Emerging Trends in The Social and Behavioral Sciences

Disability in a Global Context

Item

Title

Disability in a Global Context

Author

Albrecht, Gary L.

Research Area

The Individual and Society

Topic

Health and Illness

Abstract

Disability is a condition that directly involves over 15% of the global population with reverberations throughout every nation and level of society. The World Bank, World Health Organization, and Gates Foundation emphasize that this population has serious social and economic effects on the stability and development of nations and well‐being of individuals touched by disability. This essay places disability in a global context and details the foundational work in the field. Cutting edge research combining biomedical advances, smartphone and computer technology, robotics, artificial intelligence and analysis of social networks and cultural contexts, disability activism and agency, and physical, social, political, and economic environments are examined. Looking to the future, the essay explores the consequences of global population growth, migration, environmental changes, and increased demand for services and technological innovation on the world's disabled population, their social networks, and nations. Lastly, the importance of exploring global disability in all areas of the world while being open to similarities and differences is emphasized.

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Identifier

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extracted text

Disability in a Global Context∗
GARY L. ALBRECHT

Abstract
Disability is a condition that directly involves over 15% of the global population with
reverberations throughout every nation and level of society. The World Bank, World
Health Organization, and Gates Foundation emphasize that this population has serious social and economic effects on the stability and development of nations and
well-being of individuals touched by disability. This essay places disability in a global
context and details the foundational work in the field. Cutting edge research combining biomedical advances, smartphone and computer technology, robotics, artificial
intelligence and analysis of social networks and cultural contexts, disability activism
and agency, and physical, social, political, and economic environments are examined. Looking to the future, the essay explores the consequences of global population
growth, migration, environmental changes, and increased demand for services and
technological innovation on the world’s disabled population, their social networks,
and nations. Lastly, the importance of exploring global disability in all areas of the
world while being open to similarities and differences is emphasized.

DISABILITY IN A GLOBAL CONTEXT
Disability is a condition universally found around the world in all segments
of society but not always recognized, accepted, or understood. For many, disability is seen as something disgraceful, abnormal, or different—something
to be ignored or avoided. Yet, most individuals will personally experience
disability in their lifetimes, deal with disabled family members, or confront
people with disabilities at school, work, and in public spaces. In a joint effort
to better understand disability on a global scale, the World Health Organization (WHO) and the World Bank produced the World Report on Disability
(World Health Organization, 2011) that estimated, based on nationally representative data sets from 59 countries, that about 15% of the world’s population or more than a billion people live with some form of disability. For each
person with a disability, many others in their families and social networks are
∗ This essay was supported in part by a fellowship from the Royal Academies for Science and the Arts
of Belgium.

Emerging Trends in the Social and Behavioral Sciences.
Robert Scott and Marlis Buchmann (General Editors) with Stephen Kosslyn (Consulting Editor).
© 2017 John Wiley & Sons, Inc. ISBN 978-1-118-90077-2.

1

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

affected. These numbers are likely to increase as the world’s population was
7 billion in 2011, is 7.5 billion in 2017, and is projected to be about 10 billion
in 2050 (United Nations, Populations Division, 2017).
In a more granulated view of disability distribution and consequences,
the Global Burden of Disease Study (Global Burden of Disease 2015 DALYS
and HALE Collaborators, 2016) frequently reports on disability-adjusted
life years, increased healthy life expectancy, and how these factors relate to
national development based on data from 188 countries. Among many consequences, disability has a significant effect on the economic well-being of
individuals, families, social welfare systems, and global development. What
is equally important is that the assessment of disability distribution and
consequences is an organic, real-time exercise due to the emergence of new
conditions such as HIV/AIDS, ongoing and new wars, increased numbers
of refugees, malnutrition due to drought, increased migration of diseases
such as Zika, and lack of effective control over increases in such conditions
as obesity, diabetes, smoking, and degradation of the environment. For these
reasons, disability cannot be easily avoided, walled off, or ignored.
FOUNDATIONAL RESEARCH
Most of the foundational research on disability is Western centric and
medical model oriented. Disability is a complex concept difficult to measure
(Altman, 2016). Disabilities can be physical, mental, emotional, sensory, and
intellectual. Often individuals with disabilities have multiple disabilities.
Disabilities can also originate at birth or occur later in life. Furthermore,
impairments and the resulting disability can be episodic such as bouts of
depression, migraine headaches or pain, or persistent conditions such as
spinal cord injuries and permanent brain damage from a traumatic accident.
Initially, disability was defined and measured in terms of physical and
mental anomalies that were deemed to limit “capacity to perform” or “loss
of function.” In the United States, for persons with a disability to receive
disability benefits, they had to be certified by a physician that they had
a medical condition that limited them or prevented them from working
(Albrecht, 1992). The WHO had long been concerned with the international
classification of diseases and subsequently with functioning and disability
associated with health conditions (International Classification of Functioning, Disability and Health). Both classification schemes begin with body
systems but the ICF concentrated on (i) body functions and structures and
(ii) activities and participation (World Health Organization, 2001).
A significant reorientation to disability occurred when social scientists
pointed out in their research that disability can be a socially constructed concept and that activity limitation and participation can be seriously shaped

Disability in a Global Context

3

by an individual’s physical, social, economic, and political environment.
Goffman’s (1961) Asylums, Scott’s (1969) the Making of Blind Men and the
early work in environmental psychology, which argued that social context
and place influenced behavior, grounded this perspective. This work, along
with that of Nagi (1965) and Zola (1989) in the United States and Barnes
(1991) and Shakespeare (2006) in the United Kingdom developed into the
social model of disability. As a result, WHO reconceptualized the concept
of disability and how it should be measured. This is reflected in its biopsychosocial model, which is more inclusive than that of just medicine where
“disability is the umbrella term for impairments, activity limitations and
participation restrictions, referring to the negative aspects of the interaction
between an individual (with a health condition) and that individual’s
contextual factors (environmental and personal factors)” (World Health
Organization, 2011, p. 4). Thus, disability is now viewed as a result of the
interaction between individuals with all of their characteristics and their
physical, social, economic, and cultural environments.
The work of the WHO, World Bank, Centers for Disease Control (CDC),
and the Ford and Gates Foundations in diverse corners of the world have
drawn attention to the fact that disability is distributed globally and can
affect health, migration, and economic well-being at remarkable distances
(Devlieger & Strickfaden, 2016). In a global economy, disability in the labor
force in one part of the world results in productivity losses and places considerable strain on welfare systems along global production and distribution
chains (Gifford, 2017).
Disability was historically addressed in Western countries medically
through the growth of rehabilitation medicine and adjunct interventions
such as physical and occupational therapies. During and after WW I
and WW II, the Veterans Administration and Vocational Rehabilitation
Administration were formed to assist disabled military personnel recover
and hopefully return to the labor force. The Vocational Rehabilitation
Administration extended this concept to persons in the domestic labor force
who were disabled on the job (Gritzer & Arluke, 1985).
Social and behavioral scientists in the 1960s and 1970s recognized that
disability was much more than a medical or disease problem and indeed
affected all areas of human activity. Within the American Psychological
Association, an interest section was formed around rehabilitation psychology. A group of sociologists in the 1970s developed interest sections in
social science organizations that grew to become the Society for Disability
Studies. Later in the process, scholars in the humanities, history, arts and
literature joined the Disability Studies movement to explore how disability
is represented in culture and society (Davis, 2014). The CDC built on its
historical strengths in epidemiology to ask questions about how disability

