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Global child mortality has more than halved for the last three decades. Without a decrease in morbidity corresponding to that in mortality, this increased survival is likely to increase the number of children with disabilities, especially in low- and middle-income countries (LMICs). While population-based data on children with disabilities have been scarce in LMICs, it is estimated that among 52.9 million children with disabilities under 5 years worldwide, 95% live in LMICs. Sequelae of postnatal disease continue to be the major cause of child disability in LMICs; however, disability is increasingly the result of perinatal conditions. The Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities promote the rights of children with disabilities, but limited resources in LMICs have prevented the translation of policies reflecting these Conventions into practice. Because health care for children with disabilities is limited in LMICs, most of them are cared for at home. This places heavy physical and mental burden on family caregivers and affects the allocation of time and financial resources in the family. Simple interventions can dramatically improve the clinical condition of disabled children and should be applied in care at home. Legally recognized members of society, children with disabilities remain excluded from public support. Disabled children must be empowered to overcome this inequity. This is the focus of the "Nothing About Us Without Us" campaign. Society, including professionals, can further redistribute power by "putting the first last" to empower individuals with disability.

Students, especially young children, recognize differences. This guided inquiry positions elementary students to consider the (dis)abilities they see and do not see. This article couples trade book...

This article reports on a study conducted on South African Deaf learners’ attitudes towards inclusive education. Respondents were a non-probability (convenience) sample of seven learners aged between 17 and 25 years. A questionnaire containing ten open-ended questions was designed and administered to assess learners’ attitudes towards inclusive education. The questionnaire took participants between 30 and 60 minutes to complete in a group-based context. The help of a sign language interpreter was undertaken. The data collected were analysed using thematic analysis. The results reveal that six of the respondents were in favour of being granted the opportunity to express their innermost feelings rather than be told by teachers what their attitudes should be.

This empirical qualitative study aims (1) to understand the Chinese context in promoting accessible high-quality education for deaf communities and (2) to create an opportunity for deaf experts to ...

In this article we discuss the relationship between science / research and associativism associations in Zika Virus Congenital Syndrome (SCZV). At first we focused on the emergence of the main associations of SCZV in Brazil and the National Front for the Rights of the Person with the Congenital Zika Virus Syndrome (FNDPSCZV). Then, we discussed two demands from the Front: (1) discussions on research ethics with human beings and (2) lifetime pension for children with SCZV and how this topic relates to scientific research. We conclude that associations have sought a more horizontal relationship with science, sometimes denouncing their lack of empathy and ethics, sometimes making use of it. To this end, the associations have sought together with the scientific community spaces for dialogue in which they can be heard and respected regarding the uses and results of scientific research in their children through the motto “nothing about us without us”.

This article reports the findings from an exploratory and qualitative case study to understand how 34 leaders from 17 community-based non-profit organizations located in a municipality within the U...

Partnership with patients and carers in the production and implementation of evidence-based medicine (EBM) has long been highlighted as important and necessary.1 As outlined by David Sackett, the practice of EBM calls for the integration of external evidence and clinical expertise with the ‘patient's clinical state, predicament and preferences’ to determine if and whether it should be applied.2 This has led to the development of guidelines and principles around involving patients in the conduct, delivery, implementation and dissemination of evidence in healthcare.3 4 The past decade has witnessed a rapid increase in patient partnership in healthcare delivery.5 The 2017 EBM Manifesto identified patient partnership in the production of evidence as one of the key ways to develop more trustworthy evidence.6 Patients and carers are increasingly highlighted as having a key role in ensuring that new healthcare research is relevant, accessible and applicable to end users.7 Despite this increased awareness, there are still several challenges to support both researchers and patients to partner in the development of EBM. The EBMLive conferences (https://ebmlive.org/) have provided one platform to discuss some of these issues by bringing patients, researchers and clinicians together to tackle some of the uncertainty around how, when and where to involve patients in EBM. In this article, we describe some of the perceived challenges within patient and researcher partnerships in the production and implementation of evidence and highlight areas where future EBMLive conferences will explore. We also outline strategies on how researchers can better partner with, and support, patients to be involved in EBM. ### Why partner with patients? Patient partnership is morally necessary as patients are the individuals who are the most directly affected by the evidence generated. The ‘Nothing about us without us’ phrase is used by many patient groups calling for involvement in healthcare decisions. This …

This article examines collective action and the alliances between social movement organizations engaged in the work of solidarity with disabled people within and across borders during austerity. Bu...

