Collaborating on Anxiety in Neurodiversity





Over the summer, I was part of a Stanford Rebuilt Project - NDGifts (Neuro diversity, Giving Individuals full team success.). It was a collaborative effort by around 72 people from across the world. It is the idea of helping employers better understand ND so that ND folks also become part of the employment landscape. I wrote the section on Anxiety as Comorbidity of the 81 page report. 

Launch Event on 9/3/20 (From 0:52 mins) - on Youtube
Link to the Report: My section starts on Page 50 

I actually heard about this project from another recent Berkeley graduate, Cole, who is also part of this project. It’s been an unusual summer sitting at home, with rampant cabin fever.

There were many areas that Tiffany laid out that we could get involved in and frankly I was feeling a little overwhelmed at the beginning. I already deal with a lot of anxiety and this summer of pandemic has not been kind to many of us autistics in some ways and it has felt very oppressive and suffocating.

So I thought, why not take on the topic of anxiety as a co-morbidity and write on it. Writing can be cathartic and therapeutic as well as informational for others, and I have written on mental health in autism before.

Other topics I was interested in writing about was how neurodiversity is defined, how it is represented in the media and the whole special education system which is a mess with gatekeeping at every level. Had lots of thoughts on many of these things. Of course it's absolutely unrealistic to take on writing so many. So I focused on the anxiety part. But was able to add inputs to other different areas in the meetings.

Tiffany was also super helpful in funneling a lot of research articles my way as I was trying to set up the remote login to the Berkeley library system to access research materials. So that was super helpful.

Sometimes the hardest part is to get started and Nicole was really great on that and she outlined a nice framework to work within. It was great working with Nicole.

So the section is a combination of literature review of existing research and incorporating personal experiences to give it a human angle, that there are real people at the end of it reflecting liv’d experiences.

I think mental health is something that people have not quite understood, a kind of fuzzy logic. Sometimes it seems like the newest buzzword, to be used almost like a fashion accessory, which saddens me as it dilutes the needs of those who really have to liv with it.

Everyone also seems to assume that Mental health is a stand alone condition. So if you have autism, it must preclude anxiety. I think what we are trying to say is that anxiety is a very real thing, a very real co-existing condition, a very real comorbidity of neurodivergence.

If you think about it, Mental health is inevitable after years of feeling different, that you don’t belong, and being excluded. The nature of the neurodiversity itself, whether it's autism or ADHD or dyslexia or dysgraphia, can itself be a source of anxiety as can environmental factors and societal attitudes. We go into explaining these in the report. It does not matter if the disability is very visible like in my case or invisible as in the case of many others, each has different anxieties around it.

I have both learned from and enjoyed writing this section as well as reviewing and providing feedback to other sections.

I think one of the surprising ironies of this pandemic, or rather its bright lights, is that zoom has been able to connect us to people from around the world. It was amazing to hear different perspectives across times zones and across continents. So we were zooming and working off the same google drive and it did not matter that we were literally crossing physical oceans.

As an autistic I have a huge personal stake in seeing improvements across the board for our community. I tentatively attended the first meeting and found an important area was being targeted, getting employers to understand what neurodiversity was about.

You see, you can implement all kinds of laws to mandate equitable access to employment, but laws will not translate to anything as long as employers feel uncertain and uncomfortable about what they are dealing with.

It's no use just telling employers that they need to be doing this for the greater good because everyone needs to be included. They will always find a workaround to not go into unknown employee territory if they don’t understand what accommodations can look like or that there can actually be advantages to them. Neurodiversity is a huge spectrum which can make it seem overwhelming but it can also be a spectrum of un thought of skill sets that can be harnessed.

I had another stake in this project in that some faces in the neurodiversity populations such as autistics with higher support needs, are less visible even to general society, and therefore less visible to employers as well. For instance, I’m not the image of what you imagine a college going autistic would look like. But why should individuals like me be a rarity in the college world and hence the employment world. I wanted to give a voice to this population as well, that we exist and have skills to contribute too. And we can create win-win situations.

It stands to reason therefore that as potential employers learn about neurodiversity, they will become more amenable to including all of neurodiversity in the employment arena. We can help employers get over this fear of the unknown and find out that perhaps we are all not so different after all. I believe this project is a step in expanding understanding and kind of demystifying neurodiversity.

Simple really, from my point of view as an autistic. All of us, whether abled or disabled want to be contributing members of society. We all need to wake up to something meaningful every day.






