JOURNAL: The Review of Disability Studies: An International Journal

Posted on 17 January 2008. Filed under: Academic Papers and Research, Children, Cross-Disability, Disability Studies, East Asia Pacific Region, Education, HIV/AIDS, Human Rights, Middle East and North Africa, Rehabilitation, South Asian Region, Sub-Saharan Africa Region | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |

[Originally published at wecando.wordpress.com (We Can Do) at http://tinyurl.com/2gkrzx]

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Researchers and students, but especially people new to their field, can find it challenging to locate research, essays, and other academic literature about people with disabilities in developing countries. This may be in part because there are few international, disability-oriented journals available to publish such literature. One of the few exceptions is The Review of Disability Studies: An International Journal (RDS).

The RDS journal publishes research articles, essays, and bibliographies on the culture of disability and people with disabilities. On occasion, it also publishes poetry, short stories, creative essays, photographs, and art work related to disability. It publishes four times a year, with approximately 50 pages in each issue. People can subscribe to RDS for a fee, or people can download past issues of RDS for free. Issues from 2006 onward are available in either Word format or PDF format; older issues are available in text-only format.

This publication is not focused solely on developing countries. In fact, many of its articles are written by researchers and writers in industrialized countries, particularly the United States. But some of its articles may be of interest to We Can Do readers. Some examples are listed further below. I chose some of these articles because they deal specifically with disabled people in developing countries; I list others because they deal with broader themes, such as exclusion, that transcend national and income boundaries.

Please note that it is not possible to download separate articles. To read a specific article that interests you, you will need to download the full issue it is in and then skip ahead to the correct page. Page numbers given are based on the PDF version where applicable. Page numbers will be slightly different in the Word version. Or click on the hyperlink within the Word file to be taken directly to the article you select.

Please also note that this is not a comprehensive listing of all articles in past issues of RDS. For example, I usually skipped over book reviews–but I did see a few for books that would be relevant to disabled people in developing countries. You may wish to explore the RDS on your own by following this link.

Selected RDS Articles

A Little Story to Share

A Little Story to Share” by Lee-chin Heng, Volume 1, Issue 2, 2004, page 109-111. Abstract: An autobiographical story of a person from Malaysia with physical disabilities who possesses an associate diploma in music. Download in text-only format (2.1 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSissue012004.pdf .

Who is Disabled?

Who is Disabled? Who is Not? Teachers Perceptions of Disability in Lesotho” by Christopher Johnstone, Ph.D. Candidate Educational Policy and Administration University of Minnesota, Volume 1, Issue 3, 2005, starting on page 13. Abstract: This paper reports on educational research conducted in Lesotho, Southern Africa. Mixed methods of research were used to elicit and describe teachers’ attitudes toward children they perceived as disabled. The study took place in a country where discussions on ‘the Continuum’ of services, specialist diagnoses, and Western notions of assistive technology are largely irrelevant. Over-arching themes are compared to themes that have emerged from special education and Disability Studies literature over the past decade. Download in text-only format (715 Kb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS01032005.pdf

Evaluation of MA Program in Rehabilitation Counseling

Evaluation of Master of Arts Program in Rehabilitation Counseling and Guidance Service for Persons with Disabilities in Thailand” by Tavee Cheausuwantavee, M.Sc. Ratchasuda College, Mahidol University, Thailand, Volume 1, Issue 3, 2005, starting on page 66. Abstract: This research examines the positive and negative aspects of the Master’s Degree in Rehabilitation Counseling and Guidance for persons with disabilities in Thailand, since it began in 1997. A CIPP model was utilized for the program evaluation. Multiple methods were used to collect the data, and both retrospective and prospective data collection were undertaken. The research results indicated many positive outcomes. They also indicated certain features of rehabilitation within the Thai context differed significantly from traditional rehabilitation counseling programs in Western countries. Download in text-only format (1.4 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS01032005.pdf

Leprosy in South India
Leprosy in South India: The Paradox of Disablement as Enablement” by James Staples, Ph.D., School of Oriental and African Studies, University of London, Volume 1, Issue 4, 2005, starting on page 13. Abstract: Rooted in ethnographic fieldwork with people affected by leprosy in India, this article argues that certain impairments, in certain social contexts, are simultaneously disabling and enabling. This paradox poses difficult challenges, not only for those working with individuals affected with leprosy, but for disability activists
andpolicy-makers. Download in text-only format (3 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS01042005.pdf