The production of knowledge within the social sciences has contributed both to the oppression and liberation of fat people. In this piece, four fat activists review the role that social science cou...

Higher education institutions should ensure they create conducive spaces for students with disabilities to engage fully in both academic and social spheres. Yet, too often the educational opportuni...

Social justice requires that the “nothing about us without us” disability inclusion mantra not be rejected or watered down in knowledge production activities. Appreciating the need for a greater representation of disability in these activities, this investigative study aims to (a) determine if there is a statistically significant difference in the median research attribute reporting scores between articles whose content refers to the term “researchers with lived experience” and articles whose content refers to “non-disabled researchers,” and (b) to critically discuss how the scholarly literature reports on the attributes of researchers with and without disability. Enabling this exploration, this study has applied the Mann-Whitney U test and thematic analysis to a purposive sample of 20 articles that were retrieved from a Scopus database search. Findings reveal that the median score of reported research attributes was statistically significantly higher in the group of articles whose content referred to the term researchers with lived experience than in the articles that referred to non-disabled researchers. Results also highlight attributes of empathy, ability, rigor and activism that are reportedly shared across the two groups of articles. Crucially, attention is given to a theme reported as unique to the researchers with disability group. This is the attribute of having firsthand knowledge of disability (i.e., lived experience). The study concludes by recognising that lived experience, when incorporated throughout the research process, can help to redress deficiencies that might otherwise be present.

Empowerment in research is important in many autism and autistic communities and an important part of ‘nothing about us without us’. It is also an important component of person-oriented research et...

People with dementia are publicly sharing their experiences of living with the condition and acting collectively to produce social change. Social media could support them in doing this, but no previous studies have comprehensively analysed their use of Twitter. The aims of this study were to identify how people with dementia use Twitter and examine the illness identities they create and promote online. Tweetcatcher was used to collect 2774 tweets posted over six months by 12 account holders with dementia, across three countries. Tweets were analysed thematically. Six themes were identified through the analysis: nothing about us without us, collective action, experts by experience, living with dementia not suffering from it, community, and stories of dementia. On Twitter, people with dementia are developing a collective illness identity to further a social movement that is focused on improving the lives of people with dementia. They are also communicating their personal identities by documenting their lived experiences. Twitter is being used to convey positive, rather than negative, messages about dementia. The findings of this study also show that thematic analysis can be applied to micro texts that can combine over time to form longer narratives.

Novel machine learning methods open the door to advances in rheumatology through application to complex, high-dimensional data, otherwise difficult to analyse. Results from such efforts could provide better classification of disease, decision support for therapy selection, and automated interpretation of clinical images. Nevertheless, such data-driven approaches could potentially model noise, or miss true clinical phenomena. One proposed solution to ensure clinically meaningful machine learning models is to involve primary stakeholders in their development and interpretation. Including patient and health care professionals’ input and priorities, in combination with statistical fit measures, allows for any resulting models to be well fit, meaningful, and fit for practice in the wider rheumatological community. Here we describe outputs from workshops that involved healthcare professionals, and young people from the Your Rheum Young Person’s Advisory Group, in the development of complex machine learning models. These were developed to better describe trajectory of early juvenile idiopathic arthritis disease, as part of the CLUSTER consortium. We further provide key instructions for reproducibility of this process.Involving people living with, and managing, a disease investigated using machine learning techniques, is feasible, impactful and empowering for all those involved.

Background Processes of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of ‘nothing about us without us’ in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting. Methods As part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change. Discussion Our reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI. Conclusion These learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future., Patient and Public Contributions The key reflections presented draw heavily from perspectives shared by eight patient and public partners in interviews and facilitated discussions (the conduct and analysis of data in the quality improvement self‐study).

