Leadership in the Canadian Consumer Disability Movement: Hopes and Challenges

Non-profit organizations play an important role in Canadian society (Torjman, 1997). In the non-profit sector, national and provincial disability organizations have been credited with changes related to rights, equity, access, and inclusion of people with disabilities (Neufeldt & Enns, 2003). Disability organizations have had a long history of advocating for societal change related to people with disabilities (Stienstra & Wight-Felske, 2003). Neufeldt (2003) identifies three waves in the history of disability advocacy in Canada. The first wave, from the mid to late 19th century involved mostly professional advocacy that included the development of schools and institutions. The second wave after World War II was closely intertwined with the development of community services and rehabilitation and the growth of national advocacy organizations. Consumer oriented groups such as the Canadian Paraplegic Association began in 1945 to fight for war veterans' benefits and conditions; and parent driven groups began to appear in the late 1940s to advocate for their children with disabilities. The third wave, the disability rights movement, saw the emergence of a variety of impairment specific organizations, as well as disabled people's organizations or consumer organizations.

Many of these disability organizations have emphasized the need for a shift from more rehabilitation-oriented services to community-based, consumer-driven approaches (Nelson, Lord, & Ochocka, 2001; Peters, 2003). The social model emphasizes that the constraints facing people with disabilities lie in the environment, in segregation, discrimination, and a dependency upon professionals and others (Swain & French, 2000; Tregaskis, 2004). This gradual shift toward an inclusion and citizenship paradigm has been evidenced in the philosophy and direction of longstanding advocacy organizations like The Canadian National Institute for the Blind and the Canadian Association for Community Living, as well as consumer-driven disability organizations such as the Council of Canadians with Disabilities and the Canadian Association of Independent Living Centres (Neufeldt, 2003; Park, Monteiro, & Kappel, 2003).

The distinct role that consumer organizations play has been given some attention over the years (Neufeldt & Enns, 2003). Consumer organizations grew in part because of people with disabilities wanting a voice of their own (Stienstra & Wight-Felske, 2003). The voice of national disability organizations played a major role in the 1980's and 1990's in advocating for national policy and legislative changes such as the Canadian Charter of Rights and Freedoms (Boyce et al., 2001; Crichton & Jongbloed, 1998; Prince, 2004; Puttee, 2002). Research on consumer driven organizations in Canada demonstrates their role in enhancing participation and personal empowerment (Hutchison, Pedlar, Dunn, Lord, & Arai, 2000; Nelson, Ochocka, Jansen, & Trainor, 2006).

Leadership by persons with disabilities in both consumer driven organizations and other disability organizations has been seen as essential for the evolution of supports and services in Canada (Park, Monteiro, & Kappel, 3003; Phillips, 2003; Roeher Institute, 1996). McColl and Boyce (2003) pointed out that there is a noticeable gap in research and knowledge around leadership of disability organizations; such research would give insight at a time when consumer organizations are increasing their exposure and impact in Canadian society. Hence, the purpose of the paper is to describe a study which was conducted to directly address this gap. The research focused on the leadership role of consumer-driven organizations. 1

Social capital is one important aspect of the theoretical framework for this study. Social capital theory helps us understand that leadership is embedded in the concept of building strong communities and organizations (Minkoff, 1997). Social capital includes the ability of people to work together for common purposes within groups and organizations (Putnam, 2001). Another part of the framework is new social movements of which many consumer organizations are considered to be part (Dowse, 2001; Oliver, 1996). Whereas traditional social movements are characterized by a focus on social and economic issues, new social movements reflect a new paradigm that emphasizes a broader concern with quality of life, equality, self-realization, participation, and human rights (Habermas, 1981). New social movements assist in creating the foundation for social change in contemporary society (Habermas, 1981; Rifkin, 2000). Understanding leadership in the context of new social movements is important (Shakespeare, 1993).

1The findings of this current article are a component of a larger study that was conducted to address the role of consumer driven organizations in the non-profit sector in Canada (Hutchison, Arai, Pedlar, Lord, & Yeun, in press). Leadership questions were central to this purpose and the findings further point to the centrality of leadership to people's experiences with the disability movement.

Leadership, Social Capital, and the New Social Movement

Understanding leadership in consumer organizations by necessity requires an understanding of the nature of leadership in a broader context. It is possible and important to see leadership in terms of social capital and new social movements. Table 1, with two main categories, a. vision and approach and b. creating sustainable environments will provide a framework for presenting this background literature.

Table 1
Leadership and the Development of Social Capital in New Social Movement Organizations


Contributions to Social Capital

A. Vision and Approach

Seeks new approaches (Foster, 2000)

Vision, assumptions and paradigms oriented toward team empowerment (Horner, 1997)

Political capacity

B. Creating Sustainable Environments

Influential and able to create the right environments

Flexible and open to change (Foster, 2000; Horner, 1997; Yukl, 1999)

Stewardship, enhanced participation and involvement in decision-making (Fuqua, Payne, & Cangemi, 2000)

Team building, communication and listening skills (Horner, 1997; Yukl, 1999)

Human resource mobilization, development of new leaders (Horner, 1997; Foster, 2000; Wilson, George, & Wellins, 1994)

Mobilizing capacity

Political capacity is the voice and ability of people to engage in collective social action; it includes the symbols, language and values that people use to interpret their world and their position in it (Horner, 1997). Consumer disability organizations' raison d'etre inherently lies in fighting for new paradigm values and issues (Hills, 1998). These values include self-determination and citizenship which are now part of the language of consumer organizations. There has been a steady growth in "user" or consumer organizations, which some people say have their roots in the "politics of identity" (Hills, p. 1458) and social action.

