2012 SEASON OF ADVENT Advent reflections for every day of the season
The environment of the children with disabilities
ACKNOWLEDGMENTS First and foremost, we would like to thank all those people who contributed to the creation of this booklet of reflection for the season of Advent. And those people are many: first of all, the children who have shared their experiences with us; secondly, their parents for allowing us to publish their children' stories; thirdly, all the contacts that the FMSI has in the provinces, for without them this would not have been possible. We do not want to forget the many others who supported us, joining their efforts to those of the people who needed them. We would like to thank the translators. Likewise, we thank all those who have sent us their answers to the questionnaire to evaluate the Advent booklets published in the past. We believe that the contributions and the modifications we have introduced this year will serve to further focus our reflection during this time. This year the theme of the brochure is children with disabilities, whether physical or mental. Our collaborators have sent quite a few testimonies and since the stories outnumbered the days of Advent, we decided to share all of them and have included some in the appendix. The stories have not been selected, we have included them all. The Convention on the Rights of Persons with Disabilities indicates that this group of people includes those with long‐term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. We hope that these reflections will help us get a little closer to these people who suffer when a form of disability prevents them from participating fully in activities that others can do normally. Let us include them in our prayers and thus seek to better understand their lives. Because of this theme, this year we will use two UN international conventions for the purpose of our reflection: the Convention on the Rights of Children and the Convention on the Rights of Persons with Disabilities. We propose some of their articles for our knowledge and reflection.
We also hope that the testimonies offered will help us consider these people with disabilities even more, be able to respect, help and be closer to them, as well as share our lives with their own, and especially to help them be integrated in society. Manel Mendoza. Note. Source of the Psalms: the New American Bible, Revised Edition (NABRE). 4
ADVENT The word "Advent" comes from Adventus, which means coming. This liturgical season, which lasts four weeks, ends on December 24, and is linked to Christmas and Epiphany. The meaning of Advent is to revive Catholics while waiting for the Lord to come. Advent can be divided into two phases: from the first Sunday to December 16, a distinctly eschatological phase, looking at the Lord's coming at the end of time; from December 17 to 24 ‐ some say this is the "Holy Week" of Christmas ‐ this phase aims at preparing more explicitly the coming of Jesus Christ. Origin It is not possible to determine exactly when the Advent celebration was first introduced in the Church. The preparation for the feast of Christmas could not be before the celebration of Christmas was introduced, and there is no evidence of this existing before the end of the fourth century, when it was celebrated within the Church, for some, on December 25, while for others, on January 6 (Duchesne). In the Acts of a synod of Saragossa (A.D. 380), the fourth canon prescribes that from December 17 to the feast of the Epiphany everyone should be present in the Church. There are some homilies, probably most of them by St. Caesarius, Bishop of Arles (502‐542), in which a "preparation before Christmas" is mentioned. However, judging from the context, seems that there is no general law on this matter. A synod that took place in Mâcon, Gaul in A.D. 581, in its ninth canon stated that from November 11 until Christmas, the Sacrifice be offered according to the Lenten rite on each Monday, Wednesday, and Friday of the week. The Gelasian Sacramentary indicates five Sundays for the season. That number was reduced to four by Pope St. Gregory VII (1073‐85). The collection of homilies of St. Gregory the Great (590‐604) begins with a sermon for the second Sunday of Advent. Several synods have created canons on the fast days to be observed during this time. Some began on November 11 or 15, and others with the autumnal
equinox. Other synods forbade the celebration of marriages. (Francis Mershman) Time of Advent: Time of Mary In the liturgical year, Advent is the Marian time par excellence. Paul VI had expressed that with great authority in his Marialis Cultus, nn. 3‐4. Historically, the memory of Mary in the liturgy has emerged with the reading of the Gospel about the Annunciation the Sunday before Christmas, which has rightly been called Marian Sunday. Today, Advent has fully recovered this meaning with a number of Marian elements in the liturgy, which can be summarized as follows: From the earliest days of Advent there are elements that recall the expectation and reception of the mystery of Christ. The Solemnity of the Immaculate Conception is celebrated as a "radical preparation for the coming of the Saviour and happy beginning of the Church without spot or wrinkle." (Marialis Cultus 3) On weekdays from 17 to 24, the liturgical role of the Virgin is a major characteristic of the biblical readings; the third preface of Advent reminds of the Mother waiting. I. Calabuig points out some of the titles we give to Our Lady of Advent: "Full of grace"; "Blessed among women"; "Virgin"; "Servant of the Lord"; “Daughter of Zion”; “The Virgin of the Fiat”; “Fecund Virgin”; “The Virgin who listens and embraces”. The Advent Wreath It originated in a European pagan tradition of lighting candles during the winter to represent the fire of the sun god, to have him return with its light and heat during the winter. The wreath has a variety of symbols:
Circular shape: the circle has no beginning or end. It is a sign of God's eternal love, which has no beginning or end; and it is also a sign of our love for God and our neighbour, a love that should never end. Green branches: green is the colour of hope and life, and God wants us to wait for his grace, for the forgiveness of sins and the eternal glory when our lives are over. Four candles: they remind us of the darkness that comes from the sin that blinds man and pulls him away from God. The wreath has four candles and they are lit one at a time, during the four Sundays of Advent to pray in the family. Red apples can be added, representing the fruits of Eden and sin; however, they also remind us of the promise of salvation. PRAYERS FOR LIGHTING THE ADVENT CANDLES First week O Emmanuel, Jesus Christ, desire of every nation, Savior of all peoples, come and dwell among us. Third Week O Key of David, Jesus Christ, the gates of heaven open at your command, come and show us the way to salvation. 7
Second Week O King of all nations, Jesus Christ, only joy of every heart, come and save your people.
Fourth Week O Wisdom, holy Word of God, Jesus Christ, all things are in your hands, come and show us the way to salvation.
INTRODUCTION People with disabilities are the largest existing minority. Currently, around 10% of the world population live with a disability. Disability is a limitation in the functions, and the level of disability depends on the possibilities that your environment offers you to develop correctly. But what does living with a disability entail? Mainly the deprivation of basic human rights, fundamental to a good quality of life, such as access to health care, as well as to inclusive and quality education, vocational training, the right to actively live in a plural society and to leisure, just to mention a few. Disabilities have a tremendous impact on all the above areas, especially when it comes to children. According to some studies, people with disabilities, have a greater chance of falling into the vicious cycle of poverty, and that extends to their families. Health in general, and the tools they need to improve their mobility, hearing, etc. in particular, are too expensive for low‐income families. Quite often, it is thanks to the action of certain NGOs or associations, that these people obtain such necessary tools to improve their lives. Children with disabilities have been considered for centuries a burden to society, as it was believed that they were not educable, and therefore they did not have the opportunity to become independent and develop like the rest of humans. They were relegated to doing household tasks, the same tasks that today we would consider semi‐slavery. Or they would live in a residential home, receiving health care exclusively. Fortunately, things are changing, even if there are still many obstacles to overcome in those countries that are still behind as far as disability is concerned. Despite the Convention on the Rights of Persons with Disabilities, the Millennium Development Goals, as well as the firm intention expressed by the statement "Education for All", disability is the primary cause of social exclusion in the world. Therefore, such elements as inclusive education become very necessary, especially in those rural areas of the world where the only possible option is an educational centre per village and schooling depends on the training and availability of the teachers who decide to take on this professional challenge.
Since there is still a long way to go, the action of both governments and NGOs will be indispensable to help encourage the development of projects related to the education and training of people with disabilities, so that in a not too distant future hopefully these people will not be discriminated against anymore, and instead enjoy a full and independent life. (Núria Trégon)
December 2 First Sunday of Advent Marist Anniversary: 1915 ‐ first foundation in Morocco. Today’s Readings: Jer 22:14‐16. I will raise up for David a legitimate offspring. 1 Thess 3:12‐4:2. May the Lord strengthen your hearts for Jesus' return. Lk 21:25‐28, 34‐36. Your liberation is near at hand. It's true that I feel very happy to be alive. I am the centre of attention in my family, as well as with my schoolmates. I receive from my family all the support, love and affection that a child could need. I am welcomed with love by my friends at school, and they make me feel like I belong. My babysitter (Susana) treats me well, like I was really her daughter. I lead a normal life. In my neighbourhood I have friends who are between 8 and 10 years old. We play handball, basketball and dominoes. At school my friends and I share classes and games. I have never felt discriminated against or left out; on the contrary, I feel that I am the centre of attention, because they are always looking Ana Alexandra Romero out for me. Flores. Lima, Peru Convention on the Rights of the Child: States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self‐ reliance and facilitate the child's active participation in the community. (Art. 23.1) From psalm 48: God makes his dwelling among men. 10
Great is the LORD and highly praised in the city of our God: His holy mountain, fairest of heights, the joy of all the earth, Mount Zion, the heights of Zaphon, the city of the great king. What we had heard we have now seen in the city of the LORD of hosts, In the city of our God, which God establishes forever. We ponder, O God, your mercy within your temple Like your name, O God, so is your praise to the ends of the earth. Your right hand is fully victorious. Mount Zion is glad! The daughters of Judah rejoice because of your judgments! Go about Zion, walk all around it, note the number of its towers. Consider the ramparts, examine its citadels, that you may tell future generations: That this is God, our God for ever and ever. He will lead us until death. Intention: We pray that Jesus and Mary will make us more aware of accepting people with disabilities. Prayer of Anita Romero Flores: Saint Marcellin, I ask you to enlighten people, that you touch their hearts, so that when they see people with a disability they will not ignore them. Thank you for the people I know in my school who have big hearts.
