Help! My Baby is Blind!

 In Advocacy, Diversity and Inclusion, Newsletters, Public Speaking

Every expectant or new parent anticipates getting only the most “perfect baby in the world.”  If the newborn child looks in any way different, or if the doctors find “something wrong” with the child, all joy and enthusiasm can come crashing down around the new parents and their families.

A perfect example of this is what happens to any mother who gives birth to a child which happens to be born blind.  In my case, for example, the blindness was not diagnosed until four months after I was born, and the blindness was not technically there at birth, but it was caused by me being given a pure Oxygen environment right after birth.  You see, I was born two months prematurely and the Oxygen-rich environment was necessary in order to keep me alive.  The condition which caused my blindness is known as Retinopathy O Prematurity.  Blindness is not always the result of a pure Oxygen environment for newborns, but it can be a condition that results.

I can only imagine how my parents must have felt when they learned in July of 1950 that I was totally blind.  To make matters worse, the doctors in Chicago where I was born told my parents to send me away and put me into a home since all my presence would accomplish would be to destroy the family dynamic and the relationship my parents had with their older son who was sighted and normal.  Essentially, the doctors told my parents I was worthless and that I could never amount to anything simply because I was blind.

My parents were horrified, not as it turned out because I was blind, but because of the reactions and opinions of the doctors.  They rejected out of hand the viewpoint that I was worthless and could not grow up “normal” simply because I was blind.  They told the doctors that they were taking me home and would raise me to believe that I could do anything I set my mind to do.  In escense they told the most knowledgeable physicians of the day that they were going to teach me that it was okay to be blind and that I could make my way in the world.

I think the results speak for themselves and demonstrate that my parents were right.  I went to public school and graduated high school at 18 years of age.  I earned the rank of Eagle Scout in the Boy Scouts of America.  I earned a Bachelor’s and Master’s degree in Physics.  I worked successfully in sales and management positions for 26 years.  I was in my office in the World Trade Center doing my job when terrorists attacked the building.  I escaped and my career has continued to evolve as a result of that experience.   I now travel the world telling my 9-11 personal story and discussing the life lessons which help others adapt to change and overcome circumstances.   I still sell, but now I sell attitudes and concepts of life, while encouraging people to do and be more than they ever thought possible.  I even run my own consulting company.

The view that blindness is the most disastrous of all “disabilities” is wrong.  In fact, no “disability” should be considered the end of the world and a end of dreams and ambitions.  Based on numerous surveys exploring perceptions and feelings about blindness, we know that many people view blindness as one of the most horrible things that can happen to anyone.   According to the Gallup Poling organization, 76% of all people in the United States fear blindness more than any other “disability,” ranking blindness as one of the top five fears we face.

My parents chose not to fear blindness, but rather to embrace it as one of the characteristics that were part of my makeup.  They found ways to show me the world and how to live in it.  At times they were fierce fighters on my behalf.  While they did not expect the life we encountered together, they faced it with joy and discovered that they did okay with their efforts.

So, the question is what will parents today do if they find they have given birth to a blind baby or if their child becomes blind for some other reason?  Here are my suggestions:

  1. DRIVE OUT FEAR FROM YOUR MIND.  Raise your blind child to be the best he or she can be.  Each of us is born with gifts.  Embrace the gifts you discover in your child.  Blindness can be one of those gifts if you and your child make it so.
  2. LEARN MORE ABOUT BLINDNESS FROM THE EXPERTS.  The best way to do so is to find the nearest chapter of the National Federation of the Blind,  Before you attempt to locate any state, local, or other private “agency for the blind,” listen to blind people themselves.  Through the NFB you can make the acquaintance of other parents of blind children.  The federation has a division called “The National Organization of Parents of Blind Children,” (NOPBC), with hundreds of couples who are raising or have successfully raised blind youngsters.
  3. DON’T SHELTER YOUR BLIND CHILD.  When I was three, or was it four years old, I recall walking with my cousins and brother to the local candy store.  Sometimes I held someone’s hand to get there, but once I learned the route I needed no extra help to get to the store or anywhere else.  When I was seven I was independently riding my own bike around our town, Palmdale California, where we moved two years before.  Although neighbors chewed out my parents constantly,  I was still given the freedom to take risks, make mistakes, and also to succeed.  Blindness DOES NOT mean inability to observe, think, or act.  Allow a blind child to be part of the world and to make friends like any other kid.  Sure parents should provide ground rules for a blind child just as with any child, but do not make those rules more restrictive and hindering simply because of blindness.  When the child falters make sure the appropriate lesson is learned and move on.
  4. PUSH YOUR BLIND CHILD.  People will always be telling you and your child what a blind person cannot do.  I am constantly amazed at how many people think they are experts on blindness even though they have never tried it or know any blind people.  Perseverance must be the order of the day, especially when raising a blind child.  The best way to counteract challenges from society is to find good role models who are blind and who can help show you and your child how to live, function and succeed.  Again, the National Federation of the Blind is the best place to find such people.  You must encourage your child and show him or her that life is a challenge for everyone, not just them.  You can teach your child the skills he or she will need although you may have to teach using alternative techniques to sight.  Who knows, you may learn a thing or two along the way.
  5. ATTITUDE FIRST, TECHNOLOGY SECOND.  There are many technological devices to help blind people read, work, monitor a computer screen, and do lots of things.  However, technology is a means to an end only.  The self confidence a blind child learns is first and foremost what any parent must instill.
  6. MAKE CERTAIN YOUR BLIND CHILD LEARNS TO READ AND WRITE.  In our world many of the so-called experts tell people who have some eye sight that they do not need to learn Braille.  These “experts” say that so long as one can see that print is better than Braille and, after all, Braille is passé.  They encourage blind people to use recorded books and talking computer software called screen readers, but not Braille.  These experts are ABSOLUTELY WRONG!  Braille is the only means for true reading and writing available to any blind person.  If we discourage Braille reading then we also should discourage the teaching of reading and writing printed matter for sighted persons.  Blind persons who do not learn Braille tend not to be able to gain employment as easily as their Braille reading colleagues.  Also, just for the record, Braille is not meant for only people without any sight.  If a person’s eye sight is diminished to the point that they must either use enhancements or alternatives to be able to read print then that person should learn the techniques of blindness.  I have seen hundreds of persons who were partially blind as children who were not taught Braille, but instead were taught to read large print characters, or they were given magnifiers to enlarge standard print fonts.  In almost every case they grew up not being able to read nearly as well as a child who learned Braille, regretting as adults their lack of Braille reading and writing skills.  So, demand that your blind child, totally or partially blind, learn to read and write with Braille and do all you can to see that your child masters these skills.  You won’t regret it.

    I could go on with more thoughts, but I hope you get the idea.  If I said “don’t treat your blind child differently than any other child” I would be misguiding you.  Instead, you should give equal treatment using whatever tools are called for depending on the child.  Most of all, hold every child to the same ethical, educational and life standards.

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