Embracing Kuleana - Our Collective Responsibility Towards Autism

Embracing Kuleana -  Our Collective Responsibility Towards Autism

(Jun 21, 2024 is Native Indigenous People's day)

In the Hawaiian language, the word "kuleana" embodies a profound concept, combining responsibility and privilege. "Kuleana finds you if you are open to it." (1). This notion can be extended to our approach toward autism, It is our kuleana—our responsibility and privilege—to ensure that the needs of all autistic individuals are met with empathy and understanding, including the needs of the most marginalized autistics.

This sense of kuleana aligns with the wisdom of the late legendary disability rights activist Judy Heumann, who reminded us that "disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life." 

Society has a crucial role in dismantling barriers and fostering a world where all individuals, regardless of their abilities, can live fulfilling lives. It means advocating for accessible education, healthcare and medical solutions, housing, care services, employment opportunities, and social inclusion. Embracing our kuleana towards the autism community is about more than just providing resources; it's about fostering an approach that looks at both strengths-based opportunities and challenges-based solutions.

By being open to kuleana, we create a more inclusive world.

- Hari S

(1) Aulani Wilhelm is the Chief Strategy and External Affairs Officer at Nia Tero, an organization dedicated to working in solidarity with Indigenous Peoples. The quote is taken from a May 30, 2024 webinar. Celebrating Conservation, Ocean Justice, and Climate Leadership in the Asian American, Native Hawaiian, and Pacific Islander Community.

Refocusing the Autism Conversation: Beyond Terminology

Refocusing the Autism Conversation: Beyond Terminology

In his insightful book The Brain Inside Out, György Buzsáki highlights a significant challenge in scientific discourse: the tendency to create new terminology in an attempt to explain complex phenomena. He shares his frustration, echoed by his mentors, that these "filler terms" often obscure the true nature of the mysteries they aim to unravel. This practice can mislead readers into believing that a mechanism has been identified, when in reality, it remains elusive.

This phenomenon is particularly relevant in the field of autism, where debates over terminology often overshadow the more pressing goal of finding solutions. The discussion around whether to use "person with autism" or "autistic person" is a prime example. While language is undoubtedly important, the energy spent on these debates could be better directed towards understanding and addressing the needs of autistic individuals.

The focus should shift towards practical outcomes and real-world solutions. Instead of getting caught up in linguistic nuances, we should prioritize research that improves the quality of life for autistic people. This includes exploring interventions that address sensory processing differences, finding biomedical solutions to pressing health concerns, developing educational strategies that support diverse learning styles, lowering cost of support care, and creating inclusive environments that accommodate a wide range of abilities.

Buzsáki’s critique of explanatory terms serves as a reminder to the autism community: let’s not lose sight of our primary objective. By moving beyond terminology debates and concentrating on tangible solutions, we can make meaningful progress in enhancing the lives of those on the autism spectrum.

Impact of language choices in scientific publication on representation of autistic researchers.

The impact manifests in several key ways.

1. Inclusivity and Accessibility. Language that is clear, direct, and jargon-free is more accessible to a wider audience. Which means a wider spectrum of autistics can engage more fully with scientific content, whether they are authors, reviewers, or readers.
2. Bias and stigma. 
3. Representation. Who is getting left out and who is getting included. 
4. Authorship and collaboration. Autistics may face barriers in scientific publishing due to implicit biases in what is considered rigorous or appropriate academic language. This can discourage participation or lead to under representation in authorship and peer review processes.
5. Ethical considerations. Engaging the autistic community ensures that scientific discourse does not inadvertently marginalize or misrepresent groups.
6. Policy and guidelines. Journals and publishers can influence language norms through their style guides and editorial policies. By adopting guidelines that favor inclusive and respectful language, publishers can lead the shift towards more equitable representation in scientific literature.

Words matter: Reframing neurodivergence in science, medicine and society

 https://www.elsevier.com/connect/words-matter-reframing-neurodivergence-in-science-medicine-and-society

How we write and think about neurodiversity can have a profound effect on people’s lives; watch the webinar hosted by Cell Press and The Lancet.

