Living with Low Vision: Insider Perspectives

Living with Low Vision: Insider Perspectives

The webinar features three adults with progressive vision loss sharing how they received their diagnoses, adjusted their work and daily lives, and developed ways to cope. Their experiences differ, but they emphasize that adjustment is an ongoing process: people may grieve, adapt, and seek new support more than once as their vision or circumstances change.

Panelists’ experiences

• Amy Bovaird noticed increasing difficulty seeing in the dark while preparing to teach overseas. After learning she had retinitis pigmentosa (RP) and would eventually lose her sight, she initially withdrew and felt frightened. She chose to continue teaching abroad and spent many years adapting informally. When declining vision began affecting her teaching and mobility more substantially, orientation-and-mobility training and using a white cane helped restore her independence. She later shifted from classroom teaching to writing and speaking.
• Becky (Beckie) Horter was highly nearsighted, but her vision continued to worsen. Degenerative myopia caused central vision loss, first in one eye and later the other. She eventually stopped driving and left proofreading work when the tasks became too difficult. Trying low-vision equipment involved trial and error; some devices helped in certain situations but not others. Family support, writing and journaling, humor, and allowing time to adjust helped her move forward.
• Audrey Demmitt first noticed vision changes in her twenties and received several different diagnoses before specialists identified an atypical form of RP. She continued working as a nurse, adapting her roles as her vision changed. With vocational rehabilitation support, she used tools such as magnification equipment at work. She eventually left a school-nurse role when she could no longer safely respond to emergencies. She now uses a guide dog, supports others through peer work, and describes feeling more empowered by the skills she has gained.

Main ideas and lessons

• A diagnosis can be emotionally overwhelming. Panelists described shock, denial, anger, grief, depression, fear, and uncertainty. They also stressed that adjustment is not necessarily linear: difficult feelings may return when vision changes or a new life transition occurs.
• There can be life after vision loss. Life may change substantially, but it can still be meaningful and fulfilling. Panelists spoke about discovering strengths, pursuing different work, raising families, caring for grandchildren, and helping others.
• Adaptation often happens in stages. Some people manage for years with informal workarounds before needing services or specialized equipment. Later changes may call for new training, technology, mobility strategies, or career decisions.
• Tools and training can increase independence. Amy’s experience with a cane illustrates that using a visible mobility aid need not diminish independence; for her, it helped restore it. Audrey’s work accommodations and Becky’s experiments with devices likewise show the value of finding tools suited to specific tasks.
• Mental health support matters. Counseling, peer groups, reflective exercises, and other forms of support can help people work through the emotional effects of vision loss. Participants noted that rehabilitation services may focus on practical needs, so people may need to seek emotional support separately.
• Self-advocacy can be tiring. People with vision loss may repeatedly need to explain what they need or request accessible formats. The panelists recommended setting boundaries, pacing oneself, choosing which issues to address, and remembering that it is not necessary to educate everyone all the time.
• Humor and perspective can help. Panelists described using humor to cope with mishaps and reduce the emotional weight of difficult situations.
• Self-worth supports self-advocacy. Accepting and valuing oneself can make it easier to ask for assistance and access. Panelists emphasized that people with vision loss have a right to participate fully in public life.
• A changed path can still be fulfilling. Several panelists had to revise career plans or other expectations, but found new ways to use their skills and interests.

