> I had to lift the landscape in my mind, rotate it ninety degrees, and set it back down.
Fully sighted, but I have been doing something vaguely similar for decades. As soon as I know an area decently well, or have taken at least one good look at a map, I can visualize the entire region’s roads and rotate it in my mind to find the best path (shortest time or least stress) from point A to point B. It’s fantastically handy to use in larger cities without having to pull out a map.
And as long as I have prominent landmarks to reference (mountains, etc.), I have a remarkably good sense of direction thanks to that mental model. Provided I have been fully aware of the scenery during my first trip anywhere, I can usually find my way back there from any other direction in which major roads exist. There is a fair bit of “hunting” to find the right road to go down, sure, but I rarely stray significantly from the correct direction.
Downside is that this is 100% reliant on sight to triangulate across geographical landmarks, I’ll grant you that. But it’s the mental model being used by the author that I’m surprised to see is so apparently similar.
I developed this ability through backpacking and navigating with topological maps. You're frequently reading the map oriented so that it matches your desired heading, rather than always reading it with north pointing up, so you're changing that orientation as you travel.
At some point, I found that I was doing that with my "mental map" of reality as well. It's very handy indeed.
I'm usually very good with visualization and spacial reasoning but these days I've become so reliant on mobile phone map software that I barely pay attention to my surroundings and I can never remember how to navigate around an area. My mind's garbage collector is highly optimized and my focus is so narrow sometimes that I don't notice things that happen right in front of me. Though when I do notice something, I remember it vividly for a long time.
This article is a testament to the importance of focus and awareness. It seems like being blind forces you to be in the present and pay attention to every small signal that you can get from your environment.
I have the same exact thing and am only recently realising that it's not very common. So far I've always been amazed when people do not have a similar way of navigating, or any good sense of direction at all, but for me it usually just takes one scan of a place I'm good to go. Whether that is me looking at a map once, or landing in a new city and walking one path, that is enough to already build a pretty good model in my head.
I have to do this every time I go to Salt Lake City. I’ve been to Denver a lot and I’m so used to the mountains being to the west, but in SLC they’re east of the city. I am always 180 degrees off until I really think and re-orient. It’s exactly as he described… take my mental map and rotate
I have the same disease as Andrew. Well, sort of. There are many variants of retinitis pigmentosa. From what I can tell, I am much further along in my progression for the same age.
This story was a good read and for the most part up lifting. It only really touches on the dark side of blindness, pun intended. When I was diagnosed I found solace in Jim Knipfel's accounts of dealing with RP, the most famous book likely being Slackjaw. Knipfel never pulled punches, he wrote about the raw harsh reality and squeezed black comedy out of it. While everyone around me was trying to be encouraging about my predicament, Knipfel gave validation to how I really felt about RP and could make me laugh about how fucked I was. If you want to see the other side of blindness I recommend Slackjaw, but be warned, it is basically the counter point to this story.
My 18 month old has ushers, we're dealing with the hearing loss but I'm dreading the day when we have to tell him about his eyes. We've got a few years to go before that day, at a loss to when/how that's going to happen.
If I were you I would begin experimenting with gene replacement therapy. It seems like a straightforward fix in the case of Usher’s. In the worst case scenario there are things you can try in your own garage.
My limited understanding is that the gene involved is very large and therefore difficult to use in traditional gene therapy, though I have obviously very limited knowledge in this.
I too have a child with Ushers (1F). We told him at age 10, though obviously it didn't really register until some years later. Please feel free to reach out to me.
I also have RP, was diagnosed a year ago. I'm tankful for now I can still work and use a computer but I can no longer read a book, paper documents. I'm hoping science can one day help us as I would love to see clearly one day.
I’ve had a lot of interaction with the blind community both due to personal ties and attending events like CSUN and the NFB annual meeting. And one striking thing is that some people are considerably better at being blind than others. What’s particularly interesting is that I know persons with no usable vision whatsoever who are considerably more capable of navigating than legally blind yet partially sighted persons. It goes to show that it really is a skill.
