Intersectional Data and Persons with Disabilities

Edition September 2025

Intersectional Data and Persons with Disabilities

An Open Data Watch Report

Executive Summary

Intersectional data lie at the heart of inclusive development efforts. Despite their importance, the availability and use of intersectional data, especially for persons with disabilities, remain limited, posing significant challenges to evidence-based decision-making in many countries. This report explores the role of intersectional disability data in the data value chain to better understand the lived experiences of persons with disabilities and of organizations of persons with disabilities as key actors in generating and using intersectional disability data to influence policies and programs.

The report profiles three case studies from Ecuador, Mongolia, and the Philippines on how organizations of persons with disabilities address intersectional data approaches throughout the data value chain. The case studies highlight how marginalized communities, in this case, disability and deaf communities, can collect, use, and control their own data and empower their communities. The findings were collected from interviews tailored around the Open Data Watch and Data2X’s intersectionality and data framework[1] focusing on data collection, publication, data use, and impact and outcomes around disability communities. A summary of the findings follows.

Intersectional disability data collection is a valuable tool for identifying barriers and enablers for the most underrepresented groups of persons with disabilities that encounter multiple forms of discrimination. This process provides increased awareness around their situation and empowers community members. Intersectionality cannot be applied uniformly in all situations but must be adjusted according to each community’s context and its distinct characteristics. Findings from intersectional disability data can improve connections between disability communities and decision makers, influencing policies and ultimately making them more inclusive and participatory.

Ownership of data throughout the data value chain is important. Organizations of persons with disabilities must be fully engaged in data projects especially from the beginning. Ownership is essential to ensure data are accessible, relevant, impactful and reflect the reality of the community. Further, organizations of persons with disabilities need to have agency over how data are analyzed, used, and stored for ethical and safety protections. Community review and feedback on data processes can lead to empowerment and increased awareness for communities, providing valuable lessons for both the data collectors and community members alike.

Data capacity strengthening is valuable for both organizations of persons with disabilities and national statistical offices. But technical and financial support are needed to conduct long-term, sustainable data projects led by organizations of persons with disabilities, especially citizen data efforts with an intersectional lens that can turn data into policy.

Key recommendations:

• Ensure that organizations of persons with disabilities are fully engaged in data production throughout the entire data value chain, including in data design, collection, use, monitoring, and impact.
• Meaningfully consult organizations of persons with disabilities to identify key themes and intersections to address critical gaps.
• Provide capacity strengthening around intersectional disability data for both national statistical offices and organizations of persons with disabilities.
• Apply an intersectional lens to data collection and adjust according to communities and their distinct characteristics.
• Build and strengthen data partnerships between disability communities and key stakeholders.
• Engage in participatory and intersectional data approaches for communities to maintain ownership and control of their data to carry out safe, ethical, and accessible use of data.
• Collect, analyze, and share intersectional disability data to better understand the unique barriers and enablers of persons with disabilities and their intersecting identities for evidence-based policymaking.
• Financially and technically support long-term intersectional disability data projects led by organizations of persons with disabilities to identify and address intersecting and multi-discriminatory barriers.
• Highlight and support the principle that good data lead to good outcomes.

The outcomes from this report can be used in advocacy efforts to influence governments, the United Nations system, academia, and other key decision makers to strengthen the recognition and use of intersectional disability data to address one of the groups most often left behind in society.

Part I: Introduction

Intersectional data lie at the heart of inclusive development efforts. By examining how overlapping identities—such as gender, age, ethnicity, disability, indigeneity, income, geography, and others—shape experiences of marginalization or privilege, intersectional data provide a nuanced understanding of social inequities and identify those who face heightened risks of being excluded. This understanding is essential for designing inclusive development policies and interventions that leave no one behind, a core principle of the 2030 Agenda for Sustainable Development and its Sustainable Development Goals. Despite their importance, the availability and use of intersectional data, particularly for persons with disabilities, remain limited, posing significant challenges to evidence-based decision-making in many countries. This report explores the role of intersectional disability data in the data value chain to better understand the lived experiences of persons with disabilities and of organizations of persons with disabilities as key actors in generating and using intersectional disability data to influence policies and programs.

Intersectionality is a concept of how multiple identities, such as gender, disability, age, race, indigeneity, and others overlap to shape individual and group experiences. The term intersectionality was introduced in 1989 by Kimberlé Crenshaw[2] and continues to be applied in different sectors. By adopting an intersectional lens, we can ensure that efforts lead to truly transformative and inclusive processes. Think of a young deaf Indigenous woman living in a rural area. These intersections result in distinct discrimination or disadvantage due to power imbalances.

Data intersectionality involves collection, analysis, and dissemination of data that reflect diverse identities such as age, gender, location, disability, indigeneity, and other characteristics. It recognizes that people’s experiences are shaped by multiple intersecting identities and influence outcomes. Data intersectionality can highlight disparities that may be invisible or obscured when only considering a single identity or large group average and thus shed light on how different identities can shape data. Persons with disabilities are inherently intersectional and often with multiple intersecting identities, and therefore, it is imperative to understand these unique experiences to effect policy change.

Background

Globally, there are estimated to be 1.3 billion persons with disabilities, representing 16 percent of the world’s population, or 1 in 6 people.[3] The percentage of persons experiencing multidimensional poverty is higher for persons with disabilities than those without in almost all countries, and in some countries, that percentage is more than double.[4] Yet despite this, persons with disabilities are one of the groups most excluded from society, stripping persons with disabilities and their families of basic opportunities, pushing them into, or deepening, poverty.

Persons with disabilities are not uniform but rather comprise a heterogenous group and are incredibly diverse in their identities. Persons with disabilities who experience other and intersecting forms of discrimination are at further risk of being excluded from society, especially those from underrepresented groups. These include persons with deafblindess, albinism, leprosy, psychosocial, and intellectual disabilities, as well as children, women, older persons, LGBTQ persons, Indigenous peoples, and others with disabilities. For example, a woman with deafblindess experiences intersecting forms of discrimination based on gender and disability identities.[5]

To understand the situations of persons with disabilities better, more and better data are needed. Yet, there is a lack of disability data in both official and non-official data sources. Many countries do not produce or face challenges in producing official data disaggregated by disability in censuses and household surveys, especially health surveys in some regions.[6] In many cases, disability data that are collected nationally are not used, analyzed, or publicly available. At the same time, available data rarely reflect the lived experiences of persons with disabilities, lack information on access to services, and are not harmonized to support the development of comprehensive, evidence-based inclusive policies and programs. Moreover, prevalence rates of persons with disabilities can be inaccurate. This can be a result of some disability types being undercounted, such as persons with psychosocial disabilities. Additionally, low prevalence rates can stem from stigma around disability or lack of training for enumerators on asking disability or functioning questions. Citizen data processes typically collect data on persons with disabilities more, but organizations of persons with disabilities still are not consistently included in the co-creation and co-design phase of these projects. There needs to be more data collection on the barriers and enablers for all persons with disabilities, as well as intersectional disability data, including by disability type. More disability data are needed, and existing disability data need to be strengthened, which can be done by supporting inclusive data systems and recognizing and using citizen data as a complement to official data.

The disability data gap is especially evident in the monitoring of the Sustainable Development Goals, in which in the SDG global database a limited number of indicators have data disaggregated by disability.[7] Yet, the Convention on the Rights of Persons with Disabilities (CRPD) and the 2030 Agenda for Sustainable Development mandate countries to collect and disaggregate disability data, notably CRPD Articles 4 and 31, and paragraphs 48 and 57, and Goal 17.18 in the 2030 Agenda. Reflecting on a post-2030 world, commitments to disability data are included in the Global Digital Compact[8] paragraphs 13, d and 44, b and in Compromiso de Sevilla[9] in paragraph 63, a. Also, the emphasis on non-traditional data sources, including citizen-generated data, are included in paragraph 64, f.

One way to effectively address intersecting forms of discrimination against persons with disabilities is to prioritize and strengthen the collection, analysis, and use of data disaggregated across all relevant sectors, especially through an intersectional lens. The intersectional data approach should recognize the diversity within the disability community and include underrepresented categories of disability that are often excluded or less visible. It is also important to include persons with significant and multiple disabilities since they can face significantly greater barriers. Additionally, there should be a focus on contexts with limited data, especially where persons with disabilities are at most risk. These include emergency situations as evident during the Covid-19 pandemic,[10] also, situations of forced displacement; institutional settings;[11] incarceration; homelessness; and rural, remote, and climate-affected regions. This approach must include organizations of persons with disabilities in the data value chain, especially in the initial planning stages as this rarely happens with inclusion typically only later in the process. This enables organizations of persons with disabilities to maintain ownership of data to ensure data are accessible, protected, relevant, and reflect reality.

Both quantitative and qualitative encounter challenges with a comprehensive coverage of all marginalized groups. Qualitative, compared to quantitative data, provide more in-depth information on the experience of individuals. Thus, collection, analysis, use, and dissemination of qualitative data of persons with disabilities, including citizen data from organizations of persons with disabilities and non-governmental organization allies can complement quantitative data to measure gaps and progress. Qualitative data express qualities or characteristics, usually through descriptive narratives. Both quantitative and qualitative data are valuable in establishing evidence to support an argument or position, and they are often combined (mixed methods) to provide a complete picture. The main approaches for collecting and analyzing qualitative citizen data include ethnography, narrative inquiry, participatory action research, and case study. These approaches center on the perspectives of communities that are too often excluded from traditional data systems, particularly persons with disabilities and their representative organizations. Rather than treating people as mere data subjects, qualitative data methods, especially in citizen data, emphasize co-production, reflexivity, and intersectionality, recognizing community members as knowledge-holders and co-analysts. Importantly, organizations of persons with disabilities and other community partners can effectively use qualitative citizen data to advance rights, accountability, and for systemic transformation.

