Sample Health Care Essay Assignment on Down Syndrome

What Is Meant by Intellectual and Developillental Disabilities IVAN BROWN WHAT YOU WILL LEARN ABOUT IN THIS CHAPTER • Literal, definitional, and social meanings of terms • Terms used in other countries • The need for disability terms • Current usage of the terms intellectual disabilities and developmental disabilities In this text, the terms intellectual disabilities and developmental disabilities are used to describe the characteristics of two somewhat different but overlapping groups of people. These people have existed throughout the world across human history, and they make up part of all cultures. They are part of the wide variety of people that exists in the human population at any one time. Although it is sometimes useful for us to describe them as groups for various positive purposes, they are not distinct groups of people at all; rather, they are individuals who each add one piece to the mosaic that illustrates the rich, interesting diversity that is characteristic of the human condition. It has only been since the early 1900s that people with disabilities have been described and classified in any comprehensive way (see Chapters 2 and 4 for the historical and current contexts). This has been done primarily to identify those who need special learning and lifestyle support and to capture the ever-expanding knowledge of disability, but it has been done for a wide variety of other reasons as well. Numerous terms, now outdated, emerged over this period to help describe and classify people with disabilities. The use of specific terms-and sometimes the use of all terms-has been The author is grateful to the following individuals for providing information on the use of terms in their countries: Mojdeh Bayat, Marco Bertelli, Chan Kum Leong, David Felce, Sonya Henderson, Geert Van Hove, Yves Lachapelle, Hasheem Mannan, Leena Matikka, Shimshon Neikrug, Trevor Pannenter, Dana Roth, Alice Schippers, Michael Shevlin, Balbir Singh, Ryo Takashiro, Miguel Verdugo, Patricia Noonan Walsh, and Mian Wang. controversial at different periods of history, and misuse has no doubt occurred (Foreman, 2005). Still, it is important to know why such terms continue to be widely used and to understand the meaning that is ascribed to them. LITERAL, DEFINITIONAL, AND SOCIAL MEANINGS OF TERMS The term intellectual disability is widely used internationally. Other terms are also commonly used within some countries to mean almost the same thing: mental retardation (especially in the United States), developmental disability (especially in Canada), “learning disability (especially in the United Kingdom) , and mental handicap and devewpmental handicap (less common today, but still used in some countries). Developmental disability is sometimes used synonymously with intelkctual disability and other terms, but at other times it is used to describe a slightly different group of people with somewhat different characteristics (especially in the United States, where developmental disability has its own definition). The use of different terms, sometimes even within a country, to describe similar conditions may seem confusing. Yet, such difference in usage is important to recognize and understand. It represents the unique, and sometimes subtle, regional or national meanings of a similar condition (intellectual disability or developmental disability). These unique meanings derive from a blend of each term’s literal meaning, definitional meaning (if available), and social meaning. The literal meaning of a term refers to its semantics, or one’s understanding of the words that make up a term. The literal meaning represents the simplest and broadest understanding of a term, because it goes no farther than an understanding of what the term’s words mean. This literal meaning is the basic foundation for how a term is conceptualized, and, for this reason, it is a good place to begin to understand it. Thus, intellectual disability refers to some restriction or lack of ability having to do with the human intellect, and de3 4 BROWN velopmental disability refers to some restriction or lack of ability having to do with human development. There is often a need, however, to define the literal meaning of a term more specifically (and often more narrowly) for specific purposes, such as providing educational, medical, or social services. Thus, many professional organizations, government bodies, and other groups have built on the foundation provided by the literal meaning of a term to set out its formal definitional meaning. The definitional meaning shapes the more general, literal meaning to how a group envisions the term being interpreted and used for its purposes. Some specific examples of definitions of intellectual disability, developmental disability, and related terms (e.g., mental retardation, mental handicap) are provided in the following sections. In addition, literal and definitional meanings of terms that are in use to describe groups of people are thought of, spoken about, and used differently by different groups of people. This is because the meanings of