Access by Various artists

People say I’m brave when they see me in my wheelchair. That can be frustrating. I’m not brave just because I happen to have a disability. There are, however, instances in my life where I have had to find a great deal of courage from somewhere to get me through. This year I have made the most difficult decision I’ve ever had to face and, as a result, surgery for the amputation of my right leg is scheduled very shortly. You can call me brave now.

The idea that many have that it takes bravery and courage just to live in my body says a lot about how people still consider disability. Living with a disability is almost certainly many times less awful than people might imagine. If people were honest with themselves, I suspect that disability is scary to them because they don’t know how they would cope if it happened to them, and it so easily could.

I must now concede though, having thought about it, I may have brushed the label off too insistently and with too little thought as to what it really means to be brave. Certainly, I think it would be foolish of me not to accept that it has taken a lot of courage to get to where I am and that, for the foreseeable future, I will be required to be very brave indeed to get through the amputation. It is the most scared I’ve ever been. A person can be terrified and brave. That much I have learnt.

Electing to have my leg amputated on the back of 10 years of chronic wounds and infections has been a terrifying thing. It started out as a confusing thing for quite a while too as I tried to figure out what the ‘right answer’ was. If a decision is very difficult because you are trying to choose the right answer, it might just mean there isn’t one, so you have to go with what makes the most sense with the information you have. In that case, anything a person decides to do or not, is an act of bravery in the face of uncertainty.

My choices essentially came down to a decision between non-action or reaction. To do nothing would mean I would continue to suffer, I choose that word advisedly, from infections. Eventually, one of those infections would probably ‘get the better of me’, shall we say. Seems like an easy decision, when I put it that way.

The thing is though, when you’ve lived under certain conditions for long enough, even if the circumstances are far from ideal, there is comfort in certainty. Living, as I am, with the ever increasing risk of infection and the potential for sepsis looming large, chronic illness has become a new normal for me.

I hesitate to say, I’ve become comfortable with my circumstances to an extent. While my expectations for quality of life have become limited by circumstance, I largely know what to expect if I do nothing. While the decision to do nothing is a more comfortable position, so long as I don’t think about it too much, it is also a decision void of hope and with a limited future.

I have made the decision to have my right leg amputated. I am choosing to live in hope. I don’t know how things are going to turn out for me. I really don’t know what to expect but I am hopeful. I’m starting to think of a better future. I haven’t done that in 10 years. Yes, you can call me brave now.

UPDATE: Just to let everyone know: Chelle has had her amputation, and while she's been dealing with pain and discomfort in recent days, the surgical side of things seems to have gone very well. Let's all hope her recovery is swift. RB

In the latest census 24% of the population were identified as disabled, that is 1.1 million people New Zealanders. Many of those are older people with physical impairments, but for young people learning disability is the most common. Then there are all their families and carers and service providers. So you would think that political parties would be trying hard to court the votes of this valuable sector. Disability policy covers health, education, social development, ACC, housing, employment, transport, justice and human rights as well as other portfolio areas, with sometimes complex interactions.

Disabled People’s Organisations such as People First are actively encouraging their members to enrol and vote. But last week’s well attended election forum in Wellington on Disability Issues organised by five large disability organisations showed that several parties are not taking the sector seriously.

We have had two effective ministers for Disability Issues since that portfolio was established by Helen Clark’s government in 2000. Labour’s Ruth Dyson, and Tariana Turia from the Maori Party have both engaged well with the sector and had some significant policy changes. Ruth oversaw New Zealand’s contribution to the development and ratification of the United Nations Convention on the Rights of Persons with Disabilities, and among numerous wins on her watch were NZ Sign Language becoming an official language, and the closure of the last institution. Although outside Cabinet, Minister Turia established the new role of Disability Rights Commissioner in the Human Rights Commission and persuaded the government to fund monitoring of the Convention by disabled people’s organisations themselves.

A group of our disability representatives and government advisors are in Geneva this week discussing progress on implementing the Convention.

There is a lot of interest from the sector in disability policy and the future. In June the IHC identified New Zealander’s top election concerns as education, health, jobs, poverty and the gap between rich and poor. As these issues disproportionally affect people with intellectual disability and their families some of their members questioned the parties on their policies known by then.

But disability policy has only dribbled out, and some parties such Act and the Conservatives seem to have completely overlooked us. The new youth-run ours.co.nz website has a comprehensive list of party promises announced before 7 September. Policies are summarised under numerous headings and under Disability is the following:

Labour

• Ensure implementation of the United Nations Convention on the Rights of Persons with Disabilities, and adopt the Optional Protocol to the Convention
• Employ 100 additional special education teachers and comprehensively review the entire system of special needs support
• Provide free annual health checks for people with an intellectual disability.

