Showing posts with label Publications. Show all posts
Showing posts with label Publications. Show all posts
My first book reading
my first book reading (via zoom) at the Oakland Asian Cultural Center, on 7/22
The last time I was published by Scholastic in an anthology, there were readings in Battery Park,NY and I never went as I thought I would not be able to participate, much to my regret now.
So this was my very first attempt using text to speech to read out the excerpts.. yeah.
Thursday 7/22, Essential Truths has their virtual Oakland Book Launch, hosted by Oakland Asian Cultural Center, from 7:00 p.m.-9:00 p.m. PST!!!!
Chat Comments
19:03:05 From Rachall Lee, she/her (OACC) to Everyone:
Today’s Program:
1) Opening & Land Acknowledgement
2) Guest Presentations
3) Open Discussion/Q&A
4) Closing
19:03:55 From Rachall Lee, she/her (OACC) to Everyone:
Native Land website: https://native-land.ca/
19:37:26 From danny ryu (they/them) to Everyone:
Go hari!!
19:37:30 From Tria (she/her) to Everyone:
So wonderful, Elmaz! And yay Hari!!
19:37:47 From Rachall Lee, she/her (OACC) to Everyone:
Hari Srinivasan is currently a student at UC Berkeley and a student journalist at the Daily Californian. Hari is a prolific writer, having won many awards for his writing and poetry. He is also a minimally speaking autistic and passionate about disability justice. His advocacy was mentioned on President Obama’s Instagram campaign on the 30th anniversary of ADA
19:37:56 From Kelechi Ubozoh (she/her) to Everyone:
I mourn the loss of the human body
19:38:05 From Diann Leo-Omine (she/her) to Everyone:
Zoom the new reality
19:38:13 From danny ryu (they/them) to Everyone:
A microscopic virus brought the world to its knees
19:38:32 From Sridevi to Everyone:
the irony!
19:38:40 From Diann Leo-Omine (she/her) to Everyone:
So true, Hari!
19:38:50 From Elmaz Abinader, She/hers to Everyone:
Truth to power
19:38:54 From Lenore Naxon to Everyone:
Indeed.
19:38:58 From Akemi Chan-Imai, she/her (OACC) to Everyone:
<3 <3
19:39:12 From Kelechi Ubozoh (she/her) to Everyone:
when the able bodied demanded it the impossible became possible overnight
19:39:20 From katie aliféris to Everyone:
TRUTHS!!!
19:39:21 From Sandra Bass to Everyone:
Cal in the house!
19:39:21 From Akemi Chan-Imai, she/her (OACC) to Everyone:
yes!!
19:39:34 From Vanessa Cabrera to Everyone:
when I was there I wasn’t
19:39:45 From Diann Leo-Omine (she/her) to Everyone:
Somehow I was on equal footing
19:39:53 From Faria to Everyone:
Zoom as an equalizer
19:39:58 From danny ryu (they/them) to Everyone:
I became part of the conversation
19:40:07 From Sandra Bass to Everyone:
A part of the conversation rather than an observer of conversations.
19:40:10 From Lenore Naxon to Everyone:
He's opened my eyes.
19:40:12 From Christl Perkins to Everyone:
became part of the conversation, more than an observer of conversations
19:40:17 From Shirley Huey (she/her) to Everyone:
^^^
19:40:39 From Christl Perkins to Everyone:
definitely a lot of intersectionalities
19:40:44 From danny ryu (they/them) to Everyone:
yes.
19:40:45 From Shirley Huey (she/her) to Everyone:
yes
19:41:00 From Yeva Johnson to Everyone:
Hari, thank you for these lessons on intersectionality!
19:41:03 From Lorraine Bonner to Everyone:
Elijah McClain
19:41:16 From katie aliféris to Everyone:
yes!!!
19:41:20 From Sandra Bass to Everyone:
survival of the kindest!
19:41:21 From Faria to Everyone:
Survival of the kindest <3
19:41:21 From Tria (she/her) to Everyone:
Yes, Hari! All these truths.
19:41:21 From Akemi Chan-Imai, she/her (OACC) to Everyone:
survival of the kindest
19:41:24 From Kelechi Ubozoh (she/her) to Everyone:
<3
19:41:24 From danny ryu (they/them) to Everyone:
Survival of the KINDEST!!
19:41:28 From Yeva Johnson to Everyone:
Survival of the kindest, never heard of that until today! Thank you!!!
19:41:28 From katie aliféris to Everyone:
^^^
19:41:30 From Yeva Johnson to Everyone:
❤️❤️❤️
19:41:30 From Shirley Huey (she/her) to Everyone:
yes
19:41:37 From Tureeda Mikell to Everyone:
Great information, Hari!
19:41:43 From Sridevi to Everyone:
Sadly, it's true! worse for those with more intersections
19:41:53 From Sandra Bass to Everyone:
Project our goodness into the world through ACTION!
19:41:54 From Tria (she/her) to Everyone:
Thank you for this daily nudge <3 <3
19:41:55 From Vanessa Cabrera to Everyone:
thank you!!!!
19:41:56 From Elmaz Abinader, She/hers to Everyone:
yay
19:41:56 From Sandra Bass to Everyone:
Thank you Hari!
19:41:56 From Faria to Everyone:
Hari!! Thank you!
19:41:57 From Yeva Johnson to Everyone:
Thank you, Hari!!!❤️❤️❤️❤️
19:41:58 From danny ryu (they/them) to Everyone:
Wowwwwww thank you hari
19:42:02 From Kelechi Ubozoh (she/her) to Everyone:
HARI SO MOVING!
