Internaf-News May1999 Page 1Back to Index

SUPPORT by Joe Villa

One of Webster’s definitions of support is "to keep something going"

I was out of it for some time as many are well aware. However, just knowing that there were so many praying for me and just keeping me in their thoughts kept me going every day. I just wanted to thank all of you for the support you showed me during my time of much needed rest. From what I have heard, the Internaf group remained faithful to supporting one another and not condemning each other’s opinions. It is the strength of others that we must continue to draw upon, especially when we are down. Knowing that we will not be broken by what we say allows many of us to truly speak our minds and let the emotions flow. These diseases are so scary at times, especially the unknown and the unfamiliar territories we are forced to face. Each day, new challenges await us. Will today be the day that my life is changed permanently? Will I fall, and not be able to get up? Will I wind up in the hospital, never to leave on my own power? These are frightening questions we all live with. These are situations we fear but must maintain the mentality of "this may not be the day!"

Fear is an emotion everyone has to live with. If we let fear conquer us, we would never even get out of bed. There are many that are beaten by fear. I have seen them. I have also seen many more that have subdued it. Conquering fear, well, I can’t say whether that ever totally possible. However, by the support of others who face the same fears, we will keep going!

Just a thought, and God Bless!

Thoughts on Independence by Thresia Eaton

July 4th is a time of parades, picnics, barbecues and those firework displays. The holiday was first observed on July 8, 1776 and declared a legal holiday in 1941 on July 4th.

In 1776, Thirteen Colonies of North America declared their Independence from Great Britain, making them the United States. This Declaration of Independence is the most important historical document of America. Its purpose was to ensure that all people are recognized as created equal and "are endowed by their Creator with certain unalienable Rights among which are Life, Liberty and the pursuit of Happiness. Whenever any form of Government becomes destructive, it is the Right of the People to alter or to abolish it, and to institute new Government."

Students today have no concept of the phrase "all men are created equal." They have no understanding that our founding fathers were deadly serious when they said that they were founding this nation on belief in a Supreme Being.

Life must have meaning. But there can be no meaning to life without freedom; for example, the freedom to choose to worship God in our schools, as the Founding Fathers did, or the choice to hold a prayer gathering. This nation was founded on God by our Founding Fathers, not on a "do as you please mentality." The law of the land was decided clearly on the recognition of a Supreme Being to whom we are all accountable.

Liberty is the one thing you can’t have unless you give it to others, like the "Golden Rule." We must first have faith in God before we can enjoy the blessings of liberty.

The Declaration of Independence did not proclaim the rights to happiness, but only the right to the "pursuit" of happiness-the right to roll up our selves and work and fight for happiness.

Celebrate the Fourth of July with fireworks and festivities-but also celebrate it by setting aside a time to thank God for his blessings on the United States.

For more information on the Fourth of July & the Founding Fathers go to WallBuilders Internet site at www.wallbuilders.com

I hope all have had a safe and happy holiday,!

Folklore & Humor by Martin Burke

July 1
Canada Day

Kalends of July
Weather Marker
If July the first be rainy weather,
It will rain for four more weeks together.

July 3
Dog Days Begin
Traditionally the Dog Days mark the hottest part of the year. The Dog Star, Sirius, rules them.

July 4
American Independence Day

July 5
Venezuela Day

July 7
The Consualia
Feriae Ancillarum
Roman festival of Consualia commemorates Consus--the God of Harvests. It is also Feriae Ancillarum--the Festival of Handmaids (the Maids Day Out). This day the maids of Rome were beyond the control of their mistresses.

Tamabata/Star Festival of Japan

July 10
Lady Godiva. It is said that the lovely lady rode through Coventry on this day.

July 14
France Day

July 15
The Ides of July
Olympic New Year

July 19
Adonia
The sacred drama of the wedding of Adonis and Aphrodite is celebrated.

July 20
Colombia Day

July 21
Belgium Day

July 23
Neptunalia and Salacia
The celebration of the sea god, Neptune and his wife, Salacia. She is the goddess of wide open and salty sea. She also rules over the springs of mineralized waters.

July 24

July 25
Furrinalia
Italian celebration, similar to the one on July 23. Furrinalia was an ancient goddess of springs.

