The contemporary conception of disability proposed in the WHO International Classification of Functioning, Disability and Health (ICF) views disability as an umbrella term for impairments, activity limitations and participation restrictions. Disability is the interaction between individuals with a health condition (e.g. cerebral palsy, Down syndrome or depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation, or limited social supports). Long ago there was great confusion over the meaning of terms such as impairment, handicap, or disability. Then, in 1980, the WHO provided great service by offering a clear way of thinking about it all in a little book called “International Classification of Impairments, Disabilities and Handicaps”. All these terms refer to the consequences of disease, but consider the consequences at different levels. The disease produces some form of pathology, and then the individual may become aware of this: they experience symptoms. Later, the performance or behaviour of the person may be affected, and because of this the person may suffer consequences such as being unable to work.
In this general scenario, Impairment was defined as “any loss or abnormality of psychological, physiological, or anatomical structure or function.” Impairment is a deviation from normal organ function; it may be visible or invisible (screening tests generally seek to identify impairments). Disability was defined as “any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.” Impairment does not necessarily lead to a disability, for the impairment may be corrected. I am, for example, wearing eye glasses, but do not perceive that any disability arises from my impaired vision.
A disability refers to the function of the individual (rather than of an organ, as with impairment). In turn, Handicap was defined as “a disadvantage for a given individual, resulting from impairment or a disability that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.” Handicap considers the person’s participation in their social context. For example, if there is a wheel-chair access ramp at work, a disabled person may not be handicapped in coming to work there. Here are some examples:
Impairment – Speech production; Disability – Speaking clearly enough to be understood; Handicap – Communication I – Hearing; D – Understanding; H – Communication
I – Vision; D – Seeing; H – Orientation
I – Motor control, balance, joint stiffness; D – Dressing, feeding, walking; H – Independence, mobility I – Affective, cognitive limitations; D – Behaving, interacting, supporting; H – Social interaction, reasonableness Here is a diagram that suggests possible parallels between the impairment, disability & handicap triad, and the disease, illness and sickness triad. (The squiggly arrows are intended to indicate a rough correspondence)
“Patients do not come to their physicians to find out what ICD code they have, they come to get help for what is bothering them.” A Positive Perspective? Quality of Life and the International Classification of Function The focus on disability takes a somewhat negative approach to health, perhaps not unreasonable since doctors are supposed to cure diseases. But starting in the 1980s clinicians began to set goals to achieve when the disease could not be cured, beyong merely controlling symptoms. The notion of Quality of Life gained prominence as a way to emphasize a positive perspective on health – health as a capacity to function and to live, even if the patient has a chronic condition.
A central aim of care was to enhance the quality of the patient’s function, and hence their ability to life as normal a life as possible, even if the disorder could not be cured. This notion was a further extension of handicap, covering maintenance of normal function, but adding psychological well-being and, if possible, positive feelings of engagement. Measurements of quality of life extend the disability focus beyond the ability to perform “activities of daily living” to include a broad range of functioning (work, home, play) and also the person’s feelings of satisfaction and well-being. This is necessarily a qualitative and subjective concept, judged by the patient in terms of the extent to which they are able to do the things they wish to do. In this medical context, quality of life is distinct from wealth or possessions, and to amke this clear you may see the term “health-related quality of life.”
Reflecting these evolving ideas, the WHO revised its Impairment, Disability and Handicap triad in 2001, re-naming it the International Classification of Function (ICF). This classification system provides codes for the complete range of functional states; codes cover body structures and functions, impairments, activities and participation in society. The ICF also considers contextual factors that may influence activity levels, so function is viewed as an interaction between health conditions (a disease or injury) and the context in which the person lives (both physical environment and cultural norms relevant to the disease). It establishes a common language for describing functional states that can be used in comparing across diseases and countries. The ICF therefore uses positive language, so that “activity” and “participation” replace “disability” and “handicap.” The ICF is described on the WHO web site.
