Originally published here.
Between 15% and 25% of the world’s population lives with one or more forms of disability. Despite some progress on disability rights, for many disabled scientists academic-research spaces and career pathways remain out of reach, both literally and figuratively.
Many nations legally require institutions to make ‘reasonable accommodations’ to ensure accessibility, but disabled researchers think that a corresponding shift in the attitudes of many co-workers is needed.
They say that ableism — beliefs or practices that devalue and discriminate against people with disabilities (whether physical conditions, mental-health issues, chronic illnesses or cognitive differences) — has excluded them from classrooms, laboratories, fieldwork and conferences. Not only are disabled researchers under-represented in science, technology, engineering and mathematics (STEM) fields, but both visible and invisible disabilities are often missing from discussions of diversity and inclusion, they say.
“If we designed physical spaces and classes in a way that suits the common denominator of humans — such as always having a ramp, always teaching in ways that are inclusive of neurodiversity — then we make the system work for everyone,” says Kelsey Byers, an evolutionary chemical ecologist at the John Innes Centre in Norwich, UK.
At the same time, many disabled scientists point out that the COVID-19 pandemic has eased access, thanks to virtual conferences, remote working, and telehealth appointments — and they fervently hope these options will remain available after the pandemic.
To mark National Disability Employment Awareness Month in the United States (October; a similar UK event, Disability History Month, runs from 18 November to 18 December), four academics with disabilities share tips for coping with daily professional challenges, when to seek resources and support, and how to let colleagues know the best ways to help.
KELSEY BYERS: Contributing science while sitting on my backside
Evolutionary chemical ecologist who studies the evolution of floral scent at the John Innes Centre in Norwich, UK.
I started having problems with my joints in 1998, when I was 13. But it took until 2009, when I was in graduate school, for me to be diagnosed with Ehlers–Danlos syndromes. I also developed postural orthostatic tachycardia syndrome, which meant that I couldn’t lift heavy objects or stand for long periods of time.
What worked for me was being really open with my graduate advisers, who made informal accommodations for me. For example, I designed the layout for our experimental array of monkey flower (Mimulus) plants, and the rest of the team carried them out to be planted at the field site.
A lot of the how and when of disclosure is based on trust. I had already built a good personal relationship with my PhD adviser by the time I was diagnosed. In that lab, naps on the couch were normal; everyone took them. So although I would sometimes have to lie down to work or attend a lab meeting, it wasn’t considered weird behaviour.
My biggest barrier is other people’s assumptions about what I can and can’t do. While I was doing postdoctoral fieldwork in Panama, our team needed to collect female butterflies from the rainforest. There was some scepticism about my taking part, because I wouldn’t be able to hike. I convinced them to drop me off by a river with a stool and some nets, and I parked myself by plants that I knew the butterflies like. I caught two females. The hikers caught only one — and were bitten by chigger mites and mosquitos. It was a great moment to flip life a middle finger.
It was important that I was able to do my share even while sitting on my arse. Just because I’m disabled doesn’t mean I can’t contribute very positively to our results: I can drive to a lot of field sites, I can process samples while sitting and there are adaptive wheelchairs for fieldwork. And I give my team a set of instructions in case of any medical trouble in the field.
As a scientist, your job is to think. Hiring someone else to be the hands, ears, or eyes is a totally reasonable accommodation — and legally should be treated as such — where the financial resources exist to do so.
When I was doing a postdoc at the University of Cambridge, UK, the old buildings were sometimes inaccessible. I had to go through one particularly heavy door to get to the toilet, the tea room or lab meetings. It was exhausting and it wore me down.
At teatime, my colleagues would leave me at the elevator while they took the stairs, even if we were mid-conversation. That was emotionally painful. My colleagues didn’t have bad intentions, they just didn’t think.
I used a mobility scooter when I was interviewed for my current position. The director of the institute asked me about going through a difficult door, watched me do it and then took it on himself to talk to facilities management to fix it. He identified a problem and didn’t act on my behalf without first checking with me. That was huge.
Often, the student and the staff disability offices on campuses are focused on documentation. In my opinion, these “gatekeeping offices” are set up so that universities can avoid liability. In one instance, my privacy was violated when my condition was disclosed without my consent. So many universities treat their official, restrictive processes as the only way to make provision for people with disabilities. That is a real problem.
Finally, I identify as asexual and agender. At conferences there might be an LGBT+ evening meet-up for people from sexual and gender minorities, but the space won’t always be accessible. Intersectionality — how different aspects of an individual’s identity can combine and intersect in life in both positive and negative ways — is key when pinpointing and addressing challenges.
You can read the complete article here.