Invisible
Excluded
Sometimes I cannot shake the thought that this world is not made for and by the people who are even a little bit less than the able and healthy ideal of a person. Anyone who does not fit this ableist ideal seem to be excluded by design and hidden away from the public life.
This brutal realization hit me when I was a bright, young public health student.
Being a freshman in college, even at that age, I already knew my high intelligence would not be sufficient to make me an exceptional scholar, so I studied very hard to be five steps ahead of my classmates. I went to class, did my coursework, and caught up with the assigned reading materials. And of course, I spent a lot time at the medical library to read ahead and beyond. There were a few incidences where I did not realize I had accumulated a flaggable amount of overdue fines in my account until the librarian told me that I was blocked from checking out more books. My brain was very impressed by its own processing power, but my library account was certainly not.
(Fun fact: the entrance to the medical library is on the same floor of the department of public health, so it only took me one swift movement to go to the library after class.)
I was such a hopeful student who cannot wait to initiate her own mission to civilize the world. I was able to do so much beyond the curriculum because I truly believed that the profession of public health can change the world for the better. And I still believe that. I was doing quite well for a while. However, the more I studied, I more I knew that I had lived in an insulated world, a world that was far, far away from where I wanted the lasting impacts to be. I realized whatever I did would merely be performative acts of charity from a person with saviour complex or quixotic attempts to apply an bandage on a gushing wound if I did not constantly interrogate the defects in the system and design of things.
What induced this chain of unsettling realization was the lecture on healthcare systems. I am lucky enough to never have any major health issues, nor have I ever received a medical bill with astronomical numbers. Also, I was a university student in Taiwan. Foreign students are still considered as residents, so by law, I was obliged to enrolled in its national health insurance. It is a public, single-payer system, so after paying for the health insurance according to their income, people do not have to pay additionally for other things besides 1. the small administration fee at the medical institutions of their choice in every consultation and 2. the advised treatment and drugs that are not included in the health insurance. The second scenario is quite uncommon as most items are included. Healthcare is, reasonably, rarely out of reach in Taiwan. And now as I live in Germany, despite its healthcare does not run on a universal healthcare system like Taiwan’s, I am fortunate to still afford to pay for my health insurance every month. I still have some minor ailments every now and then just like any healthy, able person, but healthcare is always there when I need it – I am very, very lucky.
But in that lecture, I realized that I projected my own experience onto other people as that was the most salient notion I had. It was the notion that people would have a healthcare and welfare safety net to catch them just in case something bad and unexpected happens. I did not know that healthcare is so unaffordable for a lot of people that it is a luxury in some countries, even in those which are considered to be “developed countries”. Health insurance is so costly that it could be a trade-off between subsistence and the health safety net. Would you gamble in spite of and/or because of the uncertainty of health? It is an impossible choice. Some people just have to carry on with their daily life knowing that they are excluded from the safety net. The running paradox in that lecture was that healthcare is for the healthy and rich who do not need healthcare.
Isolated
That lecture made me rethink about access. If I were to be a person who put her knowledge in use in the real world, I had to shatter the façade that was carefully curated by the system that benefited me. I had to deconstruct the world I was taught to know and be able to see people’s invisible needs.
I have to admit that I was not as intrigued as I am now in systemic problems since I very much leaned towards a career in the natural science of public health at that time. You know, lab coat, experiments, pipettes, instruments, samples, reagents, and all that thingamabobs. Hence, my younger self was more interested in issues of physical accessibility than systemic exclusion.
One day when I was waiting for a bus to my university, a person half a block away caught my attention. It was not because of what he did; it was rather because of how still he was standing. He was standing still, expecting something. And then I spotted his white cane, a device people who are blind or visually impaired use for orientating the surroundings. He was standing still, seemingly to be expecting a bus. But no buses stopped where he was waiting. It was not because of ignorance of the bus drivers, but because the bus stop was temporarily moved to half a block away due to the parameter established for a minor public work nearby the original spot. The visual signages were very clear for people like me – people who are visually able. Walking half a block for the temporary stop would not cause me any distress. It was a minor inconvenience that would not have found its ingress to my memory if it were not for this person who was expecting his usual bus to get him home.
Not knowing what to expect, I went up to him and asked, “hello, how can I of assistance?” He answered with a calm and gentle voice, “is the bus coming?” In that moment, I knew some kind of responsibility was expected from me, so I shook off any possible doubt in my voice and spoke with the assertiveness of a pundit, “there is a minor construction, so the bus stop is moved half a block away and I can take you there.” He responded with the same composure, “no wonder the bus did not stop, and yes, please take me to the stop.” He put his hand on my shoulder while orienting the environment with his white cane. Parting the restless flux of pedestrians and vehicles was my guiding the man to the temporary bus stop. People peeled their eyes from their phone to look at the scene that dared to interfere with their routine. I was met with looks of stupor and bewilderment as if they were struck by lightning. It was very uncomfortable for me to be looked at in this very public and open manner, but over the years, I learned to use people’s stare and glare to command their attention to what I have to say. Anyway, the man got on the bus safely. I was not a hero; I was just a decent person who was able to see the need in people.
