by Darlene Laibl-Crowe
From the Editor: Darlene is an active member of our Florida affiliate and works hard to help us with projects involving communication and telling the story of the National Federation of the Blind. Although it is seldom apparent when corresponding with her, she faces some interesting obstacles in communicating. In this article she both describes the challenges and tells us how she goes beyond them. This article originally appeared in Vision Access Magazine on May 2, 2015:
Nothing comes between me and my technology! Growing up sighted and wearing bilateral hearing aids, I didn’t know the full depth of what technology would do for me. By the time I was diagnosed with retinitis pigmentosa (RP) at the age of twenty-eight, I had some knowledge of computers and other equipment due to my employment, but nothing like what is available today!
Little changed for me in 1986 after being diagnosed with RP. I was a single mother with a full-time job. I received white cane orientation and mobility to help with the progressive loss of peripheral field or vision. I gave up driving, which meant relying on others for transportation.
Fast forward to 2008. I began to lose more vision and hearing. I was struggling because I could no longer read print, write, or see faces to read lips to accommodate for what I could not hear. Using a reader to complete forms or use an unfamiliar recipe became a challenge. I kept misunderstanding what was being said. Talking to my children, I often had to ask them to repeat themselves; I would repeat what I thought they said, only to have them end up—literally—rolling on the floor in laughter because I had gotten it wrong, and that was not at all what they had said. It might have been funny to them, but it was no laughing matter for me!
In 2011, after meeting others with combined vision and hearing loss, I learned that there are varied degrees of blindness and deafness. I had never considered myself “deaf” while growing up. I remember telling someone once: “I’m not deaf; I can hear something,” a misconception that many have, just like with blindness. Many believe that being blind means being in the dark. Meeting others who shared these challenges empowered me to identify myself as deaf-blind, which allowed me to open myself to a whole new world of resources.
I want to share what I learned—so where do I begin? I found that by changing my desktop display to “high contrast black” that I could see my monitor much more easily. This means that everything is in a black background with white text. I also use Zoom Text magnification software (<www.aisquared.com>), which allows me to adjust the magnification and to change the pointer, focus, cursor, and other features to continue to use my residual vision. For example, since my screen is full black background and white text, it was hard to follow the mouse. I changed the pointer to bright orange, a color I can see but not as well as I used to. Around the pointer arrow there is a green ring that blinks, making it very easy to find. The software also comes with a screen reader that will speak documents to me when my eyes are tired.
I received a laptop and refreshable Braille display through the National Deaf Blind Equipment Disbursement Program <www.icanconnect.org>, which loans deaf-blind individuals equipment such as computers, iPads, iPhones, refreshable Braille displays, and other devices to enhance communication. This program is available in every state and is sponsored by the Federal Communications Commission.
I was appointed by the governor to represent deaf-blind Floridians on a state board and use my laptop during quarterly meetings at various locations in the state. During these meetings I receive accommodations, as do others on the board who are hard of hearing or deaf. The members of this board represent various state departments and organizations that serve consumers who are deaf, hard of hearing, and deaf-blind. These accommodations are provided to promote smooth and professional communication among members of this board, and these accommodations include Communications Access Realtime Transmission (CART), a Support Service Provider (SSP), and interpreters.
A captionist types the transcript of the meeting (similar to a court reporter), and the transcript appears on a website for each of the board members to read. Some on the board are profoundly deaf and rely on sign language. Interpreters relay communication through sign and voice, allowing all in the room to understand what is being said. I am the only blind person on this board.
While using my laptop, I use my Braille display when my eyes are tired. I also use an SSP, who sight guides, relays visual information, assists with communication needs, and in some cases provides transportation. As the SSP guides me into the meeting room, he/she tells me how the room is arranged and leads me to the area where I am to set up my equipment. When I sit, he/she tells me who is sitting where. Using me as six o’clock on the clock face, I am told who is sitting at twelve o’clock, one o’clock, and so on, along with the location of exits or other important features in the room. This helps me to be oriented to the room, people, and objects. Once the meeting begins, the SSP becomes my eyes and ears by observing everything.
As the meeting progresses, I follow the agenda by reading the document that I Brailled prior to attending. If I want to make a comment, I raise my hand. My SSP then lets me know that I have been recognized by the chair by signing to me “hold,” “one minute,” or “wait,” depending on the situation.
Once it is my turn to speak, the chair will call my name. I reach out, turn on my microphone, and speak. The SSP helps me to complete forms, and, if I need to read a document quickly, he/she will do so for me in a separate room during break--all to give me the ability to be professional and be the best advocate that I can for the deaf-blind.
On a personal note I have to admit I am especially proud of my digital hearing aids made by Phonak. I can hear much more clearly with them; however, the accessories are what make my ability to function so much easier. I wear a neck loop device called a ComPilot, which is paired to my iPhone or other devices with Bluetooth capability. The ComPilot has a vinyl-coated wire that hangs around my neck with a rectangular box that lies against my chest. It is two inches wide, three inches tall, and one-half inch thick, with buttons for volume and a switch to turn the device on and off. I can adjust the volume for my hearing aids and for my devices that are connected to it. My favorite device to use with this is my iPhone.
The ComPilot allows me to hear voiceover clearly. The sound goes directly into my ears through the hearing aids. A caller’s voice does the same thing—giving me clarity like never before. I also use inverted colors, zoom, and large bold text with the voiceover on my iPhone, all to help me understand what is being said. The reason for this is that comprehension is not easy when you have hearing loss. It is easy to misunderstand words and, you know what? I believe Siri has a hearing problem, too, because she seems to misunderstand me quite a bit! Believe me, I have been called out on some of the things that I have texted and emailed…let me tell you, I can still blush!
When my phone rings, it chimes into my hearing aids. I don’t have to search for it in my purse. I simply push the button on my ComPilot. I say “hello” right into the microphone at the top of the box; the caller’s voice is clear while the background noise is slightly muted. I can hear what is being said and also some of what is said around me. It can be disconcerting for some people when they realize this blind woman is not talking to herself but on the phone.
Two other devices that came with my ComPilot are the microphone and the TV link. The microphone can be clipped to someone’s shirt when I am in a noisy environment such as a crowded restaurant. This allows me to hear what he/she is saying. Unfortunately, it mutes the background noise slightly, and I cannot hear anyone else. This means that the person who is wearing the microphone must relay to me what is being said. The TV link can be inserted into any audio jack on a music/book player, television, or computer. The link sends the sound to the hearing aids through the ComPilot. I have been able to listen to my book player from inside the house while working in my yard.
I was invited to participate in a webinar and speak about the deaf-blind and their resources. I was told that I needed a microphone to speak. Since I wear hearing aids, a headset is not an option because of feedback—squealing noise that the hearing aids make when something is too close to them. I did some research and found the Seinhausser BT USB. By inserting the USB device into my desktop, I was able to use my ComPilot as a microphone and to hear what was being said during the webinar. It is absolutely amazing how technology changes and evolves so that we are able to function in daily activities and thereby be productive members of society!
Now I am ready for the keys to my driverless car! Bring them on, I am ready to get back on the road again! Nothing comes between me and my technology!