Deafblindness Impacts Millions of Lives

Posted on September 24, 2021 by Martin Oaks under Community, Hello world, Resources
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“What?  What did you say?  Please repeat that.”

Is that a conversation you’ve been part of recently?

Or, how about this one:

“I can’t read that print, it’s too small.”

If you recognize any of the above, welcome to the inevitable.  It might be that you are just getting older.

As physics professor Peter Hoffmann said: “Life pits biology against physics…eliminating cancer or Alzheimer’s disease would improve lives, but it would not make us immortal…we need to be clear about one thing:  we’ll never defeat the laws of physics.”

Sensory disabilities are part of those laws of physics.  Vision and hearing are particularly subject to aging influences.

According to the Hearing Loss Association of America, 48 million people have some degree of hearing loss. That includes one in three of those 65 to 74 years of age and one-half of those over 75.

Similar numbers of seniors have visual impairment.  Low vision, permanent vision loss not correctable with glasses, is present in one out of every six adults over 45, and one in four above the age of 65.  These problems are caused by conditions such as macular degeneration, cataracts, and glaucoma, among others.

Then, there is another unfortunate group — estimated to be two million people or more — who suffer the afflictions of both hearing and vision deficits.  The diagnostic term for this ailment is Dual Sensory Impairment (DSL).  In scientific literature, it is also referred to as Multi-Sensory Impairment, Dual Sensory Loss, and Deafblindness.

Dr. S.L.H. Davenport defined it as: “any combination of hearing and vision loss that interferes with access to communication and the environment and requires interventions beyond those necessary for hearing or vision loss alone.”

The medical community has been aware of DSL for a long time, but, as Drs. Chyrisse Heine and Collette Browning wrote, “DSL is poorly understood, under-recognized and underdiagnosed.”

Detailed research has only been existent for the last 15 years — possibly because the condition involves several senses, thus requiring a collaboration of professionals who do not have detailed cross-disciplinary training.

The result, according to PhDs Gabrielle Saunders and Katharina Echt, is treatment protocols fluctuate greatly.  “There is almost no research on rehabilitation for this population,” they stated.  “There is a tremendous imperative to develop and test rehabilitation strategies.”

Current DSL research has focused on the plight of the patients — their situations can be truly challenging.  Studies have revealed episodes of depression, social isolation, and greatly limited functioning in Activities of Daily Living.  Measures of life satisfaction, well-being, and feelings of personal security all point in the same direction — DSL has significant consequences.  Even in less severe cases, it may still be a disruptive force, both for those who directly suffer and their family systems.

The most celebrated and the most inspirational DSL case in history is that of Helen Keller.  Born on June 27, 1880 with unimpaired vision, she suffered, at 19 months, an attack of what her doctor called “brain fever” — most likely scarlet fever or meningitis — which left her both blind and deaf.

When she was six, a specialist suggested a consultation with Alexander Graham Bell, the inventor of the telephone and an expert on treating deaf children (both Bell’s mother and wife were deaf).  At Bell’s urging, Keller enrolled in what was then called the Perkins Institute for the Blind in Boston.

Through Perkins, Keller was introduced to her teacher and companion for the next 49 years, Anne Sullivan.  With Sullivan’s help, Keller learned to overcome the obstacles of DSL:  their struggles and triumphs were chronicled in Keller’s autobiography, The Story of My Life.  That compelling book became widely known as The Miracle Worker – a much beloved story adapted for stage, film and television.

Keller wrote fourteen books and, working for the American Foundation for the Blind, traveled to more than 30 countries on behalf of those with sensory loss.

When she passed away at the age of 87, Keller was cremated.  Her ashes were placed alongside the cremains of Anne Sullivan in a columbarium at the Washington National Cathedral.  The inscription on her marker is written in English and in Braille.

Helen Keller’s life is a study in perseverance.   She conquered DSL, and in doing so, became a role model for all who face adversity of staggering proportions.

“The best and most beautiful things in the world cannot be seen or touched,” Keller once said.  “They must be felt with the heart.”

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