IEEE Technology and Society Magazine - March 2020 - 44

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.

reaction to the invention of cochlear ear implants, and particularly 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 audism - 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 accepted norms around treating deaf children and the assumption 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

5
Following the lead of the Deaf community, "Deaf" is capitalized here when
it refers to the culture and lowercased when it refers to the inability to hear
or lower levels of hearing.

this context and did not anticipate how disruptive cochlear 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 community 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 sterilization, 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 language 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 desperately needs a cure. One early Autism Speaks ad epitomizes 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 diabetes 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 temple, birthday party, or public park without a struggle, 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
6
See Kouznetsova [23] for a good explanation of problems with the (multiply-developed) sign language gloves that make news every few years.
7
Liz Jackson's work on Design WITH Disability [20] is important here. There
are also other models of emancipatory research (as opposed to participatory research), such as [52].

IEEE TECHNOLOGY AND SOCIETY MAGAZINE

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MARCH 2020

IEEE Technology and Society Magazine - March 2020

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