Let’s talk about accessibility of hospitals and healthcare, in both buildings and digital environments. Should be easy, eh? 27 years and counting to make sure your buildings have wheelchair accessible ramps, elevators and bathrooms, and all those door signs have braille, to comply with ADA, Americans With Disabilities Act. What else could there possibly be to make it accessible? For the sake of convenience to keep this a bit more contained, I will exclude the whole cost aspect of access, so let’s just assume everyone can afford the care they desire. (Cost wise many things in healthcare are very not accessible)
Since this will be a huge can of worms, let’s make put the worms at least in bite size topics
Let’s do a blind tour
I’m one of those people that reads those dots on the door signs. So… let’s get ready for the hospital tour, shall we? There are several groups of people I’d love to do blind tours with in healthcare facilities, among them especially: architects, interior designers, sound engineers, doctors, other healthcare facility stuff (not limited to nurses), social workers, people working in mental health industry, designers of medical equipment, healthcare researchers...
How do you find your way around in a hospital? I could just silently sit in some corridor and let you find your own way. But first, there are some blind-specific things I’d love to show you and make you experience. Being in total darkness, with all cues of time removed; being in an environment with bright light on, with intermittent noises and people, all cues of time removed; finding your way inside building with some usable blurry sight; communicating with staff.
Being in total darkness comes easy to me. I can hear better in the dark, concentrate better without visual tinnitus, and darkness is just pure bliss. Now, let’s start with your room. To make it an authentic experience, first you’ll have been brought to the hospital while you were unconscious, and you’ll probably have some remains of sedatives or general anesthesia drugs in your system. You’ll wake up, figure the rest out. You’re on a bed. Figure out the room, find the bathroom, the exit to the corridor… it’ll probably take you a while to figure where the bathroom is, where the light switches are, and how to use the bathroom or take a shower. Fine, ask for help any time, and some helpful person who knows the place and finds everything in the dark can help you. After getting used to the environment so far, go ahead, explore the corridor. Find your way around as far as you can, and find back to your room and bed. So make a note of the number, the dots on the room sign. Now… find your way around. Find an exit that works. Find the room of the doctor under whose care you are in (the name is printed on your wristband, sorry you can’t read it). Find the x-ray room, or audiology department or something else. Oh, right… if you get this far, congratulations, your blind skills are better than mine. I can’t ever find even an exit.
Then we have the next blind experiment: lights on. This will try to show you what non24 is like. So, you will be in rooms with lights on all the time. Never darkness. Just bright, brighter, dim but with strong blue hues. No natural light whatsoever, no way to see out of the window to have a clue what the time or time of the day is in the outside world. You will also have constant hospital noises nearly all the time. You will have people checking in your room every random 15 or 30 minutes, and whenever you’re falling asleep, someone will drag in the nurse cart, and pester you with your blood pressure and other bodily number measurements. You’ll get food that doesn’t have a clear indicator in if it’s a breakfast, lunch or dinner. And no, you can’t have dark shades or any of your own sounds for this experiment. You can pick a tv channel from their choice, and the screen will be on. This version will probably need to last at least 3 full days and nights to make a proper effect. Every time you’re falling asleep, some noise or some people will come to poke you awake. If this works successfully for you, you’ll be very tired, grumpy, furious about not having a clue when is now, and just want to get a good night of sleep.
Experiment 3 is wayfinding with some usable sight but without much of visual cues. So let’s prepare you, Captain Cataracts. Maybe my eye drops will suffice for that? They are ultra greasy, for night use, as they blur everything for hours. I’ve read people’s complaints about that side effect… if that doesn’t get your world blurry enough, let’s make you glasses with some strong magnifying glasses. Or find a pair of those simulators that show what the world looks like to a newborn human baby. Here’s an entrance, now find your way to some other department. Radiology, or females’s issues. We’ll need a big hospital building for this, so you can then find your way around. Maybe there’s a map… and as usual, it’s not tactile, just print. To find the map, you’ll need help locating the correct wall and read the labels on it. Or maybe someone just tells you which way to go: follow the green line on the ground thru the pathology department, from there the blurple line to neonatology, then pink to cancer, then some other color that you also don’t see to that radiology department. Or take the elevator over there, then go to the 4th floor, and it’s right over there. Um, right. Over there is where a lot of things are apparently. Since you don’t walk around with one of those white fancy selfiesticks, people probably give you more of directions that make no sense. You probably will notice the difficulty in wayfinding without visual cues. What is the color of the wall by the entrance? … blurple? Brownish? Yea, try to find your way back to the same spot after. You’ll sort be able to see the larger spaces, or small amount of detail in places, and will hopefully find some kind of method to remember where you came from.
