Social Change and the Power of Families

E. Anne Hughson


Abstract

This article suggests that, traditionally and collectively, families' active engagement remain at the heart of the social and cultural reforms needed for family members with psychiatric disabilities to live in community. A long-term grassroots initiative from the community living movement in Alberta, Canada is described as an approach that effectively engages family leaders to collaborate and mobilize the capacity of communities to realize large and small transformations necessary to a more hopeful and inclusive society.

Introduction

Strengthening the capacity of communities to include people with psychiatric disabilities takes intentional action from many sectors. When families collect and organize to ensure that their sons and daughters remain in the community with the supports they need, a more hopeful future is possible. This article seeks to describe the vision, principles and strategies that family advocacy organizations can use to realize the dreams they have for all their sons and daughters.

Families are at the heart of an inclusive life in community. They understand the necessity of ensuring that their family member has a good education, a real home, real work, opportunity to contribute to community, unpaid meaningful relationships with friends, valued social roles and the love of family. Families know that it takes both individual and collective long-term action to prevent their adult children from having a life defined by a psychiatric disability. Too often individuals are devalued and marginalized by the labels given and subsequent forms of treatment that lead to congregated and segregated placements in hospitals or institutions. Such settings relegate a loved one to the role of 'client' or 'patient'. The valued social roles of brother, sister, son, daughter, aunt, uncle, friend, worker, student, professional, lover, husband, wife, etc are fractured, lost or forgotten. Families, however, have the memories, the connections and a profound interest in safeguarding these valued roles and relationships that are the essence of human experience.

In this article, I argue that it is the tradition of families as valued members of society, and their capacity, to support individuals with psychiatric impairments to remain as contributing members of their communities. The potency of families connecting to other families to bring about more successful treatment, support and safety for their sons and daughters is evident in many countries.

Since the mid-1900s in the western world, we have turned the care of people with psychiatric disabilities over to a labor intensive, professionalized, institutionalized and/or community-based systems of paid caregiving. Questions of social policy, economics, politics, moral obligations, personal and institutional commitments have led to many difficult ideological choices and debates amongst medical professionals, academics, politicians and researchers. The question of who should support people with mental health disorders and under what conditions this will take place also speaks to the heart of families and communities.

To re-focus these debates, I have chosen to explore the role of the family, the collective voices of family associations and the outcomes that have been achieved by families who advocate for a good life for their sons and daughters. What follows is an overview of those elements that sustain the engagement of families with each other to lead the way in fostering, mentoring and sustaining more inclusive communities. It has been my observation that when families, with their existing long-term vision, vested interest and love for their family member invest in learning the competency associated with the roles of an advocate and a leader, they become powerful forces for positive change. Together in the community living movement, families acknowledge the experiences of rejection and use it as a framework for recognizing what is at stake when their sons and daughters are excluded from society. Their relationship with professionals, policy makers and government funders has shifted as they advocate for change.

A very brief review of the history of the community living movement in Canada is presented here as an illustration of how families shape government policies, monitor the quality of human services and shift cultural values, attitudes and practices. This history suggests that a family driven social movement that values all life, stands up for the inclusion of all its members and intentionally supports individuals to contribute to the community does have the capacity to change our world. Our values and attitudes are fundamental to complex and sometimes unpredictable outcomes but we have seen that certain kinds of interactions are more likely to result in transformation than others. People who desire to make a difference even in the smallest way begin to change when they engage in ideas together, take courage from each other and pay attention to the world around them. They may not have perfect clarity or certainty but strength lies in engaging in the complexity and staying engaged. By paying attention and staying engaged we can pull down the walls that hide us from each other.

My Background

In a series of projects with the Moscow Research Institute of Psychiatry (MRIP), I co-facilitated intensive workshops focused on exploring the value of group processes necessary to the development of relevant community-based mental health services and the strengthening self-help organizations for people with psychiatric impairments and their families. These collaborative teaching and learning opportunities created an 'applied research' setting for reflecting on the conditions for change that make important differences for families and their communities. In effect, these reflections arise from a yearning to include one of the strategies at the heart of most community reforms related to social movements - harnessing the vision of families to organize and act - a phenomenon to which history will attest.

Increasing the opportunity and access to a 'good' life can be the vision of both professionals and families. But it will be individuals and their families who will experience most directly the impact of the actions needed to actualize the vision of community presence and participation. As Kendrick (1995) points out, the family is an authoritative witness to the performance of professionals and systems and may have special (though not necessarily exclusive) insight into events that take place. The observations that follow on the pathways of struggle have been garnered from engagement with the community living movement and, in particular, my involvement in family leadership development with a community living advocacy organization in Alberta. This aspect has shaped my belief in the core role of family leadership as an active ingredient for social change.

