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DISABILITY DEFINITION, MODELS, and MAINSTREAMING
POSITION PAPER
Courtesy of WHO
World Vision International
Disability Working Group
Updated: May 2007
1
DISABILITY DEFINITIONS, MODELS AND MAINSTREAMING
POSITION PAPER
This position paper aims to bring World Vision colleagues an understanding on disability issues in
order to prepare the organisation towards mainstreaming and inclusion of disabled children and
adults. Without the inclusion of disabled children and adults in our work, ‘Our Vision for Every Child,
Life in All Its fullness, Our prayer for Every Heart, the Will to Make It So’ cannot be fulfilled.
In the 2004 Council Resolution on Disabilities, the following recommendations were made to the WVI
Board of Directors:
Disability Awareness Network will be asked to develop disability awareness as a new cross-cutting
issue for World Vision’s relief, development and advocacy work in the same way that gender,
Christian impact, and gender and development are current cross-cutting issues today. Toward that
end the following work would be completed:
1. Develop a disability awareness toolkit and training materials
2. Integrate disability awareness into LEAP and existing policies, where needed
3. Working together with the Children in Ministry, increase the proportion of sponsored children
who have disabilities
4. Create partnership with specialist organisations worldwide to collaborate with and support
World Vision with rehabilitation, disability aids and other services
This position paper presents an understanding and views on disability that are different from
traditional ones and if adopted will be used to support the mainstreaming of disability in World
Vision’s work. The paper will be shared with members of Disability Awareness Network, TD
Community, Children in Ministry, Humanitarian & Emergency Affairs, and Advocacy for their
feedback. We hope to have a unified understanding of disability consolidated for the organisation
before the end of FY2006.
Introduction
In 2004 World Vision Triennial Council Resolution recognised disability as a cross-cutting issue and
recommended that we ‘integrate disability awareness into LEAP and existing policies’. World Vision
has been supporting children in especially difficult circumstances including disabled children for a
long time. Then why has the WVI Board of Directors recommended taking action on disability now?
Supporting disabled children and adults has been regarded by many World Vision offices as additional
and extra work: ‘We will help them if we can find a donor for a special project or if we have extra
funds’, as if we have an option. Disabled people have not consistently been participants and
beneficiaries of World Vision’s regular programmes and projects in the same way that non-disabled
2
people have. This may be so because disabled people are often considered as an issue or category
that comes under medicine/health, rather than simply as people who should benefit from and
participate in all World Vision programme areas. However, awareness on disability issues and on the
need for mainstreaming has been strongly supported by WORLD VISION UK and this issue has been
receiving more attention across the Partnership in recent years. There are more and more World
Vision colleagues who see the need to mainstream disability issues in World Vision policies and
include disabled people into our programmes/projects. But do we have a clear, unified
understanding on what we mean by ‘disability’? Is it about people who have impairments? Is it about
impairments or a health condition? Or is it ‘functional limitation’ caused by impairment or
discrimination? Is it about maltreatment and injustices faced by people who have impairments?
What are the issues World Vision needs to tackle in our work as a Christian, humanitarian and
development agency? Unless World Vision as an organisation has the same, clear understanding on
what disability is and what the challenges are, World Vision will not be able to fulfill the
recommendations of the 2004 Council Resolution and achieve inclusion of all children in our work.
Consultations with World Vision colleagues
Towards the end of 2005 World Vision Transformational Development (TD) Disability Working Group
(DWG) recognised the need for World Vision to have a unified understanding on what disability is and
an approach that is suitable to support disabled people in our work of transformational development.
Recognising that to support disabled people with provision of therapies, assistive devices or special
education is not enough for the mainstreaming and inclusion of disabled people or to challenge
inequality and injustices disabled people face in their everyday life and in society, the social model
of disability was introduced within World Vision. We hope that this understanding on disability issues
helped us recognise that disabled people are faced not only with their physiological impairments but
also social exclusion, discrimination and abuse. We also hope that this will help us see the need for
mainstreaming disability in policies and strategies, and including disabled people in our regular
programmes and projects. In working with disabled people many of us have become aware that
some people do not have actual impairments or have impairments but not ‘functional limitation’,
yet they are still excluded from the societies in which they live. Our target becomes clearer when
we separate impairments that people have, from the exclusion and discrimination that are placed
upon people who have impairments. With this recognition, definitions and models of disability as you
will see below were introduced to World Vision colleagues earlier this year:
Proposed definitions:
Impairments are problems in body function or structure.
Examples would include lacking part of or all of a limb; having a limb/organ/mechanism of the body
that does not fully function effectively and/or efficiently. Impairments include physical, sensory,
neurological, intellectual, mental, or any physiological long or short term impairment.
Disability is a ‘result of the limitations imposed’1
on people with impairments by attitudinal,
institutional, and environmental barriers to their participation in society.
‘What is not normal is being discriminated against and socially excluded because of having an
1 DFID KaR Lessons from the Disability Knowledge and Research Programme.
www.disabilitykar.net
3
impairment. This is what is disabling’2
. Disability can be seen in three different dimensions:
attitudinal, institutional and environmental (see the Box 1 below).
The three models on disability which will help us to see how disabled people are regarded:
The Medical model of disability is the traditional understanding of disability: What is wrong with
someone.3
It focuses on the impairment itself and sees it as an obstacle preventing people from fully
participating in society. Therefore the focus is to cure or improve individuals with impairments in
order to include or fit them into society.
This model is not about providing or not providing medical support/intervention. Neither does the
model suggest whether providing medical support is good or bad. The model is about how society or
non-disabled people in general see there is something wrong with disabled people and therefore
disabled people need to be ‘fixed’ (often medically) before they can be ‘integrated’ in society. As
such the model challenges the traditional approach to disability issues that expects barriers and
obstacles disabled people face to be solved if medical intervention/support were provided and
disabled people were cured or their health improved. (What happens then to those people whose
physiological condition cannot be improved or cured?) The very view that disabled people are
abnormal, damaged or patients is what is disabling to people with impairments.
The Charity model of disability regards people with impairment as unfortunate, tragic or helpless
people who deserve pity and charity. Therefore the typical approach would be to provide them with
money or gifts, such as food or clothing.