Impairment, Disability and Handicap
Sheena L. Carter, Ph.D.
The words “impairment,” “disability,” and “handicap,” are often used interchangeably. They have very different meanings, however. The differences in meaning are important for understanding the effects of neurological injury on development.
The most commonly cited definitions are those provided by the World Health Organization (1980) in The International Classification of Impairments, Disabilities, and Handicaps:
Impairment: any loss or abnormality of psychological, physiological or anatomical structure or function.
Disability: any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.
Handicap: a disadvantage for a given individual that limits or prevents the fulfillment of a role that is normal
As traditionally used, impairment refers to a problem with a structure or organ of the body; disability is a functional limitation with regard to a particular activity; and handicap refers to a disadvantage in filling a role in life relative to a peer group.
Examples to illustrate the differences among the terms “impairment,” “disability,” and “handicap.”
1. CP example: David is a 4-yr.-old who has a form of cerebral palsy (CP) called spastic diplegia. David’s CP causes his legs to be stiff, tight, and difficult to move. He cannot stand or walk.
Impairment: The inability to move the legs easily at the joints and inability to bear weight on the feet is an impairment. Without orthotics and surgery to release abnormally contracted muscles, David’s level of impairment may increase as imbalanced muscle contraction over a period of time can cause hip dislocation and deformed bone growth. No treatment may be currently available to lessen David’s impairment.
Disability: David’s inability to walk is a disability. His level of disability can be improved with physical therapy and special equipment. For example, if he learns to use a walker, with braces, his level of disability will improve considerably.
Handicap: David’s cerebral palsy is handicapping to the extent that it prevents him from fulfilling a normal role at home, in preschool, and in the community. His level of handicap has been only very mild in the early years as he has been well-supported to be able to play with other children, interact normally with family members and participate fully in family and community activities. As he gets older, his handicap will increase where certain sports and physical activities are considered “normal” activities for children of the same age.
He has little handicap in his preschool classroom, though he needs some assistance to move about the classroom and from one activity to another outside the classroom. Appropriate services and equipment can reduce the extent to which cerebral palsy prevents David from fulfilling a normal role in the home, school and community as he grows.
2. LD example: Cindy is an 8-year-old who has extreme difficulty with reading (severe dyslexia). She has good vision and hearing and scores well on tests of intelligence. She went to an excellent preschool and several different special reading programs have been tried since early in kindergarten.
Impairment: While no brain injury or malformation has been identified, some impairment is presumed to exist in how Cindy’s brain puts together visual and auditory information. The impairment may be inability to associate sounds with symbols, for example.
Disability: In Cindy’s case, the inability to read is a disability. The disability can probably be improved by trying different teaching methods and using those that seem most effective with Cindy. If the impairment can be explained, it may be possible to dramatically improve the disability by using a method of teaching that does not require skills that are impaired (That is, if the difficulty involves learning sounds for letters, a sight-reading approach can improve her level of disability).
Handicap: Cindy already experiences a handicap as compared with other children in her class at school, and she may fail third grade. Her condition will become more handicapping as she gets older if an effective approach is not found to improve her reading or to teach her to compensate for her reading difficulties. Even if the level of disability stays severe (that is, she never learns to read well), this will be less handicapping if she learns to tape lectures and “read” books on audiotapes. Using such approaches, even in elementary school, can prevent her reading disability from interfering with her progress in other academic areas (increasing her handicap).
Gale Encyclopedia of Education:
History of Special Education
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Special education, as its name suggests, is a specialized branch of education. Claiming lineage to such persons as Jean-Marc-Gaspard Itard (1775 – 1838), the physician who “tamed” the “wild boy of Aveyron,” and Anne Sullivan Macy (1866 – 1936), the teacher who “worked miracles” with Helen Keller, special educators teach those students who have physical, cognitive, language, learning, sensory, and/or emotional abilities that deviate from those of the general population. Special educators provide instruction specifically tailored to meet individualized needs, making education available to students who otherwise would have limited access to education. In 2001, special education in the United States was serving over five million students. Although federally mandated special education is relatively new in the United States, students with disabilities have been present in every era and in every society.
