Health post: Permobil wheelchairs

Last week I had a Skype call with Permobil, a wheelchair-manufacturing company that started in Sweden in the 1960s. While still headquartered in northern Sweden, Permobil now has offices in multiple countries around the world. According to Vinnova, the Swedish government’s innovation agency, Permobil is the largest company “developing assistive products for people with disability” in Sweden (Vinnova 2011). Though my main purpose was to interview them about the attitudes towards electric wheelchairs that they’ve encountered, I ended up learning more about what types of questions I should be asking for my project.

First, I asked about Permobil’s process for developing new products. They have product managers that try to find gaps in the industry, but for the most part they build on what they already have. Permobil has been selling electronic wheelchairs successfully for decades, so their process focuses on fine-tuning and upgrading products that have already been on the market for 5-10 years. They also respond to government requests when building new products. The Swedish government will occasionally announce a competition to build a new product that meets certain standards, like price and comfort, and then various companies can compete to meet that request. Permobil enters these competitions when the product is a wheelchair.

Even fine-tuning an already successful product, though, requires some research. I asked if Permobil used questionnaires to do this, but that method doesn’t work for them because their users have very different disabilities that cause their need for a wheelchair. To use questionnaires, Permobil would have to isolate these groups and then develop a certain set of questions for each group. It is too much work to create so many individualized questionnaires, and then the sample size would be too small for the results to be useful. Also, Permobil does not have access to individual customers – because of the same privacy laws that prevent Giraff Technologies from reaching out to customers, Permobil cannot get contact information for its users.

As I mentioned, there are many reasons why someone might need a wheelchair. Permobil often designs many functionalities for a wheelchair beyond its most basic and necessary function: to transport from one point to another.For example, comfort and angle of the chair could come into play. Permobil had one test case with a patient who had a muscular disease that limited his movement. He would slide forward in his wheelchair throughout the day, so he had an assistant that would readjust his position 8-10 times a day. Permobil designed a wheelchair that was better shaped to hold him in place, and now the assistant only moves him once or twice a day. I can imagine this has many benefits, not just for the patient’s physical wellbeing but for his happiness and dignity as well.

But I wasn’t reaching the heart of my research question: what are the cultural attitudes to wheelchairs in Sweden? What factors influence success? As the Permobil people reminded me, wheelchairs are quite present in Sweden. They said that people in Sweden are very accepting both of wheelchairs and the diseases that require them (such as ALS, MS, and cerebral palsy). Also, every new Permobil employee must spend their first workday in a wheelchair. They often struggle, giving them an insight into the main challenges and needs of their target user population. While one day is not enough to know what it’s like to use a wheelchair for life, Permobil clearly makes an effort to be connected to the user. It’s crucial to understand the specific situation, they said. Their least successful design, in fact, failed because it had too many complicated “tech-y” features. It was too expensive and difficult to use. Sometimes it’s valid to make a simple design and have control over the costs of that design.

By the end of the interview, the men I was speaking with could see that I was struggling to narrow down my questions and get the answers I was seeking. I finally asked them for help, wondering if they might see what I was trying to achieve. They had some great ideas for approaches I can take in future interviews. They suggested that I focus more specifically on the process of selecting a new product to develop and then validating that product. New medical solutions emerge either because they are based on a new technology or because a patient need is newly identified. When I meet with various companies, I can ask which reason influenced their beginning. Then, how do they validate their product? After the product is validated – meaning that it has been proven to have the desired functionality – how is it verified? That is, how does the company make sure that it actually has a positive effect on the medical status of the user? What is the medical outcome, and how do they measure it? How do they make sure that there is a direct link between an added feature and the user’s health, rather than simply increasing the “cool factor” with such features? and so on. I think asking companies to distinguish between their validation and verification processes could be really valuable for my interviews.

I’ve been wondering why I had such trouble asking the “right questions” of Permobil (always a journalist’s challenge). I think it is because wheelchairs are such fundamental assistive devices. They have been around for so long – apparently since the 6th century! – that we accept them without question (https://www.wired.com/2012/05/wheelchair/). Clearly, they serve their purpose, as the wheelchair hasn’t been displaced in 1500 years. Yes, they’ve become electric, more comfortable, faster, and self-drivable – all important upgrades on the original idea. But the idea itself has persisted, which makes the wheelchair different from a smartphone app that reminds you to check your blood sugar levels, for example. I’ll have to work on my question set for medical solutions that have stood the test of time.

