Although there is no widely accepted definition of persons with disabilities, twodefinitions can be found in the National Policy for Special Education in Pakistan: “Disability” means the lack of ability to perform an activity in a manner that is considered to be normal.
A person with disabilities means a person who, on account of injury, disease, or congenital deformity, is handicapped in undertaking any gainful profession or employment, and includes persons who are visually impaired, hearing impaired, and physically and mentally disabled.
The 1 998 Population Census defined the term disability as, Any restrictionor lack (resulting from an impairment) of the ability to perform an activity in themanner and within the range considered normal for a human being. Impairmentmeans any loss or abnormality of psychological, physiological or anatomical structure or functional”.
According to the census for 1998, there are 3,286,630 people with disabilityconstituting 2.54 per cent of the population (Bureau of Statistics, 1998). Thefigure is underestimated, as the definition of disability did not include moderateand mild disability. Data collectors for the census were not trained to identify andclassify all forms of disability.
Disability has often been regarded as a peripheral issue in discussions onhealth services. Despite a number of progressive policies included in thePakistan’s Constitution that declares equal rights for all, disabled people are stillregarded in the main as an insignificant minority. In the health sector particularly,they are regarded as cases to be cured, tailing which they are referred towelfare for care. I he denial of human rights, and the exclusion andmarginalization of disabled people is manifested in many forms within the healthsector.
To date in Pakistan, services for disabled people have been based on anunderstanding of disability as individual pathology, the disabled person beingseen as a problem to be corrected. Its development can be traced to the greatstrides in medical science and technology, which led many to believe that dysfunction, could be explained through rational scientific argument; the cause of any condition regarded as abnormal being attributed to the malfunction of a physiological system. Pathology thus provided the means by which “dis”-ability could be distinguished from able-bodiedness, “ab”norrnality from normality. Disability as malfunction has since grown to be seen as a specialized health problem, at the heart of which is an emphasis on clinical diagnosis. Consequently the aim of medical rehabilitation is to assist the individual to be “as normal as possible”.
in traditional societies such as Pakistan where education is low and economic development has not taken off, any disability among household members is normally concealed, especially disabilities acquired from birth or those developed soon thereafter. Intellectual disabilities and physical deformities arc perceived as stigmata since their existence could jeopardize the “family name”, which becomes especially important in societies with extended Families. The existence of any disability related to psychological concerns that results From congenital antecedents is considered a serious threat to a family’s social status. The family’s concern is related to the social discrimination that other people would likely demonstrate, which in the view of the family concerned justifies concealing the existence of such offspring.
Another reason why family events relating to disabilities are concealed relates to the “exchange” phenomenon in marriages, especially on the bridegroom’s side. The fear that other children in the family concerned may also carry genes which could adversely affect their progeny means that parents often will not reveal that such a person exists in the family, since it would be difficult For them to find spouses for their other, non-disabled children. Such fears are much greater fur families that are socially mobile or who have a relatively higher social status.
The Religious/Moral model is historically the oldest and is less prevalent today. However, there are many segment of society in Pakistan that associate disability with sin and shame, and disability is often associated with feelings of guilt, even if such feelings are not overtly based in religious doctrine. For the individual with a disability, this model is particularly burdensome. This model has been associated with shame on the entire family with a member with a disability. Families have hidden away the disabled family member, keeping them out of school and excluded from any chance at having a meaningful role in society. Even in less extreme circumstances, this model has resulted in general social ostracism and self-hatred.
In poverty-stricken developing society, like Pakistan, where additional hands are always needed to assist with family work, thereby supplementing family income, the existence of a person with a disability is considered a curse orunfortunate fate for the family concerned. The loss of family labor in addition to the diversion of family resources to care for the needs of a child with a disability usually results in additional fertility to offset the loss of that child’s potential contributions to family income. The assumed need for having additional children could lead to reproduction within a short interval to neutralize potential social pressure and possible social sanctions. In following this line of reasoning, the cause of the original congenital disability and the potentially adverse consequences of another pregnancy on maternal health are relegated to a position of lower importance than the need for reproduction.
