I am currently giving a course on Universal Design and Evaluation at Uppsala University. This is the first time I am giving this course, and it is really exciting for me. I am especially happy to see the faces of my students in this course, as they listen to my lectures and enter the discussions. I feel understood, even more, many times it feels as if we think the same way.

During one of my lectures on Stimatization, I had a sudden insight, which I think is very important. We keep talking about inclusive design, universal design and design for all, and this is of course very important. Better design of artifacts and environments are crucial and there is a lot of work to do in these fields.

However, when we talked about Stigmatization as a general issue, it becomes equally important to think about the societal view on deviation(°). We may design things well enough, and we may make architectural solutions that are ingenious, but if we can’t make this into a general change of attitude among people it will all be in vain, people will still stare at a wheel chair, people will still feel uncertain when they see a Hoover (white) cane.

Stigmatization will not be removed, only by Design (although I am certain that a good Design can do a great contribution as well), but also by changing the view on Normality. I think that Normality is the main key to Acceptance, and Acceptance in turn will be a major key for the removal of Stigmatization. I will get back to this in a later Blog entry. But for now, I think it is enough to start the mind thinking about how we can normalize the deviation. And make “them” (the deviant) into “us”.

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(°) The use of the word “deviation” here is not intended to be used in derogatory sense. It just asserts that there IS an apparent difference which is caused by an impairment or other categorizing personal property, which can be the cause of people staring or avoiding encounters.

This is one of my favourite indications of bad design. You complain about something that doesn’t work, and then immediately some technical wizard comes up and says, “Oh, that is so simple! You only have to… ” and then follows a short or long sentence of computer gibberish.

Mind you, I often complain about things that I know how to handle or problem I know the solution to. I don’t even want to know how to solve it, I just want to point to that the problem exists. But when someone goes into the “you-only-have-to”-mode, then I have the definite proof of that the thing could have been better designed, or easier to use. You shouldn’t only have to “ooogle the burkyfizer” in order to use something (didn’t you understand my computereze?).

Recently I wrote on facebook about the problem with having different good passwords on all your web sites. That is difficult for all who have bad memory, at least (maybe people with a normal memory capacity can remember several “ir%T2frtdi334_” passwords, I don’t know, I can’t). Immediately there was a comment that noted that it is not difficult at all. You only have to (!) get a friendly (sic!) computer that helps you remember all the different passwords and then lock it with a “super password”.

A good solution! That you may use several different computers, or even public ones, is not a problem, of course. Or if your friendly computer gets a hard disk crash, and forgets all your passwords at once, that could never happen. Actually, when you don’t have your friendly computer with you, then you are completely free of the problem of logging in, because you have definitely not memorized the password, once you have confided your friendly computer with all your different passwords.

The most solid solution is still to have post-it notes on your desktop, computer screen, or on the archive drawers (the only thing people use them for today seem to be to hold the post-it notes with passwords).

As long as we have to use passwords to log in rather than other solutions based on something that is simple to remember, we have a usage problem, that will keep people frustrated.

PS. The person who suggested a “friendly” computer? A computer scientist, of course. What else?

What is it like, having an impairment? What is it like to sit in a wheelchair? It looks so easy when you see someone in a wheel chair doing tricks and turns, and it looks so easy when a blind person reads on a Braille-keyboard. But what is it like? Is it even possible to understand what it is like to be dependent on a tool, when we can just change the situation by standing up, or opening the eyes? My immediate answer is quite clearly, no.

We can get some ideas by trying the tools and by reasoning about the situations. That is what we are doing in an ongoing class on Universal Design at Uppsala University, but it quickly becomes clear that it is difficult to understand the complete situation.

