The question is how do we sustain the gain in employment seen during the pandemic due to hybrid work.
Showing posts with label Social Issues. Show all posts
Showing posts with label Social Issues. Show all posts
Historic gains in disabled employment during the pandemic.
"The increase in work-from-home arrangements and greater flexibility in work hours seen during the height of the pandemic may have permanently opened new employment opportunities for people with disabilities"
Thank you Lois Curtis
Today Lois Curtis passed away. She along with Elaine Wilson were the plaintiffs in the landmark 1999 Olmstead v. L.C case, which jumpstarted de-segregation and de-institutionalization of the disabled. It paved the way for community based supports for the disabled.
Over the summer I also had the opportunity to be part of a White House panel discussion on the occasion of the anniversary of the Olmstead Act. The Olmstead Act is more significant than we can even think. Imagine, just a few decades ago, people with more significant disabilities (which would have included "higher-support" autistics like me) were simply put into institutions.
Problem solved for society with the disabled tucked out of sight!! Case closed!!
In fact, when I was young, families were still being advised to send their autistic child away before they grew too attached to that child.
Folks like Lois did not get to choose. She had to fight to get out of an institution.
What if you did not even have a "voice" (like many "higher-support" autistics) to protest even as your family was told that this was what was "best" for you by all the "well-meaning" professionals.
Thank you Lois for speaking up.
As a child I don't think I quite understood what institutions were. The closest I came to seeing a visual was was whatever was shown briefly in the movie, Rainman.
It was not until I got into college and began my Disability Studies courses, that I began to understand how horrifying institutions and the idea of institutionalization was for the disabled. My very first disability studies course had been with Victor Pineda.
On the very first day of class he screened a documentary called "Lives Worth Living" on the disability rights movement. One of the most shocking and horrifying scenes in that documentary had been Willowbrook, one such institution in New York housing the disabled. It showed the disabled children living in degrading and filthy conditions. The doctors at Willowbrook themselves had grown so alarmed that they had invited reporter Geraldo Rivera's to do an expose which shocked the world.
I used to think my low expectation special education classrooms were degrading enough, but I shudder to think of what living in those inhumane institutions would have been like. In fact, in the 2020 documentary Crip Camp, there is a mention of a camper from Willowbrook "who would stuff himself with food till he got sick" as he would not get adequate food at Willowbrook.
Such history makes the Olmstead Act all that more significant, and meaningful to folks like me.
"The Olmstead decision has led the government to make more opportunities for people with disabilities to get services outside of institutions. Advocates and the government use the Olmstead decision to fight for disabled students’ rights to learn in the same classroom as non-disabled students. Advocates and the government use Olmstead to fight for disabled workers’ rights to work in the same workplace as non-disabled workers, and earn a competitive wage." (ASAN Remembers Lois Curtis)
Though we still have miles to go on disability rights on multiple fronts, I am so deeply appreciative of such disability rights icons who have hewn out the path that many of us now almost take for granted.
Thank you Lois
@harisri108 #Redefine_the_Table #autism #belonging #disabilityrights
Doomscrolling
Came across a new term, rather a term that's been around for a while.
Doomscrolling is the act of compulsively scrolling through negative news or social media feeds, often for hours at a time, despite feeling upset or stressed by the content. The term "doomscrolling" gained popularity during the COVID-19 pandemic, as people spent more time online and were inundated with a constant stream of alarming news about the virus and its effects. This behavior can lead to feelings of anxiety, hopelessness, and helplessness, as well as difficulty sleeping and concentrating
So it became this "vicious cycle in which users find themselves get stuck in a pattern of seeking negative information no matter how bad the news is."
It does not help that, online/social media algorithms are designed to feed us "attention-capturing" information and give us more of whatever we had clicked on. The result was a newsfeed of endless doom, which could trigger more compulsive scrolling behavior.
The disabled/autistic are equally vulnerable to these influences, further compounding our mental health issues.
Here is a research paper on this.
Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing
Satici SA, Gocet Tekin E, Deniz ME, Satici B. Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing. Appl Res Qual Life. 2022 Oct 19:1-15. doi: 10.1007/s11482-022-10110-7. Epub ahead of print. PMID: 36275044; PMCID: PMC9580444.
Satici SA, Gocet Tekin E, Deniz ME, Satici B. Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing. Appl Res Qual Life. 2022 Oct 19:1-15. doi: 10.1007/s11482-022-10110-7. Epub ahead of print. PMID: 36275044; PMCID: PMC9580444.
Friendships in Autism Adulthood.
"In 1990, only 3 percent of Americans said they had no close friends; in 2021, nearly 12 percent said the same. The United States is in the grips of a loneliness crisis that predates the Covid pandemic."
https://www.nytimes.com/2022/10/01/well/live/how-to-make-friends-adult.html
If this is state for NTs, imagine the situation for autistics who generally have little - no friends through childhood.
However, some of the suggested ways to making friends is hardly the easiest for autistics either - "You really have to try and put yourself out there."So it's a continued conundrum.
Autistic Burnout
What is it?
Autistic burnout can affect the ability to function in daily life, and may be accompanied by symptoms such as depression, meltdowns, anxiety, and executive dysfunction.
Causes
It is a result of prolonged exposure to stressors, such as sensory overload, social demands, and other challenges.
Nothing to say, an afterthought puzzling oddity.
Nothing to say, an afterthought puzzling oddity.
Last week I won a prestigious fellowship for grad school with an alum that boasts students from elite schools across the US. It is a honor indeed to be recognized and selected and I am so over the top.
In the cohort of 30 fellows, four Indian-American students won the fellowship which was mentioned in a few Indian newspapers as well.
What I want to highlight is one specific Indian newspaper (not mentioning names here). There was plenty to say on the accomplishments of the other 3 non-disabled Indian-American students who are indeed quite accomplished. I am in deep admiration of their accomplishments.
However, when it came down to talking about me, it was like they were puzzled as to what to say around what my accomplishments were (if any). Other than Berkeley, graduating, disabled. I don't fit into their standard stereotype of the newsworthy nondisabled Indian-American student that makes it into a top school and probably has a dozen inventions or patents along the way. If I had been a nondisabled student helping the "usual objects of pity" disabled community with some invention, well that would have been newsworthy. It was like they were were struggling to write about this puzzling oddity of a disabled Indian student, who did not quite belong in their column, but would look bad for them if they left out altogether.
The sad sad irony in all this is that this is a Bay Area paper. I was born and have lived in the Bay Area all my life.
The point here is not my wanting more lines of mention around any accomplishment in an Indian newspaper. It's the feeling of being placed in the "other" group, of feeling that I don't "belong" in my own ethnic community. I felt quite sad.
Should I be surprised? After all, growing up, I've pretty much been ignored and not included by the nondisabled Indian kids who lived on my street in a South Bay neighborhood dominated by Indian and Chinese kids. We lived on the same street but in different Marvel multiverses. I simply did not exist in their world. They did grace my doorstep exactly once a year, at Halloween, arms outstretched for their share of candy. Understandably, Halloween is my least favorite holiday as it is a painful reminder of non-inclusion.
And lets not forget, in the not so distant past of 2015, the Gopal family in Sunnyvale had been sued by their neighbors and forced to move - one of the reasons being an autistic kid on the street reduced property values in the high priced Silicon Valley neighborhood.
Of course I cannot generalize my entire community - There are exceptions and I am so appreciative of those "gems" who crossed paths with me.
The point again of this whole piece- media representation matters. Else the stigma around disability will just continue from one generation to the next.
Think about it. Given that autism is the fastest growing neuro-developmental disability of today, it is highly likely that a near and dear one of yours will have autism sometime in the near future. Is stigma and exclusion really what you want for that person you care about?
Inclusion and reduction of stigma does not have to be an unattainable illusion.
