Assignment 3: Stigmatization and “normality”

In this post I will hypothesize how it’s possible to use design in order to 1) minimize stigmatization, and 2) broaden the “normality” area. I’ve selected wheelchair users as impairment type. As we’ve discussed during this course, (visibly) disabled people are often stigmatized, and one of the reasons for that is because they stand out. Thus, I believe that by broadening the “normality” area, disabled people can be less stigmatized. But how can this be done?

From the lectures, “stigmatization” is defined as “a process where people are discerned as different in any way, by having special needs, using special tools or requiring special solutions”, that is, not “normal”. So if a person looks “normal”, is that enough to prevent stigmatization?

Many people with a walking impairment have to use a wheelchair. As mentioned in the course, wheelchairs aren’t very aesthetically pleasing, and there aren’t many customization options. The design focus is obviously on safety only, and since their customers kind of have to buy them anyway I suppose there’s not a big need to make the wheelchairs look more attractive. Not to mention that they’re kind of bulky and unpractical in many situations, and many people pity the wheelchair users because they can’t walk. In class we’ve theorized about what if we can make wheelchairs cool, and to focus on people’s abilities rather than their disabilities. Cost is an issue because all supportive tools have to be thoroughly safety-tested, and there aren’t that many users for them either. But let’s say that this isn’t a problem. If wheelchairs looked less like an aid for moving around and more like an accessory, would that remove the stigma that exists for wheelchair users?

Well, they’d still be using a “special tool” and need “special solutions”, so probably not entirely. On the other hand, in the best case the stigma could be more positive than a negative one. In class we heard about an attempt to design an entrance for children who couldn’t take the stairs. In the end, they made the elevator look like a rocket, which made abled children want to ride with it, too. While this is very much an improvement, is there another solution for minimizing stigmatization?

During this course a classmate and I have been reading up on exoskeletons. They can be used to enhance human abilities like endurance and lifting (Zoss, Kazerooni, and Chu, 2006), for rehabilitation training (Rajesh, 2013; Veneman, Kruidhof, Hekman, Ekkelenkamp, Van Asseldonk, and van der Kooij, 2007; Mao and Agrawal, 2012; Tsagarakis and Caldwell, 2003; Nilsson, Vreede, Häglund, Kawamoto, Sankai, and Borg, 2014), and to give people the ability to walk again (Wang et al., 2015). While cost is very much an issue today (Nowogrodzki, 2015), some are of the belief or hope that in the future, everyone will wear them (Ferris, 2009; Herr, 2009). And while some models available today look really good (image 1), there’s even some research on soft exoskeletons (image 2) that can be worn under clothes if the batteries and the motors get a bit smaller and repositioned (ExtremeTech, 2014), making them invisible. Truly, were exoskeletons like those available for all wheelchair users, I believe that would minimize stigmatization. And if the day comes when everyone uses an exoskeleton, it’d surely broaden the “normality” area as well.

Image 1: HAL exoskeleton from Cyberyne

Image 2: Soft exoskeleton developed by Harvard scientists

Another, perhaps easier way to broaden the normality spectrum today, is exposure. As I’ve discussed in previous blog comments/reflections, I believe that education and having more disabled people in movies and other media would help to reduce stigmatization. However, as this isn’t about design, I’ll leave this tangent.

For a more general but more abstract way to use design, one thing I can think of is to design things so that they can be used in more ways than one. For example, most pairs of scissors are made to fit right-handed people (as the majority of people are right-handed), but there are some that are designed for left-handed people as well. Apparently there are even some pairs of scissors that are ambidextrous, meaning they work for both left- and right-handed people just as well (or bad?). While this is probably not applicable to everything and could possibly obstruct the use for some people (like perhaps the ambidextrous scissor is more difficult to use than a right-handed scissor for a right-handed person and a left-handed scissor for a left-handed person), I like this kind of thinking. Instead of having special tools for the minority of people, everyone can use the same things.

However, wheelchairs can be used by people without disabilities, but obviously they don’t use them. How can we design a wheelchair so that everyone uses them? Even if we could do it, for example by making it a status symbol, we probably wouldn’t want to. Even though it would certainly be considered “normal” to use a wheelchair if everyone uses one, it’d not be a very practical solution. Especially when so many people today lead quite sedentary lives. It’s probably better to try to design wheelchairs so that they look more like something one gets because one want to use, rather than has to.