Advertisements

Health post: Diagnosing HAVS

While I was still in Malmö, I visited the Medeon Science Park there, a life-sciences park and incubator. I met with Ulf at VibroSense, one of Medeon’s member companies. VibroSense has developed a method and technology to diagnose hand-arm vibration syndrome, or HAVS, a lack of sensitivity to vibrations often caused by working too much with vibrating power tools. I tested the method out myself and learned about how the company came to be.

IMG_5040.jpg
Entrance to the Medeon Science Park, south of central Malmö.

VibroSense began when a professor, Göran Lundborg, was working on hand surgery in the 1980s. He was receiving patients that had numbness and tickling in their fingers, and yet no diagnostic tools could identify their problem. Decades of research revealed that all these patients had been over-exposed to tools like lawn mowers and high speed drills, which had damaged the mechanoreceptors and nerves in the hand.

So, how to test someone’s sensitivity to vibrations, or lack thereof? This is when Professor Lundborg realized that sensitivity to vibrations in the hand could be similar to sensitivity to vibrations in the eardrum; therefore, he focused on creating a method based on a hearing test. Rather than test someone’s ability to hear quieter and quieter phrases, he could test someone’s ability to feel milder and milder vibrations.

The VibroSense company was established in 2005 in response to the EU issuing “a directive saying that the companies that had…workers exposed to vibrations should offer them health screening and health tests and so on, and work actively to stop the injuries caused by vibrations. That directive was also transferred into Swedish law.” However, this directive had a smaller effect than VibroSense expected. Now, in 2016, they are a company of 10 people. In Sweden, 400,000 people (about 4% of the population) are diagnosed with HAVS. Ulf says that “HAVS is a big thing, but kept under the carpet.” To say that no one should use vibrating tools for extended periods of time would bring down industries that rely on workers using such tools in factories, for example, and workers trained to use such tools might not have the option to take long breaks or switch professions.

VibroSense’s product, as I said, is a diagnostic tool that assesses someone’s sensitivity to vibrations, much like a hearing test. There is a physical part, the vibrometer, with a vibrating peg that you touch and a button you depress while feeling a vibration. It’s transportable, non-invasive, pain-free, and takes about four minutes to test one finger. It’s standardized with repeatable results. At the start of the test, the peg vibrates at 8 Hz (8 times per second) and increases throughout the test up to 500 Hz (500 times per second). Much like a hearing test, the higher frequencies are more difficult to sense.

Performing the test produces a vibrogram, which is the non-physical aspect of the test. The vibrogram is a graph showing the results of your test, comparing your sensitivity to the “normal, healthy range” for someone your age. (VibroSense has performed many trials with non-HAVS people to determine this range).

vibrogram_pathologic.jpg
A vibrogram taken from VibroSense’s website. The pink bars show the normal range. This patient has severe HAVS, as their specific results fall far below the pink bars at several frequencies (indicating a lack of sensitivity). (www.vibrosense.eu)

Ideally, anyone working with vibrating tools should be screened by a vibrometer annually, before they realize any numbness. HAVS is preventable, but irreversible. As Ulf described, the physical process of sensing vibrations is “an integrated method.” Mechanoreceptors deep in the fingers communicate to sensory nerves in a fiber that then travels up to the brain. “So if you have a problem anywhere along this line, you don’t feel anything.” Many groups of people are susceptible to vibration-induced neuropathies, including “construction workers, car mechanics, [people in the] engineering industry or manufacturing plants, lumberjacks, road workers, slaughterhouse workers, park workers, dentists, dental hygienists and technicians.” Of course, HAVS was less of a problem before power saws and drills. Now, the only way to deal with it is to stop using such tools completely.

Today, there is a new purpose for VibroSense’s work: diagnosing diabetes in addition to HAVS. Diabetes patients also have sensitivity problems, especially in their feet. If left untreated, such neuropathies and circulation problems can lead to persistent ulcers and even foot amputations. VibroSense recently realized that they could use their method to find neuropathies in diabetic feet earlier rather than later, and they are developing a version of their technology that works for feet rather than hands.

I took the test myself, and while I attempted to take it honestly, I started to question myself as the vibrations became fainter and fainter. I worry that I was causing false positives, pressing the button because I knew a vibration should be there even if I couldn’t feel it (or did I feel it? Or was that the last vibration? and so on). My vibrogram result revealed that I was slightly more sensitive than average, especially at one frequency. No HAVS, though!

IMG_1216.jpg
Here is VibroSense’s product, the vibrometer. The patient lies their right hand on the pad of the blue part with their index finger resting on the small peg by the whole. Holding the red button in your other hand, you keep the button pressed while you feel a vibration.

