Unbound Pt 2

Unbound Part II Psychophysical Design for Paralysis and Disability

By Souvik Paul

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Problem Definition

Maslow’s Hierarchy of Needs, a conceptual framework that describes human needs in a prepotent framework, posits that more basic types of needs need to be fulfilled before more advanced needs can be considered.77 In that sense, someone who has just sustained an SCI/D must secure the body before tending to their identity in the aftermath of a traumatic event. Identity and individual agency are ignored almost completely in the treatment of SCI/D, even after the body has been stabilized, to

Maslow’s Hierachy, from StudiousGuy78

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It wasn’t until halfway through the thesis process, after the sprints were completed and around the time of my analogous experience, that I understood what the central problem, the thesis of my thesis, was: when a person sustains a spinal cord injury, their treatment is seen through a lens of restoration, not of empowerment.

When an individual gets injured, her physiological health is prioritized over her psychological health, for obvious reasons. Physiological safety is more basic and fundamental than psychological needs according to Abraham Maslow, an American psychologist who wrote at length about a psychological concept known as selfactualization. Self-actualization is the point in an individual’s development when she has reached her full potential.

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the overall detriment of the patient. More thought and deliberate attention must be given to the selfactualization of the patients.

In modern society, consumption is a form of selfexpression — the clothes that a person chooses to wear define how he is perceived by his peers, which in turn affects his daily interactions. It is through his purchase and use of goods that his reality begins to take shape.79 His social reality can be subtly determined by his manner of dress.

Wheelchairs, to take an example of products designed for disabled people, are distinctly “of a type”, forcing wheelchair users to embody the same product-based identity as one another. Individuality as a wheelchair user is almost impossible to attain, if only because the wheelchair and its limited aesthetics so effectively remind anyone who interacts with the wheelchair user of his disability. The disability isn’t merely a part of the disabled person’s identity, it is the disabled person’s identity. Wheelchairs are just one example of this phenomenon; the entire spectrum of devices and products for people with SCI/D are distinctly clinical, even those that are designed for home use. Primarily interacting with medical objects that lack humanity in their design, people with SCI/D constantly receive the message that their lives are irrevocably abnormal.

Unbound is a series of design interventions that aim to empower people with spinal cord injuries in order to counteract this status quo. In addition to products, the design work includes apps, services, and experiences that all seek to make more of the treatment of SCI/D self-led and directed by the patient.

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 is situated.

To do this, Unbound features four main design offerings: a wheelchair loaner service called Test Drive, a rehabilitative app called Journey, a restorative yoga event called Silent, and a medical product called CleanCath. Before I describe the delivery of those offerings into final prototypes, renders, and experiences, I will discuss at length the development phase of Unbound.

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This represents a huge paradigm shift from the first semester, where I envisioned my thesis to be curative and restorative. Through the completion of my thesis, I’ve realized just how important basic aesthetics can be to the experience of using and relying on an object. I’ve learned that while walking again is an important hope for someone with an SCI/D to have, it’s not always the most productive goal to work towards. Instead, it’s the dayto-day experiences that can and should be improved upon, both from a rehabilitation and a design perspective.

the capacity, condition, or state of exerting power

agency

This systems map contextualizes and frames the central thesis problem.

and help the person accept them as

Mental/Emotional

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THESIS

realities

because of

obstacles

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their

incomplete SCI

therapy

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body

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where an “expert” is someone other than the injured person

through a wheelchair marketplace

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Journey

CleanCath

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that impact its view of disability and

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adaptation

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complete SCI

“normal”

restoration,

through designed products

through yoga & story-telling

society’s perception

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with only a temporary reliance on

not of

aesthetics & design

Prepared by Souvik Paul for Unbound

and ignoring

function

is created by only considering

which is physically manifested through choices of

identity

which help the actor form a sense of agency and

self-driven

is a state of being that results from actions that are

empowerment.

such as: wheelchairs catheters crutches

medical equipment

with a permanent reliance on

“abnormal”

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is seen through a lens of

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treatment

where recovery means walking again

could result in

recovery

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emotional trauma

both do damage to and come to define the individual’s sense of

physical trauma

is the result of

spinal cord injury

because of

sustains a

loses their sense of

person

that contribute to instead of define

When a

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Development: Experiential Research

I didn’t expect this week to go by with that much difficulty. I knew it would be hard but thought that I’d be able to move around New York City if I only had enough determination and grit. That wasn’t the case for using a wheelchair in New York City, and my presumption that it would be a bearable affair and a mere inconvenience revealed my own implicit and ableist bias. There have only been one or two occasions in my life that I’ve felt as physically drained as I have after coming home from school in a wheelchair.

On the night that I got the wheelchair, it was raining quite heavily. The streets were slick, and most curb cuts were at least partially submerged in murky water.

Those puddles, easily avoided when I walked around regularly, were a rude awakening to but a few of the problems facing wheelchair users in New York City. Not only did they make the hand rims of my newly acquired chair absolutely disgusting, I found that their prolonged and repeated presence over time had actually begun to erode the base of many curb cuts. I had to rely on the help of three strangers to get me over the curb cut, and I was almost thrown me out of my chair twice on the four avenue route back to the studio. In the rain, the visibility was poor, and I was also almost run over at a crosswalk by Gramercy Park by an inattentive driver.

I slowly became more adept at getting around. I could successfully pop my front casters up and over eroded curb cuts, rendering much more of the city accessible. It didn’t rain since that first night, but I had still taken to wearing gloves almost all the time when I needed to

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The development phase of the double diamond methodology is marked by a period of review of the ideas that resulted from the discovery and definition phases of the design process. In Unbound’s development phase, I chose to review my ideas experientially; as I was working on defining the central problem for my thesis, I was taking steps to develop more empathy for my users.

Though there was no way for me to simulate the trauma or sensation of what it’s like to have an SCI/D, I tried to understand what it was like to navigate New York City in a wheelchair. For one week in February, I had a loaner wheelchair from SVA in my possession which I used as my sole mode of mobility and transport.

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get anywhere in the chair. The hand rims were a magnet for hair and dirt. I’ve been surprised by the kindness of others — there were multiple occasions where complete strangers went 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 was my stop. There was one instance when I was on a bus trying to get into position to be strapped in, and someone abruptly lifted my wheelchair and slid it over. It was an incredibly jarring experience, and it still surprises me that the person didn’t even bother to ask if it was okay to move me.

I rode the bus more times over the course of the week in the wheelchair than I had in the past 4 years of living in New York City. The bus was the only way for me to get to school from my apartment. The subway station by my apartment at 59th St — Columbus Circle was accessible, but the closest accessible stations to school were 34th St Penn Station and 14 St. In order to commute via subway, 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 4 streets was enough to thoroughly exhaust me, this wasn’t really an option for me. Taking the bus meant that I only needed to wheel about 3.5 avenues, which was quicker than the alternative.

Boarding buses wasn’t too taxing; most of the MTA buses that I rode in were kneeling buses. When I’d wait at the bus stop, the drivers knew to stop in front of me, kneel the bus and let the ramp out to the street. The ascent onto the bus was always a challenge — I would lose momentum halfway up, and have to grab the support rails on the bus to avoid flipping over backwards or sliding back. Once onboard, I’d have to turn around in an extremely narrow space so that I could be strapped into the handicapped seating area. It didn’t help that the entire bus slanted down towards the curb, making it extremely hard to wheel uphill against the bus’ slope.

I was always extremely self-conscious of this whole process, because I knew that I was the reason that a routine bus stop became a chore for the bus driver, and a delay for my fellow passengers. The best buses that I rode on during this experience were the newest Select Bus Service buses, which had ample room to maneuver

What I never got used to, however, was 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 traveling via wheelchair. Not only does a wheelchair user have to avoid trash, pet excrement, and bumps and cracks every step of the way, she must also pump significantly harder with one arm in order to avoid spilling out into the street, or into a tree planter, or into a pile of trash, or into passersby, or any number of obstacles strewn about on the sidewalk.

This tilt also meant that I would only be able to travel half as fast as I could normally travel, because I could only use one arm to wheel in order to counteract gravity.

I discovered that muscles fatigue faster and stay tired longer. Conceptually, using a wheelchair ought not be as physically taxing as it is in reality, but the tilted sidewalks, and their unevenness make traveling even a block astoundingly tiring.

Traveling by wheelchair made something like carrying a cup of coffee a treacherous task. I once went to purchase coffee from the coffee shop across the street from school. That shop requires that disabled people call a number if they want to be let into the store, though the weather on the day of my visit permitted that the door be left open all day, making my unassisted entrance possible. A trip that normally took 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.

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within them. It was eye-opening to experience how much less embarrassed I felt in those buses because I was able to position myself in one attempt. My experience was a testament to the Universal Design philosophy that disability stems from bad design. I also only had to pay my fare once in the entire week that I spent in a wheelchair. The downside to the bus was the longer travel time. A commute that used to take me 20 minutes door to door took me at least an hour during normal commuting times.

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My time in a wheelchair reframed these mundane, everyday tasks as huge hassles — a reality that really began to weigh on me as my week in a wheelchair progressed. I began to 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 didn’t want to go anywhere, knowing how newly difficult it was for me to get around. I found myself trying to gauge how far each push of the wheels took me, and it would always surprise me how slow I felt. I found myself asking my friends if they were slowing down because they were walking beside me.