terms are subject, over time and place, to a wide variety of changing social values and attitudes, and by cultural, political, and economic trends. Such differences in attitude and use reflect the sometimes fluid social meaning of a term, or the particular and sometimes unique way the term is understood and used by people within their own social contexts. For example, the term mental retardation continues to be in wide use in the United States and some countries, but, due to regional social meaning, it is a derogatory term in the United Kingdom, Australia, Canada, and other countries-to different degrees and for a variety of reasons. An understanding of the meaning of intellectual disabilities, developmental disabilities, and related terms requires an understanding of their literal, definitional, and social meanings. Moreover, it requires an understanding that these three meanings blend together in many different ways in countries around the world, and, indeed, in many different ways within individual countries. Literal Meanings As noted, understanding the literal meaning of a twoword term (e.g., intellectual disability, developmental disability) involves putting together the literal meanings of its two words. Literal meanings vary somewhat from one source to another, as shown in Table 1.1, which shows the slightly different literal meanings for the words intellectual and disability from two sources. According to Webster’s College Dictionary (2001), ability means the “power or capacity to do or act physically, mentally, legally, morally, or financially,” and dis-, as a prefix, has a “privative, negative, or reversing force relative to [a word].” The prefix dis- is used with ability in this way to mean not able; except that there is an imTable 1.1. Sample literal meanings of intellectual disability Intellectual “Relating to your ability to think and understand things, especially complicated ideas” Cambridge Advanced Learner’s Dictionary http://dictiona ry.cam bridge .org/defi ne .asp ?key=41289&d ict =CALD “Of or associated with or requiring the use of the mind”; “Involving intelligence rather than emotions or instinct” Webster’s Online Dictionary http://www.websters-online-dictionary.org/definition/ intellectual Disability “An illness, injury or condition that makes it difficult for someone to do the things that other people do” Cambridge Advanced Learner’s Dictionary http:/ /dictionary.cam bridge. o rg/def i ne. asp ?key=22009 &d ict =CALD “The condition of being unable to perform as a consequence of physical or mental unfitness” Webster’s Online Dictionary http://www.websters-online-dictionary.org/definition/disability plication that one is not able due to a specific reason or cause. Thus, disability means more than simply not able; it means not able because of something that deprives a person of performing or accomplishing something. The adjective intellectual, according to the Oxford Advanced Learner’s Dictionary of Current English, Sixth Edition (2000), means “connected with or using a person’s ability to think in a logical way or understand things.” When the word intellectual is used as an adjective to qualify the noun disability, the separate meanings of the two words become enmeshed to form just one meaning. Thus, at the semantic (word meaning) level, intellectual disability refers to a person’s ability to think in a logical way or understand things as the thing that dep1ives him or her of performing or accomplishing specific things. Similarly, the word developmental, as an adjective on its own, refers to “a state of developing or being developed” over time (Oxford Advanced Learner’s Dictionmy, 2000). When developmental is put together with disability and the two words are used as one term, developmental disability refers to something in the way a person develops over time that deprives him or her of being able to perform or accomplish specific things. Obviously, there is overlap between these two terms-overlap that is apparent throughout this text. Lower intellectual functioning may be the “something” that affects the way an individual develops over time that deprives him or her of performing or accomplishing specific things. Conversely, delayed development may impede intellectual and related functioning. As a consequence, the two terms are sometimes used interchangeably in a number of countries. Especially in the I r t United States, however, the two terms (with mental retardation often utilized in place of intellectual disability) are sometimes used together and shortened to MR/DD to describe a broader group of people. The literal meaning of a term that a person uses is the basic way that person, and others, understand it. An interesting question is whether the literal meaning of the terms intellectual disability and developmental disability, as they are used in 2007, adequately describe the area or field of inquiry that this book addresses. A related question is whether the meaning of the terms used adequately encompasses and reflects the values a person wants to promote about his or her area or field of inquiry. Definitional Meanings Definitional