Chapter 12:
Disability
1. What is it?
508. The International Classification of Functioning, Disability and Health (ICF) (WHO, 2001) defines disability “as an umbrella term for impairments, activity limitations or participation restrictions” and embraces at least three dimensions: body, individual and society.
509. The Convention on the Rights of Persons with Disabilities (CRPD) states, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (United Nations 2006). The Principles and Recommendations for Population and Housing Censuses, Rev. 2 (Par. 2.376) (United Nations, 2008 a) recognize that disability is a complex concept and recommends that countries adopt an explicit definition based on the ICF when developing census or survey questions that will be used to identify disability status and level of functioning.
a. Persons with disabilities are defined as “those persons who are at greater risk than the general population for experiencing restrictions in performing specific tasks or participating in role activities” per the Principles and Recommendations (Par. 2.351).
b. Human functioning refers to the dynamic interaction across personal factors, health conditions and environmental factors.
2. Why is it important?
510. Persons with disabilities are protected by the Convention on the Rights of Persons with Disabilities (2006). Other programmes and standards in place to protect persons with disabilities include the World Programme of Action Concerning Disabled Persons (1982) and the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993).
511. The World Report on Disability (WHO/World Bank, 2011) suggests (using 2010 global population estimates) that over one billion people in the world, or about 1 in 7 persons, experience disability today. This estimate of 15 per cent of the persons living with disabilities is higher than prior World Health Organisation estimates, which were about 10 per cent (WHO/UNFPA, 2009). Further, disability prevalence is higher among already vulnerable populations, specifically those within low income countries, those in the lowest quintile of income within a country, older persons and women. Older women living in low-income countries, therefore, are especially vulnerable to disability.
512. Article 31 of the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006 b) addresses issues relating to statistics and data collection on persons with disabilities. States Parties are obligated to collect and disaggregate data, while also ensuring confidentiality and protecting human rights and ethical principles, in order to inform and implement policies within the Convention’s scope as well as monitor and assess progress toward its full implementation.
513. As stated in the Principles and Recommendations, Par. 2.350, census data on disability “can be utilized for general planning programmes and services (prevention and rehabilitation), monitoring selected aspects of disability trends in the country, evaluation of national programmes and services concerning the equalization of opportunities, and for international comparison of selected aspects of disability prevalence in countries”. In addition, census data on disability can be used to identify households for a more comprehensive survey of persons with disabilities.
514. To understand the experience of disability, it is crucial to consider the interaction between disability and gender; women and men, boys and girls generally face specific disability experiences and may require particular social support services and policies. Although not always made explicit, policies towards people with disabilities are not gender-neutral: in practice, gender inequalities often combine with disadvantages experienced by disabled women to create particular forms of exclusion and multiple discrimination. In several social contexts, compared to their disabled male peers or non-disabled female peers, women with disabilities are less educated, poorer, more isolated, more likely to be unemployed, and more likely to be abused, as well as having lower health outcomes and lower social status (Stubbs and Tawake, 2009). Disadvantages are, therefore, due to a combination of gender, disability, other horizontal inequalities, such as migratory status and ethnicity, as they intersect with social class and economic status.
515. Regarding education, international human rights instruments, such as the Convention on the Rights of Persons with Disabilities, emphasize that persons with disabilities should be guaranteed the right to equitable educational experiences at all levels, including lifelong learning. It is therefore crucial to monitor educational attainment of persons with and without disabilities and by sex.
516. Some crucial topics on gender and disability that can be examined using census data are addressed in international instruments are listed below.
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Education. Access to appropriate education and skills-training for women and girls with disabilities is stressed by the Beijing Platform for Action. Strategic objective B.2, to eradicate illiteracy among women, stresses that governments should take actions to reduce the female illiteracy rate, with particular emphasis on women with disabilities.
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Work. The Convention on the Rights of Persons with Disabilities addresses the urge for the recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market. Strategic objective F.5 of the Beijing Platform for Action, to “eliminate occupational segregation and all forms of employment discrimination,” also emphasizes the importance of implementing and monitoring positive public and private-sector employment, equity and positive action programmes to address systemic discrimination against women in the labour force, in particular women with disabilities, with respect to hiring, retention and promotion, and vocational training of women in all sectors.
