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Author: Hari Srinivasan

Troubling Ableism in Neurodiversity by Hari Srinivasan

October 28, 2022October 28, 2022 Hari SrinivasanLeave a comment

The Thursday morning Plenary Session of the College Autism Summit 2022 was an employer panel of companies hiring neurodiverse employees.

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 panelist as to what to do with the rest, the higher support neurodiverse:
“Have companies ask their janitorial vendors to hire.”

What was disillusioning –  the suggestion was by a neurodiverse panelist on the employer panel.

SERIOUSLY!!
An “othering” of remaining autistics.

So these “other” autistics, the moderate-high support needs autisticsare 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” for the disabled, were placed at the 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.

Hari Srinivasan is a former member of the lab. He recently graduated UC Berkeley and is currently pursuing his PhD in Neuroscience at Vanderbilt.

HARI SRINIVASAN ON A NON-SPEAKING AUTISTIC AT RADMAD LAB

December 12, 2021November 30, 2022 Hari SrinivasanLeave a comment
Portrait of Hari Srinivasan

ABOUT

Hari Srinivasan is a minimally-speaking autistic at UC Berkeley majoring in psychology and minoring in Disability Studies. At Berkeley, he is lead instructor for a semester-long class on autism, is the first nonspeaking president of the student org, Spectrum at Cal, writes for the Daily Californian and is an RA at the university Psychology Labs as well as the UC Berkeley Disability Lab.

Hari’s Twitter →

I first heard about the Berkeley Disability Lab when I’d asked Prof Karen Nakamura for comments for an article I was writing. At that time she’d mentioned her lab and invited me to come visit.

The idea of a disability lab here at Cal intrigued me to no end. I wondered why I, as a person with a disability (autism), had not heard of it before. I came to the conclusion that like some of the disability-related resources at Cal, either you find it by accident or you graduate Cal without learning of its existence. The lab, started in 2018, was another well-kept secret much like the existence of disability student organizations or even autism student organizations on campus.

What is incredulous to me is that I even wrote a column on autism, “The Person Inside,” for the Daily Cal during my second semester, yet never knew of the existence of the “Spectrum: Autism at Cal” student organization at Cal till my 3rd semester and that too because I stumbled upon the Spectrum booth on Sproul Plaza quite by accident. And only when I took Prof. Victor Pineda’s City Planning and Public Policy class did I learn that there were actually other disability student bodies on campus. 

Alas, my state of autism is nebulous with its yo-yo of moods and anxiety so it was not until this semester had started did I make it to the Disability lab. I loved that a new rule was immediately added to the list of community rules for the lab, which went “Stimming is Ok.” Though Karen and lab manager Nate Tilton (who is also the parent of an autistic child) got it, I  think it left a lot of my neurotypical peers there quite puzzled and confused. Wanting to be PC I think they did not quite know how to ask what stimming was either.  

To elucidate, those rather off-beat body mannerisms and behaviors that you see me (or many other autistics) doing are referred to as stims (short for self-stimulatory behaviors). Stims are often due to differences in sensory regulation, which means that I often experience my environment in a different and quite extraordinary way. My sensory system can almost be hyper-aware and hyper-react to all sorts of environmental input (Daily Cal Article: Sensory Walkabout) from sounds to lights, crowds, the the weather and even the smell of some foods. Plus add on some obsessive compulsive behaviors and a dab of anxiety; the result is a veritable smorgasbord of stim body movements which are also coping mechanisms of sorts. Much of this stimming are involuntary and only increase when people stare. The level of stims themselves varies across autistics, to an extent that it’s barely noticeable in some to the very obvious stimming like in my case. Most autistics that have traditionally made it to colleges are “speaking” and much more “put-together” than me, so I am not altogether surprised at the reaction and puzzlement from my peers at Cal and in the lab.

The lab does some pretty amazing out-of-the-box thinking for accessibility. As Karen says we want to also enable people who just want to change the world but currently find all the tools to do so inaccessible on so many levels. It is rather humbling to be in a place that is serious about potential hacks and low cost solutions that can help the disabled community. I usually find that if the word “special-needs,” “disabled,”or “accessible” is attached to a product, the cost is usually double or triple.

Still, I wondered about my role in the lab and how I could contribute. While the lab did aim to help find solutions for those will less fine motor dexterity, my fellow students in the lab creating those solutions did not obviously seem to lack fine motor dexterity. With my poor fine motor skills and my oft times uncoordinated body movements, I have struggled with even simple tasks like lego building in the past – the pieces were too tiny and it was very hard to pry them apart even though I did ask for the Harry Potter Hogwarts Train Lego set long back. My fine motor challenges have been a considerable source of frustration over the years – no handwriting skill means the inability to do the rough work required for much of the math and science problems; it compounds the non-speaking part. I have the cognitive ability but also have oral & motor apraxia which limit exploring STEM, which I would have dearly loved. 

How would I be able to do any of the required tasks all of which seemed to require a good deal of fine motor skills? I thought maybe I would just be the ideas guy in the group, a role I have taken on in the past.

However, Karen quickly found a niche for me that takes advantage of my writing skill set and continue to give ideas- with Team Propaganda where I can both contribute ideas and write about what the lab is doing. She essentially tailored a new role for me. A Happy Ending!! So thank you Karen, for enabling me to be a contributing and productive member of the lab team.

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