The Quiet Musings

The Hospital for Abled People

- December 6th, 2017 -

One would expect the hospital to be the one place accessible to everyone. Unfortunately even in 2017 it is not.

I have been a patient at the same hospital for almost 14 years. Till today it’s still a problem to communicate that I am deaf. Unless I ask the doctors and assistants specifically to email me, they will call me or my emergency contact if something comes up. I can’t be independent because applications and systems aren’t inclusive.

The system that the hospital uses has no field to indicate that a patient is blind or deaf or in a wheelchair. They can’t put in my information that I’m deaf and the primary contact method I prefer is email. That my sisters number is only to be used in case of emergency. That all appointment reminders can be texted to my own number or emailed to me.

Every time I see a new doctor or go in for a test I have to tell them I’m deaf. Because that very important information isn’t next to my name, birthdate and photo.

The system can get my pass photo and identity information from the government system. But yet it can’t handle important patient details that is crucial to know.

Automatisation, not for everyone

This year they implemented check in computers. Now when you have an appointment, you have to use a touch screen computer that scans your Dutch ID card, Dutch passport or Dutch drivers license. The system will show you your address and contact info and ask you if everything is still correct. It shows you what appointments you have that day. Then it will print out your ticket with a random number and the route you have to be at.

The first thing I noticed when checking in the first time: no privacy. Everyone can see your photo, name and address. I quickly learned to use one of the computers with the screen facing a wall. Months later they finally caught on and added those side screen things that ATM machines have. A small attempt to give one privacy.

I have a suspicion no actual patients were consulted when designing the system and process. For starters a blind person can’t use the check in touchscreen computers at all. They lose all independence and are forced to take someone to their appointments with them or ask one of the helpers to do it for them.

Elderly people who aren’t tech savvy also depend on family members or one of the helpers. It would have been better to use the system and retain the old way of just checking in with humans. This way people can keep their independence and dignity in an already difficult health situation.

Numbers and more numbers

Once you have checked in you get a ticket with a number which is shown on a screen (random numbers) in the waiting room when it’s your turn. No more doctor or nurse that comes to get you. Luckily most health workers still come out to get their patient. But there is no guarantee.

For me as a deaf person it means staring intensely at the screen as to not miss my number. I can’t hear the sound when a new number is shown. When the doctor or lab is running behind I’ll be sitting for 30 to 40 minutes staring at the screen. Instead of reading something to pass time and calm my nerves.

A blind person has no idea when their number is next. There are no braille tickets and the number is not called out. Because of the aforementioned lack in the system to highlight if a patient is blind, deaf, in a wheelchair and/or other. A doctor won’t know to get the patient. Unless it’s a patient they already know.

A couple of months ago I finally asked one of the doctors assistant if it is possible to put in my primary info that I’m deaf. She mailed the tech department for me with that question. She got a standard non answer: “you can add it in the patients file with the rest of their medical info”. Which isn’t the point. This kind of information should be available next to your primary information. Healthcare workers shouldn’t have to click more than once just to find out this kind of crucial information.

Once I got called three times in a row from an unknown number at the end of the working day. I had been to the hospital that morning for a blood test. My gut instinct told me it was the hospital calling with bad results. I had to answer the phone tell whom ever it was that I am deaf, to send a text message.

Turns out my own doctor wasn’t there and when they flagged my results  — another doctor who doesn’t know me and did not take the time to read my file, called. They just checked my primary information and called asking me to come right away. Needless to say it was a long anxiety ridden hour while I tried to sort things out which this doctor. Who did not know I am deaf or that the flagged results are my normal blood values.

This isn’t an isolated incident at one hospital. I have been at three hospitals and they all lack accessibleness and inclusiveness. It shouldn’t be this hard for disabled patients. It is not that hard for developers to make these systems accessible and inclusive. Having a diverse group of people to test the system can point out all the fallacies. There is no place as diverse as the hospital, because guess what? Health or lack of it, affects everyone.

What being deaf means to me

- November 20th, 2017 -

I noticed there is a lot of misunderstanding when I tell someone I’m deaf. Most people don’t grasp what it means. They assume I’m just hard of hearing. I think the confusion stems from language use. A lot of people who are hard of hearing say they are deaf. People wearing hearing aids say they are deaf and don’t say they are hard of hearing.

