HHS Announcement of IACC Member Appointment

https://iacc.hhs.gov/news/2021/iacc-new-members.shtmlContact: Office of Autism Research Coordination/NIH
Email: IACCPublicInquiries@mail.nih.gov

HHS Announces Appointment of New Members to the Interagency Autism Coordinating Committee

Wednesday, July 7, 2021

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019. The IACC is a federal advisory committee composed of public stakeholders and federal officials that coordinates federal activities concerning autism spectrum disorder and provides advice to the HHS Secretary on issues related to autism. Committee meetings serve as a public forum for the sharing of community perspectives and concerns about autism. The committee uses this input as it formulates advice and recommendations for the HHS Secretary on matters related to autism research, services, and policy. The committee's responsibilities include developing and annually updating the IACC Strategic Plan for Autism Spectrum Disorder (ASD) and preparing an annual Summary of Advances in ASD Research.

After an open call to the public for nominations of individuals to serve on the committee, Secretary of Health and Human Services, Xavier Becerra, J.D., appointed 20 new and two returning public members to the IACC to provide him with advice to advance research, enhance services, and increase opportunities for people on the autism spectrum. The committee also includes 23 new and returning federal officials representing key federal agencies and departments that serve the autism community across a wide variety of areas, including biomedical research, healthcare, education, and social services. Joshua Gordon, M.D., Ph.D., director of the National Institute of Mental Health, will continue to serve as the chair of the committee. The first meeting of the new committee will take place virtually on July 21-22, 2021 and will be open to the public via webcast. A full roster and biosketches of all the new and returning members can be viewed on the IACC website.

IACC Executive Secretary, Susan Daniels, Ph.D., stated, "We are excited to welcome the largest and most diverse IACC to date, with a wider representation of perspectives from across the autism community than ever before."

Public members appointed include autism self-advocates, parents and family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of autism research, services, and advocacy organizations. Many of the appointed individuals serve multiple roles, such as parent and researcher or self-advocate and leader of an advocacy organization. Appointees hail from across the U.S., including states that have not been represented on the committee previously, such as Louisiana, Maine, Texas, Washington, Vermont, and Wisconsin.

Autism and disability organizations represented by new and returning appointees to the IACC include the Autism Science Foundation, Autistic Self Advocacy Network, Autism Speaks, Champions Foundation, Simons Foundation, and Madison House Autism Foundation. Four federal departments newly joining the IACC —the U.S. Department of Housing and Urban Development, U.S. Department of Justice, U.S. Department of Labor, and U.S. Department of Veteran Affairs—will provide additional expertise in the critical areas of housing, employment, interactions with law enforcement, and care for veterans on the autism spectrum.

Public members appointed by the Secretary to serve on the IACC from 2021-2024 are:

• Maria Mercedes Avila, Ph.D., M.S.W., M.Ed.Associate ProfessorDepartment of PediatricsLarner College of MedicineUniversity of VermontBurlington, Vermont
• Alice Carter, Ph.D.ProfessorDepartment of PsychologyUniversity of Massachusetts Boston
• Samantha Crane, J.D.Legal DirectorAutistic Self Advocacy NetworkWashington, D.C.
• Aisha Dickerson, Ph.D.Assistant ProfessorDepartment of EpidemiologyBloomberg School of Public HealthJohns Hopkins UniversityBaltimore, Maryland
• Dena Gassner, M.S.W.Ph.D. Candidate in Social WorkAdelphi UniversityWest Hempstead, New York
• Morénike Giwa Onaiwu, M.A.Humanities ScholarCenter for the Study of Women, Gender, and SexualityRice UniversityHouston, Texas
• Alycia Halladay, Ph.D.Chief Science OfficerAutism Science FoundationNew York, New York
• Craig Johnson, B.A.Founder and PresidentChampions FoundationHouston, Texas
• Yetta Myrick, B.A.Founder and PresidentDC Autism ParentsWashington, D.C.
• Lindsey Nebeker, B.A.Freelance Presenter/TrainerAlexandria, Virginia
• Valerie Paradiz, Ph.D.Vice PresidentServices and SupportsAutism SpeaksPrinceton, New Jersey
• Jenny Mai Phan, Ph.D.Post-Doctoral FellowWaisman CenterUniversity of Wisconsin-Madison
• Joseph Piven, M.D.Thomas E. Castelloe Distinguished Professor of Psychiatry and PediatricsUniversity of North Carolina-Chapel Hill
• JaLynn R. Prince, B.F.A.Co-Founder, President, and ChairMadison House Autism FoundationRockville, Maryland
• Susan Rivera, Ph.D.Professor and ChairDepartment of PsychologyUniversity of California, Davis
• Matthew Siegel, M.D.Vice President of Medical AffairsDevelopmental Disorders Service LineMaine Behavioral HealthcareWestbrook, Maine
• Ivanova Smith, B.A.Self-Advocate FacultyLeadership Education in Neurodevelopmental and Related DisabilitiesUniversity of WashingtonTacoma, Washington
• Hari SrinivasanStudentUniversity of California, Berkeley
• Helen Tager-Flusberg, Ph.D.ProfessorDepartment of Psychological and Brain SciencesBoston UniversityBoston, Massachusetts
• Julie Lounds Taylor, Ph.D.Associate ProfessorDepartment of PediatricsVanderbilt University Medical CenterNashville, Tennessee
• Paul Wang, M.D.Deputy DirectorClinical Research Associates, LLCSimons FoundationNew York, New York
• Stephen Whitlow, J.D.Executive DirectorTransition ServicesMerakeyBaton Rouge, Louisiana

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research, services, and policy. The IACC works to improve coordination and communication across the Federal government and works in partnership with the autism community. The documents and recommendations produced by the IACC reflect the views of a federal advisory committee, which is composed of federal officials and public stakeholders, but do not represent the views, official statements, policies or positions of the federal government. For more information on the IACC, please visit: iacc.hhs.gov.

 

Media Mention

https://autcom.org/assets/The-Communicator-Summer-2021-Issue-2.pdf

 

Essential Truths - The Bay Area in Color

My poetry-prose piece titled "Survival of the Kindest: Truths from a Zoom Reality" is part of this   anthology by BIPOC writers and artists from the SF Bay Area. 

Order the book at HERE

Amazon Review: Poetry, prose and artwork by 130 Black, Brown, Indigenous, and People of Color – from poets laureate and published authors to high-school students and closet writers, from teachers and healthcare providers to the formerly unhoused. Themes include: What has it been like living with loss and uncertainty? What has tested and inspired you as a person of color or ally? What gives you the strength to keep going? How are you working for positive, sustainable change? What are the challenges, lessons and rewards of becoming part of the solution?

https://www.amazon.com/Essential-Truths-Bay-Area-Color/dp/1733059024/ref=sr_1_1?dchild=1&keywords=essential+truths%3A+the+bay+area+in+color&qid=1623887550&sr=8-1

Some press-releases about the book

https://www.sfexaminer.com/entertainment/people-of-color-share-essential-truths/?fbclid=IwAR25w1_N8oQPV6EcjAHDCbthFR0p5oYB8zL1PJy_FP0ihkyo9b5DtSVRa5g 

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/