One student is trying to use a wheel chair on cobble stones. (coypyright: LarsOe)

Prior to the lecture, I used an electric wheel chair in the corridors at the department, just to test the conditions and what it felt like. And, of course, I felt ridiculous, sitting there driving myself through the corridors, seeing people giving me free way with a strange look in their eyes. Maybe it was because I was using a 170 kg heavy chair in the narrow corridors, or maybe it was something else… Clearly, life is different once you sit down in one of these things. Just to make the point, having skidded some 2 kilometers in an electric wheel chair has not given me ANY understanding of what it is really like. However, it has given me a lot of thoughts… and I will try to put them down in this blog, once I have pondered through them.

And, to answer the question in the beginning of today’s blog: I don’t think it is possible to understand unless you are or have been in that situation yourself… I think that the best we can do is to try to catch glimpses by working close to the people, and then attempt to apply these insights properly.

The dangerous thought is “I know what it is like!”.

I just thought I would copy this item from my (mainly) Swedish blog. If you have read it before, then it might be good to read it again, and I have added some afterthoughts in the end…

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I suffer from a burnout syndrome and this has been a large part of my life since May 2008. I have decided to be personal in this blog, but I think it is necessary to be frank and honest with this. I have had problems being frank and honest to myself during this time, and there are many hours in therapy behind my own understanding of what has happened.

Then…

I was giving a course at the university in the middle of May, 2008. The course was new, and the subject one I had not taught before. At mid-lecture I just felt that I had to fold my laptop and walk away. I had never experienced anything like that before. I was literally shaking when I left the lectuere theater, and I could not stay at work. The next week I contacted the doctor, and was sent home from work. As soon as this happened I started sleeping. I slept for about a week, more than 18 hours a day. I didn’t think that you could sleep that much.

Now…

A year has passed, and I am now back to work at 75%. What has happened since? Well, I can cope with the work I am doing, although I have realized that I have to compensate. The old person that I was before May, last year has changed, and the changes need to be accounted for. A constant tiredness, bad memory, difficulties to focus, difficulties to find words and names, and a sensitivity to stress are new properties that I need to learn how to handle.

I am a person who is almost allergic to planning, and one of the difficult things I have found out recently is that planning and making lists is going to be a new part of my life. Without lists, memory support (a.k.a. calendar) and writing down what I do, things will not work.

Thought

It is very easy to fall into the trap of viewing yourself as being almost chronically ill. I was very ill in the beginning. I could not do very many things, and just passing the building where I have my office gave me a panic attack. However, this has passed. I have been at the office, I have talked to my colleagues, etc. I have even started to work, although not with teaching.

Many people who suffer the same thing report a long time of recovery, lasting over years. If I try to think about my own situation, I even start to wonder whether you really recover, or if you rather learn how to manage the situation. And even if you slowly recover, it might be better to accept the situation, and learn to cope. If you live with a condition for several years, that condition becomes you, and not a defect within you. As soon as you start accepting that there are things that you need to compensate for, then it becomes your new identity, and that identity is not faulty, but different.

But is this just not a way to fool yourself? Is it better to incorporate the “defects” in your person, than to think that you could do better? I think it is, because when you have accepted who you are, then you will not constantly be disappointed. As long as you compare yourself with your “old” self, you will constantly think that “I used to be able to do this” and that is a depressing thought. If you accept who you are, any progress will be instead be a positive effect.

I still struggle with my acceptance, but I think that if I can manage to change perspective, this will be a very large help forward.

Afterthought…

Now it is 2011, and three and a half years have passed since it all started. Have I recovered? Well, not entirely. I manage to work full time, but I still have to be very careful with stress. I cannot keep more than one or two balls in the air at the same time, and I still don’t have a memory I can trust. I have started to challenge myself a bit more, which I think is good.

On the whole, I feel lucky, though. I have found a way to cope with the new self, and I have started to accept that the old person is not there anymore. Finding strategies to avoid or overcome all things that have happened in the last days has become part of my life. Essentially, I have now accepted a new life, which in the long run may be richer than the old, in that I have found new values that will complement the old ones. And I have become very sensitive to when other people run the risk of falling in the same trap as I did.

Hopefully this can be of use to someone else. I will write more on this topic later in this blog too.

ABC 80 Basic and 8 bits...

