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Being Deaf-Blind During COVID-19

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Editor’s Note:

Here at Bold Blind Beauty our mission to “Improve humanity by changing the way we perceive one another” begins with empathy. Our values rest on the four pillars of P.I.E.R. (Passion, Inclusion, Equity, and Respect). We are passionate about breaking barriers, embracing inclusion, seeing people as individuals, with huge doses of respect. The awesomeness of our world is knowing each of us is unique and our journey through life differs from person to person.

Today, we are pleased to share with you an article written by Casandra Xavier. Casandra will share her perspective on living through the COVID-19 pandemic as a person who is DeafBlind. ~Steph

Being Deaf-Blind During COVID-19

By: Casandra Xavier April 17, 2020

There are going to be challenges for the DeafBlind when it comes to touching objects and people during this pandemic which will feed into additional isolation. Most DeafBlind people experience variations of deafness and blindness. For those who rely completely on touch of persons or things, it would be highly recommended that they keep their hands cleaned and protected at all times as well as their faces. If that is not possible, they would have to avoid people at all costs. When it comes to handling objects; it’s going to be another process of making sure they are able to avoid cross-contamination. I do not believe we would be able to take the new limits of isolation very well. It’s bad enough that we are already isolated within our own DeafBlindness even in large crowds. Some folks are already used to being completely alone while others would have no choice but to adjust. 

In my experience as a 30yr old Deaf-Blind woman living in Boston, MA, I would not be severely impacted by the new limits of not being able to touch people or objects. I have some vision and hearing remaining and I am used to being forced to navigate around barriers in life. I’ve been fortunate with the ability to find ways around complications as best as possible. If I cannot touch someone for the use of ASL (American Sign Language), I would be able to use “close vision signing” in good lighting. If I cannot touch an object, I would protect my hands with disposable gloves. The coronavirus only forces me to tap into my creative ways for avoiding problems in the long-run. I use various sources of assistive technology for distanced communication. When I want to track my stops on the buses before the outbreak, I would use my braille display with a stop tracking app. The app tracks all stops and routes in real-time as we move. I am able to keep the braille on hand and follow as everything moves. Technology for distanced communication is certainly going to replace touching people and objects for the remainder of this virus and beyond. 

If a DeafBlind person caught COVID 19 and needed to seek medical attention, there is a high chance that there would be a massive communication barrier. All medical staff would have their faces covered by masks and most DeafBlind people read lips if hearing voices are difficult. If someone still has hearing and uses amplification devices, it would be best for medical staff to speak louder and clearly if an interpreter is not going to be available. Medical treatment would be critically slower for all parties.  

As far as programs to assist the DeafBlind, there is a nationwide equipment distribution program known as “ICC” which stands for “ICanConnect” for the DeafBlind. ICC is covered by the FCC which allows anyone living with blindness and deafness to receive distanced communication electronics such as phones and computers and such to communicate with anyone they wish.  

If a deafblind individual needed to visit the hospital for any reason and communication is severely limited, there may be a few workarounds. There are a few apps that are accessible to those who use braille devices. The first app is called, “Ava” and it is a transcription app that translates spoken English into a written format which can be used with a braille display. Ava can be used on both iOS and Android devices. The second app is called, “BuzzCards” from Sorenson VRS for iOS and Android. BuzzCards is basically a communication app that can be used to request or communicate. I use all of the above for different situations. 

I am an assistive technology trainer for the blind and visually impaired in Boston and this pandemic has side-swiped my ability to teach anyone face to face. I currently have to train my students remotely and that is a longer process for both me and my students. I communicate with a variation of methods. I use American Sign Language as well as voice. I read braille and blindness-related technologies. I use a Bluetooth hearing aid that is able to connect to my iPhone for streaming media if needed. I used to be able to use SSPs (Support Service Providers) and ASL interpreters for organized events but I cannot do that anymore because of COVID-19. I now have to strategize around the complete lack of help, completing outdoor tasks take much longer. If I cannot find what I am looking for, I end up going home without it. I leave because I am afraid of someone coming near and possibly spreading the Coronavirus to me without knowing. 

