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. 

Language Choice

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.

Mental Age

The concept of "mental age" in assessments has been subject to criticism and limitations. Here are some reasons why

• Normative Bias: Mental age is based on comparing an individual's performance to the average performance of a specific age group. However, these age norms may not adequately account for cultural, linguistic, or socioeconomic differences. The concept assumes that all individuals progress at the same rate, which may not be true or fair across diverse populations.
• Arbitrary Cutoffs: Mental age relies on the notion of discrete age categories, which can lead to arbitrary cutoffs and potential misclassifications. Development is a continuous process, and individuals may display a range of abilities that do not neatly align with specific age groups.
• Lack of Sensitivity: The concept of mental age does not capture the full complexity and multidimensionality of human intelligence. It may oversimplify and overlook individual strengths, weaknesses, and variations in cognitive abilities across different domains.
• Limited Predictive Value: Mental age alone may not provide sufficient information about an individual's future development or functional outcomes. It does not account for the dynamic nature of cognitive abilities and the potential for growth and change over time.
• Reinforcement of Deficit-Based Approaches: The focus on mental age as a deficit-oriented measure may perpetuate stigmatization and negatively impact individuals' self-perception and opportunities for growth.

It is essential to approach assessments and diagnostic criteria with a comprehensive and nuanced perspective, considering multiple factors beyond a single measure like mental age to ensure a holistic understanding of an individual's abilities and needs.

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."

Log Kya Kahenge - Abelism in the South Asian Community

The event is a collaborative effort between three student groups on the UC Berkeley Campus. the ASUC Disabled Students Union, Spectrum At Cal and the ASUC Senator Ruchi Shah’s office

Even Recording https://youtu.be/ClM3urKLpko

"Disability. Even saying this word is stigmatized in South Asian culture. Saying you have a disability in desi culture automatically invites pity instead of empathy, advice without knowledge, and judgement without listening. The “log kya kahenge” mentality silences, isolates, and discourages people with disabilities. With ~15% of the global population identifying as having a disability, a large percentage being people of color, it is astonishing that disabled narrative, rights, and justice are often put on the back burner by governments and society alike.

While addressing disability justice issues is a long ongoing battle, as South Asians we can begin by finally addressing the ableism in our own community and learn how to foster a more inclusive environment for all. Join ASUC Senator Shah’s office, the ASUC Disabled Student’s Commission, and Spectrum at Cal for an educational and empowering discussion featuring South Asian disability and inclusion activists at Cal, from New York, and abroad! It’s time to move past this era of fear and “log kya kahenge” and embrace the diversity that makes our community so beautiful."

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.