THE CONCEPT OF HUMAN DIGNITY IN RELATION TO CHILDREN WITH DISABILITIES 109

3. THE DIFFERENT CONCEPTS OF HUMAN DIGNITY, ETHICAL PERSPECTIVES, AND THE

3.2. THE CONCEPT OF HUMAN DIGNITY IN RELATION TO CHILDREN WITH DISABILITIES 109

The two previous chapters gave a well-modelled exposition of the situation in the Province of KwaZulu-Natal, in relation to children with disabilities. There was an informative evidence of many innocent children with disabilities who are abandoned by their primary care givers, some of whom are dumped in inhuman conditions that makes their survival impossible and while others are exposed to child homicide.⁵³⁶ Some children are deemed as non-human, while others are categorised as unwanted children in society.⁵³⁷ The physiological condition or state of their life renders them to be looked at as undignified state of life, not worthy of living hence they are sometimes victims of child abuse that manifests itself in various forms by their parents or care-givers.

Such an exposition partly explains and unfolds a unique worldview regarding the situation of children who are born exhibiting strange features that disqualify their identity as human beings, at least in certain quarters of life. External perceptions of people, especially in contemporary society, have created a volatile environment for the most vulnerable innocent children with disabilities.⁵³⁸ Some of the effects of the current human perception towards the state of being physically and mentally disabled constitute the decay of personal morality expressed through our dispositions and certain habits; and the limitation of one’s rationality,

536 Kwazulu Natal Department of Education, (2010), Policy Guidelines for the Management of Child Abuse and Neglect in KZN Department of Education, Compiled by School Social Work Component. 6-7. Abuse of children constitutes emotional abuse i.e. attacks on the child’s emotional development and self-worth via criticism, belittling and insulting the child. It also means rejection, withdrawal of love, support, and guidance.

Neglect means any act or omission by a parent or caregiver which results in impaired physical function, development, injury, or harm to the child. The policy was put in place to address the problem facing children who are abandoned or neglected by their parents and sometimes dumped in inhuman conditions.

537 Ibid.12-13 The section presents certain characters developed by neglected children because of wrong perceptions people have towards children. Most of these children are physically or mentally challenged.

538 Kass, L.R., (2008), Defending Human Dignity, in The President’s Council on Bioethics, Human Dignity and Bioethics, Washington DC: Independent Agencies and Commissions, 297-331.

clinging only to personal interests, at the expense of objective core values.⁵³⁹ It has also led to the outbreak of violent ethics that are exclusive.⁵⁴⁰ It has compounded heavily on people’s attitudes towards those whom society deems as an unproductive group of people who can hardly contribute anything positive to society.⁵⁴¹ The question of human values has taken a new twist in the current worldview, due to the change of things, generally, change in people’s mentality, change of times and the constant change in scientific and technological facets of human life.⁵⁴² The human person seems to fail to cope with a constant transition of life issues especially in the context of reign of democracies and the realization of human rights. Certain human values seem to be compromised heavily, for instance the value of life itself viewed from the experience facing children with disabilities becomes meaningless in a world of the survival of the fittest. It has become extremely difficult to make sense of certain life challenges and even to find proper solutions to the current challenges facing children with disabilities. One of the various perspectives of human dignity is what Ikeda called the

“irrevocable destruction of the irreplaceable lives”.⁵⁴³ Blackie’s fieldwork, conducted in the year 2013 and 2014 involved an in-depth interviews and participant observation with young women experiencing unplanned pregnancies, women who had been apprehended for abandoning their children, community members, police officers, nurses, social workers, baby home managers, caregivers, adoption social workers, foster care and adoptive parents, psychologists, psychiatrists, legal experts, traditional healers and abandoned children, presented the facts and findings of their fieldwork that correspond with the same problem addressed in the current study.⁵⁴⁴

Human dignity is one of the core criterion to support the ideal situation for children with disabilities. In the process of entering the theological domain of human dignity, the project will first examine “human dignity” as an ethical concept, examine the different facets of human dignity, i.e. human dignity understood as rights, freedoms, responsibility, autonomy, Imago Dei, natural law, and dignity as existential human value. The project will consider the evolutionally progression of the various facets of human dignity and examine how some of

539 Peschke, C.H., (1979), Christian Ethics Vol. One: A Presentation of the General Moral Theology in the Light of Vatican II, Dublin: C. Goodliffe Neal, 197.

