Access by Various artists


A touching story

by Fiona McKenzie

I’ve just hung up the phone from a courtesy call the guy probably really really regrets making. 

He was calling from the company which has won the contract to transport our daughter Claudia, who has special needs, to and from school.

Yes, there was a terrible day at the beginning of this year when we heard the our transport provider had lost the contract from Term 2 this year – and that meant we lose Trevor! 

Our wonderful Trevor, who picks up and delivers Claudia with such good humour and friendliness. Who listens to Bowie and The Beatles and rocks it out with the guys en route.

Trevor, who with his enormous heart came to our place in the holidays and drove Claudia to her holiday programme each day because I had a fractured ankle and couldn’t do it. 

And who refused even a bottle of wine as thanks, because he’s just a good person. A really, really good person, ranking up there with Nigel in Claudia’s estimation. And mine. 

So next term we won’t have Trevor. 

Because of an unexplained Ministry of Education decision we’ll have a different van with a different logo and and a different driver. I’m sure the driver will be super-nice and well qualified and that we’ll all get used to the change. 

But hidden in page 3 of the extensive letter explaining the change was a little list of “what our drivers won’t do”. And that includes “touch the students”.

No touching. That means No Touching. At All. 

As a parent I say “What The Hell Sort Of Stupid Rule Is That You Wankers!?”

Because here’s the thing. 

Claudia will do anything for Trevor. She won’t for me.

Claudia has learnt to get in and out of the van – because Trevor has taught her. 

She does it for him because it’s his van. His van and his rules and his experience and knowledge that allows him to trust that she is quite capable of putting her foot here. 

And then there. And of holding this handle like this. And hoisting herself up like that. And then putting her other foot here. And her bag here. Like this. And then he puts her seatbelt on for her. 

That’s important. It’s not me doing things for her. It’s another person helping her and her letting them. And her learning skills from people who have skills I don’t have.

And it all increases her independence because she leaves me at the door and takes herself and her stuff  to Trevor and his van and his support and his care. 

Look, I understand there was a terrible case of driver abuse of a disabled student that rocked every parent who has to trust other people to transport our vulnerable children. 

I get that there has to be some resulting change or remedy to prevent any possibility of that happening again. 

But this blanket ban is an ill-conceived knee jerk reaction from Ministry officials who I frankly doubt have ever seen one of these vans and jumped in for the ride. 

Because these are not just nameless faceless taxi drivers who transport people to and fro. 

This is an extremely important part of Claudia's day, not just something that happens between other things. Driving with Trevor is a twice daily is an important thing in itself

The journey is a part of her routine and if you don’t think her time spent with Trevor is just as critical to her life and her opportunity for interaction and learning – yes learning – then think again Ministry! 

And if you think you can stop someone like Claudia rushing to welcome Trevor, or leaning on him adoringly to say goodbye twice a day after their regular journey together then think again, Ministry!

And what do you propose those drivers now have to do to protect themselves from her perfectly normal human interaction? Flinch? Is someone going to move away from Claudia if she gets too close? Because that will only make her chase them more. 

And what of me? Do I now have to schlep out onto the street to coax Claudia into the van to the amusement of the neighbours?

Will she get into the van willingly for me? No She Will Not. 

She will keep grabbing me and asking questions of me about what might happen later in the day or who’s coming or what time – things she never EVER hassles Trevor about – because why would she? 

And do I now have to hoist myself right into the van to put on her safety belt? 

And how could I have done any of this when I was on crutches? If I end up in plaster again (PLEASE NO!) will she just not be able to go to school? Or would I have to pay someone to come around to our house for the sole purpose of putting her in the van while the driver stands by? 

This affects thousands of students every day.

It’s a nonsense, an affront to common sense and an insult to the role these drivers have in our lives.

Twice a day, five days a week Claudia gets to ride in a van with Trevor. 

She loves driving. She loves routine. She loves Trevor. 

Just ask Claudia who her favourite people are. 

If the statement that drivers are not allowed to touch the students was intended to reassure parents that drivers would not abuse our children it hasn’t. 

It’s added more stress. 

We should have assurances about driver credentials and checks, about the new cameras in vans, and that should be enough. 