In societies lacking social norms and institutions that should provide family support in terms of the socialization and rehabilitation of persons with disabilities, families are put under extra pressure owing to the heavy demands on their time to make up for this lack of support. The presence of a disabled person in a family is thus considered a life-long problem, because the person concerned is expected to remain always dependent on other family members for support. In addition, the person with a disability represents a loss of productive potential in terms of society. The social pressure to bear additional children who can help to support such disabled persons leads to enlargement of the dependent population. Further, in their haste to respond to social pressures, couples usually ignore the possibility of giving birth to yet other children with congenital disabilities. These attitudes are among the complex sociological perspectives involved in treating the subject of disabilities.
of consider these facts, The Tragedy/Charity Model is still exists in Pakistan which actually casts the disabled person forever in the “poor unfortunate” role, It emphasizes and encourages dependence on others rather than independence one might say it is a form of “killing with kindness” since if this is taken to extremes the disabled person may lose those life skills they had and become increasingly dependent. The disabled person is represented as “brave” and “admirable” solely because they live with their impairment, an object of pity and the focus of attempts to extort money from others in order to address the person’s extensive and expensive needs. There is little or no recognition of the potential for independence or of the role of the disabled person in selecting the services they need or want. however, important changes were to occur with the evolvement of the modern era profoundly influenced by the enlightenment.
One of the difficulties likely to be encountered is the negative impression created by the very widespread presence of disabled persons, whether neighborsor relatives, for whom no rehabilitative treatment is available. The problems of disability seem to be quite familiar to the general public in Pakistan, whereas there is little or no conception of solutions. It is not surprising in these circumstances that attitudes focus on helplessness and hopelessness. It will presumably be difficult to remove this impression before there has been a major upswing in the provision of rehabilitative services. Equally it will be difficult to provide facilities without a favorable climate of opinion. Attitude and provision must advance together.
Traditionally used by charities iii the competitive business of fund-raising, the application of the Tragedy/Charity Model is graphically illustrated in the advertisement on newspapers and televised Children in Need appeals in which disabled children are depicted alongside young “victims” of famine, poverty, child abuse and other circumstances. Whilst such appeals raise considerable funds for services and equipment which are not provided by the government, many disabled people find the negative victim-image thoroughly offensive.
The idea of if being recipients of charity lowers the self-esteem of people with disabilities. In the eyes of “pitying” donors, charitable giving carries with it an expectation of gratitude and a set of terms imposed upon the beneficiary. The first is patronizing; the second limiting upon the choices opens to disabled people. Also, employers will view disabled people as charitable cases. Rather than address the real issues of creating a workplace conducive to the employment of people with disabilities, employers may conclude that making charitable donations meets social and economic obligations.
This is not to advocate dismantling charities and outlaw caring, charitable acts, which enrich our society and bring badly needed funds. But we do need to educate charity managers and professionals to review the way they operate and ensure that funds are channeled to promote the empowerment of disabled people and their full integration into our society as equal citizens — requiring our respect and not our pity.
The specific type and amount of neglection against disabled children will vary depending upon whether it occurs within the family, in the community, in institutional settings or in the work place. There are however, several key issues that appear time and again when such behavior occurs. Most striking is the issue of reoccurring stigma and prejudice. From the date of independence to date in Pakistan many although not all communities have dealt poorly with disability. Cultural, religious and popular social beliefs often assume that a child is born with a disability or becomes disabled after birth as the result of a curse,’bad blood’, an incestuous relationships, a sin committed in a previous incarnation or a sin committed by that child’s parents or other family members.
A child born in a community where such beliefs exist is at risk in a number of ways. A disabled child is more likely to face extreme negative attitudes at birth and this increased risk for ignorance reappears throughout the life span. This behavior compounds already existing social, educational and economic marginalization that limits the lives and opportunities of these children. For example, disabled children are far less likely than their non-disabled peers to be included in the social, economic and cultural life of their communities; only a small percentage of these children will ever attend school; a majority of street beggars are disabled children. Disabled children living in remote and rural areas may be at increased risk.
in societies and including Pakistan where there is stigma against those with disability, research indicates that some parents respond with ignorance because of the shame the child had brought on the family or respond with violence because a lack of social support leads to intense stress within the family.
in Pakistan, while many parents are submissive towards children where no disability exists, when a disabled child lives in these setting his or her disability often serves to compound and intensify the nature and extent of the abuse. For example, a mobility impaired child may be less able to flee when physically assaulted. A child who is deaf may be unable to communicate about the abuse he or she faces to anyone outside his or her household, unless these outsiders speak sign language or understand the home signs the child uses. A child who is intellectually impaired may not be savvy enough to anticipate a parent’s growing anger or know when to leave the room to avoid being struck.