19:42:02 From Sandra Wassilie to Everyone:
Beautiful message, Hari: survival of the kindest.
19:42:05 From Susana Praver-Perez to Everyone:
Thank YOU Hari!!!
19:42:07 From Sridevi to Everyone:
daily nudge for long term!
19:42:08 From Tureeda Mikell to Everyone:
Yes all that’s Good within ourselves! Thank You!!!
19:42:12 From Christl Perkins to Everyone:
Wisdom - thank you Hari!
19:42:14 From Nancy Hom to Everyone:
Let us reach down into that goodness!
19:42:18 From Shirley Huey (she/her) to Everyone:
Thank you Hari!
19:42:27 From Johnny Huy Nguyen to Everyone:
Thank you for the real talk and the hopefulness
19:42:31 From Pardis Esmaeili to Everyone:
So insightful
19:42:49 From maestro mathmattox to Everyone:
10Q so much hari!
Essential Truths - The Bay Area in Color
My poetry-prose piece titled "Survival of the Kindest: Truths from a Zoom Reality" is part of this anthology by BIPOC writers and artists from the SF Bay Area.
Order the book at HERE
Amazon Review: Poetry, prose and artwork by 130 Black, Brown, Indigenous, and People of Color – from poets laureate and published authors to high-school students and closet writers, from teachers and healthcare providers to the formerly unhoused. Themes include: What has it been like living with loss and uncertainty? What has tested and inspired you as a person of color or ally? What gives you the strength to keep going? How are you working for positive, sustainable change? What are the challenges, lessons and rewards of becoming part of the solution?
https://www.amazon.com/Essential-Truths-Bay-Area-Color/dp/1733059024/ref=sr_1_1?dchild=1&keywords=essential+truths%3A+the+bay+area+in+color&qid=1623887550&sr=8-1
Some press-releases about the book
https://www.sfexaminer.com/entertainment/people-of-color-share-essential-truths/?fbclid=IwAR25w1_N8oQPV6EcjAHDCbthFR0p5oYB8zL1PJy_FP0ihkyo9b5DtSVRa5g
Blast from the Past - Vagaries of English Phraseology
https://www.dailycal.org/2019/04/07/vagaries-of-english-phraseology-a-personal-essay/?fbclid=IwAR0NVna3qNWZLdQdG6RMm683Qp0ecFik7w3c35I7EZifyCVhAPdGLy4Zj8w
Power
My interview with Prof Dacher Keltner on "Power" for the Daily Cal
https://www.dailycal.org/2021/03/05/dacher-keltner-talks-changing-the-social-dynamics-of-power-powerlessness/
https://www.dailycal.org/2021/03/05/dacher-keltner-talks-changing-the-social-dynamics-of-power-powerlessness/
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!”
A work in Progress when it come to the Disability Community
“As a disabled autistic, I have often wondered about the conversations on inclusion, access and civil rights that still seem to be a work in progress when it comes to the disability community.”
-Hari Srinivasan
“This is Our Campus Too”, The Daily Californian
Redefine the Table
“It is the existence of laws like the ADA that ... allows me to not just demand a seat at the table so that individuals like me can be part of the conversations around change, but question if the table itself needs to be redefined.”
-Hari Srinivasan, “Born Into the ADA”
The Daily Californian
The Daily Cal's Disability Impact Special Issue
The Daily Cal came out with A Disability Impact Special (23 articles). A tribute to 30 Years of ADA.
I have been pushing for such an issue for a few months now. I was able to give input on what the front art cover should look like. Its black and white images of the disability rights movement overlaid with the modern face of disability in color; color in more ways that one - different races, different disabilities, visible and invisible disabilities.
Check it out https://www.dailycal.org/section/special/30-years-of-ada-2020/
Other articles in the issue by me are
https://www.dailycal.org/2020/10/23/born-into-the-ada/
This is our Campus too - Disability in Higher Ed
https://www.dailycal.org/2020/10/23/disability-higher-education/
Collaborating on Anxiety in Neurodiversity
Over the summer, I was part of a Stanford Rebuilt Project - NDGifts (Neuro diversity, Giving Individuals full team success.). It was a collaborative effort by around 72 people from across the world. It is the idea of helping employers better understand ND so that ND folks also become part of the employment landscape. I wrote the section on Anxiety as Comorbidity of the 81 page report.
Launch Event on 9/3/20 (From 0:52 mins) - on Youtube
Link to the Report: My section starts on Page 50
I actually heard about this project from another recent Berkeley graduate, Cole, who is also part of this project. It’s been an unusual summer sitting at home, with rampant cabin fever.
There were many areas that Tiffany laid out that we could get involved in and frankly I was feeling a little overwhelmed at the beginning. I already deal with a lot of anxiety and this summer of pandemic has not been kind to many of us autistics in some ways and it has felt very oppressive and suffocating.
So I thought, why not take on the topic of anxiety as a co-morbidity and write on it. Writing can be cathartic and therapeutic as well as informational for others, and I have written on mental health in autism before.
Other topics I was interested in writing about was how neurodiversity is defined, how it is represented in the media and the whole special education system which is a mess with gatekeeping at every level. Had lots of thoughts on many of these things. Of course it's absolutely unrealistic to take on writing so many. So I focused on the anxiety part. But was able to add inputs to other different areas in the meetings.