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

fits into a public health perspective where emphasis in on the conditions and
environments that produce disability. Some examples are present initiatives
in smoking prevention, preventing and controlling obesity, encouraging
“healthy” diets including fruits and vegetables, and incorporating consistent
exercise into daily life styles. In this context, disability became a central
focus of those movements that encourage healthy living, sports and physical
activity, walking, and climbing stairs in our everyday lives (Rimmer &
Marques, 2012).
As these movements took shape, an additional social movement characterized by the saying “Nothing About Us, Without Us” united activists and
human rights advocates. People with disabilities did not want to be treated
as dependent and closeted individuals but as active agents in their own rehabilitation and daily lives. Disabled people, particularly academics, advocated
for having a say in their lives. They focused on “breaking down barriers” to
full inclusion in society, which included mainstreaming students in the classroom, the rights to work, bear children, and vote, modification of the physical
environment with curb cuts, power-assisted doors, ramps in place of stairs,
and accessible bathrooms and kitchens (Linton, 2007). While the battle goes
on, these movements resulted in the Americans with Disabilities Act of 1992,
which was imitated by many other nations in the world, and the UN Declaration of the Rights for Disabled People, which recognizes their rights as
citizens of countries and the world.
CUTTING EDGE RESEARCH
In the medical and health arena, enormous research strides have been
made in combining advances in imaging, genetics, biomarkers, nano-sized
medicines and interventions, computer-controlled prostheses, “smart”
houses that can recognize through computer sensors the needs and adjustments that residents desire, and accessible, community-based transportation
that allows persons with disabilities to get out and about, to be as independent as possible and have control of their own lives. The advances in
smartphone technology and apps have given agency back to people with
disabilities (Trevisan, 2016). They are better equipped to organize their lives,
stay in touch with family, friends, and personal assistants, and summon
health care when needed. As a consequence, disabled people are able to
live independently in the community as was not possible before. These
insights into the daily lives and desires of people with disabilities have
also had a significant impact on understanding aging, permitting older
people to live independently, and yet be in contact with support services
when needed. The artificial intelligence technology behind voice-activated
software, self-driving cars, aids in increasing compliance to take necessary

Disability in a Global Context

5

medications, engaging in therapeutic exercise, and organizing and managing one’s life all contribute to increasing the level of independence for
disabled and elderly people.
In the social arena, the concept and development of social networks has
added to our understanding of how humans function in complex social
worlds and how to organize lives and produce aids that will improve the
quality of lives of individuals and their communities. The theoretical and
empirical advances in understanding and utilizing social networks allows
health care teams and disabled people and their families and friendship
groups to integrate information and care to produce a support system that
is centered on the person with disability. As Christakis and Fowler (2011)
pointed out in Connected, we are keenly affected by our social environment.
We are likely to behave like those that are in our social networks and
neighborhoods. These insights have deep implications for how people
become disabled, whom they relate to, how they deal with their disabilities,
how they live their lives, and how much agency they exercise in their daily
lives (Albrecht, Devlieger, & Van Hove, 2009). The power of networks
builds on the earlier work of Zola, the community housing of L’Arche
and the Independent Living Movement designed to keep disabled people
in the community by building communities where they can live together
independently in a supportive environment (Zola, 1982).
The wide use of social media helps people with disabilities stay connected
to the health and social service community, family, and friends in ways not
imagined 20 years ago. Individuals can use the internet, data bases, outcomes research, and discussion groups to learn about their conditions, inform
their decisions, and seek support. The use of social media in conjunction
with computerized information systems also allows people with disabilities
to navigate the complexities of the health, insurance, and benefits worlds
and better to ensure that they are taking advantage of the resources available to them. These efforts generally result in an improved quality of care at
lower prices. People with disabilities are able to unite and do comparative
shopping.
Disability activists are also in a much stronger position to advocate for
their interests and become internationally visible. The change from compliant, fairly uniform, or even undiagnosed “patients” to highly visible,
informed, and organized groups lobbying and intervening on the part
of disabled people and their families is stunning (Iriate, McConkey, &
Gilligan, 2015). Disability activists have helped to insure that the public,
politicians, and government bureaucrats are aware of their existence, needs,
and demands (Nakamura, 2013). These activists have made their presence
known through the United Nations, European Union, Americans with
Disabilities Act, Special Olympics, and a host of cultural events in which

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

people with disabilities are the central characters in plays, novels, media
stories about disabled immigrants, and the effects of displacement, drought,
and war.
Scholars in the arts and humanities have added to the discussion of
disability by examining how disability has been understood and portrayed
across history and culture. For much of history people with disabilities were
hidden from view unless they had special privilege (Stiker (2013). Snyder
and Mitchell (2006) show how people with disabilities were viewed as
biologically deviant and as not “normal.” Society saw them as “defective”
and subject to laws of eugenics, which during the age of the Nazi’s, for
example, made them undesirable and the object of regulations, which for
many meant isolation in camps or even death in the eugenics movement
during WW II. In a careful historical analysis, Stargardt (2015) points out
that more disabled people were eliminated by lethal injections or in the
crematoria than native German Jews. Under this type of regime, people
with disabilities were to be identified and regulated, which still resonates
in some levels of society around the world today (Weiss, 2007). They and
others, such as Erickson (1966) in The Wayward Puritans point out how
disabled people have fought a long battle in charting a passage from living
in a disciplinary society to one based on acceptance and self-regulation.
Classic books in this tradition, such as Charlton’s (1998) Nothing About Us
Without Us, Frank’s (1995) The Wounded Storyteller, and Frank’s (2000) Venus
on Wheels, take the point of view of individuals reaching out to redefine
themselves in the larger society. Iezzoni and O’Day (2006) go further arguing
that inclusion and accessibility involves more than building ramps and
improving access to the present health care system. True inclusion means
cultural acceptance and access to services and civil liberties enjoyed by the
larger population.
This leads us to considering fitting people with disabilities to their physical,
social, and cultural environments. Rather than taking the present as a given,
contemporary scholars and researchers examine how to build a physical and
social environment that is welcoming to people with differences, including
disabled people. These issues and accomplishments take us into a society in
which all citizens are accepted in their richness and difference. At the core,
these debates are about who is human, a citizen, has fundamental rights and
is accepted into the larger society (Bloemraad, Korteweg, & Yurdakul, 2008).
LOOKING AHEAD: KEY ISSUES FOR FUTURE RESEARCH
The issues on the horizon repeat those seen earlier in history and add
a current stage of urgency to the place of disabled people in society.
Looking ahead to 2050, world demographic trends demand a close watch by

Disability in a Global Context

7

researchers and increase pressure on disability policy makers and activists.
During this period, the world population will grow to almost 10 billion
people, life expectancy will most likely continue to increase because of
better public health, and more countries will implement national health
care systems. The absolute numbers of people with disabilities will increase,
placing increased economic and service strains on national, medical, and
social welfare systems. The complexity of the changes is critical to understand and plan for (Coleman, 2006). Population growth in the EU, Japan
and the United States, Canada, Australia, and New Zealand will be less
than at a replacement rate while that of Africa and some Asian and South
American countries will continue to increase above replacement rates. As a
result, the young labor force needed in the job markets of many developed
countries to generate GDP (gross national product) and care for the aging
populations will have to come from immigrants or from a massive program
of robot assistants and use of artificial intelligence. Even if this is the case,
governments or perhaps public/private partnerships will have to plan
for, fund, and operate these systems. The world population growth in the
next 30 years most likely implies a concomitant increase of the numbers of
disabled people distributed globally (Saika, Bora, Jasiloionis, & Shkolnikov,
2016). The thorny part of this demographic scenario is that at the time that
many developed countries are becoming more nationalistic and inward
looking, they will need a younger labor force to keep GDP growing and
considerable numbers of service workers to care for an aging population
and increased numbers of disabled people. Researchers at the Global Burden
of Disease project and the Gates Foundation are aware of these issues but
more work needs to be done worldwide to monitor and respond to these
problems. Furthermore, researchers can produce data and make informed
forecasts about the future but the public and politicians need to be educated
to work from real data and outcomes research. This has caused considerable
concern among scientists who see that social policies and political actors are
not always receptive to scientific evidence. There is a cost to not responding
to impending demographic changes.
A second set of research efforts would redirect the traditional perspective
from the disabled individual to social networks and social relationships.
Disabled people do not live in isolation or just with other disabled people
but in a society where they deeply touch the lives of their family members,
spouses, friends, neighbors, and coworkers. From this perspective, people
who interact with disabled people often become “co-owners” of the conditions and challenges they pose. Since this produces a multiplier effect,
in all likelihood up to a third of the world’s population is in some manner
impacted directly or indirectly by disability. Yet this raises a paradox. How
can it be that conditions that are so common are seen as rare? For most

