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President’s Words

In Nepal, there is very little information available on ID. A decade-old data estimates that there are 4.5 million children with disability in Nepal, out of which 1.5 million are children with ID and autism. Due to lack of information and public awareness, these children with disability, especially female children with ID are facing discrimination in their daily lives. These children are consistently denied their rights to health care and education, and often they are even denied the right to live their life with dignity. Many families believe that children with disability are a curse. They feel that their disabled child has brought shame upon the family and these family members fear that that they will lose their prestige in the community. These negative attitudes are much prevalent when the disabled child is a female.

“Truly, I am very afraid for the future of my daughter. My concern and worry for her has led to many sleepless nights. My daughter needs constant supervision – from using the toilet to washing her face – if I fail to supervise her for even a short time, she soils her face with urine and fecal matter. Thus, my greatest concern is the start of her menarche (menstruation) – this is a big challenge.”

In our neighborhood, there is a girl with ID who died because of mistreatment and neglect by family members. Being a mother of a daughter with ID, this tragic event inspired me to work in this field. I faced an uphill battle while trying to establish an organization to promote the welfare and protect the rights of individuals with ID. Finally, I established the Parent’s Federation of Intellectual Disability (PFID) in 2011 with support from the Norwegian Association for Developmental Disability (NFU). I have been advocating for the rights and inclusion of individuals with ID for the past 20 years, and I consider the establishment of PFID as a part of my legacy. I was the Founder and President of PFID, and I got to serve in the role of President for four years. PFID has a rich history of advocating for the rights of individuals with ID. The federation is working tirelessly and raising its voices in the following areas:

1. Establishing separate schools/care centers for males and females. Each center needs to be established in collaboration with parents of children with ID.

2. Advocating that the Government of Nepal recognize ID as being different from other forms of disability such as physical disability. Individuals with ID face unique challenges such as limitations in situational awareness (i.e., situations that are dangerous to their well-being).

3. Organizing periodic meetings of guardians of individuals with ID for discussing their status, their progress, as well as the challenges they face, and potential solutions

Mrs. Subarna K. Chitrakar
Mother of Lachana Chitrakar, female with ID