Hindsight is 2020

This doc is a work in progress as I try to trackback the far -from-ordinary year we've been in. Most of the year ended up being dominated by this microscopic virus which suddenly changed all that we took for granted in the world around us letting us witness both the worst of times and the best of humankind. And if I don't talk about the political landscape - that's intentional. It's too emotion for the mind to handle.

January

Jan 1, 2020 was the dawn of a new decade, a year where this century would leave its teen years and enter into the heady years of the 20s.  I even wrote a poem for 2020 and another one Daily Cal Renaissance Man for the Daily Cal.

I'd been very excited about the courses I was to take in Spring especially Human Happiness. I had heard Professor Dacher Keltner speak during my Golden Bear Orientation and had waited for the opportunity to take this course. I'd even done an interview with him for the Daily Cal (Towards a Life of Meaning). And what a terrific course it turned out to be. I was Back in Wheeler Hall, my fav lecture hall covering topics one does not associate with academics - awe, gratitude, empathy. I was in total awe. Even got a shoutout by Prof Keltner during one lecture which was thrilling.

Discussion sections were in Dwinelle Hall on Thursdays from 5 to 6pm. As I stepped out of Dwinelle Hall after the discussion section, I would be greeted by the music of the Campanile, playing its concert. It was truly Happiness happens at Six. It was going to be another great year.

I was taking a Business Class for the first time at Haas Business School.

I'd finished the CITI training required by the IRB for research with human subjects and joined Prof Harvey's Lab, Rhe Golden Bear Mood and Sleep Research Clinic as an RA. Back also at the RadMad Disability Lab, teaching the Autism Decal and being on the board of SpectrumAtCal.

February

My family and I, all came down with a bad case of the flu early Feb and were quite sick for over one after the other. One has to wonder if we had a version of covid that time itself.

Feb 3, I was invite to join the ASAN board.

My birthday falls in February. I got to both celebrate with the weekender team and also with my family at an SF restaurant. Little did I know that would be my last restaurant outing for the year.
The coronavirus had started making some waves and uneasiness was creeping into the air. At my SpectrumAtCal meetings one of the other board members mentioned how worried she was about her family and the situation in China. But it was still a far away event in the minds of people living here.

March

Mar 5: I presented live at UCSF CME 19th Annual Dev Disabilities Conf. A Growth Mindset - Reimagining Possibilities for Minimally Speaking Autistics . I remember being told to be very careful not to touch anything, shake hands and did not spend a moment longer than necessary at the conference site. 

The coronavirus lockdown "Shelter-At-Home" went into full swing right after. Students were asked to go home and campuses started shutting down. 

April 

Education transitioned to a world of boxed figures on a laptop screen. Students and instructors both struggled to understand this new mode of instruction.

How did I cope? 

• By writing about the Pandemic for the Daily Cal. #1 A Chilling Waiting Game #2 The Real Social Distancing. 
• Discussing the impact of Covid-19 on the Disability Community at Crip Camp Conversations 3  (along with the late Stacey Park)

Cole (Current President of the student body, Spectrum and Cal) and I worked on interviewing candidates for the AY 20-21 board position including that of President. While I had never actively sought the role of President of Spectrum, I somehow I found myself as its first nonspeaking President for the upcoming year. 

A silver lining: Carbon emissions dropped dramatically across the world. Animals were rediscovering terrain they had been driven out of before. Nature seemed to be coming alive. 

May

May brought the "shelter-at-home" finals exams but no relief with respect to the coronavirus. 
My grades: Still hanging onto that 4.0 GPA. 

June

In the larger world Black Lives Matter movement gathered momentum with the protests against police brutality against Blacks. A memorial at the end of my street to the fallen bears testimony. 

I found myself busy with other things too. I was attending the 13 week Virtual Crip Camp which was such an interesting experience each week. There were even after parties. 

I was in a Stanford Neurodiversity Design Workshop. 

I was part of a Supported Decision Making Focus group. 

I kept writing for the  Daily Cal: Fixed

July 

Jul 17:  I got the chance to co-moderate a conversation with the one and only Judy Heumann on AAC, disability policy, activism, and much more. AAC Users chat with Disability Rights Legend, Judy Heumann 

Articles in the Daily Cal: #1Authentic Representation in Media #2 Superfest Shorts

July 26.  Quite the biggest surprise of my life, I think. I got a mention on President Obama's Instagram, that too on the 30th anniversary of the Americans with Disabilities Act. 

