By Isabella Rosario
Last week, actor William Shatner tweeted “#NewProfilePic #lightitupblue #WorldAutismAwarenessDay” along with a chalk-drawn picture of a puzzle piece in a light bulb. The “Star Trek” icon’s tweet was met with immense backlash because the picture and “#lightitupblue” hashtag are trademarks associated with the group Autism Speaks, a self-proclaimed autism-advocacy organization that has faced major controversy since its conception in 2005 — and for good reason.
Bob and Suzanne Wright founded the organization after their grandson was diagnosed with autism. Despite its status as the leading organization in autism research and awareness, many autistic people claim Autism Speaks does not speak for them, citing its repeated dehumanization and demonization of their condition.
Autism Speaks’ controversial 2009 ad “I Am Autism” is a three-minute testament to the group’s deeply flawed “activism,” depicting autism as a harrowing monster that attempts to ruin the lives of all whom it affects: “I know where you live … I hover around all of you … I work faster than pediatric AIDS, cancer, and diabetes combined … you are scared, and you should be.” “Autism Every Day,” a documentary produced by the organization, focuses on the struggles of the parents of autistic children rather than speaking to autistic people, describing the spectrum disorder as “heartbreaking” and a “battle,” only finding hope in the idea that scientists will someday find a “cure.”
But many autistic people don’t want a cure. They reject Autism Speaks cofounder Bob Wright’s belief that “We have an epidemic on our hands.” They don’t view their condition as some debilitating disease but rather as an integral part of their identity. The Autism Self-Advocacy Network, an organization run by and for autistic people, calls April “Autism Acceptance Month” rather than “Autism Awareness Month.” This focus on acceptance emphasizes “working to make our world a better, more inclusive, safer place for autistic people of all ages and abilities” — without changing who they are. In contrast, most of Autism Speaks’ medical-research funds are put toward causation and “prevention,”. For example, parental testing or eugenics. The organization would rather focus on eradicating autistic people and their unique qualities from the world than fund services that actually help them and their families — a meager 4 percent of its budget.
I don’t claim to know what it’s like to have autism or live with someone who does. As a differently able-bodied person, I recognize my knowledge on these issues is inevitably skin-deep. I acknowledge that autism, especially on the severe end of the spectrum, can present many challenges for autistic people in a world that is so sensory-laden. It would be irresponsible to ignore the varied ways in which autistic people experience the world, and that is why mental-health services and measures to protect their legal rights are so crucial. Just because autistic people don’t want to be “cured” doesn’t mean they would rather their disability be hidden or ignored. As the Autism Self-Advocacy Network notes, “Acceptance is not passive. Acceptance is an action.”
It says a lot about how our society devalues people with disabilities when the leading national autism organization doesn’t have any autistic people on its Board of Directors — could you imagine if the NAACP was run by all white people? It’s time we start valuing disability as difference. It’s time we stop assuming people with disabilities aren’t as intricately idiosyncratic in their identities as people without disabilities. Instead of asking how people with disbilities can be “cured,” how can we as neurotypical/differently able-bodied people help make our society more inclusive and accessible? Only they can answer that question.