Access by Various artists

57

It’s just a bout of Chronic Sorrow

by Hilary Stace

I’m usually full of disability positivity but sometimes I have a bout of Chronic Sorrow. Chronic Sorrow is a term named by some wise person for the condition some parents of disabled children have. It can be just below the surface or well-buried, but it’s almost shameful to admit to. It’s a sort of grieving for the so called normal child who isn’t. It is usual to experience some grief process at diagnosis but then most parents just get on with it and soon realise that there won’t be a normal trajectory and the path is likely to be challenging at times.

Most parents are devoted to, and love passionately, their disabled child and wouldn’t change anything about them, but there are times when the impact of the real world is just tough and the years of battling get to you. The endless explaining and assessments and form filling for a small disability allowance or a couple of hours of teacher aide time. Being prepared to scale the next barrier. Always being on duty. Nothing is straightforward and everything is time-consuming.

Transition times are risks for triggering Chronic Sorrow. Such as when other teenagers are leaving school to go to university or leaving home for work or travel. They may have learnt to drive. You might have been lucky to find a school that will ‘take’ your child. And now yours might be staying put at school, often without any qualifications and despite everyone’s best efforts nowhere near the aspirational NCEA Level 2 that is now the essential ticket to successful adulthood.

What’s more, our kids are staying put in the same house and any processes into other residential arrangements are long and fraught. We continue to drive them around or cross our fingers that public transport will work smoothly. Then the other young adults graduate with degrees and have partners, marriages and children – some even in that order. Ours go to day programmes if there is a local one. A minimum wage part-time job seems a pinnacle of success.

Arrangements are fragile. Don’t hold your breath. That excellent teacher or teacher aide moves on, the inclusive sports team disbands, the job pilot or course comes to an end, or the accommodation falls over. Back to square one. You don’t want other people’s pity or charity. You don’t want good deeds done to your disabled offspring ‘as a favour to you’. What about because the young disabled person is a human being with rights, dignity, feelings and a contribution to make? Some security would be nice. In the back of your mind that fear about what will happen when you are no longer here.

Another crisis could be just around the corner. A recent bout of Chronic Sorrow was triggered after an understanding talk with my son’s employer. After 10 years as a loyal employee the job was not working for him or them. And yes I could see that. But what chance another job when even university graduates are unemployed? Meanwhile those Government messages on the importance of work grate sharply. But where are those patient, inclusive, disability friendly employers?

Success stories are few. Friends and colleagues with disabled family members are also struggling with poverty, fatigue, irregular or inadequate services and fragmented support.

Where are our champions around the Cabinet table, or other levels of government? If there, often invisible. Meanwhile the public message is cut, cut, cut.

In my PhD thesis I used the term ‘love and luck’ for the qualities required for good outcomes for autistic and other disabled children. I borrowed it from my wise Aspie friend Matt Frost who used it to describe the qualities he had found essential for his own inclusion. Love means endless advocacy by a family, most often a mother, and luck means finding the right people, services and support when you need them.

On the down side, when these are in place you sometimes get the media stories which the late Australian activist and comedian Stella Young called ‘inspiration porn’ which only serve to further other and exclude. (Amazing people who have ‘overcome’ disability. So why haven’t you?)

Meanwhile the stories of those with neither love nor luck can be read in negative articles. But why should such intangibles as love and luck be required to raise disabled children, and for them to grow up and to grow old with dignity in 21st century New Zealand?

Currently we are on the lookout for some luck. That the right people and opportunities will turn up. Not just for us, but for everyone who needs it. As one door closes a new one opens and all that. A more positive future.

Today I am tired. Tomorrow I will bounce back with hope.

87

Some aspects of New Zealand’s disability history – part four

by Hilary Stace

During the 1990s, some New Zealand disability activists, disenchanted with the inability of "the market" to provide appropriate or adequate support or services, targeted sympathetic Opposition politicians.

As mentioned in part three of this series , the activists taught them about the social model and disability rights. The election in November 1999 of the new Labour-Alliance coalition government provided a window of policy opportunity for a new partnership between politicians and the disability community.

Soon after winning the election, Prime Minister Helen Clark appointed the first Minister for Disability Issues, Ruth Dyson, who set up the Office for Disability Issues in the Ministry of Social Development (previously the Ministry of Social Welfare). Significantly, the Office would have a governance group of consumers – disabled people and advocates. In 2001, the New Zealand Disability Strategy (NZDS) was published after a lengthy consultation led by disabled people.

