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The Disability Community

Disability Statistics

Blind or Visually Impaired

Vincent Van Gogh had…A Visual Disability Essay

D/deaf or Hard of Hearing

Demographics

Cognitive

An Overview of Disability History – In One Exhibition

Models of Disability


Disability Statistics

eye chart and glassesIt is likely that all of us, at one point or another in our lives, will experience a disability. Whether a temporary disability like a broken leg from a skiing accident or a disability that sneaks up on us as we age, such as the need for reading glasses, we will come to understand how having a disability changes the way we perceive and use the environments in which we work, play and live.

In its deliberations on the Americans with Disabilities Act in the early 1990s, Congress cited a figure of 43 million Americans as having one or more physical or mental disabilities. This estimate has been revised to 56.7 million based on recent census data (2010).1 These numbers are broad estimates.

It is clear, however, that the number of people who have disabilities in the American population is large and is growing significantly with the “graying of America.”  In fact, the U.S. Census Bureau’s American Community Survey in 2011 estimated that over 59 million Americans are over the age of 60 2.  By the year 2030, they expect that one in four people will be over the age of 65.

The profile of older people is changing.  People over 65 are healthier, work longer, are more interested in volunteer opportunities and have more resources than in previous generations.  Increasingly, they will become involved in cultural and recreational activities.  Museums must plan for inclusion by providing fully accessible spaces and programs that welcome people of all ages and abilities.

elderly man pushes woman in wheelchairUrban areas in the U.S. have a higher concentration of people with disabilities than rural areas.  For example in Baltimore, Maryland, 19.8% of the population (111,950 our of 566,090) is disabled 3 and New York City reports that 11% of its population (889,219 out of 8.1 million people) is made up of people with disabilities. 4

The incidence of disability rises sharply as individuals reach their sixth and seventh decades of life. The life expectancy of an infant born in America today is approximately 75 years, and by the time that infant reaches the age of 75 that horizon of longevity may well have been pushed back.   At the same time, advances in medical practice such as the development of trauma care centers and treatment of life threatening diseases tend to increase rather than decrease incidence of disability among younger persons.  So it is reasonable to expect that the population of people with disabilities will only continue to increase.  And just as aging Baby Boomers are re-defining  what it means to be middle aged or older — with all of the implications that flow from such a redefinition — the disability rights movement and its supporters are advancing a redefinition of what it means to be disabled in this society in the 21st Century.


1 Brault, Matthew W., “Americans With Disabilities: 2010,” Current Population Reports, P70-131, U.S. Census Bureau, Washington, DC, 2012.

2 U.S. Census Bureau’s American Community Survey, 2011.

3 Data from 2005-2007

4 Center for Independence of the Disabled.  2010. Disability Matters:  Unequal Treatment and the Status of People with Disabilities in New York City and New York State.

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Blind or Visually Impaired

a man wearing dark glasses touches the face of a sculptureVisual impairment describes vision that cannot be fully corrected by ordinary prescription lenses, medical treatment, or surgery. The term visual impairment includes conditions ranging from the presence of good usable vision to low vision or the absence of any sight at all – total blindness. The most common conditions are associated with aging: glaucoma, cataracts, macular degeneration, and diabetic retinopathy. Many terms are used when people refer to visual impairment. These terms are explained below.

Legal Blindness

Legal blindness defines visual conditions that, when present, connote eligibility for government or other benefits and services. An individual who is legally blind has a visual acuity of 20/200 in the better eye with the best correction, or a visual field of no more than 20 degrees.

Severe Visual Impairment

Severe visual impairment is a term used by researchers at the National Center for Health Statistics (NCHS) to describe visual impairment in people who are unable to read ordinary newsprint even with correction. This term is primarily a research term in studies of visual impairment in the population, and not used by eye care professionals in clinical references. People with a severe visual impairment may or may not be legally blind.

Visually Impaired

The term visually impaired is also used by the NCHS for studying visual impairment in the population, and describes visual impairment in people who have difficulty reading ordinary newsprint even with correction. Like the term severe visual impairment, visual impairment is used by researchers who study the population, and is not used in clinical references.

