Resources search

A disability inclusive response to COVID-19 - four lessons learned about including people with disabilities in humanitarian aid

MORRIS, Lisa
ELLIOTT, Chris
PIERI, Susan
September 2021

Expand view

Inclusive Futures played a crucial role in supporting some of the most marginalised people with disabilities in Bangladesh, Kenya, Nepal, Nigeria, and Tanzania during the COVID-19 pandemic. This paper summarises what we learned and it can be used to include people with disabilities in future programming, particularly in contexts at risk of crisis.

The Globalization of the Diabetes Epidemic

BONNEAU, Claire
2021

Expand view

As globalization continues to bring everyone and everything closer together, not all of the trade-offs are necessarily positive. As we export our unique cultures and experiences around the globe, we also increase the spread of chronic health problems.

For much of the 20th century, a person’s likelihood of developing a chronic health disease like type II diabetes depended on the wealth of the country they lived in equally as much as their own biology and genetic factors. In wealthy, developed countries, people are much more likely to survive to old age and eventually pass away from diseases of affluence — chronic diseases like cancer, heart disease, and diabetes that primarily impact the ageing population. In contrast, people living in developing nations are much more likely to experience malnourishment, violence, and communicable diseases that have a major impact on their overall health and quality of life.

This distinction has proven to be true across many developed countries, including globalization giants like the United States. Even in the more economically disadvantaged areas of America, hardly anyone dies as a result of communicable diseases like tuberculosis, a disease that is still a serious problem in lesser developed nations. Alternatively, in low to middle-income countries, these types of health concerns are still a going concern. Alongside the increased risk of encountering a communicable disease, people living in these areas are also at a higher risk for developing diseases of affluence such as type II diabetes. In this way, people living in developing nations are more likely to experience cancer while also battling cholera infections, and someone living with diabetes is also more likely to be struggling with chronic malnourishment. This lack of distinction between diseases of affluence and communicable diseases puts people living in developing nations at a disadvantage.

In this new global landscape of health and disease, the impact of diabetes is truly overwhelming. Since 1980, the number of people living with diabetes has almost doubled from 152 million to between 285-347 million (1). As a result of this dramatic increase, health spending and global costs have also had to increase to meet the growing demand for care. In 2019, it is estimated that diabetes caused over 760 billion USD in health expenditures, making up about 10% of all global spending on adults (2).

As the prevalence of diabetes continues to grow around the world, we need to shift our attention to finding global solutions to this invisible epidemic. Understanding the connection between obesity, globalization, and diabetes is a great starting point in order to tackle this ever-growing global health problem.

Disability Inclusion Helpdesk, July 2021 Evidence digest: disability-inclusive education in focus

SDDirect
July 2021

Expand view

Disability Inclusion Helpdesk evidence digest highlights the latest evidence, guidance, and programme learning on inclusive education. Within it you’ll also find the latest evidence, guidance and policy news on a range of other disability inclusion topics including stigma, discrimination, and violence; poverty, social protection, and employment; inclusive health systems; and disability inclusion in humanitarian settings.

“This Time of Corona Has Been Hard”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Kenya

ROHWERDER, Brigitte
NJUNGI, Josephine
WICKENDEN, Mary
THOMPSON, Stephen
SHAW, Jackie
June 2021

Expand view

The COVID-19 pandemic is deepening pre-existing inequalities. Emerging research suggests that people with disabilities across the world have experienced various rights violations and been disproportionality affected by the health, economic and social impacts of the COVID-19 pandemic and the responses to it. The aim of this research was to explore how people with disabilities, who often are excluded from research, have experienced the evolving COVID-19 pandemic in Kenya. To better understand how it has affected jobseekers with disabilities, in-depth qualitative research was conducted in Kenya as part of the Inclusion Works programme.

“The Situation has Exposed Persons with Disabilities to Double Edged Pain”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Uganda

WICKENDEN, Mary
ROHWERDER, Brigitte
SHAW, Jackie
THOMPSON, Stephen
WAKOKO, Eric
June 2021

Expand view

This qualitative study was undertaken as part of the work of the Foreign, Commonwealth and Development Office (FCDO) funded Inclusion Works programme which aims to improve inclusive employment for people with disabilities in four countries: Uganda, Kenya, Nigeria, Bangladesh. When the COVID-19 pandemic emerged early in 2020 the work of this consortium programme was adapted to focus on pandemic relief and research activities, while some other planned work was not possible.

“This pandemic brought a lot of sadness”: people with disabilities’ experiences of the COVID-19 pandemic in Nigeria

THOMPSON, Stephen
CHUBA-UZO, Shadrach
ROHWERDER, Brigitte
SHAW, Jackie
WICKENDEN, Mary
June 2021

Expand view

This qualitative study was undertaken as part of the work of the FCDO funded Inclusion Works programme which aims to improve inclusive employment for people with disabilities in four countries: Uganda, Kenya, Nigeria, Bangladesh. When the COVID-19 pandemic emerged early in 2020 the work of this consortium programme was adapted to focus on pandemic relief and research activities, while other planned worked was not possible.
The Institute of Development Studies (IDS) led a piece of qualitative research to explore the experiences and perceptions of the pandemic and related lockdowns in each country, using a narrative interview approach, which asks people to tell their stories, following up with some further questions once they have identified their priorities to talk about. 10 people with disabilities who were involved in Inclusion Works in each country were purposively selected to take part, each being invited to have two interviews with an interval of one or two months in between, in order to capture changes in their situation over time. The 10 interviewees had a range of impairments, were gender balanced and were various ages, as well as having differing living and working situations.

