The role of the autistic in research

Thoughts around autistic people leading research rather than only participate by giving accounts of lived experiences.

I think rather than talking about one autistic or neurotypical being the leader, which seems to imply a position of dominance by one group, we should be thinking more in terms of what Judy Heumann used to term as Collaboration Cooperation. Both disabled researchers and non disabled researchers need to work together for meaningful change. And most research is a team effort anyway. What the non disabled researchers bring to the table is a lot of experience in how to go about research and they’ve had a couple of centuries of head start in this. When you combine this with collaboration and leadership of autistic researchers you get the following added benefits.

1. Autistic insights through a nuanced understanding of autistic experiences that cannot be fully captured by observation or second-hand accounts. 
2. Innovative approaches through distinct cognitive and perceptual experiences. This can lead to innovative research methods and findings that might be overlooked by non-autistic researchers. 
3. Increased relevance and application towards practical and relevant issues. 
4. Empowerment and representation as autistics in leadership, challenges traditional narratives of them only being research subjects. 
5. Reducing bias in data interpretation from a neurotypical lens. 
6. Building trust among autistic participants that this research is likely to be ethical and beneficial.  
7. Policy and practice impact as autistic researchers are more likely to advocate for changes that directly improve the lives of autistics. Their leadership in research can influence policy, educational practices, and therapeutic approaches in ways that are more aligned with the needs of the autistic community.

PD Soros Fellow at Vanderbilt PhD Neuroscience

Can a person feel stunned+super excited AND nervous+disoriented all at the same time. 

It's a veritable sea of emotions swirling inside me. 

The news is rather surreal as I am in the final weeks of undergrad at Berkeley.

Two pieces of news actually.

I’m heading to a PhD Neuroscience at Vanderbilt in fall 2022.

# neuroscience #vanderbilt  #PhD  #Berkeley #Psychology

&

I join the prestigious ranks of the PD Soros Fellows, 2022.

@PDSoros

https://www.pdsoros.org/meet-the-fellows/hari-srinivasan

Who would have imagined this back in 7th grade middle school - special ed classroom where they still were teaching how to spell basic words like c-a-t. The school district had no intention of allowing me anywhere close to any sort of mainstream curriculum or a mainstream classroom. Their nod to mainstreaming was my being allowed to exist in the same school playground with non disabled kids at recess and lunch. Somehow we were expected to pick up skills, perhaps by osmosis, in that crazy noisy environment of screaming running kids

I lost count of the number of special ed classrooms I’ve been moved around during my elementary and middle school years - tossed from one unwilling special ed teacher to another. Imagine the psychological trauma inflicted on a very young child when educators, the ones who are supposed to support and nurture you, themselves don’t want you. Children don't get to attend their IEP meetings, but sometimes these meetings are held in the classroom after school with a classroom aide babysitting me at one end. I remember one such meeting with the special ed teacher loudly insisting I be moved out of her classroom. In kindergarten alone, I was moved 4 classrooms. 

I also remember being in this classroom for sometime in between which was simply called Room 20 at Dilworth Elementary, which was a placeholder for all the special ed kids the district didn’t know what to do with. So the day was mostly walks, story time, circle time - like kindergarten on Groundhog Day repeat day after day, even at age 10.  Anyway, by middle school I had been moved to a segregated special ed only school where I never got even that glimpse of any non disabled peers.

For much of my schooling years, education was like the candy in the candy store with me staring longingly at it through the store window.

It’s surreal, It’s like I’m now making up for all those years and years and years of sheer longing for education, years and years and years of missed education with compounded interest thrown in. It’s the sheer contrast of Room 20 to Berkeley. 

I am incredibly amazed at what quality education can look like at UC Berkeley. The experience gels perfectly with my inherent curiosity and thirst for knowledge; I am continually reflecting on what is taught in my classes and on its multidisciplinary applications. Berkeley is giving me an amazing experience academically with 4.0 GPA, Phi Beta Kappa, Psi Chi, my own research, research labs and also other opportunities like writing for the Daily Cal and teaching an Autism Class. (And yes, it ok to brag some, at times like this)

My 7th grade special ed did not lead to a high school diploma let alone college. Today I stand on the cusp of a PhD program. Just imagine me in a doctoral program! 

