A Thesis Blog

[souvikpaul89]

Ontology

Sorry for the dearth of posts lately. We've had our hands tied with works and lots and lots of writing for our thesis books. In an effort to refine our books further, we're to define the top ten terms that define our theses, to ensure that what we mean to say in our writing, is precisely what we end up saying. Without further ado, here are the top ten terms of Unbound: Psychophysical Design for Spinal Cord Injury and Disability.

Psychophysical

The branch of psychology that deals with the relationships between physical stimuli and resulting sensations and mental states.

This definition is taken from dictionary.com. The products that we interact with have psychic lives. There is an aspect of our interaction with them that transcends their function and begins to live in the place of memory and preference. Our favorite t-shirt, arm chair, bicycle, shoes, etc - things that we would never throw away, no matter how old and ratty and disgusting they've become, because of the history associated with them. They're usually associated with a specific memory or feeling that's tied to our past or our conception of who we want to be. I think that this is a trait that's pretty unique to products, which is one of the reasons that I wanted to become a product designer in the first place - it's hard to imagine having this kind of transcendent experience or relationship with an app or a service.

Spinal Cord Injury/Disability [SCI/D]

A spinal cord injury — damage to any part of the spinal cord or nerves at the end of the spinal canal — often causes permanent changes in strength, sensation and other body functions below the site of the injury.

If you’ve recently experienced a spinal cord injury, it might seem like every aspect of your life will be affected.

This definition is taken from the Mayo Clinic.

Disability

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.

Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.

This definition is taken from the World Health Organization. The WHO's definition of disability doesn't specify whether or not a disability is permanent or temporary; in fact, the WHO argues that most people will experience some form of disability within the course of their lives. Recontextualizing what we think disabilities actually mean is important in ultimately addressing the root causes of the social and environmental barriers that one might face with a disability. 

The difference between an impairment, an activity limitation and a participation restriction is one of scale and context. An impairment refers to the physical, biological reality of the disability - i.e. what is causing that disability. In the case of drinking alcohol and driving, the impairment is what prevents a person who is drunk from having enough coordination to drive. It is the actual level of alcohol in the brain that makes someone uncoordinated. The activity limitation is how that lack of coordination prevents someone from operating machinery, whereas the participation restriction refers to the specific laws and mores that prevent that person from driving - the social and legal rules built up around that specific situation which falls into the realm of governance.

Disabled

This is less of a definition and more of a decision with respect to diction. There are a lot of ways to refer to someone who has a mental, cognitive or physical impairment - "handicapped, handi-capable, disabled, differently-abled, and a person with a disability". For my thesis, I've made the decision to use the word "disabled" because I think that of the terms listed above, it is the least problematic with respect to politics and the lived experience. I understand why person with a disability or differently-abled are appealing terms; the former recognizes that a disability exists separately from the person and that the person in question isn't necessarily defined by their experience with disability. The latter seems to me to tiptoe around the question at hand to a more exaggerated degree than the former - and the question at hand is very succinctly summarized by Lawrence Carter-Long, who is quoted in the article that is linked above: 

"Perspective. In 2016, anyone who would dare to assert that race 'doesn't matter' or that they 'see the person not the gender' would instantly, and I think rightfully, be called out as either naive or ignorant. Similarly, to suggest disability is simply a 'difference' and has no impact on a person's life is a very privileged position to take. Most disabled people don't have that luxury. The assertion flies in the face of reality and minimizes the very real discrimination disabled people face."

I also think that using the word disabled has an effective corresponding term to refer to someone who is able-bodied. Using analogous language to refer to both sides of the ability binary helps establish some kind of parity between the two.

Abled

Otherwise known as someone who is able-bodied. I prefer this term to able-bodied because it helps to establish "responsibility" or the lack there of. If someone is "abled" that means that their ability has happened to them, it is something that they receive and have otherwise little say over. My status as an abled person is due to factors outside of my control, similar to how a disabled person is disabled due to factors outside of their control.

Paralysis

Complete or partial loss of function especially when involving the motion or sensation in a part of the body.

Loss of the ability to move.

A state of powerlessness or incapacity to act.

Definition taken from Merriam Webster. 

Ableism

Discrimination or prejudice against individuals with disabilities.

Definition from Merriam Webster.

Personhood

Also known as agency. This is the ability of a person to be self-determining, to take their fate into their own hands and to exercise control over their lives. Because of the traumatic nature of spinal cord injury, a person's sense of agency or personhood can be completely and irrevocably altered in the aftermath of their injury. A lot of the existing treatment paradigms for spinal cord injury and trauma ignore this aspect of the damage, or simply do too little to counter it. The crux of my thesis is that by structuring treatment of SCI/D to be empowering as opposed to restorative, we can help people with SCI/D regain their sense of personhood and agency. 

Normal

I was actually pretty surprised to go to Merriam Webster and find the following definitions for normal:

Usual or ordinary : not strange

Mentally and physically healthy

Of, relating to, or characterized by average intelligence or development

Free from mental disorder

It's hard to understand what average intelligence or development really means, or what physical health means in a country that has rapidly rising rates of obesity. This definition, seemingly innocuous, is indicative of how damaging a term like "normal" can be. Normal is a loaded term that has a lot of baggage associated with it - and is descriptive of a very narrow and arbitrary view of what normal is. If one doesn't fit into the standard definition of normal, as a disabled person might not, there are far-reaching implications for the social, political and economic prospects for that person. But what is normal really? Why is "normal" privileged above "abnormal"? Why is there a value judgment there that denies those who are and that which is different legitimacy?

Abnormal

Different from what is normal or average : unusual especially in a way that causes problems

Also taken from Merriam Webster. Abnormal is admittedly as loaded a term as normal, perhaps in a way that is much more explicit. There is a definite negative connotation to the word, and its inclusion here is as a counterpoint or foil to "normal".  Unless one fits into the standard definition of normal, there is something wrong with that person "especially in a way that causes problems". It's this mindset and point of view that is especially damaging to someone who has sustained a spinal cord injury and is faced with the prospect of living life in a wheelchair. It's this mindset and point of view that negatively impacts, or at the very least exacerbates the felt loss of, a person's agency and personhood after an SCI.

[souvikpaul89]

Design Empathy: My Time in a Wheelchair

Since Wednesday, I have had a loaner wheelchair from SVA in my possession. The chair was obtained through the school's film department, where they have a surplus of wheelchairs. Allan, our department chair, had originally put me in touch with the film department in the hopes of securing for me a wheelchair that I could modify - weld to, tear up, tear down, etc. This, of course, was way back in first semester, when we both thought that a wheelchair product would end up being part of my final portfolio of thesis designs in May. Now that my gears have shifted somewhat, I have no real need for a wheelchair for prototyping purposes, but I found myself arranging to borrow one of the film department's wheelchairs for a little over a week a little over a week ago. I think that part of me knew all along that my thesis wouldn't be complete without this exercise in empathy, especially because, back when my thesis was still in the research phase, I was told by at least one person that I interviewed that I should find a way to rent a wheelchair and go around New York City in it.

I will say with a hint of shame that I didn't expect this week to go by that much difficulty. I knew it would be hard - that goes without saying - but in the sense that biking 50 miles is hard. Biking that distance isn't a walk in the park by any means, but with enough determination, anyone could do it, even with relatively little training. That is not the case for using a wheelchair in New York City, and my presumption that it would be a relatively bearable affair reveals my implicit and possibly ableist bias.. There have only been one or two occasions that I've felt as physically drained as I have after coming home from school in a wheelchair, and the occasions that spring to mind and are in contention include summiting Mt. Judah off-trail in snowshoes and running my first half marathon while a little sleep-deprived. It is no joke, so much so that in writing this, I have no idea where to start describing what it's actually like to wheel around. 

The night that I got the wheelchair, it was raining quite heavily in New York. The streets were slick, and most curb cuts were at least partially submerged in murky, disgusting water. Those puddles, easily avoided when I walked around regularly, became the bane of my existence. Not only did they make the hand rims of my newly acquired chair absolutely disgusting [my hands were covered in filth by the end of my trip], I found that their prolonged and repeated presence over time had actually begun to erode the base of many curb cuts. What was left of the once smooth curb cuts was enough to force me to rely on the help of three strangers to get me over the curb cut, and to almost throw me out of my chair twice on the 4 avenue route home. In the rain, the visibility was poor, so I suppose that it should come as no surprise that I was also almost run over a the crosswalk by Gramercy Park by an inattentive driver. Fortunately, he realized his mistake in time and stopped before hitting me.

Since that first night, I have gotten more adept at getting around. I can successfully pop my front casters up and over insufficient curb cuts, rendering much more of the city accessible. It hasn't rained since that night, meaning that my hands are spared an unpleasant and unsavory wetness - though I have taken to wearing gloves almost all the time when I need to get from point A to point B in the chair. It is just a magnet for hair and dirt - I suspect the handrails are the culprit. I've been surprised by the kindness of others - there have been multiple occasions where complete strangers have gone out of their way to help me - whether it was to push/lift/pull me up the steps leading out of my inaccessible apartment, or to help unclip me from the bus when it's my stop. 

