escapologybb

Thank you, that is now going round in my head on a continuous loop!

I pretty much completely agree with the content of what you said as well.

I absolutely loved Terry Pratchett Discworld, make me laugh at some real bad times in my life.

I'm currently listening to thief of time which is weirdly good, didn't like it at first but it really is good. That and the last continent.

Obviously this is all secondary to the Night Watch, Sam Vimes is definitely on Hacker News somewhere, right? :-)

edited to add: over the past few weeks Apple and their accessibility approach has come up a few times on HN, and when I responded there have been so many questions that I really really wanted to answer. However, not had the energy to be able to respond in a timely manner and certainly not quickly enough and set the article is still on the front page of HN. Basically because quadriplegia.

So I know that there are are a lot of questions about use my computer, and that's largely because The people on HN are genuinely and wonderfully curious.

The question that seems to fascinate able-bodied engineers goes something like this: "imagine coming home and finding somebody had removed every switch, button and lever from every device in your environment; What would you do?" That's the question I had to answer before I could get to where I don't get a job and have to start my own company as a result!

So my question is how best do people think I should share this information? Blog post, Twitter thread (eww) or messenger pigeon?

I would just like to say that there isn't a company on the planet making consumer electronics that leans in harder than Apple does, as a quadriplegic I can get an able-bodied monkey to take my new iShiny out-of-the-box and from then on I can do everything you can do on that device.

They really are world leaders at this stuff, I can use my right index finger and my mouth and with just that I can use Apple products to run my own company and talk to people on HN (you know, the important stuff!). ---

My money doesn't seem to fit in any of the slots on my computer...

Apple just keeps knocking it out of the park and into a completely new sports metaphor assistive technology provision, they really do. Any measure, I'm a massive nerd/geek/hacker and I really have looked into alternatives both in the open source and proprietary basis and nobody at all is assistive technology as well as at all right now.

It really is as simple as whenever I have a new iShiny, I pounds on the nearest able-bodied monkey and get them to take total box and connected to Wi-Fi and then it's all me. From then on I don't need any more able-bodied assistance whatsoever with setting up the new device, it's awesome. And whilst it's been a few months, the last time I looked known of the other major players were able to come anywhere close to this level of frictionless setup for quadriplegics like me.

ALSO! ALSO! Let's not forget that this isn't some crappy subset of functions that quadriplegics have to settle for whilst everybody else gets the full fat version of the software. Nope, with very few exceptions pretty much anything an able-bodied person can do with their iShiny I'll be able to do as well. Just a little slower.

Apple, and specifically their approach to accessibility is only one of many reasons I'm able to work, see my family and generally engage with society as well as I currently do.

Also, I quite like the term cripple, differently abled or on a good day Stuart. WTF cares what label you give me, I am much more interested in whether this laptop enables me to do the shopping independently and see my Nieces without having to check with an able-bodied person first.

If anybody from the project is reading this, could you tell me where I should send the application, entrance form, fee or even straight up bribes to get my brain and this technology smushed together please?

I'm quadriplegic and since lockdown began last March I've not left this bed once. That's not hyperbole, I literally mean that I haven't left the spot in this bed I'm in right now, writing this comment to you all.

So Yeah, connecting with the world like this is something I need to be a part of. I really don't have words to describe how life changing this would be.

Feels weird to say thank you, but the kind words make me feel better. thank you.

You will understand why your comment makes me feel deeply uncomfortable and incredibly proudTo hear that someone of my peers.

My partner says (and I think she is totally right) that I have major trouble when I have more than one emotion at the same time!

Using my computer.

I had to give up my degree in CompSci because I was becoming quadriplegic beginning in the early 2000's, And was unable to type. I then spent a decade working out how to become a computer scientist/robotic/terrible drone flyer. If that does not sound difficult, imagine coming home from work and finding out every single light switch, but, lever and key from your keyboard been removed. What do you do? I asked, you are also in pain.

Also, at the time there was no academic structure available to help, so I had to do it myself.