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Poverty. The Beijing Platform for Action recognizes that women with disabilities are among the most economically disadvantaged groups and states that more effective anti-poverty programmes directed towards them are a need.
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Health. The Beijing Platform for Action calls for governments to ensure that girls and women of all ages with any form of disability receive supportive health services.
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Ageing. The Beijing Platform for Action recognizes that, with the increase in life expectancy and the growing numbers of older women, their health concerns require particular attention. The incidence of impairment and disability increases with age. Older women are particularly vulnerable to disability in old age due to gender differences in life expectancy and gender inequalities over the life course.
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Care. The ICPD Programme of Action declares that governments should support and develop the appropriate mechanisms to assist families caring for children, the dependent elderly and family members with disabilities.
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Marriage and family formation. ICPD recognizes the reproductive rights for women and men with disabilities and their right to household and family formation. The document further stresses that adequate assistance must be provided to persons with disabilities in the exercise of their family and reproductive rights and responsibilities.
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Violence. The Beijing Platform for Action recognizes that women with disabilities are among those women particularly vulnerable to violence. The Convention on the Rights of Persons with Disabilities further declares that national governments should take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects.
517. As stated in the Principles and Recommendations, access to paid work is crucial to achieving self-reliance and ensuring the well-being of the adult population, both of persons with disabilities as well as of those without disabilities. While women, in general, face discrimination related to work opportunities and income gaps, women with disabilities may face a double disadvantaged position on the labour market. Men with disabilities also tend to be economically disadvantaged, compared to their non-disabled peers. Despite such economic disadvantages, there are also additional costs of living connected with a disability, such as medical treatments, transportation costs, and support services. As such, people with a disability are more likely to be at risk of deprivation and poverty than other people.
518. The Convention on the Rights of Persons with Disabilities emphasises the need to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships. While disability may stigmatize both men and women, social constructions of femininity and masculinity may lead to specific discrimination outcomes. Women with disabilities may be more vulnerable to social isolation, to sexuality repression, and to denials of family formation. According to UNESCAP, “universally, the incidence of marriage for disabled women is lower than that for disabled men.” For instance, in Nepal, where marriage is a social norm for women, 80 per cent of women with disabilities reported to be unmarried (Paudel, 1995). Another analysis on the 2008 Tanzania Disability Survey showed that 54.8 per cent of persons with disabilities were in marital union, with more males being involved in a relationship (62.5 per cent) than females (47.4 per cent) (Tanzania National Bureau of Statistics, 2010). However, one should be cautious about these conclusions as there is a serious selection bias operating. Because women (disabled or not) live longer than men, more women than men are outside a relationship, as they have lost their partner at an earlier stage in life. Another issue of concern, which has increasingly been discussed, is forced marriages among people with learning disabilities or those who lack the capacity to consent to a marriage (Clawson, 2010).
519. The World’s Women 2010 (United Nations, 2010 a) notes that actively caring for disabled household members tends to be a time-consuming task primarily undertaken by women, especially in less developed countries with few public services for such care. For example, census data from the 2000 United States Census found a consistent pattern of living arrangements that leaves children with disabilities disproportionately under the roofs of their mothers or other women (Cohen and Petrescu-Prahova, 2006). Children with disabilities are more likely to live with single parents, and especially their mothers, than other children. Further, those who do not live with either parent are more likely to live in households headed by women than other children. The authors argue that gendered living arrangements among children with disabilities are a neglected aspect of gender inequality in caring labour.
