Notes: The authors are aware that the term "Gypsy" is not favored by the Romani people to whom the term is applied by non-Roma. The term Gypsy is used in the title of this document only to aid in internet searching. For the most part we will use the correct terms: Romani, Roma, or Rom as explained below. We urge informed readers to critique this document. What mistakes have we made? What have we left out? Let us know.
This document is a result of involvement in sponsoring and providing health care for a Romani family from Eastern Europe. We knew little about one another's health or socio-cultural beliefs and practices, and the experience was less than satisfying for all concerned. I hope this document and accompanying links (especially the Patrin Journal) will help others in interacting with the Romani people. Charles Kemp
A few Romani terms are helpful to understanding this culture. Romani, the adjective; Roma, plural noun; or Rom, singular noun, are the preferred terms when referring to people commonly and incorrectly known as Gypsies. Not all Romani people refer to themselves as Roma. Gadje (or gazho) is the plural term referring to non-Roma. An individual Romani household is a familia consisting usually of three generations of six to fifteen relatives. Unrelated familia living cooperatively in a given geographical region is called a kumpania and the vista is comprised of numerous kumpania and can span across a country. Familia who live apart will unite during transitions such as marriage, serious illness and death. There are numerous variations on these basic structures.
Most Roma maintain their social isolation through their own conscious and asserted effort, and through prejudice from non-Roma. In the United States, there are two primary reasons why the Roma are so successful at remaining largely invisible. First, the large number and variety of minority groups in the U.S. afford the opportunity to blend into other cultures, with Roma sometimes presenting themselves as American Indians, Hispanic or southern Europeans rather than Roma. Second, misconceptions arise from folklore and media with the image of the "gypsy" based on either romanticized or pejorative fiction. As a result, little of substance or accuracy is known about the Roma. Elsewhere in the world (e.g., Eastern Europe), there are recognized Romani communities that are the subject of significant discrimination and in some cases (e.g., post-war Kosovo), significant repression.
There is a strong unwavering social and culture bond forged among the Roma to sustain their way of life. Traditionally they turn inward and reject the outside world to become a self-perpetuating system that renews itself with each new generation (Bodner,1992). Loyalty to the family is maintained at all cost. Education and technology are not significant factors within the culture and are not traditionally considered important; though there are indications that this is changing. Many older Roma are not literate. In recent years, some younger members of the familia have been allowed to attended Gadje schools until about the age of ten and are thus able to read important Gadje documents. There now are increasing numbers of college-educated Roma - at least in countries like Canada and the U.S.
History of Immigration
The Roma originated in India and migrated to Europe around 1000 A.D. It is unclear why they left India, and there are no explanatory written documents. They reached the Balkans by the 14th Century and spread throughout Western Europe by the 15th Century. The Roma were the first people of color to immigrate in large numbers to Europe, and Europeans tended to treat them as outsiders. In the 18th century, groups of Roma were deported to the American colonies.
Because of their alternative lifestyle and refusal to conform the Roma were also persecuted in the American colonies and were exiled from several places. Their occupations included "magic," fortune-telling, copper-smithing, tinkering, mechanics, horse dealing, and music.
Another large group of Romani people migrated to the United States in the late 19th and early 20th Centuries. They came from Argentina around 1920, after previously residing in Russia. Current Romani population estimates in the United States are difficult to determine as the census does not record their cultural identity, and the Romani population does not record births or deaths. The national population of Romani Americans is estimated to be one million with the largest concentrations of Romani people in urban areas such as Log Angeles, New York, Chicago, Boston, Atlanta, Houston, Seattle, Portland, San Francisco and Fort Worth. In Europe, large Romani ghettos exist at the outskirts of many urban areas, especially in Eastern Europe. The largest number are in Romania, followed by Hungary, Bulgaria, Slovakia, and Yugoslavia/Serbia (Patrin Journal, 1999). There are an estimated 12,000,000 Romani worldwide (Smith, 2000).
