- Email: [email protected]
Key concepts in disability
Comment
Key concepts in disability
www.thelancet.com Vol 374 November 28, 2009
those without disabilities.7 Poverty might cause disability through malnutrition, dangerous working or living conditions, and poor health care.8 Disability can cause poverty by preventing the participation of individuals with disabilities in education and the economic and social life of their communities.8 People with disabilities require the same range of health services for the diagnosis and treatment of disease, or the promotion, maintenance, and restoration of health as people without disabilities. When disabled people have specific health problems related to their disability, they also require services designed to minimise and prevent further problems in functioning, for example through appropriate medical care and healthrelated rehabilitation.3 When their health condition has stabilised, there might be no further need for specific medical interventions. Disability is multifactorial and complex. Interventions to alleviate the disadvantages experienced by people with disabilities need to be appropriate. Responses depend on the disability and on individual choice, and range from medical care through rehabilitation, support services, and psychological interventions, to
See Editorial page 1793
Trevor Samson/World Bank
Debates have raged within the fields of philosophy, health, and the social sciences about what constitutes disability and how it should be measured. Greater consensus has now emerged, as evidenced by the International Classification of Functioning, Disability and Health (ICF, 2001)1,2 and the UN Convention on the Rights of Persons with Disabilities (2006).3 Both the ICF and the Convention view disability as the outcome of complex interactions between health conditions and features of an individual’s physical, social, and attitudinal environment that hinder their full and effective participation in society. Many of us will experience disability temporarily or permanently at some point in our lives. Most who survive to old age will be increasingly disabled in their final years.4 Traditionally, people with disabilities have been viewed through a medical lens.5 Disability has been narrowly equated with an individual’s health status, impairment, or capacity limitation. This overly medicalised view fails to address the social factors, discrimination, prejudice, and inaccessibility,6 that prevent full participation and contribute to the overall disability experience. Disability is a social issue and by addressing these barriers, society can provide individuals with disabilities the opportunity to exercise their rights on an equal basis with all others. Removing barriers is not a matter of goodwill or charity, but of human rights. People with disabilities have the same human rights as everyone else, but these rights have not historically been respected.3 People with disabilities have often been denied the right to education and work, to marry and raise a family, to participate in community life, to choose to what extent they will use available health-care services, and indeed the right to life itself. While all categories of rights apply to people with disabilities, additional measures (eg, access to support services, vocational rehabilitation, or other habilitation services) might need to be put in place to enable individuals with disabilities to exercise their rights effectively. Society is obliged to do all that can be done to facilitate the enjoyment of these human rights by people with disabilities. The failure to remove barriers is another kind of violation of such rights. Disability is a neglected development issue. People with disabilities are disproportionately represented among the world’s poor and tend to be poorer than
1795
Comment
barrier removal at home, work, school, and in wider society.3 Because disability arises from the interaction between the person with a health condition and the complete physical, human-built, attitudinal, and social environment, society’s responses to disability must take into consideration all aspects of the experience. Where is the evidence base on disability and what works? In 2010, WHO and the World Bank will release the first-ever World Report on Disability and Rehabilitation.9 This report will summarise the scientific evidence about disability worldwide, and identify successful strategies to improve the lives of people with disabilities and promote participation by people with disabilities in their societies. The report will provide governments and civil society with recommendations for action in accordance with the UN Convention, at country, regional, and global levels. Health and public policy practitioners must become familiar with this broader framework and the evidence on what works, if they are to effectively address the needs and respect the rights of people with disabilities. *Alana Officer, Nora Ellen Groce
Department of Violence and Injury Prevention and Disability, WHO, CH-1211 Geneva 27, Switzerland (AO); and Leonard Cheshire Centre for Disability and Inclusive Development, Epidemiology and Public Health, University College London, London, UK (NEG) offi[email protected] We declare that we have no conflicts of interest. 1 2
3
4 5 6 7
8
9
WHO. International classification of functioning, disability and health (ICF). 2001. http://www.who.int/classifications/icf/en (accessed Aug 25, 2009). World Health Assembly. International classification of functioning, disability and health. May 22, 2001. http://www.who.int/classifications/icf/ wha-en.pdf (accessed Aug 18, 2009). UN High Commissioner for Human Rights. Convention on the rights of persons with disabilities. 2006. http://www.un.org/disabilities/default. asp?id=259 (accessed Aug 18, 2009). Robine JM, Michel JP. Looking forward to a general theory on population aging. J Gerontol 2004: 59: 590–97. Oliver M. The politics of disablement. Basingstoke: Macmillan and St Martins Press, 1990. Hahn H. The politics of physical differentness: disability and discrimination. J Social Issues 1988; 44: 39–47. Metts R. Disability and development: background paper prepared for the disability and development research agenda meeting. Nov 16, 2004. http://siteresources.worldbank.org/DISABILITY/Resources/2806581172606907476/mettsBGpaper.pdf (accessed Aug 18, 2009). Department for International Development. Reducing poverty by tackling social exclusion: a DFID policy paper. September, 2005. http://www.dfid. gov.uk/Documents/publications/social-exclusion.pdf (accessed July 18, 2009). World Health Assembly. Disability, including prevention, management and rehabilitation. May 25, 2005. http://www.who.int/classifications/icf/whaen.pdf (accessed Sept 8, 2009).
