By Hanxu Liu
Every December 3rd, the International Day of Persons with Disabilities is observed by the UN to raise awareness about the dignity, rights, and well-being of persons with disabilities. Comprising 16% of the world’s population, people with disabilities are considered the largest minority group. Since the Day was proclaimed in 1992 (UNGA Resolution 47/3), the human rights of persons with disabilities have made significant progress, highlighted by the adoption of the landmark UN Convention on the Rights of Persons with Disabilities (UN CRPD) in 2006.
Persons with disabilities have always played a leading role in developing national and international disability policies. A notable example is their participation in the creation of the UN CRPD. Persons with disabilities and their representative organisations worked collectively and strategically with their allies under the slogan ‘nothing about us without us’. As civil society representatives, they greatly influenced the negotiations and drafting of the Convention.
The theme of the 2024 International Day of Persons with Disabilities is ‘Amplifying the Leadership of Persons with Disabilities for an Inclusive and Sustainable Future’. This theme emphasises the ‘importance of the participation of persons with disabilities in decision-making processes that affect their lives’, which is essential for fulfilling the promise of the 2030 Agenda for Sustainable Development (SDGs) – ‘leave no one behind’ – especially in response to the ongoing technological developments, global crises, and conflicts. Against this backdrop, this post explores ways to ensure the participation of persons with disabilities in public decision-making processes in accordance with international human rights law and governance.
The human rights model of disability
According to Article 1 of the UN CRPD, persons with disabilities include those with ‘long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’ This provision reflects a social-contextual understanding of disability, distinguishing it from the concept of impairment and moving away from the traditional pathological approach. In this understanding, disability is the result of interaction between impairments and various barriers present in the social environment.
Moreover, the UN CRPD is underpinned by the human rights model of disability and disability policy according to its treaty body – the Committee on the Rights of Persons with Disabilities. Under this model, persons with disabilities are recognised as a ‘part of human diversity and humanity’ (art. 3.b.). Their enjoyment of human rights is rooted in their ‘inherent dignity’ (art. 1) and should not be subject to their impairments or any other status.
The SDGs commit to achieving equality for all, explicitly promoting the human rights of persons with disabilities. The SDGs emphasise the obligations of states to comply with the international human rights normative framework while implementing the Goals. The UN CRPD serves as a guiding principle for adopting a human rights-based approach to achieve SDGs for persons with disabilities. Representative organisations of persons with disabilities actively engaged in the negotiation of SDGs and their relevant follow-up and review procedures. These organisations play a crucial role in holding the states and other national and international stakeholders accountable for meeting human rights standards during the implementation and monitoring of the SDGs.
Participation as a principle, an obligation, and a human right
Participation is outlined in the UN CRPD as a principle (art.3.c), a general obligation (art. 4.3.) and two substantive rights (arts. 29&30). Together, these provisions reaffirm the aforementioned purpose of the Convention, which is to ensure the full and effective participation of persons with disabilities in society on an equal basis with others.
As a general obligation, States Parties should ‘closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations’ in the implementation and monitoring of the UN CRPD, as well as in ‘other decision-making processes concerning issues relating to persons with disabilities’ (arts. 4.3 & 33.3).
The Convention recognises the right to participate and the right to self-representation for persons with disabilities in all relevant decision-making. This is particularly important to disability communities and movements because decisions have often been made on behalf of persons with disabilities regarding issues that affect their daily lives. This lack of participation and self-representation in decision-making often leads to neglect and abuse, which is well-documented in the history of mass institutionalisation of people with disabilities in many Western countries.
The Committee on the Rights of Persons with Disabilities defines the representative organisations of persons with disabilities or organisations of persons with disabilities (OPDs) as ‘organised, led and controlled by persons with disabilities’ at international, national, regional and local levels. These organisations are recognised for their role as human rights advocates and defenders, rather than being categorised by specific impairment groups. When implementing the obligation to consult, Stats Parties should prioritise the involvement of organisations of persons with disabilities over other civil society organisations in issues that directly affect their lives. OPDs are the main participants in consultations, as they represent the diverse backgrounds and collective voices of all disability communities.