540 Ibid. 196.

541 Fuchs, V.R., (1982), Economic Aspects of Health, Chicago: University of Chicago Press, 4-6. Fuchs in his paper argues that time preference is likely to be negatively correlated with schooling, negatively correlated with health status, negatively correlated with social investments. In this case, children with disabilities weighed from the perspective of productivity, it is unlikely that people would invest in them hence discriminated.

542 Ibid.

543 Daisaku, I., and Wilson, B., (1984), Human Values in a Changing World: A Dialogue on the Social Role of Religion, London: MacDonald & Co (Publishers) Ltd, 71.

544 Blackie, D., (2014), Fact Sheet on Child Abandonment Research in South Africa. In National Adoption Coalition. Pretoria: SA’s Adoption Assistance Centre, Issued on 20^th May.

them have become predominant over the others, imposing change of character in people’s mentality towards children with disabilities. Finally, in this chapter we will show how society has used the concept of human dignity for subjective interests, over-ruling certain ethical norms, the person’s autonomy, and the inherent right to life of children with disabilities. The synthesis of these diverse notions of the different perspectives will complement the subject matter.

3.3.1. HUMAN DIGNITY AS AN ETHICAL CONCEPT

Human dignity as an ethical concept has posed as a contentious moral conundrum among contemporary ethicists. In the realm of medical ethics, there is more emphasis on the patient’s autonomy than on human dignity.⁵⁴⁵ The understanding is that if people have strong respect for personal autonomy, there is no need for an appeal to the concept of human dignity.⁵⁴⁶ The goal of personal autonomy and human dignity is geared towards the protection and safe-guarding of ones’ inherent rights and in this case, children with disabilities. This is what the practice of medicine ought to be. This was explored at length by Ruth Macklin, who ruthlessly concluded that dignity is a useless concept, as it adds no extra value to what we could call ‘human worth’.⁵⁴⁷ Macklin recognized the principle of personal autonomy and informed consent as the bedrock of ethical research and practice.⁵⁴⁸ In consideration of Macklin’s point of view as presented above, human dignity can hardly be used to determine the value of the person’s life especially the life of a child with disabilities. The objection to this reasoning is because the situation on the ground is contrary to what Macklin is advocating i.e. personal autonomy and informed consent of the child with disabilities. The research findings of Dee Blackie revealed that many people have very little respect for personal autonomy, considering the numbers of children who are abandoned and dumped by siblings.⁵⁴⁹ Therefore it is not enough in this regard to consider personal

545 Harris, J., (2003), The Value of Life: An Introduction to Medical Ethics, London: Routledge & Kegan Paul Publishers, 195-198.

546 Ibid. Paternalistic interference is out of question hence personal autonomy takes priority needing no appeal to human dignity. In principle, the goal of personal autonomy and human dignity are related pointing to one element i.e. the welfare of a person.

547 Pinker, S., (2008), The Stupidity of Dignity in The New Republic, published on Wednesday, May, 28. This phrase “The Stupidity of Dignity” per Steven Pinker does not mean that human beings lack an inherent dignity or moral worth rather it means that the term “dignity” itself has been constantly abused that it has become almost worthless in moral debates. The issue is, how can we justify mercy killing as dignified death without the consent of the child herself or himself. Mercy killing as the means to eliminate pain and suffering of the child cannot be termed as dying with dignity without the consent of the child. It is in such circumstances that the term “Dignity” has been abused and it has become a useless concept depending on its usage.

