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| The brand name I know is BrainPort, which gives you a 20x20 matrix with three intensity values (on, mid, off) on your tongue:
https://www.wicab.com/brainport-vision-pro I found a few others while digging to find this again. I can't say how well the translation of the picture into these matrices works, but expect these devices will also benefit from the research into the phosphene stimulation matrices, which (to the best of my current knowledge) have the same pixel matrix resolutions and thus the same problems to solve. A substantial part of the research aims at extracting meaningful pixel matrices from regular cluttered visual scenes through deep learning. |
| Ref point 3 about high speed metal, moving to a place where things are in walking distance / less car centric could perhaps be a way to better enable independence? |
| That is incredible to read. It's one of the things which makes you stop thinking about all the awful things in the world and realise just how incredible modern science and medicine is. |
| I once read that some people who are blind from an early age, as they get older, start to click their tongue, but often those around them (parents, siblings, etc.) will discourage them. Thing is, that clicking can actually be used to develop a type of vision that operates similarly to echo location in cetaceans (whales, dolphins, etc.) – it comes about because the child realizes that if they make a sharp sound, they can begin to orient themselves with the reflections of the sound waves. After all, vision is in the brain; the eyes are just the sensors. Point being, if your son starts making clicking sounds with his tongue, you likely won't want to discourage that. And on the flip, teaching him to click may provide a means of developing his vision in an alternative way.
Edit: Here's a Pubmed article on a study where blind and sighted people were trained to echolocate: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8171922/ |
| Learning to understand the world around you via clicking isn't a natural or easy thing to do. I can't do it personally but have looked into it. For me the benefits didn't seem worth the time investment (plus I was older when I looked into it.)
Learning to click to understand what is around you is, IMO, a viable thing to look into for your kid and decide if you want to undertake that training. Daniel Kish is the name of the guy most famous for it and would be a decent place to start looking. An amusing anecdote and a bit of blind throwing shade a blind: https://youtu.be/u-7w3m7fhl4?t=326 |
| Hopefully this will get you started in the right direction:
Braille Institute of America: Understanding vision loss can be challenging — and scary. It doesn’t have to be. Explore resources about symptoms & conditions, and get connected to ways we can help. https://www.brailleinstitute.org/ American Foundation for The Blind: Since its inception, the American Foundation for the Blind (AFB) has served as the leading source of information and research encompassing blindness and low vision in the United States. https://www.afb.org/blindness-and-low-vision Technology Tools for Children with Low Vision: For children who are visually impaired, technology can play a big role in reaching developmental milestones and closing learning gaps. https://www.aao.org/eye-health/tips-prevention/technology-ap... I work as an accessibility engineer so I work with and help people with disabilities every day. Let me know if you need any more resources and I'd be happy to send more. |
| > I worry that so much of these “communities” exist as a cope for a shitty lot in life
I mean... that's what they are, in some ways? I don't see how coping is a bad thing? |
| The idea that people who advocate for harm reduction lack empathy itself lacks empathy.
I would 100% support a mothers right to choose, and if that meant that any one of us did not exist because of it, so much the better. A life not lived is guaranteed harm/suffering that didn't happen. This is consistent with negative utilitarianism, which is a better moral or ethical framework than any other. Also consistent with Jainism, which is the only religion in the world that means it when it preaches non violence (but is down with suicide) A whole lot of the world believes in reincarnation (~1 billion people), and have advocated for positions similar to this in their extensive bodies of philosophies for millennia. The idea that we are not to help someone on their way to the next, hopefully better life is just as silly sounding to them as it is for me to go to the 1 billion+ abrahamites around the world and tell them that heaven/hell isn't real. Simply admitting that some conditions make life not really worth living for a lot of people is not worth getting worked up over, especially when it bears out in data that blindness definitely does make people want to choose that option. I can't always blame them: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4624868/ Quoting the abstract "Mortality was significantly increased in the visually impaired (SMR = 1.3; 95% CI 1.07–1.61), but in gender-stratified analyses the increase only affected males (1.34; 95% CI = 1.06–1.70) and not females (1.24; 95% CI 0.82–1.88)" Most of the lack of increase in Mortality is explained by women trying and failing to commit suicide far more than men. I'm sure they tried more often too, but this was not explored in the paper. From https://jamanetwork.com/journals/jamanetworkopen/fullarticle... (2024, systemic review/meta analysis): "The findings of this systematic review and meta-analysis support the association between visual impairment and increased risk of suicidal tendencies. The risk differed by age group, with a pronounced risk observed among adolescents." It is unpalatable to talk in such a direct way about these things, but like a lawyer who has the benefit of distance away from the problem of a client, I, fortunately am not blind, and this is sometimes a good thing. Insular communities can and often do have bad takes and need the rest of the world to hold them accountable. |
