Covid-19 and Digital Equity for Deaf-Blind Learners: My Experience and the Importance of Self-Advocacy
On Friday, March 13, 2020, when the President of the United States declared a national emergency due to Covid-19, I was 14 years old. All I cared about was the final few months of my eighth-grade year, with all the fun festivities in store, as well as finally getting excited to start high school. My family and I had been working alongside my team, which consisted of my case manager, my teacher of the blind/visually impaired, my teacher of the deaf, and my deaf-blind vocational rehabilitation counselor, over the course of the prior months to ensure all details of my IEP were in place for the big switch to high school.
I have a condition called Usher syndrome, specifically Type 1b, which means I was born profoundly deaf and am slowly going blind. I wear cochlear implants, and at that age, I had approximately 40 degrees of central vision. I wasn’t nervous about transitioning to a new school because I had my IEP, and I was confident about being able to discuss my needs with all my new teachers since it’s something I’ve been doing for years. However, things took a turn when it was announced a week later that our district would be going remote, and an entirely new convention of learning would become prevalent over the next few years.
Assistive Technology for Online Learning
To learn online, the most critical thing was ensuring I had both auditory and visual access. The priority at the time was audio access since I could visually navigate a MacBook—the device that would become the hub for all my technological supports. The district provided the general student population with Chromebooks; however, they weren’t fit for my needs. For the sake of time, I opted to utilize a personal device.
Some of the issues that were encountered with hearing were, for one, teachers would be in their classrooms, which tended to have an echo, thus distorting the audio. And, as time passed, there was a point where some students were returning to the classroom, which resulted in teachers having to wear masks while teaching, taking away my ability to rely on reading lips. This meant it was necessary for them to wear microphones, which my mother and I advocated for and, with the help of my team, were able to acquire.
There was also the matter of closed captioning. In those early days of operating virtual platforms, auto-generated captions were not available. So again, my mother and I had to scour the internet for a resource. Thankfully, we discovered a free resource that had the ability to integrate with Zoom and generate transcripts in a separate window. Not ideal, but an interim solution.
Lastly, to access audio through my cochlear implants, I utilized a cochlear TV streamer. Since my devices weren’t compatible with my Macbook, I mirrored to my Roku TV as a larger monitor and audio source. Yes, that’s a lot of streaming, which resulted in a request to the district for a personal hotspot for me so my siblings and parents, working from home as well, could also maintain access without my several devices interfering. The culmination of all these accessories and resources put together allowed me to be successful in a remote setting; however, so much stress could have been alleviated if there were deaf-blind professionals who were well versed in technology to provide guidance.
Bringing School Into the Home
With the sudden arrival of Covid-19 altering the normalcy of life, everyone was forced to adapt and learn how to instantaneously rely on technology, especially teachers implementing the curriculum virtually for their students. Once again, deaf-blind learners became isolated without accessible technology at their fingertips. Direct service providers knew how to bring access to their students in classrooms, but this was a whole new playing field. With limited deaf-blind professionals in the field, families had to rely on one another and think creatively to bring school into the home. Those who had collaborative relationships with their school districts and open communication with their team were able to piece together a sustainable plan; however, many deaf-blind learners were left without instruction for months, even years. This brought to light the need for technology training for general education teachers and those who provided direct services to students in the hard of hearing/deaf, visually impaired/blind, and deaf-blind communities.
Thankfully, my team was very open minded, and my mother worked in the field of technology for deaf-blind consumers, so she had a level of expertise. Not a norm for most families, which keeps me wondering, “How did they do it?” With all this being said, it opened my eyes to how rapidly technology is evolving and how essential it was—and is—to stay on top of knowing how various devices and their respective accessibility features work.
That’s when I made the decision, with the guidance of my mother, to have technology training. We felt this decision was in my best interest because the future of my vision is very unknown. Building this knowledge of technology from a young age would prove to be very beneficial. I also received weekly braille lessons to stay on top of learning the code as I had in years past. Having the opportunity to continue learning braille on a newly-introduced braille display back then also provided a realistic example of how I would transition when I could no longer rely on my vision. While my technology trainer did not know braille, he was experienced with working with people who are deaf-blind, and he was essential during these lessons since my teacher of the visually impaired was not savvy with these resources.
These things, along with many other resources I’ve acquired along the way, have helped fill my toolbox, which I can turn to in case any sudden changes occur. This growing knowledge has allowed me to share what I’ve learned to educate professionals to prevent others from feeling lost or secluded when a difficulty with technology arises.
The Importance of Self-Advocacy
In the end, the entirety of this experience has taught me the true importance of self-advocacy. In the years leading up to when I turned fourteen, my mother encouraged me to always communicate what I needed or any challenges I encountered. Having opportunities to educate my peers, raising awareness in my local community, and being involved in my Usher community gave me the confidence I needed to really understand my diagnosis and identify my personal needs as they are ever changing. I am so grateful she gave me the opportunity to speak for myself, and when something was out of my scope, she would take charge and explain to me in a way I could understand.
In those years, I was lucky enough to prevent any major issues from arising, but when Covid-19 made an appearance, it was a pivotal occurrence that helped strengthen my understanding of advocacy. That was the age I started taking the reins more and more each year, until now where I’m seventeen and essentially running my own IEP meetings. Another vital lesson Covid-19 has taught me was how necessary it is to be prepared. As I noted earlier, there’s no guarantee for how my vision will deteriorate, so I need to take advantage of the limited vision I have now to build a foundation of a multitude of skills and resources to rely on when necessary. All in all, I’m greatly appreciative of my team, fellow Usher families, and most of all, my mother and family for providing such a sound support system during a time of need to allow me to continue my education without hindrance.