Future Reflections Summer 1992, Vol. 11 No. 3
ON BECOMING A WISE CONSUMER OF LOW VISION SERVICES
by Eileen Rivera, M.B.A.
[PICTURE] Eileen Rivera resides in Baltimore, MD with husband, Jeff Foreman, M.D., and a 6-month-old daughter, Maria.
Editor's Note: The following article is reprinted from the April, 1991, Braille Monitor. It is an expanded version of the remarks Ms. Rivera made to parents at the July 1, 1990, Parents of Blind Children Division Seminar in Dallas, Texas. At the time, Ms. Rivera was the Administrative Director of the Wilmer Vision Research and Rehabilitation Center at Johns Hopkins University. Those interested in purchasing low vision services and/or equipment will appreciate Ms. Rivera's sound approach to low vision.
I want to share with you some practical information about low vision. My experience is both personal and professional. I will begin by explaining the nature of low vision programs. Then I will give you some pointers on how to get the best low vision services for your child. But first, let me share with you two conversations I have had with low vision specialists.
Recently one of my favorite low vision specialists at Wilmer related to me a most disturbing experience. After evaluating a middle-aged woman with low vision, she had recommended that the woman learn to travel independently using a white cane. When she relayed this to the referring ophthalmologist, he was irate and retorted, "This is the last time I will refer patients to you! I sent this woman so that you would help her see, not for you to make her blind!" You can see that even the best low vision specialists regularly encounter resistance when advocating nonvisual techniques.
This misguided physician thinks that a low vision technique which uses vision is by definition superior to an alternative no-vision technique, even when the latter is safer and more effective.
I have met low vision specialists who spend hours dreaming up reasons why blind people with residual vision reject traditional low vision solutions. One of the most outrageous explanations went something like this, "I get so angry when my patients insist on calling themselves blind! I tell them, `As long as you can see something, you are not blind!'" But it gets worse. This specialist is convinced that we insist on thinking of ourselves as blind because we enjoy some vague mystical secondary gains of blindness--gains like extra doses of paternalism and custodialism, I suppose. Luckily, this so-called expert does not work at Wilmer.
These conversations underscore the false assumption that our alternative techniques must be either completely visual or completely nonvisual. In reality, many effective systems are not either/or. Each of us, blind or sighted, regularly uses a combination of senses in everyday tasks. Well-informed blind persons with residual vision regularly use this vision when it is convenient and comfortable, which is a fine thing. Nevertheless, far too many legally blind individuals are encouraged to rely solely on vision even when such reliance is uncomfortable and inefficient. Once our low vision blind kids understand their options fully, they will be able to make sound decisions about when and when not to use vision.
Unfortunately many low vision blind people never have the opportunity to learn to make the most of their other senses. Hence they cling to their vision to the detriment of their overall efficiency.
One program at the Johns Hopkins Wilmer Eye Institute is different. When we started it, we began by challenging the notions of the standard delivery of low vision services and are now developing more sensible delivery systems. While the primary goal of other low vision clinical programs is to maximize the use of vision, our goal is to integrate both visual and nonvisual solutions to maximize true effectiveness and independence.
We also began with the realization that, while some of the currently available low vision technology is very good, an awful lot of it is only narrowly useful--too expensive, restrictive and difficult to use. Therefore much of our energy is devoted to designing the technology of the future.
What is low vision? The professionals ordinarily define low vision as best corrected visual acuity below 20/70. The legally blind are only a subset of the entire low vision population. So it follows that not all low vision solutions will be appropriate for our blind kids.
Low vision specialists are trained to evaluate functional vision beyond visual acuity. In fact, visual acuity is only one measure of vision, and an imperfect one at that. While both my sister Mildred and I are highly myopic, with the same visual acuity, we have very different functional vision due to different secondary eye conditions. We respond quite differently to light, glare, colors, contrast, and motion. We do share a high risk for retinal detachments and further vision loss.
Visual field defects or blind spots have profound effects on vision. For example, a blind spot obscuring the central field can make reading impossible, even for a child with an overall visual acuity of 20/70.
Who uses low vision services? Well, the average low vision patient at Wilmer is a sixty-seven-year-old woman with age-related macular degeneration. She has a blind spot obscuring her central vision, and her visual acuity is at 20/120. Her reported prognosis is "better than legal blindness." Her goals are to find a way to write checks and read her phone bill, grocery price tags, and daily paper.
