CHAPTER5

Things to Avoid

This brief chapter contains some dead-end warnings that novice AT developers may face. This is very much a personal list, but others may be found in Kings excellent book on AT design (King, 1999):

•Diagnosis and Functionality

•I Have a Theory; I Have a Cousin

•Islands of Ability

5.1DIAGNOSIS AND FUNCTIONALITY

Short Definition: Many technologists, in initial forays into the domain of AT design, focus on the diagnosis resulting in the disability rather than the actual missing/low functioning abilities. This leads to many blind alleys, and missing many design opportunities.

Longer Description: As designers, we are always looking for more information about the problem at hand, and the first offered description of a potential user is typically the diagnosis. For instance, a colleague’s father-in-law, a former tennis instructor, uses a wheelchair daily and when queried about his disability, the answer is that he suffers form Parkinson’s. Similarly, people with cognitive disabilities are often described as having Down’s syndrome, Fragile X syndrome, fetal alcohol spectrum disorder, etc., based on the etiology of the intellectual disability that they are suffering.

Ironically, terms used to describe cognitive or intellectual disabilities are subject to the “euphemism treadmill,” where whatever term is chosen for a given condition eventually becomes perceived as an insult. The terms “mental retardation” and “mentally retarded” were invented in the middle of the 20th century to replace the previous set of terms, which were deemed to have become offensive. However, these newer terms have also become seen as offensive (e.g., “You retard!”). Interestingly, these terms describe the effects of the diagnosis and, as a result, systems focus on the cause of the functional disability, rather than (a very broad) description of the problem-at-hand.

5.1.1DESIGN WITH DIAGNOSIS

Choosing to base the design requirements on a target population defined by diagnosis is, with a few exceptions, often as a result of selecting a range of functional ability that is too broad. At the same time, focusing on the diagnosis may exclude others with implicit functional needs that may prove very useful. One of the few examples of designing AT for people with cognitive disabilities using diagnosis is designing for those suffering from Autism spectrum symptoms such that this population is often fascinated with issues of control and patterning, an issue not as much at the forefront of requirements for those with intellectual disabilities that do not have this particular emotional and motivational component. In the end, using the diagnosis as a basis for (most) design of AT for IA really does not provide much leverage in the design process beside selecting a set of end-users.

Design by Functionality

By looking at functional needs the target group expands and thus, ironically, focuses the design on ameliorating the missing ability rather than on the cause of the disability. Imagine, if you will, designing wheelchairs specifically for spinal injuries, which would be different than ones used for amputees of those suffering from Parkinson’s. By looking to the function as the requirement source, the specifications for the system naturally come out. The current challenge to AT designers and policy makers is how to match up functional needs to existing and proposed functional supports. Work is being done to integrate the International Classification of Functioning, Disability and Health from the WHO (World Health Organization, 2001) with this approach but the complications from the universe of one problem (see Section 2.7) and tying together context and tasks make this a hard problem but one that may hold great benefits for both AT recommendations (i.e., matching existing AT and users needs) and design. Marcia Sheerer (Galvin and Donnell, 2002) and RESNA/ISO standards groups (RESNA, 2015) have been working on this problem. One analogy for the state of research is the emergence of object-oriented programming (Booch, 1991), which holds much promise for code reuse and moving software production from a craft, always re-creating a new wheel when a new wheel is needed, to an engineering discipline, with re-usable components (e.g., using standard screw connectors and steel components rather than forging them).

