnings have been subsidised by MSD, and I'm also partly relying on the charity of my folks who are topping up my living costs out of their pension, which, admittedly, not everyone is fortunate enough to have.

This is partly in recognition of taking a sizeable pay cut in order to qualify for a Community Services Card, which gets me greatly subsidised surgery for a rare and pre-existing dental condition – I went through something of a Trumpcare-grade experience until I was able to qualify for the card. And it's partly a gesture of apology for repeatedly misdiagnosing my neuro-deviance, trying to force the square peg that is yours truly into a round hole with a bigger hammer, and not recognising early on that I'm on some form of the spectrum and the associated difficulties with the job market that come with it.

In fairness, Dr Asperger's research wasn't translated into English until the mid-late 1980s, and it's taken some years to gain acceptance since. I may not be a “hikikomori”, but I'm still something of a “herbivore man”or a “freeter” in Japanese terminology.

I'm far from alone in facing the prospect of being on the wrong side of industrial singularity. Truck drivers are a case study in this – researchers estimate that self-driving trucks could slowly but surely render human drivers surplus to requirements. The Economist asks what becomes of the middle-aged, mid-career truckie who was bored stiff in the classroom and couldn't wait to quit school. I'm kind of like the desk equivalent of that mid-career truckie.

Even Bill Gates of Microsoft fame has called for a “robot tax” to dampen the impact of technological unemployment. The Internet is a double-edged sword – it's broken down the barriers to accessing information and media globally, and for a “digital native” like me it's heavily shaped the person I am today.

On the other hand, Instagram's employees number less than 1% of those who worked for Kodak at its peak, while the business is worth far more. And not everyone can be a gadget genius like Elon Musk or a code genius like Mark Zuckerberg or Bill Gates, who came from family affluence to begin with and for whom money was no obstacle to going to university.

For every Zuckerburg and Gates who chose to quit university to focus on building their future tech empires, there are countless university dropouts who struggle and eventually wind up in a dead-end rut. Fear of failure has long been a cultural trait in East Asian societies, whereas in the West it's more a practical thing. For all the stories of successful entrepreneurs failing once and getting back up, failure is often so expensive for the less financially secure, that it really is Sydney or the bush for them.

Repurposing workers who've been dislocated by technology and other external factors – or more to the point, rent-seekers who own most of the technology – becomes increasingly important. When you have your hands full keeping food on the table, a roof over your head, and the lights and heaters on, the time and money needed to upskill yourself is often an unaffordable luxury.

And for all the hype surrounding MOOCs and nano-degrees – with completion rates well under 10% – the above Economist article on truck drivers points out that most people who actually manage to complete a MOOC already have a university degree or otherwise can easily afford to take time off to study:

The costs of reskilling, in terms of time and money, are easiest to bear for people who have savings, can control their working hours or work for companies that are committed to upgrading their workforce. And motivation is an issue: the tremendous learning opportunities offered by the internet simply do not appeal to everyone.

For those unsuited to the self-directed approach of university or Web learning, myself included, an immersive and practical vocational approach like the one found in an apprenticeship is overwhelmingly best. The rapidly changing nature of an industry like ICT makes it far more suitable to trades training than university study.

The single biggest stumbling block to a “Great Repurposing” that can retrain people for new industries is that it's not going to come cheap, and under current Anglo-Saxon model economic thinking, it's very easy to shout, “how much will this big government tax-and-spend nonsense cost hard-working taxpayers?” A better question to ask would be, “what's the cost of doing nothing about the coming 4th Industrial Revolution?”

And such a cost has become all too obvious in just the last few years.

The Anglo-Saxon model status quo set in place by Thatcher and Reagan in the 1980s has been turned on its head by the Great Recession. The subsequent taxpayer bailouts of Wall St and the City of London have exposed the unresponsiveness and hypocrisy of the austerity narrative, and stoked perceptions that the hyperclasses can get away with daylight robbery.

Some forewarned that the pitchforks would come out, but they weren't taken seriously. Mainstream social democrat parties that have clung to a late 1990s Blairite/Tory-lite approach have found themselves ideologically hamstrung and severely punished at the polls – known as “Pasokification” – in favour of leaders like Jeremy Corbyn and parties like SYRIZA and Podemos to their left flank. Crank that up to 11, and you have Venezuela under Chavez and Maduro.