Tiffany was also super helpful in funneling a lot of research articles my way as I was trying to set up the remote login to the Berkeley library system to access research materials. So that was super helpful.
Sometimes the hardest part is to get started and Nicole was really great on that and she outlined a nice framework to work within. It was great working with Nicole.
So the section is a combination of literature review of existing research and incorporating personal experiences to give it a human angle, that there are real people at the end of it reflecting liv’d experiences.
I think mental health is something that people have not quite understood, a kind of fuzzy logic. Sometimes it seems like the newest buzzword, to be used almost like a fashion accessory, which saddens me as it dilutes the needs of those who really have to liv with it.
Everyone also seems to assume that Mental health is a stand alone condition. So if you have autism, it must preclude anxiety. I think what we are trying to say is that anxiety is a very real thing, a very real co-existing condition, a very real comorbidity of neurodivergence.
If you think about it, Mental health is inevitable after years of feeling different, that you don’t belong, and being excluded. The nature of the neurodiversity itself, whether it's autism or ADHD or dyslexia or dysgraphia, can itself be a source of anxiety as can environmental factors and societal attitudes. We go into explaining these in the report. It does not matter if the disability is very visible like in my case or invisible as in the case of many others, each has different anxieties around it.
I have both learned from and enjoyed writing this section as well as reviewing and providing feedback to other sections.
I think one of the surprising ironies of this pandemic, or rather its bright lights, is that zoom has been able to connect us to people from around the world. It was amazing to hear different perspectives across times zones and across continents. So we were zooming and working off the same google drive and it did not matter that we were literally crossing physical oceans.
As an autistic I have a huge personal stake in seeing improvements across the board for our community. I tentatively attended the first meeting and found an important area was being targeted, getting employers to understand what neurodiversity was about.
You see, you can implement all kinds of laws to mandate equitable access to employment, but laws will not translate to anything as long as employers feel uncertain and uncomfortable about what they are dealing with.
It's no use just telling employers that they need to be doing this for the greater good because everyone needs to be included. They will always find a workaround to not go into unknown employee territory if they don’t understand what accommodations can look like or that there can actually be advantages to them. Neurodiversity is a huge spectrum which can make it seem overwhelming but it can also be a spectrum of un thought of skill sets that can be harnessed.
I had another stake in this project in that some faces in the neurodiversity populations such as autistics with higher support needs, are less visible even to general society, and therefore less visible to employers as well. For instance, I’m not the image of what you imagine a college going autistic would look like. But why should individuals like me be a rarity in the college world and hence the employment world. I wanted to give a voice to this population as well, that we exist and have skills to contribute too. And we can create win-win situations.
It stands to reason therefore that as potential employers learn about neurodiversity, they will become more amenable to including all of neurodiversity in the employment arena. We can help employers get over this fear of the unknown and find out that perhaps we are all not so different after all. I believe this project is a step in expanding understanding and kind of demystifying neurodiversity.
Simple really, from my point of view as an autistic. All of us, whether abled or disabled want to be contributing members of society. We all need to wake up to something meaningful every day.
Anxiety as Comorbidity By Nicole Seaward & Hari Srinivasan
Over the summer, I was part of a Stanford Rebuilt Project - NDGifts (Neuro diversity, Giving Individuals full team success.). It was a collaborative effort by around 72 people from across the world. It is the idea of helping employers better understand ND so that ND folks also become part of the employment landscape. I wrote the section on Anxiety as Comorbidity of the 81 page report.
Link to the Report: My section starts on Page 50. Here it is again for reference.
Link to the Report: My section starts on Page 50. Here it is again for reference.
Anxiety as Comorbidity in Neurodiversity
By Nicole Seaward & Hari Srinivasan
Reviewed by Kamel Webster
Overview of Anxiety
Anxiety is a universal human experience that triggers the impulses to fight, flee, or freeze. Symptoms of anxiety include “persistent feelings of restlessness, irritability, difficulty concentrating, sleep disturbance, fatigue, nausea, diarrhea, and muscle cramps” (Bandelow, Michaelis, & Wedekind, 2017). Anxiety is the result of both biological and environmental factors. “Childhood adversity, stress, or trauma” contribute to the development of anxiety disorders with the age of onset being around eleven (Bandelow, Michaelis, & Wedekind, 2017). Anxiety can be extremely intense and result in illness and lost time at work or from school. Chronic, pervasive anxiety is often characterized by excessive worry, rumination, and anticipatory anxiety. This generally results in avoidance behavior which reinforces anxious feelings (Riordan & Singhal, 2018) and can impact one’s participation in daily life. While optimal anxiety increases performance, too much can have a detrimental impact, and when left untreated, anxiety can cause significant functional impairments (Riordan & Singhal, 2018). When one is experiencing anxiety, the state of arousal can be so distracting that learning and memory are negatively affected (Riordan & Singhal, 2018). Furthermore, anxiety can disrupt relationships as well as social development (Riordan & Singhal, 2018). Common treatments for anxiety include both therapy and pharmacological treatments. It is important to identify and treat severe anxiety, but also to recognize the occasional benefits of anxiety in its milder forms.