It can be a reality. Let's start on that today.
Critical Disability Studies
Critical disability studies is an interdisciplinary field of study that explores the social, cultural, historical, political, and economic dimensions of disability. It applies critical theories to explore how disability is constructed, experienced, and represented in society.
The field aims to challenge dominant norms, power structures, and ableism while advocating for social justice, inclusion, and the rights of disabled individuals. It explores topics such as disability identity, accessibility, discrimination, intersectionality, and the social and political implications of disability
Dont Cant Wont - Masking Camouflaging
Don't Can't Won't - Masking Camouflaging
Autistics engage in Masking
Autistics engage in Camouflaging
Attempts at passing muster, appear more "normal", make eye contact
........Effortful
........All verily exhausting
........ Very very exhausting
Contributors to Autistic Burnout.
Meltdowns and Autistic Burnout
Burnout, Burnout.
BUT, NonSpeaking Autistics
... Don't possibly Mask
... Can't possibly Camouflage
Why it is quite certain that Nonspeakers
....Won't experience Burnout.
ONLY Meltdowns, but NOT Burnout!
They don't, they can't, they won't
Déjà vu
...Don't
...Can't
...Won't
...Not Possible, No agency!!
Sorrowful words oft heard before
Ableist terminology. Disappointing!!
Reality!!
We struggle as all autistics do
Attempts at masking and camouflaging
Sometimes it works, we pass muster
Other times, its a Partial No-Go
maybe even a Total "Oh-No!!"
Masking and Camouflaging
Walk without stares in society
No one likes to be gawked at
Fly under the radar is often the goal.
Fly under the radar is often the goal.
Basic self-safety oft at stake
Sprinkle on apraxia and comorbidities
the result
....variable & unreliable steering controls.
The body, a car with a loose steering wheel
unpredictable in the way it will go.
Effort required multiplied, magnified.
Autistic Burnout
Burnout Burnout Burnout
Burnout Burnout
Burnout
Related Posts
Masking & Camouflaging.
https://uniquelyhari.blogspot.com/2021/09/cm.html
Triple Bind and Masking in Autistic Females
https://uniquelyhari.blogspot.com/2021/04/triple-bind-masking.html
Masking as an evolutionary advantage
https://uniquelyhari.blogspot.com/2020/04/masking-as-evolutionary-advantage.html
CAT-Q measure to measure camouflaging in autistic females.
https://uniquelyhari.blogspot.com/2021/04/cat-q-measure-to-measure-camouflaging.html
Dont Cant Wont - Masking Camouflaging
https://uniquelyhari.blogspot.com/2021/05/dcw.html
Where do the Autistic Crips Go?
In a few months, the California wildfires will be back.
We don't realize how much more disabling the climate change is for the disabled
Where Do the Autistic Crips Go?
I’m an autistic crip with sensory disabilities.
One of my many labels, too many to recount.
Crips are not priority when natural disaster strikes.
2005
... Katrina Disabled abandoned by caretakers
2018
...Paradise CampFire, more of the same.
We are ever the forgotten, not-accounted-for divergents.
September 2020,
...Bay Area Skies glowed red
Nuclear orange sky from countless wildfires.
Evacuations were abound even with Covid around.
It just was not safe to social distance at home.
An autistic crip, I will just call him Zee
Wildfires by his home, the air not fit to breathe.
He had legs to walk out, his was a different disability
But where would Zee go, evacuation is hardly easy
A shelter was not a place he could hang out.
Sensory sensitivities, food allergies, social anxiety, compromised immunity.
…. On top of sheer uncertainty.
Where oh, where can autistic crips go?
Shelters are planned for the non-crip mindbody
Smoked filled air, but my home not in path of fire
Zee came, stayed a few days with me.
It was not easy but it was better than a shelter.
Zee had a place to go for this round of emergency
The fires came close but his home did not catch fire.
He was able to go back to his own home eventually
But where did the other autistic crips go?