Citizen­ data are data that people, communities, or their organizations produce to directly monitor, demand, or drive change on issues that affect them. The Collaborative on Citizen Data, a multistakeholder initiative focused on strengthening and recognizing citizen data, defines citizen data as “data originating from initiatives where citizens either initiate or are sufficiently engaged, at the minimum, in the design and/or collection stages of the data value chain, irrespective of whether these data are integrated into official statistics.”[12] Citizen data can be quantitative or qualitative, structured or unstructured, and open or closed and are generated in several ways, including via surveys, texts, phone calls, emails, reports, storytelling, and social media. Citizen data are increasingly recognized as a complement to official statistics to measure progress of marginalized groups, including persons with disabilities. Organizations of persons with disabilities regularly carry out citizen data efforts to address critical data gaps and to provide agency, or ownership, and empowerment over the community’s data.

Intersectional data approaches can be applied to qualitative, quantitative, and/or citizen data methodologies. As highlighted above, using an intersectional data lens recognizes that people’s experiences are shaped by multiple and intersecting identities, including disability, which influences a person’s experiences. Persons with disabilities are inherently intersectional often with multiple intersecting identities and thus it is imperative to gather evidence on these experiences to influence policy change.

Part II: Intersectional data approaches: case studies

Framework

Open Data Watch and Data2X’s intersectionality and data framework applies inclusive data approaches along the data value chain. This ensures more inclusive policies, increases data agency – the ability and power of communities to collect, use, and control their data and be empowered by the data – and provides a more equitable, inclusive, and safe data system. To build more equitable and inclusive data systems, data intersectionality needs to be applied. This can be done by the following actions:

1. Gather relevant data that capture the lived experiences of persons with disabilities.
2. Disability communities agree on concepts and definitions of data projects.
3. Persons with disabilities and their representative organizations are supported to be active agents of data throughout the data value chain.
4. Increase the use and recognition of participatory and inclusive data methods in data collection.
5. Utilize innovative and accessible data collection tools to capture multiple disaggregations.
6. Support inclusive data governance systems.
7. Provide accessibility for all persons with disabilities throughout the data value chain.

Building on Open Data Watch and Data2X’s intersectionality and data framework, leaders from three organizations of persons with disabilities were interviewed. The interviews were carried out to learn more about intersectional disability data in the data value chain and the role of organizations of persons with disabilities as key actors in generating and using intersectional disability data. The interview questions were adapted for a disability community context and tailored around the intersectionality and data framework, specifically on (1) data collection, (2) publication, (3) data use, and (4) impact and outcomes. The interview questions can be found in the annex. The findings were analyzed and summarized to provide snapshots on how organizations of persons with disabilities can address intersectional data approaches and, consequently, shape data. Key areas of focus for each category are listed below and go in more depth in the following sections.

Data Collection

Collecting intersectional data is essential for the inclusion of marginalized groups to ensure that they are counted and to provide the evidence needed to design effective programs and policies addressing their unique needs and intersecting barriers. Key aspects of intersectional data collection include the following.

• Give agency to relevant groups missing in data.
• Consult with relevant groups to determine issues identified and valued by the communities and various groups.
• Involve all groups of interest, ensuring the inclusion of those that are marginalized, and facilitating free, open and equitable participation.
• Determine the appropriate dimensions and characteristics to be included in data collection operations.
• Facilitate self-definition and self-identification of the groups of interest.
• Establish mechanisms for citizens to engage in data collection and processing and co-create/design data operations with key groups.
• Establish partnerships and/or collaborations with relevant groups and organizations.

Publication

Intersectional data findings need to be disseminated in an accessible and open format in a safe, ethical, and transparent manner ensuring data ownership from the community. This is especially important for marginalized and oppressed communities for safety and protection. Key aspects of the publication of intersectional data findings include the following.

• Ensure the right of communities and population groups to control their data to ensure safe and ethical use in all stages of data presentation and dissemination.
• Ease data use and extracting insights.
• Protect data privacy and security.
• Clearly show data availability and indicate gaps in relation to key groups.

Data use

Intersectional data should be readily available, easy to access, understand, and be used to achieve objectives agreed with a community. Additionally, intersectional data findings can provide meaningful information, trends, and insights on barriers and enablers to gain better understanding of a situation and to inform policymaking. Key aspects of intersectional data use include the following.

• Improve connectivity.
• Ensure data access by all, with special attention to the accessibility needs of persons with disabilities and to those with limited access to technologies.
• Increase data literacy among all users.
• Engage with relevant groups to actively promote data use and show the value of data.
• Ensure the proper use of data to prevent harm, discrimination, or stigmatization of individuals or groups.

Impact and Outcomes

By engaging in a participatory process with marginalized communities and analyzing intersectional data, findings can identify causes of discrimination and barriers. Consequently, these findings can provide evidence to design more inclusive and effective policies, and ultimately achieve better, more equitable outcomes. Key aspects of intersectional data impact and outcomes include the following.

• Work with relevant groups to assess results and impacts, including policy changes.
• Consult with relevant groups to obtain feedback on data collection and processing and involvement at all stages of the data value chain.
• Review and improve data agency.

Case Studies

Ecuador: The Global Deaf Research Institute (GDRI) is a US-based organization of persons with disabilities that carries out national deaf needs assessments on deaf communities globally. GDRI collected data in Ecuador from September 2024 to January 2025 on deaf people’s quality of life and their basic needs. The project used mixed methods to collect data via interviews and surveys. Deaf community leaders and members worked with GDRI to help collect the data.

Mongolia: The Culture Centre for the Deaf, Mongolia is an organization of persons with disabilities that focuses on the rights, health, cultural empowerment, and arts of deaf and hard of hearing individuals, as well as women with disabilities in Mongolia. The Centre collected data in 2017 in Ulaanbaatar, Mongolia from 107 deaf women, including those temporarily in the capital from rural areas. The main goals of the project were to determine the types and prevalence of violence experienced by deaf women and raise awareness to prevent gender-based violence and reduce discrimination. The study applied mixed methods using pre-designed questionnaires specifically adapted for deaf women. Interviews were conducted in Mongolian Sign Language by trained deaf facilitators.

L

Philippines: Las Piñas Persons with Disability Federation, Inc. is a cross-disability barangay-based people’s organization in the Philippines with 16,000 members with disabilities. In 2021, the Federation carried out a data profile of persons with disabilities funded by CBM Global Disability Inclusion. The data were collected in all 20 barangays (villages) in Las Piñas from February to June 2022. Mixed methods were used, including interviews, in-person surveys, house-to-house interviews, satellite registration (homeowners), and online surveys.

Data Collection

Give agency to the relevant groups missing in data

Data initiatives led by organizations of persons with disabilities (OPDs) provide agency, or ownership, and empowerment over the community’s data. This process is important since persons with disabilities and their representative organizations are typically left out of official data processes, particularly in the early stages. Additionally, available data all too often undercount and/or misrepresent the actual situation of persons with disabilities. This is exacerbated for marginalized and intersectional groups of persons with disabilities.

All three case studies highlighted the process of empowering communities to ensure a participatory approach in the data process and to decide how and for what purpose to use the data. These examples show the power of communities being directly involved in data processes and how intersectional citizen data can directly influence policies that affect the lives of persons with disabilities. Community leaders and members were engaged throughout the data process to ensure agency, importance, timeliness, and validity of data.

The Global Deaf Research Institute (GDRI) empowered the deaf community in Ecuador with data literacy training while collecting data as an additional step. Around the world, deaf people tend to be delayed in developing language skills due to pervasive lack of education in national sign languages. Consequently, deaf people often face academic challenges from language deprivation.[13] Thus, GDRI provided data capacity building to the deaf community, which added a layer to the data collection.

The Culture Centre for the Deaf, Mongolia presented the research findings with participation from deaf women and representatives of women’s civil society organizations, however, there were mixed reactions to the results. Many participants expressed concerns. Some deaf women were afraid to have the findings published due to weak protection systems for survivors in Mongolia, especially for deaf women who communicate using Mongolian Sign Language. In cases of disclosure, no safety mechanisms were in place to protect the women from retaliation. Thus, after consultations with the funding organization and other stakeholders, it was decided only to use the final report for internal purposes.

Las Piñas Persons with Disability Federation, Inc. presented the data results and recommendations to a variety of stakeholders in December 2022. In attendance included other organizations of persons with disabilities (e.g., WOWLEAP Philippines), NGO partners (e.g., CBM Global Disability Inclusion), and local and city government representatives, including, Associations of Barangay Captains (ABC League), local labor and employment departments, employment service and city health offices, Las Piñas City Disaster Risk Reduction Management Office, City Social Welfare and Development Office, the Department of Education, and the Department of the Interior and Local Government.

Presenting the results played a significant role in making persons with disabilities visible to duty bearers and stakeholders. The results provided evidence on the current situation of persons with disabilities in Las Piñas, including which barangay (village) had the largest population of persons with disabilities, that one-third of the population of persons with disabilities in Las Piñas comprised persons with physical disabilities, and that more than 80% of persons with disabilities in Las Piñas were voters.

