Access by Various artists

49

Some aspects of New Zealand's disability history - part two

by Hilary Stace

In part one I covered the eugenic ideas that underpinned public policy in the first decades of the 20th century. The assumptions that disability indicated inferiority and likely moral degeneracy led to discriminatory attitudes, laws and policies against disabled people, particularly those with intellectual disability or psychiatric conditions.

But the arrival home of disabled soldiers following the First World War (and to a lesser extent those from the earlier South African War) challenged the dominant eugenic narrative around disability. These soldiers exemplified the eugenic ideal of fighting for the empire and their impairment couldn’t therefore be linked with immorality or blamed on faulty genes.

Some, such as Clutha Mackenzie, came from privileged families. This son of a Liberal politician and short-term Prime Minister lost his sight at Gallipoli. In the 1922 general election he stood unsuccessfully for the Reform Party against the Labour Party’s John A Lee, who had lost an arm in battle. Mackenzie then put his considerable energies into the Jubilee Institute for the Blind (later the New Zealand Foundation of the Blind) and the development of a universal Braille system.

The large numbers of disabled war veterans led to the creation of the new concept of ‘rehabilitation’, literarily to make fit again. This was different to the earlier concept of habilitation for genetically deaf and blind people who could potentially be trained to be fit and useful citizens.

The concept of rehabilitation became strongly linked with employment, as in the development of the organisation which became the Rehabilitation League and which still exists as employment service Workbridge.

Hinge, Leslie, 1868-1942. World War I returned servicemen embroidering [Christchurch Public Hospital].

Ref: PAColl-5932-27. Alexander Turnbull Library, Wellington

In the meantime, regular polio epidemics from 1916 also left thousands of children and some adults with physical impairments. Although physical disability was not as shameful to families as intellectual disability, services were often hard to find. During the Depression it was particularly tough for many families struggling to support their affected family member or access hospital care, therapy or aids.

Some New Zealand surgeons who had developed their skills during war service wanted to help. In 1935 Dr Alexander Gillies and Charles Norwood of the Wellington Rotary Club launched the New Zealand Crippled Children Society. The CCS was gifted a large home in Takapuna which became the Wilson hospital for physically disabled children, including those with polio and cerebral palsy. It was one of a few specialist residential providers across New Zealand.

The Wilson Home for crippled children in Takapuna, Auckland. Photograph taken in 1943 by John Pascoe. Turnbull Library Ref: 1/4-000643-F

The first Labour government (1935-1949) brought in various measures including free hospital treatment. In 1936 an invalids’ pension was introduced, and in 1938 the Social Security Act which is regarded as the foundation of the welfare state, provided disability support and pensions. This principle of taxing according to means in order to receive support when needed was thus established in New Zealand.

In 1939, the Director General of Education, Dr Beeby, and Minister of Education, Peter Fraser, made their visionary statement about the rights to education for every child including the words ‘to the best of their abilities and the fullest extent of their powers’, (a goal which still remains elusive to many disabled children and their families).

The rise of parental advocacy is exemplified by the beginnings of the IHC. The Intellectually Handicapped Children’s Parents Association was founded in 1949 by Hal and Margaret Anyon, Wellington parents of a son with Down Syndrome, who wanted him to have an education, employment and a home in the community. At that time children with intellectual impairment were among those least likely to access education, and were often sent to institutional care.

IHC women fundraising 1960s Turnbull Library PA Coll 9653

As a result of much dedicated activism, the parents managed to set up educational and community facilities in many centres. That was in line with best practice World Health Organisation Guidelines of the time.

In spite of best practice evidence and parental advocacy turning against the institutions, the 1953 report of the National Government’s Consultative Committee, which became known as the Aitken report after the doctor who was chair of the committee, recommended that disabled and mentally ill people be housed in large ‘mental deficiency colonies’ containing several hundred people, and extending current institutions such as those at Levin (Kimberley) and Templeton.

Parents would be encouraged to leave their disabled children in these institutions from about the age of five. The report was greeted with disappointment by the parents of intellectually impaired children who had lobbied politicians for the review, hoping it would recommend community support for their children.

