In both conference submissions and grant writing, writers are often asked to describe the broader impact of their research. In some cases, writers may be asked to address how their work will contribute to diversity and equity in their field. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. While there is significant interest in developing assistive technologies for disabled people, this work is often done by non-disabled academics who make problematic assumptions. The purpose of this blogpost is to:
- discuss the medical vs social models of disability.
- highlight the use of inclusive design principles to improve accessibility of your research.
- demonstrate the importance of communicating often with your desired target audience (‘nothing about us, without us’) for a technology throughout the research, design, and testing stages.
The medical model of disability defines disability as a defect within the individual. Under the medical model, disabilities should be ‘fixed’ or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness. This model looks at what is “wrong” with the person, instead of looking at what the person needs.
Alternatively, the disabled community generally prefers an alternative framework to engage with disability: the social model of disability. The social model of disability is context-dependent, and views disability as a form of exclusion propagated by a society that discriminates against people who are seen as being impaired. In this framework, disability is not seen as a set of mental or physical differences, but as a complex set of interactions across physical, cultural, and political environments that shape perception and human experience. The social model of disability makes the distinction that disability is only disabling when it prevents someone from doing what they want or need to do.
Inclusive design is a process based on the social model of disability that seeks to alleviate barriers to access, thereby increasing the number of audience members who can access and accomplish the main goals of the interaction. This means considering questions like who is served and supported by current processes, and how we might adapt designs to be inclusive for more students. Inclusive design is an iterative process that requires constant re-evaluation of design choices to recognize how choices can open up forms of exclusion and barriers for learners. In this blog, we will highlight three case studies from research projects that approach disability in different ways, and describe how inclusive design principles could have been applied.
Case Study 1: Relying on the Medical Model of Disability Creates Designs that Fail to Meet User Needs
A key tenet of inclusive design is intentionally centering the voices and experiences of people for whom you’re designing, especially those who are typically marginalized by design. Otherwise, we can unintentionally reinforce barriers to access for disabled users. Consider the development of a robotic cane from Stanford’s Intelligent Systems Laboratory. In an interview with the graduate student and first author of the project, the student shared that he wanted to create “something more user-friendly.” But this attitude ultimately demonstrates a poor understanding of what blind people enjoy about canes. Current canes are lightweight (0.5 lbs), easy to carry, effective, and cheap, whereas the smart cane weighs in at 3 lbs and costs $400. The first author of the project goes on to state that the smart cane can improve walking speed among the test users, and that “increased walking speed is related to better quality of life.” This is an incredibly misguided notion about the lives of cane users, as Cricket Bidleman writes in the Stanford Daily,
“The “smart cane” assumes misguided notions of quality of life. The developers cite improvements in walking speed for both sighted and blind users while using this cane, and the [researchers] claim that “this can provide a significant improvement in terms of their quality of life due to improvement in mobility. This kind of assumption is deeply troubling and offensive, because a person or group of people is projecting their image of quality of life onto the disabled.”
The problem with the smart cane project, and the issue with work like this more broadly, is that it is assuming that disabled people have incomplete lives compared to abled people. This type of research is aligned with the medical model of disability, where disabled people are seen broken and in need of repair. In this specific case, the researchers assumed that disabled people were using canes as an aberration from the norm, and thus in need of fixing.
The rhetoric surrounding the development of the smart cane exemplifies technoableism; the harmful belief that technology is a solution for disability. This term was coined by Ashely Shew, and refers to the phenomena common in the engineering and tech industry that narratively frames technology as a cure for disability. Through the rhetorical framing of their work, these researchers ultimately influence how broader society imagines disabled people. These framings ultimately create a shallow and misleading portrayal of disabled people, and neglect to acknowledge a rich culture of disability pride.