Where will I go if this happens to me?
Next year,
... the wildfires will be back.
Prepare and plan, says the authority?
Pack a bag with all that you need.
But...
How do you prepare for something like this?
How does one prepare sensory sensitivities and anxiety?
Frist Center Webinar on Media Representation
Program Information: https://engineering.vanderbilt.edu/news/2021/frist-center-for-autism-and-innovation-to-discuss-autism-and-disability-representation-on-screen-march-30/
Recording at: https://www.youtube.
Recording at: https://www.youtube.
My Responses
Introduction
I’m Hari. I used the He, Him pronouns. I'm a minimally speaking autistic. I was diagnosed at age 3 and my autism is very very visible which presents its own set of issues. At U C Berkeley, I’m a major in Psychology and minor in disability studies. Incidentally I notice my co-panelists have ADHD and I actually have that formal diagnosis too. The doctor pretty much gave me a dual diagnosis that time itself. I have so many things going on as well like oral motor apraxia, body schema, sensory regulation, social anxiety etc.
I’m currently visiting my grandpa in India so this is a new workspace for me with a big light just behind me. Hopefully you all can see me.
I am many things I think, scholar, writer, activist, philosopher, and poet. I’m a student journalist at the Daily Californian, research assistant at the Psychology labs and the UC Berkeley Disability lab which is this unique makerspace lab. This is my fifth semester as a student instructor for a semester long class on autism. I’m the first non speaking autistic president of Spectrum At Cal, which is the student campus org for autism. I am on the ASAN board, and Council of Autistic Advisors for Autism Society of America. I'm involved in a number of other parallel projects from academic to policy. And I do a lot of creative writing including maybe around 200 poems.
Why am I here today?
So i wrote this really long article for Alice Wong’s disability visibility project in Feb on this very topic which got a lot of coverage. So I have a strong feeling that’s why I am on this panel today. LOL
Examples of representation you have grown up with.
I think at the time of my diagnosis, my folks were asked if they had seen Rain Man to acquaint them with what autism even was. So I overheard about Rain Man a lot when I was young. Others I can think of outside of documentaries and in the fiction arena are Forrest Gump, What’s Eating Gilbert Grape, I am Sam, Big Bang Theory, Imitation Game, and the Good Doctor. Of late there has been Pixar’s loop, The Accountant etc. And I recently saw Pixar’s Float which while it does not say autism, so spoke to me.
To address what you said Claire earlier about some show characters not given a formal diagnosis is probably intentional as then the writers don’t have to feel like they are boxed into what the character is allowed to do.
On Representation
On representation, There are 2 parts to representation that Judy Heumann talks about in her white paper for the Ford Foundation. If you haven’t read it, I would highly recommend it. So it's both authentic representation and positive representation. So let's break that down.
Let's talk about the positive representation part first and I will give you four examples.
A classic example is that most stories with a non speaker almost always are about the non speaking autistic having a meltdown as that is sensational and provides lots of drama, trauma, and entertainment value. My question is surely there is more to the non speaking individual than a series of tantrums. This is the case in Sia’s movie too. There are multiple times where the character of Music has meltdowns and people even sit on her as that is how they get to control her. So what is the message being transmitted about non speaking autistics to the community? That they are some sort of wild beasts to be controlled, to be sat on.
The second of course is the use of restraints. When a movie gets a Golden Globe nomination, it is bound to get even wider viewership which means that the use of restraints gets normalized in the public psyche and in one swift move over turns decades of advocacy against the use of restraints. It is reminiscent of the residential Judge Rotenburg Center where GED devices, which deliver electric shocks, were routinely as aversives in behavior therapy. After decades of advocacy by organizations like ASAN, congress finally got on board to urge F Dee yay to finalize its rule on banning these electric shock devices. 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. Currently there is little accountability or reporting and it makes the news only when someone dies. So there is still much work to be done. Movies like Music are a major setback to such advocacy efforts.
