How will we know when the war against stigma in dementia is won? We won’t.

stigma 2

How will we know when the war against stigma in dementia is won?

We won’t.

I once went to see Kay Redfield Jamison talk at the Society for Neurosciences conference in Miami in the late 1990s. She is both a professor of psychiatry and lives with from bipolar disorder.

She has previously gone on record to identify that stigma can prevent help-seeking behaviour, and this finding extrapolates across a number of conditions such as obesity or drug addiction.

“It was difficult to make the decision to be public about having a severe psychiatric illness…. but privacy and reticence can kill. The problem with mental illness is that so many who have it—especially those in a position to change public attitudes, such as doctors, lawyers, politicians, and military officers—are reluctant to risk talking about mental illness, or seeking help for it. They are understandably frightened about professional and personal reprisals.”

This “enacted stigma” is very dangerous.

Recently, at a meeting of the Mental Health Foundation, I was in a small roundtable discussion of ‘the visibility of dementia’.

One of the other delegates, himself in a wheelchair, argued that he was proud to be a wheelchair, but not proud of his dementia.

This observations raises a number of issues. Firstly, individuals react to disabilities in different ways. Secondly, it is not necessarily true that identifying a disability is empowering.

We were discussing this in relation to whether a rights-based approach, based on the legal rights which attach themselves to dementia being a disability, was an empowering phenomenon.

A right against being unfairly treated unlawfully constitutes ‘discrimination’, and use of the term discrimination orients unfair attitudes and actions of the perpetrators and society rather than on faults in the “service user” such a person with a mental health problem.

One of the lingering issues about ‘dementia friendly communities’ is how one recognises a person in the community to be friendly to; or maybe this is genuinely not the point, in that communities should be friendly to people whether they are ‘secret shoppers’ or not.

Prof John Ashton in discussing the recent devolution of health and care services in Manchester alluded to a whole ecosystem of services needing to be devolved including financial services. In the context of ‘integrated health’, it is now known that wellbeing is critically dependent on environment such as housing or transport.

Erving Goffman in his seminal book on ‘Stigma’ (1963) calls stigma ‘a trait which is deeply discrediting’.

He refers to the visibility of stigma:

“Some signs carrying social information, being present, first of all, for other reasons, have only an overlay of informational function. There are stigma symbols that provide examples : the wrist markings which disclose that an individual has attempted suicide; the arm pock marks of drug addicts; the handcuffed wrists of convicts in transit;or black eyes when worn in public by females”

A person experiencing a delayed discharge (perjoratively called a ‘bed blocker’) living with dementia may not visibly be living with dementia. There will not a label on his or her forehead saying ‘I live with dementia’ (but there have been initiatives where patients with dementia are identified in hospital to aim to improve their patient experience and outcomes).

Likewise, a person with the HIV positive serological status may not visibly have visible stigmata of disease.

And yet these are the people singled out by Katie Hopkins (dementia) and Nigel Farage (HIV).

But Hopkins language has maximum impact:

It, arguably, plays on a ‘perceived dangerousness’ of that person to society, in the same way that Farage’s allusion is to a person with HIV unfairly using up scarce resources.

This ‘perceived dangerousness’ phenomenon is common in stigma situations. Take for example people’s reactions to someone shuffling along the street – who then gets attached to the label “the stereotypical ‘chronic psychiatric patient’”. Even though the crowd do not know the specific label, the patient is avoided and socially rejected.

It is worth examining in ourselves what degree of offense we all tolerate. It is not uncommon for me to attend lectures from Professors specialising in stigma who use words like ‘dementia sufferers’ referring to people who are actually living well with dementia.

David Steele raises some perceptive issues here in a previous article in the Guardian:

“Even children’s television seems to have gotten in on the act. One study in the British Journal of Psychiatry found that out of a sample of one week of children’s television, 59 out of 128 programmes contained one or more references to mental illness. Terms like “crazy”, “mad” and “losing your mind” were commonly used to denote losing control. Six characters were identified as being consistently portrayed as mentally ill. These characters were almost totally devoid of positive characteristics. I’m not sure if one of these was SpongeBob Squarepants. Why would a porifera even need trousers? Some sort of body dysmorphia ?