August

8/13: I presented at the UCSB Disability Studies Initiative Summer Speaker Series. My presentation titled Potential and Possibities through a Disability Justice Lens  can be seen at the link.  

8/27: Just before college reopened I was in a Coronavirus Information Series with the Autism Society of America in a conversation with Chris Banks, President of ASA. College Advocacy and Beyond - Autism Society of America 

I start an internship with NeuroNav. 

Articles in the Daily Cal: #1ADA in Color , #2 Disability Visibility, , 

The fall semester at college was to be all online. To be frank, I was getting quite zoom fatigued already. 

My fifth semester leading the Autism DeCal at UC Berkeley. All remote this time. The classes were to be 2 hours long. So more lecture content was introduced. 

Even before its first formal board meeting, Spectrum at Cal was participating in the Mental Health Week events with 2 events of our own "Autistics Belong, An Intro to Spectrum" and "How to be an ally to Neurodivergents". More zoom meetings of course. 

September

California went through another year of crazy wildfires. Last year we were only affected by the smoke with a blanket of toxic air descending on us form fires up north. This year fires were close to home - a lot of places within the Bay Area evacuated. And with it the toxic air. 

Sep 9: Spectrum at Cal first Board Meeting for the semester. 

I co-authored this section from the Stanford Rebuild Project Anxiety as Comorbidity in Neurodiversity  which I had started towards the end of summer. 

Invited to be part of a Delphi panel by AASPIRE for an AutPROM Toolbox - a set of Patient-Reported Outcome Measures  that can be used to evaluate the effectiveness of services for autistic adults. What I enjoyed about this ex which ran through December was that it ran parallel to my Research Methods course which discussed the theoretical and statistical aspects of scale creation, so it was like seeing theory and real life application unfold at the same time. These are scales you read about in Psychology and I got see and comment on 50 of them. 

DeStigmatizing Autism: Conversation with Berkeley Seniors on their "Spilling the Cha Podcast" - where Eli and I discuss Spectrum StudentOrg , the Autism Decal and living with Autism.
Articles in the Daily Californian: The Social Dilemma. 

Articles in the NeuroNav Newsletter # Silver Linings & Creative Workarounds #  NeuroNav Launches SDP, # Meet Your Navigator Sabrina Kappe # The Making of a Social Impact Organization

October: 

SpectrumAtCal held its own Black Autistic Lives Matter event.

I presented at the Stanford Neurodiversity Summit. Hari As Possibility: College Track.
October is Disability Awareness Month and Daily Cal came out with their first every Disability Special Issue. Quite ironic given that UC Berkeley is considered the birthplace of the disability rights movement. But really it better late than never and I'm so happy I was able to really get this issue off the ground and play a huge role in it besides writing 2 pieces for it. 

Articles in the Daily Californian #1 Born into the ADA. # This is our Campus too. Disability in Higher Ed #3 Blackness, Blindness and Audio Description. 

Articles in  NeuroNav Newsletter #1 Vote because you can, vote because you should #2 The Future of a very tall very Berry Hibiscus #3 Designing Tools & Training for Independent Faciltators

Somewhere in between were interesting academic courses, midterms and two projects.

November 

The year seemed to be rushing towards an end even as the turmoil of the political landscape was mentally stressing and endlessly exhausting. 

A busy month with three personal events and a video 

Transitions to Adulthood - ASAN Gala Panel 

Log Kya Kahenge (What will people say!) - Abelism in the South Asian Community
ACL Panel. A cross-group campus event. 

A Video on Why I vote for Disability Rights CA. 

A fever pitch buildup to the Elections. 

Articles in the NeuroNav Newsletter #1 The Importance of Gratitude #2 Love Each Other and wear a Mask

Spectrum at Cal held its acceptance week with a Research Panel and a Policy Panel. 

December

Dec 2: Prof. Victor Pineda said he'd nominated me to be on the Doha Debates show - how can you turn down a request like that. This year Doha Debates with host Nelufar Hedayat, was running a #DearWorldLive series addressing critical issues around the globe. The  Disability Justice Special on Dear World Live  was on Dec 2, UN International Persons with Disability Day. I was the student voice asking questions of the amazing Judy Heumann and Haben Girma 

Doha Debates also asked me for a separate message for World Disability Day. Here is my message on Inclusion and Belonging. 