Autism Spectrum Disorder (ASD)
Anxiety is common in those who are autistic as a result of sensory sensitivities, societal expectations, disclosure, and camouflaging. The illustration by Halim, Richdale, & Uljarević (2018) below provides a succinct overview of the many causes of anxiety in autistics. Estimates of the co-occurrence of anxiety and autism range from 40% (Rosen et al., 2018) to 48% (Smith, Ollendick, & White, 2019). Furthermore, research has shown that the added presence of anxiety can significantly impact quality of life (Smith, Ollendick, & White, 2019). Autistics prefer routines and when one is disrupted this can cause significant stress to the individual. Therefore, the management of the “intolerance of uncertainty” is an important factor in addressing anxiety in autistics. (Hwang et al., 2019).
In addition to the factors noted above, there are various ways in which the social environment can cause or exacerbate anxiety in autistic individuals. One of the authors of this section, Hari Srinivasan, has autism, ADHD and Dysgraphia. He can testify to the pressure of constantly trying to fit into “normal” societal expectations beginning in childhood. Since the societal “normal” itself is ill-defined, it is akin to chasing a moving target which is a constant source of stress. The result is constantly facing gatekeeping at every step, be it in education, social opportunities and in the field of employment. Autism can be both visible and invisible both of which can contribute to anxiety in their own way. For instance, Srinivasan’s autistic traits, with atypical body mannerisms and limited speech, are very visible. Therefore, disabilityrelated stigma may exist, whether overt or subtle, from employers and co-workers from the start. Those with an invisible form of autism face the dilemma of trying to camouflage their autism or disclosing their disability in order to avail of the ADA accommodations; either choice contributing to anxiety. In addition, a common misconception is that autism somehow magically disappears in adulthood, when in reality, years of therapy have only served to ‘mask’ some of the more overt atypical mannerisms. This means that anxiety associated with being autistic continues into adulthood though the intensity of anxiety may well depend on an individual's physiology and resilience.
Untreated anxiety will negatively impact entering the workforce, sustaining employment and enjoying the quality of life one expects from productive employment. Another author of this section, Nicole Seaward experienced autistic burnout after too many years of camouflaging and trying to fit in as “normal” in the workplace. Seaward experienced daily panic attacks and anxiety related to work that eventually became too much and she temporarily lost many of her executive functioning skills making independent living difficult and working impossible. Autistic burnout is still a new term and is characterized by “chronic exhaustion, loss of skills, and reduced tolerance to stimulus” (Raymaker et al., 2020, p. 136). Autistic burnout has serious consequences that can be reduced when the proper supports are in place and the individual no longer feels the need to hide their autistic traits (Raymaker et al., 2020).
Attention Deficit Hyperactivity Disorder (ADHD)
ADHD presents varying degrees of challenges in the areas of hyperactivity, inattention, impulsivity, concentration, productivity, memory, and focus. Comorbid and ‘hidden impairments’ are common among those with ADHD, including anxiety (Adamou et al. 2013). In fact, nearly 25% of children diagnosed with ADHD had some form of anxiety disorder (Bilgiç et al., 2013). Many of the challenges associated with ADHD “generate anxiety-provoking situations” (Bilgiç et al., 2013). Individuals with ADHD may struggle to maintain their focus which can impact task completion. Their memory might be poor due to being distracted while intaking information and learning. In other studies, a physiological link has shown that anxiety in the ADHD population correlates with lower neural activity or poor performance with visuospatial working memory tasks (Meer et al., 2017).
Srinivasan points to his experience of ADHD as a cause of anxiety. In his case, ADHD can mean an impulsive fidgeting body, which society does not regard as an appropriate social mannerism. There are also some internal conflicts when ADHD is combined with autism - ADHD can mean a certain need for newness (easily bored) which conflicts with “sameness” that the Autism desires. Depending on the situation, environment and topic, attention itself can go from hyper focus to inattention. The level of body activity too can go from hyperactive to hypoactive. Having to navigate the terrain of a potentially unaccepting social or workplace environment on top of the uncertainty of your own body reaction creates for constant anxiety laden scenarios which affect productivity
Dyslexia
Anxiety is often higher in dyslexic individuals due to the near constant challenges related to learning, subsequent feelings of inadequacy, and fear of failure (Carroll & Iles, 2006). Dyslexia is marked by challenges with writing and reading, along with functioning memory, processing speed, organization, and time management. As a result of these challenges, dyslexics are associated with “depression, anxiety, lower self-esteem, and often, behavioral problems” (Livingston, Siegel, & Ribary, 2018). Weak reading skills can contribute to lower academic achievement which has shown to lead to an increase in levels of social anxiety (Carroll & Iles, 2006). Negative emotions from living with dyslexia can contribute to “lower self-efficacy and competency relating to work, and increased work anxiety” (Livingston, Siegel, & Ribery, 2018, p.126). The challenges of dyslexia start in the early years of education, continue into adulthood and can impact success in the workplace.
Dysgraphia
Dysgraphia can be developmental or acquired through injury and is characterized by difficulty with the physical act of writing or typing due to challenges with fine motor skills (Tafti & Abdolrahmani, 2014). Difficulty with gripping a writing utensil, typing written words, discerning units of language (especially new words), and managing working memory contribute to frustration and low self-esteem (McCloskey & Rapp, 2017). Furthermore, when an individual is focused entirely on writing words, they are not fully able to concentrate on learning and therefore can fall behind. The experiences of repeated failures, bullying, and loneliness associated with dysgraphia are tied to increased levels of anxiety (Biotteau et al., 2019). As mentioned above, feelings of anxiety lead to avoidance behaviors and this can result in the dysgraphic individual opting out of experiences that will increase their education and chances of engaging in fulfilling employment.