Health care and the UN Disability Rights Convention See Editorial page 1793
1796
People with disabilities can be healthy.1 Yet too often they are excluded from general health care by numerous obstacles, including a lack of training of health professionals, physical inaccessibility, and communication barriers (such as a lack of signlanguage interpretation).2 Moreover, individuals with disabilities lack coordinated care and are often excluded from health-outreach programmes.3 Disability-based exclusion is bolstered by a lack of awareness among policy makers about this minority group and their needs. In the absence of equal access to health care, people with disabilities are at serious risk of delayed diagnoses, secondary co-morbidities, persistent abuse, depleted social capital, and isolation. Prospects for change have arisen with the entry into force on May 3, 2008, of the UN Convention on the Rights of Persons with Disabilities (CRPD).4 The CRPD obligates states to provide equal access to health care and related services for people with disabilities, and represents the first legally binding international
instrument that specifically protects the rights of some 650 million such people worldwide. It is also the first treaty in which non-governmental organisations were present during negotiations and could make interventions. People with disabilities participated as members of organisations of persons with disabilities, state delegations, and UN organisations. Partly due to this inclusive process, the CRPD has received wide support, with some 143 states having signed and 71 states having ratified the instrument. The core principles of the CRPD include respect for human dignity, non-discrimination, full participation, social inclusion, equality of opportunity, and accessibility. Rights relating to equal access to health care are laid out in separate articles on health, habilitation and rehabilitation, personal mobility, accessibility, women with disabilities, children with disabilities, and general obligations, among others. More specifically, Article 25 (Health) not only ensures the right of people with disabilities to equally access “the highest attainable www.thelancet.com Vol 374 November 28, 2009
Key concepts in disability
www.thelancet.com Vol 374 November 28, 2009
those without disabilities.7 Poverty might cause disability through malnutrition, dangerous working or living conditions, and poor health care.8 Disability can cause poverty by preventing the participation of individuals with disabilities in education and the economic and social life of their communities.8 People with disabilities require the same range of health services for the diagnosis and treatment of disease, or the promotion, maintenance, and restoration of health as people without disabilities. When disabled people have specific health problems related to their disability, they also require services designed to minimise and prevent further problems in functioning, for example through appropriate medical care and healthrelated rehabilitation.3 When their health condition has stabilised, there might be no further need for specific medical interventions. Disability is multifactorial and complex. Interventions to alleviate the disadvantages experienced by people with disabilities need to be appropriate. Responses depend on the disability and on individual choice, and range from medical care through rehabilitation, support services, and psychological interventions, to
See Editorial page 1793
Trevor Samson/World Bank
Debates have raged within the fields of philosophy, health, and the social sciences about what constitutes disability and how it should be measured. Greater consensus has now emerged, as evidenced by the International Classification of Functioning, Disability and Health (ICF, 2001)1,2 and the UN Convention on the Rights of Persons with Disabilities (2006).3 Both the ICF and the Convention view disability as the outcome of complex interactions between health conditions and features of an individual’s physical, social, and attitudinal environment that hinder their full and effective participation in society. Many of us will experience disability temporarily or permanently at some point in our lives. Most who survive to old age will be increasingly disabled in their final years.4 Traditionally, people with disabilities have been viewed through a medical lens.5 Disability has been narrowly equated with an individual’s health status, impairment, or capacity limitation. This overly medicalised view fails to address the social factors, discrimination, prejudice, and inaccessibility,6 that prevent full participation and contribute to the overall disability experience. Disability is a social issue and by addressing these barriers, society can provide individuals with disabilities the opportunity to exercise their rights on an equal basis with all others. Removing barriers is not a matter of goodwill or charity, but of human rights. People with disabilities have the same human rights as everyone else, but these rights have not historically been respected.3 People with disabilities have often been denied the right to education and work, to marry and raise a family, to participate in community life, to choose to what extent they will use available health-care services, and indeed the right to life itself. While all categories of rights apply to people with disabilities, additional measures (eg, access to support services, vocational rehabilitation, or other habilitation services) might need to be put in place to enable individuals with disabilities to exercise their rights effectively. Society is obliged to do all that can be done to facilitate the enjoyment of these human rights by people with disabilities. The failure to remove barriers is another kind of violation of such rights. Disability is a neglected development issue. People with disabilities are disproportionately represented among the world’s poor and tend to be poorer than
