Disability is not a tragedy: A Review of the Being Heumann Memoir

 Content warnings: discussions of ableism, violence, the Holocaust, and the Israel-Palestine conflict follow below.

A Disability Advocate
Disability is seen as a cause of despair, as a life merely of limits. The great advocate Judy Heumann, in the 2020 memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, powerfully dispels this perception. Her activist trajectory ranges from unwitting beginnings as a child stricken with polio to international stature as a senior official in the U.S. government. At first, I lacked familiarity with the trail she blazed. Now I know. From Judy Heumann’s influence, we have the power to build a more inclusive, loving world. 

 Many lines stand out in Judy’s incisive descriptions of disability. Three examples of disability as a “bad thing” in popular art are laid out in the book, highlighting the ubiquity of this experience. Being a sci-fi fan, I am drawn to a particular character.

“A man acquires a disability and turns villainous in the face of the agony.
Star Wars’ Darth Vader.

Disability is seen as a burden, a tragedy.

But what if it wasn’t?
What if someone’s story began with the words: ‘I never wished I didn’t have a   disability’” (Heumann 201).

Herein there are two fundamental poles of disability – tragedy and joy. Darth Vader – a paraplegic man sustained by a high-tech suit – is described as the death of his previous identity, emphasizing the tragedy pole. However, what if the story prioritized disability joy? Briefly, in Return of the Jedi, he acts of his own will to end suffering for his son, showcasing a sliver of joy. What if Darth Vader had gotten to simply live after ‘waking’?

Judy wielded her perspective as a chisel upon the statue of the world, a world of barriers. A seasoned bureaucrat working in the Clinton administration (during the 1990s). The first World Bank Adviser on Disability and Development. Most famously, the newly created Special Adviser on International Disability in the U.S. Department of State. There, she guided U.S. efforts to ratify the instrumental United Nations Convention on the Rights for People With Disabilities, joining many countries. In the course of duties, for example, she raised accessibility concerns about the Amman, Jordan city hall. Judy exclaims, “Two weeks later the city hall in Amman had a wheelchair ramp, designed in the architectural style of the building” (194). As part of her legacy, the American-led disability rights movement expanded worldwide.

Such an instrumental person deserves our attention and admiration for surpassing infinite obstacles. Below, I share her accomplishments.

As a childhood survivor of polio, Judy began using a wheelchair in the 1950s, long before disability was recognized as a matter of civil rights. The seed of activism was planted in Judy by her parents. Ilse and Warner Heumann were both orphaned by the Holocaust and sent to live in the U.S. as teenagers, incubating a strong sense of justice in them. Just down the page, Judy explains that the Holocaust sought to kill people with disabilities for being a threat to genetic purity. The stage is set for her fight with resistant institutions.

She was blocked in ways that are hard to imagine for those of us born in the U.S. after 1990. “Judy is a fire hazard” (8), said the principal of a public school about her wheelchair. Even after studying Hebrew, she was denied a spot at the local yeshiva or Jewish day school. Home instruction was (seemingly begrudgingly) permitted until one day she was accepted into a special school for students with disabilities in a basement. An inch closer to education integration.

Enduring this gauntlet set the stage for Judy to enter ‘real’ high school, move onto university, and focus on her mission of teaching others. At the time, teaching was not considered a profession for anyone with a disability. Though the barriers did not desist, she did resist.

For the heinous crime of….wanting to teach from a wheelchair…she was declared insubordinate by the New York City Board of Education. This denial of teaching license catalyzed her explosive growth as an advocate. The American Civil Liberties Union – a group that very well should have offered full-throated support – refused to take the case so she “called [a disabled guy she knew at the New York Times] and told him about the Board of Education’s decision” (55), kicking up a storm of public scrutiny. In a public court case, she proved the board decisively wrong and started teaching students with and without disabilities, demonstrating her determination.

The book’s closing chapter asserts the 504 sit-in as her activism’s cornerstone. Note that “504” is a special number that describes educational plans for students with disabilities. I was on one. Section 504 is a small portion of the Rehabilitation Act, but it prompted the longest takeover of a government building in U.S. history. Why? Put simply, 504 establishes the legal possibility of discrimination against disability – massive and unprecedented.

A hard struggle passed before the law took effect, followed by greater bitter pushback. Judy played an instrumental role in the building takeover, drafting the 504 legislation, and fighting for its implementation. In short, without her, this progress may have perished in the brainstorming phase. To learn more about this event, read the memoir. From the 504 rises the all-important “ADA”. It’s so critical that I consider myself a “Post-ADA” person.

