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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. 

Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease

JOHANSSON, Inga-Lena
SAMUELSSON, Christina
MULLER, Nicole
February 2021

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Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.

 

Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.

 

Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.

 

Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

The essential checklist for disability-confident recruiters

BROWN, Simon
SCOTT-PARKER, Susan
2020

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This document translates disability-confident principles into a practical checklist for HR and recruitment specialists. The checklist works to best-practice principles. Much of this guidance goes beyond compliance with any disability discrimination legislation.

Guidance for including people with disabilities in responses to the COVID-19 pandemic. Guidance for development partners

PREGEL, Andrea
LE FANU, Guy
May 2020

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Practical guidance is provided for development partners to develop disability inclusive responses to the COVID-19 pandemic during the emergency phase of the COVID19 pandemic. In the immediate- and long-term response to the pandemic, it is vital that all development partners take steps to strengthen health systems that are disability-inclusive.

 

Topics include: intersectionality; assessing gaps and needs; engaging people with disabilities and DPO's; accessible and inclusive communications; healthcare and essential services; livelihoods and social protection; education; independent living and housing; and evidence generation.

Somalia Disability Inclusive COVID-19 WASH tip sheet

Humanity & Inclusion
April 2020

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This tip sheet provides an overview of the factors that may put persons with disabilities at heightened risk in the COVID-19 pandemic and response in humanitarian settings; and proposes actions to address these risks within the COVID WASH response.

Somalia Disability Inclusive COVID-19 health tip sheet

Humanity & Inclusion
April 2020

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This tip sheet provides an overview of the factors that may put persons with disabilities at heightened risk in the COVID-19 pandemic and response in humanitarian settings; and recommends actions to address these risks within your COVID health response. This note draws on actionable and evidenced recommendations from the IASC Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action, health chapter applying these to the COVID-19 pandemic, the WHO guidance for Disability inclusion in COVID-19 response, SODEN Statement on how COVID-19 is affecting persons with disabilities in Somalia and the practical field experience of HI and collaborating partners in Somalia.

Interim Guidance: Scaling-up COVID-19 outbreak readiness and response operations in humanitarian situations. Including camps and camp-like settings Version 1.1

IFRC
IOM
UNHCR
WHO
April 2020

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It is of extreme importance from a protection, human-rights and public health perspectives, that people affected by humanitarian crises are included in all COVID-19 outbreak readiness and response strategies, plan and operations. There is a strong public health rationale to extend all measures to everyone, regardless of status and ensuring inclusiveness. This Interim Guidance addresses specific needs and considerations required in humanitarian situations, including camps and camp-like settings and the surrounding host communities, in scaling-up readiness and response operations for the COVID-19 outbreak through effective multi-sectoral partnership

Reaching persons with deafblindness during the Covid-19 pandemic

INTERNATIONAL DISABILITY ALLIANCE (IDA)
April 2020

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People with deafblindness are concerned about having a barrier to access information about the COVID-19 pandemic. Geir Jensen, a man with deafblindness and the President of the World Federation of the Deafblind (WFDB) living in Norway, shares the challenges that he faces. Despite Norway having inclusive policies and high-quality support services for deafblind persons, the COVID-19 pandemic has caused many challenges for them

 

This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series

COVID-19: How to include marginalized and vulnerable people in risk communication and community engagement

UN WOMEN
TRANSLATORS WITHOUT BORDERS
March 2020

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Recommendations for inclusion of marginalised and vulnerable groups in risk communications and community engangement are made. Groups considered are: children; people with disabilities; women and girls; pregnant women; persons living with HIV; gender based violence survivors; refugees and migrants; elderly; people in existing humanitarian emergencies; people with pre-existing medical conditions; sexual and gender minorities; ethnic minorities.

