3. What is disability- a working definition for this manual

Disability is not something that a person possesses. It is not a permanent state that is inherent in a person. A physical, intellectual, mental or sensory impairment can be more or less disabling depending on the context in which it occurs. Disability is not an 'all-or-nothing' matter. We often use one single word, "disability", to cover many situations. Some disabilities can be highly visible, some are not; some are mild, others are more severe. Some forms of impairment or health conditions may result in temporary loss of function, while others are permanent in nature. Some disabilities can be present at birth; others may occur at any time. During his/her life-cycle a person can experience any or all of these situations.

A working definition of disability for this manual

Definitions of disability are diverse, and usually designed according to their purpose (e.g. depending upon whether the definition of disability is needed for designing social security /disability benefits or for addressing discrimination cases on disability grounds). For this reason, we propose a definition of disability for this manual which is also 'fit for purpose'. The purpose of this manual is to support the inclusion of the perspectives of persons with disabilities in the management of the project cycle. Therefore the definition of disability which we propose is not 'fit for all purposes' but only for this purpose: to capture the aspects of disability which lead to persons with disabilities being excluded in the management of the project cycle.

Since we are addressing the exclusion of the perspectives of persons with disabilities; we will begin by defining who we mean using the definition of persons with disabilities from the UN Convention on the Rights of Persons with Disabilities: (UNCRPD) 'Persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others'.

For our current purpose, we define disability itself as a difficulty in functioning at the body, person, or societal levels, in one or more life domains, as experienced by an individual with a health condition or impairment in interaction with contextual factors (1).

'What is disability?'
Maya is 34 and lives in a rural area of India. In a road traffic accident she injured her back. She was taken to hospital and diagnosed as having a spinal cord injury (health condition or physical impairment). She cannot move her legs; she can sit up, but cannot walk (difficulty in functioning). Her family takes her home as they cannot afford further rehabilitation or hospital based care (her economic situation is a barrier) - there is no system in place to ensure her costs would be covered through social welfare, etc (the policy environment is a barrier). Maya is given a wheelchair but her home is on a hill, with steps leading up to it, so she cannot independently move around herself (the physical environment is a barrier). While she is physically able to sit up and can do many things, she often stays at home; the perception of her community is that she can no longer take part in many community activities (the attitudes in her environment are a barrier to her participation). Maya has a disability which is a combination of all these factors. An impairment or health condition can be more or less disabling depending on the context in which it occurs.

Disability is an evolving concept

While in the past disability was considered to be a purely medical or individualised concept, it is now largely accepted that this medical or individual model does not accurately describe the concept of disability; it neglects the highly important contextual factors which may greatly increase the functional limitations a person experiences. Maintaining medical or individual views of disability will, therefore, not result in the inclusion of persons with disabilities in society. In order to include the perspectives of persons with disabilities in any process the contextual factors which serve to exclude person with disabilities need to be recognised and addressed.

Contextual factors which are disabling barriers

Physical barriers:

Inaccessible buildings, schools, clinics (high concrete platforms, steps, narrow entrances, slippery floors, etc.), transport, roads and infrastructures.

Institutional barriers:

Lack of consultation with persons with disabilities and their representative groups, legislation, policies and strategies that discriminate people with disabilities, (or absence of anti-discrimination legislation policies and strategies), disability seen as a "specialist" or welfare issue

Attitudes and social barriers:

Negative behaviour of family, community, authorities; prejudice, pity, overprotection; social stigma and discrimination against persons with disability and their families (e.g.: the whole family may be ostracised or isolated for having a disabled family member).

Different types of impairments

Defining disability by referring to impairment reflects a view of disability that resonates with the medical model we mentioned above. However, for the purpose of planning development activities it is worth knowing the different functional limitations that persons with disabilities can have, in order to be able to understand the ways in which situations need to be adapted.
Ronald Wiman and al. define the different types of impairment as follows (2):

Difficulties in moving

Approximately 40% of all people with a disability have some difficulties in moving (prevalence: 20-25 /1000).

Neurological conditions

Constitute the second category in prevalence. This category includes intellectual disability, mental illness and epilepsy. This group of disabilities covers 30% of all people with disability (9-15 /1000).

Visual and hearing or speech difficulties

Third and fourth common categories, with a prevalence of 15% in population with disability; 5-8/1000 in the general population)

(1) The Lancet, 'The Definition of disability : what's in a name ?' Volume 368, Number 9543, 7 October 2006 http://www.thelancet.com/journals/lancet/article/PIIS0140673606694981/abstract
(2) STAKES: Label us able. http://www.make-development-inclusive.org/docsen/finland.pdf and Wiman R. et al : Meeting the needs of people with disabilities - a technical note for the World Bank Poverty reduction sourcebook. 2002

This manual is part of the project "Disability mainstreaming in Development Cooperation", supported by DG Employment and Social Affairs of the European Commission. The contents of this manual are the sole responsibility of CBM.