Experiences Of Disabled People Research Articles

Promotion of Communication Access, Choice, and Agency for Autistic Students.

Families and professionals often consider augmentative and alternative communication (AAC) a "last resort" for persons with communication challenges; however, speaking autistic adults have reported that they would have benefited from access to AAC as children. This tutorial discusses the history of this "last resort" practice and its perpetuation within the medical model of disability. The tutorial focuses on communication access, choice, and agency for autistic students. We provide a brief overview of the AAC community and their preferred terminology, review the history of traditional approaches to research on AAC and autism, and then examine the relationship between disability models and ableism to views of spoken language as a priority of intervention. Studies on this topic are rare, and resisting ableism requires acknowledging and honoring disabled people's experiences and expertise. Therefore, we promote autistic expertise within the framework of evidence-based practice and discuss the experiences of autistic people and spoken language. Finally, we consider the role of the speech-language pathologist (SLP) in assessment and offer autistic-based strategies and recommendations for communication support. Speaking autistic students who could benefit from AAC may not have access to AAC due to the prioritization of spoken language and lack of awareness of the benefit of AAC. We recommend that SLPs and school-based professionals support and facilitate access, communicative choice, and agency by implementing multimodal communication strategies to include AAC use for autistic students regardless of their spoken language status. Promoting all types of communication and ensuring opportunities for communication across multiple modalities are paramount to a child's agency and self-determination, as is normalization of AAC.

Flourishing together: research protocol for developing methods to better include disabled people’s knowledge in health policy development

BackgroundTo positively impact the social determinants of health, disabled people need to contribute to policy planning and programme development. However, they report barriers to engaging meaningfully in consultation processes. Additionally, their recommendations may not be articulated in ways that policy planners can readily use. This gap contributes to health outcome inequities. Participatory co-production methods have the potential to improve policy responsiveness. This research will use innovative methods to generate tools for co-producing knowledge in health-related policy areas, empowering disabled people to articulate experience, expertise and insights promoting equitable health policy and programme development within Aotearoa New Zealand. To develop these methods, as an exemplar, we will partner with both tāngata whaikaha Māori and disabled people to co-produce policy recommendations around housing and home (kāinga)—developing a nuanced understanding of the contexts in which disabled people can access and maintain kāinga meeting their needs and aspirations.MethodsParticipatory co-production methods with disabled people, embedded within a realist methodological approach, will develop theories on how best to co-produce and effectively articulate knowledge to address equitable health-related policy and programme development—considering what works for whom under what conditions. Theory-building workshops (Phase 1) and qualitative surveys (Phase 2) will explore contexts and resources (i.e., at individual, social and environmental levels) supporting them to access and maintain kāinga that best meets their needs and aspirations. In Phase 3, a realist review with embedded co-production workshops will synthesise evidence and co-produce knowledge from published literature and non-published reports. Finally, in Phase 4, co-produced knowledge from all phases will be synthesised to develop two key research outputs: housing policy recommendations and innovative co-production methods and tools empowering disabled people to create, synthesise and articulate knowledge to planners of health-related policy.DiscussionThis research will develop participatory co-production methods and tools to support future creation, synthesis and articulation of the knowledge and experiences of disabled people, contributing to policies that positively impact their social determinants of health.

‘Doing’ normativity in disability studies: soft suggestions towards an empirical ethics of disability

As a field concerned with improving the lives of disabled people, disability studies has always been a normative field of inquiry. For this reason, Vehmas and Watson (2016) urge disability scholars to engage with normativity more explicitly. This article builds on Vehmas and Watson to consider how disability scholars can ‘do’ normativity so as to arrive at normative insights attuned to the lives of disabled people themselves. The article has two aims. The first is to examine how normativity has been ‘done’ in disability studies research up to the present. Here, the article locates three problems that hinder the pursuit of normative insights that have sufficient bearing on disability experiences. The second is to make some suggestions for more reflexively ‘doing’ normativity in disability studies in a way that does yield insights of this kind. For this latter goal, the article draws on ideas from the field of empirical ethics.

History and Divisions in Nicaragua’s Disability Rights Movement

The UN Convention on the Rights of Persons with Disabilities represents an important innovation in international law. For the first time, states are legally obligated to seek the advice of civil society organizations representing rights-holders in the development of legislation and policies and the monitoring of their implementation. In Nicaragua, however, the civic history of the Sandinista Revolution and civil war has left the local disability movement divided. Disabled war veterans want laws guaranteeing special treatment; self-help groups would rather focus on providing their own services than advocating for new laws. This demonstrates that the success of the CRPD’s civil society provisions is as dependent on the local identities and experiences of disabled people as it is on states’ adherence to international law.