Mobilizing capacity is the power of the group to mobilize resources and take action. The mobilizing capacity of an organization is built upon the strength of the interpersonal ties and network of relations that develop within the organization. The nature of the mobilizing capacity and leadership within new social movements differ from that of the traditional disability organizations. Organizations within new social movements have several characteristics in common such as: a tendency to be social networks held together by informal networks rather than formalized organizational structures; their emphasis on grassroots democracy; and their shifting and fluctuating membership (Scott, 1990). As the networks of the organization expand, so too does the mobilizing capacity of the organization.

Social capital helps us understand the relationship of leadership to political and mobilizing capacity (Brass, 2001). Putnam (1995) defines social capital as the "features of social life... that enable participants to act together more effectively to pursue shared objectives" (pp. 664-665). Acknowledging both the enabling and constraining influence of structure, social capital builds upon central features such as trust, the sharing of values, and development of networks (Chenoweth & Stehlik, 2004; Fukuyama, 1995; Habermas, 1981; Putnam, 1995). While traditional literature on organizational leadership focuses on the leader's ability to manage the economic and physical capital of the organization, it is equally important that leadership is able to contribute to social capital; that is, mobilizing capacity (row B in Table 1) and the political capacity of the organization (row A in Table 1) (Woods, 1997).

As described in row A in Table 1, vision and approach are important to understanding leadership and contributing to political capacity. Good leaders recognize that new approaches to working in the world are often called for (Horner, 1997; Foster, 2000; Wilson et al., 1994). Some argue that this is because today's workers "are considerably different than they were in the past with regard to their demands for challenging, meaningful work and expectations for more responsibility and autonomy" (Wilson et al., p. 277). Leaders need to be flexible and open to change, including being open to diversity and cultural differences (Horner, 1997; Yukl, 1999).

Tomorrow's leaders are also seen as having the vision, assumptions, and paradigms that are consistent with team-oriented empowerment (Horner, 1997). When leadership is conceptualized as an 'individual leader,' it includes elements of competence, performance, support, and control (McColl & Boyce, 2003, p. 389). On the other hand, when leadership is seen more as 'functions of a movement or organization,' greater political capacity is possible.

Leadership also plays a strong function in creating sustainable environments through strengthening mobilizing capacity (see row B in Table 1). Leaders are seen as being influential (Fuqua, Payne, & Cangemi, 2000; Zaccaro & Kilmoski, 2001) by creating the right environment, one in which people want to be involved and feel commitment (Horner, 1997). One view is that the right kinds of environments are 'learning organizations' that are based on the assumption that change and learning are linked (Senge, 1990; Woolner, 1995).

It is often mentioned that leadership plays a stewardship role, by unleashing the skills and potential of membership, thereby encouraging work to be built on the knowledge and efforts of many (Horner, 1997). Facilitating group participation and decision-making is also mentioned as part of stewardship (Fuqua et al.). Leaders who understand stewardship pay attention to the "distribution of power, purpose, and rewards" (Block, 1993).

Team building and communication skills such as listening are other assets of good leaders that contribute to mobilizing capacity (Yukl, 1999). Powers et al. (2002) identified a number of barriers to involving people with disabilities in leadership roles such as language and communication difficulties, supports and accommodations, and limited knowledge of leadership training approaches or resources. They imply that a multi-level approach is needed to promote leadership: "Advancing leadership requires supporting the development of individual leaders with disabilities, building the capacities of organizations led by people with disabilities, and encouraging cross disability partnerships" (p. 125).

Similarly, resource mobilization is sometimes mentioned as a key element of leadership (Horner, 1997; Yukl, 1999). Ongoing renewal of leadership through adequate resources, partnering, coalitions with like-minded advocacy organizations, and access to leading edge innovation are all needed but often lacking (Cameron & Valentine, 2004; Prince, 2004). With regard to coalitions, McColl and Boyce (2003) found that consumer disability advocacy has evolved from a heavy dependence in the early days on charismatic or dynamic individuals to greater reliance on coalitions with broad-based support.


