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40 0278-0097/20©2020IEEE IEEE TECHNOLOGY AND SOCIETY MAGAZINE ∕ MARCH 2020
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Date of cu rrent v ersion: 2 M arch 2020
© AP IMAGES
Ableism,
Technoableism,
and Future AI
Ashley Shew
Capitol Crawl, Washington, DC, 1990.
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41MARCH 2020 ∕ IEEE TECHNOLOGY AND SOCIETY MAGAZINE
bleism (discrimination in favor of non-
disabled people and against disabled
people1) impacts technological
imagination. Like sexism, racism,
and other types of bigotry, able-
ism works in insidious ways: by
shaping our expectations, it
shapes how and what we design (given these expecta-
tions), and therefore the infrastructure all around us.
And ableism shapes more than just the physical envi-
ronment. It also shapes our digital and technological
imaginations — notions of who will “benefit” from the
development of Ar tificial Intelligence (AI) and the ways
that those systems are designed and implemented are a
product of how we envision the “proper” functioning of
bodies and minds.
This article is divided into three parts. The first part
explains what ableism is and how it warps our beliefs
about what it is to be disabled. This section also explains
reactions against a medicalized approach to disability,
which informs some approaches to disability design,
drawing from cases of design for disability that reflect
implicit ableism. The second part of this article turns to
ableism in technological development more broadly. It
gives overviews of several case studies illustrating able-
ism in technological development and tech enthusiasts’
lack of interest in listening to disabled people’s ideas
about and experiences with technology and disability. I
will also unpack the concept of technoableism, a specif-
ic type of ableism around hyped and emerging technolo-
gies. This section examines the larger issues that
influence how people imagine (or neglect) disabled bod-
ies and minds when they set out to design new technolo-
gies. The third part turns to specifics, examining news
coverage of AI and design, focusing on specific techno-
logical developments that extend ableist bias into emerg-
ing areas of design. This section discusses the
relationship between disability and aging and examines
home-based AIs aimed at an aging population, particular-
ly the design of the interfaces between these AIs and the
humans who are supposed to use them.
The ableist attitude that disability is always a negative
and always an individual problem extends into our ideas
about and designs for the ideal future. By considering
the relationship of minds and bodies to communities
and infrastructure, and by examining how ableism and
technoableism currently affect our narratives about the
world, we can anticipate and prepare for our technologi-
cal futures as Artificial Intelligence and machine learning
are sought as technologies for disability.
Ableism
Many people see their disability not as a tragic event but as
an important identity or experience in their lives. Common
disability tropes — which depict disability as pitiful or
shameful, as punishment for sin or wrongdoing, as obsta-
cles to overcome, or as laziness or fakery — obscure the
real experiences of disabled people and the sources of our
frustrations. Ableism is a preference, explicit or not, for
bodies and minds that are nondisabled and the resulting
negative attitudes toward disability and disabled people.
Ableism shapes our expectations and perceptions. These
preferences (which may be obvious or subtle) against dis-
ability and disabled people are made manifest in the built
environment and in the structural and social norms that
shape daily life. Like other forms of bigotry and bias, such
as racism, sexism, classism, and transphobia, ableism is a
form of prejudice or bias.
Ableism underpins those practices and environments
that exclude disabled people from community life (either
intentionally or through poor planning and design), that
discount first-hand accounts of the experiences of dis-
abled people (often positioning nondisabled people as
experts about disabled people), and that marginalize, or
inhibit the contributions of, disabled people (for example,
through teaching no disability history or teaching stories
that perpetuate the notion of disabled exceptionalism).
Moving Against the Medical Model
While there are multiple models for how we might under-
stand the interaction of bodies in the world, work in dis-
ability studies over the past thirty years has moved
against the dominant model of disability, the medical
model, which explains all disability as biological impair-
ment. As historian Kim Nielsen [32] explains, “This frame-
work considers disability to stem from bodily-based
defects and tends to define disabled people almost exclu-
sively by those diagnostic defects (and supposedly non-
disabled people by their lack of such defects” [32, p. xiv].
In this model, the appropriate response to disability is to
try to rehabilitate, cure, fix, or otherwise alter the individ-
ual; when cures or fixes are not available, it pushes peo-
ple who are disabled to perform, to try to pass for
nondisabled.
In the medical model of disability, all impairments,
whether bodily or mental, are individual problems to be
addressed. The medical model’s focus on individuals
detaches people from the larger context in which disability
is constructed and deployed, and in which it must be
understood. The medical model ignores the contexts, his-
tories, identities, and social factors that have shaped the
category of disability, instead pushing ideas of cure and
proper performance back on individual disabled people.
As phenomenologist disability studies scholar Tanya Titch-
kosky [45] explains it, “[i]ndividualized conceptions of
1In this paper, I use identity fir st lang uage (dis abled per son) instead of per-
son first language (person with a d isabi lity). I identify a s a disabled person.
Other aut hors have wr itten a bout thi s choice. See: [8], [26], [27].
A
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42 IEEE TECHNOLOGY AND SOCIETY MAGAZINE ∕ MARCH 2020
disability, such as the WHO’s, require that impairment be
treated as if it is the cause of disabled people’s lack of par-
ticipation in education, employment, leisure, and love”
[45, p. 5]. Rather than looking at the structures in which
people are valued or not valued — the social, environmen-
tal, and designed world — the medical model points to
individual failures to properly participate in education,
employment, and social environments. It then attempts to
normalize individuals for these existing environments
using rehabilitation, treatment, and therapy.