 

I think the diagnostic area of medical device development is tough because you have to encourage people to get screened and tested even when they experience no symptoms. I’m not sure if that can be achieved simply by having an attitude that regular check-ups are important or even through industry-specific directives, which hasn’t seemed to quell the HAVS issue in the last ten years. Diabetes might be different, however. Ulf said that people with Type 1 diabetes seem to be good at self-monitoring (since they have to be and since they are responsible for their own treatment), and everyone in Sweden with diabetes is registered and followed in a special database.

Still, I think that VibroSense’s work is really exciting, especially in terms of the implications for diabetes patients. VibroSense is currently testing their prototype for a foot vibrometer on non-diabetic healthy volunteers, and once they begin testing it on diabetic patients, they hope to prove its capability as a diagnostic tool. Ulf described this process a bit, saying that they can only develop the product if they can prove its results. “We have to prove the method and we have to get key opinion leaders within the research community or [doctors in the health community] to recognize that this is something that gives proven results. Also then we have to get financed,” partially or even mostly by the government due to its control of the health care system.

I also asked Ulf about the general health attitude in Sweden. He replied, “Health is important. Swedes are quite physically active, they care about what they eat, how much they exercise and so on…I think we have a pretty healthy lifestyle.” At the same time, Sweden suffers from the worst habits health-wise as the rest of “all the Western countries,” says Ulf, “eating too much, lack of exercise,” and smoking, especially the teenagers. As in the US, there is a wide range depending on who you talk to and what their background is, especially with socioeconomic factors.

Goodbye Malmö

Two days ago, I left Malmö to return to Göteborg. I’ll be here for another 3 weeks, so I’ll be spending more time in Göteborg than any other city while I’m in Sweden. I’m not sure if that really makes the most sense for the project, but it made sense housing-wise.

IMG_0762.jpg
Malmö’s Stadsbiblioteket (city library) from the park, just a few blocks from where I was staying.

Though I felt ready to leave Malmö, it’s still hard to move on – harder than it was to leave Göteborg that first time a few weeks ago. First of all, I knew I would be going back to Göteborg. But I’m not going back to Malmö, at least not on this trip. If I missed anything there, too bad. I know for sure that there are more companies I could have contacted and tried to meet. For example, here is a map of all the “medtech” (medical technology) companies in the Malmö-Lund-Copenhagen area:

malmo medtech map (1).jpg
Taken from mediconvalley.com. Medicon Valley is the umbrella organization that contains Medicon Village in Lund, where I visited Emmace (the inhaler company).

Many of those places were quite far away from me, and some I contacted with no response, and yet I probably could have met with a few more. How much of a difference would that have made, though? I’m still working on the write-ups for a couple of my Malmö meetings,  so maybe I did the right amount of project work there. No regrets.

IMG_0764.jpg
Side view of the World Maritime University on a beautiful day in Malmö.

Maybe it’s the people I’m missing. I’m living in an apartment by myself in Göteborg, which is a huge change from my bustling Airbnb in the center of Malmö. I got so invested in the lives of Stella, my host, and her friends. I met other travelers like myself (though none staying as long as I did). I saw the same people every day, and we talked about our lives and went out together. I had enough of a social life that I wrote less frequently for the blog, as the need for that outlet diminished. My time in Malmö was an intense period of high highs and low lows (more on that later, perhaps), and now I’m back to the steady calm of being by myself in Göteborg. Time will tell which one I prefer, though I’m guessing it’s a mix of both.

IMG_0770.jpg
A while back I went to a free gallery in Malmö that was exhibiting the work of Damián Ortega, who has many pieces like this Beetle focusing on deconstructed objects.
IMG_0769.jpg
Damián Ortega’s “Tired Hammer” appealed to my engineering sense of humor.

Finally, there’s a bit of a weirdness to coming back to the same city and the same apartment where I started the Watson. It gives the impression that Malmö was a dreamlike whirlwind that may or may not have actually happened. So much of the Watson will be moving forward, saying hello and then goodbye to places for the first and last time before moving onto somewhere totally new. To return to a place feels a bit backwards. But I’m also glad to be in a bigger city and take a fresh look at my project now that I’m over a month (!) into the Watson.

IMG_1202.jpg
Malmö’s Clarion Hotel at night, with a Skybar that I never saw. However, I did get to go to the top floor of the Turning Torso, which is much taller! That was one of the highlights of my time in Malmö.

Health post: ArjoHuntleigh

Last week I was able to visit ArjoHuntleigh, a huge medical technology company that develops hospital solutions such as hospital beds, medical baths, and ceiling lifts to transfer patients within hospitals. They have an office in Malmö where I was able to meet with Kristina, who works in strategic marketing and clinical affairs, and Emma, who works on product development and validating ArjoHuntleigh products with end users.