As with the medical model, the charity model of disability is not about providing or not providing
charity to disabled people. It confronts however the views and attitudes towards disabled people as
they have been considered helpless and to be pitied because they are considered unfit to work, of
less valuable as human beings, or simply because they have an impairment. Therefore the idea with
this model is to provide charity as if it is the only solution to help disabled people.
The Social model of disability focuses on society. It sees disability as ‘the social consequences of
having an impairment’.4
It recognises the inability of a society to accept and accommodate all of its
members. With this model or view, people are disabled by the society when they are deprived of
rights and opportunities due to their impairment.
The illustration5
below is helpful to understand the medical model or view on disability. See
Exclusion/Segregation and Integration in particular:
2 DFID KaR Lessons from the Disability Knowledge and Research Programme.
www.disabilitykar.net
3 DFID KaR. Lessons from the Disability Knowledge and Research Programme.
www.disabilitykar.net
4 DisabilityAwareness inAction. Social Model or Unsociable Muddle?
http://www.daa.org.uk/social_model.html
5 Modified from: World Vision Education Taskforce (November 2002) Inclusive Education
4
5
EXCLUSION/SEGREGATION OF DISABLED PEOPLE
Disabled adults and children are
segregated / excluded
‘Normal’ or mainstream society
Disabled adults/children are special.
Square pegs for square holes.
Disabled people/children need special
teachers or schools, therapists or doctors
‘Normal’ adults and children.
Round pegs for round holes.
‘Normal’ teachers and ‘normal’
school
INTEGRATION
Rehabilitation
Medical Intervention
Special Education
Change disabled adults/children to fit the
society or system.
Make the square peg round.
Society or system stays the same.
Disabled adults/children must adapt
or fail.
INCLUSION
Inclusive Society / System
People are different. Different abilities, ethnic groups, size, age, background, gender.
Everyone is valued and accepted. Everyone participates.
Change the society / system to fit people.
(Box 1)
- Three types of social barriers -
(Parts excerpted from the WVUK Draft Disability Toolkit)
Attitudinal barriers are perhaps the most problematic and difficult to root out. Within traditional
belief systems, disabled people are often seen as cursed or having bad luck, or are not ‘normal’ or
worthy. Examples of such barriers may be seen when disabled children are not allowed to participate
in a mainstream school when the school does not accept them simply because they are ‘disabled’, or
because their parents do not see value in education for disabled children. Or disabled people may be
excluded from employment opportunity if an employer considers having a disabled employee is not
good for business, either it would be bad luck for business or it would keep customers away (perhaps
because of their appearance). Exclusion of disabled people may also be seen in simple use of
language as often it becomes ‘them’ and ‘us’. Also, there may be assumptions and certain
expectations of disabled people and how they should behave; e.g. unintelligent, violent, strange,
tragic, in need of care, weak, incapable, patient, non-sexual, obedient or submissive. An extreme
case of attitudinal barrier is infanticide where babies are killed simply because they are born with
impairments and are considered cursed or not worthy of living.
Institutional barriers can be described as systematic or legal barriers or discrimination to disabled
people; e.g. family, religion, education, health and other social services, legal system, employment,
political system, or even humanitarian and development agencies. In many countries the
marginalisation and exclusion of disabled people (for instance in terms of employment or political
representation) is similar to and compounded by the negative treatment of women and members of
ethnic minority groups. In the UK for example Afro-Caribbean men and women who have
impairment experience double disability at all levels.
For disabled people generally the effects of exclusion from institutions such as education and
training are cumulative. Segregated education makes fewer academic demands on pupils, much
smaller schools and classes expose them to a more limited range of cultural stimuli and experiences.
The virtual exclusion of disabled people from teacher training colleges also limits the numbers of
qualified disabled teachers who are available as role models for disabled and non-disabled pupils in
mainstream schools.
Environmental barriers can be seen in the following areas: public transport, housing, building,
roads, water points, leisure and recreation facilities, offices, factories, places of worship,
communications systems, or access to information. Once alerted, it is relatively easy to see the
environmental barriers that disabled people face: inaccessible offices, schools, markets, shops,
cinemas, toilets; inaccessible public transport; and poor signposting throughout. But it is probably
less easy to see how barriers in communications systems are disabling for a range of people,
particularly those who have hearing or visual impairments.
Take for instance HIV/AIDS education targeting school children. Those with hearing, visual or
intellectual impairments are unlikely to be able to access the information provided in class or in
print. Moreover, as UNESCO reports, since 98% of disabled children in developing countries do not
attend school6
, they are likely to miss out the important education/information. The high incidence
of disabled children not in school relates to low literacy rate amongst them (according to Einar
Helander, it is as low as 3% globally and as low as 1% for disabled women) which makes
6 Source from UNESCO
6
communication of messages about HIV/AIDS all the more difficult.7
And because many special
schools are not under ministry of education, their educational curriculum is different from that of
mainstream school. Hence the chances of children who attend special schools to miss the
information again are high. Further, although many international development organisations
including World Vision support HIV/AIDS education in mainstream schools, it is most often not
included in projects to support special education schools or institutions for disabled children. As a
study in Uganda found 38% of women and 35% of men with impairments had an STD (sexually
transmitted disease) at one time8
, the result of communication or information barriers disabled
children/people face is devastating.
Three models of disability (World Vision UK)
MEDICAL MODEL OF DISABILITY
CHARITY MODEL OF DISABILITY
SOCIETY
Disabled
people
Activities by society “fix”
disabled person, who is
“sick”, so they can join
“normal” society
SOCIETY
SOCIAL MODEL OF DISABILITY
Disabled
people
SOCIETY
Disabled
people
Disabled people are part of society and should
be included in all activities. Society needs to
change. Activities focus on inclusion and the
elimination of barriers preventing the
effective participation in society of disabled
people:
Attitude – prejudice, stigma
Institutional - policies
Environmental – eg access to buildings
Activities by society “help”
disabled person, who is
“helpless”
7 Source from Disability Fact Sheet by CRIN
8 World Bank / Yale University (April 2004) HIV/AIDS & Disability: Capturing Hidden Voices
7
Mainstreaming Disability Issues and Inclusion of Disabled People:
As the experience of the Women in Development (WID) teaches us, mere inclusion and recognition of
disabled people’s value are not enough. For disabled people to be included in our regular
programmes and projects, capacity building and empowering of disabled people alone are not
enough. As with the social model of disability, society and non-disabled people must also be targeted
by our work so that mainstreaming of disability issues will be addressed and disabled people will be
included in our programmes and projects on equal terms with non-disabled people. Just as women’s
voices and experiences need to be included in any decision-making, policy or strategy, disability
equality will not be achieved without the participation of disabled people.
