Showing posts with label Pandemic. Show all posts
Showing posts with label Pandemic. Show all posts
Changes in Big-5 during Pandemic
I always think of the exponential effects on autistics.
(https://view.info.apa.org/?qs=ab2c9530baf7a6ce1051f3f9254b1595fbcf171f4a81ad3eed135b5a5f2cec4508d1f4b727d406c0bea89be99e8df4a9ad7fee31eba4572980be2e27faddf3b287ffdd23c1cb6fc2f324d4ab0e197f72)
Incoming Lambda
Not enough that we have a delta variant causing grief the world over.
And now there a Lambda variant which is slowly creeping in.
Image Source news-medical.net
Youth Today Article
I'm mentioned in a Youth Today Article
https://youthtoday.org/2021/04/pandemic-forces-autistic-people-to-cope-with-ultimate-uncertainty/
SCREENSHOT OF AUTISM SOCIETY OF AMERICA'S CORONAVIRUS INFORMATION SERIES
Autism Society president Chris Banks (left) interviewed Berkeley student Hari Srinivasan in August about how he was coping with the pandemic.
University of California, Berkeley graduate student Hari Srinivasan had finally begun to immerse himself in campus life last year — no easy feat for an autistic person who is mostly nonspeaking.
Then the COVID-19 pandemic hit, and suddenly the university system moved everything, including classes, online.
“I was enjoying the social aspects of college, building community with student organizations and even attending parties,” Srinivasan said with the help of a text-to-talk device, during an interview with Autism Society President Chris Banks on Aug. 27, 2020. “So this complete lack of face-to-face contact is a huge setback for me on the social gains I was making,”
The pandemic has been disruptive for almost everyone, but its disruptions have been particularly difficult for autistic youths, who thrive on routine.
Srinivasan and others like him have had to spend the past year finding creative ways to cope.
“This pandemic is like collective societal trauma and autism issues just exacerbates its effects,” he said. “… Many of us autistics don’t like too much uncertainty and this pandemic is like the ultimate uncertainty.”
Remote Instruction, International Edition
So I'm in India for a few weeks.
I had multiple varieties of kuzhutattai for breakfast. Kuzhukattais are traditionally steamed rice balls with sweet or spicy stuffing inside. They just got more creative. The white one is made with palm sago, there were ones made with Ragi (Millet) and also upma kuzhukattai.
A variety of spice and sweet Lip-smacking and finger-licking varieties.
Remote Instruction, International Edition
Remote Instruction at the table your parent used during their schooling. No laptops back then!!
A Variety of Kozhukattai Experience
The tiffen scene in Chennai is quite interesting.I had multiple varieties of kuzhutattai for breakfast. Kuzhukattais are traditionally steamed rice balls with sweet or spicy stuffing inside. They just got more creative. The white one is made with palm sago, there were ones made with Ragi (Millet) and also upma kuzhukattai.
A variety of spice and sweet Lip-smacking and finger-licking varieties.
Murunga's Three Feet Long
Freshly harvested Murunga Drumsticks (Moringa Olifera). Murunga's are loaded with good nutrients right from Vitamin C to antioxidants with many parts of the plant used in ayurveda meds. I've never seen a muruga drumstick this long before - its over 3 feet long. And these look fat and juicy too, when cooked.
I'm think I'm getting a yummy Murunga dish from Paati (grandma) tomorrow. Can't wait.
Competitive Cats
The cats at my grandma's place are seriously competitive. It saw me hugging grandma and demanded - as in meowing away loudly and pawing the rug and couch - to be be given room on the couch so it could get in on the love.There are actually 2 cats here, one on each floor and each possessive about its territory. The downstairs one (Chinni) never goes up and vice versa for Feather. The upstairs cat is quite old and decides to meow away in the middle of the night for food.
And did I mention the visiting fellows. A couple of cats turn up at the backdoor several times a day and meow for food. My Paati promptly feeds them. These cats never venture inside else they face the wrath of the house cats.
