Learning from Our Past and Sustaining the Legacy: Interviews with Disability Allies
At Skills Society, we often quote disability advocate and social innovator Al Etmanski, when we say our work towards innovation and progress in supporting people to live the best lives possible is about getting the right mix of the old, the new, and a dash of surprise. There are important elements of the ‘old’ - our history, roots, and key learnings - that we cannot forget and must weave into our current and future work and leadership practices. As part of our leadership practice at Skills, we strive to learn from and honor the wisdom of those who came before us, including the people we serve, families, and allies. We recently had the opportunity to sit down with four past and present Skills employees and volunteers who have been leaders in the sector since Skills’ inception in the 1980s, to learn from them and explore:
some important moments in our history
what to keep in mind in supporting people to thrive,
what good leadership within disability services means to them
what not to forget as we look ahead to the future
Longtime advocates and allies, these leaders share a conviction for disability rights and justice and hold deep wisdom and knowledge of our community and sector. The leaders we interviewed are:
Elaine Baker-Rowe, Team Leader
Elaine joined Skills Society in 1981 after supporting people to move from institutions back into community alongside other citizens. Elaine has worked in various roles and has been a Team Leader since 1990. In her 40+ years with Skills, Elaine has built strong relationships with the individuals and families she serves and the teams she leads, supporting people to be engaged citizens. Elaine is our longest serving employee of Skills Society.
Hart Chapelle, former Board Chair
Being his passion, Hart spent his entire professional career in human services, and the last roughly 35 years with the Government in various capacities, including as CEO of PDD Edmonton. Hart built a deep relationship with self-advocates, families, and community organizations during that time, and served as the Board Chair of Skills Society from 2017-2021.
Jan O’Neill, Manager of Community Supports
Jan joined Skills Society in 1990, working in various roles, and has been a Manager since 2007. In her 30+ years with Skills, Jan was instrumental in supporting advocacy efforts, particularly self-advocacy movements, and expression of rights through arts, as well as numerous innovative initiatives and projects aimed at finding ways to center the people we serve in community.
Karen Huta, former Director of Human Resources
Karen joined Skills Society in 1985 and transitioned into the Human Resources role in 1996 where she was the Director until 2024. In her 38 years of service, Karen was a mentor to many. She played an important role in cultivating a culture of kindness and playfulness at Skills Society, where everyone, including people we serve and employees, feel truly seen, heard, and valued.
We are honoured to learn from Elaine, Hart, Jan, and Karen, and continue to build off the work they and many others have led over the decades. What they share highlights the importance of continued advocacy, the recognition that we are all leaders, and the persistent pursuit of removing barriers and supporting the good life for people with disabilities.
Important moments in Skills’ history
The history of disability rights in Alberta is deep and profound, marked by significant moments that have shaped the present landscape of community supports and services. As reflected by Elaine, Hart, Jan, and Karen, there were several pivotal moments within Skills’ history that are instrumental as we look ahead to the future. While the full history could not be captured here, a few moments resonate with this year’s theme, “We Are All Leaders”: disability rights and advocacy, and the relentless pursuit of the good life.
You can learn more about disability movements in Alberta’s history at skillssociety.ca/about/history/#disability-rights-movements.
“I like to think we were listening. We were collaborating. We were talking. We were exploring”
- Karen
Advocating for and supporting disability rights
For this group of leaders, leadership showed up in various ways within disability rights history - people with disabilities, families, and allies speaking up against oppression, advocating, and challenging the status quo. Hart highlights that many significant movements, including deinstitutionalization, community living, and self-advocacy movements, in part, stemmed from self-advocates and families recognizing their rights and how they could take on leadership roles to drive their desired future through community-based living. This period was followed by community development work that led to the creation of community support organizations like Skills Society.
