2. What is disability?

Introduction

It might appear surprising that something apparently as obvious as the meaning of disability should excite controversy. Nonetheless, for many years this question has been the subject of passionate debate. These debates are directly addressed in two Disability KaR projects (cited below) and figure in one way or another throughout all the work done under the Programme. The aim of this section is to outline the findings and to consider why the arguments are important for shaping policies and practices concerned with disability issues in developing countries.

Medical understanding

What most often passes for a 'common sense' understanding of disability is that it is what 'is wrong' with someone. So, 'disabilities' would include blindness, deafness, the various conditions that make it difficult or impossible to walk or to speak, mental illnesses and such things as Down's Syndrome and epilepsy.

Those viewing disability through this medical lens concede that it is unfortunate that many disabled people face social exclusion or poverty but these are seen as the result of the natural functional limitations imposed by their 'disabilities'. Furthermore, as the problem is primarily medical, solutions are generally given over to various caring professionals either to cure, rehabilitate or to protect the individual with a disability. In disability and development these processes usually take place within a charitable context.

Social understanding

The international disability movement (as represented by disabled people's organisations - DPOs) has offered a radical alternative to the medical conception of disability by asserting that people are disadvantaged not by their impairments, but as a result of the limitations imposed on them by attitudinal, social, cultural, economic, and environmental barriers to their participation in society.

Rejecting the idea of abnormality, although not the importance of medical intervention or impairment prevention, this 'social model' understanding points to the normality of impairment within any population.

What is not normal, it is argued, is being discriminated against and socially excluded because of having an impairment. This is what is disabling.

Nothing about us without us!

In the Disability KaR paper The social model of disability, human rights and development (Ref. C1) it is argued that by seeing impairment as an ordinary part of life, and disability as the result of discrimination and exclusion, the social model underpins efforts to move disability from the medicalised, 'special needs' ghetto and into the mainstream of development policies and practices.

The social model has also promoted the idea that disabled people should be actors in their own lives, rather than passive recipients of care or charity. This equates almost exactly to current thinking on a human rights-based approach to development, increasingly adopted by government and international development agencies throughout the world. This is explored in the Disability KaR paper, Disability and a human rights approach to development (Ref. C4). The Disability KaR Programme exemplifies this approach. When disabled people were brought in to manage the Programme, active engagement with Southern DPOs increased. This resulted in a quantum shift in the quality and depth of understanding of disability. The research clearly reflects this.

By projecting disabled people into a leading role in defining and controlling their lives, the social model also offers a powerful device for the liberation of those who remain the poorest of the poor in all countries, both developed and developing.

The model is so powerful because it illuminates the fact that the roots of poverty and powerlessness do not to reside in biology but in society. The former is, for most disabled people, immutable; the latter, through collective action, can be transformed. A human rights approach to development offers both the platform for such societal transformation and a way for disabled people to transform their sense of who they are - from stigmatised objects of care to valued subjects of their own lives. For people who are poor and oppressed this is a key starting point of any meaningful process of social and economic development.

Lessons from gender and development

In the Disability KaR paper Mainstreaming disability in development: Lessons from gender mainstreaming (Ref. C3) it is argued that a social-model conception of disability provides a clear parallel with the Gender and Development paradigm in terms of understanding disability as socially constructed, as resulting from barriers to equal access, as well as from the reality of unequal power relationships across the entire spectrum of development work from policy to practice. As with gender, seeing disability in this way is fundamental to devising effective strategies to tackle the disabling consequences of discrimination and social exclusion.

Trying to capture an illusive concept

Although a social-model conception has helped to change the emphasis of development interventions, uncertainty remains when the term 'disability' is used, as it is often applied to 'impairment', rather than the process of becoming disabled. This is due partly to the dogged persistence of stereotypical assumptions about disability and partly to the different realms (i.e. social welfare, health, impairment prevention) in which the concept is applied. Also, because disability is socially constructed, it has been difficult to capture in a way that allows simple cross-cultural comparisons. This has made international agreement on meaning virtually impossible and, therefore, has undermined attempts to collect uniform statistical information.

Recently the World Health Organization devised new guidelines (the ICF - International Classification of Functioning, Disability and Health) in an attempt to both overcome some of the aforesaid difficulties, and to harmonise the competing models outlined above.

The ICF takes into account the complicated interrelationships between health conditions, personal aspects and negative environmental (in the broadest sense) factors that, it claims, determine the extent of disablement in any given situation. Although it has been widely seen as a definition, the ICF is more of a framework for making different assessments of disability for different purposes. The new ICF has been accepted by the World Bank and many other key development organisations and seems set to become the gold standard for understanding and measuring the extent of disability. However, as pointed out in the Disability KaR paper Is disability really on the development agenda? (Ref. C2), critics have argued that the ICF represents little more than medical model thinking clothed in social model language, particularly as many professionals continue to pay little attention to environmental impacts and focus instead on impairments.

Nonetheless, it is claimed in the ICF that it '… provides an appropriate instrument for the implementation of stated international human rights mandates as well as national legislation.' It remains to be seen whether it will be used in a way that is helpful in the practical business of designing mainstream development policies and practices that break with traditional medical approaches, challenge accepted power relations and seek to promote human rights by bringing disabled people into the heart of their societies.

The question raised above is tackled in the Disability KaR report on data and statistics (Ref. D5). Researchers working with DPOs in Southern Africa on assessing the living conditions of disabled people have in previous studies attempted to operationalise the terminology in the ICF and apply a disability concept that is founded on activity limitations and restrictions in social participation. Their research under Disability KaR was aimed at exploring the mechanisms needed to ensure how these findings can be used in the best interests of disabled people.

Conclusions

Despite the existence of the ICF, disability continues to be a deeply contested concept. The variety of cultural settings in which it is defined and the different purposes to which such definitions are put would be enough to insure this is true. Added to this is the fact that disability, widely recognised as being the result of systematic discrimination, raises difficult and often uncomfortable personal, social and political questions.

So what is disability?

Disagreements over the answer to this question will continue. However, all the work done under the Disability KaR Programme has adopted, in one form or another, a social model understanding of disability as a starting point. This is not only consistent with what the international disability movement has been arguing for decades, but also with the stated policies of an increasing number of multi- and bi-lateral development agencies.