Access by Various artists

53

The Problem with the Greens’ Disability Policy – A Description

by Jonathan Mosen

Here’s a challenge you’re unlikely to have been given before. Watch the last 10 minutes or so of the movie Fatal Attraction with the screen switched off or with your back to the screen. If you’ve never watched it, I challenge you to tell me how it ends.

That’s just one example of a movie that I, as a blind person, have found impossible. When TV first entered the picture, script writers and producers treated it as radio with pictures. In the US, many popular radio shows moved to television, and largely retained their radio-style dialogue. As a kid in the 1970s and 80s, I found it fairly easy to watch TV, with the possible exception of a few cartoons.

It’s a different world now. Each time a season of House of Cards has appeared on Netflix (yes, bite you Sky, I use Netflix) I “watch” an episode, then I have to Google a catch-up on-line to get a written summary of the episode, since a lot that goes on is visual. I would have been totally in the dark about that naughty three-way in season two had it not been for a textual summary.

There is a solution, and it’s called audio description. Audio description is to blind people what captioning is to  deaf people. Enabling it on a DVD or digital television gives you additional narration describing what’s on the screen.

TVNZ to its great credit is now audio describing a little content.

That brings me to the election. The right will of course stick to its talking points about the unwieldy multi-headed monster that would be a coalition of the left. As someone who believes in the role of the state to equalise opportunity, I feel like I’m spoiled for choice, and I’m loving it.

I’m a true swinging voter. Not like that House of Cards episode I mentioned previously I hasten to add, but in the sense that I genuinely do listen to all arguments and take my little votes seriously.

The Green Party announced its Disability Policy on Friday, and there is much to applaud. Many parties still seem fixated with medical issues which, while important, belong in a health policy. The Greens get it. Disability policy should be about participation, socialisation and inclusion.

On their Disability Issues page, you’ll find a summary of their top three priorities. Priority one as listed on that page reads:

Amend the Broadcasting Act and Telecommunications Act to require targets for phasing in 100 percent captioning for Television New Zealand by 2017 (TV1 and TV2) and TV3 by 2020. Other broadcasters will have targets and timeframes set on a case by case basis.

I don’t for a single second begrudge deaf people their captioning, and applaud the Green Party for appreciating that full participation in society includes things such as being able to enjoy a TV show with your family. But television is an audio and visual medium. Where’s the reference to audio description?

I expressed my disappointment about this on Twitter last Friday to the @NZGreens account, and was directed to the full policy. I downloaded it. It was in Microsoft Word format, poorly structured without the use of styles so it was impossible to navigate from section to section with a screen reader. That’s not what I’d expect from the Green Party.

But finally, on page nine, I did find a one-sentence reference to the Green Party wanting to set quotas regarding audio description. No specifics were offered, a marked contrast to the clarity on captioning.

Not surprisingly, all the coverage I came across in the media mentioned the Greens’ commitment to captioning, with not a word about audio description.

It feels like the Greens have prioritised the needs of one deserving disability group over another, and it could have so easily been avoided. What if the priority as listed on its Disability Issues web page had read like this:

“Amend the Broadcasting Act and Telecommunications Act to require targets for television to be universally accessible. This includes phasing in 100 percent captioning for Television New Zealand by 2017 (TV1 and TV2) and TV3 by 2020. Other broadcasters will have targets and timeframes set on a case by case basis. It also includes the audio description of x% of content by 2017.”

Why is this important, given that the Greens are highly unlikely to be leading a government after 2017? At best, they’ll be a junior coalition partner, and this policy could well get lost in the negotiation shuffle anyway. It’s important for two reasons.

First, it’s not often that people who aren’t deaf or blind give any thought to how those with either sensory disability consume television. The media attention, modest though it may be, helps to raise awareness.

Second, this policy just feels like capture to me. It’s not consistent with Brand Green, which I thought tried to be fair, considerate and inclusive.

Fifteen years ago, I completed a Master of Public Policy thesis at Victoria University on benchmarks that might be designed to measure equality of opportunity for disabled people. In the first section, which summarises the story so far, I made the point that public policy in the disability sector has evolved not as a result of any coherent agreement about the role of government in the sector, but because of a series of accidents and squeaky wheels.

And yes, in a number of respects, the blind have benefited from this lack of a clear public policy framework. The blind organised early, in 1945, to form their own advocacy organisation founded on union principles out of the sheltered workshops of the Institute for the Blind. They have reaped the rewards of that in some areas including social security. But despite being a beneficiary of that success, squeaky wheel politics is not a sound basis for quality public policy, particularly when it comes to people so vulnerable and marginalised as disabled people.