Historical records have consistently documented the most severe disabilities – those that transcend task and setting. Itard’s description of the wild boy of Aveyron documents a variety of behaviors consistent with both mental retardation and behavioral disorders. Nineteenth-century reports of deviant behavior describe conditions that could easily be interpreted as severe mental retardation, autism, or schizophrenia. Milder forms of disability became apparent only after the advent of universal public education. When literacy became a goal for all children, teachers began observing disabilities specific to task and setting – that is, less severe disabilities.
After decades of research and legislation, special education now provides services to students with varying degrees and forms of disabilities, including mental retardation, emotional disturbance, learning disabilities, speech-language (communication) disabilities, impaired hearing and deafness, low vision and blindness, autism, traumatic brain injury, other health impairments, and severe and multiple disabilities.
Development of the Field of Special Education
At its inception in the early nineteenth century, leaders of social change set out to cure many ills of society. Physicians and clergy, including Itard, Edouard O. Seguin (1812 – 1880), Samuel Gridley Howe (1801 – 1876), and Thomas Hopkins Gallaudet (1787 – 1851), wanted to ameliorate the neglectful, often abusive treatment of individuals with disabilities. A rich literature describes the treatment provided to individuals with disabilities in the 1800s: They were often confined in jails and almshouses without decent food, clothing, personal hygiene, and exercise. During much of the nineteenth century, and early in the twentieth, professionals believed individuals with disabilities were best treated in residential facilities in rural environments. Advocates of these institutions argued that environmental conditions such as urban poverty and vices induced behavioral problems. Reformers such as Dorothea Dix (1802 – 1887) prevailed upon state governments to provide funds for bigger and more specialized institutions. These facilities focused more on a particular disability, such as mental retardation, then known as “feeble-mindedness” or “idiocy”; mental illness, then labeled “insanity” or “madness”; sensory impairment such as deafness or blindness; and behavioral disorders such as criminality and juvenile delinquency.
Children who were judged to be delinquent or aggressive, but not insane, were sent to houses ofrefuge or reform schools, whereas children and adults judged to be “mad” were admitted to psychiatric hospitals. Dix and her followers believed that institutionalization of individuals with disabilities would end their abuse (confinement without treatment in jails and poorhouses) and provide effective treatment. Moral treatment was the dominant approach of the early nineteenth century in psychiatric hospitals, the aim being cure. Moral treatment employed methods analogous to today’s occupational therapy, systematic instruction, and positive reinforcement. Evidence suggests this approach was humane and effective in some cases, but the treatment was generally abandoned by the late nineteenth century, due largely to the failure of moral therapists to train others in their techniques and the rise of the belief that mental illness was always a result of brain disease. By the end of the nineteenth century, pessimism about cure and emphasis on physiological causes led to a change in orientation that would later bring about the “warehouse-like” institutions that have become a symbol for abuse and neglect of society’s most vulnerable citizens.
The practice of moral treatment was replaced by the belief that most disabilities were incurable. This led to keeping individuals with disabilities ininstitutions both for their own protection and for the betterment of society. Although the transformation took many years, by the end of the nineteenth century the size of institutions had increased so dramatically that the goal of rehabilitation was no longer possible. Institutions became instruments for permanent segregation. Many special education professionals became critics of institutions. Howe, one of the first to argue for in stitutions for people with disabilities, began advocating placing out residents into families. Unfortunately this practice became a logistical and pragmatic problem before it could become a viable alternative to institutionalization. At the close of the nineteenth century, state governments established juvenile courts and social welfare programs, including foster homes, for children and adolescents. The child study movement became prominent in the early twentieth century.