What made it worse was that people would either be overly sympathetic or unappreciative of how difficult wheelchair travel is. A few classmates expressed their pity for me as they followed me wheeling around the studio with their eyes; others thought that I should be in the wheelchair longer, not realizing how draining and difficult it was to be in the wheelchair for even a week. As much as I appreciated having people help me, I usually didn’t ask for help unless people offered first. I also noticed that when people looked at me on the street, they tended to look at my chair and avoid eye contact, as if I were nothing more to them than a wheelchair — though I wonder if this was just a result of me feeling vulnerable and sensitive and projecting my expectations onto reality.

Being in the wheelchair was also oddly painful. I tried to lift myself out of my seat every once in a while, but I still got 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 also sustained two blisters on my right hand, even through gloves, because of how hard I needed to grip the wheelchair wheels in order to get over bumps or other obstacles.

It was also astounding that wheelchair use was so bad for me when I was not using a wheelchair in the bathroom or when I was at home in my apartment. Using a wheelchair would render most parts of my apartment inaccessible — including the kitchen and the bathroom

I let myself off easy by leaving the wheelchair during parts of the day, yet I still struggled immensely with this experience. As a result of the week that I spent in a wheelchair, my overall empathy for my users increased immensely, and my experience in the wheelchair underscored that design for users with SCI/D is something that I need to pursue past the completion of this thesis.

It also laid bare my implicit biases as an abled designer designing for a disabled population. My belief that the week would pass without incident, that being in a wheelchair wouldn’t be terrible or exhausting, made my assumptions clear. Knowing this, I began to rethink some of my work, and tried to more deeply incorporate my users’ perspectives into my product development. In designing the CleanCath device, I realized how difficult it would be to use the product from a seated position.

As a result, I gave the product a tilt so that its opening faced forward at a 45 degree angle, making its contents visible from a wheelchair.

I also became more aware of instances where I was unintentionally fetishizing disability. The initial designs of Silent, my thesis experience, only featured audio recordings of people with SCI/D. After the wheelchair experience, I realized that I needed to include the perspectives of other people and other bodily experiences in order to avoid presenting paralysis with what might have been interpreted as an unhealthy obsession. As a result, the event presented a much more nuanced perspective on the body that was more approachable by disabled and abled people alike.

In the next section, I will describe the final design offerings of my thesis.

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— and, in fact, the entrance to my building was not accessible. In order to get in or out of the building, I’d either have to take the service entrance that deposited me out the back of the building, or I’d have to hoist my chair up and down three stairs, dragging my body along behind it.

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Delivery: Final Design Output

191 Delivery: Final Design Output

In this final phase of the design process, which lasted for several months, select work completed earlier in Unbound was refined to a more polished state. These designs directly addressed my central thesis statement, when a person sustains a spinal cord injury, their treatment is seen through a lens of restoration, not of empowerment, and benefitted from the perspective that I gained through the development phase of the thesis.

There were four main deliverables of Unbound: a service named Test Drive, a mobile app named Journey, a thesis experienced named Silent and a thesis product named CleanCath. The details of their final development follow in this section.

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The first wheelchair you get and the loaner chair that you use after the injury are the two worst wheelchairs that you’ll ever own. ­— Carina Ho

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Service Design: Test Drive Test Drive builds on the idea of Training Wheels, the service that I designed in the service design sprint earlier in the thesis process, and is a wheelchair loaner service that replaces loaner chairs with used wheelchairs. Loaner chairs and first wheelchairs are the two worst types of wheelchairs that a wheelchair user will ever use. This is made all the more tragic when put into context — most individuals who have to order a custom wheelchair after leaving the hospital are experiencing a transition from abled to disabled life.

All of the fear and uncertainty that accompanies the trauma of acquiring a disability are magnified by the fact that their mobility and independence are severely curtailed by the poor fit and design of the loaner chair and first wheelchair. The very first experiences that these individuals have with the world outside a hospital after a lengthy hospital stay underscore just how much has changed since they’ve acquired their disability.

The physical world remains inaccessible to them even in a wheelchair and contrasts starkly with their lives before the injury.

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A user journey map that illustrates how important a properly sized wheelchair is to the overall comfort of a patient with SCI/D. Opposite, the same user journey map, overlaid with the impact of Test Drive on patient comfort.

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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 that is an almost perfect fit? 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, they could borrow the chair for 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.

After conducting market research and looking at how used wheelchairs are currently sold — whether through eBay, Craigslist, or disability forums — I realized that there were a few key components that were necessary to making sure that Test Drive was a credible service.

The first stipulates that the service needs to have the sign-on and approval of the medical community. Without the support of occupational therapists and wheelchair providers, nothing distinguishes Test Drive from any of the other, extant sources of used wheelchairs. User interviews and surveys that tested the Test Drive concept with potential users indicated that users wouldn’t want to sell their used wheelchairs for fear of potentially injuring their customers and the liability that would result from such a transaction — the service also requires some kind of verification as to the quality of the wheelchair being sold.

Existing avenues for wheelchair sales lack precise classification of the wheelchairs being sold — listings for used wheelchairs classified as a size “L” abound online. This method of sizing wheelchairs starkly contrasts with how occupational therapists size patients for a wheelchair, where there is a much higher degree of accuracy. The popular wheelchair manufacturer Ti-Lite has wheelchairs that can be customized in 13 different dimensions and measurements.82

Opposite, a screen grab from an eBay.com listing for a rigid frame wheelchair that shows how few details there are on existing secondhand wheelchair sales channels.

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In order to rectify this in Test Drive, the user interaction with the service includes a consultation visit with an occupational therapist — both to size the wheelchair for listing on Test Drive, and to validate the condition of the wheelchair. Users who are interested in Sample pages from the TiLite ZRA wheelchair series order form showing how customizable wheelchairs are.80,81

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borrowing a wheelchair from the service similarly need a wheelchair prescription with accurate measurements from an occupational therapist.

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After designing a website for Test Drive, I reframed the service as a marketplace — where buyers can connect to sellers and vice versa — thereby reducing costs associated with shipping wheelchairs and warehousing them. Eventually this marketplace might expand to allow for the resale of any expensive and durable medical equipment that could be used by multiple owners.

A website for Test Drive that recasts wheelchairs as objects of desire.

Opposite, and following spreads, showcase several key slides from the presentation deck for Test Drive.

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Nights are really hard for a lot of patients; there isn’t a lot going on, and there’s time to sit and reflect.

— Lauren Goettsch

Opposite, an early render of the app welcome screen.

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App Design: Journey Journey builds on work completed during the app design sprint earlier on in the thesis process and is an app 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 most support and encouragement comes from people who are going through the same experiences as the SCI/D patient. It can be discouraging to only be in touch with experts like SCI/D veterans or healthcare professionals, who may view the entire ordeal from a clinical standpoint, and it can be isolating.

This idea has evolved in the past semester to involve an entire team of individuals that 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. The app primarily relies on a chat interface to connect users; in the chat, users can post videos related to their recovery in addition to conversing with one another. Methods of input include a text keyboard and voice-to-text interface.

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Opposite, early renderings of screens for Journey.

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Early renderings of screens for Journey. In the right-most screens, patients were asked to log their own emotional state on a daily basis.

Initially this involved a heavy-handed use of stereotypical colors, with an energetic orange and blue used as the predominant UI color if the user was happy, and a morose grey and purple used if the user was sad.

As I iterated the design of the user interface, I began to research the psychological underpinnings of color in order to more effectively affect the mood of the patient using the Journey app. Instead of merely reflecting the user’s mood, the app attempts to alter it through the use of color. Because the colors yellow and green are associated with happiness and stability, respectively, these became the predominant colors of the UI when the user was sad. Red and orange, colors that signify energy and playfulness, dominate the UI when the user is energetic and happy, to capitalize on this positive mood and translate it into optimism. Blue, known to evoke feelings of serenity and trust, is used in the UI when the user’s mood is neutral, and as a transitional color when the UI changes in response to the user’s mood.83 The control of the UI also transitioned from the occupational therapist [i.e. expert-led] to the user herself [i.e. self-led]. By incorporating a conversation user interface [CUI] and having the user repeat a recovery mantra in order to open the app, the app could gauge the user’s mood and adjust the colors and overall UI accordingly without necessitating input from the therapist. An example recovery mantra could be “I am closer today than I was yesterday”, adapted from the writing of José N. Harris.84 If the user was sad while repeating this statement, the UI could highlight upcoming therapy sessions or how much the user had progressed in

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As my thinking on the app developed, I became interested in the idea of an app that responds to emotion. Instead of using splashes of color indiscriminately in each screen of the app, I designed the entire graphical interface of the app to be responsive to the user’s emotional state. Initially, I believed that the app could have two “views,” for the patient and for the occupational therapist, similar to how Uber has a different but linked application for riders and drivers. With the input of the therapist, based on that day’s therapy session and the her perception of the patient’s mood, the user interface [UI] of the app would change to reflect their mood.

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their therapy from the time of his or her accident; if happy, the UI could highlight upcoming physical skills sessions, to capitalize on the user’s energy.

An early experiment in making the app responsive to emotion.

Opposite, the welcome screen that instructs users to repeat the entry mantra for the app. The words highlight as the app detects the user’s voice saying the mantra.

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An exploration of two distinct graphic styles for the Journey app.

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The MBTI test that all users must take in order to join a team. The changing background color illustrates the emotional responsive feature of the app.