548 Ibid.

549 Blackie, D., (2014), Fact Sheet on Child Abandonment Research in South Africa. In National Adoption Coalition, SA’s Adoption Assistance Centre, Issued on 20^th May.

autonomy as the only criterion to determine one’s worth. The problem lies in the understanding of the concept of human dignity.

Being sick, or being in a state of physically or mentally disabled is often taken as undignified life.⁵⁵⁰ Extreme poverty is also a root cause of other forms of deprivation to survive, develop and to be protected. It is thus regarded as undignified life.⁵⁵¹ In consideration to the perceptions cited above, we can ascertain that certain conditions of human life, such as severe sickness of any sort, extreme poverty, the state of being physically and mentally disabled and many other related situations, might rob a person’s worth. In the case of severe mental and physical disabilities, some people would consider the relief of suffering as the highest good.⁵⁵² Assisted suicide and dumping of children with disabilities may often be justified from that perspective. This is based on the understanding that the preservation of life is not always paramount.⁵⁵³ There is an assumption that a patient does not have absolute autonomy and, in this case, children with severe disabilities may also fall within that category.⁵⁵⁴

The present thesis questions the validity and reliability of such assumptions, as they can be used in the abuse of basic human rights in the context of a volatile environment where the rate of child abuses is high. Considering the above discussion on human dignity, there is a high risk of imposing personal interests and choices on the most vulnerable groups of people.

The normative perspective could be to put emphasis on what “ought” to be done that could respect the rights of children with disabilities. In this regard, using the concept of human dignity as a criterion for the termination of human life might be over-stretched though there are conflicting understandings on the interpretation of the concept itself i.e. the concept of human dignity. Human dignity as an ethical concept ought to transcend all subjective and personal affiliations. It ought to recognize the sanctity of life of children with disabilities and hence worthy of a criterion to preserve the life of children who more prone to vulnerability.

550 Binding, K. and Hoche, A., (2007), Permitting the Destruction of Life Unworthy of Living, in Weitz, E.D.

and Roubinek, E.S. (Eds), for certain populations and this population included mentally and physically disabled people who posed Re-Imagined Communities: National, Racial and Colonial Visions in Nazi Germany and Fascist Italy, (1922-1943), Minnesota: Minnesota University Press, 1-2. In this article, Binding and Hoche argued in favour of allowing the practice of euthanasia as financially burdensome to society and they offered a legal basis for permission to kill them.

551 UNICEF Report, (2009), Situation Analysis of Children in South Africa as ratified by South Africa framing devices to assess right’s implementation of the South African Children.

552 Harris, J., (2003), The Value of Life: An Introduction to Medical Ethics, London: Routledge & Kegan Paul, 81-85.

553 Ibid.

554 Ibid. 85-87.

3.3.2. DIGNITY IS RELATIVE

Ascriptions of dignity vary radically with time, place, and the beholder. For example, Küng, H., a Swiss theologian who was diagnosed with Parkinson’s disease and macular degeneration which can eventually lead to blindness, perceived human dignity in a unique way when he associated it with Parkinson disease.⁵⁵⁵ In an interview with Jimmy Burns concerning his health situation, Küng stated that he is considering assisted dying in neighbouring Switzerland.⁵⁵⁶ The renowned theologian considered living a life with dementia, Parkinson’s disease, macular degeneration and polyarthritis as an undignified life not worthy living.⁵⁵⁷ He could not perceive such a life, in which he would be ridiculed by children in the city.⁵⁵⁸ He was somehow contemplating that assisted suicide would be one of the means of giving his life back to God.⁵⁵⁹