Social and Economic Stress Related to HIV/AIDS Epidemic in Botswana
Social and Economic Stress Related to the HIV/AIDS Epidemic in Botswana” by Thabo T. Fako, Ph.D. & Dolly Ntseane, Department of Sociology,University of Botswana & J. Gary Linn, Ph.D. & Lorna Kendrick, R.N., Ph.D. School of Nursing Tennessee State University, Volume 2, Issue 1, 2006, starting on p. 33. Abstract: The paper describes the consequences of HIV/AIDS in Botswana; the country with the highest HIV prevalence rate in Africa. In addition to frequently experienced trauma due to sickness and death, many households experience rising health expenditures and a sharp deterioration of incomes. High levels of morbidity and mortality among workers result in depressed returns on investment, reduced productivity and increased expenditure on training and replacement of workers. As the health care system finds it increasingly difficult to cope, home-based care provides an inadequate solution since the home infrastructure of many households is inadequate for proper care of seriously ill patients. The stigma associated with AIDS often isolates fragile households and provides an environment in which abuse of infected individuals and of orphans whose parents have died of AIDS is not uncommon. The quality of education also suffers, resulting in an ill prepared skilled manpower, with adverse consequences for social, economic, and political development as well as for good future governance of the country. Download in PDF format (3 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS02012006.pdf or in Word format (800 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDS02012006.doc

Toward a Global History of Inclusive Travel
Toward a Global History of Inclusive Travel” by Laurel Van Horn, M.A., Open Doors Organization, USA; José Isola, President, Peruvian Polio Society, Peru, Volume 2, Issue 2, 2006, starting on page 5. Abstract: This paper provides an overview of the development of inclusive travel and tourism, from its origins in the United States and Europe following World War I and II to its current status as an increasingly important and viable movement worldwide. The paper investigates the key roles played by disability organizations, disability rights legislation, technological change, international organizations and pioneers within the travel and tourism industry. Developments are described sector by sector for air travel, ground transport, the cruise lines and the hospitality industry. While the primary historical focus is the U.S., the paper also highlights advances taking place in Dubai, Egypt, India, Japan, South Africa, Thailand and other countries. It concludes with a case study by José Isola of the development of inclusive travel in Peru. Mr. Isola also describes disability conferences that took place in South America in 2004. It is hoped others will begin to investigate the development of inclusive travel in their own countries and regions and contribute to a truly global history. Download in PDF format (1.4 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS020206.pdf or in Word format (700 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDS020206.doc

Ethnobotany on a Roll!
Ethnobotany on a Roll! Access to Vietnam by My Lien T. Nguyen, Ph.D., Department of Botany, University of Hawai’i, at Mānoa, Volume 2, Issue 2, 2006, starting on page 36. Abstract: This article describes the research and experiences of an ethnobotanist with a physical disability working in Vietnam. Due to a spinal cord injury, the ethnobotanist uses a wheelchair and walking canes to explore the bustling food markets of Vietnam. Information and recommendations are provided for equipment and traveling to and in Vietnam, particularly for those interested in conducting scientific research and for travelers with physical disabilities. Success is largely due to the mutual respect and kindness shared by people along the way, and by accepting and accommodating to given situations. Appendices of resources for travel in Vietnam and educational granting sources for people with disabilities provided. Download in PDF format (1.4 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS020206.pdf or in Word format (700 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDS020206.doc

The Benefits of Studying Abroad
Making an Impact: The Benefits of Studying Abroad” Michele Scheib, M.A., Project Initiatives Specialist, National Clearinghouse on Disability and Exchange, Volume 2, Issue 2, 2006, starting page 50. Abstract: Qualitative interviews with ten individuals with disabilities who participated in a study abroad program within the past eight years, compared equally to long-term outcomes cited in studies with the general study abroad alumni population. Students reported increased self-confidence, independence and career or educational gains related to their study abroad experiences. Download in PDF format (1.4 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS020206.pdf or in Word format (700 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDS020206.doc

Esau’s Mission
Esau’s Mission, or Trauma as Propaganda: Disability after the Intifada” by Marcy Epstein, University of Michigan, Volume 2, Issue 3, 2006, starting on page 12. Abstract: Israelis and Palestinians, while sharing an I/Abrahamic root, many chapters of Semitic history, and common values of resourcefulness and valor, both have defended their cultural boundaries through the exchange of mutilating, annihilative blows upon the other. The intifada (an Arabic word meaning to shake off or shiver because of illness, fear, or weakness) of the millennium signify a trope of body and status among the fragmented population in the region; specifically, the propagandizing of traumatic events that suggest victimization and invalidation. The discursive nature of “unnatural” catastrophe–devastation of Palestinian communities by Israeli Defense Forces, blitzing of Israeli civilians in planned attacks–substitutes the propaganda of trauma for the reality of disability experienced in both cultures. Reflecting the duality of rhetorical positions seen in I/Abraham’s disposition of both Isaac and Esau, this essay links the root of trauma propaganda to the ideology of religious fitness and righteousness. Download in PDF format (1.4 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS02032006.pdf or in Word format (600 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDS02032006.doc