Opposite, the chat interface. The changing background color illustrates the app’s emotional responsiveness.

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In addition to responding to the user’s mood, the app’s UI can change if members of the user’s team — consisting of an occupational therapist, an SCI veteran and the user’s partner — “ping” the user. The ping is accompanied by an audible note, which is different for each member of the team. If all members of the team ping a user at the same time, the tones form a musical chord whose key changes according to the user’s mood.

The team view, configured to remind the user that she is not without support. These renderings illustrate what happens graphically when the user receives a single ping from a teammate.

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Visually, the ping blossoms on the user’s screen from the user who sent it. The colors of the ping emerge gently, accelerating if more members of the team ping the user. The purpose of the ping is to provide support in moments when words are not enough.

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The ping function when the user receives a ping from more than one teammate.

Wanting for Journey to remain relevant to the user past their exit from the hospital, I also designed the app to evolve with the user as his or her needs changed. The app, its UI, and the user’s interaction with it changes over time as the patient transitions from the ICU to rehab to outpatient. The home page changes over time and emphasizes different functionalities of the app, to reflect the user’s changing needs.

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Users can also visualize their recovery through the app.

Based on input from the user and from the occupational therapist, the app visualizes the user’s journey based on their physical rehabilitation and emotional experience in recovery. This feature was developed in response to an interview with a recently injured SCI/D patient who reflected that it was hard for her to see how far she had progressed in a year, even though she knew that her physical and emotional state had improved drastically.

In the recovery process, a sense of context is important for users to understand how far their journey has come since their injury.

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Experience Design: Silent Silent is an event that was designed as a component of my thesis. It is a multimedia restorative yoga session, a typology of yoga that I chose because of its emphasis on the connection between the mind and body.

The design of Silent began with the design of a silly walk, drawing inspiration from the Monty Python comedy troupe. In a sketch called Monty Python’s Ministry of Silly Walks, the troupe uses outlandish and emotionally evocative walks to comedic effect. The purpose of framing the experience as a silly walk was to distill it into a single feeling with which participants were meant to leave the experience.

My initial attempt to encapsulate the feeling of the event, and of the thesis as a whole, into a single word resulted in me designing a silly walk around the emotion of freedom. I believed that the products that I would end The Monty Python “silly walk”, made famous in the sketch “Ministry of Silly Walks.”85

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up designing would help people with spinal cord injuries overcome the obstacles that their conditions presented them with. My silly walk was a 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. The contrast between the two distinct parts of the walk was the focal point of the walk, and established the illusion of freedom by removing constraints from participants in the silly walk.

Upon reflection, my silly walk’s ambition to emulate freedom was misplaced. Freedom trivializes the permanence and pervasiveness of paralysis. A new product 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/D. What I was hoping to accomplish through my thesis was to help foster, or contribute to, a feeling of quiet determination — a sense of agency that defies the condition of paralysis. From my subject matter interviews and the memoirs of Martin

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Juette, Tricia Downing, and Matthew Sanford, I encountered several people with SCI/D who proceeded to lead the lives that they wanted to lead, paralyzed or not. I wanted to make this feeling more graspable for my users.

I brainstormed several different ideas for what my event could be — a gamified physical therapy session, a sensory deprivation simulator, similar to the ideas explored in the social intervention design sprint, or an obstacle course that imposed impairments on its abled participants. These initial ideas were one-liners and ultimately didn’t provide answers to important questions — why would people participate in the event, and what would they get out of it? A good event is like a story — it has an introduction that draws in participants; an An early ideation sheet for Silent.

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attraction that engages them; and the conclusion, which leaves the participants with a clear idea of why the event matters. Understanding how to structure the conclusion posed the biggest problem for me — what would people leave with? How would the event have impacted them?

I dug deeper into some of the ideas that I had brainstormed. Starting with the idea of a sensory deprivation simulator, I explored ways in which participants could learn more about their bodies and about what paralysis actually feels like. I learned throughout the course of my research what paralysis feels like, how it isn’t merely the absence of feeling, and how the sensation of paralysis differs from person to person.

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Hearing stories from my interviewees and their experience with their bodies made me more aware of my own body. Paralysis is a sensation that is highly idiosyncratic, and most people with an SCI/D can distinctly remember very specific sensations just moments after injuring their spinal cord. I wanted my event to be an arena where these stories could be shared, to help disabled and abled 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/D — 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,86 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

­— Carina Ho

connecting to this subtle level of sensation. It’s not going to reverse their condition, but if they can listen to it and follow it, it’ll lead to a better life”. Yoga is an intense sensory experience, and I wanted to engage as many senses as possible in the course of my event to make it more impactful.

Most significantly, yoga advances a school of thought around the mind-body connection that isn’t fully explained by medicine. Once the spinal cord is severed, the part of the body below the level of injury is medically thought to be completely cut off from the central nervous system and incapable of conveying “any meaningful information to the brain.”87 Yoga teaches that while the very important connection between the spine and body is hampered, there are other, more profound ways of understanding the body. Both abled and disabled people need to develop this understanding in order to bridge any gaps between the mind and the body that prevent a holistic understanding of the body.

225 Delivery: Final Design Output

Paralysis feels different for everyone. For me, it feels like... a numbness, like when you have a limb that falls asleep, and there’s a burning tingle.

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Now I feel weight. It feels like dead weight. ­— Quemuel Arroyo

I began to design Silent. Through my event, I hoped to bring abled and disabled people together for an adaptive yoga session; in between poses, audio recordings of people with SCI/D and other disabilities reflecting on their condition would play, heightening the mindfulness of all participants and fostering a deeper mind-body connection within them.

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

After deciding to coordinate Silent, I began to pull together visual collateral that would be useful in designing both the invitation to the event, as well as the event itself. I researched yogic symbols and the meaning behind their ornate detailing. 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.88 Opposite , an ornate mandala.89

227 Delivery: Final Design Output

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For a postcard that served as a preliminary advertisement for my event, I designed my own mandala to incorporate symbolic imagery of the central nervous system. I initially 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 the former suggests more than just thinking — the meditation of something implies an act of meditation,

229 Delivery: Final Design Output

whereas meditations on something references a body of thought, 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 front and the back of the card to represent the pieces of the spinal cord that remain after an SCI/D — active and inactive.

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Storyboards of the event and how I imagined it would progress — the feelings, mood, and lighting of the event.

231 Delivery: Final Design Output

232

As I collected recordings from various people that I interviewed over the course of my thesis, I prototyped the experience. I relied on the help of classmates and had them both lead and participate in yoga sessions as I played edited clips that discussed paralysis. I interviewed my test subjects afterwards, trying to ascertain if hearing the audio clips changed their yoga experience. Hearing the stories had a very visceral impact on my participants, the vividness of descriptions of paralysis and the empathy that they engendered drawing the participants’ attention to specific sensations in specific parts of their body.

I had my own doubts about whether or not hearing other people’s stories of paralysis would be beneficial for someone with an SCI/D, and had one of my early subject matter experts listen to an audio clip of someone describing paralysis. His reaction was visceral; his mood, which was originally light-hearted and jovial, quickly became serious. It was striking how much his own experience with paralysis differed with the account that he heard in the recording.

Opposite, a person with SCI/D reacting to the audio clips of another person reflecting on what her paralysis feels like.

233 Delivery: Final Design Output

234

It’s almost like white noise in the background. That’s how my sensations and my feelings are.

— Earl Bowser

I experimented with various forms of yoga, and took several classes myself in the course of developing the event. After forming relationships with a few yoga teachers in the New York City area, and discussing the event with them, I decided to focus on restorative yoga for my event. Its slow, methodical pacing and its emphasis on breathing and the mind-body connection seemed ideal for my goals for the event. Restorative yoga is a yoga style whose contemplative and deliberate movements stand in stark contrast to the constant transition between poses of other styles of yoga. Because of this, restorative yoga is particularly well suited for practitioners of all physical abilities.

The emphasis of restorative yoga is on the development of the mind-body connection through the thoughtful contemplation of the body in stillness and in silence,90 something that is of benefit to both abled and disabled people. One of my classmates who served as a test subject noted that this less strenuous form of yoga produced a different effect when combined with the recordings. Her experience became less visceral and more internal, more studied, when practicing restorative yoga.

Opposite, an early prototyping session held at the School of Visual Arts’ Visible Futures Lab with the help of Tahnee Pantig, who instructed fellow students Natsuki Hayashi and Jonathan Lung in a vinyasa yoga session.

235 Delivery: Final Design Output

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I partnered with yoga instructor Rebecca Ketchum to develop the event, understanding that my limited experience in yoga was insufficient for me to plan an entire yoga sequence. I collected audio recordings from 5 different people, 3 of whom with SCI/D. After I became cognizant of my own biases following my experience in the wheelchair, I also included the perspective of abled people in order to avoid fetishizing the SCI/D experience

The tools of the trade: Rebecca’s notebook, with the poses to be used during Silent, and the audio clips of lived-in bodily experiences in a playlist, ready to be played.

237 Delivery: Final Design Output

and to truly treat both perspectives as equal. I played with the idea of blindfolding participants so they’d complete movements solely using their perceptions of their bodies as opposed to using their visually-aided perception of their environment. Ultimately, Rebecca and I decided against this, realizing that an external blindfold could be distracting.

