Is It Still Volunteering? Valuing Lived Experience

AUDIO VERSION

By Linda Bartram

Volunteering is increasingly being shaped by accessibility, technology, and a stronger emphasis on inclusion, rather than charity. The focus is less on “helping” in a traditional sense and more on removing barriers and the principle of autonomy.  It is recognized that the most effective volunteers are those who listen carefully, follow the lead of the person they are supporting, and understand that inclusion is about equal participation and respect, not just assistance.

Volunteering today offers a range of meaningful advantages for persons with disabilities, many of which go beyond the traditional idea of “giving back.” One of the most significant benefits is the opportunity to build skills and experience in a flexible, supportive environment. Whether through remote roles or in-person placements with improved accessibility, volunteers can develop communication, leadership, and technical skills that may translate into education or employment opportunities. Just as importantly, volunteering allows individuals to explore their interests on their own terms, with accommodations and adaptive tools more widely accepted as standard practice rather than exceptions.

Another key advantage for all volunteers, is the sense of connection and influence that volunteering can provide. Volunteering opens doors to social networks, reduces isolation, and creates a stronger sense of belonging in the community.

In addition, for persons with disabilities, volunteering offers a platform to shape change, bringing lived experience into decision-making, improving accessibility, and challenging outdated assumptions. In 2026, organizations are increasingly recognizing that volunteers with disabilities are not just participants but contributors whose insights lead to better, more inclusive programs and services.  Volunteers with disabilities are often central to shaping policies, evaluating services, and improving accessibility, whether by testing websites, co-leading workshops, or providing feedback on public spaces and events.

Overall, volunteering for people with disabilities in 2026 looks more like active participation, leadership, and influence. This begs the question: If persons with disabilities are providing valued lived experience, should they not be compensated?

When someone is contributing lived experience in a way that shapes policy, improves services, trains staff, or evaluates accessibility, that’s not just “volunteering” in the traditional sense. It’s specialized knowledge. Calling it “volunteering” in such situations can sometimes blur the line and risk undervaluing expertise, especially when others in similar advisory or consulting roles would be paid.

That said, it’s not an all-or-nothing situation. Some people with disabilities choose to volunteer for the same reasons anyone else does: to connect with their community, support a cause, or gain experience. The key issue is choice and clarity. If the role is genuinely voluntary, with clear boundaries and mutual benefit, that can be appropriate. But if the organization is relying on lived experience to inform decisions, design programs, or meet inclusion goals, then compensation is a more equitable and respectful approach. If the contribution is service-oriented and optional, volunteering can make sense. If, however, the contribution is advisory, consultative, or essential to organizational outcomes, it should be treated, and paid, as work. 

Consequently, there’s a growing push in disability advocacy circles to move toward “nothing about us without us”. Otherwise, organizations risk expecting people with disabilities to carry the burden of improving systems without recognizing the real value of that contribution.

As these conversations continue, one thing remains clear: lived experience is essential to building inclusive systems. Recognizing, respecting, and appropriately valuing that contribution, whether through volunteering, compensation, or both, is part of that ongoing work.