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Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India

Govindharaj, Pitchaimani
Srinivasan, Sampathkumar
Darlong, Joydeepa
2020

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Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.

 

Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.

 

Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.

 

Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.

Disclosure of Disease among Women affected by Leprosy: A Qualitative Study

Ramasamy, Senthilkumar
Govindharaj, Pitchaimani
Kumar, Archana
Panneerselvam, Suganya
2020

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Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.

 

Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.

 

Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.

 

Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.

Physical Activity of the Community- Dwelling Elderly Population in Gujarat, India: A Cross-Sectional Study

Patel, Samira Sirajulhak
Gupta, Nalina
Parmar, Lata
2020

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Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.

 

Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.

 

Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.

 

Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.

NOTHING ABOUT US WITHOUT US! Cooperation with organisations of persons with disabilities in community programmes A learning guide

LIGHT FOR THE WORLD
June 2019

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Good practices of DPO (Organisations of Persons with Disabilities) involvement in Light for the World programmes are analysed and successful ways of supporting DPO empowerment are reported. The paper is based on interviews and focus group discussions with organisations of persons with disabilities (DPOs), other project partners and Light for the World programme colleagues in Bolivia, Ethiopia, Mozambique, Northeast India and South Sudan

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Creating an inclusive school environment

DOUGLAS, Susan
Ed
2019

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This publication draws together research and learning from around the world, in papers which highlight the need for inclusive education and some of the steps being taken to implement it. 

The settings brought to life here reveal the work of teachers, leaders and policy makers in geographically and culturally diverse situations. In each of the chapters we see the challenges they face and the significant efforts they make to ensure access to, and engagement with, a quality education for all children. The collection includes 15 case studies:

 

Special educational needs and disability section:

  • Teaching for All: mainstreaming inclusive education in South Africa
  • Successful inclusive education starts with teachers: what have we learned? A multi-country case study
  • Teaching English as a second language to the visually impaired in disadvantaged contexts: a case study from Chiapas, Mexico
  • The Theatre of the Classroom

Displaced populations section

  • Teaching on the run: safe learning spaces for internally displaced persons
  • Developing resilience through English language teaching in youth centres across Iraq
  • Capacity building for inclusive classrooms: the Living Together training
  • Integrating Syrian refugee children and their parents into Lebanese early education systems

Gender and inclusion in the classroom section

  • A gender equality and social inclusion approach to teaching and learning: lessons from the Girls’ Education Challenge
  • Teacher development and gender equality in five Nigerian states
  • Creating gender-inclusive schools in Turkey: the ETCEP project in action
  • Education, English language, and girls’ development: exploring gender-responsive policies and practices in Nepal

Minority ethnic groups in the classroom

  • Social inclusion and the role of English language education: making a transition from school to higher education in India
  • Storytelling for diverse voices
  • Inclusive education in marginalised contexts: the San and Ovahimba learners in Namibia

 

Effect of Abacus Training on Numerical Ability of Students with Hearing Loss

JADHAV, Atul Kaluram
GATHOO, Varsha Shrikant
2018

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Purpose: The study focussed on the effect of Abacus training on numerical ability (comprising of counting and mathematical operations) of children with hearing loss.

 

Method: 90 students with hearing loss were sampled from 6 special schools in Mumbai, India. A quasi- experimental study was employed using two group pre-test and post-test design. Data were collected using the Numerical Ability Test (NAT) as an instrument. Six null hypotheses based on the objectives were formulated and tested at 0.05 level of significance using t-Test - Assuming Equal Variances.

 

Results: The findings revealed that the experimental group which was instructed through Abacus showed higher proficiency in numerical ability as compared to the control group instructed through the conventional method. Gender as a variable seems to influence the mean achievement of numerical ability of students with hearing loss. While girls and boys did not differ in simple tasks such as counting, boys were found to be better in mathematical operations and overall numerical ability.

 

Conclusions: The Abacus teaching method results in higher mathematical achievements among students with hearing loss. Gender also plays an important role in mathematical learning, as evidenced by boys demonstrating more numerical ability than girls in the study sample.

