Unbound Pt 1

Unbound Psychophysical Design for Paralysis and Disability

By Souvik Paul

Š Copyright 2016 by Souvik Paul All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission in writing from the author.

For inquiries, contact souvik.paul@post.harvard.edu souvikpaul.com/mfa-thesis/ School of Visual Arts MFA Products of Design 136 West 21st Street New York, NY 10011-3213 productsofdesign.sva.edu

Souvik Paul Author Designer Allan Chochinov Chair, MFA Products of Design at SVA Andrew Schloss Thesis I Instructor Abby Covert Thesis II Instructor Minji Kim Editor Jennifer Kim Editor

In memory of Candice.

Table of Contents Introduction

6

Goals, Design Principles, and Statement of Purpose

10

Lexicon of Terms Used

14

Audience

18

Department Philosophy, Positioning, and Methodology

22

Discovery: Design Research

32

Definition: Design Sprints

46

Problem Definition

178

Development: Experiential Research

184

Deployment: Final Thesis Output

190

Looking Forward

298

Acknowledgements

302

Appendix A: Interviews

304

Appendix B: Futuring Stories

338

Endnotes

346

Bibliography

354

6

Introduction

Personal Design Philosophy

The Accident That ambition would be challenged before I even got to Products of Design. On August 15th, 2014, my thengirlfriend Serena was in a car driving down a California interstate when her car was violently rear-ended by a tractor trailer. Traveling in the car with her were her sister Carina, her mother Candice, and her mother’s boyfriend Gerry. While Serena managed to escape the accident with a broken hip and a slightly fractured vertebra, the other passengers were not as lucky.

Carina sustained what we would learn to be a complete spinal cord injury to the T2/T3 region of her spine; Gerry broke his neck, sustained brain damage, particularly to the nerves that control speech, swallowing, and taste, and would be in and out of a coma for the weeks following the accident; Candice passed away within an hour of the accident.

Introduction

When I made the decision to apply to design school, I had grandiose ideas of what design could do. I originally had no idea that design existed as a field outside of graphic design, until I took a class at my university’s Graduate School of Design as a second semester senior in undergrad. But there was something in that class that stuck with me while I worked as an equity finance trader in JPMorgan’s Prime Brokerage business. I began to see design as necessary for technological advancement — if the predominant technological thrust of the 1990s and early 2000s was to transfer information from isolated hard drives and servers onto the Internet, the principal technological development in the years since then has been to fundamentally alter the method with which people interact with the information that is now publicly available. I believed in design’s unique capacity to create change — from social impact projects that delivered fresh water to remote rural villages, to the iPhone, a for-profit product that fundamentally altered the fabric of society. I wanted to go to graduate school in order to develop that skill set for myself, to do what I couldn’t in a lucrative but personally unfulfilling field like finance — make real change in the world.

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Carina in her wheelchair, with a picture of the wrecked SVU.

The Conclusion This thesis isn’t just about Carina though. It’s not as selfless as that. Being in the hospital after the accident, I felt small and powerless. The lives and worlds of people that I cared for immensely had just irrevocably changed, and there was nothing that I could do to help them, even though I wanted nothing more in the world than to be able to. Design was one of the only things that helped me make sense of the accident.

Designing for spinal cord injuries has been my way of learning how to be optimistic and to reverse that feeling of helplessness. It’s been my way of coming to terms with the accident and of doing something, anything, in response to it. All of the experiences that I’ve had in the preparation of this thesis have been a way for me to recapture my own sense of agency in the face of overwhelming tragedy. Design is one of the only things that has made me, in some small way, feel like I could do something to help. It’s hard for me to put into words how meaningful that small seed of hope has been for me, but I’m not entirely surprised. Design is, after all, an optimistic process, and one that can change lives for the better.

9 Introduction

I found out about the accident a day after it happened, flew out to California, and spent the next two weeks in and out of the hospital with Serena.

I saw how devastated Carina was at her diagnosis, and how difficult it was for her to adapt to her new circumstances — both physically and emotionally. I saw how devastated Serena and the rest of her family were.

I was personally upset by the passing of someone who had only ever been considerate to me, and considered postponing graduate school in order to help Serena and her family recover. In the end, after discussing it with Serena, I decided to come to graduate school but resolved to put my faith in design to the test. If design was as remarkable and powerful as I believed it to be, I could use it to help make Carina’s new life easier.

10

Goals, Design Principles, and Statement of Purpose

Through the course of my research on spinal cord injury and product development, I came to understand that when a person sustains a spinal cord injury, their treatment is seen through a lens of restoration, not of empowerment. Integrating a focus on empowerment in treatment is absolutely critical once the physical condition of patients has been stabilized. Spinal cord injury has significant physical and psychological impacts on the patient.

When patients leave the hospital, it is as if they can’t escape the hospital. Someone who is newly disabled is constantly reminded of her otherness, not only because of her interactions with other people but also because of her interactions with objects that she is newly reliant upon. Wheelchairs, standing frames, shower chairs — these products universally embody the aesthetics of medical devices. In doing so, they alienate the user and dehumanize her.

The products, apps, and services developed for spinal cord injury must therefore be humanized if they are to empower. They must contrast with hospital aesthetics, which otherwise constantly reminds patients how irrevocably altered their lives are. Their design language must be emotional instead of sterile, living instead of life-less. The design work in this thesis rejects the predominant aesthetics of design for medicine and disability. Instead of adopting the sterile white and teal colorway of medical devices, this thesis recognizes that in the case of chronic illness or injury, a medical device is a lifestyle product and ought to be designed as such.

11 Goals, Design Principles, and Statement of Purpose

My goal for this thesis was to develop products, apps, and services for individuals with spinal cord injuries and their families and support networks. As the outcome of a year-long, user-centered design process, these products were designed to address both the physical and psychological needs of the spinal cord injured community.

After the conclusion of the thesis, I hope to gain enough conceptual and developmental traction with my prototypes to make their full-scale production conceivable.

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This book is an account of the journey that brought me to this realization. It begins with a brief lexicon of words used throughout the book, before moving onto a description of the audience and market that the thesis was designed for. A section on methodology follows. A literature review gives the reader background on the topic before the design work is discussed. The design work is separated into four parts: discovery, definition, development and delivery. Afterwards, a concluding section delineates how the thesis will develop further.

13 Goals, Design Principles, and Statement of Purpose

14

Lexicon of Terms Used

Abled

Ableism Ableism is the discrimination or prejudice against disabled individuals.1 Abnormal Abnormal is defined as different from what is normal or average: unusual especially in a way that causes problems.

Disability Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; a participation restriction is a problem experienced by an individual in involvement in life situations. Most individuals will experience some form of disability within the course of their lives.2 The difference between an impairment, an activity limitation, and a participation restriction is one of scale and context. An impairment refers to the physical, biological reality of the disability — i.e. what is causing that disability. In the case of drinking alcohol and driving, the impairment is what prevents a person who is drunk from having enough coordination to drive. It is the amount of alcohol in the brain that makes someone uncoordinated. The activity limitation is how that lack of coordination prevents someone from operating machinery, whereas the participation

Lexicon of Terms Used

Abled is an alternate term to “able-bodied”. I prefer this term to able-bodied because it helps to establish an absence of responsibility for lacking a physical, mental, or cognitive disability. If someone is “abled” that means that her level of ability has happened to her, that it is a condition that she receives and otherwise has little say over. My status as an abled person is due to factors outside of my control, just as a disabled person is disabled due to factors outside of their control.

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restriction refers to the specific laws and mores that prevent that person from driving — the social and legal rules built up around that specific situation which falls into the realm of governance.

Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between a person’s body and the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.3 Re-contextualizing what disabilities actually mean is important in ultimately addressing the root causes of the social and environmental barriers that one might face with a disability.

Disabled Disabled means having a physical or mental disability — unable to perform one or more natural activities [such as walking or seeing] because of illness, injury, etc.4 There are many alternatives to the term disability — “handicapped, handi-capable, disabled, differentlyabled, and a person with a disability”.5 For Unbound, I’ve decided to use the word “disabled” because of the terms listed above, it is the least problematic with respect to the lived experience of disability.

I understand why “person with a disability” or “differently-abled” are appealing terms; the former recognizes that a disability exists separately from the person and that the person in question isn’t necessarily defined by their experience with disability. Both terms, however, inadvertently minimize disability. Lawrence Carter-Long explicates: “Perspective. In 2016, anyone who would dare to assert that race ‘doesn’t matter’ or that they ‘see the person not the gender’ would instantly, and I think rightfully, be called out as either naive or ignorant. Similarly, to suggest disability is simply a ‘difference’ and has no impact on a person’s life is a very privileged position to take. Most disabled people don’t have that luxury. The assertion flies in the face of reality and minimizes the very real discrimination disabled people face”. 6

Paralysis

Personhood Also known as agency, personhood is the ability of a person to be self-determining, to take their fate into their own hands and to exercise control over their lives. Because of the traumatic nature of spinal cord injury, a person’s sense of agency or personhood can be completely and irrevocably altered in the aftermath of their injury. A lot of the existing treatment method for spinal cord injury and trauma ignore this aspect of the damage, or simply do too little to counter it.

Psychophysical Psychophysical refers to the the branch of psychology that deals with the relationships between physical stimuli and resulting sensations and mental states.8 Products have psychic lives and are therefore psychophysical. There is an aspect of an individual’s interaction with specific products that transcends function and invokes memory and preference, whether that product is a favorite t-shirt, arm chair, bicycle, or shoes. These things are never thrown away, no matter how old they become, because of the history associated with them. These objects are usually associated with a specific memory or feeling that’s tied to a person’s past or that person’s conception of who he or she wants to be.

Spinal Cord Injury/Disability [SCI/D] A spinal cord injury entails damage to any part of the spinal cord or nerves at the end of the spinal canal and often causes permanent changes in strength, sensation, and other body functions below the site of the injury.7

Lexicon of Terms Used

Paralysis is defined as the complete or partial loss of function, especially when involving the motion or sensation in a part of the body; the loss of the ability to move; a state of powerlessness or incapacity to act.7 It is defined as the absence of motion or sensation, not as the presence of altered sensation. People with SCI/D can feel their paralysis, which manifests itself idiosyncratically in everyone.

