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Technology for the Next Millennium: Building a Framework for Collaboration

Alexandra Enders, OTR/L, ATP
The University of Montana Rural Institute
Missoula, Montana, USA

Table of Contents

Back to Basics

A Framework For Mutual Understanding

Recognizing Technology's Role in an Individual's Support System

Environment and Participatory Role Are Dynamic Contexts

Environmental Demands Require Different Sets of Support Elements

Model as a Measurement Tool

Design for Individual Solutions & the Resource Gap

Universal Design: Individuals in Broader Participatory Context

Bridging the Gap: Developing a Collaborative Approach to Advocacy

Universal Design: More than Disability Access

Reframing the Resource Allocation Question

Bridging the Gap: Recognizing and Respecting Parallel Perspectives

Disability in Context: Reframing the Way We Think about Disability

Characteristics of Old and New Paradigms

Back to Basics

Most of us take it for granted that technology plays a powerful role in the lives of people with disabilities. Professionally, we may focus on just one type of technology (e.g. wheelchairs or computers or sensory aids), or technology applications in one setting (e.g. school or work), or for one functional role (e.g. communication or driving), or within one reimbursement scheme (e.g. health care or employment). However, members of organizations like RESNA and AAATE tend to share a common understanding that technology is used in the context of the whole life of a person with a disability, and that technology needs to function as a part of an individual's total system for support, and not just in one role, setting, or functional application. Technology oriented professionals also usually share the assumption that technology is used to DO something, to participate in the community, not just to improve body function or enable functional activities.

These beliefs are so basic, that you, like me, may never have said them aloud. And you probably assume that everyone else thinks like you do. If you have a disability, the concept is so basic, that it is hard to imagine any other way to think about technology, and you may question why professionals would even discuss it. If you are a professional, your colleagues and policymakers may have difficulty understanding why you cannot stay narrowly focused on only the specialized technology you work with. They may expect you to function only within a single specific milieu, e.g. health care, educational, or vocational applications. They probably do not understand why you are actively promoting concepts such as universal design, why you believe that most research and development -- whether it is related to education, employment, housing, transportation, telecommunications should actively include disability related technology issues as an integral part of the agenda..

When one group of stakeholders is saying things like: "Why are you even discussing such basic things, it is only common sense?"; while other stakeholders have a difficult time understanding the relevance of these underlying concepts, there will undoubtedly be high levels of frustration, and wide gaps between stakeholder groups. There will also be disagreements in how and where resources are allocated, and the methods which should be used to achieve societal change.

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A FrameworkFor Mutual Understanding

In order to develop a framework for collaboration, it is necessary to frame the discussion of technology and resource allocation within the larger discussion of disablement now underway internationally. One of the places to learn about changing perspectives, is in the revisions underway in the World Health Organization (WHO) classification scheme for human functioning, ICIDH (International Classification of Impairments, Disabilities, and Handicaps). The ICIDH-2 (International Classification of Impairments, Activities, and Participation) "in addition to providing a scientific model for the study of functioning and disablement, meets the urgent need for a common, international language for globalized data collection, research, health care allocation & management, and social welfare programming".

This broader view reflects the emerging ecologic perspective: that disability is not inherent in an individual, but results from an interaction between the person and the environment. (see charts at the end of this paper; note that environment always includes physical, social, and economic aspects) Although there are significant differences both inter-nationally and intra-nationally, the prevailing medical model framework in resource allocation patterns globally has made it difficult to fully realize technology's promise for people with disabilities. While technology interventions at the body/organ level (see charts) of intervention are fairly well understood, technology interventions at the function/activity level are only beginning to get adequate support, and technology interventions at the individual participation level are novel, and usually tightly restricted to a narrow application. When they exist, they are likely to be covered in only one participation category, for example "employment" or "education" that are less medical model oriented. There are few models anywhere in existing policy of a "full participation" perspective which specifically incorporates technology supports for an individual across multiple environments (not just at home, but also at school, at work, in the community, while traveling, everywhere you want to be).

