Deaf and Blind: worth the effort

By Otto Fritschy

Deaf and blind people are as normal as special people and as special as normal people. The problem is that communication fails in most of the circumstances. And when communication stops there is room for all sorts of inadequate feelings and misinterpretations. It causes lack of information on both sides. And the end of the story is that the deaf and blind pay the bill. Even the control offices of health are unaware of what is going on. So who is going to judge the neglecting? The deaf and blind are being neglected in all sorts of ways, sometimes even when the intentions are unquestionable.

A couple of years ago we did a research in a care home for the deaf in the Netherlands. The number of people investigated was not large but we tried look at as many features as possible. We investigated ten people who were born deaf (or at least early deaf) and developed bad sight later. We investigated the physical state, with special attention on ears and eyes, the mental state, the social circumstances and communication. And we tried to make a biography. All those items where mapped in a wide range of ways. For instance: We did not only do a physical exam but we also tried to map how many times a person consulted a doctor in the past ten years. It turned out that the worse vision got, the less people consulted a doctor. And in hearing groups of older people it is the other way around: the older one gets the more he sees a doctor. Going blind sadly meant less seeing a doctor in every meaning of the word.

Anne Sullivan died in 1936, at the age of 70 years. She was blind due to an unknown cause, and got back her sight partly with a number of surgeries. In 1880 she was admitted to the Perkins institute and Massachusetts School for the Blind in Boston. And a tough girl she was, her nickname was the "spitfire" referring to her inflammable temper and her sharp tongue. She got the task to guide blind children. Anne’s first favorite was Laura Bridgman, the first deaf and blind child that went to school in the US. Laura learned the hand alphabet, and so did Ann. In 1886 she was graduated as the best student and had the honor to do the Speech.

Helen Keller died in 1968, at the age of 88 years. Her stories were so immense and intense that everybody should know by now what it is all about for deaf and blind people. And in fact there are just two basic needs: communication and information.

She was born June 17 1880 in Tuscumbia, Alabama. She had some speech at the age of 6 months according to her mother, but at 19 months she got the "brain fever" as they called it those days, which was highly likely meningitis. The consequences were disastrous: she became deaf and blind. And in those days brain fever meant mental retardation. That deaf and blind children were not able to develop simply because they could not understand their surroundings was unknown.

In the total population of deaf and blind only a fraction like 10- 15% is already deaf and blind from childhood. Most of them have congenital or hereditary diseases. Most of the deaf and blind become so in their third stage of life. In between there is the early blind-late deaf group and the early deaf-late blind group. In the higher ages one gets more risks and threads for loss of senses so the combined loss of two senses like hearing and sight is not that rare.

So Helen Keller was just very unlucky to have had an illness that destroyed her eyes and ears. She was lucky however that she kept the rest of her brain skills, because loss of two senses often means more destruction. But, although there are no test results known for her IQ, there is no doubt it was extremely high. It made her the perfect role model, legend and leader of deaf and blind, in her time and even after her death.

With her extraordinary skills she had the need for communication, information, learning, knowledge, and stimulation which she would get one way or the other. Like a starving person who even steals food to get it. But what we learned is that all deaf and blind have that need, and that if provided they are a lot better off.

If there is communication, hidden diseases can be traced. In our research we found out of ten cases, 9 classifiable mental disorders not diagnosed before. At least it was not known in a medical history. Three people were suffering from dementia. One had Alzheimer’s disease, one had a vascular type of dementia, and one had Parkinson’s disease. All three disorders should be approached differently, and would, in fact be, in a hearing population. But in these cases there was hardly any approach at all.

5 people had a type of depression, one of them a major depression, which is very accessible for medical treatment. But it was not done so. Nobody knew. The person was treated and got over his depression in about 6 weeks.

Did I mention eye doctors visited by deaf and blind persons? Look what we can learn from Helen Keller’s biography. And it was a visit with a surprising impact.

The more little Helen grew up, the worse her frustration and anger became. She got wild and really impossible to handle. She got violent, stole, did real dangerous things. One time she pushed the baby bed of her little sister upside down, one time she locked up her mother in a larder. Something just had to be done.

