Multidisciplinary Research on the Disability Rights

— The More the Better

ZHANG Wanhong* & GAO Wei**
 

Abstract: Studies on the rights of persons with disabilities are typical of multidisciplinary research. In recent years, following the adoption of the Convention on the Rights of Persons with Disabilities in particular, studies of the rights of the disabled have presented the following trends and features: diverse research angles, the expanding of the depth and width of research; a focus on personal experience and cultural interpretation; a concern for the impacts of multiple identities on the realization of individual rights; and a stress on empirical, participatory and emancipatory research. Multidisciplinary disability right research is now at a preliminary stage and it is worth further development so as to promote the disability cause in China.

Keywords: disability rights ♦ human rights ♦ multidisciplinary

Before the 19th century, the disabled were considered to be a group of people with various physical or mental injuries.¹ Different from the past when disabled people were looked at from a medical perspective, disability studies look at the issue of people with disabilities from social, political and cultural perspectives.² Scholars have begun to discuss concepts such as autonomy, independence, competence and community in relation to persons with disabilities creating space for research into equal rights for those with disabilities.³ Because disability issues cover multiple areas, multidisciplinary research has become the norm for disability studies. By the end of 20th century, disability studies had grown into a typical interdisciplinary human rights research field, focusing on history, literature, law, social policy, politics, architecture and other subjects from the perspective of disability-related issues. As research on disability issues has become more mature, independent and multidisciplinary, it has further promoted research on the rights of persons with disabilities. This article is divided into three parts, the first part discusses the paradigm shift to multidisciplinary research, the second part summarizes the characteristics of disability rights internationally, and the third part focuses on the study of challenges and prospects of disability rights in China.

Ⅰ. The Studies on Disability Rights with Multidisciplinary Perspective

There is no precise definition of "multidisciplinary research" in academia, in practice there are other names for it, such as interdisciplinary and cross-disciplinary. The difficulty in defining the concept is that the "subject" itself is constructed, not an objective fact. Construction of a discipline is often based on a series of assumptions, principles, and methods, while the research methods used in different disciplines often overlap. For example, sociological and anthropological studies have different goals, but in practice they may use the same methods, such as surveys, interviews, etc. Besides, with the development of society, new disciplines have appeared, such as gender studies. Gender studies are not necessarily mutually exclusive with other disciplines, and indeed are often combine with other disciplines to form new sub-disciplines, for instance feminist geography.

Some scholars have tried to outline the differences between "multidisciplinary", "cross-disciplinary" and "interdisciplinary". They believe that "multidisciplinary" is a type of superposition in which researchers with different disciplinary backgrounds undertake a separate study on the same issue, for instance, a scholar of architecture and a history scholar respectively study a Renaissance painting. "Cross-disciplinary" is the integration of two different disciplines of knowledge that results in a new discipline or field, biophysics, for example. Interdisciplinary is above the subject, problem-oriented, with a holistic approach that scholars with different disciplines give full play to in their cooperation, such as the study teams on environmental pollution or starvation.⁴

For the sake of this paper, "multidisciplinary" will be used in a broad sense, including not only the subject of the theory assumed, but also its research methods, such as surveys, interviews, national records, and literature analysis. Breaking the rigid boundaries between disciplines, so as to go beyond the traditional normative research, allows various concepts and techniques to be applied to the study of disability and rights of persons with disabilities and finally develop empirical research on the basis of evidence-based study.

Multidisciplinary research that apply the theories and methods from different disciplines offers unique advantages and has great potential for research to improve national human rights policy. Multidisciplinary research aims to break down disciplinary barriers, to apply the theories and methods from different disciplines on one subject. It is easy to undertake comprehensive and complex research assignments when experts with different backgrounds work together and complement one another. Multidisciplinary group work is an effective complement to the knowledge limitations of a scholar's individual research, which is far beyond the simple superposition of a scholar's individual intelligence and creativity.

