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digression through the ages, to evaluate the importance and changes in the
attitudes of various cultures and populations towards the physical and mental
handicap.
The very first moments of life
are extremely delicate for all ancient Romans. By law that baby is not yet
completely “born” but is so only when the father takes it in his arms and lifts
it up to the sky. The baby that is not lifted by the father - and therefore not
legally recognized - can be "exposed", that is to say abandoned or
killed.
In the
Christian Middle Ages the birth of a deformed child is an attack on nature's
perfect order, a divine punishment and an unmistakable expression of God's
rage. .
The
inheritance first and second world war was 15 million dead, 8 million invalids,
mutilated and blind. This dreadful and unprecedented tragedy has the
disconcerting power of dragging an enormous number of people down into the
infernal circles of the handicapped (physical, mental and sensory). Despite
being stigmatized, the war veterans gradually begin to be looked after. The
state does this by means of the newly established public health and some
embryonic forms of Social Security.
Lebensunwerten Leben: life
unworthy of life; life that does not deserve to be lived. Gnadentod: death by grace or mercy killing. One of the most
horrific events of the twentieth century rotates around these two expressions.
On May 3rd 2008
the United Nations Convention for the rights of disabled persons comes into
effect. It strongly reaffirms those fundamental rights and freedoms that mean
full social, political and economic participation by all people with
disabilities (men and women) in all countries they were born and live in.
INTRODUCTION
This paper is a
brief digression through the ages, to evaluate the importance and changes in
the attitudes of various cultures and populations towards the physical and
mental handicap.
The welfare system needs a new definition
of the term "disability”. The recent Convention on the Rights of Persons
with Disabilities of the United Nations [1] mark a turning point on the big
issue of human rights. The article 1 state: "Persons with disabilities
include those who have long-term physical, mental, intellectual or sensory impairments
which in interaction with various barriers may hinder their full and effective
participation in society on an equal basis with others." [1].
From this statement we analyze the
characteristic elements of disability: body perturbation that produce a functional
or anatomical damage that interacting with the contest limit and reduce the
social participation of people.
Disability is a multifactorial condition
and physical, social and environment contest define itself.
Aim of this work is analyze the evolution
of disability concept through the ages.
The Graeco-Roman World
In fact the very first moments of life are extremely delicate for all
ancient Romans, be they healthy or diseased. Healthy: as soon as the baby is
taken from the maternal womb, the midwife takes it before the pater familias
and places it at his feet. By law that baby is not yet completely “born”
but is so only when the father takes it in his arms and lifts it up to the sky.
Tollere liberos, lifting the children, is the expression which indicates
the coming to the world of the new human beings. It is interesting to note the
etymological affinity between tollere and the other verb tolerare (tolerate).
The baby that is not lifted by the father
- and therefore not legally recognized - can be "exposed", that is to
say abandoned. This can be outside the front door or on a pile of refuse. In
some cases they are picked up by someone, if not death awaits them. The reasons
which drive a father to decide on exposition are numerous: it could be in order
not to change the inheritance will, it could be a suspicion that the infant is
borne from an adulterous relationship or even the impossibility of feeding another
mouth. Likewise they are all forms of neonatal disability by paternal decree.
In the case of the baby being deformed its fate is doomed - it will not
even be exposed - it will be killed. Sometimes the midwife’s secret pity, or
that of the servants can save it from immediate death (thus delivering the
baby, and themselves, from the paternal authority): but the infant’s chances of
survival are practically non-existent. Therefore, in the Roman world neonatal
physical disability is practically impossible, seeing as it is unacceptable.
However a disability can occur in the course of ones life. What effects
does this have? We must point out that for the citizen of Republican ancient
Rome, the integrity of the body goes hand in hand with the honour of the cognomen
or the gens. The body cannot lie, it is a man's visible reality. It is
thus both a duty and a necessity to take the utmost care of it as it is not
merely appearance, but also substance, and a documented guarantee of the
authentic quality of a person.
On the basis of these observations it is
not difficult to comprehend the profound motives justifying the suppression of
a deformed baby, and furthermore, to understand the difficulties that a man who
became deformed during the course of his life faced.
There is the case of the legionary who returns seriously wounded from a
military campaign. He has fought for Rome, and so Rome welcomes, thanks and
honours him but has no use for his tortured and injured body. This war veteran
who is deminutus is no longer a perfect citizen. For example, he is in
no condition to be sacrificed to the gods as the body of the sacrificed must be
perfect, as does the body of the sacrificial animal. The war veteran returns
home, but apart from the right to vote, he is forced to the sidelines of civil
life. In his flesh he painfully bears the stigma of Rome's grandeur, but
unfortunately his disability makes him both a hero and a half-man at the same
time.
