Guest author, Divya Goel, shares her journey to self-advocacy and living her dreams as a young woman with Usher syndrome.
The Hindu God Krishna makes clear in the Bhagvad Gita, the Hindu Holy Book, that Hindu peoples are not to talk about themselves in the first person as such self-reference is an example of ego. Divya will therefore refer to herself only in the third person. This excerpt and a link to her full story are being posted on Lane of Inquiry with Divya’s permission.
Divya Goel was born in 1986 in Ontario, Canada. When Divya was about three years old, she flew with her family to India for a vacation where, in an awful and shocking turn of events, Divya developed a high fever. During this illness Divya lost most of her hearing and slowly her vision. The doctors in India did not know what caused the fever. Divya and her family flew back to Canada and the doctors in Canada found that Divya had Usher Syndrome Type 1. Communication with her family and hearing friends became very difficult for Divya. She and her family relied mainly on gestures and body language to communicate with each other.
Divya became a student at Metro Toronto School for the Deaf (MTSD) in Toronto, Ontario in early 1990. At first, Divya did not know anything about Deaf people and did not know sign language. She learned both Canadian and American Sign Language when she was seven years old. She was aided by an “intervenor” who provided 1:1 support for learning sign language and navigating her environment.
Communication improved but continued to be challenging. Some close family members knew Canadian or American Sign Language, Signed English, and some Indian signs. With other family members and friends Divya had to write back and forth on paper. This manner of communication continues to this day.
Divya was the only DeafBlind student at MTSD. She was still emotionally traumatized by the loss of both hearing and vision and was not familiar with DeafBlind culture. However, she enjoyed learning sign language and how to communicate with deaf classmates. She started participating in different events, such as Indian fashion shows, plays, performances, and many other activities.
A Move to America
In early 1998, Divya and her family moved to the United States to start a new life. She became a student at Gotha Middle School in Orlando, Florida, a public school that had a small Deaf Program. Gotha Middle School was very different from MTSD. Divya was not satisfied with the Gotha Deaf Program because the education was not comparable to standard education.
In late 1999, Divya transferred to the Florida School for the Deaf and Blind (FSDB) in St. Augustine, Florida. There she had experiences that impacted her life in both positive and negative ways. She encountered significant challenges as she was the only DeafBlind student and neither the staff in the Deaf or Blind department had experience meeting the needs of a student with both hearing and vision loss. In addition, there were no legal mandate that a DeafBlind student receive a standard education. Divya was placed with the Special Diploma/Vocational group of 2005. Divya felt frustrated, angry, and upset.
Despite this, one of the most treasured memories of Divya’s life was from 2003 to 2005 when Divya participated in the Miss Florida School for the Deaf Beauty Pageant. In 2003 and 2004, Divya performed an Indian dance of Bollywood songs and won the Talent Contest. In 2005 when she was a senior, she was crowned Miss FSDB Queen. This was the first time in FSDB history that a DeafBlind student was crowned queen. At the time, Divya felt, “The dream I have had for a long time has come true, that if I persist and do not give up I will succeed. I truly believe that when my own dreams come true, I can inspire others to believe that they can do it just as I have. That light of hope shines brightly in my heart.”
One of the other treasured memories was when, during her senior year, FSDB took one hundred fifty students from both the Deaf and the Blind departments to the Super Bowl XXXIX in half-time performance to sign America the Beautiful.
Divya graduated with a Special Diploma in 2005 and then had an unhappy experience. Divya had to return to the FSDB post-graduate program to complete some classes in the Blind Department. However, that program did not offer the classes she was promised and the staff did not follow her Individualized Education Plan (IEP). For four months, Divya received no academic education. Divya made a decision to advocate for herself. Divya insisted that education was very important to her as it would enable her to embrace future challenges and to become a successful student. Looking back on that event, Divya realized that that was the first time she truly advocated for herself. That experience enabled her to advocate regarding other issues that affected both her life and the lives of other DeafBlind people.
In 2006, Divya elected to transfer to William R. Boone High School in Orlando, FL. Boone developed a new IEP for Divya that included her educational goals, challenges, and the equipment she would need to access materials despite her vision loss. Divya graduated from Boone with a standard high school diploma in the summer of 2008.
In spring 2009, Divya entered Valencia Community College in Orlando. At first Divya was very overwhelmed by the college experience. However, many wonderful people guided her to choose a major that would enable her to pursue the career she wanted. At one time Divya wanted to be a co-owner of her family’s Indian restaurant business.
Later that year, Divya had the unique honor to be selected one of six DeafBlind leaders of the DeafBlind Youth Adults in Action (DBYAA). (The name was later changed to DeafBlind Citizens in Action (DBCA).) DBYAA included two representatives from Florida and one each from Wisconsin, Texas, California, and Georgia. They went to Washington DC to convince the legislature to pass laws that would improve the lives of the DeafBlind community. On June 26, the group met the first African American President of United States, Barack Obama. In the Oval Office, Divya stood next to President Obama while he congratulated DBYAA for being the first DeafBlind organization in history to meet the President. When he finished his speech Divya gave President Obama a big hug. She saw him as an excellent example of someone who became a leader by overcoming many difficult challenges.
Divya's story is a summary of her work experiences and of how her career choice changed from wanting to be a co-owner of her family’s Indian restaurant to working with the DeafBlind community. Divya made this decision after meeting President Obama.
At first Divya participated in DeafBlind workshops, conferences, and events as a student. She then became a mentor at the Southeast Transition Institute Retreat, Deaf Blind Youth Adults in Action, Helen Keller National Center two-week Summer program, and other organizations. She also became committee co-chairperson of the American Association for DeafBlind’s Symposium for young adults in Kentucky. She transitioned to the level of facilitator at the Helen Keller National Center two-week summer program.
In the future, Divya would like to offer tips to help people understand the importance of life. She wants to encourage people to get involved in societies, to have an active life, and to be successful in school, at work, and in their future lives. She wants to inspire people to face challenges by having determination and by striving to achieve goals no matter how long it takes. Remember that, it is alright to fail as long as one tries hard to succeed. We learn from our mistakes.
Divya believes that a person has to have clear and concrete goals with a plan to reach them in order to have success. In addition, one must be persistent and not give up too easily if there are obstacles to reaching the final goal.
After Divya graduates with a university degree, she hopes that she will have many opportunities to travel and share her life experiences, to show that she knows who she is despite having faced many barriers. She wants the opportunity to talk to international leaders about her experiences as a DeafBlind person. She wants to help improve the political system to assist people with disabilities nationally and internationally.
Life action has guided her to succeed and to and improve her life. She looks forward to her never-ending journey of success.
Divya’s advice to people who are DeafBlind:
If you follow your dreams step by step you will make it no matter how long it takes! Just be patient and stay positive. When the time is right you will step into a new chapter of your life; you will learn from new experiences and embrace new challenges.
Divya’s advice for the parents of children with hearing and vision losses to help them succeed in their academic education:
Parents, it does not only have to be focus on education, the children can have fun activities to help balance both fun and education to develop different abilities, skills, and gain the new knowledge that your children deserve and experience the unique opportunities around the world. It is always a possibility to explore new options: if one thing did not succeed for you or your children, you can try again with the school facility and others to get the best access.
Divya Goel is Vice President of DeafBlind Citizens in Action as well as a mentor and facilitator at the Southeast Region Transition Institute and the Helen Keller National Center. Divya has a rare Type 3 HARS Usher syndrome. She holds an Associates Degree in Arts from Valencia Community College.
Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.