Seeking the Meaningful Inclusion of People with Disabilities: Hearts & Hands’ PATH Process in L’Arche Antigonish (Nova Scotia)
|November 30, 2019||Jaskiran Gakhal, Participedia Team|
|November 28, 2019||Julien Landry|
|June 3, 2019||Scott Fletcher, Participedia Team|
|March 6, 2019||Scott Fletcher, Participedia Team|
|September 28, 2018||Scott Fletcher, Participedia Team|
|July 20, 2018||Scott Fletcher, Participedia Team|
|July 19, 2018||Scott Fletcher, Participedia Team|
|February 2, 2018||asiavanb|
- Specific Topics
- Ability/Disability Issues
- Special Education
- Right to Adequate Housing
- Coady Institute Graduates
- “What is Hearts & Hands”
- Start Date
- End Date
- Time Limited or Repeated?
- A single, defined period of time
- Spectrum of Public Participation
- Total Number of Participants
- Open to All or Limited to Some?
- Open to All With Special Effort to Recruit Some Groups
- Targeted Demographics
- People with Disabilities
- General Types of Methods
- General Types of Tools/Techniques
- Plan, map and/or visualise options and proposals
- Facilitate dialogue, discussion, and/or deliberation
- Specific Methods, Tools & Techniques
- Planning Alternative Tomorrows With Hope (PATH)
- Facilitator Training
- Trained, Nonprofessional Facilitators
- Face-to-Face, Online, or Both
- Types of Interaction Among Participants
- Discussion, Dialogue, or Deliberation
- Acting, Drama, or Roleplay
- Information & Learning Resources
- Participant Presentations
- Decision Methods
- General Agreement/Consensus
- If Voting
- Preferential Voting
- Communication of Insights & Outcomes
- Artistic Expression
- Public Report
- New Media
- Type of Organizer/Manager
- International Organization
- Type of Funder
- International Organization
- Evidence of Impact
- Implementers of Change
- Lay Public
- Stakeholder Organizations
People with and without intellectual disabilities used the “Planning Alternative Tomorrows with Hope” technique to rethink the Hearts & Hands community arts program and to increase the engagement of people living with disabilities in community decisions.
Problems and Purpose
L’Arche is an international federation of communities where people living with and without intellectual disabilities share life together (“the community”). In 2015, L’Arche Antigonish, located in Antigonish, Nova Scotia, invited people with intellectual disabilities (“core members”) to be part of a process to create a community-held vision for their art program, known as Hearts & Hands. As they are key stakeholders and contributors to the art program, including people with disabilities (PWDs) in this conversation was critical.
Prior to this process, there was tension within the community around the purpose, vision, and organization of Hearts & Hands. In addition, there was a lack of clarity on the most effective way to engage core members in community decisions and a belief that insufficient human resources was stalling their ability to invest in trying new techniques. In September 2015, L’Arche Antigonish began working with an OceanPath Fellow—a local youth participating in an experiential education program focused on community development leadership. The Planning Alternative Tomorrows with Hope (PATH) process was pursued, with the Fellow as facilitator, to 1) address the tensions that existed around the organization, purpose, and vision of the Hearts & Hands community art program, and 2) to do so in a way that was inclusive of core members - people with intellectual disabilities.
Background History and Context
Ableism—discrimination or prejudice against people with disabilities (PWDs)—is a barrier to participation that is visible in many contexts and invisible in even more. The tendency to silence the voices of PWDs can come from assumptions of their inability to contribute in meaningful ways and/or from a lack of willingness to invest the resources necessary to seek out innovative ways to engage them.
The L’Arche Antigonish community grappled with how to meaningfully engage core members in conversations about activities that impacted them directly. In other words, the same societal tendencies to exclude were evident within this community despite it being an organization founded upon the desire to foster inclusion.
