New article In Psychology Today

How Reasonable are Reasonable Accommodations at Work

https://www.psychologytoday.com/us/blog/giving-voice/202410/how-reasonable-are-reasonable-accommodations-at-work

Feedback.

Yes, 100% agree with these important points - the problems with reactive enforcement, power imbalances, "neurodiversity lite" etc. Thank you for being a powerful voice in favour of change!!  

Another brilliant article Hari. I am sharing it widely too. The students in our autism certificate programs always love your pieces and refer back to them frequently in their reflections.

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.

ADA is 34 years old

Celebrating the 34th Anniversary of the Americans with Disabilities Act

On July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act (ADA) into law, marking a historic milestone for disability rights. The ADA has been instrumental in prohibiting discrimination against the disabled in all areas of public life, including jobs, schools, transportation, and public and private places open to the general public.

The journey to the ADA's signing was fueled by the relentless efforts of dedicated disability rights activists. One pivotal moment in this movement was the televised and widely viewed Capitol Crawl on March 12, 1990. Hundreds of disability rights activists gathered in Washington, D.C., to urge Congress to pass the ADA. As part of the protest, dozens of individuals with disabilities left their wheelchairs and crawled up the 83 stone steps of the U.S. Capitol building, dramatically demonstrating the barriers they faced in everyday life. Among them was an 8-year-old girl named Jennifer Keelan, whose participation powerfully symbolized the need for change. Her determination and courage, along with that of others, highlighted the urgent need for comprehensive legislation to protect the rights of people with disabilities.

Key figures in the disability rights movement played crucial roles in advocating for the ADA. The late Judith Heumann (we miss you Judy), a lifelong advocate for the rights of people with disabilities, was instrumental in the fight for the ADA. Her leadership and tireless advocacy helped bring disability rights to the forefront of national consciousness. Ed Roberts, known as the father of the independent living movement, also significantly influenced the disability rights movement, emphasizing the importance of self-determination and community-based support. There were countless others whose contributions were vital in making the ADA a reality, reflecting a broad and united effort toward equality and inclusion.

The ADA consists of five titles, each addressing different aspects of public life:

1. Title I – Employment: Prohibits discrimination against individuals with disabilities in employment and requires employers to provide reasonable accommodations.
2. Title II – Public Services: Ensures that people with disabilities have equal access to public services, programs, and activities, including public transportation.
3. Title III – Public Accommodations: Prohibits discrimination in public accommodations such as restaurants, hotels, and stores, and requires accessible facilities.
4. Title IV – Telecommunications: Mandates accessible telecommunications services, including relay services for individuals with hearing and speech impairments.
5. Title V – Miscellaneous Provisions: Contains various provisions, including protections against retaliation and coercion, and guidelines for the implementation of the ADA.

It's humbling that laws like the ADA enable disabled individuals like me to avail of opportunities such as getting into college or even embarking on a PhD journey. Such a thing would have been unimaginable earlier. The ADA's passage represents the collective effort and resilience of countless individuals who fought for equality and accessibility. As we commemorate the 34th anniversary of the ADA, we honor the legacy of those activists and reaffirm our commitment to advancing the rights and inclusion of people with disabilities. 

https://www.whitehouse.gov/briefing-room/presidential-actions/2024/07/25/a-proclamation-on-the-anniversary-of-the-americans-with-disabilities-act-2024/

Related Posts: [Disability Legislation], [Disability Rights], [Disability History] [Autism Cares], [ADA], [Capitol Crawl] [Olmstead Act], [Section 504], 

The importance of remote and hybrid options.

 https://www.vanderbilt.edu/autismandinnovation/2023/07/28/nise-fellow-hari-srinivasan-posts-op-ed-in-fortune-on-the-importance-of-remote-work-in-the-disabled-community/ 

This week, Neurodiversity Inspired Science and Engineering Fellow Hari Srinivasan published an article in Fortune entitled: "Flexible work critics are using the same arguments that were used against disabled ramps and closed captioning. Equity of access should never be optional."

 
In the piece, Hari discusses the arguments now being made to roll back remote work options developed during the Covid-19 pandemic, arguing that the reasons given for the roll-back are similar to those made for other accessibility accommodations in the past. Hari points out the irony that remote work was often seen as impossible before the pandemic, but overnight became feasible: "Pre-pandemic, we had been told that it was not possible or not financially viable. Yet these models ironically became "convenient" and "financially viable" overnight when the non-disabled world needed them."

 
He details the importance of remote work options (including hybrid conferences) for disabled and neurodiverse individuals.

The article, in its entirety, can be found here: https://ow.ly/pXXN50Pnk8l
#Neurodiversity #ASD #Disability #Autism #Access #Hybrid #RemoteWork #Accessibility #Equity #ADA

The Capitol Crawl

In the annals of history, there are moments that define the strength of the human spirit and ignite a spark of change. One such moment that will forever be etched in the hearts of millions is the remarkable "Capitol Crawl." On a day that exuded courage, hope, and determination, 150 passionate activists, including a young and incredibly brave 8-year-old girl, converged upon Capitol Hill to demand justice and the passage of the Americans with Disabilities Act (ADA).

Wheelchairs and mobility aids were cast aside, not in surrender, but in a powerful symbol of defiance against a society that had overlooked the rights and dignity of persons with disabilities for far too long. Crawling up the monumental steps of Capitol Hill, these extraordinary individuals weren't just making a physical journey; they were forging a path towards societal inclusivity, equality, and respect.
 

