By Nigel Hullah
Being born into a Roma Gypsy community imprinted on me some of the traditions and values I still live to and are part of me even today. As with all communities Dementia is known but the response is unique as it is with all the diverse communities that make up our vibrant diverse Four Nations.
Romani people have been in Britain since at least 1515 after migrating from continental Europe during the Roma migration from India. The term Gypsy comes from “Egyptian” which is what the settled population perceived them to be because of their dark complexion. Examination of the Romani language proves that Romany Gypsies, originally came from Northern India, around the 12th century. French Manush Gypsies the clan I was born into have a similar origin and culture to Romany Gypsies.
For centuries, stereotypes and prejudices have had a negative impact on the understanding of Roma culture. The Roma do not follow a single faith; rather, they often adopt the predominant religion of the country where they are living and describe themselves as “many stars scattered in the sight of God”
The Roma live by a complex set of rules that govern things such as cleanliness, purity, respect, honour, and justice. These rules are referred to as what is “Romano.
Romano means to behave with dignity and respect as a Roma person. “Rromanipé” is what the Roma refer to as their worldview.
Traditionally, anywhere from ten to several hundred extended families form bands, or kumpanias, which travel together in caravans. Smaller alliances, called vistas are more common, the open style of living and the extended responsibility gave me a wonderful free childhood safe and nurturing.
Each band is led by a voivode, who is elected for life. This person is their chieftain. A senior woman in the band, called a phuri dai, looks after the welfare of the group’s women and children.
In some groups, the elders resolve conflicts and administer punishment, which is based upon the concept of honour. Punishment can mean a loss of reputation and at worst expulsion from the community.
Often in the Romani communities, they would say they would not seek medical help for relatives showing signs of dementia because “the symptoms don’t seem that dangerous”
Many would be hesitant because they “don’t understand our culture and anyway we look after our own and “they might take them away and lock them up “.
All elders in the Roma community are held in respect and revered for the accumulation of life skills and lore, and for the many of the clan they themselves have cared and nurtured for.
There is a real fear that health, or other professionals, may not understand the community. This lack of understanding would lead to no consideration of their preferences and interests in their care, mostly being brought about by a lack of understanding of our culture. These fears are backed up often by discrimination or lack of understanding.
Its so important to understand the cultural differences to make services of value and to all communities.