Characterizing the energy use of disabled people in the European Union towards inclusion in the energy transition

Designing environmental policy to take account of social difference is increasingly recognized as essential to address both effectiveness and justice concerns. So far there is limited research on the experiences of disabled people in the environmental literature, amounting to a failure to recognize this substantial constituency. Here we compare disabled households’ embodied energy use, income, risk of poverty and energy poverty, and other socio-demographics with other households in the European Union. We find that households including an economically inactive disabled person earn less and consume 10% less energy than other households, and are more likely to experience energy poverty. Disabled households have lower consumption than other households in most categories, with the exception of basic consumption such as food, energy at home (gas and electricity), water and waste services: in effect they have less—and sometimes inadequate—access to resources. We conclude that more attention should be paid to disabled households needs to ensure a just energy transition.

Disabled and confined: using art therapy as a coping strategy during the COVID-19 pandemic

The contemporary universal challenge of COVID-19 pandemic put more restrictions to disabled people’s social interaction. This paper reports qualitative findings from a short-term art therapy intervention for a person with West Syndrome to examine how art therapy can be used as a coping strategy with the psychological impact of confinement. The data were analysed using Cathy Malchiodi’s theory of ‘art in therapy’ and Edith Kramer’s theory of ‘art as therapy’. Findings from this study show that the use of art therapy as a coping strategy during the confinement period has clear benefits as it promotes emotional well-being and helps to reduce the mobility limitations caused by disability. The article concludes that art therapy can be used as an alternative way to cope with disability. It aims to positively impact parents and caregivers through highlighting new spots of action. Points of interest The article looks in detail at the real-life experiences of a disabled person during the period of home-confinement. Disabled people experience isolation from society and the home-confinement policies put more restrictions to their social interaction. Disabled people need to be involved in activities such as painting, drawing, colouring, singing and story-telling to better cope with confinement. This type of research is important because it can help caregivers improve the quality of personal assistance during the period of confinement.

“I’m also prepared to not find me. It's great when I do, but it doesn't hurt if I don't”: crip time and anticipatory erasure for disabled archival users

Using data collected through semi-structured interviews with disabled archival users, this article foregrounds disabled people's relationships with time, specifically to pasts and representations thereof in archival material. It illustrates the ways in which disabled people use their knowledge of how disability is understood—in archives and in society—to anticipate their erasure in archival material. First, focusing on the past, this data illustrates the prevalence of disability stereotypes, tropes, and limited perspectives within the records that document disabled people. Second, in witnessing such representations (or lack thereof), disabled researchers described how they are affectively impacted in the present moment: witnessing the violence of the past is emotionally difficult for many disabled people researching their histories. Third, using past experiences of archival erasure, interviewees described coming to expect and anticipate future absences—anticipation as an affective mode helped them prepare to encounter forms of erasure, to protect themselves against possible harms, and to hope for something different, all of which reflects their experiences of how disability is understood in society. This data reflect the way anticipation is a central facet of crip time—the multiple ways that disabled people experience time, pace, and temporal moments—to show how disabled people feel through multiple temporal landscapes and approach historical and archival representation.

A Kitchen-Table Talk Against Ableism: Disability Justice for Collective Liberation

ABSTRACT Residing in a fundamentally ableist society while disability justice tends to be rendered invisible in many movements for equity and collective liberation, we aim to challenge the existing knowledge of disability and discuss how these understandings play out in education, policy, and other public spaces. In this kitchen-table talk, we begin by reflecting on our own positionalities in relation to disability to re/imagine alternative definitions of disability justice. We explore the ways language is used to reclaim disability pride and radically disrupt normative stories about disability and other marginalized identities. Being an ally requires centering the voices and lived experiences of disabled people at the intersections of differences, particularly those who are politically and socially alienated and erased.

Lives turned upside down in COVID-19 times: exploring disabled people's experiences in 5 low-and-middle income countries using narrative interviews

This article explores COVID-19 related experiences of disabled people in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents' priorities, which enabled us to hear what was most significant for them and their families. 143 interviews were conducted online or by phone by 7 local researchers (3 disabled), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach.An overarching 'subjective' theme of feelings experienced by the participants was labelled 'destabilisation, disorientation and uncertainty'. We also identified 'concrete' or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope. We found both the concept of liminality and grief models productive in understanding the progression of participants' experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.