Reclaiming "Person with Autism"

I'm reclaiming the use of "person with autism" and am not offended by it. It is part of who I am. 

When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.

I am both 'autistic' and a 'person with autism'

IFL v PFL

Identify First Language (Autistic/ disabled) v Person-First Language (Person with Autism, Person with Disability) 

Seriously, with the amount of airtime spent on this topic,  one would think this is the only and primary issue facing autism. Can we move on already and just accept both. We have SO MANY CRITICAL ISSUE TO FOCUS ON and this is not one of them. 

Let me remind you, person-first-language was literally the language of the disability rights movement (DRM). Without that, none of us can even move about in society. All our legislation uses this language

• Americans with Disabilities Act
• Individuals with Disabilities Education Act
• United Nations Conference on Rights for Persons with Disabilities (UNCRPD)

These laws were meant to uplift us. So how can "person with autism" be degrading?

I was told that this was projects fragmentation, a separation of our autism from our human self. In fact if that is even possible, there are aspects of my 'undesirable parts of autism" that I would very much like to distance from, if that is even possible - like my behavioral challenges, mood swings, my OCD, my health issues. So that argument does not fly because I can't even separate those even if I want.  So why are we having these circular arguments. 

And if we think something is undesirable, instead of fighting it, let's take control of the narrative, let's own it, let's rebrand and repurpose it. When you reclaim language as a positive, it cannot be used against you. Others lose the power to use it as a negative against you.

The wheelchair user community have done this already - they have turned "cripple" into the very positive "crip" (Krip Hop, Crip Camp the Oscar nominated movie). That is such a BRILLIANT move and I am in deep admiration. I've heard one of my disabled professors, Dr Victor Pineda, being referred to as a "super-crip" by Stuart James (Exec Director of  Berkeley Center for Independent Living) and I thought that term was so super cool. 

Autism was a latecomer to the DRM and we adopted IFL later as well. 

If a person wants to use IFL, that's fine too.  

If a person want to continue using PFL that's fine too. 

I would say let's use and encourage both. 

Why is this important?

A few years back there was an NYT article that suggested re-introducing state run institutions. I think you will agree that institutions is "BAD" on so many levels -  negates the entire DRM efforts which fought to get people out of institutions. There was a twitter storm over the article. But the criticism was NOT about INSTITUTIONS, but rather over the fact of "person with autism" used in the article. 

How is "person with autism" more important than re-introduction of institutions? 

What is this obsession of the autism community with a narrow focus on this one little issue of person-first over everything else. Our priorities are SO MESSED UP. 

I understand that people can have preferences but seriously it does not merit the amount of discussion time it currently gets. 

LETS ENCOURAGE AND ACCEPT BOTH. Let's make both as positive for us, so we don't have to keep circling this one issue. 

Lets' move onto the real issues in autism please. 

I'm reclaiming the use of "person with autism" and am not offended by it. It is not diminishing who I am. I am both 'autistic' and a 'person with autism'

- by Hari who is both "Person with Autism" and "Autistic"

PS: Language usages

Brits say : I'm going to visit my friend"

Americans like to say: "I'm going to visit with my friend"

 

Did the additional "with" change the meaning. 

The Lancet and Cell Press Panel - Inclusive Langauge in Scientific Publishing

Recording:  https://www.youtube.com/watch?v=PuazLmv7hFo

Virtual forum presented by Cell Press and The Lancet.

Discussion exploring neurodiversity in science and the scientific community. Beginning with a short introduction to the concepts of neurodiversity and the social model of disability, speakers Mary Doherty (University College Dublin), Hari Srinivasan (Vanderbilt University), and Axelle Ahanhanzo (LAUDACE) will offer insights into making spaces safer for neurodivergent people, discuss intersectionality and neurodivergence, and unpack the importance of evolving scientific language to reflect lived experiences while ensuring rigorous scientific investigation. 

Moderated by Matthew Gilbert (The Lancet), Sri Narasimhan (Cell), and Amy Slogrove (The Lancet Child and Adolescent Health), this event will feature three short talks from our panelists, followed by time for discussion and questions.