The blind sociologist Peter Beatson once drew a compelling analogy between disability and Maoridom. He compared each disability type with iwi, (Ngati Blind, Ngati Deaf etc), but also expressed the view that there is a series of underlying challenges that unite us, just as there are policy issues that unite Maoridom.

I have vacillated about whether the so-called “disability sector” is more for the convenience of public policy makers who want to lump us into one big homogeneous group rather than consider each disability’s unique needs, or whether good public policy can come from a cross-disability approach to public policy. The UN Convention has proven conclusively that the latter is both possible and useful. But for it to work, those drafting policy have to be careful not to prioritise one disability over another.

The election is still a month away. I call upon the Greens to make the minor tweak required for it to be equitable, for it to treat with equal prominence the needs of those with sensory disabilities who require intervention to fully enjoy television.

Oh, and Fatal Attraction? I’ve seen it audio described now. Finally, I know how it ends!

48

Respect, please

by Victoria Manning

A high profile person recently lamented to me how their life was transformed and they understood ‘everything’ after spending an hour in a wheelchair.

The real question here is, why the need to try to understand what it's like to be disabled? We don't paint our faces brown to try to understand what it's like to be Māori. Or, try to simulate monthly period expereinces for men to understand what it’s like to be a woman. Shudder at the thought! We just accept and respect that some experiences of being a man/woman or Māori/Pākehā are different.

It’s often said that the biggest barrier to disabled people’s participation in society is attitudes. I reckon it’s more a blatant lack of respect. Respect for us as people. Respect for our dignity, which is no less than that owed to a non-disabled person.

Evidence of this lack of respect is rife. It’s common for people in wheelchairs to be asked by strangers if they can have sex. Since when is it respectable to ask a stranger about their sex life?!

Disrespect for disabled people can also be seen in government circles. The number of times I’ve seen government people say that disabled people have high expectations and should remember the good things we have, verges on intimidation and bullying. The implication being that disabled New Zealanders should have lower expectations than non-disabled New Zealanders. Prominent lawyer and blogger Andrew Geddis noted that the government wouldn’t treat the fishing sector the way it treats the disability sector. Can we have more respect, please.

Awareness training that tries to provide non-disabled people with a minute opportunity to experience disability is, unsurprisingly, highly controversial. While it may seem effective, other methods of raising disability consciousness and respect for disabled people need to take centre stage. The recent Campbell Live feature of parking wheelchairs in regular car parks is a creative example.

Don’t focus on trying to understand what it’s like to be disabled. Put bluntly, an hour in a wheelchair isn’t gonna come close. Instead, show respect to disabled people.

We are people after all.

Victoria is a prominent Deaf policy analyst. This post is not on behalf of any organisation.

28

Power to (all) the people!

by Ezekiel Robson

The society we live in today has been shaped by many struggles, social movements, and revolutionary forces, most aiming to create a more egalitarian existence.  Women, indigenous peoples, LGBT communities, and even animals have secured hard won recognition of their basic rights and inherent value, causing improvements to the worlds they live in.  But sure, we’re still not there yet, the struggle never ends

It’s said that one of the last major frontiers for society to tackle is acknowledging and upholding ‘disability rights’ around meaningful inclusion and accessibility for people with impairments.  As a disabled person, it’s great to be living in this era right now, seeing us grow in skill and confidence to raise awareness, and to enforce our needs. 

However if that’s true, then one of the last bastions within that frontier would have to be our rights and active participation in political and civic matters, which lags significantly behind our (albeit limited) progress in health, education, independent living etc.

There is a country which holds regular local and national elections, where some eligible voters are systematically subjected to a violation of that most simple of democratic standards – to cast a secret ballot.  This is done under the guise that modified procedures revealing their chosen vote to others is their best/only option and for their own benefit anyway.  In this same country there is a popular belief that learning disability and/or periods of mental distress renders a person ineligible, incapable, or uninterested in meeting the legal obligation to be enrolled, or the choice to cast a legitimate vote. 

This is not war-torn Syria, isolationist North Korea, or even Nazi Germany of days gone by – that country is New Zealand as at 2014, and those people are blind people, and those having treatment in mental health facilities (but not charged with a crime), respectively. 

