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The expectations of society
Post modern society, marked by differentiation, pluralization
and radical individualization or, using other terms, narcissism,
pragmatism and unrelenting restlessness, faces the same time-old
challenges as ever regarding humanity and its destiny.
Humanity, made up of men and women, has values, which are constant
and go beyond anything that can be perceived using ideological
and philosophical systems of interpretation and comprehension.
The richness of these values constantly challenges society, calling
it to open itself to the mystery they present: the life of every
person is a mystery.
Humanity has always sought throughout history to penetrate this
mystery in different ways and with different results: at times
it tasted the greatness of the life of the human person, his thoughts,
his capacity for donation and commitment, at other times it preferred
more petty ways reducing the person to an object to be consumed,
judging and ordering who is worthy of life and who is not.
According to this second logic only a person who possesses, has
success, has information and manipulates it for his own profit,
has value, is someone. Anyone who is not part of this logic is
out of the picture for success, production, quality of life. In
this line persons with mental and/or physical disabilities are
situated.
Persons with disabilities: a sign of contradiction
For they incarnate pain, evoke fragility, denounce the limitations
of the human condition, they are a sign of contradiction and of
scandal. Their difficulties and disharmony are a counter-witness
to the ephemeral fashion of beauty as mere estheticism, but at
the same time they indicate a more profound harmony, revealing,
beyond all phenomenal contingence, the ultimate and founding consistence
of the person as ontological value.
This renders the person with disabilities a "privileged witness
of humanity", a transparent and immediate expression of human
value.
He or she affirms the value of life over and above any determination
of functionality and efficiency.
"The dignity of the person is manifested in all its splendour
when we consider the origin and the destiny of the person: created
by God in his image and likeness to be "a child in the Son"
and the living temple of the Spirit, destined for eternal life
and blessed communion with God" (John Paul II Christifideles
Laici).
This provokes every type of society to serious reflection and
comprehension of such a reality, even when only 'fragments' of
it are seen according to the logic of artificial human categories,
as there could be in persons with disabilities, but who are at
the same time "privileged witnesses of humanity". One
author wrote: "The challenging of learning to know, to be
with, and to care for a person with disabilities is nothing less
than learning to know, to be with, and love God. God's face is
the face of the person with disabilities; God's body is the body
of the person with disabilities; God's being is that of the person
with disabilities" (A. McGill, quoted by S. Hauerwas, Suffering
Presence, 1986).
Reactions
All this leads us to change our views, to overturn the vision
with which we look at persons with disabilities and to ask ourselves
not only how much solidarity they need, but above all to admit
how much they can offer us by witnessing to us the inalienable
value of life itself. In the person with serious handicaps the
existential defeat of disabling sickness becomes an occasion for
identity and transparency of the common humanity we share.
This person is almost by definition and structurally the "poor
one", the one who is in a condition to have to accept that
his need, his dependence on others is shown almost without discretion,
without infringements to mask that non self-sufficiency which
triumphant individualism fails to recognize and which yet, in
the end, belongs to all of us.
Often from the disabled person we avert our eyes and not always
out of banal indifference, but because deep inside, albeit even
unconsciously, they are a threat to our presumed securities, they
provoke to the extent in which they propose and recall the finiteness
by which we are circumscribed and which we desire to exorcise
emphasizing the myths of modernity: progress, science, technology
.
This person is one who cannot keep up with this society of "real
time" of "added value": he is non-productive and,
therefore, useless and residual.
His or her lack of autonomy interrogates us leaving no escape:
either solidarity or rejection and negation.
But solidarity is not a benevolent movement of the heart, a good
feeling: rather, it is both full and objective recognition of
the titular right to citizenship and, and above all, authentic
"co-existence" according to a personal and conscious
choice of responsibility.
In this sense the community cannot limit itself to "assisting"
the person with disabilities, it must instead "take care
of them".
Present reality - discrimination
Even forms of assistance most advanced can correspond to an
intent, more or less latent, to exclude: readiness to invest resources
for qualified care, so that those who are not in top form cannot
intrude on the sophisticated network of a society which must run
swiftly to produce wealth.
"To take care of" means to care also for those who cannot
be cured, to exploit all resources and realize an integrated approach
to the wholeness of the person.
In rich countries the logic of profit and unlimited wellbeing
encourages a "gentle" exclusion of the person with disabilities.
