Will Hall was recently interviewed about Mad Pride in Newsweek, see http://www.newsweek.com/id/195694
In response to this article, a mental health worker I know questioned how people could say that madness is just a “difference” and not an illness, and yet also claim that people who are mad deserve disability payments. In response, I wrote the following, which attempts to sort out the connections between mad pride and gay pride, and how both might relate to the topic of “disability.”
I agree that the issue of what is just a difference, that one can realistically be proud of, and what is a disability, is an interesting one.
One may be blind, and be to some extent disabled by that, and yet feel that one’s life has been enriched and not deprived overall as a result of the experience. One might need help from others at various times due to being blind, yet also have unique gifts and perspectives to offer to others as a result of one’s blindness.
Mental differences are even more complex.
Years ago, if a young man came into a psychiatrist’s office, reporting that he could not work because he was distracted by overwhelming anxiety and suicidal thoughts prompted by strong feelings of attraction to other men, his affliction would be considered to be his homosexuality and efforts would be made to turn him straight so he could be happy and not disabled. These efforts would likely have just made things worse. The same young man, coming into a psychiatrist’s office now, would hopefully be told he could learn to accept himself as different than others, that this difference was not itself an illness, and that once he did accept it and learn to live successfully with it he would not be ill at all. The young guy might even be referred to people who will teach him to take pride in his differences, and to find others who will appreciate him just for those differences. (He will still make a lousy husband for your daughter, and to that extent will be disabled, but on the other hand he may make a great boyfriend for your gay nephew, so overall there is no disability.)
These days, if a person comes into a psychiatrist’s office and reports that he or she is distressed due to hearing voices and having various kinds of strange experiences and perspectives, he or she is likely to be told that all of this is due to the person’s mental illness, and the psychiatrist will attempt to change it all as much as possible, to make the person “normal.” Yet, research on the general population shows that many people are living fine out in the world who regularly hear voices and have strange beliefs and experiences. Somehow, they manage all this without a lot of distress or disability. What “mad pride” is about is helping people with strange experiences and perspectives to make the shift from being distressed and disabled by their differences, to learning how to accept and enjoy them, and even see them as having value.
The Icarus Project, in which Will Hall is active, speaks of “negotiating the space between brilliance and madness.” So there is an implication that the person has to learn how to manage his or her “dangerous gifts.” With appropriate management skills, there is no longer disability.
What we really have to learn from the mad pride movement is similar to what we had to learn from gay pride: that it is to a great extent the person’s and society’s ignorance of what to do with differences, and not the differences themselves, that are the problem. People can still be disabled when they haven’t found out how to manage their differences, and so they really do deserve disability at that point, but they can also potentially learn how to navigate out of the disability and perhaps become something amazing. Or at least have an enjoyable life, while still being “different.” This is most likely to happen when both the person and the helpers see the possibility of it happening and have some kind of roadmap of how to get there.
So there’s a beginning of an answer. I know it’s hard for those who see “schizophrenia” as nothing but a “biological illness” to consider some of these possibilities, but I think if we really keep studying all the links between creativity and madness, and listen to people who have been there like Will, we will start to get it.
I’m a 39yr old native New Yorker lesbian living in Alaska. I feel as though I’ve, for the first time in my life, turned and looked into a mirror that actually reflects me inside and out even in the midst of my madness.After reading this article,I am looking at my reflection,breathing,AND smiling all at the same time!(Almost impossible for me!)namaste.
I will march in the gay pride parades – I will march for homosexuals to have their right to marriage. I WILL NOT march in a Mad Pride parade! Are we serious? I’m all about saying that medication does not cure mental disorders but to say I am proud to be a schizophrenic. I don’t deny it – but it is NOT a gift! Getting straight A’s in school, being able to solve complex math problems, being a wonderful writer – those are gifts. How is being a schizophrenic a gift? I hear voices! Do those voices tell me that Jesus is coming? Dear god no! They tell me the FBI is after me, that so and so doesn’t like me, blah blah blah – how is that a gift? Do my friends hear these voices? No!
You can NOT compare the gay pride movement to the mad pride movement! They are NOT one in the same!! You are BORN gay you are NOT born schizophrenic – and I will stand behind that belief! Your movement is wrong! To tell people they should be proud and embrace the voices in their head is fucked up! I did that – I did that for six years and where did it get me? Thank god I have wonderful friends and a wonderful family.
Again I am all about curing schizophrenia without medication but to take it as far as to say that being a schizophrenic is something to be proud of like being gay is something to be proud of – is taking the entire argument too far and is not helping the argument that medication should not be used to cure mental disorders. You are hurting your own fight there. And I will NOT stand behind your movement and I take complete offense to the fact you even compared it to the gay rights movement.