There are also many degrees of hard of hearing. Some people have difficulty with lower tones, others have difficulty with higher tones. Some can use the phone, others can’t. Hearing aids or a CI don’t “cure” ones hearing. They just make it possible for someone to hear a bit better.

In my case, I was probably born with small hearing loss. It was first noticed when I started first grade. By the time I was in high school I started wearing hearing aids.  In college I was wearing the “strongest” hearing aids available at that time. My hearing progressively decreased over the years.

Besides being hard of hearing, I also suffer from tinnitus. I think I always have, I don’t remember ever not having tinnitus. There is always phantom sounds going on in my ear/brain. When I focus on it they seem louder or when I’m stressed, laughing, etc. Any impulse can strengthen the tinnitus.

At 26 I was profound hard of hearing and then I became sick. I was given some heavy meds which killed the little bit of hearing I had left. First my right side hearing “died” and later my left one. Since December 2007 I’m 100% completely deaf. Which means I don’t hear anything at all. Not even with the best hearing aids.

Becoming deaf later in life the way I did is called: late deaf. For most of my early life I went from mild hard of hearing to profound hard of hearing and then deaf. I’m not sudden deaf. That is a term for someone who had good hearing and next they lost it all.

After losing the rest of my hearing I chose not to get a CI. The risks of complications are higher with my medical history. And there aren’t any guarantees how well you can hear after getting a CI.

I’m a loner in the world of hearing and deaf. I grew up hearing and know the pleasure of group conversations, sounds of nature and music. I became late deaf at 26 and know what I’m missing. People who were born deaf have their own community, culture and their main language is sign language. Till today I have yet to meet someone who like me became late deaf. Who can’t hear anything and who don’t wear hearing aids or a CI.

The hearing assume I can get along 100% on lip reading. While lip reading only covers a max of 40% of what’s being said. The deaf and/or hard of hearing expect me to be able to use sign language.

Sign language is hard for me to keep up with. I’m not surrounded by people who sign. It’s like taking up a complete foreign language like Mandarin or Japanese. And only being able to put it to use once or twice a year. You can hardly become fluent like that.

There are sign cafe’s and I’m looking forward to going. But I’m not someone who is into socializing a lot. I’m an introvert at heart. I get drained fast when in a crowd of people. I don’t see myself going every week.

The whole crux of this is — no one deaf of hard of hearing person is the same about their hearing or lack of it. I am an example of that. We should never assume, expect or demand.

If you don’t know something, just ask. I rather someone ask me than assume.

Photo of two people with their smartphone. Text on photo says: Keep calm and type it on your smartphone

 

A Tale of Unix and a Web Server

- November 4th, 2017 -

Since I entered the world of coding in 2002, all I wanted was (still is) control. Control over my code, over my computer and over my website. I have no recollection how I stumbled upon weblogs like Zeldman, Kottke, Simplebits, etc. back in the golden days of weblogs. But once I found them there was no looking back. The first iteration of this weblog was made without tables, according to web standards with my own home-brewed PHP/mySQL CMS.

Back then Apple MacBooks or iBook and Powerbooks was quickly gaining popularity. I loved the fact that Apple uses Unix. I was always a Windows user and once I started coding with PHP in my free time, it became a pain for me. At college it was all Windows, IBM content management systems, ASP and a major headache to get things working smoothly on Windows.

Through my new online world, I read weblog posts about Apple computers, lusted after the nice apps, OS X interface and easy way to get things done with Unix. I kept dreaming on buying my own. Also, I was a college student renting a 3 by 4 room with no extra income.

Then I got my first internship, saved all my money and in February 2004 I bought my first Apple, a 12 inch iBook. Right away I also bought Learning Unix for Mac OS X Panther

It was a learning curve, but in no time I was sold and did not ever look back at Windows.

cd, ls, mkdir, chown, chmod, sudo, nano

By no means I’m a command line expert. I still forget longer commands and always have to look them up. Don’t even ask me to type a whole string of command. But I understand how the command line works, I can get things done with it, I have totally broken my OS installation once and recently I just setup a server on Digital Ocean.