Parents Day (US)

July 26
Sleipnir
Sleipnir is the steed used to travel to other levels of consciousness. The Astrau festival is dedicated to Odin's 8-legged steed, which takes its rider to the three world.

July 27
Domhnach Chrom Dubh
Irish sacrificial god--he is connected with the festival of Lammas.

July 31
Lammas Eve

An Irish Pun....

Lura, the Countess of Killarney, was on a world tour with her husband, the Count. They were staying at an Intourist hotel on the edge of the Ural Mountains and were scheduled to begin an escorted horseback tour of the area early the next morning.

Lura had developed a good tan a month earlier on the beach at Nice, but now she noticed that it was beginning to fade. Not having anything scheduled after lunch, she took a blanket and wandered off in search of a secluded spot where she could touch up the tan a bit. Unfortunately,Lura failed to realize that at high attitudes the rays of the sun were much more damaging than at sea level. Even worse, she fell asleep. She awoke, feeling rather uncomfortable. Dressing gingerly, she limped back to the hotel to have her husband assess the damages and the prospects for the morrow.

After one look he delivered his verdict: .... "Tour all Ural, Lura? Too raw, Lura. Lie."


Upon entering the little country store, the stranger noticed a sign saying "DANGER! BEWARE OF DOG!" posted on the glass door. Inside he noticed a harmless old hound dog asleep on the floor beside the cash register. He asked the store manager, "Is THAT the dog folks are supposed to
beware of?" "Yep, that's him," he replied.

The stranger couldn't help but be amused. "That certainly doesn't look like a dangerous dog to me. Why in the world would you post that sign?"

"Because," the owner replied, "before I posted that sign, people kept tripping over him."


''He who is void of virtuous attachments in private life is, or very soon will be, void of all regard for his country. There is seldom an instance of a man guilty of betraying his country, who had not before lost the feeling of moral obligations in his private connections.''
--Samuel Adams

"The Constitution may not be perfect, but it's a lot better than whatever the politicians are using these days."

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Remember, half the people in the world are below average!

Learning to Accept the Handicapped as Regular People by Catherine Arnold

I met Elisabeth in 1981.  I was swimming in the indoor pool of a medical facility, and she arrived in a wheelchair and was transferred to the water for therapy.   Elisabeth’s legs ended just above where her knees had been.  She got over my shocked expression, and I got over my embarrassment for staring.  We got to know one another, and I learned that she had recently lost her legs in a car accident.   She was all of eighteen.  Over the next couple of weeks, my husband and I went with her to the zoo, shopping and out to eat.  I received an education in what a challenge stairs can be, as well as the stares of strangers.

All able-bodied people should learn to accept handicapped or disabled people as regular people.  Due to many misconceptions, this will require rethinking attitudes.   However, to do so benefits everyone.  It gives the disabled back their dignity and sense of humanness.  It allows the able-bodied to see the disabled as entire humans, not just the sum of their disability.

People who live with a handicap or disability ARE regular people.  They have feelings, dreams, and goals.  They have regular problems and frustrations.  They need a sense of belonging and a purpose in life, just like the able-bodied majority.   It’s amusing, in a way, that we categorize those with handicaps or disabilities as “different.”  Life for everyone is filled with challenges.   Life is capricious.  The change from living in an “able” body to living in a “disabled” body can occur at any time.  And what makes a body “able” or “disabled” anyway?

Here is a dictionary definition of “handicapped”:  to be physically or mentally disabled; collective term for such persons.  “Disabled” is defined as to be unabled, unfit, incapacitated.  However, the latter definition is too simple and borders on being insulting if one interprets it to apply to the whole human being.

The range of physical disabilities runs from the “invisible” -- those that may not be apparent at first glance, (e.g., serious heart problems), to more obvious forms (e.g., paralysis, loss of limbs, loss of nerve function, disfigurement).  Mental handicaps cover a spectrum from dyslexia or Tourette's Syndrome to severe mental retardation.  Also, some thought must be given to how a person received a disability.   Those born with conditions have learned to adapt to their lives in a different fashion than those whose disabilities arose later in their lives, whether due to an accident or a condition that develops over the course of the individual’s life.