Most blind persons have sighted parents since most conditions are autosomal recessive. I myself recently learned that I’m an RP carrier. I mention this because from listening to persons who have struggled with vision loss, a lack of support, usually in the form of denial, from their sighted family has really hurt them. So if you might have children with an eye disease be sympathetic and really listen to them. Don’t minimize what they’re going through, but help them understand that there is still a whole lot that they can do.
My girlfriend and I both have visual impairments, although hers is much more significant (she's legally blind). Until recently, she refused to use a white cane or do orientation and mobility training. It took a lot of convincing to get her to learn how to use a screenreader. I used to recommend simple accessibility techniques to her (using bump dots on her microwave and stove, or asking her landlord for an accessible thermostat) and she'd say no because she was worried that she would be perceived as blind.
As a consequence she wasn't very independent and her lack of independence was causing conflict in our relationship.
Eventually there were enough incidents at work that her bosses made it really clear that they wanted her to use a white cane. Between that and me pushing her, she's finally accepted that it's time to start learning the skills and techniques that blind and visually impaired people use to be independent.
I think she's discovering now that there are so many techniques that people have discovered for adapting to vision loss - you just have to be willing to learn them.
Her parents are very nice people, but they never pushed her to be independent. I think there was a combination of denial and a perception that being blind is somehow shameful.
> I know persons with no usable vision whatsoever who are considerably more capable of navigating than legally blind yet partially sighted persons. It goes to show that it really is a skill.
It's more than that, too, especially with progressive eye diseases. The path of least resistance, and the intuitive thing to do, is to rely on whatever vision you have left. At some point, though, your vision degrades so much that qualitatively different approaches— like ones that don't rely on any vision at all— will serve you much better. But even when that's true, switching to something radically different is scary and hard. So many people cling to navigation strategies that don't really work for them anymore much longer than they should.
> Most blind persons have sighted parents since most conditions are autosomal recessive [which can lead to a] lack of support
The inherited retinal disease that runs in my family is autosomal dominant, which means it has appeared all over my family. In fact, on my mom's side, it's appeared in every single generation for at least 5 or 6 generations, maybe more.
And tbh just having that context makes my own disease somewhat less scary for me. I've seen a lot of people in my family go blind, so I know what's happening to me and what's coming. I also know that it's not the end of the world, because blind people in my family have still had friends and hobbies and food and shelter everything else that's really essential in life!
It's definitely still scary, though.
> denial, from their sighted family
I think to some extent, parents just become desperately optimistic when they know that their kids have a struggle ahead. My mom (who is legally blind) has failed repeatedly failed to hear my sister (who shares her condition) about the progression of her own vision loss. In a lot of ways she does 'get it', of course. But there are also moments where she acts surprised by something she's already been told repeatedly, or where she expresses thoughts that are weirdly grasping at remote or fantastic possibilities, like that maybe it will only affect my sister in one eye, or that the progression will stop, or that a cure will be developed in time to stop the progression before my sister goes blind. For blind parents, I think a sense of guilt about passing on what has already been a horrifying trial for them to their own children can unfortunately motivate that same denial or wishful thinking.
I don't have that disease but my retinas are progressively tearing and will probably flake off well before I die. As someone with a seeming inability to internally visualize things (aphantasia) and a terrible sense of direction I'm really dreading trying to navigate (or do anything) when I go blind.
I'm firmly in the denial camp and I justify it to myself by looking at all the amazing retinal repair, replacement, and implant studies in restoring vision in mice. The most promising are the implants that release a small molecule that can cause the internerons that remain to become light sensitive and fire. In the experimental mice this somewhat restores their behavior on navigation tasks. Of course I've been reading about these mouse studies for 20 years and so far going blind still means you remain blind.
