A world designed for people like me
/I have defended the terms “disability” and “disabled” in the past because I like both linguistics and logic. But today I’d like to do a thought experiment that may put those terms in peril.
There are those who don’t like the word “disability” because it implies that only one type of body is right and good and perfect. It places emphasis on some particular capacity that someone may lack when compared with a supposedly perfect standard, while ignoring non-standard capacities they may have that the standard human doesn’t possess. .
The Deaf community has made a good case for getting rid of the disability label. Many Deaf people live without any sense of disability because they live primarily within a community that uses sign language and written communication. Both entertainment and safety are also well developed in this community. And it is only when they enter the hearing community that Deaf people become more likely to suffer injury due to mishaps or to fall victim to police violence.
An image of a middle-aged blonde woman with sunglasses and an expression of peace - Creative Commons image by Marneejill of Flickr.com
If a person is perfectly safe and able in one society but not in another, is the fault or lack of ability with the individual? Or is it rather a problem within the society?
Many of us assume it is the individual who should adapt. At the very least, it is easier for an individual to adapt than it is to change a whole society, and when we travel to different countries we accept that it is a good idea to adapt somewhat to the culture, and even more so, to the laws of that country.
But most people with disabilities don’t have the strong community and institutions that Deaf people have built up through years of struggle, and we likely never will. Disabilities come in many shapes and sizes and it is impossible for each group to build their own society. We will always be strangers and foreigners in a world that isn’t built by or for us. Beyond that, in many ways we cannot adapt to society for various physical and neurological reasons. That is why efforts have been made to adapt society just enough to give us a narrow opportunity to live.
Abled people often express a bit of resentment over these adaptations, as if parking spaces that allow people with mobility impairments to get to the store at all are somehow a huge advantage. I recently stumbled across a news story from my home state of Oregon, where I am moving in a couple of months that sent raw fear into me.
In the town of Brookings, Oregon, a woman named Jennifer Gaymen, who is visually impaired, like me, and also mildly mobility impaired, also like me, was arrested, jailed and charged with a felony for simply surviving in the only way she or I can. Like me, she can’t drive or move in the roadway, due to vision impairment. And she also can’t walk long distances due to an orthopedic illness. So, she rides a mobility scooter slowly on the sidewalk much like a wheelchair user. I do the same thing.
But a few years back, abled people in Oregon felt resentful of these mobility scooters, much like the disabled parking spaces. There were some abled people who abused electric scooters on sidewalks, behaving dangerously and scaring or injuring pedestrians. So, a law was passed banning all use of electric scooters on sidewalks. Because of the resentment toward people with disabilities this law was expanded to include mobility scooters and even to bar the use of mobility scooters on roads by anyone who doesn’t have a full automobile driver’s license, which essentially excludes the very people mobility scooters are intended for.
This is despite the fact that a search failed to unearth any case reports alleging that any person with a disability using a mobility scooter has abused pedestrian rules or endangered others on sidewalks in Oregon or anywhere else.
This law renders Jennifer Gayman and me—people who are normally quite active and capable—severely disabled and essentially homebound. Gayman was cited for riding her mobility scooter and then jailed and convicted of a felony for refusing to abandon her expensive mobility device in the middle of the night in the winter and walk two miles home, which she physically could not do.
She has sued the city under the American with Disabilities Act, a federal law which clearly states that people with disabilities can use whichever mobility device best fits their needs and that local laws must adapt. But she has been homebound and restricted from getting around for two years while the case languishes in the court system.
Once I might have been significantly disabled before this kind of technology existed, but today with the help of technology the “dis” or “un” abling part of mobility is significantly mitigated. If a law then imposes artificial disability on me, how should I be labeled? Does it make logical sense to say this is my “disability?” It isn’t my “dis” (wrong or lack of) ability that causes me to be homebound in that case. It is more correct to say that I am a “restricted” or “banned” person, because it is external restriction that imposes the primary limitation.
Maybe we should start using these terms when referring to individuals who live in a society where rules, laws and social norms restrict or ban them when reasonable and healthy adaptation is possible that would make them fully capable.
This all got me thinking about what a society would have to look like to make me completely abled without restricting others. Even allowing reasonable access for mobility scooters only makes me theoretically able to move a little bit—slowly and very locally.
Here’s the thought experiment then. What would it take to really make it so a person like me who is legally blind with some mobility impairment would be able to view my differences like many Deaf people do, simply as a difference rather than a disability?
To be clear, I can’t cover every type of different body or neurological type because I don’t have all those experiences. This is just an exercise in figuring out what would make the difference for me.
