Accessibility Monitoring for People with Disabilities

The Accessibility for Ontarians with Disabilities Act (AODA) is a law mandating that organizations in Ontario must comply to accessibility standards for people with disabilities. However, there is no tool to report accessibility complaints and track them. To that effect, mobile applications can be effective to make report and monitor accessibility issues as they arise in private as well as public spaces (e.g. building, sidewalks). An App would provide users with an opportunity beyond the mapping of compliance, it can provide data that addresses the gaps across legislation and embodied experiences. The objective of this paper is to share a novel method associated with the development accessibility monitoring Android App prototype called “ACCESS-ABILITY.” ACCESS-ABILITY is a first-of-its-kind app in the domain of disability informatics, it facilitates the formation of a collaborative virtual community that can be used by people with disabilities, advocacy groups, organizations and official bodies.

Innovation in Civic Education

Educators, advocacy groups, and policymakers are mobilizing to strengthen civic education across the nation. These renewed commitments must be designed and implemented in ways that ensure today's graduates are ready to effectively engage in modern civic life. Since civic education is key to effective participation in our democracy, ensuring a quality civic education is also an equity issue. Students must have foundational knowledge about our nation's values and government, effectively evaluate the validity of claims in digital media, take and defend positions across multiple platforms, and leverage technology to inform and mobilize their community around ideas they care about. This chapter explores proven practices in civic education and technology-enhanced instructional approaches that schools can leverage to modernize their civic education programs.

Representation of Patients With Rare Diseases in Spanish Media

There are more than 360 associations of patients with rare diseases in Spain that strive for visibility to obtain funding and encourage clinical pathologies. The Spanish Year of Rare Diseases has been a considerable effort to be part of media agenda since 2013 and a “collective voice” throughout the media has been encouraged with the international initiatives devoted to the cause. Over the past years, representation of patients with rare diseases in Spanish media has been very superficial, despite the renewed interest during the Spanish Year of Rare Diseases. Certain cases as “Paco Sanz” or “Los Padres de la Pequeña Nadia” have negatively affected this representation by using the disease to pursue economic benefit. This chapter reports on the representation of rare diseases through Spanish media and the way it evolved in the last 6 years. The findings highlight the effort that has been made by patient advocacy groups with rare diseases and their relatives and caregivers, who have been recognized and proactive to get the treatment and medication needed.

7. Interest Groups, Advocacy, and Policy-Making

This chapter describes interest, pressure, or advocacy groups, which organize separately from political parties, seeking to influence public opinion and public policy. It discusses the nature of these groups and what they do, before reviewing the debate on the power of interest groups, in particular whether business has a privileged position. Studies of interest groups show the importance of these groups to the delivery of public policy, which reveals a two-way relationship between groups and the state. There is a complex pattern of governance that makes policy-making complicated and difficult terrain for governments or regional and local agencies. In today's turbulent politics, there is room for new advocacy groups to upset the equilibrium. The very unpredictability of the interest group world and the appearance of actors skilled in the use of social media may provide opportunities to influence the political agenda and to engage in more disruptive politics.

Practical Considerations in the Administration of Aducanumab for the Neurologist

Aducanumab (Aduhelm®), developed by the biotechnology firm Biogen in Cambridge, Massachusetts, was approved using the less common accelerated approval pathway by the Federal Drug Administration (FDA) reserved for treatments that fill a significant unmet need.1 Its approval on June 7, 2021 has been met with an outpouring of opinions from prescribers, insurers, advocacy groups and hospital systems regarding its risk benefit profile.2-4 Originally approved for all forms of Alzheimer’s disease (AD), the FDA updated aducanumab’s labeling on July 8th, 2021 for “treatment in patients with mild cognitive impairment or mild dementia stage of disease, the population in which treatment was initiated in clinical trials.5 With six million people nationally in the United States who suffer from AD and an anticipated one third of those who may now fulfill the criteria under the revised labeling, the implications of aducanumab’s approval continue to generate national interest.6

NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan

Patients with cancer have widely divergent experiences throughout their care from screening through survivorship. Differences in care delivery and outcomes may be due to varying patient preferences, patient needs according to stage of life, access to care, and implicit or explicit bias in care according to patient age. NCCN convened a series of stakeholder meetings with patients, caregivers, and patient advocacy groups to discuss the complex challenges and robust opportunities in this space. These meetings informed the NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan held on December 10, 2020, which featured a keynote presentation, multidisciplinary panels, and presentations from patient advocacy organizations. This article encapsulates and expounds upon the findings from the stakeholder meetings and discussions during the summit.

