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Friday, 10 January 2014

Time to change for Time to Change?

Flo Bellamy

Does a diagnosis simply confirm
another's weirdness?
Photo: Juan Eduardo Donoso
The Time to Change campaign is the biggest mental health stigma busting campaign in the UK, receiving an estimated £21 million between 2007 and 2011.  Given this level of investment I would hope it made significant differences to stigma surrounding mental health problems.  The truth is that it hasn’t, and in some areas of stigma, prejudice has increased.

In the 2011 ‘Attitudes to Mental Illness’ survey report, many results were worrying.  It appears that the percentage of people who would not want to live next-door to someone who has been mentally ill has risen compared to recent years. Also, more of the general public believe that someone should be hospitalised as soon as they show signs of mental disturbance. It’s also more probable that a woman would be considered ‘foolish’ to marry a man who has suffered from mental illness, even though he seemed fully recovered.

And these are at the tip of the iceberg.  When it comes to measures of tolerance of the general public towards ‘mental illness’, a decrease was found.  The percentage of people who agreed we need to adopt a far more tolerant attitude toward people with mental illness in our society dropped from 91% to 86%. Given the level of investment described in the first paragraph, it’s worth asking why this is happening.
 
Time to Change has a mission to educate the public and teach that mental illness is an illness like any other.  I believe this is the first point on which the campaign is doing a massive dis-service.  The problem is that there is yet to be any conclusive evidence that this is the case.  There is no physical, objective test that a psychiatrist can carry out in order to diagnose a  mental illness.  A mental health diagnoses is a label that is based on a consensus about clusters of experiences rather than laboratory tests.  As Thomas Insel, the director of The National Institute of Mental Health (NIMH) stated, ‘In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever.’

The problem with spreading the myth that emotional distress is a biological illness of the brain is that it discourages the view that we are all unique human beings, reacting to the world around us.  Difficult life experiences can mean a person can become extremely distressed.  Blaming the brain creates a situation where people’s life stories are not heard, and the need for social justice is ignored.  As Anne Cooke and Dave Harper put it in their article, When the Ads Don’t Work, ‘We don’t talk about the stigma of being a woman, or being black; we talk, quite rightly, about sexism and racism.’  The problem is not a biological illness lying dormant somewhere in a genetic code. The problem is that life can be really hard.

I don’t wish to diminish how helpful people have found psychiatric drugs, nor how useful many have found a mental health diagnosis.  I acknowledge that the language of mental illness has all sorts of advantages, especially when applying for financial support and getting time off from work.  I understand it also means that families and friends take distress a lot more seriously, and of course, there is nothing wrong with wanting our experiences validated.

But as with all language, the language of mental illness has limitations.  It creates a need for treatment and the assumption that all people need to be cured. It also takes responsibility away from individuals and places it in the hands of a mental health system to cure them. A cure isn’t always on the table, though, and you may also get stuck with a label for life: one that is dragged out time and time again, long after you’ve finished using mental health services.

Someone recently said to me in a Twitter discussion that they found it insulting that I referred to mental illness as ‘just’ distress.  Let me be clear, there is no ‘just’ about my use of the term distress.  Distress can be debilitating, horrifying, excruciating, hell on earth even. It is always real and important and always deserves to be heard and understood.  I find it saddening that we need to be stamped as being physically sick before society takes our understandable distress seriously.  Our distress isn’t real, it seems, unless it comes with a biological label. 

But how does this all fit into Time to Change?  Well, seeing emotional distress as sickness or disease doesn’t seem to promote greater acceptance by the public.  As Mehta & Farina (1997) point out, seeing distress as a separate entity, one that can only be controlled with the medication, increases fear.  Societally, we can believe there is an entire group of ticking time bombs who need to be controlled (the mentally ill).  There also appears to be a perception that there is a clear dividing line between those who are normal and the mentally ill. Society, it seems, has a good idea of what distress is and what causes it. When it is labelled as mental illness, human behaviour is more likely to meet with fear and confusion.


Time to Change attempts to tackle such fear about the other (the group of people labelled as mentally ill) with its ‘1 in 4’ message.  The idea is that 1 in 4 people are affected by any mental health problem in any given year.  The image is on the left. The idea to this picture is to educate the public that mental illness can happen to anyone.  But I ask you to think about what this achieves. There are four figures.  Three are the same colour: a colour that blends with the background. There is one figure on the edge of the group, coloured bright white.  It is designed to appear very differently to the other three ‘normal’ figures.  I wonder how this does anything less than reinforce the notion of otherness?  Difficult life experiences do not select 1 in 4 human beings.  We should instead promote the idea that anyone can experience extreme levels of distress and confusion.   It’s good to talk, but talking about biological illnesses is not always what this society needs.  People instead need validation of the idea that life is difficult and it is understandable to feel crazy sometimes.

