Access by Various artists

Cause, care, cure and celebration. What do these words have in common? Answer: they were identified and named as conflicting disability agendas by autism policy theorist, Dana Lee Baker, from Washington State University, in her 2011 book, The politics of neurodiversity.

They are her words but they make sense to me as someone trying to understand why autism policy (and disability policy generally) can be so complex, why we seem to have trouble agreeing and getting it right. It depends on your relationship to autism (or disability).

Research money is often directed to cause and cure. People doing this work have high status and are often conference keynote speakers. Meanwhile care usually has a negative focus which is reflected in reports about how much disability costs. So there is resistance to paying family carers, or staff for sleepovers when caring for disabled adults in residential care; benefit payments have rigid eligibility criteria, and punishments for noncompliance are severe. Meanwhile, the autism/disability celebration movement is growing.

Cause

Cause research is big business. But it privileges clinicians and professionals. It can also soak up limited autism research funding, meaning less is available for research to improve access to education, employment, independent living, welfare support, and public health care.

Care

Care most often means work for mothers (or other family members). But it is not valued work. The extra stress when there is a disabled child in the family means the parental relationship often breaks down leaving (usually) the mother with no support, no income and a community often hostile to their autistic child. Meanwhile disabled adults and their family carers had to fight in the courts for a decade for the family carers to be paid on the same basis as strangers coming into the home.

As the Minister of Health said last year when announcing the minimum wage for a maximum of 40 hours a week for only some parents (not parents of children, nor spouses) and denying any further access to legal challenges, ‘Our society expects parents to care for and support their dependent children’ (with a sub text – for no pay and whatever their age).

Eligibility for and uptake of this policy has been, unsurprisingly, minimal. Large scale institutionalisation used to be the answer, albeit one that often denied the humanity of disabled people. But government policy has not yet worked out equitable support mechanisms that dignify autistic or other disabled people and their families.

Cure

A cure for autism excites many clinicians and pharmaceutical companies. However, many autism self-advocates fear the eugenic consequences. If pre-natal screening, for example, becomes effective autistic people might cease to exist. We also need to remember the mistaken ‘cures’ of the past such as lobotomies, heavy drug regimes or un-anaesthetised ECT. Cure language is all about deficit and suffering, and media stories emphasise the ‘tragedy’ of autism. It is not healthy for our autistic children to hear such talk.

Celebration

In contrast, the most significant development in the last 20 years has been the growth of the autism identity movement. The view of autism as something deficient is now challenged by members of the autism self advocacy community. In what is sometimes called the ‘autism cultural wars’, autistic adults now challenge as abuse the therapies and interventions for which some parents of autistic children pay a great deal. Some family members are also joining them. This can also be seen as part of the bigger disability rights and celebration of identity movement.

Cause, care, cure and celebration may be four divisions but people need not be in just one camp, and their perspectives change over time. As a parent of an autistic child, I started with a care focus and now celebrate autism. I know adults who celebrate their autistic identity but are also very interested in genetic research and take medication hoping for a cure for their most annoying symptoms.

Four kingdoms of autism: illness, identity, injury and insight

One of the most influential people in autism is Dr Thomas Insel, a psychiatrist and behavioural neuroscientist and the director of the United States National Institute of Mental Health which oversees government funded autism research. Last year he wrote a blog post trying to make sense of the contradictions. He called them: illness, identity, injury and insight. Illness refers to biomedical approaches.

He has learnt about identity because in his role he has had to work with members of the Autistic Self Advocacy movement who have challenged the system in order to be heard in that space. Their leader, Ari Ne’eman, is also on Obama’s National Council on Disability. However, Ari’s nomination was held up by senators aligned to the cure autism lobby who objected to someone being positive about living with autism.

For Insel, injury reflects the concern of some that autism is caused by vaccines or something else inflicted on a healthy child. What he calls insight reflects his own background and the value he places on the work that cognitive neuroscientists are doing to understand the social brain. He has developed his thinking in further blog posts.

Viewing autism or disability like this via what can be called a ‘critical diagnostic’ approach may seem divisive, but it can be inclusive with room for all, and it allows for attitudes changing over time. Whatever their priority, all groups aim for better understanding. Where do you fit?

“It’s only words”, sang the Bee Gees in the early 70s before their voices got squeaky. But words as they are used around disability issues are a contentious minefield.