Some gene therapies which can restore eyesight have already been applied in humans, including for really similar inherited retinal diseases to the one the author of the OP has. Unfortunately such therapies are gene-specific, and there's been no work on one for what I've got. :-\
> As someone with a seeming inability to internally visualize things (aphantasia) and a terrible sense of direction I'm really dreading trying to navigate (or do anything) when I go blind.
BIG SAME
I have never been much of a visualizer. I can't even draw a straight line. I have ADHD and I very easily get lost as it is. I have a feeling that blind navigation may end up being harder for me than it is for many. Ugh.
Being blind is not the issue. Existing in a society that never really has embraced the fact that some members are incapacitated and would need better support is. I am 43 now, and blind since almost 40 years. And even if you are not going to believe me: blindness is definitely not the issue. When I feel down, it is always because society does not want to accomodate for people with disabilities. And I say want because of the digital divide, and the unwillingness to change things for better accessibility. About 20 years ago, web accessibility felt like "Yes, lets do it!", these days, I read a lot of negative comments on HN which basically boil down to "We already have a small revenue margin, we cant be bothered to basically work for free for these subhumans". I am exaggregating of course, but to tell you the truth, it is just how it feels to someone dependant on society wanting to be inclusive. And I am not talking about individuals. Many individuals will tell you they support better accessibility. But once you go higher up, you realize that is really just an individual thing. Society as a whole does not want to be bothered with having to accomodate for its disabled members. In the past, it was easier to "fix" this: people with disabilities were put in institutions where almost nobody could see them. These days, with all that pesky independence, it is becoming harder to look away. But still, a solution is not in sighted. In fact, the situation is slowly worsening. Many 40+ blind people I know had to actually quit their job early, because shiny new interfaces were quicker then any accessibility could be. And suddenly, you wake up in the morning and realize that you are totally useless at work from now on. A very nice feeling. I know people who fell into depression. Imagine, you've worked for 20 years, and suddenly, you are useless because "innovation".
It's pretty silly in how society deals with different minorities. When it comes to race, gender, or sexual orientation, there's often a massive focus on being inclusive. When it comes to accessibility, the argument changes to "explain why we should spend money on x% of people".
Imagine the outrage, among progressives at least, if someone were to install automatic security doors that only work on white people. It mostly affects black people anyway and there aren't that many black people working for the company or being their customer, and changing the system would be expensive. I'm pretty sure you'd be under heavy fire from all kinds of different groups within society, and rightfully so.
Propose the same thing but talk about the (legally) blind, and suddenly the "waste of money" argument gets a lot fewer criticism. The law states that a certain minimal amount of accessibility is required, but even that is often implemented lacklusterly (useless wheelchair ramps, trees in the middle of tactile pavement).
I'm not so sure those shiny new interfaces are faster than accessibility can be, if people put in the effort. The spatial awareness and way of thinking many blind people are forced to develop is extremely underutilized. Yes, the blind are limited because they can't see, but that also means they're not restricted by the limits of displays. An immense amount of oxygen and nutrients is spent on the virtual cortex that becomes available for other purposes when you can't see (anymore); that brain power doesn't just go away, it enhances other sensory processing but also alters the way memory and the motor cortex operate. Call me naive, but I believe with the right tools and the right approach, blind people can have an advantage in many jobs. The same may also be true of deaf people, whose brains are forced to develop systems for recognising visual cues for their lack of hearing, though they'll be able to work most office jobs and navigate places on their own already.
It's so sad to see such unused potential go to waste and cause despair among the disabled. In a world where it's cheaper to take away incompliant tools than to make them accessible, I'm pessimistic for what the future will bring (i.e. the whole saga about that college that published years of recorded lectures without subtitles, and took them down for everyone when someone noticed they weren't compliant with accessibility requirements). Hopefully future legislation will force companies to make their products more accessible (in a way that taking down existing services/content is not an acceptable alternative) and hopefully some company will be able to unlock the potential of a human brain unrestricted by the requirement of visual cues, but I fear it's going to take a long time for that to happen.