Some of the conflict between activist consumers and policymakers can be clearly seen using this model ­ consumers take participation for granted as a human right. So does everyone else -- it is why restricting participation by putting people in jail is a punishment. Participation is such an ingrained and subtle concept that most of us do not even think about it in our daily lives, we take it for granted. The Americans with Disabilities Act (ADA), a U.S. civil rights law, protects people with disabilities from discrimination in participation. However, most disability policy, as currently implemented, has not yet really incorporated "participation" as the appropriate outcome measure. Technology for life, all of life, in constantly changing environments, may mean something totally different to an individual with a disability, than it does for a policymaker or program administrator.

Traditional categorical distinctions, though firmly fixed in public policy, do not make much sense in the emerging disability paradigms, which present a new way to think about the basis for disability (the interaction between person and environment) and new integrated ways for improving interaction. (See charts at end of paper) Developing a common approach to working collaboratively within these new paradigms is an exciting challenge for us all, especially since technology is such an essential feature of person-environment interaction.

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Recognizing Technology's Role in an Individual's Support System

No one but the most dedicated techie would claim technology to be the only solution to all of life's challenges. And only naked technophobes (a person who does not like, or is fearful of, technology use) refuse to acknowledge their dependence on technology. Just because clothing, shoes, eyeglasses, and indoor plumbing are taken for granted, does not mean they are not technology! Most of us recognize that more than just technology is needed to develop and maintain an adequate support system. Everyone's support system also includes other people collaboratively linked within communities, and a personally evolving set of skills/strategies used to interact with the world.

It has been a challenge to describe how the multiple aspects of a support system fit together, because a support system is not linear, the components are not a continuum, nor are they discrete alternatives to each other. As a simple way to depict the basic elements of a support system, consider it as a triangle with three sides. Behavioral/emotional aspects are another dimension, but for purposes of simplicity, two dimensional images will be used.

Figure 1. Elements of a Specialized Support System: The first triangle depicts the elements of a specialized support system. Because we are discussing disability supports, the legs of the triangle are labeled Assistive Technology (AT), Personal Assistance Services (PAS), and Adaptive Strategies (AS), all disability jargon. The area of the triangle is labeled Functional Ability. The triangle focuses solely on the specialized and/or highly individualized aspects in a support system. The shape constantly changes in response to environments and participatory role.

Figure 2. Elements of any Generic Support System: The second triangle, shows the elements of any individual's support system. The sides are labeled Tools, Strategies, Cooperation; and the area is labeled Human Accomplishment. Its shape is constantly changing as the individual's environmental situation changes, because as environmental demands change, the support elements must also adjust. It also changes when the individual changes roles (e.g. parent, student, pianist) within the same environment. Individuals can find support for specialized needs here, especially when the generic tools, communities, and skill development opportunities are built flexibly enough to incorporate a wide range of experience and interests.

Figure. 3. An Individual Support System: Neither the first or second triangle alone can accurately describe a support system, since they never occur separately. The shapes must be "nested". The Human Accomplishment triangle is always larger than the Functional Ability triangle. (The only exception may be if you are very sick, or very rich, and can afford to have your every support customized). To get a more accurate picture of a support system for a person with a disability, lay the larger Human Accomplishment triangle over the smaller Functional Ability triangle, so the Functional Ability triangle is embedded in the larger Human Accomplishment triangle . Both large and small triangles are dynamic, responding to changes in environment and participatory role.

Every human being has a pair of these triangles.

Please pause here, and think about your own support system. And what areas of your life fall into a smaller embedded triangle. For me, besides being a woman --which is a large niche market in itself ­ I play in the mountains summer and winter, and use specialized technologies, some custom fitted to me. I do not call my backcountry skis or 4 season tent "assistive technology" or "adaptive technology", mostly I just call it expensive. But it is the combination of the right gear, acquired skills, and people with similar interests, that allow me to venture into mountain environments. In the backcountry, my smaller triangle may be almost as large as the big triangle ­ there are few generic supports. Sometimes, when I am out solo, I get a little scared to think what would happen to me if I had a major equipment failure or loss. You don't just call for help on a mobile phone ­ most wilderness areas are out of service range. That does not mean my support system is inadequate, it just means that it needs to be appropriate for the environment I am functioning in.

