Disability History Exhibit

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Panel 1

DISABILITY HAS ALWAYS BEEN, AND WILL LIKELY ALWAYS BE, A PART OF THE HUMAN CONDITION.

SOCIETAL VALUES: Physical perfection, beauty, intelligence.

Living conditions for persons with disabilities were brutal during this period. Some people were able to survive through acts of charity or as objects of curiosity, but most were not as fortunate. Intolerance, sickness, and disregard for persons with disabilities often meant death or a very low quality of life.

Moral Viewpoint: Early Greeks and Romans valued physical perfection. Appearances mattered. Racial and physical differences were seen as marks of inferiority.

INVOLVEMENT BY PERSONS WITH DISABILITIES: Objects of scorn or charity, survival as beggars.

RESPONSES TO DISABILITY: Abandonment, exposure, mutilation.

Medical Viewpoint: Exposure: To expose meant to leave one out in the weather to die. Exposing young children with severe disabilities was a common practice in ancient Greece.

Moral Viewpoint: The Ancient Era idealized physical and mental perfection. Disability, although common at this time, was viewed as a mark of inferiority.

Medical Viewpoint: Hippocrates (460-377 B.C.) believed that health involved a balance of the four "humors," or basic body substances: "blood, phlegm, yellow bile, and black bile." This belief led later physicians to relate mental illness and mental retardation to an imbalance of "black bile."

"There is only one good, knowledge, and one evil, ignorance." – Socrates

Moral Viewpoint: The philosopher Aristotle (384-322 B.C.) believed, as did most others in Ancient Greece, that man was the most highly evolved being, and that woman was one giant evolutionary step below, representing "the first step along the road to deformity." Aristotle also recommended that there should be a law "to prevent the rearing of deformed children." In his Politics, Aristotle wrote "As to the exposure and rearing of children, let there be a law that no deformed child shall live."

Social Viewpoint: Principle of the Least: "For he who is least among you all — he is the greatest." (Luke 9:46) Jesus Christ (6 B.C. - 30 A.D.) showed compassion for persons with disabilities. In the New Testament Jesus is frequently credited with showing kindness and effecting miraculous cures of those who were lame, blind, and otherwise disabled. St. Paul directed Christians to "comfort the feeble-minded." Jesus also welcomed those who were poor and disenfranchised and treated them as equals.

Connection to Different Time in History connected to Social Viewpoint: "disenfranchised" could include people with mental retardation, epilepsy, mental illness, leprosy, physical disability, or deformity.

Moral Viewpoint: With the rise of Christianity, there was a gradual influence on how persons with disabilities were treated. By the fourth century A.D., the rise of Christianity led to more humane practices toward persons with disabilities. Infanticide (the practice of killing children) was discontinued, and helping "the afflicted" became a sign of strength.

STEREOTYPE: Holy Innocents: belief that individuals are special children of God, with a special purpose; seen as incapable of committing evil, and sometimes viewed as living saints.

Panel 2

RELIGION HAS PLAYED AN IMPORTANT ROLE IN PROVIDING BASIC SERVICES AND SHAPING ATTITUDES TOWARD PEOPLE WITH DISABILITIES.

SOCIETAL VALUES: Fear and obsession with God; belief that people with disabilities get what they deserve.

RESPONSES TO DISABILITY: Exile; refuge in leper colonies or church shelters.

STEREOTYPE: Persons with disabilities as subhuman organisms: as "animal-like" or "vegetative," not deserving of all human rights; often referred to as "so-called human beings.

Medical Viewpoint: Having leprosy meant living a life outside of society. When traveling through a town, people with leprosy were required to ring a bell, alerting others to their presence.

Connection to Different Time in History: When leprosy disappeared after the Crusades (1100-1300), the remaining colonies — the leprosaria— were converted to other uses, resembling our present-day institutions. These establishments were soon filled with all types of persons considered deviant: orphans, vagabonds, madmen, incurables, prostitutes, widows, and criminals. These "cities of the damned" numbered in the thousands, and had the power of "authority, direction, administration, commerce, police, jurisdiction, correction and punishments," and had at their disposal "stakes, irons, prisons and dungeons." By 1657, France had one such facility, the Bicetre, that housed 1,615; it’s sister institution, the Salpetriere, housed 1,416 women and children. The United States has operated only slightly less gruesome institutions as recently as the 1970s.

Connection to Different Time in History to Moral Viewpoint: In the United States, large, dehumanizing institutions for people with developmental disabilities reached their peak in the 1970s. This picture would not be an uncommon sight on the back wards of any large institution at this time in recent history, and this treatment would not have been acceptable without viewing those with severe disabilities as subhuman.

Medical Viewpoint: Living conditions for persons with disabilities were brutal during this period. Intolerance, sickness, and disregard for persons with disabilities meant death or at most a very low quality of life. Diseases such as cholera, typhus, and the plague bacillus, along with malnutrition, accounted for a large percentage of postnatal disabilities.

Connection to Different Time in History: Malnutrition, a principal cause of disabilities, is still responsible for one in five disabilities worldwide.

Moral Viewpoint: John Calvin (1509-1564) preached the notion of predestination, stating that God has already chosen who will and who will not be saved. Calvin's doctrine implied that people with disabilities were not among the chosen.

Moral Viewpoint THE MORAL MODEL: Disability is either a sin on the part of persons with disabilities or their families, or an act of God for some divine purpose. In the first case, people are often punished and excluded from society. In the second case, they are viewed as divine and considered holy. Perceived as sinners or saints, persons with disabilities were usually kept separate from mainstream society; their disability was thought to serve some divine purpose, and was believed to be permanent and unchanging.

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The Roman Catholic Church provided refuge to those in need, establishing orphanages, hospitals, and homes for the blind and the aged. Conditions at such institutions were custodial at best, and most children did not survive. Persons with developmental disabilities (together with those with mental illness) who could not stay with their families were often placed in monasteries, charitable facilities, hospitals, prisons, almshouses, pest houses, workhouses, or leper colonies. While there are a few good examples of residential care in the middle ages, most persons with developmental disabilities received basic care and shelter or no services at all.

Moral Viewpoint: Mendicants – people who survived by begging – were common during this time, as pictured below in the painting The Beggars, by Pieter Bruegel (1568).

Moral Viewpoint: One event that had a profound effect on how people perceived disability was the Protestant Reformation, which began in 1517 as an attempt to reform the Roman Catholic Church and ended with the establishment of independent Protestant churches. During this period, we see persons with developmental disabilities treated as subhuman organisms. Martin Luther (1483-1546) denounced children and adults with mental retardation as "filled with Satan." Luther advised that children with severe mental retardation should be drowned because they are ". . . a mass of flesh with no soul. For it is the Devil’s power that he corrupts people who have reason and souls when he possesses them. The Devil sits in such changelings where their souls should have been."

Moral Viewpoint: As the authority of the Roman Catholic Church diminished, many of the charitable services it provided ceased to exist. The "poor and misfortunate," without the refuge of the church, became increasingly homeless in the growing cities. In the city of Paris during the early 1500s, approximately 1/3 of the population resorted to begging as a means of survival.

Panel 3

PERSONS WITH DISABILITIES ARE TREATED AS SOCIAL PROBLEMS AND PUBLIC BURDENS.

INVOLVEMENT BY PEOPLE WITH DISABILITIES: Survival as outcasts and beggars.

Moral Viewpoint - Between 1563 and 1601, Queen Elizabeth of England passed a series of laws requiring the state to take care of the "poor and disadvantaged." Basic care was provided for the unemployable poor, almshouses were established for the aged poor, and workhouses were built for vagrants who refused to work. Many with disabilities were placed in almshouses or workhouses, where the conditions were grim.

Connection to Different Time in History - A modern parallel can be drawn to our institutions of the 1950s and 1960s, where a larger number of persons were admitted to meet a growing demand for services, resulting in dehumanizing conditions and a poor quality of life.