The website of Raising the Floor, a project implementing the “AccessForAll approach, based on achieving accessibility and digital inclusion through dynamically matching each individual’s unique needs and preferences with the resources, services, interfaces, or environments available. To support access for all” makes this very clear:

. . . . . that people with disabilities are one of the most heterogeneous groups and do notfit neatly into diagnostic categories; that those categories can yield misleading information; and that the diagnostic category may only be a small factor in his or her needs and preferences. 19¹⁹

5.1.2CANONICAL PAPER

Scherer, M. (2011). Assistive Technologies and Other Supports for People With Brain Impairments. Springer. (Scherer, 2011)

5.1.3AT DESIGN EXAMPLES

I have seen the diagnosis approach often in reviewing papers for journals and conferences. Experts in computer science, new to AT for IA, sometimes build systems focused on specific causes of cognitive disabilities, resulting in requirements focused on narrow groups and using only a segment of the potential population that it could be applied to for evaluation (i.e., the autism example mentioned above). Often, when the design rationale is exposed, the work that has been done in designing to the etology of the problems to be solved does not provide insights needed to specify functionality or interface requirements for the problem solution.

5.2I HAVE A THEORY; I HAVE A COUSIN

Short Definition: Motivating AT design is often solely based on personal relationship or solely on professional academic expertise. Relying only on either of these has consequences for broad AT abandonment and adoption.

Longer Description: One class of designers may approach the problem of designing AT for people with cognitive disabilities by addressing the problem’s space entirely theoretically and gaining understanding of the system needed through formal and academic studies of cognition and cognitive disability. The result is often elegant, intricate systems that often were abandoned or not even brought to market due to unfamiliarity with the complexity and environmental demands. One aspect of this is due to thefact that the distance between the experience of the designer and the end-user’s systems are often inappropriate or ineffective in real context of use. In attempting to understand the needs of the user and the task to be performed, the system designer can take one or two naive approaches: (1) he can extrapolate from his own personal experience of someone who needs support in their day-to-day life because of cognitive disability (i.e., a child, parent, or cousin) or (2) he can establish a theory. Through daily contact the designer produces a cognitive support that perfectly fits their end-user. The problem here is that since the universe of one property characterizes the solution space of this population, the system does not generalize well and can easily fail to be adopted by others. One could label these two problems “I’ve got a cousin and I’ve got a theory.”

5.2.1THEORY

Researchers can approach this perspective as generalists, like cognitive science-based linguists, and become interested in the problems of cognitive pathological states in day-to-day life. This is, to some extent, a natural progression from the earlier work on neurology which, lacking modern imaging and sensor abilities, developed models of brain function based on pathological conditions, That is to say that hypothesizing functioning cognitive activity models are based on studying people with sensory and cognitive disabilities based on physical trauma or developmental problems. The resultant AT system for support often reflects these models and, at worst, only these models. This end of this axis is also tied to the problem with designing to the diagnosis rather than the functional need.

As a result, the systems produced are often difficult to configure, use and modify as the details of the model they are based on can “float” to the surface of the user interface and may require understanding the model itself to adapt or configure (Kintsch, 2002). This is apparent in some of the high-end AAC systems designed by linguists (Kintsch, 2002). So, we have one end of the Turing tar-pit (Perlis, 1982) “in which everything is possible but nothing of interest is easy.”

5.2.2COUSIN

The other end of the axis I call “I have a cousin.” One of the sources for inspiration for the CLever projects was the Visions system. A special education policy lawyer in Denver, and his wife, a schoolteacher and former ARC director, had a developmentally disabled daughter, Stacie.²⁰ Stacie was living with the family and Bill the father was inspired (with his son) to build a system to support Stacie moving in to a condominium they purchased for her. They hired a set of programmers and produced an image and verbal prompting program to help Stacie be independent in ADLs and IADLs. This worked:

Stacie is now living in her own townhome with a roommate who does NOT have a disability, who does NOT provide support services for Stacie, and who pays rent to live with Stacie. As true roommates, they have become great friends and do many community activities, church activities, and social activities together. Even though Stacie is unable to read, write, tell time, understand money, or even verbalize all of her needs, she knows what to do and when to do it because the prompts remind her so that she can control her own life. She follows the step-by-step picture prompts to make dinner or go to the grocery store, or choose a recreational activity, etc. The Visions System has allowed Stacie to be a productive roommate instead of a dependent person with a disability (from the VISIONSYSTEM.com archive1²¹).