Dec 3: The Opportunity of Education - Speaker at Neurodiversity: A Paradigm Shift, Conf by University College, Dublin, Ireland (video not up yet) 

Two Projects due. For my stigma & prejudice class and one to be done all in R for my Statistics Class. 

I'm super proud of all that SpectrumAtCal has been able to accomplish this semester despite it being a remote semester. We also kicked off a new Peer-to-Peer Mentorship program by partnering with WeEmbrace amongst other things. 

Final exams: Yes!! with the 4.0 GPA intact. I love my courses at Cal. 

Dec 22: I play host with guest, ASA CEO, Chris Banks for Autism Society of America's Coronavirus Information Series Year End Recap.

Covid: US/World , Cases 18.3K/77.9 Deaths 323K/1.71M

The elections are over but why still so much uncertainty. 

Mentally it has been a rough year. I have felt that I may have regressed in some areas that are more obvious and in ways I am not quite able to define. 

In a way I'm glad I had a lot of activities and work to mentally occupy my mind, there have been some amazing silver linings for me this year, so I can't say that 2020 has been a total wash. 

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

Section 504

"No otherwise qualified individual with a disability in the United States... shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."

This one line powerful statement is the heart of Section 504 of the Rehabilitation Act of 1973, a landmark piece of legislation that laid the foundation for disability rights in the United States.  It was a groundbreaking step towards ensuring equal opportunities for individuals with disabilities in various aspects of public life.

The journey to its enactment and enforcement is a compelling narrative of relentless activism, dramatic protests, and the unwavering determination of a community fighting for their rights.

The Birth of Section 504

In 1973, the first federal civil rights protection for people with disabilities, Section 504 of the Rehabilitation Act, was signed into law. Section 504 specifically prohibits discrimination against persons with disabilities by any program or activity receiving federal financial assistance. This law was based on the language of previous civil rights laws that protected women and minorities, recognizing that society had historically treated people with disabilities as second-class citizens based on deeply held fears and stereotypes. These attitudes had translated into pity and persecution and later into policies that were based on paternalism.

Activism and the 504 Sit-in

Despite its promise, the implementation of Section 504 faced significant delays and resistance. Between 1973 and 1977, no regulations were issued to enforce it. During this period, strong regulations were drafted by attorneys in the Office for Civil Rights and sent to the Secretary of Health, Education, and Welfare (HEW) with a recommendation to publish them for public comment. However, opposition from covered entities such as hospitals, universities, and state and county governments led to much delay. The disability community filed a lawsuit in federal court, and the judge ruled that the regulations must be issued but did not specify when.

In response to these delays, the disability community mobilized. One of the most significant actions was the 504 Sit-in at the San Francisco Federal Building in 1977, led by activists like Judy Heumann and  Kitty Cone. This sit-in, which lasted 26 days, was the longest nonviolent occupation of a federal building in U.S. history. Kitty Cone, in her "Short History of the 504 Sit-in" on the Disability Rights Education and Defense Fund (DREDF) website, recounts the strategic planning and broad community support that sustained the protest.

Cone writes, "In the Bay Area, a broad cross-disability coalition, the Emergency 504 Coalition, began building for a rally on April 5th, knowing we’d sit in afterwards. We set up committees to take on different tasks such as rally speakers, media, fund-raising, medics, monitors, publicity, and outreach." The outreach committee's success in garnering broad community support from churches, unions, civil rights organizations, and others proved invaluable once inside the building. The Black Panther Party and Glide Memorial Church provided food, and the International Association of Machinists facilitated the transport of demonstrators to Washington."

The sit-in participants endured physically grueling conditions, sleeping on the floor and dealing with stress about their families, jobs, and health. Cone describes how all participants met daily to make tactical decisions in flowing, creative meetings that often went on for hours. This process was critical for developing consensus and a course of action.

Joseph Califano and the Regulations

The central figure of resistance within the government was Joseph Califano, the Secretary of HEW. Califano was reluctant to sign off on the regulations necessary to enforce Section 504. The activists' persistence, however, eventually bore fruit. Public pressure mounted, and the media attention garnered by the protests made it impossible to ignore their cause. On April 28, 1977, Califano finally signed the regulations, making Section 504 enforceable and marking a monumental victory for disability rights.

