Editor’s note: In honor of Worldwide Week of Service in Sight and World Sight Day, Steve Kelley brings you today’s post, "I’m Not Blind," a story of adjusting to visual impairment. As the world focuses its attention on preventable and unavoidable blindness, we encourage you to reach out to the rehabilitation services and eye care professionals that can help you cope with your vision loss and improve your useful vision.
I’m Not Blind
By Steve Kelley
What comes to mind when you think about blindness? If you feel fearful or anxious about blindness, you are not alone. In a poll conducted by Research!America and the Alliance for Eye and Vision Research (AEVR) in 2014, "Blindness ranked among the top four ‘worst things that could happen to you,’ for all respondents, alongside 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.
My Biggest Fear
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 turned-around or looking for directions, I would have walked over and asked, "May I help you?" My fear of his blindness and the possibility of my own vision loss 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 I imagined it to be.
Several years after this incident, I was referred to a vocational rehabilitation counselor who suggested repeatedly 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 suggestions, 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’ve 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. 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. 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 employers 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 accommodations 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.
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 both 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!."
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 professionals in our field, the vision rehabilitation therapists (VRTs), low vision therapists (LVTs), orientation and mobility specialists (O&Ms), and rehabilitation counselors, work for state or nonprofit agencies for the blind or visually impaired, and many of the individuals who might benefit most from training are not blind!
For those individuals who are not blind, do not have low vision, but instead have a frustrating eye condition that is making it more difficult to read the paper, identify faces, use the computer, or maintain their usual productivity at work, I invite you to ignore the titles of our employers and give us a call by using the VisionAware Directory of Services to locate a professional 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.