It is here that the concept of stigma is introduced: a physical
branding, a permanent blemish which marks a person forever, for the better or
the worse. In ancient times it also marked the bodies of delinquents and
slaves. For people suffering from disabilities, in every place and period of history,
the physical stigma also became a moral one. According to the Canadian
sociologist Erving Goffman, there are three fundamental types of stigma. The
first is caused by deformities and disabilities (Goffman places character flaws
second. The third type is tribal stigmas of race and religion).
According to Goffman deformities and physical disabilities cause a
strong discordance between the idea of a person and the person them self (when
faced with someone’s physical appearance
it is possible to classify them, but when faced with a body or behaviour that
is different from one's own, it is difficult to do so). Therefore the disabled
person - in the same way as the diverse, the stranger or the foreigner - « is relegated from
being a complete person, to whom we are commonly accustomed, to being a marked
person.» This is because they lack that something necessary to include
them in a recognized category. This shortcoming is a negative stigma, especially
if it causes «deep discredit» [3].
The Roman war veteran with all his wounds and mutilations carries a
negative stigma. Although he is a national war hero, in the citizen’s eyes he
is marked for life in spirit and body. His life will never be the same again.
Let us take step backwards to ancient Greece in order to understand how
individual physical decay, the handicap, could sometimes evolve into an
extremely positive and advantageous opportunity for the whole polis. The
"branding" of a person - in order that the whole community can
recognize its essence and function - is a widespread practice for the ancient
Greeks, one closely connected to the idea and figure of the scapegoat.
In a city devastated by famine, plague or a lost war, the town worthies
choose a subject (man, woman or both together) who symbolically weighed down
with all the sins of the people, is put to death in order to restore health and
prosperity to the nation (the rite was also practiced in Rome when under threat
by Hannibal). But who is this subject? How is the scapegoat chosen?
The greatly respected Scottish anthropologist James G. Frazer
(1854-1941) stated: «The Athenians
regularly kept - at the States expense - a certain number of degraded and
useless creatures, and in times of plague, drought or famine two of these
hapless souls were sacrificed». He continues: «The custom of the scapegoat
practiced by the Greeks in Asia Minor in the VI century B.C. was the following:
when a town suffered a plague, hunger or other public calamities, a deformed or
ugly person was chosen to bear all the ills affecting the community. The chosen
person was taken to a suitable location [...] where he was beaten seven times
on the genital organs with squills, wild fig branches and the branches of other wild trees, while others played a special
melody on flutes. He or she was then burned on a stake made of forest tree wood
and the ashes thrown to sea» [4].
As long as degraded, useless, ugly,
deformed and disabled people were used as scapegoats; at least they had a
positive role to play in the communities they belonged to. In this sense it is
interesting to note how the Greek word to define a scapegoat victim is pharmakós,
and how this has the very same etymology as pharmakón, that is to say
cure, remedy, a substance of therapeutic value (but also: poison). To sum up:
From being degraded, useless, ugly and deformed, the figure chosen for the role
of the scapegoat transfigures and becomes a miraculous and potent medication
that saves his country and people. It is through this ritual death that he or
she is redeemed from a miserable and foul life.
Regarding neonatal disability in the
Greek world, the same situation as described for the Roman world applies. Here
too the deformed baby is suffocated or exposed as well. Furthermore, exposure
can be even be carried out in advanced infancy if a disability occurs or
becomes evident.
However there is a considerable
difference with the Roman world concerning disabilities incurred during the
course of one's life (and in particular regarding war injuries). The citizens
identification with their own bodies is felt less strictly than in Rome. The soldier
who returns home mutilated can be treated, and therefore even receive a
primitive form of social welfare in the form of a mite handed out occasionally
to compensate for the inability to work. This must not in any case be mistaken
for the invalid's complete reintegration into society, as this did not occur in
Greece or Rome.
But who or what caused the birth of a
deformed baby? Well, the creature with coiled feet or with too many fingers on
his hand is the clear expression of divine anger; a fatal omen, a bad spell. It
is possibly the incarnation of a known or unknown misdeed already carried out,
or yet to be committed.
The wrathful God shows its power and
disrupts the fluids for the insemination; the sperm in man and the menses in the
woman. An improper combination, an excess or a sudden shortage generates the tèras,
the monster. The latter can also be generated by bestial couplings: as in the
story of the Minotaur, who is said to have been born from the ghastly
copulation between a woman and a bull.