Regular observations of child rearing practices in Pakistan indicate that a disabled child faces increased risk as the result of child-produced stress, It is hypothesized that this cycle of increasing tensions can begin long before the child is diagnosed as having a disability. For example, a child with a hearing impairment may be regarded as disobedient; a child with vision problems may not make eye contact and appear to be unresponsive, a child with a neurological disorder maybe difficult to comfort or feed. Other researchers suggest that parents who become violent towards their disabled child are reacting not to the child’s condition alone, but to the social isolation and stigma they encounter from surrounding family, friends and neighbors.
Parents of disabled children often lack social supports as family and friends distance themselves; they can find no school willing to take their child or theylive in communities where there are few or no social services to help them with their child’s needs. It is possible that both child-produced stressors and social isolation are compounded to produce a stressful in a household coping with a disabled child. It is also true that not all households with disabled children in Pakistan are stress prone and even within the same communities there are coping mechanisms in some families that prevent this behavior, while children with identical disabilities in other households are subjected to burden. As with many aspects of negative attitude towards disabled children, at this point, much more research in Pakistan is needed to allow us to adequately understand the factors that inhibit or foster these attitudes towards disabled children.
The disabled child in a majority of household may receive less food, medical care or other services. This can be subtle, for example, parents or caretakers may wait a few additional days before spending scarce money for medicine or the child may receive less food or less nutritious food than his or her sibling. The low socioeconomic status of the family and the present inflation rate prevailing in the country may worst the situation a lot. Such neglect can lead to further impairments in a vicious feedback cycle in which the disabled child continually loses ground developmentally.
Such neglect may be further exacerbated by gender for example, in Pakistan mostly parents spend huge money for boy children’s disability that for girl children, despite the fact that disability itself affects equal numbers of males and females. Neglect, in the form of the lack of adequate medical care, less nutritious food or lack of access to related resources, is the apparent cause of these deaths.
In Pakistan as a general practice, the child is kept home to ensure his or her own safety, as parents fear that the child may be struck by a cart or abused by someone in the neighborhood. But in many other instances, even in educated and/or porch families a child is kept isolated because the family fears the reaction from other members of the community. As per treatment given by clergyman, children in some communities are kept shackled in windowless storerooms, hold hands and feet with iron chain, hot household courtyards or dark attics for night, often with little or no interaction, even by those within the household. Even in the next door neighbors may not know of the child’s existence. Here is a need to create awareness among parents to send their disabled in special schools, for this see Box No. 1 for this purpose.
When it comes to convincing Pakistanis that special education is important, especially the rural poor, the key individuals that arguments must be targeted toare parents. Parents must be persuaded that special education is valuable and necessary for their children with special needs.
School administration, social service and child advocacy agencies may be aware that a disabled child Is the victim of violence or neglect, but choose to keep that child in the household because there are few or no residential care facilities are available in the country.
The response of disabled children themselves to on-going violence within the home is dictated by a number of factors. They may be aware that this type of behavior is unacceptable, but fear loss of relationship with care giver or family member. While this is an issue for many children in violent households, for disabled children dependent on their abusers for physical care, communication with the outside world or other disability-specific concerns, these issues are more complex. S/he is also be aware that this type of behavior is unacceptable, seek to alert authorities, but are not listened to or believed.
Unfortunately, in Pakistan, individuals who work as teachers, attendants for disabled children, or help transport, feed or care for such children, are often underpaid, overworked and largely unsupervised. While many who undertake such career choices do so out of the best of motives.
Very few schools have mechanisms in place that allow students, parents to complain about victimization of these negative attitudes. This is all the more serious because in many areas of Pakistan and specially in rural areas there are only a handful of schools or educational programs that are available for disabled children. Parents/caregivers or children may hesitate to complain about abusive behavior in the school, fearing that they will be dismissed from a program when no alternative exists.
Mostly in Pakistan, Disabled children are often kept in environments that can only be described as inhumane. Institutions for disabled children are often at the bottom of government priority lists and lack adequate funding, consistent support or oversight from government or civil society. Institutions are often overcrowded, unsanitary and suffer from lack of both staff and resources which lead directly to avoidable suffering and below the growth standards.
The low pay, low social status, long hours and hard working conditions in many institutions means that workers are hard to find and administrators are quick to hire anyone. Background checks on personnel often are not done. This allows some individuals, intent on harming or exploiting children, to regularly seek work in such institutions. Because of lack of a registry or oversight of suchpredators when an abusive employee is discovered it is not uncommon for that individual to be tired from one institution and soon turn up working at another institution for disabled children nearby.