In contrast, disability studies, which encompasses
and connects disability history, literature, philosophy,
and activism, places disability back into context. And the
context is crucial — it creates the “norms” against which
disability is measured. Titchkosky writes, “Some notice-
able departure from the desired and expected is often
taken as disability… One cannot be disabled alone” [45,
p. 5]. By taking disability out of context and isolating dis-
ability as a “problem” of individuals, we fail to address
the real problems — the challenges literally built into the
world — that disabled people face.
For example, certain traits are only recognized as dis-
abilities in certain social and environmental structures.
In a society where most people are illiterate, dyslexia will
not be experienced as a problem, nor will people with
dyslexia be socially isolated or face reduced opportuni-
ties. When a more isolated Martha’s Vineyard was home
to a large population of Deaf people and most residents
knew sign language, Deaf people were not excluded or
isolated. Similarly, in places that are appropriately
designed, a person might find that a mobility impairment
would cause no dramatic shift in their social life and
would not limit where they could go. A person’s relation
to the world and to other people is central to how disabil-
ity is constructed. For example, in U.S. society, the traits
that are constructed as disabilities are (and have been)
related to the economic value of one’s labor on the mar-
ket — to the ability to work. Nielsen’s A Disability Histo-
ry of the United States [32] points to how notions about
ablebodiedness and disability changed across American
history as labor needs changed — ideas were construct-
ed around who would be a valuable slave, who could
work in a factory setting, and who could serve in the
armed forces. Disability is always situated in context; it
can never be truly understood as an isolated,
individualized problem, as the medical model suggests it
ought to be.2 This is not to say that disability never coin-
cides with medical issues; chronic illness itself consti-
tutes a disability, and many illnesses can lead to
disabilities. My own disabilities, for example, were
caused by treatment for cancer.
Disability Pride and the Narratives We Lack
Dominant cultural narratives (which shape the experience
of living with disabilities) tell us that disability is an individu-
al aberration, a pathology. We must resist these narra-
tives. As philosopher Elizabeth Barnes reminds us,
disability is a mere-difference (instead of a bad-difference):
The point is not… that there are no bad effects of
disability. We are, all of us, limited by our bodies.
Whatever way your body is, there will be bad
effects of having a body that’s like that. But the
disabled body is a pathologized body. It’s a body
that departs from the “normal” in ways we assume
are bad or suboptimal. Disability pride rejects this
pathologization. As disabled people, we are forev-
er being told that there is something about our
bodies that is lacking, that is less than. Disability
pride says it doesn’t have to be that way. Disability
pride says that we have minority bodies, but we
don’t have — we refuse to have — tragic bodies
[7, p. 186].
Disability pride serves as an antidote to a culture that
perceives disabled bodies as inferior. Disability pride
movements and disability activism, which demand equal
accommodation and opportunity, have united disabled
people. There is no reason to put blind people in the
same category as amputees and little people and people
who experience bipolar depression — except that the
world has been designed to exclude and other us. Our
bodies or minds are abnormalized and stigmatized, and
so we must band together [21]. We have been lumped
together by our assumed defects and deficiencies, but
within this category is also power, pride, and resistance.
Disability is a constructed category with great force.
Despite these movements toward identity, power, and
pride, ableism still frames most people’s understanding
of disability and of disabled people. Indeed, most people
don’t even know about these movements. Disability histo-
ry is not taught in most schools. People rarely learn about
landmark acts of civil disobedience and demonstration
from the disability community. For example, the longest
2Important to no te, here, however, that t he social model is not the only
alter native to the medica l model, nor is it the only po ssible alternative. Some
disability s tudies scholars critiq ue the social model a nd offer alt ernatives
that recogniz e elements o f the socia l model al ongside em bodied d isability
experiences like pain and other complexitie s. See [38] or [42], for inst ance.
A person’s relation to the world
and to other people is central to how
disability is constructed.
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43MARCH 2020 ∕ IEEE TECHNOLOGY AND SOCIETY MAGAZINE
sit-in in United States history was 1977’s 504 Sit-Ins in
San Francisco, aimed at pressuring the Department of
Health, Education, and Welfare to enforce Section 504 of
the Rehabilitation Act. (This sit-in was supported, in part,
by the Black Panther Party and is a wonderful example of
multifaceted civil rights activism. See [32, p. 169.] And
during the Capitol Crawl in 1990, before the Americans
with Disabilities Act was passed, demonstrators dropped
their mobility gear, crawling up the Capitol Building steps
to demonstrate the inaccessibility of buildings and institu-
tions to disabled people.
ADAPT, an organization first created to demonstrate
for accessible public transport in the 1970s, has become
increasingly visible in 2017 and 2018, protesting (and
successfully staving off) devastating healthcare reform
that would have dismantled and destabilized programs
important to disability healthcare, such as Medicaid.
ADAPT protestors sat in congressional offices, were
arrested in multiple states, filled congressional hearings,
and even situated themselves outside Representative
Paul Ryan’s church to remind members of the Republi-
can senator’s community who his proposed budget
would hurt.3 Images of blind and paralyzed protesters
being dragged by police splashed the news. The disabili-
ty civil rights movement is not finished, for issues of dis-
ability access have not been resolved.
Still, disabled people are omitted from history, or their
disabilities are downplayed. In the United States, Helen
Keller and Franklin Delano Roosevelt are often the only
disabled historical figures that children learn about. They
learn the “heartwarming” story of how young Helen Keller
was helped by Annie Sullivan to communicate with the
world, freeing Keller from her “prison” of isolation. Educa-
tion about Keller emphasizes the importance of helpers,
rather than Keller’s competence (and that of other dis-
abled people) when given opportunities, education, and
agency. Students do not learn about the adult Keller’s
radical socialist beliefs (which grew out of her lived expe-
rience), her graduation from Radcliffe, and her volumi-
nous correspondence all over the world — and they
almost never learn that Annie Sullivan, the helper in
these narratives, was herself blind, a fact that would trou-
ble the ableist helper/victim dynamic.