An image of older adults riding bicycles in professional clothing next to a modern street car in Copenhagen, Denmark - Creative Commons image by Dylan Passmore
Getting around
The first issue has to be mobility because even though some of the other issues are arguably more important, history has taught us that if people with disabilities can’t get to the table, nothing ever changes. Secondly, the mobility issue is the one that would require the most difficult adaptation from society.
What I need is to be able to get around both locally and beyond about as fast as other people. That is simply what I would need in order to “not be disabled anymore,” to be able to work competitively, take care of all of my responsibilities and take advantage of all the opportunities everyone else takes for granted. I currently really appreciate ANY mobility options, even when they are much slower and more difficult than those most people enjoy. But this is what it would take to make me “abled.”
What could a society look like that would give me that?
Well, public transportation would have to be the mainstream. If there was personal automobile transport that you have to see in order to drive, it would have to be a secondary thing. Roads would not be what goes everywhere. Rail lines would. Roads would be the secondary sort of thing, like a hobby or something special.
Parking lots would be small and easily navigable on foot because most people would use trams, trolleys and trains for major transportation. Our cities would no longer be 60 percent asphalt, maybe 20 or 30 percent at most.
Because they would be used by vast numbers of people, these rail transport systems would be well funded by taxes and affordable for people to use, though it would be an expense, like gas is to many people today. You would hardly have to wait for the next tram or train in most places because that would be “the main road.” Because of the relative high speed of rail transport, the fact that these vehicles have to stop to pick people up at various stops would even out and transportation would be about as fast as road transport is today, except over long distances it might well be much faster. And I’m not even counting traffic jambs in this accounting.
All these public transport options would accommodate not just wheelchairs but every kind of mobility device and likely also bicycles for everyone who wants them. The first would ensure accessibility for all and the second would just be common sense.
Under these conditions, people with disabilities would move just as fast as abled people, and thus in a lot of ways, they would become abled and would be full competitors for jobs and full contributors to all of society.
Routes for bikes, scooters and walking would be everywhere and well adapted to the landscape and the rail transport system. There would always be a ramp. There might be some lanes for fast movers where pedestrians, children and people with vision or neurological impairment might not fit in, but there would always be a slower alternative and safety rules for when these intersect.
People with vision impairment could have color-coded elements on their scooters or bikes to warn faster riders about their difference in reaction times and perception, but they would also have to demonstrate that they were not dangerous to pedestrians and those slower than themselves.
Yes, these changes would mean that society would have to adapt to make people with mobility, vision and other impairments equal and abled. However, these adaptations would also help to solve climate change and be environmentally friendly for everyone. The reductions in air pollution and the greening of vast swaths of asphalt in cities would improve everyone’s quality of life and would likely mean more pleasant community space for everyone. It would require adaptation by society but the benefits would also go to everyone.
Social norms
The other most significant adaptation would have to be in social norms. First, we would have to start talking about diversity in terms of different shapes and types of bodies and brains as much as we talk about it when it comes to race and sexual or gender identity. It would help that, with the mobility adaptations detailed above, the fear of disability as debilitating and physically limiting would begin to abate among all people.
But some prejudices and stereotypes hang on long after legal and infrastructure restrictions have been lifted from a group of people, as we saw when the civil rights movement lifted many of the legal restrictions on people of color. It would take some time for social norms to develop so that people would not respond so negatively to a person with a facial or speech difference, but just as reactions to people with various skin tones have changed, this too can change and would go a long way toward making disability no more than a difference.
Just as there is a push to change social norms today to use the pronouns preferred by individuals with non-traditional gender identities, some social norms would need to change with regard to disabilities as well. People would need to become more flexible and educated in how they interact. Because 15 to 20 percent of people have a disability that affects communication and social interaction, flexible ways of interacting would become part of our educational system for everyone, just as spelling rules and how to use money are part of the curriculum today.
Everyone would know to speak directly and clearly to a Deaf person. Everyone would know to let a Blind friend know when they approach and who they are. Everyone would know not to move a Blind person’s things. Everyone would know how to interpret and engage with people with neuro-diversity because it would be a normal part of daily life and would be as much a part of manners as “please” and “thank you.”
Bullying people about a physical, neurological or other kinds of differences would become as anathema as any other kind of harassment. It likely wouldn’t disappear as harassment that we clearly see as serious and relevant today has not disappeared, but it would be treated with the same seriousness that assaulting a privileged person is in today’s world, and its occurrence would be massively reduced.
