Reclaiming her Disability: Niluka Gunawardena
Updated: Jan 27, 2022
By Hansathi Pallewatte & Ruwani De Silva
Everystory Sri Lanka presents the first thirty stories from our ongoing work to create a compendium of Sri Lankan women’s stories — featuring those whose lives, work, and experiences have shaped and are shaped by Sri Lanka’s social, political, and cultural contexts. From the Stories of Sri Lankan Women Archive —Niluka Gunawardena
Illustration by Danushri Welikala- email@example.com
“It’s taken me about a good 20 years almost, to come to the realization that, no, there’s nothing wrong with me,” says Niluka Gunawardane, an advocate for the rights of persons with disabilities. Her personal experience of being born without her left forearm and a few other quirks allows her to understand the importance of her voice and she is dedicated to making sure that through her work, more people with disabilities and their families get to live in dignity, respect, and self-acceptance in this world.
Niluka’s journey in reclaiming her disability began, whether she knew it at the time or not, from her childhood itself, with her recollection of how disability is negatively portrayed in cartoons. “Scar is the bad guy, Captain Hook is the bad guy; seemingly disabled characters were portrayed as evil or undesirable or whatever it is,” she recalls, looking at a picture of when she dressed up as Captain Hook as a young adult (complete with a hook for a hand), in her attempt to reclaim the narrative around disability from evil and undesirable to cool and sexy. She is a harsh critic of the culture of shaming surrounding disabled children in Sri Lanka. “You have a baby with a disability and all you hear is things like, oh it’s- the baby’s bad karma or the mother’s bad karma or some kind of sin narrative and then the whole shame aspect of it…. it’s hush, hush,” she says, adding that we have “normalized that behavior in our culture.” “I have a lot of people still coming up to me and saying, ‘you must have done something horrible in a past life to be born like this’,’’ she reveals, her frustration palpable.
This social stigma surrounding disability unsurprisingly shaped Niluka’s childhood; “Many people would ask, what happened to your arm… Just to get me into a nursery was a struggle. After many attempts by my parents, I did get into a preschool but I was segregated. I was made to sit on my own at a table in a corner, and I just had to play with my own things. And during break, I couldn’t play with the other kids,” Niluka says. “That was the first time in my life when I felt different or excluded.”
Her interactions with her extended family were also strained at times. Niluka told us the story of how her extended family was reluctant to have her as a flower girl at a family wedding because “oh, it may not look nice in the photos.”
However, behind every strong woman is an even stronger woman, and these words could not be truer for Niluka, whose number one champion in life is her mother. “A total lioness,” Niluka says, referring to her mother who, “was a working woman, she had all these things but she’d- on the weekends, just sit down with me and figure out how you can thread a needle with one hand etc…” She remembers her mother “showing me in different ways that I can do everything that a so-called normal person can, from sweeping the floor to making your bedroom, basic things since [when] I was young.”
Her gratitude towards her mother is apparent, Niluka telling us that “you kind of take it for granted” when she had her mother behind her every step of the way — whether it be getting another seamstress to get the same flower girl outfit done and then researching on prosthetic arms and getting a glove from abroad for her to attend a wedding as a flower girl, or to stand up to her school principal in order for Niluka to play the part of the Dwarf instead of her assigned role of the ‘wicked witch’ in a pre-school play. “She actually left everything that she was doing here and came with me to the university,” Niluka says, recalling her time as an undergraduate student when she went through a particularly difficult period with regards to her mental health. “You’re going to go back to university. I’m going to come back with you,” her mother told her, and so they did, enabling Niluka to complete her undergraduate studies with flying colours.
Niluka does not mince her words when sharing her struggles with her mental health. “My biggest achievement is staying alive,” she says, when asked about what she is proud of the most. “I’ve been this overachiever who’s always trying to prove myself, trying to be better, trying to be number one, when I was younger” she recalls, “especially in my teens and early 20s, you internalize [the social stigma attached to being born disabled and narratives of bad karma] right? So I can remember having a very strong sense of I’m a bad person, you know like I’m somehow a criminal.”
She describes her experiences as a teenager and youth as ‘exhausting’ because she was constantly trying to prove herself or explain her very existence. . “I really struggled a lot with depression and self-harm because of that and other traumatic life experiences” she reveals..” Nevertheless, in spite of all of the tough times, she’s experienced, Niluka is humble enough to identify her privilege and uses it to inspire her advocacy even further, stating that “I come from an extremely privileged background and then imagine people who are from more rural or lower socioeconomic status [or] backgrounds, it must be like… if I get this sh*t, imagine what others must be facing.” These realizations led her to do a Masters in Disability and Gender and actively advocate for the rights of persons with disabilities. Her navigation of life with a long-term psychosocial disability has also led her to speak out for the destigmatization of mental illness and the promotion of holistic mental wellbeing.
When asked about how and when she realized that things aren’t the way they’re supposed to be, Niluka points to the academic research she did for her undergraduate thesis, based around the geographical perspective of disability. “I started reading more about disability, although I was at that point still uncomfortable with identifying myself as a disabled person,” she says, “and I realized, shoot, this is not just about me, 15% of the global population has some form of disability. This is a much more common experience! I started reading the theoretical aspects like critical disability studies, feminist disability studies, and where people really unpack and critique and that really helped me.” She channeled her knowledge when working as a high school teacher, a consultant for the Ministry of Education and mindfulness teacher. She hopes to work more with teachers to bring in mindfulness regarding disability, and then to look at respect for diversity through mindfulness-based interventions in schools. Niluka has also developed a curriculum for disability sensitization for staff, academic and non-academic for Colombo University. Niluka currently teaches Disability Studies at the tertiary level and serves on multipleinternational advisory committees to encourage and influence others to think about disability and diversity in more critical and emancipatory ways.
“The recognition of the dignity of all persons is really what it kind of boils down to, you know,” she declares, saying, “We belong, all of us. And that’s like, [in] the larger scheme of things that’s what I’m really working towards.”
If there is a message she wishes to impart to any girl out there, it’s this: “you’re a gift to this world, regardless of how you come to this world, what your abilities or skills are. We’re all diverse in that way. It’s taken me about a good 20 years almost, to come to the realization that, no, there’s nothing wrong with me.” And you will realize that too, because “we’re beautiful, you and I.”
(Ruwani De Silva identifies as a feminist activist, master trainer, and digital media and brand consultant. Based in Colombo, she’s interested in building strategies and educational material that reaches every part of the country on all social issues. As a trilingual trainer, she also takes pride in traveling to all parts of the country to conduct programs and discussions with youth and women.)
(Hansathi Pallewatte is an eighteen-year-old student on a gap year and is one of the youngest members of the ESSL team. An avid speaker, reader, and debater, her loud opinions and unwavering dedication to proving her haters wrong oftentimes land her in a spot of trouble with her elders. She hopes to further her knowledge on women’s rights advocacy and international relations and will be pursuing a degree in Law at the University of Cambridge come September 2021.)
Reference Links and Further Reading
Universalising Education for the differently-abled, themorning.lk, 9th May 2021, https://www.themorning.lk/universalising-education-for-the-differently-abled-niluka-gunawardena-on-the-reforms-sri-lankan-education-needs-for-truly-inclusive-education/
Stumped: The possibilities and pitfalls of a cyborg world, Skin Stories ft. Point of View, 27th August 2019, https://medium.com/skin-stories/stumped-the-possibilities-and-pitfalls-of-a-cyborg-world-eb7c0b6e957c
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