Similarly, children learn about FDR, but the fact that he
tried to pass as nondisabled is rarely addressed. As Daniel
J. Wilson [47] puts it, “Roosevelt passed as a man recov-
ered from polio who could walk and stand and was thus fit
to hold high political office. In fact, FDR walked and stood
with great difficulty and spend most of his time in a wheel-
chair or otherwise sitting” [47, p. 13]. There are only a few
pictures of him using a wheelchair, despite his nearly life-
long wheelchair use. The message for his fellow polio sur-
vivors was to pass as best you could, to work as hard as
you could in rehab to recover to the level that FDR appar-
ently had. The narratives about FDR “overcoming” his polio
reinforce the idea that all disabled people ought to pass as
long as possible, especially at work and in school (for
example, many disability communities urge disabled peo-
ple to pass in job interviews if they can).
Aside from Helen Keller and FDR, the history taught in
school rarely discusses the disabilities of other historical
heroes, such as Harriet Tubman, whose disability is rarely
mentioned in narratives about her life. Exceptions are
made for some artists (who perhaps seem to stand out-
side of history); Frida Kahlo’s works force you to confront
disability (although the recent Frida Kahlo Barbie predict-
ably erases her disabilities [22]).
Technoableism
Some disability activism confronts the ableist rhetoric
that grounds many technologies being developed to cure
or fix disability. These movements cannot be dismissed
as simple anti-technology or nouveau-Luddism; they high-
light the ableism in technological conversations, draw
attention to the lack of representation of disabled people
in socio-technical projects, and show developers’ lack of
awareness about the lived experience of disability. In this
section, I describe several disability community reactions
against particular technologies, approaches, and rheto-
rics around cochlear implants, approaches to autism
charity, and exoskeleton devices; I then introduce the
concept of technoableism, a term I have coined to
describe a particular strain of ableism that I have wit-
nessed in the context of imagination, technology, and
bodies. Technoableism is a term I have coined to
describe a rhetoric of disability that at once talks about
empowering disabled people through technologies while
at the same time reinforcing ableist tropes about what
body-minds are good to have and who counts as worthy
[31], [39]–[41].4 Technoableists usually think they have
the good of disabled people in mind. They do not see
how their work reinscribes ableist tropes and ideas on
disabled bodies and minds. As we consider applications
of Artificial Intelligence, it’s important to recognize and
work against ideas that reimpose and reinforce ableist
claptrap under the guise of empowerment.
Cochlear Implant Controversy
One of the most notable recent cases of resistance to
technology aimed at disability is the Deaf community’s
4For work about bias acro ss more types of d ifference in technol ogica l desig n
(not simply d isability- related), Da mien P. Willia ms, blog ging a t A Fut ure
Worth Thinking About, has many good entries, i ncluding work on how
neglect of folks in de sign can be a form of m alice, a nd not merely neglect .
3Nationa l ADAP T is great to follow on T wit ter to fi nd out about t heir act ions
(https://twitter.com/ Nationa lADAPT) or can be kept up with th rough the ir
website (http://adapt.org/categor y/news/).
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44 IEEE TECHNOLOGY AND SOCIETY MAGAZINE ∕ MARCH 2020
reaction to the invention of cochlear ear implants, and par-
ticularly to the recommendation that they should be
implanted in children. The Deaf community’s reaction
reveals both the ableism at the heart of the medical model
of disability (ableism that the Deaf community calls aud-
ism — audism functions like ableism and is a preference
for hearing folks over nonhearing, but not everyone who is
Deaf considers themselves disabled).
The history of cochlear implantation and its impact on
families has been covered in such documentaries as
Sound and Fury (2000), Hear and Now (2007), and
Louder than Words (2015). Historically, children who
received cochlear implants were expected to participate
in the hearing world, and the teaching of American Sign
Language (or other signed language elsewhere) was often
de-emphasized and often discouraged. Many, including
doctors, saw cochlear implants as giving children more
options by normalizing their communication. But those
who take pride in Deaf identity and culture came to see
cochlear implants as an affront to their culture: the
implants were taking potential community members away
before they had a chance to become Deaf.5
Many Deaf people do not consider themselves disabled—
a fact that medical professionals did not anticipate. While
“Professionals in implantation and many in the general
public most likely agree that deafness is a disability and
should be fixed,” Laura Mauldin [28] says, “These accept-
ed norms around treating deaf children and the assump-
tion they should learn to hear and speak are… products
of a larger culture” [28, p. 6]. The Deaf community
asserts Deaf identity as one of linguistic minority, not
impairment [28, p. 7]. This produces tension between
hearing families who “want what’s best for their children”
(who are often unacquainted with Deaf culture) and the
Deaf community, which wants to continue to exist. Many
audiology and hearing professionals did not recognize
this context and did not anticipate how disruptive cochle-
ar implants would be.
I worry here about the ignorance of Deaf culture and
Deaf life displayed by these professionals, who want to
“help” but are not deeply committed to and immersed in
the communities they purport to serve. The development
of “sign language gloves” by people outside the signing
community are a continued example of technological
development that goes wrong in the absence of Deaf com-
munity interest, input, and consultation.6 Given the long
history of audism and eugenics that deaf and Deaf people
have faced (one where deaf people were subject to steril-
ization, sometimes kept from signing, and kept from each
other), this cultural ignorance seems inexcusable. There
are lessons here for designers who anticipate correcting or
curing perceived impairments with AI: the main one is
“know your audience” and also to include your audience
as more than just mere audience or object.7
Autistic Self-Advocacy and Resistance
Other communities besides the Deaf community resist
technologies that offer to “fix” their disabilities and
erase their disabled identities. For example, there has
been a surge of recent activism against Autism
Speaks, a “charity” that has come under fire for ableist
rhetoric and perspectives that exclude actual autistics
and that focus on the insidious and demeaning lan-
guage of “cure.”
