Interview with Raj Desai, M.D.

Topic: Project Deaf India

Dr. Raj Desai

CAROLYN SMAKA: This is Carolyn Smaka from AudiologyOnline and today I'm speaking with Dr. Raj Desai, founder of Project Deaf India. Dr. Desai, welcome to AudiologyOnline.

DR. RAJ DESAI: Thank you, Carolyn, it's my pleasure to be here.

SMAKA: Dr. Desai, can you please tell me about your background?

DESAI: Yes. I graduated from medical school in India in 1949. I did some postgraduate studies in the field of cancer. And in 1952, I was awarded the first medical Fulbright scholarship to come to America for cancer research and cancer training. And so I came to America from India as a Fulbright scholar. And you won't believe this, but I came by boat.

SMAKA: [laughs]

DESAI: It was a famous boat called Queen Mary, which is coincidentally now parked in Long Beach, California, practically in my backyard! [laughs]

I then came to Boston where I was accepted for further training. I did my three years of training in the field of hematology and oncology, and also struggled and obtained a PhD degree. So I received an MD and Ph.D. from Boston University.

Fulbright fellowship requires that the student goes back to his country and makes use of the training he receives so I went back to India. However, I was overqualified for many positions there, and there was also a lot of nepotism and other political issues in India at that time. So I applied for several positions in the USA and was accepted at Stanford University. After about six years at Stanford, I came to the University of California, Irvine, as the chairman of the Department of Hematology and Oncology, and I have been here since 1964.

SMAKA: And now you are retired?

DESAI: Yes. I retired in 1990. With retirement, I saw two alternatives - play golf or become a beach bum.

But when I retired, with my daughter Anjali as my inspiration, I decided that I should do some work with poor, deaf children in India. As you know, India has one of the highest number of deaf people, children particularly, in the whole world. So I founded Project Deaf India, and I'm very, very happy that after 10 years of working hard, the project is paying off.

SMAKA: You say your daughter was your inspiration - how so?

DESAI: Well, the story is very interesting, and it's still a very emotional story for me. My daughter Anjali is profoundly deaf. She was born deaf during the Rubella pandemic in the 1960s. My wife, during her early pregnancy, became infected with Rubella by a neighbor's child. This was 1964, when there were no computers and no hearing loss early detection methods. So it took a few months before we had it confirmed that yes, she was deaf.

Fortunately, we were living in Orange County, California, near the famous House Ear Clinic in Los Angeles. Dr. Howard House was an internationally renowned otolaryngologist at the clinic, particularly known for diagnosing children with deafness. He also happened to be my neighbor so we developed a good relationship. He confirmed my daughter's diagnosis of deafness.

At that time, I had advertised in a local newspaper in order to make contact with other parents of deaf children. And it ended up that we got about 30 parents together and started a deaf school, as none existed in Orange County at that time. And we named it Taft, after a local politician, and the school still exists today.

After founding the school, the next step was deciding what teaching methods would be used. There were two methods in those days - the oral method, which does not allow sign language, and Total Communication, that includes American Sign Language, lip reading, and speech training. The Taft school started using Total Communication from the beginning.

There were no teachers available in my area so we contacted Gallaudet University. We connected with a husband and wife team, Dr. and Mrs. Holcomb, who eventually decided to come and help us establish the school. We were provided a couple of rooms in a regular, existing school and were lucky enough to find other teachers who were agreeable to our method of teaching.

SMAKA: And Anjali eventually graduated from this school?

DESAI: Yes, and she applied to Gallaudet University. As you know, it's a very competitive school as they obtain applications from students all over the world. She obtained a master's degree from Gallaudet, and met her husband there who was also a student and is also deaf. They now have two children who were born with normal hearing. The children are now bilingual as they speak English and are also fluent in American Sign Language (ASL).

Bringing up a deaf child has been a challenging and stimulating experience, and it's something that I write and lecture about now. So you can see from my experience how I came to be inspired to start Project Deaf India.