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Audience

In the course of my interviews with subject matter experts, I spoke to neurosurgeons, physical therapists, occupational therapists, rehabilitative therapists, hippo-therapists, registered nurses, Ph.D. level graduate students studying biology, neurology, and engineering, social entrepreneurs, wheelchair users, wheelchair activists, prosthesis specialists, wheelchair specialists, and exoskeleton developers.

The three end-user groups that I am targeting are people with spinal cord injuries, doctors and medical staff, and medical suppliers.

People with SCI/D — Every spinal cord injury is different. Two people with the exact same injury in the exact same location can have dramatically different rehabilitative outcomes. Designing for this group as a whole carries with it some challenges — especially because designing for the entire group, and not the individuals within it, seems tantamount to minimizing individual suffering, of describing an emotional, psychological and physical trauma in general terms that don’t capture as much nuance as might be warranted by the severity of the user’s experience. I’m wary of perpetuating ableism — I don’t want to reduce people with spinal cord injuries to “people in wheelchairs” or “disabled people”. Many of my early interviews with people with SCI/D highlighted how exclusionary the environment still is, even 25 years after the passage of the Americans with Disability Act [ADA], to people in wheelchairs, and how people with spinal cord injuries are either hailed as heroes or disregarded as less than human. A lot of my interviewees simply wanted to be regarded as normal. It was only later that I realized that this reflected the ableist mindset of society at large and its tendency to see people with disabilities as less capable.

Doctors and medical staff — One of the primary ways in which doctors and medical staff differ from one another, as demonstrated in the interviews that I’ve

19 Audience

In this section, I identify the participants, stakeholders, and end-users of the work contained in Unbound.

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conducted, are the extent to which they accept and advocate for alternative forms of treatment and therapy.

I encountered doctors who were completely supportive of a product design thesis designed to help people with spinal cord injuries — but I also encountered those that were completely skeptical. My design work needs to meet the approval of doctors and other medical staff in order to be able to more effectively reach people with spinal cord injuries.

Medical suppliers — I only managed to interview two or three people from a medical supply company, despite my efforts to contact more of them. These corporations tend to be massive in order to pay for the R&D that goes into product development, patent protection and various legal fees. The sheer scope of bureaucracy involved is one of the reasons that it was so challenging to connect with people in this industry. As a result of my interviews, I gained some perspective into what it takes to get a product from conception to launch — the sheer amount of time and legwork that are necessary.

21 Audience

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Department Philosophy, Positioning, and Methodology

Department Philosophy Products of Design is a brand new design MFA at the School of Visual Arts, and I, a member of the class of 2016, am part of the third class to ever graduate from the program. When the chair of our department, Allan Chochinov, was approached to head a new product/ industrial design program at SVA, he questioned whether or not another industrial design program would be beneficial to society. He ultimately decided to start one after realizing that product designers are actually not in the artifact business; instead they are in the consequence business. Chochinov reasoned that designers, who differ from artists in their intent and ambition for mass production, have a responsibility to be explicitly conscious of their design decisions because each of their decisions gets multiplied by a million times when their products are fabricated and sold.

At the same time, this aspiration towards mass production imbues designers with a unique ability.

Because their designs and decisions can potentially impact millions of people, designers have the potential to influence and dictate behaviors. By creating certain products, designers can condone certain behaviors and attitudes, and condemn others.

The second part of Chochinov’s philosophy revolves around the idea that in today’s world, mono-curricular thinking is not worth teaching. A product designer in today’s world needs to know graphic design and branding, to give her product a distinct identity in the marketplace. She needs to have a business plan and

23 Department Philosophy, Positioning, and Methodology

In order to familiarize readers with the unique approach of the department, as well as the breadth of the final design offerings of the thesis, this section begins with a description of the Products of Design department philosophy. It then moves on to a discussion of how I positioned my role of thesis investigator relative to the audience of my thesis. It concludes with a description of the three key methodologies that were employed in the completion of Unbound: futuring, universal design, and the double-diamond.

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understand complex supply chain systems. The thesis is a manifestation of this philosophy, and includes a variety of design work completed in different design media, reflecting the multi-curricular philosophy of the Products of Design department.

Positioning In the field of cultural anthropology, the concepts of emic and etic10 refer to the positioning of the investigator with respect to the population that he or she is investigating. In the course of developing my thesis, I’ve struggled where it fits into this binary positioning.

By way of analogy, there are many ways that the emic-etic dichotomy can be framed relative to each other: insideroutsider; cultural-scientific; subjective-objective. An emic account is one that is observed from within the culture, within the subject of observation.

An emic observer brings into play the biases and cultural norms inherent in the very object of study. By contrast, an etic account describes the object of study from without, with a very deliberate aim of describing things impartially, as they are, sans bias.

As I’ve been designing products, experiences, apps, and services for Unbound, I have, at times, taken a step back to try to understand how I can design for a community of which I’m not a part. There is an irony in the fact that I am an abled person that is designing for the SCI/D community with the stated goal of making treatment of SCI/D more empowering and self-led.

Design is, however, a user-centered process that relies on empathy, which is the primary tool in the designer’s toolkit. In practicing empathy, I have been able to channel the needs and desires of my users to create something that is “self-led” in concept, if not in practice. As the friend and supporter of someone with an SCI/D, I have been able to take on a unique perspective that is more ‘emtic’ than emic or etic, a hybrid approach that does not neatly fall into either category. My emotional attachment to the SCI/D community and my physical status that simultaneously marks me as an

Methodology The first two methodological frameworks discussed in this section describe methodologies that were utilized at different points in the development of Unbound. The last methodology explains the methodology that was used to structure the entire thesis.

Futuring Futuring is a design method within the practice of critical design. Critical design is a design practice in which concepts and speculation are the media, in the same way that physical materials are the media of product design.

By designing physical products for future scenarios, designers bring those scenarios to the present and make them comprehensible; it becomes easier to understand the future — what it might be and what it might imply.

Futuring relies on the power of storytelling and uses physical product models to raise questions about modern society. Being able to physically hold a product that supposedly exists in the world of the future lends that world a tactility and reality that makes abstract questions concrete and immediate. The reason that design is so well poised to create visions of possible futures that incite thought and action in people is because design outputs real objects and things used everyday. By designing real and quotidian products that exist in future worlds, designers make those future worlds believable.

Designing with these future scenarios in mind also frees designers from practical constraints so that they can dream up objects and technologies without worrying about the specific engineering or technology needed for the future products.

There are frameworks for building and understanding these future scenarios. Anthony Dunne and Fiona Raby,

25 Department Philosophy, Positioning, and Methodology

outsider have both influenced this thesis and how it, as a tool of inquiry, is positioned relative to the SCI/D community.

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prominent thinkers responsible for the popularization of critical design, have written at length about the Cones of Preferable Futures which consists of 4 overlapping cones — the probable future, the plausible future [an outcome that is unlikely, but still within the scope of imagination and attainable through concerted effort — like world peace], the possible future [anything at all that is possible under the current laws of physics], and the preferable future [which lies somewhere between the probable and the plausible].11

Another useful futuring framework is the STEEP framework [Social, Technological, Economical, Environmental, Political]. This framework supplies designers with details that fall into each of these 5 categories about the future world that they are designing for. The STEEP framework gives designers more structure and context than the Cones of Preferable Futures, and is therefore easier for non-designers to understand and respond to. It limits designers to one specific futuring scenario, whereas the Cones of the Preferable Futures encompasses multiple possible The Cone of Preferable futures, from Speculative Everything.12

Universal Design Universal Design is a methodology within design that originated in the 1960s and 1970s that emphasized design for all people regardless of physical ability or age.

Under this methodology, people are only disabled insofar as there are obstacles in the environment that render them so, as a result of bad design: “some disabilities are permanent and others are temporary, but all are exacerbated by poor design decisions.”13 In his TED talk, Hugh Herr, professor at the MIT Medialab furthers, “our built environments, our technologies, are broken and disabled. We the people need not accept our limitations, but can transcend disability through technological innovation.”14 By removing these environmental and technological obstacles through a user-centered design process, disability can be eliminated.

The products created through the application of universal design aren’t solely for disabled people.

Instead, proponents of universal design argue that products designed with increased usability for people with disabilities are more usable by the general population as well. The popular OXO brand of kitchen tools is an archetypical example of this. These tools were originally created by designer Sam Farber and the design consultancy Smart Design for Farber’s arthritic wife, who found it difficult to use generic vegetable peelers. As a part of the design process, the design team considered different materials and forms for the handles of the kitchen tools that they were designing, ultimately settling on a black rubber handle.15 The success of the OXO brand and its expansion into medical devices and children’s tools help to illustrate that improving the product experience for disabled users also improves the product experience for abled users.

27 Department Philosophy, Positioning, and Methodology

futures. Both frameworks were utilized throughout the course of the thesis in order to extrapolate current issues of accessibility into the future. In particular, futuring was used as a ideological framework in the codesigning workshops and in the development of the final thesis product — the CleanCath.

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Another core universal design principle maintains that well-designed objects humanize the experience of assistive devices. People are more likely to use beautiful and convenient mobility aids and medical products, thus improving their health.16 My methodological approach for the thesis borrows from concepts that Graham Pullin discusses when describing the approach of his book, Design meets Disability.

Instead of advocating for using design to make disability disappear, Pullin argues for the inclusion of aesthetic flourishes that make design for disability more noticeable and elevate it into a type of fashion design. His book “touches on [universal] design, which brings issues of disability into mainstream design, but spends more time looking in the opposite direction, examining what would be gained by bringing an art school design culture to products specifically for disabled people.”17 He describes different design approaches for a variety of disabilities, but recontextualizes the design work so that aesthetic consideration is as important as technical performance.

