With modern day communication technology sharing through email, social media and Skype it rarely encourages people to share the evolution of their project. We often list, number, bullet point, but seldom do we engage in informal discussions where we share knowledge and reflect. It’s in the reflection that we witness human capital being the driving force behind our projects. It’s worth taking a look at SoundSight, whose story has sparked curiosity in co-creating care solutions. There are many factors that determine the direction of our projects. For SoundSight it has been an ongoing commitment of the human capital to bring forward this project.Experiencing co-creation is a method to bring value to patients in a personalized way with the intention to benefit patients in coping with their health and enhance their quality of life. Looks as though co-creating is the road where the community is defining the destination, planning the journey and sharing the drive. Let’s hear from Irene”
“I can never thank the Reggio Emilia blind people union enough for accepting me in their community and interacting with me so sincerely and proactively. Let me say that 2 years ago I started spending some time with them, to enquire about their daily challenges, and to shadow some of them (who kindly volunteered) during their daily routines, I had conceived this as any other didactic activity of my university education, excitingly on the field, but not more special… how wrong could I have been!
Long story short, I had reached out as part of a design thinking exercise, after brainstorming with my colleagues over social and technical literature to find solutions to the challenge of blind people navigation through living environments, “simply” to extract narratives about what we thought their problem to be and, thus, tune our solutions… We had succeeded obtaining the information we wanted, we had lists of the defeating features of currently existing solutions, descriptions of use cases, but while working on the desired features, something started to emerge for some of us in the team: another narrative had been seeping through our conversations with the blind volunteers, that we did not consider in advance. Most of the blind people we had talked to, despite agreeing to the obstacles imposed by visual impairment, did not consider that a defining condition and were rather cold to any assistive technology they tested or we described. Instead, narratives of empowerment, education, disintermediation, were flowing through most of their replies, even when our conversations were explicitly biased towards solutions”.
Let this sink for a moment. And remember that the number one challenge of helping another person is falling in love with the solution one wants to offer, losing sight of the person in exchange for the problem.
So we asked Irene to recollect her most significant conversation for us:
IL (Irene Lanza): “Good morning Maria[ I would like to thank you already for your time… it is truly precious to me to be able to talk with you”
MBC (Mother of an 11years old blind child): “Good morning Irene. I have heard about you from my friends and fellows from the blind union… they say you are a very polite and smart girl”
IL: “Aww… how much will they ask me to pay, now? …haha”
MBC: “haha”
IL: “Did they also already tell you about what I would like to talk today?”
MBC: “vaguely… apparently, you are working on a new technology to assist blind people in their daily life…?”
IL: “That is fairly accurate, but luckily they did not spoil our fun by letting you in too many details. In facts, we are working at the proof-of-concept of a wearable device that could analyze the surroundings in real time and feed information about objects, their velocities, and positions to a visually impaired user, to allow him/her moving naturally through a living environment… our challenge is to allow a blind person to play a football game competitively against people with normal vision… well, we would still not provide talent though”
MBC: “So, are you thinking of something like those apps on the smartphones?”
IL: “Well, not really… we would have dedicated hardware, and we would like to collect your opinions about how to design the user interface… a smartphone app would be a proof-of-concept compared to the kind of product design we are pursuing”
MBC: “I don’t like this kind of assistive technology much… you never know it will let you down. So many factors: the signal may be lost, the battery may go down, the app could crash… what should I do then?”
IL: “This is exactly what I am here to listen to… you see, we will collect all these opinions, and try to prioritize features in our design concept… so, have you already tried some of those?”
MBC: “I am constantly exploring and searching for new tricks and tools that could help Mario, so I often talk about this topic with my friends at the union, and I try some them after reading their reviews or hearing their presentations. Most of them are quite far away from real life, for they are very specialized on single use cases, and they rely on infrastructural investments that in our Country are stagnating for too long already. Mario’s problems extend well beyond walking through an airport or a shopping mall or reading the label on a tomato can. The only tool I really find useful is the reader with vocal synthesis on the smartphone: it works pretty well and it’s so precious to be able to listen to any book when audiobooks are still not the norm…”
IL: “So could you tell me more about Mario’s experience? What do you think are the most commonplace barriers he experiences when going to school? How does he roam around?”