Goal of Disability Mainstreaming:
To have disabled adults and children included in all our programmes and projects as equal
participants and beneficiaries just as non-disabled adults and children are.
Definition of Disability Mainstreaming
Mainstreaming is a ‘strategy for making disabled people’s concerns and experiences an integral
dimension of the design, implementation, monitoring and evaluation of policies and programmes in
all political, economic, and societal spheres so that disabled people benefit equally and inequality is
not perpetuated’ (modified from the ECOSOC’s gender mainstreaming definition)9
.
In 1989 World Vision International’s Triennial Council formed a Women’s Commission to draft a policy
on women in development and leadership. Since then World Vision has formed Gender Network and
developed a number of resources to mainstream gender in World Vision’s programmes and projects.
Because Disability and Gender share many and fundamental issues, it is proposed that World Vision’s
Gender Mainstreaming paradigm be used for Disability Mainstreaming. By having the same or similar
definitions, tools and paradigms it is also hoped that programme staff are more easily able to
mainstream different cross-cutting themes. The understanding of Disability Mainstreaming below
was developed from the definitions of World Vision’s Gender Mainstreaming:
Mainstreaming includes disability-specific activities and affirmative action, whenever disabled
people or non-disabled people are in a particularly disadvantageous position. Disability-specific
interventions can target disabled people exclusively, non-disabled and disabled people together, or
only non-disabled people, to enable them to participate in and benefit equally from development
efforts. These are necessary temporary measures designed to combat the direct and indirect
consequences of past discrimination.
Mainstreaming is not about adding a ‘disabled people or disability component’ or even a ‘disability
equality component’ into an existing activity. It goes beyond increasing disabled people’s
participation; it means bringing the experience, knowledge, and interests of disabled people and
non-disabled people to bear on the development agenda.
It may entail identifying the need for changes in that agenda. It may require changes in goals,
9 ECOSOC, 1997 cited in Carol Miller and BillAlbert, March 2005 Mainstreaming disability in
development: lessons from gender mainstreaming
8
strategies, and actions so that both disabled people and non-disabled people can influence,
participate in, and benefit from development processes. Mainstreaming disability is about the
transformation of unequal social and institutional structures into equal and just structures for both
disabled people and non-disabled people.
INCLUSION - Best Compliments
To be a part
and not stand apart
To belong
and not to be isolated
To have friends
and not just companions
To feel needed
and not just a person with needs
To be participant
and not a spectator
To have responsibilities
and not just enjoy rights
To have opportunities
and not favours
Is to be really ‘Included’
- Courtesy of Dipti Bhatia, Vidya Sagar -
9
DISABILITY DEFINITIONS AND MODELS
Proposed POSITION PAPER
Frequently Asked Questions
A number of responses were made in regards to the definitions and the three models of disability
proposed to World Vision early 2006. While most of them were supportive, there were some that did
not recognise the significance of social barriers disabled people face, and some seemed to have
confused the medical model of disability with medical intervention. It is hoped that the following
Q&A will bring clarity and deeper understanding on what disability is and how different models view
disability issues or disabled people.
Q: Why do we need to define disability?
A: There are a number of definitions and understanding on what disability is. By having a unified
understanding and separating two different issues (health/impairment and discrimination/exclusion
in society), World Vision will be able to refocus and be more effective in including disabled people in
its programmes and projects.
Q: Does the social model of disability deny medical intervention?
A: No, it does not deny the need for medical intervention or support for some people with
impairment. The social model is a deliberate attempt to shift our focus away from the health, body
and ability or inability of individuals and to move towards a focus on the barriers and discriminations
that exist in the society. This is because so much attention has been focused on individuals’
impairments/body but not on the inequality of human rights and opportunities. As European Forum
of Disability clearly points out, ‘Preventing impairments through vaccinations, eliminating diseases
that cause impairment and improving birth practices does nothing to improve the human rights of
disabled persons already living’.10
Q: Why is the social model of disability relevant to World Vision’s work?
A: In our effort to mainstream disability, it is essential that all possible barriers and difficult areas for
disabled people are recognised. Impairment or health conditions are areas that have been getting a
lot of attention and support. However barriers of social exclusion and discrimination disabled people
face have been largely overlooked in the past when almost all people with perceived impairments
experience such barriers.
The process of Transformational Development ‘helps people and their communities recognise the
resources that lie within themselves to make change possible’. While some disabled people need
support in medical intervention, all disabled people need to and have the right to participate in
society as non-disabled people do. All the areas that WV supports such as health care, agriculture
production, water and sanitation, education, micro-enterprise development, disaster mitigation and
relief and emergency relief are important to disabled people’s lives although these are also the
areas that they have been often excluded from. Including disabled people in these areas in the same
10 EDF 2002 EDF Policy Paper’Development cooperation and disability.
www.iddc.org.uk/dis_dev/mainstreaming/edf_policy.pdf
10
way non-disabled people are included will help ensure disabled people’s participation as equal
citizens of society. The social model of disability helps us explicitly recognise these barrier areas and
the need to support disabled people in these areas rather than focusing our work on medicine and
health.
Q: Is medical intervention/support different from the medical model of disability?
A: Absolutely Some people seem to be confused about the two and think they are the same. While
impairments and need for medical support for some people with impairments must be
acknowledged, the medical model is the view that holds disabled people accountable for the
discrimination and social exclusion they face. Under the social model, society is accountable for
these obstacles placed on disabled people.
Q: How about empowerment and capacity building of disabled people?
A: These are important in supporting disabled people, and the social model does not rule them out.
The model however emphasises the society’s disabling barriers and discriminations, as these have
been the most neglected areas. We can see the example from Women in Development (WID)
approach too. While empowering and providing medical support to some disabled people is
important in disabled people’s access to equal opportunities and rights, social barriers and
discrimination must be addressed and dealt with separately, which is the area that has been
neglected and ignored in past. In other words, much attention has been paid to individuals’
ability/inability and capacity, but not enough on the injustices and inequality that exist in our society.