They are too funny. LOL
Lifelong Learning
My Paati (grandma) likes languages and at 82 doing courses on conversational Sanskrit. Got distinction in her last exam too.
No cats competing for this Paati's attention. Lol
Healthy Idly's
Breakfast today was healthy Bajra Idly's
The Ubiquitous Masala Dosa
Evening tiffen was Masala Dosa with sambar and chutney served on a banana leaf
and filter "Kapi" (coffee) served in a tumbler and dabara (saucer)
Happy Tamil New Year Everyone. Its the herald of spring.
My first Tamil New Year in Tamilnadu!!
An elaborate and delicious naivedyam lunch made by Paati (grandma) and Athai (aunt) with mor kuzhambu, kootu, 2 karamadhis, vadas, green mango pachadi, carrot payasum and more. Delicious and served on on a freshly harvested banana leaf from the garden.
It usually rains on Tamil New Year and the weather did not disappoint. Complete with Thunder. Rain is considered auspicious, means things will go well.
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.
Love Each Other
An Apt message for the Times @Albany Waterfront Trail
The Albany Waterfront Trail meanders behind the Golden Gate Fields Racecourse in Albany, CA and hugs the bay as it stretches to a little strip of land, simply known as the “Albany Bulb.” It’s a chance to see the Bay Bridge on one side and the Golden Gate Bridge on the other, even as the sun sets over the silver ocean at dusk. Nature and the universe continue to shower their infinite love upon all us humans living on this beautiful planet that we call home.
As I was ambling along the trail, I came across this sign painted on a wood bench:
“Love Each Other, Wear A Mask.”
But what is even more timeless, is the first part of the statement, “Love Each Other.” We all witnessed the hoarding of toilet paper and panic buying earlier this year as soon as the Pandemic began. But during this time of global crisis, we also saw unprecedented levels of altruism, generosity and kindness towards strangers across the world. We had almost reached a state of “Agape,” the Greco-Christian term for unconditional love of our fellow human beings or the Sanskrit “Metta;” in transcending consideration of the self into seeking what’s best for others.
It turns out that humans are innately built for love, goodness, kindness and compassion.
So how do we consciously move towards this state so that this innate goodness becomes a part of our everyday existence?
In my class on “Basic Issues in Cognition” at UC Berkeley, we learned that loving kindness actually begins by developing acceptance towards oneself, and if there was resistance, it usually indicated feelings of unworthiness. If you cannot love yourself, you are an empty cup with nothing to give to others.
Professor Davina Chan led us through a simple loving kindness exercise, which can be practiced daily for a few minutes.
Start with Loving Kindness towards yourself by repeating.
May I be happy
May I abide in well-being
May I be secure
May I dwell in safety.
This warmth is then directed towards others, first to people you care about then extended to acquaintances, strangers and even those you regard as enemies.
Regular practice of simple actions can thus lead to an avalanche of profound change within ourselves and the world. The wood bench on the trail, sums it up - “Love each other. Wear a mask.”
Let us begin today!
Creative Workarounds and Silver Linings
https://www.neuronav.org/post/creative-workarounds-and-silver-linings
A reflection for the NeuroNav newsletter
A Thank you to Healthcare Workers around the world
From 6 Countries and 14 languages comes this tribute to healthcare workers around the world from the Sacramento based WeEmbrace and founder Meena Kalayanasundaram
Happy to have played tiny role in this compilation
My tiny bit
https://youtu.be/6gbMqJhSYi4
Shelter-At-Home Finals
And with that ends my last "shelter-at-home" exam for this semester.
Wearing my "Earn It" yellow Cal football shirt cuz yellow is the color of education.
Cal Professors wishing students luck on their finals
Crip Camp Conversations: Disability Leaders Respond to Coronavirus
The Best Audience Chat Comment undoubtedly was
"I feel like my life will now be measured as “pre this talk” versus “post this talk”. Thank you for this!"
Amazing experience being on the panel for this webinar. Glad to be able to add value to this very important issue.
