While the country prides itself on its increasing acceptance of traditionally marginalized populations, disabled people continue to be stripped of their voices, and it’s hurting everyone.
Tomorrow the world changes. In the morning you’re lucky enough to score a seat on the subway, crack open the paper. Front page headline: “Big Pharma Announces Drug to Cure Homosexuality.” That’s right; through an easy three-step treatment anyone can be cured of their same-sex attraction.
“Many gay people lead difficult lives,” the Big Pharma rep says, in defense of the controversial new regimen. “In the US, they account for 63% of all new HIV infections, have higher rates of substance abuse, and are five times more likely to commit suicide than their heterosexual counterparts. With our treatment plan, they can be free of all that.”
Are you angry yet? Most of us would no doubt object to the suggestion that gay people need to be “cured.” And rightfully so—the concept is a close-minded one, fraught with cultural insensitivity and a medical ideology overlayed on one’s personal identity. It sounds ridiculous.
And yet. With regard to most “disabilities,” this is the prevailing worldview, proliferated and perpetuated by the able-bodied mainstream.
Sidebar: offended by the comparison of being gay to being medically defective? You should be. Most d/Deaf people, wheelchair users, and others traditionally considered disabled don’t much like being called defective either. And, considering that homosexuality was included in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders until 1973, the comparison is more apt that we may care to remember.
For years I’ve railed against this kind of discriminatory treatment of d/Deaf people, working to combat the ideas that sign language and deafness are problematic. Deafness, I knew, is just another way of being in the world, more akin to speaking a minority language than a disorder. Communities like historic Martha’s Vineyard, the Al-Sayyid Bedouin tribe, and Begkala, Bali, where deafness is not stigmatized, provide proof that the only disabling thing about being deaf is the hearing world’s medicalized view of the identity. All the while the Western world continues to look to the Medical Establishment and their billions as the authority on deafness, and the Medical Establishment, unsurprisingly, bellows: deafness is bad; deafness should be fixed; we can fix it; (pay us)! Why, I wondered again and again, didn’t anyone care what Deaf people had to say about deafness?
But even knee-deep in the battle against ableism, I was not immune to self-centered beliefs about “normalcy.” When it came to autism, I was a hypocrite. Not a willing one, sure, just the ignorant kind, but a hypocrite nonetheless. For a year and half I worked as an instructional assistant in an Applied Behavior Analysis (ABA) class for autistic 5-8 year olds. Because I worked in a public school, I received minimal training and was taught the basics of autism and ABA as I went along. Our head teacher was smart, cheerful, and well-versed in the curriculum, but the prevailing view of all the adults in the room was that autism was a problem to be “fixed,” insofar as it was possible.
Autism, as I understood it, was a scientifically vague deficit in one’s ability to read social cues and thus participate in neurotypical society. Though it was not considered a disease, exactly, it was certainly close; our students “had autism.” ABA therapy is a popular teaching methodology designed for students with this “disorder.” To read more about what this kind of programming stipulates as its goals, click here; what it actually looked like for nearly half the school day was my student and me sitting across from one another at an undersized table while I made demands. “Do this. Say this. Label it.”
For another large chunk of the day my fellow instructors and I were managing the behaviors borne of students’ frustration. My job was mainly to serve as a protective barrier between the upset student and his peers; as such I was cursed at, slapped, punched, bitten, scratched, spat at and peed on. These instances were viewed as tantrums and dealt with in a strictly non-emotional way: phrases like, “There is no crying” were levied in flat tones at confused five year olds.
What’s viewed as noncompliance by ABA protocol rapidly expands beyond injurious behavior to include a range of things deemed undesirable simply because they are non-normative. Nonviolent repetitive self-stimulatory behaviors (or “stimming”) widely understood to be self-soothing mechanisms, are outlawed under ABA. The reasoning goes, how will a child ever be able to interact, or blend in, with “normal” people with a tic like that?
That’s not to say that I didn’t love my students; I did. Nor is it true that our classroom was a torturous hellscape where we indoctrinated innocents into neurotypicality. Our days were also full of beautiful things: art, music, playing outside, big rubber bouncy balls, snack time, and a lot of hugging. But always there was an understanding of a right and wrong way of doing things, a power dynamic beyond that of the normal student-teacher relationship—that our students’ thoughts and feelings were inferior.
Somehow, it never occurred to me that the curriculum I was using with my autistic students was developed by the mainstream to be as medicalized and problematic as the views on deafness I considered so mistaken. Then I read The Reason I Jump. The book, written via alphabet grid by Naoki Higashida, then thirteen years old, autistic, and functionally nonverbal, answers common questions about autism, and features several pieces of his creative writing. From the onset it became clear that autism has little to do with an inability to read social cues; if anything the issue is an overwhelming empathy: “Basically, my feelings are pretty much the same as yours” Higashida writes. “For people with autism, what we’re anxious about is that we’re causing trouble for the rest of you, or even getting on your nerves. This is why it’s hard for us to stay around other people. The truth is, we’d love to be with other people…Whenever I overhear someone remark how much I prefer to be on my own, it makes me feel desperately lonely.”
Neurotypical writers were quick to downplay Higashida’s spirituality and creative idealism, saying one voice cannot possibly define such a large population. And while it’s true Higashida doesn’t speak for all autistic people, he can certainly speak for himself. (Arguably, though, he’s better-equipped as spokesman than the self-nominated neurotypical “advocates.”) And if Higashida’s experience does not mean all autistic people think and feel this way, it means that at least one does, and shouldn’t one be enough to cast doubt?
