Disability and Multilingualism
All humans live in a cycle of dependency
This incredible TIME piece by Hari Srinivasan beautifully articulates so many of the complicated feelings I have about my son’s journey to independence.
“Addressing the loneliness epidemic in the disabled community necessitates a nuanced understanding of independence because in actuality, all humans live in a cycle of dependency. The perceived division between independence and dependence is a flawed notion. Embracing this truth could pave the way for a more inclusive society that transcends the limitations of societal norms and helps us build better support systems that result in enduring human social connections for people with autism.”
Disability and Multilingualism
Disability and Multilingualism
Disability and Multilingualism
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.
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.
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.
Living in an ableist-centered world significantly influences the development of negative attribution biases among autistics.
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.
Genuine inclusion means ensuring that everyone has the support they need to thrive.
Rewind: Interactions with Planet X
Rewinding to something I wrote many years ago in high school.
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Interactions with Planet X
Troubling Ableism in Neurodiversity
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." |
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
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.
Belonging v Inclusion
https://youtu.be/saQu9tv8MVU
The message on the importance of BELONGING is still very relevant.
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.
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.
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.
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
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