Using the approach pioneered by G. Stanley Hall (1844 – 1924; considered the founder of child psychology), researchers attempted to study child development scientifically in relation to education and in so doing established a place for psychology within public schools. In 1931, the Bradley Home, the first psychiatric hospital for children in the United States, was established in East Providence, Rhode Island. The treatment offered in this hospital, as well as most of the other hospitals of the early twentieth century, was psychodynamic. Psychodynamic ideas fanned interest in the diagnosis and classification of disabili ties. In 1951 the first institution for research on exceptional children opened at the University of Illinois and began what was to become the newest focus of the field of special education: the slow learner and, eventually, what we know today as learning disability.
The Development of Special Education in Institutions and Schools Although Itard failed to normalize Victor, the wild boy of Averyon, he did produce dramatic changes in Victor’s behavior through education. Modern special education practices can be traced to Itard, and his work marks the beginning of widespread attempts to instruct students with disabilities. In 1817 the first special education school in the United States, the American Asylum for the Education and Instruction of the Deaf and Dumb (now called the American School for the Deaf), was established in Hartford, Connecticut, by Gallaudet. By the middle of the nineteenth century, special educational programs were being provided in many asylums. Education was a prominent part of moral therapy. By the close of the nineteenth century, special classes within regular public schools had been launched in major cities. These special classes were initially established for immigrant students who were not proficient in English and students who had mild mental retardation or behavioral disorders.
Descriptions of these children included terms such as steamer children, backward, truant, and incorrigible. Procedures for identifying “defectives” were included in the World’s Fair of 1904. By the 1920s special classes for students judged unsuitable for regular classes had become common in major cities. In 1840 Rhode Island passed a law mandating compulsory education for children, but not all states had compulsory education until 1918. With compulsory schooling and the swelling tide of anti-institution sentiment in the twentieth century, many children with disabilities were moved out of institutional settings and into public schools. However, by the mid-twentieth century children with disabilities were still often excluded from public schools and kept at home if not institutionalized. In order to respond to the new population of students with special needs entering schools, school officials created still more special classes in public schools. The number of special classes and complementary support services (assistance given to teachers in managing behavior and learning problems) increased dramatically after World War II.
During the early 1900s there was also an increased attention to mental health and a consequent interest in establishing child guidance clinics. By 1930 child guidance clinics and counseling services were relatively common features of major cities, and by 1950 special education had become an identifiable part of urban public education in nearly every school district. By 1960 special educators were instructing their students in a continuum of settings that included hospital schools for those with the most severe disabilities, specialized day schools for students with severe disabilities who were able to live at home, and special classes in regular public schools for students whose disabilities could be managed in small groups. During this period special educators also began to take on the role of consultant, assisting other teachers in instructing students with disabilities.
Thus, by 1970 the field of special education was offering a variety of educational placements to students with varying disabilities and needs; however, public schools were not yet required to educate all students regardless of their disabilities. During the middle decades of the twentieth century, instruction of children with disabilities often was based on process training – which involves attempts to improve children’s academic performance by teaching them cognitive or motor processes, such as perceptualmotor skills, visual memory, auditory memory, or auditory-vocal processing. These are ancient ideas that found twentieth-century proponents.
Process training enthusiasts taught children various perceptual skills (e.g., identifying different sounds or objects by touch) or perceptual motor skills (e.g., balancing) with the notion that fluency in these skills would generalize to reading, writing, arithmetic, and other basic academic tasks. After many years of research, however, such training was shown not to be effective in improving academic skills. Many of these same ideas were recycled in the late twentieth century as learning styles, multiple intelligences, and other notions that the underlying process of learning varies with gender, ethnicity, or other physiological differences. None of these theories has found much support in reliable research, although direct instruction, mnemonic (memory) devices, and a few other instructional strategies have been supported reliably by research.