In the 90s and early 2000s, there was a particularly strong self-advocacy movement. Jan shares that Skills Society, alongside self-advocates, supported the creation of groups and conferences for self-advocates to organize, share their stories, and take action for social change. Skills Society’s Consumer Rights Group, a self-advocacy group, came together to create the Rights We Want! A Statement of Rights and Responsibilities. Agencies and allies need to continuously be mindful of and shift power, and so over time, it gradually moved away from agency-orientated groups to purely self-advocate-driven groups.
As leaders, the group emphasized not losing sight of our role as supports and allies in supporting and empowering people to learn about and act on their rights, and communicate their needs, wishes, and issues they’re facing - ensuring the voices of people with disabilities are centered.
You can hear from self-advocates and allies within Skills about the history and legacy of the Rights We Want! at skillssociety.ca/about/history
“Everybody has rights. It’s really important that people feel that pride in themselves, accountability, and that strength to be able to speak up for themselves and make change happen. That’s why it’s so important.”
- Jan
Not settling, always striving for the good life
Skills Society’s work continues to be rooted in disability rights and advocacy, providing people with disabilities with the same opportunities and choices as any other citizen. The group felt that inherent in this approach is a deep conviction to never settle. While the rights movements led to significant changes, there is still more work to be done in removing systemic barriers and supporting people to be full citizens in community. It takes everyone, self-advocates, families, supports and system stakeholders.
“People need to say ‘no, this can be better’. We knew we could do better and that’s how changes have come.”
- Elaine
The group highlighted that Skills has always strived for the good life: “I don’t remember a time ever, where people weren’t committed to supporting people to have the best lives possible, and whatever that meant to the individual, to the best of everybody’s ability” Karen shares. While institutional rights (e.g., employment, voting) are essential, what is often still missing are the relationships, belonging, and opportunities to contribute to and shape community - to be of community. This group, along with self-advocates, families, and allies, shared a frustration with the systemic barriers and lack of opportunity for connectivity in community. Turning to creativity and innovation, Skills Society has always pushed the boundaries of what it means to be ‘in community’, striving for a sense of reciprocal participation and deep belonging for the people we serve.
“Throughout my time at Skills Society, there was never complacency. It was always moving forward, leading edge, and if we saw a way forward that would open doors for the people we support, there wasn’t hesitation”
- Karen
Learnings to keep in mind to support people to have the best lives possible
The group spoke of the importance of recognizing that while we are all unique, we are all human, deserving of dignity and respect. This recognition of our common humanity sets a foundation for the values that guide our work and advocacy efforts.
“We all want to belong. Everybody has a place in society, and I think we need to work hard for that”
- Elaine
Learnings to keep in mind to support people to have the best lives possible
The group spoke of the importance of recognizing that while we are all unique, we are all human, deserving of dignity and respect. This recognition of our common humanity sets a foundation for the values that guide our work and advocacy efforts.
Recognizing there are people in our communities who face systemic barriers to community inclusion and belonging, the group emphasized shifting from the notion that people must ‘fit’ spaces to be included, but rather belonging as being something that is co-created between people. Asking, how can we support someone to be their true selves, where their life is full and as imagined by them? How can we support people to share their stories and be truly seen?
The good life is rooted in relationships
Jan shared that “we need to have a strong community around us to support us to have good lives”. Karen highlighted the myth of independence, stating never has there been a time where people have been able to exist on their own.
“We have all needed, relied on, or influenced others in one way or another. If we hadn’t had supportive, genuine, inquisitive, helpful, kind people, who knows where we’d all end up.”
- Karen
This is not to say that people’s independence and autonomy shouldn’t be valued, but rather that it should be recognized and supported in a relational ethic. A relational ethic is characterized by interdependence and interconnectedness, and at the same time, where autonomy and independence can also exist1 . Relational ways of being and interdependence highlight our inherent need for each other - it’s reciprocal, everyone is valued and has something to offer. Jan emphasized the importance of reciprocity in relationships in the good life: “People need people in their lives, to be their friends, to be their supports, to look out for them, and people also need to feel like they’re contributing, giving back, and they have something to offer.”