If inclusive design principles were used in this research project, the smart cane would be significantly overhauled to be cheaper, and lighter. Cane users could have been involved from the start of the problem solving process to help the researchers learn about what works well and the needs of the user. Alternatively, inclusive design principles and the social model of disability could also be applied to help the researchers involved develop a more nuanced understanding of cane-users themselves. Under the social model of disability, researchers would have recognized that using a cane itself is not a problem, and that canes have many desirable qualities that cane-users enjoy. Canes are lightweight, cost-effective, and provide sound feedback that people can use to further characterize their environment. Canes are also simple, trustworthy, and reliable, and don’t require software updates or repeated fixes to work. If something were to go wrong with a normal cane, the user can easily troubleshoot because they have a complete understanding of the cane as an instrument. A sensing augmented cane can give strange information, ruining the trust the user has in the device, and thus defeating its purpose. The research project demonstrates how research can be misdirected when the voices of those who could benefit are not included from the onset.
Case Study 2: The Medical Model of Disability Removes User-Autonomy and Historical Context
Inclusive design seeks to understand the context by which technologies will be applied, to better understand what barriers are implicitly being created through technology. One contentious example of technology development for a disabled community is sign-language gloves, which aim to translate sign language in real time to text or speech as the wearer gestures. One of the first sign-language gloves was developed by a high school student from Colorado who fitted a leather golf glove with 10 sensors that monitored finger position, and then relayed finger spellings to a computer with text on screen. Despite the fact that the glove couldn’t translate anything beyond individual letters, and only worked with the American Manual Alphabet, the glove went on to win the 2001 Intel International Science and Engineering Fair and a $100,000 scholarship. Since 2001, numerous research groups and companies have sought to develop sign language gloves, and received attention and thousands of dollars despite the fact sign language gloves are only able to translate a small set of words, and not complete sentences. These automated gloves require Deaf users to use a butchered variant of sign language that requires the signer to sign in an English sentence structure. American Sign Language is not a linear translation of English via hand signals, it has distinct sentence structures, vocabulary sets, and grammatical elements. While these gloves seek to translate finger signs, many of the grammatical elements of ASL are conveyed using facial expressions and body language, something that cannot be captured through these gloves.
Implicitly, sign-language gloves are relying on the medical model of disability by treating sign language as something that needs to be ‘corrected’ so that non-Deaf people can understand what is being said. Sign-language gloves put the burden on the Deaf person to translate themselves for others. This is troubling, as these efforts to automate sign language translation strip the Deaf community of the language they communicate in, and ultimately mandate an ‘easier’ ‘universal’ communication variant that the non-Deaf use. Sign language holds tremendous cultural and developmental importance to the Deaf community, and has been shown to have numerous benefits including enhanced cognitive development, improved social skills, and increased access to information and communication [1]. Despite these benefits, it was only in the recent past that sign language was formally recognized as a distinct language with its own grammar and phonologies. Prior to that, there was a concentrated movement in deaf education to ban sign language and force all Deaf people to speak instead [2]. When sign language gloves are being developed, they are not only alienating signers, but echoing historical context that sought to eliminate sign language in its entirety.
If inclusive design principles were used in this case, researchers could brainstorm methodologies to better teach sign language that do not place the burden of responsibility on the sign language user. While there are genuine desires from non-signers to communicate with a sign language speaker, using a pen and paper is a sufficient alternative, and there are serious concerns around resource allocation for these research projects. Due to historical persecution against sign language, many Deaf people have had issues learning the language due to underfunding and sparse availability of Deaf language schools. Rather than creating a glove that would translate sign-language, people should sincerely reflect on if the research could be better spent making sign language education accessible to more people. This research project demonstrates the importance of identifying the broader context of the work that you are doing, to be respectful of the history of the population that you are working with.
Case Study 3: Collaborating with Disabled Users Leads to Better Designs
In the MIT Assistive Technologies Hackathon (ATHack), teams work directly with a community member who lives with a disability, to develop solutions to the barriers the clients face. In the weeks prior to the hackathon, the teams meet with a community member to get a better sense of the kinds of assistive technologies that could help them live more independently. Then, during the hackathon, the students work with the community members to build hardware and software for their use.
