KAPALA CHISUNKA, Lusaka
WHEN she stood on the podium to speak, she spoke not as the wife to the speaker of the National Assembly but merely as a parent to a disabled child; a child she loves dearly.
In a moving testimony, Ethel Matibini explained the emotional and physical challenges of having a disabled child. Mrs Matibini narrated how she had to give up her job so that she could take care of her son full-time.
â€œWe have children; four girls and one son, who is disabled. It has not been easy to take care of my son especially that after he was born medical staff struggled to diagnose what he was suffering from,â€ she said.
After making frequent visits to numerous health facilities, Mrs Matibini said her son underwent an operation at one year. Unfortunately, things did not improve for the baby. At three years old, Mrs Matibini decided to travel to Zimbabwe in the hope of finding a lasting solution to her sonâ€™s condition.
â€œIn Harare, I met a doctor who after seeing my son counselled me and prepared me on how to care for my son long on a long-term basis because at the time it was very hard. I was told that my child is mentally disabled; that is extremely difficult for any parent to hear,â€ she said.
But because she loves her child, Mrs Matibini continued to love and care for her child and ensured that he was enrolled in school. By age nine, however her sonâ€™s head started growing abnormally. It was at this stage that Mrs Matibini was informed that he would not live beyond 10 years.
â€œI went home broken after that visit to the doctor. But, my son is still alive. He is now 22 years old. We took him to school but he out-grew it and then we did not have anywhere to take him.
Yes, he has challenges and he has retarded speech but we love him and we thank God he is well and alive. I am strengthened by my son because he knows God and he is prayerful,â€ she said.
Mrs Matibini said it is difficult having a disabled child because the current systems in Zambia do not help children with disabilities. Regrettably, Mrs Matibini said society discriminates against disabled children and calls them derogatory names; a situation she said has contributed to parents isolating their children.
Challenges faced by Mrs Matibini in dealing with a child with disabilities are not isolated as there are many more parents and guardians struggling to raise their children with disabilities.
Fortunately, the Education Outreach for Children with Disabilities (EdOCD) was formed. EdOCD, a non-profit organisation has created hope for many parents raising children with disabilities.
EdOCD was established to promote education and build capacities among children with disabilities in Zambia.
The organisation envisages a society free from all forms of discrimination and injustice against children with special needs, thereby providing equal educational opportunities for children to achieve their desired goals and aspirations in Zambia.
According to EdOCD chairperson Kangwa Nkandu the concept was developed after observing the challenges faced by children in accessing education.
â€œGiven the challenges faced by such children in urban areas despite having some services available to them, it goes without saying that the obstacles that they face in far flung areas are greater,â€ Mr Nkandu said.
First lady Esther Lungu said there is need for concerted efforts in addressing challenges affecting children with disabilities.
Mrs Lungu, who officiated at the launch and fundraising cocktail in Lusaka recently said children with disabilities are one of the most marginalised and disadvantaged groups in society.
â€œChildren with disabilities and special needs are dear to my heart. Children with disabilities deserve special love; they have something to contribute to the world if given a chance, they are beautiful and dear to God,â€ she said.
Mrs Lungu, who also pledged K15,000 towards the operations of the organisations said it was regrettable that children with disabilities are often barred from participating in social economic activities of the country.
â€œToo often children with disabilities are made to feel like they do not count. They are made to feel like they do not have anything to contribute to the development of the country. This attitude is a dis-service to the children, to their families and our country,â€ she said.
Mrs Lungu said it was gratifying that EdOCD was founded on the philosophy of creating a community that is knowledgeable about the rights of children with disabilities through awareness and education.
â€œChildren with disabilities face discrimination, negative attitudes, lack of adequate policies and legislation and are often excluded from accessing health care, education and realising their dreams. It is true that often children with disabilities are among the poorest population,â€ she said.
Earlier, deputy minister of Community Development, Mother and Child Obius Chisala said Government attaches importance to uplifting the standards of living of the vulnerable groups with emphasis to persons with disabilities especially children.
Mr Chisala said Government has put in place a number of measures aimed at ensuring children with disabilities are taken care off through interventions such as the public welfare assistance scheme.
â€œThe future of Zambia hinges on the kind of foundation we lay for our children. Therefore, if we are to continue to register progress, we have to ensure that no child is left behind in accessing education and health services in our country,â€ he said.
Mr Chisala said Zambia has made strides in the domestication of the convention of the rights of persons living with disabilities as well as mainstreaming policies and programmes.
And M r Nkandu said the organisation will work towards improving the lives of children living with disabilities.
He said EdOCDâ€™s geographical area of focus and operation is rural Zambia starting with Kasempa and Mufumbwe districts in North-Western Province.
KAPALA CHISUNKA, Lusaka