Albinism causes serious damages to health, severely limiting the functioning of a person. Albinism affects eye movement, making the person live permanently with very low vision
KATHMANDU, FEBRUARY 28
Surely you have noticed them. I am talking about persons living with albinism, a rare genetic disorder that is caused by the absence of the melanin pigment in the human body.As a consequence, persons affected by it live with very white skin and white hair, and, due to their conditions, they do easily stand out among the crowd.
In order to understand more about albinism, I met with Prakhar Gupta, who is himself an albino and is leading the only NGO working for the rights of persons with albinism, National Disabled Albino Nepal. What triggered my curiosity to know more about this, almost paradoxically, invisible condition, was a recent visit to a government school where I found three brothers, all living with albinism.
Prakhar, who teaches at college and is an expert on leadership studies, was quick to provide me with some key data. According to him, the WHO estimates, one person in every 17,000 suffers from albinism, which means, almost 2,000 people have albinism in Nepal. If you think about it, it is a staggering figure because most of the citizens living with these conditions have their rights neglected and denied on a consistent basis.
In our conversation, I was provided details about how the consequences of albinism created serious damages to health, severely limiting the functioning of a person. First, albinism affects eye movement, making the person live permanently with very low vision. Second, because albinism causes the skin to become extremely white, this can easily lead to skin burn and, in many cases, to skin cancer.
One of the main problems and a key area of action for National Disabled Albino Nepal is that there is general ignorance and lack of awareness about this condition.
That's why, Prakhar shares, "the organisation has been fighting to get equal rights for albinism, and for that the organisation has already given documentary on albinism to then Prime Minister Sushil Koirala".
The organisation, continues Prakhar, "serves as a platform where albino people of Nepal can speak their thoughts openly, sharing their distresses but also their accomplishments". "We also act as information source center for all citizens with albinism, providing them with all relevant information that are needed to uphold their rights, and we offer motivation and encouragement so that they can live with dignity and pride".
It's important that key stakeholders within the disability sector, policy makers, both elected and bureaucrats, recognise the issue of albinism and take action. For example, the Act Relating to Rights of Persons with Disabilities approved in 2017, while being a huge step forward that aligns domestic legislation with the Convention on the Rights of Persons with Disabilities of which Nepal is a party, does not only not recognise albinism as a standing alone category of disabilities but it also completely ignores it.
As a consequence, it is very common for persons living with albinism to be denied the right to receive the disability card that they were entitled to by right, even though, technically, because of their low visibility, they are still eligible. To partially remedy this situation, National Disabled Albino Nepal tries its best, despite the scarce human and financial resources, to regularly organise health camps and awareness campaigns.
The organisation is in touch with over 200 albino persons, and the members are looking out for more persons living with this condition because there are so many citizens with albinism that do not receive any type of support.
Imagine the three children I met at the school. Just to give you an idea, none of them have ever carried the eye glass! You can just imagine how difficult it is for them, because of their eye's impairment, to execute any basic tasks in the classroom. The problem is that the more a person with albinism waits for eye care, the less probable of their vision limitations being at least partially addressed and mitigated.
Therefore, those reading this column have a big responsibility: if you know anyone with albinism, and you realise that this person has never received adequate care, then, you can do something about it. You can, for example, help arrange a visit to an eye hospital or to a dermatologist or simply get in touch with Prakhar's team that is ready to do its part.
"I feel very exultant by the achievements of the National Disabled Albino Nepal, despite the challenges and constraints," Prakhar further explains. He continues:"In this very short journey, the organisation has made a remarkable distinguishing mark of its own. When we got established, we had faced many difficulties, but today we cherished a successful "run", nine years from our foundation. There are more milestones to be accomplished, and it's a very long way". We know that persons with disabilities face lots of hurdles despite the country having a progressive constitution and new legislation. Among the socalled disability community, there are many citizens who have achieved dignity, respect and even fame because of their hard work and abilities. Still there are too many persons with disabilities who are ignored and neglected. Most of the albinos are in the latter group, and this is neither right nor just. The state has the obligation to do something for them, but it is also up to each of us, in one way or another, to do something as well. We could start with school programmes inviting persons with albinism, persons who despite their precarious life conditions, are not giving up and fight every single day.
They for me are the real heroes of this country, but why does Nepal need so much heroism and with it, so much, unnecessary sufferance? Would it not be enough to have people carry out their normal lives, pushing themselves and striving like anyone else, their barriers and obstacles, eliminated, once and for all?
Less heroes in pain and more rights implemented!
A version of this article appears in the print on March 1, 2023, of The Himalayan Times.
