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Attitudes and Policies on Blindness/Visual Impairment and Braille Literacy

By Nalida E.L. Besson, JD/MPA 2002
Written in Disability & Public Policy class at
Suffolk University Graduate School of Management
December 1999
 
Executive Summary:

 “The real problem of blindness is not the lack of eyesight.  The real problem is the misunderstanding and lack of information which exist.  If a blind person has proper training and opportunity, blindness is only a physical nuisance.”  (National Federation of the Blind, 1999).  This is a saying of the National Federation of the Blind (NFB), the largest national organization of people who are blind as well as parents and family members of people who are blind.

Attitudes toward people who are disabled, in general, tend to not be too positive.  Negative attitudes, perceptions, and prejudices are some of the factors that cause poor public policies.  They often affect the kind of “rehabilitation” and job training blind people receive.  They sometimes affect the way other people relate to and treat blind people.  Those factors also affect the type of education blind people receive.

People who are blind are not only musicians like Stevie Wonder or Ray Charles, nor broom makers in a factory.  They are judges, lawyers, accountants, secretaries, librarians, educators, physicians, social workers, and a host of other professions.  (American Foundation for the Blind, 1997).  In short, people who are blind or visually impaired are as diverse as the general population.

Not all blind people are totally blind.  Legal blindness is at least 20/200 corrected vision in both eyes or a restricted field of vision of at least twenty (20) degrees.  A person who has 20/70 to 20/200 vision, however, is also visually impaired.  (Kinder, 1999).  For purposes of this paper, references to blindness will refer to both legal blindness and visual impairment.

Causes of blindness range from glaucoma, cataracts, nystagmus,  and microphthalmia to diabetic retinopathy, high blood pressure, and eye injury.  About half of the people who are blind are over age sixty-five.  (NFB, 1995; Massachusetts Association for The Blind, N.D.).

Braille literacy has always been an important issue in the blind community.  Older generations of blind people who were blind as children were more likely to learn to read in Braille.  However, younger generations of blind people are not always taught Braille.  In 1968, about 44% of blind children could read Braille.  In 1993, less than 9% could read Braille and 40% could not read either medium.  (NFB video, 1993.).  The good Braille reader is able to read 200 to 400 words per minute.  (Ianuzzi, 1999).

The unemployment rate for people who are blind is about  70%. (NFB video, 1993., American Foundation for the Blind, 1996.).    The majority of blind people who are employed are those who are Braille literate.  (NFB video, 1993).
Teachers were known to tell parents that a child with low vision is not “really blind” and that the child should just concentrate on large print because Braille was outdated and too difficult to learn.  (NFB video, 1993).  Parents often followed the teachers’ advice, wanting to believe that the child was not blind.  What most often resulted because of these attitudes toward blindness and Braille were blind children who grew up to be either functionally illiterate or unable to read any medium with decreasing vision.  (Ianuzzi, 1999; NFB video, 1993).  This is not to say that the adults were intentionally wanting to harm the children.  Preconceptions and hence attitudes, however, affect our actions, and those actions have an impact on the children.

In the last decade, the organizations of the blind and other advocates have worked to change this trend and to insist on Braille instruction for children who are visually impaired, particularly if the condition causing blindness could further reduce vision.  Advocates continue to work on Braille legislation.  Also, Braille publishers and transcription services are producing more titles and more books overall.  (Braille Revival League, 1999).

If people believe that it is ok to be blind, then they will better accept Braille as an alternative mode of reading and writing, and potentially increase literacy among blind children and adults.

Causes and History of Blindness:

    Definitions:

The medical definition of legal blindness is 20/200 or less vision (corrected) in both eyes or a restricted field of vision of at least twenty (20) degrees.  A person with 20/70 to 20/200 vision, however, is also visually impaired.  (Kinder, 1999; Jernigan, 1995).

Dr. Kenneth Jernigan (1995), a leader in the National Federation of the Blind, also gives a functional and sociological definition of  blindness:  “One is blind to the extent that he must devise alternative techniques to do efficiently those things which he would do with sight if he had normal vision.”  (p. 2).  It is important to note that Dr. Jernigan uses “alternative” techniques rather than “substitute” techniques because alternative techniques are not inferior to techniques which a sighted person may use; alternative techniques are just different choices of techniques.