Communicating with medical staff is your next challenge. I won’t even bother with any sort of blindfolding or masks for this experiment. You’ll just get the same treatment blind, deaf, deafblind and/or autistic people get every day. Doctors or staff will not introduce themselves. Read the name tags… oh, wait. I want you to be able to see all facial expressions etc if you’re into that kind of thing. But no name tags anywhere you can see. And no medical uniforms on anyone. You’ll recognize who the doctors are from their arrogance, style of speech, and their interrupting you every 12 seconds. No matter what you’re trying to say. You’ll also have a “caregiver” that will talk on your behalf. So the arrogant, interrupting person who therefore must be the doctor, will talk about you with your caregiver right by your feet or 3 yards away. You can hear them just fine. Oh, you are interrupting now? Let’s put that useless curtain around your bed and talk about you right at the same spot. Here, you’ll need this and this and this drug. Here’s the required info sheet about them and their controindications. (Either in a microfiche size font, or blank papers). To be able to pass this experiment, you have to demonstrate your submissiveness, not ask any questions, and if you point out you can’t see or read something, you’ll get the looks usually reserved for severely cognitively challenged people, and will just be ignored. Oh, and maybe a hint of prosopagnosia here: everyone will have the same looks, so you can’t tell anyone apart from their looks.
Hopefully you’ll have learned something from these little experiments. Empathy both in how you treat your customers, and in finding ways to make the info, paperwork and environments more accessible and welcoming.
Modifications: Deaf tour. All of the above BUT everyone will speak only in a language you don’t understand a single word of, like Vietnamese, Somali or Finnish. With the facial expressions and body language of people speakin those laguages. Ask whatever you want, but wceryone will answer you in that language, and treat you like asimpleton who can’t understand wven basic language. Deafblind version: noise canceling headphones, of the above so far, and a sleep mask blocking all light.
In the wayfinding experiences above you’ve hopefully already noticed many of the difficulties in this field. Just having everything accessible for wheelchairs, and all rooms and signs labeled with braille might make your building pass the accessibility standards, but it can still be a terrible place.
You’ll need landmarks. These need something nice and clear, visual, and also sound environments that will make them easy to find. An open staircase will have a soundscape that will be very different from a plain corridor. A circular wall will bounce the sounds nicely, and maybe some kind of water feature with sounds of water, or birds or fish or a quiet naturescape soundtrack would be nice indicators for key spaces like entrances. Big, bold colors by key spaces can also be helpful. “Go left after the entrance with the water features, go straight until the blue wall, and it’s the third door to your right”. For some reason, bold colors are something I never see in hospitals (never used to see either, before becoming a dot reader). Boring, bland brownish-purplish-whatever-that-color-is is probably claimed to be more calming and healing by architects. It’s not. Use bold colors somewhere, and use them wisely.
Other few elements that are usually completely missing in the US healthcare places: any pieces of nature (such as living plants), access to fresh outdoors airs, windows that open. Being indoors, with no fresh air, for days, is very unhealthy. If you had windows that could be opened, you could also smell from the air that it’s early morning, or late night, or any other time of the day.
I would make the floors have different materials. Mostly hard ones, for walking paths.
Before you visit a doctor, you are typically handed a 30 page paper questionnaire where everything about your bodily history and health features troubleshooting is supposed to be conducted. Filling them on paper might be a preference for many people, especially those without digital confidence, and enough sight, but it should not be the only way.
I want to fill in that paperwork prior to visit, online. Make the questionnaires accessible to screenreaders, and submittable securely prior to visit. Also make the details of your place accessible. How to find the building, then indoor directions if in a larger complex, details about the doctors for your healthcare shopping customers. Not having the option to have the customer fill in and submit their own questionnaires with their own devices is unacceptable. I don’t want to have to ever discuss my health issues with some nurse or other random person filling my answers in when I have no clue about who else is listening around me. And those deafblind friends of mine who have a fancy Apex Braillenote want to be able to fill in their own health questionnaires themselves.