While it’s important for a disabled person not to feel insulted or undervalued by the use of words, we need to pick our battles carefully, and give some thought to the consequences of making people so nervous about using the wrong term regarding disability that communication may be stifled. Only if communication is open and straightforward can we hope to overcome misconceptions that hold us back.

One counterproductive linguistic contortion is the use of “person-first” language.

Some years ago, the New Zealand Government published a discussion document on its Disability Strategy. In that document, they referred to “people experiencing disability”. The response to this convoluted emasculation of the English language was a resounding “bah” from the majority of those actually being described. As a result, New Zealand Government policy, by request of the majority of those living with disability on a daily basis, is to refer to “disabled People”. Thank goodness for that.

Yet every so often, I still come across professionals who insist on referring to “people who are blind”, “people with vision impairments”, or even “people experiencing blindness”.

There are many adjectives that might be used to describe us. I’m a white guy. I’m a short person. I’m also a blind man. Saying that I’m a blind person no more defines me in totality than saying I’m a white man. It’s just one adjective that might be used to describe me.

Why does this matter? It matters because when you go through unnatural-sounding linguistic hoops to describe one particular characteristic, it draws more attention to it than it would were you to use more regular construction. My partner is a beautiful woman. Sometimes, I remember to tell her that. If I were to describe her, either to her directly or someone else, as a woman experiencing beauty, everyone would think that a rather peculiar turn of phrase, or should that be a turn of phrase with peculiarity?

There is a widely held myth among the general public who don’t often encounter blind people, that “blind” is somehow an inappropriate word to use. Part of that is because of all the “person-first” language that was so in vogue a few years ago, and that stragglers still cling to.

People genuinely curious about the needs, capabilities and opinions of blind people, should be able to ask honest and thoughtful questions without being hung up on the language.

During “the person-first” madness, it was claimed that using “person-first” language would remind people that we’re people first, our disability is second. All it did was to make us seem too sensitive, and intimidate people who became fearful of offending by using the wrong words in the wrong order.

I am not, however, suggesting that words never matter or can’t be offensive. Not long after writing my previous post here regarding the absence of disabled people from the media, I was browsing the Stuff website when I read the headline “Customers Angered by the blind leading the blind”. This was one of those cases where I believed it was appropriate to call someone out on their word choice.

It’s important because, while a very common expression, it denigrates an entire group of people and reinforces inaccurate stereotypes about the degree to which one is capable when blind. Survey after survey finds that employers believe that if they employed a blind person, their blind employee would be at higher risk of accidents in the workplace than sighted employees. In fact the reality is the opposite, but it’s a hard perception to shake. Certainly, expressions like “the blind leading the blind” are no help.

In fact, when the blind do really lead the blind, the results are just as profound as Maori leading Maori. It's another case of tino rangatiratanga (self-determination). It's something to be celebrated. Blind people live with blindness daily. We’re in the best position to determine how resources raised in our name are appropriated.

I appreciate that "the blind leading the blind" is a term with a lengthy history. It's found in the Bible, in Matthew 15/14. But the notion that "we've always said it, so what are you on about", is no defence. There are other biblical teachings that are no longer considered by the vast majority of people as appropriate in 2014, including attitudes to women and gays and the stoning of adulterers.

Similarly, there were expressions in common usage even when I was a child that have thankfully been banished to the dustbin of offensiveness. During my childhood, it was common for adults to use the expression "a Maori day off", reinforcing the stereotype that all Maori were lazy. I'm delighted to reflect that no one would dream of putting that in a headline now.

It’s an ongoing battle. It wasn’t that long ago that Paul Henry was widely taken to task over his disgusting use of the term "retarded". There are terms that are no longer appropriate to use as we embrace people with disabilities in mainstream society, and I would submit that "blind leading the blind" is one such term.

I wrote these thoughts, in quite some details, and sent them off as a letter of complaint to the Dominion Post. I nearly didn’t. I’ve had cause to raise issues of language with other media outlets before, and have never had acknowledgement of the media’s need to be considerate about the language they use regarding disability. To my great surprise, I got a reply acknowledging my points, an undertaking to change the headline, and a commitment that headline writers would be spoken to regarding the phrase. I really couldn’t have asked for a more satisfactory response. This only goes to show that, while advocacy can often feel like banging one’s head against a brick wall, you just never know when the wall is going to budge a little.