One of the problems with focusing primarily on an individual's disability, is that professionals can forget that everyone, including people with disabilities, lives in a dynamic support envelope. Too often the focus gets restricted, and we only pay attention to the part related to the "special needs" relevant to disability. The bigger picture, the generic supports needed to exist in the community, either gets overlooked or taken for granted. And hence contextual considerations, both the strengths and weaknesses in real life, are too often omitted from policy, planning, and practice in disability related systems. And when context is missing, the gap grows larger between consumers , professionals, and policy makers.

Support Systems Are Dynamic

Figure 4. Support Systems Change: Support systems are by their very nature dynamic. Different situations call for different balances among elements of a personal support system. Consider these 4 different shaped triangles. They are different shapes because the lengths of the legs are different -- reflecting the fact that the quantity of each of the three types of support (AT, PAS, AS) varies in different environments.

In each situation, the Functional Ability triangle is also embedded in a larger Human Accomplishment triangle, which is also changing shapes in response to the individual's environment and participatory role.

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Environment and Participatory Role Are Dynamic Contexts:

Motion is needed to convey an individual's continuous dynamic interplay with the environment. Imagine a cartoon, with a small anthropomorphic triangle: moving out the door of the house, changing shape to reflect the changing nature of the support system, changing and morphing continuously throughout the day, as the environment, roles, activities, and available supports shift. It is easy to forget the continuously dynamic nature of supports, especially when professionals are focused primarily on a single environment, (e.g. work) or a single role (e.g. student). For example, we may assist in developing and equipping an ideal environment at home, forgetting that the person also needs to be able to go to the toilet at school or work, and use the phone at the airport. And while the computer at school may be appropriately accessible, the system at the neighborhood public library may not be.

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Environmental Demands Require Different Sets of Support Elements:

There is a strong correlation between the friendliness of the environment, and the need for specialized support systems elements. The more hostile the environment becomes, the more individualized supports will be needed to venture out into it successfully. A climber at an indoor climbing wall in a health club requires very different technology, skills, and team members, than a mountaineer attempting to summit Mount Everest. Both are climbers (role), both are gaining elevation one step at a time (activity). However Everest is far more hostile, and much less forgiving, than the protected environment in an urban gym. Climbing wall specific tools and skills and companions, by themselves, will be inadequate preparation for a Himalayan climb. The parallels in disability might compare a person with a disability learning skills and using technology within a hospital environment, with another individual with a mobility disability attempting to navigate a completely inaccessible city.

The more "friendliness" that can be built into the environment, the fewer specialized supports the person will need to carry along with them. While elevators are not likely to be installed on Everest (though there is a train up through the Eiger in Switzerland, so anything is possible) curbcuts on city streets, and accessible buses reduce the "hostility" of the environment. Seeing the problem as being in the individual (the old model) as opposed to seeing the environment/society as being disabling (the new model), leads to design priorities for building stair climbing wheelchairs as an alternative to building ramps and curb cuts. (See charts, and refer to ICIDH-2) However, gaps widen between professionals and consumers when resource allocation decisions are posed as "either-or" alternatives, rather than as complementary options. As skeptical as I have always been about stair climbing wheelchair projects, I am excited by the new wheelchair under development in the US, that actually can climb stairs (on 2 wheels), and move through gravel and sand, among other positive characteristics. But if the availability of this chair in the future reduces the social commitment to make the built environment more accessible for everyone, it would be detrimental to the development of a more hospitable environment, "designed for all".

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Model as a Measurement Tool:

Using this dynamic model, the adequacy of the available supports should be able to be measured. Measure the surface area of the triangles in a setting where performance levels are optimal, then compare the measurements in other environments ­ if the numbers for a person with a disability have decreased in a larger percentage than anyone else's numbers in a similar environment, there is probably something insufficient in the support system. Professional or peer consultation may be needed to assist an individual to determine how to bring the numbers up to par, by augmenting the quantity/quality (length of side) of one or more of the three major supports, and maintaining balance among them.

In situations where the environment itself is more supportive, (for example, curb cuts and ramps are available, telephones at airports have volume controls, buses and trains are accessible) fewer supports will be needed in the individual's specialized support system. Most of the support system will be in the generic realm, and easy to take for granted.

