Implicit bias and explicit bias are two distinct forms of bias that influence attitudes, beliefs, and behaviors toward individuals or groups, often based on characteristics such as race, gender, ethnicity and disability.
Implicit bias, also known as unconscious bias, refers to the automatic and unintentional attitudes or stereotypes that individuals hold about certain groups, even when they are unaware of these biases. These biases are typically deeply ingrained in our subconscious minds and can influence our actions and decisions without conscious awareness. For example, a person may hold implicit biases that lead them to associate certain racial groups with negative traits or behaviors, despite consciously believing in equality and fairness. Research has shown that implicit biases can impact hiring decisions, healthcare outcomes, and interactions with others, often in ways that perpetuate inequality and discrimination. Recognizing and addressing implicit bias is essential for promoting diversity, equity, and inclusion in various aspects of society.
Explicit bias, on the other hand, is conscious and deliberate prejudice or discrimination against specific groups of people. Unlike implicit bias, explicit bias is readily recognized by the individual holding these beliefs. For instance, an individual openly expressing discriminatory attitudes or engaging in discriminatory behaviors toward people of a certain ethnicity demonstrates explicit bias. Explicit bias can manifest in forms such as hate speech, discriminatory policies, or acts of prejudice. While implicit bias often operates beneath conscious awareness, explicit bias is a more overt and intentional form of bias. Combating explicit bias typically involves education, awareness campaigns, and legal measures to address and reduce discrimination. Both implicit and explicit biases are important to understand and address in order to promote a more equitable and inclusive society.
Showing posts with label Exploitation/ Stigma/ Discrimination. Show all posts
Showing posts with label Exploitation/ Stigma/ Discrimination. Show all posts
Cognitive Dissonance
Cognitive dissonance theory, proposed by psychologist Leon Festinger in the 1950s, is a fundamental concept in psychology that explores the discomfort people experience when they hold conflicting beliefs, attitudes, or values. When individuals encounter information or situations that challenge their existing beliefs or attitudes, they often experience cognitive dissonance, a state of psychological tension. This tension arises from the inconsistency between what they believe and what they are confronted with.
To reduce this discomfort, individuals typically employ various cognitive and behavioral strategies. They may change their beliefs or attitudes to align with the new information, seek out information that supports their existing beliefs (confirmation bias), or downplay the significance of the conflicting information. For example, if someone holds a negative stereotype about a particular group but then has a positive encounter with a member of that group, they might experience cognitive dissonance. To alleviate this discomfort, they may adjust their stereotype or minimize the significance of the positive encounter.
Cognitive dissonance theory is crucial for understanding the dynamics of attitude change and behavior. It highlights the human tendency to strive for consistency in our beliefs and actions and the discomfort that arises when inconsistency occurs. By recognizing cognitive dissonance, psychologists and individuals alike can better understand the processes underlying attitude change, prejudice reduction, and decision-making in the face of conflicting information
To reduce this discomfort, individuals typically employ various cognitive and behavioral strategies. They may change their beliefs or attitudes to align with the new information, seek out information that supports their existing beliefs (confirmation bias), or downplay the significance of the conflicting information. For example, if someone holds a negative stereotype about a particular group but then has a positive encounter with a member of that group, they might experience cognitive dissonance. To alleviate this discomfort, they may adjust their stereotype or minimize the significance of the positive encounter.
Cognitive dissonance theory is crucial for understanding the dynamics of attitude change and behavior. It highlights the human tendency to strive for consistency in our beliefs and actions and the discomfort that arises when inconsistency occurs. By recognizing cognitive dissonance, psychologists and individuals alike can better understand the processes underlying attitude change, prejudice reduction, and decision-making in the face of conflicting information
An article where I talk about its impacts with respect to autism
The Problem with DEI
DEI initiatives often assume that if you open the door, targeted people will automatically rush in. But these targeted population were told for so long that this door did not belong to them, or that its too hard for them, you are not intelligent /capable enough; if this has been the messaging of the last 100 years, there is going to be unconscious bias, where part of you starts believing this to be true (like when women are told prior to a math test, that women are bad in math, they end up doing worse on the test than if not told that info).
So the initiative has to be both opening the door and also nudges from other end saying, you can do this, we welcome you and will work to support you, demystifying the process of what the door is and how to go about even approaching that door.
So the initiative has to be both opening the door and also nudges from other end saying, you can do this, we welcome you and will work to support you, demystifying the process of what the door is and how to go about even approaching that door.
And why don't DEI initiatives automatically include disability or when disability is included, its often as an afterthought when its pointed out that its probably not PC to exclude. Why is disability not recognized as a very very historically marginalized group at the onset. The fact of a childhood disability for instance means the exclusion starts in childhood itself which perpetuates and intensifies the exclusion as you age. (Somehow the fact of disability transcends even the color of your skin and you are pushed to the bottom of the food chain).
ASSERT ECHO @Vandy
I have been a participant in the Assert (All Stakeholders Engage in Research Together) project this semester, run by Prof Beth Malow's Sleep Lab. https://www.vumc.org/sleep-in-autism/assert-resources
Its been a good experience, listening to everyone's perspective and being able to contribute, though I could not make last few sessions as it clashed with the new meetings at my new lab rotation.
