KIDS' VISION - A vision for disabled children, their siblings and their families. Created by Philip Patston for DPA Auckland "Kids' Vision" is a vision for disabled children and their families. It is an outcome of the Kids' Vision project, the first to emerge from the Partnership relationship between the Disabled Persons' Assembly and Ministry of Health Disability Issues Directorate in Auckland. www.kidsvision.net.nz 0800 372 473 ISBN 0-473-08352-3 Copyright (c) DPA Disabled Persons Assembly (Auckland) Inc., 2002 Copyright (c) Philip Patston, 2002 First published in 2002 by Disabled Persons Assembly (Auckland) Inc. PO Box 46-256 Herne Bay Auckland Aotearoa New Zealand Design and layout: Jenny Reid "Having a disability is something special. We want to be treated as ordinary people. Others don't treat us as people - they treat us as though we are all from a mental institution. We can do things and stand up for ourselves." "We have to move on. The time is right, we have analysed things and know what is going to happen ..." ‹ Young disabled people from Mt Roskill Grammar School "Unless we can imagine something we cannot undertake to achieve it." - Edward de Bono from "New Thinking for the New Millennium" Welcome to a future world. A different world. A better world. Perhaps even the best world for disabled children, young people and families. Welcome to a world where disability is embraced as an opportunity for development, awareness, learning and the global development of humanity - where the journey between ability and disability is cyclical - a natural manifestation of the perfect order of things. A world where the wealth invested in families by disabled children is celebrated. Where disabled people are proud to be perfect along with everyone else. In this future world, disability is accepted, valued and encouraged. As you read this vision you will notice that it does not always reflect "what is" now and that, sometimes, it departs from "what is" now quite distinctly. Keep an open mind at these times and remember that this vision suggests a design of "what can be". It is 9am at a Conceptual Learning Centre. A group of 14, 15 and 16 year-olds are beginning the first session of a 10-week Development Path called "Constructive Thinking around Love, Relationships and Parenting". The group nominates a facilitator and begins brainstorming the areas of learning they wish to pursue. The third point they raise to be explored is the benefits of having a disabled child. Afew years later, a fifth-year trainee Well-being Facilitator is majoring in Child Potentiality at the Well-being Learning and Development Centre. He is one of 100 trainees from around the country who have just arrived at a core one-week Development Path retreat run by the Disability Pride Project. He can't wait to attend the training. A team of highly skilled disabled facilitators will run the retreat. He glances at the programme, skimming eagerly the menu of workshops, seminars and one-to-one coaching sessions: Disability as a family learning experience The culture of disability Disabled creativity The soul purpose of disability Loving someone disabled. His eye stops at the workshop that will change his and others' lives: Introducing parents to their newborn disabled infant with love, respect and dignity. A couple arrive at the fourth session of an antenatal programme. They have already learned about foetal development, breathing techniques, constructive visualisation, stress management and natural pain relief. This evening, a disabled woman and a disabled child with her parents present a session on the joys of disability in families. They also talk about the support available to ensure families benefit from the learning that disability offers and give detailed information on how to contact the Disability Pride Project. The couple leave the session open to the possibility that their twins might be disabled, amazed at the development in support opportunities since they discussed disability at their Conceptual Learning Centre seven years ago. Two months later, twins - a girl and a boy - are born in the City Well-being Centre. The parents are excited and expectant during the birth. At the antenatal class they learned how to cope with the many natural configurations of birth. The twins both have significant impairments. The Well-being Facilitator ensures the twins are safe and introduces the perfect babies to their parents, explaining the nature of their impairments. They talk for some time about the possible challenges that may lie ahead. The Wellbeing Facilitator encourages the parents to make contact with the Disability Pride Project for support. The parents look at the twins and then at each other. They think of the future, knowing it will be hard, fulfilling work, confident in the knowledge that they know where to go for support and assistance. The twins will grow up knowing that their disabilities, though significant, are secondary to the importance of who they really are. Equally, each will learn that their disability is a unique factor in their identity. They will be proud of their difference, as well as connected in their similarity to other people. They will understand that they are here to teach and to learn. In what they do not have, they reflect what the human race has. In who they are, they reflect what the world is to become. Growing up, the twins develop a sense of the potential that their disability offers them in the future. They take advantage of the networks established for them and their family by the Disability Pride Project. They have an abundance of information available to them through the Internet, through other disabled people and through friends, relatives and Well-being Facilitators, both disabled and non-disabled. All of them share an interest and pride in the disability culture and disabled lifestyle. The twins aspire to do whatever has meaning for them. They live alongside their disabled and non-disabled