Srinivasan offers an explanation of his experience of dysgraphia as related to motor apraxia, motor memory, motor planning issues and even dysregulation in the ability to form a body schema. There is more to writing than just the ability to grip and pick up a pen or pencil and scribble on paper. There is a lot of motor planning involved, in what direction the hand should move, by how much, at what angle, the font size, and the spacing. These tiny adjustments can be hard for a person with poor fine motor skills. A whole sequence of movements go into writing each letter. A poor body schema means the brain is constantly trying to keep track of where the hand is in space and time on top of the other tasks involved. For a typical person, these movements are embedded in their motor memory, making the writing task automatic, but motor apraxia and poor body schema means that such sequences of motor movements take much longer or do not make it into the motor memory. So, the act of writing itself ends up as a laborious task of having to motor plan all over again each time and distracts from the attention and thinking processes. Srinivasan can see the letters in his head but is never quite sure if he will be able to pen it on paper, which leads to tremendous anxiety. He says his motor instinct is to write his name, as that is an activity he was made to do over and over again in his special education years. When compared to writing, the act of typing, though it has its own challenges, seems a relatively easier motor task, as it requires the press of just a single key for each letter most of the time.
All neurodivergent individuals are unique, though anxiety seems to be common to many of them (Tafti & Abdolrahmani, 2014). Individuals may not be aware that their work performance or behavior is being impacted by anxiety. Deficits in social interactions and transitions are a challenge for many who are neurodivergent and may further contribute to anxiety. There is also a great deal of stigma with neurodiversity, which creates anxiety around disclosure and impacts emotional health (Livingston, Siegel, & Ribery, 2018). By understanding and accepting the challenges associated with neurodivergence and working to increase self-advocacy, employers can reduce employees’ stress and anxiety. The goal is an accepting, welcoming environment, creating a win-win for both employers and neurodivergent employees.
Life’s challenges include facing the uncertainty of societal expectations, in addition to dealing with autism’s core features, such as sensory sensitivity, repetitive behaviors and sameness behaviors, and other less discussed issues like lack of a body schema and poor fine motor skills in Srinivasan’s case. He feels that anxiety is a very real and often unacknowledged comorbidity of neurodivergence, though the intensity of anxiety may depend on an individual’s diagnosis and resilience. While anxiety management and coping techniques can be useful, helping employers understand neurodiversity and create an accepting workplace may do even more to develop resilient employees. The neurodivergent mind, when nurtured in the right environment, has much to offer in the workplace, including creativity and innovation
Superfest Film Shorts
https://www.dailycal.org/2020/07/24/superfest-film-shorts-panel-examine-increasing-visibility-of-disability-in-mainstream-film/
My article in the Daily Cal on SuperFest's film shorts screening event, and discussion on the increasing visibility of disability in mainstream cinema.
Title: Superfest film shorts, panel examine increasing visibility of disability in mainstream film
Superfest, the world’s longest disability film festival, continued its ADA-30 celebration with Disability Pride Philadelphia by screening film shorts that provide a no-holds-barred glimpse into the diversity of disability.The screening on July 10 was followed by a panel discussion of the films’ impact in the current landscape and the growing momentum of disability visibility in mainstream film.
Now celebrating 20 years, the first film short, “Disability Culture Rap,” was the creation of the late Cheryl Marie Wade, a cultural arts poet performer, disability rights activist and UC Berkeley alumna. Even as the powerful words of the lilting rap sweeps the audience through the disability rights movement — of which many campus alumni have played a huge role — a diverse range of disability voices unapologetically enlighten the audience on disability culture: “It's about who we are...Its about power...it's about freedom!!”
As panelist Lawrence Carter-Long remarked, most media around disability seems to beg to be included and accepted, but “Disability Culture Rap” gets in the audience’s face and demands that they see “disability on disability’s own terms.” Carter-Long is the current communications director at the Berkeley-based Disability Rights Education & Defense Fund and heads their Disability and Media Alliance Project.
The 2016 short, “The Barber of Augusta,” is about a young man who had been diagnosed with ADHD and conduct disorder. Still, he finds his way to connect: he wears a superhero costume and harnesses his superpower of cutting hair, particularly for the homeless, on the streets of Toronto at night.
The avant-garde 2014 “Bastion” leaves the audience in almost a state of wonderment. A bald man had caught sight of himself in a shop window and, having decided he needed a haircut, gets a haircut from the barber inside and even pays him for the cut.
Panel moderator and Superfest coordinator, Emily Beitiks, explained that “Bastion” had opened as an installation piece at an art gallery, where viewers sat in a barber chair in the middle of the room and watched the film playing in surround sound. What made it exciting for Superfest was this film short’s stealth approach to including disability by taking a nuanced perspective. The lead character is played by an autistic, though disability never entered the conversations around the movie at any of the mainstream festivals where it was screened.
The next animated 2014 short, “The Chili Story,” was directed by Patty Berne, co-founder of the Bay Area-based Sins Invalid project, which focuses on disability justice in the performing arts. The short itself is a humorous and ironic take on taboos both inside and outside of disability.
The 2015 “The Right to be Rescued,” set in the aftermath of Hurricane Katrina, highlights the dire need for cities to include the needs of people with disabilities in their disaster management plans. One such heartbreaking story is the late Benilda Caixeta, a wheelchair user with muscular dystrophy, abandoned by her driver, who tells her, “I can’t come and get you, I’ve got my own family to worry about.” Her friend narrates how their phone conversation is cut short as flood water from the broken levees rushes into Caixeta’s home.
