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Hallo, willkommen

This blog is a personal record of the life of a chronically ill (chronically awesome), disabled, dyslexic, doctoral student and entrepreneur.

I share the beautiful moments, and the hard ones. It's unfiltered, and extremely uncensored.

Enjoy!

Everyday Accessibility (Is A Right, Not A Luxury)

Everyday Accessibility (Is A Right, Not A Luxury)

Yesterday I went to my bank to deposit some checks that had been floating around in the bottom of my purse for far too long. The branch between my home and my office has been undergoing a monstrous renovation for months now. It must have cost a small fortune. They did a lot of aesthetic changes, but also a fair amount of structural alterations, redesigning the whole front of the building, the location of the doors, and the layout inside. It's like walking into a brand new space. It's very pretty, and they are rightfully proud of their renovation. Feels open, welcoming, shiny and new, except...

Important backstory: So, at this point in my life, I'm pretty much a full-time cane user. I can putz around my house or office without needing it most of the time, but when out and about (you know, places where it's a problem if I collapse because my hip gave out, or where I can't just sit in the floor when my knees stop working), I have to use my cane. I frequently have my joints taped in place, and use knee, thumb, and back braces. Within the next few-several years I will most likely begin needing to use a wheelchair at least part-time, but not yet. 

... I pulled into the parking lot and snagged a space in the middle of the lot. As I approached the bank, which is in a small strip mall with about 5 other businesses, I noticed there is one disabled spot out front. There might be more further down, but there is one here. The entrance is two beautiful, large glass doors with shiny, vertical handles that are about 3 feet long running up along the center. I reached out and pulled one of the handles, and jesus fucking christ, does this door weigh 300 pounds? I pulled again, then tucked my cane under my arm, used both hands to pull on the door, and as it opened, I nearly fell. Okay, caught myself on the handles, shoved my foot in front of the door to keep it from slamming shut and forcing a repeat of the ordeal, while also trying to get a handle on my cane again without dropping it. Not my most graceful moment. I made it inside. The table to fill out deposit slips is now a normal table instead of a tall bar, so people using a wheelchair or who need to sit could actually utilize it. Awesome! But the table is surrounded by chairs, and the slips are in the center, unreachable without standing up if you're in a chair at the end of the table (the only spaces open for a wheelchair). But okay. I noticed the tellers counters were new, and one of them was lowered so it was also wheelchair accessible! So awesome! Except there were 2 office chairs in front of the counter, so there is no room for someone in a wheelchair or walker. 

See, these are the things you notice when you live with a disability, things that able-bodied people probably never have even thought about. Why should they? It hasn't affected them. But you see, that's not an excuse. Disabled people are the largest minority in the country, but we receive so little consideration. It's ridiculous. When I talk to people (okay, a lot of time it's more like a passionate dissertation) about accessibility issues, my observation is that abled folks seem to have one of a few reactions. 


1. They aren't sure what constitutes accessibility. If there's a "handicapped" parking space outside, isn't the space accessible? (FYI - "handicapped" is considered a slur by most of the disabled community. I don't care what it says on the signs, please use the word "disabled" instead) 
2. They understand that accessibility is an issue, but it's far from the biggest issue out there. I mean, disabled people have already been granted so much! In fact, it's kind of ungrateful for us to ask for more. Plus, making spaces accessible is suuuper expensive! 
3. They don't think there are enough disabled people in their community for it to matter. Or they just blatantly don't care. Or they feel that the cost/inconvenience of making spaces accessible just isn't worth it. Because much like health care, it's not like accessibility is a human right or anything...
4. And sometimes you get the good ones. The ones who acknowledge that they really have no idea what the needs and struggles of PWD (people/person with disabilities) are, but we do need to do whatever we can to make life equally accessible. While they don't know what that is, they are ready to listen and to learn. 