The technological development is very rapid, and seems to speed up more and more. We still have computers on our desks, and they look about the same as they did more than 30 years ago. Of course there are differences and the computer of the 1980:s is not the same thing as the computer today, especially not with the introduction of smartphones and tablets. One question is of course why the progress hasn’t been greater. But from the point of view of Human-computer interaction (HCI) the issue becomes more complex. We have to decide when something is a computer or not. Which screens are computers and which are not? Is interacting with the menu on a TV the same thing as interacting with a computer? Or is Human-TV interaction something different from HCI? I would myself say: “No it isn’t!” With some emphasis, even.

The central topics of HCI are relatively well defined, but in the periferi, the definitions quickly becomes more fuzzy. There is even an ongoing debate on the scope of HCI, and how we should teach the topic to various groups of professionals. Human-computer interaction is not easy to define in itself, since it can be regarded as a supportive research (and education) field. I quote a recent facebook entry from my friend and HCI-philosopher, professor Masaaki Kuroso from Tokyo:

What is the core, the central zone, of HCI? Is there something useful and effective? Or, even a question, is there anything? HCI is a field formed from the surrounding edge; computer science, material science, mechanical engineering, cognitive psychology, ergonomics, design and social sciences. They came into this frontier from outside but didn’t form the core. The only reason they ran into the central area is a belief that there must be something that links the artifact(computer) and the human being. In other words, the handshaking could be said to be the core of the HCI.

Essentially, the meeting of the artifact and the human is the central core of Human-X interaction with any entity “X”. As professor Kuroso wrote, maybe we should even start to forget the “C” in HCI, and replace it with an “A” (for artifact). This would make many things much more transparent and straightforward. A “handshake” between a human and something else poses essentially the same problem area regardless of what that other something is. Understanding, ergonomic aspects, logical work flow, control, safety, trust and satisfaction are all properties of an “handshake interface” and an artifact, whether it is a physical computer (HCI) or the physical control of an electric wheel-chair or an aeroplane (HAI). We could even consider interaction with virtual artifacts within this term.

What is there to be gained from this change? On the surface it is only a lexical change, but the implications are quite large.

• By looking at artifacts, we may, e.g., losen ourselves from the idea of computer users, which, to start with, is a large gain. The “user”, or as sometimes more specifically named “computer user”, is traditionally an unspecified, but very specific creature, who is more or less experienced in one or more skill dimensions. By considering the “user” we do not look at the artifact as a work tool, but as an implementation of the tool within a strange virtual environment. This is something we do not do with a “hammer user” or even a “carpenter’s toolkit user”. We just consider the best way to design and use a hammer for a specific task.
• By looking at artifacts we will also be able to look at more diverse design spaces. Now we tend to separate design of virtual artifacts from physical design of tools. There is also a tendency to mimic physical tools and controls in computerized settings, which is not always a good idea. By looking at artifacts as a general term, we don’t separate the two design spaces and minimize the risk of copying the wrong properties and features.
• There is an increasing involvement of computers in many physical tools, which causes strange borders within both research, education and application. Is a robot a computer, or is it far enough from being a computer that it warrants a completely different research direction (human-robot interaction). This may lead to barriers between researchers, meaning that valuable knowledge may disappear between the fields of research.

There are quite likely many other arguments to add, but these are in my opinion enough to make it arguable to form a more general term, such as “HAI” (Human-Artifact interaction).

My father is from Germany, and came to Sweden as a young man, where he met my mother (of which I am very happy, of course). In the family legend the following story is often told, and is part of the oral tradition. It relates to a time where language made more difference than today, and when it was not uncommon that people only knew Swedish. My mother’s father had a house keeper, who was a very determined woman, and she went to her best to arrange a perfect Swedish dinner according to what could be expected at that time, when my father was going to come on his first visit. She spoke no English (nor German) and my father had just started learning the odd language called Swedish.

