Janet Klees
The following are the kinds of assumptions, values and principles that underlie good lives for people with disabilities. They need to be embraced with intention and clarity through many conversations, rather than memorized by rote but without understanding. These can be a reminder to ourselves in our busy lives – as the things that matter and therefore what is worth working towards, safeguarding and finding space to pay attention to amid policies, new regulations, new structures, etc. These can also be a filter through which to decide what is good and worth putting our time toward, and what is taking us away from the places we want to be, the work we want to do and the world in which we want to live. This list is a work in progress as our understanding deepens and our experience grows. This is my current form.
1.Intrinsic Value
This person has intrinsic value, no matter how many or how few people may be able to discern her value. Her value is not given by other people,rather it is an original endowment of all living beings. This is the source of our expectations that this person will enjoy life and life choices similar to those of other valued people around. This ought to be reflected in many aspects of thinking about, planning, offering, respecting, and implementing her life choices.
2.Uniqueness of the Person
This person is a unique being who has gifts, possibilities and assets to bring to this world. This ought to be reflected in the many aspects of her life, so that society benefits from her presence and her contributions.
3. Right Relationship
Regardless of how the rest of society or others in our society may devalue this person, her value is intractable. Therefore, each of us is free to make our own individual, moral decision about entering into a mutual relationship based upon respect and delight. All people – including paid and unpaid support people, family members and neighbours, friends and allies – have the opportunity to consciously make this decision about the very nature of their relationship with this person.
4.A Guiding Vision of a Good Life
It is vital to have and articulate a positive vision for and with the person of a good life which includes clarity about all aspects that all valued citizens hope for in their lives. We cannot achieve that which we cannot imagine. A strong, clear vision is important in troubled times. Moving forward is often a long process of building consensus among people with different ideas and life experiences. Working on shared assumptions and a shared vision is a key starting point.
5.Start with the Gifts and Contributions of the Person
It is important to always start with the recognized gifts and contributions of the person and move forward from there. In contributing to one’s family, neighbours and community, the person always does so from a valued role. The act of contribution demonstrates that theperson is a giver in society, not only someone who needs, takes, and is seen as a burden. Consider both contributions that the person can make (with or without support), but also the contributions of being – so often gifts of presence in a materialistic world than clearly needs the gift of the moment. In all situations, developing roles, emerging relationships, and elsewhere, learn to ask: how can this person make life better for others with their gifts or contributions?
6.Shared Decision-Making
The opinions, choices, decisions and insights held by this person may be expressed in a wide number of ways; these will be best understood and respected by those who love and care for her over time the best. Decision-making is, above all, a human communication strategy. Methods, tools, and strategies of communication that work well for this person will build upon this reality. Thus, shared decision-making – in which people who care for one another make decisions together with care and attention to the voice of the person – is a stronger decision-making base and strategy than efforts to help a person make “independent decisions” or efforts to enact legislation designed to protect a person in limited ways.
7.Lifelong Learning and Expectations
This person will learn and grow throughout their life and therefore ought to be surrounded by such expectations of learning and growing in many different ways. A person’s voice, ways of communicating, life interests and life choices will grow throughout their life. Life conditions need to expect, prepare for this and be flexible to re-working situations that no longer fit old paradigms. People who are surrounded by high and positive expectations will have better options, choices, ideas and a better life than those who are surrounded by limited expectations.
8.Valued Social Roles
This person naturally holds a number of valued social roles in their lives, and with support and encouragement will find other ways to contribute to and be a part of their mutually-rewarding family, neighbourhood and community networks in a variety of other socially valued roles. Identifying current positive roles, paying attention to the connection between role and relationship, and moving into other positive roles based on the person’s interests, talents and opportunities is a lifelong learning path, both for the person and her allies, that needs constant evaluation, adjustment, changes and celebration.