On the other side of the fence, illiberal and inward-looking jingoism is threatening to fill the void left by the collapsing New Right consensus, as seen in Donald Trump's America; the Brexit vote as cheered on by faux-maverick Nigel Farage; and Marine “trust me, the NF is longer anti-Semitic” Le Pen in France. Taken to its logical extreme, you're looking at France in 1789, Russia in 1917 and the Weimar Republic in 1933, all of which directly led to the deaths of millions. Here in NZ, we're unlikely to face war or civil unrest, but we still face the possibility of Winston and Shane holding the balance of power and replaying 1996 all over again.

The rise of Trump has been directly tied by some commentators to America's massive under-investment in vocational training and the associated social immobility, and the flipping of most of the Rust Belt states to the GOP for the first time in years.

The OECD ranks America and Britain, with NZ not much higher, near the bottom of the heap for active labour market adjustment policies. Even the likes of the IMF and World Economic Forum are starting to notice the connection between perpetual austerity and the rise of illiberal populism.

Leaving aside the ugly ultra-nationalism, Trump's pledge to strong-arm American industry to bring jobs back to America has so far rung hollow, with major companies like Carrier and Ford continuing to offshore to Mexico and China respectively. Trump also wants to prop up Big Coal at a time when it's being undercut by natural gas and renewable energy, the latter of which Trump seems to think of as for poncy treehuggers. By contrast, coal mining and oil drilling have an inherent red-blooded machismo that happens to be a big part of Trump's base.

A number of commentators argue that middle-class cultural anxiety, rather than working-class economic anxiety won it for Trump. One rationale is that Trump-style demagogues still made visible gains in Western Europe, despite having strong social safety nets and highly progressive taxation. Yet at the same time, Euro-Trumpists have largely failed to actually make it into government. It's possible that Trump was a wake up call to Europeans about what a Trumpist demagogue would actually look like in power.

Another rationale is that Rust Belt voters who supported Obama in 2008 and 2012 stayed home or went to third parties like the US Greens and Libertarians, rather than Trump. Dig a bit deeper, and union-busting and voter suppression also played a big role. All the same, economic anxiety and cultural anxiety can be both interlinked, as well as confused with each other. The last thing any of us want is for the both of them to merge into something even worse, as Europe in the 1930s goes to show.

So what lies on the driverless road ahead? Thankfully, all is not lost.

The social enterprise Specialisterne is in the process of setting up shop in New Zealand. It has its origins in Denmark with Thorkil Sonne, an ICT pro whose son was diagnosed autistic and wanted to harness the unique traits of workers on the spectrum who were written off by the job market. Studies done in Britain and America have estimated that unemployment rates among those with ASD are as high as 80% – far higher than those with visible disabilities such as deafness or paraplegia.

Factors that inherently discriminate against autistic jobseekers include poor sense of eye contact, being “too honest”, and many other issues involving verbal communication. Specialisterne recognises this state of affairs, and assesses and trains them for companies needing the right people, particularly in the tech sector.

Many of the new jobs being created these days are non-routine jobs that are not easy for machines to do (such as management) and/or require greater social interaction than the ones they replace (such as care-giving). It puts at an inherent disadvantage the autistic, the social phobic and other “socially challenged” people who would have once worked routine industrial jobs that didn't require much social contact.

From a quick glimpse, the Future of Work manifesto takes considerably after the Scandinavian and German models of training and jobs, and sounds like a viable alternative to the Anglo-Saxon I'm-alright-Jack orthodoxy.

So how is it relevant to me personally? It includes proposals to retrain workers who've been put out of work by advancing technology, who would otherwise be in no financial shape to retool themselves. How very Scandinavian, and for good reason. Aside from the bread-and-butter aspects such as boosting R&D and STEM, closing the digital divide, and returning MSD to an actual jobs agency, the following aspects are relevant to me personally:

  • E14 – Establish skill-shortage levies to fund training in industries
  • E17 – Support hop-on, hop off training
  • E18 – Create gateways back into education for older New Zealanders
  • S1 – Every worker who loses their job as a result of technological change provided retraining and support
  • S14 – Advocate for better work practices for mature workers and engage them through mentoring programmes
  • S18 – Develop an employment plan for people with disabilities
  • T4 – Create greater focus on digital upskilling and creativity
  • T5 – Invest in creators through digital apprenticeships, creative thinking clubs, and garage grants

It's very easy to dismiss the Future of Work as just another talkfest at best, or an excuse to rehash the “Polish shipyard” bogey at worst. But it's an issue that goes way beyond partisan politics. And the longer the status quo persists, the more likely the Good Ship New Zealand may encounter a Brexitrump iceberg, barring a miracle and those in charge of the status quo step out of their leafy comfort zones and put the greater public good first.