Patient lifters – aids to get patients in and out of bed, stand up or sit down, and move through hospitals – are mostly developed by Scandinavian companies, Kristina said. She thinks this is tied to Scandinavia’s tradition of ergonomic design for the comfort of the end user. ArjoHuntleigh employs many user-focused design techniques both when identifying a need and when developing a product.

ArjoHuntleigh-patient-transfer-solutions-ceiling-lift-Maxi-Sky-2-carer-with-patient-PDPS.jpg
This is one of ArjoHuntleigh’s patient lifters, which I saw in their showcase room. (Photo not mine; taken from www.arjohuntleigh.com.)

ArjoHuntleigh is currently working on a project to identify customer needs for long-term care (elderly patients). They have teamed up with ReD Associates, a Danish company that does ethnographic studies. ReD is currently studying 30 individuals each in Japan, France, Canada, and the US, following them every single day for weeks at a time. As these elderly individuals wake up, use the bathroom, and get into bed to sleep, ReD takes note of their behaviors. Kristina mentioned that the goal of the study is not simply to see what technology can assist an elderly person to get out of their bed, but to see them in a more holistic way. How much time do they sit in a wheelchair? How do they manage having nothing to do for most of the day?

While this ethnographic study method is extensive and probably expensive as well, it reveals far more of the truth than yes-or-no questionnaires. As Kristina mentioned, “If I ask you, how often do you brush your teeth? When during the day? For how long?…You would probably answer one way. Then if I follow you, I would see that you don’t really do that. We do so many things that we aren’t aware of.” ReD Associates tries to dig deep and understand people’s reasons for doing things. When they see an elderly person performing a certain action, they’ll ask why that person is doing the action. Then they will ask why again in response. At this point, Kristina said, she starts to think “oh, you have got the answer now. But they just keep on asking why, a little bit annoying almost, but in the end they actually get much more information than I would have gotten. Because I would have stopped earlier.” These interviews, plus hours of film and tons of pictures, add up to a lot of useful information as ArjoHuntleigh considers customer needs.

I asked about the other ways that ArjoHuntleigh identifies gaps in healthcare when designing a new product. Kristina told me that the company has been around long enough that they get complaints and suggestions from customers. “But it’s a bit tricky,” added Emma, “because sometimes the caregivers say they would need this kind of thing to make the workflow work. But for us, it’s important to actually look at the workflow and understand the gap. Sometimes you don’t see, yourself as a caregiver, that if you did the thing in a different order, it would be easier.” Sometimes, the right solution isn’t a product but rather a change in workflow or a different approach altogether. As Kristina said, “We need to focus on the problem and identify the problem without talking about the solution.”

Emma works on a later stage in the process, after a product has already been designed. At this point, ArjoHuntleigh still gathers lots of information. The company pays caregivers to come in and use the products, and these sessions are always filmed for later analysis. Often, ArjoHuntleigh will provide little to no instruction to see how the caregiver approaches the product and if the design is intuitive.

ArjoHuntleigh works with caregivers at this stage for two reasons. One is simply that it makes sense; caregivers will be the ones operating the technology for the patients at hospitals, and they have an intimate view of what is most needed and how the patients suffer day-to-day. But the second reason is that ArjoHuntleigh is not allowed to use “real patients” at this stage. For safety, legal, and privacy reasons, sick and injured patients are not allowed to test medical products that are in development.

Of course, this sounds obvious, but it’s something I haven’t thought much about. Now, I think it is the biggest challenge that medical technology companies must face, especially those that design for hospitals. While ArjoHuntleigh can ask unhealthy patients what they want through questionnaires and send pictures of potential products, that’s not the same as seeing someone work with the device and seeing if it is intuitive. However, when developing a smartphone app for something non-medical, you can do test work with the target population at all stages of development. I suppose everything must be slower and handled more carefully with healthcare.

IMG_1213.jpg
Top view of an ArjoHuntleigh “x-y” ceiling lift. Here you can see that it is connected to two tracks, allowing it full range in a hospital room (thus the name, referring to the x- and y-axes of the grid in the ceiling).

