IEEE Technology and Society Magazine - March 2020 - 45

my child after I die? And the truth is, I am still winning, 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 presents 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 responding 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 members 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 opponents of Autism Speaks point out funding allocation in
the organization as evidence for their ableism. One selfadvocate associated with ASAN writes:
... the majority [of their funding] goes towards causation 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 iconography of the missing puzzle piece - set norms for
other autism charities. Therefore, activists' worries
about Autism Speaks also carry over to other organizations that investigate autism and its causes. Autistic people 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
MARCH 2020

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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, ablebodied media: quit making me feel like wheelchairs are a
shitty, sub-par option." And Shane Clifton wrote, "If science 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 comparisons to being "wheelchair bound" versus being
a "super hero." The message is not subtle: walking
is the best means of locomotion. Using a wheelchair is inherently bad. A wheelchair is an antiquated 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 people often have not reflected on how these devices are situated 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
8

An interesting facet of how autistic self-advocacy has developed is that
unlike in the Deaf community, autistic advocates and activists aren't pushing against the label of disabled. They promote a social model in which
people accept that they are both disabled and a part of normal distribution of human variation. The neurodiversity paradigm and movement has
helped contextualize the diversity of neurologies as a simple observation
about human variation, rather than a pathological condition.

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IEEE Technology and Society Magazine - March 2020

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