Effective participation and inclusion of persons with disabilities is only one of the general principles of the Convention. However, it is particularly significant given the traditional invisibility of many persons with disabilities in decision-making that affects them.
Therefore, it can be valuable to elaborate on this principle, time permitting.
The concepts of full and effective participation and inclusion promote a reality where all people are able to take part fully in the public and private dimensions of their society and in decisions that affect their lives.
Participation. To be effective, participation must go beyond just consultation before moving along a predetermined path or with a predetermined decision. Effective participation should be as active as possible so that persons with disabilities are involved in decision-making processes and activities. It also involves an element of accountability. Decision makers should take account of the proposals and ideas put forward by persons with disabilities, either by modifying their action, activity or decision or, if that is not possible, explaining why they cannot do so.
Inclusion is not simply about physically placing persons with disabilities in the same space as persons without disabilities (for example, in the classroom). It is about mainstream society changing and adapting so that persons with disabilities can participate on an equal basis with others. For example, in the classroom, it could involve changing the syllabus to accommodate persons who are deaf or changing activities so that they strengthen the abilities and capacities of each pupil, with or without a disability.
Through participation and inclusion:
Participation and inclusion are not one-off experiences; they are lifetime experiences.
Furthermore, persons with disabilities should also have the opportunity to make decisions not necessarily related to disability or related to persons without disabilities. Sometimes, accessibility arrangements are made in relation to activities relating specifically to persons with disabilities (for example, a meeting on disability rights). However, persons with disabilities have many interests just as anyone else in society. For example, a person with a disability might wish to participate in meetings unrelated to disability and accessibility should extend to these activities as well. In this sense, the principle of participation and inclusion should be applied broadly.
Since the beginning, the participation of a vibrant civil society, including persons with disabilities, and representatives of organizations of persons with disabilities (DPOs), general NGOs and NHRIs, inspired the drafting process of the Convention.
In keeping with practice in human rights-related discussions, NGOs, including DPOs, were accredited to the Ad Hoc Committee that drafted the Convention and participated in the related sessions and meetings. The General Assembly constantly supported the active involvement of disability organizations in the Ad Hoc Committee's work.
A broad coalition of DPOs and allied NGOs formed the International Disability Caucus (IDC), the unified voice of organizations of people with disabilities from all regions of the world. One of its members stated that its goal was “to open doors for positive change that will end discrimination and ensure our freedom and rights”.
The level of participation of DPOs and NGOs in the drafting process was probably unprecedented in United Nations human rights treaty negotiations. By the Ad Hoc Committee's final session, some 800 DPO members were registered. Beyond the negotiations, DPOs have been actively involved in the “life” of the Convention. They were closely involved in the signing ceremony on 30 March 2007 and have been involved in the work of the Committee on the Rights of Persons with Disabilities, the Conference of States Parties and the Human Rights Council's annual debates on the Convention.
What role then did DPOs play? The International Disability Caucus was a key presence throughout and brought the concerns of international, regional and national civil society to the negotiating table. DPOs had a crucial role in the drafting of the working group text, the basis for negotiations on the final Convention, which was the result of the work of 27 Governments, 12 NGOs/DPOs and 1 NHRI.
The final text of the Convention was the product of truly inclusive negotiations. Many positions taken and suggestions provided by civil society, especially DPOs and mainly through IDC, were integrated in the text. Substantive proposals made by IDC, e.g., on the need to ensure that persons with disabilities are consulted in policymaking and decision-making, are integral parts of the Convention.
The role of IDC and NHRIs in the negotiations was also key to ensuring the inclusion of a provision on national implementation and monitoring requiring States to establish some form of independent national mechanism to protect, promote and monitor the Convention.
The motto “Nothing About Us Without Us” relies on the principle of participation and is used by DPOs as part of the global movement to achieve full participation and equalization of opportunities for, by and with persons with disabilities. The main message is that persons with disabilities must always be directly involved when strategies and policies are being planned that will directly affect their lives.
As an NHRI representative stated before the adoption of the Convention, “especially the active involvement of civil society has helped to give this Convention a sustained focus and relevance as well as bring its drafting to a speedy conclusion (...) This openness and inclusiveness has ensured that the fairly lengthy text of the Convention nevertheless possesses a powerful electric current.”
The key role of civil society did not stop with the adoption of the Convention; it continues with its implementation. Persons with disabilities are key in ensuring promotional activities and information about the Convention. The new approach of the Convention is very much about understanding and sharing the perspectives of persons with disabilities. These persons are also crucial in the process of reviewing and proposing national measures.