I got several requests to share what I'd "talked" about in the webinar.
Here are the slides and transcript of audio.
Introduction
Image Description. Young Indian American male sitting in front of a laptop. Black hair. Wearing a cap and T-shirt that say Berkeley.
Hi everyone. Thank you for having me here. My name is Hari Srinivasan. I’m a non speaking autistic. I type to communicate. I have a bunch of other challenges like oral-motor apraxia, ADHD, OCD, anxiety etc.
I’m a student at UC Berkeley with a major in psychology and minor in disability studies.
This is my third semester as student instructor for a faculty sponsored semester long class on autism. I think of it as a way to change awareness in the way 30 students each semester will come to view disability and autism in their future lives. A majority of the students are non-autistic and able-bodied. We had a very interesting discussion on autism and covid-19 just two weeks ago.
I’m also a student journalist for the Daily Californian. I get to write about many disability related issues which have included a column on autism. My two recent articles focused on social distancing and on healthcare issues surrounding the disability community during this pandemic. If you google my name and Daily Cal you should find links to these articles.
As the pandemic unfolded ASAN has really been working with other disability orgs to advocate for our civil rights. An early area was medical rationing, the combined advocacy has lead to non discrimination directives at various levels. But we have to continue to be vigilant that this is translated to in the field.
ASAN is also branching out now to work on issues like making sure people who need a support person can bring their family member or communication partner with them if they are hospitalized, even if the hospital has a no visitors policy, as a reasonable accommodation under the americans with disabilities act. As a person with high support needs, this is an area close to home for me.
In terms of home and community based services, ASAN is pushing very hard for the next covid bill to include emergency grants to service providers so that people can be supported in their homes, and to keep people from ending up in congregate settings. To make that possible, support people need personal protective equipment and higher pay, as well as emergency child care and paid leave. Some agencies need to hire more folks and rearrange how they provide services etc. ASAN is also tracking infections, hospitalizations, deaths from covid-19, of people with disabilities living in congregate settings, because we know those settings are so much deadlier than a person's own home.
Several disability orgs, including ASAN, are partners on the #WeAreEssential social media campaign, which lays out a lot of these issues along with others.
Issues facing Students and Families during this time
Hari, we know covid19 has had a great impact on students and families. Can you tell us about student responses or your thoughts on this?
I’ve been informally polling other peer autistics and their families to find out their challenges. And, as an autistic with high support needs, I experience many of these issues myself as well.
To start with, this pandemic is kind of like a waiting game filled with endless uncertainty and anxiety. If the abled bodied population themselves are having increasing mental health issues, it’s a multiplier effect on the disabled population. I’m hearing that even kids under 10 are getting prescribed antidepressants.
In autistics this uncertainty and anxiety can also manifest in so many different ways. There has been a huge increase in all kinds of maladaptive behaviors, whether it's meltdowns, obsessive compulsive behaviors, aggression, self-injurious behavior, disturbances in sleep patterns and other things that add to the already stressful times.
It's the disruption or even lack of access to support services, therapies and education itself. The remote education model or tele therapy does not work for many who need that physical one on one support and have other needs. I want to quote one parent who says that “only certain people with certain needs qualify for tele therapy.” Students who are transitioning between the school and adult programs, like one of my friends, are stuck in limbo with no help at all.
Many autistics had been working on building independence in community based skills or social interaction skills. Many don’t have the same access to the outdoors or nature hikes as before even for physical exercise.
Even prior to the pandemic, we as a community have experienced a great deal of social isolation and stigma; this lockdown has given it a frightening face. Lack of these critical supports, therapies and social opportunities will mean a regression in skills for autistics.
At the same time, many other skills and behaviors have to be un learned for the current time, such as shaking hands or holding the door open for others. Then there is other hygiene issues - autistics with impulse control issues find it hard to not touch surfaces or maintain a six feet distance.
