Download Hisayo Katsui

Religions and Disability
~Experiences from Christian, Buddhist and Muslim Countries~
By Hisayo Katsui
Table of contents
Background…2
Objective and Methodology…4
Researcher and Resources…7
Expected Results…9
References…10
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Background
Disabled people tend to be vulnerable under the current structure that pressures them to become
deviant in each society (Katsui, 2005). This is a global problem. At present, the number of disabled
people around the world is estimated 600 million, 80% of which live in developing countries
(WHO, 2003, UN/Division, 1999). UN statistics prove that 82% of the world disabled people live
under the poverty line (DPI, 2001). Impairments of 500 million people are estimated to be
prevented or treated (Healthlink Worldwide, 2004). In spite of the significant number, disabled
people have been literally excluded from the poverty alleviation programmes, as only 2% of all
disabled people in “developing” countries receive some kind of support (Yuenwah, 1999, UN,
2000). That is, disability and poverty is connected through their vulnerability. When it comes to
“developed” countries, the word "disability" still connotes social inferiority or stigma. Under the
mechanism of vicious circle, "disabled people are the most marginalized group, multiply
handicapped by social, economical, physical and political conditions" (Yuenwah, 1999:147).
Disability is a universal problem and has become even more globalised through industrialisation
and market economy. Intervention toward policies and practices for disabled people both in
“developed” and “developing” countries is increasingly necessary because the market force does
not result in security, equity and equality but jeopardizes the reality (Coetzee and Wiman, 1999).
On top of that, exploding and ageing population follows prevalence of disabled people, which
makes the situation even more urgent. Nevertheless, "too many governments are uninterested in
disabled people" (UN, 2000). Thus equality for disabled people is a huge problem due to the deeply
rooted discrimination both in “developed” and “developing” countries. In other words, all countries
are developing countries in disability discourse (Katsui, 2005).
To cope with the deficiency of public social services and the existing structure making disabled
people vulnerable, significant number of voluntary organisations has been working for them. These
organisations have been increasingly playing a big role in lives of disabled people. Especially
religious organisations have occupied big part of such voluntary intervention on quality of life
(QOL) of disabled people for a long time in many countries. For instance in England, the history of
church engagement for people in need goes back to Medieval time (Brenton. 1985). However, the
impact of such religious organizations on empowerment and ultimately on equality has attracted
little attention in Disability Studies except for some theoretical arguments or general impression
without thorough empirical studies (See ex. Clapton and Fitzgerald, 1997, Heinicke-Motsch and
Sygall, 2003). According to the hitherto literature, religious implications have been mentioned in
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ambiguous ways. The “religious” or “spiritual” aspect, however, tends to be the one of Christianity
in the existing literature. Christianity was claimed to help disabled people and parents of disabled
people to come to terms with and make sense of having a child with impairment (Hatton et. al.
2004, Arnorld, 1995, Osanai, 2001, Bussema and Bussema, 2000, Treloar, 2002). Idler and Kasl
(1992) explains that religion plays a role against depression of disabled people because religions
separate body and soul which are the Durkheimian dichotomy. Kaye and Raghavan (2002)
summarise existing studies and state that spiritual aspect help both mental and physical health not
only for disabled people but also for various other disadvantaged people. On the other hand,
theological disability is claimed to cause unintended negative image of disabled people in
comparison with the hegemonic image of God as normal. This normality leads to the counter image
of abnormality in disabled people. Therefore, such interpretation of the Bible frequently leads to the
understanding of impairment as a symbol of sin and unbelief (Hull, 2003, Clapton and Fitzgerald,
1997, Ecumenical Disability Advocates Network, 2003). Another critique goes to the advice of
acceptance rather than resistance taught in Christianity (Freeman, 2002). In theory, therefore,
Christianity has both positive and negative impact on QOL of disabled people and its role is
controversial in the literature where two discourses of health and equality have not communicated.