More than anything, it was really really really really really really really (can I add a few more "really's") a balm to the soul to hear PhD programs say they “wanted me” and that I was an unanimous selection by the departments.

(I think back on all the special education teachers who did not want me in their classrooms).

The PD Soros fellowship is this extra unexpected icing, a validation - that my life too has worth and I too can be a contributing member of society. That I am thought to be amongst those, “poised to make significant contributions to U.S. society, culture, or their academic field.”  That I too can rank amongst the best of the best.

Getting my picture in the New York Times, is kinda cool too.

The road ahead is still fraught with uncertainties and transitions and there will be many things to navigate and trouble shoot in the next few years of grad school. It is going to be a harder journey given all challenges around my motor apraxia, communication/ behavioral /sensory challenges & anxiety. Fingers crossed for continued patience and understanding from others around me. 

Today is a day to celebrate, to stop, admire and smell the roses of today. I don't think I am that flexible to actually reach my back so I will  give myself that imaginary pat on the back and say,

PD Soros Fellow @ Vanderbilt PhD Neuroscience from fall. Way to Go Hari!!

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News Coverage of Award (link)

Social Media

So nice of Dr Josh Gordon (NIMH Director) to announce news of Vanderbilt and PD Soros at the beginning of the IACC meeting. 

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I should frame this tweet as inspiration and aspiration. 

Words of praise from the legendary Judy Heumann. 

Thank you Judy for your words of praise. We all learn from you and strive to add those additional tiny pebbles that contribute to widening the ripples in the pond of change. 

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Tweet from Prof Allison Harvey, who taught my Treatment of Mental Illness class 

I was a research assistant in her Golden Bear Mood and Sleep clinic for 2 semesters.

Thank you Prof Harvey for your invaluable advice, support and encouragement during the grad school application process. 

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I made it the cover of Berkeley News

Made it to page 5 of the New York Times

ADA 32 in DC

Was a honor to be part of group invited to attend formal reception hosted by Vice President Kamala Harris at her residence, Naval Observatory, in DC, to celebrate ADA 32 and get to meet and interact with so many luminaries. 

What can I say. OMG.

Photo 1: Vice President Kamala Harris and Mr Emhoff.

Photo 2: Attorney General Merrick Garland

Photo 3: Senator Tom Harkin (who was chief sponsor of the Americans with Disabilities Act in 1990)

Photo 4: Got to meet my hero in-person, Judy Heumann, the legendary disability civil rights activist. In deepest admiration and awe of the grueling efforts of her generation that helped open the doors of inclusion and opportunity for the current generation of disabled folks like me.

Photo 5: Me just hanging out with the flags, quite wide-eyed at my surroundings and the people I was surrounded by and got to interact with. Was honestly quite stunned to receive a White House event invite.

(Image Descriptions: work in progress....)

 

HEW sit-in continues - Disabled vow long fight

Daily Cal Headlines ... April 11, 1977: 

"HEW sit-in continues - Disabled vow long fight." 

from Day 6 of the nearly month-long sit-in.

highlights:

CeCe Weeks said: "It's the first militant thing we've ever done. There is a new political movement throughout the land. We're going to stay till we're dragged out."

Although HEW Secretary Califano said he would sign the revised regulations, Kitty Conetalks about how those are inadequate and called upon President Carter to sign the original regs immediately as he had promised he would do.

State Director of the Department Of Rehabilitation Ed Roberts (former CIL Director) said "We've got to keep up the pressure."

Demonstrators Mary Jane Owen and then-CIL Deputy Director Judith Heumann had gone on a hunger strike.

Donations were pouring in from "such politically dissimilar groups as the Black Panthers and Safeway stores, McDonald's and the United Farm Workers. 'We couldn't do this without the support from outside," Cone said. 'We're really excited by the community's response.'"

"We're basically happy and strong," Weeks said. "There's more energy here all the time," she said.

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That was indeed a time. The attached photo is a scan from a book of about 100 Daily Cal front pages: "The Daily Californian's Best of Berkeley 1960-1980, publ by the Independent Berkeley Student Publishing Company, 1980.

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Daily Cal photo caption:

“The nearly 100 protesting disabled staged a sit-in [to demand the passage of the long-delayed Regulations implementing section 504 of the 1973 Rehabilitation Act] at San Francisco’s HEW Office.”

