Geo F. Mason: THE HEPHAESTUS PHENOMENON
(An essay on the psychology of rehabilitation)[1]
There are two
symbols which can be said to embody nearly the whole of psychology of
disability: one is the figure of Hephaestus and the other leprosy. Each
emphasizes a different aspect of the question at issue. Let us begin with the
latter.
LEPROSY AS A
SYMBOL
In a documentary
novel on rehabilitation (Take my Hands,
The Remarkable Story of Dr. Mary Verghese) set in
India in the sixties, in which Dorothy C. Wilson tells the story of the
struggles of a female surgeon paralysed from the
waist down in a serious bus accident, one of the figures is a leper who has to
live excluded from society until the disease is no longer active. Then Dr. Verghese carries
out an operation on a tendon in the leper’s hand, which had been damaged by the
disease, thus restoring its use by means of a special procedure. Hope for full
recovery and reintegration into society are quite high. However, the leper
remains an outcast for life. The patient, fully
recovered after the successful operation returns to his doctor in the hospital
and says in bitterness and desperation: “You have done a bad job, Doctor,
because I still can’t use my hand for
work, but can no longer use it to
beg.” Although people knew that he had recovered, it was to no avail since he
still bore the indelible traces of the dreaded disease on his body (he had no
eyebrows, etc.). This case too shows that medical rehabilitation in and of its
own is worth nothing without the rest: social and occupational rehabilitation -
cf. anti-discrimination legislation.
The leper is the symbol of rejected
persons, entirely alone with their problems. This is why they have become the
focus of the attention of Michel Foucault, one of the most outstanding social
scientists of the 20th century. In one of his seminal works, cited earlier, he
expressed the problem in the following terms: “... the values and images
attached to the person of the leper continue to exist and persist in an age
when the leprosy hospitals have been empty for years; and
the exclusion has remained, and the stubborn and fearful symbol, which can only
be kept away by drawing a sanctified circle around it, has not lost its
importance in the society.”
Other authors refer to the long road
traveled by our science and everyday practice from Taigetos
up to the present day and the modern attitude and practice of rehabilitation.
However, there is no place for complacency: the practice of Taigetos
has not ended and has certainly not disappeared without a trace. Whether in faint traces or quite manifestly, the much condemned
Greek tradition has continued to haunt human history over the centuries.
Moreover, since the 17th century it has been present in European culture in
clearly visible, institutional forms - embodied in the closed institutions. (We
must be perfectly clear about this. What was wonderful and revolutionary in its
novelty in the time of Guggenbühl, despite its
methods and installations since developed to perfection has now become irrevocably
harmful and retrograde.) Yet, even this is not enough. Would there be a need to
emphasise the special attitude of modern
rehabilitation, for a movement aimed at achieving an independent life for persons
with physical disabilities, or even simply for investigations in this direction
if exclusion, confinement, rejection, segregation, in short, seriously unfavourable discrimination and stigmatisation
were not an integral part of everyday life in modern societies? Taigetos has not ended. It lives on in the reactions of the
parents of children born with disabilities, in the conflicts of these children,
in the mockery they all suffer, in the failure to accept their otherness, in
the prejudices and the stigma with which they are branded.
Umberto Eco discusses the phenomenon
in a striking way in The Name of the Rose:
“The lepers are a sign of exclusion in general... We were talking of those
excluded from the flock of sheep. For centuries, as pope and emperor tore each
other apart in their quarrels over power, the excluded went on living on the
fringe, like lepers, of whom true lepers are only the illustration ordained by
God to make us understand this wondrous parable, so that in saying ‘lepers’ we
would understand ‘outcast, poor, simple, excluded, uprooted from the
countryside, humiliated in the cities.’ But we did not understand; the
mystery of leprosy has continued to haunt us because we have not recognized the
nature of the sign.”
HEPHAESTUS AND
MR. DAVIS: PAST AND PRESENT
Although the
symbol of the leper could be analysed in much greater
detail, let us return to the hero we have already encountered in our wandering
through history: the Greek smith! The lame Greek smith-god, Hephaestus, began
life rejected by his mother who even cast him down from
“Father Zeus and you
other happy gods who live for ever, come here and see a comic and cruel thing.
