Visually Impaired: Now What?

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Including Yourself in a Faith Community as a Person with a Visual Impairment

Silhouette of woman standing with arms outstretched facing morning sunrise

When you lose vision, at first it might feel like you are unable to participate fruitfully in a faith community. Whether you’re new or a long-term member, some aspects of congregation life that you’ve always taken for granted can suddenly feel uncomfortable as a worshipper with blindness or visual impairment. Who’s saying hello? What are the words we’re singing? How do they take the blessing or communion here? We’re sharing this information in hopes that you won’t give up attending your faith community of choice if you’re experiencing vision loss now, or that you’ll consider visiting a new one if you’re interested.

VisionAware offers tips and resources intended to help you be part of whatever congregation you choose. While some of these resources are specific to certain faith groups, many can apply to almost any worship setting.

Before You Go

Going to a place of worship for the first time, or for the first time since vision loss has occurred, can be much easier if you do a little detective work first. If you can visit its website, information such as location, times of worship and activities during the week that may be of interest to you are usually posted. A quick call to confirm never hurts. Here are some questions you might want to ask:

  • If you are not able to find your way to the building independently, is there any volunteer ride service available to and from worship or other activities?
  • Is it on a bus line or some other means of public transportation or do you have other means of transportation?
  • If yes, but if it is difficult for you to navigate somewhere new, would it be possible for a member of the community to meet you at the transportation stop for the first one or two visits?
  • Are there steep or unexpected steps or other architectural challenges that you should know about when you visit?
  • Are service dogs welcomed? (Religious institutions are exempt from the ADA. Read the FAQ on Service Animals, Q34.)
  • If so, is there any available green space for its needs?
  • How is the lighting, and is it ever dimmed?
  • What are the acoustics like, and would there be a better place to sit for best hearing? Or are there assistive listening devices available for use?
  • Does the community have any regular attendees with visual disabilities you could meet?
  • Does the congregation offer any materials in large print or braille? If not, is it possible during the first and/or second visit to have a volunteer sit beside you to explain or assist, cueing you when it’s time to stand, kneel, etc.?
  • If blessing, communion or other individual ministry is involved, could you get an explanation beforehand to avoid awkwardness going to the front or receiving something? (Some leaders are very willing to come to you.)
  • Is there a publisher that could provide large print or braille materials? If not, could the congregation leader or music leader send recordings, texts or other information ahead of time for you to read or listen to?

Stay Involved

Even if you are not new to your community, some of the above questions might be valuable to discuss one-on-one with community leaders. If you have any concerns owing to your vision loss, you can always talk with them; remember, it is as much in their interest to keep you in the fold as it is in yours to stay there. Some of your conversation can involve making suggestions. Few leaders have disability-specific training or resources, and you may serve as expert in this area to help not only yourself, but also future guests and members.

Ways to Stay Involved

  • Community outreach such as cooking, calls to shut-in members, prayer circles
  • Offer to lead study groups at the place of worship or in your home
  • Group or individual music participation
  • Answering phones or guest inquiries
  • Any other volunteer activity you feel comfortable with that would keep you visible and active in the community

Responding to Well-Wishers in Your Faith Community

It is common to encounter people asking questions far beyond the usual chit-chat once you enter a faith community. Many people have great intentions, but they may be quite lacking in information about your disability or personal situation. It’s important to keep this in mind when you respond, but it’s also OK to set boundaries such as stating, “I don’t feel comfortable discussing that,” or “I don’t think you know me well enough to talk about that.” On the other hand, fellow community members may offer kindness or social opportunities not available to you in other areas of your life. As long as you feel comfortable, it’s all right to discuss your disability, your needs or your desire to go deeper in your faith walk or service to the faith group.