Natural Hazards
Natural Hazards, Human Vulnerability and Disabling Societies: A Disaster for Disabled People?” by Laura Hemingway & Mark Priestley, Centre for Disability Studies, University of Leeds (UK), Volume 2, Issue 3, 2006, starting on page 57. Abstract: The policy and research literature on disaster management constructs disabled people as a particularly “vulnerable group.” In this paper we combine concepts from disaster theory and disability theory to examine this assumption critically. Drawing on primary, secondary and tertiary sources, we assess the vulnerability of disabled people in two globally significant disasters: Hurricane Katrina in August 2005 and the Asian tsunami of December 2004. In both cases, disabled people were adversely affected in terms of their physical safety and access to immediate aid, shelter, evacuation and relief. Using a social model analysis we contest the view that this vulnerability arises from the physical, sensory or cognitive limitations of the individual and show how it may be attributed to forms of disadvantage and exclusion that are socially created. The paper concludes that “natural hazards” are realized disproportionately as “human disasters” for disabled people, and most notably for disabled people in poor communities. Social model approaches and strong disabled people’s organisations are key to building greater resilience to disaster amongst “vulnerable” communities in both high-income and low-income countries. Download in PDF format (1.4 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS02032006.pdf or in Word format (600 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDS02032006.doc

Politics and the Pandemic
Politics and the Pandemic: HIV/AIDS, Africa, and the Discourse of Disability” by Laura L. Behling, Gustavus Adolphus College, St. Peter, Minnesota, Volume 2, Issue 3, 2006, starting page 97. First Paragraph: In 2004, Africa News filed a report on then 12-year old William Msechu, a young African who lost both of his parents to AIDS in 1999. He, too, was HIV positive. Msechu is characterized as a “very bright boy,” although, the article reports, he is “yet to come to terms with his HIV status.” “I was told that I have tuberculosis and I am getting better,” the article quotes William as saying to journalists (“HIV-AIDS and STDs” 2004). William Msechu’s disbelief at having contracted HIV is unremarkable; persons diagnosed with severe diseases, including HIV/AIDS, often work through denial and incredulity.1 Just as unremarkable, however, is Msechu’s contention that he had not tested positive for HIV, but rather, had contracted tuberculosis, another widespread disease but not nearly as stigmatizing as HIV/AIDS. Substituting “tuberculosis” for “HIV” may be an affirming measure for Msechu, but it also provides one more example of the rhetorical slipperiness that historically, and still continues to accompany, the HIV/AIDS pandemic. Download in PDF format (1.4 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDS02032006.pdf or in Word format (600 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDS02032006.doc

Seeing Through the Veil
Seeing Through the Veil: Auto-Ethnographic Reflections on Disabilities” by Heng-hao Chang PhD., Nanhua University, Chia-Yi, Taiwan, Volume 2, Issue 4, 2006, starting page 6. Abstract: This article is an auto-ethnography reflecting the interactions among society, my family and my brother who has Cerebral Palsy. The experiences of me and my family show the visible and invisible veils that segregate people with disabilities and their families from mainstream Taiwanese society.” Download in PDF format (1 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv02iss04.pdf or in Word format (630 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv02iss04.doc

Building Familial Spaces
Building Familial Spaces for Transition and Work: From the Fantastic to the Normal” by Joakim Peter, MA, College of Micronesia—Federated States of Micronesia, Chuuk Campus, Volume 2, Issue 4, 2006, starts page 14. Abstract: Transition for persons with disability is a process of negotiating difficult situations and barriers set by others and by systems. My strategies to overcome those barriers in my personal transitions through education systems and employment included the creations of familiar spaces in which group support plays a major role. This paper tracks my process through the familiar spaces and gives examples of encounters with barriers along my transition through hospital treatments to schools and then work.” Download in PDF format (1 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv02iss04.pdf or in Word format (630 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv02iss04.doc

A Model for Learning from Children
Family Focused Learning: A Model for Learning from Children with Disabilities and Their Families via Technologies for Voice” by James R. Skouge, Kathy Ratliffe, Martha Guinan, & Marie Iding University of Hawai‘i at Manoa, Volume 2, Issue 4, 2006, starting page 63 Abstract: In this paper, we describe a collaborative multidisciplinary model for faculty and students learning about culture and children with disabilities and their families in Pacific Island contexts. The model, Family Focused Learning, incorporates aspects of case-based and problem-based learning within the context of “consumer” and “professional” partnerships (Ratliffe, Stodden, & Robinson, 2000; Robinson, 1999).Children with disabilities and their families share the daily challenges and successes of their lives with graduate students and faculty at the University of Hawai‘i, via video letters, video mapping, cultural brokering and satellite videoconferencing. To illustrate this process, we present the story of “Tomasi,” a child with cerebral palsy in American Samoa, a US territory. Tomasi and his family are “given voice” and act as teachers for an interdisciplinary team of faculty and students from public health, social work, physical therapy, speech pathology, nursing, special education, nutrition, medicine, political science and law.” Download in PDF format (1 Mb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv02iss04.pdf or in Word format (630 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv02iss04.doc

