© Independent Living Institute
Independent Living Institute,
Storforsplan 36, 10 tr
123 47 Farsta
Tel. 08-506 22 179
Integrated National Disability Strategy
Office of the President
CHAPTER ONE: SITUATION ANALYSIS
Prevalence of Disability in South Africa
There is a serious lack of reliable information on the nature and prevalence of disability in South Africa. This is because, in the past, disability issues were viewed chiefly within a health and welfare framework. This led naturally to a failure to integrate disability into mainstream government statistical processes.
Statistics are unreliable for the following reasons:
Some useful statistics are, however, available from the United Nations Development Programme (UNDP) and the Central Statistical Service (CSS).(Footnote 1) These provide some guidance to estimated disability prevalence in South Africa.(Footnote 2)
- there are different definitions of disability;
- different survey technologies are used to collect information;
- there are negative traditional attitudes towards people with disabilities;
- there is a poor service infrastructure for people with disabilities in underdeveloped areas, and
- violence levels (in particular areas at particular times) have impeded the collection of data, affecting the overall picture.
The UNDP estimates that, in 1990, 5,2% of the world population was experiencing moderate to severe disability. This ranged from 7,7% in so-called developed countries to 4,5% in less developed areas.
In its 1995 October survey, the CSS reported a disability prevalence of approximately 5% in South Africa.
It is critical to note that disability does not only affect the disabled individual but also the family and the immediate community.
Another factor that must be taken into account is the tendency of society to view people with disabilities as a single group. Thus, people in wheelchairs have become the popular representation of people with disabilities. This ignores the diversity of disability and the variety of needs experienced by people with different types of disability. (Footnote 3)
Disability and Exclusion
The majority of people with disabilities in South Africa have been excluded from the mainstream of society and have thus been prevented from accessing fundamental social, political and economic rights.
The exclusion experienced by people with disabilities and their families is the result of a range of factors, for example:
The key forms of exclusion responsible for the cumulative disadvantage of people with disabilities are poverty, unemployment and social isolation.
- the political and economic inequalities of the apartheid system;
- social attitudes which have perpetuated stereotypes of disabled people as dependent and in need of care; and
- a discriminatory and weak legislative framework which has sanctioned and reinforced exclusionary barriers.
POVERTY AND EXCLUSION
Poor people face a greater risk of impairment or disability. In addition, the birth of a disabled child, or the occurrence of disability in a family, often places heavy demands on family morale, thrusting it deeper into poverty.
This means not only that there is a higher proportion of disabled people amongst the very poor, but also that there is an increase in families living at the poverty level AS A RESULT OF DISABILITY. This phenomenon seriously hinders the development process.
The International Labour Organisation (ILO) and the UN Development Programme (UNDP) state that a key indicator of poverty is the degree to which people are excluded from accessing basic goods and services. Poor people do not have sufficient income to purchase goods. They also live in underdeveloped areas where there is a lack of sanitation, water, electricity, health services, job opportunities and educational and recreational facilities.
The CSS 1995 October Household Survey confirms this, pointing out that large numbers of people with disabilities live in areas where the infrastructure for the provision of basic services is at its weakest. Hence, a relatively low percentage of disabled people have access to piped water, electricity and inside toilet facilities.
UNEMPLOYMENT AND EXCLUSION
People who receive social security benefits in South Africa tend to be totally dependent on them for their survival. The majority of people with disabilities, however, receive no grant at all.(Footnote 4)
At the same time, an estimated 99% of disabled people are excluded from employment on the open labour market.
The extremely high levels of unemployment amongst people with disabilities can be attributed to a number of factors:
The high level of functional illiteracy amongst disabled adults is a direct result of the lack of educational opportunities for children with disabilities, especially in rural areas. The result is low skills levels and a correspondingly limited access to employment opportunities.
- low skills levels due to inadequate education;
- discriminatory attitudes and practices by employers;
- past discriminatory and ineffective labour legislation;
- lack of enabling mechanisms to promote employment opportunities;
- inaccessible public transport;
- inaccessible and unsupportive work environments;
- inadequate and inaccessible provision for vocational rehabilitation and training;
- generally high levels of unemployment;
- the fact that menial labour is often the only option for poorly skilled job-seekers;
- inadequate access to information, and
- ignorance in society.
