Rearranging deck chairs on The Titanic

In the 1990s I worked at The University of Pittsburgh in the Vision Studies Program.  I had the responsibility of planning and providing instruction for future teachers of the visually impaired. Every spring the students were provided an opportunity to visit some of the major agencies associated with our field.  One of the stops was The American Foundation for the Blind (AFB), an organization founded in 1921 and the one to which Helen Keller devoted much of her life. My Pitt grad students had the honor of sitting at a conference table with Susan Spungin who was the associate executive director and vice president of AFB.  For many years Susan has been recognized as a fierce leader in the field of visual impairment and I was honored when Susan wrote the Foreward to the first edition of Cortical Visual Impairment: An Approach to Assessment & Intervention.  Susan is wicked-smart and I have always known her to speak with straightforward honesty.  During her meeting with the Pitt students, Susan was discussing a conflict in the field of visual impairment and used a phrase I have never forgotten; she described the futility of the conflict as “rearranging deck chairs on the Titanic”.

That phrase comes to mind so often as I consider the struggle in the field of visual impairment to support the diverse needs of children who have CVI.  The struggle does not live within the families of children with CVI but with the policymakers and university professors who continue to define visual impairment from a limited perspective.  Children with CVI have a condition that affects the visual processing centers of the brain and their needs are distinctly different than those who have ocular forms of visual impairment.  CVI has been identified as the leading cause of visual impairment in developed countries since the 1990s and parents have waited patiently for an appropriate response to their children for over 20 years.  But no longer.

A tidal wave of advocacy for children with CVI is in effect. And as we have learned from other major movements in education going back to Brown vs The Board of Education in the 1950’s and the autism awareness movement of the 1980’s, that when parents are mobilized, change is inevitable.  There has been a timely eruption of international organizations such as The Pediatric CVI Society and groups on social media such as Start Seeing CVI, CVI Mommafesto, and Little Bear Sees.  A podcast called Kaleidoscope provides intimate interviews of the experiences of families who have a child with CVI. Perkins School for the Blind has an eLearning program that offers an array of courses on CVI that have been in high demand by interested providers and parents from all parts of the world.  The groundswell is gathering momentum at an impressive rate and it not going to be reversed.  The time is now and those of us who are charged with supporting children with CVI would be wise to heed the signs.  Right the ship now.  Pay attention to the monumental shift in the field of visual impairment.  Check out our history, it is not the first major change in how we define visual impairment.  And, do not equate CVI with “another condition”  like cataracts or glaucoma.  CVI is a distinctly different form of visual impairment that requires providers, teacher prep programs, and policymakers to redefine principles, methods, and materials used to provide education for this population. We must re-examine the proportion of pre-service training curriculum that with some exception, currently fails to concentrate on the largest group of children with visual impairment. This is not to suggest that methods for teaching children with ocular blindness or low vision should be set aside.  Obviously not. But, attempts to cling hopelessly to the comforts of the status quo will fail.  While the field of visual impairment is working so hard to keep the furniture in place, the ship is sinking.

The shift toward a child with CVI representing the “face of visual impairment” is not what many of us were prepared for.  But frankly, neither were the families of children with CVI prepared in advance for the numerous and frightening diagnoses they are forced to sort through.  We should be grateful, not critical of the parents who have given us this mandate. Disequilibrium is uncomfortable because it shakes our foundation and forces us to make a decision to stay put or to step onto new ground.  But it is not the shifting ground that should cause us unrest, it is what we choose to do in response. The response to step in one direction or the other becomes a mirror of our beliefs.  In the end, all providers have the opportunity to decide whether parents are simply too demanding, unrealistic, brainwashed, or in denial.  Or, we can remember that parents of children with CVI are the same as all of us.  They alone know their children with laser clarity and recognize which learning challenges are most rewarding or menial for them.  We all want our children to have a full and happy life.  Teachers, administrators, therapists, university personnel, and state policymakers would do well to take a moment to ask what we would want if we walked in the shoes of parents whose child has CVI.  It is a simple but powerful perspective.