In November 2018, the Committee on the Rights of Persons with Disabilities adopted the General Comment No. 7 on the participation of persons with disabilities, including children with disabilities, through their representative organisations, in the implementation and monitoring of the Convention. This most recent General Comment is significant, among others, because it clarifies which organisations can refer to themselves as “organisations of persons with disabilities”.

The General Comment (GC) 7 clarifies State Parties obligations under Article 4(3) – which requires that they closely consult and actively involve disabled people – and Article 33(3), on the participation of disabled people in the monitoring process. It explains what is to be considered as consultation, involvement and participation, and how to involve disabled people in monitoring of the CRPD implementation.

The GC notes that State Parties and the relevant stakeholders must “define the scope of organizations or persons with disabilities and recognize the different types that often exist”. It goes on to state that “organizations of persons with disabilities […] can only be those that are led, directed and governed by persons with disabilities. A clear majority of their membership should be recruited among persons with disabilities themselves.” (paras 10 and 11). This includes organisations of women with disabilities, children with disabilities and persons living with HIV/AIDS.

The GC lists different characteristics organisations of disabled people should have, such as that they promote and/or defend the rights of disabled people, employ and are represented by disabled people, may represent one or more constituencies and represent disabled people of different backgrounds. When it comes to different types of organisations of disabled people, the GC refers to the following: umbrella organisations, cross-disability organisations, self-advocacy organisations, organisations including family members and/or relatives of disabled people [emphasis added], organisations of women and girls with disabilities, and organisations and initiatives of children and young persons with disabilities. Importantly, when it comes to umbrella organisations, the GC states that their existence should not hinder individual organisations from participation in consultations or other forms of promoting the interest of disabled people.

In relation to organisations that include family members, the GC advises that such organisations are key to promoting the interest of their relatives with intellectual disabilities and/or children with disabilities, but only “when these groups of persons with disabilities want to be supported by their families as united networks or organisations”. Moreover the “role of parents, relatives and caregivers in such organizations should be to assist and empower persons with disabilities to have a voice and take full control of their own lives.”

Importantly, paras 13 and 14 make it clear that State parties should give priority to the views of organisations of disabled people, over those “for” disabled people, such as service providers and those that advocate for the rights of disabled people. Also, a distinction should be made between organisations of disabled people and civil society organisations (CSOs); with DPOs being a specific type of a CSO. Thus, the GC notes that CSOs and others should consult and involve organisations of disabled people in relation to work that concerns the rights of disabled people, and other related topics (including the environment).

The GC 7 is important for ensuring that disabled people’s voices are heard. Among other, it notes that “consultations should include organisations representing the wide diversity” of disabled people. When it comes to funding, the GC requires that State Parties ensure that the funding received [by DPOs from the Government] does not affect the autonomy of organisations of disabled people and their advocacy agenda.

ENIL will use the GC 7 to review our membership, making sure that all our full and associated organisational members are user led and/or work in compliance with the CRPD (to ensure that ENIL remains in compliance with the requirements of articles covered by the General Comment No 7). We will also rely on the GC 7 in cases where decisions that go against the CRPD are justified by consultation with disabled people. What the GC makes clear is that not all organisations are the same, that the voice of disabled people’s organisations should carry more weight, and that no organisation can refer to themselves as representative of all disabled people, nor should it be seen as such. Finally, the GC is very helpful when it comes to defining consultation and involvement, with the aim of ensuring that such processes are genuinely accessible to and inclusive of a wide diversity of disabled people’s views.

You can find the General Comment 7 here.