FIELD Outlook: Dr Kelsey Byers
Disabled in the field: navigating nature as a disabled biologist
What comes to mind when you picture a field biologist?
Chances are, you’re picturing someone dressed in field clothes, covered in mud and mosquito bites, hiking through tricky terrain — mountains, canyons, rainforest — and hauling a load of field equipment off to some remote site. We’ve all seen the advertisements for field interns— “can be physically strenuous” or “involves walking up to 16km per day”. Yet we also love fieldwork — it’s a chance to be outside, to see our study organisms in the wild and learn from them in situ, to truly feel a part of the natural world. Isn’t that why we became biologists?
The question, though, is – what do you do when you can’t do “physically strenuous” fieldwork? Or you can’t walk “up to 16km per day” — or even at all? What if you can’t see well enough to follow the path, or hear well enough to understand your colleague’s warning about an angry bear? What if you have too much fatigue or pain to imagine yourself as that field biologist hauling equipment and hiking through tricky terrain? What if your brain operates differently than other field biologists’ brains, making it hard for you to stay organized or focused or calm and mentally well in a fieldwork environment that’s full of distractions and stress and often a lack of sleep? What if you can’t drive easily or at all due to a chronic medical condition? What if the program refuses to accept you and provide reasonable accommodations for your disability because of risk or liability, or just plain thinks you can’t “hack it” and do the work, even if you think you’re up for it?
Do you give up your dreams?
I met a senior entomologist once at a major conference. He was in his manual wheelchair; I in my mobility scooter (I use a wheelchair nowadays). As “wheelies” often do, we stopped to compare our equipment, and got to chatting about fieldwork. I explained that I use crutches or hiking sticks to move around my field sites and spend a lot of time sitting on the ground to decrease my risk of fainting. He told me about his wheelchair attachment that turns his chair into a trike, letting him go over rougher terrain to collect insects. We laughed about stories of going out in the field, chasing recalcitrant insects (and interns!), dodging cattle and thorns and mosquitoes, working in teams, good days and bad ones — the same stories that anyone with fieldwork experience laughs about after it’s over. So why were we any different?
Any old hand at fieldwork can tell you — every fieldwork site and trip is unique, battle plans rarely survive the first charge of the enemy, et cetera, et cetera. And any disabled or chronically ill or Deaf person can tell you — our bodies and brains are unique, situations are fluid, and we are used to coping with this already. So you might argue that in fact we are the best people for fieldwork — we are used to coping with things not going right, situations being other than we were promised, performing well with limited resources, knowing our limits, adapting on the fly.
Yet we are rarely given the chance. “It’s too risky”, they say, without thinking about whether we are actually at risk, or whether we accept those risks. “It’s too expensive”, they say, forgetting that most disability accommodations are cheap to free. “We might get sued”, they say, forgetting that denying us time in the field like abled students and staff get is actually more likely to be a lawsuit-generating exercise (if we even have the energy and money for it). “You’ll be a burden”, they say, without even asking us if we can hack it. “It’s too hard”, they say, without even asking us what our limits are, what we can and can’t do, and telling us they know more about our brains and bodies than we do. It’s infuriating.
I once sought disability accommodations for teaching while in my PhD in the USA. It was a disaster. “Don’t register with us”, the office said, “we might have to decide you can’t teach a certain class if we think it’s unsafe for you or that you aren’t suited for it.” Aren’t I the one that gets to decide that? Aren’t I the subject matter expert on my own body and brain? “You’re better off asking for unofficial accommodations when you teach”, they said, violating the letter and spirit of disability laws in the US. Never mind that I could have walked with ornithology students through the field birding — something I already did anyway, and something I even did as one of those students (my disability is much worse when standing still than walking) – but that my greatest problem teaching was that same standing still for hours teaching an indoor freshman lab course with a dislocated ankle.
My field sites in the Swiss and Italian Alps can be reached by car or by a combination of trains, buses, and cable cars or ski lifts —F no need to drive if you can’t or don’t feel up for it. Step out of the car or off the ski lift, grab out your mobility device if you need it, trek across the meadow or down the dirt road and start to do the day’s work. Subdivide the work so that the person who needs to sit a lot is setting up the floral scent collection pumps while the more abled members are scrambling across the meadow setting up the bags to enclose each flower. Take a break midmorning for a snack — everyone needs the break, not just me — and maybe a short nap in the sun to fight off the narcolepsy. My field site isn’t wheelchair accessible with my current wheelchair, but there are chairs and attachments out there that would do the trick. Most importantly, though, is the attitude of those around me now – when I say I can do it, they trust me. When I say I need help, or a break, or am feeling bad, they listen.
