Showing posts with label CripCamp. Show all posts
Showing posts with label CripCamp. Show all posts

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/





Crip Camp Conversations: Disability Leaders Respond to Coronavirus




The Best Audience Chat Comment undoubtedly was
"I feel like my life will now be measured as “pre this talk” versus “post this talk”. Thank you for this!" 

Amazing experience being on the panel for this webinar. Glad to be able to add value to this very important issue. 


I got several requests to share what I'd "talked" about in the webinar. 
Here are the slides and transcript of audio. 

Introduction 



Image Description. Young Indian American male sitting in front of a laptop. Black hair. Wearing a cap and T-shirt that say Berkeley.

Hi everyone. Thank you for having me here. My name is Hari Srinivasan. I’m a non speaking autistic. I type to communicate. I have a bunch of other challenges like oral-motor apraxia, ADHD, OCD, anxiety etc. 

I’m a student at UC Berkeley with a major in psychology  and minor in disability studies. 

This is my third semester as student instructor for a faculty sponsored semester long class on autism. I think of it as a way to change awareness in the way 30 students each semester will come to view disability and autism in their future lives. A majority of the students are non-autistic and able-bodied. We had a very interesting discussion on autism and covid-19 just two weeks ago. 

I’m also a student journalist for the Daily Californian. I get to write about many disability related issues which have included a column on autism. My two recent articles focused on social distancing and on healthcare issues surrounding the disability community during this pandemic. If you google my name and Daily Cal you should find links to these articles. 



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

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.