WHO and WHERE?

• DeafBlind does not mean fully Deaf and fully Blind. There are many gradations, combinations, and causations for both sensory losses. There is a huge spectrum and diversity, making every individual unique in the way they sense and interact with the outside world.

• DeafBlind are their own cultural and linguistic community (originally fostered and supported by the sign-language-using Deaf Community).

• DeafBlind is no longer hyphenated (Deaf-Blind), but joined, with both Deaf and Blind being capitalized to focus on the combination of both Communities from which these individuals identify and support.

• DeafBlind is the current “acceptable” name. Note how Deaf and Blind are both capitalized, indicating two different cultures/cultural perspectives brought together inside one individual.

• DeafBlind have been largely ignored as a community, in America and especially in other countries where even Deaf individuals are still fighting for recognition and equality.

There are 3 Large DeafBlind Communities in the U.S.:

1. Seattle, WA

2. Louisiana, LA

3. Washington, D.C., MD, VA (Tri-State area)

—

*New York City and Sands Point, NY (Long Island) have communities of DeafBlind individuals, since the Helen Keller National Center is in Sands Point.

**There has been an influx of DeafBlind members moving to Monmouth, Oregon, near Western Oregon University’s campus, due to the awarding of a Federal Grant (2015-2020) which focused on Pro-Tactile ASL (PTASL), DeafBlind Educators, and providing training for Interpreters who work with DB individuals.

WHAT and HOW?

DeafBlindness has multiple etiologies (causes)

Genetics (Congenital Etiologies)

• Usher Syndrome – Type 1 (Born deaf, become blind later in life [after 10yo, usually])

• Usher Syndrome – Type 2 (Born hard of hearing, become more deaf and blind later in life)

• Usher Syndrome – Type 3 (Born sighted and hearing, become more deaf and blind later)

Diagnosis of “Usher Syndrome” depends on the varying degrees to which the senses of hearing, vision, and balance are negatively affected. NIDCD-National Institute of Health - Usher Syndrome (webpage)

• Retinitis Pigmentosa

Wikipedia - Retinitis Pigmentosa (webpage)

Illnesses (Adventitious Etiologies)

• Retinal Detachment

• Macular Degeneration (National Institutes of Health, webpage) (though newer research points to genetic causes for over 50% of cases)

More information about Age-related Macular Degeneration (webpage)

• Cataracts

• Severe Head Trauma

Communication Strategies

• Tactile ASL – 1-Handed, 2-Handed

  • The DB person will place their hand(s) on the hand(s) of the interpreter/signer to "feel the signs" and movements in the signing space. 2-Handed signing requires that the DB person and the interpreter/signer sit face-to-face (usually with knees interlocked), which can be heavy on each person's shoulders/back over time. 1-Handed signing allows the DB person and the interpreter/signer to sit side-by-side (or slightly angled towards each other 90-degrees. Again, the DB person will put their preferred hand (dominant) on top of the interpreter's/signer's nearest hand and "feel" the signs.

  • When the DB person wants to communicate s/he/they will remove their hands and regularly sign in their normal signing space.

• Fingerspelling – Rochester Method

  • The interpreter/signer will fingerspell every word (in English word order), while the DB person places both hands around the fingerspelling hand—also called a "bird's nest" technique—to catch the movements and different letter shapes. More fluent DB people can use 1 hand on top of the interpreter's/signer's hand.

• Tracking

  • The DB person who has limited or reduced/low vision will sit, facing the interpreter/signer, lightly holding both of the signing wrists in their hands. This allows the DB person to constrict the signing space of the interpreter/signer into those useful areas of their visual field(s). The DB individual can also feel the general movement and locations of signs to help deduce what signs are being produced.

  • When the DB person wants to communicate s/he/they will remove their hands and regularly sign in their normal signing space.

• Close Vision (reduced signing space)

  • The DB individual may sit/stand, facing the interpreter/signer (~1 to 4 feet). Due to the DB person's reduced visual field(s), acuity, and clarity (or lighting/shadows in the room), they may only have useful vision at very close ranges.

  • The interpreter/signer will have to limit their signing space to a much more space-restricted signing "box", perhaps a little below their chin, up to their eyebrows, and a few inches to either side of their face. Certain signs and fingerspelling will have to be altered, especially if the signs are anchored to specific locations on the face, body, or elsewhere. Signing speed may need to be reduced and content summarized/altered to adequately provide a clear and concise interpretation, without degrading comprehension and detail.

• Far Vision (average-to-larger signing space)

  • The DB individual may sit/stand, facing the interpreter/signer (10 to 20+ feet away). Due to the DB person's reduced visual field(s) and clarity (or lighting/shadows in the room), they may only have useful tunnel/central vision at farther-than-normal ranges. Seeing someone so far away may allow them to capture the full signing space with more clarity and comprehension.

  • The interpreter/signer will NOT have to limit their signing space, though certain signs and fingerspelling will have to be altered/exaggerated. Natural mouthing and Non-Manual Mouth Morpheme Signals (NMMSs) may need to be exaggerated and more pronounced to be seen from a distance. Signing speed may need to be slightly altered/reduced and content summarized/altered to adequately provide a clear and concise interpretation, without degrading comprehension and detail.

  • Try using a toilet paper or paper towel tube to look at your TV or computer screen up close (a slightly-closed fist will work too!). Now move away and focus on something farther away (a picture or the entire TV/computer screen). Up close, you may get the fine detail, but farther away, you get the bigger picture.