As you approach the low vision system, understand that the majority of patients in any low vision service are senior citizens encountering visual impairment for the first time. Accustomed to functioning visually, they are seeking a quick fix, a way to get by in their later years. These seniors are not seeking to compete effectively with sighted peers at school or work. And even though they might very well benefit from mastering the alternative techniques of blindness, their fears interfere with any prospects of successful rehabilitation.
I have found all sorts of misguided, damaging, and paternalistic attitudes in professional low vision literature of the 1980s. As parents you will want to be aware of the varied thinking in the field. Always ask, "Is this approach best for my child?"
In Irving R. Dickman's book, Making Life More Livable, with all that this title implies, I find extensive material about survival as an older visually impaired person. I read chapters about the need to modify the environment for the visually impaired. Twelve pages are sufficient to address the issues of employment and recreation for the blind. (Rami Rabby, how did you manage to write a 336-page print book on jobs?) In Dickman's book a mere two pages were devoted to the possibility of venturing outside the home as a blind or visually impaired person.
Making Life More Livable offers the following interpretation of life with low vision:
For the two-thirds of older people whose vision has become noticeably weaker, the comforts of home may dwindle: television becomes radio, sewing and hobbies become guessing games, and the joys of cooking become fond memories. [p. 2]
Sharp edges can be lethal, and low coffee tables almost guarantee barked shins or worse.... Strategically placed furniture can help the visually impaired in crossing [the] seemingly vast spaces of an open living room. [p. 11]
For those with the most severe vision problems, home may no longer be the safe haven it used to be. Steps become icy slides, a hallway is a perilous passage.... [p. 3]
Getting through the day can be fatiguing and deeply worrisome, because of the greater amount of energy needed to assimilate visual information. [p. 16]
If the prospects of low vision are so bleak, one has to wonder if it wouldn't be simpler to be totally blind.
As you might expect, Braille and cane travel are barely discussed. Let's examine the alternative techniques which are offered--some of these truly are inferior:
--Use a lighted magnifier to set your stove dial. (Very safe, unless you have hair.)
--Use a magnifier to check the roast for doneness. (The authors obviously never tried this--the lens would instantly steam up!)
--Vary the contrast of your dinner plate with that of your food. (What color plate might one use to serve both steak and potatoes? Should one avoid meals out, or should one just bring along some extra china?)
When evaluating a low vision technique, you must think, how would a totally blind person do this? Most of my blind friends have no problem locating and consuming all kinds of food.
The piece of advice at the top of Dickman's list was for those who bump into doors because they are looking at their feet as they walk: "Have someone remove the door." Remembering to close the door made the bottom of the list.
The book provides all manner of low vision advice on carrying water from the sink to the stove without spilling it, finding and turning on the bedroom light, locating small objects on a bedside table, seeing how much water is in the tub (float a brightly-colored toy in the bath water, perhaps an orange rubber ducky), not scalding oneself, and finding the bath towel, soap, toilet seat, and toilet tissue (color-contrasting of course).
From these examples, one might conclude that common sense is as fleeting as vision and youth. But enough of such nonsense. There are truly good applications of low vision technology, and there are places in the country where low vision specialists are being trained to maximize function rather than vision.
What are the typical low vision devices? They include such optical systems as high-powered reading glasses, magnifiers, telescopes, binoculars, and Closed Circuit Televisions (CCTVs) as well as non-optical devices like bold line paper, felt tip pens, and large print materials, playing cards, games, and checks. At Wilmer we also consider nonvisual items such as long white canes, Braille watches, needle threaders, and talking clocks as low vision devices too. But such an inclusive approach is uncommon in the field.
Who provides low vision services? A number of professionals hold themselves out as low vision specialists. At Wilmer our standard is a doctor of optometry with additional training in low vision. Ophthalmologists are medical doctors who specialize in the health of the eye, prescribe medications, and do surgery. Optometrists, on the other hand, are optical experts. They study four years to learn the ins and outs of lenses and visual function. In my opinion the low vision optometrist is better suited to prescribing optimal lenses and devices for a visually impaired child than is the ophthalmologist. In fact, most ophthalmologists are not interested in providing comprehensive low vision services and prefer to refer their patients to a low vision specialist for that part of their care.
If your child is obviously using vision, seek out a good low vision specialist and begin to develop a working relationship with him or her. It is perfectly natural and acceptable for your child to use residual vision, as long as it is comfortable and effective. Blind children with usable residual vision should have a low vision evaluation every few years. Through such an assessment one can begin to learn about existing optical systems that make using vision more comfortable. Since a low vision evaluation requires extensive participation on the part of the child, he or she must be old enough to articulate personal preferences and needs. A typical work-up can take hours, but the better specialists will customize the evaluation to match a child's attention span.