Practical approaches discussed

• Take adjustment one step at a time. Make changes as they become necessary rather than assuming everything must be solved immediately.
• Seek qualified help.
  • Ask about orientation-and-mobility training when getting around becomes difficult.
  • Consult a low-vision specialist before buying magnification devices; different activities may require different tools.
  • Contact vocational rehabilitation or other local services for workplace assessments, equipment, and accommodations.
  • Consider counseling or a peer support group when grief, anxiety, or depression becomes difficult to manage.
• Experiment with tools and techniques. Equipment that works for stationary viewing may not work for moving targets, reading long passages, or other tasks. Trial and error—and training in how to use a device—can be important.
• Review accessibility settings. The panelists suggested experimenting with features such as larger text, color inversion, screen readers, and magnification. They also noted that a smartphone can provide useful functions, including magnifying text or objects and accessing audiobooks.
• Use workarounds where helpful. Examples included checking restaurant menus online in advance, using audio for reading, and finding alternate ways to receive information from meetings.
• Allow extra time and energy. Many tasks take longer with vision loss. Panelists recommended adjusting expectations, pacing activities, and giving oneself grace.
• Explore Braille if it fits personal needs. Panelists described using Braille for labels and identification, while noting that people make different choices about learning it and may find it useful even without becoming fast readers.
• Consider peer support. Support groups can offer practical ideas, encouragement, and examples of how others have adapted. Virtual groups may be available through local agencies, consumer organizations, or online communities.

Resources mentioned

• APH ConnectCenter and VisionAware: The presenters recommended VisionAware’s Getting Started Guide, articles about low-vision devices, information on lighting and glare, blogs by people with vision loss, and a directory of services. The APH ConnectCenter information-and-referral line was 800-232-5463; its website is aphconnectcenter.org.
• Low-vision specialists: Recommended for guidance on choosing appropriate devices rather than purchasing a magnifier without an assessment.
• Hadley: Mentioned for low-vision learning materials. Audrey also discussed the course Self-Esteem and Adjusting with Blindness. She said the course was no longer offered in its former format, but the book was available through the National Library Service for the Blind and Print Disabled (NLS) talking-book collection.
• When You Can’t Believe Your Eyes: Recommended as a practical guide for adults encountering vision loss.
• Mississippi State University: Mentioned for learning materials for people who serve older adults with vision loss.
• American Council of the Blind (ACB) and National Federation of the Blind (NFB): Cited as organizations with state affiliates, meetings, and groups, including virtual offerings.
• Other support options: Local agencies, Facebook groups, and Covia Well Connected were mentioned as possible sources of virtual peer support or activities.
• Amy Bovaird’s books: Mobility Matters: Stepping Out in Faith and Cane Confessions: The Lighter Side to Mobility were discussed. She said they were available through Amazon and audiobook outlets.
• Braille webinar: Melanie referred viewers to an earlier APH webinar about whether to learn Braille as an adult, available in the organization’s YouTube playlist.
• Becky’s writing: Becky mentioned an article about her adjustment experience, which the hosts said was available through VisionAware.
• Audience member’s book: Roseanne described writing Rozanne Travels to Africa to Kiss a Giraffe, based on her wildlife trips.

Speakers and sources featured

Hosts and presenters

• Melanie Pesco — webinar host and VisionAware website co-lead
• Chris Rogers — co-host and presenter introducing panelists and resources

Panelists

• Amy Bovaird — author, speaker, and VisionAware peer advisor
• Audrey Demmitt — nurse and VisionAware peer advisor
• Becky/Beckie Horter — writer and VisionAware peer advisor

Audience members who spoke

• Roberta McCall — asked about the Hadley course and NLS availability
• Cheryl — asked about learning Braille as an adult
• Rita — asked whether vision loss had changed or enriched the panelists’ lives
• Roseanne — asked about helpful iPhone features and described her children’s book

Organizations and resources cited

• APH ConnectCenter and VisionAware
• Hadley
• National Library Service for the Blind and Print Disabled (NLS)
• Mississippi State University
• American Council of the Blind (ACB)
• National Federation of the Blind (NFB)
• Covia Well Connected
• Local vision rehabilitation and vocational rehabilitation services
• Mobility Matters: Stepping Out in Faith and Cane Confessions: The Lighter Side to Mobility by Amy Bovaird
• When You Can’t Believe Your Eyes
• Self-Esteem and Adjusting with Blindness
• Rozanne Travels to Africa to Kiss a Giraffe by Roseanne