If the acronym means nothing to you, you can hardly be blamed. Despite its importance, the ADA is treated as a mere fact of life now. The Americans with Disabilities Act was signed in 1990 by George H.W. Bush who proclaimed “’Let the shameful wall of exclusion finally come tumbling down’” (171), reflecting a new mentality. Judy describes the ADA as “the strongest, most comprehensive civil rights legislation for disability in the world” (171). This act finally brought the promise of being an equal citizen in the U.S. and maybe elsewhere.

How did such a law come to be? Motivated by 504, people with disabilities agitated for their due justice and civil rights, leading to the ADA. Activists decisively crawled the eighty-three marble steps to the U.S. Capitol, which elevated the struggle’s stature. Judy presents, “Pushing themselves out of their wheelchairs, dropping their crutches to the side, leaving any other mobility assistance behind, they began to climb the steps” (170). Truly, the ADA is where disability rights became a full movement with Judy as more of a careful caretaker. A critic could argue that the ADA only has merit within the U.S. and for a limited group. However, as one example of its worldwide reach, Judy promoted the U.N. convention, itself largely based on the ADA[1], and encouraged accessible renovations to U.S. embassies and foreign government buildings like the Amman city hall.  


The Work Done and To Be Done
Being Heumann, which came out in 2020, pushes us to look forward. For instance, Judy writes, “Because we already have the vehicle to make our society fair, to give everyone a voice, to protect and advance the rights of those who are marginalized, and create the shared institutions that support us all. It’s our democracy” (208). These words demonstrate how advocacy can bring out a better world – through directed action.

For example, under the shadows of a brutal pandemic, activists have pushed for and received some tremendous changes over the last four years. Telehealth became much more widely accessible than before, alleviating risk of infection and physical access concerns. The reauthorization of the Federal Aviation Agency in 2024 carves out improved guardrails for air travelers with disabilities, which has taken a full fifty years. Promising experimental medicines, including novel gene therapies, are receiving record approvals by regulatory bodies across the world for those who wish to take them. Finally, people with disabilities have made themselves better known since the book came out.

Unsurprisingly, despite a plethora of great news, access and accommodations remain deeply challenging globally.  The ADA, Section 504, and the U.N. Convention moved the needle on disability rights but did not resolve all deep-seated tensions. Much work remains for integrating people with disabilities with employment and broader life opportunities. My experiences assure infinite examples. Perhaps you even see this in your own lives.

Instead of wallowing in despair, I want to offer ideas for how you can get involved. These are suggestions about how to relate to barriers many people with disabilities face.

1. Keep an eye out for what may not be accessible. What physical impediments stop people with mobility limitations? When do public resources exclude deaf people by not providing a visual supplementation to verbal information?  How about when instructions are difficult to understand for neurodivergent people? In general, when are people excluded for not matching societal norms of ability? Just a few questions to consider barriers in society.

2. Fight for healthcare that expansively covers the needs of people with disabilities many of whom need access to specialist doctors (cardiologists, neurologists, physical therapists, and endocrinologists to name a few). In the U.S., universal healthcare is desperately needed; however, other countries, like Canada, have universal coverage that may still not cover the needs of people with disabilities. Though universal healthcare provides greater access to necessary medical care, this is not itself sufficient. No matter the country, there is need for healthcare systems to support these populations, instead of rationing their care.

3. Imagine disability justice as a full solidarity movement. Ability coincides with race, gender, sexuality, class, religion, and even geopolitical identity. Often, disability is cordoned off in a special category away from other identities and treated as “solved” by the ADA, requiring no more action. In fact, Judy’s memoir highlights how numerous groups – like the Black Panthers, LGBT+ organizations, and more – collaborate with disability rights activists. These groups may not even be entirely separate to begin with.

Just three instances of this overlap are presented below: 1) My lifestory; 2) disability and reproductive freedom; and 3) the War on Gaza.

I live in the interfaces of identities myself. As a Pakistani-American with muscular dystrophy, I stare down my own journey across disability. Some aspects are implicit, some are not. My class-privileged background also eases my ability to receive necessary care. My cultural associations of community support drive my different approach to disability rights. My view of a person with disability varies based on my snapshot of lived experiences.

