Mani was born and raised in Bombay, India. At age 4, his first grade teacher personally came home to tell his parents that Mani had difficulty hearing in the classroom. His parents had not noticed this because the family spoke loudly for the benefit of his sister who had Usher Syndrome. Ushers is often consistent among families.
His family was not in a financial position to pay for audiology exams or hearing aids for their children. By age 12, Mani experienced night blindness and became dependent on using sighted guide during evening hours. Since the government or schools in India did not offer any kind of assistive devices or services, Mani persevered and managed to lip read all the way through graduate school! He was Class Valedictorian in high school and was first in his class from the University of Bombay, where he earned a Master’s Degree in Computer Science.
In 1984, when Mani came to the U.S. to work on a software project, his project manager insisted he get hearing aids because of his difficulty communicating. Much to Mani’s delight, the world opened up at the age of 24! He could now hear the birds chirping, people chatting and the less delightful…traffic. Unfortunately, Mani was experiencing gradual vision loss. He was living in New Jersey at the time and was having difficulty traveling to and from work without assistance from his friends.
In 1994, Mani, his wife and family moved to Boston, where public transportation was readily available. After becoming registered with the Massachusetts Commission for the Blind (MCB), he received orientation and mobility (O&M) services from MCB. He is a long cane user.
Mani has received mobility training at workplaces as well. He has also had ergonomic evaluations and recommendations assisting him throughout his professional career as a software engineer. Sometime around 2006, he began getting software related assistance and training using Zoom Text. For computer related activities, he uses a screen reader (Voiceover) on his Mac, the iPhone 5 for mobile communication and has a CCTV at home. Mani has worked as a software engineer for 30 years in various fields such as banking, mutual funds, police and fire, paperless billing and website development. The last two places of employment in this field were at Oracle and Mathworks as a senior software engineer and team leader.
More recently, he created the Usher Registry website which comprises more than 500 registrants with various types of Usher Syndrome from 30 countries! He volunteers for the Usher Syndrome Coalition, a nonprofit organization. The progression of his Usher Syndrome has prompted Mani to change direction in his life and navigate toward other dreams and ambitions; one of which is in creative writing. In 2009, Mani was the first recipient of the Maggie King Award, presented to him at the Massachusetts State House, in recognition of people with deaf-blindness who have made a difference when faced with adversity. A photo of Mani receiving this award is displayed at MCB’s Boston office on the wall along Washington Street.
In 2013, he won a Fellowship from the National Endowment of Art (NEA) for a one-month poetry residency at the Vermont Studio Center in Johnson, Vermont. It is the first time the school had a person attend with Deaf-blindness. There was a collaboration with MCB’s Director of Orientation & Mobility Meg Robertson and the Vermont Association for the Blind (VAB) to coordinate mobility training as well as the school’s proactive approach for other accommodations.
MCB provided the funding to the VAB, who assisted with the orientation and mobility instruction. In July 2014, he was selected as one of the winners at the 24th A.D.A. anniversary Poetry Slam Competition. Mani recited a couple of his poems by memory. The fellowship in Vermont was a wonderful experience for Mani and has inspired him to further his education. Currently, he is enrolled in the Master of Fine Arts program in the poetry genre at Lesley University in Cambridge, Massachusetts.
For school, he is using the iPad, the VR Stream, the Docuscan with the scanner to help him. For hearing, he uses the M-DEX, and TzV_DEX pair with his Widex hearing aids. These help him to hear the computer audio as clearly as possible. All of this was provided through MCB’s Deaf-Blind Extended Supports unit. Training and assessments were provided through MCB’s Assistive Technology department. Mani is a charming, delightful and remarkable individual who continues to excel. His counselor states that it is a pleasure to work with Mani as he is a very inspirational man with deaf blindness.
With Mani’s permission, below is one of his poems.
It was a beautiful, bright day
the sun had come out to play
with my crippled eyes,
tricking me into a panoply
of blur, intense and perhaps empty.
I am focusing hard, on a fuzzy black
worn by you sitting across me, amid
voices, Amharic, English and French.
Was it a hat?
The sort seen only in a millinery?
When I boldly ventured the form
to be a tall, stylish hat
you jumped up and down excitedly
announcing the world around us,
he can see my hat
he can see my hat.
This is how we met and before long,
floated on a cloud above the throng
to Quebec, your home
the many countries you visited
the exotic bazaars you shopped
your nearly hairless head, upon which
you guided my tentative fingers
to let me know.
A year later, when you were waiting out
your life, refusing to be seen,
I badly wanted to see you
to confide in you
that on sunless days,
I can see a lot more.
This poem is dedicated to the memory of Thérése.
This information is provided by the Massachusetts Commission for the Blind.