520. Women in poorer communities, particularly those in developing countries, may be more vulnerable than men to disability. In Fiji, there is a higher incidence of disability among females than among males; girls comprise 72 per cent of children with disabilities in the 0-5 year old age range and females comprise 56 per cent of persons with disabilities in the 6-20 year old age range (Perry, 2002). Another example of interrelated relationships to be disentangled with a gender lens comes from research in Somoa by Stubbs and Tawake (2009). Women with disabilities differ from disabled men and non-disabled women in that they are less educated, poorer, and of lower health and social status. Being disabled and a woman bear a disadvantage that is horizontal in nature that results in lowered health and social status. CAREFUL HERE: THIS IS NOT A UNIVERSAL PHENOMENON. IN ETHIOPIA, FOR EXAMPLE, THE RELATION IS REVERSED, BUT THE ETHIOPIAN CENSUS DATA MAY NOT BE REPRESENTATIVE BECAUSE OF THEIR OVER-ALL LOW INCIDENCE.
521. Ageing processes in men and women with disabilities men may lead to secondary disabilities. Women live longer than men, and they are more likely to experience disability and severe disability, which is highest among the oldest old (WHO/World Bank, 2011). The Convention on the Rights of Persons with Disabilities stresses the right of older women and men with disabilities to be assisted by adequate social protection programmes, which must be age-, gender- and disability-sensitive.
3. Data issues
522. The Principles and Recommendations (Par 2.351) indicate that four domains are essential in determining a person’s disability status: (a) Walking; (b) Seeing; (c) Hearing and
(d) Cognition. Two other functions (self-care and communications) are suggested to be included in census questionnaires. In 2001, the Washington Group on Disability Statistics was formed was set up after the United Nations International Seminar on Measurement of Disability (New York, June 2001) to facilitate international comparison of disability data . The Washington Group29 suggests the following short set of questions to be incorporated in national censuses:
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Do you have difficulty seeing, even if wearing glasses?
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Do you have difficulty hearing, even if using a hearing aid?
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Do you have difficulty walking or climbing steps?
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Do you have difficulty remembering or concentrating?
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Do you have difficulty (with self-care such as) washing all over or dressing?
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Using your usual (customary) language, do you have difficulty communicating, (for example understanding or being understood by others)?
523. These questions, or some variations thereof, were included by a number of countries in their most recent census questionnaire. According to the report of the Washington Group to the Statistical Commission (Forty-third session, 28 February-2 March 2012) 31 countries indicated they had used the short set of questions, or at least an adaptation of it. Some countries used a set of 4 essential questions and others the more extended set of 6 questions. Many other countries used a large variety of questions related to disability. Some examples:
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In the 2011 Australian Census the following question was included: ‘Does the person ever need someone to help with, or be with them for, self care activities?' Similar questions were asked for body movement and communication activities.
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In Botswana (2011) this question was asked ‘Does any listed person in A1 and B1 have any of the following disabilities?’ The interviewer could then choose from a list of 17 types of disability. Similarly, in Barbados (2011), the interviewer could choose from a list of 20 disabilities, including “Other”
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In Cambodia (2008) the enumerator was given the following instruction: ‘If the person is physically/mentally disabled give appropriate code number from the list below. Otherwise enter dash (-)’.
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The enumerators in the 2006 Egypt were instructed to note down the identifiction number of the ‘handicapped’ person. Then they had to inquire about the type of disability (11 categories) and the reason of disability.
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Some countries also allow the respondent to indicate degrees of disability. The 2011 census of Albania, for example, contained four categories, from no disability at all to severe impairment.
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Some African countries ask whether the respondent is an albino, which is considered to be a disability.
524. There is no doubt that the wording and contents of questions on disability affect the answer of a person and ultimately changes the overall results. Because of the wide variety of questions on disability in population censuses, comparing the prevalence levels of disability between countries using different questions should be addressed with extreme caution. One can expect that in the future, when more and more countries adapt the principles set out by the Washington Group, this will improve. But even among countries, that are using the Washington Groups’s recommendations some discrepancies may exist. One can expect that a difference exists between the prevalence of disability among those countries that use the short set of 4 questions and the group that use the full set of 6 questions. There should also be differences between countries that only admit yes/no answers and those that allow respondents to indicate degrees of disability.
525. One weakness with census data is that only a limited number of questions can be devoted to a single topic, making it difficult to gain specific information on the gaps in health between women and men. Since only a limited number of disability domains are measured, “a comprehensive picture of disability can only come from large, national, sample surveys or administrative data” (Washington Group on Disability Statistics, 2006). However, despite this and other weaknesses of census data for the analysis of gender issues related to disability, there are also some clear benefits.