This program was so successful for Stacie that the family decided to make a commercial system of their success (Baesman, 1999), which they sold to the IMAGINE, a Boulder Colorado nonprofit organization providing support for people with cognitive disabilities. IMAGINE (Imagine!, 2007) had, at the time, a 2,00-person residential apartment building supporting independent living. The CLever group was invited to take an investigative visit to the facility where they had purchased a Visions system, installed it in an apartment, but later abandoned it. It turned out that it was too tailored to Stacie, and not easily or inexpensively extendable for the unique needs of other people with cognitive disabilities. Too tight a fit and based on idiosyncratic desires and needs of an individual user created too much of an obstacle to broad adoption. MAPS design was, in many ways, both inspired by, and a response to, the Visions system (Figure 5.1).

Figure 5.1: Visions system logo. From Baesman and Baesman (2007).

5.2.3CANONICAL PAPER

There really are no papers on this topic, but the best start is to start counting ratios between adopted AT and AT that is seemingly of high potential but not wide use.

5.2.4AT EXAMPLES

There are many examples of “cousin”-based design in task support besides Visions. The problem is, I think, based on both a lack of research-based understanding of the problem and too tight a focus on a single user (a seemingly appropriate response to the universe of one problem)

The examples of “theory”-based adoption/abandonment problem prone systems are often centered in AAC domain. On a tour of special education AT devices I was told stories about abandonment of complex tools to support speech (as the very complex one used by the physicist Steven Hawking, and that exact model was on a shelf with abandoned, overly complex devices), resulting in several very expensive systems in a corner of a AT storage room, abandoned due to the theoretical foundations of the system “floating” to the interface (Kintsch, 2002).

5.2.5CONCLUSIONS

What to do? If your primary motivation and background is in academia and R&D (especially focused on the technology and not the domain), then the best thing is to spend time with people that are the intended users of your system. More than that, seek out end-user groups and end-user caregiver support groups; seek out other specialists in stakeholders, such as rehabilitation professionals, family and special education application professionals. Don’t just interview them, spend time with them and look at what they are doing to accomplish what you intend to replace.

If you’re coming to AT design from a more personally motivated perspective, your child, co-worker, friend, and yes, your cousin, may be the model for the system you make. You will, if successful, end up with a very nicely tailored system that does exactly what your end-user needs. This may be a good place to start. The next step would be to talk to professionals in the field and talk about what is needed to make this functionally workable for others. Better still is to think about this at design time, but self-motivated system creators don’t have this as the primary motivation to continue, often with no intent to recoup time and money spent on it beyond the satisfaction of helping another.

5.3ISLANDS OF ABILITY

Short Definition: High-functioning AT end-users often have: (1) personally heterogeneous cognitive and physical disabilities; and (2) abilities that may widely vary over time.

Longer Description: The “universe of one” conceptualization includes the empirical finding that (1) unexpected islands of abilities exist: clients can have unexpected skills and abilities that can be leveraged to ensure a better possibility of task accomplishment; and (2) unexpected deficits of abilities exist (Figure 5.2). These anomalous deficits and abilities can be static, as in tasks that are always difficult to accomplish; or dynamic, as in stress potentiated, fatigue triggered, or even seasonal.

In the MAPS system evaluation I was observing the use of the system by a young lady with intellectual disabilities that were sufficient to bar her from employment except in simple tasks. More than that she required, and was given, a job coach to help her learn to sort used clothes on a rack at a local used household and clothing store (see Figure 2.4). The coach expected, using traditional rehabilitation teaching techniques, for it to take several months for her to master the sequences of actions required; with the MAPS system this was halved. More to the point, one day I was watching her use the system and encountered her grandmother and spent a short time talking to her about her granddaughter and passing the time (actually I was gathering family history and probing for the impact of the system in the family structure). The young lady came from a quite wealthy family and in their large home in the mountains the father has installed a home theater, something that in 2004 was quite rare (and technically complex). The grandmother told me she was having problems starting up and setting the volume and lighting in the room, when the young lady came in and explained to the grandmother how to do it while doing it for her. This the grandmother found quite remarkable. To some extent this was a generational difference—remote controls are to millennials as dial telephones were to the greatest generation. But beyond this, her facility with the controls was remarkable. This particular young lady had an operatic level singing voice, and I think one of the insights that can be gained from my work with her is that the term “idiot savant” is widely inappropriately used. The dimensions of ability that we all have differ in so many domains.

