LIFE OF PEOPLE WITH DISABILITIES IN THE ROMA AND EGYPTIAN COMMUNITY: PAIN THAT OTHERS DON’T SEE

ALTHOUGH IT IS NOT OFFICIALLY RECORDED HOW MANY PEOPLE WITH DISABILITIES LIVE IN THE ROMA AND EGYPTIAN COMMUNITIES, SOME DATA INDICATE THAT THE FIGURES ARE WORRYING AND THE POSITION OF THESE PEOPLE IS VERY DIFFICULT

Andrea JELIĆ

Eight-year-old twin brothers lie on an old mattress in a dilapidated house in the Podgorica neighborhood of Vrela Ribnička while swarms of flies fly around them. They don't speak, move, or smile. They cannot complain of pain. Cerebral palsy, from which they both suffer, was not treated in time. Their lives are now seriously threatened.

They do not receive help from the state because they are stateless - they do not have citizenship or personal documents, even though they were born in Montenegro. Their father, Bidaim came from Kosovo 24 years ago. Most stateless persons in Montenegro are members of the Roma and Egyptian communities. They suffer multiple discrimination and cannot access health and social insurance, the right to disability benefits, or employment...

Bidaim failed to get documents in Montenegro because he was not registered in Kosovo and came without papers. "When I was born, my father didn't register me. He had an alcohol problem and didn't care about me. It marked my family and me for the rest of my life because statelessness is hereditary. I don't know how to get the documents and help my children," he says for the Center for Investigative Journalism of Montenegro (CIN-CG).

A few minutes older brother is making slower progress. He eats only mushy food and is in great pain. He doesn't even communicate with his eyes in a stuffy room. Bidaim's second wife, Danijela, cares for them day and night. The biological mother abandoned the twins soon after birth.

Danijela and Bidaim have another son, only a few months old, and they are expecting a new baby. They need more than 30 euros per week to replace breast milk. They have no money for medicine and therapy for the twins.

"Once, the younger twin was very sick and urinating blood. We went to the hospital immediately, and I spent 12 days there with him. After that, I was neither alive nor dead. Sometimes we get medicines from some private pharmacies from the good people who work there, but they mostly turn us down because we don't have prescriptions," Danijela says.

They once received a referral from the doctor for the older twin to the Institute Dr. Simo Milošević in Igalo. They were happy about the opportunity and headed from Podgorica to the Institute. But they were sent back home because the child did not have a health card. "Then how did we get the referral in the first place? Problems with documentation are the main reason my children cannot receive treatment," Bidaim says.

If treatment starts in time, people with cerebral palsy, a neurological disorder that affects body movement and balance, can significantly improve their quality of life.

It is not officially recorded how many people from the Roma and Egyptian community have disabilities in Montenegro. However, some data indicate that these numbers are worrying and that the situation of these people in communities that otherwise have many problems is even more complicated. It is the most difficult for those who do not have documents because they have no rights and cannot receive free treatment.

People with disabilities (PWD) in these communities are in an even bigger problem, Jovana Knežević, a project assistant at the Center for Roma Initiatives (CRI), told CIN-CG. "PWDs are at multiple risks, even becoming stateless due to lack of information, inability to visit institutions etc."

A quarter of households have at least one person with a severe health condition or a disability

In the "Analysis of the needs for establishing services for Roma and Egyptian children in Montenegro 2020 ", it is pointed out that a quarter of households have at least one person who suffers from a severe health condition or disability. Even 40 percent of them are in poor or lousy health. It is added that 40 percent of community members do not have health care.

The analysis also points to the problem of the need for more data. The Ministry of Labor and Social Welfare does not keep records of beneficiaries of material benefits according to nationality and ethnicity. They explained for CIN-CG it was because the legal provisions regarding the prohibition of discrimination. "In the Information System of Social Welfare, there is no provision for records of beneficiaries based on nationality and ethnicity," the Ministry stated.

"If it is taken into account that people from Roma and Egyptian nationality are in a much less favorable position compared to others, then the implementation of special measures for that community would not only not be against the principle of equality, but it would contribute to the achievement of basic equality" the Analysis states.

According to the data provided by the local centers for social work for the Analysis, there are only seven beneficiaries of material allowances based on disability from the Roma and Egyptian communities. One receives this allowance in Kotor, five in Nikšić, and one from the Center for Social Work, which covers Berane, Andrijevica, and Petnjica.

According to the Analysis, there are only four users of daycare centers for children with disabilities - three in Herceg Novi, one in the Day Care Center for the area of Berane, Andrijevica and Petnjica. These data do not reflect the actual state of affairs because many municipalities, such as Podgorica and Ulcinj, do not keep records of users by nationality, although according to the 2011 population census, a large number of members of the Roma and Egyptian communities live in those cities, and this is where their problems are most pronounced.

A disabled girl was a victim of arranged marriage, sexual abuse, and other forms of exploitation

Among the victims of arranged marriages, who are helped by the Center for Roma Initiatives (CRI), there is also a girl with disabilities whose uncle arranged marriage in Kosovo. CRI tackled the case in June this year.