In fact, there are many autistic children and adults ready and willing to speak about the systematic oppression of a true autistic identity. Perhaps the most well-known is Temple Grandin, who has some mainstream presence, but increasingly autistic people have taken to the internet to express themselves. Julia Bascom and Emma Zurcher-Long (along with her parents) are two prominent bloggers; notably, Zurcher-Long, who is twelve years old and also uses an alphabet grid, expresses sentiments similar to that of Higashida, writing recently “autistic people are not viewed as able beings, this view makes us suffer.”
The gap between what disabled people think about themselves and how the world sees us is, as with many inequities, in part an issue of information control. In the case of autism, the most powerful (read: celebrity-backed) organization is Autism Speaks. Autism Speaks holds an often dehumanizing view of autistic people as a population that must be “cured.” It’s also been under scrutiny for its spending practices, with 36% of the money it raises for research and support going to payroll. And, in perhaps the most disconcerting turn, Autism Speaks higher-ups have a history of supporting scientifically-disproven anti-vaccination platforms.
In the Deaf world, the Alexander Graham Bell Association holds a similarly discriminatory set of policies against the people for which it purports to advocate. Bell himself was a widely-known eugenicist who argued “in an English speaking country like the United States, the English language, and the English language alone, should be used as the means of communication and instruction” and that, subsequently, Deaf people should be prevented from socializing and marrying to avoid the proliferation of a “deaf variety of the human race.” His views led to the foundations of oral education, in which deaf children were belittled and abused, their hands tied to prevent them from signing. Though without the physical restraints, this educational methodology continues today. Often the program is (forcibly) utilized in conjunction with cochlear implantation; parents who opt for implants for their children are required to commit to oral-only programs and told that children who learn sign language will never learn to speak. This, as any bilingual person knows, makes no sense and has no scientific basis, but it’s hard to argue with the cochlear implant rep who appears in the hospital room in which you gave birth, saying he’s got the miracle cure for your broken baby.
The effects of mass misinformation as the result of these kinds of “advocates” are visible on nearly every level of our society, including within the legal system. As the public and legislators become increasingly tolerant in support of previously marginalized LGBTQ populations—making landmark decisions like the one to support transgender six-year-old Coy Mathis in her transition to life as a female, or the ruling to uphold Chris Christie’s ban on gay conversion therapy for minors—things only worsen for disabled communities.
Lee Larson, Deaf single mother of two boys, found herself in custody court where the prosecutor claimed Larson’s sons needed cochlear implants “in order for them to realize their full potential in life.” The prosecution argued that Larson’s choice not to implant her children was medical neglect. And while the judge ruled in favor of Larson, she did so reluctantly, writing in her statement, “The court has no doubt it would be in [the children’s] best interest” to be implanted.
How is it that a hearing person “has no doubt” she knows what’s best for all deaf people, without any experience in the field or as a deaf person herself?
In the case of Shaun McLaughlin and his twelve-year-old daughter, Emma, both Deaf, the court ordered that she must wear her implant “all waking hours” despite complaints that it gave her a headache and the fact that her implant model had been recalled for electrocuting users. Gag orders were put in place, and Emma’s paternal grandmother was forced to remove a video that showed Emma in pain while wearing the implants from YouTube after it garnered 10,000 hits in just five days. McLaughlin eventually lost his custodial rights for refusing to comply with the court’s order.
Speaking of electrocution, it recently came to light that Advanced Bionics, the second-largest manufacturer of cochlear implants, was making and implanting devices into adults and children long after they had information the devices were prone to failure due to excessive moisture leakage, resulting in the shock and seizure of several users. The story was kept relatively quiet over the three-year period in which the implantations occurred, with the media preferring to focus on the technology’s miraculous “curing” of the deaf, and Advanced Bionics preferring to keep the money coming.
Meanwhile, last week, autistic 16-year-old Robert Robinson was murdered by his mother, who had grown frustrated with caring for him. Shortly thereafter, she committed suicide. The media almost unanimously covered the story with unwavering sympathy for a poor woman driven to wit’s end, with little information about the victim; most didn’t even call it murder at all.
But even beyond linguicide, or oppression of a cultural identity, or the reckless endangerment of and disregard for disabled people’s lives, we can increasingly see the effects of ableism on the mainstream population. Because of vaccine denialism, outbreaks of preventable, but potentially deadly diseases like measles have burgeoned in cities like New York, LA, and all across Europe. And given the high rate of intercontinental contact modern society affords children in developing countries with limited access to vaccinations are placed directly in danger. The repercussions of those who control information output and so fear anything besides linguistic and neuro-normativity continue to reverberate outward, and are for many a matter of life and death.
Autism Awareness Month has come to a close, but has any real awareness been raised? Is it, for most organizations, even the goal? Ableist messages continue to reign: that it is okay for a company to insert unsafe technology into the skulls of children in hopes that they will just speak English. That it is okay for a mother to murder her autistic child because he is just too much to handle, and for the media to cover that murder in a manner sympathetic solely to the murderer. Okay for someone to spout fake facts that put millions of children across the globe in danger. Okay to ignore or silence people when they speak from the margins.
That’s not to say life as a disabled person is never difficult, just as, when we look only at statistics, life as a gay or transgendered person is. But in either case, the benefits of being oneself cannot be calculated in tidy percentages, nor can they be determined by outsiders. Disabled people must be considered the number one source of information on their own experiences. The fact of the matter is that any minority lifestyle can be attacked with the same arguments the abled world uses against disabled communities. Disabled rights, then, are your rights, too. Allowing false advocates to misspeak for others, or for courts to mandate restrictions on a child’s language and cultural identity, sets a dangerous precedent—that a wealthy organization or a judge has the power to decide who we are, and to enforce conformity in the name of the public good.
Featured photo of Deaf students protesting at Gallaudet University in DC, courtesy Gallaudet archives.