Speaking of the bus, I've ridden the bus more times in the past week than I have in the past 4 years of living in New York City. The bus is really the only way for me to get to school from my apartment. The subway station at 59th St - Columbus Circle is accessible, but the closest accessible stations to school are 34th St Penn Station and 14 St, meaning that I would have to wheel at least 7 streets before getting to school - and that's after wheeling 1 street and 2 avenues to get to the subway station in the first place. Since I get dead-tired after maybe 4 streets, this isn't really an option for me. Taking the bus means that I only need to wheel maybe 3.5 avenues, which is certainly quicker than the alternative.

Boarding buses hasn't been too bad; the new MTA buses [I say new without knowing exactly how new they are] are kneeling buses, so when I am waiting at the bus stop, the drivers know to stop in front of me, kneel the bus and let the ramp out to the street. The ascent onto the bus can be a little dicey - I find that I lose momentum halfway up, and have to grab the support rails on the bus. Then, once I'm onboard, I have to somehow turn around in an extremely narrow space [how narrow? I've had to ask passengers to move so that I could turn my chair around] so that it can be strapped into the handicap seating area. I'm extremely self conscious of this whole process, just because I know that I'm the reason that a routine bus stop has become a chore for the bus driver, and a delay for the fellow passengers. I also have only had to pay my fare once in the past week, out of 7 or 8 trips taken so far. The downside to the bus, of course, is the longer travel time. A commute that used to take me a mere 20 minutes door to door now takes me at least an hour during normal commuting times.

What I haven't gotten used to, however, is the tilt of New York City sidewalks. Almost imperceptible to the able bodied traveller walking down 5th Avenue, the streetward tilt of every New York City block becomes an urgent and pressing matter once you're traveling via wheelchair. Not only does a wheelchair user have to avoid trash, pet excrement, and bumps and cracks every step of the way, they also must pump significantly harder with one arm in order to avoid spilling out into the street, or into a tree planter [as I did today], or into a pile of trash, or into passersby, or into... This means that you're also traveling half as fast as you can normally, because you can and must only use one arm to wheel so as to counteract gravity. Muscles fatigue faster and stay tired longer. And this is coming from someone who considered himself in decent shape before attempting this, given his propensity for indoor bouldering. It sounds like it's not that bad, but this fact, and the sheer unevenness of the sidewalks, creating mini hills out of concrete where they have no business to be, make traveling even a block astoundingly tiring, one that results in an almost constant stream of expletives running from my mouth.  It makes something like carrying a cup of coffee a treacherous task.

Speaking of coffee, I went today to grab a cup of coffee from the shop across the street from school - which requires that disabled people call a number if they want to be let into the store, though today's weather permitted that the door be left open all day, making my unassisted entrance possible. A trip that normally takes me 5 minutes took me 10, despite two generous strangers helping me up and over a curb that I unsuccessfully tried to wheelie over. After I got my coffee, I had to gently travel halfway down the block to the nearest driveway and cross the street before coming back the way I came to enter my school building.  

It's this kind of experience - a mundane everyday task becoming a huge hassle - that really gets me down about my week [! imagine two weeks, or a month, or a year, or... a life] in a wheelchair. I've begun to sort of plan my days ahead of time in the attempt to minimize trips out of the department, to minimize blocks wheeled by myself. Sometimes I just don't want to go anywhere, knowing how newly difficult it is for me to get around. I find myself trying to gauge how far each push of the wheels takes me, and it's always surprising to me how slow I feel. I find myself asking my friends if they're slowing down because they're walking beside me.

What makes it worse is that people will either be, as my department chair was, unappreciative of just how hard wheeling around as a mode of transportation is - he, upon hearing that I'm only spending a week in the chair responded with an empathic "that's it??" - or overly sympathetic. A few classmates have expressed their pity for me as they follow me wheeling around the studio with their eyes. As much as I appreciate having people help me, and as restorative as that is of my faith in humanity, it still peeves me to ask for help - and I usually don't unless people offer first. I've noticed that when people look at me on the street, they tend to look at my chair and avoid eye contact, as if I'm nothing more to them than a wheelchair - though I wonder if this is just me feeling vulnerable and sensitive and projecting my expectations onto reality. 

Being in the wheelchair is also oddly painful. I try to lift myself out of my seat every once in a while, but I still get weird sensations - a stabbing pain through my chest from time to time, random pains in my abdomen, the feeling of a pulled groin - most of which I feel safe attributing to being confined to a seat all day. I've also sustained two blisters on my right hand through gloves because of how I grip the wheelchair wheels, and how hard I need to put to get over mini-hills or other obstacles. The whiny quality of this post is not lost upon me, and I can't help but think that while I can't wait to get out of the chair on Thursday, the users that my thesis aims to help are precisely those people who can't get out of the chair. Perhaps some of my woes would be alleviated by using an actual fitted wheelchair, but I think that the bulk of the obstacles would remain.

It's also astounding that wheelchair travel is so bad for me when I'm not really using a wheelchair in the bathroom [often I find myself standing to urinate, for the dual purpose of not having to lay down a nest of toilet paper around the toilet seat every time I need to urinate, but also to stretch my legs a little throughout the day] and when I'm at home in my apartment [using a wheelchair would render most parts of the apartment inaccessible - including the kitchen and the bathroom. I'm letting myself off easy, yet I'm still struggling immensely with this aspect of the project. As far as takeaways go, and transitions into actual designed objects, I think I will have to wait until the experience is over in order to gather some objective distance from my experience in a wheelchair, in order to effectively design for it. But then again, maybe that's something that I'm telling myself because I honestly don't have the energy for problem solving at the moment since all of it is used up getting from point A to point B.

[souvikpaul89]

Design Empathy: My Time in a Wheelchair

Since Wednesday, I have had a loaner wheelchair from SVA in my possession. The chair was obtained through the school's film department, where they have a surplus of wheelchairs. Allan, our department chair, had originally put me in touch with the film department in the hopes of securing for me a wheelchair that I could modify - weld to, tear up, tear down, etc. This, of course, was way back in first semester, when we both thought that a wheelchair product would end up being part of my final portfolio of thesis designs in May. Now that my gears have shifted somewhat, I have no real need for a wheelchair for prototyping purposes, but I found myself arranging to borrow one of the film department's wheelchairs for a little over a week a little over a week ago. I think that part of me knew all along that my thesis wouldn't be complete without this exercise in empathy, especially because, back when my thesis was still in the research phase, I was told by at least one person that I interviewed that I should find a way to rent a wheelchair and go around New York City in it.

I will say with a hint of shame that I didn't expect this week to go by that much difficulty. I knew it would be hard - that goes without saying - but in the sense that biking 50 miles is hard. Biking that distance isn't a walk in the park by any means, but with enough determination, anyone could do it, even with relatively little training. That is not the case for using a wheelchair in New York City, and my presumption that it would be a relatively bearable affair reveals my implicit and possibly ableist bias.. There have only been one or two occasions that I've felt as physically drained as I have after coming home from school in a wheelchair, and the occasions that spring to mind and are in contention include summiting Mt. Judah off-trail in snowshoes and running my first half marathon while a little sleep-deprived. It is no joke, so much so that in writing this, I have no idea where to start describing what it's actually like to wheel around. 

The night that I got the wheelchair, it was raining quite heavily in New York. The streets were slick, and most curb cuts were at least partially submerged in murky, disgusting water. Those puddles, easily avoided when I walked around regularly, became the bane of my existence. Not only did they make the hand rims of my newly acquired chair absolutely disgusting [my hands were covered in filth by the end of my trip], I found that their prolonged and repeated presence over time had actually begun to erode the base of many curb cuts. What was left of the once smooth curb cuts was enough to force me to rely on the help of three strangers to get me over the curb cut, and to almost throw me out of my chair twice on the 4 avenue route home. In the rain, the visibility was poor, so I suppose that it should come as no surprise that I was also almost run over a the crosswalk by Gramercy Park by an inattentive driver. Fortunately, he realized his mistake in time and stopped before hitting me.

Since that first night, I have gotten more adept at getting around. I can successfully pop my front casters up and over insufficient curb cuts, rendering much more of the city accessible. It hasn't rained since that night, meaning that my hands are spared an unpleasant and unsavory wetness - though I have taken to wearing gloves almost all the time when I need to get from point A to point B in the chair. It is just a magnet for hair and dirt - I suspect the handrails are the culprit. I've been surprised by the kindness of others - there have been multiple occasions where complete strangers have gone out of their way to help me - whether it was to push/lift/pull me up the steps leading out of my inaccessible apartment, or to help unclip me from the bus when it's my stop. 

Speaking of the bus, I've ridden the bus more times in the past week than I have in the past 4 years of living in New York City. The bus is really the only way for me to get to school from my apartment. The subway station at 59th St - Columbus Circle is accessible, but the closest accessible stations to school are 34th St Penn Station and 14 St, meaning that I would have to wheel at least 7 streets before getting to school - and that's after wheeling 1 street and 2 avenues to get to the subway station in the first place. Since I get dead-tired after maybe 4 streets, this isn't really an option for me. Taking the bus means that I only need to wheel maybe 3.5 avenues, which is certainly quicker than the alternative.