And yes this is coming from someone who not only has been diagnosed with paranoid schizophrenia but someone who also identifies with the gay community.
Certainly most people who get labeled with “schizophrenia” have aspects of the way their mind works that cause trouble and that they would like to change. I don’t think “mad pride” is intended to contradict that. So for example if a person has a voice that call the person an idiot, and the person tends to believe it and feel bad, then they might want to change that somehow – but still might see something good in the fact that one has a brain that was imaginative enough to come up with the voice in the first place. Put to better use, that same imagination, that same mental difference, might truly be something to be proud of.
For many of us, finding something positive, even in the parts of our mind that caused us problems, has been key to our healing. You may want to go about this some other way, but I hope you find a way to find something of value along these lines, that will help you heal as well.
Ron: Cool new look! 🙂
Sarah: Civilization conditions us to believe, that straight A’s in school, being able to solve complex math problems, being a wonderful writer – wait a minute, what exactly does “wonderful” mean here? Hm. It’s in the eye of the beholder, isn’t it? – are a gift, yes. Fine. But does the fact, that this very same civilization dismisses a person’s ability to experience oneness with the universe, and get messages from the unconscious, that actually can make the person more conscious – for instance of the superficial, indeed vain, nature of straight A’s in school, and other false ego-identifications – as “mental illness” mean that no one is allowed to embrace their extreme experiences as a gift?
Me too, I do hear voices, and what they tell me isn’t always pleasant to listen to. But if it hadn’t been for the voices, and all the other experiences I’ve had, that the medical profession fancies to label “schizophrenia”, I wouldn’t be where I am as a person today.
Mad Pride may not be right for everybody. It may not be right for you. But I don’t think you, or anyone else, has the right to determine whether I, or anyone else, may embrace their “madness” as a gift or not.
Super post. Most of my family cope in one way or another with – ahem – difficulties… Some of us are touched more than others, and I’m my no means the worst. The only thing that went wrong for me after many decades of coping was too many kids, too much responsibility in the business I was running, too much strife at home all coming at once. My knack for internalising the old psychosis went up the spout for a week or so. And hence, doctors… (They never noticed me when it all went kaput in my younger days!) Thankfully the system where I live is intelligent enough to learn where the light touch is necessary, and I’m bloody glad for that. Now the slow process is ongoing of learning to cope with this newfound knowledge of what I’m ‘supposedly’ going through. It makes everything more distinct, which is counter-productive. I used to call it inspiration. They’ve taught me to call it psychosis. I’m gradually forcing myself to call it inspiration again.
I am a friend of a gay man who has lived with schizophrenia for many of his 41 years. I am new to this disease and find myself wanting to know more so that I may help my new friend. I know he does not take meds and that he views his diagnosis as a “gift”. I become troubled and confused when our conversations go off in fractured directions. Should I try to convince him to take the meds? Will the world he lives in always be dark? Is there anybody out there who can clue me in?
Hi John, I think the best answer is that it’s all very complex and individual, and no one can tell you for sure what will work out best or what will happen. So I think one of the best things you can do is just be curious with him about what his life is like and what he might want different. He sees some of his experiences, that others might label as an illness, as a gift: what does he see as valuable about them? He loses you in conversations at times – does he notice this and would he be willing to try to help you follow him better? He doesn’t like to take medications: what was his prior experience with them and what might his fears and possible hopes be about them in the future? Is he ever interested in seeing a therapist who might help him hold onto what he values about his unique mental state while becoming more able to connect with other people?
That’s a few clues from my point of view.
The present-day label of “service user” may be preferable to historical terms such as “lunatic” but this still creating a category of people who are in the eyes of society, inferior. If things got so out of hand that you had to seek psychiatric services surely that will be seen as a failure?
We may move to the point where we stop relaying on the medical model and understand the social nature of mental illness, with interventions focused in this area – but still this does not get away from the fact that those who have been classed as mentally ill will very likely feel like they are “deficient” in some sense.
This is why I think the idea of mad pride is important. Pride is certainly possible if people are encouraged to seek out the meaning of extreme experiences rather than view them as symptoms of an illness which prevents them from living a normal life. If you brain is able to create a totally alternative reality in which you are a secret agent working for the royal family, or on a special mission from god then I think this is genuinely something to be proud of.
