Mad Activists: The Language We Use Reflects Our Desire for Change

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The language we use to describe our personal life experiences, challenges, and identities can reflect not only our perspective and worldview, but also indicate what change we are hoping for, if any. Some people describe their experiences using diagnostic terminology (such as “bipolar”), some prefer “consumer” or “service user”, or perhaps “disabled”, “psychiatric survivor”, “mad”, or “neurodiverse/divergent”. Despite these differences, people are often grouped together and presumed to be in a wider social change movement with a collective identity. There still remains no real consensus around the terminology of what we call ourselves or what others call us.

I believe there is not one movement but many, and the language people use reflects how accepting they are of the psychiatric explanation of their experiences. Perhaps, by not acknowledging this, it is impacting the potential for radical social change. The language we might use to describe ourselves or our experiences can, of course, change as we meet others with similar or different experiences. We might shift our language as we start to reframe our experiences as our worldview changes. This also means our connection to different social movements might change too.

Colorful drawing of protesters

Many people adopt psychiatric or diagnostic language and frame their experiences as being external to their identity. This is the perspective of having a “mental illness”, a problem they would like to fix or recover from, usually under the direction of clinicians. People who see themselves as having mental health conditions, disorders, disabilities, illnesses, and diseases view their experiences are something external to them so it can be treated and even cured. This narrative is key to the success of the psychiatric and pharmaceutical industries, which benefit greatly by being the conduit to that treatment.

Many hold this perspective because they are in desperate pain and need access to care, support, and treatment. The changes people with this view are seeking might actually be more psychiatry—more hospitals, more beds, more clinicians, and easier to access medication/mental health services. The problem is that this perspective barely recognises the significance of trauma, systematic inequalities, spirituality, intergenerational, socio-economic, political, environmental, or relational factors.

For some people, using terminology such as “service user” or “consumer” is preferable. This places their identity on having accessed or used mental health services. However, according to Judi Chamberlin, the term “consumer” was introduced by providers as a way of including people using services rather than being a term people chose for themselves. The adoption of the term in this context ignores the fact that consumers of services should have choices and rights.

Applying the term “consumer” to people who have been marginalised and oppressed whitewashes the reality of systemic abuse that takes place through coercion, restraint, and seclusion inflicted on people as a means of enforcing conformity. Someone who is involuntarily hospitalized and treated against their will is hardly a “consumer”.

When considering the social change that “consumers” or “service users” are looking for, they are often seeking their seat at the psychiatric table. Sometimes they might take up paid or voluntary roles as consultants or advisors within the psychiatric/mental health system. The change they want to see is involvement and representation within the current system and within the existing psychiatric paradigm often called “mental health”.

For many people, using disability language feels more relevant. This perspective is built around the social model of disability but still essentially frames their experiences around impairment. People identifying as having a disability are more likely to be seeking accommodations. They might argue that the current societal norms and discriminatory structures are creating barriers which are disabling for them. The social change they are seeking is the removal of these barriers so they can live a more equitable and fulfilling life, such as having access to suitable housing or fair treatment by employers.

Some activists believe the mental health service user and the disabled people’s movements should join forces. From a social movement perspective, this feels like it would be a more natural allyship as their shared goals might include increased/better access to psychiatric services, more and easier to access supports, mental health awareness, less discrimination, and perhaps even recognition of a social model of disability and equality.

People who believe their treatment was more harmful than helpful may prefer the term “psychiatric survivor”, which shifts the focus away from individualism and towards a human rights approach. This language brings a deliberate call to action and activism. As Chamberlin explained, the term “survivor” has connotations of strength as people have lived through an ordeal. The psychiatric user/survivor movement evolved out of the larger mental patient’s liberation movement and emphasized its strong opposition to human rights violations.  Social change for the survivor movement focuses on a complete rejection of the dominant medical model.

People in severe emotional distress are often pathologized, diagnosed, and institutionalised rather than responded to with care, understanding, and compassion. The psychiatric user/survivor movement challenges the systemic injustices with psychiatry and calls for more humane alternatives to be made available.