Your writeup is amazing. I also want to mention that.... not just accessibility but general usability has also tanked recently, so even people without disabilities suffer. I have no idea how we got to this point but I feel like we are steadily devolving our interfaces and our technology to worse, dumber and harder-to-use variants.
It's simply astonishing how with all this computing power, we are just wasting it but aren't improving things meaningfully.
This is by far the most interesting analysis of this topic that I have read since a long time. Given your writing, I am assuming you know a bit or two about the issues, but you seem to not be directly affected too much. This would be great, as "external" people often do a lot of guesswork (instead of thinking) and end up in weird corners, albeit still having good intentions. What I want to say with that is that it is not very often that I hear people analyse the situation so on the point, without falling for pity or patronisation or other "traps". The first thing you mentioned is especially pressing. It turns out the vocal minorities indeed get what they want after a while, but what they forget is that there is only so much space for inclusive work, and if you overstate your case, you end up taking away the freedoms of other minority groups. While I understand the dynamics, and I really try to stay fair, this has led me to no longer care about sexual minority and gender problems. To me, they have way more comfort in our society then my group, and while I also want only the best for them, I am no longer capable to pbulicly support their cause because I am damaging my own by doing so. And, dont get me wrong, I am fully aware how harsh that might sound, and probably is. But I cant help myself.
I know absolutely nothing of the topic other than a few ARIA labels I applied a while back. I have a friend who is hard of hearing but that's about all the third hand experience I can recount. The most accessibility I need is a web page that renders text without Javascript. I do see a lot of companies and people in general lament accessibility, though, almost always because accessibility isn't valued and that irks me.
It must be very disheartening to be part of a minority that doesn't get the same pity and care that other do. I wouldn't call the life of sexual minorities simple, with backwards countries still putting extreme sentences on anyone outside the norm and western countries (like the USA) creeping back to encoding be-straight-or-get-out policies, but I do see a disproportionate amount of pity.
It's cheap and easy to change your company's flag to a rainbow a month every year. If you're creating media, just take a man out of a show and put in a woman, or make a little side note that they're trans, and boom, you're a forward thinking lightbearer here to teach us all about acceptance. When the going gets real tough, throw some money at a tax-deductible charity. With things like racism, it takes effort not to be race-inclusive.
Meanwhile, people struggling to survive or hold down jobs are seen as a burden because people need to put in real work to make the world compatible with them. Some places even put blind, deaf, and behaviorally challenged kids in the same "special school". It's all so extremely unfair! I can't imagine being in your position, and all the best I can tell you is that other minorities started from terrible positions as well, so don't blame them for the way you're treated. We need more progress, not infighting between the people that are mistreated!
However, there is reason to keep up hope; you never know what inclusion will be the next hype. I've seen an uptick with shows including deaf characters and sign language in Netflix shows, for example, which brings me hope that decent representation of disabilities will be next in popular media, which often pairs with progress within society.
I used to have high myopia and continuously increasing, which is also a large risk factor for retinal detachment. I think I originally learned about vision improvement through wearing weaker glasses on HN so I feel the obligation to share it since it has helped me manage (and even reduce) my myopia.
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[ 3.3 ms ] story [ 69.1 ms ] threadAndrew's old podcast is highly recommended, later episodes even reference his increasing blindness. https://www.kcrw.com/culture/shows/the-organist
Fully sighted, but I have been doing something vaguely similar for decades. As soon as I know an area decently well, or have taken at least one good look at a map, I can visualize the entire region’s roads and rotate it in my mind to find the best path (shortest time or least stress) from point A to point B. It’s fantastically handy to use in larger cities without having to pull out a map.
And as long as I have prominent landmarks to reference (mountains, etc.), I have a remarkably good sense of direction thanks to that mental model. Provided I have been fully aware of the scenery during my first trip anywhere, I can usually find my way back there from any other direction in which major roads exist. There is a fair bit of “hunting” to find the right road to go down, sure, but I rarely stray significantly from the correct direction.