When starting my thesis, I originally eschewed aesthetics as a primary concern, disparaging design processes that prioritized the creation of beauty over the creation of function. Pullin’s book made me realize that it was especially within the context of design for disability that aesthetics had a functional purpose itself. The daily touch points of disability — the products, the services, and even the environments that disabled users interact with — predominantly serve to remind people of their disability, to remind them that they are abnormal. The products that they interact with are aesthetically reminiscent of the hospital; the services that they interact with remind them that they can not, for instance, take the subway and must rely on a shuttle bus instead; the environments highlight their disability by forcing them to take an alternate handicapped entrance.

Aesthetics is significant in the design of “normal” products, services, and environments, but is an afterthought in design for disability. The function of aesthetics in design for disability is to humanize disability instead of constantly treating it as an Opposite, the Double Diamond Methodology; diagram from Creative Industries.19

The Double Diamond Methodology The double diamond methodology is a popular design methodology that I employed for Unbound. This methodology entails two distinct phases of design work.

The first is defined by discovery and definition. Much of the effort in this phase goes towards building an understanding of the scope of the work, and towards defining the design question. Discovery occurs through both literature-based and user-centered research.

Definition involves more experiential work; its tools are creative workshops and design sprints, both of which distill complex ideas into concrete design objects. The main output of the discovery and definition phases of the double diamond methodology is the design problem that the designer is actually trying to solve.

29 Department Philosophy, Positioning, and Methodology

undesired state of otherness, or an afterthought.

Prominent model, athlete, and amputee Aimee Mullins noted from the TED stage that because of developments in prosthetics aesthetics, “people that society once considered to be disabled can now become the architects of their own identities and continue to change their identities by designing their bodies from a place of empowerment�.18

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The second phase of this methodology is defined by development and delivery. Once the design problem is identified, the previous design work completed in the definition stage is reviewed and redesigned within the context of the problem. As the designer iterates on the work and makes improvements to it, the design process moves into the delivery stage. Physical prototypes are refined with the use of finished materials that will be used to create the actual product. Digital wireframes are made into full-fledged renders with the same resolution as actual websites and applications. Though user feedback is collected throughout the entire design process, it takes on a renewed significance in the delivery stage because of the level of polish and fidelity in the prototypes, and helps the designer understand how to further develop the product.

As I began the thesis in May 2015, I had a specific area of inquiry: design for spinal cord injury. I spent the summer reading books and articles; watching TED talks and building up my exposure to anything remotely related to spinal cord injury. In the fall, I began to interview subject matter experts, from academics to wheelchair users, in an attempt to build an understanding of the science around spinal cord injury treatment and the lived experience of wheelchair use. From these interviews, I synthesized information that pointed to design opportunities and developed the scope of my thesis.

While I was conducting research, I was also designing; in Unbound, the discovery and definition phases were completed concurrently. The design work — a type of experiential research itself — included a co-designing workshop and several design sprints in different design media. In the co-designing workshop, I met with three wheelchair users and took them through a speculative design process, with the goal of taking their lived experience and discovering insights through the act of design. In a series of design sprints, I took these insights and the insights culled from the more formal interviews and distilled them into services, apps, products, campaigns, businesses, and social interventions. Through idea generation, I was defining the central problem of my thesis, narrowing its focus to a singular idea.

By constantly iterating and building on my work, I was able to ultimately identify the design work that was most successful in empowering people with spinal cord injuries and narrow the focus of my thesis once more.

These designs were taken to the prototyping stage, where their resolution and fidelity were refined so that they were realistic in both execution and concept.

The main outcomes of my thesis include Journey, an app designed to pair recently injured individuals with one another; Silent, a restorative yoga session that seeks to establish a stronger mind-body connection within participants; Test Drive, a service/marketplace that allows people to buy and sell used medical equipment including wheelchairs; and CleanCath, an intermittent catheter sterilization device.

31 Department Philosophy, Positioning, and Methodology

Once I solidified the central problem of my thesis, that when a person sustains a spinal cord injury, their treatment is seen through a lens of restoration, not of empowerment, I developed my work further through iteration, analogous experiences, and group critiques.

This resulted in a second expansion of the scope of my thesis, a period in which I experimented with form and content within the specific design media that I felt best addressed my thesis problem.

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Discovery: Design Research

Spinal Cord Injury Overview My research for Unbound began with an overview on the biology of spinal cord injury and neural networks.

Neurons are a type of cell found in the human body whose specialized function is the transmission of synapses through the body, enabling the brain to control processes that allow normal life. The neural control of the human body is divided between the central nervous system, composed of the brain and the spinal cord, and the peripheral nervous system which branches out from the central nervous system to provide enervation to the limbs and organs. Vertebrae are segments of bone that protect and enclose the spinal cord.

The spinal cord is separated into sections based on the anatomy of the human skeleton. Cervical vertebrae support the skull and allow for head movement. The cervical nerves innervate and control the region of the body beginning with the head and ending with the hands.

Thoracic vertebrae attach to the ribs; thoracic nerves provide control of the trunk above the waist and the abdominal muscles. Lumbar vertebrae span the region between the rib cage and the pelvis; Lumbar nerves control the legs through the knee and up to the toes.

The sacrum is located behind the pelvis and consists of five fused sacral vertebrae. The sacral nerves control urinary and rectal excretion, and innervate parts of the foot.20 Spinal cord injuries either completely or partially damage the spinal cord; the damaged spinal cord can no longer send electrical impulses to the neural network past the point of injury. If someone sustains a cervical spinal cord injury, she will likely lose function controlled by most of the nerves below the level of

33 Discovery: Design Research

This section of the text includes the most relevant material that I culled from my research on design for spinal cord injury. The resources drawn upon for the completion of this section include books, TED talks, and interviews with users that helped establish the factual and conceptual underpinnings of Unbound. The section concludes with key insights that shaped the design work to come.

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A diagram from Merck Manual that illustrates the loss of function associated with each spinal cord region.24

Typically, the spinal cord isn’t directly injured as a result of trauma. Instead, the protective vertebrae usually sustain most of the damage, and the spinal cord is injured when pieces of vertebrae cut through or press upon it. Tumors, autoimmune attacks, and neural cell apoptosis can also cause spinal cord injuries. Only in extreme cases is the spinal cord completely severed.22 After a spinal cord injury is sustained, the spinal cord goes into shock, which is marked by a period of depressed neuronal activity. The cord below the injury, which retains most of its neurons, becomes hyperactive. Spastic paralysis of the muscles, which causes the limbs to move unpredictably and uncontrollably, can be observed for as long as 6 months after the initial injury.23 When someone sustains a spinal cord injury, her injury is assessed using the ASIA Impairment Scale, on the basis of sensory [feeling] and motor [movement] function. This scale is letter-based, with the most severe injury rated ASIA-A and normal function rated ASIA-E. When someone’s injury is rated ASIA-A, it means that the break in her spinal cord is complete, and no sensory or motor function exists below the level of injury. ASIA-B through ASIA-D represent different levels of sensory and motor function below the level of injury. Typically, a patient’s condition has more potential for improvement if she is diagnosed lower down on the ASIA Scale.25 Humans naturally have the ability to regrow parts of the peripheral nervous system across gaps as wide as one centimeter. This ability is much more limited in the central nervous system, which can only regrow about one millimeter of its length. After spinal shock has subsided,

35 Discovery: Design Research

injury. The amount of control that remains after an injury is sustained determines whether or not someone is a paraplegic or a quadriplegic/tetraplegic. A paraplegic can experience paralysis from the chest down and retains use of her arms, whereas tetraplegics either have limited or no control of their hands and arms. Some tetraplegics require the assistance of ventilators to breathe, depending on the level of their injury. The anatomical point that distinguishes the two is the C8/T1 vertebrae.

The nerves housed in the C8 vertebrae control hand function; the nerves in the T1 vertebrae begin to control the chest and trunk of the body.21

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scar tissue generally fills the gap between pieces of the spinal cord. Ependymal cells, which form part of the neural tissue in the spinal cord and are responsible for the regenerative potential in the peripheral nervous system, are blocked from potentially regenerating the spinal cord by scar tissue. Though spinal regeneration, through biological means or technological ones, is an active area of research in the treatment of SCI/D, improvements in motor or sensory ability following a spinal cord injury are therefore most likely not attributable to spinal cord regrowth.26 Improvements in sensory and motor function do occur over the course of the months following a spinal cord injury. The human spinal cord exhibits activitydependent plasticity, even after injury, that responds to physical therapy, though the extent to which it can improve depends on the severity of the original injury.27 Many people who sustain spinal cord injuries must rely on mobility aids and other medical equipment in order to navigate their injury and return to a sense of normalcy even after physical therapy. This continued reliance carries with it its own health implications.

Secondary Health Risks28,29 Severe secondary health complications that result from SCI/D include autonomic dysreflexia, urinary and fecal incontinence, sexual dysfunction, and pressure sores.

Autonomic dysreflexia occurs when an injury, pain, or stimulus [such as the urge to urinate or defecate, pressures sores, or cuts] exists below the level of injury. The irritated area or body part tries to send signals to the brain, but they are blocked by the spinal cord injury. A reflex occurs through the autonomic nervous system, which operates without the input of the brain, causing rapid changes in blood pressure and heart rate. If left untreated, autonomic dysreflexia can have serious health implications that could even cause death.

Most people with spinal cord injuries experience urinary and fecal incontinence, due to how low the nerves that control urination and defecation attach to the spinal cord. Lack of sensation means that individuals with SCI/D can’t tell when their bladder is full. The bladder

For fecal incontinence, people with SCI/D may similarly experience sporadic or non-existent bowel movement. The consumption or probiotics and the establishment of a bowel program help people with SCI/D manage their fecal incontinence. The bowel program usually begins with the insertion of a suppository into the anus. A short time later, the anal sphincter is digitally stimulated with either a finger or a medical device in order to stimulate peristaltic movement in the bowel that will help the person defecate. Some bowel programs may take hours to complete. People with SCI/D learn to regulate their consumption of food and water in order to make their excretory needs more predictable.