What I learned in all these years using the Unix command line: Make sure you have time when starting a project like setting up a server. Expect things to break, don’t be afraid, back-up, back-up and back-up.

A whole day in command line mode

Almost two weeks ago I woke up really early to wait for people to come service my apartment. On a whim I decided to get an account on Digital Ocean and setup a droplet. I had been contemplating switching to a new server for months now. Once I started I got so sucked in. I did not leave my desk except to get food and stuff, until late night. I usually plan something like this in advance with a step by step plan. I obviously woke up crazy that day.

Digital Ocean

Digital Ocean droplet creations makes it easy to setup a droplet with WordPress. But remember, I woke up crazy and skipped the one-click-install tab and just created my droplet with Ubuntu 16.04 x32. At least I had the foresight of already knowing to choose the x32 version because I have the 512MB memory droplet and that’s a bit weak for running the x64 version.

Caddy, Apache, Let’s Encrypt, PHP7, mySQL

The thing I most wanted is SSL for my site. Like 10 years ago we all had the small web standard, XHTML, CSS badges. SSL is something you want, actually no: need, these days. I started reading the tutorials on web servers and Caddy was the first to come up. Completely unlike me I went ahead with it without doing research first except to figure the workaround for the binaries since Caddy went commercial. The install went smooth except for the delay while waiting for Leaseweb to change the name servers and then waiting for the DNS to propagate. I got my web server up and running with SSL just to realise: shit, I actually really prefer and need Apache2 because ain’t nobody got time to figure out all those .htaccess rules I currently have into Caddy. Let alone fighting WordPress penchant with using .htaccess and who knows what future app running in Apache.

Luckily I created an image of my droplet right after setting it up and the initial server setup. It was just a thing of restoring that image and starting over, but this time with Apache. I used that specific tutorial which makes it easier as far as I know, to create subdomains. Then I installed Let’s Encrypt. In between all that I installed PHP7 and mySQL. Those were the easiest to get done.

A lot of people are into deploying and me too. But most times I just want plain old FTP to just dump everything on the server and be done. Especially images, which I have a subdomain for. Plus, moving my WordPress installation from the old server to my droplet is far easier through FTP or in this case, SFTP. It was a bit of a head-scratcher, it wasn’t as easy as following this FTP instructions. Transmit, which I use, is an intuitive FTP client. But the thing that really stumps me every time in Unix are permissions. They are such a pain. Even days after being done I still had to mess with permissions because WordPress automated update failed due to permission issues.

PhpMyAdmin and WordPress

I installed PhpMyAdmin quickly and WordPress (with some php.ini edits) I did old skool manual way by downloading the core files, uploading them and running the install. Imported my database export from previous install, install all the plugins (while fixing more permissions) and done.

Also, a PHP7 thing: php.ini comes with short_open_tag standard disabled. I tend to use short tags in my templates, so I had to fix them all which is more sensible than enabling short tags.

All those years of setting up PHP on my Mac helped because things like Apache conf files and php.ini aren’t alien to me. Using nano to edit them is less intuitive, on my local setup I just use Atom. Nano slowed me down a bit.

10 days later

At the time of this writing this weblog has been up and running for 10 days with no problems so far. The only thing that completely broke and won’t work is my Mint stats app. I just get a blank page, no code, nothing. PHP error reporting returns nothing. It’s just dead, like the Mint app since Shaun discontinued it.

I have Google Analytics but if you ever used Mint you know how nice and easy it is. Just one page (mobile friendly) with all information, especially if it is a low traffic site. I tried Piwik but it’s also too big. I just want referrers, detailed location, popular pages, pages to watch and browsers/pc/mobile info in one oversight.

If anyone is an Analytics expert and know if you can customise Analytics for this let me know. Even better, if anyone knows why Mint won’t work (I suspect PHP7 incompatibility) let me know.

Besides that I’m happy with the results. I do realise that if my website goes down there won’t be a hosting company behind it to send a support ticket, it will be just me frantically trying to figure out the problem and then fixing it.