Social Change and the Disability Rights Movement
Social Change and the Disability Rights Movement in Taiwan 1981-2002” by Chang, Heng-hao. Ph.D., Department of Sociology, Nanhua University of Chia-Yi, Volume 3, Issues 1 & 2, 2007, starting on page 3. Abstract: This paper provides a historical overview of the disability rights movement in Taiwan from 1981 to 2002. It shows the major events in Taiwanese disability history, legislation, and development of disability rights organizations, with a focus on two influential advocacy associations: the Parents’ Association for Persons with Intellectual Disabilities (PAPID) and the League of Enabling Associations (LEAs). It also demonstrates that the disability movement has developed in concert with Taiwan’s democratic transition.” Download in PDF format (780 Kb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss01.pdf or in Word format (770 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv03iss01.doc

Disability and Youth Suicide
Disability and Youth Suicide: A Focus Group Study of Disabled University Students” by Esra Burcu, Ph.D., Hacettepe University, Department of Sociology, Volume 3, Issues 1 & 2, 2007, starting page 33. Abstract: For young people thoughts of suicide are based on various social factors. The research literature in this area reveals that there are two important interrelated factors that correlate with suicide rates: being young and being disabled. This study was undertaken in order to explore possible reasons for this increased tendency for young disabled people to commit suicide. The study was carried out at a university in Turkey with a group of disabled students. All the members of the focus group had thoughts of suicide and felt that their disability played an important role in creating these thoughts. The basic premise of the research was that physical disability increases the young person’s isolation and social loneliness and this can generate ideas of suicide in the young person’s mind that may be acted upon.” Download in PDF format (780 Kb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss01.pdf or in Word format (770 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv03iss01.doc

Impact of the South Asian Earthquake
Impact of the South Asian Earthquake on Disabled People in the State of Jammu and Kashmir” by Parvinder Singh, Ph.D. Candidate, Jawaharlal Nehru University, Volume 3, Issue 3, starting page 36. Abstract: On the morning of October 8, 2005, a devastating earthquake, measuring 7.6 on the Richter scale, struck the Kashmir region with its epicentre near Muzzafarabad in Pakistan-administrated Kashmir. It took a while for both India and Pakistan to comprehend the scale of destruction that the quake had unleashed. In the two weeks following, the quake had left over 50,000 dead on the Pakistani side of the India-Pakistan border and claimed 1,300 lives on the Indian side. A second wave of deaths was expected with the onset of the region’s notorious winter. Download in PDF format (600 Kb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss03.pdf or in Word format (380 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv03iss03.doc. Or, this article has also been published at We Can Do with permission of the author and RDS.

The Scale of Attitudes Toward Disabled Persons
The Scale of Attitudes Towards Disabled Persons (SADP): Cross-cultural Validation in a Middle Income Arab Country, Jordan” by Kozue Kay Nagata, Senior Economic Affairs Officer of the Development Cooperation Branch, United Nations Department of Economic and Social Affairs, Volume 3, Issue 4, 2007, starting page 4. Abstract: The purpose of this pilot study was to assess the level of the existing attitudinal barriers towards disabled persons in four communities of Jordan. Jordan is a middle income Arab country, with a PPP-adjusted GDP/capita of US$ 4320. The study attempted to determine the present level as a baseline of prejudice against people with a disability in Jordan, and to examine the relationship between the randomly selected participants’ attitudes and their previous exposure to and experience with disability. The Scale of Attitudes towards Disabled Persons (SADP) was selected as the instrument. An Arabic translated version of the Scale was used for 191 participants. The respondents showed overall negative attitudes towards disabled persons, as illustrated by previous documented materials. The result of this survey was highly correlated with the collective opinion expressed by the focus group that was conducted by the author in Amman in January, 2005. Thus, the cross-cultural validity of this instrument has been confirmed, and the major findings of this pilot study could inform future policy directions and public awareness raising strategies to foster positive public attitudes. Download in PDF format (530 Kb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss04.pdf or in Word format (410 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv03iss04.doc

Barriers to Education
Barriers to Education for People with Disabilities in Bekaa, Lebanon” by Samantha Wehbi, MSW, Ph.D., School of Social Work, Ryerson University, Volume 3, Issue 4, starting page 10. Abstract: This paper presents the findings of a recent study on the educational situation of people with disabilities in Lebanon. The main findings of a survey conducted with 200 participants in the impoverished rural Bekaa region illustrate the inadequate educational situation of people with disabilities. The focus of the paper is on a discussion of the barriers that people with disabilities face in pursuing their education. Participants identified the following difficulties in pursuing their education: educational system barriers, inadequate finances, health issues, transportation difficulties, and family pressures. Although the focus of the article is not on factors that can facilitate educational achievement, some of these supports are identified, including family support and personal motivation. The article concludes with a discussion of current and planned community responses such as the development of an interdisciplinary community action network (The Inclusion Network), the provision of literacy courses, and a pilot project to foster the inclusion of children with disabilities in mainstream schools. Download in PDF format (530 Kb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss04.pdf or in Word format (410 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv03iss04.doc