No-one asked our family about any of it. No-one asked how we would like to be better protected from potential abuse. No-one asked if any of these proposed new regulations would affect us. 

I’m sick of having things done to us in the name of our own good. 

And the bus company who shrugs and says it’s Ministry policy should be back at the Ministry advocating for us when we don’t get access to the Ministry like they do.

And all of these people should remember who they are supposed to be serving and how their job only actually exists because of people like Claudia and is what they’re doing really best for her? Really? 


Hey Ministry of Education! Do you even know people like Claudia? 

Fiona McKenzie blogs at My Perils of Wisdom.


Disability and International Women’s Day

by Chelle Hope

I cannot begin to think about International Women’s Day, or indeed the experience of being a woman, without first acknowledging the role that disability plays in my life. I am a woman with a disability, a disabled woman.

Both identities have been difficult for me to embrace and even to accept at different times in my life. I never felt like I fitted in with other kids who had disabilities. They all seemed so at one with who they were. I felt like I had to fight against being disabled because of what I thought having a disability meant. It was a negative thing to me. I had been through a lot of painful surgeries, many of which were traumatic. I also had feedback from adults who would try to give me money on the street, as a way to lessen my burden, I suppose. Or they’d tell me how sorry they felt for me. I didn’t see that having a disability was in any way a positive thing.

Being a girl and a woman has never been easy for me either. I have been what in contemporary vernacular is referred to as ‘gender non-conforming’ since I was a child and I knew I was a lesbian before I became a teenager. Before I had any control over what I wore or how I might present myself, I would fantasise about getting my hair cut off into a neat buzzcut and wearing well tailored suits. Of course, in my fantasy, I was standing. A strong, tall and confident man in a business suit working with equally important people. If I were a handsome, besuited, white, able-bodied, heterosexual man, I could be important and successful.

Integrating my disability and being a woman into my identity and sense of self has been a hard fought and ultimately rewarding experience. I happily identify now as a woman with a disability, though neither way of identifying myself has ceased to be unproblematic.

Being a woman with a disability meant always wondering just how much harder I was going to have to try, to reach the level of my peers. It meant watching those same peers get ahead on an upward trajectory that I fell off over a decade ago. It has meant realising after I had tried and tried and tried, that I was never going to be able to work hard enough or be good enough anyway. I have to recalibrate my self-worth and my definition of success all the damn time. Eventually I realised on my own that none of this is my fault. All the cards were stacked against me.

The most insidious message women with disabilities are taught from a young age is that we have to be better than everyone else to succeed. This is a not-too-subtle reframing that places the responsibility on us as women with disabilities for the problems that society has in accepting us for who we are. I have very nearly died on several occasions because I thought if I just tried hard enough, I’d ‘get there’. I just had to stop trying to succeed on society’s terms in the end because it really was going to kill me. I mean that quite literally. Something has had to change in order for me to stay alive and since society wasn’t going to in a big hurry, I’ve had to.

I applied for so many jobs when I graduated and in the years following. Many of these were jobs in the disability sector. Not only was I well qualified for the positions but I also had what I know to be valuable insight into what it actually means to live with a disability and the skills to apply that experience to the work I might have been asked to do, if I’d only been given a chance.

I’ve been on the other end of a phone call from a woman who wanted to give me a job in the intersecting disability and education sectors. She had to explain to me that the two men on a panel of three had decided to award the job to a young able-bodied white man who personified exactly the person I had fantasised myself as being when I was a child. She offered congratulations and implied that it was progress that I had got so far.

That was the first full-time job I ever applied for, back when my health was not a mitigating factor in my ability to work. I sometimes wonder if I’d had a job back then, whether my health might be better now. It’s not worth pondering for too long. I had several other job interviews in my 20s for similar positions. I came second in all of them. I changed my strategy, I lowered my expectations, I embarked on further study. Nothing worked. Then my health started to fail. My turn was over and I wouldn’t get another one, I couldn’t play anymore.

Having tried over many years to find work and having worked in a number of part-time and voluntary positions, I set my sights this year on a teacher aide job. I’ve had some schools say they will get back to me if something comes up. I really hope they do. I do wonder how many schools I’ve sent my CV to have since given jobs to able bodied people that could have been very capably done by me. I can never know this of course. Discrimination is much more tricksy these days than it ever was. People have learnt that it is not ok to discriminate, so they are much more clever about it. Now, we all know it’s happening but it is done behind closed doors and out of earshot of anyone who might be able to corroborate our stories and experiences.