At times, well-meaning people of faith may offer, or even ask to pray for you in private or in public. It’s not uncommon for someone to believe that prayer can help or even heal you. Again, the ball’s in your court in deciding how to answer this request. You may feel the desire or even the need for prayer, and all the more from someone who wishes to provide it. Or, while you may appreciate the gesture, you may wish to redirect the good intention. Here are a few examples of honest and courteous answers you might want to keep in mind in case you are in such a situation:

  • “Thanks for praying for me. In fact, I am having eye surgery next month, and I would really appreciate your remembering me.”
  • “I am all right with my vision loss, but could you remember my cousin Lola, because she has cancer right now, and they don’t know what to do,” or “I appreciate your asking, but I am fine. But maybe there is something I could pray for in your life?”

Do you have other tips for staying active in your faith community? Drop us a line at connectcenter@aph.org!

Related Articles

Faith Resource List

Meeting a Person with Vision Loss

Meeting a Person with Hearing and Vision Loss

Finding Rides When You Can't Drive


You Cane Give: Making an Amazing Difference

Members of Team Kenya standing together smiling at camera

Editor's Note: James Boehm, VisionAware Peer Advisor, recently participated in a special mission to give blind residents of Kenya and Africa independence, mobility training and a new hope. He wanted to share through VisionAware his personal experience with the White Cane Initiative's Team's work. Other team members included Paul Mugambi, Hilda Mulandi, Laureen Agola, Karen Nelson, and interpreter Florence Mithika. The post was edited by Maribel Steel, VisionAware's International Agency of the Month Correspondent.

Trip to Kenya 2019

While in Kenya, the team visited 4 cities and conducted 5 trainings. On each training day, the team planned for 20 mobility canes and 20 audio Bibles to be distributed. Security was high, and throughout the team's travels, there were numerous security checkpoints where often the vehicles and their contents had to be searched. But the team was able to get their supplies through customs

Happy Recipients in Nakuru

On the first day, the training team and partners met to discuss logistics. Then the team set off to Nakuru, leaving. at 5:30am that morning and returning around 8pm.

The team met many older blind individuals who had never owned a cane. They expressed that previously no one had taken a personal interest in their ability to navigate independently. That day the team gave away approximately 20 canes and 20 audio Bibles. A fifty-five-year-old man named Albert was the first individual to receive a mobility cane.

The women were so moved by the team’s visit and their new canes and Bibles in Swahili, that they broke out in song. Many of them who spoke little English were able to say, "Thank you Global Cane!" over and over again.

One elderly lady had a skinny, heavy, metal water pipe that clunked loudly as she used it for a makeshift cane. She said, "No one has ever cared enough about how I’m surviving and how I’m living."

Day 2--Visit to a College

During the 11-hour return trip to Machikos, eight volunteers in one van set off to visit a college for people who are blind, deaf, or have other disabilities. Volunteers were greeted by many hugs from the staff and students and were welcomed with authentic foods and tea. The team trained over 70 students although they were worried about running out of canes. A blind a cappella group sang a song based on Psalm; a student sang a poem that he wrote personally,in celebration of the empowering white cane – known as Swahili as "gongo."

Training in Difficult Terrain

One of the directors gave James a tour of the grounds of the college and surrounding area, to demonstrate the rough terrain these students must learn to navigate. Although worried about running out of canes, the team was able to equip most students. Several students even donated their used canes to be refurbished! In addition, all students received mobility training from Karen and the team.

Visit to Primary School for the Blind in Thika

At a primary school for the blind in Thika on Day 3, the team was warmly welcomed by staff. The team was deeply moved and humbled when we heard there were 220 students and teachers who needed canes, yet the team had only 30 canes to offer that day. The team promised to return at a later date.

Excitement on Days 4 and 5 in Nairobi

James met directly with the heads of the Kenyan Union of the Blind and the African Union of the Blind. Both organizations were keen to discuss the progress of the current White Cane Initiative, as well as future collaborations with Paul Mugambi, who originally had the vision for the Kenya White Cane Initiative.

The team distributed the remaining 40 canes and 40 audio Bibles and also met inspirational people including a blind, female minister named Mary, who received her first accessible copy of a Bible. Another young woman who is a singer, songwriter, musician, grad student, and the host of two local TV programs received her first mobility cane.