Autism Speaks, which was founded in 2005 by
Suzanne and Bob Wright, the grandparents of an autistic
child [3], frames autism as a tragedy, one that desper-
ately needs a cure. One early Autism Speaks ad epit-
omizes this scare rhetoric around “curing” autism. This
infamous “I AM AUTISM” commercial features a gravelly
voice narrating in the voice of autism:
I work faster than pediatric aids, cancer, and dia-
betes combined. And if you’re happily married, I
will make sure that your marriage fails. Your
money will fall into my hands, and I will bankrupt
you for my own self-gain… I will make it virtually
impossible for your family to easily attend a tem-
ple, birthday party, or public park without a strug-
gle, without embarrassment, without pain. You
have no cure for me. Your scientists don’t have
the resources, and I relish their desperation… I
will plot to rob you of your children and your
dreams. I will make sure that every day you wake
up you will cry, wondering who will take care of
5Following the lead of t he Deaf communit y, “Deaf ” is capit alized here when
it refers to t he culture and lowerc ased when i t refers to the inability to hea r
or lower levels of hea ring .
6See Kouznetsova [23] for a go od expla nation of pr oblems with the (multi-
ply-developed) sign l angua ge gloves th at make news ever y few years.
7Liz Jack son’s work on De sign WI TH Disabilit y [20] is impor tant here. There
are also other models of emancipator y research (as opp osed to participa-
tory re search), such as [52].
As we consider applications of
Artificial Intelligence, it’s important
to recognize and work against
ideas that reimpose and reinforce
uninformed prejudice under the
guise of empowerment.
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45MARCH 2020 ∕ IEEE TECHNOLOGY AND SOCIETY MAGAZINE
my child after I die? And the truth is, I am still win-
ning, and you are scared. And you should be ([2],
as transcribed by [4]).
This commercial, which compares autism to AIDS,
cancer, and diabetes, feeds on the worries of parents
and loved ones by making autism seem like an awful fate
rather than a neurological difference. This message may
be especially frightening to viewers unacquainted with
autistic adults or community. This “cure” rhetoric pres-
ents a problem for autistics who see their autism as an
important part of who they are, and who do not wish to
be non-autistic [51]. Add to that the fact that Autism
Speaks had no autistic members on their board for a
very long time, adding autistic members only after great
public pressure and scrutiny from autistic adults, and we
see a situation like that of the Deaf community respond-
ing to cochlear implants: the actual people who are the
object of a charity’s focus are alienated, othered, and
misunderstood by that so-called charity.
The Autistic Self-Advocacy Network, a group run for
and by autistic people, provides resources to help mem-
bers explain the harmfulness of Autism Speaks [6]. ASAN
has collaborated with a long list of other disability rights
groups, including the National Council on Independent
Living, Not Dead Yet, Little People of America, and Down
Syndrome Uprising to issue a joint statement against the
practices and rhetoric of Autism Speaks [5]. Many oppo-
nents of Autism Speaks point out funding allocation in
the organization as evidence for their ableism. One self-
advocate associated with ASAN writes:
… the majority [of their funding] goes towards cau-
sation and prevention. As a lot of that research is
genetic in nature, prevention means research into
selective abortion of fetuses with markers for
autism. Not only does this not help autistics of any
age, it encourages the idea that it’s better to not
exist than to RISK being disabled (and in particular,
autistic)…. [37].
This is eugenics aimed at eliminating people who
would otherwise be part of the autistic community, and
Autism Speak’s focus on genetic research and autism
prevention weigh heavily on advocates.
Autism Speaks is a very large autism charity; both its
focus and its familiar branding — the blue lights, the ico-
nography of the missing puzzle piece — set norms for
other autism charities. Therefore, activists’ worries
about Autism Speaks also carry over to other organiza-
tions that investigate autism and its causes. Autistic peo-
ple are now speaking up against technologies of cure
before they are made, as autistic self-advocates assert
the value of their lives — and of the lives of disabled
people more broadly.8 The history (and present) of
eugenics haunts the rhetoric of those who seek to cure
or fix disabilities of all kinds.
Reactions to Exoskeletons
The much-hyped exoskeletons — technological mobility
“suits” designed to enable users with particular types of
mobility impairments to independently do certain types
of physical tasks — have also been an object of critique
for those in disability communities. When a person using
an exoskeleton kicked off the first ball for the World Cup
in 2014, many nondisabled commentators were thrilled.
However, many disabled people were less excited. New
Mobility, a magazine for active wheelchair users, did a
roundup of quotes from the blogs of wheelchair users.
User Red Nicholson was quoted as saying, “So hey, able-
bodied media: quit making me feel like wheelchairs are a
shitty, sub-par option.” And Shane Clifton wrote, “If sci-
ence wants to help me out, it should concentrate its
research on the bladder and bowel, and do something
about nerve pain and spasm” [9].
Disability Studies scholar Bill Peace has written about
the problem of exoskeletons and the meaning and
importance of wheelchairs:
Typical news stories consider the exoskeleton a
“miracle” that enables paralyzed people to walk
again. References to Iron Man abound as do com-
parisons to being “wheelchair bound” versus being
a “super hero.” The message is not subtle: walking
is the best means of locomotion. Using a wheel-
chair is inherently bad. A wheelchair is an antiquat-
ed piece of technology and the exoskeleton is here
to rescue paralyzed people who are “bound” to
their wheelchair [33].