Low Vision

Low vision is a clinical diagnostic term used to describe impaired vision that cannot be improved by conventional eyeglasses, contact lenses, medications, or surgery in which some good usable vision remains. People with low vision can learn to make the best use of the vision available to them.

(Material in this section © American Foundation for the Blind)

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VINCENT VAN GOGH HAD….

Some of the world’s most famous artists had visual impairments. Art Beyond Sight has created a way for you to view paintings of some artists through the lens of their disability. Click on the image below to begin. Then click on a painting and then rollover it with a mouse

visual essay 2
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D/deaf or Hard of Hearing

hand cupped behind earWhen speaking of user ability with regard to hearing, the terms deaf and hard of hearing are the acceptable vocabulary to use. People who have no functional hearing are considered either Deaf (upper case D), or deaf (lower case d), and people who do have some functional hearing are considered hard of hearing; the term hearing impaired is the least appropriate label. The difference between Deaf and deaf is based on linguistics and not on the cause of deafness. A person who is Deaf is part of a very specific subculture of people who use ASL as their means of communication; a person who is deaf is a person who grew up hearing, lost the ability to hear due to illness or injury, and communicates through spoken language. Other distinguishing terminology is culturally Deaf vs. medically deaf.

Culturally Deaf people are part of what is called the Deaf Community, which extends far beyond city or state lines. This bond between individualsHands signing A B C D who are Deaf grows around the use of American Sign Language (ASL) as well as specialized social etiquette, behaviors, and attitudes that emerge and evolve over time. Because of language and communication barriers, the Deaf Community can be very insular. Becoming deaf does not automatically make an individual a part of the Deaf Community, although a person who becomes deaf may choose to learn ASL and try to integrate. Also, many hearing people are included in the Deaf Community. Hearing people who use ASL to communicate with Deaf family or friends, and ASL interpreters are also considered part of the Deaf Community because of the bond through language.

People who are hard of hearing do have some functional hearing, which means they can understand speech and sound with added effort or with assistive devices. For example, it is not uncommon for people who are hard of hearing to use hearing aids or to need others to speak loudly when talking. A person with a cochlear implant is usually considered hard of hearing, although that person may be fully deaf when not wearing the sound processor. Regardless of the severity or nature of deafness and hearing loss, many people struggle to remain socially active as it becomes emotionally difficult and stressful to function in situations where communication barriers prevent active participation in community and cultural activities.

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Demographics

US Census chartWhile extensive sources of demographic information can be found on Internet databases and in various government and independent research publications, statistics related to disability are much more difficult to find. The United States Census does not ask questions about disabilities and hearing status has not been requested since the 1930 Census. Most population estimates of individuals with hearing difficulty have been extrapolated from surveys of small sample sizes (typically a few thousand people), or from published medical research on hearing loss.

Another complication in reporting accurate statistics on deafness and hearing loss is that there is little consistency in defining degrees of hearing loss. Medical researchers test and report findings based on audiometric decibel scales, but the questions on general surveys, like the American Community Survey (2010), only ask if a person has any “trouble” hearing. People’s responses may be misleading, depending on how they interpret the word “trouble.” Social stigma associated with hearing loss may also lead some people to underestimate, or avoid reporting, hearing loss (Burke, 2010). Statistics on deafness can be even less reliable because of the discrepancy between how deafness is medically defined, and how people perceive their hearing loss. Some deaf people may technically be hard of hearing, and some people who may self-report as hard of hearing may actually be functionally deaf.