This is the belief of many
philosophers and doctors. It also the conviction of Aristotle, whose influence,
as we know, lasted through the centuries. A physical deformity - even when
observed in the tiny body of a newborn - is a stigma, a badge of shame which
reveals a misdeed to the whole world.
Those affected by disability, but who
have a sound body, have a very different fate. This is the case of the blind,
deaf and insane. They are tolerated, and in some cases, even with a thousand
difficulties, held in special repute.
The blind, for example, despite not
being able to see the present, are thought to be capable of seeing the future.
This is thought to be due to their highly developed other senses, a sign of a
special kindness from the gods. It is not a coincidence that many renowned
soothsayers in history have been described as blind.
The persons who show a mental
deficiency often provoke fear and even respect, due to the fact that they are
not understood. Again, one imagines the deficiency as a vehicle for some sort
of supernatural sign. It is thought that even if gestures and words are
confused and nonsensical, they are expressions of a divine will. This is all in
principle. In real life it is more likely that the mentally ill are segregated
indoors and hidden from view. It is very rare that their prophetic virtues are
taken into consideration.
«You are blind in the ears and mind,
as you are blind in the eyes» [5]. This is what Oedipus shouts at the
soothsayer Tiresias, who has just revealed the terrible truth that makes him a
parricide, and also guilty of incest with his mother.
The tragedy of Sophocles places us
before two different disabilities at the same time. Tiresias is blind, while
Oedipus is lame (his name means "he who has swollen feet") These two
disabilities have very different meanings and importance.
Tiresias is not born either blind or
a soothsayer, but becomes so due to a punishment inflicted by a goddess. Some
claim that it was Era who blinded him for having revealed a truth which would
have best been kept secret to Zeus. Others claim that Athena was responsible
for blinding Tiresias as Tiresias had seen her bathing naked and was therefore
never to see again. Whatever the story, the poor man is given a gift - As
compensation he will now be able to see anyone's past and will know the future.
This how Tiresias is able to tear
Oedipus's veil of ignorance. The latter unknowingly shed his father Laiu's
blood, and was guilty of the terrible crime of maternal incest. And to think
that Oedipus is lame because his father exposed him as a newborn exactly in
order to avoid this tragedy (supposedly written in his destiny) by ordering
that the baby be hung upside down by his feet, and thus causing the deformity.
His handicap
(stigma) would thus have been "natural", and not caused by the
father's decision. The boy grows up and then seeks revenge for his parents
refusal. In this case, the story would assume a very different significance:
but it would no longer be Sophocles[6].
The Middle Ages and The Renaissance
In the Christian Middle Ages the concept
of disability for misdeeds did not recede. Far from it - the idea strengthened
and spread. The birth of a deformed child is an attack on nature's perfect
order, a divine punishment and an unmistakable expression of God's rage.
However, now the dock is no longer empty, but is definitely occupied by the
mother, guilty of having given birth to a child who is the son of sin, adultery
and the devil. She is the one and only protagonist of a monstrous and unnatural
sexuality and the unfortunate child is the tangible proof.
The stigma brands both the little
deformed child and the woman who gave birth to it. In the course of the last
thousand years many women have been charged with having slept with Satan, and
even accused of witchcraft. Their fate was to be burnt at the stake, sometimes
alongside their child. The idea of a horrific promiscuity, or even an alliance
between the woman and the devil has continued in the recesses of popular belief
until quite recent periods and is die hard.
In an era where medicine is still
unable to explain or give plausible answers, then the only voice able to guide
Man along these frightening and inaccessible paths, is the word of the Church.
If Pope Gregory the Great, the successor to Peter from 590 to 604, is convinced
that a healthy soul cannot live in a diseased body, then he is to be believed.
It is again strongly stated that the disabled person is also morally ill; that
the infirmity should be interpreted as an external sign of the rot corroding
the soul.
Although officially the practices of
suppression and exposure of wretched children have been abandoned, their
destiny is in any case in the hands of those who welcome them into the world.
Therefore in the very first moments of life, the Roman figure of the pater is
substituted by the midwife. It is she who first learns the truth; and after
having been purposely instructed by the ecclesiastical authorities, it is again
she who decides on the fate of those
newborn who having been judged as non-human, would not have the right to be
baptized anyway. So the midwife can have the faculty of killing the monsters,
and it is not to be excluded that she sometimes decides of her own initiative
to spare the newborn and the mother from a future of abuse and suffering. It
would then be sufficient to simply claim that the child was stillborn.
