* The author is with Pakistan's National Institute of Population Studies, Islamabad.
Poverty is a major cause of disabilities. However, progress in social welfare of a society can be gauged from how well persons with physical and psychological disabilities are able to be rehabilitated so that they can become productive members of the population. It was for the purpose of drawing attention to this aspect of population development that Governments in the ESCAP region proclaimed the period 1993 to 2002 as the Asian and Pacific Decade of Disabled Persons. That action was followed later in 1992 by the Proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region, and the adoption of a related Agenda for Action (ESCAP, 1994a). These powerful mandates are aimed at helping developing countries such as Pakistan to adopt policy initiatives and programme actions that would improve the broad living conditions of the proportion of the total population that is disabled. In order for countries to plan specific rehabilitative programmes for persons with disabilities some basic elements are required, including valid data regarding types of disabilities, the ages of persons with disabilities, the causes of their disabilities and places of concentration. If the quality of the data is poor, the planning of rehabilitation programmes becomes a useless exercise. The collection and analysis of comprehensive and accurate data on the national disability situation is such an important factor that it is included as one of the basic policy categories in the Agenda for Action. Another prerequisite encompasses clarity in a society's perception of persons with disabilities: if those persons are viewed negatively, as a dependent burden for example, it will be difficult for that society to focus on the person, the human resource whose abilities can be developed to enable him or her to become a productive partner in the national development process. Thus, removal of the stigma attached to deformities etc., is another policy concern.1 The seriousness with which a society handles issues related to persons with disabilities is reflected in the effort it puts into various stages of programme development and, more importantly, into assessing the quantum of and increase in disabilities, and the way disabled people are integrated within the development process.
The need for accurate data on the situation in Pakistan is apparent. For example, a comparison of the 1961 and 1981 population censuses would seem at first glance to show an alarming increase in the number of people with disabilities in Pakistan. However, compared with data from the 1973 Housing, Economic and Demographic Survey, the validity of those previously referred to data becomes doubtful. For instance, according to the 1981 census, out of every 1,000 households, about 30 could be expected to have one person with a disability; the 1961 census produced an estimate of about 19 (HAD, 1964). By contrast, according to the 1973 Housing, Economic and Demographic Survey (CO, undated), there were 115 persons with disabilities out of every 1,000 households. Do these data mean that there has been a dramatic rise in the disability rate in Pakistan? Hardly so, yet such wide variations in data would make one lose confidence in their credibility. In view of the unreliability of these data, what basis do we have for planning programmes to benefit persons with disabilities in Pakistan?
The paucity of reliable data regarding the prevalence of disabilities and the magnitude of the population with disabilities is quite well known. It is also well known that people are increasingly being disabled owing to malnutrition and disease, environmental hazards, natural disasters, traffic and industrial accidents, and various forms of conflict. Also as more of the population survives to older ages, the number of elderly people with disabilities is rising (ESCAP, 1994a). Thus, because valid and reliable data are essential for the development of a comprehensive plan for the welfare of those in the population with disabilities, this study highlights some of the dimensions that could invalidate or inhibit the reliability of information about this portion of Pakistan's total population and suggests measures for upgrading the quality of data on persons with disabilities. However, the current situation does not mean that special programmes are not undertaken to prevent disabilities. In the recent past, both the Government's expanded programme on immunization (EPI) and the oral-rehydration therapy (ORT) programme have been successfully implemented to control childhood diseases, especially polio and cholera and other diarrhoeal diseases, respectively. None the less, in order to assess the impact of these efforts and insure total coverage of the population on a national basis, accurate data are essential. Accurate data are necessary for the formulation of special programmes such as the one to introduce vitamin A to prevent blindness in rural areas, or the use of iodized salt in northern Pakistan to prevent goitre. Managers of such programmes need elaborate data on disabilities, the reasons for them, regions of concentration, and various socio-economic and demographic differentials. Thus, this study is divided into three major sections. Firstly, a sociological perspective of disabilities and their underreporting is provided; secondly, sources of data on disabilities and the problems connected with them are discussed; and thirdly, a section is devoted to recommendations for improving the quality of the data needed for assessing this proportion of the total population.
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 are 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 for families that are socially mobile or who have a relatively higher social status.
Persons with disabilities are also defined in sociological terms, according to the limitations the disabilities impose. Persons who cannot perform or fulfil socially recognized roles or do not have the potential or capability (intellectual or physical) for ever performing such roles may be referred to negatively as being "handicapped" (see footnote on p. 62). The stigma associated with such disabilities emanates from the fear of discriminatory behaviour from others, because of the inability of the person concerned to perform expected roles. The total dependence of such individuals on other family members for the performance of necessary social and other functions is an alternate explanation for the intensified fear of stigma and alienation exhibited by the family concerned. It is the absence of a social support system that would accommodate disabled persons' roles that intensifies the fear of stigma, especially when the disability is genetic or congenital. If persons with disabilities could perform the roles expected of them later in life after they have gradually assimilated the necessary skills to do so in the course of daily life, their presence in the household can be made known publicly. When such individuals are not considered a threat to the family's name and social status, or when the family feels it is appropriate to provide socialization of those persons beyond his or her own family circle, they may take their place in society.
Religion also plays an important role in identifying the status of disability. For instance, in more traditional societies, the occurrence of a congenital disability is often associated with superstition, the belief that extra-terrestrial influences caused the disability, which enables their existence to be rationalized, although for the individuals concerned, they are socially isolated and become objects of pity, if not fear and hatred.