The complexity of the issues related to disability and the rights of persons with disabilities makes them well suited to multidisciplinary research. Disability includes both physical and psychological injury to persons and the effect of the physical environment and social attitudes. In reality, there are different forms and personal experiences
that should be examined in historical, economic, social, cultural and other perspectives. As Dan Goodley, a professor at the University of Sheffield in the United Kingdom has said, disability research should change the paradigm, break the traditional division of subjects, and challenge the existing theories.⁵ An integrated research approach to this issue is of great significance.

After the 2008 United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities, the rights of people with disabilities began to draw a greater attention. At present, the international academic research on the rights of persons with disabilities includes disciplines such as sociology, anthropology, literature, and feminism, etc. And in addition to books, there are several journals that specifically focus on multidisciplinary research in the field of disabilities, such as Disability and Society, the Disability Studies Quarterly, the International Journal of Disability, Development, and Education, the Journal of Disability Policy Studies, the Journal of Literary and Cultural Disability Studies, the Research in Social Science and Disability, and so on.

Research into the rights of people with disabilities is, in a broad sense, part of studies into disability issues, but it is not easy to distinguish studies into the rights of people with disabilities from studies into disability issues. Some articles explicitly discuss the rights of disabled people, or use the framework of rights, while there are articles which do not directly focus on their rights, but adopt a perspective based on the basic principles of human rights, such as non-discrimination, participation and empowerment. Their aim is to promote the equal participation and integration into the society of people with disabilities. In this paper, the above two categories will be considered to be research on disability rights. But it needs to be noted that although some articles proclaim to be research on rights, they display superiority to disability groups, believing that disability groups are "being granted rights". Research on rights and human rights (law) contain the choice of value, the researchers' stance will obviously influence their findings.

The basis and the starting point for research into the rights of people with disabilities is the UN Convention on the Rights of Persons with Disabilities. The Convention is the first international convention on the rights of people with disabilities, and is known as the most advanced international human rights convention to date. It is of epoch-making significance that the Convention provides a model that shifts from "individual" to "social". Fundamental principles and concepts enshrined in the Convention include many aspects, such as respect for individual autonomy and diversity, full participation and integration into society, accessibility and reasonable convenience, recognition of subjective identity of the disabled and the right holders, which has very high value for the protection of the rights of the disabled in China, and even of the rights of other groups.

The Chinese government has been actively committed to the protection of the rights of people with disabilities. In 2008, China revised the Law of the People's Republic of China on the Protection of the Disabled, and acceded to the UN Convention on the Rights of Persons with Disabilities, then actively passed a series of laws and regulations to protect the rights of people with disabilities, such as the Ordinance of Constructing Barrier-free Environment and the Mental Health Act. With the encouragement of the Chinese government and the China Disabled Persons' Federation (CDPF), China has not only seen rapid development in practice in the field of disability, but come to a new stage of development in its research. However, in China, the research on disabilities and the rights of persons with disabilities is still at an initial stage and is limited in quantity and extent. Searching the China National Knowledge Infrastructure (CNKI) full-text periodical database with the phrases "physical disabilities (people)" and the "disabled (people)", shows there are a considerable number of articles classified as traditional pathology, like medical science, rehabilitation and special education. And some are on disability's social security system, job placement, accessibility and assistive technology. But it seems the research basically regards disabled people as beneficiaries of charity, the subjectivity of the disabled is insufficient. Thus it is urgent to discuss disability issues, on the basis of the Convention on the Rights of Persons with Disabilities from the perspective of rights (rather than pathology or a philanthropic perspective), and so examine the interaction between persons with disabilities and society from a new perspective, and to reflect on their social construction, identity, and power. At the same time, from the point of view of the legal capacity of persons with disabilities, reiterating the human subjectivity of the disabled, and reflecting on the development of the traditional knowledge, including medical science.

Ⅱ. Characteristics of Multidisciplinary Research on the Rights for the Disabled

Generally, the current international research into the rights of persons with disabilities has the following features: (1) a diverse research angle, with the depth and extent of the research constantly expanding; (2) from abstract theory and normative research to specific and empirical research; (3) on the basis of "facts", emphasis is placed on the experience and the interpretation of the "person" in relation to society and culture; (4) concern about the intersections personal identity/identities and individual rights; (5) persons with disabilities being at the centre of research, being both the objects of research and participants in the research, paying attention to the empowerment of participants and emancipation of subjects.