(I find this comment incredibly hard to write because I am a northern man from the UK and emotion is not something we do easily, this feels like boasting to me even though it answers your question. I am writing it Everybody else who might be struggling with some insurmountable problem with a very simple point: Do. Not. Give. Up.

Not ever, and you will either achieve your goal or die trying. You will almost certainly surprise yourself though.)

EditedTo Add: well, that was meant to be a minor comment and request for pointers but turned into somewhat of a rant. My apologies HMN, my apologies. This kind of dashboard really does have the possibility of reducing the overdoses I am subjecting amongst any number of other mistakes brought about by lack of clear and understandable documentation. And once we have fixed it for me, well from THEREON IS WHERE WE TAKE OVER THE WORLD!

On a slightly related note, does anybody remember that about a year or so ago somebody posted his "Personal Analytics Dashboard" I think he called it. Basically it detailed every aspect of his life. it was things like heart rate, steps walked, miles run, cycles cycled along with all manner of other nutritional input.

The thing that marked it out for me was that it took all those desperate threads of information and display them in one easy to understand and beautiful layout. But I cannot for the life of me find it!

At the moment I want to get to the state that when one of the nurses comes on duty, she can get the iPad out of the server cupboard (after first pressing her flic button to login) and see on one or two pages things like but not limited to:

* Is the catheter turn on or off

* What is the bosses current heart rate (BPM)

* What is today's resting heart rate and how does it fit in over the week, the month and the year

* Which of the doors and windows are open and are they locked or not

* Did the boss get into his wheelchair today, and if so for how long and how far did he travel

* How many doses of his medication has he had today, and how many does that leave him with for the rest of the day

* Have there been any incidences of Autononmic Dysreflexia[1] or any other life-threatening shenanigans other parts of the team will need to know about

And on and on and on, so it would need to be expandable. It may be possible to skin home assistance with something simple enough but I am not a designer.

I've lots of this data coming in already from lots of different sensors, I am however just struggling with a way of turning those data into information that non-technical users will not be put off by. Because if they are put off by it then they will not use the system, and as this is going to be one of the systems monitoring medication and my health et cetera I would really like them to use. Non-technical users make up the huge majority of people who will be using this system.

And to pre-empt what I know one of you will mention because you care about me, I do not ever put my life in the hands of anyone person, process, widget or anything else! It's nice to know you care. <3

I also hate spreadsheets. I mean, I will continue to use them obviously because there is no choice. Just thought world should know that I hate them.

So yes I am pretty much totally comfortable purchasing sensors and and getting my work PA to install them, I'm also having enormous fun creating new sensors but what I am not enjoying is being quadriplegic and trying to draw out nice designs.

Have a feeling it is not necessary and that there will be a simple way for me to plug in all of my data streams and be given a very shiny dashboard that I could maybe put on the wall of my office on some 17 inch screen something similar.

--------- I've included a couple of links describing autonomic dysreflexia, but be warned it's not a nice condition and it is not fun having one of these episodes. Not happy reading, just put them here for completeness

[1] https://www.christopherreeve.org/living-with-paralysis/healt...

[1] https://en.wikipedia.org/wiki/Autonomic_dysreflexia

No need to eat humble pie at all! it has been my experience thatEngineers And other reprobates like the ones that haunt can use don't know anything about this stuff, but the second it is brought to their attention I pretty uniformly had positive responses along the lines of "hmm, that is an interesting engineering question" and away we go. :-)

It is one of the wonderful things about this place, who gives a crap about the emotion being quadriplegic (I certainly don't) let's just solve the logistical problems! And as far as I'm concerned all of the problems that disability has introduced into my life have solutions that revolve around logistics, which project/process/company/widget do I need to buy/invent/collaborate on to make this thing work. It's great.

Aeotec and Fibaro Tend to be my go to companies when I want to buy some sort of sensor, anything from door and window sensors to motion sensors. Overall they have been the most solid and well performing in my experience.

Can you clarify what you mean by "conveyance of choice has" please?

