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COMMITTEE FOR THE JUBILEE DAY
OF THE COMMUNITY
WITH PERSONS WITH DISABILITIES
PREPARATION
FOR THE JUBILEE DAY
3 DECEMBER 2000
PART FIVE
THE PERSON WITH DISABILITIES:
THE DUTIES OF THE CIVIL AND ECCLESIAL COMMUNITY
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:
Every
person with disabilities has the right to protection from discrimination and to
equal and full enjoyment of his or her individual human rights, as it is also
laid down in instructions given in:
·
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
person’s 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.
Conscious
acceptance
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.
Personal
solidarity
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 state’s 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 God’s
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.
Testimony
“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.
INQUIRING
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.
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