These are some of the questions which are asked of disabled people every day of our lives. And there are almost as many answers as there are questions because people define us differently. Health and social care professionals, educationalists, international agencies, development NGOs and academics all seem obsessed with who we are, what we are, how many of us there are and how ‘terrible’ our lives must be!
For disabled people the problem with most of the definitions of disability is that they were produced by non-disabled people for the purposes of producing statistics based on cost-effectiveness of service provision rather than an attempt to address the barriers to our inclusion and humanity. For many of us, fitting into a particular definition criteria determines whether we are able to:
- demonstrate discrimination in a court
of law or
- access educational opportunities,
- Employment or
-
social support
No other marginalised group of people in society is expected
to categorise themselves or be categorised by others to the same extent as
disabled people. For example women and people from black and ethnic communities
are discriminated against across the world, because of society’s prejudice
about their gender or their cultural background but neither group is expected
to prove their femininity or ethnicity. What we need to do is to work together
in our local communities, and at the national and international level to change
the way society thinks about and defines disabled people; that it is the way
society is constructed that disables us not our impairments. Disabled
people’s lives are made difficult by the de-humanising barriers to our
inclusion not because we have impairments. This definition is known as the
social model of disability. This Briefing paper attempts to address the
confusion around the various definitions and looks at: - The ways disabled
people are defined - whether a definition of disability is important and whose
definition should we use, - what you and your organisations can do to promote
and lobby for the use of a social model definition.
Some would say everything and for disabled people our lives and life chances are determined by how we are defined. How disabled people are defined is often used as a means of control but also how we define ourselves has an impact on where we place ourselves in the world. Whether we allow ourselves to be viewed as ‘other’, separate, ultimately of less value or whether we recognise the perpetrators of our injustice and inhumanity as being society and the structures society creates to exclude disabled people. So let’s look at the differences between the traditionally accepted definitions of disability, which have for so long have prevented disabled people from gaining their rights: the World Health Organisation’s definition, disability definitions in legislation, and disabled peoples’ own definitions.
Disabled people have been the subject of much research and debate within the health professions for many years now. The World Health Organisation has spent the last thirty years devising ways of defining us as a health problem. The International Classification of Impairment Disability and Handicap (ICIDH), first used in the early 1980s, was developed by non-disabled ‘experts’ and was a medically-based way of measuring who and what disabled people were. It was a way of compartmentalising disabled people on the basis of our impairments and what level of social and medical ‘burden’ we were on a country’s economy. The ICIDH was replaced in 2001 by the International Classification on Functioning Disability and Health (ICF) which, attempts to look at the impact of the environment, both physical and attitudinal, in disabling people living with impairments We have become a profitable business for healthcare professionals and researchers. However it is a business that picks over our lives and our experiences and fails to change anything for the better. Our involvement is as research subjects rather than experts on our lives. Many of the big disability charities are so obsessed with the money to be made out of researching disabled people out of existence, that they have chosen to ignore the dangerous consequences of their work. We have been reduced to nasty and expensive health conditions by a healthcare industry that is determined to alienate us from the rest of the human race. This process of de-humanising us has allowed for the rapid growth in the new biotechnologies. The new genetic sciences are sold to us as techniques to reduce our so-called ‘pain and suffering’ but, the reality is that it is more about killing off those members of society who are considered to be less than desirable - Genetics are the new Eugenics. The denial of the true nature of disability - that it is created by a society that devalues diversity, has allowed for grossly incorrect judgements made about the quality of disabled peoples’ lives which has only served to fuel the growing trend of restricting our rightful access to healthcare and even life itself.
As disabled people we continue to campaign for full and enforceable civil rights wherever we live in the world. We also know that the only way of achieving this goal is for those rights to be enshrined in law. And this is where our problem lies. Many of us now live in countries where there is some kind of law protecting, in principle, disabled people’s rights, but very few choose to define ‘who disabled people are’ in anything other than medicalised terms. So in other words disabled people are defined in law by all the things we are not able to do because we have impairments rather than addressing the way in which we are discriminated against by having little or no access to:
- Information and Advocacy
-
Education and Employment
- Systems of Justice
- Family life
-
Protection of our Right to Life
All of these fundamental rights are taken for granted by non-disabled people. For many of us the process of having to prove we have been discriminated against is more difficult than for other marginalised groups. As previously stated, disabled people are the only marginalised group who have to prove they are really ’disabled’ before they then have to jump through the next hoop of proving that being a disabled people is the reason they were discriminated against. Law-makers seem to be terrified to simplify the enforcement mechanism or indeed to shift the definition of disability away from ‘us’ being the problem to a more inclusive definition. The reason being the fear of ‘opening the floodgates’ and that everyone has the potential to be defined as disabled. SO WHAT! If an individual feels they are being treated badly because they have an impairment then they should have the right to seek legal redress. Maybe the real reason is that the non-disabled majority are frightened to admit that the numbers of disabled people around the world is far in excess of the suggested 600 million.