Mobility Instructor Karen managed all challenges, including a young mother who came for mobility training with a baby on her hip! While holding the baby, Karen trained this woman and the rest of the students using the structured discovery method of training (instructional services consist of non-visual techniques, problem solving strategies, experiential learning, and confidence building experiences) including using the guide "The Feeding and Caring the Long White Cane," found at YouCanGive.org.

This method was especially beneficial for the environment and terrain in Kenya. There are few sidewalks and shorelines to follow. The roads and walk areas are rough, rocky, and people selling anything that you can think of all along the road, crating numerous obstacles. The method encourages using all of ones senses and incorporating the feedback received from the tapping of the cane to identify obstacles and landmarks in the route.

The White Cane First Aid Kit!

Through the White Cane initiative, the team worked with an estimated 165 individuals, providing them a cane and mobility training as well as audio Bibles. Some learned basic mobility techniques to use in training individuals after the team's departure.

The team also showed them how to restore canes. They were excited to be able to fix their own canes and named the kit of materials "The White Cane First Aid Kit." While in Kenya, James also demonstrated the use Aira glasses to many of the blind individuals. This was the very first time Aira was demonstrated in Africa!

Humble Thanks

The team thanks everyone who helped, including the Global Cane Outreach for their assistance in providing the talking Bibles and travel contributions. At the team's debriefing all members felt very positive about the trip. Paul stated, "This project has laid a great foundation for future missions."

The team left feeling blessed to have made so many new friends and to have the opportunity to create life-long partnerships. On leaving Kenya, the team told our new family that this is not a "goodbye," but just "until next time." Further meetings are scheduled with the African Union of the Blind to focus on future efforts.

Additional Links

YouCaneGive.org

You Cane Give on Youtube


Early Warning Signs of Dementia and Its Effects on Vision

Sandra Burgess and her mother sitting together with text reading California 1975

Editor's note: For Older American's Month, Sandra Burgess shares her experiences with her mother's onset of dementia.

Losing Memory Slowly

My mom began to lose her memory very slowly. So slowly, in fact, that it was not terribly noticeable nor was it enough of an issue to cause her or her family any concern. My mom would say she couldn’t think of a word or remember someone’s name. As forgetfulness worsened, she realized something was not the same and talked about her frustration. When a woman from the local chapter of the Alzheimer’s Association visited her and conducted some simple tests, such as having her draw a clock and repeat back a list of words, my mom asked if she could attend a support group for clients. I understand such groups now exist, but back then, my mom was told support groups were only for caregivers.

Alzheimer’s is the most common form of dementia, affecting some fifty million worldwide. Dementia is not a disease; it is a broad term used to denote symptoms of memory impairments that severely disturb the quality of one’s daily life. Alzheimer’s and other types of dementia are diseases of the brain that result in loss of memory, reasoning skills, and thinking. In my mother’s case, she was informed that she didn’t have Alzheimer’s because when she forgot a word, memory pegging resulted in her remembering. For example, if she could not think of the word “ball” in a word list and the examiner gave a clue, such as, “It is round. It can be used with a bat,” my mom would then quickly say “ball.” With true Alzheimer’s, thoughts slip away never to be retrieved.

We never learned what led to my mom’s dementia, though the fact that she had diabetes, high blood pressure/high cholesterol, and a number of mini strokes (also called TIAs) could have been factors.

Early Warning Signs

  • Forgetting new information (important dates, events). This was very common with my mom, who would call to make a doctor’s appointment, repeat the information out loud, and not remember when she went to another room to write it down. Thinking her family would remember what she repeated, she would ask us and we hadn’t always been paying attention.
  • Performing familiar tasks takes longer, or cannot be completed without mistakes (writing checks, following a recipe, remembering how to drive to a familiar place)
  • Difficulty with where they are in time or place: Mom did not know the correct year, or where she was living when she was in a nursing home.
  • Spatial Relationships and Visual Images. Reading, determining distances, color, or contrast may be hard: Mom thought she was positioned to sit on a chair, and ended up on the floor.
  • Current problems with words when speaking or writing: it may be hard to participate in or to follow a conversation.
  • Misplace items and no longer have the capability to retrace their footsteps.
  • Changes in judgment or in making decisions: Individuals may begin to make poorer decisions in dealing with money, such as giving large amounts of money to scam artists. They may also pay less attention to their personal cleanliness.
  • Withdrawing from hobbies, work projects, and social activities
  • Changes in Mood or Personality: When they are in uncomfortable situations, they may easily get upset, fearful, anxious, befuddled, or suspicious.

