The ceaseless cycle of violence and cooperation of human being as cause of wellbeing and malaise – pt. 2: HUMAN RIGHTS

Human rights

Now considering the first thirty articles of the Human Right Declaration, lets try an exercise: how many of these statements do we still feel are valid? And how much have we really carried out? 

One only must look at the FAO report to read that in 2021 there were 812 million people in the world suffering from severe malnutrition, most of them children and most of them in Africa, consistent with the trend in the distribution of money, that divide in which wealth always accumulates in fewer hands. And again, the detentions for different political beliefs and torture that occur albeit rarely even in our European countries. Let us count the feminicides, of which Italy has the darkest flag in Europe. And slavery, has it really beeneliminated? Slavery was never actually abolished, rather it has redefined itself into newer forms[1]. One of its manifestations is in the form of worker exploitation. Capitalism has led to severe exploitation of workers working in the factories, where they are forced to work for long hours in extremely harsh conditions to make a living in order to serve the luxuries of the rich-income class. Indeed, they are almost working as slaves, and this in most countries, with a causal effect relationship between wealth and health. 

The Human Right Declaration has more to do with John Lennon’s Imagine than with the today health:

…Imagine there’s no countries
It isn’t hard to do
Nothing to kill or die for
And no religion, too

Imagine all the people
Livin’ life in peace
You may say I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man

Imagine all the people
Sharing all the world…

History, although the entitlement narrative is so epic, has indicated the coexistence in good and evil of human beings, as described by Yuval Harari in his brief history of the Sapiens. (8): “The animal that became a God: we have dominated our environment, increased food production, co-built cities, founded empires and created distant trade networks. But have we decreased the amount of suffering in the world? Time and again, massive increases in human power have not necessarily mi-improved the well-being of individual Sapiens, and have usually caused immense suffering to other animals.” While Imagine falls into Freudian ES, the Utopic “locus mundi”, historian Harari removes the veils of illusions and gives us a sense of reality. 

On the other hand, if we look to the studied history, amid old type of slavery, serfdom, inhumane working conditions, we can hope to have made progress on paper: utopian, in a dystopian world with islands of balanced reality. For people with disabilities, we know how much more stigma there was, they were sometimes suppressed from an early age and without any feeling of guilt: in such a strong metaphor as Homo Faber, The Man Who Makes, the Person who is unable to “Produce sustenance and wealth” is an error of nature. Or a terrible chastisement of God, sanctioning discrimination not only for the person but also for the family. A scarlet letter that can persist for generations.

Pause to the reader: maybe you are a student who wish to become a good medical doctor, or maybe you are a nurse, or maybe you are a policy maker for health care services. Why all these statement about the historical and the legal frames? Because we must know them before and during any act of looking after, taking care and caring both of ourselves and the others. I am quite confident that the you can find the technical features on how to run a right diagnosis during your internship and maybe with the aid of the good technology, a metaverse where you can practise yourself doing surgery on the virtual patients. But this competence of becoming more and more competent on Human skills (rights, empathy, compassion) and being aware on human limits (tyranny brutality, violence) must be a persistent tension in our professional and personal life. 

What we can do with these rights is analyse the communication style of languagefull of “universalism, said in the good way, but also with a derive towards “generalizations”: all, everyone, equality, man and women, rights, and duties. More rights than duty. The communication style on this right is Epic and Religious, very much recalling the Law of Moses, or the Quran, put in imperative mode, with no other possible options available. They are written as truism, but they unfortunately great fictions which do not consider the complexity of the human being in all his/her shades from white to black. This communication style tends to create, since these goals are so far away to reach delusional states, with people not ware of the sense of the reality: again, here the Ego is lacking in his/her adult phase. Please, do not think that I’m against these principles, not at all, but I find this way of communication not effective, naive and tending to be aggressive, since lacking of criticisms, and still not acknowledging that we are still animals, passionate by achieving, winning, whatever it takes. 

Take the first article 1 “All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and must act toward one another in a spirit of brotherhood”. Aggressive and constrained communication style. 

What about changing this dogma in this possibility to improve? “Human beings are born free and equal in dignity and rights. They are gifted by multiple intelligences, emotions, and consciousness. They can act toward one another in a spirit of brotherhood and sisterhood”.  Assertive and open communication style, including diversities and potential. 

Rights for disabled people

Rights for disabled people moved and moved slowly: it was not until 1975 that the term ‘Disable’ appeared with the UN Declaration, replacing ‘handicapped’. In this period, disability is something that strictly concerns the health of the subject, i.e. the approach to the disability issue is a health one. And it is this that represents one of the major limitations of this view, namely that everything must be consequential: 

  • first the impairment, understood as a physical or psychic anomaly, 
  • then possibly the disability, conceived as inaptitude with respect to a model, 
  • and finally, the probable disadvantage in relation to society that would result, defined as handicap.