Good leadership within disability rights and services
Karen highlighted kindness and being a good listener - openness to other’s perspectives, and the wisdom and knowledge they offer - as important qualities of good leadership. Jan adds that we all have gifts, abilities, and talents, and a leader’s role is to bring forward and celebrate those gifts. Elaine shared that good leaders are empathetic, meaning they listen to others, and respond with appreciation, compassion, and care. These are all important qualities to strive for when working alongside people we serve, families, and teams, and reflects how leadership is about our responsibility to each other and our community.
“Leadership is a thing and I wish we talked about it more in a real and true way. Real, as in: it can be damn hard, messy, complicated, heavy, stressful and lonely. True, as in: true leadership requires vulnerability, interdependence, trust (in all ways), accountability, risk, growth.”
- Mia Mingus, disability activist
Bergum & Dossetor, 2005, Relational ethics: The full meaning of respect
Grounded in vision
Resoundingly, the group spoke to the importance of passion, vision, and values in leadership, particularly within disability rights, supports, and services. Importantly, leaders can also clearly express this vision in a way that guides and inspires others, fostering a shared sense of purpose and contribution to the vision; “leaders can lead from whatever role they hold because of their belief in the vision and their values”, Jan shares. Hart further adds that visionary leaders balance having an eye on the here and now, while not losing sight of the future: “effective leadership has to have a keen eye on two things, the evolving context within which the organization exists, and the future evolution of the organization. In other words, how is it that we’re going to be a better organization tomorrow than we are today?”
“You have to have knowledge as to what we’re doing and where we’re going”
- Elaine
Leadership as a collective responsibility
“A leader doesn’t stand alone”
- Jan
The group emphasized the importance of recognizing that we are all leaders, stepping in at different times, and working together towards a shared vision. Hart emphasizes that in our current culture, leadership is often seen or portrayed by charismatic leaders, who are proud and loud. While strong leaders at the helm of organizations are important, leadership must come from everywhere within an organization. We need to demystify the notion that leadership is tied to a specific role or that only those in positions of authority can lead. Hart highlights that leadership exists everywhere, including in community where people are supported, and this includes the people we serve.
“There’s never been a time so important as now, where in organizations, everybody’s got to be a leader. Because that’s going to help defend against the erosion of our values, and that’s going to help grow our values.”
- Hart
By way of observation, they are noticing throughout the province a shift away from the values and culture from which community disability services was rooted from its inception. “The ideology, the values, the culture, are disappearing little bit, by little bit, and the onus is on community organizations to retain it and breathe more life.” Hart shares. Organizations need to find ways to support leadership by everybody (people served, staff, community members), helping people see themselves as leaders and recognizing and celebrating leadership behaviour. This includes demonstrating and modelling leadership through everyday interactions and practices that are grounded in the values of the organization. This further highlights how leadership is not an ‘event’ or something that only happens when you bring people or your team together. It’s built into every aspect of everybody’s job, every day. Hart emphasizes that this leadership practice - leadership in our day-to-day practices, at all levels - is one very important way of safeguarding the organization’s value system. This resonates strongly with our belief and approach to
growing leadership practice within Skills. From mentorship from peers and supervisors to innovate projects and initiatives, like the Employeee Education Award and Learning Award for people we serve, Skills seeks to create opportunities for people to develop knowledge and skills, and recognize their gifts. The foundation for this work is a healthy, creative, and innovative culture, that together we all steward. We view creativity and innovation as a vehicle for asking questions and thinking differently about challenges, not settling for ‘good enough’, and exploring innovative pathways, improving our services and systems to work better for the people we serve.