meanings of terms specify what the terms mean for particular groups, organizations, or purposes. There are many definitions of intellectual disability in use throughout the world. (Table ·1.2 provides DESCRIPTION OF TERMS 5 some sample definitions of terms from a variety of countries to illustrate.) These terms differ somewhat, because of their origin and purpose, but a great many of these are in keeping with the principal elements of the definitions of one or more of the following organizations: the American Association on Mental Retardation, the American Psychiatric Association, and the World Health Organization. American Association on Mental Retardation 1 The American Association on Mental Retardation (AAMR) ‘s definition of mental retardation has probably had the most international impact. In its 2002 definition, AAMR described mental retardation as “a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18” (2002, p. 8). (See Display 1.1 for more details.) AAMR’s defi1InJanuary 2007, AAMR became the American Association on Intellectual and Developmental Disabilities (AAIDD). Table 1.2. Sample additional definitions of intellectual disability and related terms Source Law Reform Commission, 1995 New South Wales, Australia http://www.lawlink.nsw.gov.au/lrc.nsf/pages/R80CHP3 Canadian Association for Community Living http ://www.cad.ca/eng I ish/a boutus/def in it ions. htm I Bedford County Public Schools: Special Education http:www.bedford.k12.va.us/specialed/page4.html British Institute of Learning Disabilities http://www.bild.org.uk/factsheets/what_is_learning_ disability.htm Costa Rica biblioteca virtual en Salud http://www.binasss.sa.cr/poblacion/pobla 1.htm Disabled Persons’ (Employment and Rehabilitation) Ordinance, 1981 (Pakistan) http://www.logos-net.net/ilo/159_base/pakistan/pak_rap/ leg.htm Quoted material offering definition “Intellectual disability” means a significantly below average intellectual functioning, existing concurrently with two or more deficits in adaptive behaviour. An intellectual disability is an impaired ability to learn. It sometimes causes difficulty in coping with the demands of daily life. It is a condition which is usually present from birth, and it is not the same as mental or psychiatric illness. Developmental delay means a disability affecting a student ages two through eight: 1. Who is experiencing developmental delays, as measured by appropriate diagnostic instruments and procedures, in one or more of the following areas: physical development, cognitive development, communication development, social or emotional development, or adaptive development; and 2. Who, by reason, thereof, needs special education and related services. The term [learning disabilities] was widely adopted in England … in 1996. The World Health Organisation defines learning disabilities as • ‘a state of arrested or incomplete development of mind’ and somebody with a learning disability is said also to have • ‘significant impairment of intellectual functioning’ and • ‘significant impairment of adaptive/social functioning’. El retardo mental consiste en un funcionamiento intelectual por debajo del promedio, que se presenta junto con deficiencias de adaptaci6n y se manifiesta durante el perlodo de desarrollo. [Mental retardation consists of below average intellectual functioning, that appears along with adaptive deficits and manifests during the developmental years.] “[D]isabled person” means a person who, on account of injury, disease or congenital deformity, is handicapped for undertaking any gainful profession or employment in order to earn his livelihood, and includes a person who is blind, deaf, physically handicapped or mentally retarded. 6 BROWN Display 1.1 Definition of mental retardation by the American Association on Mental Retardation Definition Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18. The following five assumptions are essential to the application of this definition: 1. Limitations in present functioning must be considered within the context of community envii” ronments typical of the individual’s age peers and culture. 2. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. 3. Within an individual, limitations often coexist with strengths. 4. An important purpose of describing limitations is to develop a profile of needed supports. 5. With appropriate personalized supports over a sustained period, the life functioning of the person with mental retardation generally will improve. Theoretical model The theoretical model [of mental retardation] … denote [s] the relationship among individual functioning, supports, and five dimensions that encompass a multinition has evolved over the 20th century, and it reflects current thinking on the contributions of intelligence, the environment, support, and other interactions between a person and the context in which the person lives (see especially Schalock, 2002). American Psychiatric Association The American Psychiatric Association (APA) ‘s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR, 2000) is more similar to AAMR’s previous (Luckasson et al., 1992) definition. The DSMIV-TR describes