Zeus’ Daughter Aphrodite has always despised me for my lameness, and now she
has given her heart to this butcher, Ares, just because he is good-looking and
sound of limb, while I was born a cripple. And whom
have I to blame for that, if not my father and my mother? I wish they had never
begotten me!”
Life and self-acceptance of people
who are not born this way but become disabled later in life is similarly
fraught with conflict. The confidence of the persons with disabilities can be
broken. They might lose their self-confidence, their security is jeopardised, they might feel as if they are both a burden
and defenseless. They have phantom sensations and in some cases
an unjustified fear of death. For an extended period and sometimes even to the
end of their lives their everyday life is marked by mourning: they mourn their
former self and the capabilities they have perhaps lost for ever. The most
widely varied abnormal psychological reactions can arise or be strengthened:
over-sensitivity, hypochondria, products of an overactive imagination, over
evaluation of the competence and possibilities of specialists providing
assistance, an expectation of miracles and aggression.
The self-image also undergoes change frequently. What will be the
self-evaluation and definition of persons who yesterday were still themselves
and for their environment were healthy, strong, attractive, capable of
persistent and hard work, independent and active, yet are now no longer any of
these? The situation is further aggravated in a society such as modern society
where physical beauty and health are very highly valued properties,
persons with disabilities can easily think that they are less valuable than the
others. This is why, although each level of rehabilitation has its own specific
psychological problems, we consequently come up against inadequacies of personal
self-evaluation. If someone has been carrying out a particular function or
playing a role more or less effectively, in the great majority of cases this
situation will change following injury. Even if the person has never before
asked themselves “What am I good for?” or “Am I a valuable person?” they almost
certainly will now. They will generally find themselves wanting.
Our example also gives a
cross-section of emotional rehabilitation. “Who am I? One thing is certain: I
have changed. I have become different from what I was. I will never again be
able to do what I would like. I have become unproductive and useless, a burden
on others, and I will stay that way. I was perhaps never attractive, but now I
am definitely ugly. I repel people, no one loves me, how could they? Nothing
will ever again be what it has been up to now. My family and friends have
become different too, they will leave me. The world has changed too. I have
lost all hope. What am I worth like this, a cripple? The whole thing is terrible,
unbearable. I sometimes think it would be better if I were to die.”
This train of thought is familiar
and it is not easy to find a chink in it. However, this is nevertheless the
duty of rehabilitation. This needs the conviction
of defiance. As it is difficult to refute the bitter
words: the conclusions drawn from them appear to be logically unassailable.
Nevertheless, since in reality there are very few truly hopeless situations, it
is possible to help in most cases.
Not with lies and by painting a rosy picture of the future, but with a positive
assessment and precise evaluation of the situation. The primary aim of the
therapy is to change the negative self-definition into a positive one. This
starting point can be followed by the development of capabilities and different
forms of activity. The great possibilities inherent in celebration and play
must be emphasised here.
The task is thus to bring the person
to think differently: “It is true that I have become different from what I was.
But as far as the essence is concerned, I am still what I was. The world may
appear to be all mixed up now, but it hasn’t changed after all, I only feel
that it has. But I didn’t see that earlier and I behaved childishly. So I have
to face it and myself. That is the way it should be: I have to accept myself
for what I am. I still have my friends, although there are some things we are
no longer able to do the way we used to. My family still loves me the same way.
That gives me a reason to face the big questions such as what I will do in the
future, how I will live, whether I will be able to work and, if so, what.”
Quite often modification of the
self-image is caused by a change in the body-image,
especially in the case of persons who lose a part of their body or an organ as a
result of an accident or operation. It can even happen
that fear of a change in the body-image and self-image sets a limit to an operation
preceding successful rehabilitation, making the whole process impossible. Our
example promised earlier is the case of Mr. Davis. He was a black man aged 55,
the father of three children who were around twenty. He had a good relationship
with his wife, but one day he was found to have cancer of the testes. His doctor recommended
various therapies, but especially drew his attention to the surgical removal of
the testes, which in his experience offered the best hopes of survival and in
this case would probably bring complete recovery. But he also told his patient
that he would become impotent as a consequence of the operation. However, his
sexual relations with his wife were very important to Mr. Davis. His manhood
was an integral part of his body-image and his self-image. The doctor insisted
on the need for the operation in vain. “I’m not going to let any surgeon cut
out my balls!” exclaimed Mr. Davis, and left the hospital. Without treatment he
died six months later. (Example given by Earl E. Shelp)
When discussing the case of Mr.