Dr. Desai's daughter, Anjali, was his inspiration for Project Deaf India

SMAKA: So Project Deaf India was your second career, in a way?

DESAI: Yes. One of the first things necessary with such a project was to obtain funding. So, I looked to the Rotary Club. Rotary International provides grants when Rotarians from around the world join hands together for worthwhile projects. So as a Rotary member in the U.S., I made contact with Rotarians in India in order to apply for grant money.

Interestingly, at the same time, a Rotarian friend of mine sent me an article published in an Indian newspaper about two villages of the deaf in India. These two distant, remote, agricultural villages had approximately 20 to 30 percent of deaf people out of a population of about 500 people.

Even as a doctor, I couldn't believe why there should be about 30 percent deaf out of 500 in this distant village in India. Sure, we all know that India has poverty, India has hygiene and sanitation problems, but all of this couldn't seem to account for 30 percent deafness.

So, I took over the challenge of the project. I got help from the National Institute of Health, and cooperation from the Indian Institute of Medical Sciences in Delhi. And we all went to the villages to investigate.

Despite all the obstacles - no electricity, no running water, no paved roads to these remote villages - we went to the villages and investigated. We made a video entitled "Silent Village" that got a lot of attention, both from Rotary, who did an article on it for a Rotary publication that is distributed throughout the world, and from others. So, that's how Project India started.

SMAKA: I know there's a link to the Silent Village film on your Web site, www.projectdeafindia.org. How do the people in these silent villages communicate?

DESAI: I'm very glad you asked that question. Sign language is different around the world - there's Japanese sign language, Chinese sign language. French Sign Language, American Sign Language and so forth.

India is a challenge because it has 38 languages recognized by the government in the whole country. They are totally different languages. If you live in the south, you don't understand the language of the north and vice versa. At the present time, most deaf people in India now use a combination of body language and a type of sign language combined together.

So, for the past ten years, a colleague of mine has been working on making a common sign language based on Hindi. The purpose of my deciding to use Hindi as the basis for a common sign language was very simple. India has the largest film industry in the world, producing about 1000 to 2000 films every year. Everybody loves these extremely popular films - it is the most common form of entertainment. If all people understand Hindi in movies, why shouldn't they speak Hindi in sign language?

This is a very large project of an institution in Mumbai, where they have got a Sign Language department working on developing this one common sign language. I'm confident that within the next five years, there will be a common sign language in India.



SMAKA: Regarding Project Deaf India, what were your initial goals in starting the project?

DESAI: Of course, I had to do a lot of thinking about this. I eventually decided on two distinct goals.

The first goal was early detection of deafness and intervention. This is what is now common practice in the UK and US. Any child that is born in a hospital or any birthing center is tested for deafness, everywhere in the United States. As you know, there is portable equipment that is used to screen babies for hearing loss costs about $5000 or so and the results are very accurate.

Of course follow-up, such as with intervention and amplification, is also critical. In India, many children are born with hearing loss that is medically treatable, so in a matter of a few months, many children can be helped just with intervention or surgery.

In the US, many children who are identified at birth are fit with hearing aids by age 1 - 2 months. This is very important for the development of speech, language and cognition and is of course the long term goal in India as well.

But my second immediate goal with Project Deaf India was to decrease the large incidence of deafness. India has a National Vaccination Plan but it does not include measles and rubella vaccination. When they are included, it will decrease deafness and also blindness drastically in India.

In 2007, I was fortunate enough to meet the president of India, Professor Abdul Kalam. This man was not your typical politician, but he was really a scientist. After our meeting, in which we discussed deafness in India including the subject of vaccinations, I did not hear from him for about nine months. So I thought, "Well, my words fell on deaf ears, as usual."

SMAKA: And did they?