This paper focuses on the experiences of built coalitions between the authors, students and the Indigenous peoples involved in a study of digital design. Ontario Tech University has been working with the Indigenous communities of the First Nations in Ontario, Canada. The report begins with a brief overview of the issues faced by the Indigenous communities in Canada. For example, retaining their traditional language, knowledge, and culture on their traditional lands. The paper then outlines the study's design and methods to understand how technology may help the Indigenous community address these issues. To do this, the authors set up a course project for 21 graduate students in Computer Science at Ontario Tech University in Winter 2021. The students were formed into nine groups. Each group was assigned the design and development an interactive design product prototype that would address some of the Indigenous community's social issues considering user experience and co-design from the outset. Lastly, the report shares the findings of the study and discusses the success of ‘Nothing about us, without us’ and how the prototypes may ameliorate the issues faced by the Indigenous peoples. The takeaway that we aim for is an understanding that no matter how honourable it may seem to create something on their behalf, it is essential to involve the primary culture/language speakers. We also intend to create a model for this mutual collaboration which then can be pursued to enable mutually respectful relationships. Following the old adage, “give a man an app, and he will use it for one day, teach a man to design an app and he will share it with the world.”

People with an intellectual disability experience a protective regime when it comes to their sexuality. Families, carers, services and others mediate their experiences and act as gatekeepers throug...

Drawing from my analysis of sex worker and homeless protests as well as my experience doing ethnographic research with people experiencing homelessness and people in the sex trade, I put forth recommendations for ethical, policy-relevant research with groups of people who experience routine, normalized violence, and who are frequently silenced and misrepresented by academics and policy makers. This article analyzes protests against what activists identify as oppressive knowledge production by “outsiders” who are not sex workers or homeless. Protest events against research “about us without us” occurred between 2012 and 2015, and targeted academic researchers and policymakers. I draw lessons from marginalized groups’ protests against knowledge production by outsider “experts” to present three problems with traditional poverty research: pathologization, paternalism, and extractive exotification. I use my observations of protests and service provision to develop guidelines for solidarity research, a knowledge production practice that prioritizes the needs and perspectives of marginalized communities.

The involvement of consumers in the planning and development of health services has been encouraged and, in some cases, mandated. This involvement is viewed by many as a democratic or ethical requirement in that consumers have a right to influence services. Connecticut has been working toward the full implementation of a children's behavioral health system of care since 1997 but has lacked the mechanisms needed for family members to have their voices heard or to be full partners at decision-making tables. This paper is a case study that highlights work that has been done to 1) gather systematic feedback from families through the use of participatory research methods; 2) increase family access to data; and, 3) build the capacity of caregivers with the goal of increasing their involvement and leadership at all levels of the system of care.

In this exploratory case study based on qualitative research, we explore the perspectives and experiences of autistic self-advocates in the Netherlands regarding autism, (self-)advocacy, and consumer-run organizations. The focus of our study is a consumer-run organization by and for adult Persons on the Autism Spectrum in the Netherlands: PAS-Nederland or PAS for short. Our analysis reveals four themes relevant to the acceptance and integration of adults with autism into society and work: (1) invisibility of autistic adults; (2) diversity of the autism spectrum; (3) autistic leadership; and (4) collaboration between people with and without autism. We discuss the practical implications of our findings for the inclusion of people with autism in work and society. Our study underscores the importance of putting autistic people at the center of decision-making processes and solutions aimed at improving their outcomes in society, in general, and in the workplace specifically.

