MERRY CHRISTMAS AND A HAPPY NEW YEAR

Wow, it's the end of 2004! Where has the year gone?

In this edition of DPA Bites, you will find a report on the National Assembly and Conference. All of those of us who were there will agree with the organizer's claim that it would be memorable. And for those who weren't there, I have the photos.

Months of hard work by Martin Sullivan and his team culminated in a great event at the end of October. Many thanks to them for pulling it all together for us.

2005 is looming as a busy year for DPA. Nationally, we begin with a series of capacity building fora for regional assemblies, we will prepare for the General Elections and finish the year with our AGM. All this will happen in conjunction with the usual day-to-day things.

Lorraine, Wendi, Robert and I thank you for your ongoing support. We hope that you have a great Christmas and New Year break and we look forward to working with you next year.

Gary Williams

Conference Report

Well, our biennial National Conference, The New Zealand Disability Strategy: making a world of difference? has come and gone once again. From the feedback we have received, the general consensus seems to be that it was a very successful conference. It now falls on me to acknowledge who and what contributed to its success. First, the most important component of any conference is the delegates who attend; they can make or break the occasion. So I want to acknowledge and thank all delegates for your attendance and contributions - your participation made this conference. Pat yourselves on your backs! Also, the sterling work done by Footprints must be acknowledged. Indeed, they were the oil in the machine, ensuring the smooth running of the conference, the magnificent food and who could forget the Saturday evening 'futuristic' event? I would also like to thank the panellists and workshop facilitators who voluntarily gave of themselves to make this conference the success it was. Also, a special vote of thanks is due to those NEC members who contributed mightily.

For me, there were three outstanding features of the conference which I will recall in order of occurrence. First, I thought the President's speech was extremely well crafted, inspiring and a cause for great optimism for the current and future direction of DPA under his stewardship. Second, the keynote address by Associate Professor Christopher Newell certainly provided much food for thought by drawing our attention to the contradictions in government policy, whereby on the one hand we have the progressive NZDS, but on the other we have a disabling immigration policy which discriminates against 'costly' migrants such as himself on the basis of impairment! His concluding point that we can have all the disability strategies, laws, and ramps in the universe, but until society regains the communitarian ethos which welcomes and includes all people, we, disabled people, will remain other, outsiders. The Sunday morning sessions were my third highlight of the conference. It was invigorating to hear us discuss and debate our issues in such an impassioned, thoughtful and intelligent way. Powerful and empowering stuff!

Finally, work on the report from the workshops is continuing and we hope to have it into the NEC by Christmas.

Martin Sullivan (Convener, LOC)

From a "euphemistically challenged other".

Associate Professor Christopher Newell addressed the Assembly as keynote speaker. Christopher is from the University of Tasmania and acknowledges that being both an Australian and an Academic are significant disabilities! However he had many pertinent comments to make regarding the NZDS and below are but a few. For those who would like a copy of his full address please contact DPA.

To the memory of those activists who have gone before us in their struggle to promote human rights for people with disabilities

To the ongoing and unsung stories of people whose daily experience is the denial of their human dignity

To future generations, in the fervent hope that this conference will help to foster a society which embraces all.

…."Governments right around the world are currently engaged in exploring how they can "manage" the problem of disability, sometimes however with only the veneer of human rights… The strong support for such a UN Convention is an enormously important tangible expression of the real values of the New Zealand Government and it's commitment to fostering an approach to disability which is about action rather than mere words……Yet, as I read through the NZDS I couldn't help reflecting that for all of the rhetoric of rights, and the installation of wheelchair ramps, the development of advisory committees, and even legislation to the contrary, right around the world today people with disabilities face a daily devastating reality: we are the other, outside of the nice, normal and natural moral community".

…."We are now objectively "the disabled", the disease labels so important in a world dominated by medical and charitable discourse, or perhaps in a way which inspires simultaneous hysterical laughter and projectile vomiting on my part: "differently-abled" or "physically challenged". In a variety of corporations we are following the American trend to move from "equal opportunity" to "diversity management"…….Even in terms of "making a difference" is disability really affirmed in terms of difference or indeed is disability as difference a devastating experience of otherness? For I still know what I am - not just "other" but now a euphemistically challenged other".

…. "We are engaged in serious business, not just about the past and present but also engaged in shaping the sort of society that we want for the future. I would suggest that in evaluating it from the perspective of those who live with disability we need to evaluate how far we have come in terms of rights, as well as asking where we want to be, and daring to dream of the unthinkable".

…. (I discuss the NZDS)…with enormous envy as these sorts of positive moves are currently not present in Australian society where the Office of Disability - or indeed the Public Service in general is not a place I would look to find a senior manager with disability, and where our Disability Strategy should be called "The Australian Strategy for Keeping Crips Disabled", with an emphasis on disability services, as Government recognizes that ultimately disability is a big business".

