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    Victim of Disability: A Case Study

    2014-04-12 00:00:00ManishaShastri\tTranslatedZhuLuqi

    Abstract

    \"He sat there, tied to a pole under a green rexine sheet for shade, repeating the words 'jeeva jeeva.' His face covered in mud, his hands smeared in his own excrement, scarcely clothed, smiling from end to end, oblivious to his circumstances.\"

    摘要

    “他坐在那里,被綁在一根柱子上,頭頂上的綠色仿皮布遮擋了陽光,嘴里重復著‘jeeva jeeva’這個詞。他的臉上布滿泥土,雙手沾著自己的排泄物,衣不蔽體,面帶微笑,并沒注意到自己所處的環(huán)境?!?/p>

    The purpose of this paper is to extrapolate how persons with disabilities become a victim of neglect, abuse and their circumstances (which are beyond their control) due to a lack of awareness about disability, stigma, stereotyping and lack of social support.

    這篇文章的目的是推論由于對殘疾的認識的缺乏、侮辱、古板印象和社會供養(yǎng)的不足,殘疾人怎樣成為忽視、虐待和生活環(huán)境(不在他們控制范圍內(nèi))的受害者。

    Introduction

    介紹

    Across the world, persons with disabilities are the largest minority group devoid of services and facilities. As a result they are the least nourished, healthy, educated or employed. They are subject to a long history of neglect, isolation, poverty, deprivation, charity and pity. The situation of persons with disabilities in India is not significantly different. The responsibility of care of persons with disabilities is generally left to their families and a few institutions managed by voluntary organisations and the government. Persons with disability in India are mostly ignored by the society as they are seen as “dependents”, a “l(fā)iability” and “unproductive.” The Census of India, for the first time, enumerated persons with disabilities in 2001, according to which there are more than 21 million persons with disability within the country, contrary to the United Nations figure of 10 percent.

    Historically, in traditional Indian belief, disabilities have been seen as a punishment for sins committed in the previous life by an individual or the family members. In some cases, families regard their disabled child as being “cursed” and a burden that must be dealt with, which often leads to the neglect and rejection of the child; the child may even be kept hidden from the community due to the fear of facing rejection from the community. According to a study done by the World Health Organization (2004) there are 31 million individuals with Intellectual Disabilities in India. Most individuals with Intellectual Disabilities in India have not formally been identified and even among those who have been identified -- a majority are excluded and shunned by society. There is a lack of awareness about Intellectual Disabilities in India and most individuals suffering from Intellectual disabilities are perceived to be and labelled as ‘mad’. Individuals with Intellectual Disabilities are often perceived as fundamentally “flawed” and with diminished, placing them at the bottom of the social structures.

    殘疾人已經(jīng)成為全世界最大的缺少服務和設施的弱勢群體。他們因此也成為了最為營養(yǎng)不良、健康水平最不達標、受教育程度最低和最少成功就業(yè)的人群。長久以來,他們都是被忽視、排斥、貧困、匱乏、慈善和憐憫的對象。印度殘疾人的處境并沒有什么不同。關(guān)愛殘疾人的責任大部分落在了其家人的身上,以及政府和幾個為數(shù)不多的由志愿者組織運行的機構(gòu)。殘疾人在印度大多情況下被社會忽略,因為他們被視為是“從屬者”、“負擔”和“非生產(chǎn)性的”。 2001年,印度的人口普查首次將殘疾人計入在內(nèi),其中顯示國內(nèi)的殘疾人數(shù)量約為2100萬,與聯(lián)合國記錄的國家總?cè)丝诘?0%不符。

    在傳統(tǒng)的印度信仰中,殘疾被視為是對前世個人或家庭成員所犯罪行的懲罰。在這種情況下,家人會認為他們殘疾的孩子是一種“詛咒”和一個他們必須承擔的負擔,這樣也就使孩子遭受忽視和排斥;孩子甚至有可能被藏起來避免和社區(qū)的接觸,因為他們害怕面對社區(qū)的排斥。世界衛(wèi)生組織2004年的報告顯示印度有3100萬人患有智力殘疾。在印度,大多數(shù)患有智力殘疾的人沒有獲得正式鑒定,而在那些已經(jīng)被鑒定的人群中——絕大多數(shù)人被社會排斥。印度缺乏對于智力殘疾的認識,而大多患有智力殘疾的人則被貼上“瘋子”的標簽。智力殘疾的人們被認為是天生“殘缺”或“低等”,使得他們處于社會結(jié)構(gòu)的底層。

    Early experiences become essential in the growth and development of children. Things such as eating habits, attitudes towards self, exercise and self-care routines build from the child’s earliest experiences. One of the most important things children learn in the early years is about themselves -- they develop a picture of themselves that affects the ways they approach any situation, task, or relationship with another person. In other words, they develop a self-concept. In order for a child to develop a healthy self-concept, it is essential that the child has positive and caring relationships, people who care for them and support them; adults who appreciate their uniqueness and respond to their feelings, needs and interests; and adults who help them learn how to control their behaviour and what behaviour is socially acceptable.

