Technology and Differently Abled People


Isaac
Bodil Jönsson February 28, 1994

Orientation
Idelogical and Historical Background
Current Conditions in Caregiving
The Isaac Project
Possible Effects
Ethics
What Now?

This chapter is about a technological development and research project that is so future oriented that it really should not be possible to carry it out today. But we are doing it any way and we are doing it at a rapid pace. That is why I feel it is necessary to include the date in the chapter heading.

Orientation

Isaac User

What shall I do now?

A mentally retarded Isaac user has a personal digital assistant consisting of an individually programmed pen-based computer called Newton. There is a built-in digital still camera as well as a GPS (Global Positioning System) satellite navagation receiver, a cellular phone channel for conversations and one for computer communications. The handheld computer's touch screen has clear, simple pictures and symbols. A phone call can be made with Isaac (Named after Isaac Newton) by just touching a face on the screen. The GPS receiver helps a person find out where he is (if this security feature is not desired, the user can turn it off by using a privacy button). The user can take pictures with Isaac's digital camera. It serves to document the day and to photograph places and things the user is unsure of. These pictures are then sent to the support centre with such questions as: "Is this the chemist shop?" or "Is this a packet of flour or sugar?"

This is what it will look like (see picture below). All the functions that the user needs will be found in the handheld unit. The rest (electronics, telephone, battery, GPS antenna and wires) will be in the shoulder bag and its strap. All together it weighs 1.5 kilos. There is room for identification, a bus card and keys in the bag's outer pocket. The first users will have bags made out of the material and in the colours they wish - so that the bag will be something personal, a treasured possession.

The personal electronic assistant has cordless connections with a powerful computer system at a support centre shared by all in the group home. Thus, Lisa whom you see in the centre of the next picture knows all the Isaac users. These are just some examples of the possible ways of using Isaac.

Isaac in use in 
six different situations

Isaac in use in six different situations. It works as an independent unit and in cordless connection with the support centre.



Ideological and Historical Background

Since Isaac is an extremely high-level technological system with myriad possibilities, it may be that all the attention will be focused on the technological innovations themselves. It is fascinating to think that something that is (almost) technologically possible today (and that will actually be realised for the first time through the Isaac project) was completely impossible less than a year ago.

But the Isaac project has many other crucial assumptions on its side. These are so new, fast-growing and fragile that it is important for the project that they be analysed.

In our culture today, people with mental retardation are seen as having the right to their own lives and their own identities. How firmly established this outlook is in 1994 can vary from person to person and is, in reality, interpreted in different ways. These differences are easier to understand when one realises how relatively new this concept is.

The road form the 1944 law on education and care of "the educable mentally deficient" to the present Law of Support and Services for the Developmentally Disabled (LSS) that is now in effect (January 1, l994) has been neither conflict free, systematic nor predictable. In the middle of the 40s, it concerned "ridding the elementary schools of the mentally lazy". The county councils were assigned the responsibility. The law only addressed the county councils' responsibilities, ie, nothing was mentioned of the child's rights or compulsory schooling. Nor was the obligation for the education and care of the trainable children taken up in this law.

During the next ten years there was a major shift as the result of, in part, intensive study and investigation. It did not go as far as to talk about the rights of people with mental retardation, but more about society's expanding responsibilities. So, by 1954 adults as well as children were entitled to care and education and the concept "mental deficiency" was replaced with "mental retardation".

The 1967 law resulted in a sweeping change because it was based on the idea of "social welfare of the mentally retarded". The term "social welfare" was introduced as a new and broader concept including educational, care, housing and recreational programmes. From this new approach grew the directives for the l977 study of "certain types of care for the handicapped", the law of 1985 and the l989 investigation based on the vision of "a society for all".

As this is being written the LSS law has just gone into effect. The responses to the disability investigation have been collated (December 1993) and the primary responsibility for the welfare and care programmes is being shifted from the county councils to the municipalities. In other words, much progress has been made since that day 50 years ago when the county councils "liberated" the regular school system from the "mentally weak".

So what has this got to do with Isaac? Well, in l944 the very idea of a system that would allow mentally retarded people a greater degree of independence and security was impossible. This was not due to the science fiction nature of Issac's technology. It was the result of the forbidden notion, conscious or unconscious, that a person with mental retardation should have the right or opportunity to move around freely in the community, to work, earn money, shop, etc.