For example, I think that some of the designs that we’ve seen during the lectures look pretty good. A segway-like wheelchair (image 3) that the user can stand up in looked rather stylish and reminded me more of a luxurious chair than a medical tool to me. As we’ve learned during this course, being looked down upon all the time can affect people’s self-esteem, so designing a wheelchair that one can stand in seems like a very good idea to me. Not to mention that this solution can probably help to prevent sores from sitting, and the disabled person might even be able to navigate in narrow areas that aren’t built to be accessible by people in wheelchairs.

Image 3: A wheelchair design by Jake Eadie

The other attempts to design a wheelchair that can raise the disabled person to standing height were a bit more flawed, as we’ve discussed in class (for example the one that balances precariously on two wheels looked unstable and risky), but at least it’s good to know that some people make an effort to minimize the stigma for wheelchair users.

In the end, I believe that the best thing we as designers can do is to use a proper design process, just like we should when not specifically designing for people with an impairment. I think the universal design process that we learned about in class summarizes a good design process for most cases: Get a good understanding of the situation, what problem is to be solved, make the needs into design requirements, think of solutions and try them out, repeat until a prototype works. As we have learned repeatedly in our Master program in human computer interaction, there’s no good substitute for real users. As mentioned in this course, it doesn’t seem likely that some of the previously mentioned wheelchair designs were ever tested by real users. Indeed, more research with real users is needed, especially so for new technologies such as exoskeletons. According to Pons (2010), exoskeletons won’t be widely accepted in our society before the users are central in the design, development, and validation of them, and cosmetics, aesthetics, and dependability are important factors to be considered for this to become reality.

References

ExtremeTech. (2014). Harvard scientists design soft robotic exoskeleton to reduce fatigue and injuries. Found 2015-12-04, from http://www.extremetech.com/extreme/190025-harvard-scientists-design-soft-robotic-exoskeleton-to-reduce-fatigue-and-injuries

Ferris, D. P. (2009). The exoskeletons are here. Journal of NeuroEngineering and Rehabilitation, 6(17). doi:10.1186/1743-0003-6-17

Herr, H. (2009). Exoskeletons and orthoses: classification, design challenges and future directions. Journal of NeuroEngineering and Rehabilitation, 6(21). doi:10.1186/1743-0003-6-21

Mao, Y. & Agrawal, S. K. (2012). Design of a cable-driven arm exoskeleton (CAREX) for neural rehabilitation. IEEE Transactions on Robotics, 28(4), 922-931. doi:10.1109/TRO.2012.2189496

Nilsson, A., Vreede, K. S., Häglund, V., Kawamoto, H., Sankai, Y., & Borg, J. (2014). Gait training early after stroke with a new exoskeleton – the hybrid assistive limb: a study of safety and feasibility. Journal of NeuroEngineering and Rehabilitation, 11(92).

Nowogrodzki, A. (2015). Softly-softly approach. New scientist, 228(3043), 24.

Pons, J., L. (2010). Rehabilitation exoskeletal robotics. IEEE Engineering in Medicine and Biology Magazine, 29(3), 57-63.

Rajesh, S. M. (2013). Design of human exo-skeleton suit for rehabilitation of hemiplegic people. Procedia Engineering, 51, 544-553.

Tsagarakis, N. G. & Caldwell, D. G. (2003). Development and control of a ‘soft-actuated’ exoskeleton for use in physiotherapy and training. Autonomous Robots, 15(1), 21-33.

Veneman, J. F., Kruidhof, R., Hekman, E. E., Ekkelenkamp, R., van Asseldonk, E. H., & van der Kooij, H. (2007). Design and evaluation of the LOPES exoskeleton robot for interactive gait rehabilitation. IEEE Transactions on Neural Systems and Rehabilitation Engineering, 15(3), 379-386.

Wang, S., Wang, L., Meijneke, C., van Asseldonk, E., Hoellinger, T., Cheron, G., … & van der Kooij, H. (2015). Design and control of the MINDWALKER exoskeleton. IEEE Transactions on Neural Systems and Rehabilitation Engineering, 23(2), 277-286.

