American Action Fund for Blind Children and Adults
Future Reflections Winter 2017 PERSPECTIVES
by Edward Bell
Reprinted from Blog on Blindness, <blog.pdrib.com>, March 21, 2015
From the Editor: Dr. Edward Bell is the director of the Professional Development and Research Institute on Blindness (PDRIB) at Louisiana Tech University in Ruston, Louisiana. He holds a PhD in rehabilitation education and research from the University of Arkansas, and he holds certificates in orientation and mobility (O&M) and educational statistics and research methods.
Significant vision loss and the thought of pending blindness are among the most fearful horrors a parent may face. The thought that your child may lose more vision is frightening; the prospect of him growing up and becoming blind may seem a fate worse than death.
How will he work? Who will take care of him? How will he be able to live a normal life? Will he ever find happiness?
We would do almost anything to help our son or daughter regain normal sight . . . we'd even go so far as to give up our eyes if that would prevent our children from becoming blind.
The statistics are depressing. Upwards of 60 percent of blind adults are unemployed; the majority of youth with visual impairments do not obtain full literacy or achieve success in college <http://www.pdrib.com/downloads/Factors%20that%20Contribute%20to%20the%20Success%20of%20
The worse one's sight becomes, the worse can be his or her prospects for living a normal life. It seems that becoming a beggar on the streets, being locked away in a sheltered sweat shop, and living a life of destitution and despair are near certainties.
Parents often ask:
We'll go to any length, spare no expense, work our fingers to the bone, and stop at nothing to save our child from becoming blind.
The purpose of the rest of this article is to provide the help you have been seeking. I am here to bring you some good news, some bad news, and—most importantly—the truth.
Why do we always start with the bad news? I guess we do it to get the worst over with quickly. The bad news is that you are already doing or have already done most of what you can do for your child's eyesight. If your child has seen an ophthalmologist, then, most likely, everything has been done that can be done right now.
Will blindness ever be cured? How many more years until we can reverse impending vision loss? How can we stop the progression of eye disorders?
Unfortunately, the best experts in the world can't provide accurate answers to these questions. This is the bad news, and this is the truth. I wish I could offer you a teaspoon of sugar or some way of making this easier to swallow, but the facts must be faced. If they are not, your child will suffer for life.
I do not know, and cannot know if there will ever be a cure for blindness. I do know that I was told twenty-two years ago that blindness would be cured in about twenty years . . . I am still waiting.
What I do know with absolute certainty, however, is that every hour, every day, every month, and every year that passes in search of the cure is precious time that is slipping away, and that's time that cannot be put back into a bottle.
So, is all hope lost? No, not just yet.
Now that the bad news is done, let's move on to the good news and the truth. The reason that I save the good news until later is so we can actually do something positive, useful, productive, and promising. We are so continuously bombarded with negative and discouraging information about blindness, what good news can there possibly be?
If you listen to the following information (I mean really listen, with your heart, your mind, and your soul, absorb it, try it, test it yourself, swallow it, and embrace it) your life and that of your child will begin to brighten immediately. I don't know if this is the cure that you were hoping for, but it is what I can offer. This treatment for blindness is closer at hand than the cure currently being offered by the medical community.
The following information is based on more than one hundred years of combined professional experience, enlightenment, research, and practice. It is virtually guaranteed to ensure that your child does not grow up to be blind.
In order to prevent your child from growing up to be blind, you must first deal with the huge elephant that is standing in the corner, stinking up the room and making life unbearable. That elephant is blindness, the "B-word," a fate worse than cancer. Yes, "blind" is the very word itself that causes fear in our hearts, depression in our souls, doubts in our minds, and certainty that the future is bleak.
Have you ever asked yourself why blindness is so fear-evoking? Certainly, if we walk around with our eyes closed, it will be scary. We will bump into things, get disoriented, and feel helpless. Just the thought causes goosebumps, shivers, trepidation, and feelings of despair.
But is that really what it is like to be blind?
President Franklin D. Roosevelt was famous for saying, "The only thing we have to fear is fear itself." This, I submit, is equally true regarding blindness.
Now, let me be crystal clear. Let me illuminate the subject, bring a bright light to the matter, and open your eyes to what I am saying.
