Keystone Human Services

September 2009

Background

According to the World Health Organization (2009), approximately 650 million people currently live with a disability – about 1 percent of the world’s population – and of these, 200 million are children. By these estimates, having a disability places a person in the world’s largest minority group, a minority group that anyone can join at any point. Moreover, United Nations Enable points out that if calculations were to include family members, there are approximately two billion people directly impacted by disability – almost a third of the world’s population (United Nations, 2009).

Moreover, in spite of (and occasionally because of) our efforts and successes in public health, in both developed and developing countries, the number of people with disabilities continues to rise. In developed countries, people are living longer, increasing the statistical likelihood that they will live with a disability of old age; disability can even be construed as an inevitable public health outcome of the aging population (Guralnik et al, 1996). In developing countries, disabilities frequently arise from inadequate health care, infectious diseases, natural disasters, armed conflict, and social oppression of more subtle kinds. Unsurprisingly, the challenges facing those in the developing world outweigh those experienced in the so-called first world. A staggering 80% of adults and children with disabilities live in the developing world (Leeder & Dominello, 2005). One hundred million people have disabilities caused by malnutrition (Murray & Lopez, 1996). Countless children with severe disabilities die each year as a result of inadequate food, shelter, and access to basic health care services. In some underdeveloped countries, most children with disabilities never reach their twentieth birthday (Charlton, 2000, p.43). Indeed, “mortality rates for children with disabilities can be as high as 80 percent, even in those countries where mortality rates among children who have no disabilities is below 20 per cent. (United Nations, 2007, p.6)”

We have not yet finished with our statistics of despair. Those people with disabilities living in developing nations often suffer related (and mutually exacerbating) social and economic disadvantage because of their disabilities (WHO, 2008). Denial of fundamental human rights is far from unlikely. People with disabilities are still hidden away, institutionalized, throughout the world. In many countries, it is common for children born with disabilities to be abandoned or to be kept segregated from society (Ife, 2008). These public policy decisions are driven by the metaphors we choose to describe people with disabilities. In developing countries –and occasionally in developed ones- we hear people with disabilities described as threats to society, demon-possessed, animals, criminals, bad seed, eternal children, wards of charity –or any of a thousand other role identities. These metaphors reveal the insidious belief that children and adults with disabilities are “objects” of charity rather than “holders” of rights; they evoke sympathy rather than respect (Ife, 2008).

Paralleling the invisibility so common in the developing world, people with disabilities are also invisible in global policy and advocacy platforms. As the Clinton Global Initiative sets out to solve the world’s most pressing social problems, we should acknowledge that the need for disability policy reform has been as invisible as the needs of disabled people themselves. The absence of any mention of the word “disability” in the United Nation’s Millennium Development Goals of 2000 to 2015 is but one example of this oversight (Attaran, 2005). The United Nations Enable (2009) group itself states that “persons with disabilities represent a significant overlooked development challenge, and ensuring equality of rights and access for these persons will have an enormous impact on the social and economic situation in countries around the world.”

One questions, of course, whether singling out people with disabilities as a group deserving special emphasis in global policy decisions might in fact contribute to discriminatory behavior by promoting the concept of “otherness.” The United Nations (2006), in crafting the Convention on the Rights of Persons with Disabilities spoke to this very issue. Certainly, the rights enumerated in the Universal Declaration of Human Rights should be adequate to protect everyone. In practice, however, we know that certain groups –women, children, refugees, and people with disabilities, for example- have fared far worse than the general population. To rectify this imbalance, international conventions have been enacted to protect and promote the human rights of these groups.

Challenges to the Discourse

We would like to begin by choosing our metaphors for disability with care and intention. Yet, we must immediately acknowledge that definitions, models, and methodology remain contested terrain. There is no neutral language with which to discuss disability. Moreover, a single definition that fits all disabilities, all people, and all cultures will, without a doubt, continue to elude us (Altman, 2001). The social model of disability put forth by advocacy groups and the United Nations frames disability as the result of an interaction between a person and his or her environment rather than as a condition that resides within the individual as a result of deficiency (Tregaskis, 2002). As emancipatory a force as this model has been for the past 20 years, it may not be the end of the story.

And absent a shared definition, we should further acknowledge that comparatively little rigorous quantitative research has been undertaken in this field. Indeed, some studies indicate that, for example, the relationship between poverty and disability may be less statistically significant than common sense would indicate (Braithwaite & Mont, 2008). There are methodological complexities to rigorous research that need to be addressed; these complexities include standard assumptions about both disability and poverty –neither of which may be true any longer. Again, the models that frame our understanding today are surely not the end of the story.

