What are we talking about when we talk about disability?
Disability is a constantly evolving concept. There are many different definitions of disability and the language used around the concept changes rapidly. Persons with disabilities are far from being a homogenous group since the notion of disability accommodates at least 1 billion different lived experiences. All of this makes the understanding of disability complicated and the goals of disability-inclusive development hard to define.
To frame ways of understanding the concept of disability, different approaches to disability have been outlined. These approaches are often called ”models of disability” and they mirror the ways in which disability is addressed and related to.
Models of disability
The different approaches to disability shape – consciously or unconsciously – the way we think and behave when dealing with the concept of disability. We are all affected by them and they often mix together. Among others, there are ‘the moral/religious model’ (disability as an act of god), ‘the identity model’ (disability as an identity), ‘the cultural model’ (disability as culture), ‘the economic model’ (disability as challenge to productivity) and ‘the limits model’ (disability as lived experience). The four most common and perhaps the most central models in the development context are ’the charity model’, ’the medical model’, ’the social model’ and the ’rights based model’. I will describe these four shortly and somewhat simplified:
The charity model has a long history of top-down approaches with the classic power relation between givers and receivers. It defines people with disabilities as suffering victims in need of help and care. The charity model focuses on meeting the (often material) needs of the beneficiaries.
The medical (or individual) model considers disability as a medical problem within the individual. The aim of this model is to cure people with disabilities so they can become ’normal’ – something that of course implies that they aren’t normal to begin with.
The social model sees disability as a result of discrimination and barriers to participation in society. This model separates ’disability’ from ’impairment’ in a similar way that the concept of ’gender’ can be separated from ’sex’. Disability is thus a social construction that varies in different contexts. It is society that disables a person by attitudinal, environmental and institutional barriers.
The rights based model is based on the social model and shares the foundation that it is society, not the individual that needs to change. It is based on the principle that human rights are an inevitable right for all human beings – people with disabilities included. Changing society and removing barriers that prevents people from for instance health care or work is therefore not any form of charity, but a basic human right that any person can claim.
The power to choose
These disability models constitute the base on which the concept of disability is formed and reformed also within most international development projects and corporations and within ICT4D. Obviously, the rights based model form the premises for the UNCRPD (UN Conventions on the Rights of Persons with Disabilities), the single most significant global agreement on disability and development. However, the rights based model has also received critique. Due to its minority world origins it is claimed to exercise cultural hegemony and to be culturally insensitive. It is also criticized for promoting an one-size-fits-all approach.
A crucial question is how to realize the rights in practice, in real lived lives of 1 billion different human beings with different kind of needs?
And who gets to choose which rights are to be prioritized for whom?
In Development as Freedom (1999) the Nobel Prize winner in Economics Amartya Sen has tackled these questions by creating an alternative perspective to the human rights based approach in which the mandate of development itself is redefined in human rights terms. Sen presupposes that development equals an increase in freedom, i.e. an expansion of what he calls ‘capabilities’. His theory of capabilities is based on an ethos of giving people the power to choose for themselves what is of most value for them. This freedom to choose, as Richard Heeks writes in his latest book Information and Communication for Development (ICT4D), consists of two things: the ‘functionings’ – the actual ability to manage/do something – and the ‘capabilities’ – the abilities to achieve the valued freedoms. In her article ICT4WHAT? Dorothea Kleine claims that “Given the enormous potential of ICTs to give individuals choices, and indeed a greater sense of choice, Sen’s approach is of particular interest to those working on ICT and development.”
It is, I argue, also of particular interest for a disability-inclusive ICT4D agenda. Giving the individual disabled person the choice to define his/her own approach to disability and subsequently his/her own goals of capabilities, enables the use of ICT4D outcomes in real life.
written by SH