Conceptually, disability is often separated from reproductive freedom. Despite how people with disabilities (of all genders) give birth, receive abortions, and seek other forms of reproductive medicine. At an ACLU of Oregon lobby day, I forged this connection and championed reproductive freedoms with state legislators as a disability rights advocate. There’s a few reasons why they are related. Much of reproductive healthcare – involving birth, abortion, egg freezing, and more – relies on medicine that is multi-purpose and used to treat a host of conditions. Furthermore, this process underpins healthcare at large – with attacks on abortion and other care hurting the process of receiving health in general.  Lastly, perhaps most crucially, if facilities cannot be accessed by people with disabilities, they are blocked from their rightful resources.

Ability intersects with geopolitical concerns – even though disability rarely receives explicit notice. No place more dramatically reflects this reality than the recent War on Gaza. Rashid Khalidi’s insightful, incisive 2020 book – The Hundred Years’ War on Palestine – implies pervasive ableism through decades of attempted annihilation. Intense bombardment destroys buildings, sidewalks, roads, medical facilities, universities, and lives. Travel by rubble blocks many Palestinians with mobility limitations, many of whom were rendered this way by violence. Crutches, wheelchairs, oxygen tanks, anesthesia, various other medical supplies, and even food are generally banned from entering Gaza[2] – compounding these brutal obstacles.[3] An example of targeted ableism appeared earlier this year when a man with Down Syndrome named Muhammed Bhar, posing no threat to soldiers, was mercilessly killed.[4] In his final moments, he apparently spoke his first words to gently ask his attacker to stop, showing full humanity.

Looking Ahead
Being Heumann, the memoir Judy Heumann was hesitant to write, reflects her great legacy in shepherding progress towards a brighter future. Despite being known as an instrumental player in essential disability legislation, she devotes few pages to it, instead focusing on her many collaborators. Judy Heumann’s great legacy as an activist comes from her ability to surgically target issues facing people with disabilities and to rally others around solving these problems. This expose further reveals the grand solidarity of the disability justice movement, encompassing all forms of life. 

A plethora of experiences requires a plethora of discussions. We all learn and grow from others. As an activist myself, I found myself humbled by reading this book. In fact, at a town hall a few months ago, my state senator brought up this book in response to my question about how the state legislature is removing barriers for people with disabilities. Learning about this memoir was collaborative for me. Disability activism – and advocacy at large – require us to be fully open to the many contributors around us. My own tributes to disability advocacy pale in comparison to Judy’s; through this revelation, I seek to redouble my own efforts.

As a community, we can look for ways to create a more inclusive world for people in general in line with disability justice’s broad coalition. To achieve this, the world must reduce barriers that limit many people with disabilities. We must start small with what is around us and build up to changing society itself.

Books Consulted:

Heumann, Judith with Kristen Joiner. Being Heumann: An Unrepentant Memoir of a                     Disability Rights Activist. Beacon Press, 2020.

Khalidi, Rashid I. The Hundred Years’ War on Palestine: A History of Settler Colonial                 Conquest and Resistance, 1917-2017. Metropolitan Books, 2020.

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[1] The Convention was completed in 2006 under President George W. Bush. However, the president decided to pass on signing the U.N. convention because of the ADA. Instead, President Barack Obama, under whom Judy worked, signed the convention in 2009.

[2] https://apnews.com/article/israel-gaza-rafah-aid-us-senators-2bc2a3c5e5f8af8e2d3f0b7242c1a885. Accessed September 17^th, 2024.

[3] https://www.merkley.senate.gov/merkley-gaza-needs-a-massive-increase-in-humanitarian-aid-immediately-opinion/. Accessed September 17^th, 2024.

[4] https://www.bbc.com/news/articles/cz9drj14e0lo. Accessed September 17^th, 2024.

War’s Quagmires and Structures: A Review of Bridge on The River Kwai (1957)

Bridge on the River Kwai is praised for good reason with great cinematography and a deeply moving drama at the core. Certainly is kin to Lawrence of Arabia, also by David Lean. A really rich irony to so much of the film being about building the bridge, moving it down the river downstream to a better location and building anew, and then blowing up the bridge. This reminds me of the futility of war -- that rules will break down, and communication will break down, but people will reason that the rules must be followed to the end.  In this case, the rules are the Geneva Conventions, which prohibit putting prisoners to manual labor – such an insistence, however, does not save them. Even the shared rules governing the British army do not prevent the tragic conflict that emerges within their ranks thanks to their leadership. In this sense, the film steps away from being British vs Japanese and becoming a story of the nature of war. The fall of the Bridge over Kwai therefore is a symbol not of mutual understanding but of the discord of trying to survive this prison camp.