“Skills is one of the organizations where the values and culture are still strong. That’s leadership - that’s an organization leading. Whatever organizations can do to continue to lead along with self-advocates and families to not let our values die, that’s so incredibly important. I can’t overstate the importance of that”
- Hart
What not to forget moving into the future
Moving forward includes looking back
The group acknowledged that with fewer disability studies programs and many of the early people and self-advocates who led disability rights-based work aging and leaving, the sector is at risk of losing the history - where we’ve come from, and why we’ve come from there. As reflected above, this history plays an important part in understanding and practicing the values within a disability rights approach. The group strongly felt it was important, no matter how far into the future we go, that we continue to capture and share disability rights movements and history. There is wisdom and knowledge in what’s come before, what’s happening now, and what the future might look like; to discount any of those three is a disservice to our work and community, Karen shares. The group also highlights how this retrospective practice helps to fuel movements and the work going forward: “Sometimes it’s been a positive thing to look back, even if we weren’t as far as we’d hoped, to see how far we were and that we were on the right trajectory.” Karen says. Skills is committed to supporting our community and sector in not losing this important history, investing in training, and other projects such as the Rights We Want! documentary and Leadership Workbook to name a few, that help carry this history forward.
“We need to keep the history alive so that we don’t go back and repeat past mistakes”
- Elaine
“Part of me thinks, no matter what the circumstances are, we wouldn’t be where we are without where we were”
- Karen
Centering the people we support
Something that has always been at the heart of our work at Skills is practicing in person-centred ways. The group felt strongly that moving into the future, we can not lose sight of this important value, and the history from which it emerged. “So much of our system and structures, both in government and in organizations are about groups of people, and it’s so easy to forget about individuals, of the uniqueness of each individual,” Hart says. The group spoke to the importance of really learning and understanding deeply each individual - their hopes and wishes, gifts and strengths, likes and dislikes, unique ways of communicating, the loved ones and friends in their lives. Elaine further emphasized that to truly see someone - to not lose sight of a person - is know them and their wishes and needs in a holistic way. Reflecting on disability rights history and system pressures and barriers, she fears systems will settle and only recognize certain needs, such as food, shelter, and physical care. While these needs are of course important, needs like connection to community, one’s purpose, growth, and adventure are also just as important . In supporting people to live the good life, however they envision that for themselves, we need to balance supporting existing, material needs, while also helping to support non-material needs, like belonging, relationships, trying new things, and broadening horzions. Hart shares a Buddhist concept, beginners mind. Supports can sometimes listen to individuals with old ears, and we don’t give recognition to the fact that while we’re evolving as individuals, so are the individuals that we support, evolving, day after day after day, month, after month, year after year. And so we need to listen and observe with new ears to ensure that we’re as up to date as we can possibly be with the person that’s evolved from yesterday, and so that we can better offer relationship and support to each individual. This teaching reminded us of tatawâw, a Cree saying shared with us by Hunter and Jacquelyn Cardinal that resonates strongly with our Skills vision, which means, there is room for who you are, where you are from, and who you are becoming. The becoming piece is key to not lose sight of. As paid supports and allies, part of our role is to support people in their right to dream and grow in community.
“It’s listening. You listen to what the person wants and what the person needs”
- Jan
“When we stop dreaming about what is possible, when we stop imagining a world we all share that is guided by great feelings of love, we become our biggest barrier... The other world is something we must dream of, it must first be something we feel when we close our eyes and use our imagination…”
- Robby Rodriguez, Social Justice Leader
Taken from Skills Society 2018 Annual Report
Gratitude and Honouring Legacy
We are grateful to Elaine, Hart, Jan, and Karen for their dedication, advocacy, and commitment to supporting the rights and citizenship of people with disabilities. By honoring our past, staying committed to our values, and embracing innovative approaches, we can help to carry forward the legacy of the disability rights movements. To close, we want to honor, recognize, and express our appreciation and value of the expertise and leadership of people with disabilities within our community and more broadly. They continue to shape a community that is more beautiful and just. We invite you to read the stories of some of the folks within our community throughout this report, who demonstrate leadership and from whom we learn from.
“Disability justice is simply another term for love.”
- Mia Mingus, disability activist