Losing Sight
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Also, it has shown me how hard I make their lives when I don't design with accessibility in mind. I didn't use to think that anyone with vision problems used the internet much, but it turns out not only they do, but they do the exact same things I do. This is a good tool for accommodating visually impaired people:
https://khan.github.io/tota11y/
I guess I'm saying don't be a jerk, be mindful of sight-impaired people when designing your products.
I'd love to discuss their perception and thoughts about everything.
ps: this is a great tool you linked in.
Get me on IM! I have an awesome new lib to tell you about.
What other tools does your coworkers use?
They also use iPhones, as they complain that Android's accessibility is bad. I thought it was just the typical "I like what I'm used to", until I tried to use it on mine to help one of my coworkers with it, and he was right. It was unusable (taps wouldn't register, gestures wouldn't register, they were hard to do, etc). I was ready to throw my damn phone in the trash after ten minutes, I can't imagine having to use a phone like that all day.
At a job I had five years back, new US government standards for handicapped accessibility came down, and I was asked pretty explicitly to do the absolute minimum necessary to make our web app technically comply with the letter of the rule. This essentially amounted to adding one- or two-word alt-text tags to image buttons, and nothing else. I wasn't happy with that, and I investigated to see if I could do better, but really doing it right would have taken weeks or months of work and a lot of inter-department cooperation, and I was just a contractor and the decision had been made many levels above me, so ultimately I had to do what was asked and move on to my next task. :(
So I guess my point is, don't assume that just having accessibility standards is enough, when there are people in the pipeline who view them as an annoyance. Whether you're a manager or a low-level dev, do what you can--more than I did--to make your coworkers understand that this stuff actually matters.
I was on a team designing a mobile app and we sometimes had confusing conversations with the project-manager, at some point he told us he was partially color-blind. Specifically in this image: http://i.imgur.com/jJIWv9X.jpg , all three pics look exactly the same to him. This app was basically a monitoring app using the well-known traffic colors of green=OK, orange/yellow=UhOhWarning, red=BigProblemHere.
That incident made us take extra care in designing the app such that we never conveyed info solely with the colors.
Agreed. Or name your javascript tool the same thing as the most popular screen reader.
JAWS: https://news.ycombinator.com/item?id=10005415
JAWS: http://www.freedomscientific.com/Products/Blindness/JAWS
They even preserved the all caps. Now when vision impaired people search for their screen reader, they get results for a javascript framework, since they're both in the context of software as far as a search engine is concerned.
I always design with accessibility in mind, but I feel like there are more visceral complications than having to add a little extra context to a web search.
Almost everyone in development has encountered unfortunate name collisions that make what you're looking for hard to find... it's a pretty common inconvenience. Usually you just refine the query, like: "JAWS screenreader." The first result takes you where you probably intended to go, and it's at most 1-2 keystrokes away.
I think the real lesson here is to design inclusively. HTML has a lot of handy attributes to augment content; knowing & implementing the essentials means someone can follow the core flow of your site/application without relying on visual cues. And for the pragmatists... it has the added benefit of self-documenting and increasing semantic conformity in your markup.
I had to listen very carefully for the things I was interested in, and then slowly navigate my way through the UI tree. If my mind wandered I became totally lost.
There are things around you which are plain as day, but which you will never see, because you will never think to look at them.
But I'd like to know if you're diffentiating between the actual bandwidth of the eye's ability to see light (I.e. Peripheral vision is fairly narrow) vs the amount of thought and memory that can be induced in the mind based on the (limited) amount of light/images/info coming in through the vision.
I simultaneously admire the author's fortitude and am hit by powerful worry and frustration that facing the non-stop challenges of T1D for so many years can result in such outcomes — and often as a result of one's own imperfections facing those challenges.
The guilt the author describes when realizing she'd go blind had to be unbearable. Man I hope to work hard enough and be lucky enough to not face that.
There's some evidence excessive alcohol consumption is associated with higher-than-normal incidences of diabetic retinopathy, though I've read studies that say there's no effect if alcohol consumption is moderate. Some studies say cannabis has a preventive effect.
I can't vouch for either of these either way (i.e. do your own research):
But I've heard of people keeping an even closer watch than typical. Continuous monitoring and pump to try to keep the glucose levels very even - the way they are for a non-diabetic.
Also some people try to keep glucose levels somewhat lower than recommended under the assumption that the spikes cause harm, so starting with a lower baseline is better. (Of course don't overdo it.)
Even if you don't believe this, just give it a try for a month along with your regular monitoring and insulin intake.
And a lot of angry arguments and shouting too from people with various levels of expertise.
I know almost nothing on the topic, but my guess is that the key is to have a stable and low intake of slow carbohydrates, avoid fast carbohydrates, but most importantly - you should actually like the food so that you can stick to the diet.
I pretty much have accepted that even if I do all the sensible things I might still end up in a wheelchair but the thought of losing my sight is still far more terrifying.
