In Nepal, disabled people are an invisible underclass. They are regarded as helpless and incapable of caring for themselves, so most efforts to help them take the form of charitable handouts rather than any genuine attempt to help them survive on their own abilities. Forced to rely on the generosity of family, they become demoralized. Shudarson Subedi is working to enshrine disabled rights in law—and give disabled people the same chance at independence as any other Nepalese citizen.
The New Idea
Shudarson is creating a legal framework to guarantee disability rights while using the media to draw attention to the fact that, given the same opportunities as able people, the disabled can be productive and self-sufficient members of society. He advocates for changes through all avenues: through court cases fighting for disabled rights, through petitions to government offices, and through grassroots demonstrations via community organizations and self-help groups.
Although Nepal became a democracy in 1990, the old ways of thinking die hard. The country is still struggling to provide effective public services; traditionally, Nepal has never invested much in health care, sanitation programs, or education, and many high-ranking officials still don’t understand the need for these services. No one feels this lack more than the disabled.
Five percent to 10 percent of the population is believed to be living with some disability. These people face a host of obstacles: they are denied education and employment, and the government’s reluctance to provide any sort of accommodations deprives them of the chance to engage in public life, (The specialized facilities that disabled people in other countries sometimes take for granted, like wheelchair-accessible public transportation or restrooms, do not exist in Nepal). Without these small but vital accommodations, disabled people cannot help themselves. For example, even the most qualified applicant for a job will not be hired if he has a disability that makes it difficult for him to climb the stairs to enter the building.
At the moment, many Nepalese do not see this as a problem, because they do not think of disabled people as a group that can or would want to be self-sufficient. As such, they expect disabled people to be entirely dependent on charity, an approach that ultimately ends up isolating the disabled and making many feel like a worthless drain on society. The biggest stumbling block to the integration of the disabled into Nepalese society is one of attitude: people here have long held the belief that disability is a personal problem, one that only concerns the disabled person her/himself and her/his immediate family, rather than something that the entire state should think about.
There are some laws on the books which guarantee civil rights for all people, but the disabled have little experience in demanding that these laws be enforced. As such, it’s easy for both government agencies and private employers to ignore the law, since changing to accommodate the disabled would be a hassle and they can be reasonably confident that no disabled person will have the time, energy or ‘know-how’ to challenge the status quo. As such, people with disabilities are routinely denied health care, education, and employment.
The few organizations dedicated to disabilities that do exist each narrowly focus on only one particular type of disability. There is little communication between the groups and no effective way for them to organize and demand any influence in national policy.
Shudarson lives every day with his own disability. To him, the existence of favorable but unenforced laws is not enough; he wants to show that, if these laws were enforced to give disabled people their due rights, they could easily become productive members of society. Shudarson fights to enforce disabled people’s legal rights through the legal and legislative systems, but he also knows that to see real change, the general populace must come to accept that disabled people are equal. To this end, he is heavily involved in community events to bring together disabled and non-disabled people for social activities that help both groups understand one another.
Shudarson founded Nepal Disabled Human Rights Center (DHRC-Nepal) in 2000 to pressure the government to enforce existing laws related to the disabled. His precedent gives disabled people the courage to fight for their rights to inclusive education, access to health care, and fair and equal employment opportunities. In one exciting victory, he fought all the way to the Supreme Court to guarantee free and equal education for the disabled.
At the same time, Shudarson has made a concerted effort to draw attention to this victory through the media, so that all disabled people can take advantage of this right. More than 2000 disabled students from all over Nepal who had previously been denied acceptance in schools have received free education after the Court ruling. He also sent letters to the national Education Ministry, who then circulated them to the district and regional education officers, putting everyone on notice that disabled people were not to be denied their right to education. In the future, Shudarson plans to use the legal system to ensure that various other rights are enforced.
Shudarson knows that disseminating information is the best way to ensure that rights are enforced; too many disabled people don’t realize that they are legally entitled to have access to equal education and employment opportunities despite their disabilities, and too many government officials and employers don’t realize that they have a legal obligation to accommodate disabled people. Shudarson initiated a weekly radio program in 2002, broadcasting stories produced by disabled journalists on topics of interest to disabled listeners. Listeners are encouraged to form “Radio listener clubs,” which serve as citizen watchdog groups for disabled rights. There are now more than 170 self-motivated radio listeners clubs throughout Nepal.
Shudarson has also founded the monthly journal, Disability Voice dedicated to the concerns, issues and rights of disabled people. Disability Voice is distributed throughout 40 districts of Nepal. The journal works to change Nepalese society’s negative attitude toward disability by showcasing exemplary people with disabilities. The journal has also inspired other disabled organizations to start journals, which inspire disabled readers with stories of adversity to overcome them. In doing so, it has created reporting and writing jobs for disabled journalists.
Shudarson supports local cross-disability networks and self-help groups, which help disabled individuals and their families integrate into the wider community. Getting families involved is an important part of the process, as they provide vital moral support that encourages disabled people to actively change their own lives. Getting them to understand why their disabled relatives want to participate in Nepalese society to the full extent possible—rather than languishing away as shut-ins, entirely dependant on family goodwill to survive—is the first step toward changing the way society views and treats disabilities.
He has built a Resource and Learning Center to train people in the areas to work for the disabled community—areas like journalism and law. The center provides the necessary resources for disabled people who want to have their rights enforced. Among the services offered, DHRC-Nepal publishes legal aid manuals, compiles state laws and policies for people with disabilities, and provides free consultations with specialized staff trained on the subtle nuances of disability and civil rights law.
Finally, Shudarson has initiated an umbrella ‘Rights-Based Advocacy Network, Forum for the Rights of People with Disability, bringing together over 60 national and community based and advocacy organizations. Right now, he is in the process of meeting with the Association of International NGOs (AIN), negotiating to make disability a priority issue for inclusion into their social reform programs.
Shudarson believes his own disability was caused by a case of polio he contracted as a child. Ridiculed by his schoolmates, he preferred to avoid social situations and instead concentrated full time on his education, attending a school begun by his father. Shudarson’s father was a village clergyman always concerned with social justice, and Shudarson has inherited this trait.
As an adult, Shudarson was inspired by the good work he saw done by local members of the Red Cross and Reuikai. Shudarson saw that, in isolated villages, disabled people such as he were rarely able to work at the same level as their able-bodied counterparts. Nevertheless, he was determined to try. Although he had spent many years avoiding people out of embarrassment over his disability, he soon found that working for himself brought many benefits: he was earning money to help his low-income family, he was learning new skills, and he was coming to know and understand his own community, the same community from which he had previously tried to distance himself.
With the newfound knowledge that true freedom came from helping himself, he set out to help other disabled people to get on their own feet. While traveling to other remote locations around the country, he realized that not all disabled people were as easily able to engage in public life as he was: Even if they had the courage and nerve to stand up for themselves, they still faced constant discrimination from a population that regarded them as worthless. Sudarson set himself to finding a way to change this attitude.
Sudarson chose to study law, thinking that through the law he would better be able to advocate for disabled rights. His thesis for his law degree reflected his commitment to this issue: “Legal provision for disabled people.” His thesis has since been published and distributed to libraries across the country as a reference for basic information on legal issues for the disabled.
One of the very few physically challenged people in Nepal to graduate with a higher degree, Shudarson has demonstrated that disabled people need not depend on outside help but can in fact be the leaders for their own cause.