Ubiquitous Disability

On.y in the city of Berkeley do you actually see PWD (people with disabilities) actively about engaged in the community. Such a pleasure to see so many out and about. 

Like this person using her cane to cross the street. 

I've lived in Cupertino all my life, and rarely seen a wheelchair user or PWD on the street, other than the spl ed kids being dropped off by the yellow school bus and being scurried into their homes. 

Cal Football.v. North Texas

 Cal Football vs North Texas - 1:15 p.m. Kickoff.

Waving to my buddy David who sits on the other side.

Cal Bear Oski

With mascot Oski the Cal Bear at the PreGame Rally

Gotten a little better at standing closer to mascots.

Being skittish around mascots even if you know there is a student under that costume is I guess the autism part. Getting better each year.

Still, when Oski initially put an arm around my shoulder for the photo, I was ready to bolt.

Allistic

The term "allistic" is used to describe individuals who are not not autistic. 

The term "allistic" is intended to be a neutral term that does not carry any negative connotations or stigmatization.

Word Enabled Summer Internship

A farewell lunch for the team by Dr Victor Pineda after our summer internship with World Enabled.

What A Lovely Card and encouraging from Dr. Pineda

Breaking Barriers and Expanding Potential with World Enabled 

Taking Dr. Pineda’s class “Building the Inclusive City” at UC Berkeley this year allowed me to understand the theory and practice of inclusive urban development. However, working as a summer associate at Pineda Foundation / World Enabled opened my eyes to larger issues and trends in global disability rights. My week with ASAN (Autistic Self Advocacy Network) Leadership Academy in Washington DC, helped reinforce many of those ideas. I feel it boils down to the simple idea of inclusion. Yet it is not so simple on many levels starting with overturning historic perceptions and practices to the enforcement of measures and onto something that is not judged by how much it's going to cost and becomes a matter of fact. The not so simple part is the part I feel C4A is trying to tackle as we still have a long way to go even in the nations that are supposedly further along like the US.  

I did start off with some initial trepidation about whether I would be able to ‘manage’ the tasks of the project. Maybe this is part of the internalization of the ‘uncertain nature of capabilities’ that accompany a PWD living in a world of tasks tailored for the non-disabled. I’m a non speaking autistic who types to communicate making use of text to speech software. My brand of autism comes with its own set of challenges and comorbidities which include issues like poor fine motor, sensory dysregulation, emotion regulation, OCD, ADHD and anxiety amongst other things. My mind works much faster than the effort required to initiate and regulate the physical output by the body’s sensory-motor system which can make for slow typing and involuntary body movements. As trivial as it sounds, some of the ‘seemingly quick and simple’ motor tasks like manipulating and formatting of images and data can be an awkward process for me. To the observer, the awkwardness of some of my motor movements can seem at odds with the hyperactivity of other motor movements. 

Fortunately, a majority of the tasks assigned to me in this project aligned with my capabilities. I enjoyed both creating and editing the case studies. In the initial week, I have to admit that I was not quite clear about the exact expectations but once I got going it got better. Starting off by editing a few case studies gave me a better idea of expectations for the new case studies that I had to do. It was an enriching experience to research how countries who are signatories to the UNCRPD are now attempting to follow through. Data and information for some countries was scarce but I believe the studies provide snapshots of the movement all around the world, even if the progress in some nations is minimal. After all, every big avalanche initially started with that single snowflake. 

Editing work involved extensive rewrites in some, additions, rearranging material between sections and shortening long rambling narratives into crisper ones. My experience in writing for the student paper The Daily Californian, working with editors and being Asst Editor for some special issues certainly helped organize my thought process. So the task was not cognitively difficult for me, it just took me much more time to type than my peers.  In editing, I found it useful to first read the design and then structure other sections around it. There was just one case study where I completely redid the analysis on an autism school as I simply could not agree as an autistic that a segregated autism-only school was in line with the principles of Least Restrictive Environment. 