It was only in 2001, with the ICF (International Classification of Functioning, Disability and Health) by the World Health Organisation, that a further turning point took place: the approach changed, i.e. from the medical model to the bio-psycho-social model, ‘shifting the focus from the reductive view of disability as merely linked to physical or mental impairment to the needs of the person’s environment’. Factors such as: the social, cultural, economic, physical, technological environment. Disability is thus defined as: ‘an unfavourable relationship between a person and his or her health condition and environment’, from which it follows that ‘any person at any time of life may have a health condition which in an unfavourable context becomes a disability’. Between disability, fragility and vulnerability the step is infinitesimal.

Disability linked to the relationship between the person and the environment also emerges from the document on the rights of persons with disabilities in the world, i.e. the UN Convention on the Rights of Persons with Disabilities of 2006 (in Italy Law 18/09). In its preamble it states that ‘disability is the result of the interaction between persons with impairments and behavioural and environmental barriers, which impede their full and effective participation in society on an equal basis with others’. 

In the UN Convention, these are the main rights that affect an estimated one billion disabled people on Earth:

  • Principle of ‘reasonable accommodation’ (which means creating necessary and appropriate modifications and adjustments that do not impose a disproportionate or undue burden, where necessary in a specific case, to ensure that persons with disabilities enjoy or exercise on an equal basis with others all human rights and fundamental freedoms)
  • Non-discrimination (children, adults and the elderly, women and men)
  • Accessibility (the removal of architectural barriers)
  • Situations of risk and humanitarian emergency
  • Equal recognition before the law
  • Access to justice
  • Freedom from violence and exploitation
  • Protection of the person’s physical and mental integrity
  • Respect for home and family
  • Education
  • Health
  • Habilitation and rehabilitation
  • Adequate living standards and social protection (social services must come into play in cases of disability: the family cannot be left alone)
  • Political participation

These are wonderful declarations, yet there are so many gaps in their implementation: if the health part is still partly covered by the medical care service (and fortunately in most European countries free of charge), for the remaining parts, the more welfare parts, the social services, which should also take care of integration into the world of work – the first point ‘accommodation’ – are often disconnected from health care and still linked to the religious and secular third sector. Although the importance of the third sector is fundamental, we understand that we are using ‘charitable and humanitarian’ organisations and not using rights, hence laws. Being taken care of living with a disability in its four dimensions (biological, psychological, social and spiritual) is not a universally applied right but becomes in some lands, near and far, a humanitarian, voluntaristic and occasional act: if we go back in History from the disabled children “killed” because they are not able-bodied in Roman society, or the disability seen as a divine condemnation and guilt to be atoned for, we have certainly made progress.

Examining the communication style we made some progress also, comparing it to the language used in 1948 for the human rights: I find very sensible that principle of “reasonable accommodation” which implies that everyone one has to be taken care of, but according the specific need and the specific culture of a specific context. While the principles of 1948 were absolute rights, here rights are pondered for what is at stake. There is a reachable tension: communication is full of potential, and ethics more than a simple moralistic genre. 

However, it is very difficult to apply these values and there are biological explanations: the “Different” and here we are in Merleau Ponty’s phenomenology makes us perceptually tend to avoid Physical Disability out of an instinct of self-preservation: we realise that from a physiological point of view, the inclusion of disability is not such a “spontaneous” phenomenon but an achievement: people must be educated since they are children to the inclusion of disability. Our ape brain, so layered during millions, has within it a part that calls for its own survival first (the reptilian brain) and if there is something ‘altered’ in the other, from ‘alter’ -other, not similar, it tends, without an educational pathway to the civilisation of accompaniment to retreat, leaving ‘diversity’ lonely, isolated, discriminated. (8). Yet we can learn so much, in an extraordinary way precisely from disabled people, people who can give us a new reading of reality with other eyes. 

Here too, despite the fact that we also know why we react this way facing disabilities, the human being in the contemporary age is backward, even though care and health technologies are progressing vertiginously: there is a lack of cross fertilizations between knowledge, like a tower of Babel in which social services do not talk enough with doctors, doctors with teachers, employers do not understand each other with employment centres, and sometimes they do not want too many people from ‘protected categories’. Although Italy has an advanced labour law, it is its application that often leaves something to be desired. We have invented the exoskeleton, a system that allows people with tetraplegia to walk: but how many disabled people can afford this prototype technology?

Where have we gone wrong in writing universal rights and “selling” utopian laws when reality is also a place full of dystopias? 

