The inclusion of lived experience experts (LEEs) within nonprofits impacts beneficiaries on 3 levels: the individual, community and policy levels. On the individual level, LEEs serve as role models to current program participants, provide their feedback to staff, including which methodology contributes to their own willingness to change, influence organizational accountability practices, increase donor willingness to fund overhead expenses, influence volunteer management protocol, and inform fundraising campaign design. On the community level, lived experience experts inform nonprofits of potential barriers to accessing the service array and provide collective accounts of their experiences to work with nonprofits jointly to address social problems impacting them. On the policy level, LEEs influence policy advocacy by providing nonprofits with information about their perceived needs and barriers, which organizations are then able to advocate for from an informed position.

LEEs who engage with nonprofits’ “systems change activities” report feeling more committed to their own therapeutic recovery, receive meaningful job skills and leadership experience, improving LEEs' perceptions about authority figures, and empowering LEEs to continue working to improve their communities after engaging with the nonprofit.

Despite the many benefits of including LEEs in organizational governance, it appears that most organizations are still not equipped to incorporate them into every level. Van Djick and Steen identify challenges of incorporating lived experience experts including practical challenges, emotional challenges, the risk of going native, red tape challenges, and integration challenges.

Stacey Sutherland, Director of Training and Resources United to Stop Trafficking, a program within the Arizona Anti-Trafficking Network, provided insight into the benefits and challenges faced by her organization when incorporating lived experience experts. She encouraged nonprofit leaders to be considerate when utilizing lived experience experts. Through her organization’s experience with incorporating LEEs into multiple levels of inclusion, Ms. Sutherland shared that nonprofits should not rely solely on only one LEE as their survivor voice. Instead, leaders should seek out consultation from a diverse array of lived experience experts and consider creating a lived experience advisory council. Further, she explained that LEE employment should not require the public sharing of their lived experience unless this is included in the job description. Most importantly, any lived experience experts engaging with nonprofits must be compensated for their contributions.

Nonprofits seeking to incorporate lived experience experts can implement several practices for ethical LEE inclusion like skills matching, stewardship of LEEs and being willing to disengage with the relationship if necessary.  To incorporate lived experience experts into all domains of a nonprofit, organizations can:

Testimonials/Story-telling

• Listen to their voices about preferred imagery and language
• Compensate them for story-telling using standard federal rates
• Give them approval on fundraising campaigns

Employment

• Implement flexible policies including reconsidering hiring requirements
• Create a job opening only for LEEs
• Allow LEEs to dictate how, when and to whom they would like to share their lived experience history
• Provide trauma-informed management
• Foster a culture where existing staff view LEEs as peers

Board governance

• Create an advisory council empowered with legitimate decision-making authority
• Do rely on only one “token” LEE

Nonprofits are more effective when provided input from lived experience experts. The inclusion of lived experience experts into leadership and management is necessary for mission adherence and very possible through a flexible and trauma-informed approach.

Sarah Way is a 2023 graduate of the Masters of Nonprofit Leadership and Management
program at Arizona State University and an Arizona nonprofit professional who has worked in the anti-sex trafficking field for the last 12 years. In her current role, she works with communities to build collaborative processes for treating children who have been sexually exploited. She brings extensive knowledge about domestic sex trafficking, having worked directly with approximately 400 survivors of sex trafficking and the commercial sex industry during her tenure as the Human Trafficking Victim Advocate with the Phoenix PD Human Exploitation and Trafficking Unit. Sarah is also a consultant for Arizona State University’s Sex Trafficking Intervention and Research Office where she trains about best practices for street outreach to sex trafficking victims.

Image by Lillian Finley

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