Disability and Multilingualism

UNESCO is celebrating this International Literacy Day 2024 by highlighting multilingual changemakers on a global scale. Among them is Hari Srinivasan, a trailblazer for disability rights, who is a multilingual American child of immigrants

Read Full Article at unesco.org...

 

Disability and Multilingualism

Growing up, Hari Srinivasan remembers repeatedly learning about St. Patrick’s Day in his special education classroom—a holiday that, while interesting, felt disconnected from his own cultural heritage.

Read Full Article at unesco.org...

 

Disability and Multilingualism

 

The approach, shaped by clinicians who advised speaking only English to autistic children, paradoxically led to a loss of cultural identity rather than the inclusive exposure that neurotypical children might receive.

Read Full Article at unesco.org...

The Cost of Ableism - A Higher Bar to Meet and Negative Attribution Bias.

Ableism isn't just about overt discrimination; it also involves the pervasive expectations and pressures that can lead to negative attribution biases and the need to meet a higher bar for inclusion. 

The High Bar for Inclusion

Ableism manifests as an expectation for individuals with disabilities, to meet a higher bar for inclusion. This form of ableism places undue pressure on autistic individuals to conform to standards and norms typically designed without considering their unique needs and strengths. 

Unreasonable Expectations. Autistics are often expected to conform to neurotypical social behaviors and communication styles to be accepted in social, educational, or professional settings. This higher bar for inclusion is exhausting and unrealistic, disregarding the natural ways in which autistic individuals interact and express themselves.

Proving Competence. There is often an implicit or explicit requirement for  autistics to constantly prove their abilities and competence beyond what is expected of their NT peers. So its not about having to prove yourself one time, its proving competence in every repeated interaction and with every new person and with every new situation.This can stem from prejudiced assumptions about their capabilities, leading to significant stress and anxiety.

Extra Effort for Accommodation:  The burden of seeking and arranging accommodations frequently falls on autistic individuals. They may need to expend significant effort to advocate for themselves, explain their needs repeatedly, and navigate systems not designed to accommodate them easily. Accommodations for autism can vary depending on the autistic and there is no standard list of checkbox to tick off and say job done.

Perceived Advantage of Accommodations. Accommodations are often seen as giving autistic individuals an "advantage," which perversely leads to higher performance expectations. This perception overlooks the purpose of accommodations, which is to level the playing field, not to provide an edge. As a result, autistics may feel compelled that they have to over-perform to justify the accommodations they receive (which leads to burnout) or conversely may not be able to meet that higher bar. 

Gratefulness for Accommodations. Accommodations are often treated as favors being granted, leading to the expectation that autistic individuals should feel grateful for this largesse. This can create an imbalance in power dynamics, where the need for accommodations is seen as a privilege rather than a right, adding another layer of pressure on autistic individuals.

Higher Performance Standards In professional or academic settings, autistic individuals might be held to higher performance standards to counteract biases and demonstrate their worthiness for inclusion or advancement. This can lead to burnout and mental health issues, as they strive to meet expectations not equally applied to their neurotypical counterparts.

Social Acceptance Conditions. Inclusion in social groups might come with conditions that require autistic individuals to mask their natural behaviors or suppress their autistic traits, which is mentally and emotionally taxing. This masking forces individuals to hide their authentic selves to gain acceptance, rather than being embraced for who they truly are.

Normalization Pressure. The pressure to appear "normal" or "less autistic" and "not stim" is a significant barrier to genuine inclusion. This expectation forces individuals to suppress their identity to fit into a predefined mold, leading to stress and reduced self-esteem.

Negative Attribution Bias

Living in an ableist-centered world significantly influences the development of negative attribution biases among autistics. 

Frequent Experiences of Discrimination. Continuous exposure to ableism, where autistics face discrimination, exclusion, and negative stereotypes, leads to a general expectation of negative treatment from others. This constant barrage of negative experiences can result in heightened sensitivity to potential negative actions and intentions, fostering a negative attribution bias.

Social Marginalization. Being marginalized and misunderstood in social contexts can erode trust in others. When autistics repeatedly encounter negative, dismissive or hostile attitudes, they might start to interpret ambiguous social cues more negatively as a self-protective mechanism. This social marginalization reinforces the cycle of negative attribution.