At the outset, it is useful to remember how strong family organizations in many countries were linked to the broader phenomenon of closing institutions and the growth of the international social movement associated with community living. This is but one aspect of the role of families in the Canadian community living movement. Below I have included a brief overview of the history, vision, principles and strategies of a family advocacy organization, a description of the development of family leadership capacity, and a description of the family networks that are nurturing the capacity for effective partnerships with professionals, government funders and policy makers in making social change in Canada. My purpose is to describe what we have learned with the hope that social activists, who are imagining and creating change in the community mental health system in Russia, may analyze these ideas and transform them for their own use.

A Brief History

For those less familiar with Canadian history, the 'community living movement' most frequently refers to the establishment of support for people labeled 'developmentally disabled' or 'intellectually disabled' to live in community. In fact, however, most people with developmental disabilities have always lived with their families in the community even during the period of institutional dominance.

The dominance of public institutions as a form of care for people grew out of the facilities built in the late 19th century in Canada-- some were first used as institutions for the mentally ill, while others were first sanatoriums for those with tuberculosis or hospitals for veterans from the war. Many of these facilities were refitted to serve people with developmental disabilities. Large institutions prevailed until the 1970's in most of the western world. In 1981-'82, according to Statistics Canada, 28,783 people with intellectual disabilities lived in 'special care facilities'. Although some larger institutions still persist today in Canada, they are much reduced in number and status. The vast majority of persons with intellectual disabilities live in community-- as friends, family, colleagues, neighbors, co-workers, and fellow citizens. Equally true however is the fact that about 28 larger institutions for individuals with intellectual disabilities remain in 6 of the 10 provinces and 2 territories of Canada. By 2009, one province intends to close 3 institutions for 1,000 people, while a remaining 2,778 people still live in such larger institutions, confined to facilities and lifestyles not of their choosing. In their place, a system of community services has been developed, radically altering the nature of supports to people with developmental disabilities more consistent with the historical tradition of living with families and in communities.

This social change to community living has been a trend throughout North American culture and often was talked about as the 'deinstitutionalization' of the former patients of these institutions/hospitals. Typically the people involved were adults, with most not returning to their families. They were supported to live in 'group homes' and to go to vocational training centers where they were supposed to learn the skills needed to find a job. This radical downsizing of institutions for the developmentally disabled and their rapid replacement with community services was linked to the broader social movement occurring in the 1960's and 1970's of 'deinstitutionalizations' into community life for people with mental health disorders, often with insufficient support. So the community living movement associated with family lead activism was frequently overshadowed and equated with the mental health or psychiatric deinstitutionalization of the same historical period. There is a strong link, but they have followed distinctly different paths.

Family Advocacy and Leadership

Influenced by the civil rights movement, the women's movement and other social justice causes, social and structural changes were underway for people with disabilities in Canada as evidenced not only by deinstitutionalization, the development of schools and community rehabilitation agencies by parents but also the expansion of family driven national, provincial and local advocacy organizations dedicated to social justice and community living. Alongside these parent organizations, consumer led organizations were forming around impairment specific interests. The emergence and influence of these organizations has now been characterized as the drivers of the disability rights movement. Overall, national non- profit advocacy organizations have assumed a significant role in Canadian society (Enns & Neufeldt, 2003).

The community living movement, represented by a national parent organization, has now survived for 50 years. The nature of the family movement as distinct from the other consumer-led organizations has been the topic of recent research as policy makers, consumers of services, families and professional advocates learn more about leadership in the context of social change. In general, what distinguishes the national body, as a federation is the belief that families from across the country are at the heart of the Canadian Association for Community Living (CACL). CACL recognizes that its mission cannot be achieved unless families of people with intellectual disabilities are valued, given status, and acknowledged for the central role they play in ensuring dignity, rights, and inclusion for a family member with a disability. As a family-based organization, CACL is also committed to working closely with and supporting an organization for people with intellectual disabilities, People First of Canada, in its efforts to build a strong voice - often referred to as the self-advocacy movement.