We therefore assume that the choice he made was in line with his personal conviction that opting for euthanasia would be regarded as a personal call of duty to be responsible for the end of his life. Belgium has recently legalised euthanasia for terminally ill children of any age though on a wider level such a move has caused outrage from various sectors of life.⁵⁶⁰ There seem to be a strong wave worldwide that is aimed at doing away with life that is considered not worthy of living, while contrary to that motion, many Christians, Muslims and Jews have strongly condemned the act, as it would encourage the legality of assisted suicide for children with disabilities side-lining their autonomy.⁵⁶¹ Similar sentiments and inclinations might be felt among families and mothers, who might be overwhelmed by the reality of having a child with disabilities. Based on different life experiences, some families may feel that they have an obligation to do away with the child with disabilities, since it is a life not worth living.⁵⁶² It is in this sense that the term “dignity” is relative. It can mean anything to anybody. Modern demographics, in view of advanced medical research, new

555 The Tablet Interview, (2014), Frank Exchanges, in the “The Tablet”, 1^st February Issue, 7.

556 Ibid.

557 Ibid.

558 Ibid.

559 Ibid.

560 Roberts, J., (2014), At the Hour of our Death, in “The Tablet”, Legal Matters of Life and Death, February Issue, 22^nd February, 4-5.

561 Ibid.

562 Binding, K. and Hoche, A., (2007), Permitting the Destruction of Life Unworthy of Living, in Weitz, E.D.

areas of theological and philosophical debate on such acts of assisted suicide, have opened new avenues in society.⁵⁶³ To this effect, we observe that the perception of human dignity among many scholars and ordinary people in society has taken a novel outlook contrary to the ideals perceived by Christian theological beliefs.

At this point, we may affirm that once human dignity becomes relative, it may open the window for potential possibilities of child abuses. People in certain sectors of life may justify the act of abandoning, dumping, and killing children with severe disabilities.⁵⁶⁴ It is this understanding of human dignity that contributes negatively to the current situation of children with disabilities. Experience and mere observation of the situation in the region of KwaZulu-Natal indicates that there is a clash between the ethics of value and ethics of duty.⁵⁶⁵ Thomas Higgins posed a question: “Does the morality of an act depend on its nature or its consequences?”⁵⁶⁶ From the perspective of the current discourse, a moral evaluation of any human act associated with children with disabilities is determined in two ways, the ethical moral evaluation, and the Biblical moral evaluation. From the ethical moral evaluation which may apply to wider community the same, there are factors that determine the morality of an act, namely the moral object, the intention and the circumstances.⁵⁶⁷ From the Biblical moral evaluation of an act, the morality of an act is based on two great commandments, love of God above all else and the love of your neighbour as yourself.⁵⁶⁸ From this point of departure, we affirm that an ordered love of God, your neighbour and

563 Pinker, S., (2008), The Stupidity of Dignity in The New Republic, published on Wednesday, May, 28. This phrase “The Stupidity of Dignity” per Steven Pinker does not mean that human beings lack an inherent dignity or moral worth rather it means that the term “dignity” itself has been constantly abused that it has become almost worthless in moral debates. The issue is, how can we justify mercy killing as dignified death without the consent of the child herself or himself. Mercy killing as the means to eliminate pain and suffering of the child cannot be termed as dying with dignity without the consent of the child. It is in such circumstances that the term “Dignity” has been abused and it has become a useless concept depending on its usage.

564 Otieno, G., Marinda, E., Barnighausen, T., and Tanser, F., (2015), High Rates of Homicide in Rural South African Population (2000-2008): Findings from a Population-Based Cohort Study, in Population Health Metrics Journal, Johannesburg: BioMed Central Publishers, 2-9.

565 Ethics of value denotes the belief in certain realities and norms that safeguard core principles of life where as ethics of duty mandates someone to execute certain obligations while weighing the values that are in conflict while considering the best option that is realistic and manageable.

