我与阅读障碍相伴的一生|My Life With Dyslexia So Far
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阅读障碍是一种常见的学习障碍，会导致阅读时对字词的理解困难。这一期我们讲述的是一个关于阅读障碍的人生故事。文章结尾附上了一些关于阅读障碍的科普信息，供读者参考。（文章中人物名称皆为化名）
Dyslexia is a common learning disability that causes people to have difficulty interpreting words when reading. This issue is written from the point of view of an individual with dyslexia whom we have interviewed. In this article he shares his story about how dyslexia has affected him. Some facts about dyslexia and further problems caused by dyslexia are listed after this first-person narrative. (The names in this issue have been changed to protect the identity of the interviewee.)
作者 | Writers: Aicha Maryam K., Abby Clark
翻译 | Translator: Yifan Kong
插图 | Illustrator: Nipun Kudalkar
阅读障碍患者眼中的文字 | 左上：Daniel Britton；左下：Wikipedia；右上：geon；右下：《地球上的星星》图片来源:
https://mp.weixin.qq.com/s/153_wYfp3FErI855G4qkMQ
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我叫鲍比，我出生在孟买，印度最繁华的大都会之一。我喜欢艺术、手表和汽车，我喜欢食物和肉类，我喜欢博物馆和长外套。我有一些好朋友，我的家人很爱我。
我在14岁的时候确诊了阅读障碍。那时候身边的许多人根本都不理解什么是阅读障碍，我完全能够理解Ta们的想法。毕竟Ta们大多数人每天都还在为生计发愁，哪儿还顾得上操心一个家境优渥的小孩的精神障碍。
是的，我家境优渥。我爸是当地著名的医生，我们家有自己的医院。我比学校里大多数的同学家庭条件都要好一些，我猜这大概是为什么Ta们当中的许多人都认为我的阅读障碍只是用来掩盖我的懒惰和愚蠢的一个借口。
My name is Bobby Possumcods. I was born in Mumbai, one of the biggest metropolises in India. I like art and watches and cars. I like food and meat. I like museums and long coats. I have several friends. My family loves me.
I was diagnosed with dyslexia when I was 14. Many people around me didn’t understand what dyslexia was, which I totally understand. They were primarily focused on making ends meet - no one bothered to care about the dyslexia of a privileged kid.
Yes, I was privileged. My father is a famous doctor, and we had our own hospital. I was more privileged than most of my peers in school, so this may be why many of them thought my dyslexia was just an excuse to cover up laziness and stupidity.
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我记得有一次我在课堂上捣蛋，老师很生气，她当着全班的面说：“别以为你妈觉得你有这那那这的困难，我们整个学校就需要纵容你！”从那之后，全校都知道了我有阅读障碍。可是，我的境遇一点儿也没得到改善。
印度的教育系统给有阅读障碍的学生提供了一些额外的支持。比如一场2个小时的考试，我通常比别人多20至30分钟来答题。但是有一次数学考试，监考老师拒绝让我晚20至30分钟交卷。我走出教室，我的朋友斯图尔特看我战战兢兢的样子，便去找监考老师理论，帮我争取到了应得的额外时间。我们回到了教室，这时教室里只剩我在答题。斯图尔特叫他的朋友们把守住走廊，确保没有人经过，又叫监考老师站到角落去，不要多管闲事。斯图尔特看了一眼我的试卷，说：“你这个笨蛋！你会挂科的！”。于是他从我的背包里拿出了课本，告诉我怎么写。我猜，很多人听到这个故事的时候大概只会觉得，这些家庭条件好的小孩又在随意践踏规则。无所谓，我人生的整整前20年都在努力解释，试图获得他人的理解，但从未被理解。我只好告诉自己：我不在乎。
I remember one time I was misbehaving in class, and the teacher got angry with me. In front of the whole class, she said to me: “Just because your mom thinks you have certain issues in life, that doesn’t mean that we as an institution have to deal with your issues.” Ever since that moment, my dyslexia became famous among my peers. My situation, however, did not improve.
The Indian education system provides some support to dyslexic students once they are diagnosed. I usually got 20-30 more minutes when taking the 2-hour exams. One time, however, during a math exam, the professor refused to give me the extra time. As I walked out of the classroom, my friend, Stuart, was waiting for me. He saw me trembling, clearly shaken-up. Because of this, he decided to approach the examiner and argue that I should be given the extra time. We walked into the classroom, so it was just me and my paper. Stuart asked his friends to stay in the hallway to make sure no one walked by the door. Then, he asked the professor to stand in the corner. Stuart took a look at my paper, said:“You f**king idiot! You’re going to fail!”. Then he took the textbook out from my backpack and referred to it, and told me what to write on the paper. I suppose many people would think this is just another example of privileged kids bending the rules for their own benefit, but it’s okay. I spent the first 20 years of my life trying to explain myself to people but was never understood. In times like these, when I felt misunderstood, I gradually began repeating a single phrase to myself: “I don’t care.”