Jordan and Disability Rights
Jordan and Disability Rights: A Pioneering Leader in the Arab World” by Kenneth R. Rutherford, PhD, MBA, Missouri State University, Volume 3, Issue 4, 2007, starting page 23. Abstract: This article investigates Jordan’s rationale for assuming a leadership role on the disability rights issue in the Arab World. Tens of millions of people, including over ten percent of Arab families, are impacted and impoverished because of disability. To address this substantial challenge, the Jordan Royal family has leveraged Jordan’s tradition of openness and generosity coupled with one of the best educational systems in the Arab World to promote disability issues. As a result, Jordan is recognized by the international community as leading the Arab World in promoting disability rights. Jordan’s international and regional leadership on disability rights was recognized in 2005 when Jordan received the Franklin Delano Roosevelt International Disability Award. Download in PDF format (530 Kb) at http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss04.pdf or in Word format (410 Kb) at http://www.rds.hawaii.edu/downloads/issues/doc/RDSv03iss04.doc

You can browse and download past issues of the Review of Disability Studies: An International Journal at http://www.rds.hawaii.edu/downloads/.

Or you can learn more about the RDS at http://www.rds.hawaii.edu/about/.

The RDS is always looking for new authors to submit materials for publication.



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PAPER: Impact of South Asian Earthquake on Disabled People

Posted on 27 October 2007. Filed under: Academic Papers and Research, Disaster Planning & Mitigation, South Asian Region | Tags: , , , , , , , , , , , , , |

Impact of the South Asian Earthquake on Disabled People in the State of Jammu and Kashmir
Parvinder Singh, Ph.D. Candidate
Jawaharlal Nehru University

Abstract: On the morning of October 8, 2005, a devastating earthquake, measuring 7.6 on the Richter scale, struck the Kashmir region with its epicentre near Muzzafarabad in Pakistan-administrated Kashmir. It took a while for both India and Pakistan to comprehend the scale of destruction that the quake had unleashed. In the two weeks following, the quake had left over 50,000 dead on the Pakistani side of the India-Pakistan border and claimed 1,300 lives on the Indian side. A second wave of deaths was expected with the onset of the region’s notorious winter.
Our thoughts immediately went to what may be happening to disabled people in the State of Jammu and Kashmir, though we knew the answer, based on our bitter experiences of seeing disabled people being neglected even in the so-called normal scenarios. Our National Disability Network partner in the mountainous and violence ravaged State confirmed our fears of the “general neglect” being compounded in the wake of this calamity.
With information gained from the Asian Tsunami and impending legislation on Disaster Management on the floor of Indian Parliament, we decided it was imperative to draw up the difficulties that disabled people face during natural disasters to facilitate some churning of our national consciousness and possibly a policy intervention. What follows is an account of a fact-finding mission, its findings and recommendations, on the impact of the Kashmir quake. It is a story of persistent neglect, which turns grave when calamities strike.

Key Words: disaster, Kashmir earthquake, disability

Introduction

Late last year, a devastating earthquake shook the Himalayan region of the Indian subcontinent. The two rival nations, India and Pakistan, were united in grief as the scene of death and destruction unfolded. But as this event showed, just like Hurricane Katrina almost halfway across the globe, those who are collectively consigned to the margins of policy focus and safety plans are not only the worst sufferers of disasters, but also the least attended. India did not have a disaster management policy when the South Asian Earthquake took place. It was in a phase of finalisation. But the policy makers once again failed to focus on the needs of over 700 million disabled and aged people, as the final draft of this plan did not make even a single mention of these sections of the population.

Impact of South Asian Earthquake on Disabled People

On the morning of October 8, 2005, a devastating earthquake, measuring 7.6 on the Richter scale, struck the Kashmir region with its epicentre near Muzzafarabad in Pakistan-administrated Kashmir. However, it took a while for both India and Pakistan to wake up to the scale of destruction that the quake had unleashed. In just the two weeks since, the quake had left over 50,000 dead on the Pakistani side and taken 1,300 lives in India. The toll rose substantially by the second wave of deaths with the onset of the region’s winter.

Immediately after the quake, the National Centre for Promotion of Employment for Disabled People (NCPEDP), Disabled Peoples’ International – India (DPI – India), and the National Disability Network (NDN) contacted the NDN State Partner, Javed Ahmad Tak of Helpline, a Non-Government Organization (NGO) working for the rights of disabled people in the remote parts of Jammu and Kashmir. Through him we came to know stories that went beyond what the newspaper headlines could capture, particularly with regards to the status of people with disabilities. Their plight was multiplied manifold due to the reported lack of coordination and inaccessibility.

