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No tech about us, without us

SALELKAR, Amba (IDA)
BANDUDKA, Maryam (GDI hub)
OJOK, Banya (IDA)
September 2023

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Two short talks concerning the centering of assistive technology projects on persons with disabilities and organisation of persons with disabilities (OPD/DPO). The talks are presented by a representative from IDA in India and one from IDA in Uganda. The talks are introduced by Maryam Bandudka of GDI hub. Story telling, the CPRD, communities of practice and advocacy are mentionned

 

Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

Seeking information about assistive technology: Exploring current practices, challenges, and the need for smarter systems

DANEMAYER, Jamie
HOLLOWAY, Cathy
CHO, Youngjun
BERTHOUZE, Nadia
SINGH, Aneesha
BHOT, William
DIXON, Ollie
GROBELNIK, Marko
SHAWE-TAYLOR, John
September 2023

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Assistive technology (AT) information networks are insular among stakeholder groups, causing unequal access to information. Participants often cited fragmented international marketplaces as a barrier and valued info-sharing across industries. Current searches produce biased results in marketplaces influenced by commercial interests and high-income contexts. Smart features could facilitate searching, update centralised data sources, and disseminate information more inclusively.

 

International Journal of Human - Computer Studies, Volume 177, September 2023, 103078

https://doi.org/10.1016/j.ijhcs.2023.103078

Embedding vital life skills into education to increase access to life opportunities

DONNELLY, Pete (Wheelchair Skills College)
September 2023

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A short talk given in the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

Difficulties experienced by children who are wheelchair users, both in use of the wheelchair and also in wider society are briefly described. The set up, and some of the associated issues in the set up,  of an organisation to teach wheelchair skills and life skills to wheelchair users is outlined. 

 

An introduction is given by Dr Tigmanshu Bhatnagar entitled "Innovation: are ecosystems ready to scale for success?"

Prevention against emerging infectious diseases: An Opportunity for Inclusive Health. Understanding the behavioural and social drivers (BeSD) of COVID-19 vaccination among persons with disabilities in Internally Displaced camps in Somalia/Somaliland

ZIVERI, Davide
ABDULLAHI, Hawaa
July 2023

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In close collaboration with the World Health Organization, Humanity & Inclusion adapted and piloted WHO’s behavioural and social drivers (BeSD) of vaccination tools to understand and analyze the perception of COVID-19 vaccines as well as the barriers and drivers of immunization among persons with disabilities in a humanitarian setting in Somalia/Somaliland. This study was funded by the Universal Health Coverage and Life Course (UHL) division of the Immunization, Vaccines and Biologicals (IVB) department of the World Health Organization, Geneva. Humanity & Inclusion also carried out a Risk Communication and Community Engagement (RCCE) project, contributing to the inquiry phase described in this report, to foster the right to health as well as access to COVID-19 vaccination in Somalia/Somaliland, funded by the Center for Disaster Philanthropy.

 

RS I FP I 44

Who is disabled? On whether the functional definition of disability targets the same individuals as the subjective definition

Judith Baart
Willem Elbers
Alice Schippers
May 2023

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With the increased attention to disability as a vulnerability criterion in the Sustainable Development Goals, international organizations and NGOs within the international development sector have started to pay explicit attention to persons with disabilities, including the collection of data on persons with disabilities. The Washington Group Short Set of Questions, which focuses on functional limitations, has been gaining popularity as an assessment tool for disability. This set of questions reflects a categorization of disability that does not necessarily correspond with subjective disability assessments, such as the yes/no question (“do you have a disability?”) which many development actors have used in their assessment tools when they collect disability data This study compares the subjective and the functional limitations assessment tools for disability to answer the question: do they identify the same individuals as persons with disabilities? Based on a survey carried out amongst persons with disabilities in Cambodia, we included both the Washington Group Short Set and a subjective question asking respondents to self-identify their disability type. We find that, although all respondents self-identified as disabled, not all respondents would be considered disabled according to the Washington Group Short Set of questions. In addition, there is little overlap between specific disability types according to a subjective classification method and the domains of functioning measured through the Washington Group methodology. Our findings affirm that categorization as abled or disabled depends on the tool used. This is important, as the assessment approach chosen by those collecting disability data can shape the design choices of policies and programs, and determine who benefits.

Training in Assistive Products (TAP)

WORLD HEALTH ORGANISATION (WHO)
November 2022

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WHO’s online Training in Assistive Products (TAP) is designed to prepare primary health and other personnel to fulfil an assistive technology role. This may include identifying people who may benefit from assistive technology; providing simple assistive products such as magnifiers and dressing aids; or referral for more complex products and other services. Appropriate to a broad range of contexts, TAP is targeted at primary health care and community workforce, as well as those providing services to people who need assistive products within other sectors. 

TAP is a practical tool to support countries to respond to the recommendations in the Global Report on Assistive Technology.

TAP includes a range of assistive products to support cognition, communication, vision, hearing, self-care, and mobility from WHO’s Priority Assistive Products List. TAP has a modular structure; personnel may select the modules that match their role and the needs of the local population. For each assistive product, an introductory and product-specific module will together cover key learning content to support the acquisition of skills to safely and effectively provide that product, through a four-step process: select, fit, use and follow up.

