Insights

  1. Technology is for the smile of life, by Yoshiaki Takahashi, Office Yui Asia Limited
  2. Disabled Intelligence, by Kati van der Hoeven-Lepistö and Henning van der Hoeven
  3. Expressing, thoughts and emotions, by Kati van der Hoeven-Lepistö
  4. Sisu voice system project, by Heidi Majander

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Technology is for the smile of life

The Golden Brain Project

There may be many people who have very good ideas in their brains, but they have no way to tell others. They just can not speak or write because of sickness and/or disabilities, and so people may think they don’t have any ideas.

My job is to mine the gold using ICT. I believe that some of humanity’s most serious problems may already be solved in their brains. To find gold through communication is the mission of the Golden Brain Project.

Communication; it is a keystone for saving human beings, I believe.

” They just can not speak or write because of sickness and/or disabilities, and so people may think they don’t have any ideas.

I should not assume things.

If you know other people better, you will be more interested in them. Then, you will be free of prejudice, and there will be no discrimination. Ignorance causes problems.

I had never talked with people with cerebral palsy until five years ago because I thought they could not make conversation. I didn’t know anything about cerebral palsy, and I believed they couldn’t. Now, a young man tells me about his ideas, his mind and wishes by using our app. We are friends now.

If I find something which someone cannot do, it may be something that I can help them with. If I can work for others, I am lucky. By knowing others I may help myself.

Normal means to be as it is.

My other friend can not move his body by himself because he is sick. He can move three fingertips, and he sends me messages by Mac. We learn about useful tools and write reports together. He gives me advice when I have problems. He always smiles and shows me positive ways.

He has never complained about his situation. He has never said that “If only it had not happened to me” nor “If I was not sick like this”. The current situation is normal for him, and he always tries to make it better and to be better.

Disability and sickness may be an inconvenience, but not unhappiness. He is happy that he tries to be better in the life he has been given.

”Disability and sickness may be an inconvenience, but not unhappiness.

TechNOWlogy

It is necessary to carry out research in technology that will affect our lives in ten or twenty years time. We are living comfortably today as a result of past research. Technology is always evolving. It is not a good idea if we only think about new technology, and not take care of improving existing technology. It may be too late to find a solution for today’s problems in ten years time. So, we use existing technology that is techNOWlogy.

I am writing this text on my mac now. I might have a brain infraction tonight, and I may have aphasia and it will be difficult to express my wishes to others. Then, someone may say to me “It will be possible to express your wishes  using a fluent artificial voice in ten years”. I prefer to order my favorite caramel macchiato at a coffee shop using an app. It is possible to do it today.

To combine existing technology to make a better quality of life is technology, I believe. To make a given situation better with an idea, that is life.

 

To form relations between people with a smile

This is our target. To form relations between people with a smile not with money. It would be sad to have lots of money, but no friends at the end of my life. Life is happiness even without money, but with a smile.

If our products make people smile and it brings a better quality of life, we are also happy.

We never know about tomorrow, and we can not change yesterday. We prefer to use ICT to make people smile today. Technology is for the smile of life.

Yoshiaki Takahashi
6.10.2016

Yoshiaki Takahashi  is ceo of Office Yui Asia Limited. Company operates in Japan and also in Finland/Europe. Yubidenwa is an app that makes iPhone/iPad speak on your behalf when you are in a no-talk situation or if you have speech difficulties.

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Disabled Intelligence

”Food for thought; should people who are physically less abled and who have a disabled person’s intelligence be more involved in developing technology and making the choices for less abled humans?”

It may not be clear to everyone; however, after any tragic event (accident, diagnosis of malignant disease or a stroke in my case) everything changes. Not just the obvious, but even details you never thought about before. The smallest element can change a whole scenario. The tiniest incident can cause a domino effect that turns everything around.

My life is the same. However how I go about it is different from how a perfectly healthy person would go about their lives. What seems to be important to some is meaningless to me and vice versa.