Although there is much to say about the different characteristics, goals and visions that exist between consumer driven and family driven organization, my focus is to describe the intentional activities of one provincial family advocacy organization. The Alberta Association for Community Living (AACL) is a provincial grassroots organization (NGO) that holds the same passion, drive and determination that originally seeded the national association and continues to work in concert with the national body to renew its passion and unite families across the country to reduce exclusion and segregation and increase belonging and opportunity. Sharing the story of re-examination, rejuvenation and strengthening of this provincial family advocacy organization is prompted by the ideas, questions and actions of Russian families that I met. These families echoed the same dreams and hopes for their sons and daughters or siblings.

Setting the context: the grassroots of community

As a result of significantly restructured policies and programs, many Canadian social activists have suggested that we have to "return to grassroots organizing in our sites of struggle." The call for such action must go beyond rhetoric. The "grassroots" are families of individuals with developmental disabilities and the "sites of struggle" are in those places meant for social inclusion in our communities. For family advocates, users of social programs and other citizens concerned with social reform in local communities, the social policies and the quality of implementation are ultimately informed by social values. But how do the "grassroots" organize in the face of the politics of our day?

The social phenomenon of organizing collective family action is presented here as a 'case study.' The AACL as a family based advocacy organization intentionally set out to learn more about leadership development so that it might revitalize the family social movement. Families framed the leadership challenges. They wanted to know how to sustain effective programs or influence changes in social policies and asked who would take up the different roles that might influence the social and political landscape. It followed that an organizational plan was designed to gain insight into what families can and must do to critically evaluate what is available and what needs to be done to improve programs and supports when their children risk social exclusion, devaluation and limited opportunities for a meaningful life in the community.

When this initiative began in Alberta , the government had implemented a new system of regional governance for health services, services to adults with intellectual disabilities and services to children with disabilities and their families. Community governance brings policy making and the management of outcomes of that process to the level of local communities. As Wharf & McKenzie (1998) observe, it is seen as an attractive strategy to many both left and right of the political spectrum. For the neo-conservative, community governance means reducing the size and significance of governments by returning the responsibility for helping individuals and families to churches and neighborhood and charitable organizations. For those who believe in democratic socialism, community governance does not represent an abandonment of state responsibility for human services, but rather affords the potential for involving more citizens in governance issues. It is important to clarify that community governance does not apply to provision of income security and medical coverage, which is a provincial and federal responsibility (see article by Neufeldt & Toews). These reforms altered the development and provision of supports and services to children and adults with developmental disabilities and affected the future of community inclusion. Families had to imagine the complexity of influencing 18 regional authorities, each with their government appointed boards, making regional decisions that directly affect lives of children and adults with developmental disabilities on a day-to-day basis and long into the future.

Families provide the essential cornerstone to community inclusion by raising their child with developmental disabilities as a valued and loved family member. It is families who choose to set their child on a path to community inclusion or not. In order to choose inclusion, however, families must have access to supports which enable their child to grow up at home and to supports that enable their participation in community activities from pre-school through high school years. Regional authorities are directly responsible for the funding of services to adults with disabilities and provision and determination of family supports and family support policies. These regional authorities are directed by government appointed boards comprised of "politically connected community members," who may have little knowledge of either the needs of families who have children with developmental disabilities or the challenges to achieving community inclusion. Ironically, these authorities operate under legislation and policy rhetoric that embraces the principles of community inclusion. However, members typically have limited understanding of inclusion and in many instances create policies and practices that either inhibit or contradict the principles. For example, some still operate residential institutions.

At that time, there were no established or effective regional organizations of families to respond to the eighteen authorities. This missing aspect of the community living movement effectively meant the voices of families were more easily silenced, overlooked or ignored. This realization mobilized AACL to examine better ways to influence the regional authorities. It required harnessing the wisdom and knowledge grounded in the experiences of family and community life and nurturing/organizing active networks of families at the local levels. Investment in leadership renewal and innovation in times of change was called for. Family advocates and leaders, some of whom were engaged in earlier de-institutionalization efforts and resulting community based rehabilitation programs, now had to renew in their commitment to monitoring the very human service systems they helped create.

The leadership development project

Underlying the leadership development initiative was the belief that if families became engaged in current social and political realities, they would be less vulnerable to false hopes and confused agendas. We know that collectively families find the source of their hope and leadership in the love of their children, not the vicissitudes of the social sciences, political and economic ideologies. Therefore, it is argued that, collectively families can intentionally represent and bring clarity of vision to their day-to-day interactions, in their neighborhoods and at the tables of political influence in their regions.