I have not yet found a useful way to describe the characteristics of the environment within this model. There are experts working on the environmental aspects of ICIDH-2, and I am hoping we can frame environmental ideas into a similar set of basic assumptions as the triangle used to describe the individual's support system. Because the environment/society is such a critical context, it would be counterproductive to try to measure support systems without being able to frame the measurements against environmental/societal variables.

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Design for Individual Solutions & the Resource Gap:

Since very few people will have all their unique needs met by the elements within the larger triangle, every individual with or without a disability, can probably identify a specialized small triangle, embedded within the larger generic triangle. Some represent relatively large or cohesive groups, which makes niche marketing to women, children, rock climbers, etc feasible. The small specialized triangle is an area that may need to be highly individualized, based on a set of functional requirements that are usually outside the range of the population as a whole. If you have enough money, you can get your specialized needs catered to today, with products uniquely customized to you.

Computer assisted design and computer assisted manufacturing (CAD-CAM), combined with e-commerce and easy interactive online access by producers to a diverse range of customers, is already making highly specialized niche marketing possible and profitable. Levi will sell you blue jeans customized to your body. Shape sensing technologies can produce custom footwear. The real issue here is the gap between the haves and have nots, and questions related to resource allocation of public/social funds. Even with costs approaching affordability, in areas where subsidy from public resources is needed, disability related technology generally does not have the same competitive market forces at play, as other emerging niche markets, e.g. sports equipment designed specifically for women. A September 1999 letter to the editor of the British Medical Journal, describes "the gradual loss of visual aids to help people with diabetes to inject or monitor themselves". As an American, I take this to mean that the number of products provided through the health system and equipment schemes in the UK is being reduced. From a US perspective, there is no shortage of products to address the needs of a person with diabetic who has low vision. Products are readily available for purchase in the US, if people who need the devices want to buy them. There is little expectation in the US, that a medical or social system will actually provide any or all of the needed equipment. While it might be appalling to a European audience, that people with disabilities would need to purchase the devices they need, it is a fact of life in the US. While we work state by state to improve reimbursement for technology needed by citizens with disabilities, companies continue to produce specialized products because they see a market for them. The competitive marketplace in the US has produced an incredible array of innovative products for people with disabilities.

The relationship of market forces and social forces, raises a set of questions beyond the scope of this paper. Products which have built-in universal design features will increase the number of usable mass market products available for purchase to the general public, including people with disabilities. But will it also increase the number of devices available to people with disabilities who could benefit from them, if the consumer's expectation is that products will solely be provided through health care schemes?

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Universal Design: Individuals in Broader Participatory Context:

The embedding of functional ability supports within a framework of human accomplishment supports is often overlooked in the traditional disability services systems. Technology which incorporates universal design principles almost always appears in the larger triangle, and fades into the background. (However that should not mean that specialized disability related products should not strive to include the principles of universal design ­ which are rooted in the principles of good design -- there is no reason why specialized disability technology should not incorporate good design.)

Universal design, for as basic and simple as it is, is also radical. It is a strong statement that supportive technology can and should be pervasive in one's life, that not all tools need to be "special", if they are designed for universal usability. Universal design is so important as a concept because it forces us to remember the big triangle we all live in, and put disability into the Human Accomplishment context where it belongs. Increased inclusion of universal design within mainstream consumer products will change the shapes (relationships of specialized support services) of both large and small triangles. There may be the same amount of support needed overall, but with increased availability of consumer products which incorporate universal design features, appropriate supports will be increasingly available in the larger generic tools area ( the larger human accomplishment triangle); and the smaller specialized triangle may actually shrink in many environments. Universal designed technology will influence strategies, cooperation, personal assistance services, and adaptive strategies too, as community participation of individuals with disabilities becomes more transparent -- access taken for granted, built in supports transparently in place, all without advance preparation and planning.