A Massive Open Online Course (MOOC) of the first TAP module, Introduction to Assistive Products, will run for a two-week period until 10 - 24 November 2022

 

Supporting young children with disabilities in humanitarian settings

BEILER, ROSALENGA BERMAN
ZUIDEMA, SUZANNE
BECKERLEGGE, FIONA
RODRIGUEZ GARCIA, DEBORAH MARIE
June 2022

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The rapid growth that occurs in the first years of life provides an opportunity to influence and improve developmental outcomes that may impact the entire course of an individual's life. Addressing the developmental needs of children with disabilities during this critical period is essential if they are to survive, flourish, learn, and be empowered (WHO, n.d.). 

Recognizing the importance of addressing all children's unique needs and acknowledging the influence of social stigma and misconceptions about disability that may lead to underdeveloped potential and social exclusion, we seek to advocate for and support the inclusion of young children with disabilities in Early Childhood Development in Emergencies programming. 

The webinar was moderated by Rosangela Berman Bieler, UNICEF’s Global Advisor on Disability, and included presentations on foundational concepts for disabilities-inclusive programming, and alternatives to address young children with disabilities needs in a resourceful, creative manner. 

Explosive ordnance in Syria: impact and required action

May 2022

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Explosive ordnance (EO) puts one in two people in Syria at risk of death and injury and impedes the delivery of crucial humanitarian assistance. However, the extent of EO in Syria and its devastating impact is not sufficiently known or discussed among donors and humanitarian actors. International humanitarian mine action (HMA) actors operating in Syria for over ten years have come together to address this gap, sharing data and insight from their work on the ground. They produced a report to highlight the extent of EO contamination in Syria; its devastating impact on people, vital infrastructure and provision of humanitarian assistance; the crucial activities performed by humanitarian mine action (HMA) actors; and the action required to address this issue

Global Disability Summit 2022 - Oslo, Norway

GLOBAL DISABILITY SUMMIT
February 2022

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The International Disability Alliance (IDA), the Government of Norway, and the Government of Ghana hosted the second Global Disability Summit on 16 and 17 February 2022 (GDS22). Due to the COVID-19 pandemic, and to ensure inclusive participation at the Summit, the event was held on a digital platform.

The first Global Disability Summit (GDS18), held in 2018 in London, generated an unprecedented level of focus on and commitment to disability-inclusive development. 171 national governments, multilateral agencies, donors, foundations, private sector, and civil society organisations made 968 individual commitments. More than 300 governments and organisations signed the GDS18 Charter for Change, encouraging the focused implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD).

The Global Disability Summit 2022 (GDS22) in was built on the results achieved at the first Summit, to further accelerate much-needed progress towards the fulfillment of the rights of persons with disabilities worldwide.

The Summit led to concrete commitments that brought genuine change for persons with disabilities. GDS22 gathered a total of 1413 commitments on disability inclusion.

People with disabilities want equality through access and participation. To obtain lasting change at the country level, we seek collaboration with States, multilateral organisations, and civil society. We seek action and we seek the voices of persons with disabilities themselves.

Global Disability Youth Summit and a Civil Society Forum. was also held under the auspices of the GDS22.

 

The Chair's summary, recordings of GDS22, commitments made and the program are available.

Global Disability Youth Summit 2022

GLOBAL DISABILITY SUMMIT
February 2022

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IDA, UNICEF, and the Atlas Alliance, represented by Youth Mental Health Norway, co-hosted a Youth Summit on 14 February 2022 to ensure the inclusion of youth in the Global Disability Summit. 

All planning and decision making around the Summit were led by youth with disabilities, including through the design of a novel format to ensure the participation of youth from around the globe, from local to global.

 

The Summit showcased the innovations of organizations led by youth with disabilities. Youth with disabilities at the local, regional and global levels have created groups and activities, both online and offline, fostering a sense of community, even during the COVID-19 period. Through the Summit, the youth focused on topics that they have identified to be particularly important in this regard, such as participation of youth in OPDs and youth mainstream organizations, inclusive education, deinstitutionalization and community inclusion, access to employment, climate change, new technologies, humanitarian action, access to inclusive healthcare including sexual reproductive health and mental health, among others.

