Disability Admin: The Invisible Costs of Being Disabled

Abstract

Consider these two scenarios: 1. Imagine you or someone you love begins to have an inexplicable array of symptoms. The symptoms might include feeling dizzy, forgetting common words, or sleeping twice as much as normal but never feeling fully alert Imagine the steps you would take in response. These might include making a doctor's appointment and, when that doctor has no explanation, researching the symptoms online (if you have not already), then searching for other doctors, trying to find experts, looking for treatments to try, and hunting for people with similar symptoms who have learned anything about this constellation of symptoms. Imagine also that you do not have much money, and you either have to go into debt to pay for medical specialists or you have to struggle with an insurer that refuses to pay for all these doctor visits because there is no diagnosis. Try to picture how much time and mental energy you or your loved ones would spend in response to this mysterious condition.

2. Imagine you live in a city where your local subway system has no stairs or escalators. The exits are all via elevator.' And imagine that the elevators break down regularly, so particular stations sometimes lack an exit route for hours or days. This means that, whenever you take the subway from station A to station B, you risk getting stuck at B unless you check an "elevator status" app online to make sure the elevators at B are in service. And even then, elevators at B may break down while you are en route. On such trips, you must research alternate routes on the spot-if you even have cell reception underground at B-and then get back on the train to travel more stops to find a serviceable exit (C). Once you are above ground at C, you must find your way to alternative transport back to where you were going, near B. Imagine you work far from home, and the subway is the only way to get to work in less than an hour. Picture the time and mental energy that navigating transportation would require.

Scenario 1 is familiar to anyone who has had an ailment that is unusual or difficult to diagnose-or whose loved one has had such an ailment. Scenario 2 builds on the reality of one subway station in a U.S. city that can be accessed only by elevators to conceptualize a subway system that would invite all readers to imagine the experience that wheelchair users face in unreliable subway systems. Multiple lawsuits catalogue the challenges faced by wheelchair users in cities where subway elevators are scarce and function poorly.