The third is the fact that the 90 journalists who make up the Hollywood Foreign Press Association, the ones that get to nominate the Golden Globes, thought it was perfectly ok to nominate Sia’s movie. No one talks about this but if you think about it, they are partners in crime and need to be held accountable too. Their action in nominating this movie directly amplifies such negative messaging.
Another disturbing messaging I am finding in all the movies, is to send autistics away to a facility which in my mind translates to institutions. What I found most disturbing in the movie Rain Man was the ending where the implication was that he is better off at an institution than living in the community. In the good doctor, I think it was in season 2, there is an episode where the character of Dr Shaun Murphy tells the parent she needs to send her autistic son away and he would get used to it just as Shaun had as a foster child. That analogy did not even make sense and seemed rather cruel to advise parents to send their kids away. Sia too wants to keep sending Music off to a facility, finally puts her in a facility, then takes her back to show character growth on Sia’s part etc. Overall the messaging is that a majority of autistics need to be tucked out of sight of society and out of mind of society at the earliest possible time, unless they have learned to so camouflage and mask their autism, that they can pass muster and be allowed to live in society.
We talked about positive representation so far. Let's come to authentic representation. Again a couple of things to consider here. One of course is that one that has received the widest publicity of late which 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.
But if we dig deeper it also means that non-speaking characters, like in Sia’s movie, need to be played by non speaking autistic actors and not just by any autistic actor. Else that is not really an authentic representation for someone like me. Therein lies the challenge as there are not really enough non speaking autistics around. And why is that. We go back to all the tragedy of systemic discrimination and gatekeeping that is keeping them out of education and other opportunities and most are headed for facilities where they are out of sight and out of mind of society.
This is where positive representation again loops back in. Positive representation goes a long way to normalizing what is acceptable in society and can reduce stigma and gatekeeping. Then we will truly see both authentic and positive representations across the spectrum.
The future of Disability; will it get better?
Yes it will get better and we have to work towards it.
We have to create more and more noise, consistently and frequently as public memory is very short and fickle.
You know I never used to hear about disability in India and this year. With all the free time during covid, I was watching their republic day parade this time. For the first time, they had a float for people with disabilities. So we have to keep chipping away.
And I want to quote the late John Lewis on this. "Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month, or a year, it is the struggle of a lifetime. Never, ever be afraid to make some noise and get in good trouble, necessary trouble."
Reflections on Societal Stereotyping
So I had a veg La Ratatouille dish for lunch yesterday.
I've been curious about this dish ever since the Pixar movie from childhood. As I was munching, in my mind there was this imaginary "rat"-atouille in the corner of the table, hopping nervously on one foot and anxiously waiting to see if I (the food critic) like the dish. I wanted to assure "Rat"-atouille that the dish was as wholesome as imagined.
The movie had really caught my imagination as a child. There was this rat trying to overturn societal stereotypes as an outcast, a scavenger of society, someone to be avoided. It moves towards being recognized for its talent and the total opposite of societal perceptions.
The food critic being society that is so judgmental of disability or other marginalized groups. A part of us still anxiously waits for approval at every step though that should not be the case.
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!”
Found Objects in Nature
Found Objects in Nature
Is what we think of as"Natural/Nature" really all that Natural?
I have not one but 2 found objects that I want to bring up.
One is the Albany Bulb. It is this jutting piece of peninsula that hugs the Bay Trail in Albany, and a delightful place to hike. As you meander down the neck (the narrow part) to the actual roundish bulb at the end, you feel you are almost at an island out in the bay, with delightful view of the Bay Bridge on the one side and the Golden Gate Bridge and the hilly Marin county on the other. Sitting there, you can watch the poetry of the sun set over the silver ocean at dusk. Sometimes, you are granted the company of seagulls, ospreys and a falcon as you drink in the view.
