Self-defying syndrome

A strong but sensitive woman, persistent and reasonable, are the characteristics that the director of the center "Down Syndrome Kosova", Sebahate Hajdini-Beqiri, wears when her colleagues talk about her. Her activism is estimated to have served Kosovo, from time to time, more than the work of the institutions

A delicately knitted beige sweater would flatter a little baby, as if he knew whose boy he was going to be. In the woolen jacket, woven thread by thread, Genci's mother, Sebahatja, would find room to wrap many, many of his friends, who were born a little more special. It was 2005, when she, as a young mother, would give birth to a boy. An extra chromosome in Genci would determine how he would grow up and how his mother would parent him. With very little information, in an extremely prejudiced society, with poor institutions in terms of services, she was alone in her mission to raise, without missing anything, a child with Down syndrome. Two years after the birth of Genci, Sebahate Hajdini-Beqiri decided to make a turn. 

"My mission was defined with the birth of my son, Genci. My first child, who has Down syndrome. Genci was born in 2005. The situation in that period, in 2005, the circumstances, the low level of awareness about Down syndrome, the misinformation that was given to me, at certain moments I felt a lot of discrimination from the public institutions themselves, this was a among the most powerful reasons that I have started the initiative to find other parents with the idea to get together and establish an association, which would work for the rights of people with Down syndrome. And everything started in March 2007, when we laid the foundations of the "Down Syndrome Kosovo" association, she says.

Strongly confident in what she wanted to build, Sebahatja began to gather parents, whom she did not spare to look for even in the health institutions where Down's syndrome diagnostic tests were performed. She was always ready to understand the opposition of parents to join her to change a prejudiced circle. He was rejected, but he did not give up. 

"When we talk about that period, we have also had many cases where parents kept their children inside the home. They did not insist on sending them to educational institutions. All of this has happened as a result of parents being burdened by stereotypes and prejudices from Down syndrome and normal that this has influenced some of the parents, and then it was a much larger number, to isolate themselves and feel guilty because they have a child with Down syndrome", she says.

Sebahatja found a number of parents. They identified the challenges. They set the objectives. And, they started the construction of a road in which even the state was late. With few conditions, but with great zeal, once at home and then in a small office, she began her efforts to seek rights and well-being for people with Down syndrome, who were not being treated by institutions.

"Exactly because there has been a large lack of state aid, this is the reason why I started the initiative to find other parents to come together to establish the association. If we go back over the years and analyze the situation of where we have been and where we are now, I am always talking about the support of public institutions, there are obvious improvements in the positive aspect. However, fulfilling these needs is not enough. While we are still today faced with a stable lack of support of therapeutic and social services, services which play a very important role in the development of the potential of an individual with Down syndrome", she emphasizes.

Many years of work in the association, Sebahatja says that he only got awareness from public institutions about what the services are for a child with Down syndrome and what staff are needed for treatment. But, she did not sit down and wait for the advancement that the state would once make in this direction. She took over powers that were neither her obligation nor her responsibility. With her own funds and donations, she began to provide various professional services, which she now offers free of charge in five centers of the association throughout Kosovo.

"I remember very well during the year 2010-2011, I personally contacted a speech therapist with the request that my son be treated in his office, due to communication difficulties. I know that the value that the speech therapist asked me at that time, financial value, it was 600 euros a month for the provision of language and communication services that my son needed, and it was normal for me, but also for most parents at that time, to cover these financial expenses. Now we are in a completely different situation. I feel extremely good that today within the five centers of the "Down Syndrome Kosova" association, one of the services we offer is the speech therapy service, and we are able to offer this free of charge to our beneficiaries ", she adds.

Gresa Godoni, mother of a 10-year-old boy also with Down syndrome, found support at the "Down Syndrome Kosovo" center, which, despite the challenges, created opportunities for her son to feel appreciated and accepted in the area where he lives.

"They had a very small office and the conditions were, not to mention, miserable at that time, 10 years ago, when I knocked on their door. Two ladies were there, one of them Sebahatja, I went and simply confessed about my situation. I remember that Sebahatja was in tears, because in addition to showing that the child has this syndrome, at that time my son also had many health problems. This aggravated the situation even more. I remember she was so tearful. But, in our first meeting, she gave me the feeling that she was a very strong woman", says Godoni.

Within the association there is also room for parents who wait for their children to receive services. They engage in symbolic activities until they are informed about the difficulties, but also the successes that their children reap. Godoni spares no thanks nor good words for the center's staff who say they challenge the system.  