Impact of Section 504

Section 504 has had a profound impact on the lives of individuals with disabilities and on American society as a whole. Key outcomes include:

• Educational Opportunities: Section 504 has ensured that students with disabilities have access to educational opportunities and accommodations, leading to more inclusive schools and universities.
• Accessibility: The law has prompted public and private entities that receive federal funding to make their programs and facilities accessible to individuals with disabilities.
• Foundation for Future Legislation: Section 504 set the stage for subsequent disability rights laws, including the Americans with Disabilities Act (ADA), by establishing the principle that discrimination based on disability is illegal.

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

Neurodiversity Nuts and Bolts

Neurodiversity is a concept that views neurological differences as natural and valuable variations of human diversity. 

Inclusion and Exclusion in the Neurodiversity Paradigm

Neurodiversity primarily includes disabilities like autism, ADHD, dyslexia, dyspraxia, and Tourette syndrome, along with disabilities that are labeled psychiatric in nature . It tends to focus on conditions that affect cognition, communication, sensory perception, and behavior. Disabilities that are less often included in discussions of neurodiversity include those that are purely medical in nature or those that do not involve differences in neurodevelopment, such as physical disabilities like spinal cord injuries or muscular dystrophy.

Neurodiversity as a Social Construct

Neurodiversity is a social construct, meaning it is a concept that society has created and accepted to understand neurological differences in a positive light. This does not imply that neurodiverse conditions themselves are not real; rather, it highlights how society chooses to value these conditions. As a social construct, neurodiversity is useful in promoting a more inclusive view of humanity, valuing diverse ways of thinking and interacting with the world. However, like all social constructs, its impact depends on how it is applied and in what context.

Origins and Evolution of the Concept

While neurodiversity is often attributed to Judy Singer, who discussed it in a 1999 book chapter, recent research clarifies that the concept was a collective effort by many autistic activists during the 1990s. As highlighted in the 2024 paper "Neurodiversity Misattribution," the theory of neurodiversity emerged from discussions and activism within the autistic community, particularly on the "Independent Living" email list in the mid-1990s. These discussions were part of a broader movement of autistic self-advocates who aimed to shift societal perceptions and promote understanding and acceptance of neurological diversity. Correct attribution is important because it acknowledges the grassroots nature of the neurodiversity movement and the contributions of many individuals who worked to develop and promote the concept.

The concept of neurodiversity builds upon the foundation laid by the broader disability rights movement, which advocates for the inclusion and acceptance of people with disabilities as full members of society. This movement, which began gaining momentum in the 1960s and 1970s, challenges societal barriers and attitudes that limit the participation of disabled individuals and promotes the rights of disabled people to be fully included in all aspects of society.

The benefits of a Neurodiversity Perspective

The neurodiversity perspective draws upon important ideas from the wider disability rights movement, particularly its emphasis on inclusion, empowerment, and a strengths-based approach to understanding differences. These include.

Education and Employment: Neurodiversity promotes practices that accommodate diverse learning/work styles and neurological profiles, aligning with the broader disability rights movement's advocacy for adapting educational/workspace environment to meet the needs of all individuals rather than enforcing a uniform model.

Acceptance and Inclusion: By encouraging acceptance of diverse ways of thinking and behaving, the neurodiversity perspective helps reduce stigma and discrimination against neurodiverse individuals.

Strengths-Based Approach: By emphasizing the strengths and abilities of neurodiverse individuals, neurodiversity highlights unique talents, such as exceptional attention to detail or innovative problem-solving skills.

Empowerment: Through advocating for accommodations and changes in societal structures, neurodiverse individuals are empowered to participate fully in society, promoting a sense of belonging and inclusion.

Criticisms and Controversies

Despite its positive aspects, the concept of neurodiversity has faced several criticisms and controversies:

Exclusion of  the more-disabled individuals: Early discussions and formulations of the neurodiversity movement often focused on individuals who could advocate for themselves. This focus led to criticism that the movement did not fully address the experiences of those with more severe disabilities who might not be able to participate in self-advocacy in the same way. Over time, there has been an ongoing dialogue within the neurodiversity movement regarding the inclusion of individuals with more severe disabilities. Some advocates have pushed for a broader understanding that includes those with higher support needs, ensuring that neurodiversity represents a spectrum that encompasses all forms of neurological differences, regardless of the level of disability or support required.

Minimization of Challenges: Some argue that while the neurodiversity framework is empowering, it may inadvertently minimize the real challenges and needs that some neurodiverse individuals face, such as co-occurring conditions or the need for specific support and interventions.

