“Lived/living experience” — sound familiar? It’s a word on everyone’s lips, a common word we hear everywhere nowadays. In fact, I have noticed it has become much more common, perhaps even a trend in governments and non-profit organizations to include experts with lived/living experience in their work. So you may wonder — what is so special about these experts with lived/living experience?
Lived/living experience means a personal knowledge about the world gained through direct, first-hand involvement in everyday events of life. Experts with lived/living experience have first-hand knowledge as they have lived or are still living certain events. Lived/living experience is often the best way to understand the unique experience of someone in poverty, like someone who may be under-housed or struggling with transit affordability. Someone with lived/living experience will have a deeper understanding of the systemic barriers and problems faced and what needs to be done to address them, making their involvement in decision-making processes necessary for invaluable and applicable solutions for systemic change.
While it is good to involve experts with lived/living experience, there is also a need to strengthen this process to make sure that the views of experts with lived/living experience are given the same weight as those of more “traditional” experts, and to help overcome some of the barriers faced by experts with lived/living experience.
Based on my experience on advisories at both the municipal and federal levels, as well as my experience working with many non-profit advisory committees and community groups, I have come up with six ideas governments and non-profit organizations can use to better design and improve advisory councils.
1. If you are going to have an advisory council, you need experts with lived/living experience
For experts with lived/living experience, injustices and inequities are easily identified, while for those with privilege these realities may be more difficult to perceive. In the past, unfortunately, people in power always made decisions without including those who were most affected or those who would be most affected.
Recognizing and including experts with lived/living experience is important. Experts with lived/living experience can speak to the realities of poverty and help policy-makers avoid unintended consequences that might arise from their proposals. Sometimes a policy that sounds great in theory might not translate into the best results, and experts with lived/living experience can provide valuable feedback that can lead to better policies and better results.
Including experts with lived/living experience also means sharing power. It means recognizing and treating different kinds of expertise as equally valuable, instead of giving more power to the “bigger” names, such as people who represent organizations. A mix of experts (people with lived/living experience, professionals, policy analysts, academics, non-profits, and others) can work really well because these kinds of expertise can complement each other.
2. Choose experts with diverse lived/living experiences who also have networks so they can represent more than their own stories or voices in the advisory councils
Experts with lived/living experience are not all the same, so including a wide range of experts with diverse perspectives will open up new ways of looking at things. For example, I am part of an advisory group for a project linking research equity to health care practice, headed by Dr. Gary Bloch of St. Michael’s Hospital’s Family Health Team. The group includes youth and seniors, people with disabilities, Indigenous people, trans people, people of colour — people with different realities. We have had only one meeting so far, but the direction of the project has already changed and grown due to new insights and diverse experiences brought forward by the group.
Recognize that it is nearly impossible to have every kind of experience represented on a council. One way to fill in the gaps and make sure many voices are heard is to invite experts with lived/living experience who are also part of networks and talk to many different people. In this way, they can bring those views or stories as well as their own to the table for better changes in policy.
3. When seeking advice, go directly to experts with lived/living experience and not allies
Recognize and trust the advice and expertise of those with lived/living experience. It is important to emphasize this because on one occasion I had a policy-maker check in with a policy analyst to see whether he agreed with the feedback I had given after a teleconference call, instead of talking directly to me. Doing this created distrust, and undermined my understanding and perspective on the issue. Perhaps this is the common practice in the business world, but it would be better to consult me directly about my own ideas, as well as the reasons behind my feedback.
Speaking directly to experts with lived/living experience as much as possible, without feeling the need to confirm what they have said with other committee members, organizational staff, or allies, helps foster a sense of confidence and trust. The feedback collected will also be more complete and accurate this way, since experts with lived/living experience know best about their lives. They can provide information that might not be available to other participants, even allies.
4. Empower experts with lived/living experience with necessary training and support
It is a good idea to offer resources or training to help experts with lived/living experience strengthen their advocacy and networking skills. This could be communications or media training, or training to help them talk to people in their communities and gather feedback. Training on how to make deputations is also very helpful for experts who are not familiar with that process or with writing down their stories.