Having overcome the tough challenge
of birth, everything now depends on the family’s economic condition. The rich
have the possibility of choosing; of either keeping the deformed child and
bringing it up secretly hidden away in the house, or of giving it away and
abandoning it to its own destiny. The poor, who survive exclusively by means of
manual labour, have only the latter choice.
Medieval cities were swarming with
beggars, many of whom were invalids. They have been denied the chance of living
a dignified life, but they do have the "right" to survive by begging,
provided that they follow the rule of keeping the devastated parts of their
bodies well in sight for everyone to see. However strange it may seem to us,
the medieval beggars were not really outcasts. In fact, they are a necessity in
order for us to perform acts of charity. They are also organized, established
and live following the rules of human society [7].
It is here that one of the great
changes of the Middle Ages comes about: the notion of charity. Although the
disabled person has his guilt written all over his body, it is also true that
he or she bears public witness of human weakness. Therefore, it is the duty of
every good Christian to observe that illness through charitable and
compassionate eyes. After all, the gospel of Matthew states that in the act of
curing the diseased, Jesus « Brings our ailments onto himself and carries our
diseases» [8]. Saint Augustine also warns us that faith is expressed through
charity.
Therefore, the presence of invalid
beggars in the streets, squares and at the gates of medieval cities is
important. These individuals are socially and morally stigmatized, but not
completely banished from a world that needs them, in order to feel in harmony
with God. Whether these beggars are settled or travelling (those who can move
from town to town earn more), they still occupy a place in society, even if it
is at the bottom rung of the ladder. In the end, the way they are forced to
live ends up resembling a job. This consists in exciting pity by displaying
their wounds and deformities. The most skilful get the highest reward. It is
not uncommon for perfectly healthy individuals to disguise themselves as
seriously ill, putting on non-existent diseases to scrape a few coins together.
The fierce social crises, which
periodically disrupt the medieval world, caused by famine and war, drastically
change the attitude towards beggars. A "war between the poor" during
the course of which many behave in a harmful and marginalizing way towards the
weaker subjects in society.
Some diseases such as leprosy, excite
no pity, although they are crippling. The leper must immediately be isolated
from the rest of the community. Due to the danger of infection, purpose-built
hospitals for the chronics are set up and these must necessarily be situated
extra moenia or outside the city walls. The act of separating the diseased from
the world of the healthy is celebrated like a solemn funeral; crowds accompany
the diseased to the gates of the city to which he or she will never return.
With no possibility of being cured - he is in fact the victim of a terrible
decay and of a «gangrene that passes from the soul to the body»7 - the leper is
excluded from the community forever. The leper will go to live in a leprosarium
on the fringes of what was once his or her world. Any contact with the healthy
is prohibited, and if the leper is still able to walk, he or she must carry a
rattle around the neck to warn passer-by's of his or her presence.
However, it is the town itself that
ensures the survival of both the lepers and the leprosarium by means of
substantial donations in money and food.
A medal also has its reverse side.
The iconography of the Renaissance and the Medieval court often shows us
strange figures whose very presence is somehow “out of place” with their
surroundings, and with what we have said so far. What are these hunchbacks and
dwarves doing next to the king and his devotees? Are they not monstrous beings
too? Affected by deformity, the dwarf and the hunchback certainly contradict
the natural order, to which they are outsiders. But it is precisely due to this
obvious diversity that they are recognized as possessing extraordinary gifts
and faculties.
It is as if they are encircled by a
magic halo which protects them from the rage and revenge of Man. They are alone
in being allowed to blurt out the truth in the prince’s face, to mock him and
to deride power. In other words, to point out that the “emperor has no
clothes!”
No sane or healthy man could venture
so much without putting his own life at risk. But dwarves and hunchbacks, who
are enthusiastically welcomed at court (and often even listened to), can take
the liberty of all this, with powers who are otherwise lacking in magnanimity
and generosity.
Therefore, this time the stigma is of
a positive nature.
The Church starts to include all
those who for various reasons find themselves in conditions of difficulty, in
the extensive category of the “afflicted”. These are the physically and
mentally disabled, the poor (poverty is often synonymous of infirmity) those on
the fringes of society and the diseased in general. People who are – we repeat
– stigmatized by society, but who are given charitable help that is the
expression of Divine mercy.
It was during the Middle Ages that
the first hospitals and special institutes were set up to take care of the
needy and to relieve this suffering. These structures were run by religious
orders and offered free shelter and aid to many of those forced to live a
miserable and wandering life.