Throughout their history in the West, the Roma have experienced discrimination because of gadje folklore, Romani practices, and the prejudice inherent in all societies. Even the Bible has been used to justify discrimination against the Roma:
There is also the legend (still alive in rural Balkan countries) that the Roma made the nails that were used to crucify Christ and/or that they stole the fourth nail, thus making the crucifixion more painful. Gypsy hunting and other such persecutions have occurred almost from the beginning of the Roma presence in Europe, and continue to this day. Nazi Germany institutionalized the hatred and killing, with Gypsies treated the same as Jews in all respects. Approximately 500,000 - 1,500,000 Roma were murdered in the Holocaust ("the devouring" to Roma). Persecution and discrimination is now carried out by governments, communities, and individuals - especially in Eastern Europe and increasingly so since the fall of communism (Berlanger, 2000). The growth of xenophobic nationalism and the skinhead movement are current and significant forces in repression of the Roma.
Recent Romani refugees and immigrants to the U.S. have come primarily from Eastern Europe, e.g., Romania, Bosnia, Bulgaria, and Kosovo. They tend to have less education, more health problems, and greater difficulty with resettlement than other Eastern European refugees and immigrants. It is not known to what extent recent Romani arrivals have assimilated into indigenous Romani culture in the U.S. or other countries of second asylum.
The language of the Roma is called Romani and is derived primarily from Sanskrit; with strong influences from Persian, Greek, and Slavic languages (note that these track the Roma diaspora). Until recent years, Romani was solely a spoken language, but there is increasing use of written forms of Romani. There are different forms of Romani depending on which clan the Rom belongs to. Interaction between different clans is limited, and the form of Romani spoken is an important means of distinguishing between clans.
There also are customs in communicating with Gadje. In the healthcare setting, only the elder males are likely to communicate with healthcare personnel. Women are not permitted to interrupt men nor to be alone with a man who is not her husband or relative.
Social Structure and Kinship
There is an extensive and complicated social structure among the Romani people. Generally, there are four loyalties and/or identities (nation, clan, family, and vista). First, Roma are divided into Natsias or nations, which is their main identity group. The four common Romani nations are the Machwaya, Kalderasha, Churara and Lowara. The nations are then divided into Kumpania or clans. A clan is "an alliance of families united by ancestral, professional, or historical ties" (Thernstrom, 1980, p 442). This loyalty or group consists of extended family that travel and reside together and maintains economic control over a particular territory. The clans that are most numerous in the United States are the Romnichals, Bayash and Rom. Each clan has a leader and the social structure of the clans may differ. There are, incidentally, no "Gypsy Kings."
Some clans are further subdivided into tribes, but many clans are simply composed of familia. The one common thread in all clans is the importance of the familia, the most important social group to the Roma. A vista is an extended familia, which includes anywhere from 20 to 200 members who are all related by blood or marriage. The familia has a social structure of its own that is very similar within all clans. Families are male dominated, with a group of male elders within the familia being the major decision makers. Romani women are often not included in the decision making process and generally have a much more subordinate role within the familia.
The Roma are ethnocentric, tending to demonstrate a sense of moral superiority and contempt toward the Gadje. The Roma have a strict taboo code that classifies all outsiders as soiled or unclean. This code prevents interaction with the Gadje and further limits acculturation. Some refuse to use the Gadje language to record births, participate in census or other surveys, or to record deaths. They maintain enough of a link with the outside world to meet their primary economic and cultural needs. Very few are employed by Gadje except as contractors and then nearly always on a temporary basis.
Important Romani concepts related to health care are "wuzho" and "marimé". Wuzho is the Roma word for pure while marime is a broad term referring both to a state of pollution or impurity or a sentence of expulsion imposed for violation of a ritual or moral nature. Other terms for marimé are moxadó, melali, mageradó, mokadi, kulaló, limaló, prastló, palecidó, pekelimé, gonimé or bolimé.
The Romani culture has strict rules about anything considered polluted. A person can be found to be marime for violations of sexual conduct, not following Romani rules for food preparation, clothes, washing or cleaning, or other activities involving pollution. Women are particularly associated with marimé, with any part of a woman's body above the waist being wuzho or pure and below the woman's waist being marimé or polluted - especially the genitoanal area and its secretions. Secretions from the upper half of the body are not polluting or shameful. Washing hands after touching the lower body before touching the upper body is required. Separate soap and towels are used on the upper and lower parts of the body and they must not be allowed to mix. To the Roma, failure to keep the two sections separate in everyday living may result in serious illness. For this reason, most Romani women will not agree to a gynecologic examination unless the procedure is clearly explained as being essential to her well being. Certain food or animals (birds and cats) may also be considered marimé.