Parents should prepare for the low vision exam. Plan to be involved in all stages of the evaluation. Begin observing your child's visual function. What can he see? How and when does she use vision? Does he squint? Note reading endurance and typical working distance. Such information will complement the clinician's visual assessment. Remember to assure your child that the exam will not hurt.
In an evaluation, the specialist will usually assess reading, writing, distance viewing, mobility, and lighting. By defining concrete tasks or goals to be performed visually, parents can help the practitioner tailor the evaluation to the child. Some examples of goals include checking a price tag in the store, studying a road map, analyzing a graph, reading the ingredients on a cereal box, sorting mail, finding a phone number, and viewing a landscape or chalkboard.
Usually the specialist will explore the optical alternatives first. Be wise consumers. Feel free to ask candid questions about the practicality of any suggested techniques. For example, some practical advice for lighting at home might be offered, but ask for a plan of action for times when lighting is not ideal or controllable.
Children with progressive diseases may find low vision services frustrating since prescribed devices may become ineffective in short order. In such cases parents should evaluate whether time and resources might be better spent in refining nonvisual skills such as typing, Braille, and cane travel. These solutions will last a lifetime.
Feel free to ask questions along the way. Ask for an explanation of how vision will change as your child matures. Ask about the significance of presbyopia on low vision blind kids. This is important since most low vision children depend so heavily on their ability to focus up close.
Give the clinician permission to be frank. Very often, low vision specialists feel pressured into encouraging purely visual techniques in order to avoid resistance from the child, parent, teacher, or referring ophthalmologist.
Dr. Gary Rubin, one of my colleagues at Wilmer, studies the performance of low vision readers. His research indicates that a person must see a minimum of four characters at a time in order to read at all fluently.
A trained low vision specialist will systematically evaluate reading by measuring reading speed and accuracy at different print sizes and documenting the print size of the last good reading. Having determined the optimal print size, the specialist will select a magnification system which converts actual print size to the optimal size. (Incidentally, at Wilmer, we are currently developing a computerized testing system which will facilitate and significantly speed up this reading evaluation.)
Low vision reading devices are rather task-specific. One may need a number of different devices to read assorted print sizes. In prescribing a reading device, the practitioner must balance the tradeoffs among print size, field-of-view, and working distance. The stronger magnifiers require the eye to be less than one inch from the lens, a less than comfortable position for sustained reading. Powerful magnifiers also tend to have a small field of view and so can enlarge only a few characters at a time. These constraints reduce reading speed.
Beware of the quick fix. A vision teacher might insist upon a low vision exam in hopes of finding some reading device that might save her from having to teach Braille. If your child is significantly visually impaired or is legally blind, insist on Braille now. There is no effective substitute. Even if Braille is the secondary medium now, it will likely serve as an excellent resource in later years, as print size diminishes and reading requirements increase.
Think carefully about the long term visual functioning of your child. Endurance is perhaps the most important factor in determining an optimal reading system. The progressive nature of the disease must also be considered. Will a low vision optical system meet all future career needs?
Rarely will a low vision device enable one to curl up comfortably with a book and read for hours. If the only way your child can read is by holding a book up to her nose, chances are that the reading system will become more cumbersome and inadequate as she matures. This is true even when the visual condition is reported as stable. Start now to identify nonvisual alternatives. It's a tragedy to find so many low vision blind students dropping out of high school and foregoing college. I have observed that partially sighted kids lacking Braille skills are more likely to quit school than are their totally blind Braille-reading classmates.
Low vision consultations usually result in a series of recommendations based upon the predetermined goals. The better low vision optometrists will provide you a shopping list of choices, usually ranging in price and effectiveness. The very best clinicians will be ready to explain the pros and cons of specific systems and will introduce nonvisual options as well. If the information is not offered, ask questions.
Don't expect the average optometrist to be well informed about nonvisual techniques. Such professionals did not study optics for four years to spend their time talking about non-optical systems. Still, ethically, they should be realistic about the ease of use, practicality, and comfort level of a prescribed device.
Consider the ergonomics (the working conditions) of a device. Ask about headaches, back pain, and eye strain. Understand the field-of-view limitations and required lighting conditions. Think about portability. (Currently available CCTVs are barely luggable.) Ask them how much practice one needs to use a system effectively. Is the investment warranted? Ask about the usefulness of the device as vision declines.
Finally, one must consider the economics. How much are you willing to spend? Can the school system or vocational rehabilitation agency purchase the recommended device? They can usually be persuaded to cover expenses for items used in class.