In the many articles that I read before writing this paper, I found that a lot of blind people consider blindness to also be a characteristic.  Many reject the people-first movement because it forces political correctness in language when some consumers and consumer groups themselves want to call themselves something else besides the “preferred language “ of people with something.  (Vaughan, 1997, 1999).  They are obviously people first.

In his article, “People-First Language:  An Unholy Crusade,” Dr. Vaughan, a scholar in disability studies, says “why not work on changing the connotations of what it means to be blind—to challenge old understandings with new insights about blindness?  Many blind people are proud of the accomplishments of their brothers and sisters.  Just as black became beautiful, blind is no longer a symbol of shame.  To say, ‘I am blind’ or ‘I am a blind person’ no longer seems negative to many, particularly those groups with existential interest in the topic.” (p. 2).

Dr. Vaughn’s article led me to really think about blindness as a characteristic.  Blindness is a part of who a blind person is.  After all, blackness is part of who I am and I am obviously a person first.  There have been movements to call black people African-American instead of black and even to say “someone who happens to be black.”  But, although I am of African descent, I am also of Haitian descent and some other black people in America are of other descents and have never felt comfortable with the political correct African-American term.

I do not just happen to be black.  I am black even though I am also a lot of other things.  I don’t happen to be a woman.  I am a woman.  So I finally understand why many blind writers stick to identifying themselves as a blind person.  They are not ashamed of what society may see as pitiful or shameful.  Blindness was always or has become part of who a blind person is.

    Causes:

There are many causes of blindness.  Some of the major causes of blindness include cataracts, glaucoma, diabetic retinopathy, macular degeneration, retinitis pigmentosa, and retinopathy of prematurity.  (NFB, 1995).  Some people are blind from birth while others become blind as children or adults.  Some are blind due to accidents, others through disease or congenital conditions.

        Cataracts:

Cataracts are the clouding of the lens of the eyes.  They look like white dots in the middle of the eye.  If they are big and dense enough, cataracts may prevent light from passing through the eye and may blur vision.  (NFB, 1995).  There are many people who get cataracts as they get older or through trauma to the eyes.  However, some people are born with congenital cataracts.

Cataracts (as well as nystagmus—shifting of the eyes, and microphtalmia—very small eyes) have been “handed down” from generation to generation in my husband’s family.  My husband was born with them; his father was born with them; his grandmother was born with them; and they go back as far as the family can remember.  Our daughter was also born with cataracts.

For most people who get cataracts as adults, they have a lensectomy which is surgery to remove the clouded lens if it troubles their vision.  Doctors implant an intraocular lens into the eye.  (NFB, 1995).  Normal vision is usually restored with corrective lenses.

Surgery is more complicated and vision more difficult to restore for people born with cataracts.  For those who have surgery as infants, an intraocular lens is generally not implanted in the eye.  The children wear either special aphakic (meaning without a lens) contact lenses or thick glasses.  After surgery, many patients develop secondary glaucoma.
Although there is no known cause for the secondary glaucoma, world-reknown pediatric ophthalmologist David S. Walton (who happens to be my daughter’s ophthalmologist) determined from a sample of patients that there was a post cataract surgery angle defect in about 96% of the patients.   87% had secondary glaucoma one or two years after surgery.  (1997).

        Glaucoma:

Glaucoma is high intraocular pressure (IOP).  There is fluid in the eye that flows out and drains through the back of the eye.  This is the intraocular pressure.  When the fluid builds up and causes pressure, it can damage the optic nerve and thus, decrease or blur vision.  (Blake, September 22, 1999).  Some people with glaucoma have no symptoms while others have pain and pressure in the eyes.  In some cases, medication is helpful in controlling IOP.  But sometimes surgery is necessary.  (NFB, 1995).  In some cases, doctors place an implant in the eyes, which help to control eye pressure by managing the flow of fluid in the eye.  My daughter has the Ahmed implant in both her eyes and so far, her pressures have been stable.

         Diabetic Retinopathy:

Some people who have diabetis may develop diabetic retinopathy.  Blood vessels in the retina (the lining at the back of the eye) may become abnormal and burst.  Also, the retina might detach.  (NFB, 1995).  Treatment includes laser surgery to close the blood vessels or reattach the retina of the eye.