What sets the NZDS apart from previous disability policy is that it is explicitly grounded in the social model of disability:

Disability is not something individuals have. What individuals have are impairments. …Disability is a process which happens when one group of people create barriers by designing a world only for their way of living, taking no account of impairments other people have.

Hence people are disabled by the system: ‘disabled people’. The Office for Disability Issues was charged with monitoring progress although legislative compliance with the NZDS was not required. Following the NZDS Strategy came reports such as the 2003 To Have an ‘Ordinary’ Life report which explained how the social model should work for adults with intellectual impairment in the post-institutional era. Other reports outlined requirements for disability support in education and employment.

During these years, New Zealand was actively involved in the drafting of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The chair of the Ad Hoc Committee chair was a New Zealander, several disabled people were part of the official delegation, and the Office for Disability issues provided research and secretariat support. Robert Martin, a New Zealander who had grown up in an institutions, addressed the United Nations in his role with Inclusion International.

The passage of the 2008 Disability Act to ensure New Zealand law was compliant with CRPD, and New Zealand’s ratification of the Convention in September 2008, were two of the last actions of the Labour-led government.

Robert Martin at the United Nations. In 2014 he was nominated for the international committee monitoring the CRPD. Photo from People First NZ

In summary, some highlights of the 2000s

  • The disability sector-led 2001 Disability Strategy and the 2006 CRPD, into which many disabled New Zealanders and their allies had significant input
  • Closure of our last institution, Kimberley, in 2006 after a long process to placate anxious parents and communities
  • The end of sheltered workshops and new employment rights for disabled workers
  • NZ Sign Language made an official language of New Zealand
  • ACC provisions extended
  • In 2007 New Zealand won the international FD Roosevelt Disability award for leadership in disability policy

However, things were not improving for all disabled people. Following concerns raised by consumers about abuse in post-institutional residential care, Parliament’s Social Services Select Committee consulted with the sector for an Inquiry into the quality of care and service provision for people with disabilities. The inquiry began in 2006 and its report and recommendations with cross party support came out just weeks before the 2008 General Election.

The new National Government’s response to the report was to establish a ministerial committee supported by some departmental chief executives and officials, and a 2010 Cabinet Paper outlining a "new model" of disability support.

Since then there have been various projects under the "new model", including Local Area Coordination in the Bay of Plenty, reviews of residential care, and extensions to Individualised Funding. Enabling Good Lives is a Christchurch and Hamilton based person-centred approach encouraging the Ministries of Health, Education and Social Development to work together to support the transition from school of a small cohort of local school leavers with high needs.

Progress included Paul Gibson’s appointment as New Zealand’s first Disability Rights Commissioner in September 2011. A Disability Action Plan 2014-2018 has been developed and a new Independent Monitoring Mechanism comprising the Human Rights Commission, the Office of the Ombudsman and the Convention Coalition (made up of Disabled People’s Organisations) now monitors the CRPD. New Zealand has not yet sign the Optional Protocol allowing individuals to take complaints to the UN under the CRPD.

Fifty years after the 1953 Aitken report led to the escalation of institutionalisation, Helen Clark’s Labour Government set up a Confidential Forum to hear the stories of abuse that resulted from that policy. The 2007 Te Aiotanga the Report of the Confidential Forum for Former In-patients of Psychiatric Hospitals contains testimony from residents and others in state care before 1992, as well as some family members and staff. Many were children – the youngest four years old – when they went into residential care. Although there were occasional references to kind and helpful staff, the report is grim reading.

A Confidential Listening and Assistance Service continued this restorative justice approach to hear stories from those in state care and from those denied human rights and personal identity but this Service is about to close, leaving numerous cases unaddressed. Many are hoping for an official apology for historic abuse.

Disability policy is a mixture of progress and retreat. Negatives included the reintroduction of work-testing on beneficiaries under the Social Security (Benefit Categories and Work Focus) Amendment Act 2013 and Funded Family Care (FFC).

FFC was introduced after the Ministry of Health lost a series of court cases seeking payment for family members to care for disabled people in preference to agency carers. A new section authorising the payment of family carers was inserted in the New Zealand Public Health and Disability Amendment Bill (No 2) and passed under urgency following the 2013 Budget. There are narrow eligibility criteria, the disabled person becomes the employer, and no complaints can be taken on human rights grounds. Not surprisingly only 187 families out of an anticipated 1600 receive the FFC payment. Some other supports, such as the Child Disability Allowance, have become harder to get.

Other legal victories against government in recent years have seen wins for minimum wage payment for residential care staff doing ‘sleepovers’ and for those doing carer relief, and pay equity for carers in residential accommodation. The IHC is heading an ongoing legal case against educational discrimination.

