我和我的妥瑞氏

  • 剧情片生活
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  • 影片将镜头对准妥瑞氏症,纪录片跟随拍摄了两位妥瑞氏…影片将镜头对准妥瑞氏症,纪录片跟随拍摄了两位妥瑞氏症患者的真实故事,直面了妥瑞氏症带来的病耻感,以及抽动所带来的生活困境。摄制组通过一年的记录,呈现了两位主人公是如何通过自身对抗他人的误解,并与自身达成和解的故事。自患病起,影片的主人公苗誉齐的父母便带他在全世界四处求医。他辗转在各大医院,同时也因为妥瑞氏症所带来的叫声和抽动不断被学校劝退。但苗誉齐的父母从未放弃,用陪伴和爱鼓励他重新回归社会。通过拍摄,苗誉齐第一次遇见了同样患有妥瑞氏症的其他人,他的人生就此开始改变。另一名主人公刘亦果同样是多年的妥瑞氏症患者,因为疾病,她的求职之路充满坎坷,每次面试的最后,常会因为妥瑞氏症而遭拒绝。妥瑞氏症,作为一种神经系统障碍,并没有被定义为精神残疾,也没有像残疾证那样的就业优待。但刘亦果从未放弃,她决心用行动证明妥瑞氏症患者,同样能和正常人一样工作、生活。在拍摄两位主人公的故事之余,摄制组也向全网发起了更多的妥友采访征集。这一次,数十位妥瑞氏症患者抛下病耻感,勇敢直面镜头,讲述了他们和妥瑞氏症共处的故事。“那天阳光明媚,谢书豪和露真华两位导演采了妥瑞氏症群体,激动地和我说,有人专门为了这个采访从台湾飞过来。”导演秦博回忆,大家中午结束后一起吃饭,都控制不住自己,食堂里此起彼伏的声音,“那个时候我是一个异类。我突然有一种幸福感,就是要做社会现实题材的纪录片,再难也要做。”摄制组希望,通过这样的行动和参与者的讲述,帮助更多的年轻妥瑞氏症患者和他们的家长,走出妥瑞氏症的病耻感,正确对待疾病,减轻心理焦虑,并呼吁公众正确认识和对待身边的抽动症患者。详情

我和我的妥瑞氏评论

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