ADA 33

"It is hard for younger generations to imagine a world without the ADA, but before it existed, if you were disabled, stores could turn you away and employers could refuse to hire you. Transit was largely inaccessible. America simply was not built for all Americans, but courageous activists pushed to change that. In 1973, the Congress passed the landmark Rehabilitation Act, banning discrimination by any federally funded entity. Then, 17 years later, a bipartisan group of legislators persevered in passing the ADA, banning discrimination against people with disabilities in most areas of public life, from the workplace and public schools to public transit and telecommunications.

The ADA has had a profound impact, but we still have much more work to do...."

 https://www.whitehouse.gov/briefing-room/presidential-actions/2023/07/25/a-proclamation-on-anniversary-of-the-americans-with-disabilities-act-2023/

Happy ADA 33

 

Disability Rights Movement

The disability rights movement (DRM) refers to a social and political movement advocating for equal rights, inclusion, and improved quality of life for people with disabilities. The movement seeks to challenge and eliminate discrimination, stigmatization, and barriers that prevent disabled folks from fully participating in society.

DRM emerged in the late 1960s and gained significant momentum in the 1970s and 1980s. One of the key milestones was the passage of the Rehabilitation Act of 1973 in the United States, which prohibited discrimination on the basis of disability in programs receiving federal funding. This was followed by the Americans with Disabilities Act (ADA) in 1990, which further strengthened protections and rights for individuals with disabilities in various aspects of life, including employment, transportation, public accommodations, and telecommunications.

DRM focuses on promoting the principles of accessibility, independence, self-determination, and inclusion. It advocates for reasonable accommodations, accessibility in the built environment, educational opportunities, employment opportunities, healthcare access, and overall social acceptance and support for people with disabilities.

DRM has made significant advancements in raising awareness, changing societal attitudes, and implementing legal protections for people with disabilities. However, there are still ongoing challenges and areas for improvement to ensure full inclusion and equal opportunities across all aspects of life.

Disabled People are not ADA People.

lavantconsulting

: 

 People with disabilities are not “Americans with Disabilities Act people” or “Americans with Disabilities Act Guests.” The ADA is a law that increases equity for disabled people, not a label of any individuals. Referring to people with disabilities in this way is disrespectful and never appropriate.

Collaboration-Cooperation

My hero, Judy Heumann turns 75 on Dec 18th. Happy Birthday Judy!!

Back in 2019 I had the opportunity to interview the legendary disability civil rights activist, Judy Heumann, for UC Berkeley's "The Daily Californian". 

What an amazing conversation it was too. I prepared for the interview by reading up everything on her online, including the 466 pages of oral interviews archives of the Disability Rights Movement in UC Berkeley's Bancroft Library. 

Of course with any newspaper article, there is a word limit, so any writeup goes through multiple rounds of edits and reorganization of material and focusing on just a few things, so a lot of the conversation ends up getting left out. But Judy had so much advise for us disabled folks. So here is my longer early uncut/unedited draft of our conversation (with a lot of her original quotes) so we can continue to learn from her.

=========

Collaboration-Cooperation: A conversation with Judy Heumann

When I entered UC Berkeley as one of the first two non speaking autistics, I knew that Berkeley had been a key city in the Disability Rights Movement (DRM), though I was a little fuzzy about the details. Growing up, you are only exposed to a little slice of your world of disability and the issues surrounding your specific disability. I had of course heard of the Individuals with Disabilities Education Act (IDEA), as it had dominated much of my school years. Though at times flawed in its implementation, IDEA was this wonderful law that gave children with disabilities like me the legal right to a free and appropriate education in the public school system in the least restrictive environment. Prior to its 1975 precursor, The Education for All Handicapped Children Act, children like me were denied the right to schooling. But I did not know a lot more, for I do not remember disability history being highlighted in any of my high school history textbooks. 

It was my Disability Studies classes here on campus that opened my eyes to the rich history of the efforts made to ensure civil rights for this often marginalized and overlooked minority. Over the summer, I also had the opportunity to attend the Autistic Self Advocacy Network’s (ASAN) campus inclusion leadership program to learn more about autistic identity and disability justice. It led me to wonder -  if I as a disabled person knew so little, how then could others without a disability know about the issues surrounding disability and become our allies in the struggle for our civil rights.

It was therefore a privilege to interview UC Berkeley alumna Judy Heumann, a lifelong civil rights advocate for people with disabilities and a leader in the DRM. It was a pleasure discussing these issues with her as it not only improved my own knowledge but also make me think and kept me on my toes, as she would at times turn the questions back on me, and ask me for my thoughts.

Any introduction to Huemann cannot do justice to her accomplishments. An incomplete list follows. Heumann became a wheelchair user due to childhood polio, and has challenged the system at every turn from a young age. She had been denied access to her school as she was considered a fire hazard. She sued and won the right to a teaching license from the New York Board of Education. She was involved in the United Nations Convention of the Rights of People with Disabilities and in the passing of important disability legislations in the US like IDEA, Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. She has worked in key roles for the Clinton and Obama administrations, the World Bank and is a senior fellow at the Ford Foundation. 

