According to the latest UNICEF data and the National Organisation of Persons with Disabilities, children with disabilities continue to face many difficulties and obstacles in exercising their rights, despite the fact that the Republic of Serbia has ratified all relevant international conventions, adopted strong laws and policies, and has made progress in the development of inclusive services. For example, 45 percent of parents with children with disabilities say that they or their children have experienced some kind of insult, disparagement or harassment on the ground of disability. In 24 percent of the families, one of the parents had to give up work to care for the child, and the parents often faced with the employer’s lack of understanding of additional obligations related to child care. Child support services in the family environment (home assistance, day care, personal companion) are usually not available to children with disabilities and their families. As much as 16 percent of citizens and 18 percent of pupils think that discrimination against people with disabilities is acceptable, while between 25% and 47% of children with disabilities experienced violence.
On the occasion of December 10th, International Human Rights Day, our colleague, Vuk Raičević, spoke with Nadica Blažević, President of the Association of Single Parents and Children with Disabilities Blue Shall from Belgrade, and her 22-year old daughter Marina. He visited them in the premises of the association, where its members were creating New Year's greeting cards, intended to be distributed in order to collect the funds they needed to pay the rent for the association’s premises.
When was your association established and what is your activity?
Nadica: Our association was established in 2010, and its members are children with disabilities from all over Serbia, regardless of their diagnosis. When I decided to establish an association, I was a single mother of three children, one of whom was a child with disability and unique diagnosis in the world. I consider that such an association was necessary, since a significant number of single parents care about children with disabilities. From the very beginning, we wanted to make children and young people with disabilities more visible in society and to include them in cultural and sports events, but also to organise different events, such as sports games for children with disabilities "I Want to Play", which we organise each year. We also organise "The Days of Vuk”, dedicated to Vuk Karadžić who was a person with acquired physical disability and great achievements. Participants come from all over Serbia. In addition, we organise public appearances and free summer vacations for our children. We also provide necessary support to parents.
What symbolises the name of your association?
Nadica: We strive to strengthen the family as a structure, to involve all families in the activities we implement, because in this way the individual is empowered. We want to encourage other families of children and young people with disabilities to open up, not to be isolated in their homes. We encourage them to open their shell and show their pearl. Every child and every family is like a shell that contains one beautiful pearl. However, if the shell remains closed, the pearl will not be seen. The shell is blue, because it is the colour of the sky, and the sky symbolises limitlessness. And the opportunities of every child should be limitless.
Does our society encourage children and young people with disabilities and their families to open up?
Nadica: Unfortunately, it does not. Prejudices and stereotypes on disability among children and young people are still widely spread in our society. It is primarily a consequence of the lack of information that leads to misunderstanding, and finally to non-acceptance. In such an atmosphere, it is a huge sacrifice also for the parents who face great challenges and pressures on a daily basis, both in their day-to-day activities - at work, in public transport, on the street, at doctor’s, at school, and within their families. The siblings of children with disabilities are also in a difficult position because they are often stigmatised by society, just like their parents.
How are social attitudes transferred within the family?
Nadica: Our members include children with autism, cerebral palsy, Down syndrome, hearing and sight impairments, with rare diagnoses in Serbia and in the world, as well as children with acquired disabilities. We always highlight that "a child is a child to be loved and understood". Our children are not children with special needs. Their needs are the same as the needs of all other children - to be loved, to be educated, to socialise, to be supported, to develop their talents. However, driven by the wrong social norms and ignorance, many families retreat and become invisible, without giving a chance to their children. Such families see everything through the problem and do not seek a solution to the problem but live a life full of guilt and justifications. Some even consider their children to be a curse. After the child's birth, it usually happens that mothers are left alone. Nuclear and extended families reject them, while fathers, under the pressure of the family, often abandon them. I am a mother of three. My youngest daughter is a person with disability and I was left alone with my children to struggle. Such negative attitudes are even more pronounced in smaller communities, where the families of children with disabilities get smaller support. This is the reason why I moved with my children to Belgrade from a small village in Vojvodina.
Where are the roots of such an attitude towards children with disabilities and how can this problem be overcome?
