COMMITTEE FOR THE JUBILEE DAY
THE PERSON WITH DISABILITIES:
The richness of a person with disability is a constant challenge to the Church and society to open to the mystery such persons present.
The person with disabilities has rights and duties like every other individual.
Disability is not a punishment, it is a place where normality and stereotypes are challenged and the Church and society are moved to search for that crucial point at which the human person is fully himself.
This paper aims to help discover that the person with disability is a privileged interlocutor of society and the Church.
It is in this spirit that we entrust this preparation to all of you, in view of the full integration and inclusion of persons with disabilities in the life of the Church and society, to valorise the gifts they bring, to reconcile ourselves with them for failings in their regard in the spirit of the Great Jubilee and to encourage an attitude of caring, assistance and solidarity.
The Preparatory Committee
Rome 17 July 2000
I. DISABILITY IN INTERNATIONAL DOCUMENTS IN BRIEF
The General Assembly of the United Nations took the initiative of establishing December 3 as World Day for Persons with Disabilities, (resolution 47/3 taken on December 14, 1992).
In 1998 the United Nations Human Rights Commission declared, with resolution 1998/31 taken in April, that:
· The Universal Declaration on Human Rights,
· The International Agreement on Civil and Political Rights,
· The International Agreement on Economic, Social and Cultural Rights,
· By the International Convention on the elimination of all forms of discrimination against women
· By the International Convention on the rights of the child
· By the Convention on professional rehabilitation and work (persons with disabilities) number 159 of the International Labour Organisation.
Moving from the international corpus of human rights, applicable as we have said to all persons with disability, the United Nations adopted in 1993 Standard United Nation rules for attaining equal opportunities for persons with disabilities (resolution 48/96 of the General Assembly December 20, 1993).
Therefore any violation of the fundamental principle of equality, any discrimination or negatively differentiated treatment of persons with disabilities
is a violation of this persons human rights.
Formal guidelines indicate through laws principles and means for removing every obstacle, which impedes the full personal realisation of these persons.
The community, to which an individual with disabilities belongs, can and must work to attain the following goals:
a) To state that to render every environment of society accessible to everyone is a fundamental objective of socio-economic development;
b) To identify the essential aspects of social policies in the field of disability;
c) To supply models for adopting the necessary policies to attain equal opportunities in the different cultural contexts valorising the essential role of persons with a disability;
d) To propose mechanisms of close cooperation between governments, bodies of the United Nations system, other inter-governmental bodies and associations of persons with disabilities, through which States will be effectively able to attain equal opportunity for the person with disabilities.
II. INDIVIDUAL AND COLLECTIVE COMMITMENT
It is commonly accepted by all countries with a well-developed juridical order that the person with disabilities belongs, in parity, to social communities in their legal, associative, ecclesial or spontaneous expressions, since such a person possesses fully the inviolable rights of every human person.
State regulations indicate through laws - principles and means for removing all obstacles preventing a person with disabilities from reaching full personal realisation.
Nevertheless communities must become the main agent in the effective concretization of this parity.
We intend to indicate the means through which the community with a person with disabilities can and must work to attain these finalities.
Individually or as a community, commitment should develop along the following lines.
Recognition of the person with disabilities as a bearer of the Christian message of the relationship with God is the essential point of departure for a relation of parity between persons.
Disability challenges normality and its stereotypes to search for the crucial point in which the human being may be fully human.
This viewpoint reshuffles egoism and material security (racism, cult of esthetical perfection, wealth) putting more emphasis on the meaning of human life, its questions and its limits.
At the private level, the family faces the problem with its various aspects; affective, economic, educational, while the circle of friends, relatives and neighbours support, directly or indirectly, the family in difficulty.
At the public level, general sensitisation leads society to express a desire to compensate unfair difficulties provoked by a situation of disability, recognising that the person with disabilities has the right to take part in every form of collective life, including the time of leisure, vacation and culture.
Sharing is born from a level of fraternal parity, it does not come down from on high like a donation, and it suggests living as brothers and sisters. By recognising the difficulties of the weaker members, society seeks to attain a system, which is more generous towards its components.
Every form of active commitment to help the person with disabilities and his/her family context helps to improve the quality of life.
Today a privileged modality of this commitment could be the individual adhesion to one of the various forms of associations of voluntary work or organised solidarity, which are in perfect harmony with the Gospel message of the Good Samaritan.
Promoting assistance services
The United Nations Standard Rules indicate the various fields in which States can intervene with laws and measures: health care, rehabilitation, service of support, accessibility, education, work, maintaining income and social security, culture, leisure time, training of assistance personnel.
The line, connecting policies of government bodies and their acceptance on the part of citizens, must stimulate direct assumption of responsibility by individuals in all forms, from the protection of rights, to fiscal contribution to support assistance services, to adhering to programmes of prevention, to the promotion of legislative measures which indicate in every field of social life the collective will to respect parity of rights for persons with disabilities. If this is a criterion, which cannot be avoided for the Christian, it can in any case be a criterion of choice for every type of society.
The community is called to its moral and political duties by standard rule number 9 Family life and personal integrity, by rule number 12 Religious life, and by rule number 18 Organisations of persons with disabilities.
III. THE DUTY OF THE CHURCH
From a reading of the Standard Rules we can draw the following commitments for the Church:
1. The Church should work to propose in all her activity of formation, liturgy and solidarity a positive image of the person with disabilities. The concept of charity must be lived to the full, remembering that the person with disabilities must be an active subject in a relationship of love and not only the object of charitable actions.