And this is the very reason why impairments and ‘disability’ (as in social barriers) need to be
addressed separately.
Q: Why doesn’t World Vision use United Nation’s definition on disability?
The UN Enable refers definition of disability to those provided by the World Health Organisation11
:
Impairment is any loss or abnormality of psychological, physiological, or anatomical structure or
function. Impairments are disturbances at the level of the organ which include defects in or loss
of a limb, organ or other body structure, as well as defects in or loss of a mental function.
Disability is a restriction or lack (resulting from an impairment) of ability to perform an activity in
the manner or within the range considered normal for a human being. It describes a functional
limitation or activity restriction caused by an impairment. Disabilities are descriptions of
disturbances in function at the level of the person.
A handicap is a disadvantage for a given individual, resulting from an impairment or disability, that
limits or prevents the fulfillment of a role that is normal (depending on age, sex and social and
cultural factors) for that individual. The term is also a classification of circumstances in which
disabled people are likely to find themselves.
A: Because the above definitions focus on individuals with impairments and his/her surroundings,
they fail to capture other aspects of ‘disability’ which is the exclusion and discrimination that exist
in general society. The degree of function for many disabled people is restricted not only by their
impairment but also by the society and the social norm. Having to meet the standard or what is
‘normal’ restricts people with impairments and limits their function and capacity. If we are to
support inclusion of disabled people in community development work, and from experiences and
11 The United nations and Disabled Persons – The First Fifty Years:
http://www.un.org/esa/socdev/enable/dis50y10.htm
11
lessons of Gender and Development, we are reminded to focus our work not only on disabled people
but also on non-disabled people/society.
As such it is recommended that World Vision does not use definitions that are based on the individual,
medical model of disability but the ones that are recommended in the beginning of this position
paper.
Q: What about definitions proposed by WHO in its ICIDH12
and ICF13
? Why doesn’t World Vision
use them?
A: WHO offers definitions on Body Functions, Body Structures, Impairments, Activity, Participation,
Activity Limitations, Participation Restrictions, and Environmental Factors, and states the aims of
ICF as follows (WHO ICF Introduction14
, pp. 5):
To provide a scientific basis for understanding and studying health and health related states,
outcomes and determinants;
To establish a common language for describing health and health-related states…;
To permit comparison of data across countries, health care disciplines, services and time; and
To provide a systematic coding scheme for health information systems.
Because the WHO is a health organisation and as it is stated in itself, ICF is ‘inherently a health and
health-related classification’ (ICF Introduction, pp.5), the focus of WHO’s work and ICF is health. We
cannot expect health to cover other areas of people’s lives such as social issues. Because what World
Vision aims is mainstreaming disability into LEAP and inclusion of disabled people into all our
programmes/projects, a definition that is more suitable to our development and emergency relief
work should be used rather than the health-focused definition.
Q: But doesn’t ‘disability’ come under health?
A: We must remember to separate issues from people. We should also remember that body or
physiological health is not everything for a person as whole. Some aspects of us as human being
come under health, but many other aspects don’t.
In our conventional term, what does ‘disability’ mean? Are we talking about issues or people? If it is
about issues, are we talking about health issues or discrimination, social exclusion and abuse against
disabled people?
Impairments and impairment related issues (or disability in the sense of health) come under health
and medicine. We must remember to separate disability or impairment related issues from people
who have impairment. Disability ‘issue’ is recognised by WORLD VISION as a cross-cutting theme of
LEAP. It is a cross-cutting issue that comes under every sector of our work (agriculture, WATSAN,
MED/MFI, education, health, employment/VT, environment, child protection, disaster mitigation,
emergency and relief, etc.).
Q: Disabled people are partly or fully accountable for the barriers they encounter because of
12 ICIDH: International Classification of Impairments, Disabilities, and Handicap published by WHO
13 ICF: International Classification of Functioning. WHO revised ICIDH to ICF following much
criticism on ICIDH from disabled people, activists and organisations.
14 http://www3.who.int/icf/intros/ICF-Eng-Intro.pdf
12
their impairments, ‘abnormality’ or ‘deficiency’.
A: Some argue ‘If a person does not have impairment, the person will not encounter disability
related discrimination or exclusion’. No Doubt. But is there a point in such discussion? The fact is
that there are people with impairment and they are being discriminated against and excluded. The
challenge to discrimination and exclusion must be dealt with separately from individual impairment
or health condition.
What we have been discussing is about understanding that there are other perspectives out there
that are different from yours or mine. We are so used to living with only one notion of what is right
and wrong, or what is normal and not normal. I think we are confusing ‘normal’ with ‘majority’, and
majority does not necessarily mean ‘normal’. What is ‘normal’ in one culture does not mean it is
‘normal’ in another. In the end we are talking about inclusion and accepting differences.
Q: How about prevention of impairment?
A: World Vision has many colleagues who have health and medical backgrounds. There are other
agencies that World Vision can work with such as national and local level government agencies, local
and international non-governmental organisations, and UN bodies. Their expertise is fundamental to
our programming in prevention of impairment. However we must remember that this should come
under our health programme/projects.
Some of the feedback that supports the definitions and social model of disability (direct quotes):
Social inclusion component is crucial to improve the quality of life of disabled people.
The models are neither explanation of events nor are they prescriptions for actions. They are
merely tools for gaining insight into an existing problem so that the future of the disabled may
be changed.
The social model of disability can provide a more adequate basis for all kinds of professional
involvement including that of medical intervention.
The real problem is in society, which is not prepared to ‘deal’ or accept disabled people as full
citizens with all rights.
The most constructive way of helping people with disabilities is by changing attitudes in society.
The insights and sharings are very useful to set my mind on this issue and the kind of indicators
that we should explore in order to get a better idea of the social barriers that limit the full
participation of the vulnerable in the community or society’s development.
With our understanding on the Social Model of Disability, what does our work for disabled
children look like?
