Numerous NGOs, consultancies and advocacy groups play an active part in supporting the government in promoting inclusivity, influencing policies and providing support and prevention where possible to the persons with disabilities
When Dharma Devkota was five months old, she got burnt so badly that both her legs had to be amputated. In the aftermath, her muscles and joints seized up. At the time of her accident, Dharma and her family were living in the western hilly district of Surkhet. After her injury, they moved to Kailali, a district in western Terai, in search of a better environment for their daughter.
For years, Dharma was carried to school by her mother, and sometimes by her father. In rural Nepal, children generally start school when they are four or five-years-old. Dharma started when she was eight and would sometimes miss class when her mother was busy with the household chores or agricultural activities.
Now, incredibly, she is walking.
“It’s a dream come true, I have battled so long and so hard to get here. Over the years, there have been moments when I had lost all hope and felt suicidal,” said Dharma.
That is, until she met the community disability worker (CDW) through the Strengthening Rehabilitation in District Environs Programme. The CDW visited Dharma at her home and explained the process for getting artificial legs.
“I did not believe that my daughter would be able to walk and be independent,” Ranga Devi, Dharma’s mother, said. “And I never imagined that she would be able to cycle.”
Today, at the age of 18, Dharma is strong and independent with support from her second set of artificial legs. “She learned how to cycle in the period of a week and surprised us,” her mother said.
“At first, I wasn’t happy about going to the rehab and fitting an artificial leg, but it was pure joy.”My therapists motivated me and got me excited about it,” Dharma added.
She attends school regularly, loves reading science and mathematics. She travels to school and back on her bike. She studies in grade IX and dreams of becoming a nurse someday.
It is estimated that there are 600 million people living with disabilities globally. The vast majority (80 per cent) of persons with disabilities live in low- and middle-income countries, often in difficult circumstances due to the lack of suitable services and opportunities. The needs and rights of persons with disabilities have often been overlooked in the development programmes.
As a result, numerous NGOs, consultancies and advocacy groups play an active part in supporting the government in promoting inclusivity, influencing policies and providing support and prevention where possible to the persons with disabilities.
Nepal as the state party of the Convention on the Rights of Persons with Disabilities (UNCRPD-2006) is obliged to gather comprehensive data and information of persons with disabilities (Article 31) to ensure that the services and facilities are provided according to their needs and based on priorities.
The state is also obliged, as per the constitution, to provide free health services, including medication, for persons having epilepsy and some other chronic diseases. However, so many people have little knowledge about the services or access to the granted facilities and services, consequently, resulting in the poor health condition of persons with disabilities.
Accessibility of data is a major tool in addressing the issues of persons with disabilities, such as policy formation and programme operation. The estimated number of people with disability in Nepal varies from one study to another. The National Census 2011 conducted by the government reports that 1.94 per cent of the total population of Nepal is living with some kind of disability whereas the National Living Standard Survey report (NLSS) 2011 puts it at 3.6 per cent.
However, both figures are quite low compared to the World Report on Disability (2011) by the WHO and World Bank, which shows a 15 per cent disability prevalence rate. Persons with disabilities are a stigma to the family and so are kept hidden.
Moreover, a large number of disabled persons have not received any kind of treatment. This could be due to lack of knowledge and awareness that impairment can be treated.
The WHO has highlighted prohibitive costs, lack of appropriate services, poorly skilled health workers, and physical barriers to access as major constraining factor that hinder a healthy life for disable persons. More data are needed to understand the health needs of persons with disabilities in order to bridge the healthcare gaps.
For the past 20 years Nepal has been very active in formulating policies to enhance the rights of persons with disabilities and improve their quality of life. There have been many positive developments following the signing of the CRPD by the government, disabled people’s association as well as by other national and international agencies.
Creating awareness about the rights of persons with disabilities (Act Relating to the Rights of Person with Disability 2017) by utilising all available means, mass and mediums of information, communication and education in a new federal Nepal is a must. Activities related to social, economic and medical rehabilitation are meant to enable persons with disabilities to lead a dignified life, as in the case of Dharma. Similarly collection, translation and development of legal instruments and advocacy materials play a vital role in raising awareness among the persons with disability at the grassroots level.
A version of this article appears in print on January 23, 2019 of The Himalayan Times.