The committee, which included no ‘consumer’ or parent representatives and only one woman (who was appointed after complaints), not only rejected their pleas but also reinforced the use of words and concepts such as ‘idiots’ ‘imbeciles’ and ‘feeble-minded’ that the parents had objected to. Some parents put their children in such institutions and kept their existence secret, often for many decades. One elderly man – whose brother was sent to one of these places ‒ told me this was because the parents thought the siblings would not be able to find partners if the prospective spouse knew about their ‘handicapped’ sibling.

Only six years after the Aitken report, in 1959, following a change of government, another report headed by Sir Charles Burns of the New Zealand Branch of the British Medical Association, an ally of the IHC parents, recommended small residential homes in the community and criticised the Aitken policies as ‘based on outworn and outmoded ideas’. But the momentum generated by the Aitken report took another two decades to start turning around; indeed, the 1970s saw the largest number of people entering institutions before numbers started to drop.

Funds were provided for services such as day programmes for intellectually disabled people. The 1960 Disabled Persons Employment Promotion Act was passed so organisations could employ disabled people in ‘sheltered workshops’ without any requirement to pay, or give them employment rights. Contemporary thinking was that giving people something to do, and thus keeping them out of institutions, was more important than having the working conditions non-disabled people protected. Of course, disabled people had no say in the formulation of this policy.

Concerns about institutionalisation had been growing since about the 1940s and in 1972 a Royal Commission on Psychopaedic Hospitals recommended transference from large institutions to community care, and led to three decades of deinstitutionalisation, during which the Government had to pay for both community care and upkeep for the large institutions (although both suffered from poor resourcing). At its height, an estimated 2% of the population was institutionalised with more than 800 people at Kimberley. By 1978, the occupancy rate was 0.24%, the lowest since 1881.

The establishment of the ACC had its origins in the Second World War. Members of Parliament and other influential citizens who knew about the impact of war injuries and disability on earning potential were behind the establishment of the Woodhouse Commission in 1967 which recommended the no-fault compensation scheme. By 1974 the ACC was up and running for those workers who disability was caused by accident.

But ACC served only this one group. A response was the 1975 Disabled Persons Community Welfare Act which extended some of the benefits, albeit in a less generous and means-tested form, to all disabled people. This Act was shepherded through Parliament by J.B. Munro, Invercargill Labour MP, polio survivor and IHC organiser. It also legislated compliance for the recently-developed New Zealand Standard building code 4121 including guidelines for accessibility. This standard marked the first time society had had to change for disabled people, not the other way around.

The global reforming zeal of the 1960s and 70s encouraged disability activists. The big changes of the following decades would be a result of political activism by disabled people themselves. I will outline some of the landmarks in part three.

13

Phillip Hughes: a personal reflection

by Matt Frost

I'm 34 and I have autism spectrum disorder. It is not an over-the-top statement to say I have loved one sport in particular for 25 years --indeed, it's been a special field of interest for me. That sport is cricket.

I love the tactical and thinking nature of the game and the skill that its best players show, and I value the relationships I've made from it. Cricket has allowed me to develop social relationships with diverse ranges of people who I would never have met otherwise and is an amazingly enriching part of my life.

The sport I love has been deeply rocked this past week. During a high-level domestic match in Australia, a highly-skilled batsman who had played for his country and was looking to do so again, Phillip Hughes, was seriously injured by a ball bowled at him and later died in hospital. The bowler, Sean Abbott, was also skilled and broke no laws of the game when he delivered the ball at Hughes. I think it is very important to stress this. I must say I really liked Phil Hughes' style of play -- he was aggressive and it was clear he loved the game.

Lovers of the game have reacted in all sorts of ways to express how they feel. They have put bats by their doors, they have stopped matches in tribute and they have cried. All of this is really healthy in my view, as I'm pretty sure we have deep cultural expectations that don't allow us to grieve and cry enough and take care of our mental health at times like this.

Phillip Hughes was taken very suddenly and was a sportsman who was fighting hard to be at the top levels of performance. I think that is a major part of people's shock -- the transformation from that state to death was so quick. I do think this is a part of this event we need to acknowledge and was certainly part of what I saw yesterday with my club side -- fit and active young men were being forced to reflect on the fact that one twist of fate in the game they love playing could make them not so fit and active.