So how do I reconcile my contempt for “person-first” language with my disdain for terms like “the blind leading the blind”. I think it comes down to this. “person-first” language trips people up, and is unlikely to change attitudes. Phrases that depict disabled people as incompetent, no matter how common their usage, can actually make a significant, albeit subconscious, difference to the way we’re perceived. Those perceptions translate into job opportunities and inclusion. That’s why words sometimes do matter, very much.

As many NZ babies do, I developed eczema and asthma. My mother took me to various clinicians. I have vague impressions of kindly doctors with strange accents. In retrospect they were probably part of the Jewish diaspora - educated at the best medical schools of Austria and Germany before ending up as refugees at the other end of the world.

Childhood memories are of dietary restrictions, of being smeared with evil-smelling black coal tar ointment and swathed in damp bandages, of evening spoonsful of syrupy Phenergan from a flagon kept in the kitchen cupboard, and having my hands tied in cotton gloves so I couldn’t attack the eternal burning itch. My mother often sat with me during the night while I struggled to breathe. The in breath was the hardest.

It must have been tough for my mother providing my 24 hour care plus attending to my three older siblings. My father was particularly busy with his small publishing business and the lobby group for young businessmen known as the Jaycees. His membership of that organisation led to his inclusion as the ‘youth’ member (at 39) of the Mazengarb Inquiry into juvenile delinquency which met for several months of intense deliberation, without pay, and eventually produced a widely distributed report.

Two official inquiries in the 1950s sought to contain the ‘defective’, the ‘deficient’, the ‘deviant’ and the ‘delinquent’ - the interchangeable fears of conformist New Zealand. The Mazengarb Report was one and the other was known as the Aitken Report after its chair. In 1953 this so called ‘consultative committee’ urged the Government against both World Health Organisation best practice and the hopes of many parents of disabled children for better community support.

Instead, it recommended expanding the existing network of institutions into large ‘mental deficiency colonies’ to which parents could send their disabled children and forget about them. And so it happened. Although many family members grew up not knowing about their institutionalised sibling, I bet the mothers never forgot.

By the early 1970s up to 2% of the population was locked up in the network of psychopaedic and psychiatric hospitals, residential schools and children’s homes throughout the country. The profession of psychopaedic nurse (specialists in nursing intellectually disabled children) was developed in 1960s New Zealand. The deinstitutionalisation movement took off in the 1970s but it took until 2006 for the last big institution, Kimberley, to close.

But I was lucky. No one suggested to my mother that the strain of coping with my condition would be alleviated by sending me to an institution. My impairment was considered unfortunate but did not make me ‘defective’.

Others were not so lucky. The State was anything but benign for the young Robert Martin. He was also a 1950s baby boomer. His was a difficult birth and he was soon deemed ‘retarded’. When he was 18 months old the authorities suggested he be placed in the expanding Kimberley Hospital and Training Centre near Levin.

During his childhood he was often shifted and he also experienced Campbell Park residential school in North Otago, foster care, and the notorious Lake Alice Hospital in rural Rangitikei. There were occasional good and kind staff but the institutional life was harsh and frequently abusive. But, as he says, at least he could walk, talk and fight back, unlike some of the other inmates.

When Robert reached 15, the State tossed the angry teenager out of care. The anger was not surprising as he had been denied not only human rights, but culture and identity. He relates that he had not experienced 60s music nor heard about the Vietnam War, but most affronting was that he didn’t know about the All Blacks. So while I was playing Beatles records, marching against the war, and protesting against racist rugby tours, institutionalisation had denied him this basic knowledge of the world.

Fortunately, Robert was resilient and his leadership potential was noticed and nurtured. He became active in sport, married, and became a self-advocate locally and internationally. He spoke at the United Nations during the drafting of the United Nations Convention on the Rights of Persons with Disabilities as head of the NGO, Inclusion International. He was made a Member of the New Zealand Order of Merit and became the first inductee into the Attitude Hall of Fame. He recently featured in his second Attitude documentary, and a biography is in production.

His story is just one of many. The State was also punitive to many of my female age peers. A 2009  60 Minutes documentary, Shock Treatment, told the sad story of a group of unlucky girls placed in residential State care who were suddenly all diagnosed with epilepsy and put on an experimental cocktail of strong drugs, with ECT as punishment. Of course, without their consent or even knowledge. Eventually the management changed and the treatment ceased, but the long term effects remain severe for many of them.