I strongly believe programmes like the Future of Work are seawalls that can guard civil society against the tidal waves of ultra-populism, and more importantly, it's the politics of hope – a blueprint for a new social democratic pathway that echoes Michael Joseph Savage's “applied Christianity” and FDR's New Deal.

As with their physical counterparts, let's build bridges to upskilling and gainful employment, not walls.

8

A short disability history of Aotearoa New Zealand

by Hilary Stace

In 1840 the Treaty of Waitangi was signed between the British Crown and the indigenous Māori population of Aotearoa New Zealand. Its principles promised partnership, participation and protection. However, colonialism was largely negative for Māori and two centuries later they are disproportionately affected by socio-economic deprivation and disability.

Nineteenth-century New Zealand was settled mainly by people from Britain and Europe who were prepared to endure a long and risky sea trip for a better life. But disability was unwelcome and immigration acts banned ‘cripples, idiots, lunatics, infirm, blind, deaf and dumb’. Nevertheless, by the turn of the century large ‘asylums’ mixed several categories of ‘undesirables’. Physically disabled people were more likely to be housed in the ‘chronics wards’ of regular hospitals.

As the 19th century progressed some groups such as those with vision and hearing impairments, were seen as ‘habilitable’, meaning they had potential as worker citizens. Hence, the establishment of the residential schools which inadvertently provided the sites for deaf and blind activism.

The new 20th century coincided with an increasing interest in eugenics and Social Darwinism. These ideas were taken up by both liberals and conservatives. The 1903 publication The fertility of the unfit preached sterilisation for people with mental, moral and physical defects. Negative eugenists sought to limit fertility while positive eugenists supported interventionist policies to increase population ‘fitness’. In this context, Plunket was founded in 1907 to train mothers to grow healthy little citizens and soldiers for the (British) empire.

For the ‘unfit’, girls’ and boys’ homes, farm and residential schools and other institutions were developed to keep the sexes apart and prevent reproduction. The 1911 Mental Defectives Act classified groups of ‘other’ into idiots, imbeciles and feeble-minded and the 1914 Education Act made it obligatory for parents, teachers and police to report ‘mentally defective’ children to the Department of Education so they could be subject to surveillance and sent to the appropriate facility. In1925 a Committee of Inquiry into Mental Defectives and Sexual Offenders overtly linked intellectual impairment with moral degeneracy and potential sexual offending.

In contrast injuries sustained in First World War battles led to a new concept of ‘rehabilitation’, of fixing broken bits and making people ‘worthy’ again. In the 1930s surgeons founded the Crippled Children’s Society to deal with physical impairments such as those caused by polio. The first Labour Government’s 1938 Social Security Act founded the welfare state with some disability support and pensions.

But considerable parental advocacy was required for children with learning disabilities whose parents wanted more for them than institutionalisation. The Intellectually Handicapped Children’s Parents Association (now IHC) was founded in 1949. Seven decades later parental advocacy is still required for access to many services and educational support.

In the early 1970s the Accident Compensation Act brought in ‘no fault’ disability support for those injured by accident. It was backed by MPs who had seen war injuries. The 1975 Disabled Persons Community Welfare Act aimed to provide community support for those who impairment was not caused by accident.

From the early 1970s New Zealand disability activists joined the growing international disability rights movement. Significant outcomes included:

  • The 1981 Year of Disabled People, promoted by a Telethon, led to the formation of the Disabled Persons Assembly controlled by disabled people;
  • The right for all disabled children to attend their local school in the 1989 Education Act;
  • The inclusion of disability in the 1993 Human Rights Act;
  • A social model based, 2001 Disability Strategy. It was a result of partnership between Government and disability activists;
  • Vital input into the 2006 UN Convention on the Rights of Persons with Disabilities by disabled New Zealanders and allies. A New Zealand self-advocate for those with learning disabilities now sits on the monitoring committee;
  • Closure of our last institution in 2006;
  • The end of sheltered workshops, and new employment rights for disabled workers
  • NZ Sign Language becoming an official language along with English and Te Reo Māori, and
  • Winning the international FD Roosevelt Disability award in 2007 for disability leadership.