These disabled people’s reactions to the exoskeleton
technology often shock students in a class I teach on
Technology and Disability. Given the media sensation
that exoskeletons have created (from the World Cup
stunt to multiple TED talks and news articles about their
potential for helping paralyzed people), nondisabled peo-
ple often have not reflected on how these devices are sit-
uated and understood and about the ableist worldview
that drove the technology’s development.
The full story of exoskeletons has yet to be written, but
the existing narratives around paralysis (framed as an
awful fate) and walking (assumed to be the best way of
8An interestin g facet of how autistic self-advocacy has developed is that
unlike i n the Deaf community, autist ic advocates and ac tivists aren’t push-
ing aga inst the label of di sabled. They promote a social model in which
people acc ept that they are bot h disabled and a part of nor mal dis tribu -
tion of huma n variation. The neurodiversity pa radigm and movement has
helped contextualize the d iversity of neurolo gies as a s imple obser vation
about human var iation, rather tha n a patholo gica l condition.
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46 IEEE TECHNOLOGY AND SOCIETY MAGAZINE ∕ MARCH 2020
moving through the world) almost seem designed to end
with exoskeletons as a solution to the “problem” of mobil-
ity impairment — a technoableist’s dream solution. Yet
exoskeletons aren’t the cure-all imagined by the news sto-
ries in which they are featured [13], [26]. And actual
wheelchair users — the people for whom the devices
were ostensibly developed — point out that nondisabled
people are often mistaken about what is bad about being
a wheelchair user. Wheelchairs themselves are not the
problem; as Peace put it, “From my perspective, I think a
wheelchair is a phenomenal invention” [33].
The real problem with wheelchairs is accessibility, both
environmental and economic. Many places remain inac-
cessible for wheelchair users (despite legal accessibility
requirements, which are poorly or simply not enforced),
and wheelchairs are economically inaccessible to many
(good wheelchairs are costly and difficult to repair — and
just imagine how much worse exoskeletons will be to
maintain and repair!9). The fanfare over exoskeletons puts
the focus on mobility devices rather than other problems
faced by paralyzed people. Rather than spending money
developing alternatives to wheelchair technology, which
works very well, other effects of paralysis should be exam-
ined by scientists and technologists, as the blogger Shane
Clifton (quoted above) pointed out [9]; why can’t a tech
designer create a workable device to help with bowel and
bladder control or nerve pain? These are a much bigger
problem for many wheelchair users than the chair itself.
Disability studies scholar Kim Sauder identifies the
key reasons why the fanfare around standing wheelchairs
and exoskeletons is problematic for those in the disabili-
ty community. First, Sauder says, “able-bodied people
ignore the cost of these devices,” which would usually
“be shouldered by the disabled user.” Second, Sauder
points out, many of the exoskeletons are very limited; for
example, she says, the Tek exoskeleton “is only useful
indoors so an alternate mobility device is required out-
doors.” And exoskeletons will do nothing to increase
accessibility for non-wheelchair users who have other
mobility impairments. These people “may also need
additional space to maneuver or ramps,” and exoskele-
tons do nothing to make the broader environment acces-
sible to everyone. Third, the fact that exoskeletons
ignore the possibility of “making the actual social envi-
ronment more mobility friendly” instead puts the prob-
lem back on the individual disabled person, reinforcing
the ableist medical model of disability: “It positions the
disabled body as social space where others can enact
changes to mobility,” which “ignores both the autonomy
of disabled people and the fact that many of us don’t
want to be ‘fixed’ either by cure or imposed treatment.”
Finally, Sauder notes that the entire concept of exoskele-
tons “associate[s] an accessible environment to disability
(therefor [sic] rendering it ‘other’ and undesirable)” [36].
Exoskeletons only look like a solution when wheelchair
use and paralysis are couched as individual problems, rath-
er than problems of our infrastructure — of who we include
in our visions of the environments of the future. This exo-
skeleton narrative ignores the fact that many wheelchair
users are not paralyzed. Even if this technology were afford-
able (it probably won’t be), it still would do nothing for the
real problem as nondisabled people see it: the fact that
people use wheelchairs. The huge number of non-para-
lyzed wheelchair users would still be around, asking for
more curb cuts and door openers, reminding nondisabled
people that people with disabilities exist. And the hype
about exoskeletons as solving the “problem” of paralysis is
completely misplaced — the way that the technology has
been marketed, promoted, and hyped is more a reflection
of ableism than of the devices’ real value, which is for non-
paralyzed people. Exoskeletons could be remarkably useful
as safety devices (they are currently being tested for work-
ers in home improvement stores, who have to lift heavy
things), and people report that the devices can be success-
fully used in physical therapy rehabilitation for people who
have had strokes, supporting them as they practice differ-
ent movements to regain strength and balance. But these
uses for exoskeletons — as support devices for older peo-
ple doing post-stroke rehab or as expensive lifting belts for
workers at your local Home Depot — are much less techno-
redemptive, for these workaday uses for exoskeletons don’t
fit into our (ableist) visions of a techno-utopian future.
Technoableist Dreams of Cure and Passing
Disability and technology must be situated within the
social, historical, and cultural stories we internalize, which
usually show that disabled technology users are empow-
ered, liberated, or normalized by technology. This is the
rhetoric that is embodied in the controversies over cochle-
ar implants, autism charity work, and exoskeletons — case
studies that make clear how supposedly well-meaning peo-
ple can make mistakes in imagining the needs and desires
of the communities they purport to serve.