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没有人知道我有多刻苦学习。我高中的时候凌晨4点起床，晚上11点睡觉。日复一日，没有周末。家里给我请了很多家教，从早上7点到晚上9点。我通常只在下午去学校，去参加那些考试。因为在家自学反而能学得更多。反正我也讨厌学校。可是尽管如此努力，我最终也只考了个一般般的成绩。
从小我的学习成绩就很糟糕。个位数的分数对我来说是家常便饭。不过家里人很照顾我的感受，Ta们从不过问我的考试成绩，我考成什么样Ta们都表现得很开心。这些鼓励和支持对我来说意义重大。尤其是作为一个有阅读障碍的人，从小我看到的世界就和别人看到的世界不一样，我自己也和这个世界格格不入。我真的很需要这样的情感支撑来告诉我：不一样也没关系。
No one has any idea how hard I studied in high school. I’d wake up at 4:00 in the morning and go to bed at 11:00 at night. Weekends, during that time, did not exist for me. I also had a lot of private tutors who would come and tutor me from 7:00 AM to 9:00 PM from Monday to Friday. I only went to school in the afternoon to take exams, as this allowed me to study more at home. I hate school anyway. Despite all this strenuous effort to succeed in school, I still only got an average result on the final exam.
Ever since I was young, I’ve never been very good at studying. Single-digit marks were common for me. However, my family has been very supportive. They never asked about my grades and were typically happy with the ones I received. This encouragement and support mattered a lot to me, especially growing up as a dyslexic person. I see the way in which the world functions differently from most people. I, as a dyslexic individual, also function in a different way from others. That is why it was so important for me to have this emotional support system; it showed me that it’s okay that I do things in my own way.
Name: Tram | Photo by Nipun Kudaldar
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我自小对历史和文化兴趣浓厚。儿时，爸爸经常带着我和哥哥一起看各种各样的纪录片。迄今为止，看纪录片仍旧是我最大的爱好之一。我也很喜欢阅读历史和文化相关的书籍。虽然，阅读对我来说很难。
我对历史和文化的浓厚兴趣让我爱上了博物馆并找到了我真正的使命所在。我开始从事艺术品修复及管理的工作并且发现自己莫名地擅长这件事。当我和艺术品一起工作的时候，我的ADHD（注意力缺陷与多动障碍）仿佛消失了，我可以连续工作三四个小时。我一直都很擅长手工活儿，在博物馆工作的时候我不仅修复文物，还帮忙修补家具、刷刷墙什么的。我总是很注重细节，大概因为没什么人在意我生活中的那些细节吧。就像我小时候误以为自己天赋异禀，却没想到我的天赋是阅读障碍症。
History and culture intrigue me. When I was young, I watched a lot of documentaries with my dad and brother. To this day, it’s still one of my favourite things to do. I also like reading books regarding history and culture, despite the fact that reading is difficult for me.
My interest in history and culture led me to museums where I later on found my calling in life. Through museums, I started working on artwork conservation. As it turns out, I’m really good at it. When working with artwork, I can continuously work for 3 to 4 hours, despite my ADHD. Furthermore, I’ve always been good at handcrafting. When working at the museum, I did not only conserve the artwork but also repaired the furniture and the wall. Maybe it was because no one cared about the details in my life that I became very detail-oriented. I always believed I was gifted when I was young, but I didn’t know what I was gifted with was Dyslexia.
Name: Oil painting be like | Photo by Nipun Kudalkar
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17岁的时候，我按照爸妈的心愿去了一所医科大学。那是我第一次离开家独自生活。学业和生活都格外艰难。我两度抑郁自杀。我的心理咨询师在我人生中最黑暗的这段日子里帮了我许多。甚至连斯图尔特都跟我说，坚持不下去就放弃吧。可是我不想在学期中半途而废。父母在我身上投资了太多太多，我不想辜负他们的期望。我很庆幸自己没死成。我在大学第一年里存活了下来，转去了喜欢的专业。
At the age of 17, I went to a college to study medicine as my parents wished. It was the first time that I lived on my own, without my family. At this darkest time in my life, my counselors helped me the most. Stuart even told me it would be okay to give up in the middle of the semester, but I didn’t want to give up. I didn’t want to leave the semester incomplete. I wanted to live up to my parents’ expectations, as they have invested so much in me. For these reasons, I carried on with my first year. I can now say that I’m glad I didn’t die. I survived the first year and afterwards switched to taking the subjects I like instead of medicine.