We all have and live different lives in different ways. One does not need to be paralyzed to live life in a different way. You can do whatever you like and those who like it can join you and those who do not do not need to participate. Quite simple really, no problem at all.

”New visions and ideas come to life. You develop a disabled intelligence.”

One issue though is that a perfectly healthy person who has little idea about how it feels to be in a particular situation takes decisions about what is best for people in those situations.

Most people have the best of intentions. They may study the situation  and understand it very well, nevertheless, understanding it is not the same as living it.

When dynamics change, the variables change as well. The mind evolves in a different way and so does the spirit. New visions and ideas come to life. You develop a disabled intelligence.

It is not only those in the predicament whose minds form like this, but also those close to the less abled person.

First things first, and number one on the list is communication. Understanding would be limited, and we would not get far if we were not able to communicate. In fact, lack of communication makes perfectly healthy humans more disabled than any person with a physical handicap who is still able to communicate.

I am living proof that communication changes everything. The one thing that makes my life still worth living is the fact that I can still speak my mind (even though it is not with my mouth) and share my emotions. Think about it; after the stroke I was completely paralyzed, not even able to speak, I wanted to die. Now twenty-one years later still unable to move, I am nevertheless able to speak (with my eyes), I enjoy my life, and I want to live, live, live.

The one main difference was the willingness to learn a new way of communicating. There are people who rather choose a life without communication. The story of my life would have developed in a completely different way if I were not able to connect, INTERACT, keep in touch or reach out.

Right after the stroke, when all my muscles went numb and I was not able to speak anymore, the only way to communicate was and still is by blinking my eyes as ‘yes’ or ‘no’ to questions. Imagine playing a guessing game all day long. How frustrating that gets. That is not interacting. It is more like a dead fish that goes with the flow of someone else’s thoughts.

So, do you see? Even a paralyzed fish can swim against the current and find its way if he or she can communicate. I do not know Stephen Hawking personally. However, I am confident that he would agree with me on this. If a person can connect and interact no matter his or her circumstances, he or she can contribute to living in general.

”It means that they have a choice like everyone else about what they want to do and who they want to be in their lives.”

Food for thought; what do you think? Would we be able to get peace on earth and heal the planet if we humans could learn to communicate with each other better? …

The first step in rehab was to learn to speak using my eyes. ‘Air Alphabet’ letters on a transparent board. I would look at a letter, and the person I was talking to would spell out the words. That is how my daily dialogues with my husband, mother, and assistants develop. It is quite easy and fast once you get the hang of it.

The second step was of course technology. Using a computer without typing with my fingers. A computer with special software, an infrared camera placed on the monitor and a reflecting dot put on my forehead works as my mouse. An onscreen keyboard and voilà! The Internet, emails, word, Facebook, etc. … life is good.

Technology develops and computers learn to speak. Nowadays they can even be used as a voice for those who are unable to communicate. Good for them you might think. They can have a better quality of life. However, this is much more than just a better quality of life. It means that they have a choice like everyone else about what they want to do and who they want to be in their lives.

A few months ago, I got one of these tablets that can speak. I can have my voice! It sounds splendid doesn’t it? Well it is in a way. Nevertheless, it is not quite there yet. It is slower than my normal way of communicating (air alphabet).

That is not such a big problem. I know that the technology will keep developing and that it will get there someday. I am sure of this because I know personally some of the people who are working on this, and I know how passionate they are about making the system better.

One problem that worries me though goes back to our lack of communication, which leads to a lack of understanding.

When the choice of a tablet was made, a person who does not understand my situation and does not have all the information to make the right choice made the decision about what is right for me. It is not the fault of the person in question, but more of a problem in the system (bureaucracy you could say).

Although I have some movement in my neck, I still do not have an as much control over it as everyone else. The tablet that I got is too small for me. It makes it hard for me to hold my head steady enough to make the right click (far too often my head moves slightly and it clicks on the wrong spot, even deleting everything I have written in the most extreme cases) which makes it very tiring and annoying and makes my neck hurt.