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

people, disability is not of personal concern until it happens to them or
someone close to them. Past analyses of disability have profited from the
concepts of shame, stigma, and marginality to explain how people with
disabilities do not make it to the center stage of life nor merit prolonged
attention.
In contemporary life, there is considerable migration from rural communities to urban metropolises. In the digital revolution, transactions take place
not face to face in a community but anonymously over the internet. Social
media permit contact to be depersonalized without sight, sound, smell, or
context. Twitter allows complex ideas to be reduced to 140 characters and texting encourages emotions to be expressed by emojis. On Facebook, a central
controlling concept is being “friended.” What does this sort of “friending”
mean for an elderly parent or disabled person rather than a personal visit or
joining family and community events in person?
The rise of artificial intelligence in human service industries ranging from
assisting physicians diagnose and treat complex conditions to planning
and monitoring complex treatment plans and medication compliance by
electronic sensors adds to this sense of loss of control, oversimplification
of emotionally laden experiences, and being “distanced” where one is
out of sight and mind. The consequences for their quality of life are discouraging. In discussing “difference” in society, Solomon (2012) concludes
that intimacy with different people and conditions fosters understanding,
acceptance, and accommodation. Yet this does not happen being isolated
in homogeneous groups, being emotionally “distanced,” treated as a case
in a computer algorithm, or rejected if unable to meet the norms of others.
These issues bear upon disabled people as well as the larger society and cry
out for analysis and solutions to reintegrate “different” people into a larger
society.
The next set of future research issues regard the use of emergent technology
pertaining to disability. At a time when robots are likely to replace workers in manufacturing industries and artificial intelligence systems are taking
over much of the work in the service industries, where will people finds jobs
(Friedman, 2016)? Typically, most workers that care for disabled people are in
low-paying jobs. The people most agreeable to working in these jobs for these
salaries are minorities and immigrants. Yet, the demand for services comes at
a time when we are preventing and drastically controlling immigration and
not well educating minorities for jobs of the future.
Japan is responding to these problems by developing personal care
robots to support persons with disability and older people. While there are
promises in this direction, there is also the issue of human support. Are
disabled people and the elderly content with just dealing with robots and
artificial intelligence supports or do they need more human and emotional

Disability in a Global Context

9

contact to have physical, emotional, and mental well-being? These issues
require research.
Research on the body will expand in breadth and depth. There is a strong
tradition on the sociology of the body, psychological work on brain–body
interactions, exciting work on the regeneration of tissue and limbs, replacement of body parts and cognitive-computer interfaces. Future work will combine what we know about the body, computers, artificial parts, medicine, and
biology in producing integrated work where these different advances can be
combined to prevent disabling conditions and improve the daily functioning
and well-being of disabled people (Kurzweil, 2005).
Our understanding of disability has been very Western centric. A large
and disparate body of research is coming from developing countries and the
Southern Hemisphere (Grech & Soldatic, 2016). In the past, we have typically taken Western models and understandings of disability and imposed
them on studies and service systems in other parts of the world when, in fact,
there is much to be learned from how others define, interpret, and respond
to disability (Booyens, Van Pietzen, & Lorenzo, 2015). Types of disability and
responses to them differ by culture and country (Elo, Mehta, & Huang, 2011).
For instance, in Africa and Asia people with disabilities such as blindness
and cognitive impairments are seen to have special powers or to be avoided.
A woman from Zambia was thought to be dangerous and a witch because
she had epileptic seizures (Albrecht, Devlieger, & Van Hove, 2008). Others
are seen to be socially useful in business transactions. Spinal cord injured
men in Kinshasa who used wheel chairs were seen as a valuable asset in business because, by local laws, they could transit the Congo River and on their
way take goods back and forth between Kinshasa and Brazzaville. This facilitated local commerce (Devlieger & Nieme, 2011). In another example, the
meanings and treatment of leprosy have changed and evolved so that today
the disease is seen and treated differently in South Africa, Indonesia, and
Hawaii. Even in one country, such as the United States, there is considerable
discussion and conflict about what to do with the Pere Damien Leper Colony
on the Island of Molokai (Devlieger, 2016). Likewise, becoming disabled in a
conflict zone has different meanings than becoming disabled in an auto accident. The point is that there is much to be learned by doing field work across
to world to supplement the knowledge of disability that we have from large,
international surveys and pooled data from health care facilities.
By definition and as observed in field work, the physical, social, economic,
and political environment has tremendous influence on how people acquire
disabilities and how they to respond to them (Altman & Barnhardt, 2014).
We need to know much more about the interplay between people with
disabilities and their environments (Srivasta & Kumar, 2015; Zuurmond,
Nyapera, Mwenda, Kisla, & Palmer, 2016). Climate change is an example of

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

how environments affect disability and disabled people. Aside from natural
disasters such as flooding, drought, and a geographical redistribution of
disabling diseases, climate change forces people to migrate and take their
conditions with them. Research on the effects of climate change on disability
and economic development has been encouraged by the World Bank but
much work needs to be done in this area. Constructing barriers to the
migration of people will not prevent disease and disability redistribution.
The related fluidity of disability in terms of causes, conditions, and outcomes
is an important matter for research. These musings examine what disability
is, how it is defined, the work that was fundamental to our knowledge on
the topic, and what some of the important issues for future work are.
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Rimmer, J. H., & Marques, A. C. (2012). Physical activity for people with disabilities.
Lancet, 380, 193–195.
Saika, N., Bora, J. K., Jasiloionis, D., & Shkolnikov, V. M. (2016). Disability
divides in India: Evidence from the 2011 census. PLoS One, 11(8), e0159809.
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Shakespeare, T. (2006). Disability rights and wrongs. Abingdon, England: Routledge.
Stiker, H. J. (2013). Corps Infirmes et Societes (3rd. ed.). Paris, France: Dunot.
Srivasta, P., & Kumar, P. (2015). Disability, its issues and challenges: Psychosocial and
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Snyder, S. L., & Mitchell, D. T. (2006). Cultural locations of disability. Chicago, IL: University of Chicago Press.
Solomon, A. (2012). Far from the tree: Parents, children, and the search for identity. New
York, NY: Scribner.
Stargardt, N. (2015). The German war: A nation under arms, 1939–1945. New York, NY:
Basic Books.
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B. Ingstad & S. R. Whyte (Eds.), Disability in local and global worlds (pp. 107–127).
Berkeley: University of California Press.
World Health Organization (2001). ICF: International classification of functioning, disability and health. Geneva, Switzerland: World Health Organization.
World Health Organization (2011). World report on disability. Geneva, Switzerland:
WHO and the World Bank.
Zola, I. K. (1982). Missing pieces: A chronicle of living with a disability. Philadelphia, PA:
Temple University Press.
Zola, I. K. (1989). The necessary universalizing of a disability policy. Milbank Quarterly, 2(Pt 2), 401–428.
Zuurmond, M., Nyapera, V., Mwenda, V., Kisla, J., & Palmer, J. (2016). Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting. African Journal of Disability, 5, 1–8.

GARY L. ALBRECHT SHORT BIOGRAPHY
Gary L. Albrecht is a Fellow of the Royal Belgian Academy of Arts and
Sciences, Extraordinary Guest Professor of Social Sciences, University of Leuven, Belgium, and Professor Emeritus of Public Health and of Disability and
Human Development at the University of Illinois at Chicago. After receiving his PhD from Emory University, he has served on the faculties of Emory
University in Sociology and Psychiatry, Northwestern University in Sociology, Rehabilitation Medicine, and the Kellogg School of Management and the
University of Illinois at Chicago (UIC) in the School of Public Health and in
the Department of Disability and Human Development. Since retiring from
the UIC in 2005, he divides his time between Europe and the United States.
He works in Boulder, Colorado, and Brussels, Belgium. He was recently a
Scholar in Residence at the Maison des Sciences de l’Homme (MSH) in Paris,
a Visiting Fellow at Nuffield College, the University of Oxford, and a Fellow
in Residence at the Royal Flemish Academy of Science and Arts, Brussels.

Disability in a Global Context

13

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(Sociology), Andreas Diekmann
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Disability in a Global Context∗
GARY L. ALBRECHT

Abstract
Disability is a condition that directly involves over 15% of the global population with
reverberations throughout every nation and level of society. The World Bank, World
Health Organization, and Gates Foundation emphasize that this population has serious social and economic effects on the stability and development of nations and
well-being of individuals touched by disability. This essay places disability in a global
context and details the foundational work in the field. Cutting edge research combining biomedical advances, smartphone and computer technology, robotics, artificial
intelligence and analysis of social networks and cultural contexts, disability activism
and agency, and physical, social, political, and economic environments are examined. Looking to the future, the essay explores the consequences of global population
growth, migration, environmental changes, and increased demand for services and
technological innovation on the world’s disabled population, their social networks,
and nations. Lastly, the importance of exploring global disability in all areas of the
world while being open to similarities and differences is emphasized.