The Isaac idea is also a deviation in the social and cultural climate in which the LSS law was born. It is not altogether impossible (such projects do exist) but it is highly unlikely because it means that retarded people are given a technological advantage over the elite in society and the business community. The mentally retarded people who use Isaac will be the first in the world to have access to just the kind of competency-raising and compensatory technology that they need more than others. This is in stark contrast to what usually happens: the best competency-raising and attractive technology is reserved for those who already have everything. One principle taken for granted is especially true in the beginning of any technological development process: "those that have shall receive" It is so obvious, yet only a few are aware of it.

Isaac can have as great an impact on people with retardation and brain damage as the electric wheelchair did in its time for people with physical disabilities. The first models of Isaac will cost considerably more that the 70,000-100,000 SKr (£6,000-9,000) that a Permobil costs today. But the increase in users from our original 10 to perhaps 100 or more will result in costs coming down to the 100,000 SKr. level and after that even lower.

There is another point, though, in which the electric wheel chair comparison does not hold. Among those who criticised the idea of the physically disabled getting wheelchairs in the 60s, there was not a one who wanted to have one for their own use. With Isaac it is the opposite - the technology that mentally retarded users have access to in Lund in l994 is so attractive that multinational corporate directors would gladly have it in their attaché cases. Such equipment, however, is not available to them. Isaac is a pioneer project in which, for once, the rule "those that have shall receive" does not apply. Instead, those that are most in need of the technology will be the first to receive it.

The independence that Isaac can foster corresponds to the more independent living arrangements that resulted when the institutions were broken down into group homes and individual flats. Today there are very few who want to move back into the big institutions. The same can happen with Isaac. It can constitute such a substantial step towards both increased individualisation and socialisation that perhaps no one will want or be able to think of life without it in a few years. In that way Isaac can also be an important link in discussions of values as we approach the 21st century.

Current Conditions in Caregiving

Since the end of the 60s, the big specialised hospitals and residential homes have been closed and replaced by new forms of care. This has resulted in a less restrictive life style in group homes in which up to five people live.

The number of employees working in the group homes varies depending on the support needs of the residents. Since more people with severe retardation have been moved into group homes, it is common that the homes are staffed around the clock. Often only one or two people are at work at the same time, making it difficult to get support or encouragement from co-workers. Instead it is the interaction with the residents and their progress that is the most important feedback the staff receive.

The staff's primary function is to support people with intellectual disabilities to achieve a life of dignity in the company of others. The effect of the LSS law's enactment has been to place more emphasis on individual considerations in this process. However, this important objective shall be achieved without increasing staff. Such an increase could actually constitute a direct threat to the programme's intentions, since the group living arrangements are fully considered to be the homes of the individuals. With too many staff members there at the same time, one runs the risk of turning the home into a workplace or institution. This intrusion into the individual's home environment is a dilemma for many caregivers.

It is a delicate task to have responsibility for the care recipients on the one hand, while not exercising too much control on the other. If, for example, a taxi drops a person off at the wrong place, and he is left standing there for many hours, it is not the staff's fault. But for the caregiver involved in his work, such an incident can be very disturbing and a constant worry. Unfortunately, there are an abundance of such incidents resulting from lack of communication.

Because the organisation is regulated by law, the caregiving staff have a strong sense of responsibility. The LSS law, which emphasises the individual care receiver and her rights to develop, increases rather than decreases goal conflicts and problems for the personnel in prioritising the different aspects of their work efforts. If a person with an intellectual disability wants to go to the cinema but is unable to get there and back on his own, someone must accompany him; otherwise his liberty to go to the cinema is a chimera. In this and many other situations, however, a staff member is needed for only one particular, individual step. An already strained work situation ends up containing much unnecessary dead time, which by itself is frustrating.

Traditionally, work with mentally retarded people has been only marginally influenced by technological developments in society, trade and industry. Against that background, the Isaac project is a giant step. This means that in the future, part of the staff's work (when this technology is available) will resemble more that of a flight controller's than what they have usually done.

The goal of using Isaac as well as its direct implications for daily living do nothing more than increase the opportunities for personal integrity and individual freedom and make it possible for the staff to live up to the spirit of LSS.

The Isaac Project

The Isaac project will continue through March 1995. The Malmö County Council and CERTEC are collaborating on this project and it is financed in equal parts by the County Council and the Swedish Working Life Fund. It has been carried out in consultation with the county attorney's office according to the current legislation.