Figure 5.2: Islands of need and ability. From Cole (2006).

Experts in this domain, such as Elliot Cole, did not find this very remarkable. To have intellectual disabilities, or cognitive disabilities, is not a matter of turning a single control on cognitive abilities down. There are many facets of ability and needs that differ from person to person, and especially in people with cognitive disabilities over time. This time may be a day, a week, context dependent, and even developmental (we all grow in so many dimensions over our lifetime).

These islands, static and dynamic, appear in many narratives of people with cognitive disabilities and disabilities in general (Scherer, 1996). Having a hard day, or having a hard week, is not solely the domain of typically abled people, but the impact and ability to compensate may be diminished for those with various disabilities.

An example is the MAPS end user who held an outside non-sheltered job, took the bus to and from the job, shopped, and even had a bank account that he managed. He did his own laundry but could never (he was in his 30’s) learn how to fold and put away his own clothes. Hanging pants was particularly challenging to him. This was worked around by creating specific scripts that changed as he became slowly more proficient, however pants hanging never was collapsed in the script, so for the experimental period he never mastered unaided hanging pants on hangers: Islands of inability.

The island model sometimes works both ways. I have a friend who has been paraplegic since his early 20’s, and in the 1980’s we were part of a group of sailing enthusiasts. Because he was always quite athletic his upper body strength was remarkable, and ten of us had rented a 50’ sailing boat to go from southern Maine to Nova Scotia. We came into some rough weather on the second day of sailing and many of us went below decks while those on watch stayed in the cockpit or on deck. While below the winds and water caused the boat to move abruptly back and forth, up and down. To move from aft to forward was a bumpy zig-zag, but not for my friend—he grabbed the railing in the ceiling and moved easily and gracefully—helping me prepare the noon meal. That day we all asked him for help: Islands of ability.

Compounding the problem is that this variability may be a contextually driven. Driving while using a phone or texting are an excellent and dangerous example. Having a broken leg or arm is similar. Being intoxicated is also a case where my intellectual capacity is diminished but will not be so 12 hours later—think about airline pilots and flight rules.

5.3.1CANONICAL PAPER

Cole, E. (2013). Patient-Centered Design of Cognitive Assistive Technology for Traumatic Brain Injury Telerehabilitation. Synthesis Lectures on Assistive, Rehabilitative. (Cole, 2013).

5.3.2AT DESIGN EXAMPLES

This is an item where examples of existing AT can be provided, as much as another cautionary tale about (1) knowing deeply the target population, stakeholders, and tasks, and (2) the importance of flexibility in the system.

Designing for the minimum applicable amount of functionality may lead to boredom and abandonment; designing too high can lead to frustration and abandonment. The earlier sections of this book presented tools like personalization, design for failure, and intelligence augmentation as ways not to fall into this trap, but the most important tool is to spend time with the end-user—with lots of end users and caregivers, and AT experts.

¹⁹http://raisingthefloor.org/who-we-are/our-approach/.

²⁰I am using real names here as the Baesman family’s Vision system website also used their real names. The website is gone but the internet archive allows access to old versions of the site (https://web.archive.org/web/20050308195237/http://www.thevisionssystem.com/).

²¹https://web.archive.org/web/*/www.thevisionssystem.com/ or https://web.archive.org/web/20040204134154/http://www.thevisionssystem.com/