Let’s see an example of a child who uses wheelchair facing barriers in receiving mainstream school
education:
For a child to participate in school education, our traditional approach has been providing
rehabilitation or assistive devices. However a child who uses a wheelchair or crutches still may not
be able to participate in mainstream school education if there are barriers in the society. In the
illustration below15
, we see steps as physical or environmental barriers (barriers can also be a
method of communication for children with hearing or visual impairment for example) and
attitudinal barriers (teachers or classmates not accepting the child in the school, or parents of the
15 Illustrations from: Werner, D. 1988 NothingAbout Us Without Us.
13
child may not letting the child out of the house if education was regarded as unnecessary for
disabled children or because of stigma or myths). Though it is not in the illustration below, there is
also another form of barrier: institutional. This form of barrier often comes as a form of
discrimination (for example there is a visible or invisible legislation or school policy that does not
allow disabled children to participate in mainstream school education.)
14
+ Legislation/Policy change
15

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Disability Definitions and Models - WVI DWG Position Paper

  • 1. DISABILITY DEFINITION, MODELS, and MAINSTREAMING POSITION PAPER Courtesy of WHO World Vision International Disability Working Group Updated: May 2007 1
  • 2. DISABILITY DEFINITIONS, MODELS AND MAINSTREAMING POSITION PAPER This position paper aims to bring World Vision colleagues an understanding on disability issues in order to prepare the organisation towards mainstreaming and inclusion of disabled children and adults. Without the inclusion of disabled children and adults in our work, ‘Our Vision for Every Child, Life in All Its fullness, Our prayer for Every Heart, the Will to Make It So’ cannot be fulfilled. In the 2004 Council Resolution on Disabilities, the following recommendations were made to the WVI Board of Directors: Disability Awareness Network will be asked to develop disability awareness as a new cross-cutting issue for World Vision’s relief, development and advocacy work in the same way that gender, Christian impact, and gender and development are current cross-cutting issues today. Toward that end the following work would be completed: 1. Develop a disability awareness toolkit and training materials 2. Integrate disability awareness into LEAP and existing policies, where needed 3. Working together with the Children in Ministry, increase the proportion of sponsored children who have disabilities 4. Create partnership with specialist organisations worldwide to collaborate with and support World Vision with rehabilitation, disability aids and other services This position paper presents an understanding and views on disability that are different from traditional ones and if adopted will be used to support the mainstreaming of disability in World Vision’s work. The paper will be shared with members of Disability Awareness Network, TD Community, Children in Ministry, Humanitarian & Emergency Affairs, and Advocacy for their feedback. We hope to have a unified understanding of disability consolidated for the organisation before the end of FY2006. Introduction In 2004 World Vision Triennial Council Resolution recognised disability as a cross-cutting issue and recommended that we ‘integrate disability awareness into LEAP and existing policies’. World Vision has been supporting children in especially difficult circumstances including disabled children for a long time. Then why has the WVI Board of Directors recommended taking action on disability now? Supporting disabled children and adults has been regarded by many World Vision offices as additional and extra work: ‘We will help them if we can find a donor for a special project or if we have extra funds’, as if we have an option. Disabled people have not consistently been participants and beneficiaries of World Vision’s regular programmes and projects in the same way that non-disabled 2
  • 3. people have. This may be so because disabled people are often considered as an issue or category that comes under medicine/health, rather than simply as people who should benefit from and participate in all World Vision programme areas. However, awareness on disability issues and on the need for mainstreaming has been strongly supported by WORLD VISION UK and this issue has been receiving more attention across the Partnership in recent years. There are more and more World Vision colleagues who see the need to mainstream disability issues in World Vision policies and include disabled people into our programmes/projects. But do we have a clear, unified understanding on what we mean by ‘disability’? Is it about people who have impairments? Is it about impairments or a health condition? Or is it ‘functional limitation’ caused by impairment or discrimination? Is it about maltreatment and injustices faced by people who have impairments? What are the issues World Vision needs to tackle in our work as a Christian, humanitarian and development agency? Unless World Vision as an organisation has the same, clear understanding on what disability is and what the challenges are, World Vision will not be able to fulfill the recommendations of the 2004 Council Resolution and achieve inclusion of all children in our work. Consultations with World Vision colleagues Towards the end of 2005 World Vision Transformational Development (TD) Disability Working Group (DWG) recognised the need for World Vision to have a unified understanding on what disability is and an approach that is suitable to support disabled people in our work of transformational development. Recognising that to support disabled people with provision of therapies, assistive devices or special education is not enough for the mainstreaming and inclusion of disabled people or to challenge inequality and injustices disabled people face in their everyday life and in society, the social model of disability was introduced within World Vision. We hope that this understanding on disability issues helped us recognise that disabled people are faced not only with their physiological impairments but also social exclusion, discrimination and abuse. We also hope that this will help us see the need for mainstreaming disability in policies and strategies, and including disabled people in our regular programmes and projects. In working with disabled people many of us have become aware that some people do not have actual impairments or have impairments but not ‘functional limitation’, yet they are still excluded from the societies in which they live. Our target becomes clearer when we separate impairments that people have, from the exclusion and discrimination that are placed upon people who have impairments. With this recognition, definitions and models of disability as you will see below were introduced to World Vision colleagues earlier this year: Proposed definitions: Impairments are problems in body function or structure. Examples would include lacking part of or all of a limb; having a limb/organ/mechanism of the body that does not fully function effectively and/or efficiently. Impairments include physical, sensory, neurological, intellectual, mental, or any physiological long or short term impairment. Disability is a ‘result of the limitations imposed’1 on people with impairments by attitudinal, institutional, and environmental barriers to their participation in society. ‘What is not normal is being discriminated against and socially excluded because of having an 1 DFID KaR Lessons from the Disability Knowledge and Research Programme. www.disabilitykar.net 3
