Shownotes: 

What do people think of as they are coming to the end of their college/University degree? The future, a new life, new job, new friends, travel, and new adventures. And most people step into this beautiful but messy world full of hopes and dreams.  

My guest this week on The Elephant in the Room podcast Ruchika Singh, had to press pause on the life she was looking forward to when she fell ill suddenly during exams in the last year of her engineering degree. Life ground to a halt as she was diagnosed with CNS Tuberculosis Meningitis. It meant fighting to survive and catastrophically losing vision as a side effect. The road to recovery has been a nearly decade long uphill battle and the social stigma and pressure has delayed her entry back into the life she dreamt for herself.

In spite of having one the highest percentage of people with visual impairment in the world - India is woefully ill prepared with the requisite training, support, job opportunities, networks, infrastructure, accessibility to enable people to live a normal life - a life that most of us take for granted. There are systemic barriers to inclusion for people with disability, including lack of knowledge about visual impairment and outdated attitudes/perceptions amongst most people and potential employers. 

Stigma around any form of disability means millions of Indians are hidden, have no voice, no power and no decision making authority. Other people decide for them, choose for them, what they can or cannot do, about their passions and abilities - they are robbed of their identity. The struggle is everyday, to compromise on what you believe you can do and the reality of what you are able to do. Ruchika has not given up her ambition to have a fulfilling career. Like she says, ‘In another life. I may have joined some tech firm after completing my engineering. I deserve an opportunity to have a career and a fulfilling life.’

Ever the optimist - she is dismayed by the lack of support from corporate India. Her attempt at employment in the behemoth that is the Indian tech Industry has been deeply demotivating and demoralising. - lack of response, zero engagement and an attempt to obfuscate on what disability actually means for the companies. She has a question for global and Indian tech companies - why talk about inclusion when you are not inclusive. And what use is technology innovation when it cannot enable her to live a better quality of life.  

Every person deserves to be able to live life to their fullest potential - what can we do to make the world more inclusive for people who do not conform to what is considered the norm. I know Ruchika is brilliant, smart, intelligent, well read, ambitious - her visual impairment should not become a barrier to living the life she wants. And I am here ask - @Google, Facebook, Microsoft, Infosys, HCL, IBM, Dell, CISCO, TCS, Accenture, Wipro - what does inclusion mean to you?? It is time to show up and be counted - move beyond the tick-box.

“I am going to keep trying on every day to live the life which I wanted to and which I deserve to. And you know, I'm not my disability, I'm smart, intelligent, and capable”

Full disclosure - I know Ruchika since she was a child (she is a part of my extended family

Memorable passages from the episode:

👉🏾 Thank you. Thanks a lot for inviting me 

👉🏾 Let me tell you about Ruchika. I was a very normal girl, who loved dancing, singing, styling, reading. And hailed from a tier 2 city of India. I also followed a very normal and very standard career path, as many youngster in India, choosing science as a mainstream and then opting for engineering. Everything was very normal until in final year of my engineering, my life took a sudden turn and I got diagnosed with, you know, CNS TB, Central Nervous System, Tuberculosis Meningitis in December 2012. I had to drop out of college and I was in treatment for several years and in the process I lost my eyesight. It was a difficult moment for me, but the setback had made me more stronger and even more determined. I always work harder each and every day, to reshape and reclaim my life again, with whatever capabilities I have. I can say that I am going to keep trying on every day to live the life which I wanted to and which I deserve to. 

👉🏾 Absolutely yes. In fact, I feel privileged because you know, it's not just me, I'm talking on behalf of the millions of people out there, not only in India, you know, still facing the same situation probably. Not everyone get a platform to speak and voice their story. So I really want to take this conversation ahead.

👉🏾 I'll say, the impact was very heavy initially. For the initial few years, it was really very difficult for me to digest the fact that I'm having optic atrophy, in which optic nerves got damage, which results in loss of eyesight. But for four to five years, me and my family, we kept traveling to different places, contacted different doctors you know for the treatments. But there is nothing, no medications, no cure. Even though we tried outside the India, through our relatives and friends, but the situation was similar everywhere. Then we came to know that it's still an area of research.

👉🏾 It's very difficult moment for my family also. But all these hardship, it doesn't go all in vain. Instead the situation had made me more stronger. Instead of thinking of what I lost, I try to feel grateful that what I have. That I'm alive. That's a big thing and I fought against a very rare and a chronic disease. And I'm still with my family, my loved ones, and I still can do many things. You know, all the hardship of my mother, my loved one, they always gave me, enough courage to always have a positive outlook and to be the source of happiness to others.

👉🏾 There is a long list, but yeah, I'll mention some of them. So I first start with my area of interest, choosing clothes is really a very huge challenge for me, because previously it was very easy, you just see and pick up whichever you want. But now the situation is not the same, not only purchasing but even buying different items, these are really a big challenge for me. And because it's what you have to do on each and every day on your day to day life, and there you are going to face this situation. Second, if I say like stepping out on my own, it's really an absolutely no, because now if I want to go outside, I really need a help from other to be with me to hold my hands when I have to go outside. So it's also not at all possible.

👉🏾 Next I'll mention about the mobile phones, the use of mobile phones. You know, mobile phones, nowaday is a part of our life, a very important part, I must say. But for me, I can't use all the features in the mobile phones, even though there is a virtual assistant available but with that also, you are not going to use each and every features of your phone. If you'll start once you are going to get stuck at one place and there you again need help from others. So it's not very smooth. As I previously mentioned about reading, that I like reading. So now I tried reading, but that's also not possible because the situation and the condition has been changed. And even though I tried using screen reader, but I didn't find them very smooth because they can't move ahead. And you know, with all these things I mentioned one very important thing, is that getting job. It's a very, very, very big challenge for me till now because I'm still trying for that and it's not possible.