The disability rights mantra has long centered around Nothing about us without us. And I am glad that to see this idea trickling down with respect to research which will (hopefully) lead us to solutions. And this effort is at happening at many places now - at universities and research centers.
If you are an autistic, please do consider getting involved by emailing assert@vumc.org. It is important that our voices are heard.
Why IQ Testing is Problematic in Autistics
Some reasons why IQ Testing is Problematic in Autistics.[What is IQ Testing]
- Communication, Language and Social Challenges: Many IQ tests heavily rely on verbal and social interaction (including comprehension, vocabulary, & verbal reasoning), which can be challenging for autistics who may experience difficulties with language, communication, (eg: difficulties with expressive and receptive language, pragmatics, and understanding abstract or ambiguous language) and social skills. This can lead to misinterpretations of their abilities.
Autism Space seen as profit making space by Private Equity
This is a continuing and troubling trend in autism.
'...private equity investments per year tripled or quadrupled from 2018 to 2021 compared to 2015.
...expected investment to continue at breakneck speed
“...They needed to start showing profits and revenue that match their valuation. … So at some point, [investors] need to start seeing a return on their investment,”
...autism therapy space could be at the point of the investment life cycle where investors are pressuring operators to shift from scale to efficiency and profitability.
...opening clinics that reach targeted patients while being “financially healthy,” Marsh said.
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Informal Removals
This is so deja vu for me.
Never mind even the struggles involved in getting access to general ed classrooms,
even special education classrooms only want the Good Patients.
=================
https://www.nytimes.com/2023/02/09/us/students-disabilities-informal-removal.html?fbclid=IwAR36fyuIXrWPV7QZMxdeHt_HPxYJy9___BwxYS0k7YIEKBarCdHdrxEAW4U
"During her son’s elementary years, Ms. LaVigne was called almost daily to pick him up hours early because he was having “a bad day.” By middle school, he was only attending an hour a day..."
"During her son’s elementary years, Ms. LaVigne was called almost daily to pick him up hours early because he was having “a bad day.” By middle school, he was only attending an hour a day..."
"The removals largely escape scrutiny because schools are not required to report them in the same manner as formal suspensions and expulsions, making them difficult to track and their impact hard to measure."
"continuation of the practice sends a terrible message to students and to school communities about which students deserve an education.”
Money, careers and fame
Autism is a proven profit-making industry. Everything in autism space costs money; not just average money but real $$$$$$. It's profit with almost no accountability. If an autistic does not progress, it because they were not going to show progress anyway, you are too old, it's too late, so don't deserve solutions for your challenges or opportunities for your strengths.
Autism is also a career-making industry, with books published, speeches of fancy words at conferences. We are surrounded by money-making "autism-expert-celebrities" though no one still has a clue.
Two birds in Frost
From my breakfast window:
Frost on the green winter grass
Glistening in the rays of the emerging sun
Tiny birds bask on the mighty tree stump
Glistening in the rays of the emerging sun
Tiny birds bask on the mighty tree stump
My small moment of awe today.
What joy!!
-Hari Srinivasan
===========
We pay so much money for all the therapy in the autism space. Here is something that is completely and absolutely FREE. The best part is, no one can gatekeep and deny its access for you or decide you are "not a good-fit."
It's AWE. Awe is beneficial to the mind and the body. And you don't have to travel far on an expensive vacation to experience awe. It's all around you - that blade of grass, that tall building you walk beneath, images from the James Webb telescope, our BFF God (forever, gonna outlast us all), or even that tiny ant on the ground.
Let's make use of and benefit from this
FREE, ACCESSIBLE & BENEFICIAL RESOURCE of AWE
by engaging in small moments of AWE everyday.
Here's another post on A Moment of Awe - Birth of a Star
Boundaries
Boundaries
Lady Liberty beckons
All to gaze at the wall in Nogales
brave hidden water in the blazing sands.
Nature weaponized!!
Boundaries
Arbitrary line drawn in world geography
Geomorphology gone extinct
Political land redistricting 1848
Human and nonhuman alike
Othering
.. the BIPOC body
...the disabled body
...nonhuman bodies when it suits power needs.
Nature exploited for supremacy
Categorize and disconnect.
Who decides?
Who gets Agency?
Binary, privilege v. pain.
The migrant body, a physical wall
The disabled body, a societal wall
Ever at edge of resources and land
Land is belonging and body
Deemed purposeless, cast aside
Inaccessibility, the ultimate price
Periphery.
(written during one my Disability Studies courses @UC Berkeley)
A Boy Like Me
In Feb 2021, I wrote an article for Alice Wong's Disability Visibility Project (https://disabilityvisibilityproject.com/2021/02/06/a-boy-like-me/) that covers a number of issues around non-speaking autistics (text of the autism also at end of this post). It went onto having quite the impact.