Emma and Kristina described this further: “The problem we have with medical devices, and that’s the same in all the medical device industry…if you have a walking frame or something, you can’t test it on a real patient until it’s finalized and CE-marked. That is frustrating, actually, it is very frustrating that…we need to have acting patients, and in some research institutes they actually have professional ‘patients,’ people who pretend to have pain. But that is a challenge, I think. You can of course go out and see how they work with the products we have today and if they would work with a competitor, but you can’t bring in a prototype and ask them. It’s the legal legislation.” They are only allowed to use healthy volunteers until a product is CE-marked. You may have seen a CE marking on a product before; it’s the “manufacturer’s declaration that the product complies with the essential requirements of the relevant European health, safety and environmental protection legislation” (http://www.ce-marking.org/what-is-ce-marking.html).

Emma explained that once a product is quite far along in its development – and this is where her work is focused – it can get temporarily CE-marked. At that point, the final stage of testing is to introduce the product into the real market, lending it to a hospital with real, unhealthy patients. This is the “customer acceptance phase,” after ArjoHuntleigh has mostly finished the product and applied for CE marking but might make final tweaks. “For example,” Emma told me, “we tested a sling for a month in Holland in a hospital at two units, and we left the products there [for a bit]. And you have to supervise everything. If anything could go wrong, you just have to stop the study. Then they use the product in the intended environment with real patients. You send the sling to laundry and back again, for example, and you use it with all their products, which is very good for us because that’s the first time you realize, for example, ‘oh there’s going to be a lot of blood on the sling, is that going to be cleaned correctly in the washing procedure?’ I mean, those things you can test and verify here with a bit of blood, etc. But you wouldn’t imagine that it would be certain temperatures or that they use bleach,” for example. If everything goes well after 2 weeks or so, ArjoHuntleigh takes back the product and finalizes the CE marking. At that point, it is finally ready to be deployed. This phase is key to ArjoHuntleigh’s design process, as there’s always one more thing they haven’t thought of in the final environment.

Another design challenge that ArjoHuntleigh faces is its global market. ArjoHuntleigh creates products for multiple countries, all of which have different regulations for safety products. So even when a product is finalized and CE-marked in one country, ArjoHuntleigh might need to make a different version for another country.

IMG_1214.jpg
This is the back view of the sling seat from the first photo. ArjoHuntleigh’s designers do their best to ensure that the buttons and diagrams are idiot-proof for the user.

Kristina explained that products designed for US markets need to have more extensive manuals and warnings than those designed for European countries. She suggested that this “culture of safety” may have resulted from the ability to sue people, which I think is a fascinating argument. Basically, because Americans can sue other people or companies for huge sums of money, companies do their best to minimize liabilities. So US companies become very wary of people who might want to sue them, and thus put up lots of rules and disclaimers so that they are not liable if something goes wrong. Kristina described a time when she was at a pool in the US, and the lifeguards blew their whistles at her because her child wasn’t following some rule. It makes sense that pools have all of these rules in the US – they might get sued if something happens to any of the swimmers, and they should be able to point to a user failure to follow rules rather than a negligence on their part. But “in Sweden, there would be zero” lifeguards. People are responsible for themselves and for their children, and they blame companies or organizations less quickly for what might be their own failures. This difference, suggests Kristina, is perhaps why the medical device regulations in Sweden require fewer warnings in the manuals.

I think there is a lot of truth to this, but it was not intuitive for me. Since Sweden has a more socialist government than the US, I figured that there would be more oversight, more regulations, and more rules here than at home. But perhaps this Swedish sense of individual responsibility has nothing to do with the government. “If you are causing an accident or someone thinks that you are not driving carefully,” said Kristina, “that’s the problem. If it’s the radio, or the kids playing, or if it’s the computer next to you, or the phone – it doesn’t matter. It’s not the phone. It’s you.” According to Kristina, suing someone in Sweden is not usually a lucrative experience, and is difficult and time-consuming; so people just don’t do it very often. It wouldn’t surprise me if there were many more lawsuits in the US as a result of our capitalist nature and a desire to fight for monetary gain when there is a chance to do so.

I never expected a cultural difference in attitudes towards money to have an impact on healthcare, even in a small, indirect way. But that’s what this project is all about – how all these external factors might influence differences in the field of medical technology in different countries.

Malmö Festival

This past Friday marked the end of the Malmö Festival (Malmöfestivalen), an annual, weeklong party with free concerts, food stands, and all sorts of pop-up events. All over the city, streets were closed off, huge concert stages were put up, and amusement park rides were running all day and all night. Crowds appeared from who-knows-where, filling up the streets and restaurants throughout the festival.

IMG_1047.jpg
The kick-off event was a crayfish-eating party in Stortorget, the “big square.” This is also where the biggest music concert stage was. Unfortunately, though not surprisingly, it rained the first day!

