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Readings for Housing for People With Special Needs:Table of ContentsA DISABLED MANIFESTO F DISABILITY STATISTICS F
Revealing, Humorous and Poignant Moments From Terry Gross' Interviews on Fresh Air FWHAT IS UNIVERSAL DESIGN? F 'Distorted Representations': an Excerpt From a New Book on Disability FA Brief Introduction to Disabilities F
We proclaim that we are born free and equal human beings; that our disabilities are limitations only, and that our identity does not derive from being disabled. We proclaim that we have the same value as people who are not disabled, and we reject any scheme of labeling or classifying us that encourages people to think of us as having diminished value. We reject the idea that institutions must be created to "care" for us, and proclaim that these institutions have been used to "manage" us in ways that non-disabled people are not expected to accept. We particularly denounce institutions whose purpose is to punish us for being disabled, or to confine us for the convenience of others. We reject the notion that we need "experts," to tell us how to live, especially experts from the able-bodied world. We are not diagnoses in need of a cure or cases to be closed. We are human, with human dreams and ambitions. We deny that images of disability are appropriate metaphors for incompetence, stupidity, ugliness or weakness. We are aware that as people with disabilities, we have been considered objects of charity and we have been considered commodities. We are neither. We reject charitable enterprises that exploit our lifestyle to titillate others, and which propose to establish the rules by which we must live without our participation. We also reject businesses that use us as "warm bodies" to provide a passive market for their services, again laying down rules by which we must live for their profit. We recognize that the lines between charities and businesses are blurred in the disability industry, and we do not accept services from either if their essential function is to exploit us. We assert our rights of self-determination in the face of rules, eligibility criteria, regulations, customs, laws or other barriers, and we pledge not to allow any authority or institution to deprive us of our freedom of choice. Finally, we assert that any service we need, from specialized teaching to personal care, can be provided to us in the community among our non-disabled peers. Segregated institutions are not necessary to serve us, and they have been the greatest source of our oppression, especially when they have been run by able-bodied people without our participation. All human beings are more alike than we are different. We recognize that when we assert this belief we will find ourselves in conflict with regressive institutions and their supporters, some of whom may be disabled themselves. We do not expect thousands of years of stereotyping to dissipate quickly. We commit ourselves and those who come after us to challenge our oppression on every level until we are allowed to be fully human and assert our individuality ahead of our disability. By John R. Woodward, M.S.W. Center for Independent Living of North Florida, Inc.
Vol. XIV, No. 8 (1993) ISSN: 0732-2623 NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES DEPARTMENT OF EDUCATION WASHINGTON, D.C. 20202 Vol. XIV, No. 8 (1993) ISSN: 0732-2623 NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES DEPARTMENT OF EDUCATION WASHINGTON, D.C. 20202 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * "It is clear to most of us within the disability research community that there is a serious need for more and better data about people with disabilities in the United States. We need better information about the nature of disabling conditions and their social and economic consequences, both to guide policy and programmatic decisions as well as to enrich our understanding of disability. We need to know more about demographic trends, the impact of impairments on employment and the range of life functions, the ways in which people with disabilities participate (or not) in public and private programs, and the values and attitudes of disabled and nondisabled people about disability." Richard L. Scotch, "The Politics of Disability Statistics." In Zola (Ed.), Disability Studies Quarterly, Summer 1990, Vol. 10, No. 3.
How many people with disability are there in the United States? This question is often asked by legislative offices, policy analysts, researchers, and newspaper reporters, as they address public policy issues. Information specialists in government or in disability statistics research and analysis organizations have difficulty responding in a straightforward way, because there is no simple, single answer to this question. In many other policy areas, the measures that indicate that an individual is a member of a particular population or group can be more clearly understood: our age qualifies us for public school benefits, for retirement programs. Gender or race may make us eligible for various programs and funds. The same is true for individual or household income levels. But individuals who have worked in the area of disability are well aware that the definition of the term, and therefore the statistics on the size of the population of individuals with disability, depend on various program statistics serving selected eligible people, on information collected in surveys addressing broad social purposes, or on interpretations of data designed to achieve particular programmatic purposes. As the sidebar shows, there are many different answers, and the magnitude varies. What is important is the appropriate measure, given the specific use for the data. Advocates may adopt larger, general numbers, like the 43 million number used in the Americans With Disabilities Act (ADA), to emphasize the extent of the disability policy issue. Someone doing a marketing study before investing in a business development plan aimed at a specific limitation or condition will need much more specific information on the population with particular limitations or needs. Disability statistics has been a specialty for a few researchers and public policy analysts; with the Americans With Disabilities Act and other disability rights legislation, the use of these statistics and numbers is becoming more common. But sometimes the statistics are misused and can be misleading. This _Rehab BRIEF_ summarizes information sources for current disability statistics and describes efforts to develop better answers to policy questions. Disability is an important issue in public policy, requiring that we make better use of the existing information on prevalence of disability and that we address gaps in our knowledge. AN ISSUE OF DEFINITIONS The definition of disability is a crucial issue. Disability has been used to mean everything from a minor impairment that has no or little impact on activity to a condition that requires one to rely on others for assistance in life's most basic functions. There is no OK accepted definition of disability. Asking a question such as Are you disabled? could elicit many responses, depending on the particular individual's definition of disability. To some, it may mean using a wheelchair. To others, the inability to do a specific task or activity. Or, it may imply a health condition. National surveys and programs serving people with disability use specific stated definitions or terms, but each program or survey uses definitions addressing its specific purposes. The concept measured by a given survey or administrative data system may be limitation of activity, limitation in function, need personal assistance, chronic condition, or others. Choice of the way to define disability is more than a semantic issue. The definition determines who is included in the concept and who is not. If entitlements, such as Social Security Disability Insurance (SSDI), are tied to definition of disability, there are cost-containment issues in determining the limits of the population. On the other hand, larger numbers may be more effective in advocacy efforts. The definition thus directly impacts the statistical estimates of people with disability. The range of estimates varies depending on the source of the data and the concept measured. G Return to TopSeveral national surveys, conducted by federal agencies, provide much of what we know about population statistics on disability. There are many other specialized studies that can offer additional detail on program use or on special aspects of services; but three surveys, the National Health Interview Survey, the Survey of Income and Program Participation, and the Current Population Survey, provide a good basis for understanding disability statistics.