For one project, a team of students collaborated with Adriana Mallozi to design a new device for her to use to operate her smart devices. Adriana has cerebral palsy and limited upper body dexterity, which makes using her hands to operate a phone difficult. Together with Adriana, the team fabricated a custom bluetooth joystick, named Puffin, that was controlled via inhaling (“sipping”) and exhaling (“puffing”). During the hackathon, Adriana Mallozi successfully used Puffin to take pictures with her smartphone. This hackathon project was later spun into a company – Puffininno, where Mallozi is the founder and CEO. The initial Puffin prototype has been adapted to include a customizable mounting system and a bluetooth capability so users can independently control their smart home devices like lights, doors, thermostats, and speakers. As Adriana Mallozi writes about the power of the product,
“When you have to rely on others for every aspect of your life, which basically I have to, the small things really matter. Any type of control that you can have over your life is a really big deal, for instance having full control of my mobile phone and access to apps such as Lyft and Uber. People with disabilities who rely on others for their daily living activities have very scheduled lives and it’s little things like that, that make a difference.”
This project is a good example of using inclusive design principles early in the design process to make the technologies involved useful and relevant. Rather than assuming what Adriana would need, teams spent extensive time getting to know her and understanding the challenges she faces due to inaccessible designs. In this case, the team came to find that inhaling and exhaling was an easier control mechanism than using her hands. This design selection recognizes the woman’s personal autonomy in the design process, and works with her to come up with a solution rather than engineering a solution for her.
In the 2019 MIT Assistive Technology Hackathon, one team worked with a client who needed a portable bidet so that they could safely and efficiently use the bathroom outside of their home. A lack of bidet in public spaces meant the client would need a personal care attendant with them at all times in case they needed to have a bowel movement outside of their home. Personal care attendants (PCAs) are incredibly expensive, and the client shared they would not leave the home on days when their stomach was upset, and even shifted their meal patterns to avoid eating at work for fear of aggravating their stomach. The client disclosed that the stress of finding an accessible bathroom has negatively impacted their self esteem, as well as their personal and professional relationships. To address the client’s concerns, one hackathon team built the Bom-Bidet, a portable bidet for users who have limited range of motion in their arms.
As with the Puffin design, the students applied inclusive design principles to empathize and understand the user of their intended project. In doing so, they worked to address some of the key limitations of the PCA option: the cost and lack of autonomy for the client. The students focused on using low cost items like water bottles, food safe tubing, and aquarium motors. The solution they developed costs roughly $48 for materials, and involves items that can all be bought from Amazon. The students also developed an in-depth instruction manual for others who may want to replicate the design. Through inclusive design principles and the social model of disability, the students were able to engineer a solution that provided real benefit to this specific client. As demonstrated here, the best ideas always start with a real problem that a disabled person has, and finding ways to help that specific problem.
Summary
In this blogpost, we first introduced the medical and social models of disability, and discussed the importance of relying on the social model of disability in the design process. Inclusive design is an integral part of the design process, as it seeks to constantly re-evaluate how design choices can open up forms of exclusion and barriers for users. We emphasize the importance of designing collaboratively the intended users by engaging in a meaningful dialogue with disabled users and, when possible, including disabled engineers in the process. This collaboration will require engineers to understand the needs of the user they are designing for, rather than assuming them. As our case studies demonstrated, inclusive design principles led to more useful, cost-effective, relevant, and efficient designs.
Others Resources and Recommended Readings:
- Accessible Communication CommKit
- Inclusive Language Guide
- Social vs Medical Model of Disability
- The Design of Everyday Things by Don Norman
- “Against Technoableism” By Ashley Shew
Acknowledgements
Thank you to Sophia Vlahakis and Brian Mernoff for reviewing this article.
Citations:
[1] Bennedit, B. S., and Legg, J. “Deaf Culture & Community”. Hands & Voices.
[2] Marks, M. “Linguistic Neglect of Deaf Children in the United States”. Spring 2020