Moral Viewpoint: At times, persons with disabilities were "shipped off" to other lands, so they would no longer pose a burden on their communities. These boats would sail from port to port, charging admission to view their strange human cargo. Eventually, the ships would abandon their "passengers" at another port, forcing them to fend for themselves. Some argued that the fresh sea air had a curative affect.

Connection to Different Time in History: Similar arguments have been used for locating institutions away from the community, where the air was apparently fresher and had a soothing effect upon the inmates.

Moral Viewpoint - During this time, small steel imprisonments called "idiot cages" also became common in town centers to "keep people with disabilities out of trouble." Mostly, they served as entertainment for townspeople.

Moral Viewpoint - FOOL (fool): a) A person with little or no judgment; b) A man formerly kept in the household of a nobleman or king to entertain by joking and clowning; a victim of a joke or trick.

Connection to Different Time in History: St. Mary of Bethlehem, a large asylum in London better known as "Bedlam," had windows opening onto the sidewalk, allowing passersby to witness the people living within.

Connection to Different Time in History: From a social viewpoint, disability was closely linked to poverty — a condition that existed in ancient times and continues today, where the rate of unemployment for persons with disabilities is now over 65%.

They that go down to the sea in ships, That do business in great waters; These see the works of the Lord, And wonders in the deep. For he commandeth, and raiseth the stormy wind, Which lifteth up the waves thereof. They mount up to the heaven, they go down again to The depths: Their soul is melted because of trouble. They reel to and fro, and stagger like a drunken man, And are at their wit’s end. Psalm 107

Panel 4

Renaissance

" Know then thyself, presume not God to scan; The proper study of mankind is man." – Alexander Pope

DISABILITY BECOMES A MEDICAL ISSUE REQUIRING THE SERVICES OF TRAINED PROFESSIONALS.

Medical Viewpoint - The Renaissance was an intellectual and cultural movement that began in Italy in the 1300s and spread throughout Northern Europe. It signified a revival of classical learning, art, and architecture — and the concept of the dignity of man. While religion remained a powerful influence, people became less consumed with spiritual matters and more interested in the arts and sciences, leading to advancements in health care and to a better understanding of disability.

In 1402, St. Mary of Bethlehem, an asylum popularly known as "Bedlam," opened to receive mental patients in England. The institution itself was founded in 1247 as a priory. The famous painting of Bedlam is by William Hogarth, 1735.

THE MEDICAL MODEL: The medical model emerged around the 18th century, defining disability as any one of a series of biological deficiencies located in the body. No longer seen as the result of divine intervention, disability became a medical issue, requiring the services of trained professionals. Persons with disabilities assumed the on-going role of patients, needing to be cured.

Connection to Different Time in History - This model of disability is not limited to one era of history. Many services and facilities for persons with disabilities are still based on this model, which views the person as broken and needing to be fixed. Only recently has a newer, cultural model of disability effectively challenged the power of the medical model.

Medical Viewpoint - "Removing the fool’s stone."

Connection to Different Time in History - Frontal lobotomies became more common in the 20th century as a means of permanently modifying behaviors.

Medical Viewpoint - By defining people by their disabilities rather than as full human beings, the medical model fosters dependence on professional care. Because of this forced dependence, and societal attitudes that view persons with disabilities as "pitiful," "child-like," or worse, over 65 percent of individuals with disabilities are unemployed. For many persons with disabilities — especially before the Independent Living Movement — the message was clear: overcome, rather than accept, your disability.

STEREOTYPE: Persons with disabilities as sick: viewed as those who need to be cured of a dread disease; referred to as patients; in need of professional care in a hospital setting.

Panel 5

TREATMENT

A GRADUAL UNDERSTANDING OF SCIENCE LEADS TO NEW AND OFTEN PAINFUL TREATMENTS FOR PERSONS WITH DISABILITIES.

SOCIETAL VALUES: Education, belief in science, and a romantic view of humanity.

RESPONSES TO DISABILITY: Study and attempt to cure the "patients," lock away those found incurable, and build large facilities to house them.

INVOLVEMENT BY PEOPLE WITH DISABILITIES: People become objects of study, are used in experiments, and assume the role of "patients."

Medical Viewpoint - Early treatments to "cure" disability were often brutal. Versions of the tranquilizer chair can still be found in some institutions.

Medical Viewpoint - Moral Management: Philip Pinel (1745-1826), the leading French psychiatrist of his day, was the first to say that the "mentally deranged" were diseased rather than sinful or immoral. He practiced gentle treatment and patience rather than using physical abuse and chains on hospital patients. In 1793, Pinel famously removed the chains and restraints from the inmates at the Bicetre asylum, and later from those at Salpetriere.

In 1798, Thomas Malthus published "Essay on the Principle of Population," arguing that population multiplies geometrically, food arithmetically, and therefore that population will outstrip food supply. In addition to cutting the birth rate by sexual restraint and birth control, Malthus advocated identifying all people "defective" in any way, who looked or behaved or functioned differently than the rest of us, and eliminating them.

With the industrial revolution of the 18th century, more and more people flooded into cities, working for extremely low wages and living in squalid conditions. Children represented a large portion of the work force, performing grueling work for twelve to sixteen hours per day. Pauper children were often contracted to factory owners for cheap labor. To get rid of "imbecile" children, parish authorities often bargained with factory owners to take one "imbecile" with every twenty children. In most cases, these children disappeared mysteriously.

Medical Viewpoint - In 1799, Jean-Marc Gaspard Itard (1774-1838), a student of Pinel and an advocate of Rousseau's "noble savage" beliefs, heard reports of a boy abandoned in the woods of Aveyron, France, who had apparently been raised by wolves. "Victor, the Wild Boy of Aveyron," as he was called, was chosen by Itard as an experimental subject to prove the validity of John Locke’s "blank slate" concept: that a person could become, or be made into, whatever one wants. Victor was probably in his early teens, a child with severe mental retardation who likely had been abandoned by his parents. Victor made some progress in adapting to his new environment, but Itard grew discouraged, not seeing the dramatic changes he hoped for. Still, with his limited success, Itard did prove that children with mental retardation could improve to some extent.

Panel 6

SOCIAL REFORM AND NEW IDEAS IN EDUCATION OFFER OPPORTUNITIES FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES.

"There are two ways of spreading light – to be the candle or the mirror that reflects it." – Edith Wharton

STEREOTYPE: Persons with disabilities as objects of pity: seen as suffering from some condition beyond their control, and therefore not considered accountable for their behavior; viewed with a "there but for the grace of God go I" attitude; paternalism and low growth expectations are typical consequences of this viewpoint.

Moral Viewpoint - Persons who lived in extreme poverty, including many with physical or mental disabilities, were often put into poorhouses or almshouses. Such establishments, supported by public funds, began in the Middle Ages as a means of removing economic outcasts from society.

Some poorhouses were still in use until World War II.

Connection to Different Time in History - Wealthier parents tended to keep their children with developmental disabilities at home. In the more rural areas, persons with developmental disabilities were often a normal part of the community.

Social Viewpoint - Edward Seguin (1812-1880), a young and influential doctor, was considered the first great teacher in the field of developmental disabilities. He believed that mental deficiency was caused by a weakness of the nervous system, and could be cured through a process of motor and sensory training. By developing the muscles and senses, Seguin believed his pupils – regardless of their level of mental retardation – would obtain more control over their central nervous systems, thus allowing them to have more control over their wills. Many of Seguin's concepts are still used today, including positive reinforcement and modeling.

Moral Viewpoint - Social Reformer Dorothea Dix advocated for better services for persons with mental illness and other disabilities. As she traveled across the country visiting jails, almshouses, poorhouses, and asylums, Dix spoke to many state legislatures, pleading with them to improve the conditions for "the wards of the nation." Through her passionate appeals, and with only the best intentions for persons with disabilities, Dix helped prepare the way for public institutions.