The term “mad” has been reclaimed intentionally as a deliberate interruption or sabotage of the dominant psychiatric perspective. It challenges the entire basis of the medical framework which is that people have illnesses or disorders. Prior to the last 200 years in history, “madness” was a widely accepted term in society and was not a medical term. The reclamation of “mad” is a provocation to psychiatry as it is a complete rejection of their diagnostic expertise and power.

Mad activists seek acceptance within society of who they are, rather than being seen as a problem to be fixed or seeking inclusion within a broken system. Experiencing distress, however confusing that might be to others, is a human experience and should be responded to with compassion, love, curiosity, and empathy, not fear and stigmatization. Instead of jumping to conclusions that there is something wrong with the person, this could be viewed as a way of communicating pain, processing trauma, or being at a life crossroads where significant change in needed. This doesn’t mean no supports are needed; however, mad activists ask that human experiences are not pathologized or psychiatrized. Mutual aid and peer support might be ways of providing more meaningful supports than psychiatry in times of distress or overwhelm.

In 2010, researchers published a report about what “service users” thought about the way mental health and madness should be treated in society. The existing social model of disability, whilst preferable to the medical model, remains framed around the concept of “impairment”. An understanding of madness based on socio-political factors could be a helpful progression. This might include social, political, and environmental perspectives.

People who identify as mad want equity and to completely revolutionise how madness is viewed by society as well as advocating for human rights, ending coercive/abusive treatment and the pathologizing of human emotion.

For decades, we have been arbitrarily grouping people together with a collective identity as a social movement even though their perspectives are vastly different. For a social movement to be effective, there needs to be consideration of the costs and benefits that allyship and partnership with others might bring. The assumption of being one collective, cohesive movement is potentially slowing down social change, as the changes people seek are often in opposition.

The historic allyship between “mad” activists and the “mental illness” and “service user” movements might have come at a cost to establishing more effective partnerships with other radical movements who have a shared focus on global systemic change, equity, and a desire for social justice.  A more focused and autonomous mad movement could gain more traction by working in partnership with other marginalised and radical social movements.

There are other movements also seeking liberation and acceptance, and radical systemic and societal movements could work more collaboratively. Mad scholars could adopt radical compassion and empathy towards other oppressed groups so new partnerships might form. This would enable us to work together to bring about significant systemic change even when our experiences of oppression are significantly different.

The more conservative mental health movements are advocating for minor changes for individuals or groups within the existing psychiatric paradigm. There is a wide acceptance of psychiatry and its damaging system of categorization and pathologizing, despite this leading to the disproportionate and repeated torture and abuse of people of colour, indigenous peoples, women, the working class, and people in the LGBTQ community.

I recall the words of the Mad People of Colour manifesto that this is not about the solidification of a collective mad identity but instead it is about solidarity with people who also have complex, ongoing experiences of legislative, institutional, and carceral oppression. There is a need for partnership with these movements and critical disciplines—for us to build on solidarity and radical compassion.

For the mad movement to gain traction to achieve radical, global, systemic change it is time to consider which other movements we want to work in partnership with. Will that be with other movements with shared goals and visions for complete systemic change? Or with those asking for “a less confining prison” (as Judi Chamberlin called it in 1978) or inclusion in an archaic and societally damaging system?

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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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Lisa Archibald
Lisa Archibald is a proud Scot and has been privileged to be a part of peer communities internationally for 20 years. Lisa was a Winston Churchill fellow in 2013 in the Communities that Work category, a Yale Let(s) LEAD fellow in 2019 and is now currently an MSc in Mad Studies student at QMU in Edinburgh. Lisa is a solo adult raising 2 small global citizens and has a jet setting kiwi cat called Shadow. Lisa works for Intentional Peer Support as Training Coordinator and is working towards becoming a more radical activist.

19 COMMENTS

  1. Hi Lisa Archibald. Good to read you.

    You see…I think that the term activism denotes seriousness, passion, opposition etc…

    I do not prescribe to psychiatric labelling myself because, unlike many in that field, I have what’s called a working brain. My experiences, my seasoning as a man and a human living his life on this planet, tell me that I am a unique special individual. As the Vulcan IDIC out of Star Trek states ‘Infinite diversity in infinite combinations and how our differences combine to create meaning and beauty’.