Towards Inclusion - A guide for organisations and practitioners

VAN EK, Vera
SCHOT, Sander
2017

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This guide is the result of collaboration between Light for the World (LFTW), Mission East (ME), and ICCO Cooperation.

Based on decades of experience of working with the most marginalized and excluded communities, the three organizations cooperated to record their experiences in a publication which can be used in a variety of relief and development contexts. ‘Towards Inclusion’ is designed to be an easy to use reference for organizational and program/project development with a focus on gender responsiveness and disability inclusion.

The guide is made up of three parts:
• the first part guides users through the process of organizational self-assessment to determine readiness to change and identify key steps towards becoming a more inclusive organization.
• the second part introduces the ACAP framework, as a means of improving inclusion in programming via Access, Communication, Attitude and Participation. A range of tools for measuring and improving inclusion at all stages of the project cycle are provided.
• the third part provides guidelines for the people or ‘change facilitators’ who will guide organizations through the process of change towards becoming more inclusive.

The publication can be found at “Towards Inclusion Guide” and the accessible version of the publication can be downloaded. Both are free of charge.

Possibilities for organisation trainings and/or webinars on the practical application of the guide are under consideration. Contact ACAP@gmail.com.

Water justice, gender and disability : South Asian Water Studies (SAWAS), special issues, vol.5, no.4, June 2017

CLEMENT, Florian
NICOL, Alan
CORDIER, Sylvie
Eds
June 2017

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The papers in this volume on gender, persons with disabilities and WASH in South Asia help to provide important pointers on ways forward. A common thread throughout the four articles is that a constellation of challenges still exists, from 'exclusion' through prejudice at different levels, to institutional realities that render policy and other instruments ineffective in practice. In some cases, even, there remains a complete absence of key legal and policy instruments.  

Titles of the articles in this issue are: 

  • Planning for inclusion: exploring access to WASH for women and men with disabilities in Jaffna District, Sri Lanka
  • Breaking down Barriers: Gender and Disability in Access to Agricultural Water Management in Nepal
  • The Gender Gap between Water Management and Water Users: Evidence from Southwest Bangladesh​
  • Are policies enough to mainstream Gender in water and sanitation programs? Experiences from community managed drinking water supply schemes in India

Understanding Hearing Impairment in Individuals from a Perspective of Social and Emotional Functioning

Kodali, Prakash Babu
CT, Anitha
Kopparty, Swarajya
2016

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Purpose: Hearing Impairment is one of the most neglected forms of disability. It accounts for the loss of thousands of disability adjusted life years (DALYs) worldwide (WHO, 2005). Developed countries have made some progress in the measuring and management of hearing impairment (HI), but this is still in the initial stages in developing countries such as India. The International Classification of Functioning disability and Health (ICF) has shifted the approach towards a holistic perspective in defining and measuring disability. This paper tries to measure HI from the perspective of social and emotional functioning of individuals.

 

Method: The sample population consisted of 1160 individuals, selected by systematic random sampling from among those who complied with inclusion criteria. 51.7% of the total respondents were females, and 48.3% were males. The participants were administered a questionnaire (Standardised) and their responses were quantified. The data was analysed using Statistical Package for Social Sciences (SPSS) version 20.

 

Results: Prevalence of HI was found more among males than females. 84.6% of the total population had no hearing impairment, whereas 13.7% had mild to moderate impairment, and 1.7% had significant hearing impairment. The TotalImpairment score obtained by the individuals was divided into Social Impairment score and Emotional Impairment score. Correlation and Multivariate regression analysis were used. Correlation - Age and Social Dimension Score r= 0.609,p≤0.01, n=1160, R2= 0.370; Age and Emotional Dimension score: r= 0.622, p≤0.01, n=1160, R2= 0.386; Regression- Gender and Social Dimension score b= 0.703, t (1160) = 2.988, p<0.05; Age and Total HI score b= 0.787, t (1160) =27.096, p< 0.01.