Social Viewpoint - In 1842, Johann Jakob Guggenbuhl, a young doctor, was "stirred by the sight of a dwarfed, crippled cretin of stupid appearance mumbling the Lord's Prayer at a wayside cross." Guggenbuhl believed that his students could be cured through proper health programming and training, and opened a training school in Switzerland, called the Abdenberg, 4,000 feet above sea level on a mountain summit. (It was believed lower altitudes somehow contributed to cretinism.) For a while, the school was a tremendous success. But as Guggenbuhl traveled frequently abroad for long periods, and as the school became increasingly crowded, visitors discovered neglect and abuse, and the school was closed. While Guggenbuhl’s school proved a failure, his early success with education influenced and inspired educators and reformers in the United States.

Connection to Different Time in History - The term cretin applied to people with intellectual disabilities and stunted growth. It is based on the word Christian, with the purpose of emphasizing that despite physical or mental disabilities, they were nevertheless human beings. The word was adopted as a clinical term for someone suffering from dwarfism and mental retardation as a result of a congenital thyroid deficiency. It has since become synonymous with "fool."

Medical Viewpoint - Many believed phrenology – the practice of studying the shape of the skull to determine human characteristics and functions – offered the only hope of understanding developmental disabilities. Phrenologists went on to say that moral, personality, and intellectual characteristics are also determined by the shape of the skull, which determines the shape of the brain. Once a highly respected "science," phrenology was discredited as scientists found no relationship between the size and shape of the cranium and the degree of intelligence.

Social Viewpoint - In the United States, Dr. Samuel Gridley Howe (1801-1876), then the director of the Perkins School for the Blind, established the Massachusetts School for Idiotic and Feeble-Minded Youth in 1848, an experimental boarding school in South Boston for youth with mental retardation. Howe's wife, Julia Ward Howe, was also a reformer, and is famous for writing The Battle Hymn of the Republic.

"Nowhere is wisdom more necessary than in the guidance of charitable impulses. Meaning well is only half our duty; Thinking right is the other, and equally important, half." –Samuel Gridley Howe, 1868, at the dedication in Batavia, New York of an institution to serve people with disabilities.

Moral Viewpoint - Training schools were considered an educational success, offering hope to many families of children with developmental disabilities. Across the country, parents wrote to state officials and school superintendents, seeking admission for their sons and daughters. Some parents sought an education for their child; others simply needed relief.

Social Viewpoint - At the age of 19 months, Helen Keller lost her sight and hearing through an illness. With the help of teacher Anne Sullivan, she learned to speak, read, and write and graduated from Radcliffe College in 1904. She lectured across the globe and raised money for education of many people with disabilities. Helen was also a member of the Socialist Party who tried to discuss disability in the broader terms of poverty and social inequity.

Panel 7

THE COMMITMENT TO EDUCATION AND THE QUALITY OF SERVICES DECLINE WITH THE INCREASING DEMAND FOR INSTITUTIONAL PLACEMENT.

SOCIETAL VALUES: Belief in training and education; state responsibility for persons with disabilities.

RESPONSES TO DISABILITY: Establish training schools; build larger institutions; shift from education to custodial care.

INVOLVEMENT BY PEOPLE WITH DISABILITIES: Students; objects of charity; inmates of institutions.

"Am I my brother’s keeper?" – Genesis IV, 9

During the economic troubles of 1857 and as a result of the Civil War, there were few jobs for students from the training schools. Competition for jobs was already high, with immigrants willing to work for low wages. Pupils who returned to their communities looking for work usually ended up in poorhouses or jails. At this time, there was a growing demand for services and less money available for training schools. Rapidly, training schools became institutions.

Moral Viewpoint - Superintendents believed that persons with different disabilities should be placed in different quarters. Therefore, an institution might have a separate building for persons with epilepsy called an "epileptic colony," another such building for "low-grades," and perhaps a "girls cottage" for women with various disabilities. The colony plan allowed institutions to admit a larger number of inmates, and relieve society of having to care for such persons in poor houses. Productive workers at the farm colony were often "paroled" to work as cheap labor on private farms. As enrollment of persons with more severe disabilities increased, the farm colonies grew to resemble the larger institutions.

Moral Viewpoint - Training schools quickly became asylums, providing little more than custodial care for an increasing number of individuals with developmental disabilities. As enrollment increased, the commitment to education was largely abandoned. Pupils became "inmates." The goal of educating pupils for life in the community was changed to training inmates to work inside the institution. Higher-functioning inmates were taught functional skills and used as laborers to reduce costs.

Moral Viewpoint - The superintendents of these institutions worked toward self-sufficiency, with institutions producing their own food and supplies when they could, thereby lessening their dependence on the state for support. Many institutions had their own power plants, laundries, and farms.

Connection to Different Time in History - As institutions grew in size, superintendents competed with one another to maintain the largest, most self-sufficient facilities. This led to institutions with over 6,000 people by the 1960s, at places like Willowbrook State School in New York.

Census results of persons with mental retardation: 1850-1890

Panel 8

FROM CARE TO CONTROL

THE QUALITY OF SERVICES FOR PERSONS WITH DISABILITIES FURTHER DECLINES WITH A GROWING SUSPICION OF ALL PEOPLE WHO ARE DIFFERENT.

SOCIETAL VALUES: Protect "normal" Americans; fear of people who look and act differently.

Moral Viewpoint - A popular textbook for educators by Stanley P. Davies advocates strict control and confinement of persons with disabilities to protect society.

Connection to Different Time in History - In 1959, Stanley P. Davies published The Mentally Retarded in Society, a radical and far more positive revision of his earlier work.

Social Viewpoint - Rehabilitation services on a broad scale were introduced as a federal program following World War I. The need for re-training men disabled in the war led to the beginning of the vocational rehabilitation system. Services were also established for the many soldiers who lost hearing, eyesight, and mobility.

Connection to Different Time in History - 2,000 paraplegic soldiers survived the Second World War, compared with only 400 from World War I.

"Give me your tired, your poor, your sick, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore . . ." - Emma Lazarus

Moral Viewpoint - "Moral imbecility," also referred to as juvenile insanity, moral insanity, physical epilepsy, and moral paranoia, was a vague concept used to define a wide range of characteristics, from minor behavior problems to serious aggressiveness. Persons who fit this category were also called "defective delinquents" and "morons." Instead of focusing on the individual's level of ability, these labels shifted the focus to the potential social evils they could cause.

Medical Viewpoint - Social Darwinism, promoted by Herbert Spencer, held that the theories governing the evolution of biological species by natural selection also govern the affairs of society and social evolution. Just as Charles Darwin had said those who survive are those best fitted to their environment ("survival of the fittest"), social Darwinism held that only the "fittest" social systems should survive. This belief helped to justify forced sterilizations, marriage restrictions, and the warehousing of individuals with developmental disabilities in institutions.

Social Viewpoint - One positive event of this era was the beginning of special education. As teachers in public schools became aware of the increasing numbers of students with learning disabilities, they called for special classes and teachers to educate them. Rhode Island opened the first public special education class in the U.S. in 1896. By 1923, almost 34,000 students were in special education classes.

Social Viewpoint - Dr. Alfred Binet and Dr. Theodore Simon developed "a measuring scale of intelligence" for determining the degree of intelligence of persons with developmental disabilities. Initially used to identify students who required special help, this test was adopted by American superintendents to easily label people with developmental disabilities.

Connection to Different Time in History - In 1913 the United States Public Health Service administered a version of the newly invented Binet IQ test to immigrants arriving at Ellis Island. Professional researchers recorded that "79% of the Italians, 80% of the Hungarians, 83% of the Jews, and 87% of the Russians are feebleminded." Rather than challenging the validity of the test, the results served to reinforce negative images of immigrants. (In 1917, Dr. Goddard and his associates used a version of the Binet test on 1.75 million army recruits and concluded that 40% of the white male population was feeble-minded.) His test was adopted by American superintendents to easily label persons with developmental disabilities.