Personal factors that affect disabled people's access to healthcare in the Bosomtwe District of Ghana.

The health status and quality of life of disabled people are of immense public health concern and the Sustainable Development Goals cannot be achieved if the healthcare needs of disabled people are not met. A qualitative case study was conducted in the Bosomtwe District of Ghana to ascertain personal factors that affect disabled people's access to healthcare in the context of disability stigma. A total of 30 disabled participants were selected through purposive sampling, and data were collected through an interview guide utilizing a face-to-face interview and focus group discussion. Themes were developed and presented as findings and relevant quotes have been provided to support the findings. The study found factors such as self-stigma, knowledge about disability condition, financial challenges, location and accessibility challenges, communication challenges and lack of personal assistants which affect their access to healthcare. The experiences of disabled people have influenced them to construct their meanings regarding their conditions and subsequent health-seeking behavior. It is recommended that the district health directorate in collaboration with the National Commission for Civic Education should intensify public health education in the district which should be custom-made to suit the community's needs and understanding of disability taking into account local culture and belief system.

'I hang out with non-Christians all the time. I just won't date them': The role of religion in the intimate lives of adults with intellectual disabilities.

A limited number of studies have explored religion's role in the intimate lives of adults with intellectual disabilities. This paper illustrates how religion, both of disabled people and those around them (e.g., family members, support workers), can shape the attitudes and experiences of disabled people toward sexuality. This paper draws on in-depth interviews with adults with intellectual disabilities and support workers from two exploratory projects in Canada. Participants with intellectual disabilities talked about how religion provided a network that served to counter their social isolation and a pool of potential intimate partners, as well as some guidance for maintaining relationships. Support workers discussed the influence of organisational values in their practices related to sexuality. Religion shapes disabled sexualities in various ways, sometimes supporting or constraining sexual expression. This paper invites disability scholars to consider religion when researching the intimate lives of disabled people.

Experiences of food access among disabled adults in Toronto, Canada

Physical access to food is frequently studied using universal measures, like distance to stores, excluding experiences of people who move or travel differently, like disabled people who choose to use mobility aids. Aiming to understand disabling experiences of food access, mobile interviews were conducted with 23 disabled adults who use mobility aids and/or experienced physical barriers to mobility. This study uses a critical ableist studies perspective, looking beyond the effect of the ‘disabled body’ and focuses on relational distances to food, including physical, economic, and social resources that could lead to pathways of disablement. Results highlight intersecting disabling barriers to food access, including socioeconomic barriers and physical barriers within the home, neighbourhoods, transportation, and food destinations and temporal inaccessibility due to construction and inclement weather. These findings suggest the importance of improving and enforcing accessibility standards in public and private places in coordination with addressing socioeconomic disadvantage of disabled people. Points of interest Disabled people experience greater risk of food insecurity. Food insecurity for disabled people could be reduced with increased incomes from disability income sources or through a basic income supplement. Physical barriers to mobility were located within the home, neighbourhoods, transport systems, and food destinations. Limited income often resulted in greater physical barriers to food access (e.g., inadequate housing or transportation) and reduced ability to overcome physical mobility barriers. Disruptions related to construction, weather, or mechanical breakdowns resulted in risks to safety and uncertain food access.

Roundtable on Disability and Advertising, Part II

Abstract: A panel of academics and industry leaders came together to discuss the topic of disability and advertising. In Part II of this roundtable, participants discuss many topics: considerations of disability in the creative design process; the need to consider disabled people's experiences with advertising; representing disability with authenticity; casting disabled people in advertising; the power of ads to inform about disabilities as well as accessible technologies; ways to engage the disabled community; and advice to practitioners, faculty, and students.

The experiences of disabled people in the United Arab Emirates: Barriers to participation in higher education and employment

I draw on the United Nations Convention on the Rights of Persons with Disabilities as a human rights model of disability to analyze how the United Arab Emirates (UAE) is meeting its obligations toward disabled people in higher education and employment. This paper argues that institutions in the Emirate of Abu Dhabi adopted a paternalistic and reactive approach to address the rights of disabled people. Drawing on the experiences of disabled people in the UAE and evidence from interviews conducted from 2016 to 2018, the analysis identifies several key challenges to inclusion that stem from a weak enforcement and accountability framework, which results in a lack of accessibility measures and supports in university and workplace settings. The paper recommends interventions that would create an institutional environment where disabled people are treated as rights holders and given equal and equitable access to higher education and employment. Points of interest This paper studies the barriers that disabled people face in higher education and employment in the United Arab Emirates (UAE). The UAE is a very rich oil-producing country located in the Arabian Gulf with a small number of citizens and a large migrant population. The key problems disabled people talked about are how they are denied equal access to learning supports in the university and how employers do not give them measures and tools to do their work. Because the UAE has signed the United Nations Convention on the Rights of Persons with Disabilities (CRPD), it should not allow that disabled people are treated unfairly or that they are treated in an unequal way. The UAE should make its laws stronger and monitor the implementation of the CRPD.