December 3 Monday of the First Week of Advent Saint Francis Xavier, priest International Day of Persons with Disabilities Marist Anniversary: 1956 ‐ Departure of the first Brothers for Bolivia. Today’s Readings: Isa 2:1‐5. The Lord gathers all the nations into the eternal peace of the Kingdom of God. Mt 8:5‐11. Many will come from the east and the west to the kingdom of heaven. Mrs. Roseli, mother of Ederson and Fabiano, tells us that her sons need special attention since they don't have a sense of danger and on a number of occasions she found Ederson in risky situations. She also explains that she has to stimulate her sons in basic activities, due to their difficulty in communicating, in personal hygiene, and in feeding themselves, among others. She receives assistance from the “Beneficio de Prestación Continua” of the federal government (BPC) and accompaniment for the family with the care of her sons. She doesn't visit her neighbours because they can't understand the way her sons act. The neighbours say, among other things, that her children are terrible, since they both end up hurting themselves. She told us it takes a lot of patience and dedication to be attentive to their medication schedule, to be aware of the ease with which the boys get excited and to help them feel better. The boys attend the Special Education Services (AEE). Ederson and Fabiano 10 and 7 years old, Brazil She thinks the teachers could motivate her sons more in their daily activities. She stresses that there is a lack of understanding of the limitations of her sons on the part of some people, which causes prejudices, and in some cases, feelings of shame. 12
Convention on the Rights of the Child: States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child's condition and to the circumstances of the parents or others caring for the child. (Art. 23.2) From psalm 18: Morning, with its light, and the reborn day, with its brightness, evoke in us the beginnings of creation. The heavens declare the glory of God; the firmament proclaims the works of his hands. Day unto day pours forth speech; night unto night whispers knowledge. There is no speech, no words; their voice is not heard; A report goes forth through all the earth, their messages, to the ends of the world. The law of the LORD is perfect, refreshing the soul. The decree of the LORD is trustworthy, giving wisdom to the simple. Let the words of my mouth be acceptable, the thoughts of my heart before you, LORD, my rock and my redeemer. Intention: We pray for parents whose children have disabilities. Prayer of Fabiano with the help of his mother: Thank you, God, for the day, for the night, for the cold and for supper. God, send your army of angels to protect my family. 13
December 4 Tuesday of the First Week of Advent Saint John Damascene, priest and doctor Marist Anniversary: 1889, opening of the first Marist school in Colombia. Today’s Readings: Is 11: 1‐10. The spirit of the Lord will rest on him. LK 10: 21‐24. Jesus was filled with the joy of the Holy Spirit. My name is Elfreda Tabora and I am 7 years old, attending Arawa Elementary School. I was naturally born with a hearing problem on my right ear. In school I sit in the front of the class all the time. But I still have hearing problems. This problem discourages me because I always have two other problems that come with it. The first is the struggle of comprehending anything not heard properly and the second is fear of being shamed. Otherwise I like school, particularly Mathematics and my good teacher. I am lucky to have good parents. Elfreda Tabora Because of my disability they had taken me to 7 years old, Papa New Guinea Callan Services (A Catholic Diocese Owned Disable Peoples & Children Therapy & Learning Centre). Florence, a worker, there has become my teacher and helper. She has taught me how to read sign language and she had also taught my parents sign language as well. For me, it’s still a problem because I have to problem because I have to deal with hearing first all the time and failure to thais discouraging. So far in my life, it has not been easy for me at school, at home and with friends. I have tried so hard to keep my ears open as much as possible to avoid getting lost. Hearing aids are far too expensive for my family. Therefore, it has been my battle with my disability, and I prayer every time that my ear have proper attention so that I can hear normally. 14
Convention on the Rights of the Child: Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development. (Art. 23.3) From psalm 19: You are the light and the morning star, o Christ, our Lord. The heavens declare the glory of God; the firmament proclaims the works of his hands. Day unto day pours forth speech; night unto night whispers knowledge. There is no speech, no words; their voice is not heard; A report goes forth through all the earth, their messages, to the ends of the world. He has pitched in them a tent for the sun; it comes forth like a bridegroom from his canopy, and like a hero joyfully runs its course. From one end of the heavens it comes forth; its course runs through to the other; nothing escapes its heat. Intention: We pray for all the children who do not have access to what is necessary to improve their situation of disability. Prayer of Elfreda Tabora: Heavenly Father, help me to hear properly with my ears so that I may hear clearly the words spoken by other people. I ask you to help other children who are like me. Amen 15
December 5 Wednesday of the First Week of Advent International Day of Volunteers Today’s Readings: Is 25: 6‐10ª. The Lord invites to his feast and wipes away the tears of all. Mt 15: 29‐37. The Lord has compassion on the crowd and multiplies the loaves. My name is Fidelis Motou and I am 16 years old. I am in Grade 8 at St. Joseph’s Primary School ‐ Bairima. In 2000, when I was about 5 years old, I accidentally fell from a cocoa tree picking cocoa’s with my family during the peak harvest season for cocoa. My parents quickly carried me down to Loloho; a special military base where Australian & New Zealand Peace Monitoring Group were based. They quickly responded by putting me on a helicopter to be flown to Buka Hospital (180km away from home). When I woke up, I realized that my right hand and feet were not moving. I quietly rolled tears for my leg and arm. I am lucky that my parents were there to give me the love Fidel Motou, 16 years old, and care. As I grew, I realized that somehow I had to make my left leg and arm become my helpers. Papua New Guinea I struggled on my own to find ways to exercise my left leg and arm. I struggled on my own to find ways to exercise my left leg and arm. For my arm, I was mainly using a small branch and swinging it against a patch of weed. For my left leg I played my favourite sport soccer to gain coordination. Best of all I like school but I have struggled so much to improve my hand writing so that my work I clear for reading. Sometimes, I wish other people would be able to help me learn ways to overcome my struggle because I am still a young boy struggling with two disabilities. Convention on the Rights of the Child: States Parties shall promote, in the spirit of international cooperation, the exchange of appropriate information in 16
the field of preventive health care and of medical, psychological and functional treatment of disabled children, including dissemination of and access to information concerning methods of rehabilitation, education and vocational services, with the aim of enabling States Parties to improve their capabilities and skills and to widen their experience in these areas. In this regard, particular account shall be taken of the needs of developing countries. (Art. 23.4) From psalm 98: All the ends of the earth have seen the salvation of our God. Sing a new song to the LORD, for he has done marvellous deeds. His right hand and holy arm have won the victory. The LORD has made his victory known; has revealed his triumph in the sight of the nations, He has remembered his mercy and faithfulness toward the house of Israel. All the ends of the earth have seen the victory of our God. Shout with joy to the LORD, all the earth; break into song; sing praise. Sing praise to the LORD with the lyre, with the lyre and melodious song. With trumpets and the sound of the horn shout with joy to the King, the LORD. Intention: We pray for all the persons who provide free and disinterested help to the persons with disabilities. Prayer of Fidel Motou: God our Father, I ask you to help those who are blind and cripple. Help them to be strong and with clear mind so that they may be heal again. Amen.
December 6 Thursday of the First Week of Advent Saint Nicholas, bishop Today’s Readings: Is 26: 1‐6. Let the upright nation who are faithful enter in. Mt 7: 21. 24‐27. The one who carries out the will of the Father will enter the Kingdom of Heaven. Hieng Tom, almost 18 years old and Sock Ann 8 year old are brothers. Both of them are victims of muscular dystrophy also known as MD. Hieng Tom, since the age of four years has progressively lost weight and muscles to the extent that he has to be tied to a window frame so that his weak body can stay steady. Sock Ann until a year ago was able to walk and run but has recently paralyzed and can only stand by holding on to something. His body shows clear signs of wasting away. Both Hieng Tom and Sock Ann live in an old tattered wooden structure situated in Watt Pahir, a suburb in Pailin, Cambodia, with their forty year old mother Hieng Pov and their sister Pisey who is 15 years old. Hieng Tom longs to go to school, study and participate in all activities like his contemporaries but he cannot do so due to his Ann Sock and Hieng Tom profound degree of disability. The predicament of these two brothers and their family is not Cambodia known to many people for the fear of being labelled as having a bad “karma’’ and consequently seen in the eye of many as ‘’a cursed family’’. The condition of the two boys has compelled their mother who is the only bread winner of the family to abandon her mobile fruits selling business in order to take care of them. This has had a serious ramification on the family’s finances to a very pathetic extent. 18
Convention on the Rights of the Child: States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services. (Art. 24.1) Psalm 1,1‐6: Life is like a mirror which reflects what we see. Blessed is the man who does not walk in the counsel of the wicked, Nor stand in the way of sinners, nor sit in company with scoffers. Rather, the law of the LORD is his joy; and on his law he meditates day and night. He is like a tree planted near streams of water, that yields its fruit in season; Its leaves never wither; whatever he does prospers. But not so are the wicked, not so! They are like chaff driven by the wind. Therefore the wicked will not arise at the judgment, nor will sinners in the assembly of the just. Because the LORD knows the way of the just, but the way of the wicked leads to ruin. Intention: We pray for all the families who because of their financial situation cannot satisfy their needs for medical care. Prayer of Hieng Tom: Oh God, I beg you to make me strong and well. Help me and all the members of my family. Bless my mother who takes care of us. Give her peace and good health. Amen 19
December 7 Friday of the First Week of Advent Saint Ambrose, bishop and martyr Today’s Readings: Isa 29:17‐24. On that day, the blind will see. Mt 9:27‐31. Jesus cures two blind men who believe in him. My name is Hugo. I have never felt discriminated against because of my deficiency, hydrocephalus. My family is proud to go out with me to places like malls, grocery stores, family centres, to name just a few. I have never felt the pain of discrimination. It has never bothered me. I wanted to participate in certain sports, but I know my limitations. My parents and my friends support me. I lead a normal life. Despite my��disability, I am happy.
