Meaningful engagement is more complicated than simply inviting people with lived experience to the table. In fact, engagement conducted with unethical or outdated models can cause as much harm as exclusion. Time must be taken to ensure team members feel heard and respected, and critically, have the capacity to spark genuine change. Tokenism happens when people with lived experience are included to “check a box” or otherwise provide window dressing to a project without true inclusion. An ethical engagement process, in contrast, involves intentional sharing of power, labour, and respect.
The EST recommends the following strategies for preventing tokenism and ensuring effective and ethical engagement.
Clear Scope, Purpose, and Expectations
The purpose of engagement must be incredibly clear to all parties involved before it can proceed. The EST uses a sequenced approach to establish the terms of a working relationship.
- Requests for services are sent to the Engagement Manager. If prospective partners have questions about options for engagement, they can request a free consultation.
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Early screening can be done through the Engagement Manager to preserve the team’s time and capacity. While Engagement Managers should default to presenting opportunities to the team for discussion, major fit issues (i.e. clear tokenization, subject matter well outside the scope and expertise of the group, scheduling barriers, etc.) can be pre-screened.
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The Engagement Manager asks prospective partners to describe the ideal role of the EST in three key areas:
- Intent: What is your intent for this engagement? Why are you interested in collaborating?
- Influence: What level of influence does the EST have? Are there areas that cannot be altered (i.e. in research, has this project cleared ethics? In community services, are there funder obligations that cannot be altered? In government, are any mandates written in stone?)
- Accountability: Are there accountability measures in place? Can we expect you to report back on the results of the engagement?
- The proposed engagement opportunity is then brought to the team for discussion. This gives team members an opportunity to talk out any concerns or questions prior to the engagement itself, and allows team members discretion in the opportunities they will and won’t accept.
Engagement must be grounded in clarity. Before any consultation or collaborative process, the role of lived experience contributors should be defined in plain language — what they are being asked to do, what influence they will have, what decisions are on the table, and what is not within scope. This transparency avoids performative involvement and enables contributors to make informed choices about participation.
The Power of No
Saying no to opportunities for engagement is controversial. Many argue that any opportunity to get in the door is better than none at all. From the perspective of an organisation supporting staff with lived experience, the danger of forcing working relationships that do not feel safe or productive to team members cannot be overstated. It is essential that team members maintain a degree of discretion.
With clarity around team mission and values, team members will often err on the side of working through complicated engagement models. In our experience, saying no to an opportunity is very rare, and often with very good cause. Decisions are made through a flexible consensus model and open discussion, with those closest to the organization or subject matter involved leading the conversation.
While there is tremendous power in “no”, where possible, the “no” should never be offered in isolation. In practice, “no” may be something closer to “not until”. For example:
- An organization asks for consultation on an event scheduled for next week. The team recognizes there would not be time to incorporate any feedback offered, and instead invites the organization back to consult earlier next year.
- An organization begins the consultation process on the development of a new program. The EST identifies potential safety concerns, and asks the organization to step back to address the safety issues before returning for further collaboration.
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A board or working group wants support recruiting members with lived experience, but have not yet adjusted their policies and practices to adequately compensate and support these members. The EST asks them to return once those practices have been established, or invites them to write those policies collaboratively.
In practice, we are setting the bar for our partners to rise and meet. The value of lived experience engagement is well accepted by the sector, it’s the “how” that is often complicated. Standards give potential partners an understanding of how people with lived experience expect to be treated, and an understanding of the scope of work that should be set for engagements of this kind.
Multiple Members Present by Default
“No one individual should be expected to represent the entirety of a community.”
There is strength in numbers. When we ask a person with lived experience to quite literally act as the token lived expert in a given room, we are creating the conditions needed for “othering”. No one individual should be expected to represent the of a community. In the EST
model, when at all possible, organizations visiting for consultations are welcomed into the team space. This gives team members the security of one’s home turf, and sets the working relationship tone. When members are invited into the community to facilitate focus groups, attend events, or engage in public speaking, we default to attending in pairs. This strategy is not just protective against tokenism, but also improves the range of insights we’re able to offer.