    We are all unique in our own special way and, IMO, those who subscribe to labelling souls are straight jacketing themselves. The issues arise when they are given the power to straight jacket others…

    I am neither a consumer. I do not want to consume psychiatric nonsense. I don’t need it. I’m a man. All I need is agency. I’m only a consumer of what I desire or need. When it come to psychiatry they are trying to enslave me to kowtow to their mediocre pedantic drivel. I’ll have no truck with that.

    I am nor a service user either. That would imply they offer a service to me. They do not. They are state sponsored stalkers continually shoehorning themselves into my life when they are not wanted. The very definition of stalking ( which is illegal in other contexts as you know ).

    I am not disabled either, besides the side effects of the drugs they force me to take. If I have a hangover I wouldn’t even take an Asperin. I’d live with it. Yet these circus clowns force meds into me.

    I am not a psychiatric survivor either. That would indicate that these ( mostly ) sheltered, naive, arrogant nerds who masquerade as ‘doctors’ in some way have the power to traumatise me. They don’t. I refuse to be traumatised by those who I would kick sand in their face on a beach or take their lunch money off of them in school ( I’ve never been a bully but you get my point. I genuinely perceive psychiatrists as being gimps ).

    I’m also not mad. I’ve simply had experiences beyond most of the ‘doctors’ experiences that they’ve had of a spoilt childhood and school, sheltered college life and protected ‘clinical’ ( lol ) settings so they can’t comprehend me so seek to label me for their own satisfaction.

    I’m not neurodiverse/divergent either. I’m simply not engaged in mediocre pedantry like the ‘doctors’ are. If they can’t comprehend that its not my job to educate them. Let them go out into this lonely world and find out for themselves. Let them act like adults IMO.

    The simple truth is, and I think its the best weapon in any ‘patients’ ( lol ) arsenal is to laugh at them. They haven’t a clue. Don’t take them seriously. I can see their delusions for what they are.

    The best line of attack as far as I’m concerned is to highlight their stupidity for others, particularly the layman.

    The problem is, in every revolution many people respect opposition, yet when your deemed ‘mad’ nobody takes you seriously. You lose agency as a person in my experience.

    Therefore the best way to combat psychiatry is to highlight the delusion and stupidity of their ‘science’ ( lol ) in a way Richard Pryor would be proud of.

    Insousience to mind control is the best defense IMO. Its also the best offense.

    Its not hard to make half wits out of them. They’ve laid the groundwork to do it to themselves after all.

    Remember…when your smiling the whole world smiles with you.

    This ‘activism’ is a different fight. ‘Mad’ people don’t need to be taken seriously. That’s the gift psychiatry has given the world.

    What would happen if those who deemed others ‘mad’ were exposed as being circus clowns by their ‘patients’?

    Weapon in hand so. I’ve changed a few minds with this approach. The madman shows the madness of the so called sane ‘experts’.

    Its not hard and its the greatest weapon in all of our arsenal IMO.

    Thank you.

    • Greetings to all.

      Jack — I like your rundown of the labels you don’t ascribe to.

      Terminology is always a problem. Most of those who have endured psychiatry tend to call themselves “survivors” but I understand your discomfort with the term. It tends to connote the polar opposite of “victim,” which I think is a disempowering way to identify.

      Worst of all these however is “mad,” which far too many people romanticize and apply to themselves in a way that implies they are “special,” however if one person is capable of “madness” we all are. And what would “mad activism” consist of other than the effort to eradicate the ultimate source of all these labels, i.e. psychiatry itself?

      Anyway, a thought-provoking response worthy of praise.

  2. This is an interestingly disablist article and I thank Lisa Archibald for writing it, if only because it illuminates the deep disablist prejudices that run deep through many contemporary so-called “mad” activists.

    There is a disturbing subtext to the rejection of disability, which is basically a refusal to be aligned with those comrades with physical disabilities. And yet these are the only people on this Earth that know and live and suffer under the Othering that we do too.

    “O, I’m not like that!” certain sections speak of one another, “I’m not one of them.”

