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How to talk to kids about disability inclusion

NANYENYA, Godfrey
April 2021

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Godfrey Nanyenya's work as a disability and inclusion specialist, involves community outreaches in the slum communities of Kampala engaging families raising children with disabilities in physiotherapy and inclusive home schooling. He encourages parents to talk to their children about disability as a normal topic. He suggests ways to approach the subject including: 

  • normalise disability
  • be mindful of language
  • keep it value neutral
  • don't shame them for their questions
  • say I don't know
  • point out similarities
  • make it a continuous conversation

The effective engagement toolkit

LEONARD CHESHIRE
March 2021

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The engagement toolkit is a practical resource guide for anyone committed to ensuring the voice of disabled people is front and centre of their work.

Starting with influencing approaches on policy, campaigning and public affairs engagement, the toolkit provides:

• Step by step guidance on entry points for developing productive and mutually beneficial relationships with the disability community.
• Quick guides on key disability movement context, approaches and best practice
• A breakdown of key elements of the Influencing Cycle.
• Examples of where good practice has worked well.
• Links to in-depth information for further learning.

The invisible minority: why do textbook authors avoid people with disabilities in their books?

JENSEN, Magne Skibsted
HERREBRØDEN, Marte
ANDREASSEN, Ulf Rune
2021

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Representation of disability in school textbooks may influence pupils’ knowledge and perceptions of people with disabilities. The aim of this study was to investigate representation of people with disabilities in school textbooks. The study employed a mixed-methods approach. Quantitative frequency analysis was used to investigate the extent of representation of disabilities in texts and pictures in 78 Norwegian textbooks for Grades 5–10. Regarding texts, the results showed that people with disabilities were represented in less than half of these textbooks (49%). Concerning pictures, people with disabilities were even less represented, appearing in only 29% of the textbooks. These quantitative findings were supplemented by a qualitative survey of textbook authors, who were asked to explain the marked absence of disability references in their own books and in school textbooks in general. The two most frequent explanations were that textbook authors had either overlooked people with disabilities, or that the Norwegian National Curriculum (Kunnskapsdepartementet 2006. Lærerplanverket for Kunnskapsløftet (LK06) [The Norwegian National Curriculum]. https://www.udir.no/lk20/overordnet-del/) did not explicitly mention this minority. We discuss these explanations as expressions of conscious considerations rather than unconscious omissions.

Philosophy, disability and social change conference (9-11 Dec 2020)

December 2020

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The Philosophy, Disability and Social Change online conference comprises presentations by disabled philosophers whose cutting-edge research challenges members of the philosophical community to:

  1. think more critically about the metaphysical and epistemological status of disability;
  2. closely examine how philosophy of disability is related to the tradition and discipline of philosophy;
  3. acknowledge the continuing exclusion of disabled philosophers from the profession of philosophy;
  4. seriously consider how philosophy and philosophers contribute to the pervasive inequality and subordination that disabled people confront throughout society;
  5. develop mechanisms designed to transform the current professional and institutional position of disabled philosophers in particular and the economic, political and social position of disabled people more generally.

The presentations will highlight the diversity and range of approaches to critical philosophical work on disability and showcase the heterogeneity with respect to race, gender, nationality, sexuality, gender identity, culture, age and class of the community of disabled philosophers.

This conference is organised as part of the Alfred Landecker Programme at the Blavatnik School of Government.

