Reflection!

What’s quite interesting about the lectures of the Universal Design course is that they introduce us to new discussions regarding impairments and disabilities. We don’t often think who sets the range of normality, or what normal should be defined as, but this course shows us how our community has many stigmas and stereotypes about people with disabilities. Moreover, something that makes me really interested in this course is how we have discussions about typical designs that are used to help disabled people to overcome their difficulties. It is quite sad to realize how many of these designs are not well built to properly suit the disabled. The Wheelchair that is capable of going up the stairs for instance made everyone in the class startled with how unprofessional the design of such a wheelchair can be.

There are numerous aspects that need to be considered when a person is designing for the disabled, it’s not only restricted to the technology or to the function of the design only. This course helps us realize that we must always consider the user in the design process as he or she is going to be the one using the system frequently. In addition, I personally like how this course incites us to design for the disabled by being in their shoes, as this is most probably the most adequate way that can give us an idea of where to start, and how to engender something that would make a difference in the user’s life, making it easier, better and more functional.

Another thing I liked about the course is that it helps us understand impairments beyond what the eyes can see. For example, I never knew that Parkinson’s disease has numerous effects on the person’s life. I always thought that it’s an issue in the nervous system that causes the affected person to shiver all the time. Yet now, I have an idea of what people with Parkinson have to go through everyday.

The problem of stigmatization of disabilities is also emphasized in one of the lectures, and this is something quite vital to consider in such a course. In addition to the problems that the person affected by some certain disability has to go through, that person has to also face difficulties in being accepted. In my point of view, I found the lecture that talks about stigmatization quite intriguing, as it makes us recognize the effect of the society on the affected individual. This lecture also focuses on how the design is crucial, as mentioned in the slide “Good design of supportive tools can avoid stigmatization” and I find this completely true, as design plays a vital role when it comes to stigmatization, or how others perceive the disabled person.

When it comes to research, there are many ethical issues that need to be considered. And the lecture about ethical considerations is very helpful due to its brief indication of  how we can commit ourselves to always be ethical in our research. It may be challenging to ensure ethical thinking in all aspects of Disability Research and Universal Design, but it is necessary to work according to a certain approach that would result in the optimum situation. One approach that can be used is the utilitarian approach that helps us decide which choice is right depending on maximum overall happiness, so this takes into consideration all the stakeholders of any research. Regarding making researches about the disabled, It is very necessary to take precautions to avoid the invasion of the affected people’s privacy and integrity. Unethical behavior such as mistreating or misjudging those who are involved in the research process can have a detrimental effect on the people involved, therefore it is highly advised to always treat others well as disability research can be a sensitive issue. It is also important to carefully select the informants, and we need to avoid invading their privacy whilst doing the research. Imagine if someone keeps watching you in order to understand your specific case, wouldn’t it be awkward and uncomfortable for you? That’s why we always need to put ourselves in the shoes of the informant instead of directly choosing which method is easier.

In conclusion, what’s quite unique about the lectures of this course is that it makes you think of things from a different point of view, and this might be the best way to make us feel that we’re doing the right thing for the disabled. As Universal Design is not only restricted to whether the machine works as intended, numerous other factors need to be regarded.

Problems with ethics

Ethical decision making in research with disabled people requires a good understanding of how to treat special privacy and integrity issues. Making such ethical decisions for people with cognitive impairments can be a tricky thing especially if we cannot ask them directly on their consent. Additionally, there are certain risks attached to these circumstances.

Imagine researchers have found a promising new drug therapy that enables people with severe cognitive impairment to live a life like you and me. In order to judge the effect of this new drug researchers need to test this drug on human beings. How can we make ethical decisions in this case as the people who might benefit from this drug therapy cannot be asked directly on their consent?

On the one hand, it might be unethical to just test the drug on human beings as we do not know about possible side effects. The drug might cause further damage which is not what the patients want to have. Furthermore, how can we know if these people really need our help? Our “normality” or “reality” might be worse than what these people perceive as “normal” at the moment.

On the other hand, how can we know if people might want to take the risk and try this therapy? Maybe they do not want to live their life as it is at the moment.

There is no right or wrong in this case. At the end of the day we have to find a measurement to decide what is really ethical in such cases. Therefore, we need to judge all options and evaluate which of those can be considered ethical according to our measurements.

 

Assignment 2 – Blind glasses

Have you ever wondered how it would be not being able to see, not being able to know weather the people around you are staring at you because you are holding something in your hand that helps you find your way in this world? Why people are laughing at you because you because you are walking into something.