three characteristics of individuals with mental retardation (APA, 2000, p. 41): I) sub-average intellectual functioning, IQ of 70 or below measured by an individually administered intelligence test; 2) concurrent limitations or alterations in adaptive functioning, lowered ability to cope with common life demands and to meet the standards of personal independence expected of them in at least two of the following domains: communication, self-care, domesdimensional approach to mental retardation: … intellectual abilities; adaptive behavior (conceptual, social, practical skills); participation, interactions, and social roles; health (physical health, mental health, etiology); and context (environments, culture). Intellectual Abilities Adaptive Behavior Ill. Participation, Interactions, Social Roles From MENTAL RETARDATION: DEFINITION, CLASSIFICATION, AND SYSTEMS OF SUPPORTS. 10TH EDITION (pp. 9, 10, & 13) by LUCKASSON, RUTH A. Copyright 2002 by AMERICAN ASSOCIATION ON MENTAL RETARDATION (AAMR). Reproduced w ith permission of AMERICAN ASSOCIATION ON MENTAL RETARDATION (AAMR) in the format Textbook via Copyright Clearance Center. tic skills, social skills, self-direction, community, academic skills, work, leisure, and health and safety; and 3) onset before age 18 There are similarities and differences between the AAMR and DSM-IV-TR definitions of mental retardation (see AAMR, 2002, for a comparison of these and other definitions). Both are widely used in the United States and to varying degrees in many other countries. Because a great deal of the scholarly literature in the fields of intellectual disability and developmental disability is produced in the United States, those from other countries sometimes use the term mental retardation in some contexts to clarify the group of people to whom they are referring. As a result, the meanings associated with these terms have had considerable ongoing influence on the meaning of similar terms used in other parts of the world. World Health Organization The World Health Organization (WHO) published a classification system in 2001 entitled International Classification of Function- tellectual and Meanings the and accons1a4~rc1so11 prcs(: llting \\’ith <111 intcllcclll;d dclicw11c\ !. 1.,!iicl1 ts the li1cr;tl 1i;111sL11i()IL hut the DESCRIPTION OF TERMS 9 meaning is closer to intellectual disability. The Italian term retardo mentale is frequently used in the general population, although people who work in the human services field nmv use translations of “intellectual disability” or “cognitive impairment.” In the Flernishspeaking part of Belgium, several terms are used: men tale handicajJ [mental re tardation] , ventandelijke handicap [intellectual handicap], and verstandelijke beperking [intellectual impairment/ disability]. This is one of the language groups that uses the Englishderived word handicap, even in legislative texts. In The Netherlands, the Dutch terms mensen rnet een verstandelijhe beperking [people with an intellectual restriction] or, somewhat less frequently, rnensen met een ve1:standelij’ke handicap [people with an intellectual handicap] are used in formal settings (e.g., governmental, professional). The word handicap is taken from the English word, but its meaning differs-when it is translated into English, the word disability is used. These terms are literally translated from, and based on, the A.AMR and ICD-10/ ICF definitions. The main difference between the language used in formal settings and in services and daily life is that, in formal settings, people are said to have an (intellectual) disability, and, in commonly used language, people are said to be (intellectually) disabled. This illustrates clearly the differe nt social contexts and the gap between policy and practice. In general language, the term geestelijhe handicap [mentally disabled] is also used , but the equivalent of the Flemish mentale handicap is not common in Dutch. An increasing number of countries have recentl y turned to using terms in their languages that are equivalent to intellectual disability, although other terms persist to some degree . The term mostly used in Spain, for exampl e, is discapacidad intelectual [intellectual disability], which organizations, professionals, researchers, self-advocates, and government administrations tend to use as their first choice. Until about 2000, the term most freque ntly used was retraso mental [mental retardation] , and it is still used by some people. Another term that is much less frequently used in Spain is deficiencia mental [mental deficiency], and the legal term in social policy is still minusvalia psiquica [psychological handicap] . In Israel, the term (in English le tte rs) jJigur sichli [mental retardation] is used and generally understood, although nerhut hitpatchutit [deve lopmental disabilities] is \’ery ofte n th e te rm of choice by those who work in the huma n sen’ices field. The term mefager [rctardate or retarded], depending on th e context, is also in 11se in the general population. People-first language , <1s in the term adam im jJigur [a person with mental retardation], has