The dinner was very pleasant and tasty, and when the house keeper afterwards asked him what he thought about the food, he thought it would be a great gesture to try to answer her in person (rather than having it translated by my mother). So he searched his vocabulary for suitable words, and in the end he finally presented her with his ruling in Swedish, which translates to something like this:

“Oh, it was quite edible”.

No need to say that the house keeper felt insulted by this comment. And of course that was just a matter of language difficulty. But this family legend has come to my mind recently, in a completely different manner, when I have started to think about how we use other words that end in “bility”. Within HCI we use the term “usability” to denote the quality of an interface, and “accessibility” to denote that it is possible to use the artefact by people with special needs. Well, why was the house keeper insulted by my father’s word? Because “edible” often means possible to eat (but no more). And if we think about the words above, “usable” means possible to use and “accessible” means possible to access.

But this is not a quality marker. We often say that “usability” has to be evaluated as a comparison. Just saying that this or that interface is “usable” is considered to be a useless statement. But of course it means that it is possible to use the artefact for a specific purpose. But possible to use is not equivalent to being a good tool. Wooden shoes can be used to hammer a nail into a soft wall, so they are usable for that purpose. But why aren’t carpenters equipped with wooden shoes? Because they are not GOOD for the purpose. They are good enough to be used in some emergency situation, but they are not GOOD.

This goes with lots of words in our field, and one problem that I can see is that we would settle for the “-able” and “-bility” parts of those words. We don’t want things that are usable, we want good products! We don’t want accessible buildings (through the back door), we want buildings that make us feel good entering them, regardless of our features.

So what should we do? Essentially, maybe we need to overlook the terminology, and what it implies, so that we start making products that are not merely usable, accessible (or edible), but good to use, and easy and comfortable to access (and wonderfully tasty to eat)! Maybe it is time to scrap the word “usability” and its siblings in the dustbin, and try to invent words that really say what we want to achive.

Often it is said that it is OK as soon as it is good enough. But is it really. In Swedish we have the word “lagom“, which means neither too little nor too much. It even permeates our culture where people are not expected to boast about themselves. However, in terms of design, especially universal design, good enough neither is, nor should be good enough.

Inclusive supportive tool...

A technical artefact that works, and one that does its job in a usable way, is good enough, according to many. However, what does usable mean? It essentially means that it is possible to use the artefact. A single wooden shoe is usable for the purpose of hammering in a nail in a wall. A professional (!) hand drill is perfectly unusable if you want to drill a hole in a concrete wall (unless you have eons of time, of course). So the concept of “usable” does not really say anything about how good a tool is in itself. It is always a comparative term. So even if an object is usable, the interesting fact is whether it is more usable than a competing object.

Professor Håkan Eftring coined the superb term “useworthiness” as an important property of technology, meaning that an artifact needs not only be usable, but it also needs to be worth using in relation to the effort spent (as seen from the individual point of view). If, for example, an object requires more effort to use, than the gained advantage is worth, it will most likely not be used (unless it is the only option available). However, even an object that is useworthy, and in a sense “good enough” may not be well designed or good. It may still have design flaws, but it will still be usable if there is no alternative, or of all alternatives are worse. A useworthy tool is of course more usable than a tool that is not worthy of use, but it could also be only “good enough” in order to be usable.

So, why is good enough not good enough? If it is usable, then we can use it, or…? Well, if things were that simple we might just stay with a lot of things that work, but just barely. But a thing that works, and still leaves the user feeling vulnerable, unsafe, or ill at ease, is not good enough, even if it allows the person using it to do things that are valuable. If you need to show yourself as vulnerable, less valued, disabled or even displayed, this might be enough to make you feel stigmatized. Many times, I feel that this is unnecessary, since there are many solutions that are not just good enough, but really, really good. Inclusion is not enough, but we need inclusion without distinction…

I heard on the radio today a person who commented the obvious that people grow more different with age, rather than more similar. This statement was made in connection with senior apartments, and the services provided in those places. The living for senior citizens is of course different in different countries, but the statement evoked some thoughts in a more general way.