Site and Participant Selection

A review of the literature and familiarity with the Canadian disability movement made it possible for the research team to identify the four major national consumer disability organizations that would become partners in the research. The importance of consumer organizations as partners in any research has been emphasized for some time (Boyce, 1998; Campbell, Copeland, & Tate, 1998; Krogh & Petric, 1994). Among the main national consumer driven disability groups are the Canadian Association of Independent Living Centres (CAILC), Council of Canadians with Disabilities (CCD), People First of Canada (PFC), and the National Network on Mental Health (NNMH). Two of the organizations were cross disability (CCD and CAILC) and two were disability specific (PFC and NNMH). Each organization was asked to assist the researchers in identifying one or two key informants from their organization, people who could be the official spokesperson for the organization and who were believed to best understand the issues addressed in the research (Patton, 2002). In most cases, executive directors of the organizations were identified as the most appropriate key informant. As well, five major national service/family organizations executive directors were also selected to participate: Canadian Association for Community Living (CACL), Canadian National Institute for the Blind (CNIB), The Canadian Paraplegic Association (CPA), the Canadian Mental Health Association (CMHA), and Easter Seals/March of Dimes (ESMOD). Finally, three federal government personnel from the Office for Disability Issues, Human Resources Development Canada were nominated by the research team and partner organizations.

Phases of Data Collection

The four national consumer driven organization partners comprised the collective case studies for three interrelated phases. Collective case studies provide an opportunity to consider a particular phenomenon using a number of cases that enable researchers to gain a deeper understanding of a larger collection of cases, leading to theory development (Stake, 2000). During phase one, policy reviews were conducted with the four partner organizations, government, and research/policy institutes to inform phase two. Phase two, reported in this article, consisted of interviews with key informants from national organizations and government. Because there has been a lack of research connecting consumer organizations to the non-profit sector and to social movements, the research team began the project using qualitative approaches to explore the research questions (Alary, Guedon, Lariviere, & Mazer, 1990). The interviews were conducted during the site visits to head offices. Site visits with consumer organizations took place over two days, with formal interviews lasting three hours and informal dialogue with other people on site happening sporadically. The site visits with service/family organizations and government were each half a day with two hour interviews. Key informant interviews employed interview guides that were sufficiently open to ensure that data collection was not limited by current scientific knowledge and/or assumptions regarding relationships and associations (Patton, 2002). Questions used in the interview were semi-structured, so that there were specific questions posed to each key informant and probing questions allowed for more exploration during the interview process. Questions posed during the interview focused on five key areas: the relationship between national organizations and their affiliates and links with other organizations; the focus and accomplishments of the national organization; their role in policy development, research, and advocacy; the role of consumer driven organizations in the non-profit sector and the social movement; and the future of consumer organizations in the disability movement. Data on leadership emerged across all these areas in the interviews. All interviews were tape-recorded and later transcribed. In phase three, a quantitative survey was sent to provincial and regional affiliates of the four partner organizations. Finally, the themes and patterns from the previous phases were used to build collective case studies of each of the consumer driven organizations. All of the data were amalgamated for final analysis, which included the interpretation of individual cases and case comparisons.

Analysis and Interpretation

The interviews transcriptions were organized and interpreted in accordance with the procedural stages for inductive analysis described by Patton (2002). Open coding was done on the transcripts, resulting in around 100 categories. These categories were then reduced from ongoing constant comparison across the data. Selective coding of recurring patterns indicated core categories, assisting the researchers in understanding the central themes (Strauss, 1987). Concurrently, using Patton's (2002) thematic approach to qualitative analysis, common themes which could effectively summarize the role of consumer organization was done. The original themes were then grouped, resulting in five themes. To increase credibility of the findings, we returned to the data to search for further examples which might support or refute our preliminary interpretations. Preliminary themes and patterns were scrutinized by co-researchers and partners to ensure accuracy before the findings were finalized, including focus groups with each of the four national consumer partners.


The importance of good leadership has been recognized throughout the history of the non-profit sector (Light, 1998). Leadership is critical to creating social change and to social movements (Dowse, 2001). Leadership is discussed under two themes. The first, leadership as a critical factor to the consumer movement, had two sub-patterns: consumer organizations provide powerful leadership because they are largely recognized as the legitimate and authentic voice of people with disabilities, distinct from service/family organizations; and individual leaders make a difference. The second theme, leadership in the face of challenges, had five sub-patterns: few visionaries; hope for future in youth is not without constraints; limited capacity for developing leadership at the local level; the unique challenges of People First; and the role of non-disabled leaders.

Leadership Critical to Consumer Disability Movement

Leadership has been acknowledged as a requirement for the sustainability of the consumer-driven disability movement. In light of emerging paradigms, the role and nature of leadership within the consumer movement is becoming more clearly understood.

Consumer organizations provide powerful leadership because they are largely recognized as the legitimate and authentic voice of people with disabilities, distinct from service/family organizations. The history of the evolution of the disability movement attests to the emergence of consumer-driven organizations as a vehicle for strengthening the voice of persons with disabilities. Our study showed that national consumer-driven organizations fundamentally exist because they believe they are a unique and valuable entity within the non-profit sector enabling people with disabilities to have a strong voice through their own organizations. The formation of consumer organizations was a response to a long and dark history of exclusion of people with disabilities often characterized by domination by professionals in many service organizations. As one leader from a national organization notes:

I wasn't around when [the consumer movement] began back in the mid-seventies. But my understanding is that it came from people with disabilities who felt that their issue was somehow being dealt with by rehab professionals and agencies in which they had no voice... People with disabilities looked at other sectors of our society that were disadvantaged and said "We need a voice as well" and began to organize. (Consumer-driven organization 1)

Having a voice through a strong consumer movement contributes to feelings of empowerment for people with disabilities.