Davis, whom I never met personally, it would be difficult not to mention the
legendary figure in the battle against cancer in
Numerous other elements in the
prevailing social values raise further difficulties. It is not only the
aesthetic values that have influence, but also such categories as status which
is determined by income, financial independence, the possibility and capability
of creation, the prestige of the occupation. All these factors strongly
influence the individual’s self-esteem and self-acceptance.
One of the fundamental aims of
rehabilitation is to bring the person in need of rehabilitation - the client -
to recognise and help him to build fundamental life
values supporting a balanced and certainly not a destructive self-image. Recent
literature on rehabilitation regards development of the inner life and internal
resources as being particularly important, and stresses the exceptional
significance of the attitude and life philosophy that makes the person capable
of answering the most difficult questions and leads him to live what must be
lived.
The success of rehabilitation
depends to a great extent on the attitude of a person with a disability towards
rehabilitation efforts. People react to the situation in many different ways:
some people would like to adapt to their disability, accept it and try to live
with it. They are full of hope. The behaviour of
others is determined by their old lives and old experiences: they are incapable
of adapting to their changed situation. They are constantly frustrated by their
limited capabilities and narrower horizons, they regard their new situation as
their own personal misfortune and are incapable of coming to terms with it; many
people lose hope. In these cases, a strong self-centeredness and selfishness
may also be typical and personality disorders can often be observed as well.
It is no wonder that this is so.
Serious disability often places people in a seemingly impossible predicament.
Not everyone, not all family members or relatives have answers, for example,
when close relatives begin to talk about our now permanent invalidity the
feeling of being entirely superfluous and that “death would be better!” If
someone has closed their mind, has become apathetic and has no motivation, if they no longer expect
anything of life or are no longer capable of fighting for it, then no matter
how developed and expert rehabilitation may be, it stands no chance of
succeeding. Marriages fall apart in an instant when trouble strikes. Couples
often feel there were already abundant reason for
separating, but they had been putting it off, perhaps out of habit. Now they
just cannot carry on any longer. (“At least you could have broken your neck properly when you fell off that cart
dead drunk! How will I be able to nurse you and look after you, if you are as
helpless as a baby?” - says the wife and has already brought another man into
the house.)
How important continuous motivation
is: a helping environment, constant enquiry, calling to account! The still
recuperating, recently persons with disabilities need to feel that those around
them expect them to make every effort to improve their condition. Family and
friends can help by giving meaning to a disrupted life. There is also a danger:
the limiting environment, the mother raising a young person with a disability, but
becoming too sheltering, impeding and restricting the child, the repressive
father or paternal, authoritarian specialists.
The change that frequently occurs in
the attitude towards work is also a well-known phenomenon. If occupational
rehabilitation is considered to be a valuable thing for restoring the
individual’s self-esteem, for productivity and earning an income, it may seem
surprising upon first glance, when one encounters the fact reported in the
international literature and also experienced by a small co-operative in
Hungary employing workers with disabilities: after spending a certain period of
time without work individuals with disabilities lose their affinity for work
and it is then only with great difficulty that it can once again be made a part
of their life. Nevertheless, all persons with disabilities, just like “normal”
ones, feel the need to belong somewhere, for self-fulfillment, to do creative
work, for a secure and stable life, to be appreciated. Self-acceptance often
arises from the feeling that “I can do it myself” and the security this gives:
“I don’t need the help of others, I am capable of
doing it alone”.
MECHANISMS OF
EXCLUSION: STIGMA AND PREJUDICE
The stigma
The situation of
Hephaestus is perfect from the viewpoint of occupational rehabilitation: he
makes incomparable creations that are used by the gods and people come from far
and wide to admire them. Despite this, he is different from his fellows.