The cast is peppered with interestingly diverse characters. I especially liked Clipton, the medical officer, a small player in this massive situation. He is recurring, amusing, and thoughtful like a sort of tertiary main character. Colonels Nicholson and Saito – the main military leaders for the British and Japanese respectively– get caught up in their support of "the rules", even if they argue it from different standpoints. By contrast, Commander Shears, the American, has spent time in Saito’s prisoner camp and has adopted a more pragmatic lust for life in opposition to the “rules”.  Because these characters are so distinct, despite their high number, you get a feeling for each of them individually, including often insightful and even hilarious dialogue.

However, the film does still rely on a British point of view -- even the British colonization and administration of India seems to be implicitly favored -- and does not seem to give us much insight into the Thai or the Sri Lankan perspectives of the wars they're forced into. The setting is essentially split between Ceylon (the colonial name for Sri Lanka) and Siam (the colonial name for Thailand). Sri Lankan people scarcely appear in this entire film, writing them off into oblivion. By contrast, Thai people do appear, and even speak in Thai, including figures like guide Yai and equipment-carrying women. For characters that spend significant amounts of time on screen, they aren't given much insight or time – even though at least a couple characters know or pick up Thai and a couple pick up English. Feels like an unfair shorthand – focusing just on the British and allies vs the Japanese – when could get to see the war from a third perspective. Furthermore, the soundtrack sometimes comes across as a little eager, which occasionally cements a colonial vibe.

 

Despite this description, Bridge on the River Kwai is a great film that is worthy of both viewing and study. Excellent sense of scope counteracts these challenges of story framing. With sweeping shots of the jungle, or far off distances of soldiers marching, Lean's direction captures the cast as small compared to their gaping surroundings. One such instance depicts bats flying overhead, disrupted by gunfire, dwarfing the scale of human action. By closing with a zoom out shot, Lean's film demonstrates that we humans are tiny, through Clipton's conflicted perspective, a simple dot against the machines of war. “Madness,” to pull from the medical officer’s closing words, is this whole affair.

 

Restorative Reminiscence: Flipping through the Pages of 2023-2024 by way of Spring

                                                                        

 

 

 

 

 

 

 

Welcome to my diabolical tea party where all shall be reveal--. 

Hold on. Sorry about that. 

Wrong crowd.

Sometimes I think about my own history. Looking back over one year reveals all sorts of things I thought were forgotten to the contours of time. Spring steadily chipping winter's armor makes for a great time of reflection. Time to make like a mirror and reflect.

Astute observers may note that my last reflection indicated some hope for pursuing a Ph.D. However, I left it in August 2023 after two years of false promises and broken links – the cause of a deep yet sincere feeling of betrayal. At first brush, this is just disruption from the pandemic. It’s not, though, because we are in “normal” times again where I must be doing ‘something.’ Submitting 200+ applications – to graduate schools, to hospitals, to biotechnology companies, even to community college teaching -- over the past several months. By my count, 70+ meetings to help me sort out my life during this time.

Despite how wrong this situation has felt, I at least take great solace in returning home and finding a new path forward. As a result, I intend this post to still be a happy one.

Table of Contents
1. By the Numbers and the Pictures
2. Forging a New Life Path
3. State of my Well-Being
4. Advocating for a Better Future
5. Toastmasters-ing
6. Media Exploration
7. Reflection Recap

By the Numbers and the Pictures
In this section, I like to give a rundown of the events of this year. Please see the below mixture of words and pictures. Here my goal is brevity and leaving the events to the imagination. If you want more, you'll have to get that information out of me!

While in Ohio, I experienced my second spring. Part of this experience involved Ramadan once again. I finally attended Eid at a family friend's house, helping me feel rooted in this land finally. I took a 30 minute Uber ride both ways, which made me feel especially independent. 

 

A view of Ohio blooming (April 2023).

The New Pornographers playing at a musical venue not far from me. Most strikingly, this concert occurred on May 9th -- the day after passing my excruciating deadline. With such a difficult situation, it was a great pleasure to hear some upbeat, jovial music. They closed the concert with their classic "Bleeding Heart Show".  An incredible moment of ecstasy sprang from this one moment.