Article 29 of the UN Convention on the Rights of Persons with Disabilities guarantees us political rights and the opportunity to enjoy them on an equal basis with others.  Having signed up to the Convention, not only is our government required to facilitate this, it is responsible to actively protect these rights from any (of its) action or inaction which diminishes them [4.1(d)/(e)].  At least the wheels are slowly but surely beginning to turn

If the latest census statistics are any indication, then our potential to exert influence on political bodies should warrant reasonable consideration by those in search of ‘missing’ voters.  Given the propensity for accidental injuries and illnesses (not to mention poverty) leading to impairments, and links between aging and disability, then to argue against any and every possible step towards our inclusion now, is to argue for your own exclusion in future. 

However, what lies behind this is that political parties themselves are not unlike any other social institution grappling with whether to/how to attract or reflect the range of identity politics ‘minority group’ blocks.  This puzzle now increasingly includes meeting disabled members/potential supporters’ particular needs for information in accessible formats, physically accessible meeting/gathering spaces, and diverse communication or language needs.  And of course, parties are not immune from the medical, charity, religious, and inspiration-porn attitudes/paradigms found elsewhere. 

Right now it seems just as difficult to affect change from within, as externally, given the pervasive effects of generations of demoralising labels, and marginalising of us in others’ eyes.  It is no wonder that we very rarely see disabled people involved in parties or putting themselves forward for election into governance roles in this country. 

Politicians regularly parrot our aspiration for “nothing about us, without us” back at us, even though most can not genuinely count themselves as “us”, or wouldn’t want to, probably out of fear amongst other things. 

Every single party in our parliament under-represents disabled people in the number of elected MPs.  Some parties don’t have any such candidates and the majority of examples in this election’s List rankings are mostly token gestures – almost at the bottom of the list.  A community is only as strong as the least represented members of that community. 

We must collectively and substantially raise up our own leaders willing to bring a whole new level of meaningful representation forward, alongside our valuable allies, and not settle for just any political masters imposed on us by well intentioned parties simply perpetuating the types of exclusion and discrimination in broader society which we’re working so hard to destroy. 

We needn’t look farther a field than just across the Tasman to glimpse the kind of representation which awaits us in future. 

Power to the people!

12

What looks good to me

by Chelle Hope

Living with spina bifida can be physically exhausting.  Sometimes that gets me down.

I often feel a psychological detachment from my body, a sort of disembodiment that comes from a loss of control I feel over my own health and wellbeing.  I constantly curse my body for making me sick, preventing me from doing the things I want to do, for not working properly.  And yet, the consequences can be pretty grim if I don’t look after myself.  That involves getting to know my body and what it needs, being kind to my body and embracing imperfection.

Recently, I joined a gym because I am fat and unfit and I would like to be less fat and more fit.  I was fed up with feeling helpless and unable to keep my own body healthy.  I am doing something positive and proactive for my overall health and I am hopeful that it might help with not only my physical fitness but also my mental health.  Winter is tough for everyone and I am prone to ‘SAD’ (Seasonal Affective Disorder), so it’s important for me to get out of the house and to keep my energy levels up, too.  

Two days after my first couple of sessions at the gym, I was scared to get out of bed because I was weak and in so much pain that I was afraid I might fall trying to get back into my wheelchair.  It had not occurred to me that I might need to pace myself, to begin with, for my own safety. 

Anybody who has exercised knows the horror of gym pain when you start out.  When you add that to chronic pain that is already a constant, the result is, well, very bloody sore.  My overexertion was a mere hiccup.  After a few days of R&R, I am back at the gym, being sensible about how much I can safely do and I am loving it.  

A positive body image is important not only for my self esteem but for my overall sense of self.  Happily, having a positive body image need not involve bikini bodies, svelte physiques, or having the perfect symmetry of Da Vinci’s Vitruvian Man.  Anyone can have a good body image, including a 33 year old, (soon to be less)fat, short, lopsided paraplegic.  I like the way I look.  I’ve genuinely never looked at anyone else and wished I looked like them.  Exercising is helping me to appreciate my physical self more.  I am confident that it will help me to feel even better about being in my own skin as I progress.

I made the decision to start exercising for my health.  It has little to do with how I look.  A toxic aspect of popular culture I have managed to escape is that of comparing myself with others who are held up as aspirational models of physical perfection.  I have spina bifida to thank for that.

I look so different to what is considered ‘perfect’, I had to redefine what it meant to look good from a very early age.  A positive body image for me then is seeing myself in the mirror, knowing that the image staring back at me is as fit and healthy as she can be and is being well looked after.  That is what I am striving for.  That is what looks good to me.