I did not take the bus to the university that day; I walked instead. I had to take a walk to process the encounter with the person with visual impairment and the setting around it. That was a 20-minute walk, not a pleasant one though. The sidewalk was uneven with a random step up or down here and there. The noise of the traffic was unbearably loud. Plenty motorcycles were parked on the sidewalk as well. It was an obstacle course minus the fun parts. The discomfort became irritation which morphed into distress as if it were the calcium carbonate in tap water that slowly builds up to be an unrelenting patch of limescale on the surface of the tap and sink. It was an absolute animosity against every and any pedestrian. This abhorrence has been known and accepted as a part of the norm in the neighbourhood by the residents there, but it did not make it right and its presence was exceptionally explicit in that particular 20 minutes. It left me with a lingering astringent and coarse aftertaste for the rest of the day.
If that was how an able adult felt, what would that be like for people with disabilities of any kind?
That would not be an obstacle course because there would be no reward at the end and there may not even be an end. That was just obstacles – excessive obstacles and blatant disparity. They nibble on people’s agency of participation in the public life until participation becomes a predicament that they withdraw from social and civic participation bit by bit each day. They might even become isolated from society over time.
Marginalized
Physical access is more than a matter of navigating the public life. It can make people invisible like magic. Sometimes it is hostile as if the access were designed on purpose to discourage or exclude people. Some would even say that people who cannot access locations or things easily because they are punished for not fitting the perfect ideal of an able and healthy person. The term to describe such things is hostile design.
If the access itself persists to be a punishment for trying to reach services, especially the public services that are meant to help them, people with special needs would then compromise and retreat to the places they are certain they can access and stay with dignity because the hassle would eventually outweighs the benefits. Or another scenario could be that the services for people with special needs are secluded far away from happenings of the regular everyday life. These people then become out of sight in the public life as if their existence were a myth. Some have help from others to access the public life, but the less fortunate would find themselves isolated from or even marginalized by the society at large. And that does not even have anything to do with what they may or may not have done; that is just because they are excluded by design.
This kind of exclusion goes beyond the built environment, e.g. street network and design, public transportation coverage, and accessibility features at the destinations or services. How the system of things is made plays a critical role too. A system made with ableist thinking is an exclusionary system that only benefits the ableist ideal of healthy and able people. I understand that some things are specifically made for a certain target population, but if a thing or service or system is intended to be inclusive, we should consider ableist thinking as a defect that generates more defects and such defects should be systemically rectified.
In other words, we need a drastic paradigm shift to undo the damage of exclusion.
Productive complaints
Even in libraries, places that are supposed to be inclusive, I still have my fair share of inconveniences that are possibly hostile design for other people. I can complain a lot on this matter. If someone makes a supercut of my complaints, that would be … very long? So here is a short list of some exclusionary features I personally find vexing:
the lack of baby changing station
the narrow space in the bathroom
the few steps that lead to the bathroom at the basement level
the narrow passageway
the lack of signages and collections for people with visual or hearing impairment
the lack of sound-proofing design
the lack of space for talking
the opening hours, etc.
The list can run wild and endlessly, but truth be told, there must be more issues laying invisible to my own eyes, but outrageously bare to other people. Adding to the complexity is the context. There is no one-size-fits-all solution to exclusionary design. The same problem will be different from community to community. If we want to tailor a good and effective upgrade, shouldn’t we begin with listening to the opinions of people with disabilities and special needs and including them actively and respectfully in the planning and design process?
An approach called design thinking has been emerging as a method to framing a problem and finding a solution to it. It originated from the design profession and is finding its way to other fields as an innovation tool. It challenges assumptions and engages the users as a crucial part of the process. This non-linear and iterative process helps the team understand user experience better and create more human-centred solutions. As the team needs to truly see the world the users do, design thinking could be one way to undo the effect of ableist thinking. Another resource I find useful is the guidelines from IFLA’s Library Services to People with Special Needs Section. Of course, the guidelines have to be adjusted for the context of the library’s serving community.
Some changes may seem small, but by making the physical environment accessible and inclusive, we create a safe space for people with disabilities and special needs in the public life. It is one small step, but it is a step to the bigger change that can leave lasting impacts. When they are no longer invisible to the public eye, they are empowered to raise their voice to demand changes that will make their life easier.
Related episode: Mikko and I