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The National Health Interview Survey (NHIS) is a nationwide sample of households conducted by the National Center for Health Statistics (NCHS). It queries the civilian, noninstitutionalized population of the United States on its health. For disability purposes, it is concerned with activity limitations and chronic conditions. A multistage probability design permits a continuous sampling of the population. Each weekly sample is representative of the target population and is additive with other weekly sam- ples. Sampling is done throughout the year, thus preventing seasonal bias. The samples are grouped in four major geographic regions: Northeast, Midwest, South, and West. In the NHIS, disability refers to any long- or short-term reduction of a person's activity as a result of an acute or chronic condition. Chronic condition is a condition noticed for 3 months or more or a condition on the National Center for Health Statistics list of chronic conditions. Limitation of activity is a long-term reduction in a person's capacity to perform the average kind or amount of activities associated with his or her age group. (This survey includes a limitation in any activity including community, recreational, and other nonmajor activity.) Restriction of activity is described as behavior usually associated with a reduction in activity due to either short-term or longterm conditions. In general, the major activities people are expected to be able to perform depend on age--play for children under age 5, school attendance for older children, working at a job or business or keeping house for working-age adults, and caring for oneself and managing one's home without assistance from other persons for elderly adults. Of the total noninstitutionalized population in the United States, 34.2 million (14.1%) were limited in activity due to a chronic health condition in 1989. Of people limited in activity due to a chronic health condition, 10.1 million were unable to perform their major activity, 13.2 million were limited in amount or kind of the major activity they could perform, and 10.9 million were limited in nonmajor activity. Limitation in activity increases with age. Of the population aged 70 and over, 7.5 million (39%) were limited in activity. Of children under 18 years of age, 3.4 million (5.3%) were limited in activity. Impairment is defined in the survey as a chronic or permanent defect that results from disease, injury, or congenital malformation, whether or not the individual is limited in work or life activities. The Americans With Disabilities Act population size of 43 million evidently was taken from the NHIS survey count of the total number of noninstitutionalized individuals with impairments. The NHIS only covers the noninstitutionalized population; an additional 1.5 to 2 million individuals, most of whom are disabled, reside in institutions: nursing homes, mental hospitals, residential facilities, and mental retardation facilities. Survey of Income and Program Participation The Survey of Income and Program Participation (SIPP) is a longitudinal survey conducted by the Bureau of the Census. Core areas are covered at every survey period, while specific areas of interest are done in one period. As with the NHIS, the SIPP covers the noninstitutionalized population of residents living in the United States. The same households are interviewed every 4 months for two and a half years. A cycle of four interviews covering the entire sample, using the same questionnaire, is called a wave. The third wave to the 1984 panel of the SIPP is concerned with health and disability. The May/August 1984 third wave sample size consisted of 19,100 households, including about 49,000 people. The SIPP collects information based on need personal assistance as well as functional limitation. According to 1984 SIPP survey information, 37.3 million (20.6%) of all noninstitutionalized people aged 15 and over in the United States had a physical functional limitation. Of those people, 13.4 million (36.29%) had a severe functional limitation. Current Population Survey The Current Population Survey (CPS) is a monthly survey, conducted by the Bureau of the Census for the Bureau of Labor Statistics, which deals mainly with labor force data for the civilian noninstitutionalized population. The CPS sample is selected from decennial census files covering all 50 states and the District of Columbia. The sample is continuously updated. Questions relating to labor force participation are asked of all members in a household who are 14 years or older. In March, supplementary questions are asked about income and work disability. People are classified as having a work disability if they
The 1988 CPS reported 13.4 million people with a work disability. Of these, 31.6 percent were in the labor force and 14.2 percent were unemployed. G Return to TopDISABILITY STATISTICS RESOURCES Data from these surveys are available in great detail from the agencies conducting the surveys. For the NHIS, information is available from the National Center for Health Statistics. The SIPP is available from the Bureau of the Census. Programmatic data on disability are also available from agencies such as the Rehabilitation Services Administration (the state-federal vocational rehabilitation program), Social Security (SSI, SSDI), the Office of Special Education and Rehabilitative Services (Special Education), the Administration on Developmental Disabilities (ADD), and others. To reduce the difficulty in obtaining useful information on disability statistics, there are several recently developed information publications and information resources that provide additional analyses and are designed to provide the inquirer with targeted information culled from the extensive survey data. Development of many of these resources has been supported by the National Institute on Disability and Rehabilitation Research (NIDRR). _Disability in the United States: A Portrait From National Data, Susan Thompson-Hoffman and Inez Fitzgerald Storck, editors, covers a range of issues in disability definition, measurement, and concepts. The book includes chapters on measures of work status, earnings, the economics of disability, and other social policy issues informed by disability data. Appendix A to the book, published by Springer, includes a listing of major data sources for disability statistics. _Data on Disability From the National Health Interview Survey 1983-1985, by Mitchell P. LaPlante, presents data based on analysis