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My disabilities

Disabled academics usually hide our disabilities. The reason is ableism: in academia we are judged extremely harshly if we show any weakness, be it intellectual, emotional, or physical. Peer 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 inference is of course totally ridiculous. Disabled and sick people are valid, important, and valued members of society and of universities. Just ask Stephen Hawking!

My disabilities are not obvious at first glance: they are classified as invisible. This does not make them nonexistent. But good luck in convincing anyone of that when specific accommodations are needed, such as a wheelchair at an airport or a special chair at a conference. Quite generally, disabled people should never have to disclose details of their disability status in order to be afforded accommodations when legitimately requested for medical reasons. That's the law. But the law is widely flouted and poorly enforced, and the percentage of fakers is widely assumed to be much larger than it actually is. This puts disabled folks lucky enough to have a job in a real bind, known as the disclosure problem.

Ableism, both structural and individual, wears you out. There are physical and attitudinal barriers to inclusion everywhere. I have lost count of the number of events I have been excluded from because organizers did not prioritize accessibility. Over the past decade-plus, I found that university people of all stripes (staff, faculty, students) kept forgetting that I am disabled even after being told multiple times. I am royally sick of the hassle. I also discovered that staff tend to cooperate better when I explain humanly why I need the accommodations. Accordingly, I have decided to disclose here to save time -- now I just send a web link. But you should be aware that disclosure is feasible only because I have tenure. I hope that being open about my disability status as a full professor may eventually help smash glass ceilings for more junior disabled academics.

So, what disabilities do I have? My first 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. Fifteen years after 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 hinder my ability to find words. This is why I sometimes digress more than other people 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.

My second disability is IBS, a functional gut disorder. This was probably triggered by digestive surgery in 2009. The main professional effect of the IBS is that it forces me to be a picky eater. Unfortunately, most catering firms only know how to handle large-awareness special diets like nut-allergic or gluten-free, and have no idea how to cook for folks with IBS. After truly epic amounts of hassle in getting food accommodations at work-related events in the recent past, I have largely given up trying -- I prefer to go hungry in front of people eating than face social exclusion, because so much academic business gets done over meals.

I also have experience with three mental health conditions. I developed (mild to moderate) depression and anxiety as part of my chronic pain odyssey. I also developed PTSD in my early forties, 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 significantly disrupts my work in an average month. But my combined experience does 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.

Carrying
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.
Sitting
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.
Standing
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.
Tilting
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 eraser bumpers. All this costs just a few dollars and is much more adjustable than any fancier-looking ergonomic tilting apparatus on the market.
Blackboarding
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.
Travel
I have to ship my luggage, even for a carry-on, because I cannot carry it up 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 expensive, and it monopolizes part of your wardrobe for longer than you are away.