    Irony being that all mad activists are able to be mad activists because of the triumphs of disability activists, who have helped bring about huge moves in human rights and social and economic concessions.

    It is the refusal of disability that holds some back.

    Also one major flaw of Judi Chamberlin and other activists is that they run deep with injustices made against them, but fall silent about the injustices against others that originate from their own manors.

    Why can’t we be more honest about that?

  3. Whoa that is a huge leap. I work with mad activists and in pretty sure they dont owe their ability to be activists because of the “triumph of disability activists” What does that mean anyway? Could you please give some examples of these triumphs? Last time I checked–thousands of people with psychiatric labels still get forcibly shocked, drugged, put in solitary confinement, and institutionalized. When one calls the local PAIMI or Disability Rights organization or CIL from a back ward–and one pleas for legal counsel or an advocate to resist or overturn a court ordered ‘treatment ‘ that one finds harmful or degrading they will rarely take up one’s case.

    • Hi madmom.

      I agree I also don’t see the triumphs of anyone opposed to psychiatry, its practises or their diagnoses. I’d like them pointed out too.

      In actuality what I see is that the more vocal those opposed to psychiatric practises are the more they are dismissed as being Scientologists, ignorant, in denial of their madness which the psychiatrists always point out is a sign of madness itself and so on.

      Sure I even posted about psychiatry on a local to my country forum in the health section. It was moved to another obscure section of that forum. When I asked why, as I felt it was a very important discussion that needed highlighting I was told it contained misinformation and such and was the typical Anti Psychiatry nonsense. I put in an appeal which the admins are obliged to respond to by their own guidelines. They didn’t. I was simply dismissed as being some kind of Scientologist conspiracy theorist nutter.

      This is my point. With the average person I’ve found that once they realise your opposed to or have had experience of psychiatric ‘treatment’ your dismissed as being a tin foil hat at best and an absolute lunatic at worst.

      That’s why I said earlier that new approaches are needed. Comedy aimed at psychiatrists is a far better approach to me. Get the world to laugh at them and with you instead of laughing up their sleeves at you for being a tin foil hat…

      Its the only approach that’s ever worked for me anyway.

    • I don’t know the equivalent laws in the USA and elsewhere, but no doubt they have them. And where they don’t. human rights and disability activists are pushing hard for them.

      I’ve mentioned already the CRPD. In the UK we also have the Equality Act 2010. That has advanced disability rights significantly too.

      Disablism is rife in all areas of life, including within disability groups. Disablist policies and practices and incidents and individuals must be challenged for progress to be made.

  4. Lisa, I love your article. It is spot on, in my opinion.

    I do not know if you ever read my previous comments, and a quite pertinent recent one, which seems to be taking a fortnight to moderate, but I have been sensing this predicament also.

    I do not call myself impaired or disabled. I just call myself ILL.

    The ILL have a right to be ILL!

    I myself am really badly ILL. I care not what some other person says I should or should not call my illness, be they a friend or psychiatrist. Any other person could call anyone’s illness demonic possesson, or counter espionage, or syphilus, or quackery, or trickery, or fakery, or any word in the dictionary. Right now the whole world are saying women cannot call themselves women, and the whole world are saying lesbians cant call themselves lesbians, and gay men cannot call themselves gay men, and trans folk cannot call themselves what they prefer. It is mass bullying to tell another human being what they can and cannot call themselves. The only way out if it is for everyone on the planet to mind their business and stop prying into the words and freely chosen identities of anyone who is not their own solitary self.

    At some point you just have to cease listening to anything or anyone who is not you and does not have your unique illness, or condition, or politics or philosophy or sex or gender or way of being. But you are right. It means there can be no unifying solidarity. Who knows, maybe if there had been more flexibility in accepting differences of this kind then maybe the movement would have had more people join it and made more of a change, much faster.

    A group may stay small in order to weed out the gentle or the passive, since fierce activism often calls for a kind of radical puritanism about a particular ideology. The passive may be deemed too slow to effect change.

    But so does the smallness of a group.

    I will say no more for now. My words are unwelcome.

