Crip Camp Conversations: Disability Leaders Respond to Coronavirus

https://www.youtube.com/watch?v=mXiI-5WV1RY

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. 

https://www.dailycal.org/2020/04/04/a-chilling-waiting-game-disability-and-health-care-during-a-pandemic/

https://www.dailycal.org/2020/03/27/the-real-social-distancing/

I joined the board of ASAN, the Autistic Self Advocacy Network earlier this year. 

autisticadvocacy.org

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

Remote Instruction till semester end

 

Remote Instruction through semester end for all classes at UC Berkeley

The Women in My Life

Revisiting this article written exactly two years ago for International Women's Day.

https://www.dailycal.org/2018/03/08/women-in-life/

'The Women in My Life' is a tribute to the women in my life who gave that extra helping hand. 

This is the fourth of my series of 10 articles for my weekly opinion column "The Person Inside" for the Daily Californian. 

----------

Headline: The women in my life

My autism has meant that I’ve been surrounded by therapists for most of my life. As it so happens, the field of school education, counseling and therapy is often dominated by women. 

Thursday is International Women’s Day, so this column is a tribute to the amazing women in my life — especially one who literally turned my life around. 

Up until middle school, I was going nowhere and learning nothing. I was nonverbal and had no means to communicate. I was in a series of short-lived special education classrooms — teacher after teacher was eager to hand off the “difficult” autistic kid. 

I first met Janna Woods, with her purple hair and pink pants, when I was 13. It was chance when my parents attended a seminar and met Tyler Fihe, who was, at the time, a college-going and nonverbal autistic typer. Janna had been his therapist and, after meeting my parents, she came to work with me. 

Janna changed my life by teaching me to type and, as a result, communicate. She loosened that first brick in my Berlin Wall of Silence, and she helped the world see the person inside. 

As brick after brick was dismantled with one slow letter after another, thoughts poured out of me. I was able to have deep conversations with others for the first time in my life. I remember once telling Janna that typing had taken me from “personless” to “personhood,” and she replied that that was because communication is foundational. 

Janna encouraged me to do creative writing. She believed in me and my potential with a confidence that even I had ceased to have. She became my Angel Janna. 

With communication, I was able to enter the world of mainstream education. Janna trained other therapists to work with me and took me to weekly cognitive behavior therapy sessions to help me manage my emotions and anxieties. 

Janna gave me my first job: taking care of her huge dog when she went on vacation. I was thrilled that someone would actually entrust me with such responsibility and pay me for it as well.

She had insisted, even back then, that college was a definite possibility for me. Janna, you would be so proud to see me at UC Berkeley today. 

 

Unfortunately, Janna joined the angels above after fighting cancer two years back. She was too young to die. Janna helped many kids like me that the world had given up on by giving us a voice. 

We can’t underestimate what the women in our lives do for us — especially if they are not family members, with no vested interest. I’ve been fortunate to meet a few wonderful women who have given me an unexpected leg up or helped guide me along the unclear path of my autism journey. They have shown me compassion and empathy. They advocated for me, which a differently abled individual such as myself sorely needed. Most importantly, they have had faith in me. I am amazed and grateful. Janna was just the beginning. 

Cherie Azodi was the behavior therapist behind the dozen phrases that I am able to verbalize today — she would insist on having a conversation with me even if the phrases were rote. She did more than any speech therapist I’ve had ever managed. 

Cindy Riley first noticed me in a park as a toddler and brought her three kids over to my home every week for over eight years so that this young, autistic only child could socialize with his peers.

Viji Dilip is the founder of Access Braille, a nonprofit that supports literacy access for the visually challenged. She showed up out of the blue and made me the editor of a Braille periodical, which accompanies free Braille teaching kits distributed in many countries in Africa and Asia. Madhu Krishnan is a co-founder of Inclusive World, a nonprofit that provides training and volunteer opportunities for the differently abled population. These two women sent many interesting internships and projects my way. They made me feel that I too was a contributing member of society.

 

The college counselors from the Disabled Students’ Program are the enablers of my path to higher education. Their open attitude and faith is a wondrous and refreshing change from the days of my district’s special education teachers. 

All these women chose to believe in the possibility of individuals like me. All these women helped me build confidence and contribute to making the individual I am today. I want you to know that I truly appreciate and admire you, and I look forward to meeting many more such amazing women in my life.

Gallaudet University

Gallaudet University

Our week-long ACI conference was held at the Kellog Conf Hotel located on the campus of the lovely Gallaudet University.  It is unique in that it is the first university dedicated to the education of those in the deaf community and hard of hearing. It is officially a bilingual university - English, and ASL (American Sign Language).

Gallaudet has made its own mark in the Disability Rights movement. In 1988 deaf students were outraged after the appointment of yet another 'hearing' president for the university and started 'Deaf President Now' movement. After all the underlying principle of the disability rights movement is "Nothing about us without us."