        Retinitis Pigmentosa:

Retinitis Pigmentosa (RP) is a degeneration of the retina and choroid.  It is usually caused by inordinate amounts of pigment in the eye.  (NFB, 1995).  RP generally begins developing when children are pre-teenagers or teenagers.  It usually starts with poor night vision, then progresses to narrower vision fields, and often leads to total blindness.

There is no current treatment for RP.  However, researchers at John Hopkins University Medical Center are experimenting with an intraocular lens retinal prosthesis (IRP).  The IRP is tested on patients’ eyes for a few minutes to test how it stimulates the retina and offers some sight.  The IRP is still in the development phase and may eventually restore partial vision for people with retinitis pigmentosa and adult onset macular degeneration who have had several years of vision before losing sight.  (CNN, December 3, 1999)

Although the IRP is still in the development and research phase, it has received a lot of media coverage because the famous singer Stevie Wonder has spoken to John Hopkins’ researchers about the IRP.  Since Stevie Wonder has been blind since he was an infant, the IRP may not be helpful for him.  (CNN, December 3, 1999).

        Macular Degeneration:

Macular degeneration is a common cause of blindness among older people.  It is the degeneration of the macula which is the part of the retina that gives the clearest central vision.  Some treatments include sealing blood vessels and removing old tissue to allow new tissue to grow.  (NFB, 1995).

        Retinopathy of Prematurity:

Retinopathy of prematurity (ROP) occurs in some premature babies.  The range of visual impairments that ROP causes varies widely.  Some children may be near sighted, some may have glaucoma, and others may be totally blind.  Depending on the degrees of ROP, some people with ROP may have their eyes removed.  (Blake, September 22, 1999).

        History, Treatment, and (Mis)conceptions:

An old Middle Eastern proverb says, “When you see a blind man, kick him.  Why should you be kinder to him than God has been?”  (Maurer, 1989, 1999).  This has been one of the unfortunate perceptions of blindness—that it is a curse from God.  The negative perception is what has caused blind people to be discriminated against for centuries and looked upon as cursed beggars.  (Jernigan, 1973, 1999).

Dr. Jernigan writes that the history of mistreatment of blind people is often the only history told.  History tells that blind people were totally powerless and helpless, often abused and killed and then later patronized and kept in institutions.  But history fails to tell of the many accomplishments of blind people, focusing instead on negative things done to blind people rather than positive things done by blind people.  Most of the historians who have recorded positive information about blind people were themselves blind.  (Jernigan, 1973, 1999).

As Dr. Jernigan points out, it is not bad intentions that lead historians to focus on the negative alone.  It is misconceptions and preconceptions about blind people that society held which caused and sometimes still cause society-at-large to think of  blind people only in negative lights.  Giving the complete history, including both the suffering and the accomplishments of blind people will allow society to get rid of some of their misconceptions.  (Jernigan, 1973, 1999).

Besides recording the tragedies of blind people, more historians should focus on some of these heroes:  John de Turcznow, aka Zisca, who, after becoming blind in battle during the fifteenth century, successfully strategied and led his Bohemian army against the emperor’s army;  George Frederick, Duke of Cumberland who in 1851 became King George the Fifth; Prince Hitoyasu of Japan who brought fellow blind people into his court over one thousand years ago; Nicholas Saunderson who was totally blind since childhood and succeeded Sir Isaac Newton as Cambridge University’s Chair of mathematics with Newton’s support but amid resistance from others because of his blindness; and a whole list of  other people who performed great feats and accomplishments and showed that blind people were not the helpless people that society depicted.  (Jernigan, 1973, 1999).

I had always read of and seen films and documentaries on Helen Keller and Anne Sullivan, a brilliant writer and excellent teacher respectively who were both extraordinary women.  But I had never heard about or read about so many other great blind people until reading Dr. Jernigan’s article on history.

Film and literature has also often portrayed blind people in negative lights, further increasing misconceptions that affect negative attitudes against people who are blind.  In 1934, the film “It’s a Gift” depicted a stereotypical blind man who is clumsy, grouchy, and helpless.  (Maurer, 1992; 1999).

But even in 1991, negative stereotypes were alive.  The ABC program “Good & Evil” had a blind character who was a psychologist that had no mobility skills and broke objects everywhere he walked.  The story line had him both hug a coat rack and fondle a man, thinking they were a woman.  (Maurer, 1992; 1999).  ABC took the show off the air after protests from groups like the National Federation of the Blind.