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In the day and age that we live in, with the internet not only at our fingertips but also in our back pockets wherever we go, there's little excuse for ignorance. At some point, willful ignorance becomes ableism. I mean, I think I'm a pretty reasonable person. I don't expect every person on earth to spend their days googling "how to make spaces accessible for PWD," but once you have been made aware of an issue, you probably should do just a smidge of research. At least enough that you can have a conversation about it. But like I said, I don't expect abled laypeople to be experts. But what I do expect, fully and without any reservation, is for contractors, architects, and every single person who is involved in the construction, renovation, and design (structural and aesthetic) of a space to either be exceptionally well-versed on the subject - by a disabled person's standards, not their own, abled standards -  or at least (and probably in addition) employ someone who is actually an expert - that is, someone with first or maybe extensive second-hand experience with living with physical disabilities & mobility struggles - to review EVERY ASPECT of their design to ensure their space is accessible for everyone.

Think about it. You don't have architects design a museum where every doorframe maxes out at 5'4" just because the designer is short, and their friends are short. That would be ridiculous, right? You'd never design a space that keeps people from being able to visit because of their height. There are lots of people in the world that would like to visit your museum who are taller than 5'4" so you have to keep them in mind when planning the accessibility. You're thinking: "this is an absolutely ridiculous analogy," right? The thing is, it's not. Why would your considerations be different for people with disabilities? No really, why? I'll wait. 

I'm pretty mobile still. Which is nice. A few weeks ago I was in NYC to meet a friend. I tried to get lunch at a place (well, I did get lunch at a place) and the door was similar to the ones at my bank. I barely got it open, and dislocated my shoulder in the process. It was ridiculous. Hands-down the heaviest and most poorly designed door that I've ever walked through. Sitting there in the window, eating my rice and beans, drinking a bottle of water, reading my book, I watched 6 separate, fully abled groups of people try to open that door, fail, assume the place was closed, and leave. If your space is barely accessible to abled people, it's absolutely not accessible to the disabled! I couldn't get the door back open on my way out. A nice guy opened it for me. I'm so thankful for kind people, but I shouldn't have to hope that someone comes by to open a door for me. That's absurd!

I met up with my friend at the library. The entrance is a huge, rotating door. I took a deep breath and prepared for the surprisingly challenging thing these doors are when you're mobility challenged. It was ok, I almost fell, but almost doesn't count. And my friend, before we stepped in, asked me "are you going to be ok with this door?" Honestly, it took me aback. I'm not used to people being aware of my needs. It was really kind. Little kindnesses, especially when you're disabled, are deeply meaningful. As a PWD you're simultaneously invisible, and the focus of everyone's stares and judgment. It's an unfortunate dichotomy. But when people are considerate, have actually taken the time to educate themselves about your needs, limitations, lack of limitations, and exhibit an awareness and patience, but not a patronizing, demeaning concern, it's moving in a way I'm not sure I can quite describe. Suffice it to say, I'm lucky to have such beautiful people in my life.

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(longer story, which I touched on in a previous entry) On a separate occasion, a few months back, I was in NYC for a lecture. It was really great, presented by one of my all-time favourite people, and it was a closed-to-the-public kind of thing in a studio-office-place. I was personally invited, and I felt special! And it was a subject I was dying to learn more about. I went alone. I don't know my way around the city well. I'm really uncomfortable in cities, actually, but that is neither here nor there. I got to the location half an hour early - well, what I thought was half an hour before the talk started, but was actually 30 min before the doors opened - but the doors were locked. I sat alone on the sidewalk because I wasn't convinced that, if I left, I could find my way back again. And I'd walked several miles already and everything hurt and I was exhausted. Eventually some others arrived, and we were granted access to the lobby, where we were left to wait for another 30 minutes. There were no chairs, so I sat on the dirty, cold, marble floor. One guy squatted near me. The rest stood. Finally, a man came down and told us we could go up. The entrance was up 3 flights of stairs. I was prepared to walk the stairs. I'm slow, but I can do stairs most days. But another man, a guy named Syd who apparently had some mobility issues himself, requested an elevator. There wasn't one. I'm used to this, but he was not. He demanded access. The man talked to someone on the other end of a walky-talky for a minute, then begrudgingly said: "follow me." I was going to stay with the others, but Syd requested I come with him. "You don't need to struggle with those steps because they don't have their act together!" He wasn't wrong.