People with bad or no eyesight have different kinds of stigmatization in their lives. There are different kinds of degrees of vision impairment and depending on the level of the eye damage there are different stigmatizations. For example, using sunglasses inside, wearing a eye patch, holding a white cane, not knowing where you are, walking with a guide dog. These different stigmatizations can be reduced with the help of technology.

People nowadays are demanding more and more technical solutions that can be consumed for pleasure, lots of companies see this as a potential income and are spending lots of money developing new technological advanced devices, what if there was a way to use some of that and create something useful for visual impaired.

Phones are capable of using their camera to scan an image and get information from them, QR code scanning, for example. Image analysis are getting better and better and the technology is getting smaller and smaller. It is not possible to handle all the data that the eyes take in, but it is possible to extract the most important information. A person with visual impairment could need an extra pair of eyes.

One possible solution could be to use a small camera, connected to a very small computer, which is placed close to the eyes.  The camera could scan the area in front of the person and provide necessary information that could be used to orientate through the environment. For example, makes a fast beeping sound when the distance to something gets shorter. GPS for navigation. But the most interesting would be image scanning. A blind person walks up to a sign and scans it; the scan contains a lot of information that the visual impaired person could get presented to himself via sound. These images could help other people as well, tourists could scan images in front of buildings and get information about the building in their own language.  Signs, that describe the environment, could be put up everywhere, on bathroom doors, in shops, outside and even in traffic.

Google has developed something called Google glass. Google glass is a pair of glasses that has a camera, GPS, led screen and a small computer. It is still in development, but it is going to be released on the market to any person that would like a pair. What this means is that the stigmatization disappears because many people are going to wear these glasses, like a lot of people having smartphones nowadays.

This solution is not possible today, but could be, in a near future. Companies and developers need to understand that this is something that can be done and should spend more money to develop alternative solutions.

Assignment 2 – Stigmatization

For this assignment I have decided to use CP (cerebral palsy) as the impairment type I am going to discuss. The reason for this is that CP is one of the impairment types that is easily stigmatized or misunderstood.

Cerebral palsy is an umbrella term for a group of conditions that affects the muscular control of humans in a negative way. These conditions has their origin in brain damage that occurred before the brain was fully developed, during the foetal period, birth or the first two years of the child’s life. This is the most common reason for paralysis in children and adolescences.

Imagine how extremely frustrating it must be to be trapped in your own body. You know exactly what’s going on and what you want to do, but the body just doesn’t do what you tell it. To then see people around you look at you in a strange way and maybe even treat you like you have the mind of a small child, when you could in fact be the brightest person in the room but no one can see it.

Worth noting in the small paragraph of information above is that there is nowhere to be read that this is an impairment type that affects the intelligence of a person, which I believe many people think. The reason for this is, according to me, that the people with CP speak differently and can sometimes be hard to understand. So people naturally think that this person is not very smart, he or she can’t even speak properly, as if that was the number one sign of intelligence in humans. I think most of us have encountered people who speak perfectly but are still considered to be unintelligent, some politicians for example or the contestants on the TV-show ‘Are you smarter than a fifth grader?’. Do we handle the more and more common language barrier in the same way? This person doesn’t speak my language as good as me, I bet they’re stupid. Of course some people do this, but most of us can accept the language barrier and listen beyond the poor language skills to possibly find out that we are speaking to a very intelligent person. By being ignorant and assume the person is stupid, we might miss out on some really rewarding conversations.

Just take Stephen Hawking as an example, even though he is suffering from ALS (Amyotrophic lateral sclerosis) as oppose to CP. He is one of the most intelligent people in the world and he can’t speak at all, at least not with his mouth. Instead he speaks using a special computer, developed by Intel. You can read about this computer at his website http://www.hawking.org.uk/the-computer.html . Basically there is a software keyboard on the screen of this computer, where a cursor automatically scans across the keyboard by row or by column. To select a character Stephen moves his cheek, which is monitored by an infrared switch on his glasses.

The reason why not everyone who has trouble moving their body and speaking is using these kinds of devices is most likely because they are very expensive. Not everyone is lucky enough to be sponsored by Intel. I believe that if people afflicted with CP could have these computers, then people would perceive them to be just as intelligent as they really are.

The computer itself doesn’t seem to be special in any way, just the software. So a good solution could be that the software would be open source and available for everyone free of charge. Of course the device needed to do the selecting will probably have to be different from individual to individual, but this shouldn’t be too costly either since it for some people could be as simple as a button.