Apple has a very very awesome accessibility software, it is seriously the best of the world and I have tried all in the decade since I became a full-time wheelchair driver. I use a chin controller to drive my chair, and I also use the chin controller to access Apple's Switch Control[1] using the Tecla Bluetooth bridge. As soon as funds permit I will be updating to the new Tecla as it is an amazing device, it really is the missing link.

This means that anything you can do on an iPhone I can do the same, it is not some subset of commands like most other mobile platforms. Once a new phone or any of the other Apple offerings is taken out of the box, I can get my designated hands to turn on the accessibility software and from then on I can do it all myself. There is literally no the company where this is true. As far as I know.

If I understand you correctly, it might be cool when my iPhone is connected to my wheelchair to be able to drive up to something while I am working and have it charge. It would have to be pretty robust as I will drive into it at some point!

[1] https://gettecla.com/blogs/news/15538916-what-is-switch-cont... [2]: https://gettecla.com/

No problem, in about an hour things will start appearing And I will include usefulness et cetera.

The most commonly used automation by a very long way are the lights, because I use voice operated computer people were continually coming into my asking if I was okay because they could hear me talking. This obviously was crazy makin.

So now they ignore all talking unless they see:

All of the lights pulse on and off in a blue colour, which means can you please give me a hand when you have a minute I would like a drink or something similar and it is not urgent.

Or

All of the lights pulse on and off in a red colour, which means drop and come running as I am having and episode of autononmic dysreflexia, my hair is on fire or something equally problematic. It is a very much urgent.

after that I would say that these three are the most used, I'm sure there is a way of pulling that information out of the database but I'm not sure how. If someone from home Assistant Team would like to tell me, that would be great!

* Battery Level on iPhone is below 20%, get someone to plug it in * Notification asking that the basement be closed when it starts raining, or if someone opens the window when rain is predicted to please close it * Logging whenever the medication draw is opened and closed and keeping a running tally (this one is super important)

actually,

I just wanted to saythat I totally agree with part:

However, the power of HA comes from the third step: automation. The best interface is the one you can forget exists.

I have the interface just for my carers and PAs et cetera, almost all of my interactions with the house are done via voice or other scripts triggered by various things. I would post a picture of my dashboard but it is horrendously messy contain hundreds things!

I thought somebody might ask, so I am just sanitising my config files and then they will be available on my Github[1] hopefully in about an hour. Was there any particular automation you were interested in?

[1] https://github.com/robotsandcake/homeassistant

Just wanted to say that my life as a quadriplegic would be 13.4 million percent more crap without Home Assistant. Being quadriplegic and having something as open as Home Assistant is absolutely amazing, I have automated absolutely everything in the house and home assistant has not choked once.

Couple that with one of the friendliest communities for newbies I have come across in a long time and you have something really awesome.

I've been using it for a couple of years, I have tried all the other open source alternatives but nothing really comes close for me. I'm actually fiddling with my installation right now as it were.

I cannot plug my phone in to charge it up myself obviously, so I am writing a little automation that will check who is in the house and announce through the speakers my phone needs charging up or send them a text message if I have their phone number when my mobile phone charge gets below 20%.

Totally cool beanz and I am totally serious about how much easier this makes my life as a quadriplegic.

Oh man, I really wish this was available on my Mac and not just mobile. I'm quadriplegic and cannot hold my camera to take pictures, but if I could get my PA to snap pictures throughout the day and then have my Mac process them with an application like this on my iMac… Seriously, my life would be 17.25M percent easier. Seriously.

If the dev is reading this, any chance of a port? There may be some chocolate in it for you!

(Also cash, totally willing to pay cash :-))

This is one of those things that now you've seen it you'll start to notice just how bumpy the world is! I know I didn't give any of this stuff a second thought until quadriplegia meant I became a full-time wheelchair driver.

Ramps on the front of buildings and internal step free access in modern buildings is absolutely wonderful, but unless every metre of a journey from where I am now to where I want to go is accessible then none of it is accessible.