Team Spaces for Debrief, Discussion, and Support
Historically, engagement has been thought of as a time limited interaction. People with lived experience are invited to a meeting, leave, and might be invited again in the future. Ethical engagement puts as much effort into what happens before and after the meeting as it does into the meeting itself. Picture a working group with members from the social sector, the bureaucracy, and people with lived experience. We often take for granted that the bureaucrats and sector staff in attendance likely recognize each other. They have certainly been briefed on the scope of the group before joining. They’ll bring news from each meeting back to their colleagues, and will chat with their supervisor about strategies and next steps. This is not always the case for people with lived experience.
The EST uses two hour weekly meetings to establish a core team space. These are always held virtually, and include debriefs on the previous week’s work. This not only gives team members
an understanding of what others on the team are tackling between meetings, but gives everyone an opportunity to talk out emerging issues, celebrate successes, and build a strong team identity. Additional meetings are often booked to bookend major events, strategize for upcoming changes, review speaking notes, etc. It’s equally important to occasionally meet for the sake of meeting. One on one check-ins with supervisors, team celebratory lunches, and other staples of office life are equally important for staff with lived experience and cannot be overlooked.
Modeling Organizational Values of Inclusion
Engagement should reflect and reinforce the organization’s core values, not stand in opposition to them. The reality is that true inclusion requires culture change to such an extent that it must become the core of your practice. This takes buy-in at all levels to be effective. This includes practicing humility, honouring lived experience as a form of expertise, and ensuring that meeting structures, facilitation practices, and decision-making processes uphold inclusion. Ethical engagement is not just about who is involved but how the work is done.
“We constantly must ask ourselves if we’re practicing what we preach.”
Being a trauma-informed and inclusive employer ultimately benefits everyone in the workplace. We do not recommend using two sets of policies and procedures, but rather take the lessons you’ve learned through lived experience engagement strategies and apply them to every staff member. This is protective against tokenism, but also recognizes the diversity of experiences held by every staff member.
During one consultation, an organization asked for the EST’s support for writing harm reduction policies for a peer team. They’d previously had policies requiring abstinence for all staff members and wanted to write an exclusion. The EST asked “if you’ve already made the decision that this should be treated as a private health matter for some staff, why not apply that to all staff?”. Disconnects between the values of an employer and the employee policies they use are common, and are often a sign of a team stuck in the status quo. A gentle nudge towards ethics and inclusion can unify teams and significantly improve work satisfaction. No one wants to work in an environment where the rules apply differently between employees.
It is also important that you, as the organization employing lived experts, continue to model your commitment to true co-design while attending to the other operations and programs you offer. The most common way people with lived experience are included in systems work is through consultation, usually after key decisions have already been made. Lived experience input is used primarily to validate or refine existing work. While the Alliance is committed to a co-design approach, we know that it is easy to slip back into familiar practices, particularly under time or system pressures. We constantly must ask ourselves if we’re practicing what we preach. Are the EST members hearing about Alliance initiatives before work plans are written? If they haven’t been invited to an event alongside other staff, why? Are we utilizing expertise fairly and effectively?
“The goal is not better consultation, but rather lived experience leadership and co-design at every level. The Alliance and the EST must remain in a constant process of learning, reflecting, and adapting to ensure co-design remains the default, not the exception.”
Sometimes, what we call “co-design” would be more accurately described as an improved approach to consultation. The goal is not better consultation, but rather lived experience leadership and co-design at every level. The Alliance and the EST must remain in a constant process of learning, reflecting, and adapting to ensure co-design remains the default, not the exception. As the employer of a lived experience team, we must never consider the job done.
An underutilized team can, itself, become tokenizing. Part of modeling your organizational values of inclusion means acting aspirationally. We must always be pushing ourselves towards a higher standard of inclusion and collaboration.