A lot among us, and no offence, never stop cribbing about how much life is unfair and how much privileged few other humans are. But in this inconsequential rat-race competition, we often tend to forget about those who are constantly struggling with life and yet fighting back, growing and inspiring several other people.
Hasitha Illa, another superwoman I can’t stop boasting about, is one such person who is being a role model and inspiration to many people — who is redefining life with her blogs, YouTube videos and an undying zeal of living life to the fullest.
A native of Hyderabad, she was diagnosed with a super rare disease called Friedreich’s Ataxia. From getting dragged into a depression to becoming a stronger woman, she has come a long way. That traumatic experience turned her into a stronger and positive person. Today Hasi, as her folks call her lovingly, love to write and is pretty confident on camera.
For those who don’t know, Friedreich’s Ataxia is a genetic disorder which means the information to make a protein (gene) is disrupted. To develop Friedreich’s Ataxia, one needs two defective copies of genes (one from each parent). This defective gene forms an improperly functioning protein, Frataxin. Frataxin plays a role in giving energy to cells, and damage to this protein affects the neurons which carry signals to the brain, the spine and the heart that are in constant need of energy.
Overall, there is constant nerve degeneration happening throughout the life resulting in the disease to be progressive. One who is diagnosed will initially walk but, eventually will become wheelchair-users for the rest of their life. Also, there can be chances of becoming bedridden in the later stages.
Born in India and brought up in the USA, Hasitha was diagnosed with Friedreich’s Ataxia at the age of 10, and it’s been almost a decade since she returned back to her homeland with her family. At present, she resides in Pune and wishes to explore the world. She owns a blog Life With Hasi and runs a YouTube channel LifeWithHasi where she keeps inspiring her folks with something new every day.
“Our disability community lacks representation. Whether it’s in acting for movies, modelling or any other profession, able-bodies are preferred and disabled are neglected. We never see Barbie dolls or Legos using a wheelchair, and we never see a girl with a cane modelling for a shirt at Westside. Representation never existed, and we are in dire need of it,” Hasitha shares on asking about why she started this channel. She always wanted to advocate disability and thus started this wonder around March this year.
“My blogs and videos bring awareness to the public that we can live a ‘normal’ life, just like anyone else. A big plus is that I serve as an inspiration and a role model to many out there, even abled-bodies. This gives me an added opportunity to focus on mental health because it matters before anything and needs to be less of a stigma. Mental Health is something I, as a disabled woman, always struggled with, and it is high time we normalise it!
Acceptance isn’t the only struggle we have with our disability, but, it’s much more than that. It’s a mix of issues with mental health, society and inaccessibility! And bringing awareness is key,” she further adds. Hasitha does everything on her own — right from filming to editing to promoting the videos on her channel.
“I was a completely extroverted child who loved new faces, being wild and saying anything I felt. But over the years, I changed from exuberant to contained and an extrovert to an ambivert. This wasn’t a personal choice; rather, I was in a helpless situation,” shares the 24-year-old Pune girl who aims at smashing the societal rules. “My hostel experiences have taught me to enjoy solitude and the company of myself.”
Hasitha has conquered her battles and is still fighting every day — and the fact that she is not ready to give up, in any case, makes her even more wonderful. She has given motivations speeches at a lot of events which also includes one in front of more than 50,000 people including Shankar Mahadevan.
“The whole day was a magical experience where I felt as if I swapped lives with a celebrity. This initial event led to many more speeches and boosted my confidence in starting a blog as well as a youtube. Hoping for many more experiences that touch hearts and bring about change!” quotes her blog on describing her day at that event.
Hasitha also does various Instagram lives with women who are mothers and aims at normalising disability to our current generation. “I’ve learnt a lot from my disability, and I’m grateful to where I’m today. This condition of mine made me explore life more, and made it possible for me to come this far,” she says.
Disabled people in on our country are seen with pity and treated with sympathy which Hasitha wish to change, “We need to think of them as a normal person like any other person. They don’t need our pity and millions of unwanted questions!”
Hasitha also talks and write actively about mental health as her disease also pushed her into depression, and it took her a lot of time and counselling to get out of it. Being someone who has gone through it, she knows how much this less talked disease take out from my life. She encourages people to share and talk their heart out to people they love and admire.
She concludes with asking people never to give up and, no matter what, make a goal for themselves and constantly move towards it. She further wishes to write a book and inspire several more people.
I found Hasitha a free spirit for whom this world is a stage, wheelchair her prop and life an art which she wishes to perform until her last breath. The child inside her made me think if people really need to crib about how much life is unfair? You can connect with her via her Instagram account. Click here to visit her blog and do not forget to subscribe to her YouTube channel. #ShowLove