526. First, disability data in censuses can be used to monitor the prevalence of limitations in each disability domain (Washington Group on Disability Statistics, 2006). Those censuses that ask the relevant questions can provide the absolute number of persons with disabilities that are otherwise difficult to find, such as the number of blind persons in a country and those who are deaf or mentally impaired (United Nations, 2001). Moreover, for many countries, the census is the only source of information on disability at the national, regional and local levels Additionally, as the Principles and Recommendations (Par. 3.78) state correctly, census data help to monitor equalization of opportunities, measuring the social and living conditions of persons with disabilities in terms of school attendance, educational attainment, employment, marital status and living arrangements, among others.
527. Following international measures of disability, such as the International Classification of Functioning, Disability and Health (ICF), allows the systematic and comprehensive identification of persons with disabilities in the population, and allows for the ready categorization of these disabilities into types and different levels of limited functioning regarding basic activities regardless of nationality, culture or economic resources (Washington Group on Disability Statistics, 2006). Further, in addition to identifying households for a more comprehensive survey of persons with disabilities, collecting the short set of questions in the census also informs and provides a frame for future surveys on disability.
528. A potential problem of census data is non-response, which results from the complexity and sensitivity of questions related to disability status (United Nations, 2001). As an example, the person replying to the census questionnaire may not report information about a disabled relative because of shame or stigma. Another cause of non-response is that women and men with disabilities residing in institutions may not be included in the census population or at least not in descriptive tabulations because often only non-institutionalized populations are covered (United Nations, 2001).
4. Tabulations
529. The Principles and Recommendations stress that a census can provide valuable information on disability and human functioning in a country (Par. 8.2.350) and the need to develop statistics on the situation of persons with disabilities in order to assess equalization of opportunities (Par. 3.109). For this purpose, the principal topics in census recommendations should include items such as a) sex, b) age, c) place of residence, d) type of household, e) marital status, f) educational attainment and school attendance, g) activity status, h) status of employment, i) industry and j) occupation. Data permitting, tables can be constructed by disability status as well as by specific types of disability. As an example, examining the participation in education for people with and without disability is especially valuable if the analyst compares among different types of disability within the school-age population.
530. The tabulation plan for disability data should include not only the prevalence rates by sex and age, but also comparisons between persons with and without disabilities on these key social and economic characteristics, as well as the type of disability. The Principles and Recommendations recommend the following basic tabulations on disability characteristics:
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P8.1-R Population with and without disabilities by urban/rural area, age and sex*
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P 8.2-R Population 5 years of age and over, by disability status, educational attainment, age and sex
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P 8.3-R Population 15 years and over, by disability status, economic activity status, age and sex
531. Additional tabulations on disability characteristics suggested by the Principles and Recommendations are:
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P8.1-R Population with and without disabilities by urban/rural area, age and sex*
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P 8.2-R Population 5 years of age and over, by disability status, educational attainment, age and sex
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P 8.3-R Population 15 years and over, by disability status, economic activity status, age and sex
532. The following table from the 2006 census of Ireland provides very detailed information on the prevalence of disabilities by age, sex and type:
Table 38: Ireland (2006) – Prevalence (in percentages) of detailed disability categories by age and sex
Type of Disability
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Men
|
Women
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<15
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15-24
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25-44
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45-64
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65+
|
<15
|
15-24
|
25-44
|
45-64
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65+
|
Blindness, deafness / severe vision hearing impairment
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0.5
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0.6
|
0.9
|
2.3
|
8.1
|
0.5
|
0.6
|
0.8
|
1.7
|
8.8
|
Substantial limitation of some basic physical activities
|
0.6
|
0.7
|
1.5
|
5.6
|
16.6
|
0.5
|
0.7
|
1.7
|
5.7
|
23.0
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Difficulty learning, remembering, concentrating
|
3.2
|
2.8
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1.7
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2.5