One is the Albany Bulb. It is this jutting piece of peninsula that hugs the Bay Trail in Albany, and a delightful place to hike. As you meander down the neck (the narrow part) to the actual roundish bulb at the end, you feel you are almost at an island out in the bay, with delightful view of the Bay Bridge on the one side and the Golden Gate Bridge and the hilly Marin county on the other. Sitting there, you can watch the poetry of the sun set over the silver ocean at dusk. Sometimes, you are granted the company of seagulls, ospreys and a falcon as you drink in the view.
But like the Rocky Mountain Arsenal, the Albany Bulb is also the site of a former man-made landfill (till 1983) from construction sites including the nearby Golden Gate Fields Racetrack. The early history of the Bay Area not only meant deforestation of Oakland trees to construct much of San Francisco but also an attempt to fill the shallow Bay. Remains of construction concrete and rebar litter the ground of the bulb though now overgrown by non-native vegetation like acacias, broom, fennel and palm. It is also become a habitat for small wildlife like snakes, owls, hares and the like. But you can still seen rusted iron rods peering out of giant concrete slabs making for a footing that needs care.
From the 1990s it also became a place for the homeless, who faced periodic eviction by the city as their numbers grew. It has also been an artist mecca of sorts with interesting artwork littered around the bulb, many using the debris found on the bulb.
At the end of the day, the bulb is a manmade creation which has had significant impacts on the natural world around it, like altering bay currents. Yet it is now considered part of the natural setting of the East Bay Parks and Trails. It gives us a moment of pause as we reflect upon the fact that what we now think of as "natural" was in fact not natural at all but a manmade artifact.
The 2nd found object I have noticed for a long time now are the “Vista Points” that one sees along the freeways. There is some irony in that we have to create designated spaces so that we humans can take a break to enjoy nature. Have we altered nature so much that it is now has to be compartmentalized into our lives?
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Comments:
I love that you chose the Albany landfill and elude to its interesting recent local history. It's a place I have a longstanding relationship to and have observed so many changes with how the space is used by humans (and their dogs) over the years. It's the first place I remember seeing a shooting star in the city. So much of the bay's coastline is infill, something that has created disastrous effects to large earthquakes in the area...makes me think about the part of the Cronon piece that talked about the unnaturalness of "natural disasters."
I like how you mentioned that society must "create designated spaces so that we humans can take a break to enjoy nature". I can definitely relate to this. This statement made me realize that in every day actions society has normalized the fact that we must be grateful for being able to access local parks and preserves for enjoying nature and escaping our metropolis when in reality it is us humans that have taken away from nature to begin with.
I found your second object particularly interesting to me! It reminds me of parks/ gardens that exist in cities so that people can get away from the concrete/ constructed world and be in a more "natural" setting. I also thought about nature conservatories and zoos, which are literally here to conserve parts of nature that would otherwise be extinct due to human alteration of the world.
Thanks for sharing, Hari! I too enjoy walking around and enjoying the views at Albany bulb. It's so interesting to consider its history. It almost makes me feel guilty to be enjoying the space at the expense of unhoused people who were evicted. I also love how the bay, lingering debris, and art come together to produce a space that is not strictly natural or unnatural.
Making Decisions
On Making Decisions about what path to take
Thoughts to mull over!!
One is something that the abolitionist, Frederick Douglass had said about education and knowledge being the key to freedom. This had struck a deep chord when I first heard it. I felt I had to go to college, not just because I loved knowledge and learning, but a college degree would also give me better access to a seat at the table. The table, that is apparently making decisions about me and my fellow autistics.
The second is a line from Robert Frost’s, Two Tramps in Mud Time. “My object in living is to unite my avocation and my vocation.” I too, truly believe that you will be happiest, if your work aligns with what you are passionate about.
The third is that many people often end up doing something totally different than what they studied in college or imagined they would be doing. And that’s totally ok. You can act only based on your current information, you zig zag a bit, maybe loop a little too. I’ve started off with a Psych major here at UC Berkeley, but who knows what I will end up doing many years later.
-Hari Srinivasan @ ASAN - Transitions to Adulthood
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."
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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