What to say instead of “mental health consumer”

Many people are now getting away from using the term “Mental health consumer” to talk about a person in recovery from a mental health diagnosis.

I learned in my certified peer specialist training that my recovery was not from the illness, it was from the diagnosis. Recovery from the illness only includes eliminating symptoms. Recovery from the diagnosis means rebuilding from the judgements that you and people around you might have made about your limtations and abilities. For me, it was learning that I can dream again, which is my my recovery story is called, “Taking back the dreams.”

I stopped saying mental health consumer a long time ago. I don’t like “consumer” at all. I realized the weakness of the term when my art was reviewed byt eh 60 words per minute art critic, Lori Waxman. This is a performance art form and an art review at the same time. I performed a spoken word poem for her and talked with her for a few minutes and showed her my digital poems collages. This is when I started learning that I am more of a performance artist than a visual artist, because she said hearing the poem is shere she felt the power. She asked me, “What is a mental health consumer?”

My digital poem collage about how former "mental health consumers" are changing services in Kansas

My digital poem collage about how former "mental health consumers" are changing services in Kansas

I had to explain, “Well, everyone buys stuff, so saying mental health consumer only has meaning to other mental health advocates. It’s a compromise term that came from trying to satisfy people on diferent places in the advocacy setting. Since it’s a compromise, no one really likes it.”  Plus, of course, recovery is not a passive purchasing or receiving process. I also never use NAMI’s indicated alternative, “People with mental illness,” because I believe emotional suffering comes from events in our lives, not an “illness” in our brains.

What we can call people instead of mental health consumers:

Instead, I use, “people in recovery,” “People with mental health labels,” “people with a psychiatric diagnosis.” “people receiving services.” “peer”, or “psychiatric survivors.” When I am angry and preaching to the choir, I’ll say, “victims of psychiatric oppression,” “people stuck in the mental health system,” or “psychiatrized people.”  I usually save the last few terms for audiences I don’t have to worry about scaring off.

I recently heard from Eric Harkness, my NAMI Kansas friends, that NAMI is changing their “Consumer Council” to something like a “Peer Council” or “Recovery Council.” I know many people in the recovery movement like to bash NAMI, but if we beleive in our own ability to change and recovery, we have to believe in an agency’s ability to learn as well.  My NAMI Missouri friend Edward Duff said the national consumer council has been hip to getting off meds for a long time, even before the rest of us started being more vocal about it. Edward’s favorite term is “experiencer” or people with lived experience.

Lately I thought maybe we should be called “truama travelers” since 90% of people with diagnoses have lived through trauma?

Or instead of consumer, I mostly like to say, “my friends,” “my brothers and sisters in recovery”, “my fellow advocates”, or “people like me.” “We” might be the powerful word of all in mental health when used by people who do share something. I like to say my years of learning how to recover is better than a professional’s years of learning how I might have been sick.

See this essay by David Oaks: http://corinnawest.com/david-oaks-lets-stop-saying-mental-illness/

Do you like the term “mental health consumer”? Why or why not?

10 comments to What to say instead of “mental health consumer”

  • Brooke Leonard

    Corinna, I really liked your article. Very thought provoking. The term “mental health consumer ” (even though it might have been a better term to “client”, etc.) always made me think of someone who was “shopping” for the best mental health care. Well, that is exactly what I was doing for a long time; trying to find the best care for my “personal” mental health challenges. However, what I discovered from my experiences was that there was not alot of “personal” mental health care happening. I felt that I received “blanket” care where every mental health patient was given the same medications that were expected to work for everyone and every problem. But this was not true. Most of those medications did not work for me; they made me either sick, some made me “crazy” (sorry for using this term but that is how I felt) or even sicker than I already was. I took me a long time to get to the point of finding a mental health professional who could work with me without over-prescribing meds. I have come a very long way in my personal recovery from “mental illness” and I do still take some doses of several meds. I do not know if I will ever be completely med free. But I do know that my mental health is better than it has been in many years. I believe that my recovery has been due to a combination of several aspects; conservative med use, therapy, being able to participate in “normal” functions (like working part-time), creativity and having a support group available when I needed it.

    I applaud your effort in trying to get more peer-to-peer support groups going. It hasn’t been all that long ago when there were no support groups and no education about “mental illnesses”, “mental health” or “recovery”.

    I don’t know what the best “term” to use when referring to other’s experience or recovery from mental health challenges but I believe that the MOST important thing is how each person thinks of him/herself. THAT is the most important thing. If someone thinks that they are flawed, dysfunctional, incapable, crazy, mentally ill, etc., then that is what they will be. I think it will be a very slow process to try to change the way the medical establishment or how mental health providers assess or “label” mental health issues. But the most important thing is to educate the peers about what they can do to improve their mental health situation. Remember that medical mental health care is a relatively “new” aspect of medical care. Somewhat archaic still but not like how people with “psychiatric problems” were treated in the past. We are no longer locked away in dark dungeons, burned at the stake, drugged to oblivion, etc.