    Its funny sad but I was so fervent about belonging to this movement that I went out of my way to get tests done to see what years of dreadful medication has done to my brain. The results of multiple scans are back and show a lot of damage. I spent a great many years with my schizophrenia before I ever took psychiatric meds. I was schizophrenic before the pills. I am almost certainly doubly schizophrenic now, as can be seen by my new brain. It has horrible lumps in it. The lumps are probably called Abiliform and Rispercollosum and Quetiapistantia. I was ILL before them. Full of beaming solidarity I wanted to flag wave my results amongst my fellow psychiatric survivors at a venue I attend but I have to call my illness something else first…apparently.

    End of discussion.

    • Hi DW.

      Good the hear from you.

      Personally I don’t care what you call your subjective lived experience. My sister calls herself Bipolar and wears it as a badge of pride. More power to her. I’m not anti mental health issues myself.

      But I am anti people telling me what’s going on in and what’s wrong with my MIND without PROOF. Extraordinary claims require extraordinary proof and psychiatry doesn’t have it. Therefore they are in no position to force their subjective opinion on me when its neither wanted nor needed.

      That’s what I take issue with.

      If whatever you feel is wrong with you works for you that’s great. It gives you a foundation to deal with or live with it…but personally I won’t let a ridiculously named ‘doctor’ ( verrry small caps ) act like a Third World dictator with my life. They’ve no right in a free Republic.

      • Jack,
        Been really rushed but I just want to thank you Jack for sharing your views with gentleness. I appreciate it. And I fully agree. If you want someone to approach your mind with the respect and consideration you prefer then you must speak up about it for sure. I want what you want for your mind. It is your mind.

        I suppose I could playfully do a silly ping pong match with the exciting word “proof”. If I am in a strange railway train compartment and someone across the aisle looks sinister I think I would probably instantly want to see into her mind or his mind and come up with my own satisfying proof that the person was just on some heavy drug like crack. I think I always will surveil strangers for proof of equillibrium. I even called my own uncle nutty without knowing realistically what was going on in his mind. I had no proof. He might have been selecting my birthday present. I think everyone gets judgemental. Everyone thinks they have uncovered the proof that their spouse never loved them or their boss is deliberately sabotaging them. Humans are hard wired to police their environments for sabre toothed tigers by policing the minds of strangers and interlopers and sadly for some even their very own children. I am all for people backing off from being judges of other peoples minds….your mind…my mind. Of course some people come begging to be judged, because they are frightened of their mind and want it propnounced sane so they can rest easy about what might happen next. They want proof their mind is all gonna be okay. They may turn to doctors to reassure them. The reassurance of being policed by a friendly parent figure expert. But humans have been doing that for over 70, 000 years, through asking Shamans and witch doctors to peek into their mind and prove there is only little ol them in there and nobody else.

        I think the main issue is brutality. Are the meraphorical mind-police, who are anyone and everyone, in ones life a source of comfort or distress? Everyone’s mind is different. Everyone will probably feel differently about all of these things. I think a good thing highlighted in the article is a need to accept such differences of opinion without sneering at anyone elses unique experience, or mind. You have not sneered at me and so I chose to reply. You surprised me with your generosity.

        But I am not going to chat further since I have a lot to do and I am aware it does not really benefit me to get lured by articles to make comments that probably will not meet with general approval.

  5. I like antipsychiatry activism myself. Mad activism is great so long as you don’t get locked up for your madness. (Getting locked up for your activism, on the other hand, sort of comes with the territory.) Antipsychiatry is about not locking up people who are different, and yet non-criminally so. Psychiatry is about making pseudo-criminals out of people who are different, and stripping them of their human rights.

    Consume poppycock at your own peril. Ditto with regard to utilizing disservices. Psychiatric services (cough, cough), mostly imprisonment and drug use, can and does kill.