My main concern for the DeafBlind people who end up needing medical attention would be the ability to communicate properly with the medical staff. I fear that the medical staff would not know the best practices for helping DeafBlind. Their faces are covered in masks and they are not able to touch the patient or their electronics to relay any communication back and forth.

It’s hard enough helping someone who is either deaf or blind. If you are Deaf, there may not be an interpreter available or the CART (Communication Access Realtime Translation) services may not work properly. If it is a blind person who ends up in the hospital, most staff are strangely uncomfortable with the thought of helping a blind person. The biggest challenge is helping someone who has a combination of blindness and deafness. Honestly, I hope I would not have to visit the hospital because of COVID 19 or during the pandemic. I sincerely hope no DeafBlind person would have to be in the medical facility during this disaster at all.

Final Commentary

Understanding that each of our life’s experiences can be vastly different from another brings us closer to empathy. Remaining open and curious to the idea that every person is unique helps us to be more compassionate with others. This means letting go of our preconceived ideas and respecting differences.

During this unprecedented time, have you considered the challenges people with disabilities might encounter?

Image Description:

The image is a slip of paper stuck on a corkboard that says “Care = Empathy.” 

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WOTM 47 Featuring Casandra Xavier

Casandra Xavier sits at a table with a microphone at Perkins School for the Blind, was in the middle of asking a question. She wears polarized aviators. In the background are two people glancing attentively at her while she asks her question. In this photo, her dreadlocks are draped down her back with a heavy, natural brownish-red color. Around her neck is a phone loop for her hearing aids, she wears a crisp white button down shirt with her braille display strap exposed. She was fully aware of Perkins photographer.

“I identify as deaf-blind and was born with blindness and deafness.” ~Casandra Xavier

Casandra Xavier stands in front of the Massachusetts State house side entrance with her long Iowa cane in right hand with her braille display slung at her right side. She has a tent of green and blue dreadloacks carefully turned into a Bantu-knot Mohawk. Her hearing aid matches the color of her hair. Her eyes are shaded with frameless sunglasses. She wears a crisp white button down shirt with a Swedish grey vest and deep grey slacks. In the background is the side entrance of the house of reps in Boston displaying an awesome ancient structure. She posed for state house news reporter.
Photo credit: Sam Doran from statehouse news

When Casandra Xavier crossed my radar on January 3, I wanted to learn more about her. I saw her in a Blind New World article and needed to share her Woman on the Move story. A quick Google search took me to her amazing address to the Massachusetts legislature video. To see advocacy in action, check out Casandra’s video at the end of the post. You won’t regret it! 

My name is Casandra and I go by the ghostwriter name, “CaspHer.” I am originally from Miami, FL but I grew up in Boston, Massachusetts.

I identify as deaf-blind and was born with blindness and deafness. The conditions I have are both separate and just happen to be with me simultaneously from birth. Those conditions are Anophthalmos and Microtia Atresia.

During my academic career, I did not attend Perkins School for the Blind even though I lived one town over. I also live near the Carroll Center for the Blind and was never introduced to either establishment until I was twenty-four.

Currently, at twenty-eight years old I lived twenty-three years of my life trying to pass as sighted and hearing. I hadn’t begun to learn American Sign Language (ASL) until I was almost twenty-six. Since then I’ve developed enough skill to establish a comfortable working experience with an ASL interpreter.

A Course Redirect Changes Casandra’s Life

I studied visual arts and English literature in college. My plan was to remain in the art world since art was all I knew from a very early age. Looking beyond my world of writing fiction stories, digital photography, and tactile art was no-go. That is until I attended the Carroll Center for the Blind in Newton, Massachusetts.

