by Sean Ziadeh
From the Editor: Sean Ziadeh is a relatively new member of the National Federation of the Blind of Illinois. As he relates in the following article, he knew he had a problem before the medical profession did, and, once they understood that they could not give him back his lost vision, they were done with him. We have heard this story many times, and the problem for most blind people is, not that they have been told that their vision can’t be restored, but that they are shown to the door with no discussion of resources, no examples of successful blind people, and no instructions about where to turn for information and inspiration. Here is how this story played out in Sean’s life:
I was eight years old when it became apparent that I had a vision problem. Our family eye doctor was puzzled. He could not detect an issue with the eye. Based on my reading of the eye charts, however, he claimed that I should not be able to see an eighteen-wheeler coming down the street. He could not reconcile his test results with my mother’s testimony that I rode my bike throughout the neighborhoods, played video games, and was an avid racquetball player. His conclusion: I must be lying about what I could see to gain special attention from my parents.
Unwilling to believe my poor vision was an elaborate hoax for attention, my mother took me to various vision specialists. For the next three years I was drawn out of school for an array of tests--everything from having probes attached to my temples, to immobilizing my head before a monitor for hours at a time, to CT scans. Often my mother dealt with a young child frustrated by having to go to another appointment. I did not understand what they were doing to me; all I knew was that I wanted it to end.
I was about thirteen years old when my parents and I received the definitive answer from a neuro-ophthalmologist. I was diagnosed with congenital optic nerve atrophy. Basically there was little function in my optic nerve, which conducts signals from the eye to the visual cortex in the brain. The bad news was that I am legally blind. The good news was that this specific cause of my low vision should not get worse. The low-vision specialist remarked that we must be happy to have a diagnosis finally. He then uttered what may have been the most unfortunate words. He wished us luck and directed us to the check-out window.
After all the years of uncertainty and unpleasant tests, we were left with nothing more than a diagnosis and a final farewell. For the next few years I struggled to get through school as the amount of reading increased and textbook fonts decreased, aided by nothing more than drugstore-purchased magnifiers. My grades were very poor, in significant contrast to those of my two older brothers, who excelled in their studies and extracurricular activities. For my part, not much was expected. I was just different.
As so often happens in life, coincidence and plain luck finally brought me some hope when I was approaching the latter part of my junior year in high school. For reasons I cannot recall, I was in the school library, which I seldom visited since reading was not my favorite task. It just happened that the regular school librarian was sick that day, and the substitute librarian was a former employee of the Michigan Commission for the Blind. When she saw me struggling to read, she approached me and asked what the problem was and whether she could help. I could explain very little since little had ever been explained to me about my condition.
This kind woman requested a meeting with my parents. She asked several questions regarding my condition and what assistance I was receiving, which was none. This was before the Internet and Google made researching medical conditions and available resources much easier. She was concerned and upset that we were not notified about the services and organizations available for the visually impaired and their caregivers. She made certain that for my final year of high school I would receive large-print books and become a client of the Michigan Commission for the Blind. Although there was some delay in my receiving the large-print books at the beginning of my senior year, I was admittedly excited about my ability to read assignments quickly and more accurately than I had been able to do with the drugstore magnifiers. This improvement was reflected in my grades as well.
My grade point average before large-print books hovered around 2.0. My grades quickly rose to over 3.7 my final year. I also recall taking a national standardized chemistry test during my senior year, which was offered in large print. I scored in over the 90th percentile, and I did not even enjoy chemistry. Being impressed by my academic achievement once I had been provided with some accommodations for my vision, the University of Michigan in Ann Arbor accepted me into its undergraduate program.
My grades improved significantly once large-print text books were provided. However, I might have leveraged other skills and accommodations if only they had been offered. A closed-circuit television, audio books, reader services, cane travel training, and screen-magnification devices could have helped me. Rehabilitative services would have introduced me to these items and many other skills useful for the blind and visually impaired much earlier in life.
I sometimes wonder what would have happened if I had not entered the library that day in high school and had a chance encounter with a former Michigan Commission for the Blind employee. I predict I would not have earned a bachelor’s degree from the University of Michigan and then go on to receive both a law degree and an MBA from Michigan State University. In fact, I have no idea what would have happened to me at all.