Reports coming out from the 2013 Disability Survey are confirming anecdotal information about the overrepresentation of disabled people in deprivation statistics. Media representation of disability still largely swings between tragedy and triumph.

A major problem remains the funding discrepancy between ACC and Health which shows up starkly in funding and support comparisons between, for example, an adult using a wheelchair as a result of accident in contrast to a similar impairment as a result of a congenital condition or illness.

On the positive side is the educational achievement of many disabled students and there is now no excuse for disability policy and research to be undertaken without disability input and expertise, as in the rights slogan: ‘nothing about us, without us’.

Key to recent disability progress in New Zealand has been the strength of the relationship between the sector and previous Disability Issues Ministers Ruth Dyson (briefly replaced by Lianne Dalziel) and Tariana Turia. Despite 24% of New Zealanders identifying as disabled in the latest Census, the portfolio has low visibility and the Minister is often outside Cabinet. There is now a new Minister, National’s Nicky Wagner, who is yet to make her mark. Disability policy rarely makes headlines, but many of us care.

This is the last of my short series on aspects of New Zealand’s disability history. We walk backwards into the present and future recognising the lives and efforts of those who went before. Titiro whakamuri haere whakamua.

49

Geoblocking, global mode and NZ as a disgraceful accessibility backwater

by Jonathan Mosen

Public relations 101. What do you do when you have unpalatable news that you’d like to stay under the radar as much as possible? One of the oldest tricks in the book is to release it just ahead of a long weekend, especially one of the few days where a newspaper isn’t going to be published. It’s an old trick, used by legal and communications people who haven’t fully grasped that social media makes such strategies null and void.

So it was that on the Thursday before Easter, we learned that a bunch of New Zealand corporates with vested interests are seeking to limit what New Zealanders can do with their Internet.

First, a bit of background.

For some time, CallPlus, which offers Internet access through brands such as Slingshot and Orcon, has provided Global Mode. This feature, included as part of the monthly subscription paid for Internet access, is similar to stand-alone services like UnoTelly and UnblockUS. Using some DNS trickery, they give customers access to services that aren’t generally available in New Zealand.

Popular uses of the service include accessing the US version of Netflix, watching shows on Hulu, and tapping into the great TV and sport content offered by theBBC.

We’re not with any of the ISPs offering Global Mode, but we have UnoTelly’s excellent service set up through our router. Couple that with a static IP address from our ISP, and we can access much of the content we want when at home without any effort at all.

I view the Global Mode offering from CallPlus much like I view ISP-provided email. It’s fine for people with limited requirements, and it’s a good marketing tool, but I prefer to use a specialist provider that is constantly monitoring for changes, and adding new services as the need arises.

Nevertheless, I applaud CallPlus for offering the service, because it’s a user-friendly way to defeat artificial, archaic barriers to accessing content. The Internet is an open, global network. Just as the music industry behaved like ostriches before Steve Jobs showed them a better way, so TV and movie rights holders keep trying to delay the inevitable through geoblocking. The days of being able to maximise revenue by selling country-specific rights, then retro-fitting the Internet with flaky artificial boundaries to protect their investment, are gone. People are gaining too many smarts.

Knowing that overcoming such flimsy technological barriers isn’t difficult, content producers and rights holders have tried to scare people by claiming that those who access content through circumventing geoblocking are pirates. This is hysterical nonsense. Actually, originally my description of this involved a single word describing cow excrement, but on balance I decided to keep it seemly.

We’re not talking Napster in 1999 here, and we’re not talking the illegal torrenting of a movie. I’m no more a pirate for watching geoblocked content I’ve paid for than I am a pirate for watching a DVD in New Zealand that I’ve imported from Amazon.

The vested interests who push this line are dinosaurs on a big brother trip, twisting the facts in a most Orwellian way in the hopes they’ll prevail through confusion and fear.

So, back to Easter Thursday. As reported in this excellent NBR story,
Sky, Spark, TVNZ and MediaWorks are taking legal action to have the CallPlus Global Mode shut down. The first step was the usual one, a bullying legal letter designed to intimidate CallPlus into switching it off. Thankfully, CallPlus seems to appreciate that its legal position is sound, and it looks like it will fight it through the courts if it has to.

Some important objections to the legal action have already been canvased in the NBR story, such as how these companies can possibly think they will deal with the numerous ways a New Zealander has of accessing geoblocked content, besides Global Mode.

I agree with all the concerns raised. Additionally, I’d like to offer a perspective that’s unlikely to get an airing in the mainstream media, which typically doesn’t give accessibility issues any coverage.

