Monday, January 20, 2014

POV and Accessibility in Everyday Life

I recently got a comment talking about how cool it would be to get an entire episode of Glee shot from Artie’s point of view, with regard to accessibility. That gave me the idea to do a post like this, which focuses on different accessibility issues in everyday life. From rooms of a house to outside, to going to school and transportation.

[Image is: Me: Standing in the doorway of my bathroom, hanging onto the doorframe.  I'm dressed in blue jeans and a blue striped tee shirt.  Not smiling as I am trying for a serious pose.  Photo credit: a friend, September, 2008]

My bedroom has generally always been a place I can get around easily. Even as a child. I always had my own bed, which I could easily get in and out of. Anything and everything I need to get around are there with me (crutches and wheelchair) and close by when I go to bed at night. Likewise, as a child, leg braces and/or this weird thing I had to sleep in as a really little kid to help my leg muscles were also there. Otherwise, my bedroom is typical.
The only thing I can think of that was regularly a difficulty was picking out my own clothing because of the height of the clothes hanging in the closet. Once, as a kid, I ended up pulling the entire rod and all the clothes down, too, trying to get a shirt, while balanced on my knees. Another time, I smashed all four of my fingers in a closet door while trying to open it from the divider in the middle, because the handle was too high.
Closet height is no longer an issue because I live in accessible housing. So that is on a level where I can comfortably reach it. None of my other clothes are in dressers, but open baskets on the floor of the closet, so I can easily reach them.
While traveling or house-sitting, bed height is an issue. My own bed is at a height where I can sit on it and swing my legs into bed. But beds in hotel rooms, or even at family or friends’ houses are often extremely high, and I have to approach them differently. I’ll face them, and use my arms to boost myself forward. Then, it’ll be a bunch of weird movements to create the momentum I need to get the rest of the way into the bed. The whole time, my face is likely against the comforter. Not very glamorous but it works.
The layout of a bathroom is very important. From the width of the doorways, to the placement of the sink, to the bathtub or shower. All my life, my parents have lived in a house where there were plenty of stationary objects to grab if needed. A window sill, etc. They also always had a bar fastened onto the side of their bathtub so I could safely get in and out myself.
On a family vacation to a cabin, I had an accessibility issue with the shower that required a little creative thinking. I can’t remember if I had a shower chair at that point or not. I almost think I didn’t. Anyway, my mom ended up putting an unused low, sturdy cooler in there that I could use as a bench. Sometimes, having a disability means thinking up creative solutions and my family is known for that!
However, when I went away to college, they remodeled their bathroom. Specifically, their bathtub (installing a sliding door on the existing bathtub.) That extra bit of height from the track for the sliding door was such a pain. Getting in was no problem. I could hold onto the walls and safely get in. But when wet, attempting to get out was horrible, because I could only manage to get one leg out while standing. Then, I didn’t have anything to hold onto to get the other one over that extra track. I ended up dropping down, onto my hands, and having to jerk my leg over the side. I had bruises like someone beat me up that lasted for weeks.
After college, I had a job at a summer camp for three summers. Though they had an accessible stall in each cabin, their showers were entirely impossible to use. Just a wide open space enclosed by tiles. There was no way to safely use it. So I had to improvise and wash up at the sink during my break (including my hair.) They did install a bar, but the placement of it wasn’t what I needed, so the issue never really got resolved. The shower chair I had then didn’t have a back (was more a bench) and would not have been sufficient for the situation. Even if I had a shower chair that suited my needs, I would have still needed to navigate out of the wet shower somehow to and then find somewhere to sit, dry off and get dressed.
Now, living where I live, the bathroom is accessible, from the width of the doorway to the roll-in shower (which I can safely walk into and then use a shower chair. I now have one that’s sturdy, and equipped with handles in the bench and a back.)
In and of themselves, stairs aren’t a problem for me, unless they are especially steep. When I was a kid, and had different crutches, I used to keep one with me to use, and drop the other down to the bottom, to pick up again once I got there. As long as there is a railing and it’s on my dominant side going down, I can manage on my own. If not, I have no problem holding my crutches, sitting and scooting. The only problems come about if there are no railings, or if I don’t realize soon enough that the railing is on the wrong side going down. Then, I’d need to ask for help, and have needed to ask at one time or another. My apartment now has stairs, but also an elevator.
Most of my difficulties in the kitchen came with there not being enough surfaces that I could hold onto in order to bring a plate all the way to the table from the stove or refrigerator. I could slide it along the countertops and walk and keep my balance right up until the last moment, when the table was always JUST out of reach and I’d need to ask someone in my family for help.
Once, when my youngest brother was around 6, (and typically very understanding and accepting of my need for help at times) he surprised me. When I asked him for help with my plate, he said, “Can’t you just push it across the floor?” I was like, “Well, yes, but would YOU like to crawl across the floor pushing your plate in order to put it in the sink?” He thought about it, and agreed that, no, he actually wouldn’t like that. And helped me out without another word.