‘Nothing about us without us’ is a slogan that underlines the importance of engaging end-users in the development of programmes and policies. Although the concept has been widely used in politics, activism and social life, government-organised health services rarely seek patient and public input when developing new health programmes. Experts, physicians, public health leaders and others make the key decisions about what health services to offer and how they are delivered. End-user perspectives have been largely overlooked in the process of sexual health service planning. How can patients and the public be more involved in setting health priorities? This is the central question raised by a study organised by a multidisciplinary team in Liverpool.1 In addition to organising focus group discussions and other methods, they organised a crowdsourcing open call to determine STI research priorities in northwest England. Crowdsourcing open calls are a structured process to obtain ideas from people and then share these back with the broader community.2 Open call approaches have many advantages for soliciting input from stakeholders.3 The open call process used by this study to ascertain preferences related to STI research priorities demonstrates strengths related to diverse stakeholder networks, established priority setting methods and heterogeneous recruitment …

As community health workers (CHWs) have increasingly become recognized as members of health care teams, several states have considered or implemented processes to certify them. Between April and September 2017, we interviewed 41 stakeholders (e.g., CHWs, employers, and state health officials) in seven states that had considered or developed CHW certification to gather information about their processes and lessons learned. Interviewees reported several areas to consider in developing certification such as requiring training and education, deciding whether to certify based on experience, ensuring that CHWs are members of communities served, and avoiding marginalization of some groups of CHWs. Participants highlighted strategies for ensuring active CHW leadership in decision-making about certification. Interviewees identified best practices for supporting CHW workforce development such as using national models and standardized training, supporting CHW leadership, involving CHW professional groups, convening workgroups, and educating stakeholders. Findings are relevant to states seeking to grow their CHW workforce.

Scientists and students with disabilities have been severely affected by the COVID‐19 pandemic, and this must be urgently addressed to avoid further entrenching existing inequalities. The need for rapid decision‐making, often by senior colleagues without lived experience of disabilities, can lead to policies which discriminate against scientists with disabilities. This article reflects on disability declaration statistics and research in critical disability studies and social science to explore the challenges experienced by disabled scientists before and during the COVID‐19 pandemic and highlights recommendations and examples of good practice to adopt in order to challenge ableism in STEM communities and workplaces. It is vital that disabled staff and students are fully involved in decision making. This is particularly important as we continue to respond to the challenges and opportunities associated with the ongoing COVID‐19 pandemic and plan for a post‐COVID‐19 future. This time of great change can be used as an opportunity to listen, learn, and improve working conditions and access for scientists with disabilities, and by doing so, for everyone., Mind the gap! Disabled scientists and students have been severely affected by the COVID‐19 pandemic; this must be urgently addressed to avoid entrenching existing inequalities. The graphical abstract includes a bar chart comparing the % disability declaration statistics for the UK population (∼20% 2015–16), STEM first degree students (15.5%, 2018–19), STEM academics (3.8%, 2018–19), and UKRI grant applicants (∼1%, 2014–19); and highlights the key recommendations given in the article: meaningful consultation, flexible working policies, disabled staff networks, and allyship.

In the face of socio-political marginalization, frontline communities reclaim power by harnessing peer wisdom and resilience. The year 2020 marked the confluence of a global pandemic and widespread resistance against anti-Black racism and police violence, highlighting the value of peer voices and community perspectives. To dismantle and transcend carceral approaches to community care, the field of social work is invited to join a larger anti-carceral mental health movement that honors lived experience and works alongside peers to build identity-affirming structures of mental health care. This article examines the ways in which frontline communities benefit from expanded access to anti-carceral formal and informal peer support as a mental health safety net that interrupts harm and prioritizes agency, consent, and self-determination. This paper broadens social work’s conceptualization of peer support through theoretical frameworks of anti-carceral social work, abolition, and intersectionality. Social work and its adjacent fields are called to urgently center Black liberation, collective healing, and community care by advocating for the integration of formal and informal peer support into mental health policy and practice. This paper strategically leans into a lineage of critical peer thought scholarship by utilizing footnotes and citations to model the ethical acknowledgment of peer labor within human rights movements. This intentional structure promotes radical solidarity that resists the exploitation of people with lived experience.

In 2005, the Ghanaian government established cash grants for persons with disabilities (PWDs). However, PWDs are still living under deplorable conditions, which have raised questions about the involvement of fellow PWDs in the disbursement of cash grants. Using a human rights-based approach, nine participants with disabilities (hearing, visual and physical) who were leaders of the Disabled People’s Organisation in four districts were interviewed to explore their perspectives, which was thematically analysed. The results showed that leaders were not consulted or involved in the allocation of grants to PWDs. This paper discusses the need for bureaucrats to respect and involve PWDs in matters concerning their livelihoods.