    幼年經(jīng)歷是兒童成長和發(fā)展過程中的關(guān)鍵。飲食習慣、自我態(tài)度、身體鍛煉和自我照顧等習慣都是在兒童成長的最早期養(yǎng)成的。兒童在幼年時習得的最重要的知識之一就是關(guān)于他們自身——他們會形成自我肖像,這會影響他們對待各種情況、任務和與他人人際關(guān)系的方式。換言之,他們會形成一種自我概念。為了兒童可以形成健康的自我概念,使兒童擁有積極和關(guān)愛的關(guān)系很重要,包括關(guān)心并支持他們的人;珍視其獨特性并回應其感受、需求和興趣的成年人;以及幫助他們學習如何控制自身行為和了解何種行為是為社會所接受的成年人。

    Child rights

    兒童權(quán)利

    The United Nations General Assembly, based on the Universal Declaration of Human Rights, recognises children’s rights, by stating that “all human beings are born free in dignity and rights” and that children are entitled to special care and protection; it also states that “mankind owes to the child the best that it has to give.” In 1959, the UN General Assembly adopted a more detailed Declaration of the Rights of the Child; this framework was further strengthened with the adoption of the two International Covenants -- on Civil and Political Rights and on Economic, Social and Political Rights. All these efforts put together led to the adoption of the Convention on Child Rights in 1989, the objective being to ensure that governments and individuals across the world work to ensure that “all the world’s children enjoy the rights they deserve -- to survival, health and education; to a caring family environment, to play and culture; to protection from exploitation and abuse of all kinds and to have their voices heard and opinions taken into account on issues affecting their lives” (Annan, 2000).

    基于《世界人權(quán)宣言》,聯(lián)合大會承認兒童的權(quán)利,聲明“所有人生來享有尊嚴和權(quán)利,兒童理應得到特殊關(guān)愛和保護”;還聲明“人類應給予兒童他們所能給予的最好的”。1959年,聯(lián)合國大會通過了更為具體的《兒童權(quán)利宣言》;該框架之后隨著《公民與政治權(quán)利國際公約》和《經(jīng)濟、社會和政治權(quán)利國際公約》的通過而被加強。所有努力使得《兒童權(quán)利公約》在1989年得以通過,其目的是確保全世界的政府和個人努力保證“全世界的兒童享受他們應得的權(quán)利——生存、健康和教育;關(guān)注家庭環(huán)境、游戲和文化;保護兒童免于各種形式的剝削和虐待,保證兒童的聲音被聽到、兒童的想法在關(guān)乎他們生活的問題上被采納”。(Annan, 2000)

    The framework of the Indian Constitution too has ample provisions for the protection, development and welfare of children. There are a wide range of laws that guarantee children their rights and entitlements as provided in the Constitution and in the UN Convention. The government as a part of the various Five Year Plans has launched numerous programmes aimed at providing services to children in the areas of health, nutrition and education. The department for Women and Children was set up under the Ministry of Human Resource Development in 1985. This department formulated a National Plan of Action for Children in 1992, the same year in which India ratified the UN Convention on Rights of Children. A number of schemes for the welfare and development of children have been strengthened and refined with a view to ensuring children their economic, political and social rights. At present various schemes and policies are in place which help ensure these rights such at the Right to Education Act, the Integrated Child Development Scheme, National Rural Health Mission, Elimination of Child Labour etc.

    《印度憲法》的框架也有眾多關(guān)乎兒童保護、發(fā)展和福利的條款。有許多相關(guān)立法用來保證《憲法》和《聯(lián)合國公約》中確立的兒童的權(quán)利。政府啟動了一系列項目,致力于為區(qū)域內(nèi)的兒童提供健康、營養(yǎng)和教育的服務,作為其“五年計劃”的一部分。隸屬于人力資源發(fā)展部的婦女和兒童署成立于1985年。該部門在1992年擬定了《國家兒童行動綱領(lǐng)》,同年,印度簽署了聯(lián)合國《兒童權(quán)利公約》。眾多關(guān)于兒童福利和發(fā)展的計劃得以加強和提升,旨在保證兒童的經(jīng)濟、政治和社會權(quán)利。目前,許多計劃和政策正在實施,如《教育權(quán)利法案》、“兒童整體發(fā)展計劃”、“國家農(nóng)村健康任務”和“消除童工”等。

    Disability

    殘疾

    The United Nations Convention on the Rights of Persons with Disabilities, in its Preamble acknowledges and recognizes disability as an “evolving concept” and that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (United Nations, 2006).