DESAI: While I was thinking that they did, I heard from a fellow Rotarian in India who told me, "You know, your projects are going very well." And I could hardly believe it. So I approached the chief of the India Health Ministry, and she confirmed it. "Yes", she said, "We have started a program called "Prevention and early detection of deafness in India".

One major obstacle to the goal of early detection and intervention was that there were no trained audiologists in India. There are only 1000 audiologists in the whole country of one billion people. Neither is there ENT (ear, nose and throat) doctors to detect deafness accurately. So this program that has been started, at the cost of approximately $700 million, will train enough ENT doctors and audiologists by 2010, which is just around the corner from now.

Dr. Dave Citron, an audiologist from Boston, and his team were instrumental in beginning the organized process of implementing a newborn hearing screening and follow-up program. He worked through Rotary, and I know you interviewed him about his project (www.audiologyonline.com/interview/interview_detail.asp?interview_id=496).

All of this represents great progress, and by the same token a great challenge toward the goal of early detection and intervention.



Mother and baby waiting for newborn hearing screening, which was recently implemented in a Goa, India hospital

SMAKA: What kind of progress has been made regarding reducing the incidence of deafness?

DESAI: Regarding vaccinations for prevention of deafness, there was an important meeting that was held a few months ago by the Measles Initiative in New York. The Measles Initiative is a partnership committed to reducing measles death globally, led by the American Red Cross, the United Nationals Foundation, the Centers for Disease Control and Prevention, UNICEF, the World Health Organization, the Bill & Melinda Gates Foundation, and other key partners. Many world leaders attended this meeting as well. This organization has made wonderful progress toward my second goal. It is planned that India should have national vaccinations including measles and rubella by the year 2010, or 2011 at the latest. But this has to be annual vaccinations. You just can't vaccinate one year and then give it up, because you've got to include new children being born.

So obviously there is so much progress toward both of these goals, and I'm very, very happy.

A third goal that I have, which has not yet been achieved, is regarding the majority of deaf people in India who are struggling to make a life for themselves. Either they are begging on the street or they are doing menial jobs.

When I met with the president, one of the things we discussed was the education of the deaf in India. Most of the deaf people have no money to travel yet India has more than 1,000 technological institutes. The deaf should be allowed free education at the technological institutes. In every part of India they should allow 20 or 30 deaf students or more, free education in technology. That is, computer education, repairing of automobile industry, and other kinds of technical education.

Here in the U.S. we have a National Technological Institute for the Deaf in Rochester. In addition to Gallaudet University, which gives grants bachelor's, master's degree, and PhD degrees, as well as provides technical education, NTID in Rochester provides technical education to the deaf.

I would like to see similar institutions established in India. Because of the economic conditions in India, they should also allow several deaf students a free education, so they can be trained and make a living for themselves.

Now, I'm going to start with pressing the situation of deaf education, provided my aging bones allow me to continue travelling back and forth to India. I have been back and forth every year since I started the project. But, it is not easy now as I am 85 years old.

SMAKA: Before we finish up today, I just want to mention how inspiring the Web site is, www.projectdeafindia.org and direct our readers to take a moment to check it out.

DESAI: Our Web site has been provided by a teacher of Anjali named Susan Wecht. She started it for us in 1998 and we've been so fortunate to have her, both in the education of our daughter as well establishing the Web site. A fellow Rotarian who is also a computer whiz maintains the Web site for us.

Carolyn, I try to use whatever God has provided me to achieve my goals, especially for the deaf in India, where poverty is so extreme. And I've been very lucky to connect with the right people at the right time. People like Susan, David Citron, my fellow Rotarians and too many others to name. Family and friends have been instrumental in the success we've achieved so far. Our network of friends includes people in CDC, WHO, UNICEF, and other governmental agencies here and in India. Without them, we could never have made this kind of progress.

SMAKA: Dr. Desai, I can't tell you what a pleasure it has been speaking with you today.

DESAI: Thank you, Carolyn, for your interest in Project Deaf India.