Our study shows that asserting this voice has partly been possible through leadership of consumer-driven organizations emphasizing their distinctiveness from other disability organizations. The dichotomy between service/family and consumer organizations continually raises the issue of "whose voice counts" or how best to represent the voice of people with disabilities. This comment from a very progressive leader in a service/family organization highlights this issue of voice:

I think in our movement, more than so many others, it is about a struggle over whose knowledge counts, whose voice counts, and I think if we are going to move our agenda forward we need to find ways of making the knowledge of people with disabilities, of families of those who have worked from that perspective, matter. (Service/family organization 5)

Most respondents emphasized that consumer-driven organizations want to be and should be considered to be the "authentic" voice of people with disabilities. This belief is expressed by one consumer-driven organization leader: "CCD is recognized as a leader in the disability community and is recognized both by the disability community and by governments as a legitimate voice that has advanced the rights of people with disabilities in Canada" (Consumer-driven organization 1).

They are seen as authentic because these organizations were started by leaders with disabilities and most people running them have disabilities and therefore understand the issues as they live them each day. They pride themselves on their sensitivity to the experiences of consumers and see themselves as well positioned to educate the public about disabilities and the differences between consumer-driven organizations and more service/family organizations. Being the authentic voice of the disability movement expresses the political capacity of new social movements.

Individual leaders make a difference. Throughout the course of the evolution of the Canadian disability movement, some very significant progress was made by consumer-driven organizations' leaders. During our interviews, many leaders who have disabilities are named as catalysts in the IL, People First, and consumer survivor movements across Canada: "For some reason, in the seventies and eighties, Manitoba and Winnipeg, in particular, were quite progressive in a number of areas. There were strong leaders here (Consumer-driven organization 1).

All of the consumer organizations in this study have leaders who are seen as making a difference. Sometimes these leaders are with the national group, other times with an affiliate organization, or other times with both. There are many qualities noted in our study. First is the idea that these leaders are articulate, informed visionaries and strong advocates:

The thing is that when you're talking and philosophizing about the human rights issues, the visionaries out there are not by the thousands and the ones that have your attention are the ones that can stand up and speak to those issues super-eloquently. (Government 12)

The strongest leaders are also able to motivate others within the movement by serving as role models. Knowing that somebody with a disability had gone through a similarly difficult situation bears witness that consumers and the consumer-driven movement can survive. They have strong motivation and a clear vision of what is needed. This is reflected in comments about current leaders.

Leadership in the Face of Challenges

The findings of this study reinforce the view that leadership faces a number of challenges in the consumer movement. This is of grave concern to many people involved in the consumer movement.

Few visionaries. Sometimes people talk about the problems with leadership being related to having few remaining or emerging visionaries. While the consumer movement has had many strong and influential leaders in the past, it is currently faced with a need for new leadership. Old leaders are passing away or retiring, and many current leaders are overworked and susceptible to burn-out. One consumer leader expresses this concern:

Right now, the chair of our board is actually the vice-president of theirs ...It's always the same person that they call on for everything. I started doing this in '93 and there are probably only five people around the province that go back to that time.... They burn out, the politics, you know? (Consumer-driven organization 3)

A government representative discusses her concern about older leaders leaving and the lack of leadership that currently exists:

You've got the same board, you've got the same organizations that have been there for many years and they've lost any kind of vision they had for what they can do at the federal level... The leaders... had styles to get to [government] ministers but there's no leaders left like that. So my own estimation of those organizations right now is that they are going virtually nowhere... The really good leaders are unfortunately dying left, right, and centre. (Government 10)

Simply put, there are currently not enough people in leadership positions to support the consumer movement. While consumers have made a definitive mark in the new paradigm, the search for new leaders is becoming a major concern. Cautious optimism comes through in the following comments from a consumer organization leader and from a government person:

I don't know what will happen. I pray thank goodness it will be in the right direction, but there is a problem. We don't have enough people who are ready to take over these disability organizations... I think we've got enough done and we've at least paved the road, that consumer control is here to stay. (Consumer-driven organization 2)

Sometimes it's only after the fact, after you've been to an annual general meeting of one of the organizations where you see the myriad of different people with disabilities who are there and speaking for themselves and you realize that you have to try to continue the momentum so that it evolves over time. There have to be people that will come forward, and I am sure there will be... I don't doubt that for a minute, but the people that come forward may not come forward as fast as we would like them to and in the meantime there have to be people who can keep the whole mechanism afloat as those leaders evolve. (Government 12)

There is a concern about visionary leadership not only in the consumer movement, but the broader disability movement. The following representative of a consumer organization discusses this issue: "... I would see there being a need for people with vision, a lot of visionary people... They need the board to be visionary as well... And the same for the disability movement, they need visionary people in their organizations... we need more though" (Consumer-driven organization 4).