of the NHIS. This publication, published by NIDRR, offers information in table form, based on several years of the NHIS. An update, pooling more recent NHIS data, is in preparation. _Chartbook on Disability in the United States_, also published by NIDRR, presents summary information from major national surveys, such as the SIPP, the NHIS, the CPS, and others, in easy-to-read, graphic form. The Chartbook's approach uses the most general national-level data, including estimates of the disability population; data on demographic characteristics of people with disability; data on diseases, injuries, and impairments causing disabilities; disability in elderly people and in children; and work disability. _Chartbook on Work Disability in the United States published in 1992, follows the same format as the Chartbook on Disability but provides a specific focus on work disability and on limitation on work activity in the working-age population. Again, the material is presented in easy-to-use, graphic form. _Digest on Disability in the United States_ provides a compilation of tables from major sources. Originally produced by Mathematica Policy Research in 1984, the Digest is currently being updated for NIDRR by Science Management Corporation. The Disability Statistics Program is a project funded by NIDRR to develop and disseminate statistical information on disability in the United States. The program develops, updates, and synthesizes data on major aspects of disability in the United States, including demography; epidemiology and health status; health care use, costs and coverage; employment and earnings; and social services, benefits, and activity. Research results are disseminated through reports, chartbooks, and journal articles. Disability Statistics Reports present indepth results of statis- tical analyses of national survey and program databases and are mailed to several thousand libraries, information centers, and disability organizations. The Disability Statistics Information Service provides statistical information on a wide variety of topics concerning disability in the United States. Users include persons with disabilities, researchers, health care providers, the media, disability organizations, and government agencies. Topics include demography, epidemiology, health services use, costs and coverage, employment and earnings, and social services and bene- fits. Write for call: Disability Statistics Program Information Service Institute for Health and Aging, School of Nursing University of California San Francisco 201 Filbert Street, Suite 500 San Francisco, CA 94133-3203 (415) 788-8916. Disability Statistics State State Estimates Capability helps to meet the need for state estimates of disability, which has become more important with the development of technology assistance projects and with the passage of the Americans With Disabilities Act. Employers, as well as providers of transportation, communication, housing, and education, must plan to accommodate individuals with disability and would benefit from better knowledge of local and state disability data. The 1990 census provides direct estimates for states, counties, and places. However, few local surveys exist. To address this issue, a special statistical study was undertaken to develop a statistical approach to local-area estimating. This research, also supported by NIDRR, funded as part of the Disability Statistics Program, and conducted with assistance and cooperation from the National Center for Health Statistics, has resulted in the development of statistical estimates of disability. In one example of the use of this statistical estimation service, the state vocational rehabilitation agency in Oregon has been able to develop detail on disability prevalence in its state population in far greater detail than would otherwise be available. This analytic capability, which is of use to state agencies and service planners, as well as to companies interested in developing products for the disability market, is available on a consulting basis through InfoUse in California: InfoUse: Disability Statistics Estimates 2560 - 9th Street, # 216 Berkeley, CA 94704 (510) 549-6520 FUTURE DIRECTIONS IN DISABILITY STATISTICS While there is a good deal of current effort to make disability information more available, there are shortcomings of current surveys. Several major efforts aimed at improving the situation are important. The _Disability Studies Quarterly_, published by Brandeis University and edited by Irving Zola, dedicated its summer 1990 issue to disability demographics. This issue gives an overview of the actors and the issues in the production and use of disability statistics. The major theme developed is the politics of disability statistics and the importance of developing the concept and translating it for public awareness and media use. Much of the discussion on demographics centers on the importance of definitions and the difficulty in arriving at a common ground, given underlying differences in political intent and uses of disability demographics in policy debate. An Interagency Committee on Disability Statistics has been implemented at the federal level to coordinate ideas and funds for disability-related issues and to work toward improved statistics in the national surveys. This committee considers issues such as the addition of more specific disability questions to national surveys and the coordination of agency efforts. Several expanded efforts are already underway. The 1990 SIPP and the 1991 NHIS have expanded their information on functional limitations. The National Center for Health Statistics plans a national disability survey in the next few years. The National Academy of Sciences Committee on National Statistics has been examining further direction in disability statistics. The committee held a workshop in 1990 and has published the results of that workshop in Disability Statistics: An Assessment. The committee identified a number of issues to be resolved: - Concepts, definitions, and measurement problems. As discussed in this _BRIEF_, inconsistency in definitions, both among major United States surveys and internationally, causes confusion. Without clarity of definition, interpretation of measures for policy purposes is difficult. - Coordination. Better coordination among data producers, more communication among producers and users, and more communication among users would lead to a better system. - Data needs for policy analysis. Gaps here include availability of data at local or state levels, a single