“This is NOT okay:” Building a creative collective against academic ableism

Disabled university students, as well as disabled faculty, staff, and other community members, face an array of challenges in conducting their studies and in navigating their daily lives. The authors relay their experiences as disabled members of a university community, and recount the work they did to gather information about the experiences of disabled people at the university, and to find a group intended to creatively and supportively address the shortcomings of the institution in meeting the needs of disabled people on campus. Throughout, the authors pay attention to the ways in which disability acts as a significant factor of marginalization for members of institutions, often in interaction with other marginalizing factors.

The Impact of Employment Status and Occupation Type on Occupational Stress and General Health of Physically Disabled Employees in Vocational Centers of the State Welfare Organization of Tehran: A Cross-Sectional Study

Objective: Disabled people experience worse situation in respect of the stress, health, and socio-demographic indicators than healthy people. Little knowledge is available about the way in which this disadvantage is patterned by employment status and occupation type, especially in employees with physical disabilities. Few studies have investigated the potential effect of employment status and occupation type on general health and occupational stress in physically disabled employees. This study investigated the role of employment status and occupation type and demographic factors in predicting general health and also, examined the relations between occupational stress and general health while adjusting for demographic factors among employees with physical disabilities in vocational centers of the State Welfare Organization in Tehran City, Iran. Materials & Methods: This was a descriptive-analytical study with a cross-sectional design. The study was performed among 273 people with physical disabilities employed in the productive workrooms of vocational rehabilitation centers of Tehran, which were selected via convenience sampling. Data collection tools were Occupational Stress Index (OSI) developed by Belkic (1991) based upon cognitive ergonomics concept to measure the five key potential work-related stressors, Goldberg’s 28-item General Health Questionnaires (GHQ-28) (1979) to detect psychiatric illness as well as current psychological state in the past month and self-administered demographic form. Data analysis was conducted in SPSS software, using the independent t-test, one-way ANOVA and multiple linear regression. Results: The Mean±SD age of the physically disabled employees was 33.65 (3.76) years. Most of them were aged 30 to 39 years. (55.2%), men (60.4%), married (60.4%), with part-time employment (67%) and engaged in productive affairs (30%). The relationship between general health and occupational stress with gender and marital status was found to be significant (P<0.05). Women and married subjects had more occupational stress. Moreover, there were significant differences in general health and occupational stress subscales regarding employment status (P<0.05). Part-time employees were exposed to more stressful physical conditions and accidents at work than others, causing a higher level of occupational stress. In addition, employees who were engaged in art-related jobs had higher rate of time pressure, problems and decision-making situations in their workplace, hence, overall more occupational stress. Multiple linear regression analyses were then performed on data to identify general health predictors while adjusting for demographic variables. Age had a significant independent direct effect on enhanced somatic symptoms (β=0.16). Disabled women had a higher score of somatic symptoms than men (β=1.97). Furthermore, part-time employment was directly related to somatic and depression symptoms (β=1.26 and 1.51). Productive works were significantly associated with a higher level of somatic symptoms, anxiety, insomnia and depression symptoms (β=1.28, 1.53 and 1.95, respectively). Therefore, being female, employing as a part-time worker and working in productive affairs were significant predictors of somatic and depressive symptoms in physically disabled employees. Moreover, the physical condition of the workplace, workplace problems and decision-making situations were positively related to somatic symptoms (β=0.7, 0.13 and 0.14, respectively). In overall, 49% of the variance in somatic symptoms (the best model fit) could be explained by independent variables. Conclusion: Employment status and occupation type are significantly related to occupational stress, which in turn, causes general health disparities among people with physical disabilities. With respect to the higher level of somatic symptoms and depression in part-time employees, it seems that changing their employment status to full-time, can reduce their stress load and improve their health. In addition, women and married subjects experience more occupational stress and have more somatic symptoms

Toilet Signs as Border Markers: Exploring Disabled People's Access to Space

Signs prescribing our permission to enter or abstain from specific places, such as those on toilet doors, mark murky borders between quasi-public and private space and have profound impacts upon our lives and identities. In this paper we draw on research which centred trans, queer and disabled people's experiences of toilet in/exclusion to explore how the signs on toilet doors shape disabled people's experiences of toilet access away from home and therefore their use of public space more broadly. We argue that the use of the International Symbol of Access (ISA) both delivers a false promise of accessibility and maintains the borders of disability through (re)enforcing a particular public imaginary of disability. We note the forced reliance on toilets in institutional and commercial settings when away from home and argue that, under capitalism, accessibility is persistently restricted by its potential to be lucrative.