Even though this solution won’t completely eradicate all the currently existing stigmatization of the impairment, it will at least lessen it severely. Humans rely very heavily on communication, so by improving people’s ability to communicate a lot of misunderstandings will never occur at all.

The use of CP as an insult for stupidity, which is or at least was a pretty common occurrence in Sweden, additionally fuels the misconception that people with CP are less intelligent. How did this even happen? The first person who used this word as an insult must have had to explain to the person being insulted that CP means stupid. Then the other person just accepts that without even looking it up before probably just moving on and using CP as an insult to another person. And so the chain reaction has started. Luckily I have not heard this insult since I was a little kid and I really hope it has died out. People today are ignorant enough as it is.

Designing for non-stigmatization

To design for non-stigmatization is really hard, mostly because it’s the society that creates the stigmatization, not the stigmatized individual. And as we all know it isn’t the easiest thing to change the society.

One impairment that isn’t visible but still leads to stigmatization is deafness. One example where design could help is in shopping malls, airports and other places where information is communicated with the customers through speakers. In these places, screens could be added that are visible throughout the premises that show the messages spoken in the speakers. This would also be good to reach people wearing headphones, listening to music or other stuff.

Speech recognition is another tool that could be used to aid those with hearing impairment, given that that technology is accurate enough. This would at least simplify the communication in one direction in public places like the grocery store or the bus. I imagine small screens in front of, for example, the bus driver, printing what he or she is saying. How the deaf person should communicate back in a non-stigmatizing way is a problem to solve though.

Text-based communication is an area that is the same for people with hearing impairments and people with fully functional hearing, so using technologies and devices that supports this type of communication definitely broadens the “normality” area.

Trapped at home

I have actual been in a wheelchair, it was two years ago I had manage to get cracks in the heel bone on both of my feet and while they where healing I was not allowed to have any pressure on them except from the weight of each leg. It took ten weeks for my heels to heal. I was only in the wheelchair for a relative short limited period of time, but ten weeks in a wheelchair was more then enough.

I lived in a small dorm room 18m³ on the fourth floor with no elevator in the building. My bathroom was small and without a shower and there where absolutely no space to fit a wheelchair in that room or in the common shower room. This building was not wheelchair friendly and neither where any of my friends buildings.

I did not have a car and none of my friends had a car. To be able to go to school I had to take a taxi to school, luckily my insurance covered that but the insurance only covered the school trips. To get down to the taxi I walked on my knees up and down the stairs using hockey shin-guards and the taxi driver carried the wheelchair. Every time I left or entered my home I needed someone to carry the wheelchair for me. When I got home from school I was stuck at my floor until the next day when I went to school. Not to be able to leave home by my self to by food, visit friends or just to get outside on a beautiful day was the hardest part of being in a wheelchair for me.

Compared to my home Polacksbacken and Ångström is a lot better adapted for wheelchairs with elevators to al the floors. Most of the entrances are at the surface level. There is one big bathroom on each floor where you are able to move inside the bathroom with the wheelchair. It is very few doorsteps and they are often smooth and it is a smooth surface on the floor inside the buildings.

But there are some things that could be a lot better. The asphalt outside Polacksbacken is rough especially when you are on your way back to your friends with food from Rullan in your lap. In the lecture rooms the ones with fixed rows, there is no place for a wheelchair with a table except from the table meant for the lecturer and if the wheelchair is in the lane no one can pass. In all of the bigger lecture rooms there is always stairs in the lanes so when in a wheelchair you have to sit on the front row without a table to write on. The emergency plan for people in a wheelchair is terrible, don’t use the elevator in case of an emergency. Fifteen minutes to get from Polacksbacken building one, to Ångström is a challenge with the mysterious ways of deciding witch floor to stop at the elevators on Polacksbaken have.

When I was in a wheelchair it was possible to do the necessary things but many options became unavailable. I was able to go outside but not always when I wanted to, I could go to the lectures but I could not sit where I wanted to. I was able to be with my friends but not on the same conditions, they always hade to come to my place. I was not able to contribute as much as my friends and the often had to help me.

My area where I felt that no matter what happens I could make it home safe became very small. Because moving just a couple of hundred meters is hard work in a wheelchair and slow compared to running. How can I defend my self if I’m attacked, I cannot flee fast.