Cell Press’s virtual event series on inclusive language in publishing brings together researchers and experts with the key perspectives needed to make science and the language of scientific publishing more inclusive and accurate. We’re now proud to offer these events—begun in 2023 as an internal Cell Press series to educate and support our editors and staff—to the broader scientific community. As an integral part of our 50th anniversary celebrations, these events seek to expand the reach of our speakers’ insightful perspectives and support our commitment to advocating for science and scientists. 

 

Panelist Hari Srinivasan, is a PhD neuroscience student researching the sensory domain in autism at Vanderbilt University, an alum of UC Berkeley where he ran a class on autism, a PD Soros Fellow, a Distinguished Fellow at the Frist Center for Autism and Innovation, and more.

Hari also writes extensively on disability and autism issues with multiple high impact essays in high profile media such as Time, Newsweek, Fortune, Boston Globe and Psychology Today.

Ofa Lahi Atu

"Ofa lahi atu" is a phrase in Tongan that is often used to express deep love and respect.

The literal English translation of "Ofa lahi atu" is "much love to you", but its meaning goes beyond the words themselves. In Tongan culture, the expression is often used to convey a sense of gratitude, humility, and reverence for others, nature, and the divine.

In a philosophical sense, "Ofa lahi atu" can be understood as a recognition of the underlying unity and interdependence of all things. It suggests that love and respect are not only essential for personal relationships but also for the harmonious functioning of society and the natural world.

The phrase "Ofa lahi atu" can be relevant in the context of autism and disability by emphasizing the importance of love, respect, and interconnectedness. People with disabilities, including autistics, often face social, emotional, and physical challenges that can make them feel isolated and marginalized.

By expressing and acting with a feeling of "Ofa lahi atu" towards autistics, society can convey deep love and respect for autistics, affirm their dignity and worth as human beings. remind us that our interconnectedness extends beyond our immediate social circles and includes all.  It can inspire us to work towards creating a more inclusive and supportive society that values diversity, promotes empathy, and fosters mutual understanding.

Groups in the autism space community too needs to express and act with a mindset of “Ofa lahi atu’ towards each other, instead of the current vicious bickering between polarized groups of “who has the loudest voice” and undermining other groups. We can recognize each others unique strengths, be accepting of all challenges methodologies, and perspectives and work towards solutions that address a wide range of needs.

Ubuntu

I came across this word today in our Public Voice Fellowship Training. 

Ubuntu as a framework has so many things that apply to autism advocacy, research, inclusivity, belonging, and the need for increasing knowledge and solutions in the autism space. More specifically I want to highlight. 

• Community-based approach to support autistics and their families.
• Emphasis on empathy and understanding, belonging and inclusivity
• Collaboration and cooperation which means working together to increase knowledge and solutions across the autism space instead of this conflict and undermining that is going on. We can find solutions for everyone, its not a one-size fits all. 

Ubuntu is the "I" in the "We"

Ubuntu is a philosophy that originated in Southern Africa, particularly among the Bantu peoples of South Africa, Zimbabwe, and Zambia. It is a philosophy that emphasizes the interconnectedness of all things and the importance of community, compassion, and respect for others.

At its core, the philosophy of Ubuntu is based on the idea that a person is a person through other people. Its the "I" in the "We." 

This means that individuals are not defined by their own accomplishments or achievements, but by their relationships with others and their contributions to the community. In other words, one's sense of self is deeply tied to their interactions with others and their ability to make a positive impact on the world around them.

Ubuntu also emphasizes the importance of compassion, empathy, and forgiveness. It encourages individuals to see the humanity in others, to treat everyone with respect and kindness, and to forgive others for their mistakes. This is based on the belief that everyone is connected, and that we are all responsible for creating a more just and equitable world.

In our own time and space

April is Autism Solutions Month. 

Came across a new word today. 

Takiwatanga is the Te Reo Māori word for Autism. It means "in their own time and space. " 

(The Māori are a Polynesian ethnic group of New Zealand and Te Reo =language)

 

Takiwatanga - what a nice way to phrase autism, cuz we often don't follow the expected developmental timelines, even within what autism is 'supposed' to be like, which has left me pretty confused and flustered over the years. 