    That said….just call me,
    A Survivor

    • My son is a 19 year old with a diagnosis of bipolar after years of many of labels. I have often thought that each diagnosis he has had fit at the time and that he grew into the bipolar. Yes he had problems as a young child but a major mental health diagnosis and way too much medicine as is the case with Rebecca Riley would not have helped him grow into the young adult he is today (goes to community college getting C’s and B’s, works part-time for gas; lunch/dinner when not home).

      I have worked in early intervention for years so I also see the side of families facing unknown diagnosis/why is my child doing this? Families need the help of services like EI and the Rosie D home based behavioral supports before medicines are started with 2 & 3 year olds. Two year olds are very quirky and show a range of behaviors for so many reasons that any doctor could say that in any one moment that a tantruming 2 year is Cybil. This case so sadly illustrates the lack of services and supports for families and failures in our child protection services. Many people were reporting something wrong before Rebecca got sick and then died.

  • Thanks so much for the comment. Always good to hear from you. We did actually survey quite a few people who experienced the mental health system about their primary identities and this is what they said: https://wellnesswordworks.com/mental-health-service-recipients/

    • This comment edited for brevity and clarity:

      Re the journey when do we ever get to arrive at the destination? Is there a destination or several pit stops and new routes? While there is some nice scenery once in awhile- we all want to get out of the car/plane at some point and BE THERE.

      As a parent whose adult son now deceased (medically fragile/neuro muscular) who never got accessed for his mental health issues (his anxiety was well hidden a family trait: grandmother and me, his mom) YOUR issues are on target I agree with the previous comment re daily journal which aids all is assessing a clearer picture and certainly the better we get at this, the treatment can be more defined.On a related note as treatments get tweaked often the meds to do. So who is helping families and youth to track medication compliance? As family’s teach and monitor their child’s medication dispensing ability (love the little daily drug boxes) and later the youth increasingly does this independently how do we really know if the meds are working if there is no tracking or end of the month assessment? How successful were we? If not, what strategy can be develop to improve compliance.

      (For my husband and I we assess our med compliance together for each other weekly-getting into the habit to make it automatic).As an adult who finally got a Dx 50 years late I am now on this new journey trying to learn take what my son’s life journey taught me And yes agree the family the stories are familiar for me it’s what I have heard the past 37 years .hmmm Medical progress has been made .What I suspect needs more of our attention is individual capacity and decision making using assets not deficits..coaching not demeaning I have worked on the national level on improving systems and services as a family leader and later as a paid health policy analyst

      Yet why are the outcomes for most of our children and youth the same as they were when I started in 1973? Policy and practice takes time. Families, children and youth need changes and tools now .My new focus professionally is on accurate medical reporting to drive the medical encounter, increase skills and abilities to be involved and knowledgeable in medical decisions, improved medication compliance and maintain handheld medical records and of course increasing skills for children/youth involvement (or expanding a circle of support) along the way.

      Where my focus as an individual who is newly Dx is on balance, increased awareness of daily triggers and more focused reporting with my medical team. I want health and wellness and (like the rest of you) I am not waiting for it I am working forward to it. The knowledge,skills and abilities are lifetime issues learned over time more than can be attained in one great workshop(s). I’m not suggesting to scrap workshops, guides, manuals but there has got to be something that take great ideas to become personal action and increased knowledge? Maybe the ongoing blog that dialogues with authentic voice, has focus and offers strategies, that sense of urgency, is the new medium that contributes to individual change? Sure worth a try.

  • Andrea

    (Edited for lenth)

    When “mental health consumer” was coined was in the mid-1980s, it was based Ralph Nader’s cresade against the automobile industry in the ’60’s. Autos were unsafe, and many people died needlessly. Before Nader’s 1965 book, Unsafe at Any Speed, opened the door for safety changes.

    His book said, metal car dashboards, lack of seat belts, and poorly attached car doors caused millions of avoidable deaths. His book led Congress to pass the Traffic and Motor Vehicle Safety Act of 1966. Seat-belts, air-bags and any safety feature on automobiles can be traced back to the Motor Vehicle Safety Act of 1966 and to Nader’s book.

    After the book made him famous, he formed Public Citizen, a non-profit activist group dedicated to consumer protection. The activists became known as “Nader’s Raiders”. Nader also started the U.S. Public Interest Group (PIRG), an umbrella group of state PIRGs fighting corporations and politicians over issues from prescription drug costs to polluted waterways to the economic lunacy of building tax-funded ballparks for billionaire sports team owners.

    Nader also founded the Center for Study of Responsive Law, Center for Auto Safety, the Disability Rights Center, the Pension Rights Center, the Project for Corporate Responsibility, and the Clean Water Action Project. Without the work of Nader, his followers, and the groups he organized, there would probably be no Safe Drinking Water Act, no Occupational Safety and Health Administration (OSHA), no Environment Protection Agency (EPA), no Consumer Product Safety Administration, and no Freedom of Information Act (FOIA) of 1974.

