According to Real Lives book by Archie W.N Roy and Robin Mackenzie Spinks; the term 'albinism' refers to a group of conditions inherited through genes which do not produce the usual amount of melanin pigment. The physical characteristics this inheritance creates involve visual impairments, little or no colour in the eyes or hair, and very fair skin - hypopigmentation.
Some if you might have see, meet or live with people with albinism but not many of us understand the terms albinism let alone the difficulties that they had experience. There's one time I saw a person with albinism across the street and ask my friends is that an albino person? One of them look and said "Oh I though you are talking about a person name Albino" and the other one said "Oh I thought you are talking about a car name Albino." Sometimes, I wonder how ignorant can one be. The fact that this kind of reaction are shown through university students show how small it is people's knowledge in albinism.
I want to bring this issue forward so I quickly search for local organization for an interview and to get a better understanding. I've come across an article in The Star - Whiter Shade of Pale and I immediately send an email to Cik Maizan Mohd Salleh; President of Kuala Lumpur and Selangor Albinism Association (KLSAA), to set up a meeting.
KLSAA is a non-governmental non-profit-making organization that is establish to provide support and guidance to persons with Albinism, their family members or guardians and those who deal with person with Albinism; to assist persons with Albinism to obtain employment; to seek assistance and cooperation from governmental and non-governmental organizations for professional assistance in relation to Albinism; to seek sponsorship and donation from relevant persons with prior approval from Registrar of Societies and other relevant authorities in furtherance of the objectives and in carrying out the functions of the Association; and others.
The logo of KLSAA depicts 3 white human-like figures representing individuals with Albinism and the black background represents the rest of supporting society. The three white human-like figures are symbolic of the three major races in Malaysia, all of which have individuals affected by Albinism. The eyes located at the heads of the figures signify the impaired vision some individuals with Albinism suffer and the awareness society should have toward all people of Albinism.
My first shot of Cik Maizan.
People with albinism always have visual difficulties and may appear to cope better than their visual activity suggest. One common myth on Albinism is that "your child is will or be blind" when actually the facts is people with albinism have low vision, usually correctable to a limited extent. This is one of the topic that I talked with Cik Maizan.
Archie W.N Roy and Robin Macknzie wrote that the visual difficulties originate in the abnormal development of the eyes, particularly the retinas, and abnormal patterns of nerve connections between the eyes and the brain. The optic system requires melanin to develop properly and critical or complete lack of melanin cause a range of visual problem.
For people with albinism, the retinas, the surfaces inside the eyes which receive light, do not develop properly before birth and during infancy. Vision is thereof lacking in detail even with corrective lenses.
The fovea, the part of the retina allowing detailed visual activities such as reading, is under-developed since apparently the developing eyes requires melanin to "organise" this important area. Also, the iris, the coloured area in the centre of the eye, lacks sufficient pigment to screen out stray light. The light which normally enters through pupil, the dark opening in the centre of the iris, can pass through the iris as well for someone with albinism. Neither do the nerve signals from retina to brain follow the usual nerve routings. This unusual routing probably reduces depth perception and hinders both eyes from working well together.
Since a minority of people with albinism do not appear to lack of normal degree of pigment, it is these visual problems which most characterise albinism. A standard test for albinism is an eye test, the result of which can allow someone with albinism to be registered as blind or partially sighted.
But it is important to note that the definition of blindness here is about significantly lowered visual acuity and distance vision, and not about the lack of useful vision.
Corrective lenses helps people with albinism with low vision. Some of the lenses that Cik Maizan showed are an ocular telescope (to read the blackboard) and magnifying lenses (to read books and notes).
Magnifying lens that Cik Maizan use during studies and sometimes to read.
Another magnifying glass that is much easier to use for looking at computer screen and books.
'Our best friends' is how Cik Maizan view her lenses.
The ocular telescope that Cik Maizan used during her studies day. This is to view the long distance object such as writing on the blackboard.
For Cik Maizan, it is easier for her to read if the fonts is large, which is why she set her mobile phone's fonts as large.
Cik Maizan without her glasses.
For Cik Maizan, low vision does not stops her from learning and studying, in fact Cik Maizan is a straight A's student and she pursued her masters degree in law at the University of Nottingham, England. Cik Maizan also showed me news clip that she collects about other students with albinism that are very good academically.
Cik Maizan Mohd Salleh at her office, Azmi & Associates; where she work as a lawyer.
Cik Maizan's work space.
Although they have to work triple the works others do, they have passion and thirst that drive them to success. Some of people with albinism however might have face difficulties in learning as the lenses are quite expensive, and it is imported. That is why Cik Maizan want organizations or individuals to donate so that KLSAA can buy lenses for students that could not afford it and to help them to pursue their studies.
The fact that the small size of print in textbooks, lighting and the general pace of teaching also should be addressed to the Ministry of Education to help people with albinism in learning institution.
Apart from vision, we also talked about how sensitive is the skin of people with albinism because melanin is lacking or absent in people with albinism, so too is their natural protection from sun damage. Therefore sunscreen is important for people with albinism, even for babies with albinism.
Beside that, we also talked about cultural views on albinism and bullying and that the bullying usually worst for country where the majority of the populations are not Caucasian. In 19th century America, people with Albinsim were considered bizarre and exhibited in circus side-shows and In Tanzania, 20 people with albinism have been killed this year alone. Witch doctors who see people with albinism as a curse use their body parts in potions they claim will bring people good luck. Even here in Malaysia, some people with albinism had been bullied usually verbally.
If bullying starts, it can escalate from verbal to physical and from infrequent to frequent until a child is regularly victimised by the perpetrators. This is when public awareness as well as schools authorities should step up and enforce the anti-bullying policies and to enlighten other students with information and understanding about people with albinism.
Few hours of meeting wit Cik Maizan definitely not enough for me to absorb all the information but it does give me a better understanding about people with albinism and drive me to contribute my skills and energy for the association. It opens my eyes and I have a huge respect and admiration for people with albinism. Cik Maizan told me that even though it is hard to explain to normal people about their visual difficulties, they can see in their own ways.
People who do not have albinism can be led towards emphatic understanding by awareness rising activity and education as Meryl Streep once said "The great gift of human beings is that we have the power of empathy." (Real Lives; Archie W.N Roy & Robin Mackenzie Spinks).This is what I hope I can achieve in future collaboration with KLSAA.
As for now, for anyone who are interested in Albinisim and maybe just to understand it, I strongly recommend Real Lives book by Archie W.N Roy & Robin Mackenzie Spinks.
My thanks goes to Cik Maizan for having me for the interview. Thank You So Much.
