The lack of disaggregated data renders us invisible - CoSP 10 Opening statement


10th Session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities: "The Second Decade of the CRPD: Inclusion and full participation of persons with disabilities and their representative organizations in the implementation of the Convention”
13 June 2017 | UNHQ New York
Mr. President, delegates,
I’d like to thank the bureau for inviting me to participate in the opening of the 10th Conference of State Parties of the CRPD.
This year’s theme cannot be more relevant, as we initiate the second decade of the CRPD: How to ensure the full inclusion and participation of persons with disabilities and their representative organizations in its implementation?
As I stressed in my report on the subject, the full participation of persons with disabilities is one of the main pillars of the Convention. It is a fundamental human rights principle, and a basic condition to ensure active citizenship.  
Persons with disabilities and its organizations are the best positioned to determine their own needs, and the most adequate policies to address them. That is why their participation in decision-making allows for better decisions and more effective results, while also empowering and building capacity within the collective.
As we know, persons with disabilities and their representative organizations played an unprecedented role in the negotiations and the writing of the Convention. This was an advancement that must be replicated in the implementation and monitoring of the treaty.
Mr. President, delegates,
Discussing principles of inclusion and participation requires also to discuss the need to ensure a development that is inclusive of all persons with disabilities. The CRPD states clearly that human rights and development are inseparable.
In this sense, we should consider the CRPD and the 2030 Agenda as complimentary instruments. While the Convention offers normative guidance for the implementation of the 2030 Agenda, the SDGs can contribute to the realization of the rights of all persons with disabilities, including women and children, indigenous persons, refugees, among others.
A year ago, we reflected here about how the SDGs represent an exceptional opportunity to promote the design and implementation of disability-inclusive policies, allowing us to advance, at the same time, towards the full implementation of the Convention.
However, this opportunity may be lost, if we’re not capable of monitoring how persons with disabilities are participating and benefitting from the implementation of the SDGs.
I will be very explicit on this: we need a clear message from the UN system, specifically from its Statistics Division, recommending all Member States to disaggregate data by disability.
The SDGs established that States must collect disaggregated data to monitor advancements in their implementation and the extent to which advancements are reaching persons with disabilities. Article 31 of the Convention also requires states to collect statistical data to allow them to formulate and implement policies that advance the rights of persons with disabilities.
Mr. President and delegates,
There is a methodology that has been provenly effective to ensure data disaggregation by disability: the short set of questions developed by the Washington Group on disability statistics of the United Nations. They have also recently developed a specific module for disaggregating data by disability among children, in partnership with UNICEF.
These two instruments can be easily inserted in all national efforts on data collection at low cost, which would also allow for comparable data at the international level.
However, despite the reminders by Member States, UN agencies, civil society organizations, organizations of persons with disabilities and independent experts on the need for a clear recommendation for national statistic agencies to implement these data collection tools, we are seeing little action by the system’s responsible entities.
This causes great concern to the collective of persons with disabilities--concern which should be echoed by States and the international cooperation agencies.
Without disaggregated data by disability, we will not be able to know how effective States’ efforts are to ensure that SDGs benefit persons with disabilities. Adequate information would allow us to have a better picture of the challenges and achievements, and improve policies and programs to become more inclusive of persons with disabilities. It would also help us to direct national and cooperation resources more effectively toward those areas requiring more attention. 
Mr. President and delegates,
I urge you to join our call for an immediate definition of the methodologies needed to disaggregate data by disability, so the UN System can start providing the technical assistance required by States to implement those tools.
The lack of disaggregated data renders us invisible: a situation that we have promised to change a decade ago.
Thank you

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