Disability — we hear it, we see it and sometimes we talk about it. Within the South Asian diaspora, there is still a lack of acceptance of the realities of being disabled or having a disability. I currently work as an occupational therapist (OT) in early intervention (EI). This means that my clients are kids ages 0-3, who may have developmental disabilities, intellectual disabilities, developmental delays for one reason or the other; or just challenges doing the things that kids in that age range do every day. My therapy sessions often consist of treatment sessions with the kids and parents I work with in addressing how the child eats, plays, sleeps or self-regulates.
As a clinician who has worked with individuals with disabilities in the last few months and has studied this over the last 6 years, I can discuss disability and mental health at length. Recently, I realized how irregular these dialogues are in the South Asian communities. Because March is National Disability Awareness Month in the U.S, I thought I would shed some light on what disability is and what it means to be disabled.
Disabilities have existed as long as humans have been alive. There’s actually a whole academic and scholarly area of knowledge known as disability studies, which I minored in during my undergraduate career at UIC. In Disability studies, you learn that perceptions of disability have shifted throughout time and centuries for the reason it has been looked down upon. It’s interesting that so many of these reasons continue to be the rationale for negative perceptions of disability today, especially in many South Asian communities. Some reasons disability is looked down upon or is not accepted is because disabilities may not allow for the disabled individual to achieve the same cultural and societal milestones as able-bodied individuals, caregiving for a disabled individual can strain families financially and the negative attitudes towards disability can create barriers and challenges for the disabled person.
As common as it is for disabled individuals or disability communities to be perceived as negative or pitied, it’s as common as individuals becoming disabled. At one point or another, 1 out of 3 individuals will gain a disability or become disabled suddenly. With how common the experience of disability is for many, that is why I continue to be an advocate for disability and mental health. The likelihood of becoming disabled suddenly due to trauma or injury, or gaining a disability over time due to a chronic condition or health complication continues to increase every year. What is necessary to emphasize also in South Asian communities when thinking about disability is that it does not necessarily mean weakness or reduced quality of life. Professionals like OTs or other rehabilitation professionals can help individuals with disabilities attain lives that are meaningful and independent however they define that.
Disability is also only one part of an individual’s identity, which is why the use of person-first language is so important unless the disabled individual you are referring to prefers disability-first language. Person-first language can look like, “A person with diabetes or autism,” while disability-first language can be, “A diabetic or autistic person.”
January 16, 2023January 16, 2023 6min readBy Sejal Sehmi
I was a mere 14-year old on the fateful night of 22 April 1993. The night that witnessed black teenager Stephen Lawrence brutally murdered in a racially motivated attack as he waited for a bus. The night that cemented my fear, that the colour of my skin does matter. The same night that confirmed my indifference as a British Asian in the United Kingdom — were we really united? Fast forward to May 25 2020, the murder of African-American George Floyd by a white policeman was the turning point for British Asian author and my lovely friend, Shweta Aggarwal to finally break her silence and narrate her story of colourism, in her new book, “The Black Rose.”
Aggarwal’s gripping memoir emits so many emotions; that of an awakening, a voice that has been suppressed for years, filled with anger, mistrust and guilt. But most importantly, “The Black Rose” successfully disrupts the narrative that consistently allows society to box someone as indifferent based on a visibility factor. For Shweta, this factor was the colour of her skin. The injustices she consistently endured via some family members and fellow South Asian peers throughout her life, was as a result of her skin tone failing to qualify as ‘acceptable’, or as she often quotes in her book, not ranking high enough on the ‘fairometer.’ Whether she was in India, Japan or London, the scale was never too far behind.
Within the first chapter, she recalls as a child in India, the distinct lack of subtlety displayed by certain family members through direct taunts of her duskier appearance in comparison to her parents. She realised that she wasn’t in complete isolation from this prejudice, as her maternal aunt and uncle were also harshly nicknamed on the basis of their skin colour — Kaali (black) and Savla (wheatish). Aggarwal was left mortified by what many South Asians sadly still continue to casually exercise. Echoing similar incidents within my social proximity, it’s infuriating witnessing the recipients of such remarks surrender to laughing at themselves too.