More recently the Disability Strategy has been revised with an Action Plan and a ‘system transformation’ of disability support and services is about to be piloted based on the principle of ‘Enabling Good Lives’.

Our 2013 census revealed 24% identified as disabled. With the addition of family members and carers that makes a large disability constituency. Our official disability policy is underpinned by the social model but operational policy is based on targeting and rationing. We also have two different systems depending on whether the impairment is a result of accident or caused by other means. These tensions ensure ongoing inequity and the need for continued activism. 

8

Hearing privilege and Deaf disempowerment

by Peter Fogarty

The New Zealand Herald recently published a story reporting that Deaf are being “elbowed out of top spots” in their own organisations. It was timely. Recent events have picked the scab off a climate of fear, anxiety and conflict in the Deaf community. The Deaf culture in our own organisations is on life support.

Hearing privilege and Deaf disempowerment are at the heart of these events. But what is hearing privilege?

By definition, hearing people can hear and usually can speak. This creates systematic and structural barriers for people who cannot hear or speak as hearing people do, i.e., the Deaf community.

Deaf are unlike other disabled groups in that their “disability” is linguistic. Deaf can do everything except hear. Every other disabled group has access to hearing privilege.

Naturally, Deaf, like other linguistic minorities, need interpreters to act as intermediaries between themselves and the hearing world. Deaf need to use hearing people to overcome the systematic barriers put up by hearing privilege.

This is why hearing leaders are hired: because of their hearing privilege – that is, their ability to engage with the hearing world on behalf of their Deaf employers.

Hearing privilege is all-pervasive. Hearing people do not have to constantly explain and defend themselves. Hearing people can expect their parents, doctors, teachers, and community will share the same education, culture and language as themselves. Hearing people can expect that they will be represented accurately and fairly in the media.

Hearing privilege is when hearing people decide what is best for the Deaf community without their input, insight, or consideration.

When a hearing person represents a Deaf issue to the wider community, the optics are terrible. It suggests to the world that Deaf are not capable of representing themselves. It suggests that Deaf need interpreters and hearing intermediaries to interact with the hearing community. Utter nonsense. Deaf are proud to represent ourselves and we do not need any hearing person to speak for us.

Hearing privilege means that we, the Deaf community, cannot go and speak with the CEO of the organisation that represents people like us, and expect to be able to speak with him or her in our own native language without needing a $90-per-hour interpreter.

What does it say about a disabled persons’ organisation (DPO) when its CEO is not a member of the disabled community it represents? This is hardly unique to the disability sector in New Zealand or around the world.

According to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), a DPO is considered “to be those comprised by a majority of persons with disabilities – at least half of its membership – governed, led and directed by persons with disabilities.”

In the Deaf sector, Deaf Aotearoa meets these criteria in all but the top position, with a fully Deaf membership, just over half of staff and managers Deaf, and a fully Deaf Board, with directors of companies that it owns being majority Deaf but including a hearing director. Other Deaf-related organisations in the sector mainly have a medical focus on helping hearing people keep their hearing privilege.

It is unfortunate that the hearing community still maintains significant barriers to the Deaf community in New Zealand and Deaf organisations are not represented by members of the Deaf community, but by another cultural and linguistic group.

For every hearing person in a Deaf organisation, there is a very capable under- or unemployed Deaf person that might acquire valuable experience that is difficult to acquire anywhere else except the Deaf sector because of the systematic barriers of hearing privilege in the wider New Zealand community.

One of the unfortunate consequences of hearing people working within Deaf organisations is that their well-meaning hearing activities sometimes disempower Deaf. Too often, control of organisations is handed to hearing people because of their hearing privilege, i.e., because they may have excellent written English, higher qualifications, and are seen as allies.