Anxiety as Comorbidity By Nicole Seaward & Hari Srinivasan

Over the summer, I was part of a Stanford Rebuilt Project - NDGifts (Neuro diversity, Giving Individuals full team success.). It was a collaborative effort by around 72 people from across the world. It is the idea of helping employers better understand ND so that ND folks also become part of the employment landscape. I wrote the section on Anxiety as Comorbidity of the 81 page report.
Link to the Report: My section starts on Page 50. Here it is again for reference. 

Anxiety as Comorbidity in Neurodiversity

By Nicole Seaward & Hari Srinivasan 

Reviewed by Kamel Webster 

Overview of Anxiety 

Anxiety is a universal human experience that triggers the impulses to fight, flee, or freeze. Symptoms of anxiety include “persistent feelings of restlessness, irritability, difficulty concentrating, sleep disturbance, fatigue, nausea, diarrhea, and muscle cramps” (Bandelow, Michaelis, & Wedekind, 2017). Anxiety is the result of both biological and environmental factors. “Childhood adversity, stress, or trauma” contribute to the development of anxiety disorders with the age of onset being around eleven (Bandelow, Michaelis, & Wedekind, 2017). Anxiety can be extremely intense and result in illness and lost time at work or from school. Chronic, pervasive anxiety is often characterized by excessive worry, rumination, and anticipatory anxiety. This generally results in avoidance behavior which reinforces anxious feelings (Riordan & Singhal, 2018) and can impact one’s participation in daily life. While optimal anxiety increases performance, too much can have a detrimental impact, and when left untreated, anxiety can cause significant functional impairments (Riordan & Singhal, 2018). When one is experiencing anxiety, the state of arousal can be so distracting that learning and memory are negatively affected (Riordan & Singhal, 2018). Furthermore, anxiety can disrupt relationships as well as social development (Riordan & Singhal, 2018). Common treatments for anxiety include both therapy and pharmacological treatments. It is important to identify and treat severe anxiety, but also to recognize the occasional benefits of anxiety in its milder forms. 

Autism Spectrum Disorder (ASD) 

Anxiety is common in those who are autistic as a result of sensory sensitivities, societal expectations, disclosure, and camouflaging. The illustration by Halim, Richdale, & Uljarević (2018) below provides a succinct overview of the many causes of anxiety in autistics. Estimates of the co-occurrence of anxiety and autism range from 40% (Rosen et al., 2018) to 48% (Smith, Ollendick, & White, 2019). Furthermore, research has shown that the added presence of anxiety can significantly impact quality of life (Smith, Ollendick, & White, 2019). Autistics prefer routines and when one is disrupted this can cause significant stress to the individual. Therefore, the management of the “intolerance of uncertainty” is an important factor in addressing anxiety in autistics. (Hwang et al., 2019).

In addition to the factors noted above, there are various ways in which the social environment can cause or exacerbate anxiety in autistic individuals. One of the authors of this section, Hari Srinivasan, has autism, ADHD and Dysgraphia. He can testify to the pressure of constantly trying to fit into “normal” societal expectations beginning in childhood. Since the societal “normal” itself is ill-defined, it is akin to chasing a moving target which is a constant source of stress. The result is constantly facing gatekeeping at every step, be it in education, social opportunities and in the field of employment. Autism can be both visible and invisible both of which can contribute to anxiety in their own way. For instance, Srinivasan’s autistic traits, with atypical body mannerisms and limited speech, are very visible. Therefore, disabilityrelated stigma may exist, whether overt or subtle, from employers and co-workers from the start. Those with an invisible form of autism face the dilemma of trying to camouflage their autism or disclosing their disability in order to avail of the ADA accommodations; either choice contributing to anxiety. In addition, a common misconception is that autism somehow magically disappears in adulthood, when in reality, years of therapy have only served to ‘mask’ some of the more overt atypical mannerisms. This means that anxiety associated with being autistic continues into adulthood though the intensity of anxiety may well depend on an individual's physiology and resilience. 

Untreated anxiety will negatively impact entering the workforce, sustaining employment and enjoying the quality of life one expects from productive employment. Another author of this section, Nicole Seaward experienced autistic burnout after too many years of camouflaging and trying to fit in as “normal” in the workplace. Seaward experienced daily panic attacks and anxiety related to work that eventually became too much and she temporarily lost many of her executive functioning skills making independent living difficult and working impossible. Autistic burnout is still a new term and is characterized by “chronic exhaustion, loss of skills, and reduced tolerance to stimulus” (Raymaker et al., 2020, p. 136). Autistic burnout has serious consequences that can be reduced when the proper supports are in place and the individual no longer feels the need to hide their autistic traits (Raymaker et al., 2020).