Today, we can define, treat and care for a great number of conditions competently and with increased awareness.  Awareness leads to new attitudes, making it easier for the disabled to lead fulfilling lives.  It wasn’t always so.  In her essay “Disability and Society Before the 18th Century – Dread and Despair,” Margaret A. Winzer provides a very informative historical perspective.  Winzer cautions that in order to gain insight into the historical treatment of the disabled, one has to consider the prevailing living conditions of the people.  Winzer states that through most of history life was short, difficult and painful, with a high rate of child mortality and that although documentation is scarce, one can assume that disability was common due to living conditions (war, epidemics, poor nutrition) and non-present or inadequate medical care.  It was only when humans went from being hunter-gatherers to an agricultural way of life that care of the disabled could become a concern of society.   “The ancient Egyptians,” Winzer says, “were the first to document an interest in disabilities and disabled individuals,” making reference to the Egyptian Ebers Papyrus from 1550 BCE (Winzer 81).  The author states that the blind (water-borne blindness is still common in Egypt today) were instructed in music, poetry and massage, allowing them to lead productive lives (Winzer 81).

Winzer describes the ancient Greek practice of infanticide and the power of life and death vested in a male head of household in ancient Roman (Winzer 82).  The prevailing belief, Winzer says, was that the gods and/or demons were responsible for human afflictions (Winzer 85).  But even ancient doctors discounted superstition and looked for cures based on physical observation (Winzer 85).  Winzer states that Aristotle’s conclusion that deafness was more crippling to the intellect than was blindness governed scientific and philosophic views of deafness until well into the 1700’s (Winzer 86-87).  The most enduring legal treatment of the disabled, Winzer says, was through the Code of Justinian, which was created in 533 CE and which consolidated earlier laws; the Code’s Corpus Juris Civilis became the foundation of laws in most of Europe up to the mid-1700’s (Winzer 88).

After the fall of Rome, Christianity rose from being a minor cult to a socially and politically controlling institution.  Monastic life grew and afforded the disabled some protection from harsh living conditions; hospices were erected. (Winzer 90).   However, Winzer tells us, St. Augustine of Numidia declared that the deaf were excluded from church rites because of the words of St. Paul that “faith comes by hearing”  (Winzer 91).  When the Council of Toledo, in the fifth century, absorbed his teachings on “miraculous healings,” another unfortunate trend towards the disabled was set in motion.  “Epilepsy and other nervous disorders ceased to be primarily viewed as bodily diseases . . . but instead [came under the authority of the Church since they were believed to have a divine or evil cause]”   (Winzer 91).  With the reemergence of urban life in 1000 CE, the church’s influence continued to grow but still excluded the disabled; restrictive laws continued to disenfranchise the disabled.  The mentally retarded, in this time, were alternately viewed as being possessed by evil spirits or being in direct communication with God.

In 1150 CE, “the church embraced the doctrine of original sin” (quoted in Winzer 92, author quotes Durant).  At the end of the Middle Ages, the Black Death arrived, reducing the population of Europe by one-third within only four years. The appearance of this great plague, combined with the acceptance of the new idea that humans were basically evil (original sin), created an “end of the world” mentality, making the lot of the disabled even more precarious.  Heretics and witches were sought out by the Inquisition, in the new colonies as well as in Europe.  It is estimated that witch trial victims exceeded 100,000, eighty percent of whom were women (Winzer 94).  I can only wonder how many of those victims were mentally or physically handicapped persons.   Winzer summarizes the victimization of the disabled during the Inquisition   and witch trials in this statement:  “Sawyer (1989) points out that witchcraft lies at the intersection of the biological, existential, and social worlds of the infirm”  (Winzer 95).   I find it disgraceful that the very institution that should have been exemplifying Christ’s mandate of compassion chose, instead, to promote maltreatment of the disabled and deny them the comfort of faith.

Even as some were pursuing witches, enlightened thought began in the Renaissance was gaining a toehold, as advances in science and medicine were being made.  Medical advances included dissection and anatomical studies.  Gironimo Cardano, Italian physician, spoke out against witch hunting, pursued scientific causes and was one of the first to encourage special education.  However, the only institutions for the disabled remained the few hospices erected during the rise of Christianity in Europe (as of about 300 CE).  Only with the advance of leprosy did the number of care facilities increase.  As leprosy abated, leprosariums began to be converted to institutions for the insane (Winzer 98).