The Center for Disease Control (CDC) estimated in a May 2010 report that 2.8% of adults 18 years of age had “a lot” of trouble hearing, or were deaf. The Gallaudet Research Institute issued (approximately 8.5 million) a report in 2011 that described the U.S. population as having anywhere from 600,000 to 1.2 million deaf individuals. If “severe hearing impairments” are included, the estimates jump to a range of 2.7 million to 6.7 million individuals. If any kind of “trouble” hearing is included, the estimates make a huge leap to a range of 11 million to 42 million individuals. The National Institute on Deafness and Other Communicative Disorders (NIDCD) state that 36 million people are affected by hearing loss (2010). These figures support the aforementioned difficulties and inconsistencies in data collection and reporting methods, but there are some conclusions that can be made with certainty. Several aspects of hearing loss are reported by Mathers, et al (2000), in a World Health Organization publication. Hearing loss is the most common sensory deficit in human populations, and the most common cause of adult-onset hearing loss is age. Statistics across all major surveys and research studies show that men are more likely to have hearing loss, and the highest proportion of hearing loss occurs in adults over the age of 60 (NIDCD, 2010).

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Cognitive

graphic of brainAccording to the National Institute of Mental Health website, about one in four Americans over the age of 18 or nearly 58 million people experience a diagnosable mental disorder. Despite the breadth of this population – or because of it – it is more difficult to identify the individual in a gallery or a member of a group visit who might be suffering from a mental illness because the illness itself may not be readily apparent to museum staff. While museum education departments are often contacted by individual programs that provide services to an identified population with mental illness, a museum educator may be daily encountering persons suffering from mood disorders such as depression as participants in museum gallery tours who come either on their own or as part of a social or family group. While there are myriad forms of cognitive disabilities, in this curriculum we will focus on two communities–people with autism and dementia.

Autism

Autism is a lifelong, pervasive, developmental disability that is the result of a complex constellation of neurobiological factors not yet fully understood by the medical profession. It is often referred to as a spectrum disorder because the symptoms and characteristics of autism can range from mild to severe and manifest themselves in a wide variety of behaviors.

The spectrum of autism includes those who are non-verbal with very low IQs to those who are extremely verbal with very high IQs, and have advanced musical, mathematical or artistic abilities. In general people with autism have difficulty with communication, social interaction, and sensory processing.

They also often engage in some form of repetitive behaviors or unique fixations. More specifically, they experience the world in a dramatically different and heightened way than neurotypical or so called normal people. Autism is the fastest growing developmental disability. As the number of children born with autism continues to rise, there will be hundreds of thousands of students on the autism spectrum with unique learning styles being mainstreamed into the public educational system and into society at large. According to the Center for Disease Control, 1 in 88 children born in the United States today is being diagnosed on the autism spectrum.

(Material on Autism from Culture of Autism, Neurodiversity, and Art Education by Pamela Rogers, an Art Beyond Sight/Project Access White Paper)

Dementia

Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s is the most common type of dementia.Dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease accounts for 60 to 80 percent of cases. Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies.

Dementia is often incorrectly referred to as “senility” or “senile dementia,” which reflects the formerly widespread but incorrect belief that serious mental decline is a normal part of aging.

In 2014, an estimated 5.2 million Americans had Alzheimer’s disease, including approximately 200,000 individuals younger than age 65 who have younger-onset Alzheimer’s. Almost two-thirds of American seniors living with Alzheimer’s are women. Of the 5 million people age 65 and older with Alzheimer’s in the United States, 3.2 million are women and 1.8 million are men. The number of Americans with Alzheimer’s disease and other dementias will escalate rapidly in coming years as the baby boom generation ages. By 2050, the number of people age 65 and older with Alzheimer’s disease may nearly triple, from 5 million to as many as 16 million, barring the development of medical breakthroughs to prevent, slow or stop the disease.

(Material on Dementia from the Alzheimer Association web site)

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An Overview of Disability History — In One Exhibition

What better way to present an overview of disabilities history for an audience of museum professionals and aspiring museum professionals than an exhibition!

A square of 4 photos from the Everybody site home page

These four images of people and objects illustrate the rich and varied history of disability found in this web exhibition. All images are from the National Museum of American History unless otherwise noted.