Hugo Junior Jardín 13 years old, Brazil Convention on the Rights of the Child: States Parties shall pursue full implementation of this right and, in particular, shall take appropriate measures: (a) To diminish infant and child mortality; (b) To ensure the provision of necessary medical assistance and health care to all children with emphasis on the development of primary health care; (c) To combat disease and malnutrition, including within the framework of primary health care, though, inter alia, the application of readily available technology and through the provision of adequate nutritious foods and clean drinking‐water, taking into consideration the dangers and risks of environmental pollution. (Art. 24.2‐a‐b‐c) 20
Psalm 8: Whoever senses that life is full of God, in each small thing he will look for and find God's presence. O LORD, our Lord, how awesome is your name through all the earth! I will sing of your majesty above the heavens with the mouths of babes and infants. You have established a bulwark against your foes, to silence enemy and avenger. When I see your heavens, the work of your fingers, the moon and stars that you set in place— What is man that you are mindful of him, and a son of man that you care for him? Yet you have made him little less than a god, crowned him with glory and honour. You have given him rule over the works of your hands, put all things at his feet: All sheep and oxen, even the beasts of the field, The birds of the air, the fish of the sea, and whatever swims the paths of the seas. O LORD, our Lord, how awesome is your name through all the earth! Intention: We pray for all the children and adults who materially and spiritually accept their disabilities. Prayer of Hugo Junior Jardín: Lord, thank you for my family and my life. I ask the Lord's help in finding a cure. So that this life may continue getting better each day. Thank you, Lord.
December 8 Solemnity of the Immaculate Conception of the Blessed Virgin Mary Saturday of the First Week of Advent Marist Anniversary: 1942, Consecration of the Institute to the Immaculate Heart of Mary. 1950, first foundation in Indonesia. Today’s Readings: Gen 3:9‐15, 20. I will put enmity between you and the woman, and between your offspring and hers. Eph 1:3‐6, 11‐12. He chose us in Christ before the foundation of the world. Lk 1:26‐38. Greetings, favoured one! The Lord is with you. I was born in Ceilandia, adjacent to Brasilia‐DF (Brazil). I am a student at the Special Education Centre Number 11. Presently I am registered in the fourth grade of special education and my teacher's name is Celia. We are 20 in the class. I like my teacher very much, but I have some complaints about my school: I find that it lacks recreational and physical‐sports activities that it Iago Tavares Rodrigues could implement; I also believe it should have 17 years old, Brazil more information technology activities, since the school already has a computer lab. I live with my family: my mother Claudenilia, my 24‐year‐old brother Brainer and my 14‐year‐old sister Emily. My father, Pablo, is separated from my mother and I don't see him much. My sister and I entered the “Marist Youth Circuit Centre” in Ceilandia in the second semester of 2010, in a course of basic information technology. After only a few weeks in this course, we were transferred to the “Education for Life” project, which was also held at the Marist Centre and directed by a teacher by the name of Alessandra. The time I spent in the basic information technology course was very important to me because it made me aware that I had a lot to learn such as learning to read better in order to do many things and to better utilize the computer. 22
In the "Education for Life" project I adapted well and above all made great advances in spite of my difficulties. Miss Alessandra succeeded in dealing with the prejudices of my fellow students, I felt part of the group, and I joined the Workshops of Capoeira at the Marist Centre, despite my motor skill difficulties. I'm very satisfied with the progress I've made over the past two years, because I'm learning a lot here. At the beginning I didn't know the alphabet, but through my teacher Alessandra's efforts, I can put together words and sentences; I adapted very well to the routine at the Marist Centre. It is my favourite place to be and I would like to spend more time there. If they ask me what I like best about the school or about the Marist Youth Circuit Centre, I would tell them with certainty that I prefer the Youth Circuit, because here the people treat me with respect, as an equal, as no different from the others. At the school I am always alone and my classmates call me by my last name and I don't like that. I know that here at the Marist Centre I can get better every day. Convention on the Rights of the Child: States Parties shall take appropriate measures (d) To ensure appropriate pre‐natal and post‐natal health care for mothers; (e) To ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition, the advantages of breastfeeding, hygiene and environmental sanitation and the prevention of accidents; (f) To develop preventive health care, guidance for parents and family planning education and services. (Art. 24 d, e, f) Magnificat: Mary is God's masterpiece, affectionate and close to us. Mary is God's new song in the world. My soul proclaims the greatness of the Lord; my spirit rejoices in God my saviour. For he has looked upon his handmaid’s lowliness; behold, from now on will all ages call me blessed. The Mighty One has done great things for me, and holy is his name. His mercy is from age to age to those who fear him. He has shown might with his arm, 23
dispersed the arrogant of mind and heart. He has thrown down the rulers from their thrones but lifted up the lowly. The hungry he has filled with good things; the rich he has sent away empty. He has helped Israel his servant, remembering his mercy, according to his promise to our fathers, to Abraham and to his descendants forever Intention: We pray for the centres that serve the needs of children and youth with disabilities. Prayer of Iago Tavares Rodrigues: You ask yourself: Where can I find the source of living water? It is in the mysterious presence of a love. The most important thing is to realize that God loves you. That's where the source is. His love is presence and forgiveness. He love you, even if you do not respond to his love. The day will come when you will say to him: I love you, possibly not as much I would wish to, but I love you. 24
UNICEF condemns the lack of protection for millions of African children with disabilities The United Nations Fund for Children (UNICEF) today denounced the lack of protection for millions of children with disabilities in Africa, and urged families and governments to do more to end discrimination. Nairobi, June 16. ‐ The United Nations Fund for Children (UNICEF) today denounced the lack of protection for millions of children with disabilities in Africa, and urged families and governments to do more to end discrimination. In a press release issued in Addis Ababa on the occasion of the Day of the African Child, celebrated today, Unicef claims that between 5% and 10% of all children in the continent grow up with a disability. These disabilities are typically caused by various diseases, such as poliomyelitis, measles, meningitis and cerebral malaria, as well as prenatal and neonatal inadequate health care services. “Children living with disabilities continue to be the most excluded among all groups of children in Africa. Only a small portion of them are in school, and far fewer receive the adequate inclusive education they need,” said the Chief of UNICEF’s Disability Unit, Rosangela Berman Bieler. UNICEF condemns also that 25 out of 55 African countries have not yet ratified the Convention on the Rights of Persons with Disabilities, which stipulates that children with disabilities should be protected against all forms of discrimination, and they should have access to education and health services. A 2011 study undertaken by UNICEF in Madagascar, for example, found that schooling among children with disabilities is very low: only 11% of children with disabilities attend primary schools, with school attendance among girls much lower. Almost all the children interviewed reported that they were ridiculed by their peers, thus increasing the risk of dropping out of school. The Fund also makes special mention of children with albinism in Tanzania, one of the countries with the largest populations of persons with albinism in the world, where these children are not only excluded from society, but also victims of violence. The Day of the African Child commemorates the march of June 16, 1976 in Soweto (South Africa), in which thousands of black students took to the streets to protest the inferior quality of education they received compared to that of white children. This initiative sparked a wave of protests that killed hundreds of people. Source: lainformación.com. 16/06/2012 25
December 9 Second Sunday of Advent Marist Anniversary: 1879, Death of Brother Louis Marie, second Superior General of the Institute. Today’s Readings: Bar 5:1‐9. God will show his splendour. Phil 1:4‐6. 8‐10. May you come to the day of Christ spotless and irreproachable. Lk 3,1‐6. All will see the salvation of God. My name is Jaime Cruz Juscamaita. I am 17 and I was born with Down's syndrome. Since third grade I have been a student at Colegio Champagnat and now I am in the third year of secondary school. I am happy. Thanks to my family for giving me all the support I need; to my father, for correcting me when necessary; to my mother, for her love and dedication; to my older sister, for what I learn from her. Thanks to my teachers at Colegio Champagnat, for their understanding and teaching; thanks to my teachers at Kallpa for their support and understanding. All my achievements are thanks to Jaime Cruz Juscamaita my family who have made me a cooperative, mature, 17 years old, Peru and responsible person. As long as I can remember, I am always involved in different activities, like now. In the morning I am at school; in the afternoon I practice swimming, surfing, theatre and piano. I am a good swimmer; I have competed in the Special Olympics and have won gold medals in different events. My life at school is super, my classmates accept me as I am, they call me to play basketball during recess, to chat, to form study groups, to eat lunch together, to share a room on field trips. Earlier I was in “GAMA” and now I participate in “MARCHA”; it has helped me to get more involved with my friends and to come closer to God and to Marcellin Champagnat, to believe in his word and to trust more in God. My exams are different from those of my classmates, which is good for me since it helps me to prepare myself to be better. 26
I have many dreams I want to carry out: to finish school, to graduate and to go on to a university to study gastronomy; I also want to continue studying music, theatre, swimming and surfing. Convention on the Rights of Persons with Disabilities: Persons with disabilities include those who have long‐term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (Art. 1) Psalm 22, 1‐6: We need to recreate God in our life, to purify our image of Him. He has set me in a place of pasture. The LORD is my shepherd; there is nothing I lack. In green pastures he makes me lie down; to still waters he leads me; he restores my soul. He guides me along right paths for the sake of his name. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff comfort me. You set a table before me in front of my enemies; You anoint my head with oil; my cup overflows. Indeed, goodness and mercy will pursue me all the days of my life; I will dwell in the house of the LORD for endless days. Intention: We pray for the school and out‐of‐school centres that integrate people with some type of disability. Prayer of Jaime Cruz Juscamaita: Thank you, Lord, for all you have given me, for blessing me and my family. 27
