Introduction to Illias Project

• According to World Report on Vision (World Health Organization, 2019), atleast 2.2 billion people have a vision impairment.
• Atleast 1 billion have vision impairment that can be addressed in some manner.
• Every year, it costs global economy over US$ 3 trillion in lost productivity, health, and social care.

Of course, these statistics say nothing about the lived experiences of the people with blindness and visual impairment. It says nothing about the loss of their quality of life, their subjective experiences, and the influence of this condition on the way they find meaning in life.

We care about the individual, not just the vision impairment as a concept.

We seek to understand exactly what issues the individuals with conditions related to visual impairment are facing. We acknowledge that every individual with visual impairment has a unique experience of life, and faces unique issues. We acknowledge that other socio-economic, cultural, communal, and geographic factors also play a huge role in their lived experiences.

We care about using our skills to help individuals enhance their subjective experience of life. Through our work, we do not aim to solve all problems of all people with visual impairment around the world. We want to solve precisely those problems which can be solved with our skill-set. We want to address one or two issues faced by individuals with visual impairment. More importantly, we want to address issues of those individuals who do not currently have access to the already existing solutions.

We aim to create a technology-based solution. Our solution will have 3 major principles at its core:

1. Individual centered technology: Acknowledging the individuality of experience.
2. Low cost affordable technology: Creating access
3. Technology that is actually practical and usable in real life.

There are a wide range of assistive technologies developed all around the world. I will be writing another blog post to give the overview of current existing technologies. However, for now, the major points to be noted are

1. Most of the technologies are developed by academic research departments of universities around the world.
2. Most technologies are in prototype stage and very few are commercially available.

Although, we began working on this project from the technological point of view, we have shifted our focus from understanding the shortcomings in the existing technologies to understanding the point of views of the individuals and then using technology to address these issues. This shift in our methodology is in line with the core values that underline this project, as discussed already.

Thus, currently, we are trying to understand the lived experiences reported by individuals all over the world, through interviews, case-studies, writings, and other mediums. The insights emerging from this kind of phenomenological study will form the basis of the technology that we are developing.

One of the major theme that has emerged is the strong desire felt by individuals to be independent. One of the most important factor which contributes to the feeling of dependence is the feeling of lack of mastery over the environment. Many individuals despise pity, have a strong desire to be treated normally, and even stronger desire to prove themselves. Sense of mastery over one’s environment leads to the feeling of self-confidence and autonomy. [efn_note]Trehan, K. (2018). Resilience among Adolescents with Visual Disabilities. Indian Journal of School Health & Wellbeing, 4(1), 53-62 [/efn_note]

Therefore, we are currently interested in developing technology which will lead to a better interaction between the individual and the environment. This technology ideally should equip the individual with a greater spatial understanding of the environment, overcoming the deficiency caused by the limited visual sense.

Sensory Substitution System: This technology converts information of one sense into stimulus of other sense. In this case, the idea is to convert visual information into acoustic or tactile stimulus. Using such a technology, the individual will be able to “hear” or “feel” that information which is generally percieved through sight.

While this idea seems exciting at a conceptual level, caution needs to be exercised when actual usability and functionality is considered. This project, though innovative to a certain degree, is certainly not meant to be a research experiment. It is meant to be practical in real world, and is meant to be useful to real individuals. So, the question that arises is simply: Is a Sensory Substitution System practical to be used and actually adding value to the life of the individuals?

And this is not the only problem with the general Sensory Substitution Systems. In one study [efn_note]Bakker, K., Steultjens, E., & Price, L. (2019). The lived experiences of adults with a visual impairment who experience fatigue when performing daily activities. British Journal of Occupational Therapy, 82(8), 485-492.[/efn_note], individuals with blindness and visual impairment have reported that they experience mental fatigue not just during activities requiring vision, but also during activities which predominantly do not rely on vision. For instance, one individual reported that a simple conversation in a group leads to mental fatigue because of the effort and concentration it requires to isolate and keep track of the many members participating in the conversation. Another individual reported mental fatigue while playing music in an orchestra, because of the lack of reliance on vision to keep track of the other musicians. Sensory Substitution technology may increase the overload on the already taxed senses.

(On a side note, the way this fatigue is dealt with by these individuals is by alternating activities requiring high concentration with low-concentration activities. In other cases, by simply giving up or replacing fatiguing activities, like leaving the professional orchestra to playing music in old-age homes.)

One important point to note is that the acoustic and the tactile senses are themselves very different, and are relied upon in different ways. In my opinion, while acoustic sense is always ‘switched on’ and relied upon continuously, the tactile sense is generally relied upon consciously, when the individual chooses to use it. Therefore, it is possible that the tactile sense may be better suited than acoustic sense for the purpose of sensory substitution.

Our next objective is thus to build a simple tactile sensory substitution device prototype. More on that in the upcoming posts.