  • 4. impairment. This is what is disabling’2 . Disability can be seen in three different dimensions: attitudinal, institutional and environmental (see the Box 1 below). The three models on disability which will help us to see how disabled people are regarded: The Medical model of disability is the traditional understanding of disability: What is wrong with someone.3 It focuses on the impairment itself and sees it as an obstacle preventing people from fully participating in society. Therefore the focus is to cure or improve individuals with impairments in order to include or fit them into society. This model is not about providing or not providing medical support/intervention. Neither does the model suggest whether providing medical support is good or bad. The model is about how society or non-disabled people in general see there is something wrong with disabled people and therefore disabled people need to be ‘fixed’ (often medically) before they can be ‘integrated’ in society. As such the model challenges the traditional approach to disability issues that expects barriers and obstacles disabled people face to be solved if medical intervention/support were provided and disabled people were cured or their health improved. (What happens then to those people whose physiological condition cannot be improved or cured?) The very view that disabled people are abnormal, damaged or patients is what is disabling to people with impairments. The Charity model of disability regards people with impairment as unfortunate, tragic or helpless people who deserve pity and charity. Therefore the typical approach would be to provide them with money or gifts, such as food or clothing. As with the medical model, the charity model of disability is not about providing or not providing charity to disabled people. It confronts however the views and attitudes towards disabled people as they have been considered helpless and to be pitied because they are considered unfit to work, of less valuable as human beings, or simply because they have an impairment. Therefore the idea with this model is to provide charity as if it is the only solution to help disabled people. The Social model of disability focuses on society. It sees disability as ‘the social consequences of having an impairment’.4 It recognises the inability of a society to accept and accommodate all of its members. With this model or view, people are disabled by the society when they are deprived of rights and opportunities due to their impairment. The illustration5 below is helpful to understand the medical model or view on disability. See Exclusion/Segregation and Integration in particular: 2 DFID KaR Lessons from the Disability Knowledge and Research Programme. www.disabilitykar.net 3 DFID KaR. Lessons from the Disability Knowledge and Research Programme. www.disabilitykar.net 4 DisabilityAwareness inAction. Social Model or Unsociable Muddle? http://www.daa.org.uk/social_model.html 5 Modified from: World Vision Education Taskforce (November 2002) Inclusive Education 4
  • 5. 5 EXCLUSION/SEGREGATION OF DISABLED PEOPLE Disabled adults and children are segregated / excluded ‘Normal’ or mainstream society Disabled adults/children are special. Square pegs for square holes. Disabled people/children need special teachers or schools, therapists or doctors ‘Normal’ adults and children. Round pegs for round holes. ‘Normal’ teachers and ‘normal’ school INTEGRATION Rehabilitation Medical Intervention Special Education Change disabled adults/children to fit the society or system. Make the square peg round. Society or system stays the same. Disabled adults/children must adapt or fail. INCLUSION Inclusive Society / System People are different. Different abilities, ethnic groups, size, age, background, gender. Everyone is valued and accepted. Everyone participates. Change the society / system to fit people.
  • 6. (Box 1) - Three types of social barriers - (Parts excerpted from the WVUK Draft Disability Toolkit) Attitudinal barriers are perhaps the most problematic and difficult to root out. Within traditional belief systems, disabled people are often seen as cursed or having bad luck, or are not ‘normal’ or worthy. Examples of such barriers may be seen when disabled children are not allowed to participate in a mainstream school when the school does not accept them simply because they are ‘disabled’, or because their parents do not see value in education for disabled children. Or disabled people may be excluded from employment opportunity if an employer considers having a disabled employee is not good for business, either it would be bad luck for business or it would keep customers away (perhaps because of their appearance). Exclusion of disabled people may also be seen in simple use of language as often it becomes ‘them’ and ‘us’. Also, there may be assumptions and certain expectations of disabled people and how they should behave; e.g. unintelligent, violent, strange, tragic, in need of care, weak, incapable, patient, non-sexual, obedient or submissive. An extreme case of attitudinal barrier is infanticide where babies are killed simply because they are born with impairments and are considered cursed or not worthy of living. Institutional barriers can be described as systematic or legal barriers or discrimination to disabled people; e.g. family, religion, education, health and other social services, legal system, employment, political system, or even humanitarian and development agencies. In many countries the marginalisation and exclusion of disabled people (for instance in terms of employment or political representation) is similar to and compounded by the negative treatment of women and members of ethnic minority groups. In the UK for example Afro-Caribbean men and women who have impairment experience double disability at all levels. For disabled people generally the effects of exclusion from institutions such as education and training are cumulative. Segregated education makes fewer academic demands on pupils, much smaller schools and classes expose them to a more limited range of cultural stimuli and experiences. The virtual exclusion of disabled people from teacher training colleges also limits the numbers of qualified disabled teachers who are available as role models for disabled and non-disabled pupils in mainstream schools. Environmental barriers can be seen in the following areas: public transport, housing, building, roads, water points, leisure and recreation facilities, offices, factories, places of worship, communications systems, or access to information. Once alerted, it is relatively easy to see the environmental barriers that disabled people face: inaccessible offices, schools, markets, shops, cinemas, toilets; inaccessible public transport; and poor signposting throughout. But it is probably less easy to see how barriers in communications systems are disabling for a range of people, particularly those who have hearing or visual impairments. Take for instance HIV/AIDS education targeting school children. Those with hearing, visual or intellectual impairments are unlikely to be able to access the information provided in class or in print. Moreover, as UNESCO reports, since 98% of disabled children in developing countries do not attend school6 , they are likely to miss out the important education/information. The high incidence of disabled children not in school relates to low literacy rate amongst them (according to Einar Helander, it is as low as 3% globally and as low as 1% for disabled women) which makes 6 Source from UNESCO 6
  • 7. communication of messages about HIV/AIDS all the more difficult.7 And because many special schools are not under ministry of education, their educational curriculum is different from that of mainstream school. Hence the chances of children who attend special schools to miss the information again are high. Further, although many international development organisations including World Vision support HIV/AIDS education in mainstream schools, it is most often not included in projects to support special education schools or institutions for disabled children. As a study in Uganda found 38% of women and 35% of men with impairments had an STD (sexually transmitted disease) at one time8 , the result of communication or information barriers disabled children/people face is devastating. Three models of disability (World Vision UK) MEDICAL MODEL OF DISABILITY CHARITY MODEL OF DISABILITY SOCIETY Disabled people Activities by society “fix” disabled person, who is “sick”, so they can join “normal” society SOCIETY SOCIAL MODEL OF DISABILITY Disabled people SOCIETY Disabled people Disabled people are part of society and should be included in all activities. Society needs to change. Activities focus on inclusion and the elimination of barriers preventing the effective participation in society of disabled people: Attitude – prejudice, stigma Institutional - policies Environmental – eg access to buildings Activities by society “help” disabled person, who is “helpless” 7 Source from Disability Fact Sheet by CRIN 8 World Bank / Yale University (April 2004) HIV/AIDS & Disability: Capturing Hidden Voices 7