That was troubling and caused some reactions that intersected with my work life -- for example I heard more than one player express relief that Hughes wasn't brain-damaged by the ball. As someone who has worked for the rights and lives of people with brain damage and other impairments, that did trouble me slightly -- is death preferable to being impaired?

But I don't judge that comment: the shock of seeing the transformation of Phil Hughes is dramatic and troubling for those who, like me, love the sport. And it should give pause for thought to those who engage in disability work or who are in the disability community. We shouldn't ignore or lighten the challenges and changes that developing an impairment can bring, particularly if sudden.

On questions of mental health, many people have expressed very justified concern for the bowler, Sean Abbott. There is concern that he may never play the game again. I hope that's not the case, although again I wouldn't judge him if he didn't. I also hope that the skilled mental health teams working with Sean Abbott do two things.

Firstly, that they don't minimise the impact on him by saying "you didn't do anything (or not much) wrong". Strictly, that's true -- he broke no laws of the sport. And in fact, if we are being honest, part of the attraction of the sport is the element of contest in it, which includes the bowler using tactics to get the batsman out. That's core to cricket and shouldn't be reduced say by banning the bouncer. But that's not what Sean Abbott's brain is probably telling him. It will be telling him "evidence says you did do something wrong - seriously wrong." I hope he is allowed to feel and process that.

But I also hope they work with him to remind him of the amazing times he has had playing cricket - the skill he showed when he took wickets, the joys he felt when his team won and which he gave to fans, the fun he had which is the reason he plays the game. Those are really valid emotions too and I hope they are reinforced for him.

So where to from here for cricket? People will and absolutely should continue to play and love the game - that's what Phillip Hughes would have wanted above all else.

I think a possible answer lies in two things. The first is the reaction of the cricket community all around the world. Its genuine sense of togetherness and care gives me a massive pride and sense of hope for the game. The second thing is connected to this.

When the Laws of the Game were being rewritten coming up to 2000, the administration of cricket made what I think was a hugely wise decision. They decided to articulate what they felt the Spirit of Cricket was and to ensure it was the first thing in the Laws. The Spirit starts like this.

"Cricket is a game that owes much of its unique appeal to the fact that it should be played not only within its Laws but also within the Spirit of the Game. Any action which is seen to abuse this spirit causes injury to the game itself."

I have seen plenty of this spirit yesterday and ever since the news came through about Phil Hughes. That is why I hope parents of young kids who want to play cricket don't stop them from doing so - what happened could not have been prevented and shouldn't stop future generations taking up and loving the sport.

But it has also made me think about something else. What's the spirit in which we engage with questions around disability? We talk about values a lot in our sector, but I'm thinking after what I've seen in the last few days that spirit is something different. Here is not the place to answer that question but I do think it's a valid one for our community. Here is the place to say that the spirit that the cricket community (players, officials, fans of the game) has shown demonstrates its character. It's that which I hope will continue to be the greatest legacy of Philip Hughes and it will be the way I will try and remember him - by continuing to try (as hard as it can be sometimes) to play this game called life with spirit.

RIP Phillip Hughes 1988-2014. "Baggy Cap 408" 63 not out.

 

Matt Frost is as a senior advisor at the Office for Disability Issues. This blog is a personal work and does not represent the Office.

6

Research Invitation - Life before and after the Internet

by Philippa Smith

Kia Ora

I am Dr Philippa Smith from the institute of Culture, Discourse and Communication at the Auckland University of Technology. I am the lead researcher in a project where we wish to interview people with disabilities to assess the impact that the internet has had on their lives. 

We are looking for participants to interview, both men and women who are aged 45 and up who knew what it was like before the advent of the internet and can therefore comment on the ways that the new technology has impacted on their lives. 

Confidential interviews can take place either via the internet (email or skype) or in person. The participants in this study will represent a range of disabilities whether physical or cognitive and therefore restrictions on the numbers of people with similar impairments who can be involved will be applied.

If you are interested in being part of this project and wish to find out more information, please email me at .

