People with Alopecia fall on a very diverse spectrum. The types and severity of Alopecia varies with individuals, and so do their experiences with the condition. This is not a definitive piece on the condition itself. This is my unique, embodied experience as a South Asian woman with a very visible form of Alopecia.
I am a bald South Asian woman. Yes, we exist, but I do not blame you for not knowing that. We are unseen and rendered invisible. They don’t write Bollywood love songs about women with short hair; let alone no hair. There are no paeans dedicated to our zulfein (or the lack thereof). A heroine with cropped hair cannot sensuously drape her lover’s face with her cascading mane (yes, I’m thinking of that iconic moment from the song Kabhi Kabhi). The ideal of “kaali, lambi, ghani zulfein” (dark, long, lustrous stresses) is so ubiquitous as the baseline of attractiveness for women in our cinema, television and advertising that unless you are deviation from it, it passes unnoticed.
I have Alopecia, a condition that presents as hairloss in men and women. Alopecia represents a wide spectrum of symptoms and causes, but hair loss is the most prominent – and often the most mentally devastating – symptom. Many people with Alopecia experience a gradual onset of symptoms, some losing portions of their hair in their teens, while others in their 30s-40s. Some eventually lose all their hair. Medication can control and manage the condition to an extent, but there is no cure. I have a rare and extreme form of Alopecia Universalis, with total loss of all body hair including the eyebrows and eyelashes. My father has the condition too, and I inherited it from him. Unlike many people with Alopecia, I have no lived experience of losing my hair because I have always been bald. Baldness has always been my ‘normal’.
Being a visibly bald Indian woman marks you out as ‘abnormal’ very quickly. As young as three, I got ample clues from the everyday visual culture in India, that I was always going to be an aberration of the Indian feminine ideal. Nandini Ramnath has made similar observations about Hindi cinema, where short hair for women is a visual shorthand to signify either rebellion (such as Kangana Ranaut’s cropped hair in Tanu Weds Manu) or a woman deliberately divorcing herself from her femininity to navigate traditionally male spaces (such as the bob sported by Priety Zinta in the film Lakshya as a war reporter). The image that is seared into my memory is seeing Padmini Kolhapure’s character in the film Prem Rog being forced to tonsure her beautiful long hair when she becomes a young widow. I was too young to comprehend the film when I watched it as a child, but I knew enough to recognise that a bald woman was bad news – a symbol of death, mourning, and trauma.
You know you’re an outsider when the only likeness you can find of yourself in popular culture is in an 80s Hollywood space opera. I don’t remember when and where I came across a picture of Indian model and actor as Lt. Llia from the 1979 film Star Trek: The Motion Picture, but I do remember being awestruck. Khambatta, a former Miss India, famously shaved her head to play the bald character and this was the first time I saw the image of another Indian woman who looked like me. Khambatta herself came up with the idea for her costume for the film. It was not the standard-issue grey Star Trek crew uniform, but a striking short white robe with a dramatic collar framing her bald face. As she recalled in an interview, “being bald and wearing that grey starship uniform, I would have looked like a boy. I wanted to look like a sexy female.” Even Khambatta, a certified icon and space goddess, felt that she would have looked unattractive and ‘unfeminine’ without her hair. What hope was there for me?
I learned very early on that hair in India is deeply gendered. As a young child, I realised I was different not from looking at my reflection in the mirror, but from the worry reflected in my parents’ faces, the ‘concern’ and outright horror reflected in the faces of strangers, and from the pity directed at my parents by others over the fate of their bald daughter. My first memory of realising that something was, at least in the eyes of society, ‘off’ about me was when I was 3 or 4 years old. I was walking with my dad one December morning, when a total stranger stopped him and asked him what was wrong with me and whether I was ill. I was too young to get upset but I was old enough to sense that dad was. If male baldness is considered unattractive and undesirable, female baldness is downright catastrophic. It is unthinkable. As many cultures around the world, the idea of female attractiveness and traditional femininity in South Asian societies is inextricably tangled with long hair.