Even for those who are able to avail of some form of remote instruction, whether at school or college level, there are big time gaps between the classes, with basically nothing to do. While some have figured out ways to cope, others find this to be very isolating and suffocating. One of my peers says he is “super duper frustrated.”
A bright spot is that some autistics are enjoying remote instruction, where you are free from social interaction pressures. I can just mute my zoom to cut off my stemming noises. Keeping up with social expectations can be exhausting for autistics.
Wearing a mask has presented another challenge as many autistics have sensory issues.
Every autistic has a different set of challenges and things that calm or work for them.
It takes time for families and other caregivers to figure these out. Those with higher support needs rely on caretaker familiar with their needs. During this pandemic the caregiver role defaults to the immediate family for many autistics. What happens if those caregivers fall ill or if the individuals themselves fall ill. Will healthcare workers even know what to do, how to handle our “behaviors” and other unique needs?.
Autism is wide spectrum which means that many have health co-morbidities, like seizures and gut conditions. Even during non-pandemic times, many of these go undiagnosed. How will doctors even begin to treat us.
Many of us will need our support person with us if we need to be isolated or hospitalized. It is a scary thought to imagine being alone in a hospital. I am so happy ASAN, Communication First and other orgs are working on this issue, That support people be not just be allowed to accompany us, but also be provided the PPE protective gear.
Some of my peers have needed hospitalization for other issues during this time, which can be absolutely un nerving.
I can’t even begin to articulate the plight of autistics who are in group residential settings, especially the larger ones.They like nursing homes for the elderly, are sitting ducks.
Now for another perspective. I mentioned earlier that we had discussed autism and covid at the autism class at U C Berkeley for which I am a student instructor. A majority of the class are able-bodied students. What really struck me was the lack of awareness on the part of the non-disabled community. Some of the student responses in my class - from surprise to shock is so telling. Here are a couple of sample reactions.
“This entire pandemic is making me absolutely sick about how the disability community is being treated. Dehumanized and devalued. It’s not fair, it doesn’t make any sense”
“The disregard for people with autism, or any intellectual disability, by hospitals in the time of covid 19. It is saddening to see, especially when it is in direct noncompliance with the Americans with Disabilities act.”
“Something that surprised me was how people on the spectrum are being treated throughout covid 19. It actually makes me so upset that people need just as much medical attention as those that are being affected. Just because we are having a pandemic does not mean the normal life things just suddenly stop.”
The point I want to make by showing you these student reactions is that we need to work even more vigorously on awareness of these issues in the mainstream community to bring about change. We need even more allies in the non disabled community. Only then will change be easier and can happen. The current scorched earth scenario is laying bare all the inadequacies of the system. This is like a shocking wake up call of sorts.
What gives me hope
What is giving you hope or resiliency right now?
I am in awe, of the fierce advocacy efforts being done by organizations and individuals to keep our civil rights alive by making noise and lobbying and widely publicizing our issues. We need to make a lot more noise.
This time of need has also given way to so many random acts of generosity and kindness.
An example is the many different online free classes that have sprung up to help us through this hard time. I am able to try out new classes and am no longer limited by having to travel to a remote location amid traffic to try these things.
Our new normal has meant that many of what we thought had to be social norms are no longer applicable. You don’t have to sit in a cubicle from nine to five to be able to hold down a job for instance. You can turn off the camera or the mic on your zoom if you want. You can choose to be heard and seen.
I am also encouraged at how greener our earth is getting in just such a short span of time. Just cutting down traffic can have such a huge impact on our air quality. It gives me much hope that we can do something about climate change. And with people in lockdown, the animals are finally getting to enjoy the outdoors in peace which is again telling of their oppression.
I am in deep admiration that many in the disabled community are not just helping out each other during this time but also participating in the greater community good, like making masks for healthcare workers.
Our strength of character and resilience is shining through. And that gives me so much hope for now, and the future.
A Call to Action
We have enough time for each panelist to make one call to action.
This has been a tremendous wake up call of sorts for all of us.
I'll keep this call to action very short with ASAN’s big ask right now.
