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A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

Disability and Indigeneity: intersectionality of identity from the experience of Indigenous people at a global level

GILROY, John
UTTJEK, Margaretha
LOVERN, Lavonna
WARD, John
2021

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The authors of this paper have protested, fought, written extensively and represent the broader theoretical foundations of Indigenous and disability research by focusing on their standpoint perspectives informed by their ancestral spirits and knowledge. Based on our knowledge, cultures, and advocacy skills, this paper collectively explores and compares the intersections of Indigeneity and disability as an embodied identity in four countries: USA, Canada, Sweden, and Australia. This is accomplished by beginning with a brief synopsis of colonization to provide context and then examine the consequences of Western assimilation practices, including academic support of the Western status quo. The paper will then turn to the impact of both colonization and academic constructs on Indigenous epistemologies and ideas of self in disability dialogues. Finally, the paper will focus on Indigenous concepts of difference to not only advance Western disability discussions, but also as a way for Western dialogue to overcome its predilection to hierarchical binaries.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

Family Planning for Women and Girls with Disabilities

Dr FRASER, Erika
CORBY, Nick
MEANEY-DAVIS, Jessie
2021

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This is an updated evidence review looking at the evidence on factors affecting access to and uptake of family planning for women and girls with disabilities in low- and middle-income countries and the evidence on good practice on increasing full free and informed contraceptive choice for women and girls with disabilities.

 

Query:

1) What is the evidence on factors affecting access to and uptake of family planning for women and girls with disabilities in low and middle income countries, highlighting examples from FP2020 commitment-making countries?

2) What is the evidence on good practice on increasing full free and informed contraceptive choice for women and girls with disabilities – from the same countries or elsewhere? 

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

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. 

COVID-19 and State Responses in Pakistan’s Policy towards Persons with Disabilities

ORAKZAI, Saira Bano
2021

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The outbreak of COVID-19 has initiated debate in the world about the response mechanism towards different communities in society. Pandemics have a long history in human societies, changing not only human behavior but also world politics. The Russian flu of 1889, the Spanish flu of 1918, the polio pandemic of 1949, H2N2 virus, 1956, HIV/AIDS 1981, Swine flu 2001, SARS 2002 among others have caused millions of deaths in contemporary recorded history. This paper examines Pakistan’s response mechanisms for persons with disabilities through an analysis of relevant policy documents, UN guidelines and content analysis of key speeches by the Prime Minister Imran Khan, interviews and initiatives taken by the government. The paper concludes that in the absence of any definitive policy for persons with disabilities during COVID19, there has been a general ignorance and apathy towards the way persons with disabilities were given care or in dealing with them during the lockdown situation. As the COVID-19 second wave started in different parts of the world, it is time for the government to take substantive measures to ease problems faced by persons with disabilities. 

COVID-19 from the margins: Gendered-Disability experiences in Sri Lanka

KANDASAMY, Niro
PERERA, Binendri
SOLDATIC, Karen
2021

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Recent research in the global South has highlighted that persons with disabilities are a vulnerable category of persons during the COVID19 outbreak. This paper provides some preliminary insights into Sri Lankan government responses to the outbreak, which, as we will be highlighting, take an ableist approach that further neglect the interests of persons with disabilities while entrenching disability dependencies on informal structures of familial and household support and in turn, increasing their marginality and economic insecurity. The COVID-19 outbreak hit Sri Lanka during a period of political turmoil – national Parliament had been dissolved on 3 March 2020 with elections initially called for 25 April 2020, six months prior to the official end of the Government’s elected term. Drawing upon rapid interview narratives, we present the lived experiences of two women with disabilities and the unique challenges they are facing during the COVID-19 pandemic. As we write this paper in September 2020, we acknowledge that the longer-term impacts of COVID-19 will not become immediately visible, particularly for disabled people from ethno-religious minority groups, including those residing within the former conflict zones.

Invisible to the Law: COVID-19 and the legal consciousness of persons with disabilities in Bangladesh

MIZAN, Arpeeta Shams
2021

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Despite disability rights being recognized through formal legislation in Bangladesh, the rights of persons with disabilities are still not effectively ensured. State interventions during the pandemic have not sufficiently accommodated the rights of Persons with Disabilities. Pre-existing social prejudices have added to their plight. Due to social prejudice and myriad access to justice challenges, persons with disabilities in Bangladesh face negative attitudes when it comes to exercising their legal rights. The article uses primary data obtained through qualitative interviews and secondary sources to illustrate how the Covid19 pandemic has reinforced structural discriminations and increased the vulnerability of persons with disabilities

Barriers to Utilisation of Dental Services among Children with Disabilities in a Coordinated Healthcare Programme in Mangalore, South India: A Mixed Methods Study

SURESH, L R
RAI, K
HEGDE, A M
DSOUZA, C V
2021

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Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India’s diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India.