Hope for future in youth is not without constraints. Consumer organizations understand the importance of having strong leaders for continued success of the movement. Investing in youth to become the new leaders of tomorrow is seen as critical. To this end, they realize the need to develop new recruitment strategies for sustainability:

There's nobody that's really working on leadership and youth right now and this is really important. Mind you, right now we have some people coming onto our board who are much younger and we really need a strategy in this area... It's a little bit of a crisis, but also this should be looked at as a window of opportunity, because then there is less history and baggage. (Consumer-driven organization 2)

The concern was raised from a government person about not having the proper mechanisms in place to develop potential leaders:

How do you move them [young leaders] from a little group in Moose Jaw to a group in CCD if you're not funding the local and regional level anymore? How do you tap those people? I'm not saying the leadership isn't there. It may very well be there. There's no mechanism to tap it anymore. (Government 10).

However, the recruitment of youth is not easy. Young people come from a generation that has experienced the benefits of the consumer and disability movements - such as inclusion - and do not necessarily have the same desire as the previous generation to participate in advocacy and public policy issues. A government person suggests that the younger generation is complacent around the need for fighting for disability issues. This complacency is seen as possibly coming back to haunt them:

Within the disability movement, if people don't know the history, they will take it for granted. I was talking to a couple of young people the other day about how well they were doing and how well they were moving up through the system in government. These people were at a certain professional level in government and I said 'wow, that's really good that you're there,' but there appears to be a sense that everyone owes you, that there's no work to be done to get there. But I would think that if the work doesn't continue that they'll become complacent and the issues will come up again. (Government 12)

Recognizing that their future leaders are a different generation with different concerns and needs, a number of consumer organizations mentioned that their recruitment and leadership development strategies required a makeover:

The movement is struggling with a couple of things that will require attention. One is the development of a new leadership base. Maybe our organizations have to find new ways of being attractive to young people. My sense is that many of the younger people are interested and do have passion. Certainly the issues still exist, but their commitment is probably shorter term and their focus is much more specific. They're not taking a twenty-year view; they're taking a two or three year view. So there's a big challenge there. (Consumer-driven organization 1)

Finding and keeping good leaders to work in service/family organizations is also a challenge:

One of the commitments that we have in our organization and it's within our human resources hiring policy is that, given two candidates of equal skills and training we will hire the person who is a consumer... There's a lot of good people I've had working here go off and work for CBC, the Royal Bank and Toronto Dominion Bank and I sure as hell wish they were here but they're making a lot more money. (Service/family organization 7)

Limited capacity for developing leadership at the local level. Leadership development is recognized as an important part of overall capacity building. It needs to be seen as an integral part of overall development of consumer organizations within the broader disability movement. Additionally, many consumer organizations believe that this capacity building best happens at the local level. Sometimes the term 'grassroots' is used. This means that efforts are concentrated at the community level, where member organizations operate, because consumers are considered to be the grassroots of the disability movement. One of the most valuable contributions of grassroots organizations is their emphasis on engaging ordinary people in collective efforts. According to one consumer leader, one of the differences between consumer and service organizations is that consumer organizations operate at a more "grassroots" level:

Service organizations are very controlling and if you look at the composition of most of their boards in terms of people who are out there working on their boards and you take a look at the composition of our folks, our folks are all grassrooters, I don't even understand them to a great extent because all they do is policy and all they do is plan to plan. I am more into getting out there and getting your hands dirty. (Consumer-driven organization 3)

Sometimes the structure of the national organization with its affiliates may impede local level capacity building. Three of our four consumer-driven organizations in this study have structures with no mandate over their affiliates. One of these organizations acknowledged its weaknesses:

We've addressed those marginally and sporadically, and it is not consistent. Frankly, our board and organization and I agree that membership development, leadership development has to happen at the local level. It is not a top-down, national-down initiative that is going to have the most impact. It has got to be people at the local level using local resources for all of those kinds of things that will maximize their capacity. We did a youth leadership development training event - brought 25 people together from across the country. It was a great event, but we have no capacity to go home with those people and help them at the local level organize or create something... So the membership development side is something that is difficult for us to do because of our structure and because of our mandate. (Consumer-driven organization 1)

One organization identified with strong capacity building has their national office approve and partially fund its local affiliates. Hence, recommending more effort or resources be devoted to leadership development takes on a different meaning. Working at the local level enables people in affiliates to feel connected within the parent organization, instill a sense of ownership, gain access to funding, and increase the opportunity for immediate action. It also helps build the personal resources and skills (capacity building) of its members by participating in the social policy work within the larger disability movement:

I think why the ... model works is there isn't an additional bureaucracy, we don't have provincial affiliates and we can reach the people instantly. If we really ever wanted to totally mobilize we would be able to do it really quickly ... I think the grassroots element, that's where our strength is and if we have power, that's where the power comes from ... Without a grassroots connection, you will not have social policy participation because unless people believe in themselves, want to learn about issues, want to be compassionate about issues, feel good about doing that, and have access to information and know that their voice counts, you won't have that. (Consumer-driven organization 2)

Single issues can be used as a rallying point around which groups with diverse interests can be mobilized, often at the grassroots level, with a commitment to addressing oppression as a common ground. A government person reflected on some ideas about how to stimulate local initiatives:

What we may be looking at in the future is more of an ongoing planning tool where, over the course of the next twelve months we're looking at this theme under access, whatever it would be: access to transportation, or access to employment, or how to develop leadership among disability organizations ... There are still people that want social change. (Government 12)