 

Conclusion: Measuring HI in terms of social and emotional functioning is more holistic and cost-effective, and could be used in resource-poor settings, and for initial screening in large-scale studies.

Disability considerations for infrastructure programmes

AGARWAL, Anjlee
STEELE, Andre
March 2016

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This study identifies and summarises evidence of the impact of non-accessible infrastructure on people with disabilities. It makes recommendations on how to incorporate the principals of universal access into all infrastructure projects. This document should be read in combination with the DFID (UK Department for International Development)​ Disability Framework “Leaving No One behind” (2014), which sets out how DFID promotes inclusion of people living with disabilities in all its programmes. Topics covered include: rationale for inclusive infrastructure; best practices in project planning, engineering design; monitoring and evaluation processes; inclusive design in planning and policy; mainstreaming disability considerations into infrastructure programmes and policy decisions; linking disabilities with cross cutting agendas. 

Participation and quality of life outcomes among individuals with earthquake-related physical disability: A systematic review

NUNNERLEY, Joanne
DUNN, Jennifer
McPHERSON, Kathryn
et al
May 2015

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A literature review to evaluate quality of life and participation outcomes of individuals with earthquake-related physical injury. A systematic review was performed searching MEDLINE, Embase, PsychINFO, CINAHL and AMED electronic databases from 1966 to January 2014. Studies that measured quality of life or participation outcomes among individuals who acquired a physical disability as a result of an earthquake injury were included, with no limits on research design. The search yielded 961 potentially relevant articles after removal of duplicates. Of these, only 8 articles met the inclusion criteria. Seven papers were reviewed from the following 5 earthquakes: 2001 Gujarat earthquake, India; 2008 Wenchuan earthquake, China (also known as the Sichuan earthquake); 2005 Kashmir earthquake, Pakistan (27); 2009 Padang earthquake, Indonesia; 2010 Port-au-Prince earthquake.

Journal of Rehabilitation Medicine, vol.47, no.5, 2015, 385-393

10.2340/16501977-1965

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India

SHARMA, Kriti
December 2014

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This in-depth, illustrated report on the abuses of female patients with psychosocial or intellectual disabilities at institutions in India found that patients experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Easy-to-read version, summary and video also available

Treated worse than animals : abuses against women and girls with psychosocial or intellectual disabilities in institutions in India : summary and key recommendations

HUMAN RIGHTS WATCH (HRW)
December 2014

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This illustrated summary presents the key findings and recommendations of the full report which found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights, including denial of legal capacity, a lack of community-based support and services, verbal and physical violence as well as involuntary treatment and admission. It recommends that “India undertake urgent reforms to guarantee the legal capacity of people with psychosocial or intellectual disabilities and take steps to shift from institutional to community-based care and services for people with disabilities”, with specific recommendations for central and state government level, national and state commissions and international donors

 

Note: Full report, summary report and video also available

Women and girls with a disability in India

HUMAN RIGHTS WATCH (HRW)
December 2014

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This easy-to-read summary uses simple language and clear illustrations to succinctly present the key principles of the full report: “Treated worse than animals: abuses against women and girls with psychosocial or intellectual disabilities in institutions in India”. The report found that female patients with psychosocial or intellectual disabilities at institutions in India experience widespread neglect and abuses of their rights

 

Note: Full report, summary and video also available

Women institutionalised against their will in India

HUMAN RIGHTS WATCH (HRW)
December 2014

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This short video highlights the situation of female patients with psychosocial or intellectual disabilities at institutions in India. In conjunction with the report by Human Rights Watch, it calls for the better treatment of women and girls in institutions and increased de-institutionalization

 

Note: Full report, summary and easy-to-read version also available

Violence Against Persons with Disabilities in Bidar District, India

DEEPAK, S
KUMAR, J
SANTOSH, B
GORNALLI, S
MANIKAPPA, P
VYJANTHA, U
GIRIYAPPA, R
2014

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Violence and sexual violence against persons with disabilities at community level are serious issues. Though CBR programmes and DPOs are expected to prevent violence and offer support to the victims, there is very little informationabout their role in this regard.