Duty bearers easily could identify priority programs for specific beneficiaries with the valuable intersectional data on persons with disabilities by village, type of disability, age, education, employment, cause of disability, and voting status. Additionally, the recommendations helped stakeholders plan and implement activities.

Consult with relevant groups to determine issues identified and valued by the communities and various groups (identify issues)

Consulting with all stakeholders is essential in determining the topics to be covered in data collection as they can identify data needs and gaps as they relate to their lives and experiences. All three case studies shared the process of consulting communities and other relevant groups to identify relevant and intersectional issues. Important topics and challenges for the communities emerged, including a need for training, lack of data literacy, mistrust, and data identification changes and gaps.

In the case of the Global Deaf Research Institute, identifying priorities, relevant gaps, and missing data for the community was a challenging process. Many deaf leaders were included in the consultations prior to data collection, and not everyone understood the concept or the power of data. Consequently, the framework was adapted. For example, the word “data” was not used, but instead “information,” and GDRI asked for stories and problems and how these could be addressed. GDRI collected detailed information through qualitative interviews. Interviews with deaf participants were adapted to build trust, which can take time for many deaf people. Since the lead researcher was deaf, trust was established quickly with community members and GDRI was given permission to collect and use the data.

The Global Deaf Research Institute used the World Health Organization’s quality of life assessment consisting of 26 questions (WHOQOL-BREF)[14] as a foundation, adding questions on accessibility challenges and demographics. Additionally, GDRI organized group discussions with the national deaf association president to assess the deaf community’s goals, challenges, and potential solutions. An example of a relevant theme that emerged from these discussions were challenges with sign language interpreters, the need for qualified interpreters, and the lack of trust with existing interpreters. Following the discussions, the emergent issues were merged using the social determinants of health model.

The Culture Centre for the Deaf, Mongolia worked with the deaf community to identify gaps primarily through particpant observation and from lack of data. The findings indicated that participants’ knowledge of human rights—particularly women’s rights—was significantly limited. Among the total 107 respondents:

• Three individuals (2.8%) stated they had sufficient knowledge,
• Twenty people (18.7%) said they had some understanding,
• Thirty respondents (28.0%) were aware of the topic,
• Twenty-five participants (23.4%) said they did not know about it, and
• Twenty-nine people (27.1%) did not respond—likely indicating they did not understand the question.

When combining those who did not know or did not respond (suggesting a lack of comprehension), a significant proportion of participants lack awareness or understanding of human and women’s rights. This highlights a major knowledge gap and suggests a need for targeted information and awareness-raising efforts in the deaf community. The data project aimed to close this gap by integrating gender, disability, and accessibility concerns.

In the case of Las Piñas Persons with Disability Federation, Inc., the disability community identified areas of interest and issues through the barangay (village) mapping. This was carried out via consultation with the barangay persons with disabilities association and lists of homeowner’s associations in the communities.

Home Visit in Barangay Daniel Fajardo with Persons with disability Assistance Desk Coordinator and Persons with Disabilities Officer and Area Coordinator. [Philippines]Prior to this data collection (in 2021), the last citywide disability survey was carried out eight years earlier in 2013 by the Federation as part of the bottom-up budgeting project from the national government. There were some changes between the 2013 and 2021 surveys that led to incomparability of data, including:

• Additional types of disabilities were added to the 2021 questionnaire (persons with cancer and rare diseases were included because of a new law). As such, the enumerators, officers, and area coordinators needed additional awareness training.
• The misclassification of the type of disability was a significant data gap. Persons with cancer in 2013 were classified under “psychosocial disability” or “physical disability” and in 2021 were classified under “cancer.”
• Persons with disabilities had moved or passed away, especially during the pandemic.
• Data on persons with disabilities in the community could be identified in new ways using data from barangay associations and homeowners, which were identified during the Covid pandemic (2019-2021).

Involve all groups of interest, ensuring the inclusion of those that are vulnerable and marginalized, and facilitating free, open and equitable participation

Accessibility is a precondition for inclusion into society for persons with disabilities.[15] This also applies in data collection processes to ensure equal participation and inclusion of disability communities. In all three cases, different aspects of accessibility were applied to ensure meaningful engagement and full comprehension. For example, survey questions were carried out in national sign languages by trained deaf facilitators and face-to-face interviews were used since accessible transportation can be limited, unreliable, and cost prohibitive.

To facilitate accessibility to all community members, the Global Deaf Research Institute utilized three kinds of interpreters: (1) an internal hearing interpreter for the data collection lead to be able to communicate with hearing people in Spanish (2) local deaf interpreters fluent in American Sign Language and Ecuadorian Sign Language (LSEC) to bridge communication and cultural understanding between local deaf participants and a deaf researcher, and (3) deaf community leaders who are native in regional LSEC signs and hosted community gatherings to help members complete the survey. These accessibility features were adapted to different kinds of deaf people and thus enabled full comprehension of the information.

The Culture Centre for the Deaf, Mongolia conducted data collection among deaf and hard of hearing women and tailored the approach to their needs and contexts through the following measures:

• Developed a survey with 56 thematic sections and 615 closed-ended questions tailored to communication in Mongolian Sign Language,
• Recruited experienced deaf interviewers fluent in various levels of Mongolian Sign Language,
• Digitized the survey for online use,
• Created visual presentations to support comprehension of concepts, using illustrations to explain actions,
• Conducted an orientation for deaf researchers,
• Held a three-day training session for deaf assistants,
• Translated the questionnaire into Mongolian Sign Language in three meetings, and
• Provided gender-awareness training sessions before the data collection.

Researchers also conducted one-on-one interviews with almost all the participants and reached out to women in remote districts of Ulaanbaatar, including Chingeltei, 7 Buudal, Tolgoit, and Songinokhairkhan. The survey aimed to be inclusive and reflective of international best practices, such as identifying whether the participant or any family member also had deafness. Expert consultations were held prior to the study to ensure relevance and quality. Data entry and analysis were conducted by qualified external professionals, enhancing credibility.

Conducting interviews with deaf women was challenging at times, as some participants had difficulty understanding certain questions. For example, the question “Have you ever been asked to do something dangerous?” was often unclear to them. It is also noteworthy that a high percentage of sexual harassment cases involved male acquaintances. This suggests that perpetrators are often individuals who either communicate with deaf women through sign language—such as deaf men—or those who are aware of the communication barriers deaf women face and deliberately exploit this.

With Las Piñas Persons with Disability Federation, Inc., accessibility was provided by collaborating with the different barangay chapters of persons with disabilities. Working with these groups, persons with disabilities in their area were easily identified since organizations of persons with disabilities are the most knowledgeable about their members and where they reside. After being identified, community members were interviewed. Visiting the interviewees house to house and scheduling several satellite registrations made data gathering more accessible. And those who had access to internet connections were interviewed through online surveys.

Determine the appropriate dimensions and characteristics to be included in data collection operations

All three case studies applied intersectionality into their data collection, but in different ways. In one case there was a lack of understanding of concepts, such as intersectionality and oppression. Thus, intersectionality had to be applied differently to adjust to the community. Yet in another, the community identified intersections easily. While in the third situation, intersectional aspects were adjusted according to disability type and accessibility needs. This indicates that intersectionality cannot be applied uniformly but must be adjusted according to communities and their distinct characteristics and contexts. Yet, in all cases, the community was empowered in this process and influenced the intersectional aspects included in the data collection.

In determining intersections in the data collection, the Global Deaf Research Institute discovered that generally the community did not understand the concepts of intersectionality and oppression. The community considered all members to be oppressed because of the commonality of being deaf. As a result, GDRI analyzed the system and what resources were offered and then identified intersecting barriers that way. Through discussion and consultation with the community, the lead researcher first, grouped the deaf community into four categories: (1) signing deaf people, (2) oral deaf people (deaf and hard of hearing people that do not use sign language), (3) deafblind people, and (4) limited language deaf people (from language deprivation). Then data were collected around issues found in hearing counterparts (women, LGBTQ, low-income groups) and analyzed that way. Since this was a small deaf sample, the lead researcher combined Bayesian multilevel modeling[16] with prior knowledge about systemic barriers to leverage general evidence while spotlighting deaf-specific inequities without large subgroup samples. Some intersections were identified from the data highlighting distinct gaps and barriers within the community.

Examples included:

• Deaf women faced issues around women’s health and women’s rights.
• Deaf LGBTQ people were excluded from both deaf and LGBTQ organizations: in deaf associations due to discrimination and in hearing LGBTQ organizations because of lack of accessibility (in LSE and other formats).
• Deaf indigenous people often were isolated without access to services and resources in rural and remote settings.
• Deaf refugees encountered language barriers.
• Deafblind individuals were completely excluded from society.
• Deaf limited language users experienced language deprivation and the subsequent barriers.

In the case of the Culture Centre for the Deaf, Mongolia, the deaf community identified key characteristics by analyzing responses based on factors such as age, gender, living situation, who perpetrates harassment or violence, how individuals respond to the violence, and education level.

With Las Piñas Persons with Disability Federation, Inc., the community determined characteristics and intersectionality of the data based on the needs of persons with disabilities by type of disability, age, gender, religion, and ethnicity and this information determined the inclusivity of programs.

