Mental Health Activists Hold Diverse and Varied Perspectives on Psychiatry

A survey of US and UK mental health activists and advocates finds a spectrum of views, from pro- to anti-psychiatry.

14
1428

An article published in the journal Psychiatric Services looks at the variety of perspectives in the world of mental health activists and advocates (MHAAs).

The authors discovered six classes of people out of the 547 surveyed, all of whom had personal experience with the psychiatric system and self-identified as either advocates or activists. These classes ranged from being fairly conservative to being extremely critical of psychiatric services, with several classes in-between representing a more moderate subset of individuals on questions such as involuntary hospitalization, drug use, ECT, and more.

The research was conducted by Awais Aftab, Shira Collings, and Nev Jones. They write:

“Mental health activists and advocates (MHAAs) with personal experience of using mental health services have played a vital role in the historical evolution of psychiatric care, and they have been at the forefront of reform. MHAAs have also served as connectors among clinicians, patients and service users, legislators, and the general public.
The attitudes of patients and service users, the general public, and clinicians have been the subject of numerous studies; however, there is a glaring lack of similar research characterizing the attitudes of individuals who self-identify as activists and who are actively engaged in advocacy efforts.”

The field of anti-psychiatry, efforts in mad activism, service user advocacy, and other related initiatives have received increased attention in recent years, with even the New York Times publishing an article on hearing voices and the Guardian publishing on mad studies.

Through websites like this one, readers can engage with numerous different perspectives which challenge the mainstream psychiatric and psychological models for etiology, diagnosis, treatment, and more.

Most research has focused on “the attitudes of patients and service users, the general public, and clinicians” rather than what this paper calls mental health activists and advocates (MHAAs). The authors sought to remedy that lack of research by surveying the perspectives of these activists and advocates. Ultimately, they want to interrogate the notion of a binary, “black and white,” pro-psychiatry or anti-psychiatry set of movements, representing the diversity of perspectives among advocates and activists.

An initial survey was developed by a “service user–led research team.” This survey included existing materials, such as NAMI’s 2017 policy priority statement and the National Coalition on Mental Health Recovery’s 2017 statement. Additionally, items on the survey were included based on the service users’ experience with/knowledge of the field. An effort was made to include both critical perspectives and more mainstream ones. Finally, the survey was refined through a focus group of activists with lived experience.

Study participants were limited to individuals who 1) had personal experience with “mental difference or psychiatric disability” and who 2) “self-identified as either advocates or activists.” Two flyers were developed, one that targeted more “conservative” reformist groups and one that targeted more critical groups and organizations. Different language was used for each, such as “mental health advocacy” for the former and things like “neurodiversity, mad, user” for the latter.

Four “grouping variables” were used as central to the statistical analysis:

  • “Greater access to assisted outpatient treatment [AOT] and community treatment orders [CTOs] is needed for individuals diagnosed as having a serious mental illness and a history of violent assaults.”
  • “All psychiatric diagnoses are problematic and need to be challenged.”
  • “Involuntary inpatient commitment needs to be abolished.”
  • “Psychiatric drugs are harmful.”

The authors believed these concerns would target some central polarizations within more moderate and critical divisions of the advocate-activist space.

Five hundred forty-seven individuals completed the survey based on a 7-point Likert scale. 88% of the participants identified as white, 66% as female, and 90% as having a formal psychiatric diagnosis at some point—most often depression. 58% had been hospitalized, 34% involuntarily. 68% of participants were from the United States, while 11% were from the United Kingdom.

Through the statical method of Latent Class Analysis, the authors found a range of perspectives which they grouped into six different classes. Class 1, for example, agreed most strongly with the statement about assisted outpatient treatment and community treatment orders while scoring low on the other issues.

“All but one of the classes endorsed the expansion of AOT and CTOs for individuals with a history of violence. Classes 2 and 4 showed a particularly mixed profile. Class 2 was neutral on the question of greater access to AOT and CTOs; there was disagreement with the rejection of psychiatric diagnoses, agreement with the abolition of involuntary treatment, and neutrality on characterizing psychotropics as harmful. Class 4 favored greater access to AOT and CTOs, against the abolition of involuntary inpatient commitment, and agreed strongly with the rejection of psychiatric diagnoses and, to a lesser extent, with characterizing psychotropics as harmful.”

On the opposite end of the spectrum, class 6 saw little agreement with the first issue but had strong opinions on the other items. The middle classes represented more moderate views than classes 1 and 6. However, all categories agreed with the need for “access to alternatives to traditional mental health, need for accommodations, and persons with lived experience being in positions of leadership.”

