Heba’s vision for the mandate
“connecting to push forward”
Based on the analysis of the work and achievements of the mandate holders over the past decade, the Special Rapporteur considers that the mandate is well positioned to “push forward” the implementation of the rights of persons with disabilities in a rapidly changing world. To that end, she intends to strengthen connections with persons with disabilities, their representative organizations and other stakeholders; promote the rights of persons with disabilities in key frameworks at different levels; consolidate and continue the work of her predecessors; and focus on thematic issues that are significantly influencing the ability of persons with disabilities to enjoy their rights. The Special Rapporteur wishes to have close interaction with persons with disabilities from all regions of the world and to make the mandate as reachable and accessible as possible, in order to maximize the participation and inclusion of persons with disabilities in her work. What follows is a description of her vision and her priorities going forward, although they are necessarily open-ended in order to accommodate emerging changes and issues as they arise.
Guiding principles
To continue with the established methods of work of the previous mandate holders, the Special Rapporteur is committed to be guided in her work by the overarching principles derived from the Human Rights Council resolutions on the mandate, and in alignment with the spirit of the Convention on the Rights of Persons with Disabilities, namely:
(a) Participation. Reflecting the participatory nature of the disability movement, the mandate holders have consistently striven to ensure the broad and inclusive participation of persons with disabilities, their representative organizations and other stakeholders, in all their activities. That is evidenced by the systematic issuance of calls for inputs for thematic studies, the holding of expert consultations and outreach and dialogue with civil society and organizations of persons with disabilities, particularly during country visits. Having a strong connection to the disability rights community is key to the credibility and legitimacy of the work of the Special Rapporteur;
(b) Inclusiveness and diversity. In line with the mandate, the Special Rapporteur will integrate a cross-disability, age and gender perspective into her work and address the multiple, intersecting and aggravated forms of discrimination faced by persons with disabilities. It is a fundamental concern for the Special Rapporteur to include and consider persons with all kinds of impairment, especially in contexts where some might be at higher risk of exclusion and discrimination, such as persons with intellectual and psychosocial disabilities. Equally, the Special Rapporteur recognizes that the intersection of disability with other characteristics can create multiple layers of barriers to the enjoyment of human rights and will be attentive to those specific situations and concerns. The Special Rapporteur is committed to embracing the concept that persons with disabilities are part of human diversity;
(c) Gender sensitivity. The Special Rapporteur aims to pay particular attention to the inclusion of gender issues in her work, taking into account, first and foremost, the multifaceted discrimination, marginalization and complex human rights violations that girls and women with disabilities face in most societies;
(d) Accessibility. The mandate holders have endeavoured to lead by example and promote accessibility in the discharge of their mandate by making consultations, events and documentation accessible to all persons with disabilities. For instance, all reports to the Human Rights Council and the General Assembly have been published in Easyread versions. Moreover, accessibility is a transversal issue and a precondition for the rights of persons with disabilities, and as such the Special Rapporteur will integrate accessibility into her substantive work;
(e) A collaborative approach. The mandate is located within the family of special procedures, which, as of November 2023, comprised 46 thematic and 14 country mandates. That offers a unique space for cross-fertilization, amplification and inclusion of the disability perspective in other human rights issues, and the Special Rapporteur will continue to work closely with other special procedure mandate holders. Equally important will be collaboration with other United Nations human rights mechanisms, including the treaty bodies, in particular, the Committee on the Rights of Persons with Disabilities, and other partners in the wider United Nations system.
“Connecting” with the diverse voices and perspectives of persons with disabilities
Bearing in mind the slogan of the disability rights movement “nothing about us without us”, which is built into the spirit of the Convention on the Rights of Persons with Disabilities, the voices of persons with disabilities, their issues, concerns and aspirations must be included in all policy” and decision-making affecting their lives. Making the perspectives of persons with disabilities visible and their voices heard is the most effective tool for change. It is therefore of the utmost importance to have robust communication channels and participatory mechanisms for persons with disabilities, their representative organizations and civil society at the national level, as well as in the relevant regional and international bodies and mechanisms. The Special Rapporteur, therefore, wishes to concentrate particularly on extending connections with persons with disabilities and their representative organizations as a tool for systematic disability inclusion based on human rights.
To that end, the Special Rapporteur aims to make communication with the mandate as accessible, easy and simple as possible, in order to connect with the diverse voices of persons with disabilities. It is the connection with persons with disabilities and their representative organizations that provides the legitimacy and credibility of the mandate. As such, the focus will be on “connecting” to advance the realization of all human rights of persons with disabilities, including ensuring access to services and support systems, bridging the digital divide they encounter in multiple ways and promoting equal opportunities and non-discrimination.