As a result, those people with disabilities who DO have jobs often find themselves working in sheltered/protective workshops run either by the Departments of Welfare and Labour, by private welfare organisations or by disabled people themselves. Although the nature and scope of these workshops and self help projects vary considerably, they do not provide people with disabilities and their families with sustainable incomes or opportunities for competitive economic activity.
EXCLUSION THROUGH LEGISLATION
Legislation has contributed to the social exclusion of people with disabilities. First, legislation fails to protect the rights of people with disabilities and, second, through legislation, barriers are created to prevent people with disabilities from accessing equal opportunities.
Although there has, since 1994, been some attempt to identify and eliminate discriminatory legislation from our statute books, many aspects of past discriminatory legislation remain. In addition, some new laws and amendments contain sections which directly or indirectly lead to discrimination against people with disabilities. As a result, large sections of the legislative framework in South Africa still fail to meet international human rights standards and principles with regard to the rights of people with disabilities.
One of the main reasons why legislative discrimination continues to take place is that discrimination is not always obvious merely from reading a statute. Problems often arise when the law or statute is applied.
Although the rights of people with disabilities are enshrined in the Constitution, there is, as yet, no disability specific legislation.
- the way regulations governing specific acts are drawn up;
- the way acts and/or their regulations are administered;
- inappropriate and/or ignorant interpretation of the law, and
- poor monitoring of the law.
Sectors Experiencing High Levels of Exclusion
It is important to recognise that there are sectors within the disabled community which have experienced greater discrimination than others. These sectors have experienced, and still experience, comparatively higher levels of exclusion from the social, economic and political environment.
This demands special targeting in order to redress past and present inequalities. Special attention must also be given to understanding and addressing the conditions which have led to the extreme vulnerability of these sectors. The following are the most vulnerable groups:
WOMEN WITH DISABILITIES, PARTICULARLY BLACK DISABLED WOMEN
South African society is still very patriarchal and discriminatory. Although attitudes are changing, women are still typically viewed as second class citizens, subservient to men and in need of protection. Their social role is, by and large, defined through motherhood and homemaking.
Disabled women experience the same oppression as non-disabled women, but often without even the status that women traditionally receive as mothers or wives. In addition, disabled women experience more discrimination than other women from being unable to live up to the demanding ideals for womanhood imposed by society.
Thus, while it is commonly said that disabled women are women first, then disabled, their circumstances need to be socially contextualised. The very focus of the women's movement - the advancement of an image of women as powerful and competent - has tended to marginalise disabled women. In this context, women with disabilities seem to reinforce traditional stereotypes of women as dependent, passive and needy.
The consequent isolation of disabled women means:
In addition, women who bear disabled children sometimes face rejection and even scorn. Such women, especially in poverty-stricken areas, also often find themselves excluded from social and economic activities due to the additional attention required by, and lack of facilities for, their disabled children.(Footnote 5)
- disabled women are more likely to be poor or destitute;
- disabled women are more likely to be malnourished;
- disabled women are more likely to be illiterate, and
- disabled women have a lesser chance of founding a family.
An alarmingly high proportion of care-givers of disabled children are grandmothers, further exacerbating the disadvantaged circumstances of elderly women in South Africa.
Thus the stigma of disability, its myths and fears are likely to increase women's social isolation in society.
CHILDREN WITH DISABILITIES, PARTICULARLY BLACK DISABLED CHILDREN
South African society still regards children with disabilities as incapable, ill and a burden on society. In other words, they represent a 'problem' to be dealt with separately from other children's issues.
More than 80% of black children with disabilities live in extreme poverty in inhospitable environments. They have very poor access to appropriate health care facilities and early childhood development opportunities.
When born into families of poor socio-economic backgrounds, such children frequently grow up believing that their disabilities are an economic and social curse and burden on their families. As a result, they often perceive themselves to be worthless.
The fact that children with disabilities are unable to defend themselves, are often alone at home and are undervalued by those around them also makes them particularly vulnerable to physical, sexual and emotional abuse.