Even members of those communities, though, can
get it wrong. Ableism is a system of value that all of us
participate in, including individual disabled people. And
internalized ableism might be even more common
among disabled people who (like me) are not born with
disabilities, but become disabled during the course of
their lives. Disability is a category that can come to apply
to anyone, and people who are already disabled might
enter new categories of disability at any time.10 Systemic
10Here I think of my amput ee pal Ma llor y Kay Nelson who, upon recounting to
me how she beca me an amputee, added “of course I’ve always been dy slexic,
so I have been a pa rt of the d isabi lity communit y for much longer” [30].
9Joshua Ea rle has so me forthcoming work on “Cyborg Maintena nce” tha t
talk s about this exac t problem with curr ent technologies.
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47MARCH 2020 ∕ IEEE TECHNOLOGY AND SOCIETY MAGAZINE
forces and cultural narratives about what constitutes a
good life often limit the ways that disability can be imag-
ined, none particularly desirable. Dreams of passing, of
“normalcy,” and ideas about inspiration and overcoming,
frame many of the disability community’s internal con-
versations about disability technologies.
These internal divisions are apparent in the conversa-
tions being had about genetic testing for disabilities and
the new technologies that make it possible to edit genes —
to “fix” or “cure” genes with “problems” before a baby is
ever born. David Perry and Alice Wong have written [34],
[50] and spoken about the moral challenges posed by
these new CRISPR gene editing technologies. David Perry
made his position clear with the title of his article, “We’re
Failing Our Test Run for the Age of CRISPR,” which was
widely shared within disability groups:
I’ve contended that the past decades of testing,
genetic consultation, and decision-making about
abortion related to prenatal diagnoses of Down syn-
drome have served as a kind of test run for the
future of human procreation. Can we make
informed choices? Can we understand that probabil-
ity doesn’t equate to outcome when we’re talking
genetic makeup? Can we use science to build a
more just, happier humanity? [34].
Perry concludes that the answer is no. Not only are we
not making communities that are happier or more just,
we can’t even build communities that can see that dis-
abled lives can be worth living. The value of disabled
lives, and the sheer joy of living (which is experienced in
whatever body you have), are expressed by Alice Wong,
co-founder of the Disability Visibility Project, in a talk at
Stanford’s MedX Conference:
Because of my apparent physical disabilities, many
people, both strangers and acquaintances, pre-
sume that my life is one that’s difficult and full of
suffering. I am totally dependent on personal assis-
tance for my daily activities and cannot breathe
without ventilatory support. For some people, this
is an undignified, unimaginable, and pitiful way of
living. Some of these people would rather be dead
than be in my position based on perceived loss of
control, weakness, and fragility. And that’s ableism.
Yes, I experience pain and suffering but that
doesn’t mean my life isn’t rich and full. Yes, I need
a lot of help, but that doesn’t mean I can’t make
decisions for myself on how I want to live [50].
Although the history of disabled people is one full of
eugenicism, institutionalization, and active discrimina-
tion, and although many disabled people still face
limitations on their employment options (through shel-
tered workshops and employment discrimination) and
many cultural biases, people with disabilities need not
believe in the cultural narrative that disabled people’s
lives will be tragic, difficult, or otherwise poor. Many of us
enjoy our lives, and the technologies that support us.
Many wheelchair users write of the joy of their machines;
I love both my prosthetic leg and my shiny, blue wheeled
walker. Alice Wong writes: “Technology has made a huge
difference in my life. Power wheelchairs, Bi-Pap machines,
the Internet have made my life what it is today” [50]. Dis-
abled people aren’t nouveau-Luddites, but technologists
often stereotype us this way. Instead of imagining the
desires of disabled people (through the lens of ableism
that we have all internalized to some degree), why don’t
technologists simply ask disabled people what kinds of
technological applications we want and need?
Listening to disabled people produces better technol-
ogies and design of resources and infrastructure for
everyone. When people design for disabled people—
when they design technologies to work for people whose
bodies and minds run a wide gamut — the designs are
better, and more people (including nondisabled people)
like and adopt them. As one disabled designer, J.H.
Adamé, puts it:
It’s this ableist thinking (if the problem doesn’t
apply to me, it must not exist) that has limited
development in these fields for so long. If we allow
the voices of our most challenged users to be
heard, solving a huge problem for some can mean
solving an inconvenience for everyone else. Inevi-
tably, inclusive design benefits all of us. When we
factor in the people at the extreme ends of use,
we end up making something that is easier for the
folks in the middle as well [1].
Building things for disabled people often means build-
ing better things for all people — a principle that also
applies to the built environment. An environment that is
accessible to the “extreme ends of use” is a world that is
more easily navigable and more comfortable for every-
one — including nondisabled people, such as parents
with children in strollers, athletes with broken arms, the
temporarily injured, and so many more.11
Articial Intelligence
The latest set of technological solutions to the perceived
problems of disabled people is Artificial Intelligence and
machine learning. But like other technologies discussed
11There is a la rge bod y of litera ture on the benefit s of Univers al Desi gn (an
approach t hat considers desi gn for a wider r ange of bodies and minds) —
though, one should note, d isabled people shou ld not be valued only bec ause
their inclusion produces better products for everyone.
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48 IEEE TECHNOLOGY AND SOCIETY MAGAZINE ∕ MARCH 2020
in this essay, Artificial Intelligence research and AIs cur-
rently under development contain several inscriptions of
technoableism that I want to warn against. I also want to
gesture to an emerging frame for considering appropriate
disability technology, called Crip Technoscience [16].
