Gypsy Roma Healthcare in the United States Today a Culture Sensitivity Issue

Gypsies, otherwise known as Roma, came to the Americas with the very earliest settlers. Throughout the course of the past 500 years, the Roma, their preferred name, have held on to their traditions and practices. Historical written record says that the Portugese exported Gypsies to South America. According to legend, the Portugese did the same thing in what is now South Carolina, long before the English came to settle the area.

The long tradition of Gypsies in the United States is almost as interesting as the origination of Gypsises as a people. Gypsies originated in India over 1000 years ago, migrating to Europe in the Middle Ages. No one knows for sure how or why they began to wander the globe as they have. Today, there are more than twelve million Roma located in many countries around the world. Because the Romani are almost never included on official census counts, there is no way to confirm that number.

Many Roma around the world do not admit to outsiders their true ethnic and cultural origins, mostly for economic and social reasons. Howvewr, even though they may not admit it, the Roma are a distinct ethnic minority, distinguished by language, Romani or Romanes and blood from other types of people. Despite the ill treatment and injustice they have been subjected too, the Roma have thrived for centuries.

There have been several diaspora in the history of the Romani. The first migration, was, of course, the initial dispersal from India about 1000 years ago. Some scholarshave suggested that there might have been several dispersions from India around the same time. The second great migration, known as the Aresajipe, was from southwest Asia into Europe in the 14th Century. The third migration was from Europe to Americas in the 19th and 20th centuries after the abolition of the enslavement of the Romani in Europe theat took place between 1856 and 1864. Some scholars suggest that there is yet another graet movement of gypsies today, beginning with the fall of the Communism in Eastern Europe.

Like biological species, the Romani culture is very dependent upon the area in which a specicifi9c group of roma live. There are many tribes, and like biological creatures, they adapt culturally to their surroundings. There is no definition of Romani culture, no classification scheme for these people. They are a people that defy classification. There are, however, several attributes common to all Roma tribes. The first of these is loyalty to the family, whether it be extended or clan; a belief in Del (god) and Beng (devil). Roma believe in predestiny, Romaniya, the standards and snorms of the people, which change in degree form tribe to tribe, and adaptability to changing conditions.

The integration of many Roma into Gajikane (non-Roma, or foreign) culture has diluted many Romani cultural values and beliefs. Not all tribes have the same definition of what "Roma" is. What one group may accept as being true Roma, may be gadje to another tribe. Romani culture is diverse, with many traditions and customs. Tribes all around the world have their own individual beliefs and rules. It would be an invalid generalization and a severe oversimplification to paint all Roma with the same brush.

Over the past 1000 years, there have been many large-scale, state sponsored persecutions against the Roma in all the lands they have traveled in. Perhaps the most well-known is the Nazi ethnic cleansing. The Third Reich is responsible for the deaths of up to 1.5 million Roma. The collapse of communism in Eastern Europe over the past 15 years has re-kindled anti-Roma sentiment in eastern and western Europe. Violent attacks against Romani immigrants and refugees have been permitted to occur with little or no restraint from government authorities. After many years in Europe, The Romani people remain the least integrated and the most persecuted people of Europe. Almost everywhere, the fundamental civil rights of the Roma are threatened. Racist violence targeting Roma has been rising since the fall of the Iron Curtain. Roma face discrimination in every aspect of life, employment, education, health care, administrative services like welfare, and other services that many people take for granted. Hate speech against roma is somehow socially acceptable in many ocieties, which perpetuates the cycle of racism even further into the future.

Anti-Roma attitudes also exist in the Americas, to some extent. Roma are stereotyped and misrepresented in news, books, films, television. Some areas even have special "Gypsie" units in police forces to deal with and warn the population of 'Gypsy" activities.

