Beauty is often synonymous with being fair and having an unblemished skin. An increasing number of fairness creams in the market and their overture of solving problems in people’s lives have often shrouded the “dark is beautiful” bandwagon in India. Look into any matrimonial section in a newspaper; the number of times you encounter the word “fair” is perhaps far more than the times you will encounter the word “educated”. We often fail to realize that our notions of beauty somehow find their way to the subsequent generation, unless there’s a conscious effort to instill that beauty is in more than just the skin or the shape of your body.
My daughter (Kuhu) has vitiligo and it was detected when she was 3 years old. Its initiation with just pink patches under her eye gradually became white, and within a period of nine months other patches appeared in certain places on her body. A visit to a pediatric dermatologist confirmed this auto-immune condition, characterized by the patchy loss of skin colour. To think of it, vitiligo is perhaps the most benign of all the auto-immune disorders that have been known to occur. Many of them such as multiple sclerosis, lupus etc can be life threatening. But perhaps what is more threatening is the stigma associated with vitiligo that is repeatedly reinforced by insensitive remarks!
While boarding a flight home, I was at the airport security check with my daughter and the lady who was scanning us looked at my daughter and remarked (mind you in front of her) “You seem to have a normal skin then why does your daughter have patches like these?” I replied in the curtest demeanor “Was this statement necessary in front of her?” Over the last three years, hearing similar comments in public places have seasoned me to an extent so I did not waste a single minute in giving it back to her. But I must confess that this was not the situation three years ago. I am a single parent and a painful separation five years ago left me with several wounds which are still healing. My daughter’s condition made me guilt-ridden and broken. The only thoughts that would come back was “why her” and “how will this impact her”? While I wallowed with these thoughts, I had to simultaneously buffer her from my thoughts so that she has no insecurities. My psychological space was getting cluttered with my guilt and the incessant thoughts of how her future may be, while at the same time trying to safeguard my daughter’s mental space. However a train journey from Kolkata to Bangalore became a life-changing moment and helped me declutter.
I was on the Duronto Express and my co-passengers in the first class compartment were a family of three. The daughter perhaps about 19 years old was brought in a stretcher and the parents looked hassled while trying to settle her in. My daughter kept observing but was quiet, perhaps trying to assimilate the situation. The girl looked at Kuhu and gave her a wide smile. Kuhu smiled back and I realized that an instant connection was made. As the train chugged along, we all got comfortable and started conversing. I got to know that the 19 year old was paralyzed waist down caused by a cancer in her spinal area. This was detected a month before her 10th board exams and the last four years have been a harrowing experience of moving in and out of hospitals from all corners in India. This time they were on their way to CMC Vellore. Being a paraplegic, she was dependent on her parents for everything but what really amazed me was her indomitable spirit! She and Kuhu spent the whole journey chatting up and watching stuff on a tablet. As we parted ways in Renigunta, the sudden realization that their pain was far more than mine stirred me. I promised to myself that not only am I going to be a shield for the insensitive remarks but will also help her fight it out.
We have had our share of such remarks in bus stops, metro stations, airports and passport offices! A walk would garner up curious faces and scrutinizing stares. Many a times, people have refused to sit next to her thinking that it is contagious. I have had random people come and tell me on the road as to what I should be doing to cure it. It is perhaps them who need to cure themselves as none of them, even for a fraction of a second thought how their words would impact her. While Ayurvedic medicines helped reduce some of the patches, the innumerable food restrictions made it difficult. In a birthday party where other kids would be gulping down their favourite savouries, Kuhu had to figure out what she could eat! After a year of treatment, I decided to take a break and just maintain her immunity levels with a healthy diet. But more than what she should eat, it was more important to sensitize her to the fact that “you are more than just what you look”. An internet search opened up a range of articles on vitiligo and personal stories of many individuals. Several names, known and unknown started popping up; Winnie Harlow (Chantelle Brown-Young), a model who embraced vitiligo, Rina Mitra, a senior IPS officer, Ninu Galot, an entrepreneur and fitness expert, Raka Chaki, a writer and Niyati Shah, working in the corporate sector to name a few. Each of them had their own stories to share that helped me fortify my spirit.
However amid innumerable insensitive remarks from strangers, is a barricade of support from my friends and colleagues, my immediate family, Kuhu’s peer group and teachers in school. Perhaps this has helped strengthen her to a large extent along with my constant conversations. Her friends love and adore her for who she is, oblivious of the patches on her skin. The last couple of months, she has been pestering me to buy her shorts for the summer. I was a bit apprehensive and will not deny that this prospect got me a tad conscious and kept putting it off for later. Finally she said “If you are thinking that by wearing shorts, people would be staring at the patches on my legs, then let me tell you that I do not care. Now can you buy them for me please?” “Yes” I said with tears at the corner of my eyes. I realized that for now, a part of the battle is won.
Vitiligo is still a huge stigma in India and the quantum of harrowing experiences is far more than the positive ones that people may face. Social acceptance is a continuous struggle particularly when trying to uproot our notions of “beauty”. Every year the 25th of June is celebrated as the World Vitiligo Day, an initiative aimed to increase global awareness. In fact the conference in Houston this year is supposed to highlight the mental health impact of vitiligo.