With these concerns in mind, a team consisting of myself, Senior Project Coordinator with NCPEDP and Mukhtar Ahmad and Muzzamil Yakub, both from a local disabled peoples’ NGO Helpline, visited quake affected areas in Kashmir from October 18th to 20th to take first hand stock of the status of the rescue, relief, and rehabilitation process with a specific focus on people with disabilities. The objective was to get disability included in the long-term rehabilitation plans being mooted by sensitising the State’s polity and the civil administration. Further, we also wanted to understand the disability scenario in the region: the administrative framework, implementation of the Disability Act, and the existence of disability NGOs–including their functioning, reach, and awareness levels that will help in planning their work for the future.

We visited hospitals, relief camps, and villages in Baramulla, Uri, Tangdhar, and Salamabad. During the course of our visit, we contacted the Honourable Governor, Lieutenant General Shri S.K. Sinha, State Social Welfare Minister Shri Mula Ram, and the State Human Rights Commissioner Justice A. Mir. We also spoke to other personnel, including several local officials, medical staff, and doctors, as well as quake-affected people. But before detailing our first-hand experience of the chaos and ordeal of people in the State, it is important to conceptualise the unique and not so-unique aspects of the State, particularly its status as a conflict zone.

Kashmir: Disaster and Disability in a Conflict Zone

The State of Jammu and Kashmir has had a history of violence and political turmoil ever since India and Pakistan attained political independence from British rule in 1947. The two neighbours have fought full-scale wars in 1947 and 1971, besides a near-war like conflict in 1999 called the Kargil War, over the region. The bone of contention between the two nations has been the treaty of accession that was signed by the then ruler of Jammu and Kashmir and Lord Mountbatten in 1947 through which the state was ceded to India. Pakistan has refused to accept this fact.

The State was thrown into turmoil in the 1990’s as Islamic militancy grew roots in the region and enlisted thousands of local youth into the vortex of violence. Today the State has the largest deployment of soldiers and para-military in any single region in India. This conflict combined with political discontent among the locals has given birth to an extremely complex sociophysiological situation in the State. Deaths, gunfire, blasts, disabilities, and unaccounted disappearances have subjected the local population to trauma associated with a conflict zone for several years. The impact on vulnerable groups has been severe, particularly women and disabled people. A number of civil society groups are engaged in providing support to a wide social group undergoing mental health issues, including widows, rape victims, and orphaned children.

The State dubbed by many past rulers as “a heaven on the earth” for its breathtaking mountainous beauty, offers difficult living conditions due to its severe winters and inaccessible terrain that is compounded by poor infrastructure. The people here are predominantly Muslim and have a strong ethnic identity. A large part of the State formed a very volatile border with Pakistan until a recent cease-fire agreement came into force. The cross-border shelling and heavy artillery fire has been a constant feature for people living in the bordering villages. This shelling and artillery fire has been a major cause of physical disability, along with insurgency related causes.

It needs to be underlined here that, at least so far as our Indian experience is concerned, disabled people and issues related to them are way down the list of social and administrative concerns as the so-called pressing issues that confront a much larger or visible vote-bank are given a precedence. This situation holds true for Jammu and Kashmir as well. However, what makes it worse here is that the agenda of development has found a very myopic interpretation here, as this unending violence has not allowed any sustained growth.

Various institutions like schools and hospitals reflect a lack of even basic accessibility features. Javed, our local disability NGO partner, has been fighting for years now to get some disability-friendly changes initiated in the Kashmir University. After each incident of violence that gets noticed nationally, authorities almost spontaneously issue token compensation and artificial limbs to disabled people. This effort, however, is never sustained to make those affected economically and socially independent. Curfews are an order of the day in the streets of the Kashmir Valley and incidents abound of people being shot in the dark of the night because they were too slow in responding to a call by troops to move away or step into the light. Problems of sanitation, portable water, and transport make life for disabled and aged people very tough.

Relief Distribution Left Disabled People Unattended

After the earthquake, it was a clear display of the Darwinian theory of the survival of the fittest when it came to relief distribution, which for the most part was a hit-and-run drill of dumping relief materials by NGOs, political parties, and charitable trusts. This scene was apparent all along the National Highway No. 1/A from Baramulla onwards. Though there was plenty of aid, the takers of the relief material distributed through this method were ironically very limited in number. These were largely young boys who could slug it out in the jostling crowd. We saw this at least at a dozen points starting from the outskirts of Uri.
As we spoke to persons with disabilities who received aid, we were astonished by their stories. One said:

“I have walked here with great difficulty. My braces are my only mode of travel as the artificial limb that was given to me by the Indian Army at the Bone and Joint Hospital in Srinagar (winter capital of India-administered Kashmir) has cracked and I will need a new one…There is a mad rush when relief is being distributed. People are desperate. My father is very old and I have five sisters. This makes me the only one in the family who can come out and hunt for relief. My house has got destroyed completely and we have been camping in the open for past eleven days.”

The 22-year-old man had lost his right limb a few years ago when a shell landed on his house. He was trapped in the ensuing fire. He had been trekking over seven kilometres each day, since his house was destroyed in the quake, to the District Medical Centre in Uri to try his luck and get some blankets.

