Deafblind Awareness Week: Interview with Karan Nagrani
Deafblind Awareness Week 2022 runs from the 27th of June to the 3rd of July, and is dedicated to raising awareness for deafblindness, a combination of sight and hearing loss that affects a person’s ability to communicate, access information, and get around. According to the World Federation of the Deafblind (WFDB), more than 600 million people around the world are living with deafblindness, due to any of more than 70 causes. The most common genetic cause of deafblindness is Usher syndrome, which involves hearing loss and progressive sight loss called retinitis pigmentosa (RP).
In honour of this week, we’re telling the story of Karan Nagrani, a disability advocate living in Australia who uses Instagram to raise awareness for RP and Usher syndrome. Karan wanted to be a pilot when he was a child, having the desire to fly far away, but at a very young age he started to lose his vision. Soon after, he was diagnosed with retinitis pigmentosa, a condition he shares with his mother. Karan struggled with night blindness as a teenager and in his mid-20s started losing his hearing as well. At the age of 36, he now has fewer than three degrees of peripheral vision and uses hearing aids and a cane.
Karan originally chose a career in marketing, which he admits is a path that’s very dependent on sight as it involves creating graphics, videos, and other visual material. After many successful years in marketing, the deterioration of his vision made him unable to continue in this field. While Karan’s condition has impacted him physically and mentally, he’s found support in loved ones, like his husband David. In the beginning, being both gay and blind were two secrets Karan felt he had to hide, but now he can be open about who he is, and he uses his position to inform and give hope to others.
Karan now channels his creativity into making content on Instagram where he aims to raise awareness for vision and hearing loss. He shows what it’s like living with an inherited retinal degeneration (IRD) on a daily basis, and many of his posts involve comparing what a fully sighted person sees to what Karan sees in places such as parking garages, grocery stores, and shopping malls. Karan says having someone show him what living with RP is actually like would’ve been “life-changing” for him. He also posts about common questions and reactions he gets from others, information about RP and Usher syndrome, and jokes. His content is relatable and humorous, but he stays honest about the effect his multi-sensory impairment has had on him.
Karan admits it hasn’t always been easy for him, losing his independence and having to leave a career he loved has had an impact on his mental health, but he wants others to know it’s okay to not be okay, to have ups and downs. “It is normal to have mental health issues, because what you’re going through is hard,” he says. “You have to validate your situation. You are allowed to feel down.” He also wants people to know that blindness is a spectrum. Many people may think someone with RP doesn’t “look blind,” but everyone’s situation is different, and Karan works to show the range of what the word “blind” can mean.
In addition to his rapidly growing Instagram, Karan also creates content for ABC, including reels and articles. Karan hopes to serve as the source of support that he wished he had when coming to terms with his diagnosis. He says the most important goal of his content creation is to “invite people with open arms” to message him if they need someone to talk to without feeling judged. For anyone looking for connection, information, and even a bit of humour about retinitis pigmentosa and Usher syndrome, you can follow Karan on Instagram @KarannNagrani.