disability indicator or rate (like, for instance, the infant mortality rate), and information on service needs and costs and barriers to receipt of services. Longitudinal studies are also lacking. Other issues included data linkages and data matching, data analysis, sampling, and international comparability. Underlying all of this discussion is the continuing argument over which agency should pay for collection of information, since many agencies are currently involved in pieces of the puzzle. The committee recommended the creation of a panel to study disability statistics and to continue the effort to expand this field to a new level. The development of better statistical information will obviously be a long-term project, involving a number of players. Possibly because statistics is generally regarded as a "dry" topic, or a topic requiring an affinity for mathematics or computer skills, most of the current development effort is being carried on by statistics experts and data producers. With the broader interest in estimating the size of the disability population that comes with the ADA and its regulations, there may be the opportunity for additional investment in advances in the development and informed use of disability statistics. G Return to TopAdams, P.F., & Benson, V. (1990). _Current estimates from the National Health Interview Survey, 1989_. Vital Health Stat., 10 (176). National Center for Health Statistics. Kraus L.E., & Stoddard S. (1991). _Chartbook on work disability in the United States_. (An InfoUse Report). Washington, DC: National Institute on Disability and Rehabilitation Research. Kraus, L.E., Stoddard, S. (1989). _Chartbook on disability in the United States_. (An InfoUse Report). Washington, DC: National Institute on Disability and Rehabilitation Research. LaPlante, M.P. (1988). _Data on disability from the National Health Interview Survey, 1983-1985_. (An InfoUse Report). Washington, DC: National Institute on Disability and Rehabilitation Research. Levine, D.B., Zitter, M., & Ingram, L. (Eds). (1990). _Disability statistics: An assessment_. Committee on National Statistics, Na- tional Academy Press. Mathematica Policy Research, Inc. (1984, June). _Digest of data on persons with disabilities_. Washington, DC: Author. Thompson-Hoffman, S., h Storck, I.F., (Eds). (1991). _Disability in the United States: A portrait from national data_. New York: Springer Publishing Company. Zola, I.K. (Ed). (1990, Summer). _Disability Studies Quarterly_, 10 (3). (Issue dedicated to disability demographics). ---------------------------------------------------------------- We welcome your comments on this BRIEF and on BRIEFS put out during the past year, as well as your suggestions for topics and for improving this publication of Conwal Incorporated. Prepared by Conwal Incorporated, 510 N. Washington St., Suite 200, Falls Church, VA 22046. =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- This document was scanned into electronic form for ABLE INFORM BBS: 301/589-3563 or FTS 301/427-0280 (data); Silver Spring, MD USA Internet telnet: fedworld.gov, then dd115 from the Top Menu. Internet mail: naric@cap.gwu.edu Electronic release date: January 25, 1994 =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
Revealing, Humorous and Poignant Moments Horror novelist Stephen King talks about his first book with sexual content and his moments of personal terror. And he reveals his greatest fear: Terry Gross: At the end of your book Gerald's Game, the main character is losing her mind. Is that in particular a great fear for you? SK: Probably of all things, what I would be most afraid of is losing my reason, losing my ability to differentiate between reality and unreality. I've had some personal experience with people who have lost that ability, at least temporarily. And for somebody with a strong imagination--somebody who's trained that imagination, particularly--it would be akin to having a cage full of tigers, and someone comes in one day and says, "Sorry, the lock doesn't work anymore. They can all come out whenever they want to." Journalist Bill Moyers talks about being Lyndon Johnson's press secretary and about the controversies surrounding mythologist Joseph Campbell. Moyers also recalls his days as a student preacher in farm country:I remember preaching a sermon on sin. A farmer came up to me after it was over and said, "Brother Moyers, you haven't sinned. You're not old enough to have sinned enough to preach about it." And I felt that was probably right; I'd better go out and sin a little. TG: Did you? BM: I did. TG: Would you like to tell us what you did when you made that decision? BM: I went into journalism--isn't that sin enough? World-traveling war surgeon Chris Giannou talks about designing a war-zone hospital and about accepting his own mortality. He explains how he performs triage under fire:Triage is triage, and you have your rules. The first are those who need surgery. And then you have patients who need surgery but can wait. You have mildly injured patients, and those who would require so much time and effort that you would risk the lives of some of the others. It's one of the most difficult decisions to make in medical practice. TG: Did anybody ever hold a gun to you and say, "Treat my son, or I'll kill you"? CG: That's happened. TG: What did you say? CG: It's all part of triage. At that point, that's your No. 1 category! It would be stupid to negotiate under those circumstances. I have performed surgery with the barrel of a gun stuck between my ribs. Actor Michael Caine talks about speech and movement, and about playing flawed characters. He recalls training himself to act, in working-class London:When I was a young lad, I found a book in the public library, How to Teach Yourself Film Acting. And the first thing it said was you must not blink. And so I walked around this district of London which was used to some very rough people, without blinking. I looked like a serial killer. I frightened the life out of people. I used to have long conversations and never blink, and I would watch people getting hypnotized. They would walk away from a simple conversation with me quite flummoxed. Mary Previte, administrator of the Camden County Youth Cent er (a youth pretrial detention center), talks about giving troubled kids a predictable environment and about her childhood years in a Japanese prison camp. She observes why violent teenagers feel no remorse:For a human being who, from the earliest age, has been violated--beaten or shouted at; a four-year old, for