When a young women reaches menarche, she is introduced to shame and must begin observing the washing, dressing, cooking, eating and behavioral rules of adult women for her own protection as well as the protection of others. Her clothes must be washed separately from those of men and children because of the impurities of her body. She cannot cook food for others during menstruation. She must show respect to men by not passing in front of them, stepping over their clothes, or allowing her skirts to touch them. Pre-pubescent girls and older women are placed in a different category because they do not menstruate. This allows them freedom, and they are allowed to socially interact with fewer restrictions.
The Roma are supposed to wash only with running water, with a shower acceptable but a bath looked upon as sitting or lying in dirty, stagnant water. Dishes cannot be rinsed in the same sink or basin that is used for washing clothing. The kitchen sink is used only for washing dishes and cannot be used to wash oneís hands.
Because they do not observe body separation, Gadje are seen as a source of impurity and disease. The impure public places where Gadje are congregate are also considered potential sources of disease. These places are considered less clean than the Romani home or open outdoors. The Roma generally avoid touching as many impure surfaces as possible. They will attempt to lessen the pollution by using disposable paper cups, plates and towels.
Gypsies tend to marry young. Some tribes practice arranged marriages while others allow courtship. If the marriage is arranged, the groomís father selects and pays for a bori or daughter-in-law through the help of a marriage arranger. Marriage is not always for love but may be arranged or undertaken according to practical, economic, and/or social considerations of the family or clan. Marriage in the Romani culture has occurred as early as age nine but usually does not take place before the age fourteen. Outside marriage is considered a serious transgression in some clans and may be grounds for expulsion. In other clans, if a Romani male marries a female Gadje his community may eventually accept her provided she adopts the Romani way of life.
Marriage festivities last three days after which time the bride and groom are allowed to consummate the marriage. The newlyweds traditionally live with the groomís parents until they have several children of their own, and the family is satisfied with their adult behavior and skills, at which time they are allowed to establish a semi-independent nuclear household. The daughter-in-law must prove herself to her new family and is expected to perform services with little in return. She is expected to care for her in-laws and produce grandchildren. With the birth of her first child the daughter-in-law moves from the child or bori status to mother-of-the-child status.
There is not a separate Romani religion. Since they are generally a nomadic people, they have traditionally adopted the dominant religion of the country in which they live. For example, the Roma and Boyash clans are largely Roman Catholic while the Romnichals are largely Protestant. There are also Eastern Orthodox, Hindu and Muslim believers among the Roma. Many of the cultural practices of the Roma can be traced to other religious beliefs. For example, Roma practices of ritualistic cleansing can be traced back to ancient Hindu customs. If Roman Catholic, they will also celebrate the days of the Saints believed to have helped the familia. Evangelical activities among the Roma have increased in recent years.
Although the Roma adopt the religious practices of those around them, they also maintain several strong faith practices and beliefs in the supernatural, omens and curses. They believe in charms, amulets and talismans which they will carry in their pockets for safety, good luck and to prevent illness. They also have female healers, called drabarni or drabenhgi, who prescribe traditional healing rituals and cures. One traditional means of healing is to carry a moleís foot as a cure for rheumatism or a hedgehogís foot to prevent toothaches. Interestingly, the Roma do not believe in fortune telling. This practice is used only to earn money from the Gadje.
Roma who enjoy good health are believed to be blessed with good fortune, and those who are ill are said to have lost their good luck. Roma believe that actions (e.g., clean or polluting) can promote health or result in illness. To return to a state of purity, cure, and good health one must conform or correct the marimé social behavior.
The Romani people tend to use the Gadje health care system only in crisis situations when there is an acute and/or unresolved condition for which folk medicine has failed (except as noted under "Pregnancy . . . " below. Generally, they see the mainstream healthcare system as causing more harm than good. Romani may request specific "famous name" physicians and demand specific treatment even if the treatment or physician is inappropriate. There also is preference for older physicians over younger ones. Sharing medications is common and Roma have also been known to request a specific color of medication for a specific illness.