The Smithsonian’s National Museum of American History (NMAH) has been documenting the history of disabilities for more than 50 years. EveryBody: An Artifact History of Disability in America is a web exhibition about disability drawn from NMAH’s collections. The online exhibition is at the center of the museum’s work in unraveling the intricate ways in which stigma, rights, and everyday realities intertwine. People with disabilities have been present throughout American history, but rarely appear in textbooks or shared public memories. This exhibition helps us understand the American experience of disability and reveals how complicated that history really is.

Art Beyond Sight chose to present several excerpts from this web exhibition to tell the story of disability history because it does just that so well–it tells a story. The field of disability studies is vast and no museums studies curriculum–let alone a museum exhibition–could attempt to present a comprehensive history of the myriad elements over time. And–that’s not what good museum exhibitions should do. A good exhibition tells an engaging story that makes the visitor really think about a topic, question their own knowledge and beliefs and hopefully want to find out more on their own. This exhibition does just that. While we only present a sampling of the exhibition, you are encouraged to explore the entire site, which is rich with images and personal stories.

We have also selected this web exhibition because it is an exceptional example of accessible web design. Read the site’s Accessibility Statement. 

NOTES:

  • At the end of each section there is a link that will take you to the corresponding page on the EveryBody website. On the site you will find the object images and their accompanying labels. What we have chosen to excerpt here are the equivalents of the introduction and section panels typically found in a gallery exhibition.
  • Art Beyond Sight is excerpting this material from the Smithsonian Institution’s website in accordance with the Smithsonian’s terms of use. The Smithsonian does not endorse anything found on Art Beyond Site’s website.

Cover of Smithsonian bookThis online exhibition was also chosen because the Smithsonian has for many years been at the forefront of accessibility in museums. For example, the EveryBody exhibit is in both English and Spanish. And the Smithsonian’s Guidelines for Accessible Exhibition Design is one of the most well-used documents about museum access. It has been the jumping off point for many cross-departmental conversations in museums across America about how to develop accessible exhibitions.


EveryBody: An Artifact History of Disability in America

Introduction

People with disabilities have been present throughout American history. Many stories and events related to people with disabilities never make it into the history books or shared public memories. Familiar concepts and events such as citizenship, work, and wars become more complicated, challenge our assumptions about what counts as history, and transform our connection with each other when viewed from the historical perspective of people with disabilities, America’s largest minority.

Knowing these histories deepens understanding of the American experience and reveals how complicated history really is. In addition, when history comes through artifacts, distinct themes emerge—for example, the significance of place, relationships, and technology—that are less apparent when only books and words are used.

Disability and History

100 year old photo of immigrant familyPeople with disabilities and ideas related to disability are everywhere in American history. Just as ethnicity and race are not Either/Or rigid classifications, neither is disability. A person is not always disabled or unable to do all things.

The often arbitrary categories that identify people and the words that describe them have shifted across eras and locations. For example, concepts of beauty and comeliness were different when physical injury, smallpox marks, and other scarring were more common.

Nor has how or if a person uses words always been a universal measure of worth. People process information in many different ways. Likewise, a person might have left school to work in a mill before learning to read, might have used a language other than English, or might have had other differences that made their writing and reading atypical.

Who Is Normal?

Bumper sticker Why be normal

“Why Be Normal?” white and blue bumper sticker, 2005

What constitutes a disability has depended on who was judging and who was being judged. A lot depends on things such as where you are, what you are doing, and whether you feel safe or excluded. For example, a beggar, a war veteran, a baby, and a musician may all have shared the experiences of being blind, but stigma, discrimination, and access to resources would be different for each.

 

It’s Complicated

People often use more than one framework at a time when thinking about disability but it’s more complicated than that. There are several familiar, traditional ways of understanding difference. Sometimes difference leads to stigma; other times difference is valued. People may avoid the label of disability at all costs or embrace it. People who are different in similar ways may not equally identify themselves as having a disability. The same person who typically functions well in one situation may not in another. The lines drawn around disability through words, laws, and customs are largely arbitrary and situational.