2. The Church must be on guard to protect the guarantee of health-assistance, in particular she must work to ensure that investments in the field of prevention are respectful of the right to life of every person with a disability.
3. Often rehabilitation services have been activated at the initiative of church groups. It is important for the Church, despite the states tendency to reduce investment in this field of health-care, to continue to support the need to assign adequate resources to this sector.
4. The Church should promote a large scale social movement to remove all physical barriers and obstacles which impede access to communication and information beginning from within the Church herself: this entails not only removing architectonic barriers in churches, but also the diffusion of suitable means to allow every person with disabilities to live the life of the Church (translations in Braille; handbooks special prepared for persons with learning difficulties; celebrations accompanied by interpreters for the deaf; the use of a suitable terminology in the ambit of ecclesial information bodies ). In particular the Church should ensure maximum accessibility to her immense artistic heritage and numerous structures of accommodation for pilgrims including the people with disabilities.
5. The Church should be in front line in protecting the rights of child or adult with disabilities to education in all the formation environments run by church realities, from infant school to universities.
6. The Church must take action above all in those countries and circumstances in which the State does not guarantee persons with disabilities and their families the means for living a dignified life.
7. The Church has a great responsibility regarding the family, both to recognise and protect the right of every person with disabilities to live to the full the sacrament of matrimony, to have a family and bring up the children; and to support materially but particularly on the spiritual level, families where there is a person with disabilities - giving particular attention when the family faces this reality for the first time and needs special care and guidance to recognise nevertheless the signs of Gods goodness.
8. The Church must assume an active role to guarantee all these spaces of participation and must not wait for the civil authorities present in the different countries to act in this direction! It is particularly important to encourage persons with disabilities anxious to consecrate their lives to God and to stimulate the various religious Congregations to be ready to welcome in their midst persons with disabilities
9. Legislation, economic policies, national co-ordination are ambits in which the civil authorities act, and where the faithful as individuals and in church organisations have a responsibility of active sensitisation regarding the rights of every person with disabilities in every country. The Church has the possibility of carrying out fundamental action of capillary monitoring of the situation of persons with disabilities in all the outlying areas in which a community is present, so as to suggest suitable measures to those who have the responsibility of directing national and/or local policies. In particular the Church must assume the task of representing in all political areas the interests of those persons unable to defend their rights in their own; she must give priority to protecting what the Rules call the need to protect the private life of individuals and the integrity of the person from all interference which might be connected with activities of research.
Above all the Magisterium should stimulate and encourage all those who direct services or activities or provide information in society to assume the responsibility of putting their programme at the disposal of persons with a disability.
10. Missionary Congregations, Catholic NGOs, Diocesan Mission Offices must be attentive to the needs of persons with disabilities in all the activities they promote, whether specifically for the struggle against the handicap, or other more general finalities. The Church must work not only to encourage the formation of these organisations but also to involve their representatives in her central and outlying bodies, so as to valorise the experience of person with disabilities in every ambit of church activity. A fundamental commitment for the Church will be to form all pastoral agents not only those concerned explicitly with persons with disabilities to be conscious agents for the full integration of the person with disabilities in every church ambit.
CHIARA HAS A HANDICAP, WE HAVE ADOPTED HER
I remember clearly when she arrived. She lived in symbiosis with me for the whole of that first month, I could not leave her. Now that she is four and goes to kindergarten, it is almost unbelievable. This is how Anna tells the story of her daughter Chiara, adopted when she was not even a year old: She had suffered the trauma of separation from an almost adoptive mother, who after ten months realised the little one had a serious problem and felt she could not keep her. Yes, because Chiara has a handicap and so has her little bother Michele, he too adopted. Anna and Massimo have two more adopted children, who are older, Sofia and Leonardo who come from Brazil. Four all together. Anna and Massimo had first to struggle with a lack of understanding on the part of their families regarding their decision, judged to be rash rather than courageous. And today they live with the malicious criticism of people who, perhaps challenged by such evangelical radicalness, finding it difficult to explain, accuse them of wanting to open an orphanage and living off their children. But in actual fact Chiara is the only one with a disability allowance: 780,000 lire a month.
It is a sad fact that persons with disabilities are vulnerable to the change in social, political and economic movements. For example, it is foreseen that the present social transformation will result in an economic order in the 21st century, in which knowledge will be the main resource, rather than manpower, natural resources or capital; a social order in which inequality based on knowledge will be the greatest challenge; in public policies in which the government is unable to solve social and economic problems. What general principle will have to underline this transformation especially as far as it affects person with a mental disability and with connected disabilities? I would suggest that the concept of quality of life should provide a fundamental principle, oriented towards growth, which could be the basis on which to develop national and international policies regarding disability. Although the concept may be used for the wrong reasons, it pushes us in the right direction: towards programming and towards support centred on the person.
To conclude, since the principle of the quality of life has emerged in social programmes, interest for the concept has increased. There has been an increase in testing its consensual critical dimensions, using multidimensional means of measurement and in the application of findings in practice and in efforts to evaluate. Despite these efforts there are still many blanks in our knowledge. Public policies and organisations for training and rehabilitation find it hard to adjust to a paradigm of quality of life reflecting the revolution of quality. Those responsible for policies and directors of programmes need the most updated thought regarding the quality of life and its measuring in order to improve services and promote rational public policies.