Another annoying problem is that the program consumes a lot of energy and the tablet soon needs recharging. That would not be such a big problem but the plug-in port that is used for the charger is the same plug-in port utilized for the infrared camera, which means that I cannot work on the tablet while it is charging.

Food for thought; should people who are physically less abled and who have a disabled person’s intelligence be more involved in developing technology and making the choices for less abled humans? Mmm …

Kati van der Hoeven-Lepistö and Henning van der Hoeven
4.5.2016

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Photo: Kati and Henning at Sisu voice system-project 6th meeting 2016 at Helsinki University. Photo: Zahra Khavari.

Expressing, thoughts and emotions

Imagine yourself in a nightmare: being tied up in a straitjacket, being locked down in a glass box and thrown into a pool. You can see everybody standing there around the pool looking at you sinking. You are going down, and you are trying to yell aloud, but the words just will not come out.

It was horrendous. I lost all notions of time and space. I did not have any idea what was happening to me; I could not understand. I could not move at all and worst of all I could not say a word. I could not say how or what I was feeling.

Only thing I could do was to look around me with anxiety, seeing the desperation in my parent’s eyes. I could see that even though they still could move, they were still just as paralyzed as I was.

As I recall about these moments I still feel like it was the most horrific thing ever, thousand times worse than the scariest horror movie. It teaches you something when you are in this state, something unique. Many give up on life; they start to feel sorry for themselves, but others face horror and extract energy out of panic to rise above it.

I felt desperate on the day’s following the stroke. That desperation was not so much, because I could not move but because I could not communicate. I could not say if I were thirsty or hungry. I could not do anything to let anyone know when something hurts or itches. Only thing I could do is cry aloud and hope that my mother or the nurses could understand somehow what was wrong.

I could feel my saliva running down my chin; I felt embarrassed. I was unable to control my spit, unable to move anything except my eyes – and even they could not focus right.

I had to breathe through a valve stuck in my neck after the stroke. It was put there three days after the stroke to ease my breathing from all the slime.

After a few months, the doctors recommended trying some different speech helping equipment. They changed the normal valve to a special valve that could help me develop some speech. After the nurse had introduced this valve to my trachea, I had to try saying something by breathing as hard as I could. However, all that I could get out was a loud breathing sound like some pervert on a phone. Otherwise, it was just silent.

”It was not easy getting used to breathing through the long neck again!”

Breathing before trachea was made to throat is like sucking air through a straw. Three months later, they decided to remove the valve. It was time to close my throat. They just took it out and left it to heal. It took only 14 days for my throat to heal, and it is hardly noticeable now. It was not easy getting used to breathing through the long neck again!

There never came any changes with my speech situation even though we tried some different techniques. Weeks, months and years of work with nothing to show for it, super annoying! It was one of the main reasons why I stopped with speech therapy. Who needs spoken words? Not me. The secret of communicating is not in being able to speak, it is in being willing to open your heart and saying what you think and how you feel, in being honest and sincere. It is in be willing to listen and trying to understand. In addition, even though you may not understand the other person completely you should still respect their opinions and emotions.

When the speech therapist came with the Plexiglas board with letters on it, and I tried it for the first time, I felt like this little simple thing was the greatest invention ever made. Even though that at the time I could not even imagine what a mind was blowing difference it would make in my life! Thanks to alphabet board, I was able to ‘talk’ to mom again spelling out words and not just by blinking anymore (one blink for yes and two for no).

Not being able to communicate made me realize what it means to communicate with another person. Communicating is not just about talking or writing, listening or reading. It is deeper than that; it is about expressing and absorbing. It requires you to have an open mind and an open heart; you should be in touch with your feelings just as much as you are with your thoughts. It is the only way to be able to express yourself honestly and with total sincerity. It is the only way to absorb and understand what (how) others think and feel.

Being able to communicate again felt SO amazing.

One thing about spelling though, it goes slower, and it requires some patience. To make it go faster, you skip the part of being polite, and you certainly cut through the chase. I know I sometimes sound extremely rude one of the reasons being that there are no different tones in spelling.