    Over the years, perceptions towards disability have varied significantly from one community to another. Attitudes towards people with disabilities across cultures suggest that societal perceptions and treatment of persons with disabilities are neither homogeneous nor static. Among the Greeks, the sick were considered inferior, and Plato in his Republic, recommends that the deformed offspring of both the superior and inferior be put away in some “mysterious unknown places.” During the 16th century, it was believed that persons with Intellectual Disabilities were possessed by evil spirits. Thus, persons with Intellectual Disabilities were often subjected to mental and/or physical pain as a means of exorcising the spirits. In the 19th century, in Britain, state aid to the poor and otherwise handicapped was opposed. It was reasoned that the preservation of the \"unfit\" would impede the process of natural selection and tamper with the selection of the “best” or “fittest” elements necessary for progeny. It was also during this period that the practice of Eugenics came about -- a social philosophy that advocates the improvement of human genetic traits through the promotion of increased reproduction of people with desired traits and reduced reproduction of people with less-desired or undesired traits.

    Persons with disabilities were completely rejected by some cultures, in others they were outcasts, while in some they were treated as economic liabilities and grudgingly kept alive by their families. In other settings, persons with disabilities were tolerated and treated in incidental ways, while in other cultures they were given respected status and allowed to participate to the fullest extent of their capability.

    聯(lián)合國《殘疾人權(quán)利公約》的前言中承認殘疾是一個“正在進化的概念”,以及“殘疾來自有損傷的人們之間的互動,還來自于在態(tài)度、環(huán)境之中的、阻礙其充分、有效、與他人平等地融入社會的障礙?!保║nited Nations, 2006)

    多年來,不同社區(qū)對殘疾的認識大有不同。不同文化對殘疾人的不同態(tài)度體現(xiàn)了社會對殘疾人的認知和對待并不能一概而論,也并非一成不變。希臘人認為病人是下等的,柏拉圖在《理想國》中寫道,上等人和劣等人的畸形后代都會被放在一些“神秘未知的地方”。在16世紀,患有智力殘疾的人被認為是惡靈附身。因此,智力殘疾的人往往要經(jīng)歷精神和/或身體的折磨以驅(qū)除惡靈。在19世紀的英國,國家對窮人和殘疾人的救助遭到反對。其理由是對這種“不適者”的保留會妨礙自然選擇的過程,篡改選擇“最優(yōu)”或“最適者”元素所必需的人選。同樣也是在這個時期,社會上出現(xiàn)了“優(yōu)生學”的實踐——一種社會哲學,宣揚通過增加擁有理想基因鏈的人的繁殖和減少擁有不理想基因鏈的人的繁殖,改善人類基因鏈。

    殘疾人在一些文化中完全遭到排斥,有一些還被遺棄,還有一些被當成是家人的經(jīng)濟負擔,勉強偷生。在一些社會背景下,殘疾人能夠得到包容,但不能得到重點關(guān)注。而在另外一些文化中,殘疾人得到社會尊重,并可以充分發(fā)揮自身能力融入社會。

    It was only after the Second World War, when there was an increase in the number of persons with disabilities due to war-acquired injuries that the plight of persons with disabilities came to notice. The approach towards them, however, was that of charity. The Charity Model treats people with disabilities as helpless victims needing care and protection. It relies on charity and benevolence rather than justice and equality. The charity model justified the exclusion of persons with disabilities from mainstream education and employment.

    The initial efforts of the government and individuals were based on this model. Since the post-War era, there have been various paradigmatic shifts within the discourse on disability. After the Charity Model came the Medical Model which assumed that the challenge experienced by persons with disabilities are directly related to their physical, sensory or intellectual impairments. It defines disability within the clinical framework and supports the belief that persons with disabilities are biologically and psychologically inferior in comparison to non-disabled persons. In contrast to the Medical Model came the Social Model, according to which individuals are disabled because of architectural, attitudinal and social barriers created by society. This model views disability as a consequence of oppression, prejudice and discrimination by the society against persons with disability. As per this model it is the society which constructs economic, social, health, architectural, legal, and cultural and other barriers limiting persons with disability from actively becoming a part of society. Over the past two decades there has been a dramatic shift in perspective, from the Charity Model to the Rights-based Model, under which disability is positioned as an important dimension of human culture. According to this model, all human beings irrespective of their disabilities have certain rights, which are unchallengeable. This model builds upon the spirit of the Universal Declaration of Human Rights, 1948, according to which, “all human beings are born free and equal in rights and dignity”; it lays emphasis on viewing persons with disabilities as subjects and not as objects.

