Autism Speaks and Disability Hacktivism

Last month, the advocacy organization, Autism Speaks (AS), celebrated its tenth birthday. To commemorate their decade-long milestone, the organization encouraged social media users on Twitter and Facebook to join in celebrating the anniversary by sharing personal stories about how autism had touched their lives. What resulted from this call to share and participate in the AS online community was a backlash from individuals on the autism spectrum. Leading the way in this digital activism against AS is Dr. Melanie Yergeau, Assistant Professor of English at the University of Michigan. Yergeau came up with a hashtag to counter the prescribed and celebratory “#AutismSpeaks10.” Her hashtag was “#ActuallyAutistic.” The fact that so many individuals who are actually autistic came together to pitch their collective voice online must mean that AS is not as altruistic as they would like you to believe.

On Monday, March 16th, Dr. Yergeau visited our classroom via a Skype session to discuss the digital protest over last month’s AS event, as well as some of her own research relating to the idea of Disability Hacktivism. As far as AS is concerned, we learned some rather unsavory facts about the organization from Ms. Yergeau. For instance, she told us that the organization spends more money on their own catering than on education or awareness programs. Other questionable facts include the organization having defended parents who have admittedly wanted to see their autistic child dead; a perfectly “normal” response as far as AS is concerned. Furthermore, instead of allocating resources to find ways to meaningfully integrate autistic individuals into society, the organization spends its time funding scientific research, marketing, and films such as Autism Every Day. One of the founders of AS, Suzanne Wright, even declared that autism is a “monumental health crisis.” Yergeau commented on Monday that these and other pronouncements made by the organization amount to rhetorical genocide. Indeed, such rhetorical displays are imminently harmful to the autistic community. For those with autism, the disorder is indeed present “every day.” But instead of being some kind of monster with detestable motives (like the lurking voice in the 2009 AS commercial), autism is fundamental to the identities of autistic persons. If they could, AS would eradicate this identity, which is why the organization spends the majority of its money on scientific research; relegating the autistic to the sterile margins of labs and medical journals.

Such is the discrimination against people with disorders and disabilities. Even in the way society addresses its concern for autism is inherently damning to the autistic individual. That is why Yergeau notes that we have poster children and celebrity spokespersons. We are supposed to see celebrities – successful, sexy, smart – as models for ideal living. The disabled person supposedly cannot enjoy life to this ideal degree, and so we must donate our sympathy and a small fraction of our income to produce succor for the helpless. Yergeau’s essay on Digital Hacktivism starts out in a similarly sarcastic way. For instance, many disability charities throughout the years, as Yergeau explains, have operated under the implicit assumption of doing good for individuals who supposedly can’t do good for themselves: Yergeau writes, “… the telethon is a rhetoric of charity and exclusion and infantilization. The rhetoric of the telethon denies the humanity and agency of disabled people, all the while reifying the prowess and kindliness of the presumably able-bodied.” In other words, people in groups like AS are casting themselves as society’s altruistic heroes, fighting to eradicate a disorder or come up with a felicitous breakthrough without ever having to come into contact with a disabled person.

Yergeau also writes about the disability hackathon. I am not familiar with the hackathon, but I understand it is a public event in computer programming circles where individuals create simulations, video games, or applications for an intended audience. When disabilities are taken as source material for these hackathons, the result is supposed to be a technology that can potentially make life easier (quote, unquote) for the disabled person. Yergeau gives examples of several of these disability hackathons which, tellingly, did not include the input of individuals who were disabled. Why would these hackers not consult individuals who were meant to ultimately benefit from their novel designs? No doubt, they were excluded for reasons similar in explanation to why AS has barely any autistic individuals represented in their organization. Indeed, disabled persons are seen as unable to provide constructive input. Like any management or design team, work operates on time-lines and verbal consensus. Decisions are made by “industrious” people who can “get things done.” And these people who can “get things done” have plenty of credentials in the form of Ivy League degrees, memberships in clubs and societies, etc. On the other hand, the disabled person is seen as so much impedimenta; too slow to get things done, and too mentally incompetent to provide useful commentary in an area which doesn’t concern them: computer programming, executive decisions, government policy. But, as we all know, these areas do in fact concern disabled individuals. Greatly.

Any disability advocacy or awareness group, whether it’s for autism or something else, needs active and equal representation and participation. Disability hactivism aims at establishing equality in hacking. And not just in the hackathons of University computer departments but all areas of life and society of concern to the disabled individual. Disability hacktivism is an idealogical framework meant to be inclusive, valuing diversity of experience. We can’t reasonably expect that a celebrity spokesperson has all the information we need to spread awareness or effect positive change. To avoid discrimination and harmful rhetorical practice is to invite the participation and perspective of persons affected by a disorder or disability.


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