Establishing Equity when Creating Accessibility Devices

Three disabled POC walking down a street on the sidewalk side-by-side. The one on the left is using a cane and fidget toy, the one on the right is walking along, and one is in between them using an electric chair. They are all smiling. Disabled and Here, Creative Commons License

Despite comprising 25% of the United States population (Okoro CA), disabled people are underrepresented in healthcare and biotechnology, especially considering that these individuals are the target consumers of many healthcare products and services. As a disabled bioengineer and business professional I have witnessed astonishing feats of engineering aimed at aiding disabled people: glasses that communicate images to a microchip implanted in the retina that enables people with retinitis pigmentosa to read large font and visual cues, paired glucose monitors and insulin pumps that reduce anxiety for people with diabetes and any caretakers that worry about falling glucose levels at night, and exoskeletons that improve rehabilitative therapies for patients debilitated by stroke. However, companies that create and market these devices often ignore Quality of Life outcomes, metrics that determine how a person’s life is improved by device usage, beyond biological metrics such as HbA1C levels for measuring glucose levels or how many steps an individual can take. This limited viewpoint fails to acknowledge that these are ultimately accessibility devices, products that enable inclusion of the underrepresented within society. This flawed perspective stunts the process of how to imagine, create, and deliver these devices to the user, and is in need of remedy in order to properly include disabled people as equal beside able-bodied people.

Accessibility can be understood as an attempt to create environments that accommodate a person wherever they may go, whether it is their home, place of work, or social outings. While accessible devices are physical manifestations of this intent, while initially noble, the origin and foundations of this intent can be maligned with the needs of disabled people, leading to impracticality. This disconnect between current/proposed solutions and addressing needs stems primarily from a lack of representation which fails to bolster the agency of disabled people, the ultimate goal of any accessibility device. In a free market, the responsibility for addressing this disconnect falls primarily on corporations, entrepreneurs, and individuals to navigate their environment as best they can. These factors lead to the creation of what Liz Jackson, an experienced disability advocate and design strategist describes the flashy devices produced by industry as “disability dongles”, which are complicated, flashy, and impractical proposed solutions for real and everyday obstacles in the lives of disabled persons. Examples include an $33,000 electric wheelchair whose only apparently notable function is climbing stairs at a slow pace, canes that attempt to communicate obstacles to the blind that should not exist in the first place, and monitoring devices that detract from daily activities with constant bombardment of notifications. Other scenarios include a lack of solutions to begin with, or the mismanagement and absence of proper support and marketing for solutions that are impactfully helpful (Fritsch).

Movements to improve the quality and quantity of medical devices have a long history, including self-advocacy groups and attempts at communicating more effectively with disabled populations (Bethlyn Houlihan et al). These groups and actions have sought to address structural problems in a way that overcomes the market-oriented problem identified in the previous paragraph. Originating from discrimiation against and negative perception of disabled people, or ableism, these problems are persistent. Ableism is both a consequence and foundation for ignorance of the challenges of disabled lives, resulting in neglect and dehumanization when people in positions of power decide that solutions are not worth their time, effort, and emotional bandwidth. However, since most contemporary attempts at accessibility aim to change how disabled people interact with society instead of adapting society to people, there will be no substantial biopsychosocial improvement in the quality of life offered by accessibility solutions. Currently, in capitalist societies disability is defined as an inability to properly contribute to the environment (Russell), and thus free market enthusiasts may argue this is a fixed point. In opposition, this paper will establish that improved social frameworks and entrepreneurial models can alleviate this stop-gap in accepting disabled people into public spaces. This article will touch on the customer-development model of entrepreneurship and the jobs to be done theory and further installments in this series will delve into others.