    第二次世界大戰(zhàn)之后,戰(zhàn)爭負傷使得殘疾人人數(shù)大量增加,這使殘疾人第一次進入公眾的視線。而對待他們的方式多以慈善為主。慈善模式將殘疾人視為是無助的受害者,急需關(guān)心和照顧。這種模式依賴于捐助和愛心,而非正義和平等。慈善模式也使得殘疾人被排斥在主流教育和就業(yè)之外。

    政府和個人對于殘疾人所做出的努力在初期都是基于這個模式。從戰(zhàn)后年代開始,社會上有關(guān)殘疾人的論述經(jīng)歷了幾個范例性的轉(zhuǎn)變。慈善模式之后緊接著是醫(yī)療模式,其認為殘疾人所面臨的挑戰(zhàn)與他們身體上、感官上、智力上的損傷直接相關(guān)。這種模式在臨床框架內(nèi)對殘疾進行定義,認為殘疾人在生物學上和心理學上都劣于非殘疾的人。與醫(yī)療模式形成對比的是社會模式,其認為人之所以殘疾是出于社會所制造的建筑上的、態(tài)度上的和社會性的障礙。這種模式將殘疾視為是社會對殘疾人施以的壓迫、偏見和歧視。依照這一模式,社會構(gòu)成了經(jīng)濟、社會、健康、建筑、法律、文化和其他方面的障礙,限制殘疾人積極地成為社會的一部分。在過去的二十年間,殘疾被定位成是人類文化的一個重要構(gòu)成部分。基于該模式,所有人類無論殘疾與否都享有權(quán)利,這是不可挑戰(zhàn)的。這一模式構(gòu)成了1948年通過的《世界人權(quán)宣言》的核心精神,其聲明“所有人類都生來自由,享受平等的權(quán)利和尊嚴”;它強調(diào)將殘疾人視作是主體而非客體。

    According to a recent World Report, it has been found that persons with disabilities are more prone to violence. Individuals with physical or mental disabilities are more prone and vulnerable to experiencing and being victims of physical, sexual, domestic, or non-domestic violence. Many people with disabling conditions are especially vulnerable to victimization because of their real or perceived inability to fight or flee, or to notify others and testify about the victimization. Often, as the person may be physically frail, the victimization may exacerbate existing health or mental health problems and there is a great risk of re-victimization. Within the Indian context, there are primarily two kinds of abuse that persons with disability may face; due to societal barriers, unacceptance and stigma:

    Neglect: The wilful failure of a “caregiver” to fulfil his or her care-giving responsibilities that leads to physical harm through withholding of services necessary to maintain health and well-being; and,

    Abandonment: Desertion, wilful forsaking, or the withdrawal or neglect of duties and obligations owed by the caregiver.

    According to the National Sample Survey Organization data of 2001, 76.14 percent of India’s disabled population resides in rural areas. According to Child Relief and You (CRY) three percent of India’s children are born with an Intellectual Disability; this data also shows that 20 out of every 1000 children in rural areas are disabled as compared to 16 out of 1000 in urban areas.

    近期的一份世界報告顯示,殘疾人更易受到暴力的影響?;加猩眢w或精神殘疾的人更容易成為武力威脅、性暴力、家庭暴力和非家庭暴力的受害者。許多有著殘疾情況的人更易受到傷害,因為他們天生或后天不具備戰(zhàn)斗或逃跑的能力,通知他人的能力,以及指正犯罪的能力。因為受害者往往身體較為脆弱,外界帶來的傷害可能加重現(xiàn)有的健康或精神問題,而且還有極大的二次傷害的風險。在印度,由于社會障礙造成的不接受和羞辱,殘疾人所面對的虐待基本有兩種:

    忽視:照料者有意的不履行他或她的給予照料的責任,通過拒絕給予維持健康和幸福所必需的服務導致身體傷害;

    放棄:拋棄、有意的遺棄,或撤回或忽視照料者應履行的責任和義務。

    根據(jù)全國抽樣調(diào)查組織2001年的數(shù)據(jù),印度76.14%的殘疾人口居住在農(nóng)村地區(qū)。來自“兒童救濟和你”組織的數(shù)據(jù)顯示3%的印度兒童為先天性智力殘疾;該數(shù)據(jù)還顯示在農(nóng)村地區(qū),每1,000個兒童中就有20個患有殘疾,而這一比例在城市地區(qū)為千分之十六。

    The Case study

    案例研究

    In this paper I shall be using the example of a case from Taka Village in Latur District of Maharashtra.

    在本文中,我會使用來自馬哈拉施特拉邦拉圖爾區(qū)的塔卡村作為案例。

    While collecting data of persons with disability in the village Taka, the lady helping us identify persons with disability in the village told us that down the road lived a “mad” boy who threw stones at people. My fellow students and I decided to visit the house of this “mad” boy. As we approached the house we saw a green rexine sheet set up like a tent. Thinking that it was a shed for cattle, we walked ahead to the door of the house. As we waited for someone to open the door, we noticed under the tent-like structure, a boy wearing only an ill-fitting, torn T-shirt, his face covered in mud and looking extremely malnourished. As we moved closer to him, he smiled; we noticed his hands were smeared with his own excrement. During the time that we stood there interacting with the child’s grandmother, the child sat there rubbing his eyes and putting in his mouth those same smeared hands.