The final short was the 2012 “Everything is possible.” It follows Agustine, a Honduran wheelchair user due to childhood polio, who had been painstakingly building a helicopter, piece by piece, from scrap material since 1958. Reactions to him range from admiration to derision even as people around him say his task is impossible.
The panel discussion then turned to the recent momentum of disability now becoming part of mainstream film in a way it had not been previously. Panelist Ajani Murray, who is both an actor and public speaker, felt that this was because the world had become smaller. With streaming services and social media such as YouTube, artists did not have to go through big studios and television anymore. As Carter-Long remarked, “You can’t put the genie back in the bottle now... (People are) getting hip to the idea there’s always been a disability history, there’s always been disability culture. And they are starting to wonder why they didn’t know about it.”
In response to an audience question on how to close the gap and educate the world, Murray explained that while policy and law can be hard to understand, art is “understandable and palpable.” Cater-Long added that artistic mediums are a good way to sensitize people by getting to their heart first before getting into laws.
The panelists also had advice for aspiring filmmakers in the audience. Screenwriter Matthew Alazic urged filmmakers to “create content and put it out there. Take advantage of the fact that the ability to record content is in everyone’s pocket now.” Murray stressed the importance of community and networking in order to do so, while Carter-Long left the audience members with this assurance: “There is a history and a lineage and a community out here that’s got your back.”
My article in the Daily Cal on SuperFest's film shorts screening event, and discussion on the increasing visibility of disability in mainstream cinema.
Superfest, the world’s longest disability film festival, continued its ADA-30 celebration with Disability Pride Philadelphia by screening film shorts that provide a no-holds-barred glimpse into the diversity of disability.The screening on July 10 was followed by a panel discussion of the films’ impact in the current landscape and the growing momentum of disability visibility in mainstream film.
Now celebrating 20 years, the first film short, “Disability Culture Rap,” was the creation of the late Cheryl Marie Wade, a cultural arts poet performer, disability rights activist and UC Berkeley alumna. Even as the powerful words of the lilting rap sweeps the audience through the disability rights movement — of which many campus alumni have played a huge role — a diverse range of disability voices unapologetically enlighten the audience on disability culture: “It's about who we are...Its about power...it's about freedom!!”
As panelist Lawrence Carter-Long remarked, most media around disability seems to beg to be included and accepted, but “Disability Culture Rap” gets in the audience’s face and demands that they see “disability on disability’s own terms.” Carter-Long is the current communications director at the Berkeley-based Disability Rights Education & Defense Fund and heads their Disability and Media Alliance Project.
The 2016 short, “The Barber of Augusta,” is about a young man who had been diagnosed with ADHD and conduct disorder. Still, he finds his way to connect: he wears a superhero costume and harnesses his superpower of cutting hair, particularly for the homeless, on the streets of Toronto at night.
The avant-garde 2014 “Bastion” leaves the audience in almost a state of wonderment. A bald man had caught sight of himself in a shop window and, having decided he needed a haircut, gets a haircut from the barber inside and even pays him for the cut.
Panel moderator and Superfest coordinator, Emily Beitiks, explained that “Bastion” had opened as an installation piece at an art gallery, where viewers sat in a barber chair in the middle of the room and watched the film playing in surround sound. What made it exciting for Superfest was this film short’s stealth approach to including disability by taking a nuanced perspective. The lead character is played by an autistic, though disability never entered the conversations around the movie at any of the mainstream festivals where it was screened.
The next animated 2014 short, “The Chili Story,” was directed by Patty Berne, co-founder of the Bay Area-based Sins Invalid project, which focuses on disability justice in the performing arts. The short itself is a humorous and ironic take on taboos both inside and outside of disability.
The 2015 “The Right to be Rescued,” set in the aftermath of Hurricane Katrina, highlights the dire need for cities to include the needs of people with disabilities in their disaster management plans. One such heartbreaking story is the late Benilda Caixeta, a wheelchair user with muscular dystrophy, abandoned by her driver, who tells her, “I can’t come and get you, I’ve got my own family to worry about.” Her friend narrates how their phone conversation is cut short as flood water from the broken levees rushes into Caixeta’s home.
The final short was the 2012 “Everything is possible.” It follows Agustine, a Honduran wheelchair user due to childhood polio, who had been painstakingly building a helicopter, piece by piece, from scrap material since 1958. Reactions to him range from admiration to derision even as people around him say his task is impossible.
The panel discussion then turned to the recent momentum of disability now becoming part of mainstream film in a way it had not been previously. Panelist Ajani Murray, who is both an actor and public speaker, felt that this was because the world had become smaller. With streaming services and social media such as YouTube, artists did not have to go through big studios and television anymore. As Carter-Long remarked, “You can’t put the genie back in the bottle now... (People are) getting hip to the idea there’s always been a disability history, there’s always been disability culture. And they are starting to wonder why they didn’t know about it.”
In response to an audience question on how to close the gap and educate the world, Murray explained that while policy and law can be hard to understand, art is “understandable and palpable.” Cater-Long added that artistic mediums are a good way to sensitize people by getting to their heart first before getting into laws.
The panelists also had advice for aspiring filmmakers in the audience. Screenwriter Matthew Alazic urged filmmakers to “create content and put it out there. Take advantage of the fact that the ability to record content is in everyone’s pocket now.” Murray stressed the importance of community and networking in order to do so, while Carter-Long left the audience members with this assurance: “There is a history and a lineage and a community out here that’s got your back.”