Heart & Hands, L’Arche Antigonish’s art program, represented an opportunity to address these challenges, given the existing relationship with the OceanPath Fellow, who was willing to provide the human resources to facilitate the process. Since there was no precedent for an intentionally inclusive approach beyond their core principles about “living in community,” the initiative represented an exciting innovation for the community.
From the outset, the Fellow sought to move forward in a way that fostered true inclusion within the community and to push back against societal tendencies to exclude PWDs from decision-making processes. They invited the entire L’Arche community to a visioning session for Hearts & Hands, creating opportunities for people with and without intellectual disabilities to contribute to a conversation about the direction they would like to have their art program take. The Fellow was intentional about receiving guidance from those with significant expertise in the area of social inclusion and building accessible spaces for PWDs during this time.
Organizing, Supporting, and Funding Entities
The Fellow’s time with L’Arche Antigonish was funded by the Pathy Family Foundation, through the OceanPath Fellowship and in partnership with the Coady International Institute. An OceanPath Fellowship provides up to $25,000 (CDN) in funding to recent graduates to facilitate positive change in a community they are connected to over a 9-month period. The Coady International Institute provides mentorship, education, and support. The initiative was community-led, while the Fellow facilitated and managed the work. Over the nine months, space was provided in-kind by the Coady International Institute, and other resources (supplies, graphic facilitation, etc.) were paid for through the Fellowship.
L’Arche communities globally are funded differently depending on where they are located. In Canada, L’Arche communities are supported by their provincial governments, but also rely heavily on charitable donations through the L’Arche Canada Foundation. The Hearts & Hands program at L’Arche Antigonish falls under the broader L’Arche community’s budget. Despite being supported by the L’Arche Antigonish community and its foundation, they also rely on the profits generated from the art they sell and the performances they give in the community (e.g., an annual Christmas play). Hearts & Hands is also supported by a dedicated team of volunteers composed of both artists from the broader Antigonish community and students.
Participant Recruitment and Selection
At the initial visioning process using the Planning Alternatives Together with Hope (PATH) methodology, the entire L’Arche Antigonish community was invited, which included core members, staff (“assistants”), members of the leadership team, board members, and volunteers who had an extensive relationship with the community. The intent was to make everyone feel welcome and to put systems in place to allow people to participate in ways that worked for them. For example, non-verbal communicators were given pictures to convey their ideas, participants with hearing impairments were assisted via sign language interpretation, and a graphic facilitation technique was used so that ideas would be portrayed using pictures rather than words. In addition, volunteers took note of the percentage of speaking time that was given to able-bodied participants versus participants with disabilities as a conscious effort to raise the community’s awareness of who tends to dominate decision-making processes.
Following the initial visioning process, multiple conversations were had in order to continue to navigate tensions surrounding the vision and direction of the art program. The community decided who would be present at these follow-up meetings.
Methods and Tools Used
The method used for the initial visioning session, called PATH, is a participatory, person-centered planning tool developed by Jack Pearpoint, Marsha Forrest, and John O’Brien (see External Links section for more detail and resources). PATH was chosen for the initial visioning session due to its use of graphic facilitation to convey ideas, and its structure, which supports participants to focus on a dream they have and then grounds them in steps they will take to make it happen. It builds excitement around a vision, which was exactly what was needed in the initial stages of discussing the future of the art program. Anyone trained in the process of facilitating PATH spends an average of 40 hours in class, with ample opportunity to implement the tool and receive peer and instructor feedback. In this case, a fully trained facilitator was unavailable for the meeting, so the Fellow received guidance from a trained individual with over 20 years of experience in using PATH prior to facilitating the session. A graphic facilitator who had experience using this tool was present to facilitate with the Fellow.
What Went on: Process, Interaction, and Participation
In planning and identifying goals for the Hearts & Hands initiative, it was critical for the community to have a meaningful voice in making the initial decisions about how time was invested and how the Fellowship resources were allocated. However, the Fellow did not have any innovative ideas on how to achieve this initially, wondering how could a space be created for the first time in this particular L’Arche community in which people with and without intellectual disabilities were equally invited to contribute ideas?