Attention Deficit Hyperactivity Disorder (ADHD) 

ADHD presents varying degrees of challenges in the areas of hyperactivity, inattention, impulsivity, concentration, productivity, memory, and focus. Comorbid and ‘hidden impairments’ are common among those with ADHD, including anxiety (Adamou et al. 2013). In fact, nearly 25% of children diagnosed with ADHD had some form of anxiety disorder (Bilgiç et al., 2013). Many of the challenges associated with ADHD “generate anxiety-provoking situations” (Bilgiç et al., 2013). Individuals with ADHD may struggle to maintain their focus which can impact task completion. Their memory might be poor due to being distracted while intaking information and learning. In other studies, a physiological link has shown that anxiety in the ADHD population correlates with lower neural activity or poor performance with visuospatial working memory tasks (Meer et al., 2017).

Srinivasan points to his experience of ADHD as a cause of anxiety. In his case, ADHD can mean an impulsive fidgeting body, which society does not regard as an appropriate social mannerism. There are also some internal conflicts when ADHD is combined with autism - ADHD can mean a certain need for newness (easily bored) which conflicts with “sameness” that the Autism desires. Depending on the situation, environment and topic, attention itself can go from hyper focus to inattention. The level of body activity too can go from hyperactive to hypoactive. Having to navigate the terrain of a potentially unaccepting social or workplace environment on top of the uncertainty of your own body reaction creates for constant anxiety laden scenarios which affect productivity

Dyslexia 

Anxiety is often higher in dyslexic individuals due to the near constant challenges related to learning, subsequent feelings of inadequacy, and fear of failure (Carroll & Iles, 2006). Dyslexia is marked by challenges with writing and reading, along with functioning memory, processing speed, organization, and time management. As a result of these challenges, dyslexics are associated with “depression, anxiety, lower self-esteem, and often, behavioral problems” (Livingston, Siegel, & Ribary, 2018). Weak reading skills can contribute to lower academic achievement which has shown to lead to an increase in levels of social anxiety (Carroll & Iles, 2006). Negative emotions from living with dyslexia can contribute to “lower self-efficacy and competency relating to work, and increased work anxiety” (Livingston, Siegel, & Ribery, 2018, p.126). The challenges of dyslexia start in the early years of education, continue into adulthood and can impact success in the workplace. 

Dysgraphia

Dysgraphia can be developmental or acquired through injury and is characterized by difficulty with the physical act of writing or typing due to challenges with fine motor skills (Tafti & Abdolrahmani, 2014). Difficulty with gripping a writing utensil, typing written words, discerning units of language (especially new words), and managing working memory contribute to frustration and low self-esteem (McCloskey & Rapp, 2017). Furthermore, when an individual is focused entirely on writing words, they are not fully able to concentrate on learning and therefore can fall behind. The experiences of repeated failures, bullying, and loneliness associated with dysgraphia are tied to increased levels of anxiety (Biotteau et al., 2019). As mentioned above, feelings of anxiety lead to avoidance behaviors and this can result in the dysgraphic individual opting out of experiences that will increase their education and chances of engaging in fulfilling employment.

Srinivasan offers an explanation of his experience of dysgraphia as related to motor apraxia, motor memory, motor planning issues and even dysregulation in the ability to form a body schema. There is more to writing than just the ability to grip and pick up a pen or pencil and scribble on paper. There is a lot of motor planning involved, in what direction the hand should move, by how much, at what angle, the font size, and the spacing. These tiny adjustments can be hard for a person with poor fine motor skills. A whole sequence of movements go into writing each letter. A poor body schema means the brain is constantly trying to keep track of where the hand is in space and time on top of the other tasks involved. For a typical person, these movements are embedded in their motor memory, making the writing task automatic, but motor apraxia and poor body schema means that such sequences of motor movements take much longer or do not make it into the motor memory. So, the act of writing itself ends up as a laborious task of having to motor plan all over again each time and distracts from the attention and thinking processes. Srinivasan can see the letters in his head but is never quite sure if he will be able to pen it on paper, which leads to tremendous anxiety. He says his motor instinct is to write his name, as that is an activity he was made to do over and over again in his special education years. When compared to writing, the act of typing, though it has its own challenges, seems a relatively easier motor task, as it requires the press of just a single key for each letter most of the time.