The Myth of Bodies that are Normal vs DIsposable.
The Myth of bodies that are "Normal" vs "Disposable" !!
My article on the documentary film ‘Fixed’ panel discussion that asks why some bodies are considered ‘disposable’. Part of Superfest's #NoBodyIsDisposible
Documentary film ‘Fixed’ panel discussion asks why some bodies are considered ‘disposable’
Superfest, the longest-running disability film festival in the world, screened the first of its #NoBodyIsDisposable film series June 18, Regan Brashear’s documentary “Fixed: The Science/Fiction of Human Enhancement.”
“Fixed” provides thought-provoking insight into the social and bioethical questions around the use of enhancement technologies. On the surface, there seem to be immense benefits to these technologies (such as bionic limbs and exoskeletons), which can significantly improve a disabled person’s quality of life.
At the same time, the film raises fundamental questions about accessibility and affordability. Who gets to decide what is “normal” when it comes to the human body? As research and technology continue to evolve, won’t the idea of “normal” itself become a moving target? The “normal” body of today could well be the disabled body of tomorrow. And when do we cross the line on using therapeutic technology to help, versus enhancing human ability or even creating a class of super humans, a sort of “better than well”?
The film also posits that ableism and cosmetic surgery are eerily similar — for both, you need to change your body in order to fit in. The film is quick to point out that, from a disability rights perspective, the problem is not the body itself but the social disregard and lack of integration for that kind of body by society.
The film screening was followed by a panel discussion with prominent disability justice activists on how race, disability and size influence which types of bodies are considered “disposable,” especially in light of recent events such as the pandemic, or protests concerning police brutality.
Panel moderator Nikki Brown-Booker, the program officer for Borealis Philanthropy, started with an observation on the prioritization of spending for expensive enhancement technologies, even as there was a shortage of personal protective equipment earlier this year and a lack of community programs to keep people with disabilities out of institutions.
Panelist Valerie Novack, board president of the Partnership for Inclusive Disaster Strategies, drew attention to the countrywide systemic racial inequalities exposed in recent times. Novack felt that many people automatically assumed that they were safe from COVID-19, while old and disabled bodies were deemed “disposable.” Novack also noted the disproportionate amount of Black people in Chicago who have died from the coronavirus, highlighting the common thread with racial inequalities.
The second panelist was Max Airborne of the NoBody is Disposable coalition, which has intersected fat people, disabled people, older people and people of color. Airborne highlighted that when COVID-19 hit, states started forming triage guidelines for hospitals, which specifically disadvantaged fat people, old people and disabled people from getting care. Airborne added that the language of comorbidities often disguises this denial of care.
In addition, though the connection is not obvious, Airborne stressed that it is important to understand that anti-fatness can actually be a smoke screen or loophole for anti-Black racism. This is because fat and disabled people both exist in higher ratios in Black and Indigenous communities. Airborne cited scholar Sabrina Strings’ work, which concludes that fat-hatred emerged as a function of anti-Blackness and that European colonists did not want white people to develop “Indigenous” bodies. The norm had to be close to whiteness, thinness, youth and health, according to Airborne.
Silvia Yee, attorney at the Berkeley-based Disability Rights Education and Defense Fund, spoke of the profound ways in which law and social change interact. She said laws are important because they allow us to incorporate our collective social values into what the law says. Yee pointed to the recent ruling by the U.S. Supreme Court protecting LGBTQ+ employees from workplace discrimination; she noted that a possible factor behind this decision was the fact that the justices live in a world where 82% of the public supports LGBTQ+ civil rights protections.
Yee added that while law and social change can inhibit each other, they can also bring to life certain ideals of the people who live in the society and who have a different vision of the world: a world not ruled by inequality or stereotypes of the worth of an individual.
Superfest, the longest-running disability film festival in the world, screened the first of its #NoBodyIsDisposable film series June 18, Regan Brashear’s documentary “Fixed: The Science/Fiction of Human Enhancement.”
“Fixed” provides thought-provoking insight into the social and bioethical questions around the use of enhancement technologies. On the surface, there seem to be immense benefits to these technologies (such as bionic limbs and exoskeletons), which can significantly improve a disabled person’s quality of life.
At the same time, the film raises fundamental questions about accessibility and affordability. Who gets to decide what is “normal” when it comes to the human body? As research and technology continue to evolve, won’t the idea of “normal” itself become a moving target? The “normal” body of today could well be the disabled body of tomorrow. And when do we cross the line on using therapeutic technology to help, versus enhancing human ability or even creating a class of super humans, a sort of “better than well”?
The film also posits that ableism and cosmetic surgery are eerily similar — for both, you need to change your body in order to fit in. The film is quick to point out that, from a disability rights perspective, the problem is not the body itself but the social disregard and lack of integration for that kind of body by society.
The film screening was followed by a panel discussion with prominent disability justice activists on how race, disability and size influence which types of bodies are considered “disposable,” especially in light of recent events such as the pandemic, or protests concerning police brutality.
Panel moderator Nikki Brown-Booker, the program officer for Borealis Philanthropy, started with an observation on the prioritization of spending for expensive enhancement technologies, even as there was a shortage of personal protective equipment earlier this year and a lack of community programs to keep people with disabilities out of institutions.
