Fighting away disabilities

Life tries to teach us lessons in the most unexpected way. Hasitha Illa, a disability advocate and motivational speaker, was diagnosed with a rare and progressive neurological disease with no cure. Speaking about her situation, Hasitha says, "Certain situations like these can potentially crush a human being from the inside. However, everyone can reach that 'turning point' where you start accepting and moving on with your normal life." As a result, she came up with her first book 'Wheeling Away' in which the protagonist learns how to be a better ally to the ones with disabilities.

Speaking about her journey, Hasitha said, "We are a family of four, and I am the eldest with one younger brother. I was born in Kakinada, Andhra Pradesh, and we moved to the USA for my dad's job when I was like nine months! My schooling (half) was done in USA, and six years after I was born, my brother came into this life. He was still a toddler when I was experiencing symptoms of something which would eventually change our lives! My parents were juggling between a toddler and my doctor appointments to find a diagnosis for over two years. I was limping, dropping plates, and it took so long to find out what was wrong. The anxiety was real for all of us. When I was 10, finally confirmed that I had Friedreich's Ataxia which is a neurodegenerative disease. What mainly sucks with this disease is the coordination issue. It's called a drunken disease for this reason and the fact that it deteriorates. It gets worse with time.

I try to be as independent as I can and as much as my condition permits. "I am a wheelchair user, so I get a lot of help from my parents as I need help for my daily activities. On days when I do go to office, I use a special bus - which picks and drops me off and other disabled people as well. I try to be as independent as I can and as much as my condition permits. Friedreich's Ataxia causes chronic fatigue so, by the end of the day I am extremely tired. We are also shipping out the (newly published) books within the USA and we, as a family, work together to do this. It is truly passion project of mine and a side hustle," says Hasitha about her daily routine.

Speaking about her book 'Wheeling Away', Hasitha says, "'Wheeling Away' is the story of a boy called Aarav whose father is in the Indian Army. He loves making new friends. Aarav's father is posted in a new army station, which means a new school for Aarav. In this new school, he builds a unique friendship that makes him understand the hardships that a person with a disability faces, whether it's an internal struggle, inaccessibility or with people. He learns how to be a better ally to the ones with the disabilities."

"Our intent of this book is to spread disability awareness among children and eventually be able to introduce them in school. Education on disability is so important because if children become more aware, then that will shape a more inclusive future! It will pave the way in changing perceptions of disability and create a social impact," she added.

Hasitha says, "'Wheeling Away' is the epitome of my childhood (and many others with disabilities). Events inspired the story in my life, but I wouldn't say it's an autobiography. Instead, it is a fictional story with certain aspects inspired from my life. Aarav's character is the takeaway from this book. The most common question I get as a wheelchair user is how I approach or interact with someone with a disability. Most people feel uncomfortable, and I felt that the best way to answer this question is to show it. Implementation becomes easier when one can visually see it and while working on this book, I constantly wished I had a friend like Aarav at that age." Kids have often bullied me in school for being different, and this quickly became one of the most depressing phases of my life. Hasitha says, "As a kid, I didn't have many friends at school, and I was pretty much alone most of the time. Kids have often bullied me in school for being different, and this easily became one of the most depressing phases of my life. No child deserves to be that way; the only reason it happened was a lack of awareness. That is the main reason I wanted this book published."

Sharing her experiences, Hasitha said, "I enjoyed writing this book, and I feel my true passion lies in writing books and to create disability awareness. In addition, I love creating content on disability via social media. I hope 'Wheeling Away' will touch peoples' lives!

(You can find Hasitha Illa @lifewithhasi)