As a result, attitudes toward friendship, romantic relationships and professional relationships with people with any sort of difference would markedly improve likely without the need for much more in terms of explicit rules or “political correctness.”
Public services and commerce
Naturally, buildings and public spaces would be built to accommodate the various shapes and sizes and legs and wheels of modern humans. Ramps and elevators would be maintained and mainstream.
Public signs would be bold and large print—larger than surrounding advertisements. Advertisements would be given a specific space, and not allowed to dominate attention or prey on neuro-diverse people or disorient visually impaired people.
Many signs, buildings, transportation vehicles and other public objects would have a small short-range transceiver which could be picked up by bluetooth and cell devices, so that blind or text-impaired people could listen to an audio transcription or description through earbuds.
Thus a street car would announce over a common frequency its number, direction, stops and conditions. A hospital or mall map or sign board would give verbal directions directly into the earpieces of those who pointed and clicked at it. Public restrooms, information booths, checkout counters and other important points would provide a directional beacon and broadcast over several hundred meters.
An image of grinning military veterans with prosthetic limbs fist bumping while using mobility devices freely in the middle of a major road - Creative Commons image by Herald Post
There would not only be Braille and large high-contrast print on elevator buttons but also on the aisles in grocery stores and on other things everyone needs to use. All labels on goods in stores would be required to have a QR code (turned outward on the shelf) which could be quickly scanned for audio description. Sections of a store would also be clearly marked with large print and short-range audio beacons.
The brightest and most visible signs would not be advertisements but rather necessary information. Shopping would become a regular, pain-free activity even for visually impaired people.
Instructions posted on walls in public offices would show up as audio notifications and blind people would no longer have to rely on the kindness of strangers to inform them of rules or procedures when visiting the local city hall or health center. A lot of this would require technology but it is all technology which is already easily available and in wide use today for other things.
Technology, entertainment and work environments
Technology would be a great help in opening up productive engagement to people who were previously “disabled” by our society in so many other ways as well. In my case, facial recognition software could be used with a small camera worn on clothing or glasses that would recognize the faces at least of the people I had already met and would identify them to me with audio notifications. This would break down vast barriers in professional networking and community interactions.
Similar technology could be used to help visually impaired people navigate. Already mapping technology is able to tell us how to navigate within a few meters accuracy. A little investment could render blind people significantly abled by giving on-demand information about nearby addresses, hazards and points of interest.
Technology could easily be developed that would provide detailed description and warnings on familiar routes that the individual could input manually, including things as detailed as when a step is needed and which direction to turn and how much. With the technology we have today cell phones could easily tell a blind person where to find a known person or a nearby business or landmark with detailed on-foot instructions. While most of these technologies stop their assistance once the person is close enough to theoretically look up and see what they are seeking, the assistance could be extended for blind people.
One piece of technology which I have not yet seen but which could be developed with our current technology and which would greatly increase safety for blind and visually impaired people would be a program for a camera mounted on glasses or a headband that would identify obstacles through an earphone.
While a properly made white cane is actually a pretty nifty piece of mechanical technology, it only identifies obstacles on the ground and many injuries happen because of signs, awnings, tree branches and the like at higher levels, especially at face level. Even service dogs (may they be always appreciated) don’t always catch everything.
We have devices that beep when there is an obstacle behind a car backing up, and we could have a much more sophisticated detector mounted on glasses that would help a blind person navigate safely. The same technology with a bit more development could even be adapted to help with tracking moving objects, animals and people, and might eventually provide an aid to self defense and sports.
Some technology changes would require human intervention, at least in the beginning. We would still need humans to put closed caption text and audio description into movies and TV shows or onto media images, but these would be regular jobs within these industries because people with visual and auditory differences would be normal members of society with the economic clout to matter and even if they weren’t a “big enough” demographic to be “profitable,” it would be part of the social norm, to include these things.
Would there still be jobs that I couldn’t do because of my vision and mobility differences? Sure, there would. I still couldn’t be an airplane pilot or a pro-basketball player in the sighted league. But neither could most people. It takes a very specific set of abilities and skills to excel at those jobs and you don’t have to be what is considered “disabled” today to be out of the running. I also couldn’t be a banker, because I am constitutionally incapable of focusing on money that much. We would all continue to have different talents and ability levels in specific areas.
In a fully adapted world, not everyone would be suited to every job. But everyone would have some useful and appreciated talent. Technology would help in in many cases but it would no longer be surprising that a blind person or a person with a wheelchair is a successful professional.
A few more details just for me
Everybody has their own specific needs and with the development of technology I hope that some things will become more affordable that would help me to do things as fast as everyone else.
