3 ms·

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 thi

by User23 3y ago

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.

throwaway_htbb 3y ago
This is so true. 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.
pxc 3y ago
> 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.

by User23 3y ago

throwaway_htbb 3y ago

This is so true. 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.

pxc 3y ago

> 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.