A while ago I read a press release from the Oticon Company announcing its Focus on Hearing Award. The award is titled “Honoring People Who Defy the Stigma of Hearing Loss” by living full and productive lives. In reading this press release I was taken by the implicit assumption that, of course, a hearing loss is a stigmatizing condition; this was presented as an unquestioned given. Now, in commenting on this press release I do not mean to single out the Oticon Company in any negative fashion; to the contrary, this company is a very reputable one with a long history of sponsoring many public service activities. (Full disclosure: I received this award myself some years ago.) What I’m objecting to is the widespread dissemination of this characterization by the entire hearing aid industry. “Stigma” is a term that I’ve seen applied to people with hearing loss for over fifty years, one that I thought insulting the first time I saw it and even more so now. First, however, let’s see exactly how the term is actually defined.
The two definitions I picked up from the Internet were: “A mark of disgrace or infamy; a stain or reproach as in one’s reputation,” and “A mark of shame or infamy, disgrace, or reproach.” Now besides having a hearing loss myself, I’ve met thousands of people who have hearing losses and I can’t think of any for whom these definitions apply. We can think of a hearing loss in many ways, as a condition that can have a pervasive impact on one’s life, or maybe just as a pain in the neck. But whatever we or some others in our society think of it, its presence can hardly be thought of as a “mark of shame” or some sort of personal disgrace. It is, rather, a fact of life, one that should be prevented if at all possible, or dealt with if not.
Still, I can hardly deny the fact that there is something about having a hearing loss, like its undoubted association with the aging process, which makes it difficult for some people to acknowledge its presence and to do something about it (like getting hearing aids). The problem I have with the thoughtless association of the term “stigma” with hearing loss is that it fosters the development of a self-fulfilling prophecy. Label a hearing loss as a stigma often enough and this is exactly how the condition will be perceived by society in general and, because they are part of our society, by people with hearing loss themselves.
True, there was a time in human history when “deaf” people were indeed undeservedly stigmatized and denied full human rights because of their condition, when the deafness was deemed a heavenly punishment for some unknown, but real, transgression. Over the centuries, as our societies have evolved, deaf people themselves have – largely through their own efforts – dispelled the original stigma connotations of a profound hearing loss. Perhaps what we’re seeing now, with hard of hearing and late deafened people, is some sort of diluted descendent of this original application of the word “stigma.” It’s true that the meaning of words change over time and I doubt that anyone currently applies the term to people with hearing loss in its full, original, dictionary sense; nonetheless, these original definitions remain and are bound to influence our perceptions and thus affect current behavior.
Hard of hearing people of today are in a vastly different world and situation than congenitally deaf people were in years ago. For the most part, today’s hard of hearing people grew up with normal hearing and it wasn’t until later in life that a hearing impairment occurred. It seems to me that current attitudes towards a hearing loss and hearing aids coincide with, and perhaps reflect, the advent of wearable personal hearing aids. Previously, there was no really effective therapeutic tool that could directly address the hearing loss itself (except for ear trumpets and ear horns, and these were never popular or widely used). The affected individuals themselves were largely “invisible” (and not just the condition itself). But, now, personal hearing aids have changed the situation, and effective measures can be employed to reduce the impact of a hearing loss. People have been able to leave the closet. Paradoxically, however, the widespread availability of effective help, which also happens to be very visible, has called attention to a condition that had previously been virtually ignored by society, thus fostering the attitudes that bedevil us to this day.
Personally, it took me years to realize that a hearing aid was often viewed by much of society as the sign of a stigmatizing condition. My early experiences with amplification (going back nearly sixty years) were mostly positive and it took me a while, and only after I became an audiologist myself, to realize that my experiences were not typical. I received my first hearing aid at the Walter Reed Aural Rehabilitation program, along with about 25 or 30 other young men, during an eight week residential A/R program. We had no choice; we were simply issued these aids, ordered to wear them, and informed that we were lucky to have them. Unlike previous models, these were “tiny” mono-pack body-worn hearing aids (about the size of a pack of cigarettes). They helped us hear better, and we indeed felt lucky to have them.
In retrospect, it is clear to me that our explicit self-acceptance of the hearing aid likely precluded any negative perception by others. After receiving my first aid, I was stationed in North Africa and during that period visited many countries in Europe. I cannot recall an instance where I felt stigmatized by wearing my clearly visible hearing aid. Because I accepted its necessity in a matter-of-fact fashion, it was so accepted by the people I met. At the most, when questioned, I would say: “It’s a hearing aid that helps me hear better much like those glasses you’re wearing help you see better.”