1. TIME Magazine (Sarah Kurchak), February 25, 2021
("In the interest of fairness, I did watch Music for the sake of this piece. I won’t evaluate it as representation, as I believe that non-speaking autistic people should be leading that conversation. (For more on the topic, I recommend starting with the short film produced by CommunicationFIRST and the essays by Mickayla and Hari Srinivasan.)")
(non-transcripted radio clip)
A Boy Like Me.
Places it was mentioned
1. TIME Magazine (Sarah Kurchak), February 25, 2021
("In the interest of fairness, I did watch Music for the sake of this piece. I won’t evaluate it as representation, as I believe that non-speaking autistic people should be leading that conversation. (For more on the topic, I recommend starting with the short film produced by CommunicationFIRST and the essays by Mickayla and Hari Srinivasan.)")
2. The Independent (Helen Brown), February 25, 2021
As the film’s final contributor, Hari Srinivasan, concludes: 'If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics.' He says that we need to change the narrative around non-speaking autistics and improve visibility in society – and pop culture – so that more actors who might better fill a role like Music in Sia’s film can come to the fore and be seen, and I agree. It’s only those tired old stereotypes that deserve to be crushed.")
3. Canadian Broadcasting Corporation (Gloria Macarenko), February 18, 2021
(non-transcripted radio clip)
("One of the big organizations, I believe they are called CommunicationFIRST, ... and they were completely ignored [by Sia]. ... That type of false promise is so damaging for trust in terms of a disability community or a minority community against a majority voice that is trying to talk over us." "As autistic AAC users like Cal Mongtomery, Damon Kirsebom, and Hari Srinivasan said in the film LISTEN, which was made in response to Sia's film, 'Ask nonspeaking autistics. Listen to nonspeaking autistics.'")
Full text of the article
A Boy Like Me.
by Hari Srinivasan
One morning in late November 2020, I woke up to find that my rather modest twitter account had somehow gained around 1500 followers overnight. The final exams were upon me and various projects and papers were coming due, so I was not quite “woke” to what was going on outside my academic bubble at UC Berkeley, at least not till the exams were out of the way.
It turned out that I had been mentioned in a conversation by Julia Bascom, the executive director of the Autistic Self Advocacy Network (or ASAN) of which I am also a board member. The conversation had been about a trailer released by the Australian music artist, Sia, for a musical titled “Music,” which featured a nonspeaking autistic character, also named Music. The twitter furor was over the fact that a non-disabled person, specifically a non-autistic, had been cast in that role of a nonspeaking autistic character. And it seems, the movie has received a Golden Globe nomination.
There was all kinds of wrong in the above scenario and for me almost a sense of deja vu. It immediately brought to mind the 2005 documentary, “A Girl Like Me,” by Kiri Davis that we had seen in my Stigma and Prejudice class at UC Berkeley. The point of the documentary was the lack of authentic representation of Black girls in the media, including even their hair and facial features. After all, the media often shapes how we view ourselves and how others around us view and esteem our place in society. When there is lack of representation or improper representation, it directly feeds into the internalization of stigma, where your membership in a group is the very cause of your negative self-esteem, feelings of inferiority and even feelings of self-hatred. In fact, in a 1940 study by Kenneth and Mamie Clark studying self-perception of race, Black girls had identified White dolls as preferred and good, while Black dolls were less preferred and associated with bad. That study went onto becoming part of the testimony used in the 1954 Brown v. Board of Education Supreme Court ruling.
Growing up, I too have wondered on the lines of “A Boy Like Me.” Where was this boy I could look up to and emulate from in books, in movies, and on TV? Someone who had to navigate the world of limited spoken communication skills and perhaps brown too? Did a boy like me even go to college and dare to dream of accomplishing great things? Where was this boy like me? I only saw Stephen Hawking on the one end and then Sheldon Cooper of the Big Bang Theory on the other.
When they did include a nonspeaking autistic character in a movie, it usually traumatized me. The focus was invariably a meltdown by the autistic accompanied by a helpless looking able bodied person that the audience sympathized with and rooted for. The meltdown was the entertainment value which gained brownie points and built character for the long-suffering caretaker.
So the fundamental question remains – do meltdowns, whether it is due to sensory overstimulation or any other reason, define the entirety of the nonspeaking autistic who is still a living, breathing and thinking individual? If such sensationalized scenes are the only images being flashed over and over, in movie after movie, what impression is being cemented about the members of this group to the rest of society? What kind of opportunities can this group hope to have if society deems them incapable or is even fearful of them at the door itself? Will they ever be allowed to be included and visible in mainstream society? What about the potential internalized harm and trauma of this stigma for members of this group?
The fact of the matter is that many nonspeaking autistics can be contributing members of society too, and go onto accomplishing much, for those who desire and are given the right opportunities to do so. Negative and fearful stereotypes result in gatekeeping of both opportunities and acceptance. Besides, the worth of an individual should not be based on their ability to contribute. Some autistics simply can’t due to the nature of their disability and that’s ok. The point being that every human life (abled or degrees of disabled) has value and this is the message that needs to be portrayed in plot lines of movies and TV. One of the things that stood out to me in my Stigma class was how continued and frequent exposure to exemplars of the category would help reduce and replace that automaticity of connection which in turn would reduce prejudice. Which basically means nonspeaking characters in plot lines need to be shown as being creative, being innovative, being involved in the community, going to college, working in new innovative and non-traditional ways, and doing great things; with all of these images presented continually and frequently in order to change mindsets.
