|Caution sign with the word ableism in all caps|
"Back in the 1950s three social psychologists joined a cult that was predicting the imminent end of the world. Their purpose was to observe the cultists’ response when the world did not, in fact, end on schedule. What they discovered, and described in their classic book, “When Prophecy Fails,” is that the irrefutable failure of a prophecy does not cause true believers — people who have committed themselves to a belief both emotionally and by their life choices — to reconsider. On the contrary, they become even more fervent, and proselytize even harder."
- Paul Krugman, NYT Op-Ed, "When Prophecy Fails"
I was the victim of a seventh-grade teacher who fervently believed that I should not be a student in her class. She was a white supremacist and a true believer that no one my race should occupy the same physical space as anyone her race. She felt it beneath her to educate me. It didn't matter to her what my academic record was. In her mind, no Black student could ever be as intelligent as a white one. Her racism and my obstinate refusal to yield to it led to an inevitable standoff.
It happened in the girl's bathroom which doubled as the changing room for gym. I needed to relieve myself. She demanded I leave the bathroom stall door open so she could "be sure I wasn't trying to steal something." Finally fed up with the months of harassment, I refused. She denied me the right to enter a stall. There we stood for 15 minutes, my teacher smirking, certain that I would urinate on myself and she would have won by my public humiliation when three classmates, who entered to use the bathroom, walked in on us, teacher and student, simply standing there glaring at one another.
|Graduation day for the author, seen at the far left in|
an orange gown celebrating with a friend and her friend's
mom ©K. Çevik
"What's going on, Kendall?" a particularly bubbly girl asked, sensing the tension in the air and nonplussed. "I was just going to the bathroom, wasn't I?" I said, never taking my eyes off our teacher. Suddenly realizing she could not be seen to keep me from using the bathroom in front of the other students, she snarled "yes" and blushing furiously, left the bathroom. That day I realized just how wedded to her beliefs this woman was. By the end of the school year, despite her best efforts, I passed the seventh grade. Her passionate insistence that a Black student could not succeed with white peers overturned, she continued to believe nonetheless that Blacks were inferior to whites. After I graduated from middle school and went on to achieve in high school, her belief in my race's incompetence continued regardless of the stellar students my color unfortunate enough to enter her classroom after my year of hell breaking that racial barrier was over.
There is an ableist trap that most visibly disabled nonspeaking individuals find themselves in. I call it the nonspeaker's dilemma. Quite simply put, once a person has been assessed to be nonspeaking and intellectually disabled, no matter what that individual does to demonstrate cognitive acuity, the presumption of incompetence is a prophecy that holds such a tight grip on its believers that it is nearly impossible to override. Society is so wedded to the myth that once a person is labeled intellectually disabled that person has no hope of cognitive competence that each generation ingests the presumption of incompetence automatically, unaware they are doing so. The myth has become a subliminal doomsday prophecy of society that lives a parasitic life within too many people who supposedly advocate and care for those who wear the ID label.
The false prophecy presuming incompetence is kept alive in part by the nonprofit industrial complex, which propagates this myth in order to drive the research funding upon which it exacts a percentage to survive. As a result, when a nonspeaking individual who also wears the ID label somehow manages to break through these barriers and demonstrate the ability to communicate in any way, for example, type independently or with tech support or accommodation for disability, regardless of the method by which this is achieved, they will continue to be presumed incompetent. This is particularly true with nonspeaking autistics.
The awful reality of this trap is it places nonspeaking disabled people who somehow manage in any way to demonstrate cognitive ability beyond expectations in an untenable position. I am a survivor of the harm done by bigotry-based presumptions of incompetence; I recognized this destructive attitude when my son entered the public school system.
|Tech is power. Mustafa holds his AAC device to|
communicate while nature watching ©K.Çevik
In the middle of an IEP meaning, when I asked how the team planned to increase executive function in my son throughout his school day, the entire team gaped at me as if I had just revealed I'd arrived from Mars. They were rendered speechless because they defined intellectual disability as profound intellectual incompetence. They believed that our son was in a static state of intellectual disability such that no intervention could increase his cognition or acuity. Now, how does any parent manage to motivate such an IEP team to generate any instructional design that might deliver learning to a student they have deemed incompetent to learn before ever attempting to teach him anything?