On the other hand, we do have ample research that disproves or undermines most of the common sense advice (e.g. eye rest every hour, eye exercise, keeping fit, etc). Conflicting schools of traditional medicine do not help as well: you could get the opposite opinion on laser treatment (for retina) and scleroplasty depending on whether the specialist is from the US or Europe.
My hope is platforms like HealthKit will enable massive new research into this. Alternatively, cyber-eyes.
Now I'm hoping for cyber-eyes before I go blind.
It's a tough challenge and we hear all sorts of stories about problems that arise when people stop properly self-managing for whatever reason.
And I've worked on other healthcare projects and it really does seem like simple compliance -- getting people to do what they've been medically advised to do -- is a huge problem. Like, there are diseases and medical issues that are mostly solved. Except for patient compliance.
For those who can't imagine anything worse than losing your sight, I can assure you that you're wrong. It's no picnic, but I can imagine much worse predicaments. Not having to look at yourself in the mirror anymore can actually be liberating.
Frankly, the toughest part about being blind is the stigma around it. I've lost jobs because my blindness made people uncomfortable. I've been turned away from job interviews because the interviewer didn't think I could do the job without giving me a chance to prove otherwise. Most people are great about it and are very empathetic. But there's still the occasional person who avoids me like the plague.
As for my type 1 son, I hope I provide enough of a dose of reality for him to stay on top of his blood sugar.
It's hard for me to believe this, but I don't want to believe you.
>For those who can't imagine anything worse than losing your sight
I don't think it would be the worst, but I have trouble writing code as it is; don't kid yourself, you're a bad ass.
>Not having to look at yourself in the mirror anymore can actually be liberating.
I solved this by ignoring the mirror while in the bathroom even though I can see. It just seems to cause vanity.
As for your son, I wish you the best. I had a type 1 roommate in college, and he had some 'interesting' episodes that caused me great concern (i.e. failing to maintain awareness of his glucose levels). Keeping active skiing, hiking, and fishing seemed to help him a bunch.
Were you worried about passing it (RP) on? Apologies if this too personal for HN, I am just curious.
I know it's a hard, complex set of problems, but it really does seem that everyone essentially concludes "well, we're not there yet", and that's a real shame.
My biggest fear for my job is injuring my hands irreparably as they are really my bread and butter as a programmer. I invest heavily in quality keyboards and personal tracking software (mostly self-written) to keep tabs on not going overboard and triggering the onset of RSI or other health issues related to the hand and wrist.
Locked-in syndrome - A medical condition in which the body (and most of the facial muscles) are completely paralyzed but consciousness remains. Only the ability to perform certain eye movements is preserved.
It happens suddenly, so imagine laying there screaming inside and no one can hear you.
One-upmanship like this never helps others feel better.
As I'm personally not trying to outdo a competitor to gain a feeling of superiority over that competitor.
There is only a contrast here, no personal superiority.
But the breadth and depth of his understanding of computers and software is amazing, and the code that he writes is some of the best I've seen: Very clear, very direct and unsullied by useless abstraction, and easy to maintain.
Accessibility of development environments and tools is another issue. For example, Xamarin Studio is totally off-limits because it uses GTK, and GTK is inaccessible on Windows and Mac.
Shit. Is there a bug report for this? (Upstream, with GTK)
https://bugzilla.gnome.org/show_bug.cgi?id=303304
And this mailing list post from a few years ago provides a more up-to-date overview of the Windows accessibility APIs:
https://mail.gnome.org/archives/gtk-devel-list/2012-April/ms...
Making GTK accessible on Windows or Mac, never mind both, would be a lot of work.
Ouch. I suppose carb ratios weren't so big back then (admittedly, it wasn't for me either, being diagnosed in the late '90s). But I still measured myself so many times a day that the pharmacist thought I was scamming the PBS for test strips somehow (our subsidized medicines scheme here in .au). As a curious teenager I was able to develop a mental picture of what my BSL did when I ate certain foods after a few months of 10+ measurements per day. So, even if I didn't have an actual carb ratio figured out, I "knew" by trial and error how much insulin different foods needed.
Even so, I've fallen off the wagon a few times. I got so used to having specialists and doctors tell me what a great job I was doing on my own, I had an embarrassingly long period between specialists. To the extent that I stayed on humulin for quite a few years longer than I otherwise would have if I'd seen a specialist (newer insulins are way faster-acting and easier to live with).
This story has certainly prompted me to re-evaluate where I am now; complacency is a silent killer.
http://www.hanselman.com/blog/CategoryView.aspx?category=Dia...
My mom suffered from the same ailment a few years later and it appears that the treatment of choice is now an eye injection. It seems to me that the field is moving very fast, and the author of the article has been very unlucky not to have this just a few years later. Here's to hoping that we find a stable non-invasive cure in the very near future.
I can imagine doing the same thing myself - and have often skipped prescription medicines. But if I'd been told the risks (not exaggerated unquantified risks) then I surely never would.