As mentioned previously, Alzheimer’s and other forms of dementia can cause changes in one’s vision that make everyday life much more difficult. Dementia is a brain disease and the brain works along with our eyes to interpret what we see. Coupled with dementia, many older adults experience vision loss from conditions such as glaucoma, macular degeneration, or retinal damage from diabetes.

Some Examples of Problems That May Occur

  • Mistakes interpreting what they see: the blue floor looks like the sea, or a coat hanging up appears to be a person
  • Problems identifying people by sight
  • Diminished visual field, so there is a loss of peripheral vision while looking straight ahead
  • Trouble seeing contrast between items and backgrounds
  • identifying colors: purple and blue for example
  • Poor depth perception
Learn more helpful tips on caring for someone with dementia.

Additional Resources


TIA (Transient Ischemic Attack)

How Alzheimer’s Disease Affects Vision and Perception

Tips for Caregivers on Reducing Visual Perception Difficulties in Individuals with Alzheimer's

Alzheimer’s Association

ALZwell Alzheimer's Disease and Dementia Caregiver Support

Alzheimer's Society (UK)

Part 3: Relevance of Braille in the 21st Century: A Look at the Scientific Evidence

Scientific Support for Braille and Print

A seated man reading braille

Caption: Man Reading Braille

We started this discussion with an overview post on No Limits--Braille and Print Relevancy. Then in Part 1 of this series, we provided perspectives of braille users concerning the relevancy of braille. Part 2 offered insights from individuals who are sighted about the importance of print in today's world. What does scientific evidence reveal?

Research

Although there has been some research in the past to determine the part of the brain responsible for reading braille, assuming that it's different than reading print, more recent research by Reich, Szwed, Cohen, and Amedi (2012) has found that there is no difference. Once it was thought that the brain was divided into regions specialized for processing information through one sense or another. Although the brain often appears to be a sensory machine, the researchers found that the brain is actually task oriented. "A brain area can fulfill a unique function, in this case reading, regardless of what form the sensory input takes," Amedi said. Previous studies with sighted readers showed that a very specific part of the brain, known as the visual word form area (VWFA) is the portion of the brain utilized for reading print. In the new study, MRI was used to measure neuro activity in eight people, blind since birth, while reading braille. The comparison of brain activity in blind and sighted readers showed that the patterns in the VWFA were indistinguishable between the two groups. As a result, the VWFA should also be referred to as the tactile word form area (TWFA) (Reich et al., 2012).

Planetary Exploration Support for Print and Braille

NASA's latest Mars lander, InSight, touched down on the Red Planet on November 26, 2018. Its purpose is to study what cannot be seen. Like many planetary missions, the lander has a camera calibration target plate. Each plate is adorned with the flags of the countries participating in the mission. But, NASA’s Jet Propulsion Laboratory (JPL) tries to add some creativity to each plate that is launched. This time they chose to spell out "JPL" in braille.

"I was thinking what else could we put on there that could be a kind of code that people in the know could look at and figure out?" said Bruce Banerdt, InSight's principal investigator at JPL. "Braille is another kind of a code, an international code that anybody, anywhere in the world could try to interpret. So we tried putting it on there and it looked cool."

A camera calibration target sits on the deck of the NASA's InSight lander, adorned with the flags of the countries participating in the mission, as well as an easter egg, a message in coded in braille. NASA/JPL Caltech Lockheed Martin Space)

Caption: NASA Braille Message

When InSight landed, it joined NASA's Mars Exploration Rover, Opportunity, that touched down on January 25, 2004. The Opportunity featured a mini-DVD decorated in part with a secret message written in braille, "Explore to learn," seen in photos sent back to earth. It's possible that the Insight and the Opportunity will exist on Mars indefinitely--braille and print, side-by-side messages from earth.

