Disclosure: Silent at Site and Screaming Online

 

Before I begin, a family friend shared this article written by a 13-year-old girl on the spectrum and it was so well done that I had to pass it along. Please read her articulate descriptions about the challenges verbal autistics face. Also I have a blog category peace corps autistic style where I occasionally reflect on peace corps from an autistic view.

Sanibonani and hope you are having a nice April 2nd (which happens to coincide with autism awareness day … in my life as autism education is a 365-day job.) I have had a few requests lately to share more open my life as an autistic PCV and after a year in country, it is safe to say that I experience a unique service. In response to world autism day and the challenges I and all people on the autism spectrum navigate when the blue lights dim) here is one aspect of my South African life that s that is probably important to know when trying to understand my service (unless everyone has a meltdown-contingency-plan and I am just ignorant).

The first way I manage autism at site is I keep it private.

 In a sentence, mental health stigma is not my current job and the chance that disclosing compromises my ability to connect with communities is not worth the risk.

During PST (Pre-Service Training), our Volunteer and Support Committee asked us during a group session called “Fishbowl” if anyone was going to hide their identity or change their behaviors at site. This was directed towards LGBTQ+ identities but anyways, 10 seconds of silence go by before I finally shared behind my decision. When I was an exchange student in Botswana, I took abnormal psychology and heard from my classmates about how Batswana in rural areas perceive mental health concerns. Without access to adequate education on the mater, my classmates’ communities viewed labels from the DSM (Diagnostic Statistical Manual for Mental Illness) as bad and applied them to witchcraft. In the context of autism, it easy to extrapolate self-stimulation behavior towards supernatural beliefs in areas that struggle to even talk about disabilities full stop. I knew before staging that my initial plan would be to keep it private at site. Also, I want to have contributions to the world beyond my identity. I rather be remembered as Katey is autistic and this is the work she does with her brain’s capabilities than just Katey is autistic.

A year and two sites later, keeping it private still seems to be the best option. It is hard choice because not only is it emotionally tedious to keep a secret but mental health stigma is rampant and it could be a missed opportunity for education. However, I can barely describe stimming without Americans freaking out let alone in isiZulu! Yet if you take a page from one of my favorite psychological theories Maslow’s Hierarchy of Needs, people need to have their physical health maintained before they have the energy to focus on anything else. If my communities are barely coping with HIV, they probably are not ready to contemplate something abstract like mental health. People need to be open to constructive conversations about their biases for change to occur. Amajuba is not at that stage of readiness.

I reevaluate this decision often and If disclosure would benefit someone in my community, I may consider it. Also, I am aware that many South Africans have internet access and some have found this blog. Yet, there is limited access in my community, English use is limited, and again mental health is barely a conversation. I still have a contingency plan if this happens it does not seem to be a concern for the immediate future.

I acknowledge that my experience is vastly shaped by white and cisgender privilege and also I have the option to keep this private because autism does not threaten my life.  If I had a life threatening condition where the host family would need to react and get me to Duke City in an emergency, then I would have no choice but to disclose. Also there has been excellent progress with humanizing autism in American culture but until the day arrives when I have no fear of how people will react over my mental health history, I am allowed to say that I experience oppression.

This is the world I live in: I can obtain every international global health experience available and there is still the risk that potential employers will lack confidence in my abilities. If the solution proposed for my dilemma is to hide that experience from Americans a.) that reinforces the message that autistic behavior is shameful and b.) I cannot really hide autism, just ask my cohort who noticed my subtle rocking back and forth two days before I disclosed to the group (because a fellow PCV made a derogatory statement where autism was compared to living with HIV.)

Until more people openly serve and work with chronic health needs, this painful stereotype will continue to exist. I am very public about my experience online, within the PCV community, and in the US. I may keep my behaviors private in Amajuba just so I can get by but I want to try and address the root problem: Derogatory stereotypes derived from America’s medical profession that are ingrained in other cultures.

That is enough of my living paradox for today, but we will continue the conversation another time.

All the best,

Katey   

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