Moral Viewpoint -"Of late we have recognized a higher type of defective, the moron, and have discovered that he is a burden; that he is responsible to a large degree for many if not all of our social problems." – Dr. Henry Goddard, 1915

Medical Viewpoint - In 1882 Congress passed the "Undesirables Act," which prevented convicts, paupers, the insane, and idiots from entering the United States. (Not until 1965 did Congress reverse its prohibitive legislation against the immigration of so-called feeble- minded persons or families with feeble-minded members.)

Panel 9

PERSONS WITH DEVELOPMENTAL DISABILITIES ARE MADE SCAPEGOATS FOR MANY OF SOCIETY’S PROBLEMS.

RESPONSES TO DISABILITY: Incarceration; sterilization; blame people with disabilities for social problems.

INVOLVEMENT BY PEOPLE WITH DISABILITIES: Victims of forced sterilizations and incarceration.

Medical Viewpoint - Using the case history of a resident in his institution named Deborah "Kallikak" (Kallikak being a fictitious name taken from the Greek words for "good" and "bad"), Dr. Henry Goddard learned that her great grandfather, Martin, was a Revolutionary War soldier of normal intelligence who had relations with a "feeble-minded" bar maid, producing a child. Later, Martin returned home to Philadelphia where he married a woman of the upper class. From this history, Goddard traced the lineage of Martin "Kallikak’s" upper class family, finding only successful, upstanding individuals of normal or better intelligence. Of Martin's lineage through his offspring with the bar maid, Goddard found criminals, prostitutes, and vagabonds: people of below normal intelligence.

Medical Viewpoint - Goddard's conclusion, which he published in his widely read book entitled The Kallikak Family, was that mental retardation is the root cause of many of our social problems, and that it is hereditary. Although his research methods were questionable, the book told many people what they wanted to believe: that people with disabilities could ruin the genetic strain.

Connection to Different Time in History - Similar research was published by other professionals, including Hill Folk by Davenport and Danielson; The Dack Family, by Finlayson; and Mongolian Virginians, the Win Tribe, by Estabrook and McDougle. The Almosts: A study of the feeble-mindedness was a popular text for emerging special educators. (The "Almosts" referred to the people with mental retardation as being almost human.) These studies supported similar conclusions to Goddard's research, and further stigmatized people with disabilities and their families. Not until many years later was Goddard's research rejected as invalid.

Connection to Different Time in History - The eugenic research of superintendents in the US had a direct influence on attitudes toward people with disabilities in Nazi Germany.

As American professionals were calling for sterilization, Nazi Germany was blaming people with disabilities for wasting valuable resources.

Medical Viewpoint - A popular belief at this time was that mental retardation and mental illness were completely genetic, and were the cause of most, if not all, social ills: poverty, drunkenness, prostitution, crime, and violence. The response was to segregate or sterilize all of these people so that they could not reproduce their "evil habits" and "destroy the gene pool.

As demand increased, institutions continued to grow larger and become more crowded.

Connection to Different Time in History - This overcrowding continued well into the 1970s

Medical Viewpoint - One case of sterilization came before the Supreme Court concerning a woman labeled "feeble-minded." Those who brought her to court produced a family tree, showing that the girl was already in the third generation of people with limited intelligence. Chief Justice Oliver Wendell Holmes proclaimed "three generations of imbeciles are enough," and he ordered sterilization. Later studies proved that the woman was in fact not "feeble-minded," and that her family tree was concocted.

Medical Viewpoint - In reaction to misguided fears about persons with developmental disabilities, and as a means of social control, the eugenics movement led to tens of thousands of forced sterilizations.

Medical Viewpoint - Billed as "A Eugenic Photoplay," this 1917 movie was taken from the headlines and even featured the real Dr. Haiselden, who refused to operate to save the lives of disabled infants. This controversy highlighted the public’s fear of disability and the power of doctors to choose who should live or die.

STEREOTYPE During the "genetic scare" of the 1920s, people with developmental disabilities were often the objects of fear, believed to be driven by rage and intent upon harming others. The fear of persons with physical deformities has long been popular in the media, with figures such as Quasimoto, Captain Hook, Dr. Strangelove, Frankenstein, and the Wolfman. In addition to typecasting persons with disabilities as villains, this stereotype contributes to our fear of persons with disabilities living in the community.

Panel 10

HOLOCAUST

PERSONS WITH DISABILITIES – OVER 200,000 – ARE THE FIRST VICTIMS OF THE HOLOCAUST.

"Most of the greatest evils that man has inflicted upon man have come through people feeling quite certain about something which, in fact, was false." — Bertrand Russell

SOCIETAL VALUES: Slight regard for people with developmental disabilities; concern with economic depression and war.

RESPONSES TO DISABILITY: (In the US) Abandonment in institutions; few services available in the community.

Medical Viewpoint - Beginning in the 1930s, Nazi Germany targeted people with disabilities and the elderly as a drain on public resources.

Medical Viewpoint - During the 1930s, people with disabilities in Germany are referred to as “useless eaters.”

Medical Viewpoint - In Nazi Germany, 908 patients were transferred from Schoenbrunn, an institution for retarded and chronically ill patients, to the euthanasia "installation" at Eglfing-Haar to be gassed. A monument to the victims now stands in the courtyard at Schoenbrunn. At the outbreak of World War II, Hitler ordered widespread "mercy killing" of the sick and disabled. The Nazi euthanasia program, codenamed Aktion T4, was instituted to eliminate "life unworthy of life."

Nazis sterilized 400,000 Germans and exterminated over 200,000 persons with disabilities.

Medical Viewpoint - At Hadamar Hospital in Germany, more than 10,000 people with disabilities were killed between January and August of 1941.

Medical Viewpoint - The first killings were by starvation, then by lethal injection. Gas chambers soon became the preferred method of execution. After being gassed, the bodies were cremated.

Medical Viewpoint - Doctors, not soldiers, were put in charge of killing the elderly and people with disabilities.

In Nazi Germany a Catholic bishop, Clemens von Galen, delivered a sermon in Munster Cathedral attacking the Nazi euthanasia program calling it "plain murder." In 1941, Hitler suspended Aktion T4, which had accounted for nearly a hundred thousand deaths by this time. The euthanasia program quietly continued using drugs and starvation instead of gassings.

Moral Viewpoint - As a final act of abandonment, tens of thousands of people who died in our state institutions were buried anonymously, in graves marked only by numbers. People of the time believed having names on the grave markers would be an embarrassment to the families of the deceased.

Connection to Different Time in History - In 1994, a group of self-advocates and allies began a project called Remembering with Dignity to place names on the numbered graves at Minnesota’s institutions, and to get an apology from the state for years of abuse, neglect, and abandonment.

Panel 11

ABANDONMENT

SERVICES SLOWLY BECOME AVAILABLE TO PERSONS WITH PHYSICAL DISABILITIES; MANY WITH DEVELOPMENTAL DISABILITIES ARE LARGELY FORGOTTEN AND ABANDONED IN INSTITUTIONS.

"Euthanasia through neglect." – Albert Deutsch

INVOLVEMENT BY PEOPLE WITH DISABILITIES: Beginning of organized advocacy by people with physical disabilities; little or no involvement by people with developmental disabilities.

Medical Viewpoint - Inmates of institutions had no rights, no dignity, and no privacy.

As the institutions grew in size they became increasingly medicalized.

Connection to Different Time in History - A group in New York City called the League for the Physically Handicapped formed in 1935 and protested militantly against job discrimination in the New Deal program, asserting that WPA (Works Progress Administration) policies which labeled them as "unemployable" because of their disabilities were highly prejudicial. They eventually generated a few thousand jobs nationwide.

Medical Viewpoint - As the U.S. entered World War II, many attendants at public institutions were drafted, leaving a shortage of workers. Enrollment continued to increase. The result was a much smaller work force with greater numbers of inmates under one roof.

Medical Viewpoint - Some institutions put two residents to a bed and in hallways.

Connection to Different Time in History - To make up for the shortage in workers, many institutions used conscientious objectors: persons who refused to take part in warfare because their conscience prohibited participation in acts of killing. Many of these men kept records of the abuse they witnessed in the institutions and later reported their findings.