The signal cannot carry.

For example where we used to live it was impossible for me to turn left out of my house at the beginning of any journey, it did not matter how much I tried to reason with thay nine inch high curb just would not smooth out. And that is it, that whole part of my neighbourhood was cut off because the engineers putting in dropped curbs have not seemed to fully grok the reason for dropped curbs.

This kind of mapping is absolutely invaluable and has to be kept in the open source world I think, that does not mean people should not make money from it but this is one of those things where crowdsourcing could really speed up the process considering we are all carrying around incredibly sophisticated geospatial mapping devices containing accelerometers, GPS and all the other bits and bobs needed to quickly map an area.

Hit me up if any of you want to collaborate on a project like this in the UK.

I just emailed you, this definitely looks promising!

Hey, that reminds me of me as well!

I still use DragonDictate for Mac to do all of my dictation, whether that is writing Hacker News comments, writing emails, having meaningful discussions (okay arguing) on Twitter or writing code.

One of the most useful features of DragonDictate for Mac is the Auto-text feature where you can use single words to trigger larger blocks of text, this is great for filling in empty functions et cetera. There are also some really great Sublime Text plug-ins like auto complete all which makes writing code so much easier.

I mainly like to work in Python, but also have a huge library of Bash scripts to iron out lots of the little wrinkles that pop up when you cannot use your hands and you're trying to use a computer efficiently. Honestly there are so many of them that I have been using so long that I am not sure I could enumerate them off the top of my head!

I have played with Talon a little bit but never really got to grips with it, I don't know whether that's because I'm too used to using my method or that Talon was a little overcomplicated. I am however so pleased that there is work being done in this area, I am really happy that developers and industry are starting to understand that Accessibility does not just mean "works with a screen reader" as it has in the past.

One of the main problems and trying to solve at the moment is how to write mathematical notation using the tools I have at hand, which is a Mac, Sublime Text and DragonDictate for Mac.

Anyway, I am a coder who cannot type, AMA!

Please take this comment from a quadriplegic with spina bifida in a positive sense it was made.

No, you're not alone and that is a very very common opinion.

It's an opinion that very quickly evaporates in my experience when somebody becomes quadriplegic, is about to have a child with a potentially debilitating disease, or is otherwise confronted with the reality of severe disability. Not the intellectual realities of disability that I think anybody reading this on HN can imagine what the difficulties might be for a quadriplegic, no I mean the actual pain filled, shit covered, fear inducing, inconvenient and potentially crappy reality a severe disability. You have to be alive to realise how bad things are, which is kind of a wonderful thing I think.

To be honest, it's something I hope you never have to confront. I really do my Friend. Be well. :-)

Edited to Add: You lot should stop down voting him in my really not very humble opinion, that's a super common opinion that I don't feel has an ounce of malice behind. But rather curiosity.

I almost certainly know the answer to this question and understand you're not my doctor et cetera et cetera et cetera and I won't try to do something Internet crazy when you tell me it's not possible.

(Deep breath)

That being said, Do you think hypothetically that this type of surgery could be used to help dashingly handsome 41-year-old Quadriplegic hackers with spina bifida like me?

(also, been interacting with neurologists my entire life and I think your understanding of the brain borders on the magical dark arts!)

Rock on, I bet she's wonderful. Congratulations!

If you find yourself getting low and want to talk to another grey beard hacker with spina bifida, just hit me up. I'm sure in my 41 years I can find something interesting to talk about!

By the way, they said I would never make it to 12 months, then 5 years, then I would be dead by 15, then 25....

41 years later...

(Yes, I know that this is anecdata. But that's definitely the best kind of data, amirite?)

That is a pretty wild hypothesis, but I would have to say that when we are at the point of editing genes to get rid of debilitating diseases then sign me up.

I am very happy the way I am right now, but given the choice then of course I would choose to be able-bodied. It would be asinine for me to think otherwise.

