My experience with blindness 2016-01-27, ed. 2019-01-14

ETA 2019-01-14: See also my interaction tips and my talk about blind navigation & sensory experience

In the last couple years, I've had increasingly severe light sensitivity. It's at the point where in normal daylight, I can't really go outside without sunglasses on, and often even with sunglasses on it hurts too much to keep my eyes open. It varies in severity, but that's the baseline level now.

I used to have a more normal baseline, with that being only the severe episodic level. Previously, the few times when that happened, I had to suddenly either wait somewhere shady until it passed, or rely heavily on someone I was walking with in order to get around.

I've also had increasing difficulty with muscle weakness (e.g. not being able to climb stairs without being exhausted).

So in July 2014 I got a pair of walking sticks, as well as an Ambutech 8mm rolling ball tip and a jury-rigged adapter to attach the two together. Later on, I got an NFB standard long white cane, and then more recently, a much more practical 60" Ambutech folding graphite cane.

I got a crash course in cane navigation from my friend Nai, for which I'm very grateful. They taught me the basics of shorelining, echolocation, floor textures, wall detection, smell cues, etc. I've bootstrapped from there by myself.

I've been trying to get official "Orientation & Mobility" training, which according to federal law, is supposed to be free to everyone who has a functional visual impairment that would benefit from knowing how to use a guide cane. Unfortunately, basically all of the state law definitions of blindness exclusively use 20/200 acuity or 20° tunnel vision. My eyeballs are fine — my problem is functional, i.e. I can't open my eyes in bright light because it just hurts too much. And the states are the ones that implement the federal law. So I've had no luck so far getting formal O&M training.


Anyway, in transitioning from fully sighted to functionally blind when outdoors or in brightly lit environments, I've noticed a fair number of things about the environment and how blind people are treated that I'd like to discuss, to help raise awareness.

This is limited to what I've personally experienced. I can't speak to many parts of blind experience (e.g. computer accessibility, currency, etc) because I can usually do them in light-controlled environments or tolerate a brief amount of pain to do them sighted. It's also in no particular order.

1. Sighted people have no idea what blind navigation relies on.

When I'm walking outside, people keep warning me about poles, stairs, walls, or escalators. Those are actually some of the easiest things to navigate. You might think that me running into it is a problem; it's the exact opposite. Running into it with my cane (not my body) is how I tell it's there (except escalators, which I can hear). I can also hear walls to some extent, depending on distance and material.

What you don't think about are the things that are actually problems, like signs (my cane detects the signpost, but I have no idea about the sign that's about to smack me in the face) or generally anything with a gap under it (bus stop walls, railings, indoor staircases, tree branches, etc).

A major thing that you could be aware of, but probably aren't, are all the non-visual spatial cues.

For instance, if you're walking under an archway outside, the wind on your head changes, as does the echo of sounds. If you're close to a wall, there's usually a slight change in the texture or slope of the floor — plus an echo from the wall itself, if it's a hard material. If you're waiting at an intersection, you can (roughly) tell when it's safe to cross because you can hear the cross-wise cars idling and the oncoming cars going past you. If you're walking along a sidewalk, you can use the traffic noise to orient yourself and walk straight. If you're near a store, they generally have distinctive smells — and not just restaurants, but drug stores and the like as well.

The one "blind experience" museum I went to — which is a whole other post — kinda exemplifies this by chucking people in without a cane. (They even wanted to take my cane away from me; I said hell no.) The cane provides a huge amount of situational awareness; it's not like just stumbling around in the dark. If you want to try experiencing being blind, I think that's a good thing — but make sure you have a stick in hand that at least reaches your chin. The qualitative difference is enormous and hard to convey.

2. People will very often go out of their way to be helpful … but often in ways that are actively harmful.

On the positive side:

Having a white cane is like having Moses power. People will literally run or jump to get out of your way — and shove other people out of the way too. You might not even notice (without adequate sound cues) that you're actually walking through a crowded area, because there's just nobody in front of you. Frankly, this is pretty awesome, and never ceases to be amusing.

Bus drivers will usually stop directly in front of you, tell you the line and destination, help you get a seat, tell you when you get to where you're going (if you let them know), let you on for free, etc.

Random people will come up and offer to help give you directions (or walk you the whole way there). I'm pretty bad with directions even when sighted, so this is usually nice. (But see below.)

People are way, way more polite than they are to others. You can get a seat in a bus or subway car, no matter how crowded it is. They'll go far out of their way to be helpful, even when it's not even vaguely "their job" to do so, and then apologize for not being more helpful.

On the negative side:

People suck at giving directions. It's almost never actually "straight ahead" — it's a jag to the right, then around some side path I should ignore, etc. Which way is "to the right" — relative to the way you're facing, the way I'm facing, the road, the bus, …? "Past the X" doesn't help if I don't see the X. Pointing and saying "go that way" is … kinda missing a pretty fundamental aspect of the interaction.

Once someone offered to guide me to my bus terminal — which is good, 'cause it was a damn confusing building — but was either illiterate or drunk, led me to the wrong gate, and insisted it was the right one (even when the people at the gate said "no, this isn't gate # x"). That's one of very few instances I've had to tell someone "thanks but no thanks, I don't trust you to guide me accurately".

People are a bit too aggressive with offering help. An offer is fine. But sometimes I do in fact know where I'm going and how to get there, or want to go a different route than they think I should, or don't want to take someone's advice. I do not appreciate being treated like a child or told to wait for an escort.

Many people seem to think it's okay to just grab me or my cane. IT IS NOT OKAY AT ALL. It's fine to verbally offer guidance (if you take a "no"), or use a light touch on the elbow or shoulder so I know you're there. If I want to follow you, either I will hold your elbow or shoulder — NOT the other way around — or I'll just ask you to keep talking so I can hear where you are.