December 10 Monday of the Second Week of Advent International Day of Human Rights (UNO) Marist Anniversary: 1984, First Marist foundation in Kenya. Today’s Readings: Is 35:1‐10. God comes in person and he will save us. Lk 5:17‐26. Today we have seen wonderful things. My name is Jesse McCormack. I am 14 years old and I attend St Augustine’s College in Cairns. I live in Cairns with my mum, dad and little brother. I was born without my right hand. Mum and dad found out about my missing hand when mum was 20 weeks pregnant. My disability was caused by Amniotic Band Syndrome and I was the one in 500,000 to have it happen to me. Amniotic Band Syndrome occurs when elastic type bands get Jesse McCormack wrapped around a limb and stops its growth. 14 years old, Australia Other than my limb difference, I am a normal healthy boy who loves watching TV, playing my xbox and talking on Facebook. When I started preschool I had my helper which was a prosthesis. It wasn’t long before I worked out that I didn’t need it. However when I started school I did have issues with the monkey bar. I really had trouble getting from one side to the other and I used to come home upset about it. My family found something to protect my arm so I could have grip to get from one side to the other. I was happy once I could get from one side to the other without falling off. When I was nine I obtained a classification as an Athlete with a Disability (AWD) and because of my disability I have had the opportunity to compete at lots of different athletics and cross country events in different places in Australia. I have AWD Australian records for my classification in 800 and 1500 metre races, triple jump and javelin. When I was in primary school, the principal always made a big deal of how I was a good example for the other students when I could train and compete but also be organised to get my homework done. This recognition gave me lots of confidence and the principal’s encouragement and support of me was great. I also was school captain at my primary school. There are some tasks that are hard to do with one hand. 28
Recently when I was on holiday, I didn’t think I was going to be able to wakeboard but after heaps of attempts and lots of patience and encouragement from my dad, I finally found a way to hang on and keep my balance so I could wakeboard at the dam. This was an important achievement for me and wasn’t easy but I felt great when I finally did it! I do get a bit shy when I am around new people but really I prefer people to ask me what happened to my hand rather than just stare or whisper. So far in my life, being born without my right hand has not really stopped me doing what I want. Having one hand just makes me more determined to find a way to achieve what I want. Convention on the Rights of Persons with Disabilities: States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children. (Art. 7.1) Psalm 23, 1‐6: Mary, the woman searching for God, offers us, humanity, to God made Child. The earth is the LORD’s and all it holds, the world and those who dwell in it. For he founded it on the seas, established it over the rivers. Who may go up the mountain of the LORD? Who can stand in his holy place? The clean of hand and pure of heart, who has not given his soul to useless things, what is vain. He will receive blessings from the LORD, and justice from his saving God. Such is the generation that seeks him, that seeks the face of the God of Jacob. Intention: We pray that all the persons with disabilities may have the courage to overcome their limits. Prayer of Jesse McCormack: God bless my family and God bless me. 29
December 11 Tuesday of the Second Week of Advent Today’s Readings: Is 40:1‐11. Internally, for when Jesus returns. Mt 18: 12‐14. God does not wish even one of these little ones to be lost. I am Kavindu Nidushan Udapola , a boy of 16 years and I’m a Srilankan. Right from my birth I am deaf and now I find it hard to communicate. As a result I do not understand others and that makes me frustrated. I am able to communicate with those who know the sign language. Apart from my deaf friends and my teachers, only a few know the sign language. When I am exposed to the society people can’t guess that I am deaf as I look quite normal. But once they Kavindu Nidushan Udapola realize my disability, they at times do not accept 16 years old, Sri Lanka me. This makes me sad. Of course my parents and teachers love me and help me in finding information that I need, assist me to gain, encourage me to take part not only the formal curriculum but even in extra‐curricular activities. I am in the school band and I take part in many associations. My hearing impairment disturbs me in my day to day life. At times it hinders me dealing with others. Sometimes I cannot enjoy parties. In spite of all these obstacles, I have decided to go ahead winning all the challenges because I know I can be a great person and I know that I am wanted and loved. Convention on the Rights of Persons with Disabilities: In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration. (Art. 7.2) Psalm 24, 4‐14: When God reveals to us his Face of Father‐Mother, only the deepest awe and gratitude are possible. 30
Make known to me your ways, LORD; teach me your paths. Guide me by your fidelity and teach me, for you are God my saviour, for you I wait all the day long. Remember your compassion and your mercy, O LORD, for they are ages old. Remember no more the sins of my youth; remember me according to your mercy, because of your goodness, LORD. Good and upright is the LORD, therefore he shows sinners the way, He guides the humble in righteousness, and teaches the humble his way. All the paths of the LORD are mercy and truth toward those who honour his covenant and decrees. or the sake of your name, LORD, pardon my guilt, though it is great. Who is the one who fears the LORD? God shows him the way he should choose. He will abide in prosperity, and his descendants will inherit the land. The counsel of the LORD belongs to those who fear him; and his covenant instructs them. Intention: We recall in our prayer all the deaf or deaf and dumb people who cannot fully take part in society. Prayer of Kavindu Nidushan Udapola: Lord Jesus I thank you for the beautiful gift of life you have given me. You know Lord that I am differently abled. That is also a blessing in disguise. Help me to overcome all the challenges and please take care of me. May you grant me the strength to study well. Forgive for the times I get discouraged and fall. I place my future into your precious hand so that you may lead me to the destination that you have earmarked for me. Amen. 31
December 12 Wednesday of the Second Week of Advent Our Lady of Guadalupe Today’s Readings: Is 40: 25‐31. The Lord almighty gives strength to the weary. Mt 11: 28‐30. Come to me all you who are weary. My name is Claro Tungul and I am 18 years old and live in Sydney, Australia. I come from a Filipino background. I have visual impairment, which means I have problems seeing like most people. I was born with Glaucoma as well as Microptalmia. My left eye can only detect light, and I can only see at a very short distance with my right eye. Because of my disability, I find it extremely difficult to do what others take for granted, such as reading, writing on paper and drawing. There is no treatment for my condition. I am very lucky to get support from organizations to assist me with transport and mobility. At school my teachers go out of their way to make my school life easier by scanning my school work from paper to electronic copy, acquiring digital and audio textbooks, Claro Tungul providing me with a reader/writer for exams and 18 years old, Australia encouraging me to do my best. And I cannot forget my parents who are always there for me to support me whenever I need anything. Even though I have difficulties due to my disability, I find other ways to do everyday things. At school, I use other students as reader/ writers to help me with exams and day to day class work. I use a laptop as my pen and paper, I use zoom software in order to help me view the screen. I am also able to travel independently from home to school and to TAFE, which is usually a 40 minute journey by train and walking. My life’s passion is music and I love to play many instruments such as the piano, guitar, saxophone and drums. Convention on the Rights of Persons with Disabilities: States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given 32
due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age‐appropriate assistance to realize that right. (Art. 7.3) From psalm 25: Humility is pleasing to God, “because God is Truth, and humility is to walk in truth” (Saint Teresa). Judge me, LORD! For I have walked in my integrity. In the LORD I trust; I do not falter. Examine me, Lord, and test me; search my heart and mind. Your mercy is before my eyes; I walk guided by your faithfulness. I do not sit with worthless men, nor with hypocrites do I mingle. I hate an evil assembly; with the wicked I do not sit. Lord, I love the refuge of your house, the site of the dwelling‐place of your glory. Do not take me away with sinners, nor my life with the men of blood, In whose hands there is a plot, their right hands full of bribery. But I walk in my integrity; redeem me, be gracious to me! My foot stands on level ground; in assemblies I will bless the LORD. Intention: We pray for all the associations that give help to persons with any type of handicap. Prayer of Claro Tungul: Dear God, Thank you for everything you have provided in my life, especially the continuous support I get from the people around me. Thank you for my talents, especially music. Thank you also for my family who is always there for me, and good friends, who don’t treat me differently just because I have a disability. Amen. 33
December 13 Thursday of the Second Week of Advent Saint Lucy, virgin and martyr Today’s Readings: Is 41:13‐30. I am your redeemer, the Holy One of Israel. Mt 11:11‐15. There is no one born greater than John the Baptist. My disability does not affect me at all. There are difficulties that, certainly, are many, accessibility being the most complicated one. An example is in the school whose classroom doors have an opening that complicates my entering, but the worst thing is when it rains and the activity is held in a classroom that does not have covered access and I cannot participate; I am always aware of my disability, the wheelchair chair doesn't fit to the table and the desk is very high, but there's always someone to help me. Another difficulty is in my own home, caused by the financial situation. There is no accessibility so I cannot move. The bathroom is the Jordana Cristina Coimbra most difficult part. Regarding economic aid, we receive some from the government that helps us Brazil with the medicines. The human support encourages me, the solidarity that comes through friends and educators to be more integrated and also to move about. As far as overcoming difficulties, I see life as a gift, a present, so I always try to see the bright side of things. Suffering some form of discrimination is something that I have experienced. I remember three occasions: when a colleague called me disabled; when a teacher who is no longer at the school told me that I would not be able to do anything in life because of being in a wheelchair; and when my grandmother parked the car in an empty space and offended us by saying her image would be stained by a wheelchair being next to her car. All this caused me great confusion. Convention on the Rights of Persons with Disabilities: States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others. ( Art. 10) 34
From psalm 26: Who will give us hope? Where will we find the spirit to live? On which door will we knock? We will ask the mystics to speak to us of the sweetness of the Lord. The LORD is my light and my salvation; whom should I fear? The LORD is my life’s refuge; of whom should I be afraid? One thing I ask of the LORD; this I seek: To dwell in the LORD’s house all the days of my life, To gaze on the LORD’s beauty, to visit his temple. I believe I shall see the LORD’s goodness in the land of the living. Wait for the LORD, take courage; be stout‐hearted, wait for the LORD! Intention: We pray for a lifting of the barriers that impede people with disabilities from leading a normal life. Prayer of Jordana Cristina Coimbra: Lord, my God... Today I have discovered that despite struggles and difficulties, you are always at my side, like a father who would never abandon his child. I know that you will never give me a burden that I will not be able to carry. I ask that you always protect my family, my teachers and my friends, because the help me see that my life is worth the daily pain. 35