In poverty-stricken developing societies 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 or unfortunate fate for the family concerned. The loss of family labour 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.
In order to determine the level and pattern of disabilities in Pakistan, data at the aggregate level have been collected by censuses. The importance of the portion of the population with disabilities can be observed from the regularity with which data on this population have been collected since the time of the 1961 census. Prior to that time, no information existed on disabilities at the national level. In the population censuses of 1961 and 1981 and the Housing, Economic and Demographic Survey (HED) of 1973, information was collected on the census long form from a sample of households selected on a probability basis; this survey was conducted soon after the main census. All information on disabilities was recorded as reported, supposedly, by an adult living in the household, not necessarily the head of the household. However, these respondents, whether male or female, often had various biases with regard to reporting the incidence of a disability in the household, especially if the person(s) concerned were at younger ages, since the family could expect to attract social sanctions for revealing such facts. Moreover, information on the degree of disability was left totally to the discretion or perception of the respondent to reveal.
As mentioned previously, data on the cause of disabilities, treatment and rehabilitation, and economic activity of the persons with disabilities are necessary for programme planning purposes. Until the mid-1980s no source provided data on a number of other aspects regarding this portion of the population on a national scale. During the period 1984-1985, the Federal Bureau of Statistics (FBS) conducted a national survey to fill this data gap (FBS, 1986). Similar to a census, this survey also focused on household-level information collected on a quarterly basis. The survey concentrated on specific physical and intellectual disabilities that could place serious constraints on an individual's mobility for more than six months. Data on seven major causes of disability were collected: blindness, deafness, mutism, leprosy, retardation, lameness and "handicaps". A national sample of 5,638 households was surveyed to assess the incidence of these disabilities. Unfortunately the categories and definitions of disability were not consistent with those of the 1981 census, thus making it impossible to compare disability-specific rates.
In order to collect valid, in-depth information on disabilities, a special survey was conducted in the Islamabad and Rawalpindi districts in 1986 (DGSE, 1986). This pilot survey encompassed a comprehensive instrument through which individuals were first screened, and detailed information was asked on mental retardation, visual and hearing disabilities, physical disabilities in the form of paralysis, deformity and wasting of the limbs. Details were also collected about the cause and date of onset of the disability. The advantage of this survey was the employment of professionals who physically verified the data and staff highly trained to enumerate a simplified questionnaire with close supervision.
Definitional issues
The physical disabilities that were enumerated in the 1961 census included blindness, deafness, mutism and physical deformity (HAD,1964). Interviewers were instructed to classify a person as blind if that person could not count the interviewer's fingers from a distance of 30 cm; physical deformity was defined as one or more limbs being permanently non-functional. Persons with both hearing and speaking disabilities were likewise enumerated.
During a census enumeration, there are several instances when persons with disabilities can be omitted. For example, not all persons with disabilities are seen or examined personally by the enumerators; thus, the respondent's subjective judgement about such persons would play an important role in reporting the degree of hearing and speech impairments, or ability to use one's limbs etc. Further, even if such a person could see blurred images, if he or she were totally illiterate, this could complicate matters further.
The 1973 HED survey added an additional category: "other handicap", which despite being quite vague could still account for the reporting of physical disabilities. It was only in the 1981 census that questions were asked about and answers recorded on both physical and mental disabilities: blindness, deafness and mutism, physical deformity or inability to walk, mental retardation, "insanity" and "other handicap".
Mental disorders included disabilities acquired at birth, whereas the term "insanity" could indicate a psycho-social disability, or a condition which prevents a person from carrying out everyday tasks. The addition of this information in the data collection process basically removed some of the ambiguity involving the concept of disability; in addition, it reflected the Government's growing interest in examining the status of population quality, especially in terms of mental health. Although the Government's concern about collecting valid information is genuine, the way this sensitive data is collected has been very casual. Dependence on the respondent's perceptions and judgement in defining mental disabilities plays a major role in such data collection. Therefore, temporary or mild mental illness is not differentiated from permanent and serious disorders such as paranoid schizophrenia. Such a "snap-shot" of mental quality encompasses a vast variety of emotional or psychological disorders, none of which is discussed openly in Pakistani society. Both factors have negatively affected reporting of the incidence of mental disabilities. For instance, unless respondents are asked about the duration and intensity of the mental illness, the exact nature of the condition that renders individuals disabled cannot be determined with any degree of accuracy.
In the 1984-1985 survey of persons with disabilities, the definitions of blindness included temporary blindness, and that of deafness included partial deafness (FBS, 1986). Such definitions were loose and relaxed as compared with those of the 1981 census (PCO, 1984). The enumeration also depended heavily on the respondent's judgement without considering his or her potential for bias. However, for the first time, the survey revealed national- level data on leprosy and physical deformity as well as physical and mental retardation.
Although the Islamabad/Rawalpindi pilot survey obtained highly valid information, the main problem remained the lack of comparability with previous data sets. The pilot survey focused on four major physical and mental disabilities. However, owing to the limited size of the sample survey, the data could not be reliably compared with data from any census or national-level survey. On the whole, data on the disabled population in Pakistan present a number of problems including those of definitions, reference periods, inconsistent categories, heavy dependence on the respondent's judgement which obscures objectivity and makes difficult, if not impossible, the ability to compare data sets.
