First of all, Miss Helen Keller wasn’t the FIRST noted Deaf-Blind woman in America. If it weren’t for Laura Bridgman who was the first Deaf-Blind pupil to be enrolled at the Perkins School for the Blind in Watertown, Massachusetts. Laura had to make some people figure out how to reach her and help her learn the basics of daily living. One of her teachers was Anne Sullivan.

Yes, the Anne Sullivan, the Miracle Worker! Laura grew up at Perkins and stayed on the grounds at Perkins School for the rest of her life because she didn’t have anything to employ herself and she needed day to day caring. The school was willing to provide her room and board so that Laura could survive in near isolation and solitude with occasional worker coming in to check on her.

However, when Captain Keller, the shipping magnate, and father of Miss Helen Keller, realized he needed to secure the services of a teacher. He contacted the Perkins School for the Blind and arranged for a teacher/tutor to come all the way down from Massachusetts to Alabama where Miss Helen lived.

As many of us have either read Miss Keller’s book, The Story of My Life, or other books; a screenplay then a movie, The Miracle Worker with Patty Duke acting as little untamed Helen and Anne Bancroft as Anne Sullivan and the famous dining room scene and the enchanting glimmer of understanding of fingerspelled word, “W-A-T-E-R”.

However, as I read some of Miss Keller’s works, I began to discern a few things that one needs to pay close attention to. “Call it reading between the lines” that Miss Helen was always surrounded by someone near or by her side most of her life, whether it be Miss Sullivan, or eventually Miss Polly Thompson. Miss Helen never really went off on her own as many of us Deaf-Blind people are today. Yes, many of us can travel on our own.

The most notable and independent couple I met up at several conventions of the American Association of the Deaf Blind (AADB), were Leonard Dowdy and his wife, Betty Kahn Dowdy of Kansas City, Kansas. Betty Kahn attended Gallaudet College but soon dropped out due to her sight loss. Her husband, Leonard was a graduate of Perkins School for the Blind and was schooled in the fine communication called Tadoma method.

This Tadoma method was the process where a Deaf-Blind person puts his or her hand on the speaker’s face, lips, throat and ‘read lips through fingers”. Tadoma method is not used much any more and it takes years and years to become proficient in this method. I’ve met a few others who used Tadoma method: Ray Bodush of Buffalo, New York; Robert Smithdas, Port Washington, NY.

Miss Helen learned Tadoma method for one thing; she also learned to fingerspell and read fingerspelling at high speed or perhaps shortcuts or shorthand in spelling out long words! Miss Helen knew how to use Braille and wrote both in print and in Braille her books and articles for publication. She even prepared her speeches using both modes and was a world-class traveler and made numerous speeches around the globe.

She did not address much on Deaf-Blindness per se but addressed on the current day topics such as war, human rights, suffrage and the like. On her tours to exotic far away places she stopped at various sites to visit Deaf Blind children and provided educational support and helped many institutions make progress for their own Deaf-Blind people.

As Miss Helen began to absorb her time and energy more and more with Blind people, she also made friends of numerous Blind people who wanted to work with Deaf-Blind children and adults. As early as in the 1930's, the Industrial Home for the Blind, in Brooklyn, New York opened their place to accommodate adult Deaf Blind people. Incidentally, there were about 50% of Adult Deaf-Blind people who suffered from Retinitis Pigmentosa. They did not know much about this insidious eye disease of Retinitis Pigmentosa. Industrial Home for the Blind incorporated these people into their training and employment.

These Blind people knew how to fingerspell; as a consequence, they communicated with Adult Deaf-Blind people who knew Sign Language. Those DB people had to drop their signing to more of fingerspelling mode if they were to be able to communicate. This has caused a lasting psychological effect on those with Usher Syndrome to lose their original identity as Deaf first, and became models of Miss Helen Keller.

What a blow to the community of Usher Syndrome people today. When I realized I was facing the future with eventual loss of central vision back in 1974 after reading the Deaf American: March, 1974 issue which featured “The Usher Syndrome: Deafness and Retinitis Pigmentosa." This article has irrevocably changed my life forever. This article also made me realize that my destiny in life was to be here in Louisiana and to work alongside with other people similarly affected by ‘founder effect’ of Usher Syndrome from before 1755 to this day.

When I approached some of my friends from earlier days but my perspherical vision was narrower and I found it easier if I held the signer’s hands and continue to follow their signing. But when I touched their hands, they abruptly stopped signing and converted to fingerspelling and spelled or even misspelled in my hand. I was not good at reading pure fingerspelling either visually or in hand so I asked the Deaf person to please continue signing and not to fingerspell. They were so confused by my request. For a long time I puzzled over why Deaf people fingerspelled in my hand when I touched their hands instead of watching (and missing some signing) of their enchanting signs. Finally I realized who their ‘role model’ of a Deaf-Blind person was: Miss Helen Adams Keller. Oh my goodness, she was their role model, but boy!!!!

One most notable quote Miss Helen has made when asked: “which do you prefer, being blind or being deaf?”
Miss Helen thought for a few moments then replied, “Being Blind cuts people from things. Being Deaf cuts people from people. Therefore, I prefer to be Blind because then I can stay in touch with other people.” Paraphrased by the columnist.

For four decades after her first contact with American Foundation for the Blind, as a volunteer, Miss Helen Keller had gone all around the world supporting numerous causes besides Deaf-Blindness. Because of her stance as preferably being Blind rather than Deaf, she had NOT grasped the irony of it all: Being Blind is one thing; being Deaf is another. But to multiply Deafness with Blindness is all together exponentially larger of a singular challenge and should be treated as a distinct THIRD group of sensorial impaired people!