The usually quiet town of Malmö totally transformed during the festival. I saw people drinking from vodka bottles in public spaces (which is illegal here, I think); trash accumulating in the squares; and cops putting drunk Swedes in their cars at the end of the night. It was a bit alarming to see everyone go so crazy all of a sudden!

IMG_1052.jpg
One of the music venues had a dance floor.
IMG_1206.jpg
The amusement park rides reminded me of the boardwalks on the South Jersey shore.
IMG_1210.jpg
Many popular Swedish artists performed at the festival. There were 3-4 outdoor concert areas like this set up, each one with multiple acts every evening of the week.

One city square was completely dedicated to food, with over 50 pop-up food stands and some tables for eating. I tried all sorts of crazy foods there at the most popular and recommended stands. Here is everything I ate at the festival:

IMG_4998.jpg
A “langos,” popular street food during the festival. It’s a fried, doughy flatbread that can come with different toppings. I got the basic set: garlic, sour cream, and cheese.
IMG_4996.jpg
A tasting portion of the mushroom wrap (kantarellklämma) from the Nordic Street Food truck.
IMG_5019.jpg
A chicken arepa sandwich from the Latin Truck. This was more substantial than the arepas I’ve had in NYC – I wasn’t expecting a full sandwich – but it was delicious!
IMG_5024 (1).jpg
The “lomito burger” from Victor Jara. A simple but delicious pork-and-beef burger at a food stand that always had a long line.
IMG_5038.jpg
A whole deep-fried banana with vanilla ice cream and honey. Not my favorite, but worth trying!
IMG_5050.jpg
I realize this looks awful, but this is very popular street food here in Sweden: deer kabab with “orientdressing” (mild mayonnaise-esque sauce) and, of course, lingonberry jelly.
IMG_5045.jpg
I waited 20 minutes in line for this at one of the most popular food stands. This sandwich is crispy roast pork on an organic brioche bun with red cabbage, thin pickles, and crispy fried onion. It came with a skewer of apple slices covered in cinnamon-sugar and “mysvarma fläskevålar,” which apparently means fried bacon rind!

Finally, I also went to Bastard Restaurant, one of Malmö’s most famous (and fanciest) restaurants. It has nothing to do with the festival except that I ate there during that week, which was the first (and so far only) time that I have eaten a meal by myself in a full-service, sit-down restaurant. It was one of those things, like going to the movies alone, that I knew I would need a certain amount of self-confidence to do. I think it’s valuable to learn how to feel comfortable in those situations, especially as a solo traveler. I don’t want to miss out on anything this year simply because it feels “weird” to do it alone. As I’ve said before, the Watson is all about stepping out of your comfort zone and learning how to do the things you want to do by yourself.

IMG_5042.jpg
I got their signature dish, the “Bastardplanka,” filled with way too many random meats to name. I had it with the house bread and a wonderful cocktail named “Zeus,” and I finished with a lemon-elderflower sorbet.

As far as budget goes, yes, this meal might seem too expensive. But as a previous Watson fellow once said, it’s better to eat peanut butter and jelly sandwiches for 3 days and then eat at the best restaurant in the city than to have four mediocre meals in a row. The budget is all about prioritizing; no matter how small it is, you can fit in anything you want if you prioritize. I decided that this might be my only time in Malmö and so it would be worth it to eat at Bastard Restaurant, even if that meant only eating pasta and cheap street food for multiple days before and after (which is exactly what I did). And it was worth it. The food was great, but more than that I was happy to conquer the weirdness of eating alone, sitting at a lovely table in a beautiful restaurant.

Now, the festival is over. I don’t think I’ve ever had as much meat as I did last week and I doubt I ever will again! The streets of Malmö have quieted and things are back to normal. It was fascinating to see the city get so wild, and I’m glad I was able to see so many music performances for free.

Health post: Work For You (part 2, morale)

This post is a follow-up from my last post, which introduced Work For You, a small company in Malmö that helps visually impaired people find employment in the city. People come to Work For You and explain their background, what skills they have, and what sort of job they might be interested in doing. Before Work For You matches these participants with employers, they do a practique program with the participants. This is essentially a training stage in which Work For You readies the participant for the job they intend to do, teaching them how to use the software and equipment that they will need at that job.

While a participant undergoes this practique, Jens and Reine need to figure out the best way to “make this work accessible for this person. So we have to go out to the place where they should work and talk to the boss and the colleagues, and we have a look at the location and so on, and find out what is the best way to make this as good as possible.” This company survey process is one of Reine’s favorite challenges of his job, and Work For You now has solid relationships with several companies.