Establish mechanisms for citizens to engage in data collection and processing and co-create/design data operations with key groups

In all three projects, community leaders established mechanisms for members to engage in the data process. They reached out to and communicated with their members in ways that they knew worked best, such as via WhatsApp video in national sign languages, conducting in-person house-to-house surveys, or using visual aids to ensure full comprehension of information. This highlights the importance of working with organizations of persons with disabilities, especially their leaders, throughout the data value chain to reach all community members, including the most underrepresented with intersecting identities.

The Global Deaf Research Institute used a mixed methods approach to collect information on the community members’ quality of life and basic needs. To reach as many people as possible, surveys were distributed in person, via WhatsApp, the national deaf association’s Facebook page, and Instagram. Additionally, deaf community leaders helped to disseminate the survey to community members. Interviews were conducted with deafblind, deaf LGBTQ, deaf women, deaf indigenous peoples, and other deaf individuals in both individual and focus group settings and adapted to accordingly.

There were challenges with the survey. The survey contained 80 questions, and, as a result, it was difficult to get responses due to the length and lack of understanding of the importance of the work. In preparation, five deaf community leaders explained to the community the purpose of the data collection in various formats: in person, video, and WhatsApp in Ecuadorian Sign Language and ensured a snowball sampling. The community leaders were incredibly important in this process. The survey utilized redcap in Ecuadorian Sign Language by a local deaf person to ensure accessibility to reach community members. The national deaf association provided clear signers in Ecuadorian Sign Language for the video and GDRI checked for conceptual accuracy.

Then an Ecuadorian deaf person reviewed and re-recorded the videos in Ecuadorian Sign Language. This process was essential to ensure the translation was clear and accurate for validity.

Similarly, the Culture Centre for the Deaf, Mongolia employed both qualitative and quantitative research methods, using pre-designed questionnaires specifically adapted for deaf women. Innovative techniques included visual aids and pictorial explanations of survey questions, Mongolian Sign Language interpretation during data collection, and use of adapted international methodologies to collect data from the deaf community.

The process of engagement included three training sessions with follow up, in-depth interviews with 40 deaf women from all seven districts of Ulaanbaatar and rural visitors.

Group discussions covered topics such as economic violence and its consequences, reproductive health issues, barriers in social participation, gender and disability-based discrimination, and suggestions for future activities. Interviews were conducted in Mongolian Sign Language by trained deaf facilitators with detailed participant observations and thematic analysis of responses. Additionally, five preparatory sessions were organized for deaf interviewers and researchers focusing on ethics, methodology, and adapting surveys into Mongolian Sign Language. Then Statistical Package for the Social Sciences (SPSS) was used to analyze the data and Excel used for data entry to minimize errors and allow thorough data validation.

Las Piñas Persons with Disability Federation, Inc. reached persons with disabilities in the community by facilitating interviews, surveys, house-to-house interviews, and satellite registration of homeowners. Additionally, university students (from De La Salle University) carried out online surveys and persons with disabilities assistance desk coordinators in each barangay carried out surveys. The Federation oversaw the data operations, which was structured as follows. Four cluster coordinators handled specific barangays for efficient coordination. Barangay chapter officers were trained as enumerators and collected data. Volunteers from each barangay reported findings to cluster coordinators, who in turn shared these findings with the Federation.

Establish partnerships/collaborations with relevant groups and organizations

Building and leveraging partnerships were important for all three communities to engage in data processes. Not all collaborated directly with key actors, but information sharing, networking, and technical support influenced data operations. Additionally, in all three cases, partnerships were strengthened because of the data collection and the data collection continued or had broader influence on society because of the partnerships. These outcomes show the multiple benefits of multistakeholder data partnerships.

The Global Deaf Research Institute collaborated with the national deaf association in Ecuador and in turn was connected to government officials, the national statistical office, and the disability office. Collaboration started at the beginning of data collection and deepened throughout the data process. The government supported by connecting GDRI to regional offices throughout the country and then with this connection, GDRI liaised with other deaf organizations and deaf schools. Afterward, GDRI shared the data collected with the national statistical office and continued to find ways to collaborate. The Global Deaf Research Institute also has partnered with CONADIS, the National Council on Disability Equality in Ecuador and shared the findings to effect policy change.

The Culture Centre for the Deaf, Mongolia established a partnership with the National statistics office of Mongolia that provided some guidance. In addition, the Centre co-developed the survey tool with the National Center Against Violence. Although the national statistics office of Mongolia did not provide direct feedback, specialists collaborated in the process, and there was a noticeable increase in similar research conducted by the government and other organizations after the report was published. Some questionnaires in later studies resembled this work, suggesting an indirect influence on national intersectional approaches.

In the case of Las Piñas Persons with Disability Federation, Inc., there was a fruitful partnership with De La Salle University. University students helped co-create and translate the data profiling questionnaire into a Google survey, which was subsequently used during online interviews. Afterward, the students statistically interpreted the results under the guidance of their professor Dr. Mitzie Conchada. The Federation did not partner with the national statistical office, although the profiling results were included in the Las Piñas City situational analysis and city profile. At the local level, partnerships were established for effective data gathering in every barangay (village). The barangay persons with disabilities association chapters collaborated with the cluster coordinators in charge in their area for easier coordination. Partnerships with the barangay league helped with dissemination of and scheduling data gathering activities in each barangay.

Publication

Ensure the right of communities and population groups to control their data to ensure safe and ethical use in all stages of data presentation and dissemination.

Different approaches were taken to ensure safe and ethical use of data. Protection and safety of data are important in the disability community, for example, for persons with psychosocial disabilities who encounter greater risk of stigma and exclusion from society.[17] [18] The most important factor that emerged was that the communities had and maintained ownership and control of their data throughout the entire data value chain.

To allow communities to provide feedback on the data collected and how they should be used, the Global Deaf Research Institute (GDRI) stayed in Ecuador for two months to analyze the data and engage with the community leaders. As an important step of participation, key findings were presented to community leaders for feedback and review. Then GDRI trained deaf community leaders on how to effectively present the findings to the deaf community for knowledge sharing and to the government to influence policies and programs. Following the training, GDRI hosted a public town hall where the trained deaf community leaders presented the findings to the deaf community, stakeholders, and government officials.

Safe use of data often involves limiting the public dissemination of data. The Culture Centre for the Deaf, Mongolia did not disclose the identities of participants. For example, the findings revealed that mothers or sisters were often the most demanding individuals in the lives of the deaf women. Some mothers strongly objected to the findings that were presented explaining that they disciplined their children out of care, not violence. Such sensitivities led the Centre to limit public dissemination of the data and instead use the data internally.

In the project led by Las Piñas Persons with Disability Federation, Inc., the data gathered were and continue to be used only by members’ chapters. The data can only be accessed by submitting an official request letter of request to the Federation indicating where the data will be used and for what purpose. Personal data are not included for protection of individuals, such as names, disability type, address, and contact information.

Ease data use and extracting insights

Data should be easy to access and understand and be used to achieve objectives. Additionally, data findings can provide meaningful information, trends, and insights to gain a better understanding of a situation and to inform policymaking. In the case studies, collected data were analyzed to understand patterns, barriers, connections, and possible solutions through an intersectional lens. Specifically, the intersectional data were important to understand the barriers and experiences of persons with disabilities encountering multi-discrimination.

For the Global Deaf Research Institute, intersectional data were included first with understanding the main services and resources that the deaf community needed and then, as described earlier, the deaf community was grouped into four categories. Data were collected around issues identified in hearing counterparts and analyzed that way. It was complex to include different intersections of deaf people, such as deaf LGBTQ people because their needs were not that different from other deaf people and it was important to avoid repetition. Finding a solution to address the analysis of this intersection continues.

In the case of the Culture Centre for the Deaf, Mongolia, all participants were deaf or hard of hearing women. Data were categorized by urban/rural residence, education level, and living arrangements. The sample included women from seven districts from the capital and rural areas. The goal was to understand experiences of violence through the lens of intersection and if this was a factor in rates of violence.

Las Piñas Persons with Disability Federation, Inc. had intersectional data results by the type of disability, cause of disability (including congenital disability, illness, injury or accident, and genetic), sex, age range (0-4, 5-12, 13-17, 18-59; these age ranges were linked to government programs), education, employment, voting population, mobility data, access to government services, and health conditions. Intersectional data were included in the data analysis of results. There were important intersectional findings, for example, more blind and partially sighted women than men live in Las Piñas. This evidence is important to effectively influence policies and programs to make them both disability and gender inclusive.

Protect data privacy and security

There are important steps needed to protect data privacy and guarantee security of the data collected. These include anonymizing the results, obtaining participants’ consent, and limiting the use of data for specific purposes, which has been agreed with the respondents. Data privacy and protection were carried out differently in the examples studied, depending on the community and the focus of the data collection. The participatory nature of the data processes ensured that the community had control over how the data were used and shared.

In Ecuador, the concept of privacy presented itself differently in the deaf community since deaf communities typically comprise their own society and everyone knows each other with little to hide. In terms of getting people to complete the survey, the Global Deaf Research Institute hosted community events to explain the importance of collecting the community’s data. Then community members collectively took the survey and deaf leaders supported those who needed it. The community answered questions collaboratively and limited language users received support from community leaders. Participants could refuse to answer any question they considered too sensitive, and their decision was fully respected without any consequence. The survey was shared via phone or in paper format. For confidentiality, all names and personal information were removed.

The situation in Mongolia played out differently. For the Culture Centre for the Deaf, Mongolia, findings were and continue only to be used internally and with participant consent due to safety and privacy concerns of the participants. The Centre avoided pressuring participants to discuss traumatic experiences, and some deaf women declined to participate stating they had never experienced violence. This was respected and they were excluded from the data collection.