9.Choosing Community
Typical, valued citizens in our communities choose a wide range of options, choices, places, where they spend their time, energy and focus. By virtue of sheer numbers, these options and choices have been polished and brought up to generally high and satisfying standards. Our communities represent an abundance of options to fit a variety of tastes, preferences and styles. Any attempt to re-create the same kinds of options but offered only to people who are devalued in some way (disabled, elderly, homeless, poor, etc.) will necessarily be of poorer quality and variety than the typical and valued options. There will be many good reasons given for the segregated model, but any model built on the devaluing characteristic of a group of people rather than a valuing characteristic (rich, talented, gifted, interests) will be of poorer quality and serve mainly to deepen the negative stereotypes held by the community at large. This increases people’s vulnerabilities, forces them with less satisfying choices and ultimately severely limits their experience of a good life. Avoiding segregated or congregated options of any kind and choosing from among the many community-based options make a serious and ongoing impact on the individual person and ultimately their whole community.
10.The Power of Imagery
How people are seen by others by virtue of their (a) appearance (b) grooming (c) setting or place they are in (d) the role or activity they are seen to hold and (e) the company they keep makes a significant impact on how others view and value them. This needs to be understood and integrated into every day moments and choices at all times. “It’s her choice” is not really true, when a person does not understand the impact of her choice on her life conditions. At the same time, helping a person to make or experience different choices is part of a respectful, gentle and carefully-crafted process. It is important to remember that given a well-supported chance over time to experience the typical, valued, “age-appropriate” event or choice, most people make this their option of choice time after time.
11.Planning Principles
The work of planning – including the plan document, the process and the approach – needs to be: (a) unique and individualized (b) person-centered (c) role-anchored (d) contribution-driven and (e) community-based (f)focused on the fulfillment of human potential (g) consensus-seeking and (h) intentionally safeguarded…rather than group-centered, service or programme-based, congregated, disability-oriented, leader/facilitator-driven, bureaucratic, and needs-driven. The ever-present question to planners and allies could be –“what are the most valued choices/options/ideas available to typical, valued people of the same age in this community? We’ll choose one of those, thank you.”
12.Thoughtful Support
Paid and unpaid support (this is not the same as a friend going out with the person for an evening or an event) to a person who requires it, is to be offered in respect and based in a deep understanding of what is required. Good support is rooted in right relationship as noted above. Support persons must be aware of their unique role. The image, roles, and approaches of supportive persons will always reflect on the individual they support. They are not friends, but may be a bridge to friendship for the person and another. This role requires thoughtfulness, skill, planning, action, moral decision-making and evaluation in ongoing ways. Support roles, personalities and lifestyles need to be thoughtfully matched to the person requiring support.
13. Awareness of Vulnerability
By virtue of our society’s way of devaluing some personal ways of being human (physically and intellectually), this person will be seen or cast into a number of typical negative social roles. These will leave a person vulnerable to rejection, exclusion, poverty, abuse and more. Identifying these current negative roles, and working to mitigate them by balancing them with a variety of strong positive roles AND personal relationship is a lifelong work of vigilance and intentional safeguarding. The impact of imagery is especially powerful in this principle.
14.Focus on Relationship
Personal, committed relationship with valued members of one’s family and community is the single most powerful safeguard against negative effects of the devaluation of our society. It is also a powerful factor in rich and rewarding life experiences. All aspects of planning and support require an unflinching focus on relationship at all times. This begins with a strong, personally-held belief in the unique gifts and contribution of the person. Following people’s interests, identifying possibilities of new and emerging positive roles, understanding what constitutes a fulfilling life are all more deeply effective when relationship is part of their consideration and development.
15. Honour of family and allies
The people in this person’s life hold all or many of the values listed above. They are worthy of respect for their own value and uniqueness and worthy of a measure of understanding in imperfectly moving forward in the best ways they know at the time to support and accompany the person themselves. This is especially true for family members who often represent the longest, strongest personal relationships in the person’s life. As imperfect as are all human relationships, however, the continual presence and often love over time constitutes the single, greatest safeguard in the life of the person with a disability. It is vital that these relationships are first and foremost respected, and secondly, they are built upon in unique and meaningful ways. In the same way, friends and other allies who have been in the person’s life by choice (rather than pay) over time ought to be extended the same respect and understanding.