One thing is certain: too often a significant gap in our health care system occurred for ensuring that individuals diagnosed with legal blindness or visual impairments are properly and expeditiously directed to rehabilitation services. Patients would be better served and their difficulties might be mitigated if rehabilitation occurs soon after diagnosis. Vision specialists are on the front line in suggesting opportunities to address the functional and psycho-social ramifications of living with low or no vision. Steps must be taken to ensure that all those newly diagnosed with visual impairments are headed in the right direction for available resources. Personal experience and conversations with other legally blind friends and colleagues suggest that little if any direction is being given to patients.
Theories offered for this lack of direction include: It is not the role of low-vision specialists to prescribe rehabilitation services. Their duty consists of making the diagnosis of the vision impairment, and no more. Another possibility is that doctors feel personal and professional failure when they cannot correct vision deficiencies. It is as if what they cannot cure, they will ignore. Other explanations for why low-vision specialists are not ensuring a seamless transition from diagnosis to rehabilitation may exist. However, understanding the motives of the vision specialists is of less importance than trying to change this tendency.
To influence change in the profession, low-vision specialists should consider this statistic: in 2011 the unemployment rate among the visually disabled was as high as 73 percent, depending on the location within the United States. These people were twice as likely to be below the poverty line.1 Half of people with a visual impairment suffer from alcohol abuse, and 35 percent experience drug abuse.2 More than a third of blind and visually impaired people may suffer from depression3 and face an elevated risk for suicide.4
If made aware of these secondary diagnoses, the professionals diagnosing the onset of low vision or blindness would likely try to do more for their patients. If not, an argument could be made that these doctors are violating the spirit of the Hippocratic Oath, vowing to do no harm. Unfortunately it appears the practice of leaving their patients without advice on rehabilitation opportunities continues. In a recent visit to my low-vision specialist in January of 2013, I inquired about this issue. It was her opinion that, once she makes the determination of legal blindness, it is the responsibility of school districts to provide the necessary accommodations.
Problems exist with this position, however. She did not elaborate on the accommodations that she might recommend or agencies that might help ensure that necessary accommodations are actually provided in a timely manner. And, if the patient is not of school age, she might not make any suggestions for rehabilitation at all. Even more important, providing accommodations for performing well in school does not address the many psycho-social and emotional aspects of living as a blind or visually impaired person, particularly at the time of the first diagnosis.
It is time for a change. Advocates for the blind and visually impaired must call upon low-vision specialists to direct their patients to crucial rehabilitation services. This could help patients face the new challenges of living with low or no vision and live a more fulfilling, independent, and productive life. Bringing awareness to the professional organizations or associations these doctors belong to is a start. Approaching state legislatures may be another avenue to follow, leading to implementation of public policy requiring counseling about rehabilitation options once a diagnosis is made.
A consultation as short as ten minutes and the provision of pamphlets to the patient or parents of the patient may go a long way toward improving the outlook for the patient. The key to such consultations is emphasizing the importance of rehabilitation and the negative impact vision loss may have on an individual if proper post-diagnosis measures are not taken. The financial expense of providing such direction is minuscule, but the devastating costs to the patient lacking necessary services after diagnosis may be immense. So what can we do to effectuate this change? It is an issue too important to be ignored any longer.
2. Alcohol and Other Drug Abuse as Coexisting Disabilities: Considerations for Counselors Serving Individuals Who Are Blind or Visually Impaired, Koch et. al. (2002), accessed at <http://www.360translations.com/educ533/blind.pdf>.
3. Cardiff researchers study blindness and depression link, BBC News Wales, September 24, 2011 accessed at <http://www.bbc.co.uk/news/uk-wales-15042096>, last visited February 14, 2012.
4. Reported Visual Impairment and Risk of Suicide: The 1986-1996 National Health Interview Surveys, Lam et. al., JAMA Ophthalmology, July 14, 2008, Vol 126, No. 7 accessed at <http://archopht.jamanetwork.com/article.aspx?articleid=420638#ref-eeb80001>, last visited February 14, 2013.