 Closer to home, she helped set up the first Center for Independent Living (CIL), here in Berkeley and served as its Deputy Director from 1975-82. She co-founded the World Institute of Disability (WID) in 1983 in Oakland with a focus on policy issues. 

Most famously Heumann led 150 people with disabilities in the “504 sit-in”, the longest sit-in in US history, lasting 28 days, at the San Francisco federal building housing the Department of Health, Education and Welfare (HEW), memorialized in Drunk History. The list just goes on.

We started the conversation on when disability rights “solidified” into an actual movement. According to Heumann, the movement had started in the late 1940s itself but just became more prominent after World War II. But in terms of impact, given the CDC numbers of 56 million people with disabilities and 1 billion worldwide, Heumann feels the movement has far from solidified, is still emerging and very much in a developmental period.

Heumann confirmed what I’d heard mentioned or implied in my Disability Studies classes on campus that Berkeley’s DRM history tended to be chauvinistic. “Many women in the movement are not getting the credit they should,” both in Berkeley and nationally, said Heumann. She attributed it in part to the way the women’s movement itself had been evolving, with the women’s movement itself not appropriately represented by women with disabilities. But she felt the situation has changed in the last 30-40 years with disabled women taking on more positions of prominence. 

She drew attention to some women with disabilities in leadership positions that came to her mind at both national and international levels. At the national level were the late Martha Bristo , Rebecca Cokley, Maria Town, Katherine Perez, Sandy Ho, Haben Girma, and Julia Bascom. At the International level were Rosangela Berman Bieler, Ola Abu Alghaib, and Yetnebersh Nigussie. She was quick to point out that her list was both small and incomplete as there were so many people at this point.

We then discussed what had changed between the DRM in its earlier days and now. She pointed out though the DRM had been around for fifty to sixty years, initially cross-disability groups worked separately. She attributed one of the big changes to the “recognition we needed to be able to come together [cross-disability] on important pieces of legislation started in the late sixties, seventies and resulted in many things including our ability to get the ADA passed,” It was the realization that they were not going to get the support of elected bodies like state legislature and the congress unless they came together. A larger group also meant more sophistication and the ability to have a wider agenda like the “inclusion of disability related issues outside of the disability community,” said Heumann. 

“Recognition we needed to be able to come together [cross-disability] on important pieces of legislation ... resulted in many things including our ability to get the ADA passed." 

She also drew attention to my being able to work for the Daily Californian as an excellent example of laws like IDEA and ADA at work. She pointed out that before 1975 at least 1 million disabled children were not allowed in schools. “A very important part of what is slowly happening in the US is students, including students with more significant disabilities are going to school and like you have gotten into Berkeley, a highly prestigious school and I presume you are getting accommodations at school and you are obviously feeling more a part of the school because you are going out for things like writing for the newspaper. So I think that’s slowly what’s changing,” said Heumann.

“A very important part of what is slowly happening in the US is students, including students with more significant disabilities are going to school and like you have gotten into Berkeley, a highly prestigious school ... you are obviously feeling more a part of the school because you are going out for things like writing for the newspaper.”

The other positive thing she highlighted is that a growing number of disabled people are feeling proud of who they were and not hiding their disability and attributed this to the growth of the independent living movement. She added that parents of children with disabilities are also organizing more.

The conversation then turned to the current pressing issues in the DRM. Heumann could not overstress discrimination, which can come through lack of awareness, the ramification being “denying us opportunities.” One barrier is that many who are disabled are not identifying as disabled, so part of the challenge was to help people become stronger and see that discrimination was wrong regardless of who it was impacting in the disabled community. 

“I think when we feel we are being discriminated against, we need to talk about it as such,” said Heumann. People also needed to feel like they are a part of their own community and not stigmatized for being disabled in that community.

“I think when we feel we are being discriminated against, we need to talk about it as such,”

Cross-disability was another issue according to Heumann. The DRM needed to help people across various forms of disabilities to feel they are part of a single movement so that we can better articulate legislative measures needs for the entire community as in the case of employment. 

"Employers need to look at disability like they are looking at other diversity communities"

Heumann would like to see more legislative policy changes so that “employers are looking at disability like they are looking at other diversity communities.” She did not want to hear continual stories of people like her friend, turn down good jobs that they are well qualified for, due to a fear of losing state health benefits and personal attendant services. Heumann underlined that the area of employment needed to be looked at very closely. There is currently a huge disincentive for people with more significant disabilities on Medi-Cal and Social Security benefits from being productively employed.

There is currently a huge disincentive for people with more significant disabilities on Medi-Cal and Social Security benefits from being productively employed.

Heumann felt that much more attention should be paid to poor families who are not able to devote the time and attention needed to obtain services for their children. As a result, those children are being adversely affected and not getting the appropriate services under IDEA.

From the viewpoint of an outsider, Heumann felt a critical issue in the autism arena is to help ensure that people with communication disabilities (whether it is autism or other disability like deafness) get mechanisms and technology in a timely manner with the presumption of competence. “Whatever the cause of the different types of communication, we need to be working with children really really early on and trying different mechanisms that can work,” said Heumann. She pointed to the new non-profit Communication First, of which she is a director, working to advance the civil rights for people with communication disabilities.