I would like to hear what Time to Change could do to address this issue of maintaining ‘otherness’.  I have asked them, not to get rid of mental illness language and understandings, but to at least give spaces to those who do not find these concepts helpful.  I have not seen a Time to Change advert featuring anyone who does not use illness language or understand their experiences as a result of a misfiring brain.  Their approach, I think, is that it is the language of mental illness that the public best understands.

I’d like to offer the following example to suggest this may not be true. A woman in the weekly space called Mad Monday’s (a community initiative I initiated with the help of others to combat isolation and loneliness) said she was labelled as a personality disorder and experienced severe depression and suicidal ideation.  She said no one understood what she meant when she said those words and everyone would go silent or change the subject.  Another in the group asked, ‘What did you say before you had any experience of the mental health world?’ to which she replied, ‘Well I said I felt like shit and that I wanted to kill myself.’  To which the other person said, ‘And did people understand that?’  She had to admit that they did.

This backs up the point above, that people can connect with distress without necessarily having an illness label.   People hear the word schizophrenia and they become frightened and confused.  But talk about experiences and they can identify. 

Time to Change additionally said they did not give spaces to those who did not find the biological model useful, as it is difficult to recruit people who have alternative understandings. But the language of mental illness needn’t be ditched to challenge the idea that distress is a biological illness.

I’d suggest that Time to Change needs a rethink.  There are serious limits to offering a model of distress so rooted in diagnostic thinking. Time to change perhaps?

Flo Bellamy is co-founder of the Big Mad Experience. You can follow her on Twitter @Flo_Bellamy

14 comments:

  1. Passionately argued. I would question a little bit about the subjectivity of diagnosis though. There are tools and tests that improve reliability.

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    1. Ben, there is no *biological* test that can be done on an individual basis.
      Also, I'm unclear what "improving reliability" means in this context, as it is not provable that there is a biological problem. The only thing that can be ascertained is that a persons behavior is not "normal" and that too is by consensus, and depends on context.

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    2. Hi Ben,

      Thank you for your feedback. I am interested to hear what the tools and tests that you believe improve reliability are.

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  2. Stigma is certainly interesting! The idea that many people still do not wish to live nextdoor to someone who has had a 'mental illness' diagnosis is an intriguing one. As someone who has recovered from severe mental illness, I can't help wondering what my neighbours might think if they knew of my diagnosis? Would it become an item of prejudice or could they focus instead on the fact that I'm a professional who has earned four University degrees since last being hospitalised? That I play an active rolein the community and believe my diagnosis is now meaningless? The list could go on. But yes, it is Time to Change. Studies show that stigma is eroded when people get to know someone who has a 'mental illness'. This seems a far more sensible basis for an anti-stigma campaign than questionable diagnoses and obnoxious visions of 'broken brains'. Time to wake up, I'd say.

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  3. Thanks, Flo, for a very articulate post. A 2013 edition of the British Journal of Psychiatry was dedicated to evaluating the Time to Change project. Perhaps the most interesting article is one that describes an anti-stigma campaign in Canada in 1951 implemented by a Dr Cummings and his wife. It had no effect whatsoever. Revealingly, the author reports that 'townspeople accepted (or ‘normalised’) a broader range of behaviour than did the researchers. Lay people had their own explanations for human behaviour, which were rooted in their knowledge of people's histories, and which they were reluctant to change' (Smith, M, BJ Psychiatry, 202, 49-50.) Well, how very annoying of them to be so reluctant to take on the expert view that was being offered to them! Smith concludes: 'We should resist the temptation to presume that "more of the same" might work in the future, since the Cummings remind us that we have been trying that now for 60 years.' Quite. But it seems the lesson has yet to be learned. We can at least be grateful that ordinary people are determined to cling to their commonsense views (or formulations, as I am tempted to call them) despite the pressure to do otherwise. Who knows, one day psychiatry might catch up with them.

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    1. Thank you Lucy. Yes, I read that paper...I too am pleased that the general population are determined to cling onto their understandings. Despite the efforts of charities to change them.

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  4. An interesting and perceptive post. Thank you.

    My own view is that Time to Change receives significant government funding for two reasons: to create the illusion that 'something is being done' and to use 'stigma' to distract attention from wider and much more significant issues of social justice - poverty, discrimination, racism and our society's deep neglect of children and human values.

    If Time to Change were to mobilise around injustice - as cause and consequence of psychic pain and dislocation - it would find its cosy relationship to Government a lot less comfy - but at least it would be making a real difference.

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  5. Time to Change staff are ordered specifically not to talk about social injustice and changes to the welfare system in particular....no kidding.

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    1. That's right they are, and volunteers, and speaking of and addressing social injustice would do far more to address stigma than anything else given political propaganda. Therefore they, and everyone else who fails to speak of this is a part of the problem

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  6. Time to Change
    Time to sit still
    Time to be quiet
    Time to be grateful for what you have been given
    Time to remember who butters your bread
    Time not to make a fuss
    Thats Time to Change

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  7. Public health will spend millions on ending the stigma around mental illness then spend millions creating stigma around tobacco use. No good will come from promoting hatred and fear.

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  8. Loved this. I cannot find you on Twitter though

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