It is also important to recognize and accept that experts with lived/living experience have different personalities and strengths. Some might be willing to speak on camera or speak to the media, but others might not. Tailoring the training to the person’s strengths and how they want to engage is the key to enabling experts with lived/living experience to fully participate in the advisory council process.
Another suggestion would be to provide experts with lived/living experience with access to a staff person in between meetings, wherever possible. When I was part of the Ministerial Advisory Committee on Poverty, one person from the committee staff acted as my contact person. That ongoing relationship really helped support my participation because I had someone to go to with questions and concerns.
5. Make sure that experts with lived/living experience have the necessary resources to participate — like a phone plan with data, a laptop, or a tablet to use for the duration of the process
A phone, computer, or credit card are basic things in life to some people, but they are luxury things to me in deep poverty (even while on Ontario Works). It is helpful to budget for and provide these basics to experts with lived/living experience who do not have the resources, so everyone has access to the same things for the purposes of the consultation.
When I joined the Ministerial Advisory Committee on Poverty I did not have a home computer, a laptop, a phone, or a credit card. It would cost me $6 in TTC fares to take a bus to the nearest library or community centre to check my email, and I would have to buy something at a coffee shop to use their WiFi. I even missed an ad hoc last minute teleconference call, and was once asked for a credit card to secure a hotel room, even though the room was prepaid.
The Ministerial Advisory Committee’s staff worked hard to make sure there was no hindrance to my participation, including arranging for me to participate in ad hoc teleconference calls from a Service Canada office, pre-paying for hotels and flights, and providing some advance cash for meals and taxis to go back and forth for committee meetings. I really appreciated everything that was provided as without these provisions it would have been very hard for me to participate fully.
6. Provide advance notice of documents and meetings, and offer an honorarium whenever possible
In my experience, governments and most committees try their best to accommodate people’s needs and provide advance notice of upcoming meetings or calls. Sharing agendas, briefings, or other written documents ahead of time whenever possible gives experts with lived/living experience enough time to access, review, and respond to them. Where documents have a lot of specialized language or data that is not accessible to people outside that field, offering a briefing beforehand for experts with lived/living experience could help us become familiar with the documents and ensure our full participation.
The best practice if possible would be to make sure that the advisory council’s budget includes funds to provide an honorarium for those with lived/living experience. We all know it is a common practice for policy-makers or organizational staff to be paid for their time to do the job; the same should apply for experts who contribute valuable input and ideas from their lived/living experiences, as the value of these experts is the same as that of any policy-maker or organizational staff member.
I am very thankful that both the municipal and federal advisory committees I participated on set a great example by offering compensation to experts with lived/living experience for their time. I would like to see this become a standard practice for advisory councils working with experts with lived/living experience.
In conclusion, governments and non-profit organizations need to realize that good policy also requires the insight and leadership of experts with lived/living experience at all levels in order to achieve the workable transformation that is needed and long overdue. For years, experts with lived/living experience were seen as service recipients, objects of policy-making, or as research subjects. But evidence shows that decision-making models that involve affected experts with lived/living experience and prioritize their needs are typically the most sustainable and scalable.
Engaging people with lived/living experience is a two-way process. For experts with lived/living experience, participating on advisory councils is not just a way to share our perspectives or experiences; it is also a way to learn and grow in our own work by collaborating with others in the same space. And for policy-makers or organizational staff, I am sure any advisory council is enriched by the ideas and insights of experts with lived/living experience, since other experts will be able to learn from and consider new points of view.
In recent years, I have been encouraged to see more experts with lived/living experience engaging in policy work at the municipal and federal levels, as well as with non-profit organizations. I strongly believe designing advisory councils to ensure the engagement of experts with lived/living experience is the only way forward to open, transparent, transformative decision-making that has no unintended consequences.
It is my hope that the ideas above will provide best practices for governments and non-profit organizations to meaningfully engage experts with lived/living experience as a powerful tool to tackle the root causes of poverty, come up with workable solutions to help those affected, and prevent others from falling through the cracks into poverty.
This post was originally published on Maytree's website and is published with permission
To view other pieces in Maytree's ongoing series on rights-based participation, please visit the series page.