Women with spinal cord injuries can still conceive and give birth to children, though the pregnancy must be monitored more closely for complications. Their ability to reach orgasm through intercourse, however, may be compromised depending on the specific individual involved. Level of injury is the major determinant of male sexual function in the context of spinal cord injuries. With spinal cord injuries, there is a risk of inability to maintain an erection or ejaculate, and fertility decreases because of loss of motility in the sperm. A variety of treatments exist to address these issues, though their very presence may have a profound psychological impact on the injured person.

Because people with spinal cord injuries have limited mobility, they are at risk for pressure sores. Pressure sores develop when skin tissue breaks down because continuous pressure on the skin blocks blood flow, causing the skin to die. People with SCI/D must constantly evaluate the state of their skin, as pressure sores can develop into serious and even life-threatening conditions as they progress from the skin down into the bone. Treatment for pressure sores involves the use of skin grafts to replace the dying skin. Patients

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may release suddenly, or not at all. In order to manage their incontinence, people with SCI/D use catheters, which come in two categories: Foley catheters, which remain inside the urethra for an extended period of time and constantly drain out to a collection bag, and intermittent catheters, which are disposable and intended for single use.

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are bed ridden for weeks or months at a time. In order to properly maintain the skin before a pressure sore develops, people with SCI/D ought to lift themselves off of the seat of the wheelchair if possible, ask a caretaker to do it, or somehow shift their weight off of their seat. At night, people with spinal cord injuries and their caretakers must wake up regularly to shift their weight and avoid the formation of sores.

In addition to these problems, people with SCI/D are more likely to develop pneumonia, which is a leading cause of death among the spinal cord injured community.

This is due to the fact that spinal cord injuries, depending on the level of injury, make it difficult or impossible to cough or expel liquid from the lungs. Heart disease, osteoporosis, and muscle atrophy are other conditions that result from spinal cord injury and life in a wheelchair.

Hospital Stays30,31 After sustaining a spinal cord injury, an individual can expect to be in the hospital for the next three to six months. During this time, medical staff take steps to stabilize the patient’s condition. The patient will be completely bed-ridden at first, gradually increasing the time she spends upright in a chair. As the patient’s condition improves she begins to go through skills training with a physical and occupational therapist in order to prepare for life outside of the hospital. They are connected to a variety of experts in the course of their recovery, including doctors, therapists, and SCI/D veterans who have lived with their injuries for years.

In addition, patients may be able to connect to one another informally in hospital rehabilitation centers, helping their emotional recovery by reminding them that they are not without peers and reducing their general sense of isolation. When the patient gets ready to leave the hospital, her occupational therapist orders them a custom-fitted wheelchair. The wheelchair usually arrives a few months after the patient leaves the hospital; in the interim, she uses a loaner wheelchair from the hospital.

Rehabilitative Technology

Some of this technology blurs the line between restorative equipment and bio-modification. While advances like exoskeletons and smart prosthetics undeniably improve the lives of people with SCI/D and amputees, these advances point to a troubling future.

The pressure to perform better and faster in the context of sport and consumer technology may lead to an arms race that further robs people with disabilities of their humanity. As augmentation comes to define the new normal and incorporates even more advanced technologies, society’s standard of what “human” means is becoming fundamentally altered. This rampant progress carries with it a risk of leading to a future world that further disenfranchises both the disabled as well as the impoverished who can not afford expensive bio-modifications.34 Life in a Wheelchair Following a spinal cord injury, individuals must adjust to life in a wheelchair. There are many techniques that wheelchairs users to get around in a world that wasn’t necessarily built with accessibility in mind.

Discovery: Design Research

There are several exciting developments in rehabilitative technology for people with spinal cord injuries. Exoskeletons are currently in development at several different bioengineering labs across the world. Currently bulky and energy-intensive, these exoskeletons are beginning to see use as rehabilitative devices that counteract SCI/D-related osteoporosis and muscle atrophy. Low-tech, stationary standing frames accomplish the same therapeutic outcome by allowing people with spinal cord injuries to stand with assistance. Functional electrical stimulation [FES] is a technology with rehabilitation application as well. FES is a way that therapists can allow people with spinal cord injuries to exercise their legs despite their lack of direct muscular control past their point of injury.

FES externally stimulates muscles through the skin; when the impulses are applied in sequence, for example, patients can pedal bikes, walk, or stand. FES technology has begun to be integrated into novel applications such as exoskeletons and even forms of basic mind control.32,33

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In addition to the physical reality of navigation in a wheelchair, wheelchair users must contend with a variety of psychological issues that result from their loss of mobility and inability to access parts of the built environment that were accessible before their injury.

Many wheelchair users find meaning through sports.

Wheelchair basketball, adaptive IronMan competitions, and yoga are just a few examples of activities that help wheelchair users regain a sense of pride and agency in the aftermath of a traumatic accident. In this sense, the wheelchair becomes a key object in the recovery of agency for the spinal cord injured individual.35,36,37

Despite their different functions and intended use cases, these wheelchairs share a remarkably similar aesthetic.38,39,40,41,42,43 Opposite, A similarly functionally diverse group of bicycles is composed of bicycles with radically different aesthetics.44,45,46,47,48,49,50,51,52,53,54

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Despite their primacy in the lives and identities of their users, who come from different backgrounds and have different needs and interests, wheelchairs are all created with the same general aesthetic. This uniformity is made all the more stark by examining the range in aesthetic expression available in a related product category: the bicycle. Examining the full spectrum of bicycles available on the market reveals full range of identities available for purchase, even within the product line of a single manufacturer. Wheelchairs are not considered in their aesthetic design because they are designed as medical equipment whose function is of paramount importance. This approach ignores the symbolic importance of the wheelchair to people with SCI/D and to people who rely on wheelchairs for mobility. The point of access to the broader world, the very means through which a person sees and experiences the world, the object that a person is reliant on every day of their life, ought to be more expressive of that person’s individuality than wheelchairs currently are.55 Interviews There is no other part of Unbound that so clearly demonstrates the evolution in the conceptual underpinnings of the thesis as the user interviews do.

In searching for people to interview, I focused on people with spinal cord injuries, wheelchair users, doctors, nurses, occupational therapists — basically anyone who had a hand in recovery from spinal cord injury. I initially wanted to design a missing link product — an exoskeleton concept that no one had thought of or the wheelchair that users pedal their wheelchairs by using existing FES technology. I spoke to experts about were cures; my interviews focused on how to get better, how treatment proceeded, whether a cure was even possible.

As my thesis progressed, this approach changed, from investigating potential cures and ways to get someone with an SCI/D walking again, to focusing on the more immediate needs of someone with SCI/D, on making the day-to-day more bearable. My approach to the thesis mirrored the views towards rehabilitation and adaptation that someone with SCI/D might develop over time.

The design process began in earnest after the completion of 40 subject matter interviews; from those interviews

1. The two worst wheelchairs that a wheelchair user will ever have are the loaner chair that she leaves the hospital with, and the first custom wheelchair that she orders with the help of her occupational therapist.

2. People who are always sitting are less participatory in society.

3. For some people with SCI/D, the worst notion of being in the wheelchair is actually the notion of elimination, of urination and defecation.

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

5. Inaccessibility remains a very big problem for people in wheelchairs, even 25 years after the passage of the ADA.

6. While medicine denies that connectivity can exist across a spinal cord break, practices like yoga provide an alternate understanding of the connection between the mind and body, especially for someone with SCI/D.

7. 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.

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and my earlier research, I was able to cull 7 major insights that would shape the course of the design work to follow:

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This last insight was the most pertinent to my approach to the design work in my thesis, as opposed to the design work itself. As will be apparent in the next section, any of my early designs feature the use of FES in a novel context, as if it could solve all of the problems posed by SCI/D. Eventually, as I completed phases of the double diamond methodology, I would come to realize that adaptation was more important and more valuable for my end users than FES could be.

The name and occupations of each person interviewed for Unbound can be found in Appendix A, alongside insights and quotes from each interview.

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Definition: Design Sprints

Design Dump: 100 Sketches After an intensive discovery process, it was a relief to begin ideating. This exercise of producing 100 different design ideas was a preliminary attempt to better hone the objective of my thesis. Developing a broad range of designs allowed me to synthesize the research that I had completed to date. This exercise virtually guaranteed a breadth of design work that necessitated a move past the obvious into more experimental, non-intuitive territories by virtue of the sheer number of designs that were produced.

My early designs covered everything from wheelchairs to exoskeletons to furniture, with an admitted bias towards engineering-heavy products. At this stage in my thesis, and in my design life, I was still skeptical of the power and importance of aesthetics. With the user groups that I wanted to help and empower, I thought that functionality reigned supreme. I believed that what was most important was creating products that had a tangible impact on my users’ lives through what the products did and not through what the products were. It wouldn’t be until much later that I would realize that this mode of thinking fell into the very design fallacy that existing products for SCI/D fall into.

The 100 design ideas that I developed for the design dump follow this page.

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This section describes the process of problem definition, in which insights from the user-led research [discovery] phase of the thesis are applied in quick bursts of design work. Completed quickly, collaboratively, and iteratively, the designs that resulted were valuable for several reasons. The act of designing after an extended period of research allowed for the synthesis of vast amounts of raw data. These ideas would become the basis of the more finalized design work that was completed after the central problem of the thesis was identified, and helped significantly to define that central problem in the first place.

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After the 100 sketches, I refined three of my most promising ideas into more finished renderings. I imagined the three products that I chose to refine — a bladder implant, an FES-powered wheelchair, and an FESpowered soft exoskeleton — as corporate partnerships with Interstim, a pacemaker manufacturer, Restorative Technologies, a FES device manufacturer, and Under Armour, a sporting apparel retailer, respectively.

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Co-Designing Workshops Up to this point in the development of Unbound, I had benefitted from the insight imported to me by my interviewees, but I hadn’t actively involved them in the definition stage of my thesis. In order to do so, I ran futuring co-design workshops with three wheelchair users in New York City. The goal behind the co-designing workshops was to allow participants who had experience navigating the city in wheelchairs to distill their experience into the design of physical objects.