The guy from the studio walked us out the door and down the sidewalk half a block. We turned right and went down another half block to what appeared to be a financial office. White marble interior with shiny gold trim, no art on the walls, security guard at a desk, and a set of lifts in the back corner that were roped off. The studio man addressed the guard, saying we needed to get to the 3rd floor. Then he left. The guard didn't know what was up. We didn't know what was going on. He took copies of our driver's licenses, asked us several probing questions about who we were, why we were there, where we were going, why we needed to use their lift (a fair question). We tried to explain that we were trying to get to an office building so we could attend a lecture on dark matter. He was confused. We were confused and tired. I'd come down on the train from CT. Syd and his wife had come in from Long Island. We just wanted to attend the talk we had traveled relatively good distances for. After about 20 minutes, the guard escorted us to the lift, hit the "3" button, and the doors closed. They opened on the 3rd floor in what can only be described as a mop closet? We shuffled out, looked around, and wandered down a hallway towards what we suspected was the right place. None of us had been there before, despite Syd's son being one of the head writers for said company. We finally saw the guy who we had seen at the very beginning, who let us into the lobby. "Oh good, you found us. " He said flatly. "There's wine and pizza. Make yourselves comfortable."

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Let me tell you, this was the best day of my life: being invited to a physics talk by one of my favourite people and someone I really look up to, and actually being able to shuffle my schedule so I could attend (a miracle in and of itself)! But believe me, I have never been less comfortable at any point in my entire life. I have never felt less like I belonged somewhere. And not just because I didn't know a single soul, or because everyone was apparently some sort of high-finance New York rich kid and I'm a poor science nerd from Connecticut, but because the whole ordeal of getting into this space was so demeaning I wanted to cry, or leave. My anxiety skyrocketed. I scooted off to the loo, took some deep breaths, tried not to vomit, and decided "We've come this far. We're doing this!" 

I sat around and made uncomfortable small talk with strangers for an hour, then we made our way into the room the panel was being held in. And the seating was... a huge staircase? A huge wooden staircase. With no chairs. Everyone got to sit on the floor. And you couldn't lean back because you'd be leaning against the knees of the person behind you. It was very yuppie-hipster. It was all exactly what you think of when you imagine a stereotypical millennial workspace. But it's ok. I struggled up to the top and awkwardly sat on the floor with a nice gal who apparently works in accounting and has a passing interest in outer space. Trying to get up an hour or so later was a humiliating challenge, but being at the back/top I just hoped no one could see me. Getting down the stairs was embarrassing. My feet didn't want to work. I almost fell. I stood around for a long while, chatted with some interesting (and some "interesting") people, and got to meet the fellow who had invited me (highlight of my year, hands down). I was so nervous, but he was kind and it was wonderful. I tried really hard to push through my anxiety and participate in the conversation, though I know I just seemed awkward. It was glaringly obvious I didn't belong there. I stayed after most folks had left because I figured, I traveled something like 150 miles to be here, I'm sure as shit going to get as much science out of tonight as possible! The guy who greeted us at the top of the elevator kept trying to nicely tell me (and yes, only me) to leave, by pointing to a new, magically available elevator that will drop me out on something or another street. 

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I eventually left, put on my headphones, found the subway, and took 3 trains to get home. I cried as I walked. This had been the most magical, and the worst night I had had in a long time. I understand that, currently, the studio doesn't employ anyone with physical disabilities, that everyone who works there is like 30 and under, but that's not an excuse for not having an accessible space. I may not be a wall street kid. I may just be some nobody who isn't going to advance your career or fund your research, but I, like all PWD, deserve to be able to go places and do things without being humiliated or treated like cattle. I felt guilty for not being grateful for just having been invited, but also outraged that I felt that way after what I - and others - went through. And yes, that story is an extreme example, but it's a completely true story. 

