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COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region

MEHROTRA, Nilika
SOLDATIC, Karen
2021

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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.

Emergent Disability voices on Social Media during COVID -19 times

MEHROTRA, Nilika
2021

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Persons with disabilities are invisible and almost silent in the Indian media. This paper examines the emergence of articulate expressions of persons with disabilities (pwd) in the social media over the months March to June 2020 during COVID Lockdown. While technology has been seen as a great leveller for persons with disabilities, the digital divide, however, remains very real for masses of disabled persons, whereby it is largely the educated middle class who have access to internet facilities and presence on social media. This paper draws from observation and analysis of posts on Facebook by different categories of persons with disabilities. There appear to be a number of discourses emerging and imageries running almost parallel. Accessibility and support appear to be very important issues especially in terms of access to domestic workers, regular medical checkups, and procuring daily provisions as well as access to online teaching. On the other hand, little concern is being paid to the huge humanitarian crisis of returnee workers from cities to villages. Interestingly, disabled persons appeared more connected, participating in discussions and Webinars and voicing out their experiences with greater clarity and also analysing the COVID situation through Disability Studies (DS) perspectives.

Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

Mental health of LGBTIQ+ people in India during the COVID 19 pandemic: risks, access, lessons

TENNETI, Suchaita
2021

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The COVID-19 pandemic and the associated containment measures have resulted in a mental health crisis globally. Marginalised populations have been disproportionately affected during the pandemic with an aggravation of existing inequalities, and this has increased the risks to their mental health. The LGBTIQ+ population is among those marginalised whose lives have been rendered even more precarious than before by the pandemic. This paper explores some of the main risks to the mental health of LGBTIQ+ people in India, the advice being given to them by mental health professionals and activists, and need for queer revisionings of uncertainty, the concept of a future and individualism.

Psychosocial Consequences of COVID-19 on Persons with Visual Impairments

NAYAR, Mahima
JUVVA, Srilatha
LAKSHMAN, Chitra
2021

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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts. 

Making themselves heard: deaf people in India during the global COVID-19 pandemic

GULYANI, Ritika
2021

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The onset of the sudden and global pandemic, COVID-19, has forced all of us to change our ways of living and interacting with the outside world. Additionally, a lot of restrictions on movement mandated by governments have also been issued in the past few months. In the context of India, a nationwide lockdown was in place from midmarch till the end of May. These lock-downs have had serious consequences for various segments of the population across the country, especially, those on the margins, who are vulnerable and/or in a minority. One such segment has been the disabled population. This paper, with the help of narratives, addresses the challenges faced by the deaf population during the COVID crisis and the ways in which they have negotiated these. There has been a big void in the dissemination of information to the deaf, owing to the fact that the majority of information from official sources has not been translated into sign language. More so, in times when information is the key to maintaining proper health care, this is a big lacuna. Additionally, the paper will also talk about the role of technology as well as of deaf groups in the lives of deaf people, and how it has proved to be very helpful to not just spread proper awareness about the pandemic, but also in trying to build up a movement in trying to recognise Indian Sign Language as the 23rd Official Language of India. 

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.

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.

Effectiveness of Community-Based Rehabilitation on the lives of Parents of Children with Cerebral Palsy: A Mixed Method Study in Karnataka, India

Bokalial, Doly
Hossain, Forhad Md
Kumar, Senthil N S
Bajracharya, Shristi
2020

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Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.

 

Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.

 

Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.

 

Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.

The mobile disability gap report 2020

ARANDA-JAN, Clara
December 2020

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As we move towards a more digital society, it is critical that digital technologies are inclusive of everyone, including persons with disabilities. However, research conducted by the GSMA Assistive Tech programme suggests that a disability gap exists in mobile access and use.

Driving greater inclusion of persons with disabilities requires data and evidence to inform actions from multiple stakeholders. This report looks to understand the digital divide experienced by persons with disabilities, identify existing barriers to digital inclusion and define strategies and actions to close the mobile disability.

This report uses data from the GSMA Intelligence Consumer Survey 2019 to explore the digital inclusion of persons with disabilities in eight LMICs: Bangladesh, Brazil, India, Kenya, Mexico, Nigeria, Pakistan and Uganda. This report looks at key stages and milestones in the journey to mobile internet use that can pose barriers to regular and diverse mobile use

Quality of wheelchair services as perceived by users in rural Bangalore district, India: a cross-sectional survey

GEILEN, Bart G
DE WITTE, Luc
NORMAN, Gift
GEORGE, Carolin Elizabeth
2020

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Background and aim:

This study investigated the current state of wheelchair services in Bangalore Rural district, as provided by Bangalore Baptist Hospital, and identified areas for improvement.

 

Method:

a cross-sectional survey was held among 50 wheelchair users. Data was collected on demographics, satisfaction, wheelchair skills and level of disability using QUEST, WST-Q and CHART-SF questionnaires.

 

Result:

Overall satisfaction can be described as more or less satisfied, scoring 3.8 out of 5. Wheelchair users were less satisfied with the services compared to the wheelchair itself. The skills a wheelchair users had were strongly correlated with satisfaction scores (p < 0.01). Differences in satisfaction between genders were observed and related to multiple factors.

 

Conclusion:

Wheelchairs should be easy to use with support services being easily accessible. A wheelchair should be delivered together with a training program to provide the user with the skills to operate and maintain the wheelchair. There are gender-wise differences in satisfaction towards wheelchair services that influence satisfaction.