Session titles: 

  • Unmaking disability: Philosophy and social change
  • African communitarian philosophy and disability in African contexts
  • Dis/ableist inheritance
  • Ageism, ableism and the power of the double bind
  • Philosophy, the apparatus of disability, and the nursing-home industrial complex
  • Neurodiversity and the pathology paradigm
  • A neurodiversity paradigm for moral responsibility
  • Cheap talk: Stuttering, trolls and talking heads
  • Vulnerability to COVID-19 and the moral perniciousness of congregate care
  • Captivity, carceral logics, and disposability
  • Chronic fatigue as adversity under capitalism
  • Phenomenologies of debilitation and questions of volition
  • 'He's not worth it': The deleterious character of the disabled Black male
  • COVID-19 as crisis
  • Risking ourselves: The politics and persons of risk

Accessible to All: Creating learning materials for children with disabilities in Cambodia, Kenya, Rwanda, and Tajikistan

EducationLinks
December 2020

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Examples are outlined of how good practices in the provision of accessible learning materials are being put into practice by USAID in partnership with organisations addressing the education needs of students with disabilities:

  • Expanding access through Universal Design for Learning in Cambodia: All Children Reading
  • Applying a user-centered design approach in Kenya: eKitabu and Deaf-led Sign Language Video Stories
  • Promoting sustainable accessible standards in Rwanda: Soma Umenye
  • Supporting underserved languages in accessible formats: The Global Digital Library
  • Fostering parental involvement in Tajikistan: USAID Read with Me

 

"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

BOTHA, Monique
DIBB, Bridget
FROST, David M
2020

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N1⁄420) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understand- ings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure stra- tegically. The implications of these findings are discussed further in the article.

Disability, deadly discourse, and collectivity amid Coronavirus (COVID-19)

ABRAMS, Thomas
ABBOTT, David
June 2020

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As COVID-19 crosses the globe, disabled people are subject to new medical and discursive realities. Focusing on the consequences of the latter, we utilize news reports from Canada and the UK to argue the current language of pre-existing conditions represents disability as non-life, explaining away the material realities facing disabled persons. This language ignores the distribution of care work in our societies, poverty, and other forms of exclusion facing disabled people and the population more generally. Work on ventilator users points to these existing inequalities, obscured as they may be. This story is not new. Outlining existing narratives within disability studies challenging disability as deadly biological and economic deficiency and situating the ‘pre-existing’ terminology therein, we look to work in disability studies and bioethics to challenge the disability–death equation. We end reviewing counter-narratives by and for disabled people, highlighting the ongoing and life-affirming resistance throughout the disability rights movement.

 

Scandinavian Journal of Disability Research, 22(1), pp.168–174.

DOI: http://doi.org/10.16993/sjdr.732

Teachers talk on student needs: exploring how teacher beliefs challenge inclusive education in a Norwegian context

AAS, Hanne Kristin
2019

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This study explores teacher talk in the early phase of a project in a Norwegian elementary school where Lesson Study is used as a method for professional development. The study focuses on inclusion and aims to explore what beliefs about student needs and teacher role and responsibilities become evident, and how these beliefs can challenge development towards a more inclusive practice. To this end, content analysis is applied to audio recordings of teacher teams’ planning meetings. Despite an overall positive attitude towards inclusion, and inclusive structures in the school, findings point at factors in teachers’ beliefs that can challenge the inclusion process. These factors are: student needs understood as individual problems, adaptation understood as individualised and laborious and a limited view on teacher role, where their responsibility mainly regard academic learning.

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

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Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

Exploring the concerns of persons with disabilities in Western Zambia

CLEAVER, Shaun
POLATAJKO, Helene
BOND, Virginia
MAGALHÃES, Lilian
NIXON, Stephanie
2018

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Background: Understandings of disability are rooted in contexts. Despite the world’s significant contextual diversity, postcolonial power dynamics allow influential actors from the global North to imagine that most people across the global South understand disability in one generalised way. When it informs programmes and services for persons with disabilities in the global South, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed.

 

Objectives: In the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in Western Zambia.

 

Method: In this qualitative constructionist study, data collection focused upon life with a disability and servicesavailable to persons with disabilities. Data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. Data were analysed thematically.

 

Results: The participants’ main expressed concern was poverty. This concern was articulated in terms of a life of suffering and a need for material resources. Participants linked poverty to disability in two ways. Some participants identified how impairments limited resource acquisition, resulting in suffering. Others considered poverty to be an integral part of the experience of disability.