Until we come to a shared understanding of meaning and measurement in the field of disability, we are in danger of parroting oft-repeated statistics, while the truth may have shifted underneath us. Sound information is the prerequisite for health action. Absent data on the dimensions, impact, and significance of a health problem it is neither possible to create an advocacy case nor to establish strong programs for addressing it.

Yet, we must start somewhere. For our purposes, we use the term “disability” to include psycho-social and intellectual impairments (mental illness, mental retardation, autism spectrum disorders, and learning disabilities) as well as physical and sensory impairments. Disability is something other than an “all or nothing” set of conditions.

Why Should Issues of Disability have a More Visible Role in the Clinton Global Initiative?

The William J. Clinton Foundation contends that every person has the right to a healthful life, a promising future, and full participation in society. No matter our differences, we share a common humanity where every person deserves equal opportunity for a meaningful life. And yet we have seen that people with disabilities are socially excluded, resulting in part from a system of care that isolates them from their families and communities by placing them in large residential institutions where they spend most or all of their lives. Living literally at the limits of public view, people with disabilities are often marginalized in a way that is not at all metaphorical.

Clearly, the global challenges that thus marginalize people cannot be resolved by a single organization or a single policy statement; the collaborative efforts of diverse stakeholders will be required for real progress to be made. And yet, the Clinton Global Initiative is a powerful forum, perfectly positioned to increase the visibility of disability issues and to propel action that will lead to equal rights for all. While Global Health might be a natural home for a disability focus, we shall see that disability issues are intrinsic to all four of the CGI’s current focus areas.

The Clinton Global Initiative is a forum that can turn these ideas into action, moving “beyond the annual meeting.” The CGI has the power to gain substantial visibility, traction, as well as the benefits that come from a celebrity spokesperson.

Relationship Between Disability and the CGI Focus Areas

Precisely because disability has crosscutting themes connecting all the CGI focus areas, we propose that the CGI consider an increased focus on disability in Global Health work groups and symposia, papers, and by adding a Disability Affinity Group for the 2010 Annual Meeting. Though likely to be best supported by the CGI Global Health Division, an increased focus on disability issues overall would have the power to create a synergy among the four focus areas of Health, Poverty, Education, and Climate Change.

Health

Issues of disability affect every aspect of global health. People with disabilities are often excluded from health care resources due to physical barriers, attitudinal barriers, or systems barriers. Many of the emerging best practices in public health, such as clean water, vaccines, and integrated diagnostic and treatment services, exclude people with disabilities from access to their benefits (Michaud et al, 2001). Moreover, public health initiatives are often implemented without consultation from people with disabilities or professionals in the disability field (Charlton, 2000). It is no surprise, then, that the results are frequently programs inaccessible to people with disabilities.

Moreover, disability is often associated with poor nutrition, illiteracy, and unhealthy or dangerous working conditions. Approximately 170 million of the world’s children are malnourished, often at a cost of normal physical and intellectual development (Rehabilitation International, 2001). Mental disorders are recognized to be among the risk factors for both communicable and non-communicable diseases (Link & Phelan, 1995). Mental disorders can contribute to unintentional and intentional injury, resulting in disability (Cohen et al, 2003).

People with disabilities are particularly vulnerable to abuse, as well as sexual and financial exploitation. This is especially true of women and girls with disabilities. For example, a 2004 survey in Orissa, India found that virtually all of the women and girls with disabilities had been beaten at home, 25 percent of women with intellectual disabilities had been raped, and 6 percent of women with disabilities had been forcibly sterilized (Mohapatra & Mohanty, 2004). A study of child prostitutes in Taiwan reports that 5.4% have mental disabilities and an additional 29% have borderline intellectual disabilities (Sobsey, 2003). UNICEF points out that, again in Taiwan, proprietors of houses of prostitution specifically seek out girls with hearing impairments, believing they will then be less able to communicate their distress or to find their way back home (UNICEF, 2007).

Poverty

Disability is both a cause and a consequence of poverty. Poor people are disproportionately disabled, and disabled people are disproportionately poor (Hoogeveen, 2005). The United Nations report on the rights of persons with disabilities says it well: “While poor people are significantly more likely to acquire disabilities during their lifetimes, disability can result in poverty, too, since disabled persons often face discrimination and marginalization (2008, p6).” Well over 50 percent of disabilities are considered to be preventable and directly linked to poverty. This is particularly true for disabilities arising from malnutrition, maternal under-nourishment and infectious disease (Pope and Tarlov, 1991). Over 85 percent of people with disabilities live in poverty (Elwan, 1999). Moreover, the presence of a child with a severe disability affects the functioning and economic viability of the family, including the siblings. A high level of poverty and a dearth of alternatives to institutional placement strongly influence a family’s decision to place a child in the care of the government, frequently institutional care (Llewellyn et al, 1999).

