Access by Various artists

I am at the United Nations disability rights convention conference in New York to engage in discussion and work with others to search for solutions to end the denial of disabled people’s rights. 

A major session at this meeting of the parties to the Disability Convention is about the drive to end the institutionalisation of children. The Lumos charity estimates that around eight million children are living in institutes and about as many as a quarter of these children are disabled. The damage caused in these institutes actually means many more children leave (if they do) damaged in some way.

Lumos was founded and funded by J.K. Rowling, author of the Harry Potter series. 

In 2004, after seeing an article in the Sunday Times about children being kept in caged beds in institutions, J.K. Rowling felt compelled to address this terrible problem.  As a result she founded the charity that became Lumos.

She said, "I looked at that photograph of the boy in his cage bed and felt he has absolutely no voice. This touched me as nothing else has because I can think of nobody more powerless than a child, perhaps with a mental or a physical disability, locked away from their family. It was a very shocking realisation to me and that's where the whole thing started.”

My daughters tell me the word “Lumos” is wizard Harry’s spell that shines a light from his wand into the darkness.  Lumos has succeeded in getting many thousands of children out of institutions in Eastern Europe. Some of these children will be telling their stories at the conference via video.

J K Rowling’s character Harry Potter is very different from the muggles (humans with no magic) he lives with, he is an orphan and he is most certainly not wanted by the muggle family, he has a special mark and has special abilities. The foster family are scared of him, he is bullied by their own child and is in fact locked under the stairs. Harry though of course has special talents and in the right environment of Hogwarts goes off to do luminous magic.

I wish Harry could cast a magic spell so that disabled children around the world who linger in institutions could be released, grow up in a home with loving people, to belong in a community, and to learn alongside neighbourhood friends at school.  These are rights enshrined in the disability convention.

At this conference session my fellow traveller to New York, Robert Martin will tell of his life growing up in New Zealand’s institutions.   He confirms these are places where the abuse of being coerced away from and deprived of the love of your family starts to destroy you; where no one comforts a small child who cries for their sister; where loneliness is dark, desperate and doesn’t abate. Robert experienced physical abuse and had his childhood innocence shattered. 

Robert is a New Zealander with a learning disability (we used to call that an intellectual disability).  By telling his story to the UN 10 years ago during the development of the disability rights convention he shone a light on the need to hear the voices and opinions of people whose rights have been trodden on.

After Robert’s appearances at the conference all those years ago some conference attendees observed a change in the bureaucratic UN environment.  Diplomats representing the assembled governments from around the world recognised in their hearts and minds the important voices in developing this covenant of international law are the voices of disabled people.  The diplomats then allowed these voices to lead the convention development, and the disability convention was agreed in faster time, and signed by more nations more quickly, than any other convention.   UN human rights conventions are covenants, the deepest of international legal commitments.

Harry Potter used his magic powers and powerful friends to enter into the world of wizards and escape his oppressive home.  Robert Martin projects this same resilience and story of survival that inspires us all with hope.  He inspires me as a fellow disabled person that we can shine our lights and share our magic in muggle dominated communities. 

Time and technology permitting, I’ll regularly blog over the course of the convention conference with updates.

Paul Gibson is Disability Rights Commissioner at  the Human Rights Commssion. He is sight-impaired.

I’m sick of being patronised and infantilised.  Often things are said in a jokey way and because it’s all in good fun, I feel like it would be humourless or mean of me to react negatively.  I doubt people even realise what they are doing or saying and I don’t want to hurt people’s feelings with my reaction. Much of the time people are trying to be nice and so I feel I have to go along with their wee 'joke'.

When these interactions occur, I am left feeling angry, hurt and frustrated.  Ultimately, I feel powerless to do anything about it.

When people I don’t know comment on the chocolate I bought, or the bottle of wine or, God forbid, a packet of cigarettes, saying something like, “Ooh, you don’t have chocolate in that basket, do you?” or, “That’s not wine, is it?” said in a tone reserved only for naughty children, I smile and get out of there with as much dignity as I can escape with.

For the record, I don't drink or smoke anymore.  I had to give up both for health reasons and I still yearn for the days when I was young enough to get away with such 'bad behaviour'.  I don't miss the attention I got for purchasing such grown up items, though.  It is humiliating and embarrassing to be treated like a naughty school kid for doing stuff that so many other adults get to do without question.

Sure, it’s a joke.  Perhaps I should have more of a sense of humour about it.  Well, most of the time I do.  Sometimes though, I just don’t feel like being complicit in my own humiliation.  Sometimes all I want is not to be noticed.

