#TwitterVoices - Twitter and the Disability Community
I was a Panelist at a memorable Twitter event to amplify disability voices & issues along with Leroy Moore, @AliceWong Jordyn Zimmerman Antoine Hunter @DaniellePerez Tinu Abayomi-Paul @DustinGibson @JohnnieJae Mark Travis Rivera Moderated by @GodIsRivera with "Tweeps" (Twitter employees) Q&A on accessibility@Twitter.
At every event I find myself learning more and more about issues faced by the disability community which motivates me some more to be part of that change we want to see. I get to both contribute and learn. And it was so nice to have Accessibility conversations with (rather than for) Disabled Folks.
#contributeandlearn #DisabilityAccess
My responses as their is no recording of the event.
- Who are you?
- What are you up to and how are you using Twitter to do it?
- What are key takeaways from your work, you want this group to know.
My response.
Thank
you Twitter. Hi everyone. I’m Hari Srinivasan. I'm a college
age male of Indian American origin with brown skin. He,pronoun. I have
short black hair, wearing a blue shirt with the word berkeley on it and a
cap with Go Bears on it. My current workspace has a blank blue wall
behind me.
I'm a non speaking autistic. I am on the ASAN board
and Council of Autistic Advisors for Autism Society. And coolest of all
for me, I was featured on President Obama’s Instagram on the occasion
of the 30th anniversary of the Americans with Disabilities Act.
At
U C Berkeley, I’m Phi Beta Kappa, major psychology. minor in disability
studies. This is my fifth semester as a student instructor for a
semester long class on autism which I enjoy so much. I just got selected
into the prestigious Haas Scholars at Berkeley and I will be using
Twitter to recruit participants for my research on autism.
I got
introduced to twitter when I joined the Daily Californian as a student
journalist. Many of my articles have centered around disability. My
article in the amazing Alice Wong’s Disability Visibility Project, with
excerpts in Listen, got quite a bit of coverage on twitter. Twitter
definitely helped amplify the message on media representation.
I help manage 3 other twitter accounts besides my personal one.
One twitter is that of the Berkeley Disabled Students which works on a lot of accessibility issues on campus.
Another
twitter is the UC Berkeley Disability Lab which is a unique maker space
lab hacking low cost accessibility solutions for the disability
community. I’m a research assistant and head Team Propaganda. Our
projects are directly based on input from the community.
A third
twitter is Spectrum At Cal and I'm its first non speaking autistic
president. We have harnessed the power of the virtual this academic year
to create virtual volunteering and several outreach events. In fact we
are rebranding from Autism Acceptance to Autistics Belong. A video
tweet by Doha Debates in December where I talk about Belonging got quite
a lot of coverage worldwide.
I am involved in a number of
parallel projects but I do find time for some light fun too including
writing poetry and connect with others through social media. LOL.
I
truly believe that social media like Twitter can be powerful tools in
spreading positive messaging and thus become game changers for our
community in terms of opportunity inclusion and belonging.
If
there is one key takeaway about what drives me and my work, it's my
dream and yearning towards Belonging for non speakers, for all
autistics, for all the disability community. I would like the audience
to think beyond Acceptance and Inclusion towards Belonging.
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."
Moz Fest 2021
I will Presenting at Mozilla Fest tomorrow
Friday Mar 12, 2:45-3:45pm PST.
Topic: Growth Mindset is a Shift of Perspective
Registration: https://www.mozillafestival.org/en/tickets/
its pay what you can starting at $0
Event Schedule: https://schedule.mozillafestival.org/schedule
A Day in the Life
This was an interview I gave for Zoom magazine.
Interview Text follows.
Hari Srinivasan is a minimally-speaking autistic advocate and college student at UC Berkeley, California. He works tirelessly as a student, research assistant, and teacher. He is a Psychology major with a minor in Disability Studies, and so far has a 4.0 GPA and is Phi Beta Kappa. At UC Berkeley, he teaches a class about autism, and this summer he will be starting an independent year-long research project on autism as a
Haas Scholar. Hari has a passion for learning about a variety of disabilities, as he feels it helps him understand autism better and gives him a broader perspective on the challenges that many people face.
Hari has been featured on President Obama’s Instagram to help celebrate the 30th anniversary of the ADA (Americans with Disabilities Act) and is a student journalist at the Daily Californian. He’s active on his college campus, even serving as the first nonspeaking autistic president of the student organization Spectrum At Cal, working to expand their outreach efforts and promoting “belonging” over mere “inclusion.” He also serves on the board of ASAN (Autistic Self-Advocacy Network), one of the few
organizations supported by the autistic community, and is a member of the Panel of People on the Spectrum of Autism Advisors (PSA) for the Autism Society of America.
1. What does a typical school/regular day look like for you (or, if there isn't a typical day, describe one that is representative of your life)?
A typical day during the pandemic is a lot of screen time, typing or in Zoom, interspersed with maybe a walk, some exercise, music, TV (more screen time), and staring at the view of the beautiful Bay and the Golden Gate bridge from my window.
2. What hobbies or interests do you have outside of your schooling or work?
Philosophy & creative writing, especially poetry. I have written over 200 poems. Yoga, music, watching football, basketball, cricket, & tennis (I’m learning tennis).