You might say that I am a classic high partial. I have had a visual acuity of about 20/200 since birth. As a low vision blind child, I was never introduced to essential nonvisual skills. My mobility lessons (if you can call them that) consisted of vision training, tricks to distinguish between the sidewalk and the grass. I was encouraged to watch my feet as I walked. Equipped with these fine travel skills, I never ventured far from home. Braille was never discussed. Hence I am playing catch-up as an adult.
Today I use a number of practical low vision devices on the job. I also have a drawer-full of useless gadgets prescribed for me in my youth. Perhaps my best low vision device is a pair of soft contact lenses. A long white cane enables me confidently to come and go as I please. My computer with large print display and capacity to produce large print text is a valuable tool. And a pair of sun filters help eliminate bothersome glare--all good things. Perhaps my favorite low tech low vision aid is a tinted piece of plastic which reduces glare when placed over a printed page. All of these are fine tools.
Would you like to hear what is in my reject drawer? Several pairs of reading glasses, prescription sunglasses, and a spectacle-mounted telescope. I never found much use for magnifiers because of the restrictive field of view and their annoying optical distortions.
The fact that these items don't work for me doesn't mean they are not helpful for others. The selection and use of low vision devices are highly individual. The best way to identify useful devices is to have a comprehensive low vision evaluation. A good service will allow one to borrow a device to test at home. Of course, this may not be possible with custom-made items. Remember that visual goals change as does technology, so plan to return every few years to see what's new.
Telescopic lenses are big-ticket low vision devices. Telescopes definitely work. Many people with low vision keep a telescope handy for occasional spotting tasks, but I know very few who enjoy using them for extended viewing. My visual acuity improves significantly through a telescope of perhaps 20/80. However, this is only through a twelve-degree field-of-view, so there are tradeoffs.
Some commonly recommended applications of telescopes are reading a street sign or checking a traffic signal. I find it quicker to ask a stranger the street name rather than to search for the sign through the telescope. If the sun is too bright or too dim, I have difficulty reading the sign even after I have located it. I sometimes feel awkward and vulnerable standing at an intersection using both hands to focus my telescope. My fear is that someone might snatch my pocketbook while I am off guard. Listening for oncoming traffic before crossing is definitely more reliable than depending on the color of a traffic signal. Telescopes are also recommended for viewing the blackboard or watching a play. I have tried to use a spectacle-mounted telescope in the classroom. For the first time ever, I could see the writing on the chalkboard! But, as I worked with the telescope, I became so absorbed with scanning, focusing, and copying the board material that I was missing the professor's entire lecture. After a two-month trial, I decided that using the telescope in this way was too fatiguing and actually interfered with my learning, so I returned to other alternative techniques.
Low vision enthusiasts recommend telescopes for extended TV viewing and watching sports events. I also find this draining. I do enjoy using the telescope to examine the costumes of a cast in a play, but then I usually forget about the telescope and enjoy the show.
Some professionals will blame this lack of enthusiasm for telescopes on insufficient vision training. But the way I see it is that the fact that vision enhancement is technically feasible doesn't automatically make it a good idea. Encourage your kids to keep their low vision tools in perspective; make sure they have other alternative skills from which to draw. This way they can have the best of both worlds.
When seeking low vision services, remember that some low vision specialists will encourage your kids to use vision at all cost. Remember that visual and nonvisual techniques need not compete. They should complement one another. By understanding the bias of the professionals, you can make the best, most informed decisions for your low vision blind child now and for the future. Above all else, trust your instincts!
Finally, let me comment on working effectively with your eye doctors. Many of them confess that they feel comfortable only when dealing with eye disorders and the health of the visual system. To them, blindness is a personal failure. After all, their careers are devoted to preventing and arresting blindness. This is their bias and expertise. The majority of physicians lack any specific training in advising blind patients. They feel unprepared to discuss vision loss with their patients. Furthermore, since ophthalmologists spend most of their energies on newly diagnosed visually impaired persons who lack any training and self-confidence, they understandably form erroneous conclusions about the helplessness and hopelessness of the blind. They know almost nothing about the alternative techniques and strategies used successfully by the blind.
While ideally we would like all physicians and optometrists to be fully informed about blindness and to think beyond purely visual solutions to truly effective and efficient ones, we must be prepared to make the most of their current knowledge base--knowledge about vision and the physical workings of the eye. However, we must reach further. We must devote more energy to befriending and educating these important eye care professionals. By introducing them to competent and well adjusted blind persons, we can teach them where to turn with questions or for advice. We must begin to reach out to our eye doctors now, for our good, for their good, and for the good of the next generation.