The Mr. Magoo character in the cartoons and movies is one of the most degrading ones.  Mr. Magoo walks around bumping into things and talking to the objects that he believes are people.  (Jernigan, 1975, 1999).  The character is supposed to be amusing.  However, laughing at a negative stereotype of a blind person is not funny but insulting.  A few days after Mr. Magoo aired on television, a blind woman from Indianapolis said that a child spit on her on the street because, the child said, she was Mr. Magoo.  (Jernigan, 1975, 1999).

In literature, blind characters are often depicted either as cursed individuals or people with supernatural powers.  Many are detectives who are not brilliant because of their knowledge but because of a sixth sense and magic that blind people have.  (Jernigan 1974, 1999, p. 3).

Blindness in works of fiction also sometimes makes blind characters appear foolish and gullible as in Shakespeare’s character Gloucester in “King Lear,” or innately evil as in Robert Stevenson’s character Blind Pew in TREASURE ISLAND.  (Jernigan, 1974, 1999).

Many of the writers who have depicted blind people in negative ways are great writers whose preconceptions about blind people have shaped their blind characters.  Books, works of fiction, and films that have misconceptions about blind people have the potential to generate more negative attitudes about blind people in the society.  Some thought that Mr. Magoo was just a funny guy, but his character makes a big statement about the images portrayed of a blind person.

Negative attitudes allow discrimination to take place.  In some states, blind people are prevented from being selected for jury duty.  (Maurer, 1989, 1999).  In one state, the state university denied a blind college student the right to do her practice teaching because she is blind.  In another state, the principal and faculty of a high school removed the name of a blind student as candidate for student body president because he was blind.  (TenBroek, 1957, 1999).  These are just a few examples of how preconceptions that sighted people have of blind people can lead often well-intentioned leaders to make negative decisions and policies concerning blind people.

Braille—Policies Affecting Literacy Among Blind Children and Adults:

Braille is a reading and writing code consisting of a set of six dots.  The arrangements of the dots represent letters and numbers.  People read Braille with their fingers, moving one or more fingers across Brailled text.  Braille can be written with a Braille writer which is a  small machine that resembles a typewriter and has six keys and a space bar.  Braille can also be printed from a computer with Braille software and a Braille printer called an embosser.

Some people also use a slate and stylus which are alternatives to paper and pencil.  The slate is a small metal template with dots of Braille cells.  When paper is inserted into the slate, the stylus is used to push through the cells to write.

There are different grades of Braille.  Grade 1 Braille is uncontracted Braille.  It spells out each and every letter of a word.  Grade 2 is contracted Braille that has 189 contracted forms and takes up 25% less paper space.  (Inclusive Technology, 1998).  Grade 3 Braille is even more contracted.

Braille was invented by Frenchman Louis Braille.  Braille was born in 1809 and became blind due to a childhood accident.  (The Associated Press, 1999).  He went to school at the National Institute for Blind Youth in Paris, France where he found that there were not enough books for blind people to read.  (AFB, 1999).  The old system of reading included raised letters that required a lot of time to read.  (Keller, n.d.).

When Braille was fifteen years old, he invented what is now called the Braille writing method.  The method developed from a “night writing” code invented by Charles Barbier so that military messages could be read at night.  (AFB, 1999).  Braille did not become used widely until the late 1800s.  (Keller, n.d.).  The good Braille reader is able to read 200 to 400 words per minute.  (Ianuzzi, 1999).

Helen Keller wrote that one misconception of many sighted people is that a blind person has a more developed sense of touch.  In fact, she wrote, every person has a “natural sense of touch” which most do not train.  (Keller, n.d., p. 3).  This means that most people are capable of learning Braille.  Some sighted people have learned Braille reading the dots with their eyes or their fingers.  I have begun to learn the Braille alphabet because I will eventually learn Braille to help with my daughter’s education.  I find that my fingers are sensitive enough to recognize the letters.

Braille is a wonderful tool for educating children and adults who are blind or visually impaired.  “Without the word, visible or tangible, there can be no education.  When one thinks of the sufferings of the sightless in all countries before they could read, one does not wonder that it is said in the Bible, ‘In the beginning the Word was with God,…and the Word was the Light of men.’” (Keller, n.d.).