All neurodivergent individuals are unique, though anxiety seems to be common to many of them (Tafti & Abdolrahmani, 2014). Individuals may not be aware that their work performance or behavior is being impacted by anxiety. Deficits in social interactions and transitions are a challenge for many who are neurodivergent and may further contribute to anxiety. There is also a great deal of stigma with neurodiversity, which creates anxiety around disclosure and impacts emotional health (Livingston, Siegel, & Ribery, 2018). By understanding and accepting the challenges associated with neurodivergence and working to increase self-advocacy, employers can reduce employees’ stress and anxiety. The goal is an accepting, welcoming environment, creating a win-win for both employers and neurodivergent employees. 

Life’s challenges include facing the uncertainty of societal expectations, in addition to dealing with autism’s core features, such as sensory sensitivity, repetitive behaviors and sameness behaviors, and other less discussed issues like lack of a body schema and poor fine motor skills in Srinivasan’s case. He feels that anxiety is a very real and often unacknowledged comorbidity of neurodivergence, though the intensity of anxiety may depend on an individual’s diagnosis and resilience. While anxiety management and coping techniques can be useful, helping employers understand neurodiversity and create an accepting workplace may do even more to develop resilient employees. The neurodivergent mind, when nurtured in the right environment, has much to offer in the workplace, including creativity and innovation

Model Hari !!

So I'm now a Model :)

What's Next. 

Have to say, being at Cal is a more interesting experience. 

I was so tickled by the idea when Cal Student Store sent me an email just before college started. 

An alternate career path in my future. LOL




This is the 2nd set. 





Going High

How powerful is this!!!

“When others are going so low, does going high still really work?” My answer: going high is the only thing that works, because when we go low, when we use those same tactics of degrading and dehumanizing others, we just become part of the ugly noise that’s drowning out everything else. We degrade ourselves. We degrade the very causes for which we fight.

But let’s be clear: going high does not mean putting on a smile and saying nice things when confronted by viciousness and cruelty. Going high means taking the harder path. It means scraping and clawing our way to that mountain top. ....

And going high means unlocking the shackles of lies and mistrust with the only thing that can truly set us free: the cold hard truth." - Michelle Obama 2020

Potential and Possibilities through a Disability Justice Lens

 https://youtu.be/O5Ky7kFT7SQ



Prerecorded YouTube Presentation









Registration for Autism DeCal Fall 2020 is now open

 

Registration for the Fall DeCal is not open. (classes.berkeley.edu)

  • Enroll through CalCentral 
  • One Unit 
  • Meets M 5-7pm PST. 
  • Start Date: 8/31/2020
  • DeCal Instructors: Hari Srinivasan, Eli Oh, Helen Lee, Kate Bierly

When a President Mentions You

OMG OMG OMG OMG OMG OMG....
I got mentioned on President Barack Obama's Instagram. Total honor. too thrilling.


Verified

As we continue to celebrate the 30th anniversary of the Americans with Disabilities Act, I thought I would share the stories of three young activists leading the charge in the disability rights movement. Storm, Hari, and Noah are working in their communities––at their schools, places of work, neighborhoods––to advocate for a future that is more inclusive and accessible for all people.

Through storytelling, Storm uses her work as a producer to expand representation in the media. She wants to make sure that the stories of people in the Deaf community––one that she’s proud to be a part of––aren’t ignored. As a student studying Psychology at UC Berkeley, Hari educates his peers by sharing his experience as a minimally speaking autistic while teaching a semester-long class on autism. While working as a coordinator for Chicago Adapt, Noah founded an organization to advocate for disability rights for international, first-generation, and immigrant students with disabilities.

Change happens from the ground up––and these three are leading the way in their communities.


------
On Reddit




Happy Birthday ADA

How can I miss out posting this photo. Total highlight of the visit for the three of us. President
Barack Obama
, Thank you for being such a huge ally of the disability community.
Happy 30th Birthday ADA, - Hari of the ADA generation

With friends Lia & Rebecca at Smithsonian American Art Museum during my visit to DC last year for the The Autistic Self Advocacy Network ACI training.
Image Description: Three young college age autistics, black haired, wearing glasses, of average height and of various genders proudly standing next to a portrait of President
Barack Obama


Happy Birthday ADA


Pointing to the person who signed the ADA. with friends Lia Cohen-Odiaga and Rebecca Long at Smithsonian American Art Museum during my visit to DC

A good start but not the end: -

"Let the shameful wall of exclusion finally come tumbling down." - President George HW Bush, on signing the Americans with Disability Act, July 26, 1990
 
Happy 30th Birthday ADA - Hari of the ADA generation


Superfest Film Shorts

https://www.dailycal.org/2020/07/24/superfest-film-shorts-panel-examine-increasing-visibility-of-disability-in-mainstream-film/

My article in the Daily Cal on SuperFest's film shorts screening event, and discussion on the increasing visibility of disability in mainstream cinema.