So her parents took her to an eye doctor in Baltimore, specialist in blindness, and he took them to no one less than Alexander Graham Bell. He was not only the inventor of the phone, you know the forerunner of the T.T.Y. with Braille function, but he was also an expert in deaf education. Graham Bell recognized her intelligence instantly. As you know those high-skilled people do, like soul brothers and sisters. For he was not standing exactly end of the line too, when brains were handed out. So he sent her to the Perkins Institute. The Principle knew immediately that Anne Sullivan would make the perfect match.

And look what Anne describes about the first moment that she met Helen. I quote her diary:

"Her face is hard to describe. It is intelligent but it lacks sensitivity, or a soul maybe." And further: "She smiles rarely".

But although Anne was 21 years old, she understood Helen, having been blind and having showed the same behavior just like her.

I recall what we found in our research: 6 out of ten people were depressed, 3 of the others were suffering from dementia so depression might be kept hidden. So Helen was probably just depressed and nobody recognized that. She showed all the features in her behavior.

Nothing changed in a century.

When non-experts look at deaf and blind people they see what they think is acceptable: A face with no soul that never smiles. People who know how to communicate with them know that this face can change or, better, can be changed.

But the match between Anne and Helen teaches us something else. However intelligent, skillful, or capable the deaf and blind person is: there is and always will be the need for guidance. The better the guide the more good qualities will come out. And the best guides are the ones with the personal features that make the match well. In Anne’s case it was her, later healed, blindness and behavioral problems (probably also based on a rather high IQ looking at rest of her life history).

In our research we looked at the communication skills of the deaf and blind extensively. Just a few people had an adequate level of sign language communication. Some people were able to understand the tactile finger spelling, some were depending on writing in the hand. We all know that deaf people are the best guides for deaf and blind persons with signing skills. But we found that deaf people from abroad, like refugees, were dealing surprisingly well with the ones with lower levels. It was like they had to meet each other half way across the bridge, knowing that there was one to overcome in the first place.

Helen Keller was skillful enough to make her own understandable language to her parents, Anne Sullivan was eager enough to learn tactile signing. But Helen had a history, so she had to be deprogrammed. When Anne tried to let Helen do something she did not want Helen started screaming and biting. Helen’s coping tool was anger. And Helen’s family was very protecting and interfered constantly with the way Anne was dealing with Helen. So Anne decided to live with Helen in a small house, alone. Anne did not have to give in anymore and Helen’s behavior changed. That opened opportunities for Helen to learn. Anne only knew letter writing in the hand, Helen had a vocabulary of about 60 signs. After two months there was some language understanding between them: of course in Anne’s method of writing in the hand. Not in Helen’s way, of tactile signing. What if Anne would have been deaf? But the basic need for Helen was information, no matter how gained. So she could not care less.

In our research there were volunteers, with very low communication skills, but a great attitude. And a very open mind, too. However, there was also one case where a deaf woman seemed to have taken possession of "her" deaf and blind friend. We could not approach the deaf and blind woman for proper investigation, and when using her guide as an interpreter we saw that she gave false information about us and our goals. This was a terrible situation: trying to get closer frightened her, leaving her in this poor sick social situation made us feel very bad as well. The reality, the world image of a deaf and blind was depending on a lady who was a very good tactile signer, but a lousy guide. For us it was as we say in Holland a choice between puke and vomit. (Excuse me, I’m Dutch). We tried to become friends with the guide, we tried to convince her.

I still wonder how exactly Anne arranged to separate Helen from her family knowing how strong a symbiosis can be.

Along the road Anne learned proper sign language. As a hearing person I know we are always a bit slow to understand that this is a much easier and faster to express and explain everything. So she went to the School for the Deaf in New York, and Anne was her interpreter. The two developed several language skills, because Helen was so brilliant to learn all of them. She could speak, sign, handwrite, read Braille, feel speech with a finger on someone’s throat. She was so much in contact with the world. But she missed the funeral of her father in1896. They forgot to tell her.

Mistakes are not failures. Mistakes are there to learn from.

We found that deaf and blind people in the care home had very little contact with their families. And they were very often shut off from information about them, through forgetfulness or deliberately. "Let’s not tell him, he can’t handle it, he does not understand, he has forgotten his father anyway". What we do is filter the information. We decide what is useful, what is good or bad, what is important. Whatever intelligence level: if you don’t get the proper information

you don’t know,
you can’t make a personal decision,
you can’t cry or laugh,
you don’t seem to have a soul, you can’t smile.

