Turning despair into hope:With Swiss Government, UNDP helps women with special needs break free from isolation
When Sanije and Hasan started married life together, their daily life and dreams for the future were vastly different than they were some months ago. Their dreams were shattered when their one year old daughter Sentilijana was diagnosed with spastic cerebral palsy tetraplegia-a condition that affects all four limbs. With no specialized medical assistance in her home town of Lushnja, Sanije had to take a 2,5 hour trip twice a week to go to the Capital Tirana to get the tailored medical assistance her daughter needed.
Sentiljana's mother remembers with tears in her eyes and a broken heart: “Imagine what it meant to travel by bus with a child with disability for 2.5 hours of trip, twice a week, to get the needed treatment. The high cost of the physiotherapy had a heavy toll on our family income. She needed 24 hours support so I could not go to work myself.”
For sixteen years, Sentilijana could not play with her friends, could not enjoy a walk outside of her home, could not understand what it meant to live the wonders of the outside world. Her mother would not let her play with friends because she was afraid of physical abuse and violence.
Sentiljana’s and her mother’s lives took a turn for the better when a Center for Children with disabilities was established and starting functioning in Lushnja. The center offers services to 44 girls and boys aged from 5 to 16 years old, diagnosed with intellectual, physical and sensory disabilities. Nine professionals such as social workers, physiotherapists, school psychologists and speech therapists, provide individual and group therapy, teach life skills and work with their parents and other family members. Sentiliana attends the center four hours on daily basis. When one day she was sick with influenza, she refused to stay at home. This is a good sign.
“When she came at the center, she could not walk, she could barely move her hands, and had to cope with painfully stiff muscles. The specialized physical therapy she receives every day is showing first results. Her deformed spinal column is showing signs of improvements. We had trouble straightening her arm and legs. We had to work with her family members to inform them about cerebral palsy and to give them helpful instructions to help care for Sentiliajna. What made her situation worse, was the complete lack of social and personal skills” says—Arian-the Physiotherapist working at the center.
“It is not only that my daughter’s health has improved, but most importantly, attending this center has changed her life. Without the services she receives at the center, she would not be able to dress or feed herself. This has helped her to become more independent too. She is more confident and shows interest in small but meaningful every day moments in her life. I have never seen her as happy as she is now” says Sanije.
What once looked impossible has happened: She has gained social skills too. She interacts with family members and her friends and this makes her so happy. Sentiliana seems to have broken free from years of isolation and exclusion. Her mother’s life has changed too. Now she has more time for her self-development and support to her family. She is planning to start a vocational training to acquire tailoring skills so that she can work from home and get her family out of poverty.
In Albania, men and women with disabilities face a number of disadvantages and discrimination. 2011 Census data show that only 55.6 per cent of persons with disabilities over 15 years have completed basic education. 8 in 10 working-age adults with disabilities are out of the labor force. This is further compounded by poverty, isolation, lack of access to services. The lack of community-based services causes persons with disabilities to turn to expensive private service providers. The situation is worse for women with disabilities. Despite the lack of accurate data related to women with disabilities and violence, the latest UNDP study “Invisible violence–An overview on the phenomenon of violence against women and girls with disabilities in Albania” indicates that women and girls with disabilities are more prone to gender based violence and multi forms of discrimination on grounds of their disabilities.
To tackle the situation and to help the country advance social inclusion agenda, the Swiss Development and Cooperation Agency partnered with the Government of Albania, UNDP and other UN agencies to implement a multidimensional programme “UN Support to Social Inclusion”. The programme, amongst other, works to support the rights of women, girls, boys and men with disabilities to be part of mainstream society and ensure they receive equitable, inclusive services as per their needs and that they have a say on issues that affect their lives. The programme also promotes a better understanding of disability issues and the gains that could be derived from integrating them better in every aspect of the political, social, economic and cultural life of their communities.
Both Sentiliana and her mother feel empowered, cared for and determined to take the best that life has to offer. They are so much loving this new-found freedom, this new life. Being a woman with diverse needs, does not make you an unequal member of society. Diversity is a value.