A. Diversity of disability rights research

Apart from the law, at present, research into the rights of people with disabilities involves sociology, anthropology, political science, psychology, economics, language, literature, gender studies and other social sciences and humanities disciplines (here does not include such disciplines as medicine, rehabilitation, etc.).

There are two dimensions to studies on rights of persons with disabilities that are based on the characteristics of different disciplines. One is tends to "objective"description and analysis of the facts, trying to clarify some kind of social phenomenon and present a variety of influences, as well as the relationship between the various factors. These studies use quantitative methods, focusing on the statistical analysis of the data. In the study of rights, this approach can help analyse the internal and external factors influencing the protection and realization of rights, or the effect of certain laws or measures aimed at the protection of specific rights. The United States, for example, has a lot of research on the implementation effects of the Americans with Disabilities Act (ADA). The research based on the data analysis over certain timeframes, found that after the ADA came into effect, the rate of employment for persons with disabilities has not increased, rather it has decreased^.6 Other research has shown that to assess the situation employment of disabled persons, a number of factors need to be taken into account, such as which persons were included under the ADA and the government subsidies provided the disabled (disability benefits) that to some extent reduces the willingness of the disabled to get a job. Studies have shown that different measurement criteria lead to different conclusions.⁷

In addition to sociological statistics, economic theories are also used to study the realization of the right to employment of the disabled. According to the theory of rational choice, people's economic behaviour comes from their weighing up and balancing costs, benefits and risks. Under this theory, people with disabilities, in deciding whether to apply for disability benefits, will judge which has the lowest cost with the highest profit — apply for disability insurance benefits or get a job? As for the risk, the disabled also need to assess the risk of failure in applying for disability insurance benefits, if their application is unlikely to succeed, he or she may choose to look for a job.⁸

The second dimension of research on disability rights is "interpretive". Differentfrom the first dimension, interpretive research pays more attention to how people interpret particular social phenomenon in specific social and cultural contexts. The understanding of certain phenomena and concepts are often constructed in a specific culture; in turn, this understanding will influence people's attitudes and behaviour, thus strengthening the cultural constructs. Therefore, once the discrimination against a certain group emerges, it becomes rooted in people's minds; as a result the social policy toward the group concerned will be filled with prejudice. Doing research interpretively can inspire people to think about the deeper reasons behind daily phenomena and pinpoint the problems that need to be solved. Such studies are usually qualitative, using on-spot investigations of in-depth interviews and observation to search for new findings. The greatest contributions that anthropology has made to disability rights are Cultural Anthropology and Medical Anthropology. It is widely acknowledged that there exists certain physical and mental disabilities, but different cultures and communities will have different reactions to these traits. Anthropology's contribution has been to explore this issue as social and cultural experiences. For example, an anthropologist found in a place where the number of people had hearing impairment was extremely high, being deaf is not. All things considered, because everyone there can use sign language. In such a society, the universally applicable disability definition does not apply. Still, such words as "deviance", "stigma" and "otherness" from anthropology can be used for research on disability rights. Because the disabled deviate from the mainstream, the resulting stigma means they are seen as others, and in reality are marginalized.⁹ In the study of anthropology, such examples abound.

In addition to the more mainstream subjects, there are also subjects such as music and geography and the disabled, which from a fresh point, inspired people to reconsider the relationship between people with disabilities and society.¹⁰

B. Impirical research, well-founded

In addition to the integrated use of various disciplines and theories, research into the rights of people with disabilities focuses on its empirical nature. Empirical research on the rights of people with disabilities greatly strengthens the persuasive power of the argument, and will have a positive impact on decision-makers and policies. For example, as to the opinion that the working performance of the disabled is not as good as that of the able-bodied, scholars have made an empirical research — designing a model and index for measuring work performance — which obtained the results that except for time of service, other indices such as attendance, productivity, and task management showed there was no significant difference.¹¹

