The Creation of Disability through Data Collection and Dissemination of Lists

Or: The Effects of Education for All through Data on All

von Julia Biermann

One question has haunted me for a long time: Is it necessary to solidify disability as a classification factor to overcome stigmatisation and marginalisation due to disability? To approach this question I refer to the new Post-2015 development agenda, in particular the education related goals and the formulation of indicators that would enable to measure respective progress. First, I argue that this paradox – solidifying disability to diminish its impact – derives from the bureaucratic logic of the international system that requires that persons with disabilities show up in its lists. Second, I argue that the Post-2015 world will thus “create” more people with disabilities in order to fight their stigmatisation and marginalisation. My point is that lists, compiled to prove indicators, not only produce legitimacy, but also disability.

Currently, the UNESCO Institute of Statistics (UIS) has launched a global consultation on Post-2015 education indicators for the reshaped education goal of ensuring equitable and inclusive quality education and lifelong learning for all by 2030. This goal is enshrined in the so-called Muscat Agreement and was adopted during the 2014 Global Meeting on Education for All in Oman. To monitor future progress, this project necessarily requires data, for example on enrolment and completion of schooling but also on abstentions and early dropouts. Furthermore, data will also need to be disaggregated for example by gender, location, socio-economic background and dis/ability, because the goal targets all (!), thus including those who face a disadvantage, difficulty or disability. To be able to evaluate whether the goal and its seven targets are met by international programs and funding, the realities of schooling need to be transformed into lists and are thus incorporated into the bureaucratic logic of inter/national organisations and their accounting systems.

Lists comprise indicator-based data collections, which require certain models and concepts – for example of disability. Until today, however, only little data is available on persons with disabilities, because of two relevant aspects: First, persons with disabilities were and still are overwhelmingly marginalised and neglected at the societal and policy level all over the globe, which however started to change in the wake of the UN-Convention on the Rights of Persons with Disabilities. Secondly, what actually counts as a disability is ultimately tied to the context itself. Accordingly, the UN Statistic Division states: Due to differences in the concepts and methods used to identify persons with disabilities, prevalence rates should not be compared across countries”. But how can we then compare the education of children with disabilities within the post-2015 inclusive development framework?

The paper “Towards indicators for a post-2015 education framework” elaborates on the possibilities and challenges “to globally track the targets (which) should ideally meet a range of standards that ensure technical strength, feasibility, frequency of reporting, cross-national comparability and availability over time”. The paper also refers to difficulties in assessing disability and thus does – at this stage – not contain related indicators. Accordingly, the currently discussed indicators do not allow to assess the inclusiveness of education systems, because this would not only require to know how many children with a disability have access to, are in and complete schooling, but also which children do have an impairment or disability. It seems as if this circumstance constitutes a deadlock to the bureaucratic logic itself – the need of objective data on disability vs. the ultimate context-dependency of disability concepts and data.

Nonetheless, global monitoring requires global indicators based on concepts that then become global as well. At this point, Rottenburg`s work on “Far-fetched Facts” gives inspiring insights into the “Secret of Lists” and their ultimate consequences:

“A list is a record of things or abstract statements that have been removed from their context and written down one after another as facts. The classification system and selection principle according to which the facts in a list are chosen is not included in the list itself. (…) These observations seem trivial at first glance. This is because the classification and selection work that precedes every list has successfully been rendered invisible. Using the language of Mary Douglas, the classification system that the list is based on has become so well institutionalized that it is erroneously viewed as being a characteristic of the thing itself.” (p.137).

 Against this background, I argue that indicator-based lists and surveys not only bring out and solidify disability, but transform disability into a necessary and inescapable attribution. The attempt to make societies more inclusive and in which disability becomes less of a barrier requires to emphasise disability even more. Thus, the question remains whether this attribution might lead to more visibility, emancipation and also more resources or whether it instead increases stigmatization. This paradox needs to be carefully examined in each context, project and survey – as each of it creates disability.

The UIS global consultation runs until 30 January 2015.

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