The DeafBlind Community and Telecommunications Access
Communication is fundamental to human interaction and belonging. Without it, we would end up confused, frustrated, and lonely.
In the U.S., there are approximately 50,000 people who are DeafBlind. The DeafBlind community represents a distinct group that, due to combined hearing and vision loss, presents with a unique set of challenges and experiences when it comes to communication.
DeafBlindness Causes
Although DeafBlindness is a combination of hearing and vision loss, each DeafBlind person’s experience varies. These depend on the cause and severity of hearing and vision loss. In many cases, other disabilities accompany DeafBlindness.
One of the main causes of DeafBlindness is Usher syndrome, a rare genetic disorder that causes hearing and vision disabilities. There is no cure.
Some common causes of DeafBlindness include:
- Hereditary disorders: Usher syndrome, CHARGE Syndrome, Down syndrome
- Prenatal complications: hydrocephaly, microcephaly, cytomegalovirus
- Postnatal complications: meningitis, brain injury
A Tenuous Social Connection
Like the Deaf and Blind communities, communication with DeafBlind people can require flexibility and creativity. This can stunt the development of strong social skills and the ability to interact with others who are not DeafBlind.
Some ways that poor social connections can affect a DeafBlind person’s livelihood:
- Higher rates of anxiety and depression
- Avoiding people outside of their family
- Social isolation
- Low self-confidence
- Non-DeafBlind peers often overlook and ignore them
The desire for human connection and independence remains. DeafBlind people want to be involved in activities and be part of society, and also have relationships with their peers.
Understanding the DeafBlind Community
It’s important to remember that one DeafBlind person does not represent the entire DeafBlind community, just as one Deaf or Blind person does not represent their respective community. Each DeafBlind person has their own unique experience related to communication.
DeafBlind people usually have residual sight or hearing. It’s rare to have total loss of both sensory disabilities. Both disabilities can occur at the same time, or separately, and the severity can differ from person to person. The severity of hearing and vision loss determines their communication and accessibility needs.
Want to know a DeafBlind person’s specific communication needs? Ask them. (But first, ask them how they prefer to communicate. That’s the best way to start a conversation.)
Unique Needs of the DeafBlind Community
The DeafBlind community uses assistive technology in a way that intersects with the needs of both the Deaf and Blind communities. Let’s look at the assistive technologies that both the Deaf and Blind communities use.
Assistive technology for Deaf people to make telephone calls:
- Internet Protocol Captioned Telephone Service (IP CTS)
- Video Relay Service (VRS)
- Instant messaging (IM)
- Text-to-911
Assistive technology for Blind people to make phone calls:
- Screen readers
- Magnification software
- Optical readers
- Captioned phones
For mobile:
- VoiceOver and Siri (iOS)
- TalkBack (Android)
- Google Assistant
A DeafBlind person may use a combination of these assistive technologies, but some, like Robert Hawbaker and Catarina Rivera, don’t use VRS.
DeafBlind Consumers Who Don’t Use VRS
Robert Hawbaker, a work-from-home systems engineer who’s been DeafBlind since birth due to Usher syndrome, says he doesn’t use VRS but uses VRI for in-person appointments. He has near-total deafness and cataract surgery mostly restored his eyesight in January 2023.
“If calling is a must, I use IP Relay,” Mr. Hawbaker says. He doesn’t use VRS as he’s more English-based than ASL. (For context, ASL is a visual language with its own grammar, vocabulary, and word order, a language that Deaf people created.)
“My original reason [for] not using VRS was, I knew exactly what I wanted to say in English,” Hawbaker says. “Using ASL, sometimes there may be several ways to say a single ASL ‘statement’ in multiple English statements.”
These days, Hawbaker doesn’t use VRS because of his deafness and vision. The delays in receiving information from the ASL interpreter and the need to repeat himself make it difficult to use VRS (since he can’t see everything the interpreter signs).
VRI, on the other hand, is easier to use because Mr. Hawbaker is in the same room as the doctor with whom he’s communicating via a sign language interpreter over video. He feels comfortable asking the interpreter to repeat information when needed.
On the other hand, Catarina Rivera, a self-described “light-skinned Latiné woman with dark brown hair,” doesn’t communicate in ASL. Therefore, she does not use VRS. Instead, she relies on other free telecommunication tools to make and receive phone calls.
“I make all my calls with Google Meet if it’s a meeting,” she says. For the occasional audio call, she uses a mobile captioning app similar to CaptionCall. Ms. Rivera relies most on her hearing aids, which have Bluetooth capability, enabling her to understand speech more clearly with high-quality audio
Ms. Rivera began wearing hearing aids at a young age and was diagnosed with progressive vision disability due to Usher Syndrome at age 17. As a DEI consultant, speaker, and founder of Blindish Latina, her goal is to help create a more inclusive and accessible world. She uses her Instagram page to share her various experiences navigating the world as a DeafBlind person.