peers in complete harmony. They are supportive of their non-disabled peers and their peers are equally suportive of them. In the meantime, the twins' parents feel supported in a community that includes and values everyone. They are proud of their identification with disability culture and feel comfortable in the disabled lifestyle. Their lives have changed, and yet they realise they simply see the world in a different way. Their experience of the world has altered and, through the support and guidance of the Disability Pride Project and other Constructive Support Organisations, they value equally what they have gained and what they have lost. Their journey has been enhanced with options to explore and resolve any grief and sorrow associated with expectations of a future with non-disabled children. Because of their experience of growing up and learning that disability is a natural part of life, any sense of loss is fleeting and enriching. The couple have chosen to have more children, and the twins now have two non-disabled siblings. The siblings are born into the warmth and love of an accepting, encouraging and empowered family. In a community that values the right to choice, the parents negotiate community-based childcare to enable them to work as well as raise a family. The siblings understand, support, and are supported by, the twins and their parents. They feel a supportive bond with the disabled twins, a reciprocal support that is grounded in love and respect. They understand the significance of the twins' disability, but feel no need to cure or improve their condition because they know they are all perfect beings. They find comfort in the acceptance of diversity embodied in the community. As four brothers and sisters they are happy and enjoy each other and their disabled and non-disabled friends. They all attend the local Conceptual Learning Centre, which is organised to cater for both individual and collective learning styles. They are aware of the equal significance of their connection with each other and the difference embodied by their disability and non-disability. They know that they are responsible for themselves and need not take responsibility for the twins (or anyone else for that matter), because they have experienced this through the modelling of their parents and the community. Yet they are equally comfortable responding to the needs of others appropriately and lovingly because others do the same with them. Through the Disability Pride Project the siblings and twins attend separate groups, where they talk with peers about their purpose, their dreams and their occasional fears. The groups mix regularly to share and benefit from each other's learning. Similarly, the twins' parents share, support and celebrate with other parents. Because of the support systems around the family, the siblings feel empowered and confident sharing their own questions about being in the world. They know that this sharing will enhance the wisdom of the family and increase the love and respect they feel for each other. For the parents, bringing up two disabled children has been a welcome challenge. As they look back they are proud of their own achievements, as well as those of their children. As they look ahead they wonder what the next learning will be. With their support network, they schedule and plan time to reflect and self-nurture. They organise and trust friends and support people to help look after the children once or twice a week when they go out together as a couple. The children look forward to times at the Leisure and Creativity Centre where they attend a variety of afternoon, weekend and week-long programmes. Their parents are confident that the Centre understands and respects the creative needs of all children and young people. The Centre designs a continually developing programme of recreational, musical, artistic, self-developmental, communication and creative opportunities. It is accepted and valued that all children and young people - disabled and non-disabled - are involved in the design process. When holidays come around, sometimes the family go away together and at other times the children attend programmes at the Centre, leaving the parents to spend time alone. The Centre is proficient at meeting the social and emotional needs of the twins and their siblings equally. Thus, the parents and children have the opportunity to develop socially both together and separately. The family have a constant flow of information and support available to them, co-ordinated by the Disability Pride Project. A co-ordinator and other support people are constantly available as a resource to them, due to the valuing level of funding and resourcing. Since the twins' birth, the family have had access to a disabled mentor who offers support and guidance and shares their own experience and learning. Having had several opportunities to meet with Well-being Facilitators with an interest in Child Potentiality, the parents have a complete and in-depth knowledge of the nature of the twins' impairments. The Facilitators regard disability as part of the natural diversity of human beings and recognise the support requirements of the family. They are motivated to work with families in an inclusive, holistic way because they too know the value of disability and have been coached by disabled people in the understanding of disability culture and the disabled lifestyle. Their coaching has included an emphasis on effective communication, reflected in their ability to respond appropriately, sensitively and constructively to the questions and comments of all family members. The local Constructive Support Organisation offers practical, useful assistance. It runs efficiently and effectively on a system designed to be flexible and respond quickly to the changing requirements of the community. Central to the support offered is the recognition of the need for balance between "now-care" and "future-care". Together with the