This girl, with psychophysical development disorders, is 21 years old today. Some time ago, she was forced into marriage. She grew up with her mother and grandmother. When they passed away, her uncle took her away from Montenegro. He sold the apartment where she lived to neighbors without authorization. "According to the victim's statement, her uncle arranged a marriage for her in Kosovo and for illegal marriage he took several thousand euros from an unknown person. After being exploited in various ways due to her psychophysical condition, she was returned to Montenegro", Knežević tells CIN-CG.

After arriving in Montenegro, the girl was left to her own devices. She was sleeping in front of the building where she used to live. Then, according to the testimony, she also suffered sexual abuse from different people.

After the CRI became involved in the case, the girl was placed safely, and the apartment that belonged to her after the death of her mother and grandmother was returned to her. "We regularly have a psychological and educational conversation with her, and we support her in regulating legal documentation. She received an identity card and we are helping her receive a disability allowance," Knežević said.

Such stories about people excluded by society often remain untold. They usually have no one to stand behind and help them.

Knežević warns that an additional problem for persons of Roma and Egyptian origin is the unresolved legal and health status.

Many rarely use health services due to the lack of personal documents

"Strategy for Social Inclusion of Roma and Egyptians 2021-2025" recorded a problem concerning the frequency of healthcare services, with almost a third of Roma and Egyptians rarely utilizing this type of service. Those who do not visit a doctor have specified the lack of necessary personal documents required for visiting a doctor as reasons therefor.

"For a group of people still obtaining documents to regulate their legal status, institutions resolve cases ad-hoc. Lack of access to ID cards dramatically affects the chances of getting health insurance by which this group is put in a challenging position," it is stated in the document.

Bidaim works all day - repairing old washing machines and reselling iron and other recyclable waste. "Sometimes, I browse waste containers when we have nothing to eat. I'm not ashamed because I have no options. Without documents, I can't even receive social assistance," he says.

They need the basic conditions for life. Children who can't move have to use the outdoor bathroom.

Bidaim's family turned to many institutions and organizations for help - the police, the Ministry of Labor and Social Welfare, and numerous organizations... The institutions have yet to answer their requests. So far, the NGO Phiren amenca - Walk with Us helped them the most. They have provided them with wheelchairs to make the children's life a little easier.

"Due to unregulated legal status, these children are denied health care. They need special treatment that is unavailable to them," Elvis Beriša, an executive director of the NGO Phiren amenca - Walk with Us, told CIN-CG.

According to the data of the Ministry of Internal Affairs, from the beginning of the implementation of the new Law on Foreigners, which also deals with the issue of statelessness, as of October 2022, stateless status was determined for only nine people - six men, one of whom has since died, and three women. For 15 people, the procedure is ongoing.

These figures, however, do not reflect reality. According to the Case Study of the NGO Phiren amenca - Walk with Us, "Roma without regulated legal status during the COVID-19 pandemic" from 2021, out of over a thousand people included in the survey, as many as 198 adults and 216 children with unregulated legal status were detected.

"Most often, both parents have an unresolved legal status, but there are situations where the father or mother have status, but their children do not." Although it was clear that the official data did not reflect the actual situation, the research revealed the devastating fact that children are at a higher risk of statelessness than adults.

According to the Directorate for Foreigners, Migration and Readmission head in the Ministry of Internal Affairs, Dragan Dašić, Montenegro has mechanisms to find solutions to existing situations and prevent new cases of statelessness, as well as protect such persons. "Among them is the Law on Montenegrin Citizenship from 2008, which respected the principles of the European Convention on Citizenship, one of which is the avoidance of statelessness, as well as the recommendations of the Council of Europe on the prevention and reduction of statelessness, the Convention on the Rights of the Child, the Convention on reducing statelessness...", he states.

Dašić, however, warns that practice has shown that the response to requests for verification of citizenship status from other countries has been awaited for quite a long time. "That's why we are breaking the legal deadlines for making decisions. Another problem is that even the answers of people without documents who apply are often not precise enough and do not contain the necessary information," Dašić states.

According to him, at the International Conference on Statelessness, held in October 2019 in Geneva, our country, among other things, undertook to simplify the procedure for obtaining identification documents. "By introducing a court procedure to determine the time and place of birth of persons who were born in Montenegro outside the health system, as well as by the new practice of entering in the register of children born who were abandoned by their mothers or whose mothers do not have identification documents, Montenegro has fully created the conditions for registration in the birth register for all those born on its territory," Dašić explains.

However, in the Strategy on migration and reintegration of returnees in Montenegro, for the period 2021-2025, it is stated that the registration system in the registry of births, especially when it comes to persons outside the health system (stateless persons), is insufficiently developed. "Although, in theory, these persons had the right to citizenship of Montenegro or another state with which they have a connection, they could not register in the registry of births in Montenegro or the country of origin, which prevented them from participating in further registration activities and acquisition of other identification documents," it is stated in this document.

