CHAPTER 1
Disability and development: an overview of the issues
Defining disability
What is disability? Trying to define it is a complex and controversial matter. It is important to consider the preferences of disabled people themselves, and to bear in mind that acceptable terminology changes over time, and from one culture to another. Two key terms – 'impairment' and 'disability' – are often used synonymously. However, their meanings are different, and it is important to make a distinction between them. Impairment has been defined as 'lacking all or part of a limb; having a defective limb, organ or mechanism of the body'. Some disabled campaigners question the use of this term, because of its negative implications; they prefer the more neutral term 'condition'. A condition may or may not be perceived as an impairment and may or may not restrict one's ability to function.
In contrast, the term disability, as used by disabled people's organisations (DPOs), emphasises society's denial of the human rights of the person with the impairment. In the words of Disabled Peoples' International: 'Disability is the disadvantage or restriction of activity caused by contemporary social organisation, which takes little or no account of people who have impairments, and thus excludes them from the mainstream of social activities.'
The distinction between the two terms is neatly summarised in a discussion paper issued by the UK government's Department for International Development: 'Disabled people have long-term impairments that lead to social and economic disadvantages, denial of rights, and limited opportunities to play an equal part in the life of the community.'
Societies may differ in their treatment of disabled people or in the way in which discrimination is expressed, but in general the marginalisation of disabled people is international and irrespective of social class.
Three major types of discrimination have been identified: attitudinal, environmental, and institutional. Disabled people may be socially excluded by attitudes of fear and ignorance on the part of non-disabled people, who may use negative and pejorative language about them; or they may be excluded from society because of generally low expectations of what disabled people can achieve. Environmental discrimination occurs where public services, buildings, and transport are not designed with access for disabled citizens in mind. Institutional discrimination occurs where the law discriminates (explicitly or by omission) against the rights of disabled people, making them in some way second-class citizens – without the right to vote, to own land, to attend school, to marry and have children.
The prevalence of impairment
The United Nations Development Programme (UNDP) estimates that in 1990 one in 20 of the world's population had a moderate to severe impairment (either physical or mental); the proportions ranged from 4.5 per cent in 'developing' areas to 7.7 per cent in 'developed' countries. The World Health Organisation, surveying the whole range of impairments, from mild to severe, estimates that between 10 and 15 per cent of the population of 'developing' areas are affected, with higher levels in affluent countries. Detailed surveys indicate wide variations in the prevalence of impairments within and between countries, depending on a range of factors. For example, endemic river-blindness may affect many people within a particular area; in populations with large numbers of older people, conditions caused by the normal process of ageing are more prevalent; where armed conflict has included use of anti-personnel mines in rural areas, exceptionally high numbers of amputees may be found.
High mortality rates among children and young people with disabilities reduce the recorded incidence of impairment; yet, even if those who have died prematurely are excluded from the estimates, disabled people form a substantial minority of any population. If, in addition, we consider the families of disabled people, their carers, and others who are seriously affected by disability, then in some parts of the world the majority of the population may be affected by disability.
Disability, gender, and poverty
There exists a vicious cycle that links poverty and disability. Poverty frequently causes disability, or makes its effects worse, by virtue of factors such as malnutrition, inadequate housing, dangerous work in hazardous conditions, poor-quality medical treatment, and inadequate access to services. Disabled people are likely to face barriers to their inclusion in society, to educational opportunities, and to their access to health care and employment, which in turn will perpetuate their poverty. Families with a disabled member also face barriers and are likely to experience a greater degree of poverty than similar families without disabled members.
The need to care for a disabled family member makes demands upon other members and reduces the time available to them for economic activity or skills development. Disability has a disproportionate impact on males and females: in developing countries, most of the caring, as well as much of the production, is done by women, and girls are frequently withdrawn from school to look after a disabled brother or sister. Although in global terms 51 per cent of disabled people are women, disabled girls and women have even less access to education, health care, and employment than disabled boys and men have. Disabled women are doubly discriminated against: as women, and as people with impairments. They are often invisible to the providers of health care, and particularly reproductive-health care, yet they are also the frequent victims of sexual abuse.