In particular, the Special Rapporteur will seek to:
(a) Expand connections with persons with disabilities, and their representative organizations, taking into account a cross-disability, age and gender perspective and other intersectional factors, and engage in outreach to raise awareness of her mandate. A key value will be gaining an understanding of the aspirations, barriers and concerns faced by persons with disabilities throughout the world in exercising their rights;
(b) Regularly connect with civil society actors promoting and monitoring human rights at the national, regional and international levels, so that the rights of persons with disabilities are visible and lead to a cross-fertilization of different approaches and issues. The ripple effect is often visible in capacity-building for organizations of persons with disabilities in terms of advocacy and participation in decision-making;
(c) Enhance dialogue with national bodies involved in the coordination and monitoring of implementation of the Convention, identify challenges and good practices, and support those bodies with capacity-building and awareness-raising initiatives on the rights of persons with disabilities and the related obligations under the Convention;
(d) Build connections with regional intergovernmental organizations to mobilize and amplify State efforts to assist the representative organizations of persons with disabilities to bring about a collective change in disability rights.
To build new connections and expand existing ones, a platform is needed for the Special Rapporteur to disseminate and exchange information more widely and effectively, assist with creating links between different stakeholders, raise awareness and connect with the diverse voices of persons with disabilities and all other relevant stakeholders. The resources and capacity required to develop such a platform will need to be assessed, while support will be sought from partners. The Special Rapporteur intends to progressively build and enhance the tools needed for communication and outreach, in order to ensure that the mandate is closely connected with the disability rights community in all regions.
“Push forward”
In accordance with her mandate, the Special Rapporteur is committed to promoting and protecting the rights of persons with disabilities at different levels. Pushing the agenda forward in a wide array of policy and normative frameworks is necessary in order to translate the paradigm shift of the Convention into reality on the ground.
At the international level, the 2030 Agenda for Sustainable Development with its commitment to leaving no one behind brought great promise for securing the rights and well-being of marginalized groups, including persons with disabilities. Halfway between the adoption of the 2030 Agenda in 2015 and 2030 itself, that promise is in peril, as only 12 per cent of the targets of the Sustainable Development Goals are on track and 50 per cent are only weakly or insufficiently implemented. Hunger and the number of people living in extreme poverty are on the increase.28
Disability-specific monitoring of progress with the Sustainable Development Goals is limited, but given that persons with disabilities represent at least 15 per cent of the global population and that they have been particularly affected by multiple global crises in recent years, the lack, and in some areas even reverse, of progress on sustainable development is particularly concerning. Without benefiting from and contributing to development, persons with disabilities will not be able to exercise their human rights. The added value of working towards sustainable development from a human rights perspective is apparent in the resolutions of the Human Rights Council on the mandate.
The Special Rapporteur will therefore advocate for the systematic inclusion of disability in efforts to accelerate the implementation of the 2030 Sustainable Development Agenda and for placing persons with disabilities high on the agenda in reflections on the post-2030 development agenda. In doing so, she will seek to join forces and closely collaborate with other special procedure mandate holders, human rights treaty bodies and other United Nations entities. In 2023, by endorsing the declaration of the high-level political forum on sustainable development, States committed to ensuring that persons with disabilities actively participate in and equally benefit from sustainable development efforts. That is welcome and should be translated into practical measures in the upcoming Summit of the Future and its outcome documents.
Furthermore, in line with the mandate, the Special Rapporteur emphasizes the importance of close collaboration with both the Conference of States Parties to the Convention on Persons with Disabilities and the Commission for Social Development by participating in their annual sessions, upon request, and exchanging information on policy developments, good practices and challenges in the realization of the rights of persons with disabilities.
While avoiding duplication of effort, the Special Rapporteur will continue to work closely with the United Nations system to achieve greater impact, in particular with other special procedure mandate holders and human rights mechanisms of the Human Rights Council, the treaty bodies, especially the Committee on the Rights of Persons with Disabilities, and the Special Envoy of the Secretary-General on Disability and Accessibility. She will seek to provide contributions from a disability rights-based perspective to the work of the human rights treaty bodies, for example in the framework of preparations of general comments and recommendations. She see important potential in the work of human rights treaty bodies for elaborating on the way in which different rights intersect with the barriers faced by persons with disabilities.
