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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The Choice to Enter the Empathizing Soup

I wrote this shortly after I moved to Amajuba. As I was struggling to integrate and at a loss for amaZulu cultural topics, I used my psychology background to reflect on human behavior. I still struggle to connect with the PCV community at my post and after gaining permission from the Mozambique girl, decided to share this article. Maybe my lesson gained will benefit someone else.  Even though my college’s saying is actually “in the stew,” the message is still relevant.

Also Brene Brown’s work on empathy and vulnerability got me through college and currently maintains my sanity. If you are curious about the practice of empathy, here is a heartwarming animation of one of her talks.

The phenomenal counseling department at my alma mater describes empathy as being “in the soup” with someone. “In the soup” means a variety of adages, “meeting people where they are at” is my favorite, but essentially it is providing a safe place for emotional catharsis through reflective listening.  Being “in the soup” is the epitome of vulnerability. It is not fun or convenient (who would want to be covered in any soup especially on a day when you emotionally feel like crap) and like soup it is easy to make mistakes. Will your approach with the person heat up like a gazpacho with an unpalatable intensity or shut them down like a cooled chicken noodle neglected on the counter? We live in an intimating world with no Goldilocks guarantee with human beings, where we are in the “just the right” emotional state all the time and empathy is flawless.

Recently another member of SA 31 involuntarily joined the site-change-in-the-middle-of-service-club, and I asked how their interactions with the cohort have been. The reply that was they have not talked about this the cohort much because everyone has problems. This point was valid and it is a challenge. How much support is too much to ask for within the PCV community, where everyone struggles as living in an unfamiliar country with limited infrastructure is hard full stop? Honestly, I have not found a comfortable middle ground in honestly sharing my experience with the cohort and not overwhelming other PCVs. I am now intimidated to talk about the new site, and wish that I could simply express my thoughts without fears of judgement or evaluations of how I am integrating. These challenges make times when another PCV is empathetic especially meaningful and less stressful when the balance is set.

The Mozambique girl and I met when we were exchange students in Botswana. We both had challenging application processes but now she is a PCV in Mozambique! PST is an intense time for any PCV, and with this realization I tried to keep my emotional upheaval away from her experience. One weekend in Pretoria, I had a crappy day and Mozambique girl What’s apped me to check in. I dumped my frustration on her and held my breath to see the response. Instead of judging my approach or attitude, she simply let me vent and acknowledged that my situation sucks.

During a Sunday laundry session, I thought about the above conversations and it hit me; empathy is a choice. We can have automatic emotions when a loved one is in pain, but being supportive is a choice. We volunteer to step out of our comfort zone and subject ourselves to a situation that could “bring us down” because it is depressing with there is no fix. Everyone always has emotional baggage in their life. Seldom is empathizing with someone convenient, which is why the effort to be “in the soup” with someone is so meaningful. Empathy takes thought and practice, because it is individualized, means becoming vulnerable and willing to be checked.Empathy is not about our validation as “good people.” The person in pain is the ultimate decider of whether or not you are being supportive. Also, pain takes time, and the choice to be empathetic also means being along for the entire process. Grief for example, is a lifelong pain and people do not “get over” loss.

Any of us are capable of being empathetic, but it involves a decision that our relationships with other people outweigh our pain. In the middle of her PST, Mozambique girl was willing to enter into my unaesthetically pleasing service in South Africa. Peace Corps is in many ways a microcosm of life. All PCVs will be occupied with our own challenges and stressors, but we are still capable of balancing self-care, supporting our communities, and being there for other PCVs. It is intimidating because PCVs come from all different backgrounds, diversities, and we are constantly subjected to stress. In other words, we are Americans with a unique work context. You do not have to be directly impacted by a cause or even like the person to display empathy. Yet the option is there if you want to let another person they are not alone.

Unless there is another 23 year old, autistic, anxious, female and white PCV/public health graduate student in the Amajuba district of South Africa’s Kwa-Zulu Natal province, I do not expect you to walk in my stinky, size 10, wide shoes. It is impossible for you to understand my experiences fully and because I interpret things literally, popular shtick like “be positive” and war analogies actually make me more distressed.  I am admittedly a hard person to support. However simply listening to my thoughts, and trying to be in my “soup” gives me validation. As my thoughts on empathy evolve, I want to challenge this community to think about empathy in their own lives. The more we choose empathy, the less intimidation people will feel with asking for help and sharing their vulnerable experiences.

All the best,

Katey-Red

 

 

 

I’ve Still Got a lot of Fight Left in Me

While I was in Pretoria I stumbled upon Rachel Platten’s Fight Song. Usually I do not like war analogies with personal struggles (especially with health concerns), but this song moved me. Maybe it was how it was a fight song without athleticsm, the reference to 2 years, or the timing. Honestly, I seriously considered early termination (ETing in Peace Corps lingo or leaving before the 27 month commitment was up) several times when I was in Pretoria. At one point I could picture myself going back to New Mexico, throwing all my travel books away, and forgetting my plan to pursue global health. For many people, that would be the right decision however I would be miserable (even though I probably would be better at financial management if I did not travel abroad).

When PCVs experience hard situations (site dynamics, site change, crimes, illness, or assault, or family crisis) the post grapevine starts to generate sentiments that the PCVs should ET. I am also guilty of this, when you hear of people who are perpetually miserable with the PC lifestyle, sometimes you wish that you would make move for their happiness.  In a way, for PCVs who do decide that this is the best option, ETing becomes less stigmatized. However for those of us who decide to continue with service, this becomes a connotation of martyrs because we endure great suffering for our belief in Peace Corps. This is ridiculous.