Such children are also less likely than their siblings to attend school, to go on outings, to experience situations where they have to solve problems or to contribute to household chores. As a result, they grow to be disempowered adults, unable to take decisions, solve problems or take the initiative. This, in its turn, contributes to high unemployment figures amongst adults with disabilities.
Children with disabilities fear and experience exclusion from a very young age. Separation from family, friends and peers is common. Non-disabled children, in their turn, learn that the exclusion of children with disabilities is the norm and therefore socially acceptable. These early experiences reinforce acceptance of segregation in later life.
Although the parents of children with disabilities have a special and specific role to play in the development of their children, mothers (especially) of children with disabilities often face ostracism from their partners, their families and their communities. This exclusion badly affects other non- disabled siblings, the survival of the family as a unit and the meaningful development of the disabled child.
This situation is frequently exacerbated by professionals who take over decision making from the parent(s), insisting that they know what is best for the child. As a result, the mother may lose self- confidence in her abilities not only as a mother, but also as a competent human being.
PEOPLE WITH SEVERE INTELLECTUAL OR MENTAL DISABILITIES
It is commonly considered that the specific needs of people with severe mental/intellectual disabilities fall outside the ambit of development. Such people are likely to be regarded as ill and in need of constant care. They are not, therefore, provided with opportunities to participate in society to the best of their abilities.
People with severe intellectual or mental disabilities are particularly vulnerable during a period of transition from institutionalisation towards community-based services.
A number of investigations in recent years have unearthed gross human rights violations in institutions for people with mental and/or intellectual disabilities. Yet experiences in the United States, United Kingdom and Europe have shown that a MOVE AWAY from institutionalisation often results in people with severe intellectual or mental disabilities becoming homeless and living on the streets, with little or no community support.
People with intellectual disabilities or mental illnesses are also particularly vulnerable when confronted with the justice system. Their testimony is often not taken seriously, they are not regarded as reliable witnesses and they seldom have access to advocates through whom they can speak.
People with severe intellectual disabilities living in rural areas often have a low life expectancy, due to lack of care, support and access even to the most basic services. Families can seldom meet the additional financial burden of regular visits to hospitals, additional expenses for equipment and assistive devices, and other necessaries.
ELDERLY PEOPLE WITH DISABILITIES
The prevalence of disability increases drastically with the onset of old age. It follows that, as the life expectancy of South Africa's population increases, so too will the prevalence of disability in our society.
Poor access to home-based health and social services, especially in rural communities, means that elderly people with disabilities often live in the back-rooms of their children's homes.
Inaccessible public transport and barriers in the built environment mean that services aimed at the elderly seldom reach those with disabilities. This further contributes to the isolation and depression experienced by this group.
PEOPLE WITH DISABILITIES LIVING IN REMOTE RURAL AREAS
One of the many features of apartheid was a severe under funding of social and economic services in the former Bantustans and 'independent' states. This had a particularly severe impact on people with disabilities who found themselves in an inhospitable environment, facing poor living conditions and unable to access the help they needed.
A lack of timeous and appropriate medical care has contributed significantly to an increase in preventable secondary and tertiary disabilities.
Although a percentage of people with disabilities receive social security benefits, these benefits are often used to pay neighbours and family members to perform tasks.(Footnote 6)
In addition, people with disabilities in rural areas seldom have any prospect of engaging in the informal sector, due to poverty, inaccessible public transport systems and social rejection.
YOUTH WITH DISABILITIES
Youth with disabilities are less likely to access youth development programmes than their peers for the same reasons as other groups with disabilities. As with other groups, it is also important to note that there are specific subgroups that experience particular difficulties. These include:
PEOPLE WITH DISABILITIES WHO HAVE BEEN DISPLACED BY VIOLENCE AND WAR
- homeless youth with disabilities (e.g. street children);
- youth with disabilities who have clashed with the justice system (e.g. those in schools of industry or reform schools), and
- the so-called 'out-of-school out-of-work' youth with disabilities who have had little or no access to formal education.