I’m one of those nonspeaking autistics or minimally speaking autistics. I can maybe speak a dozen “want phrases” and repeat or read out a few other phrases after much practice but holding down a full length meaningful conversation using “speech” is still a work in progress for me. I would very much like to recite my poetry in my own voice and get to some basic talking conversational skills, so I keep practicing. Having to type every thought can be time consuming and exhausting, devices can be unpredictable, they are not readily accessible the way your tongue is and batteries die. Then there is my body which itself can often feel like a car with a loose steering wheel, I never quite know which way it will decide to go with a brain-body disconnect, oral-motor apraxia, repetitive body movements and sensory dysregulation issues. Meltdowns are part of my existence, and I have struggled with them.
But I’m also a student at UC Berkeley, excelling at academics and I get to do many things including being a student journalist and being part of research labs and advocacy. And get this: I teach a class on autism as a student instructor, which is a societal oxymoron, as teaching and nonspeaking autistics are not thought possible together. Me as a teacher – well, that thought startles me all the time too and seems almost unreal and temporary, an internalized cognitive dissonance, as maybe I am still caught up in my own internalization of stigma built up over the years in the special education system where negative stereotypes are often perpetuated, whether knowingly or unknowingly.
The other, though less annoying, stereotype of the nonspeaking autistic is the large headphones that we all apparently must wear. There is no factoring in of individual differences or situational differences. The message being sent is that you can whisk away sensory differences by plopping noise-cancelling headphones on a nonspeaking autistic’s ears. Problem solved and a pat on the back! Unfortunately, it doesn’t work that way as some sudden sounds can end up being magnified. Let me illustrate with an example. In all earnestness I wore headphones to my first college football game to help dampen out the crowd noise. Then came the cannon shot, fired in celebration right after a touchdown, which ended up magnified in my headphones. I got the fright of my life, my heart was racing so fast I thought I would just keel over and my eardrums would burst as I raced out of the stadium in agitated alarm. As I heard and read later, noise cancelling works by phase cancelling the peaks and valleys of regular repeated sound waves, but are less effective with sudden unexpected peaks, the cannon shot in this case, which I’m guessing sounded even louder in contrast to the other dampened noises.
Coming back to Sia’s movie, while I have not seen the film, the reviews I read are troubling as the film seems to reinforce societal negative stereotypes about autism, agency, disability as a burden, and about “sending the more difficult autistics away” to a facility, at the convenience of the caretaker, where they can be tucked out of sight and out of mind of society and rendered invisible. The film features not one but three entertainment-value meltdowns. BUT OF COURSE (sarcasm intended)! For me, it will be another traumatizing movie featuring plot lines to avoid.
What is also worrying about Sia’s film is the apparent use of restraints, which is very reminiscent of the residential Judge Rotenberg Center where GED devices (for electric skin shocks) were routinely being used as aversives in behavior therapy. In fact, getting congress on board to urge the FDA to finalize its rule on banning these electric shock devices by the JRC was one of the issues my 2019 ASAN cohort (at the Autism Campus Inclusion) lobbied for in Capitol Hill. While the FDA did finally finalize its rule towards banning these specific electric shock devices last year, it does not preclude other forms of punishments, harsh aversives, or restraints by the JRC or any facility. In fact, another legislation my ASAN cohort had lobbied for at Capitol Hill was KASSA (Keeping All Students Safe Act) which would hold schools accountable. With respect to Sia’s movie, ASAN, Alliance Against Seclusion and Restraint and CommunicationFIrst, the only nonprofit organization dedicated to protecting the civil rights of people who do not rely on “speaking” to communicate, issued a joint statement calling the portrayal of restraints as dangerous as such media portrayal by a Golden Globe nominated movie would help normalize the use of restraints against the disabled in the public psyche.
The disability community has long argued for positive and proper representation of disability in the media. Check out the Ford Foundation white paper on authentic and positive representation by legendary disability rights activist, Judy Heumann. Representation was also a much discussed topic in the events organized around the celebrations leading up to the 30th anniversary of the Americans with Disabilities Act last year (here is one review I wrote for the Daily Californian).
The essence of authentic representation is that a disabled character in a movie plot be played by a person who actually has that disability, just as a White person can’t be an authentic representation of a Black person. It is the whole idea and hope for “A Boy Like Me.”
When the trailer for Sia’s musical came out, there was much outrage amongst the disability and autistic community in that an autistic should have been used to play the nonspeaking role. There were even news articles and interviews with some autistics apparently saying they were available and would have easily played that role if only they had been called by Sia.