34

Paying Family Carers - What was all the fuss about?

by Rosemary McDonald

Peter and I went out fishing on ANZAC day.

We used to be regulars on this particular west coast charter boat, ferreting away a few dollars so we could get out maybe half a dozen times a year. The trips usually paid for themselves in terms of fish caught,  but the major benefit was always Peter being able to go out and participate in an activity he loves, with other fishermen... just being one of the boys.  We’d come home tired and wet and blood splattered... all good Kiwi stuff.

Anyway, it had been a while since our last trip.

We had talked about the Family Carers Case as part of the normal ‘waiting for a bite’ chat that goes on, and our absence from the boat had been explained as due to lack of $$$. So, when the skipper’s wife saw us on the wharf that afternoon, her first words were, “You guys will be so pleased now Rosemary can get paid!”

We took (another) deep breath and tried to give a précis of what happened in Parliament on the 17th of May 2013.

We explained how maliciously difficult the government had made it to actually access the much-publicised Funded Family Care scheme. We explained how only a handful of people had successfully applied.

When we told her that spouses and partners were still unable to be paid,   she said “Oh,  so you’re going to have to take another case to the Human Rights?”  I had to walk away at this point. Peter explained about section 70E of the new Act:

On and after the commencement of this Part, no complaint based in whole or in part on a specified allegation may be made to the Human Rights Commission, and no proceedings based in whole or in part on a specified allegation may be commenced or continued in any court or tribunal.

So, this is where we’re at after well over a decade of discussions, mediation, five weeks of Human Rights Review Tribunal hearing, two weeks in the High Court and just over a week in the Appeal Court.

In case you missed the news... we bloody well won.

However, it’s not even a case of being back to square one. It’s worse.

Describing the effect this had on Peter and me is personally very difficult. Rights were fought for. Rights were casually set aside. The right to fight for our rights was equally as casually taken away.

It feels like I have no right even to state our particular case, even in this supposedly supportive environment.

So, I’ll take us all back to 2008. I simply could not put the case any better than this reporter:

“I'd asked what he (Stuart Burnett) had made of Ministry of Health officials at a hearing in Auckland of the Human Rights Review Tribunal, officials who had used words such as "frameworks" and "initiatives" and who had talked about the strategies and supports in place which benefit the lives of disabled people.”

After fifteen months of deliberation, the Tribunal released its decision.  Required reading for everyone interested in this issue. It is written in plain English and it covers ALL the relevant bases.

Of significant public interest at the time was the assertion from the Crown that simply removing the prohibition against paying family carers would cost $17 to $593 million. That somewhere out there were 30,000 New Zealanders with severe disabilities requiring a high level of care that were not known to the NASC agencies. That the currently unpaid family carers of the unknown 30,000 severely disabled New Zealanders would come out of the woodwork with their demands to now be paid. Again, let me pass you over to one better qualified to comment.

In his evidence to the Tribunal, Brian Easton (to call Brian Easton an ‘economist’ would be like calling U2 a ‘boy band’) expressed somewhat wry concern at ‘the numbers’ and the resultant costings presented by the Ministry:

“It is not necessary for this case to reconcile the tabulations for the purposes of this claim. Suppose the Ministry of Health is failing to identify large numbers who are entitled to its support services. That is clearly a matter of public policy concern, but it is not the focus of the claim which is about those who are in existing receipt of support.

In the event that the Tribunal’s decision were to encourage others in need to apply for their support entitlements, then while this may be fiscally expensive, this reflects neither a change in the policy framework nor the Tribunal’s decision but a reduction in the failure of delivery coverage within the framework.” (Boldface mine)

That’s kind of what claimant Stuart Burnett said:

Everything in the garden is perfect.  Yeah, right!”

Catherine Masters followed this case as the Crown took it to the High Court.

“She (Martha Coleman, Crown Lawyer) said the system was a good one and key services existed to fill the gaps.

Outside court, Cliff Robinson had said how rosy they make the system sound, to which Peter Humphreys had laughed ironically and said "yeah, I want some of that".”

Hopefully, dear reader, you will have taken the time to read the links. I hope I have made it clear that while this case was predominately about discrimination, which was proven; it was almost equally about highlighting serious flaws in MOH disability support system for those with high, very high and complex care needs.

What do Peter and I feel about this? What this guy says, only with more swearing and a river of tears.