Participation in Practice: Examples of inclusive action for a “Participation Revolution”

March 2020

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Humanitarian organizations and donors have committed to change the way humanitarian action is carried out and create a “Participation Revolution.” In this webinar issues addressed included:

  • inclusion of the people and communities affected by humanitarian crises in practice;
  • how organizations are ensuring that the voices of the most vulnerable groups considering gender, age, ethnicity, language, and special needs are heard and acted upon;
  • how program activities and budgets are designed to support the changes that affected people demand


In this webinar, organized on 26 March 2020 by PHAP and the Steering Committee for Humanitarian Response, we took stock of the progress to date on workstream six of the Grand Bargain and heard success stories from the field that can help agencies achieve a sustained change in how they design and deliver their programs.

 

A full transcript is available. Webinar registrants were asked to provide what they thought, in their context, was the most important factor enabling participation in practice and what they thought was the most important factor preventing participation in practice. Answers are provided in an Annex.

COVID 19 disability inclusion emergency response: by the albino foundation, disability inclusion Nigeria

March 2020

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In order to reduce the spread and impact of COVID 19 on persons with disabilities globally, The Albino Foundation-DISABILITY INCLUSION NIGERIA PROJECT in alignment with the recommendations of International Disability Alliance (IDA) has come up with simple steps to mitigating the virus within this vulnerable population. The basic measures includes:

1.0 Persons with disabilities

2.0 Government

3.0 Members of the public

National call to action: COVID-19

MOYAWID
March 2020

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A coalition of disability rights and emergency management experts from across the USA issued an urgent call to action for immediate strategies and solutions from the federal government and governments at every level, including local, state, tribal and territorial, to address the specific needs of persons with disabilities throughout the COVID-19 outbreak and all public health emergencies.

COVID-19 Communication Rights Toolkit

2020

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This toolkit: (1) explains your communication rights; (2) provides tips on advocating for them, and (3) has an accommodation request form you can bring to the hospital.

 

United States version.

A conceptual framework for designing Ambient assisted living services for individuals with disabilities in Uganda and South Africa

KYAZZE, Michael
WESSON, Janet
NAUDE, Kevin
August 2019

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Background: Individuals with disabilities experience difficulty in using various everyday technologies such as computers and smartphones.

 

Objectives: To propose a conceptual framework that will lead to the development of practical and user friendly assistive technology.

 

Method: A literature review of challenges faced by individuals with physical disabilities was carried out. Interviews with adults with physical disabilities in Kampala, Uganda, and Port Elizabeth, South Africa, identified three main challenges with regard to using technology: using a mobile phone, controlling an electronic environment and using a computer.

 

Results: The challenges identified can be solved by taking into consideration the needs of individuals with disabilities. However, the design of new technologies and interaction techniques, such as natural hand gestures and voice, as input mechanisms has able-bodied individuals in mind. Individuals with disabilities are considered as an afterthought. The main reason for this is that individuals with a disability are a minority and hence it may not make economic sense for technology innovators to cater for their unique needs. A lack of practical guidelines on how to design for individuals with disabilities is another reason why designing for individuals with disabilities is often an afterthought.

 

Conclusion: This article proposes a conceptual framework that can be used by researchers and technology designers in order to design products that could cater for the unique needs of individuals with disabilities. The article also emphasises the importance of exploring alternative interaction techniques, as they could enable individuals with disabilities to fully utilise technologies such as smart phones, computers and smart home electronics.

 

 

African Journal of Disability, Vol 8, 2019

Assistive technology enables inclusion in higher education: The role of Higher and Further Education Disability Services Association

LYNER-CLEOPHAS, Marcia
August 2019

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Background: Using assistive technology is one way to foster inclusion of students in the post-school education and training (PSET) sector.

 

Objectives: Higher and Further Education Disability Services Association (HEDSA) enables the sharing of new knowledge about assistive technologies through its symposia, and making information available on its website. Additionally, it facilitates dialogue and collaboration amongst institutions in the PSET network using a listserv and newsletters, given that PSET institutions are spread countrywide.

 

Method: This is an article based on a presentation at the 5th African Network of Evidence-to-Action in Disability (AfriNEAD) conference in Ghana in 2017 that focused on the value of assistive technology for students pursuing studies in the PSET sector and the role played by HEDSA in South Africa.