To achieve this, the Fellow opted to use PATH, given its common use in other communities of PWDs due to its intentional inclusivity and given the training and mentorship available through the Coady Institute. Conversations were held with the community to ensure people at all levels of authority within the organization were willing to try this new method of decision-making. A date was set that worked well within the community calendar, all community members were invited, and ways to make this process as inclusive as possible were brainstormed.
During the actual PATH process and in follow-up meetings, the community faced the challenge of the conversation being dominated by able-bodied participants. For example, during the PATH process, able-bodied participants spoke 74% of the time, while participants with disabilities spoke 26% of the time. Acknowledging this reality allowed the community to begin to ask questions about how to more effectively include core members in decision-making processes. As facilitator, it was difficult for the Fellow to steer the conversation back to being inclusive without interrupting the natural flow of brainstorming. These meetings reinforced existing power relations between those who hold more power either because of their position within the organization (e.g., board members, leadership team members) or their level of ability (e.g., able-bodied staff), and those who do not (people with intellectual disabilities). Acknowledging this power differential, the Fellow met with as many core members as possible prior to the PATH process so that there would be an opportunity to contribute ideas in a smaller group setting. This allowed individuals with any hesitancy about speaking up in front of a group to participate in a safer space, and allowed those who could not be present at the actual PATH session to contribute to the conversation.
As key stakeholders in the art program, it was critical to include PWDs in decision-making processes, as they are often excluded from decisions that directly impact their lives due to a lack of clarity on how to facilitate meaningful inclusion. The PATH process was the first instance where the entire community made a collaborative decision to combat this; therefore, it enabled the community to witness the transformative power of participants and decision-makers coming together to exchange ideas.
Influence, Outcomes, and Effects
The intended outcomes of the initiative were twofold: to address tensions that existed around the organization, purpose, and vision of the Hearts & Hands community art program, and to do it in a way that was inclusive of core members.
An inclusive vision for Hearts & Hands
The first outcome was largely achieved, in that the initial draft of a new vision for Hearts & Hands emerged from the PATH process. Included in this vision statement were clarity statements defining where Hearts & Hands fit within the broader L’Arche community and value statements that articulated the ideas shared in the PATH session. For example, it clarifies that while Hearts & Hands is a name and brand for the creative expression that happens at L’Arche Antigonish, it is also the connectivity that people feel to one another when expressing themselves. It also includes statements about inclusion and using creativity as a way for people to express their voice; for example, “every creative expression is welcome and valued” (L’Arche Antigonish, 2018).
Today, Hearts & Hands is seen within L’Arche Antigonish as an inclusive program in which community members feel free to contribute in ways that are meaningful to them. An unexpected, downstream effect of this is that the community is participating in more outreach activities due to the hiring of an outreach coordinator from a sustainable human resource investment made by the community and the increased buy-in and support of the art program from all levels of power. Another goal articulated at the PATH process by core members was the creation of a drama group, which was successfully initiated. In addition, the final outcome to the visioning process was the creation of a short film (see link below) that both honoured the process the community had gone through and put the new vision in an accessible format within which people could see their lived experiences reflected.
Towards broader inclusion at L’Arche Antigonish
While these outcomes are quite positive, they only speak to the first objective of the process. Less tangible outcomes exemplify the community’s movement towards the goal of including people with disabilities in central decision-making processes. For example, there were attitudinal shifts from those in positions of power, such as acknowledging that inclusion is something the community still needs to improve upon and that the leadership team has been intentional about making inclusion and voice a more serious priority. Further, there is continued openness towards using PATH as a decision-making tool in the future. For example, in 2017, L’Arche Antigonish facilitated another PATH process to discuss the creation of a new community space, which was largely successful and built on the learnings derived from the 2015 process. In fact, feedback from the facilitator of the 2017 process (the same person who initially trained the Fellow) was that the discussion was very lively and core members spoke closer to 50% of the time, up from 26% in 2015. There was less deference to people who traditionally hold power and non-disabled participants rarely intervened when a PWD spoke. The facilitators expected that the first exposure to PATH would be the most challenging, but in this case, it led to an extremely positive outcome.