Medical Viewpoint - In 1948, Albert Deutsch wrote Shame of the States, a photographic expose of the Letchworth Village institution in New York. After decades of invisibility, persons living in institutions were again the objects of attention.

Medical Viewpoint - In the early 1930s, John Daggy, age four (seated in the center, hands together), along with his older sister, was sent to a large institution in Faribault, Minnesota. During his first day he witnessed his sister receiving a lobotomy. Like many other residents of institutions at this time, John was admitted because of economic difficulties in his family. He escaped at age 18, going on to marry and raise a family in St. Paul.

Connection to Different Time in History - In the mid-1990s John Daggy became involved in self-advocacy, working with the Remembering with Dignity project to honor those who lived and died in state institutions.

Social Viewpoint - The Depression Era put a financial strain on all Americans, particularly those with special needs. Millions of Americans just wanted the opportunity to work.

Connection to Different Time in History - Though used primarily for labeling persons with physical disabilities, the term "handicapped" has been applied to all persons with disabilities, and became an increasingly popular term in the middle-20th century. The term does not originate with persons with disabilities begging for money with their caps in hand. It originally referred to a match between two horses, in which an umpire decided the extra weight to be carried by the superior horse; later, it applied to extra weight itself, and so to any disability or disadvantage in a contest. With time, "handicapped" assumed negative associations, in particular that of the helpless victim.

Medical Viewpoint - Out of 35,000 photographs of Franklin Delano Roosevelt at the Hyde Park Library, only two show him seated in his wheelchair; he went to great lengths to hide and "overcome" his disability. Reportedly, when the actor Orson Welles was dining at the White House, President Roosevelt said to him, "You and I are the two finest actors in America."

Connection to Different Time in History - The idea of overcoming one’s disability is still used as a popular appeal in fundraising campaigns.

Panel 12

PARENTS ORGANIZE

PARENTS ASSERT THEIR LEADERSHIP AND BEGIN TO ORGANIZE ON BEHALF OF CHILDREN WITH DISABILITIES.

SOCIETAL VALUES: Greater acceptance of differences; willingness and ability to address social problems.

Moral Viewpoint - Parents of children with disabilities began organizing in the 1930s. By 1950, following the interruptions of economic depression and war, 88 local groups with a total membership of 19,300 persons had been established in 19 states. In September of 1950, the National Association for Retarded Children was formed during a conference in Minneapolis, MN.

Connection to Different Time in History - At the insistence of persons with disabilities, the organization later changed its name to the National Association for Retarded Citizens. It is now known as The Arc.

Moral Viewpoint - Elizabeth Boggs was an early leader in the Parents Movement and one of the people responsible for creating the term "developmental disabilities."

Connection to Different Time in History - The term "developmental disability" was adopted in the early 1970s to address disability and funding issues in more comprehensive terms. It originally referred to "persons with a range of disabilities, including mental retardation, cerebral palsy, epilepsy, and other neurologically handicapping conditions." The term, intended to qualify persons for funding, was expanded in 1978 to cover a wider area of disabilities and life activities

STEREOTYPE: Persons with developmental disabilities as eternal children: viewed as children who never grow up, capable of doing no wrong and wanting only to be loved. This message was reinforced in the early Parents Movement’s focus on "helping the retarded child." The concept of Mental Age – equating one’s IQ with years of age – further reinforced this stereotype.

Moral Viewpoint - Dale Evans Rogers' book Angel Unaware and Pearl S. Buck's The Child Who Never Grew, both widely read, perpetuated the view of all persons with developmental disabilities – young and old – as eternal children. The message of these books was two-fold: all families, rich or poor, can have children with disabilities, and persons with mental retardation are really just "children." Buck placed her child in an institution. Dale Evans Rogers' child died very young; she suggested that children with mental retardation are special angels, serving a divine purpose that is lost in institutions.

At her brother's request, Eunice Kennedy Shriver authored an article that appeared in the Saturday Evening Post, talking about their sister Rose (who has mental retardation) and how their family adjusted. The article was read by millions, and further convinced parents that having a child or sibling with mental retardation was nothing to feel shame or guilt over.

Moral Viewpoint - At first, parents came together a few at a time, usually in someone's home.

Moral Viewpoint - In one state, a parent looked for support by placing an advertisement in the local newspaper. The newspaper initially declined to print the ad, feeling it was too controversial. After it was finally printed, the parent received over one thousand replies.

Moral Viewpoint - Beyond parents offering support to one another, these groups fought for institutional reform, community services, and better education for their children.

Medical Viewpoint - The themes of "eternal child" and "objects of pity" have been taken to their extremes by the annual Jerry Lewis Muscular Dystrophy Telethon, with its relentless appeals to pity and heart wrenching images of helpless poster children needing to be "cured" rather than accepted by society.

Connection to Different Time in History - Disability activists have written and spoken out against the use of pity images in fundraising campaigns. Some activists have held their own antitelethons, promoting disability pride and culture over low expectations and paternalism. In the early 1990s, a Chicago-based group called Jerry’s Orphans was started by former MDA poster children.

Panel 13

ADVOCACY BY PARENTS LEADS TO INCREASED FUNDING, BETTER COMMUNITY SERVICES, AND LARGER INSTITUTIONS.

"I shall tell you a great secret, my friend. Do not wait for the last judgment. It takes place every day." – Albert Camus

RESPONSES TO DISABILITY: Advocacy for improved institutions and better community services; increased funding for research; parents and professionals begin listening to people with disabilities.

Social Viewpoint - The concept of "normalization" originated in Denmark in the late 1950s. It meant quite simply allowing persons who lived in institutions to enjoy a normal rhythm of the day. As Benjt Nirje put it, "Making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society." Combined with the continuing stories of abuse and neglect in institutions, the normalization principle helped to convince people that individuals with disabilities belong in the community.

Medical Viewpoint - In 1962, President Kennedy formed the President's Panel on Mental Retardation. At this time, the medical profession was considered the final authority on mental retardation and other disabilities. Consequently, the Panel consisted primarily of medical professionals, with an emphasis on prevention and treatment.

Medical Viewpoint - Because of the success of parent advocacy, many states poured money into building new and larger state institutions to meet the increasing demand for services. Between 1964 and 1968, $67,500,000 was allocated for new construction. New buildings were designed to take advantage of discoveries in medicine and operational efficiency.

Medical Viewpoint - Institutions, professionals had determined, offered the most appropriate and efficient way to serve people. But the number of persons living in a single institution was still high – as many as 6,000 at Rome State School in New York. Staff-to-resident ratios were as high as fifty-to-one. New facilities served to accommodate more individuals with developmental disabilities, but the "medical model" of treatment did not change.

Social Viewpoint - By the late 1960s, it was becoming increasingly clear that public institutions were failing to meet even the most basic human needs of the people they were intended to serve.

Gradually, the character of the Parent Movement changed as persons with disabilities, the primary "consumers" of disability services, assumed a more active role in fighting for their rights.

Medical Viewpoint - Niels Erk Bank-Mikkelsen, the director of the Danish national services for mental retardation, visited a state institution in California in the 1960s. His report was read across the country. "I couldn't believe my eyes. It was worse than any institution I have seen in visits to a dozen foreign countries. . . . In our country, we would not be allowed to treat cattle like that."

Medical Viewpoint - In 1965, Senator Robert Kennedy toured the Willowbrook State School in New York. Accompanied by a T.V. crew, he compared the conditions of the institution to that of a snake pit. The next year, Dr. Burton Blatt and photographer Fred Kaplan used a hidden camera to capture life inside of Willowbrook. Their photographic essay, Christmas in Purgatory, was published in Life magazine, drawing the largest amount of reader response in the magazine's history. Dr. Blatt declared that "there is a hell on earth, and in America there is a special inferno" - the institution.

Connection to Different Time in History - Beginning in the late 1960s, and gaining momentum in the ’70s and ’80s, many parents were fighting, along with their children, for the closure of institutions and for better services in their communities.