“Whatever the cause of the different types of communication, we need to be working with children really really early on and trying different mechanisms that can work,”

In order for “vulnerable populations” to move up to education and employment, Heumann underscored how we need to be working more comprehensively with these populations. This was a concept that was stressed during my week with the ASAN program - that we can help the whole community by supporting the needs of the most vulnerable group amongst us.

Heumann also thought the message being given to families of children with autism at the time of a child’s diagnosis depends on “people’s perceptions of what we are or are not able to do.” So she encourages families to interact more with organizations like ASAN and spend more time with adult autistics so that families have a better understanding of the richness of the community. Autistics need to spend time with other autistics and have available a variety of mentorship programs (ASAN program being an example), but on a regular basis, to get a positive understanding of what is possible.

Heumann laughingly credited her Brooklyn origins to her personal qualities quoting the saying, ”New York City - if you can make it here, you can make it anywhere.” On a more serious note she pointed to fortitude as a personal strength as, “at some point I really had to make a decision as to whether or not I was going to allow discrimination to adversely affect me without fighting for change.“ She added that networking is also important to her as she likes to work with other people and stressed that for networking “it’s important to also have friends from diverse communities.”

“At some point I really had to make a decision as to whether or not I was going to allow discrimination to adversely affect me without fighting for change.“

What Heumann would like to be remembered for is her belief that “we need to be fighting for an end to discrimination for all people [and for] collaboration cooperation.” She explained that change itself may take time, but in the meantime we cannot accept no, and need to be pushing as hard as possible when fighting for our rights. She would also like to be remembered for talking to college students like me and others - a reason she does interviews like the current one is because she enjoys the two way interactive flow where, “you’re getting information from me and I’m getting it from you.”

Change itself may take time, but in the meantime we cannot accept no... We need to be fighting for an end to discrimination for all people and for collaboration- cooperation.”

Even as she continues to work in other areas, Huemann recently investigated the representation (or lack thereof) of disability in the media culminating in a detailed report. Essentially, she found that disability is being left out of the conversation even as the changing face of media now is all about diversity. She pointed out that we are learning so much more about people of color, sexual orientation and religious issues through the media, but “still only learning a little bit about us, that’s because disabled people are not playing prominent enough roles...The absence of disability in the media continues to result in stigma and discrimination.” In addition there has to be authentic representation, that it, disabled characters have to be played by actors with disabilities and not by non-disabled actors. Equally important is the fact that people with disabilities are adversely affected if they don’t see themselves represented in TV, movies and documentaries. Heumann discusses these issues and more in her new memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.”

The conversation then turned closer to home, to her time in Berkeley and the Bay Area. Heumann had needed to do a masters after suing the New York Board of Education for a teaching license and had been accepted into Columbia. Heumann stated that she may not have joined UC Berkeley if Ed Roberts had not reached out initially and sparked her interest. They had not known each other before then. Roberts had been calling to identify emerging leaders and asked if she would be interested in two campus departments - Public Health and City & Regional Planning - that were then recruiting students with disabilities. With the help of the late Prof. Henrick Blum, who later became her faculty advisor, she joined the School of Public Health in 1975.

In the Bancroft Library’s Disability Rights and Independent Movement Oral History Project archives, containing 466 pages of interviews with Heumann- she had stated that “For some reason, in graduate school I didn't feel the same kind of fear around tests.” As a Berkeley student I just had to ask if that was due to being in 'Berkeley.' Heumann laughingly agreed that part of it had to do with being in Berkeley because “it was really very exciting to be able to be around so many disabled people that were fighting for the same thing, you know fighting to strengthen our movement and to remove barriers and it was also easier to socialize because you know Berkeley is much smaller so one could get around this city much easier.” She added that academically, graduate school was also more essays, class participation, discussions and smaller classes focused more narrowly on a field of study which made it easier.

Heumann felt that as more colleges are in compliance with Section 504 and becoming more accessible, life is becoming better for students with disabilities on campuses. This is in sharp contrast to the time when she had her School of Public Health classes in the old Warren Building way off Shattuck Ave. Since that building had inaccessible bathrooms, she would have to come all the way to the Disabled Students Program (DSP) on Bancroft Ave to get somebody to help her go to the bathroom. Then she would have to travel all the way back to Warren to get to class.

Heumann then spoke of her years in Berkeley with the CIL and the WID. Highlights for her was how they were learning to work together with other political organizations and different groups all fighting for equality. She stressed that they were doing work cross-age (from children through seniors), cross-race and cross-disability with organizations like the Asian Health Clinics to what used to be called the Over-Sixties Clinic (Collaboration-Cooperation). She also liked how the CIL was growing with a staff reaching 200 at one point.

This was also the time when they were “learning how to network effectively, establishing goals and timelines about when we want certain things to happen and living up to them,” said Heumann, which proved useful at the time of the 504 sit-ins. Heumann pointed out that much of what she had been saying during the course of this interview was an important part of what happened with 504.

The Rehabilitation Act had been passed in 1973 itself, with Section 504 of the law finally giving voice to the issue of discrimination by stating that any program that received federal funds could not discriminate against anyone with disabilities. Section 504 is widely regarded as the first disability civil rights law in the United States. However. Secretary Joseph Califano was not signing off on the 504 regulations. A law without regulations to enforce its implementation essentially has no teeth. Heumann pointed to the cross-disability organization American Coalition of Citizens with Disabilities (ACCD), of which she was a member, leading the effort to get the regulations out of the Department of Health, Education and Welfare (HEW). The disability community had been growing increasingly unhappy with the stalling. ACCD finally issued a deadline ultimatum and followed through with demonstrations and sit-ins at eight HEW regional headquarters all over the country. The 28 day long San Francisco federal building sit-in at by 150 people with disabilities was crucial in swinging the momentum towards signing of the regulations by Califano.