“Nationalizing Local Struggles”

Chapter 2 offers a new model for understanding the dynamic relationship between local community organizing and national movement building. It highlights the critical contributions of local organizing to building the participation and leadership of those most impacted by injustice and to create organizational forms capable of sustaining campaigns to win policy changes. At the same time, it reveals the limitations of local organizing to dismantle a system of racial inequity deeply embedded in national structures, policies, and consciousness. It considers the contributions of national movements like influencing federal policy and challenging racist stereotypes and narratives. However, they are typically too narrowly focused on federal policy and dominated by Washington-based professional advocacy groups. Instead, movements can be stronger when they seek to strengthen and spread local organizing, “nationalizing local struggles,” and when groups grounded in communities most impacted by injustice share power with professional advocates.

Navigating the Tensions: Women’s Rights, Religion and Freedom of Religion or Belief

Despite the normative integration between freedom of religion or belief (FORB) and women’s equality, these synergies are difficult to discern and there is a common misperception that women’s rights to equality and FORB are clashing rights. This is compounded by the extensive religiously phrased reservations by states upon ratification of international treaties that amplify this misperception that FORB serves to restrict women’s rights to equality. The advocacy groups supporting these rights, and also their normative sources in international human rights law instruments, are largely distinct. However, general non-discrimination provisions do address both, and General Comment no. 28 captures both rights holistically. The correctives to these misperceptions lie in reflecting upon the universality, indivisibility, interdependence, and interrelatedness of all human rights norms. They also lie in the realization that FORB is a right like any other. FORB is neither a right of “religion” as such nor an instrument for support of religiously phrased reservations and limitations on women’s rights to equality. This is particularly the case with harmful practices, as elaborated in the joint general recommendation/General Comment no. 31 of the Committee on the Elimination of All Forms of Discrimination against Women and no. 18 of the Committee on the Rights of the Child however, the core principles also extend to other infringements of women’s rights to equality. It is essential to (re)vitalize the synergies between FORB and women’s equality in order to advance each of these rights, to be able to address overlapping rights concerns, and to adequately acknowledge intersectional claims. Furthermore, the relevant advocacy groups and human rights mechanisms need to give further attention to this as a priority matter.

Is Restorative Justice an Effective Approach in Responding to Children and Young People Who Sexually Harm?

In the UK, Australia, and further afield, restorative programmes have been developed as a response to the failure of the criminal justice system to give victims of sexual violence a voice in the legal process. The restorative justice literature has tended to focus on sexual offences perpetrated by adults and the importance of being victim centred. When it is a child or young person (CYP) who sexually harms, it poses a unique set of challenges for law and society and the restorative practitioner. This article explores the reasons why a different approach may be warranted given the perceived failure of conventional criminal justice in addressing the growing problem of child and adolescent harmful sexual behaviour (HSB) in Scotland. It discusses the difficulties with balancing the rights of the victim with the CYP who perpetrates the HSB and considers the challenges encountered by practitioners in the implementation and application of restorative programmes in HSB cases involving CYP. Although the evidence supports a growing need for a different approach, and restorative justice may offer just that, problems with net widening, the referral process, and resistance from other professionals and victim advocacy groups present real barriers. Consequently, restorative practitioners are likely to find practising in this area more challenging due to a lack of support and cooperation.

‘Disturbing’ children’s YouTube genres and the algorithmic uncanny

Since late 2017, journalists, advocacy groups, and policy-makers have expressed serious concerns about popular genres of video content on YouTube that target child viewers but which are not child-appropriate according to extant definitions and cultural expectations. This article combines a discourse and thematic analysis of 54 news articles and opinion pieces about ‘disturbing’ children’s genres on YouTube with textual analysis of the two genres at the centre of this reportage. The analysis illuminates why the formal, aesthetic, and thematic qualities of these particular child-oriented YouTube genres trouble existing cultural expectations around children’s media. I argue that the genres addressed in the reportage share a key quality that I refer to as the ‘algorithmic uncanny’: common semantic and syntactic features that foster among reporters a perception that algorithms have played a key role in not only distributing the content but in shaping its aesthetic and thematic agendas.