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Drone credit: Sam Chester, 2022 student & 2025 teaching faculty
Thanks for letting me take over your feed for the week! I’ve saved my best picture for last: a Polaroid taken by @thatkaufmannkid of me gremlin-hunched over my pb&j tortilla wrap at the base of Shoehorn on the Taku. It’s astounding how good any combination of food tastes in the field
What I hope you take away from this is a more nuanced understanding of what disability can be. I don’t look disabled. In fact, I work really hard to mask my struggles from the outside world. You might see me doing crazy adventures outside. What you don’t see is the days I have to spend in bed afterwards recovering. Again, I’m not an inspiration. I’m just a regular person learning how to work within a world that is not designed for me to succeed. Rather than focusing on inspiration, we should instead focus on changing the world so that completing every day tasks does not necessitate Herculean effort from marginalized groups
All disabilities are unique and require individual consideration on whether or not JIRP is the right fit. Students must be cleared by the JIRP medical team before the field season. Please reach out to JIRP directly if you have any specific questions about medical concerns, they’re more than willing to have an open conversation!
A few cool things I’ll leave you with:
-Check out The North Face’s new universal line! Who here hasn’t struggled with the sleeping bag zipper getting stuck every 2 inches or trying to open a backpack with one hand occupied by snacks? Universal design and accessibility benefit everyone
-Watch para sports! A few of my personal favorites: paranordic and parabiathlon, sled hockey, wheelchair rugby, and paraclimbing which is making its Paralympic debut in LA28!
-Disability is not a bogeyman or a taboo topic. We’re human and we just want to be treated as such
-Seek out new perspectives online, educate yourself, and advocate for the spaces you’re in to become more accessible. A few excellent content creators to follow: @chuckaoki@culxtured@worldclimbingpara@adaptiveclimbersfest (and the Right to Risk film premiering at this year’s Telluride film fest), @scottandshayna@sistersinsports@declan_farmer and many many others!
JIRP as a disabled scientist taught me several very important lessons:
Communication is key. You aren’t alone and you don’t have to face these things alone. You deserve the help that you need. Other people can’t help lessen your burden if they don’t know it exists.
Advocacy. I learned at JIRP how to say “this is what I need to succeed.” This included telling my team what my brain was doing, even if I didn’t have the full knowledge to properly explain it at the time, and requesting I set the pace. The disability community is the only marginalized group that anyone can join at any time. It takes a lot of work to break down the internal barriers to ask for help. Post-JIRP, I have learned to stop being so stubborn about asking for accommodations. Just because I can tough it out, doesn’t mean I don’t regret it the next day. It’s super easy to request a stool for your poster at AGU
Adaptation. We already use tools to make the traverse easier for us. Trekking poles are a mobility aid. I have found many creative ways to adapt my gear and surroundings to my benefit. It is not shameful to need extra tools (hello internalized ableism). The only thing that matters is that it makes life easier for you.
Self-awareness. I have become very in tune with the needs of my brain and body, and have learned how to communicate especially with my brain. While doing physical activities, the largest source of struggle is always my brain, and I have to keep it on a tight leash. This inner awareness of the workings of my own brain has been fascinating to experience. Rather than battling against my brain like I had to on JIRP, I now work with it while maintaining some firm boundaries. Also, Lizard Brain is very easy to bribe with Nerds Gummy Clusters.