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Both the final invitations to the event and the booklet that was distributed to the participants at the conclusion of the event featured a hexagonal mandala that was placed in a square and bisected by a horizontal line. The booklet contained information about the design decisions behind the event. The structure of the event borrowed concepts from Matthew Sanford’s autobiography about paralysis and yoga.

In it, he described silences and healing stories as essential for the healing of the body and the creation of the mind-body connection. According to Sanford, “Silence is the word I use to describe the empty presence we experience within our experience — between our thoughts, between each other, between ourselves and the world. We feel the silence when we daydream, when we appreciate the beauty of a sunset, or when the love of our life truly walks away. It is an inward sense, often experienced as longing or an ache. It is the feeling of emptiness and fullness at the same time. The silence is the aspect of our consciousness that makes us feel slightly heavy. It is the source of the feeling of loss, but also of a sense of awe.

Healing Story is a term for the stories we have come to believe that shape how we think about the world, ourselves, and our place in it. They can be as simple as ‘Everything happens for a reason’ or as sharp as ‘How come nothing ever works out for me?’ Healing stories guide us through good and bad times; they can be both constructive and destructive. They come together to create our own personal mythology, the system of beliefs that guide how we interpret our experience. Quite often, they bridge the silence that we carry within us and are essential to how we live.”91 The sequence of poses that participants completed were the result of a dialogue between myself and Rebecca Ketchum. When developing the pacing and sequence of the yoga class, we made sure to include silences to go along with the healing stories contained within the recordings, giving participants time for personal contemplation after hearing the stories of someone else’s body.

Opposite, the cover page of the pamphlet handed out to participants. It features a hexagonal mandala bisected by a line, symbolic of a spinal cord break.

239 Delivery: Final Design Output

SILENT

Meditations of the Body

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The physical collateral used in the event referenced yogic symbolism and were intentionally chosen to underscore the symbolic meaning of the event. The yoga mats collected for the event were all either purple or blue, the colors associated with the crown and throat chakras. The crown chakra is physically associated with the central nervous system, the cerebral cortex and the upper spine. Emotionally, it’s associated with spirituality, consciousness and thought. The throat chakra is physically associated with the respiratory system and the ears — chosen for Silent’s focus on deliberate breathing and mindful listening.

Communication, openness and ideas are the various emotional components of the throat chakra.92 The set-up of the empty room, before participants arrived.

241 Delivery: Final Design Output

The lighting of Silent echoed this color scheme — the lights, white prior to the yoga session, turned to blue after its conclusion, a physical manifestation of the the sharing of ideas of lived experiences, and the increased consciousness and new ideas about others’ experiences that participants contemplated by the end of Silent. The booklet was designed with these principles in mind as well — just as the event featured healing stories and silences, so too did the booklet, with its explanatory prose bookended by deliberate negative space.

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The event was intentionally designed to engage in all of the participants’ senses in order to engage with the body in as many ways as possible. Restorative yoga directed participants’ attention to specific sensations of touch and awareness of their bodies; the healing stories of the recordings engaged their sense of hearing. The lighting change of the studio and the starkness of the studio in which the event was held engaged participants’ sense of sight. During the event, participants were given the option to have essential oils massaged into their skin, engaging the participants’ sense of smell. To engage with their sense of taste, they were served tea at the close of the yoga session, during a share back session.

Tea that was served after the conclusion of the session.

243 Delivery: Final Design Output

The final event was held on March 19th, 2015, in an accessible location whose original use was as a kendo studio. Held in Long Island City, the event was located near two accessible subway stops, and lasted from 5:30PM to 6:30PM. Participants entered a dimly lit room, and were led to their yoga mats; Rebecca and I introduced the concept to participants, which consisted of 5 abled participants with varying degrees of familiarity with yoga. An hour-long multimedia yoga experience began.

After the conclusion of the session with a shavasana pose, participants awoke to a room that was now lit with bright colors and were served tea as their feedback and thoughts were gathered.

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Participants reported that the experience increased their awareness of their own bodies, even if the participants had never done yoga before. One participant noted that he entered a liminal space between consciousness and sleep during the session, and from within this space it was difficult for him to differentiate between his own thoughts and the recordings that he heard during the yoga session.

Because of this, he felt as though the stories that he was hearing were his own, which dramatically increased both the empathy that he felt for the author of those stories and his awareness of his own body.

A participant holds a yoga pose with the aid of yoga blocks.

245 Delivery: Final Design Output

There is a scientific basis for this participant’s experience. Mirror neurons are a class of neurons that fire when a person both performs an action and observes that same action. Research has shown that this sympathetic firing, thought to be the neural mechanism responsible for the development empathy in primates and humans, can occur as a result of different stimuli.

Sounds, emotions, and sensations can all trigger the neural activity of mirror neurons. It’s possible that hearing the stories of people’s lived experiences in their bodies would have been sufficient to trigger mirror neurons in participants.93,94,95

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The lack of disabled participants in the event was a concern, as one of the original goals of the event was to get both abled and disabled people practicing yoga together in one room. Many of the subject matter experts who had participated in and contributed to earlier work in the thesis were unable to attend due to scheduling conflicts. I reached out to an adaptive dance group whose members were wheelchair users with different disabilities. There was relatively little interest in the yoga event.

Participants began the yoga session seated in chairs.

247 Delivery: Final Design Output

When I inquired further and asked an individual who had expressed interest in my thesis earlier in the process, I found out that she was wary of how the event was designed with respect to empathy and disability.

She felt as though the event was not developed from the point of view of disability, though part of this feeling was due to her lack of familiarity with the term restorative yoga. Not recognizing it as a specific style of yoga, she assumed that the event intended to use yoga to “restore” disabled people back to ability.

While I understand her concerns, I designed Silent to be neutral with respect to disability — I wanted to have both disabled and abled participants attend the

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event. I structured the event to treat the perspectives of people with SCI/D with same respect that I treated the perspectives of abled people, without fetishizing disability. I valued the perspective that people with paralysis have on bodily awareness in the context of a society that has long denied them the legitimacy of their experience, explaining it away as phantom pain.

Regardless, her feedback was valuable and reinforced the importance of positioning for Unbound.

They quickly transitioned to the floor, while still using the chair for support.

249 Delivery: Final Design Output

I hope to partner with existing adaptive yoga studios in the city to run the event once more for disabled participants, in order to solicit more feedback about the event, and understand how the event might impact disabled participants.

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“For some people, the worst notion of being in a wheelchair is the notion of elimination.” ­­— Dr. Barry McCasland

Product Design: CleanCath CleanCath is a catheter sterilizer that uses UV-C radiation to kill bacteria on silicone intermittent catheters. CleanCath originates with the early work on incontinence and bowel management that dated back to the initial research/design production of 100 sketches. Later, as part of the product design sprint, I prototyped a bladder control implant and application that functioned as a pacemaker for the bladder, to address SCI/D-related incontinence. After I developed a prototype using Arduino, I returned to my users and interviewed them, looking to develop a product that could immediately be produced, and wouldn’t rely on 5 to 10 years of development, as an implant necessarily would. I found a 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.

The development of the CleanCath was heavily influenced by futuring. I developed two scenarios, both of which take place in the year 2075. The stories were developed as metaphors for how the world ought to treat disability and to exaggerate how it currently treats disability. In

In the utopian scenario, science has progressed to a point where disability is thought of as something as temporary as a cold. Just as a person who sneezes on the subway isn’t given a second glance, people in wheelchairs are not pitied or gawked at in this future world. More important than the technology featured in the story was the attitude expressed 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.

In the dystopian scenario, I focused 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 — and biomodification. Biomodification is the process of modifying a biological organism using either genetic or mechanical means.96 The documentary “Fixed: The Science Fiction of Human Enhancement”, 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”.

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. The built environment, configured to favor the privileged who have turned their back to those without biomodifications, systematically excludes the disabled with its impossibly high walls and impossibly tall staircases. The scenario that I created 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.

251 Delivery: Final Design Output

both stories, I challenged notions of what disability is in the year 2075. The full text of both futuring scenarios can be found in Appendix B.

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A sketch and model of the hacked-together grappling hook, assembled from odds and ends by the economically disabled in the dystopic society of 2075.

253 Delivery: Final Design Output

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r: .4375” .3125” .625”

r: .3125”

r: .375” r: .625”

.3125”

4”

.875”

3.25”

10.25”

45º

4.25”

1.5”

.5”

11.5”

.8125” .5625”

Improvised Grappling Hook

Because futuring uses products to viscerally communicate the realities of speculative worlds, I created a hacked together grappling hook that referenced the dystopian scenario. 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 and building equipment to counteract this inequity. A revolution would form, a movement to take back parts of the city.

In addition to scenario development and physical model making, I also designed a newspaper to fully flesh out the sociopolitical context of the world that I had created, in both the articles on the front page and in the full page advertisement on the page opposite.

I framed newspapers as the ultimate luxury good in dystopian 2075 — only the extremely wealthy would have enough leisure time and disposable income to afford printed newspapers. In this world, the extremely wealthy, bio-modified members of society employ “normal”, unmodified people who live in poverty as servants in their houses — accessible to people without bionic implants only through rear entrances with multiple security checks. The ruling class couldn’t risk A construction drawing for the grappling hook.

Opposite, the newspaper of the future, mid-glitch as it begins its transition from cover-up stories to factual news.

255 Delivery: Final Design Output

having someone from the servant class stumble 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.