Perhaps I’m a little obtuse, but it wasn’t until I practiced professionally that it became obvious to me how widespread the stigma concept was, and how it was being reinforced by many in the hearing aid industry. Some companies would advertize that information about their hearing aids would be sent to responders in a “plain brown envelope,” so that no one need know that they had a hearing loss (presumably their family and neighbors, as if they already didn’t know!). Indeed a major advertizing theme of those body worn hearing aids was how inconspicuous they were! (One even advertized that it could be hidden in a woman’s hair). In this respect, except for some current notable exceptions, this basic appeal hasn’t changed much; “invisibility” is still a major focus in hearing aid advertizing but also much more of a reality. Hearing aids can indeed be invisible nowadays. But the problem with extolling this possibility is that it simply reinforces the notion that one has some sort of shameful condition that has to be hidden. In other words, the message being conveyed is that the hearing loss itself is a stigma, no matter how invisible the hearing aid.
This message possibly explains why denial is so common among prospective hearing aid candidates. It takes an average of about seven years after a hearing loss is noticeable (and presumably needed) for hard of hearing adults to start wearing hearing aids. It evidently takes that long before the hearing difficulties they experience are sufficient to override their feelings of being stigmatized by the hearing loss. There is no doubt that the invisibility appeal is effective with many people and has convinced some to purchase hearing aids, something they otherwise would not have done. And if that is what it takes to induce someone to use hearing aids, then I’m all for it. But it is also possible that the invisibility appeal, by reinforcing the notion of stigma, has discouraged as many people as it has convinced. Perhaps this is one reason why only 25% of people who can use aids actually purchase them. There are still lots of potential hearing aid users out there.
It is a fact that hearing loss is most common in older folks, and that most hearing aid wearers are older people. One common reason why people reject hearing aids, or insist on one that is virtually invisible, is the fear that a visible hearing may signal to others (and to themselves) that they’re getting “old” or are old. As if age in itself was a stigma, i.e. a mark of “shame” or “personal disgrace” that must be denied at all costs. No one wants to get old (but what’s the alternative?) or appear old, but rejecting a hearing aid, visible or invisible, is no way to recapture one’s youth. As a matter of fact, well fitted hearing aids, because of the way they will improve communication efficiency, can help one function in an apparently more youthful manner.
The effect of a hearing aid on stigma perceptions started being formally investigated about thirty-five years ago. At that time, Audiologists began studying what they termed “The Hearing Effect,” questioning whether the presence of a visible hearing aid affected how people perceived hearing aid users. Generally, it was found that people wearing hearing aids were viewed in a more negative light than those who did not use them, particularly affecting such attributes as achievement, sociability, and appearance. However, these studies were done by showing pictures of people with and without hearing aids. The point was then made that any negative effect was meaningful only to the extent that it was so perceived by the hearing aid user, and not by an observer looking at pictures. When this was done, it was found that many of the concerns that people had prior to wearing hearing aids were alleviated after the aids were actually used. What I found particularly interesting about this study was that prior to hearing aid usage, only 26% of the observers felt that wearing an aid would make the person look older (which was less that had been feared) and that this was further reduced to 11% after the aid was actually being used. Thus, it seems that the actual use of a hearing aid reduces the negative judgment associated with hearing aid usage. In other words, “Try it, you’ll like it!”
We know one way of dealing with the negative perceptions that actually works, and maybe we should be doing more of this: In l984, when President Ronald Reagan began wearing a visible hearing aid, hearing aid sales soared. For better or worse, people are influenced by the behavior and appearance of the celebrities in our society. Recently, I saw a picture of New York mayor Michael Bloomberg with a visible hearing aid in his ear. And of course, there’s Rush Limbaugh on TV with his very visible cochlear implant. Now whatever we may think of these gentlemen, we can agree that neither of them apparently suffer from a lack of self-esteem. As far as they’re concerned, what stigma? So the more some our celebrities and politicians stop cupping their hands behind their ears and start wearing hearing aids, the better for all of us.
To end on a hopeful note, it does seem to me that the situation is improving somewhat. In the last few years, a number hearing aid companies, in addition to marketing “invisibility,” are also proclaiming the attractiveness of their hearing aids. Virtually all manufacturers now market non-traditional devices, perhaps as some sort of fashion accessory. Besides their acoustical performance, the advertizing emphasis in this line of hearing aids is on their sleek new design and their esthetic qualities. Visibility, for this line of aids, is not a negative quality. Perhaps, soon, we’ll be able to retire the term “stigma” from our vocabulary as it applies to a hearing loss and hearing aids. And as hearing aids are adopted by more and more of the people who need them, perhaps their ubiquitous presence will then help us bury the stigma concept for good.