The idea that led to the birth of
these structures is a direct result of the notion of charity. However, there is
certainly also the clear intention of “separating” the sick from the healthy –
here again we see Seneca’s words which we started this brief journey through
time.
Separating the sick from the healthy
means hiding them from sight that can wound the eyes; it means protecting the
healthy from the excesses and violence of the insane. It also means organizing
a powerful instrument of control over all forms of “deviance”, whether due to
disease or an expression of antisocial behaviour.
A further separation, this time
between the patients starts to gain ground towards the middle of the sixteenth
century with the foundation of the first “madhouses” (like Santa Maria della
Pietà, in Rome). These are a sort of ante litteram mental asylums where the
demented are kept and attempts are made to cure them. However, the notion of
dementia is still very vague and ambiguous (it will remain so for a long time)
so it follows that these structures also take care of men and women who showed
signs of unruliness and rebellion against the authorities, society or their
families.
In the Tridentine catechesis, which
was approved by the Council of Trento (1545-1563) and promulgated by Pius V in
1566, point 287 makes precise reference to who is worthy and who is unworthy of
wearing the priest’s habit and administering the sacraments. The list of the
unworthy – after young children, the insane, slaves, the bloodthirsty,
murderers and bastards – also includes those «deformed by serious bodily
defects and the crippled. Deformity is repulsive and this disability can bar
the administration of the sacraments. » The Tridentine remained effective until
the New Catechesis instituted under John Paul II in 1992.
The
Eighteenth and Nineteenth Century
Medical Science underwent an
extraordinary period of development starting from the end of the eighteenth
century and then more substantially in the course of the nineteenth century.
The role of the doctor became better defined, especially with regards his role
in society. In fact, the doctor becomes a sort of intermediary between the
citizen and the powers of authority: he caters for the needs of the former and
represents the smiling face of the latter’s will and need to create order.
In this sense, medical progress opens
new scenarios. It now becomes possible to classify illnesses and therefore to
increase the control and repression of deviances. In this way, hospitals become
centres for both treatment and “record keeping”. The separation between the
diseased themselves (the curable on one side and the incurable on the other),
early signs of which were visible in previous centuries, definitely gains
ground with the establishment of the new idea of “rehabilitation”.
Depending on the seriousness of their
problem, the invalid can be rehabilitated. We must underline that this does not
mean fully re-introduced into society, which still prefers to keep them hidden
away and marginalized, but still useful.
On the other hand, mental disability,
which is scarcely understood and let alone treated, means being condemned to
definite internment. It is not until 1793 that French doctor Philippe Pinel
sensationally frees the demented from their chains in the Parisian hospital of
Bicêtre. In 1800, he then publishes his Medical-Philosophical Treatise of
mental alienation, which many «consider to be the “theoretic event” which
officially marks the birth of Psychiatry. The treatise states the possibility
of curing madness by means of two main strategies; the isolation of the patient
from the outside world, and “moral treatment” aimed at distracting the insane
from their obsessions to bring them back to reason» [9]. Therefore, to lock up
in order to cure, or rather, to lock up “and” cure. This is an important step
forward in form, even if, as we will see, in substance things will remain
unchanged for almost two centuries.
While the birth of the modern state
makes it necessary to control deviance through the expertise of doctors, it also
introduces an important change in the form of the institution of the public
hospital. In the Middle Ages, as we have noted, hospitals were the most
tangible result of Christian charity, and therefore had an exclusively
religious matrix. Before the seventeenth century is over we witness the
development of the first structures instituted and run by the state, these
hospitalized the ill and took care of the terrible effects of disease and
poverty. In 1674, the Hôtel des Invalides was founded in Paris. It was built to
give mutilated soldiers shelter and to guarantee their economic survival.
In these hospitals the intention of
control and repression where necessary, is much clearer, and is especially
evident in the attempt to divide the mass of invalids into distinct categories.
We have already mentioned the early mental asylums, while the creation of
institutes, which exclusively hosted soldiers, expresses two concepts; the
States gratitude to those who fought heroically, and the urgency of immediately
eradicating any possibility of rebellion or discontent due to poverty among
those who no longer had arms or legs enabling them to work for a living.
At the end of the seventeenth
century, near Milan, in Italy, the “Pious Home for the disgusting, impotent and
incurable poor” is founded. This is one of the first institutes not run by the
Church, and is located in a former hospital confiscated from a religious order.
The Industrial Revolution – which we
can date to beginning in 1760 – changed the forms of employment, but also the
face of disability. There is the first appearance of the invalids and mutilated
who have sacrificed their eyes and limbs to that undisputed totem that is the
steam engine. These are men in the prime of their physical strength, born
healthy and untouched by disease, and who suddenly find themselves physically
broken and no longer able to earn a living.