My apartment now has all lower surfaces. The counters, sink, stove and most cupboards. However there is still that gap between the counters on the perimeter and the table. It’s this more than anything that has me using my wheelchair at home, because when I use it, I can safely bring things from one place to another, and even balance a plate or or bowl on my lap.
Living rooms are usually fine. They’re big, with plenty of space and by design, plenty of places to sit :)
At my parents’ house, I have an easier time going in the front door, and out the side door. Mainly because, though steep, there is plenty of space at the top of the steps to put one of my crutches out in front for balance while I climb the stairs and balance with the other. Going up, it doesn’t matter that the steps are narrow. Coming down, I need them to be wide, and closer to the ground, and that’s where going down through the garage steps is better.
Remember how I said that as a kid, with different crutches, I used to drop one down the steps and then get it at the bottom (while using the other, and the railing to navigate?) Well, there was a time when I got in such a habit doing this that I inadvertently dropped a crutch down my front steps. There was no railing. My feet were on the top step. My remaining crutch on the second step. No one was out there (my siblings playing out back, Mom in the house.) And I was stranded and terrified convinced I was going to take a header right down the steps. After what seemed like forever, somehow, I fell on my knees on that top step.
Outdoors is where I typically used my chair even as a child because distances were greater. So anywhere outside of the yard at home, I was probably in my chair. Things are generally accessible, with ramps in places you’d expect. However there are still stores (in certain quaint parts of town) that require you to go up a single step and through a narrow doorway to get inside. In those cases, if I didn’t have my crutches, I was out of luck.
Surfaces outside of pavement are difficult to navigate. (Grass, sand, snow, gravel… Seriously, anything other than pavement.) I usually had my parents or my sister to help push me.
At school (elementary) I usually had another child assigned to me to help me carry things or to make sure I didn’t fall or need help with anything (really, though, it felt like a having a babysitter) before I used my chair more frequently. I often resented this kind of thing because it set me apart from the other kids. If I ever had a surgery in an academic year, I could count on loads of great cards from classmates, and inevitably there would be one or two with the sincere sentiment that, “now that you’ve had your surgery, I can’t wait for you to be able to walk like everyone else.” Except it didn’t exactly work that way. Surgeries would help (after a lot of pain and recovery and therapy) but they wouldn’t fix me.
In middle school (just 6th grade, I think) I had an aide whose main job was to ensure I wasn’t knocked over in a crowded hall and to open heavy bathroom doors. The same issue with resentment there. The biggest issue I remember in middle school was that I had one class in a portable (an outdoor classroom at the top of a ramp.) Usually I had no problem with it, but one day, I was on my way out there and realized that the snow was making it really hard to push. In middle school, the passing times were around 2 minutes between classes, but even with my extended passing time, I didn’t make it the little ways outside to the portable. By the time I got to the ramp and tried to go up it, I realized there was no way. There was just too much snow. So, I took just as much time turning around and going back into school. I spent the remaining minutes in a former teacher’s classroom with my freezing hands over her heater, since snow had completely soaked through my gloves.
By high school, using my chair now, I was 100% self-sufficient. My high school had an elevators and I was always in adaptive PE, but excelled wherever upper body strength was required. Our passing times were 10 minutes long so I didn’t need to leave early. And I was allowed to carry my backpack on the back of my chair with all of my books for the day already in it. Usually I would transfer into a desk, but in some classes I used a table. Bathrooms had accessible (real accessible) stalls. The only issue there was that they were usually occupied by students smoking cigarettes. The only issue I really remember from high school was the one time a class of mine changed location. I was running late for some reason, and knew they’d be in one of two places. The problem? By the time I got to the rooms, the doors were closed and the windows in the doors were so high up that I couldn’t see which my teacher was in, even when I boosted myself. I was generally much more at ease with myself and on class trips while I was eating at a restaurant or sitting somewhere outdoors like a park bench just to get out of my chair. I started letting classmates try out my chair, not so they looked at it as a toy, but so they could experience it and perhaps then, it would take the stigma of seeing me use it away.
As a general note, I always deeply resented needing an IEP (Individualized Education Plan) which is required for students with disabilities. It’s completely well-intentioned and I’m sure it helped, but all I remember about it was sitting in meetings while all my teachers talked about every single way (which never seemed like much until these meetings) I was different from my peers. I seriously wanted nothing more all through school than to fit in. My biggest desire was to “be like everyone else.” These meetings were just reminders that I wasn’t. I needed extra time to take tests. Struggled in geometry because my fine motor skills prevented me from using a protractor. I needed extra passing time. Protocol had to be in place for a fire drill. What could I do in gym class? All these little things became huge.