For the Roma, illness is not just the concern of the individual but a problem shared by the entire clan. When a clan member must enter a hospital, family members are expected to remain with that person day and night to watch over, protect, and perform caring and curing rituals. This cultural coming together is one of the strongest values of the Romani culture. Cultural care and accommodation of this group kin presence is a major factor to be considered in planning and providing care for a Rom. Roma are especially fearful of any surgical procedure that requires general anesthesia because of a belief that a person under general anesthesia undergoes a "little death". For the family to gather around the person coming out of the anesthesia is especially important.
Health Risks Among the Roma
In parts of Europe, most Roma have a life expectancy of under 50 (Reyniers, 2000). Poverty, isolation, predjudice, and other factors discussed above and below contribute to this appallingly short life span.
The Romani culture in itself can sometimes increase risk for certain illnesses. For example, the belief in purification rituals and ritualistic cleansing to prevent illness translates to resistance to childhood and adult immunizations. Social isolation can be carried to such extremes (refusal to register births and deaths) that significant trends in morbidity and mortality may be hidden. Isolation also results in lower participation in health screening, and beliefs about marimé mean that cervical and colon cancer screening are especially difficult to promote.
Dietary habits include high fat and salt content in foods. A large percentage of Roma smoke and are obese. These practices put the Roma at increased risk for hypertension, diabetes, occlusive vascular disease, strokes and myocardial infarctions (occurring in Rom as young as 20 years). Again, social isolation and resistance to screening result increased health risk such as end-organ damage from undiagnosed hypertension or diabetes, especially among women who are even less likely than men to be screened.
Social (or societal) isolation also leads to an increase in consanguineous marriages, and thus an increased risk for birth defects. Crowded living conditions lead to an increase incidence of gastrointestinal infections, respiratory infections and hepatitis. Romani infants are more likely to be born prematurely and low birth weight due to a lack of prenatal care. In some clans, the infant mortality rate and abortion rates are high. Romani babies also have an increased risk for the development of phenylketonuria. Please see section on screening and risks at the end of the document.
Pregnancy, Childbirth and Child-rearing
A woman is considered to be marimé (polluted or unclean) during her menses, pregnancy and for six week after the birth of the child. Childbirth should not occur at the familia's usual home lest the home lose its purity. For this reason, there is increased acceptance of hospital births.
A new baby is immediately swaddled tightly and should only be handled by his/her mother to maintain a state of wuzho. When a baby is delivered in a hospital, the mother should be allowed to practice ritualistic cleansing and the father not pushed to visit during this marimé time. There are rituals (that vary with tribe) involving the formal recognition of the infant by its father. In some cases, the child is wrapped in swaddling on which a few drops of paternal blood are placed. Other rituals involve the child being covered by a piece of clothing that belongs to the father. In some tribes, the mother puts the infant on the ground and the father picks up the infant and places a red string around its neck, thereby acknowledging that the child is his (Patrin Journal, 1999). The Patrin Journal has more extensive information on this and other aspects of birthing.
In the first weeks postpartum at night, no member of the family is allowed to go in and out of the mothers room, and all the windows and doors are kept shut lest the spirit of death called "the night" enter and harm the baby. If a baby dies, it is bad fortune and the parents must avoid the babyís body. Traditionally, the body is buried in a secret place by the grandparents. Another way to avoid bad luck after the death of a baby is to leave the funeral and burial to hospital authorities. Note that bad luck here is far more than bad luck finding a parking space or in game of chance! Bad luck in the life of the Roma is life-altering for individuals, families, and clans.
Children are a major focus of Romani culture and are believed to bring good luck. Child rearing is the responsibility of everyone in the family. Due to the large and complex social structure, most of the children are raised and cared for my many different people including extended family members and clan members living in the same residential area. Infant care tends to be both permissive and protective. Infants and young children enjoy freedom from most social restraints and are not expected to understand or demonstrate shame. It is not until puberty that they are introduced to the concept of shame and expected to observe marime. Children are not expected to take many of the precautions that adults do to ensure cleanliness in their daily lives, and in contradistinction to adults, may eat food prepared by Gadje. They are weaned and toilet trained in a very gradual fashion as these are not considered important events in the Romani culture.
In Romani culture older children act as miniature adults. Teenagers do not experience a carefree adolescent period as with many Western cultures. They are expected to begin adult socialization and to start a profession by ten years of age. Separation is by gender to learn the skills of the adult. Children are expected to respond with respect to multiple parent figures.
