Edward Bell, Ph.D., CRC, NOMC
Latest posts by Edward Bell, Ph.D., CRC, NOMC (see all)
- The Elephant in the Room - July 24, 2020
- Leading Voices of Diversity and Inclusion - June 17, 2020
- Keeping Up With Your Braille Knowledge At This Time - March 27, 2020
- SurveyGizmo and PDRIB Power Ground-Breaking Research on Blindness - February 27, 2020
- Making a Distinction: Teachers of Blind Students - August 12, 2019
Significant vision loss and the thought of pending blindness is 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 is a fate perhaps 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 eyesight…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 and achieve success in college](http://www.pdrib.com/downloads/Factors%20that%20Contribute%20to%20the%20Success%20of%20Blind%20Adults.doc]; and the worse one’s sight becomes, the worse can be his or her prospects for living a normal life. It seems becoming a beggar on the streets, locked away in a sheltered sweat shop, and a life of destitution and despair are near certainties.
Parents often ask:
- What can be done to prevent blindness for my child?
- How can the medical community reverse vision loss to avoid such tragedies?
- How can I restore my child’s vision?
- How can we stop or reverse the progression of vision loss?
- What hope is out there for a child whose eyesight keeps getting worse?
- How can I face this future for my child?
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.
The Bad News
Why do we always start with the bad news? I guess to get the worst over with quickly. The bad news is 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 22 years ago that blindness would be cured in about 20 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 for the cure is precious time that is slipping away, and that's time which cannot be put back into a bottle. So, is all hope lost? No, not just yet.
The Good News
Now that the bad news is done, let’s move onto 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, choke it down 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 100 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.
The Elephant in the Room.
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, limb or major organ function. I am not trivializing blindness. I am not suggesting that it is simple, nor something to which anyone would look forward. What I am saying is 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 have life-long impacts and negative consequences for our child. Even worse, the fear can leave us powerless to make any decisions at all and 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?
The Truth
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 a home, get married, have children of their own, go on family vacations, participate in local church and social activities? What if I told you that blind men and women worked as school teachers, designers, engineers, lawyers, social workers, bar tenders, supervisors, managers, computer information specialists, carpenters and much more? What if I told you blind men and women had sighted friends, blind friends and friends of every description? What if I told you blind people go to the movies, sporting events, theater, have friends over for cookouts, babysit each other’s kids, go on vacation together, 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. That 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. But, given the right perspective, given basic blindness skills, 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 who 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?
What to Do
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. This teaches your child that blindness is to be feared, puts him at risk of falling behind in class because he does not have the appropriate reading medium, and puts him in physical danger when he does not use a long white cane.
So, while we are on the subject, let’s get a few more facts out there on the proverbial table:
- Refusing to discuss vision loss does not make the problem go away.
- Not wanting to say the word “blind” does not change the visual diagnosis or prognosis.
- There is no correlation between more vision and greater happiness.
- Better vision does not lead to better employment.
- Promoting the use of residual vision over non-visual alternative techniques does not increase one’s ability to see.
- Making font bigger and bolder does not make a kid a better reader.
- Reading braille neither makes a kid blind, nor does it make his eyesight worse.
- Asking a child to hold onto our hands so as not to be seen with the white cane does not make him more independent.
- Putting the cane away does not make your child look “normal.”
- Using a white cane for mobility does not make your child vulnerable or helpless.
So, my suggestions for you include the following:
- Do not put off until tomorrow what you can do today.
- Do not postpone happiness while waiting for a medical cure for the eye condition.
- Do not put all your eggs in one basket, especially if that basket already has damage to it.
- Do not limit your child’s literacy and education in favor of maximizing the use of his remaining vision.
- Do not limit your child’s exploration of the world based on what he can or cannot see.
- Have your child use a cane and embrace his independence and freedom.
- Do investigate the incredible access to the world that comes through non-visual exploration.
- Find competent and positive blind role models and hold onto them for dear life.
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 FrostTwo 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 can help you to prevent your child from becoming blind—that is—the blind that we know as hopeless, helpless, discouraging and 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.
Edward Bell, Ph.D., CRC, NOMC
Latest posts by Edward Bell, Ph.D., CRC, NOMC (see all)
- The Elephant in the Room - July 24, 2020
- Leading Voices of Diversity and Inclusion - June 17, 2020
- Keeping Up With Your Braille Knowledge At This Time - March 27, 2020
- SurveyGizmo and PDRIB Power Ground-Breaking Research on Blindness - February 27, 2020
- Making a Distinction: Teachers of Blind Students - August 12, 2019