That’s not possible though.  My wheelchair seems to be an open invitation to treat me like a child, or worse, a moron.  I would like, really, just to be treated like everybody else.  Would an able-bodied person ever be treated in the same way?  I suspect not.  Certainly nobody I’ve spoken to about this gets subjected to the same routine and, without exception, people expressed surprise that this was a regular occurrence for me.

As soon as the story broke that PM John Key had been playing a game of ‘tug the ponytail on the waitress’ at his local café a while ago, I understood completely what it felt like to be the woman at the centre of it all.  This was no game, this was a joke at someone else's expense.  It was just a bit of fun, that’s true, but not for everyone concerned.

When I was a child, adults used to ruffle my hair in a good natured way, as adults have been doing to children forever.  As a child you don’t really think about it.  You smile and carry on.  Well, I’m nearly 35 and it’s still happening.  I still get people ruffling and messing up my hair in the same way that they did when I was five.  Yeah, I’ve definitely lost my sense of humour when it comes to being treated like a child.

Don't get me wrong, I love a good joke and I adore comedy.  I wouldn't say I'm that easy to offend, either.  Unless someone is using humour to bully or incite hatred of an individual or group, I'll almost always be on the side of comedy.  Unfortunately, there are plenty of examples out there of comedians who do laugh at, bully and incite hatred of groups and individuals.  Intelligence, nuance and layers of understanding are nowhere to be found in this brand of what might loosely be termed humour.  Irony is dead to these people, and so is their comedy.

I laugh all the time at myself and the jokes I make about my disability have been brutal enough to make grown men cringe in horror.  Those who know me well are in on the joke and we laugh together.  We share a history and the people who I’m lucky enough to know and love understand what it is to live with disability.

If I'm not laughing at some apparently clever jibe, or quip, or witty comment you've made, or I don’t look pleased that you’ve invaded my personal space, you're not sharing a joke, you are making a joke at my expense.  You are laughing at me and the joke is wearing thin.

Minister of Finance, Bill English, has hinted that there will be a voucher system for disability support in the Budget on 21 May. This will be the Government’s latest attempt to fix disability policy. However, as various posts on this Access blog have detailed, the track record of governments in providing equitable and appropriate disability services and support is not good.

This is because disability is an example of ‘wicked’ policy, a problem which is not bad, merely resistant to simple solution. This concept has been around since the 1970s but in 2007 the Australian Public Service Commission (APSC) published a simple analysis of wicked problems to help understand problems such as climate change and family violence. In this post I use autism as an example of wicked policy, but much of it applies to disability generally. The quotes in the following are from the APSC 2007 report.

According to the APSC, ‘wicked’ problems:

• Are difficult to clearly define
• Have many interdependencies and are often multi-causal
• When tackled can result in unforeseen consequences
• Are often not stable
• Usually have no clear solution
• Are socially complex
• Rarely fit conveniently within the responsibility of any one organisation
• Involve changing behaviours
• Can be characterised by chronic policy failure.

I will go through these one by one providing examples from autism.

Wicked problems are difficult to clearly define

‘Different stakeholders have different versions of what the problem is. Often, each version of the policy problem has an element of truth’.

Autism itself largely defies definition. In most cases it is unable to be confirmed by biomedical testing. There are various, often contradictory, diagnostic tools. The spectrum is growing wider as diagnostic descriptions evolve. There is disagreement about what has caused the increase in diagnoses over the last few decades: environmental factors, better knowledge or social construction of a condition? Where, how and why might interventions or support be required? Whose role is it to provide them?

Wicked problems have many interdependencies and are often multi-causal

‘There are also often internally conflicting goals or objectives within the broader wicked problem.’

This is another way of saying they are very complex, and there is no linear path from a single cause of a problem to one logical solution. With autism we also have the combined problems of insufficient data and diagnostic capacity, as well as an apparent increase in numbers of people with the condition, but a service delivery system that is conflicted between treating people as holistic beings, and tightly capped budgets. No two autistic people are the same and problems vary between individuals and over time.

Attempts to address wicked problems often lead to unforeseen consequences

An attempt to address wicked problems leading to unforeseen consequences is illustrated by the 1990s educational policy of Special Education 2000. This policy was intended to encourage the mainstreaming – integration of children with special educational needs including autism – into regular schools and out of the units and special schools in which many were receiving their education. SE2000 was in the spirit of Section 8 of the 1989 Education Act which provided the right for every child to attend their local school. SE2000 anticipated that every local school would accommodate all the local children in all their diversity, and was also intended to address regional inequities.