 

With my 30th birthday coming up, I made a return trip to Oregon again in May.  A few days before then, I went on a warm day to the Tualatin Wildlife Refuge. Not super exciting for seeing animals yet the truly native landscapes were still a special sight.

My worry declined rapidly after a certain day. The birthday itself came and went. I got to spend time with family, munch on Thai and Japanese food, and allow year 30 to roll by. This relaxation helped me manage the stress of returning to school.

A lovely jaunt on Mt Hood in early July. Seeing skiers going down the glacier  in July was incredible. I just stepped in snow and appreciated the reddish-brown earth now exposed. The 7000ft elevation sun rewarded me with a light sunburn on my ears. 

My return visit to Oregon in July was not precipitated by this mountain trip, as you might guess. Something so important I needed to check out my suits again.  Preparation required.

The saddest experience of adulthood happened: my old suit no longer fit so I used my dad's old suit. Dressed up to a level unseen for years. The occasion? A childhood friend of mine got married at this lovely venue with greenery hanging over us. I even met the bride for the first time. At weddings, the bride and groom are always the busiest, which made this even more special. Truly, it was a great time.

Returning to Ohio after the wedding was a little bit tough. I was forced back to earth a short month after the wedding  When my PhD came prematurely to a halt. The last days in Ohio were surreal, blurry times. In spite of that, the day of August 21 -- two days before the departure -- stood out for two positive reasons: 1) this duck that was weirdly calm about being right within reach and 2) eating at my second favorite Middle Eastern restaurant with two friends from my program. One friend has dietary restrictions, so I was glad that we found an appropriate place. It was both friends' first time eating Lebanese food. Afterwards, we took a photo, which really eased the pain of leaving. Disorientation still followed.

The day after my return (Aug 24th) was a day of recovering from this strangeness. On the following day, I ate at Tanaka -- a restaurant with a nice fish katsu sandwich. They played an absurd number of songs I knew. "Seven Nation Army", "Scar Tissue" and "Someday" to name just a few tunes. There was a full dose of nostalgia. August 26th brought with it an Islamic society event at Hagg Lake -- featuring burgers and conversations while under the searing sun. I desperately absorbed an ounce of normalcy.

For the rest of this story by pictures, I highlight great sights seen. The details of life -- including the job hunt -- are not terribly interesting while also being often challenging. Images below can be more seen as a way that I fought the twin forces of ennui and despair.

 

Elegant roses (August 2023)

 

Fields Bridge Park in the sun (September).

An excellent sage of the skies at Forest Park (September). Sight seen with a cool companion that also appreciates the outdoors (and owls).

 

Shockingly slow sunflowers seen in September.

 

 

A taste of Fall settling in at Cook Park (early November).

 

A cherry blossom tree unveiling its plumage against many other trees (the month is obvious). 

 

One solitary maple tree unveiling autumnal awe. 

 

The most stylish llama in this corner of the world. Spotted at a Peruvian restaurant on my sister's birthday.

 

A lovely sunny day at Iron Mountain Park.

 

Our Thanksgiving meal consisted of a Burmese dish based on Khao Soi. This dish essentially consisted of a chicken curry, a coconut curry, and noodles -- we made the two curries separately over two hours before adding in the noodles. Add in some mashed potatoes and this was a great experience. 

My diplomat sister, on the cusp of starting a new post in a new country, came to visit us. There was an incredible itinerary to address that took us to many great sights and places. Essentially we spent much time together through the events of half of December and most of January. Warm in Hawaii, cold during the power outage, and investigating many great restaurants.  As it turns out, the universe had a hard time allowing her to leave. Her flight was delayed by a few hours and we hung out at Ikea before the true goodbyes happened. (The rest of the journey went off without a concern).

 

I enjoyed the Zoo Lights in December with my sisters + a family friend, her husband, and her baby.

 

After a slow start, Mt Hood started to pick up more snow. Caught on camera on Christmas Eve.

 

A New Year's Day jaunt at Silver Falls Park to bring in 2024.

 

Luxuriously expensive meal at Janken (January 2024).  Black truffle on sushi, gold plating in some meals, and other great twists on food.

My sisters and I went on a trip together -- perhaps our first full trip together without the parents involved somehow. We flew to the Big Island of Hawai'i and engaged ourselves in great exciting experiences -- to name just a few: seeing volcanoes, observing the wonderful wildlife, lying on beaches, and ziplining. The zipline experience ended up being swift and with ease outside of the seconds suspended in air over ravines and trees. On this journey, I even ate a wild banana (with permission).

