Using Data to Advocate for Disability Rights

Using data to advocate for disability rights

In my experience in the inclusion field, I have found that the lack of reliable data and comparable statistics are major obstacles to including a disability perspective into development programs. Improving the collection, analysis, and availability of disability statistics is essential to advocating for disability rights. Data provides the foundation for enhancing policy and decision-making on evidence-based programs.

I have provided support in the humanitarian sector. Program managers ask basic questions that call for statistical information. These questions apply to disability issues. One of the simplest and most frequent questions is: How many people with disabilities are there in the population?

But statistical information must go beyond the total number of persons with disabilities.  For example, in order to design appropriate services, a program manager needs to know:

  • the types of disability within the population
  • the degree of disability – mild, moderate, or severe
  • how frequently each type of disability is to be targeted with services
  • what are the appropriate services, and
  • how the prevalence of disability varies by age group, gender, and geographic region.

Statistical information is needed to remove barriers and ensure equal participation and equal access to services.Data is essential for more comprehensive policy development, implementation, monitoring, and evaluation. The UN 2030 Agenda for Sustainable Development demonstrates the importance of the classification of indicators according to the state of disability. If you have only general numbers about people with disabilities, you cannot respond with actual advocacy efforts.

Think about how the data you are collecting supports your advocacy effort. If you can’t use the data to advance your advocacy, you need to collect different data.

Convention on the Rights of Persons with Disabilities

An important tool for advancing disability rights is the Convention on the Rights of Persons with Disabilities (CRPD). CRPD is an international human rights treaty of the United Nations. It is the first legally binding international instrument with comprehensive protection of the rights of people with disabilities. It became effective on 3 May, 2008 and has 164 signatories and 182 ratifications/accessions.

Article 31 outlines the critical importance of data collection in advancing disability rights: [emphasis mine]

  1. States Parties undertake to collect appropriate information, including statistical and research data, in order to be able to formulate and implement the policies of the CRPD.
  2. Information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties’ obligations under CRPD and to identify and address the barriers faced by persons with disabilities in exercising their rights.
  3. States Parties shall bear the responsibility to publish these statistics and to ensure their accessibility to persons with disabilities and others.

At the heart of the CRPD is a social model of disability which differentiates between an impairment and a disability. The CRPD aims to promote the equal participation of persons with disabilities in all aspects of life. It is intended to remove barriers for individuals with functional impairment. To achieve this goal, an understanding of the extent of disability prevalence in a country is required.

A number of important elements are required to make policy decisions:

  • appropriate data to understand how disability is distributed among the population,
  • mechanisms established to measure disability rates by gender, age, race, region of residence, or other characteristics, and
  • measures to understand the effectiveness of policies which aim to reduce participation gaps.

For example, to track the prevalence of disability in different geographical areas, a country needs to adopt a reference standard. This is a standard tool that is used by all programs and all services to identify the disability and its level of severity. We can then observe that prevalence rates in some areas are higher than others. This data provides information for programing. Programs can then target or prioritize these areas to create accessible infrastructure. A country's institutions or non-governmental organizations need this kind of information when identifying barriers faced by people with disabilities. For example: can persons with disabilities use the public transportation available in the community? If not, what are the reasons that limit them from using it?  (See this campaign for an example in Tunisia.)

It is necessary to answer these questions to know how people with disabilities can advocate for their rights. Data can help organizations become allies to help advocate for change, such as adapting environments to be more accessible and inclusive to persons with disabilities. These might include ramps, lifts, and braille instructions on public transport. It might include alternate seating arrangements on public transport. These are all examples of accessibility modifications. These kinds of modifications help everyone – the elderly, parents with young children, etc.

Washington Group on Disability Statistics

The 2001 International Seminar on Measurement of Disability in New York brought together country experts in disability measurement. Participants agreed that existing data was rare and often of poor quality. This is especially true in low- and middle-income countries. The Washington Group on Disability Statistics (WG) was established to implement recommendations from the Seminar. The Working Group was tasked to:

  • address the need for reliable and comparable population-based measures of disability,
  • foster international cooperation in the area of health and disability statistics,
  • produce internationally tested measures to monitor the situation of persons with disabilities,
  • and to incorporate disability into national statistical systems.

The WG has developed, tested, and validated several tools for the collection. These tools provide for internationally comparable disability data (such as the reference standards described earlier). The WG’s criteria assesses difficulties with six basic activities in functional areas. These include: seeing, hearing, mobility (walking or climbing stairs), cognition (remembering), communication, and self-care (bathing or dressing).

For example, a Washington Group question will ask about a person's ability to walk. The person may not be able to walk due to:

  • a physical impairment,
  • serious heart disease,
  • severe weakness,
  • inflammation of the middle ear that affects balance, or
  • another reason.

These are all impairments. Disability is the result of the interaction of the impairment and the surrounding environment. In a non-accommodating and inaccessible environment, not being able to walk may prevent this person from participating in society as others do. This might impact the person’s ability to:

  • attend school,
  • work,
  • support a family,
  • participate in civic activities such as voting, and other forms of governance, etc.

In the figure below, you can see the rate of disability among the Syrian refugees in Jordan shown by the 2016 UNHCR Pilot WG Questions. The differences in rates of disability changes depending on the survey questions (tools) used to collect the information.       

The set of six questions for census or surveys designed by the Washington Group does not diagnose conditions. But this tool has been used by more than 83 countries around the world to conduct population surveys and censuses.

There is a broader set of functioning questions called the Washington Group Extended Set.  This can be used to collect more detailed information. There is also a child functioning module developed in collaboration with UNICEF.

During my work in the inclusion field, I trained humanitarian workers on the use of WGQ. This was an important step to make their services and projects more inclusive and sensitive to people with disabilities. I coached them in adapting their data-collecting tool to include the suitable WGQ set. This selection depended on the age group and type of service. I found the impact of using the WGQ tool made these services and projects more inclusive. It helped in identifying adults and children with disabilities as a first step toward including them and to access services.

Visit the website of the Washington Group on Disability Statistics for more information.