Universal design has enormous potential as a tool for bridging the gap between professionals and consumers. However, it is not a panacea. There is still going to be a need for individualized disability oriented services and devices. As the more simple problems are better addressed by generic products, specialized disability technology, and the professionals who work with it, will be challenged to address increasingly complex interventions, and may need higher skill levels, more training and experience in working with complex and customized technology systems. Part of the role of today's practitioners and researchers, is to work with consumers and industry to find better mechanisms for incorporating universal design into mass market products. At the same time, professionals will need to improve their skills at choosing and using the most appropriate mix of commercially available and customized technology that increase choice and participation in all environments.

Technology specialization should be focused on who is using the technology, and what are they trying to accomplish with it. Which technology (mass market, or specific to a disability niche market) is used shouldn't matter, just so long as it gets the job done effectively and efficiently. Admittedly, this approach will present a real challenge for policymakers and administrators in identifying which technology can be reimbursed from public funds and which can be included on "approved lists". Much more functional categorization will be needed ­ for example, if it meets "x" criteria, it will be covered. In the US we actually have a law guiding the major health care funding agency, which states that the equipment must be able to withstand repeated use, and be primarily and customarily used to serve a medical purpose, and generally is not useful to an individual in the absence of an illness or injury and is appropriate for use in the home. No mass market universally designed product will ever meet those criteria! We need to change the resource allocation criteria, which at the moment appears carved in stone. In order to do that, we need to understand disability related supports in context, and participation as the appropriate outcome measure.

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Bridging the Gap: Developing a Collaborative Approach to Advocacy:

It is essential that professionals and user groups coordinate advocacy efforts. Recognition of the dynamic relationship between elements of a support system and the relationship to the environment will allow us to objectively discuss mutually effective strategies for social and political change that will help and not hinder any individual develop an effective support system. For example, without an agreed upon concept of the nature of support systems and the role and interplay of their components, advocacy efforts for personal assistance services (PAS) and assistive technology (AT) will continue to work at cross purposes. It is extremely dangerous and destructive to position PAS and AT against each other as competing resources, rather than as complementary components of a support system. Technology is increasingly being promoted as a less expensive substitution for personal assistance services, and used to justify, for example, provision of environmental control systems. There is the appealing argument of an increase in autonomy and independence achieved if a person can for example, use an automatic leg bag opener rather than asking a person to do the chore. But who helps the individual put the device on, and who empties the leg bag on the day the automatic device is broken or needs cleaning or replacement? People, technology and skills must all be considered, even in these simple technologies.

In the US, policy is not looking at the relationship and connectedness of PAS and AT. It is moving in the direction of encouraging absolute either/or alternatives: either technology or a person, not a combination, not the most appropriate at any given time or place -- just pick, either the device or the person, but rarely both. If technologists continue to polarize the argument, in an attempt to gain needed support for technology, professionals will again be working at cross purposes to the important agendas of user groups trying to develop more consistent and broad based public support for personal assistance services.

Issues of personal choice, privacy, and control take on a whole new dimension within the context of tele-applications in home care. Tele-robotics and tele-monitoring (e.g. smart toilets) involve some of the most private personal care functions. It is difficult to imagine how telecommunications alone can be used as a means for reducing the need for personal assistance. It may be seductive to go along with the idea of simply substituting technology for people, as short sighted as that may be. But that approach is certainly not compatible with concepts such as individual choice, autonomy, and having control over one's life. The issues are complex, and user groups should be part of the discussions from the first stages of R&D. Direct involvement by end-users from the early stages needed:

(1) to reduce the potential of negative "unintended consequences";
(2) to develop sufficient knowledge of the technologies so an appropriate policy strategy can be developed in tandem with product development to ensure availability when the emerging technologies are ready to be marketed; and
(3) to ensure that professionals' training incorporates skill in using, and training others to use, future technologies, as well as addressing professionals' fear that they may be replaced by smart technologies.

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Universal Design: More than Disability Access:

Universal design can bring widespread availability, increased choices, reasonable prices, and maybe even good aesthetics, to the products needed by individuals with disabilities; while at the same time addressing the design needs of women, children, and others in the general public who do not ergonomically match the 20 year old soldiers who were measured to create the current anthropometric databases. Incorporating universal access principles into product design will influence not only specialized disability related services, but also mainstream services. The general public is likely to benefit more by universal design, than the disability community. But isn't that the point, and the message: the disability community is a part of the general public, access is part of "design for all".

