Editor's note: This series was first published on Sassy's facebook.
Accessibility in the able-bodied world. Perception and reality. I'm going to go through a week of my life--this coming week--and document here on FB every time I run into an inaccessible situation, how i work through it, when I can fix it on my own, and when I need help, and what obtaining that help feels like and looks like. I'm going to take you through a week of being an independent, resourceful, competent, long-term, totally blind adult with neurological disabilities in Boston. This is a good week to do it because I'm in the middle of preparing to move. So there's lots of paperwork. And other good examples of accessibility challenges, their work-arounds... and when there are no work-arounds.
Starting today, please read my statuses for a week to get an idea of what accessibility is like outside of the conference talks and in the real world. Devs, designers, advocates... we talk accessibility, but do we really understand the lived experience of it, when it works, when it fails? I'm offering us that chance, and if you are disabled, and you feel like opening your life up in some pretty deep, vulnerable, real ways, do it with me. Chart the accessibility of your week this week.
I have a ton of able-bodied friends who get most of the complexities of my life, like that I can't drive, or can't read print. Those are pretty obvious things for a blind person to have trouble accessing. Some of my closer acquaintances know the intricacies of how I deal with inaccessible things. For example, some of my sighted friends know i use my phone to scan documents to read, sometimes it works really well, most of the time it's okay, and sometimes I can't read. Most probably don't know though that I can't read handwriting and that things like wedding invites, cards with fancy writing, or tables can be difficult to impossible to read on my own. Let alone how to respond to mail, or pull up a specific number in a table at a glance when calling about a bill,or RSVPing to an event. It's a total pain. I'll hashtag these series of statuses with #A11YReality i thought about A11YR5Y but screen readers abreviate weird and it's too geeky, so a11yreality.
Most of my friends are very understanding of how inaccessible some things are to me and how I try my best to work around them independently, but can't sometimes.
But I don't think most of my friends really get what it feels like to have a giant stack of paperwork in front of you that needs printed in answers... and there is nothing you can do because scanning it in isn't working. You tried. Asking for help is all you can do, and ... who? Personal information is scary to share at the best of times with anyone!
This is a pretty routine feeling for some blind people around things like tax season if you have a ton of receipts or bills to comb through... or dealing with a medical situation, buying a house, renting a new property, applying for college, anything where paperwork of any quantity is involved. Most of it is more and more accessible... there is still a giant chasm between fully accessible and kind of accessible.
Most of us who are blind ask for help when we have to, and quietly sit on how it makes us feel... because feelings aren't important when it's get it done or don't. You just suck it up and deal. But it's one of those awkward, awful moments where yeah, you do get frustrated that the world isn't accessible to you, and what can you do about it?
I had one of those weeks where processes felt so inaccessible to me. Things just lined up to show me: "Hey, you're blind, you can't quite do that by yourself all the way through." I came up against the limitations of my disability too many times to count this week, and that is rare for me. Usually I can hack together a work-around. I can cobble together some way of accessing things. I can ask for help with just a few parts.
This week I felt like the universe had it in for me and kept reminding me: 'You're blind. You don't get to forget that or fix it."
I don't want to fix it. I want to access stuff!!!!!!!!
And that's where i think the sighted world sometimes doesn't get it. I don't want my eyes fixed. There's nothing that will do that in existence right now and i don't need there to be something that can do that... I just need a chance to access paperwork digitally, dammit! There's a difference!
Which puts my disability in their court... it says: 'You need to make changes so that a blind person can access that."
Some people get mad at that mindset and are like: "your disability shouldn't force the rest of the world to accommodate you."
"How is having digital paperwork a problem for anyone else?" I have asked that of hospital administrators, accountants, universities, wedding planners, restaurants and political officials many, many times in my career.
Ramps. We build them because it's obvious some people can't use stairs. Moms with strollers get to use them too. Print paperwork. WE put it in digital form so the blind people can access it... and so the sighted people can access it in multiple ways too? Just hasn't quite sunk in yet as an equal accommodation to a ramp. I can't tell you how many times I've talked to a bank, a credit card company, an insurance company, and asked for a document in alternative format--online, braille, audio, something besides print. Most immediately answer with: "Can't you have someone read it to you?"
Yes, but that's MY information. Or no, there's no one around and I need info off that document now.
Using a sighted person's eyes is not an ideal accommodation, just as using two or three people to carry a person using a wheeled mobility device up a flight of steps is not ideal. WE don't do that... so why do we assume eyes are any different.
Holding a jug of milk in my hand this morning... there is a printed label on that bottle. I don't know what it says. I could get my phone and try to snap a picture of it. I could send it to a volunteer somewhere via an app, who would probably write back with: "Jug of milk on stone countertop." I could video chat a volunteer and ask them to read this label to me. But unless i'm concerned that the milk has expired, or that it's skim when I want whole milk... what's the point? It just feels like a plastic jug with some writing on it and a label stuck to it... that i can't access, but don't need to really worry about in the grand scheme of things. And I could use my nose to tell if the milk had gone bad. And I only buy one kind of milk so I can't confuse it with something else... but if you lived in a house where there might be two kinds in the fridge, generally you'd ask that the whole milk and the skim always be kept in their own assigned spots in the fridge so as not to confuse them.
I know there's all kinds of health stuff, advertising, branding, coloring and nutritional information on that label... but I don't know what it looks like or what it says.
And before you dismiss it as not really important... It's how you picked the bottle up in the first place as something you wanted to buy! You read it with your eyes. I had to ask someone to do that for me... so how that milk got from the store shelf to the shelf in my fridge was inaccessible already. I asked Instacart to buy it for me, and lots of sighted people do that... but I would have had to go to the store and ask for a customer service rep to assist me to buy the type of milk I wanted if instacart was not something I could use. Or, instead of asking for help, I could have used my phone to scan the bar codes or labels on every bottle of milk until I found the brand and kind I liked. Then I'd have had to figure out the price. See why I usually shop online? Still, it's needing someone else's eyes at some step in the process, which means, by clinical definition, that process is not yet fully accessible. The term accessible means that a disabled person can independently completely accomplish a task on their own.
Milk. That's moment 1 of inaccessibility and working around it. It starts the moment I wake up and walk into the kitchen. And it never stops... as you'll see... I just don't stop working around it.. because I have to.