    The house was small with not sufficient space for four members, a kitchen and an area used as a bathroom -- its boundary made by tree branches. The family did not possess much, living in a humble manner, within whatever means available to them. The next day our entire group visited the house of the child, along with some local leaders and officials from the local school. The child then was enrolled in the school and his mother was asked to bring him to school every day for an hour. The family was counselled and told that the child must not be kept tied, that the child must be bathed regularly and fed properly; however, when we visited the house the next two days, the child was found kept tied again. It was decided to call ChildLine and request their intervention in the case. Through ChildLine, the child was taken to the civil hospital and was diagnosed with severe Intellectual Disability along with convulsion disorder; after the check-up, the child was produced before the Child Welfare Committee and a legal order was passed to institutionalize the child.

    當我們收集塔卡村的殘疾人數(shù)據(jù)時,幫助我們辨別村中殘疾人的女士告訴我們,在村子道路的盡頭,住著一個“瘋”男孩,他會朝人們?nèi)邮^。我的學生和我決定去看看這個“瘋”男孩的家。當我們快要走到房子的時候,我們看見一塊綠色的仿皮布像帳篷一樣被支起來,更像是個牛棚。我們走到房子的門前。當我們等待有人來開門的時候,我們注意到,在那個帳篷結(jié)構(gòu)的下面,有一個身穿不合身的、破爛T恤的男孩,他的臉上布滿泥土,看上去極度營養(yǎng)不良。我們往前走了走,與他靠得更近,他笑了;我們注意到他的手上沾著自己的排泄物。在我們與孩子的祖母溝通期間,他一直坐在那兒,用臟臟的手揉眼睛,還把手放進嘴里。

    那所房子很小,對四個人來說空間并不夠。廚房和一個被當作是洗手間的區(qū)域之間是用樹枝隔開的。這個家庭擁有的不多,以一種他們能夠謀得的方式謙卑的生活著。第二天,我們整個團隊,以及一些當?shù)氐念I(lǐng)導和當?shù)貙W校的官員,一起拜訪了男孩的家。他們接收了男孩入學,同時還要求孩子的母親每天帶他去學校學習一小時。他們還給了這個家庭一些建議,告訴他們不能這樣將孩子綁住,要定期給孩子洗澡,還要給他提供合理的膳食。然而,當我們在接下來的兩天又去探望孩子的時候,我們發(fā)現(xiàn)他再次被綁在了那里。后來我們決定撥打“兒童熱線”,請求他們的介入?!皟和療峋€”帶孩子去了醫(yī)院,并檢查出他患有嚴重的“智力殘疾”伴有驚厥;體檢之后,該男孩的情況被上報至“兒童福利委員會”,訴諸法律程序?qū)和糜诠矙C構(gòu)下進行照料。

    While all this was going on, it was found that the mother had been separated from her husband before the village Nyaya Panchayat and that the husband had married twice after. Based on our observations, it was felt that the maternal grandmother, mother and the elder sister of the child were indifferent towards his condition; unlike the maternal grandfather who seemed to be immensely attached to the child. Each time the family was asked why the child was kept tied, the response would be the same: “if we leave him untied he runs away and throws stones at people”. But during the time we spent with the child, he never ran or threw stones. Occasionally yes, when he was tied he would throw stones, but not with the intention of hurting anyone, only as a playful gesture.

    We again visited the child after a few days and found that the child was still being kept tied by the family. This time however, a different picture emerged. Our group interacted with the neighbours and it was found that the mother of the child herself faced violence at the hands of her parents; was forced to go work in the field every day and bring back money; that the grandmother would not touch the child or feed him even if he kept crying and yelling for food and that the mother had little or no choice but to keep her child tied.

    當這一切還在進行中,我們得知那位母親已經(jīng)在正理派長老會的干預下與丈夫分開,并且丈夫已經(jīng)在那之后又結(jié)了兩次婚?;谖覀兊挠^察,我們感覺到母系的祖母、母親和姐姐對孩子的狀況比較冷漠;相反父系的祖父似乎更牽掛孩子。每次當家人們被問到為什么把孩子綁起來,回答都是一樣的:“如果我們不把他綁起來,他會跑掉并朝別人扔石頭?!钡窃谖覀兣c孩子相處的時間里,他從來沒有跑掉,也沒有朝人扔石頭。如果他被綁起來,他偶爾會朝別人扔石頭,但也并不是想傷害誰,只是一種開玩笑的舉動。