For the most part, universal design has placed most of its emphasis on big things: public buildings, private homes, accessible space. Good individualized product design has been the "exceptional child", meriting award recognition and unique exhibits with clever names like "Unlimited by Design". Attention to personal products, products used by and paid for by individuals, has increased for many reasons, including the baby boomers' demographics of aging, recognition of a potential untapped market, disability consumer awareness and heightened expectations. In the United States telecommunications access considerations have added considerable additional momentum, and broadened the notion of universal design beyond its architectural roots. With this expansion, all the other orphan areas related to universal design will finally have a conceptually unifying home. The emerging question should be "If universal design means both architecture and telecommunications, what else fits here?Coalition building is essential to developing unified market pull forces, rational reimbursement policies, and affordable related services. The question of potential or perceived rivalry between universal design and specialized technology approaches is emerging in response to increasing recognition of the capacity for well designed products to address an entire range of needs at the individual level.

However, as we look toward market forces and demographic pressures to improve product design, it is important to remember the limit of market forces. Buhler, in his February 1999 report to the European Commission "Ensuring Access for All: The Role of Telecommunications Systems for Elderly and those with Special Needs" points out that "universal design has elements of both market and social forces". It has been obvious in the U.S., that the "built environment": buildings, transportation systems, etc, do not respond to the same market forces, that mass market products do. The general public, with or without disabilities, is not making the decisions on the design of buildings, sidewalks, transportation systems; i.e. we are not the market force for universally designed buildings and buses. It is tempting to believe that market forces can by themselves produce an increase in universal design. However, the US experience has been that societal decisions and broader legislative mandates are also needed. The initial stages of market demand have been created in the US through federal law. The driving force behind most of this legislation has been disability user groups. Professionals have collaborated, but the initiative has been from the consumer community. Disability leadership has produced some remarkable legislation, e.g. 1990 TV decoder legislation mandates that TV's sold in the US must include the captioning decoder chip. (It has been puzzling to me why other countries have not been able to build on the reduction in price of the chip made possible by US markets ­ few TVs sold in the US are manufactured in the US. Do the differences in PAL and NTSC formats affect the chips, which have now dropped to a cost per unit of less than U.S. $0.50? If the format does not influence the chips, and all TVs shipped to the US have chips, why couldn't the TVs shipped to the EU also include them.) But of course the bigger issue here, is the need for integrated supports. Captioning chips built into TV will produce no benefit at all, if captions are not available for broadcast & reception. In the US, sponsorship of the captions is usually broadcast at the beginning of program. It may be corporate goodwill, but it is also an intriguing advertising opportunity for commercial sponsors.

The role and power of disability user group's advocacy for accessible communications is particularly remarkable. I find it amazing, that in the US, we now have in place legal requirements for accessibility (albeit at different levels of development) in all three areas of communications technology convergence. When the first access requirements were put into place, the concept of "convergence" hadn't even been invented! (Note: convergence is often described through its metaphors: telecommunications: telephone; information: computer; entertainment: television). But because consumers lead these initiatives, based on actual needs in their everyday lives, they targeted the major developments in communications technology as they were unfolding.

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Reframing the Resource Allocation Question:

Tension between specialized technology and universal design may result from thinly veiled issues of resource allocation. The question, explicit or implicit, turns on where resources should be placed to get the best results. The answer should never be framed as an "either/or" argument, pitting universal design against assistive technology: e.g. if you incorporate universal design into the products then people will never need specialized products/assistive technology. While this may be true for some people, it is not universally true. But forget the answer, it's the wrong question. The question needs to balance interactively both universal design and assistive technology solutions for individuals, as I hope I have shown with the embedded triangles for support system elements.

The cost shifting arguments that were so effective in the US related to the accessible design of buildings, have large potential for harm when applied at the individual's product level. This type of justification for support will inevitably lead only to a realignment of what "special needs" means, redrawing the line of what is special and thereby separate, and what meets the new definition of "normal". Linear "either/or" arguments are inherently no-win scenarios, and violate the most basic underlying principles of universal design: design for al,. Further, these arguments divide people who would be more productive working collaboratively together.