South Africa is slowly emerging from a very violent past. The violence attendant on the implementation of apartheid policies and during the pre-1994 election period contributed not only to disability prevalence, but also to the displacement of large numbers of people with disabilities. In addition, the previous government's policies of destabilisation in neighbouring states resulted in large numbers of disabled refugees entering South Africa.
People with disabilities who have been displaced by violence and war are particularly vulnerable and may suffer additional hardships.(Footnote 7)
PEOPLE WITH ACQUIRED IMMUNE DEFICIENCY SYNDROME (AIDS)
People who are HIV positive suffer from social discrimination similar to that experienced by people with disabilities. This does not, however, imply that they are necessarily disabled. For the purpose of the INTEGRATED NATIONAL DISABILITY STRATEGY therefore, they are not included in the definition of disability, except where symptoms, such as prolonged fatigue, interfere with their normal functioning.
People who have acquired disabilities due to the progression of the illness to full-blown AIDS are a particularly vulnerable group. Often they do not survive the time-consuming processes of applying for social security benefits, assistive devices and other necessities. Furthermore, the very stress brought on by efforts to access the assistance they need often hastens the progression of the illness.
PEOPLE WITH MULTI-DISABILITIES
People with a number of disabilities experience greater problems still. Society is completely unprepared for the integration of this group of people, and their families cannot normally afford to care adequately for them. People with multi-disabilities need special care, a routine stable environment and a wide range of specialised services.
Causes of Disability
Many factors are responsible for the rising numbers of people with disabilities and their consequent isolation from the mainstream of society.
VIOLENCE AND WAR
Disabilities are caused by violence, especially against women and children; injuries as a result of landmines, and psychological trauma.
Disabilities are caused or exacerbated by overcrowded and unhealthy living conditions. Disability feeds on poverty, and poverty on disability.
LACK OF INFORMATION
People do not have accurate information about disability, its causes, its prevention and its treatment. This is because of a high illiteracy rate and poor knowledge about basic social, health and education services.
FAILURE OF MEDICAL SERVICES
The occurrence of disability is increased by the inadequacy of primary health care and genetic counselling services; weak organisational links between social services; the faulty treatment of the injured when accidents occur, and the incorrect use of medication.
Disability is caused by the misuse and/or abuse of medication as well as the abuse of drugs and other substances. It is also caused by deficiencies in essential foods and vitamins. Disability may also be caused by stress and other psycho-social problems in a changing society.
Disabilities are caused by epidemics, accidents and natural disasters; pollution of the physical environment, and poisoning by toxic waste and other hazardous substances.
Disabilities are caused by industrial, agricultural and transport related accidents and sports injuries.
The fact that people with disabilities are marginalised and discriminated against creates an environment in which prevention and treatment are difficult.
The Medical Model
Disability has historically been regarded predominantly as a health and welfare issue and state intervention has, therefore, been channelled through welfare institutions. The responsibility for 'caring' for disabled people has thus generally fallen on civil society. There has been little or no commitment to addressing disability in other areas of government responsibility.
The Medical Model of Disability means that organisations for people with disabilities are usually controlled by non-disabled people who provide services to people with disabilities.
The vast majority of organisations for disabled people were founded by people concerned with creating a more 'caring' environment for different groups of disabled people.
Their aim was usually to provide treatment, or to create alternatives to begging or 'hiding away'. The philosophy was that disabled people were not to be hated or feared, but rather to be pitied or helped as part of the 'deserving poor'.
People with disabilities very seldom had any say in the aims, objectives and management of these organisations. The emphasis was on dependence and the focus on the nature of impairment. This meant that all interventions were based on assessment, diagnosis and labelling, with therapy programmes developed separately and through alternative services. Generally, ordinary needs were not taken into account.
The social attitudes which resulted from the perception of disability as a health and welfare issue have invaded all areas of society. The result is that disabled people and their families have been isolated from their communities and mainstream activities. Dependency on state assistance has disempowered people with disabilities and has seriously reduced their capacity and confidence to interact on an equal level with other people in society.
Thus the dependency created by the medical model disempowers disabled people and isolates them from the mainstream of society, preventing them from accessing fundamental social, political and economic rights.