All of the companies taking this legal action have shown scant regard for the ability of blind people to access the content they offer. Let’s shine a bit of long overdue light on their shameful performance.

Spark offers a video on demand service called Lightbox. Its site is useable by an experienced screen reader user with certain browsers, but it couldn’t be described as universally accessible. Lightbox offers none of its programming with audio description, the additional layer of audio that tells a blind person what’s happening on screen. Audio description is to the blind what closed captioning is to the Deaf.

TVNZ offers some audio description, funded by New Zealand On-Air, on its Freeview transmissions. But like a growing number of tech-savvy kiwis, I seldom watch TV this way. I want to watch a show when it’s convenient for me, not when a scheduler says I should. Unless I record the show from TV, something that requires a bit of thought and specific technology to do accessibly, I’m out of luck.

TVNZ offers an on-demand service, but audio described content isn’t available on it. What’s worse, a recent update to their iOS app has rendered the service inaccessible on my mobile platform of choice. I wrote to TVNZ the day the inaccessible version was released, and have yet to even receive a reply.

It’s a stark and sad contrast to our public radio broadcaster, Radio New Zealand,which is a world leader in accessibility and ensures that accessibility is taken into account right from the planning stage of a new app or feature.

MediaWorks doesn’t offer audio described content on-air or online, and their 3 Now iOS app has always been unusable by blind people. Again I’ve sought to make contact on the matter, again there has been no reply. A shame, as the 3 News app is an excellent user experience from a blindness perspective.

Sky is just appalling in every respect. No audio description, their website is an accessibility mess, Sky Go is next to impossible, and the Sky app is not much better.

The summary? Internet-based TV in New Zealand is a disgraceful accessibility backwater.

The US is not some sort of promised land by any means. Netflix and Hulu don’t offer audio description either, and the user experience from an accessibility perspective could be better. Hulu in particular has deteriorated in iOS accessibility of late.

The UK, on the other hand, is the place from which I get most of my TV content. Its communications regulator, Ofcom, requires that all networks provide a minimum amount of audio described content, and most networks are comfortably exceeding the legal requirements.

The BBC iPlayer website and iOS app are a brilliant experience, both offering a wide variety of audio described content. Earlier in the week, I also watched a greatChannel 4 drama, audio described, about the forming of the coalition government in the UK after the 2010 election. The Channel 4 website allows one to toggle audio description on and off from within its main player, a very slick setup.

Soon, the ABC in Australia will be making audio described content available online, and I look forward to being able to fully enjoy more content via those means.

Regular readers to this blog will remember my post on Radio Sport’s appalling coverage of the cricket world cup. A couple of weeks after writing that, my daughter and I attended the match between England and Sri Lanka at the stadium here in Wellington. New Zealanders were part of the commentary team, just meters away from us. But because Radio Sport wasn’t broadcasting it, I had to log into a virtual private network from the stadium which made it appear that I was in the UK, and stream the BBC coverage over 4G. The delay inherent in streaming meant that I heard a description of the action people were cheering about a good 20 seconds after it happened.

So while I believe strongly that fighting for the Internet to remain as it was intended, truly global and open, is important in itself, the geoblocking issue is also important because all the companies taking part in this legal action, and some who are not, are derelict in their moral and possibly legal duty when it comes to their content being fully accessible to everyone.

There are similarities to the issues that drove brave and entrepreneurial young people to begin broadcasting offshore in Britain and New Zealand in the 1960s. The people weren’t being given what they wanted by the establishment, so other measures were necessary. In this case, rather than respond on quality, price and content, big kiwi corporates are seeking to safeguard their mediocre offerings through intimidation. The model is flawed, and it’s unsustainable.

This is a serious moral issue in my view and hopefully many consumers will see it that way. Sadly, I don’t have many of these services to cancel here at home. The only company which is a part of taking this legal action that we do business with is Spark. Our Internet is currently through BigPipe, a subsidiary of Spark, which has been a superb provider. But I’ll certainly be cancelling my service with them in protest, and have already let them know why they lost my business. One person won’t matter a jot to them, but I live in hope that I won’t be the only one.

If CallPlus offers a service that meets my needs, I’ll go with them to show my support, and I hope others will do the same.

Meanwhile, it would be nice if these bullying companies stopped behaving like blind people don’t exist, or are unworthy of the same service everyone else receives. If they did, geoblocking wouldn’t be necessary for me to enjoy a wide variety of TV content accessibly.

This blog post has been republished from an original post at the excellent Mosen Consulting website.