Reading the stories about him, we cannot fail to notice that he is very
different from the other gods, not only in his external appearance but also in
his inner qualities. His disability is stamped on him: he is stigmatised. Ever since the time of the ancient Greeks, the
word stigma has been used in various
senses - sign, mark, stamp, distinguishing sign (a Catholic may even speak of
“receiving the stigmata”). In 1963 Erving Goffmann introduced a definition which serves very
effectively as an explanation for the theory of rehabilitation and is highly
instructive: it characterises a human life situation
which is for the most part undesirable and which is often definitely
discrediting in the eyes of others. There are three different types of stigma:
physical disabilities;
distortions and shortcomings of character; and
racial, national and religious identity. It is worth paying close attention
here to the characteristics of the first type, although it is of considerable
interest to point out the parallels that can be drawn with the other two and
especially with the third type. This is because stigma and prejudice (see
later) often go together. Prejudices against the stigmatised
person develop and are reproduced relatively simply. It is characteristic that
“normal” people generally do not regard the stigmatised
person as being equal in value to themselves. They use
terms in connection with him, without being aware of their meaning or origin -
“sightless”, “cripple”, “idiot” - and in addition, in many cases the stigma is
used as a name to identify a person with a disability.
Without hesitation, other forms of
mental, sensory or other disability that also lead to the serious or even total
disability already mentioned can be added to those physical disabilities
mentioned by Goffmann. It is not only the clearly
visible disabilities that can lead to a person becoming stigmatised.
The second type clearly indicates this. Even if the situation of a person with
cancer differs the average in that it is not clearly visible, the individual
living with a disability becomes stigmatised for himself and others, assuming, of course, that the disability
has been recognised. And since man lives in society,
his reputation precedes him, the members of the community discuss him among
themselves and whisper behind his back: “Look, here comes that ...” Thus, the
essence of the stigma is not that it is visible, but that it is indelible: the
individual wears it not reluctantly, like old clothes, but like his skin - he
is unable to cast it off. The blind person can throw away one stigma, the white
cane, but this will place their life in danger. The slave or draught animal
marked, branded bears the sign burnt into their skin till the end of life, just
like the prisoners freed from the scandal
of humanity, the immeasurable sufferings of
Hephaestus says that his beautiful
wife deceived him with the god of war because
his rival is handsome, while he - in his own words - is a cripple. Stigmatised persons often draw advantage from their stigma,
using it to justify their lack of success and failures. As Goffman
put it, the stigma is a “hook” on which the bearer can “hang” their shortcomings,
failures and dissatisfactions and so escape from them.
Strangers often consider that the stigmatised person with a disability can be approached at
their will, that they can take liberties provided they show sympathy for the stigmatised and others in a similar situation: “My mother
has the same prosthesis too, so I think I know all about your difficulties”;
“Tell me, how can you go to bed with your prosthesis?”
It is of fundamental importance from
the viewpoint of management psychology, management science and the psychology
of work that a person with a stigma be accepted, received and integrated into
the workplace community. It is worth considering the social psychology
syndromes of vocational rehabilitation and community syndromes, drawing on the basic
study of Nathanson and Lambert.
“You
are marked!” (The practice of labeling.) Labeling people
with disabilities and using said label to refer to them is widespread in
business and enterprise communities. Workers using wheelchairs are referred to
simply as “the man in the wheelchair”, while those with other physical disabilities
are called “invalids” or “cripples”. Others are called simply “the dumb man”,
“the deaf man”, “the blind man”, and so on.
“I feel sorry for you!” Pity
is perhaps the most frequently expressed feeling towards individuals with
disabilities. The person with a disability is made to appear the hopeless
victim of a tragic misfortune. This is dangerous because it represses possible
helping reactions and masks the problems of a colleague with a disability. (It
is the person who feels pity who becomes important, not the other.) “A tragedy! How terrible, I can’t imagine how you can live
like this, my dear! In your place I wouldn’t be able to bear it!”