December 14 Friday of the Second Week of Advent Saint John of the Cross, priest and doctor Today’s Readings: Isa 48:17‐19. If you had only heeded my commandments. Mt 11:16‐19. You listen neither to John nor to the Son of Man. I am a boy who was born with spina bifida, but I don't consider it a disability. Being in a wheelchair doesn't affect me at all, except when my little brother asks me to lend it to him so he can play with it. I have to tell him that it is not a toy but my means of transportation and I need it to move around. My family is my biggest support. My parents are always with me. I also have godparents who help me when my parents are unable to go with me. Even my mischievous little brother is always is willing to cooperate with me. I love my whole family very much. I don't feel that I have a disability. For example, I am the José Carlos Atuncar representative of my class, my classmates having elected me; so now I say “I AM THE SHERIFF OF THIS Quispe TOWN!”. And so this is how I live day by day, like the any 11 years old, Peru of my classmates. I also have three good friends‐‐Luis, Leonardo and Dylan‐‐who help me when I need it. I don't feel that my companions discriminate against me. We play jokes on each other and we laugh a lot. In my school everyone acts kindly. Convention on the Rights of Persons with Disabilities: States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters. (Art. 11) 36
Psalm 29, 2‐6. 11‐13: It is worthless to be wrapped up in our pain, sadness, affliction; it only results in embittering us more and projecting that negative energy onto those around us. I praise you, LORD, for you raised me up and did not let my enemies rejoice over me. O LORD, my God, I cried out to you for help and you healed me. LORD, you brought my soul up from Sheol; you let me live, from going down to the pit. Sing praise to the LORD, you faithful; give thanks to his holy memory. For his anger lasts but a moment; his favor a lifetime. At dusk weeping comes for the night; but at dawn there is rejoicing. Hear, O LORD, have mercy on me; LORD, be my helper. You changed my mourning into dancing; you took off my sackcloth and clothed me with gladness. So that my glory may praise you and not be silent. O LORD, my God, forever will I give you thanks. Intention: We pray for all incapacitated persons who live continuously in situations of risk. Prayer of José Carlos Atuncar: I thank God for my family, for waking up every day and for not feeling affected by being in a wheelchair. I just ask God to always take care of me and protect me 37
December 15 Saturday of the Second Week of Advent Marist Anniversary: 1949, departure of the first Brothers for Nigeria. Today’s Readings: Eccl 48: 1‐4.9‐11. Elias will return. Mt 17: 10‐13. Elias has already come and they did not recognize him. Hi, my name is Laura and I have Asperger’s. I guess you could say that life has not been easy for me at times. Some of it is really easy and some of it is not so easy. I like to be known as an Aspie. I am only diagnosed girl with Asperger’s Syndrome in the school. I am currently a year 11 student at Red Bend Catholic College, situated in the Central West of New South Wales. I am hoping to ask at school so I can complete my HSC. The things I really enjoy about being an Aspie is a great eye for detail, taking care of the family horse, singing songs and playing guitar. I love singing and playing the guitar at school Laura Harvey assemblies. One thing I have overcome is to Australia learn to ride a horse. My challenges I face daily is learning to drive and completing the L’s test to get my licence. Another challenge that I want to overcome is to be able to read other people’s body language and facial expressions. Homework is a real constant challenge for me every day, because I would rather listen to my iPod or on my computer. I just find it hard to get organized. Convention on the Rights of Persons with Disabilities: States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and lifelong learning. (Art. 24.1) 38
From psalm 32: We link up with the whole chain of men and women who down the centuries have stood in awe of God. Rejoice, you righteous, in the LORD; praise from the upright is fitting. Give thanks to the LORD on the harp; on the ten‐stringed lyre offer praise. Sing to him a new song; skilfully play with joyful chant. For the LORD’s word is upright; all his works are trustworthy. The LORD foils the plan of nations, frustrates the designs of peoples. But the plan of the LORD stands forever, the designs of his heart through all generations. Blessed is the nation whose God is the LORD, the people chosen as his inheritance. From heaven the LORD looks down and observes the children of Adam, From his dwelling place he surveys all who dwell on earth. The One who fashioned together their hearts is the One who knows all their works. Behold, the eye of the LORD is upon those who fear him, upon those who count on his mercy, To deliver their soul from death, and to keep them alive through famine. Our soul waits for the LORD, he is our help and shield. For in him our hearts rejoice; in his holy name we trust. May your mercy, LORD, be upon us; as we put our hope in you. Intention: We pray that all persons with disabilities may have access to education. Prayer of Laura Harvey: Dear God, Help me to believe in your unseen work and help me face my challenges each day. 39
December 16 Third Sunday of Advent Marist Anniversary: 1845, Bishop Epalle dies on the island of San Cristobal in Oceania. Today’s Readings: Zeph 3: 1‐4‐18ª. The Lord will exult with joy over you. Phil 4: 4‐7. The lord is near. Lk 3: 10‐18. What must we do? I am a young girl namely Mirium Fernando, a Srilankan, 16 years old. I am getting ready to sit for my first public examination this year. I know I am a bright student. But my hearing impairment disturbs my education. My deficiency disturbs my application to my studies, my understanding and learning. I feel very sad when I am deprived of certain opportunities like communication with normal folks. I know I have got the inner strength yet I do fall many a time. My Principal is Rev. Mirium Fernando Sister and her staff encourages me all along in my 16 years old, Sri Lanka education. I am provided with hearing aids. I am being supported especially in taking part in different competitions. I appreciate and pray that all others in the society extend their generous helping hand so that I may attain my aim of life. I do enjoy life with my friends and I am blessed with many a talent such as dancing, sports. I am able to talk to some extend with my lips and of course the sign language definitely helps me to communicate and win my life. I believe that I can do everything with love Jesus. Convention on the Rights of Persons with Disabilities: States Parties recognize the right of persons with disabilities to education. The full development of human potential and sense of dignity and self‐worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity. (Art. 24.1.a) 40
From psalm 33: Many are those who approach to hear something important and vital. We can all talk about God. But to talk from knowledge is not the same as talking from experience. I will bless the LORD at all times; his praise shall be always in my mouth. My soul will glory in the LORD; let the poor hear and be glad. Magnify the LORD with me; and let us exalt his name together. I sought the LORD, and he answered me, delivered me from all my fears. Look to him and be radiant, and your faces may not blush for shame. This poor one cried out and the LORD heard, and from all his distress he saved him. The angel of the LORD encamps around those who fear him, and he saves them. Taste and see that the LORD is good; blessed is the stalwart one who takes refuge in him. Fear the LORD, you his holy ones; nothing is lacking to those who fear him. The rich grow poor and go hungry, but those who seek the LORD lack no good thing. Intention: That governments hear the appeal for persons with disabilities to be integrated into schooling as a normality. Prayer of Mirium Fernando: Loving Almighty God please send me your Spirit to do face my life trials. Take care of me and my family members. Grant me the courage to my studies well. Thank you for everything you have done for me. Finally I place my trust and my future into your precious hands. Amen 41
December 17 Monday of the Third Week of Advent Today’s Readings: Gen 49:1‐2, 8‐10. The sceptre shall not depart from Judah. Mt 1:1‐17. Genealogy of Jesus Christ, Son of David. My name is José Mathías Montiel. I am 11 years old and in the 5th grade at the Marist educational centre in San Pablo de Asuncion, Paraguay. I am a special child, disabled, but I am very grateful to my school for accepting me and giving me the opportunity to grow and to share with the other, normal children, since I am the only child with a disability. I was born in the 28th month of my mother's pregnancy and spent three months in intensive therapy. I had many problems: cessation José Mathías Montiel of breathing, in‐hospital infection, and cerebral 11 years old, Paraguay palsy. I needed blood transfusions and weighted 800grs. The doctors told my parents that the chance that I would survive was almost nil since each day I got worse. But thanks to my mom and dad's faith and their putting me under the protection of the Child Jesus and of Mother Mary, I am now eleven years old. I continue to struggle. The consequences of being born prematurely involve continuing a strict regimen and submitting to necessary surgeries to improve the quality of life that I need so much. The greatest hope I have is that one day I will be able to walk and I thank my parents for all the efforts they make so that this might become a reality. I should confess that they had to sell the house because of the high cost of my treatments and surgeries. Today, my folks continue giving me what is most important: love, health care and a Christian education. At no time have I ever sensed discrimination; my twin sisters share my life too. I would also like to see more people and the government, especially, be more sensitive and dedicate more economic resources to all the people who suffer disabilities. I have many projects as I look to the future. With my intelligence and dedication I know I am capable of reaching my goals and being tomorrow a good person with a profession of serving our suffering Paraguayan people. 42
Convention on the Rights of Persons with Disabilities: States Parties recognize the right (to education) of persons with disabilities to education. (b) The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential; (c) Enabling persons with disabilities to participate effectively in a free society. (Art. 24.1.b,c) Canticle of Isaiah 12, 2‐6: God always offers us his love and extends his hand to invite us to a deep joy. Advent is the proclamation of salvation. God indeed is my salvation; I am confident and unafraid. For the LORD is my strength and my might, and he has been my salvation. With joy you will draw water from the fountains of salvation, And you will say on that day: give thanks to the LORD, acclaim his name; Among the nations make known his deeds, proclaim how exalted is his name. Sing praise to the LORD for he has done glorious things; let this be known throughout all the earth. Shout with exultation, City of Zion, for great in your midst is the Holy One of Israel! Intention: That we might feel responsibility for supporting persons with disabilities that, one day, they will be able to fulfil their wishes. Prayer of José Mathías Montiel: Thank you, Lord Jesus and Mary our Good Mother for this very special gift of life. 43
