"You're different because one or more of your physical attributes doesn't work properly, and that difference makes me uncomfortable but intrigues me at the same time" (prime perception of mainstream society, see The Cinema of Isolation, p. xii).
I would not go as far as attributing negative experience with other people to causes such as stigmatization and demonization each and every time. That itself would mean to somewhat demonize others. We are all different and not everyone has a great day always.
Yet there is little left to guess in a recent 2009 campaign of the Fondation de la Haute Horlogerie. There I feel that we are very clearly equated with fake watches and fake people. Yet, the question of authenticity is a serious issue not just in prosthetics but in society. What is it that we see as 'real'?
On the other hand, no other person that looks at me as disabled person would ever admit to stigmatizing or demonizing me because of visible disability. Yet, it is undeniably one of the bigger factors that may affect a non-disabled person and at the same time mostly outside of reach as this is a matter located anywhere but even remotely close to an acceptable dinner table subject.
And particularly initially - but also for some people still after two decades of being an amputee - the stigmatization and demonization by the public has something deeply terrorizing and intimidating about it. It is worth dedicating some time to this subject before starting to talk back.
Example: I regularly attend a swimming pool, and there, I participate in a club training. A while back, a well educated lady who also is a member of that club told me she could not swim there any more. She said it would deeply depress her to see "someone like me" swim so much faster than her. I then took that as a compliment and asked her whether she considered that I had been even faster when I had two hands and whether she was not at all depressed by the presence of such two handed and even faster swimmers in our club? - She did not come back to club trainings. Seeing a person with a visible disability outperform her was far more threatening than being outperformed even more by non-disabled swimmers. So, there appears to be a threat that makes people go out of their way.
Ultimately we will have to look at design principles from their social meaning. For that, both sociology of disability and design principles are relevant areas of observation.
The Uncanny Valley
A 2005 article (macdorman2005uncannyvalley) highlights a correlation between android resemblance (x-axis) and dependent emotionally positive response or 'familiarity' (y-axis). Before you think this is only a theoretical subject - no, after considering Red as the best color to start with, I played with that with my Red Hand project which now escalates to other appearances. Roboticists also played with it, they really did.
There have been attempts by robotics industry or research representatives to seriously downplay this effect. Those must be similar people to those that believe that lifelike human skin simulation is the way to go for prostheses to work for amputees. Now, the Uncanny Valley explanation requires emotions to normally and fully function in order to work as explanation.
And with all due respect I have to add that some peculiar weighting - be it geekness, nerdness or other - could be in the way here. When the emotional animals in my immediate surrounding including my own emotions produce violent negative reactions to a number (not just one) appearances located along the curve region (see following picture) that is indicated with 'prosthetic hands', and if a number (not just one) of appearances that relate to the curve region of 'humanoid robot' (see following curve yet again) causes a number (not just one) person to immediately produce a great display of joyous affection, I have a very hard time trying to believe that the Uncanny Curve ain't working. This model is definitely in place here.
Conversely, I find that people not relating to a normal Uncanny Curve may have a perception that is off. Those be people that tend to label events, associations, feelings, meanings and significances seriously differently than I would. There are a number of reasons why that may be but most importantly, their view will not be relevant to my and our reality.
According to this theory, both static appearance and even more importantly rigid or distorted motion will cause an observer to experience a negative gut reaction if the object not quite but almost resembles a human. If the object is far less human - such as a stuffed animal - then reactions that an observer experiences are positive.
Explanations for that include fear of death.
If you see my prosthetic plastic hand, it may subconsciously turn on your gut reflex 'hand of dead body'. And then it may not - it may just turn on your "oh, a plastic hand" reflex.
However there is a certain chance that it will make you feel fear, horrer, terror - unless you are able to process these perceptions otherwise. If you see my arm stump, loss stares you directly into your face. Fear of loss or death then will cause the observer to unwillingly resort to powerful defense mechanisms: more conscious 'proximal' defense includes self-distraction, denial and rationalization; more unconscious 'distal' defenses include a sudden preference for people that support one's own world view, a sudden preference of group enforcing opinions such as 'nationalist' views, a disfavor for threats of one's own world view and the negative connotation of criticism, critical essays, or what are perceived as moral transgressors.