Trends in disability
There are several ways data could be erroneous. There are reporting errors encompassing the respondent's biases, the interviewer's mistakes in coding and recording, his or her fatigue, rapport and interest in data collection as well as biases and manner of presenting questions. Data on disability could also be affected by the interviewer's training and degree of supervision. Census data collection has its own administrative supervision which concentrates mostly on the coverage of households rather than on the quality of data. The census coverage is usually massive. Therefore, the interviewer's fatigue, disinterest and bias could easily cause the introduction of errors, especially with regard to relatively low ranked priority areas such as the disabled population. Described below are some of the analytical errors detected which need to be identified for possible corrective measures in future censuses or surveys.
Distribution
Misreporting by respondents may be considered as a major factor contributing to the collection of erroneous data on the size of the disabled population. The following analysis focuses on possible sources of errors affecting the validity of data. The database on persons with disabilities in Pakistan is not comparable across censuses owing to definitional differences and selectivity of disability in different instruments. Comparing the proportion of the population disabled (table 1) in the 1981 census with that of the HED survey, it may be observed that the 1973 figures are much too high. These values lead to an uncertainty about the incidence of disability in the country. It is speculated also that underreporting is quite prevalent, especially for persons at the younger ages. Underreporting is further increased by the subjective nature of responses to various questions asked in the census. The general impression from the percentage of the population disabled indicates that in the early 1980s more than four persons per thousand population were physically or mentally handicapped and as such dependent on other household members for support and/or full- time care. This seems to be a high proportion considering the population growth rate and the actual size of Pakistan's population, i.e. 124.5 million in mid-1994 (ESCAP, 1994b).
The percentage distribution of the population of persons with disabilities shows an expected pattern by age group, i.e. a positive relationship between age and the incidence of disability. Concealment of information about persons with disabilities at younger ages is quite obvious from table 1. In contrast, with an increase in the number of disability categories in the 1981 census and the 1984-1985 survey, it is observed that a higher percentage of persons with disabilities is reported at younger ages. The decline in the percentage disabled among those aged 40 years or older, from 58.8 per cent in 1973 to 44.6 per cent in 1984-1985, could be attributed to this shift. A very large proportion of the population of persons with disabilities is reported for those aged 60 and older, which encompasses persons with age-related physical disorders. If the disability time-trend between 1961 and 1981 is considered, one may observe an increasingly smaller proportion of people with disabilities at older ages, especially after age 60, and a substantial increase among children aged 5-9 years. This may not be an actual shift, but rather a distribution closer to reality and may present a lesser degree of distortion due to the misreporting of disability among younger people. The picture emerging from the 1981 and 1984-1985 data would seem to indicate that a quarter of all disabled Pakistanis are under 15 years of age. If the data are valid, this situation should send an urgent signal to health policy makers of an increasingly deprived population that needs immediate attention.
| 1961 | 1973 | 1981 | 1984/85 | |
| Total population | 42,880,378 | 60,509,535 | 84,253,644 | - |
| Number disabled | 135,668 | 1,257,454 | 371,420 | - |
| Percentage of total | 0.23 | 2.08 | 0.44 | - |
| Total | 100.0 | 100.0 | 100.0 | 100.0 |
| Age group | ||||
| 0- 4 | 13.4 | 3.9 | 3.4 | 3.4 |
| 5- 9 | - | 2.6 | 8.3 | 9.2 |
| 10-14 | 16.7 | 8.8 | 8.1 | 10.9 |
| 15-19 | - | 3.8 | 6.6 | 9.5 |
| 20-29 | 21.3 | 12.6 | 12.5 | 13.5 |
| 30-39 | - | 9.5 | 10.4 | 8.7 |
| 40 + | 48.6 | 58.8 | 50.7 | 44.6 |
| 60 + | - | 40.1 | 34.7 | 24.3 |
Disability rates
Calculation of disability rates is the basic measurement for understanding the intensity of disability in the population at large. These rates are calculated for those who are currently disabled from among the population of persons with disabilities and those at risk of becoming disabled for any reason. The disability rate is expressed as the number of disabled persons per thousand mid-year population:
Disability rate = (Number disabled / Mid-year population) x 1,000.
For specificity, age-specific disability rates may also be calculated because persons at various ages are exposed to differential risks of becoming disabled. A comparison of age- specific rates would show how reported data measures differ from an expected pattern.
Table 2 shows the disability rates calculated for the 1981 census and the 1973 HED survey. The completeness of disability categories in the 1981 census is better than those of the HED survey, and the absolute number of disabled persons does not seem to be as exaggerated as in the 1973 survey. Furthermore, the 1973 HED rates show steep fluctuations, indicating some problems with the data obtained for various age groups. The overall estimates for 1981 depict a rate of 4.5 persons with disabilities per thousand persons in Pakistan (table 2) compared with 21 per thousand disabled in the 1973 survey; such differences indicate a high degree of incomparability to say the least. Age-specific rates also show a positive relationship with age for the 1981 census, implying adverse effects from ageing, or perhaps the increasing incidence of disease, or nutritional deficiencies, with age. Very low estimates for the age group 0-4 imply displacement or omission of disabilities. While not all types of disability equally affect various age groups or social groups, the reasons for their occurrence may be traced to human error or the prevalence of adverse conditions that perpetuate the occurrence of disabilities. For instance, the high prevalence of physical disabilities in rural areas could perhaps be traced to the non-availability or lack of accessibility to polio vaccine; also, the occurrence of birth defects could be caused and perpetuated by repeated close marriage i.e. of first cousins within a family over several generations, which is common in some areas. In the same context, the increased incidence of breast cancer among women living in areas with highly contaminated drinking water could also be cited. Job-related accidents happen everywhere, but when a high proportion of the physically disabled population is made up of accident victims, the situation is indicative of abnormally hazardous job conditions. Such conditions are avoidable and their elimination could reduce the incidence of certain forms of disability.