Heumann felt a reason the Bay Area 504 sit-in was so successful was because the CILs played an important role and California had way more CILs before any other state. By 1976, California had eight CILs versus one in Michigan and one in Massachusetts. As a result, “we were able to organize, we were able to work with labor unions we had good relationships with the media and I think all those things resulted in our ability to be successful with the 504 regulations,“ said Heumann.

She would like to remind disabled students and their allies to go online and look at the Power of 504, a video produced by the Defense Rights Education and Defense Fund (DREDF), Drunk History and her Ted Talk to learn more about 504. For Heumann, the 504 demonstrations underscore the importance of collaboration as they were supported not just by the disability community but by other groups like unions, church groups, farm workers, etc. The 504 regulations helped set the stage for the passage of the Americans with Disabilities Act.

I also asked Heumann what advice she would give for the younger generation?

How do they go about “articulating” needs and see opportunities, as civil rights seems such a huge term and a bit overwhelming? 

How could young people get involved to shape the movement? 

How could they build allies amongst the non-disabled population? 

And did she have any advice for both the disabled community and their non-disabled allies?

Heumann started off by telling students that working inter-generationally and cross-disability, “will strengthen our engagement [as] we have different levels of knowledge and expertise.” Its the power of collaboration-cooperation. She also pointed out that a major weakness of the disability movement is that it is not documented enough. Knowing “where we’ve been and where we are [helps us with] where we want to go.” So she advises students to know your history, for knowledge made you better equipped to play a meaningful role. Then, when you come across an opportunity or barrier that affects the community, you will know if its a tech issue or something else. The “where we want to go” part is also an important part of the intergenerational and cross-disability discussion.

Knowing “where we’ve been and where we are [helps us with] where we want to go.” 

She underlined that we also should understand the needs of others so that we can speak on each others behalf and call on each other for support. So communication was very important for Heumann who advised seeking out others on college campuses and high schools. She would like to see disability brought into the curricula, not just as a subject of disability studies, but integrated into academic work across the board.

“I know a disability cultural center is going to be happening” on campus, stated Heumann [note: UC Berkeley did get a Disability Cultural Center in 2021]. She added that disabled students should not just limit themselves to disability organizations but also consider joining or working with other cultural centers so that you can learn from each other. “Do not be fearful of speaking up and looking at creating change” said Heumann.

For students in other countries, Heumann advised looking up the growing number of disability organizations in those countries and seeing if you want to work with them. She also added that students should get involved in issues that the previous generation did not have to contend with like the impact of the environment and climate change. 

“Use social media more, reach out, speak to more groups and continue to work collaboratively and invite people in to speak so that we can be learning and talking together” said Heumann.

“Use social media more, reach out, speak to more groups and continue to work collaboratively and invite people in to speak so that we can be learning and talking together”

 

@harisri108 #Redefine_the_Table #autism #belonging

Disability Pride: Dispatches from a Post-ADA World

Media mention in this book. 

Disability Pride: Dispatches from a Post-ADA World

By Ben Mattlin · 2022

 

ADA 32 at the White House

Me shaking hands with the President

It's an honor to get invited to the White House and get to shake hands with the President of the United States, more so for 32nd anniversary of the Americans with Disabilities Act.

I am of the post-ADA generation, born after ADA was passed in 1990. Undoubtedly, it is laws like ADA that the allow the doors of opportunity to open to the possibility of me, and in President's Biden's words, "to work, to study, to make connections."  

It is a reason I can, with some measure of confidence, say - So what if I am significantly disabled, I too can pursue a PhD. I too can aspire to higher education, to employment (that's next), to inclusion, and aspire to go toe to toe with my non disabled peers. Perchance, I too can change the world. 

It is because of laws like ADA that Lady Liberty turns her torch towards folks like me, so we too get the opportunity to pursue our version of the American Dream.

I am extremely grateful and in deep admiration of all stalwarts who laid groundwork that folks in my generation and beyond can now build on. In her speech, First Lady, Dr Jill Biden, spoke of 8 year old Jennifer Keelan who cast aside her wheelchair and crawled up the steps of the Capitol Hill in March 1990; "acts of protest," (widely televised) which spurred the signing of the law in July 1990. The then Senator Joe Biden has been a co-sponsor of the bill, sponsored by Sen Harkin and signed into law by President George HW Bush.

Thank you, thank you, to all those tireless stalwarts, (including living legends like my hero, Judy Heumann), in Dr Biden's words, for "refusing to be silent about indignities... faced" and for "holding on to the hope of a better way."

Thank you Mr President for acknowledging this momentous occasion for all of us disabled folks and being part if its journey right from inception. 

In his speech at the Rose Garden of the White House, President Biden referred to the ADA as "one of the most important civil rights laws ever," as he recalled the words of Justin Dart Jr. (regarded as the godfather of ADA) - "ADA is only the beginning, its not the solution, Its the center foundation on which solutions will be constructed." 