As someone from a culture that prides themselves on martryrdom (Catholicsm), I am far from willingly compromising my well-being for my wholehearted belief in Peace Corps’ potential. Besides Peace Corps is not persecuting anyone and South Africa is still healing from a recent period of persecution, this country is not purposely torturing any PCV (no country is). I have met PCVs with a martyr-like philosophy when it comes to service, but they are not the ones who have dealt with adversity related to service. Everyone faces challenges, but the PCVs that have been the most supportive to me during this site change have experienced the hard situations mentioned above. (Several of the blogs in the directory are by PCVs who experienced adversity and still chose to fulfil their 2 year commitment).

When these PCVs shared their stories, I initially did what most PCVs do and wondered how they are still here. I was missing the point: they are still here. The situation enabled them to stay (again each situation is different and sometimes ETing is the best choice) and they have connections to their country. Whatever their reasons are they are still here and that is something to be respected.

I am still formulating my reasons why I stayed (besides Venda skirts…of course) but with the end of the year reflection I have a grasp. It comes down to the Manager’s comment he made in a letter before I left: what I am doing truly suits me. I love experiencing other cultures and learning from other people. Global health is a great combination of those two intrests and Peace Corps. Yeah South Africa annoys me on a regular basis (about as much as the US did back home), but I like being here in the global health field. I learn more about international health in South Africa then I would in a text book.

Yet If there is one thing I have learned from 2015, it is how many incredible people live in the Republic of South Africa. From the PCSA staff who took care of me for 8 weeks in Pretoria, to the 3 families who willingly tooked me in and give me Nguni names, and the 8 other families are hosting other PCVs and did not hesitate to host me for a couple days when I needed to remove myself from a situation, I am wanted in South Africa. At a time when I struggled to connect with the PCV community, my counterpart from site 1.0 called me twice in Pretoria just to check on me. A couple weeks ago the host family from site 1.0 What’s Apped me with the same intentions and given our weird relationship it was very kind. My vivacious Amajuba family always gives me jeqe when they make it because they know about my steamed bread addiction, and my 19 year old host sister/friend confides in me her dreams for the future while educating me on life in Amajuba. Yesterday I took a mental health day from the clinic and when my host sister had to run an errand there, the entire staff asked about me.

Everyone from the PCSA staff to the communities I have encountered in South Africa wants me to be successful. During times when my cohort could not be there (because they could not relate to my situations), South Africans have been supporting me, and keeping me glued to this country. I am not sure when I will have this opportunity to live in another country and make mistakes to learn from, where country nationals will provide feedback. I have had to fight to even be a PCV and with South Africa giving me every reason to remain here, I cannot back out of my commitment. Maybe in the future that answer will change but now…

I don’t really care if nobody else believes, cause I still got a lot of fight left in me.

-Rachel Platten

All the best,

Katey-Red

PS: on a random note, 2015 was a challenging year for me, but for autistic women it has been an excellent year for awareness. From Olivia Quigley’s win at the Special Olympics, to Girl Meets World’s humanizing portrayal of the female experience on the spectrum, and awesome book published (I have not read yet but still yea for the conversation starter). and finally my beloved alma matter hosting Temple Grandin, a wealth of beneficial discussion was generated. May we continue this conversation in 2016 and beyond.

Health Interviews

Originally written on the 28th of January

I do not want to focus too much on the medical restrictions, but since I could not find a description of how restrictions impact placement within the country I promised to share once the details of my case emerged.

Peace Corps South Africa was very efficient about getting us to the airport and accomplishing tasks right away, including our medical interviews after lunch. I had the chance to talk to one of the medical officers on the way to lunch and felt comfortable having her conduct my interview (although the other two medical officers also seemed lovely and I am ready to approach them if the need arises). Anyways she looked at all of my paper work, asked questions about headquarters’ concerns and the usual set of female reproductive health questions.

Basically due the asthma restriction (even though I corrected her and said that I do not have an asthma diagnosis) or I use an inhaler when dust gets overwhelming (sometimes one puff a year, although Tucson was brutal in that regard…I think I used it at least 10 times last semester), I have to be within 2 hours of a hospital and cannot live in a thatched roof. In my jetlag induced haze, I started to tear up, get slightly defensive. I thought, “if I have one more medical restriction I will not get to serve.” Thankfully, the Peace Corps Medical Officer (PCMO), saw beyond my defensiveness and told me that there was a former volunteer who was diagnosed with my label while in service in South Africa who served for two years without any concerns. Her intent is to support my 2 year commitment. Sounds like a plan to me!

As for the rest of SA 31, they know about my diagnosis. Autism emerged in the group conversation, and I had to address a misconception. I do not regret sharing that information and it is a relief that people know. Not only does it take the pressure off of me to disclose but I have had some really great conversations. This is how the world should work: a place where people are not afraid to share their life experiences.

Finally I just want to share that I know people with bipolar disorder, epilepsy, a congenital heart defect, hypoglycemia, depression, anxiety, and migraines in my cohort. We are all Peace Corps Trainees. The days of medical and mental needs hindering our abilities to serve in an international context are over.

SA 31: Some of the Many Trailblazers for Medical Concerns in the Peace Corps.

All the best,
Katey-Red