People with Lived Experience, Family Members: Two Surveys Want Your Voice


So many of us in the Mad in America community feel and express frustration with mainstream coverage of mental health, which too often falls in line with the drug-focused disease model and its “chemical imbalance” falsehoods. As a longtime journalist, I know how hard it is to report and write on deadline—but I also know how critical it is to dig deeply and widely in an effort to uncover the truth, asking those affected to share their personal insights.

This is why ProPublica’s open call-out seeking personal experiences is such a significant move, inviting both people who work in mental healthcare and those who receive it to offer their perspectives. As it explains at the top of the page, detailing the effort and the form to be filled out: “ProPublica’s reporters want to talk to mental health providers, health insurance insiders and patients “—bold italics here and below are mine— “as we examine the U.S. mental health care system.”

Further, the reporters write, “If you have tried to navigate this system, either by yourself or on behalf of a friend or family member, we hope to learn from you too. Your insights help us understand the consequences of the structure and delivery of mental health care today.”

Asking people with lived experience to tell their stories for a major mainstream outlet of investigative journalism is a big deal. A really, really big deal. The questionnaire isn’t long, mostly asking for basic info and demographics, but it also offers room to upload documents as well as two wide-open questions asking folks to share their personal stories and insights: ”Is there anything else you think we should know?” and “Do you have any advice for families trying to navigate this system based on your own experience?” 

Also available online is a survey recently posted for psychiatric survivors and loved ones, this one from Survivors and Families Empoweredthe group created by Ron Bassman to educate and connect. (I’ll be posting an update on SAFE soon.) In addition, psychologists with the University of East London have issued their own callout for a survey of “people who have had Electroconvulsive Therapy (ECT), and their family and friends,” detailed in a piece for MIA by researcher John Read in which he describes the blowback from some psychiatrists.

Regarding the ProPublica callout, the reporters emphasize that all the information submitted is private and won’t be shared; if they want to speak with someone directly, they’ll reach out: “We appreciate you sharing your story, and we take your privacy seriously. We are gathering these stories for the purposes of our reporting and will contact you if we wish to publish any part of your story. We are the only ones reading what you submit. 

If you would prefer to use an encrypted app, see our advice at You can also email our reporting team. You can fill out the form below or at”

However you choose to share your stories—and whether or not the ProPublica journalists follow up with you—this is an occasion for unheard voices to directly influence mainstream coverage from perspectives too often ignored. Whether you tell of your own experiences or the trials endured by a loved one, these reporters will read what you write. And, hopefully, their perception of the existing paradigm will grow and change, enlightened by the power of personal stories. Yours could influence their thinking. 

Of course I’m always here to read your stories, too. Mad in the Family and MIA are important platforms for unheard voices—so never hesitate to reach out to me, now as ever, with something you want to say. 

—Amy Biancolli, Family Editor 

[email protected]


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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.


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