 

Conclusion: This study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. The study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context.

Hearing children of Deaf parents: Gender and birth order in the delegation of the interpreter role in culturally Deaf families

MOROE, Nomfundo F.
ANDRADE, Victor de
2018

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Background: Culturally, hearing children born to Deaf parents may have to mediate two different positions within the hearing and Deaf cultures. However, there appears to be little written about the experiences of hearing children born to Deaf parents in the South African context.

 

Objective: This study sought to investigate the roles of children of Deaf adults (CODAs) as interpreters in Deaf-parented families, more specifically, the influence of gender and birth order in language brokering.

 

Method: Two male and eight female participants between the ages of 21 and 40 years were recruited through purposive and snowball sampling strategies. A qualitative design was employed and data were collected using a semi-structured, open-ended interview format. Themes which emerged were analysed using thematic analysis.

 

Results: The findings indicated that there was no formal assignment of the interpreter role; however, female children tended to assume the role of interpreter more often than the male children. Also, it appeared as though the older children shifted the responsibility for interpreting to younger siblings. The participants in this study indicated that they interpreted in situations where they felt they were not developmentally or emotionally ready, or in situations which they felt were better suited for older siblings or for siblings of another gender.

 

Conclusion: This study highlights a need for the formalisation of interpreting services for Deaf people in South Africa in the form of professional interpreters rather than the reliance on hearing children as interpreters in order to mediate between Deaf and hearing cultures.

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

‘Civilising’ Deaf people in Tibet and Inner Mongolia: governing linguistic, ethnic and bodily difference in China

HOFER, Theresia
SAGLI, Gry
2017

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The People’s Republic of China is home to over 20 million d/Deaf and hard-of-hearing people, many among them belonging to ethnic minorities. Drawing on ethnographic fieldwork in two minority regions, the Tibet Autonomous Region and the Inner Mongolian Autonomous Region, this article comparatively discusses findings on sign language use, education and state welfare policies. The situation in these domains is analysed through the framework of the ‘civilising project’, coined by Harrell, and its impacts on the d/Deaf and hard-of-hearing among ethnic minorities are shown. For instance, through the promotion of Chinese and Chinese Sign Language over and above the use of local sign and written languages as well as through education and the medicalisation of disabilities.

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

KRAMER-ROY, Debbie
2015

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Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be par- ticularly hard for people living with multiple disadvantage, such as disabled peo- ple from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participa- tory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these meth- ods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

BROCCO, Giorgio
2015

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This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.

Challenging perceptions of disability through performance poetry methods: the ‘Seen but Seldom Heard’ project

HODGES, Caroline E M
FENGE, Lee-Ann
CUTTS, Wendy
2014

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This paper considers performance poetry as a method to explore lived experiences of disability. We discuss how poetic inquiry used within a participatory arts-based research framework can enable young people to collectively question society’s attitudes and actions towards disability. Poetry will be considered as a means to develop a more accessible and effective arena in which young people with direct experience of disability can be empowered to develop new skills that enable them to tell their own stories. Discussion of how this can challenge audiences to critically reflect upon their own perceptions of disability will also be developed.

Recognising the agency of people with dementia

BOYLE, Geraldine
May 2014

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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

Disability and masculinity in South African autosomatography

LIPENGA, Ken J
2014

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This article examines the representation of disability by disabled black South African men as portrayed in two texts from the autosomatography genre, which encompasses first-person narratives of illness and disability. Drawing on extracts from Musa E. Zulu’s The language of me and William Zulu’s Spring will come, the article argues that physical disability affects heteronormative concepts of masculinity by altering the body, which is the primary referent for the construction and performance of hegemonic masculinity. In ableist contexts, the male disabled body may be accorded labels of asexuality. This article therefore reveals how male characters with disabilities reconstruct the male self by both reintegrating themselves within the dominant grid of masculinity and reformulating some of the tenets of hegemonic masculinity.

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