“Don’t
be afraid, I’ll protect you!” This is typical bad help. The wings spread
out by the “big friend” paternally (or “maternally” - think of the archetype,
power-obsessed Big Nurse in One Flew Over
The Cuckoo’s Nest) have the effect of reducing self-confidence and
increasing dependency. Helen Keller supplements this kind of attitude with experience
taken from her own life: “Nor do I like those who try to descend with their
speech to my ability to understand. They are like those people who try to take
shorter steps when out walking to adapt to you: the hypocrisy is outrageous in
both cases.” But the example she mentions does not quite cover the essence:
authoritarian behaviour manifested towards a person
with a disability. This can be observed on the part of both family and experts.
“You
cause us too many problems!” Rejection based on this argument generally
occurs if there is nothing to protect an individual with a disability applying
for a job. Its basis is generally that all decisions affecting him too “fully
take into account the interests” of a person with a disability. But
nevertheless behind it lies the admitted or unspoken fear of the employer that workers
with disabilities will “impose themselves” on the firm and will demand too much
help and the satisfaction of special personal needs. Such a situation is most
often the consequence of ignorance or misinformation, as a result of which the
workplace community greatly overestimates the costs of employing the worker
with a disability and tends to leave the benefits out of account.
“If
I’m lucky, we won’t meet again!” Disdain and contempt are often found
behind this kind of reception: “I can’t work together with him. I simply can’t
stand the sight of his misfortune! He’s a very nice and a good worker, but it
depresses me to see him. I would prefer to see him transferred somewhere else.”
“Oh,
if only you knew how your strength of mind impresses me!” This is the
expression of exaggerated recognition. Also: “It’s amazing! What obstacles you
overcome! You’re simply fantastic!”
“Well,
who’s more concerned, you or me?” A frequent type
of relationship to a person with a disability is marked by exaggerated caution
and infinite concern.
…and prejudiced behaviour
Our examples
also suggest that the community attitude
to disability is one of the central problems of rehabilitation. For
example, the unfounded fears arising from prejudice, concerning persons with
psychosocial disabilities (Will they attack? Are they really dangerous? Can
they be trusted?) differ from the fears associated
with other disabilities. In themselves, these observations indicate that the
existence of a hierarchical scale of preferences regarding groups of individuals
with disabilities is not out of the question. The Social Distance Scale devised
by E.S. Bogardus in the twenties was often used in
examining attitudes. For example, the prejudices of white and black students
toward each other and other ethnic groups were measured at two universities in
One interesting conclusion reached
by the various investigations conducted on the basis of the scale among
students and teachers at
Similar investigations were made in
Certain jokes illustrate the stigmatising reactions. American researchers analysed 7000 jokes and found that slightly more than 40%
were based on mockery of physical deformities.
In the great majority of cases the
negative discrimination against people in need of rehabilitation has a negative
effect on the psychological state of a person with a disability and also unfavourably influences the process of rehabilitation. Such
discrimination is equally harmful, whether it is the result of negative,
rejecting behaviour on the part of the community, the
employers or the non-disabled colleagues. Foreign experiences - for example in
The American, Nick Palermo, in
exercising his profession lived for many years among children with disabilities.
He summed up his experiences as follows: “In our society and culture physically
handicapped children find themselves faced with an impenetrable wall, built by
the ignorance and misconceptions of healthy children. Although
what physically handicapped children need is to be able to experience human
contact with their healthy fellows.” We know from our everyday
experience that these words apply just as well to European and Hungarian
culture as they do to
The very apt example of Irving Lee (cited by Allport)
also comes from
It can be seen that in the
experience of many different countries there is not only racial discrimination
on the manpower market but also discrimination that is independent of skin colour, arising from visible and invisible disabilities and
is generally not at all justified as regards holding the given job. This was
the case e.g., in the 80-ies in the Federal Republic of Germany and in
A few typical cases that have
occurred in
For decades it has been the practice
once a person has been diagnosed as having cancer, in the great majority of
cases to have them declared disabled and sent into retirement on a disability
pension. This too has fostered the development of negative prejudices towards
such people. A man with a physical disability applied by phone for a sedentary
job advertised in the paper. His application was warmly welcomed and he was
asked to come into the office as soon as possible. When he arrived and they saw
that he was person living with a disability, he was not given the job.