Teaching Future Entrepreneurs to See Beyond the Product

Reflecting a culture of rugged individualism entrepreneurs falsely learn that if you create a “perfect” product, it will instantly attract customers and become the leading brand on the market. Notable entrepreneur and founder of the “lean startup model” Steve Blank labels this ideology the product development model and the “path of disaster.” His model (Blank) includes a basis for addressing market concerns which he calls “the customer development model.” His proposal starts with a quick case study of an ardent furniture salesman who has extensively consulted consumers within his target market only to be told by investors that they are unimpressed with his refusal to follow product trends set by a competitor selling bargain mass-produced furniture online. The case study concludes with the salesman successfully accumulating funds to sell high-quality, quickly customized and shipped, designer items to his clients as they desired, and successfully thriving unlike the later bankrupt online retailer. This model carries over to how accessible devices are/can be developed. The customer development model here serves as a guiding companion for the product development model, a lens through which one can avoid the pitfalls that come with overlooking the concerns a disabled person might bring up apart from going from point A to B.

The customer development model, notice the iterative loop in the beginning to constantly learn more about the customer.

Blank originally noted the model is rooted in discovery, learning, and a constantly iterative process. This reflects one of the core concepts proposed by accessibility advocates, that there is no definite end goal for inclusion of disabled persons, only a process that continually improves inclusivity. Especially when disabilities are diverse not only in their different origins but also in how they present in others, the iterative process included in the customer development model offers flexibility and robustness in tackling these concerns.

Thus we can see that disability dongles follow the product development model, where products are solely seen as engineering triumphs over social or physical obstacles. When we look at an electric wheelchair that scales steps, we can say that particular piece of technology excels at the task it was designed to do. But this process has produced an expensive and overengineered, and yes ingenious, solution to a problem that no one had. Was it developed with the customer in mind, addressing all of their needs for a mobility device? Can this wheelchair properly navigate the obstacles a disabled person faces on a daily, if not hourly and minutely, basis, beyond arriving at Point B? Can it assist in social settings with friends, enabling hugs, or ensuring clothes do not get stuck in the tire treads? Is the chair portable enough, quick enough, thin enough, and designed with aesthetics in mind? When designing a device, entrepreneurs have to locate their customers, discuss the jobs they need to get done as opposed to the jobs that society dictates doing, and ensure those are a priority. If your device doesn’t fulfill the needs of a disabled person throughout the day, or if it requires a trade-off whether it be comfort, speed, or effectiveness, there is a disincentive to use it for the customer. This is where using the jobs-to-be-done framework enables entrepreneurs to respectfully discuss challenges with disabled people and create a fertile foundation for designing, producing, and delivering accessibility devices.

The Jobs To Be Done Framework and Discovering the Real Customer

The nature of inaccessible spaces requires disabled people to carefully choose how to spend their energy, time, and other resources. Even after exhausting themselves they have only gained the same status that any able-bodied person would have in that same situation. Considering the extra work of navigating the environment in mind must be the priority for any entrepreneur interested in accessibility. Clay Christensen’s Jobs-to-be-Done Framework too rarely discussed approach to this problem. In one example, Christensen deconstructs the roles that a simple milkshake has for an individual and thus what motivation drives purchase. It turns out that people buy milkshakes to waste/use up time, not because of their desire for a frozen treat specifically. He arrives at this conclusion only after directly conversing with the customer as to their thought process when purchasing. In marketing accessibility devices, an entrepreneur should ask the question “Is climbing the stairs or crossing the street the end goal?” Note that Christensen does not analyze the situation with the perspective of a what a socially common idea for a milkshake might be, but of how the individual chooses to interact with society and make their time within it more enjoyable. Knowing inaccessibility demands resources of disabled people that are already limited, and inaccessibility is the product of the environment excluding disabled bodies, entrepreneurs should then ask if the responsibility of jobs to be done fall upon the shoulders of a disabled person. and if that job should fall upon the community to fix.

If we take Russell and Rosenthal’s definition of disability disabled persons “rise” to performance demanded by a capitalistic system in order to be considered a fully-functioning contributor, and to do so requires completing “jobs-that-need-to-be-done” that are demanded. This can include entering their place of work with enough energy to be productive, keeping themselves presentable according to ableist standards, not distracting others, and obligating themselves to schedules that do not cater to reduced physical and mental levels.

