NAE Perspectives offer practitioners, scholars, and policy leaders a platform to comment on developments and issues relating to engineering. 

Ashley Shew is associate professor of science, technology, and society, Virginia Tech
Hanna Herdegen is a PhD student in science, technology, and society, Virginia Tech

Five years ago, we received funding from the National Science Foundation to gather, sort, and read narratives from disabled community members about technology. We were seeking to identify broad themes in the ways in which disabled people discuss technology, particularly those technologies made for disability. Our goal was to compile educational resources for engineers and others interested in producing disability tech, with an eye toward improving understanding and communication between makers and disabled users in research, educational, and commercial settings. 

The stories told by disabled people often diverge from the usual tropes and stereotypes that the wider public and engineers believe accurately reflect disabled experience. For so long, nondisabled people have been the experts on disability. We’ve been given stories that frame disability in terms of pity, shame, grotesquerie, and bravery in the face of adversity. Medical accounts define disability as lowering the quality of a person’s life. There are huge assumptions about what disabled people can do and what jobs are appropriate (if a job is possible) -- and assumptions that see our prospects for romance and a fulfilling social life as impeded by our embodiment and that frame disabled people as lacking, as broken, as lesser. Engineers can easily default to these narratives of disability -- which are supported by our wider culture and infrastructure -- when they think about disability and design.  

Disabled people’s successes and failures play into these narratives; these narratives are inescapable. If we achieve and live “normal” lives, we are taken as exceptional and special for doing so. If we are successful, we are told that we aren’t “really disabled,” a dig phrased as a compliment. If we fail to achieve -- and often this happens due to societal barriers, low expectations, secondary and unequal inclusion, and very real hatred of difference (to which the many autistic people who are told they are rude for stating things frankly can attest) -- then we just confirm their beliefs. There are very few “good” or easy ways to live a regular sort of life in the face of these overarching narratives.  

We call for new narratives for more ethical and engaged engineering practice where it concerns disability. Authentic disabled narratives – by which we mean the stories disabled people tell for themselves about themselves – are desperately needed, and the disability community has plenty. However, disabled people have so rarely gotten to be the experts on themselves that their stories have often been written over and transformed for nondisabled consumption. This holds true for our stories about technology. When we discuss our decision not to use available tech, we are seen as noncompliant or ungrateful. When we talk about new technologies as tools that are sometimes useful, new disabled tech gets lauded as transformational, all while many disabled people wait for maintenance of technology we already have.  

News stories and promotional content about new devices use our voices when convenient, but often diminish or altogether exclude complicating or dissenting views. All of this sometimes leads designers and engineers to believe we have no opinion–or, if we do, that it is uneducated, unreasonable, or only an echo of techno-favorable opinion they could easily find anywhere, without taking the trouble of consulting a diverse group of actually disabled people. This is not to say that engineering, in particular, is at fault; the field is no more at fault than any of the rest of us raised in cultures that devalue disability. But here engineering has an outsized role due to its ability to shift these narratives.  

The technologies engineers produce for disability are created in the context of the same faulty disability narratives about disabled experiences. As such, those technologies can’t help but be faulty themselves--at times because they attempt to fill a need that does not exist (which the #DisabilityDongle hashtag created by Liz Jackson attempts to highlight), and at others because their accompanying fanfare overshadows a real, more pressing need that exists elsewhere. The context of our lives is such an unknown for some; systems of insurance and maintenance, and all the paperwork it takes to even be counted as disabled are clearly not within the knowledge base of many engineers. 

So many of the stories we receive throughout our schooling have reinforced negative and inaccurate narratives about disability. We are told the story of Helen Keller in her early childhood, the one where “the miracle worker” – who, we will note, is not Helen herself, but Annie Sullivan, sent from Perkins School for the Blind to teach her – intervenes and runs water over Helen’s hand while signing “water” until Helen understands. We hear nothing of Keller’s progressive and socialist views, her graduation from Radcliffe, her correspondence in several languages over the course of her life, or her lifelong friendship with Annie Sullivan, who was legally blind and only 14 years older than Keller. We don’t get the story about two disabled women in a relationship of care and empowerment, or anything about what these women thought about the world, politics, or each other. We get a story of a savior in the context of deficit and loss, of a gifted teacher who educates a pitiful and unruly disabled child about proper communication and good behavior. We get archetypes that suggest that disabled people’s very existence calls out for help and intervention, and that individuals who work with disabled people are heroes and “miracle workers.” 