Over the years, our son went through several series of tests to gauge his baseline intelligence. At one point in his life, no medical expert had succeeded in getting a baseline intelligence score off him from any battery of assessments. We had arrived for his annual evaluations and another six hour day of intensive assessments. After three hours of refusing to participate or make eye contact with the formidable doctor trying to test him, our son, age 8, decided enough was enough. He stood up, placed both arms on the doctor's desk, leaned forward, looked the doctor in the eye and retaining eye contact, raised his left hand and slapped the closed door of an office cabinet with the flat of it, hard. Still staring at the doctor, he grinned and sat back down.
At this point, it became quite clear to the good doctor what we already knew. Mu wasn't responding to the test because he didn't feel like being tested. His father was allowed to enter the testing room, at which point the doctor witnessed Mu easily demonstrating a mastery of fine motor skills needed to get an oatmeal cookie he wanted because it was nearly lunchtime and he was hungry. "How can we get him to do that again?" The doctor asked. "It has to make sense to Mustafa or he won't be interested in doing it" his father answered. Once the doctor respected that boundary set by her young patient and allowed his agency in the assessment process, Mu participated in his assessments and she became the first medical expert to get a baseline intelligence result on our son.
Despite witnessing this and direct evidence of Mustafa's mastery of topics like sight words and basic math concepts, experts still concluded that everything Mustafa learned was rote, that they were wrong about his complete lack of ability to retain but this did not prove his competence. They simply assured one another he'd somehow memorized the material, but did not understand it. Our son will have to present his case for cognitive competence in such a way that it cannot be refuted. He and thousands of others like him will continue to be denied autonomy in their own lives until they are somehow able to prove they are competent to a group of experts and professionals who are such true believers that intelligence in intellectual disability is static that they will never accept the possibility that like intelligence in every human, cognition in those who carry any label can improve and increase with educational enrichment, assistive technology, and proper supports.
Society's belief in intellectual disability equaling incompetence is so strong that even when clearly visible evidence presents itself to override expectations and the prophecy of intellectual disability equaling incompetence fails, some professionals go beyond simply accepting the myth and become evangelists for the belief that any ID labeled nonspeaking individual is incompetent.
If a series of social psychology experiments were run in which two sets of disabled individuals, (one who types to speak and is a nonspeaking autistic, and one who has a physical disability and can speak but is given an iPad and told to type as if they cannot use verbal speech,) were placed in rooms and medical and education professionals were told that both the nonspeaking autistic person and the individual with physical disability alone had no intellectual disability, and both communicated through typing, they would be treated with equal respect. Because when the intellectual disability label is deleted from the equation, people base their opinions on what they quantify and observe rather than their biased presumptions about any individual.
This is the largest barrier for my son and his nonspeaking peers. Not incontinence, or behavioral challenges, or health concerns. It is the fundamental prophecy that the label of intellectual disability, when added to their nonverbal state, means a degree of disability so 'severe' that no effort on their part can prove their competence. This taints their entire lives, robs them of autonomy, destroys potential avenues of funding that could drive research into more efficient Augmentative Assistive Communication technologies and community-based supports and solutions based on the principles that autonomy and active participation in society are their human rights.
With the understanding that when prophecy fails, and some nonspeaking individual manages to prove themselves competent, it is our task as stakeholders to ensure that the individual is not objectified, treated as unique, or isolated from their nonspeaking peers in any way, we must push on and ensure that it is understood that we do not know enough about how our own brains work to grasp how competent any individual is. While trying to form ideas on how this ingrained mentality can be countered, I realized something that is being inadvertently done that must not be done.
One way of making sure it is clear that anyone who is nonspeaking and using AAC supports to communicate is doing so on their own is to allow them to write without editing their words. The Amplify Autistic Voices project was an unsuccessful exercise in seeing how many unedited autistic voices could be amplified and accepted as they were. The primary reason for the failure of such a concept was as some of those voices gained popularity and demand for their content on platforms with greater audiences increased, individuals were inadvertently objectified and othered from their peers. Further detriment when gaining a greater stage for these nonspeaking individuals was once larger platforms were given nonspeaking autistic authors' content, their words were handed to editors, 'tweaked', 'refined', and the result was that further down the road, this caused the competence of very accomplished nonspeaking individuals to be questioned.