It is a difficult situation, as
industrial development has produced entire new working class areas situated in
the periphery of the big cities, populated by people who have emigrated from
the countryside in search of subsistence. It is in these areas, which are
increasingly looking like ghettoes, that for the first time one can witness the
devastating and alienating effects of progress: poverty, filth, alcoholism,
domestic and social violence and all types of disease. In addition to these,
there is also the progressive and unstoppable increase in permanent
disabilities. These render the victims unable to work and literally turn entire
families into down and outs. It is a ticking time bomb, which the state cannot
ignore.
Therefore, the first forms of public
social welfare are established. These are basic and limited, but do have the
aim of assisting the workers, especially if they are injured, and where
possible of avoiding the risk of revolt or uprisings. Once again, the doctor
who lives and works in these neighbourhoods has the double role of clinician
and “controller”, and who must be ready to denounce any sign of revolt and to
report the reasons for this discontent so they can be acted upon.
The delay with which
industrialization occurs in Italy means that the problem is postponed to later
years. In fact, the first state interventions in Italy are carried out in the
post-unification years. These only take shape concretely in 1898 with the
creation of the National Security funds for invalidity and old age. However,
the aid is not yet obligatory, and only becomes so in 1919.
In the nineteenth century the
combination of the desire to rehabilitate (including the body) and the growing
number of mutilated, has the effect of the great development in orthopaedic
instruments. These are rudimentary tools, such as busts, collars and wooden legs,
but they are also the first timid evidence that something is starting to change
in the common perception of handicaps. At least now, apart from separating them
from humanity, someone is “looking” at the disabled, observing and studying
them. Solutions are being found and in the years to come these will be improved
and applied more diffusely. This is a giant step forward from the pure and
simple mark of infamy.
Louis Braille became blind as a
child. He lost his left eye at the age of four while messing around with his
fathers tools in his saddle workshop. Shortly afterwards an infection also took
his right eye. In 1816 Louis is six and proves to be bright and intelligent, so
his family decide to send him to the Youth Institute for the blind in Paris.
The institute was founded in 1784 by Valentin Haüy, an enlightened pioneer in
the field of the education of blind children. The institute focuses on trying
to teach the young children a trade – such as weaving cane seats for chairs –
but this is not all, as Haüy himself has come up with a method that enables the
blind to read. It is a simple and rudimentary method, but it works. It involves
the use of another of the senses: touch. The children learn to recognize the
printed characters highlighted by copper wire on the back of the page. Louis
can now read, but it is still not enough; he wants to be able to write as well.
The idea comes to him during one of
the occasional visits that well-known characters of that era used to pay to the
institute. An officer tells the children about a system that the army is
perfecting that allows soldiers to read important dispatches in the dark. The
system is based on the combination of twelve projecting points.
Louis is dazzled and immediately gets
down to work. He makes every effort to simplify it, and reduces the number of
points from twelve to six. In circa 1830, he patents his own reading and
writing method for the blind: the Braille method.
The
First and Second World War
15 million dead, 8 million invalids,
mutilated and blind. The insane, the “war fools are innumerable.
The inheritance from the Great War
(1914-1918) is summed up by these figures. This dreadful and unprecedented
tragedy has the disconcerting power of dragging an enormous number of people
down into the infernal circles of the handicapped (physical, mental and
sensory). Every family is affected, and if it is not ones own then it is a
neighbour. There is not a single community spared from the drama. In a certain
sense, with the First World War, disability becomes a” mass” problem [10]. The
problem is immediately so serious and urgent that even in Italy, with the war
still raging, the National Institute for the mutilated and war invalids is
founded (1917).
The disasters of war inevitably bring
about a series of important changes in the way that disabilities are seen and
treated. All these people who against their own will now find themselves
condemned to a life of suffering and exclusion all have one thing in common:
They are all victims of the “State”, in the sense that they have permanently
lost their physical or mental integrity serving their duty as soldiers. This is
nothing new, but what is new is their frightening number.
It is no longer enough to confront
the problem by organizing “separation”, confinement and internment. It is also
unconceivable to apply the notion of guilt (social and religious) which was
used in the past to explain diversity to this category of people. In this
sense, the war invalid cannot be blamed. His only fault was that of obeying
orders and being in the wrong place at the wrong time.