In the first phase of a project "the Multidisciplinary Research on Disability Rights, China" presided over by the author, there was an anthropology researcher who studies female patients in psychiatric hospitals with unstructured interviews, to understand the essence of their rights and the influencing factors. She used a large number of cases and the verbal accounts of respondents, and points out, "hospitalized women, who were sent to the hospital the family members in the name of love and protection, tend to experience medical monitoring, and constraints on their behaviour, especially when family disputes occur or when a woman has very low status in the family. The deprivation of the freedom, marriage rights and health rights of hospitalized females is the result of coming together of family and psychiatry."¹²

Literature analysis is itself empirical research. Taiwan scholar Zhang Henghao and Su Fengshan conducted research into post-war (1952-2003) primary school textbooks in Taiwan about the disabled, including the quantity of the physically and mentally disabled, types and methods of interpretation. The conclusions are as follows: "1) The amount of the physically and mentally handicapped in textbooks was very small. Of those portrayed the disability was physical rather than a mental disorder; (2) The words of naming changed from ‘the crippled’ to '(physical and mental) disabled person'; (3) There were only two types of images in the text — those who described either as people in need of help, or inspirational person that can encourage others; (4) 'Disabled' was defined as personal problem, ignoring the social factors; (5) They lacked the voice and worldview of the physically and mentally disabled, and had no discussions of heterogeneity and the multiple culture views. " ¹³

C. Personal experiences and cultural interpretations

As mentioned earlier, hermeneutical studies reflect socio-cultural mainstream attitudes and how they suppress the weak. Past research, and many present studies in China, have tended to focus on macro-social structures, in which the individual does not a position, and this makes the right studies cold, unable to influence policymakers and the public. Therefore, we need more vivid and substantial study, that is, to have the real "person" there. Some foreign scholars study how the disabled achieve the acquisition of “non-disabled culture” and response as the non-handicapped people expected. Researchers display the "non-disabled culture" with a series of dialog, for example,

"I don't see you a handicapped at all."

"At least he's not so handicapped."

"You're so brave, I do not know what you are facing."

...

These words are very common, and as such it would appear that there seems to be no problem, but researchers are trying to prove that it is in fact "non-disabled culture" thought, with the stigma of disability still implicit. People with disabilities are forced to accept this kind of culture and the cultural expectations, exhibiting the look of someone who is poor unfortunate look or appreciate another's charity. This concept makes it impossible for people with disabilities to participate in social life on an equal basis, which is a breach of human rights.¹⁴

Discourse analysis is also a very important method of research applied in deconstructing the discourse, thought and practice of power relations, which often determine the distribution of rights and their degree of implementation. According to Foucault's theory, power is not only at the macro-level, but everywhere, and continues to strengthen through discourse. Some scholars, through empirical research, point out that there are power relations between the scholars and persons with disabilities, which causes prejudice — if the scholars and the disabled, in particular the mentally disabled, are inconsistent in expressions, the disabled are often doubted. This research, through detailed observation and analysis of conversations with people with mental health issues, stated that the reason why people with mental health issues gave conflicting answers was the design of the questions dawn up by the professionals. Professionals have preconceived assumptions about people with disabilities, and in practice, through technology (with awareness or not) and the power, to make their own assumptions confirmed, which itself is the prior denial of human dignity.¹⁵

D. Multiple identities and the realization of rights

Each individual may have multiple identities, a person with disabilities may also be a woman, a black, and elderly ... These together will have a different impact on the realization of individual rights. At present research into disability issues and the rights of people with disabilities is focused on multiple identities, which is also receiving more and more attention in China.

The most mature research on disability rights are studies on gender and disability. Empirical studies have shown that women with disabilities often suffer double discrimination in a society, making their situation even more difficult.¹⁶ The common point of these two identities is that the objects of study are stigmatized and suppressed groups; women's rights in many contexts are believed to be incomplete and deficient relative to the rights of men. So in reality, in some cases, feminist groups and disability groups will join hands to push for action. But they also have differences on some issues, for example, when it comes to the argument that women are incomplete like the disabled, this stigmatizes the disabled. Another example is those disability rights advocates who think that, regardless of whether a foetus has defects, it has the right to be born, while feminists claim that the mother has the absolute right to decide whether to have an abortion or not.