According to the Global Partnership for Disability and Development , “The chronic and vicious cycle of disability and poverty is a critical threat to the eradication of poverty and the enhancement of sustainable development in several of the world’s poorest regions (Hamel, p 1). Moreover, the same source claims that “many poverty reduction strategies and ambitious projects that seek to achieve the Millennium Development Goals and a critical reduction in poverty around the world fail to capture the necessity of incorporating the needs of people with disabilities, and their voices, in the design and implementation of these programs.

Education

According to the Universal Declaration on Human Rights, everyone has a right to an education (United Nations, 1948). This is not a new claim, of course, and globally we have spent a considerable sum on improving access to education. And yet, the fundamental problem –illiteracy rates- has changed only modestly in either developing or industrialized countries (Wagner & Kozma, 2003). Schooling, we have learned, is not quite the same thing as learning. However it can scarcely be surprising at this point that people with disabilities have been excluded from even the modest successes realized in the general population. UNESCO reports that ninety percent of children with disabilities in developing countries do not attend school and that the global literacy rate for adults with disabilities is as low as 3 percent and 1 percent for women with disabilities (2006).

Moreover, we have had plenty of time since the Declaration on Human Rights to document the relationship between education, employment (another fundamental human right, by the way), and the ability to rise from poverty. The World Bank highlights the importance of education in global development thus: “It is the foundation of all societies and globally competitive economies. It is the basis for reducing poverty and inequality, improving health, enabling the use of new technologies, and creating and spreading knowledge (Wolfensohn, 2002). The familiar feedback loop between disability and poverty is operative here as well. Ninety percent of disabled children in developing countries do not attend school (cf UNESCO above). Earnings of disabled people have deteriorated relative to those of other employees from the period of 1979-1991 (Blackaby et al, 1999) Individuals with disabilities may account for as many as one in five of the world’s poorest. As with more general, primary education, disabled youth and adults are similarly excluded from training and employment. These violations of human rights are inextricably linked to the cycle of poverty. The right to education is universal and must extend equally and inclusively to all, including children, youth, and adults with disabilities.

A parallel, linked consequence is the broader social transformation resulting from the convergence of computers and communication technologies and their assimilation throughout society. As information and communication technologies become more accessible and embedded in society they offer the potential to make education more widely available, foster creativity and productivity, increase democratic participation and the responsiveness of governmental agencies, and enhance the social integration of individuals and groups with different abilities and of different cultural backgrounds. Once again, however, people with disabilities are -intentionally or not- excluded from the benefits of that technological innovation. The technology itself might be the barrier, if, for example, it has been designed with no accommodations for those with visual or physical impairments. Or, the emerging requirement that information technology users must be able to rapidly process varied and complex information might create an impediment for people with intellectual or cognitive disabilities.

Climate Change

We hardly need to defend the claim that the physical environment of the planet is changing (David et al, 2006). There is something near consensus that greenhouse emissions have already changed the climate. There is also clear epidemiological evidence that climate change affects human health –mostly adversely. Research so far has mostly focused on thermal stress, extreme weather events, and infectious diseases, with some attention to estimates of future regional food yields and hunger prevalence. An emerging broader approach addresses a wider spectrum of health risks due to the social, demographic, and economic disruptions of climate change (McMichael et al, 2006).

Additionally, following natural disasters, environmental crises, migrations, and civil conflicts (frequently caused by climate change), people with disabilities are often the first affected, suffer the most severe impact, and are the last to receive assistance and/ experience recovery (Van Willigen et al, 2002). Disability acts to decrease access to resources including food, water, shelter, security, evacuation, recovery, medical care, and economic support. While physical disability is a barrier to access, the social impact of being perceived as a “marginal” person also acts as a serious impediment to receipt of critical services. In survival environments, families, officials, and other empowered individuals will make critical decisions about where to invest limited life sustaining resources, and that investment will typically be in persons perceived as valued social contributors.

Of course, it is nearly nonsensical to treat these four themes as though they were unrelated to each other. The goals of disaster mitigation and adaptation to climate change are not mutually exclusive. In fact, steps to make populations more resilient in the face of climate change are often similar to those that are needed to lighten the load on the environment. Forward-thinking social policies can convert economic growth into human development. Promoting health in poor and vulnerable populations is a key to productivity and to achieving broader development goals such as universal education. Addressing even one will positively affect the others, even if only slightly. Neglecting one endangers the whole.