In disability research as well as in research on elderly people, there is a tendency to talk about “the needs” of a disabled or elderly person as if they all have the same needs. I have been at lectures and presentations where the presenter repeatedly talks about “Elderly people are so and so…”, and similar about people with impairments.

The truth is of course, that elderly and disabled people are not so and so (this shouldn’t even need to be stated). We are all individuals, also when we get older or have an impairment of sorts. By talking about groups of people we are simplifying the problem vastly. And in simplifying to groups of people we run the risk of missing big issues in the research of supportive and facilitating technology.

So how should we approach the issue about design for elderly and impaired people without falling into the trap of generalizing? Well, the suggestion is to do some reverse engineering on that statement. Reverse engineering is in software development to unravel the thoughts behind a solution (a program).

When we talk about the special needs for a certain group, we generalize on the needs. This means that we make an average measure, a statistical construction of what a group of people have in common. Now, all members of this group do not have the same characteristics. But, again in the statistical sense, some needs are more common than others. Therefore, a reverse engineering of the “elderly” or “disabled” groups should render us a certain set of characteristics, in a sense in the same way as the ICF defines different kinds of impairments. So when we talk about design for elderly, we should rather talk about designing for the characteristics that often, but not always follow from being old or having a certain impairment.

The art of design for impaired and elderly people, then becomes the art of knowing about the set of characteristics that need support for certain groups of people (but not applying to all). So for senior people we might need to know how to design for bad hearing, for bad vision, and bad memory (just to give a few examples) but without assuming that that is the “group signature”. There are senior people with perfect vision and hearing, and a superb memory.

There are people with severe physical impairments that manage to go scuba diving and skiing, whereas some people do not. Impairment and age are not general properties, but individual features that influence different persons differently.

So the Art of Design for Elderly and Disabled is not really “the Art of Design for Elderly and Disabled” but rather “the Art of Seeing what an Impairment Implies for the Individual and Knowing the Characteristic Needs of Elderly and Impaired”.

So, does this make a difference? Yes, it does! A big one at that… If we talk about the needs of elderly people, we degrade them as a group. We impose a self image as less potent, and in need of help and support. If we talk about the needs and how they can be remedied, it is probably easier for a person to accept that this needs to be helped, than if it becomes a “sign” of growing (too) old (to count). Thus, for the individual, the shift in perspective becomes important, and for the researcher/practitioner it becomes a more focused view on the design need.

We have seen the fights to stop apartheid in South Africa, something that has been supported by many all over the world. To treat different groups of people differently is in most cases considered to be “not OK”. In a civilized world all people should be regarded and treated as individuals and given equal rights.

However, even if the apartheid is officially looked down upon, it is there, and for a person who has an impairment of some kind, this becomes evident ever so often. It is never spelled out, but left to discover by the individual from case to case.

This is of course very clever, since an official policy of discrimination will be criticized by people soon enough, whereas conditions that you are aware of only when they apply to you are more likely to remain unseen (since they hope that the individual is not strong enough to take action, and besides, who cares about the experience of someone who is already looked down upon?).

The apartheid I am talking about is thus the difference in attitude and encountering that a person meets when he or she is in a situation of any kind. It might be just the way someone talks to you (would you like to have people talk v-e-r-y c-l-e-a-r-l-y to you just because you have sprained an ancle and can’t use your legs?) or even how they don’t talk to you (“what kind of disease does he have, since he can’t walk” asked to the personal assistance. Or it might be how people look at you because you walk hand in hand with a person who is NOT in a wheel chair (their eyes spelling “how can THEY love each other, and can they have sex?”).

But that is still the individual preconceptions that appear in peoples minds. It is explainable, if not really excusable. Very difficult to understand is instead how companies can do the same thing in their businesses.

I wrote earlier about how the Swedish train company SJ refused to accept “wheel chairs” when a person wanted to book a ticket on the train. That is a typical event of hidden apartheid.