Over-Romanticization: There is a concern that neurodiversity sometimes over-romanticizes neurological differences, ignoring the fact that for some, these differences can lead to significant difficulties that impacts their daily living.

Research on Neurodiversity

Research on neurodiversity spans a range of disciplines, including psychology, education, sociology, and neuroscience. The purpose of this research is to better understand the experiences and needs of neurodiverse individuals, to develop more inclusive educational and workplace practices, and to challenge existing paradigms that may not fully accommodate neurological diversity.

Other Disability Constructs that Neurodiversity aligns with.

Neurodiversity aligns with numerous other constructs in the broader disability world. Together, these constructs contribute to a broader understanding of diversity and challenge societal norms that marginalize disabled and neurodivergent people:


Mad Pride Movement: Challenges traditional views of mental health and psychiatric conditions, advocating for the rights and dignity of individuals with lived experiences of mental health conditions. It seeks to reclaim terms like "madness" and emphasize the value of diverse mental experiences, pushing against the stigma and discrimination faced by those with psychiatric disabilities.

In fact the name of the unique makerspace disability lab at UC Berkeley is "Rad Mad Disability Lab". It was a privilege for me to lead Team Propaganda during my years at that lab. 

The Social Model of Disability: Focuses on societal barriers rather than individual impairment, positing that disability is caused by the way society is organized, rather than by a person’s impairment or difference. It emphasizes the need to remove barriers in society—whether physical, attitudinal, or systemic—to enable full participation and inclusion of disabled people.

The Human Rights Model of Disability: Rooted in international human rights law, such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD), this model emphasizes the rights of disabled people to full inclusion, participation, and equality in all aspects of society. It advocates for societal change to eliminate discrimination and barriers.

"Disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life." - Judy Heumann (Disability Rights Activist)

I was also fortunate enough to work on creating ~40 case studies on low resource countries that have implemented the UNCRPD, as a research associate at Prof Victor Pineda's "World Enabled" 

Crip Theory: Challenges normative ideas of what it means to be "able" or "disabled," questioning societal norms about ability and disability, much like neurodiversity challenges norms about neurological functioning. Crip theory advocates for a more expansive understanding of diversity that includes all forms of bodily and neurological variation.

Disability Justice Framework: Expands on the disability rights movement by incorporating an intersectional approach, recognizing the interconnectedness of ableism with other forms of oppression such as racism, sexism, and heteronormativity. Disability justice highlights a commitment to recognizing and valuing diverse identities and experiences, advocating for a holistic approach that respects each individual's humanity and complexity.

Deaf Gain: Rather than viewing deafness as a loss or deficit, the concept of Deaf Gain frames it as a unique and valuable way of being in the world. This perspective highlights the benefits and cultural richness of the Deaf community, challenging societal assumptions about hearing and encouraging the appreciation of Deaf culture, language, and experiences.

Cultural and Linguistic Identity Models: Often used within Deaf and disability communities, these models emphasize the importance of cultural and linguistic identity as central to a person’s experience. They recognize that identity and culture, including communication styles and sensory experiences, are integral to the person and should be respected and valued as such.

Social Constructivist Approaches: Emphasize that many of the limitations experienced by disabled individuals are socially constructed rather than inherent to the individual. In disability studies, social constructivism explores how societal attitudes, policies, and environments create barriers to participation and inclusion.

Inclusive Research Paradigms: Prioritize the involvement of disabled people as active contributors or leaders in research that affects their lives. This contrasts with traditional research models that often exclude disabled people from meaningful participation. Inclusive research values the lived experiences of disabled individuals and ensures that their voices are central to research and policy development.

Nothing About Us Without Us: This principle, which originated from the disability rights movement, asserts that decisions affecting disabled people should not be made without their input and involvement. It advocates for the inclusion and leadership of disabled individuals in all matters that concern them, ensuring that their voices are heard and respected.

Relational Autonomy: Recognizes that autonomy and decision-making are often supported and facilitated through relationships with others, rather than being purely individualistic. In the context of neurodiversity, relational autonomy acknowledges that neurodivergent individuals may rely on supportive relationships to navigate social and systemic challenges while still maintaining control over their decisions and lives.


Essentially, while Neurodiversity has its criticisms and limitations, a neurodiversity perspective plays a crucial role in promoting acceptance and understanding of neurodiverse individuals in society. The alignment of neurodiversity with other constructs from the disability rights world underscores its importance in challenging societal norms and fostering a more inclusive and equitable world for all.

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/