I had it probably from birth. It was during my Kindergarten when I still had plenty of vision that I started writing down things wrong from the blackboard and the teacher sent a note to my parents to get my eyes checked. I got diagnosed with Retinitis Pigmentosa at the age of six and I started losing a lot of my vision over time. There were mixed perceptions about me in school and a lot of teachers did not understand what was going on. These experiences made my schooling really hard. I had a tutor for Math and my Mom taught me all the other subjects by reading the textbooks to me. My last years in high school were a struggle when I lost a good chunk of vision. To be honest, I didn’t get a whole lot out of going to school as I felt completely lost half of the time in class. I don’t have a lot of vision now but I have light perception and I can tell light contrast.

My parents knew that I had to do it because there were not a whole lot of opportunities for me in Dubai and in India. So I personally took an interest in going to the US. It was hard and scary but it worked out really good for me. There were things in college in the US which I hadn’t even imagined were available like access to Audio books, a reader and a scribe. I wouldn’t have said that things were perfect but anything I got was more than I ever had. I was still going through the process of accepting and adjusting to the fact that I am going to be blind. I didn’t have a cane and I was good at faking that I could see. When I came to the US my uncle who lives in Philadelphia flew out with me to Utah, met with my adviser, got me settled in, and left after a few days. In the first year of college I lived on campus in the dorms which worked out fine. After that I made friends and we moved off campus and I depended a lot on them initially. I started figuring out the buses to take and learning new skills to navigate on my own. I was forced to do it because I didn’t have much help. My undergraduate years were the transition for me from being very dependent on my parents to depending on friends to starting to do it on my own. I was involved in a lot of activities and groups on campus which made me a little more confident. 

There were a couple of teachers in High School in Dubai, particularly one teacher who taught me Computer Science and who believed in me a lot. He encouraged my parents and me about going to the US. When I graduated I started working as a computer programmer. After about a year into it I knew that this is not what I wanted to do. I started meeting more blind people and got role models who are extremely successful in their field, like attorneys, scientists and people in different high-level positions. This motivated me to do more than I was doing at that point in my life but I wasn’t sure how to do it. I joined an organization called the National Federation of the Blind (NFB) and I began volunteering for it. The people who I met through the NFB mentored me to become more of a leader than a follower. I got involved in disability related legislative process, advocacy and projects. That is how I changed my career and am doing what I do now. A blind attorney, called Ron Gardner, involved me in local work in Utah and taught me how the political system works. I learnt about networking with people through him which was really exciting and interesting. As a computer programmer I transitioned into research in Assistive Technology and developed my capacity in that area. I slowly transitioned from that into the world of policy and advocacy. I learnt about how policy worked in the US and how the Government worked and how you can influence policy and bring some change within the country. Since I was involved in Utah State legislation, and later in Federal legislation, I was appointed to different Committees and Boards. 

It is called rule-making when you write regulations for the Federal Government and its agencies to abide by. The Information Communication Technology (ICT) rule-making sets standards for all IT related procurement and access within the nation and would address anything a public facing entity (like an airport) has to deal with or anything the public has to deal with in accessibility to IT. It is one of the regulations on which I am working and it was a pretty big undertaking. I also work on Medical Diagnostic Equipment, the Affordable Care Act and the public’s Right of Way. We are starting to work on standards to make self-service transaction machines called ATR fully accessible, such as an airport kiosk for check-in or ATM machines or tablets to order and check out food in restaurants. Once a year we try to do out of town visits. This year in May I was in Seattle. We did town hall meetings and public hearings to get people’s feedback. We also met with Microsoft and Amazon about their products and what they have in their pipeline.

I have done consulting with a lot of different countries on policy implementation and to evaluate programs. What I tell people is that one of the biggest barriers that people with disabilities have to face is the attitude of people towards them. The attitude towards a blind person is not to see how they can contribute to society but to either feel sorry or pity for them or be unsure how to include them or try to avoid them completely. This exists everywhere, and even in the US. It is more prevalent in Asian and Middle Eastern countries. A lot of people don’t understand why I need to try to be independent or why I would want to be independent when there are people around to help me out. Changing that attitude is hard. This was the case in the US and still exists here but it is changing. If you go to rural areas in the US it would be slightly different but overall there is some sort of rule and idea of what to expect. That is not the case in India. Even if you want to be independent it is not the easiest thing to be because the infrastructure is still not designed for it. You have to be dependent on other people. I think India is a lot better than some other places where I have been. In some places where I have been in the Middle East or Africa they hide you and don’t want to see you in public. At least in India it is not the case. Depending upon the society and culture there is a drastic difference but it all comes down to the attitude. You can write all the laws or policies of the world to make things successful and make infrastructure but you cannot write any law or policy to change people’s attitudes. It has to come with time and education.

There is no way I could do what I do if I didn’t have all the technology that I use. I use the computer screen text reading software called Jaws on a Windows system and Voiceover on a Mac system. I use an iPhone which has a built-in software that reads everything on the phone for me. I have another software called OpenBook which is connected to a camera on my desk which takes photographs of any print documents that I have and starts reading them to me. On my phone I have a software called KNFB Reader which I use at meetings to read a document which is not in an electronic format. I take photographs of it with my phone and the software immediately converts it to speech and reads it to me. I travel a lot and stay in hotels. I use this software to figure out what a paper which is lying around is about, or to figure out a shampoo bottle from a lotion. I used to have a seeing-eye dog who is now retired. In the last three years I have been travelling with a cane. I chair a lot of Committees and I run a lot of meetings. All my documents and information are in a folder on my computer. I use a little headphone or headset to listen when my computer starts reading to me the information on it while I am at a meeting. I also use electronic Braille.