Section 504, the first disability civil rights act, Required nondiscrimination of people with disabilities by end of the end by any entity receiving federal funds.

These Regulations became the model for the Americans with Disabilities Act 13 years later, which prohibited discrimination against people with disabilities in virtually all areas of public life.

ASA Press Release

https://autismsociety.org/press-release-autism-society-of-america-is-calling-on-congress-to-address-national-issues-facing-the-autism-community/

 I get quoted in this press release.

The Autism Society of America is taking direct action at a national level on multiple priority issues that impact Autistic individuals. In particular, the organization is highlighting the importance of passing legislation that provides additional funding for home and community-based services (HCBS) and addressing employment disparities. This includes the Better Care Better Jobs Act and the HCBS Access Act.

“The current system of supports and services are set up such that there can be a sudden stop in services for the most absurd of reasons. Such policies need to change,” states Hari Srinivasan, an Autistic student at Vanderbilt, and member of the Autism Society’s Council of Autistic Advisors. “I find myself in this strange situation where the PhD stipend makes me ineligible for SSI, which in turn is linked to all state-funded disability supports and disability health insurance that I have relied on all my life. My significant Autism challenges and required supports, did not magically go away in graduate school. It is like a financial penalty on the disabled person to want to aspire for higher education and the pursuit of the American Dream.”

I want to relate this back to what the late Judy Heumann said in her 2019 interview with me for the Daily Cal [post on unedited longer interview], [Daily Cal article]

"There is currently a huge legislative disincentive for people with more significant disabilities who depend on services — such as Medi-Cal health insurance, Social Security and personal attendant services — from being productively employed. She does not want to hear stories similar to that of her friend who had to turn down a job she was well qualified for because of the fear of losing these crucial services. She would also like to see legislative policy changes so that employers see disability as just another diversity category." - Daily Cal 11/26/19

Judy, My Friend: A Tribute to an Unparalleled Disability Rights Legend

Judy, My Friend: A Tribute to a Disability Rights Legend

Judy my friend, I miss you dearly

But your legacy lives on, ever so clearly

As a trailblazer, a hero, a friend

Your spirit will never, ever end

Which Mind Bodies have Access to the Land?

Last semester I took Prof Sunaura Taylor's Env Science Policy & Management, Disability Studies course. In Prof Taylor's words, "This course centers the body as a key analytic to understanding the more-than-human world." An absolutely intriguing course. 

My Final Project

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San Francisco - Which Mind Bodies Have Access to the Land?

Key Idea How postmodern cities (like San Francisco) are built for white, wealthy, able-bodied people and how inaccessible cities can be, including accessing “nature”

Eduardo Jacobo and I teamed up for this project and have looked at San Francisco from a few different perspectives as has been discussed in class: what constitutes Natural Beauty, the concrete jungle nature of the built environment in terms of accessibility (eg: city of slopes with some of the steepest roads in the world) and more. Which mind-bodies have access?

Our (Project) Creation Story

I have always felt uneasy and out of place in big cities; a trip to the beach is so much more enjoyable to me than going inside buildings, no matter how magnificent they are. My initial idea for the project was a big city or maybe a marketplace in India since I was there (the India idea came later but I’d already started working with Eddie by then). When Eddie initially mentioned he would be taking photos of San Francisco, it sounded like a perfect collaboration as it would add visuals to my thoughts on aspects of San Francisco I had in mind - I was especially interested in photos/visuals of steep roads, the manmade Golden Gate bridge juxtaposed against nature, walking in the shadows of tall skyscrapers and displaying the inaccessibility of the built concrete jungle. The plan thus was that he would take the photos and I would write a poetry-prose narrative around them. (We will each be handing in a separate personal reflection expanding on these ideas in the context of what was discussed in class.)

In addition, “collaboration-cooperation” was all the more relevant for me given that this was a disability-studies class. I’d first heard of this term during my interview with Judy Heumann for the Daily Cal, (Srinivasan, 2019) and it has stuck with me since.

“Collaboration-Cooperation” The legendary disability rights activist Judy Heumann stresses the importance of “collaboration-cooperation” (within and outside disability)  in order for us to be moving forward. This team effort between Hari (disabled) and Eddie attempts to carry forth this spirit of “collaboration-cooperation.” Extending this relationship to the land.

