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 ![[----------------Horizontal Rule----------------]](/webart/hrule.gif){kind=small}  Article 1. What and Who is a Family?Cultural, ethnic and religious groups define "family" differently. While it is true that family life is always enacted against a cultural backdrop, it is the family, not the cultural group that is primary in people's lives. This, of course, is true for individuals who use AAC and those who support them. Why then aren't we studying families? Let's begin by considering two questions–what is and who is a family? What is a family? This definition captures the essence of the family. Families are big, small, extended, nuclear, multi-generational, with one parent, two parents, and grandparents. We live under one roof or many. A family can be as temporary as a few weeks, as permanent as forever. We become part of a family by birth, adoption, marriage or from a desire for mutual support. A family is a culture unto itself, with different values and unique ways of realizing its dreams. Together, our families become the source of our rich cultural heritage and spiritual diversity. Our families create neighborhoods, communities, states, and nations. 2 There is an inherent vulnerability in the strength of families. [They] are much like a house of cards. Each is supported by and depends on the other. When stress affects one card, the entire house may lean. And, sometimes the house falls. 3 Families are systems. A system is a "set or arrangement of things so related as to form a whole."4 Many factors influence a family system: the ethnic and cultural background, the stage in the family life cycle, environmental events, external factors, individual relationships and the personal and collective experiences of family members. Individuals in a family develop roles, rules to live by, communication patterns, ways to negotiate and solve problems and methods for completing tasks of daily living.5 Families provide social support and sustenance. They share commitments and responsibilities. Beyond that, they are contexts for learning and growth and have a particularly decisive influence on the social and emotional development of young people.6 Who is a family? A family is far more than a collection of individuals who share physical and psychological space.3 Individuals traditionally enter a family system through birth, adoption or marriage. Entrance also occurs by invitation and agreement. The nature of each individual's involvement with the other and with the family collective exists along a continuum–somewhere between enmeshed with and disengaged from one another.7 Most roles we assume are family roles (infant, toddler, child, adolescent, sibling, adult living with parents, wife, husband, in-law, significant other, mother, father, uncle, aunt, grandparent, elder and the infamous "black sheep.") Even roles external to the family (student, professional, boss, friend, lover, advocate, teacher, gang member) require characteristics and commitments similar to family roles. Family systems Family systems are dynamic. They are influenced by both external and internal factors. For example, world events affect the "what" and "who" of family systems. Consider the impact of technology. It has revolutionized communication, travel and access to information. It is extending the life span of individuals. Technology is broadening our sense of the world community and expanding our concepts of what and who a family can be. Dealing with stress Virtually no family escapes stress. Stress is negatively associated with the well-being and integrity of families and the physical and mental health of individual family members. Stress may be defined as: A particular relationship between individuals and their environment that is appraised by the person as taxing or exceeding his/her resources and endangering his/her well-being. 7 Stressful events include birth, death, financial problems, moving, divorce, illness and dealing with a disability. Stress also can occur when external roles take precedence over family roles. Despite our lack of systematic attention in AAC to family issues, other disciplines and areas of practice are carefully studying family dynamics, family systems, family stressors, dysfunctional family responses, positive coping behaviors and more. Within general conceptual frameworks of stress and coping, researchers are examining the adaptation of persons who have family members with disabilities. Psychosocial theories of family systems, stress and stress reactions can provide the field of AAC with a partial framework within which to contemplate the needs of AAC families.8-10 Professionals have been shown to be more effective collaborators when they understand family grieving, life-cycle issues and episodic loss reactions.7 One model applied to disability issues is Kubler-Ross's five-stages of grieving.11 She observed the process of coming to terms with death as a linear progression moving through denial, anger, bargaining, depression and finally acceptance. Family members of persons with disabilities report they experience similar stages, but out of order, several at a time, all at once or not at all.3 Adjustment to a disability–particularly across the life span–is not a linear experience. Rather, it is episodic. AAC families When individuals have severe communication impairment, everyone is affected. Frankly, it's hard to imagine a disability that is more likely to affect a family's dynamics, because communication and socialization underlie the development of meaningful relationships and the establishment of social networks. We must learn more from families before we go too much further. First, we must learn to listen. Tables I and II (not included) highlight examples of real life issues. Both are snapshots. Both capture communication issues important to individual family members and the family system. Both make it clear why family dynamics can underlie (or undermine) the success of AAC approaches.
This article appears in ACN Volume 7, # 6. You may order this issue by clicking on Ordering Home Page Online Ordering 
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