Being a woman with a disability is exhausting.

How great would it be to have more women with disabilities working with youth, mentoring them, making it known that we can help each other? I say women here because in my youth, I remember very few women who were put forward as role models and mentors for young girls and boys with disabilities. If we saw anybody at all with disabilities as public figures, they tended to be young disabled men who had the same focus on physical fitness and sporting prowess as the able-bodied men who were offered up as our most valued role models and representatives of national pride. I don’t believe much has changed.

I want to live in a world where a young girl with a disability can realistically aspire to be a successful woman with a disability, on her own terms. Being a woman with a disability means loving myself for who I am and not what society wants me to be but will never let me be.

Chelle Hope blogs at To be Perfectly Honest ...


Privacy and the right to consent are all some people have left. But not for long.

by Hilary Stace

Community organisations funded by the Ministry of Social Development under the Government’s Social Investment Strategy will soon have to hand over detailed identifiable information about their clients to the Government to get funding. This shockingly unethical policy was revealed by veteran NZ Herald journalist Simon Collins in October last year, but it has taken some time to be noticed more widely.

I was so horrified by the contravention of basic ethical principles of informed consent, confidentiality and the promotion of coercion that I spoke about it at January’s NZ Bioethics Conference in Dunedin. So I am pleased it is now being investigated by the Privacy Commissioner, and the community sector is fighting back

So-called ‘big data’ is fashionable and many are excited at the potential of these massive quantities of data for understanding and answering complex policy questions. However, big data is also a political tool which can be manipulated by those who fund or have access to it. Much has been written about Cambridge Analytica’s success in constructing a profile of each US voter in order to identify, target and encourage every Trump vote. Big data is not benign so we really shouldn’t be surprised that our current Government is also using it to implement a political ideology.

The Social Investment Strategy has been championed by PM Bill English. The theory is that with big datasets you can identify who is ‘vulnerable’ (which can also be code for a lot of other things such as being poor, brown or powerless) and you invest targeted resources in them so they improve their own lives and stop being vulnerable.

The Ministry of Social Development website describes the role of its Community Investment Strategy in implementing the policy:

The Ministry of Social Development invests over $300 million in community-based social services each year. These services help support our most vulnerable children, young people and adults to be safe, strong and independent. The Community Investment Strategy … helps ensure that these services are targeted at the right people and the right communities, based on evidence of what works…A social investment approach is about providing up-front investment to support people most at risk of poor outcomes later on in life. We will use the technology and data available to help us understand the people who rely on the programmes and services we invest in.

One of six key elements of the approach is: Improving the quality of data collection ‒ including individual client level data collection.

The State funds more than 800 approved community organisations to provide certain services through the MSD’s $330 million Community Investment fund. These organisations include women’s refuges, counselling services and budgeting agencies. Under new contracts which come into effect in July the Government will require these community organisations to hand over personal client information to the Government to get funding to provide those services.

These personal details include each client's name, address, date of birth, gender, ethnicity, iwi, country of birth, number of dependent children, birth date of the youngest dependant, and details about the service they receive.

Clients who refuse written consent or service providers who do not provide the personal information of clients to Government will be penalised by the removal of funding.

The data will be initially "anonymised" – which as ethicists know does not protect anonymity ‒ but from July this year will identify individuals. The data will be used to track the outcomes of services for individuals – i.e., become part of bigger Government databases – although how collecting the data will answer any useful questions is unclear.

This move is of course a concern for many who work with already marginalised people, as it will undermine people's trust in non-government agencies. There are fears that some of the most vulnerable people, such as those leaving violent relationships, with disabled children or in financial need may be scared off seeking help in case their disclosures are used to take their children from them or stop their benefits. Privacy and the right to consent are all some people have left.

Guidelines for the new contracts say agencies can still voluntarily help people who do not consent to share their details with the Government, but the organisations will not get funding for those clients.

This policy also compromises every agency and every professional who will now not be able to provide a confidential service. Commitments to confidentiality, which are part of many professions’ codes of ethics, will have to be overlooked.