The current mood is one of optimism about machine
learning and Artificial Intelligence for disability applica-
tions. Headlines scream about it: “How AI Could Trans-
form the Lives of Disabled People” [10], “How Artificial
Intelligence Can Help With Disabilities” [19], and “Artificial
Intelligence Poised to Improve Lives of People with Dis-
abilities” [46]. Sometimes these headlines acknowledge
AI’s potential for helping people as they age (correctly
assuming that older folks are more likely to have disabili-
ties), hyping the potential for robot caregivers and AI
emotional support “animals” — AI that can take the place
of human carers or friends, often at a lower financial
cost: “Artificial Intelligence Could Improve How We Age”
[29], “Can China Win the Artificial Intelligence Race by
Serving the Elderly?” [18], and “Robot Caregivers are Sav-
ing the Elderly from Lives of Loneliness” [43].
These breathless headlines make clear the assumptions
that ground the articles that follow them — assumptions
about what it is to be disabled and what it is to age. (These
articles tend to lump disability and aging together, and I
therefore examine the two together, but there are important
differences between these demographic groups in terms of
stigma, access, convenience, societal narrative, and consid-
eration.) Like earlier technological interventions on disabled
lives, these technologies rely on assumptions about the dis-
abled and aging individual rather than the environment. For
example, ideas about the importance of independence fac-
tor heavily into coverage of AI for disabled and older folks,
and are particularly clear in discussions around autono-
mous vehicles, companion robots (like Paro), home-based
applications (like Alexa), and caretaking robots. All of these
technologies emphasize aging and disability as problems for
individual consumers, rather than problems for society.12
Why should the lack of accessible transport for people who
cannot drive be a problem for the non-driver rather than for
society? Why should the loneliness and isolation experi-
enced by people who cannot easily leave their homes be
solved by in-home robots rather than by better planning and
infrastructure within our communities?
AI designers are clearly focused on changing the indi-
vidual to fit the environment rather than the other way
around. For example, many of the “conveniences” offered
by AI applications are mostly conveniences for the benefit
of the user’s family, rather than the users themselves.
These technologies are framed as unburdening families
from worry by enabling them to remotely monitor or
check in on their loved one’s condition; as reducing the
financial costs of hiring human caretakers; and as com-
bating the user’s isolation and loneliness, thus requiring
fewer visits from family members. When AI technology is
framed as helping the family, it positions disabled and old
people as recipients of care rather than as agents in their
own lives, and it decenters them and their experiences,
instead moving the nondisabled family members into the
center of the story (which also fails to recognize that dis-
abled people can have disabled family members and can
be caregivers themselves).
This same centering of ability is produced by the narra-
tives’ focus on independence as the main goal of disability
design. Indeed, the nearly obsessive focus on indepen-
dence is another “tell” for ableism. As Elliott Kukla writes:
We are born needing care and die needing care, and
I am no exception. At brief moments in the middle
of life, we hold the illusion of independence, but we
are always driving on roads we did not build, eating
foods we did not pick or raise. Allowing the illusion
of my own independence to drop away unmasked a
fundamental truth of being human [24].
This sentiment echoes throughout current disability
studies: we are all interdependent, and independence has
always already been an illusion.13 But disabled and old peo-
ple have often needed to advocate for independence,
because they have historically been the subject of laws, de
facto rules, and public norms that deny them full citizen-
ship, access, and opportunity to participate in public life.
For example, early disability activism of the 1970s and
1980s produced a movement called the independent living
movement. The name — independent living — indicates a
reaction to the historical framing of disabled people as
completely dependent, as objects to be moved around by
nondisabled people. Despite the name, this movement was
not about independence in the sense of isolation, total
responsibility for one’s own needs, and total avoidance of
inconvenience to nondisabled people — the values that
underpin current narratives about AI. Instead, the move-
ment was about the right to a public life, a life outside of
institutions — an interdependent life. It demanded commu-
nity living (the slogan “Our Homes, Not Nursing Homes!”),
13There is a go od discu ssion of th is in Sunaura Taylor’s Beasts of Burden
[44] and Lea h Lak shmi Piepzna- Sama rasinha’s Care Work [3 5].
12This is no t unique to AI, of course. There are many existi ng technolo-
gies and g adgets that were or igina lly designed to increase t he indepen-
dence of dis abled and/or aging users and t hat contr ibute to e ase of
independent living for all people: kitchen gadget s that ar thr itic hand s can
hold (the OXO line is de signed on this premise), hot water heaters that
don’t require the li fting of a heavy tea kettle [11], grabbers and reachers,
pre-cut and pre -peeled f ruit s and vegetables, medical alert s, handrails a nd
ramps, mobility devices, a nd acces sible bathrooms. A ll of the se technolo-
gies were de signed t o increa se disa bled people’s independence, and they
all al so enable a ging in place wit h more independence. Li z Jackson’s New
York Time s article “We Are T he Orig inal Lifehackers ” is a must-read on
this topic: https://www.nytimes.com/2018/05/30/opinion/disability-design
-lifehacks.html [20].
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49MARCH 2020 ∕ IEEE TECHNOLOGY AND SOCIETY MAGAZINE
access to education and to public spaces (schools, grocery
stores, shops, etc.), vocational services (to enable people
to work), and assistive technologies (to help people move
and remain outside of institutionalized and segregated
care). The independent living movement demanded only
that disabled people have the same autonomy, rights, and
freedoms that nondisabled people enjoy.