If you have any comments let me know at @Darice

Note 19/11/2017 After running the droplet for 25 days I discovered that Apache2 uses up almost all of the 512MB memory. I fixed the Apache conf file like shown in this post: How To Run WordPress on a DigitalOcean 512MB VPS 

A Gulpfile for getting started

- July 17th, 2017 -

Every time I start a website project I start first with flat-file pages. HTML and CSS, nothing else. Only after I’m happy with the structure and basics will I merge it into a CMS theme, mostly WordPress.

SASS has become unmissable for me. Although I still do go back to CSS when learning new things like Flexbox or CSSGrid, SASS is my go to when coding. It’s just faster.

I’m not a fan of using tools and frameworks for everyting without a good reason. I like to know what I’m doing, being able to understand all the code, because I coded it and to keep the code simple. But Gulp has become my favorite tool because it helps streamline my coding process and saves time. To think I only got into Gulp to use autoprefixer because SASS mixins wasn’t working.

Now I just keep a good gulpfile to be able to start a new project easily.

Installing Gulp is pretty straight forward. Just follow step 1 to 4 explained in Getting Started with Gulp.

Run npm init in your new project folder. Fill out your project details. Add your packages and gulpfile.js and get coding.

I use the following packages in my basic Gulp workflow:

I keep my gulpfile.js in a Bitbucket repository. Feel free to use it, improve and expand on it. My goal is to learn and get more out of Gulp.

Like finding out how to integrate DPLOY into my gulpfile, if it is even possible. Or how about adding Twig templating? Markdown to HTML? Actually, I just want a flat-file CMS that runs on one gulpfile.js Crazy?

Food for the hearing and healthy only

- May 25th, 2017 -

Since the economy recovered the past years, food delivery websites are more popular than ever. You can put on Netflix and order anything your stomach desires and forget the world exists. Except if you are deaf or hard of hearing and live alone. Or maybe you live in a large building and the doorbell is broken.

In my case, I’m a bit of a food snob and I’m deaf. A food snob – part by taste and part by diet restrictions. And deaf because that’s one of the cards life dealt me later in life.

Thuisbezorgd.nl is the oldest most known food delivery website in The Netherlands. Most restaurants on it are the variety of cheap pizza, spareribs, shoarma, sushi and other fast food. You get the gist. It’s fatty, salty and in several cases with questionable hygiene.

In comes Deliveroo.nl Oh, how happy was I when I read about it. A delivery website that caters to the better food places. A gourmet hamburger or roasted chicken with veggies. Sounds better than a 20 minute salty pizza. Am I right? Except for one small not so small problem. See below exhibit one and two.

Most people won’t spot what is missing here. It’s a very small key part of any good usable and accessible interactive website. There is no “Comment” or “Special instructions” text box.

Want to let them know you are very allergic to peanuts? Too bad. Don’t want salt on your french fries due to your blood pressure? Too bad. You are deaf and want to let them know to text you instead of ringing the doorbell on delivery? Too bad.

And this is why I have never ordered anything on Deliveroo.nl.

Foodora.nl was the same story. But they have made adjustments. I have yet to try using their website since they implemented the comment box. I need to have lots of patience if I decide to try. If things don’t go well I’ll end up with undelivered food I paid for and unable to communicate with the restaurant.

That is another thing with all these websites and food places. You can order online but if there is a mishap or anything, they only provide a phone number for you to call. No e-mail, no chat, no texting or WhatsApp. No food.

Thuisbezorgd.nl is the winner here who always had the “Comment” text box option. Some of the better food places are also using Thuisbezorgd now. Lucky for them. Now I spend my money on Thuisbezorgd and the better places available through them.

Screenshot of thuisbezorgd order page

Accessibility is positive for everyone. The client and the seller. If the product is accessible for everyone, you get more clients thus more income (and/or visitors). It’s a win – win situation for everyone.

Text: The biggest misconception about accessibility is that by adding it you're doing someone a favor. You're not, you're doing your job.

p.s.
Some of you might wonder: “Don’t you have a doorbell system to alert you?” Well yes, yes I do. Only it won’t work with the building bell, only with my apartment doorbell.