Social Viewpoint - Originally intended as desegregation for students with disabilities, "mainstreaming" often meant dumping students with disabilities into public schools, putting them in regular classes with no supports, or isolating them in special, separate classes for most of the day. As a response to the empty promise of mainstreaming, parents and activists began to call for "integrated" and "inclusive" schools, with students with disabilities participating in the same classroom as nondisabled students.

Panel 14

CIVIL RIGHTS

INFLUENCED BY THE CIVIL AND HUMAN RIGHTS STRUGGLES OF THE 1950S AND 1960S, PEOPLE WITH DISABILITIES BEGIN TO FIGHT FOR THEIR RIGHTS.

We’re chained to the world and we all gotta pull." - Tom Waits

Social Viewpoint - The Civil Rights Movement focused national attention on the rights of disadvantaged groups.

Connection to Different Time in History - As civil rights activists were asserting their status as equal citizens, self advocates were beginning to fight for recognition as people first, with their disability considered second.

Social Viewpoint - Just as the Civil Rights Movement mobilized thousands of activists across the country, the Disability Rights Movement has appealed to people from all communities: women and men, children and adults, young and old, straight and gay, rich and poor.

Connection to Different Time in History - 80% of people will experience disability at some time in their lives.

Social Viewpoint - The Civil Rights movement was underway, with Dr. Martin Luther King, Jr. calling for "children [who] will one day live in a nation where they will not be judged by the color of their skin but by the content of their character."

Connection to Different Time in History - Inspired by the many human and civil rights movements of the 1960s and 1970s, activists in the Disability Rights movement have taken control of disability issues, demanding freedom, equality, and justice for all citizens.

Social Viewpoint - Also at this time was the beginning of the Women's Movement, which alerted our country to the fact that one-half of our citizens are discriminated against on the basis of gender alone.

Social Viewpoint - Activist Judy Heumann, who became a member of the Clinton administration, speaks out with passion at a hearing during the battle over Section 504 of the Rehabilitation Act.

Social Viewpoint - As it was in the Middle Ages, disability is still largely a poverty issue. The unemployment rate for people with disabilities is over 65%.

As Rosa Parks fought for the rights of African Americans to sit at the front of the bus, disability rights activists are fighting just to get on the bus.

Social Viewpoint - Ed Roberts, a post-polio quadriplegic, entered the University of California at Berkeley in 1964 and effectively began the Disability Rights Movement. With the support of his organizer mom, Zona, Ed fought the university and the State Department of Vocational Rehabilitation. He got the press on his side, championing his cause. When Ed won this battle, a local newspaper carried the headline, "Hopeless Cripple Goes to School."

Social Viewpoint - "I am convinced that we are making the most profound social change that our society has ever known." - Ed Roberts, 1990

Connection to Different Time in History - Whenever you use a curb cut, think of Ed Roberts and the work of activists in the Disability Rights Movement

Panel 15

DISABILITY IS NO LONGER LIMITED TO MORAL OR MEDICAL DEFINITIONS; IT IS NOW VIEWED BY MANY AS A SOCIAL CONSTRUCT.

RESPONSES TO DISABILITY: Greater understanding of disability from a social perspective; listen to people with disabilities; make accommodations in the community.

INVOLVEMENT BY PEOPLE WITH DISABILITIES: Advocates and activists; leaders and organizers; participants.

"Power concedes nothing without a demand. It never had and it never will." – Frederick Douglass

Social Viewpoint - One of the most important pieces of legislation during the 1970s was the Rehabilitation Act of 1973. Section 504 of this act made it illegal for any federal agency, public university, defense or other federal contractor, or any other institution that received federal funding to discriminate against anyone solely on the basis of disability. The language of Section 504 was the same as that of the Civil Rights Act of 1964.

Social Viewpoint - During the March 1988 revolt at Gallaudet University, students demanded that their new college president be Deaf.

Dr. I. King Jordan was eventually named the new president.

"Together we must remove the physical barriers we have created and the social barriers we have accepted." - President George Bush, on signing the Americans with Disabilities Act.

Modeled after the 1964 Civil Rights Act, the ADA created broad civil rights protection for people with disabilities. It is the first comprehensive federal law to address the discrimination against an estimated 54 million Americans with disabilities in the areas of employment, public service and accommodations, and telecommunications.

Connection to Different Time in History - Accommodations, like the TTY machine, are making communities accessible for all citizens.

"The Americans with Disabilities Act is the world's first declaration of equality for people with disabilities by any nation. It will proclaim to America and to the world that people with disabilities are fully human; that paternalistic, discriminatory, segregationist attitudes are no longer acceptable; and that hence forth people with disabilities must be accorded the same personal respect and the same social and economic opportunities as other people." — Justin Dart

ADAPT (formerly American Disabled for Accessible Public Transit, now American Disabled for Attendant Programs Today) represents the militant side of the Disability Rights movement. They protest and educate about the inhumane conditions people with disabilities – and the elderly – receive in nursing homes. ADAPT members have shown that it is less expensive and much healthier for people to live in the community rather than in nursing homes or other institutions.

Panel 16

PEOPLE WITH DISABILITIES FACE NEW OPPORTUNITIES AND THREATS AS AMERICA’S LARGEST MINORITY.

"Americans with Disabilities don't want your pity or your lethal mercy. We want freedom. We want LIFE." — Not Dead Yet

Social Viewpoint - A 1991 survey (Public attitudes toward People with Disabilities, Louis Harris), found that "pity, embarrassment, fear, anger, and resentment are the marks of a people whose conscience is bothering them and who desperately need to learn how to treat those with disabilities with equality."

Social Viewpoint - Valerie Schaaf, one of the early leaders in self-advocacy. Inspired by the advocacy and civil and human rights groups of the 1960s, and formed partly in reaction to professional and parental attitudes, self-advocacy groups formed their own organizations at the local, state, and national levels.

Social Viewpoint Rev. Wade Blank, one of the founders of ADAPT.

Connection to Different Time in History - In the Self-Advocacy Movement, the role of the support person is an important accommodation. Some people need assistance with personal care and transportation; in Self-Advocacy, this relationship may be that of advisor, facilitator, or friend. The key to this role is to support, not control.

Social Viewpoint - Self-advocacy means advocating for one's self, standing up for one's rights. For thousands around the world it is also a term of personal identity, focusing on one's political power and right to self-determination. It is also a growing civil rights movement, representing women and men of all races, colors, and religions who have been systematically neglected, abused, incarcerated, and misunderstood for most of history.

Connection to Different Time in History - Back in the 1940s, Jacobus ten Broek changed the name of the Federation for the Blind to the Federation of the Blind. In similar fashion, the self-advocacy movement was telling parents it was now time for people to speak for themselves.

Social Viewpoint - Most professionals and parents believed that persons with developmental disabilities should be protected at all costs. Dr. Benjt Nirje disagreed: "To be allowed to be human means to be allowed to fail." By listening to people with developmental disabilities, Dr. Nirje and others discovered that individuals themselves, not professionals and parents, know best what they want in life.

Social Viewpoint - In response to continuing images of pity, particularly in telethons, selfadvocates helped to redefine the disability problem by asserting it as a matter of rights, not charity.

Self-advocacy groups have recognized the need for support – through advice, encouragement, assistance with daily living and transportation – and have described the role of the support person as that of advisor, facilitator, and friend. The relationship is one of mutual trust, understanding, and respect. The key to being an effective support person is to support, not control.

Medical Viewpoint - Psychiatric survivors, activists, and allies protest incarceration and forced treatment, including electroshock and psychotropic drugs.

Connection to Different Time in History to Medical Viewpoint - Jack Kevorkian, the former Michigan pathologist who illegally practiced "physician-assisted suicide." "Dr. Death," as he was tagged by many activists in the disability community, finally went too far and killed Thomas Youk on video, administering a lethal drug for the prime time audiences of "60 minutes." In March 1999, Kevorkian was convicted of second-degree murder and delivery of an uncontrolled substance. He is now in jail, serving 10-25 years.