“Unlike the monasteries and hospices that arose to save disabled persons from a vile world, the institutions that developed from the early seventeenth century served to protect society from the physically, intellectually, and socially deviant and dependent persons in its midst” (Winzer 99).  These institutions were overburdened and abused by society and those who wanted to rid themselves of the troublesome people in their lives.  They became a convenient repository for the poor, prostitutes, political dissidents, unwanted wives, and so on (Winzer 99).  Treatment in these institutions consisted of strict and harsh treatment.  As was the case earlier in history, the handicapped were again viewed as a source of entertainment:  The general public could, for a fee, visit asylums on a Sunday afternoon (Winzer 100).

Beginning in the Renaissance, the deaf became the focus of early attempts at special education, followed by the blind, then the mentally handicapped.  It was thought that establishing how the deaf learned and gained language could provide important insights into the development of mankind and culture.  Spain spearheaded these efforts to educate the deaf.  Inheritable deafness was common in Spain’s aristocracy and remnants of Justinian inheritance codes made education of the deaf aristocracy a matter of great importance.  Pedro Ponce de Leon, the monk who devised teaching methods and provided his deaf pupils a very extensive education, stated “’above all, they were versed in the doctrine, Politics and Discipline from which Aristotle excluded them’” (Quoted in Winzer 101).  “Most importantly, perhaps, Ponce de Leon was the first successful special educator, and 1578 the year in which special education truly began”   (Winzer 101).  Jean Pablo Bonet built on de Leon’s work and “published the first practical treatise on the art of teaching the deaf” in 1620 (Winzer 101).

Today in America, we have many laws and measures in place to protect and assist the handicapped, most notably, the Americans with Disabilities Act (ADA), enacted in 1990, and the Individuals with Disabilities Education Act (IDEA).  “The ADA prohibits discrimination on the basis of disability in employment, programs and services provided by state and local governments, goods and services provided by private companies, and in commercial facilities” (ADA Homepage).  IDEA ensures that “all children ages 3 through 21 enrolled in public schools who need special education and related services receive a free, appropriate public education regardless of the level or severity of their disability” (WPD Web Page).  Attitude and perceptions, however, cannot be regulated.  They must be relearned through exposure and education.            I believe that the exposure achieved by the mainstreaming made possible through ADA and IDEA is helping the American public achieve a more balanced view of life with disability.

Cultural differences in the treatment of the handicapped are many.  I can only personally draw comparisons between the United States and Germany, although I will seek to gain more global insight at some point.

Germany’s government is a social democracy and as such provides its citizens many benefits.  Of course, taxes are also high; this is also the case in other social democracies (e.g., the Scandinavian countries).  Although a great many benefits are provided disabled individuals, there appears to be an entrenched system of isolating those with handicaps from the rest of able-bodied society.  Yes, you see people in wheelchairs out and about.  You just don’t see them in the public schools and in regular places of employment.

When my son, in his eleventh year, started attending Gymnasium (secondary school in Germany), he had already been experiencing the first difficulties related to his condition.  A few months earlier, he had endured a two-week, in-house, battery of tests at the University Pediatric Neurology Clinic.  We received a tentative diagnosis of spino-cerebellar ataxia, possibly Friedreich’s.

I provided this information to his teacher.  I was never offered a consultation with a guidance counselor; there was never any attempt on the part of the school to learn about my son’s disability.  He faced increasing hardships:  a decline in his motor skills that prevented him from doing his schoolwork at the feverish pace considered normal in upper-level German schools; a lack of understanding and interest on the part of the educators; and the relentless teasing and bullying considered normal in a German schoolyard.

Within two years, my intelligent son was failed by a school system that didn’t care about his disability.  It came to our attention that there was not a single disabled (or wheelchaired) student at this school; the school even has ramps and an elevator, which the faculty uses.  On a difficult October morning in 1996, my son asked me if he could attend the American school here.  At registration, I mentioned that my son has a neurological condition that makes writing and physical education difficult for him.   No sooner was he registered, then we were contacted by the school special education coordinator, who informed us of ADA and IDEA.  We were told about this law requiring schools’ modifications in order to provide individuals with handicaps an equal education.  In October 1996, we also received a confirmed diagnosis of Friedreich’s Ataxia.