VRS For Important Phone Calls
Joshua Jones, a DeafBlind owner of an interior design business, says he prefers using email and text over VRS because phone calls can be time consuming. He will, however, use VRS when email or text is not practical.
When using VRS, he has encountered comprehension challenges such as poor contrast between the interpreter’s hands and background and low or bright lighting. Since a large part of understanding ASL is about reading facial expressions, even beards on male interpreters can be frustrating.
“Since I rely on facial expressions for better comprehension, a few male interpreters have had beards covering most of their faces, making it hard for me to interpret their expressions,” Mr. Jones says.
Furthermore, he says, “As a result, I’ve had to request a different interpreter in such cases.” For DeafBlind users who may not have the access to assistive technology that these three DeafBlind users have, the FCC created a program to provide no-cost telecommunication tools for eligible DeafBlind consumers.
The National Deaf-Blind Equipment Distribution Program (NDBEDP)
Every U.S. state has a program that helps DeafBlind consumers obtain no-cost communications equipment and training for making and receiving phone calls. Before a DeafBlind person can get this equipment through NDBEDP (including internet access), they must meet specific disability and income qualifications.
The Federal Communications Commission (FCC) launched the National Deaf-Blind Equipment Distribution Program (NDBEDP), also known as iCanConnect (iCC), in 2012, so DeafBlind people could have full communication access to others who are not DeafBlind.
The products available through iCC include:
- Accessories
- Braille devices
- Computers
- Mobile devices
- Phones
- Signalers (alerts)
- Software
VRS and Braille Readers
Sorenson now provides VRS services compatible with Braille readers for DeafBlind customers — a service it took over when original provider GlobalVRS suspended its VRS operations — to accompany the further expansion of telecommunication accessibility for both the Deaf and DeafBlind communities.
When signing up for a VRS account, you are prompted to indicate if you use a Braille reader for VRS calls. If you do use a Braille reader, the system directs and connects you to VRS services explicitly designed for Braille readers.
When a DeafBlind person calls VRS, the interpreter will respond by typing to the DeafBlind person’s Braille reader. To indicate the message has ended, the interpreter will type “GA,” to mean “go ahead.” This tells the DeafBlind person it is their turn to respond. The DeafBlind person will then use ASL in front of the camera so the interpreter can see them, and the interpreter will voice their message to the recipient of the call. The DeafBlind person will type “GA” to let the interpreter know it is the recipient’s turn to speak. The interpreter will then type what the recipient is saying, and so forth.
A Revolutionary Videophone
In October 2023, when Sorenson took over GlobalVRS’s video relay functions, part of this acquisition included a promising telecommunications app for DeafBlind people.
The app is myMMX db, “the world’s only accessible videophone for DeafBlind customers,” which gives DeafBlind consumers the ability to independently place and receive phone calls without an interpreter or intermediary. Bryen Yunashko, a DeafBlind advocate with Usher syndrome, is the official distributor of myMMX.
Conclusion
What can we learn from Mr. Hawbaker, Ms. Rivera, and Mr. Jones’s use of VRS? How can we improve VRS services for the DeafBlind community?
- Hire high-quality, certified ASL interpreters. Then give them the tools they need. Make sure they always wear dark clothing. Encourage them to use an appropriate setup, with a high-contrast background and high-resolution camera.
- Improve the assistive technology interface. For DeafBlind users who have some sight, an interface with color contrast and larger images can go a long way toward creating a pleasant “larger” viewing experience.
- Solicit feedback from DeafBlind users. To promote the benefits of VRS, conduct market research to learn how to improve VRS features.
- Incorporate haptic technology. Enable the DeafBlind user to feel vibrations during the conversation. Much like a Deaf person with total hearing loss, the DeafBlind user can feel the vibrations even if they may not be able to hear as well. This could enhance the overall VRS experience.
- Integrate closed captioning. This could provide another way to make the conversation more accessible, especially for a DeafBlind user with some vision. For example, you can use a Braille reader with closed captioning.
By following these recommendations, we can make it easier for DeafBlind people to use VRS.
The goal of assistive technology is to help people with disabilities lead independent lives.
Despite advancements in telecommunication services, gaps remain that leave out the DeafBlind community. A one-size-fits-all approach does not work when we have users with sensory disabilities who experience the world differently, as we’ve seen through Hawbaker’s, Rivera’s, and Jones’s stories.
Let’s start prioritizing innovations that involve DeafBlind people’s communication needs when developing assistive technologies. We should also actively engage the DeafBlind community in the design and testing process of these technologies. Their firsthand experiences can inform more inclusive telecommunication technology.