MBC: “He is training with the stick. Many people dislike it, but it is rather dependable and attracts sufficient attention to ensure that other people will be more cooperative and safely behaved. However everyday life can become very problematic. Architectures are often hiding traps that would surprise for the naivety of those who designed the spaces: you would never imagine the feeling of dread when you have just seen your son missing an unprotected element from a window, protruding out of a wall with its sharp corners… and the use of the spaces themselves can be even more challenging! Hanging wires, doors opening directly on stairs, elements built in non-shock-resistant glass. Many of these, if you ask me, would be dangerous to any child, but if you factor in the inability to forecast what you are going to meet next… The risk of bad practices escalates quickly!”
IL: “So school is not a safe haven for Mario…?”
MBC: “Not just that… most activities are not structured to include children like Mario. Schoolbooks are more difficult to find as eBooks for the vocal synthesizer than others. Even then, many graphics, whether didactic or there for testing purposes, remain inaccessible… and even the teachers, despite being adorable with Mario, are not informed about methods for inclusive teaching… For example, my husband is a musician, and he has always tried to exploit musical theory to organize our family games (she mocks for me a couple of games based on recognizing the tones, or what an object at home could be based on analogies of noises). We constantly try to use acoustics as a tool to explain concepts, and risks to our child…”
IL: “…and this, of course, doesn’t happen at school”
MBC: “Not even closely. School sometimes becomes a very frustrating experience… a place of isolation to remind Mario of his diversity. Irene, you are young, you must remember your lectures of geometry, for example…”
IL: “yes, indeed… mostly graphics are drawn on the blackboard… I see what you mean”
MBC: “even our language is geared for the idea that seeing is believing. Mario often tells me that he has seen a schoolmate with a certain outfit or some event that he is going to tell me about… he does enormously to find his place in society. And my husband and I do our maximum to help him surpass the social barriers: we teach him games that he can play with his friends, we accompany him to familiarize with the places where he will have to interact with his mates, and we drill into him, constantly, how to react to the unexpected, hoping that panic will never prevail. Technology, instead of these half-baked attempts at substituting vision for simple tasks, should take on education… there is so much more that is lost in our societies when one cannot see than just reading on a can whether it is tomato or green peas, and nurturing those skills that we all have as fellow humans, rather than focusing on what we lack, would be so much more empowering.”
IL: “what you say is very inspirational… so you believe education is the true mean of supporting Mario… and what is the place of technology in your vision?”
MBC: “we live in a time obsessed with technology, and we forget that it is just a tool. I have not hidden from you, I am not a big supporter of the idea. For example, we use the e-reader with voice synthesizer… the problem is extremely important, but not mission critical, and so the technical solution makes sense… I am not sure I would delegate to technology, or to other humans for what is worth it, many other things on a regular base… what would be the meaning of life, if you give up on the very experiences that make it worth sharing and living? We are social animals, someone more important than me said once…”
IL: “Maria, thank you really for letting me peer into your family life… and thank you for your kind guidance. I hope that we will be able to live to your expectations, but I can already promise you that we will at least try our best!”
MBC: “It has been my pleasure Irene, it is so nice to meet a young person trying with enthusiasm to tackle a problem we have to deal and cope with every day. I wish you the best of luck, and I look forward to hearing about your progress!”
When Irene went back to the team after this conversation, she was confused, for having just experienced the most confrontational conversation about their project. Irene was moved emotionally by the passion and interest expressed by the mother. An experience that would leave her forever changed and stretched.
With Irene insisting, a small group of three people from the original team started diverging from the original path of designing a wearable “small world” navigation system. They started brainstorming wildly about educational concepts.
Independently from the rest of the team, which opposed the need to bring to completion the academic assignment, they sought a new agreement with their mentor and started optimal thinking at 360º. Using 3D ultrasound-based haptic interfaces to offer interactive geometry education or simulators for practical tasks that would completely substitute visualization for acoustic and tactile feedbacks? Most of the early ideas were dropped when their mentor, or people not involved in the team that he suggested to talk to, would object other low-tech solutions (e.g.: wooden models for 3D geometry) could deliver almost the same experience, significantly undercutting the complexities of the projects.
It was during this naïve and intense search, that their mentor showed them a video of a blind person using tongue clicks to echolocate while biking (!!!). The rest, as they say, is history, and we will share with you a few details about the early testing in a next post… so follow us 
The challenges for the visually impaired are enormous, so immense are the ramifications for those now living without sight, and so exciting is the initiative on the horizon.
*To protect the privacy of individuals the names and identifying details have been changed. There was a brand indicated, which we discovered is trusted among the blind community, but we do not think it is relevant here.