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/





The Myth of Bodies that are Normal vs DIsposable.


The Myth of bodies that are "Normal" vs "Disposable" !!
 
My article on the documentary film ‘Fixed’ panel discussion that asks why some bodies are considered ‘disposable’. Part of Superfest's #NoBodyIsDisposible
 
 
 
 
Documentary film ‘Fixed’ panel discussion asks why some bodies are considered ‘disposable’

Superfest, the longest-running disability film festival in the world, screened the first of its #NoBodyIsDisposable film series June 18, Regan Brashear’s documentary “Fixed: The Science/Fiction of Human Enhancement.”

“Fixed” provides thought-provoking insight into the social and bioethical questions around the use of enhancement technologies. On the surface, there seem to be immense benefits to these technologies (such as bionic limbs and exoskeletons), which can significantly improve a disabled person’s quality of life.

At the same time, the film raises fundamental questions about accessibility and affordability. Who gets to decide what is “normal” when it comes to the human body? As research and technology continue to evolve, won’t the idea of “normal” itself become a moving target? The “normal” body of today could well be the disabled body of tomorrow. And when do we cross the line on using therapeutic technology to help, versus enhancing human ability or even creating a class of super humans, a sort of “better than well”?

The film also posits that ableism and cosmetic surgery are eerily similar — for both, you need to change your body in order to fit in. The film is quick to point out that, from a disability rights perspective, the problem is not the body itself but the social disregard and lack of integration for that kind of body by society.

The film screening was followed by a panel discussion with prominent disability justice activists on how race, disability and size influence which types of bodies are considered “disposable,” especially in light of recent events such as the pandemic, or protests concerning police brutality.

Panel moderator Nikki Brown-Booker, the program officer for Borealis Philanthropy, started with an observation on the prioritization of spending for expensive enhancement technologies, even as there was a shortage of personal protective equipment earlier this year and a lack of community programs to keep people with disabilities out of institutions.

Panelist Valerie Novack, board president of the Partnership for Inclusive Disaster Strategies, drew attention to the countrywide systemic racial inequalities exposed in recent times. Novack felt that many people automatically assumed that they were safe from COVID-19, while old and disabled bodies were deemed “disposable.” Novack also noted the disproportionate amount of Black people in Chicago who have died from the coronavirus, highlighting the common thread with racial inequalities.

The second panelist was Max Airborne of the NoBody is Disposable coalition, which has intersected fat people, disabled people, older people and people of color. Airborne highlighted that when COVID-19 hit, states started forming triage guidelines for hospitals, which specifically disadvantaged fat people, old people and disabled people from getting care. Airborne added that the language of comorbidities often disguises this denial of care.

In addition, though the connection is not obvious, Airborne stressed that it is important to understand that anti-fatness can actually be a smoke screen or loophole for anti-Black racism. This is because fat and disabled people both exist in higher ratios in Black and Indigenous communities. Airborne cited scholar Sabrina Strings’ work, which concludes that fat-hatred emerged as a function of anti-Blackness and that European colonists did not want white people to develop “Indigenous” bodies. The norm had to be close to whiteness, thinness, youth and health, according to Airborne.

Silvia Yee, attorney at the Berkeley-based Disability Rights Education and Defense Fund, spoke of the profound ways in which law and social change interact. She said laws are important because they allow us to incorporate our collective social values into what the law says. Yee pointed to the recent ruling by the U.S. Supreme Court protecting LGBTQ+ employees from workplace discrimination; she noted that a possible factor behind this decision was the fact that the justices live in a world where 82% of the public supports LGBTQ+ civil rights protections.

Yee added that while law and social change can inhibit each other, they can also bring to life certain ideals of the people who live in the society and who have a different vision of the world: a world not ruled by inequality or stereotypes of the worth of an individual.





 
 

Happy Father's Day

Happy Fathers Day to
my best bud, top 2 fan and best dad aways rooting for me



Poison Plant Unmasked


I am the power plant. I am the poison plant 

… I build, I destroy

 Fundamental Duality of Life

… Knowledge interlaced with ignorance


My siren call lures good men adrift

A sip or two...whole bottle it is

Beautiful dreams lie in my arms

Long tresses caress the souls 

…. worry begone, courage untold, be free


For...

I am the power plant. 

I am the poison plant.

 I am legend


A slow drown in the murk 

I sing my siren song

You blindly trust me

I eat at your soul


For...

I am the power plant. 

I am the poison plant. 

I am legend


Alone. The siren is gone

Rotten carcass

Mighty price to pay

Poison Plant Unmasked


Glanced at words, easily forgot.


"The test of progress is not whether we add more to the abundance of those who have much, it is whether we provide enough for those who have too little. "- FDR Memorial



Lovely sentiments

Powerful messages

Set in stone, eons ago.


But what do we do?

We read, we admire... the words, the history.

We think we contemplate the meaning and grandeur of it all

We think we understand.

We really think we understand.

We really really think we understand.

We think we come away better folks.

Oh yes, we are now better folks.


But PRACTICE..... Oh No, that we do not. 

That we do not. 

Oh No, that we do not.  


Glanced at words, easily forgot.

Contorted, distorted. 

Boast on social media, then forgot

It's back to 'real' life, says the powers that be



RIP Fruit Files

RIP, Fruit Flies

RIP, ye wee beasties
Know your short life was lived not in vain
Young minds watched you metamorphosize
Wild types, sexing, and X-linked white eye
Mendelian 3 generations after fly napping you.
Science owes much to you.

Drosophila melanogaster , thy name
Fly Morgue in a Biology Lab...
... your final resting place
Or even better...
...in death rejoin the carbon chain.

The only regret, O most worthy Fruit Fly
You missed flying around real fruit!!

What would you say Abe?



Marble Lincoln 19 feet tall

Glory days etched on towering column and wall


Bothered not by milling crowds

Determination, Compassion

Bent in contemplative reflection

Witness of democracy

mirrored in the reflecting pool

Things of past, sights of present

and protests in between


I wonder....

What would you say Abe?

If you were now given a voice?


If you were given a voice?

What would you now say, Abe?