 

Results: The positive gains and existing gaps in disability inclusion in the higher education sector in South Africa are highlighted, with reference to access to technology. All higher education institutions have internet access and can thereby make use of listservs to communicate information. MapAbility is a way that prospective students can gain a snapshot view of available resources at institutions of learning, using the internet.

 

Conclusion: An association such as HEDSA plays a critical role in the PSET sector to enhance disability inclusion using online tools to disseminate information.

 

 

African Journal of Disability, Vol 8, 2019

Multilingualism and augmentative and alternative communication in South Africa – Exploring the views of persons with complex communication needs

TONSING, Kerstin M.
Van NIEKERK, Karin
SCHLUNZ, Georg
WILKEN, Ilana
2019

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Background: Augmentative and alternative communication (AAC) can assist persons with complex communication needs to communicate competently with a variety of communication partners in a variety of contexts. However, AAC systems and intervention often do not take multilingual aspects into consideration.

 

Objective: This small-scale exploratory study had three aims, namely: (1) to describe the self-reported language skills of multilingual South African adults using AAC, (2) to describe the languages and communication modalities they used in interaction and (3) to obtain their views regarding access to various languages.

 

Methods: Twenty-seven adults using AAC were recruited via an empowerment programme, as well as an email list for persons interested in AAC, and provided responses to a questionnaire. To compensate for access and written language challenges, the questionnaire was administered with help and/or as a face-to-face interview where needed. Responses were analysed using mostly descriptive statistics.

 

Results: Participants generally could not express themselves in all the languages they understood and were regularly exposed to. Speech-generating devices specifically gave access almost exclusively to English. Participants expressed a desire to increase their expressive language repertoire, and mentioned both limitations of communication technology as well as their own literacy skills as barriers to overcome in this regard.

 

Conclusion: In order for multilingual South African adults using AAC to express themselves in multiple languages, appropriate AAC systems and interventions as well as literacy learning opportunities need to be developed and provided.

 

African Journal of Disability, Vol 8, 2019

Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

Participation Restriction due to Arm and Leg Motor Impairment after Stroke Rehabilitation in the Tamale Metropolitan Area, Ghana

TWUM, Frank
DOGBE, Joslin Alexander
EDUSEI, Anthony Kwaku
AMPRATWUM, Joseph
2018

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Purpose: The study was conducted to examine the relationship between arm and leg motor impairment in stroke survivors and participation restriction, post rehabilitation, within the Tamale metropolis.

 

Method: The participants were 102 stroke survivors from the Tamale metropolitan area, who had undergone at least 3 months of rehabilitation. Upper limb motor assessment was followed by lower limb motor assessment based on the Manual Muscle Test. Levels of participation restriction were measured using the London Handicap Scale. Correlation analysis of motor impairment and participation restriction were done using Spearman rank correlation analysis.

 

Results: The mean age of post-stroke participants was 62.08 years (95% CI= 59.77-64.39), with men comprising 67.65% and 32.35% women. The Spearman rank correlation co-efficient between arm motor impairment and participation was 0.8343, depicting a strong positive relationship between the aforementioned variables. The correlation between leg motor impairment and participation yielded 0.8013. Conversely, leg motor impairment was found to have a stronger relationship with participation restriction in comparison to arm motor impairment.

 

Conclusion and Implications: The strong relationship between limb motor impairment and participation restriction suggests that clinicians and disability experts involved in rehabilitation should take cognisance of the social implication of motor impairment in order to make informed decisions. Further to this, arm and leg assistive devices could be useful in reducing the levels of participation restriction among persons with stroke within the Tamale metropolis.

 

Limitations: A major limitation is that motor impairment was assessed solely on the ability to perform voluntary movement (muscle power). Sensory disturbances and motor coordination difficulties also have the potential to influence participation restriction, so the exclusion of stroke survivors who are unable to communicate implies that external validity of the research is limited.

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