People have heated opinions about whether such things as addiction, epilepsy, obesity, hemophilia, attention deficit disorder, dyslexia, intersex, and cancer constitute disabilities. Singling out people who are different often depends on their wealth, race, power, talent, and even location. Baseball great Mickey Mantle broke a bone and used a wheelchair. First lady Betty Ford was addicted to painkillers. Boxing legend Muhammad Ali has Parkinson’s disease. Actor James Earl Jones stuttered. President Franklin D. Roosevelt had polio (learn more about polio). Scientific genius Albert Einstein had dyslexia. Tennis champion Arthur Ashe had AIDS. It’s complicated.

God Is Testing You

tin eye votiveReligious beliefs about disability have varied among the world’s traditions. In colonial America, many Christian people believed that impairment was a punishment from God. Others thought certain disabilities indicated possession by an evil spirit. In contrast, some American Indian groups did not have words for disability and instead focused on how a person fulfilled obligations to the community. Religious belief has also led people to prayer and asking for divine intervention to produce cure and healing.

 Help the Handicapped

photo poster child from 1950sIn the charity tradition, people with disabilities were seen as dependent and in need of help or saving.  The proliferation of American charitable efforts directed at people with disabilities began in the early 1800s. Philanthropy has had to contend with the fine line between paternalism and empowerment.

 

 

 

 

What Is Wrong With You?

What_is_Wrong_header_0With the incorporation of medicine into more aspects of daily life in the 20th century, health practitioners and scientists closely studied human variations. With the incorporation of medicine into more aspects of daily life in the 20th century, health practitioners and scientists closely studied human variations. http://everybody.si.edu/words/what-wrong-you

 

Crip Is Hip

round button with words crips are beautifulValuing disability as a part of one’s core identity is a principle of social empowerment. Yet, to be sure, understanding the roles of environment and public attitude in the creation of disability does not necessarily preclude a wish for medical treatment or for being less different.

The social model assumes that disability is malleable and a product of culture. Understanding disability as fundamental to human existence and shaped by society has become more widespread since the 1960s. Some people place disability in a category similar to ethnicity, skin color, and gender.

 Place

Space is a key factor in the history of disability. Artifacts capture both the dramatic and less obvious stories. Institutions, group homes, schools, nursing homes, camps, and independent living centers generated camaraderie and new ideas as well as rebellion and change. People have been legally forced into and out of homes, hospitals and institutions. Public health measures included quarantine for contagion. The architecture and design of space shapes social interactions and sends messages about who is welcome. People who use a mobility device, such as a wheelchair, white cane, or crutch, have an intimacy with the textures of the road surface, the behaviors of other travelers, the location of light and signage, and similar landscape features. This awareness helps in navigation and safety. In the mid-20th century, institutions and local governments began adapting public spaces for accessibility. Activists lobbied for legislation and demanded alteration of urban landscapes and buildings, often using concepts of Universal Design.

Outside

photo deaf and dumb asylum columbus ohioEveryone is somewhere. Social expectations about citizenship, health, and disability motivated 19th-century reformers and politicians to create asylums, hospitals, and residential schools. The buildings were often a point of pride for local communities and a tourist site, worthy of postcard recognition. The postcards also served as positive public relations, such as this one from the Western Pennsylvania School for the Blind in which sweet children and attentive teachers play games. The existence of so many postcards from so many places indicates the extent to which people accepted institutions as mundane and uncontroversial.

Removal

polio quarantine signQuestions about where people belong and who decides have created tension throughout American history. In the Early Republic, the new American government organized ways to address differences among the population. Regulations on commerce, property, and other affairs were revised to support a rapidly expanding economy. Some Americans also concluded that those who were different, vulnerable, or less powerful should not have certain legal protections. Hospitals had set aside wards for people with mental illness since the mid-18th century. The infamous removal of Cherokee, Seminole, and other Indians in the Southeast in the early 1800s further demonstrated cultural agreement on how to deal with differences. Removal of people with disabilities from their original communities started then as well. One of the first institutions was the Connecticut Asylum for the Instruction of Deaf and Dumb Persons in 1817. Ambitious construction of asylums, hospitals, and specialized schools continued throughout the century.