Title: Superfest film shorts, panel examine increasing visibility of disability in mainstream film

Superfest, the world’s longest disability film festival, continued its ADA-30 celebration with Disability Pride Philadelphia by screening film shorts that provide a no-holds-barred glimpse into the diversity of disability.The screening on July 10 was followed by a panel discussion of the films’ impact in the current landscape and the growing momentum of disability visibility in mainstream film.

Now celebrating 20 years, the first film short, “Disability Culture Rap,” was the creation of the late Cheryl Marie Wade, a cultural arts poet performer, disability rights activist and UC Berkeley alumna. Even as the powerful words of the lilting rap sweeps the audience through the disability rights movement — of which many campus alumni have played a huge role — a diverse range of disability voices unapologetically enlighten the audience on disability culture: “It's about who we are...Its about power...it's about freedom!!”

As panelist Lawrence Carter-Long remarked, most media around disability seems to beg to be included and accepted, but “Disability Culture Rap” gets in the audience’s face and demands that they see “disability on disability’s own terms.” Carter-Long is the current communications director at the Berkeley-based Disability Rights Education & Defense Fund and heads their Disability and Media Alliance Project.

The 2016 short, “The Barber of Augusta,” is about a young man who had been diagnosed with ADHD and conduct disorder. Still, he finds his way to connect: he wears a superhero costume and harnesses his superpower of cutting hair, particularly for the homeless, on the streets of Toronto at night.

The avant-garde 2014 “Bastion” leaves the audience in almost a state of wonderment. A bald man had caught sight of himself in a shop window and, having decided he needed a haircut, gets a haircut from the barber inside and even pays him for the cut.

Panel moderator and Superfest coordinator, Emily Beitiks, explained that “Bastion” had opened as an installation piece at an art gallery, where viewers sat in a barber chair in the middle of the room and watched the film playing in surround sound. What made it exciting for Superfest was this film short’s stealth approach to including disability by taking a nuanced perspective. The lead character is played by an autistic, though disability never entered the conversations around the movie at any of the mainstream festivals where it was screened.

The next animated 2014 short, “The Chili Story,” was directed by Patty Berne, co-founder of the Bay Area-based Sins Invalid project, which focuses on disability justice in the performing arts. The short itself is a humorous and ironic take on taboos both inside and outside of disability.

The 2015 “The Right to be Rescued,” set in the aftermath of Hurricane Katrina, highlights the dire need for cities to include the needs of people with disabilities in their disaster management plans. One such heartbreaking story is the late Benilda Caixeta, a wheelchair user with muscular dystrophy, abandoned by her driver, who tells her, “I can’t come and get you, I’ve got my own family to worry about.” Her friend narrates how their phone conversation is cut short as flood water from the broken levees rushes into Caixeta’s home.


The final short was the 2012 “Everything is possible.” It follows Agustine, a Honduran wheelchair user due to childhood polio, who had been painstakingly building a helicopter, piece by piece, from scrap material since 1958. Reactions to him range from admiration to derision even as people around him say his task is impossible.

The panel discussion then turned to the recent momentum of disability now becoming part of mainstream film in a way it had not been previously. Panelist Ajani Murray, who is both an actor and public speaker, felt that this was because the world had become smaller. With streaming services and social media such as YouTube, artists did not have to go through big studios and television anymore. As Carter-Long remarked, “You can’t put the genie back in the bottle now... (People are) getting hip to the idea there’s always been a disability history, there’s always been disability culture. And they are starting to wonder why they didn’t know about it.”

In response to an audience question on how to close the gap and educate the world, Murray explained that while policy and law can be hard to understand, art is “understandable and palpable.” Cater-Long added that artistic mediums are a good way to sensitize people by getting to their heart first before getting into laws.

The panelists also had advice for aspiring filmmakers in the audience. Screenwriter Matthew Alazic urged filmmakers to “create content and put it out there. Take advantage of the fact that the ability to record content is in everyone’s pocket now.” Murray stressed the importance of community and networking in order to do so, while Carter-Long left the audience members with this assurance: “There is a history and a lineage and a community out here that’s got your back.”