…."As I considered the reports written by the New Zealand Government about the Disability Strategy several things struck me…. In the first place, there is no literature by people with disability evaluating the New Zealand Strategy. For all the welcome inclusion of a message from DPA every year, there is no extensive report card by an organization like the DPA evaluating how well the Strategy is going, identifying the problems, and praising and critiquing where it is due. Secondly, there is no literature by academics with disability - or indeed any academic - which actually explores in depth the New Zealand Disability Strategy".

…."Likewise, I want to suggest that in general we need to ask whether or not the Strategy delivers the cultural change which is necessary to move "disabled people" from other to us. Here there is one profoundly important step, which we need to applaud, and that is the New Zealand Sign Language Bill and the profoundly important recognition of New Zealand Sign Language and Deaf culture. As someone who has long lobbied politicians with regard to disability issues I wept as I read the cross-partisan support and the recognition of the social and cultural nature of disability".

…."Whilst we are always prepared to look at how much disability support costs, and ask how we can afford it, why is it that as a society we never ask how it costs society to disable us? To require us to be on welfare in the first place? Indeed, even more provocatively, we talk about how much it costs to provide for people with disabilities and yet we never seem to ask for a justification of the perks of office associated with being a CEO or dare I even suggest a Member of Parliament. Disability is still conceptualized in terms of net cost to society, rather than those of us who have something to contribute to society being needlessly disabled via structures and dominant ideas about our deviant minds and bodies".

…"Another profoundly disturbing aspect of how, despite the rhetoric to the contrary, the status of people with disabilities as other remains not only unchallenged but is increasingly perpetuated and magnified as to be found in the world of biotechnology. Of course, the moment I mention that word many people with disability- and many citizens in general - mentally step back, saying "Oh that's technical, how could we possibly understand or participate?" Yet, the disability sector needs to be at the forefront of not just discussing but indeed challenging governments to explore the lived values found in legislation to do with biotechnology".

…"I could not help reflecting that there is a significant contradiction between the recognition of Deaf culture and the recent introduction of the Human Assisted Reproductive Technology Bill. For example, in these debates there is usually a suggestion that sex is a social reason but somehow or other disability is a medical reason, made value neutral via the use of the medical terminology. Screening on the grounds of sex or race are rightly socially abhorrent, but not on the grounds of disability?

…"Frankly, as someone long involved in these areas I am tired of discussing these issues until I am blue - indeed black - in the face. We have discussion after discussion highlighting significant issues for people with disabilities and yet as ever the biotech juggernaut rolls on, sustained by the rhetoric of choice without actually exploring the problems associated with choice and individualism, and how disability is constructed as the antithesis - the enemy- of choice. Indeed usually it is our lives and bodies which provide the justification for what is now a very lucrative business around the world. It is in these bioethical arenas that we discover the real values of society".

…. "Likewise I notice the New Zealand debate to do with euthanasia, something I would suggest will recur time and time again. Strong leadership is required from government in these areas. Precisely because people with disabilities live with the very conditions and situations whereby we become members of categories who may, and indeed should, die are covered under euthanasia legislation. Sadly, all too often, euthanasia advocates are not interested in taking on board the reality of disability - precisely because our lives are seen as exactly what they want to avoid. We are the opposite of choice and freedom according to non-disabled values. I say this as someone who once desperately sought death from a health professional in really appalling circumstances, and am always grateful for a response which supported me as a person rather than just viewing this as an understandable request".

…."As I come to review the disability strategies around the world, time and time again I wonder where the plans are for appointing people with disabilities to be members of important government boards, heading up government authorities dealing with disability and health questions. Where, dare I suggest, are the plans in New Zealand for a funded Chair in Disability Studies within a New Zealand University, with that chair occupied by a person with disability? What a long way we have to come before we start seeing that in such circumstances, rather than being the epitome of the challenge to the academy, there is a significant need for people with intellectual disabilities not only to participate in all aspects of university and tertiary study but indeed to be employed as academics. When, I wonder, will we see an Associate Professor with intellectual disability appointed to an academic position where an essential requirement is knowledge of what it is to be in receipt of services, to be the despised other, to be so far away from the norm of what it is to be nice, normal and natural?"

…"Sadly, in some areas New Zealand government policy seems to have taken the leaf out of the book of a variety of other countries around the globe, and especially the abhorrent extremely selective immigration practices of Australia. I used to hope that it was only Australia that had such appallingly restrictive immigration laws. I can but reflect on how profoundly disappointed I was to learn this year that the government that proudly claims it's success with regard to disability strategy is in it's immigration selection procedures provides screening for those who live with disabilities. I know that as a person with disability I certainly wouldn't pass the restrictive test for admission to Australian society and wonder if I would pass the test for New Zealand society as well. Hence, the true lived values of society and governments become apparent when we discover in so many different aspects of public policy not just contradictions but people with disabilities being effectively second-class, non-citizens, un-people".