We can extend this “collaboration-cooperation” to the relationship we humans need to have with the land we exist on and our fellow non-human and nonliving things. It has to be a treaty with the land, following in the footsteps of the Skywoman; the indeginous struggle is really a struggle for all earth given that the mess we’ve managed to make of the earth.

“If we, collectively, want to fight climate crises, then we need to reclaim land-based ethics….driven by the immediate needs of the land, not peoples….Indigenous peoples are cueing others to recognize an earth-centered metaphysic, an interconnected and sentient reality...Indigenous peoples are not only still fighting for their land, they’re fighting for the protection of all lands” (Avalos, 2021)

A Land Acknowledgement.

Photo Credit: Eduardo Jacobo

We acknowledge that the city of San Francisco sits on the unceded, ancestral homeland of the Ramaytush Ohlone peoples who are the original inhabitants of the San Francisco Peninsula.

Before the missionaries and the White man

Lived peoples of Ramaytush Ohlone 

From the time of Sky Woman.

Treaties with living and nonliving.

Harmonized with the land.

Everything, a cherished relative.

Imprisoned, All but wiped out presently.

“It is good to remember that the original (Skywoman) was herself an immigrant… It was through her actions of reciprocity, the give and take with this land, that the original immigrant became indigenous,” ( Kimmerer, 2016).

Though I was born here, as the child of immigrant parents, one is almost thought to think of America as primarily a White culture that has always been here. Only after coming to Berkeley, have I realised how important a land acknowledgement is to the original immigrants, while keeping in mind that this is but a starting point.

Even today, one of the fundamental aspects of settler colonialism is to superimpose their culture and ideas on top of indigenous culture so the new ways became the right way, and the old ways the wrong ways that needed to be eliminated and forgotten. In America this took the form of multiculturalism which meant indigenous people were reduced from treaty-holding independent nations to yet another minority that supposedly contributed to America's greatness with their giving spirit, (Dunbar-Ortiz, 2015).

“The US Constitution apparently had no power to protect the homelands of indigenous peoples… But the Constitution did explicitly protect the land rights of citizens who were individual property owners,” (Kimmerer, 2016).

The real picture - the lovely San Francisco, like the rest of America, was not the result of dialogue or “giving,” but a takeover. It was the result of the, “looting of an entire continent and its resources,” (Dunbar-Ortiz, 2015), and genocide of its original immigrants and the systematic stripping of their culture, language, and identity. Of the 1500 families of the Ramaytush before the missionaries arrived; only one family lineage survives now, (ramaytush.com).

“So much was scattered and lost… graves of half the people. Language. Knowledge. Names.” (Kimmerer, 2016).

I think of the woods in San Francisco named after John Muir who showed great concern for the plight of bears, yet was quick to label the Indians of Merced Valley near Yosemite as “dirty and irregular,” and callously dismissive of their systemic genocide as he tried to attract the white tourist, “As to the Indians, most of them are dead or civilized into useless innocence,” (Purdy, 2015).

In this context I wanted to add something that used to confuse and lend to identity confusion as a child - why was everyone who was “brown-ish” called Indian? I’m of Indian (the country) descent; India used to be a bunch of kingdoms till the British clubbed them as India; the name given in the Independent Indian constitution is actually Bharat. India was the East Indies, Caribbean nations became the West Indies; Columbus set out in search of India and its spices and labeled the indigenous people of the US as Indians. Did everyone Brown and ‘native’ become the “other” body, clubbed as ‘Indian’ by the Global North?

San Francisco from the Air

Photo Credit:Hari Srinivasan

Delightful lights of San Francisco below

City by the Sea

Row after row of twinkling city lights

Lights that glow as the plane flies low

Expanse of the Pacific Bay with its Golden Gate

.....Dominate the landscape

San Francisco is said to be,

The most picturesque of US Cities. 

Just full of natural beauty!!

When you take a birds eye view of San Francisco, I have to wonder what the birds flying above think of our cities. After reading about the disruptive impact on wildlife due to the lights at the border wall, I wondered about the impact of the ever increasing lights of the growing cities on the birds, perhaps disrupting their flight patterns and food sources.

Photos Credit:  Eduardo Jacobo

But what is this natural beauty? What is natural?

… Is it that giant red steel bridge on the Pacific we call Golden Gate?

