I’m surrounded by people who have various chronic pain disorders. I’m not sure why this is; people with disabilities tend to be marginalized and made invisible, and this is especially true for disabilities other than what’s become the universal symbol for the community, the wheelchair. I speculate that queer communities make chronic pain more visible because they normalize talking about one’s body, and this way people casually tell me about their Ehlers-Danlos Syndrome (EDS), their chronic fatigue, their sciatica, their epilepsy, their motion sickness, their sensory issues, their car crash injuries. Not all of the people I’ve spoken to about this in the last five years are queer, but a hefty proportion are, likely a majority, and the rest tend to be public transit advocates who are sensitive to this issue. This makes it not a perfect ethnography, but I do think the combination of talking to experts and members of the lay public is good at showing some of what transit planners have unfortunately so far overlooked.
The issue of chronic pain
Public accommodations for disabled people look at a few classes of disabilities. Wheelchair users are the best-known and form the universal symbol for the group, to the point that the name of the program in Britain is “step-free access”; it makes sense since elevator installation on subways is the most expensive retrofit required, but is not the only issue. Two additional important classes are blind and deaf people; for their benefits, systems install tactile pavements on platforms and arrange things so that station announcements are both visible from the train and clearly audible.
However, chronic pain syndromes are not on the list of disabilities to be so covered by design standards. The assumption is that invisible disabilities do not really exist; one person suffering from both EDS and complications from a debilitating car crash told me that they considered walking around with a cane, not because they needed it, but because otherwise people would assume they were able-bodied and freely run into them and not accommodate their need for a seat at public facilities.
Compounding this issue is the matter of spoons. Spoons are, in the disability community, an analog of hit points or mana pool in RPGs, an abstracted level of energy that is drained by routine activities, such as household chores, work, having a difficult conversation with a romantic partner, or dealing with medical care. In addition to having a more limited pool of spoons, people with disabilities also have to deal with a medical care system that is often adversarial and hostile; doctors flat out disbelieve patients’ pain, especially when they are women or racial minorities, which issue has been publicized more broadly with post-viral fatigue for long covid. The upshot of spoons is that people with disabilities can expend a spoon and act in ways that do not appear different from the behavior of able-bodied people, such as boarding a bus with poor ride quality, but they can’t do so consistently, and accessibility standards should acknowledge this and figure out how to minimize spoon consumption.
The issue of long covid makes accommodations for people with chronic pain an especially pertinent issue. Corona is not the first infection to lead to long-term ill effects, but because it is so much more virulent than the flu and the cold, it affects many more people, including many middle-class people who are used to getting what they need from the medical system to obtain a diagnosis. A hefty fraction of the population has been made permanently disabled, outside corona fortresses like Taiwan, and this means that going forward, access for this class of people will be a serious public issue.
Disability and harassment
People with disabilities do not expect the general public or any authority to be sympathetic to them or their needs. Twitter is full of threads giving people advice about how to deal with hostile doctors, and both in public and in private, people who require regular medical care think little of the medical establishment; I suspect one of the connections with queerness is that trans people tend to have a similar negative experience.
This lack of sympathy includes outright harassment. It’s lesser-known than sexual harassment, but it follows a similar pattern: one asshole makes derisive or threatening remarks, and the general public stands by. In some cases, the public may want to be helpful but not know how and thereby make things worse: one of my interviewees spoke of a friend who has seizures and is afraid to take public transport because if they have an episode on a bus then people might try to help them in the wrong way such as sticking a spoon in their mouth, which could lead to broken teeth.
The people I’ve interviewed who mentioned harassment or public hostility to me, including women and men, did not propose the same mechanisms as women who are afraid of sexual harassment. Women who worry about sexual harassment tend to complain about a general fear of crime, mentioning problems like poor lighting, obstructed sight lines, and loitering, and positives like nearby retail and safety in numbers. I have not heard the same from the disabled people I’ve spoken to. To the extent there’s a specific ask, it’s better public awareness and training, in common with people with other disabilities (wheelchair users object to strangers touching their wheelchairs without permission).
Trains, buses, and automobiles
Most of my interviewees have said that they prefer trains to buses, often strongly. Trains have better ride quality; buses are rickety and make them feel more fatigued, motion sick, or in outright pain. Some did not mention mode choice either way; I don’t recall any who explicitly said they are indifferent between bus and rail transit. The better ride quality of trains must be viewed as a key factor behind the rail bias, the observation that at equal speed and other amenities, trains get around 40% more ridership than buses.
Other opinions are variable. Some have said that even trains induce fatigue, and as a result, they drive everywhere; others have explicitly said the otherwise and prefer trains to cars on ride quality and motion sickness grounds. Bikes are less clear – the German chronic pain podcaster I talked to said that she has difficulty riding bikes but public transit is fine, and the Americans I’ve talked to did not say much about bikes, but then American cities are in general not nearly as bike-friendly as Berlin.
The magnitude of the bus effect varies by person, type of bus, and system. Reasons people have cited for avoiding buses include sudden acceleration and deceleration cycles, uncomfortable seats, insufficient straps to hold on, brake squeal, old buses in general, the noise and rattling of the diesel engine, and the experience of waiting at a bus stop on the street with nowhere to sit. Trolleybuses, lacking a diesel engine, are better according to some but not all people I have spoken to. One person emphasized that driving on the same arterial road used by a bus was much better than riding the bus, singling out Denver for its poor ride quality in comparison with the better buses of Sydney.