Meanwhile truant or misbehaving children (mostly boys and often Māori) as young as seven and many having what we would now recognise as learning disabilities or ADHD could be picked up by the authorities and deposited in one of many children’s homes. One was Epuni Boys’ Home in Lower Hutt as experienced by David Cohen and described in his 2011 book Little Criminals. For some it was the first step of life long incarceration.

How could the State be so benign to me and so punitive to my peers? We are not so obsessed with the defective, deficient, deviant and delinquent these days. But being disabled, poor or brown are still major risk factors for exposure to State maleficence. What needs to happen so that the State protects instead of punishing its most vulnerable citizens? Meanwhile my eczema is reasserting itself. As a child of the Mazengarb Inquiry, I also itch for justice for the State’s victims who were not lucky like me. 

by Sacha Dylan

Disabled people are part of every community and grouping in New Zealand. However, most surveys do not ask about us, and we’re poorly understood for various reasons. Let’s start fixing that together.

How many

Official Census results every five years or so say disabled people are between 1/6th and 1/5th of all New Zealanders.

That’s 750 – 900 thousand people. More than you thought, right?

Proportions

More older people than younger people are disabled in some way. The impending surge in retiring ‘boomers’ is relevant, because about half of all over-65s are disabled.

Disability affects more boys than girls and more older women than older men, but matches our gender balance overall.

More Pakeha and Maori people are disabled than Pacific or Asian people – which might reflect immigration restrictions, or something else we don’t know about yet because nobody has studied it.

Disabled people tend to be poorer, less educated, and far less likely to be employed. That restricts a whole lot of options.

Impairment happens through birth, illness, accident and ageing. At what stage of our life it happens has a big impact, but is not recorded in most statistics. About half of disabled people have more than one form of impairment.

Out of every 9 disabled New Zealanders:

• 5 have impaired mobility (getting around).
• 3 have impaired hearing.
• 3 have impaired thinking, understanding or remembering.
• 3 have impaired agility (grabbing things, etc).
• 1 has impaired vision.
• 1 has impaired mental health.

How impaired?

It’s also a matter of degree:

• Most people with impaired mobility do not use wheechairs. They may just be unsteady on their feet or have trouble climbing stairs or walking long distances. Only 1 in 10 mobility parking permit holders have wheelchairs – please think about that before you abuse the other 9.

• Most people with impaired vision are not blind. They are more likely to need larger text and clearly-marked steps rather than braille or a guide dog.
• Most people with impaired hearing are not part of the Deaf community who share New Zealand Sign Language. Their needs can be rather different.
• Only about half of disabled people use disability support services, equipment or organisations.
• Only 4% of disabled people live in institutions. Most of us live in our own places or share with others like everyone else does.
• Many disabled people don't think of ourselves as disabled most of the time. Only when we encounter disabling settings or circumstances.

Remember all of that when you’re looking for a ‘representative’ group. What would you like to know more about?

A worldwide Creative Commons Attribution 3.0 Unported License applies to this post. Sacha's personal website is here.

Being lost for words when you’re a talkback host could hardly be considered ideal. But back in September of 1992, I was hosting an evening talkback show on a fledgling radio station in what was then a newly deregulated, highly unstable radio market. And something happened that, for one of the few times in my life, left me lost for words.

I was born blind. Yes, blind. I’m not visually impaired, and I’m certainly not visually challenged. I’m comfortable in my own skin. My blindness hasn’t stopped me from doing anything of significance that I’ve wanted to do, other than perhaps drive a car, and even that won’t be impossible forever.

I don’t think about my blindness every waking minute, and certainly in those days when I was hosting talkback, I didn’t talk about it very much at all. My interests were the same of those of my listeners back then. Would Winston Peters be kicked out of the National caucus? Would a young governor from Arkansas defeat an incumbent president who at one point seemed unbeatable? Then there’d be the occasional bit of banter about much less consequential stuff. Yes, it was your typical talkback formula.

But on this occasion, welfare reform and Jenny Shipley were the topic of conversation. It added value to the discussion for me to mention that I was blind, and had had some experience with the benefit system in the past.

A few minutes after making the comment about being blind, an incredulous caller was on-air saying, “Did you just say you were blind”? When I confirmed that she’d heard correctly, she said, “that’s amazing! You really don’t sound blind at all”.

It was at that point that I just had no idea how to respond, other than eventually to say, “how does a blind person sound any different?” It was also at that point that I realised the work I was doing, on this under-funded, struggling Auckland radio station, had the potential to change attitudes. Just opening the microphone and engaging with listeners on the issues of the day may cause them to rethink their perceptions of what blind people, and perhaps other disabled people, could do.

