I decided to take my six year old cousin, Sana who suffers from albinism to the Valima ceremony with me. She was looking really pretty with her pink shalwar kameez and her beautiful white hair held with beautiful hair clips. She beamed at me and i smiled at her. We sat on our respected seats, the farthest ones from the stage, where the resplendent bride sat with the beaming groom. Our choice of seats was based on the fact that we had entered pretty late in the venue. I had an evening flight from Karachi to Lahore, and catching up with relatives meant that i entered the venue at 9:00 p.m. just an hour away from the end of the ceremony.
So there we were, ammi, me and Sana taking in the beautiful lights, the bright clothes of guests and my eyes followed my lovely friend. It was her brother’s wedding and believe it or not, we were meeting for the first time. We had been online and phone friends for ages and i had used the excuse of her brother’s wedding to come down to Lahore and finally meet her.
Back to Sana, mom and me. This was the first time i was meeting Sana too. She is a bright, confident and very, very loving child and i was enjoying spending time with her. This enjoyment though was short lived. Within minutes, children started to point at her and whisper to each other. Some came close as if to inspect her and continued staring at her. Some laughed and some ran here and there to tell other children about the strange girl with white hair, white eye brows and pink eyes. None however attempted to speak to her, ask her name, ask us about her , or called to her to play with them. They just stared and stared and stared at her. I tried to talk to a few children, coaxing them to shake Sana’s hands, talk to her and play with her, but by then Sana’s confident personality had shrunk to a troubled child, with her head down and a blank stare on her face. My mother could not take it anymore and scolded the children away.
Soon dinner was served, and we whisked Sana to the dinner table. She did not want to eat anything. I got some nice kulfi ice cream for her, knowing that a child cannot refuse ice cream. But she did. By now ammi and me were concerned and started to softly persuade her to try a spoonful. Within seconds, she started crying. Ammi and I exchanged alarmed glances. Thankfully, her father, who is also my uncle, and who had also come to the ceremony with us, appeared out of nowhere and took Sana in his arms. They strolled away into the main hall of the ceremony which was empty by now.
Later on, we learned that she was upset because of the way the children treated her. She wished she was brown and not white, then no one would look at her this way. *sigh. heart-break *
My uncle held her and told her that she should never feel this way because Allah has made her very beautiful and that is why she is so extra ordinarily special. He told her that other children were just jealous and curious , because they had never seen someone so beautiful. I quipped in, that she looked just like a Barbie doll, so obviously the children couldn’t resist themselves and just had to look at her to admire her.
Next step was to advise her of how to behave when facing such a situation. She needed to smile. She needed to introduce herself. She needed to shake their hands and then suggest any particular game in her mind to play. If they asked her why she was white, or why her eyes were pink, then she could tell them simply that Allah made her different because she was very special to him and that he wanted everyone to look at her and appreciate HIS beauty. :)
Sana and i became great friends , and if it wasn’t me , who was hugging her, it was her hugging me. :) But this episode made me wonder about the life ahead of her and the things she would have to face. It also made me wonder about those albino children who perhaps don’t have supportive parents or don’t find the answers to the questions that plague their mind so easily.
For those who don’t know about albinism, it’s a is a congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of an enzyme involved in the production of melanin. Albinism is associated with a number of vision defects, such as photophobia, nystagmus and astigmatism. Lack of skin pigmentation makes the organism more susceptible to sunburn and skin cancers. So predominately, albinos have pale skin, white hair, white eyebrows and white eyelashes, along with pale blue/ pink pupils in their eyes, owing to which they cannot directly stare at the sky and sometimes it can get even worse. This is the reason albinos are usually seen wearing dark glasses. Sana too has trouble seeing things on the blackboard in her class at school despite the powered spectacles she wears, but the teachers in her school are very supportive.
‘ Sana tries on my shades ‘
What i really want parents to do is educate their children to accept people different from them whole heartedly. Children must be taught to accept and appreciate diversity in all senses, and especially to never, never and i mean never, make fun of people who are not like them.
I decided to search the internet for support groups for Albinos in Pakistan and i did not find There did however exist a webpage for the Albinism World Alliance .
To quote from the website here: http://www.albinism.org/awa.html
“ The Albinism World Alliance (AWA) is a network of albinism support groups in various countries. The AWA was founded in 1992 by representatives from Australia, Canada, Tanzania, the United Kingdom, and the United States of America. The AWA has grown to include albinism support groups in Germany, Mali, Malawi, the Netherlands, Puerto Rico, Norway, and South Africa, and other countries.The objectives for the organization are:
– To serve as a network of albinism support groups,
– To share information regarding albinism,
– To promote awareness of albinism internationally
– To promote development of albinism support groups throughout the world.
– To share information about technology that will benefit persons with albinism.”
Interesting and very well planned, I must say, especially since people suffering from albinism face a lot of discrimination and bias to the extent of it being life threatening around the world. For example, in African countries such as Burundi, Nigeria and Tanzania, “White”, is considered to be a curse from god(s)” and therefore considered abnormal. Some say that being born an albino is a curse for the mother, who has supposedly been unfaithful. Owing to this reason, many albino children are murdered upon birth. They may also be killed for magical purposes to be sold for potions in particular to traditional healers and “witch doctors” in rural areas. Thankfully, this is not done or believed in AlhamdulilAllah.
There is infact a unique Albino Village of Bhatti Tribe in Rural Sindh in Pakistan , where there is a large number of Albino inhabitants. If you want to read about them, please click here:
Typically most of the inhabitants are unaware of the implications of their conditions and the precautions that they should take to avoid the medical complications of albinism.
I worry about Sana . I worry about these people and i worry about the thousands of Albinos around the world who not only have to go through the medical problems associated with albinism but also have to fight against the inherent stereotypes and discrimination.
May Allah s.w.t save them from the blood thirsty fools who don’t realise that we are all made by Allah and hence flow from the same source and are equal in his eyes, save for who is more pious than the other, and just because someone has a medical condition or is different from the majority, does not mean that they are in any way inferior. Hmph!