E. Research of participation and liberation

People with disabilities have made the declaration on their rights "nothing about us without us". Currently, in academia, the role of people with disabilities in research is also a hot issue. That is, people with disabilities should not only be regarded as the objects of research, but also the ones conducting the research. In addition, as to the purpose of the research, many scholars are no more content to simply expose the findings than better reflect on how to put the research into action, so to promote social change through granting rights to the disabled. Not only that, but many non-governmental groups have also begun to actively participate in the research. Some studies are even being conducted on non-handicapped disability, these show that with the development of the disability rights movement, the influence of the disabled community is growing.¹⁷ In the process of doing research on human rights, we should not ignore the voice and force of the communities to really achieve the purpose of the research.

Ⅲ. Multidisciplinary Research on the Rights for the Disabled in China

The rights of people with disabilities have become a global issue, and important areas of research and practice of human rights in China as well. According to the data of the World Health Organization, there are about 650 million people with disabilities in the world, 10 percent of the world's population, representing the world's largest minority. ¹⁸ According to China's 2010 statistics, there are around 85 million persons with disability in China. Because of social prejudice, discrimination and lack of support, the outlook for persons with disabilities is not very optimistic. But China is becoming more and more open about disability issues, and actively participates in international exchanges and dialogues. Since 2011, the China Human Rights Development Report (the Blue Book of Human Rights) issued jointly by the China Society for Human Rights Studies and the Social Science Documentation Publishing House, has had chapters in successive years discussing rights of people with disabilities in China.

To promote empirical research into the rights of people with disabilities, the Legal Research Centre on Welfare and Development of Wuhan University launched a "multidisciplinary research project in 2012. The project has recruited more than 50 researchers from universities, government and disability organizations. The researcher's backgrounds are varied, including law, sociology, anthropology, journalism, political science, literature, etc. The project has organized training and conferences on research methods for studying the rights of people with disabilities and interdisciplinary to enhance the research capacities of the participants. In support of the project, researchers in the framework of the Convention on the Rights of Persons with Disabilities, alone or in cooperation with other researchers conducting research, produced a series of great academic achievements, including the right to education of persons with disabilities and the right to work, mental disability rights, gender and disability, and many other studies. The Disability Rights Study compiled from the project results is the first academic collection with a clear perspective on the rights of people with disabilities, which is of epoch-making significance. I participated in and coordinated the project, during which I found the following:

First, the small quantities of qualitative and interpretative research. The above has already explained the importance and value of the research, but the problems in current research may be caused by two reasons. On the one hand, domestic researchers still pay more attention to "objective" and "reproducible" study findings that limit them to a certain extent to more critical, suggestive interpretation of research. On the other hand, some project participants report that it is relatively easier to do quantitative research while qualitative research takes a longer time, which is likely to be caused by academic training. But if we accept the importance of the “person” in research, then we should strengthen qualitative research in the future.

Second, the cooperation among the researchers from different areas and backgrounds also needs to be strengthened. In our project, there are some successful examples of cooperation. For example, a university law scholar and a member of staff from a civil organization with an economics background cooperated to conduct empirical research on public sector enrolment of disabled employees, which included rigorous legal analysis, published job applications from civil organizations government information, and also the personnel interview made by the organization on disability groups and public sectors; the research pointed out the challenge that happened during enrolment of the disabled people in the public sector, and proposed targeted policy.¹⁹ There is also an example of two participants with legal backgrounds who cooperated on a study to support decision-making for people with mental health problems. Because one of them had experience of internships in social groups, they used real cases in the detailed analysis of the system of guardianship in the implementations and the impact on the rights of mentally impaired.²⁰ However, such cooperation is not enough. We also see in some cases, even there are scholars to study gender and disabilities in the team, there still lacks a gender perspective in the study of other scholars.

Finally, disabled communities are becoming more and more involved in studies. We have increasingly heard the voices of disabled people themselves. It turns out that their understanding on the rights of people with disability are not only more advanced and more concrete than that of scholars, but also can bring vitality to the whole team. It also confirms the "nothing about us without us" principle.

Looking to the future, we need to further consolidate the foundation of multidisciplinary research on disability rights, cultivate future scholars in disability research and build multidisciplinary research groups, this will further contribute to the work of protecting the rights of people with disabilities in China.