For example, I would love to have talking measuring cups or even an electronic mixing bowl that would measure or weigh ingredients audibly as I put them into the bowl. Another thing that would allow me to cook my family’s meals better and faster would be small electronic chips on my jars and containers of ingredients that would make a small sound when called for. The calling could be done from a cell phone through a voice activation system like Siri or Alexa.
I enjoy gardening and one of my pet peeves about my vision is that it is very hard to weed when I cannot see the difference between my small plants and the weeds. A technological solution in the future might be a program on a camera mounted on glasses that could be taught through a push of a button to recognize young plants at a certain stage of development. I could then find one of the plants I want to preserve, point the camera at it, push a button and dictate to the program what plant this is (since plant identification programs aren’t yet very accurate with very young plants). I could do the same with common weeds.
Then as I weeded the program could give me a running commentary of which plant the camera was pointed at. It might not be 100 percent accurate, but given the very specific identification in the immediate environment, it would likely be quite good. Beyond that, maybe someday scientists will develop gardening gloves with sensors on the finger tips that can differentiate between various plant DNA. I’m getting a bit sci-fi here but the fundamental technologies exist.
Like many people with mobility disabilities, I watch the development of ever more flexible mobility devices and ever lighter and stronger batteries with great interest. I recently saw a two-wheeled wheelchair like vehicle based on a Segway which can handle light off-road terrain. It’s currently prohibitively expensive, but the technology is there to allow me to get back into nature on the hiking trails I used to enjoy even through the pain of mobility impairment. I hope more and more devices will be made for people who are physically active, strong and well-balanced, but who have joint or bone difficulties that make off-road movement difficult.
I would love it if there was a program using a camera mounted on glasses that would help a blind person aim at a basket in basketball or strike at a baseball with a bat. It could be done but it would require the athlete to develop a lot of skill in responding instantly to the signals. But then, every athlete needs a lot of practice.
When I was a parent of young children, I tried to find some sort of bracelet that my toddlers couldn’t take off that would help me keep track of them with even greater accuracy. I got very good at telling exactly where my toddlers were and what they were doing by hearing. But a locator that could be called or which would make a noise if the child exited a prescribed area would have made our family life less rigidly controlled.
As it was, I had to have gates everywhere and be extra vigilant. It was doable but required a huge effort that could have been put into more fun and relaxation in those magical years with young children.
Those are all the things I can think of just now. I realize that I didn’t include anything in there about making visually beautiful things accessible to people with vision impairments. I would love it if museums always made tactile replicas of interesting and fragile exhibits so that people with vision impairments (as well as the world’s much more numerous tactile learners, such as nearly all children) could touch them.
But when it comes to seeing a sunset or a mountain vista, I actually really enjoy these already. I’m not totally blind, of course, and there is a need for writers to continue to have jobs creating endless and wonderful descriptions for those who are. but I believe beauty is something we all experience in our own ways. We can try to share it with people who perceive the world differently, but the truth is that all of us are “differently abled” in that regard.
Final thoughts
When I envision a world that is fully adapted so that I would no longer be “disabled” or “restricted,” it turns out that this imaginary world would be better for everyone else too. OK, some people might have to get their driving fix through video games or on special sports ranges, but with climate change, they’re going to have to do that anyway. And really is one hobby actually more important than the 20 percent of the population who cannot drive for one reason or another?
But we don’t live in that world. We live in a world where, in the state of Oregon, Jennifer Gayman (and every other person with some mobility difficulty who also cannot drive) is made to be severely disabled. This whole experience—seeing that news story and doing this thought experiment—has changed the way I feel about the word “disabled,” which I used to think was a reasonable factual descriptor.
In a lot of situations, we may have to start referring to some of us as “restricted” or “banned” people, because it isn’t the abilities of our bodies doing this to us, but rather the artificial constructs of society. When the benefits of available technology are denied to us, either by law or by economic marginalization, we are “restricted,” not “disabled.”
While I was writing this post, my father went and talked to the local police department where I will be living in Oregon and obtained an exception for me to be able to use a mobility scooter in that small town. I’ll have to mark it with large disability signs, which I really don’t mind personally. It’s the fact that my reprieve is limited to one town and even one generation of local officers that is worrying.
I will likely never live to see the adapted society I describe fully realized, but I do hope that I might just see a day when these kinds of restrictions imposed by society on me and many others are viewed the same way we now view racism or transphobia—at least by allies. We’ve been asked to wait our turn for inclusion for a long time. I hope our time will come.