Obviously extreme thoughts can be extremely distressing, but in my opinion the distress is compounded by a society that does not tolerate much diversion from the norms. Marion made a good point about how the things which we may deem extremely important such as A-Level results are in fact just important in the eyes of our present civilisation. If somebody is “mad” enough to realise that none of this stuff is really that important then again that’s something to be proud of!
My sister was diagnosed with paranoid schizophrenia when she was a child. Later the diagnosis was changed to schizoaffective. For her, life is very difficult and lonely. She has trouble making and retaining friends, finding work, and keeping a job due to her disabilities. Perhaps for those who merely hear voices, schizophrenia is a gift. For those like my sister, it is a disability. It is more than just hearing voices.
Sorry to hear about the difficulties your sister has had. I am quite aware that many people find nothing to celebrate in the human differences that get called by some “schizophrenia” and “schizoaffective.” But it is important to notice that quite a few people, often people who at one point in their lives were made miserable by their differences & who had all the experiencenes most commonly labeled “schizophrenia”, found a way to manage them well & eventually appreciated them. And I think if the mental health system noticed that possibility, they would be more able to help people like your sister accomplish the same result.
You might want to read the book “Living with Voices: 50 stories of recovery.” Most of these people had been diagnosed with schizophrenia & often were totally miserable for years, but then they got better, and a big part of it often came from accepting that there might be something meaningful and even useful in experiences that mainstream psychiatry saw only as “sick.”
I been waiting to hear this for a long time, sz is a gift, meds or no meds has nothing to do with it. thi has been a way of percieving the world for much longer than or new society. society has it’s pluses and it’s minuses, but we shouldnt foget where we come from.
Whatever works on the road to functional recovery can be deemed productive. If someone is capable of improved functioning because he or she accepts their auditory hallucinations and learns to live with them great. We should not readily accept however that their recovery is complete because they have attained an improvement in their functional capability and quality of life.
I am inclined to agree with Sarah and suggest that the affected individual, given a choice, would no doubt choose to live their lives without the interferences of these delusional thoughts.
In many respects promoting that one should embrace these interferences as a “gift” is an acknowledgement by the individual advocating this that they are powerless to alter the outcome sufficiently to effect a complete recovery yet there are people who recover completely and who move beyond their delusional psychosocial systems.
I hear it that you “don’t doubt” that if individuals were given a choice, they would choose to live without something like the experience of hearing voices. Yet I have heard some voice hearers, who had made good recoveries and had a clear perspective from which to make a choice, say that they were happy to have the experience of hearing voices, that it did enrich their lives in various ways. So everyone is not the same on this.
There are those who see being gay as something like a disability: they imagine not only that people don’t choose to be that way, but that everyone who is gay if given a choice not to be, would rationally choose to be heterosexual. In fact it is more complex than that. While it is generally true that people did not become gay as a result of a “choice” – they just grew up that way – many if now given a choice would happily stay gay, and this is more true in places where discrimination is low.
So what about people who have recovered in other ways, but who still hear voices and wish they didn’t? I would encourage them to look at what is distressing to them about the voices, and to look at a variety of options for reducing that distress. They might find ways of getting the voice hearing experience to stop, or they might find ways to reduce the distress while the voice hearing experience continues.
I think we cause problems for others when we try to get other people’s experiences to change because it distresses us, and we start thinking we should decide what other people’s experience should be. And people cause problems for themselves when they get too rigid about what their own experience should be, and come up with fixed ideas about that, rather than explore the variety of ways they might find to relate well with their own experience. I suggest really paying attention to what does work for people, and then coming to appreciate the diversity that exists in ways to be healthy.
(By the way, hearing voices is not in itself a delusion, as long as one does not have a delusional belief about the source of the experience. If one has no delusional beliefs about source, then it is really just another form of thinking.)
I for one of the “affected individuals” can say with certainty that I wouldn’t want to miss the experiences Alan calls “interferences”. “Interference” is a judgement based on cultural norms and values. As Ron touches on when he talks about discrimination, a whole lot of the suffering and distress that comes along with experiences that are judged “abnormal” by our culture is exactly caused by this judgement, rather than by the experiences themselves. What if we grew up in a culture that views things like hearing voices, holding unusual beliefs, experiencing unusual thought activity (“thought disorders”), etc. a perfectly normal, even meaningful, thing? That views them the perfectly natural response to traumatizing life events, and the incentive for personal growth and development they are?
Many of the experiences I had during crisis were absolutely terrifying at first. But what made them terrifying was that I didn’t understand them, because I grew up in a culture that doesn’t (want to) understand them, that itself is terrified by them, and judges them to be an “interference”, an illness, a defect. Once I understood, I realized the immense value of the experiences in terms of coming to an understanding of myself and the world on a somewhat deeper level than I see most people ever achieve (sounds arrogant, I know; so be it). It’s like Jon Kabat-Zinn says about his traumatic childhood: “It was just perfect.”