Indeed, ADA is a starting point that was crafted 32 years ago and it is up to our generation to continually shape it to meet the changing needs of today and tomorrow. 

I feel, the fact of ADA being a work in progress needs to be highlighted, as it seems especially relevant to the wide diversity in autism, which means building in flexibility and open-mindedness, as there is not going to be a clear one-solution-fits-all. 

“For our country, the ADA is a testament to the character of our people, to the country... It’s proof we can work together and keep moving closer to realizing the promise of America for all Americans,” Biden said.

(President's full remarks, fact sheet)  

We have to continue to look for solutions and workarounds on many many fronts; this is a humankind issue. There is a reason for the word "kind" in the word humankind; "kind-ness" is a fundamental but oft forgotten character trait of people, that has carried us through the troubling periods of human history from time immemorial. 

I want to believe Charles Darwin’s take on the human species as one of “survival of the kindest,” and not just “survival of the fittest.” I want to believe our human society has great capacity for goodness and compassion for all its members.

My generation has to carry this torch forward and demand not just a seat at the table of solutions, but perhaps redefine the table itself, and not just in this country but worldwide for humankind. 

Blind jazz pianist, Jose Andre Montano, prior to his mesmerizing performance that day, gave some very good and practical advice which was very relevant to our mental health - "life is more wonderful if you love your differences and you love who you are... [otherwise] life would not make sense." We often forget the toll of mental health that accompanies the fact of disability as we are constantly in this race to catch up or meet the ever moving target of what society considers acceptable.

On a personal note, too thrilling to get invited to the White House and get to shake hands with the President. The White House is truly magnificent both inside and out. And to be where such laws were signed.... In total awe.

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....)

 

What students say on intersections of autism.

Sharing some some student midterm papers on different intersections  from my  1:54 Autism Spectrum Class this semester on this topic.

My first book reading

 my first book reading (via zoom) at the Oakland Asian Cultural Center, on 7/22

The last time I was published by Scholastic in an anthology, there were readings in Battery Park,NY and I never went as I thought I would not be able to participate, much to my regret now.

So this was my very first attempt using text to speech to read out the excerpts.. yeah.

Thursday 7/22, Essential Truths has their virtual Oakland Book Launch, hosted by Oakland Asian Cultural Center, from 7:00 p.m.-9:00 p.m. PST!!!!

Chat Comments

19:03:05 From Rachall Lee, she/her (OACC) to Everyone: Today’s Program: 1) Opening & Land Acknowledgement 2) Guest Presentations 3) Open Discussion/Q&A 4) Closing 19:03:55 From Rachall Lee, she/her (OACC) to Everyone: Native Land website: https://native-land.ca/ 19:37:26 From danny ryu (they/them) to Everyone: Go hari!! 19:37:30 From Tria (she/her) to Everyone: So wonderful, Elmaz! And yay Hari!! 19:37:47 From Rachall Lee, she/her (OACC) to Everyone: Hari Srinivasan is currently a student at UC Berkeley and a student journalist at the Daily Californian. Hari is a prolific writer, having won many awards for his writing and poetry. He is also a minimally speaking autistic and passionate about disability justice. His advocacy was mentioned on President Obama’s Instagram campaign on the 30th anniversary of ADA 19:37:56 From Kelechi Ubozoh (she/her) to Everyone: I mourn the loss of the human body 19:38:05 From Diann Leo-Omine (she/her) to Everyone: Zoom the new reality 19:38:13 From danny ryu (they/them) to Everyone: A microscopic virus brought the world to its knees 19:38:32 From Sridevi to Everyone: the irony! 19:38:40 From Diann Leo-Omine (she/her) to Everyone: So true, Hari! 19:38:50 From Elmaz Abinader, She/hers to Everyone: Truth to power 19:38:54 From Lenore Naxon to Everyone: Indeed. 19:38:58 From Akemi Chan-Imai, she/her (OACC) to Everyone: <3 <3 19:39:12 From Kelechi Ubozoh (she/her) to Everyone: when the able bodied demanded it the impossible became possible overnight 19:39:20 From katie aliféris to Everyone: TRUTHS!!! 19:39:21 From Sandra Bass to Everyone: Cal in the house! 19:39:21 From Akemi Chan-Imai, she/her (OACC) to Everyone: yes!! 19:39:34 From Vanessa Cabrera to Everyone: when I was there I wasn’t 19:39:45 From Diann Leo-Omine (she/her) to Everyone: Somehow I was on equal footing 19:39:53 From Faria to Everyone: Zoom as an equalizer 19:39:58 From danny ryu (they/them) to Everyone: I became part of the conversation 19:40:07 From Sandra Bass to Everyone: A part of the conversation rather than an observer of conversations. 19:40:10 From Lenore Naxon to Everyone: He's opened my eyes. 19:40:12 From Christl Perkins to Everyone: became part of the conversation, more than an observer of conversations 19:40:17 From Shirley Huey (she/her) to Everyone: ^^^ 19:40:39 From Christl Perkins to Everyone: definitely a lot of intersectionalities 19:40:44 From danny ryu (they/them) to Everyone: yes. 19:40:45 From Shirley Huey (she/her) to Everyone: yes 19:41:00 From Yeva Johnson to Everyone: Hari, thank you for these lessons on intersectionality! 19:41:03 From Lorraine Bonner to Everyone: Elijah McClain 19:41:16 From katie aliféris to Everyone: yes!!! 19:41:20 From Sandra Bass to Everyone: survival of the kindest! 19:41:21 From Faria to Everyone: Survival of the kindest <3 19:41:21 From Tria (she/her) to Everyone: Yes, Hari! All these truths. 19:41:21 From Akemi Chan-Imai, she/her (OACC) to Everyone: survival of the kindest 19:41:24 From Kelechi Ubozoh (she/her) to Everyone: <3 19:41:24 From danny ryu (they/them) to Everyone: Survival of the KINDEST!! 19:41:28 From Yeva Johnson to Everyone: Survival of the kindest, never heard of that until today! Thank you!!! 19:41:28 From katie aliféris to Everyone: ^^^ 19:41:30 From Yeva Johnson to Everyone: ❤️❤️❤️ 19:41:30 From Shirley Huey (she/her) to Everyone: yes 19:41:37 From Tureeda Mikell to Everyone: Great information, Hari! 19:41:43 From Sridevi to Everyone: Sadly, it's true! worse for those with more intersections 19:41:53 From Sandra Bass to Everyone: Project our goodness into the world through ACTION! 19:41:54 From Tria (she/her) to Everyone: Thank you for this daily nudge <3 <3 19:41:55 From Vanessa Cabrera to Everyone: thank you!!!! 19:41:56 From Elmaz Abinader, She/hers to Everyone: yay 19:41:56 From Sandra Bass to Everyone: Thank you Hari! 19:41:56 From Faria to Everyone: Hari!! Thank you! 19:41:57 From Yeva Johnson to Everyone: Thank you, Hari!!!❤️❤️❤️❤️ 19:41:58 From danny ryu (they/them) to Everyone: Wowwwwww thank you hari 19:42:02 From Kelechi Ubozoh (she/her) to Everyone: HARI SO MOVING! 19:42:02 From Sandra Wassilie to Everyone: Beautiful message, Hari: survival of the kindest. 19:42:05 From Susana Praver-Perez to Everyone: Thank YOU Hari!!! 19:42:07 From Sridevi to Everyone: daily nudge for long term! 19:42:08 From Tureeda Mikell to Everyone: Yes all that’s Good within ourselves! Thank You!!! 19:42:12 From Christl Perkins to Everyone: Wisdom - thank you Hari! 19:42:14 From Nancy Hom to Everyone: Let us reach down into that goodness! 19:42:18 From Shirley Huey (she/her) to Everyone: Thank you Hari! 19:42:27 From Johnny Huy Nguyen to Everyone: Thank you for the real talk and the hopefulness 19:42:31 From Pardis Esmaeili to Everyone: So insightful 19:42:49 From maestro mathmattox to Everyone: 10Q so much hari!