Workshop Development When I originally set out to hold my co-design workshop, I intended to do so with a spinal cord injury support group at Mt. Sinai hospital in New York. I had gotten approval from the doctor that ran the group, and began to do some preparatory work for the workshop, sending emails to the doctor for feedback intermittently. My initial ideas for the workshop presented participants with two future scenarios, one utopian and one dystopian, which I outlined using the STEEP methodology. The scenarios took place 25 years from the present in honor of the ADA’s 25th anniversary. In the utopian scenario the culture of disability had completely changed and became imbued with compassion. In the dystopian scenario, economic crises and environmental disasters rendered the environment completely inhospitable for wheelchair users, forcing the disability movement to militarize and take matters into its own hands.

I had planned for my participants to pick a STEEP lens to respond to. They would then create small models and stories that I could capture and share on my thesis blog.

The doctor, however, told me that the workshop tends to attract a mix of in-patient and out-patient individuals, some who are still traumatized by their accident. I tried to pare down the prompt as much as possible and abandoned the intricate future scenarios and much of the seeding for the workshop.

If the patient mix was primarily in-patient, I’d seed ideas by focusing on the current treatment that they were receiving. Patients would perform a brain drain

In an abrupt about face, the doctor that I was speaking to decided that it was inappropriate to have participants making anything in the workshop. One of the reasons that the doctor gave me for canceling the workshop was that the patients just weren’t ready or in a mental place where a co-design workshop would be appropriate.

Instead, the doctor recommended that I should ask them directly for ideas about adaptive equipment and activities that they wished that they could do but couldn’t any longer. I explained that I really wanted to have a co-creative element to the workshop, where individuals were making things themselves, instead of merely generating ideas and dictating them to me.

It is incredibly difficult to “just come up” with product ideas, the way that the doctor suggested the patients would in a workshop setting. Additionally, identifying problems and systematically trying to solve them, even in the context of a 1 hour workshop, is incredibly empowering. Instead of having the patients tell me, the designer, what they wanted to be made and how they wanted their lives to be changed, I was asking them to make the objects and transform their own lives themselves. In doing so, the patients could establish their own sense of agency, of taking control of situations that have spiraled out of control. Without the doctor’s understanding or approval, the initial workshop that I planned for at Mt.Sinai ultimately never happened.

Workshop Execution Since the workshop at Mt. Sinai fell through, I held three separate workshops for three participants, all of whom were wheelchair users. This gave me the ability

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to distill all of their normally unspoken assumptions and fears, express their feelings towards their injury and treatment, and use that as a basis for designing speculative objects. After the brain drain and making processes, patients were to share these ideas and products by saying “XYZ frustrates me currently, so I designed ABC.” If the patient mix was out-patient, I would have used the dystopian STEEP scenario to seed their design ideas, as the doctor in charge told me not to overcomplicate things by adding too much variability.

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to rapidly iterate the workshop and alter aspects of it that didn’t work for subsequent runs of the workshop. The workshops were initially consistent in their approach to the workshop that I had planned for patients at Mt. Sinai.

The first product that came out of the co-design workshop was an exoskeleton. In this future world, exoskeletons replace wheelchairs. They’re slim, aerodynamic and made of skin-like material that is waterproof. The exoskeleton is connected to the central nervous system for information. The cushion is honeycombed to alleviate pressure sores when seated. The light turns on when the battery is about to run out. In later conversations with the designer of the exoskeleton, I learned that he would have designed a different object; in retrospect, he felt that exoskeletons would turn him “into a robot”, which would complicate his everyday interactions and experiences, and dehumanize his condition. Being in a wheelchair was preferential to life in an exoskeleton.

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After completing the first workshop, I realized that using future scenarios to seed the design work in the workshops would likely result in all of my attendees designing exoskeletons, so I transitioned the initial scenarios to the present day. In doing so, I hoped that the prompts themselves, without the future component, would be generative enough to seed ideas for my participants’ designs. I added a press release madlib that required participants to fill in the blanks of a standard press release in order to more concretely seed product ideas. Participants had to imagine a product name and a company to create and sell the product.

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Paris, France

Tired of the inaccessibility of one of the world’s most prominent cities, Parisian youth, able and disabled alike, have taken to the streets, determined to make change happen brick by brick.

Definition: Design Sprints

In the midst of the ADA’s 25th anniversary a dream is born: the built environment has been changed to be more accessible, but how could it and the society that it housed become more equal?

_________________________ Announces the Launch of _________________________ Company Name

Product Name

FOR IMMEDIATE RELEASE _________________________ – _________________________ is excited to announce the launch City, State

Company Name

of _________________________, a ______________________________________________ that will Product Name

Product Type

__________________________________________________________________________ Product Function

__________________________________________________________________________. The Product Function

official launch date for _________________________ is _________________________.

Product Name

Date

_________________________ believes ________________________ will ________________________________ Company Name

Product Name

______________________________________________________________________________________________________ ______________________________________________________________________________________________________ ______________________________________________________________________________________________________ ______________________________________________________________________________________________________ ________________________________________________________.

Reasons why the product is disruptive

_________________________, upon hearing news of the release stated: Luminary

______________________________________________________________________________________________________ ______________________________________________________________________________________________________ ________________________________________________________.

Quote

###

Leaving the Chair Behind A Thesis Project by Souvik Paul

Leaving the Chair Behi A Thesis Project by Souvik Pa

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A workshop participant beginning to brainstorm after choosing a scenario to respond to.

Opposite, a workshop participant in the process of filling out a product press release madlib.

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A workshop participant creating his final product.

Opposite, a press release madlib for the Zero Step.

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The Zero-Step adapatable ramp.

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The second product that resulted from the workshop was called the Zero Step. The Zero Step is an adaptable ramp system that can fit any entrance staircase to create a wheelchair accessible entrance. It arose out of a discussion about inaccessibility in New York, and how providing accessible entrances can be a financial burden for store owners. The product Zero Step was designed to revolutionize accessibility.

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The final product that was developed in the workshops was called Store N’ Fly. Store N’ Fly is a reusable packing solution for wheelchairs that will allow persons with disabilities the ability to travel with their mobility equipment without worrying that it might be damaged during flight.

Opposite, a press release madlib for the Store N’ Fly.

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The Store N’ Fly.

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Design Sprints The final stage of the definition phase of Unbound consisted of a series of week-long design sprints.

These sprints developed the insights gathered from the discovery phase into different designed objects — services, apps, social interventions, products, and campaigns. Designing rapidly and iteratively in this manner and receiving critiques on the successes of each design ultimately helped define the central problem statement that Unbound sought to resolve: that when a person sustains a spinal cord injury, their treatment is seen through a lens of restoration, not of empowerment.

Sprint I: Service Design The first sprint to begin this phase of rapid ideation was the service design sprint. Uber, Lyft, Seamless, Amazon are all examples of services. Their ubiquity is a reflection and a direct result of their everyday utility.

These services rethink what it means to ride in a cab, or order delivery or shop for cleaning supplies.

My approach to this task of designing for service was to take insights that I gleaned from previous interviews and workshops and see if I could transform those into viable services.

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ADApt Many of my interviewees told me about how often the built environment excludes people in wheelchairs. Chris P, who was both an interviewee and a participant in a co-design workshop, designed a portable ramp system that would render the many inaccessible restaurants and businesses of New York City finally accessible.

After researching modern day accessibility in New York City, I found out how small businesses have been saddled with more ADA-related lawsuits as a result of not complying with the letter of the ADA. As a result of the suits, businesses had to complete renovations on top of substantial legal fees, which could soar over $10,000 dollars.56 The article also mentioned that small business owners are oftentimes simply unaware that their businesses are inaccessible and find this out for the first time upon receipt of a lawsuit.

This series of images features slides from a presentation made about the ADApt concept.

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ADApt was designed in response to this status quo. ADApt is a service that would make the world more accessible for wheelchair users by helping small businesses comply to the spirit, if not the letter, of the Americans with Disability Act. Businesses would be flagged by wheelchair users and third party resources such as Yelp. ADApt would send its team of local consultants, which includes wheelchair users, to meet with the business owner, who could avoid expensive lawsuits by preemptively complying with the ADA. With the business owner’s needs in mind, the ADApt team would create unique solutions for making the business accessible for wheelchair users.

ADApt would charge business owners a reasonable consultation fee that is slightly below the market rate for architectural consultations. This loss would be offset by taking a commission on any renovations completed as a result of the consultation. ADApt would connect the business with trusted contractors who will

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build lasting and reliable solutions for accessibility.

Its experience in architecture and accessibility from the point of view of actual wheelchair users would help ADApt launch a movement to fully implement the ADA within the built environment.

ADApt would get its first customers by using existing resources, such as Yelp, to understand which businesses are currently inaccessible for wheelchair users.

Eventually, the service would rely on feedback culled directly from wheelchair users as it builds out a user network and gain press and media attention. Its vision is to rebuild the built environment to be more inclusive to people who use wheelchairs.

For out the the

ADApt’s branding, I used capitalization to call ADA in the word as that’s very much the focus of service — getting businesses to be compliant with spirit of the ADA. I chose Gotham as the typeface

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because it’s a solid, strong typeface that also nods to New York: Every designer has admired the no-nonsense lettering of the American vernacular, those letters of paint, plaster, neon, glass, and steel that figure so prominently in the urban landscape. From these humble beginnings comes Gotham, a hard-working typeface for the ages.

Gotham celebrates the attractive and unassuming lettering of the city. New York is teeming with such letters, handmade sans serifs that share a common underlying structure, an engineer’s idea of “basic lettering” that transcends both the characteristics of their materials and the mannerisms of their makers.57

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The typeface’s connection to New York City is appropriate, as the idea for ADApt sprang out of a discussion with one of my interviewees of how New York City is actually quite inaccessible despite being a modern city. The font is italicized because I wanted to imply a sense of movement. The ramp that cuts through the whole logo is a reference to the purpose of the service.