However, the decision to provide targeted funding for only 1% of students through the Ongoing Resourcing or ORS Scheme, proved highly inadequate. In implementing the policy, insufficient classroom support was provided for many mainstreamed children and their teachers. SE 2000 was eventually challenged by political and legal action. The Government is now into its 4th major review of special education since then, with little indication that the problems of autism and special education are being solved.

Wicked problems are often not stable

‘Policy makers have to focus on a moving target.’

Autism knowledge and the political and economic backdrop are constantly changing, so the policy solutions suggested in one context may be too expensive or outdated when the time comes for implementation. As children with autism grow into autistic adults the way autism manifests can change, as do support needs. Some children who appear highly autistic as pre-schoolers may have only minor impairment as adults. However, mental health issues may have developed for them. Employment rather than educational support is what they now require. Definitions change with each new edition of the DSM.

Wicked problems usually have no clear solution

There is no shared agreement in the autism sector on what an endpoint would look like and ideas in the literature and on websites range from the elimination of autism to a society led by autistic people. Dana Lee Baker (2011) from Washington State University notes that the ‘taxonomy of agendas’ shaping policy: 'cause, care, cure and celebration' clash over autism policy and priorities.

Wicked problems are socially complex

‘It is a key conclusion of the literature around wicked problems that the social complexity of wicked problems, rather than their technical complexity, overwhelms most problem-solving and project management approaches.’

Policy is about people and relationships. Problems are not easy to break down into simple cause and effect, but may involve changing and improving a variety of relationships, environments, attitudes and behaviours. There are some public servants – ‘vision-holders’ as they have been called ‒ who do try to engage a variety of stakeholders, for example in autism advisory groups, but they are rare. Our public service and agency contracting systems do not encourage such relationship building. Time and funding constraints act against it.

US systems and wicked policy theorist, Jeffery Conklin (2005) talks about ‘collective intelligence’ which is a ‘natural enabler of collaboration’ but is challenged by the ‘forces of fragmentation’ which doom projects. Fragmentation can happen when groups have to compete against each other for funding, or when communication is poor. These are both features of the New Zealand autism community which has numerous different autism-related organisations. 

Wicked problems rarely fit conveniently within the responsibility of any one organisation

Several government departments, ministries and agencies have disability (including autism) responsibilities including Health, Education, Social Development, ACC, Justice, Housing, MoBIE. Numerous community organisations hold autism-related contracts. But they don’t seem to talk to each other. Navigating between them can be endlessly frustrating for disabled people and families.

Wicked problems involve changing behaviours

‘Innovative personalised approaches are likely to be necessary to motivate individuals to actively cooperate in achieving sustained behavioural change.’

An autistic child’s behaviours can often be mistaken for naughtiness, and an individual child’s abilities can range high and low across IQ scales and educational assessment. To address the needs of each student with autism, schools have to change their attitudes, even altering their physical environment to provide less sensory stimulation. Teachers have to learn new techniques. Agencies providing autism support need to work across boundaries to better coordinate services. People working in autism services and support may need to review their own attitudes, ethics and behaviours around both collaboration and respecting the lived expertise of autistic people (and their families).

Some wicked problems are characterised by chronic policy failure

Disability generally has had decades of policy attention in New Zealand, yet disabled people still feature highly in the statistics of disadvantage such as health, education, employment and income. Autism has had almost two decades of specific policy focus since a mother killed her autistic daughter. Yet social media forums reveal continuing unmet need around autism, including coordination pathways, respite, behaviour, education and employment support, independent living, and other services.

Conklin paraphrases Horst Rittel, one of the founders of this way of looking at problems:

• You don’t understand the problem until you have developed a solution
• Wicked problems have no stopping rule (no definitive ‘the problem’, no ‘the solution’)

• Solutions to wicked problems are not right or wrong. They are simply ‘better,’ ‘worse’, good enough’ or ‘not good enough’
• Every wicked problem is essentially unique and novel
• Every solution to a wicked problem is a ‘one-shot operation’ (very attempt has unintended consequences)
• Wicked problems have no given alternative solutions ( not either, or but about being creative and exercising good judgement)

Considering this analysis of wicked problems what can be done about it regarding autism?