Increasing core members’ voice and agency
In addition, there were examples of PWDs vocalizing their desire to be invited to follow up on conversations around Hearts & Hands and requesting to meet with the Fellow to provide their input. The community also saw the Hearts & Hands subcommittee restructure their meetings such that the voices of PWDs were prioritized (e.g., PWDs are first to speak and are prepared for the meeting beforehand). These outcomes are meaningful because they speak to attitudinal shifts within the community and to transformations in invisible power; that is, the normalized and internalized sense of powerlessness that often limit the ability of marginalized groups to speak out (PowerCube, n.d.).
Analysis and Lessons Learned
The following lessons were gleaned from this experience:
Transforming community through inclusive participation
Participation was crucial to the achievement of the above outcomes. The decision to foster participation by using the PATH process at the beginning of the Fellowship guided the remainder of the Fellow’s time in community. It enabled the entire community to become immediately aware of the tensions surrounding Hearts & Hands and created buy-in to address these tensions. Inviting every community member to the initial PATH process demonstrated that it is possible to be productive in these kinds of spaces and provided a living example of the richness that can be added to dialogue when PWDs are invited to participate.
Meaningful inclusion takes time
A key barrier to the sustainable implementation of inclusive practices within this community can be characterized as “the challenge of time.” With the methods available, there is often a trade-off between efficiency and inclusion. For example, are individuals and organizations willing to set aside an hour and a half to meaningfully include people with disabilities in a meeting that may otherwise take 10 minutes? For many organizations, the answer is not an enthusiastic “yes.” This was a huge challenge for the community. A caveat to this is that simply making meetings longer is not sufficient to addressing these challenges. Some core members are not interested in attending meetings, so it is important to acknowledge that people should be given the opportunity to participate based on their time and energy. It raises questions about how meetings are structured in general and whether it needs to be changed in order to engage PWDs effectively, while acknowledging that they may not be interested in spending an hour and a half in a meeting either. Time will continue to represent a challenge for anyone working towards inclusion, or towards applying a rights-based framework and having those who hold power recognize and acknowledge it. Investments in innovative practices to facilitate decision-making will be necessary to overcome this challenge.
Access and the importance of lived experience: moving beyond “inclusion”
It is also important to acknowledge that the idea of promoting concrete inclusionary practices is often an innovative, if not transformative, one. Even the word “inclusion” increasingly is objected to, as it implies being invited into spaces that have not been designed or informed by the lived experience of PWDs. The silencing of PWDs within our society and the tendency to prioritize the voices of able-bodied individuals is pervasive and well-documented in the theories describing the social model of disability. In this social model, disability is caused by the way society is organized, rather than by a person’s impairment or difference, and actions focus on removing barriers that restrict choices for this population. For instance, advisory councils are often set up by governments and communities to involve PWDs in policy discussion, yet are also fraught with a multitude of barriers that prevent PWDs from fully participating (Frawley & Bigby, 2011). Caldwell, Hauss, and Stark (2009) list some of the necessary supports to make these committees effective, including continuous monitoring of meeting accessibility, leadership development in recruiting self-advocates to participate, and attitudinal shifts such as participation not being tokenistic such that participants feel their voices are being taken seriously. In addition, the lifelong internalization of stereotypes and systemic exclusion is an important barrier to participation for PWDs, and researchers including as those cited above stress the importance of committing to both the tangible (i.e., accessibility) and intangible (i.e., inclusive attitude) supports in making participation meaningful.
Given the above, the reality is that meaningful inclusion is difficult. It is often unclear what steps to take to start tackling these representation and participation gaps. It was honorable of those in positions of authority within L’Arche Antigonish to start a dialogue about these questions as a first step.