Boarding buses hasn't been too bad; the new MTA buses [I say new without knowing exactly how new they are] are kneeling buses, so when I am waiting at the bus stop, the drivers know to stop in front of me, kneel the bus and let the ramp out to the street. The ascent onto the bus can be a little dicey - I find that I lose momentum halfway up, and have to grab the support rails on the bus. Then, once I'm onboard, I have to somehow turn around in an extremely narrow space [how narrow? I've had to ask passengers to move so that I could turn my chair around] so that it can be strapped into the handicap seating area. I'm extremely self conscious of this whole process, just because I know that I'm the reason that a routine bus stop has become a chore for the bus driver, and a delay for the fellow passengers. I also have only had to pay my fare once in the past week, out of 7 or 8 trips taken so far. The downside to the bus, of course, is the longer travel time. A commute that used to take me a mere 20 minutes door to door now takes me at least an hour during normal commuting times.

What I haven't gotten used to, however, is the tilt of New York City sidewalks. Almost imperceptible to the able bodied traveller walking down 5th Avenue, the streetward tilt of every New York City block becomes an urgent and pressing matter once you're traveling via wheelchair. Not only does a wheelchair user have to avoid trash, pet excrement, and bumps and cracks every step of the way, they also must pump significantly harder with one arm in order to avoid spilling out into the street, or into a tree planter [as I did today], or into a pile of trash, or into passersby, or into... This means that you're also traveling half as fast as you can normally, because you can and must only use one arm to wheel so as to counteract gravity. Muscles fatigue faster and stay tired longer. And this is coming from someone who considered himself in decent shape before attempting this, given his propensity for indoor bouldering. It sounds like it's not that bad, but this fact, and the sheer unevenness of the sidewalks, creating mini hills out of concrete where they have no business to be, make traveling even a block astoundingly tiring, one that results in an almost constant stream of expletives running from my mouth.  It makes something like carrying a cup of coffee a treacherous task.

Speaking of coffee, I went today to grab a cup of coffee from the shop across the street from school - which requires that disabled people call a number if they want to be let into the store, though today's weather permitted that the door be left open all day, making my unassisted entrance possible. A trip that normally takes me 5 minutes took me 10, despite two generous strangers helping me up and over a curb that I unsuccessfully tried to wheelie over. After I got my coffee, I had to gently travel halfway down the block to the nearest driveway and cross the street before coming back the way I came to enter my school building.  

It's this kind of experience - a mundane everyday task becoming a huge hassle - that really gets me down about my week [! imagine two weeks, or a month, or a year, or... a life] in a wheelchair. I've begun to sort of plan my days ahead of time in the attempt to minimize trips out of the department, to minimize blocks wheeled by myself. Sometimes I just don't want to go anywhere, knowing how newly difficult it is for me to get around. I find myself trying to gauge how far each push of the wheels takes me, and it's always surprising to me how slow I feel. I find myself asking my friends if they're slowing down because they're walking beside me.

What makes it worse is that people will either be, as my department chair was, unappreciative of just how hard wheeling around as a mode of transportation is - he, upon hearing that I'm only spending a week in the chair responded with an empathic "that's it??" - or overly sympathetic. A few classmates have expressed their pity for me as they follow me wheeling around the studio with their eyes. As much as I appreciate having people help me, and as restorative as that is of my faith in humanity, it still peeves me to ask for help - and I usually don't unless people offer first. I've noticed that when people look at me on the street, they tend to look at my chair and avoid eye contact, as if I'm nothing more to them than a wheelchair - though I wonder if this is just me feeling vulnerable and sensitive and projecting my expectations onto reality. 

Being in the wheelchair is also oddly painful. I try to lift myself out of my seat every once in a while, but I still get weird sensations - a stabbing pain through my chest from time to time, random pains in my abdomen, the feeling of a pulled groin - most of which I feel safe attributing to being confined to a seat all day. I've also sustained two blisters on my right hand through gloves because of how I grip the wheelchair wheels, and how hard I need to put to get over mini-hills or other obstacles. The whiny quality of this post is not lost upon me, and I can't help but think that while I can't wait to get out of the chair on Thursday, the users that my thesis aims to help are precisely those people who can't get out of the chair. Perhaps some of my woes would be alleviated by using an actual fitted wheelchair, but I think that the bulk of the obstacles would remain.

It's also astounding that wheelchair travel is so bad for me when I'm not really using a wheelchair in the bathroom [often I find myself standing to urinate, for the dual purpose of not having to lay down a nest of toilet paper around the toilet seat every time I need to urinate, but also to stretch my legs a little throughout the day] and when I'm at home in my apartment [using a wheelchair would render most parts of the apartment inaccessible - including the kitchen and the bathroom. I'm letting myself off easy, yet I'm still struggling immensely with this aspect of the project. As far as takeaways go, and transitions into actual designed objects, I think I will have to wait until the experience is over in order to gather some objective distance from my experience in a wheelchair, in order to effectively design for it. But then again, maybe that's something that I'm telling myself because I honestly don't have the energy for problem solving at the moment since all of it is used up getting from point A to point B.

[souvikpaul89]

Thesis Offerings

Throughout the course of the semester, we've been asked at various points what our thesis framing statements are. The framing statement became a special point of emphasis in our Service Entrepreneurship class taught by Steven Dean. In this class, we were walked through the basics of conceptual modeling, a useful practice that, while tricky and time-consuming to nail down correctly, paid off large dividends once the modeling work has been completed. The act of modeling itself is one that is deliberate and needs to be taken step by step - and in this sense is a meta practice, being more concerned with the structure of structures, i.e. the design of structures of thought, of understanding, of knowledge, than with the design work itself.  The concept map below is the result of many, many iterations and many hours spent trying to distill Unbound into its constituent concepts with the aim of developing a lexicon marked by a certain economy of language that was still descriptive enough to avoid oversimplification. If the map seems simple when you read through it, I won't be offended; a good concept map makes the complex seem simple and somewhat obvious.

Laying out the territory of my thesis as I've done above makes it clear what I'm trying to do with the thesis, which personally felt like a huge benefit of completing this exercise. When I say that treatment is seen through the lens of restoration and not empowerment, I'm also making a statement about whether or not that same treatment is expert-led [which, in the case of my thesis, means anyone other than the patient is leading the treatment] or self-led. Now the point of my thesis isn't to write-off decades of medical advances and best practices, all in the name of advocating for patient rights and self-led treatment. Instead, I believe that there is a middle ground that allows for these two paradigms of treatment to be mutually reinforcing. It's within this middle ground where my thesis offerings are situated.

As the map outlines, there are currently four main offerings for my thesis, although in all honesty, I've been focusing on three primarily. The ugly duckling of the group is my thesis as a campaign. This is an idea from last semester that argued that people with disabilities are marginalized from society in a variety of ways, one of the most alarming of which is the inaccessibility of the justice system around New York City [many courthouses are inaccessible to someone in a wheelchair]. Taking inspiration from the history of vandalism and graffiti, I imagined what it would be like if disability activists took to the streets and forcibly pointed out instances of injustice and inaccessibility.

Journey refers to the app by the same name from first semester, which connects recently injured spinal cord patients to one another based on personality type and injury type. The motivation for this app came from the idea that sometimes, the best support comes from someone who is down in the trenches with you. It can be discouraging to only be in touch with experts - SCI/D veterans, healthcare professionals - and it can be isolating. Sometimes the person that you want to hear from and talk to the most is the person who is battling through the same struggle that you're battling through - a hunch of mine that has been confirmed by several memoirs of people with SCI/D. This idea has evolved in the past semester to involve an entire team of individuals which include spinal cord injury veterans who have been out of the hospital for years and have a lot of advice and perspective to offer the recently injured patient, as well as the patient's occupational therapist. This is a work in progress, so more on the development of the Journey app at a later date!

Test Drive, formerly known as Training Wheels, has remained unchanged. This is a wheelchair loaner service that replaces loaner chairs with used wheelchairs. The idea here is that loaner chairs and first wheelchairs are the two worst types of wheelchairs that a wheelchair user will ever use, mostly because of two things. The first is that the loaner chair is practically generic - the hospital doesn't have that many loaner chairs on hand, so what the patient figuratively sees is what the patient gets. The wheelchair user doesn't, or rather, can't develop expertise in wheelchair handling in the loaner chair because it is a poorly fitted wheelchair; because of this, most recently injured SCI/D patients will order a custom wheelchair with the help of their occupational therapist very soon after leaving the hospital, in order to leave the loaner chair as soon as possible. But what if the loaner chair experience could be improved? Instead of borrowing the loaner chair from the hospital, what if the patient could be fitted for a used wheelchair bought from an SCI/D veteran? They could spend more time in that chair - instead of 2 to 3 months, which is the normal amount of time spent in the loaner chair, it could look more like 6 to 9 months - and develop their wheelchair handling skills much faster. Down the line, they'll know more specifically what kind of a wheelchair is best suited to their idiosyncratic need, which is an improvement over the current system where patients often end up with a poorly fitting wheelchair, made all the worse by the fact that insurance only covers a new wheelchair every five years.