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 back page advertisement, made by a firm called Securitas, a security company who looks after the world, so everyone else doesn’t have to, projects 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 simultaneously evoke a sense of external threat — terrorists attacking the Keystone Pipeline, “Greater Russia” expanding

256

westward over Europe — that would compel 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 small 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 were the reason for the “nuclear tests” on The cover-up articles disappearing from the page.

Opposite, the informational transition completed, from fiction to fact.

Following spread, the two newspapers.

257 Delivery: Final Design Output

the “deserted” islands; the US-Mexico border would 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. The Securitas ad becomes an ad for bionic eyes.

Late Edition

Today, sporadic rain showers with an pH of 4, high 65. Tonight, clear, a colder night, low 41, smog index of 10. Tomorrow, partly cloudy, a slightly colder day, high 60. Weather map is on Page A18.

“All the News That’s Fit to Print”

VOL. CCXXIV . . . No. 78,676 +

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NEW YORK, TUESDAY, JANUARY 29, 2075

© 2075 The New York Times

$100.00

Food Shortage Averted by Philanthropist Coalition

TENSIONS HIGH AS GREATER RUSSIA TESTS U.N. PATIENCE

By MAGGIE HABERMAN and NICK CORASANTINI BOISE, Idaho — A consortium of the nation’s leading agricultural scientists and wealthiest billionaires presented news today of a blight-resistant strain of potato that experts believe can lead to the eventual reintegration natural foods into the average American diet.

The work presented was a culmination of a series of week long sprints that built on one another around a central theme of building agricultural resilience in the face of monocultural farming practices that have been necessitated by the spread of blight.

The consortium was hopeful when presenting the news.

“We’ll have a workable crop of in vivo potato by this time next year, which will be far cheaper than the pricey in vitro option,” remarked one billionaire who supported the efforts made here today. “This is really about the common Americans, and what we as a privileged elite can do for them.”

When asked about why the trade embargo with China can’t be lifted to secure food for Americans, no answer was given.

Continued on A13

Belarussian Prime Minister Beseeches Allies, Former European Union, for Help

By JULIE TURKEWITZ and KIRK JOHNSON

DAMON WINTER/THE NEW YORK TIMES

55 Years of Separation: A Retrospective of the U.S. – Mexico Relationship

By JONATHAN WRIGHT and ALEXANDER BURNS EL PASO — More than half a century has passed since the erection of the controversial wall between Mexico and the United States. The wall was originally constructed amid controversy by the 45th President of the United States, Donald Trump, shortly after wresting control of the White House from unpopular

second term president Barack Hussein Obama II. Though political historians largely agree that the idea behind the wall was likely a largely symbolic one, its role as a centerpiece of an aggressive, yet effective domestic policy aimed primarily at reinforcing and “making America great again” is undeniable.

Critics derided the Trump policy as ineffective and expensive, as virtually impossible to justify

as a political strategy, but were forced to recant their earlier positions after Trump’s election and determined follow-through to this early campaign promise.

The wall is credited with creating hundreds of thousands, if not millions of jobs for Americans – first in its construction and then in its maintenance and patrol.

The wall effectively plugged the holes in what was a porous border, with illegal immigrants and

drugs pouring through on a daily basis in great quantities before the erection of the wall.

Though relations with Mexico suffered as a result of the construction of the wall, experts agree that the wall had the unintended consequence of isolating Mexico and thereby forcing it to adopt a series of unpopular pogroms that saved the country by eviscerating its criminal element.

Continued on A4

Keystone Pipeline Security Increased as Threat Level Upgraded to Red by the C.I.A.

By IROQUOIS PLISKIN DAWSON, Yukon Territory — Three platoons of American military personnel arrived in Dawson in the pre-dawn hours in order to be deployed in a protective formation around the Keystone Pipeline. This military action comes as a coordinated response to the recent upgrade of the threat level to Red, the highest its been since the terror attack

at the beginning of the century that felled two skyscrapers on the now-submerged island of Manhattan and killed over 3,000 Americans, and the ISIS attacks a decade later.

The contemporary risk stems from violent and militant environmentalists. When the pipeline was created in 2020, at the tail-end of President Donald Trump’s first term as president, just before he assumed emergency powers, it marked a tri-

umphant and democratic victory over the same environmentalist groups that challenge the sanctity of American democracy and security of the American people today.

The pipeline is responsible for supplying much of the country’s energy needs and is of vital strategic importance to the country.

It is unclear why domestic terrorists are targeting the now iconic piece of infrastructure.

Continued on A13

The Keystone Pipeline in the Canadian Annexation, said by the C.I.A. to be a target of extremist environmental terrorists.

Nuclear Testing Resumes on Abandoned Hawaiian Islands

By SHERWIN D. OPPENHEIMER HONOLULU, Hawaii — The American military resumed testing of its expanded nuclear arsenal on the abandoned Hawaiian Islands in the face of an incensed global atmosphere. As tensions rise worldwide with numerous conflicts brewing on almost every continent, the American Secretary of Defense has ordered, with the approval of the President, several nuclear tests to both intimidate America’s enemies abroad and to assure its allies.

America is nominally the only nation in the world to maintain a nuclear stockpile. Much of the

world’s nuclear weapons from the 20th century were decommissioned in the Midcentury Détente - a period when international conflict superficially ceased as sea levels rose unpredictably. The freak natural events decimated coastal cities and disrupted trade routes, forcing even landlocked nations to reevaluate their strategic position.

America was well placed to provide aid to nations around the world, in exchange for the sole right to develop and maintain a nuclear stockpile. As the international situation adjusted to the sea level rise, America used its influence with its allies to track down and decommission any remaining nuclear devices.

The tests are sure to enrage Chinese officials, who will claim that winds from the islands will be sufficiently strong enough to carry radiation from the islands to the Chinese mainland. This action is technically in viola-

tion of the nuclear treaties that emerged out of the Midcentury Détente, but American diplomats are confident that they can justify the move to test to the world.

Continued on A14

IMAGE FROM NASA

The Hawaiian Islands are largely deserted after sea level rise.

MINSK, Belarus — Greater Russian troops assembled on its western border, roughly 25 miles from the former capital city of Belarus. Tensions ran high in the city as worries about Russian aggression and expansion turned into rumors and hearsay. Several demonstrations broke out in public squares in the city despite the harsh pH 4.5 acid rain that drizzled throughout the day.

“Our leaders, they are doing nothing,” noted one portly Belarussian woman with a thick Slavic accent.

Indeed, anti-government sentiment ran high. These protests, however, appear to have fallen on largely deaf ears as leaders have been too busy appealing to the sympathies of other nations to pay their constituents any mind.

The Prime Minister of Belarus held a press conference in desperation, publicly begging for foreign aid and falling to his knees in front of international TV in the Belarussian Parliament’s press room. At once pleading for aid and accusatory towards the rest of Europe for allowing Ukraine, Latvia, Lithuania, Estonia and the eastern regions of Belarus to fall into the hands of Russian expansionist leaders with little complaint, the Prime Minister’s speech struck a confusing tone.

It is unclear whether or not the members of the former European Union will provide aid, but America may strategically help.

Continued on A4

Civil Liberties Groups Protest as Gun Manufacturers Adopt Stricter Biometric Controls

By CLARISSE SIMS and ROBIN SCHERBATSKY FAIRFAX, Virginia — Civil liberties groups gathered around the headquarters of the National Rifle Association to protest the prominent governmental organization’s mandate establishing the need to install biometric controls on guns and various small arms nationwide. Gun owners and gun dealers who do not comply with the mandate will be subject to arrest and imprisonment.

When asked about his opposition to the new mandate, which

these reporters believe will ensure the safety of the average American citizen, a representative of the American Civil Liberties Union, a largely defunct organization whose mandate is to disrupt the government, responded “these policies are exclusionary for those of the population who can’t afford the expensive biometric upgrades to own arms.”

The same representative did not reply when asked how someone without these implants could prove their mental capacity when purchasing the arms.

Continued on A16

INTERNATIONAL A4 - A12

NATIONAL A13 - A20

ARTS C1-C6

OBITUARIES B15 - B16

ENVIRONMENT B17 - B20

Amid Another Russian Resurgence, Vows to Avoid Previous Mistakes by Historical NATO Allies

Prison Reform Celebrates its 10th Year of Success

MoMA Shuttered

Once a Villian, Now a Hero

Iconic New York institution closed amid funding problems sparked by anti-national purges of the 2050s.

Famous artists weigh in. PAGE C1

Charles A. Graner Jr., once vilified for his role in the Abu Ghraib Prison scandal, celebrated as a hero at his death at age 107.

PAGE B15

Conservation Efforts Making Ground

Leaders agree that internal politics no longer an issue in the face of a potentially existential threat.

PAGE A4

First Man to Swim Across the Pacific Ocean Named US–Japan Ambassador Newly appointed official assures skeptics that she is ready for the task. PAGE A8

Though controversial when adopted, the impact of the strict measures to universally isolate prisoners in the penal system are undeniable in retrospect, experts say. PAGE A13

Recent Police Activities Concern Communities Allegations of civil liberty abuses with virtual impunity on the part of the perpetrators abound in the wake of several deaths.

PAGE A15

VR Hive Discovered A Virtual Reality hive has been discovered in the abandoned subway tunnels in Brooklyn, with as many as 12 individuals were arrested in connection to the illegal institution, the last of which was thought to be wiped out ten years ago.