If I could tell my prior self anything before going up on the icefield, it would be this: We all have unique strengths that we bring to the table. Find your niche, it definitely exists. And stop comparing yourself to others *readies spray bottle*
P1: giant moulin
P2-3: resilient icefield plants
P4: burn camp ride north
P5: adapting to keys locked inside our van
P6: cloud shadows over the Taku
P7: stop comparing yourself to others
I like to call this picture “moments before disaster”
This picture was taken the morning of our traverse from C10 to C18. When I woke up that morning, Lenny the Lizard was already bouncing off the walls inside my head. Another fun fact I learned at JIRP is that meds like SSRIs start metabolizing much faster when you’re doing so much intense activity. I was starting each day at a much higher baseline anxiety than I was used to, which only compounded my fight with Lenny. I think you can see from my “smile” how I was really feeling lol
Part of my crash out on this traverse was a result of my own stubbornness. We were going at a pace that was unsustainable for me, and I gritted my teeth and tried to keep up because I was too stubborn to be the one slowing down the group. I learned my lesson after this traverse and insisted on being the one setting the pace for the group because I knew I would be the slowest person so any pace I set would be comfortable for everyone
Keeping up the unsustainable pace meant that my heart rate was really going up, and Lenny kept pressing the PANIC button. The large pit of anxiety in my chest swelled. The only words I could think of in my head were of a coach telling me when I left a team that I was “not cut out to be an athlete.” Some words, as the kids would say, live rent free in your head, even 8 years later
The main thing I learned during this traverse was how important communication and self advocacy are. The only reason I made it was because my team was there for me every step of the way, and my team only knew that I needed their help because I asked for it. And one of the reasons my anxiety reached a critical state in the first place was because I did not communicate that the pace was unsustainable for me
One of my most distinct memories from that traverse was when we reached C18. As I sat exhausted on the floor, @chrischtlstahl and @cal3z came running in and hugged me, celebrating with me over how hard I fought to get through the traverse. I was the slowest person up there, and still was worthy of celebration. It shifted my perspective from comparing myself to everyone to appreciating just how hard I could fight
Fight or Flight. I’d like to introduce you to part of me I didn’t know existed prior to JIRP: Lenny the Lizard.
An incredibly common comorbidity of hEDS is dysautonomia, aka dysfunction of the autonomic nervous system (the part that does things automatically like breathing or your heart rate). POTS and long covid are other forms of dysautonomia. I have the flavor of dysautonomia where my Fight or Flight response is always primed to dump adrenaline into my system. I call this part of my nervous system Lizard Brain who I imagine as a hyperactive bearded dragon named Lenny. Lenny is very very talented at pressing the big shiny red button in my brain labeled THREAT. Lenny is a little less talented at discerning what actual threats are. For example, Lenny thinks that an increased heart rate is BIG THREAT. Which is a bit of a problem when lots of things increase your heart rate, like standing up from a chair, or skiing 18 miles.
During JIRP, I was unaware of Lenny’s zealous button-pressing. What I was aware of was the growing pit of anxiety in my chest and the racing thoughts that I couldn’t reign in and spiraled out of control. On pre-JIRP outdoor adventures, I managed my anxiety by taking short 10 second breaks every 15 or so minutes, just enough time to snap a picture of a pretty flower or take a sip of water. Even a 10 second respite from the increased heart rate was enough to stop the growth of that pit in my chest. The challenge I faced at JIRP was that the method that worked for Lenny does not work in a group setting. We could not stop for 10 seconds every 15 minutes because 10 seconds would turn into 5 minutes, and that adds up very quickly. Any traverse became a mental battle for me in addition to a physical one, except I was only fighting myself, and losing pretty badly at that.
Splitting my nervous system from myself in the form of Lenny helps me reduce the blame I place on myself. Lenny is something I cannot control. I have to learn how to work with him so that we both can get to the top of the mountain. Sometimes, I have to walk Lenny through the perceived threat. Sometimes, Lenny just wants a gummy worm. 🦎
My favorite parts of JIRP:
Many of these have already been mentioned by previous takeovers, but it is worth mentioning again. Despite the amount I struggled on the traverse, it was so, so worth it. I want to make sure I emphasize just how awesome JIRP is.