… Is it the row of neatly arranged houses on the hills?

… Is it the homes built from trees stripped from Oakland woods?

… Is it the manicured lawns of Golden Gate Park? 

… Is it the small pieces of forest we have left untouched (for now)?

Have we redefined natural beauty to mean manmade rearrangements?

What mind-bodies do we see? Who has access?

When I think of nature, it is the personal growth advisor and your BFF. You see it inside, outside and all around. Nature is felt, not just seen; the human body is deeply enmeshed in nature. But what is natural? We seemed to have blurred the difference between natural, unnatural and manmade (Cronon, 1995).

Accessing Nature

Photos Credit: Eduardo Jacobo

Image Credit: goslides.com

A site for sore eyes

Blue and green with white sands in between. 

Toes crunch in sand as waves wash the feet

But which mind-bodies get access to this feat?

San Francisco was built to leverage the “natural” beauty all around, but as we discussed in class, much of our landscapes, vista points and other places of “natural” recreation was created with the White, wealthy families with mobility (cars) in mind.

But why should the suburban, upper-middle-class have a monopoly on mobility? The white John Steinbeck could easily visit and rave about the beauty of Montana in his book, “Travels with Charley”. This contrasts to what we read in class about Black families being scared to visit traditionally White spaces like national parks, (Kafer, 2013). Even MLK was turned away from a national park. It is not without irony that Steinbeck had written about watching out for accidental bullets hitting people during hunting season in Montana. The White settlers had traditionally regarded the BIPOC and disabled body as inferior and disposable; imagine being in the path of dozens of trigger-happy, gun-toting White hunters during hunting season in any state.

“African Americans are much less likely than whites to find parks and open spaces welcoming, accessible, or safe; histories of white supremacist violence and lynchings in rural areas... advertisements for outdoor gear have, in turn, tended to cater to overwhelmingly white audiences,” (Kafer, 2013).

It is not without concern that all over the Bay Area (including SF), many beaches are private access only. The same can be said of Maui, where local islanders were discussing on a TV program how beach access was restricted by the growing number of resorts. The islanders, like the Indigenous Indians, were being made foreigners in their own land.

“The natural environment is also “built”: literally so in the case of trails and dams, metaphorically so in the sense of cultural constructions and deployments of “nature,” “natural,” and “the environment.” (Kafer, 2013)

And access trails to these nature spots and scenery don’t keep the disabled in mind. How would my 75 year old grandma who has an iron rod in her leg be able to access the beach pictured in the photo above?

“Steep, narrow, and root-filled trails are barriers not just for people with mobility or vision impairments but also for some seniors and families with young children,” (Kafer, 2013).

Millions are spent in making such places accessible to the White and able-bodied. These paths and trails are regarded as reasonable and natural. Yet the little adjustments needed to provide the same access to the disabled are termed unreasonable, unnatural and even damaging to the environment. As Kafer points out, is the imagined motorized wheelchair as disturbing to the birds as the hundreds of people on that path talking loudly on their cell phones?

“What is deployed is the “disability-equals-alienation-from-nature trope,” where by equating cars with motorized wheelchairs, the “motorized wheelchair becomes the epitome of technological alienation, of technology’s ability to alienate us from our own wild nature and the wilderness around us,” (Kafer, 2013).

Not only do the disabled not get to enjoy or access nature, they are also expected to keep quiet, not complain and be preferably unheard. They are even told they are selfish, a presumption that the wheelchair user must be damaging to the environment compared to the other hikers.

“... the hiker’s access to parks and wilderness is natural, but everyone else’s (those in “motorized wheelchairs,” for example) is political, debatable, and ideally stoppable. To tell a tale of a lack of appropriate access—no trails wide enough for a wheelchair or level enough for crutches—would be to insert the all-too-human into “the wilderness,” thereby violating the persistent dualisms between the human and the natural and the natural and the political,” (Kafer, 2013).

The Built Environment

Photos Credit: Eduardo Jacobo

A City of Slopes

San Francisco, a city of slopes

… 31 percent grade is Filbert St

… 29 percent grade is Jones St

.... many many such more.

What mind-bodies do we see?

Slopes, who gets to navigate?

Photos Credit: Eduardo Jacobo

Footsteps on the steps

What of the SideSteps & UnSteps?

What about Me?

