Comment by jesterswilde

Comment by jesterswilde a day ago

19 replies

I am blind, it was degenerative so it sounds different than what your kid has.

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.

Moru 17 hours ago

My daughter had a few disabled children in the same group during her kindergarden/school years. No more than one or two at the same time. It was always started with a proper explanation of the handicap and the problems and how to handle the situations. And after that there was just natural playing with eachother in the group. Children are wonderful at learning, accepting and adapting. It just takes a good teacher to lead them on the right path from the start.

  • DanielleMolloy 16 hours ago

    I see the necessity good intentions behind it, but also believe this singling out can lead to developing this sense of shame the user mentioned.

    • zdragnar 15 hours ago

      Everything has failure modes. The idea, I think, is to get it out in the open up front, after which it is just the new normal that everyone accepts, rather than drag out discovering implications of the difference again and again as they uncover them.

    • jesterswilde 11 hours ago

      The shame was my own issue of going from sighted to blind. A disabled person is singularly different than most other folks (although people with major disabilities are ~16% of the population.) The momentary discomfort of being singled out is just the price of admission and better than the alternative of people not understanding out how interacting with us or choosing not to.

PaulRobinson 20 hours ago

Without wishing to minimise the very real, very serious consequences of your blindness, your points sound familiar to somebody who suffers from severe anxiety.

People being overly protective makes things more confusing. Technology (including many medications), often don't really deal with the root cause, but some things do help (like talking therapy and some meds). Independence can be challenging, going outside can be challenging, going outside can be a deeply uncomfortable endeavour, and yet getting on with life is important and so we keep moving.

I'm sure blindness sucks in ways I can't easily empathise with as a sighted person, and so it's not anything close to a reasonable metaphor, but I feel I empathise with a sense of discomfort, anxiety and confusion. I never thought it would be the same. Thank you for sharing, and keep moving.

  • jesterswilde 11 hours ago

    No worries, I get where you're comin from. Nobody can truly understand what anyone else is goin through and we all have to use ourselves as proxies.

tomcam 21 hours ago

I have a couple of handicapped kids and definitely vouch for #1. When the first one was born, my wife agonized about whether we should spoil that child because of the handicap. My answer was resounding no. We would simply deal with it, and the kid would have to understand that there were certain limitations. This was tough for my wife, but she acceded. It worked out well.

lhamil64 15 hours ago

I've also been legally blind since birth, although I have a decent amount of usable vision. I'm not sure I 100% agree with your #2 statement.

  • jesterswilde 11 hours ago

    That's completely fair. Hopefully you've had technology help you. If so, more power to you.

    The main crux of #2, for me, is that there is many technologies people push or suggest to me. They are often short lived, or buggy, or help in a handful of cases but not enough for me to rely on it and make it part of my patterns.

    What tech have you found reliable and beneficial? Specifically I'm interested in new tech that has actually panned out in your estimation.

DanielleMolloy 17 hours ago

Thank you for sharing. I'm in research that is somewhat attached to the technology side and find 2) particularly interesting.

Did you ever look into electrotactile tongue display units? What is your opinion?

I'm curious about what neuralink will present soon. Musk mentioned "atari graphics" recently, so they probably will for now only focus on generating phosphene-based crude bitmaps in the primary visual cortex (which has been demonstrated to work years ago). I can't know what they are up to and believe / expect they are internally more ambitious about stimulating the higher visual system. But if it boils down to the phosphene bitmaps I expect TDUs (which have FDA approval, already seem to work well and don't require invasive surgery...) to become part of the discussion.

  • jesterswilde 11 hours ago

    I haven't ever even heard of electrotactile tongue display units. Got a link?

    I am generally more optimistic about technology if it's generally beneficial and not targeted at blind folks. If we just happen to ambiently benefit. Self driving cars and things like Neuralink fall into these categories.

    Blind folks are a small percentage of the population and we don't have a lot of money. So the incentives aren't usually there to help us.

    • DanielleMolloy 9 hours ago

      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.

  • tway_GdBRwW 15 hours ago

    I guess that might depend on how much you trust Musk.

    • DanielleMolloy 14 hours ago

      I trust Musks ability to attract stupid money and hype towards highly beneficial technology and research goals.

gautamcgoel 21 hours ago

Thanks for sharing this perspective, it was very interesting.

tkuraku 16 hours ago

Thanks for your comment. That is a helpful perspective.

matsemann 17 hours ago

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?

  • jesterswilde 11 hours ago

    Public transit is fantastic for my independence. Most other countries I've been to grant me a greater degree of freedom than I have here in the US. NYC is decent for this. Stop lights and subways help me a lot.

    Of all the cities I've been to, Shanghai is where I've had the most independence (Tokyo and Osaka are tied for second.) I could often travel fully underground or using skyways. Subways everywhere that were easy to navigate. They had the blind lines on the ground, though they did sometimes run me into trees and parked bikes.

  • zdragnar 14 hours ago

    Yes, if you can afford it. Bussing is feasible, and some communities (not nearly enough) are good about providing or have non-profits that operate shuttles for those in need as well.

    A typical suburb will often have apartments near retail areas, but residential districts without alternate transit options may as well be deep rural if your only option is walking through intersections without traffic lights.