  6. Hello, Lisa…
    I grew up on the far right, conservative spectrum of things: politically and religiously. But 14 years ago, when my wife’s childhood trauma and extreme dissociation crashed into our 20-year marriage…I was forced to re-evaluate everything…and that also caused a shift in my perspective toward the center. I had to learn to appreciate things from both sides…but then our culture wars here in the States have escalated during the same time in which I was learning to see positives in both perspectives…

    Now, when my wife’s trauma and dissociation crashed into our relationship, we were told it was d.i.d.(traditional perspective), but as we were finishing up our son’s senior year of homeschooling him…(and he’s now finishing his doctorate from an elite school in the Boston area), and because we were both from the Right, and in this country/culture that means you don’t expect the government to do everything for you if you can do it yourself…and so I guess we just started ‘home-healing’ her trauma and dissociation. Yes, it was overwhelming. Yes it was a trial by fire in the worst way. But, I’d already lived with my wife for 20 years. I knew she wasn’t ‘crazy’ and I only briefly thought she might be ‘dangerous’ thanks to our cultural caricatures…but I quickly got over that as I’d slept in bed beside her for 20 years and she had yet to hurt me, lol…And there were lots of other factors that went into how I treated her…but in the end I just continued to see her like myself (as I had for our first 20 years together) other than I now understood she was more traumatized and dissociated than I was…in fact, as we walked OUR healing journey together…I learned a lot about myself…and I had to ‘grow up’ so I could be a better healing companion for her…and I had to do my own healing because my triggers were getting triggered by her issues and vise versa…and I learned a lot about mental health issues along the way, including my time on this website even though we are outsiders to the experience of most on this website, having never been touched by psychiatry and its drugs and the loss of agency and the dehumanization so many here were subjected to..

    (I’m almost there on this ‘meandering’ comment)…and so, all this to say…I understand that the Left in our country wants to dissect everyone into little groups for some reason while the Right tends to (very) imperfectly view us all the same…which is part of the reason for the BLM movement(which I mostly support) on the Left and the Right’s pushback that ‘All Lives Matter”…(I’m almost there)…

    But I guess I believe why my wife and I have made it as far as we have…even though d.i.d. is considered one of the worst things someone can have according to the DSM…is because I fundamentally saw her as no different than myself. I don’t “other” her in any way, even though her trauma and dissociation (or the 7 other ‘alters’ who have joined the relationship) cause both of us a lot of emotional heartache and struggles that we wouldn’t otherwise have…

    And so, I’d like to suggest, that until everyone in this entire movement stops ‘othering’ everyone including the rest of us on the ‘outside’ in any way and looks not for ‘allies’ as the Left likes to call people like me, but for those like myself who see you and me as absolutely, fundamentally the same, this movement for radical change concerning mental health/trauma and struggles is going to continue to falter. My wife and I aren’t ‘allies’: this fight is every bit as much mine as hers. This isn’t “her” healing journey. It’s ours!!! If I didn’t see it as ‘ours’ but hers, the pain and heartache we both suffer from her trauma and dissociation would have probably pushed me to look for an easier path and less difficult relationship as we face all kinds of things most marriages don’t and are still struggling today, together, for her full healing.

    Don’t know if this makes sense because I know I left a lot out and made logical leaps that I didn’t have space to better define….there’s just so much more I could say, but this is already a longer reply than most are willing to wade thru.
    Sincerely,
    Sam

  7. Sometimes, actually almost all the time the labels we use to describe ourselves and the labels others use to describe us can be extremely important. I think as in the various “labels” listed in this article; “mad” “psychiatric survivor” “disabled” “service user” “consumer” can help how you view yourself and also in which group you feel most comfortable with in dealing with your particular situation. Another term I have heard used is “psychiatric victim.” In my personal opinion, some labels seem more derogotory than others and may cause more hurt and pain to the person. The label, “disabled” can be more of a “legal term” and can be necessary and useful in getting certain “benefits, accomodations, etc.” that one may need for work, education, housing, food, etc. In many ways, we think we need “labels” to describe ourselves and others, too. We look far and wide for a “label that fits” to describe us. But, I think, in the end, we should seek to avoid labeling ourselves and others, unless it is absolutely necessary. I think the very best thing we can do is avoid all the labels; because, a “label” is really another form of diagnosis. Therefore, just another way to validate that we are defective, just a portion of a person because we don’t fit some make-believe super-person mold. I honestly our freedom lies in not labeling ourselves. After all, we are not a pack of frozen peas at the local grocery store. We are breathing, thinking, loving, contributing human beings. Thank you.

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