Let’s pause a little here – we know that autism is such a wide spectrum where the lived experiences of a speaking autistic can be different from that of a non-speaker, each individual with their unique level of support needs in other areas. For instance, using AAC (augmentative alternative communication technology) is by no means as simple as is portrayed in the media with the stereotype of a limited set of icons on an iPad screen that apparently takes care of every possible communication need of a human across every scenario. Our emotional bandwidth itself is reduced to just a few emotion icons much like Facebook. You have to turn the device on, get to the correct app, clear the screen and hope the app does not freeze on you at a critical moment. The reality is that it’s not always available or accessible, or just plain difficult to navigate, so that is a whole set of additional issues to contend with along with other autism issues, topped off by anxiety in having to manage all these in a real time conversation even as the other person is staring impatiently at you for a quick response not realizing that AAC is never going to match the speed or ease of talking. The point being, how does that former autistic become an authentic representation of the latter nonspeaking autistic? How is that “A Boy Like Me?” Aren’t we just being a little ableist here?
I don’t know if there are many nonspeaking autistic actors out there. For instance, I may be a good writer and storyteller but would make for a terrible actor. Other intersectional identities, abilities and interests may mean that not every nonspeaking autistic actor is a match for every role that comes up.
I recognize that there are no easy or quick solutions when it comes to actors as you have to match up many things. But we can try to involve non-speaking autistics in other parts of media representation about them, even if there are not sufficient numbers of nonspeaking autistic actors to make it to the front of the camera at the moment. For example, in animated movies, I would like to see more non-meltdown focused plot lines. The representation must be both authentic and positive. How about turning some of these perceived negatives into positives? Maybe that heightened sensory perception can be used to sense clues and solve crimes in a detective story for instance, whether as a main or supporting character. And as soon as I wrote that sentence, my mind started thinking of many positive plot lines.
The disability rights movement has been about speaking “with” the marginalized group by being their ally, and not “for” them by removing agency. What I would like to see from my speaking autistic allies is outrage against such plot lines and stereotyping and helping build better technology that can make communication itself more accessible.
But at a more fundamental level, I would like to see much more outrage by my speaking autistic allies at the invisibility of nonspeakers in mainstream society. I believe this invisibility starts with the use of functioning labels. By labels I refer to the very stigmatizing and dehumanizing functioning label of low functioning. Being branded low sets you up for low educational expectations, low societal expectations and gatekeeping from the get go, it sets you up for lifelong failure. No one willingly labels themselves as low, it is others doing so.
“Low” becomes a self-fulfilling prophecy as shown in the Rosenthal & Jacobson study way back in 1968 – someone’s expectation about a person or group leads to the fulfillment of those expectations. When teachers were told a certain group of (randomly selected) students would do better, they did end up doing better; the better performance was attributed to the teacher’s behavior. By extension, if a teacher is given a child with the “low” prefix, unconscious bias will translate to lower expectations for the rest of that individual’s life.
In addition, terms like “low” will cause an almost priming effect as shown by Higgins, Rhône’s, & Jones (1977). In that study, one group of participants were exposed to, or primed with, negative words like, “reckless and stubborn,” while the other group was primed with positive words like, “adventurous and persistent.” They were then asked their interpretation of a person after reading a rather ambiguous description of him. The positively primed group had a positive image and vice versa. Similarly, in the 1966 Bargh, Chen & Burrows study, when participants were primed with “elderly words” they walked slower after leaving the experiment.
The point: labels influence outcomes!
Remember “high” is a problem too as it is a relative term, its presence implies some sort of superiority and its absence indicates its opposite, which is “low.” So we must get rid of both labels. We need to be autistics together, neurodivergent together, disabled together, humans together.
Clinicians, educators, scholars and therapists still routinely use these functioning labels. If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics. Use the power of social media to spread the message. Interrupt the usage of the functioning labels when you hear it and encourage the alternative terminology of “support needs.” And let’s change the plot lines and the narratives around nonspeaking autistics so more and more are allowed to be visible in society and avail of opportunities in all kinds of areas. Then we will truly see more and more nonspeaking autistic actors who will be able to provide us with more positive and authentic representations.
We need to open opportunities for all of us to be included and belong in society. Langston Hughes had said, “I, too, am America;” to which I will add, “I, too, am human!”
One morning in late November 2020, I woke up to find that my rather modest twitter account had somehow gained around 1500 followers overnight. The final exams were upon me and various projects and papers were coming due, so I was not quite “woke” to what was going on outside my academic bubble at UC Berkeley, at least not till the exams were out of the way.
It turned out that I had been mentioned in a conversation by Julia Bascom, the executive director of the Autistic Self Advocacy Network (or ASAN) of which I am also a board member. The conversation had been about a trailer released by the Australian music artist, Sia, for a musical titled “Music,” which featured a nonspeaking autistic character, also named Music. The twitter furor was over the fact that a non-disabled person, specifically a non-autistic, had been cast in that role of a nonspeaking autistic character. And it seems, the movie has received a Golden Globe nomination.