instance, who has to be responsible for taking care of himself and other brothers and sisters-- there is a survival response called distancing. There is no greater terror for children than having no one to take care of them. And the terror hides; it runs into the cracks and crannies of a child's soul. The feelings stop. You hear it when you listen to a boy or girl talking to you. A kid who has been abandoned--I'm waiting to hear the tears, I'm waiting to hear the anger; I'm waiting to hear the voice go up, or go to a whisper. I hear this flat monotone talk about horrors: about being robbed at gunpoint, about going to a funeral to see a friend buried. It's like post-traumatic stress syndrome. The feelings disappeared someplace, long ago. Autistic autobiographer Donna Williams talks about the act of communication and about her social network. She evokes the sense experience of autism:Things like touch are difficult for me to interpret--even from a physical perception point, let alone closeness and social connotations. My perception of my body is in bits. There's physical sensation-- or there's some emotion with no physical interpretation. It's all very mono. And touch sensitivity makes it very frightening. It can send me through the roof. If my touch is very hyper at the time, having someone walk past me or even touching myself is a torture. ... And it's very hard sometimes to get the mechanics going to say, "I don't want this." First you've got to interpret not want, and to do that you've got to be able to read your own body messages. So it means I'm very vulnerable in the company of other people who think they like me. You're much safer with people who don't give a damn. Syndicated cartoonist Lynda Barry talks about the foibles she shares with her characters and her college career as a Serious Artist. She recalls her childhood imagination:I definitely had a heavy fantasy life. I wanted to do something every day that no one in the world had ever done. But it didn't matter how small it was. Like, I would take a peanut, open it and think, "No one has ever seen this peanut." I would write an "x" on it with a flair pen, and I'd eat it. Then I'd walk around the rest of the day feeling cocky. Floyd Cochran, former national spokesperson and recruiter for the white supremacist group Aryan Nation , talks about why he renounced his racist views and about the religious underpinning increasingly employed by racist groups. He unmasks the deep hatred that lives on in the subtler, more studied racist of the '90s:There are very few racists today who will stand on a street corner and say, "Let's go out and kill people." First of all, you'd be put in jail for it. And second of all, the propaganda effect: It doesn't work. That's what makes (today's) racists more dangerous — they have realized these things and they're becoming slicker. In public, I'd tell people I was a white separatist; it's much softer on the ears, much more palatable. On the compound, we dropped all that and talked explicitly about killing people. I sat in on a conversation about what to do when a dead body falls out of the oven: Do you pick it up and put it back in, or do you find someone to do it for you? Singer Tony Bennett talks about his recent comeback and recalls his early love of music:I made believe opera was for snobs, but secretly I adored it. I still do. I'm thrilled when I hear a great voice like Pavarotti's. I know exactly what he's doing--I have a good ear for opera. Those are the real singers. But the entertainment side, that had a lot of wit to it. And I just loved to sing. I remember very clearly that when I was a singing waiter, I said, "If nothing ever happens to me, I'd be happy the rest of my life just doing this." NPR reporter Deborah Amos talks about being a woman journalist in the Middle East and about the fundamentalist police in Arab countries. She explains how she handled the dangers of wartime reporting:TG: Before you started reporting on wars, did you know you had it in you to be in that kind of situation and be brave about it? DA: No, and the question never occurred to me. Beirut was the test of it--I thought about it later, about why I would have put up with any of it. And I think the real answer is, I don't have an imagination. I had a long conversation one night with a colleague who refused to be in a ground combat [press] pool. He was afraid of fuel-air explosions. I knew vaguely about fuel-air explosions, but I couldn't imagine what one would look like. I couldn't imagine that I would be in a place and all of my breath would be sucked out and I'd be burned to a cinder. I don't think it's courage: I just can't think up those things! G Return to Top ======================================================="Universal Design is 'an approach to design that acknowledges the changes experienced by everyone during his or her lifetime. It considers children, old people, people who are tall or short, and those with various disabilities. It addresses the lifespan of a human being beyond the mythical average person.'"-Gordon Mansfield, former Chair, Architectual and Transportation Barriers Compliance Board Throughout history, humankind has attempted to form the built environment and to develop assistive devices or tools to enhance quality of life and ease the stress and strain of daily activities. Unparalleled advancement in science, technology and information transfer , have brought about a rapid change in lifestyle. Agriculture and manufacturing systems effectively provide needed food and products for growing populations. Public health programs and medical breakthroughs have reduced pestilence and disease. The result, a dramatically increasing life expectancy. More people are living healthier and longer. With more people living and working with temporary or permanent impairments there is an additional need for supportive services and environments to accommodate workplace, transportation and residential needs. Older persons who are more frail and cognitively impaired need environments that are safe, that encourage self-help, that support family and professional caregivers assisting with activities of daily living. As one moves through the life span, from infancy into childhood, through teens and on to adulthood, to raising a family and on to old age, the built environment needs to be accommodating. Individual needs and capabilities are always changing, temporary or permanent disabilities may develop. Why must individuals adapt themselves to the built environment? Can not the build environment be designed