As I was doing the Literature Review for my Haas Scholars Research, I came upon this research paper from Oxford University.
https://journals.sagepub.com/
I'm being quoted in this paper. OMG. totally Unexpected and too cool.
A Day in the Life
Interview for the Geek Club Books
Interview by Jenny Bristol
Illustration by Rebecca Burgess
Quotes from the Article
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, & needs are.
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.
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.
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.
Remembering George Floyd
Excerpts from Campus Mail.
Eight minutes and 46 seconds are etched in our minds forever. That is how long former and convicted police officer Derek Chauvin pushed his knee into George Floyd’s neck, suffocating and murdering him in public one year ago today. His death also symbolically represents the centuries of dehumanization of Black bodies across our nation beginning with the trans-Atlantic slave trade in 1619. The list of names of all the Black individuals who have lost their lives at the hands of police violence, transphobia, and belief systems that reinforce false notions of white supremacy are too many to name.
Black Lives Statistics
Did you know:
Black people are three times more likely than white people to be killed during a police encounter (Harvard School of Public Health June 2020);
Black drivers are more likely to be stopped by the police and three times more likely to be searched in comparison to white drivers;
Black people are four times more likely to experience the use of force during encounters with the police;
Once convicted of a crime, Black individuals receive longer and harsher sentences for the same offenses compared to white individuals.
Haas Scholar Orientation
Day 1: Introduction & Icebreakers / Interdisciplinary Exchanges
Day 1: Virtual Escape Room Activity
Day 2: Interdisiplinary Brainstorming
Session with Bob Haas
Mentions
Got a mention in the comments in an article around Elon Musk.......
https://www.independent.co.uk/voices/elon-musk-autism-aspergers-b1847069.html
Raghavan Thatha online
Came across a pic of my Raghavan Thatha (grandpa) online, in his heyday working for the UN in the pacific. There are more links of stuff he's done. Too cool.
SpectrumAtCal Spring 2021 Towards Belonging
These have to be the coolest T-Shirts
withe the very important message of "You Belong"
The nifty intertwining butterflies design is by Tory Benson, who is the current board member and incoming VP for Spectrum 21-22
Belonging Week
#WhyIAdvocate
Our Annual 5K Fundraiser
====
April 9th - Cross Cultural Panel
Spectrum is hosting a 
Cross-Cultural Panel
as a part of this Spring's Autism Acceptance & Belonging Week!
How is autism represented in different cultures?
What are some highlights and barriers of autism advocacy in different countries?
What could we do to support?
....
We are amazingly honored to welcome panelists who are coming from different cultural backgrounds and doing autism advocacy works at different places of the world! Even more, many of them are actually on the autism spectrum themselves, or parents of autistics.
Event Time: April 9th (Friday), 6-7:30 Pacific Time
Register now to hear about their experiences and international perspectives!!: tinyurl.com/cross-cultural-panel
Cross-Cultural Panel as a part of this Spring's Autism Acceptance & Belonging Week!How is autism represented in different cultures?What are some highlights and barriers of autism advocacy in different countries?What could we do to support?....
We are amazingly honored to welcome panelists who are coming from different cultural backgrounds and doing autism advocacy works at different places of the world! Even more, many of them are actually on the autism spectrum themselves, or parents of autistics.
- Igor Pereira (on the spectrum): lawyer organizing autism movement in Brazil
- Irma Aguilar-Deflin (on the spectrum): advocate from Mexico City
- Dr. Shari D Rosen (parent): founder of the first special education center in Shanghai
Event Time: April 9th (Friday), 6-7:30 Pacific Time
Register now to hear about their experiences and international perspectives!!: tinyurl.com/cross-cultural-panelFireside Chats
FiresideChat#1
FiresideChat#2
FiresideChat#3 - Autism in the Media
Dont Cant Wont - Masking Camouflaging
Don't Can't Won't - Masking Camouflaging
Autistics engage in Masking
Autistics engage in Camouflaging
Attempts at passing muster, appear more "normal", make eye contact
........Effortful
........All verily exhausting
........ Very very exhausting
Contributors to Autistic Burnout.
Meltdowns and Autistic Burnout
Burnout, Burnout.
BUT, NonSpeaking Autistics
... Don't possibly Mask
... Can't possibly Camouflage
Why it is quite certain that Nonspeakers
....Won't experience Burnout.
ONLY Meltdowns, but NOT Burnout!
They don't, they can't, they won't
Déjà vu
...Don't
...Can't
...Won't
...Not Possible, No agency!!
Sorrowful words oft heard before
Ableist terminology. Disappointing!!
Reality!!
We struggle as all autistics do
Attempts at masking and camouflaging
Sometimes it works, we pass muster
Other times, its a Partial No-Go
maybe even a Total "Oh-No!!"
Masking and Camouflaging
Walk without stares in society
No one likes to be gawked at
Fly under the radar is often the goal.
Fly under the radar is often the goal.
Basic self-safety oft at stake
Sprinkle on apraxia and comorbidities
the result
....variable & unreliable steering controls.
The body, a car with a loose steering wheel
unpredictable in the way it will go.
Effort required multiplied, magnified.
Autistic Burnout
Burnout Burnout Burnout
Burnout Burnout
Burnout
Related Posts
Masking & Camouflaging.
https://uniquelyhari.blogspot.com/2021/09/cm.html
Triple Bind and Masking in Autistic Females
https://uniquelyhari.blogspot.com/2021/04/triple-bind-masking.html
Masking as an evolutionary advantage
https://uniquelyhari.blogspot.com/2020/04/masking-as-evolutionary-advantage.html
CAT-Q measure to measure camouflaging in autistic females.
https://uniquelyhari.blogspot.com/2021/04/cat-q-measure-to-measure-camouflaging.html
Dont Cant Wont - Masking Camouflaging
https://uniquelyhari.blogspot.com/2021/05/dcw.html
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."
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