…."Hence, today I have certainly shown why it is that, for all the benefits of disability strategies, unless we structurally address some of the deep causes creating people with disabilities as other, we will continue to know that dark, devastating experience that no amount of wheelchair ramps and accessible toilets will adequately tackle. We will continue to be the euphemistically challenged other - those that society talks about, rather than listening to, without valued authoritative roles in every aspect of society".

"Ladies and gentlemen, thank you for the privilege of being here with you today, the opportunity to show why it is that I should be immediately deported back to Australia, as I conclude in suggesting the fundamental challenge that we face today and tomorrow: moving people with disabilities from the exotic other to us, part of the New Zealand community".

Ruth Dyson addresses the Assembly

The DPA Conference was privileged to have the Honourable Ruth Dyson, Minister for Disability Issues, address the assembly. The following are key points from her address:

She formally launched the fourth progress report on the Disability Strategy at the National Assembly after it was tabled at Parliament the day before.
Statistical snapshots show that disabled New Zealanders have lower levels of educational attainment, lower employment incomes, a poorer general health status, less choice in housing, and higher unemployment rates than the general population. Many are caught in a cycle of deprivation, and whilst this is a difficult cycle to break, the Minister is confident that the New Zealand Disability Strategy provides the best long-term plan for so doing.
There have been major achievements within the rights of citizenship, legislative change, the fostering of leadership and encouragement of on-going debate, the improvement in government capacity to deal with disability issues and the encouragement of participation of disabled people in all areas of life.
Particular changes have been made in the area of employment with a special thrust being that of working with young disabled school leavers' transition into employment, and the restructuring of Sickness and Invalid benefits so that people can now trial work for more than 15 hours a week for up to six months, without losing their benefit entitlement.
She agrees with our President Mike Gourley for an extension of the Like Minds Like Mine campaign to educate New Zealanders about all areas of disability and thus promote an attitudinal change.

National AGM business

While much of the focus was on the Conference, there was some AGM business transacted.

Most importantly, Marilyn Baikie was bestowed with Life Membership of DPA.

The National Executive Committee (NEC) for 2004/2005 is President Mike Gourley (Wellington), Vice-President Marion Wellington (Taranaki) and committee members Linda Beck (Christchurch), David Corner (Dunedin), Eamon Daly (Christchurch), Beverley Grammer (Whakatane), Anna Jameson (Dunedin), Wendy Randall (Wellington), Lorna Sullivan (Tauranga), Ken Talbot (Timaru), Tony Voss (Paraparaumu) and Dot Wilson (Invercargill).

Bronwyn Hayward (Wellington) was also elected but she has since resigned.

The following remits and proposals were passed:

That all service provider organizations, including Workbridge, continue to be monitored to ensure that the services they provide meet the needs of disabled people.
That DPA at both a national level and a local level foster close co-operation between Mental Health Consumer groups and DPA.
That the BIA, in consultation with DPA, the Motel and Hotel Association and local territorial authorities, strengthen the requirements for low-floor showers in motels/hotels so that the provisions for seating and angle bars in showers are enforced.
That this Assembly of 2004 endorses the work of the NEC in bringing the issues associated with the wages, allowances and conditions of employment for support workers to the attention of the appropriate bodies.
That DPA be seen to take a strong stand now in demanding that government honestly implement the New Zealand Disability Strategy in respect of Objective 7, long term support centered on the individual and Objective 8, quality living within the community.
That in taking such a position DPA gives this issue strategic priority in its work over the 12 months to ensure further erosion in the type, range and quality of supports does not occur.
That DPA maintain pressure, coupled with the support necessary to bring about supported living as the principle support option, however that might be defined by the individual concerned.
That in addressing issues, DPA seeks alliances with other advocacy organizations such as People First and Parent to Parent with support from provider organizations that can demonstrate consistency of perspective with DPA objectives.

Report from the National Executive Committee

The out-going NEC met in Palmerston North before the AGM. Here is a summary of their discussion:

Representation Issues - including Media Policy

The role of the CEO is clear. NEC members can be delegated to various roles by the CEO who also has the power to co-opt at the regional level.

Repositioning of DPA

DPA needs Memorandums of Understanding with other disability advocacy organizations so there is no overlapping of activities.
DPA needs to re-assert its position as an advocacy group in New Zealand. The various ministries are constrained by monetary limitations and means that they will try and find the advice that suits them.
DPA needs a high profile media person to communicate with people and the various ministries so that we can provide advice which is untainted by commercial considerations.