December 18 Tuesday of the Third Week of Advent International Day of the Migrant Today’s Readings: Jer 2: 5‐8. To raise up for David a legitimate offspring. Mt 1: 18‐24. Jesus will be born of Mary, espoused to Joseph, son of David. My name is Sam Endres, I live in Cairns and go to school at St Augustine’s college. I was born with a profound deafness in both ears, meaning I essentially can’t hear a thing. My parents realised this when I was about two years old, and did everything in their power to remedy it. At the age of three I was blessed with an invention called the Cochlear Implant, which allowed me to hear as other people do. If you Sam Endres spoke to me now you wouldn’t be able to tell Australia me apart from anyone else, however this ability was only made possible through years of speech therapy. My parents were told I would never read or speak past a grade four level, but my intellect is considered a high standard for a grade eleven student. Although I can hear with this device, my disability still comes with some limitations. I cannot hear when I’m not wearing the device. I also have to be very careful when wearing it. I avoid contact sports such as tackle football so that it can’t be damaged. I also find it hard to understand people with strong accents, and have a difficult time comprehending people when they speak from behind me. Finally, I can’t pursue certain careers due to the disability. These include occupations like pilot, policeman, and others. Despite my setbacks, I like to have a positive outlook on life and try not to let my disability slow me down. I aspire to do well in school and get a degree in law at university. Convention on the Rights of Persons with Disabilities: In realizing this right, (to education) States Parties shall ensure that: Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability. (Art. 24.2.a) 44
From psalm 85: How beautiful it is to keep the ears of the heart open to receive the simple message that the ever new and surprising God whispers to us each day! Incline your ear, LORD, and answer me, for I am poor and oppressed. Preserve my life, for I am devoted; save your servant who trusts in you. Lord, you are good and forgiving, most merciful to all who call on you. LORD, hear my prayer; listen to my cry for help. Teach me, LORD, your way that I may walk in your truth, single‐hearted and revering your name. I will praise you with all my heart, glorify your name forever, Lord my God. Your mercy to me is great; you have rescued me from the depths of Sheol. But you, Lord, are a compassionate and gracious God, slow to anger, abounding in mercy and truth. Turn to me, be gracious to me; give your strength to your servant; save the son of your handmaid. Intention: We pray for the children with disabilities in Marist colleges, for our sensitivity towards them. Prayer of Sam Endres: Loving Father, I thank you for the gift of life, for the support of my family and friends, and for the gifts of food and shelter that are available to me. Help all those who are hindered by physical disability be understood by those more fortunate, and to have assistance available to them. Help them to overcome any difficulty and to lead a healthy life like everybody else. 45
December 19 Wednesday of the Third Week of Advent Marist Anniversary: 1886, arrival of the first Brothers in Spain. Today’s Readings: Judges 13: 2‐7. 24‐25ª. The angel announces the birth of Samson. Lk 1: 5‐25. The angel Gabriel announces the birth of John the Baptist. Hi my name is Georgie Lewin and I am 18 years old. I live in South Africa. I love to sing, dance, watch movies, play computer games and listening to the best music ever, Dub Step. I have epilepsy and I have autism too. I don’t see my dad, I have not seen him in nearly two years and this makes me sad. I live with my mom. I have fun at Youth at my church every Sunday night and I go to Challenges with my special needs friends once a month, on a Saturday. At school I have many difficulties that annoy me while I am working, like when my friends tap on the tables or Georgina Lewin make certain noises like counting the same number 18 years old over and over again or humming or whistling. I love South Africa watching birds fly and sing around the world. I even try and copy their whistle. Sometimes I do it at our friends’ farm or at school when I have nothing to do at break. I play Marimba at school and I play the drum. I am also in the choir as my voice is beautiful but my voice can also go out of tune when I sing if I don’t tune my vocal chords. Convention on the Rights of Persons with Disabilities: States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and lifelong learning directed to: The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential. (Art. 24.1.b) From psalm 70: We look at life from the world of the poor. With them we open up to the experience of God who is always surprising. 46
O God, give your judgment to the king; your justice to the king’s son; That he may govern your people with justice, your oppressed with right judgment, May the kings of Tarshish and the islands bring tribute, the kings of Sheba and Seba offer gifts. May all kings bow before him, all nations serve him. He shows pity to the needy and the poor and saves the lives of the poor. From extortion and violence he redeems them, for precious is their blood in his sight. May his name be forever; as long as the sun, may his name endure. May the tribes of the earth give blessings with his name; may all the nations regard him as favoured. Blessed be the LORD God, the God of Israel, who alone does wonderful deeds. Blessed be his glorious name forever; may he fill all the earth with his glory. Amen and amen. Intention: We pray for the integration of all the children with disabilities into the education system of our respective countries. Prayer of Georgina Lewin: That all about my life here comes a prayer please close your eyes. I pray that the sick will get better so they can go back to their families. Lord graciously hear us. I pray for the poor that they will find jobs and homes to cover their heads at night. Lord graciously hear us. I pray for the people who have lost loved ones and keep them safe. Lord graciously hear us. I pray that the children of the world that have no moms or dads will be guided to nice and loving families who will care for them when most needed. Go in peace to love and serve the lord. Send these prayers up on high. Amen. 47
December 20 Thursday of the Third Week of Advent Today’s Readings: Is 7: 10‐14. Behold, the virgin is with child. Lk 1: 26‐38. You will conceive and give birth to a son. Shahzad Asharaf, is the student of Sargodha Catholic High School. He studies in class 7th. Shahzad is fifteen years old. He comes from a very poor and big family. He suffers from some disabilities, like unable to walk straight, crocked hands and even the face. He cannot talk properly. He stretches his chest, drags his one leg and one feels that he will fall any time. His sickness is still not really diagnosed due to extreme poverty. However, according to the family, it is due to the weak shoulders. There are three children in the family who are with disabilities. They are born with some sort of disabilities and by the time they reach Shahzad Asharaf 15 year old, Pakistan their adulthood, they become completely disabled. Shahzad has a brother who is 24 years and an elder sister who is 20, both are completely disable. When we talked with Shahzad, what are some of this feeling regarding his disabilities, he had this to say; “I am not sure why I am like this. I can’t walk properly and as fast as I would like to. I can’t write as quick as I wish to that is why often I miss my homework and I cannot note things from the green board. I feel very sad and unhappy and depressed, when I can’t play like my classmates. I wish if I could play cricket like them. I wish I could take part in the race and become first. Most of my classmates are very helpful and they take care of me. However, some of them are bullies at times and I am afraid of them. I feel angry with my street boys, when they imitate me, walk like me, stammer like me, and run like me. This hurts me the most and I feel, I must never go to school. I am now worried about my studies. My father has told me that I will not be going to school, after summer vacation. Since my father cannot afford my schooling at the same time medication. He can either provide me medicine or send me to school. But I want both, because one day I wish to be like my friend, normal and healthy. Do you think Sir; I will be well one day?” 48
Convention on the Rights of Persons with Disabilities: States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and life long learning directed to: enabling persons with disabilities to participate effectively in a free society. (Art. 24.1.c) From psalm 79: We pray the Lord of Life to visit our home and give us life, his life. O Shepherd of Israel, lend an ear, you who guide Joseph like a flock! Stir up your power, and come to save us. O God, restore us; light up your face and we shall be saved. You have left us to be fought over by our neighbours; our enemies deride us. O God of hosts, restore us; light up your face and we shall be saved. Turn back again, God of hosts; look down from heaven and see; Visit this vine, the stock your right hand has planted, and the son whom you made strong for yourself. Then we will not withdraw from you; revive us, and we will call on your name. LORD God of hosts, restore us; light up your face and we shall be saved. Intention: That we know how to recognize the right of persons with disabilities to enjoy an integral education and that we are capable of denouncing any frustration of that right. Prayer of Shahzad Asharaf: Almighty God, I wish to pray for all those people who are like my brother, sister and myself. Grant them good health. Help me to live my life as normal, as my friends in the school live. I ask this in the man of Jesus, your son. Amen 49
December 21 Friday of the Third Week of Advent Today’s Readings: Song 2:8‐14. The beloved comes, leaping across the mountains. Lk 1:39‐45. And why has this happened to me, that the mother of my Lord comes to me? For me, being a student who participates in the Project of Integration signifies a great support, because I feel happy that they help and teach me, since I find it difficult to read. The people who work with me are kind and cheerful; they help me all the time and are concerned about me. They have helped me in math reading. They have helped me to resolve problems with friends and also to share with my companions. They teach me skills at play and to Jocelyn Vega complete tasks. I hope to continue improving my 12 years old, Chile qualifications, and that my family helps me more. I would like to be able to become a professional woman, to work in the mining business and to be able to help my parents and my brothers and sisters. I believe that it is important what they do with the children and I hope they continue moving ahead doing the same thing with other children that need support. Convention on the Rights of Persons with Disabilities: In realizing this right (education), States Parties shall ensure that: Persons with disabilities receive the support required, within the general education system, to facilitate their effective education. (Art. 24.2.d) From psalm 88: Trust in the Lord's help in face of difficulties. LORD, the God of my salvation, I call out by day; at night I cry aloud in your presence. Let my prayer come before you; incline your ear to my cry. For my soul is filled with troubles; my life draws near to Sheol. 50
I am reckoned with those who go down to the pit; I am like a warrior without strength. My couch is among the dead, like the slain who lie in the grave. You plunge me into the bottom of the pit, into the darkness of the abyss. Your wrath lies heavy upon me; all your waves crash over me. All day I call on you, LORD; I stretch out my hands to you. Do you work wonders for the dead? Do the shades arise and praise you? Is your mercy proclaimed in the grave, your faithfulness among those who have perished? But I cry out to you, LORD; in the morning my prayer comes before you. Why do you reject my soul, LORD, and hide your face��from me? I have been mortally afflicted since youth; I have borne your terrors and I am made numb. Your wrath has swept over me; your terrors have destroyed me. All day they surge round like a flood; from every side they encircle me. Because of you friend and neighbour shun me; my only friend is darkness. Intention: For the boys and girls of the poorest countries who do not enjoy the education that other children have because they were born in more developed countries. Prayer of Jocelyn Vega: Thank you for having helped me with the program of integration.