DISABILITY IN A GLOBAL CONTEXT
Disability is a condition universally found around the world in all segments
of society but not always recognized, accepted, or understood. For many, disability is seen as something disgraceful, abnormal, or different—something
to be ignored or avoided. Yet, most individuals will personally experience
disability in their lifetimes, deal with disabled family members, or confront
people with disabilities at school, work, and in public spaces. In a joint effort
to better understand disability on a global scale, the World Health Organization (WHO) and the World Bank produced the World Report on Disability
(World Health Organization, 2011) that estimated, based on nationally representative data sets from 59 countries, that about 15% of the world’s population or more than a billion people live with some form of disability. For each
person with a disability, many others in their families and social networks are
∗ This essay was supported in part by a fellowship from the Royal Academies for Science and the Arts
of Belgium.

Emerging Trends in the Social and Behavioral Sciences.
Robert Scott and Marlis Buchmann (General Editors) with Stephen Kosslyn (Consulting Editor).
© 2017 John Wiley & Sons, Inc. ISBN 978-1-118-90077-2.

1

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

affected. These numbers are likely to increase as the world’s population was
7 billion in 2011, is 7.5 billion in 2017, and is projected to be about 10 billion
in 2050 (United Nations, Populations Division, 2017).
In a more granulated view of disability distribution and consequences,
the Global Burden of Disease Study (Global Burden of Disease 2015 DALYS
and HALE Collaborators, 2016) frequently reports on disability-adjusted
life years, increased healthy life expectancy, and how these factors relate to
national development based on data from 188 countries. Among many consequences, disability has a significant effect on the economic well-being of
individuals, families, social welfare systems, and global development. What
is equally important is that the assessment of disability distribution and
consequences is an organic, real-time exercise due to the emergence of new
conditions such as HIV/AIDS, ongoing and new wars, increased numbers
of refugees, malnutrition due to drought, increased migration of diseases
such as Zika, and lack of effective control over increases in such conditions
as obesity, diabetes, smoking, and degradation of the environment. For these
reasons, disability cannot be easily avoided, walled off, or ignored.
FOUNDATIONAL RESEARCH
Most of the foundational research on disability is Western centric and
medical model oriented. Disability is a complex concept difficult to measure
(Altman, 2016). Disabilities can be physical, mental, emotional, sensory, and
intellectual. Often individuals with disabilities have multiple disabilities.
Disabilities can also originate at birth or occur later in life. Furthermore,
impairments and the resulting disability can be episodic such as bouts of
depression, migraine headaches or pain, or persistent conditions such as
spinal cord injuries and permanent brain damage from a traumatic accident.
Initially, disability was defined and measured in terms of physical and
mental anomalies that were deemed to limit “capacity to perform” or “loss
of function.” In the United States, for persons with a disability to receive
disability benefits, they had to be certified by a physician that they had
a medical condition that limited them or prevented them from working
(Albrecht, 1992). The WHO had long been concerned with the international
classification of diseases and subsequently with functioning and disability
associated with health conditions (International Classification of Functioning, Disability and Health). Both classification schemes begin with body
systems but the ICF concentrated on (i) body functions and structures and
(ii) activities and participation (World Health Organization, 2001).
A significant reorientation to disability occurred when social scientists
pointed out in their research that disability can be a socially constructed concept and that activity limitation and participation can be seriously shaped

Disability in a Global Context

3

by an individual’s physical, social, economic, and political environment.
Goffman’s (1961) Asylums, Scott’s (1969) the Making of Blind Men and the
early work in environmental psychology, which argued that social context
and place influenced behavior, grounded this perspective. This work, along
with that of Nagi (1965) and Zola (1989) in the United States and Barnes
(1991) and Shakespeare (2006) in the United Kingdom developed into the
social model of disability. As a result, WHO reconceptualized the concept
of disability and how it should be measured. This is reflected in its biopsychosocial model, which is more inclusive than that of just medicine where
“disability is the umbrella term for impairments, activity limitations and
participation restrictions, referring to the negative aspects of the interaction
between an individual (with a health condition) and that individual’s
contextual factors (environmental and personal factors)” (World Health
Organization, 2011, p. 4). Thus, disability is now viewed as a result of the
interaction between individuals with all of their characteristics and their
physical, social, economic, and cultural environments.
The work of the WHO, World Bank, Centers for Disease Control (CDC),
and the Ford and Gates Foundations in diverse corners of the world have
drawn attention to the fact that disability is distributed globally and can
affect health, migration, and economic well-being at remarkable distances
(Devlieger & Strickfaden, 2016). In a global economy, disability in the labor
force in one part of the world results in productivity losses and places considerable strain on welfare systems along global production and distribution
chains (Gifford, 2017).
Disability was historically addressed in Western countries medically
through the growth of rehabilitation medicine and adjunct interventions
such as physical and occupational therapies. During and after WW I
and WW II, the Veterans Administration and Vocational Rehabilitation
Administration were formed to assist disabled military personnel recover
and hopefully return to the labor force. The Vocational Rehabilitation
Administration extended this concept to persons in the domestic labor force
who were disabled on the job (Gritzer & Arluke, 1985).
Social and behavioral scientists in the 1960s and 1970s recognized that
disability was much more than a medical or disease problem and indeed
affected all areas of human activity. Within the American Psychological
Association, an interest section was formed around rehabilitation psychology. A group of sociologists in the 1970s developed interest sections in
social science organizations that grew to become the Society for Disability
Studies. Later in the process, scholars in the humanities, history, arts and
literature joined the Disability Studies movement to explore how disability
is represented in culture and society (Davis, 2014). The CDC built on its
historical strengths in epidemiology to ask questions about how disability

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fits into a public health perspective where emphasis in on the conditions and
environments that produce disability. Some examples are present initiatives
in smoking prevention, preventing and controlling obesity, encouraging
“healthy” diets including fruits and vegetables, and incorporating consistent
exercise into daily life styles. In this context, disability became a central
focus of those movements that encourage healthy living, sports and physical
activity, walking, and climbing stairs in our everyday lives (Rimmer &
Marques, 2012).
As these movements took shape, an additional social movement characterized by the saying “Nothing About Us, Without Us” united activists and
human rights advocates. People with disabilities did not want to be treated
as dependent and closeted individuals but as active agents in their own rehabilitation and daily lives. Disabled people, particularly academics, advocated
for having a say in their lives. They focused on “breaking down barriers” to
full inclusion in society, which included mainstreaming students in the classroom, the rights to work, bear children, and vote, modification of the physical
environment with curb cuts, power-assisted doors, ramps in place of stairs,
and accessible bathrooms and kitchens (Linton, 2007). While the battle goes
on, these movements resulted in the Americans with Disabilities Act of 1992,
which was imitated by many other nations in the world, and the UN Declaration of the Rights for Disabled People, which recognizes their rights as
citizens of countries and the world.
CUTTING EDGE RESEARCH
In the medical and health arena, enormous research strides have been
made in combining advances in imaging, genetics, biomarkers, nano-sized
medicines and interventions, computer-controlled prostheses, “smart”
houses that can recognize through computer sensors the needs and adjustments that residents desire, and accessible, community-based transportation
that allows persons with disabilities to get out and about, to be as independent as possible and have control of their own lives. The advances in
smartphone technology and apps have given agency back to people with
disabilities (Trevisan, 2016). They are better equipped to organize their lives,
stay in touch with family, friends, and personal assistants, and summon
health care when needed. As a consequence, disabled people are able to
live independently in the community as was not possible before. These
insights into the daily lives and desires of people with disabilities have
also had a significant impact on understanding aging, permitting older
people to live independently, and yet be in contact with support services
when needed. The artificial intelligence technology behind voice-activated
software, self-driving cars, aids in increasing compliance to take necessary