Other issues

The low pay scale of home care workers - This "de-values their clients" and needs discussion at both the NEC's December meeting and within the regions.
Men's Caucus - This was on the agenda but discussion was deferred until the next meeting.
Executive Limitations Policy - In delegating responsibilities and authorities to the CEO, the NEC has adopted executive limitation policies which describe what the CEO cannot do. The NEC reviewed some of the policies and made minor amendments.
Capacity building - The CEO has secured funding for capacity building in regional assemblies and will contact regions shortly to arrange their participation.
Non-financial members - The CEO tabled DPA's membership numbers. Although the NEC members expressed concern at the number of non-financial members, the CEO re-assured them that it was caused by DPA's administrative procedures.
International issues - The CEO reported on his attendance at the Pacific Disability Forum meeting in Fiji and his involvement with the United Nations' Disability Convention development process in New York. Marion Wellington and Beverley Grammer reported on the Disabled Persons International Summit in Winnipeg.

Congratulations

Congratulations are in order for Dot Wilson on her election to the Southland DHB, Barry de Geest to the Auckland DHB and Sara Georgeson appointed to the National Health Committee. Well done people!

Hot Items

Quality and Safety Project

This project, run by Disability Services Directorate in the Ministry of Health, has just finished. While it began looking at the situation for workers in the aged-care sector, it was expanded to include home support workers for disabled people younger than 65. Surveys were done, not just of the workers, and their employers, but also of the service users.

National Plan of Action on Human Rights

In September the Human Rights Commission completed a stocktake report about human rights in New Zealand. It is using that to help it draft an action plan that the government will own. The draft is nearing completion so that it can be commented on.

Disabled Persons Employment Promotion (Repeal & Related Matters) Bill

In October and November, a select committee heard oral submissions on this Bill to repeal the DPEP Act. The repeal has long been sought by disabled people. At the hearing, many sheltered workshop operators protested vigorously while DPA and other like-minded allies spoke strongly in favour of the Bill. The select committee has now decided to delay its report. If the bill is to proceed it will need active support from disabled people.

Nelson Baby Killing

Media coverage of this situation has been largely focussed on the stressed father who killed his baby. There has been almost nothing about how disabled people feel that it appears to be OK to kill a disabled child. DPA's National Secretariat has heard a lot of disabled people express fear, outrage and frustration. Disabled people will now need to plan where to from here.

Air New Zealand

Mediation with Air New Zealand about their "no lifting" policy continues.

Residential Tenancies Act

This Act was passed in 1986 and, since then, there has been considerable change to patterns of renting. The Act is being reviewed and submissions on the discussion document are due in February.

Inclusive Communities

Inclusive Communities - Guideline for Councils and District Health Boards is a document created by DPA (New Zealand) as a partnership initiative with New Zealand CCS.

This document:

Describes general principles, key concerns and specific actions for Councils and DHBs to work on in partnership with disabled people and their families/whanau.
Provides valuable insights and reminders, whether you are an elected member of a Board or Council, a staff member, a community advocate or part of the community.
Draws on the collective wisdom of many individuals and organisations.
Provides a basis for local disability organisations to include issues from their own area.

How to use Inclusive Communities

This document is a tool for producing more effective regional relationships between disabled people and their families/whanau and Councils and DHBs. It describes the collective views and aspirations of disabled people and their families/whanau throughout New Zealand. In particular, this document draws on the experience and ideas of DPA members over more than two decades. It will continue to evolve along with our relationships and understanding.

The vision of organizations like DPA and CCS and the vision of guiding documents like the New Zealand Disability Strategy and the To Have An Ordinary Life report can only be achieved and made real by national and local government and DHBs working in true partnership with disabled people and their families/whanau at national and local levels. There is much to be done if disabled people are to be fully included in our communities.

Before Elections this document should have been used by:

DPA regional assemblies and members, CCS Local Advisory Committees (LACs) and members, and other disability organisations to influence candidates standing for election.
Candidates, to inform their disability policies and commitment to disabled constituents, and to seek endorsement. .

Between and After Elections this document should be used by:

DPA, CCS and other disability organisations to remind Councillors and Board members of their commitments.
Members of DHB disability services advisory committees (DSACs) and Council advisory groups to take to and use at meetings.
Councillors, Board members and staff to implement policies for a fully inclusive and non-disabling region.

Any Time

This document can be used at any time to increase understanding of the concerns and aspirations of disabled people and their families/whanau.

'Inclusive Communities' is available as a PDF file to email. Large print and a few hard copies are still available from the project coordinator.

Also available is a local concerns template designed to accompany the main document. Sending a copy of this to the project coordinator will help to track any developing trends and gaps. The project Coordinator is Dot Wilson dotwilson@xtra.co.nz, phone (03) 214 4265

DPA New Zealand