The social conventions where changed because I could not express body language the way I used to. Maybe people find it hard to know how to behave when someone is in a wheelchair is because people automatically read each other body languages to know how to behave. When a person is in a wheelchair that language is different and therefore some people do not know how to behave. 

All buildings should have a standardization that makes it possible to use a wheelchair in that building. The entrance, all the floors and all the rooms should be at available for people in wheelchair and it should be possible to exit trough every emergency exit whit a wheelchair. So that people in wheelchair can visit their friends on the same conditions as every one else.

Design a modern wheelchair that looks good and have a better function outside, goes faster and handles usual terrain better.  This could be the answer.

Ethical Considerations

After thinking about it, it seems that if you put ethical considerations in disability research and universal design a little bit more abstract, it boils down to: Conduct a high quality research and take the HCI and usability process precisely. Nothing more to consider. It is that easy. Disability research and universal design is nothing special. Really? Yes, but doing good research and getting Usability right is not that easy in the first place, I fear.

But if it is done right, than it basically means:

• Ethical thinking is part of every good research
• Discovering, understanding and respecting the individual needs of every user is part of every good HCI process

To be fair, these steps — which are not easy on their own anyway — get probably harder if the users are more “exceptional” than the ones you normally deal with. Talking to blind people about their needs is difficult? So is talking to pilots of firefighting planes in rural Africa about their needs. The same with an “exceptional” topic. Thinking about universal design is hard? So is to think about a computer system in a nuclear power plant.

I believe the most important aspects are to make always sure that you see the user as a person, meet them with respect, and have awareness for the inimitabilities of the situation. This will hopefully create the need of constant reflection of your own behaviour and work.

Being Deaf — Minimize stigmatization and Broaden the “normality” area

A deaf person or a person with limited hearing capabilities has the advantage over, for example, a person in a wheelchair that their disability is not that obvious in the first glance. Still people with limited hearing capabilities can be exposed to different forms of stigmatization. Some possible situations or aspects where the handicap is noticeable are:

• Not reacting to audio signals
• Wearing eye-catching hearing aid devices
• Not reacting if they get spoken to
• Using hand gestures for sign language
• Unclear voice and articulation
• Problems to communicate in noisy environments

Assuming that the other senses are working properly for these people and that they are not multiple disabled, other modalities could be used to even out the hearing problems or impossibility. I believe specially visual or tactile feedback could help here.

These aids could help non-disabled persons as well. The following list collects some potential use cases where non-auditive support could improve the life, even if normally no limited hearing capabilities exist:

• In noisy environments, e.g. in crowded and busy areas or rooms with bad acoustics
• In well insulated environments, for example in cars
• While wearing head phones, for example to listen to music, or while wearing thick hats or helmets

Thus the “normality” area would become broader as well, a distinction between non-disabled and disabled persons would not be needed.

To get into some more concrete design ideas, I thought about which features a smart phone — a device most people use daily and have around them during the whole day — should have. It doesn’t matter if call, low battery or text message, all notifications should use multiple modalities in general. This means the mobile should, beside making a sound, also for example vibrate have a flashing light. Combination with a smart watch, so that visual feedback is seen better, could increase the usability.

Another idea would be an app that reacts to auditive signals in a visual way and by vibrating. In a broader sense, a shift or adding of modality should work in all directions. But to stay with a concrete example, the smart phone could be trained to react to for example ringing of the land-line phone, the fire alarm, an approaching ambulance or shouting out the users name. Additional microphones, for example at a car or in a smart watch, could increase the precision. Once the app catches a signal, it could be displayed on the lock screen and show additional information. In case someone shouted your name, the app could show an arrow to point to the direction of the shouting person and also an image from the phone contacts if the person could be identified by the app.

Sketch of app screens for an app reacting to auditive signals with visual notifications.

These are only two potential ideas how adding of additional modalities could improve the life of deaf and also non-disabled people at the same time. As these design decisions increase the use for everybody, the “normality” area get broaden and stigmatization get less. Suddenly design for deaf might even be adorable for hearing people.

These examples show that if designers pay attention to disabled persons in the first place, solutions can arise which help everybody. To minimize stigmatization in a first step awareness for disabilities is needed. Only if the designer knows about the topic, they can actually create a good design, broaden the “normality” area.

Minimize Stigmatization

Who is visible disability will immediately notice such people who sit in a wheelchair but people with invisible impairment will not immediately notice such fatigue. We may have low expectations of the people who sit on wheelchair because we think he/she is unable lifting things and high expectation for the person who has fatigue because we cannot judge the invisible disability of him/her. Both conditions of disability equally frustrate to each individual.