PAGE C3

SPORTS B10 - B15

In Superbowl CIX, Toronto is the Underdog Experts predict that the New England Patriots will end their 50 year championship drought. PAGE B15

Scientists develop a heartier oak tree, altered to withstand precipitation with pH as low as 2, to be included in the National Arboreal Conservation in Middle Ontario; nature enthusiasts worry about eventual reintroduction of pure wood products.

PAGE B15

259 Delivery: Final Design Output

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Final Form Development The futuring exercise helped me explore Unbound through metaphor and extrapolation. Not wanting to abandon the themes of dignity and resilience that I had explored in the dystopian future, I interviewed a subject matter expert about the details of her urination and defecation programs.

I had realized early on that having to relearn these two activities was one of the hardest things to adjust to after sustaining an SCI/D. Viewed in terms of Early form explorations in blue foam, for the CleanCath.

261 Delivery: Final Design Output

personhood, urination and defecation are two of the first things that we learn in our development as human beings, with the development of those skills occurring in most cases before the establishment of memory. To suddenly have the body’s relationship to the mind reframed in completely altered terms, and to have to relearn these most basic functions is itself traumatic.

I learned from my subject matter expert that she reused single-use catheters for her urination program; though this isn’t a doctor-recommended activity because of the potential for infection, the way that her insurance paid out once a month made it necessary for her to stockpile

262

catheters. It was virtually impossible for her to predict how many catheters she’d need a month in advance, and the doctor’s medical recommendation had no traction against the practical reality of my subject matter expert’s situation. I set out to design a catheter sterilizer to help people with SCI/D exert control their incontinence, as the disabled population exerted control over externally imposed obstacles in the dystopian future.

I explored various methods of sterilizing catheters: rinsing with hot water and rubbing alcohol, using dry heat, and using UV-C radiation. The last method was employed in the design of the CleanCath device, which incorporated a UV-C fluorescent bulb in its design, allowing users to quickly and effectively sterilize their catheters.

An early design of the CleanCath that featured individual carrying tubes for catheters. Designed to fit male catheters which are 17 inches long, this design was massive. The base is about 8 inches wide.

263 Delivery: Final Design Output

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A sketch model of a smaller and more portable CleanCath, designed to sterilize female catheters, which tend to be 6 inches long. This model was made out of lasercut acrylic.. This model introduces a tilt to the device, facilitating its use for wheelchair users; this feature was incorporated into future iterations of the device.

265 Delivery: Final Design Output

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Ideation sketches for the CleanCath.

267 Delivery: Final Design Output

268

In order to use the CleanCath, users must rinse out used catheters with warm water, and place them into the body of the CleanCath. Closing the lid and initiating the cleaning cycle will turn on the UV-C bulb, which irradiates the catheters, rendering them sterile.

Because of my choice to use UV-C, which can only penetrate specific materials that are transparent to its wavelength, I was constrained in the materials that I could use to make the CleanCath. The interior surface of the container had to be made out of quartz, and the catheters had to be made out of silicone to allow for the sterilization process to work.97 Though this constrains the choices of my users, silicone is one of the safest materials from which to make catheters, and is a much better option than the prevalent alternatives of PVC and latex, not least because of the lower risk of UTIs associated with silicone catheters.98 The first 3D printed model of the CleanCath. After printing the model, I made the decision to add a handle to the lid, which was added on using MDF.

269 Delivery: Final Design Output

Early iterations of the product featured a detachable oblong cylindrical container that had a quartz glass interior that slid over the bulb, which attached to the base of the sterilizer at an angle, and a silicone base for impact absorption. The angle was included in the design so that a wheelchair user could examine and manipulate the contents of the CleanCath comfortably from a seated position. The container was designed to fit multiple catheters at once, and to be easily taken with the user if he or she was on an extended trip away from home. The form of the container allowed for a single catheter to be removed at a time with minimal risk of contaminating the other catheters.

270

These iterations on the design of the CleanCath extensively referenced the aesthetics of existing medical devices.

At the time, it seemed natural to build the CleanCath’s aesthetics using the familiar language of medical products — the colors white, green and blue, the material antiseptic plastic. I realized that this conflicted thematically with the rest of my thesis, and that despite my best intentions, I was designing another object that failed to humanize the experience of having a SCI/D.

The CleanCath model, prepared for spray painting.

Opposite, the spray painted model with the UV-C bulb at the heart of the design. This model embodies an aesthetic that is very much typical of medical goods.

271 Delivery: Final Design Output

272

3D renderings that aim to humanize the CleanCath’s design by using non-traditional, “elevated“ materials such as aluminum in the product’s construction.

273 Delivery: Final Design Output

274

An exploded view of the CleanCath and an intial attempt at branding the product.

275 Delivery: Final Design Output

276

Phase Two of ideation sketches for the CleanCath, this time with an emphasis on portability.

277 Delivery: Final Design Output

278

In revising the design to humanize the device, I incorporated the UV-C bulb into the body of the device to increase its portability. I cut down on the size of the object, understanding that my users wouldn’t have a desire or need to transport and store 20 catheters at a time. The base became a charging stand for the device, which was be powered using an internal battery and charged via microUSB. I split the internal chamber

Form studies in blue foam for the new design of the CleanCath.

279 Delivery: Final Design Output

in two to allow users to store used, rinsed catheters separately from the unused sterile catheters so that sterility was maintained even if the battery lost its charge. I explored the use of alternate materials in an attempt to humanize the product, and to make this constant touchpoint of disability more discreet and less reminiscent of the hospital.

280

281 Delivery: Final Design Output

During the design process for the CleanCath, I also deconstructed several existing UV-C products, from toothbrush sanitizers to UV-C sterilizing wands. This was essential in designing a viable end product that could eventually be manufactured and used by people with SCI/D.

282

The different form prototypes developed along the way.

283 Delivery: Final Design Output

284

Because the CleanCath utilizes technology that has already been tested and demonstrated to be antibacterial and anti-microbial,99 and work has been done to create a UV-C catheter sterilizer for a clinical setting,100 I am optimistic that this product can be produced and can succeed in a market environment. I hope to present my designs to existing manufacturers of UVC sterilization equipment and develop it further in collaboration with them, eventually bringing the product to market and helping to ease the lives of people with spinal cord injuries, and others who also suffer from incontinence.

This page and following spreads, 3D renderings of the final iteration of the CleanCath.

285 Delivery: Final Design Output

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287 Delivery: Final Design Output

288

289 Delivery: Final Design Output

290

291 Delivery: Final Design Output

292

293 Delivery: Final Design Output

294

295 Delivery: Final Design Output

296

297 Delivery: Final Design Output

298

Looking Forward

I will continue to work on aspects of Unbound past its presentation at the SVA Theater in Manhattan on May 6th, 2016 and my graduation from Products of Design on May 18th. Whether that work will be completed in a professional context or as a side project remains to be seen. As Unbound continues to grow and develop, I hope that the design work will have a real and tangible impact.

Socially, I hope that Unbound contributes to the destigmatization of disability by making it easier for people with SCI/D to adjust to their physical limitations on a psychological and physical level. If the ethos of the work is compelling to stakeholders in the medical field, it may help shape and contribute to an emerging paradigm of medical care that empowers patients and alters the existing doctor-patient relationship. If medical treatment is understood to be a physical and a psychological phenomenon, its structure and methodology can change to reflect that understanding, improving patient outcomes and humanizing the entire experience.

Unbound’s ongoing political relevance stems from the exploration of Unbound as a campaign of productive vandalism, aimed to draw attention to inaccessible places within the built environment. Though the extremism of this idea no doubt contributes to its potential efficacy, this thinking could evolve into a less inflammatory typology of political activism.

Instead of relying on graffiti and ad hoc measures to publicly rate and display how accessible restaurants are, a more moderate iteration of this concept could establish an accessibility rating system to be implemented by the New York City government.

299 Looking Forward

Unbound began as an inquiry into the role that design can play in helping people with spinal cord injuries. Over the course of a year, this general inquiry eventually produced the specific designed outcomes of the thesis.

From originally wanting to create medical devices that had significant therapeutic and medical impacts, to developing an understanding of the importance of aesthetics as a tool for identity-building and letting that perspective drive the work of the thesis, the thesis is a reflection of an evolution of my own attitudes and predilections as a designer.

300

Materially, Unbound explores how medical devices can be designed with the same care and attention to detail that is demanded by consumer goods and electronics.

Medical devices are constant reminders and touch points of disability, and should be designed with this high degree of interaction with the user in mind. If a product like the iPhone is highly considered in every aspect of its design, a medical device like a catheter sterilizer should be as well.

Test Drive generates most of the environmental impacts of Unbound. Connecting individuals with used durable medical supplies decreases unnecessary waste by efficiently allocating resources and connecting people who need physical assets with people who have them.

There is the potentially negative impact of shipping goods around the United States, but this ought to be offset by an overall reduction in the creation of poorly fitted medical equipment. CleanCath may potentially cut down on catheter use by introducing an element of catheter reusability in a clinically safe and effective way, decreasing the overall demand for catheters.

Economically, Unbound is steeped in the esoteric territory of insurance payments and healthcare expenditure. In creating a used medical supply exchange in a patient to patient context, Test Drive ought to reduce economic waste in its reduction of spending on poorly-fitted equipment. CleanCath may change how insurance covers spending on catheters because it introduces an element of reusability into what was previously a disposable medical product. Unbound also explores the potential for apps to become a part of the insurance landscape. If an app like Journey improves patient outcomes, it is possible that a case could be made for its funding by insurance programs.