Helen was the first deaf and blind person that got a bachelor’s. In Art, and with honors. She had very good concentration, a fantastic memory, combined with guts and eagerness. So I am sure she really deserved the title. But we have to be careful: deaf and blind deserve an honest esteem. Not based on false grounds, but on a realistic judgment and knowledge. Not on prejudices, positive or negative: they are both wrong. By people who provide themselves with good communicators, or interpreters. With a total open mind.

Guidance by one person is very vulnerable. Both for the guide and for the one to be guided.

Anne married John Albert Macy in 1905. He was the editor of Helen’s book "The Story of her Life" that made her financially independent. How symbolic. The marriage was no success and was considered to be ended in 1914. There was never an official divorce. A guide of this type has two marriages: the deaf and blind person and her husband. The husband lost.

In 1916 Anne became seriously ill for a short time. Peter Fagan became Helen’s secretary, he was 29 years old and owned a newspaper. They fell in love and there were serious wedding plans. They lived as an unmarried couple in the same house. But a reporter of another newspaper smelled a good story, and wrote a vicious article about it. He suggested a very indecent situation there. Helen ordered Peter to leave the house. She was also a child of her time and very religious. The short romance became a sweet memory, and her loneliness afterwards her biggest disappointment.

If I could see, I would certainly get married so she said. Deaf and blind people are just normal people, with normal needs and demands. But judged and treated by hearing people differently.

Considering all this we decided to organize things differently. Deaf and blind should have more guides than one, in order to check information, to get more information, to eliminate personal focuses, to be able to like and dislike a guide without depending on this person to much. The guides should have more deaf and blind persons, in order to learn that there is more than one deaf and blind person, to gain more skills, to avoid inadequate features of a relationship.

Also we know that it is very important to bring deaf and blind people together to communicate about themselves. To develop language to explain their complaints to a doctor who is not aware of the lack of what we call proto-professionalism. This is the knowledge hearing people collect from social contacts, family, neighbors, radio. We may not realize this but this is the luggage we start with at a doctor’s consultation, and he is also expecting that from us. He unconsciously expects the same from a deaf and blind and the danger is there. No one to blame. Both sides just don’t know.

In our ward for elderly deaf we have also sometimes deaf and blind persons. I sadly have to say that deaf and blind people had serious physical diseases in almost every case. And by the way: about 80% of the deaf people, too. Both groups said frequently there was no point in visiting a doctor since he could not understand them anyway, and some said they would not have the guide involved and also they did not want to offend them by going without them. A disaster. No wonder lots of things indicate that deaf, and deaf and blind people have a less long life expectation than a hearing person.

By the way. We did an investigation a group of 67 deaf elderly, who did not visit an eye doctor on a regular base. The average eye vision was 40%. Of this group, 80% turned out to have a serious eye disease, of which 20% needed immediate surgery. It seems we are creating deaf and blind people by just a lack of organization. It is cheaper to prevent with all sorts of means.

Helen Keller was not average. And she had information. She wrote 12 important books on a wide range of issues, and not only about deafness and blindness. She was a cunning fundraiser, she gave lectures all over the world, she was very close to several US presidents and visited foreign monarchs. She struggled against the death penalty, for women’s rights, against children’s labor.

However, she stayed in contact with her fellow group. She knew they needed her for sharing information. And maybe because of all those skills to gain information she stayed healthy and became 88 years. Of course: above average. As she was.

In our investigation we went through 10 biographies. And we learned many things. Ten common people in a special care home for deaf elderly. Those people happen to be or were becoming blind as well. Helen Keller’s biography is a great mirror for the ones who are dealing with deaf and blind people. She was very special.

But like I said: Deaf and blind are as common as special people and as special as common people. The work is really worth the effort. But remember: a smile is just an encouraging beginning, not the final goal. Just give some soul and let the soul come out.

Ottawa Sept. 2004.
Reach conference

Otto B.M. Fritschy, social geriatrician
Mental Health Center "De Riethorst"
Dep. for Deaf and Hard of Hearing
Willy Brandtlaan 20
6716RR Ede
The Netherlands
Tel: 00 31 318 433610
Fax: 00 31 318 433689
o.fritschy@degelderseroos.nl