The Quiet Musings

For the past two years I have immersed myself in accessibility, inclusiveness and diversity. As a front-end developer, my focus is of course on websites, user experience and technology. But I’m also a late deaf person. This gives me my own unique view and experience in daily life. When using the internet, doing mundane things like banking, ordering food or interacting with people.

Not a week goes by that I don’t talk to others about accessibility and inclusiveness. With both sides, abled and disabled people. That plus my own experience made me realise that in spite of all the good intentions. Inclusiveness still doesn’t get farther than good intentions.

Inclusiveness in the work field

Being inclusive is not like switching on a light. It takes genuine effort, dedication, empathy and hard work. From both abled co-workers and disabled co-workers.

The mantra is that we need to focus on what people can do well. Focus on their strengths. Give them the tools and space to work at the best of their abilities.

A disabled person needs to communicate clearly what they need to do their work with success. Abled co-workers need to understand that it takes a mindset change to create an inclusive work environment. It’s not just accommodating the office for a wheelchair. Articulating well for a hard of hearing co-worker. Avoiding putting bags on the floor creating obstacles for a blind co-worker.

It’s about understanding that being a disabled person comes with baggage. It costs more energy to compensate for being, deaf, blind, in a wheelchair or otherwise impaired. Personally, when I’m out of my safe place (home) I’m always on some kind of high alert. At work, social events, congresses, on the streets, etc.

It’s not only negative things that come with a disability. In my case due to being deaf, I’m always solving problems on the go. I need to do this to adapt to a world that is not designed for deaf people. I’m always thinking in solutions.

It appears that many employers and co-workers expect disabled employees to work just like them. Fast, make overtime regularly, flexible to adapt to anything, see the world the same way. While every disabled person has its own unique needs, one should not assume that they can function the same way as an abled person.

Steps to true inclusiveness

There are several steps a company can take to create a truly inclusive work culture.

Approach an organisation specialised in disability. There are many focussed on different disabilities. Most of them have experts that can give guidelines and tips how to make the work environment more inclusive.

Treat employees as they wish to be treated not as you yourself wish to be treated.

Don’t negatively question your employee/co-worker when they tell you about their disability. It takes courage every time to be vulnerable and tell someone about their disability and struggles. Respect that and don’t use that vulnerability against them.

Create an environment of open communication without judging.

Listen to ideas, feedback and input from disabled employees. They have a unique view on the world.

If the team undergoes drastic changes, it’s a good idea to touch base again with everyone about inclusiveness.

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, birth-date 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.

Automation, 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 accessibility 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.

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.

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.

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.

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.

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 darice {at} darice.org and I’ll add it to my links page.