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Bridging the Gap: Recognizing and Respecting Parallel Perspectives:

Professionals may be viewing a support system for a person with a disability, very differently than the way the individual actually see and uses his/her own system. Except for individuals with newly acquired disabilities, who are in an acute care hospital setting, most people with disabilities have developed their own support systems. They are often strongly oriented toward peers for support and information, something the Independent Living Movement has reinforced. Professionals seem to forget that people who are living with chronic conditions have developed successful coping strategies. When clinicians see a person with a disability, all they sometimes listen to are the current problems, completely ignoring the extensive resource base the individual has developed. They neither recognize or try to incorporate into treatment plans, the acquired strengths and skills gained from living with a disability. Professionally recommended interventions may fail, when all the environments, roles, and situations a person with a disability experiences are not factored in.

Having worked in both the traditional system, and in an independent living center, I have had the opportunity to participate in both worlds. The approaches used by consumers, to develop, enhance, and share their skills, tools, and cooperative strategies, do not seem to be recognized nor well understood by most professionals. If we are serious about reducing costs in disability service systems, we will find ways to build upon the vast array of successful independent living strategies developed and refined by people with disabilities. If we are serious about being better clinicians and researchers, we will find ways to learn from consumers about what really works (and what doesn't), as well as what changes are needed. If we are serious about building collaborative frameworks, we will find ways to collaborate that are based on the new disability paradigms, and which recognize and respect the expertise on both sides.

Paper prepared for delivery at the Association for the Advancement of Assistive Technology in Europe - AAATE - conference, Dusseldorf, Germany, November 1-4, 1999. 

Support in part comes from US Dept of Education, grant #H133B970017.

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Disability in Context: Reframing the Way We Think about Disability

Level of functioning	Characteristics	ICIDH categories	ICIDH-2 categories	Negative aspects	Focus of intervention	Traditional model	Emerging paradigm
Body: (molecule, cell, tissue, organ, organism)	Body function/ body structure	Impairment	Impairment	Impairment	Body parts/ body systems	Fix and/or adjust	Improve the interface/ interaction between individuals and all the environments in which they choose to participate
Person	Person's daily activities	Disability	Activity	Activity limitation	Individual's support system	Create isolated, single-purpose supports
Society	Involvement in the situation	Handicap	Participation	Participation restriction	Environment (built, social, cultural, communication)	Fix and/or retrofit

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CHARACTERISTICS OF OLD AND NEW PARADIGMS: (Enders, 1999)

Traditional Model	Static	One time or time-limited interventions	No context	Passive recipients	Top-down Decisionmaking	Measured by Inputs
Emerging Ecologic Framework	Dynamic	Ongoing	Environmental context	Active participants	Individual choice involved	Measured by Outcomes

Disability Policy:

Symbol	Policies Driving Intervention &  $$$	Policy Reorientation Needed
	Medical (a.k.a. "health" policy)	Health & Wellness Policy
	Rehabilitation/Habilitation Policies: e.g. Rehab Act, Developmental Disabilities Act,  (Individuals with Disabilities Education Act - IDEA - is a right, but acts like a service; raises the issue of the right to services, e.g. the right to health care or technology)	Disability issues integrated into mainstream service and support system agenda; while maintaining ability of an individual to access specific individualized support when needed; welfare to work initiatives, etc Universal design (It is difficult to legislate community social values: without IDEA, many children would not be integrated into regular classrooms)
	Civil Rights: e.g. ADA (Americans with Disabilities Act)  Access to Public Goods (e.g. the public airwaves: TV Decoder Act, Telecom Act sec 255; Access to Government produced info: sec 508; roads- buses, planes	- Civil Rights - Access to Public Goods & Services - Universal design - Public Health - Community Development - Citizen (Enders, 1999)

For further discussion, please contact the author:

Alexandra Enders, OTR/L, ATP
The University of Montana Rural Institute, 52 Corbin Hall
Missoula, MT, 59812 USA
406.243.2655
send email

Ms Enders is past president of RESNA, Rehabilitation Engineering and Assistive Technology Society of North America