The dominant memories of my childhood and young adulthood in India was of experiencing bullying, misplaced sympathy and condescension. Strangers on the street calling me “takli” or “ganji” (pejorative Hindi words which mean ‘baldie’) was a common occurrence. Most people find it unbelievable when I tell them that the most cruel remarks and bullying throughout my growing years always came from adults. In all my 26 years of having lived in Mumbai, I can’t think of a single day when I have been outdoors and haven’t been pointed/ laughed at or called ‘takli’. Not by kids but by adults. Adults who should have known better.
To shield me from bullying, my parents bought me hats to wear outdoors. This was in the 90s and the options were thin, flimsy, embarrassingly awkward hats in garish colours like yellow and hot pink. I suspect not a lot of pictures exist of me from back then. Thinking about those hats still makes my toes curl up in embarrassment. Going outdoors to enjoy the first rain or on a particularly breezy evening was out of question. The hat would get soggy and droop over my face or get blown off. One of my worst memories is a couple of grown men in their early 20s walking past me on the street and yanking it off my head. I was 13 or 14 and ashamed, picking up my dirty hat from the street to hurriedly cover my baldness. The men walked away guffawing with laughter and most people on the street just gawked.
And then there were the “Ladka hai ki ladki?” (Is that a boy or a girl?) questions my mum would get when we travelled together in the ladies compartment of the local trains. When my mum would explain that it was a genetic condition, I’d sit there listening to responses like “Oh no! Poor thing. If she were a boy, it’d have been fine. “Ladke ko sab chalta hai. Ladki ko aisa kuch nahin chalta” (“It’s fine for boys, not for girls”). Another common response was “Wig kyon nahi dalte aap?” (“Why don’t you get her a wig?). To be honest, I never had the slightest urge to wear a wig simply because the ones available then never looked remotely realistic to me. Besides, by then, I had figured out how to navigate society with my baldness and my awkward, floppy hat. It was familiar to me. Painful and awkward, but familiar.
By age 14 or so, I was dressing myself in oversized, unflattering clothing trying to make myself invisible. Trendy, fashionable clothes felt like something that looked good on other girls. Proper girls who had hair. By now, I knew that I wasn’t just a bald person in India. I was a bald woman in India. The teenage boys in school never had to seek permission from their parents for haircuts. The girls, it seemed, always had to. ‘Boy cuts’ for girls were a massive deal that often involved coaxing of both parents and ‘permissions’. Some girls would kindly try to involve me in these conversations by saying things like “You’re so lucky! You don’t have to worry about head lice”. It was very sweet of them but it never made me feel better. As I got older, I felt less and less like I was one of the girls.
While my peers were discovering fashion and boys, I knew I was always going to be seen as a ‘deficient’ girl. A girl who wasn’t a proper woman. The idea of people finding me romantically attractive was laughable at a time when every new introduction began with the question “Do you mind if I ask you one question?”. The question would always be “What’s up with your hair?” (Spoiler alert: My Alopecia has not stopped me from being a happy, long-term relationship)
And then there were the cures. People in buses, trains, parents of kids at school, neighbours, distant relatives making long-distance calls (this was the 90s. Now, these cures would probably be sent in the form of Whatsapp forwards). Everyone knew someone who knew someone whose “ladki” suffered from the same “problem” and had been miraculously cured by a herb or the milk of some mythical unicorn.
My parents tried everything. My mum would drag me to hair loss clinics advertised on television, my grandparents travelled with me to various parts of India because ‘someone’ who knew ‘someone’ told them about a homeopathic doctor who could cure my baldness. My dad would rub garlic on my scalp every Sunday (again, at ‘someone’s suggestion). None of the cures worked, of course. The garlic made my scalp break out and the smell was nauseating. To this day, I cannot eat garlic because of the memory.
Every futile attempt just made me more depressed. It was more to do with my parents’ dejection. I aced at studies, won prizes at school and read everything I could but always felt like I was a massive disappointment to them. Their daughter was bright, but not normal like other people’s daughters.
I felt worse for my parents, who clearly felt helpless dealing with the world’s misplaced sense of ‘sympathy’ for their poor daughter, and they tried to shield her from the relentless bullying. Sometimes, the bullying was from within the family. When I got my first period, an aunt congratulated my mum and said “You must be so relieved. At least there’s nothing important wrong with Shruti”.