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Training Wheels The second service design that I developed was called Training Wheels. The name itself was problematic — while it was an apt description of the challenges that face someone who is transitioning to life in a wheelchair and what the service does, it could be considered demeaning and infantilizing.

Name aside, the service was designed in response to an insight from one of the interviews: that the two worst wheelchairs that wheelchair users ever own or use are the loaner chair that they leave the hospital with, and the first custom wheelchair that they buy.

The loaner chair is the chair that the wheelchair user leaves the hospital with after a traumatic injury. The loaner chair is generic — the hospital doesn’t have that many loaner chairs on hand, so what the patient sees is This series of images features slides from a presentation made about the Training Wheels concept.

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what the patient gets. The new wheelchair user can’t develop expertise in wheelchair handling in the loaner chair because it is a poorly fitted wheelchair. Because of this, most recently injured SCI/D patients will order a custom wheelchair with the help of their occupational therapist very soon after leaving the hospital, in order to leave the loaner chair as soon as possible.

Because the first wheelchair is ordered for the wheelchair user by the occupational therapist without really knowing what the user is capable of or what her idiosyncratic use of the wheelchair will be, a lot of guesswork is involved in placing the order for a wheelchair. This can result in a wheelchair that fits well but isn’t suited for the user’s lifestyle — in the case of the interviewee who spawned this insight, the center of balance of her chair was too far back, so when she did wheelies in order to get up on curbs or manage her descent down a steep ramp, she sometimes fell backwards.

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This is particularly problematic because most insurance policies only cover one wheelchair purchase every five years. That’s five years, or a lot of money out of pocket, before someone who is reliant on a wheelchair for mobility can actually feel comfortable and at ease in their wheelchair. In this context, that much time can be an eternity.

Training Wheels was designed to dramatically reduce the period of time that a new wheelchair users feels uncomfortable in her wheelchair. Training Wheels is a service that eases the transition to a wheelchair by establishing a sharing market for used wheelchairs. Wheelchair users are usually confined to an uncomfortable and heavy loaner chair for a few months after they leave the hospital. Training Wheels replaces the loaner chair with the used chair of someone with a similar body and injury type. This allows users to train wheelchair skills on a wheelchair more similar to the

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one that they will be prescribed by the occupational therapist, and gives them a better idea of what their idiosyncratic needs in a wheelchair are.

Training Wheels would buy used wheelchairs from current wheelchair users, and then lease them to new wheelchair users who are in the process of ordering their own wheelchair. It would charge them on a monthly basis, and would accept cash and insurance as forms of payment. Training Wheels would also supply users with replacement parts for their wheelchair by drawing on its stockpile of parts, bypassing the slow and onerous process of applying for parts through traditional channels such as insurance.

Training Wheels’ experience in speaking to wheelchair users about their experiences getting their first wheelchair and its positioning as outsiders to

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the industry would help it launch an innovative and potentially disruptive new method of ordering wheelchairs for new users.

It would get its first customers by partnering with occupational therapists and care providers to in Berkeley, CA, where the modern accessibility movement started. The Training Wheels vision is to build a market in used wheelchairs and wheelchair parts that makes the process of getting a new wheelchair and repairing broken parts on a wheelchair more human.

For Training Wheels’ branding, I wanted to use the font Avenir for the logo because its conceptual underpinnings were consistent with the mission of Training Wheels.

Both the font and the service embody a feeling of looking forward to the future:

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The word avenir is French for “future”. The font takes inspiration from the early geometric sansserif typefaces Erbar (1922), designed by Jakob Erbar, and Futura (1927), designed by Paul Renner.

Frutiger intended Avenir to be a more organic, humanist interpretation of these highly geometric types.58 Though most san serifs are very modern and minimalistic feeling, Avenir feels more human — appropriate for a service whose tagline is “humanizing mobility”.

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Sprint II: App Design After service design, the next design framework that I designed through was apps. In this framework, I storyboarded and wire-framed two apps that addressed different insights that I had gathered from users in the discovery phase of the thesis.

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Training Wheels I decided to adapt Training Wheels into an app. When developing the service, I had imagined it as an app.

The usability of the service from both the occupational therapist and wheelchair user perspectives would increase immensely if both users could access it while on the go. Occupational therapists would be able to bring the same mobile device around with them when evaluating and sizing patients. Wheelchair users would be able to order replacement parts for their chairs as soon as something broke with an app. I began by storyboarding the app.

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Following the storyboards, I wireframed the app using a tool called Balsamiq. I designed the screens for the occupational therapist on an iPad-sized screen, to aid the therapist in sizing the patient. The ordering pages and chair profile pages were designed on an iPhone for the patient’s use.

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I refined these wireframes into actual renderings. I changed the fitting screen — instead of the occupational therapist entering the information into the app manually, the app used the photo function of the phone or tablet to automatically generate metrics for sizing that could be manually adjusted. Above and on the following spread, the wireframes and renderings are displayed side-by-side.

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Journey Up until this point, I’d been focused on the very practical aspects of design for spinal cord injury. My services and products all addressed the physical aspects of paralysis and wheelchair use, without delving into the psychological aspects. My thesis interviews and reading suggested that I couldn’t begin to design for my users without addressing their psychological needs as well. A lot of those needs originated in the physical condition that my users had, but that didn’t mean that addressing one necessarily addresses both. Recognizing this, I designed my second app to really try to get to a deeper and more profound place than any of my previous designs.

In retrospect, this decision was key in eventually setting the direction of Unbound.

I reflected on my personal experiences in the hospital after my friend got injured and what her recovery was like. I had learned from Gary Karp’s book Life on Wheels about how a person’s perception of self can be dramatically altered in the aftermath of an injury — how the recovery process is about physically adjusting to altered abilities and mentally arriving at an understanding that despite the injury, you are the same person, if not stronger and more resilient.59 People link their independence and personhood to mobility without realizing it, and in the aftermath of a traumatic injury, that independence and personhood can feel very threatened. A nurse told me that nights at hospitals are particularly hard on patients — things quiet down and aren’t as active and the patient has a lot of time on his or her hands to just think. My second app was designed to address that moment of vulnerability.

I originally wanted to develop a product-app pairing to create a proxy for someone’s mobility and personhood.

This hypothetical device would almost become a part of the person that used it — it would give them the ability to leave the hospital by controlling the device and experiencing the world outside through a camera mounted on the device. The device would learn mobility with the patient — as he or she progressed through his or her therapy, the device would learn more skills. The device would have a programmed personality that would respond Wireframes and renderings of the Journey app are displayed over the next few pages.

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to the user’s MBTI type in order to effectively motivate them through their treatment. I realized that I wanted to create a small robot that the patient could bond with and take care of amidst the context of the patient being taken care of by everyone else.

To do this in a product-app pairing relied on a lot of magic ingredients. How do I ensure the emotional bond between patient and product? How do I make this interaction feel life-like? How do I make this profound and not artificial? I realized that everything that I wanted this imaginary product to do could be done by a real person.

I became interested in the sources of support for people when they are in the hospital recovering from a traumatic injury. While there are a lot of resources like doctors, physical therapists, occupational therapists, nurses, and even more experienced people with SCI/D who serve as inspiration for the newly injured patient,

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patients are not connected with other people with conditions like theirs who are themselves in the midst of recovery. In their memoirs about recovery and resilience in the face of spinal cord injury, Tricia Downing and Marvin Juette established just how important a peer network was to their recovery in their individual memoirs;60,61 Carina’s own experience in the hospital confirmed this. The closest thing to a formalized peer network in the context of the hospital was the SCI/D support group, but attendance tends to vary wildly, and the population that is supported is limited to people who live immediately proximate to the hospital.

Doctors and therapists and nurses also told me that no two injuries were ever the same, so the odds of having two people with similar recovery prognoses and therapeutic outcomes in one hospital seemed unlikely at best. I designed Journey to help connect two recently injured SCI/D patients connect with one another regardless of geographical location.

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With Journey, two people with similar temperaments and injuries could help motivate each other on their path towards recovery and adaptation. Users of the app, only available through prescription as a therapeutic tool in the recovery process, would be given an access key and on-boarded by their occupational therapist, and would be paired with someone else with a similar injury and personality after completing a Myers Briggs personality [MBTI] test.

Users of the app would be able to chat or call their recovery partners easily; they could also post their own training videos and tips and tricks that they learned throughout the day. This kind of information could feed upwards to a broader social network of wheelchair users and people recovering from spinal cord injury. Users could also compare their progress with one another in an attempt to gamify the therapy experience [though this function would be dropped in subsequent iterations of the app]. In order to be able to communicate nonverbally with one another, users could ping each other.

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The ping was conceived of as a musical note, specifically to be used during those tough moments at night in the hospital room when the patient is isolated and vulnerable. The ping is meant to remind the patient that he or she isn’t alone, and that there is someone out there who is facing the same struggle. If the patient chooses the ping back, his or her ping will have a different tone so that the two pings would combine and begin to form a musical scale.

I made the app’s design very monochromatic and gentle, filled with blurs and faded gradients. This was intentional because I wanted the focus of the app to be the other person, not necessarily the app itself.

This initial approach was overdone; the app is so monochromatic and minimalistic as to ironically draw attention to itself.

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Sprint III: Social Intervention Design After service design, the next design framework that I designed through was apps. In this framework, I storyboarded and wire-framed two apps that addressed different insights that I had gathered from users in the discovery phase of the thesis.

After designing apps, the next design media that I used in ideating designs for Unbound was social intervention design. This type of design utilizes a variety of methodological approaches in order to tackle complex social problems. The use of these various tools in pursuit of a singular goal — widespread social change — is what defines this design media.

In order to design social interventions, I identified a singular issue that I wanted see changed in the world. From there, using my interviews and accumulated knowledge as a base, I identified a key opportunity or insight that would help us create that change and used the 5 levers that Aaron Hurst identifies62 as potential leverage points for implementing social change on a massive scale to brainstorm 25 intervention ideas.