Objectives for Increasing the Visibility of Disability Issues Within the Clinton Global Initiative

• To use our shared resources to revisit and refine our data and definitions, to ensure that they match our aspirations and the lived experiences of people with disabilities;
• To enhance the quality of life and promote and protect the rights and dignity of people with disabilities through local, national, and global efforts.
• To increase awareness about global disability concerns and promote equal rights for all.
• To share responsibilities and actions regarding disability issues.
• To strengthen cooperation among diverse stakeholders, highlighting our common humanity.
• To support the integration of disability concerns into existing economic development efforts.
• To increase the resources devoted to disability issues, and the efficiency with which they are used.
• To ensure that issues of disability are considered in technology innovation, policy and development.
• To improve the quality of social and economic policy development worldwide through a focus on disability issues.
• To close large residential institutions throughout the world where people with disabilities are warehoused, and to reduce the many factors compelling families to isolate their family members with disabilities.
• To support governments and NGOs in the development of community-based supports for people with disabilities and their families and the creation of community alternatives to institutional care.
• To increase the number of children with disabilities who remain with their families from birth and are supported to the degree they request so that they may remain in their own communities throughout their lives.
• To provide integrated education opportunities for all children.
• To utilize technology to ameliorate the obstacles faced by persons with disabilities.
• To promote NGO diplomacy through a “nonprofit Peace Corps” model.

Conclusion

The disability rights movement is a latecomer to the world's civil rights movements, but there is great momentum for change in the current decade. The problems outlined here are not insurmountable. Indeed, the public health community has demonstrated time and again how a comprehensive plan backed by solid evidence can attract political attention, inspire partners, secure funds, and motivate the progress of a particular cause. With the current momentum from actions like the UN Convention of Persons with Disabilities, the creation of the Global Partnership for Disability and Development, the World Health Organization’s recently launched mental health Gap Action Programme (mhGAP), the anticipated WHO World Report on Disability and Rehabilitation, and other global initiatives aimed at shaping policy and enhancing the lives of people with disabilities, now is the time for change.

It is proposed, therefore, that issues of disability be given a more visible role in the CGI Global Health Division, and in all of the CGI focus areas. This change could include an increased focus on disability in Global Health work groups, symposia, and papers. It is also proposed that the CGI host an Affinity Group on Disability Issues at the 2009 or 2010 Annual Meeting, and that disability concerns be included in all relevant committees and policy statements within the CGI. A CGI Affinity Group on Disabilities might focus on:

1. Building community-based systems of care that will obviate the need for large congregate institutions;
2. Promoting a vision that all children and adults living with a disability should be valued, fully participating, contributing members of their communities.

Affinity Group participants might include:

1. Major foundations
2. Governments working toward the goals of equal rights for all
3. Private sector agencies actively implementing principles of equality
4. Human Rights advocacy and professional associations
5. Self-advocates and family members working toward full inclusion
6. Universities and colleges.

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Keystone Human Services

A member of the Clinton Global Initiative since 2007, Keystone Human Services is a 501(c) 3 nonprofit organization providing community-based systems of care in autism, intellectual disability, mental illness, physical disability, deinstitutionalization, early childhood development, and family services. For thirty-eight years, Keystone has supported children and adults as they return home from large, congregate, public institutions, frequently assuming a leadership role in the closing of those institutions of mass care. With services in Pennsylvania, Connecticut, Maryland, Delaware, Russia, and Moldova, Keystone Human Services also advocates for public policy that acknowledges and empowers our service population.

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Bibliography

Altman, B. (2001). Disability definitions, models, classification schemes, and Applications. In G. Albrecht, K. Seelman & M. Bury (Eds.), Handbook of disability studies (97-121). Thousand Oaks, CA: Sage Publications.

Attaran A. (2005). An immeasurable crisis? A criticism of the Millennium Development Goals and why they cannot be measured. PLoS Med, 2(10): e318.

Blackaby, D., Clark, K., Drinkwater, S., Leslie, D., Murphy, P., & O’Leary, N. (1999). Earnings and employment opportunities of disabled people. Department for Education and Employment, Research Brief No. 133. 1-4.

Braithwaite, J. & Mont, D. (2008). Disability and poverty: A survey of World Bank poverty asssessments and implications. Social Protection Discussion Papers, Geneva: World Bank.

Charlton, J. (2000). Nothing about us without us: Disability oppression and Empowerment. Berkeley, University of California Press.