We really really need people to call, to email, to tweet your congressperson, and demand funding for home and community based services.
autisticadvocacy.org/2020/03/action-alert-covid19-relief/
Additional Audience Chat Comments
Fantastic insights indeed Hari. Thank you so much for sharing
Thank you Hari - great insights!
Thank you Hari for your positive words of hope.
Great insights Hari.
Full Video at https://www.youtube.com/watch?v=mXiI-5WV1RY
The Real Social Distancing
My latest article in the Daily Cal about the new kid on the block - the term "Social Distancing"
We are living in unsettling times. We are surrounded by images showing us exponential growth curves of COVID-19, or the coronavirus, cases around the U.S. and beyond, in what is now a global pandemic. The situation is even more baffling, anxiety-filled and stressful for people with disabilities, many of whom already face underlying health conditions and other comorbidities.
In fact, disability categories were listed in the top-10 “at risk” populations in the Centers for Disease Control and Prevention recommendations for mitigation strategies sent to local counties. People in the disability community also have to worry about family, friends and other support that we rely on and that are critical for our functioning and maintaining a decent quality of life.
“This period of enforced social distancing brings disruptions in the schedules of people with disabilities. The mechanisms of support — life support, social support, continuity — are fraying at the edges. When we wake up, we do not know what the new day will bring. Will we be forced to go outside, to relocate, can we find the things we’ll need to survive? Will the person who brings our groceries also inadvertently carry the virus that will kill us? All of these unknowns swirl around and choke us,” said Karen Nakamura, professor of anthropology and Robert and Colleen Haas Distinguished Chair of Disability Studies at UC Berkeley.
Indeed, “social distancing” is the term you hear when you tune into any media source. It’s the new buzz term, the new kid on the block. Many in the U.S. and around the world are hearing of this term for the first time in their lives in recent weeks. The term is approached with a mixture of fear and excitement. Excitement because it seems to provide a tangible way to deal with the need of the hour, slowing the spread of COVID-19, and because of the messages all around us (whether from the media or the campus administration) regarding the importance of practicing social distancing for the global coronavirus pandemic.
At the same time, social distancing is also a concerning and less desirable idea for most, as no one relishes the thought of being isolated from the rest of society. After all, being part of a valued social group is a fundamental human need. As a result, the public comforts itself in the knowledge that this new “social distancing” they are hearing of is a temporary phenomenon, which can be safely tucked away out of sight and out of mind once the pandemic has subsided.
The irony in all this is that social distancing is not something new, or a medical precaution to be grouped with the frequent washing of your hands, which is the other big piece of advice of the day. Some groups have been painfully aware of the practice of “social distancing” for a long time now. Social distancing has been widely practiced against people with disabilities, whether it’s physical disabilities, mental disabilities or neurodevelopmental disabilities such as autism.
The irony in all this is that social distancing is not something new, or a medical precaution to be grouped with the frequent washing of your hands, which is the other big piece of advice of the day.
Social distancing as a term was first coined in the 1920s by sociologist Robert Park. In the 1930s, the Bogardus social distance scale was developed to measure people’s desire to keep a distance from individuals in socially devalued groups. Variations of that scale are still prevalent today in the many studies being done on the issue. Social distancing scales basically ask people the extent of their willingness to be close to those from “outgroups,” with measurements ranging from high distance (willing to live in the same state as a person with a given trait or condition) to much closer connections (willing to be close friends with such a person, or even close relatives through marriage with them).
“For many people with psychiatric and intellectual disabilities, social distancing has been much of their experience — forced withdrawal from school, sequestration in homes or institutions and missed opportunities. A social life was always something that happened to other people,” Nakamura said.
As a minimally speaking autistic with significant challenges, I have been painfully aware of social distancing for much of my life. It is the way the kids from some special education classrooms are the socially isolated group in one part of the playground or even have a different recess time from the neurotypical kids in public schools. It is the deeply hurtful way a visiting parent intentionally moved her child to their other side as they passed by me and my aide in the hallways of Dilworth Elementary School. Yes, my autism does include stimming or off-beat mannerisms, but I was just a small third or fourth grader then. Maybe the belief of such people is that autism, like a virus, is “transmittable” and thus a reason for social distancing.