In response to the consumer organizations' frustration with working at the local level, some consumer organizations suggest the possibility of providing leadership through organizing collectives around particular issues affecting the consumer movement:

I think there is a need [for collective action], whether we're best able to do that or whether the resources should be more localized, I think is a question. I think for example, [organizations] that have just applied for and received a joint project to build the capacity of the disability community in the area of new policy initiatives around disability supports. We will bring together some of the national organizations and some of the provincial and federal government, into one forum. There are proposals out there around new disability supports initiatives, reinvestment under the social unit framework agreement and 'In Unison'. It is a leadership initiative, but it is framed around a specific policy issue. It will give to some of the national organizations that are poorly resourced, an opportunity to talk to other nationals about what's going on, on the issue of disability supports. (Consumer-driven organization 1)

The unique challenges of People First. People First experiences very similar challenges to leadership development as those faced by the three other consumer organizations that were part of this study. However, they are also presented with some additional constraints as a result of being a consumer organization made up of individuals who have an intellectual disability. The first challenge is that People First has had to compete with the family movement as the voice of the consumer. This statement from a government person makes a case for the consumer voice:

So if I was comparing CACL to People First, I think many of the parents from CACL can speak to other parents. A mother with a child with a disability who tells her story can reach the heart and the mind of another mother who may have a child who's not disabled ... The consumer driven organizations represent people with disabilities. Their members identify what works for them, what doesn't work for them in removing barriers and creating a more inclusive society. (Government 11)

For People First to truly be a separate voice from the family movement, considerable changes have to take place in terms of education and resources within the related service/family organization:

The voice of people with intellectual disabilities themselves needs to be an independent voice, needs organizational support and investment to make that happen. Now there are challenges and pressures and there's a lot of learning to be done in terms of how to do that. But it's been solidly committed to that for a very long time and I think while the relationship can always be improved and that commitment can be realized in clearer and more direct ways ... People First has got to be promoted, resourced, protected, supported as the voice of people with intellectual disabilities, not as the only voice, but as a really important, essential voice of people with intellectual disabilities ... Let's find some practical issues that we work on together at a pace and in a way that means we are, in fact, developing a shared understanding ... CCD has really pushed back on that this year, but in a really productive way. Their caution to us is, as you build a family based movement--don't forget what it's about. It's not about families in the first instance. In the first instance we've got to make sure that this continues to be about the rights of individuals with disabilities in this country. I think that's an important role for CCD. As we try and carve out a space to move forward a family agenda, it is important for CCD and People First to keep the focus clear. (Service/family organization 5)

Second, People First requires accommodations to maximize leadership development with their staff and volunteers and ensure they are more than token members of the disability movement:

People First members need to...meet face-to-face so that people can see people's expressions ... Conference calls do not work. HRDC didn't like hearing that though ... People have to figure out ways to involve People First, one of the most important players ... They assume that people can read. Well, people might not be able to read ... Literacy can mean it can be done in picture form for some people. There are other ways of looking at things and People First recognizes that. They also recognize at the same time that there ought to be a support person to that person at any meeting ... to help that person through the meeting, but before and after the meeting too. Also how to accommodate different members in different ways at different times. (Consumer-driven organization 4)

The issue of accommodation is also an issue for the other consumer organizations. For example, People First is a member of CCD, a cross disability organization. Consumer leaders are aware of the importance of accommodation and need to continuously educate others of the importance and strategies:

There is value in ensuring that voices of disadvantaged sectors are heard in social policy and that there are ways of ensuring that through appropriate accommodation for individuals, so that people can participate. Government has a responsibility and role in ensuring that their debates are open. (Consumer-driven organization 1)

Some of these struggles experienced by People First are also concerns of new social movements which are cross disability in nature. The voices of people with 'learning' difficulties are often silent in the debates. However, there must be recognition of social, psychological, and cognitive differences as a pre-requisite to an inclusive theory and the politics of disability.

The role of non-disabled leaders. The final challenge related to leadership is problematic for consumer-driven organizations. There is generally an understanding that the majority of leadership should come from people with disabilities. All four consumer-driven organizations we spoke with have policies that ensure that the organizations are primarily controlled by people with disabilities. This contributes to the credibility of the movement. As well, government policy is clear on the relevance of 'standpoint' in the composition of disability organizations:

I think that our official definition is 65% of a board of an organization has to be composed of people with disabilities ... What I've found is that with individuals who are either not informed or have a preconceived idea about what having a disability is, that if you want to open their minds, you need to have someone with a disability do that. (Government 11)

None of the consumer organization policies that we examined actually state that any one position such as executive director must be held by a person with a disability. For example, only two of the four national executive directors have disabilities. This following quote raises the issue of whether consumer organization leaders should have a disability, but emphasizes that having a disability does not guarantee a strong voice:

[He] is one of the most articulate, knowledgeable, consumer [organization] advocates in this country ... The man is brilliant. He is articulate, yet do most bureaucrats who know him really listen to him? Generally, if he is going to stand up and say something ... he is an able-bodied person. The same thing said by somebody who is in a wheelchair or who is blind will be listened to, which is equally dangerous because any blind person can stand up and say anything, why, they must be right, they're blind. (Service/family organization 9)

Good leaders engender trust and respect, regardless of whether they have a disability or not, as reflected in this comment about a staff person without a disability:

He's amazingly unbelievable. I don't know how he does it. You know, he is the most incredibly patient person and people trust him and like him and respect him and that really translates to the kind of decision-making that goes on. (Consumer-driven organization 2)

If non-disabled persons are in leadership positions, there are several safeguards that must be taken. For example, no speaking on behalf of people with disabilities; not seeking a position of power within the movement; and not doing research about people with disabilities, but rather exposing the disabling aspects of society.