Social exclusion manifests itself in:
Children as young as three years old are sent off to board at special schools; (Footnote 8)
The Built Environment
Barriers in the built environment prevent people with disabilities from participating in society. (Footnote 9)
Ordinary services are designed and planned on the assumption that they will not be used by disabled people. (Footnote 10)
People with disabilities tend to spend much more time on their own than their non-disabled peers due to the barriers in society.
Information systems (Footnote 11) are often inaccessible to people with disabilities. Sign Language is seldom used.
The Labour Market and Employment Opportunities
A 1985 HSRC/NTB investigation showed that 72,6% of people with disabilities were then economically inactive. Another study estimated that some 0,26% of people with disabilities were employed in the open labour market.
People with disabilities in South Africa came together in the early eighties to mobilise and organise themselves. Their aim was to build a strong civil movement of organisations controlled by disabled people themselves. Central to the disability rights movement is the assertion of disability as a human rights and development issue.
DISABILITY AS A HUMAN RIGHTS AND DEVELOPMENT ISSUE
An understanding of disability as a human rights and development issue leads to a recognition and acknowledgement that people with disabilities are equal citizens and should therefore enjoy equal rights and responsibilities.
This implies that the needs for every individual are of equal importance, and that needs must be made the basis for planning. It further implies that resources must be employed in such a way as to ensure that every individual has equal opportunities for participation in society.
In addition to rights, people with disabilities should have equal obligations within society and should be given the support necessary to enable them to exercise their responsibilities. This means that society must raise its expectations of people with disabilities.
A human rights and development approach to disability focuses on the removal of barriers to equal participation and the elimination of discrimination based on disability.
The Social Model of Disability
The social model of disability suggests that the collective disadvantage of disabled people is due to a complex form of institutional discrimination. This discrimination is fundamental to the way society thinks and operates.
The social model is based on the belief that the circumstances of people with disabilities and the discrimination they face are socially created phenomena and have little to do with the impairments of disabled people. The disability rights movement believes, therefore, that the "cure" to the "problem" of disability lies in restructuring society.
The social model of disability implies a paradigm shift in how we construct disability. Thus:
The social model therefore emphasises two things: the shortcomings of society in respect of disability, and the abilities and capabilities of people with disabilities themselves.
- It is the stairs leading into a building that disable the wheelchair user rather than the wheelchair.
- It is defects in the design of everyday equipment that cause difficulties, not the abilities of people using it.
- It is society's lack of skill in using and accepting alternative ways to communicate that excludes people with communication disabilities.
- It is the inability of the ordinary schools to deal with diversity in the classroom that forces children with disabilities into special schools.(Footnote 12)
This results in an approach that requires that resources be made available to transform so-called "ordinary" amenities and services to cater for a more diverse environment.
The Social Model, therefore, implies that the reconstruction and development of our society involves a recognition of and intention to address the developmental needs of disabled people within a framework of inclusive development. Nation building, where all citizens participate in a single economy, can only take place if people with disabilities are included in the process.
Existing Disability Structures
The paradigm shift (from the medical to the social model) has come about largely through the development of strong organisations of disabled people (DPOs). Central to the concept of the social model of disability is the principle of self representation by people with disabilities through DPOs.
One of the most important initiatives undertaken by the DPOs over the past few years has been the development of a number of charters which express the demands and rights of people with disabilities in South Africa.
DISABLED PEOPLE'S ORGANISATIONS
Disabled People International (DPI) is recognised by the United Nations as the international assembly of disabled people. DPI recognises Disabled People South Africa (DPSA) as the national assembly of disabled people in South Africa. DPSA is a national organisation of smaller community-based disabled people's organisations.
Over the years, a number of parent organisations have also been founded. The Disabled Children Action Group (DICAG) has the largest membership, with affiliated community-based parent organisations throughout the country.
A number of national disability-specific DPOs, with international links, has also emerged over the years. These include:
It is also important that people with intellectual or severe mental disabilities are able to speak for themselves through the use of advocates. The South African Federation for Mental Health has embarked on an advocacy programme to develop the concept of self representation by people with severe mental and/or intellectual disabilities.