Lastly, also because they are and will be our future, I would like to dwell on the well-being and health of children, again according to the analysis of their rights: on 20 November 1989, the Convention on the Rights of the Child and Adolescent came into force, i.e. a treaty that includes all the rights of children, where the age is extended to 18 years.

The rights of children and adolescents

From this moment on, a new view was given on children and adolescents as subjects who have their own rights to respect and fulfilment. Here, the ten main articles:

  • Right to play
  • All children have the right to play and enjoy themselves.
  • Right to food
  • All children have the right to food and to be properly nourished.
  • Right to a home
  • All children have the right to have a home. A protected place where the child can live with understanding, love and care.
  • Right to health
  • The right to health in children is one of the fundamental rights to which every child should have access. The right to health is a compendium of physical, mental and social well-being, and even more so in children, who are more vulnerable to illness.
  • Right to education
  • All children have the right to education, regardless of gender, religion, nationality or any other status. The state must do everything possible to ensure that children have access to education.
  • The right to life and to have a family
  • The right of children to life and to have a family. Children, for the full development of their per-sonality, need love and understanding. To grow up under the responsibility of their parents and in an atmosphere of affection.
  • Right to have a nationality
  • From birth, the child has the right to have a name and a surname.
  • Children’s right to equality
  • Children’s right to equality, regardless of race, religion or nationality. This aims to ensure that all children are treated equally, regardless of their origin, the country they are from or the colour of their skin.
  • Children’s right to express their opinion
  • The Convention on the Rights of the Child recognises the freedom of children to express opinions freely, just like adults.
  • Children’s right not to work

The child must be protected from all forms of neglect, cruelty and exploitation. The child should not be allowed to work before an appropriate minimum age. (In particular, work is not allowed under the age of 13, and in Europe, work allowed between the ages of 14 and 15 is provided as a small ‘internship’ in alternating school and work.

If we look back and think about child labour, the law in Europe has certainly improved, and children have regained their childhood so well expressed in their first right, that of play: this is also thanks to the great movements of the early 1900s with Maria Montessori, Anna Freud, Sabine Spielrein, Melanie Klein, and I find it astonishing that only in 1989 were children recognised as subjects capable of expressing their own opinion. On paper. Forbidden are the phrases that many of our generation and previous generations grew up with: ‘Hush you who are a child, or that you are small’.

And how capable are we adults of freely expressing our opinion? Self-expression, the sharing of one’s ideas, is one of the first pillars for the mental well-being of the individual, and if it cannot be done directly, it will be together with the spoken word to people who really listen, the art that arises from the unexpressed inner energy (I do not wish to call it suffering) the most important way of sublimating the conscious and unconscious messages we wish to communicate. There are two words next to that enunciation ‘the right to have a family’ (and fortunately it is not explicated by whom), two words that explain what qualities this family must set in motion: love and understanding so that the child grows up in a dimension of affect, not of fear, of silence, of guilt. 

And I would like to turn to our world, the world of adults, along with art, how much in our free time – which is a right sanctioned by the United Nations – do we and do we still know how to play?  There are come polarities which are extreme: while I’m writing about the need to play (in Western schools with over competition the other allowed plays are technological videogames) my heart is destroyed thinking to the denied right to education, and to go to university to women in Afghanistan and to what Iran is experiencing now on women education.  

Few know that playing is good for you: the purpose of this chapter is not the ‘wow effect’ on technical discoveries and the beauty of the communication codes of human rights medical discoveries. It is to bring easy, sustainable, light-hearted solutions to create wellbeing. Read, if you wish, the secret to become a life player, so to learn to play with the justice, injustice, violent, not violent, easy and difficult thig and people that life will put on your desk in the Practice time.

Maria Giulia Marini

Epidemiologist and counselor in transactional analysis, thirty years of professional life in health care. I have a classic humanistic background, including the knowledge of Ancient Greek and Latin, which opened me to study languages and arts, becoming an Art Coach. I followed afterward scientific academic studies, in clinical pharmacology with an academic specialization in Epidemiology (University of Milan and Pavia). Past international experiences at the Harvard Medical School and in a pharma company at Mainz in Germany. Currently Director of Innovation in the Health Care Area of Fondazione ISTUD a center for educational and social and health care research. I'm serving as president of EUNAMES- European Narrative Medicine Society, on the board of Italian Society of Narrative Medicine, a tenured professor of Narrative Medicine at La Sapienza, Roma, and teaching narrative medicine in other universities and institutions at a national and international level. In 2016 I was a referee for the World Health Organization- Europen for “Narrative Method of Research in Public Health.” Writer of the books; “Narrative medicine: Bridging the gap between Evidence-Based care and Medical Humanities,” and "Languages of care in Narrative Medicine" edited with Springer, and since 2021 main editor for Springer of the new series "New Paradigms in Health Care."

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