3. How does being autistic help or hinder your work, schooling, or hobbies?
A multi-modal thinking which uses all my senses, not just traditional audio-visual, can be a huge advantage as you are weaving in many streams of thought and consciousness.
The mind is a beauty with its ability to quickly grasp concepts, analyze, appreciate, and enjoy. It's a tremendous advantage to have this mind as I have to spend a majority of the time on the motor output part. For instance, in Calculus the instructor was writing out all the steps on the board. Even as he started, I had the answer, though if someone had asked me to type out all the steps, that would have taken me quite a long time as that is a motor task. I often feel I am on two complete opposite tracks with my mind and body.
The mind is a beauty with its ability to quickly grasp concepts, analyze, appreciate, and enjoy. It's a tremendous advantage to have this mind as I have to spend a majority of the time on the motor output part. For instance, in Calculus the instructor was writing out all the steps on the board. Even as he started, I had the answer, though if someone had asked me to type out all the steps, that would have taken me quite a long time as that is a motor task. I often feel I am on two complete opposite tracks with my mind and body.
If I have to do a motor task, I can get completely lost and disoriented and distracted even between point A and B. Honestly, that part is tremendously frustrating and drags me down and leads to all kinds of anxiety and more “autism behaviors” which further slows me down.
4. What kinds of changes or accommodations do you make in your life to allow
you to be successful?
I think I am still trying to figure this part out (LOL) as my needs go beyond just the communication part, which is hard in itself. I’m constantly having to look for workarounds for each and everything. It's the ADHD, oral-motor apraxia, anxiety, lack of body schema, sensory processing, fine motor issues, body coordination issues, obsessive compulsive behaviors, mood regulation, misc. health issues, allergies, etc.,
all in one package called Hari. There is only so much that goes into the disability accommodations which are very academic oriented. So each day is like a new negotiation with my environment which has been quite the task and frankly quite exhausting. Much of the time, I’m not really feeling all that successful and quite burned out as I am trying to navigate through my maze of a day, day after day.
5. Have you experienced discrimination or bullying because of your autism or autistic traits?
Oh yes, all the time. My disability and “autism behaviors” are all too obvious, much of it quite involuntary, though there are still attempts at masking and camouflaging in other areas. So I can get either completely ignored and excluded or stared at with uneasy or disapproving looks in many places. And that is just the tip of the iceberg. Many, many instances by educators, neighbors, programs, professionals, and just folk on the street.
6. What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?
6. What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?
No one is an expert on you. No one knows enough about autism to be an expert. Even
the “experts” are still learning. So no one gets to have final say on what your limitations,
capabilities, & needs are.
the “experts” are still learning. So no one gets to have final say on what your limitations,
capabilities, & needs are.
7. What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called "experts" do you think parents should ignore? How can parents best support their non-speaking or minimally-speaking children?
Communication must extend beyond just basic wants. Basic wants are just survival. The next step up are needs around school/vocational/skills/interests which are necessary for building self-confidence and getting ahead. But real quality of life is the ability to express thoughts and opinions. So aim for that in communication—irrespective of the communication methodology used and whether it’s via speaking or via AAC. On the “experts” part, I would repeat the advice to autistics above.
8. What was one piece of advice you received that helped you be comfortable with who you are?
“The human race is so puny compared to the universe that being disabled is not of much cosmic significance.” —Stephen Hawking
“The human race is so puny compared to the universe that being disabled is not of much cosmic significance.” —Stephen Hawking
9. How did growing up without feeling represented in media affect you?
OMG. That was the essence of my recent article titled “Boy Like Me” for the Disability Visibility Project.
OMG. That was the essence of my recent article titled “Boy Like Me” for the Disability Visibility Project.
10. How does being a minimally-speaking autistic person affect your experience in higher education and in your advocacy work?
College has been an amazing experience for me as I have found a very supportive environment and faculty in Berkeley. I don’t know if this is the case in other places though. But for all that I get to do, I realize my college experience will still be just a fraction of that of my NT [neurotypical] peers or even my speaking autistic peers.
11. What kinds of topics do you cover in the college course on autism that you teach?
11. What kinds of topics do you cover in the college course on autism that you teach?
So it's a combination of lectures, class discussion, student presentations, and guest speakers and panels. I manage to pack in a lot in our weekly 2-hour classes—from history, education, therapies, issues across lifespan (childhood - adulthood - geriatric), autism terminology, disability law, housing, relationships, family dynamics, identity, healthcare, mental health, translational research, law enforcement, tech, representation in media, and a bunch more. The 12-13 weeks of classes each semester are not enough to pack in all the additional topics I would like to cover. It felt so impactful when a former student from Europe recently emailed me to say that takeaways from this class led to her current research work.
12. As one of the board members, in what ways do you contribute to ASAN?
I think I both learn and bring fresh perspectives as a both a minimally-speaking autistic
and a person of color.
and a person of color.
13. What are some aspects of advocacy work that you find especially fulfilling?
It is the opportunity, that dream, to make a contribution, even if it's a pebble, that will lend to that huge ripple of change.