Another example: an economic unit
employing persons with disabilities for various reasons, most of them receiving
disability allowances, found premises in the Inner City with very good access
and a great location. However, a high-ranking official, the deputy chairman of
the City Council at that time, allocated them a place at the edge of the city
with very poor public transport. (“How would it look to have all those disabled
people in the centre of the city?” he asked the organisers
in a tone of sincere surprise.) It is a fact that the limited transport and
livelihood opportunities and the great mass of prejudices force many people
with disabilities to leave the city and move to country towns or isolated
settlements. This is understandable since all the examples cited are quite
clearly negative prejudices. (Of course, numerous interpretations of prejudices
can also be found. For example, according to Gadamer
the notion of prejudice originally did not in itself have a negative emphasis.
It did not mean “false judgement” but something that
could be considered equally as positive or negative. Beyond that, prejudices
are the conditions of understanding. From this point of view, it is of
significance to make a distinction between true prejudices helping
understanding and false prejudices that lead to misunderstanding.)
In his deservedly famous work,
Gordon W. Allport shows prejudiced behaviour through the examples of two main types of
prejudice, the ethnic, for example against whites or blacks, and the religious,
concerning Christians, Jews and Mormons. In places he presents other examples
too, such as those of a political nature, for instance, prejudices against the
“Reds”. But his findings can also be put to good use to interpret prejudice
against individuals with disabilities. At the same time, ethnic prejudice
usually has a negative emotional colouring. There is
a difference between prejudice based on a simple mistake, and real prejudice
because information brought to light is incapable of changing the latter. In
this way the real prejudice existing against persons with disabilities “may
remain at the level of emotions, but it may also be expressed in behaviour. It may be directed at the whole of a group or at
a single individual, on the grounds that the person is a member of the group
concerned.” This means that prejudice is not always translated into action, but
even so, repressed prejudice is still prejudice. Any striking manifestation of
prejudice against persons with disabilities or in the economy against persons
with a work disability is discrimination. Discrimination might be classified into
six types. Namely: psychological discouragement, when the employer is reluctant
to receive the applicant with a work disability;
statistical discrimination, when the employer refers to the empirical data of
earlier statistical surveys in refusing to employ them;
excessive demands; plain discrimination
(cf. point 3 below!);
discrimination justified by social policy (“they have income from other
sources, they are not in real need of a job”); and
discrimination originating from employees, a type which is essentially
equivalent to the type described by Nathanson and
Lambert under the formula “If I’m lucky..” already mentioned here earlier.
Both everyday life and history
provide examples of all the degrees of prejudiced attitudes toward individuals
with disabilities.
1. Verbal prejudice: the form expressed in speech, mainly among
acquaintances, is a relatively mild degree.
2. In the case of avoidance, the prejudiced person does
not come into contact with the persons concerned, even if it causes him inconvenience.
3. Negative discrimination: this is an active, serious form if the persons
affected by prejudice are excluded from employment, settlement or the exercise
of political rights. It was largely against this kind of seriously prejudiced
attitude that the “independent living” movements of individuals with
disabilities and cancer sufferers and the anti-cancer leagues were launched.
4. Use of physical violence (pogroms).
5. Destruction.
The practice of labeling already
mentioned in connection with stigmas and community syndromes is also a form of
prejudice. There are mild and strong labels and others that are of overwhelming
force. For example, the “blind” label already cited, or others referring to
striking disabilities, such as “mentally handicapped” or “crippled”. It is an
important feature of our thinking that if we hear several characteristic things
about someone or something we retain the strongest and the others fade. Allport illustrates the labels of overwhelming force with
the example of the humane, Chinese, sportsman, doctor. According to the
author’s hypothesis, it is highly likely that of these traits only one will
impress us with overwhelming force: “Chinese”. Other such labels, from the
many, are “fascist”, “negro” and “blind”.
The approach used consistently in
this book of always speaking of a person with a disability is backed by the
observation of the famous anthropologist, Margaret
Mead. She pointed out that labels of overwhelming force are weakened if
they are transformed from a noun into an adjective, from subject to descriptor.
And if we were to use them this way in everyday life, we would ease the burdens
of the modern Hephaestuses.