Access by Various artists

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?

21

You Can Call Me Brave Now

by Chelle Hope

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

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

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

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

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

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

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

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

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

18

Disability: Election Promises for the 24%

by Hilary Stace

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

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

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

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

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

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

Labour

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

Greens

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

NZ First

  • Recognize that the disabled are best able to identify and articulate their own needs.
  • Disability support services which are delivered after self-assessment and which facilitate physical and economic independence.
  • Improve oversight of disability care.
  • Improve support for unpaid carers.
  • Ensure adequate funding and support for family home carers under ACC.
  • Ensure infrastructure, transport and information are universally accessible.
  • Review Child Disability Allowance with a view to increasing the rates.
  • Ensure separate accommodation within rest homes for young disabled people.
  • Change student/teacher ratio for vision impaired students from 1:35 to 1:15.
  • Ensure objectives of NZ sign language legislation are fully carried out.
  • Support an independent review of current audit and monitoring provisions.

Māori

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

United Future

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

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

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

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

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

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

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

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

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