The sign “You don’t have to be crazy to work here but it helps” has become so common that it’s a cliché. People describing themselves as “a bit mad” usually mean that they’ve worn a sparkly hat at some point. Terms like mentalist, psycho, bonkers, insane and barking are thrown around like loose pennies in a conversational washing machine. Look at Terry, the mentalist. He’s bonkers. He’s so drunk he’s gone outside to punch the thunder for annoying the moon. Mad!”

Two years ago, Thorpe Park was accused of ‘stigmatising mental illness’ for naming a Halloween attraction “The Asylum”. Mental health advocates warned that having actors chasing people around ‘The Asylum’ pretending to be patients reinforces stigma around mental illness, and yet a Thorpe Park spokeswoman said that the attraction is not meant to be offensive nor ‘a realistic portrayal’ of mental ill health.

In 2012, the Alzheimer’s Disease International ran a campaign on tackling the perceived stigma of people with dementia, citing that a societal shift was needed to change opinions, such that people with dementia felt included.

They warned that,

“Stigma could be a major barrier to finding solutions for the problems related to Alzheimer’s disease and other dementias, including low rates of diagnosis and service utilisation. Therefore, it is essential to take action to dispel lingering myths about dementia to reduce stigma.”

But they recommended that,

“Give people with dementia a voice and let them speak about their experiences in public. They have proved to be powerful spokespeople for Alzheimer associations.”

I don’t think that people living with dementia should say nothing on the one hand, but on the other hand I don’t feel we need to fuel this with yet further publicity (like this blogpost).

But I feel people who perpetuate stigma over health, including dementia, are dangerous people.

And when will we know the ‘war against stigma’ is won (as dementia likes its battle analogies?)

A world without Katie Hopkins or Nigel Farage?

No idea.

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One thought on “How will we know when the war against stigma in dementia is won? We won’t.

  1. Shibley, the amazing Stella Young took back stigma, proudly and sardonically labelling herself as a “crip”. I learnt THE WORST disAbility jokes from the rounds of appalling “PC incorrect” Christmas emails circulated by the DisAbilities Unit in the NSW public service- so glad I was encouraged by my disAbled colleagues to pass on that culture that re-empowers itself with a wicked sense of social shock value!

    I think that any neurological condition, psychiatric or otherwise, immediately evokes “they’re not a full quid” ie no right to citizenship, a social paria, bludger, a “weight”, a social burden. “Unproductive” or deserving only of a token “wage”. Easy to exploit. Exploited.

    V’s great aunt, Italian Australian, a free spirit, didn’t fit the family mould and was locked away out of sight in an “asylum”, drugged into mindlessness. This was only 50 years ago in Oz. In V’s consciousness, as for many others, particularly those now in their 70s and 80s, these social reminders live on. It’s historical myth, deeply embedded, as your examples show so brutally.

    People like you and me, whose own lives have been attacked by stigma, can attack too. Like our Koala friend we can be fierce. I guess we have to choose our “action arenas” carefully, and analyze how to best use our preferred media to reach whatever audiences we think might give a damn, might have a vested interest in change.

    “Solidarity forever” just ain’t enough, matie!

    We have no positive political horizons in Oz re social services. We’re stuck with at least another 18 months of neo-fascist systematic dismantling of decades of great work. We have to survive this. PWD who were diagnosed before 65 won’t qualify for the National Disability Insurance Scheme. Nor will people with other disAbilities who hit 65 by July and find their pre-existing entitlements and services cut off as they get lumped under “Aged Care”.

    My late partner Betty, who battled with multiple complex health issues and died 12 years ago, was 23 years older than me. Her stroppiness in demanding all she was entitled to through the public health care system still resonates in my heart and memory. I learnt wisdom from her. People like her, and K, do more to change public perception than we ever can….we’re the onlookers, the personal survivors, tough as our own personal experiences may’ve been. But we can witness and keep on circulating the yarns of your dad, my mother, our friends. Keep on writing.

    Love to you-I was waiting on this blog.

    Like

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