on cracks that trip: when systems of safety push you to danger.
Not many essays regarding human services begin with a story of someone crying in front of a gas station, but you’re in luck — this one does.
I live in Oregon, known for drug-friendly policy and confusing legislation. Today when I realized I was having a panic attack, I forced myself to avoid coping mechanisms I knew would hurt me.
Oregon has a state law that anything CBD based can be sold to anyone over the age of 18. I’m a ripe elder at 20. Hoping I could purchase pure CBD from a dispensary, I called around to know I was out of luck — I can’t legally enter if I’m not 21.
Well, what if a delivery company BRINGS IT to me? Nope. Even if I’m only buying a product that requires you to be 18, I needed to be 21 to use the service.
I walk in to a gas station, and try to purchase 2 items of CBD only from Chevron. Cashier scans my ID. The transaction voids, the register says I need to be 21. The product says 18 or older, Oregon State Law says 18 or older, and the register doesn’t budge. I leave without CBD. I have a panic attack in my car.
— —
Last year, I was rear-ended in a 4 person car accident that pretty much ruined the rest of my 2021. I had a Volkswagen CC (coupe, very low to the ground car), and was rear ended by someone at a red light. I didn’t hit a bumper that crushed.
I hit the tow ball of a Mercedes Benz SUV in front of me, who hit the person in front of them. The tow ball gave me a concussion, whiplash, and the terror of looking around to smoke filling my car.
One of the ungodly side effects of the concussion was that I fully lost in some situations, my ability to form words and speak. This had been an on and off issue before, but more of a once-every-3-years in disbelief situation.
What the cashier saw today as my voice eventually went out as I was trying to explain the legality of CBD was what happened when I slipped through another system.
I had brutalizing concussion symptoms.
I couldn’t walk into places with bright lights. I would go into work and be so overwhelmed by massive migraines that I felt I was going to pass out from the pain sitting in a dark room.
I had to write a PDF to take with me to doctor’s appointments with photos & information of previous appointments, because I know if I didn’t bring it — I wouldn’t be able to speak.
Genuinely, I just lost the ability to say things, even when I really want to. There’s some evidence that says concussions affect sensory issues and cognitive processing — two big problems that already come into play in people with autism spectrum disorder. Now whenever I have sensory issues from the day, or the people around me, I just can’t form words for my mouth to say.
Sometimes, and this is more embarrassing and frustrating, my brain tries to shortcut my thinking when I know people are listening, and it uses the wrong words even when I mean a totally different word.
I came to visit my dad’s house and parked in front of his mailbox. I said, “Don’t worry, I’ll move it before the mailman brings the groceries”. I meant mail. But my brain associated it with errands — what else gets delivered? Groceries.
It’s innocuous in day to day situations, but in the world of management where your words must have a level of clarity to them, this becomes a big issue. I forgot the word “function” in a meeting the other day. I’ve been programming for 10 years, since 2012. Imagine an even higher stress situation. Would I ever be able to through a job interview again?
As I was getting treatment for the accident, Kaiser led me down a rabbit hole of call only appointments. I had to do video call appointments, or regular phone call appointments. I had to call to get referrals to see a doctor, I couldn’t use the appointment scheduler online.
I couldn’t figure out how to get a patient advocate. I just called and called and talked, even when I couldn’t or my words were incorrect, because that’s the only path Kaiser gave me — and my brain felt like it was melting out of my body anyways.
Eventually, on week 3 or 4 of my speech therapy, months after the accident, I just lost the ability to call. I just couldn’t talk to people anymore. A system who’s goal it was to heal my concussion and fix my speech issues actually stressed me out to the point where I thought any further medical intervention would be undermined by how hard it was for me to get it.
While crying in my car (right in front of the cashier, sorry dude), I couldn’t help but think about greater systems of safety and how they fail us, even when working to keep us going through the correct paths.
— —
Early this year, I went directly to a charity in Washington that specializes in helping people with developmental disabilities and their caregivers purchase a home. I was ready to enroll in their down payment program — which had you take a course about care and responsibility before interviewing you for the money.
You had to open and fill in a word document to “sign up“ for the class. I got a spot, and was sent a piece of paperwork that had 2 parts: a pre-class survey, and a post-class survey. I sent in it half filled for the pre-class survey, and was told I needed to fill out the second part for AFTER the class to take it.
I couldn’t answer the email, didn’t take the class, and I didn’t get the down payment. 3 stories of bureaucratic friction — where I was going down a path looking for help of some sort only to be met with friction. How many more stories of inverse friction do we need? How much friction is too much before the cost of receiving help makes the help worthless in the first place?
— —
If we want to solve accessibility problems in any sense, (not just the disability justice sense), there needs to be more focus on removing points of friction to create access.
Making sure everyone gets seen and hard at scale is hard. But if we build uneven foundations that only certain people can cross through, more and more people are going to be tripping over cracks that others jump over.
We learned these lessons when it came to the vaccine rollout — which governments botched when they forgot to do the research on the communities they aimed to help.
One of the things that will be imperative to improving social aid, programs, or other sensitive experiences where people need help is understanding, predicting, and removing those points of friction. This is a funding issue, UX issue, and a general communication issue.
Day to day, it’s mostly seen within technology — choices locked away behind codebases. Products developed by people who don’t directly communicate with those they’re sending down pathways — consider Instagram, who’s switch to Reels to chase TikTok leaves behind blind users. Considering a majority of people get their news, updates, and general connection to the world through social media apps — the people who leave others behind in decisions don’t realize who they are blocking out.
I’m sure no party in these stories meant harm — these are purely antedoctal and not reflective of all disabled experiences.
But nevertheless, the point the story illustrates is damning— who creates friction and who gets pushed back because of it will be a defining issue for accessibility and equity as we move into a digital world.
Why? Because people will go to other frictionless means — even at a cost to themselves.
What’s easier than crying in front of a gas station cashier trying to do something legally? Asking someone to illegally purchase you weed.
What’s easier than getting healthcare when the systems are confusing and inaccessible? Just not fucking getting health care.
What can you do if you’re not thought of on some of the world’s biggest social media platforms? You become more disconnected from society.
Refocusing on systems of social aid for a second, let’s put this in no unclear terms.
What happens when people can’t navigate the systems we build to get them help? They don’t fucking get help. They cope, but what coping looks like is very different for many different people.
This is when DEI needs to become more than an event at company meetings, more than just a Twitter graphic interns spend 30 minutes in Canva creating a design for.
What would have solved the Kaiser issue? A google search of “barriers to healthcare autism” brings up this 2020 study that reports
“The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72.2%), difficulty making appointments by telephone (61.9%), not feeling understood (55.8%), difficulty communicating with their doctor (53.1%) and the waiting room environment (50.5%).”
Most accessibility issues can be solved with basic, free, research. And listening. We must avoid building funnel systems for social services that force people to drop out. Then, learning how to spot people falling out so we can repair those cracks. If the foundation of a house doesn’t hold all who enter, then it’s not doing its’ job as a foundation.
When people don’t get help from non-profits, governments, or community, they don’t just go onto heal. They go on unseen, and where people go when they aren’t in the purview of the systems we build to care for them can be very, very dangerous for them.
People don’t stop needing help, if they don’t get help. They get relief from other sources, or they get worse knowing other people didn’t help them.
We have to stop building systems that push people off edges. Foresight and understanding potential problems is needed everywhere, but especially in friction sensitive areas where we can fix the cracks, before the foundation stops doing its’ fucking job of holding people up.