Inside

girls in convalescent homeInstitutions were formed for different kinds of disabilities and for different purposes.  Once arrived, a person might find himself or herself to be a student, worker, inmate, patient, or “consumer.” No matter where people ended up, they grappled with issues of identity, community, and autonomy.

 

 

Identity

For many persons with a disability, the greatest struggle is to have others accept them as human. Being one among many could be difficult for people living far from home, without either the capacity for independent action or a means for personal development. The common institutional practice at state hospitals of burying the dead without name or date indicated the extreme of this loss of individuality.

This stake is from the racially segregated cemetery at the state asylum in Milledgeville, Georgia. All of the markers were removed in the 1960s to facilitate groundskeeping. For minimal record keeping, numbers were used twice. Stake 72 marked the grave of either Nathaniel Cowart (white) or Sarah Savage (African American), both of whom died in 1882.

Bertha Flaten (1875-1905) was institutionalized because she had seizures. When she died, a cast-concrete marker with the number 7 was placed on her grave. There are many thousands of such graves around the United States. Through the efforts of former hospital inmates and family members, anonymous markers at the Faribault State School and Hospital (where Flaten was) and at other sites are being replaced with markers that properly honor the deceased.

Community

class photo 1949Experiences inside institutions varied widely. Bonds formed around shared routines. People might learn a trade or a language, receive an education, and make lifelong friendships. At other times, there might be forced treatment, punishment, substandard care, and abuse.

 

 

Autonomy

photo straigh jacketLoss of autonomy and self-determination could be extreme in institutions. In the 1950s, over half a million people with disabilities lived in institutions. The movement to release people into group homes or their own homes, begun in the 1970s, continues and is still controversial.

Physical restraint of disruptive and rebellious people and as punishment included straight jackets, shackles, and confinement in cells. Physicians used surgical interventions as well. Destruction of the prefrontal lobe, using a lobotomy knife, was a common procedure in the mid-20th century. Doctors also tried mechanical and chemical ways to “quiet” or re-direct brain activity, such as electroconvulsive shock and the repeated induction of insulin comas. Antipsychotic drugs, such as thorazine, developed in the 1950s radically changed treatment of people with mental illnesses. Thorazine and dozens of other pharmaceuticals slowly replaced older therapies and led to the closing of asylums in the 1970s.

Work

Employ the Handicapped 1951Work is an important part of social citizenship and responsibility in the United States. A person’s work confers status and power and contributes to the commonweal. People with disabilities throughout American history have faced difficulties in getting work skills and finding jobs. Sometimes, people could only find work that exploited their physical differences. Such “freak shows” and circuses were popular from the 1840s to the 1960s. Despite discrimination, people with disabilities have worked in every field.

Current statistics from the U.S. Census Bureau and the National Association on Disability illustrate the continuing problem.

$1,961     Average monthly earnings of people with any kind of disability.

$2,724     Average monthly earnings of people with no disability.

28.6%      Of people 25 to 64 years old with a severe disability live in poverty.

17.9%      Poverty rate for people with a non-severe disability.

14.3%      Poverty rate for people with no disability

Eugenics

sterilization law flyer 1981Although citizenship guarantees certain rights, access to them has been unequal. For example, some citizens have been sterilized, warehoused, euthanized, and imprisoned because their voices, brains, and bodies were not acceptable to their communities.

With the popularity of social Darwinism and the ideas of Herbert Spencer—the doctrine of “survival of the fittest”—in the late 19th century, acceptance of people with disabilities diminished. Respect for and aid to people with disabilities and the poor eroded. At the same time, many people believed that criminal and other behaviors or traits, such as addiction and homosexuality, were inherited. Eugenicists justified eliminating the “unfit” by citing the betterment of society.

