I was born three months premature in Soviet Russia. I was adopted at age three to a multilingual and musical family in Washington, DC. This environment allowed me to develop a strong ear; I began playing music at age six and had eight languages under my belt by age 18. I spent my weekends and summers interpreting Spanish/Russian for an adoption agency and translating data from Persian for an Iranian Human Rights Foundation. I also played in several jazz bands and composed my own music.
My exceptional hearing served as both the vehicle for my passions and an excellent mask: my ocular conditions were only discovered when I switched schools and failed a required vision screening at age 12. I had been legally blind the whole time. While surgery and other treatments restored my ocular acuity, my brain was another story. I struggled to interpret the cacophony of incoming visual data — a condition that is now known as Cerebral Visual Impairment (CVI). Throughout middle and high school, I straddled an undefined in-between. I was no longer considered legally blind within the parameters of a purely ocular-based definition — rendering me ineligible for formal accommodations — yet, was also unable to keep up visually, even with four vision therapy sessions per week. Additionally, I sustained further brain injuries from pseudo-medical torture and extreme abuse. I miraculously survived many brushes with death but was left with a much more severe CVI.
It became clear that learning non-visual techniques was a must. The silver lining in these harrowing circumstances was that I was finally eligible for services. I immediately signed up with Vocational Rehab, in the state I lived in at the time. The service providers were overwhelmed and stumped by the complexity of my additional disabilities. I was told, “just stay home”, then left to fall through the cracks. I took matters into my own hands and taught myself Braille by ordering books through the National Library Service. Soon thereafter, I met a completely DeafBlind man who not only taught me practical blindness skills, but also introduced me to Tactile American Sign Language and a whole network of DeafBlind people. I became immersed in the DeafBlind community and fell in love with the vibrant culture.
The combination of my ASL immersion and fervor for interpreting brought my future goal into clear focus: I wanted to become an ASL interpreter and work with the DeafBlind community. I applied to Gallaudet University, a school for Deaf and Hard-of-Hearing students that offers all instruction in ASL and admits 5% hearing undergraduate students. I was nervous I might not be accepted, as the first Blind student to apply to the Interpreting program. It turns out my admissions evaluator had paved a similar path himself, as one of the first Deaf interpreters who had also chosen to specialize in DeafBlind interpreting. I attended classes through the use of Deaf tactile interpreters and learned a great deal from them about the ins and outs of interpreting.
During my interpreting internship, I met Brandon Cox, currently the LightHouse Senior Director of Operations. Brandon wholeheartedly believed in my potential when few others did. He not only ensured that I would have ample opportunities to interpret, but also exposed me to an ongoing stream of various assistive technologies and equipment. I was allowed to bring home any device and play around with it until I felt confident using it. He then offered me a job as an assistive technology instructor. As part of that job, I was invited to a training in San Francisco, and I immediately resonated with the Bay Area.
I was very drawn to the LightHouse because of the excellent feedback I heard from many DeafBlind and Blind friends, including former LightHouse clients and former Holman Prizewinner, Conchita Hernandez. Additionally, I was very impressed that the LightHouse’s CEO, Bryan Bashin, is Blind, and that over 50% of the staff, including in leadership, are Blind or Low Vision. While I believe that both Blind and sighted individuals can be excellent blindness professionals, I also believe that structurally, organizations serving Blind people should have a majority of Blind staff at all levels. Based on my experiences, I’ve come to learn a Blind CEO in particular is necessary to extricate every last bit of ableism from the way services are modeled and implemented. In this vein, I was also excited to know the DeafBlind services program is managed by a Deaf O&M specialist, Sook Hee Choi.
I am honored to have joined such a talented team of DeafBlindness professionals, particularly during such unprecedented times. We’ve had to devise many creative strategies for continuing to support clients who depend on physical contact for communication remotely. I’ve been providing training via phone to Hard-of-Hearing Blind clients, and via videophone to Low Vision Deaf clients, thanks to [LightHouse Staffer] Alyah Thomas’ excellent interpreting skills combined with her knowledge of assistive technology and Braille. I sign to the client as usual and Alyah voices in English what the client signs back to me on-screen. This setup offers a much smoother training experience for the client than having to call through video relay interpreters who are not familiar with the technical concepts and vocabulary needed for training. For totally DeafBlind clients, we have been providing real-time technical support through email and texting.
With social distancing in place, many DeafBlind people are completely without in-person tactile communication. Technology for long-distance communication is therefore even more essential than usual; it is crucial that we preserve this one lifeline. We have been ensuring that all clients have the most up-to-date hardware possible, and that all software is functioning at maximum capacity, particularly during such dire times. I look forward to the day we can return to in-person services, particularly for those whose native language is Tactile American Sign Language. I also look forward to expanding all DeafBlind services at the LightHouse in the long term.
With that in mind, if you or someone you know is interested in receiving DeafBlind services from the LightHouse, please visit our DeafBlind Programs page or contact Sook Hee Choi at SChoi@lighthouse-sf.org to learn more.