Inclusion is not just about the tangible
Key desired outcomes from this process centered on attitudinal and cultural shifts within the community. These included:
- instilling a sense within the community that participation is worth the human resources investment;
- having PWDs now see their potential as central decision-makers within their community; and
- having able-bodied staff recognize their role in fostering inclusion in their day-to-day lives.
To get a sense of whether these were achieved, various forms of evaluation were completed, including (a) outcome harvesting (Saferworld, 2016), which documents less tangible behavioural and attitudinal shifts throughout an initiative; (b) personal reflections completed by the Fellow; and (c) exit interviews conducted by the Fellow with a diverse range of community stakeholders at the end of the process. From these evaluations, the success of this initiative lied in the less tangible changes, such as attitudinal shifts around inclusion within the community.
Balancing between neutrality and building trust
Since this initiative was catalyzed by the Fellow, a facilitator who held prior relationships with this community, it was challenging to maintain neutrality throughout the process. That said, these prior relationships were central to facilitating an inclusive dialogue. Without these relationships of trust, core members may have been less open to engaging due to the variety of barriers they face in participating. It also enabled the Fellow to have meaningful one-on-one dialogues with core members throughout the process in order to provide adequate time and space to participate in ways that were meaningful to them.
The Fellow, as an external facilitator, was also made aware of communication gaps within the community. Based on diverse lived experiences, people at different levels of organizational power held different values and perspectives on the best approach to these issues, and they faced challenges in hearing one another’s viewpoints. From this point of view, not being perceived as neutral became a challenge, as the Fellow attempted to mitigate these communication barriers and facilitate productive conversations between people with unique viewpoints.
Potential ripples out to the broader community
Any long-term influences on core members within their broader context (i.e., beyond the L’Arche Antigonish community) are yet to be seen. Because the L’Arche community extends beyond those who live and work onsite, the transformations set in motion through this process have a potential for influence beyond the organization. The attitudinal and behaviour changes, as well as the shifts in power dynamics within the community could perhaps extend to challenge power relations and exclusionary dynamics outside the organization, as these same community members also engage in the broader society on a daily basis. In order to move towards this, long-term and sustained efforts need to be made by those with authority both within the organization and the broader Antigonish community to tackle patterns of exclusion so that people with disabilities continue to see their voices considered in decision-making.
Caldwell, J., Hauss, S., & Stark, B. (2009). Participation of individuals with developmental disabilities and families on advisory boards and committees. Journal of Disability Policy Studies, 20(2), 101–109. doi:10.1177/1044207308327744
Frawley, P., & Bigby, C. (2011). Inclusion in political and public life: The experiences of people with intellectual disability on government disability advisory bodies in Australia. Journal of Intellectual & Developmental Disability, 36(1), 27–38. doi:10.3109/13668250.2010.549465
L’Arche Antigonish (2018). Hearts & Hands. Retrieved from https://www.larcheantigonish.ca/hearts-hands/
Power Cube (n.d.). Invisible power. Retrieved from http://www.powercube.net/analyse-power/forms-of-power/invisible-power/
Saferworld (2016, January). Doing things differently: Rethinking monitoring and evaluation. Retrieved from https://www.saferworld.org.uk/resources/publications/1027-doing-things-differently-rethinking-monitoring-and-evaluation-to-understand-change
L’Arche International: https://www.larche.org/
L’Arche Antigonish: http://www.larcheantigonish.ca/
The OceanPath Fellowship: https://coadynet.stfx.ca/oceanpath [BROKEN LINK]
PATH Process Resources:
http://www.inclusion.com/bkpathworkbook.html [DEAD LINK]
Fellowship Blog Entries:
This case was produced and submitted by a graduate of the Coady International Institute at St. Francis Xavier University with the support of its staff, Julien Landry & Rachel Garbary.