The idea of creating “better citizens” is called eugenics and became popular in the 1880s. Eugenic ideas were embraced by scientists, politicians, feminists, and many others, including Alexander Graham Bell, Woodrow Wilson, Victoria Woodhull, and Thomas Edison. In 1907, Indiana became the first state with a forced sterilization law, allowing doctors to castrate or sterilize people in institutions against their will. The Supreme Court’s 1927 Buck v. Bell decision upheld such laws. By the 1970s more than 60,000 individuals had been forcibly sterilized under thirty-three state laws.

Activism

Activism takes many forms. It can be as complicated as a class-action lawsuit or as simple as wearing a T-shirt. Certain kinds of activism are unquestioned as part of social citizenship, such as voting, being informed, and going to school. People engage in other forms of activism, such as petitioning and protest, when rights are denied.

“The notion that any one person is the single cause of any significant social change—that Abraham Lincoln alone freed the slaves—is a devastating stereotype which robs individuals of responsibility and credit, and actually inhibits social change…. You can be a revolution of one. In your living room, in your family, in your community.” —Justin Dart, 1998

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Models of Disability

Models of Disability are tools for defining impairment and, ultimately, for providing a basis upon which government and society can devise strategies for meeting the needs of disabled people. They are often treated with skepticism as it is thought they do not reflect a real world, are often incomplete and encourage narrow thinking, and seldom offer detailed guidance for action. However, they can be a useful framework with which to gain an understanding of disability issues and the perspective held by those creating and applying the models.

Models are influenced by two fundamental philosophies. The first sees people with disabilities as dependent upon society. This can result in paternalism, segregation and discrimination. The second perceives people with disabilities as customers of what society has to offer. This leads to choice, empowerment, equality of human rights, and integration. As we examine the different Models we will see the degree to which each philosophy has been applied.

We should not see the Models as a series of exclusive options with one superior to or replacing previous sets. Their development and popularity provides us with a continuum on changing social attitudes to disability and where they are at a given time. Models change as society changes. Given this degree of understanding, our future objective should be to develop and operate a cluster of models, which will empower people with disabilities, giving them full and equal rights alongside their fellow citizens.

The Changing Notions of Disability

Ideas about disability have changed over time as our attitudes toward and understandings of the individual, agency, and responsibility have shifted.  The following are some of the models of understanding disability that have been utilized throughout history.

logo world health organizationFor most of the 20th century, disability was defined according to a medical model that defines a disability as the result of a physical condition within an individual.  In 2001 the World Health Organization (WHO) established a new definition of disability based on human rights or social models.  However, there are many models that have been presented over the years.

The Medical Model

The medical model of disability came about as “modern” medicine began to develop in the 19th Century. Since many disabilities have medical origins, people with disabilities were expected to benefit from coming under the direction of the medical profession. Under this model, the problems that are associated with disability are deemed to reside within the individual, and solutions are found by focusing upon the individual. In other words, the solution to a disability is to find a cure for the individual, a way to make him or her ‘normal.’ The model imposes a paternalistic approach to problem solving, which, although well intentioned, concentrates on “care” and ultimately provides justification for institutionalization and segregation. This model can restrict people with disabilities’ opportunities to make choices, control their lives and develop their potential.

An offshoot of the medical model, the rehabilitative model of disability sees the person with a disability as in need of services from a rehabilitation professional who can provide training, therapy, counseling or other services to make up for the deficiency caused by the disability. Historically, this model gained acceptance after World War II when many disabled veterans needed to be re-introduced into society. The current Vocational Rehabilitation system is designed according to this model.

The Social Model

The social model is the way we presently define disabilities. This model views disability as a consequence of environmental, social and attitudinal barriers that prevent people with impairments from maximum participation in society. Under the social model, disability is caused by the society in which we live and is not the ‘fault’ of an individual disabled person, or an inevitable consequence of their limitations. Disability is the product of the physical, organizational and attitudinal barriers present within society, which lead to discrimination. The removal of discrimination requires a change of approach and thinking in the way in which society is organized.