The 5 levers identified by Hurst are disruptive tech, involving the novel use of technologies and platforms; policy, the implementation of institutional rules at all scales by corporations and nations alike; data, which illuminates the intimate and un-intuitive inner workings of complex systems; bright spots, instances of dramatic change affected with minimal resources in an easily scalable way; and public perception, impacting how society at large views issues and the people that issues impact.

After developing the 25 ideas, I picked my favorite five for inclusion in my pitch deck, before picking a customer segment in the adoption curve to focus on. With a customer segment in the adoption curve in hand, the next step was to pick the one of our social interventions that was best suited to address that customer segment and develop it further by tailoring it to that group. Each segment on the adoption curve has wants and needs that are distinct from the others, providing opportunities for further conceptual refinement.

Central Issue

Even though society tends to differentiate primarily between abled people and disabled people, doing so minimizes and trivializes the sheer variety of experience of what is understood to be “disability.”

It also tends to consider disability and the disabled as this population of the “other” — i.e. there’s me, and then there are disabled people. This attitude towards disability is simply not accurate. The World Health Organization defines disability as an umbrella term, covering impairments, activity limitations and participation restrictions. Most people will experience a disability at some point in their lives for some duration of time.

Even though this is true, there is a stigma against disabled people - the act of discriminating against whom is called ableism. The issue came up in almost every interview that I conducted: employers discriminating against disabled people and refusing to hire them [only 17% of working age people with disabilities are employed, versus 64% of those without disabilities],63 and the media only portraying inspirational stories of people with disabilities, robbing them of their normalcy.

In Life on Wheels, Gary Karp talks at length about how the transition process to life in a wheelchair can be difficult for many people because they have to change their entire perception of what it means to be disabled.64

Definition: Design Sprints

In order to define the central issue for this design sprint, I looked at some of the work that I had done over the past few weeks, which already sought to implement changes in society through the lenses of apps or services, and realized that I wanted broaden the scope of my work this week to match the scope of the prompt.

Using myriad lenses in a concerted effort to tackle a single problem is a hallmark social interventions, and since I had already addressed issues like access to the built environment for wheelchair users, I wanted to tackle an issue that was bigger than anything I had dealt with before. Instead of focusing on wheelchair users, I dealt with disability as a whole.

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Having established this scope for the social intervention sprint, the issue that I tackled for this sprint was: “People with disabilities are systematically excluded from all aspects of society, including but not limited to the built environment, the workforce and the media,” with the following insight: “Perception fuels reality, and it is the perception of disability as dehumanizing that fuels this situation. By viewing people with disabilities as fully human, we can re-structure society to be more inclusive.”

Disruptive Technology “Disruptive technology” in the context of social intervention design means using an existing technology in novel ways. For my interventions using disruptive tech, I looked back at an insight given to me by one of my earliest interviews — that people in wheelchairs and with disabilities more broadly are always portrayed as climbing mountains and sources of inspiration.

I remember another interview when my interviewee told me that she just wanted to be normal, and that she didn’t want to be anyone’s inspiration. With that insight in mind, I decided to use two popular social media platforms, Instagram [IG] and Snapchat, for my disruptive tech social intervention.

For the former, I imagined an account similar to Humans of New York, an Instagram account that features stories of people that the account’s author encounters on a daily basis. He shares their stories with the IG community, commemorating the lives of the people in the pictures. They aren’t all sad or happy, they just are.

There’s a neutrality to the curation of the stories on the page that I think would be valuable if used to share stories about disability. There could be a diverse mix of stories and disabilities, from permanent disabilities to temporary ones. The page could help break the longstanding dichotomy of people with disabilities as either pitiable or heroic, and help transition to a perception of people with disabilities as normal.

The second intervention featured Snapchat — an app that allows users to share temporary videos and photos with one another. What makes this app powerful in the context of disability is the ability that the user has Opposite, possible usecases of Instagram and Snapchat to combat pervasive ableism.

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to draw over images very quickly. In an instant users can reimagine and re-contextualize spaces and, in doing so, draw attention to inaccessible spaces around the city. I discovered, both personally and anecdotally, that most people just aren’t aware of how inaccessible New York and its restaurants, bars, and subway stations are. If the Snapchat community saw its feeds fill up with images like the one shown, illuminating just how inaccessible a modern city like New York is, people wouldn’t be able to ignore the problem of accessibility.

Policy 15.5% of Medicaid recipients, over 9 million people, have some form of disability.65 Being reliant on Medicaid in order to pay for healthcare, forces a choice between having a job and having healthcare. Having a job has social repercussions in terms of both how the disabled person views themselves and how society views the disabled:

“People have adopted stigmatized notions of disabled people as unable to work. If I’m not working I might be more likely to selfidentify as disabled. If I have a job I may not say that.”66 15.3% of every dollar earned in the US goes to fund Medicaid and Social Security.67 Social Security is a government-sponsored program that also can be used to cover disability, but there’s a huge backlog in the court system that is needed to certify disability, making Social Security an unreliable source of healthcare funds.

Based on the WHO’s definition of disability, most people will probably directly encounter disability in some form over the course of their lives, whether personally, or through friends and family. Instead of relying on sections of Medicaid or Social Security to pay for healthcare,

Bright Spots Bright spots are easily replicable, scalable programs or interventions that offer simple solutions to complex problems.

A lot of spinal care hospitals don’t communicate with each other, and SCI/D support groups seem to exist in isolation from one another as well. The closest thing to a current nation-wide network of hospitals sharing best practices in the context of spinal cord injury or disability was the Reeve Foundation’s Neurorecovery Network, in which some of the best spinal care hospitals in the country participate. This network connects a few high profile hospitals and treatment centers, and functions as a fertile testing ground for the latest and greatest in spinal cord treatment and therapy.68 By targeting a broader array of behavioral best practices, general disability care could rapidly be improved across the nation by pooling knowledge. The research supports this idea as well — after a group of hospitals in Florida decided to share best practices, there was a 15% decrease in preventable patient returns for the same illness.69 This sharing of best practices wouldn’t necessarily need to be restricted by the type of disability that was treated by the hospital or support group in question.

The cross-fertilization of best practices could, in fact, be likelier to generate real and tangible breakthroughs in patient care. What could a spinal cord rehabilitation center learn from a hospital that exists mostly to treat patients who have had traumatic eye injury? Could best practices to handle multiple sclerosis be implemented in good effect for patients with cognitive disabilities?

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another publicly funded insurance policy could be carved out of the same 15.4% that funds Medicaid and Social Security — especially because a good portion of the former program already goes towards disability healthcare. This idea relies on a fundamental shift in how disability is viewed as a society as a problem that the majority of people will experience, as opposed to one that is limited to a select few.

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Data Data can be used to galvanize people into action by making them aware of social injustices through the use of objective statistics and information free from political or personal bias. When regards to the disabled community, there isn’t any shortage of data points that would shock most people: high incidences of obesity and heart disease in the spinal cord injured population, the astronomically high costs of medical treatment, suicide.

I chose to focus on employment because of its relevance to the social exclusion of people with disabilities.

There are a variety of reasons for this exclusion — capitalism, socialized perceptions of worth, etc. — but my primary motivation stemmed from the way that careers are how a lot people measure their own, and each other’s, worth. Perhaps that’s one of the reasons why disability tends to be treated with disdain, especially by employers. Several of my interviewees mentioned that they were discriminated against when it comes to hiring practices because employers tend to conflate physical or sensory disabilities with cognitive disabilities.

Statistics from the US Department of Labor, cited earlier, confirm this reality.

Some of this is due to the fact that some people with disabilities can’t work because they rely on Medicaid for insurance, but there is an undeniable bias against disability in the workplace. To galvanize action, then, is to visualize this data in a shocking way, by mapping these percentages against the height of the Empire State Building. If the 67% of abled people who were employed represented the full height of the Empire State Building at 102 floors, the 17% of the disabled population that was employed would only represent 27 floors.

Public Perception

For the first, I was inspired by the power of comedy to confront social norms, question them, and reframe them in a way that makes us realize how silly they were all along. Comedic talents such as Louis CK, Jerry Seinfeld, and Aziz Ansari use comedy to do this in their standup routines and television series. Less well-known disabled comics use their routines to confront head-on the realities of living with disability and society’s tendency to tiptoe around disability. One disabled comic, in an effort to promote her show, had a mole planted in a crowd at a public park. The mole would go around to people and invite them to “make fun of the crippled person” only to have them recoil in discomfort. The comic would then come up to them, reveal herself as a comic, and start telling jokes to promote her next show.

To harness this power of comedy, I designed a traveling comedy show that would go from state to state and from city to city, challenging people’s assumptions about what is politically correct and what stems from prejudice. The event’s name is both direct and ambiguous. A name like “Weirdos in Wheelchairs and Other Fucked Up People, Too” reframes the audience’s perception of both the disabled comics as well as the abled comics who perform that night. If all of the comedians address some aspect of disability and how deleterious the cultural practice of ableism is regardless of their own physical ability, they could inspire a sense of freedom amongst audience members to engage in this dialogue themselves.

My second design for public perception draws inspiration from juice cleanses and blind dining, and consists of a series of sensory cleanses. Days spent without hearing, or sight, or even walking could both increase a person’s awareness of their unfettered senses, and could help them appreciate that “missing sense” all the more — a sort of alternative mindfulness meditation that’s firmly situated in the physical senses. Such a rebranding could increase empathy for people with disabilities and would

Definition: Design Sprints

I explored two public perception concepts to address the problem of ableism.

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An event poster advertising Weirdos in Wheelchairs.

Opposite, a moodboard of images and concepts that inspired the concept of a sensory cleanse.

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make public support for accessibility skyrocket.

I developed this idea further, refining its aesthetic and branding by targeting the innovator segment of the adoption curve, simply because not many people out there focus on disability activism or disability rights.

Most people seem unaware of the stigmas that people with disabilities regularly face. Even though the ADA was passed 25 years ago, individual engagement with accessibility issues tends to be low if the person in question isn’t disabled, or doesn’t know someone who is.