family, the Centre establishes timely, proactive access to housing alterations, technology, transport and home assistance. The Centre co-ordinates holistic intervention such as osteopathy, homeopathy and natural healing, as well as ensuring the family maintains a constructive future vision for all its members. Intrinsic to the support design is the need for enough flexibility to meet the needs of the family's cultural, spiritual and lifestyle values. The possibility of a sudden change in the twins' impairments or family circumstances is acknowledged and planned for. The support is designed to promote a constructively inclusive lifestyle so that, wherever possible, the family's choices and requirements are addressed in a manner that meets their needs. In recognition of the right and entitlement to an equitable quality of life, any additional assistance needed because of a change in circumstances is provided. In recognition of social responsibility, the family contributes occasionally to the Disability Pride Project with money or with time. The sense of security, support and trust the family feels enables them to cope confidently with unforeseen circumstances. Because the community in which they live values diversity, the family's responses to these circumstances are affirming and constructive. As they encounter emergencies, sleeplessness, emotional reactions and other challenging situations, the parents expand their repertoire of responses. They take responsibility for always making the choice between responding alone and asking for help. They sometimes make mistakes and value those mistakes as opportunities for growth and learning. They understand that they choose the judgement they put on everything that happens - from negative to constructive - and, similarly, they choose the meaning they assign to each experience. The twins and their siblings learn, adopt and adapt that philosophy throughout their growing lives. As they mature, they further develop a sense of who they really are. They become aware of their aspirations to achieve, both in a career and in the qualities they embody. They talk about their options for work - they could be radio announcers, artists, newsreaders, computer programmers, singers, actors or models. They realise they need useful learning experience, support from friends and family, help to cope with their disability-related requirements and funding for their needs. They know there are things worth achieving apart from paid employment. An abundance of funding and expertise around technology and mobility are available to them. They value technology for its ability to give them freedom to express what they think and feel, thereby maximising their inclusion in their family and in the community. They are also free to choose between autonomy, interdependence, independence and dependence, knowing that the financial resources and support people of their choice are available to them. Theirs is the right to ask for help whenever, however and of whomever they choose. They have gained this powerful awareness by observing role models - their mentors and other disabled people - with whom they have had close and ongoing contact throughout their lives. These people have extended them and encouraged them to push the bounds of their potential. A warm, supportive network surrounds them and, needing to develop potential as all young people do, they also feel the freedom to take risks. This freedom motivates them to explore new experiences and expand their opportunities. They begin to dream of moving out of their family house into their own homes, living with the people that they choose for companionship and intimacy, while employing or accessing through the Constructive Support Organisation the people they choose for support. The twins are part of the community, proud of being disabled, and strong in their identity. But most significantly they are happy. Their siblings are happy. Their parents are happy. If this sounds like a dream - it is. "The future belongs to those who believe in the beauty of their dreams." Eleanor Roosevelt ABOUT THE AUTHOR Best known as a comedian, Philip Patston has a Certificate of Qualification in Social Work and a Diploma in Applied Social Studies from the Auckland College of Education (1990). His professional background includes telephone counselling, group facilitation and training, and social research. In 1992 Philip toured the USA on a Winston Churchill Fellowship researching technology for people with speech impairment. He worked at the Human Rights Commission for four years until 1998 when he left to start his own business, Diversityworks. During his four-year stint working at the Human Rights Commission, Philip embarked on an additional career in comedy in 1995 and has become an established professional comedian. In 1999 he won the Billy T Award for commitment and contribution to New Zealand comedy, was named "Queer of the Year" and had a featured role in Shortland Street. In April and May 2000 he travelled to Australia to perform in the Melbourne International Comedy Festival and the High Beam International Disability Arts Festival in Adelaide. In August 2001 he performed in Vancouver at the kickstART! International Celebration of Disability Arts and Culture. In 1998 Philip attended an international disability rights and youth leadership programme in Oregon, USA. He returned seeing a need to encourage more young people with disability into leadership roles in New Zealand to ensure that leadership in the disability community passes and strengthens from one generation to the next. At the end of 1999 he received funding from Waitemata Health Ltd to run a six-month pilot mentor programme for young people with disability. The pilot programme, which matched ten young people with ten adults with disability, finished in September 2000. Philip has been working with DPA Auckland in partnership with the Ministry of Health since the begnning of 2000. Document1