Healthcare records should be accessible, and available in formats customers can read. Currently in USA, the health records are the property of the providers. And you’ll have to be in person, in the correct department, in the opening hours, and fill in some inaccessible paperwork, and pay, after which you may get some of your details. In print. How the f is that accessible? Many of the disabled don’t obviously drive, so to arrange paratransit or a driver to accompany you to some herculean request to get some expensive paperwork that works for sight readers is not that appetizing. I want healthcare records patients can have digital access themselves, where they can also audit who has accessed their info. And have those records in secure format, so no more NHS type drama, but accountability for designers for securing the records too. I want to be able to read my own files, on my computer or iPad, and see what has been written. Transparency. Sorry, doctors, but the era of only you having access to medical data is over.
I own all my health data on my phone, watch, other health gadgets, and will not share those to medical providers. I want to have my own records accessible to me. In many other countries that is possible.
Disability etiquette 101
This is something that should be tackled already in medical schools. Let’s start with the base of the problem: medical model of disability. There, I said it.
You see a Deaf person, and insist they have hearing loss, are broken, need to be fixed. Here, let’s have your child implanted with this cochlear implant thing. Wait. Stop. Stop with that medical model right there, with your Deaf customers, and everyone else. Maybe a person who is Deaf, proud and happy member of local Deaf community, uses sign language as their first language, and tells you he is happy as he is, is actually… gasp, happy as he is? Quit fixing people that aren’t broken.
A number of my friends that were happy as they were have been bullied by doctors to have cataract surgeries. If you are happy with your blind skills in life, why do it? Not everything needs to standardized-fixed.
And you subject autistic children to torture “treatments” like ABA and CBS. Instead of respecting children’s or adults’ neurodiversity and them as they are, you subject them to that. Just so that they can be compliant, use neurotypical-standardized amount and style of eye contact, facial expressions, and learn to fake that non-autistic accent.
I could go on and on with other disabilities.
Start treating people as they are. People. Persons. Basic etiquette is not really that hard. Why is it that bus drivers and servers in the restaurants seem much better in this than medical people? “Hi, my name is Joe, I will take care of you tonight. Follow me to the table”, “Morning sir, where are you going today?” So in case of medical environments that should not be any different: “Morning, miss Smith. My name is Shirley, I’m a nurse, and will take you to Dr Bob’s office shortly. Would you like me to take you the waiting room/get you a glass of water/help you with the paperwork if you haven’t already submitted it?”
Use your voice, tell me your name, your function, and what you want to do.
Don’t touch without asking for permission first. It’s sad this has to be mentioned specifically, but believe me, it has to. When I don’t see you, anything touching me in a medical environment is very stressful, unwelcome, horrifying, and capable of permeating to nightmares in the future. Do. Not. Touch. without my permission.
If you work in either medical or mental health fields, or in medical industry in general, or are involved in design or sound design of medical buildings, learn more. Ask your customers. Learn to listen, ask questions that matter. Learn which kind of things go together. So if your customer is autistic, they are more likely to have x, y, or z conditions. If your customer has poor sight, maybe, well, ask them about their sleep, and so on. And keep the not interrupting all the time habit that you should have understood by now on.
Oh, and ask people for their communication preferences, and respect them. Some people want to see you in person, some don’t. Some will love video conferences, some will hate them. Some will prefer to type instead of talking, so make that possible. Some deaf people will want or need an interpreter: get one. Some foreigners, like me, will need to specifically find out that they are, in fact, entitled to have a translator or interpret if they aren’t comfortable in understanding medicalese or don’t want to orally talk to you in your language. All will want to be able to read the notes in a format they can understand. Plain language, large print, or detailed medicalese version… ask. Don’t assume. If someone asks for braille or digital files, don’t bring them large print. It’s as useless as printing your notes in Chinese if someone asked for English.
There’s some for a start. Did I miss something completely? Thoughts?
Here some more food for thoughts:
- Architecture that’s built to heal TED Talk, transcript
- There’s a better way to die, and architecture can help TED Talk, transcript
- Why hospitals are making us sick TED Talk
- Architecture for autism
- ADA Checklist: Health Care Facilities and Service Providers (a long read at AFB)
- Kowal Architects also seem to have interesting observations about blind and autistic architecture