The Special Rapporteur believes that regional bodies and organizations play an important role in promoting the principles and objectives of the Convention through their policies and strategies and within the relevant regional cultural, social and economic contexts. They ensure easy and swift access to people with disabilities in a large number of countries. In the light of that, the Special Rapporteur will work to build bridges of communication and joint working with regional bodies to ensure that the rights of people with disabilities are promoted and protected.
At the national level, the Special Rapporteur considers the inclusion of persons with disabilities in political life as a major indicator of their social empowerment and active citizenship, as well as the effective exercise of their right to participate in political and public life. Their political participation, both as voters and candidates, leads to their issues and concerns becoming more visible in political programmes. Being politically represented at different levels of government is not only symbolically important, but also means that persons with disabilities have more direct participation in decision-making and equality before the law.
Revisiting the existing work of the mandate
The Special Rapporteur consulted with both her predecessors shortly after assuming her duties, in order to explore the critical issues that need to be pushed further and followed up, and that also intersect with her vision.
In her discussions with her predecessors, several critical issues were identified as warranting attention. First, 2024 marks five years since the adoption of the United Nations Disability Inclusion Strategy, providing an opportunity to take stock and identify challenges, as well as opportunities to accelerate implementation. Nearly five years after the introduction of the Strategy, there is a noticeable uptake in the number of United Nations entities that are reporting under this framework and that are meeting or exceeding its requirements. However, the desired pace of progress has not yet been reached, as 67 per cent of the requirements of the Strategy are currently not being met.29 In line with her mandate, the Special Rapporteur will continue efforts to contribute to the implementation of the Strategy and stress the importance of evaluating and reviewing this system-wide framework.
The Special Rapporteur also intends to continue focusing on the global challenges that face all of humanity and study their differentiated impacts on the rights of persons with disabilities and how to ensure the inclusion and participation of persons with disabilities in related policies and regulatory frameworks. The impacts of climate change on biodiversity and livelihoods, and the opportunities for building more climate-friendly and inclusive environments have significant repercussions for the lives of persons with disabilities. Equally important for the rights of persons with disabilities are advances in digital technologies, including artificial intelligence, which can be harnessed for socioeconomic inclusion, but can also exacerbate pre-existing inequalities and discrimination.
Thematic priorities
In order to push forward for the effective realization of the rights of persons with disabilities, the Special Rapporteur considers that several topics merit urgent attention, as they have a particularly critical impact on the lives of persons with disabilities. Those topics are also high on the global agenda and the inclusion of a disability perspective will not only strengthen the enjoyment of human rights by persons with disabilities, but also lead to generally more inclusive, legitimate and therefore effective policies and actions. As outlined above, the Special Rapporteur will be particularly attentive to including the voices of persons with disabilities in her research, while integrating cross-disability, age, gender and other perspectives, and to consulting all other stakeholders. The Special Rapporteur further notes that thematic priorities will be continuously assessed, reviewed and expanded during her tenure, in order to respond to emerging issues and developments, especially considering the global context that has been affected by multiple crises in recent years.
Climate change and persons with disabilities
According to the Intergovernmental Panel on Climate Change, the poorest people will continue to experience the worst effects of climate change through loss of income and livelihood opportunities, homelessness, hunger and harmful effects on their health.30 As a group that is disproportionately affected by poverty and faces multiple socioeconomic barriers in all regions, persons with disabilities are at especially high risk from the adverse impacts of climate change.
The Special Rapporteur considers it important to shine a spotlight on the specific and disproportionate impacts of climate change on persons with disabilities, in order to increase visibility and awareness. Wider awareness and understanding of the negative impacts of climate change on persons with disabilities, which can be further exacerbated by multiple and intersectional factors, will also accentuate the need for the engagement of persons with disabilities and their representative organizations in frameworks addressing the challenges that climate change brings. Without the inclusion and meaningful participation of persons with disabilities in the design, implementation and monitoring of climate change mitigation and adaptation measures, the adverse effects will only be further exacerbated for them.
Preparedness, risk reduction and the emergency response to natural disasters are closely connected with climate change. A key aspect, for example, is the availability and accessibility of effective warnings for persons with disabilities in areas likely to be affected by natural disasters as a result of climate change. Some positive policy developments are particularly relevant, such as the Sendai Framework for Disaster Risk Reduction, which calls for the integration of a disability perspective into all relevant policies and practices, while noting that safe rescue tools adapted to the different needs of persons with disabilities remain scarce. Implementation of the Framework, however, is not on track and disability inclusion has remained underresourced and underprioritized in all regions over the past decade.