For data privacy, Las Piñas Persons with Disability Federation, Inc. shared informed consent forms prior to interviews and for permission to use pictures for documentation. This process included asking the participant for consent for the video documenter to take photos during interview. Then, only the Federation or the video documentation team was allowed to use the photos for narrative reports or to post on the official Federation’s Facebook account. For online surveys, interviewers asked participants if they agreed to share the data solely for the purpose of creating programs, projects, or activities for persons with disabilities. Certain participants chose not to disclose their gender and/or disability type for protection, especially persons living with HIV and persons with psychosocial disabilities who more often encounter stigma and discrimination.

Clearly show data availability and indicate gaps in relation to key groups

Once data have been gathered, it is essential to identify whether the data coverage is sufficient to represent all groups of concern and whether there are gaps especially in relation to those who are more likely to be marginalized and/or be less visible in data, particularly those with intersecting identities. In all three communities, the findings were shared with community members in various formats and, in some cases, in different languages for different audiences. This process was a key step for the community to advocate for the creation of projects, programs, and policies inclusive of persons with disabilities, especially those most marginalized.

The publication process is ongoing for the Global Deaf Research Institute (GDRI). GDRI is preparing a white paper on the overall quality of life of deaf people in Ecuador. From this, GDRI will develop targeted fact sheets aligned with the national deaf association’s top three advocacy priorities to support their policy efforts. Depending on additional funding, GDRI will conduct deeper analyses, disaggregate results for intersectional groups, and produce stand-alone reports for each group. GDRI also has volunteer deaf researchers who will lead specialized analyses based on their expertise, similar to GDRI’s work on food and water insecurity in Nigeria, which drew on data from the needs-assessment research that GDRI conducted there.

In the case of the Culture Centre for the Deaf, Mongolia, written reports were widely available for anyone interested. The Centre shared results with community representatives and participants in a generalized format without identifying any participants.

By not collecting names, the Centre was able to overcome a major concern. From the beginning, the questionnaires did not ask for names, although participants were told (in sign language) that they could voluntarily add their name if they wished. Ultimately, no one chose to do so. This anonymity was incredibly important since it gave the women the confidence to participate more openly since they knew that their identities were protected. Naming participants from Mongolia’s small deaf communities[19] could easily make them identifiable, not only to data collectors, but also to others in the community, which could have put the women at risk. By avoiding using names, the risk of being identified was reduced while still ensuring strong participation. The only limitation was if follow-up information was needed, it was harder to connect the data back to a specific person. However, this was not common, and it was more important to ensure the safety and trust of the participants.

Las Piñas Persons with Disability Federation, Inc. provided the profiling results and recommendations for each barangay to all barangay chapters of persons with disabilities. These results and recommendations were intended to serve as the basis for programs, projects, and activities for persons with disabilities. The same results and recommendations were also given to the barangay captains or secretaries for coordination.

Data use

Ensure data access by all, with special attention to the accessibility needs of persons with disabilities and to those with limited access to technologies

Access to the data in various accessible formats was prioritized in all three case studies. The type of accessibility differed depending on the community members. For example, findings were available in national sign languages for the deaf communities. Additional alternate formats were also provided to share the findings in the most accessible manner to all persons with disabilities. Yet not all data were shared due to concerns over data protection and possible misuse of the findings.

For the Global Deaf Research Institute project, the data are accessible, but not all the data are open data for the protection of participants. In terms of dissemination, the Global Deaf Research Institute is currently engaged in different areas. First, GDRI is partnering with a deaf organization focusing on artificial intelligence to create something like ChatGPT to share data findings. This, in turn, could show how to disseminate data findings to politicians and deaf leaders globally. Second, GDRI is working with a group of deaf scientists with doctorates who can analyze the data and publish findings. Third, findings are being shared through social media.

For the Culture Centre for the Deaf, Mongolia, the data collected are primarily used internally to protect the participants and to avoid misuse of the data findings. Portions of the data are referenced in advocacy efforts and project development, for example, in statistics on human rights awareness.

For Las Piñas Persons with Disability Federation, Inc., data results and recommendations were disseminated via a printed manual. Additionally, the barangay chapter officers were able to access data through the Federation. The Federation contains a digital copy of the data profiles for all 20 barangays, which has been instrumental in developing disability inclusive activities, projects, and programs.

Increase data literacy among all users

For data to have maximum impact and value, efforts are needed to improve data literacy of all users. Two out of the three case studies indicated an increase in data literacy among community members. Capacity strengthening and information sharing in accessible and alternative formats contributed to increased data literacy.

The Global Deaf Research Institute did not find that data literacy increased in the community because of this project. Generally, the community understood that the work was important but did not understand how to use the findings. As a result, GDRI plans to develop a one-page summary with the data linked to specific issues and translate the summary into videos in Ecuadorian Sign Language for the community.

Conversely, in Mongolia, there was an increase in data literacy from the project because of direct efforts by the project leaders who carried out data literacy trainings for the participants. The deaf women who participated in the project gained a better understanding of how research is conducted, how and why data are collected, how to respond to survey questions, and why this is important.

In the Philippines there also was an increase in data literacy among the community. The data gathered were disseminated to stakeholders, duty bearers, and barangay chapters. This was done through an orientation of the results and how the data affect the disability sector. New evidence emerged from the 2021 data profiling and was subsequently shared to influence policy makers. For example, 46.70 percent, of the population of persons with disabilities in Las Piñas had a disability because of an illness, 52.5 percent of the population of persons with disabilities had hypertension, and 27.5 percent had diabetes.

Engage with relevant groups to actively promote data use and show the value of data

Targeting relevant groups with campaigns to promote the use of data helps to increase data impact on decision and policy making. Groups can use data for advocacy, for raising specific concerns with community leaders, and in some cases to influence data collection at a larger scale by government institutions. In the cases analyzed, the value and importance of intersectional data were shared in different ways, such as through powerful testimonials from individuals with intersecting identities or highlighting the importance of using sign language in the data value chain. Certainly, data results were instrumental in fostering advocacy efforts.

In Ecuador, rural, deafblind, and LGBTQ deaf people shared powerful stories via interviews. GDRI merged this information and general deaf data from surveys to highlight the data through an intersectional lens. As next steps, the data will be used to 1) advocate for policy change via a white paper with CONADIS: the National Council on Disability Equality and the National Deaf Association, 2) develop recommended priorities for the deaf community, for deaf-serving organizations, and for advocacy to support deaf people, and 3) submit the findings as a shadow report to the Committee on the Rights of Persons with Disabilities. In addition, the data will be used as baseline for the national government to evaluate their services and resources for deaf people.

In Mongolia, the data were primarily used by funders and some advocacy organizations. This study provided valuable experiences and information for both the deaf community and funders. The funding organization later initiated additional research, and other organizations working with women with disabilities began conducting studies inspired by this example. Importantly, this was the first detailed study in Mongolia focusing on different forms of violence against deaf women, including economic, physical, psychological, and sexual abuse. These data findings have become a valuable resource for advocacy and helped participants gain vital knowledge. This project was one of the first in Mongolia to use Mongolian Sign Language in research, which in turn influenced the use of similar methods in subsequent studies.

In the Philippines, data results on mobility were used to propose the creation of an accessible transportation mobile service for persons with disabilities with mobility concerns, especially wheelchairs users in emergencies and disasters. This project was funded by the Pinnovation Academy in 2022. The Federation in collaboration with the barangay Pamplona Uno modified an L300 van into an accessible, safe, and ergonomic van called A-TraMS. Subsequently, this model was adopted by the Las Piñas local government unit and included in the City’s Disaster Risk Reduction and Management Plan. In 2024, another A-TraMS was given to the Federation and currently the A-TraMS model is being adopted by other barangays in Las Piñas.

Ensure the proper use of data to prevent harm, discrimination, or stigmatization of individuals or groups

In the case studies, not all data were shared to protect the participants and their intersecting identities, and/or because the data could be misused to increase discrimination and stigmatization. The proper use of data is essential to avoid misuse or misinterpretation of data. This can be done by adhering to the principles of transparency of data use, accountability, data privacy, and individual agency.

The Global Deaf Research Institute did not share all the data because in some instances the data could be interpreted incorrectly or there was a need to protect the participants. For example, skewed data on sexual abuse, physical abuse, and rape were not shared. Additionally, certain aspects of the LGBTQ deaf community were not shared for the protection of those community members.

For the Culture Centre for the Deaf, Mongolia, only one part of the data project was shared publicly via social media: a table showing the prevalence rates of violence against deaf women in Mongolia. However, about a year later, when cases of violence against women gained public attention, some individuals selectively used these publicly shared data to claim incorrectly that “deaf people are weak and thus more vulnerable to violence.” These prevalence rates were misconstrued and misused for an agenda rather than to raise awareness. Due to the misuse of data, the Centre did not publicly share the research findings again.

Impact and Outcomes

Work with relevant groups to assess results and impacts, including policy changes

Results and policy impacts from data collection differed among the three case studies in part from challenges of limited timeframes and lack of financial support. In one instance, it is too early to assess impact since the data collection was only completed in the beginning of 2025. For another, the data project influenced policies more broadly, but not directly. This study was for a set period and has completed. For the third case, there has been significant impact and direct policy changes to include persons with disabilities. One of the reasons is because of the long-term nature of the data collection, which is ongoing and has been replicated in other locations. Financial support for data projects varied with set funding for only an established period versus ongoing, long-term financial support from different stakeholders.

