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EUD Census Report: Why a census? 

EUD Census Report: 

Background information: Why a census? 

On 23 April 2024, the European Union of the Deaf (EUD) organised an interactive workshop titled “Is it time for an EUD Census?”. Through this question, EUD aimed to seize the momentum of its 40th Anniversary taking place in 2025 to build a consensus among its members, the National Associations of the Deaf (NADs), on the necessity of collective transnational actions towards collecting data on deaf people and their interactions with various areas of society. This data should be disaggregated by intersecting identities and experiences comprising of their racial or ethnic origin, languages, gender identity, religion, disabilities, socio-economic status, sexual orientation, age and any other layers of identities. 

The data will be collected and used at the local, national and regional levels by the EU, its Member States, Civil Society Organisations and any relevant stakeholders.  

The importance of quality and accurate data collection on deaf people cannot be understated. With approximately one million deaf people in the EU, the EU deaf community represents 0,05% of the European population. However, there is little to no official data on deaf people at the EU and national levels, preventing meaningful policies and projects from being undertaken. This lack of quality and accurate data prevents evidence-based policy documents and project proposals from being undertaken as was highlighted in the 2023 EUD report on data collection on deaf people.  

Quality and reliable disaggregated data on deaf people establishes a snapshot spotlighting the actual situation encountered by deaf people, including the challenges and opportunities of deaf people in using their national sign language in all areas of society. This will build the foundations of inclusive policies and programmes fostering the opportunities for deaf people to contribute to their societies through the use of their national sign language.  

In 2023, the EUD released its Policy Recommendations on the Establishment of Targets on the Employment of Deaf People which highlighted the lack of disaggregated data on deaf people in their access to the open and inclusive labour market in the EU.  

However, not only is there a significant lack of data at the EU and national levels but also, when existing, there are disparities in the methods used to collect data on the deaf community. These disparities are evident in the diverging definitions of deaf people, some of them through a medical lens (e.g. percentage of hearing loss), others through a linguistic perspective (e.g. the native language). With the latter, it is problematic as some deaf people learn the national sign language later in their life and, therefore, cannot consider them as their native language per se while it is their preferred language in their everyday life.  

The last few years have seen some positive developments at the EU level with Eurostat recently releasing its thematic page on disability. Whilst this is a step in the right direction, nothing is currently highlighting the realities of deaf people in the EU.  

Collecting data on deaf people will contribute to meaningfully achieving the EU’s Disability Rights Strategy 2021-2030. Furthermore, Article 31 of the UN Convention on the Rights of Persons with Disabilities (CRPD) recognise the obligations of its States Parties, including the EU and its 27 Member States, to progressively adopts measuring allowing data collection disaggregated by disabilities, including deaf people.  

In this regard, with the approach of its 40th Anniversary, EUD believes in the importance of holding a census on deaf people living in the EU. Accordingly, EUD held an initial meeting with its NADs to discuss the challenges and opportunities to collect data for deaf people at the EU level. 

Summary of the discussion held during the workshop:  

Data Availability and Accessibility: Several countries, including Denmark and Bulgaria, highlighted the challenge of accessing comprehensive data on various aspects of the deaf community. While some areas, such as the number of professional sign language interpreters and national sign language users, have available statistics, crucial areas like mental health, healthcare access, and the preference for disability allowances over employment lack adequate data. Efforts to obtain data from governments have been hindered by internal policy constraints stating that such national data cannot be shared with the public, further hindering efforts from NADs to work with their governments to improve this situation. The lack of clarity regarding the number and distribution of deaf people, for instance who may be embedded in the hearing community and not known to the deaf community, further complicates support efforts in these countries. 

Regulatory and Policy Constraints: Issues related to regulations and policies also hinder effective data collection efforts in countries such as Croatia and Spain. Medical approaches in national law concerning “hearing impairments” in Croatia fails to adequately address the distinct requirements of the deaf community as rights-holders, necessitating advocacy efforts for accurate representation, particularly concerning deaf children in mainstream educational settings. In Spain, recent regulations mandate the government to focus on various aspects concerning sign language users, yet significant gaps persist in critical areas such as education and employment statistics. 

Collaboration and Partnership: Positive collaboration between NADs with their governments are evident in countries like the UK and Romania. While the UK government conducts a census every ten years, concerns were highlighted regarding the accuracy of this data in terms of the number of sign language users. Ireland reported a similar concern regarding the inaccuracy of government data on sign language users. Collaboration between government agencies and NADs could enhance data collection methods and improve the reliability of statistics. Similarly, Romania showcased collaboration between the deaf community and the government, emphasising the need for improved data collection mechanisms to address the deaf community’s unique requirements effectively.  

Standardisation and Definitions: The need for standardised data collection methodologies, for instance, the provision of national surveys in national sign language(s), and clear definitions of terms such as “deaf” and “sign language user” was emphasised across multiple countries, including Belgium and Germany. Moreover, a preference for data collection on “sign language users” over “deaf people” was expressed, given there are hearing people who also use a national sign language e.g. CODAs. However, it was noted that deaf people have different barriers than hearing people. There was expression from NADs of the need for more comprehensive data aligned with the CRPD, highlighting the importance of accurate representation of the deaf community. What’s more, the challenges in defining terms and determining responsibility for interpreter costs highlights areas for improvement in these practices. 

Privacy and Compliance: Some representatives expressed their concerns about data privacy and GDPR compliance. This aspect is critical in ensuring the trust and participation of the deaf community in data collection initiatives. 

Engagement and Representation: A crucial point was highlighted by a few, namely their concerns about ensuring all deaf people can be reached effectively. If all deaf people cannot be reached or do not wish to participate, will mean that the data from the census won’t be an accurate representation, with inaccurate statistics, of the situation of deaf people at the national level.  

Next steps and ways forward: 

The workshop “Is it time for an EUD Census highlighted several ways forward. Here are the main takeaways that will determine the next steps towards establishing an EUD Census:  

  1. Establishing a working group on data collection that will be constituted of NADs representatives and the EUD, through either the Board, the Staff or both. 
  1. Establishing a clear standardised methodology of research and the scope of the research. 
  1. Establishing research questions as well as determining the topic to be covered (e.g. number of deaf people, access to education, access to employment, etc.).  

All the publications from 2022 - 2026 are co-funded by and produced under the European Commission’s Citizens, Equality, Rights and Values (CERV) Programme.

Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Commission’s CERV Programme. Neither the European Union nor the granting authority can be held responsible for them.

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