Interview by Pramila Komanduri
Sachin Dev Pavithran was born in India but grew up in Dubai where his father was working. He later went to the US for his undergraduate studies in the state of Utah. When he began his career as a computer programmer in the US he had no idea that one day he would be involved in the field of disability policy making and advocacy. He was appointed in 2012 by President Barack Obama to the United States Access Board which is a federal agency that oversees accessibility for people with disabilities. He was Chairman of the Access Board in 2015-16. He is concurrently working as the Program Director of the Utah Assistive Technology Program (UATP) and the Disability Policy Analyst for the Center for Persons with Disabilities.
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.
I have always had a strong interest in Computer Science. My undergraduate degree is in Information Systems with an emphasis on Computer Science. I have a second degree in Marketing. I studied for both undergraduate degrees simultaneously.
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.
My parents put me in a class for karate and I enjoyed doing it. I am still involved in a lot of outdoor activities and I go to the gym. Utah is an outdoors place. I do hiking, camping, rock-climbing and a lot of biking on the tandem bike. A year and a half ago I did one of the longest one-day bike races in the US called the LOTOJA which starts from Logan in Utah and ends in Jackson Hole in Wyoming. It is 206 miles long. It takes a lot of training and it is not something you can do overnight. My friend, who is in the Utah State Legislature, and I train for it and race it together. It is one of the biggest races in the US and close to 3600 to 3700 bikers come to this race. On the day that I raced it barely 1500 people finished it and I was one of them.
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.
I got a call from the White House saying that my name came highly recommended for this position. I was interested in it and they started my vetting process which lasted for about 7 to 8 months. When the 2012 Presidential election was over I got a call from the White House saying that President Obama wanted to confirm me. This is a political appointment and it is over when my term ends in 2016. From the time I got involved in policy work to the time that I got appointed to the Access Board I was in a lot of different Committees and my head was spinning with the amount of information coming at me. It is not something you can say you are prepared to do but you learn a lot of it on the job. Over the years I have had a good handle on how policy works and I have a good technical background on different policies. I now had to learn the procedures.
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.
Writing standards for the rules for the self-service transaction machines are very blind-specific. They have other points to them but they are going to have a significant impact on the blind population which usually gets left out. The industry itself is starting to step up and get ahead of the curve but we still have a long way to go. Once this rule is passed and becomes final the industry will have no choice but to abide by it. It is hard to put a timeline on when it will be passed as the Federal government moves really slowly. With 2016 being an election year things are even slower.
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.
I have done more in other countries in the past than I have done in India. I was on vacation last December in India and I gave a talk at the University of Kerala in Trivandrum. I spoke to the Faculty and I met the Chief Minister of Kerala and a few other Ministers and also met with the Collector of the town where I lived there. I had lengthy discussions about accessibility issues and I learnt about some things on which they are working.
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.
The first thing I would say is to stop feeling sorry for yourself and feeling like a victim. You need to get over the grieving process and figure out what you can do for yourself. In every country it is going to be different. I am no expert on how certain things might work in India but the philosophy is going to be the same everywhere. Try to find resources or try to get networked into the blind community and find out how other people in the same situation had overcome their obstacles and use that knowledge to make it work for you. It is going to be extremely frustrating and hard but if you don’t do anything about it nothing is going to happen. We all have different experiences and different circumstances but I think everyone has a choice to do something about it or not do something about it.