How are stairs, any form of share?

When it comes to chairs?

(Clipart Credit: GoSlides.com)

Photo Credit: Eduardo Jacobo

Photo Credit: Eduardo Jacobo. 

We call this beauty?  A Concrete “Jungle”?

A bay and a bridge and patches of green

A concrete jungle in its midst

Pretty patterns of concrete indeed. 

“Nature-rize” with a jungle suffix

In the boulevards of downtown San Francisco

Shadows of skyscrapers are all you see. 

Are we Spiderman to jump building to building?

What Mind-bodies do we see?  Who has access to this land?

Kafer (2013) points out that social arrangements shape our “natural” environments, which is also built. Much like the vista points and natural parks, postmodern cities (like San Francisco) are built for White, wealthy, able-bodied people which marginalizes the disabled mind-body, rendering such spaces inaccessible. Kim (2018) too points out that the “public infrastructure system is more invested in the flow of capital than the well- being of the least powerful, the disabled bodies.”

There are many types of access issues, architectural access is just the beginning. For example, crowded cities with neon lights are sensorily hard to handle for autistics like me, as is walking in the shadows of tall buildings where you can barely see the sun. I was especially interested in including photos of the steep roads of San Francisco - some slopes in San Francisco for me are utterly scary and daunting.

Photo Credit: Eduardo Jacobo

Spencer Battery

Vestiges of WWII Machine

Manned Guns protected the city

Kept clean even today.

No entry allowed for nature’s stray vegetation. 

A historic relic, blatantly man-made.

Spencer Battery (a place I am yet to visit) is a historic landmark that housed 12 guns used by the military to protect the city before the time of WWII and has remarkable views of the Golden Gate Bridge backdrop. Eddie had an interesting observation in that it is kept clean of stray vegetation. Ergo, it's now considered part of “natural beauty” but “nature” (i.e. vegetation) is not allowed.

Kafer (2013) points to Linda Vance’s essay on how eco-protection in cities with green spaces is ableist as access is correlated with loss, inability, and limitation.

“What is needed in ecofeminism, ecocriticism, and environmentalism in general are the narratives of people whose bodies and minds cause them to interact with nature in nonnormative ways…. presents alternative ways of understanding ourselves in relation to the environment, understandings which can then generate new possibilities for intellectual connections and activist coalitions,” (Kafer, 2013).

By shifting our perspectives, (which I hope will become a reality) we will find that the human built environment actually offers an opportunity for justice, for both human and non-human beings on this Earth and the land.

References

• Avalos, W. (2021, April 29). Land-Based ethics and Settler solidarity in a time of Corona and revolution. Retrieved Apr 27, 2021, from https://arrow-journal.org/land-based-ethics-and-settler-solidarity-in-a-time-of-corona-and-revolution/
• Cronon, W. (1995). In Search of Nature. In Uncommon ground: Rethinking the human place in nature. New York: W.W. Norton.
• Dunbar-Ortiz, R. (2015). The Land. In An Indigenous Peoples' History of the United States. Canada: Penguin Random House Canada.
• Kafer, A. (2013). Bodies of Nature: The Environmental Politics of Disability. In Feminist, queer, crip. Bloomington, Ind: Indiana University Press.
• Kim, J. (2018). Cripping East Los Angeles. Enabling Environmental Justice in Helena María Viramontes’s Their Dogs Came with Them. In S. J. Ray, S. Alaimo, & J. Sibara (Eds.), Disability studies and the environmental humanities: Toward an eco-crip theory. Lincoln: University of Nebraska Press.
• Kimmerer, R.W. (2016) Braiding Sweetgrass. Indigenous Wisdom, Scientific Knowledge and the Teachings of Plants”. Tantor Media
• Purdy, J., Kolbert, E., & Klein, N. (2015). Environmentalism's racist history. Retrieved Apr 27, 2021, from https://www.newyorker.com/news/news-desk/environmentalisms-racist-history
• Srinivasan, H. (2019, December 02). The Daily Californian: A conversation with disability rights activist Judith Heumann Retrieved Apr 27, 2021, from https://www.dailycal.org/2019/11/26/a-conversation-with-disability-rights-activist-judith-heumann/
• Ramaytush Ohlone. (n.d.). Retrieved Apr 27, 2021, from https://www.ramaytush.com/