Discussion and Conclusions

Being recognized as the authentic voice of people with disabilities is one of the most important ways that consumer organizations can impact the non-profit sector and Canadian society in general (Cameron & Valentine, 2001; Council of Canadians with Disabilities). The process and findings of this study affirm the importance of consumers being recognized as the authentic voice (Campbell, et al., 1998; Krogh & Petric, 1994). Importantly, too, the results of this study indicate that all four consumer driven organizations play a significant leadership role by being recognized as the authentic voice (Campbell, et al., 1998; Krogh & Petric, 1994). As we have seen, having a voice and being recognized as the authentic voice has contributed to many people with disabilities becoming empowered and having the confidence to speak out (Balcazar, Mathews, Fancisco, Fawcett, & Seekins, 1994; Rappaport, Reischl, & Zimmerman, 1992). Thus, the development of political capacity as well as social capital within the consumer movement has contributed to the strength of this new social movement.

This expression of voice is probably best articulated by the leaders of the early consumer disability movement. Often referred to as "visionaries" by research participants, these leaders grounded the consumer disability organizations in a clear vision. We can see this as consistent with social movement theory where one of the first stages of the development of a social movement involves the development of clear vision and ideology (Lavoie & Stewart, 1995; Trainor, Shepherd, Boydell, Leff, & Crawford, 1997). Interestingly, in the Canadian context, there have been some key social and political events, such as the International Year of Disabled Persons, inclusion in the constitution, and the emergence of the independent living (IL) movement, which enabled the early leaders to grow in stature and become strong national leaders (Boyce et al., 2001; Lord & Hutchison, 1996; Peters, 2003).

The consumer driven organizations are unique in the non-profit sector because the leadership is based on the lived experience of disability. Unlike most service/family organizations in the non-profit sector where people are "clients" (Hall, 2003; Wolfensberger & Thomas, 1994), people with disabilities in new social movement consumer organizations are the leaders-both individual and collective. This is a profound difference that is deeply felt by leaders and members (Hutchison, Pedlar, Lord, Dunn, McGeown, Taylor, et al., 1996). People in such settings understand oppression and its consequences. Hills (1998) explains that because consumers have been:

... marginalized by mainstream cultural values... they represent a critique of wider culture. The sources of oppression are seen to be the very nature of personal and familial relationships... Reevaluating personal histories and experiences is seen to be the essence of the movement toward change: the personal becomes the political. (pp. 1461-62)

Although current leadership is playing a vital role in the non-profit sector, data from this research showed that there is grave concern with the future leadership capacities of consumer driven organizations. The visionary leadership that was so important 20 years ago must now give way to leadership that can carry on the vision and implement it within the new social movement (Drake, 1997). The struggles experienced by the consumer organizations in this study have also been witnessed elsewhere. Powers et al. (2002) discussed three ways that increasing leadership opportunities can be seen as a priority. These are all consistent with developing the mobilizing capacity (e.g., strengthen networks and relational ties) within the new social movement. First, opportunities for current leaders with disabilities to provide leadership education and mentoring to potential leaders need to be supported. Important factors include: providing the necessary support and accommodation, encouraging networking with successful grassroots initiatives, providing mentors, encouraging a range of leadership roles, and supporting people with disabilities. Second, the direct funding of consumer organizations should be strengthened and consumer leaders with disabilities need to be asked about goals and funds to specific areas like leadership development, proposal development, and partnerships. Third, all material and activities should be accessible to everyone. This means all people can participate, understand, and contribute. Also the sharing of resources and knowledge across organizations will enhance this objective. Another suggestion is the use of the story and narrative to teach leadership (Danzig, 1999). This approach may nicely complement the 'lived experience' focus of consumer organization. This may also address some of the People First barriers Dowse (2001) talks about as 'collective identity' issues. One thing that is clear - building the capacity of the next generation leadership requires a deliberate plan and specific resources (Boyce, 1998; Bullock, Ensing, Alloy, & Weddle, 2000; McClusky, 2002; TenHoor, 2002). However, to put this into perspective, Hills (1998) says of the continual shifts that produce new leaders: "The involvement and allegiances of individuals are in a constant state of flux. The central issue around which groups mobilize may change in focus, charismatic leaders emerge, and are later replaced by others" (p. 1462).

