Window on Tomorrow Conference

May I begin by greeting everyone in the languages of the realm of New Zealand, in English, Māori, Cook Island Māori, Niuean, Tokelauan and New Zealand Sign Language.  Greetings, Kia Ora, Kia Orana, Fakalofa Lahi Atu, Taloha Ni and as it is the morning (Sign).

May I then specifically greet you: Helen Melrose, Chairman of the Muscular Dystrophy Association of New Zealand and your fellow board members; Chris Higgins, Managing Director of the Association and your fellow staff and the organising committee; Dr Victor Dubowitz, Emeritus Professor of Paediatrics at the Imperial College London and fellow guest speakers;  Distinguished Guests otherwise; Ladies and Gentlemen.

Thank you for inviting my wife Susan and I to attend the 50th anniversary conference of the Muscular Dystrophy Association of New Zealand, Window on Tomorrow.

As Governor-General, it gives me great pleasure to add to the welcome to the international visitors to Auckland and to New Zealand.  I trust that as well as attending the conference, that a number of you will also have the opportunity to explore some more of our beautiful country while you are here.

I have been asked formally open this conference, but before I do, I would like to speak about the importance of the Association's work in the wider framework of New Zealand's present approach to disability.

For 50 years, the Muscular Dystrophy Association of New Zealand has worked assiduously to support those living with neuromuscular conditions and their parents, families and friends. 

While it is known as the Muscular Dystrophy Association, the organisation brings under one umbrella those living with a wide range of neuromuscular conditions.  

While the causes of each condition are different-some are genetic, some occur almost randomly-they all affect either the muscles or the nerves that control the muscles.  None of the more than 40 conditions is curable and all are usually progressive, although symptoms can vary in severity and timing.

Working together to a common cause seems me to be a sensible arrangement.  In the crowded marketplace of ideas and issues, all charitable organisations struggle to be heard.  All are inevitably competing for the same increasingly limited sources of funding and sponsorship.

Singly each of the neuromuscular conditions the Association covers affects a relatively small proportion of the population. But I am advised that together they affect about 1 in 1000 people.  

The Muscular Dystrophy Association is committed to creating a better, independent future for its members, working to ensure that as much as possible they can live "normal" lives.

That is also the approach of the New Zealand Disability Strategy adopted by the New Zealand Government in the year 2000.  The strategy set a new standard for participation by those with disabilities. 

For a long time, decisions central to the lives of people with disabilities were made for them, with little opportunity for any meaningful input. 

The Strategy, based on a partnership between the New Zealand Government and people with disabilities, envisages a society that is continually working to enhance full participation and which highly values the lives of people with disabilities.

The Strategy has been given practical expression in many ways, including, for example, the slogan "nothing about us without us" and legally recognising New Zealand Sign Language as an official language.  It also reflects New Zealand's earlier decision in 1993 to outlaw discrimination on the grounds of disability and to establish the Office of the Health and Disability Commissioner the following year.
 
New Zealand has established an Office for Disability Issues and I see from your programme that the MP for Auckland Central, Nikki Kaye, will address the conference on Saturday on behalf of the Minister for Disability Issues, Hon Paula Bennett.

New Zealand signed the United Nations Convention on the Rights of Persons with Disabilities in March 2007 and then ratified it in September last year. 

In May last year, I had the honour to accept at the United Nations in New York the Franklin Delano Roosevelt International Disability Award on behalf of New Zealand. 

The award, made jointly by the World Committee on Disability and the Franklin and Eleanor Roosevelt Institute, reflected a sustained commitment to address the needs and wellbeing of New Zealanders who live with long-term impairment. New Zealand is committed to the principle that everyone is born equal in dignity and worth.  Everyone is entitled-as a human right-to live a life to the fullest extent of his or her abilities.

So what do those words mean in a practical sense?   I suspect those who do not live with a disability often fail to appreciate the hurdles that the modern world places in the way of many of those with a disability.

Someone who is blind or vision impaired might have the right to vote, but that means little if they cannot complete the ballot form. A person in a wheelchair might have right to freedom of expression and association, but it means nothing if they cannot enter a building to participate in a public meeting.  

But while much has been achieved, much more remains to be done.

But just how much has been achieved is equally evident as the Muscular Dystrophy Association celebrates its 50th Anniversary.

What began initially as a support group, where parents and caregivers could share their experiences and knowledge over a cup of tea or coffee, has grown into a respected organisation within the New Zealand health and disability sector.  The calibre of the speakers and attendees at this conference speaks volumes of the respect with which the organisation is held, both nationally and internationally.

The Association now employs a small hard-working paid staff that works with an army of members and volunteers of people.  Together they provide a wide array of services to those living with neuromuscular conditions and their parents, caregivers and other loved ones. It also advocates on behalf of those with neuromuscular conditions and undertakes important promotion and education work in the wider community.

As well, I am advised that through its own Research Foundation, the Association is also working alongside organisations and scientists throughout the world to seek better treatments for the care and management for those living with these conditions. 

All the threads of support, promotion, advocacy, education and research come together to, in the theme of this conference, give "a window on tomorrow." 

It therefore gives me great pleasure then to congratulate the Muscular Dystrophy Association of New Zealand on reaching this significant milestone and to declare the Window on Tomorrow Conference officially open.

And on that note, I will close in New Zealand's first language Māori, by offering everyone greetings and wishing you all good health and fortitude in your endeavours.   No reira, tēnā koutou, tēnā koutou, kia ora, kia kaha, tēnā koutou katoa.