Cohen, L., Miller, T., Sheppard, MA., Gordon, E., Gantz, T., & Atnafou, R. (2003). Bridging the gap: Bringing together intentional and unintentional injury prevention efforts to improve health and well-being. Journal of Safety Research, 34(5), 473-483.

David, L., Bender, L., & Burns, S. Z. (Producers), Guggenheim, D. (Director). (2005). An inconvenient truth [Motion picture]. United States: Paramount Classics.

Elwan, A. (1999). Poverty and disability: A survey of the literature. Social Protection Discussion Papers, retrieved from http://www.wds.worldbank.org/external/default/WDSContentServer/IW3P/
IB/2000/12/15/000094946_0011210532099/Rendered/PDF/multi_page.pdf.

Hamel, K. (2009). Disability and development. Global Partnership for Disability and Development, retrieved from http://gpdd-online.org/disability/.

Guralnik JM, Fried LP, Salive ME. (1996). Disability as a public health outcome in the aging population. Annual Review of Public Health, 17(25-46).

Hoogeveen, J. (2005). Measuring welfare for small but vulnerable groups: Poverty and disability in Uganda. Journal of African Economies, 14 ( 4), 603-631.

Ife, J. (2008). Human rights and social work: Towards rights-based practice. New York: Cambridge University Press.

Leeder, SR, Dominello, A. (2005). Health, equity, and intellectual disability. Journal of Applied Research in Intellectual Disabilities. 18(2):97-100.

Link, B., & Phelan, J. (1995). Social conditions as fundamental causes of disease. Journal of Health and Social Behavior. 35: 80-94.

Llewellyn, G, Dunn, P., Fante, M., Turnbull, L., Grace, R. (1999). Family factors influencing out-of-home placement decisions. Journal of Intellectual Disability Research. 43(Part 3):219-233.

McMichael, A.J., Woodruff, R.W., and Hales, S. (2006). Climate change and human health: Present and future risks. The Lancet. 367 (9513): 859-869.

Michaud, C., Murray, C., & Bloom, B. (2001). Burden of disease-implications for future Research. Journal of the American Medical Association. 285(5): 535-539.

Mohapantra, S., & Mohanty, M., (2004). Abuse and activity limitation: A study on domestic violence against disabled women in Orissa, India. A research report of a project funded by the Oxfam (India) Trust. Bhubaneswar, Orissa: Swabhiman.

Murray, C and Lopez, A., (1996). Evidence-based health policy: Lessons from the global burden of disease study. Science. 274 (5288): 740 – 743.

Pope, A.M., & Tarlov, A.R. ( Eds.). (1991). Disability in America: Toward a National Agenda for Prevention. Washington, D.C.: National Academy Press.

Rehabilitation International. (2001). Children with disabilities: Global priorities. Disability World. Retrieved from http://www.disabilityworld.org/07-08_01/children/global.shtml.

Sobsey, D. (2003). Children with disabilities and the United Nations study of violence against children, culture and the state [electronic journal]; retrieved from http://www.arts.ualberta.ca/cms/sobsey.pdf, 230-238.

Tregaskis, C. (2002). Social model theory: The story so far. Disability & Society. 17 (4): 457 – 470.

United Nations (1948), Universal Declaration on Human Rights, retrieved from http://www.un.org/en/documents/udhr/.

United Nations (2006) Final report of the Ad Hoc committee on a comprehensive and integral international convention on the protection and promotion of the rights and dignity of persons with disabilities, retrieved from http://www.un.org/disabilities/convention/conventionfull.shtml.

United Nations –UNICEF. (2007). From exclusion to equality: Realizing the rights of persons with disability. Retrieved from http://www.un.org/disabilities/documents/toolaction/ipuhb.pdf, 6.

United Nations –UNESCO. (2006). Some facts about persons with disabilities. Retrieved from http://www.addc.org.au/webdocs/key%20facts/factsheet.pdf.

United Nations -World Health Organization (2008), World report on disability and rehabilitation. Retrieved from http://www.who.int/nmh/a5817/en/.

Van Willigen, M., Edwards, T., Edwards, B., & Hessee, S. (2002). Riding out the storm: Experiences of the physically disabled during hurricanes Bonnie, Dennis, and Floyd. Natural Hazards Review. 3(3): 98-106.

Wagner, D.A., & Kozma, R. (2003). New rechnologies for literacy and adult education. National Center on Adult Literacy. [electronic preprint] retrieved from http://literacy.org/products/wagner_kozma.pdf.

Wolfensohn J. (2002, December 3). Poor, disabled and shut out. The Washington Post, Page A25.

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