|
6.1
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1.6
|
1.7
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1.5
|
2.2
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8.5
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Difficulty dressing, bathing, getting around in the home
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0.8
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0.5
|
0.6
|
1.6
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7.7
|
0.5
|
0.4
|
0.7
|
2.0
|
14.0
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Difficulty going outside the home alone
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0.9
|
0.8
|
0.9
|
2.0
|
10.7
|
0.6
|
0.7
|
1.1
|
2.6
|
18.7
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Difficulty in working or attending school/college
|
0.9
|
1.4
|
2.1
|
5.6
|
8.9
|
0.5
|
1.1
|
2.2
|
4.9
|
11.8
|
Learning or intellectual disability
|
3.1
|
2.8
|
1.4
|
1.4
|
1.7
|
1.5
|
1.6
|
1.0
|
1.1
|
2.0
|
Psychological or emotional condition
|
0.6
|
0.8
|
1.4
|
2.2
|
2.6
|
0.2
|
0.8
|
1.7
|
2.3
|
3.6
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Difficulty in participating in other activities
|
1.1
|
1.1
|
1.5
|
3.6
|
10.8
|
0.7
|
1.0
|
1.7
|
3.9
|
16.3
|
Other, including chronic illness
|
1.1
|
1.1
|
1.8
|
4.9
|
9.7
|
0.9
|
1.2
|
2.1
|
4.7
|
10.8
|
Source: Population and Housing Census of Ireland (2007), Report 11
Slightly over half of the percentages in Table 38 are higher for men than for women. The major exception, however, is the 65+ age group, where all disability rates for women are higher than for men. Because this age category has such a large weight in the overall disability rate, the latter is higher for women in all disability categories, with the exception of learning and intellectual disabilities.
533. Tabulations on the distribution of the prevalence of disability by age and sex in the population should also consider geographical division, urban/rural residence and the living arrangements of persons with disabilities. If data are available, tabulations should also disaggregate by income level or poverty status, as well as by recent migrant status.
534. Tabulations on household composition provide useful information for determining the economic and social provisions that may be needed for persons with disabilities living alone or with relatives. For this, information on the size of households and the distinction among the one-person household, the nuclear family household and the extended family household are essential. Another crucial point is the provision of tabulations for calculating prevalence of disability per household (number of households with at least one person with disability per 1,000 households). In addition, the marital status of persons with disabilities can serve as a measure of their social integration, especially if this calculation is compared to persons without disabilities within the population.
535. Besides the basic tabulations on disability suggested in the Principles and Recommendations (see 4.1 - 4.3), this manual also suggests a set of other tables based on UN guidelines.
a) Education
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School attendance and educational attainment, by sex and age group.
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Net enrolment rate in primary education, by sex, age group and disability status (Beijing indicator).
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Net enrolment rate in secondary education, sex, age group and disability status (Beijing indicator).
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Gender parity index in 1, 2 and 3 levels of education, by sex, age group and disability status (Beijing indicator).
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Literacy rate for 15-24 years of age by sex, further disaggregated by disability status (Beijing indicator).
b) Income generation
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Labour force participation rates for 15-24 years of age, by sex and disability status (derived from Beijing indicator).
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Labour force participation rates for 15 and older (in five-year age groups), by sex and disability status (derived from Beijing indicator).
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Average total income for adults with disabilities, by sex and age group.
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Disability status as a predictor or explanatory variable in a regression analysis predicting what is associated with poverty or lower income status.
c) Marriage and family formation
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Total population 15 years of age and over, by disability status, marital status, number of children ever born alive (if available for men), age group and sex.
d) Care of disabled family members
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Children with disabilities, by the sex of the household head and household composition. In many national contexts, data reveal that persons with disabilities, especially children with disabilities, tend to live in families headed by women. The care of persons with disabilities is mainly a female responsibility.
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Population 60 years of age and over with disabilities, by five-year age groups of 60-64 years, 65-69 years, etc., by the sex of the household head and household composition.
536. As an example of differential school attendance, consider the following table which was generated on-line from the REDATAM census data base of the census of El Salvador (2007):
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