The wicked thing about it is that a disabled person's 'android' / 'human-like' appearance risks to elicit the stronger distal defense mechanisms - not only are they unconscious, they are deviously non-obvious. And they are much harder to deal with upon direct encounter - particularly as one-on-one encounters with a physically disabled person invariably requires the ample use of respect, critical appraisal and reevaluation of norms if it is at all to succeed.
I hear so much really naive rewind-play-type 'amputee fiction' - "does phantom pain bother you a lot", "are you happy now", "so what all does the prosthesis do" - that invariably I get bored (whereas you find it interesting), when I get irritated (whereas you think you are being polite) and so, defense mechanisms really can get into the way.
However, it is important to realize that an observer's initial and somewhat regressive tendencies can be caught and possibly stabilized at least temporarily by attempting to 'encourage the observer's own group based identification' and somewhat reduce the impact of the fear of death perception.
Tension and stereotypes
Invariably in situations of social encounters, there will be tension. People you meet will try to master their feelings. However, they are not aware of what is happening with them and so they will attempt or reduce the distressing impact. Some resort to not looking at the disability (which is hard because it is my right arm), other resort to avoiding me (comparatively easy) and yet others manage to come up with questions that bug them (which is quite alright as I'd expect that). But what could be happening? What could be going on?
Operative as initial problem seem to be these two crucial elements:
- Reality A (of a non-disabled person) and reality B (of a disabled person) differ significantly. That difference should be subject of conversation just as much as a foreigner and a local person would have a lot to talk about. However, there is a major road block that may obstruct this conversation.
- Assumptions of a non-disabled person about reality B may vary significantly from reality B. While that is not only nebulous to the non-disabled person it is also widely perceived as tagged with the taboo-label. This is probably because differences in reality touch on private and intimate subjects. Also, talking about limb loss and illness may cause serious discomfort such as fear of their own death on other people.
As a non-disabled person may quickly be overwhelmed by the complex situation.
Our societal standards provides for a rather quick solution to such situations: if an individual is not easily integrated into one's own personal narrative of social interaction, one tends to employ the standard procedure of demonization. In other words, a non-disabled person will find it much easier to work towards finding apparently acceptable reasons for not having to interact with that disabled person than to figure out a way to untether their own issues. Thus, disabled people are demonized. While it is really cheap and affordable to demonize an individual, it is commonly accepted as quite entertaining to watch the results - as demonized individuals will invariably react to this. Stereotyping disabled or otherwise stigmatized people as evil, as menace to society, as villains, as frustrated, as helpless screw-ups and the like is a practice still employed today (recent example: the movie Hancock (2008) by Peter Berg and Sony Pictures).
Conversely, people that grew up surrounded by some socially integrated illness, disability and related physical decay (such as myself) may be less affected by such tricks an unprepared mind can play on a person. Modern society particularly in Switzerland does not have an adequate social discourse about how to productively deal with such situations.
The post-traumatic culture related to limb loss in Switzerland can safely be called somewhat hysterical - at least on average and also in relation to my personal experience. Purely theoretically, inexperienced surgeons may be very reluctant to carry out amputations and at best achive only mediocre results. I had one doctor tell me, he'd have no technical problems with one particular type of radical operation since he had assisted in such an operation once (Assisted. Once. No problems. Alright!) but he later refused to carry it out without clear reason. The result would then be a societal perception of limb loss as unacceptable or even catastrophical and there are indeed people in Switzerland that may seek to end their lives before they would allow a surgeon to save their lives through amputation. Conversely, when I told doctors here in Switzerland that I defined myself over other aspects of myself than diseased anatomy - being awake and being pain free, not necessarily containing two hands - they did not understand at all. They were more upset about that than me despite not having any other effective treatment. They would be regarding loss of job and income due to pain killer addiction as far more normal than adequate surgery that would fix the pain problem once and for all. This amputation is most definitely one of the bigger buses that ever rammed me - but as opposed to intractable pain, this can be dealt with, processed, accepted and gotten over and done with. Post-traumatic culture as here in Switzerland may then turn a significant but (in the grand scheme of things) relatively minor handicap out of all proportions - and one then realizes that hysterical initial reactions of other people are far more of an issue than the functional absence of an anatomical limb. So what may non-disabled people be upset about?
