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Wednesday, November 9, 2016

Anosmia, the disability of being ‘noseblind’, is no laughing matter

TheConversation: Imagine a home audio equipment company promoting their new, cutting-edge sound system. The company uses a humorous advertising campaign and warns people that after they try their new product and hear all the wonderful sounds, they will realise they have been #earblind their entire life.
Or, imagine a TV brand tweeting about a new model that allows you to see every colour perfectly. They promote it using a hashtag and promise people will not feel #eyedeaf anymore.
If a company mocked deafness or blindness like this, there would rightly be an immediate backlash from affected populations and advocacy organisations, probably resulting in an apology – and the end of the offending campaign.
But for the past two years, Procter & Gamble has been promoting its home freshener product, Febreze, using a “mockumentary” style campaign to warn people that they might have become “noseblind” to bad smells in their houses. It notes that other people can indeed smell their bad odours and will judge them.
Luckily for those “noseblind” people, the company provides a solution. A series of videos, starring actors and displaying a funny “noseblindness” intervention have had more than one million views so far on Youtube.
The problem is that “noseblindness” is a real condition: it’s called anosmia, and more than 5% of people across the world suffer from it. By making fun of their everyday problems, the campaign has offended people who have no sense of smell, appropriating their disability and turning it into a hashtag.
Unfortunately for people with anosmia, their problems aren’t so easily solved: the condition has no cure.

Anosmia – the real noseblindness

Anosmia is a complete loss of the ability to smell. Some people lost their sense of smell as a consequence of a nasal condition or brain injury, while others are anosmic from birth.
Research shows anosmia is related to increasing levels of stress and depression, as anosmic people face major challenges in everyday life. A recent study done in the UK exposed high rates of depression (43%) and anxiety (45%) among the anosmic population, as well as problems with eating (92%), isolation (57%), and relationship difficulties (54%).
Three areas of life concern people with anosmia the most. First, because they are not able to discern the kind of nearby dangers that people detect through the sense of smell, such as smoke or gas leak or burning or spoiled food, they face safety risks. And because loss of smell usually implies no sense of taste, cooking and eating food loses much of their joy. Anosmic people also often feel social anxiety, because they are concerned about their own body odours.
Being unable to smell their loved ones is also a major issue: for example, when a parent cannot smell his or her newborn child. People with anosmia are dependent on others to identify smells for them, which leads to frustration and a decrease in autonomy.

Misappropriation

Anosmia affects millions of people in the world, with serious consequences for their quality of life. Yet there was no worldwide reaction to P&G’s “noseblind” campaign. No patient advocates, organisations or media covered the topic. Anosmic Facebook and Twitter users were upset about the campaign, but it has not advanced any further.
In an interview that I conducted with her, Michelle Krell Kydd, a renowned scent expert and writer who was involved in the conversation around the campaign, explains that using a term “noseblind”, which is in the anosmia community’s lexicon, is a form of misappropriation.
The problem, Kydd thinks, may lie in the fact that olfaction has so far been a “neglected sense”. As she told me in a recent interview I conducted with her:
olfactory lexicon in the West is not highly developed, so this also factors into the cultural perception of smell which I describe as ‘the bastard stepchild of the senses,’ though this is changing due to research on the sense of smell and olfactory lexicon.
Even if marketing executives from Procter & Gamble did not intend to offend people with disability, as they have explained to anosmic Twitter users in several conversations, they still had to issue a formal response.

Loss of smell: untreatable and invisible

At the heart of this campaign is the issue of anosmia generally: there is just little awareness of the condition.
This invisibility is a consequence of several factors. The loss of smell is invisible itself; there’s no cure for anosmia (so no health-care system to support it); there’s no available smelling aid; and there’s a dearth of patient advocacy organisations.
People with anosmia constantly have to explain their condition. And they’re often treated with a lack of sympathy by those with no olfactory problems, who trivialise or generally disbelieve anosmic suffering. Another problem that people with anosmia face is a general lack of concern by medical professionals.
Apart from not being physically visible, anosmia is also invisible in regulations and health insurance system. A recent study featured testimonials by anosmic people expressing their dissatisfaction over the way the medical profession treats their condition.

Is there hope for recognition?

Recently, efforts have been made to make anosmia more prominent in the public discourse. Several organisations are struggling to raise attention to anosmic people and the difficulties they face in everyday life. But recognition for this disability is still far away.
In my interview, Michelle Krell Kydd was optimistic about the future:
When people understand why smell is incorporated into the human organism and how precious it is to their enjoyment of life and survival, you can begin generating momentum. This is something I think about every day. I’m an optimist and a smell evangelist, so I smell transformation in the air.
Meanwhile, P&G’s campaign is still active and being positively reviewed by advertising and marketing experts. And Twitter users have started to use the #noseblind hashtag to express their concerns with everyday odours, unaware that well before they were introduced to this term, it was already a reality for millions.
Sadly, the reality of not being able to smell is not something anosmic people can escape by using a home freshener.