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
A chilling waiting game: disability and healthcare during a pandemic
A chilling waiting game: disability and healthcare during a pandemic
I have always taken pride in the tremendous progress (though far from perfect) that this country of mine has made in leading and furthering disability rights. Though I may be a minimally speaking autistic with comorbidities which significantly affect my daily functioning, and though the road has not been clear of bumps, such rights enable me to pursue higher education at UC Berkeley and aim for much more.
Now with the COVID-19 pandemic, people with disabilities like me all seem to be playing a chilling waiting game that is anxiety-filled. I wonder how long it will be before this virus impacts our family, caregivers and other supports we rely on for our wellbeing. If we are personally infected, how bad will it be? Death is an inevitability for all humankind, and I am not afraid of dying. However, what would be both macabre and tragic is if the death of a person is due to the fact of their life being thought of as not having value to society.
When I first came across the term medical rationing toward people with disabilities recently, my reaction was shock. It was even more disconcerting to learn that such practices are in play in this day and age and exacerbated by shortages in a developed country like the US, which is supposed to be a global leader in terms of resources, technology and medical research.
Historically, our society has marked some lives, such as those with disabilities, as having less value and therefore as not entitled to all that the rest of society may take for granted. For instance, in my disability studies class at UC Berkeley we had learned of the eugenics movement and sterilization laws that targeted those with disabilities; they were termed “weak and feeble minded” and thus prevented from passing on their ‘defective genes.’
With respect to medical rationing, Samantha Crane, Legal Director and Director of Public Policy of the Washington D.C.-based disability rights organization, Autistic Self Advocacy Network, states that while some states may not have explicit written laws, they do have triage guidelines that deny healthcare to some people with disabilities.
“For example, New York State Department of Health has guidelines saying that if there is a shortage of ventilators, doctors can consider ‘severe chronic conditions that adversely impact health functionality,’ like spinal muscular atrophy (SMA), when deciding who should have access to a ventilator. Even if someone was already on a ventilator before coming to the hospital, doctors can actually remove them from the ventilator if they don't meet the guidelines,“ said Crane.
From 2010 up until February this year, Alabama enabled healthcare discrimination against people with intellectual disabilities, with its now-unpublished, former ventilator triage guidelines for mass-casualty emergencies stating that “children with severe neurological problems may not be appropriate candidates.” In my mind, this guideline impacts a significant percentage of autistic children alone, not to mention children with a wide range of other disabilities. It is concerning that these guidelines were in place until just this year. Tennessee and Washington are further examples of states with discriminatory guidelines.
According to Crane, many disability organizations across the nation at both the local and national level have been collaborating in the effort to file complaints with the Department of Health and Human Services, or HHS, in recent weeks in what has become almost a race against time.
Lawrence Carter-Long, Communications Director and Director, Disability and Media Alliance Project, at the Berkeley-based Disability Rights Education and Defence Fund, also pointed to resources that the DREDF had compiled, “to give folks the resources necessary to fight back — do the homework basically — so other groups across the nation and in other states don't have to reinvent the wheel.”
These resources include information on the Illegality of medical rationing on the basis of disability as well as a letter to Governor Gavin Newsom urging him to prohibit such healthcare rationing.
Carter-Long explained, “Our intention with this material was/is to 1. make sure this is on the Governor's radar and to go on record, 2. compile the necessary resources for other groups across the nation and 3. create a template other advocacy organizations can use with minor changes.”
On March 28, the HHS Office for Civil Rights released a bulletin telling medical providers they could not discriminate against people with disabilities. Roger Severino, OCR Director is quoted in the bulletin as saying, “Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism. Persons with disabilities...should not be put at the end of the line for health care during emergencies.”
In addition, on March 30, the California Departments of Health Care Services (DHCS), Public Health (CDPH), and Managed Health Care (DMHC) issued a joint bulletin stating, “The State of California understands that people with disabilities are concerned that medical providers might consider an individual’s disability status when determining which patients to treat if hospitals or other health care facilities experience a surge of patients needing life-saving care. This joint bulletin reminds health care providers and payers that rationing care based on a person’s disability status is impermissible and unlawful under both federal and state law.”
But whether these directives will translate to reality in a field that is already absolutely overwhelmed and desperately short of resources during a pandemic remains to be seen.