This experience is indicative of why a targeted approach is needed for people with disabilities, who face unimaginable difficulty in accessing relief in times of disasters. This problem was compounded in the case of Kashmir due to its mountainous terrain and the general inaccessibility of the region. The small settlements in the area defy the usual conception of a village and might be no more than a set of six to eight houses far from the navigable road. As I moved around the fringes of the highway that led to the neighbouring Pakistan border, I kept hearing of families stuck near their destroyed dwellings in the hills as the able-bodied male members came out to get in touch with lower-level government employees who almost always double as relief workers in case of calamity.

The Uri region has been a focal area for projects run by state power and construction companies. They were one of the first institutions, after the Indian Army, who had set up relief and first aid centers. I spoke to some of the officials manning these and was told that they had not seen any disabled person coming over from the villages in the hills. “It is unlikely that a disabled person would trek so far in these circumstances. We have sent teams out on foot, but in my knowledge they have not reported having met any in this area (Salamabad),” said an official manning a small centre set up by Hindustan Construction Company.

My personal observation revealed three disabled people slugging it out in the crowds that had gathered at relief distribution points. This struggle for relief material brought to my mind the general neglect that disabled people face in the country on account of lack of policy focus, which in turn is fostered by lack of empowerment and awareness among people with disabilities.

Lack of Coordination and an Existing System with Specific Focus on Disabled People

According to an estimate of the disability sector, there are over a million people with disabilities in the state of Jammu and Kashmir. A large number of these people have been disabled due to incidents relating to mine explosions, shelling along the Line of Control, and militancy-related violence. In view of the above situation, the lack of attention that the civil administration and its officials displayed in terms of attending to people with disabilities came as a surprise.

As happens after every disaster in the sub-continent, the employees of Union and State governments are rushed to these areas to open rather ill-equipped so-called relief centres. These junior-level employees are not trained to deal with such scenarios. “There is no specific brief to be kept in mind so far as disabled people are concerned. I will definitely help them on account of humanity. We know things can be tough for them,” said an official at a point set up by the National Hydro Power Corporation.

We visited an Information Centre set up by the State Administration outside the Sub Divisional Magistrate’s office in Uri to find out if any disabled people had approached them for help. The officials on duty told us in general that those approaching them were NGO workers, and not victims. “Can you tell me what villages we can go to? I have been waiting to find an area where we can help victims affected by the quake…it has been two days,” said David Martin from US-based charity called Helping Hands. “All of us have been affected by the quake. Why are you enquiring only about people with disabilities? They will ultimately receive some help,” said an official outside the District Hospital in Uri.

My interaction clearly brought out the general lack of coordination. People from affected villages blamed politics or apathy as the reason for the lack of timely relief. It also highlighted the absence of orientation towards the needs of disabled people.

Quake Injuries Indicate A Likely Rise in Disabilities

During our visit to hospitals in Baramulla, Uri, and Srinagar we attempted to take stock of the kind of treatment people with disabilities needed, the assistive or orthopaedic devices they needed, and the nature of the injuries that were being reported. Dr. S.A. Rashid, Medical Superintendent of the Bone and Joint Hospital in Srinagar stated:

“The true picture of rehabilitation that these victims will need would emerge only in the coming months. Most of these injuries were caused by dislodged objects. Quite a few of these people would not be able to function as before. There are cases of compound fracture that may get complicated, and some of them may even need amputation.”

The office of Medical Superintendent at Sher-e-Kashmir Institute of Medical Sciences voiced the same opinion. Doctors on duty said that the majority of the 211 cases related to the earthquake were of injuries to the limbs and head. Dr. Samina of Sher-e-Kashmir Institute of Medical Sciences added that:

“Three amputations have taken place so far (till 20th October). These include two men and one girl. They have been referred for surgery. In fact the girl’s amputation was done today itself.”

I also observed reluctance on the part of doctors and hospital medical staff in sharing information, possibly because of heavy politicisation that saw leaders of all hue frequenting these hospitals.

Dr. Jatinder Singh of the Bone and Joint Hospital in Srinagar told us of three amputations in his hospital. He also mentioned that several other cases could end up with amputations. For instance, he added a seven-month-old infant had suffered multiple fractures and was brought in 12 days after the earthquake and there was a great chance that he could end up with a disability. He also informed us about one patient, Khalid, who had a disability on account of severe dislocation of a knee and was now on the verge of amputation, even as the doctors were trying to save him from it. These visits clearly highlighted the need for both immediate and long-term intervention for providing aids and appliances, apart from medical intervention to avoid or minimise instances of disabilities.

I was also told about a team of doctors from the National Institute for the Orthopaedically Handicapped, Kolkata [Calcutta], having visited these hospitals and meeting some of the victims who have undergone amputations. But as highlighted by the doctors, there is a need for more organized and exhaustive undertakings.