Content Denied

- April 17th, 2017 -

Losing my hearing has made me more aware of how inaccessible the world we live in is. From train announcement only being called out instead of also being displayed on screens, to movies without subtitles and YouTube auto captions still sucking in 2017. Humans have a hard time being inclusive of everyone. The world is built for hearing, seeing, talking and full mobility only. Let me not even start about people who avoid me because I’m deaf. Either because they don’t want to deal with adjusted communication or they just don’t know how to deal and don’t ask me for whatever reason.

More than 10 years ago weblogs and articles were the main source of content on the internet. I missed nothing. Back then I was severely hard of hearing but thanks to so many written content I taught myself HTML, CSS, PHP and mySQL with no pain. I could read the latest TV show review or spoiler, breaking news, regular news, it was all written.

But as the years progressed, smartphones and tablets became mainstream. Everyone in the western (privileged) world is online 24/7. Which means our attention span have become less and less while the content available keeps growing everyday. People stopped writing and started making vlogs, videos and podcasts. I stopped following several weblogs and websites because most of their content is now only available in audio.

Humans have a hard time being inclusive of everyone. The world is built for hearing, seeing, talking and full mobility only.

Gone are the days that you could find lots of written content to learn the latest in (in my case) web development. It’s mostly video now a days with a few select developers who still write amazing content to learn from. Fortunately several videos have subtitles or transcripts. But as a deaf person, for me the best way is written content. With video’s you have to split focus on screen and text while trying to grasp and learn the material. You can imagine that with coding it is a bit harder than lets say a cooking instruction video.

Podcast and vlogging are so common now a days that even book reviews (book reviews!) aren’t written anymore but now you have booktube. I used to have a bookmarks folder full of book reviews weblogs. Most of those sites are dormant now.
Somehow I cannot compute why, why people who love reading, who love the written word. Only review those written words in video. Videos without subtitles.

People meaning well keep telling me that YouTube has auto caption. There is no eloquent way to put this. YouTube auto caption sucks. For being a Google product, a company that has whole departments full with engineers for each product. They still haven’t gotten speech to text even decently right. It’s easy to try for yourself. Mute the sound, turn on auto caption and use YouTube like that for a couple of days. Also, notice how happy you’ll be when the channel offers original subtitles for their videos.

I am glad that a group of front-end coders are now investing in inclusive design. Making websites accessible for everyone. It’s not easy. Not only do you have to work more precise and educate yourself about all kinds of people who use the internet. You have to educate the people providing content for the website you painstakingly coded to be usable for everyone.

It is an uphill battle, while a growing group of front-end coders are doing the good work. A giant like Facebook keeps pushing for video content as main content while doing nothing about captions or audio description. Netflix is leading by starting to add audio description and everything is subtitled. Although not in English.
Another misconception. Just because I live in The Netherlands does not mean I want subtitles in Dutch. I want them in English, especially if I’m watching a movie spoken in English.

There are many more examples of this imbalance. Technology keeps advancing but only a little is being done for inclusivity. Think about the new era of smart home, Amazon echo, etc. It’s mostly audio interface. What about we perfect speech to text and vice versa before we exclude even more people from daily experiences?

Obviously I am writing this from my personal deaf experience. But it counts for everyone. Improving inclusivity needs to be done and established as a standard on which we build everything. So far, this seems like a pipe dream.

Meanwhile I’m going to start a curated collection of podcasts, vlogs and YouTube channels that have transcripts or subtitles. It doesn’t have to be about web development only. A podcast about Buffy the Vampire Slayer, a vlog about pens and notebooks, a YouTube channel about the greatness of avocados. You get the gist.

Send your suggestions at and I’ll add it to my links page.

Gilmore Girls, the revival

- November 27th, 2016 -

Photo of Lorelai and Rory in winter Stars Hollow

I am not a hardcore Gilmore Girls fan. I can’t even remember which year I started watching Gilmore Girls and I certainly can’t quote from the show like I still do with Friends 12 years after the finale.

The only shows that stayed with me long after they wrapped up are Friends and Frasier. Friends carried me through my college years, first time away from home living in student housing. And later when I got sick, Friends helped me keep my cool. Later on Frasier joined late night when I was lying in the hospital after my kidney transplant. Since then I always put one or the other to watch when I need some distraction or nostalgic comfy feelings.