1795
Comment
barrier removal at home, work, school, and in wider society.3 Because disability arises from the interaction between the person with a health condition and the complete physical, human-built, attitudinal, and social environment, society’s responses to disability must take into consideration all aspects of the experience. Where is the evidence base on disability and what works? In 2010, WHO and the World Bank will release the first-ever World Report on Disability and Rehabilitation.9 This report will summarise the scientific evidence about disability worldwide, and identify successful strategies to improve the lives of people with disabilities and promote participation by people with disabilities in their societies. The report will provide governments and civil society with recommendations for action in accordance with the UN Convention, at country, regional, and global levels. Health and public policy practitioners must become familiar with this broader framework and the evidence on what works, if they are to effectively address the needs and respect the rights of people with disabilities. *Alana Officer, Nora Ellen Groce
Department of Violence and Injury Prevention and Disability, WHO, CH-1211 Geneva 27, Switzerland (AO); and Leonard Cheshire Centre for Disability and Inclusive Development, Epidemiology and Public Health, University College London, London, UK (NEG) offi[email protected] We declare that we have no conflicts of interest. 1 2
3
4 5 6 7
8
9
WHO. International classification of functioning, disability and health (ICF). 2001. http://www.who.int/classifications/icf/en (accessed Aug 25, 2009). World Health Assembly. International classification of functioning, disability and health. May 22, 2001. http://www.who.int/classifications/icf/ wha-en.pdf (accessed Aug 18, 2009). UN High Commissioner for Human Rights. Convention on the rights of persons with disabilities. 2006. http://www.un.org/disabilities/default. asp?id=259 (accessed Aug 18, 2009). Robine JM, Michel JP. Looking forward to a general theory on population aging. J Gerontol 2004: 59: 590–97. Oliver M. The politics of disablement. Basingstoke: Macmillan and St Martins Press, 1990. Hahn H. The politics of physical differentness: disability and discrimination. J Social Issues 1988; 44: 39–47. Metts R. Disability and development: background paper prepared for the disability and development research agenda meeting. Nov 16, 2004. http://siteresources.worldbank.org/DISABILITY/Resources/2806581172606907476/mettsBGpaper.pdf (accessed Aug 18, 2009). Department for International Development. Reducing poverty by tackling social exclusion: a DFID policy paper. September, 2005. http://www.dfid. gov.uk/Documents/publications/social-exclusion.pdf (accessed July 18, 2009). World Health Assembly. Disability, including prevention, management and rehabilitation. May 25, 2005. http://www.who.int/classifications/icf/whaen.pdf (accessed Sept 8, 2009).
Health care and the UN Disability Rights Convention See Editorial page 1793
1796
People with disabilities can be healthy.1 Yet too often they are excluded from general health care by numerous obstacles, including a lack of training of health professionals, physical inaccessibility, and communication barriers (such as a lack of signlanguage interpretation).2 Moreover, individuals with disabilities lack coordinated care and are often excluded from health-outreach programmes.3 Disability-based exclusion is bolstered by a lack of awareness among policy makers about this minority group and their needs. In the absence of equal access to health care, people with disabilities are at serious risk of delayed diagnoses, secondary co-morbidities, persistent abuse, depleted social capital, and isolation. Prospects for change have arisen with the entry into force on May 3, 2008, of the UN Convention on the Rights of Persons with Disabilities (CRPD).4 The CRPD obligates states to provide equal access to health care and related services for people with disabilities, and represents the first legally binding international
instrument that specifically protects the rights of some 650 million such people worldwide. It is also the first treaty in which non-governmental organisations were present during negotiations and could make interventions. People with disabilities participated as members of organisations of persons with disabilities, state delegations, and UN organisations. Partly due to this inclusive process, the CRPD has received wide support, with some 143 states having signed and 71 states having ratified the instrument. The core principles of the CRPD include respect for human dignity, non-discrimination, full participation, social inclusion, equality of opportunity, and accessibility. Rights relating to equal access to health care are laid out in separate articles on health, habilitation and rehabilitation, personal mobility, accessibility, women with disabilities, children with disabilities, and general obligations, among others. More specifically, Article 25 (Health) not only ensures the right of people with disabilities to equally access “the highest attainable www.thelancet.com Vol 374 November 28, 2009