Often one has to change everything in life: image, thinking, conscience, work… We have one more story. This time it’s about a journalist who gave up her career and started helping people with disabilities.
Khorog is the most remote town of Tajikistan in the Pamir mountains on the so-called “roof of the world”. Frankly, I never thought how many disabled people lived in this sparsely populated region of Tajikistan. For some reason, there have never been foster homes or social orphanages. People are close to each other, they live in their communities and all are related.
During the last School of OGO in Dushanbe, we occasionally met with Lailo Nafasshoeva, the head of Association of Public Organizations “Parents of Children with Disabilities “Savob” (APOPCD “Savob”) from Khorog. We were surprised to learn about how much interesting work they do.
“Never say never again”
Lailo starts her story with a story about herself. It turns out we are colleagues. She had been working at a local TV broadcasting company for several years, and made a successful career. She and her husband are bringing up two kids. The young woman gave birth to their third child and was on her maternity leave. It’s difficult to say if some children are different from healthy children at an early stage of their development. Her child was developing slower and after several consultations with doctors, Lailo learned that her child was born with a mental disorder, and was lagging from other children in development. Initially, it took some time to overcome the strong shock and the woman did not know what to do. Her maternity leave was over and it was time to return to work. However, she could not find a nanny to take care of her child and Lailo did not know how to bring her child up.
In this difficult time, Lailo’s mom helped her. She agreed to take care of the child and for some time Lailo’s life became easier. But for Lailo’s mother, given the age, it was difficult to take care of the sick child.
I used to make TV programs about people with disabilities but never thought how mothers of such children live and what they experience,” – says Lailo Nafasshoeva. – And it happened to me, I realized that I can’t continue working as a journalist because I have to be focused on the creative job. You are either a journalist or not, there is nothing between. I left my work,” – she said.
“Savob” is a good deed
For a long time Lailo was looking for a good place to help her child’s development. “We don’t have special institutions for the people with disabilities, not speaking about children in our region,” – explains Lailo.
After a long search, she found such a place. This was a rehabilitation center for people with disabilities called “Nur”. She asked to be hired, so that she would learn how to take care of sick children. But they did not have vacancies, so she started volunteering. Sometime later she realized she could open a public organization herself; an organization for such parents as herself. Besides, she often met other mothers whose children had either physical or mental disabilities. She spoke to the initiative group of parents in 2009 and established the Association of parents of children with disabilities. Since it included two public organizations “Nur” and “Hoharon”, the association was named “Nuri hoharon” (“The light of sisters”). In 2011, after its mission was defined, Lailo changed the name of the organization to “Savob” which means a good deed or kindness.
Make other people’s lives easier
“Savob” chose to focus on providing psychological support for parents, consultations on legal and social issues, rights of the children with disabilities, and facilitation of access to education and realization of the concept of inclusive education.
The organization initiated educational trainings in 12 of Khorog’s schools for 240 teachers. The teachers were acquainted with the concept of inclusive education. The association organizes regular meetings with parents. They get consultations on raising children with disabilities, on the necessity of education for such children and paper formalities due to a child’s disability. They also give lessons on the protection of rights for children with disabilities.
Until now, APOPCD “Savob” together with the public organization “Machruhon”, society of blind and deaf and mute of Gorno-Badakhshan Autonomous Republic implemented several projects, aimed to involve children with disabilities. “The participation of children with disabilities in the summer vacation camps became a good tradition,” – says Lailo.
Several years ago, in a similar partnership, “Savob” successfully resolved an issue of building a special wheelchair ramp at the entrance to the municipal clinics. At school #2, the entrance doors to the restrooms were widened, so that children in wheelchairs could use the restrooms independently.
There is a lot of work, but we will succeed
There are many events within the projects implemented by “Savob”. Recently in Rushan, a working meeting of parents’ public organizations of Gorno-Badakhshan Autonomous Republic took place in the framework of Member Effort Unification Project of “Coalition for Sustainable Facilitation of Inclusion for Children with Disabilities.” One of the main questions discussed at the meeting was identification of needs and distribution of means for development of inclusive education.
Additionally, conversations are taking place regarding organizing a gala-concert in Khorog with support from “Eurasia Foundation of Central Asia” to increase society’s awareness about the potential of the people with disabilities. Such a concert will bring together professional singers, musicians and people with disabilities.
In past years, the “Savob” team successfully implemented several interesting and important projects. For example, in the premises of school #1 of Khorog, Gorno-Badakhshan Autonomous Republic, they started a training course with 20 children with needs in education and their parents. The second project is related to a campaign to advocate in four regions of Tajikistan. It was implemented last year. The “Integration of children with disabilities into the society” project helped 90 parents to increase their potential on legal issues related to disabilities.
We work closely with the state,” – says Lailo. – “Two years ago, with help from the deputy chairman of the oblast Guldasty Orumbekova, we organized the Coordination Council for Inclusion and Early Intervention” where “Savob” actively lobbies interests of people with disabilities”.
The most important achievement
The essence of inclusive education is providing access to schools for children with disabilities. This is the main message Lailo Nafasshoeva decided to implement in her activities. Today, the center helps 20 young people with disabilities to get education and a profession. For them there are sewing and cooking training courses.
Lailo thinks that the greatest achievement of “Savob” and other partner organizations in Khorog is that through many meetings with school teachers, and parents of the children with disabilities, they succeeded to change understanding of the majority toward the necessity to introduce inclusive education. Now, 13 children with disabilities can attend school.
There are still many problems: some teachers and administrators from several schools don’t have experience of working with children with disabilities, especially with the ones who have mental disabilities. For that purpose, in August of this year in Khorog, a training titled “Contemporary understanding of early intervention” took place. It was initiated by APOPCD “Savob” and it brought together workers of rooms of early intervention, kindergartens, parents of children with disabilities, professionals of medical, psychological and pedagogical consultancies and early childhood development centers from Khorog and the regions. To conduct the trainings, Anna Samarina, a famous Russian specialist from Saint-Petersburg Institute of Early Intervention, was invited.
A mother of a child with disability, Umrigul Konunova mentioned that thanks to “Savob” she learned how to properly take care of her child, and to develop and customize individual intervention programs.
In the past month in Gorno-Badakhshan Autonomous Republic there have been three inclusive classes opened. Recently, on September 20th, another inclusive education class was opened in Vidoch village, Roshtkalinsky region. Administrators of the class noted that the class will involve 11 children with disabilities from the near villages.
I think that our main work is in changing how people think and their mentality that we had for centuries, – says Lailo. – All those stereotypes don’t help people to move forward. Through our trainings and seminars, through our personal experience we could prove that disability is not scary, that it’s not the end of light. Based on personal experience and “equal-to-equal” principle we could bring together people with disabilities, and break through the barrier that was putting our society apart. Before, I was afraid to say that my child has a disability. Now, everything has changed, because I changed. It is important to correctly deliver the information to society and you will have more like-minded people”.
In accordance with official statistics, there are almost seven thousand people with disabilities in Gorno-Badakhshan. Of them, 1113 people are children and teenagers younger than 18 years old. In Khorog there are 200 such children. Currently, there are 42 public organizations working with people with disabilities in the Gorno-Badakhshan Autonomous Republic.