“Everything is Totally Uncertain Right Now”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Bangladesh

SHAW, Jackie
AKTER, Fatema
ROHWERDER, Brigitte
WICKENDEN, Mary
THOMPSON, Stephen
June 2021

Expand view

The COVID-19 pandemic is deepening pre-existing inequalities. Emerging research suggests that people with disabilities across the world have experienced various rights violations and been disproportionality affected by the health, economic and social impacts of the COVID-19 pandemic and the responses to it. The aim of this research was to explore how people with disabilities, who often are excluded from research, have experienced the evolving COVID-19 pandemic. In order to better understand how it has affected jobseekers with disabilities, in-depth qualitative research was conducted as part of the Inclusion Works programme in Bangladesh.

The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period

PATEL, Varsha
PEREZ-OLIVAS, Gisela
KROESE, Biza Stenfert
ROGERS, Gemma
ROSE, John
MURPHY, Glynis
COOPER, Vivien
LANGDON, Peter E
HILES, Steve
CLIFFORD, Clair
WILLNER, Paul
2021

Expand view

Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.


Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the rst 2020 lockdown period.


Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.


Results: Four main themes were identied: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.


Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These Findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations

HUMAN RIGHTS WATCH
HUMANITY & INCLUSION
INTERNATIONAL DISABILITY ALLIANCE
WOMEN ENABLED INTERNATIONAL
WOMEN'S REFUGEE COMMISSION
April 2021

Expand view

Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations on the occasion of the twentieth anniversary of Security Council resolution 1325 by Humanity & Inclusion, Human Rights Watch, International Disability Alliance, Women Enabled International and the Women’s Refugee Commission.

This submission sets out information and recommendations on promoting and protecting the human rights of women and girls with disabilities in conflict and post-conflict situations. Women and girls with disabilities are disproportionately impacted by armed conflicts, yet remain underreported and excluded from peace and security processes. Women and girls with disabilities account for nearly one-fifth of all women and girls worldwide and face multiple and intersecting forms of discrimination based on their gender, as well as their disability. Sustainable peace, recovery and inclusive humanitarian action requires the full, equal and meaningful participation of diverse women, including women and girls with disabilities. The Office of the High Commissioner on Human Rights, in its report, should request member states, the Human Rights Council and its mechanisms, as well as other stakeholders to ensure that monitoring and reporting on the experiences of women and girls in conflicts includes the specific experiences of women and girls with disabilities, and ensure their meaningful participation in conflict prevention, response, peacekeeping and peacebuilding.

Engaging girls and women with disabilities in the global South: Beyond cultural and geopolitical generalizations

NGUYEN, Xuan Thuy
STIENSTRA, Deborah
2021

Expand view

This article invites readers to engage with girls and women with disabilities in the global South. It challenges the epistemological domination of Western disability studies in Southern bodies and contexts, and provides one specific way to read the intersection between disability, gender, and ethnicity in the context of Vietnam. Drawing on the politics of engagement developed within the Transforming Disability Knowledge, Research, and Activism project, we argue for recognizing the lingering impacts of colonialism and imperialism in producing disability and impairment in the South, while suggesting new ways of engaging with disabled girls and women through the use of inclusive, decolonial, and participatory methods.

‘Because of COVID, Everything is a Mess’ How Have People with Disabilities Experienced the Pandemic in Nepal and Bangladesh?

ROHWERDER, Brigitte
THOMPSON, Stephen
SHAW, Jackie
WICKENDEN, Mary
KAYASTHA, Shubha
SIGDEL, Anita
AKTER, Fatema
BOSRI, Rabia
March 2021

Expand view

COVID-19 is deepening pre-existing inequalities. Emerging research suggests that people with disabilities across the world have experienced various rights violations and been disproportionality affected by the health, economic and social impacts of the pandemic and responses to it. The aim of this research was to better understand how people with disabilities who are often excluded from research have experienced the evolving COVID-19 pandemic in Bangladesh and Nepal. In order to better understand how it has affected some of the most marginalised groups of people with disabilities, this study used in-depth qualitative research to focus on people with intellectual, psychosocial, deafblindness and other multiple impairments.