📸1-3: The people. I would not have been able to do it without the people. This was especially important when I struggled. To the people that hung with me in the back of the pack hyping me up, the ones that force fed me instant mashed potatoes when I was crying in my sleeping bag, the ones that celebrated with me when I finished traverses, thank you. The bonds forged up there are indescribable. Special shoutout to @marika.m.b for the Bernie Sanders jirpmas present
📸4-6: The history. Looking up at the rafters of every camp, I truly felt like I was part of something much larger than myself. I could see the names of friends, of future colleagues, of the people that wrote the literal textbooks on glaciology. The larger JIRP community is huge and welcoming. Even walking around at AGU with the JIRP badge on my name tag, I meet so many people through random interactions initiated by the mutual JIRP connection
📸7-9: The views!!!! Especially the outhouse views. Damn is it pretty up there
📸10-12: The science. I had so much fun getting to apply science to a real system, and watch the results pop out in front of my eyes. When we plotted the GPS measurements along Profile 4 in the Taku, we saw a textbook ice velocity curve. Skiing across flow, we saw the crevasses change orientation based on the stress fields induced by lateral friction. Science is so cool!!! It was empowering to be able to collect data and process it in real time in the field
📸13-16: Mass balance pits. I really didn’t think I was going to like digging pits, but it actually aligned perfectly with what my brain needed. Periods of 2-3 minutes of exertion followed by a 10 second break. Brain turned off, shovel turned on, and suddenly, big hole
📸16-20: Art. There’s nothing better than skiing 10 miles and then getting to do watercolors on a nunatak while taking in the views. I kept every bit of art I made up there and proudly display it on my walls
Things that impacted me on the icefield
Part 2: skin
🦶Blisters: I blister incredibly easily, and my blisters get big fast because my skin is stretchy. I’ve never been able to form calluses, they just rip off. My feet were constantly blistered the entire traverse
🤧Allergies: because I taped my feet so much at JIRP to prevent blisters, I actually developed an allergy to adhesives that I still have today. Adhesive allergy is pretty common in EDS, I just managed to exposure therapy myself into it 😎
🌈Bruising: I bruise incredibly easily. Even bushwhacking leaves my legs polka-dotted with rainbows. Thankfully the bruises aren’t painful but it’s awkward constantly explaining to doctors that yes everything is ok at home, I just went skiing yesterday
Part 3: autonomic nervous system dysfunction
(The autonomic nervous system is the branch of your central nervous system that controls things like heart rate, breathing, blood pressure, etc) 🫀Slow Recovery: after doing intense exercise, my resting heart rate can be elevated by 20ish bpm for up to 48 hours after stopping. I need to aggressively rest and recover after doing big things. I’m good at hiding this from people. You might see me post pictures of all my outdoor adventures. What you don’t see is the several days I need to spend in bed afterwards to get back to baseline
🧠Fight or Flight Response: my body is really good at going into fight or flight mode. I’m pretty much constantly getting adrenaline dumps and low heart rate variability. On the icefield, this manifested primarily in the form of anxiety. As soon as my heart rate went up, body went into flight mode and my anxiety swelled. Whenever I’m doing physical activity, instead of feeling hunger, thirst, need to pee, etc I just feel anxious. Outdoor adventures have become a guessing game trying to figure out what the anxiety means this time
🥵Temperature Regulation: very bad at it, I sweat a lot and overheat easily. One benefit of this: my doctors encourage me to eat more salt. Everything tastes better with more salt. Yes I do sometimes eat plain salt
Fatigue: constant heart rate elevation and lack of recovery means I fatigue hard and fast
What is Ehlers-Danlos Syndrome and how does it impact field work?
Ehlers-Danlos Syndrome is a family of genetic connective tissue disorders. I have the hypermobile subtype (see pic 4), the most common form of EDS. Many subtypes have a known genetic mutation that can be conclusively diagnosed via a genetic test. Hypermobile EDS, or hEDS for short, has no known genetic marker as of right now, making diagnosis difficult (esp for AFAB folks)
EDS affects collagen, one of the fundamental building blocks of the tissues in our bodies. The impacts of faulty connective tissues are widespread and look different on every person. Many of my symptoms are not intense enough to need immediate attention, and I’m too stubborn for my own good and power through them, not wanting to bother doctors with “minor” issues that I can fix with ibuprofen and duct tape.
