IEEE Technology and Society Magazine - March 2020 - 49

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 Technoscience 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. According to Hamraie and Fritsch [16, 17], crip technoscience
blends critical disability studies with approaches from the
field of Science and Technology Studies (STS). It anticipates 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 normalization 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 Verification (EVV) technologies enable personal care attendants (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 accomplish 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 Dominick Evans tweeted:
It is a pure violation of the civil liberties and personal freedom of disabled people across the United States.
Our PCAs are now being equipped with something equivalent to an ankle bracelet by the US government!
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 recording, and we don't know who has access to them
beyond the monitoring company, and government agencies.
It's a huge threat to the personal safety of disabled people who require home care [12].
MARCH 2020

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The use of EVV technology is a huge invasion of privacy - an invasion that would not be permitted for many
segments of society.14 Can you imagine if any nondisabled, noncriminal citizen was required by the government 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 disabled people - especially disabled people who are multiply minoritized, whose identities are more carefully
scrutinized by others - are rightfully concerned. Our society does not value the privacy of older people and disabled people,15 and many of the AIs in development
sacrifice this privacy in favor of the peace of mind of presumably 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 reinscribe ableism in their designs, further stigmatizing and
marginalizing disabled people through monitoring or
tracking or decision-making by proxy. The typical framing of new technologies as promoting independence is
based on a lie: the lie that any of us is truly independent. 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 imagination of what it is to be disabled16 keeps the focus on
individual functioning and limitation, rather than addressing 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
14

D.E. Wittkower has done some wonderful work on how to reframe privacy agreements and licenses for software in a way that fosters trust, especially in reference
to how to deploy technologies like RIBA (meant to help lift and toilet people),
Alexa and Google Home (developed not with disability in mind, but being adopted
fruitfully by some disabled user groups), PARO (the interactive seal meant to help
dementia patients), and Nest (a smart home technology). See [48], [49].
15
Given the rise of the number of viral videos and pictures of good-nicenondisabled people helping unnamed disabled people at some task - with
praise for that saint of a nondisabled person - that come through my
social media each week, the causal belief and message that disabled
people don't deserve privacy is quite clear.
16
A technologized version of this kind of imagining (instead of asking) is
designers' participation in disability simulation; see [13] for discussion of
this in relation to virtual reality.

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IEEE Technology and Society Magazine - March 2020

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