There is some cause for Roma all over the world to be hopeful. In the past several years, the issue of the Roma has been addressed by several non-governamental organizations, national and international. Economic, social, political, and cultural approaches have been applied in the hopes of raising the living standards, promoting a more just social policy, encuraging Roma political participation, and strengthening Roma cultutral identity. Solutions to the many problems faced by Roma are being sought in the context of the struggle against racism and nationalism as well as in the context of enhancing cultural pluralism.

Gypsies are a largely unknown ethnic population in the United States. As stated earlier, most countries do not keep accurate census data on their Roma populations. However, most estimates suggest that there are between one-quarter million and a half-million Roma living in various regions of the United States.

All told, Romani in the United States are not a healthy group. They have high rates of heart disease, diabetes mellitus, as well as hypertension. On the rare occasion that an American Roma will seek professional modern medical care, the hospital staff will find the behavior of a Roma troubling and confusing. The Roma will often times be labeled as troublemakers. Not that all this trouble is the fault of the hospital or clinic staff. Roma are often suspicious of non-Roma people, places, and institutions, believing them to be unclean. For the Roma, ideas about the cuses of health and illness are closely tied to the ideas about good and bad fortune, purity and impurity, and inclusion and exclusion form the group. The basic principles affect everyday life for the Romani, including such basics as eating, bathing, doctors, hospitals, illness, medicines, birth and death.

There are many cultural barriers that can prevent a Romani from going to a hospital for medical treatment. Much of this trepidition ensues from cultural differences in the orgiginds of illness, what is considered clean and unclean, and what is permissible and what is not permissible in regards to maintaining personal purity.

Some of the problems facing the medical community in regards to delivering health care to this group of people is often the confusion that ensues over the medical treatment that Roma can demand. For example, a Romani person may ask for a famous doctor and demand a specific treatment, even though the treatment and the doctor may be totally inappropriate to what they actually need. A Roma may also ask for a specific color of pill that they will share with relatives who need the same colored pill. They will refuse treatment by an oung doctor or nurse, preferring older, more mature doctors and nurses to care for them.

It can be extrodianrily difficult to get a roma to follow prventative and long-term treatment. When a relative is sick, large groups of family members will show up, camping out on the hospital grounds, disregarding visitation hours and rules, and creating general chaos in the hallways of the hospital. Hospital personnel often do not know how to deal with the Romani.

As difficult as this situation may seem to a health care professional, Roma can be good patients. They respect authority, within their own families; they have an unusually large network of friends and family for support. They are eager to learn about the best treatment for themselves and their families. Doctors, nurses, and other health care professionals can use all these factors to their advantage in assisting and providing health care to Roma, all the while reducing the general disruption and chaos that can result from an ill Roma.

In the United States, Romani usually live in urban areas, on the main streets, in the poorer areas of the city. Romani can usually not be identified as such by a person walking down the street. The men wear American clothes. The women however, particularly older women, wear long colorful skirts and low-cut sleeveless blouses. As mentioned earlier, Roma, for social and economic reasons, often prefer to pass themselves off as another ethnic group. They may claim to be American Indian, Mexican, or Romanian. Sadly, they are accustomed to the discrimination they face all over the world. People often stereotype them either romantically as free spirits or as thieves. Like most stereotypes, neither of these are necessarily true. Although they do not publicly admit their ethnicity, if a doctor, nurse, o other medical professional intimates that it would help them to care for the patient if the hospital knew the patient were a Roma, then most Romani will freely admit to it.

The 'average" Roma household usually has a somewhat flexible membership. This is due to the fact that Roma generally have large extended families. The tradition of living together dates back to the days when members of a family would all share one camp, eating and sleeping at family members homes as if they were there own. The males work in groups of relatives and friends. They are handymen, the solicit repair jobs for cars, buying and selling cars, or helping women in their fortune telling business. The females share a storefront office or room where they tell fortunes. Roma prefer to keep to them and avoid contact with other members of society.