While these potential impacts have yet to be realized, as of the time of this writing, I can say that I am grateful that I was able to embark on this year-long design journey. I am proud of the work that I’ve completed to date, and I am excited to see where it will lead me next.

301 Looking Forward

302

Acknowledgements

With special thanks to: Carina Ho, for trusting me Sinclair Scott Smith, for believing in me Allan Chochinov, for guiding me and to: Sudeep Paul Supriya Paul Swapan Paul Jennifer Kim Jonathan Lung Marianna Mezhibovskaya Natsuki Hayashi Adem Önalan Eden Lew and the rest of the Products of Design Class of 2016 as well as the Products of Design Classes of 2014, 2015, and 2017 Abby Covert Brent Arnold Emilie Baltz Janna Gilbert Stephen Dean Andrew Schloss Michael Chung Alisha Wessler Gabrielle Kellner Marko Manriquez and the rest of the Products of Design Faculty

303 Acknowledgements

If you’ve made it to the end of this book, then you’re probably someone that I care about deeply. Thank you for your support over the last two years, as I traded in the lucrative paycheck promised by finance for something more uncertain, but altogether much more fulfilling.

304

Appendix A — Subject Matter Expert Interviews

305 Appendix A — Subject Matter Expert Interviews

In this section, I’ve compiled key points and pull quotes from the subject matter expert interviews completed during the discovery phase of the thesis. The occupation of the subject matter experts is included based on how relevant it was to the interview. Interviews are sorted thematically, beginning with wheelchair users and their family members before moving on to care providers, and ending with researchers and product developers.

306

“I don’t want to be people’s inspiration.”

Carina Ho

Recently Injured Paraplegic Carina needed to adjust to no longer being independent — it was a physical and mental blow for her.

Sensation below the level of injury is different for everyone. For Carina, the sensation is similar to prickling or burning.

The first wheelchair you get and the loaner chair that you use after the injury are the two worst wheelchairs that you’ll ever own.

307

Bonnie Lewkowicz

Quadriplegic and Wheelchair Activist Medicare only covers wheelchairs for indoor use; it doesn’t cover anything needed for outdoor use.

Disabled people are usually portrayed as pathetic or inspirational, when most people fall in between.

Playing sports was a way for her to find her life and make it more satisfying.

When buying a wheelchair, you can’t test drive them.

Appendix A — Subject Matter Expert Interviews

“It’s exhausting always having to prove that you’re just a person.”

308

“When you’re a fall risk, there’s an element of insecurity when you’re transferring... there is a great deal of psychological trauma that goes with the inability to do something.”

Mark Angle Quadriplegic

There’s a world of assistive devices out there that I need to explore and become familiar with.

No shower chairs seem stable enough. With a broader base and a swivel seat, they’d be easier and safer to use.

There’s a sense of social and physical isolation that you experience as a mobility impaired person — how do you get a person back into their social system?

309

Kunho Kim

Paraplegic and Disability Travel Writer In a college setting, Kunho can’t really visit his friends in their dorm rooms; he has to have them come visit him.

Any event that he wants to go to requires a lot of advance planning and emailing; he can’t just decide to go to something last minute.

In a manual wheelchair, brick and cobblestone pathways pose a problem — the front casters tend to get stuck.

He wishes there were snow tires or wheelchairs specifically designed for use in the snow so people could move around better.

Appendix A — Subject Matter Expert Interviews

“In the winter, it’s so difficult to maneuver around in the snow — my hands get wet and frozen.”

310

“Accessibility works best when it’s part of the DNA of the city.

Retrofitting is harder to do.”

Quemuel ‘Q’ Arroyo

Paraplegic and Policy Analyst at the New York City Department of Transportation Airbnb doesn’t indicate accessibility of its listings, so Q has to stick to booking hotels.

He felt alienated and marginalized after his injury, but knows both sides of the coin. He knows that this isn’t because abled people intentionally try to alienate him; it’s due to lack of awareness and fear.

Q is insanely active, and travels a lot, a lot of which is due to his stubbornness. His mindset is that he was born abled, so he’ll do anything that he used to be able to do.

311

Walter Delson

Paraplegic and Rehab Therapist Being able to go down stairs in a wheelchair would be amazing, because stairs are unavoidable.

It’s hard to get cardio as someone with SCI/D — cardio usually involves the use of legs, not of arms.

Christopher Reeve brought a lot of attention to SCI/D, but in some ways his emphasis on finding a cure was damaging.

If SCI/D got the funding that HIV gets, there would be a cure in 5 years.

Appendix A — Subject Matter Expert Interviews

“The unspoken message was ‘the world is not for you.’”

312

“What is my self worth?”

Lily Chen

Wheelchair User with Cerebral Palsy Lily feels discriminated against when it comes to job interviews — employers think that because she has a disability, she isn’t adequate.

After a long period of depression, Lily rediscovered her identity and found that it was inseparable from her cerebral palsy.

The Taiwanese accessibility movement is quite young, and Taiwanese attitudes toward law are quite different than in the United States.

313

Chris Pangilinan

Wheelchair User with Cerebral Palsy The utility of a wheelchair outweighs the negative; but using one is a huge limitation with respect to accessibility.

Things will fall out of Chris’ lap if he tries to go down a curb cut; he has to place them on the curb, go down, and then retrieve them.

Not standing is a huge career disadvantage.

There are no direct to consumer wheelchair parts dealers.

Appendix A — Subject Matter Expert Interviews

“People who are sitting are less participatory in society.”

314

“I try not to be sad around her, but sometimes it gets overwhelming at night.”

Rose Martin

Mother of Quadriplegic Lifting her daughter [who is 104 pounds] is very strenuous, but Rose still does it sometimes when she is in a rush.

Their home is accessible in the entrance, but the bathroom isn’t accessible. When they move into a new house, they’ll make sure that it is.

Her daughter will only let her mother or her grandmother assist with bowel movements.

Her daughter uses a power chair in the house, and a manual chair outside, because it’s not easy to take the power chair onto a car or a van.

315

Brittany Martin Déjean

AbleThrive Founder & Executive Director Her father’s success in recovery was a matter of luck — of being surrounded by the right people at the right time.

Wheelchair bound is terminology that is considered offensive to the disabled population.

Disabled people are represented in the news only if they are climbing mountains or overcoming them.

Appendix A — Subject Matter Expert Interviews

“When you have a disability, you’re fighting in your own corner.”

316

Angela Riccobono, md

Doctor and Co-Leader of Mt. Sinai SCI/D Support Group Dr. Riccobono runs a support group at Mt. Sinai for people with SCI/D. It is comprised of in-patients and out-patients. The in-patients see the out-patients as role models, and the out-patients see just how far they’ve come since their accident.

Dr. Riccobono is going to help me run a co-design workshop with her group.

317 Appendix A — Subject Matter Expert Interviews

Plas T. James, md

Neurosurgeon at the Atlanta Spine Institute Dr. James specializes in elective spinal surgeries — vertebrae fusions, device implantations, etc.

Shepard Rehab is the regional spinal rehab center near Atlanta, GA. This interview served as a networking call — as a connection to other neuro surgeons and experts.

318

“There is not enough money or research for a cure. The emphasis has to be on adaptation.”

Camilo M. Castillo, md

SCI/D Physician at MedStar National Rehabilitation Hospital The spinal cord regenerates but is inefficient because it only receives blood from 3 blood vessels/arteries.

Anything that is to be done, has to be done at the beginning of the injury — in chronic patients, the damage has already been done.

It is important to keep SCI/D patients moving.

Most of the conversation goes to bowel and bladder control, as well as pain and sexuality.

319

Oluwole Awosika, md

Neurologist at National Rehab Hospital There is a rating system for severity of SCI/D that runs from ASIA-A [the worst] to ASIA-E. Moving from ASIA-A to ASIA-C is almost unheard of, but people do sometimes move from ASIA-B to ASIA-D. The University of Louisville is working on spinal electrode implants to help people regain their spinal function.

Dr. Awosika’s research focuses on using 2 9V batteries to apply a voltage externally to the spinal cord. He is trying to take advantage of neural plasticity to rewire the central nervous system.

Appendix A — Subject Matter Expert Interviews

“We’re still 10, 20, 30 years away from a cure. The transferability of results from animals to humans is questionable.”

320

“For some people, the worst notion of being in a wheelchair is the notion of elimination.”

Barry McCasland, md

Neurologist at St. Joseph’s Hospital There are commercially available bladder stimulators, but they’re not MRI compatible which is a huge problem.

Aggressive and early rehabilitation make a world of difference in patient outcomes and return of mobility.

Biomedical engineers need to be pressured into addressing the unmet needs of the user.

321

Katsura Kobayashi

Certified Occupational Therapy Assistant at Santa Clara Valley Medical

Earl Bowser

Quadriplegic, Physical Therapy Assistant, and Wheelchair Athlete Fresh SCI/D patients tend to see FES as a key point in their recovery. Treatment in the past used to really emphasize adaptation over recovery; now a lot of patients won’t put a lot of effort into their therapy because they think they’ll walk again soon.

Playing rugby, and the peer support that came with it was the most important part of Earl’s recovery.

Sports aren’t for everyone — the need is to find your passion and pursue it.

If you can accept how you are today, any steps forward will be a source of happiness.

