Nepal Population Report 2078 B.S. shows total population of Nepal is 2,91,64,578, out of which a total of 2.2% are recorded to be persons with disabilities. I am not sure if my child is included in this number. I was not at home when the enumerators came and those present at home do not recall being asked about disability in our household. And, it has only been two weeks since he received his type A red disability card issued by the State for completely dependent persons with disabilities.
Nepal ratified United Nations Convention on the Rights of Persons with Disabilities in 2011, and has an Act relating to the rights of persons with disabilities 2074 B.S., preamble of which states that the Act is in force to ensure the environment that enables persons with disabilities to earn self-reliant and respectful living by empowering persons with disabilities and getting them to have participation in the process of policy making, and development.  The five Chapters of the Act (Chapter 3-8) guarantees the rights of overall population with disabilities, special provisions for girls and women with disabilities, children with disabilities, including special measures for education, health, employment opportunities not limited to concessions granted to people with disabilities. Yet, this mother based on her six-long years of experience in mapping implementation of provisions of this Act, cannot rest at ease. This article is just a general overview of that map.
Pranil, my child’s Type A red disability card by Social Security Department under Ministry of Social Security, will bring him a monthly allowance of NPR 3990/- which is given every three months. The basis for this set amount is not known to many including me who have asked around. This allowance does cover some daily expenses, i.e., but it is no way near to how much this Type A red disability card holders and their families have to spend on their daily therapy sessions ranging from physio, occupational, speech and vision. For Type A red disability card holders, these are life-long sessions. While government facilities are far from being a functional facility addressing these needs, private centres are successfully thriving on it charging not less than 700/- per session that is as short as 20 minutes or as long as 60 minutes. Hence, accessing therapy facilities for children with disabilities entirely depend on financial status of their willing parents.
I have visited a couple of rehabilitation centres that receive government funding. These rehabilitation centers are usually the ones set up by the parents of children with disabilities. Most of them are run like an unkempt day care play group centres which again lacks well-equipped professional service. Therefore, many parents depending on their willingness and financial conditions, are compelled to take their children to private or donor-funded therapy rehabilitation centres which comprise of speech, physio, vision, behaviorial therapists. However, they are either overwhelmed with the number of incoming children or are indifferent to individual cases and see each child with disability as a number.
Some children like Pranil need integrated sensory development therapy which requires a team of therapists across disabilities, i.e., speech, behaviorial, occupational and physiological to hold joint sessions. Interestingly, this does not happen even if the parents are told that it would be done. Each therapy session is in isolation of another. According to American standards, this integrated therapy requires a minimum of mandatory 40 hours of weekly sessions. In Nepal, even if the parents insist, they are told to bring the child every alternate day for a 20-60-minute session pointing out that the child will be tired and uncooperative if he/she is brought every day, and that the parents should also be conducting these sessions at home. I agree that parents play an important role, yet, passing of the buck to the parents is not an answer to the lack of professional support that these children require.
Most of the hospitals and clinics is void of disability friendly environment both in structure and behavior. Department of Drug Administration has not authorized sell of seizure preventative spray for our children experiencing regular episodes of seizure. Nepal government has provision for inclusive education but I am always haunted by a sharing of a blind school boy who was told by his peers, ‘why do you have to study with us?’ Even as a play group toddler, Pranil had been rejected by his peers. There are sign language schools and a blind school till higher secondary level. But are our higher education institutions equipped to nurture knowledge and learning rights of these children?
Often, parents of children with disabilities are repeatedly told to be positive. But we cannot be positive when
– our wheelchair user children cannot travel in public transportation
– our sign language user children have limited options and opportunities for higher education and often resort to taking what is called “vocational studies” that limits their occupational options.
– our Braille user children have conditioned access to their course books and their educational syllabus
– our children are vulnerable to physical and psychological violence, and exclusionary behavior perpetuated by ableist definition of this society
– our children are easy prey to pedophiles,
– our children are isolated and bullied by their peers. And this begins at an age as young as play group toddlers,
– our children with neurological conditions are called ‘retards’ even by medical professionals
How can we be positive when rest of the society and State mechanism ignore that parents are desperately navigating support systems available in both private and public health institutions to help their children?
MP Raghav Bir Joshi of Nepal’s first Constituent Assembly in 2011 was barred for six months to use his sign language interpreter to speak in the parliament. At the same time, Indra Maya Gurung, wheelchair user MP of the same Constituent Assembly was repeatedly reprimanded by the House Speaker to stand up whenever she spoke in the parliament.
How can parents be assured when in an everyday basis, they see, read, experience and struggle in this kind of social-political scenario ? The parents struggle can rest albeit only when no parent has to live in this cliffhanger concerning their children. The Act relating to the rights of persons with disabilities 2074 B.S. has to be lived by every persons irrespective of ability or disability in this country to affirm that they truly live in an inclusive country.
 Preamble, Act relating to the rights of peoples with disabilities 2074 B.S.
Pranika Koyu is a writer/researcher/campaigner exploring human rights-related issues, mainly identity rights across gender, disabilities, and indigenous ethnicity. Her published works are Bhaav, Ambar Ko Dhun.