(per 1,000)
| Census 1981 | HED Survey 1973 | |
| Total | 4.53 | 20.78 |
| Age group | ||
| 0- 4 | 0.99 | 5.87 |
| 5- 9 | 2.33 | 3.39 |
| 10-14 | 2.80 | 13.73 |
| 15-19 | 3.16 | 8.69 |
| 20-24 | 3.72 | 25.93 |
| 25-29 | 4.26 | 10.72 |
| 30-34 | 4.59 | 23.53 |
| 35-39 | 4.14 | 10.91 |
| 40-44 | 4.49 | 23.09 |
| 45-49 | 4.25 | 12.70 |
| 50+54 | 6.03 | 45.21 |
| 55-59 | 7.62 | 24.50 |
| 60+ | 22.46 | 113.98 |
It is only in the 1981 census and the 1984-1985 survey that all households were asked questions on both mental and physical disabilities; tables 3 and 4 show the distribution of various disabilities in both periods. Similarities are evident in the percentages at all ages, except for blindness, as reported in the 1981 census. In an ideal situation, the percentage distribution of disabilities for various ages could be used with some caution as a time trend when consistent categories are absent for a number of censuses and surveys. In this regard, disability data for 1984-1985 do not show any erratic pattern, whereas in the 1981 census, the percentage blind for each age group fluctuates widely, with quite high percentages for the age group 20-24 years (table 3). The proportion of visually impaired persons appears consistent in both the 1981 census and the 1984-1985 survey among people aged 40 years and older, indicating that among older disabled people one-third of them are blind or experience sight-related problems. Among all persons with disabilities, about 16-17 per cent were reported to be "crippled" or "handicapped", with both the 1981 census and the 1984 survey consistently showing a much higher prevalence among younger than older persons (tables 3 and 4). Another consistent finding relates to the category "mentally retarded", which shows a peak at ages 15-19 years, implying a decline in the recent past. The data for persons with hearing and speech impairments show a steep decline after ages 20-24. Should it be concluded in observing these data that there has been a surge in the incidence of these disabilities in the recent past? A lower percentage (5.2 per cent) for the category mentally retarded at the youngest ages may depict omission or underreporting in the 1981 census (tables 3 and 4). The identification of persons categorized as "mentally retarded" and "handicapped" was important in the 1984-1985 survey. Although the category "insane" should also be retained in all such future data collection efforts, a better term should be used because it is not only the permanence of a disability which is of prime concern but also the existence and prevalence of comparable disabilities. It is the large differences in the various types of disabilities enumerated in the aforementioned census and survey which limit our understanding of the situation and make difficult programme planning for helping persons with disabilities.
| Age group | % | Blind | Deaf | Crippled | Mentally retarded | Insane | Other |
| Total | 100.0 | 29.4 | 13.0 | 17.6 | 10.2 | 6.5 | 23.3 |
| 0- 4 | 100.0 | 24.4 | 19.5 | 27.8 | 5.2 | 5.0 | 18.0 |
| 5- 9 | 100.0 | 6.7 | 30.3 | 28.6 | 11.4 | 5.4 | 17.7 |
| 10-14 | 100.0 | 7.6 | 30.3 | 25.5 | 17.7 | 9.6 | 14.7 |
| 15-19 | 100.0 | 17.5 | 24.9 | 25.5 | 17.2 | 11.5 | 12.6 |
| 20-24 | 100.0 | 36.2 | 18.3 | 23.0 | 14.8 | 7.3 | 11.4 |
| 25-29 | 100.0 | 38.1 | 13.1 | 17.2 | 13.6 | 7.8 | 9.3 |
| 30-34 | 100.0 | 34.6 | 13.0 | 18.0 | 12.5 | 9.5 | 12.7 |
| 35-39 | 100.0 | 33.0 | 11.9 | 19.3 | 15.5 | 7.6 | 12.7 |
| 40+ | 100.0 | 35.7 | 7.3 | 13.0 | 6.6 | 4.7 | 32.8 |
Table 4: Percentage distribution of types of disabilities by age group, 1984-1985 survey
| Age group | Total | Blind | Deaf | Mute | Deaf & mute | Leprosy | Mentally retarded | Handicapped | Lame | Others |
| 0-4 | 100.0 | 9.1 | 3.2 | 15.7 | 9.1 | 1.5 | 9.4 | 27.2 | 14.0 | 10.5 |
| 5- 9 | 100.0 | 7.7 | 5.1 | 14.9 | 7.6 | 0.4 | 14.0 | 22.6 | 18.0 | 9.7 |
| 10-14 | 100.0 | 5.4 | 4.2 | 13.2 | 8.8 | 0.7 | 17.8 | 24.0 | 22.0 | 13.7 |
| 15-19 | 100.0 | 9.2 | 2.0 | 10.5 | 7.6 | 0.3 | 20.0 | 19.1 | 21.2 | 10.1 |
| 20-24 | 100.0 | 11.2 | 1.6 | 11.7 | 4.7 | 0.6 | 21.0 | 17.9 | 20.7 | 10.5 |
| 25-29 | 100.0 | 14.9 | 3.4 | 9.0 | 5.9 | 0.7 | 16.1 | 16.3 | 19.5 | 13.9 |
| 30-34 | 100.0 | 14.3 | 1.2 | 7.7 | 6.3 | 1.2 | 19.4 | 13.3 | 17.7 | 18.9 |
| 35-39 | 100.0 | 14.0 | 1.9 | 5.2 | 2.6 | 0.6 | 14.7 | 16.6 | 26.1 | 18.5 |
| 40 + | 100.0 | 38.0 | 5.4 | 2.7 | 2.1 | 0.9 | 6.6 | 13.1 | 16.6 | 14.3 |
| Total | 100.0 | 22.5 | 4.2 | 7.5 | 4.7 | 0.8 | 12.4 | 15.9 | 18.7 | 13.4 |
The occurrence of various disabilities differs with regard to their timing and cause: for example, an individual could be physically impaired because of a recent disease or an accident, or because of a birth defect. Moreover, the nature of the disability could also vary in terms of its duration and the degree of dependency caused by it. Temporary visual impairment, psychological or physical disabilities may have a disease- or accident-based origin, but each of these types of disability may vary widely in terms of economic or physical dependency on others.