Unsurprisingly, differences between personal experience with the psychiatric system and the radical nature of perspectives were noted—historical experiences had a strong relationship with current views. Class 6, for example, had the highest rate of history with Electroconvulsive Therapy (ECT) at 39% and the lowest rate of current psychiatric management at 20%. Class 6 also had the lowest rate of receiving outpatient therapy and counseling at 33%, while class 2 had the highest at 61%. History of involuntary hospitalization varied between the classes but was highest in classes 2, 5, and 6.

The variability between the classes, although you still have strong polarity between classes 1 and 6, for example, suggests less extreme polarization than is sometimes assumed in the media and other social groups:

“Survey responses reveal considerable heterogeneity, suggesting that a binary characterization fails to do justice to the range of views expressed by MHAAs.”

The authors noted several limitations to the study. They suspected an overrepresentation of critical perspectives because those individuals were most likely to respond to the survey. They also had questions about the ability to generalize from these findings, given the possible unique nature of the individuals surveyed in terms of personal history and current perspectives.

The authors conclude:

“Engaging with people with critical perspectives in good faith, however, is foundational to democratic pluralism. Impulses to exclude individuals with certain views a priori reinforce existing power structures and hinder reform.
As our survey suggests, those with views most hostile to mainstream psychiatry are often those with histories of more invasive or involuntary treatment. We can tackle unpleasant dimensions of psychiatric care only if we take perspectives born from such experiences seriously.”

 

****

Aftab, A., Collings, S., & Jones, N. (2022). Beyond binary narratives of mental health advocacy: Latent profiles of mental health activists and advocates with lived experience. Psychiatric Services, 1-7. (Link)

14 COMMENTS

  1. Micah what a lovely article. A peach. I thought I was a lone voice in the wilderness until I glimpsed it en route to my door of forgetting. It is a magical door that wipes my memory of why I was going to look for something. Your article though brought up one tangent I always groan at. The word “activist” is the worst word ever to happen to the globe, according to my opinion. Activists think they must constantly strive to save, save, save something but this narrows their focus on lynching whomever is deemed to be the wrecker who is not saving something. After a decade of hard slog climbing up to a podium to maximize the speech about what they, the activist, wants to save, they become so determined to establish their utopian salvific fix, and go down in the annals of mighty global history, that they do not care one whit about knocking anyone who gets in their way. The activist professes to be caring and full of idealist intentions but really these often turn out to be the sweetners in skullduggery. They would rather perish on their path of activism than give up or loose or quit or fail. These things are so very painful, especially the underlying sense of a life that fails to achieve Nobel glory. Failing makes an activist that ghastly thing nobody with an ego wants to be…obscure. Insignificance is a massive problem for humans just now. That is why a billion pumped up activists are constantly fighting. The fighting looks on the surface to be all about a good cause but the deficit of love, or the lack of going about saving in a loving way is the telltale sign that the activist is moved to anger at the prospect of being obscure and insignificant. A failure.

    But the true activism is all about allowing personal obscurity, insignificance and failure, in order to stop fuelling the bonfires of hatred sparking up all over the world.

    To “not” be saving or dying for a cause IS how humanity will eventually save the world from human rage.

    I was an activist for many years. I now smirk at that word. It encapsulates a bullying know-all attitude of having better opinions than anyone else.

    I am not saying do not cherish and celebrate having wonderfully healing bright opinions. I am saying do not make a war out of opinions because the dying planet does not need more human wars. No opinon, whether activist or not, is worth igniting a nuclear catastrophe over.

    Activism is the next generation of antidepressant but it is not needed any more than antidepressants were. Activism is full of craving for success and triumph and utopia. But this means it is not an “acceptor” of people of “difference”. Love is.

    If your activism is not full of love but rather is full of arguing and sabre rattling and intimidation and threats and righteous destructiveness it is a sign of IMBALANCE. What the world does not need is more imbalanced humans getting on their high horse. Animals do not do activism. They chill out and graze a prairie and humans flock to be photographing animals, such ambassadors of gentleness and peace.

    I’m away for a coffee.

    • https://youtu.be/Z9SD2TgiZTU

      I watched this with trepidation today. Why? Because a backlash against the woke ideology is building. Whilst I do not like much in the rough and tumble going on in woke arenas I do not like much now starting to come out of the opposition. To me BALANCE means valuing difference whilst not letting any one difference be dominant. I see IMBALANCE in some woke presentations and I see IMBALANCE in more conservative presentations. Both seem to have one half of the balance the other needs.

      I could not watch the entire video because it seemed JP was hissing and snarling at the viewers. His own activism seems rather devoid of humour and love. It is like watching a kindergarten row. How dare anyone “row” like that with free adult human beings. Much of what JP uses is overthinking and rationalist unemotional data. Why? Why not just not like whomever he does not like and leave it at that. But no. The “others” HAVE TO change. They have to analyse themselves rigid and change into moral upright citizens with no inner child aspect whatsoever. Grim. Some religions chastise the emotional inner child in the human. But that child is close to the animal way of being. An intuitive common sense way of being BALANCED that does not need to read a library to get there.