Trains vary in quality too. One interviewee complained that the ride quality on the Washington Metro deteriorated after the system switched from automatic (albeit not driverless) operation with smooth acceleration and braking to manual driving, leading to motion sickness.
One thing I did not hear commonly despite asking multiple times was complaints about walking. To the contrary, one source, familiar with modern transit planning conventions, explicitly said they’re fine with walking longer to consolidated stops, and another would walk longer distances to the subway to avoid the bus. But one planner, Allan Rosen who has proposed many bus reforms in New York, has argued in public that his sciatica makes walking longer to the bus stop more difficult.
The need for seats
It’s understood that in public accommodations, the disabled, elderly, and pregnant should have first priority for seats. Signs and PSAs remind passengers on trains and buses to get up if they see such a person, designating priority seats near the doors; there are also strong social norms about getting up for elderly people (my mother taught me this when I started riding the bus alone, at age 10).
This is compounded for people with invisible disabilities. Passengers will not spontaneously get up for someone who is in physical pain. When I would get sick enough that my legs hurt, I had no expectation of being able to get people to give me a seat, and had to seize what I could on Vancouver buses. This is one of the reasons as mentioned above one of my sources considered walking with a cane, which they otherwise did not need.
The implication is that seats must be available. Every bus stop must have a bench and shelter on a system that expects people who are not desperately poor to ride public transport. Train stations and other public facilities must have ample seating space for the general public as well; the hostile architecture trend of eliminating seating in order to repel homeless people must cease.
On vehicles, the seating-standing space tradeoff is murkier. Trains that cram many seats into the same space at the expense of standing space end up cramped. Moreover, for the people I’ve interviewed, a short period of standing typical of urban rail trips, of perhaps 10 minutes or even 20, is tolerable, even at the expense of some spoon expenditure.
There is ample literature studying motion sickness on various forms of transport, public and private. Examples include Dobie et al cited in Persson, and Cohen et al, regarding trains; Griffin-Turner 1 and 2 regarding buses; and Li-Reda-Butz and Ittner-Mühlbacher-Weisswange regarding car drivers and passengers with further implications to buses.
One of my sources also told me of getting vertigo on the long escalators of the deepest stations of the Washington Metro, those on the Red Line as it transitions from running under hilly terrain to ducking under Rock Creek.
In general, motion sickness levels show great heterogeneity. Backward-facing seats, which the literature implies are less comfortable and which get a 5% discount on Korean high-speed trains, are no trouble for those sources who I asked directly, and yet they are unusually bad for me, an otherwise able-bodied person. Much depends on exact characteristics of acceleration, smoothness of ride, and road quality.
A pair of people who I interviewed together told me about sensory issues. Those are even worse-known than physical chronic pain, and have implications for system design that are at odds with current norms. The issue is that of lighting quality: lighting that is too harsh or unnatural can induce migraines and repel passengers. The Denver system, already bad for its physical ride quality, also has such harsh white light at stations and on vehicles.
Sensory issues are especially delicate, as the worst cases can induce seizures, and people who get seizures are an important constituency for public transportation as many cannot drive for fear they might be incapacitated while on the road and cause an accident.
The language of universal design
The trend within accessibility advocacy is toward universal design and fostering independence. To that end, wheelchair users are promulgating norms in which it is prohibited to touch a stranger’s wheelchair without consent. Gap standards incorporate this norm by mandating such narrow gaps between train or bus and platform that a wheelchair user can safely traverse it without requiring someone else to push them. For the same reason, there is some agitation by wheelchair users in the United States against local regulations that require drivers to strap them in when they board a bus, such as those of New York City Transit, robbing them of their independent mobility.
Likewise, the trend is toward universal design, rather than special accommodations. Nobody wants to be judged for demanding special treatment or delaying other passengers; my sources, all either middle-class or aspiring to that status, have never once mentioned paratransit as an option. In this mentality, elevators are a lifeline for people in wheelchairs but are also useful for able-bodied people with strollers or heavy luggage, tactile pavements help prevent accidents, and clear audiovisual announcements help able-bodied passengers who are not alert during the trip and are especially helpful for people who don’t speak the language. And far from an obscure radicalism, the practice of universal design was first explained to me by Laura Brelsford, assistant general manager of accessibility at the MBTA.
Accommodating people with EDS, motion sickness, sciatica, or especially in the coming generation long covid is likewise a matter of universal design. Better ride quality on buses and trains means that I have a better user experience and (through precise computer control) faster trips while people who are more sensitive to motion sickness can ride at all without vomiting. Railstituting buses with trams where appropriate likewise has wide-reaching benefits, accruing again the most to people with chronic fatigue, and the same is true of the intermediate option of using trolleybuses or IMC. Bus shelter has very high impact relative to its cost, and this again especially benefits people who can’t stand for 10 minutes waiting for a bus.
All of these design issues are difficult to quantify. This makes them invisible to the manager who asks for metrics and data for everything as an excuse for inaction, as invisible as the chronic pain sufferers who they most benefit. But they are real, and from a broad enough view, their impact on the use and health of a public transport network is large.