- The perfect speech device… until, by Elina Ino
- Technology is for the smile of life, by Yoshiaki Takahashi, Office Yui Asia Limited
- Disabled Intelligence, by Kati van der Hoeven-Lepistö and Henning van der Hoeven
- Expressing, thoughts and emotions, by Kati van der Hoeven-Lepistö
- Sisu voice system project, by Heidi Majander
The perfect speech device… until
My presentation in Romania, Spring 2017.
My name is Elina Ino. I am 26 years old and I come from the cold Northern reaches of Finland. This year marks the hundreth anniversary of our nation’s independence, which means a great celebration next December. My family consists of me, my parents, my sister, my step brother and my 3½-years-old nephew – who is quite the rascal, but at times a real angel. I have cerebral palsy, for which reason I need assistance around the clock. However, I feel that my disability hasn’t slowed me down. I have bungee jumped two times, flown in a hot air balloon and been in a wind tunnel, which was a blast. My parents have always been going to places with me despite my disability. For example, the balloon company built me a platform inside the cabin, so I could see better.
At the moment I am eagerly looking for a job, and for education to become a youth leader or something in the social security. I wish to get a job in the social security one day, but unfortunately it’s really hard to get a job where you don’t have to talk. I have freelanced at different schools telling people about my assistant dog, or helping aspiring interpreters train their task. I have often thought how good it would be to have a kind of chat, where especially young disabled people could ask for advice when life feels challenging. I have my own peer support group for families of CP children, where they can come by and ask pressing questions about everyday life. For over a year I have known a little girl, who is practicing the use of Mytobii. Her father thanked me, because someone had doubted his daughter’s ability to use Tobii, but I instantly saw how keen and sharp the girl’s gaze was. You always have to try.
I live in a HOAS-student apartment, where we have assistance 24/7 whenever necessary, to facilitate leading an independent life. It’s a normal apartment building, with two of the floors reserved for physically disabled people and the rest for able-bodied people. The assistants have an apartment for themselves, where they hang out when there’s no work. I call for assistance using an alarm, which is installed into Tobii. With Tobii I can also open the doors, control the television, and turn the lights on and off. I also have a personal assistant for life outside the house. When shopping I can manage with just my dog, except when I need to get a lot of stuff, then I need an assistant. My hobbies include swimming, photography and riding. I like to do wild, daring things. Next to me lies my trusted companion, my assistant dog Jopo. Jopo is six years old and has been with me for four years now.
My everyday life mostly consists of taking Jopo for walks, going to different educational events and doing freelance gigs. For example a few times last spring I talked to students of occupational therapy about my life and experience as a client in the social welfare and healthcare. I also went to some vocational schools to ask the youngsters if they had applied for summer jobs, and what they found challenging regarding that, and what could be done to improve the availability. From these I got a decent salary. I have freelanced under my friend’s company name, so it’s easier to get paid when I’m giving a talk somewhere. I write my blog whenever I have the time. Me and a friend will publish a poetry book one day, although as to when that shall happen is a matter as of yet obscured from knowledge. I meet my friends almost every week in the Helsinki nightlife. I’ll tell you a bit about Jopo before we get to business. Jopo’s job consists of picking up items, taking off clothes, pushing the button for the elevator and the traffic lights, opening windows, closets and doors, handing me things in the store, and giving the wallet to the cashier and back to me. Jopo has given me the courage to go out on my own. For example if my friend asks me to go out all of a sudden, and I do not have an assistant working at that moment, then I just take Jopo with me and off we go!
When I was child I used to go into the candystore, although I had no proper way of communicating. Still, I always got the candy that I wanted. I have always been able to make myself understood with AAC (Augmentative and Alternative Communication) or without. I cannot remember a single situation, where I have not been heard. My sister was the best in interpreting my messages and my gestures. I probably thought I was speaking through my sister. But when I first saw somebody using a speech device, I knew that I wanted one too.
Nowadays when I look back, I do not miss any of those old methods of communication. If I remember correctly, in the kindergarten I only had a few Bliss-symbols on my wheelchair’s table, and I would show them separately. As a child I would mostly communicate through gestures and facial expressions, which still serve a very important role in my communication.
”My mother always wished me to be able to share my thoughts and ideas more freely.
My mother always wished me to be able to share my thoughts and ideas more freely. At home we would mostly manage well without any assistive devices. When I wanted to tell longer stories, we had to adopt AAC. In Ruskeasuo school there opened a whole new world to me, when we started practicing the use of AAC on a regular basis. We also sought out different communicative devices for me, and tried every possible option. But I was so demanding, that not any device would do – it would have to be just the right one for me.
In elementary school I would use the Bliss-folder, and later when I learned to write we would glue letters to my table, because I wanted to use colloquial language with my friends. I had to repeat my words many times with both Bliss-symbols and letters, because especially with longer sentences, people would tend to forget my message. This was really frustrating for myself as well as others. An assistant from my childhood still remembers how the pages would just fly when my friends turned the pages of my Bliss-folder with such a rapid pace, and only my true friends could keep up with my message. When I started junior high, I got a Lightwriter text-to-speech device. I would operate it using my nose – the same way in which I still use my phone. My parents told me that I could not have a phone before I found a way of using it. Therefore I invented the method of using my nose. It often made me sad that my messages were always late. Once I had finished my message and it was ready to be delivered, everyone had already moved on to the next topic.
If they can make a smartphone that works in the rain and freezing cold temperatures, then why not this vitally important communicative device?
When I was younger someone asked me what would the speech device of my dreams be like. I answered that it would be very much like Tobii, but the size of a tablet. It would be light, portable and could be strapped on tightly to my electric wheelchair. It could be taken with you to bed or put on a regular table. And, it would be wonderful, if it could withstand the weather circumstances of Finland. If they can make a smartphone that works in the rain and freezing cold temperatures, then why not this vitally important communicative device? For example, waterproofness would be a highly valuable feature. But I do consider myself lucky in that I have almost always gotten the assistive devices that I wanted.
Nowadays I use a smaller Tobii, which is closer to what I want. Because of it’s smaller size it’s better than the older models. But when I use it out in the sunlight, the sight control doesn’t work too well, and in the winter I have to put a scarf around Tobii so it doesn’t freeze. Tobii is not just a speech device, but it also has control functions, which I mentioned in the start. With Tobii I can surf the net, use Whatsapp and take pictures. With Tobii I also have a better working posture than with the Lightwriter. There is always room for improvement, but for me this is the perfect speech device… until they come up with one that functions through telepathy. I still have the Lightwriter just in case something happens to Tobii, but it’s not much use anymore since it’s battery is so bad nowadays.
”Hey, I’m here too!”
I have a piece of advice to people, who are speaking with a person who is using a communicative device, or some other form of AAC: be patient and wait. I am angered when people talk to my assistant instead of me. Sometimes I feel invisible and I just want to shout: ”Hey, I’m here too!”. Gladly I have noticed, that these days when I run errands on my own with my dog, people see and hear me better. But there are always people who make me feel invisible and run away when I ask for help. It’s easier to talk with children, because they are so curious. I get upset when parents tell their children not to stare or ask questions. The child does not learn if he or she cannot look, ask or try the communicative device.
Elina Ino has a support group for CP-children and their families. She keeps a blog and gives presentations. What kind of voice would you like to have for your voice-system? Normal, because …(more Elina’s views on our next meeting).
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.
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 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.
”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
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
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