Co-moderating a Judy Heumann Event








Got to be co-moderator at a webinar conversation for AAC users with the one and only Judy Heumann for AAC users organized by Communication First.


What can I say - she is just too incredible.



My Introduction of Judy Heumann at the Webinar (complete with image description). 


Hi. I’m Hari Srinivasan. I’ll begin with an image description of myself as that is another important accessibility feature for the disability community at large. Just another illustration of how accommodations come in many shapes and forms depending on your specific disability.


I’m a young college going male in his 20s of Indian American origin and with brown skin. I have short black hair and am wearing a yellow and blue cap with the word cal on the front. I’m wearing a dark blue shirt with the word Berkeley on it. I am sitting at my desk in front of my mac laptop in my room at my home. Behind me on the wall and on my closet door are various college banners and posters with words like University of California, Berkeley, Cal, Golden Bears, or catchy phrases like This is Bear Territory or Bear Den. Enter at your own risk.


We have with us today Judy Heumann, who in President Obama’s words, has helped bring about incredible change in this country and around the world. Judy is also featured in the recent documentary, Crip Camp, produced by the Obamas. During a surprise appearance at one of the virtual crip camps that are now going on, President Obama described the film as the story of a bunch of disabled teens who by getting together, awakened to their power to start a global movement for a world that would treat us with dignity and respect.


What had begun as a personal journey for Judy to overcome the obstacles in early education turned into a civil rights crusade, where she led 150 people with disabilities in the 5 o 4 Sit-in, the longest sit-in in U.S. history, lasting 28 days at the San Francisco federal building.


Can you just imagine?. Till then disability rights were not even thought of as civil rights!.

Section 5 o 4 is widely regarded as the first disability civil rights legislation.


Judy helped set up both the Center for Independent Living in Berkeley as well as the World Institute for Disability which focuses on policy issues.


Judy was also involved in the passing of most of the important disability legislation we know today such as the Americans with Disabilities Act, and United Nations Convention on the Rights of Persons with Disabilities and Section 5 o 4 of the Rehabilitation Act.


If my generation has a shot of being included in the education system today, it was because of laws like the Individuals with Disabilities Education Act that was set in place by giants like Judy.


Judy has been both an activist and government policy maker, serving kee roles in both the Clinton and Obama Administrations as well as the World Bank. Her social media platform, The Heumann Perspective explores intersectionality in disability rights.


And earlier this year Judy published her long awaited memoir, “Being Heumann, an unrepentant memoir of a disability rights activist.” The book is a must read. What is remarkable is that so much of her story is our story too. For example on page 21 is a line that goes. “I was conscious of feeling dismissed, categorized as unteachable and extraneous to society.” That experience is unfortunately still a reality for many of us A A C users today.


In the movie, Crip Camp too, Judy remarks, “We are being sidelined,” and I remember thinking, that’s still so true. It's deja vu!!.


I will just echo President Obama’s words when he said that Judy’s resume is just too long to list.


I have to add that I am so super proud to attend U C Berkeley, where giants like Judy created disability rights history. Last year I had the privilege of interviewing Judy for the Daily Californian. Not wanting to make an utter fool of myself, I was preparing by reading everything I could about her. There are over 460 pages of just her oral interviews alone in our library’s disability history archives. And a ton of other information online. Wow. I even had my questions looked over by my disabilities studies Professor, Victor Pineda, just to be sure I was not putting my foot in my mouth.


Any conversation or interview with Judy is never one way, she asks you questions right back. So it was a good thing I had done some homework. Along the way I was not quite sure who was interviewing who. I walked away in a daze that day. The final 2200 word article could not quite do justice to the conversation we had that day.


Judy had described fortitude as her personal strength during the interview. OMG, she is very much the Chingona or bad-ass girl that her husband calls her.


How do you manage to pull together this incredible non-stop amount of energy, Judy?.


And isn’t Judy’s virtual zoom background so appropriate and mysterious. She came riding in from the infinity of space. At the end of the call, we will see her ride back into that infinity


We hope to bring you all into this amazing conversation with Judy today. I expect she will have questions for the audience today as well.


====
Icing on the cake.... she remembered me... 💕

And Hari, you are an emerging star.
You are so great with your words, and when you ask me to be -- when you asked me to be interviewed for your article, I was not knowing what was going to happen, and it was a great experience.
Both as a Berkeley graduate, but also as a disability rights leader yourself.
It was great to be able to partake in that discussion.