68

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

by Hilary Stace

There is no definitive version of Pākehā disability history. My interpretation here may explain why disability was often viewed negatively, or is even invisible in the historical narrative.

Nineteenth-century New Zealand was settled by immigrants mainly from Britain and Europe who were prepared to endure a risky and lengthy sea trip for a chance of a better life. Although infectious illness and accidents were common, disability was unwelcome as it challenged the idea of a new society, and it could be a burden on others in a time when hard physical work was a daily necessity. So support was left to the benevolence of families or groups providing charitable aid.

The immigration acts that restricted the entry of Chinese in the late 19th century also banned ‘cripples, idiots, lunatics, infirm, blind, deaf and dumb’. The 1882 Imbecile Passengers Act required a bond from the person in charge of the ship before one of these ‘undesirables’ was discharged from the ship, and the 1899 Immigration Restriction Act went further banning the ‘idiot’, the insane and the contagious.

Jack (right) and Rudolph Lousich collecting donations for their father Louis Lousich. The sign reads: Deserving Case. Be so kind as to patronise the blind man a widower with five children who lost his sight and right arm by an explosion of dynamite at Kumara. Smallest donation thankfully received. Photograph taken ca 1897 in Kumara by Steffano Francis Webb. Alexander Turnbull Library Ref: 1/2-049635-G

Mental illness, then as now, was generally feared and misunderstood. A 1846 Lunatics Ordinance provided for public provision for incarceration of the mentally ill, at first in gaols. The first public ‘lunatic’ asylum was opened in Karori in 1854 and one in Porirua opened in 1887. Typically for the time, the Porirua asylum mixed several categories of ‘undesirables’: those with mental health issues, intellectual impairment, alcoholics, elderly and homeless people. For decades, these ‘inmates’ provided large captive communities for doctors and specialists to practice theories and interventions. Physically disabled people were often housed with old people in the ‘chronics wards’, established in the early 20th century in ordinary hospitals.

As New Zealand society developed, children began to be seen as more than just little adults or economic units. Their education became important and the 1877 Education Act provided free, secular primary school education. The Act’s purposes were for a better educated workforce but also government surveillance of children and their development. Rules and inspections were rigid.

As the 19th century progressed, so did medical and social policy, and some groups such as those with vision and hearing impairments, were seen as ‘habilitable’, meaning they had potential as worker citizens. Hence, the establishment of the residential schools which inadvertently provided the sites for deaf and blind people to develop cultures in opposition to oral and sighted cultures, and thus activism among these impairment groups.

The new century coincided with an increasing interest in the science of genetics and heredity initially raised by Darwin but developed by others into what is known as ‘social Darwinism’. In New Zealand these ideas were taken up by both liberals and conservatives who were concerned about the decreasing white middle class birth rate and consequent fears of losing their racial (and moral) supremacy.

In 1903 New Zealand-born W A Chapple published The fertility of the unfit which preached sterilisation for people with mental, moral and physical defects. The Eugenics Education society was founded in Dunedin in 1910 with an influential membership, one of whom was Truby King, the Medical Superintendent of Otago’s Seacliff Asylum. Theories and language linked intellectual impairment and some physical impairments like epilepsy to inferiority and moral degeneracy. Negative eugenists sought to limit fertility by public policy while positive eugenists supported interventionist policies to increase population ‘fitness’.

Seacliff Hospital, Dunedin, showing the grounds, taken 1912 by an unidentified photographer. Alexander Turnbull Library Ref: PAColl-8769-02

In this context, Plunket was started in 1907 to train mothers to grow healthy little citizens and soldiers for the empire. Founder Truby King, who had a physical impairment, later became Inspector General of Health.

He, his wife and supporters were positive eugenists who believed that teaching mothers the strict rules of scientific mothering would increase the fitness of the race. Committees of wealthy middle class women then took the ideology to the breeding populace. King was our local manifestation of the scientific mothering trend, and part of the international tradition of male experts telling women how to parent and then blaming them if anything went wrong. The mothers themselves of course were never consulted.

French-born nun Suzanne Aubert had personal experience of disability and was one of the few to speak out against eugenics. She founded her Home for Incurables in Whanganui in 1899 and, in 1907, opened her first Home of Compassion for all ‘needy’ or disabled adults or children in Wellington.

