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COMMITTEE FOR THE JUBILEE DAY PREPARATION PART TWO THE PERSON WITH DISABILITIES:
The richness of a person with disabilities constantly challenges the Church and society, calling them to open themselves to the mystery they present. The person with disabilities is rich in humanity. Disability is not a punishment; it is a place against the stream where humanity receives the strongest pushes and resources for a world based on solidarity, hope and love. This paper is intended to help discover this truth and reality. It is in this spirit that we entrust this preparation to all of you, in view of the full integration and inclusion of people with disabilities in the life of the Church and society, to valorize 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 20 March 2000 THE PERSON WITH DISABILITIES: 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: 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 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 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”. Committee for the Preparation of the Jubilee Day of the Community with Persons with Disabilities c/o: Opera Don Guanella, Via Aurelia Antica, 446 – 00165 Rome Tel + 39-06-662260 – fax 39-06-6624658
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