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My Brother, My Role Model

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By Jui Agrawal, Guest Blogger

I am the lucky younger sister of Chinmay Khaladkar. When I think about him, I smile because of all the happy memories that he brings to mind. Whether it is his love for music, cars, travel, or eggplant parmesan, he enriches my life beyond words. Having been born with Cerebral Palsy, and the complications that have accompanied his condition, he has unyielding optimism that makes me proud to be his sister.

My family has been lucky enough to travel extensively, expand our worldview and experience the cultures of many countries. However, the one journey that helped me grow the most has been at home, as I’ve watched my role model, my brother, grow and become the most loving and happiest of people.

Through Chinmay’s eyes you see a world where everyone is good and intentions are always pure. He has a way of talking to strangers, laughing at your most lame joke, and making long-lasting friendships. His celebrations always bring together his biggest fans, whether it’s his therapist of 30 years, friends from kindergarten, or family from across the country- a reminder of all the people he has touched with his love.

Over the years, as our family has celebrated Diwali, the Hindu new year, there is a ceremony when the brother gives the sister a gift as a token of appreciation. Chinmay, not having the ability to drive on his own and get me a present, has repeatedly put his paycheck in an envelope addressed to me in his scrawling letters- flooring me his gesture, and showing me the true meaning of selflessness.

Starting at a young age Chinmay has always been the one looking out for me. Whether it was holding my scared small hand as we went into the darkened basement for a game of hide and seek, or coming to my defense when my parents were angry at me for missing curfew, he has always consoled and protected me, being a true protective older brother.

Despite our connection, we’ve shared the same problems that all siblings face- the squabbles, the jealousies and the competitions. Chinmay will never graduate from college or drive a car, and as I’ve hit these milestones throughout the years, he has had a hard time dealing with my moving on from our days of playing pretend. Though I have spread my proverbial wings, he feels as though I have left him behind in my journey- Chinmay, an eternal child at heart, will never fully understand that it is because of his love and support that I have learned to fly. For both of us.

As we journey through adulthood, I have become increasingly inspired by Chinmay and realized that I want to dedicate my career to the advocacy of people with intellectual and developmental disabilities. I know that without him, I would not see this extraordinary community as having the humility, grace, and determination that they embody.

Jui Agrawal is pursuing a Master in Public Policy degree at the Bloustein School for Planning and Public Policy at Rutgers University. She currently works at the John J. Heldrich Center for Workforce Development on campus assisting with research related to disability employment. Jui has spent time working in Washington, DC, both at the Pew Charitable Trusts and a boutique government relations firm focusing on environmental, tax, and health policy issues. Most recently, she has interned with The Arc of California and United Cerebral Policy, and will be joining The Arc’s national office in Washington, DC this summer 2013 Paul Marchand intern.

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My Definition of Autism

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April is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Amy Goodman is co-director of Autism NOW and an individual on the spectrum. Below is her personal definition of autism. Follow the conversation this month online using #autismaware.

Being an individual on the autism spectrum means that I have a diagnosis of autism. So what? It doesn’t matter in the long run because it does not define who I am or what I can or cannot do. First and foremost, I am Amy, an individual who happens to have a diagnosis of autism. I don’t let it get in my way of anything. It does not present any challenges for me and if it does, I work to overcome those challenges by finding a way to jump through the hurdle and succeed at everything I do or try.

For me, it has been a positive experience finding out that I was on the spectrum. I have embraced it and used it to my advantage. It opened a lot of doors that otherwise would have stayed closed. I was able to move forward with my life when I found out. I went to Graduate school and chose the path that was best for me. It helped me to focus on what I wanted to do with my life.

Knowing I was on the spectrum, and knowing that I could be a success has helped me to jump the biggest hurdle of all, obtaining and keeping a job in the autism field. The opportunities have been endless and by embracing my autism, I have grown as an adult. I finally found what I had been looking for more than 30 years – an answer to what direction I should go, and where I fit in in this world.

Explaining to someone not on the spectrum is very difficult. They just don’t seem to understand why I do what I do. They are always being pessimistic and saying that there is nothing wrong with me, which in this case is true. There is nothing wrong with me. It’s the attitude of others that only see the glass as half empty and that I’m not capable of doing anything at all. That is something that needs to be fixed. Me? I’m the optimist. Don’t fix what isn’t broken. Fine tune it. If someone is on the spectrum, utilize their abilities and accommodate their needs, don’t question them. Work with them to maximize their brain capacity. See the situation through their eyes. Give them a chance to excel and most of all treat them with respect and dignity.

We may not be the most social of beings, but we certainly can learn and grow from our mistakes. Just remember there is more than one way to skin a cat, so explaining what it’s like living with autism is different for everyone on the spectrum. I don’t need to explain anything because I’m perfect the way I am. If I don’t like something I avoid it. If it hurts my ears, I wear earplugs or noise canceling headphones. There is a solution for every problem, one just has to do what is best for them and not worry about what others think.

Autism is part of me, so it should not define me or need explaining at all. Not everyone can pass as “normal” or “neurotypical” but who wants to be like them anyway? I am who I am and there is no changing me. Accept me for who I am and you will see autism in a whole new light.