. [insert condition of choice] awareness day/week/month. I’ve been pondering what we mean by ‘awareness’ and what these events achieve. I don’t want to be naturally cynical. They can be a good focus for fundraising which is never a bad thing. It does make me question what ‘awareness’ itself actually means and whether we need to rebrand and rethink how we share and spread information about specific conditions and illnesses.

Last week, for example, was dementia awareness week, which I’m going to use as an example, but the same points follow in a similar way for Mental Health awareness week, or epilepsy awareness week or breast cancer awareness week. I am by no means saying that these are ‘bad’ things. They aren’t. People need to have a good understanding of the range of issues that are faced by people who have these conditions. For example, concerning dementias, I think it’s really useful to present information about dementias and the way they affect people as well as  how we can be moving forward in promoting good dementia care. I have worked in this area for many years and think I’m sensitive to the need to break down attitudes that marginalise people who have dementia. Does an ‘awareness’ week do this? Perhaps.  I am of the mind though, that when we advocate ‘awareness’ we are selling ourselves short. Awareness is the easy part. Let’s roll out a few adverts then we’ll have an ‘aware’ population. Or will we? Are we selling ourselves or our issues short when we target these weeks/days/months? Does an awareness week change the minds of anyone who had a prejudicial attitude previously? Or – like ‘NHS change day’ are we pledging to do things we would be doing anyway? And even if we are doing what we would be doing anyway, perhaps doing them en masse or with a public pledge, it focuses our collective minds because that’s part of human nature.  Does it allow us to place conditions into boxes and exacerbate stigma – and this is a week for mental health, next week is a week for dementia and then we have a week for asthma without needing to consider the complexities of multiple needs which do not fit into boxes and people who don’t want to be defined or understood on the basis of diagnoses? I don’t have any answers to these questions but that are ones that I ask myself frequently.

I also ask  myself what do we want to achieve through awareness? If it’s breaking stigmas, should we direct our efforts in different ways? Will adverts target and highlight issues to people who have prejudices against illnesses they don’t understand? Maybe. Or maybe awareness weeks/days/months are about actually bolstering support, identification and a sense of community for those who are affected by the issue of the day/week/month. Thinking of dementia awareness week, for example, does it, perhaps provide in itself,  support and understanding to people who have dementias and their families? A focus on the services provided and some more opportunities to join together and form peer support networks and carer support networks? I didn’t see much of this although, to be frank, I wouldn’t be the person that would be targeted, having neither a diagnosis of dementia myself nor caring for someone with dementia.

I found myself thinking, last week, what difference does ‘awareness’ make? Even if it’s just internal thought processes of one or two people, it’s useful but my concern is that sometimes it can be easy to be complacent and fit conditions into ‘events’ that then drift into the background for the rest of the year. Or we can get ‘awareness’ fatigue. Perhaps we need more awareness of what awareness actually means. I think what I’d like to see is more discussion about what ‘awareness’ means and what outcomes we want to achieve with awareness. Awareness is good. Awareness is useful. Action leading from awareness is, perhaps, better though. Even if the actions are small steps. My fear is that we want to compartmentalise and attach labels.  I don’t think there’s any harm in awareness weeks but sometimes I like to think what is the actual aim? Is it awareness or should we be a little more ambitious and have more ‘action’ weeks?

3 thoughts on “Awareness

  1. One of the things awareness days do is advertising. By increasing the share of a given population that is aware of the existence of a given condition and its symptoms awareness campaigns also serve to possibly bolster a market. In his Pharmaceutical Reasoning Andrew Lakoff discusses a French laboratories attempt to study genetic markers for bipolar disorder in Buenos Aires. The problem that they came across was an total absence of people with the diagnosis, which Lakoff discusses in terms of the peculiarities of the Argentina’s history and its effects on the development of the psy-disciplines there. In order to get around this a series of newspaper articles were written that informed their readership of what bipolar disorder is and what its symptoms are. Within a couple of months they went from having 0 bipolar patients in the hospital undertaking the study to having 2 thirds of the 200 patients required.

    Lakoff goes on to discuss a 2001 “Anxiety Awareness Week” in Argentina. Following the awareness week Lakoff reports that hospitals were “inundated” with people reporting symptoms of stress, anxiety, and panic. What the awareness campaign didn’t mention was that Bago, a domestic pharmaceutical company, that produced alprazolam had sponsored the event. A couple of months later a rep from Bago was cited in a newspaper article as reporting that the company had enjoyed record sales in the month following the campaign.

    In 1998 SmithKline French applied to license its brand of paroxetine for use in social anxiety disorder, a little known diagnostic category at the time, and would go on to produce posters and other adverts about social anxiety with the stated purpose of “raising awareness”. Of course, once awareness had been raised the FDA gave SmithKline French their license.

    The US organisation ‘national alliance on mental illness’, one of its biggest mental health advocacy groups, cites its founding sponsors as Abbott Labs, Bristol-Myers Squibb, Eli Lilly, Janssen, Pfizer, Novartis, SmithKline Beecham and Wyeth-Ayerst Labs.

    Even when organisations don’t have links to the psychopharmaceutical complex we should always be mindful of increased awareness of conditions at a time when pharmaceutical firms are pushing exactly those conditions. In all of these examples the pharmaceutical firms are invested in awareness raising campaigns in order to create markets out of populations. For some this means they actually produce disorders but I don’t think that’s likely- although I’m sure they wouldn’t be concerned with overdiagnosis. Instead I think we can say that at least in instances like these mental health awareness campaigns often function as a node in the circuitry that exploits human suffering and turns psychic pain into a field for producing economic value. And this can be perfectly despite campaigners best intentions. Similar arguments can be made about diagnostic specific advocacy groups and their support by and of specific pharmaceutical companies.

    Obviously this isn’t to say the dissemination of knowledge about madness doesn’t also do good. Education is important (I’d like to see more mental health in schools), as is giving an experience a name, and the effect you discuss about drawing people together around a diagnosis is one that can also have profound effects (although, I am more in favour of non-specific formations).

    One thing the recent Time To Change reports showed though is that awareness campaigns around stigma don’t seem to achieve an awful lot, if anything. I think this is probably where action-weeks would have a much better impact.

  2. Pingback: Well done dementia-friendly Waitrose in… Paddock Wood! Local information is good :) | Whose Shoes?

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