This stance of Miss Keller has caused numerous agencies, notably the Vocational Rehabilitation which had come under as “Division of Blind Services; Division of Deaf Services; Division of this or that, usually connected with wartime injuries and needing rehabilitation. As an individual coping with gradual vision loss such as people with Usher Syndrome are prone to do, they contact the Vocational Rehabilitation Division of Deaf Services.

The counselor tried to figure out what was the best way to assist them but ended up transferring cases especially with Usher Syndrome or Deafness-Visually Impaired over to Division of Blind Services. Because several VR counselors who handled Deaf caseload can sign, so this was an important factor to consider before transferring a case over to the Division of Blind Services. Over at the Division of Blind Services, one would find very willing and helpful counselors ready to assist but were ‘handicapped’ because they did not know the sign language and did not understand the culture and language and identity of Usher Syndrome people. This was an important psychological factor when one stopped to think of the ramifications of switching from one Division to another.

It was not until the Deaf-Blind community of Seattle Washington who had their meetings to form a much needed service agency. They dealt with the issue: Which agency to go under? Deaf Division? Blind Division? Developmentally Delayed Division? As this group of assertive Deaf-Blind people AND their most supportive and interpreters who worked alongside with them as advocates.

They finally came to grips with the reality: Being Deaf-Blind is not either Deaf or Blind, but a very clear and distinct THIRD entity. So as a result of their numerous meetings during the mid 1970's and early 1980's, they finally decided to ask from each of these three agencies to contribute $50,000 each year to support and implement this Deaf Blind Service Center. This agency still continues to function along with increased funding as needs change or expand.

Miss Helen Keller had done tremendously to enhance the lives of countless Deaf Blind children and adults. However, there seem to be something missing from the life’s general purpose of living and working in one’s own home community and the world around US. The fear of interacting with a Deaf person by a Blind person is still felt today as well as a Deaf person has the fear of interacting with a Blind person.

Why is this mutual opposite pull away from each other? Because Deaf people depend heavily on vision and sign language whereas Blind people depend heavily on their hearing and the sounds of their environment to cue them as to what is happening. If a Deaf person walks into a room where a Blind person is, the Blind person would call out, “Who is this? What’s your name? Or Who are you?” Of course the Deaf person did NOT hear this question and respond; the Blind person becomes paranoid and wondered why this person didn’t acknowledge their presence.

There are 70,000 Deaf Blind people in this country today. Almost all of them are sufficiently independent to a degree but still need auxiliary services such as Support Service Providers, Interpreters and any assistance that a human being can render, such as transportation, home health care, mail readers and many possible scenarios that it would be an amazing miracle if a Deaf-Blind person can drive a car to go where he or she needed to go, or being able to converse easily while standing on a line at a grocery check out line, or having a coffee break with their normal co-workers. This is very difficult unless this Deaf Blind person happens to have another Anne Sullivan Macy or Polly Thompson along as an 24/7 companion and go everywhere a Deaf Blind person goes? This is not feasible. This is not healthy today to be ‘stuck with someone 24/7" and not having a respite care worker to take over when this companion needed a ‘mental health’ break!

This goes without saying the undue burden of having a Deaf-Blind member in a family or in marriage where the able-bodied spouse would be expected to provide 24/7 communication and other assistance. This is unrealistic expectation by outsiders that this could be done 'easily." Not!The Cost of VolunteerismAs mentioned above, Miss Helen Keller went to aid the American Foundation for the Blind as an unpaid volunteer for 40 years. This is something we all need to analyze and wonder. Was this a good move? Was this simply an acknowledgment that being employed and drawing a salaried position would have made Miss Keller a wealthy woman in her own right? What kind of signals did this ‘volunteerism’ evoked in other people’s minds in 21st Century?

Of course our President George W. Bush encouraged volunteerism during his post September 11, 2001 terrorist attacks remarks. He probably wasn’t referring to people who have NO JOBS but go volunteer and live without drawing a wage or salary to support their own family or needs. President Bush probably meant that after-work hour; one can join an organization as a volunteer during spare time and give service.

Deaf people are famous for volunteering their time with their own Deaf organizations. Even Blind people volunteered their time in similar activities. However, this kind of thinking that Deaf Blind person is not employable has to change because we as Deaf Blind people really need to work and earn money in order to support themselves, their families or support a need in their lives. Staying at home and rattling around the apartment or home can be counterproductive. This area of employability needs to be examined very closely and seek ways for people to offer their invaluable services as unique human beings facing challenges that a normal, able-bodied and well-equipped person shudders to think if one day he or she wakes up without sight and sound!

Definitely Louisiana is a deserving state to request for such SSPs because there are about 388 to 1,000 Deaf-Blind people in this state as the highest per capita. However if we look at 70,000 Deaf-Blind people, and if we break them down evenly among 50 states and far-flung territories, that comes to 1,500 each state. Or we should figure these 70,000 individuals with varying degrees of etiologies and count them as "per capita" such as heavily populated areas with possible higher numbers while in rural areas, numbers are lower.

Therefore we will have to look harder for those hidden under rocks, up in trees and wherever they might be hidden from public eye. Deaf-Blindness is insidious in many situations and when one’s vision begins to fail rapidly, one will know something is very wrong with this person’s eyesight. But before that happens, no one knew what was causing them to lose vision. Of Deaf-Blindness documented by the Helen Keller National Center over several decades, they find consistently that 50% of Deaf-Blind had Retinitis Pigmentosa (aka Usher Syndrome). The other 50% are distributed unevenly among different etiologies such as birth defects, different genetic factors and other aging or war/accident/casualties.

After all . . . if it weren't for Miss Helen Adams Keller, we all wouldn't be here today advocating for ourselves or even attending this national conference of Deaf-Blind people in America, or even hold down jobs at our respective home states!

Let's continue to make a difference for future generations of people who may come after us!