There are more subtle examples of inaccessibility all over the place. From banks to beaches to coffee shops to train stations. The lack of ramps, or ramps that are too steep. Broken bricks in the sidewalk that are impassable in a wheelchair, and challenging if you have less than optimal mobility and stability. Doors that are barely wide enough to get a wheelchair through. Exclusively high-top-counters. HUGE gaps between access points on a long sidewalk. I could go on probably forever. Some places, like my office, which is in a medical office complex, need buttons that open the doors for you. It's fabulous and very disability friendly. But not every space needs that (though it would be awesome if every space did have that!). Not every space needs an elevator (unless you're ever expecting people to be able to access your second+ floor(s)). But making sure there's at least one entrance into your shop that doesn't involve stairs is a start. Ensuring your doorways are wide enough to comfortably fit a wheelchair WITH SOMEONE'S HANDS ON THE WHEELS through is not a big challenge. Making your doors light enough, or just properly tensioned and lubricated enough so that someone can open them easily. Ensuring that you have disability accessible restrooms that are actually disability accessible. 

The more I observe this sort of blatant lack of accessibility, the angrier I get. If it's your job to build places, you should be able to build accessible places. In my humble opinion, whether you're an architect, a contractor, or an interior designer, if you don't design spaces that are accessible, you aren't good at your job. I don't care how pretty or otherwise functional your space is. You wouldn't build a museum with 5'4" doorways, so don't build a space that's not accessible for PWD. No excuses. None. 

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I'm going to wrap up with three quick, nice stories. This past summer I was up on Cape Cod, and I visited a boardwalk. And at the end, of course, there are stairs down into the sand. But off to the side, there was a ramp. It went through a small parking lot that was full of disability spaces, and over to a different set of stairs. But when I got there, they weren't stairs. It was a ramp that led to an access mat. It's this big, rubber mat that extends from the end of the boardwalk out over the sand and almost down to the high tide line. This allows people using wheelchairs, walkers, and canes to be able to go down to the ocean and experience the joys and majesty of the beach, just like everyone else. It keeps them from being cut off from their friends, family, or just the joy of that beautiful place. I was so happy to see it that I cried. Actually started crying right on the beach. It was beautiful. 

The second was when I was visiting home, Asheville NC, this past summer after a friend's wedding. I went to the WNC Arboretum, which is one of my favourite places. They have a beautiful bonsai exhibit which is outdoors, and extends up the side of a large hill, spanning 3 levels of artfully guided, old trees. And the stairs wander along the exhibits so you never miss a beat! But they also built ramps, of course. And the areas along the ramps were equally landscaped and crafted to be beautiful so that even though you have to use an alternate route, you never felt like you were missing out on the experience of this exquisite place. It was so beautiful and kind. Someone obviously took the time and intention to create an experience that was equally beautiful for everyone. That's equality and accessibility, my friends. 

The third is a little thing, but a meaningful one. I frequent a local coffee shop and have become good friends with most of the staff. As you probably know, when you order a coffee, you are presented with your drink in a paper cup, and then you can go over to the bar and doctor it up however you like, put on a lid and a sleeve, and you're good to go. Well, I take my coffee black, so no doctoring. But a lot of times my hands don't work quite right, so getting the lid on, or those tricky java jackets can be a really frustrating experience. So a few months back one of the fellows, a friend of mine and the manager of the shop, started putting the sleeve and lid on my coffee for me. Just... does it for me. Every time. Without me asking. Doesn't make a big deal out of it, doesn't make it seem like he's doing me some favor. Just pops it on and wishes me a nice day at work. The other staff are equally kind and will help me if I ask, or if they see me struggling, also not making a thing of it.

Guys... accessibility isn't just dropping thousands and thousands of dollars on fancy door openers or elevators. Sometimes it's just doing what you can to make sure everyone in your life is able to enjoy things the same way, or at least with the same fullness that you can. Whether that's making sure PWD can access your office easily and safely, checking with a venue about their accessibility before you give a lecture, designing spaces with PWD in mind, doing or funding research, or just speaking up when you see someone without tags parked in a disability spot, or blocking an access ramp, or if someone is being treated poorly because their disability isn't what people assume disabilities look like, or when a place is just blatantly not giving a shit. Your voice matters and has weight. Use it!

 

Footnote: I'm currently working on an idea to help local businesses, designers, etc, with getting their accessibility game in order, as well as providing some other currently-missing services for PWD in my area, and eventually (hopefully) elsewhere. If you're interested in more information on this, want to collaborate with me... if there's something you think I need to know or something you'd really love to see implemented, please contact me. 
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