Dying and Death
Romani belief in the supernatural and fears about death play a significant role in their rites and customs related to dying and death. When a Rom is about to die, there is an extensive ritualistic process that must initiated. Through an elaborate communications system, relatives from other geographic areas come to be with the dying or dead. If the person is dying, it is essential that relatives be allowed to be present at the moment of death. When the person is near death, a special candle is brought into the room. At the time of death this candle is lit and a window opened. It is believed that the candle will light the way to heaven for the deceased personís soul. The body is rubbed with holy oil, and family displays intense grief. For three days, all Roma must grieve by remaining in the presence of the dead. During this time they do not bathe, shave, wear jewelry, change clothes or prepare food. They are allowed to drink coffee, brandy or other liquors. Mirrors may be covered and vessels containing water may be emptied.
|Note from John McIntyre in Rochester: We had a patient on our open heart unit and the family self described themselves as Gypsies. We had a couple of rough weeks as the family refused to agree to our visiting policy, a very liberal policy (24/7 except during bedside report at 7A and 7P or when another patient was undergoing a procedure or a code. Our unit is 30 years old and all of the patients are in an open pod). Now, in retrospect we are aware of the fact that family is all important and can be rather large (it was). One thing I cannot find in the literature was that they said that when the elder man was near death, there needed to be a male at his side and in physical contact with him so that his “aura” could pass on to the next male. Once they explained their beliefs, we conceded that they could stay closer to him and instead of having to go to the waiting room they could wait in the hall “in case they needed to get to him quickly”. Once it was clear that nothing more could be done, we did allow the elder males to be present and when he died one male family member was with him and held his hand. After his death the unit was a cacophony of wailing and crying. Unfortunately I did not get a chance to ask for further explanation of the death ritual.|
It is culturally acceptable for relatives to be deeply absorbed in their grief. Displays of grief may include moaning and shouting out to the deceased, scratching their faces, pulling their hair out and throwing themselves to the floor or into a wall. There is great fear among the survivors that the dead might return in a supernatural form to haunt the living. For this reason the name of the deceased should not be mentioned, the body is not touched and all objects belonging to them destroyed. After a three day wake, the funeral is held, which is followed by a death feast in honor of the deceased. For this feast, food is always prepared in units of three (three chickens, three pots of potatoes, etc.). Additional feasts are held to mark the three days, nine days, six weeks and one year intervals after the death. Close relatives of the deceased wear mourning clothes for a full year. It is believed that after one year the deceased soul enters heaven.
Health Risks in Roma and Other Refugees from Eastern Europe or Russia (Ackerman, 1997) Also see Infectious Diseases site.
Recommended Laboratory and Other Tests for Refugees from Eastern Europe or Russia
Other Recommended Tests for the Roma
Authors: K. Ryczak, L. Zebreski, M. May, S. Traver, and C. Kemp
References and Resources
The Patrin Web Journal: Romani Culture and History. This is a "The Resource" on the Romani. Extensive information and excellent quality. I don't think you will need more than this: http://www.geocities.com/Paris/5121/index.html
Ackerman, L. J. (1997). Health problems of refugees. Journal of the American Board for Family Practice. 10:337-48.
Bodner, A. & Leininger, M. (1992). Transcultural nursing care values, beliefs, and practices of American (USA) gypsies. Journal of Transcultural Nursing. 4(1), 17-28.
Erlanger, S. (April 2, 2000). Across a new Europe, a people deemed unfit for tolerance. New York Times. B1, 16.
Fraser, A. (1992). The Gypsies. Cambridge: Blackwell.
Hancock, I.F. (1980). Gypsies. In S. Thernstrom (Ed.), Harvard Encyclopedia of American Ethnic Groups (pp. 440-445). Cambridge: Harvard University Press.
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Stanhope, M. & Lancaster, J. (1996). Community Health Nursing (4th ed.). St. Louis: Mosby.
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Webb, G. (1960). Gypsies: The secret people. Westport: Greenwood Press Publishers.
Wetzel, R., Dean, M., & Rogers, M. (1983). Gypsies and acute medical intervention. Pediatrics, 72(5). 731-735.