Here are just a few grand scenes from this trip.

 

A photo from the holy volcano Mauna Kea at around 9000 feet -- my highest elevation so far.

 

Hawaiian Volcanoes Park was filled with incredible sights like this otherworldly steaming crater. Other sights including a lava tube, but also some gorgeous forests.

 

Two endangered tortoises majestically sun-tanning behind a rock barrier. 

A rain storm landed on Hawaii the day we flew back. This prepared us for the colder weather in Oregon. There were rumblings of perhaps record cold coming. Mere days after tropical weather we were plunged into -6 degree Fahrenheit windchill on the first day of a tremendous cold snap. The weather pelted us with snow and ice with intense possibly hurricane-force wind. This ice storm wreaked havoc on the whole metro area but my neighborhood struggled with downed trees. We were without power for a total of 50 hrs (not continuous fortunately) and had to dress up inside just to sleep.

 

Romantic salmon by candlelight. This image captures the experience of staying home without power during the winter.

 

Brown's Ferry Park on a bluebird sky day (February).

On the day before a fierce winter storm, my parents and I took advantage of clear temperaments in the sky. (There were snow drifts visible even on the day we went.) We went to the Gorge like usual but here I managed to climb up a few hundred feet to the bridge facing the Multnomah Falls. Typically I only see the Falls from the ground level yet today was different. We even used the scenic highway rather than the major road.

 

Multnomah Falls looking quite mighty from winter rainfall (February).

Ramadan, like last year, emerged unexpectedly -- with its first day landing on March 11th. The day after the switch to daylight savings. Once again, sleep shifted earlier for the pre-sunrise meal. Of course, this is an auspicious time to solidify one's mettle. To grow as a person. Clearly, a perfect time for writing a blog spot like this.

 

Snowshoeing by the White River on Mt. Hood (March 2024). The immense strenuous effort of this activity was exacerbated by the bright elevation and bizarrely toasty temperatures (above freezing) punishing jacket wearers.

To conclude this section, here are blooming cherry blossoms from March 20-22. An unusual stretch of warm weather prompted the trees to open up early. Right after, a stretch of rain -- complete with thunderstorms -- rustled these trees free of petals. I collected photos during the early stage of this rain just as the blossoms held high. (Indeed. The first photo in this blog post is also from this photo session.)

Forging a New Life Path
Job hunting and practicing driving have become an integral part of life. Leaving the PhD program constrained my energy and filled me with dread and guilt to work on being professional – on using time perfectly. Of course, the path still has not revealed itself. Seven months of job hunting and failing the driving exam twice (in December last year and in March this year) did not exactly provide the uplift I wanted. Still, in the midst of strife there is ambition – that is how I prepare a new trajectory.

To briefly recap the big event: I started a PhD in Ohio to study therapies for muscular dystrophy. Unfortunately, I was derailed and spent six rotations unsuccessfully trying to find one professor to take me in as a student.  I met with the graduate ombuds (the person that provides a neutral voice of advice) three times and the equity office four times (not including emails).  Even joined a support group for graduate students to dispel my frustration. Where this story picks up: a very tense situation dangerously near a May 8^th 2023 deadline to remain in the program. Everything hung in the balance with the bewildering dance of on-again/off-again.

How this went down:
Early April 2023 – Start the 7^th and final rotation. The last chance.
April 4^th – Submit my survey to the graduate school detailing my passion for research and the barriers in my way.
April 5^th – Speak with the graduate school dean – she agrees with my dad about developing a research plan, scope, and questions as a way to show interest for the PI.
Remainder of April – Provide research scope, research questions, a specific aims page, a career goals statement, and a biographical sketch to the PI in order to prepare a grant supplement for my PhD.

May 4^th – Get the good news from the program head that the professor wants to extend my rotation. May 8^th deadline cleared.
Remainder of May and June – In total, read 100 papers. Drafted an experimental methods (approach) section and shared with the professor.

July 19^th – Professor asks me to demonstrate bench techniques described in the grant. Finally, I am given permission to work hands on in the lab.
July 20^th through August 10^th – Performed three western blots (a key lab technique) to further the project.

August 8^th – The program head asks me for the professor’s cell phone number but is not able to reach him.
August 11^th – Program head emails me that he got a hold of the professor and that he would finally decide today. An hour later, the professor calls and tells me that I am not suited for his lab, ending my chances.
August 17^th – Program head and program coordinator meet with me to conclude my departure from the program. It felt good that the head said he enjoyed having me in the program and praised my perseverance.
August 18^th – Go to the lab one last time.