What was interesting was that many of the staff at the hotel were also from the deaf community. My gluten-free loaf of bread had been kept in the hotel's fridge and we went to request for it before breakfast on the second morning. The receptionist immediately gave us a piece of paper and pen to write our request. Similarly, the restaurant also was staffed by folks that were deaf, their workaround was simply to point to messages on their badges or ask us to write our requests. It was an interesting interaction and very efficient actually. No wasted words. 

Vagaries of English Phraseology: Journey of An Autistic through GrammarLand

from 
https://www.dailycal.org/2019/04/07/vagaries-of-english-phraseology-a-personal-essay/

Vagaries of English Phraseology: Journey of An Autistic through GrammarLand

My introduction to the world of academics was rather late, since I learned to communicate via typing for the first time in my life only after I was a teenager. I was stuck in a silent, non-communicative world of autism until then.

My first attempts at typing were, at best, fragments. The focus was communication for this nonspeaking boy with autism. I’d never had conversations with the outside world before. I was as excited as a toddler just learning to speak. No one, least of all me, cared for the things called “punctuation,” “grammar” or “semantics.”

There would be odd spaces, words that ran together, an occasional comma or period, sentence fragments and all. Bursts of thought came gushing out and it was important to get the key words out rather than worry about a well-structured sentence. My impulsive and hyperactive body did not make for smooth typing either. My finger would accidentally hit the caps lock key and a few uppERcase letters would appear in the middle of the word as I slowly typed.

No one, least of all me, cared for the things called 

“punctuation,” “grammar” or “semantics.”

But communication was opening up my world, so I didn’t quite care. And when I started typing short pieces and poems, it was all in lowercase.

You see, using uppercase involved the use of two fingers: one on the shift key and the other on the letter key. But I was a one finger typer — a lone index finger on my right hand roamed the QWERTY keyboard, searching for and hopping slowly from letter to letter.

I soared in the power the written words afforded me. My written word substituted the spoken word. People never said pause or comma when they spoke so I figured I need not worry.

With the ability to communicate came the expressed longing for education. When the transition from special education took place, I leapt into eighth grade mainstream academics with anticipation and glee — straight into the arms of Shakespeare, algebra and biology.

An unexpected side of pedantics then reared its head — there was demand for these things called “grammar” and “punctuation.” Grammar was hardly the thing to teach in my former special education world. In special education, I was thought capable of only learning C-A-T spells cat and D-O-G spells dog, and single digit addition like 8+2 = 10.

My mind wrapped around a whole host of new terminology that was part of mainstream academics. Bits of sentences linked to grammar terms, however, simply had no relevance for me.

Grrr!  Gerunds were strangers that growled at me.

Modifiers dangled for some reason.

Mood was an imagined subjunctive

instead of happy every season.

Why were the verbs tensed?

I told them, don’t stress, just meditate.

“Is language not something to enjoy, rather than to be dissected like a frog?” I moaned. Did we have to reduce a sentence to a string of grammar terms?

Bursts of thoughts flow from the brain

Authority insists, must confine to rules

Macrocosm bound by microcosm chain

Drown in grammar phraseology

Lost in punctuation terminology

Essays needed punctuation and spell check; it was mandatory. I needed to bring my other index finger into play to hold down that shift key. Even punctuation like the lowercase comma had their issues. 

Sometimes the Oxford comma was needed by the teacher and at other times, it was a no-show. I wondered if the poor comma made the journey from Oxford, England to the Bay Area each time it was needed.

Word processor spell checks somewhat came to my rescue. I enjoyed the composition, literature and vocabulary parts of English.

but grammar terminology —

— definitely, not in my list of graces.

In a strange new world I was navigating.

It was in an American literature class that I first met e e cummings. The first poem I read by him was “in Just-.”

His poetry confounded me. A first glance, I sat up and wondered, “IS THIS WRITTEN BY A BOY WITH AUTISM — with poor fine motor ability like me? He uncapitalized, words ran together, there were white spaces and a general lack of punctuation. I was baffled and nonplussed, absolutely fascinated. I gaped and stared at the poem on the page.

What was going on and who was this person?

How did such a poem by a person with fine motor challenges make its way into my school textbook?

I soon discovered that e e cummings was a famous poet who intentionally decried grammar convention and punctuation. Even his name was all lowercase. No one had liked him initially, so he had to self-publish. But his unconventional style ended up being much admired by generations of critics thereafter.

There was meaning in his very lack of punctuation 

which gave me a lot of courage. Maybe I need not conform.

