What Do You Do When You Lose Your Vision In Your 20s? You Stand Up And Fight Says Guneet Sethi

“I didn’t want to become a bichari. And I didn’t want to wear a badge of disability. I think that was what gave me the strength to get up.”, says Guneet, who was diagnosed with a rare genetic condition called Retinitis Pigmentosa that resulted in 100% loss of vision over a period of time. 

Felicitated with a National Award by the government of India in recognition of her outstanding performance as a role model among persons with disabilities, motivational speaker and training facilitator Guneet Sethi is 100% visually challenged. But she was not born blind. In the prime of her 20s, she was diagnosed with a rare genetic condition called Retinitis Pigmentosa. While in most it manifests itself late in life, she was in her twenties when she discovered it. The disease that started with partial visual impairment progressed and led to complete blindness. Today, she is 100% officially blind.

What was to be a 20 minutes conversation freely flowed into an hour plus of goosebumps moments sprinkled with life lessons shared most unassumingly. 

Anusha: Guneet, what an honor to speak to you. Could you tell us a bit about the years when you dealt with losing 100% visibility? After all, you weren’t born blind.

Guneet: Yes, I wasn’t born blind. I developed this disorder in my 20s. Talking in an orthodox way, the 20s is a crucial age for women both from career and personal settlements point of view. So, my prime age was shaken because of the onset of this disease. I was almost at the cusp of a bright future in my career at that time. I was teaching in a very prestigious public school. And I was such an outdoor person. All was going very well for me when this disease hit me.

So, it was tough. I won’t say it was a cakewalk. I had lived 20 years of my life as a sighted person and I lived a beautiful life. But I have also lived more than that many years as a blind person. I have gone through the phase when the onset of the condition took 5-6 years. And that was horrible.

5 to 6 years!!

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Yes…that’s a very long time. I used to sleep every night wondering what I will not be able to do the next morning. My checkpoints were in the newspaper. There is a heading, a smaller heading, then there is an even smaller heading. The newspaper used to be kept on the table at home. With the corner of my eye, I used to see what all I could see on the front page…till what font size could I read. That whole thing was crazy.

I cannot even imagine what you went through losing your sight gradually over 6 years. How did you manage after that phase? Did you start to look for work opportunities at that time?

No no…I went into a denial mode for about 3-4 years. And I was shattered because the doctors did give their prognosis saying that it would lead to blindness. But I was not ready to accept the prognosis. The doctor told me immediately, please don’t drive. And I thought to myself, “Who the hell are you to tell me not to drive…I am going to drive.” Till one day, sure enough I hit the car in a side lane as my side vision started deteriorating first. That moment I understood I had to stop driving now. 

So, you know that whole aura of waiting to get blind, the whole infrastructure around it, was not okay and this whole concept of “Ab ye bichari kya karegi?” (What will this poor woman do?), it was horrible. 

I just could not relate the word “bichari” prefixed to my name. I didn’t want to become a bichari. And I did not want to wear a badge of disability. I think that was what gave me the strength to get up and get over my denial phase because my heart was not ready to accept it’s finished. 

So I began to take baby steps, first for myself because until and unless I was sure of myself, I had no business to convince others or tell others what I wanted, right? I decided, “I have everything – a comfortable home, protective parents. It’s just that my eyes are not there. So let me think about what I could do without my eyes.” Believe me, when I started to make a list of what I could do, it was a fairly long one. 

So you completely changed your perspective on the adversity…

You see if the adversity doesn’t hit you, you don’t realize what’s in there and what you’re capable of. When this hit me, I was blank. I didn’t know what braille was. I didn’t know there was a software called JAWS (Jobs Access With Speech) that was in the market for people with visual impairment. 

So I have always believed this – when you begin to think in a particular direction and you begin to put your energy to where you want to go, then the universe does help you. In my case, I got friends who did not pity me but showed me the way. They made sure that I go with them to restaurants, to a party, gave me the confidence that I can move out, I can live a normal life, I can dress well… They gave my mother that confidence that “we will pick her up and drop her back.” 

But it was a couple of years before I gathered myself to the point when I said, “I have to do something now.” So, despite my parents not agreeing to me going out for a job or to an office, I said, “Nothing will happen. If I have to fall and get hurt, that can happen at home too right?” 

In that process, I met people who told me, “Why don’t you learn this software for the visually impaired through which you could use the computer?” I had not touched the computer before all this happened. So when I learned to use that software on the computer, I could read the screen with the software’s text-to-speech output! I was like “Wow!! I can read and write again!” It was fulfilling and after that, I also developed some confidence. That’s when the front desk job happened at a friend’s office. It was all on the phone and voice. So, I decided “Let me start my life.”

And since then, you’ve been a teacher, a front office communications manager, creative writer, trainer, a TedX speaker, and now a motivational speaker and training facilitator. 