A 2021 case study conducted by the NGO Phiren amenca - Walk with Us showed that 30 percent of the total respondents did not receive help from the state during the COVID-19 pandemic. All of them were persons without regulated legal status. "It is estimated that over 30,000 Roma are stateless due to the breakup of Yugoslavia... The mapping also confirmed what the official reports on Montenegro show - that the heredity of statelessness is rising. As Roma and Egyptian families generally have a lot of children, almost all children inherit an unregulated legal status. This means that in a few years, this problem will grow, and the number of stateless adults and children will multiply. Montenegro does not deal with this", the study warns.

Children without personal documents have no right to social and health care

"It is challenging for PWD members in this community to enjoy the support, especially considering the necessary paperwork to deliver to different addresses. Also, the socio-economic characteristics of the community are making the situation even more complicated. We especially emphasize the problem of inaccessibility to health care," Beriša says.

A third of the children do not have health insurance, are not vaccinated, do not have a general practitioner, and do not regularly go for systematic examinations, according to the "Analysis of the needs for establishing services for Roma and Egyptian children in Montenegro from 2020".

According to the Analysis, the right to social protection is almost unattainable for Roma and Egyptian children without citizenship and registration in birth registers. "The parents of these children do not have enough material and non-material capacities to independently regulate the legal status of the children in Montenegro. Even when it comes to persons with citizenship, obtaining the necessary documentation is still a problem due to the low level of education and the absence of services for providing immediate legal assistance".

Respondents, who were contacted for the Analysis, and who are not beneficiaries of material rights through centers for social work pointed out that 72 percent of them sought help through those institutions but did not receive it, primarily due to unregulated legal status in Montenegro.

During the last year, nine Roma men and women contacted the Association of Youth with Disabilities of Montenegro for help. "However, except for free legal counseling and available transportation, they did not contact us for other support services. For example, for support services for living in the community, the services of the Student Counseling Office or the Employment Service, although we know very few Roma men and women with disabilities who have a job", Marina Vujačić, executive director of the Association, says for CIN-CG.

She points out that the development of support services and their availability to PWDs, especially Roma with disabilities, is at a low level or even non-existent.

Vujačić also notices a big problem in the state's attitude towards the PWD, which she sees as a homogeneous group. "Their real needs and demands are not examined, which is why the measures most often do not contribute to real progress and improvement of the living conditions of PWDs, especially some groups among them, such as Roma with disabilities. Institutions should work more thoroughly in the field of improving their position. PWDs must be more involved in all processes that concern them, and it is not up to the state to judge what is important for them and what is not".

Based on a 2016 study by the Ministry of Human and Minority Rights, the average life expectancy of the Roma population is 55 years. "For the sake of comparison, the life expectancy of the majority population in Montenegro is 76 years, which means that when someone is born as a Roma and Egyptian in Montenegro, they are expected to live about 20 years less than those who do not belong to this community", it is stated in that research.

The twins from the beginning of this article have less and less time. Until now, their parents have waited in vain for the children's pain to lessen at least a little so that life would be more bearable. This community has many more sad life stories, but no one seems to hear them.

GOOD PRACTICES REGULATE THE ISSUE OF STATELESSNESS

According to the United Nations Refugee Agency's "Resolving Existing Major Situations of Statelessness" from August this year, Sri Lanka is cited as one of the best examples of a country tackling the long-standing statelessness problem through legal and political reform.

The study highlights the case of the statelessness of the Hill Tamils, part of the population that has long been stateless in Sri Lanka. They are descended from laborers brought over from India by the British between 1820 and 1840 to work on tea plantations. The majority of them have continued to live and work in tea plantation areas, though some have been displaced to northern parts of Sri Lanka as a result of the waves of conflict that have affected Sri Lanka since the 1980s.

Shortly after Sri Lanka (then called Ceylon) gained its independence, the 1948 Ceylon Citizenship Act and the 1949 Indian and Pakistani Residents Act were passed. Both laws discriminated against the Hill Tamils, who, according to the 1964 census, numbered around 168,000.

It was only in 2003 that legal solutions that provided for the granting of citizenship on an automatic basis and the introduction of a streamlined procedure were adopted. Thus, the problem of the citizenship of the Hill Tamils began to be solved.

In the case study of the NGO Phiren amenca - Walk with Us, "Roma without regulated legal status during the COVID-19 pandemic" from 2021, it is stated that the system in Montenegro did not provide adequate ways of resolving the legal status for RE members. It needed to be clarified what documentation was required to be obtained to regulate the status. "The public call to resolve the legal status from 2015 had several shortcomings. Out of over 450 applications, only seven were accepted, while the others were rejected with an explanation that the legal status could be resolved in another country. Those people were not provided with any support but were unequivocally rejected. Another shortcoming is insufficient information among citizens. Many did not even know about the call, and they do not remember it being announced", the Study states.

According to Elvis Beriša, executive director of the NGO Phiren amenca - Walk with Us, Montenegro can solve the issue of statelessness by simplifying the process of obtaining legal status with permanent or temporary residence in the country. "Thus, stateless persons would be able to access state services (health and social insurance, disability benefits, right to employment). Hereditary statelessness should be stopped and all children should be registered in the birth register immediately after birth, based on the country of birth. "The child should receive the citizenship of the country in which they were born, without demanding the documentation from parents," Beriša concludes.