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唐氏综合症(又称先天愚型)是妨碍婴儿智力和体能发展的先天性遗传病症。患者面容特殊,绝大多数会表现出严重智能障碍并伴有多种脏器异常的病征。患上这种疾病无疑是不幸的,但只要保持乐观积极的态度,这个病也并非想象中那么可怕。24岁、来自北爱尔兰贝尔法斯特的尼古拉斯为我们讲述了他的经历。
Growing up
Growing up with Down’s syndrome[综合病症] was ordinary. It’s
part of who I am. With Down’s syndrome or not, I want people to know I’m not special or different. I went to mainstream schools in Belfast. I loved being around other people and
making loads of friends. It felt good to achieve my goals, learn about different subjects and develop my own skills. The bad bit about school was being bullied[欺侮]. They had no right to make fun of the condition I have. It hurt, but it didn’t break my heart and soul. Bullies are just people, and I had to accept that life can’t always be easy.
Gaining Independence
Now that I’ve left school, I’ve moved into independent
living quarters[居住区] in
Belfast. People of all ages live there. I love the area I live in, and I’m independent. We do our own cleaning and cooking and share all the tasks. For other young people who would like to live independently, I would say it’s a great idea. It’s hard at first, but the time comes when you’re more independent within.
I work in the Law Courts three days a week, addressing[写姓名地址] labels for
envelopes and doing odd jobs as a handyman[做修理等零活的人]. My other job is admin[行政] work at Heat (a heating company). I keep my personal life separate from work, and always have a good attitude towards working.
Understanding Down’s Syndrome
I come across lots of misconceptions[误解]
about people with Down’s syndrome. It’s
common for people to think that we are
always happy and affectionate[有感情的], but I can have the same feelings and moods as everyone else! It’s often thought that people with Down’s syndrome can’t form relationships, don’t live very long and can’t achieve ordinary life goals, but those things aren’t
true. I have all sorts of relationships, from friendships to loving and disliking people! People with Down’s syndrome can live up to 60 years old, and can achieve ordinary life goals. Many now attend mainstream schools, pass GCSEs注 and live independently. I’d
encourage other young people to talk to
people with Down’s syndrome to get to know and understand them.
My Life Achievements
I don’t feel that having Down’s syndrome has held me back[阻碍发展] from anything in life. Through school, college and work I have achieved lots of things - and I have a great social life. I compete at gymnastics, golf and football, and I also do drama.
I would love to be a famous public speaker, but mainly, I see my future as having a good job, having my own flat and getting married.
成长过程
身患唐氏综合症的成长经历其实没什么特别,它是我的一部分。不管是否患有唐氏综合症,我都希望人们知道我并不特殊,也与常人没有什么不同。我在贝尔法斯特的普通学校上学。我喜欢和其他人在一起,也喜欢交很多朋友。能够实现目标,学习不同科目,并培养自己的技能,这感觉实在太好了。上学不好的一点就是被欺负。他们无权嘲笑我的处境。我会受到伤害,但并没有灰心失意。欺负我的人也是人,我必须接受生活并不容易这个事实。
学习独立
现在我离开了学校,搬进了贝尔法斯特一个独立居住区。这里居住着各种年龄的人。我喜欢现在住的地方,生活也无需依赖别人。我们各自清洁,煮饭,分担所有任务。一些年轻人希望独立生活,我认为这是一个很好的主意。刚开始的时候不容易,但渐渐你会变得更独立。
我每周到法庭工作3天,在信封上写标签,也做一些琐碎的修理工作。我还在Heat公司(一家暖气公司)从事行政工作。我把私人生活和工作分开,对工作总是保持良好的心态。
了解唐氏综合症
我遇到很多对唐氏综合症患者的误解。许多人觉得我们总是无忧无虑、和蔼可亲,但我也有和其他人一样的感觉和情绪!人们常常认为唐氏综合症患者不能交到朋友,活不长,也不能实现一般的人生目标,但这些想法都是不正确的。我和周围的人有着各种各样的关系,包括朋友、恋人和讨厌的人!唐氏综合症患者可以活到60岁,也能实现一般的人生目标。许多人现在都到普通学校上学,通过GCSE考试,并独立生活。我鼓励其他年轻人多与唐氏综合症患者交谈,去认识他们,了解他们。
我的成就
虽然身患唐氏综合症,但我并不觉得这个病阻止我做任何事。在学校、职业学院和工作中,我完成了很多事情——我的社交生活也相当丰富。我参加体操、高尔夫球和足球比赛,并参加戏剧表演。
我希望成为一位著名的演讲家。但主要的,我希望将来有一份好工作,拥有自己的房子,然后成立自己的家庭。
注:GCSE的英文全称是General Certificate of Secondary Education,是英国学生完成第一阶段中等教育所参加的主要会考。
Growing up
Growing up with Down’s syndrome[综合病症] was ordinary. It’s
part of who I am. With Down’s syndrome or not, I want people to know I’m not special or different. I went to mainstream schools in Belfast. I loved being around other people and
making loads of friends. It felt good to achieve my goals, learn about different subjects and develop my own skills. The bad bit about school was being bullied[欺侮]. They had no right to make fun of the condition I have. It hurt, but it didn’t break my heart and soul. Bullies are just people, and I had to accept that life can’t always be easy.