- The Deaf Federation of South Africa (DEAFSA)
- The South African Blind Worker Organisation of South Africa (SABWO)
- The National Organisation of the Blind in South Africa (NOBSA)
- The South African Mental Health Federation
- The Quadriplegic Association of South Africa (QUASA)
- The Down Syndrome Forum of South Africa
- The South African Epilepsy League
The disabled people and parent organisations concentrate on advocacy and development work aimed at empowering people with disabilities. Very few of them receive any government support.
SOUTH AFRICAN FEDERAL COUNCIL ON DISABILITY
The South African Federal Council on Disability (SAFCD) is the national umbrella body for all national disability NGOs. It is the national forum where all national welfare organisations, as well as national organisations of disabled people and parents, come together to negotiate and develop common visions for the equalisation of opportunities for people with disabilities. The national welfare councils concentrate on service delivery (Footnote 13) and are part-subsidised by government.
The following service/welfare organisations are affiliated to the SAFCD:
Disabled and parent organisations that have affiliated include:
- The Deaf Federation of South Africa (DEAFSA)
- The South African National Council for the Blind (SANCB) The National Council for the Physically Disabled (NCPD)
- The South African National Epilepsy League (SANEL)
- The South African Federation for Mental Health (SAFMH)
- The South African Foundation of Cheshire Homes
- Occupational Therapy Association of South Africa (OTASA) Dm The Cancer Association of South Africa (CANSA)
- South African Council for the Aged
The SAFCD is the recognised structure interacting with Government on disability issues. Government and the SAFCD are currently investigating the feasibility of transforming the SAFCD into a statutory body.
- Disabled People South Africa (DPSA)
- Disabled Children Action Group (DICAG)
- Down Syndrome Forum of South Africa
- The National Council of Quadriplegic Associations in South Africa (QUASA)
The paradigm shift away from the medical towards the social model implies a change in the way financial support is provided by government. This meant that the development work engaged in by DPOs must be carefully evaluated against work done by the currently funded service organisations.
NATIONAL CO-ORDINATING COMMITTEE ON DISABILITY
The National Year of the Disabled in 1986 saw the establishment of the Inter-Departmental Committee on Disability (ICCD). Its function was to implement the recommendations of the 1986 Report on disability. This structure was, however, disbanded in 1992 after the national disability rights movement pointed out that not a single recommendation had been acted upon.
The National Co-ordinating Committee on Disability (NCCD) was eventually established in 1993 to serve as a co-ordinating and advisory body to government on disability matters during the transitional period. Membership falls within three main categories, namely: key national government departments; national disability service/welfare organisations, and national disabled people organisations.
Four permanent working commissions (on prevention, rehabilitation, equal opportunities and public awareness) and a committee on legislation spearheaded policy proposals in key areas during the transitional period. The South African Disability Institute (SADI) was founded to lend a facilitating, co-ordinating and supporting role.
The NCCD is currently being restructured. After extensive negotiations between government and the NCCD, it was decided that SAFCD should become the representative structure of people with disabilities.
OFFICE ON THE STATUS OF DISABLED PERSONS
The NCCD played a key role in the establishment of the Disability Programme in the Ministry without Portfolio in the Office of the President which was responsible for the Reconstruction and Development Programme (RDP). On the closure of this Ministry, the Office on the Status of Disabled Persons was moved to the Office of the Deputy President where it now has directorate status.
CHAPTER ONE: NOTES
(2) Although estimates of disability prevalence vary considerably, the studies completed by the UNDP and the Central Statistical Service provide important information on the nature and effect of disability on individuals and families in South Africa. This information is reinforced by the recorded experiences of disabled people and their families. Data has also been collected by organisations representing and working with this sector of the population.
(5) The Disabled Children Action Group (DICAG) estimates that 98% of mothers of children with disabilities living in rural areas are unemployed, semi-literate or functionally illiterate single women. Deserted by husbands and lovers, often socially ostracised by their communities, and banished into isolation by their extended families, they tend to withdraw into a world of their own.
(8) Although the overall policy recommendation is for the inclusion of children with disabilities in mainstream education, the Deaf community believes that Deaf children need special schools, claiming that this is of cardinal importance for their concept and learning acquisition.