Situation Analysis on the People with Albinism

Most of the people or communities across the world do not or hardly understand albinism. It is estimated to affect 1 in 17000 all over the world and is mainly caused by a genetic disorder resulting into lack of a pigment, known as melanin, responsible for colour of skin, hair and eyes in human body. Unfortunately, due to cultural beliefs and the lack of awareness, the condition is surrounded with myths and misconceptions which continue to persist in many parts of the world especially

So, JVS did a research study focusing on developing Situation Analysis on the people with Albinism with the primary goal to review and gather information on the current situation of the Albino people in India. The policy objective of this study is to critically analyze the pros and cons of available access and facilities for the Albinos and provide recommendations based on the findings which will have far reaching impact and consequence on actions taken by policy level authorities. This effort has been made to gain an in-depth view of the existing problems, obstacles and needs of the Albinos which will be helpful in improving their life and living.

Major findings with recommendations are given below:

->Extensive and exhaustive effort should be given by government, non-government and local and other authorities in creating awareness on Albinism through media coverage, newspaper promotion, social media circulation, setting up of awareness camps, promoting hoardings at public places or in schools among teachers, students and parents. The awareness programmes should also be frequent in numbers irrespective of urban or rural places and messages should be widespread that ‘ALBINISM IS NOT A DISEASE, IT IS NOT INFECTIOUS AND ALBINO PEOPLE ARE EQUALLY NORMAL AS NON-ALBINOS ARE’.

->There should be adequate medical facilities provided to the Albinos specially by assisting them in term of eye-care and skin care. The Albinos could be helped to a great extent by providing free medical services like eye treatment, provision of spectacles, minor surgeries and routine eye check -up at government hospitals, PHC or by other local authorities. Similarly the Albinos should be provided with skin treatments, sunscreen lotions, medicines for skin allergies etc. at free or nominal charges at govt hospitals or medical centers. This will help the Albinos to a great extent and provide support in their daily life.

->As citizens of our country the Albinos should also enjoy right to employment as other Non-Albinos do. Thus there should be some jobs/service or work provided to the literate or educated Albino mass which requires working from inside any covered place, office or any establishment. This will help them both to protect their eye and skin and continue their job responsibilities in much hassle-free way.

->Medical awareness on Albinism must be created and spread across both Albino and Non-Albino group. The message should be well spread that the skin tone of Albinism is not curable by visiting quacks or by doing any spiritual or superstitious practices which can be both mentally and physically harmful for the Albinos. Albinism is not a disease that can be cured and only the symptoms or health conditions can be controlled by proper medical treatment.

->There should be intervention from Govt, non-government and other organizations that can help enforcing the rights of the Albinos as other citizens avail. There is urgent requirement of establishing special schools for the Albino children where specially designed study materials and educational equipment will be provided to support their education in a smoother way.

->To promote the participation of the Albinos in all social events, there is need for organizing special counselling camps where the Albinos will be guided and taught to be more vocal about undesirable incidents that hampers their daily routine, to be more initiative and motivated in participating anywhere with the Non-Albinos and also not to feel shameful, uneasy and guilty for being an Albino. These camps would be targeted to improve the mental strength of the Albinos and to lead a normal life like other individuals.