Things that specifically impacted my time on the icefield
Part 1: spooky scary musculoskeletal issues send shivers down your scoliosed spine
💪Shoulders: did you know your shoulders aren’t supposed to pop out occasionally? I didn’t! In my defense, I thought they were popping like how your neck cracks when you stretch it really good. Subluxing (partial joint dislocation) wasn’t in my vocabulary yet and it didn’t really hurt so I didn’t realize it was that bad. I popped a shoulder out slipping on mud up blackerby ridge (pic 2). Thankfully my shoulders stayed in the rest of the traverse
🦵Knees: due to muscle imbalances in my legs, my IT band is incredibly tight in an attempt to stabilize the knee. This yoinks my kneecap off the proper tracking, and I have developed osteoarthritis. In the words of a previous PT: “oh god, why is it so crunchy?” Every large step up or down is painful for me, but my pain tolerance is pretty high
😵💫Poor Proprioception: my body doesn’t fully grasp where my limbs exist in space. This is extra fun in whiteouts (pic 3). If I wasn’t looking straight down at my skis, I would lose my balance. In day to day life, I’m generally pretty clumsy and bump into things a lot, or sprain my ankles from stepping wrong and suddenly they decide not to ankle anymore
Parts 2 and 3 coming soon!
Please don’t hesitate to ask any questions in comments or DMs! I promise I only bite on Tuesdays 😉
When I applied to JIRP, I was already well acquainted with glaciology. I attended Wellesley College for undergrad and worked as a research assistant with Dr. Brent Minchew at MIT since early 2020. My undergrad research was about crevasse mechanics and the tensile strength of ice, and I was stoked to get out there and see some real crevasses under my feet. It really puts your research into perspective when you can rappel inside the thing that you study (pic 3&4). I participated in JIRP before my last semester of undergrad, went on to finish a Masters at MIT, and I’m currently a first year PhD student at UChicago working with Dr. Meghana Ranganathan, still studying ice damage mechanics.
My favorite part of JIRP was working hands-on with faculty to collect data in block 3. I got to work on the interferometry team led by Dr. Ryan Cassotto, where we collected ice velocity maps of the Gilkey Glacier (pic 2). Plus we got to hang out at camp all day, which is exactly what I needed physically at that point in the expedition. As much as I loved exploring new places on the icefield, it was really nice having the option to hang back at camp and still get to do something fun and interesting. I was always worried I was missing out when I needed to stay back at camp, but I’m really glad I had the opportunity to engage meaningfully in research while also being able to rest to preserve my physical and mental health.
I’ll be returning to this outhouse poem (pic 1) a lot. It really carried me through the traverse. I’m good at being hard on myself ❤️🩹
When I returned to normal life after JIRP, I experienced a lot of grief over the “what if’s” and potential missed opportunities because I was not able to leave camp every day. Receiving my EDS diagnosis was actually a source of relief, because it helped me to contextualize the struggles I faced and give myself permission to release the guilt I felt over not doing enough. Grief faded as I realized I could not compare myself to others because I was starting in such a fundamentally different place. I’m proud of what I accomplished.
Hi y’all! I’m Sarah and I’ll be your captain for this week’s takeover. This week, I’ll be focusing my posts around the theme of Disability and Field Work
As per usual, please keep your hands and feet inside the ride at all times, there are four emergency exits over the wings, etc etc
I was a student at JIRP in 2022. In 2024, I was diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder that systemically impacts every part of my body. EDS is an invisible disability. So invisible that I didn’t even realize I had it while I was up on the icefield! As it turns out, a lot of things that I thought *everyone* struggled with were not, in fact, “normal” lol. Some of the struggles I experienced during JIRP started my path towards a diagnosis, exposing patterns that were evident in retrospect but took being in such a new environment to really bring to the forefront.
Since participating in JIRP, I have continued to do wild things outside with friends or even on my own, just with a better understanding of how to work with my body rather than against it. I found a community in Adaptive Climbing Group in Chicago and at Adaptive Climbers Fest (pic 5). Being in community is a powerful feeling. Plus, being driven to the crag absolutely rocks 😜
Before I share my icefield story, I want to preface this week with a couple disclaimers:
1) My story is not meant to be inspirational. Too often, when a person with a disability shares any accomplishment, the default response is “wow, you’re so inspirational!” This objectifies people with disabilities and relies on the assumption that disability is inherently tragic. My goal is to provide an honest account of my time on the icefield to help broaden awareness of what disability looks like
2) These are my own personal experiences and do not encapsulate the wide range of ways that people experience EDS or disability in general. I am only able to speak for myself. The best way to learn about the broad spectrum of disability is to seek out content on disabled experiences!
Each photo has alt text on it. Try using the accessibility settings on your phone to have a screen reader read them out!
