Lived Experience Voices: Not About Us, Without Us
Lived Experience Voices
Not About Us, Without Us
Debera Gau, lived experience advocate
Debera reflects on two decades of advocacy, the blame and shame she faced along the way, and why "not about us, without us" is more than a slogan.
“Not about us, without us” is more than a slogan. First used widely by the disability rights movement, it reminds us that people must be included in decisions that affect their lives. For those of us living with obesity or overweight, this message is deeply personal.
Patient voices belong not only in exam rooms, but also in the rooms where policies are written, research priorities are set, and systems of care are shaped. Lived experience brings urgency, truth, and humanity to conversations that too often happen without us.
We deserve to be heard, respected, and included
My name is Debera Gau. I am a member of the Obesity Action Coalition, serve on its National Board of Directors, and participate in Pfizer’s Lived Experience Team, where I advocate in the obesity space for myself and for all people living with obesity or overweight.
When I heard “Not about us, without us” at the World Obesity Federation Summit, it stayed with me. It captured what so many patients know firsthand: we deserve to be heard, respected, and included in the decisions that shape our care.
My obesity advocacy journey
My obesity advocacy journey began in 2013, but I had been advocating for myself since 2001, when I was formally diagnosed with obesity. That diagnosis moved me away from the familiar cycle of “diet and exercise” advice and toward actual treatment. It also helped me understand how often people living with obesity are reduced to a number on a scale or BMI chart.
For years, I experienced blame and shame. I was told I was not trying hard enough, not motivated enough, or not committed enough to becoming healthier. Those messages were painful, and they were wrong. Obesity is a chronic, complex disease, and people living with it deserve evidence-based care, compassion, and dignity.
I saw evidence of progress
Thanks to a scholarship, I attended the WOF Summit in Mexico City for the first time. After many years of advocacy, I had begun to feel as though I was repeating myself and that the voices of people living with obesity were still not being heard. I hoped the summit would give me a renewed sense of commitment. It gave me much more than that.
I met advocates from around the world and heard stories that, despite differences in country or culture, shared familiar themes: stigma, bias, shame, blame, resilience, and hope. I also saw evidence of progress. When medical professionals, policymakers, and communities include the voices of those with lived experience, attitudes begin to shift and better policies become possible.
There is still much work to do, but momentum is building. People living with obesity are speaking out in many languages and many countries. We are reminding the world that obesity cannot be shamed away or blamed away. Real change begins when those most affected help shape the future.
Let’s keep making space for lived experience at every table - because meaningful change happens when policies, research, and care are shaped with us, not simply about us.
Blog by Debera Gau, lived experience advocate
Lived experience voices
Lived Experience Voices is World Obesity Federation's series sharing first-hand stories from people living with obesity around the world, in their own words. Have a story you'd like to share? We'd love to hear from you - get in touch with our Communications team.
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