KIDS' VISION READERS' GUIDE - Understanding the 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 The aim of the Kids' Vision project was to enable disabled people to participate in the formation of a strategic vision for disabled children. The Auckland Disabled Persons' Assembly held a number of focus groups in the latter half of 2000 with disabled children, their siblings and their parents. We asked them about their past and present experiences and how they would like things to be in the future, both for them and for other children and families. Common themes of greater participation and inclusion, better communication and service co-ordination, better information and more human support were expressed in each of the groups. The vision has been developed from the results of consultation with, and the involvement of, disabled children, their siblings and their families. More than 70 organisations were invited to nominate disabled children and siblings to attend focus groups divided into three age groups: five to eight years, nine to 12 years and 13 to 16 years. Focus groups for parents were also held. In total 150 disabled children, siblings and parents were consulted during the Kids' Vision project. This included 49 disabled children and 28 siblings between six and 16 years, as well as 15 disabled secondary school students between the ages of 16 and 18. In total 58 parents were canvassed or attended focus groups. Only two families identified themselves as Maori and only two as European/Pakeha. Others did not specify. Drawing on the focus groups' feedback on past and current experiences of, and future ideals for, disability services, disabled adults have written "Kids' Vision" from a disability perspective. An interim draft was circulated in the disability sector, gaining mixed feedback. Consistent across most respondents was praise for an inclusive vision that, whilst ambitious in nature, had a real acknowledgement of the past and the present. Comments included - "Recognition of the holistic environment whilst being inclusive of the whole family" "Nice to hear the word inclusion" "The future is for disabled" "Holistic understanding" A second popular theme of praise was a recognition of the extensive use of positive, con- structive language in the vision. There was also an acknowledgement that "Kids' Vision" sought to gain insight into the opinions and beliefs of all, and was not exclusive or selective. The key negative element in the responses was a perception of a lack of detail in the vision. A number of respondents clearly wished to see the project move from that of a "concept" into a more specific plan of action with concrete ideas of "how to get there". While there is no doubt that this is needed, it is not the function of "Kids' Vision". "Goals seemed vague" "Practicalities not clearly defined - needed practical progressive stages" "Warm, fuzzy, politically correct overtones within the document along the same lines as the Disability Strategy - again idealistic and not realistic given other factors such as funding issues and the attitudes towards disability of the wider community." Other complaints centred around a perceived lack of acknowledgement of the grief some parents, families, and supporters have lived through. These people clearly found the vision too idealistic. "I read your story about the couple with twins - what a load of rubbish. Not one of my parents ever reacted like that to the news that their child was born with a disability - their world fell apart. It takes years and years of grief to work through the pain. I see the tears when they come to pre-school, the tears yet again when they go to school, and so on. While they love and would not be without their child, no one wants a special needs child." The third significant complaint was the observation that there was an over-representation of "white middle class New Zealand" or, rather, an under-representation of Maori and Pacific Island values and attitudes. Admittedly, a white middle-class New Zealander wrote the vision; however, the informing consultation was representative of a cultural and ethnic mix, including Maori and Pacific people. The use of Maori or other cultural words, phrases and ideas was considered, but we thought there was too much of a risk of, at best, seeming token or, at worst, getting it wrong. "Kids' Vision" is written in the language of its author; the content arose from diverse consultation. The vision is presented in two parts: 1. A readers' guide, which introduces the designed vision 2. A designed vision, which expresses the vision in the context of an ideal world. The Auckland Disabled Persons' Assembly would like to thank the many children, parents and disabled adults and others who have contributed to making this vision a reality - at least on paper. During the time in which this vision was developed, the New Zealand Disability Strategy was launched with the vision of "a society that highly values our lives and continually enhances our full participation". We hope "Kids' Vision" builds on the Strategy's vision, offering a glimpse of a future for disabled children and their families that some may never have imagined. Now that it has been imagined, we look forward to creating it. Philip Patston April 2002 REALITY AND THE DESIGNED VISION: Essentially, "Kids' Vision" is a story. It is designed intentionally to communicate far-future, constructive