been used \Vith increasing frequency sinc e 1990. Two tcrn1s that arc conside red to be rno1-e politicalh· co rrect and arc incrc1singh being used are 10 BROWN yel,ed miuchad [special child] and adam em tzrachim miuchadim [special needs person]. In Iran (currently known as Islamic Republic of Iran), the terms used to describe disabilities in children differ from those used to describe disabilities in adults. In the general culture, children whose disabilities are not physical are known to be aqab oftadeh [mentally retarded]. In governmental documents, children who have disabilities are referred to as koodakan e estesnaii [exceptional children]. This term encompasses all physical and mental (intellectual) disabilities. The term natavan, which is literally translated as “unable,” is used as an adjective to describe a specific category, such as intellectual, behavioral, or physical disability. For example, natavan e zehni means “the person who is mentally unable.” In the acatlemic literature, the word natavan, which is the equivalent word to disability is used. In Persian literature, this word is usually used for “the poor” or “the elderly.” For the adults with disabilities, the term ma’lool, which is equivalent to the word handicapped, is used to refer to both physical and mental (intellectual) disabilities. Although the Iran Census of 1986 definition of this term does not formally include intellectual disabilities, the term is used in practice as an adjective to describe mental as well as physical disabilities. For example, ma’wolezehniorma’looleravanimeans “mentally handicapped.” The census defined ma’lool as “any case of blindness, deafness and muteness, deafness, loss of arm, leg, or both, deformity of right or left hand/foot &full paralysis is known as disability.” The English term mental retardation is frequently used within the medical and related professional documents in Iran to refer to individuals with intellectual disabilities. Various terms are used throughout Asian countries. In Japan, the term intell,ectual disability was officially adopted in 1998. Singapore, which is a multilingual country, uses the English terms intell,ectual disability or special needs, although mental retardation is still occasionally used for some purposes. The Chinese term zhi zhang [intellectual disability], like its English counterpart, is typically used in people-first style: zhi zhang ren ski [persons with intellectual disability]. In China, mental retardation is the most commonly used term, but it does not mean the same thing as the AAMR definition. Instead, it refers to a variety of disabilities, usually including intellectual (cognitive) disabilities, learning disabilities, speech and language impairment, and autism. Not until about the year 2000 has !,earning disability been independently described in China. Other countries have moved away from using similar terms. In Canada, deveWpmental disability is commonly used as a synonym for intellectual disability, although developmental disability may also be used to describe conditions where there is not necessarily intellectual disability, such as cerebral palsy and Asperger syndrome. A number of countries use terminology in ways that are quite similar to the ways they are used in Canada. For example, Finland’s accepted term is kehitysvammainen, which means “a person who has developmental disabilities.” Henkisesti jiilkeenjiiiinyt, the Finnish term for “mentally retarded,” is no longer used. Finland does not typically use any formal definition for purposes of funding or access to education or social services, but sometimes employs terms or labels for such purposes as qualifying for a service or disability pension. In Finland, such labels are also used to excuse people with developmental disabilities from compulsory military service. In the United Kingdom, the terms !,earning disability and !,earning difficulty have been in use for a number of years. The latter term tends to be used in the education system and sometimes in the health and social care systems. Some self-advocates prefer this latter term. People with disabilities and their advocates in the United Kingdom successfully lobbied to have lower intellectual functioning termed a learning disability rather than a mental handicap. The rationale was that these people are not different as human beings but simply have difficulty learning. On the one hand, the term !,earning disability has the same general meaning as the term mental retardation in the United States, but it appears to reflect more positive values for people with lower intellectual functioning. On the other hand, it can cause considerable confusion internationally because the term !,earning disabilities, as used in North America and elsewhere, refers to difficulties in learning but not lower intellectual functioning. Even in the United Kingdom, there is some confusion, particularly in the education field, where, for example, children with dyslexia may be said to have learning difficulties but not a learning disability. However, assessment of need within the education system is not based on labeling. A pupil