We never get the stories that suggest structural forces are at play in disabled people’s lives. Conventional stories about Harriet Tubman often downplay or leave out Tubman’s brain injury. As a 12-year-old, she was hit in the head by an “overseer” who was trying to track down an enslaved person who had run away. Tubman had seizures and narcolepsy-like sleeping spells for the rest of her life – including throughout her time leading people on the Underground Railroad and as a spy for the Union Army. This work was definitely more dangerous for her as a disabled woman (so stories of her badassery are even more badass). But this addition to Tubman’s story also implicates and highlights the brutalities of enslavement, the role of law enforcement in such a system, and how economic systems are cultural, social, and political in ways that have power to maim and kill.  

Stories about disability do a cover-up job on our real lives. None of our stories are actually Helen Keller stories – not even Helen Keller’s! While we give and receive care, we don’t frame our experiences with one tidy, inspirational message, or exist simply for a helper to shower their goodness upon us. We assert agency over our own lives – often to the frustration of institutions that would see independence as a lack of proper compliance. We don’t necessarily see ourselves as pitiful, inspiring, or even radically different. For those of us with a before and an after (i.e., for those of us that acquired our disabilities), there is often an adjustment period, but we’re not wholly different people on the other side.  

There’s a greater context here too. We are still contending with the legacy of the disability civil rights movement and the disability justice movement. Disabled people are a historically marginalized group, and disability-based biases and expectations still impinge upon our lives. Disabled activists fought for the passage of the Americans with Disabilities Act, but disabled people are often forced to provide medical documentation from healthcare providers as a prerequisite to being afforded basic civil rights. Often our medical and technological systems still see disabled people as isolated problems, rather than as members of communities with shared histories and interests. We are seen in terms of individual diagnoses, expert opinions, and assessments of functionality – all of which point to the doctor, the technician, and the insurance provider as the credible witnesses to our lived experiences. We can rarely just say what we need and be believed on our own merit. 

Disabled people are treated as disparate, asocial, apolitical entities, and at the same time, categorically struggle to be seen from the outside as anything more than a lump sum. We lead varied, complex lives and yet are dismissed as belonging to a single, faceless mass– or, perhaps more accurately, we are all given one face: the face of Helen Keller, of the March of Dimes poster child, of Captain Hook. We are not allowed individuality. A ton of diversity exists within the disabled population; we don’t all have the same experiences when it comes to expectations, trust, and types of discrimination. Many of us experience marginalization from multiple directions, each inflecting our experience of disability. But our individualities are painted over in popular narratives and even in settings where so-called experts ought to be prepared, if only out of professional interest, to appreciate our unique experiences and embodiments. Often, and especially in critical moments of intervention, these oversights turn from casual slights to outright neglect; they add weight and pain to already-painful encounters with medicine and technology and sometimes prevent us from accessing necessary care altogether, resulting in illness, injury, and death. 

In our work on disabled narratives, we’re tracking counternarratives that disabled people use when they write about technology: stories about technological ambiguity, disabled makers, and community exchange that don’t typically make the news. This fall, we’re sharing these materials in an open textbook format with short modules to facilitate more disability-led narratives within engineering classrooms. We don’t think these materials replace actual engagement with community; we do think that these materials will set classrooms up to be less extractive of disabled people. So often, if any disabled person is brought into the classroom at all, one person is brought in to represent us all where it pertains to a particular design, usually pretty far in the planning. That’s a lot to carry for any one disabled person. We think about technology as being for communities – and that means building care, maintenance, and future planning into what we make and what we take as good.  

Disclaimer 

This material is based upon work supported by the National Science Foundation under Award No. 1750260. Any opinions, findings, and conclusions or recommendations expressed in this material are those of the author and do not necessarily reflect the views of the National Science Foundation. 

The views expressed in this perspective are those of the author and not necessarily of the author’s organization, the National Academy of Engineering (NAE), or the National Academies of Sciences, Engineering, and Medicine (the National Academies). This perspective is intended to help inform and stimulate discussion. It is not a report of the NAE or the National Academies. © National Academy of Sciences. All rights reserved.