I do not know how things will pan out for her in the future, since technically there is no cure for vitiligo. Medicines can keep it under control but the patches can come and go. But as a mother I know that my job does not end here! In my everyday life, I make a conscious effort to sensitize her about the diversity of peers that she may encounter in her life, each having their own set of battles to fight. She has a lot to learn from them- their coping mechanisms, their pain but more importantly their strength. Only when we are empathetic enough, will our kids learn to be one.
My daughter (Kuhu) has vitiligo and it was detected when she was 3 years old. Its initiation with just pink patches under her eye gradually became white, and within a period of nine months other patches appeared in certain places on her body. A visit to a pediatric dermatologist confirmed this auto-immune condition, characterized by the patchy loss of skin colour. To think of it, vitiligo is perhaps the most benign of all the auto-immune disorders that have been known to occur. Many of them such as multiple sclerosis, lupus etc can be life threatening. But perhaps what is more threatening is the stigma associated with vitiligo that is repeatedly reinforced by insensitive remarks!
While boarding a flight home, I was at the airport security check with my daughter and the lady who was scanning us looked at my daughter and remarked (mind you in front of her) “You seem to have a normal skin then why does your daughter have patches like these?” I replied in the curtest demeanor “Was this statement necessary in front of her?” Over the last three years, hearing similar comments in public places have seasoned me to an extent so I did not waste a single minute in giving it back to her. But I must confess that this was not the situation three years ago. I am a single parent and a painful separation five years ago left me with several wounds which are still healing. My daughter’s condition made me guilt-ridden and broken. The only thoughts that would come back was “why her” and “how will this impact her”? While I wallowed with these thoughts, I had to simultaneously buffer her from my thoughts so that she has no insecurities. My psychological space was getting cluttered with my guilt and the incessant thoughts of how her future may be, while at the same time trying to safeguard my daughter’s mental space. However a train journey from Kolkata to Bangalore became a life-changing moment and helped me declutter.
I was on the Duronto Express and my co-passengers in the first class compartment were a family of three. The daughter perhaps about 19 years old was brought in a stretcher and the parents looked hassled while trying to settle her in. My daughter kept observing but was quiet, perhaps trying to assimilate the situation. The girl looked at Kuhu and gave her a wide smile. Kuhu smiled back and I realized that an instant connection was made. As the train chugged along, we all got comfortable and started conversing. I got to know that the 19 year old was paralyzed waist down caused by a cancer in her spinal area. This was detected a month before her 10th board exams and the last four years have been a harrowing experience of moving in and out of hospitals from all corners in India. This time they were on their way to CMC Vellore. Being a paraplegic, she was dependent on her parents for everything but what really amazed me was her indomitable spirit! She and Kuhu spent the whole journey chatting up and watching stuff on a tablet. As we parted ways in Renigunta, the sudden realization that their pain was far more than mine stirred me. I promised to myself that not only am I going to be a shield for the insensitive remarks but will also help her fight it out.
We have had our share of such remarks in bus stops, metro stations, airports and passport offices! A walk would garner up curious faces and scrutinizing stares. Many a times, people have refused to sit next to her thinking that it is contagious. I have had random people come and tell me on the road as to what I should be doing to cure it. It is perhaps them who need to cure themselves as none of them, even for a fraction of a second thought how their words would impact her. While Ayurvedic medicines helped reduce some of the patches, the innumerable food restrictions made it difficult. In a birthday party where other kids would be gulping down their favourite savouries, Kuhu had to figure out what she could eat! After a year of treatment, I decided to take a break and just maintain her immunity levels with a healthy diet. But more than what she should eat, it was more important to sensitize her to the fact that “you are more than just what you look”. An internet search opened up a range of articles on vitiligo and personal stories of many individuals. Several names, known and unknown started popping up; Winnie Harlow (Chantelle Brown-Young), a model who embraced vitiligo, Rina Mitra, a senior IPS officer, Ninu Galot, an entrepreneur and fitness expert, Raka Chaki, a writer and Niyati Shah, working in the corporate sector to name a few. Each of them had their own stories to share that helped me fortify my spirit.
However amid innumerable insensitive remarks from strangers, is a barricade of support from my friends and colleagues, my immediate family, Kuhu’s peer group and teachers in school. Perhaps this has helped strengthen her to a large extent along with my constant conversations. Her friends love and adore her for who she is, oblivious of the patches on her skin. The last couple of months, she has been pestering me to buy her shorts for the summer. I was a bit apprehensive and will not deny that this prospect got me a tad conscious and kept putting it off for later. Finally she said “If you are thinking that by wearing shorts, people would be staring at the patches on my legs, then let me tell you that I do not care. Now can you buy them for me please?” “Yes” I said with tears at the corner of my eyes. I realized that for now, a part of the battle is won.
Vitiligo is still a huge stigma in India and the quantum of harrowing experiences is far more than the positive ones that people may face. Social acceptance is a continuous struggle particularly when trying to uproot our notions of “beauty”. Every year the 25th of June is celebrated as the World Vitiligo Day, an initiative aimed to increase global awareness. In fact the conference in Houston this year is supposed to highlight the mental health impact of vitiligo.
I do not know how things will pan out for her in the future, since technically there is no cure for vitiligo. Medicines can keep it under control but the patches can come and go. But as a mother I know that my job does not end here! In my everyday life, I make a conscious effort to sensitize her about the diversity of peers that she may encounter in her life, each having their own set of battles to fight. She has a lot to learn from them- their coping mechanisms, their pain but more importantly their strength. Only when we are empathetic enough, will our kids learn to be one.