But certain types of intellectual impairment continued to be linked with ‘immorality’. So girls’ and boys’ homes and farm schools were founded mainly to keep the sexes apart and prevent criminality, deviant behaviour or reproduction. In 1908, Otekaike (Campbell Park School) near Oamaru was opened as a residential school for ‘feeble-minded’ boys and a few years later a similar residential school for ‘feeble-minded’ girls, Salisbury, was opened in Richmond, near Nelson.

These special schools were run by the Education Department, while Levin Farm, opened on the site that later became the Kimberley psychopaedic hospital, and Templeton near Christchurch, came under the Mental Hospitals Department. Differing classifications of ‘defect’ determined which government department was responsible for each individual.

The 1911 Mental Defectives Act classified groups of ‘other’ into six categories including idiots, imbeciles, feeble-minded and epileptics. The School Medical Service was founded to identify ‘defective’ children so they could be sent to the appropriate institutions and the 1914 Education Act made it obligatory for parents, teachers and police to report ‘mentally defective’ children to the Department of Education. The census of 1916 was the last time until 1996 that specific questions about disability were asked, possibly due to the lack of enthusiasm for self-identification.

In 1925 a Committee of Inquiry into Mental Defectives and Sexual Offenders  linked intellectual impairment with moral degeneracy and potential sexual offending, and sought to separate suspect parents and children. At-risk children could be taken off families and the short-lived Eugenics Board kept lists of ‘defectives’. A rare voice of protest was expressed by a mother about the proposed travelling clinics which would examine intellectually impaired children (Dr Gray was the Acting Inspector General of Health).

“Oh Mother, save me from Dr. Gray

‘Cause teacher says he’s coming to-day

And if I’m stupid he’ll take me away.

Oh, Mummie, save me from Dr.Gray!”

“I cannot save you, my little child.”

His Mummie said and her eyes were wild.

“You belong to the State, you’re no more my child!

But Oh, my darling don’t stupid be

Or he’ll say we’ve tainted heredity.

And must be eradicated – you and me!”

(quoted in Robertson, S. Production not reproduction: the problem of mental defect in New Zealand, 1900-1939. Unpublished BA Hons, University of Otago, 1989).

After World War Two the revelation of the extent of eugenic policies in Nazi Germany (including the death of hundreds of thousands of disabled people) dampened overt policy enthusiasm for eugenics. However, it has never gone away and ongoing manifestations include occasional politicians urging limits on ‘breeding’ of undesirable groups such as beneficiaries. Many disability activists are concerned at the eugenic potential of genetic technologies such as pre-implantation genetic diagnosis, amniocentesis and other pre-natal testing to prevent births of ‘undesirable’, meaning disabled, children.

Life was often tough for disabled people and their families during the century following the 1840 signing of the Treaty of Waitangi and the official beginning of Pākehā settlement. They often faced widespread personal and policy discrimination, and lack of understanding and support. The establishment of the welfare state, and the rise of identity politics in the second part of the 20th century set the scene for disability activists to fight back. More about that story next time.

6

Art and disability: a festival

by Russell Brown

The three-day InterACT 2014 Disability Arts Festival kicks off tomorrow at Auckland's Corban Estate and, in its fourth year, provides an intriguing mix of established artists and joyous, unbridled inclusion.

One one hand, there are the gala nights on Thursday and Friday, which feature, respectively, Bionic Valentine, a new production by Interacting Theatre, with music by Genevieve Skinner and Gareth Edwards; and the irrepressible Caitlin Smith, with Touch Compass dance company (who are amazing), Variety Voice choir and The Mutes, with Mike Loder as MC.

But there are literally hundreds of other performances over the three days, along with workshops and longform classes aimed at bringing creative work and play within the reach of people with disabilities. It's quite a remarkable achievement to bring all this together on the part of festival director Paula Crimmens. And it's free. (Although reservations are available for the gala events.)

It also makes me think that although I know a few people the people involved, I know little about disability art, outsider art, or whatever name you care to give it. Help me out here, folks: what happens in this world? What's the buzz?