Before visiting companies, Jens and Reine call them to introduce their program for the visually impaired. If the companies have a negative attitude over the phone, Work For You doesn’t pursue a relationship with them. Many companies, however, are not entirely negative but have their doubts. They say, “How can a blind person work? It’s not possible. We don’t have any blind people here.” Then Work For You tells them about the technology they have and all the visually impaired people that have been successful in various jobs. They will often visit a company in person, bringing along a visually impaired participant who demonstrates the skills they developed during the practique stage.

While some participants show up to Work For You knowing for whom they would like to work, it is most common that they don’t know what they want to do. Work For You tackles this problem as well by finding out what their participants’ capabilities are. They also do some research when they first meet a participant, learning what they have done before in life, what skills they have, and what type of education they had.

Jens and Reine both believe that education is a huge factor in the success and morale of a visually impaired person. One of their biggest challenges is working with visually impaired people who didn’t get the proper education or treatment when they were young. “If they got the right help in school,” said Jens, “they will be motivated for the rest of their lives.” Otherwise, they struggle with moving forward and getting jobs. Jens thinks that the visually impaired need to educate themselves more because many did not get the full extent of the help they needed in school.

Reine also finds a big difference between people who are born with their visual impairment, like he was, and those that develop it later in life. As he said about himself, people who have always had a lack of sight “know that it’s no big deal. They know you can live with it and sometimes use it to your favor. But if you have been sighted and get a visual impairment it’s often a big trauma. You have to go a little bit slower and you have to build up the motivation and come to that point when they experience ‘oh okay, my life has not ended. I have to live my life in another way, but it works well.’ So this takes time.” At Work For You, this difference impacts the duration of each participant’s practique stage. Participants who are just figuring out how to navigate their visual impairments might work with the job consultants for much longer than others.

Reine told a story that he uses to look at blindness in a more positive and creative light. One of his previous employers was a company working on stabilizing the steering system of an aircraft. This company employed a blind man to encrypt the steering system. They specifically chose a blind person because he would not be using a computer screen at his workstation. Instead, he used a Braille display to do all of his work, and none of his nearby coworkers understood what he was doing. Reine said that the company was thrilled with this because the encryption work was sensitive information, and it would have been problematic if anyone nearby could have seen the employee’s screen and understood what he was doing. “So you have to find out…how you can use your disability as a positive thing,” said Reine. “Not just sit down and say ‘oh no, [I] can’t do anything,’ but you have to say: ‘what do I do better because of my blindness?’”

Reine and Jens told me that about 60% of visually impaired people of working age in Sweden are employed. While they have seen mostly positive attitudes from companies and have had small successes, they are still working on employing the remaining 40%. Reine believes that awareness of the capabilities of visually impaired people will close the gap. He said that today, we have a lot of technology for visually impaired people, and we have the right technology. But not everyone knows that it’s available or how to use it, and not everyone realizes that visually impaired people can still work. “The biggest challenge is no longer to make technology,” he said. “We have come very far in that way. The biggest issue now is making companies and employers understand and be more interested in employing people.”

Health post: Work For You (part 1)

Last week, I visited the offices of Work For You here in Malmö. Work For You is a company that helps disabled people find employment – specifically, visually impaired people. They provide training, job consulting, and equipment for their visually impaired clients, or “participants.” Work For You then matches its participants with a job at a company in Malmö, having formed relationships with various companies over the years. Work For You has offices in other cities in Sweden, and not all offices focus on visual impairment. The Malmö office is fairly small, with fewer than 10 employees.

I spoke with two people there, Jens and Reine. Reine himself is visually impaired, which makes him uniquely qualified to work as a job consultant at Work For You. He told me that he sees about 3% of what a person with full vision sees, and he works with a guide dog named Timmy. I asked Reine about the process of getting a guide dog in Sweden.

“I’m 36 years old now, and I have been visually impaired since I was born,” he said. “I have always had the same sight, or loss of sight. So for me, it’s no big deal to be visually impaired.” Since Reine has never experienced more than 3% of total vision, his vision impairment is simply his vision and a part of normal life for him. He has used a cane for most of his life and only got the guide dog a few years ago. His wife, however, is almost totally blind and has had a guide dog for about a decade. Reine found himself enjoying walks with his wife and her guide dog so much that he eventually decided to get one.

“I can walk with my white cane and I can walk together with some friends, but when I have my guide dog, I can walk much faster, and I can relax because I don’t need to always worry ‘is there something there?’ I’m more relaxed and I’m faster when I walk with a guide dog. So after a couple of years, …I made contact with the guide dog distributers.” When you get a guide dog in Sweden, you first attend a seminary about having a guide dog and go for a test walk with one of the dogs. “I knew a lot about it because of my wife, but it’s another thing when you walk with a guide dog by yourself,” said Reine. “You get a special feeling. From that day, I decided that I would have a guide dog too. I have never regretted it. I think I will always have a guide dog. It means very much for my orientation and my capability to walk around more independently. So this is one kind of accessible help – it’s not technology, but it means very much to these people who have guide dogs.”