Physically grabbing me — let alone my cane, which is basically my eyes — is extremely startling, potentially dangerous, and feels really violating. (And I don't even have PTSD; for people who do, it's even worse.) This has even happened in medical settings, where you'd think people should really know better. And sometimes people won't take a "no" for an answer, like if I brush them away and tell them to not touch me, they'll just grab me again. NOT OKAY.

(The ONLY situation in which grabbing me is ever justified is if I am actually in imminent danger of hurting myself or others — like if I'm about to walk out into a busy intersection, get run over by something I didn't notice, or hit someone who's really frail.)

People move things out of my way. This is a bad thing when done without my active consent. Do NOT screw with my object permanence. Moving a chair when I've already sensed it means I might fall because it's no longer where I think it is. Moving my cane when I've put it down temporarily means you just stole my eyes. It is never okay to move or grab my cane without my explicit consent.

Very relatedly, people will tend to treat me as less than fully adult — e.g. making decisions for me without asking, treating me like I'm stupid, talking to my companion, etc. This applies to everything from minor things like asking my companion for my order at a restaurant… to even if I'm in an emergency room and addressing my companion or ASL interpreter, rather than me, for my medical history, information about what's happening, etc. It's extremely insulting.

3. There's a serious reduction in independence — especially in knowledge of what options are available.

If you go to a store, the staff will usually offer to list a few things on the menu, tell you where something is that you request, or get it for you. That's great.

However, how do you know what's available to you in the first place? You can't ask for something unless you know it's there.

Want to just be able to pick from all the options on the menu like anyone else? Too bad; they probably won't have the patience to list it all. Sometimes they'll even outright deny that something is available when it is. And hardly any restaurant has Braille menus.

All those maps and signs on public transit? Totally inaccessible. Good luck figuring out how to make your connection in a big subway terminal, or even knowing if you're at the right bus stop. Elevators usually have Braille … but only in part. Often the bit saying what exactly "P" means, or what's on what floor, is visual only. And many of the buttons just don't have any Braille indicator of what they do. Maybe it's the elevator call button; maybe it's for an emergency call — take a guess.

Want to comparison shop? Nope. Price tags, descriptions, packages, etc are completely inaccessible. (In the UK, medicine is almost all packaged with Braille boxes, at least. Not in the US, though.)

Want to know what's being advertised? Yeah, I know, not usually — but sometimes it's useful information. Maybe you're passing something that's actually of interest or a sign that tells you that there's construction ahead. Too bad. There's no way to know without filtering it yourself, but you don't have that info, so too bad.

Want to know what street you're about to cross? Ha. Either you have a smartphone with GPS, or you use dead reckoning. Or you have to keep stopping to ask people, who often give wrong directions. (And I just don't want to have to be that dependent on others.)

Want to even know where the other side of the street is exactly? Lots of crossings have stripes worn too thin to feel or hear with a cane, and the ramp or curb or so forth often point the wrong way — if you just go straight, you might walk into traffic. Accessible intersections are rare. Aside from a couple European countries where they're directly in the line of walking (so you can't miss them), the poles with the press-to-walk button are often hidden away somewhere. There's no way to know they're there short of a thorough search.

(On the other hand, drivers generally will yield right of way if you wave a white cane, even if you're not even vaguely in the right spot. They'll honk and shout, which is also very unhelpful, but if they stop, you can cross.)

Continuation

… anyway, that's just a few things off the top of my head. It's not nearly exhaustive, but it's some of the more salient bits of what I've noticed in transitioning to being functionally blind for navigation for over a year now. It's been interesting being part-time blind.

There's so much more I notice that I never did before. It's rather freeing to be able to just close my eyes when I want to, reduce the pain from light, with reasonable confidence that I can go where I need to. (BTW, this is another reason why I always have sunglasses: so you don't know if I'm closing my eyes or not. It makes things less socially awkward if I just want to rest my eyes for a while, and lessens the risk of you misguessing my current visual capabilities.)

It's given me a greater appreciation for how calming it is to be in a truly dark place.


I think all sighted people should try going blind (with a cane and a sighted helper) for a day or two.

It gives a lot of insight into accessibility issues, and in particular why many well-intentioned ways of designing things (or interacting with people) totally fail to actually account for what it's like.

It also reveals a lot of neat aspects of your everyday experience (like the sound of a wall through echolocation) that you perceive but don't notice. Because it's so qualitative that I don't think I can adequately describe it, and all hearing people should be able to do it just fine, I leave it as an exercise to the reader.

Want to understand what it's like to be blind? Try it.

Don't try it badly

ETA 2019-01-14

Please do not try to experience what it's like to be blind without in-person expert guidance (from an O&M instructor or skilled blind person), unless you have an actual personal need and cannot access such resources (in which case, contact me).

To accurately understand what navigation and sensing the world is like for blind people requires a lot of guidance about (and cheating around) things that you don't know you don't know. Without it, your experience will result in incorrect and negative views of what blindness is like, and put you and others at physical risk.

I do run workshops for this, which I plan very carefully and tailor to a specific environment and participants, so that I get positive results. If you know of others who do something similar, i.e. blind sensory training / immersion workshops for sighted people that are grounded in a positive and empowering perspective, please tell me about it.

Unfortunately, I'm not aware of anyone else who does something comparable. I only know of training for blind & visually impaired people who actually need it to navigate, and of no-training "simulations" that I strongly oppose. Please don't do those; they are actively harmful and will actually worsen your understanding. (That's an extremely harsh thing to say of any well-intentioned training or outreach attempt, but sadly, it's true.)

Resources

Updated 2019-01-14

If you're interested in blind navigation techniques, please read:

or watch: