A family’s hope of ending discrimination 英國家庭希望消除對白化症患者的歧視

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A family’s hope of ending discrimination 英國家庭希望消除對白化症患者的歧視

學習要點

有關 「discrimination(歧視)」 的詞彙

邊看邊答

What is albinism?

文字稿

Since birth, Naseem, Haider and their four siblings have had to face severe bullying and discrimination because of the way they look.

自出生以來,納西姆、海德爾和四個兄弟姐妹就不得不面對嚴重的欺凌和歧視,這都是因為他們的外貌。

All six of them have albinism – which is a genetic condition that affects the production of melanin – the pigment which gives colour to the skin, hair and eyes.

他們六個人都患有白化症,這是一種影響黑色素生成的遺傳病,黑色素是給予皮膚、頭髮和眼睛顏色的色素。

People with albinism often have white or very light blonde hair and also suffer from other medical conditions including eye problems.

白化症患者通常有白色或非常淺的金色頭髮,還受到其它各種疾病的困擾,比如視力問題。

Naseem Akhtar
We have poor eyesight, so really severe sight that can’t be corrected with glasses. So, we are unable to drive. As soon as the temperature starts rising, you know, we have to start putting the sunblock on, so that we don’t burn and get skin cancer.

納西姆‧阿克塔爾
「我們的視力很差,這種嚴重的視力問題無法通過戴眼鏡矯正。所以,我們開不了車。一旦氣溫開始上升,我們就必須得塗上防曬霜,這樣才不會因曬傷而患皮膚癌。」

The siblings inherited the condition from their parents and despite the challenges the family has faced, they say they all have grown to like their condition and are proud of their identities.

兄弟姐妹從他們的父母那裡遺傳了這種疾病,儘管這家人曾因此面臨各種困難,但他們表示都已經漸漸地喜歡上了這個疾病,並為自己的身份感到自豪。

Naseem Akhtar
What I like about it is that it gives me a unique outlook on life. I connect with more people because of my uniqueness.

納西姆‧阿克塔爾
「我喜歡的是它給了我獨特的人生觀。因為我與眾不同,才與更多人建立了聯繫。」

And it is this uniqueness that has helped Naseem and her family to win the Guinness Book of World Records title for having the most siblings with albinism.

正是這個與眾不同的特點幫助納西姆和她的家人獲得了這個吉尼斯世界紀錄的稱號:患白化症兄弟姐妹人數最多的家庭。

Naseem Akhtar
We knew we were a unique family and to celebrate our uniqueness, I thought let’s do this and winning the Guinness World Record is amazing.

納西姆‧阿克塔爾
「我們知道我們這家人與眾不同,為了慶賀這一點,我想,就去申請吧,結果獲得了這一稱號,太棒了!」

The siblings say that they are glad that none of their children have this condition and wouldn’t have to go through any of the discrimination and challenges that they have had to face.

這些兄弟姐妹說,很高興在自己的兒女當中,沒有一個患這種疾病,不會經歷任何他們曾受遭遇過的歧視和困難。

Musarat Begum
I’m really happy because he wouldn’t have to experience the bullying, or he wouldn’t go through the vision difficulties that I go through, or I have been through in my past.

穆薩拉特‧貝格姆
「我很高興,因為他不會經受欺凌,也不會有我一直以來遇到的視力上的障礙。」

The family hope that by sharing their story and experiences they can educate people about albinism and help remove the stigma attached to it.

這家人希望通過分享他們的故事和經歷,可以向大眾普及和白化症有關的知識,並幫助消除其帶來的恥辱感

詞彙

to face 面對

bullying 欺凌

uniqueness 與眾不同,獨特性

educate 教育,普及

stigma 恥辱感

問題答案

Albinism is a genetic condition that affects the production of melanin.