The application of the obligation to consult is extensive. Alongside the decision-making processes of disability-focused policies, OPDs should be involved in consultations on all matters that may affect the lives of persons with disabilities. This encompasses issues such as armed conflict, humanitarian emergencies, and natural disasters (art. 11 UN CRPD) and international cooperation, including the implementation and monitoring of SDGs (art. 32.1 UN CRPD).
The participation of persons with disabilities and OPDs in national and international decision-making processes related to risks and emergencies is also highlighted in several UN documents, including the United Nations Disability Inclusion Strategy, the Sendai Framework for Disaster Risk Reduction 2015-2030, and UN Security Council Resolution 2475. The global COVID-19 pandemic has shown that persons with disabilities face increased risks, exclusion, and hardship during crises. Studies indicate that OPDs have played a vital role in supporting the communities and advocating for their rights throughout this period.
Roadmap and challenges for participation
In accordance with the abovementioned provisions in the UN CRPD and General Comment No. 7 (on Article 4.3 and 33.3) adopted by the UN CRPD Committee, States Parties are required to implement the following three groups of obligations to ensure the full and effective participation of OPDs in public decision-making processes. Other international and national stakeholders, such as the UN system and NGOs, could also follow them as principles in their work involving persons with disabilities and OPDs.
The first group contains procedural obligations concerning the legal instruments and institutional mechanisms that State Parties should establish to facilitate consultation activities (General Comment No. 7 para. 15). These include the national mechanisms for implementation and monitoring placed under Article 33 UN CRPD. The right to participate is closely linked to other civil and political rights, including the rights to freedom of expression, peaceful assembly, and association (e.g., arts. 21 & 29 UN CRPD; arts. 19, 21, &22 ICCPR). For instance, OPDs should be protected from intimidation, harassment or retaliation related to opinions expressed during public decision-making processes (General Comment No. 7 para. 29).
The second group addresses mainly positive obligations to ensure the participation and inclusion of all persons with disabilities when read in conjunction with other provisions in the UN CRPD. From the outset, accessibility (art. 9 UN CRPD) and reasonable recommendations (art. 2 UN CRPD) measures should be provided, allowing individuals to access the physical environment, information, and communication necessary for participating in consultations (General Comment No. 7, para. 45). According to the UN CRPD Committee’s General Comment No.6 (para. 24), these include an ex ante duty to provide group-focused measures, such as ramps in buildings and sign languages interpreters, as well as an ex nunc duty to provide measures to accommodate individual needs upon request, such as personal assistance. States should also actively promote an environment for the formation of OPDs through funding, support, and training (art. 29.b. UN CRPD; General Comment No. 7, paras 60-61).
Finally, participation in public decision-making processes requires access to data and information to ‘identify and address the barriers faced by persons with disabilities in exercising their rights’ (art. 31 UN CRPD). Data and information are particularly vital for OPDs to participate in monitoring activities.
The EU and all its Member States have ratified the UN CRPD. In practice, OPDs in Europe are often involved in the national implementation and monitoring mechanisms for the Convention and other formal consultations mandated by law and other measures. However, States Parties and stakeholders should pay particular attention to ensure the diverse involvement of OPDs in consultations, particularly for historically marginalised communities, such as the self-advocacy groups of persons with psychosocial and intellectual disabilities, and organisations of children and women with disabilities. In international cooperation, it is also important for stakeholders, including international funders, to closely and actively involve local OPDs in their projects. It is also important to note that the barriers experienced by persons with disabilities in daily life could make their participation in public and political activities more challenging and costly.
Conclusion
In observance of the 2024 International Day of Persons with Disabilities, we celebrate the achievements and contributions of persons with disabilities and their representative organisations in shaping disability human rights. This day serves as a reminder for states and other national and international stakeholders about the principles and requirements embedded in international human rights law to ensure the participation, representation, and inclusion of persons with disabilities in public decision-making processes. It also highlights the need of their leadership in governance and international cooperation on issues relating to their lives at all levels.
Bio:
Hanxu Liu is a lecturer and researcher at the Faculty of Health, Medicine, and Life Sciences at Maastricht University. She holds a PhD (Law) from Maastricht University, where her research focused on the European disability movement and its role in the international monitoring of the UN Convention on the Rights of Persons with Disabilities and the UN human rights mechanisms.