When it comes to other two biggest religions in the world, little is known about the impact to QOL
of disabled people even in theoretical level. In Buddhism, the increase of self-esteem through belief
was also witnessed (Asahi-, 2001). However, for instance in Thailand, Buddhist way of thinking
considers impairments are as “punishment for the person’s wrong-doing in the previous life”
(Yamazaki, 2001:31). This religious understanding of scapegoating current discrimination
undermines the social factors that create the discrimination (Hirose, 1999). In Central Asian Islam,
disabled people use religion for coming to terms with their difficulties (Katsui, 2005). It helps in
increasing self-esteem and mental health. However, it also reinforces the passive and deviant role of
disabled people by “mercy” of non-disabled people on disabled people. Hadith, collections of the
sayings and practices of Prophet Muhammad, explains disability as fate from Allah and thus nondisabled peers have to give mercy to disabled people, which leads to Allah’s mercy to them in
return (Cited as statements of Al-Qaradawi). Explicit example would be zakat, by donating money
for disabled beggars. Koran and Hadith say little about disability directly but about respecting all
human life. Koran mentions rather “disadvantaged” (Banza and Hatab, 2003). The preliminary
conclusion from these studies on religions and disability shows that religious impact is debatable:
personal experiences have been positive to many in terms especially of increase in health, whereas
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collective experiences could lead to reinforcement of discrimination. Existing literature, however,
does not investigate further this complex phenomenon beyond the dichotomy.
Thus this study tries to investigate this important part of disabled people’s lives by paying careful
attention to the sensitivity of religion. More precisely, this study does not evaluate religion as such
but tries to scrutinise personal experiences and current social interpretations of the three biggest
religions in the three specific settings: Finland, Japan and Kazakhstan. I try to deepen the
understanding of one aspect of disability and society by focusing on religious experiences. Thus
studying the society as a whole is also important rather than generalising findings as Christian,
Buddhist or Islamic phenomenon as hitherto studies have done. Religious interpretation has been
interacted with other local, national and international factors to have created and reinforced the
society as it is. That is, religious aspect cannot be totally separated from other factors that co-exist
in the society.
When it comes to the very disabled people, they started to control the discourse around their lives as
citizens rather than traditional role of patients. Disabled people increasingly make decisions on their
own lives including medical and health care decisions. That is, positivistic view became oldfashioned when interpretive approach and further empancipatory approach became central, as is
clear in the following theoretical framework of the concept of disability. Under the significant
change in the social norms of citizens’ rights for making decisions, religious actors became
important arena of negotiation between tradition and the on-going change in the society. However,
disability has been still heavily discussed in the arena of health in spite of the social change.
Disabled people are not only in the health sphere but they are in the society. Therefore, it is high
time to change not only the paradigm but also research focus that goes beyond the boundary of
health as such because what disabled people want is not only health discourse but also equality
discourse.
Objective and Methodology
The objective of this study is to investigate disability and society in three countries by focusing on
the religious experiences of disabled people. The ultimate goal is to contribute to the equality of
disabled people with the newly created knowledge. The key questions are as follows:

What makes disabled people decide to engage with religious activities? How the ambiguous
impact of religion is experienced by the very disabled people?
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

How religious activities conceptualise disability at present? How current religious leaders
interpret their scriptures in terms of disability in their respective countries?
How religious aspect of the society explains discrimination against disabled people? What
are the religious implications toward equality?
Theoretical framework is political model of disability. The concept of disability has developed as
follows in Disability Studies. Under the medical model of disability, disability is the direct
consequence of the individual impairment. Therefore, medical cure or rehabilitation is the natural
solution for disabled people from the viewpoint of scientific authenticity. Disability activists
themselves established the social model of disability that challenged the very assumption of
"normality" and re-defines disability as social oppression (French, 1994). In other words, the
problems are not within the individual disabled person but within society (Oliver, 1990). Political
model conceptualises disability as lack of rights. Thus the rights-oriented approach both
individually and collectively challenges the existing unequal power relationship for the ultimate
goal of equality. In this approach, the concerned people are the subject. Employment of emic view
enables the research to involve the very disabled people right in the centre, which subsequently
follows closer look at the complicated social experiences in their terms. That is, disabled people are
not objects of the study as many hitherto literature (see Bussema and Bussema, 2003, Corrigan,
2003), which is the major originality of this study. If carried out, this research is going to be the first
extensive study that analyses the religious aspect of disabled people’s lives from the political model
and the religious implications toward equality.