| Blind | Deaf & mute | Crippled | Mentally retarded | Insane | Other | Total | Disable as % of Total pop. | ||
| TOTAL | 29.4 | 12.99 | 17.61 | 10.25 | 6.41 | 23.34 | 100.0 | 0.45 | |
| MALE | 22.02 | 11.28 | 20.29 | 12.36 | 7.96 | 26.10 | 100.0 | 0.38 | |
| FEMALE | 35.34 | 14.37 | 15.46 | 8.55 | 5.17 | 21.12 | 100.0 | 0.53 | |
|
| |||||||||
| TOTAL | 27.15 | 13 | 17.68 | 15.25 | 7.45 | 19.48 | 100.0 | 0.33 | |
| MALE | 19.05 | 10.26 | 19.83 | 18.7 | 8.95 | 23.19 | 100.0 | 0.30 | |
| FEMALE | 34.96 | 15.63 | 15.59 | 11.92 | 6 | 15.9 | 100.0 | 0.36 | |
| TOTAL | 30.01 | 12.99 | 17.59 | 8.92 | 6.14 | 24.36 | 100.0 | 0.50 | |
| MALE | 22.91 | 11.58 | 20.43 | 10.46 | 7.66 | 26.96 | 100.0 | 0.42 | |
| FEMALE | 35.43 | 14.07 | 15.42 | 7.75 | 4.97 | 22.36 | 100.0 | 0.60 | |
Table 5 identifies six types of disability from the 1981 census. In broad terms, three reasons were considered in the 1984-1985 survey: disabilities from birth, those caused by disease and those caused by accidents (table 6). Problems related to commonalities between "at birth" and "disease" are clear. For instance, a disability reported as caused by a disease could actually be a birth defect or a disease-related deficiency such as weak maternal health, or inadequate immunity against childhood diseases. Similarly, visual impairment attributed to disease (72.4 per cent) could actually be a condition caused by the person's living environment or the conditions at his or her place of work. As for hearing impairments, about 60 per cent of respondents reported deafness as the main reason for their being disabled. By contrast, about 90 per cent of those with hearing and speech impairments reported the existence of their disability since birth. More than half of all those enumerated as mentally retarded were reported to have had the disability since birth; however, for more than one-third of the cases, disease was reported as the cause. The identification of a number of disabilities since birth would be indicative of much more complex pathways, which may include maternal health issues over and above other possible causes such as genetic disorders. In general, disease is attributed as the cause of disabilities acquired during youth or at older ages. According to table 6, accidents are not reported as a major factor in causing most disabilities except for those persons unable to walk or who suffer from any paralysis. While such findings should be of serious concern to programme planners, it should be kept in mind that reasons for commonalties or ambiguities may reflect a respondent's bias or the invalid recording of data about persons with disabilities that had not been verified by professional staff.
| Reason of disability | Blind | Deaf | Mute | Deaf & mute | Leprosy | Mentally retarded | Handicapped | Lame | Others | |
| By birth | 17.8 | 34.9 | 91.2 | 88.6 | 28.9 | 53.1 | 28.0 | 25.9 | 19.7 | |
| By accident | 6.7 | 3.4 | 0.9 | 11.8 | 5.7 | 14.4 | 29.3 | 26.5 | 26.5 | |
| By disease | 72.4 | 59.4 | 7.7 | 11.0 | 59.2 | 38.9 | 56.5 | 44.2 | 51.2 | |
| Others | 3.0 | 2.4 | - | 0.43 | - | 2.3 | 1.1 | 0.71 | 2.5 | |
| Total | 100.0 | 100.0 | 100.0 | 100.0 | 100.0 | 100.0 | 100.0 | 100.0 | 100.0 | |
Differentials by sex and place of residence
One way of examining the validity of such results is by observing the sex ratio of persons with disabilities. At the aggregate level, the sex ratio of persons with disabilities exhibits no specific pattern. In a hostile political and hazardous work environment, males are normally subject to greater risk of injury and disability due to accidents than are females. The low sex ratio for persons with disabilities as recorded in the 1981 census would imply a higher incidence of disability among females, which if the data are valid cannot be explained easily here. Is it the way the questions were asked, or has some coding error given rise to a large number of females being recorded as disabled? In comparing the sex ratios from the 1984-1985 survey and the 1973 HED survey, we find the ratios to be similar, but the data do not engender confidence in the 1973 survey because of the very high proportion of the population recorded as disabled. What is the correct sex ratio of persons with disabilities in Pakistan? The answer remains a mystery, even though it is essential for planners and programme managers to know in order to establish appropriate rehabilitation and skill development programmes for the portion of the total population suffering from disabilities.