    MENTAL HEALTH CONSUMER ACTIVISTS, who had lived in mental hospitals for years, were put in 4-point restraints for hours without bathroom breaks or any food or water, forced into a treatment system against our wills to treatment that didn’t work, and made us worse, we started the RECOVERY MOVEMENT. Through our own efforts, we learned to recover, despite ridicule and name-calling from the treatment industry.

    We took on the psychiatric hospitals to end seclusion and restraint. We advocated for peer support services. I am proud to be called a “MENTAL HEALTH CONSUMER” because I know my efforts as a CONSUMER have made the positive changes that we see today. As a CONSUMER, I now know that I don’t have to accept any treatment that I believe is not in my best interest. As a CONSUMER I can insist on medication of my choice if the side effects are problematic to me.

    If I’m only known as a “peer” I’m sort of stuck. Being a CONSUMER gives me the power to be an activist to improve services. As a CONSUMER I don’t have to passively accept services or treatments that I don’t choose. I can demand services and treatments that help me.

    When you are an activist or advocate, you wear your “MENTAL HEALTH CONSUMER” HAT. When you are with others who are experiencing self-help and mutual support together, you’re a PEER. When you go to the hospital, you’re a patient, and when you go to receive traditional services, you are a client or a user of traditional services.

    However, I personally don’t want to throw out the term “MENTAL HEALTH CONSUMER” because it gives me the power to be an ACTIVIST and an ADVOCATE.

    • I think you posted this on Mad IN America and I wanted to ask your permission to post it here but got busy and forget. Thanks so much for finding this page and posting this history that I am too young to know. To my ears, “consumer” just sounds mercantile and capitalistic, so this is also an interesting shift in our society’s view of entrepreneurship. Then of course, many of us who received services in the past no longer do, so what are we called?

  • Having been force-treated many times, I have a negative take on “consuming mental health services”. Why would I want to consume what harms me? The amazing thing is that they would expect me, or my insurance company, to pay for my being imprisoned, tortured, and mistreated against my will.
    I identify myself as a psychiatric survivor. A psychiatric survivor feels he or she has had his or her human rights violated by the mental health system, who has survived psychiatric treatment.
    Psychiatric survivors are to be distinguished from psychiatric casualties, or non-survivors of mental health treatment. Non-survivors of mental health services are cadavers.
    In Europe they use the term service users, and that’s got to be superior to “consumer.”
    I like the call myself an ex-patient. Ex-consumer might work, too, if anybody wants to use that one. I also like to call myself recovered. One thing I will never say is that I’m “in recovery”. My feeling is that “in recovery” is a trap if you can’t get out of it. Recovery is a process with a beginning, a middle, and an end. When recovery doesn’t have an end, we call that “stuck”. Complete recovery from serious mental illness with a recovered, past tense, can and does happen.

  • I was there when we were patients, then clients, then consumers, then c/s/x (consumer/survivor/ex-patients). To me “survivor” was a name you had to earn. I started calling myself one when I thought I’d earned the right.

    I also remember when Negroes became blacks, and blacks became African American.

    For each group, each change was to something they found more powerful and less stigmatizing.

    Consumers choose a store and decide what to buy. They are not consulting experts, getting cured, or learning how to live from wiser, more powerful people. Trouble is, consumers in the public sector don’t choose what services they get, from whom, or where, and sometimes treatment is forced or imposed. That never happens to any other consumer of anything else.

    In Europe, they use the term “users.” That’s no good in America, where “users” are active drug and alcohol addicts.

    The important thing about what oppressed groups and individuals call themselves is that THEY ALONE decide what it is, and that everyone understands what they mean. Often, oppressed people use one term among themselves, and something else with other people. Often, the “inside” term is unacceptable or offensive coming from someone outside the group.

    Women sometimes call one another “girls,” but they won’t accept it from me because they feel belittled and patronized when a man says it.

    I don’t like the term “consumer,” but most elected and appointed government officials have learned it. When I want to educate or persuade them about something, I have limited time, and they have short attention spans. I often use the word they know, rather than distract from my message with a lesson in the finer points of language.

  • Lowry Sevens

    To me, consumer means to take in and digest. I love Ralph Nader and the consumer movement, but the word is used more frequently in the terms “consumer goods” and “consumer debt.” These are things that go along with a whole “corporatization” of our lives. If you aren’t buying a bunch of things you don’t need with money you don’t have, YOU are the guilty person when the economy is not doing well. And that superficiality has become all-important – our lives are based on NOTHING unless we wake up and connect with each other and nature. Let’s get real – if we consume anything, whether it be food or medicine, let’s make sure it is healthy and made by OURSELVES as much as possible – not some company selling us a bill of goods from the Chemical Industrial Complex, whether that be Big Ag or Big Pharma (same companies).

  • Laura

    I can’t stand this term. As a person having forced psychiatric treatment, it implies I have a choice in the matter, and is highly offensive.