United Nations definitions Despite all the positive work done in the last twenty years, the UN also choose to favour a medical approach to defining disability. The final report at the end of the International Decade of Disabled Persons in 1992 discussed at great length the negative impact of the environment on disabled people but still referred to us as “… suffering from a permanent or prolonged functional disorders”. The Convention on the Rights of the Child is the only UN Convention that mentions disability specifically. All the other Conventions theoretically include disabled people in the term “and others”. Many disabled people feel that only mentioning disability implicitly is the reason why we continue to remain invisible to the non-disabled majority.
Before 1980 there was no international pan-impairment movement of disabled people although there were groups of disabled people who had got together to discuss their situation and to think about new ways of defining those common experiences. Good work was being done by disabled people at the international level but, until this point, it had often been focused on impairment-specific issues. Disabled people started to realise that the traditional focus on impairment, rehabilitation and ‘special’ services had been a fundamental cause of the segregation of disabled people - segregation in institutions and in inaccessible homes and communities. These disabled thinkers realised that disability was not about an individuals’ inability to participate in the world but that disability arose from the social barriers faced by people with impairments. They also realised that unless disabled individuals could lead a life of their own choosing, where our humanity is recognised and diversity celebrated then the necessary social changes would not happen. It was out of this realisation and discussions that disabled people came up with their own definition—a definition that incorporated all of these ideas and the Social Model of Disability was born. This was for the first time a definition that recognised us a people who had a common experience of exclusion, prejudice and injustice.
It is important to recognise the important role language has had in reinforcing society’s assumptions about groups of people. In the same way that women and people from different cultural backgrounds have identified the power of language in the promotion of racism and sexism, disabled people have become more sensitive to the way words perpetuate discriminatory behaviour and language. Because of this and the growing trend towards ‘person’ first’ language, there is now a confusion as to whether we are ‘disabled people’ or ‘people with disabilities’. Supporters of the latter term suggest that ’people with disabilities’ is the most translatable into other languages - this is not the case. ‘People with disabilities’ suggests that ’disabilities’ and impairment is the same thing, which is exactly what disabled people are trying to get society to move away from. People are, in fact, disabled by society's reaction to their impairment; this is why the term disabled people is more acceptable. The disabled peoples’ movement prefers to use the politically more powerful term, disabled people, in order to place the emphasis on how society oppresses people with a whole range of impairments.
There is still a battle to be fought. A battle to have a definition of disability that sits comfortably with disabled people themselves. The fight against society’s continued insistence on classifying us by our impairments goes on and we have seen some victories. We have seen the ICIDH replaced by the ICF although we now have to contend with WHO’s Disability Adjusted Life Years (DALYS) which once again measure the health status of a nation and defines disability as impairment and lack of functioning which is then measured against life expectancy with no recognition of the impact of discrimination, poverty, war or violence. We must be clear. Disability is NOT a health issue - it is a social created mechanism for keeping us out! It is the way society systematically denies us our very humanity - disability is a human rights issue. Society must recognise that the disablism (the discriminatory, oppressive and abusive behaviour arising from the belief that disabled people are inferior or less than human) experienced by people with impairments is as unacceptable as racism, sexism and homophobia. It is that Disablism that society should be concerned with, not trying to change those of us with impairments to fit in with what the non-disabled majority think is ’normal’. Perceptions about disabled people will not change without the input of disabled people. This change can only happen if we persuade our communities, our governments and the huge number of international agencies that our definition of disability - the Social Model of Disability - is used when developing policies that affect our lives. It is only then that we stand a chance of changing the way the world views us. UN Convention for Disabled People Internationally the work continues on the draft UN Convention on the protection and promotion of the rights and dignity of disabled persons. Some of the Working party members (during a meeting in January 2004) agreed that the term disability should be defined broadly and some thought that to include a definition may be too problematic and anyway, why should disabled people need to be defined when others aren’t. All members have agreed that if a definition is included it must reflect the social model definition of disability. This is very good news although we are a very long way from the Convention being ratified. Disabled people and our organisations must work together now to ensure that such an important international human rights instrument includes language which is about recognising our value and our humanity and has the necessary reporting and enforcement mechanism that will enable us to use it as a tool for creating social change at our local communities level right through to the international level. Something to remember….. We have a responsibility to the future generations of disabled people that firstly there is a future to look forward to, but also to ensure that we claim as our own, the political and social definition of disability. We must no longer allow others to decide, for us, who we are and what we have a right to be.
ICIDH/ICF - www.who.org
Disabled Peoples’ definitions - www.dpi.org
www.daa.org.uk
Legal definitions - www.daa.org.uk/resources
Go to the
top of the page
Search this site