Disability in a Global Context

5

medications, engaging in therapeutic exercise, and organizing and managing one’s life all contribute to increasing the level of independence for
disabled and elderly people.
In the social arena, the concept and development of social networks has
added to our understanding of how humans function in complex social
worlds and how to organize lives and produce aids that will improve the
quality of lives of individuals and their communities. The theoretical and
empirical advances in understanding and utilizing social networks allows
health care teams and disabled people and their families and friendship
groups to integrate information and care to produce a support system that
is centered on the person with disability. As Christakis and Fowler (2011)
pointed out in Connected, we are keenly affected by our social environment.
We are likely to behave like those that are in our social networks and
neighborhoods. These insights have deep implications for how people
become disabled, whom they relate to, how they deal with their disabilities,
how they live their lives, and how much agency they exercise in their daily
lives (Albrecht, Devlieger, & Van Hove, 2009). The power of networks
builds on the earlier work of Zola, the community housing of L’Arche
and the Independent Living Movement designed to keep disabled people
in the community by building communities where they can live together
independently in a supportive environment (Zola, 1982).
The wide use of social media helps people with disabilities stay connected
to the health and social service community, family, and friends in ways not
imagined 20 years ago. Individuals can use the internet, data bases, outcomes research, and discussion groups to learn about their conditions, inform
their decisions, and seek support. The use of social media in conjunction
with computerized information systems also allows people with disabilities
to navigate the complexities of the health, insurance, and benefits worlds
and better to ensure that they are taking advantage of the resources available to them. These efforts generally result in an improved quality of care at
lower prices. People with disabilities are able to unite and do comparative
shopping.
Disability activists are also in a much stronger position to advocate for
their interests and become internationally visible. The change from compliant, fairly uniform, or even undiagnosed “patients” to highly visible,
informed, and organized groups lobbying and intervening on the part
of disabled people and their families is stunning (Iriate, McConkey, &
Gilligan, 2015). Disability activists have helped to insure that the public,
politicians, and government bureaucrats are aware of their existence, needs,
and demands (Nakamura, 2013). These activists have made their presence
known through the United Nations, European Union, Americans with
Disabilities Act, Special Olympics, and a host of cultural events in which

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

people with disabilities are the central characters in plays, novels, media
stories about disabled immigrants, and the effects of displacement, drought,
and war.
Scholars in the arts and humanities have added to the discussion of
disability by examining how disability has been understood and portrayed
across history and culture. For much of history people with disabilities were
hidden from view unless they had special privilege (Stiker (2013). Snyder
and Mitchell (2006) show how people with disabilities were viewed as
biologically deviant and as not “normal.” Society saw them as “defective”
and subject to laws of eugenics, which during the age of the Nazi’s, for
example, made them undesirable and the object of regulations, which for
many meant isolation in camps or even death in the eugenics movement
during WW II. In a careful historical analysis, Stargardt (2015) points out
that more disabled people were eliminated by lethal injections or in the
crematoria than native German Jews. Under this type of regime, people
with disabilities were to be identified and regulated, which still resonates
in some levels of society around the world today (Weiss, 2007). They and
others, such as Erickson (1966) in The Wayward Puritans point out how
disabled people have fought a long battle in charting a passage from living
in a disciplinary society to one based on acceptance and self-regulation.
Classic books in this tradition, such as Charlton’s (1998) Nothing About Us
Without Us, Frank’s (1995) The Wounded Storyteller, and Frank’s (2000) Venus
on Wheels, take the point of view of individuals reaching out to redefine
themselves in the larger society. Iezzoni and O’Day (2006) go further arguing
that inclusion and accessibility involves more than building ramps and
improving access to the present health care system. True inclusion means
cultural acceptance and access to services and civil liberties enjoyed by the
larger population.
This leads us to considering fitting people with disabilities to their physical,
social, and cultural environments. Rather than taking the present as a given,
contemporary scholars and researchers examine how to build a physical and
social environment that is welcoming to people with differences, including
disabled people. These issues and accomplishments take us into a society in
which all citizens are accepted in their richness and difference. At the core,
these debates are about who is human, a citizen, has fundamental rights and
is accepted into the larger society (Bloemraad, Korteweg, & Yurdakul, 2008).
LOOKING AHEAD: KEY ISSUES FOR FUTURE RESEARCH
The issues on the horizon repeat those seen earlier in history and add
a current stage of urgency to the place of disabled people in society.
Looking ahead to 2050, world demographic trends demand a close watch by

Disability in a Global Context

7

researchers and increase pressure on disability policy makers and activists.
During this period, the world population will grow to almost 10 billion
people, life expectancy will most likely continue to increase because of
better public health, and more countries will implement national health
care systems. The absolute numbers of people with disabilities will increase,
placing increased economic and service strains on national, medical, and
social welfare systems. The complexity of the changes is critical to understand and plan for (Coleman, 2006). Population growth in the EU, Japan
and the United States, Canada, Australia, and New Zealand will be less
than at a replacement rate while that of Africa and some Asian and South
American countries will continue to increase above replacement rates. As a
result, the young labor force needed in the job markets of many developed
countries to generate GDP (gross national product) and care for the aging
populations will have to come from immigrants or from a massive program
of robot assistants and use of artificial intelligence. Even if this is the case,
governments or perhaps public/private partnerships will have to plan
for, fund, and operate these systems. The world population growth in the
next 30 years most likely implies a concomitant increase of the numbers of
disabled people distributed globally (Saika, Bora, Jasiloionis, & Shkolnikov,
2016). The thorny part of this demographic scenario is that at the time that
many developed countries are becoming more nationalistic and inward
looking, they will need a younger labor force to keep GDP growing and
considerable numbers of service workers to care for an aging population
and increased numbers of disabled people. Researchers at the Global Burden
of Disease project and the Gates Foundation are aware of these issues but
more work needs to be done worldwide to monitor and respond to these
problems. Furthermore, researchers can produce data and make informed
forecasts about the future but the public and politicians need to be educated
to work from real data and outcomes research. This has caused considerable
concern among scientists who see that social policies and political actors are
not always receptive to scientific evidence. There is a cost to not responding
to impending demographic changes.
A second set of research efforts would redirect the traditional perspective
from the disabled individual to social networks and social relationships.
Disabled people do not live in isolation or just with other disabled people
but in a society where they deeply touch the lives of their family members,
spouses, friends, neighbors, and coworkers. From this perspective, people
who interact with disabled people often become “co-owners” of the conditions and challenges they pose. Since this produces a multiplier effect,
in all likelihood up to a third of the world’s population is in some manner
impacted directly or indirectly by disability. Yet this raises a paradox. How
can it be that conditions that are so common are seen as rare? For most

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

people, disability is not of personal concern until it happens to them or
someone close to them. Past analyses of disability have profited from the
concepts of shame, stigma, and marginality to explain how people with
disabilities do not make it to the center stage of life nor merit prolonged
attention.
In contemporary life, there is considerable migration from rural communities to urban metropolises. In the digital revolution, transactions take place
not face to face in a community but anonymously over the internet. Social
media permit contact to be depersonalized without sight, sound, smell, or
context. Twitter allows complex ideas to be reduced to 140 characters and texting encourages emotions to be expressed by emojis. On Facebook, a central
controlling concept is being “friended.” What does this sort of “friending”
mean for an elderly parent or disabled person rather than a personal visit or
joining family and community events in person?
The rise of artificial intelligence in human service industries ranging from
assisting physicians diagnose and treat complex conditions to planning
and monitoring complex treatment plans and medication compliance by
electronic sensors adds to this sense of loss of control, oversimplification
of emotionally laden experiences, and being “distanced” where one is
out of sight and mind. The consequences for their quality of life are discouraging. In discussing “difference” in society, Solomon (2012) concludes
that intimacy with different people and conditions fosters understanding,
acceptance, and accommodation. Yet this does not happen being isolated
in homogeneous groups, being emotionally “distanced,” treated as a case
in a computer algorithm, or rejected if unable to meet the norms of others.
These issues bear upon disabled people as well as the larger society and cry
out for analysis and solutions to reintegrate “different” people into a larger
society.
The next set of future research issues regard the use of emergent technology
pertaining to disability. At a time when robots are likely to replace workers in manufacturing industries and artificial intelligence systems are taking
over much of the work in the service industries, where will people finds jobs
(Friedman, 2016)? Typically, most workers that care for disabled people are in
low-paying jobs. The people most agreeable to working in these jobs for these
salaries are minorities and immigrants. Yet, the demand for services comes at
a time when we are preventing and drastically controlling immigration and
not well educating minorities for jobs of the future.
Japan is responding to these problems by developing personal care
robots to support persons with disability and older people. While there are
promises in this direction, there is also the issue of human support. Are
disabled people and the elderly content with just dealing with robots and
artificial intelligence supports or do they need more human and emotional