Recording should be up on the Communication First website soon.




When a President Drops in


Not every day when a President drops in on a Zoom Call and begins with an image description of himself. #CripCampVirtual @BarackObama "This is Barack Obama.And I am joining you from my home in Washington, D.C. I'm sitting at my desk. I'm wearing a denim shirt and behind me is a book case with books and photos of my family and there's a picture of me swimming in Hawaii which is where I was born and my hair is much grayer than it was just a few years ago.

And then President Obama brings on his guest, the only and only Judy Heumann

Absolutely unexpected appearance but absolutely amazing. Read on....

When a President does an Image Description on a Zoom call
Hari Srinivasan 
It's not everyday when a President drops in as a surprise guest on a zoom webinar and begins with an image description of himself. Image Description is an important and much needed accessibility feature for many in the disability community. 
“This is  Barack Obama and I am joining you from my home in Washington, D.C. I'm sitting at my desk. I'm wearing a denim shirt and behind me is a bookcase with books and photos of my family and there's a picture of me swimming in Hawaii which is where I was born and my hair is much grayer than it was just a few years ago.”
The event on May 28, 2020 was the Crip Camp 2020, the official Virtual Experience, a webinar series focusing on community building for activists and advocates in the disability justice space. The virtual crip camp experience is considered almost an extension of the documentary Crip Camp, which in President Obama’s words is the “story of a bunch of teenagers at Camp Janed who left camp thinking they could lead a worldwide movement for disability rights...saying to each other that if we worked together, we can make a difference and create the kind of world that treats us with the dignity and the respect that we deserve and recognize as our talents and our gifts and our power and our ability to achieve extraordinary things” 
And these teenagers did just that with the likes of Judy Heumann who led the longest sit-in US history at the SF federal building in 1977 to get the Section 504 regulations signed. Barack and Michelle Obama were executive producers for the film Crip Camp under their Higher Ground Productions banner. 

President Obama said the movie had been important to both him and Michelle Obama as they had wanted to give a platform to lift new voices that were underrepresented in the media, inspire people to get involved in their communities and pass the torch to the next generation of activists and city leaders. President Obama stressed that every movement begins with ordinary people coming together to make their voices heard. He pointed to the last few months as a testament to the fact that young people are still ready to make a better America and a better world. When people get involved they recognize their own power. 

President Obama had celebrated the 25th anniversary of the Americans with Disabilities Act (or ADA) while in office and reminded everyone of the hard work and sacrifice it took as we approach the 30th anniversary of the ADA this year. 

“Most of the problems we face are not going to be solved by any single individual or even any single group. We're going to have to work together. The question is then how do we find those bonds and that sense of common purpose that allows us to really have an impact and make a difference,” said President Obama during the Q&A session that followed. 

He went on to add that the starting point in building allies and movements was to recognize our first identity as that of a human being.  Tapping into this empathy, this commonality of fellow human beings, would be what compels you to regard a fellow human being to be of equal worth as you and make common cause to make sure that person isn't feeling that way. Progress happens when this perspective spreads to the entire nation and is reflected in our values and public policies.

President Obama was quick to acknowledge that being from a majority community he could not possibly understand everything a person with a disability could go through, but he hopes to be a fellow traveler on this planet as we all figure out how to promote more justice and kindness in the way we treat each other.

On the issue of balancing activism work with the practices of self care for longevity, President Obama had some advice. The first was to recognize that we cannot do this alone, we cannot sustain our task unless we develop and maintain relationships of friends outside of work; the people who laugh with us and will support us and pick us up when we are down.  

The second was to recognize that you will not be effective if you are run down. Even if you have greater demands on your time to maintain health it is not a sign of weakness, rather a sign of strength that you recognise what it takes to make you more effective. 

The third thing was while people in the fields of public policy, organizing and social work were not in it for the money, it was important to not be taken advantage of by the organizations you worked for. You are working hard, so you need to be paid a living wage, you need to be able to pay your bills, have health care and be able to take a vacation. 

The final piece of advice by President Obama was maintaining perspective for, as he points out, change rarely comes quickly. He stressed that you have to work on what is immediate but also have that longer term perspective which will help you be more forgiving of yourself. Change is not a sprint, rather a marathon relay where you will have setbacks, and may even have to compromise at times. We take the baton from people before us, run the best we can with it, and then pass it on to the next person. 