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Sprint IV: Product Design After designing services, apps and social interventions, it was finally time to design products for Unbound.

For the product design sprint, I designed 36 products through sketch explorations of for-profit, non-profit, and crowd sourced ideas. I also created 3 sketch models of product ideas and refined two ideas further in another round of physical prototyping.

Though the development of these products did not continue past this sprint of the definition phase of Unbound, they were essential in helping me define the central problem of my thesis. Designing products also exposed my own biases as a designer because I had to imagine how my users would interact with the products that I designed. While this was true for all of the design work completed thus far, I found it easier to imagine how a user would interact with a physical product as opposed to a mobile app, yielding more insights in the process.

The next section showcases the initial 36 product sketches before focusing on the 3 sketch models that were created for the sprint.

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FES Wheelchair Attachment In order to build on existing FES technology, and change the emphasis of the technology from therapy to mobility, I designed a wheelchair that integrated this FES technique to let users propel themselves with their legs. This concept was built on an idea that I had in the very first product design dump of 100 sketches. After talking to several experts, I realized that no one would want this wheelchair for very long since it would be extremely heavy, decreasing their overall efficiency and ability to get around.

I iterated the design, making the FES portion of the wheelchair detachable and modular, allowing users to leave it at home when they want to. I roughly prototyped the overall shape and feel of the product, in order to get a sense for the relative proportions and dimensions of the FES attachment.

A sketch of the FES wheelchair attachment.

Opposite, a plywood sketch modelerg of the attachment, constructed to understand the ergonomics and rough dimensions of the attachment.

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I ultimately didn’t pursue this idea further. Looking at the actual interactions that users have with their wheelchairs and speaking to users indicated a fundamental flaw with this product — how much it would ultimately weigh. As a general rule, wheelchair users tend to want to minimize the weight that they carry around with them — a fact that I learned the value of myself when I used a wheelchair for a week later on in the thesis process. The weight of a battery as well as of the attachment itself would be far too much to justify its use.

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Me sitting in the FES wheelchair attachment sketch model.

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Rollable Ramp One of the first ideas that I wanted to prototype for the product design sprint was the rollable ramp. This idea is an iteration of a product that Chris P. designed in a futuring workshop earlier on in the thesis process.

Chris, a New York City resident, described the problems facing wheelchair users in New York City, especially around food and restaurants. A ton of restaurants in the city are still not ADA compliant, and many feature a single step up or down into their premises. The rollable ramp is meant to help users in those scenarios.

This product is a ramp that rolls up and is mounted on the back of the wheelchair. Existing portable ramps are expensive and are extremely bulky and heavy — not ideal for transport. The ramp also allows wheelchair users to take things into their own hands and alter the environment around them because bureaucracy and A sketch of the rollable ramp.

Opposite, proposed user engagement with the product; this would later be exemplary of the logical fallacy that decreased the utility of the Rollable Ramp.

Images of the various prototype ramps follow.

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regulation aren’t the quickest ways to get things done.

Despite the existence of the ADA, it’ll be a long time before everything everywhere is accessible, and taking action on an individual level to make places more accessible empowers for users. Instead of being at the mercy of their environment, users control accessibility themselves.

The mechanism that keeps the ramp sturdy when in use is tension in the material used to hold the individual planks of the ramp together and the physical dimension of the planks themselves. There isn’t really a need for bulky components that add unnecessary weight to the product. The denim and wood in the rough prototype were held together by staples as a proof of concept.

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The next iteration of the product featured square aluminum tubing and aircraft wire rope. The square tubing adds bulk to the product, and it’s hard to imagine a huge roll-up ramp on the back of wheelchairs everywhere. Ultimately this product would be made out of carbon fiber, making it extremely light, allowing for flexibility in terms of plank shape, but adding significant costs to its production.

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The Rollable Ramp was ultimately an interesting idea but its interaction with the user made no sense. In order to use the ramp, a user would have to reach behind him or her, grab the ramp, unfurl it, roll over it, and bend over, pick it up and roll it up again. With the amount of upper body strength and stability that this requires,the user would have enough strength to pop a wheelie in order to travel over obstructions. I decided not to pursue this object further, in the interest of focusing more squarely on the problem of incontinence and defecation for people with SCI/D.

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Bluetooth Incontinence Implant The next idea that I prototyped was also an idea that I had from the very beginning of this thesis. One of the hardest things for Carina to adjust to was the incontinence that she developed as a result of her injury, and that many people with spinal cord injuries develop. The area of neural control of the bladder is in the S2—S4 region of the spine, in the sacral vertebrae.

This is the part of the spinal cord that is attached to the hip bones, forming the pelvis. After a spinal cord injury, if the level of injury is above this point, bladder sensation is very limited. Users have to selfcatheterize regularly to empty their bladders if they have the requisite arm and hand function to do so, but not even regular catheterizing can prevent an accident if the injured person suffers from a spastic bladder.

Individuals without arm and hand function have to rely on an indwelling catheter that empties out into a bag that slowly fills with urine over the course of the day.

A sketch of the bladder implant.

Opposite, diagram of the same.

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Sacral Nerve Stimulators are a class of device that are implanted in the hip of patients who suffer from incontinence. The implant feeds a stimulating current to the nerves that control the external urethral sphincter which stabilizes the muscle and makes sure that it stays closed, until the user decides to void. This device is intended for use by people who still have some measure of control over their bladders.

Similar products incorporate magnetic switches that can be used to exercise bladder release remotely. By passing a magnet over the skin near the location of the implant, the bladder can be released. This is fairly useless for people with spinal cord injuries because of the need for frequent MRIs to evaluate how their physical condition is progressing. I designed the implant to use Bluetooth Low Energy [BTLE] to communicate with the user’s cellphone. The implant uses sensors to monitor the status of the bladder; when it is approaching full, it alerts the user’s phone via BTLE and allows them to remotely empty the bladder.

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For the first round of prototyping, I used a thin black stretch sensor in a circuit controlled by an Arduino that also output 5V via another wire in the circuit. When the stretch sensor was stretched past a certain threshold, the Arduino sent a message to my phone asking it if I wanted to void my “bladder�. In this case, what voiding meant was turning off the 5V power supply to that extra wire until the stretch sensor returned to normal. This Stills from a video illustrating the functionality of the first bladder implant prototype.

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was meant to simulate the implant’s functionality; a sensor would be embedded in the exterior wall of the bladder taking the place of the stretch sensor, and probes would be attached to the external urethral bladder taking the place of the 5V wire. This design was problematic because irritating the bladder and implanting something into its wall can lead to the onset of cancer.

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The second bladder implant prototype.

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My second iteration on the implant’s design placed one electrode array on the pelvic nerve, which signals to the spinal cord that the bladder is full, and another on the pudendal nerve, which innervates the external urethral sphincter. The latter sends a constant voltage to the muscle to keep it closed. Upon observing increased neural activity along this nerve, the implant messages the user’s phone, which is when he can decide to void it. When the user decides to void, the voltage being supplied by the second electrode array is ceased while the bladder empties. In the prototype, a liquid sensor, solenoid valve and peristaltic pump were employed to prototype the human urinary system.

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A detail shot of the second bladder implant prototype circuit, which was powered by Arduino.

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On this spread and next: Stills from a video explaining the functionality of the second bladder implant prototype.

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Sprint V: Campaign Design For the final lens of the thesis design sprints, I conceptualized Unbound as a campaign. Ever since I first conceptualized the dystopian scenario for my codesigning workshops, I’ve wanted to explore the concept of disability protest.

A recurring theme that I saw in my interviews was that wheelchair users felt excluded from society, that the thread of ableism ran through social relationships, economic relationships, and the built environment quite prominently. In my co-designing workshops, when I was encouraged to think of futuring scenarios that would spawn product ideas in the minds of my participants, I kept thinking of a dystopian future, where government funding ran out, the economy bottomed out, and people abandoned the ADA as a needlessly economically punitive measure. I imagined that this would be the last straw for people with disabilities, who would begin to fight back and create a new form of “productive protest” whereby they vandalized property in order to make it accessible.

In this final sprint, I was inspired by the creative and unconventional methods that an artist known as Wansky employed in Manchester, England to compel his local government to fill potholes in the roads. By drawing phalluses around potholes and using vulgarity to his advantage, Wanksy drew attention to a problem that plagued the built environment around him and was successful in getting a lot of the potholes that he targeted filled.70 I wanted to design a typology of vandalism that would similarly draw attention to accessibility concerns.

I began by focusing on the New York City subway, notorious for its inaccessibility. I explored whether disability protest in this context meant crossing out all of the inaccessible stations on a NYC subway station map in an act inspired by the work of transit enthustaist Matthew Ahn,71 or spray painting messages that indicated to the broader community how inaccessible the subway was and “creating” or claiming handicap accessible seats within the train.

Opposite, the artist Wanksy covers potholes with phallic art to compel local government to repair them,72 and Matthew Ahn’s accessible subway map, which marks the stations accessible via elevator.73

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I expanded my focus to restaurants, recognizing that these nodes of social engagement are oftentimes inaccessible — some in ways that are more blatant than others. I imagined that the disability protest movement would come up with a rating system, similar to the health ratings that can be found in restaurants around New York. For example, this McDonalds has stairs leading to the entrance, while Fette Sau, a barbecue destination in Williamsburg, is accessible from the outside but is very cramped inside, with accessibilityunfriendly furniture.74

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I then turned my focus to larger institutions that included the hugely popular transportation services that don’t cater at all to the needs of the disabled,75 and the court system in New York City. The latter’s inaccessibility76 in the form of broken down elevators and insufficient accessibility infrastructure, and the disenfranchisement that stems from it, is particularly alarming and criminal.

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Design Sprints: Conclusion The sprints were an essential component of the design process, and allowed me to rapidly distill the research that I had conducted into concrete design work, which was, in its own way, a form of research. As the sprints concluded at the close of the fall semester and I surveyed the work that I had done over the previous semester, a theme began to emerge in the work that I had designed — a theme that would become the central problem of the double diamond methodology, and the central focus of my thesis.

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