One day, during my first postdoc, I staggered back to the car after a hike down from a field site. My blood pressure and cerebral perfusion were shot; I could barely speak due to a lack of blood flow in my brain, my gait was staggering, my thoughts incoherent. Fortunately I wasn’t the one driving. Unfortunately my emergency sugar stash (peanut M&Ms — crucial when I’m in this condition) had been raided by the PhD student who was unaware of their emergency necessity, and there were none left. Fortunately the ride back to the place we were staying was only an hour and I was able to lie down in the back seat of the Land Rover. Unfortunately I needed to be coherent at check-in.
That was when, after being gently scolded by the PhD student about not communicating my needs — and not telling him that the M&Ms were important — we came up with the “emergency instructions” sheet that now goes to every member of my lab. It covers things like how to tell if I’m feeling poorly and can’t communicate it; how to communicate if I’m nonverbal; what to do if various symptoms show up; how long it takes for me to recover; and when to — and not to — call emergency services. Lab members tell me this gives them more confidence in knowing how to deal if I’m poorly and can’t instruct them, and I feel more confident too knowing that someone knows what to do in an emergency. It’s a simple thing we can do so that both of us feel more confident in the field. After I introduced the emergency instructions sheet, the PhD student and our other field assistant started checking in more often to see if I needed a break, and started instituting those breaks more often. It turns out if you never tell people what you need and how to spot a problem, they’ll never know. Yet sometimes, out of fear (what if they kick me out?), out of pride (who doesn’t want to be as independent as possible?), and out of shame (what if I’m the reason the fieldwork fails?), we don’t communicate those needs, and that’s on us to fix. But, at the same time, the people we work with need to be receptive to that communication, and they need to trust us and listen to us when we say what we need.
The most important elements are trust and listening. Trust that the person with the health conditions or disabilities knows their body and brain best. Trust that they know their limits, even if those limits are “soft” and not “hard” ones, even if they change day by day. Trust that if they say they can — or if they say they can’t — that they are telling the truth as best they know. And listen. Your quick Wikipedia search might give you the basics on my health condition, but it doesn’t tell you anything about how it affects me in particular, how I need and like to be treated, what my doctor has told me. Most of all, it tells you nothing about my lived experience. I am the expert on my brain and body and that deserves respect.
One day in Panamá the group was heading out to the rainforest to collect more butterflies to replenish our captive breeding stocks. While I’d been hiking down the road we used to access the collection sites in the rainforest, I’d never gone as far as was planned. Once the truck was parked, it would be another hour of hiking to get to the collection site, and then another hour to get back to the truck.
“Stay home, take care of the colony” I was told. “We’ll go out early, and you won’t be able to do the hike.”You’ll be in the way. You’ll be a burden. You’ll fail, and so we’ll fail, the unspoken subtext came to me.
“But… but I want to do fieldwork. I’ve never seen these butterflies in the wild and I want to see them in situ, see how they find food plants.”
“You won’t be able to help.”
I insisted. Surely we could come up with some way for me to help, some way for me to be in the field and experience the butterflies in the rainforest, learn from them in their natural habitat.
“Fine. We’ll drop you off along the way by the river. Bring everything you need for several hours because we’ll keep going, we’ll be back to get you on the way home.”It turns out there’s no need to chase these butterflies — they come as trapline foragers to the food plants and you can net them right there. I spent four lovely hours along the road and river in the rainforest, watching Red-capped Manakins do their “moonwalk” courtship dances and being buzzed by beautiful iridescent green Ornidia syrphid flies and scaring Great Tinamous stalking across the road. Along the way I also caught two female butterflies, pushing through the brush only a meter off the road to net them when they fed on the Psychotria bushes. Some hours later the rest of the group came back.
They were covered in chigger and mosquito bites.
They had caught one female butterfly to my two.
I resisted the urge to remind them how they tried to leave me behind, simply because of their assumptions about my body and my disabilities. It wasn’t the first time and it won’t be the last. And that — that needs to change.