Except it isn’t funny. Born into a culture where conversations on religion, caste and hierarchy in India are still so prominent, the comparison of Aggarwal’s skin colour being as dark as that of the domestic help (often from poorer families), prematurely planted seeds in her mind that she simply didn’t belong with her family, especially when she was sent to boarding school. Her lack of self-worth coupled with these taunts, gave her a whole new vocabulary for the letter B, that grew in parallel with the ongoing prejudice and anxiety. B for blackie, beggar’s child, bedwetter! Not funny, but derogatory. Post her book launch that Brown Girl Magazine attended, she tells me,
I personally feel we are way behind when it comes to understanding the importance of mental health. Name-calling was normalised and if you objected, you were ridiculed further with remarks such as ‘So sensitive! Can’t you take a joke?’ Body and colour shaming can lead to a feeling of inadequacy in the victim, which can further lead to depression and much worse mental illnesses.
During the 1984 Hindu Sikh riots in India, where over 3000 Sikhs lost their lives, Aggarwal recollects the frightening moment when she and her classmates fled into hiding to escape the violence during a school trip. As a means to save all the students from harm, the Sikh boys were forced to remove their turbans and long hair — their visible identities stripped to keep them alive. Yet, ironically, even in this horrifying situation, Aggarwal felt least at risk, attributing this self-assurance to her darker appearance.
The crux of her self-loathe was the love-hate relationship she formed with skin whitening creams. The birth of Fair and Lovely, India’s most renown brand (now known as Glow and Lovely following a backlash) was notorious for selling the damaging message that fairer skin equated to a happier and fulfilling life. For it was fairer skin women that would qualify for marriage — clearly their only sole purpose!
Tactfully using famous fair-skinned Bollywood actresses in television ads and posters, their so-called perfection would scream out to vulnerable young girls. (Men were targeted much later on, but the importance seemed less). Akin to the wretched beach body posters plastered on every corner in January — because apparently bikinis only look good on a certain body type — the damaging message remains the same. Social acceptance comes at a cost, and that cost is to look a certain way.
It’s an extension of the dated methods imposed on women from the womb, where mothers are lectured on drinking milk with saffron to ensure the baby is fair, traditional matrimonial sites asking women to specify skin colour, and women being told to stay out of the sun. These socially ingrained views are eventually developed into modern day methods in the form of cleverly marketed consumables. Aggarwal admits,
Most people only use the cream on their face just as I did. At that time, I didn’t even think about the rest of the body. I felt that if the face becomes fairer, that will be enough for acceptance. My mum noticed the difference for sure and I was lighter by the time I met my husband, Amit. I must admit the addiction is a combination of three factors: the justification in your own head, the strong marketing message that ONLY fair is beautiful, and the ‘compliments’ from those around you.
I admired Shweta’s honesty on admitting what essentially was a dangerous obsession that she remained faithful to throughout her teenage and adult life. A ritual that, whilst prompted gradual results in her appearance, was never going to eliminate the insecurities she felt within herself. Moments of joy with her husband and children on holidays abroad, would be broken up by the need to ‘fix’ any damage the sun may have inflicted i.e. reverse her tan. The booming tanning industry in U.K., her now home, and admiration of her ‘sun-kissed’ look by Brits initially surprised Aggarwal — as if her colour had now gained acceptance.
But who are we seeking acceptance from? A society that is still deep rooted in patriarchy forcing women even now to adhere to dated rites of passage that holds no relevance? Or a society that seeks to point out one’s indifference because of how they look — their skin, their religious attire, their weight? Or a society that passes judgement on a woman’s self-worth, and continues to abuse that same woman behind closed doors under the eyes of Goddess Kali? Aggarwarl goes on to explain,
The more damaging perceptions of colourism, are that ‘fair is rich’, ‘fair is successful’ and ‘fair is better educated’. Essentially, ‘fair is supreme’ in every sense. And if that’s the case, where does that leave dark-skinned people? In Ukraine, for example black and brown people were discriminated against and not given a fair chance to save their lives. Is it fair to be denied a basic human right — survival — based on your colour?
I personally was curious to know from my family what the definition of prejudice in the Hindi vocabulary is and how it is/was applied to in India. “Pakshappat” (taking sides) or “poorva dhaarna”, were the closest pure Hindi definitions known to my cousin, yet rarely used. However, my dad stated that “hum bedh bhau nahin hai” was the common term used to state amongst family and friends when someone was not biased and believed in equality. Somehow, colourism never really came under that category. A sentiment echoed by some of my Chinese and black friends . Even in parts of China and Africa, the belief that darker skin is perceived as inferior, is accredited to stereotyping certain groups of people as manual labourers working under the sun, and therefore of a lower class or caste. Does Shweta believe we can change this attitude?