56

Here's to them

by Russell Brown

When Fiona and I became parents 24 years ago, we had no way of knowing that our two sons' autism would become the central fact of our lives.

It's been hard at times. Really hard. You're parents for a lot longer in our position. It grieves me when I see parents still facing some of the same bullshit we did, the more so given that most of them don't even have access to the same level of support that we did 20 years ago. I'm constantly mindful of the privilege – the ability to argue on our own behalf – that won us the support we got. I'm deeply grateful for the closeness of our family life.

On World Autism Day, I'd like to thank all the ASD adults from whom I've been able to glean insights over the years – I cannot over-emphasise how important that has been. Thanks to other parents like Hilary Stace, who pointed us in the right direction at vital times. Thanks to Matthew Dentith, Ben Wilson, James Burnett, Ashley Hinton and Karl von Randow, who saw what the system couldn't in our younger boy, Leo, and helped him harness his fierce intelligence. Thanks to the people at Rialto and the Bridgeway, who have provided Jimmy not just with work, but work that makes use of his creative expressiveness and his passion for film.

And thanks most of all to Jimmy and Leo, who have taught me things about difference and human nature that I could not have learned from anyone else. I'm a better journalist and a better human for that understanding.

12

Changing Shape

by Chelle Hope

From the moment my leg left my body, it became medical waste. It’s not even that anymore, I’m sure. It’s … What is it? My leg existed in space and time as part of me and what I understood myself to be and it is no longer there. Amputation has made me think about who I really am. It has been at once a challenging and life affirming experience. The amputation of my leg continues to affect my identity and how I think about myself.

I am an amputee now. There’s a word for it and everything. I have resisted joining any kind of support group, organisation, or society whose members are amputees and define themselves as such. I’ve never been much of a joiner and I’ve never been one for consolation. I’m sure these aspects of my personality make my life harder than it needs to be. I believe life should be hard. That is both a blessing and a curse. I never say, or even dare think, that life isn’t fair. Nobody ever promised it would be.

After my surgery, I felt something I wasn’t prepared for; I was immediately self-conscious. In the beginning, this was debilitating. I didn’t want to see many people post-op when I was in hospital. There were only a select few who I allowed into my room to begin with. I had a room to myself. When I got out of hospital, I found it hard to muster up the courage to go out anywhere. I stayed at my dad’s place for a few weeks and the idea of going home was entirely daunting because I knew I would have to go out and be seen by people and they would see that I only have one leg. I was perplexed as to why I should care. After all, how people see me had never bothered me before.

That I would feel weird and self-conscious about my stump is, even to me, absurd. People have always stared at me. They have always noticed my wheelchair. They have always said really stupid stuff, both well-meaning and out of cruelty. I was so used to that kind of attention, I had unconsciously trained myself to block out the vast majority of it. When I joined the world again after my surgery, for a long while I could not get past the idea that everyone was staring at me. So many people stare at me when I’m out and about and I notice them now because I’m looking for it. I realised after a while though, that I probably wasn’t getting much more attention than I’ve always had, it was just that I felt uncomfortable with my new identity as an amputee and I was projecting that onto the people around me who had always looked.

Before my amputation, I was scared all the time. I couldn’t do anything much because I didn’t have the energy for it or I was too sick or I was waiting to get sick and I was scared. I’m still trying to get used to the idea I might not have to be hooked up to life saving drugs in the near future, that I might not be a patient again for a while. The thing that I thought was going to kill me is gone. I am no longer chronically ill. That sentence, that thought, has just this second dawned on me. It’s all taking a lot to process. There’s so much involved. The good and the bad consequences of my amputation do not occur to me all at once and I still can’t answer simply when people ask me if I’m glad I did it.

I’m struggling to know what to do with my time now. I got used to being a patient quickly; mind you, I’d had a lot of experience in that area already. I’m still an occasional patient but it’s really not impacting on my life in a significant way. I’ve realised only recently how small my life is. Actually, I think I’ve been aware of the walls closing in for a long while but it matters more now because I have time on my hands that used to be taken up with being a patient and with being scared.

I think I can probably be more than a patient who has disabilities and chronic illness now. I’m tentatively testing the boundaries of what I’m capable of again. I used to do that a lot. It was how I lived my life. I achieved things I didn’t imagine I’d be capable of because I was happy to accept that life is hard and that if there’s a wall I had to find a way over or around it. The thought that I might be able to get back up over that wall again after so long is at once terrifying and exhilarating.

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This post is republished from Chelle Hope's personal blog, To Be Perfectly Honest ...