The technological development portion of the project is under the direction of Lars Philipson, professor of computer technology at Lund's Institute of Technology. By April of l994, this phase of the project had already resulted in a demonstration version with a limited number of functions. The next step will be to further develop the demo version ino a prototype that will be tailored to the prospective field-test locations (two neighbourhood group homes for the mentally retarded in Lund and possibly the Orup Rehabilitation Clinic for people with brain damage). By early autumn the individual Isaac users (max.15) and three support centres will have their equipment so that the field testing can begin.

While the technological development has been progressing, work has been going on with the prospective field-test locations, users, involved personnel, relatives, experts, and others who will use, test and evaluate Isaac along with different educational efforts. This is under the direction of Bodil Jönsson, physicist and director of CERTEC.

Isaac is a pioneer project, the purpose of which is to gain experience from genuinely new opportunities. The whole project and some individual aspects are so radically different from anything done before that no one can dare to predict anything else than that we will be surprised. A given condition is that the project, neither technologically nor content-wise, will stretch over a long period. This would probably not even be desirable.

Isaac

A specially produced bag with an open pocket for Isaac. In the pocket with the zip (which can be locked) is all that is needed for Isaac to work, but which the user never needs to bother about. The handheld unit takes care of all the functions (lying on the table above).

What you see here as a stand-in for the handheld unit is Sharp's standard model of Newton on which is written "Isaac". In the final Isaac version all the commands will be specified and the scale will be different.

Pictures of Isaac in the development phase.

Start by looking at the picture in the upper-right-hand corner. There is a continuous CERTEC clock with symbolic pictograms added on to the Isaac screen. "Now" is always at the top. Compared with the standard shape of Newton, the shell has an added bulge to the right so that there is room for a digital camera. You can see just how small it is by looking at the gleam from the camera lens in the upper-left-hand corner picture.

The two bottom pictures are of the back side of Isaac and show the difference between it and that of Newton. An ergonomically correct finger grip has been added. (The original Newton's back was totally flat). In addition a telephone has been built in, ie, a speaker meant to be held to the ear and a microphone for the mouth.

Possible Effects

The choice of words in this title is intentional. What follows should be seen as more of a description of our intentions, of the possible effects, than what we can promise today. With each passing day, the schedule forces us to make new decisions and the platform for the actual pioneer project shrinks. But that does not mean that what follows and much, much more will not be reality soon. We will be able to accomplish a good portion of it during the ongoing Isaac project.

Possibilities for the mentally retarded user.

The increase freedom and independence will be visible in many different ways. One of the standard functions is the individual planning calendar. Answers to the most commonly asked questions can automatically be found there without even having to ask, for example:

- Who is working tonight?
- Who is working tomorrow morning?
- What are we going to eat?
- What are we going to do this weekend?
- What are we doing this evening?

The staff or relatives take care of entering the information. The difficulties in operating the system are at about the level of a bank clerk's, so that the routine work can be easily done. One has to know the system well, though, to deal with the more complicated situations.

For the user with mental retardation, the Isaac interface will be so easy to use and as individualised as possible so that Isaac will serve a function:

In leisure time - to expand one's range of activities, move around more freely, go to the cinema alone, visit others, take a picture of the young man at the dance and save it, put together a photo album, etc.

At home - to get help and inspiration from Isaac in deciding the menu. Isaac can be used to make a shopping list on one's own by going around to the fridge, the pantry, bathroom, etc, to check on what one needs to buy. Then the shopping list can be printed out in the order that the items are found in the shop, of course.

At the day centre or at work - Isaac can facilitate getting to work and communication with the group home or relatives. It can also become a powerful work aid, expanding the areas one can work in, and by better individualising the job assignments. The potential for using Isaac as a support in long or routine work sequences is unlimited.

Isaac makes it possible to work with monthly and daily diaries in a way that has never been done before. The user takes pictures herself. The series of pictures on the next page shows how a young woman with mental retardation could tell about her day for her parents by saying the following:

Monday, January 17, 1994

8.01 am I started a job at the Sparta Restaurant in Lund.
9.17 am Can you see that those are my sandals?
I'm the one baking the buns.
10.08 am He works in the kitchen at the restaurant.
1.22 pm My lunch
5.11 pm I have bought a new house lamp.
5.20 pm My contact person.
6.18 pm The most fun I had today was when we went swimming.
7.37 pm The staff act so silly sometimes.



Possible uses by personnel and relatives

The interaction among the staff and between the staff and relatives will be made considerably easier by means of Isaac (the pictures on the last page were used to communicate directly what would otherwise have gone through someone else).