There was meaning in his very lack of punctuation which gave me a lot of courage. Maybe I need not conform. Perhaps my autism challenges could be transformed into strengths along the way. I just had to — had to — write in kind. I wrote the following poem in response to cummings’ assertions in his poem “since feeling is first“ and wrote it in the nonconformist style of his other poem “in Just-.”

noPeriods, Period

death’s no parenthesis

asserts e e cummings.

         actually

death

is

    a

        comma

                           an

   ellipsis

                                                                       whitespace

aPause

as the soulRenewsBody

life’s no paragraph

avows e e cummings

            just face it

life — is

   a

        smorgasbord

    no grammar syntax

       …just flows…..

    noPeriods. Period.

says  e e hari

I have to thank e e cummings for giving me additional perspectives on breaking the boundaries. “it takes courage to grow up and become who you really are,” he once said. 

I can break free to just be me.

Contact Hari Srinivasan at hari@dailycal.org.

Celebrating (Dis)abilities in the Workplace

Celebrating (Dis)abilities in the Workplace

https://www.dailycal.org/2019/03/02/celebrating-disabilities-in-the-workplace-disabled-faculty-and-staff-speak-on-challenges-future-steps-for-disability-accommodations-in-employment/

My article for the Daily Cal after a series of interviews with the Disabled Staff and Faculty at UC Berkeley

Online is a critical disability accommodation for education access

The article below highlights how online and hybrid options are a critical but overlooked disability  accommodation that makes education accessible to many in the autistic/disability populations. 

https://www.onlinecollegeplan.com/can-someone-with-nonverbal-autism-attend-online-college/

"Communicating their needs is something that almost everyone with ASD struggles with so for someone who doesn’t communicate in a typical way, those struggles can be exacerbated, especially in school. "

"Colleges and universities across the country offer online programs and more and more of them are implementing support programs to help autistic students transition into college life more smoothly and to excel. These two things can come together and absolutely transform the future for students that can’t speak. The minimized interaction in a self-paced distance-learning degree program allows the student to focus on the things that they can do instead of having to consistently confront the things they can’t as they try to navigate their coursework. The support programs in place at many colleges are there for all students whether they are learning on campus or online and they can help to provide proper resources to students that need them, to help them stay motivated and organized, and to be there for the times that college gets to be a bit overwhelming. A nonverbal autistic student would be able to get the full college experience regardless of what method they chose to complete their degree, but it seems that online college would help reduce the stress of going to college and make communication between advisors, professors, and classmates a lot simpler."

I am here and I....

Article written in Jan for the Jeena Yahaan 2018 Brochure. 

-----

I am here and I...

I am here and I …am humbled.

What an amazing opportunity it is for me to go to UC Berkeley. Who would have imagined this significantly challenged autistic guy even going to college, let alone the #4 University in the world, a decade back. 

I am here and I...am in awe.

I am surrounded by brilliant minds and  learning from the best teachers in the world. UC Berkeley is steeped in history, tradition and world-changing accomplishments. Home of 16 elements of the periodic table (including Plutonium and Berkelium), 90 Nobel Laureates, even the site of a Nobel Prize Ceremony at Wheeler Hall. 

I am here and I...am inspired.

To protest, question and demand change is an unquestioned prerogative of Berkeley Students. 

This is where the Civil Rights Movement and where Free Speech Movement began. Berkeley is also the birthplace of the Disability Rights Movement. Ed Roberts started at UC Berkeley in 1962 even though they had no accommodations for the quite severely-affected-by-polio Roberts at that time. His efforts paved the way for others with physical disabilities and later individuals with developmental disabilities.  He started the very first Disabled Students Program in the US right here. 

I am here and I.. feel supported.

No one questions my intelligence or my capability to learn in a classroom with 1000 other students. A very significant shift from my special-education days. At Berkeley, I am met with courtesy and respect from Professors and students. Rather than a traditional narrow focus based on the confusing autism diagnosis, accommodations are made to work around my functional limitations and help me be successful. I am having fun too.

I am here and I.. am galvanized.

I took up Psychology as that is the study of the human mind and behavior. I plan to minor in Disability Studies. I want to use the knowledge I gain and channelize it into advocacy and research such that it will contribute towards improving the quality of life for individuals like me. Going to Berkeley will earn me a seat at the table. I can bring about shifts in attitude and change. I can be part of the decision making about us disabled individuals instead of others deciding our fate.  

I am here and I... am the tiny minnow.

I would be lying if I said Berkeley was not stressful. Academic expectations are high and the work pace is frantic. The campus is a vast ocean to navigate and I feel like a tiny minnow being swept along. I have felt out of my depth many a time. I would like to do a lot more but I can often feel just overwhelmed.

I am here and I..thank the cosmic hand.

I really wanted Berkeley. Undoubtedly the cosmic hand is at play in my journey though many of the solutions are still shrouded in fog. I can only hope that the fog thins out so the road ahead is clearer.  At the end of the day, we all wish to be productive and contributing members of society.