Estimating assistive product need in Cameroon and India: results of population‐based surveys and comparison of self‐report and clinical impairment assessment approaches

BOGGS, Dorothy
KUPER, Hannah
MACTAGGART, Islay
MURTHY, GVS
OYE, Joseph
POLACK, Sarah
November 2020

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To estimate population need and coverage for distance glasses, hearing aids and wheelchairs in India and Cameroon, and to explore the relationship between assistive product (AP) need measured through self‐report and clinical impairment assessment.

Population‐based surveys of approximately 4000 people each were conducted in Mahabubnagar district, India and Fundong district, Cameroon. Participants underwent standardised vision, hearing and musculoskeletal impairment assessment to assess need for distance glasses, hearing aids, wheelchairs. Participants with moderate or worse impairment and/or self‐reported difficulties in functioning were also asked about their self‐reported AP need.

 

https://doi.org/10.1111/tmi.13523

Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

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.

Effects of Biofeedback and Task-Oriented Intervention on Balance Confidence and its Relationship with Social Participation among Stroke Survivors

Pachiappan, Elumalai
2020

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Purpose: The study aimed to compare the effects of balance training on balance confidence and its relationship with social participation among clients with stroke.

 

Method: A pre- and post- experimental group design was used. Stroke survivors who met the inclusion criteria were consecutively assigned to two groups (task- oriented and biofeedback). Participants in the task-oriented group received task- oriented activities for 20 minutes and the biofeedback group received intervention in correckta (equipment used for balance training) for 20 minutes, along with conventional occupational therapy - 5 sessions per week, for 12 weeks. Balance Confidence Scale was used for measuring balance confidence, and Frenchay Activities Index (FAI) was used to measure social participation. Statistical calculations were performed with SPSS version 16.0 package. Statistical tests were carried out with the level of significance set at p≤ 0.05.

 

Results: The findings suggest that both the biofeedback and task-oriented groups showed significant improvement in balance confidence and there was no statistically significant difference between the groups. There was a moderate to good relationship between balance confidence and social participation.

 

Conclusions and Implications: There is evidence that many stroke survivors have low balance confidence. Therapists should assess the balance confidence of their clients and encourage them to participate in these beneficial interventions.

Psychosocial Functioning in Children with Dyslexia: Perspectives from Parents, Counsellors and Teachers

BAJAJ, Deepali
BHATIA, Sangeeta
2020

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Purpose: The study aimed to understand the issues and challenges encountered by various stakeholders (teachers, parents and counsellors) working with children with dyslexia in the inclusive school context.

 

Method: Using purposive and snowball sampling, 20 teachers, 20 counsellors and 20 parents (mothers) of children with specific learning disability (dyslexia) were selected from 8 inclusive schools in Delhi. A qualitative approach was adopted, with a semi-structured interview schedule to elicit responses. Qualitative thematic analysis was used as a framework for data analysis.

 

Results: Parents experienced negative feelings due to lack of awareness and acceptance of dyslexia. Counsellers felt parental ignorance led to delay in assessment and remediation. Parents and counsellors perceived lack of support from schools and lack of empathy among teachers. Teachers confessed they lacked training to deal with dyslexic learners, were unaware of policies and concessions for them, and were currently overburdened with their workload.

 

Conclusion: There is a need to hold psycho-educational workshops for parents in order to increase their awareness, and conduct training workshops (pre-service and in-service) for teachers to increase awareness and build empathy. Schools should provide in-house assistive services such as assessment and remediation, and redefine the goals of education to focus on the holistic skills of children.

Inclusion of persons with disabilities in social protection for COVID-19 recovery and beyond

COTE, Alex
BALASUBRAMANIAN, Meenakshi
WANGARE, Fatma
HUDA. Karishma
DOS SANTOS, Joaozito
O'BRIEN, Felicity
September 2020

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The COVID-19 crisis has magnified the barriers and inequalities faced by persons with disabilities. Consultation with organisations representing persons with disabilities across regions highlighted the limitation of social protection systems in LMICs to provide adequate support due to lack of social protection schemes, low coverage, and inadequacy of existing schemes. There is little in the way of publicly funded community support services and in some contexts an overreliance on residential institutions, whose users have been disproportionally represented among COVID-19 fatalities. 

In the midst of the crisis, countries have been struggling with inaccessible information (e.g sign language), the lack of universal schemes, and national disability registry for broad outreach and fast relief.

The webinar aimed at providing a global overview of the social protection response for persons with disabilities and their families as well as the different key social protection issues to consider for an inclusive COVID-19 recover

Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

Neglected and forgotten: women with disabilities during Covid crisis in India

GOYAL, Nidhi
RAGHAVAN, Srinidhi
KOTHARI, Ketan
July 2020

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This report is a collaborative initiative of Rising Flame and Sightsavers to respond to the urgent needs of women with disabilities in India during the COVID-19 pandemic.  The aim of this research was to capture and amplify voices and narratives of women with disabilities  and to make strong recommendations to ensure inclusion of women with disabilities in social, legal, policy and systemic responses.

Online and telephonic research consultations were carried out in May 2020,  within the barriers faced or accommodations needed by participants, including access to internet, the need for sign language interpretation and the establishment of a safe space. A total of 82 women with disabilities and 12 experts across 19 states and nine self-identified disability groups participated in the research.

Broadly, the study is divided into access, food and essentials, social protection, health, hygiene and sanitation, education, employment and livelihood, domestic violence and emotional well-being. The study explores the ongoing barriers experienced by women across disabilities and makes recommendations to build back a better and more inclusive world.

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