 

Purpose: This research aimed to assess the level of violence and sexual violence experienced by DPO members, and the role played by CBR programmes in preventing it.

 

Method: The study involved a non-random consecutive sample of 146 persons with disabilities from 3 sub-districts of Bidar district in Karnataka, India. Using a structured questionnaire, interviews were conducted by a group of trained DPO members and CBR workers, many of whom had personal experience of violence. The data was entered using Epi-Info and then converted into spreadsheet Tables for analysis.

 

Results: 58% of the sample reported having experienced violence and 14% reported experiences of sexual violence during the previous 12 months. Girls and women reported higher levels of violence at different age groups. Male children and young adults reported having experienced more violence, including sexual violence, than older men. The research did not provide conclusive evidence that participation in the CBR and DPO activities played a protective role.

 

Conclusions: Violence and sexual violence against persons with disabilities are serious problems. More research on the subject, in terms of roles of CBR programmes and DPOs, is needed.

Fact sheet : refugees with disabilities

WOMEN’S REFUGEE COMMISSION
2014

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This factsheet highlights the issue of disabilities among refugees and conflict-affected population. It emphasizes actions undertaken by the Women’s Refugee Commission (WRC) and highlights their next steps in disability inclusion

Note: Also available in easy read format

Faith Healing in India: The Cultural Quotient of the Critical

SIDDIQUI, Sabah
LACROIX, Kimberly
DHAR, Anup
2014

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We have had two ‘cultures of critique'. One is where critique of a culture's own principles is generated internally. The other is when critique is mounted from the outside. This paper is an attempt to shore up the two-fold nature of both culture of critique and critique of culture through a close examination of an extant and entrenched cultural practice provisionally called ‘faith healing' in its interlocution with western mental health models that are incumbent upon the Indian setting. This paper will explore what critical theory may need to consider in the context of India. Would it need a cultural turn, a culturalising? What is meant by culturalising? Would ‘culturalising', in turn, be premised on a bidirectional or dual critique, that is, a critique of both the West's hegemonic principles as well as principles that hegemonize the East, emanating from either the West or from the East? What relation would critique set up with an existing culture and cultural practice? What relation would culture set up with an existing culture of critique? In the process, this paper is also an attempt to inaugurate and locate the beginning coordinates of a critique of critique through the turn to culture in conditions called ‘faith healing'. The paper is also about the tense and troubled dialogue between the current globalization of certain frameworks in mental health, and local (faith-based) practices of health and healing that have survived in India; survived even in mutation and transformation, through colonialism, civilizing mission, welfarism and developmentalism. How would the knowledge and practice of mental health take shape in India – a landscape crisscrossed by on the one hand, aggressively modern institutions of mental health science and on the other, extant and surviving institutions of faith-based healing practices? While we remain critically mired in faith-based practices, while we cannot but be critical of some faith-based practices, we also cannot announce the silent demise of all Other imaginations of health and healing and let One global discourse take hold of all cultures. Hence, perhaps the need for what we have called the difficult ‘dual critique’. For critique also means an account of and an attention to experience and practice; an account formulated on its own terms and not on terms put in place by globalizing discourses. 

 

Disability and the Global South, 2014, Vol. 1 No. 2

Disability, livelihood and poverty in Asia and the Pacific - An executive summary of research findings

UNITED NATIONS ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC (ESCAP) SOCIAL DEVELOPMENT DIVISION
November 2012

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This publication on Disability, Livelihood and Poverty in Asia and the Pacific is an executive summary that draws from a wider body of primary and secondary research undertaken by the ESCAP research team. It considers both the quantitative and qualitative dimensions which shape the livelihood experiences of persons with disabilities. The primary research is derived from collaboration between ESCAP and its national research partners: disabled people’s organizations (DPOs) and organizations for the empowerment of persons with disabilities. The research included a survey with 1768 respondents (people with disabilities) in eight countires (Fiji, India, Japan, Kazakhstan, Pakistan, Philippines, Republic of Korea and Thailand

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