There are hints in the research that building a social capital approach within and outside consumer driven organizations could enhance both organization capacity and leadership (Coleman, 1990; Foley & Edwards, 1997; Putnam, 2001). There is growing evidence that one of the best ways for this to happen is through grassroots initiatives (Couto, 1998; Lakey, Lakey, Napier, & Robinson, 1995; Smith 2000; Tocqueville, 2000). Some very good examples of social capital development and leadership development have been seen in consumer organizations with strong affiliation with member organization. Other consumer organizations have much weaker local structures, few local groups from which to draw new leaders, and hence more limited grassroots capacity. This awareness of the importance of grassroots may also shed some light on a different issue. On the surface, it may seem like a paradox that few young, competent, potential leaders are becoming part of the consumer disability movement, but instead may be choosing a life in the community and working in the private sector. While this could be deemed as a success of 25 years of inclusion, it does not auger well for the consumer movement and may be linked to the weak 'grassroots' capacity of many consumer organizations. Foster (2000) has argued for investment in youth as being an important component of good leadership, that leadership can be taught, and that leadership must be nurtured within the context of building a civil society. The hope for a better future lies in nurturing the capacities of our youth (Ginwright & James, 2002). This idea of civil society can also be linked to the issue of partnerships. "Partnerships and strategic alliances are crucial for effective leadership; new leaders must know how to network and build coalitions to address complex issues" (Foster, 2000, p. 90). The new paradigm stresses citizenship and full participation. It will be essential in the years to come for consumer driven organizations to build strong local capacity and linkages with civil society. Such work will require new leadership that is aware of the importance of linkages, grounded in the grassroots where the voice of people with disabilities is best expressed (Powers et al., 2002).

This discussion gives rise to the need for a framework that might assist these organizations in building their mobilizing and political capacity for enhanced leadership in the future. In Figure 1 below, we highlight two foundations and three strategies that emerge from the data. The two foundations are the new social movement values and valued resources. In many ways, these foundations are an imperative for the development of future leadership. The new social movement values ground the organizations and the disability movement in the new paradigm (Nelson et al., 2001; Shapiro, 1993; Trainor et al., 1997). As well, these values reflect the authentic voice of people with disabilities and the political capacity of the disability movement. Valued resources as a foundation ensure that the disability movement is adequately funded in the most appropriate way. This involves building partnerships with other movements, government, and community. Research shows that trusting partnerships are critical to building social capital (Minkoff, 1997). Such partnerships have the potential over time to build more valued resources for the disability movement. In this framework, additional resources must be accompanied by a commitment that makes leadership development a priority.

The second part of the framework for enhanced leadership in the future involves three strategies that reflect the data. These three leadership strategies focus on three levels of leadership that are highly interrelated. The first strategy, the development of strong individual leaders who can "make a difference," although vital, is insufficient in and of itself. The disability movement also needs to ensure that there are strong organizations. This second strategy of strong organizational leadership enhances the capacity of local leadership and connects with the grass roots. Strong organizations also create the infrastructure for sustainable approaches to leadership development. The third strategy involves strong social movement leadership that enhances collective identity of people within the movement and links with civil society (Dowse, 2001). This 'movement leadership' creates a common cross disability vision for the movement and builds links with other movements within a civil society.

Considering our data in light of this framework may suggest that the current disability movement is vulnerable because of weak links between the foundations and the strategies. A central aspect of this framework is congruence and coherency. It is not enough to just have two of these components of the framework functioning or doing well. For example, having new social movements and strong individual leaders will not result in a strong movement. All five components need to be well developed and coherent. Coherency means that the components are seen as interconnected. In this sense, valued resources need to be designated for leadership development in a way that is consistent or coherent with other components. Coherency in human services is always a challenge (Wolfensberger & Thomas, 1994). This will require a conscious and continuous effort on behalf of all consumer organizations, the broader disability movement, government, and society.

Finally, social capital development suggests that there is room for more active connection and fostering of social capital through abstract trust which is possible among collectives sharing norms and values. Minkoff (1997) suggests that although the connection is not clear, new social movements may play a role in the formation of abstract trust between national movements and local mobilizing structures. This study has shown that potential political capacity of the four national consumer driven organizations is noteworthy. These groups are both a symbolic and practical national voice of people with disabilities. This study has also shown that the mobilizing capacity of consumer driven organizations needs further attention and elaboration. Leadership in the future will be strengthened as the groups focus on different levels of leadership. The strength of the disability movement in the future will depend upon expanding these kinds of relationships within the context of strong leadership.


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Submitted by

Peggy Hutchison, Susan Arai, Alison Pedlar, John Lord and Colleen Whyte

Contact Information: Peggy Hutchison, Recreation and Leisure Studies, 500 Glenridge Ave. St. Catharines, ON L2S 3A1; phone (905) 688-5550 Ext. 4269; peggy.hutchison@brocku.ca

Peggy Hutchison is Professor at Brock University. Susan Arai is Associate Professor in Applied Community Health Sciences at Brock University. Alison Pedlar is Professor in Recreation and Leisure Studies at University of Waterloo. John Lord is Community Researcher in Waterloo, ON and Colleen Whyte is a PhD. student at University of Waterloo.

The research team gratefully acknowledges the Social Sciences and Humanities Research Council of Canada for their financial support.


International Journal of Disability, Community & Rehabilitation
Volume 6, No. 1
ISSN 1703-3381