But the most important is, of course, the interaction between the intellectually disabled Isaac user and her relatives, friends and staff members. The staff can go home, change jobs, cut the ties. But the parent-child relationship or that between a friend or sibling is not as easily broken off. They are lifelong, more or less intensive, and interwoven so that it is impossible to think them away. That is why I want to, in part through this project, try to include the relative relationships, even though we will primarily be working with personnel (due to practical considerations). Fears are often expressed that people with mental retardation are restricted in their independence by overprotective relatives. Seldom do you hear that this is really about being able to handle the conflict between the desire to belong, on the one hand, and the desire for independence on the other. I am confident our independent Isaac users will develop a gradually increasing ability to handle this conflict on their own.

Some examples of changes that Isaac makes possible:

Increased richness and variety

The opportunity to individualise grows exponentially - the way one person uses Isaac is not necessarily like any others. The effect of learning, increased security and varying needs for freedom mean that the use of the Isaac system can be expected to quickly change. In other words, it can result in more variability in the day-to-day lives of the staff and relatives as well.

Fewer repetitions

Relatives and personnel will not have to do so much repeating since Isaac will always have the answers to the most common questions readily available. It is easy for the staff to get the same message out to everyone - as a picture, a spoken or printed text. Isaac enables communication without being physically present and so is not as obtrusive. This is a new way for the staff to deal with the constant conflict between taking responsibility and avoiding invasion of privacy.

More effective communication among the staff and with relatives

The new opportunities for documentation are an important part. The users will not only be able to make coloured copies of their photographs for their monthly scrap books, etc. The documentation of individual events will also be readily available for everyone involved (the individuals themselves, different staff members and relatives), and much of the time that is used today for conveying and exchanging information can be saved.

An aid in diagnosing and individualising

It will be easier to find out what each client is capable of - on his own, with a little or a lot of support. In this way the staff are better able to carry out individual development programmes.

Increased competency

One of the effects of the low technological level in caregiving has been that the status, involvement and motivation of the personnel has not been furnished with new innovating elements. This can have a negative effect on staff members today who ask themselves questions such as: Do I have anything to offer? What competitive advantage do I have in today's tough job market?

Broader recruiting

Such an atmosphere negatively influences opportunities for successful recruiting. The generation of young people that the caregiving programmes will recruit from here on are, on the average, considerably more comfortable with technology and are more technologically oriented than the last generation.

Without new viewpoints and new organisational forms, it will be difficult to safeguard the basic values in caregiving and to recruit creative and involved teachers, caregiving personnel and directors for group homes. This is especially true for young men whose interest in technology is still greater than that of young women. Today's personnel consists primarily of women.

Ethics

In spite of the classification "personal assistant", Isaac may cause some to think along the lines of criminal care and electronic handcuffs. Will someone else knowing where you are all the time be considered an invasion of privacy?

The alternative

Isaac's main purpose is to make a more independent life possible. The mentally retarded Isaac user will be able to do things that he cannot do otherwise. Just as the corporate director views his cellular phone as more of a benefit than an extra burden so will the Isaac user, in all probability, feel privileged. She will have increased security in everyday routines, in time and space, in support for the continual difficulties and conflicts in personal finances. Issac can also increase the richness and variety, for example, by offering suggestions for "What shall I do now?" or "What can we have for dinner next week?"

One of the alternatives to Isaac is to constantly have another person on one's heels. This is a considerably greater invasion of privacy than the voluntary usage (cf. below) of the Isaac communication system. Another alternative is to continue to forgo those activities that cannot be done on one's own and in which the staff are too busy to help. The scope of individual activities will be limited to and remain at today's level - you simply will not be able to go to the cinema if you cannot do it on you own and if no one has time to accompany you.

Voluntary contact

Unlike electronic handcuffs, Isaac will have an off-switch for the GPS-receiver. This is a privacy button that will both save on battery ware and tear and allow the user to decide when he wants to be in contact. Learning to use that switch will be one of the first training steps. A light will show when the GSP-receiver is on.

What Now?

The project's termination date is April 1, l995. At this point in time the final report of the system and the experiences gained will be presented. Then the first major evaluation of the concept, that started to unfold on October 15, l993 can be carried out.

The contact person at CERTEC for the Isaac Project is Arne Svensk, +46 46 222 46 94. Please send any concrete suggestions you have to:

Isaac, CERTEC, LTH, Box 118, 221 00 Lund, Sweden. Fax +46 46 222 4431


Preface
Table of Contents
1. Introduction
2. Natural Intelligence
3. Artificial Intelligence
4. Isaac