The Global Movement of Organizations of Persons with Disabilities

Historically, disability was defined solely on the basis of an individual’s impairment(s) and viewed from a medical standpoint. Responses focused on prevention, treatment and management of impairments, and persons with disabilities were considered objects of charity or care.

However, a social approach emerged in the latter half of the twentieth century, whereby disability was seen as a result of environmental barriers that, in combination with a person’s impairment(s), hindered participation in society. Interventions shifted from the individual to the collective level, and societies and Governments came to be seen as responsible for identifying and removing physical, social, attitudinal and cultural barriers.

This shift in approach from the medical to the social provided fertile ground in which the global DPO movement could take root. Individual DPOs had hitherto been active in a handful of countries, but now a growing collective consciousness began to transcend borders:

The recognition by the State of issues for people with disabilities and their carers, and the provision of resources, played some part in the development of political consciousness by individuals with disabilities. […] We saw the development of a social movement […] informed by our common experience of systemic oppression. This moved beyond the disease labels of the biomedical model which was, and still is, the dominant defining aspect of difference and disability. We were discovering the social nature of disability, claiming a social definition which informs action […] This was a fundamental element in the rise of a social movement of oppressed people speaking for themselves.[1]

DPOs began to play a growing role in national and global forums, previously dominated by organizations for persons with disabilities (disability-specific NGOs), and thereby helped to deepen understanding of disability and cement the realization that persons with disabilities have the right and are best placed to inform policymakers of their needs and aspirations.

A defining moment for DPOs came with their involvement in the end-stage negotiations on the Convention on the Rights of Persons with Disabilities. Drafting of the Convention was “the first such process to so extensively facilitate the participation of civil society, and it was noted by numerous government delegations during the General Assembly’s adoption of [the Convention] that the participation of disabled persons was critical to ensuring delegates’ understanding of the issues at stake”.[2] The slogan “Nothing about us without us” that emerged at the time has become a watchword for the global disability movement.
The Convention was adopted in 2006 and is the main source of guidance on disability policy for its 160 States parties.[3]

Under the Convention, States have an obligation to involve DPOs in decision-making (article 4) and monitoring of the Convention’s implementation (article 33). The Convention also sets forth how DPOs can work with the Committee on the Rights of Persons with Disabilities, the body of experts mandated to monitor implementation of the Convention by the States parties. DPOs can: make written submissions on country-specific information; request briefings with the Committee; deliver oral statements during Committee sessions; work with the Committee during country visits; and intervene in procedures concerning communications, such as training and the representation of alleged victims.[4]

Table 1.  The Convention on the Rights of Persons with Disabilities on their representative organizations

Article 4: (3) In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.
Article 29:  States parties […] shall undertake to: […] (b) Promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs, including: […] (ii) Forming and joining organizations of persons with disabilities to represent persons with disabilities at international, national, regional and local levels.
Article 32:  (1) States parties recognize the importance of international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will undertake appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities.
Article 33:  (3) Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.

Note: Author’s notes are in italics.

[1] Newell, 1999, p. 47.

[2] Guernsey, Nicoli and Ninio, 2007, p. 4.

[3] For the latest information on the ratification of the Convention and its optional protocol, as well as declarations and reservations, see

[4] See Annex II of the Convention on the Rights of Persons with Disabilities in CRPD/C/11/2.