I came across some NGO workers who were engaged in counselling of victims suffering from trauma. One such group, from Delhi, was manning a small centre beyond Salamabad, barely 5 kilometres from the Line of Control (unofficial India-Pakistan). “In a single day we have received about 120 people coming in for the first time since the quake. Most of these people have very minor problems and are here more because this is their first touch with compassion, after being shocked and traumatized by the destruction and death around them,” said an NGO worker.

The valley has had a known prevalence of trauma cases since the time insurgency took root, and with the quake it is going to increase. We felt that the people need a greater engagement by the way of easy and accessible counselling, as short-term/temporary measures would not help.

Rehabilitation Must Take A Macro-Approach to Integrating the Needs of Disabled People

Moreover, Commanding Officer of 56 Rashtriya Rifle, an elite anti-terrorist unit of the Indian Army that operates in the Uri sector stated that:

“As our men were close to the area of impact and are well-versed with the topography here, we reacted immediately to carry out rescue operations. We continue to coordinate with the administration and civilians in getting across the relief. But our role cannot be long-term or stretched beyond a point. The civil administration will have to step in and rehabilitate the people affected by the quake.”

This quotation sums up the challenge with which the civil administration is confronted. This phase of rehabilitation in Kashmir is going to be as important as that of relief, as the availability of a cover over the head would mean a difference between life and death.
“Our homes have got destroyed by the wrath of nature. As it is, the life is difficult here. We are among the lucky few who are putting up in the tent city. But we will have to return to pick up pieces and rebuild our lives,” said Noor Mohammad who is putting up at the tent camp near Tangdhar, an area which has sustained the greatest damage on the Indian side of Line of Control, in terms of property. While some families in Tangdhar and Uri districts have decided to reconstruct the damaged houses using re-usable material, the state government is providing each of them with financial assistance of Rs. 100,000 [100,000 rupees] for reconstruction work. In addition, 450 engineers of the state government are being trained in two batches to guide families in rebuilding their damaged houses. Building demonstration centers are also being set up in six places in the two districts.

Almost 26 villages have been adopted by various agencies including the Army, Air Force, Border Security Force, the National Hydro Power Corporation (NHPC) and the Delhi Government. But on the projected requirement of 30,000 tents, the Government has managed to procure just over half that number.

Despite two major disasters in recent years, the Asian tsunami and the Kashmir earthquake, governments have failed to wake up to the need for placing an administrative system in place to make special provisions to ensure expeditious rescue and relief for disabled people. The long term policy measures that have been announced since then also do not reflect any learning on the part of the governments on the devastating impact that disasters have on disabled people who are not only worst hit, but also last to get any rehabilitation. An explanation for the complete neglect of disabled people by policy makers can be found in the corresponding lack of awareness and political rights of disabled people in this part of the world. A society and polity attuned to the rights of its marginalised sections is the only solution for an effective and inclusive disaster policy.

Another issue that will have to be addressed is that of the lack of a technical knowledge-base that impedes a systematic response to these disasters. The chaos that follows these disasters is also responsible for overlooking marginalized sections of the population. The training of disaster response teams and civil and administrative coordination in such situations would have to be addressed and while doing so the needs of vulnerable sections would have to be prioritized.

Recommendations

Following this visit, we made following broad recommendations to the Government of India:

  1. There is an urgent need to collect data on disabled people who have been affected by the earthquake. Not only should we look at the data of those who have been rendered disabled, also that of those with a disability who have survived but are affected and people with psychosocial problems compounded or caused by the disaster.
  2. Concrete and time-bound plans must be made to address disability concerns in revival of livelihoods, achieving convergence among all on-going programs of sustainable development, and reconstruction.
  3. Disabled-friendly and inclusive built environments must be considered when reconstruction of shelters (temporary or permanent), schools, health centres, housing facilities, water and sanitation facilities, etc. takes place.
  4. International and other N.G.O.s supporting the Government in relief/rehabilitation/reconstruction work should include disability on their agenda.
  5. Disability should be a priority area for any policy that is being formulated for preparedness, mitigation and management and other efforts to prepare us to face similar challenges with confidence, and competence in the future.
  6. This is a good opportunity to correct the mistakes. The Disability Act should be enforced in the State.

Parvinder Singh is a Senior Project Coordinator with the National Centre for Promotion of Employment for Disabled People in Delhi, India. He has worked as a journalist and social science researcher, and is currently working on his Ph.D. in Modern Indian History at the Jawaharlal Nehru University.


This paper was originally published in The Review of Disability Studies: An International Journal (RDS), a peer-reviewed, multidisciplinary, international journal, published by the Center on Disability Studies at the University of Hawaii at Manoa. It was published in Volume 3, Issue 3, 2007 (376 Kb in Word doc format). The main page of the journal is at http://www.rds.hawaii.edu/. Thank you to Parvinder Singh and the editors of RDS for their permission to publish this paper at We Can Do.


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