The key questions are elaborated through interviews to different groups of people in three countries:
Finland, Japan and Kazakhstan. These countries were chosen due to three reasons. Firstly, their
religions are one of the three biggest religions and different from each other, which will give an
interesting comparative perspectives especially for answering the second question of “official”
interpretation of each religion about disability. Although this is not a comparative study as such
considering the vast difference in their social contexts, this perspective might explain interesting
commonalities of experiences among disabled people in different countries and succeed in
analysing universally strong tie between religion and disability. Secondly, these countries were
chosen because they are similar in the sense that majority of the population of each country believe
in the same religion: Lutheran Christianity in Finland, Buddhism in Japan and Sunni Islam in
Kazakhstan. Yet the religious identity is not strong in general. In this regard, religious activities are
considered as voluntary choice rather than coerced social pressure. Therefore I can study the
voluntary will of disabled people to belong to certain religious activities rather than those imposed
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for them. Thirdly, these countries are familiar countries for me as a Japanese living in Finland for
six years and having studied Central Asia for the last five years. My expertise and knowledge on
these countries will be helpful for understanding the social context in each country where the
activities take place.
Organisational activities are the framework. In Finland, Lutheran Church has series of activities for
different groups of disabled people, one of which is for blind people. Their organisational religious
activities will be the arena of this study in Finland. In Japan, Vihala1 activities are going on in
Niigata prefecture and other places. These activities try to involve people in terminal care and
disabled people to find meaning in their lives through Buddhism. In Kazakhstan, disabled people
are either institutionalised or imprisoned at home (Katsui, 2005). Therefore, religious organisational
activities for disabled people are non-existent, while voluntary organisational activities themselves
are newly introduced space after Perestroika. Disabled beggars are the visible group of disabled
people, while only few other disabled people are on the streets. The beggars are actively engaging
themselves into this activity as recipients of zakat. These beggars are the focus group in
Kazakhstan, if no religious organisational activities for disabled people emerge in the nearest future.
Research participants are the following groups of people: 1) disabled people within the above
mentioned frameworks in respective countries, 2) non-disabled people within the frameworks, 3)
religious leaders and 4) disability activists. Disabled people are the central group among them.
Religious leaders, including priests in Finland, monks in Japan and muftis in Kazakhstan, are
interviewed to understand present interpretation on disability in each religious scripture. Disability
activist outside of such framework of activities are also interviewed to figure out their views on
religion and disability. This is because usually disability activists have politicised view on looking
at the reality which is different from general disabled population. Interviews are transcribed wordby-word. Qualitative content analysis method is applied with the aid of Atlas data analysis
computer programme. In my final paper, an interesting dialogue will take place among the different
groups of people.
Three years, one year for each country, are going to be allocated for conducting this study: in 20052006 Finland, 2006-2007 Japan and 2007-2008 Kazakhstan. In the end of study in each country,
results are presented in some international conferences or in academic journals. It is also important
1
Vihala is a Sanskrit word meaning place to rest. Their main activity is spiritual support.
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that the results are shared in each country in their languages. Thus I will try to publish them in each
country, too. The dissemination of the created knowledge is very important because lack of
information is one of the discriminating factors against disabled people. The information is from
them and thus they have rights to know the results.
Such ethical issues are very relevant throughout this study because I become part of the research
process due to the feature of qualitative research. I will pay careful attention to securing informed
consent, privacy and confidentiality. I will interview to different actors within the same framework,
which necessitate special care not to identify the interviewees because their privacy can be
jeopardised otherwise. Moreover, their personal experiences are to be shared under trust on me.