may be identified as having special educational needs through possessing higher or lower intellectual functioning or a specific condition causing a difficulty in learning. An individual statement is then made regarding the need and the recommended response to it (this process is called statementing). The term mentalhandicapwas historically used in the United Kingdom, and usage may still be common among the general population. Increasingly, academics are adopting the term intell,ectual disabilities in view of its international currency. In Ireland, the term mental handicap was traditionally used and it persists in some quarters, but the Government’s Review Group endorsed intellectual disability in its 1990 Report Needs and Abilities (P.N. Walsh, personal communication). There is no agreed-upon terminology, however, and a variety of terms are used, often interchangeably, including intell,ectual disability, learning disabilities, mild general learning disabilities, moderate general learning disabilities, severe/profound general !Parning disabilities, and learning difficulties. Service provider agencies tend to use the term learning disabilities. Sweden has led the way in introducing an interesting new concept to terminology. The view in Sweden, similar to that held throughout the Nordic countries, is that the use of terms is related to societal attitudes and that it is important to adopt terms that suggest desired attitudes and reflect those that are commonly held. Thus, it is also considered important to shift toward description of the function and away from a description of the impairment. The Swedes also have a language tradition of finding descriptive expressions (e.g., a ‘cleaner is now called an office caretaker) and a general ideology that embraces the importance of reducing social inequities. For these reasons, Sweden uses the term forstands hinder [understandinginhibition]. It will be very interesting to track the international impact of this idea in future years as the social meanings of intellectual disability and developmental disability evolve. A few countries have developed their own definitions and criteria that are used for service eligibility. For example, the term intellectual disability, not mental retardation, is used in Australia. Its meaning is set out in the Intellectually Disabled Persons’ Services Act 1986, but it is close to the AAMR and APA definitions of mental retardation: intellectual disability in a person older than 5 years of age means a significant subaverage general intellectual functioning that co-occurs with deficits in adaptive behavior and is manifested during the developmental period. As in many other countries, the currently accepted way to address people with intellectual disabilities in Australia is to use people-first language, as in “person with an intellectual disability.” Unlike some parts of the United States and Australia, most other developed countries do not have formal definitions of detJelojnnental disabilities or similar terms, at least not for use as criteria for access to services. This is generally the case, for example, in Belgium, Canada, Finland,Japan, Sweden, and the United Kingdom. Overall, there is considerable overlap among the terms that are used around the world, but current usage in different countries also illustrates the importance of understanding that the precise meaning of the terms is a unique blending of the literal, definitional, and social meanings. Although the people being addressed may be very similar, the actual meanings of the words used to describe them across various languages differ in many, often subtle ways. The social contexts within which these terrns are used varv considerably from region to region, and even the same word in the same language may be accompanied bv valDESCRIPTION OF TERMS 11 ues, attitudes, or connotations that render quite distinct meanings. NEED FOR DISABILITY TERMS Throughout history, people who have lower intellectual or developmental functioning have often been referred to through the use of special terminology. As of 2007, these individuals may be called “people with intellectual disabilities” or “people with developmental disabilities.” An interesting question is whether other people, such as this book’s editors, contributors, and readers, need to use such terms as intellectual disability and developmental disability at all. Dangers of Using Disability Terms Terms that are related to intellectual disability and developmental disability have been misused, both directly and indirectly, in numerous well-documented ways. These include isolating people from their families, friends, and communities; segregating people in schools, residences, and workplaces; denying personal freedoms and human rights; and preventing procreation (Roeher Institute, 1997; Zola, 1993). These misuses have had a significant negative impact on individuals’ lives, and many of them continue in some form today. Misuse of terminology has caused some terms to become obsolete, a situation about which many disability advocacy groups have spoken (e.g., self-advocacy groups in sorne countries