Their rights are proclaimed but the norms, which guarantee them,
are disrespected or badly managed. The person's "diversity"
comes to the fore when it makes news and gives doctors a chance
to make a display. The fatigue of daily living is ignored, perhaps
purposely hidden. "Assistance" has been made more precious;
it often uses prestigious structures, but is in danger, at the
same time, of being no less ghetto making.
In poor countries primary needs, linked with survival of a larger
part of the population, prevail over all. Illiteracy, unemployment,
poverty add desperation to the discrimination which, in the mega-cities
of the so called Third World, cancels all trace of that partial
support which the village community, the clan, are able, elsewhere,
to some extent, to guarantee.
In both rich and poor countries, economic resources for the prevention
of disabling diseases are scarce; indeed progress and technology
demand human sacrifices also in terms of grave biological damage
and disability.
Innovation: possibility to build new relations
If we were truly capable of starting again from the least
ones; if we had the power to make this inconceivable turnabout,
redesigning broad traits and physiognomies of our civilization,
starting from clear vision focused - bearing the harshness of
this exploration - on the person with disabilities as a "corner
stone" or term of comparison for a new social construction,
we would realize that totally different barriers - and not only
architectonic - are questioned by this person's pure and simple
presence among us, the so called "normal-ones".
In fact this limitation, which is not an occasional and contingent
or transitory diminution, but something intimate and structural,
penetrates, offers a source, evoking the unconditioned dignity
of the person.
It invites us therefore, to conceive a co-existence made of trust
rather than suspicion and diffidence, of genuine gratuitousness
rather than mean closing, of immediate freshness in interpersonal
relations, of awareness and serene reciprocal dependence, of joy
of life.
People with disabilities give the strongest push and offer the
greatest, moral and spiritual resources, for a world according
to God's plan. They offer a contribution of hope and love to human
history. They reveal man to man himself: the person is of value
because of what he is, not for what he has, or is able to do (GS
35), especially in a society where what counts are physical beauty,
self-affirmation, search for power and primacy over others. The
persons with disabilities show the creature's dependence on the
Creator with their confidence and their dependence on others and
they affirm this union, which gives life. "For without the
Creator, the creature would disappear" (GS 36).
The person with disabilities is, therefore, a resource, a living
warning, that overturns pain, transforms suffering into a hymn
to life. Acceptance, direct and personal solidarity, active promotion
of assistance, realization of works and initiatives: four moments
which are valid both at the private level of relationships, and
at the public and institutional level - necessary for a concrete
"reform" of our attitude first of all and then of social
and civil structures, regarding conditions of disability.
TESTIMONY
The testimony of a grandfather
A special relationship
The news that our grandchild had been born with serious problems
and was fighting for life, hit us like a hammer. Our first reaction
was a mixture of shock, disbelief, uncontrolled hope that things
would work out, and of grief.
In the weeks that followed we experienced every emotion that grandparents
face in this situation: shock, disbelief, denial, anger, growing
painful awareness and finally acceptance.
Laura had CMV due to a virus and quadriplegia.
Almost immediately we were able to accept Laura for what she was
and not for what she should have been. Information from various
professionals at the university where I worked as librarian and
the books available helped us in this. We became totally involved
with Laura, spending time with her, helping my daughter Kathy
to care for her, or looking after the other two children when
she had to be away from the family with Laura.
We gave emotional support and love with acceptance and confidence.
Our involvement helped Laura to accept her situation, and it also
helped her parents feel less isolated and overcome grief and self-commiseration.
When I take Laura out in the car, I have a wonderful chance to
tell her stories, speak to her and listen, with no interruptions.
These weekly journeys have built a deep, happy bond with her and
given me a role in her development and education. I have come
to realize that Laura understands far more that it would seem.
What we have given, and what I try to give - my wife died when
Laura was 8 years old - is mainly that which all grandfathers
or grandmothers give to a grandchild. First of all she is my grandchild
and secondly my grandchild with special needs.
As a grandfather of a child with disabilities I have received
much more than I have given. I have a special closeness with Laura's
family. I have built closer relationships with my other children
and their families because we all share the experience of Laura's
family. I have acquired a new sensitivity for the needs and demands
of other children with disabilities and their families. I have
developed new appreciation for the talents of professionals and
specialists and a greater ability to help and console parents
and grandparents who experience the arrival of a child with disabilities
in their family. Above all I have acquired a very special friendship
with a very special person, and experienced the "joy and
the closeness that a child with special needs brings to a family".
(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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