to be adaptable to human needs? During the recent past the design industry has used an anthropomorphic standard of a human being, average in size, height, weight, strength, no average people. People of all ages are differently abled and require environments that are supportive and adaptive, that en-able and do not disable. How many times have we felt frustration that we couldn't easily find a light switch, conveniently access a meeting room, a rest room, a kitchen cabinet shelf, or find our way at home, safely in the dark, to the bathroom or down the stairs. How many times have we struggled to pull a luggage cart up stairs, or maneuver a stroller, or cart off a curb, or through a revolving door? The need for a design concept that strives to serve the wide range of needs and activities of people has derived from recognition that we could do better in the way we structure, form and produce products for use in the built environment. This recognition has brought about development of a notion about design approach and philosophy, called "Universal Design" Universal design is an attempt to provide environments that are usable by a wide range of people, young or old, short or tall, able bodied or disabled. It aims to create environments that will be supportive through the life span. It recognizes that the concept may never be totally achieved, that not all environments can be designed to serve 100% of all user needs. It seeks to serve as many users with different needs, as much as possible. In a sense universal design is seamless. It can be and should be unnoticed. Universal design elements and products can serve a wide spectrum of users Some products and design elements are already universal and in many instances are now accepted as ordinary, and they would be missed if not present in the environment. Others can be made so without much difficulty or expense. Examples of universal design features are: a curb cut at street intersections that could serve a mother with a baby stroller, an elderly person with a walker or a wheelchair user; a person carrying packages free flow; lever handle door hardware that enables use of closed fisted hand or an elbow to release; a motion detector device that turns on a night-light in the bedroom to reduce the possibility of a tripping accident. Universal design succeeds because it goes beyond specialization. The concept promotes designing every public space, building or product so that everyone can use them to the greatest extent possible-every faucet, light fixture, shower stall, public telephone, or entrance. Universal design is a revolutionary but practical leap forward in the evolution of the design of the built environment. When designers, builders, manufacturers and users seize this concept, universal design will become common practice, convenient, and profitable.
[For further discussion, see definition of accessible, adaptable and universal design under Universal Design resources, Center for Universal Design.] ======================================================== This information is distributed through the Universal Design Information Network of Adaptive Environments and is funded by the Disability Rights Section of the U.S. Department of Justice. G Return to Top'Distorted Representations': an Excerpt From a New Book on Disability Following is an excerpt from Simi Linton's Claiming Disability: Knowledge and Identity (New York University Press, 1998), about the advent of the cultural-studies approach to understanding disability. We have come out not with those brown woollen lap robes over our withered legs, or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work -- straightforward, unmasked, and unapologetic. We are, like Crosby, Stills, and Nash told their Woodstock audience, letting our "freak flag fly." And we are not only the high-toned wheelchair athletes seen in recent television ads but the gangly, pudgy, lumpy, and bumpy of us, declaring that shame will no longer structure our wardrobe or our discourse. We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms, but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning. Our symptoms, though sometimes painful, scary, unpleasant, or difficult to manage, are nevertheless part of the dailiness of life. They exist and have existed in all communities throughout time. What we rail against are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure. It is our closeted selves that have been naturalized within the academic curriculum. Even a cursory review of the curriculum reveals only patronizing and distorted representations of disability, and these are left largely unexamined and unchallenged. But minor housecleaning will not rid out the deeper structural elements, the scholarly conventions, and theoretical underpinnings, within which those representations are deemed valid and useful. A closer look reveals problems in both the structure and content of the curriculum, predicated on a narrowly conceived interpretation of disability. G Return to TopA Brief Introduction to Disabilities A brief introduction to the major disability groups and some specific barriers to accessibility they encounter A significant portion of our population (over thirty million in the U.S.) has impairments which reduce their ability to effectively or safely use standard consumer products. These impairments may be acquired at birth or through accident or disease. Note that many impairments which result in disabilities are associated with aging. This is especially significant, as the population as a whole is growing older. Although there is a tremendous variety of specific causes, as well as combinations and severity of disabilities, we can most easily relate their basic impact to the use of consumer products by looking at four major categories of impairment. The four categories are: Visual Impairments Hearing Impairments Physical Impairments Cognitive/Language Impairments In addition, we will discuss the special case of seizure disorders as well as some of the common situations of multiple impairments.Visual impairment represents a continuum, from people with very poor vision, to people who can see light but no shapes, to people who have no perception of light at all. However, for general discussion it is useful to think of this population as representing two broad groups: those with low vision and those who are legally blind. There are an estimated 8.6 million people with visual impairments (3.4% of the U.S. population). In the elderly population the percentage of persons with visual impairments is