Anyone who remembers the radio market after frequencies were put up for sale as a result of the Fourth Labour Government’s reforms will know what a crazy time it was. That particular radio station went out of business. I moved to another. It was taken over and largely automated. At that point, my wife started suggesting rather insistently that if we were going to start a family, I might like to consider a more stable career.

Much of the work I’ve done since then has been in the blindness fields - in Government relations, niche-market Internet broadcasting, and IT. Some might argue that I’ve made bad career decisions, because when anyone looks at my CV, it pigeonholes me a bit in the blindness space. Yet I think all we can ask of our careers is to make a difference somehow. Blind people are a minority, and I’ve been motivated to try to make a difference to that minority.

Since the days when I was working full-time in commercial broadcasting, our politics have become more inclusive. Thanks to MMP, the House of Representatives truly is much more representative. The media now reflects Parliament’s greater diversity, and the need to feature a greater mix of perspectives and voices. Maori issues, and Maori broadcasters, are more prominent than they used to be. There are Pacifica-specific stations, but particularly in public broadcasting, we sometimes here Pacifica voices. The invisible minority remains disabled people.

When has Q+A, The Nation, Radio New Zealand’s afternoon panel, and the opinion pages of our major newspapers featured disabled people offering opinions on issues, both disability-specific and not?

Indeed I initiated some dialogue with the Editor of the New Zealand Herald, or at least attempted to, last year. My offer to write some pieces on disability issues apparently didn’t even warrant a reply, despite similar pieces being published in other countries.

There are two reasons why the invisibility of disabled people in the New Zealand media is of concern.

First, the unemployment rate among working-aged disabled people is far higher than any other minority group. Disability is a broad term, so let me concentrate on blindness, which is what I experience and what I know.

In the US, it’s estimated that up to 70% of working-aged blind people are out of work. Surveys here in New Zealand have shown repeatedly that employers are less likely to employ a blind person than any other disability. It frustrates me, but I understand why. Vision is a dominant sense. If you have it, you’re going to rely on it heavily. Because you rely on it heavily, it’s hard to imagine how a blind person could possibly do any job for which you’re hiring. We’re a tiny minority, so few employers have the chance to get to know a blind person, and to see that even if it may seem implausible, blind people can and do get the job done.

Having disabled people in the media on panels, writing opinion pieces, reporting and presenting, puts disabled people in front of far more of the public. It shows us to be competent, qualified and/or opinionated New Zealanders who are contributors to, and stakeholders in, our society. Just seeing us in these roles can change attitudes.

Public broadcasters such as the BBC and NPR are conscious of this. I know of a number of people with front-line roles at the BBC who are blind, one of whom is a political reporter whose stories are on BBC radio and TV. They cover disability-specific issues, but they cover mainstream issues too. It’s interesting to observe that Britain has also had a blind Home Secretary.

Second, political and public policy matters pertaining to disability need greater exposure in this country. Just as we now readily accept and embrace tino rangatiratanga - the idea that Maori must speak for themselves and that the best policy decisions about Maori are made by Maori, so disabled people need to lead the discussion on critical and often neglected public policy issues.

We presently have two programmes, one on public radio, the other on public TV, about disability issues. They both tend to be focussed more on human interest stories. Many of them are good stories, and I’m glad they’re being told, but I long for in-depth, hard-hitting current affairs discussions about some of the serious issues disabled people face in this country.

Why is someone born with a disability able to access so much less support than someone who becomes disabled because of an accident? Why is there a disparity between the degree to which various disabilities are funded by Government? Is it really appropriate to have disability fall under the Ministry of Health? Does our human rights legislation possess sufficient teeth to effect meaningful change in a timely manner, and how does it measure up to anti-disability-discrimination laws in other countries?

The list goes on and on, and I’ll be covering some of these issues in subsequent posts. But these are public discussions that should be in our mainstream media, on our mainstream current affairs shows with disabled panellists leading the discussion and with taxpayers giving thought to what these issues say about fairness and opportunity in our society.

I’ll continue to advocate for disabled people to be more visible on mainstream programmes and pages in our media. Just because I can’t see you, it doesn’t mean that you shouldn’t see me. The good news, though, is that this is 2014. The mainstream media isn’t the only way opinions can be expressed and issues discussed. I applaud Russell’s initiative in establishing this new part of Public Address, and look forward to the discussion.