While attending the Carroll Center, I realized I could potentially become a great instructor for the blind or deaf-blind. I learned Braille with ease and quickly absorbed my other blindness courses. I wanted to learn more blindness related practices.

After training at the Carroll Center, I attended Blind Inc. in Minnesota to fine-tune my blindness skills. This helped to reassure me that I would be okay. On completing my Blind Inc. training I learned I was not your typical blind person. I was indeed a proud deaf-blind woman straight out of the depths of Massachusetts!

During training in Minnesota, I lost more hearing! Most people would have fled the scene but I’m not most people. I’m Casandra. I dug my heels in further and rode it out until the wheels fell off with extreme but minor modifications to my training.

Satisfied with what I accomplished in Minnesota and teaching at a center for the blind; I flew back to Massachusetts and dove hands-first into ASL class at Perkins (2015-16). During my first ASL class, I excelled and was ready for the next level. I outdid myself at all other levels as well! I used a pro-tactile ASL interpreter to access information in an extremely visual class. Deaf-blind students use pro-tactile ASL interpreters to gather classroom information. The pro-tactile ASL interpreters use a technique to sign into the students’ hands.

The Student Becomes The Teacher

As I submerged myself into the deaf and hard of hearing (HOH) community, I was presented an opportunity to become an assistive technology trainer. For the longest time, I was totally stunned that something so great would happen to me.

I worked diligently with my students and ensured everyone learned something. While doing all of these awesome things, I was still working on my signing skills which were coming along very well.  I felt it was totally fine to feel proud of myself since I worked and struggled so hard to get where I was at the time.

Though I missed out on learning deaf-blind skills when I was young, I have become an advocate for the disabled and the LGBTQ community. In the past year, I filed some legislation on disability awareness training starting in Massachusetts with intentions of it becoming federal law.

While there are many pieces of similar legislation, mine will stand out because people within the disability community can observe and offer constructive commentary. This will ensure a positive experience for everyone.

I enjoyed the wonderful opportunity working with the Massachusetts State House while bringing this legislation to life. During this encounter last summer, I got to see the inner working of the House of Representatives.

At college, I learned a technique called, “application of knowledge” and I’ve carried it with me until today. I have decided that I would take all of what I’ve learned from the Massachusetts State House and apply it to my work as an advocate in the community. Not only did I use this method while advocating, I’ve also used it as an assistive technology trainer for the blind and deaf-blind as well.

Freedom Of Being Heard

Letting my voice be heard after many years of being left in the dark and forgotten was the best and most encouraging experience ever. The power of exposing my strength was far too good to let go of, so I held onto that exposure and gave myself the title, “Disability Advocate.” I feel I have earned this title and it’s exactly how I want to be recognized. In the past few months, I have been invited to speak at schools in Boston and online podcasts to talk about my story and what I am doing. For a majority of my presentations around the city, I will use an interpreter.

These days, I am still an assistive technology trainer in Massachusetts and still learning additional ASL skills. I am very involved with advocating for and with the constituents of Boston.

Whether I am presenting or not, I always enjoy wearing a fedora hat with or without a necktie from Men’s Wearhouse and crisp white button down. A lot of my friends tell me I look like I am about to perform a music video whenever I dress up. Speaking of music, I enjoy shredding on the electric guitar and occasional karaoke sessions. I’ll be honest, outside of the extreme seriousness, I enjoy going out to gay clubs and having a blast with the drag queens and some friends in downtown Minneapolis.

I hope you enjoyed this trip down story lane.

Thank you.

Casandra Xavier’s Featured Photo Description: 

Casandra sits at a table with a microphone at Perkins School for the Blind, was in the middle of asking a question. She wears polarized aviators. In the background are two people glancing attentively at her while she asks her question. Casandra’s dreadlocks drape down her back with a heavy, natural brownish-red color. Around her neck is a phone loop for her hearing aids, she wears a crisp white button-down shirt with her braille display strap exposed. She was fully aware of Perkins photographer.