One of the most important things that a health care professional needs to understand when working with Roma is this. For the Roma, illness is not an individual problem. The sick person is not the only one suffering; the ill person is not the sole concern. For the Roma, illness is social, a problem of broader importance than just the individual. News of a serious illness within the family will hasten everyone in the family to the bedside of the ill patient. This gathering is not just a socially mandated gathering, it also stems from a genuine concern for both the sick person and the immediate family of the ill person. As stated earlier, the care for extended family and clan members, as shown through the coming together when someone is ill, is one of the strongest values in Romani culture, one the pervades all tribes no matter their location.

In order to properly care for the Romani, a health care professional must have a basic understanding of the basic beliefs and behaviors of the Romani as it relates to sickness and health as well as the social and cultural context of healthcare. As mentioned earlier, for the Roma, the understanding of health and sickness is closely tied to the cultural understanding of purity, and impurity, good luck and bad luck, cleanliness and uncleanliness (see table 1).

Good fortune and good health are closely associated for the Romani. Their common blessing, "may God give you luck and health," demonstrates that connection clearly. Those who have good health have also been blessed with good fortune. Those who are sick have somehow lost their good luck. This is one of the reasons people gather when even an extended family member is ill. To some extent, the ill person, the one who has lost his/her good fortune, can in turn, ruin everyone's luck. By their own actions they encourage health or cause their own illness. Sickness is caused when a person performs actions that can be considered polluting or contaminating.

The way to become well again is to return to a state of purity. This is accomplished by and conforming to acceptable social behavior. For example, a teenager who is rebellious is in danger of polluting him/herself through sexual relations can be "cured" by marriage.

Perhaps the most frustrating belief health care professionals encounter is that the larger, or fatter, a person is, the luckier, healthier, and happier that person will be. Fat people are though of as healthy and fortunate. Conversely, a thin person is pitied as either ill or too poor to eat, both of which indicate a lack of good luck. Family wealth and fortune is also partly due to luck, according to Romani tradition, because although each family develops similar job and economic skills, some have more luck than others. Some families enjoy good health, grow to a large size, and prosper, whereas others are plagued with illness, family and money problems. People then must take action to change their own fate and fortune. Personal cleanliness, proper social attitudes, and behaviors including generosity and virtue, bring good luck. Generally speaking, traveling as opposed to living in one place is thought by the Romani to be good luck.

Marime, in the Romani language, means polluted, defiled, or unclean. The word is used to indicate uncleanliness or impurity of a physical as well as a ritual or moral nature. Being marime or unclean can bring about bad luck and poor health. In order to be "clean" the top half of the body from the waist up must be kept separate from the bottom half of the body, which is considered, polluted and is an area associated with feelings of shame. The source of pollution of the lower body is the genital/anal area and its emissions and secretions. Secretions and emissions that come from the top half of the body are not considered shameful, indeed they are seen as clean and can be used as cures.. For example, spit is though of as a clean and curative substance that may be used to clean cuts or scratches. This viewpoint conflicts with medical practice, which sees spit as a possible source of contagion. Separate soap and towels are used on either the upper or the lower part of the body, and these towels must not be allowed to mix. Bathing in a hospital can be easily accommodated to Romani's belief by making sure they have separate soap and towels for the upper and lower portions of the body. Romani believe that not keeping these two areas separate everyday can result in serious illness. Many guidelines are used to keep the upper half of the body separate from the lower half and therefore pure.

At the very least, it is important to wash hands after touching the lower part of the body and before touching the upper part of the body. It is important for health care professionals to respect this rule too, making sure to change examining gloves when going from an examination of the lower part of the body to the upper part of the body. Furthermore, most Romani women will not agree to a gynecological examination or a Papanicolaou smear off hand. However, if the attending health care professional will take the time to explain the importance of such an examination, a Romani will usually agree.

Marime can also mean rejection because to become physically or morally impure could mean being rejected by the entire group. Rejection is a serious punishment for a Gypsy because it means social isolation.