Disability-inclusive digital transformation
Digital technologies are rapidly transforming the way in which Governments, economies and societies function, while more and more people around the world spend a significant part of their lives online. Such technologies have a profound effect on access to communication and information, education, employment, trade and the delivery of services, among others, all areas closely connected with the promotion and protection of the rights of persons with disabilities. The potential of digital technologies, such as mobile devices, e-governance and digital public services, and innovations, including artificial intelligence, have been highlighted as a catalyst for achieving 70 per cent of the Sustainable Development Goals.32
At the same time, the risk of entrenching inequalities and discrimination, owing to digital divides, are well recognized, particularly with respect to digital access and Internet connectivity, digital literacy, data collection and innovation. The negative effects could be particularly dramatic for persons with disabilities and severely undermine the realization of the overall paradigm shift brought about by the Convention, namely to ensure the autonomy, choice and agency of persons with disabilities. Given that many persons with disabilities do not have access to basic digital technology, which is a prerequisite for making use of more advanced technologies, including artificial intelligence, the risk of being excluded is a significant concern for persons with disabilities. Barriers to the enjoyment of their human rights could become unsurmountable.
To prevent such risks and harness the transformative potential of digital technologies, a policy and regulatory effort is needed for technology development and digital transformation processes to be disability-inclusive. Investments in infrastructure, skills, regulation and institutions are required, in order to achieve an inclusive, affordable and accessible digital environment, and ensure that persons with disabilities are consulted and included in the design of policies and regulations.
Building on the existing study on artificial intelligence and persons with disabilities produced by the previous mandate holder,33 the Special Rapporteur wishes to consider the wider context of digital technology to identify opportunities, risks and good practices, so that policy and regulatory development is inclusive of persons with disabilities who can fully benefit from the potential of inclusive, affordable and accessible digital technologies. That work touches on a number of critical issues, such as the digital divide in access to the Internet and digital devices; digital literacy; innovation and the availability of digital assistive technology; data protection and respect for privacy; and the inclusion and participation of persons with disabilities in developing policy and regulatory frameworks.
Families of persons with disabilities and inclusive care and support systems
The COVID-19 pandemic catalysed extensive discussions on the need to transform existing care and support systems to make them more sustainable, resilient, inclusive and rights-based, both for caregivers and for the recipients of care and support. The Special Rapporteur welcomes the increased attention and commitment given to the need to transform care and support systems, as illustrated in 2023 by the decision of the General Assembly to proclaim an International Day of Care and Support and a first resolution of the Human Rights Council on the centrality of care and support from a human rights perspective.34 She agrees that specific attention needs to be paid to the development of gender-responsive and disability-inclusive care and support frameworks that are embedded in local and cultural contexts, while ensuring that the individuals concerned have choices about and control over the support they receive.35
The pivotal role of families in providing care and support to persons with disabilities needs to be integrated into these discussions. In many contexts, it has been taken for granted that families will absorb all support needs,36 which negatively impacts the human rights of both persons with disabilities and those of their family members. The disproportionate impact on women is well documented, as the care and support responsibilities fall primarily on mothers, grandmothers, sisters and other female family members. In some contexts, mothers and their children with disabilities experience rejection and abandonment, owing to persistent stigma and, in the absence of support to provide care, find themselves in a vicious circle of poverty and exclusion.
The impact of the lack of or inadequate support for families on the rights of persons with disabilities, and particularly children with disabilities, is also severe, as the family environment and support are decisive for enabling independent living and community inclusion, and countering stigma and stereotyping. Lack of support, poverty and exclusion create conditions for unacceptable practices, such as limitation of autonomy and family separations, violence, abuse and neglect.
The Special Rapporteur therefore plans to pay particular attention to the voices of families of persons with disabilities and how to achieve adequate support for them, while acknowledging and addressing the disproportionate impact on women, and especially mothers of children with disabilities. In doing so, she will rely on the jurisprudence of the Committee on the Rights of Persons with Disabilities,37 as well as the work of other human rights treaty bodies that have emphasized the need for support and care systems that are gender-responsive, disability-inclusive and protect the right to family life.
Conclusion
Building on a robust body of work and achievements accomplished over the first 10 years of the mandate, the Special Rapporteur is committed to “push forward” for the full realization of the rights of persons with disabilities, pursuant to Human Rights Council resolution 53/14. To that end she will closely connect and consult with persons with disabilities and their representative organizations, States, United Nations entities, other human rights mechanisms, academia and other stakeholders. In order to ensure the effective implementation of her mandate and in a spirit of cooperation, the Special Rapporteur calls for support for her endeavours, with the aim of ensuring that her work makes a real difference to the lives of persons with disabilities and the realization of their human rights, without discrimination and on an equal basis with others.
