Partnership as a lived experience: Disabled Persons Assembly
Hon Tariana Turia
Minister for Disability Issues
25 September 2013
Partnership as a lived experience: A
Disabled Persons Assembly Forum
Te Papa, Wellington
I want to acknowledge the importance of the Disabled Persons Assembly who for over thirty years have been working to promote the wellbeing of disabled people in New Zealand.
I want to congratulate and commend Bev Grammer the President, Brendon Murray the President Elect and the ever-energetic Rachel Nobel who is doubling as both our MC and of course the Chief Executive of DPA; for hosting this event today.
I am pleased to see my colleague, Mojo Mathers; the national executive, staff and kaituitui of the Disabled Persons Assembly from throughout New Zealand.
Representatives from the Office of the Ombudsman, the Human Rights Commission, the Health and Disability Commission; Disabled Persons Organisations; key providers and most of all disabled persons and your families.
This is quite a gathering. I am so very excited by the possibilities for this forum for disabled persons to be seen for what you can do and contribute in your community. This is an ideal opportunity to demonstrate the leadership that has driven you in your journey to date; to raise the bar and set the threshold high on the expectations we all have of working together.
These two days are an excellent initiative by which we take on the challenge to understand the lived experience of disabled people and use their expertise to guide our thinking and actions. It is about sharing common ground and yet also not being afraid to speak out about the places we differ.
Most of all it is about inclusion – to do everyday things in everyday places – whether that be at home or at work; in communities or on city streets; in sporting fields; in arts and entertainment or industry.
This event is motivated by the common goal of disabled people being able to have more choice and control over their lives. And just as importantly it is a collaborative hands-on gathering in which people with disabilities are actively engaging with service providers, with government, with one another.
Talking together rather than past one another. We describe this as partnership - learning from each other for mutual benefit; living together; growing a shared understanding of what inclusion means.
The word partnership has been used in many different contexts. Recently Government likes to use the concept of the triple P: a public private partnership to build roads, or schools or prisons. Essentially it is a long term contract between the public sector and a private consortium.
We might refer to a business partnership designed purely for economic gain. We could talk about the Treaty partnership and whether the commitments negotiated in 1840 between our rangatira and the Crown have been delivered upon – another triple P - how have we met the commitment to partnership, protection and participation?
But perhaps the partnership many of us know most intimately is that of the relationship between two people in love – a relationship formalised by the state and endorsed by the commitments of families and friends.
I want to talk about one such partnership as a lived experience – it is the story of a woman called Eleanor. Eleanor’s husband was diagnosed with infantile paralysis, better known as polio, at the age of 39 leaving him without the use of his legs. At that time, polio had no known cure and often resulted in full or partial paralysis and the erosion of one’s motor skills.
This was in a period, close to a century ago, in which often disabled family members were considered unemployable and best to be banished from society. But not so for this couple and their family. With relentless courage and optimism, they began a family-wide campaign of exercise and activity; a programme of restoration and rehabilitation to enable him to resume a full life.
Eleanor lived by the maxim – no one can make you feel inferior without your consent – and together, they crafted out the new plan for their lives. Eleanor’s husband, Franklin, eventually went on to serve an unprecedented four terms as the President of the United States of America. The First Family remain an example of a family who were stubbornly confident about the rights and responsibilities they had to each other, to rethink the fundamentals of living, and achieve the aspirations they set for themselves. Eleanor, herself, later carved out a unique role in our history, helping to shape the United Declaration on Human Rights.
And so, what was her take on the challenge of partnership as a lived experience? She said, and I quote:
“The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.”
Each of us in this room, will have different stories of those who have inspired us to taste experience to the utmost – indeed many of those personal mentors and champions are no doubt gathered with us today. We are at a unique point in history for the disability movement. I am so proud to be part of this journey moving forward, and to be able to share with you the excitement that momentum is building. I know there is much willingness and genuine commitment from government agencies to work together with disabled people’s organisations.
I see the establishment of a strong relationship, which is based on five key principles:
1. Government will engage with
Disability Peoples Organisations as representatives of
2. We involve the right people, at the right time, in the right work
3. We value the contribution of each party and make it easy to engage
4. We will be open, honest, transparent and creative in our engagement with each other
5. We jointly learn about how to engage with each other.
These five principles are not just a nice to have. We are not talking about the illusion of inclusion.
We need the direct insight of disabled people’s experiences to inform what government agencies do. These two days are opportunities for you to take the conversation to the next level. I want to commend everyone present, for being willing to listen and more importantly to learn from each other. We must all be sure that the investment we each make is truly creating a difference in people’s lives. This is not just a case of activity for activity’s sake.
The best way for government and its agencies to know what the priorities are for disabled people’s organisations to tell us – directly.
And we must listen and be prepared to be open and willing to engage. As many of you will know we have committed to involve disabled people’s organisations in updating the Government’s Disability Action Plan. An updated Disability Action Plan is due to come back to the Ministerial Committee on Disability Issues in December 2013.
There is also a commitment for the Chief Executives’ Group on Disability Issues and the Independent Monitors to monitor progress with implementing the updated the Disability Action Plan. Once this is underway, we will also be working with disabled people’s organisations to better understand the capability and capacity challenges they face in just existing, let alone actively engaging with government agencies.
The concept of challenge is nothing new to many of you here. Every day is a challenge to exercise the full rights of citizenship, on an equal basis with others. Part of the significance of this forum, however is that Government is stepping up to the challenge; which in itself emerges out of the ratification of the United Nations Convention on the Rights of Persons with Disabilities in 2008.
Government is raising its own expectations about what it can and must do to address the entrenched attitudes and behaviours preventing many disabled people from living an everyday life and exercising their rights of citizenship. This has been the enduring message of the New Zealand Disability Strategy, the Disabilities Convention, and of course what disabled people and families tell me.
It is, if you like, taking up the opportunity for all of us to willingly become champions of the human spirit. The Ministry of Social Development’s Think Differently campaign is supporting national and community projects to promote positive attitudes and behaviours towards disabled people. To be successful, this has to be a whole-of-community, whole-of-nation approach.
Everyone, at all levels, is responsible for changing their attitudes and behaviours, and systems and policies, so that New Zealanders can freely go about their lives without unnecessary limitations in their way. I want to say that I am very pleased that government agencies are already valuing the involvement of disabled people. For example, the Enabling Good Lives demonstration in Christchurch, which aims to transform the disability support system in the longer term, has a local advisory group – half of whom have lived experience of disability.
And I am very positive about the proactive responses of the Ministry of Education and the Ministry of Social Development to issues raised by the Human Rights Commission, regarding New Zealand Sign Language. Deaf people are at the core of work underway to make the education system more inclusive and responsive to Deaf students, and identifying longer term mechanisms to promote and maintain New Zealand Sign Language.
Enabling Good Lives, is, at its heart, a message to set our horizons higher; to taste experience to the utmost, to reach out eagerly and live life to the full. For a service provider it may be as simple as changing the question from ‘what services can we offer’ to ‘How can we be of service to you’?
For Government it may be about imagining what does success look like? How will we know we are an inclusive nation? How can we achieve better outcomes, earlier?
And most importantly, this partnership will be seen to have delivered when disabled persons are encouraged to have ambitions; to have the capacity and the ability to take charge of their own transformation.
I wish you much success and joy in talking together, listening together and learning from one another in the dialogue about partnership as a lived experience.
Tena koutou katoa.