  • 8. Mainstreaming Disability Issues and Inclusion of Disabled People: As the experience of the Women in Development (WID) teaches us, mere inclusion and recognition of disabled people’s value are not enough. For disabled people to be included in our regular programmes and projects, capacity building and empowering of disabled people alone are not enough. As with the social model of disability, society and non-disabled people must also be targeted by our work so that mainstreaming of disability issues will be addressed and disabled people will be included in our programmes and projects on equal terms with non-disabled people. Just as women’s voices and experiences need to be included in any decision-making, policy or strategy, disability equality will not be achieved without the participation of disabled people. Goal of Disability Mainstreaming: To have disabled adults and children included in all our programmes and projects as equal participants and beneficiaries just as non-disabled adults and children are. Definition of Disability Mainstreaming Mainstreaming is a ‘strategy for making disabled people’s concerns and experiences an integral dimension of the design, implementation, monitoring and evaluation of policies and programmes in all political, economic, and societal spheres so that disabled people benefit equally and inequality is not perpetuated’ (modified from the ECOSOC’s gender mainstreaming definition)9 . In 1989 World Vision International’s Triennial Council formed a Women’s Commission to draft a policy on women in development and leadership. Since then World Vision has formed Gender Network and developed a number of resources to mainstream gender in World Vision’s programmes and projects. Because Disability and Gender share many and fundamental issues, it is proposed that World Vision’s Gender Mainstreaming paradigm be used for Disability Mainstreaming. By having the same or similar definitions, tools and paradigms it is also hoped that programme staff are more easily able to mainstream different cross-cutting themes. The understanding of Disability Mainstreaming below was developed from the definitions of World Vision’s Gender Mainstreaming: Mainstreaming includes disability-specific activities and affirmative action, whenever disabled people or non-disabled people are in a particularly disadvantageous position. Disability-specific interventions can target disabled people exclusively, non-disabled and disabled people together, or only non-disabled people, to enable them to participate in and benefit equally from development efforts. These are necessary temporary measures designed to combat the direct and indirect consequences of past discrimination. Mainstreaming is not about adding a ‘disabled people or disability component’ or even a ‘disability equality component’ into an existing activity. It goes beyond increasing disabled people’s participation; it means bringing the experience, knowledge, and interests of disabled people and non-disabled people to bear on the development agenda. It may entail identifying the need for changes in that agenda. It may require changes in goals, 9 ECOSOC, 1997 cited in Carol Miller and BillAlbert, March 2005 Mainstreaming disability in development: lessons from gender mainstreaming 8
  • 9. strategies, and actions so that both disabled people and non-disabled people can influence, participate in, and benefit from development processes. Mainstreaming disability is about the transformation of unequal social and institutional structures into equal and just structures for both disabled people and non-disabled people. INCLUSION - Best Compliments To be a part and not stand apart To belong and not to be isolated To have friends and not just companions To feel needed and not just a person with needs To be participant and not a spectator To have responsibilities and not just enjoy rights To have opportunities and not favours Is to be really ‘Included’ - Courtesy of Dipti Bhatia, Vidya Sagar - 9
  • 10. DISABILITY DEFINITIONS AND MODELS Proposed POSITION PAPER Frequently Asked Questions A number of responses were made in regards to the definitions and the three models of disability proposed to World Vision early 2006. While most of them were supportive, there were some that did not recognise the significance of social barriers disabled people face, and some seemed to have confused the medical model of disability with medical intervention. It is hoped that the following Q&A will bring clarity and deeper understanding on what disability is and how different models view disability issues or disabled people. Q: Why do we need to define disability? A: There are a number of definitions and understanding on what disability is. By having a unified understanding and separating two different issues (health/impairment and discrimination/exclusion in society), World Vision will be able to refocus and be more effective in including disabled people in its programmes and projects. Q: Does the social model of disability deny medical intervention? A: No, it does not deny the need for medical intervention or support for some people with impairment. The social model is a deliberate attempt to shift our focus away from the health, body and ability or inability of individuals and to move towards a focus on the barriers and discriminations that exist in the society. This is because so much attention has been focused on individuals’ impairments/body but not on the inequality of human rights and opportunities. As European Forum of Disability clearly points out, ‘Preventing impairments through vaccinations, eliminating diseases that cause impairment and improving birth practices does nothing to improve the human rights of disabled persons already living’.10 Q: Why is the social model of disability relevant to World Vision’s work? A: In our effort to mainstream disability, it is essential that all possible barriers and difficult areas for disabled people are recognised. Impairment or health conditions are areas that have been getting a lot of attention and support. However barriers of social exclusion and discrimination disabled people face have been largely overlooked in the past when almost all people with perceived impairments experience such barriers. The process of Transformational Development ‘helps people and their communities recognise the resources that lie within themselves to make change possible’. While some disabled people need support in medical intervention, all disabled people need to and have the right to participate in society as non-disabled people do. All the areas that WV supports such as health care, agriculture production, water and sanitation, education, micro-enterprise development, disaster mitigation and relief and emergency relief are important to disabled people’s lives although these are also the areas that they have been often excluded from. Including disabled people in these areas in the same 10 EDF 2002 EDF Policy Paper’Development cooperation and disability. www.iddc.org.uk/dis_dev/mainstreaming/edf_policy.pdf 10
  • 11. way non-disabled people are included will help ensure disabled people’s participation as equal citizens of society. The social model of disability helps us explicitly recognise these barrier areas and the need to support disabled people in these areas rather than focusing our work on medicine and health. Q: Is medical intervention/support different from the medical model of disability? A: Absolutely Some people seem to be confused about the two and think they are the same. While impairments and need for medical support for some people with impairments must be acknowledged, the medical model is the view that holds disabled people accountable for the discrimination and social exclusion they face. Under the social model, society is accountable for these obstacles placed on disabled people. Q: How about empowerment and capacity building of disabled people? A: These are important in supporting disabled people, and the social model does not rule them out. The model however emphasises the society’s disabling barriers and discriminations, as these have been the most neglected areas. We can see the example from Women in Development (WID) approach too. While empowering and providing medical support to some disabled people is important in disabled people’s access to equal opportunities and rights, social barriers and discrimination must be addressed and dealt with separately, which is the area that has been neglected and ignored in past. In other words, much attention has been paid to individuals’ ability/inability and capacity, but not enough on the injustices and inequality that exist in