As I don’t drive (that’s another post in and of itself) I’ve always been reliant on family or friends for transportation. However there was a brief time when I went to community college where I relied on public accessible transportation to get to and from school. I would not recommend this. The type of transport I used required a phone call to schedule your pickup and drop off at least 2 days ahead of time. They needed exact times, but that did not mean they wouldn’t show up way early or way late. They didn’t wait when they showed up early, and when they showed up late, some still demanded payment because they weren’t a full half hour late. Definitely not something I enjoyed using.
Weather is a huge hazard for me. If it rains or snows, it either means difficulty navigating or rust for my chair. If I use my crutches on a wet floor, it means risking slipping and falling. In the rain and especially snow and ice, my dad and brothers are great about holding onto me while I walk so I don’t slip and fall.
Other common household hazards include throw rugs. Wheelchair and crutches work best on flat, uncluttered surfaces, but a rug can bunch and make pushing difficult. If I’m walking, it means a better chance of slipping or tripping.
Just to end this on a happier note, I thought it would be cool to let you in on some of the creative solutions my family has come up with through the years. There is no manual for what to do when a shower is inaccessible or what to do in the millions of other situations you run into on a daily basis. It requires you to think on your feet, and my family and I have certainly learned to.
When I was very little, before I learned to use crutches, I used a reverse posture walker. Maybe you’ve seen an elderly person with a walker they push in front of them? Mine was one I pulled behind me. My great-grandma used to sew me little velcro pockets that could hang on my walker, where I could put any small things I might want to carry with me. I had several of these through the years.
I lived with my great grandparents when I first learned to ride a bike. My great grandma taught me to ride a tricycle when I was around five or so (my balance wouldn’t allow me to ride a two wheeler ever.) The easiest to ride was my great grandparents’ broken down Smurf Big Wheel. When he saw how I struggled to keep my feet on the pedals, my grandpa took me to pick out a new Big Wheel. Then he fitted it with custom, wood block pedals he fixed to the original pedals, which had straps to secure my feet. I loved that Big Wheel. I was the only little girl to ride a black and gray Big Wheel with a fire applique on the seat. :)
Years later, my dad ordered me a three-wheeled bike to ride, and made custom pedals like my grandpa had years before. That bike was awesome and came with a big basket on the back. It was definitely big enough to carry a toddler, so when I rode my bike in front of my aunt and uncle’s house I used to take my 2 year old cousin (with his helmet on) for rides in my bike basket.
My dad also made something on the back of my wheelchair so I could carry my crutches with me. He used to cover my crutches with moleskin so they didn’t cut into my arms. He even painted my crutches (when I had wooden ones) blue, at my request, after a surgery.
More information than anyone probably ever wanted, but there you go. Hope this helps!

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