In each given instance, I frankly do not know. But I found that it does pay to know the standard elements, factors that were found to affect study subjects, it pays to know what was written about the subject of how visible physical disability could become transformed into disruption of social interaction. It pays to understand how vilification or demonizing may be used and what persons may be particularly affected by it. I would state off the record that losing a hand ends up as a disability that has effects which are to a percentage of about 5% functional or practical, and to 95% social. So the impact on my life is not nearly as much a functional or practical one as much as it is a social one.
People that may be predisposed to particularly fast demonizing of disabled may include the following:
- Media workers. Media always entertained the mechanism of demonizing fairly rapidly. They do it for two reasons: most people with limited education demonize fairly rapidly and media need to cater to that as they sell or transmit content by volume for a living, and secondly, they do it for pure entertainment. Media workers typically adopt their industry's attitude. On top of that, their job is to dramatize, not to de-dramatize. So any stereotypical perception is likely to get rather quickly blown out of any proportion by media workers.
- Doctors and health care workers. Sometimes, people in such jobs live with an "us versus the patients" dichotomy of the world which they see necessary to delineate between themselves and possible threats to their selves. Also, they may lack experience in many aspects of complex modern medicine except their own field - and not knowing about rehabilitation, disability and orthopedic technical services may come across as uneducated to some that don't know that this would actually be normal. So if they see someone who clearly should belong into the "patients" category they may be confronted with unpleasant feelings of lacking experience, self-inflicted expectations ("I should know about such people" and "I should be carrying myself professionally now") or blurred categories ("how can someone be part of that other category but still have a normal chat with me"). Besides, there are people in health care that feel they should help. But a disabled person cannot be helped, particularly not immediately - they must be tolerated, a tee-totally different thing. Even severe chronic pain that is non-responsive to medication may cause health care specialists that expect themselves to provide "help" to really suffer. So chats with people of that background carry a moderate risk of feeling quite uneasy.
- People who define themselves over external appearances. If someone relies on external appearances for their own self definition, damaged appearances may pose a real threat and cause intense fear. Imagine a person who places extreme emphasis on external appearance may do so because they believe everyone will judge them on basis of their looks - and if these looks are damaged, such as by being accompanied by a visibly disabled person, their self risks to crumble.
- People with limited capacity to disambiguate complex social situations. As visible disability challenges that very capacity, you may find that people that are challenged in this domain of themselves will rather quickly resort to demonizing. Conversely, if someone who you did not believe would to that starts to show inappropriately demonizing attributions of you, consider them to maybe part of such a group of people.
- People with psychiatric disorders. If a workmate of yours suffers from, say, narcissistic personality disorder, borderline personality disorder or histrionic personality disorder, he may have that under control for the most part and for most situations particularly if he is well educated and halfways aware of what is going on. But mind you, visible disabilities present situations that are difficult to deal with even for healthy people. So he may start to feel the very thin ice of his social stability being threatened by his own ideations of your disability and dig up the weirdest fears or projections. He then may go into aggressive overdrive and try to convince everyone of things no one even asked in the first place. That then may cause others to see through the thin ice of his personality - and all of a sudden, he may find that things have become harder for himself. In a sense, productively dealing with disability of a coworker can be more important for such a person themselves than they'd ever realize. Confronted with a visible disability, some people may lose control over the outer appearance of their own self faster and more thoroughly than anyone would expect.
