Convention of Rights 32: Statistics and data collection

The United Nations Convention on the Rights of Persons With Disabilities (CRPD) forms the foundation of disability rights laws in Uganda and is the model for the Persons With Disabilities Act (PWDA) 2006. The CRPD underlines and recognizes that persons with disabilities (PWDs) are entitled to all the human rights enunciated in the The Universal Declaration of Human Rights. If you are a PWD the rights in the CRPD are your rights, if you do not have a disability it is your duty to uphold and promote these rights.

Article 31 of the CRPD says:

1, The State is responsible for collecting data to monitor and formulate policies based on the CRPD. Collecting and maintaining information shall:

a, comply with the law, ensure confidentiality and protect the privacy of PWDs.

b, comply with international norms to respect human rights and freedoms, and respect the ethics of collecting data.

2, the data shall be split up as far as possible into its components and be used to help assess the implementation of obligations under the CRPD to better identify barriers faced by PWDs in accessing their rights.

3, the State is responsible for telling people these statistics and ensuring they are accessible by PWDs and others.

This Article is about obtaining simple straightforward data that is not confusing so that it is possible to use and compare statistical data. There are no international standards for data collection. It is for the discretion of governments to decide what data is collected. However, data collected should be used to assess whether the CRPD is being implemented correctly. It should be noted that data collection and presentation is not a right. The 2017 book The United Nations Convention on the Rights of Persons with Disabilities: A commentary makes the following observation:

Article 31 may not be the most discussed provision in the available literature on the CRPD, but it has the potential of being one of the provisions that can have the most impact. One explanation for the ‘low profile’ of this provision is that it has a more instrumental rather than substantive character. Hence, at the negotiation sessions leading to adoption of the CRPD, the Israel Human Rights Centre for People with Disabilities, commenting on the proposal of a provision on data and statistics in the CRPD, observed that collection of data was ‘a tool in the promotion of rights, not a right in itself.’ For this, some have argued that Article 31 did not belong in a human rights treaty.

Nevertheless, the idea of an obligation to collect data was not foreign to the Ad Hoc Committee responsible for negotiating the draft treaty. Data collection has been recommended in Rule 13 of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, which specifies that ‘States assume the ultimate responsibility for the collection and dissemination of information on the living conditions of persons with disabilities and promote comprehensive research on all aspects, including obstacles that affect the lives of persons with disabilities.’ In General Assembly Resolution 58/132 of December 22, 2003, para. 8, the importance of improving data and statistics covering persons with disabilities was also stressed. Likewise, the call for collecting data has been reiterated in connection with other UN conventions. To have a provision on data collection in the text of a human rights treaty is nevertheless a breakthrough.

The 2014 National Union of Disabled Persons of Uganda (NUDIPU) report Alternative Report to the UN Committee of Experts on the Implementation of the CRPD gives the following criticism of statistics collected by the Ugandan Government:

174. Current data is predominantly based on estimates and that captured by the Uganda Bureau of Statistics (UBOS) is too general and may be insufficient to guide planning processes. It is not disaggregated to gender, nature, age and extent of disability.

175. Refugees with disabilities are often hidden in refugee and displaced people’s camps, and are subsequently not identified in data collection or included in needs assessments. Consequently, mainstream assistance programs exclude them.

This blog has found that it is difficult to get accurate information on the number of PWDs in Uganda.

This graphic is from THE STATE OF THE WORLD’S CHILDREN 2013.

To collect statistical data on the number of PWDs in a population 6 core questions have been identified by the Washington Group (WG). These questions are enough to accurately record the number of PWDs in Uganda. In 2006, 20% of the population was assessed as having a disability using these 6 questions (see How is disability measured in Uganda?

The National Population and Housing Census 2014 – Main Report using only 4 of the core questions puts the number of PWDs at 12.5% of the population (see Estimate of the Numbers of Persons With Disabilities (PWDs) in Uganda).

The Uganda Demographic and Health Survey 2011 is said to be representative of the Ugandan population. In all 10,086 households were surveyed with 9,247 women age 15-49 and 2,573 men age 15-54. It estimates the number of PWDs in Uganda to be 19.2% of the population aged 5 years and over using the 6 questions identified by the WG (see Estimate of the Numbers of Persons With Disabilities (PWDs) in Uganda).

In summary, the 2006 census of all people in Uganda found the number of PWDs to be 20%. Since then only estimates or incomplete data have been used to record the number of PWDs. Sometimes the most recent data isn't the most accurate, statistics need to be examined carefully.

This is written in Article 31 of the CRPD in the following way:

Article 31

Statistics and data collection

1. States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall:

(a) Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities;

(b) Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics.

2. The information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties’ obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights.

3. States Parties shall assume responsibility for the dissemination of these statistics and ensure their accessibility to persons with disabilities and others.