Ethically, this whole policy sets off alarm bells. Informed consent, a basic ethical principle which can be traced back to the Nuremberg Trials, is being flouted by our Government for some mythical, magical benefits from ‘big data’. It is part of the bigger principle of respect:

  • Research should respect persons and populations. This means informed and ongoing consent, consultation, cultural awareness and safety.

For an individual to give valid informed consent, three components must be present: disclosure, capacity and voluntariness.

  • Voluntariness refers to the subject’s right to freely exercise his/her decision making without being subjected to external pressure such as coercion, manipulation, or undue influence. (According to Wikipedia)

This new policy is surely coercion. Give your personal identifiable information to the Government – or no service.

As well as the breaches of confidentiality and informed consent, there is concern that the new policy amounts to surveillance. This is a powerful tool to keep the citizens in check and there are valid concerns that some people with major issues won’t come forward because that information could be used against them by Government.

Fortunately then (from October 2016):

The Government has denied that requiring community agencies to hand over data about their clients amounts to "surveillance". Associate Social Development Minister Jo Goodhew says community agencies such as women's refuges and budgeting agencies will only have to share specified "client-level data" with the Government as a condition for funding from next July.

"The collection of individual client-level data is most definitely not 'surveillance' in any way," she said."Only the client-level data that has been included in the contracts will be shared with Government. All providers will obtain consent from clients to do so. When obtaining written consent the providers will be able to assure clients that no wider detail will be passed on… Any fears about the security of this data are unfounded."

However, Green MP Jan Logie is concerned at this shocking new policy, and in the same article said:

"The independence of the community sector is a strength, and to undermine that independence is a mistake. When people turn for help from community groups, they expect help, not a Government investigation of every aspect of their life. When Government privacy issues have proven time and time again to not be reliable or value personal privacy, it is hardly surprising that there would be suspicion of handing over further data."

Many of us remember when a former Minister of Social Development used confidential welfare data to attack two single mothers who had criticised her. Shrinking attention to ethics by many political leaders is a concern. With cross-matching between databases, and the possibility of hacking, individual privacy and confidentiality needs more attention, not less.

The current enthusiasm for the use of big data to somehow fix vulnerable people is misplaced and instead continues their oppression. The new contracts required by community organisations under the Community Investment approach ethically compromise clients, professionals and agencies – and all of us who let such things happen are complicit. We need to take back our citizenship rights.



by Chelle Hope

The tweets that are retweeted into my timeline are mostly either Trump-related or are aggressively cute images to counteract the Trump effect. As I was scrolling through the emotional rollercoaster that is now Twitter, terrified at the implications of a man clueless to the intricacies of the balances of power in the US – he may be the world’s first accidental autocrat – I smiled.

I couldn’t help it. The grinning face of Keah Brown (@Keah_Maria), creator of #DisabledAndCute, is just so gosh darned cute.

In mainstream media, the representation of people with disabilities has been overwhelmingly white, male and straight. The first thing I noticed about #DisabledAndCute is that it is so diverse. There is a vast range of people with disabilities represented, including people with disabilities who are not readily recognisable as such from an image.

Intersectionality has also been at the forefront of representation in this project from the beginning. I don’t remember the last time I saw a hashtag representing a group with such a wide range of intersecting identities, from race and gender, to sexuality and body shape. The visuals are all stunning and each one tells a story completely different and yet with an underlying shared narrative; we are all cute, whatever that means to each of us. We all have a right to see ourselves as cute, regardless of how others might perceive us.

There has been some criticism, as I figured there would be, from people who believe the hashtag to be infantilising and patronising. Worse still, there are those who believe #DisabledAndCute to be a form of what is known as ‘inspiration porn’, which is where able bodied people view people with disabilities, particularly through images and often with inspiring text attached, as inspiration for their own lives. A typical example is something like: “The only disability is a bad attitude,” which is often accompanied by an image of a person who very obviously has a disability, in a triumphant pose, preferably at the top of a hill or mountain.

It depends on how it’s framed. If you view #DisabledAndCute as a project aimed at able-bodied people, with a didactic focus, then the word ‘cute’ might take on quite a different meaning. But Keah Brown created the hashtag as a means of celebration, to acknowledge that her self esteem could be and is connected to feeling good about how she looks, despite the messages she and others with disabilities might receive from the world. It is a refreshing counter-narrative to a media still downright hostile to the idea that people with disabilities can look great and celebrate how they look.