This is another reason for the coming together of the family, to assure the ill and the immediate family members of the ill person, that they are not being rejected.

The idea of body separation has other implications for the treatment of Roma at hospitals. For the Roma, the most important distinction is that between Roma and non-Roma. Non-Roma do not observe body separation and are therefore a source of impurity, disease, and bad luck. Public places where non-Roma predominate such as public toilets, hospitals, buses, schools, offices, jails, and non-Roma homes are also potential sources of disease. All these places are less "clean" than the home of a Gypsy or open outdoor spaces such as parks and woods. When they must be in non-Roma places, Romani generally avoid touching as many impure surfaces as possible, but, of course, prolonged occupation of a non-Roma place such as a hospital means certain impurity. In this case the person tries to lessen the pollution risk by using disposable paper cups, plates, and towels -- that is, things not used by non-Roma.

This also has implications in terms of controlling the many people that appear when a Romani is admitted to a hospital. It is better to be on the grounds than in a hotel, or hospital.

In all this it is important to remember that it is not the case that Romani do not care for their health or fitness, indeed it is scene that they care very much for their own personal health and the health and luck of their family, from the oldest to the youngest, even though these practices do not seem to meet with popular medical convention of what is healthy.

Concern for a person's health begins at birth and is most active during the days or weeks of confinement (from 9 days to 6 weeks) of the mother. In the past, infant mortality for Roma has been very high. This may be somewhat improved nowadays because more Roma women re deciding to give birth in hospitals; however, the crucial period of prenatal care is still entirely neglected because few women will accept a vaginal examination. One of the reasons Roma have turned to hospital birth is the advantage to them of avoiding the impure placenta birth substances.

After the period of pollution of birth has passed (more or less 6 weeks), children are considered pure in body and action. Children are free from most social restraints and are not expected to understand or demonstrate "shame" in their actions. Physical contacts defiling to adults are not necessarily defiling to children, who need not take many of the precautions that adults do to ensure cleanliness in their daily lives. Children, for example, may eat food handled and prepared by Roma that young adults would not eat.

It is important for a medical professional, in dealing with a sick Roma and his/her family, to try to talk to a family elder. Elders are venerated and respected persons. They are considered to be politically powerful within their tribe and many of the regulation that restrains younger people are relaxed for elders. Elders enjoy the clean status that children enjoy before puberty. Often times, an elder holds considerable influence over the younger generation. For a medical professional, having an elder to exert influence over a younger person may mean that the person in question will get medical care that they would have rejected if they had not been told to consent to the procedure by an elder.

Yet another area that is important for a health care professional to recognize is the nutrition requirement that Romani demand. Romani try to eat food that they know to be pure and clean. Consequently, there are many regulations in regards to the handling and preparing of food. Although there are no foods that are always prohibited, some adult Romani always fast on Fridays. Some foods, including salt, pepper, vinegar, garlic, and onions, are considered lucky. Eating these foods encourages good health. It therefore, will be almost impossible to get a hypertensive person to give up salt. The recommendation will be counter-intuitive to them.

Romani also like to eat with other people. Sharing food is a symbol of respect, friendship, and an acknowledgement of their cleanliness. Refusing to share food with another is an offensive action, implying the person is unclean. One of the most serious punishments Romani as a group can inflict on a person is refusing to eat with them. It is the equivalent of social death.

Food must be carefully prepared to avoid any uncleanliness. Separate soap is reserved for food related items and the prepares food must be washed with that soap before any food is handled. Food prepared by people who are not Romani is avoided. This can cause serious problems in a hospital setting, where none of the food is cooked by the Romani. It is important for the health care professional to realize this very important aspect of Roma life and to try to make allowances for it, by allowing relatives to bring in food, even if it is cooked according to doctor's recommendations. It is also important that even utensils be washed and brought by family or friends, because a Romani may eat with their hands instead of eating with utensils that may not be properly washed.