The threat of exodus remained on the horizon from April to August. When it finally dropped, that disrupted my sense of self confidence and forward movement. However, predictability did not ease the pain much – as all those meetings felt like they vanished in smoke. I had seen this professor come and go into the lab very haphazardly, as if he had forgone a need for a formal structure. Such a behavior only made the nerves worse. There was one day that I stayed home because of an extreme air quality alert (because of wildfire smoke drifting from Canada). Being outside gave me a headache within a few minutes. That was a rare day that the professor appeared, which underscores just how inconsistent his visits became during my time of crisis.

On August 11^th, two lab colleagues – my would-be fellow graduate students – got me cafeteria Indian food and lemonade from Panera. They calmed my nerves by talking me through the experience. Apparently, the professor demands results not training and is very strict about figures. Unfortunately, the university did not take much pity on me, forcing a move out that occurred on August 23^rd. Such a process was not unlike my exodus from Edmonton just without that pandemic part. The aforementioned lab colleagues were kind enough to transport me and my luggage to the airport. My return trip (flight and all) to Oregon was surprisingly smooth outside of a few avoidable hiccups.

My chaotic experiences were underpinned by possible discrimination because of my muscle condition. Though I had mentioned this in conversations, I advanced my concerns to the university proper by working with the equity office. By working with the office, I helped guide a conversation with my former Ph.D. program about ableism. The impacts are far from clear here – yet going through this process helped me appreciate that barriers can fall eventually.

I thought I was not that attached to being in Ohio. However, over two years, I had gotten fairly used to my surroundings, including picking preferred restaurants and going to the local independent theater. Going to see the New Pornographers in a local concert venue near me. Eating at a pretty good Mediterranean restaurant with two friends from my old program just before leaving. All that investment trampled and squashed by a situation eager to be rid of me. Even now, this is painful to remember.  

State of my Well-Being
Over the past year, I found a way to keep supporting  medical science despite being torn between two places as described here:  http://nighttrail.blogspot.com/2023/12/out-of-body-into-mind-updates-on-being.html. Though the removal of a ‘penny’ of muscle was…weird…I felt like I was truly helping people.

As a 30 year old, I am now aware of changes in my body – hard to believe, but it’s true. 2023 marked my return to healthcare in only one state. This required many phone calls between both health insurance plans and making sure the Ohio one was removed for all doctors. I started working with a new neurologist, which led me to the usual breathing tests (every two years). However, this time they uncovered a mild asthma – not the news I expected! On the other hand, my cardiologist revealed that everything internally was up to code. Working with a counselor regularly again brought me some emotional stability. Some other strange things hinted at my getting older: getting a skin tag removed and a small cyst surgically excavated in the same summer. (For some reason, this is the part that sticks out as unusual to me.)  

The fun does not end there. My eye doctor had the gall to cancel my appointments twice in a row over two months and then notify his patients about his retirement. Feeling annoyed, I switched doctors at the same place and was astonished by the massive improvement. That leaves just one last anecdote: changing physical therapists for the first time since the lockdown-ish part of the pandemic. Even with my body continuing to age, I dare say my lifetime with a chronic condition has prepared me well. From encounters comes new perspectives and I welcome the challenge (at least when it comes to my health).

Advocating for a Better Future
Putting your energy and soul into building a better world is time-consuming and tough. Lately, I have felt self-absorbed and disconnected (though not entirely by choice). In spite of that self-directed anguish, there has been some progress to report. In April of 2023, I remotely participated in the ACLU of Oregon lobby day (from Ohio) and advocated in favor of critical legislation on topics such as reproductive freedom. Furthermore, I kept attending the MDA Advocacy Institutes and even got to participate in a focus group with them in February of this year. With luck, my life situation stabilizes and I can redouble efforts to support my communities.

Toastmasters-ing
The following words will be more boastful than one would expect from me. A rare area that has felt exhilarating and eventful. A review of my current notebook – and the one before it – reminded me of just how much I accomplished. With the Canadian group, I went ahead with planning a collaborative meeting, despite the Damocles’ sword falling on my head in August. What an exciting way to start my time as a president.