Conclusions

Both my informal research with individuals who are blind and sighted and the scientific evidence show print and braille provide the same literacy needs to blind and sighted users. Both blind and sighted people use audio formats for some learning and recreational activities. So, before we step into the voting booth to cast our ballots for the relevancy of print OR braille, maybe we can take a lesson from NASA: give equal relevance to print and braille and offer all readers audio formats as alternative options. Pens anyone for a write-in vote?

References

NASA's InSight lands on Mars with braille 'easter egg' hidden in sight. Retrieved from http://www.collectspace.com/news/news-112618a-mars-insight-braille-jpl.html

Reich,L., Szwed, M., Cohen, L., and Amedi, A. A ventral visual stream reading center independent of visual experience. Current Biology, Volume 22, Issue 4, 21 February 2012, pp 350-351. Retrieved from https://www.sciencedirect.com/science/article/pii/S0960982211000637


Part 2: Relevance of Braille: Sighted Individuals Discuss the Relevance of Print in the 21st Century

Older man reading with magnifier

Caption: Older Man Reading with Magnifier

In Part 1 of this discussion, several blind people of different ages and backgrounds described various ways they use braille, showing why it is essential to their daily lives. In Part 2, several sighted people describe various ways they use print in their daily lives, showing reasons they could not function without it.

Sighted People Discuss the Importance of Print in Their Lives

Carla Earley

Carla is a sign language interpreter and also home schools her two teenage children, who will give their perspectives later in this post. Carla doesn't hesitate to make her opinion clear with her very first comment. "Honestly, I'd be lost without written things." She admitted that she is not an auditory learner. Print materials allow her to reread and highlight important information, ruminate on what she's read and then reread again if necessary. Another point Carla makes is the ease of scanning and searching large amounts of printed text which is virtually impossible to do with audio formats.

Barb Bookholt

Barb is a retired teacher of children with learning disabilities and trainer of adults. Like Carla, Barb is not an auditory learner. "When I read a book, I underline, highlight, take notes in the margins, turn corners down, put sticky notes on, etc., etc. I am a prolific note taker; I take notes in lectures, classes, sermons, anytime I want to make sure I stay focused on the speaker and remember key points." Barb uses a Kindle to do some of her reading and studying, but she still highlights, rights notes in the margins of her Kindle, and marks words so she can scan through the book and find every location of a specific word. "To think about a world without print boggles my mind and saddens my heart, she concedes.

Debbie Bass

Debbie is a Senior Management Analyst within the state Division of Emergency Management. Part of Debbie's job requires her to write extensive reports on why or why not a building should be used as a hurricane evacuation shelter. For each site, she must build a case, providing evidence for fifteen criteria. She may review and compare up to 250 pages of architectural and engineering plans with what she actually saw at an onsite review. Each piece builds on the next and eventually fits together, laying out the evidence. Although her reports will eventually be summarized into a few pages, her initial reports are often 50 pages. Because this is only part of her job duties, Debbie can be interrupted at any point during the analysis, which can take 3-5 days to prepare. "When I come back, I need to be able to see where I stopped, quickly review and pick things up where I left off," she stated. There is absolutely no way Debbie could do her work using audio alternatives to print.

Beth Perry

Beth is a nurse who works with several pediatricians. Like Debbie her work would be very difficult if not impossible without the use of print. Imagine the confusion and noise in the examining rooms using medical equipment with audio output only. Imagine, how a talking device would pronounce diseases, medications, and patient names. What kind of changes to HIPPA laws would be necessary, if every patient's information was heard in the doctor's office?

Like Carla, Barb, and every sighted participant, Beth stated, "I also remember things much better when I read rather than just listen."