Sometimes you could read in my face if I am extremely angry, happy or sad but not all of the time. Many times people understand me completely wrong because of that. They translate my spelling according to their mood. It is the same way as when speaking; words can have different meanings depending on what kind of tone you use.

When serious or long conversations are needed, it is better for me to send emails. In that way, I can explain myself better and then there are no misunderstandings like so many times when spelling. Secondly, it saves me big time since spelling is time-consuming. In addition, if that person spelling with you is not the most fluent one he/she will concentrate more on spelling rather than understanding the actual message.

Spelling requires patience, sometimes a lot of patience from both ends. Then if that other person is spelling in not their mother language it is a whole other ball game with own special problems. Imagine this; I have one board for with the Latin alphabet! Therefore, I can be spelling English with my not Finnish friends and another board with the Finnish alphabet! What is the same as the regular Latin alphabet but with an additional three letters. Most of the letters are on the same place on both board, but not all of them. Now Imagine being in a three-way conversation spelling Finnish to one person and English to the other. Yes, it can get confusing. Many times, I start spelling to Henning with the Finnish letters position on my mind and to mom with the English one. The most confusing case is spelling in Finnish but with the English letters position in my head. What is also very confusing is English spelling friend who pronounces the letters in the Finnish way. Talk about confusing!

”One main way to solve our problems and live a better life is by communicating with each other.”

It is not completely uncommon for me to lose it. Now that I´m getting older I have developed more patience (I hope), and I can handle it better. There are times when that still happens and when it does, it can feel like I am losing it completely. It´s nothing personal but sometimes I just get tired with the ongoing situation. In addition, when that happens it also shows physically. My muscles start to shake and tremble, legs go straight (thank god for the seat belt or I would end up to the floor), teeth grinding… which I cannot do anything about it. I have no control over my body and when it goes off it stretches out (you cannot imagine with how much power). I just overflow for a moment like a broken dam. Shows what power mind has over muscles. Another scenery is that I get so; SO frustrated for not being understood that I just give up and cry. That does not happen very often though. Good thing about all of this is that it is just a passing thing that last maybe 3 minutes (when it is very bad) but not more. I certainly do not stay and linger in it. A few seconds later, it is as nothing has happened, and life continues normally. I do not let it ruin the whole day. All people should learn that. Just to forgive and forget with everything in life and not let, for instance, some stupid argument ruin lifetime relationships.

The closer you are losing your life, the more alive you feel. In addition, the more you understand to enjoy life afterwards.

There is a saying (men can relate to this saying better than women, we can only imagine it);”It is when a mosquito lands on your testicles that you realize that there is always a way to solve problems without using violence”. One main way to solve our problems and live a better life is by communicating with each other.

Today is a great day to tell someone how you feel. Find a way to do so. If not in person then by phone, call or text, by email, use Facebook, and if none of this possibilities are not available, then just use the old fashion way and write a letter. You never know if this would be your last chance to tell them what needs to be said.

If you are lucky, enough to speak to them in person then do not forget to do so. Look them in the eyes and say what you need to say, and look them in the eyes and listen to what they need to say to you.

Kati van der Hoeven – Lepistö
Board Member at Cogain

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Sisu voice system project

On a sunny day 2014 we were preparing food at my friends home. She handed me a drink and short after  her six year old son said: ”mother’s friend drinks white wine”. I run to him, what did you say, what did you say!  He was using voice system. It was the first time I heard him speak. Voice system and eye control input device seemed wonderful. The synthetic voice though struck me bit odd. It was a monotonous man’s voice. That day we started this project with two questions by the parents: could we get a synthetic voice that would sound more like the user and would it also be possible to express the emotions? As the project continued more questions rose. Now we know what needs to be done, but do we as a society have the will to solve things right? Anyone of us may need communication aid at some point and the aid should be there for you when it happens. Currently only fraction of the people with cognitive abilities world wide get the aid.

 

Heidi Majander, project coordinator
31.7.2016., 5/2017