I also enjoyed the online team meetings. I got to participate as well as observe the thought process of each of my team members at the meetings, the latter being one of the highlights for me in any group work.  It actually worked in my favor that most of the meetings and work was done remotely. The less distracting environment of online meetings and remote work means I am more efficient and less stressed. I’m often torn between opting for face to face meets vs remote. Live interactions are more demanding of a social body language and contending with a sensorily distracting environment which means slower typing - all increasing my anxiety. On the other hand, more practice with live meets is probably needed to help me get over social anxiety in the long run. 

At UC Berkeley, I am majoring in Psychology and minoring in Disability Studies. The course and summer with World Enabled makes me wonder if public policy is an area I should also be exploring in grad school, which I hope is in the cards for me. It was truly fascinating to see how Dr. Pineda’s work played out at a global level and in different countries. 

I think I would love to work for the UN too and make a difference. My late grandfather had in fact done a lot of work in the arena of economic development in the developing nations of the South Pacific as a UN executive and had spoken of his work on numerous occasions. I have especially admired him as someone who would not let age defy him. Right after retiring, he stepped into a new career by first getting a law degree at age 60 and then successfully becoming a Supreme Court lawyer in India for the next two decades. As the primary member of the Eradi Commission, he helped draw up the framework for the now Consumer Protection Law in India. My late grandpa was a polished policy writer while my other grandpa is a poet and philosopher amongst other skills. Perhaps my writing and cognitive ability is from a combination of these genes. 

My mind wants to accomplish and explore so much - it is without boundaries. The body, however, is limited by space, movement, and time, more so when there is a disability. My unreliable body, emotions, and health need to cooperate and can sometimes make progress seem temporary. UC Berkeley has certainly opened up new worlds for me. I’m getting to do things I never imagined like this paid internship or being a Research Assistant or getting to be a student-teacher for a semester-long class on Autism. So I both wonder and worry about my life after college. At the end of the day, all of us (disabled or non-disabled) want to lead a productive and meaningful life, where we are contributing members of society. The employment arena has however not been kind to PWDs as highlighted by the colossal gap in employment rates between the disabled and non-disabled populations. 

It’s certainly a journey on uncharted waters for someone like me who has both some significant strengths and significant impairments which means I don’t fit into a standard category within autism itself. Current supports and programs in the autism space are geared towards linear autistic profiles but autism is not a linear spectrum and my issues are scattered across the spectrum. I may have to create my own niche which is both exciting and extremely nerve-racking. I’ve come to deeply admire Dr. Pineda and I think I have a lot to learn from him on deconstructing the seemingly impossible into a possible.  A mere decade ago, education, let alone college, did not seem like a possibility. That possibility became reality. So I remain optimistic that other opportunities will open up for me. 

The Ugly History of Disability Eugenics in the US

The eugenics movement emerged in the late 19th century in both the United States and Europe, and aimed to improve the genetic quality of the human population by promoting selective breeding and limiting the reproduction of those deemed "unfit" or "undesirable." The eugenics movement was strongly influenced by social Darwinism, a belief that human society should be structured based on principles of natural selection and survival of the fittest.

The first state to pass eugenic sterilization laws in the United States was Indiana in 1907, and by 1931, over 30 states had passed similar laws. These laws authorized the forced sterilization of individuals deemed "unfit" to reproduce, including people with disabilities, mental illness, and other conditions considered hereditary.

The procedures involved in eugenic sterilization varied, but commonly included surgical sterilization of women (tubal ligation) and men (vasectomy), as well as the use of X-rays or radiation to sterilize women. These procedures were often performed without the informed consent of the individual, and many people with disabilities were sterilized against their will.

In addition to sterilization, the eugenics movement also promoted the institutionalization and segregation of the disabled and other "undesirable" groups, as well as the promotion of restrictive immigration policies to limit the number of people considered "unfit" entering the country.

The eugenics movement in the United States began to decline in popularity after World War II, due in part to the association of eugenics of the Holocaust. In the 1960s and 1970s, disability advocacy groups began to challenge eugenic practices and call for greater rights and inclusions.

Forced sterilization of people with disabilities continued in some states in the United States until as recently as the 1980s, and many people with disabilities still live with the long-term effects of eugenic policies, including forced institutionalization and exclusion from mainstream society. Today, the legacy of eugenics continues to shape the way that people with disabilities are perceived and treated in society.

Also see posts on [Feeble-Minded] [Imbecile] 

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