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后来，我遇见了一个中国女生。我们常常在一起做关于未来的白日梦。有一次她说将来我们可以在我的家乡建小学，就像中国的那些希望小学一样。我说才不要，我才不要帮助那些会欺负我的孩子们。我倒是想帮助那些有阅读障碍的孩子们，可是我不知道建学校有没有用。阅读障碍更像是一场与自我的内在斗争，只能靠自己。当然我很乐意引导有阅读障碍的孩子们，教他们做事情的方法，建议他们找心理咨询师。但是最终的最终，他们还是要学会和自己和解，找到内心的平静。
我在遇到那个中国女生后不久就告诉过她我的各种学习障碍，但是我不认为她真的理解那都意味着什么。有一次我感到极度沮丧，质问她：我跟你讲了我的学习障碍了，我跟你说了我有阅读障碍和ADHD，为什么你不能去查资料了解一下？其他人不理解没关系，可是你作为我这么亲近的人，你应该理解我！
再后来，她告诉我，她查过资料了，不过是用中文查的。她所获得的大部分的信息都是关于阅读障碍本身的科学介绍。极少有信息提及了阅读障碍带来的其他影响，以及患有阅读障碍的人除了阅读困难之外所经历的种种挣扎。只有她在学术资料库用英文做了研究之后，才开始懂我期盼她理解的是什么。可是那个时候，我们已经分开了。
At one point in my life, I met a Chinese girl. We used to daydream about the future together. One time, she talked about building schools in my hometown, like those Hope Primary Schools (please see endnote) in China. I said I didn’t want to do that, as I didn’t know if schools like that would help dyslexic children like me. I believe dyslexia is more of an inner battle - you need to deal with it yourself. Of course, I would like to guide dyslexic children, teach them ways to do things, and advise them to find counselors. At the end of the day for dyslexic people, though, it’s more important to come to peace with yourself rather than to explain your problem to others.
I told that Chinese girl about my learning disabilities the week after we met, but I don’t think she quite understood my situation. Once I got deeply upset about this and questioned her about it. I said to her, “I told you about my learning disabilities. I told you about my dyslexia and ADHD. Why can’t you do some research and learn about it? It’s okay other people don’t understand me. But as someone who’s this close to me, you should understand!”
Later on, she told me that she did some research after all in Chinese. Most of the information she found only explained the biological background such as the causes and symptoms of dyslexia. Few of the Chinese sources mentioned the chain reactions that come out of dyslexia and the various struggles dyslexic people tend to face in life beyond the difficulty of reading. Only after she conducted some English research in academic databases did she start to get an idea of what I had initially expected her to understand. By that time, however, we had already grown far apart.
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我在这场与阅读障碍的内在斗争里胜利了吗？没有。这是一场每个有阅读障碍的人每天都要经历的内在斗争。每天总会有那么几个瞬间提醒我：我的生活就是如此。
我与我的阅读障碍不断抗争，可以说阅读障碍在一定程度上成就了今天的我，可它并不定义我。我是鲍比，一个一直都对历史和地图充满热爱的人。我最喜欢的艺术家是Akbar Padamsee, Bhupen Kakker和G. H. Ara。我在印度曾是一名文物修复师，并且非常热爱我的工作。我现在居住在加拿大，希望也能获得类似的职业发展及经历。我喜欢跑步，那是我避世的一种方式。我讨厌鸽子，不喜欢质疑我的人。我也不怎么喜欢鲍比这个名字，因为它是假的。可是除了名字，这个故事里的一切，都是真的。
Have I won this inner battle with dyslexia yet? No. Everyone with dyslexia has to fight this battle on a daily basis. There are reminders everyday telling me that this is how it is. This is how my life is.
Despite my struggles with dyslexia, which have helped shape me as a person, dyslexia does not define who I am. I’m Bobby Possumcods. I have been always fascinated with history and maps. My favourite artists are Akbar Padamsee, Bhupen Kakker, and G. H. Ara. I have been an Art Conservator in India, and I am passionate about my work. My present country of residence is Canada, and I hope to gather here the similar career trajectory and acumen as I had in Mumbai. I like to run - that is my escape. I hate pigeons. I don’t like people who doubt me. I don’t like this name Bobby Possumcods, because it’s fake. But except for the name, everything else in this story is true.