Panelist Valerie Novack, board president of the Partnership for Inclusive Disaster Strategies, drew attention to the countrywide systemic racial inequalities exposed in recent times. Novack felt that many people automatically assumed that they were safe from COVID-19, while old and disabled bodies were deemed “disposable.” Novack also noted the disproportionate amount of Black people in Chicago who have died from the coronavirus, highlighting the common thread with racial inequalities.
The second panelist was Max Airborne of the NoBody is Disposable coalition, which has intersected fat people, disabled people, older people and people of color. Airborne highlighted that when COVID-19 hit, states started forming triage guidelines for hospitals, which specifically disadvantaged fat people, old people and disabled people from getting care. Airborne added that the language of comorbidities often disguises this denial of care.
In addition, though the connection is not obvious, Airborne stressed that it is important to understand that anti-fatness can actually be a smoke screen or loophole for anti-Black racism. This is because fat and disabled people both exist in higher ratios in Black and Indigenous communities. Airborne cited scholar Sabrina Strings’ work, which concludes that fat-hatred emerged as a function of anti-Blackness and that European colonists did not want white people to develop “Indigenous” bodies. The norm had to be close to whiteness, thinness, youth and health, according to Airborne.
Silvia Yee, attorney at the Berkeley-based Disability Rights Education and Defense Fund, spoke of the profound ways in which law and social change interact. She said laws are important because they allow us to incorporate our collective social values into what the law says. Yee pointed to the recent ruling by the U.S. Supreme Court protecting LGBTQ+ employees from workplace discrimination; she noted that a possible factor behind this decision was the fact that the justices live in a world where 82% of the public supports LGBTQ+ civil rights protections.
Yee added that while law and social change can inhibit each other, they can also bring to life certain ideals of the people who live in the society and who have a different vision of the world: a world not ruled by inequality or stereotypes of the worth of an individual.
The Faces of Autism
If you meet one person with autism, you have met just one person with autism. The same diagnosis can have a thousand faces.
This is the last of my series of 10 articles for my weekly opinion column "The Person Inside" for the Daily Californian.
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The faces of autism
It’s serendipitous that my last column falls in April, which just happens to be Autism Awareness Month.
It’s promising to see events that raise awareness about autism, such as the annual 3K walk organized by Spectrum: Autism at Cal. But despite these causes, there is still a lot of confusion surrounding this diagnosis. And as a young autistic, I’ve faced a mess of this autism confusion.
UC Berkeley’s Disabled Students’ Program has a weekly social group for autistics. I’m slowly trying to type on my iPad and keep up with the much quicker conversational flow of some of my fellow autistics. On many fronts, their issues seem quite different from mine. We all have the same diagnosis, but we are so different from one another — it makes me wonder how all of us can expect to have similar experiences.
Autism is a huge spectrum. At one end of the spectrum are the very verbal and very functional autistics, to the point where they are almost indistinguishable from their typical peers. At the other end are those who are severely affected by social language ability, intellectual ability and functional skills.
Then there are the gifted savants — the autistic geniuses. These are people such as Stephen Wiltshire, who can reproduce entire cityscapes after just seeing them for a few minutes from the air.
As a result, autism has become highly romanticized. Autistics are thought to be geniuses like Albert Einstein and Isaac Newton. In our technological age, the leading stereotype of the autistic is the socially awkward but wealthy Silicon Valley techie, which is a far cry from the remaining thousands.
There are also a bunch of comorbidities that many of us autistics have, such as attention deficit hyperactivity disorder, obsessive compulsive disorder, bipolar disorder, sensory dysregulation and anxiety. Any combination of these disorders can make our experiences all the more different from other people on the autism spectrum.
When it comes to the college-going, nonverbal, typer-communicating autistics such as David Teplitz and me, the diagnosis just gets “curiouser and curiouser,” as Lewis Carroll’s Alice would say. We are developmentally all over the place in almost every aspect of our lives. So where do we fit in on this giant spectrum?
I’ve found that this confusion or misunderstanding of autism means that people don’t know what to do with us or how to act around us. Autism is kind of like the elephant in the room. The reaction is sometimes a nervous, “Oh, I’m sorry you have autism,” which does not make for a good conversation starter. As a result, many autistics choose not to divulge their diagnosis if their symptoms are mild or not obvious. It’s just too difficult.
This confusion has also led some people to misuse the autism label in everyday life. The character of Larry David in the TV series “Curb Your Enthusiasm” lies about having Asperger’s (which is now included in autism) to excuse his rude behavior to his peers. But such false impersonations are a real disservice to the autistic community.
There are very real societal consequences as a result of this very broad spectrum. We are thrown into this big bucket of autism, but it’s almost impossible to arrive at a one-size-fits-all solution. Treatment options are all the more difficult and complex because each autistic is different.
The irony of this huge bucket is that even medical doctors are confused and attribute treatable causes to autism. When I got agitated in my pediatrician’s office as a child, she assumed that it was because of autism and called for the ambulance to sedate me. Luckily, the emergency doctor thought to check my ear and realized that I actually had an ear infection.
Community support can be hard to access as well. Programs seem to have specific profiles of autism in mind and often prefer the easier cases. As a result, families and individuals with more significant challenges may face a dearth of support staff and services.
Thankfully, there is a lot of research being done on the biology of autism. While there has been some success, the road to applicable and specific solutions is a long way away.
In the meantime, we on the spectrum muddle our way through life and hold our collective breath, waiting for those breakthroughs that we desperately need.
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