Science is well on its way to be able to create what on the surface may appear to be the perfectly happy society. No one has to experience psychological distress of any kind anymore, thanks to the achievements of psychopharmacology and maybe (probably) even psychosurgery. No matter how much abuse, exploitation, oppression, no one reacts naturally distressed to it anymore. Nothing interferes with our culture’s abusiveness anymore. – And this is what really renders unusual experiences, beliefs, perceptions, etc. “interferences”, isn’t it? That they interfere with, interrupt, disturb the smooth continuation of the abusiveness of our culture, that they prevent our culture’s dysfunctionality from functioning altogether unchallenged. – Brave New World. Is that really where we want to go? Is that where the future of humanity lies? In the abolition of everything that makes a human being human? Needless to say: that then will be the end of humanity.
I know what I’d choose if I were to choose between an alienated, indifferent, and by and large empty existence, and life with all its challenges, insecurities, and the whole array of experiences and emotions from despair to euphoria. Indeed, I was offered the first, and refused the offer. I haven’t yet regretted my choice, not for one second. Not only because of the side effects that usually come along with psych drugs, and that often cause a lot of suffering themselves, but mainly because being alive and conscious is such an exciting experience, I can’t get enough of it.
Great…so we will agree that one size does not fit all and while some choose to embrace the distinctions that set them apart from what society deems the cultural norm others wish to eradicate what they view as an interference to their lives.
The individual who feels powerless to their psychotic breaks and has their vocational pursuits destroyed because they can’t function sufficiently to attend school or work consistently no doubt views their delusional psychosocial system as an interference.
The intriguing question regarding an individual who clearly has the choice to retain their “gift” or discard it, and chooses to retain it is what is motivating this individual? Is he or she operating from a state of fear or are they seeking pleasure? And, at that point during their recovery, do they really have the choice?
I agree fully with the assessment regarding “A Brave New World” and the perils associated with a medicated society and do not advocate neuroleptic drugs. There are people however who will suggest that they have recovered because they comply with the neuroleptic prescriptions. The relevant point as I indicated earlier is whatever works on the road to recovery can be deemed productive. I however will hang firm on my belief that a goal associated with recovery is to have the individual fully empowered and that to the extent that they are a victim to any environmental stimulus that becomes a catalyst for psychotic experience that they are not fully empowered and are not living an unencumbered life.
It is a frightening experience to face the world without the security of a delusional system to retreat to when the stresses of life seem insurmountable yet once this fear is successfully overcome the affected individual really does have the benefit of free choice available. I will assert that any individual who has recovered to this level of free choice will no longer have their delusional psychosocial systems available to them as an option because they have recovered sufficiently that that delusional system no longer serves any productive purpose.
In every instance life is an evolving experience and to suggest that someone has recovered because they have made it successfully through one gate or another is rather naive. At best as I have said elsewhere no one recoveres from schizophrenia because schizophrenia does not exist. At best they recover from their own limiting beliefs; beliefs that in the presence of particular environmental stimuli become unbearable to the extent that they need to break with their current experience and retreat to a delusional system to try to cope.
Alan: The thing is that I today do choose whether I want to live the delusion, or not. So to speak. To be empowered, in the way you describe it, equals to being enlightened. To be enlightened doesn’t mean, that one has no thoughts or feelings anymore, but that one is conscious of one’s thoughts and feelings, and of the fact, that one is not one’s thoughts or feelings. In the very same way as I’m conscious about the fact, that I’m not my voices or delusions or whatever else from the list of “symptoms”. Consciousness is, what empowers me to make use of “symptoms” as tools, not in order to flee reality, but to, on the contrary, understand it.
Don’t get me wrong, I don’t think of myself as enlightened. Life is an evolving experience, as you say. So is consciousness. However, I see a whole lot of people who are “normal”, who do not hear voices for instance, who nevertheless suffer considerably, even though they seem to “function” on the surface. They succeed in repressing their trauma, keep it hidden from themselves – and they act it out, big time, through more or less socially acceptable self-/destructiveness: alcohol, nicotine, abusive relationships, wars, discrimination, exploitation, etc. etc.
If you ask me, it’s this “normality” that is the real delusion, or mass-psychosis. And I’m proud to be somewhat maladjusted to it. Indeed, when you reach the point where you realize that your “symptoms” are not who or what you are, that they are signs rather than symptoms, and start to understand their language, that is when you truly come to an understanding of just how traumatic reality is. To say consciously “yes” to “symptoms” is not to turn a blind eye to a reality that is unbearably painful. It is the opposite. It is facing and accepting reality which the “symptoms” ruthlessly confront you with.