 

Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy.

 

Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children’s caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children.

 

Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs.

Employers' Attitudes and Hiring Intentions towards Persons with Disabilities in Hotels

PIRAMANAYAGAM, S
SEAL, P P
2021

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Purpose: The hospitality industry is labour intensive. Currently, in India, hotels have a high employee attrition rate. This study aimed to explore the attitudes of hotel managers towards recruiting persons with disabilities as employees, a move which could benefit all concerned.

 

Method: A structured survey instrument was sent to 31 employers in star category hotels.

 

Results: Employers’ attitudes have a significant influence on the recruitment of persons with disabilities. While the intention to hire persons with disabilities is positively associated with quality of work, loyalty, and dependability, it can also be negatively associated with lack of skill, work experience, poor time management and absenteeism.

 

Conclusion: It is concluded that employers hire person with disabilities to work in hotels as they are more reliable and loyal towards the organisation. This attitude from the side of employees with disabilities will also help to overcome the problem of high employee attrition that has a deleterious effect on profitability in the service industry.

 

Limitation: The data is collected from hotels in a single city, which may limit the generalisation of the findings.

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

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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.

Insisting on inclusion: Institutionalisation and barriers to education for children with disabilities in Kyrgyzstan

MILLS, Laura
December 2020

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Since 2012, the Kyrgyz government has pledged to close 17 residential institutions for children, including three for children with disabilities. But 3,000 children with disabilities remain in institutions.

This report is based on in-person visits to six institutions for children with disabilities and 111 interviews with children with disabilities, their parents, institution staff, and experts in four regions of Kyrgyzstan. It describes abuses in state care as well as barriers to education that often lead to a child’s segregation in a residential institution or special school, or their isolation at home.

 

 

Disclosure of Disease among Women affected by Leprosy: A Qualitative Study

Ramasamy, Senthilkumar
Govindharaj, Pitchaimani
Kumar, Archana
Panneerselvam, Suganya
2020

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Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.

 

Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.

 

Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.

 

Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.

Do both ‘get it right’? Inclusion of newly arrived migrant students in Swedish primary schools

TAJIC, Denis
BUNAR, Nihad
2020

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The aim of this article is to advance knowledge on how Swedish primary schools organise education and what strategies they deploy to ensure inclusion and attainment of newly arrived migrant students. The article is based on semi-structured interviews with 30 teachers and school administrators, and one-year of fieldwork undertaken in two multicultural urban primary schools in the Stockholm region. One of the schools initially places students in separate classes, while the other one places them directly into mainstream classes. Both are evoking inclusion and attainment as a reason for using their respective models. As such, do both ‘get it right’? Using inclusion as the theoretical and conceptual framework this article addresses the broader question: How is the meaning of inclusion constructed in the processes of its practical implementation in these two schools? The results show the ambitious tale of inclusion in both schools was, in the process of the construction of its meaning and implementation, reduced to some of its aspects. Teachers and school administrators are allowed to include or leave out of their model whatever they deem necessary, obsolete, expensive or unrealistic and still fitting under the umbrella of inclusion. Sometimes it works, sometimes it does not, and both schools ‘get it right’ and ‘wrong’ in some aspects.

Teaching for inclusion – a review of research on the cooperation between regular teachers and special educators in the work with students in need of special support

PAULSRUD, David
NILHOLM, Claes
2020

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This article presents a review of qualitative research on interprofessional cooperation between regular teachers and special educators published from 2005 to 2019. The aim of the review was to gain knowledge about how different forms of cooperation take shape and about factors at multiple levels that facilitate or constrain cooperation as a means of achieving inclusion. In total, 25 studies were selected. The results are discussed in relation to Thomas Skrtic’s theory of bureaucracies within the school organisation in order to compare and analyse different forms of interprofessional cooperation and schools’ organisations of special educational work. Cooperative teaching, special educational consultations and mixed forms of cooperation were found to entail different benefits and challenges related to communication and the cooperating actors’ roles. Facilitating factors included personal chemistry, an equal distribution of power and responsibilities and support from the school management through provision of professional development and adequate planning time. In several studies, a flexible cooperation was argued to be hindered by curricular constraints and standardised testing. Education policy is therefore emphasised in this review as important for understanding the conditions under which school staff are responsible for inclusion.