Thesis as product has morphed quite a bit. Gone is the rollable ramp - an interesting idea whose interaction with the user made no sense. In order to use the ramp, a user would have to reach behind him or her, grab the ramp, unfurl it, roll over it, and bend over, pick it up and roll it up again. The amount of upper body strength and stability that this requires almost guarantees that the user will have enough strength to pop a wheelie in order to travel over obstructions. As far as the other product that I developed - the bluetooth incontinence implant - goes, it's a bit tricky designing a product that normally takes 5 to 10 years to develop. At the suggestion of my department chair, I chose to focus on incontinence and bowel movements more broadly. By returning to my users and interviewing them, I found a real need for two things - a convenient and easy way to sterilize catheters for reuse, and an overall more humanely designed suite of objects that help the SCI/D patient defecate in the absence of bowel control.

But more on that later.

[souvikpaul89]

Thesis Offerings

Throughout the course of the semester, we've been asked at various points what our thesis framing statements are. The framing statement became a special point of emphasis in our Service Entrepreneurship class taught by Steven Dean. In this class, we were walked through the basics of conceptual modeling, a useful practice that, while tricky and time-consuming to nail down correctly, paid off large dividends once the modeling work has been completed. The act of modeling itself is one that is deliberate and needs to be taken step by step - and in this sense is a meta practice, being more concerned with the structure of structures, i.e. the design of structures of thought, of understanding, of knowledge, than with the design work itself.  The concept map below is the result of many, many iterations and many hours spent trying to distill Unbound into its constituent concepts with the aim of developing a lexicon marked by a certain economy of language that was still descriptive enough to avoid oversimplification. If the map seems simple when you read through it, I won't be offended; a good concept map makes the complex seem simple and somewhat obvious.

Laying out the territory of my thesis as I've done above makes it clear what I'm trying to do with the thesis, which personally felt like a huge benefit of completing this exercise. When I say that treatment is seen through the lens of restoration and not empowerment, I'm also making a statement about whether or not that same treatment is expert-led [which, in the case of my thesis, means anyone other than the patient is leading the treatment] or self-led. Now the point of my thesis isn't to write-off decades of medical advances and best practices, all in the name of advocating for patient rights and self-led treatment. Instead, I believe that there is a middle ground that allows for these two paradigms of treatment to be mutually reinforcing. It's within this middle ground where my thesis offerings are situated.

As the map outlines, there are currently four main offerings for my thesis, although in all honesty, I've been focusing on three primarily. The ugly duckling of the group is my thesis as a campaign. This is an idea from last semester that argued that people with disabilities are marginalized from society in a variety of ways, one of the most alarming of which is the inaccessibility of the justice system around New York City [many courthouses are inaccessible to someone in a wheelchair]. Taking inspiration from the history of vandalism and graffiti, I imagined what it would be like if disability activists took to the streets and forcibly pointed out instances of injustice and inaccessibility.

Journey refers to the app by the same name from first semester, which connects recently injured spinal cord patients to one another based on personality type and injury type. The motivation for this app came from the idea that sometimes, the best support comes from someone who is down in the trenches with you. It can be discouraging to only be in touch with experts - SCI/D veterans, healthcare professionals - and it can be isolating. Sometimes the person that you want to hear from and talk to the most is the person who is battling through the same struggle that you're battling through - a hunch of mine that has been confirmed by several memoirs of people with SCI/D. This idea has evolved in the past semester to involve an entire team of individuals which include spinal cord injury veterans who have been out of the hospital for years and have a lot of advice and perspective to offer the recently injured patient, as well as the patient's occupational therapist. This is a work in progress, so more on the development of the Journey app at a later date!

Test Drive, formerly known as Training Wheels, has remained unchanged. This is a wheelchair loaner service that replaces loaner chairs with used wheelchairs. The idea here is that loaner chairs and first wheelchairs are the two worst types of wheelchairs that a wheelchair user will ever use, mostly because of two things. The first is that the loaner chair is practically generic - the hospital doesn't have that many loaner chairs on hand, so what the patient figuratively sees is what the patient gets. The wheelchair user doesn't, or rather, can't develop expertise in wheelchair handling in the loaner chair because it is a poorly fitted wheelchair; because of this, most recently injured SCI/D patients will order a custom wheelchair with the help of their occupational therapist very soon after leaving the hospital, in order to leave the loaner chair as soon as possible. But what if the loaner chair experience could be improved? Instead of borrowing the loaner chair from the hospital, what if the patient could be fitted for a used wheelchair bought from an SCI/D veteran? They could spend more time in that chair - instead of 2 to 3 months, which is the normal amount of time spent in the loaner chair, it could look more like 6 to 9 months - and develop their wheelchair handling skills much faster. Down the line, they'll know more specifically what kind of a wheelchair is best suited to their idiosyncratic need, which is an improvement over the current system where patients often end up with a poorly fitting wheelchair, made all the worse by the fact that insurance only covers a new wheelchair every five years.

Thesis as product has morphed quite a bit. Gone is the rollable ramp - an interesting idea whose interaction with the user made no sense. In order to use the ramp, a user would have to reach behind him or her, grab the ramp, unfurl it, roll over it, and bend over, pick it up and roll it up again. The amount of upper body strength and stability that this requires almost guarantees that the user will have enough strength to pop a wheelie in order to travel over obstructions. As far as the other product that I developed - the bluetooth incontinence implant - goes, it's a bit tricky designing a product that normally takes 5 to 10 years to develop. At the suggestion of my department chair, I chose to focus on incontinence and bowel movements more broadly. By returning to my users and interviewing them, I found a real need for two things - a convenient and easy way to sterilize catheters for reuse, and an overall more humanely designed suite of objects that help the SCI/D patient defecate in the absence of bowel control.

But more on that later.

[souvikpaul89]

Emic + Etic = Emtic

Something that I've been struggling with in the course of developing my thesis has been the concept of emic and etic and where my thesis experience fits into this binary positioning. For the unfamiliar, these terms come from the field of cultural anthropology, and refer to the positioning of the investigator, or in this case, thesis-er, with respect to the population that he or she is investigating. The form of investigation can take many forms, and in my case, the investigation that I'm in the process of completing is design. There are many dichotomies that can be used to position the two terms relative to each other: insider-outsider; cultural-scientific; subjective-objective. An emic account is one that is observed from within the culture, within the subject of observation. An emic observer brings into play the biases and cultural norms inherent in the very object of study. By contrast, an etic account describes the object of study from without, with a very deliberate aim of describing things impartially, as they are, sans bias. 

As I've been designing products, experiences, apps and services [more on those later], I've, at times, taken a step back to try to understand exactly what it is that I'm doing as a designer designing for a community that I'm not a part of. The grounding statement of my thesis, the "thesis of my thesis", is "when a person sustains a spinal cord injury, their treatment is ableist and is seen through a lens of restoration as opposed to empowerment". Essentially, and bluntly put, walking is a sign to society as a whole that a person is "normal", and this point of view, this automatic categorization of wheelchairs as "abnormal" seeps into how treatment is framed. If we use products for people with SCI/D as an example, one could easily critique the current wheelchair industry for almost wholly borrowing its aesthetic from performance bikes, even though we're talking about a class of objects that restore mobility to the population that it serves. We put so much attention as people into the clothes that we wear and the aesthetic that we embody through our consumption choices, yet wheelchairs are distinctly "of a type", forcing wheelchair users to embody the same "product identity" as one another. If we return to the example of bicycles, it's easy to observe stylistic differences between bike companies, and even within the same bicycle company. Why doesn't this exist in wheelchairs? I posit that it is because wheelchairs are seen as a tool for recovery, and not, simultaneously, a tool for expression. Explanation aside, one of the tenets of my thesis that derives from this grounding statement is that a lot of treatment for SCI/D is "expert-led", and not "self-led" by the patient [again, more on this later]. 

So - where does my thesis fall? There is a huge irony in the fact that I am a person without a SCI/D that is designing for the SCI/D community with the stated goal of making treatment of SCI/D more "self-led". It's an unavoidable question, and perhaps one without an answer. In my time spent reflecting on the meta quandaries of my design work, I've come to a detente of sorts. Design is a user-centered process that relies on many of the tools of cultural anthropology [ethnography, interview, survey], which is in fact where I first stumbled onto this idea of emic and etic. After all, empathy, as they say, is the primary tool in the designer's toolkit. So perhaps it's empathy that drives my etic exploration of design for paralysis and disability, allowing me to channel the needs and desires of my users to create something that is "self-led" in concept instead of in practice. But more than that, I think my investment in the SCI/D community as the friend and supporter of someone with an SCI/D lends me a unique position that is more 'emtic' than emic or etic. That being said, I need to be careful that I keep the needs of the SCI/D community in mind, rather than imposing my etic assumptions about the community and the people within it on my design work. My work needs to always return to the user.

[souvikpaul89]

Dystopian Newspapers

As a follow-up to the speculative product assignment, we were tasked with creating a newspaper of the future, to fully flesh out the sociopolitical context of the worlds that we were imagining through the articles found on the front page of the newspaper. Opposite the front page is always a full page ad, giving us an opportunity to create an advertisement related to the product that we created. At first, I struggled with this assignment, realizing that the idea of a newspaper in the year 2075 was surely a conceit - in a world with bionic implants and devastating environmental damage from global warming, what place would there be for printed newspapers?