December 22 Saturday of the Third Week of Advent Today’s Readings: 1 Sam 1: 24‐28. Anna gives thanks for the birth of Samuel. Lk 1: 45‐56. The Almighty has done great things for me. Hi my name is Tessa, I am 17 and I live with my parents and my older brother in Moe Victoria. I go to a nearby Marist catholic school called Lavalla Catholic College in Traralgon. I have cerebral palsy and epilepsy. When I came to this school I discovered one of my classes is down at the very back of the school and my locker and homeroom are at the front. I also found that the ladies toilets are upstairs. It’s hard for me to go to the toilets upstairs. Because of my cerebral palsy one side of my body is weaker than the other. My strong side is the only side I can really use so climbing stairs is really difficult. There is a lot more Tessa Jenkind walking and that also goes for my classes all around 17 years old, Australia the school. I find Maths hard because it is difficult to concentrate with the extra noises in the class. But I can go to ‘The Hub’ where I have teacher’s aides who can help me with any subjects, homework or study. Even though I get ignored sometimes and I barely have any friends at the school, I don’t let that get me down. I like to be involved in any way I can. I am in the Remar group at school, doing my Red Crossing. I also do singing lessons and swimming. At school, I am in the liturgical choir singing with the sopranos. I mostly hang around with the music people because they are all my friends. People sometimes put me down because they don’t think I can do certain stuff. But I don’t take any notice of them anymore. I spent my grade six year having to play with the prep kids because my peers would not accept me. As long as believe I can do it, that’s the most important thing. Because I know what it is like to be bullied I thought of an anti‐bullying play and decided to perform it with some friends of mine from the music group and Remar. We performed for some junior classes and the play was a great hit. At home I put myself down so much that I don’t bother going outside. My normal day at home is Facebook and playing Sims 3 or watching TV. At school, I am given a lot of opportunities by my teachers, aides and friends. I wouldn’t swap any school for this school. 52
Convention on the Rights of Persons with Disabilities: In realizing this right, (to education) States Parties shall ensure that: Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion. (Art. 24.2.e) From psalm 90: Our earthly life is short and fragile before the eternal God who does not suffer change. Lord, you have been our refuge through all generations. Before the mountains were born, the earth and the world brought forth, from eternity to eternity you are God. You turn humanity back into dust, saying, “Return, you children of Adam!” A thousand years in your eyes are merely a day gone by, Before a watch passes in the night, you wash them away; Relent, O LORD! How long? Have pity on your servants! Fill us at daybreak with your mercy, that all our days we may sing for joy. Show your deeds to your servants, your glory to their children. May the favour of the Lord our God be ours. Prosper the work of our hands! Prosper the work of our hands! Intention: We pray that persons with disabilities may develop their abilities and find a meaning in their life that is not one of dependency. Prayer of Tessa Jenkind: Lord, Life is a difficult thing, but I want to do things myself, help me find something that fulfils my life so that I might change some things for the better. Amen. 53
December 23 Fourth Sunday of Advent Today’s Readings: Mic 5:1‐4a. From you shall come forth the ruler of Israel. Heb 10:5‐10. I come to do your will. Lk 1:39‐45. And why has this happened to me, that the mother of my Lord comes to me? Hello! I am Sebastián and I'm 9 years old. I'm in third grade at the Instituto San Martín de Curicó, Chile. My problem is that my spinal column did not form correctly, so I can't walk like the other children. I use a walker to get around. At times I dream of being a normal boy, because I would like to run, play ball and jump ….my classmates invite me to play and we have a great time. I like to dance and last year my partner and I won third prize Cueca Championship at my school. This is the national dance of my country and it's Sebastián Inostroza very beautiful. Winning this prize made me proud 9 years old, Chile of myself and made me aware that there are many things I can do. This is thanks to the support that my school gives me, that permits me to participate in all the activities in spite of my disability. My parents support me with my problem, taking me to the doctor and to the kinesiologist and accompanying me in all my activities. Although I have this difficulty I go forward smiling, with strength, since I know that I can count on the love of my folks, the support of my family, of my friends and of my school. Convention on the Rights of Persons with Disabilities: States Parties shall enable persons with disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community. To this end, States Parties shall take appropriate measures, including:
(a) Facilitating the learning of Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring. (Art. 24,3.a) From psalm 108: our kindness towers to the heavens, and your faithfulness to the skies. My heart is steadfast, God; my heart is steadfast. Let me sing and chant praise. Awake, lyre and harp! I will wake the dawn. I will praise you among the peoples, LORD; I will chant your praise among the nations. For your mercy is greater than the heavens; your faithfulness, to the skies. Appear on high over the heavens, God; your glory above all the earth. Help with your right hand and answer us that your loved ones may escape. Do you no longer march with our armies? Give us aid against the foe; worthless is human help. We will triumph with the help of God, who will trample down our foes. Intention: For the Marist Institute, that it may be ever more sensitive to the needs of children with disabilities. Prayer of Sebastián Inostroza: I ask you, Good Mother, to help me be like the others in my heart, to give and receive love and respect, and never to discriminate. 55
December 24 Monday of the Fourth Week of Advent Marist Anniversary: 1817, Brother Lawrence, the third member of the Institute, joins the community at La Valla. 1836, departure of the first Brothers for Oceania. Today’s Readings: 2 Sam 7:1‐5,14‐16. The Kingdom of David will last forever in the presence of the Lord. Lk 1:67‐79. The daybreak from on high will visit us. In my daily life at home, I depend a lot on my parents to help me perform daily tasks like personal hygiene and moving about. If at home the difficulties are great, away from home they are even greater. When I'm at school I need my classmates and the staff to carry out the activities that involve moving about. These are people who don't measure the distances or the effort needed Vinícius Araújo de Sousa to help me. I believe they consider it a 15 years old, Brazil pleasure to do. The Marists have always given me the values that guide and will guide my life. Thanks to the Marists, I now believe I'm going to be successful. Nowadays I don't see my disability as a problem because I have a great faith in God, and therefore I am going to overcome all the difficulties, always counting on the help of all those that around me. My family and my Marist family always encourage me and will always be present in my day to day life. I have never suffered prejudice or discrimination. I have always been respected inside and outside my home. Since primary school up to secondary school I have always tried to make friends, respecting my neighbour, so that I can receive the affection and the friendship of all. Convention on the Rights of Persons with Disabilities: In order to help ensure the realization of this right, States Parties shall take appropriate measures to employ teachers, including teachers with disabilities, 56
who are qualified in sign language and/or Braille, and to train professionals and staff who work at all levels of education. Such training shall incorporate disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities. (Art. 24.4) From psalm 102: God comes close and fills our heart with hope, to give us strength every day. LORD, hear my prayer; let my cry come to you. Do not hide your face from me in the day of my distress. For my days vanish like smoke; my bones burn away as in a furnace. My heart is withered, dried up like grass, too wasted to eat my food. I lie awake and moan, like a lone sparrow on the roof. All day long my enemies taunt me; in their rage, they make my name a curse. My days are like a lengthening shadow; I wither like the grass. But you, LORD, are enthroned forever; your renown is for all generations. Intention: For those institutions that are in charge of children with disabilities or that fight to better incorporate them into society. Prayer of Vinícius Araújo de Sousa: Lord, thank you for all the good things that have happened to me, especially for the family I have. Thank you also for the difficulties I face, since they are going to strengthen me and make me a still better person. Protect, O Lord, all those around me‐‐my family, the Marist family and all those who face the same difficulties as I do. Make the world understand the value of life and what is truly important: to love and to be loved in everything, what makes us special and unique, and our differences. Amen. 57
APPENDIX OTHER TESTIMONIES Testimony of Ezequiel Ambrosino, 18 years old, Argentina. I'm happy with everything I do. In my Marist College, the San Fernando, I felt very at ease during all the years I’ve spent there, from kindergarten to secondary school. I paraded proudly as a former Marist student, all the city saw me. I've got a degree in management studies and now I'm studying Rural Management at university. I have excellent teachers and mates. I'm doing very well and I never give up. I also study Business Administration. I like acting like I did when I went to school. I study singing and I feel the "cuarteto" (cheerful musical rhythm of a region of Argentina) running through my veins. My city's newspaper talked about me, the headline of the article was: "Boy with Down syndrome finishes secondary school thanks to treatment." I've been taken pictures with my school friends, who are the best thing I have. I love them and want to thank them for all that they've done. My brother's friends are also very good friends. I've never criticized anyone, that's why people respect me and accept me as I am. I go out with my friends to have fun or just for a coffee. I go to birthday parties and barbecues, and I enjoy myself. We laugh and chat. I'm in love with a girl and I write her poems and dedicate songs to her. In good times I share things with the others, while in bad times I try to talk to someone to get it out of my chest, and there is always somebody there for me. I want to thank my god‐mother for being so kind to me. This school is a gift of God for young people like me and my companions. All the Marists are a piece of my heart, they accepted me and helped me much in my life. I thank the Directors, the Brothers, the Preceptors, the porters and the Pastoral because they love me and accept me with so much affection. I trust and love my school... LONG LIVE ALL OF YOU!