Over the last seven years this project has brought together over 150 individual family members, self-advocates and allies, in 7 cohorts, have participated in the continuing development of a long-term leadership renewal strategy (Uditsky & Hughson 2000). Each cohort of approximately 25 people gather for five weekends over the course of each year. All participants are encouraged to bring all of their family together for the weekend. Youth support and childcare is provided. The individuals are invited from across Alberta, specifically chosen from both rural and urban areas without regard for the diagnostic label attached to the developmental disability. Families who were new to AACL as well as parents who have lengthy histories are invited. This means younger and older parents are brought together, a radical shift from the typical practice of artificially separating families by the age of their offspring, degree or cause of developmental disability. The series is forever shaped by the thoughtful exchange of those with many years of experience who engage in passionate conversations with one another. The source and energy comes from the love and hope for their children. The necessity for advocacy and leadership is understood immediately. The content of the sessions are uniquely affected by the shared stories of the broken places in each other's hearts. Discussions over the five weekends cover the following topics:

  • the exploration of the roles and responsibilities of values-based leadership;

  • the history of the community living movement;

  • the examination of inclusion across the life-span;

  • the nature and strategic aspects of networking;

  • strategies and values inherent in personal and systems advocacy;

  • personal inventory of strengths and capacities;

  • critique of service practices, trends and innovations;

  • analysis of legislation and social policies;

  • strategies for taking action; implementation.

Five intensive weekends over one year

From the beginning, the weekends develop a natural rhythm or pattern of mutually expected activities. The first evening, families meet the childcare staff and weekend activities are planned. Once the children are settled, a proposed schedule for the themes/topics is discussed and occasionally a "guest" (invited because of their long track records as advocates and teachers) is welcomed. The first evening of each weekend allows families to becoming acquainted or reconnected, catching up on the struggles, successes and events that fill the lives of each family. After an early Saturday breakfast together, the chosen topics are addressed, including facilitating time for small group discussions, readings, videos and personal reflections. The third day continues with the same large and small group format and finishes by mid-day to allow time for families to travel home.

Once a cohort has completed the series, the previous groups are invited to the next 'reunion' of previous participants. This weekend retreat is held in the fall prior to the start of the next series. This has become an important time to build collective strategies for increasing community capacity and examining the impact of leadership efforts across the province. It is a time for reconnection at the provincial level. It also creates an opportunity to encourage some families to return to facilitate small group sessions in the next series. The value for mentorship of new families is clearly demonstrated by these volunteer commitments. This investment of individual families keeps the series alive.

Each year the clarification of assumptions, beliefs and collective wisdom provides an ethical compass to guide the next leadership series. The following elements have become evident in our thematic analysis of the first seven years:

  • leadership skills develop from taking the time to build relationships that link people with common visions and different experiences and perspectives;

  • families want to engage in dynamic interactions that are rooted in a clear vision of inclusion and a deep awareness of the difficulties that come from the rejection of people with disabilities. They have the wisdom to share stories and learn from each other;

  • no "packaged curriculum" can be used to teach each other the "right and wrong" things to do and to resolve the issues we face. Instead, there is flexibility and time to hear from each other, to look at different perspectives, to compare and contrast different issues, to ask hard questions, to clarify our dreams and hopes and to look to others who have modeled "good" leadership;

  • when we choose to take time to step outside of the fast paced lives we lead, to think, to reflect, to feel our way through the experiences, to listen quietly, and to talk in safety with each other, it will be profitable. Time together is built on trust and it is fruitful to take all the time that is needed to listen, to speak, to find a common language and to feel safe;

  • a belief in creating opportunities to invite other families to develop their leadership is fundamental to mobilizing future leadership and action. Mentoring other families from home communities to attend future series is expected of each other. Some participants will also choose to be facilitators in future leadership series;

  • when we acknowledge that there are many forms of leadership and that our strength comes from our collective knowledge and actions over time, we are more influential;

  • there are social, programmatic and professional practices and trends that must be evaluated thoroughly, even when it is painful to face the resulting analysis of power and devaluation. Such practices must be examined in the series even when engagement in these discussions causes conflict, suffering and fear. We believe that together we can be trusted to think deeper, speak the truth from our experience, gain more awareness and rehearse what it takes to build alliances and capacity for inclusion in communities. It is from these places of understanding that we find ways to handle real opposition, resistance and exclusion in order to make necessary social changes.