    幾天后,我們又去探望了孩子,發(fā)現(xiàn)他仍被家人綁在那里。但是這次我們又發(fā)現(xiàn)了新的情況。在與鄰居的交談中我們得知,孩子的母親本身也遭受來自父母的暴力;她每天都被迫到田里勞作,把賺得的錢帶回家;她的母親不會接觸孩子或給孩子喂飯,即使孩子一直哭喊著要食物,而她自己除了把孩子綁起來別無選擇。

    Confrontation

    質(zhì)證

    In the case of this child, the nature of abuse faced by him was of both Neglect and Abandonment. The mother of the child, his primary care-giver, failed to fulfil her care giving responsibilities, such as giving him daily meals; a protective and nurturing environment; and his medicines for the convulsion disorder which had severely affected his physical health and well-being. The child although not deserted, faced abandonment as his family members were unable to fulfil their obligations as care-givers. His rights as a child and as a person with disability were violated at the same time. The UN Convention of the Rights of Persons with Disabilities talks about “discrimination on the basis of disability” meaning any “distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or 1ifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.” The child’s movement was restricted due to his disability (he was kept tied), he was treated differently from his non-disabled elder sister; and he was denied reasonable accommodation by his family who kept him tied outside the house in an undignified and inhumane manner.

    在這個男孩的案例中,他所面對的虐待既有忽視又有放棄。男孩的母親是首要的照料者,未能履行其照料的責任,如為男孩提供每日三餐;一個保護性的、培育性的環(huán)境;以及治療驚厥的必要藥物,因為疾病已經(jīng)嚴重影響了男孩的身體健康和幸福。盡管男孩并未遭到遺棄,他仍然算是被放棄了,因為他的家庭成員不能履行作為照料者的職責。他作為兒童的權(quán)利和作為殘疾人的權(quán)利被同時侵犯了。聯(lián)合國《殘疾人權(quán)利公約》所提到的“基于殘疾的歧視”指“基于殘疾的區(qū)別、排斥和限制,其目的或影響是,在與他人平等的基礎上,損害或抵消人類認知、享受、實踐在政治、經(jīng)濟、社會、文化、民事和其他任何領(lǐng)域的權(quán)利和基本自由。它包含各種形式的歧視,包括對合理膳宿的否定。”男孩的行動因為他的殘疾而受到限制(他被捆起來),他受到與他的姐姐不同的待遇;他被家人剝奪了合理膳宿的權(quán)利,他們以一種毫無尊嚴和非人道的方式把他綁在房子的外面。

    Article 2 of the United Nations Convention on the Rights of Child states that all children have the rights mentioned in the Convention no matter who they are, where they live, what their parents do, what language they speak, what their religion is, whether they are a boy or girl, what their culture is, whether they have a disability, whether they are rich or poor. These rights are universal and applicable to every child in the world. Article 19 states that a child has the right to protection from being hurt or mistreated, in “body or mind”; Article 23 states that if a child has a disability he/she is entitled to special education as well as the other rights mentioned in the Convention so that he/she can “l(fā)ive a full life”; Article 24 states that a child has the right to best health care, nutritious food, a clean and safe environment; Article 24 states that a child is entitled to help from the government if he/she is in need or poor. Article 39 states the right to help in case of hurt, neglect or maltreatment.

    All the aforementioned provisions and rights were violated and denied in the case of the child, which reflects that although the legal provisions are there, there is somewhere a gap and the implementation of the same is not taking place. Due to the cultural perception of disability and the societal attitudes, persons with disability continue to face victimization despite there being sufficient legal provisions and various NGO’s -- national and international -- working for the cause; there has been little change in the picture. The child, in this case due to his disability -- a condition beyond his control -- became a victim of ignorance; lack of awareness; attitudinal barriers; lack of access to facilities which he is rightfully entitled to, stigmatization; lack of social support and exclusion.

    A victim maybe defined as a person who suffers direct or threatened physical, emotional or financial harm as a result of an act by someone else. According to studies, children with disabilities may face three kinds of victimization: a) Peer Assault and Bullying; b) Sexual Victimization; and c) Maltreatment. The studies have also shown that children with disabilities are at an increased risk of victimization, maltreatment and neglect. This elevated risk is often attributed to the care-giving burden causing stress for the parents. This in the context of this case study was one of the contributing factors for the neglect of the child, since his mother, in addition to looking after him, had to earn, run the house and attend to other household chores, too. Reasons for maltreatment often could be aversion to certain traits/behaviours that the child may manifest as a part of his/her disability, which make socialization and caregiving more troublesome.