For a fuller understanding of disability where data are unreliable, differentials by sex and place of residence may be taken as indicators for future policy and programme development. A high rate of disability for one sex or a specific location in the country could be related to the practices surrounding prenatal care, circumstances at the time of delivery, dietary or nutritional problems, level of industrialization or even the geo-political situation of an area. For instance, one should expect a much higher incidence of disability among men during and after military hostilities, whereas a famine or the outbreak of disease would be more likely to adversely affect infants and women. Even for normal times, the 1981 census indicates that the number of persons with disabilities as a percentage of the total population (0.45 per cent) is substantial, especially with regard to women in both urban and rural areas (table 6). In the 1981 census, females were reported to have a much higher incidence of disability than males, and this situation was reported as being more prominent among rural than urban residents. For instance, many more women than men were reported as blind in the 1981 census both in urban and rural areas. Males were reported to have marginally more disabilities such as mental retardation or incapacitation in both urban and rural areas compared with women. A higher proportion of males was found among those who were physically disabled, which could be expected because of the greater exposure of men to a hazardous work environment and participation in violent activities. Similarly, the prevalence of "insanity" would seem to be higher among males than females, according to the 1981 census data. More research obviously needs to be undertaken to identify the reasons for the differentials. Is the prominence of mental retardation among males related to genetic reasons that are known to add to the neonatal mortality of males? Is the prominence of visual, hearing and speech impairments among females rooted in behaviourial differentiation towards females in Pakistan? What action has been taken to remove hazards to working men and women so that they will not be disabled for life.
In contrast with the 1981 census data, data from the 1984-1985 survey exhibit higher sex ratios for all disabilities for certain provinces and the country as a whole (table 7). In examining the data one could justifiably ask if the 1984-1985 survey is a presentation of socially expected data rooted in both the respondents' and interviewers' biases? Is greater exposure to a hazardous environment the main factor in shaping these patterns for males or are genetic differentials really involved? The ratios swing to the other extreme when we examine the sex ratios for Balochistan where the categories for hearing and speech impairments exhibit very low values. The concealment of information regarding females, especially about their disabilities, is quite obvious in Balochistan which is the least developed part of the country. Even if definitional and coverage differences are ignored, the divergence of disability-specific sex ratios between the 1981 census and the 1984-1985 survey is inexplicable and confusing. The high percentage of males being reported as "mentally retarded", "handicapped" and "lame" in the 1981 census could be because of the underreporting of incidence among females, or serious genetic disorders causing mental and physical disabilities among males. What could explain the high incidence of blindness among females reported in the 1981 census? The absence of a similar pattern in the 1984-1985 survey creates serious doubts about the reliability of the various data. If a higher female disability rate, particularly for blindness, is assumed to be true (as indicated by the 1981 census) as well as high male mental retardation rates (as indicated by the 1984-1985 survey), what investigations have been carried out to determine the reasons for the extremes recorded? There are several possibilities. One reason for a high rate of female blindness may be related to women's social roles within the family which could foster the postponement of treatment in order to deal with other matters considered more important. In addition, a woman's inability to go to a clinic alone to seek medical care could aggravate such a situation.
Disability
Pakistan
Punjab
Sindh
NWFP
Baluchistan Total
2.05
2.18
1.74
1.88
2.92 Blind
1.37
1.47
1.07
1.26
2.92 Deaf
2.22
1.97
2.11
3.64
2.43 Mute
1.45
1.84
1.22
1.38
0.49 Deaf/mute
2.33
2.70
2.02
1.33
0.20 Mentally
retarded
2.58
2.17
3.69
2.27
12.3 Handicapped
1.86
2.15
1.19
1.53
5.04 Lame
3.19
3.17
3.2
2.77
4.64
Note: NWFP = North Western Frontier Province.
Disability dependency ratio
Another important dimension about the population of persons with disabilities is their dependence on the economically active population. An index of disability would indicate the gravity of the increasing level of dependency, especially when the population growth rate is quite high: currently 3.0 per cent per year (ESCAP, 1994b); the Government's estimate is 2.9 per cent per year. The importance of this ratio for our study lies in the life-time dependency of persons with disabilities rather than for a relatively short period before children become economically active or before the elderly die. If disability dependency is defined as the ratio of persons with disabilities to the entire labour force, then in 1981 for every 1,000 persons working there were about 17 persons with disabilities who were dependent on others for support. This ratio is high, especially since the population below 15 years of age is quite large and is assumed to be dependent on the working-age population. The ratio is a little low for urban areas, with 14 persons with disabilities per 1,000 working-age population. This lower ratio for urban areas is due to both a lower level of reported disabilities and a higher percentage of the urban population being employed. In addition to these aspects, limited opportunities exist for rehabilitation and economic participation of the large majority of the population with disabilities. Another matter relating to such data is the fact that the dependency ratio is subject to variations in line with changes in definition and the reference period of the disability. In view of all these aspects, it is obvious that there are numerous problems related to the data available on the population with disabilities. The following section, therefore, suggests ways to improve data on disabilities in Pakistan.
Even though underreporting and misreporting of persons with disabilities is obvious from our analysis, the overall trend during the last three decades exhibited by the absolute number of this portion of the total population would indicate that the proportion of the population with disabilities is probably growing rapidly in Pakistan. Despite the data difficulties, observing the prevalence of disabilities recorded in the censuses of 1961 and 1981 would lead one to expect a much higher incidence of disability concealed by both poor data collection and the cultural imperative to avoid talking about such matters especially with strangers. If the data are valid, the doubling of the population with disabilities between 1961 and 1981 would be an alarming occurrence, demanding that adequate measures be undertaken to reduce the growth rate of this proportion of the total population.