Nadica: Problems appear already during the birth of a child. Our health care system lacks an adequate approach to a newborn with disability and its family. The mother leaves the hospital only with the diagnosis that the child has a certain disability, written in Latin, which in most cases she does not understand at all. She is not aware of the consequences or the needs arising from such a diagnosis. Therefore, the family receives the child unprepared, which causes fear and concern, both for the mother and other family members. This often leads to the rejection of the child, for the foregoing reasons. The same approach is then taken towards the future treatment of the child, his or her education, growing up and inclusion in society. Mothers and children should be provided with adequate support by the health care professionals in the maternity hospital, as well as by the family. They need the engagement of pediatrician, surgeon, special education teacher, psychiatrist, psychologist and all others who will first explain the diagnosis of the child, and then provide all the necessary information and support for his or her proper development and growing up, to all family members. Such treatment of mothers and their children in maternity hospitals would solve the problem of insufficient information, misunderstanding, fears and non-acceptance, thus preventing rejection in many cases. As regards society as a whole, there is also a lack of information about everything that children with disabilities and their parents face, and there is no sufficient knowledge of the nature of physical and mental disabilities. Children and their parents often experience unfavourable treatment wherever they happen to be. Each of us has repeatedly experienced reproaches and criticism for the behaviour of our child in public transport, shops, post offices. Sometimes people protest because we skip the line at the doctor's office. They avoid socialisation with our children and with us. Therefore, it is necessary to work on the education of the entire society and on increasing the visibility of persons with disabilities. In addition, year after year there are increasingly fewer social welfare services provided in spa facilities, which are crucial for helping our children. These services should be developed, not abolished. On the other hand, many families are not adequately informed about all support services available to them, and this is especially evident in smaller and rural areas.
What is your message for parents of children with disabilities?
Nadica: Do not perceive your child as a problem or concern. Believe in your child. I consider my Marina to be a gift and I am happy that she has just arrived in my life. It is very hard to face all the difficulties of parenting in our case, but you have to remain brave, persistent and have to give unconditional love and support to your child. My daughter and I have spent more than 2,000 days in hospitals and spas. I am unemployed, although I had worked as a school teacher for twenty years. I live in a rented apartment. I did not allow to be affected by that or by the curious looks of unknown people in public transportation and on the street. When they are looking at us with astonishment, we give them a smile, which makes them feel ashamed and see that they are wrong. Thanks to all this, my daughter has been able to dedicate to what she likes most - dancing. Today she is proud to be the world vice-champion in hip hop dance for children with disabilities. She received this prestigious award at the competition in Germany. Also, do not be embarrassed to seek help. Seeking assistance from a social welfare centre, psychologist or a psychiatrist, or a counselling centre, does not mean that you are not able to deal with your life, but on the contrary, that you have been proactive as much as you can. Support services exist to make life easier to you and your child. Finally, make sure to replace sterility and white colour, characteristic for health care facilities where our children have to stay for a long time, with various colours. Such are the premises of our association, where there is a creative chaos and where something new and interesting is always going on.
Finally, Marina sent her message to children with disabilities and their parents.
Marina: Every beginning is hard. But everything can be achieved with the support of the family. My Mum always showed me the brighter side of going to treatments, to a hospital or spa. She used to tell me that I would meet new friends there, that we would visit parks, eat cakes or ice cream. We used to buy some souvenirs for my brother and sister. I trained folklore in the village where I lived. I did not find it difficult to accept the change when we moved to Belgrade, although unknown people often stared at me in astonishment. I was not used to it in my village, where everyone knew one another. In my family, I have learned that everybody is different from others in some way and that there is no person without any difficulty in life. But these differences should bring us closer to one another and make our lives more beautiful. In the meantime, I realised that I would be able to dedicate to something new, such as hip hop. I was very surprised when I was given the opportunity to go abroad to participate in the world hip hop competition. I had no idea that I would pass eight elimination rounds and that I would win the second place, which made me very happy. I am particularly satisfied for becoming an independent choreographer and teaching Ana, who cannot see, and Esma and Selma, who do not hear, a choreography that brought them a great success in competitions. We have proved that it is possible to dance in the dark and in silence, but also if you are the only one on the planet with a certain diagnosis. If you have a goal and the will to reach it, you will succeed. I cannot say that I have completely recovered, but today, thanks to the support of my family, I can be independent in my life despite all the health problems. Happiness is our middle name.
Interview published in Ibarske novosti on page 4.