    聯(lián)合國《兒童權(quán)利公約》第二條款聲明兒童享有《公約》中所述的權(quán)利,無論他們是誰,他們身居何處,他們的父母從事何職業(yè),他們說何種語言,他們信仰何種宗教,他們是男是女,他們擁有何種文化,他們是否殘疾、是否貧窮。這些權(quán)利統(tǒng)一適用于每一個兒童。第十九條款聲明兒童享有被保護不受傷害和虐待的權(quán)利,無論“肉體還是精神”;第二十三條款聲明如果一個兒童患有殘疾,他/她理應接受特殊教育和享受其他《公約》中提到的權(quán)利,這樣可以使他/她“度過完整的人生”;第二十四條款聲明兒童有享受最優(yōu)的健康醫(yī)療、營養(yǎng)飲食和清潔、安全的環(huán)境的權(quán)利;第二十四條款還聲明兒童在需要救助或處于貧困中時應得到政府的幫助;第三十九條款聲明兒童在傷害、忽視和虐待中享有被幫助的權(quán)利。

    所有上述的法條和權(quán)利在男孩的案例中全部被侵犯和否定,這反應了盡管有相關(guān)的立法,但仍有執(zhí)行方面的參差不齊。由于文化認知和社會態(tài)度等原因,盡管有充足的法律法規(guī)和致力于此的國內(nèi)和國際的非政府組織,殘疾人仍然是受害者。此案例中的男孩由于殘疾——一個超出其能力范圍的情況——成為了忽視、意識缺乏、態(tài)度障礙、必備基礎設施的限制、污名化、社會支持缺乏和排斥的受害者。

    受害者可以被定義為因他人行為而直接或潛在地在身體上、情感上或財務上遭受傷害的人。研究表明殘疾兒童可能遭受三種類型的傷害:1.同輩侵犯和欺辱;2.性侵害;3.虐待。研究還顯示殘疾兒童遭受傷害、虐待和忽視的風險呈上升趨勢。這種上升趨勢通常是由于照料殘疾兒童的負擔給父母帶來的壓力。在這個案例中,這也是造成忽視男孩的一個原因,因為他的母親除了照料他之外還需要掙錢、照看房屋和做家務。虐待的原因可能是因為反感兒童所患的殘疾而帶有的某種特點/行為,這使社會化和給予照料更為困難。

    Theoretical discourse

    理論論述

    The case study could be better understood from a theoretical perspective using the Ecosystems theory. The ecosystems perspective focuses on the interplay between an individual and his/her environment. In order to understand the functioning of an individual, it is essential to understand his/her environmental context. As per Bronferbrenner, in order to understand human development one must consider the individual’s entire ecological system, which is composed of five socially organized subsystems. The Microsystem which is the most basic system referring to the individual’s immediate environment (parents, siblings, peers etc.). The Mesosystem consists of the relationship between the various environments and settings the individual lives within. The Exosystem consists of the various external factors that influence the individual’s development such as parents’ employment, mass media or policy makers. The Macrosystem consists of the individual’s cultural beliefs, customs and laws which affect him/her as well as his/her family functioning. Lastly, the Chronosystem refers to the time and generation in which the individual is living.

    In context of the case study, we see how the interaction between the various systems affects the child making him a “victim.” The individuals such as the grandparents, the mother and the sister present in the child’s immediate environment were detached from the child, thus the child faced neglect. The child and his family were also disconnected from their surrounding environment and the community since there was conflict; external factors such as his mother’s marital status and socio-economic position also affected his circumstances. Due to the lack of social support received by the mother and her own existing circumstances (separation from husband; violence inflicted by parents), the mother could not provide the required care to the child. The macrosystem in this context plays an essential role, since the cultural and attitudinal perception of disability also affected the manner in which the child was treated. In a larger context, the Macrosystem -- the cultural beliefs and perceptions of persons with disabilities -- contribute to their victimization, exclusion and marginalization in society.

    從生態(tài)系統(tǒng)理論的角度出發(fā)可以更好地理解本案例分析。生態(tài)系統(tǒng)的觀點側(cè)重于個人與其周邊環(huán)境的相互作用。為了理解個人所發(fā)揮的作用,必須要理解他/她所處的環(huán)境背景。根據(jù)布朗芬布倫納的理論,為了理解人類發(fā)展,我們必須考慮個人所處的整個生態(tài)系統(tǒng),它由五個社會性的次級系統(tǒng)組成。其中,微觀系統(tǒng)是最基礎的系統(tǒng),指個人所處的直接環(huán)境(父母、姐妹、同輩等)。中間系統(tǒng)是指各個微系統(tǒng)之間的聯(lián)系或相互關(guān)系。外層系統(tǒng)包括影響個人發(fā)展的各種外界因素,如父母的就業(yè)、大眾傳媒或政策制定者。宏觀系統(tǒng)指影響個人及其家庭運轉(zhuǎn)的文化信仰、習俗和法律。最后,時間緯度指個人所處的時間和世代。