My son has the normal growing-up difficulties of an adolescent, but he continues to receive the assistance and support he needs.  He is able to get an education in the mainstream, which is exactly what he wants.  He does not want to be isolated.   This opportunity, this system, has afforded my dear son the chance to be included.   It has done great things for his self-esteem, which was at ground-zero in the German school system -- a system that so preemptively decides where the handicapped belong: away from the mainstream.

Mike looks forward to going to college in the United States, even though he could get a free college education here.  But I think the prior paragraphs illustrate why my son has little interest in furthering his education here.

Sometimes, though, I do work on him to use his newfound confidence to work for change in the systems here.  He is, after all, fluent in English and German.  Working for change here could be a big challenge for certain.  Not too long ago, a billboard sponsored by Aktion Sorgenkind (an organization for handicapped children) was emblazoned with “Take the next accessible bus --  it departs at 8 o’clock – in 2010.”  Volker Krause, in his article “Living with Disability (Having More Freedom in the U.S. Than in Germany),” mentions that he left Germany six years ago.   At the time he left, he said there wasn’t much handicapped accessibility in the public domain.  It seems to me that accessibility appears to have improved a little from what he describes.  I am, however, in shock at something he describes having taken place in Germany a mere six years ago:  Krause describes a lawsuit that took place in 1993 in the north German town of Flensburg, citing that the “court supported the claim of a vacationing couple that their holiday had been spoilt by the presence of disabled people in their hotel.”  Once again, this bears witness to the general attitude of segregating rather than integrating the disabled in Germany.

Part of working for more acceptance of the disabled involves more acceptance by and in the media.  This means that the media, in all its forms, must not shy away from showing handicapped individuals.  Physically and mentally disabled persons are as much a part of the reading and viewing public as the able-bodied majority.  An analogy can be found in the fact that African-Americans who are now, on the whole, much less discriminated against than in earlier decades, are now SEEN more often, too.  They are no longer an “invisible minority.”  It is equally important, however, that negative stereotypes not be carried forward.  Just as the Amos and Andy stereotype of African-Americans has disappeared, so too should the negative images of the disabled.  Kathi Wolfe, a blind journalist, mentions in her article “Ordinary People:  Why the Disabled Aren’t So Different,” that even the recent Disney feature “The Hunchback of Notre Dame” can negatively affect the way children learn to interact with the disabled.

On the whole, America has made many advances in fair treatment of the disabled.     But was it only fifty years ago that a popular president, crippled by polio, felt he couldn’t be routinely seen in public in his wheelchair (except where it showed empathy, as in his visit to disabled war veterans)?  Why did he not trust more in his strong personality?  Why did he fear having a so-called weak image because of his disability?  Franklin D. Roosevelt was in the best position to have really furthered acceptance of disability.

Even so, some inroads to inclusion have been made.  Several years ago, there was a mentally handicapped character on “L.A. Law.”  He was, however, portrayed by a non-handicapped actor.  It took a few more years for television to warm up to the idea of actually hiring a real-life, intellectually handicapped person, in the form of Chris Burke.  More exposure for professionals like journalist John Hockenberry will help foster acceptance of individuals with handicaps.  Most people are familiar with well known individuals with disabilities, for example, Christopher Reeve, Stephen Hawking, and, of course, Helen Keller.  It’s too bad that most people tend to think of these individuals as handicapped first.  When one puts aside the “inspirational factor,” it becomes clear that these are talented individuals with great gifts to share.  We need to become a world where Helen Keller is remembered as a “vibrant, opinionated, three-dimensional figure” (Wolfe), not just a famous blind-and-deaf lady.  Helen Keller was a socialist, an early feminist, supported the NAACP and labor unions, and opposed child labor and capital punishment (Wolfe).  Christopher Reeve is a very talented director, actor and author; Professor Stephen Hawking is a renowned physicist who wrote A Brief History of Time and is co-founder of the “big bang” theory of the origin of the universe.