If the absolute data are assumed to be correct, then one could easily estimate that, by the mid-1990s, about 1 million persons with disabilities would be living in Pakistan, and that more than half of them would be 40 or more years of age. The expansion of this portion of the total population would hold serious economic and social implications for Pakistan. It would mean that about a million households in Pakistan would have at least one member with a disability, with households in rural areas more likely to be affected than those in urban areas. In view of this number, at least another million able-bodied persons of the same household would also be occupied full-time in caring for the member(s) with a disability, which means that opportunities for income-generation by those persons engaged in the care of the disabled are lost. The same million households would also have extra economic pressures put on them as they would have to allocate additional resources to cater for the needs of those persons with disabilities, including medical treatment for them and the provision of all their daily needs.
Under this scenario and in view of the general level of poverty that characterizes a sizeable proportion of Pakistan's population, a relatively high percentage of these one million households could be expected to be severely burdened economically, especially if they already have a high number of dependents both at younger and older ages.
Females were reported to have a higher risk of disability than males (table 5) and more so in rural compared with urban areas. This high risk is attributed to the high prevalence among Pakistani females of disabilities such as visual, hearing and speech impairments; by contrast, more males than females would seem to have intellectual and physical disabilities. On a national scale, depending on the validity of the data, more rural than urban residents would seem to have disabilities. In relative proportions, more urban than rural households reported the presence of intellectually disabled persons, indicating that there may be some degree of concentration in urban areas and implying that special programmes should be developed to alleviate such problems.
One may conclude from this analysis that it would not be impossible to exercise some control over the possibly increasing rate of various disabilities, the major portion of which would seem to be caused by preventable accidents or curable diseases. Therefore, better research into the various causes of disability would help in addressing this issue and enhancing the quality of life of people with disabilities, which is one of the main aims of the aforementioned Decade.
If the prevalence and incidence of disabilities in Pakistan are considered as indicators of the quality of life in that country, the likely increasing magnitude of disabilities would hold many long-term implications for the Government and all organizations concerned. The following activities are recommended, therefore, for improving the situation in the future.
1. Awareness and education: Education of high risk groups is highly recommended to make them aware of behaviourial causes leading to the increased risk of disability. Similarly, increased awareness of good physical and psychological hygiene and a demand for specific types of health care could help men, women and children to reduce their risk of both psychological and physical disorders. Furthermore, literature about disabilities should be identified for the use of people with disabilities, their families, specialists and the general public to increase their awareness of disabilities and the measures that can be taken to improve the quality of life for the people concerned.
2. Increased availability and accessibility: Increased accessibility to medical care through the use of mobile units could provide much needed relief to disabled people in rural areas, especially mobile eye clinics for females with visual impairments. Similarly, better antenatal and postnatal care for children and improved access to polio vaccination would help to reduce the risk of contracting an easily preventable disabling disease.
3. Social recognition and rehabilitation: In order to engender greater acceptability for and better assimilation of psychologically and physically disabled people in society, the Government should initiate special education courses and provide opportunities for such persons to gain acceptance in society. In this regard, social organizations should be encouraged to assist persons with disabilities with regard to their physical needs, and where possible, provide job opportunities through employment bureaus in order to help them live a more independent life.
4. Research and methodologies: Unfortunately, disability is one of the areas that seems least attractive to researchers in Pakistan. No concrete research study exists that utilizes either census or survey data to examine the patterns, levels, or determinants of disabilities in this country. Yet there is a dire need for in-depth analysis of data on persons with disabilities, using survey data at the district level to identify the concentration, differentials by geographic region, social characteristics, reasons for the disabilities, prevalence rates by social status, efforts at rehabilitation, and potential for involvement of persons with disabilities in social and economic activities. There is also an urgent need to illuminate the causes of disability so as to assist the Government in organizing rehabilitation programmes and forestalling possible reasons for the emergence of various new types of disability, such as those usually identified with growing urbanization: violence and drug abuse, for example.
This study has tried to identify a number of lacunae in the data on the population of persons with disabilities in Pakistan. The main problems associated with various data sets relate to definitional changes, reference periods, categories included, importance given to data on persons with disabilities during the training of interviewers for the actual collection of data, the supervision of personnel and monitoring of the process with quality checks. This study further identified areas requiring special attention from the trainers of future census-takers, especially with regard to the verification of the population with disabilities. Owing to the complexity of the respondents' potential biases, interviewers' fatigue and inadequate training, data quality has been adversely affected. Therefore, special surveys on disabilities should be conducted at all district levels in order to obtain valid and reliable data. Such in-depth data would provide district administrators with hard facts on which to plan more precisely for the rehabilitation of disabled persons according to their needs.
Another aspect that requires immediate attention is obtaining data on the duration and real causes of various disabilities in Pakistan. The need for a flexible method for collecting such data is especially important with regard to disabilities that anectodally seem to be increasing, such as depression and various kinds of psychological illness. Since several studies of malnutrition and diarrhoea as major causes of disability have been undertaken, it may be asked what has been done to prevent these problems? If congenital problems are thought to be a major source of disability, are the data adequate and has in-depth analysis been undertaken to examine this hypothesis? In summary, it is obvious that much more effort must be devoted to the collection of valid and reliable data on the population of persons with disabilities. This has been a neglected issue, but ignoring it may inhibit the future development of a "quality population" in Pakistan.