Of course, the prospect of becoming blind is frightening. Of course the possibility of losing vision is scary. Yes, the thought of permanent loss of one's primary sense, never to be regained, is something straight from a horror movie. This is equally true about the loss of any sense, a limb, or a major organ function. I am not trivializing blindness. I am not suggesting that it is simple, or that it is something to which anyone would look forward. What I am saying is that fear, especially fear of blindness, can be overwhelming. It can be overpowering, so profoundly paralyzing that the mere thought of the "B-word" can—and often does—lead us to make rash decisions. These bad decisions can have lifelong impacts and negative consequences for our children. Even worse, the fear can leave us powerless to make any decisions at all and ready to acquiesce to the horrible fate that awaits.
But what is the truth about blindness? How can any sane, rational, thinking, and honest person put a positive spin on blindness? What can anyone say to diminish the fears, to calm one's nerves, to change what it means to be blind from something debilitating, demeaning, and depressing? What possible hope is there beyond full vision restoration?
What if I simply told you the truth?
What if I told you there are literally thousands of blind people across this country and the world living normal and independent lives? What if I told you it is commonplace for blind men and women to graduate from college, to obtain graduate degrees, to become employed, purchase homes, get married, have children of their own, go on family vacations, and participate in local church and social activities? What if I told you that blind men and women worked as schoolteachers, designers, engineers, lawyers, social workers, bartenders, supervisors, managers, computer information specialists, carpenters, and much more? What if I told you that blind men and women had sighted friends, blind friends, and friends of every description? What if I told you that blind people go to the movies, sporting events, and the theater; that they have friends over for cookouts, babysit each other's kids, and go on vacations; that they discuss politics, current events, and what's happening on Facebook?
And what if I told you that they even used the word "blind?"
Now, let me be clear about one unassailable fact. Between 80 percent and 90 percent of individuals in the United States who are blind have some usable vision—all the way from light perception up to the ability to read print and recognize faces. These people, too, use the big, bad word "blind" to describe themselves. They do not use it as a badge of courage; not as something they have conquered; not to elicit pity, sympathy, charity, or praise; not to cut in line at Disney; not to get preferential seating on airplanes; not to make a political or social statement. They use it for one simple reason.
Are you ready for the truth? Are you ready for the secret to success? The $100,000 answer? The top secret that will ensure that your child does not grow up to be blind?
Here it is.
These men and women have learned one simple and unassailable truth. Blindness, with proper training and education, can be reduced to little more than a nuisance—yes, a daily, sometimes irritating, sometimes frustrating nuisance, some days more so than other days. Given the right perspective, given basic blindness tools such as cane travel, Braille, and daily living skills, the average person who is blind (and this includes all children and adults whose eyesight is sufficiently impaired) can live a normal, independent, healthy, happy, and productive life.
All of this is true. There is statistical data, and thousands of blind men and women today can attest to it.
Yes, it is also true that upwards of 60 percent of blind persons remain unemployed; that upwards of 90 percent of blind youth cannot read and write Braille; and that persons with vision loss are often dependent on social and public welfare, unable to care for themselves.
Both of these truths are statistics; which side of the statistical coin do you wish for your child with vision loss to be on?
Saying the word "blind" in and of itself does not make all things better for your visually impaired child. However, refusing to acknowledge the blindness, hiding the vision problem, and downplaying the extent of the impairment will most certainly make everything worse. It teaches your child that blindness is to be feared. It puts him at risk of falling behind in class because he does not have the appropriate reading medium, and it puts him in physical danger when he does not use a long white cane.
While we are on the subject, let's get a few more facts out there on the proverbial table:
My suggestions for you include the following:
Now, you have a choice to make. I admit to you wholeheartedly that it is not an easy choice at first, but—once you have made the choice to embrace your child's blindness and abolish fear—I promise you that everything begins to get better. (Tweet this!) As you contemplate this weighty and life-changing decision, I would like to offer you a little poetry.
The Road Not Taken
by Robert Frost
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
I am sorry that I can do nothing for you regarding the visual diagnosis or prognosis for your child. I cannot help you to prevent your child from becoming blind—that is bleak. What I can offer you as an alternative is the blindness I know to be true, normal, independent, happy, successful, productive, and fulfilled.
The choice you have to make is which road you'll take.