The use of Braille as a method of reading and writing has diminished over the years.  In 1968, about 44% of blind children could read Braille.  In 1993, less than 9% could read Braille and 40% could not read print or Braille.  (NFB video, 1993.).

Teachers often encouraged students to concentrate on large print because the teachers considered Braille outdated and difficult to learn.  (NFB video, 1993).  What most often resulted because of these attitudes toward blindness and Braille were blind children who grew up to be either functionally illiterate or unable to read any medium with decreasing vision.  (Ianuzzi, 1999; NFB video, 1993).

Another problem with literacy among blind children is that many teachers who teach blind children are themselves not too Braille efficient.  In 1993, thirty (30) teachers of the visually impaired took a Braille competency test given by the Library of Congress.  All thirty (30) failed.  (NFB video, 1993).

The unemployment rate for people who are blind is about  70%. (NFB video, 1993, American Foundation for the Blind, 1996).  The majority of blind people who are employed are those who are Braille literate.  (NFB video, 1993).  Obviously, there are other factors, including attitudes towards hiring blind people, that cause such high unemployment  rates.  However, literacy through Braille plays a major role in those who are able to get employment.  (Ryles, 1999).
Ruby Ryles, Ph.D. (1999) has conducted a study revealing that blind high school students who learned Braille at an early age had equivalent levels of literacy with sighted high school students.  Legally blind children who learned Braille as they got older or who never learned Braille had much lower literacy rates than their peers.  (Ryles, 1999).  The study also showed that blind children who have low vision or are partially sighted have a much higher risk of illiteracy than children who are totally blind.

In the vocabulary, spelling, punctuation, and capitalization portions of the test given to sighted and blind children in the study, blind students who received Braille instruction four to five days per week during first through third grades, received higher mean scores than both sighted students and blind students who received infrequent Braille instruction or no instruction at all.  (Ryles, 1999).

On a preliminary study in Washington state of a sample of adults born legally blind, Dr. Ryles discovered that 44% of the participants who had learned to read with Braille were unemployed while 77% of those who had learned to read with print were unemployed.  The first study and this preliminary study shows that “early Braille education is crucial to literacy, and literacy is crucial to employment.”  (Ryles, 1999, p. 3).

Conclusion:

The negative attitudes toward blindness that both sighted and some blind people have plays a role in whether blind people learn Braille.  A teacher saying that this child “can” read print, but that child “has to” read Braille is unconsciously giving the message that print is a better method.  (Jernigan, 1971, 1999).

Frederic K. Schroeder did a doctoral dissertation on perspectives on blindness and policy implications concerning Braille.  He found that “Issues of self-identity and the desire not to be associated with blindness may have as much to do with whether a legally blind individual uses Braille as does the assertion that he or she does not need Braille.”  (Schroeder, November 8, 1999, intro.).

Recently, the organizations of the blind and other advocates have worked to change this trend of diminishing Braille and to insist on Braille instruction for children who are visually impaired, particularly if the condition causing blindness could further reduce vision.  Advocates continue to work on Braille legislation.  Also, Braille publishers and transcription services are producing more titles and more books overall.  (Braille Revival League, 1999).

The Individuals with Disabilities Education Act (IDEA) also provides that a child that is visually impaired should always be evaluated for learning Braille.  Educators must not only evaluate the child’s present need for print and/or Braille but also evaluate the child’s future potential need for Braille which would lead to current Braille instruction. (Castellano, 1998).

The change in the laws and in society’s conceptions about blind people, as well as studies and writings increasing awareness on blindness issues, have definitely helped to improve attitudes toward blind people.  However, issues such as lack of Braille instruction and low literacy rates among many blind children tell us that there is more work to be done on policies and the attitudes that often help to form the policies.
 
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 REFERENCES

     American Foundation for the Blind, (December 1996).  Employment and earnings among people with blindness or visual impairment  [on-line].  http://www.afb.org/employ1b.html.

     American Foundation for the Blind, (April, 1997).  Jobs being done by people who are blind or visually impaired [on-line].  http://www.afb.org/employ5.html.

     American Foundation for the Blind, (1999).  Braille, fact sheet [on-line].  http://www.afb.org/brail_ed.html.