Clarissa Kripke, M.D is a Health Sciences Clinical Professor and Director of the Office of Developmental Primary Care at UCSF. Kripke is on the frontlines of this pandemic and felt that “one thing that confuses doctors is that function has been used as a proxy for life expectancy.”
She explained by the time someone is having functional problems due to age or chronic disease in their vital organs, those organs have very little capacity left and any little thing could be fatal. So loss of function is associated with a poor prognosis if the reason for the loss of function is severe damage to one or more vital organs from age or disease.
Kripke, who is also Vice-Chair on the board of Communication First, which advocates for communication-disability civil rights, added that people with neurological conditions often have severe functional or cognitive problems, but perfectly healthy vital organs. In that situation, poor function doesn't mean poor prognosis at all. According to Kripke, people with disabilities and healthy vital organs benefit greatly from aggressive medical care.
“In the language of rationing schemes this distinction often gets muddy and people are assumed to be dying even when they are not. Function or diagnostic labels such as intellectual disability or autism should not be used to estimate likelihood of benefiting from medical treatment. Only signs of the health of vital organs should be used,” Kripke said.
Kripke wants to stress that the lives of people with disabilities are meaningful and valuable. She feels that healthcare rationing is not inevitable and that it instead will be determined by two things. First, the degree to which we collectively and individually do our part in stopping the spread of the virus, and second, how soon we do it. If we take action too late, then we face untenable rationing in which there is no justice any way you look at it.
“It would be helpful if we could predict who will benefit from treatment, and who will not, but we don’t have a way to do that accurately. Healthcare by lottery isn’t a better solution,” Kripke said.
Since there is no known cure for COVID-19, your immune system is the main thing that will fight the virus, explained Kripke. By the time someone is critically ill enough to need a ventilator, their prognosis is poor, with or without a ventilator, and there is little healthcare professionals can do to change the course of the illness at that point. So she would like everyone to really focus on optimization of compliance and prevention strategies.
According to Victor Pineda, every field of ethics incorporates value judgments, and there are evolving conceptions of what justice is and what is ethical or unethical. Pineda is a world renowned human rights activist, UC Berkeley adjunct lecturer at the department of city and regional planning and Director of Inclusive Cities Lab at the Institute on Urban and Regional Development.
He explained in modern times, people with disabilities have been seen as deficient or as an expense or liability to society. At the same time, we have the universal declaration of human rights like the UNCRPD (United Nations conference on the rights of people with disabilities). The current situation is thus an opportunity to rethink medical ethics in ways that follow the principles of social justice.
“In these times we are really tested to show who we really are, what we really care about, what are the values worth fighting for, what are the values worth defending. Do we value human rights and human dignity, social justice and equality? It's exactly when we should be most challenged, that we should live up to those highest morals and aspirations,“ said Pineda.
Pineda has a neuromuscular condition that requires him to use a wheelchair and a machine to breathe so he can live with his current 9% lung capacity. His machine provides non-invasive pulmonary breathing support in that it goes over his nose. He took the decision to self-quarantine early on during this pandemic to reduce risk.
Right now he feels that he lives in this existential level of threat that is assaulting not just entire systems and economies, politics, policies and institutions, but also his personal wellbeing. Pineda has had to engage in different risk assessments relative to his personal care.
“Who will care for me? How responsible are they? How closely will they follow protocol, in terms of hygiene, in terms of cleanliness, in terms of washing their hands, in terms of washing my equipment, wiping down surfaces? What is the cost associated with that much higher level of care? ... So with that I think we are in a very difficult place,” said Pineda.
Pineda had been advised by his Stanford pulmonologist not to go to the hospital if infected with the virus and instead to maximize his settings at home and try to recover there. Should he reach a point that he simply can’t breathe, then he will need to go to the hospital to be attended to.
The problem is that Pineda would not be able to go to the hospital by himself as he needs an attendant to even take him there, which puts him at tremendous threat and risk. It is akin to someone who is deaf and unable to go without a sign language interpreter.
In addition, Pineda said his ventilator would be confiscated as it does not meet certain criteria and he would be intubated, wherein they put a tube down his throat and perform a surgery called a tracheostomy. So the thought of going to the hospital without the two things he most needs — his ventilator and his attendant — is very scary for Pineda.
