Editor’s note: The American Foundation for the Blind (AFB) is conducting a research study seeking U.S.-based adults 55 and older who are experiencing changes in their vision. The aim of the study is to understand what it’s like for older adults to adjust to vision changes and what services can help them. To support this initiative, APH is sharing information about this study as part of this blog post. Steve Kelley, Peer Advisor, talks about his experience losing his vision later in life. More information on the AFB study is at the end of this post.

What Do you Think About When You Think About Blindness?

What comes to mind when you think about blindness? If you feel fearful or anxious about going blind, you are not alone. In a poll conducted by Research!Americaand the Alliance for Eye and Vision Research (AEVR) in 2014, blindness was rated among the top four ‘worst

things that could happen to someone for all respondents, right beside cancer, Alzheimer’s disease, and HIV/AIDS.

It stands to reason then, if you have recently been diagnosed with age-related macular degeneration, glaucoma, diabetic retinopathy, or any other disease that may result in progressive or sudden loss of vision, you may be even more anxious or fearful of blindness and what it will mean for you! Instead of motivating you to seek guidance or resources, the fear of losing your sight may prove debilitating.

Fear of Blindness After Diagnosis

Twenty years ago, not long after being diagnosed with a progressively degenerative eye condition, I was in the Boston Museum of Science. From across a crowded room, I spotted a man in the corner with a long white cane. My immediate assumption was that he was lost, unable to find his way out of the corner, and that I too was destined to be lost without my vision. I was paralyzed with fear, grief for this man’s blindness, and the unknowns of my own impending vision loss.

To this day, I am embarrassed to recount this story. If it were anyone else, someone without a white cane, who appeared loss. I would have walked over and asked, “May I help you?” My fear of his blindness and the possibility of my own vision decrease prevented me from doing so. I am also embarrassed to acknowledge that my first assumption was that he was lost. At the time, it was just inconceivable to me that his white cane was a way-finding tool and not some symbol of disability. like I imagined it to be.

Declined Blind Rehab Services

Several years after this incident, I was referred to a vocational rehabilitation counselor who repeatedly suggested that I consider a referral to the state’s association for the blind and visually impaired for training and a technology assessment. As I did with his previous recommendations, I declined the referral because after all, “I wasn’t ‘blind’ or visually impaired. I was just a guy with a frustrating eye condition that made it difficult to see the computer screen and continue to perform efficiently at my job.

Eventually, the referral was accepted, but it took losing a job working with computers that I loved and a period of unemployment to finally convince me to reach out to the association for the blind for that additional training.

What I’ve Learned About Vision Loss in My Career

That referral ultimately led to my current career as a certified vision rehabilitation therapist (CVRT) and rehab counselor (CRC), following some years of graduate school and professional development.

In this role working with clients who have varying degrees of vision loss, I’ve observed that individuals who have had vision loss from birth or a very early age, also known as congenital vision loss, are often more adjusted to their visual impairment than those with a newly acquired loss or recent diagnosis.

Like most generalizations, this isn’t always the case. It varies greatly among individuals, but it will help make the point that follows: many individuals with a visual impairment acquired later in life do not identify themselves with blindness, low vision, or visual impairments. Part of the reason may have to do with the fact that, for years, vision loss or reduced vision was not part of their identity at all — unlike those individuals who always had some type of vision loss.

To further prove my point, another recent study showed that people over 55 often do not identify as having a disability, even if they are having problems with seeing or hearing. The “Experiences of disability after 50 Poll” showed that people’s self-identity and help with health care visits could cause them to miss out on potential accommodations.

Little Exposure to Blind People

Another contributing factor may be that many of us have a great deal of anxiety and fear around blindness and often have very little exposure to individuals with vision loss (Read  author, Rosemary Mahoney’s essay, Why Do We Fear the Blind). As a result, we have no clue, for example, that a long white cane is a tool for navigation; computers offer text-to-speech and screen magnification for low vision users; most states permit the use of bioptic glasses for driving with low vision; or that employers do routinely make accommodations to secure and retain qualified staff who have low vision or blindness. As the saying goes, “we don’t know, what we don’t know.”

In many instances, it seems that the greatest challenge for an individual losing vision has less to do with the accommodation and more to do with accepting the changes in their vision and embracing alternative methods of daily living skills such as reading print, using the computer, or getting from here to there.

A Change of Perspective

At a recent professional conference for the Association of Vision Rehabilitation Therapists (AVRT), I was reminded of my paralysis and fear from years ago as I participated in conference events with many professionals using long white canes, guide dogs, and sign language interpreters for those individuals with a hearing loss. I realized what a dramatic and powerful shift in perspective I’d gained over the years working with executives, students, administrators, counselors, researchers, and other professionals of all types who I’ve observed moving gracefully and efficiently through both their professional and social lives with reduced vision or blindness.

To suggest that there is no reason to feel anxious or fearful to someone experiencing vision loss would be inaccurate and insensitive. A visual impairment will bring changes to their lives, profound challenges at times, moments of intense frustration, and ultimately the determination to relearn those tasks we all take for granted — like getting to the grocery store or reading print.

It is not an easy transition, but it can be managed so much more effectively with less of the cultural stigma and fear many of us hold about blindness. A co-worker once said to me prior to a presentation we were giving on assistive technology, “I don’t know how I’d manage to do what you do — having vision and then losing some of it! I’ve always been blind. I’ve always used the computer the same way with a screen reader. I can’t imagine having to change the way I use a computer as an adult. It would be very difficult!”

Where Are the Low Vision Referrals

One of the conversations that comes up repeatedly at professional conferences is “Where are the referrals? Where are the clients with low vision, and why aren’t they stepping forward to seek training?” Most of the vision rehabilitation therapists (VRTs), low vision therapists (LVTs), orientation and mobility specialists (COMs), and rehabilitation counselors in our field, work for state or nonprofit agencies for the blind. Yet many of the individuals who might benefit most from training are not ‘blind’ and don’t understand that there are services that can help them.

If you are blind, have low vision or a frustrating eye condition that is making it more difficult to read the paper, identify faces, use the computer, or maintain your usual productivity at work, I invite you to ignore the titles of the agencies that say “for the blind or for the visually impaired” and give a service agency a call. You can use the Older Individuals who are Blind  Directory of Services  to locate an agency near you. There is often little to no out-of-pocket cost for these services, and you may be pleasantly surprised at how many of your favorite activities can still be enjoyed with less vision than you once had.

Share Your Vision Loss Story

As noted in the beginning of the post the American Foundation for the Blind (AFB) would like to talk to you about your experiences. AFB is conducting a research study seeking U.S.-based adults 55 and older who are experiencing changes in their vision. The aim of the study is to understand what it’s like for older adults to adjust to vision changes and what services can help them. Participants can choose between a 60-minute interview and a 90-minute focus group, either in person or virtually. Transportation support will be available for in-person sessions, if needed.

Interested? Please call AFB researcher Angie Whistler at 202-469-6834 to sign up.

If you have any questions or concerns about the study, contact the principal investigator, Dr. Arielle Silverman, at [email protected]