     Associated Press, (July 26, 1999). Asteroid named for Braille [on-line].  http://abcnews.go.com/sections/science/DailyNews/deepspaceone990726.html.
 
     Blake, S., (September 22, 1999).  Information about the eye and causes of blindness [on-line].  http://www.growingstrong.org/blind/eye.html.

     Braille Page, (1999).  The English Braille Alphabet [on-line].  http://www.deafblind.com/braille.html.

     Braille Revival League, (1999).  Statement on literacy [on-line].  http://www.growingstrong.org/blind/brllit.txt.

     Castellano, C., (November 1998).  Your child’s right to read, IN TOUCH, [on-line].  http://www.nfb.org/fr99sf07.htm.

     CNN, (December 3, 1999).  Stevie Wonder hoping for experimental eye surgery [on-line].  http://www.cnn.com/1999/SHOWBIZ/Music/12/03/stevie.wonder/.

     CNN, (August 18, 1999).  Blindness [on-line].  http://www.cnn.com/HEALTH/specials/eye.series/explainers/blindness/.

     Ianuzzi, J., (May 1999).  Braille literacy in America:  a student’s view [on-line].  http://kathyz.home.mindspring.com/ov/ov0599.htm.

     Inclusive Technology, (June 16, 1998).  Braille [on-line].  http://www.inclusive.co.uk/infosite/braille.htm.

     Jernigan, K., (1971, 1999).  To man the barricades, NFB, [on-line].  http://www.blindnet/bpba1971.htm.

     Jernigan, K., (1973, 1999).  Blindness:  is history against us?, NFB, [on-line].  http://www.blindnet/bpba1973.htm.

     Jernigan, K., (1974, 1999).  Blindness:  is literature against us?, NFB, [on-line].  http://www.blind.net/bpba1974.htm.

     Jernigan, K., (1975, 1999).  Blindness:  is the public against us?, NFB, [on-line].  http://www.blind.net/bpba1975.htm.

     Jernigan, K., (1995).  Who is blind?, NFB, [on-line].  http://www.blind.net/bg000000.htm.

     Keller, H., (May 1932).  Magic in your fingers!, AFB, [on-line].  http://www.afb.org/archives/papers/writingsbyhk/w-magic.html.

     Keller, H., (n.d.).  Braille, the magic wand of the blind, AFB, [on-line].  http://www.afb.org/archives/papers/writingsbyhk/w-braille.html.

     Massachusetts Associate for the Blind, (n.d.) Questions most asked about blindness, brochure.

     Malinski, M., (Spring 1996).  Why parents should learn Braille, IN TOUCH, A NEWSLETTER FOR PERSONNEL SERVICE LOUISIANA BLIND OR VISUALLY IMPAIRED STUDENTS, Vol. 3, No. 3, [on-line].  http://www.nfb.org/brailprnt.htm.

     Maurer, M., (1989, 1999).  Language and the future of the blind, NFB, [on-line].  http://www.blind.net/bpba1989.htm.

     Maurer, M., (1992, 1999).  The mysterious ten percent, NFB, [on-line].  http://www.blind.net/bpba1992.htm.

     National Federation of the Blind, (1999).  National Federation of the Blind, homepage, [on-line].  http://www.nfb.org.

     National Federation of the Blind, (1993).  That the blind may read, video.  Baltimore, MD:  NFB.

     National Federation of the Blind, (1995).  Major causes of blindness, [on-line].  http://www.blind.net/bg200000.htm.

     Ryles, R., (Spring 1998).  New research study:  early braille education vital in establishing lifelong literacy [on-line].  http://www.nfb.org/fr99sfl3.htm.

     Schroeder, F.K.,  (November 8, 1999).  Braille usage:  perspectives of legally blind adults and policy implications for school administrators. [on-line].  http://www.nfb.org/brusage.htm

     TenBroek, J., (1957, 1999).  Cross of blindness, NFB, [on-line].  http://www.blind.net/bpba1957.htm.

     Vaughan, C. E., (1997, 1999).  People-first language:  an unholy crusade, NFB, [on-line].  http://www.blind.net/bpg00006.htm.

     Walton, D.S., (1997), Glaucoma:  long term complications of infantile aphakia.  American Orthoptic Journal, vol. 47, p. 47-52.