Thus I will not write any identifiable features of the interviewees in any of my writings to avoid
unintended negative consequences as much as possible. Furthermore, there are some difficulties
when “disengaging” from the field setting because of the attachment. When it comes to disabled
people, they are one of the most vulnerable groups of people who are expected to depend on the
constructed relationship with the researcher (Taylor, 1991). In order to avoid the negative feeling
of participants, such as “being exploited” or “being let down” and also to satisfy my personal wish,
I will keep in touch to my best extent with the participants when they wish. Kleinman (1991:194)
summarises this part in the following:
Does it seem burdensome that, in addition to spending time and effort in the field, field
researchers also must deal with their fears and other unpleasant feelings? Because we are the
instruments of research, it can be no other way. And this unfair burden may have brighter
side, for it allows us to gain deeper knowledge about others and ourselves.
In order to take the responsibilities and fulfil my personal wishes, I will be engaged in disability
related activities. Taylor (1991:247) explains that “sometimes leaving the field means staying in the
field and struggling with the human issues raised by the fieldwork.” I sincerely hope to be engaged
in the following up activities even after this study.
Researcher and Resources
I have good expertise of knowledge on these three countries. Furthermore, I have been studying
about voluntary activities for disabled people since 1998 when I engaged myself into Master’s
Degree. Thus despite of the new aspect of religion in this study, I consider this study as an
extension of my PhD study which focused on society and disability through organisational activities
with political approach. Here are some relevant publications that I made:
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(forthcoming) Victims of Policies ~Experiences of Disabled People in Central Asia~ In T.N. Dhakal and
F. Hossain (eds.) Handbook of Development Administration and Policy. (Publisher in Nepal) Presented in
an international seminar “Governing ‘Good Governance’” 9-11.11.2004. Tampere University, Finland.
(2005) Towards Equality ~Creation of the Disability Movement in Central Asia~ Helsinki University
Press. Helsinki.
(2004) (co-author) Finnish NGOs in International Development Sphere. Project report for KEPA.
(2003) "Conclusion." in Almaty Society of People with Disabilities (ed.) Handbook: International
Seminar, Establishment of Independent Lifestyle Centers across Central Asia. Almaty Society of People
with Disabilities. Almaty, Kazakhstan. P.114-120. (both in English and Russian)
(2002) (co-author) Voices from the Southern Civil Societies ~Interplay of national and global contexts
in the performance of civil society organisations in the South~ Hakapaino Oy. Helsinki.
(2002) Disability NGOs and International Perspectives ~Political, Economical and International
Explanation for the Need of “directly applicable aid and advice~” In ISTR 5th International Conference
~Transforming Civil Society, Citizenship and Governance: The Third Sector in an Era of Global
(Dis)Order~.
7-10.7.2002,
Cape
Town,
South
Africa.
On
http://www.istr.org/conferences/capetown/volume/katsui.pdf
(2001) “Disability NGOs and Lives of Disabled People”
In the Second ISTR Asia and Pacific Regional Conference: The Role of Volunteering and the Third Sector
in Building Stronger Communities 26-28.10.2001, Osaka, Japan
This study collaborates deeply with a research project, “Health Care Decisions2,” headed by
Professor Jaana Hallamaa from Department of Systematic Theology and Docent Ullamaija Seppälä
from Department of Social Policy. The project tries to explore and explicate decisions and choices
that direct and modify health care policies and practices on different levels of the health care
system. The project locates health care in the society as a focal point. The project and this study are
complimentary to deepen the understanding of lives of disabled people in different arenas. The
common perspective is negotiation on decisions between people and the society toward the ultimate
goal of equality. Professor Hallamaa supports this study in social ethics and Docent Seppälä in
narratives of vulnerable people.
In addition, various scholars showed their interests in supporting this study. Professor Eila Helander
from Church and Social Studies at Helsinki University shares her expertise on society and religion.
Dr. Simo Vehmäs from Department of Social and Moral Philosophy at Helsinki University will
exchange ideas on ethical issues in disability. Civil Society Studies Group that I established with
Dr. Richard Wamai is going to play a role in exchanging ideas on voluntarism throughout this
study. In addition to academics, I will have substantial support from a blind priest, Mr. Ari Suutarla
This project is partly funded by the University of Helsinki (76600€) and Service Foundation for the Deaf (67200€).
