Stop labeling, start supporting: Depicting Eric Garcia's message about autism
In "We're Not Broken: Changing the Autism Conversation," autistic journalist Eric Garcia urges society to take a new approach to autism.
Earlier this year, I wrote a column for The NewsHouse about shifting from autism awareness to autism acceptance. Since, I have concluded that awareness campaigns for autism and other developmental or intellectual disabilities are rooted in a pursuit for a cure, rather than expanding support and acceptance.
In autistic journalist Eric Garcia’s groundbreaking book, “We're Not Broken: Changing the Autism Conversation,” this juxtaposition is a mainstay. Garcia writes that instead of raising money in search of a cure or swamping autistic people with different labels, like functioning labels, the focus must revolve around helping autistic people live more fulfilling lives, just as they are. From my perspective, as a journalist, advocate, and person with cerebral palsy, I agree -- disabled people deserve to be accepted as we are.
Garcia debunks the myths about autism taking more of a toll on people than deadly illnesses do, being an inherently challenging experience and autistic people lacking empathy. It's a natural part of the human race, he argues, yet much of the research around autism revolves around finding the root causes or the best way to treat autistic people. Only 6% of funds the US government spends on autism goes toward improving supports for autistic people, García cites.
Efforts to eradicate disability cast autistic or otherwise disabled people as failures, Garcia points out, and ignore that autism becomes a central part of one's identity. Functioning labels provide more ways for autistic people to be discriminated against, he explains. They double down on the medical model-based approach, where the focus is on making autistic people more normal. But most of all, he says, they take away from the conversations that can be more productive and beneficial and ultimately move perceptions of autism forward.
In doing so, Garcia splits the book into eight sections: policy, education, work, housing, health care, relationships, gender, and race. It revolves around ending efforts to make autistic people less autistic, centering autistic voices and shutting down the theories about vaccines causing autism and autism only impacting children. He says autistic people live in a world that “penalizes them for not playing by its rules,” and this seems to be the line that defines the book.
Not only is there a widespread misunderstanding about autism, autistic people, and what they want, but there's little effort to gain an understanding, particularly about what autistic people want and need. It's a consistent struggle discussed through many of his points, which are directed toward autistic people, but hold relevance in the broader disability community, like functioning labels and support needs.
He calls for a transition from focusing on perceived functioning capacity, which he says create unnecessary divides and erase the commonality among autistic people. Autistic people have more in common with one another and nonautistic people than is sometimes acknowledge, he argues. What we should be focusing on is support needs, he says, and think about autistic people based on what they need to be successful. Instead of referring to autistic and disabled people as low functioning or high functioning, Garcia writes, we should begin thinking about them as having high support needs or low support needs.
This is the concept that has stuck with me since I finished the book. It represents a shift from the medical model of disability to the social model, specifically with the simple change in wording. The word “functioning” makes me think about the biological makeup of a person, and it creates a vague binary, somewhat defined by capitalism, where the “high functioning” label indicates a disabled person presumably can get a job and live independently and the “low functioning” label oten indicates a disabled person needs round-the-clock care.
Classifying disabled people according to support needs makes more sense. Not only do functioning labels work to manipulate the humanity in disabled people, but they also create a vague way to classify people. To me, they aren't specific -- in other words, they leave me wondering what an individual needs. An individual could be the smartest person but then need help with daily tasks.
I see more specificity in the support needs classification -- I see it as calling things as they are. It paints a more complete picture. In order to be productive, presumably what high functioning refers to, disabled people need more support than their nondisabled peers. That could mean needing assistance eating or getting dressed, or it could mean needing help creating a schedule for the week. One isn't better or worse than the other, nor do any make one able to function less. But in order to function like we are capable of, many of us, disabled people, need some kind of support.
But the use of functioning labels represent an intentional effort to question the intelligence of autistic and disabled people and use it to deny them the rights that go unquestioned when applied to nondisabled people. Furthermore, Garcia writes, it assumes that “high functioning” disabled people with less support needs do not struggle while painting the “low-functioning” people as incompetent. In dividing the community through these labels, it harms both parties. Each autistic person -- and each disabled person -- finds themselves in a unique spot in between the polls of support needs.
It's about how functioning labels illustrate some disabled people as less-than-human. When someone is perceived to be unable to fully function on their own, society says that their lives are worth less than the “average” person. And when a disabled person is unable to speak, the assumption is that they don't have anything to say -- and people ignore the technology available to help with communication. Throughout the book, García interviews some people who use assistive technology to communicate, including different perspectives and showing that not being able to speak is not the same as not having anything to say.
If nothing else, those interviews show the importance of person-centered, support-centered approaches for autistic and other disabled people. From a broader perspective, though, they could be considered a microcosm of García’s main point and the premise of the disability rights movement as a whole: disabled people don't need to be fixed and simply want support to live fulfilling and independent lives.
Those interested can purchase “We're Not Broken: Changing the Autism Conversation” here.