Representing disabled people – what the UN disability rights committee has and has not said

On Friday 28 September I retweeted a link to the latest General Comment from the UN Committee on the Rights of Persons with Disabilities, on what constitutes ‘representation of persons with disabilities’ noting that:

“I’m sure lots of disability charities led by non disabled people will find their reasons to reject this, but a milestone statement by the UNCRPD Committee that only organisations led, directed & governed by disabled people can be regarded as representative.”

I imagined a few people might retweet and reply, but by Monday several hundred people had done so, all across the world, with heated debate about its implications. Here, for what it’s worth, are my more considered thoughts on what the Committee has said.

The Committee is giving guidance as to the meaning of ‘representative organisations’ as referenced in the obligations on State Parties in articles 4 (3) and 33 (3) of the Convention to ensure their involvement and participation in implementation and monitoring the obligations arising out of the Convention. Article 4(3) says:

“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.”

In its new General Comment, the Committee is unequivocal that:

“organizations of persons with disabilities should be rooted, committed to and fully respect the principles and rights recognized in the Convention. They 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.”

What the Committee’s General Comment therefore does, very clearly, is distinguish between organisations of disabled people – representative organisations – and organisations for disabled people. So for example, in the UK, Scope, Mencap, Action on Hearing Loss, Leonard Cheshire and Shaw Trust would not meet the Committee’s definition of a ‘representative organisation’, however much they strive to represent the views and priorities of their beneficiaries, whereas Disability Rights UK, Inclusion London and Equal Lives would do. For others, such as RNIB or Learning Disability England, it is perhaps less clear.

It creates a clear expectation that States closely consult, involve and support disabled people’s organisations and it makes clear that it will not consider the consultation and involvement of non-representative organisation as a State having fulfilled its obligations.   ‘Close’ consultation and ‘active’ involvement indicate far more than obligatory, passive consultations. A few years ago I gave this presentation at a British Council event, exploring what such involvement means in practice:

Of major interest to DPOs will be the Committee’s position that:

“States parties should support organizations of persons with disabilities, through sufficient and independent funding and technical capacity-building, to be able to fulfil their roles under articles 4 (3) and 33 (3) and for autonomous participation in consultations”

The Equality and Human Rights Commission should be recognised here for its efforts to involve and support DPOs in engaging with the CRPD Committee’s examination of the UK and ongoing monitoring.  But the Committee’s position clearly lays responsibility with central government.

At the same time, this position does not preclude States from engaging and involving other organisations and taking on board their views, knowledge, insight and perspectives. Certainly, Article 33.3 of the Convention says ‘Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process.’ (my emphasis) which clearly leaves the door open to non representative organisations being involved. This strikes me as a crucial point, both because there are many non-disability led organisations who, as allies, can make a vital contribution to advancing disability rights (such as generalist human rights organisations or anti-poverty campaign organisations for example) and because it may sometimes be beneficial to also engage organisations with extensive technical and market experience gained through providing services, or who have relationships with disabled people and their families through such service provision. However, the Committee’s position should be seen to call to an end any such non-representative organisation being regarded as ‘the voice’ of a group of disabled people and for them to be engaged with for what they are.

There are also a great many organisations providing valued services to disabled people who do not strive in any way to ‘represent’ disabled people. The General Comment can be regarded as a signal to them to more closely involve and consult disabled people, but it does not spell their illegitimacy as service providers or demand that only user led organisations win public funding to do so.

Quite reasonably, a number of parent advocates expressed concern at the content of my tweet.   The General Comment however helpfully clarifies (12 (d)):

“Organizations including both persons with disabilities and family members and/or relatives of persons with disabilities are pivotal in facilitating, promoting and securing the interests and supporting the autonomy and active participation of their relatives with intellectual disabilities, dementia and/or children with disabilities, when these groups of persons with disabilities are not represented by their own organizations. In such cases, these organizations should be included in consultation, decision-making and monitoring processes. 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. Such organizations should be actively working to promote and use supported decision-making processes to ensure that the right of persons with disabilities to be consulted and to express their own views are respected;”

That is to say, the Committee recognises and indeed celebrates the role of parent advocates, but qualifies this with the expectation that parents are genuinely pursuing the rights of their children, including through the application of supported, rather than substitute decision making (though as we know, that distinction is not clear cut in practice and the Committee itself has so far failed to give detailed guidance on its meaning).

The General Comment is an important and valuable milestone, restoring power to disabled people over their own lives alongside other key provisions in the Convention, such as on equal recognition before the law and political participation. At the same time, disabled people’s organisations are only as representative as the people who give their consent to be represented by them and despite some claims to the contrary no single organisation can lay claim to being the authentic voice of disabled people, in all their diversity of characteristics, views and opinion. With this recognition comes greater responsibility on DPOs to be open, inclusive and democratic, be open to collaboration with one another and prepared to negotiate and compromise.  Some DPOs also need to confront some of their own internal conflicts of interest, given many also combine advocacy with providing services under contract with or via grants from national and local government bodies.

Most of all, effective representation demands effective listening. As the ever-wise Jane (now Baroness) Campbell cautioned in 1997:

‘A political consciousness does not itself constitute a social movement and an awareness of the culture and dreams of its constituency and creating activities as a result are what the British Council of Disabled People constantly needs to engage in’