Ironically, one last shot at a ‘cure’ saved me; not from my Alopecia but from my shame of having it. The last doctor we consulted (whom I didn’t mind visiting, he was quite good looking!) when I was 16 suggested trying out hormone based medication. I tried it and couldn’t stop throwing up for an entire day. When the ordeal ended, I knew I was done trying. I was bald and going to stay bald. No amount of bullying and peer pressure was worth the disappointment and humiliation. If it was going to my bald head against the world for the rest of my life, so f*cking be it.
The next milestone was when I was pursuing my MBA in Mumbai. I woke up one day and decided I was going to head out without the hat. I walked into the classroom as a bald woman. Someone at the back sniggered. Most of them looked stunned, but there were also many smiles. Different people deal with Alopecia in different ways. There is no right or wrong way to deal with it. This was mine. Not wearing a wig is a personal choice and it’s in no way a reflection on people with Alopecia who do wear wigs.
I have been living life as a visibly bald brown woman for about 12 years now. The questions didn’t magically stop when I took off my hat. I met new people, the interactions often started with “Can I ask you a question? What happened to your hair?” I don’t particularly mind any more and I am happy to talk about my condition. However, it would be nice if people didn’t feel the necessity to ‘solve the mystery’ of my baldness before getting to know me. That being said, over the course of time I have encountered many who never did ask the question. Now that I think about it, most of my closest friends have been people who never did ask the question. They figured that if it was important enough, I would tell them myself in due time.
Alopecia also resulted in some hilarious moments. My first job was as a copywriter in Mumbai, and an incredibly free spirited female colleague shaved her head bald for the heck of it. The two of us would take lunch time strolls through the market at Mohammed Ali Road, our scalps glistening in the sun and laughing, as jaws dropped.
When I tell people about my experiences with bullying, most assume that it came from people who are “not well educated” or come from a ‘lower social class” In my experience, most of the bullying I have came from middle class people with ‘good intentions’ and ‘concerns’. For instance, on the first day of my MBA in Mumbai, one new classmate expressed sympathy towards my parents: “it must be so hard for them. They must be so worried that they can’t get their daughter married off”. Or “have you considered wearing a wig for interviews? Employers might feel more comfortable…”
The last time in recent memory that the bullying really got to me was a few years ago, just before I was due to leave Mumbai for the UK for my second Masters degree. I was travelling in the ladies compartment and an off-duty woman constable tapped me on the shoulder, giggled with her friend and said in Marathi, “ladies compartment aahe he. Tu mulgeech aahe na?” (“This is the ladies compartment. Are you sure you are a woman?”). The compartment was full of women and it was utterly humiliating. Telling her to f*ck off and getting off at the next station, tears streaming down to my face was all I could manage. To this day, I wish I had reported her. Even as an adult woman now more or less comfortable with her Alopecia, I am still taken aback by the cruelty of that incident.
When I moved to Scotland in 2016 for my Doctorate degree at St Andrews, I got myself an electric razor. I started to shave the sparse tufts of hair on my scalp down down to a neat, fine buzz cut. It’s incredible how little things like having some control over how my hair (or the lack thereof) looked felt so empowering. It has always felt strange to me to refer to Alopecia as a ‘condition’. It doesn’t affect me physically in any other way. The only other physical symptom is that my fingernails and toenails are slightly thicker than average. For all practical purposes, in my case, it has been little more than a genetic condition that has resulted in a very sparse body/ scalp hair phenotype and incredible savings on shampoo. However, the very nature of hair loss being seen as ‘superficial’ can obscure the devastating invisible impact it can have on people with Alopecia.
My love/hate relationship with South Asian film and media continues. As I write this, I am a few hours from graduating with a PhD in Film Studies. My doctoral thesis looked at the development of female film audiences in India from the 1920s-40s, understanding how cinema going went from being an activity that was considered taboo for women, to women being one of the most profitable audience demographics for the Bombay film industry. Having access to and ownership over popular culture, especially by way of seeing oneself represented (or not) in the media, reveals much about a society’s ideals of attractiveness and desirability, and who gets left out and rendered invisible if they do not conform to those ideals.
The now much-memed Netflix show, Indian Matchmaking, has sparked conversations about how the oppressive structures of casteism, colourism, and misogyny continue to manifest as widely-accepted criteria of physical attractiveness (‘Slim, trim and fair’ as Sima aunty would put it). Being a savarna, cis, heterosexual woman who lives outside of India gives me an enormous amount of privilege which has shielded me from some of the worst forms of marginalisation.
However, as a bald Indian woman, I did have a unique vantage point of feeling like an outsider in my own culture; never seeing myself represented in films, television, advertising and wider media. In May 2019, on a trip to India, I had the bizarre out-of-body experience of finally seeing myself rendered visible on the big screen. Several of my Indian friends Whatsapped me the trailer for the film Gone Kesh, starring Shweta Tripathi as Enakshi, a young Indian woman who starts losing her hair to Alopecia. The film’s name is a play on the phrase “gone case” (someone beyond help), as ‘kesh’ is the Hindi word for hair. Not a major Bollywood blockbuster, I found the one cinema in Hyderabad that was screening the film and watched it in a nearly empty hall.
As Gone Kesh poignantly illustrates, Alopecia can affect families, not just the people with condition. As with Enakshi, family members and strangers were particularly concerned about the impact of baldness on my future marriage prospects. In a marriage market notorious for its regressive beauty standards where even deeper skin tones remain a disadvantage, can you imagine a bald Indian woman on a matrimonial website? (Even Sima aunty wouldn’t be able to help). In the film, Enakshi and her parents struggle to convey the realities of her condition to a prospective groom’s family. Enakshi eventually removes her wig, revealing her baldness to them. The groom and his family sit there in stunned silence before making a hasty retreat.
Personally, I would have really liked the film to have showcased how Alopecia also impacts the simplest of everyday interactions. On the same trip to India, I went to the bank to get my address changed. The bank manager asked me in front of several other customers, “What happened to your hair?”. I must have missed the section of the form where I had to mention how long my hair was in order to get banking transactions done.
Several poignant moments in ‘Gone Kesh’ are handled with a delicate power, resisting the temptation to be maudlin. In a brief exchange, Enakshi tells her parents she no longer wants to take medication because she has made her peace with her diagnosis. It took me and my parents nearly 20 years to get to this acceptance. In the film, Enakshi wears a wig in public to keep the stares, comments and questions at bay. I spent all of my childhood and teen years wearing a hat in public. At 21, I finally walked into my MBA classroom without the hat and without any explanations. As the end credits of Gone Kesh rolled and I sat there in the dark hall with tears streaming down my face, I realised that I wasn’t just the catharsis of reliving my life experience through Enakshi’s journey. I was also experiencing the powerful sensation of seeing myself represented. I cried realising that somewhere, some little Indian bald girl would not have to wait decades to see herself affirmed and celebrated.
Speaking to other people with Alopecia has made me realise how this lack of media representation compounds the feelings of otherness and isolation. There are currently no studies on how these media experiences result in an adverse psychosocial impact on people with Alopecia. I am now embarking on a research project which has recently received funding from Alopecia UK, where I will be interviewing other women with Alopecia to highlight their lived experiences, to understand the impact of this invisibility, and to learn how we can advocate for body diversity in the media.
Interestingly enough, having had some distance from the worst of the bullying in my early 20s, I am now exploring how I can highlight my unique features using makeup and wigs. I no longer want to hide. I am currently trying to learn how to draw eyebrows from scratch using makeup, with the help of some incredible Youtube tutorials (such as this one) made by other people with Alopecia. I want to try wigs; not because I want to hide my Alopecia, but because (like everyone else) I also get bored of my ‘hairstyle’! I think I want to get one that looks like Jean Seberg’s haircut in Breathless. I’ll let y’all know how that goes.
For now though, I’m happy to look like Lt. Llia from Star Trek.
Dr Shruti Narayanswamy is a film historian and media researcher based at the University of St. Andrews. Her research looks at women’s experiences of Bombay cinema in the 1930s-40s, with a focus on women-centric film publicity and exhibition, and women’s labour on the margins of the film industry. She is now starting a research project on the media experiences of women with Alopecia. She is @mahalmovies on Twitter and blogs at www.mahalmovies.com.