[Excellent R&D] Giving Voice to Those With Developmental Disabilities
Professor Je Cheol-ung (School of Law)
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Many societies seek to create equal standing for all social groups, which also advances human societies toward democratic order. An important factor in societal evolution is hearing what people have to say, but there are those who are shunned to the outskirts of discussion as their voice is ignored or is transferred to their guardians, who are trusted to speak for those who have difficulties speaking or expressing their mind through gestures. Professor Je Cheol-ung (School of Law) has been fighting for people with developmental disabilities, which includes dementia, mental diseases and disorders, to make society listen to their voices instead of suppressing them in the name of protection.
“There are those who cannot speak well, but one can see dislike in their expression, which is an expression of refusal,” said Je. “In this way, even if one cannot express themselves through words, they show their intentions in different ways like emotion and feelings. We need to consider whether we are offering a correct service.” Korea has around 400,000 patients with developmental disabilities living in nursing facilities and mental hospitals, which isolates them from society. The lack of caregivers in Korea makes conditions in these facilities unfavorable as one caregiver would have to take care of an average of eight patients. They would often be neglected or even be tied up, literally, and laws do not do much to protect their rights. Elderly struggling from dementia are often swindled into handing over their money or investing in bad businesses.
Je’s research on “The Integration of Persons with Impairments for Decision Making Ability into the Communities” has been conducted since 2012, which is funded by the Ministry of Health and Welfare. Je said that the problem behind Korea’s policies for people with developmental disabilities is the low budget, and the public benefits offered are typical and not customized towards individual needs. Je’s team seeks to revise laws so that they can function better to protect the rights of the people with developmental disabilities. The first step in Je’s research is creating a theory on possible revisions. Then, Je’s team visits facilities to interview patients and those involved with their wellbeing and finds out if the theory can actually be implemented. One revision that Je said was a significant result of his research is revisions to the Civil Proceedings Act that allows for people with developmental disabilities to participate in lawsuits instead of being pushed to the sidelines. Je said there are many cases where people with developmental disabilities are excluded from lawsuits that they are involved in, instead replacing them with their legal guardians, or included them in the case without any actual participation.
What keeps people with developmental disabilities from other social groups is the fact that they are not part of the groups that seek to protect their rights, said Je. These groups are instead led by their legal guardians or lawyers. In order to make their voices heard, Je said that people with developmental disabilities whose conditions are less severe need to take a leading position in these groups and speak for those who are more restricted in expressing themselves. Je believes in de-institutionalization, taking people with developmental disabilities out of facilities and restoring them back in society. Je seeks to move this societal paradigm of substituted decision-making to supported decision-making, which will focus on the autonomous decision by patients instead of relying on the supporting roles of legal guardians.
“The definition of a good world is a place where the weak can live comfortably,” said Je. “True democracy is practiced only when the weak speak their minds, and society listens in return.”
Jung Myung-suk firstname.lastname@example.org
Photos by Kim Ju-eun
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