Zoss, A. B., Kazerooni, H., & Chu, A. (2006). Biomechanical design of the Berkeley lower extremity exoskeleton (BLEEX). IEEE/ASME Transactions on Mechatronics, 11(2), 128-138. doi:10.1109/TMECH.2006.871087

Image references

Image 1: http://robotenomics.com/2014/04/03/a-random-walk-with-hal-the-friendly-exoskeleton/

Image 2: http://www.technologyreview.com/news/530751/motorized-pants-to-help-soldiers-and-stroke-victims/

Image 3: http://www.gadgetsavy.com/gadgets/gadgets/228-future-elevating-wheelchair.html

Assignment 2: Blind

We saw “Blind”, a Korean movie, for this assignment. In the movie, we follow the woman Soo-ah who became blind in a car accident three years ago. She “witnesses” a crime and helps a police to find the perpetrator, even though her involvement makes her a subject to the perpetrator’s murderous wrath.

I found it hard to find blatant errors in the movie, maybe because I don’t have experience with being blind myself, nor have I met many blind people. However, I did notice that the protagonist seemed to be very good at finding her way as blind, and her sense of smell and hearing seemed very acute. While other senses usually get better when another is worse, I’m not sure if I buy that they get better so quickly. But maybe it’s just me who underestimate the brain’s plasticity.

Another thing I found curious was that she has lights turned on in her apartment sometimes. There are a few reasons for this that I can think of: perhaps the lights are for the dog or some plants (not that I saw any in the movie). Maybe the lamp is lit to show potential burglars that someone’s home. Or maybe it’s just for us, the audience, so that we can see what’s going on.

When Soo-ah gets out of the taxi she knows in which direction to go. The street is tilted upwards and she probably knows from where the car drove, and she has probably traveled there many times, but she seems very sure on which direction her destination is.

I’m not entirely sure how she drops a washing machine (?) in front of a door in order to trap the murderer in the other room. While it’s not impossible, it seems like she knew the distance between the machine and the door very accurately. For me, it’s hard to see how to estimate this distance without vision.

I’m also not sure what’s happening in the scene where she sets fire to the perpetrator. It seems like she knows where a mirror is placed, and manages to time to move away from it just when she is about to get hit by a bat. Instead, the murdered hits the mirror, and I guess the lit match she was holding is dropped on gasoline. Where the gasoline comes from is unclear, but I’d assume Soo-ah had poured it out and planned to set it on fire when the murderer was standing in it.

Finally, she managed to time her final hit on the murderer very accurately, even though she had never used the vibration tool before. I assume that a new aid would take some time to learn how to use it. Maybe she got lucky.

There are many things I wonder about a blind person’s daily life. A few interesting observations I had from the movie was Soo-ah’s cell phone, computer, and make-up.

The phone itself seemed like a quite normal phone except that it exclaimed things like “answer call” and such. How she found the correct name to call someone herself I still don’t understand; I just saw that she slid her fingers up a list of names.

Unfortunately, the scene when she uses her computer is very brief, but she had some kind of special keyboard. I wonder how it works and how a blind person finds their way to a specific website. I couldn’t hear if the key presses generated some audio feedback, but maybe it did?

I also found it fascinating that she bothered with make-up. Sure, she didn’t use mascara or eyeliner (which I can only imagine must be a nightmare to use without being able to see), but she used powder and lipstick with great care.

“If all those assumptions disappeared and people were more aware and more informed about everything, that would be great.”

Almost everyone wants to be healthy. No illnesses, no injuries, no pain. Most humans are also empathic beings, and we don’t want ourselves or others to hurt. So when we encounter people who suffer or seem to suffer from a disability or an injury, we pity them.

If you’re in a wheelchair, then you can’t walk. If you can’t walk, you might be in pain. At least something’s not right. Some people may try to imagine what it’s like not being able to walk, and think “Wow, that must really be hard! I could never get around without legs.” They can’t imagine to not being able to walk, so obviously it has to be very hard for the person in a wheelchair to live a normal life! So they pity the disabled person, and maybe they try to help them. How nice of them, isn’t it? The poor person in a wheelchair is a victim, and victims deserve to get help. Most people would want help if they needed it, and as a victim, you need help.