Despite being stigmatized, the war veterans gradually begin to be looked
after. The state does this by means of the newly established public health and
some embryonic forms of Social Security. Medical science contributes, taking
advantage of technical progress, by developing and improving on the concept and
practice of substituting missing limbs. With the distribution of the new
prosthesis’s the idea of the reintegration of the disabled into society
continues to grow. This is an important improvement on the mere rehabilitation
linked to possible exploitation of the disabled as part of the workforce.
All this also has the effect of
improving the lives of those suffering from disease and congenital deformities.
However, they still have to climb the highest mountain, as the persistent and
common feeling of horror due to the diverse nature of their handicap shows no
sign of abating.
The Second World War (1939-1945)
replays the same identical drama, only that this time the numbers are
shockingly higher. The total number of dead rises to 55 million, with 24
million injured soldiers. However, the horrific novelty is the number of
injured civilians. The total number is imprecise and approximate, but the
figure is given as 32 million. A huge mass of people of both sexes and of all
ages, is mangled, blinded and driven to insanity by the bombs and mines. In
1945 the drama of disability cruelly touches all levels of society.
Hitler and “Life Unworthy Of Life”
During the
Nüremburg trial, a witness refers to have heard doctors Hevelmann, Bahnen, and
Brack announce during a private meeting in Berlin in February 1940, that the
government of the Reich had enacted a special measure. This authorized “the
elimination of life unworthy of being lived” with particular reference to the
incurable mentally ill [11].
The doctors were most likely referring
to an internal order signed by Hitler himself. In September 1939 this order
stated that two functionaries – one political and the other medical – had been
assigned to select a certain number of doctors and authorize them to grant
“death by mercy killing” to the incurably ill following human judgement.
Lebensunwerten Leben: life unworthy
of life; life that does not deserve to be lived. Gnadentod: death by grace or
mercy killing. One of the most horrific events of the twentieth century rotates
around these two expressions. In other words, the extermination of the mentally
ill and the disabled in general that was carried out with bureaucratic ferocity
by the Nazis.
Upon receiving the order from the
Führer, the machine is set in motion with name of Aktion T4 (from the
Tiergartenstrasse, the Berlin Street where the program’s operative headquarters
was based). The directors of the mental asylums and institutes that host the
ill are all sent a questionnaire. They are asked to indicate and specify the
condition of the patient’s health and their possibilities of recovery. It is
claimed that this is in order to evaluate their chances of joining the nations
workforce, but the real truth is kept secret not arouse suspicion or cause
alarm.
Many of the patients have been
“trained” to work and are to all effects a good source of income for the
institutions that host them. The directors are unaware of the real reasons for
these enquiries, they therefore exaggerate the gravity of the conditions of
health of their patients in order not to lose both money and workers. The
majority of them are declared unfit to work.
Thus, the directors condemn them to
death. This is put into practice by means of a list of all the ill patients
(between the ages of 6 and 93) to be taken away on an established date. The
directors are not informed of their destinations to avoid them from informing
the families of the victims.
However, we know where those buses
with their blacked-out windows and a heavy human load are headed: they are
going to Grafeneck, Hadamar, Hartheim, Bernburg, Sonnenstein and Brandenburg –
the six centres set up especially for the extermination. The 60 thousand
oblivious and helpless people that get off those buses die almost immediately –
most of them within 24 hours – killed by a lethal injection of Luminal, Veronal
and Morphium. Their bodies are cremated.
Following the protests of the
families and the Protestant and Catholic Church, the Aktion T4 is officially
suspended. However, the extermination continues unofficially in other death
camps. In May 1945, the final figures amount to 200 thousand dead.
From The Post-War Period to May 3, 2008
«Every citizen unfit to work and
lacking the necessary means to live has the right to maintenance and social
welfare. The workers have the right to be provided for and guaranteed due means
for their needs in the case of injury, illness, invalidity, old age and
involuntary unemployment. The disabled have the right to education and
professional training. The duties stated in this clause must be undertaken by
State organizations and institutes».
This is stated in article 38 of the
Constitution of the Italian Republic, which takes effect on the first day of
January 1948.
In this sense, our Constitution is in
line with the current United Nations Declaration of Human Rights, which states:
«All human beings are born free and with equal rights and dignity. » It
subsequently underlines that every individual has the right to security in the
case of illness or invalidity.
Everything changes with the end of the
last, terrible World War. As we have seen, just a few decades earlier such a
clear statement of principle would have seemed impossible, and not only in our
country. It is as if this horrendous tragedy had suddenly opened up hearts and
eyes. Now there is finally the birth and real development of forms of social
security, public health care and the rehabilitation of disabled people into the
labour market.