Greens

• Implement recommendations of United Nations Convention on the Human Rights of Persons with Disabilities.
• Enact legislation similar to the U.K. Disability Discrimination Act to close existing loopholes in our legislation.
• Ensure all new houses and buildings fully comply with disability access requirements unless specifically exempted.
• Establish a Disability Issues Commission.
• Provide free, accessible advocacy services while supporting the right to self-advocate.
• No sterilisation of anyone under 18 unless necessary to save the person’s life.
• Ensure full information must be given where an abnormality is diagnosed before the family makes their decision on whether to proceed with the pregnancy or not.

NZ First

• Recognize that the disabled are best able to identify and articulate their own needs.
• Disability support services which are delivered after self-assessment and which facilitate physical and economic independence.
• Improve oversight of disability care.

• Improve support for unpaid carers.
• Ensure adequate funding and support for family home carers under ACC.
• Ensure infrastructure, transport and information are universally accessible.
• Review Child Disability Allowance with a view to increasing the rates.
• Ensure separate accommodation within rest homes for young disabled people.
• Change student/teacher ratio for vision impaired students from 1:35 to 1:15.
• Ensure objectives of NZ sign language legislation are fully carried out.
• Support an independent review of current audit and monitoring provisions.

Māori

• Establish a national Māori advocacy service.
• Extend individualised funding.
• Promote the Circle of Friends.
• Establish an annual Disability Employment Summit

United Future

• Establish community-based advocacy services to ensure that every disabled person and their family have a case manager.
• Support the development of “family governance groups” to oversee life-long care arrangements for individuals with disabilities.
• Commission an independent review of current audit and monitoring provisions for disability care providers.
• Promote a client-driven, rather than provider-driven, disability support sector.
• Develop standards for group housing that provide residents with a greater voice.
• Support home ownership for people with disabilities through state housing.

Since then Mana has put out a detailed policy based on rights, inclusion and with a focus on disabled Māori. Last week the Greens put out a special education policy promising to double the number of children who receive ORS, increased support for Early Intervention, after school funding, and a review of the whole area of special education. National has a new policy to create 800,000 more teacher aide hours. Last Friday came the news that Government, unions and providers had agreed to pay home support workers at least the minimum wage and mileage for their travel between clients from July next year.

Loren Corbett of the 20% campaign (named before the census increased the proportion to 24%) has scored the parties on their disability policies.

So last Thursday I joined about 150 others in Wellington to hear about Disability policies from the parties themselves. This meeting had been organised several weeks ago and was sponsored by IHC, CCSDisabilityAction, People First, DPA and the NZ Disability Support Network. Time keeping was strict via bell and flag. Here is video link.

There are protocols for engaging with this sector. Care needs to be taken with the language used (eg no ‘handicapped’), and to avoid being patronising or assuming disabled people’s lives are tragic or require fixing. Respect for the lived expertise members of this sector have is important, which means asking for more information and then taking the time to listen, if you do not know the answer.

The meeting started badly when Te Ururoa Flavell stated that the Māori party wants to repeal the NZ Public Health and Disability Amendment Act No 2 – the bill that was passed under urgency following the 2013 Budget and which denies the paid care option to many family members, and even worse removes any avenue for challenge under human rights legislation. Repeal is a popular policy – except that his Party voted for it and helped it pass. Which he then denied. And then he had to leave.

Other speakers then had their three minutes and questions. Green party MP Mojo Mathers, a sector friend and insider, was a favourite. Unfortunately, Ruth Dyson’s plane was stuck in fog in Christchurch, but Labour MP Chris Faafoi was a last minute replacement. He was already acquainted with some of the disabled people present – always good sign – and his background in Aged Care and Broadcasting meant he understood many of the issues (such as workforce development and captioning). Although he was not familiar with some specific questions, such as after school care for disabled children, he stayed around afterwards to find out more. Local candidate Hugh Barr stood in for NZ First’s Barbara Stewart, and could only read out policy. National had sent along list MP and local candidate Paul Foster-Bell. Not sure why. The Mana candidate agreed with everything questioners raised fitting them into encompassing Mana principles.

So overall the audience knew a lot more than the pollies. Had there been time these are the some of the questions I wanted to ask. None of them were answered at this meeting, but we can keep asking.

• How will you make schools welcoming and inclusive for all children and their families?
• How will you make the benefit system less demeaning and complex for those who need it including parents of disabled children trying to access the child disability allowance?
• Will you remove the minimum wage exemption?
• How will you encourage the development of real jobs and inclusive accessible workplaces?
• Will you repeal the NZPHD Amendment Act No 2Act which removes access to a complaints process on human rights for family carers and what will you replace it with?
• How will you ensure that all buildings, houses, businesses and cities are accessible for all?

• How will you reduce health disparities for disabled people including those with mental illness?

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!

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.

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!