Yes, slowly, slowly… I started nurturing the communication skills that I always had. I always wanted to do things with my voice – so I started meeting people and doing auditions for voiceovers. Now the sensitivity in the mainstream was not much. So they would look at me like “You can’t see…how will you do it?” They never said it in so many words, but that’s what they meant. I would tell them, “You need my voice for a voice-over. What do you have to do with my eyes?” 

And how did they react? Dumbfounded? 

(Laughs) Not always… Sometimes the concerns were valid like, “How will you read the script?” So I would tell them, “If you give me the softcopy of the script, I have a software with which I will be able to read it. I will also memorize it. Try me out!”

So things happened slowly because I wanted to prove to myself more than anybody else that I can live with blindness while I live in the mainstream. Every time I achieved something, I would visualize another feather in my cap – “Oh wow I’ve learned how to use the internet.” “Oh wow! Today I made a pdf!” “Today I wrote and sent my first email!” So everything was like wow for me. I celebrated every achievement of mine. Maybe not in a big way but in my heart I did. 

I also kept learning to do the things others do but in a different way. I understood the importance of touch and sound. And technology is now my best friend. With it, you can do everything. And all through the journey, I’ve met wonderful people – people who are sensitive, who give you that space to develop, who give you that space to understand. 

You know, I would have easily gotten a teaching job in a blind school. And I was more than happy to do a voluntary job then. But for my bread and butter, I wanted to be in the mainstream. Yes, it was a struggle on a day to day basis. And I chose that. Because people needed to understand that I can work if not at par at least almost at par. 

Could you share some experiences on the day to day struggles you mentioned in the mainstream? And especially how you fought those battles?

Ah! So, I did experience some kind of unconscious biases. Even today after so many years, I feel there is a struggle when I have to meet new people. There is an apprehension in their minds. But that doesn’t matter. I was too stubborn to let it affect me. For example, when I went to an interview because I was sure I was able to do what I had applied for, that organization had never worked with a blind person so their apprehensions were genuine. I told the panel, “This is my software. I will show you how I work on my laptop almost the same way as you do. But yes, I might take 20 mins to do what you might do in 10 mins, but once I get to know my job, orient myself to this place, I will be able to manage.” So they took some time to make up their minds. They asked me to come for several rounds of interviews which were acceptable. 

When I started working there, I realized that there were undercurrents about, “Guneet cannot see. Will Guneet be able to do this job or not?” And then going up the hierarchy and getting promoted was also a question mark even though my work was good. My hierarchical growth was slower than my colleagues. 

So these struggles are there but you know what is the advantage of me working in the mainstream? The thousands of people who came in contact with me in the head offices of different organizations and the field, everybody who saw me working – at least they know that a blind person can work at par. Now they will probably tell another 500 people or next time they see a blind person, they will not be as negative as they used to be. So that is a big achievement for me. And that was more important for me than whether I was getting a promotion or not. 

That is such a remarkable thought and achievement both. The impact you’ve created changing people’s perspective by being part of the system and not be outside it. 

Thank you…But we have a long way to go as far as awareness and sensitivity towards people with special needs are called. I hate labelling myself under any circumstances. I just feel that I’m normal. Why should I label myself as specially-abled or disabled? Can’t I just be a so-called normal human being having a limitation? You know I just have a few limitations. So be it. What’s the big deal ya?

Actually, each one of us is specially-abled because each one of us has some or the other limitation. You’ll do something amazing that I cannot. Someone else can do something that you cannot.

Exactly! Now if I can write a word document very nicely and somebody else can do a PowerPoint presentation very nicely so it’s good right? That’s what teamwork is all about.

In fact, a disabled person is not the one who has lost one of his or her faculties but one who does not use his or her abilities – the one who has disabled his abilities. It is important to stop looking at what we can’t do and focus on what we are capable of. And if disabled persons don’t stand up for themselves, how can we expect the non-disabled to push us forward? We only have to generate that awareness and there is nothing like a live experience. 

That’s why I decided I will not use the white cane. Although it’s the best thing for a visually impaired person to become independent, for me, I felt that the moment people see a white cane, they will have so many pitying and negative thoughts about me that that will defect my purpose. So I was most comfortable holding an elbow of somebody and walking in a place I wasn’t oriented about, but no, I wasn’t ready to hold a cane. Also, due to the cane, I would lose my vanity!  (Laughing) 

So, I did a lot of things. I always wanted to be an example to teach or sensitize others. I didn’t want to give them sermons. I was successful sometimes. I was unsuccessful sometimes. But it’s okay. You don’t have to become a topper every time. 

My heart is pounding with awe and pride. What about you? 

Cheers to a woman who in her words lives life with tenacity, resilience, and courage with a dash of humor toasted to hope.

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