• Braille – encoded English, letter-by-letter as a 6-dot “cell”. For more information: The History of Braille (Brailleworks.com, webpage). Braille is widely learned and used by hearing people who are blind or have lost useful vision. Since it's a code for spoken/written languages (letter-by-letter), as long as someone is literate/fluent, s/he/they can easily learn Braille.

  • Some DB learn Braille (especially those who have lost all of their functional vision), though many may not...just yet. Since they may have functional vision, large print and magnifiers/apps/Closed Circuit TV devices satisfy their reading needs.

  • If anyone lives long enough, their hearing and sight will eventually fail (presbycusis and presbyopia). Learning Braille—visually or tactually—is always a good skill!

• Haptics

  • "Haptics is a standardized system for providing and or receiving visual and environmental information as well as social feedback via touch signals on the body."

  • Typical locations for receiving haptic signals: upper back, shoulder, lower arm, back of hand/wrist, palm of hand, lower thigh

  • Center on Technology and Disability (CTD) - Haptics (Video, 7:41)

• Pro-Tactile ASL

  • Building on Tactile ASL, Pro-Tactile ASL (PTASL) has been formally recognized as a distinct and separate language from visual ASL used by sighted Deaf Americans. PTASL includes cultural and philosophical approaches grounded in touch (and independent of sight and sound). Additionally, it is a growing language with a small core group of users, but is changing as more and more DeafBlind TASL users become acquainted with it and add to the vocabulary and acceptable linguistic practices.

  • In the early 2000s, founders Jelica Nuccio (yuh-LEET-zuh NEW-tsee-oh) and aj granda (prefers their name be lowercase) had tossed around the idea that DeafBlind people who have used TASL for decades, if not centuries, have always made linguistic "adjustments" in space, touch, and approach when communicating with each other. They began to map out and compare TASL with ASL and other spoken/written languages. Others assisted with comparative linguistic research and field interviews.

Additional Considerations

In all cases, when working with DeafBlind individuals, the interpreter/signer should be aware of their clothing, hygiene, lighting, shadows, and placement.

Clothing

• Wear clothing that is solid (no rips/tears, writing, pictures, designs, etc.), non-glaring/-shiny, and is high-collared and long-sleeved shirt to provide the most contrast between their skin and signs.

Hygiene

• DB individuals deserve an interpreter/signer who is professional, well-groomed, and follows increased general hygiene standards—especially washing hands and face, brushing teeth, wearing no-scent anti-perspirant/deodorants, avoiding strong odors (coffee, cigarette smoke, perfumes/colognes, etc.), and keeping one's hair out of the face/signing area. Some DB people will have heightened senses of smell and taste. So unwashed bodies/hair/clothing, messy hygiene standards, strong food options (garlic, spices, etc.), and dirty hands/fingernails will be easily noticed.

*With their hands touching the interpreter/signer (and vice-versa), having good hand-washing hygiene is especially important!

Accessories

• Earrings, rings, necklaces, bracelets, even watches should be low-key and unobtrusive. Overly shiny jewelry in the signing visual field can be distracting from the "message" that is being signed. Reducing any sources of distraction is a best practice. (If in doubt, remove most jewelry, watches, rings, earrings, and necklaces. You wouldn't want any of them to get caught by the DB person's hands/fingers, or their jewelry. You definitely don't want an earring accidentally torn out either!)

Lighting, Shadows, and Placement (of everyone!)

• A DB person's useful sight/hearing may wax and wane throughout the day. They may be overly sensitive to certain frequencies of sound or types of lighting.

• If they have residual hearing and use assistive listening devices (hearing aids, Bluetooth receivers, FM Loop systems, cochlear implants, etc.) they will need to make sure they are tuned to the correct channel or inside the room's FM radio loop-coil boundary. They may prefer to speak for themselves or sign and have someone voice into English their comments. (The interpreter/signer should be prepared to voice for the DB individual, making use of microphones or speaking loudly enough so everyone can hear the DB person's comments.)

• Lighting on the interpreter/signer should be natural, bright (yet diffuse), and be focused on the signing space: upper torso, face, hands, and chin. Never sit with a light source (including windows, open doorways, or other distracting backgrounds) if the DB individual has useful vision and needs to see the interpreter's/signer's signs.

• A portable backdrop/curtain that can be moved and adjusted is always a welcome item to have ready. This will help cut down on shadows and glares from background sources. Being outside can also pose its own issues, so be cognizant of all of the factors that may interfere with clear reception of signs, facial expressions, body language, mouth movements, and use of signing space.

• Asking the DB individual what lighting, background, and placement work best for them is always a smart starting point. Continue to inquire throughout. Adjustments can always be made during the session/meeting/event.

• Having non-fixed, moveable chairs, pillows/cushions, and even foot stools and adjustable/moveable tables work best with a room full of DB individuals. Since every person will have their own unique needs, placement, and accommodations for their interpreter/signer (or team of interpreters/signers!), fixed seats—like in movie theaters, cafeterias, and college classrooms—are barriers for DB individuals.

Helen Keller - Most likely this is the first thought you have when "Deaf and Blind" is mentioned—Helen Keller—the eponymous poster child for DeafBlindness throughout the years! She overcame amazing obstacles, thanks to her family and Anne Sullivan. But she didn't know ASL or many signs. Her main communication strategy was Fingerspelling into her hands and [3:08, YouTube]

The Braille Institute (website)

TedTalk - "DeafBlind: Blind But Not Blind", JennyLynn Dietrich [12:46 YouTube Video]

"Welcome to Pro-Tactile The DeafBlind Way" - Vlog #1 with English transcript, aj granda and Jelica Nuccio [9:43, scroll to bottom]

"Pro Tactile ASL for DeafBlind children" - [2:09, YouTube]