In order to gain more insight, I conducted a survey of individuals with ataxia, most of them with Friedreich’s.    I sought to find out about their experiences with the able-bodied and their ideas for gaining more acceptance.  My interview subjects responded by e-mail after receiving my questionnaire from FAPG or InterNAF.  I received twelve responses.  Respondents ranged in age from 15 to 50; almost all had been living in awareness of their condition for about 10 years.   Nine of my respondents use a wheelchair to one extent or another.  One respondent, upon reading my question, “Are you wheelchair-bound?” said she had visions of locks and chains;  she reminded me that a wheelchair is a mobility aid.   Since FA affects people differently, I probably, instead, could have asked about the ability to walk.

I asked, “What is the worst thing about having FA [or another ataxia]?”   Many cited aspects of their condition (disease progression, difficulty walking, spasticity, loss of fine motor skills, a shortened life expectancy).  Others mentioned a change in life style (giving up driving; loss of independence) and that the condition isn’t as well known as, for example, multiple sclerosis or muscular dystrophy.  Several mentioned that strangers are rude or do not treat them as “normal” or “real” people with their own personalities and feelings – strangers judge by “appearance first and heart last” (Ashton).  It was also mentioned that because they see a wheelchair, strangers sometimes assume the user is mentally handicapped also (FA does not affect the mind at all).

In answer to the question, “What was the worst reaction you’ve experienced from someone?” respondents told me they endured accusations of being drunk (“ataxia” means incoordination – the most common symptom); being ignored; being treated like a small child; being stared at and spoken about (as if deaf); being called a “crippled freak” by a member of the opposite sex.  A young mother was asked whose child she was babysitting (the assumption being that she couldn't possibly be a mother).   Another respondent described how a woman with a baby stroller coming his way on the sidewalk deliberately crossed the street to avoid encountering him, then crossed back afterwards.

To my question, “What is the best reaction you’ve experienced from another person?” my interview subjects told me about being treated as an ordinary person; a boyfriend’s loving defense; “having a girl sit on my lap and telling me I’m cute” (M. Arnold); strangers’ admiration for coping with disability; being asked to explain the condition as well as being thanked for helping another learn to cope; and the innocent and honest curiosity of children.

I questioned them about their reactions to (1) a stranger’s questions about the disability; (2) a stranger’s stare; and (3) the directness of small children.   All responded that they thought it OK for a stranger to ask, in a polite fashion, about the disability and most welcomed the opportunity to inform people.  In response to staring, most tended to ignore the rudeness; some stared back or asked the rude person what they were looking at; many countered with a smile, a wink or even by blowing a kiss.   As indicated above, most people truly welcomed the opportunity to tell children (in simple terms) about their condition.

In response to my question, “Do you feel your parents and siblings are overprotective of you?” a slight majority felt their families were overprotective (in varying degrees).  Most lived on their own, in “assisted living” arrangements, or were married; those that were living at home, for the most part, desired more personal freedom and plan to live independently at some point.

Finally, I asked about what could be done to help the public become more understanding and accepting of individuals with challenges.  Most felt that public awareness through education and more media exposure is the key to gaining more acceptance; some pointed out that acceptance starts with the way children are raised.  A few felt that the able-bodied should receive classroom instruction on disability acceptance, or undergo “hands-on” training, for example, by having to use a wheelchair or be blindfolded for twenty-four hours.

I think that the difficulty an able-bodied person has in learning to accept the normality of the handicapped has several aspects.  Obviously a first is usually curiosity.   “How did you become disabled?”  For most people, social training kicks in and prevents us from asking nosy questions immediately.  Then, too, most of us were raised to assist others when necessary.  br> 

The key means of developing more acceptance of disability in society, then, include educating the able-bodied, mainstreaming the handicapped, and increasing exposure of disability, and the disabled, in the media.  While learning is frequently a slow, tedious and sometimes painful process, it always brings rewards.  Acceptance is also enhanced if we apply the Golden Rule in our daily dealings and learn to treat others, especially the handicapped, as we would want to be treated ourselves.  Certainly let’s realize that people with mental and physical disabilities have many ABILITIES to offer.   When we treat people with handicaps as regular people, we respect them as individuals, thereby also giving them the chance to help us with their many and all too frequently unrecognized talents.

HSP Conference

HSP Conference Website: www.geocities.com/HotSprings/1988

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Last modified on Thursday February 03, 2000.