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1. 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.
(By Committee for the Jubilee day of the community of disabled
persons in preparation for the jubilee day, 3 december 2000)
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