This chapter looks at the campaign, development and ongoing implementation and improvement of the National Disability Insurance Scheme (NDIS) from the perspective of people with disability and advocates, based on the personal experiences of the author. It details the campaign and development phase through the lens of ‘Nothing about us without us’ and gives an insight into the role advocacy and the peer movement have played in building the scheme. The power dynamics of the different groups invested in the success of the NDIS are explored through discussion of the competing forces of government obligation and disability rights. In exploring the ongoing role of people with disability in scheme improvement, the importance of peer support is highlighted as well as the changing influence of disability leaders. The question is posed ‘Who tells you if you have gotten things right?’

The frameworks for regional and remote arts funding and delivery have shifted along a continuum of community ownership to fly-in-fly-out arts events, and with each change, the approaches to community consultation and project evaluation have also changed. What has not changed significantly is the underlying belief that regional and remote communities need arts and culture brought to them, and that urban arts events can be transplanted into these communities. This chapter explores methods and processes which aim to place the people most affected by community programmes at the heart of the design and development of the programmes and at the centre of funding strategies. The concerns and capacity of the community need to be the primary source for guidance in delivering impactful and sustainable arts and cultural events in under-served communities.

“Nothing about us without us” has become a common refrain over the past decade as patients and communities have pushed for a greater say in health care research and decision-making. But now some fear pandemic expediencies are eroding hard-won advances in patient partnership. COVID-19 had a “

Implication/Value: This chapter offers a closer look at the different meanings and implications of success, failure, and enabling or halting political renewal with regard to disability. On an empirical level, it adds more to the existing knowledge about the opportunities for, the role, the outcomes, and the specific features of alliance building in a context as Bulgaria, which presents us with specific combination of socialist legacies, post-socialist ways of abandoning disabled people, and, at best, short-term and transient embodiments of the “Nothing about us without us” tenet.

This chapter examines disability at international, national and personal levels. Disability is socially constructed and imbued with meaning in different ways by different cultures. Many people with disabilities and their families experience problems with access to health care, disability and community services; and a range of other challenges, including employment and transport barriers. Social workers hold potential to make a strong contribution to this space: providing there is focus on working with people with disabilities, in other words 'nothing about us without us as opposed to 'doing things to' people with disabilities. Social workers need to take care with language and descriptions and recognise that disability can be reduced down to a 'problem'. Social workers must respect the uniqueness and agency of individuals living with disability. Disability is defined as 'any restriction or lack of ability to perform an activity in the manner considered to be normal for a human being'.

This case study is on political participation and representation of the Ugandan disability movement. Uganda has had a disability quota system in the political representation based on affirmative action policy of the government since the 1990s. That is, from the village level to the Parliament level, there are always persons with disabilities represented in their decision-making structures. These representatives with disabilities are elected by persons with disabilities themselves at different levels, which realizes the international disability movement slogan of “nothing about us without us” in reality. Interestingly, gender balance is also stipulated in the political representation of persons with disabilities. The Ugandan disability movement is highly vibrant and has strong link to the Ugandan politics through aforementioned disability representatives called disability councillors. This very link, however, causes internal fragmentation within the disability movement due to disability politics.

Accessibility concerns play an increasing role in Human-Computer Interaction (HCI) research. This workshop takes a look at the role Critical Disability Studies currently plays in the development of assistive technologies and the accessibility of technologies more generally. Accordingly, it has been ten years since Mankoff's seminal paper on "Disability Studies as a Source of Critical Inquiry for the Field of Assistive Technology'' drew out the requirement of actively involving disabled people in research about them. We find it a fitting time for reflecting on and revitalising the topic. We will examine untapped research opportunities and identify systemic obstacles that keep disabled scholars in the margins of associated research. The gathering additionally serves to establish a community of researchers interested in pursuing the perspective of Critical Disability Studies within HCI.