very high. A person is termed legally blind when their visual acuity (sharpness of vision) is 20/200 or worse after correction, or when their field of vision is less than 20 degrees; in the best eye after correction. There are approximately 580,000 people in the U.S. who are legally blind. Low vision includes problems (after correction) such as dimness of vision, haziness, film over the eye, foggy vision, extreme near- or farsightedness, distortion of vision, spots before the eyes, color distortions, visual field defects, tunnel vision, no peripheral vision, abnormal sensitivity to light or glare, and night blindness. There are approximately 1.8 million people in the U.S. with severe visual impairments who are not legally blind. Many diseases causing severe visual impairments are common in those who are aging (glaucoma, cataracts, macular degeneration, and diabetic retinopathy). With current demographic trends toward a larger proportion of elderly, the incidence of visual impairments will certainly increase. Functional Limitations Caused by Visual Impairments Those who are legally blind may still retain some perception of shape and contrast or of light vs. dark (the ability to locate a light source), or they may be totally blind (having no awareness of environmental light). Those with visual impairments have the most difficulty with visual displays and other visual output (e.g., hazard warnings). In addition, there are problems in utilizing controls where labeling or actual operation is dependent on vision (e.g., where eye-hand coordination is required, as with a computer "mouse"). Written operating instructions and other documentation may be unusable, and there can be difficulties in manipulation (e.g., insertion/placement, assembly). Because many people with visual impairments still have some visual capability, many of them can read with the assistance of magnifiers, bright lighting and glare reducers. Many such people with low vision are helped immensely by use of larger lettering, sans-serif typefaces, and high contrast coloring. Those with color blindness may have difficulty differentiating between certain color pairs. This generally doesn't pose much of a problem except in those instances when information is color coded or where color pairs are chosen which result in poor figure ground contrast. Key coping strategies for people with more severe visual impairments include the use of braille and large raised lettering. Note, however, that braille is preferred by only 10% of blind people (normally those blind from early in life). Raised lettering must be large and is therefore better for indicating simple labels than for extensive text. Hearing impairment is one of the most prevalent chronic disabilities in the U.S. Approximately 22 million people in the U.S. (8.2%) have hearing impairments. Of those, 2.4 million have severe to profound impairments. Hearing impairment means any degree and type of auditory disorder, while deafness means an extreme inability to discriminate conversational speech through the ear. Deaf people, then, are those who cannot use their hearing for communication. People with a lesser degree of hearing impairment are called hard of hearing. Usually, a person is considered deaf when sound must reach at least 90 decibels (5 to 10 times louder than normal speech) to be heard, and even amplified speech cannot be understood. Hearing impairments can be found in all age groups, but loss of hearing acuity is part of the natural aging process. 23% of those aged 65 to 74 have hearing impairments, while almost 40% over age 75 have hearing impairments. The number of individuals with hearing impairments will increase with the increasing age of the population and the increase in the severity of noise exposure. Hearing impairment may be sensorineural or conductive. Sensorineural hearing loss involves damage to the auditory pathways within the central nervous system, beginning with the cochlea and auditory nerve, and including the brain stem and cerebral cortex (this prevents or disrupts interpretation of the auditory signal). Conductive hearing loss is damage to the outer or middle ear which interferes with sound waves reaching the cochlea. Causes include heredity, infections, tumors, accidents and aging (presbycusis, or "old hearing"). Functional Limitations Caused by Hearing Impairments The primary difficulty for individuals with hearing impairment in using standard products is receiving auditory information. This problem can be compensated for by presenting auditory information redundantly in visual and/or tactile form. If this is not feasible, an alternative solution to this problem would be to provide a mechanism, such as a jack, which would allow the user to connect alternative output devices. Increasing the volume range and lowering the frequency of products with high pitched auditory output would be helpful to some less severely impaired individuals. (Progressive hearing loss usually occurs in higher frequencies first.) Although not prevalent yet, there is much talk of using voice input on commercial products in the future. This, too, will present a problem for many deaf individuals. While many have some residual speech, which they work to maintain, those who are deaf from birth or a very early age often are also nonspeaking or have speech that cannot be recognized using current voice input technology. Thus, alternatives to voice input will be necessary to these individuals to access products with voice input. Familiar coping strategies for hearing impaired people include the use of hearing aids, sign language, lip-reading and TDD's (telecommunication devices for the deaf). Some hearing aids are equipped with a "T-coil" as well, which provides direct inductive coupling with a second coil (such as in a telephone receiver) in order to reduce ambient noise. Some other commercial products could make use of this capability. ASL (American Sign Language) is commonly used by people who are deaf. It should be noted, however, that this is a completely different language from English. Thus, deaf people who primarily use ASL may understand English only as a second language, and may therefore not be as proficient with English as native speakers. Finally, telecommunication devices for the deaf (TDD's) are becoming more common in households and businesses as a means for deaf and hard of hearing people to communicate over the phone. TDD's have always used the Baudot code, but newer ones receive both Baudot and ASCII. Functional Limitations Caused by Physical Impairments