I remember some of these feelings; I've had an eye condition since I was 5 that gave me 20/200 vision at one point, and included various unpleasant treatments; fortunately for many years I've just needed to take eyedrops once a day and that's sufficient.
When I left home to go to college, I needed to find a specialist somewhere near school, and see them a few times a year to be sure things were under control. Think I handled that well? Nope, not really, but (to make a long story short) I was lucky that nothing irrevocable happened as a result.
At that age, I was aware that poor decisions, even non-decisions (ignoring something that needed to be done) could have severe real-life consequences, but all that still felt unreal, and even now I sort of feel like rolling my eyes at myself for saying it. What kind of person writes phrases like "severe real-life consequences", huh?
It's an age for breaking free of constraints, and trading in external rules for internal ones (through some amount of trial & error); that's just a much more dangerous process for people (like the author at that time, and myself to a lesser extent) who are leading lives with lower error tolerances.
I am a recently diagnosed type 1 diabetic, hospitalised on my 29th birthday earlier this year. Not having received it as a child it is difficult for me to add to the post, but I do think that I can add some value by elaborating on exactly how tricky glucose monitoring and insulin dosages are.
Type 1 diabetes is uncommon in comparison to type 2 diabetes, if I remember the numbers correctly, it is about 10% of diabetics that have type 1. It is an autoimmune disease, meaning that your immune system, for some as-of-yet unknown reason, attacks your pancreas and destroys your ability to produce insulin. There is no medication or treatment other than injections of insulin into your bloodstream for the rest of your life. Personally, I had deteriorating eye sight over the course of several months and finally a very sudden urge to drink large amounts of sweet drinks and water.
As a type 1 diabetic you need to monitor your glucose level several times every day. The most common way to do so is to prick your finger and put a drop of blood on a one-use testing strip that goes with a digital monitor [1]. This is remarkably easy and you get instant results. It is however a relatively new invention and prior to this you had methods like urine test strips that gave far less immediate and accurate results. The most modern monitoring available would be continuous glucose monitors. They are essentially a needle with a sensor attached to a patch that you attach to your skin. This sensor then sends a signal to a device that you carry with you and that can warn you if your values are too high or too low. It is however not widely available in all countries, partially due to the cost.
[1]: https://en.wikipedia.org/wiki/Blood_glucose_monitoring
So, about dosages, how do you do it? Well, every person is slightly different, but there are tricks. You can use the same portion size of carbohydrates every day and keep your dosages fixed, or you can attempt to guess the amount of carbohydrates and adjust the dosages accordingly. What happens if you overdose? Nothing immediate, but over the next few hours or so you will start to feel lethargic, sweating, act "drunk", and in the end loose conciousness unless you compensate by taking in additional carbohydrates. As you grow older you may loose these signals and falling too low becomes increasingly risky. What happens if you underdose? Nothing immediate, but much much less immediate than with an overdose. You will have high levels of glucose in your system which gradually will wreak havoc on your eyes, feet, kidneys, etc., there will be consequences further down the line. This is one reason why getting insurance coverage as a type 1 diabetic is almost futile as pretty much anything could arguably be caused by your diabetes.
To add to all of this your dosages will vary due to what kind of food you are eating, carbohydrates from chocolate acts slower than pure sugar due to it being coated in fat that slows down the digestion. If you are sick your body is likely to be much more difficult to read and your dosages may change radically. Add to this that your immune system is significantly weaker as a type 1 diabetic. Dosages also vary depending on whether or not you do physical exercise, your stress levels, and more.
I really want a book describing all of this to me from the bottom up, molecular chemistry and all, so that I can better understand my own disease. For now I am gradually building a mental model from experience and picking up bits of pieces by reading.
There is hope in stem cell research and computerised systems that automatically read your glucose levels and inject an appropriate amount of insulin. But we are not there yet.
Do you mean that insurance won't cover things related to type 1 diabetes?
[1]: https://en.wikipedia.org/wiki/Complications_of_diabetes_mell...
I want to reach out to you regarding what you've said. Mind hitting me back?! chensteven[at]outlook[dot]com
Everyone does some version of that in their youth, I think. I did, for sure. But fortunately, my gotchas have all been relatively minor.
My vision is deteriorating, though. However, it's mostly cataracts and lens hardening. So I'll get artificial lenses, and probably won't need glasses anymore. Or I might end up blind, if something/someone screws up.
So it goes, I guess.
But if you do have issues to work around -- e.g., problems with the original capsule holding the natural lens, or other inflammation/etc. to avoid, there are even now a handful of different ways to attach an artificial lens that also work well; I have artificial lens in the original capsule, and the other that basically clipped onto the iris.
You'll probably need glasses anyway (for standard artificial lenses, you will) but possibly only for reading.
I use progressive lenses in my glasses (no more bifocals, these days); and generally reading, driving, etc. are just fine -- I don't think about it.
In my case, it's just age. As far as I know.
Seems like the kind of wearable that could have a profound impact on peoples lives if done properly.
http://mobile.the-scientist.com/article/42863/eye-stem-cell-...