A Day in the Life

This was an interview I gave for Zoom magazine. 

Interview Text follows. 

A Day in the Life of Hari Srinivasan, Promoter of Connection,Understanding, and Belonging


Hari Srinivasan is a minimally-speaking autistic advocate and college student at UC Berkeley, California. He works tirelessly as a student, research assistant, and teacher. He is a Psychology major with a minor in Disability Studies, and so far has a 4.0 GPA and is Phi Beta Kappa. At UC Berkeley, he teaches a class about autism, and this summer he will be starting an independent year-long research project on autism as a
Haas Scholar. Hari has a passion for learning about a variety of disabilities, as he feels it helps him understand autism better and gives him a broader perspective on the challenges that many people face.

Hari has been featured on President Obama’s Instagram to help celebrate the 30th anniversary of the ADA (Americans with Disabilities Act) and is a student journalist at the Daily Californian. He’s active on his college campus, even serving as the first nonspeaking autistic president of the student organization Spectrum At Cal, working to expand their outreach efforts and promoting “belonging” over mere “inclusion.” He also serves on the board of ASAN (Autistic Self-Advocacy Network), one of the few
organizations supported by the autistic community, and is a member of the Panel of People on the Spectrum of Autism Advisors (PSA) for the Autism Society of America.

1. What does a typical school/regular day look like for you (or, if there isn't a typical day, describe one that is representative of your life)?

A typical day during the pandemic is a lot of screen time, typing or in Zoom, interspersed with maybe a walk, some exercise, music, TV (more screen time), and staring at the view of the beautiful Bay and the Golden Gate bridge from my window.

2. What hobbies or interests do you have outside of your schooling or work?

Philosophy & creative writing, especially poetry. I have written over 200 poems. Yoga, music, watching football, basketball, cricket, &amp; tennis (I’m learning tennis).

3. How does being autistic help or hinder your work, schooling, or hobbies?

A multi-modal thinking which uses all my senses, not just traditional audio-visual, can be a huge advantage as you are weaving in many streams of thought and consciousness.

The mind is a beauty with its ability to quickly grasp concepts, analyze, appreciate, and enjoy. It's a tremendous advantage to have this mind as I have to spend a majority of the time on the motor output part. For instance, in Calculus the instructor was writing out all the steps on the board. Even as he started, I had the answer, though if someone had asked me to type out all the steps, that would have taken me quite a long time as that is a motor task. I often feel I am on two complete opposite tracks with my mind and body.

If I have to do a motor task, I can get completely lost and disoriented and distracted even between point A and B. Honestly, that part is tremendously frustrating and drags me down and leads to all kinds of anxiety and more “autism behaviors” which further slows me down.