 

আমরা বাংলাদেশে (20 জন লোক) এবং নেপালে (15 জন লোক) বসবাসরত 35টি ডিজেবলড লোকদেরকে কোভিড-19 প্রাদুর্ভাব চলাকালীন সময়ে তাদের জীবন সম্পর্কে জিজ্ঞাসা করেছি। তাদের মধ্যে বধিরতা, নেত্রহীনতা, বৌদ্ধিক ডিজেবিলিটি এবং মানসিক ডিজেবিলিটি’র মতন বিভিন্ন ধরণের ডিজেবিলিটি রয়েছে। তাদেরকে জিজ্ঞাসা করার প্রধান কারণ হল যে প্রায়শই তাদেরকে তাদের জীবন সম্পর্কে কিছুই জিজ্ঞাসা করা হয় না। আমরা ডিজেবলড বাচ্চাদের বাবা-মাদেরকেও তাদের অভিজ্ঞতা সম্পর্কে জিজ্ঞাসা করেছি।

 

हामीले बङ्गलादेश (20 जना मानिस) र नेपाल (15 जना मानिस) मा अपाङ्गता भएका 35 जना व्यक्तिलाई कोभिड-19 को प्रकोपको समयमा आफ्नो जीवन बारे हामीलाई बताउन अनुरोध गर्‍यौं। उहाँहरूलाई वणदृष्टिविहीन, बौद्धिक अपाङ्गता र मनोसामाजिक अपाङ्गता जस्ता विभिन्न अपाङ्गता थिए। उहाँहरूलाई प्रायः आफ्नो जीवन बारे नसोधिने भएकोले हामी उहाँहरूलाई सोध्न चाहन्थ्यौं। हामीले अपाङ्गता भएका बालबालिकाका आमाबुवाहरूलाई पनि सोध्यौं।

Life Becomes Harder: Intersectional Feminist Lens to Dis/abled Experience of Women in Afghanistan during Covid 19 Pandemic and Post Covid Development Context

SHAJAHAN, Sharin
2021

Expand view

More than 40 years of war, ethnic conflict, violence and poverty have made Afghanistan a country where at least one in five live with a serious physical, sensory, intellectual, or psychosocial disability. Women with disabilities in Afghanistan are considered to be ‘doubly stigmatized’ due to gender inequality and disability stigmatization, and are often hidden from the social and political aspects of life. Although in the post-Taliban era, development interventions backed by international aid have been designed to include women with disabilities, their intersectionalities cutting across class, ethnicity, region, different types of impairments and other positionalities have not been explored to address different needs, barriers and inequalities across various regions. In this context, the Covid 19 crisis has made the lives of Afghan women with disabilities harder due to gender discrimination, stigma and shame, unemployment, lack of mobility, lack of awareness, and insufficient institutional support and infrastructure coupled with widespread feelings of insecurity resulting from conflict and terrorist attacks. Based on both primary and secondary data, this paper will shed a feminist intersectional insight into the plight of women with dis/abled experience during the Covid 19 pandemic in the complex political and social terrain of Afghanistan. The paper will also explore visions for designing interventions aimed at integrating women with disabilities in post Covid development plans.

Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability

ROSENBAUM, Peter L
SILVA, Mindy
CAMDEN, Chantal
January 2021

Expand view

Purpose: The worldwide COVID-19 pandemic has changed almost all aspects of our lives, and the field of childhood disability is no exception.

 

Methods: This article is based on an invited lecture by the first author at a conference–the eHealth Summit (“Pediatric Rehabilitation in a Digital Space”)–organized by the other authors and their colleagues in May 2020.

 

Results: The first author offers his own experiences and perspectives, supplemented by comments and observations contributed by many of the 9000+ attendees at this talk, as curated by the second and third authors. The basic messages are that while life for families of children with developmental disabilities, and for service providers who work with them, is significantly altered, many important lessons are being learned.

 

Conclusions: The comments from participants support the currency of the ideas that were presented, and encourage childhood disability professionals to reflect on what we are learning, so that we can seize the opportunities they afford to do things differently–and we believe better–moving forward.

Social media and disability advocacy organizations: caught between hopes and realities

GELFGREN, Stefan
INELAND, Jens
COCQ, Coppélie
2021

Expand view

This article examines the role of advocacy organizations and their use of social media within the field of disability in Sweden. How do the organizations negotiate digital media, and what are the (intentional or unintentional) consequences related to the use of social media? With focus on the representatives of advocacy organizations, we study how they reflect and act in order to balance various motives, and what challenges and ambiguities that arise. On one hand, there is a perceived need to be online and communicate with members and the surrounding society. On the other hand, digital communication induces a divide between those who have the resources to take part in such communication, and those who do not – in terms of digital competence, economy, age, cognitive abilities, technical equipment and digital connection. The heterogeneity of resources and target groups inevitably challenges both the ideals of inclusion and intentions of advocacy organizations.

The impact of COVID-19 measures on children with disabilities and their families in Uganda

MBAZZI, Femke Bannink
NALUGYA, Ruth
KAWESA, Elizabeth
NIMUSIIMA, Claire
KING, Rachel
VAN HOVE, Geert
SEELEY, Janet
2021

Expand view

To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

Determining Frailty in People With IntellectualDisabilities in the COVID-19 Pandemic

FESTEN, Dederieke A M
SCHOUFOUR, Josje D
HILGENKAMP, Thessa I M
OPPEWAL, Alyt
2021

Expand view

Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication of individuals with ID
into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic.


Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classied according to the CFS and the ID-frailty index.


Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classifed as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classied as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classied by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID.


Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.

E-bulletin