Social Viewpoint Professor Peter Singer, appointed head of the Bio-Ethics Department of Princeton University, has theorized that "killing a disabled baby is not the moral equivalent of killing a person."

Connection to Different Time in History - Many activists with disabilities see Dr. Singer’s argument as a slippery slope back to the Eugenics Movement.

Panel 17

SELF-ADVOCACY

PERSONS WITH DEVELOPMENTAL DISABILITIES ADVOCATE FOR THEMSELVES AND OTHERS WITH DISABILITIES, PROCLAIMING "WE ARE PEOPLE FIRST!"

RESPONSES TO DISABILITY: Increased employment and educational opportunities; greater inclusion of people with disabilities in the community.

SOCIETAL VALUES: Self-determination and freedom of choice; celebration of diversity.

Social Viewpoint - One way that self-advocates have redefined the "disability problem" is through reclaiming the language used to describe them. If disability is important in describing someone, it should be secondary to the person. Rather than "disabled people," self-advocates prefer "people with disabilities." Better yet, don't mention the disability at all unless it's relevant to the situation.

Social Viewpoint - Some self-advocates have objected to the Special Olympics and its method of treating people with disabilities as "eternal children" and "objects of pity." For many, the word "special" has come to mean different and less than.

"We are people first." Many self-advocacy groups call themselves People First in honor of this principle.

Social Viewpoint - Self-advocates in Minneapolis organized and picketed for the right to hold a union election at their workshop. Workers not only demonstrated their ability to speak for themselves, but also recognized the importance of economic justice. Many sheltered workers at this time were paid less than $1.00 per hour, with no vacation or sick leave. (The workshop would not even let the workers vote on whether to have union representation, but through legislation, self-advocates did win $35,000 in back pay.)

Social Viewpoint - "Self-advocates effect change through helping others." — Perry Whittico

Social Viewpoint - An important goal in self-advocacy is closing institutions. "Institutions remove all of the things worth living for — joy, happiness, love, tenderness, feelings, emotions — and make you give up on life itself. As self-advocates we must close down every institution and liberate our unfortunate brothers and sisters who are now wasting away."

Connection to Different Time in History - There are still tens of thousands of people with disabilities in institutions, and thousands more in nursing homes.

Social Viewpoint - Self-advocates in Connecticut held a press conference from within the Southberry Training School, an institution they wanted to close. Three TV networks covered the event, and the show "60 minutes" later did an investigative report on Southberry.

Social Viewpoint - "We have the right to participate in the community, attend our public schools, and grow up with other children. We must have the opportunity to do the same things as everyone else and to share the joys of daily living."

Social Viewpoint - Many self-advocacy groups serve a social function, bringing people with developmental disabilities together in an environment where they can speak openly with people they trust. Other groups have developed the sophistication and resources to take on large issues, like fighting for "real" health care for people with disabilities.

We must be listened to as we express ourselves, and we must be allowed to make our own mistakes. We must help those who have higher support needs and cannot speak for themselves, so their decisions can be understood and respected.

"There are a thousand hacking at the branches of evil to one who is striking at the root." – Henry David Thoreau

Panel 18

THOUSANDS OF SELF-ADVOCATES ACROSS THE WORLD SPEAK FOR THEMSELVES AND FIGHT FOR SOCIAL CHANGE.

WE ARE PEOPLE FIRST!

"No one can make you feel inferior without your consent." – Eleanor Roosevelt

"Let us fail, so we can learn from our mistakes. We’re only human – everyone makes mistakes." -- James Meadours

Social Viewpoint - Individual and group leadership is being developed as self-advocates speak up, make their own choices, and work together for social change.

Social Viewpoint - Like other civil rights movements, the self-advocacy movement — through many independent groups — has identified issues and developed strategies for creating change.

Social Viewpoint - All people have the right to be valued as equals in their community. We must not be discriminated against because of our disability. Other people must learn that we are people and treat us in the same way as everyone else.

Social Viewpoint - Self-advocates have shown us that an education, an opportunity for real employment, and privacy in our home are rights, not privileges; they do not come from the kindness of strangers during telethons, but from the fact that we are human beings.

Social Viewpoint - Irving Martin, the "Godftather of Self-Advocacy in Minnesota," pushed parents, professionals, and other self-advocates to take responsibility for increasing the quality of life for all people with disabilities. "Life is a 50/50 thing. People need to be out there in the community, to the best of their abilities."

Green Box - On June 22, 1999, the Supreme Court ruled in Olmstead v. L.C. that under the Americans With Disabilities Act (ADA), unjustifiable institutionalization of a person with a disability who, with proper support can live in the community, is discrimination. The case was brought by two Georgia women whose disabilities include mental retardation and mental illness. At the time the suit was filed, both plaintiffs lived in State-run institutions. The Court stated directly that "Unjustified isolation . . . is properly regarded as discrimination based on disability."

Social Viewpoint - "Who is in charge of your life?" Roland Johnson raised this issue of self-determination by focusing on control and decision- making.

Social Viewpoint - Self-Advocates have been the vanguard in the fight to close institutions and move people with disabilities into the community. Self Advocates Becoming Empowered (SABE), a national self-advocacy organization, has launched a "Close the Doors" campaign, fighting for the release of our brothers and sisters from institutions throughout the US.

Panel 19

ACTIVISTS REMEMBER THE PAST AND WORK TO ENSURE THAT CRIMES AND MISTAKES ARE NOT REPEATED.

"The struggle against power is the struggle of memory against forgetting." – Milan Kundera

"We are just beginning to uncover a hidden history." – Paul K. Longmore

INVOLVEMENT BY PEOPLE WITH DISABILITIES: Leaders, employees, students, activists, educators, historians, artists, cultural workers.

Social Viewpoint - In Germany, recognition that the Holocaust claimed the lives of thousands of people with disabilities.

Social Viewpoint - In Minnesota, people who lived and died in institutions, buried with only a number, are honored and remembered with proper headstones.

People forgotten in institutions are remembered, with dignity and respect.

Social Viewpoint - The lives of people with disabilities are acknowledged and celebrated.

Social Viewpoint - Herbert Spencer argued the concept of "survival of the fittest" through his Social Darwinism. Disability activists have put a new spin on evolution.

Social Viewpoint - Not Dead Yet comprises activists, advocates, and allies who protested the actions of Jack Kevorkian and who continue to fight against legalizing physician-assisted suicide. NDY is also a strong voice against the appointment of Peter Singer to the Bio-Ethics Department at Princeton University, the group is also working to promote adequate health care, especially around issues of pain relief and long-term care.

Panel 20

NAMING AND CLAIMING WHO WE ARE, WHERE WE COME FROM, AND WHERE WE WANT TO GO.

DISABILITY CULTURE

Social Viewpoint - Covering the news, creating the news.

Social Viewpoint - Within the broader disability rights movement, there has been a shift from rights to an emphasis on disability culture. Dr. Paul Longmore, a professor of disability studies, has noted that the disability rights approach is still in some sense rooted in the assumption that disability is less desirable. By contrast, disability culture asserts that disability is not to be hidden, healed, or even overcome. Disability is a culture, full of shared history and experiences that should be honored and practiced.

Social Viewpoint - Barbie's new friend in a wheelchair, named after activist Becky Ogle. Many activists hated the "Share A Smile" moniker and she's now known simply as Becky.

Social Viewpoint - Defining and re-imagining ourselves.

Social Viewpoint - Remembering our heroes.

Panel 21

WORKING TOWARD A COMMON VISION

DISABILITY IS AN ART.

Social Viewpoint - Celebrating disability arts & culture at Disability Pride ’94, an anti-telethon in St. Paul, Minnesota.

Social Viewpoint - The groundbreaking Wry Crips Disabled Women’s Theatre Group from Berkeley, California.

Social Viewpoint - The late comedian Ben Stuart: "I’m one of Jerry’s Kids. Well, one of Jerry Garcia’s kids."