Compounding this, as noted earlier, individuals with disability and their families tend to be ftir poorer than other members of the population, and this poverty can severely limit the ability of disabled children and their families to afford light for their rights. The large number of disabled children and their families who live in poverty also reduces that number of disabled young people able to afford related private special schooling.
Because disabled children frequently receive no formal education or low quality education, their working lives often begin earlier than those of their nondisabled peers. Furthermore, because they are rarely trained or apprenticed for a specific trade or skill, they are often sent to work at the most menial jobs, constituting some of the harshest forms of child labor. While it is known that many disabled children are in the workplace, little information on these children exists because most find work in informal sectors of society – as house servants, farm workers, in shops or in factories.
Honestly speaking, in Pakistan, documentation of this attitude against disabled children in the workplace is therefore absent or very rare. However, knowledge from other realms of disability research can provide some insight. For example, those disabled children who are unable to work as quickly as their non- disabled coworkers, or those who are unable to hear to understand or follow directions, are at risk of being insulted and bullied. Because finding and keeping work for individuals with disability is difficult in most societies (i.e.: even in developed countries, the unemployment rate for adults with disability often is above 80%) disabled children and adolescents have little voice in the workplace and are at risk not only for physical and verbal abuse, but are also less likely to report such abuse or to quit should they be abused.
In Pakistan, especially in rural areas and also most of the developing and under developing countries, the most common form of employment outside the household for poor disabled children may be begging. Disabled children are regularly used to generate income through begging. Some are placed on the streets to beg by their own families, some are sold by their families to others who keep stables of disabled children in organized rings of beggars. Either way, reports and anecdotes from dozens of countries indicate that such children are routinely subjected to violence both in order to keep them on the streets and once on the streets, by members of the general population, who see such children as easy prey.
In more recent times, however, the notion of ‘disability’ has come to be conceptualized as a socio-political construct within a rights-based discourse. The emphasis has shifted from dependence to independence, as people with disability have sought a political voice, and become politically active against social forces of disablism. Disability activists, in engaging in identity politics, have adopted the strategies used by other social movements commanding human and civil rights. And these strategies have brought gains, but within certain limitations.
In Pakistan, from the mid 1980’s, the country has enacted legislation which embraces a rights-based discourse rather than a custodial discourse; and which seeks to address issues of social justice and discrimination. The legislation also embraces the conceptual shift from disability being seen as an individualized ‘medical problem’ to rather being about community membership and participation, and access to regular societal activities such as employment, education, recreation and so on. Where access is inappropriate, inadequate, difficult or ignored, advocacy processes have been initiated to address situations and promote the people’s rights.
Yet, rights-based discourse, although employed as a political strategy, has also become a way of constructing disability by locking people with disability into an identity which is based upon membership of a minority group. Entitlements thus become contingent upon being able to define oneself as a person with disability. And the conceptual barrier between ‘normal’ and ‘abnormal’ goes unchallenged, so that while one may have entitlements legislatively guaranteed, ‘community’ which cannot be legislated for, remains elusive.
While rights-based discourse, at a strategic level, has brought some additional entitlements to people with disability, it has not significantly altered the way in which disability is constructed and so, despite legislative changes, some people’s lives have not necessarily changed. Rights-based discourse fails to meet these challenges for, rather than seeking to dismantle the entire concept of disability, it actually relies upon such a construction to support its claims for rights and entitlements.
Part of the problem with the subject of education of disabled children in Pakistan is that it suffers from a lack of identity as a discipline or part of a discipline, and it operates in relative isolation from other relevant disciplines. Therefore it does not benefit from the research in other disciplines, and lacks accountability. An alternative approach would aim to acknowledge these difficulties, to draw onother disciplines where relevant, and to locate the subject within a development framework.
HOW WE IMPROVE THE SITUATION:
Improvement shall only be possible when we will work on each and every sector which prevents disability to its severe consequences. The following discussion highlights some of these areas.
1. Prevention:
The majority of disabilities are preventable. There are, however, a number of reasons why there is a failure to prevent disabilities in Pakistan. Although there are a number of policies aimed at preventing disabilities, there is no coherent coordination between the various government departments to ensure that these policies are properly carried out. Also, there are a number of areas in which policies should exist, but do not.
It is recommended that the Ministry of Health, in consultation with other relevant departments and the Directorate General of Special Education (DGSE), facilitate the development of a National Inter-SectoralDisability Prevention Strategy that will set national norms and minimum standards for the prevention of disabilities.