Testimony of Andrea, mother of Eduardo de Oliveira, 9 years old, Brazil. I got excited when I was invited to talk about my son Felipe, who is my greatest treasure. He is 9 years old. He was diagnosed with mild autism when he was 7. At first, I didn’t know he was autistic; I noticed that he was somehow different, but I could never imagine that. After the diagnosis, I began realizing day after day that the greatest impact that autism had on my son was on his ability to relate to other people and to understand things that were apparently simple. This worried me because I began wondering how would Felipe be as an adult. I suffered so much at first. The biggest difficulty I had and still have is with the prejudice that society has in relation to the behaviour of an autistic child. When I tried to enrol him in a school, the answer I got was: "we cannot enrol your child because this school is very noisy and he cannot live with the noise." This and his exclusion from some activities were the most serious acts of discrimination he has suffered. He was accepted at another school, but he would not participate in the activities; he got isolated and was not allowed to take part in school trips. The school officials would tell me that "he cannot participate because he doesn't obey." As far as aids are concerned, I get no support from the State. Whatever Felipe needs from me or my husband, we save money and try to meet his needs with what we've got. Currently, I receive great support from the community centre and the Brother Rivat Marist school. It was thanks to the attention that everyone has paid to Felipe that I was able to identify his autism. The work they do with my child is different and I realize that every day he develops new faculties. As to the difficulties, I try not to think about the negative aspects, I look at my son and think, "today he was able to overcome an obstacle." This is how I find the strength to help him; I’ve learned to think this way. I talk very often with the educational co‐ordinator, she always encourages me about Felipe. As soon as he joined the school, in our first interview, after he was diagnosed with autism, I was desperate and she told me "your child can make it, together we will help him and for that I need to know that I can rely on you too." Now I thank God for everything. Prayer: Oh, Lord, thank you for the child that you gave me. May he improve every day. Amen. 59
Testimony of José Pablo Marfan, 20 years old, Chile. My name is Jose Pablo Marfan Förster, I'm 20 years old and I'm a former student of the San Fernando Marist Institute. I graduated in 2011. My disability has not been a major obstacle to achieving my goals. When the Marist school accepted me, at first it felt a little strange and I was frightened, but as time went on I built some good relationships with my schoolmates, who accepted me as I am and opened their hearts to me, so I became one of them. Both the school and I had to get used to something new and we slowly adapted ourselves to this great challenge both at the infrastructure and coexistence levels; they helped me very much, because when they opened themselves to me, I had the chance to show them my qualities and talents, as well as my weaknesses, which I managed to overcome gradually to achieve my goals. Everyone in the school, from the assistants to the principal, has been important in my life. With a smile or a word, they made me feel stronger to go ahead and break the barriers that I thought would be much harder to overcome. I thank God for meeting so many people at school, who undoubtedly have been a valuable part of my life, making me stronger to be what I am today. Testimony of María del Milagro Boscacci, 13 years old, Argentina. I go to the Sacred Heart School of the Marist Brothers in the city of San Francisco. My classmates and teachers say I am a joyful, loving, and responsible person, that I'm always smiling and that I am a good friend. When I hear music I move to the beat. I would like to be in the school band. I also have photos with famous singers! I like singing, expressing myself and creating choreographies with my friends. 60
If I feel that someone is telling me something because I'm blind, or if I understand that they don’t involve me, I tell them that we are all equal even if we have a problem and just don’t give it any importance. The teachers are very patient with me, they ask me if I've finished the assignment and, if not, they wait for me. My classmates and other friends ask me if I need anything, if I'm fine. In the street, people who don't know me greet me and I say hello! I like where I live because I can hear the birds, feel the wind, hear the music or the radio that people listen to in their homes, I walk peacefully, I hear the kids playing. When people in the street see me with my stick, they respect me, and I try to cross away from the cars. If I can't do something, I ask for help. I'm doing very well in Mathematics. I like history, maybe because I have a good memory. In Citizenship and Participation I give examples of rights based on how I live as a blind person. My Physical Education teacher taught me to run, to be more confident and my friends take turns helping me with the exercises. I participated in athletics competitions. I enjoy myself when I'm with my little sister, we watch "telly" and she speaks to me with her little voice. I have cousins, uncles, and I enjoy myself with them too. We talk and play. I go to two places where I meet other friends who are blind and have other problems. There they help me with my homework or explain me things if I have doubts after school, and we do activities to integrate ourselves. I really want to continue studying ... now I like geography! Marcia Aparecida Langraff, 17 years old, Brazil. Author of the report: person responsible for the girl. Attends the NUSELON Home Community Centre. Evangelical Community Centre of Londrina. Marcia came to the Home in 2007 by order of the Guardianship Board, because she was a victim of domestic violence. She was assisted by APAE (Association of Parents and Friends of Children with Special Needs), where she was administered medications, due to mild mental retardation. Marcia needs a special treatment, which was something hard to give her in the context of family 61
violence. She needs the support of a person who takes and fetches her, looks after her personal care as well as going out at night, which is dangerous; something that she doesn't understand as teenagers her age do. We’ve been helped by the local community to enrol her in a wonderful, special school where she does physical therapy, sports, and receives counselling. The Marist Education Centre provides a very important help. As Marcia cannot walk alone, like other children, we have a van donated by the Marist Brothers that takes her to the special school, which gives us the assurance that she is in good company. Marcia was discriminated against, even in the Home. Sometimes, the children said she was crazy. In these situations she learned to call us. On some occasions, she was put in embarrassing situations by other teenagers who would also use her for their needs, taking advantage of her disability. We are aware of this and we devote our attention to her all the time. Today, no one discriminates against Marcia. Our main concern is to check who is in the room with her, and who can dominate her, to make her hide things for them, doing favours, lie... Our intention is to place her with peers who respect her and don't dominate her. We have understood that the difficulty that has the greatest impact on Marcia is learning. Not long ago she learned to write her name. The hardest thing is reading, to understand what she reads. She cannot protect herself, because she's too weak; she always needs someone to watch over her. Therefore, we know that if she were in a place or in a family without such protection, she would be very vulnerable. Marcia is an important person in the Home. Sometimes, people wonder what it will be like when Marcia leaves the Home, as she is such a joyful person. She involves the people who care for her; she involves the children. She is very loving, cheerful, with a spontaneity that I just cannot explain. Marcia's joy is a fundamental key. She's the joy of the Home, always hugging everybody; joy is what makes her unique, the feeling that surrounds her life. Her love for people, the things she does, she puts a great love in what she does...She loves the school, the community centre, the people who are there. Her naivety is very great, it involves all the people around her.
Pedro Henrique da Costa, 3 years old, Brazil. Rita Smith, Pedro's mother tells us her experience. What concerns me the most is how difficult it is for him to communicate with me and with others. I feel discrimination in the eyes of those people who refuse to get along with him, even though they never say anything aggressive. I have the support of my husband, my mother, the educators, the social worker, the infirmary assistant at the Marist Community Centre and the Counselling Centre, the speech therapist. I overcome the difficulties with faith...
Víctor Gabriel Szabo Leite, 3 years and 2 months, Brazil. Author of the testimony: Sheila de Souza Pomilho. "A central aspect of both inclusive and reflective practice is listening. Active listening is a particularly effective way for both adults and children to gain understanding of another person's ideas [...]" (Paige‐Smith and Craft, 2010). This involves knowing that children are social beings. For in them we find skills and knowledge regardless of their physical, cognitive, emotional or social aspects. At first, Victor Gabriel Szabo Leite was diagnosed with neonatal seizures, caused by neonatal anoxia and which led to hypoxic‐ischemic encephalopathy and mental or motor deficits. His family believes that these were the problems that prevented him from interacting with other children, as he cannot move and tends to defend himself." What hurt us the most were the judgments and prejudices of others vis‐à‐vis his behaviour and reactions in daily life. In fact, my suffering is anticipated because I'm struggling today to give him a better future." His mother believes that in Sao Paulo, far from the city where his family lives, he will find a great variety of equipment to support him and the necessary health care for the treatment he needs. 63
But for that, Victor's mother, Elizabeth, needs to find other financial resources. Victor receives financial assistance from the government, which also pays for his transportation. However, the daily care Victor needs from her mother prevents her from having a regular job, which causes difficulties in terms of family organization and prevents the family from having a steady income. Her words are a sign of her unique sensitiveness. "He’s a persevering child, he can really do anything. Even without knowing what life is, he has always fought." Larissa Isabele dos Santos Ferreira, 8 years old, Brazil. Author of the testimony: Luciana Rosa dos Santos (Larissa's mother). Larissa was born with meningocele, a disability better known as spina bifida. It is a congenital malformation of the spine, which impedes the main protective function of the spinal cord, the connection between the brain and the peripheral nerves of the body. When the spinal cord has no protection, as in the case of spina bifida, many of the nerves can be traumatized or cease to function; therefore, the organs innervated by the spinal cord may be affected (bladder, intestines and muscles). According to her mother, the doctors did not believe that the girl would develop and make the significant progress that we can see today. Larissa is a winner and that shows: she's happy, proud, dedicated, intelligent ... and many other characteristics that I could tell just by looking in her eyes during our conversation. We asked Larissa: How do you feel about the difficulty of not being able to walk? Her answer was: "My schoolmates help me carry my backpack and the chair, while my teacher helps me with the stairs. All this makes me feel good at school, because I wanted to study on the second floor. I play a little in the court yard, but I can't remember the name of the games. My classmates and teacher treat me with love. My mother combs my hair. Mom and dad take me to school." Larissa's mother said they have spent money to make improvements to their house: ramps, renovation of the bathroom, grab bars... She explained that 64
Larissa is very laborious, but also very demanding, that when she wants something they must give it to her, and that they strive to fulfil their daughter’s wishes as far as possible. But they also place limits when they have no resources, correct her as they do with her brother, as her disability is not a good reason for not setting limits. The girl is sad and angry for not being able to play, run like her friends, and sometimes she feels discriminated against because her schoolmates don't want to play with her. Her mother also explained that the treatment she has been on could help her walk independently; in fact she already does it, with the help of a walker. What Larissa wants the most is to be involved in the Reflorecer Marist Centre and play with Rick, her trainer; her mother adds that Larissa also wants to learn to read and write. She also said that the girl is independent and that the assessment of her reading and writing skills showed that Larissa is in the natural process of children of her age. The doctor also said that perhaps she has even made some progress in mathematical logic. I ended the interview by asking Larissa to write me something that summarized our conversation. What she wrote was: 65