Discrimination against disabled people is compounded if they belong to an ethnic minority or other marginalised group. But irrespective of their social class, or their religious or ethnic identity, disabled people around the world are likely to be poorer in terms of money, power, and rights, than non-disabled citizens of the same group.
Organisations for disabled people and organisations of disabled people
Throughout Eastern Europe, under the socialist system, State-funded associations based on types of impairment (blindness, paraplegia, etc.) catered for disabled people. They gave people access to orthopaedic equipment, State welfare benefits, and occupational therapy, but they resulted in the segregation of services for disabled people and did nothing at all to empower them to claim their rights. Once the socialist system collapsed, even welfare benefits were lost, with nothing to replace them.
In the absence of a strong civil society, there was no mechanism for disabled people to participate in and lobby for changes that would improve their conditions. On a fundamental level they were not represented in forums where they might have claimed their rights and expressed their needs, and as such they were disenfranchised from the State process. In Kosovo the problem was compounded by prevailing attitudes of rejection or shame, which meant that disabled people were either hidden away and left to die, or cosseted and over-protected, deprived of any opportunity to live independently. The net result was that disabled people were virtually invisible and lacked mobility, opportunity, and confidence. Disabled women experienced these problems even more keenly than disabled men.
None of these problems is unique to Kosovo, but in a highly politicised environment it is particularly difficult for disabled people to articulate their specific needs, as distinct from the needs of the whole community. Throughout the 1980s and 1990s, tensions grew between the Kosovo Albanians and the Belgrade government. This evolved into a full-blown conflict in 1998. The prevailing view in Kosovo was that the situation of disabled people would automatically improve if and when the political problems were resolved for the whole population. The needs of the minority were subjugated to those of the majority – but many of the problems that disabled people faced were not at all dependent on a resolution of the macro-political problems.
Well-meaning professionals and carers have for many years decided what opportunities and services are offered to disabled people. Organisations for various disability sub-groups have tried to complement State provision by running additional services, such as organisations for blind people, or deaf people, or those with limited mobility. Whether run by the State or by the voluntary sector, both these approaches have been based on addressing the special needs of disabled people, particularly those closely relating to their impairment.
In recent decades, disabled people have reviewed the progress made towards meeting their needs via this model of service provision, controlled and organised by nondisabled staff with little room for the inclusion of the end-users. Since the International Year of the Disabled Person, 1981, and the ensuing Decade of Disabled People (1982–1992), disabled people and their own organisations have played a critical role in speaking out in international forums about the specific needs of disabled people, and in developing a rights-based approach to disability. This approach assumes that disabled people have diverse needs, like those of non-disabled people, which should be met as part of the general provision for the whole population: education services should meet the needs of all students, whether disabled or not; health services should be open and accessible to all.
The global, cross-disability movement called Disabled Peoples' International (DPI), to which most national organisations belong, describes itself as 'the last civil rights movement'. Its motto is Nothing about us without us. This is a call to disabled people and their organisations for action, involvement, and commitment. It urges disabled people not to allow others to ignore or forget about them, but to consult and listen to them, and to take their needs and rights into account. It encourages disabled people to make their presence felt and their opinions known, and to be actively involved in making decisions about all the issues affecting them.
Three models of disability
A major contribution made by disabled people to an understanding of disability has been the description and development of 'the three models of disability'. These are frameworks which help to explain the ways in which society responds to disability and to review the appropriateness of its responses.