There was all kinds of wrong in the above scenario and for me almost a sense of deja vu. It immediately brought to mind the 2005 documentary, “A Girl Like Me,” by Kiri Davis that we had seen in my Stigma and Prejudice class at UC Berkeley. The point of the documentary was the lack of authentic representation of Black girls in the media, including even their hair and facial features. After all, the media often shapes how we view ourselves and how others around us view and esteem our place in society. When there is lack of representation or improper representation, it directly feeds into the internalization of stigma, where your membership in a group is the very cause of your negative self-esteem, feelings of inferiority and even feelings of self-hatred. In fact, in a 1940 study by Kenneth and Mamie Clark studying self-perception of race, Black girls had identified White dolls as preferred and good, while Black dolls were less preferred and associated with bad. That study went onto becoming part of the testimony used in the 1954 Brown v. Board of Education Supreme Court ruling.
Growing up, I too have wondered on the lines of “A Boy Like Me.” Where was this boy I could look up to and emulate from in books, in movies, and on TV? Someone who had to navigate the world of limited spoken communication skills and perhaps brown too? Did a boy like me even go to college and dare to dream of accomplishing great things? Where was this boy like me? I only saw Stephen Hawking on the one end and then Sheldon Cooper of the Big Bang Theory on the other.
When they did include a nonspeaking autistic character in a movie, it usually traumatized me. The focus was invariably a meltdown by the autistic accompanied by a helpless looking able bodied person that the audience sympathized with and rooted for. The meltdown was the entertainment value which gained brownie points and built character for the long-suffering caretaker.
So the fundamental question remains – do meltdowns, whether it is due to sensory overstimulation or any other reason, define the entirety of the nonspeaking autistic who is still a living, breathing and thinking individual? If such sensationalized scenes are the only images being flashed over and over, in movie after movie, what impression is being cemented about the members of this group to the rest of society? What kind of opportunities can this group hope to have if society deems them incapable or is even fearful of them at the door itself? Will they ever be allowed to be included and visible in mainstream society? What about the potential internalized harm and trauma of this stigma for members of this group?
The fact of the matter is that many nonspeaking autistics can be contributing members of society too, and go onto accomplishing much, for those who desire and are given the right opportunities to do so. Negative and fearful stereotypes result in gatekeeping of both opportunities and acceptance. Besides, the worth of an individual should not be based on their ability to contribute. Some autistics simply can’t due to the nature of their disability and that’s ok. The point being that every human life (abled or degrees of disabled) has value and this is the message that needs to be portrayed in plot lines of movies and TV. One of the things that stood out to me in my Stigma class was how continued and frequent exposure to exemplars of the category would help reduce and replace that automaticity of connection which in turn would reduce prejudice. Which basically means nonspeaking characters in plot lines need to be shown as being creative, being innovative, being involved in the community, going to college, working in new innovative and non-traditional ways, and doing great things; with all of these images presented continually and frequently in order to change mindsets.
I’m one of those nonspeaking autistics or minimally speaking autistics. I can maybe speak a dozen “want phrases” and repeat or read out a few other phrases after much practice but holding down a full length meaningful conversation using “speech” is still a work in progress for me. I would very much like to recite my poetry in my own voice and get to some basic talking conversational skills, so I keep practicing. Having to type every thought can be time consuming and exhausting, devices can be unpredictable, they are not readily accessible the way your tongue is and batteries die. Then there is my body which itself can often feel like a car with a loose steering wheel, I never quite know which way it will decide to go with a brain-body disconnect, oral-motor apraxia, repetitive body movements and sensory dysregulation issues. Meltdowns are part of my existence, and I have struggled with them.
But I’m also a student at UC Berkeley, excelling at academics and I get to do many things including being a student journalist and being part of research labs and advocacy. And get this: I teach a class on autism as a student instructor, which is a societal oxymoron, as teaching and nonspeaking autistics are not thought possible together. Me as a teacher – well, that thought startles me all the time too and seems almost unreal and temporary, an internalized cognitive dissonance, as maybe I am still caught up in my own internalization of stigma built up over the years in the special education system where negative stereotypes are often perpetuated, whether knowingly or unknowingly.
The other, though less annoying, stereotype of the nonspeaking autistic is the large headphones that we all apparently must wear. There is no factoring in of individual differences or situational differences. The message being sent is that you can whisk away sensory differences by plopping noise-cancelling headphones on a nonspeaking autistic’s ears. Problem solved and a pat on the back! Unfortunately, it doesn’t work that way as some sudden sounds can end up being magnified. Let me illustrate with an example. In all earnestness I wore headphones to my first college football game to help dampen out the crowd noise. Then came the cannon shot, fired in celebration right after a touchdown, which ended up magnified in my headphones. I got the fright of my life, my heart was racing so fast I thought I would just keel over and my eardrums would burst as I raced out of the stadium in agitated alarm. As I heard and read later, noise cancelling works by phase cancelling the peaks and valleys of regular repeated sound waves, but are less effective with sudden unexpected peaks, the cannon shot in this case, which I’m guessing sounded even louder in contrast to the other dampened noises.
Coming back to Sia’s movie, while I have not seen the film, the reviews I read are troubling as the film seems to reinforce societal negative stereotypes about autism, agency, disability as a burden, and about “sending the more difficult autistics away” to a facility, at the convenience of the caretaker, where they can be tucked out of sight and out of mind of society and rendered invisible. The film features not one but three entertainment-value meltdowns. BUT OF COURSE (sarcasm intended)! For me, it will be another traumatizing movie featuring plot lines to avoid.