4. What kinds of changes or accommodations do you make in your life to allow
you to be successful?

I think I am still trying to figure this part out (LOL) as my needs go beyond just the communication part, which is hard in itself. I’m constantly having to look for workarounds for each and everything. It's the ADHD, oral-motor apraxia, anxiety, lack of body schema, sensory processing, fine motor issues, body coordination issues, obsessive compulsive behaviors, mood regulation, misc. health issues, allergies, etc.,
all in one package called Hari. There is only so much that goes into the disability accommodations which are very academic oriented. So each day is like a new negotiation with my environment which has been quite the task and frankly quite exhausting. Much of the time, I’m not really feeling all that successful and quite burned out as I am trying to navigate through my maze of a day, day after day.

5. Have you experienced discrimination or bullying because of your autism or autistic traits?

Oh yes, all the time. My disability and “autism behaviors” are all too obvious, much of it quite involuntary, though there are still attempts at masking and camouflaging in other areas. So I can get either completely ignored and excluded or stared at with uneasy or disapproving looks in many places. And that is just the tip of the iceberg. Many, many instances by educators, neighbors, programs, professionals, and just folk on the street.


6. What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?

No one is an expert on you. No one knows enough about autism to be an expert. Even
the “experts” are still learning. So no one gets to have final say on what your limitations,
capabilities, &amp; needs are.

7. What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called "experts" do you think parents should ignore? How can parents best support their non-speaking or minimally-speaking children?

Communication must extend beyond just basic wants. Basic wants are just survival. The next step up are needs around school/vocational/skills/interests which are necessary for building self-confidence and getting ahead. But real quality of life is the ability to express thoughts and opinions. So aim for that in communication—irrespective of the communication methodology used and whether it’s via speaking or via AAC. On the “experts” part, I would repeat the advice to autistics above.

8. What was one piece of advice you received that helped you be comfortable with who you are?
“The human race is so puny compared to the universe that being disabled is not of much cosmic significance.” —Stephen Hawking

9. How did growing up without feeling represented in media affect you?
OMG. That was the essence of my recent article titled “Boy Like Me” for the Disability Visibility Project.

10. How does being a minimally-speaking autistic person affect your experience in higher education and in your advocacy work?

College has been an amazing experience for me as I have found a very supportive environment and faculty in Berkeley. I don’t know if this is the case in other places though. But for all that I get to do, I realize my college experience will still be just a fraction of that of my NT [neurotypical] peers or even my speaking autistic peers.


11. What kinds of topics do you cover in the college course on autism that you teach?

So it's a combination of lectures, class discussion, student presentations, and guest speakers and panels. I manage to pack in a lot in our weekly 2-hour classes—from history, education, therapies, issues across lifespan (childhood - adulthood - geriatric), autism terminology, disability law, housing, relationships, family dynamics, identity, healthcare, mental health, translational research, law enforcement, tech, representation in media, and a bunch more. The 12-13 weeks of classes each semester are not enough to pack in all the additional topics I would like to cover. It felt so impactful when a former student from Europe recently emailed me to say that takeaways from this class led to her current research work.

12. As one of the board members, in what ways do you contribute to ASAN?

I think I both learn and bring fresh perspectives as a both a minimally-speaking autistic
and a person of color.

13. What are some aspects of advocacy work that you find especially fulfilling?

It is the opportunity, that dream, to make a contribution, even if it's a pebble, that will lend to that huge ripple of change.

On a lighter note, I used to obsessively watch Thomas the Tank Engine as a kid. And Thomas always wanted to be a “useful” engine. I guess I’m being “useful” too, now.
LOL.

14. What would you like to do—given your education, work, and advocacy background—after graduation?

In the immediate future I hope grad school is in the cards for me. I’m passionate about learning and knowledge, and my mind is just thinking all the time and I want to do and contribute so much.

15. How can readers learn more about the experiences of non-speaking or
minimally-speaking autistic people? 

Are there resources you'd like to point people to, or people online that you recommend following?

Just reading or following what a few of us are writing is not enough. Thought has to translate into action on the ground. Start by interacting with nonspeakers. There will be many in your neighborhood who are getting absolutely ignored or out of sight, tucked away in special education class or day programs. How will you learn unless you interact and start to include? Ask to start buddy programs at school if you are of school age. If a nonspeaker lives on your street, include them in your circle of friends and do things with
them. There are many small things you can do at the grassroots level which together will make a huge difference and normalize the presence of every kind of human being in everyday society.

16. Is there anything else you'd like to share?

While it's nice to see neurodiversity make inroads both in terms of awareness and on the DEI [Diversity, Equity, and Inclusion] front, there needs to be a bigger effort to include the more marginalized groups like minimal/nonspeakers, and their support needs in such measures and conversations.

17. What are the best ways for people to connect with you (if desired—anything you include in this section will be published, so only include information you want public)?  (Email, Twitter, Facebook, Instagram, etc.)

I have a bunch of media for interested folks. I write about many things.

Daily Californian: www.dailycal.org/author/haris/
Twitter/Instagram @harisri108
Facebook Page: 108hari
YouTube: tinyurl.com/108hari
Blog: http://uniquelyhari.blogspot.com
But more than FOLLOW, I want you to think ACTION.

This was part of the series.