2. Public Education and Awareness Raising:
One of the greatest hurdles disabled people face when trying to access mainstream programs arc negative attitudes. It is these attitudes that lead to the social exclusion and marginalization of people with disabilities. Negative attitudes are continually reinforced. Disability is portrayed as a ‘problem’ People with disabilities are viewed as helpless and dependent; as ill and in constant need of care and medical treatment, or as tragic victims.
Culture plays an important role in the way we relate to people with disabilities. This contributes to the perception of people with disabilities as different or ‘outsiders’. The changing of attitudes is not something that happens automatically or spontaneously. Attitude changing is a complex process which involves moving, in a series of stages, from one set of attitudes to another. Public education and awareness are central to the changing of attitudes.
3. Health Care:
Appropriate, accessible and affordable health services at primary, secondary and tertiary level are essential to the equalization of opportunities for people with disabilities. Such services should include general medical and nursing assistance on an in-patient, out-patient or community home care basis, and specialized health professional assistance.
4. Rehabilitation:
Access to appropriate rehabilitation services can make the difference between leading an isolated and economically dependent life and leading an economically independent life and playing an active role in society. The main policy objectives should be: to enable peo5le with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric, and/or social functional levels; to provide people with disabilities with the tools to change their lives and to give them a greater degree of independence; to prevent secondary disabilities or to reduce the extent of disability; to take into account the specific needs of different disability groupings.
5. Assistive Devices:
Assistive/rehabilitation technology enables individuals with disabilities to participate on equal terms. If people with disabilities are to access their rights and responsibilities and participate in society as equal citizens, they must have access to appropriate and affordable assistive devices.
The production, supply and maintenance of assistive devices are presently uncoordinated. Imported devices are steeply taxed, making them very expensive. Initiatives to develop appropriate and affordable assistive technology have, to date, taken place in isolation from general technology development (i.e. they are aimed at a ‘special market’), with very little participation by consumers, or collaboration between the various sectors and agencies.
With the assistance of modern technology, products should be developed for use by people with a range of different disabilities. The aim should be to reduce costs by producing for a larger market. This may require greater standardization of products.
6. Barrier Free Access:
The way in which the environment is developed and organized contributes, to a large extent, to the level of independence and equality that people with disabilities enjoy.
There are a number of barriers in the environment which prevent disabled people from enjoying equal opportunities with non-disabled people. For example:
structural barriers in the built environment; inaccessible service points; inaccessible entrances due to security systems; poor town planning; and poor interior design.
It is recommended that the Department of Public Works, in consultation with the National Environment Protection Agency (NEPA) and other stakeholders, develop national guidelines and minimum norms and standards with regard to barrier-free access.
7. Transport:
There is a need for rapid progress in developing a public transport system that is flexible and accessible. Without this, people with disabilities will continue to remain largely ‘invisible’ and unable to contribute to, or benefit from, the services and commercial activities available to most of their fellow citizens. Given the fact that the ability to use services, or attend school or work, is largely dependent on the ability of people to get there, the lack of accessible transport is a serious barrier to the full integration into society of people with disabilities.
A large proportion of the population uses the bus services as their chief mode of public transport. Policy makers tend to focus on wheelchair-lift equipped buses when considering access. There are, however, a number of low-cost accessible features that could be considered in the short term.
Dial-a-ride services have proven particularly popular in densely populated areas. The primary distinction between this service and existing services operated by welfare organizations is that people are able to use the service for any purpose, whether to work, school or for social reasons.
Although the major airports in Pakistan have introduced extensive upgrading projects to make their facilities more user-friendly, smaller provincial and regional airports still remain extremely discriminatory against disabled commuters. This is, in part, due to a lack of information on national guidelines and minimum standards and norms. The larger airlines have introduced personnel training programs to facilitate a more sensitive service from airline staff.
8. Communications:
Sign Language is the first and natural language of Deaf people, whatever thespoken language of his or her hearing parents may be. Sign Language is thecentral focus of Deaf people’s human rights. It is important to note that Sign Language is a language in its own right, with its own grammar and syntax. Sign Language uses the modality of space, in contrast with the spoken language which uses the modality of sound. There are several regional variations of Sign Language in Pakistan.
Special Language Systems/Augmentative and Alternative Communication refer to any mode of communication used by people who can not use a spoken or sign language. They include Braille, touch, Bliss symbols or other means of communication.
Interpreter services are linked closely to the communication needs of Deaf people and people with limited or no speech. These services enable them to communicate freely with society, and arc an essential clement in the achievement of equal opportunities for people with communication disabilities. They include Sign Language interpreters, lip speakers,