Disability in a Global Context

9

contact to have physical, emotional, and mental well-being? These issues
require research.
Research on the body will expand in breadth and depth. There is a strong
tradition on the sociology of the body, psychological work on brain–body
interactions, exciting work on the regeneration of tissue and limbs, replacement of body parts and cognitive-computer interfaces. Future work will combine what we know about the body, computers, artificial parts, medicine, and
biology in producing integrated work where these different advances can be
combined to prevent disabling conditions and improve the daily functioning
and well-being of disabled people (Kurzweil, 2005).
Our understanding of disability has been very Western centric. A large
and disparate body of research is coming from developing countries and the
Southern Hemisphere (Grech & Soldatic, 2016). In the past, we have typically taken Western models and understandings of disability and imposed
them on studies and service systems in other parts of the world when, in fact,
there is much to be learned from how others define, interpret, and respond
to disability (Booyens, Van Pietzen, & Lorenzo, 2015). Types of disability and
responses to them differ by culture and country (Elo, Mehta, & Huang, 2011).
For instance, in Africa and Asia people with disabilities such as blindness
and cognitive impairments are seen to have special powers or to be avoided.
A woman from Zambia was thought to be dangerous and a witch because
she had epileptic seizures (Albrecht, Devlieger, & Van Hove, 2008). Others
are seen to be socially useful in business transactions. Spinal cord injured
men in Kinshasa who used wheel chairs were seen as a valuable asset in business because, by local laws, they could transit the Congo River and on their
way take goods back and forth between Kinshasa and Brazzaville. This facilitated local commerce (Devlieger & Nieme, 2011). In another example, the
meanings and treatment of leprosy have changed and evolved so that today
the disease is seen and treated differently in South Africa, Indonesia, and
Hawaii. Even in one country, such as the United States, there is considerable
discussion and conflict about what to do with the Pere Damien Leper Colony
on the Island of Molokai (Devlieger, 2016). Likewise, becoming disabled in a
conflict zone has different meanings than becoming disabled in an auto accident. The point is that there is much to be learned by doing field work across
to world to supplement the knowledge of disability that we have from large,
international surveys and pooled data from health care facilities.
By definition and as observed in field work, the physical, social, economic,
and political environment has tremendous influence on how people acquire
disabilities and how they to respond to them (Altman & Barnhardt, 2014).
We need to know much more about the interplay between people with
disabilities and their environments (Srivasta & Kumar, 2015; Zuurmond,
Nyapera, Mwenda, Kisla, & Palmer, 2016). Climate change is an example of

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

how environments affect disability and disabled people. Aside from natural
disasters such as flooding, drought, and a geographical redistribution of
disabling diseases, climate change forces people to migrate and take their
conditions with them. Research on the effects of climate change on disability
and economic development has been encouraged by the World Bank but
much work needs to be done in this area. Constructing barriers to the
migration of people will not prevent disease and disability redistribution.
The related fluidity of disability in terms of causes, conditions, and outcomes
is an important matter for research. These musings examine what disability
is, how it is defined, the work that was fundamental to our knowledge on
the topic, and what some of the important issues for future work are.
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GARY L. ALBRECHT SHORT BIOGRAPHY
Gary L. Albrecht is a Fellow of the Royal Belgian Academy of Arts and
Sciences, Extraordinary Guest Professor of Social Sciences, University of Leuven, Belgium, and Professor Emeritus of Public Health and of Disability and
Human Development at the University of Illinois at Chicago. After receiving his PhD from Emory University, he has served on the faculties of Emory
University in Sociology and Psychiatry, Northwestern University in Sociology, Rehabilitation Medicine, and the Kellogg School of Management and the
University of Illinois at Chicago (UIC) in the School of Public Health and in
the Department of Disability and Human Development. Since retiring from
the UIC in 2005, he divides his time between Europe and the United States.
He works in Boulder, Colorado, and Brussels, Belgium. He was recently a
Scholar in Residence at the Maison des Sciences de l’Homme (MSH) in Paris,
a Visiting Fellow at Nuffield College, the University of Oxford, and a Fellow
in Residence at the Royal Flemish Academy of Science and Arts, Brussels.

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Disability in a Global Context∗
GARY L. ALBRECHT

Abstract
Disability is a condition that directly involves over 15% of the global population with
reverberations throughout every nation and level of society. The World Bank, World
Health Organization, and Gates Foundation emphasize that this population has serious social and economic effects on the stability and development of nations and
well-being of individuals touched by disability. This essay places disability in a global
context and details the foundational work in the field. Cutting edge research combining biomedical advances, smartphone and computer technology, robotics, artificial
intelligence and analysis of social networks and cultural contexts, disability activism
and agency, and physical, social, political, and economic environments are examined. Looking to the future, the essay explores the consequences of global population
growth, migration, environmental changes, and increased demand for services and
technological innovation on the world’s disabled population, their social networks,
and nations. Lastly, the importance of exploring global disability in all areas of the
world while being open to similarities and differences is emphasized.

DISABILITY IN A GLOBAL CONTEXT
Disability is a condition universally found around the world in all segments
of society but not always recognized, accepted, or understood. For many, disability is seen as something disgraceful, abnormal, or different—something
to be ignored or avoided. Yet, most individuals will personally experience
disability in their lifetimes, deal with disabled family members, or confront
people with disabilities at school, work, and in public spaces. In a joint effort
to better understand disability on a global scale, the World Health Organization (WHO) and the World Bank produced the World Report on Disability
(World Health Organization, 2011) that estimated, based on nationally representative data sets from 59 countries, that about 15% of the world’s population or more than a billion people live with some form of disability. For each
person with a disability, many others in their families and social networks are
∗ This essay was supported in part by a fellowship from the Royal Academies for Science and the Arts
of Belgium.

Emerging Trends in the Social and Behavioral Sciences.
Robert Scott and Marlis Buchmann (General Editors) with Stephen Kosslyn (Consulting Editor).
© 2017 John Wiley & Sons, Inc. ISBN 978-1-118-90077-2.

1

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

affected. These numbers are likely to increase as the world’s population was
7 billion in 2011, is 7.5 billion in 2017, and is projected to be about 10 billion
in 2050 (United Nations, Populations Division, 2017).
In a more granulated view of disability distribution and consequences,
the Global Burden of Disease Study (Global Burden of Disease 2015 DALYS
and HALE Collaborators, 2016) frequently reports on disability-adjusted
life years, increased healthy life expectancy, and how these factors relate to
national development based on data from 188 countries. Among many consequences, disability has a significant effect on the economic well-being of
individuals, families, social welfare systems, and global development. What
is equally important is that the assessment of disability distribution and
consequences is an organic, real-time exercise due to the emergence of new
conditions such as HIV/AIDS, ongoing and new wars, increased numbers
of refugees, malnutrition due to drought, increased migration of diseases
such as Zika, and lack of effective control over increases in such conditions
as obesity, diabetes, smoking, and degradation of the environment. For these
reasons, disability cannot be easily avoided, walled off, or ignored.
FOUNDATIONAL RESEARCH
Most of the foundational research on disability is Western centric and
medical model oriented. Disability is a complex concept difficult to measure
(Altman, 2016). Disabilities can be physical, mental, emotional, sensory, and
intellectual. Often individuals with disabilities have multiple disabilities.
Disabilities can also originate at birth or occur later in life. Furthermore,
impairments and the resulting disability can be episodic such as bouts of
depression, migraine headaches or pain, or persistent conditions such as
spinal cord injuries and permanent brain damage from a traumatic accident.
Initially, disability was defined and measured in terms of physical and
mental anomalies that were deemed to limit “capacity to perform” or “loss
of function.” In the United States, for persons with a disability to receive
disability benefits, they had to be certified by a physician that they had
a medical condition that limited them or prevented them from working
(Albrecht, 1992). The WHO had long been concerned with the international
classification of diseases and subsequently with functioning and disability
associated with health conditions (International Classification of Functioning, Disability and Health). Both classification schemes begin with body
systems but the ICF concentrated on (i) body functions and structures and
(ii) activities and participation (World Health Organization, 2001).
A significant reorientation to disability occurred when social scientists
pointed out in their research that disability can be a socially constructed concept and that activity limitation and participation can be seriously shaped