Interdependence (neither isolationist independence
nor dependence) is a central value in the Crip Technosci-
ence Manifesto. It is the second item on the list: “Crip
technoscience is committed to interdependence as a
political technology” [17, p. 12], and the Manifesto itself,
which is “premised on interdependence,” was written to
describe the “core values” of crip technoscience. Accord-
ing to Hamraie and Fritsch [16, 17], crip technoscience
blends critical disability studies with approaches from the
field of Science and Technology Studies (STS). It antici-
pates a world in which disabled people are seen as
experts about their experiences and the materiality and
context of their bodies. Crip technoscience anticipates
accessible futures that work not toward cure or normal-
ization but toward freedom.
AI as a disability technology also presents particular
problems of data privacy, especially given the long and
ongoing history of the policing of disabled bodies. For
example, the recently deployed Electronic Visit Verifica-
tion (EVV) technologies enable personal care atten-
dants (PCAs) to clock in and out of their home health
visits. Under EVV, these personal care attendants, who
provide physical support for disabled people to accom-
plish daily tasks (toileting, prepping food, getting in a
wheelchair), are issued mobile phones to track their
time on the job. But disability activists express worry
about the scope of the monitoring enabled by this
technology. As disability activist and filmmaker Domi-
nick Evans tweeted:
It is a pure violation of the civil liberties and per-
sonal freedom of disabled people across the Unit-
ed States.
Our PCAs are now being equipped with some-
thing equivalent to an ankle bracelet by the US gov-
ernment!
They are giving [sic] phones that have cameras
in the front and the back so they can track exactly
what all of us who need homecare are doing. They
could record any conversation.
These devices have to stay in our homes, at
all times. We’ll never know when they are record-
ing, and we don’t know who has access to them
beyond the monitoring company, and govern-
ment agencies.
It’s a huge threat to the personal safety of dis-
abled people who require home care [12].
The use of EVV technology is a huge invasion of priva-
cy — an invasion that would not be permitted for many
segments of society.14 Can you imagine if any nondis-
abled, noncriminal citizen was required by the govern-
ment to allow a device with the potential to monitor
them in their homes at all times? This is precisely what
some of the proposed AI technologies will do. And dis-
abled people — especially disabled people who are multi-
ply minoritized, whose identities are more carefully
scrutinized by others — are rightfully concerned. Our soci-
ety does not value the privacy of older people and dis-
abled people,15 and many of the AIs in development
sacrifice this privacy in favor of the peace of mind of pre-
sumably nondisabled caretakers — an assumption that
disabled and old people are not agents in their own right.
Experiences of Real Disabled People
The crux of the problem is that AI designs, like other
technologies meant to address disability issues, are
often spearheaded by people not deeply embedded in
the disability community —people who simply imagine
what it might be like to be disabled or elderly rather
than base their design on the experiences and needs of
real disabled people. These designers, who are usually
ignorant of the larger history of disability, often rein-
scribe ableism in their designs, further stigmatizing and
marginalizing disabled people through monitoring or
tracking or decision-making by proxy. The typical fram-
ing of new technologies as promoting independence is
based on a lie: the lie that any of us is truly indepen-
dent. These technologies are touted as empowering, but
designing technologies without consulting their user
base is the ultimate in disempowerment.
One of the commitments of the Crip Technoscience
Manifesto is to center “the work of disabled makers and
knowers” [17, p. 7]. Tech designers’ reliance on their imag-
ination of what it is to be disabled16 keeps the focus on
individual functioning and limitation, rather than address-
ing the larger context — the poor infrastructure and social
stigmas that work against the full participation of disabled
people in society. This is not an either/or situation: we can
both work to support individuals’ particular interests and
needs and work to create a more accessible world for all
14D.E. Witt kower has done some wonderful work on how to re frame pr ivacy agree-
ments and l icense s for software in a way that foste rs tru st, especially i n reference
to how to deploy technolog ies like R IBA (mea nt to help li ft and toilet people),
Alexa a nd Google Home (developed not w ith disabili ty in mind, but being adopted
fruit fully by s ome disa bled user g roups), PARO (the interact ive seal mea nt to help
dementia patients), and Nest (a smart home technolog y). See [48], [49].
15Given the rise of the num ber of viral vide os and pictures of good-n ice-
nondisa bled people he lping unnamed disabled people at some t ask - wit h
praise for that sa int of a nondi sabled person — tha t come through my
social media each we ek, the causal bel ief and message that disa bled
people don’t de serve pr ivacy is quite clear.
16A technolo gized version of th is kind of imagi ning (in stead of a skin g) is
designe rs’ par ticipation in disabil ity simu lation; s ee [13] for discussion of
this in relation to v irt ual rea lity.
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50 IEEE TECHNOLOGY AND SOCIETY MAGAZINE ∕ MARCH 2020
people. But we cannot do either if we continue to design
technologies that reinscribe the “cure” or normalization of
individual disabled bodies and minds instead of making
worlds more conducive to our existence.
Acknowledgment
The author thanks Hanna Herdegen and Heath Sledge
for their editorial comments on various drafts of this
paper. The thoughts presented here have benefited
from conversations with many people, including Josh-
ua Earle, Damien P. Williams, Hanna Herdegen, Mallory
Kay Nelson, D.E. Wittkower, and many students who
have taken my Technology & Disability course.
This material is based upon work supported by the
National Science Foundation under Award Number
1750260. Any opinions, findings, and conclusions or rec-
ommendations expressed in this material are those of
the author and do not necessarily reflect the views of the
National Science Foundation.
Author Information
Ashley Shew
is Assistant Professor, Science, Technology,
and Society, at Virginia Tech, Blacksburg, VA. Email:
shew@vt.edu.
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professor at the Celso Suckow da Fonseca Federal Cen-
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