The attempts of hearing people to mediate situations for Deaf may result in situational disempowerment, which can lead to economic disempowerment. The goal of hearing people in a Deaf organisation should be to ensure communication access, not disempowerment in any form whether intentionally or unintentionally.

Stating that the appropriately qualified Deaf person for the job could not be found is economic disempowerment, not only for the Deaf candidates who missed out, but also for the Deaf organisation, which must now employ expensive interpreters to facilitate communications with their client base, and which possibly experiences high turnover of Deaf staff who become alienated from their hearing managers who cannot speak fluently in sign language or respect Deaf cultural practices even after several years.

Few other communities need to spend significant amounts of money relative to their basic income to live a normal life. Some Deaf may spend up to $20,000 per year on interpreters to access hearing privilege.

As long as hearing people advocate for Deaf people, the wider community continue to have their perceptions of Deaf shaped by other hearing people, not by Deaf themselves, and hearing people continue to profit off Deaf people.

Under the human rights principles outlined by the UNCRPD, we have the right to represent ourselves in all matters that involve us. We have the right not to have our minds, language, and institutions be colonized by people with hearing privilege. We have the right to protest about matters that involve us. We have the right to have our language and culture respected. We have the right to access and fully participate in society. We are Deaf and proud.

Hearing privilege is blocking us from enjoying our birthright. Please stop hogging the hot seats and check your privilege.

16

The Family Carers case – here we go again!

by Rosemary McDonald

Oh, yes indeedy, I would much rather be "out on the harbour" than sitting here in my bus with Peter snoring away behind me, writing yet again about this sorry issue.

Forever the multi- tasker, I have managed to combine this exercise with transfusing our failing deep-cycle batteries with mains power for a night, which also enables me to use this batteryless old laptop to keep anyone interested informed on the latest development in this ongoing saga.

First there was Hill v. IHC and HFA (way back in the mists of 2001), in which the then Complaints Review Tribunal found that the policy of not paying family carers was discriminatory.

IHC was told to go forth and discriminate no more.

Ruth Dyson announced that work was underway to address the issue of paying family carers and develop recommendations that were (she hoped) “fair and consistent across the board.”

It didn’t pan out that way and in 2008 the Atkinson case went to the Human Rights Review Tribunal.  The decision of the Tribunal was released on January 8 2010, finding:

“… practice and/or policy of excluding specified family members from payment for the provision of funded disability support services is inconsistent with section 19 of the New Zealand Bill of Rights Act 1990 in that it limits the right to freedom from discrimination, both directly and indirectly, on the grounds of family status, and is not, under s 5 of that Act, a justified limitation. “

The Misery of Health, of course, disagreed with the Decision of the Tribunal and took the issue to both the High Court and the Court of Appeal – losing resoundingly in both venues.

However, we need to back this bus up a wee bit in order to set the scene for the Spencer Case.

When the HRRT released its decision in January 2010 the Misery of Health successfully applied for a Suspension Order under s 92O (2) (d) of the Human Rights Act. Said section of the HRA states:

(d) to provide that any remedy granted has effect only prospectively or only from a date specified by the Tribunal:

In plain language, the order effectively enabled the policy (of not paying family carers) that had been found to be illegal to be legal for 12 months after the expiry of the appeal period or the final determination of an appeal, whichever event occurred sooner.

Conveniently (and of course completely coincidentally), the Appeal Court decision for Atkinson was released on May 14 2012 and the Ministry opted not to take the issue to the Supreme Court.  With a year up their sleeve under the Suspension Order, they had plenty of time to prepare for the May 2013 Budget reveal of the Part4 amendment to the Public Health and Disability Act – and we all remember that steaming little legislative pile.

However, Margaret Spencer (who was not an Atkinson plaintiff but had also made a complaint about the offending policy) took her own case to the High Court. Justice Winkelmann said of the Suspension Order...

In the event that I am wrong, and the Tribunal did have jurisdiction to make the suspension order with the effect that the Ministry’s policy was deemed lawful, I have nevertheless found that the order is so affected by procedural defects that it is a nullity. First, the Tribunal failed to consider all of the factors, listed in s 92P, that it was required to take into account in making an order under s 92O. In particular, it failed to consider the impact of the order on interested third parties. Secondly, given the unusual nature of the order sought, expressed as it was to retrospectively “suspend” the application of a declaration as to human rights, the Tribunal ought to have held a hearing before making the order. This would have enabled examination of the implications of the application for a suspension order, and allowed for the hearing of third party interests. Finally, I have found that the Tribunal was obliged to give reasons for its decision under s 116 of the Human Rights Act or, alternatively, by the principles of natural justice.