The Global Deaf Research Institute fostered outreach by connecting with deaf communities and carrying out interviews. GDRI wrote a white paper and summarized key points from the findings into five categories using the social determinants of health model. The data were recently collected, and thus, impacts are not yet evident. Although, the process from an earlier national deaf needs assessment project in Nigeria was replicated and improved in Ecuador. In Nigeria, deaf leaders shared a white paper with the Ministry of Education, and concurrently GDRI liaised with the national deaf association to identify goals, then aligned these with data findings to develop a brief document.

After GDRI trained a deaf community leader to present the results, GDRI and the national deaf association hosted a public town hall where that leader shared the findings with the deaf community, stakeholders, and government officials. Presenting the results directly, and in their own language, was repeatedly described as a milestone and gave participants a clear sense of accomplishment and legitimacy. The event also drew local media coverage and interviews, notably, the president of the national deaf association was interviewed during the town hall, further elevating the community’s work and influence.

In Mongolia, there were no direct policy changes linked to the study. Perhaps, there were indirect influences such as the National Center Against Violence that gained insights through collaboration of the research and have since become more knowledgeable about issues faced by deaf women. For the deaf community, this experience enhanced their capacity to influence relevant laws and policies. Partnership opportunities expanded, including collaborations with students and faculty from the social sciences department at the National University of Mongolia, as well as with statistics professionals.

In the Philippines there was direct policy change because of the data collection, such as the creation of inclusive programs, thus helping the Federation achieve what it originally had planned. The following changes were made.

Data results revealed that many children with disabilities were not in school. During interviews parents of children with disabilities shared that their children were not allowed to enroll in daycare centers since no modules designed for children with disabilities exist and teachers are not trained to work with children with disabilities. Consequently, the Federation collaborated with a non-governmental organization, Asmae, and created a community-based enrichment program that achieved the following results.

• The creation of an inclusive learning manual for children with disabilities that includes 96 activities for different disability types.
• The provision of developmental assessments of children suspected of having a disability. This was carried out by a developmental pediatrician of those included in the community-based enrichment program. Later this was included in the annual budget of persons with disabilities in Las Piñas. To date, 500 children have been given free developmental assessments by the local government unit.
• The training of 101 daycare teachers on disability etiquette, rights, and laws; applied behavioral analysis; inclusive classroom management; and accessibility audit training.
• The establishment of an ordinance on the inclusion of children with disabilities in the Children’s Code of Las Piñas.
• The establishment of a memorandum of understanding on the adoption of the community-based enrichment program in barangays Pamplona Uno and Pamplona Dos.

Additionally, there are new partnerships. First, with De La Salle University Institute of Biomedical Engineering and Health Technologies, the University of Plymouth, and Bridges Self-Management that used the data on stroke patients. Second, a partnership was established with the University of the Philippines Field Internship Program in which the data on persons with disabilities in each barangay have been used.

Consult with relevant groups to obtain feedback on data collection and processing and involvement at all stages of the data value chain

After the data collection, the project leads met with communities to gain vital feedback. This was invaluable as lessons were mutually learned between the project leads and community members. Meeting with other stakeholders, such as key decision makers, resulted in immediate policy changes because of the evidence from the data process.

The Global Deaf Research Institute hosted community events in different cities with 300 people from which several meetings emerged, including with government officials. The impact of the work was evident from this process. When the executive director of GDRI explained the project, most people were shocked to learn that a deaf person could earn a doctorate and be successful. Being a role model and showing that a deaf person can indeed succeed was already impactful to the community. As a participatory process, CONADIS, the National Council on Disability Equality in Ecuador, plans to provide feedback on the data findings. As a next step, GDRI will incorporate the feedback into a white paper and reshare, and CONADIS will disseminate the final document to the government and public. GDRI also included the national deaf association’s feedback into the final report, and at the same time, the national deaf association shared the findings with the deaf community. In this process, first, GDRI shared statistical findings in a presentation using the social determinants of health model to divide data into five sections, then deaf leaders responded and proposed a solution. As an additional step, GDRI plans to get feedback from global organizations of persons with disabilities, including the World Federation of the Deaf, the World Federation of the Deafblind, and the International Federation of Hard of Hearing People.

The Culture Centre for the Deaf, Mongolia shared that deaf women expressed gratitude for the project, saying it accurately reflected their lived experiences. Many admitted that they had not previously recognized certain behaviors as violence but, through participation and training, learned what constitutes violence and how to cope with it. However, some deaf men expressed discomfort with the findings fearing that they could negatively impact their reputation and how others perceive and interact with them.

In the case of Las Piñas, agencies that attended the data results and recommendations launch automatically committed slots for persons with disabilities in their projects. One excellent example was with the Department of Labor and Employment (DOLE Muntaparlas cluster) and the Public Employment Services Office. After learning that more than one-third of the adult population of persons with disabilities of employable age (18-59 years old) were unemployed, they allocated 400 slots for unemployed persons with disabilities. This was under the TUPAD program in which persons with disabilities work for four hours a day for 10 days with minimum pay. The work included cleaning parks, schools, or urban gardening in designated areas. Prior to this, persons with disabilities had difficulty accessing this program.

Review and improve data agency

This step was essential for the communities and their ownership over the data and empowerment in the process. For example, there was a sense of increased awareness over issues that matter and a better understanding of how to identify and define disability type and other intersections.

The Culture Centre for the Deaf, Mongolia indicated that the findings helped deaf women better understand violence within their community and the need to unite and raise their voices. They also increased awareness of the barriers on reporting violence and accessing support, which in turn fostered advocacy for better accessibility. For example, one participant shared that she previously understood “violence” only as “rape” and struggled to express other forms of abuse in Mongolian Sign Language. After attending the gender equality training and completing the questionnaires she learned about the many different types of violence. Additionally, based on the research findings, the Centre initiated human rights training programs for the deaf community.

Las Piñas Persons with Disability Federation, Inc. shared that after reviewing the Google survey, results indicated that not all participants answered specific disability questions. This is because some interviewees were unaware of their specific disability type since disability IDs did not explicitly include this. Consequently, data on the three most common disability types were not included in the publication. Moreover, the review of the data process was done three times: during the initial assessment, mid-assessment and final assessment. After the initial assessment, the Federation realized that the enumerators (chapter officers and volunteers) were not familiar with the different types of disabilities. Therefore, the enumerators were reoriented by cluster through the cluster coordinators. To make it easier for the enumerators to familiarize themselves with each type of disability, the Federation provided a guide on specific disabilities under each type of disabilities.

Benefits of gathering intersectional data

In closing, gathering intersectional data was beneficial to better understand the unique barriers and experiences of persons with disabilities and their intersecting identities. These data ultimately influenced activities, programs, and policies to be more inclusive for a diversity of persons with disabilities. These examples highlight the impact of data on outcomes.

The Global Deaf Research Institute has shared the findings with the Ecuadorian government, deaf community, the national deaf association, and global organizations of persons with disabilities. Concurrently, CONADIS, the National Council on Disability Equality, plans to share the findings with the national statistical office and other government officials. The government plans to use the data findings as a baseline for the next four years. Thus, it will be possible to track relevant policy changes and how these affect the deaf community and their intersecting barriers.

In the project led by the Culture Centre for the Deaf, Mongolia, interesting results emerged, such as the finding that education level did not significantly affect exposure to violence. Deaf women experienced similar levels of abuse regardless of their education. Exposure to violence did not differ regardless of a deaf woman’s educational background, age, or where she lived; it occurred everywhere and could affect anyone. Therefore, the intersectional data findings help to broaden the understanding of violence against deaf women for future projects.

Additionally, the research empowered advocacy efforts. In one situation, a mother of a deaf child realized the need for proper communication and education support for parents of deaf children. In Mongolia, no structured system exists to guide parents in raising deaf children, often resulting in misunderstandings and unintentional emotional or physical abuse. This study’s findings provided the potential for institutional responses around deaf people, including sign language training and guidance for parents of deaf children.

In Las Piñas, the data were instrumental in influencing duty bearers in creating more inclusive and responsive activities, projects, and programs for persons with disabilities.

Furthermore, the data helped improve access to government services and encouraged the development of new community programs aimed at increased participation of a diversity of persons with disabilities. Specifically, the collected data were used to establish community-based enrichment programs, stroke support groups, beneficiaries of government services, and other relevant programs. For example, because of the data on health conditions of persons with disabilities, an awareness raising campaign was carried out around health and wellness for persons with disabilities with the Las Piñas health and nutrition offices.

Part III: Key Findings and Recommendations

The following section provides a summary analysis of lessons learned around intersectional disability data processes from the three case studies with key recommendations. The recommendations are intended for organizations of persons with disabilities, disability nongovernmental organizations, mainstream civil society organizations, national statistical offices, the UN system, academic and philanthropic institutions, and governments.

Data Collection

Carrying out intersectional disability data collection is valuable to identify barriers and enablers for the most underrepresented groups of persons with disabilities facing multiple forms of discrimination. This process provides increased awareness around a situation and empowers community members. Intersectionality cannot be applied uniformly in all situations but must be adjusted according to each community’s context and its distinct characteristics.