I decided to frame newspapers as the ultimate luxury good - only the extremely wealthy would have the leisure time and disposable income to afford printed newspapers. I wanted to develop the idea of having bionic eyes, though, so I created a backstory about how the extremely wealthy employ people in poverty as servants in their houses - accessible to people without bionic implants only through rear entrances with multiple security checks. It would be bad news, then, if someone from the servant class stumbled onto a copy of the newspaper, left lying around the mansion that they were cleaning, especially if it depicted the true dystopian state of the world.

I realized that the newspapers would have to be covered with false news stories, saying that the world was in order, and that the billionaire philanthropists that ruled the cities were responsible for the order in the world. The backpage advertisement was made by a firm called Securitas, a security company who looks after the world, so everyone else doesn't have to - projecting a sense of security over the non-bionic reader of the newspaper. Articles paint a picture of the United States as very strongly positioned in the world - as a Cold War-era superpower where its dominance is unquestioned. At the same time, there are a number of articles that evoke a sense of external threat - terrorists attacking the Keystone Pipeline, "Greater Russia" expanding westward over Europe - that would compel, somewhat heavy handedly - members of the impoverished parts of society to want to maintain the domestic status quo in order to maintain the country's strength for struggles abroad. Meanwhile, truths that couldn't be masked - such as the prevalence of acid rain in an environmentally ruined world or the rise in sea levels forcing the abandonment of the Hawaiian Islands - were reflected in the newspaper, in articles and in the forecast.

I rewrote the articles afterwards to fit the reality of the dystopian world - the real news that only people with bionic eyes could see. Their eyes would register the tiny QR codes found on the corner of each page and the information would automatically change to reflect what was really happening. Instead of terrorists plotting to destroy the pipeline, it had run dry, forcing government officials to demolish it. Separatist groups on Hawaii are the reason for the "nuclear tests" on the "deserted" islands; the US-Mexico border will soon feature a wall that the United States builds for Mexico in a desperate search for jobs for elements of its society that might otherwise foment revolution. Food is running out, and the US and Russia sign a non-aggression pact. As far as the advertisement goes, the Securitas ad turns out to be an ad for bionic eyes.

I created a movie in Adobe AfterEffects to simulate the newspaper's transformation. This was a bit of a challenge as I had never used AfterEffects before, but with the help of a few classmates, I was able to get the movie working. I intended for this to be used with a device such as Google Cardboard, and even mocked together a "hacked-together" looking version, that I was going to convince my instructor was a hacked object similar to the grappling hook that I created, allowing the "disabled" class to look through the newspaper's deception. The Google Cardboard that I made lacked lenses to bring the screen into focus; and the department's Cardboard somehow switched the position of the advertisement and the front page, I think due to the stereoscopic processing of the image. The video itself is really quick - a glitch effect to show the user that something was happening [and to add to the effect that the object making this possible was hacked together] and a few text animations and image animations to show the transformation.

[souvikpaul89]

Dystopian Newspapers

As a follow-up to the speculative product assignment, we were tasked with creating a newspaper of the future, to fully flesh out the sociopolitical context of the worlds that we were imagining through the articles found on the front page of the newspaper. Opposite the front page is always a full page ad, giving us an opportunity to create an advertisement related to the product that we created. At first, I struggled with this assignment, realizing that the idea of a newspaper in the year 2075 was surely a conceit - in a world with bionic implants and devastating environmental damage from global warming, what place would there be for printed newspapers?

I decided to frame newspapers as the ultimate luxury good - only the extremely wealthy would have the leisure time and disposable income to afford printed newspapers. I wanted to develop the idea of having bionic eyes, though, so I created a backstory about how the extremely wealthy employ people in poverty as servants in their houses - accessible to people without bionic implants only through rear entrances with multiple security checks. It would be bad news, then, if someone from the servant class stumbled onto a copy of the newspaper, left lying around the mansion that they were cleaning, especially if it depicted the true dystopian state of the world.

I realized that the newspapers would have to be covered with false news stories, saying that the world was in order, and that the billionaire philanthropists that ruled the cities were responsible for the order in the world. The backpage advertisement was made by a firm called Securitas, a security company who looks after the world, so everyone else doesn't have to - projecting a sense of security over the non-bionic reader of the newspaper. Articles paint a picture of the United States as very strongly positioned in the world - as a Cold War-era superpower where its dominance is unquestioned. At the same time, there are a number of articles that evoke a sense of external threat - terrorists attacking the Keystone Pipeline, "Greater Russia" expanding westward over Europe - that would compel, somewhat heavy handedly - members of the impoverished parts of society to want to maintain the domestic status quo in order to maintain the country's strength for struggles abroad. Meanwhile, truths that couldn't be masked - such as the prevalence of acid rain in an environmentally ruined world or the rise in sea levels forcing the abandonment of the Hawaiian Islands - were reflected in the newspaper, in articles and in the forecast.

I rewrote the articles afterwards to fit the reality of the dystopian world - the real news that only people with bionic eyes could see. Their eyes would register the tiny QR codes found on the corner of each page and the information would automatically change to reflect what was really happening. Instead of terrorists plotting to destroy the pipeline, it had run dry, forcing government officials to demolish it. Separatist groups on Hawaii are the reason for the "nuclear tests" on the "deserted" islands; the US-Mexico border will soon feature a wall that the United States builds for Mexico in a desperate search for jobs for elements of its society that might otherwise foment revolution. Food is running out, and the US and Russia sign a non-aggression pact. As far as the advertisement goes, the Securitas ad turns out to be an ad for bionic eyes.

I created a movie in Adobe AfterEffects to simulate the newspaper's transformation. This was a bit of a challenge as I had never used AfterEffects before, but with the help of a few classmates, I was able to get the movie working. I intended for this to be used with a device such as Google Cardboard, and even mocked together a "hacked-together" looking version, that I was going to convince my instructor was a hacked object similar to the grappling hook that I created, allowing the "disabled" class to look through the newspaper's deception. The Google Cardboard that I made lacked lenses to bring the screen into focus; and the department's Cardboard somehow switched the position of the advertisement and the front page, I think due to the stereoscopic processing of the image. The video itself is really quick - a glitch effect to show the user that something was happening [and to add to the effect that the object making this possible was hacked together] and a few text animations and image animations to show the transformation.

[souvikpaul89]

Futuring: a Dystopian Product

Futuring scenarios without the accompanying product or model misses the point. The idea behind futuring isn't merely to craft stories - there are enough astounding writers in the world, particularly those who write science fiction, who craft entire worlds out of words without needing to add futuring designers to the mix. It is the product that makes the futuring exercise real. It takes the otherwise fictional scenario and lends it a realness, a tangibility that has to be taken seriously. The product separates futuring from fiction. The reason that design is so well poised for the task of confronting people with visions of possible futures that scare and shock us into contemplation and eventually action is because design, whether it is graphic, product or anything in between, outputs real objects and things used in everyday contexts, and so, designers have the power of making anything look real.

Take my product for this most recent futuring exercise. Per the requirements of the course assignment, we were to develop a product model and accompanying sketches for one of the scenarios that we created. I personally chose to create my model for the dystopian scenario that I crafted - for the reasons elucidated earlier about how there exist more parallels between the modern world and my dystopian scenario than do between the modern world and my utopian one. And so I created a grappling hook.

I reasoned that if the poor are truly disenfranchised, and are excluded from entire sections of the city because of their lack of biomodifications, it would only be a matter of time before they began salvaging parts together to counteract this inequity. As the story hinted, a revolution would form, a movement to take back parts of the city. I designed one of the tools necessary to cross the physical boundaries of the world of the wealthy.

[souvikpaul89]

In my dystopian scenario, I chose to focus once more on the theme of disability activism - a concept that I touched upon briefly in my co-designing futuring workshops before a more thorough exploration during the “thesis as a campaign” design sprint from the first semester. Additionally, the documentary “Fixed: The Science Fiction of Human Enhancement”, which I had the pleasure of watching in the name of thesis research, delves into the ethics of the practice of biomodification - whether the practice will eventually create a class of disenfranchised individuals, and whether it is a not-so-subtle indication to people with disabilities that they need to be “fixed”. 

I believed that in 2075, the state and technology of biomodification will have advanced to a point where natural human beings are considered disabled, and disability becomes an economic state, and not a physical, mental or communicative one. With this backdrop , this scenario follows a young man who is a member of the disenfranchised urban poor, but is on the verge of turning his back on his fellow revolutionaries who conspire to take their equality back by force. 