ideals, rather than current or near-future realities. The designed vision purposefully uses language that is positive and affirming to clearly construct an idea of what can be, rather than leaving room for interpretation by vaguely saying what shouldn't be. Further, the designed vision uses progressive concepts that reframe existing structures in society, such as schools, hospitals, the medical profession and services, simply because some of the ideals expressed could not exist in the context of these current paradigms. The purpose of taking this approach to creating a vision for services for disabled children and families is three-fold. First, it allows us to remove ourselves from the current climate of service delivery and consider not where we want to go next, but where we want to end up. Like a journey in a car, knowing the final destination helps plan the route, rather than aimlessly turning corners hoping one gets to where one wants to go (and maybe ending up where one doesn't want to be). Secondly, employing an element of idealism offers insight into some philosophical premises upon which a future ideal must be based. Like a grand house built on unstable foundations, any seemingly well-designed structure built on unsound philosophy will be, at best, illusory and, at worst, dangerous. The designed vision questions, and offers alternatives to, some fundamental beliefs not only about disability but also about human nature and society in general. As such it asks the reader to suspend judgement and consider that some of the beliefs and values we hold as humans are not absolute truths but simply truth as we know it. Finally, the designed vision plants a seed in the minds of all who read it and, in doing so, begins a process of creation. In the course of reading and thinking about the designed vision - and people reading the draft said that they had to read it several times in order to absorb some of the new concepts and ideals - we hope people will discuss and debate the concepts. We further trust that, following thought and discussion, people will act in some way that reflects their new thoughts and words, in turn provoking even more new thoughts, words and actions. While the designed vision is not real in the context of the present, it can be real in our minds. And as we move forward with that new version of reality in our thoughts, we can begin to make it part of our future words and actions. An old Sioux story goes as follows: The Creator gathered all of Creation and said, "I want to hide something from the humans until they are ready for it. It is the realisation that they create their own reality." The eagle said, "Give it to me, I will take it to the moon." The Creator said, "No. One day they will go there and find it." The salmon said, "I will bury it at the bottom of the ocean." "No. They will go there too." The buffalo said, "I will bury it on the Great Plains." The Creator said, "They will cut into the skin of the Earth and find it even there." Then Grandmother Mole, who lives in the breast of Mother Earth and who has no physical eyes but sees with spiritual eyes, said, "Put it inside of them." And the Creator said, "It is done." OVERARCHING PRINCIPLES: The designed vision contains overarching principles that reframe many socially constructed beliefs about disabled people. Over time, humanity has changed its perceptions of women, indigenous people and ethnic minorities, in turn improving social conditions for these groups. Similarly, humanity can change its core beliefs about the experience of impairment and disability in order to truly effect social change for disabled people and families. Disability can be a positive experience Disability is often framed as a negative experience, but disabled people report positive aspects, such as insight into human nature, clarity around prioritisation of goals and appreciation of the meaning of life. The designed vision offers a change to the way disability is treated from a traditional medical standpoint. It challenges the deficit-focused, human-tragedy notion and replaces it with a nurturing, valuing, positive frame. It dispenses with categories and diagnoses, and uses the generic terms disability or disabled to reflect a shared experience rather than an abnormality. It assumes that a disabled person's life is valuable. This acceptance and fearlessness allows all prospective parents to be open to the possibility that their children may have an impairment. There is a continuum between disability and non-disability Society sees people as being either "disabled" or "non-disabled". The designed vision acknowledges a continuum of disability, along which people move throughout life, with the majority of people lying in the middle. Pride in being disabled As consciousness around disability culture and the disabled lifestyle develops, disabled people globally are developing a pride in their belonging to a unique group of people with distinct norms, values and beliefs. Being disabled is no longer something of which to be ashamed. Disability is a social construct Impairment is something an individual experiences in their body. Disability is a social construct - the product of an individual's experience in society and of society's experience of people with impairment. For the purposes of this document, therefore, we have used the term "disabled" to refer to the experience of being disabled by