*Endnote: Hope Primary Schools are built under the Chinese public service project - Project Hope which aims to bring schools into poverty-stricken rural areas of China, to help children whose families are too poor to afford complete elementary school education.
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关于阅读障碍的一些基本事实
阅读障碍会影响15%-20%的人 (1)。
研究证明阅读障碍与智力水平无关。与许多假设相反，阅读障碍也不会导致懒惰和不敬业 (2)。
阅读障碍会导致人们曲解单词 (2)。阅读障碍导致人曲解字词含义，他们的眼睛可以清楚地看到字词但是大脑却会曲解字词，传达不完整的信息。最常见的一种阅读障碍通常表现在无法辨认字词中小的发音区别，导致无法将发音和字词联系起来，混淆看起来相似的字母，比如把“b”看成“p” (2)。
阅读障碍带的更深层次的问题
有阅读障碍的儿童通常会因为无法和同龄人一样地轻松阅读而觉得自己低人一等 (2)。这很可能是有阅读障碍的青少年被发现大多存在低自尊的原因 (3)。
阅读障碍人群因为阅读困难而自责是十分常见的。他们通常对自己的阅读障碍没有完整的认知，导致产生自我怀疑。这会导致他们无法应对挑战并且增加压力和焦虑感 (4)。
有阅读障碍症的成人最常见的症状是焦虑，这很可能是由在校期间因阅读障碍导致的持续沮丧而造成的。当面对新的局面时，阅读障碍人群通常变得十分焦虑，因为过去的沮丧而预设失败的结局 (5)。
研究表明，一般学生会将成功归因于自身的努力，而有阅读障碍的学生会将成功归因于运气。阅读障碍人群通常在失败时认为自己很愚蠢，并且因为每天在阅读时遇到的困难，会第一时间倾向于认为自己会失败 (5)。
有阅读障碍的儿童具有更高的抑郁风险。“也许是因为他们的低自尊，阅读障碍人群不敢将他们的愤怒的矛头指向周围的环境，于是便指向了他们自己” (5)。
Basic Facts about Dyslexia:
Dyslexia affects 15-20% of people (1).
People of all intelligence levels have been found to have dyslexia, showing that it does not reflect on one’s intelligence. It also does not cause laziness or lack of a work ethic, contrary to what many assume (2).
Dyslexia causes people to misinterpret words, as their eyes will see words clearly, but then their brain misinterprets the words, relaying a flawed message. One of the most common ways in which this occurs is that dyslexics often struggle to recognize small units of sound in words, causing them to fail to connect sounds in words and misinterpret letters for ones that look similar, such as seeing b’s instead of p’s (2).
Further Problems Caused by Dyslexia:
Dyslexic children often feel inferior or inadequate due to not being able to read as easily as their peers (2). This is likely why adolescents with dyslexia have been found to often have low self-esteem (3).
Blaming oneself for difficulties with reading is very common with dyslexic individuals. They often do not have a complete understanding of their dyslexia, causing this self-doubt. This can lead to poor handling of challenges and increased stress and anxiety (4).
Dyslexic adults report that their most common symptom is anxiety. This is likely due to constant frustration in school as a result of dyslexia. When handling new situations, dyslexics often become quite anxious, anticipating failure due to past frustrations (5).
Studies have shown that typical students attribute their successes to their own efforts, whereas dyslexics often attribute successes to luck. Dyslexics often perceive themselves as stupid when they fail, expecting failure in the first place due to the struggles they face daily when reading (5).
When a child has dyslexia, they are at higher risk for developing depression. “Perhaps because of their low self–esteem, dyslexics are afraid to turn their anger toward their environment and instead turn it toward themselves.” (5).
参考资料 | Reference：
Nielsen, Kathleen H. "Dyslexia." The SAGE Encyclopedia of Educational Research, Measurement, and Evaluation, edited by Bruce B. Frey, Sage Publications, 1st edition, 2018.
"Dyslexia." Human Diseases and Conditions, edited by Gale, 3rd edition, 2017.
Study by Mai Eissa (“Behavioral and Emotional Problems Associated with Dyslexia in Adolescence”): http://psychiatry-research-eg.com/texts/ins/HQ2010-10400.pdf
https://dyslexiaida.org/the-dyslexia-stress-anxiety-connection/ (International Dyslexia Association)
http://www.ldonline.org/article/19296/
编辑 | Editors: Joyce, Yifan
排版 | Typesetting: Yifan
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