Life Accomplishment, Social Functioning and Participation of South-Eastern Nigerians with Lower Limb Amputation

Akosile, Olusanjo Christopher
Okonkwo, Arinze Christian
Maruf, Adesina Fatai
Okoye, Chiebuka Emmanuel
2020

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Purpose: For a better understanding of the possible impact of impairments and disabilities on the life of individuals with lower limb amputation,it is important to explore the levels of Life Accomplishment (LA), Social Functioning and Participation (SFP) among them.The present study, set in South-Eastern Nigeria, aimed to study these levels and the influence of selected clinical and demographic variables on these constructs.

 

Method: This cross-sectional survey involved 60 individuals with lower limb amputation (46 unilateral, 14 bilateral) recruited from all the five South-Eastern Nigerian States. The Social Functioning Questionnaire (SFQ), Participation Scale and Life Habit Questionnaire were used for measuring levels of social functioning, social participation and life accomplishment, respectively. Data was analysed using descriptive statistics of frequency count, percentages, mean and standard deviation. Mann-Whitney U and Kruskal-Wallis tests were used to test the hypotheses. Alpha level was set at 0.05.

 

Results: Most of the participants (51.7%-58.3%) had low levels of social functioning across SFQ domains. Most of them (61.7%) had severe participation restrictions, and they all had reduced life accomplishments. Participants with bilateral amputation had poorer levels of social functioning (P<0.0001), participation restriction (P<0.0001), and life habits accomplishment (P<0.0001) than their counterparts with unilateral amputation. Individuals with below-knee amputation had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with above-knee amputation. Participants with prosthetic mobility aids had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with no prosthetic mobility aids. There was no significant difference in the levels of social functioning and participation between male and female participants, but female participants had statistically significant (P<0.0001) higher scores in nine out of twelve life habit domains than their male counterparts.

 

Conclusion and Implications: Low social functioning, severe participation restrictions, and reduced life accomplishments were prevalent among individuals with lower limb amputation, particularly amongthose with bilateral and above- knee amputations. There is a need to routinely evaluate the studied constructs among individuals with lower limb amputation. The provision of prosthetic aids may help to improve their levels of life accomplishment, social functioning and participation.

Teachers’ Attitudes towards Inclusion of Blind or Partially-Sighted Students in Secondary Schools in Nigeria

Ajuwon, Paul M
Chitiyo, George
Onuigbo, Liziana N
Ahon, Adaka T
Olayi, James E
2020

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Purpose: This study investigated the attitudes of secondary school teachers towards students with blindness or partial sight in selected states in Nigeria.

 

Method: The authors utilised the modified version of a previous instrument to collect data from 306 secondary school teachers in Nigeria. Six basic questions were established to address: respondents’ attitudes towards inclusion; training acquired related to teaching; knowledge pertaining to policy and legislation; confidence levels to teach students with disabilities.; impact of geographical location; and differences in attitudes by the variables of subject(s) taught, school level taught, and years of teaching experience.

 

Results: Attitudes of participants were mixed but were generally positive. The level of training was low, with teachers showing limited knowledge of policy and legislation. A little over a quarter (27%) of them lacked confidence in teaching. There were differences in attitudes related to the geographical location of respondents. Those who taught at the senior secondary school level tended to have higher attitude scores on average than their counterparts at the junior secondary school level.

 

Conclusion and Limitations: This study used self-report measures, although observations and interviews could be additional ways to evaluate the attitudes of participants throughout the country. Moreover, in-service programmes may need to be implemented to increase teachers’ knowledge base and expand their experiences in line with established policies and legislation.

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Burkina Faso

Humanity & Inclusion
2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

Être une fille et handicapée en Afrique de l’Ouest : La situation éducative en question : etude pays - Niger

Humanity & Inclusion
2020

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Questions de recherche

1 / Dans quelle mesure le handicap — en interrelation avec le genre — influence-t-il les parcours de scolarisation des filles handicapées?

2 / Quelles spécificités liées aux types et au degré de handicap (physique, visuel, auditif, intellectuel) peuvent être observées?

3 / Quelles sont les spécificités liées à l’âge des filles handicapées?

4 / A quels enjeux, notamment en matière de protection de l’enfance, les jeunes filles handicapées sont-elle exposées ?

5 / Quelles spécificités contextuelles émergent dans les trois pays, objet de l’étude et dans les différents terrains d’étude?

6 / Quel rôle joue la religion et les croyances populaires dans l’accentuation des discriminations à l’égard des filles handicapées?

7 / Quels éléments facilitateurs (familiaux/communautaires/institutionnels/politiques/etc.) pour l’éducation des filles handicapées pourraient être identifiés dans les différentes zones d’étude?

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