"takiwa," = "area" or "territory,"

"tanga," = "to be in a state of."

So, Takiwatanga can be translated to mean "in their own time and space. " 

The word Takiwatanga is now used both in the Maori community and the larger community in New Zealand to refer to autism. It reflects the Maori cultural value of respecting and acknowledging the importance of each person's unique perspective and way of being in the world.

Boston Globe Op-Ed

https://www.bostonglobe.com/2023/04/22/opinion/autism-disability-person-first-language-identity-first-language-linguistics/

My first op-ed in a major media newspaper on an issue that still seems to dominate autism conversations. its time to put it to rest and move onto spending time on translatable solutions for all autistics.

The article discusses the linguistic controversy surrounding the use of identity-first language (e.g., "autistic") and person-first language (e.g., "person with autism"). I argue that the autism community can learn from other disability communities and embrace both types of language. The key takeaway is that it is not an either-or situation, and that the most important thing is to use language with empathy and respect.

Disability Studies Scholars

 Why do Disability Studies scholars want to use such complex, almost convoluted language when the same ideas and issues could've been distilled into less complex language?

Surely less complex formal language can be equally as powerful in its informational, argumentation and persuasive capability and in getting the point across successfully; without becoming "less scholarly".

I'm taking not one but two Disability Studies classes at U C Berkeley this semester, and while I love the lectures and discussion during class delivered by the outstanding professors here, my take on some of the "scholarly" readings are quite another thing.

In a recent reading it took many many pages before to express a simple idea. It was like going through layers of camouflage to get to that idea; jargon-ny language being the camouflage. 

There are actually some very good ideas and thoughts, that make us think, reflect, think of the interconnectedness of disability justice, climate justice, animal rights, marginalization, accessibility, stigma, discrimination etc.

But these all can be unearthed only after you strip off these veneers of other language which almost get in the way. You are left with a partial feeling of annoyance, impatience and exhaustion, when your mind should be fully engrossed over the thoughts presented in these readings.

The irony: Disability Studies talks the talk about accessibility and limited-spoons in the disability community. They need to walk the walk by showing and demonstrating how scholarly language itself (including their own)  can/should be accessible.

 irony is that many of these reading underline societal inaccessibility as a fundamental issue. Yet these very disability study readings are the very picture of inaccessibility. 

This is not a critique on other disciplines, that is a whole other discussion, but specifically disability studies.

The other question is, Does it not take extra spoons to strip off all those additional veeners to get to the gist of what the author is saying, for a "limited-spoons" disability population.

For those unfamiliar with the idea of spoons or spoon theory, its the idea that all of us have only so much bandwidth/spoons in one day. Every task takes some level of time and effort. When u are disabled, your bandwidth shrinks even more as some/much of the time is taken up by disability related challenges. You have to weigh in on where your spoons are best spent so you can carry onto successfully navigating another day.

The point:  Disability Studies scholars in particular need to lead by example to demonstrate what accessibility can look like in their own work.

And I'm taking not 1 but 2 disabilities studies class this sem.

As much as I love the lectures and discussion in class taught by some amazing faculty, some of the readings are quite another issue. In one recent reading it took over many many pages to explain one simple idea. All the while I was distracted, mentally jumping impatiently, almost a little annoyed, with a, What are you trying to say? & Just get to the point please."

Autism and Narrative Invention

https://www.dailycal.org/2019/10/11/professor-julia-miele-rodas-discusses-autism-narrative-invention-in-robinson-crusoe-at-wheeler-hall/

A very interesting talk by Julia Rodas on Oct 4 in Wheeler Hall.

Mental-Cripple

The term "mental cripple" has been used historically as a derogatory term to refer to people with intellectual or cognitive disabilities, and was often used in a way that reinforced negative stereotypes and discrimination against this population.

The term mental-cripple was used to refer to autistics as seen in this 1965 nice-page photo essay in Life Magazine featuring Dr Ivar Loovas and ABA therapy.