Disability and Deinstitutionalization: Why Must the Disabled be Locked Up in Institutions?
Cha Hanseon (Policy Team)
I am a disabled woman with cerebral palsy. My disability is not serious, and so I spent my childhood and my college years with abled people and now live in a place that I choose, without being institutionalized. If human beings have the right to live where they want, the way they want, then having physical and mental disabilities shouldn’t condemn anyone to live isolated from local communities, with no control, and with their individual needs subordinated to collective and institutional ones.
Indeed, most countries started with institutionalization-centered policies towards those disabled and unable to perform labor. In the United States, this approach reached its zenith in the 1970s, where 2,800 people were institutionalized in facilities designed for 700. This policy of mass institutionalization changed with the US Supreme Court’s Pennhurst Case (1978). Concluding that large scale institutions like Pennhurst, separated from the local community and with unequal conditions, did not improve the quality of life of their residents, the Supreme Court ruled that state governments must find alternative suitable living arrangements for the residents. Subsequently, the Olmstead Case (1999) also ruled that, when appropriate, community based care, rather than institutional care, must be provided to the mentally disabled. After these cases, the United States shifted its disability policies towards community-based ones that did not isolate the disabled.
In Britain, the government gradually changed from control over social services to ensuring self-sufficiency and self-determination. The Community Care Act of 1990 began the process, and the Care Act of 2004 mandated local governments to form care and support plans for the disabled and provide personal funds. In Canada, the Social Integration Act encourages the disabled to integrate into local communities by focusing on providing direct payments of costs and local services. In Australia, the government is proceeding with detailed plans for integrating the disabled, along with local social services. In Sweden, laws are dismantling all care institutions over time. The Disabled Support and Services Act of 1993 mandated that the state must provide support to allow disabled people to live on their own in their communities. In 1997, another law was passed to close remaining hospitals and institutions for the disabled. As can be seen, other countries are struggling to develop deinstitutionalization and social integration policies appropriate to their local conditions.
However, in Korea, more than 30,000 disabled people are in institutions, living in strict collective discipline and unequal power relations, losing agency and dignity. The disabled that have been institutionalized had their agency taken from them, forced into a collective life of conformity, isolated from their own communities and exposed to human rights violations. Once committed to an institution, it is very difficult to deinstitutionalize and reintegrate into the local community due to the lack of social and economic support. The institutionalized life, utterly isolated from normality, is only a continuum of despair that allows neither desires nor hope. It is a sad reality of our society that 80% of the institutionalized disabled have been committed without their consent.
Translator’s note: This graph is titled “State of Living Facilities for the Disabled.” The orange bars represent the number of facilities; the yellow curve, the number of those institutionalized. The left y-axis corresponds to the number of facilities; the right y-axis, to the number of the institutionalized
South Korea has earned the infamous moniker of an “institutionalized society” because of its isolation of the disabled, the elderly, and orphans. While the United States and Europe have been replacing institutional care with deinstitutionalization policies since the 1970s, Korea has gone the opposite way, increasing and expanding institutions. Residential complexes for the disabled and facilities for the mentally disabled are commonly found tucked away in the outskirts of population centers. We must raise the question: “Why are those institutions there?” It is to place the disabled out of sight.
However, those that have been placed out of sight are now entering society. Recently, we can see many disabled people in wheelchairs in the subway. Many of those people had been locked away in institutions in the past. How could they re-integrate into the local community? The answer is deinstitutionalization.
Deinstitutionalization allows the disabled to leave the confines of institutions and live with agency and self-reliance within the local community. As such, it is “the prerequisite for the disabled to live dignified lives in the local community, and it is a restoration of their citizenship” (Kim, 2011).
The institutionalized disabled cry “we don’t know what we are living for”.
The deinstitutionalized disabled that have achieved self-reliant lives often say that they want to be the “proof for hope”. In this context, the policy of institutional care, which categorizes a group of people, then isolates them must be critically reconsidered.
Image Description: Solidarity Against the Discrimination of the Disabled conducts a sit-in, calling for legislation of deinstitutionalization for the disabled.
We must now follow the steps of many other countries and develop a model that focuses on the self-reliance and agency of the disabled themselves, which allows them to live embedded in local communities. Personalized home care services must be expanded and large-scale care institutions must be downsized. This requires the political will of the government. Since deinstitutionalization is one of its policy goals, the government must take an active role in implementing the UN recommendation on deinstitutionalization, as was the case in Croatia.
Fundamentally, deinstitutionalization does not mean a simple physical relocation but a redirection in policy. The policy centered on institutions must be replaced with a system of community-based care. Everyone must be able to decide for themselves their way of life and how they make use of services. The legal and social systems must ensure that they can live stable and sustainable lives in the community. This is the crux of deinstitutionalization and the life that comes after it. Deinstitutionalization is a central step to changing our way of dealing with the vulnerable, from a focus on efficiency to one focused on value. We must live together, in arm’s reach and in sight.
Deinstitutionalization is not simply a matter of physical space that calls for the dismantling of large-scale care institutions. The institutionalized disabled must return to their families, and to society at large. The reality is that many deinstitutionalized disabled rely on the support of their families. However, care from their families is not enough, and society and the state must take responsibility. If the government simply postpones this process as it readies itself, then the process will never begin. The government must recognize deinstitutionalization as a responsibility and then actively begin its implementation.
There can be no dignity for anyone, without dignity for the disabled.
References
What Do You Know of Disability, Kim Do Yeon
No Pity, Joseph Shapiro [2010]
The Disabled’s Right To Deinstitutionalization, Kim Myeong Yeon [2011]
Dignified Life and Deinstitutionalization, Kim Myeong Yeon [2016]
The Outlook for Deinstitutionalization in Korea, Park Sook Kyong [2016]
Seoul City Research on Implementing Deinstitutionalization [2020]
Legislative Debate on Deinstitutionalization - Concepts and Contentions [2020]
A Disability History of the United States [2020]
Annual Healthcare Statistics [2020]