society. Disabled people have something to offer By introducing the notion that the experience of disability has value, the designed vision suggests that disabled people, rather than simply being the recipients of care and benevolence, have valuable insight, perception and experience to share with others. This is in contrast to today's perception that disabled people are a burden on families, on the state and on society in general. Applied practically, this embraces the concept of mentoring by disabled adults of disabled children and their families. Mentoring around disability issues is prevalent in the designed vision as a community-oriented, inclusive and effective method of support for families. Even today, mentoring has proved to be beneficial and is common in other countries such as the United States. Mentoring is an easily learned skill (more an attribute) which requires no particular level of education. Families experience disability culture and the disabled lifestyle An important premise underlying the designed vision is that the entire family, in effect, acquires disability and lives the disabled lifestyle by having a child (or person) with disability in the family. This requires a complex adjustment for all family members, including acquiring a social perspective of disability and adapted values and norms (for example, choosing to avoid visiting inaccessible places). Family members are supportive of each other, adopting a normative, "we're in this together" ethic, instead of isolating the disabled person by making them feel "individually different". This in turn changes the emphasis from the disabled person and family being "wrong", to their needing accommodation and support from the wider community. Disability support needs to be designed The definition of the term "to design" is: to work out or create the form or structure of something... in a skilful or artistic way... for a particular purpose. Encarta(r) World English Dictionary In other words, design is a creative process that uses the resources available to designers combined with their ability to arrange those resources in a way that is useful or pleasing. So in our designed vision, disability support is designed in the same way that cars, clothes, advertising campaigns and computer networks are. There may be some aspects of the design that are standard and repeated. The support may be tailored in some way to the person's needs, or it may be completely designed from scratch. The design process requires creative, lateral thinking with strategic and some technical skills on the part of the people doing the designing. The designer or design team may be the person or family needing the support, friends, other supporters or facilitators employed specifically for the purpose. Emotional support exists in an accepting community Perhaps one of the more "far-fetched" ideologies of the designed vision is that it assumes that the community in which the family lives understands, accepts and values disability and disabled people. Though unrealistic in the context of today's society, community and individual valuing of disablement are probably the most powerful and change- provoking concepts in the vision. Paradoxically, valuing disability renders the issue moot. People with green eyes, for example, do not need specific emotional support to deal with stigma, discrimination and lack of support. This is because society values people with green eyes. In the designed vision, parents do not require emotional support specifically because they are parents of disabled kids. That support exists intrinsically within the community. They do, however, meet with other parents to share experiences of parenting, in the same way that students with green eyes may join a study group. Practical support exists in an accepting community Notwithstanding the above, the designed vision strongly advocates practical support and community responsibility for meeting the disability-related needs of disabled children and families. This goes hand in hand with the parents' ability to accept assistance (both paid/professional and voluntary), to trust the people who are assisting and to value their own need to have times when they are not meeting their children's needs. A constructively inclusive lifestyle is ideal A constructively inclusive lifestyle is an ideal outcome for a support design. It is constructive in that it is "carefully considered and meant to be helpful [and]...based on what somebody infers from other statements or circumstances" (Encarta(r)). It is inclusive, so that the person, for whom the support is designed, is included in the family and the community. It also ensures choice and autonomy over every part of the process and outcome, including the choice not to be inclusive, as long as the choice is "carefully considered and meant to be helpful". Finally, as a lifestyle, it reflects the way of life of that person, their family and their culture. Disabled children need to dream freely In the designed vision disabled young people consider their future careers. They are encouraged to consider all their options, even occupations that, practically, they may never achieve. In today's world, kids with disability are discouraged from dreaming "unrealistically", in case they have unreal expectations and are disappointed. In the future world of the designed vision, any disappointment is discussed openly and resolved. REFRAMED