    在本案例的背景中,我們可以看見各種系統(tǒng)對男孩的影響從而使他成為一個“受害者”。處于男孩的直接環(huán)境中的祖父、母親和姐姐與男孩相脫離,因此男孩面臨忽視。因為沖突,男孩和他的家庭也與周圍的環(huán)境和社區(qū)脫節(jié);他母親的婚姻狀態(tài)和社會經(jīng)濟地位等外部原因也影響了他所處的環(huán)境。由于他的母親和其所處的環(huán)境(與丈夫分開;遭受父母的暴力)缺乏社會的幫扶,因而不能為男孩提供必要的照料。宏觀系統(tǒng)在這個背景下發(fā)揮了關(guān)鍵的作用,因為對殘疾的文化識別和態(tài)度也能夠影響對待男孩的方式。在一個更大的背景下,微觀系統(tǒng)——文化信仰和對殘疾人的文化感知——導致他們在社會中遭受傷害、排斥和被邊緣化。

    Another perspective that could be used to view this case could be that of Erving Goffman’s theory of Stigma. Goffman viewed stigma as a process based on the social construction of identity and individuals who got associated with a stigmatized condition passed from being “normal” to “discredited” or “discreditable.” Stigmas often lead to negative attitudes giving rise to prejudices and discrimination. Goffman looks into both the social and psychological elements in the process of stigmatization and the psychological impact it has. Stigmatization can be overt. It can manifest as aversion to interaction, avoidance, social rejection, discounting, discrediting, dehumanization, and depersonalization of others into stereotypic caricatures. Goffman identified three kinds of Stigma -- stigma of character traits (mental disorders, homosexuality, unemployment); physical stigma (physical deformities of the body) and stigma of group identity (race, religion, caste). Goffman, as an example states that meeting the care needs of a child with a disability has a significant impact upon family members’ pre-existing work and social life patterns, but in addition families may also experience what is termed “courtesy stigma” (or “stigma by association”) because of their direct relationship to the child. The family will then have to cope with their own feelings of shame or guilt, and may attempt to distance themselves in various ways from the disability. This in the context of the above stated case study becomes very relevant.

    另外一個可以用于分析本案例的理論是伊坦·戈夫曼的污記學說。戈夫曼將污記視為是一個過程,基于社會對于身份的構(gòu)建,和個人與有污記的狀況相聯(lián)系,逐漸從“正常”過渡到“不足信的”,而后直至“恥辱的”。戈夫曼深入研究了污記化過程的社會和心理因素以及其心理學影響。污記化可以是公開性的。它可以通過厭惡到互動、回避、社會排斥、失信、抹黑、去人性化、人格解體等形式表現(xiàn),直至成為刻板的形象。戈夫曼將污記分為三類——性格特質(zhì)的污記(情緒失常、同性戀、失業(yè)),身體的污記(身體畸形和缺失)和集體身份的污記(種族、宗教、種姓)。戈夫曼舉例說明照料殘疾兒童會嚴重影響家庭成員的工作和社會生活模式,另外,因為家庭成員與兒童的直接關(guān)系,他們也可能經(jīng)歷所謂的“禮節(jié)污記”(或“通過聯(lián)系構(gòu)成的污記”)。家庭成員不得不應對他們自身羞辱或愧疚的情緒,還可能嘗試各種方式使自己遠離殘疾。這一點在上述的案例研究中表現(xiàn)的十分明顯。

    Conclusion

    結(jié)論

    The stigma attached to disability and persons with disability along with the influence of various factors such as cultural and societal norms gives rise to negative attitudes and perceptions and societal barriers, which lead to the victimization of persons with disability. They more than often suffer neglect, abandonment and maltreatment, due to the lack of awareness regarding disability and the manner in which persons with disabilities have been perceived over the centuries. Although there has been a shift in the theoretical discourse on disability from the Charity Model to the Rights-based Model and there are plenty of policies and laws that push for the equal rights of persons with disability, little has changed in ground realities. Largely, because of lack of access to information and health services; lack of awareness and understanding about disability.

    與殘疾和殘疾人有關(guān)的污記,以及如文化和社會規(guī)范等因素的影響加深了消極態(tài)度和認知,擴大了社會障礙,這導致殘疾人遭受傷害。由于人們?nèi)狈埣驳恼J識,以及幾個世紀以來所形成的對殘疾人的認知,殘疾人更頻繁地遭受忽視、放棄和虐待。盡管殘疾的理論論述經(jīng)歷了從慈善模式到權(quán)利為本模式的轉(zhuǎn)變,并且有許多政策和法律推動殘疾人的平等權(quán)利,實際情況卻鮮有變化。一般來說,這是由于缺乏獲取信息和健康服務的渠道;和缺乏對殘疾的認識和了解。

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