👉🏾 And after that, you know, keeping myself updated with whatever is going around me, because for me now, source of information is limited. With that solely I have to get all the informations. It's not very easy form me. Previously, you know, I just pick up the newspaper, go through the headlines and then you came to know whatever is going there, but now it's not the same thing.

👉🏾 And I must say that if you are not careful, there is a bit of challenge. And like all these things, there is a long list ahead and I can't mention each and everything because from morning to night, there is challenge. 

👉🏾 For this answer. You know, in physics we learn that energy is a conserved quantity, it cannot be created or destroyed. If you see world around, you know, everybody has their own suffering, but trust me, no one is comparable. Likewise, when I look at my mother, she face a lot in her life at different stages. Still she keeps smiling. So, you know, for me, she is the source of positivity.

👉🏾 And after that, when I see my husband, he has been waiting to marry me since from her eight years, so for me, he is a source of patience. After that, when I look after my brother he doesn't think before helping anyone, So for me he is a source of kindness and forgiveness. So likewise you know, I don't have to look far around for having any sources rather I had it around. People around me, my loved one, always believed in me, that's why I decided first I should believe in myself. So I think you should first love yourself then really life will become a very beautiful place to live. 

👉🏾 It's nothing very different to youngster of my age. I'm a very simple girl, you know, I'll find happiness in very small things, like getting gifts, hanging out with friends, just all these things really make me very happy. And I must make a point over here that, in my final year of engineering, I was preparing for India airforce. But all of this just stuck at the mid st because I fell ill. Now, you know I always hope for getting a good job, a good life, but these things all have been halted. But I must say that I'm not sure that any aspiration is big or small. I think it depends upon us, how we think of it.

👉🏾 See things changed a lot. I've not used any fancy words over here. It's a true thing. Like everything around me has changed. I lost my friends, I lost networks, contacts, everything. Maybe because few of them, they thought there is nothing to gain here. Or maybe some of them they lose hope very earlier. But, you know getting gifts and hanging out, everything has been changed, nothing is the same now. I am the same or the similar Ruchika, but yeah, it's another thing that now I can't fly a plane, but still, I am hoping for getting a good job and leading a good life. It's not impossible, but I'm sure that I'm having a struggle ahead.

👉🏾 I must think about a word which will express my feelings. I think unfortunate/ disappointing are correct words. If you'll check the sent items of my email, there is lots of application sent to different organisations for different roles, but there is nothing in my inbox. Even though some of the MNC had scheduled interview, but when I went through the interviewer, I always have to face rejection or sometime vacancies are not open.

👉🏾 So I'm very surprised that, you know, in this fast moving technology world, still we are not able, to hire and to have people like me in the workforces. Do we still not have appropriate system, appropriate process to hire the people? I'm always thinking like where is the technology to support me. We're always discussing that we are a developed nation and all, but if it is true, then I should not be here. And you know, I'm speaking about myself, So I must say, I'm not sure that it's the condition because I'm in India or is it the condition all over the world. 

👉🏾 Yeah, I have. 

👉🏾 No in the interview process. You know whenever I used to offer the interviews, there I'm always talking in the category of you know disabled candidates. But when the final round used to come along, at that time, I have to face that we are looking for some better candidates or sometime I'm not going to get any replies. 

👉🏾 I think I've already overcome the biggest challenge that was to survive, to live the precious life, which God has gifted to us is not a small thing. But sometime we forget to appreciate it. And you know, there is a saying that we don't know the value of our position until we have the fear to lose it. And I must say that I know the value now. 

👉🏾 Similarly, you know, is a condition with my eyesight there are lots of things which is very obvious for other people, and it's very easy for them to do. But it's not the same thing for me, but not everyone understand it. And I'm not blaming them as well because they haven't been in my shoes, nor I want anyone to face the situation, which I had faced at a young age. But you know acceptance is the biggest challenge because I've seen people being uncomfortable talking about me just because they don't want to accept me how I am. And sometime people want to ignore it or hide it. I'm just not talking this thing at a professional level only, or at a personal level only.

👉🏾 While I know that companies have to make their profits, they have to expand their thinking on how can they be inclusive. Don't you think that there is immense potential in, you know, each and every person. But I believe that each and every person is unique in their own way, we have to always, you know, be ready to accept those people. 

👉🏾 At start, you know, we are having male dominating workforce, but then we paved the way for the female contribution, and I must say, it's still work in progress. And it's very normal and very common to many places now and has became norms to many organisations. The same thing, you know, have to do with the people like me, I think organisation need to make a space for people like us. And you know, they have to prepare to engage all talents. 

👉🏾 And you know, I'm not my disability, I'm smart, intelligent, and capable. In another life. I must have joined some tech firm after completing my engineering. I deserve an opportunity to have a career and have a fulfilling life. And I must say that to just give a tag to the person who are facing some issue as special person, it will not make them feel happy. You should always make them feel a common and a normal people. This feeling will make them very happy as compared to just giving them their tag of, yeah, special candidates. Because I am facing the situation, that's why I'm telling these things. 

👉🏾 And I also wanna say that making diversity inclusion, just a rule is not a good thing. It should not always something to talk, but it should be implemented. And might be it's just a word for you, but it's hope for others, for their future. You must think in this direction, it's very necessary because people who are facing some sort of issues are, a huge section of our society. You can't ignore them and move forward in your life.

👉🏾 Thank you. Thanks a lot Sudha.

Get in touch with Richa:

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