CONCEPTS: Because some of the ideals expressed in the designed vision could not exist in the context of the current structures in society, new institutions and roles have been created. "Schools" become "Conceptual Learning Centres" Conceptual Learning Centres offer learning and development that is not readily available in today's schools. The Centres teach concepts rather than subjects, including the value of diversity (including disability), the importance of communication, principles of honesty and integrity, the purpose of rebellion, etc. The most distinct differences are that the Centres work on the belief that kids may contribute to deciding what they need to learn and that, rather than being categorised by age, children are encouraged to choose between group and individualised learning environments, depending on their needs. Children are also coached to meet the learning needs of the group, including those who have needs that are disability-related. Performance is not judged individually as it is today. "Medical Schools" become "Well-being Learning and Development Centres" Rather than solely teaching the science of medicine, Well-being Learning and Development Centres encourage in learners the development of their own well-being, which in turn develops their ability to do the same with others. Centres recognise the disability-non-disability continuum and therefore include this as a compulsory Development Path. "Subjects" become "Development Paths" Subjects are known as Development Paths, to reflect a journey of learning rather than a predetermined course of teaching. "Doctors" become "Well-being Facilitators" Well-being facilitation replaces concepts of curing sickness, treatment, surgery, etc. Well-being is believed to be an individual and collective responsibility - Well-being Facilitators, therefore, are trained to assist people to manage the process of their own wellness. (It should be noted that the Well-being Facilitator in the designed vision has been deliberately described as male to promote a vision of an aware, perceptive man working with disabled people and children, as well as to counter the traditional over-representation of women working in these areas.) "Paediatrics" becomes "Child Potentiality" The medical term paediatrics is replaced by the more affirmative term Child Potentiality. Every child is seen to have potential. Well-being Facilitators who specialise in Child Potentiality are trained to recognise and promote that potential and to coach parents to do the same. "Hospitals" become "Well-being Centres" Like Well-being Learning and Development Centres, Well-being Centres encourage an awareness of the development of people's individual and collective responsibility for their own well-being and work on their ability to develop and maintain wellness. "Community Centres" become "Leisure and Creativity Centres" Leisure and Creativity Centres are dynamic community collectives designed to promote and develop the importance of leisure and creative activity. Centres cater for children, families and adults regardless of disability. Centres offer support for families to facilitate leisure and creativity in the home and away from it. This includes parents' need for leisure time separate from children (in contrast to the present concept of respite care). "Service Providers" become "Constructive Support Organisations" Constructive Support Organisations replace the traditional notion of service providers. They do not have an ethic of providing a service, rather they help people design and acquire support in as flexible and creative a way as possible. NEW CONCEPT: the Disability Pride Project The Disability Pride Project is a corporate-sponsored national organisation dedicated to the celebration and promotion of disability. The Project is governed and run by disabled people, families and supporters committed to the vision of an enabling society. A proportion of its funds come from corporate sponsorship. It is considered and consulted as the leading authority on the constructive inclusion of disabled people in society. Its functions are many and varied, including awareness and skills training, emancipatory research, innovation and design. ACKNOWLEDGEMENTS Special thanks to: Brent Harpur, cartoonist, for helping us make the focus groups fun for kids; Pat and Andrew from Take One Productions for capturing the focus groups on film; Rehab Plus for donating the venue; Glenys and Northland DPA for organising the focus groups up north. Warm thanks to: Sue Sherrard, Karen Tait, Russell Vickery, Christine Smith, Donna Hemi and Barry de Geest for being gentle but firm after my first draft; Russell Shipman and Rachel Mackintosh for editing and proofreading; those who commented on the interim draft; Susan Coombs and Jenny Reid for creating the funky design. Significant appreciation to the Northern Locality Disability Issues Directorate of the Ministry of Health, in particular Jeff Richardson and Therese Weir, for having the vision and commitment to work with us. And finally, unreserved gratitude to the disabled children and young people, their siblings, parents and families who attended the focus groups, without whose candour this vision would not have been inspired. Thank you for sharing your lives, your triumphs, your pain and your souls with us. They live in this vision and combine to create the perfect future for generations to come.