So yes, if we could get to the point where we are editing the genes of something in a test tube could not survive outside of that test tube that then might potentially go on to be a human then it is incumbent upon us to make sure they are healthy as much as we can.

If that makes any sense!

This is amazing news, it really is.

Slightly off topic but I would like to address the people in this thread saying things along the lines of "with a medical condition is serious as this, it's better to abort"

Yeah, fuck no.

I was born in 1978 in the UK with spina bifida and Chiari malformation of the back of my brain which basically means a couple of the ventricles are being pulled by my spine out of my skull.[1] (Very basically)

If you look at any sort of scan of my brain and ask a Neurologist what they are looking at and they will tell you very forthrightly that the person whose scan they are looking at will definitely be uncommunicative, will have cognitive impairment, will probably be on a ventilator and will definitely have a foreshortened life. (This is not from some hypothetical thought experiment, I've done this over the years)

So, speaking as a 41-year-old quadriplegic hacker with spina bifida who's not on a ventilator; let me say that life finds a way. I was written off so many times it's unreal, medicine is not a science but rather a series of very very very good guesses. We need doctors, but we need lots of opinions and you don't have to do what they say. They gave Stephen Hawking three or four years to live when he got his MND diagnosis, he lived another 30 years or so.

My life is great, yes I'm quadriplegic but once you get past that little speed bump I have a job, friends, a wonderful partner, family everywhere, a very serious addiction to Raspberry Pi's and exploiting networks and I feel incredibly lucky. I am so glad I was not aborted.

Okay, because this is the Internet it's time for the caveats

Yes I am aware I am slightly unusual and not all quadriplegics with spina bifida dodged a bullet in quite the same way I did.

Also, I think that the woman who is going to be carrying the baby to term has the right to decide whether to abort or not. Regardless of my opinion because I did not have to have a baby.

[1]: I know, eww right? :-)

Can you email me, I would love to move more and more of this stuff inside the wire and if we can do something that we can then share with other quadriplegics so they can keep control of their own medical info; that would be very groovy.

Thank you for your concern, but I never and would never place my life in the hands of any one piece of anything really. Be that technology, person or process.

The Fitbit has given me a heads up a little earlier than I otherwise would have got it, the value added for me is that it's cheap and a great indicator. But an indicator is all it is and it is part of a wider protocol we have in the house for preventing and detecting Autonomic Dysreflexia. A vital part, but still just one component.

I do wish I could turn off the step counter though, and if it could detect when I'm asleep that would also be great. The former I don't think I'm ever going to do very well on and the latter is really not the fault of the device as I don't move around very much at all.

Thanks again for your concern! :-)

I'm pretty much doing that very thing. I'm quadriplegic, so every single action I want to take in the world has to be mediated through a third party. That said party is anything from another person to one of the digital assistants.

As another poster mentioned I think, I control pretty much everything in my house including but not limited to unlocking doors, windows, climate control, the lights, posting to Twitter and on and on and on with a cobbled together solution of many different components from different companies.

It's done with a combination of all three of the digital assistants, various scripts and the very wonderful Home Assistant[^1] mostly gluing it altogether. It is by no means a single complete solution, but when I'm controlling the house using just my voice and somebody sees me doing it they react as though I'm some sort of dark wizard.

I love having an automated house and I think Home Assistant is probably one of the best solutions for making all of the different IoT devices communicate at the moment, I think the further down this road we go the more a single solution will probably evolve.

I would have to say though that the home automation stuff that enables me to call for help in an emergency is the most important thing that it does, I can flash the lights different colours when I need help depending on the level of assistance I need. Or if my Fitbit notices that my heart rate has gone below 40 BPM for more than 10 seconds I get a notification, as it is almost indicative of an attack of Autonomic Dysreflexia. I can honestly say that this home automation system has actually saved my life without an ounce of hyperbole.

[^1]: https://Home-assistant.io/

Mad Mike Banks and Richie Hawtin literally made my head turn into a small puddle of goo at Glastonbury 98, I honestly think I left a couple of drops of my soul in a field that sunny afternoon.