Gaining Independence
Now that I’ve left school, I’ve moved into independent
living quarters[居住区] in
Belfast. People of all ages live there. I love the area I live in, and I’m independent. We do our own cleaning and cooking and share all the tasks. For other young people who would like to live independently, I would say it’s a great idea. It’s hard at first, but the time comes when you’re more independent within.
I work in the Law Courts three days a week, addressing[写姓名地址] labels for
envelopes and doing odd jobs as a handyman[做修理等零活的人]. My other job is admin[行政] work at Heat (a heating company). I keep my personal life separate from work, and always have a good attitude towards working.
Understanding Down’s Syndrome
I come across lots of misconceptions[误解]
about people with Down’s syndrome. It’s
common for people to think that we are
always happy and affectionate[有感情的], but I can have the same feelings and moods as everyone else! It’s often thought that people with Down’s syndrome can’t form relationships, don’t live very long and can’t achieve ordinary life goals, but those things aren’t
true. I have all sorts of relationships, from friendships to loving and disliking people! People with Down’s syndrome can live up to 60 years old, and can achieve ordinary life goals. Many now attend mainstream schools, pass GCSEs注 and live independently. I’d
encourage other young people to talk to
people with Down’s syndrome to get to know and understand them.
My Life Achievements
I don’t feel that having Down’s syndrome has held me back[阻碍发展] from anything in life. Through school, college and work I have achieved lots of things - and I have a great social life. I compete at gymnastics, golf and football, and I also do drama.
I would love to be a famous public speaker, but mainly, I see my future as having a good job, having my own flat and getting married.
成长过程
身患唐氏综合症的成长经历其实没什么特别,它是我的一部分。不管是否患有唐氏综合症,我都希望人们知道我并不特殊,也与常人没有什么不同。我在贝尔法斯特的普通学校上学。我喜欢和其他人在一起,也喜欢交很多朋友。能够实现目标,学习不同科目,并培养自己的技能,这感觉实在太好了。上学不好的一点就是被欺负。他们无权嘲笑我的处境。我会受到伤害,但并没有灰心失意。欺负我的人也是人,我必须接受生活并不容易这个事实。
学习独立
现在我离开了学校,搬进了贝尔法斯特一个独立居住区。这里居住着各种年龄的人。我喜欢现在住的地方,生活也无需依赖别人。我们各自清洁,煮饭,分担所有任务。一些年轻人希望独立生活,我认为这是一个很好的主意。刚开始的时候不容易,但渐渐你会变得更独立。
我每周到法庭工作3天,在信封上写标签,也做一些琐碎的修理工作。我还在Heat公司(一家暖气公司)从事行政工作。我把私人生活和工作分开,对工作总是保持良好的心态。
了解唐氏综合症
我遇到很多对唐氏综合症患者的误解。许多人觉得我们总是无忧无虑、和蔼可亲,但我也有和其他人一样的感觉和情绪!人们常常认为唐氏综合症患者不能交到朋友,活不长,也不能实现一般的人生目标,但这些想法都是不正确的。我和周围的人有着各种各样的关系,包括朋友、恋人和讨厌的人!唐氏综合症患者可以活到60岁,也能实现一般的人生目标。许多人现在都到普通学校上学,通过GCSE考试,并独立生活。我鼓励其他年轻人多与唐氏综合症患者交谈,去认识他们,了解他们。
我的成就
虽然身患唐氏综合症,但我并不觉得这个病阻止我做任何事。在学校、职业学院和工作中,我完成了很多事情——我的社交生活也相当丰富。我参加体操、高尔夫球和足球比赛,并参加戏剧表演。
我希望成为一位著名的演讲家。但主要的,我希望将来有一份好工作,拥有自己的房子,然后成立自己的家庭。
注:GCSE的英文全称是General Certificate of Secondary Education,是英国学生完成第一阶段中等教育所参加的主要会考。