Reine described this accessible help with the Swedish word hjälpmedel, which essentially means ‘assistive tools/technology’ in English.

Other than his guide dog, Reine’s main assistive tool is his iPhone. Apple has many built-in accessibility options, the most important of which is VoiceOver. VoiceOver is a screen reader application available for MacBooks and iPhones, which reads aloud all the words and options on a screen. Users can also interact with VoiceOver by swiping and tapping on the iPhone screen, or using the arrow keys on a laptop, in order to read about the next thing or choose an option. This way, you can completely control and interact with your device, all without ever seeing the screen. Reine uses this feature every day to interact with his phone. He uses it to hear the news, check the weather, and even text – VoiceOver can help you type messages by reading the keyboard characters aloud to you (note that this is different from voice control, when you ask Siri to send a text and she translates your voice into words).

Reine has the VoiceOver voice set to a fast speed and is able to open the apps he wants very quickly. “This is something I use very much, and it’s very useful for me because it helps me to stay connected to people and it helps me to orientate. I have some GPS applications.” If Reine is hungry, for example, he tells Siri he’s hungry and she suggests nearby restaurants for him to go to. Then, using VoiceOver and a mapping app, he can get to a restaurant by himself. Having access to a calendar is also very helpful. “The calendar is a very big thing for me because before the smartphones, it was very complicated for me to organize my life,” Reine described. “I needed to write [events and reminders] down in Braille and then I needed tools with me to do that. Now I have everything in this little device, so this is one thing that has made a revolution in my life, and in many disabled people’s lives.”

At Work For You, screen reader applications are one of the most important technology aids. When visually impaired people come to them for help getting employed, Work For You makes sure that they know how to use a computer. Apple’s VoiceOver and the PC equivalent, JAWS (made by US company Freedom Scientific), are screen-reading accessibility applications that have been around for years. Visually impaired people can learn to use these applications at Work For You.

Perhaps even more important and ubiquitous assistive devices than screen reader applications at Work For You are magnifiers. Most visually impaired people are not totally blind; however, they can only read words at high levels of magnification and in high contrast. This is an easily solvable problem on computers using the application ZoomText, which can magnify the text on any Windows computer. One version of ZoomText comes with a built-in screen reader, too. For any other type of text someone might encounter, Work For You provides a magnification camera that can be positioned in many ways and pointed at objects or labels, which are then displayed at a high magnification level on a high-resolution monitor.

So by equipping participants with magnifying cameras and computers with screen readers and text magnification software installed, Work For You is able to prepare many visually impaired people to enter the work force. For example, they have three visually impaired people working in grocery stores right now. With the aid of the technology they have been trained to use, these three participants are able to work cash registers and restock groceries on the shelves. Though they need to use a magnifying camera to read the labels on the shelves and figure out what should be there, they are able to complete their jobs independently. Also, the cost of equipment is no obstacle; Work For You provides computers, cameras, and the VoiceOver and JAWS software for free to anyone who is at least 70% blind. (If someone can see more than 30%, they can still get the software for free but not the hardware).

Reine mentioned that most visually impaired people who come to Work For You have already encountered these products before they arrive. “They go to a medical place, like a center for the visually impaired, and they get to learn these programs if they need them,” he said. However, while most people have heard about these products, they don’t necessarily know how to use them, and they know more about the magnification functions than the screen-reader functions. “Then we train them to use these when they’re writing in Word, for example. In Sweden, most of these kind of things, like accessibilities for computers, and guide dogs, and things like that, it’s financed by the state or by the public. It’s free for everyone.” The only thing he had to pay for, said Reine, was his iPhone.

Work For You also makes an effort to personalize the technology by figuring out what will help the participant best in the work they want to do. Jens described, “we do the research beforehand to see what they’ll do here. See the tasks you’ll do. Then we look at what will help them to do this, with the special equipment…it can be a camera, for example, if you work in a shop where you sell groceries and stuff like that, and there are these small barcodes, but you can’t read the numbers.” There are many variations in the magnification and screen-reading technologies available, so Work For You must consider what is the best solution for a participant.

(I spoke with Jens and Reine for a long time, so I’ve decided to write about Work For You in multiple, shorter posts. Part 2 is coming soon!).