objected to individuals being called “retarded” after the term took on derogatory connotations). Some groups of people, such as those who have low hearing or vision, sometimes avoid the term disability altogether and instead describe their lifestyle as a subculture (e.g., Free body & Power, 2001). For reasons such as these, the cautions about misuse of terms that are found throughout the literature on intellectual and developmental disabilities need to be clearly understood and assiduously applied. Another danger more closely related to the meaning of terms is that terms used to describe those on the margins of society have a nasty habit of taking on negative connotations because of stereotyping (Blaska, 1993), even resulting at times in people with disabilities themselves not always wanting to be associated with the terms (K:’1plan, 2005). It is aln10st impossible for indivicJuals in the 21st century to believe those with lower intellectual functioning were once referred to as idiots, morons, feeble-minded, and rnentally deficient by wellmeaning and caring people. Throughout the last half of the 20th century, the term mentallv retarded was quite respectable in most parts of the world, whereas many people now feel thoroughly insulted if they are called mentallv retarded. In manv countries, the term devel- 12 BROWN opmentalhandicap began to be commonly used around 1980 as a more acceptable alternative, but soon the word handicap was seen to have the wrong connotations, and disabilityf!”t}~ck.ly replaced it. What are the chances of intellectual disability or developmental disa/Jiliry remaining respectable terms? Probably ndtgood! In time, . other more “appropriate” terms will replace them because the social meanings of the terms will<::hange. Why is there such a turnover of terms? Using special terms torefer to people whose lower abilities lead others to believe they are on the margins of society leads to a cycle of devaluation and degradation. The terms classify people, either formally or informally, as different. Classifying others as different canies with it perceptions that they are “not worthy” and “outsiders.” Such perceptions lead others to treat those classified as different as if they really are different. Finally, treating people differently leads them to act differently. The irony is that because they act differently, those who classified them in the first place feel assured that their classification has ·been< correct all along and it was therefore justified. Thus, the cycle may continue.This situation suggests that terms such as intellectualdisabil~ iry and developmimtaldisa/Jilityare harmful and perhaps best abandoned wherever possible. Reasons for Using Disapility Te.rms The terms inteUectual disabiliry, developmental disability, and related terms are .useful for several purposes.• Six of themost important are highlighted in this section. l. The principal argument that is used to support the use of terms such as intellectual disability and developmental disabilityis that they help to identify, and thus to assist, ·people who . have special needs. Within ·the present context, it is often useful to classify people as having such disabilities so that they may receive the help they need to carry out the activities of daily living. This help may occur at any age and in many places, such as in family homes, in health services, in schools, in vocational and life.cskills development programs, or in the homes of adults with disabilities. Those who fund special assistance programs and those who . pro.:. vide them often want to be assured that their efforts are going to the intended recipients. Thus, classifying people cas having ‘ intellectual disabilities or developmental disabilities can often lead to much … needed supports from those who fund programs. In practice, either formal or informal definitions may be used for such purposes, although there is often considerably more flexibility .ft:> respond to the .needs of individuals when infornt.a.kd:efinitions influenced by the social meaning of intellectual disability or developmental disability are used. 2. Peoplewhoare somewhatmarginalized in society, such as those with intellectual and developmental disabilities, often need specific legal protection to express themselves·1 personally and to participate fully in their communities. Terms that are identified with such groups can be used in legislation and legal documents to set out such protections. At the same time, including terms in legal documents demonstrates a commitment by the broader society to include identified marginalized groups. The material presented in Chapters 5 and 6 outlines rights and entitlements and illustrates the importance of such terms as physical or mental handicap for providing protection for people with disabilities. Many countries use terros similar to intellectual disability and developmental disability to such positive advantage. For example, Norway is often seen as having supportive laws regarding patient rights and child rights, and Canada and the United States are highly regarded by many countries for their legal recognition of minorities and other groups that may be marginalized. 