IEEE Technology and Society Magazine - March 2020 - 47

forces and cultural narratives about what constitutes a
good life often limit the ways that disability can be imagined, none particularly desirable. Dreams of passing, of
"normalcy," and ideas about inspiration and overcoming,
frame many of the disability community's internal conversations about disability technologies.
These internal divisions are apparent in the conversations 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 syndrome have served as a kind of test run for the
future of human procreation. Can we make
informed choices? Can we understand that probability doesn't equate to outcome when we're talking
genetic makeup? Can we use science to build a
more just, happier humanity? [34].

limitations on their employment options (through sheltered 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]. Disabled 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 technologies 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. Inevitably, 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].

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 disabled 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, presume that my life is one that's difficult and full of
suffering. I am totally dependent on personal assistance 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 discrimination, and although many disabled people still face
MARCH 2020

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Building things for disabled people often means building 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 everyone - including nondisabled people, such as parents
with children in strollers, athletes with broken arms, the
temporarily injured, and so many more.11

Artificial 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
11

There is a large body of literature on the benefits of Universal Design (an
approach that considers design for a wider range of bodies and minds) -
though, one should note, disabled people should not be valued only because
their inclusion produces better products for everyone.

IEEE TECHNOLOGY AND SOCIETY MAGAZINE

IEEE Technology and Society Magazine - March 2020

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