Zoom participation really preserved my ability to continue doing a beloved hobby (see the subsection title). In May of 2023, I became the President of my Oregon Toastmasters group despite trying to pursue a Ph.D. and turning 30. Shortly after, I finished my Presentation Mastery path, marking another two years working on speeches and other projects. During this past year, I also spent some time with my Canadian group over Zoom and also electronically visited another Oregon group.  All in all, a good Toastmasters year – perhaps aided by the disastrous exit from Ohio.

That was not all. I also 1) led a roundtable discussion about the club (June ’23); 2) managed our preparation of the Club Success Plan (Feb-March ’24); 3) presenting the Moments of Truth to learn more about my club’s progress (March ’24); and 4) hosting three officers’ meetings about the club’s direction. Some bureaucracy cropped up too like the Annual Business meeting (just after my PhD plans collapsed), the District business meeting, and the biannual leadership training. That last training had a speaker talk about “Barriers to Toastmasters Joy,” which was a great way to encapsulate the ways that we stop ourselves from greatness. In this small arena of Toastmasters, my mark has been placed, which makes me feel some amount of pride. 

 
Media Exploration
Despite – or perhaps directly due to – life’s recent turbulences, I found myself drawn towards media in my spare time. Media played this great role in keeping my nerves from fraying.

One highlight is reading four Agatha Christie books injecting me with the thrill of mystery and excitement in life. For example, my experience with Elephants can Remember (http://nighttrail.blogspot.com/2024/03/resurrecting-past-review-of-elephants.html) demonstrates this appeal. With these guides for a detective’s look at life, I found myself wanting more and started the famous mystery visual novel Umineko. I sharpened my imagination further watching  most of the Twilight Zone (1959) (especially thanks to one particular friend). Upon first glance, this is scarcely massive. TZ is a famous series yet the first and foremost challenge is simply the black and white look and era-specific approach to story craft. Once past that, I found myself eager to keep watching and immerse myself in the surreal. Many series owe it to TZ intentionally or not and some of my favorites (like Jordan Peele’s 2019 film Us) are drawn straight from this well. Lastly, a shout-out to honor some other media recently engaged: watching all of Idolish7 (appeasing a separate friend), rewatching Hyouka (yet another tie-in to my love of mystery), and even seeing The Goonies and Whisper of the Heart during special theatrical re-releases.  

Art served as another lifeline. Going to the maker space in a certain library with my parents made all the difference of making many more works than before. Admittedly, my switch from oil and canvas (in days of old) to fast-drying paint and paper.  Last year, I put together a recap of images (http://nighttrail.blogspot.com/2023/12/pictorial-entries-from-overdue-return.html). Since then, I have slowed down my rate.

Below is a picture of Mt Hood I made largely in watercolor with acrylic paint mixed in. I got the idea from separate photos of Mt Hood -- one of the pinkish alpine glow and another where the mountaing had a lenticular cloud cap. Though the proportions are clearly off, I liked this painting.

A childhood hobby of mine clawed its way back this past year – that is playing videogames.  Somehow, I lapsed into mostly watching videos of people playing games, thinking I had no time for them. Breaking this line of thought honestly put me in a better place, especially with my PhD situation crumbling away unexpectedly. As a semi-active hobby, it forces me to respond to novel situations. Before now, my habit was to replay Fire Emblem, or perhaps little pieces of other games. This time, however, I went in and completed some big-ticket items on my backlog. Some of these games I played briefly in high school or college, and never returned to.

Playing Super Metroid, Bastion, Super Mario RPG, and Resident Evil 1 (Remake) among others helped me feel satisfied again with my gaming. All of these games are distinct in playthrough – but all provided a challenge to continue until the end. The Zero Escape series was especially challenging: having to solve obscure escape room puzzles and ponder about human consciousness. Perhaps life’s recent turbulences fostered my mood for self-created challenges, making room for this hobby once more.

Super Metroid -- which started me on this trend -- has been sitting on my game console (virtually) since probably high school. I played 5 minutes back then and stopped. Coming back and finishing the game on our TV no less was thrilling. Especially this ending shot below.

 

Reflection Recap
Life works with its humorous rhythm. The past year has been disruptive when it comes to answering “what are you doing these days?” Seems like honesty is going over okay tough. Oh how I long for a true sense of stability that underpins my whole life. The fact that my health remains good cannot be taken for granted but I yearn for something more. With luck and determination, there will soon be a big break in the clouds hovering over my head. I await prosperous times ahead.

As always, thank you for reading!