If you’ve got Down’s syndrome, there’s a big probability that you’ve got a intellectual disability. You can’t be expected to understand everything. So in a way, it’s not very surprising that many people treat people with a probable intellectual disability like they’re children. After all, children can’t be expected to understand everything, either. Even if the person doesn’t have an intellectual disability but just talks differently, it can be easily misinterpreted as if the person has reduced intelligence. Maybe some kind of instinct kicks in; children have to be taken cared of, just like people with Down’s syndrome or similar, or even some elderly people, really. (It happens quite a lot that people talk down to seniors, too.) So they all fall into a similar category, a “child-like” category.

Humans are herd animals, we like to belong in a group. When someone looks and/or acts differently we tend to notice. While I would like to believe that most of us don’t want to immediately shun or attack people because they’re different, it’s difficult not to stare. It’s a reflex to look at something that attracts attention after all. Since most people are (or at least look) normal (otherwise it wouldn’t be the norm), visibly disabled people attract attention. One could think that most people should have seen many people in wheelchairs, missing limbs, or having Down’s syndrome, but I think that since disabled people are in minority, they still look “exotic” enough to attract attention. Thus, it’s very hard not to stare, or at least give the person a few too many glances. In some circumstances you might expect the disabled person to want or need help from you. It can’t hurt to be on the alert for such a thing, right? Better keep an eye on the person to see if they’ll need help.

In the video “Disability, the Truth” (https://www.youtube.com/watch?v=MJ4JOomkyNI), we get another viewpoint, the one of disabled people. We learn that attitude is everything. It’s not about what you can’t do, but what you can. Disabled people still live their lives, they just do it in a slightly different way than most of us. They don’t constantly need help, they manage well enough on their own. As one person says in the video: “People think that I can’t live independently as a deaf person, that I can’t drive, that I can’t speak and other things like that, which I actually can do.”

I think that this is one of the biggest issues with the stigmatizing of disabled people: ‘Abled’ people lack understanding of the capabilities of disabled people. They see the problems, what they CAN’T do, instead of what they CAN do. It’s quite understandable, though. Not everyone knows a disabled person, many just have their own lives to compare with. Personally, I can’t imagine how I would live life as usual if I were blind, but as we see in the video it’s entirely possible: “[…] it’s like they don’t think that blind people can cook.” I think that there would be a lot less stigmatization if the public was given more information about this, just like the video provides. Perhaps it could be shown in elementary school, and the teachers could have a discussion with the pupils about it. This could help people to realize that they shouldn’t pity disabled people, and only help them if they ask you (and thus actually need help).

Apparently some people ‘help’ disabled people without even asking them if they need it first. Apparently they don’t realize that they’re not helping and just make the disabled person feel less helped: “When you’ve got a disability it’s hard to get around, but when someone pushes you it’s like they’re insisting you on doing something without you allowing it, but they’re taking away your control of what you can do.” Besides that this shouldn’t even have to be an issue since it should be common sense to not move someone without their permission, I think that some comedy movies might be of use regarding this. It might give some people food for thought if there was a scene when someone ‘helps’ an old or disabled person across the street, only to have they say that they weren’t going in that direction. In fact, I think that having more disabled characters in movies, TV shows, and similar would also help with normalizing the disabled. I’m sure people would stare less on the visibly disabled if they were a more usual sight.

In summary, I believe that we need more awareness of disabled people’s lives.

Blind rills (pair excercise)

We, Joakim Järvinen and Johanna Löfvenberg, went to the central station and studied the aids for blind people that exist there and elsewhere in town. We could feel the bumps and the rifles on the ground when we were standing on them, but we believe that it can be difficult to feel them with thick-soled shoes. However with a blind cane they should be quite easy too feel even with really thick soles. At some crossings there were poles that had an arrow protruding at the top, making it possible for blind people to feel the direction of the crossing. We thought this was pretty clever, but we cannot imagine how blind people find their way even with these aids. We did not want to try to walk using them with our eyes closed due to the amount of people who where hustling at the station, but we might have tried it if there had been less people there at the time. However, it is hard to imagine that these aids are sufficient for blind people to navigate. On the other hand is it hard to see what could be used as to help more with getting from point A to point B. We are also curious of how the blind learn of the aids. Is there information somewhere, or do they just learn by trial and error?