A robust dialogue on the issue of representation, from within the disability community, is important. There is also a propensity to shut down certain narratives before they have a chance to develop nuance and complexity. We need diverse narratives and voices to share wide ranging experiences of disability. We don’t all think the same. If an idea is overwhelmingly positive for a lot of people who have disabilities and there are some who don’t like it, they have every right to say so, though sometimes it might be better to say, “It’s not for me,” and move on.

When I went to post my own pics to #DisabledAndCute, quite soon after it was created, I first posted an image of my face, cropped. I am no stranger to posting selfies to Twitter. I must admit I don’t need a hashtag to boost my own self esteem. As I thought more about the importance of visibility and everything that might mean, I decided to post another couple of wider shots that included my wheelchair and amputated leg. Those in the know would be able to tell from my short stature that I live with spina bifida. As a bit of a media studies nerd, I was fascinated by the idea that with #DisabledAndCute we get to decide how to frame ourselves. We decide what’s cute. We decide how much of ourselves to include in the frame.

Since I started following and engaging with #DisabledAndCute, I’ve been thinking much more about the space that social media allows us to tell our own stories and shape our own narratives. That ‘space’ is problematic and complicated because there is always a tension between us and our motivations and desires and the demand from able bodied people that we educate them on every aspect of our lives.

Since I saw the very first #DisabledAndCute image, from Keah Brown herself, it has felt like this is for ‘us’ – people with disabilities. Naturally, a lot of people who don’t have disabilities have viewed and will continue to seek out or stumble upon the hashtag. If they learn something or their perceptions and preconceived notions are altered, that’s wonderful. #DisabledAndCute centres people with disabilities, with everyone else made spectator. We control the narrative.


Murder – it’s not OK.

by Hilary Stace

On 14 July 1997, in a provincial New Zealand town, a mother killed her 17-year-old autistic daughter, Casey Albury. Suddenly the spotlight was on autism as a policy problem in New Zealand. At that time autism was considered a rare and unusual condition, and if people had heard about it, it was probably because of the 1988 Oscar award-winning movie Rain man. Casey’s mother's trial, and eventual sentence, was a popular media story.  

As the New Zealand story developed, a picture emerged of fragmented and inadequate services and of an exhausted, stressed parent unable to cope with the behaviour of her much-loved autistic daughter. The teenager spent most of her time at Hohepa, a residential facility for disabled people with complex needs, but at the time was home with her family. During a moment of crisis, she was strangled and drowned by her mother. The following year her mother, Janine, was sentenced to four years for manslaughter, but this was reduced after a public outcry.

For autism in New Zealand, the incident was a defining moment as the publicity generated was a catalyst for policy action. The public reaction to the killing forced political attention to this new policy problem of ASD. The Minister of Health, one Bill English, called for information and action, and was surprised by how extensive the problems appeared to be.

An interdepartmental report into ASD services was produced by the Ministry of Health’s David Curry, and Professor John Werry, an Auckland child psychiatrist, undertook an official investigation. Early in his report Professor Werry commented on the importance of parental expertise. He wrote, “If 30 years in medicine and child and adolescent psychiatry has taught me anything, it is that when a parent tells you they think there is something wrong with their child, you had better listen to what they say because they are often right.”

At first it was not clear whether the death of Casey Albury was an isolated incident or indicative of a larger problem, but soon feedback from parents and professionals, surveys and research, confirmed extensive problems around support for people with autism and their families, and many gaps in service provision.

A decade of work began which resulted in the launch at Parliament on World Autism Day, 2 April 2008, of the New Zealand ASD guideline, with hundreds of recommendations based on international best practice of the time for autism. The Guideline acknowledges Casey’s death as the start of the process of reforming ASD services in New Zealand. The bottom line was that there had to be massive improvements so that no other people with autism would be killed.

The reporting around Casey’s death focussed on the burden of caring for someone with high needs, and there was much public sympathy for her mother. The personhood of Casey, as a young woman with her own interests, such as playing the piano, was largely ignored.