This scenario is more fleshed out than the utopian one, if only because of two facts - first, dystopias provide more friction for the mind to latch onto - more details that need explaining, more conflict that needs resolving; second, this particular dystopian future has more in common with the present than the utopian one. Saying this may verge on hyperbole, but I believe that as a society, we’re much closer to this dystopia than we are to the utopia. Because of this, the products and services and apps that I design for my thesis will have much more in common with this story than the other one, and will in many ways be logical predecessors to the products, service and apps described in the scenario. Without further ado:

It was dark as Stefan walked through the innercity. The reflection of the innercity lights bounced off of the pools of water that filled the countless potholes that littered the road. A moist, heavy, damp smell lingered in the air, as Stefan nervously made his way through an intricate series of alleyways. He checked his personal, a device that was barely more conspicuous than a crumpled up piece of plastic in his pocket. The tattered edges and faded glow of the flexible screen signaled that he was in dire need of a replacement, but Stefan simply could not afford it. Not if he wanted to be able to finally afford the body mod that would change everything.

It was hard living with a biopure body. Needing light to navigate, steps to change elevation. It was hard knowing that even if you had lived your entire life in a place, there would be broad sections of it that were literally out of reach, because you couldn’t afford the mods that would make the buildings accessible. It was odd to live in a world where money and wealth translated so directly into access, where one needed to shell out cash for the operations that would help them surpass their biology. Through the Light, Stefan had learned about the disability movement of the late 20th century; how people banded together to ensure that disabled people had rights and were not excluded from their environment and therefore their society because of the fact that they had a disability. What they would think if they could see the world now, where physical and mental disability had become synonymous with physical and mental normalcy. By virtue of being born, you were cut off, and it was only money that could save you - money for the operations, for the exoskeletons, for the software, for the implants and for the prostheses. Here in the innercity, there weren’t many options at all for people like Stefan. The United States’ feeble attempts at universal healthcare under the Obama administration were derailed when the demagogue Trump assumed power just under 60 years prior. Once he got in, he dismantled any attempt that liberals had made to make society better. What was even worse was his refusal to leave. Having squandered the States’ military on feeble, ill-informed attempts to topple the many headed hydra that was ISIS, Trump made the bold move to declare emergency powers after the 5th of what would be many terrorist attacks made on US soil. Desperately looking for money, he sold off parts of the government to corporations, creating a government that was more commercial than it was civic. 

Stefan shook his head in frustration - he knew that the account of history that he learned with the Light was probably biased and incomplete, but for the life of him, he could not imagine any other explanation of the circumstances that he found himself in. It was so seductive, the history that they told, and the plans that the Light had to take back society, to take back the government. The leadership had planned a series of demonstrations - attacks was probably a better word for it - in the dark neighborhoods, the places that were out of reach for mere mortals in this day and age. The target was an abandoned high-rise building, high enough that there would be enough light for biopures to be able to see without artificial lighting. It was hard to find a place like this, these days, with the environmental damage of the 21st century sending the world into gloom. The people who mattered didn’t care about the gloom because they could afford eyes that could cut through and filter the smog.

Of course, the fact that biopures like Stefan could see in this place meant that it was a lot harder to access - such were the compromises that biopures were forced to make on a daily basis. The plan called for the physical modification of the building that the biopures would occupy, enabling their access and eventual habitation of the building. From here, they would strike out to other abandoned buildings, eventually building up a substantial base from which they would physically remold and remodel society to be a more equitable, accessible place. They would arm themselves with what seemed to be ancient military tech - so old that it snuck under the radar in terms of current day security measures. The flash bangs would only used as a contingency, hopefully blinding the hyper-sensitive eyes of any security forces that came in pursuit. Once stunned, the Light forces could harvest the mods from any unfortunate souls who fell into their grasp. Grisly work.

But that fight wasn’t for him. After years of searching, Stefan had found a way to get a mod through an unlicensed supplier. It was risky and extremely illegal, but he’d be able to actually afford one, a major one. He’d start with a cerebral implant, increasing his memory and processing power. He wouldn’t be as smart as was technologically possible, but he’d have an edge to his peers down in the innercity. And with that, he’d be able to get a better job, and he’d be able to save up and eventually afford his next mod, and the one after that, until finally he’d be up to date, with the latest hardware and OS. He’d eventually be able to buy a new life and leave this hellhole behind him. The darkness would greet him warmly. In a world like this, he reasoned, it was every man for himself.

[souvikpaul89]

3DPD2 and Product Development

I'm taking a break from talking about my thesis experience to talk about 3D Product Development 2, affectionately known as 3DPD2. This class begins speculatively with a futuring assignment that ultimately gets distilled down into the core product offerings of our thesis. Today, I'll talk about the first stage of this class, where we were assigned to write two scenarios for the year 2075 - one dystopian as it relates to our thesis, and the other utopian. 

Design thinking is in vogue, being used in more contexts than ever, with periodicals constantly heralding this epoch in business as the age of design, and championing job titles such as Chief Design Executive. While this certainly makes now an interesting and exciting time to be a design student, it also incorrectly suggests that design thinking is the only methodology with which to approach product design. Sometimes, though, it's just as important to identify where society ought to be in the future as it is to identify where it is now. For those cases, futuring is a useful tool and design methodology.

Futuring, as mentioned earlier and applied in the co-futuring workshops conducted in the fall semester, involves creating scenarios for future societies, and designing for these scenarios. Futuring relies on the power of storytelling, and uses the tactility of physical product models to sow seeds of thought and contemplation in people who handle those objects. There's a sense of reality when you're holding a product that supposedly exists in the world of the future that makes you seriously consider whether or not that's a world that you want to live in. For the class 3D Product Development 2 at Products of Design, we're expected to use this approach to develop new perspectives on our thesis and our thesis product development, which, up until this point, has relied on design thinking and user-centered design.

For the class, we were asked to develop two scenarios, both of which take place in the year 2075, both somehow related to our thesis. For my stories, I decided to try to challenge notions of what disability entails. In the utopian scenario, science has progressed to a point where disability is thought of as something as temporary as a cold. Just as we don't give a person who sneezes on the subway a second glance [other than to make sure that we didn't just get sneezed on], so too are people in wheelchairs not pitied or gawked at in this future world. In depicting disability in this nature, I'm taking the World Health Organization's definition of disability as affecting different people in different contexts for different periods of time to its logical conclusion. More important that the technology featured or hinted at in the story was the attitude towards disability - the acceptance of it. Of course, it is easier to be glib about a disability if you know that it is temporary and not life-changing, but being able to think about disability, specifically someone else's disability, in terms that are neutral and don't deny the humanity of the person with the disability is what I was concerned with.

Without further ado, my utopian disability scenario in 2075:

Her mom had always told her that mountain biking was dangerous. “You’ll fall off your bike and break your neck and die!”, she’d always warned. “Well,” Helfand, thought to herself as she lay there in a copse, just past the small hill, the jump off of which whose landing she totally mangled, “I’ll never hear the end of it”. She felt the moisture of the soil, still damp from the morning dew and slightly burning because of the dew’s acidity, on her cheek and the smell of slightly stale and sulfurous dirt in her nostrils. She was lying face down, partially because her legs wouldn’t obey her commands to move, and realizing that the odd, asynchronous sensation of thinking, feeling that her legs were bent and together when they were in actuality straight and apart, meant that she was probably paralyzed. Again.

Knowing herself and her slight hypochondria, Helfand didn’t waste time after landing using Jobs, her AI to contact the paramedics to perform thorough diagnostics on her body. It was probably redundant on many levels to even contact the paramedics in the first place, or to perform the diagnostics - Jobs would’ve known that she was out mountain biking, and he would’ve also known to monitor her biometrics and telemetry more minutely than usual. He probably knew how she would land even seconds before she took the jump, and had probably already started contacting emergency medical services as she took off; the ambulance probably mobilized at the apex of her jump; and wasn’t that distant sound now the sound of footsteps running towards her from uphill? Jobs would’ve also given her emergency medical advice if her situation was really dire, and would have begun to perform emergency procedures through the embedded tech in her clothing. Helfand still wanted to know though, and if the jump hadn’t killed her, then certainly curiosity wouldn’t be nearly as dangerous.

Jobs told her dispassionately, in an almost bored way, that she had fractured her T2/T3 vertebrae and completely severed her spinal cord, that she shouldn’t really move around, though with the ETA of the medical team being the 3 minutes that it was and with the nanobots in her bloodstream already digesting the shattered bone and rebuilding the ripped myelin sheath around her spinal cord, she really couldn’t do much to damage her body further in that time. Her prognosis was good, 1 day bedrest, 2 days with chair-provided mobility to stabilize her cord and to introduce the stem cell cultures that would eventually regrow it, 2 days in an exoskeleton to stretch out her lower limbs, which would be sore and weak from lack of use for 3 days. Her nanobots would take care of all of her autonomic functioning, and had enough processing power to track her bladder and bowels, and let her know when it was time to use the restroom. After her 5 days, she’d be off, out and about, walking and talking.

“Well then,” Helfand thought, “maybe Mom won’t find out about this after all”.

-

A week later, Helfand walked out of the hospital, a smile on her face. The doctors and staff were incredibly nice to her, and made her stay and follow-up appointments extremely pleasant. Despite the fact that spinal cord injuries, historically somewhat a rare type of injury, were rarer now than ever thanks to autonomous vehicles and an overall lack of motor vehicle accidents, the procedure for dealing with even the most severe cases of spinal cord injury, including internal decapitation, were so routine that her doctors were more fascinated than worried. 