Appendix A — Subject Matter Expert Interviews

“Fresh patients often view FES technology as the key to their treatment, so that they may eventually walk again, instead of focusing on adaptation and adjusting to their change in ability.”

322

“People are creative — they figure out how to do things on their own.”

Laura Kwun

Occupational Therapist Giving people the ability to store things on their wheelchair could change their center of balance, affecting their mobility.

Transfers put a lot of wear and tear on the joints, and if you lose dexterity, you can’t do anything.

When it comes to technologies like a hands-free wheelchair, there’s a tension between maintaining a healthy weight through exercise and protecting the joints.

323

Mary Simonson

Occupational Therapist at Santa Clara Valley Medical There are three tiers of patients — Tier 1 includes patients who have been discharged within the last year, Tier 2 includes patients who have been out for between 1 to 5 years, and Tier 3 includes patients who have been out for 5+ years.

The occupational therapy begins after discharge so that patients begin to see how they will live life with their injury. They are more motivated and can come in with specific needs/questions.

Insurance rules are getting tighter and stricter, but it has to be this way because of fraudulent activity.

Appendix A — Subject Matter Expert Interviews

“If you modify the entire home for a patient, you have trapped them. They can’t function elsewhere independently.”

324

“No two injuries are the same.”

Carrie Ellis

Physical Therapist at Santa Clara Valley Medical An occupational therapist works on “activities of daily living” with the patient; a physical therapist works on movement.

There’s a lot of new equipment with crazy technology, but what will insurance pay for? Billing is done in 15 minute increments, with itemized segments on the bill.

A lot of patients can’t afford standing frames, and insurance won’t pay for it.

You need a special chair to wheel around on a surface like sand.

325

Erin Hallet

Physical Therapist at UCSF Medical Center Erin has co-started the No Limits Collaborative, a non-profit that bridges the gaps in continuity of care between stages of rehabilitation.

A lot people close off options for themselves because they simply don’t know how to get involved.

SCI/D research is not robust — it’s really hard to standardize anything or replicate results.

Instilling continuous hope is the most important thing.

The insurance paradigm is reactionary, not preventative.

Appendix A — Subject Matter Expert Interviews

“There is no limit to what you can do if you put in the time. The question is how long it’ll take.

It’ll be up to you, where your resources run out.”

326

“Physical therapy is so boring.”

Chloe Moore

Hippo-therapist at Santa Clara Valley Medical Hippo-therapy was first developed in the 1990s. In hippotherapy, patients are matched with horses so that the horse and the patient can develop a relationship with one another. The hippo-therapist and side walkers will help the patient move around with the horse.

Riding horses engages the core muscles and can help restore muscle tone even if they are below the level of injury.

Patients see faster progress with hippo-therapy because it is more fun than traditional physical therapy.

327

Eric Posen

Naturopathic Therapist Eric practices a holistic medical approach that considers the patient’s physical, mental, and emotional health when treating her.

The nature of healing can occur on a mechanical level [i.e. bones, etc.], a biological level [nourishment and the removal of waste and toxicity], and an energetic level [addressing the life force that animates all of us].

Trauma is like an onion, with obvious surface-level manifestations as well as deeper core issues. Many medical practices aim to treat the surface level manifestations of trauma.

Appendix A — Subject Matter Expert Interviews

“You can bulldoze your way through anything, but it doesn’t work as well.”

328

“Smart sensing technology in wheelchairs is pretty gimmicky; it’ll only be useful for the first few months.”

Joe Sciara

Regional Manager at Access Medical, Inc. Joe works with the doctor, the occupational therapist and the physical therapist in order to design the optimal wheelchair for a patient.

Skin care is a huge part of wheelchair design for a patient.

A rigid wheelchair with modular components can be adjusted over time.

Titanium is becoming a popular wheelchair material choice, but it isn’t covered by insurance. Aluminum is the standard, and is covered.

Frame design is becoming less about the frame and more about support strength.

329

Eric Grantham

Licensed Orthotist There is a ton of specialized hardware and terminology in the orthotics field.

Most of these tools are implants that are used to stabilize the spinal column after an accident.

He works with surgeons to determine the patient’s need and supplies the hardware needed.

Appendix A — Subject Matter Expert Interviews

“Many times, we’re trying to span the compromised level to create a stress shielding at the compromised level.“

330

“Brain control is too young; exos are not a reality for those who are motor impaired.“

Konlin Shen

Electrical Engineering Graduate Student at University of California: Berkeley Current exoskeletons use the “drunk man” model — every motion performed by the user is amplified a lot by the exoskeleton.

There is a workaround based on upper body movement, but it’s hard to capture all of the different types of motion in that interface.

His dissertation work focuses on neural interfaces, and using acoustophysiology instead of electrophysiology to monitor changes in neurons.

331

Aimee Wang

Medical Student & Spinal Cord Researcher at Harvard Medical School Muscle atrophy from lack of use due to a disruption in the CNS generally doesn’t occur.

Implantable pulse generators exist to manage bladder spasticity.

Her lab’s work centers on using prosthetics to bridge nervous system disruptions.

Appendix A — Subject Matter Expert Interviews

“Cortical circuits are very adaptable. They don’t connect what was disrupted; they create a new circuit.“

332

“The less you have to extract from neural activity, the better it is.“

Ryan Neely

Neuroscience Graduate Student at University of California: Berkeley Ryan’s implants electrodes into rat brains and trains them to control the pitch of an auditory tone using their neural activity.

There is work being done on a neural dust application for incontinence, but that’s still 5 to 10 years away.

There is a lot of axon movement in the nervous system, which makes it really hard to accurately stimulate parts of the brain with knowledge of what the result will be.

Different parts of the central nervous system control different aspects of motion.

333

Darius Parvin

Motor Control Graduate Student at Berkeley When the brain controls movement, it is predicting what it will see and feel. When sensory information matches up with the brain’s expectations, it knows that your body did the right thing. When there’s a mismatch, you get a sensory prediction error which causes you to recalibrate your movements.

There is no feedback from the exoskeleton to the brain — it’s like having a new limb as an adult, without the benefit of a model of control.

Brain machine interface provides a very crude measure of brain activity.

Appendix A — Subject Matter Expert Interviews

“You can’t learn how to ride a bike from reading a book — it’s a different part of the brain, with different learning.“

334

“When I’m in my exoskeleton, I don’t feel like a robot because it’s so much lighter than the others.“

Steve Sanchez

Machinist at University of California: Berkeley Robotics and Human Engineering Laboratory Falling is a major concern for most exoskeletons because they’re so heavy [50—60 pounds]. The one that is being developed at Berkeley is half the weight.

They’re still trying to figure out stairs; for now, the suit is meant to be used primarily for therapy.

The exoskeleton developed at Berkeley only uses two motors at the hips, has a fixed ankle, and wrapspring brakes at the knees.

I need to check out the Abilities Expo when it comes to New Jersey.

335

Dominic Southgate

Dyson School of Design Engineering Director of Post Graduate Studies The Cybathlon is a planned international sporting competition for disabled athletes using bionic assistive technology.

When designing prosthesis, the materials that are most commonly used are silicone and carbon fiber.

There is a heavy focus of user-centered design in the development of equipment for para-athletes.

Appendix A — Subject Matter Expert Interviews

“It’s easy to focus on big bits of hardware, but the best projects come from designing more subtle things; helping people use their existing products.”

336

“We didn’t have the resources to conduct all of the necessary tests to bring it to market.”

Ming Kong

Product Designer on Team Bruise, a design team that developed athletic apparel for paralyzed athletes that visualizes injury Before using silicone inserts, his team tried to use industry standard force sensors — but the electronics were too complicated and too expensive.

Team Bruise consisted of a team of two designers, one business person and a mechanical engineer.

It’s pretty discouraging that he and his team had such a cool/great product but ended up not producing it or making it real.

337

Rajen Kumar

Senior R&D Engineer at Medtronic It took Medtronic 12 years to develop a new stent. The idea was seeded in 2007 and 2008; by the time that Rajen joined the process in 2011, it was still in the early stages.

The idea takes the longest time to develop, but afterwards there are clinical pre-studies, human feasibility studies and animal trials.

Medtronic makes stimulators for incontinence.

Appendix A — Subject Matter Expert Interviews

“Once you get to the quickest or easiest proof of feasibility and manufacturability, the rest will fall into place.“

338

Appendix B — Futuring Scenarios

Utopian Scenario 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.

339 Appendix B ­—­Futuring Scenarios

In this section, I’ve included the futuring stories that aided in the development of the CleanCath. Both stories are set in 2075 and present radically different versions of how the world might turn out.

340

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

341 Appendix B ­—­Futuring Scenarios

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.

342

Dystopian Scenario 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

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.

343 Appendix B ­—­Futuring Scenarios

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.

344

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.

345 Appendix B ­—­Futuring Scenarios

346

Endnotes

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2

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3

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4

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5

King, Barbara J. “‘Disabled’: Just #SayTheWord.” NPR.org. NPR, 25 Feb. 2016. Web.

6

Ibid.

7

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8

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9

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10

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11

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12

Ibid.

13

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14

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Lupton, Ellen. Beautiful Users: Designing for People. Princeton, NJ: Princeton

16

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18

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350

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60

Downing, Tricia. Cycle of Hope: A Journey from Paralysis to Possibility. Gold

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64

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96

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97

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99

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