Social distancing is also being automatically excluded or ignored in activities that neurotypical kids are involved in. Ironically, the unspoken social distancing rules toward autistics like me did not apply on Halloween when there would be a host of costumed neighborhood kids at my doorstep asking for candy. Social distancing was something that could be turned on or off at the whim of society around me when it suited it.
For me, the term social distancing equates to loneliness and isolation due to nonspeaking autism. Most of my life has been spent trying to overcome and reduce this social distancing, and my college experience at UC Berkeley (though not without its bumps) has been a delightfully refreshing upgrade.
I was all the more intrigued when I heard UC Berkeley professor of psychology Stephen Hinshaw speak on social distancing during his talk on stigma and autism at the 1:59 Autism Spectrum Disorder DeCal, of which I am a student instructor, in mid-March. He jokingly remarked that he had wanted to rub his eyes in shock when he saw the term on a website a few weeks back, but of course, you are not supposed to touch your face. Now he sees the term in almost every post from any administrator or the campus. Hinshaw has been studying and writing about stigma and social distancing for a long time now.
“Social distancing is that place on the continuum between living on the same planet with somebody with a stigmatized condition to being much more socially close with them. We want to erode social distance and have closeness,” Hinshaw said during the class.
“Social distancing is that place on the continuum between living on the same planet with somebody with a stigmatized condition to being much more socially close with them.”— Stephen Hinshaw
Stigma results from a fear that disabilities are somehow contagious, so you keep a social distance from the person regarded as contagious. Hinshaw added that we are now being told that in the age of COVID-19, social distancing is a good thing, but we have to be aware of the hidden meanings of that term.
Hinshaw acknowledged that the new normal for the good of the group in order to prevent the spread of the coronavirus is to practice social distancing. He wished that a different term had been used, however, as he had been fighting social distancing through his work on stigma for the last 20 years.
Alastair Iles, associate professor in the campus Department of Environmental Science, Policy and Management, points out that the disabled community has often been regarded as the “other,” a group to be stigmatized and isolated. This is more so for people with more visible disabilities such as wheelchair users, a blind person using a cane, a deaf person signing or those with intellectual and developmental disabilities associated with childish looks and off-beat mannerisms.
According to Iles, disability has often been understood to be God’s punishment or, “as a possibly contagious disease in itself, and … people who perceive themselves as normal feel they must avoid disabled people to be safe.” Though his own disability is not visible, Illes has encountered unwillingness by some people to further engage with him once they know he is deaf, which is essentially a form of social distancing.
Iles feels that what is now being termed “social distancing” is more of a “spatial distancing,” for which you have to be both six feet apart from others and cut back on all interactions that could spread microbes. He said we really need that spatial distancing now, and it is effective, as seen in other communicable disease outbreaks. He is quick to point out that while spatial distancing could help protect people with disabilities in the current situation, it could also deprive them of vital support and connections when they need it the most.
Iles also wonders about the way distancing is being understood and practiced now when he goes on his walks. Some pass him at a distance, make eye contact or smile, thus maintaining both social connection and spatial distance. On the other hand, he finds that younger people in their 20s and 30s seem to excessively avoid him by deviating across the road or ignoring him altogether. For Illes, it felt like a denial of the existence of interactions and shared community, which resonates with how disabled people are treated. He believes you can practice distancing in very different ways.
I spoke with a few other students with disabilities on campus to get their take on “social distancing.” It was all done online or via email, of course, given our current climate.
“I think now that social distancing is necessary, neurotypicals will get a glimpse of what living with non-speaking autism is like,” wrote David Teplitz, a political science major.