      I fear that JP does not realize that he is being lured into supplying “an answer” to human misery. That is the soonest way to cause yet more human misery as people get their “rows” and factions multiply and each “side” pontificates like master psychotherapists over each other. If JP was talking about surgery he would not be telling people how to be surgically aware. A surgeon takes a decade to learn that skill and keeps private how it is done. But psychotherapy, with its analytical cutting remarks is sold to any you tube viewer who will not spend a decade learning how to be skillful at “rowing”. What JP is unwittingly doing is putting incisive tools of logic in the shaky dumb hands of passing idiots who have a hatred of their infantile next door neighbour. This is not going well. But I knew so. I see the future. It looks nightmarish but that bit won’t last long. A good future is on the far horizon. Just gotta bide our time and be patient and not devour the breaking news. Just chill out and imagine it is all a mirage.

      The Hoover Dam will topple and when it does you will know that what I say has some sparkles of intuitive animal wisdom.

      Take care everyone, take care.

      (I do like JP rather alot. Just I think he is, like millions are, getting swept up into ye old activist….

      “Fix-it-fever”.

      If you are fixing someone you are changing them and not accepting them. Fixing is not love.

      So long as a person is not behaving with abuse or bullying or cruelty then there is no need to keep changing people. Most people just want to be more like themselves not less.

      Toodloo. Going now. Shalnt be back. Things to do. Embroidery.

    • Dear diaphanous,
      I resonate with you, and I appreciate open conversations. Wish I could drink my tea near you and your coffee. Most of us are learning as we seep, step, pause and push. Urgency and powerlessness fuel wars and systemic dominance.

  2. “Know the enemy and know yourself in a hundred battles you will never be in peril”

    This seems to be nothing more than a means to identify anyone who may be a threat to the existing power structure.

    Doesn’t Doctor Aftab have a ‘history’ here at MiA? Wasn’t there a ‘problem’ with Dr Hickeys critique of some of his work? Or has that been ‘removed for moderation’? If my memory serves me correctly you have to go to Doc Hickeys website to access the ‘offending’ article.

    “Journalism is publishing something someone else doesn’t want published. Everything else is Public Relations” George Orwell.

  3. Aftab was an author huh?

    Anyway, it seems there is never the kind of diligent effort into these things that goes into what professional groups like Pew or Gallup put out. Were there different versions of the questions, in different orders and how does that affect responses? Did people understand what AOTs even are, what they entail, or who advocates for them or anything else? The very important qualifier “violent assault” is left without question – AOT laws, like Kevin’s law in Michigan or others, don’t make that distinction. Rather, they are intentionally architected to include vague “need for treatment” criteria, no violence required. Nor is “serious mental illness” defined anywhere. Would providing specificity or varying the inclusion of qualifiers that don’t resemble reality change the responses? I wonder…

    • Love the name George lol

      I’d post the link to Dr Hickeys article, but given that it was removed by the editors here, I assume i’d be in breach of posting policy.

      In one State here, they made the claim in Parliament that they needed the AOTs to deal with approximately 80 people who were ‘falling through the cracks’. And then in no time there were 3000 ‘patients’ being ‘treated’ in the community………………. a slight miscalculation. Especially when the threat of beating people over the head with the big stick in their own homes was enabled.

      Violent assault was looking into the eyes of the person ‘verballing’ the statements. Consider the comment written about my “Potential for violence, but no clear intent or actual history”. Documenting his own paranoid delusions is MY ‘illness’?

      Still it is a fact that if our Police are writing accurate reports and statements, they are sent for creative writing classes to be taught how to ‘verbal’ statements and keep them vague for wriggle room when perjuring themselves in our courts. Why would mental health services who are notoriously worse, be any different? And the 12 years of prison done by some of the victims of police ‘verballing’ seems insignificant when you consider the response of these people to complaints about their criminal and corrupt conduct…. that is “we’ll fucking destroy you”. And with drugs and electricity at hand, and zero accountability, they really mean it. It really seems to suggest that the State is not serious about the Charter of Health Care Rights huh?

      Our MHA used to define Mental Illness (or technically what they weren’t allowed to write down as being their reasons for forced druggings and incarcerations. ie your religious beliefs should be avoided on the paperwork, but were seen as being perfectly fine reasons for ‘taking you in for questioning’). The exclusion of drug addiction removed in the last writing, moving the problem of drug addicts from police to mental health for forced treatments. Many ways to extract wealth from the Medicare system.

LEAVE A REPLY