Data? Did someone say 'data'?
The most recent definition of disability, that of the United Nations (UN) Convention of 2006, shifts the focus from individual characteristics to contextual ones, such as environment and society, resulting as a context-generated condition of disadvantage. From this point of view, the contemporary definition includes any person, even without a certified disability, who as a result of specific events and negative interaction with the environment is limited in his or her everyday life. An illness, ageing, an accident, can give us impairments, even for a short period of time, which in interaction with the environment can limit us, for example, in our ability to move, to have relationships, to work, or to access goods and services.
Come to think of it, probably each of us has experienced, even for a short period of time, a condition of disability.
The UN definition is in fact a definition that brings us closer together, makes us all more similar, in our possibilities and limitations, towards a greater mutual understanding. Yes, but how many of us are there? Many, probably, more than we can imagine, although to date we do not know the exact number. Having up-to-date, accurate and usable data would allow us to better frame the phenomenon, opening up new possibilities and perspectives to rethink goods and services, streets, neighbourhoods, cities, and imagine a fairer and more inclusive society. But first we must recognise and overcome the many obstacles that limit access to and use of data on people with disabilities.
If we wanted to tell the story of disability through its data we would immediately find ourselves in a condition of disability, prevented from research, collection, analysis and processing due to structural and contextual barriers. What are the structural and contextual barriers that limit access to disability data?
Different data, different mappings
Different surveys, databases, and surveys use different criteria to map the group of people with disabilities. For example, data from the National Social Security Institute (INPS) may use the number of people receiving a disability pension as the starting point for counting people with disabilities. In contrast, ISTAT sample surveys use questions in which a central feature is that limitations are self-reported.
Different platforms, different data
The first limitation is related to the search for information: different data on different portals. The available databases are those of ISTAT. e Disabilitàincifre, available on the website of the national institute of statistics, as well as the database of EUROSTAT, the statistical office of the European Union. In particular, Disabilitàincifre is the main portal on disability data in Italy. When we started the Disabled Data project in February 2022, we discovered that the site was inactive, and had probably been inactive for months, making it effectively impossible to consult data on persons with disabilities in Italy. Through requests and reminders to ISTAT, the site became available again at the end of April 2022.
Which portal to turn to in order to find a specific piece of data is an unanswered question, as necessary as it is: sometimes one can find conforming data from the same survey, sometimes different ones.
Different platforms, different possibilities
The functionalities offered by portals differ, as do the architecture and presentation of information. For example, Disabilitàincifre does not offer the possibility to display data visually but only in tabular format, limiting navigation to the Italian language, whereas EUROSTAT is available in French, English and German, but not in Italian. There is also a difference in the geographical dimension between the two statistical institutes: on EUROSTAT it is possible to compare data from the different European countries, while on ISTAT, where possible, it is possible to compare data from the different Italian regions. Finally, the impression is that the approach of both platforms is aimed at an audience of insiders, or people with advanced skills and familiarity with the platform.
A further obstacle is the presence of surveys conducted in single instances and never repeated. For example, one finds surveys conducted only once, such as the 2014 survey on violence against women, or the 2011 Labor Force Survey or EHSIS on health, from 2012. Without continuous data, it becomes impossible to understand trends, the impacts that laws, reforms and interventions may have had on such central issues.
Adequate data collection
Article 31, 'Statistics and data collection', of the 2006 UN Convention requires States Parties to engage in the collection of statistical data on persons with disabilities. Yet, a complete list of persons with disabilities is lacking in Italy to date, and with it the qualitative and quantitative information that would allow us to know this collective in depth.
In the light of the obstacles noted, it becomes more understandable how the statistical study of disability is a complex process, where the resources and methodologies put in place clash with an ever-changing phenomenon, compromising the continuity of research.
Yet, despite the existing limitations, it is thanks to these same data that we now know that people with disabilities report considerable disadvantages compared to the rest of the population.
"Knowing the World of Disability" is in fact the most recent and comprehensive observation on social inequalities between people with disabilities and the rest of the population, published in 2019 by ISTAT. Interesting and worrying indications emerge from reading it, for example the strong regional disparities in terms of the presence of disabilities, or the significant economic differences between people with disabilities and the rest of the population. The publication, as well as the data it presents, are an important testimony to the need to pursue and improve the estimation and monitoring of persons with disabilities. In this regard, it is worth mentioning the Register on persons with disabilities, the ambitious project launched by ISTAT in 2020, which is currently being developed.
We have launched Disabled data, a project of Fightthestroke.org, in collaboration with OnData and Sheldon.studio, to shed light on data on people with disabilities. The platform is developed in two directions: on the one hand, to open a window on the data associated with the phenomenon of disability, and on the other hand, to support citizens in researching and understanding the data currently available, as described in Article 31, "Statistics and Data Collection", of the UN Convention on the Rights of Persons with Disabilities, approved by the General Assembly on 13 December 2006 and ratified by Italy with Law 18 of 3 March 2009. The data reported are extracted from ISTAT and EUROSTAT, consolidated and filtered, thus effectively reducing the number of platforms a person must otherwise visit to obtain official statistics. Finally, they are presented in a simple, intuitive way and accessible to all in a dashboard.