I did like Gilmore Girls enough and after having seen it more than twice, I was excited for the revival. The last revival I was into was the Veronica Mars movie. I even supported the crowd funding for the movie. The movie was followed by two books that continued the story. I’m hoping the Gilmore Girls creators will also release a book.

The Gilmore Girls revival is going to be the revival to beat. 9 years later they managed to recreate the whole Gilmore Girls world like it never went away. They got all the cast back, although some in lesser capacity due to other obligations, age and health. Richard Gilmore absence left a gapping hole which they handled magnificently. The pain from his death crossed from non-fiction into fiction, making up for some of the best scenes in the entire of the series.

The way all actors resumed their characters to a T shows true talent. Simply amazing. Gilmore Girls cast shows that when you get actors that care for their show you deliver the best show to your fans. Veronica Mars was the same. The deep appreciation for their fans.

 

Why on Earth aren’t you on Xanax? It was invented for you.Michel Gerard to Lorelai Gilmore, A Year in the Life

 

Story and plot wise Gilmore Girls has some controversy which I believe to be the result of fans having too many expectations about how the revival would go. The over hyped four last words, which fans have been speculating about for years. For me the show was good, I knew it was going to be an open ending because the creators said so and in interviews with Entertainment Weekly the actors commented that when they found out the last four words they said that it was not a closure to the story.

Now I only wish they’d release a book to continue the story or at least wrap up the open ending. I’m pretty sure a spin off is not possible considering many of the actors involved in the open ending already have other on going jobs. And lets be honest, a spin off would not work. What made this show great was the whole of it. The town and all its people.

I’m still mad at Netflix for blocking VPN and forcing me to the Netherlands catalog only, which is almost abysmal. But one thing Netflix can do very well is pick their original shows. I’m very glad they got Gilmore Girls and not Hulu or Amazon.

Mensenlevens boven trots

- September 15th, 2016 -

Photo of main street in Aruba

Aruba can’t catch a break. Op Aruba is de tensie (lees, haat) van geregistreerd partnerschap nog niet eens gekoeld, of het eiland is alweer aangeslagen door geweld. Fysiek geweld, het ergste wat er is. Wat iedereen vreesde dat ging gebeuren is daadwerkelijk gebeurd. Moord. Moord van een onschuldige burger in haar eigen huis.

Al maanden, nee al meer dan een jaar gaat het berg afwaarts met de veiligheid op Aruba. Atracos worden links en recht gepleegd. Van de tientallen lukt het de politie zo nu en dan de daders ervan op te pakken. Feit is dat het politiekorps onderbemand is. Je kunt als politie zo goed je best doen, maar als er niet genoeg mankracht is, dan kun je weinig als er een golf van criminaliteit over het eiland gaat.

Deuren open gooien voor iedereen die bij de politie wilt is geen oplossing. Voor zulke zware misdaden heb je nú politie met ervaring nodig om het een halt toe te roepen. Er is geen tijd meer te verliezen, het gaat niet meer om de gestolen tapa di wiel di auto, een zeldzame atraco bij de supermarkt om de hoek of bij e cas di lotto. Het is geëscaleerd naar het ergste niveau: het vermoorden van mensen in de veiligheid van hun eigen huis.

We hebben een lange geschiedenis met Nederland, we kennen slechte en goede tijden. Aruba is trots op haar Status aparte en terecht. Maar er komt een moment dat je je trots moet inslikken, moet samenwerken en vragen om hulp. Geel of groen maakt niet uit, mensen levens staan op het spel. De veiligheid van burgers is ontelbaar veel belangrijker dan politiek.

Aruba heeft hulp nodig om weer orde te brengen in de samenleving. Politie met ervaring om ons korps te steunen, fregatten op zee om de kustwacht te helpen met de grote instroom van wapens. drugs en mensenhandel. De tijd van discussie, brainstormen en vergaderen is voorbij. Het gaat alleen maar erger worden en nú moeten er goede, langdurige en harde maatregelen komen.

Als dat allemaal geen goede reden is, beeld je dan in wat een drama het wordt als Aruba straks op de lijst van risky destinations staat.

Bijgewerkt op 2 oktober 2016