Internalized Ableism. Constant exposure to societal ableism can lead to internalized ableism, where autistics begin to believe negative stereotypes about themselves. This internalized negativity colors their perceptions of others' behaviors, leading to a pervasive negative attribution bias.

Lack of Positive Social Interactions. Positive social interactions can counteract negative attribution biases by providing evidence of goodwill and understanding. However, if autistics have limited positive social experiences (or a history that is predominately negative) due to societal ableism, they are more prone to expecting and perceiving negative intentions in others, reinforcing their negative biases.

Stress and Anxiety. Living in an ableist society is inherently stressful and anxiety-inducing for individuals with autism. High levels of stress and anxiety impair social cognition, making it more challenging to interpret social cues accurately and leading to more negative attributions.

To combat these forms of ableism, a shift in societal attitudes and practices toward a more inclusive and equitable approach is necessary. This involves recognizing and valuing disability, creating environments that are inherently accommodating, and reducing the emphasis on conformity to neurotypical standards. Promoting awareness and understanding of ableism in all its forms is crucial in fostering true inclusion for individuals with autism and other disabilities.

Genuine inclusion means ensuring that everyone has the support they need to thrive.

Related Posts [Hostile Attribution Bias] [Neuroception]

Rewind: Interactions with Planet X

Rewinding to something I wrote many years ago in high school. 

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Interactions with Planet X

(So you want to help, but have no clue) 

My fellow Teens, 

You all probably know some people with disabilities. After all, it's fairly commonplace now. Words like Autism, Downs Syndrome and Cerebral Palsy abound in the news. You probably even feel sorry for them. But honestly, even a truckload of pity is not much use. 

You probably are also "initially freaked out" at meeting people with disabilities. (This is a direct quote from a high school volunteer I know.) Maybe you want to help, but have no idea how and what. 

Consider:- Once upon a time, we were all babies. Our life track was defined - preschool, elementary school, middle school, high school, college, job etc. 

A UCSD  sophomore was speaking of his college experiences to our SSE class last week. Many of his friends from Cupertino schools are with him in college, so his social circle remained somewhat homogeneous.  That had greatly aided his transition from the small school setting to life on an enormous college campus. I imagine it will be the same for most of you. Most of you probably have friends you've known all your life and who will be with you in college. 

Some of those babies however, ended up on a path that wandered off into the wilderness of disability. Years of therapy helped some get back onto a more typical path, especially if the right therapy was done at the right time with the right set of people who knew what to do. But there is no set formula and not everyone made a full or even partial turnaround. But biologically, the bodies kept growing and voila, they became Teens with Disabilities!

I speak not just for myself, but for all the others I've observed over the years. 

The therapy years are behind most teens, parents are exhausted and most therapists are giving up. Not an attractive picture! 

Many are headed into Homes and "residential facilities" after high school. Some are already in Homes. I had 3 classmates in 5th grade who came from a Home. The only time they got to go out, was if the school did outings, as the Home did not do that. All that my classmate Johnny ate at every meal, was cheese pizza - how healthy is that? Others, I know - post 18 and Indian - live at home with their parents. 

A few may make it to community college or even a university. A fortunate few may even end up doing a job they like and lead independent lives. But there are always additional hurdles at every step. 

Expectations are not high at this point.  Job training programs, at most, target low level jobs. How exciting will it be to toss burgers, especially if intellectually you are capable of so much more? Frustration rides high, and this translates into more behavioral issues. As it is, being a Teen is an emotional roller-coaster for most of you. Just add on a whole suitcase of emotional and physical struggles! 

Your world will open out as you go into college and beyond, while those of individuals with disabilities, may well narrow down. More doors shut with age. Ironically after age 22, govt. assistance and programs reduce significantly - just when we need it most. 

We're surrounded by adults a lot; but most are paid therapists who last just 1-2 years. There is a high turnover of people, which is very emotionally distressing. Working and assisting teens or adults is not considered a desirable profession, so one cannot expect any intelligent company either, going forward. 

Quality of Life however, goes beyond just basic care. It becomes a  'Lonely Planet X.’

So what was the point of telling you these depressing scenarios?

It is said that friends influence your character?  This is the area that individuals with disabilities really fall short on. It's going to be a bigger problem going forward, as more of this growing population of children with disabilities become adults. 