Incidentally, I feel social distancing is often confused with social interaction skills that some autistics may struggle with and which can lead to the mistaken impression that all autistics like to be left alone or “socially distance” themselves. For some autistics such as those who are nonspeaking or minimally speaking, social interaction skills may be impacted due to communication challenges. It is not lack of desire for interaction, it’s just that it can be a somewhat dampening experience when, for example, you can’t quite keep up with the rapid pace of the back-and-forth spoken communication of your peers when your typing is slow and awkward.
For other autistics, social interaction skills may be affected by challenges in fully grasping the nuances of social norms, which makes them the “outgroup.” For that matter, even the able-bodied, neurotypical introverted person has a harder time with social interaction skills than the neurotypical extrovert.
For Anna Bernick, an American studies major, the current situation is “automotive. We already surround ourselves with screens for hours on end and now we have to for most social interactions. It sucks.”
Brian Liu, who studies integrative biology and applied math, also had a hard time fitting in while growing up due to his autistic traits such as taking things too literally.
“I was unable to tell that a friend didn’t want to talk to me when they literally said they enjoyed talking with me. It is when I have something in mind, but the way I express it is misunderstood,” Liu said. “Social distancing happens, which leads to more social distancing. It leads to rumors being spread, as you sit there fixed, watching it unfold because your experience goes unheard.”
Liu feels that perhaps nondisabled people find it hard to distinguish between social distancing and physical distancing, as they tend to think of social gatherings as physical gatherings, “whereas to certain disabled folks, it feels like an honor to even be included in an online group, which they would consider a social gathering.”
Even with the current “social distancing” norms in place, Liu found that after checking in with a group, many people had actually caught up socially with a lot of their friends online. Liu, on the other hand, has had to initiate almost all his conversations.
It is clear that the disabled community’s perceptions of social distancing are very different from the current usage of the term. Words matter, and other terms that have less historic connotations can be used. Perhaps a good place to start is to rebrand the current “social distancing” to the more accurate “spatial distancing” or “physical distancing.”
Perhaps a good place to start is to rebrand the current “social distancing” to the more accurate “spatial distancing” or “physical distancing.”
I also worry about the way “social distancing” is used jokingly in memes as a temporary and infrequent phenomenon. Will this trivialize or normalize its use in the future, post-pandemic world? Will it just become the mainstream and acceptable “thing to do?” Will it be okay to socially distance any “group” (such as people who have disabilities) for any reason in the future, as everyone’s had to do it currently?
According to Iles, public health experts are saying we will go through a few rounds of “social distancing,” so it is possible that people will become accustomed to this behavior they currently find alienating and stressful. This might lead to a greater tolerance of distancing behavior in the future. He adds that like countless times in the past, power inequalities could well play out and result in distancing exercised toward certain marginalized groups with the claim that it’s justified for safety and well-being. It might also be considered acceptable for some groups to distance themselves from a problem while leaving vulnerable populations more exposed. Relating to this topic, Illes is currently working on an article about agricultural workers and the disease.
“What might be a bit different is that the virus threat will be invoked in the future to stigmatize various groups — as those who are supposedly more likely to be “carriers” of the virus. Or, the memory of the virus will be used in this way,” Illes remarked. “But you shouldn’t assume that it will happen; there are strong social bonds between people — we are social beings for the most part.”
Times of crisis often bring out the best in people too, as demonstrated by the countless stories of generosity during this time of need. Even in the midst of the coronavirus pandemic, people have been quick to offer free resources online such as yoga classes or access to educational materials. There has been a quick restructuring of business and educational models so that life, studies and work can continue from the isolation of home. People are finding ways to socially connect with strangers in many small ways. Let’s not confuse our current spatial distancing with social distancing.
I want to believe Charles Darwin’s take on the human species as one of “survival of the kindest,” and not just “survival of the fittest.” I want to believe our human society has great capacity for goodness and compassion for all its members. And now that more of society has had to experience the pains of isolation for themselves, dare I dream that society will rethink social distancing against marginalized groups such as the disabled community in the post-pandemic world?
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