What is also worrying about Sia’s film is the apparent use of restraints, which is very reminiscent of the residential Judge Rotenberg Center where GED devices (for electric skin shocks) were routinely being used as aversives in behavior therapy. In fact, getting congress on board to urge the FDA to finalize its rule on banning these electric shock devices by the JRC was one of the issues my 2019 ASAN cohort (at the Autism Campus Inclusion) lobbied for in Capitol Hill. While the FDA did finally finalize its rule towards banning these specific electric shock devices last year, it does not preclude other forms of punishments, harsh aversives, or restraints by the JRC or any facility. In fact, another legislation my ASAN cohort had lobbied for at Capitol Hill was KASSA (Keeping All Students Safe Act) which would hold schools accountable. With respect to Sia’s movie, ASAN, Alliance Against Seclusion and Restraint and CommunicationFIrst, the only nonprofit organization dedicated to protecting the civil rights of people who do not rely on “speaking” to communicate, issued a joint statement calling the portrayal of restraints as dangerous as such media portrayal by a Golden Globe nominated movie would help normalize the use of restraints against the disabled in the public psyche.
The disability community has long argued for positive and proper representation of disability in the media. Check out the Ford Foundation white paper on authentic and positive representation by legendary disability rights activist, Judy Heumann. Representation was also a much discussed topic in the events organized around the celebrations leading up to the 30th anniversary of the Americans with Disabilities Act last year (here is one review I wrote for the Daily Californian).
The essence of authentic representation is that a disabled character in a movie plot be played by a person who actually has that disability, just as a White person can’t be an authentic representation of a Black person. It is the whole idea and hope for “A Boy Like Me.”
When the trailer for Sia’s musical came out, there was much outrage amongst the disability and autistic community in that an autistic should have been used to play the nonspeaking role. There were even news articles and interviews with some autistics apparently saying they were available and would have easily played that role if only they had been called by Sia.
Let’s pause a little here – we know that autism is such a wide spectrum where the lived experiences of a speaking autistic can be different from that of a non-speaker, each individual with their unique level of support needs in other areas. For instance, using AAC (augmentative alternative communication technology) is by no means as simple as is portrayed in the media with the stereotype of a limited set of icons on an iPad screen that apparently takes care of every possible communication need of a human across every scenario. Our emotional bandwidth itself is reduced to just a few emotion icons much like Facebook. You have to turn the device on, get to the correct app, clear the screen and hope the app does not freeze on you at a critical moment. The reality is that it’s not always available or accessible, or just plain difficult to navigate, so that is a whole set of additional issues to contend with along with other autism issues, topped off by anxiety in having to manage all these in a real time conversation even as the other person is staring impatiently at you for a quick response not realizing that AAC is never going to match the speed or ease of talking. The point being, how does that former autistic become an authentic representation of the latter nonspeaking autistic? How is that “A Boy Like Me?” Aren’t we just being a little ableist here?
I don’t know if there are many nonspeaking autistic actors out there. For instance, I may be a good writer and storyteller but would make for a terrible actor. Other intersectional identities, abilities and interests may mean that not every nonspeaking autistic actor is a match for every role that comes up.
I recognize that there are no easy or quick solutions when it comes to actors as you have to match up many things. But we can try to involve non-speaking autistics in other parts of media representation about them, even if there are not sufficient numbers of nonspeaking autistic actors to make it to the front of the camera at the moment. For example, in animated movies, I would like to see more non-meltdown focused plot lines. The representation must be both authentic and positive. How about turning some of these perceived negatives into positives? Maybe that heightened sensory perception can be used to sense clues and solve crimes in a detective story for instance, whether as a main or supporting character. And as soon as I wrote that sentence, my mind started thinking of many positive plot lines.
The disability rights movement has been about speaking “with” the marginalized group by being their ally, and not “for” them by removing agency. What I would like to see from my speaking autistic allies is outrage against such plot lines and stereotyping and helping build better technology that can make communication itself more accessible.
But at a more fundamental level, I would like to see much more outrage by my speaking autistic allies at the invisibility of nonspeakers in mainstream society. I believe this invisibility starts with the use of functioning labels. By labels I refer to the very stigmatizing and dehumanizing functioning label of low functioning. Being branded low sets you up for low educational expectations, low societal expectations and gatekeeping from the get go, it sets you up for lifelong failure. No one willingly labels themselves as low, it is others doing so.
“Low” becomes a self-fulfilling prophecy as shown in the Rosenthal & Jacobson study way back in 1968 – someone’s expectation about a person or group leads to the fulfillment of those expectations. When teachers were told a certain group of (randomly selected) students would do better, they did end up doing better; the better performance was attributed to the teacher’s behavior. By extension, if a teacher is given a child with the “low” prefix, unconscious bias will translate to lower expectations for the rest of that individual’s life.