The History of Legislation in Special Education
Although many contend that special education was born with the passage of the Education for All Handicapped Children Act (EAHCA) in 1975, it is clear that special educators were beginning to respond to the needs of children with disabilities in public schools nearly a century earlier. It is also clear that EAHCA did not spring from a vacuum. This landmark law naturally evolved from events in both special education and the larger society and came about in large part due to the work of grass roots organizations composed of both parents and professionals. These groups dated back to the 1870s, when the American Association of Instructors of the Blind and the American Association on Mental Deficiency (the latter is now the American Association on Mental Retardation) were formed. In 1922 the Council for Exceptional Children, now the major professional organization of special educators, was organized. In the 1930s and 1940s parent groups began to band together on a national level.
These groups worked to make changes in their own communities and, consequently, set the stage for changes on a national level. Two of the most influential parent advocacy groups were the National Association for Retarded Citizens (now ARC/USA), organized in 1950, and the Association for Children with Learning Disabilities, organized in 1963. Throughout the first half of the twentieth century, advocacy groups were securing local ordinances that would protect and serve individuals with disabilities in their communities. For example, in 1930, in Peoria, Illinois, the first white cane ordinance gave individuals with blindness the right-of-way when crossing the street.
By mid-century all states had legislation providing for education of students with disabilities. However, legislation was still noncompulsory. In the late 1950s federal money was allocated for educating children with disabilities and for the training of special educators. Thus the federal government became formally involved in research and in training special education professionals, but limited its involvement to these functions until the 1970s. In 1971, this support was reinforced and extended to the state level when the Pennsylvania Association for Retarded Children (PARC) filed a class action suit against their Commonwealth.
This suit, resolved by consent agreement, specified that all children age six through twenty-one were to be provided free public education in the least restrictive alternative (LRA, which would later become the least restrictive environment [LRE] clause in EAHCA). In 1973 the Rehabilitation Act prohibited discriminatory practices in programs receiving federal financial assistance but imposed no affirmative obligations with respect to special education. In 1975 the legal action begun under the Kennedy and Johnson administrations resulted in EAHCA, which was signed into law by President Gerald Ford. EAHCA reached full implementation in 1977 and required school districts to provide free and appropriate education to all of their students with disabilities. In return for federal funding, each state was to ensure that students with disabilities received non-discriminatory testing, evaluation, and placement; the right to due process; education in the least restrictive environment; and a free and appropriate education.
The centerpiece of this public law (known since 1990 as the Individuals with Disabilities Education Act, or IDEA) was, and is, a free appropriate public education (FAPE). To ensure FAPE, the law mandated that each student receiving special education receive an Individualized Education Program (IEP). Under EAHCA, students with identified disabilities were to receive FAPE and an IEP that included relevant instructional goals and objectives, specifications as to length of school year, determination of the most appropriate educational placement, and descriptions of criteria to be used in evaluation and measurement. The IEP was designed to ensure that all students with disabilities received educational programs specific to their “unique” needs.
Thus, the education of students with disabilities became federally controlled. In the 1982 case of Board of Education of the Hendrick Hudson Central School District v. Rowley, the U.S. Supreme Court clarified the level of services to be afforded students with special needs and ruled that special education services need only provide some “educational benefit” to students – public schools were not required to maximize the educational progress of students with disabilities. In so doing the Supreme Court further defined what was meant by a free and appropriate education. In 1990 EAHCA was amended to include a change to person-first language, replacing the term handicapped student with student with disabilities. The 1990 amendments also added new classification categories for students with autism and traumatic brain injury and transition plans within IEPs for students age fourteen or older.
In 1997, IDEA was reauthorized under President Clinton and amended to require the inclusion of students with disabilities in statewide and districtwide assessments, measurable IEP goals and objectives, and functional behavioral assessment and behavior intervention plans for students with emotional or behavioral needs. Because IDEA is amended and reauthorized every few years, it is impossible to predict the future of this law. It is possible that it will be repealed or altered dramatically by a future Congress. The special education story, both past and future, can be written in many different ways.