Christie Kimbrel

Christie is retired from the state Department of Law Enforcement but still very active in book clubs, Bible studies, and charitable organizations. Here are some of her comments after recent oral surgery on the convenience of print over auditory means:

"OK. I’m sitting on my couch on this sunny Saturday recovering from oral surgery. From this spot I can see about half a dozen pill bottles on my kitchen counter. All these bottles contain meds that are supposed to make me feel better and heal. They all have directions printed on them. I cannot imagine trying to figure out what I am supposed to take and, when, without being able to read the instructions."

Due to hearing loss and sometimes experiencing difficulty calibrating hearing aids in public situations, Christie says printed copies of what a speaker is saying would amplify her listening. At home, she uses closed captioning when watching movies.

Christie's need for print is similar to my own need for braille. When I attend a class, it's nice to have a braille copy of the PowerPoints. When I attend an opera in Italian or French, it's nice to have a braille copy of the synopsis.

Rebekah and David Earley

Rebekah and David are the teen daughter and son of Carla. They have many individual interests, but share an interest in music and braille. Although their reading and writing media are print, for the past two or three years, they have learned to read and write the braille alphabet and numbers. They have also observed how I use braille on a daily basis. On one occasion under my supervision, they made brownies under blindfold using a braille recipe. As you read Rebekah's and David's list below, keep in mind they have some perspectives on the relevancy of both print and braille:

Problems with Audio Formats Identified by Rebekah and David

  • Knowing where to touch things on the iPad screen. (They should have iPads with Braille screens.)
  • Telling the difference between shampoo & conditioner in the shower.
  • Identifying everything we bring home from the grocery store would be impossible without labels.
  • Remembering the ingredients we need and how much to use listening to an audio recipe.
  • Signing and filling out multiple pages of paperwork at doctor's offices and permission forms for different school activities.
  • Reading music--how would you do that?
  • Learning a different language (especially those that don't have letters like ours!) would be really hard without print.
  • Using audio textbooks with diagrams that explain things.

Beth and Barb also questioned the inconvenience of no street signs and the danger of no traffic signs such as stop, yield, and detour. They felt roads would be chaotic and downright dangerous and getting to work would be difficult at best. They also brought up the much used Google Maps? Note the word "Maps." Yes, Google Maps uses electronics with an audio option, But many drivers use the "map" to check the screen for the upcoming highway exit or road change.

This problem came to pass when the Panhandle of Florida experienced something analogous after hurricane Michael. The environment changed drastically in places, eliminating landmarks and road signs. The lack of visual and written information made it virtually impossible for residents to identify roads or even follow maps.

Concerns Related to Participating in Card and Board Games

Braille Scrabble board

Caption: Braille Scrabble Board

All contributors to this post are all card and board game enthusiasts and expressed the same concerns. Card and most board games involve some form of print on the cards, board, and game pieces. The majority of card games use one or more decks of standard playing cards—52 cards of four suits ace through king with four jokers. How would four people play Canasta, Poker, Bridge, etc. in an audio format whether sighted or blind? The same question can be asked about Scrabble, Monopoly, Chess, Trivial Pursuit, or any other game that relies heavily on written information and spatial orientation and organization.

Conclusions

Although the samples have been small, these are strong, thought provoking arguments for the relevancy of print that would contribute equally well to the relevancy of braille. In several instances, braille and print users gave similar arguments against using audio formats solely. Most contributors, sighted and blind, indicated in some way that they are not auditory learners. In fact, only about 30% of the population whether sighted or blind is truly auditory learners. Additional comments point to other limitations inherent in audio formats. These formats, while helpful for obtaining information from large quantities of text, make it virtually impossible to skim a document or readily locate a specific section of a text, although some devices do allow one to bookmark sections. Audio formats do not communicate and reinforce spelling, punctuation, sentence structure, or literary formats. Also, absent from the argument for audio formats and the elimination of print or braille is a means of writing, communicating with others and oneself. According to the United Nations Educational, Scientific and Cultural Organization (UNESCO), the National Assessment of Adult Learning, and other educational organizations focused on literacy, even though listening and speaking as well as reading and writing are characteristics of learning and communicating, reading and writing are the central characteristics of literacy.

Our final post in this series will look at the scientific evidence of the efficacy of braille.


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