Changing social conditions in Pakistan, including an increase in the number of nuclear families, rapid urbanization, the vulnerability of certain social groups, especially the poor, women and children, and increased environmental hazards, all make it necessary that increased threats to human health and life be recognized and properly recorded so that patterns will be identifiable and so that measures can be taken to prevent disabilities on one hand and rehabilitate persons with disabilities on the other hand. The need is all the more pressing because of the transitional state of Pakistan's society, which includes a break- down in some areas of the traditional extended family system with its support structures, and the consequently greater likelihood in the future of dependence of those with disabilities on state agencies for the provision of care and rehabilitative services. Current social welfare programmes, in general, seem to be ad hoc in nature and do not address the human aspects of the disabled population. With the rapidly growing population pressure on urban settlements and the alienation of the family support system, the disabled population could be neglected in the future. Therefore, good data are required on a regular basis to examine the patterns and the causes of disabilities. Given the complexity of the types of disabilities, the following measures are suggested for the government agencies collecting data on persons with disabilities.
- One item that is missing in all sources of data is the duration of disabilities. Time-references for each disability should be include in all such data collection efforts in order to differentiate between permanent disabilities and those resulting from illness which could be for a short duration. Such differentiation is important in order to cover various psychological and physical disorders that are emerging, especially in urban settings. The need to provide a time-reference is based on the differentiation between rehabilitation and treatment programmes for such disorders. Such information would also assist researchers and programme managers to determine the likelihood of various types of disability occurring and to observe how disabilities that were initially perceived as temporary later became permanent. Further, knowledge of the duration of disabilities would further help planners in assessing the dependency ratios in society and in developing rehabilitation programmes.
- The classification of disabilities in the 1984-1985 survey is among the better ones, but added attention still needs to be given to the nature of physical and psychological disorders.
- An important but neglected issue is the recurrence or repeated prevalence of certain disabilities in a single household, especially congenital disabilities or those acquired during infancy or early childhood. Such information would help in identifying high-risk or disability-prone families needing special attention and care. In-depth analysis of households at risk would help the Government to identify the root causes of recurring disabilities, and thus enable it to take measures to prevent them.
- There is a need for establishing good benchmark data and updating them by undertaking detailed confirmatory surveys. The population census of Pakistan that was scheduled for October 1994 has been postponed. Because the delay is expected to overshadow the importance of the data needed to assess the population of persons with disabilities, a representative sampling of households should be collected immediately. For monitoring purposes, census data would ordinarily be a good source for examining the level, types and duration of disabilities. Unfortunately, previous censuses have given only very casual attention to the collection of data on disabilities. Therefore, all future population censuses should make serious efforts to collect data on consistent disability categories, as highlighted in the 1984-1985 survey. Important in this regard is the language and wording used for determining the real situation concerning people with disabilities, the quality of training of interviewers, their salary and incentives, verification of cases by supervisors and data coding and editing, all of which would do much in improving the validity of such data. Verification of cases of disability to establish their validity is recommended at the district level, with specialized social workers trained to verify and examine the degree, severity and complexity of the disorder, as well as to gather information regarding treatment, attitudes towards persons with disabilities, their social needs, and the social status of persons with disabilities. Such an elaborate exercise would not only provide reliable data but also identify the unmet needs of persons with disabilities at the district level. It should be emphasized that the training of district teams is crucial in the light of similar research efforts that identify various aspects of disabilities that respondents usually overlook, hide or underreport.
To provide less than these minimal improvements would be tantamount to rejecting the United Nations Charter's affirmation of faith "... in the dignity and worth of the human person....."
1. The words "impairment", "disability", and "handicap" are sometimes used interchangeably. The distinction between "disability" and "handicap" has become a major philosophical point for the disability movement which focuses on breaking barriers, both physical and attitudinal, to the participation of disabled people in society. Disabled Peoples' International (DPI)-Australia defines disability as follows: "Disability is a functional limitation within the individual caused by physical, intellectual, emotional, or sensory impairments". The World Programme of Action concerning Disabled Persons defines handicap as follows: "Handicap is ... a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others". Other terms relating to people with disabilities are ideally put in a positive way: the hearing impaired (instead of deaf), visually impaired (for blind), intellectually disabled (for mentally retarded) etc. While the author would like to have used such terms, it was not possible because of the need to use wording similar to that of the various data sources to which he refers.
Directorate General of Special Education (DGSE) (1986). Census of Disabled Population (Islamabad: Government of Pakistan).
ESCAP (1994a). Asian and Pacific Decade of Disabled Persons, 1993-2002: Mandates for Action (Bangkok: Economic and Social Commission for Asia and the Pacific).
__________ (1994b). 1994 ESCAP Population Data Sheet (Bangkok: Economic and Social Commission for Asia and the Pacific.
Federal Bureau of Statistics (FBS) (1986). Survey of Disabled Persons 1984-1985 (Karachi: Statistics Division, Government of Pakistan).
Population Census Organization (PCO) (1984). 1981 Census of Pakistan (Islamabad: Statistics Division, Government of Pakistan).
Census Organization (CO) (undated). Housing, Economic and Demographic Survey, 1973 (Islamabad: Interior Division, Government of Pakistan)
Home Affairs Division (HAD) (1964). Census of Pakistan: Population 1961 (Karachi, Ministry of Home and Kashmiri Affairs, Government of Pakistan).
For further information on this material please contact: loftus.unescap@un.org