The road to hell is paved with good intentions.
I'm going to try and explain what I mean with a story that is a perfect illustration of what happens when someone's right to speak in their own voice is tweaked, improved, or edited. I was once a coordinator for interpreters sent to immigration court. One day my manager called me to their office, telling me the DOJ had been contacted by the court in Utah over a new French interpreter. They wanted the interpreter retrained or disqualified. The interpreter, who was a native speaking French immigrant and language professor married to an American, was horrified. "How could the judge question my French?" She demanded. I asked her to go over everything she'd done in court that day without disclosing case information or compromising her client. Half way through her narrative I realized what had gone so horribly wrong. The refugee, an individual who had spent their entire childhood running from violent conflict in their homeland, was speaking a dialect of French mixed with a local language and had a 5th-grade education. The professor had decided to "correct" the refugee's French errors as she interpreted them so as she put it, 'the court was more able to understand the refugee's plight.' Thank God the individual had other interpreters prior to that hearing. I explained to the professor that it is a court interpreter's job to translate verbatim the voice of the individual not edit, appropriate, or embellish it. In changing a refugee's voice her client went from someone who spoke the colloquial French of their ancestral home to someone who suddenly commanded a university level French vocabulary, she could have caused the refugee to be imprisoned for fraud and misrepresentation of his case to the U.S. Government.
The moral of the story is that the French interpreter came very close to causing irrevocable harm to the client she was supposed to be a conduit of by appropriating her client's voice, acting based upon her presumption of the client's incompetence to 'tweak and improve' his case in court. The prophecy of the presumption of lifetime incompetence for nonspeaking individuals who are made to carry the ID label is similarly perpetuated by two opposing well-intentioned stakeholder groups that harm when they mean to help.
On the professional/service provider end, there are those who cling to the status accompanying their professions as acolytes cling to false prophets. They wrap themselves so tightly in the prejudices inherent in what science knew about intellectual disability when they were trained that they are unable to entertain the possibility that someone they were taught to believe would be perpetually incompetent must ethically be presumed competent as better assessment methods and assistive technology redefine and expand the meaning of competence and autonomy across neurology. If a professional who has spent a career erasing the agency of competent human beings suddenly learns they have harmed a great many people who they assumed they were helping they must live with the unthinkable guilt of having harmed those they were trained to help. This alternative truth, that a competent individual exists within their disability and rather than spending the resources to reach, teach, and support them those who claim to advocate for them in fact erase them from agency and control in their own lives deals a blow to the validity of many experts that they are unable to accept. This is my hypothesis on why the tremendous emotional investment in a respected professional identity places a person in such an ableist position that they refuse to dismantle any belief that might threaten this even if it means rationalizing away any proof of competence presented to them by a disabled individual seeking respect, autonomy, and a voice in their own lives.
On the parent/carer and ally end, there is the French professor's error in the story above that must be avoided at all costs. The appropriative tweaking and editing of original content written by nonspeaking people that render the end product so unrecognizable from the original draft that the authenticity of their authorship begins to come into question must end. The much voiced but little-understood concept of acceptance requires allowing our nonspeaking disabled colleagues, peers, and loved one's the power inherent in communicating without editing in their voices as much as possible. The cruelest thing that has happened to my son is the ease with which his accomplishments are dismissed as the work of a lesser being somehow taking cues on how to respond from a mother who loves him. We cannot accept this anymore if we wish the kind of genuine progress needed to end the propagation of the presumption of incompetence.
We all must continue reassessing and ameliorating our own structural ableism and not become a barrier to our disabled loved one's autonomy. If we don't begin with self-examination and self-correction, at best we will be in the position of those three social psychologists, helpless observers chronicling the unfolding of true believers in the myth of presumption of incompetence, stuck on the sidelines watching them spouting doomsday prophecies well after disabled nonspeaking people present evidence that such prophecies have failed.
Dedicated to our son, Mustafa, his hard-fought autism war to be heard, believed, and respected as he is, and my husband Nuri, who exhausts himself to give his wife and son the opportunity to keep fighting on.