Furthermore, the project applied from the Finnish Academy 532000€ of additional fund in May 2004.
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for investigating the activities for blind people. When it comes to Japan, from a prestigious public
university, National Museum of Ethnology, Professor Masayuki Deguchi, who is the next president
in ISTR (International Society for Third Sector Research), agreed on supporting my study. When it
comes to Kazakhstan, Dr. Najam Abbas from the Institute of Ismaili Studies in London has
promised his support. I have good contacts of disability activists in these three countries.
The research environment is the Department of Social Policy at Helsinki University, which provides
me with a working room equipped with a personal computer, telecommunication devices
(telephone, e-mail, fax, internet access, and mailing) and access to libraries. Above mentioned
Ullamaija Seppälä and Richard Wamai belong to the Department, which makes it possible to
exchange ideas throughout this study. When I succeed in getting this grant, above-mentioned
Professor Deguchi from National Museum of Ethnology in Japan orally agreed to welcome me as
an external research fellow during my stay in Japan. In Kazakhstan, my contact person has been
undergoing the negotiation with three professors in Almaty for similar contract. As this is a multidisciplinary study with different geographical cases, I will need to network with different specialists
and colleagues.
Funding is another important resource to implement this study because I will need to travel to Japan
and to Kazakhstan for five months each during the three-year-research period. Thus I apply for
162,819 Euro of grant in total. That includes salary (135,119 €), travel costs (14,300€), book
purchase (2,000€), language services (2,350€), conference participation costs (2000€ each year) and
publication costs (3000€). I am going to apply different scholarships from Japan such as Toyota
Foundation for civil society studies in May 2005 and Abe Fellowship for global study in Social
Sciences in September 2005.
Expected Results
When successful, this research will create important knowledge on the personal experiences of
disabled people in religious activities on the one hand and religious implications toward equality on
the other. “Personal is political” has been a famous slogan for minority movement. Yet private
sphere from the perspective of disabled people has been known little and will remain hidden if
enough attention is not paid. The strong tie between religion and disability is extensively explored
from the perspective of disabled people in this study, which will fill the gap between the hitherto
literature.
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Moreover, this study produces a deeper understanding than ever before about different
interpretation and experiences in the three biggest religions. Although these three contexts are
different not only in terms of religions but also of many other senses, disability will introduce an
interesting cutting point to investigate the reality. In this way, empowerment and disempowerment
of disabled people toward equality is elaborated. Furthermore, my previously conducted researches
on organisational activities for disabled people from traditional charity approach in England
(Master’s thesis) and activities of disabled people from political approach in Central Asia (PhD
thesis) will give analytical tools to investigate the religious activities from their comparison.
The research findings will be published to share this created knowledge both to the research
participants and to wider audience. This is important part of the research methodology to give the
information back to them. On top of the journal articles and conference presentations, it is also
possible to publish the results from the three countries in one book. When presenting the results, I
will pay special attention to the accessibility to blind people and visually impaired people in
addition to the audience who use different languages such as sign languages, Japanese, Finnish, and
Russian. I will also try to publish the main findings in a popular version that is written in a more
accessible manner for non-academics. I intend to provide the findings accessible to as many people
as possible in this way.
References
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Asahi Shinbun. (2001) Butsudo de: Sou ga “Fukai Manzoku” Toku. On 16.1.2001. On
http://www.sutokukai.or.jp/nagaokanishi-hp/Asahi.htm Visited on 1.11.2004.
Banza, M.S. and Hatab, T.A. (2003) “Disability in the Qur’an: The Islamic Alternative to Defining, Viewing, and
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Brenton, M. (1985) The Voluntary Sector in British Social Services. Longman. London.
Bussema, K. E. and Bussema, E. (2000) “Is There a Balm in Gilead? The Implications of Faith in Coping with a
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