Downside is that this is 100% reliant on sight to triangulate across geographical landmarks, I’ll grant you that. But it’s the mental model being used by the author that I’m surprised to see is so apparently similar.
At some point, I found that I was doing that with my "mental map" of reality as well. It's very handy indeed.
This article is a testament to the importance of focus and awareness. It seems like being blind forces you to be in the present and pay attention to every small signal that you can get from your environment.
This story was a good read and for the most part up lifting. It only really touches on the dark side of blindness, pun intended. When I was diagnosed I found solace in Jim Knipfel's accounts of dealing with RP, the most famous book likely being Slackjaw. Knipfel never pulled punches, he wrote about the raw harsh reality and squeezed black comedy out of it. While everyone around me was trying to be encouraging about my predicament, Knipfel gave validation to how I really felt about RP and could make me laugh about how fucked I was. If you want to see the other side of blindness I recommend Slackjaw, but be warned, it is basically the counter point to this story.
Most blind persons have sighted parents since most conditions are autosomal recessive. I myself recently learned that I’m an RP carrier. I mention this because from listening to persons who have struggled with vision loss, a lack of support, usually in the form of denial, from their sighted family has really hurt them. So if you might have children with an eye disease be sympathetic and really listen to them. Don’t minimize what they’re going through, but help them understand that there is still a whole lot that they can do.
My girlfriend and I both have visual impairments, although hers is much more significant (she's legally blind). Until recently, she refused to use a white cane or do orientation and mobility training. It took a lot of convincing to get her to learn how to use a screenreader. I used to recommend simple accessibility techniques to her (using bump dots on her microwave and stove, or asking her landlord for an accessible thermostat) and she'd say no because she was worried that she would be perceived as blind.
As a consequence she wasn't very independent and her lack of independence was causing conflict in our relationship.
Eventually there were enough incidents at work that her bosses made it really clear that they wanted her to use a white cane. Between that and me pushing her, she's finally accepted that it's time to start learning the skills and techniques that blind and visually impaired people use to be independent.
I think she's discovering now that there are so many techniques that people have discovered for adapting to vision loss - you just have to be willing to learn them.
Her parents are very nice people, but they never pushed her to be independent. I think there was a combination of denial and a perception that being blind is somehow shameful.
It's more than that, too, especially with progressive eye diseases. The path of least resistance, and the intuitive thing to do, is to rely on whatever vision you have left. At some point, though, your vision degrades so much that qualitatively different approaches— like ones that don't rely on any vision at all— will serve you much better. But even when that's true, switching to something radically different is scary and hard. So many people cling to navigation strategies that don't really work for them anymore much longer than they should.
> Most blind persons have sighted parents since most conditions are autosomal recessive [which can lead to a] lack of support
The inherited retinal disease that runs in my family is autosomal dominant, which means it has appeared all over my family. In fact, on my mom's side, it's appeared in every single generation for at least 5 or 6 generations, maybe more.
And tbh just having that context makes my own disease somewhat less scary for me. I've seen a lot of people in my family go blind, so I know what's happening to me and what's coming. I also know that it's not the end of the world, because blind people in my family have still had friends and hobbies and food and shelter everything else that's really essential in life!
It's definitely still scary, though.
> denial, from their sighted family
I think to some extent, parents just become desperately optimistic when they know that their kids have a struggle ahead. My mom (who is legally blind) has failed repeatedly failed to hear my sister (who shares her condition) about the progression of her own vision loss. In a lot of ways she does 'get it', of course. But there are also moments where she acts surprised by something she's already been told repeatedly, or where she expresses thoughts that are weirdly grasping at remote or fantastic possibilities, like that maybe it will only affect my sister in one eye, or that the progression will stop, or that a cure will be developed in time to stop the progression before my sister goes blind. For blind parents, I think a sense of guilt about passing on what has already been a horrifying trial for them to their own children can unfortunately motivate that same denial or wishful thinking.