Therefore, we are in the presence of
a statement of principle, which will bring about laws that will drastically
change the status of the disabled. From the abyss that history had condemned
them to, the disabled have slowly risen up to becoming to all effects people
with rights and new possibilities.
Such fine and important words must
now find a practical application. The welfare state that intends to (and must)
take care of these people, and guarantee them assistance and opportunities,
needs to know the effective condition and genuine needs of these people.
Therefore the State turns to the doctor, who once again – and as has often
happened in the course of time – finds himself carrying out the key-role of the
intermediary between the citizen and the authorities. In fact it is the doctor
who decides the “percentage of disability”, by consulting special medical
tables he or she has helped draw up. In practice, by quantifying pain and
discomfort, the doctor sets in motion the chain of “rights” to be acquired in
the health and social fields. It is an extremely delicate and sometimes
difficult role, where not only good intentions, but also shared certainties are
necessary.
In order to advance along the path to
full integration it is indispensable to give a clear answer to some questions.
What is disability? What effects does it have? Who is the disabled person? Are
all disabilities the same? It is both urgent and fundamental to resolve these
queries.
A first attempt is made in 1980 by
the World Health Organization, with the approval of the International
Classification of Disabilities and Handicaps (ICDH). This classification is
based on three consequential concepts: impairment, which is the pathology
(disablement, if it is congenital); disability, which is the effect (or
effects) of the pathology; handicap, which is the social disadvantage
experienced as a consequence of the impairment and disability.
The ICDH with its imperative sequence
of (“if A, then B, then C”) soon shows
its limits. Firstly, there can be an impairment that produces a handicap and no
particular disability. Let us try to give an example: the impairment classified
as “disfigurement” can originate an “occupational” handicap, without passing
via other forms of disability (“if A, then C”)
Furthermore, only pathological
factors are taken into account and there is no mention of the environmental
factors (where one is born, where one lives). These factors are just as
important, and in some cases even decisive.
The third problem concerns the
possibility that the handicap may be caused by a temporary impairment, rather
than a permanent one.
These objections have been accepted
by the WHO and in 2001 it approved a new classification, the ICF (International
Classification of Functioning). This substitutes the terms impairment,
disability and handicap with the broader terms of corporal functions and
structure, environmental factors, activity and participation. Starting from the
choice of wording, it is possible to appreciate the effort being made to tackle
the problem from all angles and of opening up to increasing perspectives.
This is a necessary effort to manage
what finally appears for what it always was, a manifold reality.
On May 3rd 2008 the United Nations
Convention for the rights of disabled persons comes into effect. It strongly
reaffirms those fundamental rights and freedoms that mean full social,
political and economic participation by all people with disabilities (men and
women) in all countries they were born and live in[12].
These are not new words. Nonetheless,
it is necessary to repeat them so that they do not remain mere words, but are
transformed into facts on a daily basis. In some parts of the world this is
still a long way from becoming reality.
Finally, the Convention acknowledged
a concept we would like to underline: “Disability is the result of interaction
between people with impairments and behavioural and environmental barriers.
These barriers prevent their full and effective participation in society on the
basis of equality with others.”
This amounts to saying that the
concepts of “normality” and “disability” are linked in an indissoluble way to
the perception which – depending on the time and the place – a society has of
these two conditions. In short, it is a matter of “points of view”. Moreover,
at the end of this quick journey through time there is no doubt about which
ours should be.
REFERENCES
1. United Nations (2006) Convention on the
Rights of Persons with Disabilities.
2. Seneca LA (1994) De Ira, 15.2, trad. Aldo
Marastoni, Rusconi.
3. Goffman E (2003) Stigma. L’identità negata,
Ombre Corte.
4. Frazer JG (1965) Il ramo d’oro, Boringhieri.
5. Sofocle (1980) Edipo re, trad. Manara
Valgimigli, Sansoni.
6. Simone Korff Sausse, Da Edipo a
Frankestein.Figure dell'handicap.Ananake, Torino (2009).
7. Geremek
B (1987) L’emarginato, in L’uomo medievale, a cura di J. Le Goff, Laterza.
8. Sacra Bibbia, Matteo, 8.16,17; come citazione di Isaia, 53,
4.
9. Roscioni L (2003) Il governo della follia,
Bruno Mondadori.
10. Scianchi M (2009) La terza nazione del
mondo, Feltrinelli.
11. Agamben G (1995) Homo sacer, Einaudi.
12. ICF (2008) Classificazione Internazionale
del Funzionamento delle Disabilita’ e della Salute. OMS Ed, Erickson.