Helfand usually didn’t like to sit still for as long as her recovery mandated her to, but she used the opportunity to catch up on movies that she hadn’t seen. Moving around with a chair was interesting, mostly because of the new vantage point. A few people had curious looks and asked her politely about her injury, having seen her in the chair, a rare sight, but most people didn’t even seem to notice. Her friends joked around with her about her height, saying that she was practically the same size sitting in the chair as she was standing, no one really worried at all, already planning the next adventure. The exoskeleton was a bit more uncomfortable, coming as they did in the form of tights when it was summer outside - Helfand always enjoyed the breeze on her skin, and that sensation was part of the reason that she adored mountain biking so much. Now that she was fully recovered, it was just about time to go back to that mountain and try that jump again. Helfand hated leaving a trail unconquered.

[souvikpaul89]

Meditations of Paralysis

As promised, here is the post about designing a postcard for my intended thesis event - a yoga session for able-bodied and disabled participants alike, with audio recordings of people reflecting on what their experience is like with the sensation of paralysis. Participants are expected to leave the event with a better understanding of their own bodies as a result of this visceral experience that is both within [the yoga itself, and the breathing associated with it] and without [the personal nature of the recordings]. For our second class of Design Delight, we were expected to come up with a postcard that informed people about the nature of the event.

After deciding to focus my thesis event on yoga, I thought I had it easy. There's just so much iconography and visual language to explore when it comes to yoga. I quickly rejected using stereotypical yoga pictures of silhouettes against a magnificent sunrise in some beautiful natural landscape, untouched by technology. Aside from their emphasis on the able-bodied practice of yoga, I knew that I wanted to design something more significant and thoughtful for the postcard, which was meant to be [according to the design brief from our instructor] the type of thing that a participant would buy in the gift shop of the event in order to tell friends about it. I felt like this was at odds with the introspective and thoughtful nature of my event, and I wanted to avoid this overt commodification of what I thought should be an individual-centric event. There would be no photos taken during the event, no glamour shots of it in action, no gift shop at the end.

And so, I looked up yogic symbols online and researched the meaning behind their ornate appearance. Of the various symbols that I encountered, I found myself attracted to the mandala. While other yogic icons symbolized the one-ness of all beings [the Om], the divine within [the lotus], protection [the hamsa], or the Buddha himself, the mandala symbolizes harmony and unity, with its concentric rings representing the various circles of life. Knowing that I wanted my event to evoke harmony and unity within the body of all participants - able-bodied or not - I decided to make my own mandala for the postcard.

I wanted to use the opportunity of designing my own mandala to incorporate symbolic imagery of the central nervous system. After spending hours drawing one from scratch, I realized that the mandala that I had created lacked the elegance of the ones that I had seen online and modeled mine after. While there was a beauty, in a way [and if I do say so myself], of the drawing that I came up with, it was too unrestrained to evoke a sense of calm or quiet. I redrew the mandala in Adobe Illustrator, keeping core elements of the original sketch while refining others. 

I called my event "Meditations of Paralysis", playing with the idea of literal meditation through yoga, and combining it with thoughtful contemplation, as suggested by the turn of phrase "to meditate on". I chose the words "meditations of" instead of "meditations on" because I felt that the former suggests more than just thinking - the meditation of something implies an action, whereas meditations on something references a body of thought, as in a collection of someone's thoughts on a specific matter. I used a light white watercolor background for the postcard, its subtle gradations evoking a visual quiet without being completely blank. I inverted this background for the back of the postcard, making it dark, using the dichotomy between the front and the back of the card to represent the pieces of the spinal cord that remain after an SCI.

[souvikpaul89]

Personas

Apologies for not posting again last week - I had a few applications to various things due and it was quite hectic. I'll try to post once a day this week, as there has been enough work done in the last week to warrant it. Today, I'll talk about personas - a useful analytical tool that designers use to keep the needs of the people that they're designing for in mind. These are abstracted characters that pull very specific details from real people and real experiences - they aren't real people but are more like an amalgamation of real people. For an exercise yesterday in class, we were asked to identify users [who we're designing for], experts, career helpers, and people that we want to make proud and rank them in order of importance in our thesis. I identified the three most important stakeholders for my thesis as people with spinal cord injuries, medical suppliers and doctors. If you remember back to my early posts about the thesis, one of my goals for the thesis is to make something real, something mass-marketable that will actually help people with spinal cord injuries arrive at that place of quiet determinism, of agency. My choice of key stakeholders follows directly from that. Today, I discuss what I'll need to do in order to develop personas for these stakeholders.

In reflecting on my thesis and trying to rank various stakeholders, experts and users for the thesis in order of importance, I concluded that the three groups that I'm concerned most about in my thesis are people with spinal cord injuries, medical suppliers and doctors/medical staff. I've been very clear with myself from the outset that I want to make real things as a result of this thesis - real products that can help people find this feeling of quiet determination and agency that I've discussed earlier. To do that, I think that I need to appeal to the three groups outlined above to successfully make a product that even has a chance of going to market. Luckily, as far as developing personas for these three stakeholder groups goes, I've had some experience interviewing people from each group - so there is some information that I do know.

People with SCI - The first thing anyone will tell you about spinal cord injuries is that each injury is different. Two people with the exact same injury in the exact same location can have dramatically different rehabilitative outcomes. This somewhat surprising fact makes it difficult at first to imagine developing personas for this group - especially because doing so almost seems tantamount to minimizing and censoring individual suffering, of describing an emotional, psychological and physical trauma in purely general terms that don't capture as much nuance as might be warranted by the severity of the user's experience. Another thing that I'm wary of is perpetuating ableism - I don't want to reduce people with spinal cord injuries to "people in wheelchairs". A lot of my early interviews with people with SCI highlighted how exclusionary the environment still is, even 25 years after the passage of the ADA, to people in wheelchairs, and how people with spinal cord injuries are either hailed as heroes, or disregarded as less than human. A lot of my interviewees just wanted to be regarded as normal. It was only later that I realized that this reflected the ableist mindset of society at large - its tendency to see people with disabilities as less capable.

Most of the people that I interviewed were optimistic. They were dancers, activists, and athletes. As a result, their response to my early designs tended to be very positive, and very reassuring. I do know, though, that there are those people with spinal cord injuries who have been struggling, who don't know how they'll make it through the next day, month or year of their lives. I think that in order to flesh out my thesis and the product offering that I'm developing, I will need to find some of these people and urge them to open up about how they feel about their injury, and what in particular makes them feel that way. I know that it's silly to say this on some level - it seems fairly obvious as to why they might feel depressed or desperate - but I have a feeling there's something deeper than the pure physical and emotional reality of a spinal cord injury feeding that negative mindset.

Medical suppliers - I only managed to interview two or three people from a medical supply company, and it's clear that I need to interview more. I know that these corporations tend to be massive, as they need to be in order to pay for the R&D that goes into product development, patent protection and various legal fees. I have a rough idea of what it takes to get a product from conception to launch - the sheer amount of time and legwork that are necessary - but I'm also in a position where I have an idea that I want to take to a medical supplier, but I have no idea who to show it to. This fact belies my ignorance in a way that is impossible to ignore - and if I'm to fulfill the goals of my thesis, I need to get a move on and contact more of the people who work in these companies, understand what drives their product development in terms of addressable markets, pain points met, and profitability. 

I think that it's easy to develop a one-sided view of these companies - that they are either greedy and profit-driven, or that they are benevolent, and that the products that they provide meet real user needs. The challenge will be two-fold - to be able to meet people in the companies who are willing to talk honestly about both the successes and challenges of developing products in the context of a highly regulated field like medicine, and to develop a nuanced persona to represent these companies.

Doctors and medical staff - One the primary ways in which doctors and medical staff differ from one another, from the interviews that I've conducted, are the extent to which they accept and advocate for alternative forms of treatment and therapy. I encountered doctors who were completely supportive of a product design thesis designed to help people with spinal cord injuries - but I also encountered those that were completely skeptical. Longtime readers of the blog will remember when my first co-designing workshop was canceled because a doctor bailed out at the last minute, probably because she didn't understand the value of such a workshop. Regardless, I think that I should do a better job of trying to talk to more doctors - to understand how clinical attitudes towards SCI can differ, and how quickly adoption of novel techniques and methodologies can vary between doctors, and which factors affect this adoption.

I have to confess that there's one group in particular that I should reach out to that I haven't just yet, and that's occupational therapists. One of my services, intended to let wheelchair users make better decisions about ordering wheelchairs, implicates occupational therapists heavily in its conceptualization. I need to finally bunker down and just ask if it's a good idea or not, to see what holes can be poked into the main idea of the service. There's also the Journey app, whose usefulness I'd like to verify with actual experts in healthcare, with the people who help take care of recently spinal cord injured people.

[souvikpaul89]

Design Delight and the Thesis Experience

Well, you'll notice that I did not end up posting everyday the way that I said I would in last week's post. The reason why? Well as it turns out, the powers that be at SVA PoD are trying out a new system where only two classes at a given time assign homework, which means we can spend more time on each assignment. Today's post is about one of those two assignments, for a class called Design Delight, taught by Emilie Baltz. In it, we are to reframe our thesis as an experience, evocative of a feeling or a set of feelings that represents our thesis. Our first assignment was to create a postcard for the thesis event, thereby beginning its exploration and development.

