Written by Kuo-yu Wang.
Image Credit: Public Domain
Although Taiwan is no longer a UN member since the year 2000, the government has ratified at least five human-rights-related conventions through legislation. One of these five conventions is the Convention on the Rights of Persons with Disabilities (CRPD). Ratified by the Taiwan Legislative Yuan in 2014, the CRPD begin to implement in Taiwan. It will replace the current Rights Protection Act of People with Disabilities, which has been in place for 40 years and has established various systems for people with disabilities in Taiwan.
The transformation from the current system to the CRPD is a challenge for Taiwan. Article 19 will be the most interesting challenge. Article 19 in the CRPD states that people with disabilities have the same rights as others to live independently and be included in the community. This implies that people with disabilities should have equal rights to access community services, and all service systems should include people with disabilities. Among all these three principles listed in article 19, living independently and being included in society are important concepts and policy direction set up by convention. However, the first challenge is to clarify what independent living (IL) means for different generations of people with disabilities. Second, to determine how IL services are to be implemented in Taiwan. Finally, we need to decide what independent living means for people with different disabilities and how to think about using the term “interdependent” rather than “independent.”
I was born in the 1950s in Taiwan. I contracted polio when I was only 11 months old. My parents expected me to be financially independent, live independently in my own dwelling, and have a good career. To help me achieve these goals, they felt their duty was to provide me as good an education as possible and offer me all the support they could concerning needs such as transportation to and from school and a monthly allowance. Back then, it was the responsibility of a family having a child with disabilities to fulfil these duties, no matter how hard it was. My mother, especially, raised me to be as independent as possible. I was always taught to be grateful to people who helped me no matter how modest the help, wear a leg brace to walk without assistance from another person, and generally do everything myself as much as possible. For my generation of people with disabilities, the family was always the major source of support. Back then, there was no service system in society to support our need to live independently. The family bore the major responsibility to provide care daily, provide financial support, and pay transportation costs. It never occurred to my parents that this burden should be shifted to society or the government; it should simply stay within the family. Overall, my generation of people with disabilities pursued our independence through education, work, taking care of ourselves, and living in the same community as our family, neighbours, and friends. For us, independent living meant to build the capacity for self-reliance, financial independence, and self-care.
However, since the late 1980s, along with the development of democracy, the government has expanded and established a social service system to provide people with disabilities with various kinds of assistance. This assistance has included cash allowances, tax reductions or exemptions, daycare, workshops, transportation, and health services. Therefore, compared to my generation, nowadays, people with disabilities in Taiwan have some albeit limited choices and services to draw upon when they need support. Neither the concept nor the actual provision of IL services for people with disabilities existed until the beginning of 2000 when a girl with disabilities introduced to Taiwan the service system of independent living that already existed in Japan. Since then, IL has become one of the support services to people with disabilities in Taiwan. The ratification of the CRPD by the Taiwan Legislative Yuan in 2014 made article 19 of the convention legitimate through the further provision of additional IL services. People with disabilities in all generations will be able to apply for resources such as a personal assistant, daycare, transportation assistance, and various financial or in-kind services to construct their own service package based on whether they meet each service’s requirements. Taiwan IL specifies two major categories: personal assistants and peer support. Each will have its requirements and application procedures.
According to the CRPD, it is a right for people with disabilities to live independently and be included in the community. Thus the state bears the major responsibility to guarantee this right. On the other hand, the number of people with disabilities who have applied for IL services in Taiwan is very small, less than 1% of people with disabilities in Taiwan. Thus, we face an interesting reality: independent living is an important right of people with disabilities listed in CRPD, but in Taiwan, people with disabilities seem not to be interested in this right.
This issue has not been examined in depth yet. There have been some explanations of service design and delivery, but the analysis of services per se is insufficient to see the underlying social dynamics. For an author to understand the causes of the living arrangements of people with disabilities in Taiwan, they must understand the attitudes of both the family and society toward people with disabilities. The major fact to note regarding people with disabilities in Taiwan is that they live with their families rather than institutions. In most Western countries, the major historical event influencing the lives of people with disabilities was the introduction of deinstitutionalisation in the 1960s, a policy that continues to this day. It has allowed many people with disabilities to regain control of their daily life decisions and incentivised them to pursue independent living and make personal choices in their daily lives. In addition to being a consequence of deinstitutionalisation, independent living is an individual right and goal in most Western countries. Nevertheless, for people with disabilities who live at home with their parents in Taiwan, independent living means moving out of the family home and living alone without their parents’ care or help. Thus, the IL services for the older generation of people with disabilities in Taiwan may not meet their residential needs. For the new generation of people with disabilities, independent living requires a very skilled professional worker to help them organise all the available resources to fulfil their needs.
Furthermore, a major need for independent living in Taiwan are the services of peer supporters. These are people with disabilities who have experienced independent living themselves. However, in some rural areas of Taiwan, the resources for people with disabilities, including a sufficient number of peer supporters qualified to provide the services, is limited. All these problems combined make independent living a constant struggle. Secondary matters become difficult, such as how many hours of PI is enough, how to get care during weekends, who should be paid for additional services during weekends and holidays, and, finally, how much people with disabilities should be willing to pay for IL services.
The most important questions to be answered are the following. Is independent living actually suitable for Taiwan? Moreover, does independent living mean that the state rather than the family should bear the burden of providing care? If independent living is a right of people with disabilities, should it be satisfied through a generally designed service system or a totally customised system with an individual framework? Should there be a limit to the rights fully provided by the state? For me, these are really hard questions that all of us must answer: people with disabilities, the state, the service providers, and the advocacy groups. Independent living as a right of people with disabilities does not necessarily mean that all people with disabilities throughout the world must have this rightfully.
Furthermore, if IL services are the mechanism for fulfilling this right, they should be flexible and maximise freedom of choice for people with disabilities. To be an independent person with disabilities does not necessarily mean reliance on public services; it really depends on how we see ourselves. According to the CRPD, IL services are a major right of people with disabilities, which implies that this right is universally suitable for all people with disabilities, with no need to consider other social factors. However, recognising the need of some people with disabilities to be dependent on others, such as parents, friends, co-workers, or neighbours, is perhaps more acceptable than insisting that everyone live independently. In fact, no one is fully independent throughout life; all of us sometimes need to depend on others to take care of our needs. Thus, article 19 of the CRPD illustrates a challenge to countries that place a stronger value on family than individual rights. These countries need to take a different approach to satisfy the rights of people with disabilities. The case of Taiwan implementing article 19 of the CRPD indicates that a human-rights approach to disabilities needs to consider the social dimension of individual rights.
Kuo-yu Wang is an adjunct professor in Department of Medical Sociology and Social Work at Kao-hsiung Medical University.
This article was published as part of a special issue on Disabilities and Society.