Social Viewpoint - Actor/Playwright Neil marcus: "Disability is an art."

DISABILITY IS A UNIQUE WAY OF LIFE.

Social Viewpoint - Celebrating who we are and where we come from, while organizing for lasting change.

Social Viewpoint - Lee Williams: "Disability – it’s about culture."

Social Viewpoint - Expanding our understanding of disability.

Social Viewpoint - Internationally recognized journalist, writer, and broadcaster John Hockenberry.

Social Viewpoint - Rev. Dave and the Church of 80% Sincerity.

Social Viewpoint - The reigning Queen Mother of Gnarly, Cheryl Marie Wade, has written powerfully and poetically on disability culture. Her essay, Disability Culture Rap, was made into an experimental documentary of the same name.

CRIPPLE LULLABY

I’m trickster coyote in a gnarly-bone suit
I’m a fate worse than death in shit-kickin’boots

I’m the nightmare booga you flirt with in dreams
‘Cause I emphatically demonstrate: It ain’t what it seems

I’m a whisper, I’m a heartbeat, I’m "that accident," and goodbye
One thing I am not is a reason to die.

I’m homeless in the driveway of your manicured street
I’m Evening Magazine’s SuperCrip of the Week

I’m the girl in the doorway with no illusions to spare
I’m a kid dosed on chemo, so who said life is fair

I’m a whisper, I’m a heartbeat, I’m "let’s call it suicide," and a sigh
One thing I am not is a reason to die

I’m the poster child with doom-dipped eyes
I’m the ancient remnant set adrift on ice

I’m that Valley girl, you know, dying of thin
I’m all that is left of the Cheshire Cat’s grin

I’m the Wheelchair Athlete, I’m every dead Baby Doe
I’m the Earth’s last volcano, and I am ready to blow

I’m a whisper, I’m a heartbeat, I’m a genocide survivor, and Why?
ONE thing I am not is a reason to die.

I am not a reason to die.
– Cheryl Marie Wade

Panel 22

CONNECTION TO A DIFFERENT TIME IN HISTORY - SEEKING FULL PARTICIPATION
Connection to a different time in history - Realizing the promise of integration, productivity, independence, and quality of life choices.

We watch the City fall down
But we pick it up
The Cost of Freedom
We pick it up
Nothing said
We pick it up
We watch the City fall down
We pick it up
Because of Freedom
We walk hand in hand
God Save Ameriica
We pick it up
We watch the City fall down
We pick it up
See the Capital Standing strong
Because of Freedom
We pick it up
We are Ameriican
We pick it up
Because of Freedom
We pick it up
Long live Freedom
We pick it up
Long live Freedom
We pick it up
– Chester Finn


Social Viewpoint - September 11, 2001 began as a beautiful day. In the aftermath of the terrorist attacks nearly 3,000 people were killed, thousands more injured. Remarkably, all New Yorkers who received supports though the developmental disabilities service system survived. Self-advocate and New Yorker Tony Philips spoke for many when he said, “We are here to pick the city back up.”

Social Viewpoint - Approximately 874,000 full-time equivalent direct support professionals (DSPs) across the United States provide guidance and support to people who need help becoming self-sufficient. The U.S. Department of Health and Human Services estimates that by 2020, the number of fulltime DSPs must grow to 1.2 million to support the 1.4million individuals with intellectual and developmental disabilities with needed residential, vocational, and other supports.




Social Viewpoint - Our voices and our votes count.




Social Viewpoint - People with disabilities assert their rights to freedom of religious and spiritual expression.


Social Viewpoint - In September 2003, over 200 ADAPT members and supporters marched and rolled from the Liberty Bell in Philadelphia to Washington, DC, building support for MiCASSA, the Medicaid Community-based Attendant Services and Support Act.


Social Viewpoint - Terri Shiavo collapsed in 1990 from cardiac arrest, resulting in severe brain damage. Within three years, doctors said she was in a “persistent vegetative state” with little chance of recovery. Terri's husband fought to have her feeding tube removed, honoring her wishes not to be “kept on a machine” with no hope of recovery. Terri's family and many supporters from the disability community challenged this petition and fought for years to keep Terri alive. After fourteen court appeals and many motions, petitions, and court hearings, her feeding tube was removed in March 2005. She died thirteen days later.


Social Viewpoint - This online newsletter, written and published by self-advocates, reaches thousands of people through the Internet. Self-advocacy has entered the digital age.




Social Viewpoint - Hurricane Katrina hits the Gulf coast in late August 2005, causing thousands of deaths and destruction across costal regions of Louisiana, Mississippi, and Alabama. Federal relief efforts are slow and poorly organized. The Center for Independent Living in Biloxi, MS is totally destroyed.


Social Viewpoint - In June 2002, the Supreme Court reversed an earlier ruling and held that the death penalty constituted "cruel and unusual punishment" to persons with intellectual disabilities. Still, people with intellectual disabilities are at a higher risk of wrongful convictions and death sentences, often because they want to please the authorities by confessing falsely or, because of stigma, they do not want to disclose their disability.
In the case of Johnny Lee Wilson, Johnny was trying to please the police officers by telling them what he thought they wanted to hear. That is, he confessed. I think that it is important to remember that in trying to please the police officers you should not say something that is not true, or incriminate yourself. Incriminate means saying something that would make you guilty of a crime. —
Missouri People First


Connection to a different time in history - “The powerful play goes on – and you may contribute a verse. What will your verse be?”
— author unknown

Panel 23

CONNECTION TO A DIFFERENT TIME IN HISTORY: COMMUNITY INTEGRATION FOR EVERYONE

Social Viewpoint - In 2010. the Home and Community Based Services (HCBS) waiver program was amended to ensure that individuals receiving services and supports through the federal Medicaid HCBS programs have full access to the benefits of community living, and are able to receive services in the most integrated setting.

Social Viewpoint - As the Olmstead Ruling becomes understood, its call for integration is changing society. The old structures of segregation are under attack. Sheltered workshops, facility-based day programs, state-run institutions, and group homes are all being challenged and phased out, in favor of programs and support for integrated living and working.

Social Viewpoint - The United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities in 2007. It was the first major human rights treaty of the 21st century. By 2014, 143 countries had ratified, including all the countries of North America except the United States. While President Barack Obama signed the CPRD in 2009, the US Senate had failed to ratify it as of 2014.

Spread the Word to End the Word

Social Viewpoint - In 2008, the movie “Tropic Thunder” sparked nation-wide protests to stop using disability labels as put-downs, especially the R-word.

Social Viewpoint - In 2011, Alabama became the first state in the South and the twelveth state overall to close all their state operated institutions. That left 29,909 people with intellectual and developmental disabilities who were still living in state-run institutions nationwide (compared with 108,165 persons in 1965 and 223,590 persons in 1965).

Connection to a different time in history - Olmstead Decision Ripples Through Society, Expanding Integration

Social Viewpoint - In 2011, only 19.3% of people with intellectual and developmental disabilities participated in integrated employment services. By 2014,11 states passed ‘Employment First’ legis lation, where employment in the general workforce in the first and preferred outcome, regardless of the level of disability.

Social Viewpoint - West Virginia is the first state to pass a bill requiring students in the K-12 public school system to study Disability History.

Connection to a different time in history - “If you believe people have no history worth mentioning, its easy to believe they have no humanity worth defending.”
-William Loren Katz

Social Viewpoint - Jenny Hatch, a woman with Down syndrome in Virginia, won a lawsuit against her parents. A judge declared that she can live the life she wants, rejecting a guardianship request from her parents that would have allowed them to keep her in a group home against her will.

Social Viewpoint - A class action lawsuit charged Oregon with violating the ADA and the Rehab Act. The reason: the state did not provide supported employment services to more than 2,300 people with disabilities who work in segregated sheltered workshops.

Social Viewpoint - The ISO (International Organization for Standardization) accepts the Web Content Accessibility Guidelines.