In a recent blog in the Huffington Post in which he supports the Murphy Bill, HR. 3717, D.J. Jaffe writes—“Rather than advocate for the seriously ill, they [consumer groups and government agencies] advocate for anyone with “lived experience.” Jaffe derides the phrase “people with lived experience” of mood swings, fear, visions and voices, disorganized thinking, utter despair: emotions and mental states on the human continuum of experience.
Perhaps he doesn’t know why this expression of “lived experience” came about. To explain that let’s review what we have been called: from wingnuts, crazies, lunatics and dingbats to inmates, patients, survivors, recipients, consumers, clients and beneficiaries.
Bonnie Schell, Asheville, NC
In this article Bonnie Schell explains how persons are not only labeled by psychiatrists, but by our society and particularly providers of services and government mental health agencies. Her article should be read not only by her peers, but also by those who would use language to deride us and thus divide us--including D. J. Jaffe, an adman from New York City.
On “lived experience” from Bonnie Schell of Asheville, NC.
We were called “mental patients,” like heart or cancer patients, except that the latter elicited sympathy and were considered heroic. We have been called, and called ourselves, “ex-patients.” We have called ourselves “survivors” – referring to our mental state as well as the treatments: the latest inadequately tested pills prescribed in a different “cocktail” by every different doctor we have seen, as well as survivors of sterilization, harmful therapies, dis-respect and, in some cases, violence on the streets and in jails and institutions of mental hygiene or mental disease.
In the 1960s-’70s, consumer/survivor/ex-patient was simplified to "c/s/x". The term “client” implied that we could shop for a provider and then fire them if they didn’t meet our needs, without repercussions or retaliation. The term was short-lived.
In recent history, we have been called “consumers,” conjuring up capacious users of services, public funds, private wealth, Ralph Nader’s “Unsafe at any Speed,” and Adolph Hitler’s category of “useless eaters”: labeled, branded, and gassed. While government agencies persisted in using “consumers,” polls and surveys said we didn’t like the term – because consumers, in every other instance, had the right to return the item, be reimbursed, make exchanges, have customer service and manuals, read repair data and ranked features about their purchase in Consumer Reports.
Both categories of consumers and family members, always in equal number, were placed as tokens on advisory councils, committees, panels, forums, and boards. Family members—disgraced, embarrassed, sometimes blamed, considered tragic and burdened—had transportation, social experience, and clothes to best represent themselves. Consumers without a reliable car if any, Goodwill clothes, shamed, put down, fearful and nervous about speaking for their peers, were vulnerable to over-reacting or being mute, being used by providers, betrayed, and becoming invisible.
A few consumers became the appointed single spokespersons to represent consumers everywhere. A few family members who toted their “loved ones” story around without their permission were in all the photos. It was easier for the organizers and facilitators to ask a consumer whose position on policy was known and could be pleasantly ignored with a smile and the promise “We’ll look into it.”
When managed care became a reality, we were called “beneficiaries” of insurance and “recipients of services,” the latter sounding too passive for the partnership that good treatment requires.
Then when willing and able ex-patients (some still on medications) began to be trained 40-80 hours, to pass exams and be educated even more by their employer, the
peer specialists began to mentor and coach their peers. Those writing up the training requirements and employment advertisements needed words to describe the candidates they were seeking.
Employers seeking peer specialists needed not only to see so many years of demonstrated recovery without hospitalization but also to have candidates with “lived experience” of serious mental illness and/or substance use and abuse. Peer Support Specialists’ capacity for empathy and sharing recovery skills is what makes them effective. “Lived experience” was a personnel language decision.
Consider this--"Wanted: Family members and others, like gadfly D. J. Jaffe, who base their expertise in the mental health field on their lived experience as family members who advocate for their point of view on how their family members should be treated."
Thank you for taking the time to consider my explanation of why “lived experience” is a preferred term when hiring peer specialists. I hope you find this explanation compelling.
Bonnie Schell
September 1, 2014
For reading on why labels and derogatory names are demeaning and create stigma which often leads to discrimination, a good book to read is Media Myths by Otto F. Wahl, PhD.
Tue Sep 02, 2014 at 3:18 PM PT: I have been advised that my use of the word "article" to describe this diary written by Bonnie Schell and posted by me is confusing to those who are used to a different meaning than I intended. My mistake. She has written many articles, but for now, there are just two diaries at this time that deal with HR 3717.