My Story: From Growing Up With Constant Pain & Discomfort To Becoming An Adcovate For Disability Rights

The Logical Indian Crew India

August 25th, 2019 / 1:18 PM

“Ouch, Aaah, Oh God! why me, It’s unbearable”, these are our daily responses when we are not comfortable with physical aches or even when we see a pimple knocking on our skin. Now, imagine living a life where the sound of a pressure cooker whistle, loud music, or even a cough, crushing your bones within your body, into pieces! Imagine your bones crumbling within your body on its own will, without any intimation or symptoms. It’s hard to find vocabularies to express yourself, right? 

I am Dhanya Ravi, a 29-year-old Disability Evangelist born with a collagen deficiency termed Osteogenesis Imperfecta (OI), also known as “Brittle bone disease.” Which makes her bones extremely fragile.

My parents used to physically carry me everywhere – from my childhood until I got used with my BMW (wheelchair). Even now they do if places are not accessible. 

I spent my childhood days full of pain. But what was even more painful was to see my parents struggling and striving hard to help me lead a life devoid of these hardships. They wanted me to be like others, so badly. All I wanted was experience a painless and healthy life. But yet no matter how hard I tried, in just a snap everything would come crumbling down.

Life has been a constant battle, due to the lack of awareness and understanding of what to do or not to do was a great challenge, especially during my childhood. I have faced countless reaction and comments by society on my disability. I have seen people purposely trying to ignore me when I pass by and also people who keep staring at me as if I am from another planet.

I have been stared at so bad by people as if I was an alien, but all these reasons gave my existence to live a life of possibilities. However, these social barriers never let my spirits down in any way. It is not about fighting with fate, it’s about creating your own destination with thoughtful choices.

Because of my condition and lack of accessibility, I couldn’t attend a mainstream school. However, I did not let any of that come in the way of realising my aspirations. In spite of several challenges, I equipped myself with knowledge through homeschooling, distance education and online certifications.

Our educational institutes and workspaces are not very suited to accommodate people with chronic diseases. However, to live a life without judgement and pity, people like me have to often push ourselves to the point that our condition does not come in our way.

However, I am in a way grateful for my disease as it has helped me unleash my creative side. It would have been left unexplored had I led a ‘normal’ corporate life. Getting involved in creative work can make a difference in one’s life. In a way, it helps in understanding life better. In our society, living with a disability comes with a lot of stereotypes and assumptions. However, I’m indebted to my friends, mentors and workmates who believed in me more than my disability.

I am grateful that I found out my true mission, that is to uplift the ones born with disabilities and to spread awareness about rare diseases. My mission makes me go to sleep with satisfaction. It keeps me motivated and helps me lead a life of contentment. 

I am on my humble journey of making the impossible – possible. I believe there are possibilities in every adverse situation. Being at home with the comfort of the internet I work as a freelance content writer, digital marketer and disability evangelist. I am not earning dollars but I am doing something that I was never taught to do.

I advocate the need for a more inclusive society and strive to raise awareness about rare genetic conditions. There is no permanent cure for OI but I wish to bring in a policy wherein it is mandatory to screen for genetic diseases at the early stages of pregnancy.

 

When I was born, there were fewer opportunities, but now we are at a space where everyone can do something better. I believe people must develop an awareness to accept disability and help add colours to at least one life. The amount required to raise a special child in a family is triple times higher than raising a physically fit person.

Every single rupee, given through an open heart may be a reason to bring a smile on someone’s face. With my experience, when we get an acceptance in the society, it not only brings joy to us, it also brings joy to our parents, our family members, and our near and dear ones. Even contribution of a rupee sometimes is enough to bring a smile on helpless faces. My connections with NGOs gifted me many special friends.

I am on a significant mission. I am trying to raise  Rs 2,00,000 lakh fund for treatment of my two young friends who are facing rare diseases. 9-year-old Brunda suffers from  Phenylketonuria (PKU). PKU is an inborn metabolism defect which results in decreased metabolism of amino acid phenylalanine. If left untreated, it can lead to intellectual disability, seizures, behavioural problems, and mental disorders.

My other friend, 7-year-old Pranav suffers from cerebral palsy. He underwent two surgeries-Selective Dorsel Rhizotom and PERCS.

The money I am trying to raise will help in buying Brunda’s daily supplements which cost more than Rs 2000 and towards Pranav’s post-surgery Intensive Physiotherapy, hippotherapy and Hydrotherapy.

 

My soul perfectly fits into the slogan, “Impossible is Nothing”


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Contributors

Written by : My Story (Guest Author)

Edited by : Shraddha Goled

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