Disability in a Global Context

3

by an individual’s physical, social, economic, and political environment.
Goffman’s (1961) Asylums, Scott’s (1969) the Making of Blind Men and the
early work in environmental psychology, which argued that social context
and place influenced behavior, grounded this perspective. This work, along
with that of Nagi (1965) and Zola (1989) in the United States and Barnes
(1991) and Shakespeare (2006) in the United Kingdom developed into the
social model of disability. As a result, WHO reconceptualized the concept
of disability and how it should be measured. This is reflected in its biopsychosocial model, which is more inclusive than that of just medicine where
“disability is the umbrella term for impairments, activity limitations and
participation restrictions, referring to the negative aspects of the interaction
between an individual (with a health condition) and that individual’s
contextual factors (environmental and personal factors)” (World Health
Organization, 2011, p. 4). Thus, disability is now viewed as a result of the
interaction between individuals with all of their characteristics and their
physical, social, economic, and cultural environments.
The work of the WHO, World Bank, Centers for Disease Control (CDC),
and the Ford and Gates Foundations in diverse corners of the world have
drawn attention to the fact that disability is distributed globally and can
affect health, migration, and economic well-being at remarkable distances
(Devlieger & Strickfaden, 2016). In a global economy, disability in the labor
force in one part of the world results in productivity losses and places considerable strain on welfare systems along global production and distribution
chains (Gifford, 2017).
Disability was historically addressed in Western countries medically
through the growth of rehabilitation medicine and adjunct interventions
such as physical and occupational therapies. During and after WW I
and WW II, the Veterans Administration and Vocational Rehabilitation
Administration were formed to assist disabled military personnel recover
and hopefully return to the labor force. The Vocational Rehabilitation
Administration extended this concept to persons in the domestic labor force
who were disabled on the job (Gritzer & Arluke, 1985).
Social and behavioral scientists in the 1960s and 1970s recognized that
disability was much more than a medical or disease problem and indeed
affected all areas of human activity. Within the American Psychological
Association, an interest section was formed around rehabilitation psychology. A group of sociologists in the 1970s developed interest sections in
social science organizations that grew to become the Society for Disability
Studies. Later in the process, scholars in the humanities, history, arts and
literature joined the Disability Studies movement to explore how disability
is represented in culture and society (Davis, 2014). The CDC built on its
historical strengths in epidemiology to ask questions about how disability

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fits into a public health perspective where emphasis in on the conditions and
environments that produce disability. Some examples are present initiatives
in smoking prevention, preventing and controlling obesity, encouraging
“healthy” diets including fruits and vegetables, and incorporating consistent
exercise into daily life styles. In this context, disability became a central
focus of those movements that encourage healthy living, sports and physical
activity, walking, and climbing stairs in our everyday lives (Rimmer &
Marques, 2012).
As these movements took shape, an additional social movement characterized by the saying “Nothing About Us, Without Us” united activists and
human rights advocates. People with disabilities did not want to be treated
as dependent and closeted individuals but as active agents in their own rehabilitation and daily lives. Disabled people, particularly academics, advocated
for having a say in their lives. They focused on “breaking down barriers” to
full inclusion in society, which included mainstreaming students in the classroom, the rights to work, bear children, and vote, modification of the physical
environment with curb cuts, power-assisted doors, ramps in place of stairs,
and accessible bathrooms and kitchens (Linton, 2007). While the battle goes
on, these movements resulted in the Americans with Disabilities Act of 1992,
which was imitated by many other nations in the world, and the UN Declaration of the Rights for Disabled People, which recognizes their rights as
citizens of countries and the world.
CUTTING EDGE RESEARCH
In the medical and health arena, enormous research strides have been
made in combining advances in imaging, genetics, biomarkers, nano-sized
medicines and interventions, computer-controlled prostheses, “smart”
houses that can recognize through computer sensors the needs and adjustments that residents desire, and accessible, community-based transportation
that allows persons with disabilities to get out and about, to be as independent as possible and have control of their own lives. The advances in
smartphone technology and apps have given agency back to people with
disabilities (Trevisan, 2016). They are better equipped to organize their lives,
stay in touch with family, friends, and personal assistants, and summon
health care when needed. As a consequence, disabled people are able to
live independently in the community as was not possible before. These
insights into the daily lives and desires of people with disabilities have
also had a significant impact on understanding aging, permitting older
people to live independently, and yet be in contact with support services
when needed. The artificial intelligence technology behind voice-activated
software, self-driving cars, aids in increasing compliance to take necessary

Disability in a Global Context

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medications, engaging in therapeutic exercise, and organizing and managing one’s life all contribute to increasing the level of independence for
disabled and elderly people.
In the social arena, the concept and development of social networks has
added to our understanding of how humans function in complex social
worlds and how to organize lives and produce aids that will improve the
quality of lives of individuals and their communities. The theoretical and
empirical advances in understanding and utilizing social networks allows
health care teams and disabled people and their families and friendship
groups to integrate information and care to produce a support system that
is centered on the person with disability. As Christakis and Fowler (2011)
pointed out in Connected, we are keenly affected by our social environment.
We are likely to behave like those that are in our social networks and
neighborhoods. These insights have deep implications for how people
become disabled, whom they relate to, how they deal with their disabilities,
how they live their lives, and how much agency they exercise in their daily
lives (Albrecht, Devlieger, & Van Hove, 2009). The power of networks
builds on the earlier work of Zola, the community housing of L’Arche
and the Independent Living Movement designed to keep disabled people
in the community by building communities where they can live together
independently in a supportive environment (Zola, 1982).
The wide use of social media helps people with disabilities stay connected
to the health and social service community, family, and friends in ways not
imagined 20 years ago. Individuals can use the internet, data bases, outcomes research, and discussion groups to learn about their conditions, inform
their decisions, and seek support. The use of social media in conjunction
with computerized information systems also allows people with disabilities
to navigate the complexities of the health, insurance, and benefits worlds
and better to ensure that they are taking advantage of the resources available to them. These efforts generally result in an improved quality of care at
lower prices. People with disabilities are able to unite and do comparative
shopping.
Disability activists are also in a much stronger position to advocate for
their interests and become internationally visible. The change from compliant, fairly uniform, or even undiagnosed “patients” to highly visible,
informed, and organized groups lobbying and intervening on the part
of disabled people and their families is stunning (Iriate, McConkey, &
Gilligan, 2015). Disability activists have helped to insure that the public,
politicians, and government bureaucrats are aware of their existence, needs,
and demands (Nakamura, 2013). These activists have made their presence
known through the United Nations, European Union, Americans with
Disabilities Act, Special Olympics, and a host of cultural events in which

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

people with disabilities are the central characters in plays, novels, media
stories about disabled immigrants, and the effects of displacement, drought,
and war.
Scholars in the arts and humanities have added to the discussion of
disability by examining how disability has been understood and portrayed
across history and culture. For much of history people with disabilities were
hidden from view unless they had special privilege (Stiker (2013). Snyder
and Mitchell (2006) show how people with disabilities were viewed as
biologically deviant and as not “normal.” Society saw them as “defective”
and subject to laws of eugenics, which during the age of the Nazi’s, for
example, made them undesirable and the object of regulations, which for
many meant isolation in camps or even death in the eugenics movement
during WW II. In a careful historical analysis, Stargardt (2015) points out
that more disabled people were eliminated by lethal injections or in the
crematoria than native German Jews. Under this type of regime, people
with disabilities were to be identified and regulated, which still resonates
in some levels of society around the world today (Weiss, 2007). They and
others, such as Erickson (1966) in The Wayward Puritans point out how
disabled people have fought a long battle in charting a passage from living
in a disciplinary society to one based on acceptance and self-regulation.
Classic books in this tradition, such as Charlton’s (1998) Nothing About Us
Without Us, Frank’s (1995) The Wounded Storyteller, and Frank’s (2000) Venus
on Wheels, take the point of view of individuals reaching out to redefine
themselves in the larger society. Iezzoni and O’Day (2006) go further arguing
that inclusion and accessibility involves more than building ramps and
improving access to the present health care system. True inclusion means
cultural acceptance and access to services and civil liberties enjoyed by the
larger population.
This leads us to considering fitting people with disabilities to their physical,
social, and cultural environments. Rather than taking the present as a given,
contemporary scholars and researchers examine how to build a physical and
social environment that is welcoming to people with differences, including
disabled people. These issues and accomplishments take us into a society in
which all citizens are accepted in their richness and difference. At the core,
these debates are about who is human, a citizen, has fundamental rights and
is accepted into the larger society (Bloemraad, Korteweg, & Yurdakul, 2008).
LOOKING AHEAD: KEY ISSUES FOR FUTURE RESEARCH
The issues on the horizon repeat those seen earlier in history and add
a current stage of urgency to the place of disabled people in society.
Looking ahead to 2050, world demographic trends demand a close watch by