It is less your money that is needed, and more your humanity. 

And it is not just about playing board games once a month at a center. That gets real boring by the 3rd month. And irritating by the 6th month, because by then the same games start to feel like therapy. And teens (disabled or not) don't want to be subjected to preschool activities like circle-time! Oh the sheer indignity of having preschool circle-time in some of the Special Ed classrooms, years after our typical peers had stopped doing them. Are you surprised that many adults with disabilities still listen to Barney and Sesame Street?

It is about getting involved in their lives. Being involved does not mean being physically there all the time either. In today's Internet World, there are many avenues of communication - Facebook, email, text, a phone call etc...

Tell them about your own lives so that through you, they can learn and experience more. You will be surprised at the insights you get into your lives when viewed through their eyes.  Most are surprisingly sensitive and intelligent despite their outward body mannerisms.  A person may have cerebral palsy and be dependent on a wheelchair. They may not even be able to respond. But their minds will eagerly lap up information and conversation.  Don't expect responses, especially if the person has limited communication skills - just be there.  They will never cease to amaze you or surprise you.

Get to know a few individuals and continue to be in their lives. The key is to be a constant presence over many years.  Don't be a therapist who moves onto another client in 1-2 years. 

Check in during your school vacations, and during your college vacations. Visit if you can. 

Include them in some of your physical activities. Are you or your friends in a musical performance, band, team or play? Invite them to these - you will find no better cheerleaders. Do you belong to a group of some sort – you could find ways to include them at least some of the time. What do you do with your typical friends - do you just "hang out and chill.”? You'd be amazed at how many teens with disabilities long to do this but don't have the opportunity. 

Don't assume they don't know academics just because they haven't been formally taught it. Academic subjects are just a matter of perspective sometimes. In light of other challenges, it just seems a lot more straightforward. Tell them about what you do - why you find certain subjects difficult or which teacher is really lousy or good. 

It’s pretty hard to abuse drugs, smoke or drink if you are disabled. So you will in fact, be keeping very good company. 

Be an advocate for them and watch out for them in their lives. Friends of this disabled adult I know on Facebook, keep tabs on her online activity to watch for online predators and the like. Most individuals will outlast their parents, so friends are important in their lives. As you become an adult, there will be many such opportunities for advocacy. Dealing with bureaucracy is tough for most; imagine the disabled adult who has to face it 24x7. 

Consider - Pity is condescending, while Empathy and Friendship is Humanity. 

In the end, it's a win-win scenario for both. You will fulfill a real need and make a difference. Man is defined by his character, not by his wealth or his social status. You will be amazed at how these interactions will shape your life. 

Bring the Forgotten People on Lonely Planet X, back to the Humane Planet Earth. 

You may or may not choose to do something about this issue, or not be able to do so now. But perhaps you will later in your life. All this is Food for Thought.

Troubling Ableism in Neurodiversity

Written Oct 13 22. Still ironically relevant. 

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Troubling Ableism in Neurodiversity

Is Neurodiversity an Exclusion Club?

JUST HEARTBREAKING AND DISAPPOINTING

 

The Thursday morning Plenary Session of the College Autism Summit was an employer panel of companies hiring neurodiverse employees. The dictionary (dictionary.com) defines "plenary" as the most important session of the day "attended by all participants in a conference." ie: some impactful words of wisdom were expected. But...

These are remarks by a neurodivergent panelist who works for one of these large hiring companies. 

1. Most jobs hiring neurodiverse are in tech

2. Neurodiverse employment target "low-no" support-needs

3. Suggestion by this person as to what to do with the rest, the higher support neurodiverse:                 "Have companies ask their janitorial vendors to hire."

What was disillusioning - the comment was by a neurodiverse panelist on this employer panel. 

SERIOUSLY!!  An "othering" of remaining autistics.  So these "other" autistics, the moderate-high support needs autistics are only fit to be the cleaning crew!!

The irony in the choice of profession mentioned by the panelist is not lost on me. It's not that janitorial jobs have less dignity (all professions deserve dignity and respect) - but it's the idea of furthering the invisibility of this 'other' group . For instance, don't many cleaning crews usually work after the offices close for the day - out of sight of the public eye; a reminder of the UGLY LAWS (1867-1974) where disabled were fined/arrested for being seen in public as they were “visual disturbances.” (I remember being absolutely shocked and horrified when I had first learned of the existence of these laws in my first Disability Studies class at UC Berkeley with Prof Victor Pineda. Even cities were planned, such that “institutions” housing the disabled, were placed at the very outskirts of the city)

As it is, many many of the autistics peers I have grown up with (in the 'other' group) in my special education classrooms are disappearing into the black hole of day care programs/ group homes /institutions as adults, where they can be out of sight for the majority of society, even as families are struggling to support those individuals. Out of sight, out of mind, is a clean solution for society, as nothing more need to be done. In the meantime, they struggle in systems that trap them in the cycle of dependency, neglect and poverty due to inadequate services, supports and opportunities.

In the meantime, neurodiversity employment per this person is essentially an exclusive club where 'club members' will ask for rights derived from the long-fought-for Disability Rights Movement - that there must be employer cultural change where "low-no" are accepted, accommodated, advanced, given access to higher paying jobs, a chance at upward mobility, given a voice; even as they shut that avenue to other fellow disabled with a dismissive wave of - you are not good enough to join us, fit only for low wage jobs. A throwback to how disabled were viewed before the Disability Rights Movement. 

Isn't this imposing the very ABLEISM you are fighting the neurotypical world for?

Duplicity. Shame on you!'

With all sarcasm intended, the suggestion of "companies have their janitorial vendors hire," these 'other' autistics would  be a neatly packaged solution - corporate social responsibility accomplished as all autistics are now employed!! 

The new employment solution given for these 'other' autistics during this National Disability Employment month, apparently is not just LOW-WAGE but also preferably rendered INVISIBLE. 

If this is what the neurodiversity movement amounts to, then the whole idea of neurodiversity is a disillusioning sham. It's promoting exclusion, not inclusion. It's not upholding the disability rights mantra of "Nothing about us without us" or the Sins Valid Disability Justice principle of "Leadership of the Most Impacted" ie: there is no Disability Justice unless there is justice for the most marginalized. 

JUST DISILLUSIONING AND DISAPPOINTING

It's like being invited into the neurodiversity dining room cuz bad public image to leave you standing at the door. But once inside, you find you are not really at the main table with good food but the plan was to redirect you to the side table with scraps. Outside the dining room, society thinks the entire neurodiverse community has been fed.

So I have to ask what is the difference between other groups asking for a separate label/room and the neurodiversity community creating the same hierarchy inside the dining room.

 

MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST

No wonder service organizations like the Department of Rehabilitation are reluctant to support the college aspirations of these "other” autistics; why encourage college if the end goal for them is a minimum wage job at best. And even before that in the special education pipeline, a majority of 'other' autistics in special education are pushed towards the non-diploma track at the middle school age itself (never mind their personal goals that may be otherwise). 

Acceptance and inclusion to education and well-paying jobs is not just the right of some autistics/ neurodiverse, it must be for ALL. This is not why 8-year old Jennifer Keelan along with many others pulled themselves up the steps of Capitol Hill before the Americans with Disabilities Act was passed in 1990. This is not why 150 disabled people occupied the HHS offices at a San Francisco federal building for 28 days (the longest sit-in in US history) to get Section 504 passed. 

If the "remaining autistics" (the ones without privilege) don't get acceptance from our own autistic/neurodiverse community in the spaces they want to be in, how can we begin to expect acceptance and inclusion and belonging from the wider neurotypical community? 

MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST

Regarding the first points 1 and 2, I can still take it as a work in progress. We are still figuring out the how's

• Tech jobs are a START and I saw awareness of the need at various sessions of the conference to push autistic employment into non-tech fields. At least people are thinking about this. 

• The fact that companies are starting with  autistics perceived to be easier to support, can again be thought of as a START that we can build on - but by no means does it end with one subgroup. 

• It's ok to say we don't have all the solutions now. At least leave this door open so that we can continue to think on the hows. 

I will draw a parallel to scientific research to illustrate. We don't have all the explanations currently but we keep chipping away and will slowly unearth solutions. At times it's about arriving at the correct question and also the methods and evolution of available technology. But science and tech has kept pushing those frontiers. 

Likewise in autism research, most current research/tech looks at testable autistics -  which at least gives us a broad overview of issues. But we cannot stop there - for the next step we need to dig deeper at physiological level so we get to what's going on so we can find ways to better support everyone including these "other" autistics. 

Please be part of the solution and not part of the problem. 

For instance if we make headway in 

• Sensory areas (understanding at a physiological level to better support with tech or other solutions) 

• Communication piece (think  BCI that can bypass motor and sensory systems, more affordable intuitive AAC…) 

• Technology supports, that simplifies motor tasks/ executive planning around daily living skills (think robot helpers, self-driving cars, hybrid employment, more intuitive tech…)

• Translational precision medicine for underlying health issues and co-occurring conditions (in place of current diagnostic overshadowing).  

• Development of better meds to help with mental health needs, self-injurious behaviors, obsessive compulsive behaviors etc. Instead all we have is Big Pharma recycling/ rebranding drugs dating back to the 1950s. I was shocked to learn in my undergrad "Drugs and the Brain" class at UC Berkeley that even a minor tweak in just one branch of a drug's chemical structure allows for re-patenting which means continuation of the exorbitant high prices/profits. Did you know that ~30-40% of autistics are on medication for behaviors (Logan et al., 2012)?  I once also heard Dr Antonio Hardan of Stanford mention at the Stanford Autism Conference that these behavior drugs don't work the same way in autistics as in the general population - so why are we still over medicated with these same drugs.  

• empathic equitable policies

• ... more

Think then (with just this far-from-exhaustive list) of the incredible inclusion we can have of the entire spectrum of autistics in society, in higher education and in the workplace. What a huge improvement in quality of life that would be, not just for the autistics, but also for the world. 

I see policy, legislation, research, healthcare and societal mindsets as varying angles of the very same disability rights movement. 

I also have to wonder how much of a role negative media representation of these ‘other’ autistics plays in exclusionary practices by both society and segments of the neurodiverse community itself, especially if media continually shows you mainly in the context of meltdowns, or in other words as “visual disturbances” (Ugly Laws) that better be tucked out of sight. 

Worth does not have to be defined by how productive you are seen to be or how much you can contribute to the economy. But I am hopeful ALL AUTISTICS (the ones who aspire to higher education and aspire to work) will get to higher education and WORK at the job they want to work at. That some don't have to "settle" or be "steered" towards minimum-wage type work because society (which apparently also includes a segment of fellow neurodiverse individuals) think your life has less worth than theirs. 

Though we may not have all the solutions and are still working on the "How",
the message I want to send to ALL autistics is:

ALL does not mean SOME. 

ALL autistics have the right to any benefits/policies derived from the hard-won-struggles of the disability rights movement. 

ALL autistics have the right to access supports, and to spaces and opportunities you aspire to

ALL autistics have the right to Belong.

ALL autistics have Worth. 

(PS: The better parts of the CAN conf are in this post.)

Belonging v Inclusion

https://youtu.be/saQu9tv8MVU

 The message on the importance of BELONGING is still very relevant.

Made with Doha Debates for International Day of Disabled Persons

#IDPWD #IDPWD20

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@harisri108 #Redefine_the_Table #autism #belonging

Spectrum At Cal 10th 5K Run

The speech I gave at the Spectrum At Cal event today 

Hi everyone. My name is Hari Srinivasan.

Welcome to our in person 5 K run. We are so happy to be back, after the two years of uncertainty, that the pandemic had forced on us. I’m a senior here at Berkeley. I also teach a class on autism here at Berkeley. 

I've been part of this amazing Spectrum At Cal for most of my time here and had the privilege of being president of this wonderful student organization, last year. Spectrum at Cal provided a community for me during my time here at Berkeley. Spectrum at Cal not only does autism outreach, both within and outside the campus, but also all manner of volunteering activities, and fundraising, which go right back to community organizations, that support individuals on the spectrum. Our organization has grown so much even during the time I've been a Berkeley. If you are a local organization interested in partnering with us, please do reach out to us. Let's make change happen.

I'm super thrilled to have spent my undergraduate years at Berkeley, which is really the birthplace of the disability rights movement. We boast of the first ever disabled students program, with other universities in the country and across the world, learning from us. It did start off for physical disabilities, but grew to include all manner of disabilities.

Today, Autism, is one of the fastest growing neurodevelopmental disabilities. Autism in all its forms, has a voice and we want to make it heard. Did you know my friend David, and I are the first, and only two non speaking autistic students to be admitted to Berkeley. It goes to show that autism too, is a diversity category, with the wide range of neurodiverse minds, that come with it. Autism is not a one size fits all disability, so we need to be flexible, and open minded to accommodate everyone, even the most marginalized amongst us.

What you're hearing, is my text to speech voice, as I am a minimally speaking autistic. I need to use alternative technology for most conversations, as I can only speak a few basic words. Technology is not perfect, and not always intuitive to use, but it helps me get by. It is unfortunate that, society has somehow conflated cognition with the ability to be able to use your mouth muscles to talk. Which is just an ill logical idea, and rather ridiculous really.

As a result, we nonspeaking autistics are generally not thought to be, worthy of education, let alone college. We face tremendous gatekeeping of opportunities in all manner of areas, all our lives. Everyone deserves the same opportunity of education, inclusion, and belonging.

Every life has worth. I repeat, every life deserves worth.

I've personally very proud of the t-shirt, that Spectrum designed last year, which I am wearing. We all belong. We all belong. You belong and I belong. And belonging is an idea, I'm very passionate about.

There is a big difference in the idea of awareness, acceptance, inclusion and belonging. Awareness is passive, which leads to some sort of acceptance, or what I like to think of as, tolerance of our presence.
Inclusion for most part means, being allowed to exist in the same space as our non disabled peers. It's like sitting in the same classroom, as your non disabled peers, but both of you are on parallel tracks that never intersect. 

But Belonging is really the key, where you feel you are a part of a community.When your life is seen as having worth. Where you belong, and I too belong.

Only with more exposure to all manner of autistics, will there be a change in mindsets, and greater belonging. It can be a win-win for all.

The diversity of autism, is like a cocoon, that morphs into all sorts of unexpected colorful butterflies. If you notice our logo is a butterfly. The butterfly effect, says a small local change, can lead to profound, and complex changes around the world. The two butterflies intertwine, and spread out their wings. That is what you are all doing here today by participating. You are all part of the butterfly effect, that will change the way autism is perceived, understood, and accepted. And how we can all belong. If there is just one thing you got out of what I said today, go home with the idea of promoting belonging.

Welcome again to Spectrum at Cal's, 5K run.

A big shout out to my fellow spectrum members and to all the amazing volunteers, who have helped put this wonderful event together.

Have fun everyone.

Thank you.

https://youtu.be/MRGc4GMbXqs 

Here's the talk on ABC News

https://abc7news.com/11704823/?fbclid=IwAR2YUlLmFiCZa0K4i-EcZRwq1NOU-g87UB2WurgAjepzDckLX4BUnY8kZNk

 

and entertainment from the Cal Band and California Overtures.

School Districts and Compassion

"Hearing the comparison between how school districts treat autistic people based on their resources made me remember how my school district did their best to quarantine and isolate autistic people from others."

- from a student in the 1:54 Autism Spectum Disorder Class

Vision - Imagining the Future

 

Image Credit: Sophia Zaleski

Sharing art made by the Students in my 1:54 Autism DeCal class this semester, which reflects something (learned in class or outside) about autism.

Inclusion begins with Acceptance

 Autism Acceptance is not just acknowledging our differences and wearing a ribbon every April, but also saying I like you just for being you. That I believe and will act in a way that indicates that your life is of worth to me and to the rest of society - Hari Srinivasan  

 

 

 

#IDPWD Inclusion vs Belonging

 

A video message for the international day for persons with disabilities, Dec 3, 2020. #IDPWD #IDPWD20

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Belongingness

Acceptance and Inclusion of disabled people into all walks of society is no doubt an important first step.

But what we need goes beyond inclusion. Inclusion means just existing in the same space as non disabled people.

Disabled people need to not just be included, we need belonging. Belonging is a sense of community, where you are accepted as an equal member of the group and where your life is seen as having worth.

Belongingness in society, is I think, what we all yearn for at the end of the day, whether we are disabled or not.

Starting today, let us all strive together towards Belongingness.


-Hari Srinivasan