My disabilities

Disabled people in academia usually hide or mask our disabilities, if we can. The reason is ableism: people at university tend to be judged harshly if we show any form of perceived weakness. Colleagues and students routinely assume that if we have a physical or emotional disability or illness, we must somehow be less able as intellectuals. This kind of inference is wrong on many levels, and deserves to be consistently challenged. Disabled and sick people are legitimate and valuable and productive members of society and of universities.

Generally, disabled and sick people should not have to disclose details of our medical status in order to be afforded accommodations when requested for legitimate medical reasons. Especially when our disabilities are invisible, abled people are often suspicious of accommodation requests, believing that there is a much larger pool of fakers than actually exists. They want evidence to convince them that (for example) someone is not asking for a nicer chair at a workshop because they are a prima donna expecting luxury but rather they physically need it. Providing the desired kind of evidence to the abled people demanding it is generally difficult or impossible without disclosing disability details. This the well-known disclosure problem.

Even after I have told them, lots of people later forget that I am disabled. Partly this might be attributed to general academic absent-mindedness, and/or the lack of good places to store this kind of information in university information systems. But another significant factor is the desire among abled people to not have to think about uncomfortable issues like exclusionary accessibility barriers in university environments. Event organizers vary in their responsiveness to accommodation requests -- in the past five years I have experienced everything from complete and willing provision all the way to refusal to even answer my emails requesting accommodations in the hope that I would just go away and stop asking!

It takes a lot of work to start from scratch and explain anew to event organizers -- or more usually the staff who handle details of accessibility requests -- why I need certain accommodations. Over the years I have grown very tired of the repetitive and sometimes demeaning nature of these conversations. Now that I have tenure, I just send a web link to clear instructions online. My hope is that the risk I take in disclosing is worthwhile overall, especially if undergraduates and early career researchers (as well as peers) might feel more welcome in academia as a result.

So, what disabilities do I have? My primary disability is chronic neuromuscular pain, affecting my neck, shoulders, back, left arm, and left leg. It originates in accident traumas, primarily a bad skiing accident at the end of the 1990s. Almost twenty years after initial diagnosis in a city full of medical expertise, I know that there is no cure for my pain or treatment available worth the risks, so I have had to learn to adapt to it. This has required significant revision of the scope of my physics career ambitions.

Frustratingly for an academic, chronic pain makes it harder to sit and to work at a computer. I manage the physical discomfort by frequently changing working positions (sitting, standing, lying), stretching, doing aerobic exercise, getting physiotherapy, and being extremely disciplined about managing workload and sleep. Chronic pain also affects my concentration, making me less tolerant to background noises and other interruptions (some of my CPU is busy just handling the pain). Supervised by expert doctors, I take two medicines that attenuate the worst signals in the pain spectrum and let me think clearly. An annoying side effect of one of them is that it can sometimes hinder my ability to find words. This is why I might digress a bit more in a normal conversation or lecture.

Generally, pain significantly limits the functionality of my shoulders and arms. For instance, I cannot comfortably write at a blackboard for more than five to ten minutes per hour, and there is no way that I could carry a backpack with books inside or paddle a kayak. In order to carry papers, I scan them and transport them electronically. When I have a laptop or other gear with me, I have to transport it in a rolling briefcase, which I cannot lift up stairs or steps. It is astonishing how much of a university and its surrounding area can become inaccessible on wheels, so I usually carry an extremely minimal amount of gear, usually in my pockets. I am also thankful for every electric door opener mechanism that saves me from having to wrench my good shoulder to open a heavy door.

I also have experience with three mental health (MH) conditions. I developed (mild) depression and (mild to moderate) anxiety as part of my chronic pain odyssey. Then in my early forties, I developed (moderate) PTSD, from six violent crimes committed against me in my twenties and thirties by seven different perpetrators, one of them a coworker. Nowadays, none of these MH histories tends to significantly disrupt my work over an extended period. But my combined experiences do make me more sensitive to students managing mental health conditions than the average physicist.

Please do not abuse the trust I have placed in you by sharing this information here. Thank you.

Physical gear I use to adapt

Since 2003 I have had to profoundly shift my ways of working in order to adapt to long-term chronic pain disability. For example, I cannot comfortably carry a bag in my arms or on my shoulders, so I had to find alternatives. It took me years to find the right gear to reduce my everyday pain without isolating me from students and colleagues or breaking the budget. I am sharing my adaptation solutions here in the hope that they may help someone else find a quicker, cheaper solution to their own acccessibility conundrum.

I scan all papers and acquire electronic copies of books, so that I can carry my briefcase on a USB stick (currently a 512GB USB3 Patriot Magnum 2). I began doing this routinely years before cloud services like Dropbox became commonplace. I also stripped down the gear I carry every day to a bare minimum, which I can usually fit in my pockets.
To carry extra objects, I wear various Mountainsmith lumbar packs.
When the ground is free of snow and ice obstructions, I recruit a lightweight rolling briefcase or a Ruxxac hand truck for heavier or bulkier items. The hand truck has been essential for transporting heavy items especially, like getting a 27-inch computer monitor home from an electronics store that does not offer delivery.
In my university office, I sit on an ergoCentric tCentric Hybrid high-backed chair. The main features that drove my choice were: high back providing good ergonomic support all the way up the spine, seat height and seat tilt adjustments, cushioning everywhere and especially near the shoulder blades, and armrests with two axes of adjustability.
When I am on the go, I use an inflatable MEC seat cushion along with an adjustable strap for impromptu modification of chairs elsewhere.
To work standing up, I use an Oklahoma Sound portable presentation lectern with a laptop or iPad Pro.
Lying down
To work lying down, I use a Laptop Laidback lying desk with a laptop.
For a tilted work surface, I cobble together the tilt angle I want by stacking empty ring binders on top of one another, with their spines all facing away from me, with adjacent binders held together by bulldog clips on the left and right sides. To stop an iPad sliding off the bottom edge (the front cover of the binder on top), I use two bulldog clips positioned strategically to attach two erasers as bumpers. All this costs just a few dollars and is much more adjustable than any fancier-looking ergonomic tilting apparatus on the market.
Physicists and mathematicians traditionally teach using the blackboard. Even if we use computer slides nowadays, we still use a blackboard during class for scribbling impromptu diagrams, equations, and working out algebra steps. Faced with not being able to use the blackboard at all after coming back from disability leave in 2004, I realized that I could recruit an early Tablet PC connected to a projector to substitute for the blackboard. The advantage for students is that electronic scribbles can be saved and uploaded to the course website afterwards. Now I use an iPad Pro for that.
I have to ship my luggage, even for a carry-on, because I cannot carry it up or down stairs or clean and jerk it into the overhead bin. Luggage shipping from companies like Luggage Free or Luggage Forward is great for reducing travel pain, but it is expensive, and it monopolizes part of your wardrobe for longer than you are away.