Our patience with forming interpretations and reinterpretations of others behavior is not unlimited. The time comes when we lose interest in trying to understand, and conclude that another person is behaving in a way that is simply unacceptable. We will now take time for a reflexive comment on the difficulty of analyzing such a topic, on the grounds that the phenomenon under discussion can debilitate analytic writing. A narrative construction of how sense is made of indignation, particularly in cases where two narratives come up against each other. We will consider how the process of being indignant can produce conflicting emotions of joy and guilt for those involved.
Where Narratives Meet
As people go about living their narratives, they write themselves into others stories. Most of the things which drive people in terms of ambition are to do with writing oneself into a more significant role in other peoples stories.
The ambition to be more senior in an organization may have a lot to do with the desire to write oneself into others stories. Of course there is extra money and different work content, but often not enough to explain why people are ambitious for seniority. This is particularly obvious in academic life, certainly in the UK, as well as iin volunteer organisations such as Mensa, where the extra money that goes with senior positions is trivial compared with what could be amassed by any other activity such as private practice or working at MacDonalds.
Status is not a sufficient explanation in itself, except as a proxy for the fact that with more status people believe they can write themselves more effectively into others stories. With more seniority generally they hope that they will be able to enter those stories in some way that they are happy with.
But with some people it is very difficult to know how to enter their stories. If someone behaves in a way which seems unpredictable, which is difficult to make sense of, how can another person write themselves into that story? They are unsure of what their character (in the novelists sense) is, of how they will respond, and they are therefore unsure how to write themselves into the other persons story.
Some level of trust is required for many kinds of narrative presence, where trust may for this purpose be defined as feeling that you know how the other person will respond in their character. If there is not that sense of trust, they may be emplotted in a character where unpredictability or unreliability are built in. For example, they may be emplotted as a bastard. This imposes its own kind of predictability and reliability by acknowledging that this person is not trustworthy. If a person feels compelled to emplot someone else as a bastard, the cast of characters open to the person in the interaction is correspondingly influenced. They may choose to emplot themselves as the missionary, saving the soul of the other by converting them from their wicked ways, but my own participant in organizations has found relatively few accounts or examples of this. This most fundamental kind of staff development is no doubt being carried on or at least attempted by some in organizations.
However, it is not currently a fashionable way to tell the story, so even if there are people who believe they are converting others around them to better ways, they are not usually offering this discourse. Indignation is not predominantly dealt with by attempting to improve the moral behaviour of the target of the indignation. The one exception I have come across was someone who was the subject of many stories from colleagues, in which he was described as bringing out the best in others, and someone whose presence makes it easier to do the right thing.
The Joy of Demonizing
Indignation can feel good. It is a very certain emotion, an emotion in which we know who we are, and know that we are right. It places us clearly in the world, and also places the other character(s). As one of the participants in Sims and Lee (1993) put it, sometimes it can be a pleasure to sack someone, if you are sure you are doing the right thing.
The action could make you feel all of a piece. It is continuously alleged that indignation sells newspapers. British tabloid newspapers carry many stories in which horror is expressed at someones disgusting behavior. Trials of murderers and rapists are covered in what is overall a very morally ambivalent way, but with a clear intent to express feelings of indignation, and then an invitation to readers to join in these feelings against the perpetrator. The moral ambiguity arises from the salacious entertainment being offered at the same time, with accounts of the crime which are aimed to titillate in the same way as violent films. This process has been described as loving the sin while hating the sinner.
Television pictures of the same trials show that there is usually a crowd outside the courtroom, hurling abuse and anything else that comes to hand at the accused. The police often have to protect those accused of the crimes that attract such indignation from the public. The angry members of the public are not the relatives of the victim, who are shown in a different television shot, but some presumably unconnected collection of the indignant whose stories for themselves of their own lives may have them guarding good against evil by going and expressing their rage.
They are not alone. The experience of fury while watching or reading serious news reports of the actions of whoever is considered to be a bastard is very widespread. People who consider themselves normal and balanced will sit down deliberately to watch or read such reports, about events which are outside their sphere of influence, and will knowingly put themselves in a position where they feel full of indignation. Why? A full answer to that question is outside this study. But it is clear that a discourse of moral indignation is sought by many people, and they will put themselves in the way of experiences which fuel that indignation. There is a warm glow to be had in knowing that someone can be looked down on as a bastard.