Environmental barriers to and facilitators of labour market participation as experienced by disabled people living in Switzerland

Forming part of a larger project on how disabled people exercise active citizenship in nine European countries, this study examined factors that enhance or hamper disabled peoples’ opportunities to participate fully and on equal terms with others in the domain of work. Twenty-six, gender-balanced life course interviews with persons living in Switzerland and representing four impairment groups and three age cohorts were conducted. Applying qualitative content analysis, we found that over the entire work life course environmental factors such as support structures and attitudes were most salient (as compared to personal factors and impairment effects), and that facilitating and impeding factors cut across impairment groups and age cohorts. To achieve parity of participation and to enhance people with disabilities’ active citizenship and opportunities to access, and flourish in, the labour market, society has to both recognize their rights and provide sufficient economic resources to remove existing barriers. Points of interest Having a paid job is an important aspect and sign of a person's social participation and inclusion. We collected personal stories of disabled people living in Switzerland to identify the barriers and support they experienced in finding and maintaining a suitable paid job. Most of the barriers identified were environmental and could have been addressed by workplace adjustments and policy changes. The diversity of the disabled interviewees was reflected in the barriers and support they experienced. However, the presence or absence of support from family members, job counsellors, employers and work colleagues played an important role across different types of disabilities. Recognizing and understanding the barriers that disabled people experience with regard to paid employment will help to develop appropriate social responses and individual strategies for self-help.

“They say jump, we say how high?” conditionality, sanctioning and incentivising disabled people into the UK labour market

This paper focuses on the experiences of disabled people in the UK assigned to the Employment and Support Allowance Work Related Activity Group. Specifically, it considers the impact of processes of conditionality and sanctions on this group. The research was designed, conducted and analysed collaboratively between a disabled people’s user-led organisation (DPULO) and an academic team. The research documents the negative impact that processes of conditionality and sanctions had upon participants. The results highlighted 3 main themes: a lack of equality between disabled claimants and other claimants; significant impact of issues of compliance within a regime that imposes conditions and sanctions; and alternative ways of experiencing and responding to this policy regime. Suggestions are made as to how to involve disabled people in decision-making at policy level to ensure that such conditionality and sanctioning are not used when there is clear evidence that highlights the damaging and detrimental effects of these processes. Points of interest This research looks at how changes to welfare support in the UK have had a negative impact upon the health and wellbeing of disabled people. The research found that processes of sanctions on welfare payments were ineffective in getting disabled people to engage in work-related activity. Instead they create a range of punishing conditions that are often negative to health. The impact of sanctions was life threatening for some participants. The underlying fear instilled by the threat of sanctions meant many participants described living in a state of constant anxiety. This did not enable people to engage in work related activity. Participants described camaraderie in relationships of mutual support to be helpful in counteracting the negative impacts of sanctions. These findings are of particular relevance for the expansion of business models of welfare across a number of international policy settings. This research recommends more active engagement between welfare system researchers, government and Disabled People User Led Organisations (DPULOs) to develop alternative ways of engaging Disabled people in work related activity.

Making Room for Activist Voices in a Philosophically Sound Theory of Disability

Against the medical and social models of disability are two newer proposals. Elizabeth Barnes’ Minority Body proposes that it is the bodies which are advocated for and included in the disability rights movement which are rightfully called “disabled.” Savulescu and Kahane’s Welfarist approach proposes that disability is intrinsically tied to the effects of bodily states on welfare. They put the need for a consistent and relatively simple normative theory above accounting for standard case judgements about who is and is not disabled or looking at all to membership of the disabled community. I argue that Barnes’ theory offers the best response to issues with the dominant models of disability. Further, I argue that the Welfarist theory operates in a space removed from the wishes and lived experiences of disabled people – separating ‘disability’ from activism entirely – to its detriment. Doing so compromises its explanatory power, over-generalizes the concept and prevents the insertion of meaningful boundaries. Barnes’ ‘solidarity thesis’ soundly conceptualizes disability whilst making room for activist voices. The centering of activist projects makes it stronger.