The social model can also be referred to as the minority-group model of disability. This argues from a socio-political viewpoint that disability stems from the failure of society to adjust to meet the needs and aspirations of a disabled minority. It presents a radically different perspective on disability issues and parallels the doctrine of those concerned with racial equality that “racism is a problem of whites from which blacks suffer.” If the problem lies with society and the environment, then society and environment must change. If a wheelchair user cannot use a bus, the bus must be redesigned.

The social model of disability emerged from the work of the World Health Organization (WHO) that redefined disability in 2001.  WHO declared disability an umbrella term with several components:

  • Impairments: a problem in body function or structure
  • Activity limitations: a difficulty encountered by a person in executing a task or action
  • Participation restrictions:  a problem experienced by a person in involvement in life situations.

Thus, WHO separates the idea of disability from the idea of impairment.  It identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) as contributory factors in disabling people.  This model promotes the notion that while physical, sensory, intellectual, or psychological variations may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences.

This perspective has had a profound effect upon the museum community for people with disabilities strive for equality in all areas of life including museum visitorship and participation.  It thus becomes incumbent upon museums to ensure that their facility, exhibitions and programs are inclusive.

The Moral/Religious Model

The moral model of disability is historically the oldest and is less prevalent today. It sees the presence of a disability as a punishment for wrongdoing and is often associated with religious belief.  Some cultures associate disability with sin and shame, and, in these cases, disability is often associated with feelings of guilt, even if such feelings are not overtly based in religious doctrine. For the individual with a disability, this model is particularly burdensome. In some cases, the entire family of someone with a disability is stigmatized. In response, families have hidden their relative with a disability, keeping them out of school and excluding them from having a chance to take a meaningful role in society. Even in less extreme circumstances, this model has resulted in general social ostracism and self-hatred.

Rights-Based Model of Disability

In more recent times, however, the notion of ‘disability’ has come to be conceptualized as a socio-political construct within a rights-based discourse. The emphasis has shifted from dependence to independence, as people with disability have sought a political voice, and become politically active against social forces of ableism Disability activists, in engaging in identity politics, have adopted the strategies used by other social movements commanding human and civil rights, against such phenomena as sexism and racism.

Tragedy/Charity Model of Disability

The Tragedy/Charity Model depicts disabled people as victims of circumstance, deserving of pity. This and Medical Model are probably the ones most used by non-disabled people to define and explain disability.

Traditionally used by charities in the competitive business of fundraising, the application of the Tragedy/Charity Model is graphically illustrated in the televised Children in Need appeals in which disabled children are depicted alongside young “victims” of famine, poverty, child abuse and other circumstances. Although such appeals raise considerable funds for services and equipment which are not provided by the state, many people with disabilities find the negative victim-image thoroughly offensive. In fact Children in Need has been described as “televisual garbage … oppressive to disabled people” M. Oliver quoted in C. Donnellan “Disabilities and Discrimination Issues for the Nineties” 1982. Some go as far as interpreting the tragic portrayal as a means of maintaining a flow of donations and keeping able-bodied people in work.

The idea of if being recipients of charity lowers the self-esteem of people with disabilities. In the eyes of “pitying” donors, charitable giving carries with it an expectation of gratitude and a set of terms imposed upon the beneficiary. The first is patronizing; the second limiting upon the choices open to disabled people. Also, employers will view people with disabilities as charitable cases. Rather than address the real issues of creating a workplace conducive to the employment of people with disabilities, employers may conclude that making charitable donations meets their social and economic obligations.

This is not to advocate dismantling charities and outlaw caring, charitable acts, which enrich our society and bring badly needed funds. But we do need to educate charity managers and professionals to review the way they operate and ensure that funds are channeled to promote the empowerment of people with disabilities and their full integration into our society as equal citizens – requiring our respect and not our pity.

Banner of Michigan Disability Rights CoalitionMuch of the above material on Models of Disability was sourced  from the Michigan Disability Rights Coalition website.

Here we have highlighted the most pertinent Models, but visit their site to find information about other dated Models, and other material about disability rights in general.


The following chart details the key differences between archaic and modern Models of Disability:

disability chart
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