Disability in a Global Context

7

researchers and increase pressure on disability policy makers and activists.
During this period, the world population will grow to almost 10 billion
people, life expectancy will most likely continue to increase because of
better public health, and more countries will implement national health
care systems. The absolute numbers of people with disabilities will increase,
placing increased economic and service strains on national, medical, and
social welfare systems. The complexity of the changes is critical to understand and plan for (Coleman, 2006). Population growth in the EU, Japan
and the United States, Canada, Australia, and New Zealand will be less
than at a replacement rate while that of Africa and some Asian and South
American countries will continue to increase above replacement rates. As a
result, the young labor force needed in the job markets of many developed
countries to generate GDP (gross national product) and care for the aging
populations will have to come from immigrants or from a massive program
of robot assistants and use of artificial intelligence. Even if this is the case,
governments or perhaps public/private partnerships will have to plan
for, fund, and operate these systems. The world population growth in the
next 30 years most likely implies a concomitant increase of the numbers of
disabled people distributed globally (Saika, Bora, Jasiloionis, & Shkolnikov,
2016). The thorny part of this demographic scenario is that at the time that
many developed countries are becoming more nationalistic and inward
looking, they will need a younger labor force to keep GDP growing and
considerable numbers of service workers to care for an aging population
and increased numbers of disabled people. Researchers at the Global Burden
of Disease project and the Gates Foundation are aware of these issues but
more work needs to be done worldwide to monitor and respond to these
problems. Furthermore, researchers can produce data and make informed
forecasts about the future but the public and politicians need to be educated
to work from real data and outcomes research. This has caused considerable
concern among scientists who see that social policies and political actors are
not always receptive to scientific evidence. There is a cost to not responding
to impending demographic changes.
A second set of research efforts would redirect the traditional perspective
from the disabled individual to social networks and social relationships.
Disabled people do not live in isolation or just with other disabled people
but in a society where they deeply touch the lives of their family members,
spouses, friends, neighbors, and coworkers. From this perspective, people
who interact with disabled people often become “co-owners” of the conditions and challenges they pose. Since this produces a multiplier effect,
in all likelihood up to a third of the world’s population is in some manner
impacted directly or indirectly by disability. Yet this raises a paradox. How
can it be that conditions that are so common are seen as rare? For most

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

people, disability is not of personal concern until it happens to them or
someone close to them. Past analyses of disability have profited from the
concepts of shame, stigma, and marginality to explain how people with
disabilities do not make it to the center stage of life nor merit prolonged
attention.
In contemporary life, there is considerable migration from rural communities to urban metropolises. In the digital revolution, transactions take place
not face to face in a community but anonymously over the internet. Social
media permit contact to be depersonalized without sight, sound, smell, or
context. Twitter allows complex ideas to be reduced to 140 characters and texting encourages emotions to be expressed by emojis. On Facebook, a central
controlling concept is being “friended.” What does this sort of “friending”
mean for an elderly parent or disabled person rather than a personal visit or
joining family and community events in person?
The rise of artificial intelligence in human service industries ranging from
assisting physicians diagnose and treat complex conditions to planning
and monitoring complex treatment plans and medication compliance by
electronic sensors adds to this sense of loss of control, oversimplification
of emotionally laden experiences, and being “distanced” where one is
out of sight and mind. The consequences for their quality of life are discouraging. In discussing “difference” in society, Solomon (2012) concludes
that intimacy with different people and conditions fosters understanding,
acceptance, and accommodation. Yet this does not happen being isolated
in homogeneous groups, being emotionally “distanced,” treated as a case
in a computer algorithm, or rejected if unable to meet the norms of others.
These issues bear upon disabled people as well as the larger society and cry
out for analysis and solutions to reintegrate “different” people into a larger
society.
The next set of future research issues regard the use of emergent technology
pertaining to disability. At a time when robots are likely to replace workers in manufacturing industries and artificial intelligence systems are taking
over much of the work in the service industries, where will people finds jobs
(Friedman, 2016)? Typically, most workers that care for disabled people are in
low-paying jobs. The people most agreeable to working in these jobs for these
salaries are minorities and immigrants. Yet, the demand for services comes at
a time when we are preventing and drastically controlling immigration and
not well educating minorities for jobs of the future.
Japan is responding to these problems by developing personal care
robots to support persons with disability and older people. While there are
promises in this direction, there is also the issue of human support. Are
disabled people and the elderly content with just dealing with robots and
artificial intelligence supports or do they need more human and emotional

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contact to have physical, emotional, and mental well-being? These issues
require research.
Research on the body will expand in breadth and depth. There is a strong
tradition on the sociology of the body, psychological work on brain–body
interactions, exciting work on the regeneration of tissue and limbs, replacement of body parts and cognitive-computer interfaces. Future work will combine what we know about the body, computers, artificial parts, medicine, and
biology in producing integrated work where these different advances can be
combined to prevent disabling conditions and improve the daily functioning
and well-being of disabled people (Kurzweil, 2005).
Our understanding of disability has been very Western centric. A large
and disparate body of research is coming from developing countries and the
Southern Hemisphere (Grech & Soldatic, 2016). In the past, we have typically taken Western models and understandings of disability and imposed
them on studies and service systems in other parts of the world when, in fact,
there is much to be learned from how others define, interpret, and respond
to disability (Booyens, Van Pietzen, & Lorenzo, 2015). Types of disability and
responses to them differ by culture and country (Elo, Mehta, & Huang, 2011).
For instance, in Africa and Asia people with disabilities such as blindness
and cognitive impairments are seen to have special powers or to be avoided.
A woman from Zambia was thought to be dangerous and a witch because
she had epileptic seizures (Albrecht, Devlieger, & Van Hove, 2008). Others
are seen to be socially useful in business transactions. Spinal cord injured
men in Kinshasa who used wheel chairs were seen as a valuable asset in business because, by local laws, they could transit the Congo River and on their
way take goods back and forth between Kinshasa and Brazzaville. This facilitated local commerce (Devlieger & Nieme, 2011). In another example, the
meanings and treatment of leprosy have changed and evolved so that today
the disease is seen and treated differently in South Africa, Indonesia, and
Hawaii. Even in one country, such as the United States, there is considerable
discussion and conflict about what to do with the Pere Damien Leper Colony
on the Island of Molokai (Devlieger, 2016). Likewise, becoming disabled in a
conflict zone has different meanings than becoming disabled in an auto accident. The point is that there is much to be learned by doing field work across
to world to supplement the knowledge of disability that we have from large,
international surveys and pooled data from health care facilities.
By definition and as observed in field work, the physical, social, economic,
and political environment has tremendous influence on how people acquire
disabilities and how they to respond to them (Altman & Barnhardt, 2014).
We need to know much more about the interplay between people with
disabilities and their environments (Srivasta & Kumar, 2015; Zuurmond,
Nyapera, Mwenda, Kisla, & Palmer, 2016). Climate change is an example of

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EMERGING TRENDS IN THE SOCIAL AND BEHAVIORAL SCIENCES

how environments affect disability and disabled people. Aside from natural
disasters such as flooding, drought, and a geographical redistribution of
disabling diseases, climate change forces people to migrate and take their
conditions with them. Research on the effects of climate change on disability
and economic development has been encouraged by the World Bank but
much work needs to be done in this area. Constructing barriers to the
migration of people will not prevent disease and disability redistribution.
The related fluidity of disability in terms of causes, conditions, and outcomes
is an important matter for research. These musings examine what disability
is, how it is defined, the work that was fundamental to our knowledge on
the topic, and what some of the important issues for future work are.
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GARY L. ALBRECHT SHORT BIOGRAPHY
Gary L. Albrecht is a Fellow of the Royal Belgian Academy of Arts and
Sciences, Extraordinary Guest Professor of Social Sciences, University of Leuven, Belgium, and Professor Emeritus of Public Health and of Disability and
Human Development at the University of Illinois at Chicago. After receiving his PhD from Emory University, he has served on the faculties of Emory
University in Sociology and Psychiatry, Northwestern University in Sociology, Rehabilitation Medicine, and the Kellogg School of Management and the
University of Illinois at Chicago (UIC) in the School of Public Health and in
the Department of Disability and Human Development. Since retiring from
the UIC in 2005, he divides his time between Europe and the United States.
He works in Boulder, Colorado, and Brussels, Belgium. He was recently a
Scholar in Residence at the Maison des Sciences de l’Homme (MSH) in Paris,
a Visiting Fellow at Nuffield College, the University of Oxford, and a Fellow
in Residence at the Royal Flemish Academy of Science and Arts, Brussels.

Disability in a Global Context

13

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