| https://www.sankaranethralaya.org/
The one in Chennai is roughly 40 years old. They should have a "appointment booking" available right there on the landing page. They perform full-on keratoplasty a.k.a Corneal Transplant. But like the other poster said, please consult your pediatrician about other options as You are dealing with a toddler. Best wishes and hugs. wishing you and your wife all the very best. |
| Programming/IT work is one of the only professional areas in which we can really shine, so it's not surprising there's a lot of us :) |
| You may be interested to search historic HN threads. Iirc, there are at least a few posters who are (substantially) visually impaired on here who share incredibly insightful information. |
| There are whole communities with lots of great info. Two that I know of personally (for older kids):
Perkins School for the Blind https://www.perkins.org/ Texas School for the Blind and Visually Impared https://www.tsbvi.edu/ There might be a school closer to you. I would not hesitate to reach out to them… They’ll point you to other groups in your community. |
| The blind communities I'm involved in don't have any such separatist bent that I'm aware of. If anything, perhaps we go too far in insisting on assimilating into the mainstream. |
| I don't have any resources specific for blindness, though I know a few people who are blind and still have a great quality of life. I have my thoughts on the "disability is not a disadvantage, just another way of being" crowd because that doesn't work for my own situation, but for blindness, I can see the point they're making.
There's that old study that looked at what kind of parents give their children the best start and success in life, and after some factor analysis, the single most important attribute was "loving". Disability doesn't change that. You might find Matt Might (of "illustrated guide to a PhD" fame) comforting on the topic of having a disabled child in general: https://matt.might.net/articles/tenure (despite the title this post is not primarily about tenure). |
| There's a Google Glass reseller + app maker called Envision, which lets you use Google Glass's camera and speaker to have the computer explain what you're looking at.
https://shop.letsenvision.com/products/glasses-home
https://www.businessinsider.com/envision-glasses-chatgpt-goo... |
| Not sure why this is downvoted. I know your son is just a baby but my whole point in posting this is to illustrate that with today's tech, he won't have to grow up being less independent than other people.
One of my friends even came up with a UX that could, if built into smartglasses, someday allow blind people to drive: https://www.cs.columbia.edu/~brian/projects/rad.html I feel like it's nice to give people hope |
| The comment read to me as disrespectfully implying to check with a pediatrician as if OP hadn't already. But ironically... perhaps that was my own disrespectful reading of the comment. |
I have a few pieces of advice. This is more about my own upbringing, so don't take any of it as an accusation towards you.
1) Don't hide things about their condition or prospects. I grew up in a very loving home. However, my parents found out I was going blind when I was ~8, I didn't find out until I was 13. My mother wanted to protect me from 'being the blind kid'. But I was. Not knowing made everything so much harder and more confusing.
2) Don't rely too much on technology. Stick and dog are the best tools blind people have. Everything else, in my opinion, is a flash in the pan and won't have long term support. Not made by blind people and with minimal consulting for them. Like what a sighted person thinks a blind person needs after closing their eyes and walking around their house for a few minutes. (Screen readers are useful, I'm not talking about those.)
For a piece of tech I was excited for and is now dystopian: https://spectrum.ieee.org/bionic-eye-obsolete
3) Foster independence. The world is not made for us. It's also full of high speed metal deathtraps. The easiest thing to do is stay inside where I know where everything is. Even walking to the grocery store is a deeply uncomfortable endeavor. But I need to do it. I need to be able to live with that discomfort and not let it dissuade me from living the most human life I can.
The blind cane is very valuable. It took me too long to accept blindness as an identity, get over the shame, and start using it. I lost a lot of time to that.
Blindness sucks in every conceivable way. It affects every part of ones life. But I had a good childhood and I have a good life. All things considered, I'm extremely lucky for the circumstances of my birth because of the family I was born into. You can't take away the blindness but you can still give them a wonderful life.