Problems faced by individuals with physical impairments include poor muscle control, weakness and fatigue, difficulty walking, talking, seeing, speaking, sensing or grasping (due to pain or weakness), difficulty reaching things, and difficulty doing complex or compound manipulations (push and turn). Individuals with spinal cord injuries may be unable to use their limbs and may use "mouthsticks" for most manipulations. Twisting motions may be difficult or impossible for people with many types of physical disabilities (including cerebral palsy, spinal cord injury, arthritis, multiple sclerosis, muscular dystrophy, etc.). Some individuals with severe physical disabilities may not be able to operate even well-designed products directly. These individuals usually must rely on assistive devices which take advantage of their specific abilities and on their ability to use these assistive devices with standard products. Commonly used assistive devices include mobility aids (e.g., crutches, wheelchairs), manipulation aids (e.g., prosthetics, orthotics, reachers) communication aids (e.g., single switch-based artificial voice), and computer/device interface aids (e.g., eyegaze-operated keyboard) . Nature and Causes of Physical Impairments Neuromuscular impairments include:
Skeletal impairments include joint movement limitations (either mechanical or due to pain), small limbs, missing limbs, or abnormal trunk size. Some major causes of these impairments are:
Cognitive/Language Impairments Functional Limitations Caused by Cognitive/Language Impairments The type of cognitive impairment can vary widely, from severe retardation to inability to remember, to the absence or impairment of specific cognitive functions (most particularly, language). Therefore, the types of functional limitations which can result also vary widely. Cognitive impairments are varied, but may be categorized as memory, perception, problem-solving, and conceptualizing disabilities. Memory problems include difficulty getting information from short-term storage, long term and remote memory. This includes difficulty recognizing and retrieving information. Perception problems include difficulty taking in, attending to, and discriminating sensory information. Difficulties in problem solving include recognizing the problem, identifying, choosing and implementing solutions, and evaluation of outcome. Conceptual difficulties can include problems in sequencing, generalizing previously learned information, categorizing, cause and effect, abstract concepts, comprehension and skill development. Language impairments can cause difficulty in comprehension and/or expression of written and/or spoken language. There are very few assistive devices for people with cognitive impairments. Simple cueing aids or memory aids are sometimes used. As a rule, these individuals benefit from use of simple displays, low language loading, use of patterns, simple, obvious sequences and cued sequences. Types and Causes of Cognitive/Language Impairments Mental Retardation. A person is considered mentally retarded if they have an IQ below 70 (average IQ is 100) and if they have difficulty functioning independently. An estimated 3% of Americans are mentally retarded. For most, the cause is unknown, although infections, Down Syndrome, premature birth, birth trauma, or lack of oxygen may all cause retardation. Those considered mildly retarded (80-85%) have an IQ between 55 and 69 and are considered educable, achieving 4th to 7th grade levels. They usually function well in the community and hold down semi-skilled and unskilled jobs. People with moderate retardation (10%) have an IQ between 40 and 54 and are trainable in educational skills and independence. They can learn to recognize symbols and simple words, achieving approximately a 2nd grade level. They often live in group homes and work in sheltered workshops. People with severe or profound retardation represent just 5-10% of this population.
Age-Related Disease. Alzheimer's disease is a degenerative disease that leads to progressive intellectual decline, confusion and disorientation. Dementia is a brain disease that results in the progressive loss of mental functions, often beginning with memory, learning, attention and judgment deficits. The underlying cause is obstruction of blood flow to the brain. Some kinds of dementia are curable, while others are not. A number of injuries or conditions can result in seizure disorders. Epilepsy is a chronic neurological disorder. It is reported that approximately 1 person in 15 has a seizure of some sort during his life, and between .5% and 1.5% of the general population have chronic, recurring seizures. A seizure consists of an explosive discharge of nervous tissue, which often starts in one area of the brain and spreads through the circuits of the brain like an electrical storm. The seizure discharge activates the circuits in which it is involved and the function of these circuits will determine the clinical pattern of the seizure. Except at those times when this electrical storm is sweeping through it, the brain is working perfectly well in the person with epilepsy. Seizures can vary from momentary loss of attention to grand mal seizures which result in the severe loss of motor control and awareness. Seizures can be triggered in people with photosensitive epilepsy by rapidly flashing lights, particularly in the 10 to 25 Hz range. It is common to find that whatever caused a single type of impairment also caused others. This is particularly true where disease or trauma is severe, or in the case of impairments caused by aging. Deaf-blindness is one commonly identified combination. Most of these individuals are neither profoundly deaf nor legally blind, but are both visual and hearing impaired to the extent that strategies for deafness or blindness alone won't work. People with developmental disabilities may have a combination of mental and physical impairments that result in substantial functional limitations in three or more areas of major life activity. Diabetes, which can cause blindness, also often causes loss of sensation in the fingers. This makes braille or raised lettering impossible to read. Cerebral palsy is often accompanied by visual impairments, by hearing and language disorders, or by cognitive impairments. |
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If you have questions or comments about any of the material contained in this web, please e-mail Janet Schrock at janets@sfsu.edu. This page was last updated Thursday, January 24, 2002. |