President Obama then brought his own guest to the webinar, Judy Heumann, who he introduced as, “somebody I have admired, who has helped to make unbelievable change …[and] who's resume is too long to list.” 

He went on to ask Heumann to give her perspective on the relationship between social activism and the government passing legislation as she has worked in both areas. President Obama felt both were a continuum though he acknowledged that young people often feel disappointed at the seeming slowness of government. 

For Heumann, the stories told in Crip Camp showcased the great potential which society had not seen or let happen. According to her, people don’t know these stories because the media has not been covering disability appropriately or involving people with disabilities in telling these stories - whether in advertising, children’s books, television shows, documentaries or movies. 

She added that what was valuable about these Crip Camp sessions was that people were speaking to each other and sharing information which can have a powerful impact. She also stressed the importance of collaboration and coalitions, cross-disability, cross-civil-rights and human rights in this process. 

Heumann also underscored the importance of inclusion of people with disabilities in both the private and public sectors. “It was one thing to be able to talk broadly about the types of discrimination we were experiencing but then we needed also to be able to become specialists. We needed to learn how laws were made. How policies are developed. How they're implemented,” said Heumann

She really appreciated that the Obama Administration had seen the importance of inclusion and bringing disabled people into the government.  Both Heumann and Obama expressed their disappointment at the failure of the 113th congress to ratify the Convention of the Rights of Persons with Disabilities (or CRPD) during her time in the State Department under the Obama Administration.  Heumann hopes that if a new administration is voted in, one of the first issues that will be worked on is to get the CRPD ratified so that the US can join the other 181 nation signatories. 

As exciting as the presence of the distinguished guests had been, it was time to move on. Part of the Crip Camp experience included fireside chats led by disability Inclusion specialist and Camp director Andraea LaVant, where participants were asked to reflect and journal questions such as, “When did your disability advocacy journey start and how can able-bodied folks be better accomplices in disability advocacy?”

LaVant brought on camp guides Neil Carter and Sarah Blahovec to speak on the topic of civic engagement and your role in this movement. Carter is the founder of Nu View Consulting which has been spearheading political outreach campaigns. Blahovec is a disability advocate and political consultant from Elevate, which focuses on disability civic participation and voting rights.

The guides explained that civic engagement is essentially anything you do to make a difference to the civic life of your community and is valuable whether it happens from the comfort of your home or in public. Civic engagement can happen both inside the system such as by government officials or outside the system such as political campaigns that try to effect change. In order to decide which type of civic engagement to choose, you may have to look to your passion, your skillset, whether you are an introvert or extrovert who likes talking to people and how much free time you have without burning the candle at both ends. 

Carter and Blahovec gave practical examples on how to engage in civic engagement beyond registering to vote and going to vote. Write to or meet your legislators, as legislators are supposed to listen to their constituents, volunteer for community organizations, write an op-ed for your local newspaper or national paper, attend local government meetings such as the city council and school board. 

You could also join a political campaign from the local to national level and get involved in activities like phone banking or join committees. You could share and sign petitions through change.org, or join mutual aid groups to help your community as we have seen during this pandemic. 

An idea that is central to civic engagement is relational organizing - which means talking to your family and friends and getting them to do something. Both camp guides stressed that when it came to civic engagement there are roles for literally anyone. 

You could also run for political office. If you are a first time disabled candidate, there are programs like the Elevate program for training. They advise first timers to get involved in other campaigns to understand how it works as it is a tremendous undertaking. You could even start small like running for your local school council. 

A case study both Carter and Blahovec wanted to highlight in light of the recent protests was Black disabled lives who have endured police brutality. Unfortunately even in discussions of popular stories the fact of them being disabled is not mentioned. 

Carter and Blahovec then spoke of the obstacles to civic engagement. A lack of civility, yelling and lack of reasoned discussion only alienates the public. Lack of access to buildings or awareness leaves many people disillusioned. Then there is informed engagement, for instance some people are inaccurately saying that ADA allows you to not wear masks. Then of course for people with disability, there is a dearth of role models.

There is also a lack of civic and political skills which is tied to our underfunded education system, so children are not learning about what is happening in the country. Which is what makes the non-partisan #CripTheVote movement, so important, so that we can engage in an important and productive discussion about disability issues in the US. The hashtag, which went viral, is used to promote policy ideas and engage with elected officials both at the national and local levels. 

The Camp series which started in June and continues till August, covers a wide range of issues and speakers. Information on how to participate and recordings of previous camp sessions can be found at https://cripcamp.com/officialvirtualexperience/