The long-term systemic impact

Overall, AACL is dedicated to critically examining the dominant discourses and the professional practices witnessed by families who receive community supports for people with developmental disabilities. Much of this knowledge comes from the struggles of families who participate in the leadership series. Even the youngest families live with the harsh experiences of dealing with professionals. The wisdom they gather from hearing the stories of older parents increases their discernment about what is best for their son or daughter. These young parents become the source of leadership renewal an organization of fifty years can now count on into the future. The facilitators of the series believe that such a reflexive practice is necessary to sustaining the grassroots. Families learn by intentionally and continuously examining processes of social action that capitalize on the wisdom generated by those who have or will become the source of leadership in the community inclusion movement in Canada. As a collective of families, their ability to evaluate what is known about human service systems is but one aspect of the moral purpose in family leadership development.

Long- term systemic social change initiatives in Alberta communities have been the result of this investment in leadership development. The leadership of families has resulted in a number of innovations and influences (not an exhaustive list): the development of inclusive post secondary education initiatives across Alberta where young adults with developmental disabilities have a learning experience in colleges and universities; recognition of family supports in the child welfare reforms; the renewal and expansion of families joining the leadership series; initiation of an employment partnership with a service club (Rotary Club); and creation of family advocacy networks in every region of the province. ACCL as a non-governmental advocacy organization that embraces the values and ethics of inclusion now depends on the leadership of families as a means to activating social change. The essential elements of these initiatives are the product of collaboration between the regional networks of this advocacy organization, government policy makers, funders, business leaders and a university (U of C, CRDS). Much of the struggle and success of these collaborations occur at the level of regional networks that are linked across the province through the affiliation and commitment to the ideals of AACL.

What is a regional network?

The regional networks are a grouping of individual family members, often affiliated with other local organizations and agencies within their own communities, on a non-hierarchical basis around common issues or concerns, which are pursued proactively and systematically. Their relationships are based on commitment and trust. The networks are driven by a value for supporting inclusive communities and bring in other families and community allies. The networks also give out-- contribute to the community. What people who build inclusion do is understand and emphasize that relationships and person-to-person connections are central to achieving their objectives. Other types of networks that link people who see themselves as similar tend to be inward looking (for example; when people have a legitimate claim on victim status) and this becomes the basis for bonding. Such a group tends to erect and maintain its own walls. However, moving out of victimization and marginalization means focusing on what we want to create. The regional family networks that AACL has fostered, include people with different interests and identities and as such they tend to be outward looking, bridging to other parts of the community. Such networks are harder to create and require the skills of families like those who have experienced the leadership series. They recognize the challenge and chose to engage in the struggle and act as leaders, innovators and role models for many others.

Conclusion

The nature of these long term actions, rooted in the vision of inclusive lives for people with developmental disabilities, can be characterized as social activism through community projects that lead to practical outcomes and changes in social structures. The story of this family leadership initiative is seen as an illustration of one aspect of a larger cultural project that promotes social inclusion. It is offered here as a 'case study'-- an illustration of the renewal, strengthening and advancement of the community living movement through the strategic use of generic community resources. My conversations with Russians who have family members with psychiatric disabilities echoed the visions, hopes, suffering and struggle of Alberta families. Family experiences of marginalization and devaluation are universal over time, across groupings and cultures. The ways and means of social change will obviously be culturally distinct. However, I argue that the source and capacity for social transformation will always be rooted in the love and action of families. Collectively, families can make dreams come true.

References

Enns, H. & A.H. Neufeldt (2003). In pursuit of equal participation: Canada and disability at home and abroad. Captus Press, Toronto.

Kendrick, Michael (1995). The Natural Authority of Families, Crucial Times, Brisbane Australia.

Uditsky, B. & Hughson, E.A. (2000). Family leadership development. Connections, vol. 7, pp. 2-3

Wharf, B. & McKenzie, B. (1998). Connecting Policy to Practice in the Human Services. Oxford University Press, Toronto.

Contributor:

E. Anne Hughson, Ph. D. Associate Professor
Community Rehabilitation and Disability Studies
University of Calgary and Psychologist (Alberta)

Dr. Hughson is a recipient of a Faculty of Education Excellence in Teaching Award, and author and co-author of a number of texts, chapters and articles on disability-related subjects. As a researcher and teacher in disability studies, interests include exploration of community capacity for inclusion, issues of violence and abuse, social movements, critical analysis of social policies/programs and implementation of community based research approaches including program evaluation.

Email: hughson@ucalgary.ca
Tel. 403-220-6273 Fax. 403-220-6494

 

International Journal of Disability, Community & Rehabilitation
Volume 6, No. 2
www.ijdcr.ca
ISSN 1703-3381