A few years later a Nelson father suffocated his baby daughter after learning she had complex impairments. He was acquitted despite complaints from the disability rights movement that this placed a lower value on the lives of disabled people than for other humans.

Last April a Blenheim mother’s short memoir of her life with her disabled adult daughter was published revealing years of severe distress including mutual violence. Donella Knox and her daughter Ruby had previously featured in the media. A month later the mother was arrested for the murder of her daughter with an overdose of medication and suffocation.

In early February this year suppression was finally lifted and the second documented New Zealand filicide of an autistic daughter by her mother hit the media. Reports mentioned the exhaustion and sleep-deprivation of a devoted mother, portrayed her daughter as a complex set of medical, physical and behavioural conditions and suggested it was a ‘mercy killing’ for Ruby. In response local autistic advocates  sought a longer sentence. Meanwhile Donella Knox accepted her punishment and rejected a social media campaign to reduce her four year prison term.

Unfortunately, filicide is not uncommon in the world of autism. The US-based Autistic Self Advocacy Network has named 1st March as a community day of mourning to remember disabled victims of filicide. They have recorded more than 400 instances of parents, family members or caregivers killing their disabled children, most of whom have autism. They have now developed an anti-filicide toolkit resource, and, a memorial to the people with disabilities who were victims of filicide.

From their website:

We see the same pattern repeating over and over again. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the ‘burden’ of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats.

This is not a new phenomenon. The Nazi killings started because a father asked the doctors to kill his disabled baby, and the Nazi state found it was an easy way to eliminate the disabled and, soon, other undesirable groups. In 2014 a memorial was unveiled in Berlin to the estimated 200,000 disabled people killed by the Nazis and naming that first child victim.

But of course, killing people, disabled or not, is wrong. Disabled people are still fully human. If we devalue people because of our ableist response to their impairments it is the slippery slope towards devaluing their lives and needs. Some say if such ideas become widespread euthanasia of disabled people would not be far behind.

This does not deny the reality of the battle to get appropriate and timely services and supports, to have people who will listen and provide for both the disabled person and the family carers. Many parents of autistic people endure isolation, stigma, extreme exhaustion and complex health needs of their own. Their caring duties are 24/7. Their children often haven’t the words to explain their needs and act out their pain, frustration and boredom. Caring is heavily gendered with often a single mother relying on a network of women for professional care services, many equally tired from multiple jobs. But in a situation when the highest skills, physicality, creativity, patience and status is needed, caring instead has low value, low pay and usually minimal training. Sheer availability is the main requirement.

There are also a few international cases of autistic adults killing their mothers or other caregivers, and many families live in fear of their beloved child’s violent behaviour.

I have a friend whose situation is similar to that of the Knox’s. She parents alone, and battles for everything. Government and non-government agencies are rarely her friend. Money is always tight and every day and night is hard work. Her daughter has assorted medical conditions and pain as well as autism.

Armies of officials and workers traipse in and out of her house and her life. There are some good and helpful people but nothing is sustainable; a problem-solving person leaves or the rules change. There are some horrible people who help destroy what little she has. But she keeps fighting for her daughter’s rights to live and participate in her local community. Like many of us with autistic adult children, she worries about the future. She would do anything for her daughter – but never kill her. Those who seriously consider murder have gone to a dark place and need urgent help.

There are solutions. Many of us hoped they would have been established following the 1997 murder and the following decade of policy attention. The ASD Guideline had hundreds of recommendations, but only a few were ever implemented. That research is a decade out of date now and global knowledge of autism has moved on, largely based on information provided by autistic people themselves. We need to update and resource data and improve processes and supports, urgently.

Let’s start by developing a well-trained, integrated, professional care workforce with good pay, conditions, and career progression so it becomes a desirable highly paid career. Let’s have lots of quality respite options, for parents/carers and their children across their lifespan. Let’s encourage and facilitate the participation of disabled people with so called ‘high and complex needs’ in the community, in neighbourhoods, schools, shopping centres, enterprises and recreation facilities so they become known as real people, with interests and personalities. Government and other agencies (and society as a whole) need to see and treat disabled people and families as more than inconvenient expenses. We all need to heed the advice of autism advocates. And as Professor Werry said two decades ago – listen to the parents.

That is how we can honour Ruby Knox and Casey Albury.