The Court of Appeal for Spencer was inclined to agree.

Margaret Spencer won her case, and on the back of that decision (as far as I can work out, because this is all getting very confusing!) other affected persons – ”third parties” – now have leave to take our case to the Court.

Yes, Peter and I are on the list of plaintiffs for this case. We made our first approach to the HRC in 2008 and were assured that the outcome of Atkinson would apply to us.  We have had to sit back and wait as patiently as possible to see if a window would open a crack to allow us and a handful of others to have a shot at justice.

For the record, had the Miserly played fair and accepted the HRRT decision in January 2010 and allowed Peter to use his allocation of Individualised Funding to pay me as his chosen carer we would not be claiming "back pay".  The slight (bearing in mind that as a couple,  my income would have affected Peter’s eligibility for the Supported Living Payment) but welcome increase in our household income would have at least helped us to be in a better position to cope with the debt we found ourselves in at the end of 2010.

We are being represented by the Office of Human Rights Proceedings, who successfully argued on behalf of the Atkinson plaintiffs.

Have no doubt; the Misery of Health and Crown Law are not going to make this easy.  They have already thrown down the gauntlet, and so far they are running true to form.

As we commented the other day to the other plaintiffs, Peter and I sat in on some of the Atkinson and Spencer hearings and participated in the "consultation" workshops run by the Miserly in late 2012, so we have had exposure to the contemptuous attitude of them and Crown Law for disabled New Zealanders and their chosen family carers and we thought we had been inoculated somewhat.  We are going to have to harden up, as having the toxicity aimed at us personally is more than a tad affective.

Having the opportunity to meet some of the other plaintiffs has been a privilege.

We are a diverse group, as diverse as the disability community itself, and yet our stories are almost boringly similar.

Some time ago I threatened to subject the PA community with a post entitled 'NASC: Not working for us, but abandoned the idea as it was just simply too damn depressing.

A new post, 'NASC ... is it working for anybody???' just might be in the pipeline. 

To leak just a dribble of Crown Law’s line of defence in our case: they are very keen to avoid any discussion of the issues all of us have had over the years with our respective NASCs.

Very, very keen.

They criticise the HRRT in Atkinson for stepping outside its scope by suggesting changes to the NASC system of which even Ruth Dyson said way back in 2001 ...

... for many, NASC is the main obstacle to people receiving good services rather than the entry point.

It was in that speech to the Southland IHC Parents Conference in October 2001 that Ruth Dyson noted that the Government’s exemption under s 151 of the Human Rights Act was expiring at the end of that year.  She set up the working group mentioned earlier to look into the issue of paying family carers and she also acknowledged that the Complaints Review Tribunal for Hill had ...

...acknowledged the rights of family members, including parents, to apply to be paid caregivers for one or more of their family.

FFS, that was 16 bloody years ago!

They all knew this was coming...and the best they could come up with was a shitty piece of legislation that the Court of Appeal for Spencer so eloquently described thus:

It contained a number of features that are traditionally regarded as being contrary to sound constitutional law and convention – on the Ministry’s interpretation it has retrospective effect, authorises discriminatory policies, withdraws rights of judicial review and access to the Tribunal and did not go through the normal Parliamentary Select Committee and other processes.

We are the fourth wave of plaintiffs taking this issue to the Tribunal or a Court. I’m thinking of the case as the Final Conflict.

We are not many.

There are six families.

There will be no fiscal apocalypse if we receive the justice we have waited nearly a decade for.

We are also not holding our collective breath.

We know our enemy all too well.

15

Being Inconvenient

by Fiona McKenzie

The thing about Twitter is that is forces you to choose your 140 characters carefully. 

To say what you really think as artfully and briefly as possible.

To be pithy. 

Understood. 

So when Nicky Wagner gazed out of her inner city high rise window at the twinkling harbour below and found herself trapped by circumstance, she shared her thoughts with her followers like this.