A couple of my aunts are still reluctant to help me with my mission. One even said ‘it’s pointless fighting it’, while one said, ‘everyone has the right to define beauty for themselves and being fairer is what beauty is for some.’ The problem with this is that people then start to look down on people who aren’t. Colourism, casteism and classism divide people, creating more unrest in society. If we continue to aspire to be fairer, we’re still encouraging white skin privilege, and encouraging colonial values. The more we allow ourselves to succumb to these social constructs, the more enslaved we feel internally. Melanin is crucial for protecting our skin against the harmful radiation of the sun. Feel blessed that you have it and wear it with pride!
I wonder how we can dare to walk shoulder to shoulder with our black friends in the Black Lives Matter movement, if we refuse to face up to our own biases against colour? We seek equality in the U.K., but deny our deep-rooted prejudice, whilst a white privileged man lectures the world on the difference between racism and unconscious bias (yes Prince Harry, I’m looking at you!). “The Black Rose” has paved a way for many more voices to speak out against the damaging impact of colourism, and in my view, rightly belongs under the definition of prejudice in the collective South Asian vocabulary.
“The Black Rose” is available to purchase on Amazon.
I first started writing it for submission to a competition with the Borough Press. I wasn’t sure what story I wanted to write because I felt obligated to write certain stories or write in a certain style. I pretty much got fed up and started questioning myself. When I put pen to paper and got serious, the story that came out was a story of grief not necessarily specific to my life. I knew I wanted it to be about a family going through grief for decades, and how grief can arrest and impact the family structure.
When you first started writing, which part of the story came out?
It was the very first chapter. The first three chapters of the book came naturally. What you read in the book is untouched from the first draft that I submitted. I knew it was about a family that was going through grief. I knew I wanted it to take place between Trinidad and Toronto because I was born and raised in Trinidad and lived in Toronto. I wanted that sort of cross-generational mixture of family in the book as well – to see how each generation dealt with grief.
Did you always want to be a writer?
I don’t think I knew. It’s just one of those things that you think is impossible, so there’s no point dreaming about it. But when I was a young girl in Trinidad, I imagined myself carrying a leather briefcase and I don’t know why, but I knew I was going somewhere important, and I had something important to do. I always loved writing, but the truth is people get in the way and they dissuade you. It’s all around you – that the arts is not a viable career and if you pursue it, you have a 95% chance of failure. But after working 10 office jobs in three years, I’m like, ‘I’m not happy,’ so this is actually the failure. I knew I needed change.
How do you navigate the space of being told that art is not a viable career, especially in the Indo Caribbean community?
Those challenges were around me all the time. It wasn’t even my family, but it even comes from friends and acquaintances. When you’re young, being an artist is hard, and you’re told there’s no point in doing it. I listened to people who said that, and got office jobs and did what everyone else was doing because apparently, that was the way to be happy. Five years passed by and I realized I wasn’t happy and I should have never listened to those people. I started writing. I started doing something that made me happy and treated it as a serious craft. I did not treat it as a hobby, but as something that was going to pave my path. I really worked in a tunneled vision. So I never told anybody what I was doing – I didn’t want to be dissuaded. I had to be my own champion. I know that doesn’t sound healthy, but back in 2012, I didn’t know about community.
Cassandra, the main character is a writer, like yourself. How much of Cassandra’s story is your story?
My family is very supportive of my writing and it took some time for them to get there. Like many families, they kind of saw it as a hobby. Once they saw that I got published, they took it more seriously. Now, they are supportive of my writing and I think in the book, Cassandra’s family is not that supportive. They just weren’t interested in her writing, which is why she didn’t talk about it. It is a little bit reflective of my own experience.
It wasn’t based on a true story. That is something I get asked often – a lot of people say ‘she’s Trinidad and you’re Trinidadian.’ The places I wrote about are from my memory, but the plot itself is fiction. I wanted to challenge myself to write something truly fictional. I grew up in a household of strong Trinidadian women. I wanted to write about strong Trinidadian women, the roles they play, their histories and their backgrounds. The characters aren’t necessarily based on anyone particular in my life. Overall, it was a joy to imagine and write it because each one of these characters are very different from the other.
The novel has nine major female characters and at most three major male characters. Why did you want to tell a female-driven story?
I grew up in a family of predominantly women, and most of my Caribbean friends also grew up in families of predominantly women. They really are, in my experience, our caretakers. For me, my family and my friends, our mothers are our worlds – we love and admire them. Family is their priority; raising their children is their priority. I wanted to write about Trinidadian women because I wanted to tell each of their stories. I want more Indo Caribbean and Caribbean women in fiction. I think anything that I write will always be about Caribbean women. I want to contribute to that field of literature. I have such enormous respect for them; all the sacrifices that they’ve gone through to bring their kids to new countries – some of them single moms. There’s nothing else I really want to write about, to be honest.