 

A working group consisting of co-hosts and selected partners was responsible for developing a Youth Charter for Change - summing up and challenging the commitments

 

ICT Directory for Inclusive Education

Humanity and Inclusion
et al
December 2021

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•The ICT Directory for Inclusive Education presents Information and Communication Technologies (ICTs) that have the potential to foster the education of children with disabilities in inclusive schools.
•The ICTs are presented according to the type of difficulties they can address. These difficulties, which are defined in the Washington Group questionnaire, can affect a student’s participation in the classroom:
-Visual impairment
-Hearing impairment
-Communication difficulties
-Difficulty remembering/concentrating/learning
-Difficulty moving upper limbs
 

The Need and Desire for Inclusive Universities: A Perspective from Development Studies

THOMPSON, Stephen
July 2021

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In recent times there has been sustained momentum to address inequalities within university faculties and improve the diversity of students. Also, in response to historical and current social injustices, universities have sought to decolonize curricula. These progressive movements have had particular significance for departments focused on development studies and related subjects because the need to be inclusive is not only the right thing to do from a moral position, but also because to be exclusive is fundamentally challenging to the conceptualization and philosophy of the discipline. Development is a contested term but addressing inequality and working towards social justice are common themes found across most definitions. This commentary provides a critical insight into the importance of inclusive universities as gatekeepers to equitable knowledge production and the development of future professionals. To play their part in addressing the challenges posed by a globalized world, universities need to be proactive in ensuring that they become fully and meaningfully inclusive. While all university departments would benefit from becoming more inclusive, departments focused on development must be the pioneers leading the way, as inclusivity is relevant to the delivery of development studies, as well as emerging as an important discourse within the discipline that continues to evolve. This commentary will explore how and why in an increasingly interconnected global society, the need for universities to leave no one behind, and challenge hegemonic and unequal structures has never been greater.

Empowering Kenyan women and girls with disabilities in managing menstrual health

UNITED NATIONS POPULATION FUND (UNFPA)
June 2021

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The partnership of UNFPA with This-Ability Trust, an organization that advances disability rights and inclusion by working with groups, to improve access to sexual and reproductive health information and services for women and girls with disabilities is reported. The partnership, which has reached 12,000 people in eight counties, also educates both recipients and caregivers on menstrual health management when distributing dignity kits with washable sanitary pads. The report highlights Mombasa-based Ms. Wanjiru who runs a group for persons with disabilities that includes a programme on sexuality for young women, whose families and caregivers are often uncomfortable discussing menstrual hygiene

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

German version of the Chelsea Critical Care Physical Assessment Tool (CPAx-GE): translation, cross-cultural adaptation, validity, and reliability

EGGMANN, Sabrina
VERRA, Martin L
STEFANICKI, Valentine
KINDLER, Angela
SEYLER, Daphne
HILFIKER, Roger
SCHEFOLD, Joerg C
BASTIAENEN, Caroline H G
ZANTE, Bjoern
2021

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Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.


Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.

 

Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.

 

Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.

Design journey of an affordable manual standing wheelchair

SHAIKH-MOHAMMED, Javeed
DASH, Swostik Sourav
SARDA, Vivek
SUJATHA, S
2021

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Purpose: Only 1 in 10 people with disabilities can access assistive devices, underlining the critical need for low-cost assistive products. This paper describes the design evolution of a manual user-operated standing wheelchair (SWC), translating from prototype to product.


Methods: The SWC design has been refined over 5 years through multiple iterations based on comments from user trials. The SWC product, Arise, provides standing functionality, facile outdoor mobility, afford- ability, customisability, and is aesthetically pleasing. A one-time fitting and training ensure optimal effort for operation, correct posture, and comfortable user experience. The SWC accommodates users of differ- ent sizes and body weights (up to 110kg) and minimises user effort with the use of a gas spring. Incorporating discrete adjustments enables customisation while retaining the advantages of mass manu- facturing, which is necessary for ensuring affordability.

 

Results: The SWC has been field-tested and well received by over 100 wheelchair users, and Arise was launched recently by the industry partner.


Conclusions: It should be noted that RESNA cautions on the use of any standing device without medical consultation. Nevertheless, with appropriate dissemination and awareness, it is anticipated that the afford- able SWC product, Arise, will immensely benefit the eligible users and make a difference in their quality of life.

Inclusive information systems for social protection: Intentionally integrating gender and disability

BARCA, Valentina
HEBBAR, Madhumitha
COTE, Alexandre
SCHOEMAKER, Emrys
ENFIELD, Susan
HOLMES, Rebecca
WYLDE, Emily
March 2021

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Digital information systems serving the social protection sector, and especially social assistance, are increasingly prominent and will continue to be, as is the case within all other sectors. “Why? Because the ability of a country to care for its people and respond to their lifecycle needs depends on its ability to identify those who are in need, enroll them, provide tailored benefits and services, and follow up to cater to evolving circumstances”. Governments also need to be able to monitor programme implementation and impact, feeding into longer-term decisions on design and resource allocation. “All of these actions require accessible, dynamic and real-time data and information exchange if the goal of universal coverage is to be achieved” (Chirchir and Barca, 2019).

The coverage (% of the population included in the information system), relevance (amount/type of data they store), and accessibility (e.g. level of interoperability/data sharing across the government data ecosystem) of these administrative data systems has also been increasing in many countries – posing important opportunities and challenges to policy-makers. The question is how to develop these systems in a way that is inclusive and right-based, leveraging technology “to ensure a higher standard of living for the vulnerable and disadvantaged” (Alston, 2019) rather than becoming a further barrier to inclusion. To illustrate the point this paper specifically focuses on gender and disability inclusion, while acknowledging similar considerations apply to all other forms of (intersectional) exclusion.

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.

COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities

GURUNG, Pratima
2021

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The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations. 

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. 

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