In addition, terms like “low” will cause an almost priming effect as shown by Higgins, Rhône’s, & Jones (1977). In that study, one group of participants were exposed to, or primed with, negative words like, “reckless and stubborn,” while the other group was primed with positive words like, “adventurous and persistent.” They were then asked their interpretation of a person after reading a rather ambiguous description of him. The positively primed group had a positive image and vice versa. Similarly, in the 1966 Bargh, Chen & Burrows study, when participants were primed with “elderly words” they walked slower after leaving the experiment.
The point: labels influence outcomes!
Remember “high” is a problem too as it is a relative term, its presence implies some sort of superiority and its absence indicates its opposite, which is “low.” So we must get rid of both labels. We need to be autistics together, neurodivergent together, disabled together, humans together.
Clinicians, educators, scholars and therapists still routinely use these functioning labels. If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics. Use the power of social media to spread the message. Interrupt the usage of the functioning labels when you hear it and encourage the alternative terminology of “support needs.” And let’s change the plot lines and the narratives around nonspeaking autistics so more and more are allowed to be visible in society and avail of opportunities in all kinds of areas. Then we will truly see more and more nonspeaking autistic actors who will be able to provide us with more positive and authentic representations.
We need to open opportunities for all of us to be included and belong in society. Langston Hughes had said, “I, too, am America;” to which I will add, “I, too, am human!”
Log Kya Kahenge - Abelism in the South Asian Community
The event is a collaborative effort between three student groups on the UC Berkeley Campus. the ASUC Disabled Students Union, Spectrum At Cal and the ASUC Senator Ruchi Shah’s office
Even Recording https://youtu.be/ClM3urKLpko
"Disability. Even saying this word is stigmatized in South Asian culture. Saying you have a disability in desi culture automatically invites pity instead of empathy, advice without knowledge, and judgement without listening. The “log kya kahenge” mentality silences, isolates, and discourages people with disabilities. With ~15% of the global population identifying as having a disability, a large percentage being people of color, it is astonishing that disabled narrative, rights, and justice are often put on the back burner by governments and society alike.
While addressing disability justice issues is a long ongoing battle, as South Asians we can begin by finally addressing the ableism in our own community and learn how to foster a more inclusive environment for all. Join ASUC Senator Shah’s office, the ASUC Disabled Student’s Commission, and Spectrum at Cal for an educational and empowering discussion featuring South Asian disability and inclusion activists at Cal, from New York, and abroad! It’s time to move past this era of fear and “log kya kahenge” and embrace the diversity that makes our community so beautiful."
Mental-Cripple
The term "mental cripple" has been used historically as a derogatory term to refer to people with intellectual or cognitive disabilities, and was often used in a way that reinforced negative stereotypes and discrimination against this population.
The term mental-cripple was used to refer to autistics as seen in this 1965 nice-page photo essay in Life Magazine featuring Dr Ivar Loovas and ABA therapy.
When Priviledge is Exploitation of the Disabled. Rinse Repeat
Today’s BBC and CNN and many other media outlets ran stories on Lori Laughlin’s daughter and how “apparently contrite” she is and how she blames her privilege for not even being aware of her mistakes.
Everyone is talking about how the sports quota was misused and how money was used to buy seats. There seems to be less outrage over the exploitation of a vulnerable population.
Why is there not more outrage
shame on you talk shows for inviting these people back and giving them visibility
Shame of you mainstream newspapers for highlighting and making newsworthy a carefully orchestrated PR image rebuilding campaign of celebrities, that too in a year where you were working on touting the 30th anniversary of ADA.
Is this why 150 folks with disabilities crawled up the steps the steps of Capitol Hill in 1990 to get the ADA passed?
Is this the use for disability accommodations.
It in incredibly hard for real disabled people to get a dx in order to access services.
Accommodations are hard fought for in order to provide equity of access for disabled people. it is a struggle to get even basic accommodations at every level often involving lawsuits.
I’m a psychology student and deeply ashamed of the psychologists who handing out disabled labels to privileged kids so they can exploit disability accommodations. It's a violation of the disability community.
Shame on anyone who is enabling such people to become social influencers again.
What message are you sending. that its ok to exploit and violate a vulnerable if you are privileged, because money can buy you a PR firm in case it backfires.
What is the message being sent out, that the disabled community are sitting ducks for exploitation as and when you want?
Coming and saying you was unaware because of your privilege seems like a made up another "privileged" excuse especially when you read the LA times article that talks about the methods used. Students were coached on how to act “slow” so they could get an learning disability dx. Which meant they got extra time for their SAT and ACT tests.
Did privilege mask the fact that pretending to be slow to get a disability diagnosis is somehow wrong?
Did privilege mask that getting the extra time on tests or that private time seem not quite right?
Its not just exploitation, it feel like a violation of the disability community. it is real damage being done to the disabled community which is trying to so hard to make inroads into acceptance and inclusion.
If a person is really contrite, and wants to not just privilege as an excuse, try to truly understand the other side. Don’t talk the talk, walk the walk. Koin the peace corps, go work in a real underprivileged area for a few years, without using it as a photo op or a background to your social media. Live like that community, dress like that community, eat like that community and do some good for that community.
You can only become a “somebody" when you become a “nobody" who is really making a real difference to that community.
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