Berglein Johanna
YAI/National Institute for People with Disabilities, NY, NY 10001-2382, USA.
Prax Kinderpsychol Kinderpsychiatr. 2010;59(1):22-37. doi: 10.13109/prkk.2010.59.1.22.
Anorectal malformations cause life long conditions, making it necessary to find ways of communicating the disability in the social context. Incontinence, regular enemas, genital reconstruction, catheterization and scares are just some of the common difficulties affected people have to live with. Intimate disabilities like anorectal malformations cause feelings of shame and embarrassment, and are taboo in our society. Experiences of rejection or just the fear of it cause affected people to hide their disability. In a qualitative study, affected young adults talked about the impact of this disability on their lifes. All interviewees started to hide their condition sometime in older childhood and early adolescents. After a struggling process, torn between fears of discovery and rejection all of them found ways to communicate their condition. All interviewees described revealing their condition in stages and only to certain social groups. Trust is the main prerequisite for revelation. Trust has two aspects, first the person needs to trust that the information will not be spread and second there needs to be trust that the other person will be able to understand and accept the person despite their condition. Support through family, friends, and peers in a support group are helpful. Important in this process is once ability to accept their own condition.
肛门直肠畸形会导致终身疾病，因此有必要找到在社会环境中传达这种残疾情况的方法。大小便失禁、定期灌肠、生殖器重建、导尿以及疤痕等只是受影响者不得不面对的一些常见困难。像肛门直肠畸形这样的隐私残疾会导致羞耻和尴尬感，在我们的社会中是个禁忌。被拒绝的经历或者仅仅是对被拒绝的恐惧，都会使受影响者隐瞒自己的残疾情况。在一项定性研究中，受影响的年轻人谈到了这种残疾对他们生活的影响。所有受访者在童年后期和青少年早期的某个时候开始隐瞒自己的病情。在经历了一番挣扎后，他们在发现病情的恐惧和被拒绝的恐惧之间左右为难，最终都找到了传达自己病情的方法。所有受访者都描述了分阶段透露自己的病情，并且只向某些社会群体透露。信任是透露病情的主要前提。信任有两个方面，首先，个人需要相信信息不会被传播，其次，需要相信对方能够理解并接受自己尽管有残疾的情况。家人、朋友以及支持小组中的同龄人给予的支持很有帮助。在这个过程中，重要的是要能够接受自己的病情。