(Translated by WANG Liping)
 

* ZHANG Wanhong ( 张万洪 ), professor of Institute for Human Rights Studies, Law School at Wuhan University.

** GAO Wei ( 高薇 ), researcher of Wuhan East Lake Community Development Institute.

1. David L. Braddock and Susan L. Parish, "An Institutional History of Disability", in Handbook of Disability Studies, ed. Gary L. Alberecht, Katherine D. Seelman and Michael Bury (Thousand Oaks: SAGE Publications, 2001), 12.

2. Simi Linton, Claiming Disability, Knowledge and Identity (New York: NYU Press, 1998), 132.

3. David L. Braddock and Susan L. Parish, "An Institutional History of Disability", in Handbook of Disability Studies, ed. Gary L. Alberecht, Katherine D. Seelman and Michael Bury (Thousand Oaks: SAGE Publications, 2001), 5-6.

4. Bernard C.K. Choi and Anita W.P. Pak, "Multidisciplinary, Interdisciplinary and Transdisciplinary in Health Research, Services, Education and Policy", Clinical & Investigative Medicine 29, no. 6 (2006).

5. Dan Goodley, Disability Studies: An Interdisciplinary Introduction (London: Sage Publications, 2011), 32.

6. John J. Donohue III, Michael Ashley Stein, Christopher L. Griffin, Jr., and Sascha Becker, "Assessing Post-ADA Employment: Some Econometric Evidence and Policy Considerations", Journal of Empirical Legal Studies 8, no. 3 (2011): 477–503.

7. Douglas Kruse and Lisa Schur, "Employment of People with Disabilities Following the ADA", Industrial Relations 42, no. 1 (2003).

8. Sara E. Kimberlin and Mary Ager, "Economic Theories of Disability Benefits", Journal of Human Behavior in the Social Environment 19 (2009): 70–84.

9. Allison Ruby Reid-Cunningham, "Anthropological Theories of Disability", Journal of Human Behavior in the Social Environment 19, no. 1 (2009): 99-111.

10. Kevin Hindle, "Are Workers with a Disability Less Productive? An Empirical Challenge to a Suspect Axiom", paper submitted to the referred stream of the Anzam 99 Conference, University of Tasmania, September 8, 1999.

11. Ibid.

12. Ma Zhiying, "In the Name of Love and Medical Treatment? On Experience of Hospitalized Female in Psychiatric Hospital from Rights Perspective", in Study on the Rights of the Disabled (Vol. I), ed. Zhang Wanhong (Beijing: Social Science Documentation Publishing House, 2014).

13. Zhang Henghao and Su Fengshan, "The Image Analysis on the Disabled in Post-war Textbooks of Primary Schools in Taiwan", Taiwan Journal of Sociology 42 (2009): 143-188.

14. Dan Goodley, Disability Studies: An Interdisciplinary Introduction (London: Sage Publications, 2011), 92.

15. Ibid., 112.

16. Ryu P. Cheng MSW, "Sociological Theories of Disability, Gender, and Sexuality: A Review of the Literature", Journal of Human Behavior in the Social Environment 19, no.1 (2009): 112-122.

17. Dan Goodley, Disability Studies: An Interdisciplinary Introduction (London: Sage Publications, 2011), 22-32.

18. United Nations Department of Public Information, "The Human Rights Convention on Persons with Disabilities Fill Protection Gaps", http://www.un.org/chinese/disabilities/convention/index.htm.

19. Liuxiaonan and Xiebin: "The Lead in Recruiting Persons with Disabilities in the Public Sectors: An Empirical Research and Policy Recommendations", in Study on the Rights of the Disabled (Vol. I), ed. Zhang Wanhong(Beijing: Social Science Documentation Publishing House, 2014).

20. Chen Bo and Huang Shiyuan, "The Practice of the Mental Disorders Promote Their Individual Autonomy Through Social Work in Shenzhen", in Study on the Rights of the Disabled (Vol. I), ed. Zhang Wanhong (Beijing: Social Science Documentation Publishing House, 2014).