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