On a lighter note, I used to obsessively watch Thomas the Tank Engine as a kid. And Thomas always wanted to be a “useful” engine. I guess I’m being “useful” too, now.
LOL.
LOL.
14. What would you like to do—given your education, work, and advocacy background—after graduation?
In the immediate future I hope grad school is in the cards for me. I’m passionate about learning and knowledge, and my mind is just thinking all the time and I want to do and contribute so much.
15. How can readers learn more about the experiences of non-speaking or
minimally-speaking autistic people?
minimally-speaking autistic people?
Are there resources you'd like to point people to, or people online that you recommend following?
Just reading or following what a few of us are writing is not enough. Thought has to translate into action on the ground. Start by interacting with nonspeakers. There will be many in your neighborhood who are getting absolutely ignored or out of sight, tucked away in special education class or day programs. How will you learn unless you interact and start to include? Ask to start buddy programs at school if you are of school age. If a nonspeaker lives on your street, include them in your circle of friends and do things with
them. There are many small things you can do at the grassroots level which together will make a huge difference and normalize the presence of every kind of human being in everyday society.
Just reading or following what a few of us are writing is not enough. Thought has to translate into action on the ground. Start by interacting with nonspeakers. There will be many in your neighborhood who are getting absolutely ignored or out of sight, tucked away in special education class or day programs. How will you learn unless you interact and start to include? Ask to start buddy programs at school if you are of school age. If a nonspeaker lives on your street, include them in your circle of friends and do things with
them. There are many small things you can do at the grassroots level which together will make a huge difference and normalize the presence of every kind of human being in everyday society.
16. Is there anything else you'd like to share?
While it's nice to see neurodiversity make inroads both in terms of awareness and on the DEI [Diversity, Equity, and Inclusion] front, there needs to be a bigger effort to include the more marginalized groups like minimal/nonspeakers, and their support needs in such measures and conversations.
17. What are the best ways for people to connect with you (if desired—anything you include in this section will be published, so only include information you want public)? (Email, Twitter, Facebook, Instagram, etc.)
I have a bunch of media for interested folks. I write about many things.
Daily Californian: www.dailycal.org/author/haris/
Twitter/Instagram @harisri108
Facebook Page: 108hari
YouTube: tinyurl.com/108hari
Blog: http://uniquelyhari.blogspot.com
But more than FOLLOW, I want you to think ACTION.
Twitter/Instagram @harisri108
Facebook Page: 108hari
YouTube: tinyurl.com/108hari
Blog: http://uniquelyhari.blogspot.com
But more than FOLLOW, I want you to think ACTION.
This was part of the series.
Empowering a Future
I was the keynote speaker at the ABLE - South Carolina, a Center for Independent Living at their Annual conference. www.able-sc.org
Empowering a Future is a professional development opportunity for
educators and service providers working with youth with disabilities who
are transitioning to adulthood. This year’s conference will include all
the exciting sessions you’re used to – but in a user-friendly online
format! Want to learn how to motivate and empower your students? It’s
time to leave the deficits-based approaches behind and focus on new
strategies to build strong, successful self-advocates. Session content
will highlight virtual service delivery, supported decision-making,
pre-employment transition services, youth leadership, and much more. This event is made possible through a partnership with Able South
Carolina, South Carolina Department of Education, and Transition
Alliance of South Carolina (TASC).
Link to any potential recording will be posted if available.
Keynote - Empowering a Future
I was keynote speaker at Able-SC's Transition Conference
We are so excited for Hari Srinivasan to be our keynote speaker at Empowering a Future 2021! Teachers, service providers and counselors: learn directly from an autistic student and disability scholar about how to empower students with disabilities. Tickets: bit.ly/eaf2021
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/
Phi Beta Kappa
I got an invitation to join the UC Berkeley Chapter of Phi Beta Kappa, a very prestigious academic honor society pbk.org & pbk.berkeley.edu
As the email invite said on Mar 5 state:
"It is my pleasure to inform you that based on your exceptional academic record in Letters & Science, you have been invited to join the Phi Beta Kappa chapter at the University of California, Berkeley.
Phi
Beta Kappa is the premier academic honor society for L&S
undergraduates, and its members include seven of the nine U.S. Supreme
Court Justices as well as many UC Berkeley professors."
A mention in August Company
Crip Camp | President Barack Obama Moderates A Conversation on Disability Rights
with Disability Rights leaders and makers of Crip Camp movie.
And... I got a mention. Oh wow!! Oh wow!! A mention in August Company.
Atypical
.jpg)
In the context of autism, "atypical" refers to behaviors, traits, or abilities that deviate from those commonly observed in neurotypical (NT) individuals. These atypical behaviors can encompass a range of manifestations, including repetitive movements (stereotypies), challenges in social communication and interaction, sensory sensitivities, and intense, focused interests in specific topics.
======
Read more on Atypical: [PlainSpeak Version] [For the Academic/Scientific Audience], [A Simple Definition]
A Bingo Surprise
The team at NeuroNav had a birthday surprise for at the Team Meeting today.
it was "Hari Bingo"
Subscribe to:
Posts (Atom)