A similar but even more sophisticated example is by a travel company that offers holiday trips to nice vacation facilities. When asked, they offered transfer by taxi from the airport to the hotel for 3000 SEK. If you wanted the bus transfer, it would cost you over 5000 SEK. If you are in a wheel chair, that is. For the rest of the population the cost is 165 SEK (and 65 for young people).

So, a person who is in a wheel chair has to manage the transfer by him- or herself, if it should stand a chance to be manageable. Is this fair? Is it reasonable? I wouldn’t think so. Of course, there is an extra cost involved somewhere. But the big deal is that this could be avoided with some planning.

I can hear the talk at the travel company:

-“Should we arrange extra facilities in the bus so that we can take wheel chairs?”
-“No, if you look at the statistics, we have no people in wheel chairs on these trips”
-“But if we get one?”
-“Well, then we have to arrange for a special transfer, but that is expensive.”

A year later?

-“Hmm, there has been no increase in the number of people in wheel chairs traveling here”.
-“So, you see, it would have been unnecessary to arrange for this in the standard bus, there is no need”

If anyone thought this was a good reasoning, then read again. It might be worth considering if the passengers in wheel chairs are missing because they don’t want to travel, or simply because the special arrangement costs to much for the individual.

Anyway, the company in question also suggested that the potential customer asked some other company instead. Well, I will do that! I don’t want to favour a company that manages a business with apartheid rules. And I will tell my friends too…

Indeed, I will write a letter to the company tomorrow, and if they can’t give me a good enough answer (or if they refuse to answer) I will mention the company here and in my lectures as a good example of bad attitude towards people with impairments. I only tell about my experiences and what I heard, so I should be alright with that.

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This article is mirrored in a different wording on my Swedish blog.

Some things are difficult to accept. This is something I have noticed quite clearly during the last six months or so. To be formally healthy (according to the board of health insurance) is not the same thing as being cured and healthy in reality. After a burned out syndrome, this is true to a very high degree. You limp around on your broken soul and mind. You try to run as well as you can on the brain cells that are working, in order to manage to work, and still have some time left over to live. And as with all injuries, the risk is large that you will hurt yourself again if you try too much on an old wound.

Currently I am limping around on a mental leg, that has just been released from the plaster cast that has been surrounding it for some time. This leg is weak, and cannot support too much. But the limping doesn’t show. Nobody can see or realize how much I can handle before it gets too much. Not even myself, sometimes. This in turn also means that it becomes difficult for others to really understand how my world works (or not). It is hard for other people to understand (and maybe also to accept) that I need to have my naps during work time, or that I have to lie down and sleep for an hour after work every day.

It is difficult to understand that I really don’t remember some things. I used to, but I can’t any more. And you can’t see that I cannot remember, or that I am dead tired. Thus, I feel very lazy and even stupid when I lie down for a mental rest. I tend to call it my “meditation” in order to justify it, also for myself. And it sounds better than “I am sleeping”. But as hard as it might be for others to realize and accept this situation, just as hard or more is it for me. I don’t realize my limits until I have already passed them. I have not learned to predict the situations that I cannot handle, and I haven’t learned how to use the tools I need in order to live a somewhat normal life again. I have not accepted my impairment yet, even though I can see the disabling effect from it.

Currently, there is just something that is wrong, and of course, that cannot be me who is that way. In order to keep going, I have to accept, not only that this is a mental impairment (doesn’t that sound bad?), but also that this condition will be a central part of my life for a long time, if not the rest of my life. I am not the same person as the one who ran into the famous wall of stress, and crashed head first into it. I am the person I am today, and that person is difficult for me to understand. But I have started to realize that this person is someone that I have to live with for quite some time now. I can’t escape him, and he can’t leave me. Therefore I have to learn how to accept and handle all these new features, that come with this deal.

I have realized that it is difficult to handle something that you don’t accept, so now it is time to start accepting the person that I have become, and the person that I am… now! I have to accept myself. It is only after that this has happened, that others will be able to accept me as I am.