I do not embrace “symptoms” because I can’t stand reality, and they’d offer me a refuge from it. I embrace them because I want to know all about reality. If I wanted to escape, and remain unconscious, I’d definitely chosen to pop mind-numbing pills, that had rendered me more or less incapable of investigating and
understanding the sign-language of my unconscious (=”symptoms”).
So, if you think that MadPride, embracing “symptoms”, equals to escapism, think again!
Yours appears to be an illuminated interpretation. I agree with virtually everything you have said in your last post and particularly agree with the mass societal psychosis as you have described it.
I wonder however, given your current state of enlightenment, what your “symptoms” are symptomatic of? If we viewed them within the context of sign language (or perhaps bells and whistles) arising from the unconscious or subconscious mind, set off by some representative stimulus, does that not suggest that there remains something missing or unresolved and that given resolution that the unconscious or subconscious would no longer be compelled to sign the significance of a perceived threat because that threat no longer exists?`
I anticipate that your response to the question will be enlightening and I look forward to receiving it.
Alan: Unfortunately (?) my name is not Buddha, or Jesus Christ. I’m not constantly in a state of enlightenment. I’ve had my moments, but to enlightenment, too, it applies that “this too shall pass”. So, as long as we live in the world there’s always a new, unenlightened moment – something missing or unresolved – that needs to be enlightened in order to understand it (and the world through it). That’s what makes us human, that we have an unconscious, that we’re not perfect(ly enlightened), divine. – Actually, I doubt that even Buddha or Jesus, as the human beings they were, were perfectly enlightened. – Existential suffering, whether it comes in the shape of what is called “mental illness”, or whether its intensity and frequency allow the person who experiences it to go unlabelled, is what characterizes the human condition per se – ever after the Fall Of Man. It’s the incentive that is needed to make us seek enlightenment. It’s the incentive for the personal development, growth, transformation to take place, that is being alive. I like to be alive, even though it means that I do suffer existentially every now and then. And although it probably sounds like I’d suffer more than someone who doesn’t hear voices, for instance, I actually think, I suffer less than many “normal” people, who haven’t yet realized that their suffering is not who they are (cf. people saying: “I am mentally ill”).
Don’t know, how enlightening this is. I hope, it makes at least some sense.
Thanks! I wasn’t very clear. I was proposing that perhaps something from the past was missing, unresolved, incomplete, and that may have been the source aroused in the presence of some current stimulus that provokes “symptoms”. Having said that my interpretation is you are enlightened and certainly your discussion does not define any “mental illness” at least in my interpretation. I think one of the great problems with a diagnosis is it creates a limiting context within which we think and within which others view us. Our need and propensity for existential suffering may merely be yet another limiting belief. Why do we believe we should suffer? You are a great inspiration and again I thank you for your candor.
Alan: This too, in my opinion, is part of being human, that we are not always fully aware of everything we experience. Actually, we are born rather unaware, unconscious, and need to go through a kind of learning process in order to reach a true understanding of ourselves and the world. And that learning process is also fuelled by those experiences from our past, that we, at the point of time where they occurred, still were too unconscious to understand immediately. The learning process, The Way, is what life is all about. The moment someone actually succeeds, and resolves and retrieves everything from his/her past, once and for all, its the end of the way, the end of life. Every single human being who’s still on the way and alive, also experiences “symptoms” of “mental illness” = signposts on the way.
The more in denial, the more deluded a society is, the more unconscious are its individuals, and the more existential suffering and destructiveness it creates. Because the ego is in control. The ego is a great tool to have, but it is a lousy master, who doesn’t give a damn for anything or anyone but itself. Existential suffering is our self’s, our true nature’s rebellion against the tyranny of an ego in control. If we didn’t suffer existentially, the ego would have destroyed us, our selves, our true nature and nature as such, a long time ago.
Anyway, I don’t think, we necessarily need to suffer in the rather unconscious way, that often gets labelled “mental illness”, and that, indeed, can be quite destructive itself. It may sound paradoxical, but when we become conscious of our suffering, that is when we realize that we are not our suffering, we don’t suffer anymore, and we can use our suffering in a constructive way.
Btw. having an ego is what distinguishes us from other life forms on this planet, who are not capable to achieve consciousness to the same extent as we are, but who, in spite of their unconsciousness, do not suffer existentially (apropos of “schizophrenic” mice…).
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