566 Higgins, T.J., (1967), Ethical Theories in Conflict, Milwaukee: The Bruce Publishing Company, 21.

567 Di Ianni, A., (1979), The Direct / Indirect Distinction in Morals. In Curran, C.E., McCormick, R.A., (Eds).

Reading in Moral Theology No.1. Moral Norms and Catholic Tradition, New York: Paulist Press, 215-243.

By moral object is meant what the free will chooses to do in thought, word, or deed or not to do. The intention is the purpose for which a person acts. It is the motive or reason an action id done. Circumstance means all the elements that surround a human action and affects its morality without belonging to its essence. Circumstances may sometimes change the degree of goodness or badness of an act. Also, check The Catechism of the Catholic Church. Art. No. 1750.

568 Pontifical Council for Justice and Peace, (2004), Compendium of the Social Doctrine of the Church, Nairobi:

Pauline Publications, Art. No. 204.

yourself would best suit the contemporary situation facing children with disabilities and may be a suitable basis for morality. Based on the above evaluation of morality of a human act, abandonment, dumping and mercy, or direct, killing of children with disabilities might have failed to meet the above criteria for justification of an act. We therefore affirm that the morality of abandoning, dumping or killing of children with disabilities ought to be grounded on the ethical and Biblical moral values enshrined in the social doctrine of the Christian faith and in morals.⁵⁶⁹

We may consider them as carrying a compelling weight within the context of the determination of the morality of certain actions directed towards children with disabilities.

Based on these grounds, morality would be considered as such that one is commanded by it and there is no option of opting out of it or making the claim that it does not apply to you.⁵⁷⁰ There exist certain types of actions which are absolutely prohibited by law, even in cases where the action would bring about more happiness than the alternative.⁵⁷¹ For instance, some primary care givers or mothers would feel much more relieved after abandoning, dumping or killing of a child with disabilities. In this regard, the Children’s Act brings about the law to take the perpetrators to justice as enshrined in the laws of the nation i.e. The Constitution of the Republic of South Africa.⁵⁷²

3.3.3 HUMAN DIGNITY IS SACRED

Gaudium et Spes highlighted one of the most important issues of the time, which is the solidarity of the Church with the whole human family, saying:

“The joys and hope, the grief and anguish of the men of our time, especially of those who are poor or afflicted in anyway are the joy and hope, the grief and anguish of followers of Christ as well.” ⁵⁷³

569 Ibid. The article puts more weight on the rights of children to be legally protected within the juridical system.

On the other level, the Church’s social doctrine constantly points out the need to respect the dignity of children.

It further says that the above affirmations are true for every child, but it becomes even more urgent the smaller the child is and the more it needs everything when it is sick, suffering or handicapped. This can also be affirmed in John Paul II’s Apostolic Exhortation Familiaris Consortio, 26: AAS 74(1982), 111-112.

570 Ibid. We have some belief systems in Christianity and in other religions that informs us of certain values that must be promoted if at all human rights would be meaningful. To this effect, we do not compromise any of those Gospel values because they have a universal quest for meaning. For instance, any criteria of judging the molarity of an act that discriminates children with disabilities would be contrary to Gospel values and at the same time, they would be contravening the letter and the spirit of human rights for children with disabilities.

571 Children’s Act 38 of 2005, states that the ratification of this Act is to give effect to certain rights of children as contained in the Constitution; to set out principles relating to the care and protection of children; to define parental responsibilities and rights; to make further provision regarding children’s courts; to provide for the adoption of children; to provide for inter-country adoption; to prohibit child abduction and to give effect to the Hague Convention on International Child abduction; to provide for surrogate motherhood; to create certain new offences relating to children; and to provide for matters connected therewith.

572 Ibid.

573 Vatican Council II, (1965), Gaudium et Spes: A Pastoral Constitution on the Church in the Modern World, 7^th December, 903.

Dalam dokumen “A theory of human dignity” for children who are born with acute physical and mental challenges grounded on the social teaching of the Roman Catholic Church in KwaZulu-Natal, South Africa. (Halaman 109-117)