Screen Shot 2017-06-19 at 9.19.58 am

The jaunty little exclamation mark like a little kick in the guts. 

There was a bit of a social media outcry which drew the usual backlash of “lighten up” and “sheesh you can’t say anything these days”.

Then came Nicky Wagner’s half arsed “apology” about being sorry if she offended – without acknowledging why, given her portfolio of Disability Issues, her tweet was so tone deaf. 

She followed that with a weird justification saying “we all would rather have had the meetings out on the harbour”. 

Why? To get away from the annoying disabled people who can’t get onto boats?

She has revealed herself to be the wrong person for the job. 

Her tweets are as naive as they are patronising. I don’t want her representing issues pertaining to my daughter because I see no evidence she really gets it. 

Eighteen years ago when Claudia was born, we had to start apologising for the inconvenience of her. 

It wasn’t something we realized we had to do, until we got the signals from other people that our apologies were expected. 

Here are some things said and done to us to make sure we understood just how inconvenient we were:

  • A nurse complained that we had been in hospital so long we were in the way. 
  • A nurse complained Claudia's lack of understanding her made her job harder and the extra effort was annoying. 
  • A teacher complaining to us that Claudia had “mucked up all the books” which had been given to her to keep her quiet in a corner of the classroom. It was inconvenient to her that she had to reorganize them. We had no control over what happens at school.
  • A teacher complaining to us that jotting down information about Claudia’s day, including information about her toileting, was inconvenient to her. 
  • A school secretary sighing pointedly and telling us how inconvenient it was that a row of hooks had to be removed to accommodate a new accessible toilet for Claudia at school.
  • A teacher being furious at our lack of appreciation for a new changing area they had put into the school to accommodate our 5 year old. It was a baby change table attached to the wall. Completely unworkable for a primary school aged child. Taking it out again (why did they put it in?) was going to be horrendously inconvenient. 
  • Overhearing a Ministry of Education official being briefed on their next meeting (us) and hearing ourselves described as ‘more vexatious parents” and then having to sit through a meeting where there were serious issues without complaining too much because it hurts being called “vexatious” as if our concerns were annoying and trivial and not that real. 
  • Finding out that “vexatious parents” is in fact a term they use to condemn us all into a single pile of complainers.
  • Understanding that they see the meetings with people like us as an inconvenience they have to go through in order to appear concerned.
  • Being told (frequently) that events we have been invited to as a family, wouldn’t be “appropriate” for Claudia, that we might find her being there inconvenient. 
  • Harrumphing, eye rolling, staring at the supermarket regardless, but more so if we take too long to walk down the aisle or Claudia stands shouting at the frozen macaroni cheese or she tries to watch the scanning and numbers of the person ahead of us at the checkout.
  • Shushing at parades, outdoor performances and events because she’s excited to be out, while all around us the joyful squeals of young children are smiled at.

These are all reminders of how inconvenient she is to the lives of the able-bodied, the neuro-typical and the busy and active. Even those paid to be around her. 

“Sorry” “Sorry!” “I’m so sorry” “Okay, sorry about that” “Oops! Sorry!” 

So there she is, our Minister for Disability issues. Letting us know without room for misunderstanding, that disability is inconvenient for her. 

She’d rather not be having to deal with meetings about disability.

She’d rather be on the water! 

Sigh. How inconvenient it all is! 

Sorry Nicky 😦

But Hey! Cheer up! 

After your boring meetings and your annoying job representing issues that have no impact on YOUR life, you can get on with your sailing! Or mountain biking! Or having an afternoon off! 

But we can’t. Because disability IS our life. There is not one day in our lives where having a family member with disabilities hasn’t impacted our lives, dictated our decisions, diminished our potential. 

The biggest barrier to inclusion in our own life has always been other people’s attitude. Peoples attitudes make or break us. 

Her tweet felt like another little face-slapping sigh about how inconvenient people like my daughter are. 

We need someone as Minister who has an inkling of insight, a snotch of understanding, a skerrick of enthusiasm, a smidgeon of sincere appreciation for what it is for people like us. 

And our Prime Minister calls it a "storm in a teacup” 

No Nicky, no Bill – this isn’t a storm in a teacup. 

It’s a revelation that you are so woefully out of touch you can’t even see why.

Fiona McKenzie blogs at My Perils of Wisdom.