My name is Karan Sunil Shah. I am 21 years old. I have type III Spinal Muscular Atrophy or SMA. SMA is a genetic disease that affects the motor nerves that control voluntary muscle movement.
It was tough growing up especially in a city like Mumbai which is not wheel-chair friendly at all. My parents had to search for schools and colleges that would accommodate me. Many schools rejected me assuming that I was also mentally incapacitated. People do not realize that SMA does not affect the intelligence quotient of any person. I finally went to Aditya Birla Integrated School, which was known as JBCN, but it was not very wheel-chair friendly either. However, the school provided me with special aid and helped me adjust and overcome my dyslexia. Making friends initially was not easy. I was judged about my condition, but my communication skills became my icebreaker. I soon became notorious for being the mischievous kid on the motorized chair. I was known for pulling pranks and being the smart-ass. I was the speaker every annual day function.
My older brother too had SMA, his being type II. He passed away due to a cardiac arrest at the age of 14 years. He was just a year older than me. It was a trying time for me and my parents. A few years later, I had enrolled for Shamak Davar’s dance classes, which he conducts for special needs children and kids with cancer, etc. Once he came home to meet me and told me I needed an angel in my life. It made no sense then but soon after, he gifted me a female Labrador pup called “Angel”. Being a dog-lover, I was thrilled. I went on to then Google search for a trainer who could train my puppy. I came across Shirin Merchant who advised me that it should be me and not anyone else who should train my pup. So I undertook her training course and learned to become a Dog Behaviorist myself. Angel is a very mischievous (like me) and active dog with lots of energy but also receptive to learning. She is now 5.9 years old and I have trained her to perform several tasks.
• Removing my socks when I reach home.
• Putting away my shoes in the shoe drawer.
• Handing me keys to lock my cupboard.
• Pulling the blanket over me when I’m lying down.
• Calling my mother on command: she goes and barks at her three times.
• Fetching the morning newspaper which she usually hands over to my dad.
• Bringing my phone.
• Following the Swachh Bharath Udyan: will pick up trash and put it in the bin.
I continue to teach her new things even today. Angel & I also make the best tag team, where we go to schools, colleges, NGO’s, old age homes etc. and spread awareness on how to have a positive approach towards life and yes also Angel gets an opportunity to show of her skills! We also do therapy sessions with children / adults with mental stress or disability.
I have a few select but close friends that I hang out with. Going out to restaurants is a task because I have to call and check on their ramp access. Many a times, I must send someone to check out the premises in person. I love watching Bollywood movies but again most theatres are not accessible for me. Like any young guy, I religiously follow social media sites. I occasionally write articles on my Facebook page and have over 30,000 followers on my Tic Tok app profile. Funnily, I have also received marriage proposals from viewers who watch my videos on this app.
What keeps me busy
I divide my week between two jobs: one being working at the family business of a retail clothing store and manufacturing unit for garments and the other as a Professional Certified Canine trainer & Behaviorist. I also volunteer with WSD or Welfare of Stray Dogs, a local NGO in Mumbai.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
Not finding wheel-chair access easily has been the biggest challenge for me. I hope that changes in a big metro like Mumbai. I believe that it is the normal people who require advice and education and not people like me. I want to tell the ‘normal’ person, that we do not need any pity, sympathy, or guidance on how to live our lives. I am neither special nor disabled, I’m just me! To further emphasize on this point, I have started a hashtag called#differentlynormal which can be found on Facebook and other social media sites. Recently I was doing marketing for our new manufacturing unit, and I was visiting local garments stores door to door all over Mumbai. In the process I suffered a lot when it comes to nature’s call as I realized that none of the Sulabh Shauchalaya are wheelchair accessible, and the pain I suffered from, no one can understand! There is so much awareness on #SwachhBharat and all, but where do people like us stand in such campaigns when it’s not accessible at all! From Dadar to Vile Parle, I had crossed many Sulabh Shauchalaya’s and only one was accessible that also not 100%! Hence this petition for all those people who suffer due to lack of accessibility. It’s not only Mumbai, but even on highways etc. hardly one or two accessible! I have a list of the Sulabh Shauchalaya in different areas, and whether they are accessible or, and the results are disappointing. I DEMAND BASIC NEEDS. I DEMAND ACCESSIBLE TOILETS. #ACCESSIBLETOILETS #KARANSHAHH
Bharat Prerna Award
Student of the Year Jr. School
Student of the year Sr.School
Angel receiving Brave Heart Award from Government
Angel awarded best dog of the year 2019