I have to echo Pineda's sentiment that this is all quite scary as the unfolding events feel out of control. An issue that has been on my mind is that those of us with more significant disabilities and limited spoken language ability are highly dependent on parents, family or known caregivers for much of our basic living skills support. I can just imagine my already limited communication skills absolutely shutting down when in trauma or when ill. The thought of being quarantined or left alone without support is frightening.
I also wonder what happens if both our parents or our primary caretakers during this time get infected. And what happens in the case of a single-caretaker home, for not everyone comes from a large circle of friends and support. Even in ‘normal’ times, public service agencies for the disabled community like the Regional Centers set up by the California Department of Developmental Disabilities take time in setting up or coordinating services; they would be utterly overwhelmed in a pandemic that requires almost immediate responses.
But while the immediate future has a level of uncertainty, Kripke also offered advice for individuals with disabilities and their families during this time of the global coronavirus pandemic.
The first is that it is important to have access to food, medications and supplies that people with disabilities rely on to maintain good health and also access to consistent paid and unpaid support.
She stressed that retaining your rights and being safe and wise are not the same thing. People who moved around before the shelter-in-place took effect unwittingly may have contributed to the public health crisis. She also points out that although you may be entitled to services in your home, providing those services could pose a risk to you and your family. Therefore each of us needs to make good choices about what risk is “essential.’
Kripke also felt that the complex support needs of individuals with disabilities may mean even stricter physical distancing requirements than for the general population to reduce the risk of exposure for individuals and their caregivers. It may mean postponing medical procedures or forgoing important but non-essential services.
It may also mean getting telehealth advice rather than risk physically going to a clinic, she continued, as there is not only the danger of your getting infected or spreading infection, but also the risk of being separated from your advocates and communication support. While hospitals could make individual exceptions, there are reasons why a support person is not allowed as they risk being exposed to the coronavirus in addition to hospitals not being able to spare protective gear for the support person’s use. For some people with disabilities, it makes more sense to provide enhanced treatment at home rather than receive care in a hospital.
If, however, you are having an emergency where minutes matter, she urges you to call 911.
Kripke stressed putting together a circle of support, as you also need to think about who would provide care if your supporters or parents are sick. She pointed to a webinar by California-based Disability Voices United on Coronavirus Emergency Preparedness discussing tools that could help individuals with disabilities and their families think through such a plan. In the webinar one parent actually expressed the sentiment that what terrified parents was not dying as such, rather it was dying and leaving their disabled child (of any age) without support.
Kripke also advised developing a plan for what you will do if one or more of you in a household develops a fever or cough. If you need personal assistance that requires close contact, then your household should try to secure protective equipment (masks, gloves, eye protection, gowns) to address the first 72 hours after someone in the household becomes ill to avoid spreading the virus in the home. You may be able to get more supplies from your department of public health if someone is sick.
While it is not possible to provide care to a sick person without getting exposed to the virus, she advised trying to limit exposing all supporters. This may mean some family members moving to a separate room or out of the house for a period. And if possible, exposed and unexposed people should not share bathrooms.
Other important issues according to Kripke are not allowing the more flexible regulation and oversight to lead to increased abuse and neglect; protecting service providers' health and economic interests; and access to safe quarantine centers if sick people with disabilities, housemates, family members or service providers need to be separated. Discrimination and social isolation are also important issues to be considered.
Kripke is appreciative that the Bay Area’s early and aggressive spatial distancing and shelter in place directives are being taken seriously by residents and is proud of local, city and state leaders who are sending consistent and appropriate messages, taking action and calling upon all of us to do our part. She sees the community too is coming together, and she encourages everyone to keep it up.
She feels that if we do our part to flatten the curve, public health departments and hospitals and regional centers will have more time, personnel and resources to help solve problems and accommodate. In the meantime, any solutions you come up with your friends, family and trusted community organizations will probably be safer and better than the ones they will be able to arrange.
Kripke leaves us with some very encouraging words of advice: “Let’s use this crisis as an opportunity for community organizing and sending a message that none of us are expendable. We won’t leave anyone behind. Our country has problems, and we are the solution. We can save ourselves, our families, our community, our country, and our world by sharing information, working together, acting in unison, and helping each other.”
Subscribe to:
Posts (Atom)