I'm firmly in the denial camp and I justify it to myself by looking at all the amazing retinal repair, replacement, and implant studies in restoring vision in mice. The most promising are the implants that release a small molecule that can cause the internerons that remain to become light sensitive and fire. In the experimental mice this somewhat restores their behavior on navigation tasks. Of course I've been reading about these mouse studies for 20 years and so far going blind still means you remain blind.
> As someone with a seeming inability to internally visualize things (aphantasia) and a terrible sense of direction I'm really dreading trying to navigate (or do anything) when I go blind.
BIG SAME
I have never been much of a visualizer. I can't even draw a straight line. I have ADHD and I very easily get lost as it is. I have a feeling that blind navigation may end up being harder for me than it is for many. Ugh.
Imagine the outrage, among progressives at least, if someone were to install automatic security doors that only work on white people. It mostly affects black people anyway and there aren't that many black people working for the company or being their customer, and changing the system would be expensive. I'm pretty sure you'd be under heavy fire from all kinds of different groups within society, and rightfully so.
Propose the same thing but talk about the (legally) blind, and suddenly the "waste of money" argument gets a lot fewer criticism. The law states that a certain minimal amount of accessibility is required, but even that is often implemented lacklusterly (useless wheelchair ramps, trees in the middle of tactile pavement).
I'm not so sure those shiny new interfaces are faster than accessibility can be, if people put in the effort. The spatial awareness and way of thinking many blind people are forced to develop is extremely underutilized. Yes, the blind are limited because they can't see, but that also means they're not restricted by the limits of displays. An immense amount of oxygen and nutrients is spent on the virtual cortex that becomes available for other purposes when you can't see (anymore); that brain power doesn't just go away, it enhances other sensory processing but also alters the way memory and the motor cortex operate. Call me naive, but I believe with the right tools and the right approach, blind people can have an advantage in many jobs. The same may also be true of deaf people, whose brains are forced to develop systems for recognising visual cues for their lack of hearing, though they'll be able to work most office jobs and navigate places on their own already.
It's so sad to see such unused potential go to waste and cause despair among the disabled. In a world where it's cheaper to take away incompliant tools than to make them accessible, I'm pessimistic for what the future will bring (i.e. the whole saga about that college that published years of recorded lectures without subtitles, and took them down for everyone when someone noticed they weren't compliant with accessibility requirements). Hopefully future legislation will force companies to make their products more accessible (in a way that taking down existing services/content is not an acceptable alternative) and hopefully some company will be able to unlock the potential of a human brain unrestricted by the requirement of visual cues, but I fear it's going to take a long time for that to happen.
It's simply astonishing how with all this computing power, we are just wasting it but aren't improving things meaningfully.
It must be very disheartening to be part of a minority that doesn't get the same pity and care that other do. I wouldn't call the life of sexual minorities simple, with backwards countries still putting extreme sentences on anyone outside the norm and western countries (like the USA) creeping back to encoding be-straight-or-get-out policies, but I do see a disproportionate amount of pity.
It's cheap and easy to change your company's flag to a rainbow a month every year. If you're creating media, just take a man out of a show and put in a woman, or make a little side note that they're trans, and boom, you're a forward thinking lightbearer here to teach us all about acceptance. When the going gets real tough, throw some money at a tax-deductible charity. With things like racism, it takes effort not to be race-inclusive.
Meanwhile, people struggling to survive or hold down jobs are seen as a burden because people need to put in real work to make the world compatible with them. Some places even put blind, deaf, and behaviorally challenged kids in the same "special school". It's all so extremely unfair! I can't imagine being in your position, and all the best I can tell you is that other minorities started from terrible positions as well, so don't blame them for the way you're treated. We need more progress, not infighting between the people that are mistreated!
However, there is reason to keep up hope; you never know what inclusion will be the next hype. I've seen an uptick with shows including deaf characters and sign language in Netflix shows, for example, which brings me hope that decent representation of disabilities will be next in popular media, which often pairs with progress within society.
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