One of the other things I noticed was keen attention to the setting. How many of these precise details came from your own life, if any of them?
For Trinidad, a lot of it is based on my memory of the island and my home there. But I did have to turn to my family for specific details that I thought I may have imagined. Because I grew up mostly in Toronto. I was insecure about writing about Trinidad, so I went back to my mom and my family, who lived there for over 40 years. In terms of the house in Toronto, some of that is from my experience and some from imagination. I’ve written and talked about this book before, “The Poetics of Space” by Gaston Bachelard, which examines the psychology of houses. I tried to construct a house that would accommodate the psychology of the characters. If the house seems very detailed, it’s because I made it so, to accommodate certain secrets and people’s personalities.
Why explore the psychology of a house?
It’s not an original thought, but I think the way space is organized around us, or the way we organize ourselves in a space dictates physical behavior. If you’re in a wide open space and you don’t know anyone, that can seem intimidating. If you’re in a closed space, that can also seem intimidating. I tried to organize the space to give each character privacy from the other, but then once they were in a common room, it really changed the dynamics of their interactions.
What makes a family?
I think people who have been through challenges with you for years make a family. That’s not even a blood thing – I have friends that are like family because we’ve been through things together over decades. It’s people you’ve experienced highs and lows with, but managed to stick with throughout the years. But ‘family’ can also be people who you haven’t talked to for years, who you’ve had a fragmented relationship with. For those sorts of relationships, it can be an unhealthy loyalty or a wondering of what could have been.
The book doesn’t have a happily-ever-after ending. Why?
Not ending the story in a neat little package was very important to me. I think there’s a certain expectation in storytelling by readers that a story needs a conclusion. And, to me, this is not what actually happens in the real world. The reasons people read a book are different – some people are reading for escapism, others are to better understand cultures and other people – so it depends on the reader and what they’re looking for. In literary fiction, readers are more open to an inconclusive ending because literary fiction can take things to a darker, more serious place than other genres. If I wrapped up the story with a nice little bow, it would be untrue to what this family has gone through. I wanted to show how unsolved issues can pan out. I didn’t want to take the story from a sad beginning to a happy ending. Not all stories end happily.
What do you want readers to take away from “Wild Fires?”
I set out to write a story that had a universal theme. I wanted to feature a somewhat normal story with Caribbean characters. It wasn’t centered around race or indentureship because a lot of the Indo Caribbean literature that I’ve read has been – and rightly so. That’s where I learned about our history and our stories. But that was not a story that I wanted to tell first because it was not the story that was closest to my heart. When I started writing, I realized the story was really about grief. I wanted to show Caribbean women and Indo Trinidadian women, in a universal light. We are a result of these histories yet go through normal things like grief, secrets and family dysfunction.
Following the publication of “Wild Fires,” Jai is pursuing her Master’s at Oxford University as a Kellogg’s Scholar. While attending school, she’s looking to write a short story about Caribbean joy to contrast the dark themes of her debut novel and portray Caribbean women in unrepresented ways.
“Wild Fires” is available in Canada and the UK and will be available in the U.S. in Spring 2023.
In an age where algorithms dictate viewership, Nancy Jay uses her love of dance to propel herself onto TikTok’s “for you” pages. Jay is an Indo Guyanese, Bronx native who began dancing at the age of three. As an influencer and content creator, she amassed a social media following of more than 500,000. Versed in many styles of dancing including Caribbean, Bollywood, urban and Latin, Jay can be spotted in soca music videos such as Linky First’s “Rock and Come in” and “Jeune Femme,” Adrian Dutchin’s “Roll” and by soca king Machel Montano’s “Mami Lo Tiene.”
Many content creators are typecast into the niche but Jay has defied this norm and proclaims she is more than just a dancer.
“I dance, travel, post lifestyle and beauty content. I’m an Indo Caribbean woman who enjoys being myself and promoting my culture. I like showing viewers it is okay to be who they are and embrace what they look like, despite what they see on social media. I did not plan on being a TikToker. As I started posting videos, the love and support I received from viewers was amazing. I have never experienced anything like that before on Instagram, where I started my content journey,” Jay said.
In conversation with Jay, the following answers have been condensed for concision and clarity.
Why is it important for you to create content related to your Indo Caribbean roots?
Growing up, I never felt represented as an Indo Caribbean on television, in movies, social media or anywhere else. My goal as a content creator is to promote the Indo Caribbean culture through my content and be the representation the Indo Caribbean community needs.
Are there unspoken rules about being a content creator or an Indo Caribbean woman on the platform?
Being an Indo Caribbean woman on TikTok can be challenging when you are trying to find your identity and do not feel represented.
Jay explains her frustration with the lack of Caribbean representation and acknowledgment from platforms, as well as her goals as a content creator in this video.
Do you ever experience a block, similar to writer’s block, when it comes to creating content? How do you overcome that?
I have yet to experience a block. However, I do have days where I want to take a break and just relax instead of filming. As a content creator, it is important to take breaks and schedule days to just relax because being a full-time content creator is a 24/7 business. It can be draining and you may lose your sense of reality when you have the mindset that everything is content. I enjoy taking a day or half a day to cook, watch TV or go shopping with my partner without the worry of filming any of it.
How has your social media presence changed your daily life?
When I am in public, supporters approach me to express their love for my content and sometimes ask for a selfie. When I find people staring at me in public now, it’s most likely because they recognize me from social media and not because I look funny.
In May of 2021, I used my platform to reach out to brands and ask for their support in a project I named ‘Nancy Jay Gives Back.’ I put together care packages, using products donated by brands, and drove around the Bronx sharing them with people experiencing homelessness or those in need. Seeing the happiness on their faces upon receiving these bags was priceless. Additionally, I spread some extra joy through dance. I remember one lady telling me she’d never been to a club or party so I told her I’ve brought the party to her and we danced to her favorite genre of music right there on the street.
Jay plans on continuing this project as her social media presence has grown.
How has your family reacted to your social presence?
My family has always been supportive of my talents and the path I have chosen. My first public dance performance was at the age of 12. I performed a fusion of Bollywood and chutney music at middle school events. When I got to high school, I participated in our talent show to a fusion of Bollywood, chutney, soca and top 40. I won the talent show three or four times. I also performed for fundraisers organized by mandirs in Queens, the Bronx, weddings, sweet sixteens and other social events.
My family always came out to support me. They love seeing my content and always encourage me to film and create. My mom in particular tells everyone about my TikTok videos.
While enrolled at John Jay College, Jay founded the first West Indian student organization called “West Indies Massive.” She captained the dance team, taught dance classes and won the talent show multiple times while pursuing her Bachelor of Science degree in criminal justice with a minor in law and police studies.
Any advice for creators who may not have the support of family?
Do not let this discourage you. If content creation is something you truly want to do, stay consistent and eventually your family will support you for doing what you love. Social media is still new to some and the idea of it being someone’s career or business is new as well. I say be patient. Also, talk to them about your social media goals, as perhaps they do not understand the full picture.
What is your dream partnership and why?
My dream partnership would involve acting. I’ve always wanted to be an actress, preferably a Bollywood actress because I know I would kill those dance numbers (haha!). Also, I would love to partner with Sandals Resorts and bring that Caribbean flavor they should be promoting.
Jay has collaborated with major brands like Samsung Mobile, Norwegian Cruise Line, AC Hotels, Disney Music Group, and Dunkin which is paramount for the Indo Caribbean community.
“I am the first Indo Caribbean woman to work with Norwegian Cruise Line as a content creator. Cruise travel is a huge part of my content journey. I love cruising and creating unique experiences and content. While cruising, I connected with the crew while most people typically do not. I treat everyone with respect,” Jay said
“I started a fun series called ‘Cruise Dances with the Crew’ back in August of 2021. There’s a playlist on TikTok with all of the fun dances. Prior to my first video, I had not seen anyone dancing on cruise ships with the crew. I guess you could say I started that trend.”
Nancy intertwined this partnership with her content and further put herself on the map.
Another pivotal partnership for Jay occurred in March 2021 when Dunkin chose her as one of 10 from a nationwide competition to feature her signature drink on the local menu.
How has content creation changed in the past two years?
Within the past two years, my content and style has grown tremendously. My gear list has also grown tremendously. I’ve been a content creator full time for a little over a year now. I have had more time to focus on the presentation and editing of my content.
What else do you want your viewers to not know about you or your work?
I stay true to who I am. Supporters who I’ve met in person can attest that I am the same, in-person and online. I like to keep things relatable, fun and authentic. I am working with a lot of big brands. I try to incorporate dance in all my content to capture my passion, diversity and culture.
I started teaching Caribbean Dance Fitness classes and private dance lessons officially in 2016. Since Covid, I moved everything online. Not only have I helped many learn how to dance but I have also helped build their confidence through dance and expression.
Lastly, I love traveling and encouraging others to live their best life.
Jay is more than a dancer; she is unapologetically herself. She maximizes opportunities and is building a brand that highlights her Indo Caribbean roots – a culture often not highlighted in mainstream media.