Being a man
Being a man
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作为一个男人
DOI：
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发表时间：
2014
期刊：
影响因子：
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通讯作者：
Sharon. Townson
中科院分区：
文献类型：
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作者：
Shawn. Sobers;Sharon. Townson
在接拍这部电影之前，我听说过肌肉营养不良症，但杜兴这个名字对我来说很陌生。在阅读有关这种疾病的信息，并聆听与研究人员交谈的 20 名男性的音频采访时，我对医学科学的进步如何为这个新兴社区提出了一系列新的问题感到震惊，例如——在一个以前只支持患有这种疾病的男孩和年轻人的系统中，成年男性如何与 DMD 相处？
诸如成为男人后与父母之间的关系等考虑因素；以及他们和他们的照顾者之间的性别动态，以前在很大程度上是反思性对话的未知领域，而形成爱和性关系以及组建家庭的现实超出了 DMD 患者的生活经历，因此没有被现有的支持他们的系统所照顾。尽管如此，正如这项研究表明的那样，医疗和支持系统是时候适应这些新的现实了。这项研究中的男性以一种“就事论事”的方式坦诚、幽默地谈论了他们的经历，这会让任何试图同情他们的人放下心来。这种“实事求是”的精神是我们制作电影风格的起点。
Before being approached to make this film I had heard of muscular dystrophy, but the name Duchenne was new to me. On reading up about the condition, and listening to the audio interviews with the 20 men who talked to the researchers, I was struck by how advances in medical science are creating new sets of questions for this emerging community to engage with, for example - how do grown men negotiate living with DMD in a system which was only previously equipped to support boys and young adults with the condition?
Considerations such as the relationship between them and their parents as they become men; and the gender dynamics between them and their carers, were previously largely unchartered territory for reflective conversation, and the reality of forming loving and sexual relationships and starting a family, was beyond the lived experiences of those with DMD, and therefore not catered for by the systems that were in place to support them. Though as this research shows, it is time for the medical and support systems to adjust to these new realities. The men in this study talked about their experience with candour, humour, and in a ‘matter of fact’ way, which would disarm anyone who attempted to take pity on them. This ‘matter of fact’ ethos was the starting point which informed the style of how we made the film.