The medical model of disability
The medical model tends to view disabled people first and foremost as having physical problems to be cured. The disabled person is relegated to the passive role of patient, with medical personnel and care professionals making many decisions – even about issues unrelated to impairment, such as how the individual should dress or what he or she may eat. This model is problematic because of its excessive focus on the desirability of fixing the disabled person's impairment. The quest for a cure is often protracted, painful, and unnecessary; it means that the rest of life is put on hold while professionals strive to return the body to a more 'normal' level of functioning. Corrective surgery is used to extend and straighten limbs, callipers are applied, and people are encouraged to try to walk, rather than use wheeled mobility appliances; deaf people are taught to speak and lip-read. Health-care professionals may refuse to tell disabled patients and their families that there is no cure for their condition, in the mistaken belief that this will sustain hope that they one day might be 'normal'. But if it happens that the impairment cannot be fixed, the disabled person is regarded as being beyond hope: his or her life is seen as worthless. By this stage, such a negative assessment may well become internalised by the person concerned.
There are clear cases where relatively simple levels of medical intervention can reduce the impact of impairments substantively; examples would be a surgical operation to correct a cataract or a club foot. It is also the case that some disabled people have a medical condition which requires support and intervention. Preventive measures to reduce the incidence of impairment and to promote its early detection are also valuable means of reducing the level and impact of disability. Disabled people do not reject medical intervention, but they stress that the impact of disability on the individual is much greater than its medical implications, and that it is misleading to focus on the search for a cure, rather than helping individuals to manage their own lives.
The medical model perceives disability as a problem located in the disabled individual, and assumes that working on the individual can solve it (or not, as the case may be, in which case the person concerned might as well give up all hope of a full and satisfying life). The disabled person becomes defined solely in terms of his or her diagnosis, as a patient with medical needs and no longer as a person with a whole range of needs.
The religious, or charitable, model of disability
The religious, or charitable, model tends to view disabled people as victims of impairment and as the beneficiaries of charity, alms, and services – for which they should be grateful. Disabled people are viewed as tragic or suffering people, to be pitied and cared for. At the same time, disabled people may find that they have few choices, no means of accessing relevant advice, and no powers to decide how they could best be assisted. Services are designed for them and delivered to them, perhaps with the best of intentions, but with insufficient consultation. Carers may become unacceptably powerful, making decisions about what is best for those in their care. An extreme (though not uncommon) example of this is the enforced sterilisation, without consultation or consent, of disabled women.
It is not uncommon for disabled people to become dependent upon the source of help, and for the alms-givers to gain gratification and reward from the relationship. Charity is provided at the discretion of the giver, often on the basis of 'worthiness'. If the person providing charity or care decides that the disabled person is unworthy, bitter, or 'negative', help may be withdrawn on a whim. Disabled people are often caricatured as being tragic and passive, if they need high levels of support; as bitter, twisted, and aggressive, if they are beginning to question the status quo; and as courageous and inspirational if they have managed, against all the odds, to overcome the barriers that confront them.
Because disabled people are considered to be different from the norm, a range of different, or special, services to meet their needs has usually been provided for them: special transport; special buildings; special schools (where the courses are very often less challenging and academic than in mainstream schools, making it hard or impossible for disabled people to enter higher education and employment); special sports and recreational facilities; sheltered employment workshops. Extra resources are necessary in order to provide such special services, and in resource-poor economies the inability to provide adequate levels of service (in health care, education, production) for the whole population is frequently used as a justification for doing very little to provide special services for disabled people.
It cannot be claimed that either the medical or the religious/charitable approach has had much success in improving the lives of disabled people – as proved by the high levels of poverty, abuse, marginalisation, and discrimination that disabled people still face worldwide; yet for centuries these two models have determined disabled people's experience. Through what is known as the 'mirror effect', many disabled people (who, like others, see themselves reflected in the attitudes of the people around them) have come to believe that they are unable. In recent years the deliberate focus of the disability movement on abilities rather than inabilities has helped to develop a new understanding of disability. In order to create a society that includes disabled and non-disabled people equally, and thus achieves Disability Equality, we need a new way of perceiving and responding to disability.