The Guilt of Demonizing
On the other hand, as said earlier, there is an opposite side to this. There is a discomfort involved in demonizing. I have demonized the demonizers above, and many people seem to be happy to show their disapproval of the salacious use of moral indignation to buy a cheap feeling of superiority. Tabloid reporters of crimes, and indeed those who read their papers, are not the company they would wish to be seen in. They are, in their own view, too mature and balanced to be whole-heartedly part of a group which they see as self-righteous bastards. People therefore erect their own platform from which to tell the difference between legitimate and illegitimate indignation.
The voice of indignation is carefully modulated to bring a tone of exasperation which suggests that everything has been done to see the other point of view, but in the end there was simply not enough good in that other view. This is the discourse of liberal reason, when it explains that it has done all that is possible to comprehend the point of view of the other, but there was nothing coherent or reasonable to comprehend. This is one of the oldest tricks in the demonizing book. It depends once again on narrative, in that the story being conveyed is that the person making the judgment is totally reasonable and has sought hard for an alternative way of construing the other.
However, many never feel comfortable with this activity. Arguably this may be because they feel that it is too self-indulgent, that it constitutes too great an evasion of moral responsibility, and that the only demon who could make them so indignant is one that they know well from within.
The relational side (Wortham 1999) of demonizing is always ambiguous. The clarity of emplotting someone in a clear, negative way may be satisfying as a representation, but does that story about the other person satisfy interactional purposes with an audience? Is demonizing an acceptable form of discourse in that group? Is it one of those activities which is made more exciting by being on the edge of being acceptable? If so, then the joy and guilt of demonizing are one, and together form a piquant sauce which organizational members are not likely to give up.
We argue that the experience of indignation, of dismissing someone in the organization as a bastard, can be understood by considering how organization members emplot themselves in narrative. Even those who are predisposed to understand that others behavior may need careful interpretation before attributing a motive or a moral category experience a visceral reaction of indignation to some of their colleagues.
This can be because they can find no way of making sense for themselves of why those others are behaving as they are. Furthermore, they may become all the more indignant because they are uncomfortable with acting in such a demonizing way. Demonizing may both be a relief because at least they now have a way of understanding the other, and yet still bring guilt because it leaves them with a discourse which sounds unsatisfactory both to them and to others.
 David Sims (2005) You Bastard: A Narrative Exploration of the Experience of Indignation within Organizations. Organization Studies Online First ISSN 01708406 Copyright © 2005 SAGE Publications (London, Thousand Oaks, CA & New Delhi)
Stigma: Notes on the Management of Spoiled Identity, by Erving Goffman
Stigma: Notes on the Management of Spoiled Identity is THE seminal text on stigma and social identity. It contains an illuminating excursion into the situation of persons who are unable to conform to standards that society calls normal. Disqualified from full social acceptance, they are stigmatized individuals. Physically deformed people, ex-mental patients, drug addicts, prostitutes, or those ostracized for other reasons must constantly strive to adjust to their precarious social identities. Their image of themselves must daily confront and be affronted by the image which others reflect back to them. Read this and you will discover what it means to be stigmatized.
Drawing extensively on autobiographies and case studies, sociologist Erving Goffman analyzes the stigmatized person's feelings about himself and his relationship to "normals". He explores the variety of strategies stigmatized individuals employ to deal with the rejection of others, and the complex sorts of information about themselves they project. In Stigma the interplay of alternatives the stigmatized individual must face every day is brilliantly examined by one of America's leading social analysts.
Attitudes and behavior towards disabled people, by Guenther Cloerkes
Further content (will add that later): point by point summary and discussion.
Further content (will add that later):
Limb loss and quality of life
Disclaimer: Even though I am commenting and citing studies here, this is a post of the type personal rant and rave. Do not attribute professionalism to it.