Meaningful consultation with organizations of persons with disabilities[20] and their communities is essential to identity themes of importance, such as gender-based violence, and to gather intersectional disability data. Organizations of persons with disabilities must be fully engaged throughout the data value chain, especially from the beginning. All too often, organizations of persons with disabilities are excluded, or included much later in data processes and thus have little influence on the design of data projects. This results in undercounting, exclusion, misunderstandings, and focusing on themes not relevant to the community. Co-design and co-production between organizations of persons with disabilities and partners – national statistical offices, international nongovernmental organizations, universities, and others – builds trust and strengthens outcomes. Often data are extracted from communities with no benefit. Thus, organizations of persons with disabilities need to maintain ownership of data throughout all phases of data collection and ensure data are relevant, make an impact, return, and reflect the reality of the community. These data must be accessible. In general, accessibility is a pillar for inclusion, and the same applies in data processes.

Another important theme is capacity strengthening for both organizations of persons with disabilities and national statistical offices. Organizations of persons with disabilities need training on data literacy to understand why, how, and for what the data are being collected, and national statistical offices need disability awareness training to more effectively work with organizations of persons with disabilities and to accurately collect disability data as enumerators. This leads to more and better data partnerships between organizations of persons with disabilities and other stakeholders, which is integral for information sharing, networking, and technical support to influence data operations.

Recommendations:

• Organizations of persons with disabilities must be fully engaged in data production throughout the data value chain and be included from the beginning.
• Ensure that organizations of persons with disabilities are involved in the co-development and co-production of the project design to build trust and to strengthen partnerships.
• Make sure that organizations of persons with disabilities maintain ownership of data throughout the data process. This can lead to empowerment, data literacy, and policy change.
• Consult meaningfully with organizations of persons with disabilities to identify key areas of importance and intersecting barriers to address gaps and to locate members in an accessible manner.
• Provide data capacity strengthening to organizations of persons with disabilities to build data literacy.
• Provide disability awareness training to national statistical offices, especially enumerators for more accurate disability data collection.
• Train and use organizations of persons with disabilities as enumerators, such as deaf enumerators using national sign languages.
• Ensure accessibility features are incorporated into data collection processes for full participation of all persons with disabilities.
• Include an intersectional lens in data collection and adjust according to communities and their distinct characteristics.
• Build and strengthen data partnerships between disability communities and key stakeholders (e.g., national statistical offices, local authorities) for information sharing, networking, and technical support to influence data operations.

Publication

Communities need to have and maintain control of their data throughout the data value chain, including in long-term situations. This enables the community to have trust in the process and ownership of how data are analyzed, used, and stored to protect community members and ensure data are not misused. Appropriate analysis of intersectional data can address unique barriers of persons with disabilities encountering multiple forms of discrimination. For example, intersectional disability data can provide information on barriers that deaf Indigenous women in Bolivia encounter and what polices are needed to address them. An evidence-based policy to address this could be to provide qualified Bolivian Sign Language interpreters in health settings for deaf Indigenous women to access sexual and reproductive health information.[21]

Recommendations:

• Engage in a participatory and intersectional data approach for communities to maintain ownership and control of their data throughout the entire data value chain to have influence over how their data are shared, and so the data are not misused or misconstrued.
• Support communities to have ongoing control of their data to carry out safe and ethical use of data and to protect community members.
• Foster the analysis and dissemination of intersectional data to understand unique barriers and enablers of persons with disabilities encountering multiple forms of discrimination, which are often invisible and unaddressed. This, in turn, can influence policy change.
• Data availability and gaps need to be shared in accessible formats as well as in local languages, including national sign languages, for different audiences.

Data Use

Intersectional disability data findings can improve connections between disability communities and decision makers to influence policies and ultimately to make them more inclusive and participatory. This is especially important for organizations of persons with disabilities that often are comprised of persons with intersecting identities. Sharing community testimonials is a powerful way to use data to highlight critical gaps. This qualitative data method can provide a complete picture of an excluded community to complement what quantitative data cannot. At the same time, safety and protection of data are important for different groups of persons with disabilities, including persons with psychosocial disabilities, persons living with HIV, and others. Accessibility of data is essential. Access to data must be accessible to all persons with disabilities in national sign languages, Braille, Easy Read, plain language, and other formats, including digital inclusion.

Recommendations:

• Collect, analyze, and share intersectional disability data to better understand the unique barriers and enablers of persons with disabilities and their intersecting identities for evidence-based policymaking.
• Use intersectional disability data for evidence-based advocacy efforts led by organizations of persons with disabilities to address critical gaps.
• Share data in accessible formats, including digital inclusion, keeping in mind data protection and avoiding data misuse.
• Carry out capacity strengthening and information sharing in accessible and alternative formats to increase data literacy in disability communities.
• Share data carefully and selectively to protect participants’ safety and to avoid increased discrimination and/or stigmatization.

Impact and Outcomes

Policy impacts and long-term partnerships take time to build. For this reason, it is essential to have technical and financial support to carry out long-term, sustainable data projects led by organizations of persons with disabilities, especially citizen data efforts with an intersectional lens. Examples from the three case studies profiled indicate that sharing evidence-based recommendations tailored from the data can impact inclusive policies both immediately and in the long term. Additionally, participation and inclusion of community members throughout the entire data value chain are important for community ownership of data. Review and feedback about data processes can lead to empowerment and increased awareness for communities and provide valuable lessons for both the data collectors and community members alike.

Recommendations:

• Governments and other stakeholders need to provide technical and financial support to establish long-term citizen data projects led by organizations of persons with disabilities.
• Support intersectional data projects on and led by persons with disabilities and their representative organizations to identify and address intersecting and multi-discriminatory barriers.
• Share data results and recommendations to key decision makers for immediate and long-term policy changes.
• Enable community feedback on data collection to garner valuable lessons for both data collectors and the community members and to ensure improvement and continued ownership of the data in the data value chain.

Conclusion

Carrying out intersectional disability data collection is essential in identifying barriers and enablers for all persons with disabilities, but especially the most underrepresented groups of persons with disabilities who encounter multiple forms of discrimination. Intersectional disability data findings can improve connections between disability communities and decision makers to create disability inclusive policies and programs. Data, such as these profiled, that are rich, intersectional, inclusive, and reflect the reality of a community can positively impact policymaking. To realize this, technical and financial support are needed to carry out long-term, sustainable data projects led by organizations of persons with disabilities. This report can be used to influence key decision makers to strengthen the recognition and use of intersectional disability data to address one of the groups most left behind in society.

Part IV: Resources

From Civil Society: Organizations of Persons with Disabilities and NGOs

• CBM Global Disability Inclusion, International Disability Alliance, and the Stakeholder Group of Persons with Disabilities produced a disability data advocacy toolkit for organizations of persons with disabilities and a disability data advocacy toolkit lessons learned report to assess the toolkit’s use.
• A disability data advocacy workshop for organizations of persons with disabilities was developed with the support of UNFPA Asia and the Pacific in collaboration with the Stakeholder Group of Persons with Disabilities, International Disability Alliance, Centre for Inclusive Policy, and national and regional organizations of persons with disabilities, including the ASEAN Disability Forum and Pacific Disability Forum.
• A report on citizen-generated data and persons with disabilities was developed by CBM Global Disability Inclusion, International Disability Alliance, and the Stakeholder Group of Persons with Disabilities.
• The Stakeholder Group of Persons with Disabilities established a disability data advocacy working group and related disability data listserv.
• An example of OPD-led citizen-generated data collection in the Philippines and more resources on data and persons with disabilities from CBM Global Disability Inclusion.
• In response to the Covid-19 pandemic, the Stakeholder Group of Persons with Disabilities carried out two phases of qualitative research to gather data on the experiences of persons with disabilities during the pandemic. The first phase of research took place in 2020 with global disability movement leaders. The second phase followed in 2021 exploring three countries in depth: Bangladesh, Bolivia, and Nigeria. Read more on the case studies in Bangladesh, Bolivia, and Nigeria.
• The International Disability Alliance and CBM carried out two surveys for OPDs on disability data in 2018.
• Transforming Communities for Inclusion (2023) carried out a Survey on the Situation of Persons with Psychosocial Disabilities in Institutions.
• The World Federation of the DeafBlind (2025) published data on Experiences of Mothers with Deafblindness.

• A Canadian Council on Rehabilitation and Work report (2024) on Intersectional insights on work and disability trends in Canada analyzes intersections of disability with gender, sexual orientation, and employment outcomes. It illustrates narrowing employment gaps but persisting inequities across intersecting identities.

• The Leave No One Behind partnership, hosted by the International Civil Society Centre, supports community-driven data in the monitoring of the Sustainable Development Goals particularly for marginalized groups, including persons with disabilities.

 

Statistical Agencies

• The Pacific Community Statistics for Development Division supports Pacific Island countries and territories with development of disability statistics to ensure the inclusion of persons with disability in official data and decision-making and works closely with the Pacific Disability Forum. The Pacific Group on Disability Statistics was formed in 2019 under the umbrella of the Washington Group to ensure that the Pacific produces disability statistics that are aligned to the international recommendations. Specifically, the Kiribati: disability fact sheet includes disaggregation by sex, age, employment status, and more. The disability monographs from Fiji, Kiribati (2 reports), Nauru, Palau, Samoa, and Tonga provide intersectional disability data. more information.
• Washington Group on Disability Statistics and the Center for Inclusive Policy produced a series of videos on the collection and use of disability statistics. The videos can be used to introduce concepts to new audiences, inform program administration, and train enumerators.