our society. And this is the very reason why impairments and ‘disability’ (as in social barriers) need to be addressed separately. Q: Why doesn’t World Vision use United Nation’s definition on disability? The UN Enable refers definition of disability to those provided by the World Health Organisation11 : Impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function. Impairments are disturbances at the level of the organ which include defects in or loss of a limb, organ or other body structure, as well as defects in or loss of a mental function. Disability is a restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. It describes a functional limitation or activity restriction caused by an impairment. Disabilities are descriptions of disturbances in function at the level of the person. A handicap is a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex and social and cultural factors) for that individual. The term is also a classification of circumstances in which disabled people are likely to find themselves. A: Because the above definitions focus on individuals with impairments and his/her surroundings, they fail to capture other aspects of ‘disability’ which is the exclusion and discrimination that exist in general society. The degree of function for many disabled people is restricted not only by their impairment but also by the society and the social norm. Having to meet the standard or what is ‘normal’ restricts people with impairments and limits their function and capacity. If we are to support inclusion of disabled people in community development work, and from experiences and 11 The United nations and Disabled Persons – The First Fifty Years: http://www.un.org/esa/socdev/enable/dis50y10.htm 11
  • 12. lessons of Gender and Development, we are reminded to focus our work not only on disabled people but also on non-disabled people/society. As such it is recommended that World Vision does not use definitions that are based on the individual, medical model of disability but the ones that are recommended in the beginning of this position paper. Q: What about definitions proposed by WHO in its ICIDH12 and ICF13 ? Why doesn’t World Vision use them? A: WHO offers definitions on Body Functions, Body Structures, Impairments, Activity, Participation, Activity Limitations, Participation Restrictions, and Environmental Factors, and states the aims of ICF as follows (WHO ICF Introduction14 , pp. 5): To provide a scientific basis for understanding and studying health and health related states, outcomes and determinants; To establish a common language for describing health and health-related states…; To permit comparison of data across countries, health care disciplines, services and time; and To provide a systematic coding scheme for health information systems. Because the WHO is a health organisation and as it is stated in itself, ICF is ‘inherently a health and health-related classification’ (ICF Introduction, pp.5), the focus of WHO’s work and ICF is health. We cannot expect health to cover other areas of people’s lives such as social issues. Because what World Vision aims is mainstreaming disability into LEAP and inclusion of disabled people into all our programmes/projects, a definition that is more suitable to our development and emergency relief work should be used rather than the health-focused definition. Q: But doesn’t ‘disability’ come under health? A: We must remember to separate issues from people. We should also remember that body or physiological health is not everything for a person as whole. Some aspects of us as human being come under health, but many other aspects don’t. In our conventional term, what does ‘disability’ mean? Are we talking about issues or people? If it is about issues, are we talking about health issues or discrimination, social exclusion and abuse against disabled people? Impairments and impairment related issues (or disability in the sense of health) come under health and medicine. We must remember to separate disability or impairment related issues from people who have impairment. Disability ‘issue’ is recognised by WORLD VISION as a cross-cutting theme of LEAP. It is a cross-cutting issue that comes under every sector of our work (agriculture, WATSAN, MED/MFI, education, health, employment/VT, environment, child protection, disaster mitigation, emergency and relief, etc.). Q: Disabled people are partly or fully accountable for the barriers they encounter because of 12 ICIDH: International Classification of Impairments, Disabilities, and Handicap published by WHO 13 ICF: International Classification of Functioning. WHO revised ICIDH to ICF following much criticism on ICIDH from disabled people, activists and organisations. 14 http://www3.who.int/icf/intros/ICF-Eng-Intro.pdf 12
  • 13. their impairments, ‘abnormality’ or ‘deficiency’. A: Some argue ‘If a person does not have impairment, the person will not encounter disability related discrimination or exclusion’. No Doubt. But is there a point in such discussion? The fact is that there are people with impairment and they are being discriminated against and excluded. The challenge to discrimination and exclusion must be dealt with separately from individual impairment or health condition. What we have been discussing is about understanding that there are other perspectives out there that are different from yours or mine. We are so used to living with only one notion of what is right and wrong, or what is normal and not normal. I think we are confusing ‘normal’ with ‘majority’, and majority does not necessarily mean ‘normal’. What is ‘normal’ in one culture does not mean it is ‘normal’ in another. In the end we are talking about inclusion and accepting differences. Q: How about prevention of impairment? A: World Vision has many colleagues who have health and medical backgrounds. There are other agencies that World Vision can work with such as national and local level government agencies, local and international non-governmental organisations, and UN bodies. Their expertise is fundamental to our programming in prevention of impairment. However we must remember that this should come under our health programme/projects. Some of the feedback that supports the definitions and social model of disability (direct quotes): Social inclusion component is crucial to improve the quality of life of disabled people. The models are neither explanation of events nor are they prescriptions for actions. They are merely tools for gaining insight into an existing problem so that the future of the disabled may be changed. The social model of disability can provide a more adequate basis for all kinds of professional involvement including that of medical intervention. The real problem is in society, which is not prepared to ‘deal’ or accept disabled people as full citizens with all rights. The most constructive way of helping people with disabilities is by changing attitudes in society. The insights and sharings are very useful to set my mind on this issue and the kind of indicators that we should explore in order to get a better idea of the social barriers that limit the full participation of the vulnerable in the community or society’s development. With our understanding on the Social Model of Disability, what does our work for disabled children look like? Let’s see an example of a child who uses wheelchair facing barriers in receiving mainstream school education: For a child to participate in school education, our traditional approach has been providing rehabilitation or assistive devices. However a child who uses a wheelchair or crutches still may not be able to participate in mainstream school education if there are barriers in the society. In the illustration below15 , we see steps as physical or environmental barriers (barriers can also be a method of communication for children with hearing or visual impairment for example) and attitudinal barriers (teachers or classmates not accepting the child in the school, or parents of the 15 Illustrations from: Werner, D. 1988 NothingAbout Us Without Us. 13
  • 14. child may not letting the child out of the house if education was regarded as unnecessary for disabled children or because of stigma or myths). Though it is not in the illustration below, there is also another form of barrier: institutional. This form of barrier often comes as a form of discrimination (for example there is a visible or invisible legislation or school policy that does not allow disabled children to participate in mainstream school education.) 14