We could start by rethinking notions of expertise. Who are the experts? I suggest this hierarchy:

• People with autism
• Family/whānau members/carers
• Professionals/clinicians/ teachers/teacher aides/carer (and the closer to the autistic child the less the status and pay)
• NGOs and community groups
• Public servants/academics
• Politicians

People with autism need to be at the top of the hierarchy so that their lived experience is respected. Bringing them and their families into the process is a start, but not in a token way.

We need to build ‘right’ relationships between all those with an interest in autism policy. It needs to be done with the resources of the State and by its agents. A politician tossing out a voucher on the off chance there is an appropriate local service, is not the way.

Wicked problems are different from linear problems that fit a model of problem, analysis, solution. They are messy, cyclic, all over the place, and you need to grasp at solutions to even begin to understand what the problem is. But what I like about wickedness is that it gives you the opportunity to take risks, to be innovative and build relationships with groups who hold the wisdom but haven’t been asked before. It might not work smoothly, and there might be conflict, but there might also be good results. As Conklin says ‘include all the stakeholders, and let the group explore the problem and solution spaces to get broadest and deepest ownership’.

Autism is just one aspect of disability policy that could be considered wicked. Look at all the disability expertise and wisdom in the posts and comments on this Access blog. Yet how many of us or our disabled friends are asked to advise on government policy? I suspect not many and not often. So without including this expertise and without an understanding of the wickedness of disability policy any new policies are bound to fail, just like the Funded Family Care policy of two Budgets ago.

Bill English, are you listening?

My visit to the exhibition Road to Recovery: Disabled Soldiers of World War I at Te Papa was almost my only observance of Anzac Day. The exhibition has been there for a while, and certainly wasn’t attracting the crowds that queued for the main exhibition to open when I arrived for a morning meeting. Quietly tucked away in a very small gallery and easily missed, it mirrors the situation of the men it features.

The optimistically-titled exhibition features eight photographs of men injured in World War I. “The limbies”, as they were called, were men who had lost limbs as a result of gas gangrene. All but one of the men are nameless. There were many limbies during the war. They are shown in the exhibition at a rehabilitation facility for New Zealand soldiers in the UK where they are learning trades to help them return to civilian life and earn a living.

I looked into the angry eyes of a young war-hardened man and felt deep sadness. I wondered what happened to them after their rehabilitation, how did they adapt to their status as disabled veterans? These anonymous men are the disquieting faces of war.

They are not the mourned dead soldiers. They are not the returning victors. None of them smiles for the camera. There were more than the “limbies” of this exhibition. Others were gassed, deafened and blinded. Then there were the “shell-shocked” men, those who bore no visible scars but who struggled to settle into regular life again: the swaggies, the drunks, haunted men who couldn’t hold down a job for any length of time. Those with visible scars of war did, and still do, receive better support from the State that sent them off to war.

I remember some of those older men from my childhood. The farmer with the old-fashioned wooden leg, our tough but kind old cowman gardener who wouldn’t talk about the war or attend Anzac Day parades. I also remember his predecessors – two alcoholic veterans who were almost always too drunk or hungover to work. Post-Traumatic Stress Disorder (PTSD) hadn’t been discovered then.

Since then, injured men have returned from World War II, Korea and Vietnam, the cause célèbre of my generation. Then there was Afghanistan, and we are about to do it all again. These men, especially those with PTSD, are still the uncomfortable faces of war that many people would prefer not to confront. They remind us that war isn’t over with the last shot fired, the lost bomb dropped, the last burial. It can’t just be left behind on someone else’s soil.

The maimed and damaged soldiers induce unresolved unease. They are given titular status from having served their country in war, but in reality they experience the same deep-seated disableism and prejudice rampant in modern western society and experienced by all disabled people.   

Their history, unlike the dead and the victors’, is part of a hidden and largely unacknowledged history in New Zealand. There is food for thought in this small, sad, and anonymous exhibition. It raises more questions than it answers.

Ironically, as a vision impaired person, I was unable to access all the written material and labels accompanying the exhibition.

I didn’t hear The Band played Waltzing Matilda on Anzac Day this year. But I will remember them.

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So they gathered the crippled, the wounded, the maimed, and they shipped us back home to Australia.

The legless, the armless, the blind, the insane, those proud wounded heroes of Suvla

And as our ship pulled into Circular Quay, I looked at the place where me legs used to be.

And thanked Christ there was nobody waiting for me, to grieve, to mourn, and to pity.

But the band played Waltzing Matilda, as they carried us down the gangway.

But nobody cheered, they just stood and stared, then they turned all their faces away

Eric Bogle, 'The Band played Waltzing Matilda'

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 21^st 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.