In the first class of Design Delight, the 2nd year students at Products of Design were asked to come up with a feeling that represented their thesis, and to create a silly walk that evoked that feeling in the walker. The purpose of framing the deliverable as a silly walk was to remind us all that even though some of us are exploring serious topics [paralysis, assisted suicide, bereavement are a few that come to mind], we aren't prevented from making our thesis experiences fun. With that in mind, I decided that the feeling that my thesis was meant to inspire was freedom. I believed that the products that I would end up designing would help people with spinal cord injuries overcome the obstacles that their conditions presented them with. My silly walk was a sort of constrained crouch walk that lasted for half of the walk; after reaching the halfway point, the walk became a cross between a lunge, a skip and a slow motion run. 

Reflecting on this silly walk, I felt that I didn't quite nail down the feeling that my thesis is meant to evoke. I don't think freedom is the right word, and that it actually trivializes the permanence and pervasiveness of paralysis. A new product or thing wasn't suddenly going to make someone with paralysis better; it wasn't going to erase the trauma of injury or the hardships associated with SCI. What I was, and am, hoping to accomplish through my thesis is to help foster, or contribute to, a feeling of quiet determination - a sense of agency that defies the condition of paralysis. I'm not so hubristic as to think that my designs will be necessary for people to reach this feeling of determination - from my subject matter interviews, I talked to countless people with SCIs who needed no help from anyone to lead the lives that they wanted to lead, paralyzed or not. I want to make reaching this feeling easier for my users, which, I now realize, points to a specific moment in the timeline of recovery from injury that I'm targeting - the moment of adaptation and transition.

I threw around a few different ideas for what my event could be in my head, from a gamified physical therapy session to an Escape the Room style game that was structured so that a seated posture would be advantageous. I couldn't really figure out what the point of those events would be - why would people participate, and what would they get out of it? As Emilie taught us in class, a good event is like a story - it has an introductory part, some kind of an attraction; there's the meat of the story, the part where the participants are engaged; and then there's the conclusion, where participants realize why the event/story matters. I couldn't wrap my head around the conclusion part - if I did do an Escape the Room style event, what would people leave with? How would the event have impacted them? 

As ideas tumbled around my head, I remembered some of the work that I did last semester for the social innovation design sprint. One idea in particular focused on sensory deprivation in order to foster empathy and to help able-bodied people appreciate what it means to live with a disability in an ableist world. Taking the core of this idea, and wanting to turn it into something less kitschy, I explored ways in which participants could learn more about their bodies while learning more about what being paralyzed is like. At the beginning of the research phase of this thesis, I found myself wondering a lot about what paralysis actually feels like; from reading books and talking to people with SCI, I discovered that the sensation of paralysis differs from person to person, and most people with an SCI could distinctly remember very specific sensations after the accident that caused their condition that told them that something was wrong. I wanted my event to be an arena where these stories could be shared, to help disabled and able-bodied participants alike gain a renewed appreciation of their bodies.

This led me to yoga. I read about the benefits of yoga, especially for people with SCI - how positioning the legs differently could lead to bursts of energy, and how yoga as a practice fosters an inner connectedness that transcends physical ruptures in the spinal cord. Matthew Sanford, quoted extensively in an article by the Christoper and Dana Reeve Foundation, says that people with disabilities should listen to their bodies through yoga, "so they can hear a different level of sensation, so they can experience freedom that comes from connecting to this subtle level of sensation. It's not going to reverse their condition, but if you can listen to it and follow it, it'll lead to a better life". Yoga is also an intense sensory experience. The first time I ever went to yoga, I remember being astounded by how visceral it was. Emilie taught us in class that engaging in as many of the senses as possible would be key to designing a memorable and effective thesis event. 

And so the details of my event began to flesh themselves out - a guided yoga session, adaptive in the sense that disabled and able-bodied people are able to participate, with audio recordings of people's experiences with paralysis being played in between poses. 

Next time I'll talk about the actual design of the postcard, and the trials and tribulations along the way.

[souvikpaul89]

The Spring Semester

I'm back from India and [more or less] ready to kick thesis into high gear in the coming semester. We just had our first class of five yesterday morning, called Thesis II. As you may guess from the name, Thesis II is primarily concerned with thesis, as are all of the classes that the second year students at Products of Design take during our second semester. What this means is that updates will be plentiful, blog posts will be lengthy, and I'll be blogging at least five times a week, to post incremental updates on our progress. 

Now, the focus of Thesis II is information architecture, and more specifically about how to architect the information, or the story, around our individual theses. It might seem odd to begin to do that prior to finishing up the thesis work in its entirety, akin to counting chickens before they hatch, but in fact, it is important to consciously consider what the end goal of the thesis is as it develops. It's similar to how industrial design, even though it might typically be used at the end of product development after the engineering of a new product has been figured out completely as a solely aesthetic treatment, really ought to be invoked throughout the engineering and product development process. It'll be fascinating, at any rate, to see how my thesis develops, and how this class helps to shape that development.

For our first class, we developed conceptual maps of our thesis as a way to use the next 3.5 months to their maximum potential. For me, this meant making choices between the different ideas that I outlined in my blog post, to really bunker down on a few of them and think about what I want my design output to be in May. I realized that there are three speculative objects/designs that I want to pursue, as well as three concrete designs, which take the form of 2 products and 1 app.

On the speculative side, I want to continue to explore the bluetooth incontinence implant - and though I've already prototyped this product, I think that implants and medical devices have such a long lead time in terms of development, that it's hard for me to picture what next steps are, aside from contacting people at Medtronic about the design [which I have done, just waiting back for a response now]. The FES exoskeleton is another one of these areas of exploration, and is something that I think I could probably prototype on a really small scale, thanks to a few people that I contacted at MIT who worked on a similar project called LIMBO. The Training Wheels [name pending] service is another speculative design that I want to work on; I need to reach out to occupational therapists in order to validate the idea first.

On the concrete side, and where the bulk of my work will be in the next few months, I want to continue to develop the Rollable Ramp [although based on Boris' feedback, which I posted late last year, it probably won't be rollable anymore], the wheelchair frame that uses bike parts, and the Journey app, which helps to pair recently injured individuals to one another. The development of the rollable ramp will have to be equal parts engineering, to make sure that the ramp is structurally sound, yet portable, and design, to make sure that wheelchair users will actually benefit from carrying this thing around with them. The bike-wheelchair frame will mostly be an exercise in engineering, to get all of the parts to fit together with much of the design language inherited from existing parts, and the further development of Journey will involve more app design and prototyping. It appears to me that the work that I'm doing for this semester exists along a spectrum, first from speculative to concrete, and second from engineering to design.

Finally, a note on tone from here on out. One of the graduation requirements from Products of Design is that each 2nd year student needs to publish a midterm thesis book that summarizes work done up until December, and a final thesis book that is at least 25,000 words in length that summarizes work done up until May. My thesis defense book was around 12,000 words, give or take, and was around 140 pages long, so I can reasonably expect my final book to be twice as long. In order to facilitate the process of literally doubling the length of my writing thus far, I'll be adopting a more formal tone in future blogposts, so that it's easier to dump that writing into my final book!

[souvikpaul89]

Next Steps

Happy New Year everyone! This will be my last scheduled post for the blog, and so I thought that publishing it today and speaking about next steps for my thesis in the coming semester would only be appropriate.

In the next semester, I expect to pursue the ideas that excited me the most from the work done in this one, in addition to treading new psychophysical ground on my thesis. Those ideas that I intend to devote more attention to are:

Training Wheels [service]

Journey [app]

Comedy Night [social innovation]

Disability of New York [social innovation]

Bluetooth Incontinence Implant [product]

Mobile: a wheelchair attachment that uses functional electrical stimulation technology to externally stimulate the user’s legs for mobility [product]

B.Chair: a wheelchair frame that can use spare bicycle parts [product]

Stand Alone: a standing frame that paraplegics can use without assistance [product]

And these are the design principles that I hope to embody in my process and my work. I want to develop real, tangible products that will help improve the lives of people with spinal cord injuries, and of those living with disabilities, that alleviate hardship on both a psychological and physical level - design for psychophysical needs. I also want to explore the role of aesthetics and materiality as generative of identity and pride.

Thanks for reading everyone!

[souvikpaul89]

Business Model Canvases

In conjunction with the "Thesis as a Campaign" sprint, we were asked to prepare business model canvases for our thesis, reimagining the thesis as a non-profit, a for-profit, a crowdsourced campaign, etc. For those of you unfamiliar with the business model canvas, it's a tool to layout and strategize how businesses operate - where they get their revenues from, what their key activities are, and so on. I didn't really realize how to use this as a brainstorming/iterative design tool until after this sprint was over, but now that I have, I'm actually pretty excited to use it to reimagine the same services, products and apps in different lights. Here are the business model canvases for some of the projects that I'm excited to move on with next semester. It helps to begin reading from the Value Proposition section, which summarizes the core of what the business aims to do.