3. Professionals who work in the intellectual and developmental disabilities fields, parents, and others sometimes need to use these terms to clarify to others what might be expected of a person with a disability. At times, people find it helpful to use other terms that have similar meanings to help others understand the nature of a disability. For example, a professional who is explaining, for the first time, the nature of delayed development in a young child to parents who have had no experience with disabilities might say something like, ”Your child appears to have a developmental delay. Some people call this a developmental handicap, or developmentally challenged, or mental retardation, or mental handicap, but these all basically mean the same thing–that your child will be able to do many of the things that other children her age can typically do, but it will take her more time and effort to learn to do them. Some of those things she may not learn to do at all. However, she will learn other things that are important to her.” 4. The terms intellectual disability and developmental disability, and their numerous subterms, are useful to classify various categories of disabilities. By allowing for precision, such classification helps to broaden knowledge of specific disabilities through research and practice and to understand better what services and treatments are required for people to live in the best possible ways; 5. Individual self-advocates and groups of selfadvocates, such as People First and numerous others (see Chapter 6)., take advantage of terms such as intellectual disabilityand developmental disability to make their cause known to others in ways that can be clearly understood. Parent and family groups, some of which play a strong ·advocacy role in various jurisdictions, often find it very helpful to draw attention to what it means to have a child or family member with an intellectual or developmental disability and to show that this experience is different from that of having a child or family member without a disability. 6. Leaders in the fields of intellectual and developmental disabilities-such as academics, researchers, policy makers, and heads of organizations-need a term that describes their area of interest and that focuses attention on a specific set of issues. Having a field that is identified by the name of the disability adds a legitimacy to this area of interest and its set of issues and ~ets it apart as something that is worthwhile. In the same line of thinking, national and international organizations find it helpful to use these terms to describe their focus of interest. Some examples include the International Associ_ation for the Scientific Study of Intellectual Disabilities, the American Association on Mental Retardation, and the Australasian Society for the Study of Intellectual Disability. CURRENT USAGE OF THE TERMS INTELLECTUAL DISABILITIES AND DEVELOPMENTAL DISABILITIES For children, the term de·oelojnnental delay is commonly used instead of intellectual disability or developmental disability. The reasoning is that all aspects of development are still in progress. It is possible that the delay is caused by a condition that will not persist over time and that there will not be an ongoing disability. As of 2007, it is quite acceptable to talk about intellectual disabilities (or similar terms) as a group of disabilities, about the field of intellectual disabilities, or about people with intellectual disabilities as a whole population. (For a summary of acceptable terms, see Table 1.3.) When referring to a specific individual, however, the practice is to simply use the person’s name. The reason for this was set out clearly by the Canadian Association for Community Living (2004), which noted that Intellectual disability, or mental handicap, was at one time called mental retardation. \Ve have been informed by people who have an intellectual disability that they resent being labeled bv this term. For this reason, we always refer to people for who they are, rather than by what thev are (i.e., the “disabled”). Sometimes, for purposes of clarification, a term such as intellectual disability is added in people-first format, as in the following example: “Sarah, a woman with an intellectual disability.” Alternatively, professionals who work in services for people with intellectual or developmental disabilities very often use the verb sujJport when clarification is needed. Thus, they would say, “Sarah, a woman we support.” This is thought to be more respectful of the person and to promote current DESCRIPTION OF TERMS 13 Table 1.3. Acceptable use of intellectual disabilities, developmental disabilities, and related terms as of 2007 Term Generally (applicable group) acceptable use Example Intellectual disabil- A group of “The disabilities ities (adults or disabilities related to intelchildren) lectual and other abilities” A field of study or “Research in intelservice lectual disabilities” Adjective for a “People with ingroup of people tellectual disabilities” Intellectual disabil- The term in