Entrepreneur’s should target failings within society; ie. the lack of elevators and ramps, visual and audio cues for the deaf and blind communities, unstated social and professional standards within academia, private companies, and places of socialization. When considering solving perceived problems around accessibility, one should ask “Am I forcing disabled people to rise to ableist standards, or should I ensure that society meets the underserved and disenfranchised where they are? And am I doing that in a manner to ensure their needs are met?” “How can we transfer this job to be done to the shoulders of environment, and make that work for the disabled?” I’ve created several questions and processes to follow through to improve entrepreneurship, facilitate communication with the disability community and grant them agency, and to properly rectify environmental and social deficiencies that create obstacles for disabled people.

Proposed Framework

Below is a methodology for brainstorming, creating, and marketing accessibility devices that follows a hierarchy of responsibility towards ensuring accessibility prioritizes freedom to the marketed disabled population.

Question 1: Does the disability community already have a solution for the problem you have identified?

1. If so, consult with the users to determine if they desire any improvements to their solution or if they prefer greater societal acceptance of it. How can you be an advocate to increase inclusion of the disability community? Can you supplement that solution instead of creating a device that requires new training, difficulties, or any sort of disruption to their routines?

Question 2: When designing your device, follow the customer development model to establish the following standards:

1. Incorporate disabled voices as priorities into your observations of the market, the design of your device/service, and your marketing. This will establish the actual needs and wants of the community you are marketing to, not the perceptions from outside the community of what their needs/wants “should” be. A popular phrase in the disability community speaks to this: “Nothing about us without us.”
2. Establish a robust customer base that can extend beyond their use of your device and drive social change. Enacting change, whether social, legislative, or financial, gives accessible device/service more large scale support and enables it to enjoy continued success. A great example is the JDRF, a powerful advocacy group for people with diabetes, working with biotech companies to pressure the Centers for Medicare and Medicaid Services to cover continuous glucose monitoring devices (Medtronic Diabetes).
3. Does your device empower disabled people to become better self-advocates? How can you learn to be a better advocate from your customers? Empowering your customers and letting them educate you will drive more effective movements for societal change.

Question 3: Evaluate the jobs-to-be-done to be completed by your device. Does your accessibility device/service require additional resources (time, energy, mental focus) on the part of the disabled user?

1. If so, can this be shouldered by the environment, ie. local business or organization, government, or community? If not, reevaluate your device/service and determine if it would be feasible to market towards whoever controls the environment.
2. If the device is necessary and the jobs-to-be-done cannot be shifted from the disabled, consult with them and let them take charge in dictating how they would they desire to complete the job.

Sources

1. Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:882–887. DOI: http://dx.doi.org/10.15585/mmwr.mm6732a3external icon
2. Fritsch, Kelly Michelle. The Neoliberal Biopolitics of Disability: Towards Emergent Intracorporeal Practices. June 2015. yorkspace.library.yorku.ca, https://yorkspace.library.yorku.ca/xmlui/handle/10315/30671.
3. Cerebral Palsy Foundation. “The Cerebral Palsy Foundation Launches New Universal Homes ‘Accessibility Is Beautiful’ Initiative on Global Accessibility Awareness Day 2019.” PR Newswire: Press Release Distribution, Targeting, Monitoring and Marketing, 16 May 2019, www.prnewswire.com/news-releases/the-cerebral-palsy-foundation-launches-new-universal-homes-accessibility-is-beautiful-initiative-on-global-accessibility-awareness-day-2019-300851954.html.
4. Bethlyn Houlihan et al. Topics in Spinal Cord Injury Rehabilitation 2016 22:1, 13–26
5. Russell, Marta, and Keith Rosenthal. Capitalism & Disability. 2019. Open WorldCat, http://search.ebscohost.com/login.aspx?direct=true&scope=site&db=nlebk&db=nlabk&AN=2088479.
6. Blank, Steven G. The Four Steps to the Epiphany: Successful Strategies for Products That Win. 3rd ed, S. G. Blank, 2007.
7. “Expanding Global Access Via CGM Reimbursement | Medtronic Diabetes, Between the Lines.” Between The Lines Blog | Medtronic Diabetes, 27 July 2016, https://www.medtronicdiabetes.com/blog/expanding-global-access-via-cgm-reimbursement/.