 

United Nations System

• Collaborative on Citizen Data aims to bring together partners from all communities within national data ecosystems to: (1) fill critical data gaps on groups that are often less visible in data, such as persons with disabilities and improve data on gender issues, to ensure they are reflected in the data for the implementation and review of the Sustainable Development Goals; and (2) enhance citizen participation in government decision-making and further advance values such as fairness, inclusiveness, openness, and transparency in statistics.
• A nationwide household survey (2019) conducted by the Humanitarian Needs Assessment Programme in Syria on the prevalence and impact of disability. The analysis provides humanitarian stakeholders insight on the prevalence of persons with disabilities (aged 12+) throughout Syria by area, age group and population type, including, resident, or non-displaced host communities; internally displaced persons; and households returning from displacement within 2019. The data also were triangulated with other responses in the survey for a more comprehensive understanding of social aspects, such as access to education, employment, and income coping strategies.
• Office of the High Commissioner for Human Rights 2018 guidance on a human rights-based approach to data. The principles are critical in terms of compliance with the Convention on the Rights of Persons with Disabilities.
• United Nations Economic and Social Commission for Western Asia has a Disability Framework and regional guidebook to improve disability data collection and analysis in Arab countries.

• The UNFPA Asia and the Pacific Disability Data Microsite contains a mapping of disability data in development in Asia and the Pacific, questions to aid understanding of disability data and inform advocacy, and a brief explainer on the Washington Group Questions on Disability.
• The UNICEF Centre of Excellence on Data for Children with Disabilities enhances the ability of stakeholders to make timely and data-driven decisions affecting children with disabilities and engages in a wide variety of activities, drawing on the principles of partnership, innovation and inclusivity.
• An Intersectionality Resource Guide and Toolkit (2021) funded by the UN Partnership on the Rights of Persons with Disabilities and developed by UN Women in partnership with OHCHR, UNFPA, UNDESA, UNICEF and civil society advisory groups.

 

Universities

• Fordham University’s Disability Data Initiative provides analyses of disability data to help advance the rights of persons with disabilities and sustainable human development for all. It includes an information guide for organizations of persons with disabilities, disability advocates, and general users, on how to work with data generated by the Initiative. The International Disability Alliance and CBM Global Disability Inclusion supported the guide.

 

Other Groups

• The Commission for the Rights of Persons with Disability (CRPD), Malta’s CRPD monitoring mechanism 2023 Report. Includes data on European disability cards issued by age, gender, and disability type (pages13-15) and data on the disability register by age, gender, and disability type (pages 16-17).

Part V: Annex

Questions for a case study on intersectional data and persons with disabilities.

This work builds on Open Data Watch’s intersectional data framework, in particular inclusive data approaches along the data value chain.

The objectives are:

• To understand how your (disability) community has engaged in intersectional data processes and how these experiences have shaped the data;
• To learn how the community collects, uses, and controls their data and empowers the community; and
• To gather good practices, gaps, challenges, and recommendations.

The definition of intersectionality in this context encompasses how people’s experiences are shaped by multiple intersecting identities, such as race, ethnicity, class, gender, age, disability, migrant status, sexual orientation and other characteristics.

The answers will be written as a case study and included in a larger report for Open Data Watch (ODW) and will be posted on the ODW website. A draft will be shared with you for feedback and verification.

Interview Questions

Background information

• Please describe the organization and community that carried out this work. Please share how we should write the community’s name.
• Please share when this took place (or ongoing) and where.
• Please share how many people were involved in this work.

Data Collection

• What was the methodology of data collection (interviews, surveys, etc.)?
• How did the community identify priorities, relevant gaps, and missing data?
• How did the community determine characteristics and intersections of the data?
• Who led and was involved in the data operations?
• Did the community establish partnerships and/or collaborations in this process?
• Did the community carry out consultations with relevant groups to determine data tools?
• Did the community co-create/design data operations with key groups, e.g., national statistical offices? If yes, please explain the process.
• If the community collaborated with the national statistical office (or other key players), how did this contribute to the national statistical office’s approach to intersectionality?
• Did the community review findings later with the broader community?
• How did you ensure that the data collection was accessible for persons with disabilities?
• How was the data collection funded?

Publication

• What was included in the publication of the data collected? How was intersectional data included?
• How did you protect data privacy and security of participants? Were there any issues and/or lessons learned around this?
• How did you ensure safe and ethical use of the data?
• How did you ensure the publications were accessible for all and benefited the community?

Data use

• How was the collected data used?
• How did the data benefit the community?
• What were the benefits of gathering intersection data?
• How did the data improve connectivity between the community and decision makers?
• How was the data disseminated? Was it open source?
• Was there an increase in data literacy among users of the data, especially from the community itself? Please explain.
• How was the data collected used for advocacy? Who did it reach?
• How was the collection of the data valuable (to the community, to others)?

Impact and Outcomes

• What feedback did you receive from the data findings?
• How did the data findings impact the community?
• Have there been any policy changes from the use and/or dissemination of the data? If so, please explain.
• Have new partnerships emerged from the data? If yes, please explain.
• Has there been a review process of the data, and any improvements made? If yes, please explain.

Please share any other comments. Thank you!

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Endnotes

[1] Open Data Watch & Data2X. (2024). https://opendatawatch.com/publications/intersectionality-data-for-development-impact/

[2] Crenshaw, K. (1989). Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine. University of Chicago Legal Forum. 1989:139–168. https://chicagounbound.uchicago.edu/uclf/vol1989/iss1/8/

[3] World Health Organization. (2023). 10 Facts on Disability. https://www.who.int/news-room/facts-in-pictures/detail/disabilities

[4] United Nations Department of Economic and Social Affairs. (2024). Disability and Development Report 2024. https://indico.un.org/event/1010238/attachments/20948/59724/DDR%202024%20Full%20report%20-%20Unedited.pdf

[5] World Federation of the DeafBlind. (2025). Highlighting the Experiences of Mothers with Deafblindness. https://wfdb.eu/2025/08/01/highlighting-the-experiences-of-mothers-with-deafblindness/

[6] CBM Global Disability Inclusion & UNFPA Asia and the Pacific. (2022). Are persons with disabilities included in the effort to leave no-one behind? https://asiapacific.unfpa.org/sites/default/files/pub-pdf/cbm.6.1.pdf

[7] United Nations Department of Economic and Social Affairs. (2024). Disability and Development Report 2024. https://indico.un.org/event/1010238/attachments/20948/59724/DDR%202024%20Full%20report%20-%20Unedited.pdf

[8] United Nations. (2024). Global Digital Compact. https://www.un.org/global-digital-compact/en

[9] United Nations. (2025). Compromiso de Sevilla: the Fourth International Conference on Financing for Development outcome document. https://docs.un.org/en/A/CONF.227/2025/L.1

[10] In response to the Covid-19 pandemic, the Stakeholder Group of Persons with Disabilities carried out two phases of qualitative research to gather data on the experiences of persons with disabilities during the pandemic. The first phase of research took place in 2020 with global disability movement leaders. The second phase followed in 2021 exploring three countries in depth: Bangladesh, Bolivia and Nigeria. Read more on the case studies in Bangladesh, Bolivia, and Nigeria.

[11] Transforming Communities for Inclusion. (2023). TCI Survey on Situation of Persons with Psychosocial Disabilities in Institutions. https://tci-global.org/wp-content/uploads/2024/06/Survey-Report.pdf

[12] Collaborative on Citizen Data. (2024). The Copenhagen Framework on Citizen Data. Statistical Commission, fifty-fifth session. https://unstats.un.org/UNSDWebsite/statcom/session_55/documents/BG-4c-CGD_Framework-E.pdf

[13] Taylor, M. (2016). Improving education for Deaf and Hard of Hearing students in California. Legislative Analyst Office. https://lao.ca.gov/reports/2016/3498/education-DHH-students-092116.pdf

[14] World Health Organization. (2025). WHOQOL-BREF. https://www.who.int/tools/whoqol/whoqol-bref

[15] CBM Global Disability Inclusion. (2024). Preconditions for Inclusion: Guidance for organisations of persons with disabilities. https://cbm-global.org/wp-content/uploads/2025/03/2.-KP02-Preconditons-FINAL-ENGLISH.pdf

[16] Stata. (2025). Bayesian multilevel models https://www.stata.com/features/overview/bayesian-multilevel-models/

[17] Human Rights Watch. (2020). Living in Chains: Shackling of People with Psychosocial Disabilities Worldwide. https://www.hrw.org/report/2020/10/06/living-chains/shackling-people-psychosocial-disabilities-worldwide

[18] World Network of Users and Survivors of Psychiatry. (2021). World Network of Users and Survivors of Psychiatry statement to the United Nations Committee on the Rights of Persons with Disabilities (UN CRPD Committee), 8 March 2021. https://wnusp.wordpress.com/2021/03/12/wnusp-statement-for-un-crpd-opening-session-8-march-2021/

[19] At the time of the data collection, the national data sources (the 2010 census) indicated there were a total of 11,700 individuals with deafness and speech disabilities, but this was not disaggregated by sign language users. The Centre approximates that the population of deaf sign language users in Mongolia was less than 3,000 people.

[20] United Nations Convention on the Rights of Persons with Disabilities. (December 13, 2006). Article 4.3. https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities

[21] Federacion Boliviana de Sordos, University of Rochester, & World Federation of the Deaf (2024). Pilot Study of Deaf Indigenous Bolivian Women’s Health Experiences. https://cbm-global.org/resource/deaf-indigenous-bolivian-women-health-study

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