"Sebahatja is ready at any moment to stand against the demands that we raise for our children. She is close to us in every step of her life and she tries to give support to each parent either through the institution she directs or through other fair and proper mechanisms. The special thing about Sebahate is that she is a mother of a child with Down syndrome, who I believe works with her heart as well as her mind. However, the fate of all of us is to have an open door in an institution that is run by a really dignified woman", she declares.

This is how Sebahatja is described. Strong, but sensitive at the same time. A good man, a devoted mother and a wonderful director, these are some of the traits that Dionis Ferataj highlights in Sebahate, whenever he is pushed to talk about her. Dionisi is one of the best examples of the results produced by the "Down Syndrome Kosovo" association. As a 24-year-old, he holds two jobs. One in the public enterprise KOSTT and the other in the association. Performs administrative work without hesitation. Although well-articulated, he often remains speechless against Sebahate's activism for the rights of people with Down syndrome.

"Sebahatja, a good, wonderful mother, respects children as friends, it's an interesting feeling. It is understandable. Sebahatja knows, as soon as he understood us, what business do we have. A very wonderful director. I am very grateful to Sebahate, he gave me the opportunity to work at KOSTT, as an administrative assistant, to prepare letters, documents, copies, scenarios, meetings, I am very satisfied with what a worker I am", says Dionisi. 

There are many such examples within the association.

"We have many success stories of individuals with Down syndrome. They have reached where we set out to reach as people with Down syndrome. We have managed to create an advocacy group within the association. We have the advocacy group where people with Down syndrome advocate for their rights themselves. I believe that this is one of the biggest achievements of the association", emphasizes Sebahatja.

Dionysius is not missing in this special cause, who says that the director is satisfied with his dedication.

"Sebi is very satisfied... With greater dedication, I support the association, I am the voice of the association for work, for greater activities. I am the unit of the association for advocacy for the rights of my friends and myself", Dionisi assesses.

The association "Down Syndrome Kosovo" counts about 1 thousand people with Down syndrome and over 300 of them provide direct services. There are two programs; that of intervention and early education, where therapeutic services are offered for the age group of children from 0 to 12 years old and the program for autonomy and professional training. Sebahatja says that there have been many beneficiaries of both, whose results she is proud of. However, it is disappointing that their commitment does not find much appreciation in state institutions.

"We have about 26 people employed at the country level, of this number only one person is employed in a public institution. All others are employed in private institutions. This situation is an example of how difficult it is to implement the law on the training, retraining and employment of persons with disabilities... Our state has not yet created a system of support for citizens with disabilities, which as a group of citizens, the most sensitive of society, to have the right support at the right time. Although the laws we have in force guarantee rights, services and great opportunities for citizens with disabilities, the laws on the ground are not fully implemented", she emphasizes.

Sebahate's activism does not stop only specifically at people with Down syndrome. She is considered to have done a great job during the preparation of the Law on Persons with Disabilities. This conclusion is given by Minire Begaj-Balaj - director in the Department of the Ministry of Finance, Labor and Transfers.

"I have had the pleasure and honor of working with Mrs. Sebahate, a strong woman, a very dedicated woman, who has worked tirelessly for disability in general, with particular emphasis on Down syndrome. It is the best example that has been followed in Kosovo and I think that she has made a valuable contribution to this process and a good example as a woman who has worked against the interests of people with disabilities. This cooperation, I can say with full responsibility, is a pleasure to work with a woman like Sebahatja, because she knows what she wants, it is very clear in the demands she articulates", said Begaj-Balaj.

Begaj-Balaj says that Sebahate's commitment and persistence had an impact on raising the level of the Ministry's policies regarding people with disabilities.

"We have already started drafting the draft law for the recognition and assessment of the status of persons with disabilities, which will include services for these persons, and every day we see that it is influencing the drafting of policies that the draft laws or the laws are stable", she adds.

Down syndrome is a chromosomal disorder and not a disease for which a cure is required. Although Sebahatja insists that the state create opportunities, well-being and a better standard of living for these people, as a seasoned activist, she is convinced that these do not come or happen without an active citizenry and an emancipated society.

"Let each of us work with a greater conscience, let us work hard for the country, because only we as a society can build a better country", she ordered.
Genci has already grown up, changed his style, refined his taste and woolen clothes no longer impress him. But, until Genci's shirt, for the children who will wear his jersey, Sebahatja will not be stripped of activism, which is rare in Kosovo both in terms of quality and quantity.

(This article was written within the "Human Rightivism" project, which is implemented by "Integra" and supported by the Community Development Fund - CDF and the Embassy of Sweden in Kosovo).