Let say I have an invisible disability that no one knows. I do not tell because I am ashamed of it or do not want to be the one that different among my friends and got pity. I stigmatize with my condition. Then why I feel stigmatized? Nobody ever stared and said bad things to me.

Unfortunately, the media most of time influence our opinion, such as news that we read in newspaper that people with an illness “limited” to do things regarding they are not “normal”, sometime comedian on Television show using disability as a source for humor that we may don’t realize that could cause stigmatization.

However, the media also offer the source as solution to decrease stigma among people, the media has the power to educate and influence our opinion.  The media can use to spread positive messages, which help to understand about impairments that have misconceptions among people. According social psychology on discrediting psychiatric stigma, the stigmatization of every individual has a different level depend on knowledge about disability.  The people who have more information about disability are less stigmatizing than people who have less knowledge about disability.

Lastly, the media and stigmatization among people could be a solution and a problem at the same time. It is hard to expect the reaction of each individual concerning disability.

Taking another look at wheelchairs

Wheelchairs, a simple word consisting of wheel and chair.  The mental image is easily grasped.  It also allows the implication of the word to settle in quite quickly too.  A chair, for someone who sits down and a wheel, to move around.  What is simply just a mobility aid can also harbour negative connotations.  Where are wheelchairs most often found and who are their main users?  My answer is “at a hospital” and “the infirm or injured” respectively.  For a lot of people, these are the answers to the above question.  It is especially important to consider the mental image I’m trying to build here.  You have hospital orderlies wheeling people in these wheelchairs to and fro, simply because their legs are unable to take them places they need to be.  It is a norm for the hospital to have people unable to move themselves being moved around, but now, take that person who is in a wheelchair for whatever reason outside of the context of a hospital and then suddenly they are outside the norm.  It brings to question what they are doing outside of a hospital among other possible degrading thoughts.  Here the wheelchair is no longer just a mobility aid.

The problem, I believe, here is a problem of perception.  That is, when someone looks at a wheelchair user, they perceive and recognise something out of the norm and the ensuing implications.  Thus, the solution would be to prevent such a thing from happening.  There are a number of ways that can be done.  First is to shift the result of recognition such that it results in a good or positive thought or idea.  Another is to shift the perception of a wheelchair and equate it with the norm.

Admittedly the first is the easiest to do and design around.  It is in effect a trick of smoke and mirrors.  Normal wheelchairs look something like this:

This is a normal boring wheelchair.

There’s nothing wrong with this kind of wheelchair, functionally.  It is, to borrow a phrase, ‘exactly what it says on the tin’.  However as I stated, we want to distract therefore we must somehow change the design of the wheelchair.  The functionality of the concept, that of a chair with wheels, should remain the same however.  It is the physical appearance that could be designed to look appealing.  The kind of design that would make people look and think, “that is a cool wheelchair” or a more extreme, “I wish I had one of those,” rather than the same old, “it’s just a person in a wheelchair.”  Thus the wheelchair bound would now actually stand out in a positive way.  Designing aesthetically pleasing wheelchairs is not something new either.  It exists in real life just as it does in fiction, just look up Charles Xavier, he’s got some pretty cool looking ones throughout his life.  Of course it doesn’t actually work if the target is simply not distracted.

Thus, the second solution, integrating wheelchairs in to the norm.  Easier said that done.  First we must consider what differentiates wheelchairs from the norm.  Specifically, it is the aid that a wheelchair requires so that it may go from point A to point B.  Things like gaps in height or entrances to a building.  A wheelchair would require an incline plane or an elevator.  For people who do not use wheelchairs, we usually use stairs.  It follows then that to normalise wheelchairs, we get rid of stairs!  If we used slopes and ramps instead, that would at least close the gap between wheelchair users and others.  The other major architectural change that could possibly be effected is probably the door.  While revolving doors are great at conserving the heating bill, the fact still remains that they are rarely suited for wheelchairs.  Automatic sliding doors work just fine.  They can even be built in an airlock configuration if energy conservation was a big deal.  This is of course, does not take in to account factors such as fire safety and other such practical considerations but it remains worthy of consideration.

As someone who would have been wheelchair bound due to an ankle injury, I think I would have appreciated such things.  Wheelchairs should be cool and I don’t have to suffer the vagaries of stuffy French theatre architects.  Not that I’m eager to break a leg for a play again or anything.